Global Palliative Care News Archive 2021, January - December

MW 748: “It felt like a black hole, great uncertainty, but we have to take care for our patients”: Qualitative findings on the effects of the COVID-19 pandemic on specialist palliative home care

Download the complete issue PDF 650 KB

Additionally, SPHC patients are highly vulnerable, and especially impacted by the pandemic measures, because contact restrictions and fear of infection severely limit their ability to be with loved ones during their remaining time. Although visits to a dying person were officially excluded from contact restrictions in Germany, this was not always adequately communicated and put into practice. Specialist palliative care (PC), including home care, should receive more attention and be involved in planning and regulating healthcare during a pandemic. The PallPan [i.e., National Strategy for Palliative Care in Pandemic Times] project has developed a national strategy for PC of severely ill and dying people and their relatives in pandemics, which contains recommendations for general and specialist care providers. Full text: view source »


Service change and innovation in community end-of-life care during the COVID-19 pandemic: Qualitative analysis of a nationwide primary care survey

PALLIATIVE MEDICINE | Online – 17 December 2021 – This study provides insights from primary healthcare teams into the individual efforts and service changes that were perceived to be beneficial through the first phase of the COVID-19 pandemic. The pivotal role of primary care in ensuring the global ambition of universal palliative care (PC) requires much more attention in future research, service design and policy. As international healthcare systems move to a period of restoration following the first phases of the COVID-19 pandemic, there is a need to ensure learning from rapidly implemented service changes. A once in a generation opportunity has arisen to incorporate cross-boundary service changes and innovations, implemented rapidly at the time of crisis into future service delivery. These include the use of technology, to facilitate more collaborative working, improved access to specialist PC and provision of PC in primary care settings. Future research should focus on which service changes and innovations provide the most benefits, who for, and how, within the context of increased patient need and complexity in the community. Full text: view source »


A qualitative study of the role of palliative care during the COVID-19 pandemic: Perceptions and experiences among critical care clinicians, hospital leaders, and spiritual care providers

AMERICAN JOURNAL OF HOSPICE & PALLIATIVE MEDICINE | Online – 13 December 2021 – Palliative care (PC) offers a unique skill set in response to challenges posed by the COVID-19 pandemic, with expertise in advance care planning, symptom management, family communication, end-of-life care, and bereavement. However, few studies have explored PC’s role during the pandemic and changes in perceptions and utilization of the specialty among health and spiritual care providers and hospital leaders. The authors conducted the study at a tertiary academic medical center in Boston, Massachusetts, U.S. Between August and October 2020, they interviewed 25 participants from three informant groups: 1) Critical care physicians; 2) Hospital leaders; and, 3) Spiritual care providers. Respondents recognized that PC’s role increased in importance during the pandemic. PC served as a bridge between providers, patients, and families; supported provider well-being; and, contributed to hospital efficiency. The pandemic reinforced participants’ positive perceptions of PC, increased their understanding of the scope of the specialty’s practice, and inspired physicians to engage more with PC. Respondents indicated the need for more PC providers and advocated for their role in bereavement support and future pandemic response. Findings highlight evolving and increased utilization of PC during the pandemic, suggesting a need for greater investment in PC programs and for PC involvement in public health emergency preparedness and response. Abstract (w. references): view source »

MW 747: Timely community palliative and end-of-life care: A realist synthesis

Download the complete issue PDF 810 KB

This is challenged by: 1) Accumulated evidence demonstrating low accuracy of prognostic judgements; 2) Many individuals’ orientation towards living and hope; 3) Expanding grey zones between palliative and curative care; 4) The complexity of referral decisions; 5) The loss of pertinent information in hierarchical relationships; and, 6) The ambiguous value of having “more time.” Palliative and EoLC programmes in primary care and community settings are here to stay and grow. A realist perspective centred around the concepts of contexts-mechanisms-outcomes offers a promising way of understanding and improving their workings. Once again, however – after decades of seeking to expand palliative care outside of the realm of cancer – we may need a significant rethinking of the reach of palliative and EoLC programmes. A significant pool of evidence on prognosis suggests that current EoLC policy in England and any other country which relies strongly on “timely identification” is nothing short of hubristic in its expectations of working out death’s timings. And while the day may come, for better or worse, when we are able to perfect the latter, for now we will achieve more if we focus on other ways of improving the EoLC we provide, no matter how brief or how long we are providing it for. Full text: view source »

Health and social care near the end of life: Can policies reduce costs and improve outcomes?

EUROPEAN OBSERVATORY ON HEALTH SYSTEMS & POLICIES | Online – Accessed 9 December 2021 – This brief reviews the evidence on health and social care needs and expenditures at the end of life (EoL). EoL costs are the main reason for high per person spending levels observed at older ages in many European countries. However, there is huge variation between individuals, with estimates suggesting that just 10% of people near the EoL are responsible for over 60% of total EoL health and social care expenditures. High-cost individuals tend to be frail people with multiple chronic illnesses who use considerable hospital and social care services. In most European countries, there will be large increases in annual deaths in the coming years as the “baby boom” generation ages and improved survival ultimately leads to more deaths each year. This will inevitably lead to growth in EoL needs and, ultimately, spending levels. However, there are a number of strategies available to address these challenges. Some EoL needs can be reduced with more active public health measures and active rehabilitation, much of which can be very cost-effective. More active assessment of care needs can also significantly improve the experiences of patients and families, reduce unnecessary tests and interventions, will not shorten survival, and can help to limit the growth in costs. Download at: view source »

Care of older people and people requiring palliative care with COVID-19: Guidance from the Australian National COVID-19 Clinical Evidence Taskforce

MEDICAL JOURNAL OF AUSTRALIA | Online – 5 December 2021 – Older people living with frailty and/or cognitive impairment who have COVID-19 experience higher rates of critical illness. There are also people who become critically ill with COVID-19 for whom a decision is made to take a palliative approach to their care. The need for clinical guidance in these two populations resulted in the formation of the Care of Older People & Palliative Care Panel of the National COVID-19 Clinical Evidence Taskforce in June 2020. This specialist panel consists of nursing, medical, pharmacy and allied health experts in geriatrics and palliative care (PC) from across Australia. The panel was tasked with developing two clinical flow charts for the management of people with COVID-19 who are: 1) Older and living with frailty and/or cognitive impairment; and, 2) Receiving PC for COVID-19 or other underlying illnesses. The flow charts focus on goals-of-care, communication, medication management, escalation of care, active disease-directed care, and managing symptoms such as delirium, anxiety, agitation, breathlessness or cough. The Taskforce also developed living guideline recommendations for the care of adults with COVID-19, including a commentary to discuss special considerations when caring for older people and those requiring PC. The practice points in the flow charts emphasise quality clinical care, with a focus on addressing the most important challenges when caring for older individuals and people with COVID-19 requiring PC. The adult recommendations contain additional considerations for the care of older people and those requiring PC. Full text: view source »

MW 746: Paramedics delivering palliative and end-of-life care in community-based settings: A systematic integrative review with thematic synthesis

Download the complete issue PDF 600 KB

The known scope of palliative paramedicine was established, barriers and enablers of practice identified, and the perspectives of multiple stakeholders explored to reveal three key themes: 1) Broadening the traditional role; 2) Understanding patient wishes; and, 3) Supporting families. The authors’ findings have novel implications for a multitude of stakeholders. Paramedics are a highly skilled workforce capable of filling a gap in palliative and EoLC provision to people in their homes, especially after-hours for palliative emergencies when other community palliative care (PC) services are unavailable. However, a multi-faceted approach to palliative paramedicine is needed to enable optimal care. This review will be helpful to policymakers when developing models of integration between PC services. If they have not done so already, ambulance services should broaden their clinical practice to include PC specific guidelines, accompanied by education and practical training addressing the complexities and legalities of EoLC. Finally, PC researchers have scope to investigate wider health professional perspectives on the paramedic’s role in PC, as well as the efficacy and cost-effectiveness of targeted quality improvement programmes. Full text: view source »


How can social workers be meaningfully involved in palliative care? A scoping review on the prerequisites and how they can be realised in practice

PALLIATIVE CARE & SOCIAL PRACTICE | Online – 30 November 2021 – Although the social aspects surrounding the end-of-life phase suggest a place for social work in it, the profession is often inadequately involved in daily practice. This contrasts strongly with the potential meaningful contributions of social workers in this field. To date, no comprehensive list of prerequisites for meaningful social work involvement in palliative care (PC) exists. This review aimed to gain more insight on the prerequisites for meaningful social work involvement in PC and how to realise them in practice. It could therefore provide pathways for future intervention development in enhancing the involvement of social workers and maximising their contributions in PC. A scoping review methodology was used. The 170 articles that met the eligibility criteria were analysed for relevant content using open and axial coding processes. The nine prerequisites listed in this review concern the level of individual social work capacities and the level of contextual factors structuring social work practices. A majority of articles have, however, focused on the level of individual social work capacities in a rather specialist view on PC. Full text: view source »


Family physicians supporting patients with palliative care needs within the patient medical home in the community: An appreciative inquiry study

BMJ OPEN | Online – 2 December 2021 – This study explores and describes behaviours and health system components that are required to improve the coordinated and collaborative care for community-based patients with palliative care (PC) needs and their family and unpaid caregivers. The authors interviewed family physicians (FPs) who practice in a large Canadian city and surrounding rural area. They identified “possibility statements” that described a future “destiny” state. These “possibility statements” were presented to bereaved caregivers and patient focus groups, as well as two palliative home care teams, to determine their reactions and perspectives to then create a panoramic view of the “destiny” state. The authors subsequently developed a conceptual framework that describes how to achieve this “destiny” state with the patient and family journey as the central focus. It is anchored by two ‘Loran’ triads that describe the effective collaboration required between the four different groups of clinicians (FPs, specialists, PC consultants, home care), who support the patient and family. This conceptual framework is a significant development in the primary PC literature as its key contribution identifies the explicit ways that the healthcare team, healthcare system and societal attitudes can be optimised to improve the care of patients with PC needs. While the roles and responsibilities of different healthcare providers have been explored in the provision of PC, this is the first comprehensive framework that pulls all of these perspectives and roles together. Full text: view source »


National and international non-therapeutic recommendations for adult palliative and end-of-life care in times of pandemics: A scoping review

PALLIATIVE & SUPPORTIVE CARE | Online – 2 December 2021 – The results of the scoping review indicate that besides the integration of advance care planning (ACP) in every clinical area and setting, the further development and expansion of digitalization in the healthcare sector is needed and must continue in order to be able to offer telecommunication and telemedicine. Using electronic devices in communication is helpful in non-pandemic times as well and will be increasingly requested. It also supports a lively exchange between professionals, patients and relatives, e.g., in goals-of-care discussions. Therefore, infrastructure must be provided, but staff must also be trained in specific “online communication skills.” In addition and especially in order to provide sufficient ACP, every healthcare professional should have basic knowledge of palliative care (PC), which must be trained across all relevant clinical disciplines. Finally, a national strategy for integrating PC in pandemic times should be developed in each country. This study adds an overview of relevant aspects and non-therapeutic recommendations in palliative and EoLC after one year into the SARS-CoV-2 pandemic. Only a very limited number of the included articles presented results from research studies. This is, of course, due to the limited time factor and the novelty of the global pandemic situation, but it also demonstrates that there are research gaps and enormous potentials to close them. Of particular interest are the long-term effects on the individuals involved, both patients and family members, as well as healthcare professionals. Full text: view source »

MW 745: Evaluation of an online toolkit for carers of people with a life-limiting illness at the end of life: Health professionals’ perspectives

Download the complete issue PDF 600 KB

Their expert opinion was sought to ascertain whether CarerHelp could increase carers’ preparedness and confidence to support the person for whom they are caring and thereby improve carers’ own psychological wellbeing. HPs also evaluated whether CarerHelp adequately raised awareness of support services available. CarerHelp was perceived as a useful resource for increasing preparedness for the caring role, including physical tasks and emotional support. HPs reported that CarerHelp would increase carers’ knowledge of services, confidence to care and ability for self-care. They endorsed CarerHelp as a useful information source, guide for support, and would promote CarerHelp to clients and their families. Full text (click on pdf icon): view source »


Dying and Death in Ireland: What Do We Routinely Measure, How Can We Improve?

IRISH HOSPICE FOUNDATION | Online – 24 November 2021 – The Foundation’s report contains findings from a study conducted by researchers in Trinity College Dublin about how and where people died in Ireland between 2013 and 2018. It also reports on the type and quality of data on death and dying that are available in Ireland. The report reveals that cancer and heart-related disease are the leading causes of death in Ireland. In 2018, 31% of people died of cancer and 29% of heart-related conditions. Diseases of the respiratory system were the third most common cause of death (13%). The study also found an increase in deaths due to mental and behavioural disorders between 2013 and 2018. This increase was driven by higher rates of deaths due to dementia over that time. The report also found that hospitals were the most common place where people died between 2013 and 2018 in Ireland. Over 2 in 5 (44%) people died in Ireland’s hospitals each year, followed by deaths at home (23%) and deaths in long stay residential care (23%) A further 8% of people died in specialist inpatient palliative units (hospices). Download at: view source »


Exploring socioeconomic inequities in access to palliative and end-of-life care in the U.K.: A narrative synthesis

BMC PALLIATIVE CARE | Online – 21 November 2021 – This study reiterates the finding that socioeconomically disadvantaged populations are more likely to receive hospital-based care at the end of life, and that there is a lack of evidence regarding access to and use of services that might be providing generalist palliative care (PC) in the community. The review findings did not suggest a consistent or clear narrative regarding the relationship between socioeconomic position and receipt of specialist PC in the U.K., with many studies finding no evidence of differences in receipt of care between socioeconomic groups. Finding an absence of evidence does not preclude there being socioeconomic inequities in access to PC in the U.K. However, it indicates there is currently very poor understanding within the U.K. of the extent to which these exist. While it is possible to draw on evidence from the U.S., Canada, and Australia, which suggests an overall trend towards individual socioeconomic disadvantage being associated with lower odds of using specialist PC, further research in U.K. should look to clarify where and when inequities in receipt of care occur. Ascertaining whether differences or similarities in receipt of PC are inequitable or equitable requires better understanding of the relationship between socioeconomic position and need for PC, particularly population level need. This issue has been identified in earlier studies and was reiterated again in the findings from this review. Building on this evidence base, the findings from this review point towards specific evidence gaps within the U.K. context concerning the relationship between socioeconomic position, how need – or "candidacy" – for PC is assessed, and the organisation of care. Full text: view source »

MW 744: Exploratory Review of Palliative Care Assessment Tools

Download the complete issue PDF 650 KB

In addition, while there are many tools widely available and in use, the evidence to support their implementation in clinical settings remains limited. Studies specifically examining the use of mortality risk-prediction tools in prompting clinicians to initiate end-of-life discussions with patients and their families or carers are particularly lacking. It is apparent that development work in relation to a variety of tools targeting different conditions, patient populations and clinical settings, is continuing in this area. Within this review, the evidence base to support the use of most of the tools was relatively poor. The studies included in the review contained similar enablers and barriers; however, they contained little discussion of key implementation issues including the training, time and clinical expertise required to administer these tools in practice. The studies also provided limited insight into the practical and operational aspects of using tools prospectively in clinical settings. Much of the literature identified in the review related to new tools that were largely under development. Hence, these studies provided limited insight into the operational aspects associated with implementation of these tools in clinical settings and the practical and resource constraints that may influence clinicians’ ability to utilise them. Download at: view source »


Palliative care organization and staffing models in residential hospices: Which makes the difference?

INTERNATIONAL JOURNAL OF NURSING STUDIES | Online – 13 November 2021 – The number of patients using palliative care (PC) services, particularly residential hospices, is increasing. Policymakers are urging these services to reflect on the most effective organizational strategies for meeting patients’ complex care needs. This study showed the exact skill-mix composition and proportions of PC team able to ensure optimal control of patients’ symptoms. The added value of physicians and nurses with a qualification in PC in terms of better patient outcomes reaffirmed the importance of education in guaranteeing quality care. Hospices with 12-25 beds, and recruitment methods guaranteeing at least 12-day stay ensured the most propitious organizational environment for optimal management of clinically significant symptoms. The transferability of these results mainly depends on whether the skills of health professionals in our “ideal” model are present in other contexts. The findings of this study provide policymakers and hospice managers with specific, evidence-based information to support decision-making processes regarding hospice staffing and organization. Further prospective studies are needed to confirm the positive impact of this “optimal” organizational framework on patient outcomes. Abstract: view source »


More than means to an end: Assessing provider familiarity with palliative care

JOURNAL OF THE AMERICAN COLLEGE OF SURGEONS, 2021;233(5):S106. Historic surgical dogma viewed mortality, comfort care, and end-of-life therapy as failures of providers’ knowledge and technical skill. This created an atmosphere to defer consultation to palliative care (PC) service until the latest stages of end-of-life (EoL) care. New surgical initiatives demonstrate the need for EoL care, death with dignity, and the need for palliative services. As this need grows, deficits in surgical providers’ knowledge of PC is necessary to direct further training and development efforts. Less than half of participants in this study reported training in withdrawal of care conversations, while 55% reported receiving training in pain management and 64% reported receiving training in delivery of bad news. Fifty-four percent reported being involved in 5 or more EoL discussions in the last year, with trainees reporting fewer EoL discussions than non-trainees; 67% of trainees reported 0 to 4 discussions, while 23% of non-trainees reported more than 20 discussions. Although most of the study participants train and work in intensive care settings, many providers lack the training to carry out PC discussions, including withdrawal of care conversations, pain management, and delivery of bad news. Such training may benefit providers and patients in the future. Abstract: view source »

MW 743: The under-representation of palliative care in global guidelines for responding to infectious disease outbreaks: A systematic narrative review

Download the complete issue PDF 550 KB

This review reveals that although there is a growing appreciation for PC, there continues to be very limited inclusion of PC in guidelines and hence limited implementation in the setting of infectious disease outbreaks. Further development of guidelines and policies that detail the management and implementation of PC is crucial to deliver best-practice care to patients in the context of infectious disease outbreaks and to reduce the burden of unnecessary suffering in such times. Full text: view source »

New Zealand

Ending well: The urgent case for accessible palliative care

NEW ZEALAND | Maxim Institute (Auckland) – 2 November 2021 – Whether the cause is COVID-19 or something else, death is inevitable for all of us. A good death, however, is not. In spite of the care, expertise, and knowledge now available, bad deaths are unfortunately all too common for many New Zealanders. Palliative care (PC) is an important ingredient for good end-of-life care (EoLC) – even when the person has complex medical issues or has struggled with significant pain. It is an approach that "prevents and relieves suffering through the early identification, correct assessment and treatment of pain and other problems, whether physical, psychosocial or spiritual." Studies have shown that PC can result in improved quality of life, an increased life expectancy and, due to lowered interactions with the hospital and admission process, can relieve financial costs on the healthcare system. One study found, for example, that "involvement from PC was associated with significantly lower hospital costs in the order of $5,000-8,000 (Australian) for all patient groups, but most particularly for non-cancer diagnoses." For too many New Zealanders, however, good palliative and EoLC is out of reach. As demographics change and New Zealand's population ages the number of people struggling to access PC services is growing rapidly. In fact, studies project the need for New Zealand PC services to increase by half in the next 20 years, and almost double in the next 50 years. New Zealand's health system is currently undergoing significant reform, through systemic changes as well as with the introduction of legalised assisted dying. With these changes underway it is essential that PC services are not forgotten, but get the necessary attention and support so that all New Zealanders have the best opportunity for a good death. This paper identifies five key areas where policy changes could improve access to PC services for New Zealanders. Download at: view source »


A novel care guide for personalised palliative care: A national initiative for improved quality of care

BMC PALLIATIVE CARE | Online – 11 November 2021 – The Swedish Palliative Care Guide (S-PCG) has the potential to provide meaningful support in identifying palliative care (PC) needs; facilitates inter-professional assessment and care of these patients; and emphasizes the needs of the family throughout the palliative trajectory. It supports high-quality personalised PC, and when properly used may help patient and families express their too-often-neglected needs, support individual negotiation of goals of care, and subsequently promote relevant care. Choosing to implement S-PCG includes responsibility for its use in concordance with the principles of good PC. The next step entails scientific evaluation of the clinical impact and effect of S-PCG in different care settings – including implementation, patient and family outcomes, and experiences of patient, family and staff. Full text: view source »

MW 742: Enhancing a community palliative care service with telehealth leads to efficiency gains and improves job satisfaction

Download the complete issue PDF 575 KB

Accounting for inflation and standard wage increases, the labour costs before and after the addition of telehealth were approximately equal. There were small variations in non-labour costs, but these were not directly attributable to the expansion of the telehealth services. Overall, the service activity increased by 189% for standard doctor and nurse consultations, due to the increased efficiency of telehealth compared to the previous outreach (travel) model. Thematic analysis of the staff interview data generated an overarching theme of increased job satisfaction which staff attributed to the patient-centred nature of the telepalliative care service, the increased peer support, and increased professional development. Compared with the traditional in-person service, the new telehealth-supported model resulted in equivalent costs, greater efficiency by allowing PC to reach more patients and improved staff job satisfaction. Full text: view source »


Palliative care and legal issues in geriatric psychiatry

INDIAN JOURNAL OF PSYCHOLOGICAL MEDICINE, 2021;43(5):S31-S36. There is an increased risk of debilitating illnesses that often have no curative treatment with aging. The mainstay of treatment in many such conditions is palliative care (PC): a holistic approach focused on preventing and relieving physical, psychosocial, legal, ethical, and spiritual problems. It involves the facilitation of end-of-life care decisions aimed at relieving distress and improving quality of life. In this article, the authors discuss the role of mental health professionals in legal issues related to PC in the elderly around decision-making, right to autonomy, euthanasia, and advanced directive. The cognitive decline associated with aging and mental health issues in the PC setting of an individual such as dementia, depression, and hopelessness, and impact on the family members like burnout may influence the overall capacity of that individual to make decisions about their treatment. While an individual has a right to self-determination and autonomy, withholding or withdrawing treatment has many legal and ethical implications, more so in those with incapacity, especially in India due to the absence of uniform legislation. The decision to withhold or withdraw treatment might be a restrictive choice due to limited options in a setting with a lack of PC options, poor psychosocial support, non-address of mental health issues, and lack of awareness. As the right to health is a constitutional right, and the right to mental health is legally binding under Section 18 of the Mental Health Care Act 2017, systematic efforts should be made to scale up services and reach out to those in need. Full text: view source »


Health professionals palliative care education for older adults: Overcoming ageism, racism, and gender bias

CURRENT GERIATRIC REPORTS | Online – 30 October 2021 – Most aging Americans lack access to specialist palliative care (PC) aimed at those experiencing serious illness and/or high symptom burden at end of life. The curricula used by training programs for all healthcare professions should focus on helping learners develop the primary PC skills and competencies necessary to provide compassionate bias-free care for adults with serious illness. There is much opportunity to improve this landscape via the incorporation of PC competencies throughout generalist healthcare professional programs. Several recent publications highlight multiple issues with recruitment and retention of diverse students and faculty into healthcare professional training programs. There are also concerns that the curricula are reinforcing age, race, and gender biases. Due to these biases, healthcare professionals graduate from their training programs with socialized stereotypes unquestioned when caring for older adult minority patients and caregivers. Important lessons must be incorporated to assure that bias against age, race, and gender are discovered and openly addressed in healthcare professionals' education programs. This review highlights these three types of bias and their interrelationships with the aim of revealing hidden truths in the education of healthcare professionals. The authors offer targeted recommendations of focus for programs to address implicit bias within their curricula. Full text: view source »

MW 741: Reframing palliative care to improve the quality of life of people diagnosed with a serious illness

Download the complete issue PDF 675 KB

Importantly, application of the framework will require a response to the individual needs and preferences of patients and family carers. While the implementation of an effective framework can open the door to PC, poor service experience can also close it. To change the landscape, the quality of PC service delivery must match the promise of outcomes from consistent and evidence-based care. Full text: view source »


Dying in Canada is costing a fortune – and worse, it's not how we want to go

THE GLOBE & MAIL | Online – 26 October 2021 – In Canada, 61% of deaths occur in hospital. By comparison, that number sits at 30% in The Netherlands, and 20% in the U.S. This is a gross systemic failure, and a tremendous waste of money. It's also the polar opposite of what people say they want – which, ideally, is to die in a homelike setting, surrounded by family and friends. Only about 15% of Canadians die at home,1 despite polls that consistently show that is the preference of about 85% of the population. And when Canadians do get access to palliative care, it's rarely in an appreciable way. Too often, we are dying in pain, scared and alone – overtreated and under-cared for. "Canadians spend more on end-of-life (EoL) care than other high-income countries, including the U.S., yet we achieve poor results compared to most," according to Kieran Quinn, Sarina Isenberg and James Downar, the perhaps overly polite authors of a new report published by the C.D. Howe Institute that focuses on the economics of Canada's EoL problem.2 "There are structural factors and inefficiencies within our healthcare system that facilitate unhelpful and unwanted medical interventions at the EoL." When you are speaking to politicians, they say, you need to speak their language: in terms of money. But this is about much more than money. It's about respect and dignity, especially of our elders. view source »

1. 'Access to Palliative Care in Canada,' Canadian Institute for Health Information, September 2018. [Noted in Media Watch 24 September 2018 (#582, p.1)] Download at: view source »
2.'Expensive Endings: Reining In the High Cost of End-of-Life Care in Canada,' C.D. Howe Institute, October 2021.


How does English national end-of-life care policy impact on the experience of older people at the end of life? Findings from a realist evaluation

PRIMARY HEALTH CARE, RESEARCH & DEVELOPMENT | Online – 27 October 2021 – This research highlights the need to step back to reappraise how different parts of the health and social care system fit together and how we have arrived at the current set of priorities. Cuts in funding to social care over the last decade have exacerbated the inequities, with staff who care for the elderly at home being particularly poorly treated, underpaid and undervalued. Additionally, the potential to broaden responsibility for end of life (EoL), particularly promoting policies that enlist citizens to build local networks and mechanisms for supporting those at EoL, deserves closer investigation. Drawing on the notion of social capital a concept relating to the level of cohesiveness of the community and the strength of social ties, there has been a call to embrace a model of public health which places more emphasis on the social determinants of health and the influence of communities in the development of better health for all. A public health approach to palliative care seeks to build and operationalise social capital and encourage embedded civic action. Within this model, the focus is on empowering communities to support those dying, bringing to the fore expressions of a compassionate society and in so doing challenging the "professionalisation" of EoL care. The task confronted by politicians and commissioners, in dividing up the budget to support public services, is enormously difficult; with the need to consider a huge raft of moral, ethical, economic and social arguments. Yet unless the views of stakeholders at all positions in the social hierarchy, from those at the top level of government, commissioners, clinicians, families through to the frail elderly who are close to death, are fully considered – resulting policy, despite the rising sums of money invested, will fail to meet the needs and preferences of those it sets out to serve. Full text: view source »

MW 740: Managing clinical uncertainty in older people towards the end of life: A systematic review of person-centred tools

Download the complete issue PDF 775 KB

These include tools that are person-centred, target multiple domains and provide an actionable treatment plan. Tools that are brief and easy to use and developed for the target population and are used nationally or internationally with strong psychometric properties were also identified as easier to implement and sustain. There are multiple internationally established tools such as the Resident Assessment Instrument and the Palliative Care Outcome Scale. It is important that the science builds upon established tools and the existing evidence, and that future areas of research link to the logic model. Key areas of research need to include high quality randomized controlled trials, using the logic model to inform key processes, causal mechanisms and intended outcomes and implementation requirements. Further development work to understand the causal mechanisms and linkages to outcomes in wider contexts including low- and middle-income countries is also indicated. Intervention development work needs to be done to support practitioners communicating clinical uncertainty to patients and families, including a training component. Full text: view source »

Disparities in telehealth use: How should the supportive care community respond?

SUPPORTIVE CARE IN CANCER | Online – 19 October 2021 – The increase in telehealth entails great opportunities to increase patients' access to cancer professionals and to streamline the workflow of health care providers during and beyond the COVID-19 period. Furthermore, telehealth holds tremendous potential for transforming the follow-up care, with a reduced burden for in-person visits. However, important concerns relating to associated regulatory frameworks, digital poverty and exclusion, and the respect of patients' preferences need to be addressed concomitantly to its deployment. The authors present a clear multilevel strategy and development of best practices required to address these barriers. First, at the patient level, they recommend a comprehensive assessment for patient-level barriers, including readiness to use telehealth, access to broadband, disabilities that limit telehealth use, and limited digital literacy. Telehealth access can be improved through interventions such as patient-level training, voice-activated commands, simpler designs, engaging informal caregivers, and finally improving interpreters' access to the telehealth portal. Second, at the health system level, it is crucial to design clinical workflows with a health equity lens to not exacerbate existing disparities but to increase access to care. To be genuinely successful, patient education and training for digital and telehealth tools must be built within clinical workflows to address disparities in access. While this training is often time-consuming and resource-intensive, it is an investment in excellent cancer care that is likely to increase patient engagement. One potential option is to leverage lay health workers and navigators for this type of training. Third, telehealth systems were primarily designed for the business community and have not been optimized for team-based care including interpreters, volunteers, and administrative personnel. These systems should address these barriers, informed by patient experience, and incorporate feedback from end-users, including both clinicians and patients on an ongoing basis. Full text: view source »

MW 739: The online representation of palliative care by practice, policy, and advocacy organizations: Definitional variations and discursive tensions

Download the complete issue PDF 550 KB

Beyond these definitional variations, meaning was generated through the representation of PC as a culture, connected to total care, compassion, and openness. Tensions arose around the concepts of autonomy, a natural death, and an emphasis on the quality of life away from death and dying. Overall, this study showed that the online information of PC is a potential source of confusion and might even contribute to its stigmatization. Insights are provided that may help improve clarity toward the public. Abstract (w. references): view source »


What do we know about the impact of the COVID-19 pandemic on hospices? A collaborative multi-stakeholder knowledge synthesis

AMRC OPEN RESEARCH | Online – 6 October 2021 – One of the major concerns during the pandemic is the strain it puts on healthcare services, especially when rates of COVID-19 infections within the population are at their peaks. Much of the media attention, and government decisions, focussed on overwhelmed hospitals and intensive care units. However, there was less attention afforded to other settings where a substantial amount of healthcare, including palliative and end-of-life care, took place – community health and social care services such as primary care, district nursing, or care homes. In particular, non-National Health Service (NHS) hospice services experienced rapid and sizeable changes affecting all aspects of care and support. Participants at a stakeholder event described how they felt that the role and importance of palliative care had been excluded by the government and the media. Providing hospice care during the pandemic has been incredibly challenging and this was further compromised by shortages of essential personal protective equipment, medicines, and staff. There was a view that this was made worse by hospices not being seen as "frontline NHS." Some participants reported feeling that the extra work done above-and-beyond normal duties had not been adequately recognised. If hospices had come under the remit of NHS services, it was observed, they might have received more attention from local and national government and not been an overlooked service. Full text: view source »


Patient and physician perspectives on engaging in palliative and healthcare trials: A qualitative descriptive study

BMC PALLIATIVE CARE | Online – 14 October 2021 – This study identified challenges related to conducting and participating in research as perceived by primary care physicians, patients, and caregivers/proxies. Themes from patient and caregiver interviews included time constraints, privacy concerns, lack of research familiarity, disconnect with research institution, self-perceived health status, and concerns with study randomization. Physician-identified barriers focused on time constraints and study randomization. Patient and caregiver recommendations for study recruitment included in-person recruitment, recruitment at healthcare providers' offices, recruitment via mail, additional study information, and frequent calls. Physician recommendations were related to placement of flyers at clinics, financial incentives, and formal events. Through this new understanding of the relationship between the patient, proxy, caregiver, and physician perspectives, this study provides a better understanding of how researchers could work with physicians to build participant trust in research by providing a "warm hand-off" during recruitment. Full text: view source »

MW 738: Access to palliative care: The primacy of public health partnerships and community participation

Download the complete issue PDF 600 KB

A review of hospice-patient care in the U.K., Australia, New Zealand, and Canada found that older people, ethnic minorities, people with non-cancer illnesses, and people living in rural locations or areas of social deprivation had unequal access to PC. But these findings merely confirm what many have observed for quite some time; the reality that PC service provision reaches only a minority of those who need PC and inequities of access substantially affect those from diverse communities. Viewed through a population-health lens, present efforts to promote equity and access to PC are limited in that professional service provision models are increasingly unable to cope with demand to meet population needs. Compounding this have been ongoing recommendations to improve access that either problematise needs as community deficits to be filled by services or focus on the expansion and marketing of, or professional development within, service providers. Unfortunately, there has been little by way of new approaches to what is an old problem. Collectively, this represents both a lack of imagination on integration of services with community and a failure to prioritise equity of access. Full text: view source »

International consensus-based policy recommendations to advance universal palliative care access from the American Academy of Nursing Expert Panels

NURSING OUTLOOK | Online – 6 October 2021 –The purpose of this consensus paper was to convene leaders and scholars from eight Expert Panels of the American Academy of Nursing and provide recommendations to advance nursing's roles and responsibility to ensure universal access to palliative care (PC). On behalf of the Academy, these evidence-based recommendations will guide nurses, policymakers, government representatives, professional associations, and interdisciplinary and community partners to integrate palliative nursing services across health and social care settings. Abstract: view source »

>New public health approaches to palliative care, a brave new horizon or an impractical ideal? An Integrative literature review with thematic synthesis

PALLIATIVE CARE & SOCIAL PRACTICE | Online – 6 October 2021 – Access to palliative care (PC) for marginalized communities is frequently problematized as a major challenge facing PC services. The traditional response of asking what services can do for the disadvantaged has been invigorated by a new wave of public health measures that embrace death and dying as social processes and ask, what can be done together with such communities as partners working in PC. Such work has generated a significant amount of academic, social and political interests over the last 20 years; however, we are yet to see a consistent and sustained change in approach from providers. The authors argue that this is due to inherent tensions that arise when modelling death, dying and loss as a unified and shared social process. Unresolved tensions destabilize the theoretical foundations and risk misrepresentation of core philosophies. In this integrative review of 75 articles, they present previously undiscussed areas of contention drawing from a pan-disciplinary field of theoretical and empirical evidence. The authors conclude that new public health approaches lack a consistent and unified theoretical approach. From philosophical, ontological and existential ideas relating to how different stakeholders conceptualize death, to the processes by which communities are motivated and their constituent members empowered through responsibilized notions of duty and reciprocity, there is little acknowledgement of the complex tensions at hand. Increasing academic and political initiative alone is not enough to progress this movement in a manner that achieves its full potential. Instead, we must pay greater attention to the tensions described. This article aims to work with such tensions to better define the landscape of collective moral responsibility in end-of-life care. The authors believe that this is crucial if PC is to avoid becoming a technical speciality with community and communitization reduced to a mere technical solution to more profound questions. Full text: view source »

MW 737: Access to palliative care reimagined

Download the complete issue PDF 850 KB

The first part of this article reviews the most common recommendations offered for increasing access to PC. The second part advocates an alternative way to address this challenge by employing the key practice methods of a new public health/health promotion approach to PC. Full text (click on pdf icon): view source »

Palliative and end-of-life care service models: To what extent are consumer perspectives considered?

HEALTHCARE | Online – 28 September 2021 – This article presents evidence found in a search of national and international literature for patient preferences concerning settings in which to receive palliative care (PC) and the appropriateness of different models of PC. The purpose was to inform end-of-life care (EoLC) policy and service development of the Western Australian Department of Health through a rapid review of the literature. It was found that consumer experience of PC is investigated poorly, and consumer contribution to service and policy design is limited and selective. Most patients experience a mix of settings during their illness, and evidence found by the review has more to do with qualities and values that will contribute to good EoLC in any location. Models of care do not make systematic use of the consumer data that are available to them, although an increasingly common theme is the need for integration of the various sources of care supporting dying people. It is equally clear that most integration models limit their attention to EoLC provided by health services. Transitions between settings merit further attention. The authors argue that models of care should take account of consumer experience not by incorporating generalised evidence but by co-creating services with local communities using a public health approach. Full text (click on pdf icon): view source »

Parents as advocates for pediatric palliative care

PEDIATRICS | Online – 1 October 2021 – Caring for a child with a serious or life-limiting illness presents many challenges for families and healthcare providers. Through that experience (and, many times, as it ends), parents are compelled to find and make meaning from their ultimate loss and the many losses along the way. In this Advocacy Case Study, the authors describe the experiences that led a bereaved mother to seek to harness the insights from her own family's loss to help support other families facing the challenges and complexities of a child's serious illness. Her family initially established a family foundation to advocate for palliative care (PC). She later partnered with her family's general pediatrician and the American Academy of Pediatrics to educate providers and bring parent voices to healthcare provider discussions. This work eventually led to the development of the Courageous Parents Network, a non-profit focused on making these parent and provider voices widely available to families and providers through a Web-based collection of videos, blogs, podcasts, and printable guides. Through these insights, the organization addresses feelings of isolation, anxiety, and grief. In addition, these voices illustrate the power and benefits of the growing acceptance of pediatric PC practices. Important lessons learned through these efforts include: 1) The power of stories for validation, healing, and understanding; 2) Opportunity to extend the reach of pediatric PC through provider education and skill-building; 3) Critical importance of the parent–provider advocacy collaboration; and, 4) Necessity of market testing and continuous improvement. Abstract: view source »

MW 736: "The system is well intentioned, but complicated and fallible": Interviews with caregivers and decision-makers about palliative care in Canada

Download the complete issue PDF 875 KB

The primary goal of the study was to identify key factors affecting perceptions of quality PC from the perspective of informal caregivers and decision-makers (e.g., program managers) and to understand how their experiences within the healthcare system may have influenced their perceptions. Nine caregivers and 11 decision-makers from Yukon Territory, British Columbia, Alberta, Ontario, & Nova Scotia shared their experiences in PC via interview or focus group. Three themes emerged: 1) The caregiver as anchor; 2) Bewildering system; and, 3) Patient, caregiver, and family-centered care. While these results resembled other studies on caregivers and individuals receiving PC, this study also uncovered systemic concerns. There was agreement between the two participant groups across most sub-themes, however only caregivers reported feelings of being trapped by the healthcare system and a general lack of respect from healthcare professionals. Additionally, caregivers stressed the importance of preserving some sort of normalcy in daily life despite the individual's illness. Caregivers are critical. The healthcare system expects them to help a great deal, but they often do not feel supported or respected and the system is lacking the capacity and resources to meet their needs while they are grieving loss and struggling to meet demands. Full text: view source »


Implementing automated prognostic models to inform palliative care: More than just the algorithm

BMJ QUALITY & SAFETY | Online – 17 September 2021 – Palliative care (PC) is associated with improved patient-centred and caregiver-centred outcomes, higher-quality end-of-life care, and decreased healthcare use among patients with serious illness. The Centre to Advance Palliative Care has established a set of recommended clinical criteria (or "triggers"), including a projected survival of less than 1 year, to help clinicians identify patients likely to benefit from PC. Nevertheless, referrals often occur within the last 3 months of life due in part to clinician overestimation of prognosis. A growing number of automated predictive models leverage vast data in the electronic medical record to accurately predict short-term mortality risk in real time and can be paired with systems to prompt clinicians to refer to PC. These models hold great promise to overcome the many clinician-level and system-level barriers to improving access to timely PC. First, mortality risk prediction algorithms have been shown to outperform clinician prognostic assessment, and clinician-machine collaboration may even outperform both. Second, algorithm-based "nudges" that systematically provide prognostic information could address many cognitive biases, including status quo bias and optimism bias, that make clinicians less apt to identify patients who may benefit from PC. Indeed, such models have been shown to improve the frequency of PC delivery and patient outcomes in the hospital and clinic settings. With that said, successful implementation of automated prognostic models into routine clinical care, at scale, requires clinician and patient engagement and support. Full text: view source »

Our best judgment

JOURNAL OF THE AMERICAN MEDICAL ASSOCIATION | Online – 16 September 2021 – Strong recommendations from physicians do not preclude partnerships with patients and families. A purely paternalistic approach would forego discussion and simply allow the clinician to decide. Physicians who make strong recommendations in partnership with patients and families are not acting with paternalism. Instead, they are acting as doctors should, by putting patients' values first and then putting those values into the appropriate medical context for families. But this partnership is always unequal. It was even for me, a physician with years of experience caring for seriously ill patients, trying to help my brother's family without the specific skill, knowledge, and experience held by that capable intensivist. For some clinical dilemmas, truly balanced medical alternatives exist. These decisions need to be based on patient preferences we have not yet divined. Incumbent on us is the responsibility to elicit the patient's wishes, priorities, and principles. We then must translate those into the medical reality, make clear recommendations based on that reality, and operationalize them as best we can. We must try to do so with at least a sense of humility and of the patient as an individual who is loved and appreciated. When even tragic realities are faced with honesty, clarity, kindness, and compassion, present and future pain can be at least in part alleviated. I am at peace with our decisions and Les' death because of these compassionate and capable professionals who spoke and acted decisively. We have far to go as a healthcare system in providing the kind of support received by my brother and his family as we confronted his ultimately fatal illness. But it begins with clinicians acting as professionals exercising their best judgment, helping us to see down the road to decide how to proceed. Full text: view source »

MW 735: Holding hope for patients with serious illness

Download the complete issue PDF 850 KB

Conversely, clinicians may be concerned when patients have unrealistic hopes for cure or a longer life; they may perceive a need to correct their patients' hopes to enable more informed decision-making. This tension presents a dilemma: How can clinicians help patients hold onto hope? Should hope be protected, even when being hopeful is unrealistic? Or should clinicians risk a loss of hope to ensure that patients understand their prognosis? These may be the wrong questions. Full text: view source »

Not dying alone: The need to democratize hospital visitation policies during COVID-19

MEDICAL LAW REVIEW | Online – 13 September 2021 – Of the many adverse outcomes that may result from the spread of … COVID-19, one stands out as particularly vile: the experience of dying alone. Many healthcare facilities in the U.S. and elsewhere adopted 'No-Visitor Rules' in an effort to contain the virus, but these rules mean that the countless people in nursing homes and hospital wards were isolated during their final hours of life. There is no epidemiological or U.S. federal or state requirement to prohibit visitation to (and thereby isolate) dying patients – even those with COVID-19. Instead, constructing pandemic-specific visitation policies is usually left to the discretion of hospitals and healthcare providers. Such policies aim to limit the risk of exposure, but fail to account for the individual and social costs associated with dying alone for patients, families, and frontline healthcare workers. As a result, the policies may be overly restrictive and actively cause harm. This article argues that U.S. hospital visitation policies need to be democratised to include the perspectives of community members and patients. By drawing on existing patient rights frameworks, this article outlines several legal strategies to reconceptualise hospital visitation policies as a civil rights issue. Full text: view source »

The impact of poverty and deprivation at the end of life: A critical review

PALLIATIVE CARE & SOCIAL PRACTICE | Online – 12 September 2021 – This critical review interrogates what we know about how poverty and deprivation impact people at the end of life (EoL) and what more we need to uncover. While we know that people in economically resource-rich countries who experience poverty and deprivation over the life course are likely to die younger, with increased co-morbidities, palliative care (PC) researchers are beginning to establish a full picture of the disproportionate impact of poverty on how, when and where we die. This is something the COVID-19 pandemic has further illustrated. The authors use a critical social science lens to investigate an eclectic range of literature addressing health inequities and is focused on poverty and deprivation at the EoL. The authors' aim was to see if we could shed new light on the myriad ways in which experiences of poverty shape the end of people's lives. They start by exploring the definitions and language of poverty while acknowledging the multiple intersecting identities that produce privilege … [and] … discuss poverty and deprivation as a context for the nature of PC need and overall EoL circumstances. In particular, the authors explore: total pain; choice at the EoL; access to PC; and, family caregiving. Overall, they argue that in addressing the effects of poverty and deprivation on EoL experiences, there is a need to recognise not just socio-economic injustice but also cultural and symbolic injustice. Too often, a deficit-based approach is adopted which both "others" those living with poverty and renders invisible the strategies and resilience they develop to support themselves, their families and communities. The authors conclude with recommendations for future research, highlighting in particular the need to amplify the voices of people with lived experience of poverty regarding palliative and EoL care. Full text: view source »

MW 734: Enduring physical or mental suffering of people requesting medical assistance in dying

Download the complete issue PDF 700 KB

They identified 5 themes: 1) Patient's context and history (e.g., past experiences, lack of disease modifying treatments); 2) Physical symptoms (e.g., chronic pain, fatigue); 3) Psychosocial symptoms (e.g., social isolation, or inability to communicate); 4) Sense of control; and, 5) Irreversibility. These themes were used to create a framework that describes the suffering of patients requesting MAiD. Patients who request MAiD describe how their disease causes suffering through physical symptoms, psychological symptoms and loss of control that is irreversible. These domains of suffering interact with their personal history and context leading to a reality that is unacceptable and irreversible. MAiD assessors' working definition of 'grievous and irremediable suffering' as documented in their assessments is consistent with the body of literature on this topic. MAiD assessments could be enhanced with more information about existential aspects of suffering and the impact of illness on meaningful life roles. Abstract (w. references): view source »


Out-of-hours services and end-of-life hospital admissions: A complex intervention systematic review and narrative synthesis

BRITISH JOURNAL OF GENERAL PRACTICE | Online – 6 September 2021 – This review provides evidence as to why issues experienced during out-of-hours (OoH) may lead to end-of-life (EoL) hospital admissions (circumstances), how such admissions occur (processes), and by whom they are instigated (mechanisms). Importantly, although the findings may be unsurprising to many clinicians and EoL care researchers, this review highlights significant gaps in the evidence. Knowledge on how the identified factors interact with each other (for example, how circumstances may affect processes or how different mechanisms may respond to different circumstances) is currently lacking. Also lacking is evidence of effective interventions to improve care to prevent potentially avoidable EoL hospital admissions. The issues highlighted are pertinent to EoL care provision at all times of the day and night, although they seem to be particularly acute when they occur OoH. What this review suggests is that, although OoH EoL care can often be readily resolved by hospital admissions, it comes with multiple challenges that appear to be widespread and systemic. Some of these challenges might be prevented by action in-hours or better management of unscheduled care episodes within the community leading to reduced hospital admissions, which is what most recent empirical evidence seems to suggest. Bearing in mind, however, that the OoH periods comprise the majority of the week, service managers, commissioners, and policymakers need to continue to strive for integrated and comprehensive approaches to EoL care, 24/7. Full text: view source »


Solomon Center for Health Law & Policy and the Center to Advance Palliative Care launch innovative palliative care policy-tracking database

YALE LAW SCHOOL | Online – 8 September 2021 – In recent years, state policy-makers have increasingly paid more attention to palliative care (PC), improving access and quality along the way. The importance of PC … and the need for innovative policy-making to support it, has become clearer over the past year and a half. The COVID-19 pandemic increased the demand for PC and exacerbated many of the challenges it addresses, straining hospitals and communities across the country. But tracking developments in policies and regulations across states has been difficult. States maintain their own data on legislation and regulations, with no centralized platform bringing together information from across the country. The Solomon Center for Health Law & Policy and the Center to Advance Palliative Care aim to fill the gap with an innovative new initiative – the Palliative Care Policy GPS (GPS) – a publicly accessible and regularly updated database that tracks state policies on PC and related services. The GPS tracks policies related to PC across the 50 states, Washington DC, the Indian Health Service, the Department of Veterans Affairs, and U.S. territories. By consolidating the landscape of state policy-making, the GPS offers a new tool for healthcare professionals, policy-makers, PC champions, payers, and purchasers to search, compare, gain new ideas, and stay up-to-date on policy developments. view source »

MW 733: "Reflection and soul searching": Negotiating nursing identity at the fault lines of palliative care and medical assistance in dying

Download the complete issue PDF 575 KB

Although a minority of participants did express categorical opinions around the (non) legitimacy of assisted death as an ethical EoL care option, most engaged in an ongoing and sometimes painful process of questioning and self-examination. Their ethical reflections were more nuanced than simply dismissing medical assistance in dying (MAiD) as incompatible with PC philosophy; yet this idea of incompatibility weighed heavily as they reasoned through their experiences and questioned their own perspectives. Nurses described grappling with the finality of assisted death, which contradicts their belief in the telos of PC; when adequately resourced, PC should be available to support people to live well before death. At the same time, commitment to important PC values such as the non-abandonment of dying people and respecting peoples' individual EoL choices reveal the possibility of overlap between the ethos of assisted death and that of PC nursing. Drawing on scholarship in feminist ethics, this study sheds light on the moral identity work that assisted dying catalyzes amongst PC nurses. The authors highlight what is at stake for them as they navigate a delicate tension in responding ethically to patients whose suffering motivates an interest in assisted death, from within a wider professional collective that upholds a master narrative about the incompatibility of assisted death and PC. Abstract: view source »

The Netherlands

Development of the Dutch structure for integrated children's palliative care

CHILDREN | Online – 27 August 2021 – This article describes the developments in The Netherlands over the past 15 years. The Foundation for Children's Palliative Expertise (PAL) was established as a nationwide initiative committed to improving palliative care (PC) for children countrywide. This led to the development of the first hospital-based children's PC team in 2012, which expanded to a total of seven teams adjacent to children's university hospitals. Regional networks for children's PC were developed in parallel to these teams from 2014 onwards. The networks are a collaboration of professionals from different disciplines and organisations, from hospital to homecare, and have covered the aspects of children's PC nationally from 2019 onwards. They are connected through the Dutch Knowledge Centre for children's PC. This centre was established in 2018 by the PAL Foundation in collaboration with the Dutch Association for Pediatrics. In 2013, the first evidence-based guideline … provided access to knowledge for parents and healthcare providers, and in 2017, a format for an individual PC plan was established. Within the Knowledge Centre for children's PC, a physician's support centre for dilemma's regarding the end of life of children was set up. The efforts to children's PC embedded in the regular Dutch healthcare insurance are ongoing. Full text (click on pdf icon): view source »


Exploring the psychological aspects of palliative care: Lessons learned from an interdisciplinary seminar of experts

JOURNAL OF PALLIATIVE MEDICINE, 2021;24(9):1274-1279. Palliative care (PC) has been shown to help patients live well with serious illness, but the specific psychological factors that contribute to this benefit remain investigational. Although support of patient coping has emerged as a likely factor, it is unclear how PC helps patients to cope with serious illness. The therapeutic relationship has been proposed as a key element in beneficial patient outcomes, possibly undergirding effective patient and family coping. Understanding the distress of patients with psychological depth requires the input of varied clinicians and thinkers. The complex conceptual model developed draws upon the contributions of medicine, nursing, psychology, spiritual care, and social work disciplines. 'Healing Beyond the Cure: Exploring the Psychodynamic Aspects of Palliative Care' was held in May 2019 at Harvard University's Radcliffe Institute for Advanced Study. This special report describes the key psychological aspects of PC that we believe underlie optimal adaptive coping in PC patients. Outlined are key areas for further development in PC research, education, and clinical practice. The discussion held at this meeting became the basis for a planned series of articles on the psychological elements of PC that will be published in the Journal of Palliative Medicine on a monthly basis during the fall and winter of 2021-2022. Abstract: view source »

MW 732: Negative media portrayal of palliative care: A content analysis of print media prior to the passage of voluntary assisted dying legislation in Victoria

Download the complete issue PDF 575 KB

Summative content analyses revealed coverage of PC was frequently (74%) in the context of a discussion of euthanasia. Only small numbers of articles described the activities of PC, and even fewer its potential beneficial impact, while a quarter (26%) described PC was inadequate to relieve suffering. These findings suggest that current coverage of PC in the media may contribute to negative public views and misconceptions. An opportunity exists to enhance media coverage, and in turn, improve the public understanding of care in serious illness. Abstract: view source »


Increasing our understanding of non-physical suffering within palliative care: A scoping review

PALLIATIVE & SUPPORTIVE CARE | Online – 25 August 2021 – Non-physical suffering is emotional, psychological, existential, spiritual, and/or social in nature. While palliative care (PC) is a discipline dedicated to the prevention and relief of suffering – both physical and non-physical – little is known about existing research specific to non-physical suffering within the context of PC. This scoping review helps to fill this gap. Losses, worries, and fears comprise patients' primary sources of non-physical suffering. Patients face numerous barriers in expressing their non-physical suffering to healthcare providers. The idea that patients can choose how they perceive their circumstances, thereby minimizing their non-physical suffering, is pervasive in the research. The nature of non-physical suffering experienced by family caregivers and PC clinicians is revealed in the review. The unique and sensitive interplay between non-physical suffering and both palliative sedation and requests for hastened death is also evident. Overall, seven themes can be identified: 1) Patients' experiences of non-physical suffering; 2) Patient coping mechanisms; 3) Efforts to measure non-physical suffering; 4) Palliative sedation; 5) Requests for hastened death; 6) Family suffering; and, 7) Clinician suffering. This is the first scoping review to map PC's research specific to suffering that is social, emotional, spiritual, psychological, and/or existential in nature. Its findings expand our understanding of the nature of non-physical suffering experienced by patients, families, and PC clinicians. The review's findings have significant implications for front-line practice and future research. Abstract (w. references): view source »


Family and healthcare professionals managing medicines for patients with serious and terminal illness at home: A qualitative study

HEALTH SERVICES DELIVERY & RESEARCH | Online – Accessed 24 August 2021 – As patients' health deteriorated, family caregivers (FCG) assumed the role of a care coordinator, undertaking the everyday work of organising and collecting prescriptions and storing and administering medicines around other care tasks and daily routines. Participants described the difficulties of navigating a complex and fragmented system and the need to remain vigilant about medicines prescribed, especially when changes were made by different professionals. Access to support, resilience and coping capacity are mediated through the resources available to patients, through the relationships that they have with people in their personal and professional networks, and, beyond that, through the wider connections – or disconnections – that these links have with others. Healthcare professionals often lacked understanding of the practical and emotional challenges involved. All participants experienced difficulties in communication and organisation within a healthcare system that they felt was complicated and poorly coordinated. Having a key health professional to support and guide patients and family caregivers (FCGs) through the system was important to a good experience of care. The study identified two key and inter-related areas in which patient and family caregiver experience of managing medicines at home in end-of-life (EoL) care could be improved: 1) Reducing work and responsibility for medicines management; and, 2) Improving co-ordination and communication in healthcare. It is important to be mindful of the need for transparency and open discussion about the extent to which patients and FCGs can and should be co-opted as proto-professionals in the technically and emotionally demanding tasks of managing medicines at the EoL. Full text: view source »


Advancing the Economics of Palliative Care: The Value to Individuals and Families, Organizations, and Society

CALIFORNIA | University of Southern California Schaeffer Center for Health Policy & Economics – Accessed 28 August 2021 – Current research assessing the economic outcomes of palliative care (PC) is limited, and policymakers, payers, patients and clinicians need more information to appropriately and systematically implement PC in the U.S. Filling this research gap can help identify optimal ways to deliver and pay for PC across settings as well as strategies to encourage PC referrals and uptake. Moreover, projecting future needs for PC through modeling and other analytic techniques can inform care provision, future research and, ultimately, policy decisions. In 2020, the USC Schaeffer Center for Health Policy & Economics established an advisory panel to identify and consider how to address the gaps in research at the interface of economics and PC. The panel includes clinicians, economists and select participants from health system, payer and policy domains. This background paper, authored by the panel chairs, aims to set the stage for developing a consensus-based research agenda that advances PC in the U.S. and makes a case for funders to support this research. Download at: view source »

MW 731: Effect of early palliative care on end-of-life healthcare costs: A population-based, propensity score-matched cohort study

Download the complete issue PDF 550 KB

The authors addressed limitations noted in previous meta-analyses by using consistent exposure, intervention, and outcome definitions over an 11-year period of time. Their PC definition included a broad array of PC services from multiple settings, not just within inpatient hospital admissions. As well, although there are other observational cohort studies comparing early versus late PC, the authors used propensity score matching to reduce selection bias. Moreover, their home care sub-analysis allowed them to control uniquely for additional prognostic covariates (e.g., high pain or poor health instability) that are known to be associated with referrals to PC, but are typically unmeasured confounders in other studies. A major strength of this study is the use of a population-based cohort of all cancers, which creates a sample size considerably greater than previous randomized trials examining this topic and contributes to the external validity and real-world evidence that outside controlled settings, PC can reduce health system costs. In other words, the large population-based sample strengthens the credibility that the results were not because of any particular cancer center, any specific PC program, or cancer type. This study, combined with the growing evidence base, underscores the need to invest in hospital and home-community PC programs as a strategy to not only save the health system money but also address hospital bed overcrowding. Full text: view source »

U.K. (Scotland)

Palliative care research promotion in policy and practice: A knowledge exchange process

BMJ SUPPORTIVE & PALLIATIVE CARE | Online – 16 August 2021 – In palliative care (PC), as in many areas of medicine, there is a considerable amount of research conducted that makes sound recommendations, but does not result consistently in improved care. For instance, though PC has been shown to benefit all people with a life-threatening illness, its main reach continues to be for those with cancer. Drawing on relational models of research use, the authors set out to engage policymakers, educators, clinicians, commissioners and service providers in a knowledge exchange process to identify implications of research for Scottish PC priorities. First, they mapped the existing PC research evidence in Scotland. The authors then organised evidence review meetings and a wider stakeholder event where research producers and users came together to co-produce implications of the evidence for policy, education and practice. They used questionnaires and key stakeholder feedback meetings to explore impacts of this process on research uptake and use immediately after the events and over time. In this article, the authors reflect on this knowledge exchange process and the broader context in which it was set. They found that participation fostered relationships and led to a rich and enthusiastic exploration of research evidence from multiple perspectives. Potential impacts relating to earlier identification for PC, education and need-based commissioning ensued. The authors make suggestions to guide replication. Full text: view source »

Publishing Matters

Structural racism and scientific journals – a teachable moment

JOURNAL OF THE AMERICAN MEDICAL ASSOCIATION, 2021;326(7):607-608. Racism is pervasive and deeply entrenched in every aspect of society, and academic medicine, and scientific publishing are not immune. Structural racism may influence multiple facets of the publishing arena, including the composition of journal leadership, editorial boards, the peer review process, published content, and more. There is work to be done among medical schools, academic centers, research funders, and major journals, including JAMA and the JAMA Network Journals. Recent events at JAMA involving the posting of a podcast and tweet that were racist, discriminatory, painful, and harmful, as well as subsequent developments over the ensuing months, represent an important teachable moment. A teachable moment is an opportunity to deliver a message about a concept in such a way that a light goes on and promotes change. As problematic as this incident was, there is an opportunity to make it a teachable moment and an inflection point. This moment should lead to a meaningful change in culture that is not swept aside after an apology, follow-up podcast, strong statement, or leadership transitions, and it also may serve as an important opportunity for self-examination and meaningful change for all medical journals. Full text: view source »

MW 730: A national position statement on adult end-of-life care in critical care

Download the complete issue PDF 950 KB

A systematic literature search was conducted between June and July, 2020… Preference was given to the most recent Australian or Australasian research evidence, where available. Once the practice recommendations were drafted in accordance with the research evidence, a clinical expert review panel was established. The panel comprised clinically active ACCCN members with at least 12 months of clinical experience. The clinical expert review panel participated in an eDelphi process to provide face validity for practice recommendations and a subsequent online meeting to suggest additional refinements and ensure the final practice recommendations were meaningful and practical for critical care nursing practice in Australia. ACCCN Board members also provided independent review of the position statement. This position statement is intended to provide practical guidance to critical care nurses in the provision of adult EoLC in Australian critical care settings. Full text: view source »


Dissemination, use, and impact of a community-based, conversational advance care planning intervention: Ripple effects of the Swedish DöBra cards

PALLIATIVE CARE & SOCIAL PRACTICE | Online – 10 August 2021 – Despite increasing interest in community-based advance care planning (ACP) interventions, few studies investigate the societal impact of such initiatives. The DöBra cards, a Swedish adaptation of the GoWish cards, were first used for ACP conversations in a participatory action research project and later, due to popular demand, made available for purchase by the general public. Key factors influencing dissemination of the DöBra cards included "champions" with a mandate within their context or organization, policy documents including use of the cards, media coverage, and presentations of the cards in various settings. The DöBra cards were adapted for use individually and in groups in different private, professional, and organizational settings. Perceived benefits of the cards included acting as an icebreaker in initiating end-of-life (EoL) conversations and having preformulated statements to reflect upon. Other positive experiences included discussions on different interpretations of card statements, thus opening new perspectives regarding EoL. The DöBra cards functioned both as a means to raise EoL issues in different contexts, and as an end in themselves, for example, by facilitating ACP conversations for those with serious disease. Impact also included personal development and strengthening of private and professional relationships, with potential to affect EoL care. Full text: view source »


COVID grief has cracked us open: How clinicians respond could reshape attitudes to bereavement

BRITISH MEDICAL JOURNAL | Online – 10 August 2021 – People working in healthcare experience grief professionally as well as personally and societally. Attitudinal shifts are needed … to improve access to formal and informal support and make grief a less lonely experience. Doctors' openness and willingness to show vulnerability could help. Grief and death have something crucial in common: an incidence of 100%. The ache of grief is natural and unavoidable as we face the losses of everyday life – separation, serious illness, injury – and the pain of close bereavement, whether sudden or expected. Death and grief can come upon us at any time, regardless of whether our day job is saving lives. The COVID-19 pandemic starkly shows grief's ubiquity: some four million people have died globally, leaving over 35 million people bereaved. The horror of loss is writ large each day in newspapers worldwide and on social media. The grief entailed in practising medicine has never been so clear, pictured in the faces of exhausted nurses and doctors, the marks from their masks deep and red. The pandemic has raised barriers for grieving people seeking support and laid bare the necessity of better bereavement services – as well as highlighting the need for us all to make space for grief, other people's and our own. Clinicians have an important role to play in helping bereaved people; they are also particularly exposed to grief, and openly acknowledging this could help shift societal attitudes. Full text: view source »

Special Feature: Caring for the terminally ill in prisons – An International Perspective on Palliative and Hospice Care in Prisons and Correctional Facilities.

MW 729: Harnessing new and existing virtual platforms to meet the demand for increased inpatient palliative care services during the COVID-19 pandemic: A 5-key themes literature review of the characteristics and barriers of these evolving technologies

Download the complete issue PDF 600 KB

Patients are generally satisfied with virtual visits and value the healthcare team's efforts, regardless of which devices are used. PC patients, however, are a complex, heterogenous population with differing needs. A one-size-fits all model will not suit this line of care, not even during a pandemic. Thus, redesigning hospice delivery systems should be done thoughtfully and in consideration of when in-person versus virtual visits are most appropriate, as well as take into account a community's cultural values and socioeconomic barriers to digital HC. The decision for which patients receive what format of care should remain an individual choice for both the patient and the family and staff supporting them. Full text: view source »


Primary care physicians' perspectives of serious illness conversations at community health centers

JOURNAL OF GENERAL INTERNAL MEDICINE | Online – 29 July 2021 – Seriously ill patients in low-income and minority populations have lower rates of advance care planning. Initiatives that promote serious illness (SI) conversations in community health centers (CHCs) can reach broad, diverse patient populations. This qualitative study explored the experiences of primary care physicians in conducting SI conversations at CHCs in order to understand challenges and needs in this setting. Eight themes emerged: 1) Structured approaches to SI conversations are useful even in longstanding patient-doctor relationships; 2) Discussion of prognosis is meaningful, but difficult; 3) Emotional work is humanizing, but draining; 4) Poverty and under insurance are high priorities; 5) Social context affects patient readiness; 6) Communication barriers take multiple forms; 7) Patient characteristics make it "easier" or "harder" to initiate the SI conversation; and, 8) Time constraints limit the ability to meet multiple patient needs. Physicians at CHCs identified challenges in SI conversations at personal, interpersonal, organizational, and societal levels. These challenges should be addressed by initiatives that aim to increase SI conversations in primary care, and especially at CHCs. Abstract (w. references): view source »

Social model hospice home: A concept analysis

JOURNAL OF HOSPICE & PALLIATIVE NURSING | Online – 27 July 2021 – The term social model hospice first appeared late in the 20th century as a label for a complementary model to medical hospice care. Two decades later, the term is inconsistently defined and used by scholars, healthcare providers, public consumers, and those within the movement. The purpose of this review is to trace the development of the concept and confirm an evolving definition… Unique antecedents include presence of a resource crisis, unmet needs falling outside the scope of medical hospice care, and desire to experience death outside the medical system and/or personal home. Attributes include a dedicated home, round-the-clock, individualized end-of-life care (EoL) care; care option when dying at home becomes unmanageable; collaboration with medical hospice services; nonprofit organization funded by community philanthropy; environment to support loved ones; and, community volunteer involvement. Noted consequences are effective EoL care for dying patients and their families, innovative healthcare design, nationwide network of like-minded providers, and platform for EoL community education. Clarity of the concept will facilitate access to EoL care, further the model's development, formalize research endeavors, and foster community education. Abstract: view source »

MW 728: The universality of palliative care philosophy: A case study from India

Download the complete issue PDF 750 KB

However, given the continuing importance of religion in many areas of PC, we could wonder how secular contemporary PC really is. This article argues that the universality of PC philosophy resides in its susceptibility to contextualization. PC has become a global success story because people all over the world committed to PC's principles and ideas have contextualized these and developed models of PC delivery and even philosophy that are adapted to the local socioeconomic and cultural-religious contexts. This article analyzes PC in India to illustrate this point, describing contextualized models of PC delivery and showing that PC physicians and nurses in India draw inspiration from their local context and religiosity. Full text: view source »


Young adults understanding and readiness to engage with palliative care: Extending the reach of palliative care through a public health approach: A qualitative study

BMC PALLIATIVE CARE | Online – 28 July 2021 – This study is the first study to explore in-depth how young adults perceive palliative care (PC) and identify what factors affect their understanding and engagement. Influenced by a prevalent culture that placed PC out of their reach and relevance unless directly affected, young adults in this study had a limited understanding of PC. They related what they had seen, heard and experienced in their families, community and on study placement which revealed a much narrower scope of PC than advocated in global policy and academia. The family as the context of experiences was significant in participant accounts, dictating the level of understanding and potential for engagement. At the intrapersonal and interpersonal levels, the study findings have the potential to inform the practice of PC, highlighting how experiences, especially within families, impact young adults' understanding of PC. Full text: view source »


New developments in end-of-life teaching for Roman Catholic healthcare: The implications of Samaritanus Bonus ("The Good Samaritan")

AMERICAN JOURNAL OF HOSPICE & PALLIATIVE MEDICINE | Online – 29 July 2021 – The Vatican's chief doctrinal body, the Congregation for the Doctrine of the Faith, recently released Samaritanus Bonus ("The Good Samaritan"), a letter focused on ethical obligations surrounding the care of patients who are critically ill or nearing the end of life (EoL). Historically, similar documents have had significant implications insofar as all Catholic healthcare institutions, including those within the U.S., are bound to provide services in accordance with Catholic teaching. Furthermore, Catholic healthcare has widespread institutional influence by virtue of the high market-share in over a third of U.S. counties. Analogous to the influence of Catholic healthcare over access to reproductive healthcare, binding doctrinal statements such as this have the potential to significantly impact treatment decisions for patients approaching EoL. A complete review of the letter is beyond the scope of this article; rather, the authors highlight two key areas which may contribute to increased conflict between Catholic healthcare and secular society. First page view (w. references): view source »

MW 727: Context and mechanisms that enable implementation of specialist palliative care Needs Rounds in care homes: Results from a qualitative interview study

Download the complete issue PDF 475 KB

The paper also offers a helpful contribution to the care home literature by identifying core factors affecting uptake of interventions, such as staff readiness for change, creating mechanisms to facilitate knowledge transfer and the role and process of facilitation. The paper offers a unique contribution to the literature in documenting and describing the context and ways in which this Needs Round intervention is successfully implemented. It offers the starting point for generating an overall programme theory of change, which future research can explore and expand. Future studies would helpfully examine perspectives of residents and relatives on the implementation, as well as health and social care staff from beyond the care homes. Full text: view source »


Missing in action: Reports of interdisciplinary integration in Canadian palliative care

CURRENT ONCOLOGY | Online – 19 July 2021 – Palliative care (PC) has an interdisciplinary tradition and Canada is a leader in its research and practice. Yet even in Canada, a full interdisciplinary complement is often lacking, with psychosocial presence ranging from 0-67.4% depending on the discipline and region. The authors sought to examine the most notable gaps in care from the perspective of Canadian palliative professionals. Canadian directors of PC programs were surveyed with respect to interdisciplinary integration. Similar to previous reports, the authors found that psychology was under-represented yet highly valued, and despite social work's relative high presence in care, participants in this study reported a higher need for more. Reasons for these gaps might include lack of funding, distribution of funding, or the prioritization of physical symptoms over emotional symptoms. It is possible that teams are filling the gaps with other clinicians, which may meet some patient needs. However, clinicians are still reporting a need for specialized psychosocial professionals, especially psychologists and social workers, in this study. Future research should investigate the barriers in hiring psychosocial professionals in PC. This may help us understand how Canadians can promote and advocate for these services. Full text: view source »


Differences between for-profit and non-profit hospice agencies in the U.S. Medicare population

JOURNAL OF GENERAL INTERNAL MEDICINE | Online – 18 July 2021 – The authors data show most Medicare beneficiaries are enrolled in for-profit vs non-profit hospice agencies, which cost Medicare 34% more per beneficiary. Higher total costs of care directly relate to longer lengths of stay in for-profit agencies, even when accounting for lower reimbursement rates for days 61 and greater. This difference could be explained by for-profit agencies enrolling more patients with dementia, who live longer in hospice than cancer patients, who have greater acuity yet shorter survival in hospice. Cost of care was higher in for-profit agencies even though they provided higher proportion of routine home care days. While previous studies have evaluated association of hospice ownership status with setting and timing of hospice care, and there have been investigative and federal criminal inquiries into enrollment of low-acuity patients by for-profit hospice agencies, this is the largest and most representative study to date. Given that for-profit hospices enroll a greater relative proportion of patients who are racial and ethnic minorities, likely because of their growth in urban areas, understanding the differences in care they provide is particularly important from a racial equity perspective as well. One limitation is that the authors lacked data regarding hospice location. Further work should attempt to incorporate patient and family-based measures of quality or satisfaction, which these data sources lacked. This study highlights the need to carefully monitor for-profit hospices to ensure that the patient-centered mission of hospice is retained, and patients receive high quality care to the very end. Hospice is an essentially moral program and care needs to be taken to retain its original vision. Hospice payment reform tying reimbursement to clinical quality outcomes should be considered. Further research studying quality and transitions of care and enrollment practices of patients from for-profit nursing homes is needed. Full text: view source »

MW 726: Insights from a community-based palliative care course: A qualitative study

Download the complete issue PDF 625 KB

It is necessary to integrate this kind of teaching in educational palliative care (PC) programs. Students' apprehension of the patient and their family beyond the medical relationship allowed them to better appreciate the holistic claim of PC. Bringing students directly from the hospital to the patients in their homes shows the benefits of an integrated healthcare system. Students realize the possibilities and limits of the different PC models of service provision. Healthcare educators should consider evaluating and changing their clinical teaching environment, and exploring community-based learning as the 'Patient Home Visits' model, adapting it to their own needs. This concept could, conceivably, be transferred to other medical faculties and subjects. Further analysis of the topics and additional recording of patient and faculty would be interesting for future projects. Full text: view source »


Priorities and opportunities for palliative and end-of-life care in U.K. health policies: A national documentary analysis

BMC PALLIATIVE CARE | Online – 14 July 2021 – National and international calls to strengthen palliative care (PC) through policy have had limited success. The brief references to PC identified in policies imply that a comprehensive, national level effort to improve palliative and end-of-life care is not a major priority for policymakers in the U.K. Even though PC is increasingly recognised as a human right, the role of PC can be poorly understood and recognised, which may hinder political support. Indeed, PC was notably absent from the WHO guidance on maintaining essential health services during the COVID-19 pandemic, even though it is arguably an essential component of the pandemic response. Framing PC as a way to deliver explicit health priorities may be more effective than direct approaches. Furthermore, aligning PC with mainstream health and social care priorities could help to reduce known inequalities in access to care such as by age, socioeconomic position and diagnosis. The authors of this study identify three clear policy priorities that may be opportunities to promote provision of PC in the U.K; calls to increase provision of PC should be framed with these levers in mind. For ongoing research studies, particularly those testing interventions, inclusion of outcomes relating to the priorities identified will help promote impact following completion of studies. While the authors' results are based on U.K. data, their methods can be replicated in other world regions to identify locally relevant policy levers. Full text: view source »


Reimagining the inpatient palliative care consult: Lessons from COVID-19

AMERICAN JOURNAL OF MANAGED CARE | Online – 12 July 2021 – As the number of inpatients with advanced age and chronic conditions rises, so too does the need for inpatient palliative care (PC). Despite the strong evidence base for PC, less than 50% of all inpatient PC needs are met by inpatient consults. Over the past several months in epicenters of the COVID-19 pandemic, PC providers have responded to the increased need for PC services through innovative digital programs including telepalliative care programs. In this article, the authors explore how PC innovations during COVID-19 could transform the PC consult to address workforce shortages and expand access to PC services during and beyond the pandemic. They propose a 3-pronged strategy of bolstering inpatient telepalliative care services, expanding electronic consults, and increasing training and educational tools for providers to help meet the increased need for PC services in the future. Full text: view source »

MW 725: A literature review of possible barriers and knowledge gaps of general practitioners in implementing advance care planning in Ireland: Experience from other countries

Download the complete issue PDF 550 KB

This review aimed to explore the literature to examine challenges GPs may face in employing ACP into clinical practice. Fourteen studies were condensed and critically appraised through CASP (Critical Appraisal Skills Program), which concluded that the quality of the studies was high. Through this review, knowledge gaps and barriers for GPs regarding ACP were identified. Barriers for implementing ACP into practice were categorized into three major themes: 1) Barriers for the GPs; 2) Barriers in the healthcare system; and, 3) Barriers regarding the patient. These included insufficient time, complexity of the ACP documents themselves, uncertainty of the disease prognosis, and the ultimate fear of inducing anxiety and loss of hope in patients. Full text: view source » (550 KB)


Palliative care in the emergency department: A qualitative study exploring barriers, facilitators, desired clinician qualities, and future directions

PALLIATIVE & SUPPORTIVE CARE | Online – 8 July 2021 – Palliative care (PC) providers perceived as successful in their work in the emergency department (ED) were described as autonomous, competent, flexible, fast, and fluent in ED language and culture. Barriers to ED-PC integration included the ED environment, lack of access to PC providers at all times, the ED perception of PC, and the lack of a supporting financial model. Facilitators to ED-PC integration included proactive identification of patients who would benefit from PC, ED-focused PC education and tools, PC presence in the ED, and data supporting ED-PC. Increased primary PC education for ED staff, increased automation, and innovative ED-PC models were seen as areas for future growth. The authors' findings provide useful information for PC programs considering expanding their ED presence, particularly as this is the first study to their knowledge that examines traits of successful PC providers in the ED environment. Their findings also suggest that, despite growth in the arena of ED-PC, barriers and facilitators remain similar to those identified previously. Future research is needed to evaluate the impact that ED-PC initiatives may have on patient and system outcomes, to identify a financial model to maintain ED-PC integration, and to examine whether perceptions of successful providers align with objective measures of the same. Abstract (w. references): view source »

Research Matters

Research cooperative groups in pediatric palliative care research

PALLIATIVE MEDICINE REPORTS | Online – Accessed 6 July 2021 – Research cooperative groups aim to facilitate collaborative and rigorous palliative care (PC) research. The purpose of this article is to demonstrate how cooperative groups are taking formal and sustainable steps with commitment to pediatric PC research programs and provide an example of how one cooperative group is implementing these innovative efforts to partner with programs to integrate pediatrics on an expanding scale. Details are described for how pediatric studies can benefit from cooperative group infrastructure and expertise. In turn, the authors describe how cooperative groups can benefit from collaborating on pediatric studies through broadening of data dictionaries, data repositories, and reach in PC research communities. Full text: view source »

MW 724: Culturally sensitive palliative care in humanitarian action: Lessons from a critical interpretive synthesis of culture in palliative care literature

Download the complete issue PDF 950 KB

This literature describes culture as it influences perspectives on death and dying, expectations of PC, and challenges to providing culturally sensitive care. A key pattern highlighted in articles with respect to the culture and PC literature is that culture is invoked in this literature as a sort of catch-all for non-white, non-Christian, indigenous practices, and preferences for PC. It is important that humanitarian healthcare providers and organizations aiming to enact their commitment of respect for all persons through attention to potential culturally specific approaches to pain management, suffering, and dying in specific crisis settings do so without reproducing othering and reductionistic understandings of what culturally sensitive care in humanitarian crises settings involves. This article clarifies and unpacks the diverse influences of culture in PC with the goal of supporting the preparedness and capacity of humanitarian healthcare providers to provide PC. In doing so, it aids in thinking through what constitutes culturally sensitive practice when it comes to PC needs in humanitarian crises. Providing such care is particularly challenging but also tremendously important given that healthcare providers from diverse cultures are brought together under high stress conditions. Abstract (w. references): view source »


Bereavement care for ethnic minority communities: A systematic review of access to, models of, outcomes from, and satisfaction with, service provision

PLOS ONE | Online – 30 June 2021 – This review reveals a stark lack of evidence about bereavement care for ethnic minority populations. There is no research literature outlining the role of family, friends and existing networks, other than the suggestion that this type of support, including the role of religious communities and faith, is especially important. From the limited evidence available, there are barriers at each level of the three identified components of bereavement care outlined by the National Bereavement Alliance for ethnic minority groups, limiting accessibility. In particular, issues relating to the availability, awareness and dissemination of information were identified, which ideally should be available on a universal basis; furthermore, barriers at components one and two may also impact on awareness and access to bereavement counselling. A lack of relevant, culturally competent training for healthcare professionals can limit access and awareness of potential support services. Additionally, these services may not be structured in a way which meets the needs of ethnic minority groups. For example, practical, legal and financial support may be needed and deemed more important by users during the initial bereavement period. A shortage in reporting of facilitators to care was notable, although ensuring readily available information and inclusive approaches (e.g., broad invitations to groups and events) were found to improve accessibility. There were few examples of existing models of care, a real absence of evidence about outcomes and levels of satisfaction for those from an ethnic minority background who receive bereavement care and no identified studies which focused on users who were children. Full text: view source »

Research Matters

Alternative consent models in pragmatic palliative care clinical trials

JOURNAL OF PAIN & SYMPTOM MANAGEMENT, 2021;62(1):183-191. Palliative care (PC) research raises a host of ethical concerns. Obtaining informed consent from seriously ill patients and their families is often perceived as an additional burden. Alternative approaches to traditional written informed consent reflect the changing nature of modern trial design, embracing real-world effectiveness and pragmatic clinical trials with those who are seriously ill. Ethicists, clinical investigators, and regulatory bodies have acknowledged the challenges to rigorous, meaningful, and generalizable research across diverse patient populations in real-world settings. The purpose of this article is to describe how these clinical trial designs have driven innovation in methods for achieving informed consent, with a focus on PC research. In this article, the authors describe and provide examples of consent waivers and three types of alternative approaches to consent, including broadcast notification and integrated and targeted consent. They also present their experiences in an ongoing PC clinical trial, specifically using broadcast notification. Working with participants and regulatory oversight organizations, investigators can address the limits of traditional written informed consent and adopt innovative consent models to advance the science of PC. Research is now needed to determine the impact of these differing consent models on clinical trial recruitment, enrollment, and retention, as well as participants' informed understanding of their research participation using such models. Abstract (w. references): view source »

MW 723: How have case mix, cost and hospital stay of inpatients in the last year of life changed over the past decade? Evidence from Italy

Download the complete issue PDF 575 KB

This study extends the evidence from the international literature, mainly for the Canadian context and documenting the use and costs of healthcare services in the last year of life in different hybrid settings (by mixing different healthcare services/settings). Compared to a 2004-2006 British Columbia study and a 2003-2004 Saskatchewan study,1,2 which provided estimated average expenditure in the last year of life ranging from $20,705 to $31,492 Canadian dollars (€13,816 to €21,020), the authors found a lower cost per deceased patient. However, a clear comparison with these estimates is not straightforward considering that the Canadian studies used different patient inclusion criteria or healthcare services; in fact, the first study examined hospital, ambulatory, and prescription drug costs, while the second included long-term care and home care. In addition, a 2010-2013 Ontario study estimated the last-year-of-life costs of all deceased patients for all healthcare services and found an average cost of inpatient care of $30,872 (€20,573).3 The difference between this results and the findings of previous studies can be partially explained by the exclusion of cancer patients at end of life (EoL) in our study. In this context, other previous studies have analysed EoL healthcare costs by focusing on specific target patients in the U.S. population, for example, adults aged ≥ 65 years or selected disease-specific cohorts, such as cancer patients and patients with heart failure. Again, the different populations studied make a clear comparison with our estimates difficult. Full text: view source »

1. 'Income inequities in end-of-life health care spending in British Columbia, Canada: A cross-sectional analysis, 2004-2006,' International Journal of Equity in Health, published online 16 March 2011. [Noted in Media Watch 21 March 2011 (#193, p.10)] Full text: view source »
2. Costs of end-of-life care: Findings from the Province of Saskatchewan,' Healthcare Quarterly, 2009;12(3): 50-58. [Noted in Media Watch 20 July 2009 (#106, p.8)] Full text: view source »
3. 'Palliative care delivery across health sectors: A population-level observational study,' Palliative Medicine, 16 June 2016. [Noted in Media Watch, 20 June 2016, #467 (p.15)] Full text: view source »


Video hospice consultation in COVID-19: Professional and patient evaluations

BMJ SUPPORTIVE & PALLIATIVE CARE | Online – 23 June 2021 – Using video consultations (VC) during the COVID-19 pandemic facilitated the continuation of holistic support such as virtual well-being sessions, alongside remote clinical care. The authors' service evaluation illustrates that hospice support, even when involving potentially sensitive conversations, can still be provided remotely using video-conferencing technology and this is acceptable to patients and carers and consistent with recent studies. Although most health professionals (HPs) had not supported patients using video-conferencing technology prior to the COVID-19 pandemic nor had any formal training, and despite many having concerns about providing VC, the majority were successfully able to offer a range of hospice services to patients/carers including some of a sensitive nature. It was noted by HPs and patients that there were many situations, including existing medical conditions, which may present barriers or cause a patient to decline a VC. HPs therefore need to carefully consider individual patients' circumstances to optimise the use of VC. Despite HPs reporting that some patients had declined VC, most patients/carers having experienced a VC stated they would be happy to participate using VC again when appropriate. Unsurprisingly however, many stated that, given the choice, they would always prefer face-to-face consultations. Full text: view source »


Specialty palliative care in COVID-19: Early experiences from the Palliative Care Quality Collaborative

JOURNAL OF PALLIATIVE MEDICINE | Online – 22 June 2021 – Specialty palliative care (PC) teams have served many roles in the care for patients with COVID-19 and their families. Among the preliminary findings drawn from 306 case reports submitted to the Palliative Care Quality Collaborative, the authors found a preponderance of older, male patients with underlying cardiovascular disease being the most common underlying serious illness. Surprisingly, nearly 10% of PC consults were for patients with no underlying serious illness before COVID-19. PC teams were most frequently consulted to address goals-of-care and support families. Among requests for symptom management assistance, shortness of breath was the most common, consistent with the clinical presentation of COVID-19. PC teams were also called to provide support to colleagues and staff. Shared decision-making supported by PC teams led to changes in care plans, modifications in resuscitation status preferences, and enabling of patient-family, family-clinician communication despite limitations in family visiting. Challenges related to PC delivery during the COVID-19 era included strained communication with patients resulting from masking due to personal protection equipment, significant visitation barriers for family, rapid transitions to tele-communication with family members, and limited discharge options in the community. Full text: view source »

MW 722: Decision-making and poor prognosis: When death is silenced by action

Download the complete issue PDF 700 KB

Stemming from an ethnographic study carried out in a hematology-oncology transplant unit in a Montreal [Quebec, Canada] pediatric hospital, the authors discuss the decision-making process (or lack thereof) when a patient faces poor prognosis and the change of trajectory from a curative/disease directed to a palliative perspective. The intricate relationship between science, caregiver, and care receiver sustains action even when (near) death is the probable outcome. Abstract: view source »


"Don't forget the children": A qualitative study when a parent is at end of life from cancer

SUPPORTIVE CARE IN CANCER | Online – 18 June 2021 – There is a need for honest and clear communication from health and social care professionals (HSCPs) to parents surrounding the reality of a parent's poor prognosis, to enable a systematic approach of preparing the children for the death of their mum or dad. While parents often feel ill-equipped to prepare their children for the death of a parent from cancer and desire supportive guidance from healthcare teams, this is a challenging aspect of care for HSCPs to provide. Consequently, family-centred care is often inadequate in practice. There is a need for HSCPs to reassure parents that by involving the children early in the end-of-life experience, when the ill-parent is "well enough" to parent, enables them to be actively involved in supporting their child through one, if not the greatest life changing event. This enables the sharing of sadness, providing love and support that only a parent can. Earlier preparations are likely to prevent "crisis management" as death becomes imminent in the final weeks and days of life and promote better adjustment for the children in the future. Full text: view source »


Experiences of fathers of children with a life-limiting condition: A systematic review and qualitative synthesis

BMJ SUPPORTIVE & PALLIATIVE CARE | Online – 17 June 2021 – Children with a life-limiting condition often require extensive and complex care, much of which is provided by their parents at home. There is a growing body of research that aims to understand the experiences of these parents, but the majority of this research is from mothers' perspectives, meaning that fathers' experiences are not well understood. Findings from 30 studies were included, representing the experiences of 576 fathers of children with a range of diagnoses including cancer, cystic fibrosis, genetic and neurological conditions. Themes detailed fathers' experiences of uncertainty and shock around the time of their child's diagnosis, their accounts of a "new normal," difficulties in discussing their emotions, forming relationships with and seeking support from professionals and working fathers' role conflicts. They discussed the life-changing nature of their child's diagnosis, an event that affected all aspects of their lives from everyday activities, to their relationships, spirituality, values and ambitions. Fathers experience many difficulties in response to their child's diagnosis and ongoing treatment. Findings of this review highlight the need for healthcare professionals to recognise individual family dynamics and the evolving role of the father. Fathers' responses are not widely understood, and research that directly addresses their own well-being is warranted. Abstract: view source »

MW 721: Intensity of outpatient physician care in the last year of life: A population-based retrospective descriptive study

Download the complete issue PDF 500 KB

The authors did not examine the extent of shared care or communication among physicians, and the results do not suggest this is lacking. Their findings do suggest a need for understanding how best to organize care among multiple physicians to meet patients' changing needs over the last year of life. Although home visits by physicians to patients who are at the end of life (EoL) are associated with reduced likelihood of emergency department visits and hospital death, the results of this study are consistent with other studies reporting home visits are infrequent. In the last year of life, patients have many encounters with various physicians in outpatient settings, and the volume and mix vary by EoL trajectory. Family physicians are the predominant specialty. Those who plan healthcare models of the EoL should consider support for family physicians to coordinate care and ways to optimize the complementary roles of different physicians while maintaining adequate continuity for patients. Full text: view source »


Public perception of palliative care: A survey of the general population

PALLIATIVE CARE & SOCIAL PRACTICE | Online – 8 June 2021 – The authors aimed to generate a better understanding of the public's perspectives of palliative and end-of-life (EoL) care in a predominantly German-speaking region of Switzerland. Visitors at an exhibition about palliative care (PC) in six locations provided hand-written answers on provided cards to two statements: 1) If I hear the term "palliative care" I think of… and, 2) When thinking about my own end of life, the following is important to me… The term palliative care (PC) was mostly associated with positive terms such as relief of symptoms and EoL with dignity. This is similar to other findings which show that the public associates PC with positive aspects such as good communication by professionals, delivery of comfort and improvement of quality of life. Understanding public perceptions about PC provides important information to address any potential misconceptions of the meaning of PC in this population. Among others, maintaining one's own dignity as well as dying without suffering was essential to the visitors at the exhibition. The insights from this study could be used to educate the public regarding the specifics of PC and to eliminate the stigma that PC is only intended for the last days of life. The results may also help healthcare professionals to better understand how the public view PC. New strategies to engage the general population in PC initiatives need to be established. Therefore, it is essential that educational initiatives be developed for the public about the importance of an interprofessional and holistic PC approach early in the disease trajectory. Full text: view source »


Actual and missed opportunities for end-of-life care discussions with oncology patients: A qualitative study

JAMA NETWORK OPEN | Online – 10 June 2021 – In this secondary analysis of outpatient oncology visits, end-of-life (EoL) discussions were rare and missed opportunities for these discussions were common. When oncologists did discuss EoL, they framed it around trade-offs, anticipatory guidance, and acknowledging patients as experts. In these instances, oncologists adeptly responded to patients' emotions and expressed empathy. In contrast, missed opportunities for EoL discussions were characterized by failure to acknowledge patients' concerns over disease progression, dying, or burdensome adverse effects; oncologists often responded to such concerns with optimism about prognosis or pessimism about treatment discontinuation. Although the authors recognize that not every patient or appointment may necessitate an EoL discussion, all patients in this study had stage IV malignant neoplasm and their oncologists had previously acknowledged that they "would not be surprised if they were admitted to an intensive care unit or died within one year." Despite the urgent necessity of EoL discussions within this population, we found far more missed opportunities than actual discussions in this analysis. Full text: view source »

MW 720: Frames and counter-frames giving meaning to palliative care and euthanasia in The Netherlands

Download the complete issue PDF 825 KB

The frames do not belong to a specific stakeholder but a pattern can be seen in their use that is related to interests and ideology. Two frames about PC were constructed: the Fear of death frame, which stresses the hopeless "terminality" of PC and the Heavy burden frame, in which PC is too big a responsibility for the relatives of the patient. In addition, two counter-frames were constructed: PC as a contributor to Quality of life and Completion. With regard to euthanasia, five frames were identified that lead to a problematising definition: Thou shalt not kill, Slippery slope, Lack of willpower, I am not God, and Medical progress. Five counter-frames offer a non problematising definition of euthanasia in the debate: Mercy, Prevention, Triumph of reason, Absolute autonomy, and Economic utility thinking. The debate in The Netherlands on euthanasia and PC is characterized by a plurality of angles that goes beyond the bipolar distinction between the pros and cons of euthanasia and PC. Only with an overview of all potential frames in mind can an audience truly make informed decisions. The frame matrix is not only useful for policymakers to know all perspectives when joining public debate, but also to healthcare workers to get into meaningful conversations with their patients and families. Full text: view source »


Are public health measures and individualised care compatible in the face of a pandemic? A national observational study of bereaved relatives' experiences during the COVID-19 pandemic

PALLIATIVE MEDICINE | Online – 31 May 2021 – This research represents the first U.K. study of bereaved relatives' views about quality of care and family support provided during the last days of life and highlights the challenges and emotions experienced during the COVID-19 pandemic. COVID-19 studies from The Netherlands, U.S. and China, have explored acute grief and the psychological impact during the bereavement period. This study, however, closely examines the quality of the dying experience which can have subsequent impact on grief. Though challenging, public health measures in response to a pandemic can be actioned in ways that maintain high quality of end-of-life care for patients and their families. Care services must acknowledge the significance of individual deaths and ensure active approaches to support those who are bereaved. This may achieve headway in healing the barriers between what was required to limit the spread of the virus and the subsequent compromise on individualized care. Recognising dying, communicating holistic aspects of care, and enabling visits whenever is possible, should continue to be priorities, during the ongoing pandemic. These approaches should be allied with risk stratification measures to help identify those in most need of bereavement support, including the identification of those unable to visit. Full text: view source »


Most U.S. adults may lack knowledge about palliative care

AMERICAN ASSOCIATION FOR CANCER RESEARCH | Online – 4 June 2021 – The majority of surveyed Americans had an inadequate understanding of palliative care (PC), and frequency of healthcare utilization was one determinant of knowledge. In contrast to hospice, which provides comfort care for patients who have stopped treatment and are near the end of life (EoL), PC serves as an adjunct to life-sustaining treatments by addressing the side effects of treatment or symptoms of the disease. "Despite the known benefits of PC and its endorsement by the American Society of Clinical Oncology and the National Comprehensive Cancer Network, we have not seen an increased uptake of PC by those who need it most," said Motolani Ogunsanya, an assistant professor at the University of Oklahoma Health Sciences Center, reporting on the findings of newly published research.1 "A common misconception is that PC is only for EoL care when, in fact, it can begin at any point in the disease course." Only 11% of survey respondents reported adequate knowledge of PC. view source »

1. 'Predictors of palliative care knowledge: Findings from the Health Information National Trends Survey,' Cancer Epidemiology, Biomarkers & Prevention, published online 4 June 2021. Abstract: view source »

MW 719: Multi-disciplinary supportive end-of-life care in long-term care: An integrative approach to improving end of life

Download the complete issue PDF 500 KB

Considering the identified priorities, the authors developed a 5-point strategy to providing supportive EoL care within LTC. Three lists of interventions required to optimize supportive EoL care in Canadian LTC facilities include: clinical practice change, communication and culture change, and organizational policy change. Clinician educators can use the authors' findings to support the provision of palliative education and skills training, as well as mentorships. Administrators should explore opportunities to reconfigure LTC culture through communication changes, as well as the physical environment through facility design modifications. The authors have also shown the benefits of multi-method research that integrates qualitative interviews, quantitative surveys, and multi-stakeholder participatory methods in the development of evidence-based strategies to improve care within LTC. Residents and family caregivers should also be engaged in research and change efforts targeted at optimizing EoL care provision within LTC. Full text: view source »


Modelling palliative and end-of-life resource requirements during COVID-19: Implications for quality care

BMJ OPEN | Online – 25 May 2021 – Our cultural bias towards healthcare heroics risks overlooking the essential contribution of palliative and end-of-life care (EoLC) to a pandemic. Armed with the structure to outline palliative care (PC) pandemic planning, this study allows realistic modelling of the essential ingredients to prepare, plan and deliver a PC pandemic response tailored to local work patterns and resources. Without anticipating the resource constraints, equitable care is compromised. This pandemic is a reminder of the vital need for collaborative, flexible working and quality data collection to inform preparation and planning to prevent deaths with physical and psychosocial distress. There is limited evidence on cost-effectiveness of PC overall, with research complicated by the heterogeneity of specialist PC services in the U.K. During the pandemic, the authors have found no evaluation comparing the financial cost of care for those affected who do and do not receive PC, and this is an area that requires greater research and understanding. Emphasising EoLC does not negate the importance of life-saving or even life-sustaining care but acknowledges the moral imperative to provide care for everyone in a pandemic, even where a cure is not possible. The model presented here provides evidence of the predicted resource essential to provide quality PC during a pandemic. Full text: view source »

Research Matters

Economic evaluation of palliative care interventions: A review of the evolution of methods from 2011 to 2019

AMERICAN JOURNAL OF HOSPICE & PALLIATIVE MEDICINE | Online – 24 May 2021 – Economic evaluation of palliative care (PC) is challenging but also a necessity given the disproportional share of healthcare expenditure for patients at the end-of-life (EoL). While the use of quality adjusted life years (QALYs) in measuring outcomes in PC has been debated in the past, recent guidelines for pharmacoeconomic evaluations calls for the use of cost-utility analysis. For that reason, a literature review was completed to examine whether methods of PC economic evaluations have evolved since the deficiency in cost-utility analysis was last reported in 2011. Despite the small increase in cost-utility studies since 2011, the methods of PC economic evaluations have not evolved significantly. Aligned with the guidelines for the economic evaluation of healthcare programs in several countries (e.g., Canada, U.K. and the U.S.), researchers are encouraged to compare PC interventions in terms of costs and QALYs from a payer (e.g., Ministry of Health) or a societal (e.g., also taking into account productivity losses or out of pocket expenditures) perspective. To truly evaluate value for money and improve decision-making, it is also very important that researchers take into account in their analyses the different types of uncertainty inherent to the economic evaluation according to best practices (e.g., sampling uncertainty for trial-based economic evaluations, parameter uncertainty when conducting model-based economic evaluations). Researchers should follow reporting guidelines for economic evaluations of healthcare programs. Full text: view source »

MW 718: New hope for advancing neuropalliative care

Download the complete issue PDF 600 KB

INPCS plans to build an interdisciplinary professional network, develop educational tools, help disseminate good practices, and galvanise research to fill knowledge gaps. These activities, in turn, should promote the acceptance of PC and advance its integration into standard neurological practice. By working in partnership with other organisations with long expertise in improving practices, such as European Academy of Neurology, INPCS has the opportunity to help spur a rapid change. Full text: view source »


Responding to the fear of dying alone during COVID-19 pandemic

JOURNAL OF PUBLIC HEALTH | Online – 13 May 2021 – If people are unable to say goodbye in the traditional way, then "creative rituals" of mourning and of remembrance will need to be created. One way may be via the online environment (Zoom, Skype, Facetime) or social media (Facebook and Messenger) where this has become a more familiar sight in recent years. Indeed, as we move further along in the post-COVID-19 world, it is necessary to periodically reassess and readjust our approach to best address the needs of people. Telehealth and virtual meetings have become "new normal." In fact, doctors and nurses go the extra mile to care for their patients by providing telecommunication between isolated patients and their families. Such conversation sometimes takes place at the doors to the ICU, over the phone, or in front of the hospital, as families beg to see their loved ones before they die. A seemingly simple request, which in other times would be encouraged, has become an ethical and healthcare dilemma. Therefore, "providing safe and effective palliative care, including end-of-life (EoL) care, becomes especially vital and especially difficult." There is an urgent need to address the fear of dying alone during and after the COVID-19 pandemic. Finding "creative spaces" of compassionate love and belongingness to patients could mean supporting meaningful companionship at the EoL. Alleviation of all forms of suffering should be one of the immediate responses of all. We have to be aware that while COVID-19 will come to an end because of the vaccines, the effects could be longer term. Full text: view source »


Priorities and opportunities for palliative and end-of-life care in U.K. health policies: A national documentary analysis

BMC PALLIATIVE CARE | In print – Accessed 18 May 2021 – Access to high-quality palliative care (PC) is inadequate for most people living and dying with serious illness. Policies aimed at optimising delivery of palliative and end-of-life care (EoLC) are an important mechanism to improve quality of care for the dying. The extent to which PC is included in national health policies is unknown. We aimed to identify priorities and opportunities for palliative and EoLC in national health policies in the U.K. Documentary analysis consisted of: 1) Summative content analysis to describe the extent to which palliative and EoLC is referred to and/or prioritised in national health and social care policies; and, 2) Thematic analysis to explore health policy priorities that are opportunities to widen access to palliative and EoLC for people with serious illness. Relevant national policy documents were identified through web searches of key government and other organisations, and through expert consultation. Documents included were U.K.-wide or devolved (i.e., England, Scotland, Northern Ireland, Wales), health and social care government strategies published from 2010 onwards. Fifteen policy documents were included in the final analysis. Twelve referred to palliative or EoLC, but details about what should improve, or mechanisms to achieve this, were sparse. Policy priorities that are opportunities to widen palliative and EoLC access comprised three inter-related themes: 1) Integrated care – conceptualised as reorganisation of services as a way to enable improvement; 2) Personalised care – conceptualised as allowing people to shape and manage their own care; and, 3) Support for unpaid carers – conceptualised as enabling unpaid carers to live a more independent lifestyle and balance caring with their own needs. Although information on palliative and EoLC in the U.K. health and social care policies was sparse, improving PC may provide an evidence-based approach to achieve the stated policy priorities of integrated care, personalised care, and support for unpaid carers. Aligning existing evidence of the benefits of PC with the three priorities identified may be an effective mechanism to both strengthen policy and improve care for people who are dying. Abstract: view source »

MW 717: 50 Years of advance care planning: What do we call success?

Download the complete issue PDF 850 KB

The author's discussion suggests that the current promotion of ACP is not always engaging critically with the original ACP intentions and may even pursue notions of success that may run contrary to respecting autonomy. The risk of this may especially be the case when high participation rates are taken as indicators of success for institutional ACP programs. The author further suggests that Kutner's two original aims of protecting patient autonomy and preventing charges of wrong-doing are near impossible to achieve in conjunction, because their simultaneous pursuit fails to acknowledge that patients and carers have opposing needs for reassurance about possible judgment errors. The author concludes that the most realistic idea of success of modern ACP is an acknowledgement of the importance of ongoing dialogue about what constitutes appropriate care and a diversity of aims rather than any kind of advance, contractual insurance in the face of controversy. Abstract (w. references): view source »


Continuums of change in a competence-building initiative addressing end-of-life communication in Swedish elder care

QUALITY HEALTH RESEARCH | Online – 12 May 2021 – Competence-building is a multifaceted and relational concept that encompasses knowledge, skills, and empowerment among staff, and requires support from the organization. This study suggests that an approach to staff competence-building for end-of-life (EoL) conversations based on repeated reflection, discussions, and knowledge exchange, can support changes in: staff approaches to EoL communication; assumptions about what constitutes quality in EoL care; and, acknowledgment of staffs' own roles in EoL decision-making processes. Individual and joint reflection, using an appropriate and user-friendly tool, enabled staff to approach their own mortality and expand their frames of reference by shifting perspectives of EoL care, which were important mechanisms of change in this study. The authors' results add relevant nuance and detail about how reflection, involving introspection and extrospection, can prompt experiential learning and may contribute to the development of death literacy. The change continuums presented here indicate core aspects to include in EoL competence-building programs and death education, whereas the mechanisms provide insight into how death literacy might be fostered. These findings are important to consider in future educational initiatives to improve EoL communication between stakeholders in various care contexts. Nevertheless, the question of whether increased death literacy translates to changes in staff behavior in care practice remains critical for future research to explore. Full text: view source »


Cicely Saunders, "total pain" and emotional evidence at the end of life

MEDICAL HUMANITIES | Online – 12 May 2021 – In this article, the author explores how Cicely Saunders championed the hospice movement and initiated what became palliative care (PC) by representing her emotional connections with others. She became friends (and, once or twice, fell in love) with dying patients and encouraged others to follow her example in listening to patients' descriptions of pain. Her approach was radical at a time when she believed doctors routinely "deserted" dying patients because it urged them to understand another's embodied pain as inextricably bound up with the emotional impact of a terminal diagnosis. Saunders' attention to how patients expressed their experience is summed up in her term "total pain," which communicates how an individual's pain is a whole overwhelming experience, not only physical but also emotional, social and spiritual. Previous research frames "total pain" in terms of narrative, emphasising Saunders' focus on listening to her patients and her use of narratives as evidence in advocating for cultural and institutional change, both of which the author understands as engaging with a patient's emotional reality. However, as Saunders' ideals become mainstreamed as PC and amid calls for "narrative palliative care," the author uses evidence from Saunders' extensive written output alongside archival material to suggest that, just as PC is by its nature not a single specific intervention, "total pain" should not be understood as simply narrative. Building on existing work in this journal questioning the primacy of conventional understandings of narrative in the medical humanities, the author demonstrates how Saunders' prominent use of fragments and soundbites alongside longer case narratives demonstrates the limits of narrative, particularly when someone is dying. Abstract: view source »

MW 716: Diversity in representations and voices of terminally ill people in end-of-life documentaries

Download the complete issue PDF 675 KB

While white patients often appeared as central characters in the narratives presented, black, indigenous and people of color patients were more frequently marginalized and given much less opportunity to reflect on their experiences with terminal illness. As we build public awareness and continue to represent seriously ill patients across many forms of visual media, this study can serve as a foundation of knowledge for the current state of representation and help characterize the need for more inclusive representation of a diverse group of people facing serious illness. Full text: view source »


Integration of palliative care into all serious illness care as a human right

JAMA HEALTH FORUM | Online – 22 April 2021 – Deaths from COVID-19 are approaching 600,000 in the U.S. and 3 million worldwide. As ICUs have reached or exceeded capacity in many hospitals, concerns have grown about the ethical dimensions of rationed care. But many of these focused on who gets a ventilator, rather than how to provide palliative care (PC) to those who are seriously ill, including those treated with ventilators and those who may not want or cannot get a ventilator. Early on in the pandemic, clinical leaders at Mount Sinai Medical Center in New York City, New York, realized that although they had a PC team, they did not have enough clinicians prepared to lead the crucial conversations with patients and families about end-of-life decision-making and symptom management. There is always a consistent need for the deep expertise of PC teams, but COVID-19 has highlighted that every clinician needs knowledge and skills in the fundamentals of PC. Access to PC is a human right. Our inability to deliver it in the setting of COVID-19 and other serious illnesses is a human rights violation. Each of us is a stakeholder. Health systems and clinicians are charged with meeting the holistic needs of patients and family caregivers in the face of serious illness. Education, payment and health equity reforms are needed now to hold clinicians accountable to those we serve. Full text: view source »

Research Matters

Stakeholder-engaged process for refining the design of a clinical trial in home hospice

BMC MEDICAL RESEARCH METHODOLOGY | Online – 30 April 2021 – Clinical trials in home hospice settings are important to build the evidence base for practice, but balancing the burden and benefit of clinical trial conduct for clinicians, patients, and family caregivers is challenging. A stakeholder-engaged process can help inform and refine key aspects of home hospice clinical trials. The aim of this study was to describe a stakeholder-engaged process to refine, design, and implement aspects of an educational intervention trial in home hospice, including recommendations for refining intervention content and delivery, recruitment and enrollment strategies, and content and frequency of outcome measurement. Five initial biweekly teleconferences with a panel of interprofessional and two family caregiver stakeholders resulted in recommendations for recruitment strategy, enrollment process, measurement frequency, patient inclusion, and primary care physician notification of the patient's trial involvement. The panel continues to participate in quarterly teleconferences to review progress and unexpected questions and concerns. Panelist reflections reveal personal and professional benefit from participation. Full text: view source »

MW 715: Evaluation of a commissioned end-of-life care service in Australian aged care facilities

Download the complete issue PDF 600 KB

The RACFs cared for 277 residents. There were 24 preintervention deaths and 44 in the intervention period (28 (64%) referred to CiMaS). There was widespread support for the service. Families felt supported and knowledgeable about what was happening. Care plans were almost always recorded in health records. Patients' symptoms appeared to be better recognised and managed. Staff and Facility managers felt more support than previously, with more responsive and reliable out of hours support. There were significant care improvements in patients not referred to CiMaS, suggesting a learning effect. GPs observed improvements in nursing staff confidence and support to families. Transfers to hospitals fell by two-thirds for both referred and non-referred patients compared with the year before implementation. The program was both efficient and effective. Abstract: view source »


Death Café, Bauman and striving for human connection in "liquid times"

MORTALITY | Online – 28 April 2021 – Death Café is the most popular and well-known of a "new wave" of social initiatives associated with the death awareness movement; a new social movement which began in America in the 1970s, chastising modernity's disenchantment with death. As this study shows, this social franchise … has spread to upwards of 34 countries around the world in a relatively short space of time, and has gained a large amount of media attention. The authors offer the first critical analysis of Death Café by asking: "Why this form and why now?" Their interviews with Death Café organisers in a wide range of countries revealed striking similarities in the perception that Death Café was needed to encourage and elicit "death talk" not permissible in other public spaces... However, the analysis presented here also suggests that Death Café is in part a response to the profound loneliness experienced in liquid modernity. The authors argue that the form in which Death Café takes – pop-up, fluid spaces not requiring long-term commitment and with the possibility to "stage" atmospheres designed to promote instant identification and "sharing" – are a case of Baumanian "peg communities" and liquid modernity par excellence. The topic of conversation – death – imagined as secret and transgressive, and with its claims to authenticity, is a primary conductor for connection within the space of the café and gives rise to a particular liquid modern form of intimacy or "communion." Death Café also conforms to another feature of liquid modernity – inescapable individual responsibilisation whereby individuals are expected to find or make their own meaning, in death as in life. The "survival strategy" which Death Café and the death-positive movement more widely purport to offer is to remove people's death anxiety by normalising death-themed conversations and turn continuous engagement with death into a form of regular inoculation. As a social initiative which is ostensibly about death education and awareness-raising, Bauman's theories permit a different, more radical view of Death Café: as a form which exemplifies the specific condition and organisation of life in liquid modernity. Full text: view source »


The role of advance care planning in cancer patient and caregiver grief resolution: Helpful or harmful?

CANCERS | Online – 20 April 2021 – Cancer patients and their family caregivers (FCGs) experience various losses when patients become terminally ill, yet little is known about the grief experienced by patients and caregivers and factors that influence grief as patients approach death. Additionally, few, if any, studies have explored associations between advance care planning (ACP) and grief resolution among cancer patients and caregivers. This study examined changes in grief over time in patients and their FCGs and whether changes in patient grief are associated with changes in caregiver grief. The authors also sought to determine how grief changed following the completion of advance directives. Results suggest synchrony, whereby changes in patient grief were associated with changes in caregiver grief. The authors also found that patients who completed a living will experienced increases in grief, while caregivers of patients who completed a do-not-resuscitate order experienced reductions in grief, suggesting that ACP may prompt "grief work" in patients while promoting grief resolution in caregivers. Full text: view source »

MW 714: Activating patients and families to improve palliative care: The waiting room revolution

Download the complete issue PDF 625 KB

To increase access to PC at a population level, we need a waiting room revolution, one where patients and families shift from being passive to being active in shaping their experience with serious illness. A co-design approach with patients and families can help overcome barriers to accessing PC and improve the overall experience. Full text: view source »


Models will only get us so far: Planning for place of care and death

AGE & AGEING | Online – 20 April 2021 – If aligning place of care and death with the dying person's preference is considered an outcome, the process of advance care planning (ACP) can be a useful mechanism for determining and preparing for such preferences. However, place is not the only "outcome" that matters to many people – they may be more concerned about how they are cared for, or who they can see, or how much control they feel they have. ACP can consider a much wider remit than just location of care, and it may be the processes of discussion that most beneficial for some. Importantly, decisions – in how they are made, enacted, and experiences – are inherently relational, involving and impacting the dying person and also those who care about them and for them, including health and social care professionals. There is therefore further scope to consider what good outcomes look like for this wider network and how to support them all through the changing contexts of care during the end of life and the COVID-19 pandemic. Models can be useful to support conversations, but they will only get us so far. Full text (click on pdf icon): view source »

Research Matters

The power of specialty palliative care: Moving towards a systems perspective

THE LANCET HAEMATOLOGY, 2021;8(5):E376-E3821. Three palliative care (PC) clinical trials were presented at the 2020 American Society for Clinical Oncology Annual Meeting. The heterogeneity in populations, models of care, study design, and assessment of clinical outcomes across these three studies show the broad opportunities for research into interventions for PC. In this Viewpoint, the authors summarise the characteristics of these studies, discuss their novel features and lingering questions, and offer a suggestion for further expanding the focus of clinical trials for delivery of PC in the future. They argue that the propensity to characterise PC as if it was a clinical or biomedical intervention hampers the design and evaluation of complex clinical interventions that influence clinicians, systems for healthcare delivery, individual patients, and their families. Summary: view source »

MW 713: Examining the role of specialist palliative care in geriatric care to inform collaborations: A survey on the knowledge, practice and attitudes of geriatricians in providing palliative care

Download the complete issue PDF 475 KB

This was a voluntary anonymous online survey, distributed to all full members of the Australian & New Zealand Society of Geriatric Medicine. 168 completed responses were received; 58.3% were female and 36.6% had over 20 years of clinical experience. Most geriatricians (85%) reported caring for patients in their last 12 months of life represented a substantial aspect or most of their practice. Geriatricians overwhelmingly believed they should coordinate care (84%) and derived satisfaction from providing PC (95%). The majority (69%) believed all patients with advanced illness should receive concurrent specialist PC. Regarding knowledge, participants scored an average of 13.5 correct answers out of 18 in a Modified Palliative Care Knowledge Test. Geriatricians find reward in providing generalist PC to their patients; however, potential exists for improved collaborations with specialist PC services. An evidence base for geriatric patients who benefit most from specialist PC services is needed to improve resourcing, collaborative practice and ultimately PC delivery. Full text: view source »


The association between varying levels of palliative care involvement on costs during terminal hospitalizations in Canada from 2012 to 2015

BMC HEALTH RESEARCH | Online – 13 April 2021 – Inpatient palliative care (PC) is associated with lower inpatient costs; however, this has yet to be studied using a more nuanced, multi-tiered measure of inpatient PC... Using a population-based cohort of Canadians who died in hospital, the authors' objectives were to: describe patients' receipt of PC and active interventions in their terminal hospitalization; and, examine the relationship between inpatient PC and hospitalization costs. There were 250,640 adults who died in hospital. Mean age was 76, 47% were female. The most common comorbidities were: metastatic cancer (21%), heart failure (21%), and chronic obstructive pulmonary disease (16%). Of the decedents, 95,450 (38%) had no PC involvement, 98,849 (38%) received low involvement, and 60,341 (24%) received medium to high involvement. Controlling for age, sex, province and predicted hospital mortality risk at admission, the cost per day of a terminal hospitalization was: $1,359 … (no involvement), $1175 … (low involvement), and $744 … (medium-high involvement). Increased involvement of PC was associated with lower costs. Future research should explore whether this relationship holds for non-terminal hospitalizations, and whether PC in other settings impacts inpatient costs. Full text: view source »

Hospice care providers' experiences of grappling with medical assistance in dying in a hospice setting: A qualitative descriptive study

BMC PALLIATIVE CARE | Online – 12 April 2021 – The introduction of medical assistance in dying (MAiD) in Canada represents a new and evolving choice for end-of-life care (EoLC) which has affected the dynamic of care within the hospice environment. The experience of navigating MAiD within a non-provider context challenged care providers to rethink and redefine their roles and left some uncertain about how best to support their patients and others. Care providers worked to navigate the unchartered territory of the MAiD trajectory within a non-provider hospice setting and sought to remedy the moral complexities, philosophical fit, and practical challenges of MAiD, while focusing on provision high quality patient-centered care. The initiation and provision of MAiD gave rise to a disrupted, distinct, and fragmented care pathway, one that excluded most of those at the frontline of hospice care. The different pathway for those who chose MAiD may lead some care providers to struggle with relational challenges and interpersonal unease. To deliver high quality palliative EoLC, framed through a patient and family approach and emphasizing whole person care in the hospice care environment, each member of the interdisciplinary care team needs to be able to access necessary education and supports. Therefore, a multi-faceted range of clinical, regulatory, and logistical supports at the practice, organizational, and health system levels are needed to specifically address care providers role since introduction of MAiD. Further research may also be warranted to address how these supports impact care providers within the hospice context. Full text: view source »

MW 712: The hospice as a learning space: A death education intervention with a group of adolescents

Download the complete issue PDF 650 KB

The students appreciated the different experiential and theoretical activities in the course and the warmth, humanity and competence conveyed by the hospice professionals and guests who held the meetings. Students highlighted the particular importance of the hospice experience, which reassured them about their capacity to manage the end of life. This protected space offered them the opportunity to face death as a natural and necessary event in life that can be managed with sensitivity, generosity and serenity. Participants' responses in the qualitative part of the study revealed that they had discovered a deeper meaning in their lives and developed better coping skills to deal with loss, empowering them with more confidence to talk about the subject. In addition, some participants reported a change in their death representations from death as total annihilation to death as a passage, suggesting that they had gotten closer to a spiritual and transcendental dimension. For some, spirituality was a positive discovery, while for others, it simply confirmed their faith. From this, the authors conclude that it is important and desirable to invest in new DE programs, as they have proven to be effective in addressing and reducing the denial of death. Full text: view source »


Palliative care in general practice: A questionnaire study on the GPs role and guideline implementation in Norway

BMC FAMILY PRACTICE | Online – 7 April 2021 – Regular general practitioner (RGP) participation in the palliative care trajectory is important to achieve the goals set by the Norwegian health authorities. Still, the RGPs display low adherence to the national guideline and have not adopted the working methods recommended in PC. Reluctance towards symptom assessment forms and advance care plans despite judging them useful, may indicate something more than unawareness of guideline content. The guideline recommendations, inherently based on the specialists' view of best practice, may not correspond with the existing working methods of general practice, making them difficult to adopt in the clinical reality of the RGP. Clinical experience is important, and the mismatch between guideline and practice in this study may thus be at least partially explained by the fact that the RGPs have too few clinical cases over time to maintain skills at a complex and specialized level. The competence requirement posed on the RGPs in this specific guideline, may thus be difficult to implement in general practice. It is also a paradox that as much as half of the RGPs see themselves as central, at the same time as public evaluations see them as missing in the trajectories. Full text: view source »


Palliative care at home "compromised" during pandemic, Marie Curie survey finds

U.K. | Home Care Insight – 8 April 2021 – Three quarters of people who died at home during the pandemic struggled to get the care and support they needed at the end of their lives. The revelation has been made in a new report published by Marie Curie,1 which says quality of palliative and end-of-life care (EoLC) across the U.K. was compromised by shortages of personal protection equipment, essential medicines, and equipment, because these services were not seen as "frontline National Health Service." Unpaid carers surveyed by the charity said their loved one received no support (8%), very little support (18%), some support (28%) or most (22%) of the support they needed. The remaining 24% said they received all the support they needed and 1% answered "prefer not to say." The survey, which ran for two weeks last month, was conducted on 995 people who were involved in caring for someone who died at home from March 2020 to date. Respondents revealed their loved ones didn't get all the help they needed with pain management (64%), personal care (61%) and out-of-hours support (65%) before they passed away. The findings are released alongside Marie Curie's inaugural 'Better End of Life' report [a collaboration between Marie Curie, King's College London Cicely Saunders Institute, Hull York Medical School, University of Hull, and the University of Cambridge], which says that quality of palliative and EoLC across the U.K. was compromised due to it not being recognised as a frontline, essential service. view source »

1. 'The Better End of Life Report 2021: Dying, Death & Bereavement During COVID-19 Research Report,' Marie Curie, April 2021. Download/view at: view source »

MW 711: European Resuscitation Council Guidelines 2021: Ethics of resuscitation and end-of-life decisions

Download the complete issue PDF 600 KB

The Council's ethics writing group provides sets of simple and clear recommendations supported by a wealth of systematic reviews, recent randomised controlled trials and nonrandomised studies. Despite the generally low certainty about the precision of the effect estimates of several evaluated meta-analyses, the directions of the effects on patient outcomes clearly favour the use of interventions such as advance care planning, shared decision-making, and termination of resuscitation rules. The writing group also produced three narrative reviews to summarise the existing key evidence/knowledge/issues on education/system organisation, patient outcomes, and ethics of emergency research. Lastly, the writing group has provided a set of consensus definitions of key terms, which could potentially prove useful in both routine clinical practice and the design of future research protocols. Full text: view source »


"Don't talk to them about goals-of-care": Understanding disparities in advance care planning

JOURNAL OF GERONTOLOGY (Series A) | Online – 29 March 2021 – Structurally marginalized groups experience disproportionately low rates of advance care planning (ACP). To improve equitable patient-centered end-of-life care, the authors examine barriers and facilitators to ACP among clinicians as they are central participants in these discussions. They conducted semi-structured interviews with purposively selected clinicians from six diverse health systems between August 2018 and June 2019. Thematic analysis yielded themes characterizing clinicians' perceptions of barriers and facilitators to ACP among patients, and patient-centered ways of overcoming them. Among 74 participants, 49 (66.2%) were physicians, 16.2% were nurses, and 13.5% were social workers. Most worked in primary care (35.1%), geriatrics (21.1%), and palliative care (19.3%) settings. Clinicians most frequently expressed difficulty discussing ACP with certain racial and ethnic groups (African American, Hispanic, Asian, and Native American) (31.1%), non-native English speakers (24.3%), and those with certain religious beliefs (Catholic, Orthodox Jewish, and Muslim) (13.5%). Clinicians were more likely to attribute barriers to ACP completion to patients (62.2%), than to clinicians (35.1%) or health systems (37.8%). Three themes characterized clinicians' difficulty approaching ACP (Preconceived views of patients' preferences; narrow definitions of successful ACP; lacking institutional resources), while the final theme illustrated facilitators to ACP (Acknowledging bias and rejecting stereotypes; mission-driven focus on ACP; acceptance of all preferences). Most clinicians avoided ACP with certain racial and ethnic groups, those with limited English fluency, and persons with certain religious beliefs. The findings of this study provide evidence to support development of clinician-level and institutional-level interventions and to reduce disparities in ACP. Abstract: view source »

Research Matters

Facebook recruitment for children with advanced cancer and their parents: Lessons from a web-based pediatric palliative intervention study

PROGRESS IN PALLIATIVE CARE | Online – 29 March 2021 – Participant recruitment for pediatric palliative intervention studies is a chronic challenge for researchers. Digital recruitment strategies, or digital technology-assisted recruitment methods used to remotely reach and enroll research subjects, can help address these recruitment challenges for pediatric palliative care (PC) clinical trials. This study a) describes Facebook recruitment procedures targeting children with cancer and their parents for a pediatric palliative intervention randomized clinical trial, b) reports recruitment results, and c) discusses successful strategies to recruit pediatric populations via Facebook advertisements. Researchers used Facebook advertisements to recruit children with advanced cancer (aged 7–17 years) for a web-based legacy intervention. Between years 2015 and 2018, the research team enrolled 150 child-parent dyads to participate in the web-based legacy program. Results suggest that Facebook advertisements can be a successful tool to access and recruit pediatric populations with life-threatening conditions. Further research is needed to determine how innovative social-media recruitment strategies could be used in other populations of patients with serious illnesses and their caregivers to further advance the science in PC. Full text: view source »

MW 710: Hospital-based acute care in the last 30 days of life among patients with chronic disease that received early, late or no specialist palliative care: A retrospective cohort study of eight chronic disease groups

Download the complete issue PDF 500 KB

An ongoing challenge is knowing precisely when and who to refer to specialist PC to best leverage these providers' expertise, recognising that in many places this is a scarce resource. This is true particularly for patients without cancer chronic diseases where the disease trajectory is less predictable, and can be much longer. Addressing this challenge is important as evidence shows that the addition of PC benefits outcomes for patients with and without cancer. Future work examining differing patient needs and preferences by chronic disease is needed, and could inform referral to specialist PC services, which in turn would impact timing of PC referrals. Development of disease-specific quality of end-of-life (EoL) care indicators would help ensure that the right outcomes are focused on by all providers. Within specialist PC, questions remain on the role that location and model of delivery play in improving patient quality of life (QoL) and optimising healthcare resource use near the EoL. For example, how do the different specialist PC services (e.g., palliative home care, palliative consult team) compare in their impact on QoL and EoL resource use outcomes, and does it differ by chronic disease (underlying cause of death). At the level of individual specialist PC services, is there a difference in timing for each? For many patients, specialist PC is a complex, multifaceted intervention, and determining what aspect of the care have the greatest impact on outcomes could help in determining how to deliver the highest quality and highest value EoL care. Full text: view source »


Specialist palliative care service innovation and practice change in response to COVID-19. Results from a multinational survey…

PALLIATIVE MEDICINE | Online – 23 March 2021 – In this study, services had to rely on a "quick fix," "making do," being flexible and thinking in a frugal way. So called "frugal" or "jugaad" innovation can challenge standard definitions of innovation. The aim is to provide low cost solutions to problems in environments that have resource constraints, and has been used in healthcare in economically disadvantaged communities, including in the context of palliative care. Changes seen do not reflect the standard literature on the diffusion of innovations. Standard forms of innovation require planning and funding, often impossible when responding to an unforeseen event like the COVID-19 pandemic. The term improvisation rather than innovation has been used in crisis management, as organisations are required to be creative by using, adjusting and recombining existing resources, structures and processes to manage the impact of a crisis. In these circumstances, resistance to change is limited as there is an acceptance that "normal" rules no longer apply and a collective identity develops, as seen in this study, with clinicians no longer working in professional silos and previously resisted technology being used. Whilst used in a different context, such limited resistance to change resonates with Klein's concept of the "shock doctrine" in which extreme crises (such as COVID-19) pertain the power to "shock" systems and, in doing so, shake up socio-cultural norms to the extent that new changes – that may have been previously resisted – can be made quicker and easier than usual. Full text: view source »

Research Matters

Opportunities for public involvement in big data research in palliative and end-of-life care

PALLIATIVE MEDICINE | Online – 24 March 2021 – Public involvement – the process by which research is conducted in collaboration with patients, carers or members of the public – is increasingly considered a prerequisite for high-quality research. Evidence suggests that public involvement can benefit research by helping to identify and prioritise patient-focused research questions, aiding recruitment and retention, and helping to foster greater links between researchers and the wider community. Public involvement is encouraged across the research cycle and guidance has been developed to support researchers to involve the public at each stage. However, currently, such guidance is focused on studies which include primary data collection, and there is little guidance on how to meaningfully involve the public in big data research. Big data research takes many forms. In palliative care, this research often involves secondary analysis of routinely collected data (i.e., data initially collected for other purposes other than research, as part of a standard administrative or care process) such as death registry data and electronic health records. Differences in the reported presence of public involvement across studies have shown that involvement in big data research is significantly limited in comparison with other study designs. It has been suggested that this may be because common approaches to public involvement adopted in primary data research are not appropriate within big data analysis studies. While public members are commonly involved in primary research to review and develop patient information leaflets or other research materials, undertake interviews with research participants or even support recruitment for a clinical trial, these involvement opportunities are not applicable to big data research. In addition, the highly data driven discussions that underline this type of research can present a barrier to public involvement with "unfamiliar" and "scientific" language repeatedly being cited as an obstacle, across fields. Due to this there is now growing recognition that public involvement in big data research requires special considerations. Full text: view source »

MW 709: Public knowledge, preferences and experiences about medical substitute decision-making: A national cross-sectional survey

Download the complete issue PDF 550 KB

It is striking that only 33% of participants reported knowing that SDM laws existed in Australia. Of those who had acted in the SDM role, challenges about knowing the best decision to make and making decisions about end of life were the most frequently reported. In addition, while most ranked a health professional as their preferred source of obtaining information about how to support SDMs in their role, few participants indicated they had obtained any support in the SDM role. The Australian community's ability to appoint an SDM, and for the SDM to act appropriately, depends on awareness of the requirements of these roles. It is likely that SDMs would be more likely to advocate on behalf of the person regarding treatment preferences or use legal recourse … if they are aware of existing legislation that will support them in this process. However, this study found low awareness of ACP, limited engagement with ACP behaviours … and low to moderate SDM knowledge in the sample overall, suggesting these may be problematic. Full text: view source »


Examining public knowledge, attitudes and perceptions towards palliative care: A mixed method sequential study

BMC PALLIATIVE CARE | Online – 17 March 2021 – Whilst the findings indicate the public may claim to be aware of the term palliative care (PC), there is an inadequate understanding of the concept, with only a fifth of the sample obtaining full scores. The current study identified 14.2% of participants had no knowledge of PC. This is consistent with previous international, and national literature. For example, a study undertaken in Northern Ireland that reported 19% of the 600 members of the public who completed a cross-sectional survey had no understanding of PC and a further 56% had very low knowledge. This also correlates with an American study … [that] … found limited understanding of PC…, with a significant proportion of the 301 participants responding "I don't know" for every item. The timing of these studies would also suggest that understanding is not improving, despite policy initiatives, media and wider public engagement strategies. Personal experience shaped many participants' views on PC and potentially their misconceptions, which is also a common thread in the literature. For example, over half of the participants … [in one] … study held a misperception about PC and were not aware of the major components. The most common misconception about PC in this study was that it is exclusively for people in the last 6 months of life. This is supported by previous literature internationally, which repeatedly reports a public perception of PC provided at the very end of life. Internationally, it is also reflected in health systems insurance policy, where PC is provided 6 months prior. Other common misconceptions included a tendency to associate PC for those diagnosed with cancer, a focus on pain relief whilst other aspects such as spiritual care were not mentioned. Full text: view source »


A critical realist evaluation of advance care planning in care homes

JOURNAL OF ADVANCE NURSING | Online – 15 March 2021 – The findings of this qualitative study showed that although the importance of advance care planning (ACP) was well recognized, the emotional labour of frequently engaging in discussions about death and dying was a problem for some care home staff. In some cases, care home staff's unmet emotional needs led them to rushing and avoiding discussions about death and dying with residents and relatives. Despite these difficulties, the authors' findings indicated a sparsity of mechanisms to support care home staff's emotional needs. A lack of training and knowledge, particularly amongst non-registered care home staff and those with non-formal caring roles, appeared to inhibit their ability to engage in meaningful care planning conversations with those living with dementia due to preconceived assumptions and communication barriers. Whilst the numbers of advance care plans in place are important, findings presented in this study suggest that more needs to be done to support staff to sensitively engage in discussions about death and dying to improve the quality of ACP discussions. Full text: view source (400 KB) »

MW 708: A systematic review of classifications systems to determine complexity of patient care needs in palliative care

Download the complete issue PDF 400 KB

This systematic review describes six systems that classify patients in accordance with their care needs. Applying these systems, or the aspects of care they identify, to clinical care, may assist in anticipatory planning for healthcare professionals. In particular, as specialist PC services such as high care hospices are faced with resource challenges, it may identify those patients for whom general palliative services are appropriate. Full text: view source »


Ten things to consider when implementing rationing guidelines during a pandemic

INTENSIVE CARE MEDICINE | Online – 7 March 2021 – The COVID-19 pandemic has reaffirmed the need for establishing an ethical basis for rationing decisions during pandemics. In some jurisdictions, medical resources, intensive care unit beds, or healthcare workers became scarce and rationing of life-sustaining treatment was needed. Principles and processes for triage have been proposed and guidelines developed. Concurrently, critiques arose pertaining to legal issues, equity concerns, and the practicality of these recommendations, given many unprecedented features of this pandemic. The goal of this commentary is to provide additional guidance to support and enhance the development and implementation of such guidelines through the identification of ten elements critical for consideration in rationing decisions during crises. These ten elements incorporate principles important to clinicians, administrators and society at large. Full text: view source »


Incompatible: End-of-life care and health economics

BMJ SUPPORTIVE & PALLIATIVE CARE | Online – 8 March 2021 – Worldwide, the financial cost to an individual with severe illness is significant. In the U.S., the risk of bankruptcy increases by 250% with a cancer diagnosis. Even in the U.K. where healthcare is free at delivery, those with a cancer diagnosis were found, on a monthly average, to be £570 poorer. In the U.K., most people die in hospital, despite it being the least preferred location. Many may have unnecessary clinical interventions unlikely to impact quality and/or length of life. Hospital care is expensive but comprehensive palliative care (PC) at home may also be costly. Tailored end-of-life (EoL) care integrated into public healthcare reduces emergency hospital and intensive care unit admissions and length of hospital stay. A more personalised approach therefore has great potential to avoid unnecessary resource use while simultaneously benefitting the patient. In the U.K., all these issues are being tackled by a new national strategy to redesign PC services. But is it a need to prioritise, for example, between expensive new drugs with limited life prolongation and little evidence of improved symptom management or a basic human right to good EoL care? In line with national ambitions for personalised care, advanced care planning is at the heart of this strategy, where patients should have realistic high-quality choices at the EoL. The effectiveness of sustainable integrated PC programmes – including the funding of EoL services – is well documented and it may be best to prioritise such interventions in a public health system. The goal therefore should be to reduce the financial burden of care of the dying on the healthcare system without compromising the level of care or a person's quality of life. If the PC clinical community accepts available resources are constrained, then extensive work is necessary to better understand the value at the EoL. Full text: view source »

MW 707: A national collaborative to spread and scale paramedics providing palliative care in Canada: Breaking down silos is essential to success

Download the complete issue PDF 625 KB

A model of care including a palliative care (PC) clinical practice guideline or protocol, specific training, and a mechanism for sharing of goals of care, has been proven to improve the palliative and end-of-life experience for patients with PC needs and their families. It increases the comfort and confidence of paramedics and has benefits to the broader health system. Meaningful and very broad stakeholder engagement and intersectoral collaboration is absolutely essential to the success of this innovative approach to care. Abstract: view source »


Effectiveness of a family-caregiver training program in home-based pediatric palliative care

CHILDREN | Online – 26 February 2021 – Caretakers of children with life limiting conditions show high skills and knowledge in the tasks that are needed to develop their role. An educational program may strengthen these capabilities and improve levels of confidence. This study shows that the provided intervention had a particularly positive effect in caretakers' self-perception and confidence about the outstanding caring skills they already had. Although the number of out-of-hours telephone calls from the caregivers to the pediatric palliative care (PC) team after the intervention did not decrease, they were more focused on the description of symptoms. A high level of commitment of the caregivers was found. Psycho-educational space emerged in the authors' school for parents of children with complex healthcare needs in the setting of home-based PC that allowed them to share their experience of daily care for their children. In addition, they have seen that they are not alone and that they can help each other. Full text: view source »

U.K. & Ireland

"A silent epidemic of grief": A survey of bereavement care provision in the U.K. and Ireland during the COVID-19 pandemic

BMJ OPEN | Online – 3 March 2021 – Bereavement care is a central aspect of the work of a wide range of health and social care professionals yet remains a low priority within healthcare policy. The COVID-19 pandemic has highlighted this important area of patient care, creating both major challenges to bereavement support provision and opportunities for practitioners and policymakers to address this neglected aspect of clinical care. Bereavement is one of the long-term impacts of COVID-19: if left unaddressed it may lead to significant physical and mental health morbidity and create a further burden on health and social care services. This study highlights the profound impact of the pandemic on bereaved people, yet much remains unknown about how individuals, communities, and the health and social care system will respond. While further research is urgently needed in this area, we already know that action is needed now to ensure equity of provision across ethnic groups, ages and marginalised groups, and equity of care for all bereaved people whether from COVID-19, from other conditions or those bereaved prior to the pandemic. Full text: view source »

MW 706: Citizens appreciate talking about death and learning end-of-life care: A mixed-methods study on views and experiences of 5,469 Last Aid Course participants

Download the complete issue PDF 350 KB

Almost all participants would recommend the course to others. Findings from the qualitative data revealed participants find the atmosphere comfortable; instructors competent; appreciate the course format, duration, topics and discussions about life and death. The combined results from quantitative and qualitative data show public PC education can be delivered using the Last Aid Course format in a very short time frame within four teaching hours on a single day. Full text (click on pdf icon): view source »

The Netherlands

Physicians' views on the usefulness and feasibility of identifying and disclosing patients' last phase of life: A focus group study

BMJ SUPPORTIVE & PALLIATIVE CARE | Online – 22 February 2021 – The authors found that physicians consider it important and useful to prognosticate a patient's last phase of life. In doing so, physicians are enabled to timely assess patients' preferences for medical treatment and care in the last phase of life. The simply formulated surprise question (SQ ) is considered a useful prognostic tool to facilitate prognostication. However, the assumed subjective character of the SQ may hamper its use. Clinical experience with patient and disease-related clinical factors are also facilitators of prognostication. Some studies have indeed found that clinical experience is associated with more accurate predictions of the last phase of life, but other studies found no such associations. The authors found that physicians supported the disclosure of the last phase of life (i.e., expected death within one year) as recommended in quality standards for palliative care, but they also stressed the importance of a gradual disclosure. Furthermore, the primary responsible physician, typically the treating medical specialist, should initiate communication about the last phase of life with patients. However, apart from linking those discussions to moments of significant deterioration in patients' health, little is known about the best way in which the last phase of life and patient's wishes and preferences may be discussed. Full text: view source »


Conversing with high-risk patients to determine serious illness goals and values in the time of COVID-19

NEJM CATALYST, 2021;2(3). During the COVID-19 pandemic's first surge in Boston, Brigham Health sought to ensure that patients' healthcare proxies and serious illness wishes were known to care teams. The authors engaged a diverse set of team members in outreach regarding serious illness conversations. Patients enrolled in the Integrated Care Management Program (iCMP) were contacted by their own nurse care coordinator for a serious illness conversation, discussing patients' goals and values in the context of underlying illness and the threat of COVID-19. Simultaneously, nurses, medical students, and social care team members reached out to non-iCMP primary care patients identified as being at high risk of morbidity or mortality from COVID-19 and engaged these patients in conversations regarding healthcare proxy documentation and social determinants of health needs. The authors' experience demonstrates that such a population health approach can facilitate timely and well-accepted outreach regarding serious illness to patients with varied needs and profiles. Full text: view source »

MW 705: Harnessing social support for bereavement now and beyond the COVID-19 pandemic

Download the complete issue PDF 625 KB

However, health services are not necessarily well-equipped to identify bereaved individuals or provide appropriate bereavement care to the rising number of persons in need. The COVID-19 crisis provides the opportunity to focus on developing social support, now and in the future, so that our communities are equipped to provide responsive, timely, and sustainable social support. Understanding the giving, seeking, and accepting of social support is critical to investigate how social support can be bolstered to benefit grievers, their supporters, and communities. The time is right for considerable investment in research to understand how social support can be optimised as part of the rapidly developing public health palliative care movement that aims to reclaim dying and death in the everyday lives of individuals and communities. Full text: view source »

U.K. (England)

Constructing a new role for family carers and volunteers providing care towards the end of life: An action research approach exploring a new model of hospice care

HEALTH & SOCIAL CARE IN THE COMMUNITY | Online – 13 February 2021 – Estimates suggest a rapidly increasing need for palliative and end‐of‐life care (EoLC) as the population ages and lives longer but perhaps burdened with increasing frailty and chronic ill health. At the same time, moves away from expensive professionalised palliative and EoLC services, allied with a need to relocate death and dying in supportive communities where possible, drove the development of "Cottage Hospice" as an innovative model of care. This study demonstrated that embarking on such a change in service delivery, relying as is planned on family caregivers and volunteers, is frequently viewed as a threat and resistance to change, particularly among those staffing the established hospice service – but also with caution on the part of local resident stakeholders and some in the local health economy. Service users and volunteers proved more enthusiastic seeing the advantages of a service that provides for a wider group of people in a setting over which they could exercise more control, but with the support of professionals where needed. It remains to be seen how the service will operate in reality and what unforeseen challenges may lie ahead, but "Cottage Hospice" represents a truly new way of attempting to meet the needs of dying people and their families and has the capacity to act as a template for progressive service developments elsewhere in the palliative and EoLC field. Full text: view source »

Ending inequalities: Supporting people with no recourse to public funds at the end of life

U.K. | Hospice UK – 18 February 2021 – St. Christopher's Hospice has launched a toolkit to support people at the end of life (EoL) who have no recourse to public funds (NRPF). The guide has been published to better prepare migrant centre workers, social workers and welfare teams to support people with EoL or palliative care needs with NRPF status, which means they may not be able to access National Health Service hospital treatment and welfare, such as Universal Credit and Disability Living Allowance. People can find themselves with no recourse to public finds when their immigration status is unsettled, such as when their visa expires, or when their claim for asylum is rejected. The new toolkit was put together after 18 months of research, including listening to the experiences of people living with NRPF, and collaborating with partners and specialists working in migrant centres. The toolkit emphasises the importance of partnership working between people with expertise in EoL care and those who feel confident working with people with no recourse to public funds. Neither can help this group of people adequately on their own – each need the other to attend to the double disadvantage facing carers and those they care for. For this reason, the resources are written in a way that brings their two worlds together, with the person who is dying, their families and carers at the centre. view source »

MW 704: Palliative care in Toronto during the COVID-19 pandemic

Download the complete issue PDF 475 KB

Toronto, the largest city in Canada, experienced its first known case of COVID-19 in January 2020; with the first peak in cases occurring in April and its second wave beginning this September. Despite warnings of increased clinical loads, as well as widespread shortages of staff, personal protection equipment, medications, and inpatient beds, the calls to action by international colleagues to support the PC needs of patients with COVID-19 were not realized in Toronto. This article explores the effects of the pandemic on Toronto's PC planning and reports of clinical load and capacity, beds, staffing and redeployment, and medication and personal protective equipment shortages. The Toronto PC experience illustrates the international need for strategies to ensure the integration of PC into COVID-19 management, and to optimize the use of PC systems during the pandemic. Full text: view source »


Responding to the new International Classification of Diseases-11 prolonged grief disorder during the COVID-19 pandemic: A new bereavement network and three-tiered model of care

PUBLIC HEALTH, 2021;191(2):85-90. The field of bereavement research and care is at a tipping point. The introduction of prolonged grief disorder (PGD) in the International Classification of Diseases (ICD-11) has ignited clinical interest in this new disorder, along with debate over challenges in validating and implementing these new criteria. At the same time, the global COVID-19 pandemic has launched several local and international efforts to provide urgent support and comfort for individuals and communities suffering from grief. Recently, grief experts have called for a collective response to these complicated bereavements and possible increase in PGD due to COVID-19. The authors of this article outline a new European network that aims to unite a community of grief researchers and clinicians to provide accessible, evidence-based support particularly during times of unprecedented crisis. The Bereavement Network Europe (BNE) has been developed with two main aims. Firstly, to develop expert agreed, internationally acceptable guidelines for bereavement care through a three-tiered approach. Secondly, to provide a platform for researchers and clinicians to share knowledge, collaborate, and develop consensus protocols to facilitate the introduction of PGD to diverse stakeholders. This article outlines the current status and aims of the BNE along with the plans for upcoming network initiatives and the three-tiered bereavement care guidelines in response to the COVID-19 pandemic. Full text: view source »


A vital layer of support: One safety net hospital's palliative care response to the pandemic

JOURNAL OF PALLIATIVE MEDICINE | Online – 8 February 021 – During the COVID-19 pandemic, New York City's public hospitals experienced a significant increase in the number of critically ill patients, especially from minority populations. The palliative care (PC) consult service at Bellevue Hospital, therefore, adjusted rapidly to meet the increased needs of our patients and colleagues. The consult service expanded into three individual teams to accommodate daily rounds with the medical intensive care and general medicine teams. Non-PC trained community volunteers and internally redeployed providers received targeted training in advanced care planning (ACP) and were subsequently embedded within the three teams, each led by a PC provider. A total of 12 volunteers joined the PC team. During eight weeks of the surge, the service cared for a total of 276 patients, 111 of whom were seen by volunteers. Over 50% of the PC patients had limited English proficiency. The inpatient PC consult service structure adapted rapidly in response to the increased need for ACP and support throughout the hospital during the COVID-19 surge. Focusing on three key areas of surge staffing, support, and scale resulted in expert coordination with the hospital and system level leadership, efficient training of volunteer providers, and frequent re-evaluation of response strategies. These elements were vital in allowing the PC team to harness the expertise of various volunteer providers to meet the increased demands of a safety net hospital during the COVID-19 pandemic. Abstract: view source »

MW 703: "Flattening" one curve: What about "raising the line" on the other? COVID-19 and palliative care in low-income and middle-income countries

Download the complete issue PDF 460 KB

Importantly, the immediacy of the dialogue around COVID-19 response preparedness has largely muted calls around the need to enhance PC service provision in low-income and middle-income countries, and the longer term development necessary to inform future disease outbreaks specifically and the needs of the dying generally. PC was initially deprioritised in the contagion compared with efforts aimed at curbing the infection, medical management and vaccine development. However, escalating admissions to high-income countries intensive care units increased awareness of the prevalence of patient symptoms that can be highly distressing, including breathlessness, pain and delirium. They also highlighted the often poor quality of dying and death of those affected by COVID-19, and the grieving needs of bereaved families and friends, colleagues and communities, challenging the feasibility of individualistic Western conceptions of a "good death." Full text: view source »

U.K. (Scotland)

How many people will need palliative care in Scotland by 2040? A mixed-method study of projected palliative care need and recommendations for service delivery

BMJ OPEN | Online – 3 February 2021 – The authors project that by 2040, the number of people requiring palliative care (PC) will increase by at least 14%; and, by 20% if they factor in multimorbidity. The number of people dying from multiple diseases associated with different disease groups is projected to increase from 27% of all deaths in 2017 to 43% by 2040. To address increased need and complexity, experts prioritised sustained investment in a national digital platform, roll-out of integrated electronic health and social care records; and, approaches that remain person-centred. By 2040 more people in Scotland are projected to die with PC needs, and the complexity of need will increase markedly. Service delivery models must adapt to serve growing demand and complexity associated with dying from multiple diseases from different disease groups. Sustained investment is needed in secure, accessible, integrated and person-centred health and social care digital systems, to improve care coordination and optimise PC for people across care settings. Full text: view source »


Palliative care competencies for geriatricians across Europe: A Delphi consensus study

EUROPEAN GERIATRIC MEDICINE | Online – 1 February 2021 – The World Health Organization definition of palliative care (PC) includes the provision of quality of life for patients and their families through the prevention/relief of suffering by means of early identification, comprehensive assessment and treatment of pain and other physical, psychosocial and spiritual suffering. Achieving these goals requires an integrative approach throughout societal structures, including appropriate policies, adequate access to treatment and interventions such as drug availability, education of both healthcare workers and public and implementation of generalist PC services at all levels of society. While not denying the reality of death, PC thus offers a positive approach for living life to the full even for older patients. Early identification of patients in need of PC becomes crucial in particular for older patients with chronic conditions. The Delphi process described in this article enabled the development of a European specific core competency catalogue to improve competencies of geriatricians to enable them to guide their patients through the last period of life. The current version of the PC competency catalogue represents an important step in the development of effective PC education within the training of geriatricians, which is essential given the condition's increasing relevance to twenty-first century healthcare. This catalogue equips geriatricians with skills mandatory to deliver person centered care to older patients until the end of their life. Full text: view source »

MW 702: Palliative care professionals' inner lives: Cross-cultural application of the awareness model of self-care

Download the complete issue PDF 550 KB

The COVID-19 pandemic highlights the universality of these problems and the need to equip ourselves with rigorously validated measurement and monitoring approaches that allow for unbiased comparisons. The main objective of this study was to offer evidence on the generalizability of the awareness model of self-care across three care systems under particular idiosyncrasy. 817 palliative care professionals from Spain, Argentina, and Brazil participated in this cross-sectional study using a multigroup structural equation modeling strategy. The measures showed good reliability in the three countries. When testing the multigroup model against the configural and constrained models, the assumptions were fulfilled, and only two relationships of the model revealed differences among contexts. The hypotheses posited by the awareness model of self-care were supported and a similar predictive power on the professional QoL dimensions was found. Self-care, awareness, and coping with death were competences that remained outstanding no matter the country, resulting in optimism about the possibility of acting with more integrative approaches and campaigns by international policy-makers with the consensus of world healthcare organizations. Full text (click on pdf icon): view source »

U.K. (England & Wales)

Palliative care: Experts call for major reforms as pandemic accelerates demand by 20 years

BRITISH MEDICAL JOURNAL | Online – 26 January 2021 – Experts at a leading charity have made an urgent call for reforms to the U.K.'s palliative care system, as demand during the COVID-19 pandemic reached levels that had not been expected until 2040. More than half a million people in England and Wales were predicted to need palliative or end-of-life (EoL) care by 2040, but this level of demand will have been achieved in 2020, said researchers from Cicely Saunders International. They said that too many people who had life-limiting illnesses or were approaching death were spending unnecessarily long periods in hospital without being offered alternatives, when most would prefer to die at home. Around 80% of people would prefer to die at home or in their place of residence, but in some parts of England and Wales less than 50% do so. To help meet people's needs the authors called for face-to-face care, including symptom management, seven days a week in hospitals, as well as 24/7 support and advice in the community. Prompt access to therapeutic, nursing, and pharmacy services to support people in their homes is also needed, they said. Choice at the EoL is being compromised by poor coordination between health and social care and a shortage of expertise, the report said. It advised that everyone in this situation should have a named senior clinician and care coordinator. The researchers also highlighted an independent, government commissioned review of choice in EoL care, which estimated that £150 million (€170 million; $206 million) was needed to provide a "national choice offer" to patients and carers for EoL care. This would help to pay for timely intervention and a defined contact with a trained professional to support delivery of self-care. Other recommendations in the report's seven point action plan include increased investment in social and community care services, a strategic approach to training, and a system of continuous learning and improvement. The authors called for an increase to the 0.2% of the medical research budget that is currently dedicated to developing better ways for caring for terminally ill patients. Full text: view source »


PSST! I need help! Development of a peer support program for clinicians having serious illness conversations during COVID-19

JOURNAL OF GENERAL INTERNAL MEDICINE | Online – 24 January 2021 – Clarifying patients' values and priorities is always important but especially so during a pandemic when many people will rapidly become seriously ill. The authors describe the design and implementation of a novel service, the PSST[Peer SIC Support Team], which utilized non-palliative care, volunteer peer supporters who offered rapid, confidential assistance to clinicians working to clarify the values and priorities of their patients across settings from ambulatory care to the ICUs. This service required moderate, upfront, administrative time but was otherwise a low-cost program. It gave an opportunity for clinicians with advanced communication skills to build a community through which they could offer important support to frontline clinicians which the peer supporters found rewarding. PSST took place in a hospital with an established program in serious illness conversation training and leveraged its staff with skills in this space, which may limit its replicability in other settings. However, serious illness conversation training materials are open access and many hospitals have access to social workers and others with interests and skills in communication who could participate in such a service. Thus, this service could be replicated in other institutions for this or future crises. Full text: view source »

MW 701: Validation of the responding to urgency of need in palliative care (RUN-PC) triage tool

Download the complete issue PDF 500 KB

An online survey of PC intake officers applying the RUN-PC Triage Tool to a series of 49 real clinical vignettes was assessed against a reference standard: a postal survey of expert PC clinicians ranking the same vignettes in order of urgency. The RUN-PC Triage Tool has good intra- and inter-rater reliability in inpatient, hospital consultation and community PC settings, and moderate to good correlation to expert opinion used as a reference standard. Abstract (w. list of references): view source »


Maintaining control: A qualitative study of being a patient in need of specialized palliative care during the COVID-19 pandemic

PROGRESS IN PALLIATIVE CARE | Online – 18 January 2021 – Being a patient in need of specialized palliative care (PC) during the COVID-19 pandemic is challenging. Governments around the world have reduced the available healthcare services as well as restricted in-person meetings between patients, healthcare professionals (HCPs), and relatives. The aim of this study was to explore the experiences of patients with specialized PC needs during the period of restrictions requiring social distancing due to the COVID-19 pandemic. The analysis of this qualitative study was guided by a grounded theory approach. The participants were patients living in their own homes who were being treated by the outpatient clinic PC unit at the Herlev & Gentofte University Hospital in Denmark. Participants' main concern was maintaining control during the pandemic. They achieved this by aiming to secure a meaningful life by remaining occupied during the day, balancing social contact, contemplating the reopening of society, and seeking help from HCPs. Participants were concerned about losing control and this concern increased with the reopening of society. HCPs must ensure that they provide support and care for patients with specialized PC needs when societal restrictions change. Full text: view source »

U.K. (England)

A national survey of ambulance paramedics on the identification of patients with end-of-life care needs

BRITISH PARAMEDIC JOURNAL, 2020;5(3):8-14. Developing the proactive identification of patients with end of life care (EoLC) needs within ambulance paramedic clinical practice may improve access to care for patients not benefitting from EoLC services at present. To inform development of this role, this study aimed to assess whether ambulance paramedics currently identify EoLC patients, are aware of identification guidance and believe this role is appropriate for their practice. Between 4 November 2019 and 5 January 2020, registered paramedics from nine English NHS ambulance service trusts were invited to complete an online questionnaire. The questionnaire initially explored current practice and awareness, employing multiple-choice questions. The Gold Standards Framework Proactive Identification Guidance (GSF PIG) was then presented as an example of EoLC assessment guidance, and further questions, permitting free text responses, explored attitudes towards performing this role. Most participants (79.9%) perceived that they attended a patient who was unrecognised as within the last year of life on at least a monthly basis. Despite 72.0% of paramedics indicating that they had previously made an EoLC referral to a General Practitioner, only 30.5% were familiar with the GSF PIG and of those only 25.9% had received training in its use. Participants overwhelmingly believed that they could and should perform this role, yet current barriers were identified as the inaccessibility of a patient's medical records, inadequate EoLC education and communication difficulties. Consequently, facilitators to performing this role were identified as the provision of training in EoLC assessment guidance and establishing accessible, responsive EoLC referral pathways. Full text (click on pdf icon): view source »

MW 700: Timely identification of patients in need of palliative care using the Double Surprise Question: A prospective study on outpatients with cancer

Download the complete issue PDF 550 KB

The Double Surprise Question performs better than the original Surprise Question alone when identifying patients with cancer at risk of dying during the next year. Adding the second Surprise Question makes it possible to divide the patients for whom the original Surprise Question is answered with "no" into two groups: a small group to focus proactive PC on, and a larger group to monitor less intensively. Thus, the Double Surprise Question can help professionals to carefully balance between the timely identification of more patients with cancer who have unmet PC needs, without over-burdening limited professional resources. However, more scientific evidence is needed to support this hypothesis. Further research should examine whether the application of the Double Surprise Question contributes to more timely PC. Additionally, future studies should validate the Double Surprise Question in different settings and different patient groups. Moreover, to minimize the risk of missing patients in need of PC, studies need to reveal how often the Double Surprise Question should be used as an identification tool. Finally, the authors recommend studying whether the Double Surprise Question is a cost-effective way to identify patients in need of PC. Full text: view source »

U.K. (Northern Ireland)

Challenges for palliative care day services: A focus group study

BMC PALLIATIVE CARE | Online – 12 January 2021 – Palliative care (PC) day services reflect the holistic nature of PC, in aiming to improve the quality of life of patients and their family caregivers complementing mainstream PC...1 The challenge is to recognise needs that may be addressed via day-services and then to refer patients immediately and integrate day-services into care plans early, even alongside other models of curative intent or life-prolonging treatment. The lack of standardisation of day services has resulted in variations in function, delivery, model of care and staffing, confirming previous research. Research indicates a lack of consensus on the model and variable outcome measures makes replication or application to specific patient groups challenging. Participants noted that the origins of day-service stemmed from a social model of care that has evolved to combine both social and medical services. The hybrid model was viewed as advantageous as it enabled patients' physical, and psychosocial needs to be met in line with the holistic nature of PC, so having the potential to reduce demand on other healthcare services. The lack of evidence about the impact of day services on patient outcomes makes it difficult to quantify such beneficial effects and indeed to understand the specific nature of the contribution of PC day services. There is a need for the model of day-service and the implications of this upon other services, to be investigated. Full text: view source »

1. 'The strengths and challenges of palliative day-care centers: Qualitative study with the professionals involved,' Journal of Palliative Care, published online 3 October 2017. [Noted in Media Watch 9 October 2017 (#533, p.13)] Abstract (w. list of references): view source »

U.K. (Scotland)

What makes palliative care needs "complex"? A multisite sequential explanatory mixed methods study of patients referred for specialist palliative care

BMC PALLIATIVE CARE | Online – 15 January 2021 – Uncertainty around what complex needs are and ambivalence regarding the hospice services available are features of the current system. Despite this, the authors found that "complex needs," specifically multiple needs within and across domains, are recorded in hospice referrals, though detail is often lacking. Several steps could be taken to improve the consistency of referrals. Referrers may have a history with patients, and could draw more on this knowledge when documenting the reasons for referral to ensure that the patient and their family is directed to the service that best meets their needs. Greater consideration of the non-physical needs of patients is warranted. Across all domains, where appropriate, the use of standardised screening tools and performance measures … as a supplement to free-text information, could provide greater clarity and enable hospices to individualize services early on. Hospices could improve the referral process by ensuring that referrers are aware of the needs addressed by each available service. Palliative care (PC) specialists could offer training and support to GPs, community nurses, care-home nurses and other staff to reach all patients in need, especially those with non-malignant disease. Structured referral forms – now normal practice in all other specialties – could contain a section on PC provided prior to referral, clarifying what PC has already been offered, when and why the person is now being referred for hospice care. Hospices are increasingly under pressure to show their "worth" to commissioning groups through tangible outputs and impacts, which may contribute to a greater emphasis on more medical aspects of PC, which downplays the psychological, social and spiritual care provided. This may partly explain the emphasis on physical symptoms found in referral documentation. Clear communication on the interventions offered by hospices to address non-physical care needs is needed to ensure that referrers and commissioners understand the range of specialist PC services available, and how these can significantly improve quality of life for those with greatest need. Full text: view source »

MW 699: Words describing feelings about death: A comparison of sentiment for self and others and changes over time

Download the complete issue PDF 500 KB

A linguistic lexicon of sentiment norms was applied to activities conducted in an online course for the general-public designed to generate discussion about death. The authors analysed the sentiment of words people chose to describe feelings about death, for themselves, for perceptions of the feelings of "others," and for longitudinal changes over the time-period of exposure to a course about death. The results demonstrated that sadness pervades affective responses to death, and that inevitability, peace, and fear were also frequent reactions. However, words chosen to represent perceptions of others' feelings towards death suggested that participants perceived others as feeling more negative about death than they do themselves. Analysis of valence, arousal and dominance dimensions of sentiment pre-to-post course participation demonstrated that participants chose significantly happier (more positive) valence words, less arousing (calmer) words, and more dominant (in-control) words to express their feelings about death by the course end. This suggests that the course may have been helpful in participants becoming more emotionally accepting in their feelings and attitude towards death. Full text: view source »

The Netherlands

The role of research in improving responsiveness of palliative care to migrants and other underserved populations in The Netherlands: A qualitative interview study

BMC PALLIATIVE CARE | Online – 6 January 2021 – Researchers play a key role in ensuring research demonstrates responsiveness to patients with a migration background and other underserved populations in order to obtain representative research findings and allow the development of an evidence base that can be used by service providers and policymakers to reduce disparities in palliative care (PC). Their efforts are affected by the interaction with research institutions, healthcare institutions and healthcare professionals. The authors' research suggests there are several ways to increase opportunities to improve responsiveness of PC through research. To address individual level factors they recommend training in responsiveness for researchers in the field of PC; to increase knowledge of patients with a migration background and other underserved populations in PC and familiarity with responsiveness measures. To address factors on the institutional level the authors also recommend training for healthcare professionals involved in PC research projects; to learn to address the topic of PC and increase enrolment of patients with a migration background and other underrepresented populations. Lastly, the authors encourage researchers as well as research institutions and funding agencies to allow flexibility in research practices and set a standard for responsive research practice. Providing the opportunity for practical support helps researchers to get responsiveness of PC on the agenda and take action to address it. When such opportunities to improve responsiveness of research are utilized, research can help identify and understand determinants of disparities, identify and evaluate interventions to eliminate them and contribute to quality improvement and innovation of equitable PC, in which patients and families receive care according to their needs. Full text: view source »


Ethical implications of COVID-19: Palliative care, public health, and long-term care facilities

JOURNAL OF HOSPICE & PALLIATIVE NURSING | Online – 6 January 2021 – Outbreaks of COVID-19 among nursing homes, assisted living facilities, and other long-term care facilities in the U.S. have had devastating effects on residents. Restrictions such as banning visitors, sequestering residents, and testing healthcare staff have been implemented to mitigate the spread of the virus. However, consequences include a decline in mental and physical health, decompensation, and a sense of hopelessness among residents. The authors present and explore a case study at an assisted living facility addressing the ethical issues in balancing the management of the community versus the resident's right to autonomy and self-determination. A team of palliative care (PC) experts was brought into assisted living facilities to manage patients, care for well residents, and provide input in advance care planning and symptom management. The principles of self-determination and autonomy, stewardship, and distributive justice were explored. The use of nursing skills in triage and assessment, principles in public health, and the 8 domains of PC provided a comprehensive framework for structuring emergency operations. Palliative interventions and the role of PC nurses played an integral part in addressing ethical challenges in the containment of the virus and the deleterious effects of social isolation among the elderly. Abstract: view source »

Help us to expand the resources on this site quickly.
Please send your suggestions to
Technical Issues? Contact

Page Last Modified: Sat Jul 2 2022