Global Palliative Care News Archive

MEDIA WATCH, CREATED AND DISTRIBUTED BY BARRY R. ASHPOLE

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Barry R. Ashpole, Ontario, CANADA
BarryRAshpole@bell.net

MW 713:

Australia

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

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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 »

Canada

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:

Italy

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

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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 »

Norway

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 »

U.K.

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:

Europe

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

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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 »

U.S.

"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:

Canada

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

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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 »

U.K.

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:

Australia

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

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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 »

Ireland

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 »

U.K.

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:

Australia

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

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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 »

Germany

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 »

U.K.

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:

Canada

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

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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 »

Spain

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:

Denmark

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

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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 »

U.S.

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:

Australia

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

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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:

Canada

Palliative care in Toronto during the COVID-19 pandemic

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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 »

Europe

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 »

U.S.

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:

Palliative care in low-income and middle-income countries

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

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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 »

Europe

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:

Spain

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

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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 »

U.S.

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:

Australia

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

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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 »

Denmark

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:

The Netherlands

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

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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:

Australia

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

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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 »

U.S.

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 »

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