Global Palliative Care News Archive


Please feel free to share this weekly report with your colleagues.
Barry R. Ashpole, Ontario, CANADA

MW 631: "My family wants something different"
Discordance in perceived personal and family treatment preference and its association with do-not-resuscitate order placement

Download the complete issue (PDF 541 KB)

In structured interviews, patients reported their preference for treatment maximizing either life extension or comfort; patients also indicated their perception of their families' preference. DNR placement was reported by patients and verified using medical records. Approximately 23% of patients perceived discordance between their preference and their families' preference. Patients who perceived discordance were less likely to have completed a DNR compared with those who perceived concordance, even after controlling for relevant confounds… DNR placement rate was lowest among discordant subgroups, where there was either a personal or family preference for comfort care, followed by patients who perceived concordance for wanting life-extending care and by patients who perceived concordance in wanting comfort-focused care. Abstract: view source »

Unrelieved pain in palliative care in England

OFFICE OF HEALTH ECONOMICS | Online – Accessed 6 September 2019 – In England, an estimated 378,427 people receive palliative care (PC) each year in a range of specialised and generalised services. Overall, the quality of PC in England and the wider U.K. is widely regarded as excellent. However, despite the generally high level of care, many patients receiving PC die in pain every year. Yet, to date, there is little evidence of the scale of this problem. This study estimates that currently there are approximately 125,971 end-of-life patients receiving, or in need of, PC suffering from unrelieved pain. Of these, an estimated 16,130 patients experience no relief from their pain at all in the last three months of life. Some of these patients suffer unnecessarily because of variations in the quality of care across care settings (e.g., hospice versus at home services). However, even if unrelieved pain rates were the same as they are in hospices, where they are at their lowest since PC is excellent in hospices, there would still be 50,709 PC patients dying in some level of pain each year. Of these patients, 5,298 would still experience no pain relief at all in the last three months of life. Estimates include patients of all ages, including children (under 19) which only account for 0.83% of the registered deaths in England and Wales. This was dictated by the availability of evidence of the number of deaths by place of death, which does not differentiate by age. If we were to include only adults, the number of patients who experience no relief from their pain at all in the last three months of life would go from 16,130 to 15,996. Overall, this study has adopted conservative assumptions that will provide the lowest possible estimate of the number of patients dying with unrelieved pain. Download/view at: view source »

MW 630: General practitioners' engagement in end-of-life care: A semi-structured interview study

Download the complete issue (PDF 550 KB)

Even when death was not articulated, GPs were aware of approaching EoL and changed their focus to comfort of the patient. GPs generally had an informal care plan in mind, but this developed gradually and without discussing these plans with the patient. How GPs provided EoL care depended primarily on patient traits (e.g., willingness to discuss physical decline) and the GP's characteristics (e.g., experience, training and consulting style). GPs were aware of their patients' approaching EoL and care was adjusted accordingly. However, under certain circumstances this was not explicitly articulated and discussed. It is not clear if implicit but unarticulated EoL care is sufficient to meet patients' needs. Future studies should investigate this. Abstract: view source »

Moral ambiguity in media reports of dying alone

MORTALITY | Online – 3 September 2019 – More older people are living alone in the U.K., thereby increasing the prospect of dying alone at home. Lone deaths tend to be regarded as bad deaths, in that they contravene notions of accompaniment and open awareness espoused in U.K. end-of-life care policies. The authors describe a media analysis of dying alone conducted in two phases. First, they revisited a previous media analysis to examine whether news reporting of dying alone has changed. Second, they focussed on a single case study to explore how an account of a lone death unfolded during the days following its discovery. The authors found that dying alone remains a threat to individual and collective moral reputations. However, they also identified reports in which dying alone was presented as acceptable in some circumstances, and as congruent with aspects of a good death. The authors suggest that dying alone can be made good through media reporting, reflecting the individual choice and autonomy associated with a good death. There is potential for news media to revise cultural scripts of dying, largely based on the experiences of people dying under medical supervision. Abstract: view source »

Medicinal cannabis and cannabis-based medication: An appeal to physicians, journalists, health insurances, and politicians for their responsible handling

DER SCHMERZ | Online – 2 September 2019 – Since the adoption of the law of March 2017, any German physician can prescribe medical cannabis flowers and cannabis-based magistral and finished medicinal products. No specific indications for prescriptions are provided in the law. The statutory health insurance companies bear the costs once an application for cost coverage has been approved by the Medical Service of the Health Funds. The German associations of psychiatry, neurology, palliative care, addictology, and pain medicine are watching these developments in the media, politics, and medical world with concern due to: the option to prescribe cannabis flowers despite the lack of sound evidence and against the recommendations of the German Medical Association; the lack of distinction between medical cannabis flowers and cannabis-based magistral and finished medical products; the indiscriminately positive reports on the efficacy of cannabis-based medicines for chronic pain and mental disorders; the attempts by the cannabis industry to influence physicians; the increase in potential indications by leaders of medical opinion paid by manufacturers of cannabis-based medicines. The medical associations make the following appeal to journalists: To report on the medical benefits and risks of cannabis-based medicines in a balanced manner. To physicians: to prescribe cannabis-based medicines with caution; to prefer magistral and finished medicinal products over cannabis flowers. To politicians: to consider data according to the standards of evidence-based medicine when making decisions and provide financial support for medical research into cannabis-based medicines. Abstract (w. list of references): view source »

MW 629: The voices of death doulas about their role in end‐of‐life care

Download the complete issue (PDF 850 KB)

This study aimed to explore the ambiguity of the role of death doulas in end‐of‐life (EoL) care including the skills, training and experience of death doulas; how the role is communicated to the community; and, the relationships to palliative care (PC) providers and other health professionals. People identifying as death doulas were invited to participate in an online survey…One hundred and ninety completed or partially completed surveys were received. Results showed diversity within, and some commonalities across the sample in terms of: training, experience and skills. Death doulas have emerged not only as a response to the overwhelming demands on families and carers, but also demands placed on healthcare professionals – including PC – at the EoL. They have identified gaps in health and social care provision, perhaps taking on tasks that health professionals don't have responsibility for. However, the roles and scope of practice of death doulas is not clear‐cut even within their cohort, which can then make it hard for patients and families when choosing a death doula, especially as a lack of regulation and standardised training means that doulas are working without oversight, and often in isolation. Abstract: view source »

Burnout and resilience after a decade in palliative care: What "survivors" have to teach us. A qualitative study of palliative care clinicians with more than 10 years of experience

JOURNAL OF PAIN & SYMPTOM MANAGEMENT | Online 26 August 2019 – Burnout is common amongst palliative care (PC) clinicians. Resilience helps to reduce burnout, compassion fatigue and is associated with longevity in PC. Four major themes emerged from this qualitative study: 1) Struggling; 2) Changing mindset; 3) Adapting; and, 4) Resilience. Intervening conditions such as self-awareness, reflection, and evolution were also important factors. The core phenomenon of this study was that of "transformational growth" – a process which PC clinicians have to go through before they achieve resilience. The authors also further classified resilience into both personal and collective resilience. Their findings highlight the evolving process of transformational growth which PC clinicians must repeatedly undergo as they strive towards sustained resilience and longevity. It also stresses the importance of taking individual and collective responsibility towards building a culture of personal and team resilience. Abstract (w. link to references): view source »

Defining primary palliative care for universal health coverage

THE LANCET, 2019;394(10199):621-622. Changing population demographics and disease epidemiology mean people are increasingly dying from chronic non-communicable diseases (NCDs) in low-income and middle-income countries (LMICs). Primary care-led management of chronic diseases, including palliative care (PC), is essential to deliver cost-effective universal health coverage (UHC) that does not impose financial hardship on people with NCDs. PC for all is only achievable if all members of the health workforce who care for people with life-limiting illnesses deliver it – in all health systems, irrespective of a country's income status. People are mostly at home for their last years of life, so primary care teams provide much of their PC. The PC delivered by primary care teams is well developed and promoted in some higher-income countries, but much less so in LMICs, although the 2018 WHO guidelines are an encouraging start. Efforts to achieve primary care-led UHC provide an opportunity to ensure that PC is being delivered at the primary care level in all parts of the world and to exploit synergies between disciplines. PC sits comfortably within primary care. Both deal with a wide spectrum of illnesses, not limited to a single disease process. At their best, both recognise the importance of a holistic approach, coordination of care, and person-centred care within a wider context. The clinical competencies and resources to achieve this care are often lacking among health workers, particularly in LMICs. Incorporating a PC approach into primary care addresses health-related suffering in advanced illness while facilitating development of core skills for primary care practitioners even in remote LMICs. Full text: view source »

MW 628: Home care and end-of-life hospital admissions: A retrospective interview study in English primary and secondary care

Download the complete issue (PDF 750 KB)

In this qualitative study, home-based EoL care appeared precarious. Hospital admission was considered by healthcare staff when there was insufficient nursing provision, or where family support, which was often extensive but under supported, was challenged. In these circumstances, home was not recognised to be a suitable place of care or death, justifying seeking care provision elsewhere. Home EoL care depended on substantial input from family and professional carers, both of which were under-resourced. Where either care was insufficient to meet the needs of patients, home was no longer deemed to be desirable by healthcare staff and hospital care was sought. Full text: view source »

Ethical issues when working with terminally ill people who desire to hasten the ends of their lives: A western perspective

ETHICS & BEHAVIOR | Online – Accessed 19 August 2019 – Terminally ill people might want to discuss the options they have of hastening their deaths with their psychologists who should therefore know the law that regulates euthanasia in the jurisdictions where they practice. The legal, and therefore ethical, situation that influences psychologists' position and terminally ill people's options, however, differs notably across jurisdictions. The authors' aim is to provide a brief moral-legal historical context that explains how the law reform processes in different jurisdictions created these different legal contexts and options that, in turn, influence psychologists' ethical position. They conclude by considering eight specific ethical issues at a conceptual level that might confront psychologists irrespective of where they practice. Abstract: view source »

A research literature review to determine how bereavement programs are evaluated

OMEGA – JOURNAL OF DEATH & DYING | Online – 20 August 2019 – A review of 44 research reports published between 2000 and 2018 on bereavement program evaluation was undertaken to identify evaluation methods and assess their apparent efficacy. Bereavement program evaluations varied considerably, with multiple data collection methods per study common (61.4%) over single methods (38.6%). Among these evaluation methods, a self-devised questionnaire was most often used (59.1%), followed by qualitative interviewing (36.4%), and the use of one or more of 35 data collection instruments such as grief inventories or depression scales (40.9%). Evaluative data were usually only collected once (77.3%), typically around program completion. Formal bereavement program evaluation appears to be ad hoc and sporadic, and potentially unlikely to provide the type and quality of information needed to retain, improve, expand, or abandon programs. Evaluation method developments including evaluation standards are needed to ensure recipients and others benefit as expected from bereavement programs. Abstract: view source »

MW 627: Emotions in the room: Common emotional reactions to discussions of poor prognosis and tools to address them

Download the complete issue (PDF 475 KB)

Drawing upon psychology research, principles of skilled clinical communication, and published approaches to discussions of serious illness, the authors summarize patients' common emotional reactions and coping strategies. They then provide suggestions for how to respond to them in clinic. Ultimately, effective management of emotional reactions to bad news may lead to earlier, more frequent, and more transparent discussions of prognosis, thus promoting cancer patients' understanding of, and adjustment to, their illness and improving the quality of their EoL care. Abstract (w. article highlights): view source »

Patterns of palliative care beliefs among adults in the U.S.: Analysis of a national cancer database

JOURNAL OF PAIN & SYMPTOM MANAGEMENT | Online – 10 August 2019 – Despite growing recognition of the need for public advocacy and involvement, data on public perception of palliative care (PC) is limited. The authors sought to examine patterns of beliefs, socio-demographic differences, and the impact of information source on perceptions of PC. Data were analyzed from the 2018 Health Information National Trends Survey, a representative sample of public knowledge on cancer-related information. Overall, 42.5% automatically thought of death when thinking about PC, and 31.7% equate PC with hospice care. Lower proportions perceived PC as incompatible with curative medical therapy: 15.1% believed PC means giving up, and 14.5% believed PC requires the discontinuation of other treatments. Perceptions varied by age, race, education attainment, income, and marital status. Six in every 10 American adults knowledgeable about PC have at least one documented misperception, with differential beliefs by socio-demographic groups. Source of information had little impact on PC beliefs. These findings may help focus future measures to educate the public about the role of PC in healthcare and address gaps in knowledge. Abstract (w. link to references): view source »

Using the term "palliative care": International survey of how palliative care researchers and academics perceive the term "palliative care"

JOURNAL OF PALLIATIVE MEDICINE | Online – 16 August 2019 – The term "palliative care" (PC) has often been found to have a negative connotation leading some to suggest rebranding and some services to change their name. Perceptions of the PC community about the term remain largely unexplored. This is a cross-sectional survey of attendees to the 10th World Research Congress of the European association for Palliative Care. For 40% [of survey respondents], the term hindered the positioning of PC, 28% worried about using the term, and 55% did not discuss these difficulties. The authors found significant differences between responses and several demographics (e.g., younger age and higher likelihood of worrying about the term). They identified that the term is widely in use, and that its limitations are seen as a cultural by-product, and not as something that a name change would solve. Senior PC academics, researchers, and clinicians have an onus to ensure that colleagues with limited PC experience have the opportunity to discuss and explore the impact of the term on the practice of research. Regarding the term itself, the community's views are conclusive: although using the term will remain a difficult task, the field's identity is in the name. Abstract: view source »

MW 626: Honoring the moral concerns of caregivers afraid of giving morphine

Download the complete issue (PDF 800 KB)

This can create two potential barriers: a belief that morphine kills or a belief that if one agrees to it, she or he is giving up on a loved one, surrendering hope or even displaying insufficient faith in God's ability to heal. Moreover, for caregivers who are not used to giving medication and who are providing care at home, simply giving morphine with a dropper can be frightening. What if I give the wrong dose? What if she has a bad reaction? What if she dies because of me? What if she goes to sleep and never wakes up again? What if this clouds her mind and I never get to talk with her again? Such moral concerns can activate powerful ideas of loyalty, responsibility, and protectiveness that override education and reassurances from healthcare professionals. If we see resistance to morphine as rooted solely in knowledge deficits, emotions, or misconceptions, we may dismiss caregivers as oppositional or irrational. We may miss these deeper moral imperatives. Instead, it can be useful to recognize them when they arise, acknowledge them, and affirm the positive intentions at their core despite the ways such resistance may run counter to effective symptom management. Usually, if we take time to ask, this moral dimension reveals itself. Full text: view source »

Palliative care after the Liverpool Care Pathway: A study of staff experiences

BRITISH JOURNAL OF NURSING, 2019;28(15):1001-1007. The objective of this study was to explore nurses' perceptions of end-of-life care following the withdrawal of the Liverpool Care Pathway (LCP). Thirteen semi-structured interviews were conducted with nurses working in palliative care (PC). Three themes emerged: 1) Perceptions of the LCP; 2) Prevailing issues; and, 3) Patients' and families' experiences. This study suggested that the removal of the pathway has not remedied the issues attributed to it. Further, the way in which the LCP was removed indicates that the non-expert media can play a negative role in how palliative care (PC) is perceived, which inhibits the care process. In this respect it is important that "insider" voices are also heard, in order to educate and also redress disinformation. Similarly, broader, persisting, contextual challenges facing staff need addressing in order to prevent a repeat of the issues leading to the removal of the LCP. Abstract: view source »

From the lay press

Cancer treatment at the end of life

THE NEW YORK TIMES | Online – 5 August 2019 – Too often, people with incurable cancers pursue therapy beyond any hope of benefit except perhaps to the pockets of Big Pharma. There are many reasons this happens. Some patients won't acknowledge that their death is imminent, and some doctors won't admit to them that nothing more can be done to contain the disease. Others with unstoppable cancers think that if they hang in there long enough, a new treatment may come along to reverse their fate. And some patients hope to ward off the Grim Reaper until after a special event, like a child's graduation or wedding or birth of a grandchild. Still others succumb to the urging of family members to try everything modern medicine can offer. Even when people with advanced cancer are relatively healthy, attempting yet another round of treatment often worsens quality of life (QoL) in their final weeks, according to a 2015 study of patients with metastatic solid tumors and a prognosis of six months or less to live.1 About half the patients … opted for end-stage chemotherapy. For those who were sickest at the start, QoL in their last week was no worse than if they had skipped further treatment. But among the 122 patients in the best shape initially, QoL was significantly worse for the 56% who opted for further chemotherapy. Holly G. Prigerson of Weill Cornell Medical College, who directed the study, expected the healthier patients to do better and was surprised by the results. As Dr. Charles D. Blanke wrote about the study… "Chemotherapy is supposed to either help people live better or help them live longer, and this study showed that chemotherapy did neither."2 Sometimes, however, chemotherapy or radiation is offered to patients near the end of life to alleviate debilitating symptoms. But the goal of such palliative therapy should be made clear to patients lest it give them false hopes for a cure. view source »

1. 'Chemotherapy use, performance status, and quality of life at the end of life,' JAMA Oncology, 23 July 2015. [Noted in 27 July 2015 issue of Media Watch (#420, p.3)] Full text: view source »

2. 'Chemotherapy near the end of life. First – and third and fourth (line) – do no harm,' JAMA Oncology, 2015;1(6):785-786. Abstract: view source »

MW 625: Top ten tips palliative care clinicians should know about caring for patients in the emergency department

Download the complete issue (PDF 675 KB)

To build effective, efficient, and sustainable partnerships, palliative clinicians are best served by understanding the ED's practice priorities. The authors, each EM and Hospice & Palliative Medicine board certified and in active practice, present 10 high-yield tips to optimize the ED consultation by PC teams. Abstract: view source »

Those 5 stages of grief: Does mourning really unfold like that?

PSYCHCENTRAL | Online – 30 July 2019 – Sometimes a psychological phenomenon becomes so well-known that even people with no training whatsoever in psychology are familiar with it. That's true for the five stages of grief, as described by the psychiatrist Elisabeth Kübler-Ross back in 1969. When someone dies, she suggested, the first reaction of the loved ones left behind is denial. Anger comes next, then bargaining, then depression. Finally, after all those stages have passed, mourners experience some acceptance of their loss. Originally, Kübler-Ross formulated the stages of grief to describe the reactions of patients who had terminal illnesses. But she never conducted a systematic study of people's reactions to the death of a loved one, and whether those reactions change over time in the way she predicted. Over the years, researchers have stepped in to try to see whether Kübler-Ross was right. They found that, with regard to the order in which various reactions peak over time, Kubler-Ross was spot on. She was wrong, though, about the frequency with which the bereaved experience different emotions. The most important conclusion of research on stages of grief, though, is that there is no one way to grieve. Different people mourn in different ways. Their stages may be different than the ones Kübler-Ross described, or they may not go through different stages at all. Full text: view source »

From the lay press

Why "Right-to-Try" created to help terminal patients hasn't worked

OHIO | WKRC Radio (Cincinnati) – 24 July 2019 – Experts say more than a year after the passage of the national "Right-to-Try" Act, little has changed. Dr. Arthur Caplan, a bioethicist at New York University Langone Health, considers "Right-to-Try" nothing more than feel-good politics, calling the law meaningless, "They promise what doesn't happen. Caplan says … the companies that make drugs still hold all the power. He would know. He currently sits on an independent committee which advises a major drug company on whether to approve requests for experimental treatments. He explained that while "Right-to-Try" did remove liability for companies that choose to make investigational drugs available, it did not create a requirement for them to say yes if there's a request. "In our country, drug development is a private business. It's their property. If the company doesn't want to do it, you can't get anything," Caplan said. Experts with years of experience in the prior system that required Federal Drug administration approval say the new law hasn't impacted them. view source »

MW 624: Can a single question about family members' sense of security during palliative care predict their well-being during bereavement? A longitudinal study during ongoing care and one year after the patient's death

Download the complete issue (PDF 625 KB)

The five variables with the highest importance were selected into the model (listed in decreasing importance): 1) Family members' mastery; 2) Nervousness and stress; 3) Self-efficacy; 4) Patient having gynaecological cancer; and 5) Family members' perceived quality of life. Moreover, the family members' sense of security during ongoing PC predicted ten variables indicating their well-being one year after the patient's death, e.g., psychological well-being, complicated grief symptoms, health related quality of life. The findings reveal possibilities to identify family members at risk of negative adjustment to bereavement in clinical practice and may help to develop interventions to support family members during ongoing palliative care. Full text: view source »

Understanding what works, why and in what circumstances in Hospice at Home Services for End-of-Life Care: Applying a realist logic of analysis to a systematically searched literature review

PALLIATIVE MEDICINE | In Press – Accessed 21 July 2019 – Forty-nine papers were reviewed, of which 34 were included contributing evidence to at least one of eight theory areas: 1) Marketing and referral; 2) Sustainable funding model; 3) Service responsiveness and availability; 4) Criteria for service admission; 5) Knowledge and skills of care providers; 6) Integration and co-ordination; 7) Anticipatory care,; and, 8) Support directed at carers. The literature review showed how it was possible to develop a coherent framework and test it against 34 published papers and abstracts. Central to this review was theory building, and as further evidence emerges, programme theories can be refined and tested against any new empirical evidence. Key statements: Hospice at home services comprise of a diverse range of services based on local needs and contextual factors but little is known about which models work best, for whom and under what circumstances. Key areas to be taken into account in optimal hospice at home provision include the importance of the sustainability of the hospice at home service, supporting carer needs and having anticipatory care in place. There are gaps in the evidence in understanding how referral categories, training for non-specialist staff and better care co-ordination influences optimal hospice at home service provision. Abstract: view source »

From the lay press

Working too hard for a good death: Has competitive dying become a thing?

FORBES | Online – 22 July 2019 – Now it seems, there is a growing need to compete over who will have the best death. You know, the one where we are at home, pain-free but alert, surrounded by our loving families, singing our favorite songs, fully at ease with our last moments of mortal life. For many of us, the reality will be quite different. Despite everyone's best efforts, we may die in a hospital. The kids may not make it in time from their homes in Los Angeles or Chicago. The medications that relieve our pain may also slow our thinking. And we may not have resolved all those family issues that lingered inexplicably for decades. What's troubling about this drive for a good death (or, perhaps in our competitive world, the best death) is that many of us never will achieve it – often for reasons out of our control. And that may leave our surviving loved ones with an even bigger sense of guilt than they already have. And paradoxically, those who cared the most may end up feeling the most guilty and depressed. Failing at some ideal of death may even make dying more difficult. Dr. Andreas Laupacis, a palliative care physician and professor of medicine at the University of Toronto, shared this concern in a wise 2018 essay about the idea of good death: "I worry that the term makes people who die with pain or psychological distress think that it is partially their fault…. They haven't tried hard enough or aren't tough enough." view source »

MW 623: Optimised clinical study recruitment in palliative care: Success strategies and lessons learned

Download the complete issue (PDF 650 KB)

The authors describe the recruiting strategies employed through the social marketing mix lens and consider if it would be a useful framework for future researchers to use at the planning stage. Successful recruitment strategies employed in HIDDen study included: 1) Addressing particular study-related factors; 2) Ensuring all patients were screened and offered participation if eligible; 3) Reducing impact on the clinical team through dedicated research nurses at sites; 4) Addressing research team issues with cross-cover between sites, where geographically possible; and, 5) Regular video conferencing meetings for support and collaborative solving of challenges. Limited pre-existing research infrastructure at most of the recruiting hospices created particular challenges. The SMMF provides a potential structure to help researchers to plan recruitment. To fully streamline trial set up and in order for hospice involvement in research to be realised systematically, a centralised approach to governance, organisational culture change whereby hospices embrace research as a legitimate purpose and consistent access to research staff are identified as key strategic elements promoting recruitment to studies in hospices. Abstract: view source »

Treatability statements in serious illness: The gap between what is said and what is heard

CAMBRIDGE QUARTERLY OF HEALTHCARE ETHICS, 2019;28(3):394-404. Empirical work has shown that patients and physicians have markedly divergent understandings of treatability statements (e.g., "This is a treatable condition," "We have treatments for your loved one") in the context of serious illness. Patients often understand treatability statements as conveying good news for prognosis and quality of life (QoL). In contrast, physicians often do not intend treatability statements to convey improvement in prognosis or QoL, but merely that a treatment is available. Similarly, patients often understand treatability statements as conveying encouragement to hope and pursue further treatment, though this may not be intended by physicians. This radical divergence in understandings may lead to severe miscommunication. The authors seek to better understand this divergence through linguistic theory... The divergence between the physician's intended meaning and the patient's received meaning can be understood to arise from the lack of shared experience between physicians and patients, and the differing assumptions that each party makes about conversations. Abstract (w. list of references): view source »

WHO: Pain Management Guidelines

IAHPC's response to a U.S. House of Representatives report and WHO's reaction to it

INTERNATIONAL ASSOCIATION OF HOSPICE & PALLIATIVE CARE (IAHPC) | Online – Accessed 15 July 2019 – On the 22 May 2019, two members of the U.S. House of Representatives, published a report claiming (falsely) that the development of two World Health Organization (WHO) guidance documents (Ensuring Balance in National Policies on Controlled Substances and Guidelines on the Pharmacological treatment of Persisting Pain in Children with Medical Illnesses, was influenced by the interests of Purdue Pharma, through corrupted organizations and individuals serving the interests of that company. Among the organizations and individuals named in this report are the IAHPC, the International Children's Palliative Care Network, the European Association for Palliative Care and others. The two U.S. Representatives argue that by developing, distributing, and promoting these guidelines, the WHO was helping the pharmaceutical company increase its global market share, putting other countries at risk of replicating the U.S. "opioid crisis." No staff member of the offices of the U.S. representatives contacted any of us to verify or confirm the claims in their report before publishing it. On 19 June, WHO Director-General Dr. Tedros Adhanom Ghebreyesus sent a letter to the two U.S. Representatives informing them that the WHO had taken the concerns raised by the report "very seriously," and that the agency had decided to "discontinue" and "update" the two guidelines. The WHO has now issued a statement on its website. The WHO response took all the academic and civil society experts and organizations involved in the development of these now discontinued guidelines by surprise. It also shocked the professional associations, institutions, and government representatives who have used and applied these guidance documents to improve access for patients with medical needs. Both documents were developed in order to improve the situation of millions in the world who suffer from inadequate access to appropriate medications, including pain medications. The guidelines were not commercially initiated, funded, or influenced. view source »

MW 622: How do hospital-based nurses and physicians identify the palliative phase in their patients and what difficulties exist? A qualitative interview study

Download the complete issue (PDF 550 KB)

When benefits of treatment no longer outweigh the negatives, this was considered an, albeit late, identification point. To start a conversation on a patients' palliative care needs was found to be difficult. Therefore, some respondents wait for patients to vocalize preferences themselves. Many professionals rely on interprofessional collaboration for identification, however uncertainty exist about responsibilities. Difficulties in identification occurred because of variance in definitions, unpredictability of non-oncological diseases, focus on treatment and difficulties in communication and collaboration. Full text: view source »

End-of-life care for people with alcohol and drug problems: Findings from a Rapid Evidence Assessment

HEALTH & SOCIAL CARE IN THE COMMUNITY | Online – 11 July 2019 – This Rapid Evidence Assessment set out to explore current responses to and models of practice for, people living with problematic substance use and palliative and end-of-life care (EoLC) conditions. There is a dearth of research available on this topic and thus the focus of this review was broadened to identify what evidence was available, its focus, quality and the gaps in the research evidence base. The resulting body of work comprised 60 papers, primarily from peer‐reviewed journals. It was quite disparate in focus, with a diverse range of research populations, research questions and methodological choices. The available evidence resulted in two clear, but limited, groups of papers, those focussing on pain management and prescribing and those focussing on homelessness, substance use and EoLC. A third group included a small body of work on alcohol and palliative or EoLC and a small number of other papers including co‐existing mental health or HIV‐related conditions. This is clearly an area of work where far more research is needed. It is a new area of work and research focus and that has to be considered in considering the authors' findings. However, the gaps identified are considerable and need to be filled in order to provide an evidence base on which to build future good policy and practice, both in the U.K. and internationally. Ultimately, this work is needed to ensure that this growing group of people have good quality care and equal access to service provision. Full text: view source »

Evidence-based palliative care: How can we account for the messy world of practice?

PALLIATIVE MEDICINE | Online – 9 July 2019 – There are inherent limitations in how current evidence-based palliative care (PC) accounts for the increasingly "messy world of practice." For example, the persistent use of anticholinergic drugs for respiratory tract secretions, despite a lack of research evidence to support their use, underscores how difficult it can be to apply clinical research in PC. Evidence in PC reflects a complex constellation of "constructed facts, propositions, experiences, biographies and histories and is ultimately an exercise of judgement bounded by time and context." We need to better understand how health care professionals of any discipline and in all care settings and PC populations balance research findings, guidelines, protocols and policies with clinical judgement and individualising care in situ. Full text: view source »

MW 621: "It could have been me": An interpretive phenomenological analysis of healthcare providers' experiences caring for adolescents and young adults with terminal cancer

Download the complete issue (PDF 500 KB)

The purpose of the current study was to understand HCPs' experiences caring for AYAs with terminal cancer. In-depth semi-structured interviews with participants in this study revealed four superordinate themes present in the data: 1) Many unknowns and uncertainties associated with providing care for AYAs compounded by minimal or no training specifically concerning this population; 2) An intense emotional experience compared with caring for patients with terminal cancer of other ages; 3) Personal identification with patients and their families; and, 4) Attempts to make sense of the circumstance thwarted by feelings of injustice and unfairness. HCPs' experiences highlight the need for training to support clinicians in caring for AYAs with terminal cancer to optimize their own well-being and delivery of healthcare services to this population. Abstract: view source »

Vlogging at the end of life

THE LANCET ONCOLOGY, 2019;20(7):911-912. Despite advances in treatment options, many patients diagnosed with cancer ultimately face the premature ending of their life. Under these circumstances, patients are confronted with the challenge of re-articulating their personal experiences and identities in ways that accommodate a changed reality and help them create meaning at the end of life (EoL). Their storytelling constitutes a particular type of illness story, distinct from other related categories. For example, although restitution narratives are driven by recovery, EoL stories come forth in relation to unattainable health and the contemplation of death. Healthcare professionals may support the storytelling process. Techniques include diary keeping, reading stories written by other patients, and the co-creation of stories between patients and spiritual guides. Beyond having a therapeutic function, these personal stories are valuable pedagogical materials that help healthcare professionals understand the EoL experience and they create more efficient care for patients. Abstract: view source »

From the lay press

Charity succeeds in battle to ring-fence National Health Service funding for children's hospices

U.K. (England) | Third Sector (Twickenham) – 2 July 2019 – Together for Short Lives has won its battle to ring-fence National Health Service (NHS) funding for children's hospices, which is due to more than double to £25 million a year. England promised last year that funding for children's hospices would more than double from £12 million to £25 million by 2023/24, dependent on clinical commissioning groups providing additional match funding to the NHS's £7 million investment. But Together for Short Lives last month accused NHS England of reneging on its promise to properly fund children's hospices by making the money available to non-palliative care services too. The charity had also warned that the average amount received by each children's hospice had fallen by £7,000 on average to £364,076 a year, with 74% expecting a real-terms cut in the money they received in 2018-2019. Following Together for Short Lives' intervention, NHS England said that it would provide the full £25 million itself without input from Clinical Commissioning Groups (CCGs). NHS England will also carry out an assessment to understand whether additional funding, either nationally or from CCGs, is needed to provide children's palliative care in non-hospice settings. view source »

MW 620: Top ten tips palliative care clinicians should know about telepalliative care

Download the complete issue (PDF 525 KB)

Telepalliative care can take many forms, including, but not limited to, video visits between clinicians and patients, smartphone applications to promote caregiver well-being, and remote patient symptom-monitoring programs. This article, created by experts in telehealth and palliative care, provides a review of the current evidence for telepalliative care and potential applications and practical tips for using the technology. Abstract: view source »

The arc of generational care: A case series considering grandparent roles and care needs in pediatric palliative care

JOURNAL OF SOCIAL WORK IN END-OF-LIFE & PALLIATIVE CARE | Online – 22 June 2019 – Children receiving palliative care (PC) services are held within the context of a family and often within multiple-generational arms. The purpose of this case series paper is to recognize grandparents' roles in their family system from a personal, cultural, and anthropological perspective; to explore emotions and experiences as applies to grandparents of children receiving PC; and to provide tangible insight into caring well for families across the generational arc. Abstract: view source »

Establishing key criteria to define and compare models of specialist palliative care: A mixed-methods study using qualitative interviews and Delphi survey

PALLIATIVE MEDICINE | Online – 28 June 2019 – Specialist palliative care (SPC) services have various configurations of staff, processes and interventions, which determine how care is delivered. Until now, there has not been a clear set of criteria to define models of U.K. SPC, making it challenging to compare different models of care provided by services. The authors identify 20 criteria to characterise and differentiate models of SPC – a major paradigm shift to enable accurate reporting and comparison in practice and research. Full text: view source »

MW 619: Do we know what we mean? An examination of the use of the phrase "goals of care" in the literature

Download the complete issue (PDF 550 KB)

The agenda was focused on the outcomes of the conversation compared with factors such as hopes, worries, values, and personhood. The majority did not utilize the phrase "palliative care"; those who did frequently used "palliative care" incorrectly. The definition of the phrase GoC is most often assumed with its context centered on the needs of the health care system and linked to a specific medical topic. It is most commonly used to describe determinations of the patient's therapy intent, second most commonly to describe end-of-life conversations. The use of the phrase GoC within the palliative literature does not differ notably from its use in the broader literature. Abstract: view source »

How and how much is spirituality discussed in palliative care consultations for advanced cancer patients with and without a question prompt list?

PATIENT EDUCATION & COUNSELING | Online – 19 June 2019 – Patients want to discuss spirituality more with their doctors but feel disempowered. Question prompt lists (QPLs) assist conversations. This was a sub-study of a trial in which palliative care (PC) patients were randomised to either receive a QPL prior to a consultation or not, to see whether its provision influenced advanced cancer patients'/ caregivers' questions and discussion of topics relevant to end-of-life care during consultations with a PC physician. 174 patients participated. Spirituality was discussed in half the consultations. Patients receiving a QPL discussed spirituality 1.38 times more than controls. This finding did not reach statistical significance. First PC consultation and being asked about their concerns by the doctor were significant predictors of a spiritual discussion. Abstract: view source »

From the lay press

Children's hospices "to shut if National Health Surface does not increase funding"

U.K (England) | BBC News – 19 June 2019 – Children's hospices in England will be forced to cut services or shut unless the National Health Service (NHS) increases its funding, a charity has warned. Together for Short Lives, which helps terminally ill children, highlighted a "dangerous cocktail" of higher costs and a drop in state funding. Its report examined funding for 27 of the 34 children's hospices in England.1 But NHS England said funding for children's end-of-life care was "going up every year." According to Together for Short Lives, children's hospices in England each spend an average of £3.7 million per year – which works out as a total annual spend across the country of £125 million. Their spending has increased by 4.5% since 2016-2017, it said. But the percentage which the state contributes has fallen from 27% to 21% in five years, the report said – and hospices have been forced to use their reserve funds or stop services. view source »

1. 'Statutory Funding for Children's Hospice and Palliative Care Charities in England, 2018-2019,' Together for Short Lives, June 2019. Download/view at: view source »

MW 618: Organizing psychologists, behavioral scientists, and allied professionals: Formation of the Society of Behavioral Medicine's Palliative Care Special Interest Group

Download the complete issue (PDF 525 KB)

The authors held the first meeting of the Palliative Care Special Interest Group at the Society of Behavioral Medicine's annual conference in March 2019. The meeting served as a mechanism for organizing psychologists involved in PC and improving their connections with allied professionals. Abstract (w. link to references): view source »

Virtual reality: Endless potential in pediatric palliative care

JOURNAL OF PALLIATIVE MEDICINE | Online – 6 June 2019 – Pediatric palliative care (PC) deals with the physical, psychosocial, and spiritual concerns of patients and their families. And to do this, clinicians must use all the tools at their disposal, including pharmacological and non-pharmacological modalities. Virtual reality is quickly becoming a useful tool in many areas of medicine, including surgical planning, simulation training, rehabilitation, and pain prevention and treatment. Recently it has been used in the adult PC population for symptom management, and memory and legacy creation. The authors present a case report for, what they believe to be, the first time in the pediatric PC population. Abstract: view source »

Which outcome domains are important in palliative care and when? An international expert consensus workshop, using the nominal group technique

PALLIATIVE MEDICINE | Online – 12 June 2019 – When capturing patient-level outcomes in palliative care (PC), it is essential to identify which outcome domains are most important and focus efforts to capture these, in order to improve quality of care and minimise collection burden. In all, 33 clinicians and researchers working globally in PC outcome measurement participated in an international expert consensus workshop. The domains of "overall wellbeing/quality of life," "pain," and "information needs/ preferences" are recommended for regular measurement, assessed using "phase of Illness." International adoption of these recommendations will help standardise approaches to improving the quality of PC. Abstract: view source »

Publishing Matters

The association between quality measures of medical university press releases and their corresponding news stories. Important information missing

PLOS ONE | Online – 12 June 2019 – This large study of medical university press releases and corresponding news stories showed that important measures of a scientific study such as funding and study limitations were omitted to a very large extent. The lay public and health personnel as well as policy makers, politicians and other decision makers may be misled by incomplete and partly inaccurate representations of scientific studies which could negatively affect important health-related behaviours and decisions. Full text: view source »

MW 617: Life Café. A co-designed method of engagement

Download the complete issue (PDF 700 KB)

The community engagement focuses on understanding what is important to individuals in life, care and EoL. A methodology, named the Life Café, has been developed to gather research in an informal manner within community groups and familiar environments. The Life Café comprises critical artifacts, activities and resources, co-developed with community members developed to answer the research questions. The Life Café has become a product that can be used across different services to establish what matters to individuals and enable difficult conversations. Abstract: view source »

That was then, this is now: Using palliative care principles to guide opioid prescribing

JOURNAL OF PALLIATIVE MEDICINE, 2019;22(6):612-614. Palliative care (PC) providers are committed to alleviating pain, and opioid therapy is a very important option for effective pain management. Yet we do not want to contribute to the growing problem of opioid misuse, overdose, and accidental death. So the question becomes how do we balance the important goal of reducing suffering with our equally compelling desire to act as responsible providers. Consensus-based PC principles may serve as a clinically useful guide to the decision-making process about whether or not to prescribe opioids. The approach using these familiar core principles is probably best illustrated by the following two patients – Mr. A and Mrs. B – and their complex pain management issues. First page view: view source »

Hospice philosophy in practice: Toward an authentic death

OMEGA JOURNAL OF DEATH & DYING | Online – 3 June 2019 – This article examines how hospice philosophy works in contemporary Danish hospice practice. The still sparse literature on Danish hospices indicates that hospice philosophy is influencing professional practice. In international palliative care literature, hospice philosophy is challenged for being overly normative in its ideal of the good death or on the other hand as threatened by the medical model. Drawing on the idea of hospice philosophy as providing meaning for everyday practice, this article explores how it is incorporated within the institutional order of contemporary Danish hospices. An ethnographic study was informed by participant observation and 49 interviews with professionals, patients, and families at three hospices in Denmark. The findings contribute to further understanding of the complexity of maintaining hospice philosophy in contemporary practice. Hospice practice works in an interpretive way with hospice philosophy to offer a "lived" philosophy and a means to an authentic death. Abstract: view source »

MW 616: Impact of informational and relational continuity for people with palliative care needs: A mixed methods rapid review

Download the complete issue (PDF 500 KB)

However, the contrasts in reports of patients who had, and had not, perceived continuity in their care in this review demonstrate the beneficial effects that continuity can have in terms of feeling safe, known and supported. While continuity may not be the panacea for all the challenges in providing high quality PC, the authors believe that good continuity, in a range of forms, can go a long way to improving a difficult time in a family or a person's life. This rapid review highlights the impact that continuity of care can have on the experiences of patients receiving PC. The evidence for the impact of continuity on place of death and hospital admissions is limited. Methods for enhancing, and recording continuity should be considered in the design and development of future healthcare interventions to support people receiving PC. Full text: view source »

When and how to use data from randomised trials to develop or validate prognostic models

BMJ OPEN | Online – 29 May 2019 – The development and validation of prognostic prediction models requires substantial volumes of high quality information on relevant predictors and patient health outcomes. Primary data collection dedicated to prognostic model (development or validation) research could come with substantial time and costs and can be seen as a waste of resources if suitable data are already available. Randomised clinical trials are a source of high quality clinical data with a largely untapped potential for use in further research. This article addresses when and how data from a randomised clinical trial can be used additionally for prognostic model research, and provides guidance for researchers with access to trial data to evaluate the suitability of their data for the development and validation of prognostic prediction models. Abstract: view source »

Hospice in the U.S.

Implementation of a clinical pharmacist service in the hospice setting: Financial and clinical impacts

JOURNAL OF PAIN & PALLIATIVE CARE PHARMACOTHERAPY | Online – 28 May 2019 – Hospice is a unique environment among all clinical fields of practice. Although every other specialty aims to work toward a curative goal or prevention of mortality, hospice completely redirects focus solely on pain and symptom management and sustaining the highest quality of life possible. Addition of a clinical pharmacist to the interdisciplinary group (IDG) is not common, but Haven: Advanced Illness Care [Gainesville, Florida] added a clinical pharmacist to the team in 2017. Substantial financial impacts were made in the first year, and clinical impacts were well regarded by physicians and nurses. A cost savings of $427,705 was observed, and the clinical pharmacist provided a great deal of expertise to the IDG. Adding a clinical pharmacist to the IDG of other hospice organizations may prove to be a worthy investment. Abstract: view source »

MW 615: Can artificial intelligence predict the end of Life…and do we really want to know?

Download the complete issue (PDF 600 KB)

According to additional studies by the university, it's estimated that 80% of Americans prefer to die at home, but only 20% see that wish fulfilled. In reality, 80% of those facing death pass away in a combination of hospital and nursing home settings. So, a calculated prediction may be able to grant the terminally ill a final wish rather than prolonging a painful process. Although one may consider death a final resting place, the mental effects that one undergoes are anything but. Elisabeth Kübler-Ross explains the five stages of death…as a series of psychological steps that lead to accepting m mortality. However, could AI alleviate the struggle by offering an acceleration that preserves mental health in the face of mortality, or doe knowing one's time of death place extra strain on their ability to cope? First page view: view source »

Global palliative care: From need to action

THE LANCET GLOBAL HEALTH | Online – 22 May 2019 – Katherine Sleeman and colleagues report the first worldwide projection of the future global burden of serious health-related suffering.1 The calculation followed the methods used by the Lancet Commission on Palliative Care & Pain Relief assessing global palliative care need. Combining these methods with World Health Organization's revised global and regional projections of mortality up to 2060, the authors estimate the global burden of serious health-related suffering requiring PC by world regions and age groups for 20 health conditions. The vision of the future delivered by this article is alarming: "By 2060, an estimated 48 million people (47% of all deaths globally) will die each year with serious health-related suffering, and 83% of these deaths will occur in low-income and middle-income countries." These numbers indicate that 130,000 people worldwide will die every day with serious health-related suffering by 2060, the equivalent to twice the size of a Super Bowl stadium. The real burden of serious health-related suffering is even greater because the authors' calculations are based on mortality data and do not include the burden of people living with serious health-related suffering who do not die in a given period. Full text: view source »

1. 'The escalating global burden of serious health-related suffering: Projections to 2060 by world regions, age groups, and health conditions,' The Lancet Global Health, published online 22 May 2019. Full text: view source »

MW 614: Doctors' perceptions of how resource limitations relate to futility in end-of-life decision making: A qualitative analysis

Download the complete issue (PDF 550 KB)

Doctors experienced moral distress due to the resource implications of providing futile treatment and the lack of administrative supports for bedside rationing. Doctors' ability to distinguish between futility and rationing would be enhanced through regulatory support for explicit rationing and strategies to support doctors' role in rationing at the bedside. Medical policies should address the distinction between resource limitations and futility to promote legitimacy in end-of-life decision making. Abstract: view source »

Identifying palliative care champions to promote high‐quality care to those with serious illness

JOURNAL OF THE AMERICAN GERIATRIC SOCIETY | Online – 10 May 2019 – Leading medical authorities advocate for routine integration of palliative care (PC) for all major causes of death in the U.S. With rapid growth and acceptance, the field of PC is tasked with addressing a compelling question of its time: "Who will deliver timely, evidence‐based PC to all who should benefit?" The current number of PC specialists will not suffice to meet the needs of persons with serious illness. In 2010, initial estimates quantified the shortage at 6,000 to 18,000 additional PC physicians needed to fully staff existing programs. Unfortunately, the predicted number of specialty physicians in 2030 will likely not be larger than the workforce in existence today. These findings result in a physician‐to‐serious‐illness‐person ratio of about 1:28 000 in 2030. To address the workforce shortage, stronger alignment is needed between intensity of patient needs and provision of PC services. Such an alignment better harnesses the talents of those in a position to deliver core PC services (such as discussing goals of care with patients or managing their symptoms) while engaging PC specialists to address more complex issues. The authors introduce the concept of "Palliative Care Champions," who sit at the nexus between specialty PC and the larger clinical workforce. Acknowledging that the needs of most patients can be met by clinicians who have received basic PC training, and that specialty PC is not always available for those with more complex needs, there exists an important opportunity for those with additional interest to scale training and quality improvement to fill this void. Abstract: view source »

A survey of hospice professionals regarding medical cannabis practices

JOURNAL OF PALLIATIVE MEDICINE | Online – 16 May 2019 – With medical cannabis (MC) remaining illegal at the federal level [in the U.S.], hospice programs are unsure how to handle requests for MC, particularly since hospice is largely funded with federal dollars. Three hundred ten hospice professionals responded to an anonymous online survey. More than half of the respondents were nurses followed by administrators and physicians. Regardless of legal status, hospice staff members were overwhelmingly in agreement that MC is appropriate for hospice patients to have access to and use. Several barriers to use were identified including discordant legal status between state and federal governments, concerns about clinical efficacy and safety, and a myriad of other societal factors. Wide variations in MC documentation and education practices between hospices were noted. The data suggest overwhelming support for MC use in the hospice setting. Abstract: view source »

MW 613: Goals‐of‐care discussions for adult patients nearing end of life in emergency departments: A systematic review

Download the complete issue (PDF 550 KB)

Expert panels have suggested requirements and content for conversations with little supporting evidence. There was no evidence for how emergency conversations differ to those in other settings, nor for harms or benefits for holding GoC conversations in emergency departments (EDs). Increased GoC conversations increased hospice referral and reduced in‐patient admissions. Most studies were of moderate quality only, outcomes were not standardised and sample sizes were small. "Goals‐of‐care" is used inconsistently across the literature. This is the first systematic review regarding GoC discussions in EDs. Further research is needed on all aspects of these conversations. Abstract: view source »

Compassionate use of unauthorized drugs: Legal regulations and ethical challenges

EUROPEAN JOURNAL OF INTERNAL MEDICINE | Online – 26 April 2019 – Compassionate use (also referred to as expanded access) is therapeutic use of unauthorized drugs outside of clinical trials. The objective of this review is to discuss practical aspects of the current legal regulations concerning compassionate use that have been introduced in the European Union, the U.S. (both the Food & Drug Administration regulations and right-to-try laws), Canada and Australia. The authors present main ethical challenges associated with use of unauthorized drugs such as possible difficulties with obtaining informed consent and fair patient selection. They discuss guidelines, especially those contained in the Declaration of Helsinki, which may aid doctors in the ethical conduct of compassionate treatments. Abstract (w. link to references): view source »

Awareness of palliative care among a nationally representative sample of U.S. adults

JOURNAL OF PALLIATIVE MEDICINE | Online – 30 April 2019 – The authors identified 3,194 respondents (weighted sample size: 229,591,005) who met their inclusion criteria. About 71% (2,097) of all respondents had no knowledge of palliative care (PC) and 84.5% of Hispanic respondents had no knowledge of PC. Multivariable analyses indicated the middle-aged…and elder population&helliphave a significantly better knowledge of PC than those under age 50. Common misconceptions existed in respondents, even those who had self-reported adequate knowledge of PC. Greater efforts are needed to promote PC and reduce the misconceptions of palliative care in the general population. Abstract: view source »

MW 612: The right to grieve

Download the complete issue (PDF 500 KB)

Despite an increasing emphasis on empathic care of the dying as a core competency to master during training, very little formal training is offered in coping skills for the emotions that arise from the care of a dying patient. Residents may develop symptoms of post-traumatic stress disorder after patient death, with an increasing frequency as the level of training increases. While attending physicians are expected to provide support for physician trainees through the experience of a patient death, they may not always be able to do so because they are sometimes in need of support themselves. Even palliative care specialists who are considered "experts in death" may suffer silently, unable to reach out for support. Some physicians think about quitting clinical medicine after an emotional death of a patient, and maladaptive coping, such as avoidance of emotion and substance abuse, exists through all stages of medical training and practice. This may be perpetuated and exacerbated by the culture of medicine where physicians who cry risk being considered unprofessional, weak, or emotionally unstable. Full text: view source »

Perspectives on volunteer-professional collaboration in palliative care: A qualitative study among volunteers, patients, family carers and healthcare professionals

JOURNAL OF PAIN & SYMPTOM MANAGEMENT | Online – 24 April 2019 – Governments intend to meet resource constraints in professional palliative care (PC) by stimulating informal care, including volunteerism. However, little is known about current volunteer-professional collaboration. Such insights are relevant for future policy development regarding volunteer efficiency, quality of care and the capacity of volunteer care to support healthcare services and professionals. A qualitative study was conducted with volunteers, nurses, psychologists and family physicians, and with people with serious illnesses and with family carers. Participants were recruited from hospital, home-care, day-care and live-in services in Flanders, Belgium. Volunteers are in the front line of PC provision and therefore collaborate intensely with nurses, particularly in dedicated PC services. However, collaboration with other professionals is limited. The presence and availability of nurses was found to be crucial for volunteers, both for support and to achieve integration through collaboration. Abstract (w. link to references): view source »

Special Issue on medical cannabis use in palliative care

JOURNAL OF PALLIATIVE MEDICINE | Online – Accessed 22 April 2019 – Patients are aware that medical cannabis and cannabinoid derivatives are available to treat pain and symptoms. However, the medical literature to guide palliative medicine physicians in recommending its use is not yet well developed. The special issue brings together the best medical information available. The goal is to supply helpful information to clinicians and to provide the foundation for future research in the exploration of cannabis use in palliative care. The special issue is scheduled to be published in October 2019. Preview (available through 6 May 2019): view source »

MW 611: Supporting families involved in court cases about life‐sustaining treatment: Working as academics, advocates and activists

Download the complete issue (PDF 450 KB)

They describe how our work evolved from personal experience through traditional social science research to public engagement activities and then to advocacy and activism. The authors reflect on the challenges they faced in navigating the relationship between their research, advocacy, and activism, and the implications of these challenges for their research ethics and methodology – giving practical examples of how they worked with research participants, wrote up case studies and developed interventions into legal debates. The authors also address the implications of the impact agenda – imposed by the British Research Excellence Framework – for their actions as scholar‐activists. Finally, the authors ask how practicing at the borders of academia, advocacy, and activism can inform research – helping to contextualize, sensitize, and engage theory with practice, leading to a more robust analysis of data and its implications, and helping to ensure a dialogue between research, theory, lived experience, front‐line practice, law, and public policy. Abstract: view source »

Better guidance for surrogates

THE HASTINGS REPORT, 2019;49(2):2. The author of the article, 'Changing the question,' addresses how to help the surrogate deal with a treatment decision.1 A core insight he offers is that the structure of the surrogate's decision has been misunderstood and the misunderstanding makes the task yet harder. As usually understood, the surrogate is supposed to be guided by the question, what would the patient choose, if the patient were making the choice herself? The author argues that this conception is impossible, and that the surrogate's task is instead to consider the patient's best interests, as illuminated in part by the patient's expressed values and past choices. This understanding leads, he argues, to a different guiding question: what could the patient choose, given her values? Full text: view source »

MW 610: Feeling like a burden to others and the wish to hasten death in patients with advanced illness: A systematic review

Download the complete issue (PDF 975 KB)

14 qualitative studies, reported in 16 articles, met the inclusion criteria. The analysis identified two themes: the personal and social dimensions that could help to explain the feeling of being a burden in these patients. These dimensions reveal how this feeling is linked to physical, psychological/ emotional, existential and social factors. The feeling of being a burden cannot be understood without considering patients' personal interpretation of their dependency or care needs, and hence it is also necessary to understand their biographical background. Such an understanding is crucial to inform clinical policies based on the moral duty to provide all patients with humane care. Abstract: view source »

Elisabeth Kübler-Ross and the "five stages" model in a sampling of recent textbooks published in 10 countries outside the U.S.

OMEGA – JOURNAL OF DEATH & DYING | Online – 11 April 2019 – A previous article in this journal examined some aspects of the enduring influence of Elisabeth Kübler-Ross's "five stages" model through a sampling of recent American textbooks in selected academic disciplines and professional fields. This article offers a parallel sampling of 47 textbooks published in 10 different countries outside the U.S. The questions to be answered are as follows: 1) Does the "five stages" model appear without significant change in the textbooks described here?; 2) Is the "five stages" model applied in these textbooks to issues involving loss, grief, and bereavement as well as to those involving terminal illness and dying?; 3) Is the "five stages" model criticized in some or all of these textbooks?; 4) If so, is the criticism sufficient to argue that, while the "five stages" model might be presented as an important historical framework, it should no longer be regarded as a sound theory to guide contemporary education and practice? Abstract: view source »

What do family caregivers know about palliative care? Results from a national survey [in the U.S.]

PALLIATIVE & SUPPORTIVE CARE | Online – 8 April 2019 – Despite their key role in caring for individuals with serious, chronic illness, there have been no national studies examining family caregiver (FCGs) awareness and perceptions of palliative care (PC). The authors' objectives were to ascertain level of knowledge of PC among U.S. FCGs and describe demographic variation in awareness and perceptions of PC. Using the 2018 National Cancer Institute Health Information National Trends Survey, they identified unpaid FCG caring or making healthcare decisions for someone with a medical, behavioral, disability, or other condition. Respondents were asked about their awareness of the term "palliative care" and, if aware, how much they agreed with statements representing common (mis)perceptions about PC (e.g., "palliative care is the same as hospice"). One-half of FCGs of adults with serious chronic illness have never heard of PC. Even among those who had heard of PC, the majority do not distinguish it from hospice care and death. Given the role FCGs may play in decisions to access PC, public messaging efforts are needed to clarify PC services in a way that is patient- and family-centered. Abstract (w. list of references): view source »

MW 609: Compelling results that a problem‐solving intervention improves hospice family caregiver outcomes

Download the complete issue (PDF 600 KB)

Although the caregiving experience can be rewarding for family members, it is frequently burdensome as well. Hospice FCGs frequently report feeling unprepared and anxious about their role – and that caregiving tasks can be physically and emotionally taxing. Some evidence suggests that caregiving‐related burden may be detrimental to one's health. To improve care for patients at the EoL, scholars, clinicians, and policymakers must do a much better job of supporting natural support networks and informal caregivers. Unfortunately, hospice FCGs are an understudied population. Hospice researchers Demiris, Parker Oliver, Washington, and Pike should be commended for their recent successful clinical trial evaluating the Problem‐Solving Intervention to Support Caregivers in End‐of‐Life Care Settings (PISCES) intervention.1 Editorial (full text): view source »

1. 'A problem‐solving intervention for hospice family caregivers: A randomized clinical trial,' Journal of the American Geriatric society, published online 4 April 2019. Abstract: view source »

The myth of "no place like home" when it comes to end of life

MEDICAL PRESS | Online – 3 April 2019 – In a new study, Jacquelyn Benson, assistant professor of human development and family science at the University of Missouri, found that home deaths can be physically and emotionally challenging, especially for caregivers.1 "The realities of a home death experience present challenges for family members, especially those with limited resources and social support," Benson said. "It is important that people understand that home death does not automatically equate a good death." In recent decades, there has been a groundswell of social movements championing the ideal of dying at home. According to the Centers for Disease Control & Prevention, home deaths in the U.S. increased nearly 30% from 2000 to 2014, while deaths in hospitals, nursing homes and long-term care communities dropped. Researchers uncovered several themes that exposed the challenges that are often not included in conversations about dying at home. In some cases, challenges arose because there was uncertainty for the decision maker, and some caregivers were not prepared for making decisions regarding the end of a loved one's life. The researchers also found that financial resources and strong relationships can help in differentiating good deaths from bad ones. Researchers found that the "good" death experiences involved high levels of emotional support for the dying individuals and the caregivers, and that the place of death played less of a role. Full text: view source »

1. 'The motivations and consequences of dying at home: Family caregiver perspectives,' Journal of Housing For the Elderly, 2018;32(3-4):278-336 (noted in the 5 November 2018 issue of Media Watch, #588, p.8). Abstract: view source »

MW 608: Preventive drugs in the last year of life of older adults with cancer: Is there room for deprescribing?

Download the complete issue (PDF 500 KB)

Preventive drugs frequently were continued until the final month of life, including antihypertensives, platelet aggregation inhibitors, anticoagulants, statins, and oral antidiabetics. Median drug costs amounted to $1,482…per person, including $213…for preventive therapies. Compared with older adults who died with lung cancer…, costs for preventive drugs were higher among older adults who died with pancreatic cancer…or gynecological cancers… There was no decrease noted with regard to the cost of preventive drugs throughout the last year of life. Adequate deprescribing strategies are warranted to reduce the burden of drugs with limited clinical benefit near the end of life. Abstract: view source »

Appropriate frameworks for economic evaluation of end-of-life care: A qualitative investigation with stakeholders

PALLIATIVE MEDICINE | Online – 27 March 2019 – The objective of this study was to elicit the views of expert stakeholders on the purpose and evaluation of supportive end-of-life (EoL) care, and explore how different purposes of EoL care imply the need for different evaluative frameworks. The authors interviewed twenty professionals working in or visiting the U.K. or Republic of Ireland, with clinical experience and/or working as academics in health-related disciplines. Four purposes of EoL care were identified from, and are critiqued with, the aid of the qualitative data to: 1) Improve health; 2) Enable patients to die in their preferred place; 3) Enable the patient to experience a good death; and; 4) Enable the patient to experience a good death, and those who are close to the patient to have an experience which is as free as possible from fear, stress and distress. Managing symptoms and reducing anxiety were considered to be core objectives of EoL care and fit with the wider health service objective of improving/maximising health. A single objective across the entire health system ensures consistency in the way that resource allocation is informed across that entire system. However, the purpose of care at the EoL is more complex, encompassing diverse and patient centred objectives which the authors have interpreted as enabling the patient to experience a good death. Abstract: view source »

Patient-provider care goal concordance: Implications for palliative care decisions

PSYCHOLOGY & HEALTH | Online – 2 March 2019 – Goal-concordant care is an important feature of high quality medical treatment. Patients' care goals may focus on curative and/or palliative outcomes. Patients rarely communicate their care goals, and providers' predictions of patient goals are often inaccurate, corresponding most closely to their own treatment goals. This projection of own goals onto patients introduces the potential for bias, leading to goal-discordant care. The authors examined goal discordance using data from a U.S. sample of healthcare providers... Providers reported their perceptions of their patients' care goals (curative relative to palliative), their own care goals if they were to become ill, and their willingness to deliver palliative care (PC). For 28% of providers, their own care goals differed from those of their patients. Providers were more likely to prioritise PC – relative to curative – in their own goals than in their predictions about patients' goals. Providers were more willing to deliver PC when their own goals prioritised more palliative relative to curative care, but their perceptions of patient goals were unassociated with willingness to provide it. Efforts to improve goal communication and reduce projection biases among providers may facilitate goal-concordant care. Abstract: view source »

MW 607: Withholding and withdrawing life-sustaining treatment: Ethically equivalent?

Download the complete issue (PDF 600 KB)

To embark on such a campaign of changing attitudes, we need to be convinced that the ethical analysis is correct. Is it? In this article, the author takes a closer look at the moral relation between withholding and withdrawing. His conclusion is that withholding and withdrawing are not in general ethically equivalent. Thus, medical guidelines should be rewritten, and rather than being "educated" away from their sound judgments, medical professionals and patients should have nuanced medico-ethical discussions regarding withholding and withdrawing treatment. Abstract: view source »

The limits of "life-limiting"

JOURNAL OF PAIN & SYMPTOM MANAGEMENT | Online – 20 March 2019 – The field of hospice and palliative medicine has struggled to define the conditions which are appropriate for palliative care (PC). "Life-threatening" appropriately encompasses lethal conditions and helpfully incorporates the concept of probability, which is a necessary variable in any risk calculation. Yet it leaves one important group of patients unaccounted for: those whose primary need for PC is not expected abbreviation of life but rather the quality of that life. In an attempt to include these patients, the term "life-limiting" has come to be used more frequently. While attractive in its breadth – and at first glance appearing to be a less threatening way to introduce PC – the term is inherently flawed. It denotes a certain outcome, without any consideration of the likelihood of that outcome. Rather than "softening the blow" of introducing PC, the term seems to condemn a patient to the very outcome that PC is tasked to ameliorate, namely, the limitation of life. As such, it may provide a distorted view of what PC is, especially in pediatrics where the term is used with disproportionate frequency. The inherent misplaced certainty of "life-limiting" and the self-defeating message it sends to patients should be acknowledged. Abstract (inc. link to references): view source »

Publishing Matters

Making and measuring an impact in a digital world: The role of social media and the medical journal

JOURNAL OF THE AMERICAN GERIATRICS SOCIETY (JAGS) | Online – 15 March 2019 – In 1953, JAGS published its inaugural issue to fill a void in journals publishing on issues of aging. That same year, life science and biomedical researchers published 49,645 English‐language articles now referenced in PubMed. Over the intervening years, the number of articles published and referenced in PubMed has grown dramatically, with over 1.2 million referenced in 2018 alone. For any article to have a significant impact and not be lost in the cacophony of academic publications, traditional ways of disseminating the findings of research articles need to evolve. Social media platforms, such as Twitter and Facebook, provide new ways for medical journals and researchers to disseminate the findings of published articles to a broader audience than the usual journal‐subscriber base. They also are shifting the ways audiences act upon those findings. A 2015 report released from the Congressional Management Foundation, for example, found that as few as 30 social media posts on an issue would force Congressional staffers to "pay attention" to the concern, with 70% of staffers also noting that platforms like Twitter and Facebook made legislators "more accountable" to their constituents. JAGS began promoting articles via multiple online platforms in 2016 through a targeted social media strategy. In addition to Facebook, Twitter, and LinkedIn posts from the journal accounts, JAGS collaborates with a geriatrics and palliative care podcast and has had articles featured in an online geriatrics journal club. Full text: view source »

MW 606: How to talk about attitudes toward the end of life: A qualitative study

Download the complete issue (PDF 500 KB)

This study aimed to get insights into specific requirements and conditions for communication about the EoL in various EoL care settings. Having EoL discussions primarily depended on a pleasant atmosphere, trusting bonds between conversation partners, and professional attitudes of staff members. Nursing home staff felt obligated to initiate conversations, but some reported insecurities doing so. Starting "early," including relatives, and having continuous discussions seemed beneficial for EoL conversations. Implementing conversations into existing care structures and using low-threshold impulses to start conversations were helpful. Individualized approaches should be preferred. Each staff member can be a partner in detailed conversations about EoL attitudes, but some felt unprepared doing so. Further skill training concerning EoL discussions is needed. Communication might be facilitated by open-format tools using low-threshold impulses when conditions of the care setting are considered. Abstract: view source »

Let's talk with children about life-threatening diseases

THE LANCET, 2019;393(10176):1072. One of the hardest things to do for any paediatrician is to talk with children or adolescents who have a potentially fatal illness about their diagnosis, treatment, and prognosis. There are many general guidelines and principles about communication with children. For example, the U.K.'s General Medical Council states that "you should provide information that is easy to understand and appropriate to their age and maturity." However, there is little evidence-based practical guidance grounded in an understanding of the developmental stage of a child and the need for, and effect of, information about life-threatening conditions. Even less evidence is available on how best to communicate with children when their parents have a life-threatening disease. Two articles in this week's issue of The Lancet review the literature and provide communication principles and examples based on an integration of the available research and the authors' own clinical and academic perspective. Full text: view source »

1. 'Communication with children and adolescents about the diagnosis of their own life-threatening condition.' Summary (w. list of references): view source »

2. 'Communication with children and adolescents about the diagnosis of a life-threatening condition in their parent.' Summary (w. list of references): view source »

"So isolation comes in, discrimination and you find many people dying quietly without any family support": Accessing palliative care for key populations – an in-depth qualitative study

PALLIATIVE MEDICINE | Online – 12 March 2019 – Ensuring palliative care (PC) for all under a new global health policy must include key populations, that is, lesbian, gay, bisexual, transgender and intersex people, and sex workers. Accessibility and quality of care have not been investigated in lower and middle-income countries where civil rights are the weakest. Sixty key population adults and 12 healthcare providers and representatives of PC and key population support organisations were interviewed in four sites (Harare, Bulawayo, Mutare and Masvingo/Beitbridge). Participants described unmet needs and barriers to accessing even basic elements of PC. Discrimination by healthcare providers was common, exacerbated by the politico-legal-economic environment. Two dominant themes emerged: 1) Minimal understanding of and negligible access to PC significantly increased the risk of painful, undignified deaths; and 2) Discriminatory beliefs and practices from healthcare providers, family members and the community negatively affected those living with life-limiting illness, and their wishes at the end of life. Enacted stigma from healthcare providers was a potent obstacle to quality care. Discrimination from healthcare providers and lack of referrals to PC services increase the risk of morbidity, mortality and transmission of infectious diseases. Untreated conditions, exclusion from services, and minimal family and social support create unnecessary suffering. Public health programmes addressing other sexually taboo subjects may provide guidance. Full text: view source »

MW 605: Helping the demand find the supply: Messaging the value of specialty palliative care directly to those with serious illnesses

Download the complete issue (PDF 650 KB)

Having eclipsed its first decade as a recognized specialty, and despite remarkable growth in access to services, the majority of patients eligible for services still do not receive timely access to PC. This gap highlights the need to explore whether any shifts in strategy will help more patients receive the palliative services they need. Abstract: (inc. link to references): view source »

Do mention the D word

MEDSCAPE | Online – 4 March 2019 – Doctors sometimes find it hard to talk to their patients about death. There are many reasons why it may be a struggle, not least because it can be a difficult and sensitive conversation to have. A recent report by the Royal College of Physicians suggested that doctors need to improve their conversations with patients with terminal illnesses or chronic conditions, to handle them in a more timely way and with more compassion and confidence.1 So why is it such a difficult conversation? Doctors may not be comfortable dealing with the reaction of the patient and their families. People can have a myriad of responses; from shock and denial to feeling offended or being utterly bereft. It can be challenging for a doctor to broach the subject, especially if they don't have a long-term doctor-patient relationship and are unaware of the specifics of the situation. Some patients and their families may regard the conversation as an indication the medical profession is giving up on them. Cultural differences can also be important with some nationalities, religions or ethnic groups being less comfortable with the concept of limiting treatment, stopping treatment or moving towards palliative care. Full text: view source »

1. 'Talking about dying: How to begin honest conversations about what lies ahead,' Royal College of Physicians, October 2018. Down- load/view at: view source »

The deteriorating patient representative on a palliative care quality committee: Ethical and practical considerations

PALLIATIVE & SUPPORTIVE CARE | Online – 6 March 2019 – This case study describes the involvement of a patient representative on a palliative care (PC) committee and outlines some of the issues that arose as her health deteriorated. A summary of the increasing involvement of patient representation within health care governance is provided, and some of the challenges raised by the case, many of which may be relatively unique to PC, are discussed. It is hoped that presentation of this fairly novel scenario provides other PC providers with the opportunity to consider their own processes and practices around managing a similar situation should it occur in their healthcare setting. Abstract: view source »

MW 604: The ethics of prioritizing access to palliative care: A qualitative study

Download the complete issue (PDF 550 KB)

Four themes emerged: 1) Clinicians understood the tension between maintaining service quality with the delivery of a compromised service that sought to respond to demand; 2) They were aware of the influences of relationships and responsibilities upon patient waiting list prioritization, and 3) reported a hierarchy of suffering with certain types of clinical problems viewed as more urgent than others, for example, pain being more urgent than existential distress; and, 4) Clinicians noted a lack of transparency around waiting lists as they currently exist. This study revealed key ethical decision-making issues associated with prioritizing access to PC services. Making explicit the processes and influences upon decision-making provides greater transparency of healthcare utilization at the end of life. Abstract: view source »

Changing perceptions is more important than changing names

BRITISH MEDICAL JOURNAL | Online – 28 February 2019 – Nearly 30 years after the World Health Organization first defined "palliative care," we are no closer to agreeing what the term means. Palliative care (PC) has driven major improvements in the care of people with life limiting illnesses and fostered more open public discourse about death and dying. National and international policies advocate better access to PC for everyone who needs it. The Lancet Commission goes further, describing it as a basic human right in the face of unrelieved suffering affecting millions worldwide. The 2018 Astana Declaration endorses PC as an essential component of primary healthcare worldwide: "Promotive, preventive, curative, rehabilitative services, and PC must be accessible to all." Yet, stigmatisation of the term among patients, professionals, and the public continues to counter positive messages about its benefits. Introductory paragraph: view source »

Patients' views on care and their association with outcomes in palliative care

PALLIATIVE MEDICINE | Online – 1 March 2019 – In palliative care (PC), we often rely on the accounts of bereaved relatives to report the quality of end-of-life care, and there are no validated patient-reported measures of the experience of care. The authors report therefore on a new questionnaire, Views on Care, to address this gap. It consists of four questions…selected/refined from St Christopher's Index of Patient Priorities (SKIPP),1 which address patients' evaluation of: 1) Change in their main concerns,; 2) Benefit from palliative services; 3) Previous and 4) Current quality of life... First, it is important to note that most participants reported that things were getting better and that PC was providing benefit. This was found across different settings and palliative Phases of Illness. Second, patients reported positive change more often when physical (rather than overall, psychological or communication/practical) outcomes had improved. Third, the authors found that reports of positive impact of the PC teams was associated with improvement in communication/practical outcomes, but not with improvement in outcomes overall. This is an important finding as it demonstrates how much communication and practical matters influence the experience of care. It also illustrates that both outcomes and experience need to be measured if quality of care is to be properly understood. A limitation of the authors findings is that – in this study – about one-third of patients did not complete the second timepoint, often due to a change in setting and loss to follow-up but sometimes because of deterioration in health. Full text: view source »

MW 603: Serious choices: A systematic environmental scan of decision aids and their use for seriously ill people near death

Download the complete issue (PDF 600 KB)

Only two focused on more general care pathways (i.e., life-sustaining intervention, palliative care, and hospice). Twenty-four of 27 decision aids presented options in a balanced way; 23 identified funding sources, and 19 of 27 reported their publication date. Just 11 used plain language. A minority, 11 of 27, listed evidence sources, five documented rigorous evidence-synthesis methods, six disclosed competing interests, and three offered update policies. Preliminary results suggest that few health systems use decision aids in routine patient care. Although many decision aids exist for life-sustaining treatment decisions during serious illness, the tools are deficient in some key quality areas. Abstract: view source »

Palliative care and public health: An asymmetrical relationship?

PALLIATIVE CARE: RESEARCH & TREATMENT | Online – 20 February 2019 – Interest in the potential for public health (PH) and palliative care (PC) to work together is now widely established. Based on a mapping review of existing literature, the authors describe for the first time the ways in which PH has entered PC policy and practice and how this has been specifically articulated. They then go on to pursue analytical and critical lines of enquiry that are largely absent from the existing literature. The authors do this in three ways: 1) By considering why the link between PH and PC has become so ubiquitous within PC policy; 2) By establishing how this has been constructed; and, 3) By exploring PH as a "reference discipline" from which its "secondary deployment" can become embedded inside another disciplinary field. From this, the authors develop a range of critical perspectives on the relationship between PH and PC by scrutinising its claims of utility and effectiveness and questioning the strength of the interdisciplinary interaction between the two disciplines. They see their relationship in a "cross disciplinary" context which is still largely symbolic and tactical in nature. The authors conclude by considering the significance of these insights for policy and practice, with two possible scenarios. If the use of PH is essentially figurative and its resources are not unique, the particular and exclusive use of the term becomes insignificant. Progressive and effective policy and practice is possible, independent of any explicit PH label. If however PH is considered to have intrinsic and definable worth, the authors suggest that this currently asymmetrical association needs to be significantly developed with much higher levels of theoretical, practical and critical engagement between the two disciplines. Such work would result in more reflective and robust policy and practice. Full text: view source »

MW 602: Breaking silence: A survey of barriers to goals-of-care discussions from the perspective of oncology practitioners

Download the complete issue (PDF 800 KB)

Making time for these crucial conversations and planning to have them throughout the course of illness is imperative. GoC discussions should be initiated by physicians and nurses who have received focused training in this regard, and the discussion would be made richer with the help of skilled allied health professionals. Full text: view source »

A practical approach to assessing and mitigating loneliness and isolation in older adults

JOURNAL OF THE AMERICAN GERIATRIC SOCIETY | Online – 14 February 2019 – Despite the adverse impacts of loneliness and social isolation on quality of life, and their strong association with health outcomes, the evaluation of loneliness and isolation have not been integrated into medical care. The risks for loneliness may be of particular concern to persons with serious illness as patients and caregivers cope with the experience of loss, loss of independence, and increasing care needs. To date, there has been no uniform way of evaluating and documenting loneliness and social isolation as a part of a review of a patient's social determinants of health. This article provides a framework for healthcare systems, providers, and community members working with older adults to 1) understand loneliness, isolation, and its counterpart social connection; 2) describe the different ways loneliness affects health; and, 3) create a framework for asking about and documenting these experiences. Finally, because the lack of studies assessing whether targeting loneliness can improve health outcomes is a major gap, we provide guidance on the future of interventions. Abstract: view source »

Has the National Health Service Long Term Plan forgotten we are all going to die?

THE LANCET | Online – 2 February 2019 – 'NHS bosses in England say a new 10-year plan could save up to 500,000 lives,' reported the BBC when the NHS Long Term Plan was launched in January 2019.1,2 The plan presents a new service model for the 21st century and makes the case for improvements in prevention, treatment, outcomes, care quality, and reducing health inequalities among other priorities. But you have to search hard to find any mention of end-of-life (EoL) care. Indeed, it's virtually hidden: care at the EoL appears in one short paragraph in a section headed with the upbeat "People will get more control over their own health and more personalised care when they need it." And the first benefit of improving and personalising EoL care is "a reduction in avoidable emergency admissions," clarifying that dying is inconvenient for the efficiency of hospitals. Abstract (w. list of references): view source »

MW 601: The ageing and deinstitutionalisation of death: Evidence from England and Wales

Download the complete issue (PDF 600 KB)

To explore recent and likely future trends in age and place of death, mortality statistics from 2006 to 2013 were analysed and projected to 2050 using age- and gender-specific rates. Results confirmed recent increasing age at death and indicated a trend for increasing proportions of older people to die at home. Projections indicated large increases in home-based deaths, particularly for men aged 65 and over. Consistent with people's wishes, there may be a partial return to the view that dying at home is a normal experience. Resource allocations are likely to need to shift to support people dying at home and their formal and informal carers. Abstract: view source »

Emergency department-based palliative interventions: A novel approach to palliative care in the emergency department

JOURNAL OF PALLIATIVE MEDICINE | Online – 5 January 2019 – Patients with palliative care (PC) needs were identified using an abbreviated 5-question version of the screen for palliative and end-of-life care needs in the emergency department (ED) – 5-SPEED. These patients were then automatically flagged for an ED-based palliative intervention (EPI) as determined by their identified need. The primary outcome was the prevalence of PC needs among patients with active cancer. Secondary outcomes were the rate of EPI services successfully delivered to ED patients with unmet PC needs, ED length of stay (LoS), and repeat ED visits within the next 10 days. Of the 1,278 patients with active cancer, 817 (63.9%) completed the 5-SPEED screen. Of the patients who completed the screen, 422 patients (51.7%) had one or more unmet PC needs and 167 (39.6%) received an EPI. There were no differences in ED LOS or 10-day repeat ED visit rates between patients who did or did not receive an EPI. This ED-based intervention successfully screened for palliative needs in cancer patients and improved access to specific palliative services without increasing ED LOS. Abstract: view source »

Representations of palliative care, euthanasia and assisted dying within advocacy declarations

MORTALITY | Online – 4 February 2019 – It is well known that there are disagreements between the proponents of palliative care (PC) and of euthanasia or assisted dying, often with little common ground, shaping the end-of-life discourse internationally. Advocacy documents or "declarations" constitute a significant feature of this discourse. The aim of this study was to explore the content of such declarations and to focus on what they can tell us about PC and assisted dying and their dispositions towards one another. 104 declarations were identified and included in the study, covering the period 1974 to 2017. The authors classified them based on their primary purpose: those with the goal of advocating for PC services, education and research were grouped under "palliative care declarations"; those with the primary objective of advocating for or against euthanasia/assisted dying were classified as "euthanasia/assisted dying declarations." Their analysis revealed the content of the declarations could be broadly categorised into three dimensions: framing, claiming and demanding. The authors demonstrate that these declarations reveal a struggle over the construction of meanings relating to PC and assisted dying and constitute a valuable resource for the analysis of an unfolding debate. Full text: view source »

MW 600: Unpacking "the cloud": A framework for implementing public health approaches to palliative care

Download the complete issue (PDF 675 KB)

The sharing of resources, tools, and innovations among implementers of CCs is occurring globally. Although this can increase impact, it also generates complexity that can complicate robust evaluation. When initiating population health level projects, it is important to clearly define and organize concepts and processes that are proposed to influence the health outcomes. The Health Impact Change Model (HICM) was developed to unpack the complexities associated with the implementation and evaluation of a Canadian CC intervention. The HICM offers utility for citizens, leaders and decision-makers who are engaged in the implementation of population health level strategies or other social approaches to care, such as compassionate cities and age or dementia-friendly communities. The HICM's concepts can be adapted to address a community's healthcare context, needs, and goals for change. The authors share examples of how the model's major concepts have been applied in the development, evaluation and spread of a complex CC approach. Abstract: view source »

Cancer and opioids: Patient Experiences with Stigma (COPES)

JOURNAL OF PAIN & SYMPTOM MANAGEMENT | Online – 28 January 2019 – This study, to the authors' knowledge, provides the first evidence of opioid stigma and its consequences in cancer patients and offers potential targets for interventions aimed at reducing stigma and encouraging safe, effective opioid use. Participants were 125 adults undergoing active cancer treatment being seen at the Moffitt Supportive Care Medicine Clinic [headquartered in Tampa. Florida]. Patients were primarily women (65%) aged 45-64 years (49%), most commonly diagnosed with breast (23%) and hematologic (15%) cancer. Among patients who reported opioid use, the most common reason for use was pain relief (94%), followed by improved sleep (25%). A sub-set of patients reported using less (13%) or more (8%) opioid medication than advised. Opioid stigma was endorsed by 59/97 patients prescribed opioids (61%), including fear of addiction (36%), difficulty filling prescriptions (22%), and awkwardness communicating with providers (15%). Stigma-related behaviors were endorsed by 28 (29%) of respondents prescribed opioids, with "taking less opioid medication than needed" as the most commonly endorsed behavior (20%). Abstract: view source »

The clinical evaluation of the wish to hasten death is not upsetting for advanced cancer patients: A cross-sectional study

PALLIATIVE MEDICINE | Online – 28 January 2019 – An important concern of healthcare professionals when exploring the wish to hasten death with patients is the risk of causing them some type of distress. The authors assessed 193 advanced cancer patients admitted to an oncology ward for the wish to hasten death using a semi-structured clinical interview. After the assessment the participants were surveyed to determine whether they found the interview upsetting and, if so to what extent, and also their opinion regarding the assessment's importance. The wish to hasten death was reported by 46 (23.8%) patients. The majority (94.8%) did not find talking about the wish to hasten death to be upsetting, regardless of whether they presented it or not. The majority (79.3%) considered that it was either quite or extremely important for the clinician to proactively assess the wish to hasten death and discuss this topic, regardless of whether they experienced it. These findings suggest that healthcare professionals can explore the wish to hasten death proactively in routine clinical practice without fear of upsetting patients. Abstract: view source »

MW 599: Public policy: An analgesia for opioid diversion

Download the complete issue (PDF 500 KB)

This has downplayed the importance of medically treating pain, especially in the context of palliative care. This article recommends the intelligent use of public policy to alleviate the opioid diversion problem while acknowledging the importance of appropriate pain management. Concurrently, this article recommends providing continuous education and support for physicians, dispensers, and the like and adoption of soft law approaches by legislators and enforcement bodies to prevent relentless clamping down on opioid abusers. In conclusion, appropriate policies and guidelines are necessary to support the entire health care body in executing a coordinated approach and exercising vigilance to better manage the opioid diversion problem. Abstract: view source »

Can Death Cafés resuscitate morale in hospitals?

MEDICAL HUMANITIES | Online – 19 January 2019 – Death Cafés are non-profit social franchises that arise spontaneously in communities to serve as informal forums for discussing death. There is a great need within the medical community for the kind of conversation that Death Cafés foster: open, unstructured, spontaneous, genuine and interdisciplinary dialogue. Burnout in healthcare, with symptoms of exhaustion, depersonalisation and decreased efficacy, is a global crisis, with alarming estimates suggesting one in three practicing physicians experience burnout. While open-forum community-based Death Cafés exist widely, there appears to be no evidence in the literature to suggest that healthcare settings have adapted this model for fostering debriefings among hospital employees. The authors introduce the concept of hospital-based Death Cafés as distinct from community-based Death Cafés. From their experience, hospital-based Death Cafés are easy to implement, inexpensive, require little planning and yet offer tremendous reward to participants. Should the phenomenon of Death Cafés take off in hospitals as it has in communities internationally, the authors propose that this intervention be studied for its effect on healthcare worker burnout. Abstract: view source »

Early palliative care: Pro, but please be precise!

ONCOLOGY: RESEARCH & TREATMENT, 2019;42:11-18. Many patients suffer from distressing symptoms or problems in early phases of such illness. Therefore, it is not a question of "if" palliative care (PC) should be integrated early into oncology, but "how." General PC is defined as an approach that should be delivered by healthcare professionals regardless of their discipline. This is often referred to as "general" or "primary" PC. For this, routine symptom assessment, expertise concerning basic symptom management, and communication skills are basic requirements. Communication skills include the willingness to engage in discussions concerning patients' fears, worries and end-of-life issues without the fear of destroying hope. Specialist PC is provided by specialist teams regardless of the patients' disease, be it cancer or non-cancer. Such teams should be integrated in the care of PC patients depending on the availability of these services and the patients' needs. Key messages: "Early PC" must not be used synonymously with "early specialist PC" because much of the PC is delivered as basic oncology PC. For the integration of specialist PC, the identification of triggers is warranted in different institutions to facilitate a meaningful and effective cooperation. Such cooperations should be based on patients' needs, but must also account for questions of availability and resources. Abstract (w. list of references): view source »

MW 598: "This condition isn't going to get any better so I can't see why we're prolonging it": Risks and benefits of using empirical research to inform normative decisions concerning end-of-life care

Download the complete issue (PDF 625 KB)

However, moral questions, such as the right balance between preserving life and maximising quality of life, are an inherent part of the care-planning process. The authors take nutritional support as an example of one area of decision-making that needs to be addressed during care planning for people with progressive neurological disease. It describes research into the way in which the values of practitioners, members of the public and people with lived experience of progressive neurological disease may influence their decision-making about the right approach to maintaining nutritional intake during end-of-life care; and, discusses some of the challenges of incorporating such findings into normative frameworks. Abstract: view source »

Top ten tips palliative care clinicians should know about medical cannabis

JOURNAL OF PALLIATIVE MEDICINE | Online – 14 January 2019 – The use of medical cannabis is increasing significantly throughout the U.S. in spite of limited and sometimes contradictory data about its effectiveness. Palliative care providers are being asked to consider cannabis as part of symptom-directed treatment regimens although many providers have limited experience recommending medical cannabis and were trained before it was commercially available. This article seeks to dispel myths about medical cannabis and provides a balanced view of the benefits and burdens of this therapeutic option, providing evidence where it exists and offering practicing clinicians guidance on conditions in which medical cannabis is likely to be helpful or burdensome. Abstract: view source »

Reducing the role of the courts in treatment withdrawal

MEDICAL LAW REVIEW | Online – 15 January 2019 – In A National Health Service Trust and others v Y and another, the Supreme Court [in the U.K.] concludes that a court declaration is not a mandatory requirement before clinically assisted nutrition and hydration (CANH) is withdrawn from a person with prolonged disorder of consciousness (PDOC). The decision recognises the practical challenges for the courts, hospitals, and medical staff of involving over-worked courts in perceived non-controversial clinical judgments. It also recognises that judicial involvement can cause unnecessary anguish for the family and may merely delay the inevitable. It is an understandable decision and in most cases it is likely to be unproblematic. However, the judgment does not adequately recognise the vital role played by a court application in ensuring that the voice of the incapacitated patient is heard and explicitly considered by a neutral person. The withdrawal of CANH from persons in PDOC raises unique ethical concerns because it leads to the death of a vulnerable person not able to express his or her own opinion on whether life should now cease and it does so by withdrawing the most basic of medical treatment. It brings to an end the state's positive steps to preserve the life of the patient and thus requires very careful scrutiny in order to ensure compatibility with Article 2. It is regrettable, therefore, that the Supreme Court in Y has removed a valuable safeguard for both the right to life and the autonomy of incapacitated patients. Full text: view source »

MW 597: New definition of palliative care

Download the complete issue (PDF 750 KB)

A 2002 definition by the World Health Organization (WHO) limits PC to a service that can be offered to relieve problems associated with life-threatening illnesses.1 Following the recommendation of The Lancet Commission on PC and pain relief,2 and as an organization in official relations with the WHO, the Association designed, developed, and implemented a project to revise and adopt a new PC definition. The objective was to find consensus on a definition that focuses on the relief of suffering, and is also timely and applicable to all patients regardless of diagnosis, prognosis, geographic location, point of care, or income level. Download/view at: view source »

1. 'Definition of Palliative Care,' WHO, 2002. Download/view at: view source »

2. 'Alleviating the access abyss in palliative care and pain relief: An imperative of universal health coverage,' The Lancet, October 2017. [Noted in 16 October 2017 issue of Media Watch (#534, p.14)] Full text: view source »

Spiritual uncertainty among hospice providers – "there were tensions"

JOURNAL OF HOSPICE & PALLIATIVE NURSING, 2019;21(1):90-95. How providers of end-of-life (EoL) care perceive spirituality both within themselves and for others can directly impact their ability to provide spiritual care to patients and families. Uncertainty about spirituality can contribute to the awkwardness of spiritual care. Spiritual uncertainty includes the questions, worries, and doubts people have about the meaning, beliefs, connections, self-transcendence, and value that comprise spirituality. This article reports qualitative findings from a mixed-methods study that sought to understand spiritual uncertainty among hospice providers. Data were collected from 28 hospice team members (nurses, physicians, social workers, and expressive therapist) using focus groups, reflective journals, and one-on-one interviews. An overarching theme emerged that described the tensions perceived by providers caring for hospice patients. Those tensions were further categorized as being interpersonal, intrapersonal, and transpersonal in nature. The identification of tension as a source of strain for providers delivering spiritual care is necessary to the development of future interventions that can assist providers and patients navigating EoL spirituality. Abstract: view source »

Understanding the barriers to introducing early palliative care for patients with advanced cancer: A qualitative study

JOURNAL OF PALLIATIVE MEDICINE | Online – 11 January 2019 – The findings of this study suggest that referral to palliative care (PC) specialists shortly after the diagnosis of advanced cancer increases the terminological barriers, induces avoidance patterns, and makes early disclosure of poor prognosis harder for oncologists. This situation is attributable to the widespread idea that PC means terminal care. In addition, the fact that the "early palliative care" (EPC) concept is poorly understood increases the confusion between EPC and supportive care. Defining the EPC concept more clearly and explaining to health professionals and patients what EPC consists of and what role it is intended to play, and the potential benefits of PC services could help to overcome the wording barriers rooted in the traditional picture of PC. Abstract: view source »

MW 596: Caring for dying patients: Visual narratives from the intensive care unit

Download the complete issue (PDF 550 KB)

Creating these visual images helped me to reflect and better understand how our daily medical interventions truly impact patient care. For viewers, I hope these images facilitate more mindful ways to care for patients and their families as they face illness and death. Each drawing represents a composite of patients I have encountered, and I used donated cadavers from the New York University Anatomy Lab to help accurately depict the anatomy in my illustrations. Full (illustrated) text: view source »

What does the word "treatable" mean? Implications for communication and decision-making in critical illness

CRITICAL CARE MEDICINE | Online – 21 December 2018 – The authors identified two distinct concepts that study participants used to interpret the word "treatable": 1) A "good news" concept, in which the word "treatable" conveys a positive message about a patient's future, thereby inspiring hope and encouraging further treatment; and, 2) An "action-oriented" concept, in which the word "treatable" conveys that physicians have an action or intervention available, but does not necessarily imply an improved prognosis or quality of life. The overwhelming majority of non-physicians adopted the "good news" concept, whereas physicians almost exclusively adopted the "action-oriented" concept. For some non-physicians, the word "treatable" conveyed a positive message about prognosis and/or further treatment, even when this contradicted previously stated negative information. Physician use of the word "treatable" may lead patients or surrogates to derive unwarranted good news and false encouragement to pursue treatment, even when physicians have explicitly stated information to the contrary. Further work is needed to determine the extent to which the word "treatable" and its cognates contribute to widespread decision-making and communication challenges in critical care, including discordance about prognosis, misconceptions that palliative treatments are curative, and disputes about potentially inappropriate or futile treatment. Abstract: view source »

Publishing Matters

Predatory open-access publishing in palliative and supportive care

JOURNAL OF PAIN & SYMPTOM MANAGEMENT | Online – 27 December 2018 – Predatory publishing is commonly defined as an exploitative, fraudulent, open-access model that applies charges to authors without providing proper editorial services, characteristic of legitimate journals. This phenomenon is universally considered as one of the most serious threats to scientific community. To enhance awareness among scholars and clinicians, predatory publishing has been surveyed in several biomedical fields, such as neuroscience, orthopedics, rehabilitation, and anesthesiology. Abstract (inc. link to references): view source »

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

Page Last Modified: Sun Sep 15 2019