Global Palliative Care News Archive


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

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

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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

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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

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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?

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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?

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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 »

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