Global Palliative Care News Archive


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Barry R. Ashpole, Guelph, Ontario, CANADA
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MW 560: Increasing information dissemination in cancer communication: Effects of using "palliative," "supportive," or "hospice" care terminology

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This experimental study was conducted at a major U.S. hospital serving a diverse population. Patients visiting a cancer clinic encountered opportunities to learn more about cancer care. They were offered health materials that were described as reporting on "palliative," "supportive," or "hospice" care and the primary outcome was whether a patient decided to select or reject each. As a secondary outcome, the study measured the patient's level of interest in receiving each. In this study, the terminology used had a large effect and, compared with alternatives, the information labeled as being about "supportive" care was significantly more likely to be selected. If these effects are supported by additional research, there may be low-cost, highly feasible changes in language choice that increase the dissemination of relevant health information. Abstract: view source »

Medical assistance in dying: A paediatric perspective

PAEDIATRICS & CHILD HEALTH, 2018;23(2): 125-130.
In June 2016, [Canada's] Bill C-14 was enacted, allowing medical assistance in dying (MAiD) for an eligible adult whose death is "reasonably foreseeable." An independent report on the status of "mature minors" (who are currently excluded under federal legislation), with focus on their potential eligibility for MAiD, was required by the 2016 Act and is expected to be presented to Parliament by December 2018. Ensuring that newborns, children and youth receive the highest possible standard of care as they are dying is a privilege and a responsibility for physicians and allied professionals. Bringing a thoughtful, respectful and personal approach to every end-of-life situation is an essential and evolving duty of care, and the process should meet each patient's (and family's) unique social, cultural and spiritual needs. This statement describes the current Canadian legal and medical context of MAiD and articulates a paediatric perspective that has emerged from – and been informed by – the broad, structured consultation process unfolding in Canada and elsewhere. Although "mature minors" are the only youth currently mandated for further legislative consideration in Canada, the need to examine requests for and attitudes around MAiD for minors of all ages remains compelling for two main reasons: Canadian health care professionals are increasingly being approached by the parents of "never-competent" infants and children, including those too young to make a reasoned decision, and by youth themselves, to discuss MAiD related issues; and, the discussion of MAiD policy in Canada has been framed as much by the issue and context of suffering as by considerations of autonomy. While current legislation clearly prohibits MAiD for incapable persons at the request of any other person, it is possible that parents may request MAiD on behalf of their dying child. Full text: view source »

Extract from the Paediatrics & Child Health article: The role of palliative care

Palliative care (PC) and medical assistance in dying (MAiD) provide philosophically and clinically distinct – though interconnected – medical services. Some parents and clinicians fear PC as being focused on death rather than on life, and education around PC often involves explaining its essential role in optimizing quality of life for as long as possible. If PC physicians were also to engage in the MAiD process, some practitioners believe that fear and apprehension might intensify. At the same time, however, PC practitioners have acquired invaluable wisdom and experience caring for individuals and families living with advanced illness. Requests for MAiD may still arise in the context of excellent PC, and the expertise and experience of PC specialists must remain available to families considering MAiD. Furthermore, paediatric PC physicians may also wish to participate in MAiD, if and when legislative changes extend MAiD to some paediatric patients. Irrespective of personal beliefs, access to high quality PC must be seamless for those in need, whatever end-of-life options are being contemplated.

The involvement of cancer patients in the four stages of decision-making preceding continuous sedation until death: A qualitative study

PALLIATIVE MEDICINE | Online – 18 April 2018 – Professional guidelines emphasize that the decision to initiate continuous sedation should be made in accordance with the wishes of the dying person and be preceded by their consent. Interviews were conducted with 26 physicians, 30 nurses and 24 relatives caring for 24 patients with cancer who received continuous sedation until death in Belgium, the U.K. and The Netherlands. The authors distinguished four stages of decision-making: initiation, information exchange, deliberation and the decision to start continuous sedation until death. There was wide variation in the role the patient had in the decision-making process. At one end of the spectrum (mostly in the U.K.), the physician discussed the possible use of sedation with the patient, but took the decision themselves. At the other end (mostly in Belgium and The Netherlands), the patient initiated the conversation and the physician's role was largely limited to evaluating if and when the medical criteria were met. The authors recommend building into clinical practice regular opportunities to discuss the goals and preferences of the person who is dying for their future medical treatment and care. Abstract: view source »

MW 559: Sharing is caring: Minimizing the disruption with palliative care

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This consequently warrants the underlying importance of palliative care (PC) and integrating it into the patients' health care plans earlier. There is increasing evidence from recent trials that supported implementing national policies regarding the early integration of PC and its role in improving the quality of life, increasing survival, and supporting patients' and caregivers' values when making decisions about their health care while possibly minimizing the burden of illness. Full text: view source » (90 KB)

Raise the bar, not the threshold value: Meeting patient preferences for palliative and end-of-life care

PHARMACOECONOMICS | Online – Accessed 8 April 2018 – Despite increasing interest in economic evaluation of palliative and end-of-life care (P&EoLC), research on patients' preferences and values to robustly inform such analysis in this setting is relatively scarce. In a special issue of Palliative Medicine on the economics of P&EoLC just one article focused on this controversial topic.1 In large part this may be due to the complexities of palliative care (PC), which aims to improve "the quality of life of patients and families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual." Clearly, PC is multidimensional and people value domains above and beyond health status. There is utility from the dying process; people have preferences for their place of care and place of death along the dying trajectory and derive benefit from preparing themselves and others for their impending death. Further, reducing families' and carers' distress and improving their well-being are integral aspects of care. People also value aspects such as not being a burden on family and friends, and receiving high-quality healthcare as much as, or even more than, improvements in health status or extension of life when receiving PC. Yet, clinicians and decision makers don't always accord the same value to these patient preferences. Full text: view source »

1. 'An economic view on the current state of the economics of palliative and end-of-life care,' Palliative Medicine, 2017;31(4):291-292. [Noted in the 20 March 2017 issue of Media Watch (#504, p.13] Full text: view source »

MW 558: Palliative care in medical practice: Medical students' expectations

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At both the beginning and end of their training, a significant proportion of students expect PC to be less satisfying than other care (19.3% first year, 16% final year). Students expecting PC to be less satisfying were more likely to be men, and their attitudes suggest that while they understand the importance of providing PC they are concerned about the potential impact of this kind of work on them personally. Medical student education needs to address why PC is important and how to deliver it effectively, and the strategies for dealing positively with the impact of this work on future clinicians. Abstract: view source »

Perhaps quality of life should not be used as a trigger for discussing resuscitation and advance care plans

EMERGENCY MEDICINE AUSTRALASIA | Online – 2 April 2018 – As a subjective measure, quality of life (QoL) should not be used as a trigger for discussing resuscitation, goals of care or advanced care plans. Limitations and challenges in measurement and assessment of QoL have been recognised. It is a fluid construct and subject to changes and response shifts. Surrogate QoL estimations may misrepresent individual worth and self-perceived QoL. Disagreement over QoL statements may cause harm. Abstract: view source »

Ten tips nephrologists wish the palliative care team knew about caring for patients with kidney disease

JOURNAL OF PALLIATIVE MEDICINE | Online – 1 April 2018 – Many patients with chronic kidney disease (CKD) and end-stage renal disease have unmet palliative care (PC) needs. Physical and emotional symptoms are common. Some, like uremia and fluid overload, improve with dialysis, but the increasing age of patients initiating renal replacement therapy leaves many untreatable comorbidities like dementia and frailty to negatively impact quality of life. Written by nephrologists and PC clinicians, this article will help PC providers to have a richer understanding of kidney disease-related symptom burden, disease trajectory, prognosis, and barriers to hospice enrollment for patients with CKD and end-stage renal disease. Abstract: view source »

MW 557: Value-impregnated factual claims may undermine medical decision-making

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They suggest as a hypothesis that healthcare providers' decision making is sometimes affected by value-impregnated factual claims or assumptions. If such claims influence e.g., doctor-patient encounters, this will likely have a negative impact on the provision of correct information to patients and on patients' influence on decision making regarding their own care. The authors explore the idea that value-impregnated factual claims influence healthcare decisions through a series of medical examples. Full text: view source »

Nudge or grudge? Choice architecture and parental decision‐making

THE HASTINGS REPORT, 2018;48(2):33-39. Much has been written about the ethics of nudging competent adult patients. Less has been written about the ethics of nudging surrogates' decision‐making and how the ethical considerations and arguments in that context might differ. Even less has been written about nudging surrogate decision‐making in the context of pediatrics, despite fundamental differences that exist between the pediatric and adult contexts. Yet, as the field of behavioral economics matures and its insights become more established and well‐known, nudges will become more crafted, sophisticated, intentional, and targeted. Thus, the time is now for reflection and ethical analysis regarding the appropriateness of nudges in pediatrics. The authors argue that there is an even stronger ethical justification for nudging in parental decision‐making than with competent adult patients deciding for themselves. They give three main reasons in support of this: 1) Child patients do not have autonomy that can be violated (a concern with some nudges), and nudging need not violate parental decision‐making authority; 2) Nudging can help fulfill pediatric clinicians' obligations to ensure parental decisions are in the child's interests, particularly in contexts where there is high certainty that a recommended intervention is low risk and of high benefit; and, 3) Nudging can relieve parents' decisional burden regarding what is best for their child, particularly with decisions that have implications for public health. Abstract: view source »

Of special interest

Caring for the chronically ill in Bangladesh's Rohingya camps

BANGLADESH | IRIN Association (Formerly the UN's Integrated Regional Information Network) – 28 March 2018 – Along with the [Rohingya] refugees, medical workers flooded into Cox's Bazar [a town on the southeast coast of Bangladesh]. They treated traumatic injuries, raced to reverse severe malnutrition exacerbated by displacement and disease, and set up an emergency medical care system in the chaotic first weeks of the influx. But despite the scale of the response, healthcare advocates say thousands of people with incurable diseases are still ignored by a system that overlooks the needs of the dying or gravely ill. "I saw people were treating only acute patients and palliative care (PC) was being neglected," said Farzana Khan, a doctor who founded the Bangladesh-based Fasiuddin Khan Research Foundation, a private group that set up the programme that helps Sanjida and 200 other severely ill patients. Advocates of PC say it's the first programme to offer dedicated help for people with chronic or life-threatening illnesses during a humanitarian response. "There's absolutely no reason why PC can't be there as part of the health system," said Joan Marston, co-founder of PalCHASE (Palliative Care in Humanitarian Aid Situations & Emergencies Network), a U.K.-based organisation that advocates for such assistance to be included in responses to disasters and conflict. "It really is about the dignity of the individual. There's enough indignity within these humanitarian situations." There's no allotment for PC in the recently released $950-million Rohingya [international] response plan, which outlines the aid sector's priorities through the end of the year. But Marston said the scarcity of this kind of care during humanitarian emergencies reaches far beyond the current crisis in Bangladesh. view source »

MW 556: Evaluating palliative care resources available to the public using the Internet and social media

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Five main themes were generated from 266 YouTube video comments analyzed. The most common was emotionality, of which 91% were positive statements. Facebook and Twitter were mostly used by health-care professionals and not the public. PC resources are mostly positive and consistent with the current definition of PC. Major Internet search engines such as Google and YouTube provide valuable insight into information the public receives about PC. Future development of Internet resources on PC should consider including children and emphasizing PC for all life-limiting illnesses. Abstract: view source »

Ethical challenges for an understanding of suffering: Voluntary stopping of eating and drinking and the wish to hasten death in advanced patients

FRONTIERS IN PHARMACOLOGY | Online – 14 March 2018 – Some persons with advanced disease but no significant cognitive impairments consciously decide to stop taking food and fluids orally, even though they remain physically able to do so. The question is to what extent voluntarily stopping eating and drinking (VSED) may be considered an expression of a wish to hasten death, in the sense that the latter has been defined recently. The authors analyze the data reported in some studies in relation to primary care patients who died as a result of VSED and examine their results in light of the qualitative findings of patients that expressed a wish to die. In their view, VSED can be understood as a response to physical/psychological/spiritual suffering, as an expression of a loss of self, a desire to live but not in this way, a way of ending suffering, and as a kind of control over one's life. Thus, VSED is consistent with the wish to hasten death. Prior to interpreting this act as a deliberate expression of personal autonomy, it is important to explore all possible areas of suffering, including physical symptoms, psychological distress, existential suffering and social aspects. Failure to do so will mean that we run the risk of abandoning a fellow human being to his or her suffering. Abstract: view source »

The voice is as mighty as the pen: Integrating conversations into advance care planning

JOURNAL OF BIOETHICAL INQUIRY | Online – 17 March 2018 – Advance care planning (ACP) allows patients to articulate preferences for their medical treatment, lifestyle, and surrogate decision-makers in order to anticipate and mitigate their potential loss of decision-making capacity. Written advance directives are often emphasized in this regard. While these directives contain important information, there are several barriers to consider: veracity and accuracy of surrogate decision-makers in making choices consistent with the substituted judgement standard, state-to-state variability in regulations, literacy issues, lack of access to legal resources, lack of understanding of medical options, and cultural disparities. Given these issues, it is vital to increase the use of patient and healthcare provider conversations as an ACP tool and to increase integration of such discourse into ACP policy as adjuncts and complements to written advance directives. The authors reviews current legislation about written advance directives and dissects how documentation of spoken interactions might be integrated and considered. They discuss specific institutional policy changes required to facilitate implementation. The authors explore the ethical issues surrounding the increased usage and recognition of clinician-patient conversations in ACP. Abstract (inc. list of references): view source »

MW 555: Can the ethical best practice of shared decision-making lead to moral distress?

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This paper examines how the application of shared decision-making may contribute to the experience of moral distress for physicians and why such distress may go under-recognized. Appreciation of these dynamics may assist in cross-discipline sensitivity, enabling more constructive dialogue and collaboration. Abstract (w. list of references): view source »

Spiritual distress within inpatient settings: A scoping review of patient and family experiences

JOURNAL OF PAIN & SYMPTOM MANAGEMENT | Online – 13 March 2018 – Within the 37 articles meeting inclusion criteria, the authors identified six themes: 1) Conceptualizing spiritual distress (SD); 2) Diagnosis and prevalence; 3) Assessment instrument development; 4) Experiences; 5) Associated variables; and, 6) Barriers and facilitators to clinical support. The majority of studies focused on patients; two studies focused on family caregivers. The most common clinical settings were oncology and advanced disease. Terminology to describe SD varied amongst studies. The prevalence of at least moderate SD in patients was 10-63%. SD was experienced in relation to self and others. Associated variables included demographic, physical, cognitive and psychological factors. Barriers and facilitators were described. Patient and family experiences of SD in the inpatient setting are multifaceted. Important gaps in the literature include a narrow spectrum of populations, limited consideration of family caregivers, and inconsistent terminology. Research addressing these gaps may improve conceptual clarity and help clinicians better identify SD. Abstract (w. list of references): view source »

Palliative sedation: The end of heated debate?

PALLIATIVE MEDICINE | Online – 13 March 2018 – The long list of publications on palliative sedation (PS) in this journal demonstrates that research in the past decades has come a long way in describing and comparing its practice. However, several questions remain. How can we explain its rather high frequency in some countries? Also, in an era of increased emphasis on shared decision-making, how can patients or their representatives be adequately involved in the decision-making process? How should we deal with patients who suffer unbearably from refractory symptoms, but have a life expectancy of more than 1-2  weeks? Future work should critically evaluate whether PS guidelines still reflect and support current clinical and societal views on a good death. It should also focus on education about PS in medical and nursing curricula and informing the general public about what PS is and when it can be used. Such education would facilitate informed debates about the circumstances in which PS can be an acceptable procedure to support a good death. Full text: view source »

MW 554: Palliative care patients' quality of dying and circumstances of death: Comparison of informal caregivers' and healthcare professionals' estimates

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The findings [of this study] appear to show a high satisfaction with quality of dying and death as rated by ICGs and HCPs, but the authors suspect this might be indicative of a methodological challenge, that is, a ceiling effect in both assessments. Single low scoring items may provide important clues for improvement in end-of-life care. Although descriptive data show comparable mean values and standard deviations, the actual congruence of ratings is low. Replacing one rating by another cannot be recommended. Abstract: view source »

No one said he was dying: Families' experiences of end-of-life care in an acute setting

AUSTRALIAN JOURNAL OF ADVANCED NURSING, 2018;35(3):21-31. This study identified key actions for nurses and doctors in providing a best practice approach to caring for the dying person. Firstly, allowing families time to prepare for their loved ones death by identifying that the person is dying and family as soon as possible. Families need to be involved in the conversations, and have information, including prognosis, explained to them. Clinicians should be sensitive, use plain language and avoid euphemisms, with follow up to ensure the family understands. Secondly, there is potential for ambiguity and uncertainty at the end of life. Clinicians should explain the prognosis and that the dying process varies between individuals. This must be honestly and openly acknowledged, and discussed with patients, substitute decisionmakers, families and carers. Finally, families of people who are dying also need care from the treating team, both during the dying process and following the death. There is a need to ensure there is support for the family with their grief responses and to identify those that are at risk of complicated grief. In order to address these priorities all members of the interdisciplinary team should receive education and training to prepare them for having conversations about end-of-life care. To access the full text, click on the journal contents page and scroll down to the article: view source »

Barriers to advance care planning in end-stage renal disease: Who is to blame, and what can be done?

THE NEW BIOETHICS | Online – 7 March 2018 – Patients with end-stage renal disease experience significant mortality and morbidity, including cognitive decline. Advance care planning has been emphasized as a responsibility and priority of physicians caring for patients with chronic kidney disease in order to align with patient values before decision-making capacity is lost and to avoid suffering. This emphasis has proven ineffective, as illustrated in the case of a patient treated in the authors' hospital. Is this ineffectiveness a consequence of failure in the courtroom or the clinic? Through the authors' own experience they affirm what has been written before: that legal precedent favors intensive treatment in virtually all cases without "clear and convincing evidence" of a patient's previously declared wishes to the contrary. Equally clear is that more than 20 years of support in the clinical literature suggesting ACP early in the course of disease can address challenges in the legal system for those lacking capacity. However, many physicians fail to recognize the need for ACP in a timely manner and lack the necessary training to provide it. The need for more training and new tools to recognize opportunities for ACP in daily practice remains unmet. Abstract: view source »

MW 553: Assessment of the wish to hasten death in patients with advanced cancer: A comparison of two different approaches

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Patients were subsequently asked their opinion about this assessment. Correlation between scores on the SAHD-5 and the DDRS was moderate. The SAHD-5 identified 13 patients at risk of the WTHD, and the DDRS identified 6 patients with a moderate-high WTHD. Concordance between the DDRS and SAHD-5 in identifying individuals with an elevated WTHD was poor when using recommended cut-off scores..., but could be improved by using different thresholds. Only 4 patients regarded the assessment questions as bothersome, and 90.6% considered it important that healthcare professionals inquire about the WTHD. Abstract: view source »

The Liverpool Care Pathway for the Dying Patient: A critical analysis of its rise, demise and legacy in England

WELLCOME OPEN RESEARCH | Online – Accessed 27 February 2018 – The Liverpool Care Pathway for the Dying Patient ("the LCP") was an integrated care pathway (ICP) recommended by successive governments in England & Wales to improve end-of-life care (EoLC), using insights from hospice and palliative care (PC). It was discontinued in 2014 following mounting criticism and a national review. The ensuing debate among clinicians polarised between "blaming" of the LCP and regret at its removal. The authors aimed to address three questions: 1) Why and how did the LCP come to prominence as a vehicle of policy and practice; 2) What factors contributed to its demise; and, 3) What immediate implications and lessons resulted from its withdrawal? The rapidity of transfer and translation of the LCP reflected uncritical enthusiasm for ICPs in the early 2000s. The subsequent LCP "scandal" demonstrated the power of social media in creating knowledge, as well as conflicting perceptions about end-of-life interventions. While the LCP had some weaknesses in its formulation and implementation, it became the bearer of responsibility for all aspects of National Health Service (NHS) EoLC. This was beyond its original remit. It exposed fault lines in the NHS, provided a platform for debates about the "evidence" required to underpin innovations in PC and became a conduit of discord about "good" or "bad" practice in care of the dying. It also fostered a previously unseen critique of assumptions within PC. In contrast to most observers of the LCP story who refer to the dangers of scaling up clinical interventions without an evidence base, the authors call for greater assessment of the wider risks and more careful consideration of the unintended consequences that might result from the roll out of new end-of-life interventions. Full text: view source »

MW 552: Assessment and treatment considerations for post traumatic stress disorder at end of life

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Even if PTSD is properly diagnosed, traditional evidence-based trauma-focused treatments may not be feasible or advisable with this group as many patients at EoL often lack the physical and mental stamina to participate in traditional psychotherapy. This article reviews the clinical and empirical literature on PTSD at EoL, as well as discusses assessment and psychotherapy treatment issues with this neglected population. Abstract: view source »

Palliative medicine: Has there been mission rift?

EUROPEAN JOURNAL OF PALLIATIVE CARE, 2018;25(1):6-8. With its new-found status, one of palliative medicine's first challenges was to confront the prospect of evidence-based medicine. This new paradigm suggested tradition, anecdote and theoretical reasoning be replaced by evidence from high-quality randomised control trials and observational studies. In combination with "clinical expertise," these were to provide clinicians with the knowledge to drive healthcare into the new millennium. Thirty years later, other specialties have amassed an evidence base that stands tall over that of palliative medicine (PM). However, somewhat contradictorily, PM is widely regarded as offering a standard of care second to none. Within this paradox lies the answer to what really matters to people. Evidence-based medicine has its limitations. It has become distorted by vested interests, uses surrogate outcomes to establish efficacy, is a poor fit for frailty and multi-morbidity, and there are huge problems with publication bias. Despite this, we have created a volume of research and guidelines that has left us at saturation point. Compulsive reliance on evidence has created a breed of clinician trained in following a template driven approach that stifles development of the subtleties of clinical expertise. What lies beyond evidence-based medicine?

A framework for complexity in palliative care: A qualitative study with patients, family carers and professionals

PALLIATIVE MEDICINE | Online – 19 February 2018 – Palliative care (PC) patients are often described as complex, but evidence on complexity is limited. We need to understand complexity, including at individual patient-level, to define specialist PC, characterise PC populations, and meaningfully compare interventions/outcomes. Semi-structured interviews [were conducted] across six U.K. centres with patients, family, professionals, managers and senior leads, sampled by experience, background, location and setting (hospital, hospice and community). Participants provided an understanding of complexity, which extended far beyond the commonly used physical, psychological, social and spiritual domains. Complexity included how patients interact with family/professionals, how services respond to needs and societal perspectives on care. "Pre-existing," "cumulative" and "invisible" complexity are further important dimensions to delivering effective palliative and end-of-life care. The dynamic nature of illness and needs over time was also profoundly influential. Stakeholders found it acceptable to capture complexity at the patient-level, with perceived benefits for improving PC resource allocation. Full text: view source »

MW 551: How to achieve the desired outcomes of advance care planning in nursing homes: A theory of change

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The Theory of Change map provides the first comprehensive rationale of how ACP is expected to work in nursing homes, something that has not been shown by research before, but for which repeated calls have been made. We will use these insights in the further design of the ACP intervention and its evaluation to explore in greater depth how, why and in what circumstances ACP works best in routine nursing home care in Belgium. Full text: view source »

Research involving dying persons: Time to reconsider?

COLLEGIAN (Australian Journal of Nursing Practice, Scholarship & Research), 2018;25(1):1-2. Using research to generate evidence to inform clinical practice is a position adopted almost universally in healthcare, with health care organisations, policymakers and clinicians using research evidence to improve the quality of care. Yet, when it comes to palliative and end-of-life (EoL) care, the situation may be different. Research involving the dying, whether conducted in palliative care settings or elsewhere, is often considered ethically challenging and controversial. This is because of concern about the actual or potential vulnerability of persons approaching the EoL and whether the dying person can or should be involved in research. Yet, the caution associated with research participation for those who are dying, might need to be reconsidered. Despite concern from ethical review boards, researchers, clinicians and consumers that research involving dying persons might be intrusive, inappropriate or unethical, the research evidence suggests that dying persons who have participated in research did so with very good reason. Full text: view source »

A moment for compassion: Emerging rhetorics in end-of-life care

Medical Humanities | Online – 10 February 2018 – "Compassion" has become the flagship concept to be fostered in the delivery of end-of-life care (EoLC), and a rallying call for social action and public health intervention. The authors examine the emerging rhetorics of compassion as they relate to EoLC and offer a critique of the expanding discourse around it. They argue, even where individuals "possess" compassion or are "trained" in it, there are difficulties for compassion to flow freely, particularly within Western society. This relates to specific sociopolitical structural factors that include the sense of privacy and individualism in modern industrialised countries, highly professionalised closed health systems, anxiety about litigation on health and safety grounds, and a context of suspicion and mistrust within the global political scenario. We must then ask ourselves whether compassion can be created intentionally, without paying attention to the structural aspects of society. One consequence of globalisation is countries in the global South are rapidly trying to embrace the features of modernity adopted by the global North. The authors argue unrealistic assumptions have been made about the role of compassion in EoLC and these idealist aspirations must be tempered by a more structural assessment of potential. Compassion that is not tied to to realistic action runs the risk of becoming empty rhetoric. Full text: view source »

MW 550: End-of-life care for infants, children and young people with life-limiting conditions: Planning and management – the National Institute for Health & Care Excellence guideline 2016

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Today, there are 49,000 infants, children and young people (0-18 years) living with life-limiting conditions in the U.K. The recommendations aim to support a wide variety of professionals, and infants, children and young people with life-limiting conditions and their families, with issues regarding end-of-life and palliative care. Guidance on basic symptom management, communication, advance care planning and service delivery is included. This is the first U.K. published guideline on this subject, but there have been several published frameworks, care pathways, drug formularies and symptom management guidelines in this. Abstract: view source »

Integrated palliative care networks from the perspectives of patients: A cross-sectional explorative study in five European countries

PALLIATIVE MEDICINE | Online – 5 February 2018 – Although examining perspectives of patients on integrated palliative care (PC) organisation is essential, available literature is largely based on administrative data or healthcare professionals' perspectives. The authors recruited 157 patients from 23 integrated PC initiatives in Belgium, Germany, the U.K., Hungary and The Netherlands. About 33% reported contact with a PC specialist and 48% with a PC nurse. Relationships with PC specialists were rated significantly higher than other physicians. Compared to patients with cancer, patients with chronic obstructive pulmonary disease and chronic heart failure had significantly lower odds of reporting contact with PC specialists and patients with chronic obstructive pulmonary disease had significantly lower odds of reporting contact with PC nurses. Perceptions of main responsible healthcare professionals or caregivers in patient's care networks varied across countries. Perceived integration was significantly associated with overall satisfaction. Expert PC involvement needs to be explicated especially for non-cancer patients. One healthcare professional should support patients in understanding and navigating their PC network. Patients seem satisfied with care provision as long as continuity of care is provided. Full text: view source »

Family meetings in in-patient specialist palliative care: A mechanism to convey empathy

JOURNAL OF PAIN & SYMPTOM MANAGEMENT | Online – 5 February 2018 – Families [i.e., study participants] reported more empathy from staff following a family meeting... Some families with relatives who do not speak with each other reported that meeting facilitators were unable to manage the pre-existing dynamics. It would be beneficial to have more specific preparation and planning by the clinical team for meetings with people who have a history of familial conflict, and those where the staff's agenda is around discharge planning. Published guidelines could be adapted to better support staff to run meetings where there are complex family dynamics. Adoption of family meetings in outpatient settings has the potential to improve perceptions of empathy with a larger patient group. Abstract: view source »

MW 549: When paediatricians and families can't agree

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Paediatricians learn to live with uncertainty and similarly have to support parents and young people to accept this uncertainty. Sometimes we have to wait for nature to reveal itself or for the future to unfold as it should. Herein lies the art of paediatrics: the ability to watch and wait, intervening in a timely fashion when required to do so and recognising the sad eventuality of having to let go of life at times. This is our craft: to do what is in the child's best interests and use therapies that will help with life's quality but not unnecessarily prolong inevitable death. However there are competing interests in this delicate balance in doing what is right for the child. Abstract: view source »

Surveying care teams after in-hospital deaths to identify preventable harm and opportunities to improve advance care planning

THE JOINT COMMISSION JOURNAL ON QUALITY & PATIENT SAFETY, 2018;44(2):84-93. As part of a quality improvement initiative, a post-death care team survey was developed to explore how it might augment the existing process for learning from deaths. A survey was sent to the care team for all inpatient deaths on the hospital medicine and medical ICU services at one institution. Survey responses were reviewed to identify cases that required further investigation. During the distribution period ... 82 patients died, and 191 care team members were surveyed. Based on the survey responses, 5 patients (6.1%) not identified by other review processes were investigated further, resulting in the identification of several important opportunities for improvement. The free-text comment analysis revealed themes around the importance of advance care planning in seriously ill patients, as well as evidence of the emotional and psychological strain on clinicians who care for patients who die. Abstract: view source »

The growing demand for hospice and palliative medicine physicians: Will the supply keep up?

JOURNAL OF PAIN & SYMPTOM MANAGEMENT | Online – 2 February 2018 – The need for hospice and palliative care is growing rapidly as the population increases and ages and as both hospice and palliative care become more accepted. Hospice and palliative medicine (HPM) is a relatively new physician specialty, currently training 325 new fellows annually. Given the time needed to increase the supply of specialty trained physicians, it is important to assess future needs to guide planning for future training capacity. The current U.S. supply of HPM specialists is 13.35 per 100,000 adults 65 and over. This ratio varies greatly across the country. Using alternate assumptions for future supply and demand, the authors project need in 2040 will range from 10,640 to almost 24,000 HPM specialist physicians. Supply will range from 8,100 to 19,000. Current training capacity is insufficient to keep up with population growth and demand for services. HPM fellowships would need to grow from the current 325 graduates annually to between 500 to 600 per year by 2030 to assure sufficient physician workforce for hospice and palliative care services given current service provision patterns. Abstract: view source »

MW 548: Collaborative practice model: Improving the delivery of bad news

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The authors explored current processes, role perceptions and expectations, and perceived barriers to developing the model, which is now the standard of care and an example of interprofessional team collaboration across the healthcare system. This model for delivering bad news can be easily adapted to meet the needs of other clinical units. Abstract: view source »

Law as clinical evidence: A new constitutive model of medical education and decision-making

JOURNAL OF BIOETHICAL INQUIRY | Online – 18 January 2018 – Over several decades, ethics and law have been applied to medical education and practice in a way that reflects the continuation during the twentieth century of the strong distinction between facts and values. The authors explain the development of applied ethics and applied medical law and report selected results that reflect this applied model from an empirical project examining doctors' decisions on withdrawing/withholding treatment from patients who lack decision-making capacity. The model is critiqued, and an alternative "constitutive" model is supported on the basis that medicine, medical law, and medical ethics exemplify the inevitable entanglement of facts and values. The model requires that ethics and law be taught across the medical education curriculum and integrated with the basic and clinical sciences and that they be perceived as an integral component of medical evidence and practice. Law, in particular, would rank as equal in normative authority to the relevant clinical scientific "facts" of the case, with graduating doctors having as strong a basic command of each category as the other. The normalization of legal knowledge as part of the clinician's evidence base to be utilized in practice may provide adequate consolation for clinicians who may initially resent further perceived incursions on their traditional independence and discretion. Abstract (w. list of references): view source »

Spiritual care training in healthcare: Does it really have an impact?

PALLIATIVE & SUPPORTIVE CARE | Online – 23 January 2018 – Spiritual care has formed an integral part of palliative care (PC) since its inception. People with advanced illnesses, however, frequently report their spiritual needs are not attended to by their medical care team. This study examined and describes the impact of a spiritual care training program on practice and cultural change in a Canadian hospice. The authors' data suggest the program had a profound personal impact on attendees and contributed to a slight shift in practice patterns in their organization. Using a program not specifically tailored to local and organizational cultural contexts resulted in some unanticipated challenges such as the range of tensions between personal and cultural boundaries. Although some people criticized parts of the program or questioned the program's value, a general agreement suggests the program had a positive impact and meaningfully benefited the hospice. "What will happen next?" was the question most frequently voiced by interviewees. The present study suggests a systematic approach to spiritual care training that includes the concepts of workplace spirituality and sensitive practice offer useful frameworks for the development and implementation of spiritual care training in other institutions. Abstract: view source »

MW 547: Physicians' perceptions of hope and how hope informs interactions with patients: A qualitative, exploratory study

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Three themes describing hope emerged: "assessing hope," "fostering and sustaining hope," and "attributes and outcomes of hope." The findings show how physicians conceptualize hope and how these conceptions differ in the empirical light of the study. Physicians' perceptions of "hope" may evolve when entering into a therapeutic relationship exploring the needs and desires of patients. Physicians' perspectives about "hope" may at times not be solely their own, but are those of their patients and thus resulting in an amalgamation, or a rebuilding/rekindling of hope amidst hopelessness, that suits a particular relationship. Abstract: view source »

Forgoing life-sustaining treatments in the ICU. To withhold or to withdraw: Is that the question?

MINERVA ANESTESIOLOGICA | Online – 17 January 2018 – In the last decades, mortality from severe acute illnesses has considerably declined thanks to the advances in intensive care medicine. Meanwhile, critical care physicians realized that life-sustaining treatments (LST) may not be appropriate for every patient, and end-of-life care in the intensive care unit (ICU) started to receive growing attention. Most deaths occurring in the ICU now follow a decision to forgo life-sustaining treatments (DFLST), which can be implemented either by withdrawing (WDLST) or withholding (WHLST) life-sustaining treatments. Despite the broad consensus about the equivalence of the two practices from an ethical point of view, the issue of the best option between WDLST and WHLST constantly gives rise to controversies in clinical practice. This review is not intended to take a stand for or against WDLST or WHLST. Based on available evidence, the definitions of the two practices are first presented. Secondly, the preferences of ICU physicians towards WDLST and WHLST are examined. Finally, some arguments are offered outlining pros and cons of WDLST and WHLST, stressing that the clinician's attention should focus on an early and thorough recognition of patients in need of a DFLST, rather than on the theoretical strength and weakness of the two practices. This approach will enable physicians to make informed decisions on how to implement the limitation of LSTs, considering the patients' clinical conditions and preferences, the circumstances and needs of their families. Abstract: view source »

MW 546: Error trawling and fringe decision competence: Ethical hazards in monitoring and address patient decision capacity in clinical practice

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The authors argue that one common, fact-oriented patient education strategy may in practice easily tend to take a destructive form that they call error trawling. They argue on independent grounds that this strategy not only risks to overlook significant weaknesses in patient decision competence, but also to undermine patient capacity for decision-making and implementing care. In effect, this strategy for clinically monitoring and addressing the problem of fragile decision-making capacity brings hazards in need of address. The authors close by suggesting complementary and alternative strategies, and comment on how these may call for broadened competency among clinical health professionals. Abstract: view source »

Voluntarily stopping eating and drinking: A normative comparison with refusing lifesaving treatment and advance directives

JOURNAL OF LAW, MEDICINE & ETHICS | Online – 10 January 2018 – Refusal of lifesaving treatment, and such refusal by advance directive, are widely recognized as ethically and legally permissible. Voluntarily stopping eating and drinking (VSED) is not. Ethically and legally, how does VSED compare with these two more established ways for patients to control the end of life? Is it more questionable because with VSED the patient intends to cause her death, or because those who assist it with palliative care could be assisting a suicide? In fact the ethical and legal basis for VSED is virtually as strong as for refusing lifesaving treatment and less problematic than the basis for refusing treatment by advance directive. VSED should take its proper place among the accepted, permissible ways by which people can control the time and manner of death. Abstract: view source »

Patients' and oncologists' views on family involvement in goals-of-care conversations

Psycho-Oncology | Online – 5 January 2018 – Research on patient and physician perspectives about family involvement and influence on goals-of-care conversations is limited. The authors conducted semi-structured interviews at academic, community and municipal hospitals with patients with advanced cancer and their oncologists. They identified four themes: 1) Presence and duration of family involvement; 2) Family expectations; 3) Protecting patients'/family members' feelings; and, 4) Patient-family disagreement. For patients, the authors identified two additional themes: 1) Family and oncologist relationship; and, 2) Effects of cancer on family. Both patients and oncologists emphasized the importance of family support for the patient's understanding of their illness and on patients' emotions. The authors also identified ways in which family involvement may benefit or prove challenging to goals-of-care conversations. Abstract: view source »

MW 545: Acceptance in the end of life

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I trust experts to tell me what to do when I am lost in a maze that they can get out of. Likewise, we are called to help patients see through the misinformation, denial, overconfidence, distrust, and confusion that clouds their reasoning. When patients have metastatic cancer, they frequently do not know their prognosis, nor do they always understand the palliative intent of our treatment. This misconception holds for oncologists as well, who tend to overestimate survival time. Another major cause of over-treatment is that both physicians and patients tend to overvalue the end of life (EoL) and make irrational decisions. A life's ending is weighted especially heavily when quality of life (QoL) is judged. If you ask people to judge how desirable their life was, they overweight their life's quality at the end and ignore the duration. Physicians grasp this fact, preferring to avoid high-intensity EoL care more than non-physicians. However, we do not effectively communicate this skepticism to patients. Supportive care often yields a better QoL than active treatment, but it is underused and undervalued. Extending a poor QoL is considered a success due to biased thinking shaped by having extended lives of good quality. This misconception holds for oncologists, who tend to overestimate survival time... First page view: view source »

We're the eyes and the ears, but we don't have a voice: Perspectives of hospice aides

JOURNAL OF HOSPICE & PALLIATIVE NURSING, 2018;20(1):47-54. Hospice aides (HA) are integral to the delivery of home hospice care and play an essential role in the effective communication and collaboration of the hospice interdisciplinary team. Despite their critical role, little is known about their perceptions of their role in providing hospice services. This qualitative study explores HA's perspectives of their work; their relationships with patients, families, and interdisciplinary team members; and, their contributions to end-of-life care. Two focus groups of HAs and 16 hours of observation of in-home caregiving were conducted. Three themes were identified: 1) "We're the eyes and ears"; 2) "We're kept out of the loop"; and, 3) "We have no voice." HAs described themselves as frontline providers based on the close relationships they formed with patients and family members yet felt under recognized by members of the hospice team. Better understanding of their role could enhance the integration of HA into patient- and family-centered team interactions, leading to both improved patient and family outcomes and retention and support of this critical component of the hospice workforce. Abstract: view source »

"I'd recommend ..." How to incorporate your recommendation into shared decision making for patients with serious illness

JOURNAL OF PAIN & SYMPTOM MANAGEMENT | Online – 2 January 2018 – Patients and families facing serious illness often want and need their clinicians to help guide medical decision making by offering a recommendation. Yet clinicians worry that recommendations are not compatible with shared decision-making, and feel reluctant to offer them. The authors describe an expert approach to formulating a recommendation using a shared decision-making framework. They offer three steps: 1) Valuate the prognosis and treatment options; (2) Understand the range of priorities that are important to your patient given the prognosis; and, 3) Base your recommendation on the patient's priorities most compatible with the likely prognosis and available treatment options. Abstract: view source »

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