Global Palliative Care News Archive 2016, January - December

MW 493: Utilisation of home-based physician, nurse and personal support worker services within a palliative care programme in Ontario, Canada: Trends over 2005-2015

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A multidisciplinary team of health professionals is the most common delivery model for home-based PC in Canada. However, little is known about the changing temporal trends in the propensity and intensity of home-based PC. The purpose of this study was to assess the propensity to use home-based PC services, and once used, the intensity of that use for three main service categories: 1) Physician visits; 2) Nurse visits; and, 3) Care by personal support workers (PSWs) over the last decade. Three prospective cohort data sets were used to track changes in service use over the period 2005 to 2015. Both the propensity and intensity to use home-based physician visits and PSWs increased over the last decade, while service propensity and the intensity of nurse visits decreased. Meanwhile, there was a general tendency for service propensity and intensity to increase as the end of life approached. These findings demonstrate temporal changes towards increased use of home-based PC and a shift to substitute care away from nursing to less expensive forms of care, specifically PSWs. These findings may provide a general idea of the types of services that are used more intensely and require more resources from multidisciplinary teams, as increased use of home-based PC has placed dramatic pressures on the budgets of local home and community care organisations. view source »

MW 492: How do parents experience support after the death of their child?

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According to the results of this study, support initiated by professional should always include listening to parents and asking them at key moments after their child’s death whether they need (extra) support and what kind of support they would like to receive. Parents should also be asked specifically about the emotional support they receive from their family and their social network. When they lack this type of support, caregivers should explore with them how to reach out and receive more support. Furthermore, adequate communication skills and a respectful attitude are necessary in approaching the parents of a deceased child. Future study is necessary in which parents are contacted through hospitals or government registries of death in order to compare the responses of those who participate in support groups and those that do not. Next to this, further research with the use of online focus groups is desirable, because the scope to reach parents and to include them in research seems so much wider than traditional focus groups. view source »

MW 491: Trauma-informed hospice and palliative care

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For example, many people experience intensive medical interventions prior to their admission to hospice and/or PC, and there is increasing recognition that these interventions may be traumatic. These and related opportunities for trauma exposure may combine synergistically at the end of life, particularly in the presence of pain, anxiety, delirium, dementia, or ordinary old age. This, in turn, can negatively affect patient mental health, well-being, behavior, and reported experience of pain. This review closes with suggestions for future research and a call for universal assessment of psychological trauma history and symptoms in hospice and PC patients, along with the development of palliative trauma intervention strategies appropriate to these populations. view source »

MW 490: The status of a public health approach to palliative care at New Zealand hospices

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However, both phases of the study demonstrated that community engagement, one of the chief out-workings of a public health approach to PC, was incompletely understood and practised. Furthermore, the qualitative results showed that, while this approach is supported, there are significant barriers to implementation, including paternalism, resource constraints, adequate evaluation, and incomplete understanding of key concepts, such as social networking and community engagement. This study is the first to explore the extent to which a public health approach to PC is supported by hospices in New Zealand. The unique new findings show that there is need for the model to be recognized in policy. Related to practice, if the model is to be implemented to maximum benefit, further conceptual clarity of the key tenets is needed. In addition, addressing the barriers to implementation identified by this study will need to be prioritized by hospice leadership. view source »

MW 489: Measuring compassion in healthcare: A comprehensive and critical review

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Each is associated with significant limitations. Most only measure certain aspects of compassion and lack evidence of adaptability to diverse practice settings. The Evaluating Measures of Patient-Reported Outcomes of self-report instruments revealed a lack of psychometric information on measurement reliability, validity, responsiveness and interpretability, respondent, administrative and scoring burden, and use in sub-populations. Findings identified an unmet need for a psychometrically validated instrument that comprehensively measures the construct of compassion in healthcare settings. view source »

MW 488: GPs must be encouraged to play active role in palliative care

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"In a survey that we've carried out, there are big differences between GPs who follow up and make home visits to terminal patients, and those who neglect this task entirely," says Line Melby at SINTEF [Stiftelsen for industriell og teknisk forskning – The Foundation for Scientific & Industrial Research]. Together with her colleagues, Melby has carried out an evaluation of the services offered to persons requiring palliative treatment. The research is being carried out for the Norwegian Directorate of Health. The issue of the benefits of dying at home has been investigated as part of the evaluation. Do health care professionals believe that this is what patients want? And has Norway facilitated the opportunity for a good death at home? The public authorities and voluntary organisations frequently make the point that ideally, people should be allowed to die at home. The SINTEF survey revealed that, on the contrary, many thought that the aim of facilitating death at home will place great demands on healthcare professionals, next-of-kin and the municipal healthcare services. One respondent from a PC home unit said that he "believed that patients live with the idea of preferring to die at home, but only before they arrive here," referring to the fact that in his experience many people felt insecure at home. "Very few people in Norway die at home, and we are some way behind other countries such as The Netherlands, where it is common for people to be born and die at home," says Melby. "Norway is more institution-based than other countries, and even the elderly are for the most part in work. Our family and community structures are different. There has been a lot of discussion on this topic, but in our study the majority of respondents felt that death at home should not be an aim in itself, but that patients should be given the choice," she says. view source »

MW 487: Interventions and decision-making at the end of life: The effect of establishing the terminal illness situation

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When there is an explicit reference to the terminal phase of a disease in clinical histories, the number of interventions is reduced, and the number of end-of-life-related decisions is increased. However, for many routine interventions, patients continue to be treated like any other patient despite the registration of their terminal situation in the clinical history. According to these conclusions, it is necessary to undertake without delay educational interventions to improve the training of all professionals of acute care hospitals involved in the care of patients in a terminal illness situation. Secondly, it is also necessary to involve health managers, in the implementation of interventions and procedures to improve management of terminal illness situation in hospital settings, including improving data collected in clinical histories. view source »

MW 486: Factors associated with patient preferences for communication of bad news

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A questionnaire assessed their preferences regarding the communication of bad news, covering four factors: 1) How bad news is delivered; 2) Reassurance and emotional support; 3) Additional information; and, 4) setting – as well as on demographic, medical, and psycho-social factors. Multiple regression analyses indicated that patients who were younger, female, had greater faith in their physician, and were more highly educated placed more importance on "how bad news is delivered" than patients who were older, male, had less faith in their physician, and a lower level of education. Female patients and patients without an occupation placed more importance on "reassurance and emotional support." Younger, female, and more highly educated patients placed more importance on "additional information." Younger, female, and more highly educated patients, along with patients who weren't undergoing active treatment placed more importance on "setting." Physicians should consider these characteristics when delivering bad news and use an appropriate communication style tailored to each patient. view source »

MW 485: Finding evidence about the costs of palliative care: CareSearch's suite of search tools

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The vast and growing quantity of information about the costs of PC can be hard to navigate; it is stored in many different databases, across disciplines, and indexed on a variety of platforms with differing terminology. Health practitioners, policymakers and researchers in PC may not readily have the time or expertise needed to frame the detailed searches required to search the many different sources effectively. This paper describes the development of a resource that facilitates the retrieval of current high quality literature about economic aspects of PC. This paper highlights the importance of searching in multiple and appropriate databases for economics literature. The paper outlines the identification, testing and evaluation of existing search filters and other sources of information to determine the best resources to use and the best terms to use for each one. view source »

MW 484: Ethics, emotions, and the skills of talking about progressing disease with terminally ill adolescents: A review

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In most cases, clinicians should gently, but persistently engage adolescents directly in conversations about their disease prognosis and corresponding hopes, worries, and goals. These conversations need to occur multiple times, allowing significant time in each discussion for exploration of patient and family values. While truth-telling does not cause the types of harm that parents and clinicians may fear, discussing this kind of difficult news is almost always emotionally distressing. The authors suggest some "phrases that help" when clinicians strive to deepen understanding and facilitate difficult conversations with adolescents, parents, and other family members. view source »

MW 483: Voluntary stopping eating and drinking: Death with dignity or without?

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While there has been extensive discussion surrounding physician-assisted death (PAD), there has been less attention paid to the practice of voluntary stopping eating and drinking (VSED) near the end of life. Twelve compelling narratives [in this issue of Narrative Inquiry in Bioethics] represent a dramatic groundswell of attention to the practice of VSED.1 In a review of these narratives, numerous statements of significance emerged along with common ethical themes which bring to light matters that might otherwise remain idle. As such, integrity and autonomy become paramount while, unfortunately, logical fallacies like that of the slippery slope argument are asserted. view source »

1. Journal contents page: view source »

MW 482: What cost components are relevant for economic evaluations of palliative care, and what approaches are used to measure these costs? A systematic review

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These may include economic modelling approaches such as those which have recently been used to estimate costs of care in cancer. While some approaches will be country- or region specific, the value of internationally comparative economic data is significant and should drive further methodological developments in this area. view source »

MW 481: A proposal for values-based law reform on unilateral withholding and withdrawal of potentially life-sustaining treatment

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While the future of end-of-life law and policy no doubt includes many other issues, this is an urgent and immediate horizon issue for Canada as well as a number of other countries (e.g., the U.S., Australia, and New Zealand) and a more distant horizon (but inevitable) issue for many other countries as they move beyond the debate of whether to even withholding or withdrawal of potentially life-sustaining treatment (e.g., South Korea). In this paper, the authors attempt to take a step back from the drama and vitriol surrounding conflict that can arise when the health care team believes that treatment should not be provided and the patient's loved ones believe that it should. They suggest and model an approach to law and policy reform in this area. To that end, the authors begin with a review of what is known about what is going on in relation to unilateral withholding and withdrawal of treatment (without the consent or knowledge of the patient or patients substitute decision-maker) demonstrating that: it is happening; it is controversial; it is being challenged in courts; and, it is not being approached by the law in the same way in every country (or indeed, even in the same way within a country). They then present a process for pursuing law reform, exploring Canada as a case study, to provide a model strategy for approaching law reform in other countries and to advance the project of law reform in Canada. view source (280 KB) »

MW 480: Who knew? Inpatient palliative care also saves money

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Over a 5-year period, they would be looking at savings of more than $19 million. Researchers estimated the savings for an 11-bed PC unit based on the cost per day from fiscal year 2015 with a 6-bed unit ($444 lower costs per day compared with hospital inpatient stay before transfer to the palliative unit). They then calculated the cost savings for an 11-bed unit operating at 80% occupancy and estimated the direct cost savings of consultations by using established methods. The estimated savings from the 11-bed PC unit was calculated out to $1,336,000 per year or $6.7 million over 5 years. For PC consultations, the total estimated savings in direct costs per case were $2,530,000/year, or $12,650,000 over 5 years. view source »

MW 479: "Mystery shopper" study finds barriers to palliative care at major cancer centers

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Researchers chose to focus on National Cancer Institute-designated cancer centers because they all provide palliative care (PC) services along with other supportive care services. Results from the qualitative assessment showed that in approximately one-third of calls, researchers had difficulty obtaining information about PC services. In nearly 10% of calls, cancer center staff gave an answer other than "yes" as to the availability of PC services, even though such services were available. Answers varied and included responses such as: PC was for end-of-life patients only; no physicians specialized in symptom management; a medical record review would be needed first; and, 12 staff members said that they were unsure about the availability of PC or were unfamiliar with the term. Overall, only 37% of callers were told all seven supportive care services inquired about were offered. When answering "yes," call recipients were most likely to refer the callers to patient navigation and genetic assessment services. view source »

MW 478: Clinical checklists, tick boxes, and other aides memoire in end-of-life care in out-of-hours general practice

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Guidance from pathways or protocols can provide a helpful framework for the home healthcare team, including the visiting OOH GP, who may well not know the patient. Insufficient care and treatment in the absence of clear protocols may, as Dr. Knights points out, be a more likely outcome than inappropriate treatment in their presence. A typical GP consultation is undertaken to understand and agree with the patient or relatives what condition management and outcomes can be achieved. Not all boxes need ticking. Relevant ones need to be considered, managed, and reviewed, with a "safety net" that takes into account the variability and uncertainties of health, conditions, and people. In his section on the case for "tick box" end-of-life care, Dr. Knights makes his points well regarding such care in hospital, and the valuable practical assistance to all that accepted protocols or checklists can give. Their absence may make it more difficult to implement NICE guidelines consistently. view source »

1. 'Care of dying adults in the last days of life,' National Institute for Health & Care Excellence, December 2015. [Noted in Media Watch, 21 December 2015, #441 (p.7)] view source »

2. 'In defence of the "tick-box approach": Why end-of-life care (EOLC) is no exception,' British Journal of General Practice, 2016;66(647):290-291. EOLC in England must be tailored to the needs of dying patients rather than a "tick-box approach." [Noted in Media Watch, 30 May 2016, #464 (p.9)] view source »

MW 477: Palliative care in cancer: Managing patients' expectations

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This review aimed to explore this discrepancy between patients' and physicians' expectations by investigating three primary issues: 1) The factors associated with patients developing unrealistic expectations; 2) The implications of having unrealistic hopes and the effects of raising patients' awareness about prognosis; and, 3) Patients' and caregivers' perspective on disclosure and their preferences for communication styles. The discrepancy between patients' and doctors' expectations was associated with many factors including doctors' reluctance to disclose terminal prognoses and patients' ability to understand or accept such information. The majority of patients and caregivers expressed a desire for detailed prognostic information; however, varied responses have been reported on the preferred style of conveying such information. Communication styles have profound effects on patients' experience and treatment choices. Patients' views on disclosure are influenced by many cultural, psychological and illness-related factors, therefore individuals' needs must be considered when conveying prognostic information. view source »

MW 476: We doctors see death all around us, but we don't like to think about our own

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Most doctors also report wanting to die at home rather than in a hospital. Perhaps it is these general assumptions that make physicians not feel the need to explicitly discuss and outline their end-of-life preferences. In a survey of almost 1,000 physicians whose mean age was 68, almost 90% thought that their family members were aware of their wishes for end-of-life care.2 Almost half of those surveyed did not think their doctor was aware of their end-of-life choices, with 59% of those participants having no intention of discussing these wishes with their doctor in the next year. But we know that conversations about proxies and advance directives should happen long before they need to be utilized. A 2016 study found that physicians were as likely to be hospitalized in the last six months of life as were non-physicians.3 On average, they also spent more days in intensive care units at the end of life and were as likely as others to die in a hospital. So why are doctors dying in hospitals and in intensive care units instead of at home, when we know that their wishes tend to align with avoiding extreme measures at the end of life? view source »

1. 'Do unto others: Doctors' personal end-of-life resuscitation preferences and their attitudes toward advance directives,' Plos One, 28 May 2014. [Noted in Media Watch, 2 June 2014, #360 (p.11)] view source »
2. 'Life-sustaining treatments: what do physicians want and do they express their wishes to others?' Journal of the American Geriatric Society, 2003;51(7):961-969. view source »
3. 'How U.S. doctors die: A cohort study of healthcare use at the end of life,' Journal of the American Geriatrics Society, 16 May 2016. [Noted in Media Watch, 23 May 2016, #463 (p.12)] view source »

MW 475: Patients' perception of types of errors in palliative care: Results from a qualitative interview study

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Errors in PC touch similar aspects as in other areas of medicine, but there are also aspects specific to PC mainly related to issues such as communication, professionalism or advance care planning. The issue of errors in PC, and particularly errors from the patients' perspective, needs much more clinical and scientific engagement and this study may be seen as a baseline and index of important aspects. Therefore, the three level model developed – including 1) Definition of and differences between errors; 2) Types of errors; and, 3) Causes, consequences, recognition, meaning, handling and prevention of errors – gives a specification of issues to explore in more depth and detail in future projects. view source »

MW 474: Doctors' reports about palliative systemic treatment: A medical record study

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About 75% of all notes [of 147 patients studied] reported doctors' considerations to start/continue palliative systemic treatment, including information about the prognosis (47%), possible survival gain (22%), patients' wish for palliative systemic treatment (33%), impact on quality of life (8%), and patient's age (3%). Co-morbidity (82%), smoking status (78%) and drinking behaviour (63%) were more often documented than patients' performance status (16%). Conversations with the patient/family about palliative systemic treatment were reported in 49% of all notes. Response measurements and dose adaptations were documented in 75% and 71% of patients who received palliative systemic treatment respectively. Future research should further explore how medical records can best assist in evaluating the quality of the decision-making process in the patient's final stage of life. view source »

MW 473: Dying well with reduced agency: A scoping review and thematic synthesis of the decision-making process in dementia, traumatic brain injury and frailty

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Secondly, academic, public and professional discourse that presumed equivalence between minimal medical intervention in the dying process and a "good death" vied with counterfactual requests and behaviours when faced with death in reality. Poor understanding of death may drive this paradox, not just among the public, but among policy makers and healthcare professionals, suggesting that corrective intervention to increase understanding is a major challenge. Finally, the authors noted the tension between the increasingly international adoption of antecedent end-of-life decision-making and the difficulties in progressing this approach in countries where it is well established. While containing some interventions to promote antecedent end-of-life decision-making, the studies also documented widespread barriers to their use. Not least of these was the variety of personal perspectives on death, which suggests that parallel approaches require development. Together these three themes indicate a number of directions for future research in this area, which are likely to be broadly applicable to other conditions that result in reduced agency. Above all, this review emphasises the limits of current concepts and approaches to end-of-life decision-making, and the need for fresh approaches. view source »

MW 472: Embracing inherent uncertainty in advanced illness

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Uncertainty also drives fears about future debility, loss of control, and either inadequate or excessive healthcare. The authors question the perception that uncertainty is a barrier to appropriate person centred care towards the end of life. Uncertainty may in fact be more friend than foe. An unpredictable but evident risk of deteriorating and dying should be a trigger for planning care with all people who have an advanced illness and in all care settings. It offers a prime opportunity to accept and manage the inherent uncertainties of living and dying well with progressive, advanced conditions. view source »

MW 471: Law, perception, and cultural cognition near the end of life

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Facts and opinions are confused a great deal among the general public regarding scientific matters, perhaps because truly understanding science requires a degree of expertise many people do not have. Neuroscience – the science of the brain and the nervous system – is ripe for such confusion: confusion, which can cause great upheaval in medical settings. For example, "the most extraordinary end-of-life case ever" involved a family dispute over what most consider a neuroscientific fact – the diagnosis of a young woman as being in a vegetative state – that erupted into a nationwide spectacle. The case of Theresa Marie Schiavo [1990-2005] prompted twenty-four-hour-a-day news coverage, public protests, state and federal legislative action, and a papal pronouncement. The resulting "culture war" over whether to withdraw her life-sustaining treatment was a vivid reminder of how differently opposing sides of a dispute can view "facts." view source »

MW 470: Are rural and remote patients, families and caregivers needs in life-limiting illness different from those of urban dwellers? A narrative synthesis of the evidence

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Diagnosis and treatment are less well managed in rural areas. Rural differences include: 1) People are more accepting of death and less likely to intervene to delay death; and, 2) Caregivers tend to be younger and include friends as well as family and local support networks are important. Rural and remote end-of-life needs are shaped by reduced access and availability of services, which has a negative influence on outcomes. This is counterbalanced by an acceptance of death and local support networks. Well-designed longitudinal studies with samples comprised of rural and urban residents for comparison are required to monitor how end-of-life need might change with the approach of death. Clinicians, health services and policy makers need a better understanding of rural attitudes and of how rural community networks mobilise to support end-of-life care in their rural and remote communities. view source »

MW 469: Ethics in practice: Is it futile to talk about "futility"?

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A point may come when we feel that ongoing life-sustaining treatment should be withdrawn, or further interventions withheld, and we may justify this decision on the grounds that ongoing treatment is "futile." The concept of medical futility has existed for millennia. Hippocrates advised physicians "to refuse to treat those who are overmastered by their disease," realising that in such cases medicine is powerless. The state of being "overmastered" by a disease is subjective, as what may be intolerable to one person may be acceptable to another. Owing to this inherent subjectivity in defining what constitutes a burdensome existence, defining when a patient has been "overmastered" is not straightforward. The fact that many critically unwell patients lack capacity and cannot engage in decision making (defined in legal parlance as "incapax") with their physicians only adds to the difficulty of deciding when ongoing treatment of that patient should stop. view source »

MW 468: Reason-giving and medical futility: Contrasting legal and social discourse in the U.S. with the U.K. and Ontario, Canada

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The authors describe three recent cases from different countries (the U.S., U.K., and Ontario, Canada) to qualitatively contrast the legal responses to intractable, policy-level disputes regarding end-of-life care in each of these countries. In so doing, they define the continuum of clinical and social utility among different types of dispute resolution processes, and emphasize the importance of public reason-giving in the societal discussion regarding policy-level solutions to end-of-life treatment disputes. The authors argue precedential, publicly available, written rulings for these decisions most effectively help to move the social debate forward in a way that is beneficial to clinicians, patients, and citizens. This paper highlights the lack of such rulings within the U.S. view source »

MW 467: Compromised autonomy: When families pressure patients to change their wishes

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A case example, based on a clinical ethics consultation, is used to highlight the complexities of compromised autonomy secondary to family coercion and manipulation at the end of life. Decision making in the context of family involvement and relational autonomy is explored along with effects of caregiver stressors, patient/family disagreements, and the nuances of substituted judgment. The article closes with a discussion of universal strategies for best working with and advocating for patients who are experiencing compromised autonomy. view source »

MW 466: Which public health approach to palliative care? An integrative literature review

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A thematic synthesis of these studies identified three different paradigms of a public health approach to PC within the current empirical research. These were defined as a health-promotion approach focused on empowerment at community level, a World Health Organisation approach which focused on systems at country level, and a population-based approach which typically viewed PC issues from an epidemiological perspective. This review highlights that the public health approach to PC is understood in various ways. It is important that future research studies clarify which public health approach they are referring to. view source »

MW 465: Ambitions for palliative and end-of-life care

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This comes less than 30 years after palliative medicine was formally recognised as a specialty within the Royal College of Physicians and less than 10 after the term "end-of-life care" was formally defined as "last year of life" in the first national End-of-Life-Care Strategy in 2008. In practice, although the definition of "end-of-life care" is time-based and "palliative care" is needs-based, the approach is similar. Like respiratory, cardiac, renal and most other specialties, palliative care has both generalist and specialist components, so all doctors need to be able to deliver this kind of care well, involving palliative medicine specialists when they reach the limits of their competence and confidence. This issue of Clinical Medicine carries a piece on the National Institute for Health & Care Excellence clinical guideline for care of the dying adult.2 view source »

1. 'Ambitions for Palliative and End-of-Life Care: A national framework for local action 2015-2020,' National Palliative & End-of-Life Care Partnership, September 2015. [Noted in Media Watch, 14 September 2015, #427 (p.14)] view source »

2. 'Care of dying adults in the last days of life,' Clinical Medicine (Royal College of Physicians), 2016; 16(3):254-258. view source »

MW 464: We doctors can't prescribe a "good death"

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Western ideas about death are informed by secularism and individualism. The current discussion on death and dying, however, has been hijacked by the extremists on both sides. In the barren and neglected middle ground are truths that we have conveniently ignored. As contemporary issues, assisted suicide and advance directives are both a symptom of a deeper malaise (namely the obsession with personal autonomy and control) and a distraction. They are a distraction because the real issues are elsewhere. Death, we are constantly told, has become "medicalised." Roughly half of all people dying in Britain or Ireland do so in a general hospital. Just over 20% die at home, and only 5% in a hospice. Large general hospitals are the best place to be when you are very sick, but are ill-equipped to meet the needs of the dying. The Liverpool Care Pathway, a rather quixotic, tick-boxy attempt to give hospice-type care to people dying in general hospitals, was an abject failure.4 Acute hospitals are criticised, with some justification, for failing to care properly for the dying, yet society has handed over most of the responsibility for such care to these institutions. view source »

1. 'End of Life Care Audit – Dying in Hospital National report for England 2016,' Royal College of Physicians, May 2016. [Noted in Media Watch, 9 May 2016, #461 (p.6)] view source »
2. 'End-of-life care and physician-assisted dying,' British Medical Association, January 2016. (Scroll down to 'Reflections & Recommendations,' Volume 3) [Noted in Media Watch, 18 January 2016, #445 (p.4)] view source »
3. 'A different ending: Addressing inequalities in end-of-life care,' Care Quality Commission, May 2016. [Noted in Media Watch, 16 May 2016, #462 (p.5)] view source » 4. 'Review of Liverpool Care Pathway for Dying Patients,' Department of Health, July 2013. [Noted in Media Watch, 22 July 2013, #315 (p.6)] view source »

MW 463: The near-failure of advance directives: Why they should not be abandoned altogether, but their role radically reconsidered

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Although advocates and critics of ADs exchange relevant empirical and theoretical arguments, the debate is inconclusive. The authors argue that this is so for good reasons: the ADs' project is fraught with tensions, and this is the reason why they are both important and deeply problematic. They outline six such tensions, and conclude with some positive suggestions about how to better promote patients' autonomy in end-of-life decision. The authors argue that ADs should continue to be an option, but they cannot be the panacea that they are expected to be. view source »

MW 462: Ethical priority setting for universal health coverage: Challenges in deciding upon fair distribution of health services

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Three criteria for priority setting are widely accepted among ethicists: cost-effectiveness, priority to the worse-off, and financial risk protection. Thus, a fair health system will expand coverage for cost-effective services and give extra priority to those benefiting the worse-off, whilst at the same time providing high financial risk protection. It is considered unacceptable to treat people differently according to their gender, race, ethnicity, religion, sexual orientation, social status, or place of residence. Inequalities in health outcomes associated with such personal characteristics are therefore unfair and should be minimized. This commentary also discusses a third group of contested criteria, including rare diseases, small health benefits, age, and personal responsibility for health, subsequently rejecting them. Countries need to agree on criteria and establish transparent and fair priority setting processes. view source »

Why population health and palliative care need each other

JOURNAL OF THE AMERICAN MEDICAL ASSOCIATION | Online – 12 May 2016 – Two evolving disciplines in medicine have brought new ways of thinking about health and disease. One is palliative care (PC), which focuses on improving the quality of life of patients with serious illnesses and their families. A second is population health, which focuses on improving the health of populations, with a special emphasis on reducing disparities in health outcomes and improving the value of health care. Although PC and population health are related, there has been limited discussion about how these two disciplines can support and complement each other. This synergy is key to improving the quality of care of frail older persons with chronic, life-limiting illnesses. The authors describe the potential synergies between these two disciplines and propose next steps to foster collaboration. view source »

MW 461: Midwifing the end of life: Expanding the scope of modern midwifery practice to reclaim palliative care

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Current midwives, skilled in assisting women and families through the transition of pregnancy to motherhood, can use their education and skills to help individuals and their families through the transition from life to death. The similarities between these states of the human experience (pregnancy to birth and terminal illness to death) allow for a fluidity between these experiences from the midwife perspective. The many parallels between these two elements of the human condition include stress, anxiety, and pain. view source »

MW 460: Advance care planning: Not a panacea

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Potentially effective elements of ACP are patients' raised awareness that they have options to choose from; having a targeted and structured conversation about preferences for future or current care; the documentation of such preferences; the mere fact that patients, relatives, and care professionals communicate, or the patients' knowledge that their relatives know their preferences and will act on their behalf. The authors recommend further research to disentangle these potentially effective elements of ACP, but also their potentially negative impact, and to explore whether ACP models can be tailored to preferences of patients from different cultures or backgrounds, such as those with low literacy levels. There is also a need to understand who is best equipped to initiate and guide the process of ACP and how that should be done, what the right moment to start ACP is, what can be appropriate settings for ACP, and how the ACP process should be supported over time when a patient's condition deteriorates. Finally, guidance for professionals is needed on how to implement evidence-based ACP models in their practice. Raising healthcare professionals' awareness and educating them about the importance of timely communication with patients and their relatives about what really matters to them should be part of healthcare professional training programs at any level. view source »

MW 459: Prevalence and predictors of burnout among hospice and palliative care clinicians in the U.S.

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Overall, the authors observed a burnout rate of 62% [among survey respondents], with higher rates reported by non-physician clinicians. Most burnout stemmed from emotional exhaustion, with depersonalization comprising a minor portion. Factors associated with higher rates of burnout include working in smaller organizations, working longer hours, being younger than 50 years, and working weekends. We did not observe different rates between PC clinicians and hospice clinicians. Higher rated self-management activities to mitigate burnout include participating in interpersonal relationships and taking vacations. view source »

MW 458: Addressing uncertainty: What is the role of consensus in end-of-life care

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Efforts to attenuate this uncertainty through rigorous scientific investigation may be met with legal and ethical challenges, and high-quality evidence is often absent. Without high-quality evidence to guide decision-making, the importance of consensus in EOLC becomes readily apparent. Although it may be impractical to establish a universal understanding of what is "beneficial" or what it means to "do no harm" at the end of life, achievement of consensus is possible in many different areas of EOLC. When driven by a desire to improve the quality of dying and death for patients and their family members, consensus in EOLC can serve as an important source of direction for clinicians. view source »

MW 457: A qualitative inquiry on palliative and end-of-life care policy reform

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Respondents identified four central challenges to advancing PC policies: 1) Knowledge about PC in the health care setting: 2) Cultural beliefs about PC; 3) Payment/reimbursement for PC services; and, 4) Public understanding of PC. Of the wide range of solutions proposed by respondents, the authors present the eight most frequently discussed solutions to these challenges targeted towards policymakers, health care professionals, research, and the general public. A qualitative approach of querying experts identified multiple significant challenges to improving and expanding PC, most of which are acknowledged in existing consensus statements. Proposed solutions were more numerous and diffuse than descriptions of the problems, signaling the need for further consensus building around actionable policy, and better understanding of how to advance a PC policy agenda. view source »

MW 456: Culturally competent palliative and hospice care training for ethnically diverse staff in long-term care facilities

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The purpose of this study was to evaluate a palliative and hospice care training of staff in two nursing homes in Hawaii: a) to evaluate knowledge and confidence over three time periods; and, b) to compare staff and family caregiver satisfaction at end of program. The overall staff knowledge and confidence results were promising. The staff rated overall satisfaction of palliative care services lower than the family caregivers. Implications for future research, practice, and education with palliative and hospice care training of ethnically diverse nursing home staff is to include patient and family caregiver satisfaction of palliative and hospice care services, evaluation of effectiveness of cross-cultural communication theories in palliative and hospice care staff training, and support from administration for mentorship and development of these services in long term care facilities. view source »

N.B. In 2014, about 67,000 paid, regulated long-term care services providers served about nine million people in the U.S. Long-term care services were provided by 4,800 adult day services centers, 12,400 home health agencies 4,000 hospices, 15,600 nursing homes, and 30,200 assisted living and similar residential care communities. Source: Analytical & Epidemiological Studies (#37), National Center for Health Statistic, February 2016. view source »

MW 455: The right to palliative care: A "mirage" in the jurisprudence of the European Court of Human Rights and Inter-American Court of Human Rights

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The purpose of this paper is to fill this gap and to assess and subsequently compare and contrast the respective approaches of the ECtHR and of the IACtHR to PC. The paper addresses, through some relevant examples, the enduring resistance by these two human rights courts to the affirmation of a human right to PC. It also formulates some proposals for overcoming these difficulties, including among others: 1) An interpretation of the right to life under Article 2 of the ECHR aimed at distinguishing euthanasia from PC; 2) a care-oriented interpretation of the prohibition of inhuman and degrading treatments under Article 3 ECHR by the ECtHR; 3) a constant use of the notion of the "vida digna" ["dignified life"] under Article 4 of the ACHR in the medical jurisprudence of the IACtHR; 4) a use of the Inter-American Convention on the Rights of Older Persons of 2014 that explicitly recognizes a right to PC in the ACtHR's case-law; and, 5) a use of the WHO recommendations related to PC in the medical case-law of the ECtHR and the ACtHR. view source »

MW 454: Doctors may treat dying patients for too long, finds British Medical Association report

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People nearing the end of their lives should only receive medical intervention if it is "appropriate and proportionate," according to the inquiry, which also criticised the National Health Service (NHS) for not consistently delivering care to dying patients across the country. It urges Britain's 250,000 doctors to be guided by their clinical judgment about a patient's closeness to death and resist "pressure" from the person or their family to continue treatment that would bring no benefit. But it also advises medics not to take decisions that would leave patients feeling they have been "abandoned or denied treatment for reversible conditions or to relieve symptoms simply because they seem to be approaching the end of their life or have a terminal condition." The report, which drew on the views of 237 doctors and 269 members of the public, calls for wide-ranging changes to how the NHS handles EOLC to ensure every patient has "a good death." It identified a series of flaws in care for those nearing the end of their lives. view source »

1. 'End-of-life care and physician-assisted dying (Volume 3): Reflections and recommendations,' British Medical Association, March 2016. [Vols. 1 & 2 noted in Media Watch, 18 January 2016, #445 (p.4)]. view source »

MW 453: Evidence still insufficient that advance care documentation leads to engagement of healthcare professionals in end-of-life discussions: A systematic review

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Perceived effectiveness of advance care documentation (ACD) in encouraging EOL discussions appears to be high, but is mostly derived from low-level evidence studies. This may indicate a willingness and openness of patients, surrogates and staff to perceive advance directives as an instrument to improve communication, rather than actual evidence of timeliness or effectiveness from suitably designed studies. The assumption that ACDs will lead to higher physicians'€™ confidence or engagement in communicating with patients/families could not be objectively demonstrated in this review. view source »

MW 452: Dying better, even if it means sooner

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And while some studies have argued for cost savings associated with hospice care,1 others show cost neutral effects of engaging hospice in the last months of life,2 depending on how cost is measured and over what period of life. Meanwhile, a number of states are passing aid-in-dying laws, which will have moral, social and economic impacts, but the bills are simply directed at ending suffering; the changes in dying made possible by such laws (notably in Oregon) have not been the subject of economic analysis to date. In short, driving down end-of-life costs will be slow because these costs are sustained by medical practice and patient choice, both social and behavioral practices subject to slow change. While this level of spending is unsustainable, there are greater costs – constantly fighting against death's inevitability is also deeply unsatisfying. view source »

1. 'Association between the Medicare Hospice Benefit and health care utilization and costs for patients with poor-prognosis cancer,' Journal of the American Medical Association, 2014;312(18):1888-1996. [Noted in Media Watch, 17 November 2014, #384 (p.4)] view source »

2. 'Changes in Medicare costs with the growth of hospice care in nursing homes,' The New England Journal of Medicine, 2015;372(19):1823-1831.[Noted in Media Watch, 11 May 2015, #409 (p.12)] view source »

MW 451: The pendulum swings for opioid prescribing

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The worst thing I read was advice in the Journal of the American Medical Association in a paper written in the 1940s that, when a doctor prescribes morphine to a patient dying of cancer in the hospital, he should alternate "real" drug with placebo in order to see if the patient really needs the drug. Yikes! The 1990s and 2000s saw an increase in the willingness of physicians to prescribe opioids because of the correction of this fundamental misunderstanding. Although we learned that pain is complex, and multifactorial, and that opioids are good for some kinds of pain (e.g., cancer pain, postoperative and post-traumatic pain), there are other kinds of pain (e.g., muscle strain, low back pain without radiological abnormalities) where it doesn't work at all. But nuance doesn't make for good marketing, and opioids as all-around safe analgesics for everything that hurts made for promiscuous prescribing. The pendulum swung to the other end of its arc. Please be a voice to stop the pendulum from swinging. Where you can, reach out to stop the swing and bring it to rest where it is at rest. view source »

MW 450: Doctor, can we get this over with?

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Palliative care (PC) arose as a response to patient experiences of poor quality dying. People were dying in hospital surrounded by machines that provided futile treatment rather than being comfortable in a loving and supportive community. Following a long period of evidence building, the benefits of PC in improving quality of living and dying are now relatively robust. However, making physicians aware of what PC can do for their patients and why it should be incorporated into disease management at an early stage is still an ongoing struggle. The toughest part is convincing physicians and surgeons that if they care for patients who have serious illnesses, they are obliged to have basic skills and knowledge in PC. view source »

MW 449: The effects of advance care planning interventions on nursing home residents: A systematic review

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1) 5 studies evaluating educational programs; 2) 5 studies introducing or evaluating a new ACP form; 3) 2 studies introducing an ACP program with a palliative care (PC) initiative; and, 4) 1 study observing the effect of do not resuscitate orders on medical treatments for respiratory infections. A range of effects of ACP was demonstrated in the study populations. Hospitalization was the most frequent outcome measure used across the included studies. Analysis found that in the nursing home population, ACP decreased hospitalization rates by 9%-26%. Of note, in the 2 studies that included mortality, the decrease in hospitalization was not associated with increased mortality. Place of death is another important effect of ACP. Analysis found significant increases in the number of residents dying in their nursing home by 29%-40%. Medical treatments being consistent with ones' wishes were increased with ACP although not to 100% compliance. Two studies showed a decrease in overall health costs. One study found an increase in community PC use but not in-patient hospice referrals. view source »

MW 448: Palliative care reimagined: A needed shift

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Professional, evidence-based symptom management and the importance of supportive care in its widest possible sense were and remain the cornerstones of the modern PC approach. However, the majority of people with terminal illnesses do not have access to PC teams, whose main focus of care remains patients with cancer. In the context outlined above, this paper therefore poses two key questions: How can we provide an equitable level of care for all people irrespective of diagnosis and how can we increase the range and quality of non-medical/nursing supportive care in a context of diminishing resources? The authors argue that an important opportunity and solution can be found by adopting the principles of a public health approach to end-of-life care. view source »

MW 447: Defining a good death (successful dying): Literature review and a call for research and public dialogue

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1) Preferences for a specific dying process; 2) Pain-free status; 3) Religiosity/spirituality; 4) Emotional well-being; 5) Life completion; 6) Treatment preferences; 7) Dignity; 8) Family; 9) Quality of life; 10) Relationship with HCP; and, 11) Other. The top three themes across all stakeholder groups were: 1) Preferences for dying process (94% of reports); 2) Pain-free status (81%); and, 3) Emotional well-being (64%). However, some discrepancies among the respondent groups were noted in the core themes e.g., family perspective articles included dignity (70%), life completion (80%), and presence of family (70%) more frequently than did patient perspective articles regarding those items (55% for each of these three themes). Religiosity/spirituality was reported more often in patient articles (65%) than in HCP (59%) and family (50%) articles. While there was agreement among stakeholders in the importance of many aspects of dying well, the presence of discrepancies in certain areas suggests a need for research on the impact of divergent perspectives on end-of-life care. Dialogues among the stakeholders for each individual must occur to ensure a good death from the most critical viewpoint – the patient's. view source »

MW 446: Compassion: A scoping review of the healthcare literature

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However, these studies often rely on preconceived theoretical definitions of compassion that lack specificity, clinical applicability, conceptual validity, and fail to adequately incorporate the understandings and experiences of patients. As a result, compassion is arguably one of the most referenced principles of quality care for which there is little empirical evidence. Compassion is inextricably linked to the inherent qualities of clinicians being actualized through acknowledgment, engagement, and action in response to patient suffering. Clinicians' capacity for compassion is largely determined by their baseline qualities, qualities that can be either nurtured or eroded within clinical and educational settings. While this review has identified a multiplicity of directions for future research, two directions seem paramount. First, there is a need to reset the empirical foundation of compassion research by establishing its conceptual specificity, thereby providing a scientific base to conduct future research on the topic that is marked by validity and rigor. Second, there is a pressing need for applied research, investigating compassion within the clinical setting, as it is at the bedside that compassion seems to either flourish or falter. Above all, future research on the nature of compassion and its application in clinical practice needs to incorporate the perspective of patients, who desperately desire and increasingly expect compassion to be a core component of their healthcare experience. view source »

MW 445: An international consensus definition of the wish to hasten death and its related factors

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Following an exhaustive literature review, a modified nominal group process and an international, modified Delphi process were carried out. The nominal group served to produce a preliminary definition that was then subjected to a Delphi process in which 24 experts from 19 institutions from Europe, Canada and the U.S. participated. Delphi responses and comments were analysed using a pre-established strategy. All 24 experts completed the three rounds of the Delphi process, and all the proposed statements achieved at least 79% agreement. Key concepts in the final definition include the WTHD as a reaction to suffering, the fact that such a wish is not always expressed spontaneously, and the need to distinguish the WTHD from the acceptance of impending death or from a wish to die naturally, although preferably soon. The proposed definition also makes reference to possible factors related to the WTHD. view source »

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