Global Palliative Care News Archive 2014, January - June

MW 364: Bereavement china and edge-work

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The logic behind this does not stand up to scrutiny; after hearing the worst news of your life, is your subsequent heartache alleviated one whit by the serving of tea in a nicely patterned china cup and slightly fancy teapot? Probably not, but it is something we do. It makes us feel better. Breaking bad news is actually a two-way process. The doctor is always affected somewhat by the encounter, although often in subtle and hidden ways. The "breaker" must enter a shared emotional space with the "breakee," which can feel discomforting and exhausting. Even the thickest-skinned physician often feels an unpleasant flicker of anguish as they watch someone's life fall apart. The heterogenous group of physical reactions is varied and difficult to prepare for. Some patients explode outward, sobbing and keening; some seem to physically diminish in front of you, collapsing in on themselves and becoming suddenly small and frail. Some move textbook-like through the Kübler-Ross model of grief; others merely become dazed and monosyllabic, their unseeing eyes focused on something horrible in the future. Most of us will have faced an actor in our medical school examinations, our clumsy attempts at delivering a ... diagnosis prompting a prolonged and rehearsed emotional reaction, while we squirmed with the awkwardness of it all. Perhaps, we should be awarding the top marks to the student who decides to boil the kettle and hunts down some teabags. view source »

MW 363: When patients are counting on miracles

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Many people believe faith complements medicine; seeing God in physician's work can be a source of comfort. But things can get awkward for doctors who don't believe in God... "All too often, clinicians unintentionally place themselves in direct competition with ... God," the authors [of the study], led by Johns Hopkins chaplain Rhonda Cooper, write. "The [medical] provider may be thinking, 'Well, you can believe all you want, but that miracle is not going to happen.'" That seems like a rather sarcastic thing to think to yourself in a room with a dying patient and her family, but the authors are medical professionals – they must know a God-related eye roll when they see one. But snarky doctors, consider yourselves warned: "For a religious patient, not even an esteemed or beloved physician will win in a contest with God," the authors helpfully note. view source »

1. 'AMEN in challenging conversations: Bridging the gaps between faith, hope, and medicine,' Journal of Oncology Practice, 6 May 2014. All health care practitioners face patients and families in desperate situations who say, "We are hoping for a miracle." Few providers have any formal training in responding to this common, difficult, and challenging situation. view source »

MW 362: When letting-be is more important than actions: Plea for a new culture of dying

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Active euthanasia and assisted suicide seem to be the adequate answers to this approach, but is death really well understood if we only try to handle it this way? Is autonomy really the only relevant principle to respect the concerns of dying individuals or desperate people who want to die? This contribution pleads for an emphasis on a new ethics of caring, because a truly human medicine is not possible without caring. It shows that care does not necessarily get in conflict with autonomy but that it is the prerequisite for autonomy. view source »

MW 361: New European consensus on palliative care in neuro disease

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One of the authors, David Oliver, a geriatrician at Wisdom Hospice and consultant in palliative medicine at the University of Kent, U.K., said that for progressive and disabling neurologic diseases without curative treatment, palliative care aims to relieve pain and other distressing symptoms and to affirm life while regarding dying as a normal process. It should neither hasten nor postpone death and should integrate the psychological and spiritual aspects of patient care. The paper, presented at the [recent] meeting of the European Neurological Society, is the product of a joint effort of the European Federation of Neurological Societies and the European Association for Palliative Care. In the face of little evidence-based information in this area, the joint task force decided to issue what it called a consensus document "based on the available evidence" rather than a guideline. view source »

MW 360: Do unto others: Doctors' personal end-of-life resuscitation preferences and their attitudes toward advance directives

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Doctors' attitudes have hardly changed in the past 23 years despite the passage of the Patient Self Determination Act [1990]. The data show doctors have a striking personal preference to fore go high-intensity care for themselves at the end-of-life and prefer to die gently and naturally. To the best of the authors' knowledge, this is is the first study to analyze resuscitation preferences of a large and diverse cohort of younger doctors and to determine that they too predominantly opt for comfort care for themselves at the end of life. Current national data show very clearly that terminally ill Americans receive care from many sub-specialists in the last six months of life and are subjected to ineffective high-intensity treatments only to die expected deaths from known chronic illnesses. An important question our study raises is why doctors choose to fore go high-intensity treatments for themselves at the end-of-life but continue to provide such care to their terminally ill patients? In other words, why are doctors choosing care for themselves that is very different from what they provide to their patients? view source »

MW 359: "Curative" treatments and palliative care: The lack of consensus

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Otherwise, this may be a major source of misunderstandings as disease-modifying therapy may be indicated in the incurable stages of the disease as well. In these palliative situations, it is essential to identify the realistic aim(s) of the therapy: prolongation of life, alleviation of suffering or both. Of 107 authors from publications about cancer who used both "palliative" and "curative" in the same abstract, 42 (39%) responded. The majority [survey respondents] understood "curative" treatments as "aimed at complete absence of disease for the rest of life," but 43% did not share this view. For example, 19% stated that the term describes cancer-directed therapy for prolongation of life or even regardless of the aspired goal. view source »

MW 358: To check or not to check: The role of checklists in children's palliative care

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It seeks to address the mind, body, and spirit in an era when most pediatric care is defined by 15-min intervals in which addressing the body is all that can be managed. It transcends cultures, as the death of a child is a loss that no parent would ever want to face. Yet, if children's palliative care is all of these things, why does it seem that something is holding us back? To answer this question, we often assemble a group of highly educated people to create a list of barriers. Our expert panel would likely come up with a list including lack of funding, lack of educated providers, and families' hesitancy to give up curative care for their child. There would probably be some lively debate about opioid availability, rights of the child, and symptom control. By the end of the day, it would be clear that at the heart of these barriers are two issues: 1) pediatric palliative care is usually not, or very minimally, available; and, 2) when it is available, it is a struggle to get children referred.

MW 357: Strategies for the economic evaluation of end-of-life care

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These are partly associated with the sensitivity of the topic and the feasibility of data collection but also, more fundamentally, a lack of agreement about the terms in which such care should be evaluated. This paper examines different theoretical perspectives from which economic evaluation of end of life care could be conducted, and argues for the application of a capability approach focusing on the opportunity for a good death. It then examines challenges with taking forward such an approach, including defining, measuring and valuing appropriate outcomes. Such an approach is viable, and explores how it might be taken forward to assist with resource allocation decisions. view source »

MW 356: Reining in patient and individual choice

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All of them [the author suggests] will make reference to the decline of paternalism. The bad old days of "doctor knows best" are gone and were replaced by the primacy of patient choice and informed consent. The response to the dominance of the principle of patient choice has been slow in building but it has come in a number of ways. Two sets of papers in this issue of the Journal of Medical Ethics show just how far this response has come and the degree to which the pendulum is swinging back in the other direction.1,2 view source »

1. 'Forced to be free? Increasing patient autonomy by constraining it.' view source »

2. 'Against autonomy: Justifying coercive paternalism.' view source »

MW 355: Understanding community engagement in end-of-life care: Developing conceptual clarity

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In the U.K., community engagement is a priority for the majority of hospices. Nevertheless, there exists some ambiguity about the range of different practice that exists under this heading, the principles underpinning it, and the outcomes for the work. This paper presents a definition and a conceptual model of community engagement for end-of-life care services and the communities they serve. view source »

MW 354: Wounded by the language of war

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Or much earlier, in the late 1800s, when doctors began using the word "armamentarium" to describe all the techniques, materials and equipment available to treat disease. Certainly these metaphors have since become pervasive, among patients and physicians, the public and the news media. Family members seek aggressive treatment for an ailing relative, saying, "He's a fighter," or "She's a survivor." We talk about whether people with terminal diseases want "heroic measures" or not. And when people die, we portray them not as having succumbed to disease, but as having struggled to the very end before being vanquished by a superior foe. Recent death notices in The New York Times (which are placed by families, as opposed to the obituaries written by reporters) memorialized a woman in her 90s who died "after a valiant battle against Alzheimer's and Parkinson's" and a 93-year-old man who died "after a long-fought battle with prostate cancer." The bellicose wording "reflects some of the death-denying and death-defying feelings we find in our culture," said Dr. Daniel Johnson, a palliative-care physician in Denver who directs the Kaiser Permanente Care Management Institute. "Society sees death as the enemy, so it's not surprising we turn to language that references war." view source »

MW 353: A 'code death' for dying patients

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But in this age of technological wizardry, doctors have been taught that they must do everything possible to stave off death. We refuse to wait passively for a last breath, and instead pump air into dying bodies in our own ritual of life-prolongation. Like a midwife slapping life into a newborn baby, doctors now try to punch death out of a dying patient. There is neither acknowledgement of nor preparation for this vital existential moment, which arrives, often unexpected, always unaccepted, in a flurry of panicked activity and distress. We physicians need to relearn the ancient art of dying. When planned for, death can be a peaceful, even transcendent experience. Just as a midwife devises a birth plan with her patient, one that prepares for the best and accommodates the worst, so we doctors must learn at least something about midwifing death. view source »

Noted in Media Watch, 13 January 2014, #340 (p.5):

§ AUSTRALIA (New South Wales) | The Newcastle Herald – 11 January 2014 – 'OpEd: Death needs a plan similar to childbirth.' There is a growing school of thought that suggests we could start accepting that chronic illness and end-of-life occur and plan for them in the way that we currently plan for the start of life. view source »

MW 352: An integrative review of dignity in end-of-life care

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Themes of dying with dignity are as follows: a human right, autonomy and independence, relieved symptom distress, respect, being human and being self, meaningful relationships, dignified treatment and care, existential satisfaction, privacy, and calm environment. Factors influencing dignity include demographic, illness-related, and treatment-/care-related factors, as well as communication. Models of dignity in end-of-life care and instruments to measure dignity were reported. Interventions to support dignity stressed physical, psychological, and spiritual supports not only to dying patients but also to family members. view source »

MW 351: A comparison of the willingness of resident and attending physicians to comply with the requests of patients at the end of life

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Small proportions of attendings and residents were willing to prescribe a lethal amount of sleeping pills (3% and 5%, respectively) and to give a lethal injection in its current illegal state (1% and 4%). A larger proportion of residents (32%) compared to attendings (19%) was willing to give a lethal injection if legal. Adjusting for socio-demographic factors, attending status was independently associated with willingness to extubate and to give a lethal injection if legal. The proportion of physicians willing to extubate increased across years since graduation, with the greatest differences occurring across the residency years (69 % to 86 %). view source »

MW 350: Bad words: Clinical case study about the desires of a patient to prolong her life and the doctors to communicate with her only using "positive" language

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She wants to be included in the decision-making process as much as possible, as long as clinicians use only "positive" language. Ms. H. considers ... "dying," "chemotherapy," "radiation" and "cancer" to be "bad words." For conversations in which these words cannot be avoided, she wants her clinicians to talk to her son. Her desired engagement includes hearing about risks, benefits, and alternatives to treatments if clinicians use only "positive" language. Finally, she says that she rarely sees doctors and that she is "very scared" of hospitals, despite exhibiting a comfortable demeanor. view source »

MW 349: The nature of ethical conflicts and the meaning of moral community in oncology practice

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1) delaying or avoiding difficult conversations; 2) feeling torn between competing obligations; and, 3) the silencing of different moral perspectives. Moral communities were characterized by respectful team relationships, timely communication, ethics-minded leadership, readily available ethics resources, and provider awareness and willingness to use ethics resources. Moral disagreements are expected to occur in complex clinical practice. However, when they progress to ethical conflicts, care becomes more complicated and often places seriously ill patients at the epicenter. Practice environments as moral communities could foster comfortable dialogue about moral differences and prevent or mitigate ethical conflicts and the moral distress that frequently follows. view source »

MW 348: Chemotherapy near the end of life

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Although most patients with metastatic cancer choose to receive palliative chemotherapy, evidence suggests most do not clearly understand its intent.1 In decision making about chemotherapy, doctors are supposed to describe, and patients are supposed to understand, the direct outcomes of the proposed treatment (for example, clinical response rates and side effects). However, the broader implications of such decisions can be just as important. In the linked paper by Wright and colleagues,2 choosing palliative chemotherapy was associated with a whole set of outcomes that may not have been known, expected, or discussed by patients, their family caregivers, and their oncologists. view source »

1. 'Patients' expectations about effects of chemotherapy for advanced cancer,' New England Journal of Medicine, 2012;367(17):1616-1625. [Noted in Media Watch, 29 October 2012, #277 (p.2)] view source »

2. 'Associations between palliative chemotherapy and adult cancer patients' end of life care and place of death: prospective cohort study,' British Medical Journal, 4 March 2014. view source »

MW 347: National hospice survey results: For-profit status, community engagement, and service

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For-profit hospices were less likely than non-profit hospices to provide community benefits, including serving as training sites, conducting research and providing charity care. For-profit compared with non-profit hospices cared for a larger proportion of patients with longer expected hospice stays including those in nursing homes. For-profit hospices were more likely to exceed Medicare's aggregate annual cap and had a higher patient disenrollment rate. For-profit were more likely than non-profit hospices to engage in outreach to low-income communities and minority communities and less likely to partner with oncology centers. Although Medicare's aggregate annual cap may curb the incentive to focus on long-stay hospice patients, additional regulatory measures ... should be considered as the share of for-profit hospices in the U.S. continues to increase. view source »

MW 346: On Goldilocks, care coordination, and palliative care: Making it "just right"

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The needs of patients and caregivers are similar regardless of the underlying life limiting illness. Appropriate timing of referrals is key, but this timing must be clearly defined for each disease group, with differences to be expected between cancer and chronic obstructive pulmonary disease. Not every patient needs to see a palliative care specialist, and the timing matters greatly when resources are limited. Thus, as palliative care continues to move further upstream in a patient's journey, these limitations necessitate that we be better able to match the right type of care with the right patient at the right time. Models of "care coordination" offer one potentially promising strategy for addressing this problem. In this issue of the Primary Care Respiratory Journal, Epiphaniou and colleagues report the results of a longitudinal qualitative study of patients' experiences with end-of-life care coordination in the U.K.1 These results highlight several important truths about the current state of care coordination. view source »

1. 'Coordination of end-of-life care for patients with lung cancer and those with advanced COPD: are there transferable lessons? A longitudinal qualitative study,' Primary Care Respiratory Journal, 29 January 2014. view source »

MW 345: Hope, positive illusions and palliative rehabilitation

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In this paper, the author offers a simple analysis of a simple word; explains why the inflated sense is unhelpful; shows why hope does not have a straightforward "opposite"; and, argues that "hope" is not a name for a metaphysical, psychological, or spiritual something-or-other. However, bewitched by their inflated understanding of "hope," some palliative care professionals apparently tell patients and carers what they should hope for – which could hardly be more patronizing – while others use it as a portmanteau term to describe whatever positive health care outcomes take their fancy. The author's suggestion is that palliative rehabilitation specialists should resist the temptations of inflation and glamorisation, and begin to use the word more precisely, modestly, and transparently. There is no such thing as "hope" the life force, "hope" the inner power, "hope" the universal human phenomenon, or "hope" the theological virtue. view source »

MW 344:
End-of-life care in Germany
"Please describe from your point of view a typical case of an error in palliative care": Qualitative data from an exploratory cross-sectional survey study among palliative care professionals

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This study explored incidents palliative care professionals perceive as typical errors in their practice, and descriptions of such events. Seven potential areas for errors were identified in the qualitative analysis: drug treatment, palliative sedation, communication, care organization, treatment plan, end-of-life care, and history taking. Six categories emerged as causes of errors: miscommunication, system failure, dysfunctional attitudes, lack of knowledge, wrong use of technology, and misjudgement. Data showed that medical errors in palliative care, as seen by professionals in the field, primarily affect medication and communication, and miscommunication and system failures are perceived as the leading causes of errors. A better understanding of the characteristics of errors within palliative care and further qualitative research are warranted to prevent errors and enhance patient safety. view source »

MW 343: Why oncologists lag on palliative care

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But oncologists are not all on board. As shown ... research conducted at three cancer centers that have well-established outpatient palliative care clinics found that 22 of the 74 medical oncologists interviewed believe that palliative care is an alternative to chemotherapy, rather than complementary care.2 The interviews were conducted in 2012; the ASCO Board of Directors approved the PCO in November 2011 and published it in February 2012. "There is a significant minority of oncologists who feel that palliative care is incompatible with chemotherapy even though that is no longer supported by guidelines," said ... Yael Schenker, MD, MS, a palliative care specialist at the University of Pittsburgh Cancer Institute (UPCI) in Pennsylvania. view source »

1. 'American Society of Clinical Oncology Provisional Clinical Opinion: The integration of palliative care into standard oncology care,' Journal of Oncology Practice, 6 February 2012. [Noted in Media Watch, 13 February 2012, #240 (p.10)] view source »

2. 'Oncologist factors that influence referrals to subspecialty palliative care clinics,' Journal of Oncology Practice, 3 December 2013. The authors [of this study] identified three main oncologist barriers to subspecialty palliative care referrals... 1) persistent conceptions of palliative care as an alternative philosophy of care incompatible with cancer therapy; 2) a predominant belief that providing palliative care is an integral part of the oncologist's role; and, 3) a lack of knowledge about locally available services. [Noted in Media Watch, 9 December 2013, #335 (p.11)] view source »

MW 342: Awareness of impending death for residents of long-term care facilities

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Although this late-stage awareness of impending death is arguably the first necessary step for a change in nursing homes to a palliative-oriented approach to care for people who are nearing death in late life, timely acknowledgement of the potential for death is needed to facilitate improvements in care for residents of long-term facilities. view source »

MW 341: The government wants you to have a comfortable (and cheap) death

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For some this is unavoidable – not every disease has as clear a turning point as cancer – but for others a lack of planning is to blame. The government, motivated by both compassion and thrift, wants to help. In death, at least, public wishes align neatly with the state's desire to save money. The National Health Service has calculated that if roughly one more patient per general practitioner died outside hospital each year, it would save £180m ($295m). In 2008 it introduced a broad end-of-life care strategy, which sought to increase awareness of how people die while improving care. Since then the proportion of people dying at home or in care homes (the split is about half-and-half between them) has increased, from 38% to 44%. To steer patients away from hospitals, GPs have been encouraged to find their 1% – those patients likely to die in the next year – and start talking about end-of-life care. This can be difficult for doctors. "As a profession we view death as failure," says Dr. Granger. Yet when there is no cure to be had, planning for death can be therapeutic for patients. view source »

MW 340: OpEd: Protect true hospice care

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The danger is that the for-profit companies that are gaming the system will damage the image of hospice, and worse, make some people reluctant to enter hospice care. Hospice care is intended for people who are terminally ill, and the goal is to manage a patient's pain, and care for the patient's emotional and spiritual needs. Some patients thoughtfully choose hospice care rather than taking extreme measures that at best might extend life for a few weeks. view source »

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