Global Palliative Care News Archive 2011, January - June

MW 207: Hospital do-not-resuscitate orders: Why they have failed and how to fix them

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DNR discussions do not occur frequently enough and occur too late in the course of patients' illnesses to allow their participation in resuscitation decisions. Furthermore, many physicians fail to provide adequate information to allow patients or surrogates to make informed decisions and inappropriately extrapolate DNR orders to limit other treatments. Because these failings are primarily due to systemic factors that result in deficient physician behaviors, the authors propose strategies to target these factors including changing the hospital culture, reforming hospital policies on DNR discussions, mandating provider communication skills training, and using financial incentives.

MW 206: National End of Life Care Intelligence Network one year on

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The NEoLCIN aims to improve the collection and analysis of data about end of life care services. It provides valuable information to government, service providers, commissioners and researchers on adults approaching the end of life and on the quality, volume and costs of care provided to them. Such intelligence will help drive improvements in the quality and productivity of services. This document highlights what the network has achieved in its first year of operation.

MW 205: Approaching patients and family members who hope for a miracle

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An evidence-based approach is provided for the clinician by breaking this complex clinical problem into a series of more focused clinical questions and subsequently answering them through a critical appraisal of the existing medical literature. Belief in miracles is found to be common in the U.S. and is an important determinant of how decisions are made for those with advanced illness. There is a growing amount of evidence that suggests end-of-life outcomes improve with the provision of spiritual support from medical teams, as well as with a proactive approach to medical decision making that values statements given by patients and family members.

MW 204: Legal ambiguities surround authority to make end-of-life decisions

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An informal survey of Canadian case law indicates that courts have been all over the map on the issue, which has recently resurfaced in the headlines as part of a dispute between two physicians at the Sunnybrook Health Sciences Centre in Toronto, Ontario, and the family of a comatose man. The decision, which could radically alter how end-of-life decisions must be made in Ontario, pivots on the question of who should call the shots at end-of-life, an issue that has divided physicians, ethicists and legal minds for decades. The Ontario Court of Appeal is now deliberating whether to overturn a Superior Court ruling in April that would require doctors to obtain consent from patients or their substitute decision-makers to withdraw life-sustaining treatment, or failing that, take all disputed cases to the province's Consent & Capacity Board for mediation. The physicians believe that the lower court ruling would effectively force doctors to continue treatment as long as a patient or patient's surrogate desires, even in cases where it may not provide medical benefit or may even harm the patient, explains Mark Handelman, a Toronto lawyer intervening in the case and former adjudicator for the Consent & Capacity Board. "The fear is they'll end up with an intensive care unit full of people whose wishes, values or beliefs mean they have to be kept alive to suffer." Conversely, if ... [the] ... appeal is successful, it will set a major precedent that will allow Ontario doctors to make unilateral decisions about treatment at end-of-life, with or without consideration for patients' wishes, values or religious beliefs, Handelman argues. "I would be astonished to ever see another end-of-life case go before the Consent & Capacity Board. Why bother?" (Open Access)

Lauren Vogel. Legal ambiguities surround authority to make end-of-life decisions. CMAJ July 12, 2011 vol. 183 no. 10 First published June 6, 2011. Download PDF

MW 203: Courteous but not curious: How doctors' politeness masks their existential neglect

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This medical focus often over-rode other important aspects of the consultations, especially existential elements. The doctors actively directed the focus away from their patients' existential concerns onto medical facts and rarely addressed the personal aspects of a patient's condition, treating them in a biomechanical manner. At the same time, however, the doctors attended to their patients with courteousness, displaying a polite and friendly attitude and emphasizing the relationship between them. The study suggests that the main failing of patient-doctor encounters is not a lack of courteous manners, but the moral offence patients experience when existential concerns are ignored. Improving doctors' social and communication skills cannot resolve this moral problem, which appears to be intrinsically bound to modern medical practice.

MW 202: Ontario appeal court to hear case about who decides when to remove life support

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Hassan Rasouli's doctors at Sunnybrook Heath Sciences Centre believe he is in a persistent vegetative state and are appealing a Superior Court ruling last month that said if they can't get permission from Rasouli's family to remove him from a ventilator, they must seek consent from Ontario's Consent & Capacity Board. If the court rules in favour of the doctors, it's unlikely other end-of-life cases would go before the Board, says a lawyer involved with the case. "The underlying issue is whether or not doctors have the right to withdraw treatment that they view to be of no benefit to the patient, or in other words, at end of life, futile," said Mark Handelman, who spent a decade adjudicating on the Board.

N.B. Ontario is the only province in Canada with a Consent & Capacity Board, which usually hears a case and issues a ruling in about a week.

MW 201: End-of-life care: A philosophical or management problem?

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The main task of those who worked to improve the situation centered on changing each of those variables, assuming that would do the job. But it has worked to a moderate extent only and the problem is not fully solved. The main omission has been a failure to confront the medical enterprise itself, which believes in endless progress and conducts a war against death. Only a change in those underlying values can bring about further significant change.

Journal of Law, Medicine & Ethics, 2011;39(2):215-223. "The value of life at the end of life: A critical assessment of hope and other factors." Low opportunity cost, weak influence of quality of life in the face of death, the social value of life extension to others, shifting psychological reference points, and hope have been proposed as factors to explain why people apparently perceive marginal life extension at the end of life to have disproportionately greater value than its length.

N.B. The June 2011 issue of Journal of Law, Medicine & Ethics includes several articles related to end of life care. Publication contents page:

MW 200: Family involvement, independence, and patient autonomy in practice

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The influence of the family on the decisions of the competent adult patient has scarcely been discussed in English medical law. Dominated by the bioethical principle of individual autonomy, the law concentrates on the patient and takes an exclusionary stand regarding relatives. The aim of this article is to examine the attitude of English law towards the involvement of relatives when patients make decisions, and to investigate the views and experiences of patients and their relatives in reality. The findings [of this qualitative study] reflect a relational approach to patient autonomy. When making decisions about treatment, patients needed to know that their relatives would support them no matter what they decided. However, exceptional cases which demonstrated substantial familial influence suggest that the law should secure the patient's interest in making their own decisions.

MW 199: Clinical practice guidelines: Psychosocial and bereavement support of family caregivers of palliative care patients

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Most family caregivers will adequately respond to their role and even identify positive aspects associated with their experience. However, a considerable proportion of family caregivers will experience poor psychological, social, financial, spiritual and physical well-being and some will also suffer from prolonged grief. It is clear that many family caregivers have unmet needs and would like more information, education, preparation and personal support to assist them in the caregiving role. There is also a shortage of evidence-based strategies to guide health professionals to provide optimal support whilst the caregiver is providing care and after the patient's death. [The] research team [at the Centre for Palliative Care] ... has developed Clinical Practice Guidelines for the psychosocial and bereavement support of family caregivers of palliative care patients. The guidelines were developed for multidisciplinary health care professionals and clinical services commonly involved in caring for adult patients receiving palliative care in a variety of care sites throughout Australia. The guidelines may also prove valuable for the international palliative care community and for generalist health care providers who may occasionally care for palliative care patients. Download the guideline from (630 KB)

MW 198: Patients with do-not-resuscitate orders fare worse

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About seven in 10 Americans die with such an order, which instructs healthcare workers not to use life-prolonging treatment if a patient's heart or breathing stops. But other situations that aren't necessarily covered in the do-not-resuscitate [DNR] ... orders may also be worth considering, researchers say. Read more…

1. 'High mortality in surgical patients with do-not-resuscitate orders,' Archives of Surgery, published online 18 April 2011.

MW 197: Dartmouth Atlas Project: Hospital care at life's end: A disparity

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The study, which looked at federal data from 2007, the most recent year available, found that 46% of chronically ill patients in the Manhattan hospital region, which also covers most of Brooklyn and Staten Island, were being treated at hospitals when they died, as opposed to dying at home or in hospices or nursing homes. That rate was the highest in the country. The region covering Long Island and Queens was second, with 42%; the Bronx region was third, at 40%; and the New Brunswick, N.J., region was fourth, at 39%. Nationally, 28% of hospitals' chronic patients were being treated at hospitals when they died. Dr. Elliott S. Fisher, a co-author of the new study, said that some of the disparity might be driven by financial incentives for keeping patients in New York-area hospitals while neglecting the true wishes of the patients. Read more…

1. Trends and Variation in End-of-Life Care for Medicare Beneficiaries with Severe Chronic Illness, A report of the Dartmouth Atlas Project, Dartmouth Institute for Health Policy & Clinical Practice, April 2011.

MW 196: National guidance on "last offices": Nurses to lead on care after death

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The guidelines, shared exclusively with Nursing Times, outlines how bodies should be treated, how to communicate with bereaved families, and legal requirements following a patient's death. They have been developed by specialist nurses working with the National Health Service National End of Life Care Programme in response to a lack of training and guidance for the profession on the emotionally challenging work of caring for patients after death. An investigation by Nursing Times last year suggested procedures ... were not carried out properly for more than half of deceased hospital patients. Read more…

MW 195: April 04, 2011, Weighing the merits of 'never-say-die' oncology

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The father lamented their final hours together were tainted by the medical team's vigorous attempts to keep the woman alive. "He said, 'Those buggers were poking and prodding her with needles the day before she died," recalled Prof. Fassbender... "He was very bitter about that." A growing body of thought suggests such assertive treatment is, in fact, often inappropriate for patients facing imminent death from cancer or other terminal diseases. A new Ontario study reveals, however, that cancer patients are increasingly undergoing emergency-department treatment, chemotherapy and other "aggressive" care in the last few weeks of their lives.1 Close to one in four patients studied received potentially aggressive care in their last month... Care of all kinds in the last months of life generally costs the health-care system billions of dollars a year, other research has suggested. The oncologist who led the Ontario study, Dr. Craig Earle ... said hospice beds and palliative services in patients' homes are often not available. He and other experts advocate new government spending on palliative care, designed to lessen pain and discomfort and address psychological and spiritual issues for patients whose illness can no longer be treated. Resources are not the only more…

1. Journal of Clinical Oncology | Online article – 14 March 2011 – 'Trends in the aggressiveness of end-of-Life cancer care in the universal health care system of Ontario, Canada.' Among 227,161 patients, 22.4% experienced at least one incident of potentially aggressive EOL [end of life] cancer care. Multivariable analyses showed that with each successive year, patients were significantly more likely to encounter some aggressive intervention. Aggressiveness of cancer care near the EOL is increasing over time in Ontario, Canada, although overall rates were lower than in the U.S. N.B. Noted in Media Watch dated 21 March 2011.

MW 194, March 28, 2011: A novel approach to hospital palliative care: An expanded role for counselors

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It is unique in that the approach has a strong counseling base in providing the palliative service, rather than major reliance on advance practice nurses or palliative physicians. The Medical Center of Central Georgia employs master's prepared counselors who spend the hours needed to assist families in making difficult end-of-life decisions. The growth of the program over seven years is staggering with the outcomes far exceeding even the predicted volume from the Center to Advance Palliative Care.

MW 193, March 21, 2011: Whose business is dying?

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The home – in all its varying forms – is a place considered 'normal' by its occupants, where ownership of, and control over, its boundaries rests with those considered as subject to the paternalistic practices of conventional approaches to palliative care. By extension, the networks formed by the linking of these homes and their occupants create a community that 'owns' the business of dying amongst its numbers. A model of palliative care that integrates the principles and practices of health promotion and public health is proposed as one approach to normalising the conceptualisation of dying and the responses of communities to their dying members. Whose business is dying?

MW 192, March 14, 2011: Mandatory screening increases palliative care, cuts costs

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The increased use of palliative care services saved the hospital about $700,000 in fiscal year 2008, because of shorter lengths of stay and patients opting for less-heroic care, among other factors. St. John Providence Health System now screens patients admitted to St. John and its other four hospitals for palliative care needs, and is incorporating screening into its electronic health record system. A multi-disciplinary working group developed [and tested] a ... checklist... After a year, they streamlined the checklist down to nine items, any one of which triggered a consult. In 2006, before it was implemented, there were 444 palliative care consults; the number increased to 742 in 2007 and to 952 in 2008. The time from admission to consult dropped from about 9 days to about 6. The success led to a system-wide rollout of palliative care screening, with the nine triggers ... now assessed in patients admitted to the health system's five hospitals.

MW 191, March 07, 2011: Measuring the net benefits of hospice and palliative care: A composite measure for multiple audiences – palliative net benefit

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As a sector, we need to do better, be smarter, and ensure we are delivering a handful of key messages on behalf of the people who benefit from our services. To date, no one single outcome measure has been developed that captures the net benefit of involving hospice or palliative care services. Yet funders are looking for reasons to justify the investment in these services (or, more frighteningly, to disinvest). The benefits from provision and receipt of palliative care should be captured from the four main stakeholders: patients, their caregivers, involved clinical staff, and the health system(s) through which that care is provided. Smith and colleagues explore the issues which are important to caregivers when reflecting back on the death of a loved one.1 Although 14 domains were explored covering the last month of the person's life and one global rating was subsequently assessed, the data make things clear. First, there is wide variation even among bereaved family members about what constitutes quality care at the end of life. Second, the factors identified by caregivers may differ from those identified by patients and health professionals; such differences have been reported before.2 The important contribution by the work of Smith and associates is that it begins to quantify and to weight the relative importance of key aspects of care at the end of life by people who have experienced (as recipients of care themselves from hospice and palliative care services) and provided that care (as caregivers for people who are dying).

1. 'Can we make reports of end-of-life care quality more consumer-focused? Results of a nationwide quality measurement program,' Journal of Palliative Medicine, 2011;14(3):301-307. N.B. Noted in Media Watch dated 7 February 2011.

2. 'Factors considered important at the end of life by patients, family, physicians, and other care Providers,' Journal of the American Medical Association, 2000;284(19):2476-2482.

MW 190, February 28, 2011: Medical, legal and ethical issues of 'Baby Joseph' case, London Health Sciences Centre launches public information campaign

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While medical, legal and ethical support for the best interests of "Baby Joseph" is widespread, the hospital believes that since this has become a public issue, the public has a "right to know" the truth so they can form their opinions based on fact, not innuendo, speculation or untruths. N.B. The Ontario Consent & Capacity Board ruling and report regarding "Baby Joseph" can be found at:

MW 189: February 21, 2011, We've been misled about how to grieve

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The relative told Moules the woman was carrying an urn full of her daughter's ashes everywhere she went; that if you met her for lunch she'd get a table for three; that, in a nutshell, the family was concerned about how she was coping. Sure enough, when Moules later met the client for lunch, they ate with the ashes at the table. "So, are you wondering why I invited you out?" Moules asked. "Oh no, I know," the woman said. "Somebody phoned you, they're worried about me. They think I'm crazy." Moules probed further: "Do you think it's crazy?" she asked. "No," said the woman. "F–k them. This is the last human, physical connection that I have to her and I'll put her down when I'm ready to put her down." For Moules, who now lectures on grief as a nursing prof[essor] at the University of Calgary, the young mother's story helps illustrate the sometimes paradoxical relationship many of us have with the emotions accompanying a loved one's death. "There's all these cultural expectations of grief that are contradictory," she says. "One is, 'Get over it, you should be over it by now!' And the other is, 'What's wrong with you that you aren't continuing to feel it? Didn't you love the person?' And we turn all those judgments inward." read more…

MW 188: February 14, 2011, When to say "yes" and when to say "no": Boundary issues for hospice palliative care volunteers

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Volunteers were asked to indicate whether or not they considered each item (e.g., "lend personal belongings to a patient or family," "agree to be a patient's power of attorney," "attend/go into a patient's medical appointment") to be something they should not do and to indicate whether or not they have ever done it. On the basis of the responses, the authors distinguished between "definite boundary issues" (things volunteers should never do, for example, "accept money from a patient or family"), "potential boundary issues" (things volunteers should stop and think twice about doing, for example, "accept a gift from a patient or family"), and "questionable boundary issues" (things volunteers should be aware of doing, for example, "give your home phone number to a patient or family"). The implications of these findings for training volunteers are discussed and the need for clear and unambiguous organizational policies and procedures to preserve boundaries is stressed. Without clear policies, etc., community-based hospice programs may be putting themselves at legal risk. read more…

MW 187: February 7, 2011, Liverpool Care Pathway: Death row drug fed to dying Scottish pensioners

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Medics use the sedative midazolam as part of a highly controversial "pathway to death" care plan for people judged by doctors to be in the last hours of their lives. But patients' leaders warned ... that the widespread use of the Liverpool Care Pathway (LCP) in Scotland's NHS [National Health Service] is robbing pensioners of the chance of life. They claim that, for some old folk, being put on the LCP is effectively a death sentence. Supporters of the LCP, including the Scottish Government, argue that it is a humane and well thought-out way to make the dying comfortable at the end of life. Crisis Ministers told all Scotland's health boards in 2008 that use of LCP was "good practice." But some senior doctors fear that patients who could recover are wrongly being put on LCP. And they say that once people are on the "pathway to death," the drugs they are given will mask any signs that they are getting better. read more…

MW 186: January 31, 2011, Exploring the dynamics of interdisciplinary palliative care teams in providing psychosocial care: "Everybody thinks that everybody can do it and they can't"

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It is argued that effective team functioning can be enhanced through the development of interdisciplinary team training programs and policies, resources and structures that provide support for the interdisciplinary team model. read more…

MW 185: January 24, 2011, U.S. laws a barrier for advance directives: Study

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In a study of advance directive laws across all U.S. states, researchers found that the documents used in end-of-life planning were written in legalese that the average American would be hard-pressed to understand. And most states, the study found, had practical restrictions that could make it difficult for many people to complete an advance directive. The study comes as Congress debates the future of health care reform, a debate that has included false rumors about "death panels" that would determine which Americans would receive care at the end of life. Among the most affected by existing laws would be people with limited literacy and those in nursing homes or other institutions who do not have family or friends, the researchers report in the Annals of Internal Medicine [see sidebar].1 Advance directives are legal documents that allow people to state their wishes for end-of-life care, in the event they become too sick to make their own medical decisions. One example is a "living will," which spells out the types of life-prolonging measures a person does or does not want – whether, for instance, you want to be put on a ventilator if you cannot breathe on your own, or if you want doctors to attempt resuscitation if your heart stops. A 2007 Harris poll found that about two in five Americans have such living wills. Another type of advance directive is medical power of attorney, where people choose a "proxy" who will make healthcare decisions for them if they cannot do so themselves. In the U.S., states each have their own laws on advance directives. But a common thread is that the laws set up obstacles that could deter people from end-of-life planning, according to the researchers on the new study. read more…

MW 184: January 17, 2011, Palliative caregivers who would not take on the caring role again

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One in 10 people across the community provided hands-on care for someone close to them dying an expected death in the five years before being interviewed. One in 13 former caregivers indicated that they would not provide such care again irrespective of time since the person's death and despite no reported differences identified in unmet needs between those who would and would not care again. A further one in six would only "probably care again." These data suggest that assessment of willingness to care needs to be considered by clinical teams, especially in the elderly. Despite most active caregivers being willing to provide care again, a proportion would not. read more…

MW 183: January 10, 2011, When a death wish is desirable: End-of-life decisions

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The Geelong Hospital senior intensive care doctor put it succinctly when he said: "We can prolong life but [for these people] we cannot restore health." At the risk of appearing to be unfeeling, there's also the issue of cost. Not surprisingly, hospital costs increase proportionately with proximity to death, although it's not as simple as that. Lesley Russell of the Menzies Centre for Health Policy at the University of Sydney and the Centre for American Progress in Washington, DC, reported in early 2009 that in Australia in 2007, end-of-life hospital care averaged about $13,500 per person, with about 40% spent in the last month of life. The biggest costs are incurred caring for people aged 65 to 74. As people age further, hospital costs fall, so for people aged 95 or older hospital costs are less than half those of their younger counterparts. This is because a large majority of people aged 95 or more die outside of hospitals. A critical cost consideration, however, is the estimate that about 10% of all health costs in Australia go to providing procedures that people nearing the end of life don't want. While this shouldn't be seen solely as an economic issue, extending inappropriate care to one person generally delays or denies care to another. It's particularly difficult to accept this when many patients don't want the treatment they're getting. Any ethical assessment of these issues must therefore take this reality into account. People plan for so much in life but when it comes to addressing issues of end-of-life medical treatment and care, they shy away from doing so, either because they don't know how or because they'd rather put it off. But putting it off often results in treatment or heroic medical enterprise, which, given a choice, the patient probably wouldn't want. read more…

MW 182: January 3, 2011, Winnipeg Regional Health Authority report to review end-of-life conflicts

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The 85-year-old died ... before a court could resolve whether the elderly man's Orthodox Jewish beliefs trump guidelines that give doctors the final say on withdrawing life-support. A long-awaited report, slated for release next year, may shed light on that question and put to rest how doctors and patients should resolve conflicts over end-of-life care. Officials [of the Winnipeg Regional Health Authority] launched the review after Golubchuk's eight-month fight to remain alive pitted a patient's right to continue treatment against Winnipeg physicians who argued continuing to care for the elderly man was "tantamount to torture." It's unclear whether the WRHA report will include new guidelines that supersede existing end-of-life guidelines that give doctors the final say. read more…

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