Global Palliative Care News Archive 2013, January - June

MW 312: Many cancer patients expect palliative care to cure

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"Radiation therapy can be used to relieve symptoms caused by metastatic lung cancer, such as pain from bony metastases, shortness of breath from lung tumors, or neurologic symptoms, such as weakness, from brain metastases," said the study's lead author, Dr. Aileen Chen of the Dana-Farber Cancer Institute in Boston. Patients with metastatic lung cancer usually live less than a year, she told Reuters, and their radiation treatments are intended to improve quality of life for the time that remains, so Chen was surprised that so many patients believed they would cure them. The study included 384 people who were diagnosed with incurable lung cancer between 2003 and 2005 and were receiving radiation therapy. The patients answered questions about their expectations of the therapy. Overall, 64% did not understand that radiation was not at all likely to cure them. view source »

1. 'Expectations about the effectiveness of radiation therapy among patients with incurable lung cancer,' Journal of Clinical Oncology, 17 June 2013. Although patients receiving radiation therapy for incurable lung cancer believe it will help them, most do not understand that it is not at all likely to cure their disease. view source »

MW 311: End-of-life care and cost: Dartmouth Atlas' puzzling findings

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The results were not consistent across all hospitals or regions of the nation, of course. By our way of thinking, this constitutes progress, in the sense that a good death is one consistent with the values of the life it brings to an end. But, of course, while the quality of a patient's final days is paramount, it is not the only consideration for a bloated health care system like America's. The theory has long been that since so much spending occurs in the context of aggressive medical treatment at the end of life, reducing the hospital stays of dying patients would lead to lower costs. That makes sense, but what's puzzling about the Dartmouth Atlas report is that despite more use of hospice and less dependence on hospitalization at the end of life, "Medicare spending per patient during the last two years of life rose from $60,694 to $69,947, a 15.2% increase during a period when the consumer price index rose only 5.3%." The explanation offered by David Goodman, one of the study's principal investigators, is that the fee-for-service model is to blame, because doctors are paid according to the volume of care they provide, encouraging them to provide more services. The assumption is that once the health care system shifts toward rewarding providers for keeping people healthy rather than treating them when they are sick, the cost issue will be contained. view source »

MW 310: We need an alternative to The Liverpool Care Pathway for patients who might recover

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This seems to be what has happened with The Liverpool Care Pathway. It was designed to help those providing care for terminally ill patients who are in their last days of life. The pathway is now being used for patients who may be in their last days or weeks of life but for whom there remains a chance of recovery. Is this appropriate? view source »

MW 309: Towards a social model of end-of-life care

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The social work profession is well placed to draw upon its values, culture and experience (particularly from the service user movement) and to get involved in developing new models of end-of-life care. This paper argues the benefits of community engagement through network mobilisation. view source »

MW 308: U.S. support for euthanasia hinges on how it's described

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At the same time, far fewer – 51% – support it when the process is described as doctors helping a patient "commit suicide." Gallup's question with the softer description of euthanasia – calling it "ending a patient's life by some painless means" – also specifies that both the patient and his or her family requested it. The "suicide" version says the patient requests assistance from a doctor, without referencing other family members. view source »

N.B. The authors of 'Confusion between euthanasia and other end-of-life decisions: Influences on public opinion polls,' Canadian Journal of Public Health, 2007;98(3):235-238, observed that "public opinion polls on euthanasia" should be interpreted in the light of the wording of the question. "Education of the population concerning euthanasia," and other end-of-life decisions, would be an important prerequisite to engage in public debate concerning the legalization of euthanasia. view source »

MW 307: Creating a successful, sustainable structure for a national not-for-profit hospice provider

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Today's two largest investor-owned hospice providers, Gentiva and Vitas, are themselves being challenged by a number of other investor-owned organizations that are expanding through an aggressive strategy of buying and merging smaller local and regional for-profit operators. In the next three to five years, Caring Foundations believes this strategy likely will result in the formation of an additional two to five large national hospice chains, all of which will be investor-owned companies, each of which will rival or exceed Gentiva and Vitas in size. That handful of players then will be poised to dominate the entire hospice field. Caring Foundations believes that, in such an environment, the sustainability of today's community-based, not-for-profit hospice provider model is unlikely. view source »

MW 306: Patient and family experiences of palliative care in hospital:  What do we know? An integrative review

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They are often the setting where a life-limiting diagnosis is made and where patients present when symptoms develop or when they are not well managed. Understanding the experiences of hospital admissions for people with a life-limiting illness and their families is essential in understanding the role acute hospitals play in providing palliative care. This review has identified that, largely as a result of study design, our knowledge of patient and family experiences of palliative care in an acute hospital remains limited to discrete aspects of care. Further research is required ... taking into account all aspects of care including potential benefits of hospital admissions in the last year of life. view source »

Of related interest:

§ Journal of Pain & Symptom Management | Online – 15 May 2013 – 'Ontario hospitals are not using palliative care performance indicators in their balanced scorecards.' No abstract available. view source »

§ Palliative & Supportive Care | Online – 13 May 2013 – 'Do residents need end-of-life care training?' Physicians continue to relinquish end-of-life care to ER staff and palliative care consultants. Exploring unfounded and preconceived fears associated with hospice referral needs to be integrated into the curriculum, to prepare future generations of physicians. view source »

MW 305: Religious support tied to intensive end-of-life care

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The report's lead researcher said that finding was "quite the opposite" of what her team was expecting – in part because of evidence that spiritual support coming from within a patient's medical team leads to less aggressive care and more use of hospice. In the new study, spiritual patients who reported high levels of support from their religious communities were two to three times more likely to receive aggressive end-of-life treatment than those who got less support. However, spiritual support from doctors, nurses and chaplains was tied to a 77% drop in aggressive interventions, consistent with past research. "The spiritual supporters that are integrated into the medical team, knowing the diagnosis of the patient and where things are, are much more able to see the bigger picture of where someone's illness is heading," said Dr. Tracy Balboni, from the Dana-Farber Cancer Institute in Boston. She told Reuters the new findings point to a need for more collaboration between religious communities and medical teams – so a patient's religious supporters understand the "medical realities" of terminal cancer. view source »

1. 'Provision of spiritual support to patients with advanced cancer by religious communities and associations with medical care at the end of life,' JAMA Internal Medicine, 6 May 2013. Patients [i.e., study participants] reporting high spiritual support from religious communities (43%) were less likely to receive hospice, more likely to receive aggressive end of life measures, and more likely to die in an ICU. view source »

From the archives (noted under 'Worth Repeating' in Media Watch, 10 December 2012):

§ Journal of the American Medical Association, 2009;301(11):1140-1147. 'Religious coping and use of intensive life-prolonging care near death in patients with advanced cancer.' To the author's knowledge, this is the first study to examine the influence of any religious factor on medical care received near death, and it is novel in demonstrating that positive religious coping is associated with receipt of aggressive end-of-life care. view source »

MW 304: Palliative and end-of-life care: Where are we now?

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Everyone is entitled to a "decent or good death," the committee wrote, one without avoidable suffering, a death that's in line with patients' and families' values and "reasonably consistent with clinical, cultural, and ethical standards." Now, 16 years later, a new IOM committee ... has been convened.1 The Committee on Transforming End-of-Life Care ... will take input from professionals and the public and issue a new report within 18 months. The goals named in the 1997 report might sound like the standard of care in this country, especially since the establishment of the modern hospice movement in the 1970s. So why is a new report needed? Physician Christine Cassel said ... that health care has become increasingly aggressive in promoting lifesaving treatments, with hospitals erecting "huge glossy buildings" funded by technology companies, but "nobody puts up a billboard outside their academic medical center saying, 'We're the best place to die.' It's very hard to celebrate that." A part of the committee's task ... will be to discern how to transform the current "value equation" so that institutions place as much emphasis on the patient's and family's experience of death and dying as they do on saving lives. view source »

1. Committee on Transforming End-of-Life Care, Institute of Medicine, website: view source »

MW 303: Physicians debate whether patients need to know they're dying

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But physicians have not ceased debating one of the stickiest and most universal ethical quandaries of medical practice: How, when and why does one inform a patient that he or she is dying? The latest evidence of that ongoing discussion was published in the British Medical Journal.1,2 The latest question in the journal's 'Head to Head' feature, "Do patients need to know they are terminally ill?," essentially pits one side's reasonable arguments that "we're all dying" and "you never really know when and of what a patient will die" against another side's equally compelling assertions that "knowledge allows better decisions" and "a patient can still have hope – to live to see a daughter married or achieve a cherished goal or to die a peaceful death at home." Either way, the two sides ... appear to converge on one key rule: Patients whose lives will probably be limited or ended by a disease deserve a forthright explanation of what treatment is available and what it probably would, and would not, accomplish if undertaken. Given that this is a matter of consensus, the difference seems to come down to how forcefully a doctor should press the point when a patient seems unwilling to face the realities of his or her diagnosis. view source »

1. 'Do patients need to know they are terminally ill? No.' Patients do not need to be told that they are terminally ill. However, this does not mean we should pretend we can cure them of incurable illnesses or that we should withhold prognostic information from those who want it. But insisting on prognostic disclosure to facilitate "patient choice" about end of life care is a failed model for medical decision making that creates more suffering than it relieves. view source »

2. 'Do patients need to know they are terminally ill? Yes.' Patients have the right to make informed decisions about their healthcare. Informed consent, and the process of balancing risks and benefits of treatment, is a fundamental ethical principle. This principle is no less relevant for a patient with terminal illness, for whom an awareness of the incurable and life limiting nature of their underlying condition is essential to decision making. view source »

MW 302: Should palliative care patients' hope be truthful, helpful or valuable? An interpretative synthesis of literature describing healthcare professionals' perspectives on hope of palliative care patients

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2) functional perspective – hope as coping mechanism should help patients, and professionals focused on fostering hope; and, 3) narrative perspective – hope as meaning should be valuable for patients, and healthcare professionals focused on interpreting it. Healthcare professionals who are able to work with three perspectives on hope may improve their communication with their palliative care patients, which leads to a better quality of care. view source »

MW 301: What's in a name: Is the moniker 'palliative care' too loaded?

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A telephone survey of 169 patients with advanced cancer found those randomized to hear the term "supportive care" instead of "palliative care" rated their understanding, overall impressions and future perceived need for those services significantly higher. In contrast, there was no significant difference in outcomes when patients heard either a "patient-centered" or "traditional" description of palliative/supportive care services, Rachael Maciasz said at the recent annual meeting of the American Association of Hospice & Palliative Medicine. "It may be that "palliative care" is so loaded with advanced cancer patients because of family members' or friends' experiences with this in the past that (they think) their family member is going to die," she said. "Perhaps what comes after that, no matter how you describe it, you can't change that impression." view source »

MW 300: Where do people die? An international comparison of the percentage of deaths occurring in hospital and residential aged care settings in 45 populations, using published and available statistics

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Of 21 populations reporting deaths of older people, a median of 18% died in residential aged care, with percentages doubling with each 10-year increase in age, and 40% higher among women. This place of death study includes more populations than any other known. In many populations, residential aged care was an important site of death for older people, indicating the need to optimise models of end-of-life care in this setting. For many countries, more standardised reporting of place of death would inform policies and planning of services to support end-of-life care. view source »

MW 299: We need to refocus end of life care as a health priority

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As the number of people dying and the proportions of those who have multiple morbidities increase, so the need to rethink end of life care becomes more urgent. In rethinking such care, we are now aided by a growing evidence base, which gives us a clear picture of what people want and what they get from end of life care. 'Death and Dying' brings together data previously published elsewhere, much of which is available via the Marie Curie End of Life Care Atlas.2,3 The Atlas has been developed to help Clinical Commissioning Groups and others identify gaps and differences of experiences across all end of life care services. It enables commissioners to see how their area compares, to address unmet needs and improve care for all. 'Death and Dying' draws on recently published data from the Atlas, the VOICES Survey of the Bereaved People, the Nuffield Trust's reports on social care at the end of life and the independent evaluation of the Marie Curie Nursing Service.4,5 What is new is the analysis that explores what this evidence tells us about current services and needs. view source »

1. 'Report of the Mid Staffordshire NHS Foundation Trust Public Inquiry,' February 2013. [Noted in Media Watch, 11 February 2013 (p.5)] view source »
2. 'Dying and Death,' Marie Curie Cancer Care, February 2013. [Noted in Media Watch, 18 February 2012 (p.4)] download pdf 55 KB
3. Marie Curie End of Life Care Atlas: view source »
4. 'National Bereavement Survey, 2011,' Office for National Statistics, July 2012. [Noted in Media Watch, 9 July 2012 (p.4)] download pdf150 KB
5. 'The impact of the Marie Curie Nursing Service on place of death and hospital use at the end of life,' Patterns of Care at the End-of-Life Project, Nuffield Trust, November 2012. [Noted in Media Watch, 19 November 2012 (p.7)] view source »

MW 298: A prospective study of family conferences: Effects of patient presence on emotional expression and end-of-life discussions

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Patients [in this study] verbalized distress frequently (73%). Primary caregiver's verbal expression of emotional distress was high (82%), but not significantly affected by the patient presence. Verbal expressions of emotional distress by other family members were more common when patients were absent (87%) than when present (73%). Questions concerning advance directives (21%), symptoms anticipated at death (31%), and caregiver well-being (29%) were infrequent. Patient presence was significantly associated with increased discussions regarding goals of care and decreased communication concerning prognosis and what symptoms dying patients may experience. There was a high frequency of expression of emotional distress by patients and family members in FCs. Patient participation was significantly associated with decreased verbal emotional expression by family members but not the primary caregiver and was associated with fewer discussions regarding the prognosis and what dying patients may experience. view source »

MW 297: Families may gain from observing CPR

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But a new study, the largest rigorous trial on this issue to date, has found that family members who observed resuscitation efforts were significantly less likely to experience symptoms of post-traumatic stress, anxiety and depression than family members who did not.1 The results ... applied regardless of whether the patient survived; most did not, since frequently patients in such dire condition cannot be saved. The study, which involved 570 people in France whose family members were treated by emergency medical teams at home, also found that the presence of relatives did not affect the results of cardiopulmonary resuscitation, did not increase stress on physicians or other members of the medical teams, and did not result in legal claims. view source »

1. 'Family presence during cardiopulmonary resuscitation,' New England Journal of Medicine, 14 March 2013. view source »

Of related interest:

The New York Times | Online – 14 March 2013 – 'New data to consider in DNR decisions.' …only 18 to 20% of older patients in hospitals who suffer cardiac arrest end up leaving the hospital alive. But that is an improvement from years past, when survival rates were even more abysmal. What has not been clear is what happened to older hospital patients who left the hospital after a cardiac arrest.1 view source »

1. 'Long-term outcomes in elderly survivors of in-hospital cardiac arrest,' The New England Journal of Medicine, 14 March 2013. view source »

MW 296: Generalist plus specialist palliative care – creating a more sustainable model

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The field grew out of a hospice tradition in which palliative treatment was delivered only at the end of life, but its role has expanded so that palliative care specialists now also provide palliative treatment in the earlier stages of disease alongside disease-directed medical care, improving quality of care and medical decision making regardless of the stage of illness. In an era when health care organizations [in the U.S.] may soon receive capitated payments for all services that patients receive, many are investing in palliative care to improve overall value. Although this trend has fostered rapid growth of the palliative care specialty, the current model adds another layer of specialized care for seriously ill patients on top of an already complex, expensive health care environment. As in any medical discipline, some core elements of palliative care, such as aligning treatment with a patient's goals and basic symptom management, should be routine aspects of care delivered by any practitioner. Other skills are more complex and take years of training to learn and apply, such as negotiating a difficult family meeting, addressing veiled existential distress, and managing refractory symptoms. Now that the value of palliative care has been recognized, specialists are sometimes called on for all palliative needs, regardless of complexity. view source »

MW 295: Encouraging and discouraging talk about illness progression, dying and death: A systematic review of communication literature

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2,203 publications were initially identified. Of the 18 meeting the inclusion criteria, five were social science, five clinical and eight linguistics publications. Strong evidence (11/18) indicates hypothetical questions are effective in encouraging people to address feelings and plans for uncertain and difficult futures. Moderate evidence (5/18) indicates that another way to create such opportunities entails using cautious, euphemistic language; and that this provides distinctive opportunities for people to deflect or avoid the topic. Moderate evidence (3/18) indicates that people often steer such conversations towards more optimistic statements, which tends to stop further talk about difficult events. Social-science, linguistic and clinical evidence is available to inform this skilled, often problematic element of care. There are different ways to provide opportunities to discuss feelings and plans in relation to end of life. view source »

MW 294: Disparities in end-of-life care: A perspective and review of quality

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In this context, there is a need to understand how such resources are utilized and how utilization decisions are made. Variation in the use of EOL resources and decisions is attributed to patient variables, hospital factors, and the socio-cultural platform in which both patient and provider exist. This article focuses on patient variables and employs a systematic approach to advance our understanding of factors that influence EOL care. view source »

Of related interest:

International Journal of Health Planning & Management | Online – 18 February 2013 – 'Health care expenditures from living longer – how much do they matter.' Analysis shows that life extension costs cancel out savings from reducing morbidity. Users of economic evaluations may use this finding to estimate the bias when life extensions costs are not included in the analysis. view source »

MW 293: Hospice closing, but mission was accomplished

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Her funny idea was hospice, the revolutionary notion that people who are dying should be treated with as much care and dignity as those who are living. That death is a part of life – in fact, it is what makes life worth living. Right to the end. Back then, most doctors – people who are trained to save lives – felt that acceptance of a patient's terminal illness was an admission of failure. Almost nobody wanted to wave that white flag. So Howell ran it up her own flagpole. She spearheaded the creation of San Diego Hospice in 1977, then helped steer the non-profit into one of the largest and most innovative programs of its kind in the nation. There at the beginning, and now, at age 89, there at the end. San Diego Hospice is bankrupt and scheduled to close soon, its budget decimated in a crackdown on Medicare reimbursement practices. Hospice care is supposed to last at most six months; some cases there lasted more than a year. view source »

CALIFORNIA | San Diego Business Journal – 14 February 2013 – 'San Diego Hospice closes doors... view source »

N.B. San Diego Hospice press release: view source »

MW 292: End-of-life care often still hectic, aggressive

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However, between 2000 and 2009 there was also an increase in the proportion of people admitted to the intensive care unit in the month before they died – suggesting there hasn't been a general trend toward less aggressive end-of-life care. Researchers led by Dr. Joan Teno at Warren Alpert Medical School of Brown University in Providence, Rhode Island, reviewed Medicare claims data for more than 800,000 seniors who died in 2000, 2005 or 2009. During that span, the proportion of people who died in the hospital fell from about 33% to 25%. Use of hospice…rose from 22% to 42% at the time of death. That finding is in line with research from the Centers for Disease Control & Prevention, which showed an increase in the number of elderly people dying at home between 1989 and 2007. But Teno's team also saw a bump in the number of transitions between healthcare settings made in the last three months or three days of life. And the proportion of seniors with an ICU visit during their final month rose from 24% to 29%. view source »

1. 'Change in end-of-Life care for Medicare beneficiaries: Site of death, place of care, and health care transitions in 2000, 2005, and 2009,' Journal of the American Medical Association, 2013; 309(5):470-477. view source »

N.B. Editorial in this issue of the journal: 'Changes in end-of-life care over the past decade: More not better.' view source »

MW 291: Can palliative care reduce futile treatment? A systematic review

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A patient receiving treatment inspired by curative intent during the end stage of their life is potentially exposed to medical futility. Of 1964 sources identified, only 12 measured both cost and an appropriate quality outcome. Evidence supported existing research that palliative care interventions generally reduce health service costs. Evidence of concurrent improvement in quality-of-life outcomes was limited; little available evidence derives from randomised trial designs. Small sample sizes and disparate outcome measures hamper statistical assessments. view source »

Extract from BMJ Supportive & Palliative Care article

Evidence that palliative interventions cut costs, without reducing quality of life, by minimising futile medical acts is limited. Further research, including both observational studies and controlled trials, should be conducted to collect empirical data in this field.

MW 290: Capturing activity, costs, and outcomes: The challenges to be overcome for successful economic evaluation in palliative care

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The challenges for the palliative care community are to a) demonstrate the cost effectiveness of its interventions in comparison to other health services; and, b) provide evidence that the resources currently allocated are being used efficiently. Health economic evaluation can be conducted to support this. In this paper different economic approaches to evaluating health care services are introduced. Providing examples from (home based) palliative care the authors consider the opportunities to progress this work. They also describe the related challenges of capturing activity, costs, and outcomes. Although the very nature of this area of care presents unique methodological challenges that will need to be overcome, appropriate analyses will allow comparisons across the wider health sector and strengthen the argument for palliative care services. view source »

Of related interest:

INTERNATIONAL JOURNAL OF PALLIATIVE NURSING, 2013;19(1):3. "Speaking truth to power: A challenge for the field of palliative care." There is a widespread belief that everything is political. The suggestion is debatable, but everyone seems to have an opinion about issues that affect people with life-limiting illness, including how things could or should be. view source »

MW 289: "You should not have to be dying to get this care", Learning the right lessons from hospice

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Instead of trying to understand why hospice is growing in popularity, Medicare is instead making it harder to enrol. As often happens in its regulation of health care, Medicare is focusing on abuses. And make no mistake, those concerns are real when it comes to the $14 billion hospice business. Providers have figured out clever ways to game Medicare, which pays for 84% of all hospice care. By focusing on fraud, Medicare is missing the bigger point. Hospices are doing something right and they are doing it in a way patients and their families really like. Instead of trying to make coordinated, comfort-based care fit into the limits of the hospice box, policymakers should be figuring out how to take what hospice does well and expand it through the rest of the health system. view source »

MW 288: Interventions concerning competence building in community palliative care services

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The purpose of this literature review is to examine experiences with interventions regarding the development of competencies within community palliative care services – in other words, at the individual work places. The review of the literature identified 15 publications which dealt with interventions regarding education and competence building. The publications represent individual studies, only two of which were controlled. All conclude that competence building has a positive effect according to the professionals. It is unknown whether or how patients and relatives feel a positive effect from the interventions just as it is unknown how the development of competencies has actually led to a more developed practice. view source »

MW 287: Better, if not cheaper, care

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If we don't address these costs, the story goes, we can never control health care inflation. Wrong. Here are the real numbers. The roughly 6% of Medicare patients who die each year do make up a large proportion of Medicare costs: 27 to 30%. But this figure has not changed significantly in decades. And the total number of Americans, not just older people, who die every year – less than 1% of the population – account for much less of total health care spending, just 10 to 12%. The more important issue is that just because we spend a lot on end-of-life care does not mean we can save a lot. We do know that costs for dying patients vary widely among hospitals, which suggests that we can do better. And yet no one can reliably say what specific changes would significantly lower costs. There is no body of well-conducted research studies that has proved how to save 5, 10, much less 20%. Recent studies find that hospice may reduce costs in the last year of life for cancer patients by 10 to 20%. But they find no savings from hospice care for patients who die of other conditions, like emphysema or heart failure. No one is sure why hospice care doesn't save more. It may be because patients are enrolled in hospice care too late, or because hospice services themselves are labor-intensive and not cheap.

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