Successful dying: Researchers define the elements of a 'good death'

  

For most people, the culmination of a good life is a "good death," though what that means exactly is a matter of considerable consternation. Researchers at the University of California, San Diego School of Medicine surveyed published, English-language, peer-reviewed reports of qualitative and quantitative studies defining a "good death," ultimately identifying 11 core themes associated with dying well.

The findings are published in the April 2016 issue of the American Journal of Geriatric Psychiatry.

The research team, headed by senior author Dilip Jeste, MD, Distinguished Professor of Psychiatry and Neurosciences and director of the Sam and Rose Stein Institute for Research on Aging at UC San Diego School of Medicine, focused on three groups of stakeholders: patients, family members (before or during bereavement) and health care providers. 

"This is the first time that data from all of the involved parties have been put together," said Jeste, who is also associate dean for healthy aging and senior care at UC San Diego School of Medicine. "Death is obviously a controversial topic. People don't like to talk about it in detail, but we should. It's important to speak honestly and transparently about what kind of death each of us would prefer."

The literature search culled through 32 qualifying studies. It identified 11 core themes of good death: preferences for a specific dying process, pain-free status, religiosity/spirituality, emotional well-being, life completion, treatment preferences, dignity, family, quality of life, relationship with the health care provider and "other." 

The top three themes across all stakeholder groups were preferences for specific dying process, pain-free status and emotional well-being. For other themes, however, different stakeholders put somewhat different levels of emphasis. For example, patients more often cited religiosity/spirituality as important than did family members, who believed dignity and life completion were more critical to a good death. Health care providers tended to represent a middle ground between patients and family members. 

"Clinically, we often see a difference between what patients, family members and health care providers value as most important near the end of life", said first author Emily Meier, PhD, a psychologist at Moores Cancer Center at UC San Diego Health. "Ultimately, existential and other psychosocial concerns may be prevalent among patients, and this serves as a reminder that we must ask about all facets of care that are essential at the end of life."

The bottom line, said Jeste, is "ask the patient."

"Usually, patients know what they want or need and there is relief in talking about it. It gives them a sense of control. I hope these findings spur greater conversation across the spectrum. It may be possible to develop formal rating scales and protocols that will prompt greater discussion and better outcomes. You can make it possible to have a good death by talking about it sometime before."

Choosing to die at home does not hasten death for patients with terminal cancer

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A large study from Japan found that cancer patients who died at home tended to live longer than those who died in hospitals. Published early online in CANCER, a peer-reviewed journal of the American Cancer Society, the findings suggest that oncologists should not hesitate to refer patients for home-based palliative care simply because less medical treatment may be provided.

Most people say that they would prefer to be cared for at home if they were dying, but it's unclear if the care they receive there would be as good as the care delivered at a hospital. Jun Hamano, MD, of the University of Tsukuba in Japan, and his colleagues looked at the issue by prospectively studying 2069 patients, comprising 1582 patients receiving hospital-based palliative care and 487 receiving home-based palliative care. 

The investigators found that the survival of patients who died at home was significantly longer than that of patients who died in hospitals, even after adjusting for patients' demographic and clinical characteristics, as well as other factors.

"The cancer patient and family tend to be concerned that the quality of medical treatment provided at home will be inferior to that given in a hospital and that survival might be shortened; however, our finding--that home death does not actually have a negative influence on the survival of cancer patients at all, and rather may have a positive influence--could suggest that the patient and family can choose the place of death in terms of their preference and values," said Dr. Hamano. "Patients, families, and clinicians should be reassured that good home hospice care does not shorten patient life, and even may achieve longer survival." 

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Article: "A multicenter cohort study on the survival time of cancer patients dying at home or in hospital: Does place matter?" Jun Hamano, Takashi Yamaguchi, Isseki Maeda, Akihiko Suga, Takayuki Hisanaga, Tatsuhiko Ishihara, Tomoyuki Iwashita, Keisuke Kaneishi, Shohei Kawagoe,Toshiyuki Kuriyama, Takashi Maeda, Ichiro Mori, Nobuhisa Nakajima, Tomohiro Nishi, Hiroki Sakurai, Satofumi Shimoyama, Takuya Shinjo, Hiroto Shirayama, Takeshi Yamada, Tatsuya Morita. CANCER; Published Online: March 28, 2016 (DOI: 10.1002/cncr.29844).

Is hospice use alone a good indicator of quality of end-of-life care?

Hospice use is commonly accepted as an indicator of quality of end-of-life care, however, when researchers in the U.S. studied variations in patterns of hospice use between states, they found troubling trends. They discuss the variations in the timing and duration of hospice enrollment and their implications in an article published in Journal of Palliative Medicine, a peer-reviewed journal from Mary Ann Liebert, Inc., publishers. The article is available free on the Journal of Palliative Medicine website until September 20, 2015. 

In "Geographic Variation of Hospice Use Patterns at the End of Life", Shi-Yi Wang, MD, PhD, Yale University School of Public Health (New Haven, CT), and coauthors from Yale Cancer Center, Yale University School of Medicine, Mount Sinai School of Medicine (New York, NY), James J. Peters VA Medical Center (Bronx, NY), and John D. Thompson Hospice Institute for Education, Training and Research, Inc. (Branford, CT), performed a retrospective analysis of Medicare patients who used hospice services during the last 6 months of their lives. 

The researchers compared hospice use data on a state-by-state basis and identified important differences between states in the percentages of very short or very long hospice stays (reflecting late or early enrollment) and of patients leaving hospice before their deaths. Looking at overall, nationwide, hospice use alone as an indicator of quality of end-of-life care could mask issues that require attention.

"Hospice care should be the completion of good care," says Charles F. von Gunten, MD, PhD, Editor-in-Chief of Journal of Palliative Medicine and Clinical Professor of Medicine, Ohio University. "However, as illustrated in this important work, how you use the hospice, analogous to how you take a medicine, is also important. You wouldn't expect benefit from just getting the prescription but not using it appropriately--the same is true for hospice care."

Chemotherapy and quality of life at the end of life

Chemotherapy for patients with end-stage cancer was associated with worse quality of life near death for patients with a good ability to still perform many life functions, according to an article published online by JAMA Oncology.
Physicians have voiced concerns about the benefits of chemotherapy for patients with cancer who are nearing death. An American Society of Clinical Oncology (ASCO) expert panel has called chemotherapy use among patients for whom there was no evidence of clinical value the most widespread, wasteful and unnecessary practice in oncology.

Holly G. Prigerson, Ph.D., of Weill Cornell Medical College, New York Presbyterian Hospital, New York, and colleagues examined the association between chemotherapy use and quality of life near death as a function of patients' performance status, which ranks their ability to perform activities such as be ambulatory, do work and handle self-care.

Chemotherapy use (158 patients were receiving it at study enrollment or 50.6 percent) and performance status were assessed at baseline (a median of about four months before death) and 312 patients with progressive metastatic cancer were followed. The majority of patients were men and the average age of patients was 58.6 years.

Study results showed that chemotherapy was not associated with improved quality of life near death for patients with moderate or poor ability to perform functions. But chemotherapy was associated with worse quality of life near death compared with nonuse of chemotherapy for patients with a good ability to still perform life functions.

"Not only did chemotherapy not benefit patients regardless of performance status, it appeared most harmful to those patients with good performance status. ASCO guidelines regarding chemotherapy use in patients with terminal cancer may need to be revised to recognize the potential harm of chemotherapy use in patients with progressive metastatic disease," the study concludes.

Commentary: Chemotherapy Near the End of Life

In a related commentary, Charles D. Blanke, M.D., and Erik. K. Fromme, M.D., of the Oregon Health & Science University, Portland, write: "These data from Prigerson and associates suggest that equating treatment with hope is inappropriate. Even when oncologists communicate clearly about prognosis and are honest about the limitations of treatment, many patients feel immense pressure to continue treatment. ... At this time, it would not be fitting to suggest guidelines must be changed to prohibit chemotherapy for all patients near death without irrefutable data defining who might actually benefit, but if an oncologist suspects the death of a patient in the next six months, the default should be no active treatment," the author concludes.

Physician characteristics are the strongest predictor of whether a patient will be referred to hospice care

New research from Brigham and Women's Hospital finds that physician characteristics are the strongest predictor of whether a patient will be referred to hospice care.

Individual physicians are widely believed to influence the kind of care their patients receive at the end of life, but to date, there is little scientific evidence to support this belief. New research from Brigham and Women's Hospital (BWH) indicates that the individual physician a patient sees is the strongest known predictor of whether or not he or she will enroll in hospice care, outweighing other known drivers such as geographic location, patient age, race and comorbidities.

These findings are published in the June 2015 issue of Health Affairs.

"We found that the physician a patient sees is the single most important predictor we know of whether or not that patient enrolls in hospice care," said Ziad Obermeyer, MD, a physician researcher in the Department of Emergency Medicine at BWH, Assistant Professor of Emergency Medicine at Harvard Medical School, and lead author of the paper. "This new information provides a clear policy target for improving and advancing the quality of care for patients at the end of their lives."

Researchers used a nationally representative Medicare sample to identify people with a poor-prognosis cancer diagnosis who would have been eligible for hospice care before they died, using a palliative care screening algorithm from a large cancer center, from 2006-2011. The sample included 198,948 patients who, on average, were 78 years-old, 88 percent white and 52 percent male. The 66 percent who enrolled in hospice were more likely to be female, white and live in ZIP codes with higher median incomes, when compared to patients not enrolled in hospice.

Researchers calculated the proportion of a physician's patients that were enrolled in hospice care, as a measure of their propensity to refer their patients to hospice. After controlling for patient, hospital, and geographic factors that predict hospice enrollment, they found that patients would be 27 percent more likely to enroll in hospice if they saw a physician in the top 10 percent of hospice use, compared to a physician in the bottom 10 percent. Additionally, researchers report that large numbers of cancer patients in this cohort were seen in a relatively small group of physicians.

"Our data show that about 10 percent of physicians cared for about half of all patients. This suggests that we can target a small group of physicians with interventions geared towards physician specialty and how often their patients enroll in hospice to improve end of life care," Obermeyer said.

Researchers found that regional factors, greater comorbidity and physician specialty were all significantly associated with the likelihood of hospice enrollment, which generally increased over time. They also noted a new, albeit small effect on the likelihood of hospice enrollment: physicians associated with for profit hospitals were less likely to have patients enroll when compared to physicians affiliated with non-profit hospitals. Obermeyer suggests that further research exploring this link is warranted.

"As an emergency physician, I am often the first person to ask patients about what kind of care they want at the end of their life. In these situations, patients and their families often have only hours to make difficult and complex decisions," said Obermeyer. "As physicians, we need to have these conversations earlier. We need to know what our patients really want at the end of their lives. We need to remove the barriers to having these discussions and give our patients the care they actually want."

Implementing earlier expert palliative care decision making and treatment results in significantly lower costs

Researchers at Trinity College Dublin and Mount Sinai in New York have just published new research which for the first time provides strong evidence on the economic benefits of early palliative care intervention for people with an advanced cancer diagnosis. Their findings were published today in the highly esteemed international peer reviewed Journal of Clinical Oncology.

Previous research has shown the clinical benefits of early palliative care, but this new study robustly demonstrated how early access to expert palliative care decision making resulted in very significant cost reductions of up to 24%. The intervention reduced both the length and intensity of hospital stay for patients with advanced cancer.

The researchers from Trinity's Centre for Health Policy and Management and Mount Sinai's Icahn School of Medicine, led by Peter May, HRB Economics of Cancer Fellow at Trinity, studied over 1000 patients' pathways of care in five major US hospitals and looked at costs associated with their care based on whether they saw a specialist palliative care consultation team or received standard hospital care.

They found that an intervention within six days was estimated to reduce costs by 14% compared to no intervention, and an intervention within two days led to a 24% reduction in cost of hospital stay.

Lead author of the study, Peter May from Trinity said: "Despite the known clinical benefits of earlier palliative care, there was little evidence on the association between treatment timing and economic benefits. Our findings show that alongside proven clinical benefits and outcomes for patients and their families there are also cost savings for the health system; a very important consideration in the context of an aging population and changing patterns of disease."

"It is also important to recognise that palliative care is not only for patients at end of life but can have substantial benefits for many patients living with serious illness. We will now look to apply our research findings to the Irish setting. Across Ireland there are excellent palliative care services for people living and dying with serious illness but there remains a high level of unmet need. High quality research is essential to improving understanding of the potential benefits of palliative care for patients and their families, and for the wider health system."

In this study the specialist palliative care consultation was conducted with a specialist-led interdisciplinary team that assists in the treatment of seriously ill patients through identification and treatment of pain and other symptoms, clarifying treatment options, establishing goals of care and advance plans, and helping patients and family members select treatments that match their goals.

Usual care comprised each individual hospital and service approach to routine assessment of pain and other symptoms, function, nutrition, sleep and emotional concerns.

Hospice use linked to fewer depressive symptoms for surviving spouses

Spouses of patients receiving hospice for three or more days more frequently reported reduced depression symptoms, compared to surviving spouses of patients who did not receive hospice, according to a study led by researchers at the Icahn School of Medicine at Mount Sinai published online today in JAMA Internal Medicine.

This is the first national study to examine depressive symptoms as an outcome for spouses of people with all types of serious illnesses that used hospice care, which is designed to improve quality of life as opposed to offering "curative" disease treatments. Until now, studies demonstrating the benefits of hospice use on caregivers have been largely limited to cancer patients and their families, but hospice use has increased among those with other life-limiting illnesses. Currently, forty-five percent of terminally ill patients in the U.S. die while receiving hospice care -- an increase of more than 20 percent over the past decade.

After matching the sample of hospice users to a similar group that did not receive hospice, the research team found that improvement in depressive symptoms was more common among those who had used hospice, a benefit that was even more pronounced a year after a spouse's death. It is unknown which specific aspects of hospice care are associated with improved symptoms for spouses.

"We know hospice provides high quality care to patients, but now we're also seeing a benefit for spouses," said Katherine Ornstein, PhD, MPH, Assistant Professor of Geriatrics and Palliative Medicine at the Icahn School of Medicine at Mount Sinai and lead author of the study. "If we want to understand the impact of hospice care, we should consider the potential benefit not just to the patient, but to the caregiver, and perhaps, the entire family and social network. We need to remember that care near the end of life affects not only patients, but also their loved ones."

Researchers analyzed data from 1,016 deceased patients and their surviving spouses using the Health and Retirement Study (HRS), a national sample of adults over age 50 linked to Medicare claims. Surviving spouses were then followed through bereavement up to two years after death. Hospice services included medical services, symptom management, spiritual counseling, social services and bereavement counseling delivered by an interdisciplinary team of professionals for patients with a prognosis of six months or less to live and who agree to forego curative treatments.

"Although our research suggests that hospice may help alleviate depression symptoms among some spouses, we also found that the majority of bereaved spouses have increased symptoms of depression overall compared to earlier time points," said Amy Kelley, MD, Assistant Professor of Geriatrics and Palliative Medicine at the Icahn School of Medicine, and senior author of the study. "Additional support is needed for families and caregivers throughout the often long course of serious illness. We need to promote the high quality caregiver support and bereavement services offered in hospice and expand access to palliative care for people who are not hospice eligible."