Video may help heart failure patients choose level of end-of-life care

A picture may be worth a thousand words. Patients with advanced heart failure who watched a short video depicting different levels of end-of-life care were more likely to choose comfort care over invasive care that could prolong their life, according to new research in the American Heart Association's journal Circulation.

Researchers said patients who watched the video were also more knowledgeable about care levels and likely to discuss end-of-life care with their doctor -- evidence that the video's goal of supporting, rather than replacing, doctor/patient communication was being achieved.

"Because the course of heart failure is uncertain, in part because of improved therapies, doctors may be reluctant to initiate a conversation with their patients about advance care planning," said Areej El-Jawahri, M.D., study lead author, director of the bone marrow transplant survivorship program at Massachusetts General Hospital Cancer Center and a member of the Video Images of Disease for Ethical Outcomes (VIDEO) Consortium. "We found that when patients were better informed, it's easier for them and their doctors to discuss end-of-life issues."

Heart failure is a chronic condition in which the heart struggles to supply the body with enough blood to remain healthy. Those with advanced heart failure typically experience shortness of breath and fatigue with little or no activity, and their care often requires hospitalization.

In this study, 246 advanced heart failure patients (average age 81) from seven U.S. hospitals were given a verbal description of three levels of care they could receive at the end of their life:

• life-prolonging care, including CPR and having a tube inserted into their windpipe and being placed on a breathing machine;
• limited care, including intravenous therapy and hospitalization, but not CPR or a breathing machine; and
• comfort care, typically delivered at home with a focus on quality of life, but including hospitalization if required for symptom relief.

Half of the participants were then randomly assigned to watch a six-minute video narrated by a physician with images depicting the three levels of care. These participants also received a checklist that encouraged them to discuss end-of-life care with their doctor.

Researchers found:

• 51 percent those who watch the end-of-life care video preferred comfort care, compared to 37 percent of who did not see it;
• 68 percent of video viewers wanted to forgo CPR, compared to 35 percent of non-viewers;
• 77 percent of video viewers wanted to forgo a breathing machine, compared to 48 percent of non-viewers;
• 25 percent of video viewers chose limited care, compared to 22 percent of non-viewers;
• 2 percent of video viewers were uncertain of their preference, compared to 7 percent of non-viewers; and
• 61 percent of video viewers discussed their end-of-life choices with their physicians within 3 months, compared to 15 percent of non-viewers.

In addition, those who watched the video scored significantly higher on a test of their knowledge of care levels.

"In this case, a picture is worth a thousand words," El-Jawahri said, "After watching the video, patients have a much better sense of what procedures and therapies align with their own preferences and values."

Authors were aware that the video might unintentionally sway patient decisions, so the video's development had extensive review by healthcare professionals and heart failure patients to ensure an accurate, neutral presentation of the levels of care. El-Jawahri noted that 96 percent of participants who viewed the video said they would recommend it to others and that only 1 percent said they were "not comfortable" watching the video.

An important study limitation was the disproportionate number of white participants. "We know from multiple studies across different medical areas that racial and ethnic minorities tend to desire more aggressive care at the end of life, so these results may not generalizable," El-Jawahri said.

Researchers believe that their approach to supporting patient's end-of-life decisions through informative videos can be inexpensively offered to patients everywhere.

Asking patients where they want to die when admitted to hospice linked to fewer hospitalizations

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Patients who were asked where they wanted to die upon entering hospice had lower rates of hospitalization at the end of life, as did those in hospices that monitored symptoms more frequently, according to a new study led by researchers at the Icahn School of Medicine at Mount Sinai. Published online today in the July issue of the journal Medical Care, the study also determined that for-profit hospices have persistently high rates of hospitalization regardless of preferred practice implementation.

While the Affordable Care Act requires hospices to report quality measures across a range of processes and practices, this is the first study to examine the link between hospice preferred practices and outcomes for patients receiving hospice care. 

Researchers tracked a cohort from the National Hospice Survey of 149,814 Medicare beneficiaries enrolled in a national random sample of 577 hospices across the United States and followed them from 2008-2011 until their death. Findings determined that while the hospitalization of patients after being enrolled in hospice varied considerably, two of the six preferred practices examined (namely assessing patient preferences for site of death and monitoring symptoms at least every dew days) were associated with significantly lower hospitalization rates of patients following hospice enrollment. The other four examined preferred practices were not associated with hospitalization-based outcomes.

"The substantial hospice level variation in hospitalization rates identified in this study underscores the need to better understand the drivers of inter-hospice variation, to develop quality measures based on these determinants, and to create incentives for high performance on quality measures to improve the experiences of patients and families at the end of life," said Melissa Aldridge, PhD, MBA, Professor of Geriatrics and Palliative Medicine, Icahn School of Medicine at Mount Sinai. 

Hospice services focus on palliative rather than curative care and include 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. Forty-five percent of terminally ill patients in the U.S. currently die under hospice, and its use has grown by more than 20 percent over the past decade. It is covered by Medicare, Medicaid, Managed Care (including HMOs), and most private insurances. 

Meanwhile, researchers found that hospitalization rates at for-profit hospices were higher regardless of preferred practice implementation--suggesting that it is the organization of the hospice itself in terms of ownership that likely drive policies and decisions regarding hospitalization. 

"Our results highlight the need to better understand the practices of for-profit hospices where the pattern of high hospitalization of patients is persistent," said Dr. Aldridge. "Our data also suggests that the hospitalization of individuals who had enrolled with for-profit hospices may be a means of shifting costs of care from the hospice organization to Medicare, but more research is necessary to explore this issue. In particular, we need to understand from the perspective of patients and their caregivers, why hospitalizations at the end of life occur after hospice enrollment."

Palliative, hospice care lacking among dying cancer patients

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Medical societies, including the American Society of Clinical Oncology, recommend that patients with advanced cancer receive palliative care soon after diagnosis and receive hospice care for at least the last three days of their life. Yet major gaps persist between these recommendations and real-life practice, a new study shows.

Risha Gidwani, DrPH, a health economist at Veterans Affairs Palo Alto Health Economics Resource Center and a consulting assistant professor of medicine at the Stanford University School of Medicine, and her colleagues examined care received by all veterans over the age of 65 with cancer who died in 2012, a total of 11,896 individuals.

The researchers found that 71 percent of veterans received hospice care, but only 52 percent received palliative care. They also found that exposure to hospice care differed significantly between patients treated by the U.S. Department of Veterans Affairs and those enrolled in Medicare. In addition, many patients who received palliative care received it late in their disease's progression rather than immediately following diagnosis, as recommended by ASCO.

Gidwani is the lead author of the study, which will be published online May 27 in the Journal of Palliative Medicine. The senior author is Vincent Mor, PhD, a professor of health services, policy and practice at Brown University.

Differences between hospice, palliative care

Hospice and palliative care are often confused, but they are two distinct services, Gidwani explained. Palliative care is intended to alleviate symptoms and improve quality of life, and is appropriate for all patients with serious illness, not just those who are at the end of life. Conversely, hospice care is end-of-life care, which can also provide social support for family members. Physicians can recommend hospice care only if they believe the patient has fewer than 180 days to live.

"The main lesson learned is we need to improve exposure to palliative care, both in terms of how many patients receive it and when they receive it," Gidwani said.

The team's analysis of palliative care focused on care provided by the VA because palliative care is not coded consistently in Medicare. However, the researchers could examine hospice care in both environments. When they compared the timing and provision of hospice care between patients treated by the VA and those who received care paid for by Medicare, they discovered differences that could not be explained by cancer types. For example, patients receiving VA care were less likely to receive hospice care for the minimum recommended three days compared with those in Medicare or in other contracted care paid for by VA. VA patients first received hospice care a median of 14 days before death, compared with patients in VA-contracted care who entered hospice a median of 28 days before death.

"Ideally, there shouldn't be any difference in timing of this care," Gidwani said. "Patients should receive a service based on their clinical need, not due to health-care system factors."

Hospice care policies differ

Interestingly, Medicare and the VA have different policies on the use of hospice care; VA cancer patients can continue receiving curative treatment while in hospice care, but Medicare patients must stop any chemotherapy or radiation before beginning hospice. However, nearly 70 percent of VA patients stopped curative treatment before entering hospice, even though they didn't need to, Gidwani said. She and colleagues are planning future research to understand why.

The team also found differences in the use of hospice and palliative care between cancer types and ages. Patients with brain cancer were more likely to receive palliative care than those with kidney cancer, for example. In addition, patients older than 85 were less likely to receive palliative care than patients between the ages of 65 and 69. But patients older than 80 were more likely to receive hospice care than younger patients. Those with brain cancer, melanoma or pancreatic cancer were more likely to receive hospice than patients with prostate or lung cancer.

"Our work indicates palliative care needs to be better integrated into standard oncological care and that there is wide variation in receipt of hospice care. The VA is strongly supportive of palliative care and hospice, so it's possible that other non-VA environments are performing even worse with respect to appropriate receipt of hospice and palliative care for cancer patients," Gidwani said.

The research did uncover some positive findings, said VJ Periyakoil, MD, clinical associate professor of medicine at Stanford and director of the Stanford Palliative Care Education and Training Program, who was not involved with the study.

"The authors found that 85.6 percent of veterans had some exposure to hospice care or palliative care in the approximately 180 days before death. This is a much higher percentage than what we see in the community," Periyakoil said. The higher number is likely due to the size of the VA and its commitment to improving the care for seriously ill veterans, she said.

However, the study highlights opportunities to improve access to care for patients older than 85, who are likely to have several medical ailments, Periyakoil said. In addition, the study's findings on palliative care are worrisome.

"We know that early palliative care increases both longevity and quality of life. It is really puzzling as to why patients are referred so late despite compelling data to do otherwise," she said. "Some doctors may say that they are unsure about the prognosis and that is why they refer patients late. However, that argument does not hold water as earlier referrals are better, and at worst we would be guilty of referring a patient a little earlier in the trajectory."

Physicians are more likely to use hospice and intensive care at end of life

New research suggests that US physicians are more likely to use hospice and intensive or critical care units in the last months of life than non-physicians. Hospitalization rates were similar.

The retrospective study analyzed fee-for-service Medicare beneficiaries across the United States using Medicare Part A claims data from 2008 to 2010 for 9947 decedent physicians and a random sample of 192,006 Medicare decedents. 

"Our findings seem to run exactly counter to the prevailing message that doctors die different and better -- it turns out doctors are human too," said Dr. Daniel Matlock, lead author of the Journal of the American Geriatrics Society article. "Also, we think this raises concerns that the high utilization seen at the end-of-life is a larger, systems issue."

Study finds hospice use does not increase long stay nursing home decedents' care costs

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IMAGE: KATHLEEN UNROE, M.D., MHA IS REGENSTRIEF INSTITUTE INVESTIGATOR AND AN INDIANA UNIVERSITY CENTER FOR AGING RESEARCH SCIENTIST. view more 

CREDIT: REGENSTRIEF INSTITUTE

INDIANAPOLIS -- Use of hospice services does not increase care costs in the last six months of life for long-stay nursing homes residents according to an analysis conducted by researchers from the Indiana University Center for Aging Research and the Regenstrief Institute. 

Avoidance of costly hospitalization and subsequent post-acute care in the nursing home appears to offset hospice services costs, even when hospice services are provided over a prolonged period of time according to the study of 2,510 long stay nursing home decedents, a third of whom received hospice services. Age, race or gender had no effect on the findings.

"Impact of Hospice Use on Costs of Care for Long Stay Nursing Home Decedents" is published online ahead of print in the Journal of the American Geriatrics Association.

"The government, through Medicare and Medicaid, spends a lot of money on this vulnerable population, but is it getting appropriate value?," queries Indiana University Center for Aging Research and Regenstrief Institute investigator Kathleen Unroe, M.D., MHA, who led the study. "High quality end-of-life care for those living in nursing homes is the goal. 

"An active debate about length of stay, reimbursement and other aspects of Medicare and Medicaid payment reform is underway. Our study provides data relevant to the evolving policy landscape surrounding hospice care." Dr. Unroe is an assistant professor of medicine at the IU School of Medicine.

Hospice is a service, not a place. Hospice care can and does take place in nursing homes with specially trained hospice workers coming to the facility to provide palliative care to terminal residents who have elected, or whose families have elected, hospice care which focuses on end-of-life comfort rather than cure.

"Hospice care is not always a perfect fit in nursing homes -- it can be difficult to determine when a person with advanced dementia, for example, has truly reached the end of life," said Dr. Unroe. "But despite concerns that Medicare's hospice benefit is not being used appropriately in nursing homes, we didn't find evidence of cost shifting between Medicare and Medicaid."

The study found few significant differences in clinical or demographic characteristics between long stay nursing home decedents who did and did not receive hospice services near the end of life. The exception was residents with a cancer diagnosis, who were more likely to receive hospice than those with other diagnoses, also true of hospice use by those not in nursing homes. Advanced dementia also was associated with increased hospice use.

The long stay nursing home residents whose records were reviewed for this study were disproportionately poor, non-white and characterized by high health care costs -- individuals often not included in healthcare utilization studies.

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).