Hospice care at home, at assisted living facility, at nursing home

Use of hospice has exploded over the past decades with approximately half of those who die while enrolled in Medicare receiving hospice care. A new study from the Indiana University Center for Aging Research and the Regenstrief Institute compares the quality of hospice services provided for patients living at home, in assisted living facility and in nursing homes as perceived by their family members.
The findings, which reveal subtle but significant differences in perceived quality have the potential to help influence priorities for improvement of quality, patient choice of hospice service provider and reimbursement for these services according to Kathleen Unroe, MD, MHA of the Indiana University Center Aging Research, Regenstrief Institute and IU School of Medicine, who led the study.
The researchers analyzed the results of the Family Evaluation of Hospice Care, a federally mandated quality survey, for 7510 hospice patients age 18 and over for whom electronic medical record data was also available. Survey respondents were more likely to be the spouses or partners of patients who received hospice services at home. Respondents were more likely to be the children of patients who received hospice services at an assisted living facility or nursing home.
"Identifying the appropriate timing for referral to hospice is a challenge for clinical providers and a concern for the patient, family and policymakers," Dr. Unroe said. "A large majority -- 84 percent -- of survey respondents reported that they believed timing of hospice referral had occurred at the right time with family members of nursing home residents being less likely to feel that referral was at the right time and also more likely to feel that patients did not die at the setting of their choice."
Overall, 63 percent of survey respondents rated hospice quality as excellent with hospice care for family members in nursing homes being the least likely to be viewed as excellent.
Nursing home patient families also indicated that they lacked information on pain medications and treatment although they didn't see this as a problem. A perceived absence of information is not surprising, said Unroe, because family members usually have a less hands-on role in the nursing home than in the other two settings. She adds that it may be difficult for family members to "tease out" what part of the care experience they are unhappy with -- routine nursing home care or the actual hospice care.
In a previous study, published in March 2017, Dr. Unroe and colleagues reported that they had found only minimal differences in the intensity of hospice services provided in nursing homes as compared to hospice services provided to patients in assisted living facilities or their homes. However, the mix of services did vary by site type.
"While service intensity is similar in all three settings, we know from our new work that patient and family needs differ by setting," said Dr. Unroe. "Unlike previous studies of family perception of hospice care, we report on the characteristics of patients whose families completed the evaluation survey and those who did not. And we also factor in details on the survey respondents themselves. For example, white and female family members were the most likely to complete the quality of care survey.
"In addition to providing actionable information to policy makers, clinicians, and additional interested parties, our findings may help hospice providers and others to tailor communication based on patient setting. As our population ages and more individuals receive hospice at home, in assisted living facilities and in nursing homes this is of critical importance."

Hospice offers comfort for older adults at end of life. Should we consider it sooner?

A team of researchers from Yale University has studied how soon older adults who were experiencing distressing symptoms and disability were admitted to hospice near the end of their lives . Their study was published in the Journal of the American Geriatrics Society.
The researchers examined information from a study of 562 people, aged 70 and older, who were not disabled when the study began. Of these people, 244 (43.4 percent) were admitted to hospice during the last year of life. These people were slightly older and more likely to have cognitive impairments (problems thinking and making decisions) than those individuals who weren't admitted to hospice.
The most common condition leading to death was frailty (the medical term for physical weakness or an increasing likelihood for poor health), followed by organ failure (the term for certain parts of our body no longer working as they should), advanced dementia, and cancer.
The researchers found that cancer and advanced dementia were the conditions that most often resulted in being admitted for hospice care. Older adults who were frail were least likely to be admitted to hospice.
The duration of hospice care was less than 13 days for half of the study participants. The short duration of hospice suggests that healthcare providers might need to consider discussing referrals to hospice sooner with people who are approaching the end of their lives. Alternatively, we may need to develop and test other ways to reduce the high burden of distressing symptoms and disability at the end of life, said the researchers.
The researchers suggest that referral to hospice at the end of life should be based on an older adult's burden of pain and other distressing symptoms.

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This summary is from "Distressing Symptoms, Disability and Hospice Services at the End of Life: Prospective Cohort Study." It appears online ahead of print in the Journal of the American Geriatrics Society.

Study compares hospice care in nursing homes, assisted living facilities and patient homes

A new study from the Indiana University Center for Aging Research and the Regenstrief Institute has found only minimal differences in the intensity of hospice services provided in nursing homes as compared to hospice services provided to patients in assisted living facilities or their homes. However the mix of services did vary by site type.

Researchers, led by Center for Aging Research and Regenstrief Institute investigator Kathleen Unroe, MD, MHA, assistant professor of medicine at IU School of Medicine, analyzed data from more than 32,600 men and women in 18 states who received routine hospice care from 2009 to 2015. Approximately 43 percent had short--less than two weeks--hospice episodes while 20 percent were in hospice care for greater than six months.

"It has been a concern that patients who live in nursing homes or assisted living facilities may be getting potentially less hospice care than people receiving hospice care at home," Dr. Unroe said. "We found that not to be the case. However, while the intensity of hospice services across settings was quite similar, people living at home were more likely to get more hospice nurse care, while those living in nursing homes or in assisted living facilities received more hospice aide care across the hospice episode.

"This difference in service mix may be explained at least in part by differences in diagnoses. A patient with a lot of medical complexity who is living at home requires more nurse visits. Individuals with advanced dementia who live in assisted living facilities or nursing homes may require more hospice aide assistance to keep them comfortable in the terminal phase of that disease. An overall 'U shaped curve' of service intensity was found for all three site types and overall multiple lengths of stay."

Hospice nurses and hospice nurse aides are specially trained in managing care and symptoms as well as providing comfort to individuals at the end of life. Hospice workers are employed by a hospice organization.

Median length of hospice care for assisted living facility residents was 42 days compared to19 days for nursing home residents and 17 days for patients at home. Assisted living facility patients in hospice were older and more likely to have dementia as their terminal diagnosis than nursing home residents or patients in hospice at home.

"Use of hospice services is growing dramatically," Dr. Unroe said. Our study reports on a large sample of hospice patients. Our findings will provide important baseline data as we and others analyze how the changes in government payment methodology--made in 2016 for the first time in decades--may impact a whole range of aspects of hospice care including intensity of services provided and lengths of stay."

Medicare's hospice benefit was created over three decades ago with the dual intent of providing higher quality end-of-life care and promoting cost savings. Expenditures for hospice care have significantly increased as use of the benefit has increased. In 2012, nearly half of Medicare beneficiaries received hospice services prior to death. In 2013, Medicare spent an estimated $15 billion on hospice, representing a 420 percent growth over the past 13 years.

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."