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."

Expanded hospice improves care but raises Medicare costs

A large new study in the New England Journal of Medicine examines the impact of growth in Medicare's hospice benefit among nursing home residents between 2004 and 2009. The researchers documented improvement in indicators of care quality, such as less reliance on intensive care and feeding tubes, but also found increased costs to Medicare of $6,761 per patient on average.

Early in the history of the Medicare hospice benefit, care was most likely to be provided by nonprofit organizations and advocates to individuals dying in their community, said study lead author Pedro Gozalo, research associate professor of health services, policy and practice in the Brown University School of Public Health. Then it became more of a business.

"The number of providers doubled over the decade," Gozalo said. "The vast majority of the expansion was in the for-profit [sector]."

Policymakers have worried that Medicare costs due to hospice have been increasing, even though part of the original policy motivation was that hospice growth might save Medicare money by reducing expensive, aggressive end-of-life treatments such as hospital intensive care.

The new study uses a novel analysis of nursing home and Medicare data for more than 786,000 residents who died either in 2004, before the expansion, or in 2009, after the expansion. By statistically comparing differences among hospice and non-hospice users in those years, and by accounting for their apparent care preferences, the researchers were not only able to measure how the expansion has affected care and costs but also to identify why net hospice costs have been increasing. 

For more about the design of the research, see the sidebar below.

Care and costs

With data on their comparison groups assembled, the researchers analyzed differences in the kind of care the patients received and what it cost. They controlled their analyses for a wide variety of possibly confounding factors such as age, gender, race, marital status, diagnosis, comorbidities, Do Not Resuscitate and Do Not Hospitalize orders (as proxies for preferences for aggressive end-of-life care), and the patients' patterns of care utilization in the year before death, as well as various characteristics of their nursing home.

The study confirmed that not only did hospice use increase (to 39.8 percent of patients in 2009 from 27.6 percent of patients in 2004), but also the average length of time in hospice care increased (to 92.6 days in 2009 from 72.1 days in 2004).

That increase in palliative care was associated with a significant reduction in several indicators of aggressive, ultimately futile medical intervention at end-of-life: Intensive care utilization dropped by 7.1 percent, hospital transfers fell 2.4 percent, and feeding tube use declined by 1.2 percent.

To calculate the net inflation-adjusted cost impact that hospice expansion has had on Medicare, the researchers looked at the changes over time within each comparison group and then examined how those differences compared between the groups.

For example, among people who did not elect hospice in both years the average per patient hospitalization cost grew by $2,656 between 2004 and 2009. Meanwhile among those who likely wanted hospice in 2004 but didn't get it and similar individuals in 2009 who used hospice, hospitalization costs increased only $596 over time. By comparing those cost differences, the researchers showed that hospice expansion was associated with significantly slower growth in hospitalization costs by about $2,000 per patient on average.

In fact, hospice expansion was associated with savings for Medicare in every cost category, except for the cost of hospice itself. But hospice costs rose $10,191 per patient. Subtracting all the cost savings from that figure yielded a total average net cost to Medicare of $6,761.

Why so expensive?

The study offers some explanation for why hospice costs have soared faster than savings. A big one is the increased length of stay in hospice. Part of the reason for that is medical: In 2009 a greater proportion of hospice users than in 2004 carried terminal diagnoses such as dementia or congestive heart failure, which have more difficult-to-predict survival trajectories than cancer, the traditional mainstay of hospice care.

The study shows that patients who had cancer without dementia were associated with the smallest rise in net cost associated with hospice expansion ($2,180) while patients with dementia but not cancer produced the largest net cost increase ($8,592).

"The way [hospice] is being implemented does come with a price," Gozalo said.

By clarifying the costs and how they arise, the study can help policymakers evaluate the economics of hospice, the authors said. It appears to be achieving the goal of improving care for those that prefer a palliative rather than curative approach, but it is not saving Medicare money.

"This study raises important concerns regarding the efficiency of hospice services," Gozalo and his co-authors concluded. "With the current payment policy based on a flat per-diem payment rate and considering the increase in long hospice stays, Medicare hospice may not achieve cost savings."

Co-author Michael Plotzke, a health economist with Abt Associates, said the timing of hospice use has to be appropriate.

"Hospice care should be provided at the right time and for the right duration if we are to avoid driving up costs for end-of-life care," he said.

The paper's other authors are Vincent Mor, Susan Miller, and Joan Teno of Brown University. The study was funded by a contract from the Centers for Medicare and Medicaid Services (HHSM-500-2005-000881), with additional support from an NIH/NIA-funded Program Project (AG027296).

Sidebar: More about the design of the research

Prior "observational" studies have attempted to estimate -- with mixed results -- whether hospice increases Medicare costs by comparing costs for nursing home residents who elected hospice and those who didn't in the same timeframe or cohort. But that approach is flawed, said Brown University public health researcher Pedro Gozalo, because it doesn't account for patients' preferences regarding care.

When the goal is to measure the net additional cost of increased hospice use, what must be compared is the cost incurred by someone who wanted hospice and got it, with the cost incurred by someone who did not want aggressive end-of-life care but didn't get hospice.

After hospice became more widely available, as it did after expansion, patients that did not elect hospice in a given year probably had a higher preference for aggressive care. They therefore are not an ideal group to compare to those that elected hospice that year. Going back in time to 2004, when hospice was not as pervasive an option, gave the researchers a "natural experiment." They could find individuals who did not want aggressive end-of-life care but did not get hospice and comparing them to individuals in 2009 who also did not want aggressive care but got hospice.

So the researchers amassed data to yield a group of "new" hospice users consisting of decedents who used hospice in 2009 but would not have been likely to elect hospice in 2004, and compared their outcomes to those of similar decedents in 2004 who did not use hospice but likely would have done so had it been more readily available. To account for changes over time due to other trends rather than due to changes in hospice election, the researchers compared the changes in outcomes over time for this new hospice comparison group to those that occurred for a group of decedents who did not use hospice, and likely didn't want to, in either year.

The result was a view of how service use and costs rose in groups of patients with comparable care preferences. As hospice expanded, costs rose as more patients who wanted palliative care, but did not want intensive care, received what they preferred.

Dying patients' choices not always aligned to caregivers', less willing to pay to extend life

DUKE-NUS GRADUATE MEDICAL SCHOOL SINGAPORE

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An illuminating study compares the willingness of stage IV cancer patients, and their caregivers; to pay to extend their lives by one year against that of other end-of-life improvements. The research, led by members of the Lien Centre for Palliative Care (LCPC) and collaborators from the National Cancer Centre Singapore, was recently published in the journal, Palliative Medicine.

Patients with advanced cancer or other life limiting illnesses often have to consider how much money they are willing to spend on high cost treatments that result in only moderate improvements in length or quality of life. These decisions are very difficult for patients to make, and in some cases the decision is entirely deferred to a family caregiver.

Past research has shown that in addition to extending life, being free of pain and dying at home are important considerations for people nearing the end of their lives. However, the value that patients place on these considerations or their willingness to pay for either was not previously known.

A team led by Professor Eric Finkelstein and Assistant Professor Chetna Malhotra from the LCPC in Duke-NUS Graduate Medical School (Duke-NUS) administered surveys to 211 patients with stage IV cancer and their informal caregivers to find out more about their end-of-life preferences.

Participants were asked to choose their most-preferred end-of-life scenarios out of a series of options that varied along key dimensions, including years of life remaining, degree of pain experienced, place of death, level of burden on caregivers, quality of healthcare experience, cost, and source of payment (cash, Medisave, or family members' cash or Medisave). Using the results, the authors quantified patients and caregivers willingness to pay to improve their end of life experience.

They found that patients' willingness to pay to extend their life by one year was valued at S$18,570, which is lower than their willingness to pay to avoid severe pain (S$22,199), or to die at home (S$31,256), and only slightly more than their willingness to pay to receive a high-quality health-care experience (S$16,191). Caregivers had a three-fold greater willingness to pay than patients to extend life by one year and for most of the other features considered.

Dr. Finkelstein believes these results suggest that health insurers and physicians may be putting too much emphasis on life extending treatments for these patients. He notes, "Results highlight the importance of pain management, supporting home deaths, and addressing other end-of-life concerns, in addition to efforts to extend life."

Dr. Malhotra added that the differences in patients' and caregivers' willingness to pay suggest the need for eliciting patient preferences directly during treatment decision making as opposed to relying on caregiver input, "We hope this research helps foster greater communication between patients, caregivers, and doctors".

The team is planning to extend this research to test patient decision aids that can help ensure that patients' end-of-life experience is most consistent with their preferences.

Less futile end-of-life care observed where palliative care knowledge is greater

When a nursing home patient is dying, aggressive interventions such as inserting a feeding tube or sending the patient to the emergency room can futilely exacerbate, rather than relieve, their distress. Palliative care focuses nursing home resources on providing comfort at the end of life, but nursing directors vary widely in their knowledge of it. A new large national study found that the more nursing directors knew about palliative care, the lower the likelihood that their patients would experience aggressive end-of-life care.

Susan C. Miller, professor (research) of health services, policy and practice in the Brown University School of Public Health and lead author of the study in the Journal of Palliative Medicine, worked with colleagues to survey nursing directors at more than 1,900 nursing homes around the country between July 2009 and June 2010 to assess their knowledge of palliative care and their facility's implementation of key palliative care practices. The study is the first nationally representative sample of palliative care familiarity at nursing homes.

More than one in five of the surveyed directors had little or no basic palliative care knowledge (i.e., a score of 1 or 0 on a 0-to-3 scale), although 43 percent were fully versed. The average score was 2.2. Facility palliative care practice scores ranged from 12 to 36, with an average of 28.1.

"While the Institute of Medicine has called for greater access to skilled palliative care across settings, the fact that one in five U.S. nursing home directors of nursing had very limited palliative care knowledge demonstrates the magnitude of the challenge in many nursing homes," Miller said. "Improvement is needed as are efforts to facilitate this improvement, including increased Medicare/Medicaid surveyor oversight of nursing home palliative care and quality indicators reflecting provision of high-quality palliative care."

In addition to quizzing the directors, the researchers also analyzed Medicare data on the 58,876 residents who died during the period to ascertain the treatments they experienced when they were dying.

When the researchers analyzed palliative care knowledge together with treatment at end of life, they found that the more directors knew about basic palliative care, the lower likelihood that nursing home patients would experience feeding tube insertion, injections, restraints, suctioning, and emergency room or other hospital trips. Meanwhile, patients in higher-knowledge homes also had a higher likelihood of having a documented six-month prognosis. Most of these associations were highly statistically significant, but a few were marginally significant even after adjusting for a variety of factors including a nursing home's extent of hospice use.

The study shows only an association between palliative care knowledge and less aggressive end-of-life care, the authors note. It could be that the knowledge leads to improved care, but it could also be that at nursing homes with better care in general, there is also greater knowledge.

But if there is a causal relationship, then it could benefit thousands of nursing home residents every year for their nursing home caregivers to learn more about palliative care, the authors conclude.

"The need for improving nursing home staff palliative care knowledge and practice is generally agreed upon, and the efficacy of such improvement is supported by our study findings," the authors wrote.