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.

Use of intensive medical services for ovarian cancer patients at end of life increases despite rise in use of hospice

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There have been widespread efforts to improve the quality of life of terminally ill patients. As more patients choose to spend their final days and weeks in hospice care rather than a hospital, the hope is the use of intensive and costly hospital services would decline. A new study by Dana-Farber Cancer Institute researchers shows for one group of terminally ill cancer patients, that is not what is happening.

The study, which tracked nearly 7,000 older patients with ovarian cancer, found that between 1997 and 2007, patients were more likely to enter a hospice and less likely to die in a hospital. However their use of hospital-based services actually increased. These seemingly paradoxical findings, published in the October issue of the Journal of Clinical Oncology, suggest that many patients received aggressive treatments while in the hospital, and resorted to hospice care as an "add-on" when those treatments fail, the authors write.

"There's a growing awareness that the use of aggressive, expensive medical interventions at the end of life often doesn't improve patients' quality of life and may even make it worse," said Alexi Wright, MD, MPH, the lead author of the study and medical oncologist at Dana-Farber. "Hospice care, which focuses on intensive symptom management at home, is an attractive option for many people. But unless people make an end-of-life care plan while they're healthy -- spelling out their preferences in advance -- these important decisions are often made for them, or occur in a crisis atmosphere. That may explain why, in this study, we saw an increased use of hospital-based services even as hospice enrollment increased."

The study analyzed the Medicare records of 6,956 women aged 66 or older who were diagnosed with ovarian cancer between 1997 and 2007, and who died of the disease by the end of 2007. The researchers found that hospice use increased significantly during that period, while hospitalized deaths fell. But they also found significant increases in intensive care unit admissions, hospitalizations, repeated emergency department visits, and transitions from one health care facility to another.

During the same time frame, the proportion of patients who were referred to hospice from a hospital inpatient clinic rose. And 70 percent of patients were transferred between medical facilities at least once in the last month of life -- with 20 percent experiencing major transitions between care settings within the final three days of life.

The findings paint a hectic picture of elderly, terminally ill patients undergoing multiple, stressful medical interventions, undergoing transfers between facilities, all before arriving at a hospice, where their stay may be very brief.

"The earlier people can make plans -- with their families and physicians -- the better they can control the kind of care they receive at the end of life," Wright remarked. "Many people want their final days to be a time of legacy building -- a time when they can share or build memories with their loved ones -- instead of time spent in hospitals or receiving potentially futile medical interventions. Our study points to the extent to which such planning is still needed."

Patients Most Likely to Delay Hospice Enrollment Until Final Days of Life

One in six cancer patients enroll in hospice only during their last three days of life, according to a new study from a team from the Perelman School of Medicine at the University of Pennsylvania. Their findings, published online last month in the Journal of Clinical Oncology (JCO)  also reveal a profile of patients who may be most at risk of these late admissions.

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“Waiting until the final days of life to begin hospice can shortchange patients and their families – skipping over many benefits of hospice care and limiting the opportunity to improve patients’ quality of life during this stressful time,” said study co-author David Casarett, MD, a professor of Medicine and director of Hospice and Palliative care at Penn Medicine. 

“Our findings point to some reasons why patients may seek hospice care so late in the course of their illness, which we hope will enable us to improve transitions to hospice at a more beneficial point in their care.”

The team examined de-identified data from electronic medical records of 64,264 patients in 12 hospices in the Coalition of Hospices Organized to Investigate Comparative Effectiveness network from January 2008 to May 2013. Hospices spanned 11 states, including Pennsylvania, with censuses ranging from 400 to 1,700 patients per day.  Of those 64,264 patients, 10,460 had a hospice stay of 3 days or fewer.

The study found several characteristics associated with hospice length of stay of three days or less, including being male, married, younger than 65, and of nonwhite ethnicity. Also, patients with blood cancers and liver cancer were more often than those of oral cancer to be among those admitted within the last three days of life.

Findings indicated that Medicaid and uninsured patients who enrolled in hospice typically did so earlier in the course of their illness than those with commercial insurance or Medicare. The researchers suggest these patterns illustrate which patients may be less able to afford out-of-pocket expenses associated with prolonged aggressive or experimental treatment, or that they may receive care in oncology practices that differ in their aggressiveness of care.

Previous studies found that patients with blood cancers enter hospice less often, overall, than other cancer patients, but this study also examined timing of entry and found those with blood cancers entered hospice later than other cancer patients. The authors theorize this may be due to a dependence on blood products, as hospice typically does not cover blood transfusions, or pursuit of bone marrow or stem cell transplants late in the disease course, which can delay hospice. Also, those with blood cancers – especially patients who’ve undergone bone marrow transplants and are susceptible to life-threatening infections -- may have a more abrupt decline towards end of life than those with other cancers. 

The researchers say the marriage association may be because marriage can provide caregiving structure – such as help with transportation to medical appointments and assistance with medication -- and emotional support and motivation to support continued treatment. And, they note, some married patients may prolong treatment for their spouse’s sake.

This study comes amid the National Quality Forum and the American Society for Clinical Oncology’s joint endorsement of quality measures for end of life care in cancer patients. Eventually, oncology practices and health systems may be measured and reimbursed in part on their percentage of patients who enroll near the end of life and be linked to pay-for-performance initiatives.

With further study, the Penn researchers suggest that these findings could aid in identifying at-risk patient populations for targeted interventions promoting earlier hospice discussions.

“It is essential to optimize transitions to hospice and make it easier for patients and their loved ones to access this care,” said the study’s lead author, Nina R. O'Connor, MD, assistant professor of clinical medicine. “Better integration of palliative care into cancer treatment – even that which is provided with curative intent – is one strategy that may be helpful. By helping patients to access care that improves their quality of life along the spectrum of their illness, we are able to create a more natural pathway to hospice care when and if that option becomes appropriate.”

Antibiotic use prevalent in hospice patients despite limited evidence of its value

New research suggests that use of antibiotics is still prevalent among terminal patients who have chosen hospice care as an end-of-life option, despite little evidence that the medications improve symptoms or quality of life, and sometimes may cause unwanted side effects.

The use of antibiotics is so engrained in contemporary medicine that 21 percent of patients being discharged from hospitals directly to a hospice program leave with a prescription for antibiotics, even though more than one fourth of them don’t have a documented infection during their hospital admission.

About 27 percent of hospice patients are still taking antibiotics in the final week of their life.

This raises serious questions about whether such broad and continued antibiotic use is appropriate in so many hospice cases, experts say, where the underlying concept is to control pain and protect the remaining quality of life without aggressively continuing medical treatment.

Additional concerns with antibiotic use, the study concluded, include medication side effects and adverse events, increased risk of subsequent opportunistic infections, prolonging the dying process and increasing the risk of developing antibiotic resistant microorganisms.

The findings were just published in Antimicrobial Agents and Chemotherapy by researchers from Oregon State University and the Oregon Health & Science University. It was supported by the National Institutes of Health.

“Hospice care is very patient centered and in terminal patients it focuses on palliative care and symptom relief, not curative therapy,” said Jon Furuno, an associate professor in the Oregon State University/Oregon Health & Science University College of Pharmacy.

“It’s not for everyone, and it’s a serious decision people usually make in consultation with their family, nurses and doctors. These are tough conversations to have.

“Having decided to use hospice, however, the frequency and prevalence of antibiotic use in this patient population is a concern,” Furuno said. “Antibiotics themselves can have serious side effects that sometimes cause new problems, a factor that often isn’t adequately considered. And in terminally-ill people they may or may not work anyway.”

Issues such as this, Furuno said, continue to crop up in the evolving issue of hospice care, which is still growing in popularity as many people choose to naturally allow their life to end with limited medical treatment and often in their own homes. Hospice is covered by Medicare for people with a life expectancy of less than six months, helps to control medical costs and reduce hospital stays, and its services are now used by more than one third of dying Americans.

Unnecessary and inappropriate antibiotic use is already a concern across all segments of society, researchers said in the report, and more efforts are clearly needed to address the issue in hospice patients. The design of the study probably leads to it underestimating the significance of the problem, the researchers wrote in their conclusion.