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.

Early Palliative Support Services Help Those Caring for Patients with Advanced Cancer

Dartmouth researchers have found that those caring for patients with advanced cancer experienced reduced depression and felt less burdened by caregiving tasks when palliative support services were offered soon after the patient’s diagnosis. They presented their findings at the American Society of Clinical Oncologist (ASCO) annual meeting in Chicago on June 3, 2014.

“Family caregivers are a crucial part of the patient care team. Because the well-being of one affects the well-being of the other, both parties benefit when caregivers receive palliative care,” said senior study author Marie Bakitas, DNSc, associate professor of Medicine at the Geisel School of Medicine at Dartmouth and L. O'Koren Endowed Chair and Professor at the University of Alabama School of Nursing in Birmingham. “We found that when caregivers began receiving palliative care support around the time of the patient’s advanced cancer diagnosis, they had less depression, perceived themselves to be less burdened by performing caregiving tasks, and had a better quality of life.”

The findings presented at ASCO were part of a larger ENABLE (Educate, Nurture, Advise, Before Life End) study on palliative care. Bakitas presented the patient outcomes from the ENABLE III study. The lead author on the caregiver study, J. Nicholas Dionne-Odom, Ph.D., RN, co-investigator formerly of the Geisel School of Medicine at Dartmouth and currently a postdoctoral fellow in the UAB Cancer Prevention and Control Training Program and researcher in the School of Nursing, presented on the caregiver outcomes.

For the caregiver section of the study, 122 family caregivers of patients with recurrent or metastatic cancer received palliative care support over the phone with an advanced practice nurse specially trained in delivering palliative care. The phone sessions covered common caregiving challenges including how to use creativity, optimism, planning, and expert information to manage problems; how to effectively partner with the cancer patient to manage symptoms; self-care (healthy eating, exercise, and relaxation); how to build a support network; and decision making and advance care planning. After these sessions, the caregivers received monthly supportive care follow-up phone calls. One group of caregivers started this phone-based program within two weeks of agreeing to participate in the study, while the other group started 12 weeks later.

The study results suggest that the earlier palliative care services are introduced to caregivers, the better they will be able to cope with the caregiving experience. Researchers found that overall quality of life, depression, and feelings of being overwhelmed by the demands of caregiving all improved in the group that started the program immediately compared with those who started later.

Dionne-Odom noted that there are few organized palliative care programs for caregivers of patients with advanced cancer, and reimbursement for this type of counseling is very limited. An online family care navigator tool from the Family Caregiver Alliance’s National Center on Caregiving website may help family givers find assistance in their local area.

Doctors reluctant to discuss end-of-life care with heart failure patients

Healthcare providers are reluctant to discuss end-of-life care with heart failure patients and their families because they feel uncomfortable broaching the topic or lack time, according to a new study presented at the Quality of Care and Outcomes Research 2014 Scientific Sessions.

Researchers surveyed 50 physicians and 45 nurse practitioners or physician assistants at three practices at the Mayo Clinic in Rochester, Minnesota and the Mayo Clinic Health System. Ninety-five clinicians completed the survey.
Among the findings:

• Only 12 percent of the healthcare providers reported having routine yearly discussions about end-of-life care as advocated by the American Heart Association.
• Thirty percent of the group reported having little confidence in discussing or providing end-of-life care.
• Among the 52 percent who said they felt hesitant mentioning end-of-life-care, 21 percent cited their perceptions that patients weren’t ready to talk about the issue; 11 percent said they felt uncomfortable bringing it up; 9 percent said they worried about destroying a sense of hope; and 8 percent said they lacked time.

Healthcare providers were often unsure about who should bring up end-of-life care: 63 percent of heart failure specialists and 58 percent of community cardiology clinicians thought end-of-life care discussions were the responsibility of heart failure cardiologists, while 66 percent of primary care providers felt it was their responsibility.

Despite these perceptions, heart failure specialists and community cardiology clinicians were far more likely to have referred heart failure patients to palliative care within the past year than primary care physicians (89 percent versus 21 percent).

“Providers did express an interest in receiving additional training to develop the skills and confidence to talk about end-of-life care with their patients with heart failure,” said Shannon Dunlay, M.D., M.S., the study’s lead researcher and a cardiologist at the Mayo Clinic in Rochester, Minnesota.

There is no evidence that bringing up end-of-life care ruins hope, and it may ease anxiety for some patients and families, Dunlay said.

About 5.1 million Americans have heart failure and about half of those die within five years of their diagnosis, according to American Heart Association statistics.

“Communication is key but in many hospitals and health systems this can be difficult as patients often have multiple healthcare providers,” Dunlay said. “Sometimes it’s helpful to pick up the phone and have a provider-to-provider conversation so that everybody is on the same page. Incorporating end-of-life conversations into the ongoing, routine care of the patient is important as goals and preferences can change over time and patients and their families can feel more comfortable and confident in relaying their wishes to multiple providers.”