Who your doctor is could dictate how you're cared for at end of life

Credit: Petr Kratochvil/public domain

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.

11 jun 2015--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."

Provided by Brigham and Women's Hospital

Study shows need for improved empathic communication between hospice teams and caregivers

A new study authored by University of Kentucky researcher Elaine Wittenberg-Lyles shows that more empathic communication is needed between caregivers and hospice team members.

04 Mar 2013—A new study authored by University of Kentucky researcher Elaine Wittenberg-Lyles shows that more empathic communication is needed between caregivers and hospice team members.

The study, published in Patient Education and Counseling, was done in collaboration with Debra Parker Oliver, professor in the University of Missouri Department of Family and Community Medicine. The team enrolled hospice familycaregivers and interdisciplinary team members at two hospice agencies in the Midwestern United States.

Researchers analyzed the bi-weekly web-based videoconferences between family caregivers and their hospice teams. The authors coded the data using the Empathic Communication Coding System (ECCS) and identified themes within and among the coded data. The team reviewed 82 total meetings.

Overall, the researchers noted that members of the hospice team tended to react to caregiver empathic opportunities with a perfunctory response, implicit recognition, or simple acknowledgement as defined by the ECCS scale. Most caregiver statements were met with biomedical or procedural talk from the hospice team.

Few responses went beyond to offer confirmation with a positive remark to the caregiver, and even fewer provided a shared experience to address the caregivers' emotional needs.

Prior research has shown that a physician's expression of empathy positively influences the patient-physician relationship, but as this study shows, this is often not the norm. Other research shows that physicians tend to respond more to informational cues from patients than emotional cues, and often respond to patient concerns by turning the conversation to biomedical information or medical explanation, nonspecific acknowledgement or reassurance.

"This study shows the need for better empathic communication between caregivers and hospice team members," said Wittenberg-Lyles, who holds a joint appointment in the UK College of Communications and the UK Markey Cancer Center. "Improving communication about psychosocial issues, emotional losses and frustrations for the caregiver will lead to better patient-centered care for hospice patients and their families."

Provided by University of Kentucky

Hospice care under-used by many terminally ill patients, study finds

BOSTON, Mass., 26 may 2009— Hospice, a well-established approach to palliative care, has enabled countless people worldwide to die with dignity. Through focusing on the patient rather than the disease, individuals can spend the last weeks of their lives in an environment where hospice caregivers minimize their pain, maximize their comfort, and provide bereavement services for loved ones and family members.

A new study led by researchers at Harvard Medical School, however, found that only about half the patients diagnosed with metastatic lung cancer discuss hospice with their physician within 4 to 7 months of their diagnosis.

"Many terminally-ill patients who might benefit from hospice aren't discussing it with their physicians and may not be aware of the services hospice could offer," says Haiden Huskamp, lead author on the study and HMS associate professor of health care policy. Findings were published in the May 25 Archives of Internal Medicine.

Through the Cancer Care Outcomes Research and Surveillance Consortium, the researchers surveyed 1,517 patients diagnosed with metastatic lung cancer. For reasons not clear, blacks and Hispanics were less likely to discuss hospice than whites and Asians. Forty-nine percent of blacks and 43 percent of Hispanics discussed hospice with their doctors; for whites and Asians the percentages were 53 and 57, respectively. Married people were also less likely than unmarried people to have this discussion (51 percent compared with 57 percent, respectively).

In general, the longer patients expected to live after their diagnosis, the less likely they were to have explored hospice care with their doctor. However, the researchers also found that patients tended to overestimate how long they had to live. For example, about 30 percent of the patients thought that they would live up to two years. In reality though, only about 6 percent of patients with metastatic lung cancer will survive that long.

What's more, patients who preferred care that eased their pain and suffering at the end of life over care that extended life (roughly 50 percent of patients) were no more likely to have discussed hospice than patients who had the opposite preference.

"These conversations can be difficult for everyone involved—patients, families, and physicians," says Huskamp. "But discussing prognosis and end-of-life care options in advance is essential to make sure that patients receive care that reflects their wishes."

"Patients with advanced lung cancer understandably hope that cancer treatments can extend their lives," notes John Ayanian, senior author on the study and HMS professor of medicine and health care policy. "When these treatments are no longer working, their doctors have an important role to play in offering them hospice care that will ease their symptoms as they approach the end of life."

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This study was funded by the National Cancer Institute.

Written by David Cameron

Full citation

Archives of Internal Medicine, May 25, Vol 169, number 10

"Discussions with Physicians about Hospice among Patients with Metastatic Lung Cancer"

Haiden A. Huskamp, Ph.D., Nancy L. Keating, M.D., M.P.H., Jennifer L. Malin, M.D., Ph.D., Alan M. Zaslavsky, Ph.D., Jane C. Weeks, M.D., M.Sc., Craig C. Earle, M.D., Joan M. Teno, M.D., M.S., Beth A. Virnig, Ph.D., M.P.H., Katherine L. Kahn, M.D., Yulei He, Ph.D., and John Z. Ayanian, M.D., M.P.P.

Eligibility criteria contribute to racial disparities in hospice use

ATLANTA, Ga., 23 dec 2008 -- A new study finds that hospice services—care that is provided by physicians, visiting nurses, chaplains, home health aides, social workers and counselors—have restrictions that reduce usage by many patients who are most in-need, particularly African Americans. The research, published in the February 1, 2009 issue of CANCER, a peer-reviewed journal of the American Cancer Society, indicates that the eligibility criteria for hospice services should be reconsidered.

In order to enroll in hospice, patients must have a prognosis of six months or less if their illness runs its usual course. They must also accept the palliative nature of hospice care. African American patients are less likely than white patients to use hospice, but the reasons for this difference have remained somewhat unknown.

In the current work, investigators at the University of Pennsylvania designed a study to explore the reasons for racial disparities in hospice care among cancer patients. To define and compare preferences for cancer treatment and perceived needs for hospice services among African-American patients and white patients, Dr. David Casarett and colleagues interviewed 283 patients who were receiving cancer treatment at six oncology clinics within the University of Pennsylvania Cancer Network. Patients were asked about their perceived need for five hospice services and their preferences for continuing cancer treatment, and they were followed for six months or until death. The researchers theorized that if disparities in hospice use were the result of preference for aggressive treatment among African Americans, then their rates of hospice use could be increased by redesigning hospice eligibility criteria. Conversely, if African Americans were less likely to want hospice services, then changes to the benefit may not be necessary, but modifications to the services that are offered may be warranted.

Dr. Casarett's team found that African-American patients had stronger preferences for continuing their cancer treatments as well as greater perceived needs for hospice services. The greater perceived need for hospice services among African Americans was attributed largely to differences in self-reported finances—poorer patients wanted more services.

"These findings suggest that the hospice eligibility criteria of Medicare and other insurers requiring patients to give up cancer treatment contribute to racial disparities in hospice use," the authors wrote. "Moreover, these criteria do not select those patients with the greatest needs for hospice services," they added.

The basis for these disparities is likely related to both cultural differences and economic characteristics. The results from this study indicate that hospice access could be made fairer by using eligibility criteria that are more directly need-based. For example, the investigators suggested that eligibility might be determined by assessing needs for specific hospice services such as pain or symptom management.

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Article: "Race, treatment preferences, and hospice enrollment: Eligibility criteria may exclude patients with the greatest needs for care." Jessica Fishman, Peter O'Dwyer, Hien L. Lu, Hope Henderson, David A. Asch, and David J. Casarett. CANCER; Published Online: December 22, 2008 (DOI: 10.1002/cncr.24046); Print Issue Date: February 1, 2009.

Keeping a Promise When a Life Is Near Its End

By ELLEN D. FELD, M.D

“If something should happen to me, and I couldn’t help myself, would you be willing to help me?”

12 nov 2008--It is the question so many of us dread hearing. My mother asked it of me around her 75th birthday. Of course I didn’t need to ask what she meant by “something” or “help.” She was a card-carrying member of the Hemlock Society. On her bookshelves were titles like “Final Exit” and “The Peaceful Pill Handbook.”

“Can I think about that?” I said, hoping she might forget to follow up. It was a ridiculous hope: she took as gospel my every medical comment, and she never forgot a single one.

My mother had been ready to die for years. Not that she was suicidal, but she had always been one of those people who found the cloud in every silver lining. For my mother, life’s positives outweighed its negatives, but just barely.

When she lost all but her peripheral vision to macular degeneration and could no longer read, drive or teach, the scales tipped in the opposite direction. Whenever an acquaintance died or received a diagnosis of something swift and painless, her reaction (often to the dismay of those around her) was “Oh, that lucky fellow.”

Her greatest fear was of a stroke or some other catastrophe that would force her to live on for unwanted years, unable to care for herself. Her own mother, after a stroke, had spent the end of her life in a nursing-home wheelchair.

In a phone call two weeks to the day after her initial question, my mother did follow up: “Did you get a chance to think about what I asked?” Of course I had. I had spent large chunks of time obsessing about it. So I gave the only answer I could stand to give, the only kind answer I could think of.

“Yes,” I said. “If you ever need my help, of course I will help you.”

Then I changed the subject, but not before hearing the immense relief and gratitude in her voice. Even though I was quite sure my definition of “help” did not match hers, to answer otherwise would have been cruel. What did it matter, I thought; she couldn’t possibly hold me to it, and with a little luck it will never come up. And in fact, the subject did not come up again for more than a decade.

A couple of months short of her 87th birthday, my mother began to complain repeatedly of being unable to work the remote for her large-screen television. Each time she said this, someone would painstakingly walk her through the steps. But a few days later something would go wrong and she would need help again. A few weeks later, when her shower faucet went on the blink, it finally dawned on me that the fault might lie not in the remote or the faucet but in their user. I persuaded her to see her internist, and I called to let him know my concerns.

The internist called me right after her appointment to tell me she was being admitted to the hospital. She was wheezing, and a chest X-ray showed pneumonia. In addition, the brain M.R.I. showed several lesions — strongly suggestive of a tumor.

Multiple scans and doses of antibiotics later, the pneumonia was reclassified as a lung tumor and the brain lesions as metastases. My mother was put on steroids, and after considering and rejecting brain irradiation, she left her home near Boston and moved into a hospice five minutes from my house in Philadelphia.

She lived three more weeks — three weeks during which the only help she ever asked of me was to bring her chocolate milkshakes (which I did, often several times a day).

The night she died, I sat with her. She was unconscious by then, seemingly comfortable but breathing more and more rapidly, her skin growing more and more mottled. As I held her hand and mopped the bubbles from the corners of her mouth, I remembered a conversation we had had in the hospital in Boston right after her doctor had given me the results of her chest scan. I had told him that I would give the news to my mother.

My mother knew there were “masses” in her brain (she herself was calling them tumors), so I expected the news not to be a great surprise and, more than likely, welcome.

When I finished speaking, she looked concerned and frightened, making me wonder whether all her talk of wishing to die had been just that — talk.

“What if I don’t go quickly?” she asked. “What if this takes forever?”

“It won’t, Ma,” I answered, relieved at such an easy question. “Everything’s going to be O.K.”

“Are you sure?”

“Yes,” I replied, with the certainty I knew she craved and trusted. “All the tests confirm that it won’t be long now.”

Tears filled her eyes. “Do you remember, years ago, you promised you would help me if I ever needed it?”

I nodded.

“Well,” she said, “you just did.”

End-of-Life Hospice Care Underused

By E.J. MundellHealthDay ReporterWed Jul 25, 7:01 PM ET
WEDNESDAY, July 25 (HealthDay News) -- Too few Americans entering life's final phase are availing themselves of high-quality hospice care, despite the fact that Medicare covers the expense, experts say.
The situation is only going to become more problematic as the nation's "baby boomers" reach the end of their expected life spans in coming decades, according to two articles in the July 26 New England Journal of Medicine.
"Hospice care is underutilized -- only a third of Americans die under the care of hospice, and hospice care is free," noted the author of one article, Dr. Gail Gazelle, assistant clinical professor at Harvard Medical School. "Far too often, patients end up in an ICU, rushed to the emergency room, and they end up dying there, when really they would much rather have died in their own home," she added.
According to Gazelle, many of these patients avoid hospice, because they -- and often their doctors -- believe end-of-life care means they have "failed" in the face of disease. "They often view it as, 'OK, someone is telling me to crawl into my bed and die,'" she said. In reality, many hospice patients lead full, mobile and high-quality lives for months, Gazelle said.
There's also the misperception that hospice is expensive. Too often, terminal patients don't realize that Medicare and private insurance cover the full cost of hospice care.
And yet those aren't the only factors keeping terminal patients from the pain management and emotional support that comes with hospice, say oncologists Dr. Ingrid Katz, of Beth Israel Deaconess Medical Center, and Dr. Alexi Wright, of the Dana-Farber Cancer Institute, both in Boston.
In a second journal article, they recounted the story of one Boston-area patient, Joanne Doolin, a 64-year-old mother of three with terminal colon cancer.
Doolin did not choose to enter hospice care. She understood that the service was covered by Medicare, but she also knew that coverage had its limits. As a prerequisite to enter hospice care, Doolin, who was unable to eat on her own, would have been forced to give up intravenous feeding, an expensive service for which she would not be reimbursed. "If she had gone on hospice care and not received [feeding], she would've died within a couple of days," said Wright, a fellow in hematology/oncology at Dana-Farber.
So, Doolin opted to stick with hospital-based chemotherapy and intravenous feeding instead. "Because she got this nutritional support, she lived for more than a month and got to see her daughter get married," said Wright.
Doolin's condition did deteriorate soon after, however. She and her family found themselves scrambling for some kind of dignified, palliative care in the woman's last days. "There shouldn't have been a single barrier to her receiving hospice care the night that she needed it," Wright said. Family and friends in the community worked together to help get Doolin the care she needed, "but her dying experience was a near-disaster," Wright said.
That's because gaps still exist when it comes to items that Medicare, as well as much private insurance, will reimburse for hospice patients. Intravenous nutrition is one such item, as are chemotherapy drugs that might extend -- but not save -- a cancer patient's life. Entering hospice care, "patients often have to give up medicines that are helping to support them, make them feel better, helping them live longer," Wright said.
She believes in an "open access" system where these needs are taken into account. Building such a system might mean the creation of larger hospice organizations, however, so that the cost of expensive therapies could be spread over a larger patient population, Wright said.
But Gazelle stressed that hospice continues to meet or exceed the expectations of terminally ill patients and the people who love them. In fact, one recent survey found that 98 percent of family members said they would strongly recommend hospice care to others in need.
And hospice isn't just focused on dying cancer patients. According to the National Hospice and Palliative Care Organization, about 40 percent of U.S. hospice admissions now involve patients with end-stage heart disease, dementia, lung disease or stroke.
Still, "people need to understand that hospice is about living," Gazelle said. "It's about living as well as you can when life has dealt you a bad deck of cards. Having your dignity, your quality of life, as little physical and emotional suffering as possible -- that's what hospice can do for people."
Hospice care focuses on the patient, of course, but also on those affected by his or her illness, Gazelle added. Counseling and support is made available to caregivers and can last for months after the patient's death. "To know that their family is going to be attended to is critically important for people near the end of life," said Gazelle, who is also president of the medical advocacy group MD Can Help.
But the fact remains that a full third of hospice patients enter the service only in the last week of their life -- even though Medicare covers six months of this type of care. "That's very, very sad," Gazelle said.
She and Wright believe things are about to change, however.
"Baby boomers are going to turn all of this around," Gazelle said. "They are so empowered around their health care and the health care of their loved ones -- they're going to push hard to make sure that their needs are met."
Wright agreed. "I think that we will see the reimbursement structure change dramatically over the next decade," she said. "Baby boomers have received the best medical care imaginable for their entire lives -- why should their death be any different?"
More information
Find out more about hospice and palliative care at the National Hospice and Palliative Care Organization.

Hospice care does not hasten death, study shows

Thu Apr 12, 2007 10:58AM EDT
By Megan Rauscher
NEW YORK (Reuters Health) - Researchers hope a new study will help dispel the myth that medications used in a hospice to relieve pain and other symptoms hasten death. On the contrary, hospice care may actually prolong life, they've found.
"This should be reassuring to those faced with life-threatening illness and their families who are considering hospice care," Dr. Stephen R. Connor of the National Hospice and Palliative Care Organization based in Alexandria, Virginia, told Reuters Health.
Hospice care is not "giving up." It is choosing to live life fully to the end, he said.
Connor and colleagues analyzed the survival of 4,493 terminally ill patients who died within a 3-year period. A total of 2,095 of them received hospice care. Survival was measured as the time to death after a defined "indicative date" of the beginning of the terminal stage of illness.
The team reports in the Journal of Pain and Symptom Management that hospice patients lived an average of 29 days longer than non-hospice patients.
"Hospice professionals have often seen patients improve after admission to hospice care," Connor said. "We examined this phenomenon and found that in our study overall patients lived about a month longer while under hospice care."
http://www.reuters.com/article/healthNews/idUSCOL25387220070412?feedType=RSS