Physicians who prefer hospice care for themselves more likely to discuss it with patients

Despite preferences for their own care, many physicians still delay hospice discussions with patients

Although the vast majority of physicians participating in a multiregional study indicated that they would personally enroll in hospice care if they received a terminal cancer diagnosis, less than one-third would discuss hospice care early in the course of treating a terminally ill cancer patient. A research letter published online in JAMA Internal Medicine also identifies factors that increased the likelihood that physicians would choose hospice care for themselves and examines how their preferences relate to the timing of end-of-life care discussions with patients.

"Having timely discussions with terminally-ill cancer patients to establish goals for end-of-life care is important to maximize the quality of patient care. But by and large we're not doing a good job at having these discussions early on," says lead author Garrett Chinn, MD, MS, of the Massachusetts General Hospital Division of General Medicine. "We know that patients facing terminal illness often wish to spend their remaining days at home, surrounded by loved ones. Since end-of-life care in the U.S. often stands in stark contrast to these preferences, it's important to identify factors that may facilitate cost-effective care that supports patient preferences."

The current study was conducted as part of the Cancer Care Outcomes Research and Surveillance (CanCORS) study, a consortium of centers across the country measuring the quality of care delivered to 10,000 patients with newly diagnosed lung or colorectal cancer. This report reflects the answers of close to 4,400 physicians caring for cancer patients – including primary care physicians, surgeons, oncologists, radiation oncologists and other specialists – to two survey questions.

Respondents were asked to indicate how strongly they agreed with the statement, "If I were terminally ill with cancer, I would enroll in hospice." They also were asked when they would discuss hospice care with an asymptomatic patient with terminal cancer who they estimated had 4 to 6 months to live – right away, when symptoms first develop, when no more options are available to treat the cancer, when the patient is admitted to the hospital, or when the patient or family asks about hospice care.

In their response to the question about personal hospice enrollment, 65 percent reported strong agreement with the statement, and 21 percent indicated they agreed "somewhat." Physicians who were female, who cared for more terminally ill patients or who worked in managed care settings were more likely to indicate strong agreement, while surgeons and radiation oncologists were less likely than primary care physicians or oncologists to do so.

Only 27 percent of respondents overall indicated they would discuss hospice care with the described patient "now." Waiting until symptoms appear was the choice of 16 percent; 49 percent would bring it up when no more therapeutic options were available; and upon hospital admission or when asked by a patient or family member each were chosen by 4 percent. Among physicians who strongly agreed that they would personally enroll in hospice care, almost 30 percent responded that they would discuss hospice care with the patient 'now,' while about 20 percent of all other respondents would do so.

"Our results suggest that most doctors would want hospice care for themselves, but we know that many terminally ill cancer patients do not enroll in hospice," says Nancy Keating, MD, MPH, of the Harvard Department of Health Care policy, senior author of the report. "In the overall CANCORS study, only about half of the patients who died of metastatic lung cancer had ever discussed hospice care with their physician. Our findings suggest that doctors with more negative personal preferences about hospice care may delay these discussions with patients, which indicates they may benefit from learning more about how hospice can help their patients."

Chinn adds, "Although a physician's personal care preferences may be quite important, we still do a poor overall job having timely end-of-life care discussions with our terminally-ill cancer patients. A lack of knowledge about guidelines for end-of-life care for such patients, cultural and societal norms, or the continuity and quality of communication with patients and family members are also factors that might act as barriers preventing physicians from 'practicing what they preach' in end of life care."

Misunderstanding of Palliative Care Leads to Preventable Suffering

“Identity Problem” As Public, Patients, and Doctors Confuse Palliative Care with End of Life Care

A new review says palliative care’s association with end of life has created an “identity problem” that means the majority of patients facing a serious illness do not benefit from treatment of the physical and psychological symptoms that occur throughout their disease. The editorial is co-authored by palliative care experts at Harvard Medical School, Massachusetts General Hospital, the American Cancer Society, and Johns Hopkins University, and appears in the New England Journal of Medicine. The authors say palliative care should be initiated at the same time as standard medical care for patients with serious illnesses, and not brought up only after treatment has failed.

The authors say for palliative care to be used appropriately, clinicians, patients, and the general public must learn the fundamental differences between palliative care and hospice care, a distinction that is not well-known. Seven in ten Americans describe themselves as “not at all knowledgeable” about palliative care, and most health care professionals believe it is synonymous with end-of-life care. While both are intended to relieve suffering, hospice care provides care for people in the last phases of an incurable disease so that they may live as fully and comfortably as possible. Palliative care focuses on helping patients get relief from symptoms caused by serious illness and is appropriate at any age or stage in a serious illness. (For more information, see: "Palliative Care" on cancer.org.)

Adding to that is the fact that debates over “death panels,” physician-assisted suicide, and other factors have made policymakers reluctant to devote resources to initiatives perceived to be associated with death and dying. The authors point to lower levels of government funding for palliative care research compared to funding for other specialties.

“The practice and policy behind palliative care must be considered independently from end-of-life care,” write the authors. “Palliative care should no longer be reserved exclusively for those who have exhausted options for life-prolonging therapies.”

The editorial presents clinical, economic, and political cases to show the value of earlier palliative care, and use them to propose initial priorities for clinicians and policymakers to integrate early palliative care into practice. The authors say implementing earlier palliative care would not only improve quality of life, but would also reduce spending and help patients with advanced cancer clarify their treatment preferences. And evidence shows patients who are given palliative care early on even have better outcomes.

Article: Early Specialty Palliative Care — Translating Data in Oncology into Practice; N Engl J Med 2013;369:2347-51, doi: 10.1056/NEJMsb1205469

Customized Palliative Care Models Improve Care and Reduce Health Care Costs

For high-risk geriatric patients, improved palliative care that is matched to their changing needs at home can reduce emergency room visits, reduce health care costs, and improve overall care. Current gaps in policy and practice that block implementation of these beneficial customized care models are presented in the article "Research Priorities in Geriatric Palliative Care: Policy Initiatives," published in Journal of Palliative Medicine, a peer-reviewed journal from Mary Ann Liebert, Inc., publishers. The article is available on the Journal of Palliative Medicine website.

Kathleen Unroe, MD, MHA, Indiana University School of Medicine, Indianapolis, and Diane Meier, MD, Mount Sinai School of Medicine, New York, NY, provide an insightful overview of the challenges in meeting the complex health care needs of the frail, seriously ill elderly population. They identify gaps in policy-related research related to implementation and scale-up of effective care models, payment reform, the development of quality measures, and strategies for workforce shortages and hospice reform.

This study was supported by The National Institute on Aging (NIA) Claude De. Pepper Older Americans Independence Center at the Icahn School of Medicine at Mount Sinai School of Medicine.

Journal of Palliative Medicine is the official journal of the Center to Advance Palliative Care (CAPC) and an official journal of the Hospice and Palliative Nurses Association.

“Our ability to relieve the stress, symptoms, and suffering associated with advanced illness has never been greater," says Charles F. von Gunten, MD, PhD, Editor-in-Chief of Journal of Palliative Medicine and Clinical Professor of Medicine, Ohio University. "The challenge is to make that ability practically available to those who need it. This is particularly true for high-risk geriatric patients.

About the Journal
Journal of Palliative Medicine, published monthly in print and online, is an interdisciplinary journal that reports on the clinical, educational, legal, and ethical aspects of care for seriously ill and dying patients. The Journal includes coverage of the latest developments in drug and non-drug treatments for patients with life-threatening diseases including cancer, AIDS, cardiac disease, pulmonary, neurological, and respiratory conditions, and other diseases. The Journal reports on the development of palliative care programs around the United States and the world and on innovations in palliative care education.

Hospice workers struggle on front lines of physician-assisted death laws

Laws that allow physician-assisted death in the Pacific Northwest have provisions to protect the rights of patients, doctors and even the state, but don’t consider the professionals most often on the front lines of this divisive issue – hospice workers who provide end-of-life care.

The existing system, a new analysis concludes, has evolved into a multitude of different and contradictory perspectives among hospice organizations and workers, who historically have opposed physician-assisted death but now are the professionals taking care of most of the people who use it.

The study – titled “Dignity, Death and Dilemmas” - was just published in the Journal of Pain and Symptom Management by researchers from Oregon State University, and outlines a complex system in which many well-intentioned caregivers struggle to organize their thoughts, beliefs and actions when dealing with a concept they traditionally oppose. It was based on an analysis of 33 hospice programs in Washington state.

When first proposed, it was feared by some that physician-assisted death might displace the palliative and supportive care offered by hospice. Now, in practice, between 85-95 percent of the people in Oregon and Washington who choose assisted death also use hospice – but the interplay they have with their caregivers can vary widely.

“It might seem a little surprising that most people who use physician-assisted death also use hospice,” said Courtney Campbell, the Hundere Professor in Religion and Culture in the OSU School of History, Philosophy and Religion. “Some hospice workers were originally concerned this concept would make them unnecessary, but in fact the level of hospice usage has actually increased.”

Hospice is a national program in which trained professionals provide care to terminally ill patients, ensuring they get proper medical care, adequate pain control, are involved in decision-making and have other needs met in a home environment. They work with both the patient and family to help make death a natural and accepted part of life.

However, hastening or actually causing death is not an accepted part of the hospice philosophy, even though hospice programs acknowledge the right of patients to make that choice where it’s allowed by law. But balancing core beliefs, such as compassion and non-abandonment of a patient, with the new laws has been difficult at best for hospice professionals, Campbell said.

“About 75 percent of hospice organizations will not allow their workers to even be present when a fatal dose of medication is used,” Campbell said.

The reaction in hospice to physician-assisted death varies from one national organization to another, from one agency to another, from one worker to another. There is little consistency to many complex questions about how, whether, and when hospice workers will get involved as individuals they care for make this choice. Approaches can range from outright opposition to non-participation or non-interference.

In recent years it’s become even more difficult as assisted-death has become politicized, Campbell said. Even the words used in describing the serious issues involved are emotionally-charged and inherently contentious, the researchers noted in their report, making reference to legislation that embraced “ending life in a humane and dignified manner” while working its way around such topics as “suicide, assisted suicide, mercy killing and homicide.”

Somewhat caught in the middle, and caring for the people who are affected by those laws, are the hospice workers with marginal guidance and conflicted reactions, researchers said.

“The conventional approach to the question of legalized physician-assisted death . . . has missed the issue of how the requirements of a new law are carried out by the primary caregiving institution, hospice care,” the researchers wrote in their report.

The OSU research offered no simple solutions to this issue, but rather outlined a broad list of questions that could form the basis for more informed discussions – either among hospice providers, the organizations they work for or the general public.

These includes such topics as the hospice mission, patient access to information, questions about legal options, how to discuss emotional or religious factors, response to specific patient requests, documentation of conversations, responsibility to the patient’s family, and many other issues.

Improved Empathic Communication Between Hospice Teams and Caregivers Needed

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 family caregivers 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.

Palliative Care And Patient Choices In Advance Care Directives

Advance care directives allow patients to provide instructions about their preferences for the care they would like to receive if they develop an illness or a life-threatening injury and lose the capacity to make decisions for themselves. While many people may assume that patients have strong preferences for the type and aggressiveness of care they wish to receive near life's end, a new study by researchers at the Perelman School of Medicine at the University of Pennsylvania suggests that for many patients, preferences for end-of-life care are constructed on the spot and heavily influenced by the ways in which the options are presented. Specifically, the investigators found that even when it comes to such seemingly personal decisions as end-of-life care, people tend to accept options that are presented as the default, much as they accept the default in choosing automobile insurance or whether to contribute to 401(k) programs. The research is published in the February 2013 issue of Health Affairs.

"We found that default options have large influences on the care patients choose near the ends of their lives," said Scott D. Halpern, MD, PhD, MBE, assistant professor of Medicine, Epidemiology, and Medical Ethics and Health Policy, and director of the Fostering Improvement in End-of-Life Decision Science (FIELDS) Program at Penn. "Although this result will be surprising to many, it makes a lot of sense on closer inspection - how could we expect patients to have deep-seated preferences about choices that are rarely encountered, difficult to contemplate, and about which we do not get feedback as to whether previous, similar, choices did or did not promote our broader goals?"

Halpern said that despite national policies and laws promoting the use of advance care directives, there has never before been a study comparing different types of advance directives. As a result, clinicians have no way of knowing what type of directives to recommend for patients to help them make and document these difficult decisions. To explore how patients make these decisions, the researchers randomly assigned 132 seriously ill patients with life expectancies of two years or fewer to complete one of three types of advance directives. Two types had end-of-life care options already checked on the form - resulting in a "default" choice - but one of these prioritized care focused on comfort, and the other, care focused on extending life by all means possible. The third type was a standard advance directive with no options pre-selected. On each form, patients could easily choose from among all possible options.

The research team found that overall, most of these seriously ill patients preferred comfort-oriented care, but the default options influenced those choices dramatically. For example, 77 percent of patients in the comfort-oriented default group chose an overall plan of care that prioritized comfort, while 43 percent of those in the life-extending default group rejected that default and selected comfort-oriented care instead. Among the standard advance directive group with no option already selected, 61 percent of patients selected comfort-oriented care. The authors found similarly large influences of default options on patients' desires to receive feeding tubes, mechanical ventilation, dialysis, or admission to an intensive care unit.

The researchers note that what makes the findings eye-opening is that these large differences were not due to patients just failing to recognize the default. Instead, after patients completed their directives and had them signed by a witness, the team called patients, helped them focus on the default option used (or not used) in their assigned directive, and asked them if they would like to change any of their choices. Only after patients had the opportunity to change their stated preferences did the directives become parts of the patients' medical records. The researchers found that none of these patients changed their original selections about their preferred care plans. Furthermore, patients in all groups expressed equally high satisfaction with their advance care planning, suggesting that patients were content to be guided in making such decisions.

"This study strongly suggests that many patients do not hold deep-seated preferences regarding their end-of-life care," said Halpern. "However, the study does not yet tell us whether we should use advance directives with default options in clinical practice. Instead, this work provides motivation for future research examining whether using default options in advance directives may improve important outcomes, including patients' receipt of wanted and unwanted services, resource use, survival, and quality of life."

Hospice use rises; So does aggressive care

IMAGE: A hospice stay of less than three days suggests patients may not be receiving the comfort and psychological support that hospice is meant to provide. Darker states have a higher percentage of hospice stays of less than three days.

Credit: Brown University


A study published Feb. 6 in the Journal of the American Medical Association finds that while more seniors are dying with hospice care than a decade ago, they are increasingly doing so for very few days right after being in intensive care. The story told by the data, said the study's lead author, is that for many seniors palliative care happens only as an afterthought.

"For many patients, hospice is an 'add-on' to a very aggressive pattern of care during the last days of life," said Dr. Joan Teno, professor of health services policy and practice in the Public Health Program at Brown University and a palliative care physician at Home & Hospice Care of Rhode Island. "I suspect this is not what patients want."

The findings of Teno and her co-authors come from their analysis of the Medicare fee-for-service records of more than 840,000 people aged 66 or older who died in 2000, 2005, or 2009. They looked at where seniors died, what medical services were provided during their last 90 days of life, and how long they received them.

Over the course of the decade, hospice and hospital-based palliative care teams have made major inroads in the health care system, essentially becoming mainstream. But a deeper analysis of patients' histories in the data, Teno said, shows that in many cases the fee-for-service system still fell short of ensuring the full measure of comfort and psychological support that hospice is meant to provide dying seniors.

Data on dying

For example, while the proportion of dying seniors using hospice care increased to 42.2 percent in 2009 from 21.6 percent in 2000, the proportion who were in intensive care in the last month of life also increased to 29.2 percent in 2009 from 24.3 percent in 2000. More than a quarter of hospice use in 2009, 28.4 percent, was for three days or less, and 40 percent of those late referrals came after a hospitalization with an intensive care stay.

In 2008 the sister of study co-author Dr. David Goodman, director of the Center for Health Policy Research and a professor at the Geisel School of Medicine at Dartmouth College, had advanced cancer and died during a procedure undertaken the day before she was to enter hospice. Goodman said that aggressive care is the norm at many medical centers.

"Poor communication leading to unwanted care is epidemic in many health systems," he said. "The patterns of care observed in this study reflect needlessly painful experiences suffered by many patients, including my sister, and other friends and family members of the research team."

Among all patients, the percentage referred to hospice for just three days or less doubled over the decade to 9.8 percent from 4.6 percent.

"With this pattern of going from the ICU to hospice, these dying patients are getting symptom control late and can't benefit as much from the psychosocial supports available were there a longer hospice stay," Teno said.

Among all patients, the average amount of time with hospice in the last 30 days of life rose to 6.6 days in 2009 from 3.3 days in 2000, but intensive care days rose too: to 1.8 days in 2009 compared to 1.5 days in 2000.

Meanwhile, although seniors who died in 2009 were 11 percent more likely to die at home and 24 percent less likely to die in the hospital than those who died in 2000, the proportion who were transferred from one location to another in the last three days of life — a significant burden on patient and family — rose to 14.2 percent in 2009 from 10.3 percent in 2000. Also, the average number of transitions a patient made in the last 90 days of life increased to 3.1 in 2009 from 2.1 in 2000.

These trends reflect more ICU, more repeat hospitalizations, and more late transitions, said Vincent Mor, professor of health services policy and practice, the paper's senior author.

Reasons and recommendations

The apparent reasons for the observed increases are a mix of regional differences in physician culture, the financial incentives of fee-for-service care, and the lack of timely communication with patients and their family about the goals of care, Teno said.

Teno and her colleagues found that people with more predictable causes of death - cancer — were much more likely to die at home and with hospice care than patients who suffered from chronic obstructive pulmonary disease, a condition with a less certain end-of-life trajectory.

But in data not published in the paper, the researchers also observed wide state-by-state variations in late hospice referrals. In fact, her home state of Rhode Island had one of the highest rates of short stays in hospice. This variation is a product not of differences in patient health, she said, but differences in local medical culture around palliative care.

As importantly, Teno said, fee-for-service reimbursements create financial incentives for doctors and other providers to pursue aggressive measures rather than to sit down with family members and patients to develop an end-of-life care plan that incorporates their preferences.

"We need to transform our health care system, from one based on fee-for service medicine for the majority of Americans, to one where people are not paid for just one more ICU day," Teno said. "Instead we need a system where doctors and hospitals are paid for delivering high-quality, patient-centered care that understands the dying patient's needs and expectations and develops a care plan that honors them. We need publicly reported quality measures that hold institutions accountable to the standard of patient-centered care for the dying."

By revealing the patterns of where, when, and for how long patients received palliative services around the time of their death, the study begins to provide such data.

Guided Care Provides Better Quality of Care for Chronically Ill Older Adults

Patients who received Guided Care, a comprehensive form of primary care for older adults with chronic health problems, rated the quality of their care much higher than patients in regular primary care, and used less home care, according to a study by researchers at Johns Hopkins University. In an article published online by the Journal of General Internal Medicine, researchers found that in a 32-month randomized controlled trial, Guided Care patients rated the quality of their care significantly higher than those in normal care, and were 66 percent more likely to rate their access to telephone advice as excellent or very good. Patients also had 29 percent fewer home health care visits.

“As more practices move to a comprehensive care model, Guided Care’s team care approach can help ensure better quality care and more satisfied patients,” said Bruce Leff, MD, co-investigator of the study and professor with the Johns Hopkins School of Medicine and Johns Hopkins Bloomberg School of Public Health. “In addition, the nearly one-third reduction in home care use highlights how providing comprehensive care for high-risk patients can reduce health service utilization.”

According to the study, Guided Care patients also experienced, on average, 13 percent fewer hospital re-admissions and 26 percent fewer days in skilled nursing facilities. However, only the difference in home health care episodes is statistically significant. In earlier reports, physician satisfaction was higher and family caregiver strain was lower with Guided Care.

Guided Care is a model of proactive, comprehensive health care that can help primary care practices transform into patient-centered medical homes. Guided Care focuses on improving care for patients with multiple chronic health conditions. Guided Care teams include a registered nurse, two to five physicians, and other members of the office staff who work together to perform home-based assessments, create an evidence-based care guide and action plan, monitor and coach the patient monthly, coordinate the efforts of all the patient’s healthcare providers, smooth transitions between sites of care, promote patient self-management, educate and support family caregivers, and facilitate access to community resources.

The multi-site, randomized controlled trial of Guided Care involving 49 physicians, 904 older patients and 319 family members recently concluded in eight locations in the Baltimore-Washington, D.C.