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.

Palliative care improves outcomes for seniors

Fewer emergency room visits, less depression

Seniors in long-term care experienced a significant reduction in emergency room visits and depression when receiving palliative care services, according to a recent collaborative study by researchers at Hebrew SeniorLife's Hebrew Rehabilitation Center (HRC) and Institute for Aging Research, both affiliated with Harvard Medical School (HMS).

The results of the study, published today in The Gerontologist, demonstrate the potential for improved end-of-life quality of care when palliative services are implemented in a long-term care setting.

The researchers analyzed the composite outcomes of utilization patterns, depression, pain and other clinical indicators of 250 long-term care patients at Hebrew Rehabilitation Center, half of whom received palliative care services, over a two-year period. Those who received palliative care had about half as many emergency room visits and significantly less depression.

"The national health care crisis has created a mandate to cut costs while improving care for millions of aging Americans who would otherwise experience frequent hospitalizations and futile aggressive care in their last months," says Jody Comart, Ph.D., palliative care director at Hebrew SeniorLife and the study's lead author.

"Many patients and families fear a painful, undignified death. The palliative care team is an elegant model that can improve care for long-term care residents and, at the same time bring down costs. This study showed a decrease in emergency room visits for palliative care patients, avoiding an often frightening event for patients and families, while decreasing the high cost of this expensive service for our health care system.

The Palliative Care Program at HRC combines medical, emotional and spiritual support services provided by an interdisciplinary team — a palliative care physician, clinical nurse specialist, chaplain, social worker and psychologist — providing the expertise and structure for improved symptom management and earlier identification of residents' goals for care.

According to Comart, providing palliative care services in a long-term care setting can offer significant benefits to patients and their loved ones:

- Patients and families often face very intense, emotionally laden and ethically burdensome decisions about treatment options.
- Palliative care provides them with medical and technical information that fosters informed conversations about end-of-life care — often for the first time.
- By treating pain and other symptoms, decreasing unnecessary hospitalizations and helping patients find closure during their final days, palliative care can reduce patient suffering and ease the burden on families.

"Some patients prefer less aggressive treatment and improved quality of life, while others want intensive interventions that may involve hospitalization and procedures," Comart explains. "Whatever the choice, patient-centered care is the primary goal, focusing on treatment that is consistent with the resident's wishes or, in the case of patients who are unable to comprehend the decisions at hand, with prior stated wishes."