Options at Life’s End: UAB Expands Center For Palliative Care
ABSTRACT: Redesigning care reduces suffering from terminal and life-threatening disorders.
CME OBJECTIVE: The reader will have a better understanding of the objectives of palliative care and options available for patients and caregivers.
Christine S. Ritchie, MD, MSPH, no conflicts of interest; Rodney O. Tucker, MD, no conflicts of interest; Alan B. Stevens, PhD, no conflicts of interest
UAB's Center for Palliative Care (CPC) seeks to hasten the day when all Alabamians can count on care, comfort, companionship, and peace in advanced illness and at the end of life. The Latin root for palliation, palliare, means to shield or to cloak.
"Palliative care is a collaboration of professionals aimed at shielding and protecting patients from the violence of disease, especially at life's end," says Christine S. Ritchie, MD, MSPH, director of UAB's CPC and physician-investigator with the Birmingham Veterans Affairs (VA) Geriatric Research, Education, and Clinical Center. UAB's center has just expanded its services and joined the Division of Gerontology and Geriatric Medicine's growing number of quality-of-life programs.
The initiative comes at a time when the National Institute of Nursing Research (NINR), part of the National Institutes of Health, is seeking research solicitations on end-of-life care. The Robert Wood Johnson and Soros Foundations and the VA are advancing the field by offering research initiatives. Myriad issues are being addressed: clinical symptom management; communication among patients, families, and caregivers; ethical decision-making; and complementary and alternative medicine at the end of life. One major focus is the effect of terminal or advanced illness on family caregivers, particularly those caring for Alzheimer disease patients.
"When patients and family members recognize that further efforts to prolong life are neither desirable nor achievable, the transition from advanced illness to end-of-life care begins," Ritchie explains. The transition may also happen when disease-modifying medical therapy results in greater patient suffering than in its ability to prolong life. "This situation requires a serious discussion of patient and family hopes, which may include living fully, being with family, experiencing reconciliation, and having good symptom control and comfort care."
Beyond symptom control, CPC staff find critical indicators of good end-of-life experiences include access to needed services for both patients and caregivers; conflict resolution within the family, which should be patient-defined, specific, and coupled with recognition of human mortality; and compliance with patient-stated wishes for end-of-life care. Poorer outcomes at this stage result from inadequate symptom management and lack of attention to patient wishes and values about their care.
New Notion of Dying
| Palliative care is a collaboration of professionals aimed at shielding and protecting patients from violence of disease, especially at the life's end. |
"Medical advances are changing the nature of dying; this has great potential impact on our health-care system," CPC clinical program Medical Director Rodney O. Tucker, MD, notes. "Death is no longer as likely to occur from injury or infection, but slowly, and at an older age, as a result of chronic illnesses." This demographic shift increases the number of seriously ill and dying individuals as the quantity of caregivers plummets.
Emphasizing the need for substantial improvements in advanced illness and end-of-life care in the United States, Tucker offers a case study. "Recently, we were consulted on a patient with kidney and lung disease and early dementia, who had undergone recent cardiac bypass surgery. He was beyond a curative condition, and his care was quite complex. Suffering major postoperative complications, he developed severe vascular and arthritic pain, in addition to heart failure, and while hospitalized, stated he no longer desired to live in such discomfort.
"Working with his primary team, we instituted aggressive continuous infusion pain medication through a hospice partner, allowing him to return home, per his wishes, where he subsequently died comfortably and peacefully."
Expanding Need
In the US, palliative care is a rapidly developing field that evolved from the collective hospice experience. Last year, more than 950,000 dying Americans received care from the nation's 3300 hospice providers. Palliative care is a broader application of hospice concepts, applicable to patients with a significant burden of illness but who are much earlier in the disease trajectory. Palliative care can be integrated with curative or life-prolonging treatments, while hospice is explicitly noncurative.
"Many people think palliative care is what you do when there is nothing left to do," continues Ritchie, who was recruited from the University of Louisville to direct UAB's CPC. "This could not be further from the truth. Palliative care seeks to prevent and relieve suffering through early pain treatment and help for other physical, psychosocial, and spiritual problems." Anticipatory planning also is an important focus. Like hospice, palliative care integrates the psychological and spiritual aspects of patient care.
The CPC, founded in 2000, provides a wide range of interdisciplinary support for patients with significant illnesses. In 2004, the clinic moved to its new home at the William Clifford and Margaret Spain McDonald Clinic on the UAB campus, where physicians and staff have more room to provide a full range of services to meet local patients' nutritional, psychosocial, rehabilitative, and spiritual needs.
The Palliative and Supportive Care Clinics, held Wednesday and Friday, are available to any patient with a chronic, life-limiting illness, including cancer, heart failure, emphysema, Alzheimer disease, AIDS, and Parkinson disease. "We support patients through the multitude of problems encountered during and after treatment," Tucker continues. Interdisciplinary assistance is provided for symptoms, including pain, fatigue, and nausea, as well as attention to emotional and spiritual support, nutrition, and preservation of quality of life and dignity.
Research is integrated with clinical care, and studies aimed at symptom control and caregiver support are a major focus.
New Look at Caregiver Stress
The CPC works closely with the Center for Aging, where Associate Professor of Gerontology and Geriatric Medicine Alan B. Stevens, PhD, examines the effects of dementia on family caregivers.
In short, caregivers who make the difficult decision to place relatives into institutionalized care get no relief from depres-sion and anxiety. In fact, they suffer greater emotional trauma following their decision, according to a 4-year, multisite study of 1222 caregiver-patient pairs (JAMA. 2004;292[8]:961-967).
UAB was 1 of 6 sites in this first comprehensive analysis of emotional impact regarding transition from homes to long-term care facilities. The analysis targeted conditions that led to placement, nature of contact after institutionalization, and impact on health outcomes among caregivers following placement. The findings stand in sharp contrast to earlier reports by some of the same authors that death of a loved one improves caregiver depression.
"We must learn how to help caregivers who place relatives in long-term facilities," Stevens says. "We need to treat their emotional distress, educate them about the nature of long-term care and its impact on patient functioning, engage them in end-of-life planning, and prepare them for the eventual death of their loved one."
Spousal caregivers and family members who visited most frequently had the most difficult transitions, the research indicates. The National Institute on Aging and the NINR funded the study.
"With disappointing results, most early studies to improve end-of-life care focused on outcomes deemed important to health-care providers," Ritchie says. "Instead, we believe in identifying individual patient concerns, communicating them to the treating medical team, and repeating the process frequently until all concerns are addressed.
"Exciting future developments are symptom mechanism research, studies looking at novel treatments, therapeutic targets, and health-care delivery systems, coupled with use of telemonitoring to enhance patient assessment and care," she concludes. Ritchie and Tucker also stress the irreplaceable role of teamwork and interface with cultural norms.
The CPC, designed to promote palliative care throughout the medical community, works with community hospices and partners with community networks across the region.
For more information
Dr. Christine Ritchie
Dr. Rodney Tucker
Dr. Alan Stevens
1.800.UAB.MIST
mist@uabmc.edu
Published in UAB Insight, Spring 2005