Communicating Hospice and End-of-Life Issues
A surprising study just published in the Journal of Palliative Care found that many terminally-ill patients are not referred to hospice care simply because their physicians do not have a basic understanding of hospice eligibility and benefit guidelines.
Dr. Elizabeth Bradley of the Yale School of Medicine and colleagues surveyed 231 Connecticut doctors representing a variety of specialties. More than 70 percent of the physicians reported being "very satisfied" with their experiences with hospice, yet they referred only slightly more than half (54.8 percent) of their terminally-ill patients to hospice programs. Twelve percent of the doctors did not refer a single terminally-ill patient for hospice care.
The researchers noted that less than half of the doctors knew that patients who were expected to die within six months were eligible for inpatient hospice care. They found that physicians with board certification were more likely to refer a patient to hospice care. Oncologists referred the highest percentage of eligible patients (68 percent); cardiologists the least (40 percent).
The authors recommended aggressive educational efforts targeted at physicians to make them aware of fundamental facts about hospice eligibility and benefit rules. And they may actually be getting their wish.
The whole field of hospice care is finally emerging from its hushed confines as a little-known medical option for the terminally ill to a publicly accepted—and widely hailed—component of the total healthcare spectrum.
The Journal of the American Medical Association recently focused an entire issue (November 15, 2000) on care for patients with advanced disease. Prior to its publication, the Journal held a symposium with experts in the field of palliative (symptom-relieving) care. Their conclusion? The use of palliative care—especially for pain relief—is finally gaining acceptance by a growing number of U.S. doctors. Also, state and federal government agencies are now starting to fund more palliative care initiatives, although still nowhere near the level they should be.
One major stumbling block, they said, is the federal Medicare program. Medicare will still not pay for many outpatient prescription drugs to relieve chronic cancer pain. And the Medicare hospice benefit is now effectively a barrier to end-of-life palliative care. Patients can get hospice care only when they have been told they have six months or less to live, and they must give up all other Medicare benefits.
Hospice care is a program of medical and illness-related assistance for when a person with a terminal disease chooses to die at home with the support of family, friends and caring professionals. Hospice care emphasizes comfort measures and counseling to provide social, spiritual and physical support to the dying patient and his or her family. All hospice care is provided under professional medical supervision. Over 90 percent of hospice care is provided in the patient’s home, although it can also take place in nursing homes or in most inpatient settings.
Two primary functions of hospice care are to provide relief from pain and to provide support for both the terminally ill patient as well as their family.
The physical pain arising from a terminal illness may be debilitating, frightening and even dehumanizing. Hospice providers have the skills and resources to permit persons to live as pain-free, as comfortable, and as full a life as possible.
In addition to providing for the physical comfort of the dying person, hospice provides social and spiritual support for the patient and his or her family. This support takes the form of time off for the primary caregiver, personal care, nutritional counseling, pastoral counseling, grief counseling, and even help with legal and funeral arrangements.
From the family’s perspective, a hospice program provides benefits before, during and after the death of a loved one. Nursing and medical support is available during the illness, and hospice nurses are even on call at the time of death. In addition, they also provide a range of bereavement services for both adults and children.
An earlier article in The Journal of the American Medical Association addressed one of the most frustrating problems with end-of-life care: conflicts between physicians reluctant to provide aggressive but futile treatment to terminally-ill patients, and the patients’ families who are often reluctant to give up hope.
According to background information cited in the article, physicians may feel their competence or judgment is not trusted; they may turn to legal or ethics consultants for help with what they feel is a wrong decision by the patient or the patient’s family. In turn, families may feel isolated, misunderstood, or abandoned and begin to doubt the healthcare team’s commitment to the patient’s well-being.
"Families may disagree with clinicians because they do not understand the medical situation," wrote Dr. Susan Dorr Goold and colleagues from the University of Michigan Medical Center and Ann Arbor Veterans Affairs Medical Center. They say that family members often misunderstand the medical facts or are unprepared to hear the patient’s diagnosis or prognosis. Conversely, physicians themselves may be uncomfortable discussing death or death-related issues and be troubled by the thought of a medical "failure."
And yet, when end-of-life issues are actually discussed, the patients themselves become much more satisfied with their overall medical care.
According to a report published in the Journal of General Internal Medicine, elderly patients with chronic illnesses become much more satisfied with their physician and general medical care when subjects such as advance directives are honestly and openly discussed.
Dr. William Tierney of the Roudebush VA Medical Center in Indianapolis and colleagues evaluated the cases of 686 seriously-ill patients and found greater patient satisfaction with care when frank discussions about advance directives took place with their doctors.
More than half of the patients considered their medical care "excellent" after advance directives were discussed, compared to a third (34 percent) who said the subject was never broached.
The authors suggested that such important end-of-life discussions "increase appreciation of the physician and the primary care he or she delivers." They therefore urged doctors to initiate discussions about advance directives and other sensitive issues, especially with seriously-ill patients. "These efforts seem to enhance the doctor-patient relationship, and the effects are both substantial and lasting."
SOURCES:
Journal of Palliative Care, December 22, 2000
Journal of General Internal Medicine, January 2001; 16:32-39
The Journal of the American Medical Association, 2000; 284:2460-2468, 2476-2482, 2495-2507
"Home Care Guide for Advanced Cancer," American College of Physicians (http://www.acponline.org)
Cancer Control; JMCC 1999: 6(2) 162-167
Internet Medicine, 1999; 4(9): 3,4
The Journal of the American Medical Association, 2000; 283:909-914
National Hospice and Palliative Care Organization (http://www.nhpco.org)
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