CLEVELANDWhile the majority of Americans wish to die in the
comfort of their homes, most are actually dying in institutions,
often with pain and other symptoms poorly controlled.
Desire vs Reality in End-of-Life Care
A 1996 Gallup survey commissioned by the National Hospice
The majority of patients who die in institutions could be well cared
for at home, said Donna S. Zhukovsky, MD, director of the Cancer Pain
Clinic, Palliative Medicine Program, Cleveland Clinic Foundation. But
there are a number of barriers to closing the gap between desire and
reality in end-of-life care, including a lack of physician education
in end-of-life care, the burden placed on families of patients who
wish to die at home, and the underuse of hospice programs.
Dr. Zhukovsky spoke at a conference based on the Education of
Physicians in End-of-Life Care (EPEC) program, developed by the
American Medical Association in conjunction with the Robert Wood
A short video produced by EPEC accompanied Dr. Zhukovskys talk.
In it, several physicians speak candidly about the deficiencies in
end-of-life care that existed in their own training.
EPEC project director Charles F. von Gunten, MD, PhD, is shown
expressing his frustration with physicians who tell him that there is
nothing left to do for their dying patients. At one
point, another physician says, We need to be confronting our
own mortality and dis-ease with emotions. We need to
believe dying people are important.
Near the videos conclusion, Dr. von Gunten states that
end-of-life care combines elements of the scientist, humanist,
friend, and comforter: All the things that have drawn people into the
medical profession since the beginning.
Dr. Zhukovsky said that before the EPEC program was developed, there
had been no standardized medical education for end-of-life care. Only
4 of 126 US medical schools require a separate course in the care of
the dying. The EPEC program was established to provide physicians
with new skills and competencies in end-of-life care. Nurses and
other health care professionals have also found it beneficial, she
In addition to the lack of appropriate education, certain
attitudes within medicine have contributed to the gaps in end-of-life
care in this country, Dr. Zhu-kovsky said. Some physicians may
view palliative medicine as hand-holding rather than as a
research-based practice of medicine, she said.
Physicians may also be uncomfortable with delivering bad news and
facing the imminent death of their patient. Adverse legislation,
including triplicate prescription pads, and unwarranted fears of
psychological addiction contribute to physician reluctance to
prescribe narcotic drugs for pain relief.
These shortcomings within the profession have, for the most part,
remained unrecognized by the public. In 1997, an American Medical
Association Public Opinion Survey asked the question: Do you
feel your doctor is open and able to help you discuss and plan for
care in case of life-threatening illness? Seventy-four percent
of respondents said yes.
Hospice, which started in the United States in the early 1970s and
received Medicare reimbursement beginning in 1982, addresses the
social, financial, psychological, and spiritual needs of patients and
families, as well as physical care. Yet hospice continues to be
In 1995, hospice cared for only 17% of dying patients, and the median
length of stay was declining. In 1998, the median length of stay was
20 days. This doesnt give hospice time to perform their
interventions, Dr. Zhukovsky said. Were not
Although 90% of Americans believe it is a family responsibility to
provide care, Dr. Zhukovsky said, many families feel unprepared to
take care of a dying family member at home. This contributes to the
large number of patients in institutions.
Caregiving also carries the potential for financial devastation. One
study found that 20% of family members quit work to provide care, 31%
of families lost their savings, and 40% of families became
impoverished as a result of caring for a dying member, she said.
Forty percent of patients worry about being a burden to their
families. It affects their decisions regarding treatment, Dr.
Zhukovsky said. They may make treatment choices that lead to an
earlier demise, or consider physician-assisted suicide, in order to
prevent their family from running out of money.