|
|
Home | Current Issue | Past Issues | Search | Collections | CME | PDA Services | Subscribe | Contact Us | Help | ACP Online
|
Institution: Albert Einstein
Coll Med Sign In as Member or Subscriber
EDITORIAL
The Care of Dying Patients
15 January 1997 | Volume 126 Issue 2 | Pages
164-165
Ann Intern Med.
1997;126:164-165.
In our world of increasingly sophisticated medical technology,
there is growing concern that the care of persons facing death
is wanting and that many patients are dying in physical and
mental anguish. This deficiency in care at the end of life is
highlighted in the recent report from SUPPORT (the Study to
Understand Prognoses and Preferences for Outcomes and Risksof
Treatments) [1],
one phase of which is described in thisissue [2].
This study was a 5-year project designed to identifyand correct
problems in the care of patients approaching death.The project was
done at five hospitals across the United Statesand was funded by the
Robert Wood Johnson Foundation in theamount of $28 million.
Despite intense effort and dedicated input from many professionals,
the results of SUPPORT have been disappointing. Proposed
interventionshave had no clear effect on improving patient-physician
communication,facilitating the documentation of appropriate
do-not-resuscitateorders, decreasing the number of days spent in
intensive careunits, relieving pain, or reducing the use of hospital
resources.As Lynn and associates report [2],
family members of patientsin SUPPORT and HELP (the Hospitalized
Elderly Longitudinal Project)have confirmed that dying patients are
often left with a greatdeal of pain, anxiety, and dysphoria.
Why, despite our honest efforts, are we doing such an inadequate
job with end-of-life care? Why did SUPPORT fail even to begin
to alleviate the problems it set out to address? What are the
implications of the public’s perception that care is frequently
impersonal and mechanical? And, finally, what can be done about
this perception?
We must look beyond conventional explanations. There is no doubt
that many physicians lack good communication skills, do not
explain situations well, are trained to see death as failure,
and may be too aggressive in treating dying patients. It is
equally true that patients and families often have unrealistic
expectations and false hopes. But the problems go deeper than
that. There is a wide gap between what the public believes technology
is capable of doing and what technology actually accomplishes.
Only when serious illness strikes do families begin to realize
that physicians can often do little to change outcomes. It is
certainly not well appreciated that large gaps in medical knowledge
remain and that many diseases elude treatment. For patientsand
families who have so little knowledge of our failings, thetruth
comes as a shock. For example, no one has publicized thedismal
statistics about recovery from cardiopulmonary resuscitationin
elderly patients; the results are far different from whatis seen on
television [3].
Many patients and families are ambivalent about what to do when
serious illness strikes and death becomes a real possibility.
Despite the Patient Self Determination Act of 1990 and campaigns
to encourage written advance directives, only about 15% of persons
in the United States have executed such documents. Patientsare
confused about having to make life and death decisions farin
advance. How can one be sure about how much pain one wouldtolerate
to see a grandchild’s wedding or to spend a few moredays or weeks
with a loved one? This ambivalence also extendsto the hospice
movement. Hospice offers humane care with anemphasis on the relief
of both physical and mental pain. Butonly a small percentage of
patients avail themselves of thisopportunity, perhaps because
entering hospice means acceptingdeath and “defeat.”
Faced with overwhelmingly complex technology, patients in the
United States fear loss of autonomy. They may wish to be saved
by technology, but they fear that it will cause them to lose
control over their lives and experience a lonely and impersonal
death. Fear of losing control has led to increasing interestin
the “right-to-die” movement. Physician-assisted suicide,the
legalization of euthanasia, medical futility, and the activitiesof
Dr. Jack Kevorkian are discussed and debated throughout theUnited
States. The growing interest in alternative medicineis at least
partly due to a deep distrust of medical science.
Where will all of this lead? What can we do to resolve the justified
concerns of our patients? We cannot turn the clock back like
modern-day Luddites. Technology will not disappear. On the contrary,
it is more likely to become more sophisticated and make these
problems even more difficult to solve.
Because more than 50% of Americans die in hospitals [4],
ithas been suggested that special hospital units be established
to separate dying persons from other hospitalized patients [5].
Trained nurses and physicians could provide humane and dignified
care in such settings. However, although the proposal seemsto
make sense, it raises the specter of transferring seriouslyill
patients to the back room-the dying room-of the ward, aswas done
years ago.
Another option is to keep the dying patient out of the high-technology
milieu of the hospital. Most patients do not stay home when
death is approaching, even though they may initially have intended
to do so. Whether because of the panic of family members or
because of an inability to face the finality of death, most
patients find themselves in a hospital at the end. However,
other, more appropriate facilities, including extended care
centers, nursing homes, and hospice, provide end-of-life care.
Personal observations in a geriatric long-term care facility
have suggested that dying in such a setting may be much morein
keeping with the desires of patients and their families.
Significant change in the way we approach end-of-life care will
require at least two difficult adjustments. First, we must change
our cultural attitudes and accept death as a natural phenomenon.
This will not be easy to do and will not happen quickly. The
current debate over the right to die may help to focus society’s
viewpoints in this regard. Second, despite the apparent failure
of SUPPORT, our health care institutions must commit more resources
to improving end-of-life care. Hospitals will continue to have
little interest in altering their approach to the dying patient
unless public pressure for change increases.
Our society has not yet accepted the inevitability of death.We
are impressed by the steady extension of life expectancy,but we
forget that we have not extended, and probably cannotextend, our
lifespan much beyond 100 years. How we deal withthe final years of
life does much to define the kind of societywe have. We must provide
our patients with a peaceful and dignifieddeath, without pain and
with as little anguish and anxiety aspossible. We may finally
consider SUPPORT (a valiant attemptto correct a serious shortcoming)
a success if it is the beginning-andnot the end-of our
commitment.
Requests for Reprints: Arthur W. Feinberg, MD, Center for Extended
Care and Rehabilitation, North Shore University Hospital, 330
Community Drive, Manhasset, NY 11030.
| Author and Article Information
|
|---|
 Top Author & ArticleInfo  References |
|---|
North Shore University
Hospital, Manhasset, NY 11030
Requests for Reprints: Arthur W. Feinberg, MD,
Center for Extended Care and Rehabilitation, North Shore University Hospital,
330 Community Drive, Manhasset, NY 11030.
References
|
|---|
| TopAuthor & Article Info References |
|---|
1. A controlled trial to improve care for seriously ill hospitalized
patients. The study to understand prognoses and preferences for outcomes and
risks of treatments (SUPPORT). The SUPPORT Principal Investigators. JAMA.
1995;274:1591-8.
2. Lynn J, Teno JM, Phillips RS, Wu AW, Desbiens N, Harrold J, et al.
Perceptions by family members of the dying experience of older and seriously ill
patients. Ann Intern Med. 1997;126:97-106.[Abstract/Free Full Text]
3. Diem SJ, Lantos JD, Tulsky JA. Cardiopulmonary resuscitation on
television. Miracles and misinformation. N Engl J Med. 1996;334:1578-82.[Abstract/Free Full Text]
4. National Center for Health Statistics. Vital Statistics of the
United States, 1991. v. 2. Mortality. Part A, section 1. Washington, D.C.: US
Gov Pr Office; 1996:380-1; DHHS publication no. (PHS) 96-1101.
5. Miller FG, Fins JJ. A proposal to restructure hospital care for
dying patients. N Engl J Med.
1996;334:1740-2.[Free Full Text]
Related
articles in Annals:
Articles
Perceptions by Family Members of the Dying Experience
of Older and Seriously Ill PatientsJoanne Lynn, Joan M. Teno, Russell S. Phillips, Albert W. Wu, Norman
Desbiens, Joan Harrold, Michael T. Claessens, Neil Wenger, Barbara Kreling,
and Alfred F. Connors, Jr.
Annals 1997 126: 97-106. (in ) [Abstract]
[Full
Text]
This article has been cited by other
articles:
 |
|
 |
|
  N. S. Knudsen Doing Everything Ann Intern Med, January 19, 1999; 130(2): 165 – 165. [Full Text] [PDF]
|
|
|
|
|||||
|
|
 |
|
 L. M. Cohen Suicide, Hastening Death, and Psychiatry Archives of Internal Medicine, October 12, 1998; 158(18): 1973 – 1976. [Full Text] [PDF]
|
|
|
|
|||||
|
|
|
|
L. M. Cohen, M. J. Germain, D. M. Poppel, A. L. Woods, P. S. Pekow, and C. M. Kjellstrand Dying Well After Discontinuing the Life-Support Treatment of Dialysis Archives of Internal Medicine, September 11, 2000; 160(16): 2513 – 2518. [Abstract] [Full Text] |
|
|
|
|||||
|
|
 |
|
 L. M. Cohen, M. D. Steinberg, K. C. Hails, S. K. Dobscha, and S. V. Fischel Psychiatric Evaluation of Death-Hastening Requests: Lessons From Dialysis Discontinuation Psychosomatics, June 1, 2000; 41(3): 195 – 203. [Abstract] [Full Text] |
|
|
|
|||||
|
|||||||||||||||||||||||||||||||||||||||||||||||
