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PERSPECTIVE
Whose Death Is It, Anyway?
Timothy Gilligan, MD and Thomas
A. Raffin, MD
15 July 1996 | Volume 125 Issue 2 | Pages
137-141
As medicine has increasingly gained the power to prolong
lifein the face of devastating illness, patients have
increasinglybecome concerned about maintaining some control over how
andwhen death arrives.Competent patients have the legal right
torefuse treatment, but critically ill patients are frequently
unable to participate in decision making. Advance directives
were designed to help patients establish the level of care they
would receive if they were to be rendered incompetent; yet,as
the case discussed in this essay shows, even a valid advance
directive does not guarantee that unwanted medical interventions
will not be forced on us. The problem of physicians ignoring
their patients’ wishes goes beyond issues of communication and
reflects an ongoing ambivalence about power and control in the
physician-patient relationship. Unfortunately, many physicians
find it easier to define success in terms of life and death
than to try to determine what sort of existence is meaningful
to an individual patient.
As medicine has
increasingly gained the power to prolong lifein the face of
devastating illness and injury, physicians, patients,and patients’
loved ones have had to confront the difficultand delicate question
of when to stop trying to save a life.When is a dignified death the
best achievable outcome? Thisproblem is complicated by the fact that
critically ill patientsare frequently unable to communicate their
wishes, forcing theirphysicians and family members to make decisions
for them thatare among the most personal decisions one can ever
make. Toprotect the right of patients to choose the level of life
supportand medical care they would want if they were to become
criticallyor terminally ill, all 50 states have adopted legally
recognizedways for persons to leave written testimony of their
wishes.These documents take the form of advance directives and
includeliving wills and durable powers of attorney for health
care.Unfortunately, as shown in the essay by Hansot in this
issue[1],
a durable power of attorney for health care is no guaranteethat
unwanted medical interventions will not be forced on uswhen we are
at our most helpless.
We believe that the case of Ms. Hansot illuminates several difficult
and important problems in medicine: patient autonomy, communication
between physicians and patients, the need for emotional as well
as physiologic care, and the role of death as a colleague. In
addition, this case highlights the limitations of durable powers
of attorney for health care.
Autonomy
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Patient
autonomy is, in principle, a cornerstone of the legitimacyof Western
medicine. Legally, a person’s right to control hisor her body is
sacrosanct, and forcing medical care on an unwillingpatient is akin
to battery. Although patients do not have theright to demand
interventions that are clearly futile, physiciansdo not have the
right to impose interventions, even if medicallyindicated, contrary
to the patient’s wishes. The legal historyestablishing a competent
patient’s right to refuse medical interventionshas been well
documented elsewhere [2].
Although we appreciatethe concern that Ms. Hansot’s physicians
showed for the preservationof life, the actions of these physicians
violated the patient’sright to decide for herself what quality of
life was acceptable[1].
The hospital was legally required to ascertain whetherMs. Hansot had
completed an advance directive or similar documentbut failed to do
so. Then, the physicians put a tube down thepatient’s throat,
connected her to a mechanical ventilator,and placed her in physical
restraints so that she could notemancipate herself. Despite clear
evidence from the patientand the patient’s legally designated agent
that Ms. Hansot didnot want her life prolonged in this manner, it
took 5 days forthe physicians to relent and bring their
interventions intoaccord with the patient’s desires. That these
physicians actedwith the best of intentions makes Ms. Hansot’s
experience noless painful.
Withholding and withdrawing life support from patients has gained
widespread acceptance in the medical community [3,4]
and thelegal system [2],
but we still see far too many patients tryingdesperately to cut
short the process of dying, only to havetheir best efforts rebuffed
by physicians. This unwanted medicineis an arrogant usurpation of
patients’ rights and serves neitherthe interests of the patient nor
those of medicine as a profession.In ancient Greece, the Hippocratic
Corpus stated that one ofthe primary roles of medicine was to
refrain from treating hopelesslyill persons, lest physicians be
thought of as charlatans [5].
This caveat still applies today.
One of the major ways that patients exercise their autonomyis
through consent. Physicians have an ethical and legal responsibility
to ensure that the patient has consented to the treatment they
are providing. This involves talking to the patient. For hospitalized
patients, physicians should determine, at a minimum, whether
the patients wish to be designated as
do-not-resuscitate/do-not-intubateand whether the patients have
provided an advance directiveor durable power of attorney for health
care. When patientscannot speak (because of intubation, for
example), they maybe able to communicate by nodding and shaking
their heads. Ifa physician believes that meaningful communication is
impossible,a patient’s agent, designated by a durable power of
attorneyfor health care, can speak and decide for the patient. Dr.
Hansot’sperception that her mother’s physicians did not concern
themselveswith the wishes of their patient is disturbing.
In an emergency, patients who are not designated as
do-not-resuscitate/do-not-intubateare presumed to have given consent
for cardiopulmonary resuscitation.However, once a patient’s
condition has stabilized, consentfor continuing treatment is
mandatory. Admittedly, obtainingmeaningful consent from critically
ill, ventilator-dependentpatients presents a difficult challenge and
is often made impossibleby the patient’s mental state. Patients
receiving mechanicalventilation often appear to become depressed
and, if not heavilysedated, may become desperate in their desire to
be extubated.Acutely ill, ventilator-dependent patients in intensive
careunits regularly demand to be extubated despite having an
excellentchance of returning to an independent life. Assessing the
competencyof these patients is critical because, although physicians
haveno right to force unwanted care on patients, allowing a
patientin an altered mental state to make grave medical decisions
canclearly be wrong. In such circumstances, carefully
evaluatingthe patient’s mental status, consulting with the patient’s
familyand loved ones, and waiting to see whether the patient’s
wishesremain stable over time can all help physicians determine
whethera patient’s requests are consistent with the patient’s
knownvalues and goals. Such an assessment is generally easier
tomake when the physician has had a long-term relationship with
the patient.
For Ms. Hansot, the best-case scenario was not a return to her
former state but rather was a hemiparetic life in a nursing
home. The physicians not only lacked Ms. Hansot’s consent but
had evidence, supplied by her legally designated agent, that
she did not want to live the life for which they were saving
her. In such a scenario, we do not understand what could give
physicians the authority to force a patient to undergo undesired
medical interventions.
Communication, Listening, and Caring
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Communication
and listening skills are prerequisites for goodphysician-patient
relationships, and they give the physiciana chance to learn what an
illness means to the patient and thepatient’s family. Good
communication skills make patients feelless lost in the hospital
environment and more cared for bytheir physicians. Effective
communication is particularly importantin the intensive care unit,
which is an alien environment forpatients and their loved ones. It
is filled with monitors andunfamiliar sounds, and the patients are
often obscured by asea of wires and tubing. Visitors may find
themselves overwhelmednot only by the gravity of the patient’s
malady but also bythe foreign stimuli. If the patient’s loved ones
must make life-and-deathdecisions on the patient’s behalf, they will
probably have feelingsof grief, guilt, and confusion. Caring
physicians who take thetime to make emotional, human contact with
patients and theirfamilies can greatly ease the burden that these
persons feelat times of crisis [3,6].
Reading Dr. Hansot’s account of her mother’s last days of life,we
ask ourselves what happened to the humanistic aspect of medicinein
this case. One of the roles of physicians is to give solaceand
support to patients’ families during times of serious illness.That
the pulmonologist accused Dr. Hansot of being an ageistpreoccupied
with abstract principles when she was trying torealize her mother’s
wishes is to us a double violation of theprinciple of
nonmaleficence: The physician not only did harmto the patient by
prolonging her suffering but did harm to thepatient’s daughter by
gratuitously insulting her and causingher anguish. We believe that
much of Dr. Hansot’s and Ms. Hansot’sdistress could have been
avoided if the physicians had madea greater effort to listen to
their patient and her daughter.
As Dr. Hansot implies, their is a difference between takingcare
of a patient and simply maintaining a patient’s vital signs.
Providing emotional support, understanding, and empathy are
important aspects of medical care. Dr. Hansot clearly felt that
she and her mother had been abandoned by the team of physicians,
a feeling that was only exacerbated by the absence of the physicians
at the time of death.
| Beyond Better Communication
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Physicians’
neglect of their patients’ wishes about criticalcare and code status
is disturbingly widespread. The recent,large, multicenter SUPPORT
(Study to Understand Prognoses andPreferences for Outcomes and Risks
of Treatments) trial [7]
found that physicians largely ignored or were unaware of the
desire of terminally ill patients to be designated as
do-not-resuscitate/do-not-intubate.And although poor communication
is a problem in itself, it isalso a symptom of deeper problems in
the culture and climateof hospital-based medicine that must be
addressed. Indeed, thesecond phase of the SUPPORT study found that
having nurses facilitatecommunication between physicians and
patients improved neitherphysicians’ awareness of patients’ wishes
about medical carenor the incidence or timing of written
do-not-resuscitate orders.The deeper problems are related to
physicians’ attitudes towardlife and death and toward medical
interventions and technology.Physicians’ daily work with advanced
medical technology mayengender a familiarity that makes it difficult
for them to understandwhy patients often view ventilators and
feeding tubes with anxietyand aversion. Similarly, medicine’s focus
on pathology and physiology,on vital signs and diagnostic tests, may
obscure the human contextof the illness. Correcting electrolyte
imbalances may seem tobe more urgent than discovering what the
patient wants. Thisis especially true in the critical care setting,
in which thepatient may be intubated and sedated and in which the
physician-patientrelationship may be reduced to a daily 2-minute
physical examination.This elevation of the science of medicine above
the humanityof the patient is a serious problem that probably cannot
beresolved without changes in the organization and culture of
the hospital and the active support of hospital leaders [8].
The problem of poor communication also reflects ongoing ambivalence
and uncertainties about power and control in the physician-patient
relationship. As the physician has gradually taken on a less
paternalistic role in Western medicine, more emphasis has been
placed on patient autonomy. This shift in emphasis has moved
the balance of power in the direction of the patient. Educating
patients about their diseases and available therapeutic options
empowers them to participate more fully in medical decision
making, but it also may threaten the physician’s sense of authority.
Physicians may feel that they, with their greater medical knowledge
and experience, are in a better position to make decisions about
health care. Moreover, when it comes to difficult decisions
about end-of-life care, physicians may believe that they can
relieve the patient’s family of guilt, regret, and confusionby
making tough choices on their own. However, treatment decisionsare
influenced not only by outcome probabilities but also byphysicians’
personal values and priorities [9-11].
Because itis the patient’s life that is at stake, we believe that
thepatient’s voice must be heard and the patient’s values must
be honored.
The case of Ms. Hansot raises an additional question about power:
Was the physicians’ disregard for their patient’s wishes influenced
by the fact that Ms. Hansot and her daughter were women? We
will never know the answer, but it is an important questionto
ask. In the legal world, for example, a study of appellatecourt
decisions in right-to-die cases found that the courtsconsistently
portrayed female patients as less capable of rationaldecision making
than male patients [12].
And the issue is notjust that men devalue women’s voices; it is much
more complicated.Feminist psychologists have observed that women are
often moreinterested in the truths of relationships than in the
dictatesof abstract principles, in the knowledge derived from
humanconnections rather than the knowledge derived from
impersonalreasoning [13,14].
When Dr. Hansot confronted her mother’s physicians,a series of power
dynamics were put into play. Dr. Hansot wasa non-medical person
questioning medical professionals; shewas a woman questioning men;
and she was posing the facts ofher relationship with her mother
against the facts of medicinepresented by the physicians. The
pulmonologist accused Dr. Hansotof preoccupation with abstract
principles, but it seems to usthat just the opposite was true. It
was the pulmonologist himselfwho was preoccupied with the general
medical principle thatlife is good and death is bad. Dr. Hansot was
preoccupied withthe knowledge of her mother’s wishes, which she had
obtainedthrough a close, lifelong relationship. We are arguing not
thatone perspective is superior to the other but that the power
differential in the physician-patient relationship can represent
a deeper problem that impedes communication and interferes with
optimal medical care. If Dr. Hansot’s sex, her nonphysician
status, and her focus on her mother’s wishes rather than onher
mother’s physiology combined to make it difficult for thephysicians
to listen to her, then we can only recommend thatphysicians practice
taking off their white coats. To understandand empathize with those
who are sick or dying, we physiciansmust learn to talk to patients
and families as regular personsand must avoid raising the barrier of
medical authority. Thepractice of medicine should not depend on
overpowering patientsand their families.
| Other Obstacles to Communication
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Physicians
may also fail to communicate with patients or ignoretheir requests
to limit care because of the stress and emotionaldiscomfort
associated with confronting death. Physicians maybe uncomfortable
with their own mortality and hence may avoidspending much time with
dying patients. Moreover, having beentrained to prolong life and
overcome disease, they may feellike failures when they allow a
patient to die if that patient’slife could have been prolonged with
life support. In this regard,withholding or withdrawing
life-sustaining care can be one ofthe most difficult actions that a
physician has to take. Physicianswho feel that they are unable to
take such action probably shouldnot work in critical care.
Discomfort with death may also explain one of the more disturbing
aspects of Ms. Hansot’s case: the feelings of abandonment experienced
by the patient and her daughter. Why did the physician of record
leave it to Dr. Hansot to determine that it was indeed possible
to communicate with the intubated patient? Why were none ofMs.
Hansot’s physicians present at the time of death? Thereis an
unfortunate tendency in hospitals to avoid engaging thehumanity of
critically ill patients near the end of life. Thefocus of
intensive-care-unit rounds can quickly turn from thepatient to the
flow sheet of vital signs and laboratory values.When this happens,
the patient is denied some of the most importantbenefits that
medicine has to offer, and the physicians aredenied one of their
most meaningful roles, that of bedside caregiver.
Finally, physicians may fear the legal ramifications of withholding
or withdrawing life support. These ramifications are complicated
and still evolving, and they vary from state to state; we cannot
explore them in detail in this context. What is clear is that
physicians have no legal right to provide health care contrary
to the wishes of the legally competent patient. In the specific
area of cardiopulmonary resuscitation, case law indicates that
physicians face greater liability when they provide futile
resuscitationthan when they withhold resuscitation [15,16].
Withholding orwithdrawing care from incompetent patients contrary to
the wishesof the family is a more complicated area that is beyond
thescope of this discussion. Dr. Hansot was the only family
memberinvolved in her mother’s medical care, and she wanted life
supportto be withdrawn.
| Death as a Colleague
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The
failure to determine and respect the end-of-life wishesof patients
is an obstacle to improving the quality of medicalcare, an obstacle
that will require doctors to come to termswith death and adjust
their vision of their role in patients’lives. It was not so long ago
that physicians accepted tendingto and comforting the dying as one
of their responsibilities.Even with all of our advanced technology
today, a good deathis sometimes the best we can offer. Sadly, modern
medicine frequentlydoes the opposite, denying patients a peaceful
and dignifiedexit from this world.
Dr. Hansot’s account of her interactions with her mother’s pulmonologist
suggests problems encountered all too often in medicine: Itis
easier to keep patients alive on ventilators than to grapplewith
withdrawing support, and it is easier to define successin terms of
life and death than to try to determine the qualityof life that is
meaningful to an individual patient. To thephysicians attending Ms.
Hansot, sending a hemiparetic patientwith a tracheostoma out of the
hospital to live in a nursinghome counted as success. Ms. Hansot,
however, had indicatedthat she wanted to be allowed to die. The
patient in this caserecognized death as a friend; her physicians
were unable toaccept death as a colleague.
Conclusion
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 Top Conclusion Author & ArticleInfo References |
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Dr. Hansot
presents a troubling picture of medicine. She portraysphysicians who
are so preoccupied with the preservation of lifethat they can no
longer see the broader human context of theirwork, physicians who
have lost sight of one of the privilegesand responsibilities of
medicine: to offer some humanity atmoments of suffering and loss.
Most disturbing, the physiciansfelt that they had the right to force
a sick, elderly womanto undergo the frightening and uncomfortable
experience of mechanicalventilation when she clearly wished to be
allowed to die.
Requests for Reprints: Thomas A. Raffin, MD, Division of Pulmonary
and Critical Care Medicine, Stanford University Medical Center,
MC 5236, 300 Pasteur Drive, Room H3151, Stanford, CA 94305-5236.
Current Author Addresses: Dr. Gilligan: Department of Internal
Medicine, Brigham and Women’s Hospital, 75 Francis Street, Boston,
MA 02115.
Dr. Raffin: Division of Pulmonary and Critical Care Medicine,
Stanford University Medical Center, MC 5236, 300 Pasteur Drive,
Room H3151, Stanford, CA 94305-5236.
| Author and Article Information
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| TopConclusionAuthor & Article InfoReferences |
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From Stanford University
Center for Biomedical Ethics and Stanford University Medical Center, Stanford,
California.
References
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| TopConclusionAuthor & Article Info References |
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1. Hansot E. A letter from a patient’s daughter. Ann Intern Med.
1996;125:149-151.
2. Ruark JE, Raffin TA. Initiating and withdrawing life support.
Principles and practice in adult medicine. N Engl J Med. 1988;318:25-30.[Medline]
3. Consensus report on the ethics of foregoing life-sustaining
treatments in the critically ill. Task Force on Ethics of the Society of
Critical Care Medicine. Crit Care Med. 1990;18:1435-9.
4. Reines HD. Attitudes of critical care medicine professionals
concerning forgoing life-sustaining treatments [Editorial]. Crit Care Med.
1992;20:320-6.
5. Cowley LT, Young E, Raffin TA. Care of the dying: an ethical and
historical perspective. Crit Care Med. 1992; 20:1473-82.[Medline]
6. Gilligan T, Raffin TA. Rapid withdrawal of life support. Chest.
1996;108:1047-8.
7. 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.
8. Lo B. Improving care near the end of life. Why is it so hard? JAMA.
1995; 274:1634-6.
9. Raffin TA. Withdrawing life support. How is the decision made?
[Editorial] JAMA. 1995;273:738-9.
10. Cook DJ, Guyatt GH, Jaeschke R, Reeve J, Spanier A, King D, et al.
Determinants in Canadian health care workers of the decision to withdraw life
support from the critically ill. Canadian Critical Care Trials Group. JAMA.
1995;273:703-8.[Abstract]
11. Christakis NA, Asch DA. Physician characteristics associated with
decisions to withdraw life support. Am J Public Health. 1995;85:367-72.[Abstract]
12. Miles SH, August A. Courts, gender and the right to die. Law Med
Health Care. 1990;18:85-95.[Medline]
13. Gilligan C. In a Different Voice: Psychological Theory and Women’s
Development. Cambridge, MA: Harvard Univ Pr; 1982.
14. Belenky MF, Clinchy BM, Goldberger NR, Tarule JM. Women’s Ways of
Knowing: The Development of Self, Voice, and Mind. New York: Basic Books;
1986:100-52.
15. Marsh FA. Physician authority for unilateral DNR orders. In: Wecht
CH, ed. Legal Medicine 1993. Salem, NH: Butterworth Legal Publishers; 1994:
283-98.
16. Paola FA, Anderson JA. The process of dying. In: American College
of Legal Medicine. Legal Medicine: Legal Dynamics of Medical Encounters. 3d ed.
St. Louis: Mosby; 1995: 404-23.
This article has been cited by other
articles:
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  B. Lo, L. Snyder, and H. C. Sox Care at the End of Life:Guiding Practice Where There Are No Easy Answers Ann Intern Med, May 4, 1999; 130(9): 772 – 774. [Full Text] [PDF]
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 J. D. McCue and L. M. Cohen Freud’s Physician-Assisted Death Archives of Internal Medicine, July 26, 1999; 159(14): 1521 – 1525. [Full Text] [PDF]
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 A. M. Karnik End-of-Life Issues and the Do-Not-Resuscitate Order : Who Gives The Order and What Influences the Decision? Chest, March 1, 2002; 121(3): 683 – 686. [Full Text] [PDF]
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G. W. Ruhnke, S. R. Wilson, T. Akamatsu, T. Kinoue, Y. Takashima, M. K. Goldstein, B. A. Koenig, J. C. Hornberger, and T. A. Raffin Ethical Decision Making and Patient Autonomy : A Comparison of Physicians and Patients in Japan and the United States Chest, October 1, 2000; 118(4): 1172 – 1182. [Abstract] [Full Text] |
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 A. R. Perry, M. M. Rivlin, and A. H. Goldstone Bone Marrow Transplant Patients With Life-Threatening Organ Failure: When Should Treatment Stop? J. Clin. Oncol., January 1, 1999; 17(1): 298 – 298. [Abstract] [Full Text] [PDF]
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