This paper presents an in-depth discussion about the issues
involved in honoring a patients advance directive. Ethical
considerations surrounding the issue as they relate to the nursing
profession are addressed. The purpose of the paper is to express
an informed position on the issue of honoring a patients advance
directive and explore reasons why one may not be honored. The topic
was chosen on account of personal observation and awareness in an
acute care setting. The sources used to develop this paper are
published nursing journals, current books related to this issue, and
the Internet. The paper concludes with recommendations to assist the
professional nurse in dealing with issues related to honoring a
patients advance directive.
Will Your Advance Directive be Honored?
Advances in medical technology have done a great deal to
produce miraculous cures and recoveries. In some circumstances
however, these advances have created problems for the elderly. More
aggressive technology approaches are used to extend the life of the
elderly. On the whole the elderly, as well as others, welcome that
development — even if they fear some of its consequences. With these
advances it has become possible to keep people in a vegetative state
for almost unlimited periods of time. Moreover, there are situations
in which neither the patient nor the family has the ability to bring
such unhappy circumstances to an end. For this reason, advance
directives are becoming increasingly prevalent. In a recent study,
King (1996) reported that approximately 90% of the American public
want advance directives. Both the young and the healthy express at
least as much interest in planning as those older than 65 and those in
fair to poor health (p. 77). According to Lynne (1986) nurses play a
significant role because they attend to the patient continuously and
have an especially strong claim to be allowed the opportunity to be
comfortable with the care plan (p. 216).
Advance directives, also known as living wills, are documents
that a person can complete to ensure that health care choices are
respected. An advance directive only comes into play if a person
cannot communicate wishes because the person is permanently
unconscious or mentally incapacitated. A 1991 law called The Patient
Self Determination Act (PSDA) requires hospitals and nursing homes to
tell patients about their right to refuse medical treatment. People
can put anything in their advance directives. Some people list every
medical intervention they do not want, while others want to make clear
their request for heroic measures at any cost. It is a way to spell
out personal wishes. It is crucial that the issue of advance
directives and the issue of euthanasia not be confused. These issues
couldnt be more dissimilar. Euthanasia is largely illegal. Advance
directives are seen as a way to protect ones legal rights for
refusal of treatment. But are advance directives effective in
achieving the aim intended?
There is evidence to indicate that advance directives alone
fall far short of their objective. In a recent study conducted at
Harvard Medical School, Fishback (1996) reported 66% of all physicians
interviewed felt there was nothing wrong with overriding a patients
advance directive, even if the directive unambiguously stated the
conditions for the withdraw and withholding of medical treatment.
Fishback also reported 40% of the physicians questioned chose a level
of care different from that requested in advance by patients who
subsequently became incompetent. The physicians interviewed indicated
that they would only follow a patients advance directive if it was
consistent with their own clinical judgment. The physicians indicated
that they wanted to reserve the right to make clinical judgments about
treatment regardless of a patients request. In another study, Docker
(1995) reported on a study where 900 patients were studied over a
period of ten years. In very few cases did advance directives have
any influence over decisions to withdraw or withhold life prolonging
treatment. The passage of the PSDA half way through the study changed
their effectiveness by barely one percent. A study conducted in the
state of Utah, among 1398 participants, found little evidence that
advance directives affect life sustaining treatments (Jacobson,
Kasworm, Baltin, Francis, Green, 1996). Jaffe and Ehrlich (1997)
report unfortunately, the advance directive movement has not had
great success . . . breakdowns occur with alarming frequency in the
chain of responsibility to observe them (p. 145). When patients were
transferred from ambulatory to acute care settings, only 26 percent of
the patients who had advance directives had them recognized by the
admitting hospital (Jaffe & Ehrlich, p. 143).
These statistics command our attention. They also make us
focus on the tension and disagreement that exists between physicians
and their patients. The population clearly seeks more control over
both their future medical care and also the method, timing, and place
of their death. Patients want . . assurance that there will be no
unreasonable efforts, an affirmation that the dignity to be sought in
death is the appreciation by others of what one has been in life. . .
the acceptance of ones own death is a necessary process of nature . .
.(Nuland, 1993, p. 255). Yet these statistics show that physicians
often do not allow patient control. How disheartening for a patient
to fear that the doctor cannot be trusted in a matter of such
importance. It appears that many doctors have no respect for their
patients wishes. According to Edwards (1994), nurses as patient
advocates have a responsibility to make sure patients wishes are
respected; it is nursings role to raise informed questions and even
objections if a patients treatment violates the patients wishes.
Without strenuous interventions to improve the situation, we will have
expended a vast effort to establish something that basically doesnt
work. Lets evaluate the reasons for the failure to implement a
patients advance directive.
In one study, nurses indicated that family opposition to the
terms of the advance directive was the primary factor that inhibited
health care providers from following the patients living will
(Weiler, Eland, Buckwater, 1996). When families contradict the
patients wishes, physicians take their views under consideration
giving them immense weight. After all, who does the physician have to
answer to? The living, of course. This is why when the family
disagrees with the advance directive, the familys decisions usually
win out. Dealing with death and suffering on a daily basis does not
make it easy for medical professionals to make decisions about
removing life support. Most make an effort to be as dispassionate as
possible about such situations so that families can make informed
decisions. The result is that the profession tends to err on the
conservative side (Edwards).
Another factor for the failure to follow an advance directive
was the treating physicians refusal (Weiler et al). One reason for
the physicians refusal may be reluctance to acknowledge increasing
patient autonomy. After all, the medical decision horizon looks
substantially different today than it did just a few years ago. Before
the 1960s physicians enjoyed a substantial degree of autonomy in
making treatment decisions for, rather than in conjunction with their
patients. Unlike in the 1980s and 1990s, where medical decision
making has become radically transformed from what once was a matter of
professional concern into what has become a matter of individual
choice. Change is in the air, brought on by forces that have put
pressure on members of the medical profession to ease their control on
patient care and treatment decision making. The days of autonomous
physician ruling by fiat without much consideration of patients wishes
are slowly drawing to a close (Hoefler, 1994, p. 191). According to
Hoefler, dramatic changes in the medical profession itself have led
to a breakdown in patient trust. Another reason for their refusal
may be that it is unmistakably apparent that medical paternalism still
exists. A lingering paternalistic attitude on the part of many
physicians is fostering distrust. If the treatment preferences of
patients are to be honored, doctors may face the difficult prospect of
relinquishing, at least in part, this central element of their
professional role (King, 1996, p. 51-52). Still another reason
physicians may refuse is a for-your-own-good reasoning. If physicians
are reluctant to honor patients choices, they may explain their
reluctance as a disagreement about whose judgment is better – theirs
or their patients (King, p. 52). Also, physicians may give their
own ethical principals priority when they conflict with patients
wishes. This is reflected in the following statement by J.M. Hoefler:
When a patients advance directive was too restrictive to
allow a simple or basic procedure that would yield the patient
substantial benefits from the physicians perspective, the
physician gave their own ethical principals priority. The
reverse may also be true: Despite an advance directive
requesting that treatment be provided, physicians may judge
that treatment would be of little benefit to the patient in
the given circumstances and unilaterally decide to withhold or
withdraw treatment. (p. 93)
Fear of litigation is another factor. Added to the moral, ethical and
humane considerations, physicians also must keep the legal risks in
mind. No group is more subject to the risks of litigation than the
medical profession. The medical professional does not want to be
accused of pressuring the family for removal of life support, or to
be second guessed by other medical personnel in a court of law. Even
when advance directives that would seem to protect the physician are
executed, relieving the physician of some liability, physicians may
not comply with their patients wishes (Hoefler, p. 93).
Uncertainty about the meaning and application of a directive
is another reason for not implementing an advance directive once it
has been found and examined. The law on honoring advance directives
from one state to another is unclear. Actually the forms are not
significant legal documents in and of themselves (Purtilo, 1995,
p. 132-133). Even a signed living will could be disqualified if it
failed the courts measure for being not recent enough, not logically
consistent, or not specific enough (Lynn). Interpreting advance
directives can be problematic at times, as when information is
lacking, or when a strict reading of the document does not seem to
make sense. For example, the advance directive may suggest one course
of care, while the physician and/or family believe the patient would
in fact have wanted something else. No advance directive can
anticipate every situation that could possibly arise.
Emergency circumstances can be another barrier to the
implementation of advance directives. The emergency room physician
treating an accident victim is not really in a position to halt things
immediately when a nurse, looking through the patients wallet for
people to contact, finds a living will card. If heroic measures are
applied in an emergency situation, placing the patient on life-support
systems, it is sometimes very difficult to remove them (King, p. 91).
Some believe that discussing advance directives upon admission
to a health care facility is yet another factor. Some would argue that
this is the wrong place and the wrong time. The PSDA made it necessary
for every patient to be asked, upon admission to a health care
institution if they have an advance directive or want to prepare one
and to supply them with the forms. Many institutions are largely
paying lip service to this matter. Many institutions, reluctant to
give the appearance of proselytizing about advance directives, do
little to initiate discussions with new patients who do not have them
(King, p. 110). Many hospital personnel whose job it is to answer
questions and help patients execute advance directives have
insufficient training. Perhaps the PSDA needs to be modified. The
PSDA has, however, increased the publics knowledge. More still needs
to be done. Why, then, should an information giving requirement
concerning advance directives be applied not to physicians but to
health care institutions? Most would agree that the outpatient setting
is the best place and time for such discussion. The physician and
patient could discuss this issue one to one before an admission to a
hospital or long term care facility. If advance directives are to
become an integral part of health care it is essential to implement
interventions that would make a difference. What can nurses do if they
believe a patient is being treated contrary to the spirit or letter of
an advance directive?
According to the American Nurses Association Code of Ethics (ANA,
1985):
Clients should be as fully involved as possible in the
planning and implementation of their own health care. Clients
have the moral right to determine what will be done with their
own person; to be given accurate information, and all the
information necessary for making informed judgments; to be
assisted with weighing the benefits and burdens of options in
their treatment; to accept, refuse, or terminate treatment
without coercion; and to be given necessary emotional support.
Each nurse has an obligation to be knowledgeable about the
moral and legal rights of all clients and to protect and
support those rights.
Nurses can make sure everyone on the health care team knows
the document exists, beginning with the physician. Place it in a
conspicuous position on the patients chart and label the chart, if
necessary.
State laws may place some restrictions on advance directives
or a patient may have one from another state. If, after reading an
advance directive, a nurse is unsure whether it meets the states
requirement, the hospitals risk manager, nursing administrator or
ethics committee should be asked to review the document with the
nurse (Edwards).
Nurses in the outpatient setting can educate patients to ask
their physicians to make their advance directive part of their medical
record, they should keep a copy where it can be found easily and to
communicate their wishes clearly to their family and physician and be
sure they are understood.
Providing psychosocial support for patient and family has
always been an essential part of nursing. Nurses may well be trusted
in large part because they are presumed to act in defense of their
patients lives. Nurses give great importance to the psychosocial
health of their patients. According to Smith, most professional
literature related to the psychosocial care of the dying is written by
nurses. The dichotomy between nursing and medicine is striking in
this regard (Smith, 1985, pg. 284).
Nurses will undoubtedly, sometime during their career, be
faced with similar challenges. However, being focused on the nurses
most significant role as a patient advocate, will assist the nurse
when making incisive decisions.
—
References
American Nurses Association. (1985). American Nurses
Association Code for Nurses with Interpretive Statements, Section 1.1.
Washington, DC:ANA.
Docker, C. (1995). Deciding How We Die. The use Limits of
Advance Directives. [On-line]. Available:
http://www.finalexit.org/wfn27.3.html.
Edwards, Barbara S. (1994). When a living will is ignored.
American Journal of Nursing, 94(7), 64-5.
Fishback, R. (1996). Harvard Medical School Division of
Medical Ethics. Care Near the End of Life. [On-line]. Available:
www.logicnet.com/archives/file2001.php.
Hoefler, J.M. (1994). Deathright: Culture, Medicine, Politics
and the Right to Die. Boulder, CO:Westview Press.
Jacobson, J.A., Kasworm, E., Baltin, M.P., Francis, L.P., &
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Lynne, Joanne. (1986). By No Extraordinary Means. Bloomington,
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Nuland, S.B. (1993). How We Die. New York:Vintage Books.
Purtilo, R. (1995). Ethical Dimensions in the Health
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Smith, Walter, J. (1985). Dying in the Human Life Cycle. New
York:Holt, Rinehart, & Winston.
Weiler, K., Eland, J., & Buckwater, K.C. (1996). Iowa nurses
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Morality of Advanced Directives