Health Care Directives
Historical Overview
Since the early 1970s, Americans have been
encouraged to complete advance directives to ensure that physicians and family
members will know their end-of-life treatment wishes in the event that they
become unable to participate in decision making.
Many Americans fear becoming
trapped in a dehumanizing medical system that ignores their personal goals and
wishes, robs them of privacy and dignity, and prolongs their dying with painful
and ineffective technological interventions.
Health care providers, educators,
and those involved in health care policy maintainer that, in order to avoid
unwanted end-of-life situations , decisional capable adults can extend
their current autonomy into the future by participating in advance care
planning and completing advance directives (ADs).
Advance Health Care Directives and Their Forms
documents take. The instructive direct the( i e , living will) aims to direct
future medical interventions by stipulating in writing a preferred course of
action such as the refusal of particular therapies, or less commonly ,
requesting that all life-extending measures be used, in the event that the
patient loses the ability to directly participate in health care decisions.
Although each state stipulates and defines the conditions under which ADs
become operational, honoring the instructions in living wills is invariably
contingent upon a clinician’s determination that the patient has lost
decisional capacity and that he or she has a “terminal” or
“incurable” condition . Both of these qualifying conditions require a
medical judgment to be made.
Decision Making And Judgemental Aspects
attorney for health care) designates a person to function as a surrogate
decision maker and make all medical decisions in the event that the patient
loses decision making capacity .
Treatment decisions made by the surrogate
are expected to be consistent with those that would have been made by the now
incompetent patient, a standard of decision making known as “substituted
judgment.” Some state statutes combine written and appointment directions
in one document.
A decision not to attempt cardiopulmonary resuscitation is
another form of ADs and is usually made by a surrogate following a physician
recommendation, when the physician determines that a resuscitation attempt
would e i there be medically futile or extraordinarily burdensome in light of the
patient’s current condition.
Right To Die
Since 1976, when the first so-called
“right- to die” case involving Karen Ann Quinlan was decided, members
of the public, religious groups, and health care professionals have. engaged in
a vigorous debate about the acceptability of stopping life-prolonging treatment and allowing death to occur .
The individual at the center of these early
“right-to – die” cases were almost always young adults who had lost
decisional capacity, often as a result of a traumatic injury, and left no
written ten documentation or clear verbal instructions about their end of life
treatment wishes.
Their family members had to petition the courts in order to
stop unwanted life-prolonging treatments. In 1990, the United States Supreme
Court upheld Missouri’s evidentiary standard that required “clear and
convincing evidence” of the then vegetative Nancy Cruzan ‘s wishes before
permitting her family to discontinue the tube feedings that were sustaining
her life.
Self Determination In Philosophical View
expected benefits of advance directives and encourage their use, Congress
passed the Patient Self-Determination Act of 1990. This Federal legislation
requires all health care institutions to inform newly admitted patients about
ADs and offer them assistance in completing a directive.
Individual state
legislatures have provided additional support for ADs; all 50 states have
completed some form of statutory recognition of these documents.
Despite a
great deal of effort and subsequent publicity that included syndicated
newspaper columns by Ann Landers and “Dear Abby” among other attempts
to educate and motivate the public about these documents, completion rates for
advance directives continue to range from 4% to 25% (Perkins, 2000).
Even when
patients have completed an AD, clinicians observe that they are often unavailable, or not applicable in many situations involving critically ill adults (Tonelli,
1996). Researchers are now examining how ADs actually function in various
clinical settings, and are exploring whether the presence of an AD ensures
compliance with patients’ end-of-life treatment wishes.
Others are questioning
the very relevance of ADs to advance care planning (Perkins, 2000; Drought
& Koenig, 2002). Nonetheless, surveys of patients and health care
professionals have consistently demonstrated widespread support for the idea of
ADs as an effective means to ensure that end-of-life interventions conform with
patients’ wishes.
Studies have found that while ADs are reassuring to patients
who complete them, they do not ensure that a patient’s end-of-life wishes will
be followed. In a study by Tierney et al. (2001), investigators found that
discussions about ADs improved the care satisfaction of elderly patients.
With
chronic illnesses, but a second study found that having an ‘instructional AD
did not increase the likelihood that family decision makers would make
treatment choices that accurately reflected the patient’s end-of-life wishes as
stipulated in the AD (Ditto et al., 2001).
Ditto and colleagues also found that
family members’ predictions of what the patient would want were correct less
than 70% of the time, and families were two to three times as likely to make
errors of over-treatment as under-treatment-eg, approving life-sustaining treatments
the patient would not have wanted under the circumstances.
Health Care Providers Contributions
In a study by geriatric nurse researchers that
aimed to explore advance care planning (ACP) and end-of-life care for nursing
home residents who were hospitalized during the last 6 weeks of life, Happening and
colleagues (2002) found that the primary focus of ACP in the nursing home was
on cardiopulmonary resuscitation preferences.
By so limiting ACP discussions,
end-of-life treatment choices were inappropriately constrained and oversimplified,
with the result that the benefits of palliative or hospice end-of-life
interventions were underutilized. In another study, researchers aimed to
evaluate the effect of an ACP intervention on the completion of ADs and patient
satisfaction among persons with HIV/AIDS.
Although the rate of completion for
ADs went from 16.4% to 40.7% following three face to face counseling sessions
about ADs, it was subsequently noted that 23% of the completed ADs were deemed
legally invalid (Ho, Thiel, Rubin , & Singer, 2000).
Research Outcomes & Comparison
Another group of researchers compared. the
accuracy of substituted judgments made by primary care physicians,
hospital-based physicians, and family surrogates on behalf of elderly
outpatients, and explored the effectiveness of ADs in improving the accuracy
of those judgments.
Coppola, Ditto, Danks , and Smucker (2001) found that
familiarity with the patient’s AD did not improve the accuracy of substituted
judgments for primary care physicians or family surrogates; it did increase the
accuracy of the judgments made by hospital based physicians.
Drought and Koenig (2002), nurse ethicists ,
conducted an ethnographic, longitudinal study of terminally ill patients with
solid tumor cancer or AIDS that explored the difficult – cult medical decisions
each patient faced in the course of their illness and treatment, these
researchers concluded that shared decision making is illusory, terminal
patients frequently resist advance care planning, and hold values other than
autonomy as important .
They cited substantial support for their observations
that no studies to date have shown that ADs significantly facilitated
end-of-life decision making, truly direct care, or saved resources at the end
of life.
Many commentators noted the following
difficulties associated with use of instructive directives: incomplete
information, the in ability to anticipate future medical conditions , and
uncertainty regarding the meaning and intent of written instructions.
These
problems of interpretation require clinicians to seek information from others
in the attempt to determine what the patient “really meant” (Tonelli,
1996).
Tonelli and others concluded that, because of the limitations associated
with the use of instructive directives, proxy directives are the preferred form
of AD (Dexter, Wolinsky , Gramelspachar , Eckert , & Tierney, 2003;
Perkins, 2000; Tonelli).
Clearly, there is a need for further research to
explore whether ADs facilitate good end- of-life care, and nurses are ideally
situated to direct and participate in furthering understanding of these
documents.