Promoting Advance Directives
The administrators' role in encouraging advance directives.
By Hofmann, Paul B; Jennings, Bruce
November 24, 2005
Q. The Terri Schiavo case dramatized the importance of having an advance
directive that documents a persons preferences regarding life-sustaining treatment
options. Federal law now requires healthcare organizations receiving Medicare and/or
Medicaid funds to ask patients at the time of their admission if they have an advance
directive and prohibits them from pressuring an individual into completing one.
And, while still complying with the law, should these organizations be doing more
to increase the proportion of all adults with such documents?
A. Regardless of one's personal views of the Schiavo case, one positive
outcome was the tremendous growth in public awareness about the value of discussing
personal preferences concerning end-of-life treatment options and designating a
surrogate decision maker. An opportunity now exists, but this interest will dwindle
over time unless a more aggressive and assertive campaign is mounted to ensure mat
advance directives are actually executed, placed in the individual's medical record,
and then honoured by health professionals.
Background
Historically many hospitals have been hesitant to be aggressive in promoting
the completion of advance directives, including documents described as durable powers
of attorney for healthcare and living wills. This passive role of hospitals was
not necessarily due to their traditionally conservative views of new social movements
or being risk averse to taking a high-profile position that might generate public
criticism. Instead, they have been very sensitive to the language of the Patient
Self Determination Act, the 1991 federal legislation requiring organizations receiving
federal funds to ask adult patients about the existence of an advance directive.
Healthcare organizations may not discriminate against a person who does not complete
an advance directive; for example, the completion of advance directive forms cannot
be a condition of admission to a facility. In addition, employees are explicitly
prohibited from serving as witnesses if these documents are completed within the
organization.
These constraints were a prerequisite to Congressional passage of the act at
the time because, in part, they reflected the ambivalence and ongoing controversy
in America about forgoing life-sustaining medical technology and allowing natural
death. To accommodate opponents of the legislation, ensuring the "neutral" role
of institutional providers was a vital concession. In the absence of such neutrality,
at least some legislators felt that hospitals, nursing homes, and home health agencies
might be viewed as having a hidden agenda, one designed to force patients and their
families to make hasty and perhaps unwise decisions to limit life-sustaining treatment
options. Others were categorically opposed to any provision that would seem to favor
the right to forgo artificial nutrition and hydration, a form of treatment that
some regard as basic and ethically mandatory.
Greater Role by Healthcare Organizations
Society has paid a price for not recognizing the value of advance directives.
Since 1991, when less than one out of 10 adult Americans had advance directives,
there has been a gradual increase in the perceived benefit of these documents. Even
so, the total percentage of Americans who have signed an advance directive remains
very low. Moreover, some studies have determined the presence of an advance directive
and even a do-not-resuscitate order in a medical record does not guarantee that
patients' preferences will be followed. Patients and families need more positive
incentives to make better use of them, and physicians and other healthcare professionals
need to comply with them consistently.
The lay press and professional literature have made a compelling case for completing
advance directives. On a daily basis throughout the country, patients, families,
employees, and physicians are severely compromised by the lack of clear and convincing
evidence of patient preferences regarding not only end-of-life decisions, but also
other medical decisions when patients temporarily lack decision-making capacity.
A patient's values and preferences, when not documented, are open to wide interpretation
if the patient is unable to participate in decisions affecting his or her treatment.
The potential for disagreement and conflict among family members and staff is much
higher under these circumstances. Among other problems, a lack of consensus around
a decision either to halt or continue treatment may provoke allegations of insensitivity,
generate feelings of guilt, create increased stress, and produce threats of litigation.
Recommended Actions
How can healthcare organizations become more aggressive in encouraging more people
to have advance directives?
One step already taken by many health systems and hospitals is to sponsor community
forums and to collaborate with other organizations that help educate citizens about
advance directives. Waiting to introduce the concept of an advance directive to
a patient who has never been exposed to its purpose until an elective hospitalization
causes unintended anxiety. Thus, there is wide agreement that physicians should
discuss advance directives with patients during routine annual visits. Nonetheless,
because healthcare organizations have greater visibility, more resources, and a
community education responsibility, their leaders should be insisting that this
topic be highlighted in local forums, as well as in newsletters to staff, volunteers,
and residents in their service areas.
Since cultural and language barriers can undoubtedly impede the completion of
advance directives, special efforts must be undertaken to help patients and families
understand both why they exist and to dispel any fears or misconceptions they may
have about them. Failure to do so is a sign of disrespect. Ethnic disparities in
the provision of healthcare services and their outcomes are irrefutable. Failure
to assist with advance planning and advance directives puts patients at risk for
futile, burdensome, expensive, and unwanted treatment or, alternatively, denying
these same individuals treatment when it would be desirable.
Finally, executives should devote at least some of their political leverage to
this subject. Whether urging amendments to the Patient Self-Determination Act or
taking similar actions to influence legislation and regulations at the federal and
state levels, healthcare leaders have an unprecedented opportunity to sustain the
public s awareness of these complex issues and to promote more informed conversations
around end-of-life treatment decision making.
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