Is confronting mortality "by the book" the only option? by Brian Garavaglia, PhD
Caregivers can't necessarily look to paperwork for answers for respecting dying residents' wishes Long-term care increasingly has become a separate and distinct part of the healthcare system. As an area of medical specialization, it has its own unique regulations, terminology, and even views of healthcare that separate it from other areas of healthcare. Given its distinct perspective, end-of-life issues frequently have to be addressed, often more so than in acute care settings. Long-term care settings are more personalized than acute care settings and that, coupled with the population's greater chronicity, leads to long-term care professionals having to deal regularly with end-of-life issues. Nevertheless, many professionals still have a poor understanding of the ethical considerations involved.
The importance of this has become especially apparent after the recent Terri Schiavo case. And it is worth leading off the discussion with a look at some basic ethical concepts.
In examining ethics within the clinical realm, Beauchamp and Childress identify certain core ethical principles that should be evaluated and adhered to: autonomy, beneficence, nonmaleficence, and justice.1 Although all four are key principles, especially as they relate to counseling residents and families regarding end-of-life issues, possibly most important is autonomy. Not only is this ethical principle highly valued because of our culture's emphasis on individualism, but it is the ethical issue that is transgressed upon most frequently. This is often because clinicians are unable to disentangle a case's ethical implications from today's medicolegal environment.
Many professionals fear the specter of litigation that has become all too common. Yet, by embracing this fear, they often attempt to do what is legal while alienating themselves from doing what is ethical. Thus, to avoid potential litigation, they may advise and engage in futile therapy.2,3
What should be prominent in providers' minds are helping to assist and counsel those with issues such as grief and bereavement, reconciling them to their decisions, and helping residents and families move toward the final transitions of life. However, when technical and legal issues take on primary importance, providers tend to view sympathy and caring for the integrity of the whole person as secondary.2
What we are witnessing, as Finucane suggests, is society's legal and medical values approving of an individual's autonomy being superceded by bureaucratic ritualism.2 Kaufman has also addressed this, noting that the American healthcare industry is defining and shaping death and how one should die, 4 but that healthcare workers often experience ethical ambiguity because of the lack of clarity that has become part of this issue. As a result, those who face end-of-life decisions and those who have to help counsel and assist them often have to muddle through bureaucratic rules that override the dignity and autonomy of the dying, while at the same time purporting to adhere to resident rights.
This should not be construed as advocating methods outside of the legal realm, such as assisted suicide or active euthanasia. Rather, the same legal and bureaucratic forces that have promulgated these rules also negate the dignity and autonomy that they state need to be honored.
The Problem With Paperwork
Long-term care practitioners often are not aware of the true parameters of the durable power of attorney. Because it is a legal document bearing the resident's signature, practitioners immediately view the proxy decision maker as the person who should make the decisions on the resident's behalf, even when the resident is still able to make his or her own decisions. At a time when cognizant residents have the ability to advocate for themselves, the professionals who should be protecting this right are instead depriving residents of their autonomy. Here again, although staff feel that they are acting consistent with the document's mandates, their apprehension about failing to act in the appropriate legal manner compromises their ethical conduct.
Doing What Is "Right"
Long-term care professionals often are asked to help counsel families and to help assist with their potential advocacy. Staff members often state what they would do, while at the same time advising proxy decision makers that they have to make decisions based on what they think is right. In this scenario, the professional has advised the proxy implicitly to not consider the resident's wishes, thereby failing to respect the resident's autonomy. Although residents and families often will ask those who are counseling them "what they think" or "what would they do," end-of-life counselors, even though they are bound by the ethical principles of veracity, should advise others without imputing their own values. 5 Telling residents or family members that this is a personal decision and it has to be made by those who know the participants best-the resident or family themselves-is still honoring veracity and avoids imputing one's own values into the resident's situation.
Understanding the proxy's role is critical. As Idziak writes, the preferred standard for proxy decision makers is the "principle of substituted judgment," in which the proxy is advised to advocate based on the "values and desires of the patient." 6
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