Chapter 10 : Care of the Dying
Quality of Life and Non-treatment Decisions for Incompetent Patients: A critique of the Orthodox Approach
Authors: Rebecca S. Dresser & John A. Robertson
Printed in: Law, Medicine & Health Care 17, no. 3 (Fall 1989): 234-244. (Notes omitted)
Summary by Stephen S. Tiffany(2002)In this article, Rebecca Dresser and John Robertson are arguing that we need a better way than the orthodox approach for determining when an incompetent health care recipient may be allowed to die … or, perhaps a better way to express it, when treatment may be withheld or abated. The authors subscribe to the quality-of-life arguments as they coincide with the best-interests concerns. In taking their position, Dresser and Robertson claim that the advance directives, whether the "living will," the DNR, or the medical proxy, cannot satisfactorily recognize the actual status of the recipient at the moment when they come into play. If this is the case, then the authors doubt the efficacy of these instruments because all of them need to have been signed while the person was competent to express her/his preferences …preferences that are no longer valid, according to Dresser and Robertson, once the person is deemed incompetent. "Determining what the fictional competent person in the incompetent patient’s situation would choose entails further moves. An incompetent prior oral or written directive concerning treatment when incompetent is given great weight in determining that hypothetical choice. If no directive exists, courts … adopt the substituted judgment doctrine …" (Text. P. 233) The various cases that enunciate this approach to making decisions for incompetent patients, i.e. In re Quinlan, have created a climate in which these prior directives have become the standard.
There are several errors with the orthodox approach, in spite of its widespread acceptance in the United States. The first of these is: Incompetent Persons Must Be Treated as Autonomous Choice-Makers. Equal respect for competent and incompetent persons does not require that the latter be treated as if they were autonomous. "Choice is irrelevant if one lacks the capacity to choose."(Text. P.234) For an incompetent recipient of care it is important to determine what interests that person still has, if any, in receiving life-sustaining treatment. The authors feel that the best interests of the incompetent person are not well served if those interests are determined in the same way as if the person were competent.
The second enunciated error is: Expressed or Inferred Prior Choices Are an Accurate Indicator of Incompetent Persons’ Current Interests. It is not possible to know what the treatment choice of the incompetent patient would be and it is inherently wrong to assume that it would be the same as when s/he was competent. In order to know how to proceed, we must be able to identify present and future choices of the incompetent patient, not rely on past preferences. The desires that an incompetent person has regarding what makes life worth living may be very different from those of that same person when competent. The fact of becoming incompetent may radically alter the interests in how life is worth living. Thus, the directives issued when a person is competent may be too broad and too vast when s/he becomes incompetent.
The third error enumerated by Dresser and Robertson is: Personal Autonomy Includes the Right to Control the Future by Advance Directives. Unlike contracts, wills, etc., the advance directives issued by the autonomous adult are not explicit for every future medical situation. This is even further complicated by a proxy who is under no legal obligation to rely on any advance directive in making treatment choices for the incompetent patient. Advance treatment directives do not have the power of a promise on which another party relies. In fact, other parties may have their own best interests in mind when enforcing an advance treatment directive. There is really no obligation to honor an advance treatment directive, as there is no contract, no binding agreement, between the incompetent patient and any other party. Unlike a "property will," the incompetent patient is still alive at the time of determining whether it is in her/his best interests to abate life-sustaining treatment in accordance with a "living will." Though autonomous adults want the assurance that they can control their own medical treatment future, this might effectively cost the life of a person who, due to passage of time and changing interests, still has a significant interest in maintaining her/his life. The authors believe that "A policy favoring advance directives is not justified unless it recognizes and chooses to run this risk…"(Text. p. 235) How can the incompetent patient’s current interests be determined? The orthodox approach assumes that the past interests of competent persons are the same as the current interests of incompetent patients. In so doing, it allows family stress and monetary considerations to override the best interests in maintaining quality-of-life for the incompetent patient. Instead, there needs to be a way to evaluate whether continuing treatment actually serves the current interests of the incompetent patient. This patient-centered approach needs the backing of society if it is to become standard. Treatment must succeed in serving the interests of incompetent persons by supplying them with an acceptable quality-of-life. "Society’s commitment to a patient-centered position can be reaffirmed or modified on the merits, not in the guise of determining what the incompetent patient would have chosen if competent." (Text. P. 236) The authors contend that it must be possible to assess the value of continued life for the person who has become incompetent, not to accept the feelings of a competent person in an incompetent state. The question is whether the diminished experiences and perspectives are of value to and in the best interests of an incompetent person.
There are several advantages to this approach. One, because it is client-centered, it focuses on the person as s/he is now … not her/his previously competent state. Two, it permits discontinuation of treatment when the incompetent patient has minimal "relational capacity" and no real claim to continued life. Three, family and societal burdens are paramount when they no longer conflict with the current interests of the incompetent person. Four, this focus clarifies and delineates the differences between patient-centered and other directed approaches to continuing or abating life-sustaining treatments, thus forcing a more direct confrontation of all mitigating factors. Fifth, the family or proxy will still determine the course to follow but will be subject to a professional review that "explicitly applies a current-interests test to [their] choice."(Text. P.236)
There is a major difficulty in that it may prove arbitrary and nest-to-impossible to obtain reliable information about an incompetent person’s subjective experiences. This may, often, be overcome through evidence gained from observers and health care workers currently involved with the person. This leads to determining what constitutes "a life worth living" for an incompetent. Once again the authors contend, "it is possible to make considerable progress before facing the toughest questions about quality-of-life and trade-offs with other interests."(Text. P. 237) Some of the incompetent patients for whom no further life-sustaining treatments are indicated include those in chronic, unremitting pain, those who are in a persistent vegetative state, and those who are "barely conscious." Without the ability to initiate and sustain the many activities that define our humanness, the incompetent are deemed to require no further life-sustaining treatments.
On the other end of the continuum are the "pleasantly senile" and others who are enjoying a somewhat diminished life. They are entitled to the same rights and considerations as fully competent adults. Advance directives and medical proxies must be reevaluated based on the current interests of the individuals.
There will be some cases that are not clear-cut. These may well engender discussion and conflict even seemingly endless debate, but certainly no more difficulties than trying to understand what the competent person, if incompetent, would choose. The current-interests standard provides an openness that, for Dresser and Robertson, "constitutes a great advantage …"(Text. P. 238) In conclusion, the authors argue: "Open assessment of quality of life will give incompetent patients their due, while at the same time acknowledging a proper role for family and cost concerns." (Text. P. 238) The questions that must be resolved are: "What quality of diminished life should be protected?" … And "At what cost?"
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