Should individuals with dementia be able to overturn binding directives signed before the onset of their illness that deny them the ability to seek treatment for curable diseases? This question defines the final moments of many afflicted with dementia and is an important ethical question that must be answered in order to afford the best care to individuals in such situations. Margo was an average person who was diagnosed with dementia and signed an advance directive stating her desire to receive palliative care and to not receive treatment should she contract a treatable illness. After experiencing dementia, Margo contracts pneumonia and wishes to seek medical treatment. This paper argues why Margo should not receive this treatment as she no longer recognizes any long term values she once held and as such, is no longer able to act out of a continuous sense of self.

Advance directives are documents that allow individuals to specify which medical treatments they would like to receive at the end of their lives. Suppose Margo, an elderly woman experiencing the later stages of dementia, has contracted pneumonia. Before the onset of dementia, Margo signed an advance directive stating that should she contract a life threatening illness such as pneumonia, doctors will not implement life-sustaining treatments. Although Margo may have changed her mind about treatment in her current state, lawyer and philosopher Ronald Dworkin argues that in the case of impaired individuals, the advance directive should be honored over current preferences because the wishes of impaired individuals no longer incorporate the individual’s critical interests and are not derived from a continuous sense of the self. This paper will first discuss different interpretations of autonomy and why autonomy is morally important, then cover why individuals with dementia should no longer have autonomous rights. Finally, this analysis will demonstrate how Dworkin’s autonomy argument holds true for Margo’s case.

Dworkin defines autonomy as an individual’s right to make important decisions regarding his or her life (Dworkin, 1993). Autonomy is a basic principle that allows individuals to make decisions for themselves without external interference in order to exercise control over the course of one’s own life. Autonomous actions can be as simple as deciding to put on a certain pair of shoes or as complex as deciding what field of study to enter and what career path to follow. Thus, Dworkin asserts that it is morally important to respect an individual’s decisions because individuals should be allowed to determine the course of their own lives. Dworkin substantiates this position by considering two different views of autonomy: the evidentiary and the integrity views.

Dworkin describes the evidentiary view as the notion that we should respect the decisions that individuals make about their own lives even if we disagree because individuals tend to know their best interests better than anyone else (Dworkin, 1993). What others may see as detrimental to my interests, I may see as beneficial. For example, coal miners see it fit to work in dangerous coal mines in order to make enough money to put food on the table for their families. Even though others may deem it unwise to risk their health to make money, they do not have a first-hand understanding of the dilemma. Therefore, we must treat individuals as experts on their own lives and respect that they are therefore in the best possible position to understand their interests. According to this evidentiary view, individuals must have a right to autonomy.

However, Dworkin complicates this evidentiary view by proposing two scenarios in which individuals my not act in their own best interest. He first states that individuals often take actions that they know are not in their best interest and yet continue to indulge in these actions (Dworkin, 1993). For example, an individual that is diabetic and obese may continue to eat sugary and fattening foods even if he knows that eating such foods is not in his best interests and could lead to fatal health consequences. This shows that individuals often do not act in their ultimate self-interests, which the evidentiary view does not account for. Second, individuals often go against their best interests in order to promote the interests of others (Dworkin, 1993). A father may run into a burning building in order to save his son or a brother may donate a kidney to his sister in order to save her life. In both of these cases, both the brother and the father act against their own self-interest in order to promote the interests of another. Thus, the evidentiary view is not a compelling argument for the right to autonomy. The integrity view offers a better explanation.

Dworkin describes the integrity view as the notion that autonomy acknowledges an individual’s capacity to express one’s character through their actions. This character is expressed through critical interests, according to which an individual reflects on his desires and pursues long-term goals, and experiential interests that allow an individual to enjoy a pleasurable quality of life (Dworkin, 1993). The integrity view states that we as human beings have certain values that we uphold or aspire to and that every action we take is a reflection of these values. This is a stronger argument for why individuals act autonomously, as it holds true even when individuals act against their immediate self-interests. They do so because of their dedication to a set of values and beliefs, and every action they take in this regard further expresses those values. Therefore, the father who runs into a burning building in order to save his son does so because he values his family as well as his altruistic duty as a father. Similarly, in the case of the diabetic man choosing to continue to eat sugary and fattening foods, he does so because the utility he gains from eating the food outweighs the negative health consequences that he will likely face.

Autonomy is a basic principle that allows individuals to make decisions for themselves without external interference in order to exercise control over the course of one’s own life. Autonomous actions can be as simple as deciding to put on a certain pair of shoes or as complex as deciding what field of study to enter and what career path to follow.

In order to thoroughly understand why this view of autonomy is more comprehensive, it is important to understand critical and experiential interests. Critical interests allow us to feel that our lives are worth living. They allow us to reflect on the type of person we want to be and prioritize long-term aims that must be satisfied to feel fulfilled. These interests are not concerned with day-to-day experiences, but rather add an overarching value to life. Critical interests are crucial to the notion of autonomy because they allow an individual to live his life according to his own values, even if those decisions seem unwise to others or appear to go against his best interests. For example, while an artist that is living in utter poverty may make more money and experience a greater quality of life if she chose a different profession, she may feel that the value she derives from painting fulfills her critical interests and outweighs the costs associated with being impoverished. When considering her critical interests, she may feel that her life would have been worse off had she not become a painter. Similarly, while a medical student faces years of grueling study before becoming a doctor, he does so because he derives a certain value from being a doctor that makes his life meaningful. Our critical interests allow us to determine whether our lives and the sum of our actions were meaningful on the whole.

Experiential interests, on the other hand, allow us to appreciate the immediate quality of our lives. These are interests that allow us to enjoy pleasurable experiences and to avoid painful ones. By fulfilling our experiential interests we derive value from enjoying a high quality of life. For example, one may derive value from simple acts such as watching a movie with friends or sleeping after a long day of work. These are experiences that allow me to fulfill my immediate desires. If we consider the integrity view as a whole, taking both critical and experiential interests into account, we are able to see what it means to act autonomously. Further, this also allows us to see why autonomous actions are morally important. If every individual is endowed with a unique and distinct set of values through which they derive their sense of self from and if both our critical and experiential interests guide our lives and the actions we take, it then follows that every autonomous action that we take is derived from an intrinsic sense of self which is unique to each individual. Therefore, every individual who possesses both these critical and experiential interests is the best possible actor to decide which action is more in line with his values. Thus, because each individual possesses a unique and intrinsic set of values that they ascribe to, it is morally important that autonomous actions ought be a right endowed to each individual.

With this understanding, it is also then possible to foresee scenarios in which autonomy comes into conflict with personal welfare. Dworkin gives primacy to liberty in the face of life and death situations for this reason, using the example of the Jehovah’s Witness who should be allowed to refuse a life saving blood transfusion on the basis of his religious convictions (Dworkin, 1993). While the Jehovah’s witness is clearly going against his own personal welfare when refusing the blood transfusion, he should be able to act autonomously to satisfy his critical interests in accordance with his religious beliefs. The Jehovah’s Witness places great value on his religious convictions and satisfies his critical interests by adhering to them, therefore deriving greater value from religious fidelity than he would from receiving the blood transfusion.

Critical to the discussion regarding advance directives and dementia, Dworkin argues that this philosophy only applies when individuals are of sound mind. He argues that patients with dementia are no longer capable of autonomous decision making, as they do not have a clear understanding of past and future and are unable to reflect on their past actions or maintain long-term aims. An individual with dementia can no longer look back on her life and evaluate whether or not her life had meaning. When she is unable to do so, she is consequentially unable to fulfill any of her prior critical interests, so her actions no longer reflect the integrity of her life and no longer express her true character (Dworkin, 1993). In short, they cannot recognize their critical interests and as such are no longer able to act out of a continuous sense of self, making them incapable of acting autonomously. Competence in this sense means being able to reflect on past actions and beliefs and translate those experiences into future decisions that advance personal values. Incompetence refers to an individual’s inability to uphold a certain set of values and have long terms aims and aspirations. This also means that while critical interests are generally more important than experiential interests, an individual with dementia who understands immediate sensations but does not remember long-term values will prioritize experiential interests over critical interests. However, we have established that critical interests give life broader meaning and are therefore more important, and should not be sacrificed with a decline in mental health. An individual has a right to designate their critical interests—to be prioritized in any circumstance—and have those upheld even when they cannot remember them.

An advance directive serves as an individual’s official statement of critical values and preferences that they would like upheld even when they are unable to articulate their wishes. While this usually comes into play should a patient enter a coma, Dworkin goes so far as to state that dementia constitutes such a state of incapacitation and that the advance directive should override articulated desires in such a state. This position is founded in the established understanding that an individual rendered incompetent by dementia is no longer able to have a continuous sense of self. They are no longer able to adopt a value based upon which they can live out their life, let alone foresee whether or not their actions are in line with this value. Therefore they do not have the right to what Dworkin calls a “fresh exercise of autonomy,” or the right to override the autonomy designated by their past self in a sound state of mind (Dworkin, 1993).

To reintroduce Margo in the context of Dworkin’s argument, it is clear that should she contract pneumonia at the end of her life and request life-saving antibiotic treatment that contradicts her advance directive, her advance directive must be honored. She should receive palliative care that will ease her pain and will allow her to die peacefully in accordance with her prior preferences. We ought give Margo this palliative care for while she does not have the ability to make reasonable decisions in line with her character, the fact that she still experiences pain and pleasure on a daily basis means that she die a peaceful death, devoid of any pain and suffering. Margo is no longer able to discern the set of values and beliefs that she molded her life around when she was competent and as such, she is no longer capable of making choices that reflect the integrity of her character. If Margo, while competent, states that she does not want life saving treatment in the event that she contracts a life threatening illness, this should be honored because it reflects the set of beliefs by which she wanted to live her life as designated in her competent state. For example, she may have preferred not to become burden on her family or prolong the loss of memory and identity, which she may have felt would leave her to die a former shell of herself. This fact about Margo also delineates a key distinction between patients with dementia and patients with other lifelong mental impairments. Margo’s case is different from other individuals with mental impairments because Margo, at one point, decided to live her life according to certain values and these values dictated the choices that she made. A person with lifelong mental impairments usually does not have this change in values and as such is given autonomy for he is always making decisions in accordance with these values. Thus, Margo is no longer able to make value judgments in accordance with her critical values and long-term sense of self, and as such should not be allowed to overturn the decisions articulated in her advance directive.

This argument will incite two potential objections: one could argue that before the onset of her dementia, Margo was incapable of making an informed decision for her future state, or that her needs and identity have changed with the change in her mental state, and she should therefore be treated as an autonomous individual with a mental impairment whose experiential interests now outweigh her former critical interests.

A critic could claim that Margo was incapable of making decisions concerning her future needs and wellbeing before having ever experienced dementia. Therefore, even while considering her critical interests, she could not have anticipated her immediate desires in her impaired state. For example, many women who experience unplanned pregnancies say that they do not want to keep their babies and wish to put them up for adoption. Once the child is born, however, many of these women change their minds and decide to keep their babies. Humans are not always able to adequately foresee the outcomes of events that significantly affect their lifestyles and day-to-day decision-making processes.  Therefore, some argue that we should allow the present Margo to opt into treatments that contradict her advance directive. The difference between these two cases is that the pregnant woman retains her competence before and after pregnancy. That is, she preserves the ability to compare her every action to a set of beliefs that she wishes to live by, so she maintains the right to autonomous decision-making. Margo’s dementia, on the other hand, renders her incapable of fulfilling her critical interests and acting in accordance with her personal value set. Therefore, though she had not yet experienced dementia when she wrote her advanced directive, she was still capable of anticipating future declines in health and choosing treatment plans in accordance with her critical interests.

One could also object that Margo is a different person now, and as such should be treated as an individual who lacks critical interests as a result of her mental disorder. If Margo is perfectly happy experiencing the simple pleasures of life and fulfilling her experiential interests, one could argue that she has a right to request treatments that would allow her to continue living this way. One may respond to this by stating that because Margo lived the majority of her life as a sound-minded individual with aspirational values, decline in her mental faculties later in life does not constitute a new identity that is entitled to negate her expressed wishes. According to the integrity view, which states that individuals have the right to determine the course of their lives as a whole, we must respect her autonomy as a competent individual by allowing her to choose the way she would like to die.

According to the integrity view, which states that individuals have the right to determine the course of their lives as a whole, we must respect her autonomy as a competent individual by allowing her to choose the way she would like to die.

One could further defend the decision to uphold Margo’s advanced directive on the grounds of medical beneficence. The medical community ought strive to protect the interests of any person who is not able to do so themselves. In this sense, the medical community has a duty to ensure that Margo’s decision-making calculus in accordance with the belief system that she wished to live by is not overturned while she does not have any critical interests. A critic to this claim could argue that a doctor has a duty to promote Margo’s best interests in her current state. If this means reversing her advanced directive, the doctor should do so under the principle of beneficence. One may respond to this argument by weighing Margo’s current state against that of her former, pre-dementia state. We should not simply respect one decision over the other simply because one decision is more recent. Given that Margo with dementia only acts according to what maximizes her current pleasures and minimizes her current pains, a doctor ought protect the integrity of the decisions that she made when she retained her critical interests.

Ultimately in Margo’s case, her advance directive, created in accordance with her sound-minded values, must be respected as the true determinant of how Margo at her most competent state, wanted her life and body to be treated should she become incapable of expressing those wishes. Dementia constitutes a significant change in mental state that renders Margo unable to make autonomous decisions in line with her critical interests; therefore her advance directive should be honored without question.

 

References

Dworkin, Ronald. Life’s Dominion: An Argument about Abortion and Euthanasia. London: Harper Collins, 1993. Pages 218-241.