Advance Directives: Autonomy of the Competent

 Tyler Ranellone • University of Pittsburgh

Dementia is a major neurocognitive disorder characterized by deficits in memory, attention, and mental clarity. Because the part of the brain associated with the consolidation and retrieval of memory is diseased, many people who suffer from dementia lose memory of their early life and become incapable of forming new memories. Typically, these sequelae, which may stem from the development of Alzheimer’s, are burdensome enough to interfere with daily functioning. In this essay, I will be focusing on the late stages of dementia in which patients seem to have distinct personalities from their pre-dementia period. This may look like people having simpler interests or behaving differently. Such is the case when dementia patients exhibit increased restlessness and aggression regardless of their temperament prior to the disease. Once a person reaches this stage of disease, it seems unclear whether they are still capable of making important medical decisions for themselves. This is where advance directives become important. 

A person with late stage dementia may use an advance directive to preemptively determine the course of their treatment or who will make decisions for them once they become incompetent. However, what if these instructions contradict the person’s beliefs once they become incompetent? How much should we value the rights to autonomy of those who are no longer competent over when they were competent? A prominent perspective by Ronald Dworkin states that we must adhere to the incompetent patients’ previous values. This view rests on the premise that the capacity for autonomy is essential to one’s personhood. Consequently, once a patient loses this capacity, they are no longer an intact person and do not share the same rights as their earlier selves. The period of time when they were competent takes precedence which includes any values or interests that may be stated in an advance directive. Another important perspective to consider, in direct opposition to Dworkin and formulated by Rebecca Dresser posits that the values of the patient in the late stages of dementia should be given priority over their previous beliefs. This is because the patient has undergone a psychological transformation from one identity to another and with it, their interests may have shifted entirely. In Dresser’s view, following an advance directive once one has had an identity transformation would violate the rights of the patient’s current self. Accordingly, the decisions of a person should reflect their preferences at the current point in time. A final perspective I would like to consider is by Agnieszka Jaworska. Similar to Dresser, she prioritizes the current values of those with dementia but for a different reason: She believes those with dementia still have the capacity for autonomy. Contra to Dworkin, Jaworska predicates one’s autonomy with the ability to value, which she says is not lost in dementia. 

These three perspectives offer the opportunity to evaluate the rights of those that are no longer competent, based on their capacity for autonomy, and consequently the authority that advance directives hold. First, two hypothetical scenarios of patients that have become incompetent will be discussed. This will allow for the defense of the argument morally requiring adherence to advance directives over current interests based on the loss of personhood associated with dementia as well as for respect of autonomy previously held by these patients. Next, a potential rebuttal will be proposed mirroring the arguments of Dresser and Jaworska that attempt to redefine the capacity for autonomy. Finally, a solution to this argument will be delivered that will allow me to expand upon Dworkin’s conception of competence. 

Once a patient’s life has substantially changed due to dementia to the point where current interests differ from those held prior, it may not be clear which set of interests better reflect the values of that person. If the interests that more closely align with the patient’s values can be determined, they should be prioritized when deciding course of care. Further, differentiating between the personhood of someone before and during a life with dementia is crucial to understanding why decisions made when competent should be honored. Consider the following hypothetical scenario:

A fully competent patient who, in anticipation of developing Alzheimer’s disease, espouses a strong conviction, documented in an advance directive, that she does not wish to have her life prolonged in a demented state. She deeply identifies with her intellect, thus she views life with dementia as terribly degrading. But once she develops dementia, her identification with her intellect drops out as a concern, so she loses the corresponding desire not to prolong her life. In the meantime, she is still capable of simple enjoyments – she likes gardening and listening to music – and perhaps she can even carry on meaningful human relationships.

I will call this person Anisa. In this case, Anisa clearly identifies her values at a time before dementia. At this point we may agree that as a competent adult, she has the right to make important decisions that define her life regardless of if they are deemed correct or foolish by others. This is a basic tenet of human rights. After developing dementia, she replaces her love of intellect with new interests. Put simply, Anisa is living a seemingly happy life in her demented state but according to her past preferences, she wants to be allowed to die. Should we take seriously her new interests as someone living with dementia or follow her prior requests? Consider this second scenario:

Mr. O'Connor was a deeply religious man for whom thoughts of taking his own life or of withholding lifesaving measures for whatever reason were completely unacceptable. In his seventies he developed Alzheimer’s disease. He lost his ability to do many of the things he used to enjoy, such as playing the piano, and soon he could no longer take care of himself. With the loss of capacity for complex reasoning, most of his religious beliefs gradually faded away. Then came a terrible emotional blow: the death of his wife. He has now begun saying that he does not want to live.

Mr. O'Connor begins as a competent adult whose religiously grounded values include the prioritization of life. For the sake of my evaluation, we may consider that Mr. O’Connor outlined his deeply held values in an advance directive. The difference between Anisa and Mr. O’Connor is that as Mr. O’Connor progresses into dementia, he begins living an unhappy life, leading him to express new preferences. This begs the same question: should we give precedence to his earlier or current self?

To understand why the former self’s interests should be given authority over the current self, the transformation that occurs in a person when changing from pre-dementia to dementia must be delineated. Both Anisa and Mr. O’Connor begin as competent adults. Competence, as defined by Dworkin, is “the ability to act out of genuine preference or character or conviction or a sense of self”. One must not only possess a clear sense of their values, commitments, course of life, and desires, but must also be able to act upon them. From this capacity, we may derive the right to autonomy. This means that competent adults may shape their lives in any way they please so long as it is in line with their own character. However, as one progresses into the late stages of dementia, they lose this right to autonomy. Once they pass a certain threshold, defined as the inability to be competent as described earlier, dementia patients are no longer able to make important decisions for themselves. In these cases, the authority must be handed over to the former self. A person in this state of incompetence is unable to make choices that reflect a coherent sense of self. This includes having fragmented and contradictory views, being unable to fulfill long- and short-term goals, as well as living an unreasonably inconsistent life such that a dementia patient has no clear purpose for what they aim to achieve. It may even be said that the dementia patient no longer has personhood as they’ve lost their right to autonomy and no longer reflect a clear sense of self. Relating this back to the scenarios, when Anisa becomes incompetent, her values shrink in complexity. She goes from having values of immaterial ideas to the simple joyance of gardening. However, this latter activity does not hold precedence over the prior values as it only reflects her current desires and something that can easily change from one day to the next. It is a merely superficial interest that she has. It is not core to Anisa’s character and something which she uses to guide her life such as the value of intellect. Similarly, when Mr. O’Connor becomes incompetent, he loses his deeply held religious values that were once crucial to forming his beliefs about taking his own life or letting himself die. Mr. O’Connor is now incapable of caring for himself and unable to fulfill the activities that he used to enjoy such as playing piano. Since this goes against his capacity to perform autonomy as described, Mr. O’Connor may no longer be able to make important medical decisions about himself. For both cases, the advance directives put forth prior to dementia must be followed as neither Anisa nor Mr. O’Connor may be considered competent people. It is therefore necessary to look for the last time they were competent and capable of practicing autonomy when looking for guidance in medical decisions for the patients. In doing so we would be protecting the autonomy of the patients. 

The valence of the prior choices in relation to the current state of affairs should not be particularly important when deciding whether to follow an advance directive. Jennifer Hawkins describes this as “the value neutrality constraint”. Due to the vast amount of variation amongst individual values, there must be room for people to make decisions for themselves even if they may be unusual. This is supposing that the person is competent and able to follow a process for making choices. This process entails having values that one must prioritize and then uses to make a choice that is consistent with their internal beliefs. Of course, in an incompetent person, they are generally unaware of their core beliefs and what defines their life as a whole which renders them unable to make this sort of decision. So, in the aforementioned scenarios, we must follow the advance directives that end a seemingly good life and prolong a seemingly bad one for Anisa and Mr. O’Connor, respectively, even if it may seem troubling to do so.

One must also be aware of why autonomy must be respected. To understand this, it may help to look at the importance of autonomy in another setting. In Dr. Atul Gawande’s novel Being Mortal, he gives his account of a geriatric patient named Lou who suffers from Parkinson’s disease and has problems with his memory. His daughter, along with a hired aid, take on the responsibility of caring for Lou as he moves into his daughter’s house. As Lou’s situation deteriorates, it becomes increasingly difficult for them to care for Lou. However, Lou hates the idea of having to live in a nursing home so they settle on an assisted living facility. Dr. Gawande describes this living situation as such: 

They had private apartments with a full bath, kitchen, and a front door that locked … They were allowed to have pets and to choose their own carpeting and furniture. They were given control over temperature settings, food, who came into their home and when … if they wanted not to take certain medications that made them feel groggy.

Lou and the other patients living in this facility were given a relatively large amount of autonomy over their own lives in spite of the physical and mental decline they were dealing with. Being able to control their living situation and even the treatment they received empowered the occupants as they were able to exercise their own competence in making decisions. Studies done by the Oregon government (which funded the assisted living facility), found that residents had maintained their health while also seeing improvements in satisfaction as well as physical and cognitive functioning. Evidently, respecting the autonomy of these residents seemed to be more important than the treatment they received. Despite many residents taking less medication and even engaging in more “risky”  behaviors, such as smoking, people became happier without having to sacrifice their health. These beneficial effects are not seen in people who are forced to adhere to a regimen of medications, no matter how many combinations of different prescriptions are used. We may apply this to the discussion at hand about advance directives. We may assume that those who take the time and effort to develop an advance directive certainly care about their own choices as they play a role in their lives. Therefore, it may be said that patients with advance directives value their autonomy and would prefer that their interests enumerated during a state of competence be given authority, even if they contradict them when in a state of nonautonomous dementia. 

Dissenters of this view may choose to attack the basis for autonomy previously discussed. These objections might fall in line with the views of Dresser and Jaworska who believe the contemporary interests of those with dementia should be given authority over their past selves. According to Dresser’s view, a dementia patient’s prior preferences should not be taken into account as they have undergone an “identity transformation.” For Dresser, the patient’s consciousness and capacity to desire mean that their current feelings should be respected. Jaworaska’s view holds that those with dementia are like any other people in that their values change over time - thus, their current preferences should be prioritized. Rather than place the basis for autonomy on the ability to evaluate one’s convictions based on one’s life as a whole, Jaworska states that autonomy rights should stem from one’s capacity to value. She then goes on to say:

The main difference between mere desiring and valuing is this: One way to deal with one’s non-value-laden desires is to try to eliminate them - to try to bring it about that one does not feel them … A person could contemplate being free of a mere desire with a sense of relief, but one would always view the possibility of not valuing something one currently values as an impoverishment, loss, or mistake.8

Jaworska is distinguishing between desires and values. She argues that when you value something, if that thing were to be taken away from you, you would not be indifferent to it and would instead be upset about its departure. On the other hand, you may be neutral or have weak feelings if a desire were to be taken from you. This can be used to argue that patients with dementia retain the ability to value and are thus capable of autonomy. Consider a dementia patient struggling with several cognitive issues.  When this person attempts to speak coherently or tries to recall a memory,  they understand why they are having difficulty doing so. They express anger and sadness over their inability to function properly. The fact that this person recognizes and is disturbed by what is happening to them reveals their capacity to value that which they do not have. This ability to value thus does not require knowledge of one’s whole life. So, for Jaworkka, as long as the patient is able to express values, –however simplified from the former self – they should be given autonomy over their decisions. This suggests that they know what is best for their current selves.

Jaworska’s account falls short in its overemphasis of the current values of dementia patients. Consider a deeply religious individual with strong convictions against the use of medications. This person espouses these beliefs in an advance directive. Years later, they develop dementia and forget many of their beliefs. A friend tells this person that their life used to be very exciting and that they have many great memories. This individual is upset by this and wants their old life back. According to Jaworska, this individual is showing capacity to value since they regret the loss of memory thereby giving them agency over their own decisions. In this hypothetical situation, the individual chooses to take a theoretical pill that reverses their neurological deterioration to a point in which they are able to recall many of their past beliefs. Remembering their aversion to medication, they are horrified at what they have just done. They become incredibly upset by the violation of religious doctrine they have performed. Consequently, they end up living a very unhappy life as they no longer have a strong commitment to religion and the sense of faith it provides.

In this imaginary situation, a patient was allowed to make a medical decision for themselves based on their supposedly “new” values. The decision based off this value was clearly not reflective of the person’s true character and ended up causing harm. Although I agree with Jaworska’s definition of values, I do not believe it applies in the case of dementia patients. Despite being able to recognize an apparent lack in their lives, dementia patients cannot substantiate any claims on what their core values are such that they are in line with their previous selves. This idea about competence mentioned by Dworkin earlier overrides Jaworska’s argument, as well as Dresser’s in a similar fashion. The supposed identity transformation she discusses is no more than identity loss. The values the late-stage dementia patients possess are merely superficial as they only reflect how they are thinking in the present. They are unable to integrate experiences and convictions from their previous selves in order to make completely informed decisions. Additionally, the values they have are likely to change day-to-day as the patient cannot remember what they valued the previous day in order to stay consistent. This lack of stability adds to the argument against Jaworska’s claim that capacity to value should determine the capacity for autonomy. 

Once a person reaches late-stage dementia, it may not always be clear how important decisions should be made for them. Dworkin argues that values held prior to dementia should be given precedence over the current self as this is more representative of the person’s life as a whole. Those prior beliefs also come from a place of competence and therefore an ability to exercise their autonomy. On the other hand, dementia patients lack these autonomy rights as they may no longer be considered a person due to their inherent inability to make strong convictions about their sense of self. Jaworska disputes this by upholding the autonomy of dementia patients on the basis of their ability to value. However, this fails to realize that these new values result from an identity loss and supposing that adherence to them is best for the patient may cause harm. Therefore, authority should be given to advance directives created during a period of competence, so they accurately reflect one’s core values. Respecting this autonomy in decision making is crucial to those who write their advance directives and violating this would be infringing on their rights.

Bibliography:

Charland, Louis C., and Jennifer Hawkins. “Decision-Making Capacity.” Stanford Encyclopedia 

of Philosophy. Stanford University, August 14, 2020. https://plato.stanford.edu/archives/fall2020/entries/decision-capacity/. 

Jaworska, Agnieszka. “Advance Directives and Substitute Decision-Making.” Stanford 

Encyclopedia of Philosophy. Stanford University, April 6, 2017. https://plato.stanford.edu/entries/advance-directives/#Bib. 

Dworkin, Ronald. “Life Past Reason.” David James Bar, 2017. 

http://www.davidjamesbar.net/wp-content/uploads/2017/01/Dworkin-Life-Past-Reason.pdf. 

Dresser, Rebecca. “Dworkin on Dementia: Elegant Theory, Questionable Policy.” The Hastings 

Center Report 25, no. 6 (1995): 32-38. https://doi.org/10.2307/3527839. 

Ott, Andrea. “Personal Identity and the Moral Authority of Advance Directives.” The 

Pluralist 4, no. 2 (2009): 38–54. http://www.jstor.org/stable/20708976.

Jaworska, Agnieszka. “Respecting the Margins of Agency: Alzheimer’s Patients and the 

Capacity to Value.” Philosophy & Public Affairs 28, no. 2 (1999): 105–38. http://www.jstor.org/stable/2672820.

Gawande, Atul. Being Mortal: Medicine and What Matters in the End. Picador USA, 2017.

Endnotes:

1. Dresser discusses her objections to Dworkin’s theory in “Dworkin on Dementia: Elegant Theory, Questionable Policy (1995)

2. Agnieszka Jaworska, “Advance Directives and Substitute Decision-Making”, Stanford Encyclopedia of Philosophy (Stanford University, April 6, 2017). Under Section 3

3. Agnieszka Jaworska, “Respecting the Margins of Agency: Alzheimer’s Patients and the Capacity to Value”, JSTOR (Philosophy & Public Affairs 28, no. 2, 1999). p. 107

4. Ronald Dworkin, “Life Past Reason”, David James Bar, 2017. P. 361

5. Louis C. Charland and Jennifer Hawkins, “Decision-Making Capacity”, Stanford Encyclopedia of Philosophy(Stanford University, August 14, 2020). Under Section 5.4

6. In this book, the surgeon and author Atul Gawande explores what it is like for patients to age and approach death. He recounts difficult conversations with his patients and tries to figure out what medicine can do to ameliorate their suffering.

7. Atul Gawande, Being Mortal: Medicine and What Matters in the End (Picador USA, 2017). p. 90-91

8. Jaworska, “Respecting the Margins of Agency: Alzheimer’s Patients and the Capacity to Value” p. 141)