Evaluating and Respecting the Autonomy of Patients with Alzheimer’s at the End of Life

Evaluating and Respecting the Autonomy of Patients with Alzheimer’s at the End of Life

By Sophie Huttner

Table of Contents

• Introduction
• A Factual Background in Alzheimer’s Disease
• Measuring Competence with Respect for Autonomy
• The Current System and Respect For Selfhood
• Stages and the Patient’s “Sense of Self”
• Defining Competence on a Case by Case Basis
• Beneficence and the Desire to Maintain Autonomy
• Beneficence and Informing the Patient
• Loss of Competence Vs. New Realities
• Beneficence and Autonomy from the Family Perspective
• How Each Stakeholder Can Best Prepare for Alzheimer’s
• Conclusions and Connections

Imagine that after noticing that your memory is faltering, you go to the doctor for an evaluation. Soon, you are handed a diagnosis; Alzheimer’s disease. What would your first thoughts be? What would you be most scared of? What would your hopes be for the upcoming medical journey? According to the Alzheimer’s association, nearly 22% of Americans rate Alzheimer’s disease as the disease that they are most afraid of getting. Though each person is different, this fear most likely stems from the threat of losing one’s own sense of self and one’s relationships with friends and family. Because of this, in the treatment and care that would follow, many hope to be treated and respected as an individual. Many want to be allowed to continue living their lives and making their own choices for as long as possible. In the current care environment, however, it is difficult to ensure that these hopes will be fulfilled. Many of the practices that we have, such as the ways in which we define and measure competence, the language we use, the way we administer and think about care, and the way we prepare for the disease, create a care environment that often forgets about the individual. 

These issues are on top of the fact that Alzheimer’s is an incredibly complex disease, making it very difficult to assess and respect the individual patient’s competence. During the process of the disease, patients often lose capacity in some areas, but retain competence in others. This means that many are deemed incompetent to make decisions about their own treatment, even when they might be able to add to the conversation. The process of defining competence in Alzheimer’s patients becomes especially difficult when the patient’s wishes may go against those of their doctor or family, or even their past self. 

In this paper, I will examine how to holistically evaluate the competence of the individual Alzheimer’s patient in order to best respect their autonomy and protect them from manipulation. I will also look at the benefits and drawbacks of defining competency within the structure of “stages”, and how a patient and their family may best prepare for the process of Alzheimer’s disease. I will address the issue of when an Alzheimer’s patient’s wishes go against those of the caregivers or family, and I will look at situations in which perceived medical beneficence may be detrimental to maintaining autonomy. Lastly, I will examine how the patient’s “sense of self” changes as the disease progresses, and to what extent a patient can make decisions for their future self. Overall, I hope to outline the ways in which current practices could be improved in order to better respect the Alzheimer’s patient’s autonomy.

Alzheimer’s disease is a progressive deterioration of the brain that often develops in elderly patients, ages 65 and over. According to the Alzheimer’s Association, the disease “eventually destroys synapses and kills neurons, damaging the brain’s communication network which leads to a loss of thinking and memory capabilities.” It is an ultimately fatal disease, but the time it takes varies greatly; it can last anywhere from 3-20 years. Although there is no known cure for Alzheimer’s, according to the National Institute on Aging there are five drugs that are approved by the FDA to treat the symptoms of the disease. These drugs typically slow progression and work to improve (temporarily) the effects of Alzheimer’s.

Despite the fact that Alzheimer’s is an incredibly common disease, it progresses differently in each patient. Though the progression of Alzheimer’s has been divided into mild, moderate, and advanced stages, the length of these stages and the ways in which they manifest themselves differ greatly from patient to patient, depending in part on the age of the patient and whether they have other health problems. For example, some patients may retain certain aspects of their memory for significantly longer than others, due to a slower progression. The difference in progression from patient to patient results in an incredibly wide range of life expectancies for patients diagnosed with Alzheimer’s. This complexity is part of what makes it so difficult to measure the competence of Alzheimer’s patients. 

In conclusion, Alzheimer’s is an incredibly complex progressive brain disease that impacts every patient differently. At the start of the disease, each patient has different desires, values, and situations. As the disease progresses, often these values change, and may be at odds with those of their caregivers or their previous self. In order to balance beneficence, or the desire to do what is best for the patient, and the patient’s autonomy, it is important to have a way for caregivers to holistically measure patient competence. 

According to West’s Encyclopedia of American Law, legal competence can be defined as the ability to reason and make decisions, to have an understanding of one’s environment and situation, to hold appropriate values and goals, to process and understand information, and to be able to communicate one’s own desires. In a medical situation, this can briefly be understood to mean that the patient understands that they have a choice, the medical situation and prognosis, and the alternatives and consequences to recommended or desired care. When a patient is evaluated and considered to fulfill these requirements and therefore hold competence, their decisions, by law, must be respected. Especially with a condition like Alzheimer’s, these capacities can change over time, so long term medical care and procedures mean that the patient must continually be assessed for competence. It is important to note, however, that the level of competence needed to make a decision varies greatly depending on the perceived importance of that decision. This means that for the most part, a patient cannot be ruled incompetent in general but rather in terms of a specific decision-making area involving their treatment. In other words, a patient that is ruled incompetent to deny treatment can still make the decision of, say, what they will eat for lunch. Still, once a patient is ruled competent, their decisions have to be respected even if they might not be agreed with. This includes situations in which their decision may result in dire consequences and even decisions in which the values used in reasoning go against the values held by the caregiver. 

Declaring someone incompetent severely limits their rights and their ability to participate in medical conversations. Because of this, it is vital that we do not declare patients incompetent too early. It is very important to understand that competence is not a concept in which a patient is either competent or not, but rather an evaluation of competence must be applied to each individual situation; the amount of competence needed to be able to make a decision also depends on the nature of that decision.

 In the case of Alzheimer’s, the deterioration of competence often means that a patient who may very well be competent to make a high stakes decision, like who to leave her money to, at the same time may be completely incompetent in a significantly lower stakes situation, like remembering whether or not they have eaten that day. This is because, according to the Alzheimer’s Association, short term memory loss occurs sooner during the progression of the disease than forgetting one’s own personal history and environment. These kinds of discrepancies make it quite difficult to understand what Alzheimer’s patients are and are not capable of understanding and deciding, especially in the early stages of the disease. 

The current system that is most widely used in determining the competence of Alzheimer’s patients is dividing Alzheimer’s into stages in which each stage has progressively worse symptoms that correspond to the amount of deterioration that has occurred in the brain. There are three basic stages: mild, moderate, and advanced. The symptoms that most commonly manifest during mild Alzheimer’s are: trouble remembering words and names, greater difficulty performing tasks in social or work settings, forgetting things that that one has just seen, heard, or read, losing and misplacing things, and increasing trouble with planning or organizing. During moderate Alzheimer’s, symptoms include: forgetting one’s own personal history, moodiness, being unable to recall simple things like address and telephone number, being confused about where they are or what day it is, being unable to choose proper clothing for event and season, being unable to control the bladder, changing sleep patterns, wandering, and personality and behavioral changes. Finally, advanced Alzheimer’s is characterized by traits like: losing awareness of recent experiences and their surroundings, changes in physical abilities, including the ability to walk, sit communicate, and, eventually, swallow. 

There is no doubt that separating Alzheimer’s disease into stages is useful for doctors in many respects. It allows them to understand the progression of the disease and quickly and efficiently evaluate the amount and type of care a patient or a group of patients may need. Still, many of the effects of stages, though beneficial in the medical framework, have downsides that manifest in the care environment.

As outlined above, Alzheimer’s is a complex disease that impacts every individual differently. This means that the Alzheimer’s patient requires individualized care. Stages, however, may inhibit this, because they force the doctor to broadly categorize and quantify the patient’s illness. This may lead to the depersonalization of treatment, and the lowering of expectations. These effects in many ways undermine the patient’s autonomy and more specifically, their “sense of self”.

The sense of self can be defined, in its most basic sense, as an understanding of the fact that one is an individual with a reality and existence separate from other individuals. Although memory is a part of the self and does deteriorate through Alzheimer’s, it is extremely important to understand that the loss of memory does not equate to the total loss of self. In fact, studies have shown (Fazio, 2008) that Alzheimer’s patients, even in the advanced stage, still retain the ability to understand that they are separate individuals, as shown through the use of personal pronouns. There is no question, however, that the overall perception in the current care environment is that the patient loses their sense of self as the disease progresses. This is reinforced by the stage system in patient care. The language of the stages focuses heavily on the negative, pointing out every weakness and loss that the patient experiences. Although this is certainly useful in medical care, as a framework for the overall care environment, this translates into a situation in which the shortcomings of the patient are focused on, and the strengths of the patient are not supported. An environment that does not value or recognize the patient’s sense of self may actually contribute just as much as the disease to the deterioration of the patient as an individual. This means that a care environment that de-emphasizes the individual is not only emotionally, but also medically, harmful. 

The stages are also harmful because their focus on the loss and decline of the patient often mean that family and caregivers are more likely to leave the patient out of the conversation sooner, undermining the autonomy and competence that they may still have. Because the expectations for the patient are set low, both the patient and the caregiver may focus more on all the bad things that are supposed to happen, and less on the abilities that the patient has retained. Overall, the focus is taken away from the individual patient’s desires, needs, and strengths. To quote Sam Fazio of the American Society on Aging, “Very simply, words affect thoughts and, ultimately, actions. A shift in the words we use can shift our thinking, in turn changing how we approach care.” 

Some examples of language use that might be detrimental to the care environment are: not referring to the patient with his or her name, quizzing the patient about if they remember someone or something (this will embarrass the patient if they can’t remember), talking to patients as though they are small children or babies, only mentioning the patient’s weaknesses and losses, and ignoring the patient. All of these actions undermine the patient as an individual. Good practices that respect the patient’s autonomy and foster a better care environment include: instead of asking the patient what they remember, bringing up memories of their life; talking to them clearly and slowly, but not in a patronizing way; if the patient is able to answer, trying to address them, speaking to the patient, even when they become non-verbal; giving them consistent praise for their accomplishments, and allowing those to be the focus of your conversations. Although this is certainly not an exhaustive list, by implementing these practices, the caregiver can significantly better the care environment and create more meaningful relationships with the patient.  In order to best protect the patient’s autonomy and individuality, the role of stages in patient care should be minimized and there should be a larger emphasis on the patient’s strengths. Stages should be kept as a way for caregivers to understand the need and state of the patient, but the language and sentiment should be changed in order to respect the patient as an individual and better the care environment.

Because levels of competence frequently change in Alzheimer’s patients, the best way to define competence is on a case by case basis. Based on the importance of the decision, the process of defining competence may differ. For some decisions, such as the decision to start or stop treatment, competence should be tested several times over a period of several days to see whether the patient completely understands the decision and the effects of the decision, and can provide adequate reasoning. However, the autonomy of the patient can and should be respected in different ways, even if the patient is unable to do the things listed above. This can occur through keeping patients informed, consulting them even if they are not in complete control, treating patients with respect, supporting their strengths, and helping to maintain their relationships. 

In conclusion, stages are a good starting point, but they shouldn’t be the only thing that is used to determine competence. Patients have to be treated as individuals, and this starts with using patient-centered language in the care environment. By focusing on the patient’s strengths, we provide a way for patients to maintain their cognitive abilities and dignity for as long as possible. Overall, the focus of caregivers should be to help the patient retain as much of their “sense of self” as possible, by helping them maintain relationships and using words, as outlined above, that highlight the patient as an individual.

Autonomy and Beneficence are often at odds with each other in the medical world, especially when it comes to Alzheimer’s patients. Sometimes beneficence may result in the Alzheimer’s patient being left out of the conversation, even if they might be able to contribute or understand certain aspects. This prevents the patient from exercising their own autonomy, and contributes to an environment in which the individual patient is not valued. Still, beneficence is a vital part of the doctor’s responsibilities. This part of the paper will look at how to balance these two values in the treatment of the Alzheimer’s patient so that they complement each other rather than conflict. 

According to The Medical Dictionary, beneficence can be defined as “the ethical principle of doing good”, or more specifically taking actions that serve the best interests of patients. Although it seems to be quite simple in its nature, beneficence can be an especially tricky concept in medical ethics. Often what constitutes “doing good” vs. “doing bad” is subjective and dependent upon the values of the decision maker. When the patient and caregiver have different values, the process becomes difficult. In the realm of Alzheimer’s, patients may be ruled incompetent because their wishes are not a logical conclusion to the caregiver’s values. In reality, however, the patient’s wishes might be competent as measured by a logical conclusion to their own values. This is why it is very important to ensure that the caregiver’s beliefs and values are not blurring or impacting in any way his own views on the patient’s competence.An example of this can be found, interestingly, in an English court case about Jehovah’s Witnesses. After a trial to determine whether or not it had been legal to give a Jehovah’s Witness a blood transfusion while he was unable to give consent, the High Court of England and Wales said this; “’If refusal might have grave consequences for the patient, it is most important that those considering the issue should not confuse the question of mental capacity with the nature of the decision made by the patient, however grave the consequences” (qtd. in Buchanan).  In other words, the measured competence of the patient and the actual content of their decision are not at all the same thing, and should not be treated as such. What this means for Alzheimer’s patients is that if they are determined competent to make a decision, their decision should be respected, and the caregivers should not try to close them out of the conversation.

According to the Alzheimer’s Association, 45% of Alzheimer’s patients are not informed of their own diagnosis. Many times this occurs because by the time the patients are diagnosed, they are unable to understand what that kind of diagnosis means. Still, other times patients are not informed because of a desire to protect them from the fear and anxiety that might come with such a diagnosis. Although often this desire comes from a place of beneficence, it makes it nearly impossible for the patient to exercise any aspect of their autonomy. 95% of patients, according to the Alzheimer’s association, would want to know their diagnosis. The principle of beneficence should be used in order to provide the best care possible, but not as an excuse to keep patients uninformed. By informing patients about their disease, and allowing them to understand what is going on to the best of their cognitive ability, the caregiver gives them the opportunity to better prepare for the disease and state their wishes before hand. It is important, especially at the beginning of the disease, that the doctor or family does not misrepresent the facts of their condition in order to get them to choose a desired course of action, as this would disregard the patient’s autonomy. 

Although there are many times when informing the patient is the best way to respect their autonomy, there may also be times where caring for the patient’s well being is more important than informing them. For example, if the patient is diagnosed after she has already begun to lose significant aspects of her competence, the focus should be on informing the patient about her current state, but the doctor may, out of beneficence, choose to not tell her what will happen in the future to spare her emotional pain and confusion stemming from an inability to understand. Similarly, there is no ethical responsibility to consistently remind the patient of their illness, or to tell a patient who may have forgotten over and over again that their spouse is not alive. In these kinds of situations, not telling the whole truth to the patient does not significantly undermine their autonomy, but it does protect their wellbeing. Therefore, not informing the patient is the most beneficent and ethical choice. 

Another common dilemma that comes up with Alzheimer’s patients is trying to differentiate and separate the difference between changing a decision because of a new lack of competence, or changing a decision simply because of a new day to day reality. Before the disease, the patient may have previously stated or written requests about their desires for end of life treatment. Because they had not yet experienced Alzheimer’s, however, these wishes were based off of their experiences and values that they had held before the disease. It is only natural, however, to change your views and desires when one is suddenly submerged in an entirely new reality. Just as a young person’s values change as they enter new stages of life, so would a patient’s values change. This is not to say that planning and making decisions before the disease is a poor idea (It is, in fact, incredibly important as discussed below.) However, in our efforts to focus on the individual patient, we cannot let previous desires serve as a stand in for the patient’s present desires if they maintain the necessary level of competence to make a decision. It is important to support the patient by giving him or her room to make and change decisions for as long as possible. 

Because Alzheimer’s disease causes such a dramatic change in the patient’s own desires, abilities, and reality, the question of how much of a decision a patient can make for their future self is an important one. Often, for example, people will say that they do not wish to live after they cannot recognize their loved ones. Still, if we were to respect the autonomy of the patient by, say, not reviving them after their heart stopped, we might be at the same time disregarding the current patient’s right to life. By the time the patient gets to the point of not recognizing loved ones, they most likely no longer have the cognitive ability to remember their previous request. This push and pull between respecting the past and present patient is unique to Alzheimer’s, because the present patient may be, for all intents and purposes, a very different person who is unable to consent or change their mind. This is not to call into question the legitimacy of a DNR or other similar requests for treatments at the end of life. Instead, it is to say that if the patient is unable to consent, does not ask for something, and still retains some quality of life, the doctors cannot use the previously stated desires of the patient to inflict harm upon the current patient. Because of the difficulty of assessing quality of life, this could obviously be controversial, and deserves more consideration in the future.

Because of the ambiguity of competence among Alzheimer’s patients, many times family members will feel uncomfortable allowing their loved one to maintain certain aspects of their autonomy, like living by themselves. The concerns of the family come from a place of love and a desire to protect the wellbeing of their relative, so these concerns should be respected and given weight in the patient-care process. The effort to help the Alzheimer’s patient maintain their autonomy should not come at the cost of the patient’s own well being. Still, concerns for beneficence brought up by either the patient or the doctor should be balanced out with concerns for patient autonomy. In this way, we can prevent one value from eclipsing the other, which would be detrimental to all. 

In conclusion, Alzheimer’s patients are living in a new reality, and so some of their desires and values may change. We have to leave room for this emotional process, while protecting them from making harmful decisions out of a lack of competence. Specifically when patients are diagnosed in the most early stages of Alzheimer’s, doctors shouldn’t withhold important medical information in an effort to protect the patient, or because it is easier not to tell the patient. When a patient wishes to make a decision that will impact his or herself at a future time, there should also be consideration of the rights of that future patient. Beneficence and Autonomy, when they are balanced and one does not overshadow the other, can create an optimum care environment. 

The good thing about a progressive disease is that , if caught early enough, it allows for the patient and the patient’s family to better prepare for the medical and emotional process ahead. The family will, in most cases, become one of the primary caregivers to the patient, and so they too play a very important role in the planning process. 

As the disease progresses Alzheimer’s patients become more and more dependent upon their closest loved ones, and as a result the family is often just as impacted by the disease as the patient himself. This means that after the diagnosis, the family must take action to prepare themselves to provide a good care environment and to protect the interests of the patient. This means speaking with the patient about what their wishes are for future medical treatment and also creating a financial plan so as to be able to provide adequate care to the patient. The family, however, should be wary of the temptation to immediately take control of all of the decisions. If the family member is diagnosed early enough to have at least some aspects of her competence intact, he or she should be the one that is guiding the conversation. It is also important to allow the patient room to change her mind and not to pressure the patient into taking one specific course of action. Lastly, the family should respect the emotional process of the patient, as according to the Alzheimer’s Association a diagnosis of Alzheimer’s disease often leads to depression. 

The patient’s ability to prepare for Alzheimer’s is dependent upon their condition at the point of diagnosis. For someone that is diagnosed while still in the mild stage of Alzheimer’s, there is still an opportunity to adequately prepare for the disease in order to ensure that one’s own wishes are respected. This can be done in several ways. The first way a patient should prepare is by informing themselves, to the best of their ability, about Alzheimer’s disease and the effects that it will have. By understanding how you will be impacted, one can better prepare and plan for the future. The patient should also make sure to speak with their loved ones about what they want the most at the end of life and what they do not want. This way, once they do become unable to make their own decisions, their family will know what they would have wanted. These wishes should also be in written form, and if possible, the patient should speak with a lawyer in order to ensure that she is protected by the law and that her desired medical treatment will be followed. Patients should also create an individualized care team, made up of family, friends, and medical caregivers. The care team that they choose should be one that they feel they can trust to protect and respect their autonomy and their wishes if at all possible.

Although the ways in which caregivers should respect the patient’s autonomy and desires were discussed at length in the above sections of the paper, it is important to reiterate the most important points. Doctors are responsible to inform their patient about the disease and their options (in an appropriate manner taking into account their current cognitive ability), so that they are able to make the preparations discussed above. Caregivers should make an effort to respect and maintain the patient’s autonomy for as long as possible, by using language and care processes that focus on the patient’s strengths, and by acting as a support system to aid the patient in maintaining relationships and other things that contribute to their identity as an individual. Overall, the focus should be on providing the best care possible, while respecting the patient’s selfhood and autonomy. 

Although Alzheimer’s is, in the end, always a debilitating disease, proper planning and research can lessen many of the most damaging problems that come with Alzheimer’s and can allow for the patient to have a better, more individualized process. The family, as part of the primary care circle of the patient, is incredibly important during the planning process. They should work to understand what their loved one will experience and to help their loved one to make important decisions. The patient should be open to allowing others to help them plan, but ultimately, the patient, if able, should make the most important decisions about her end of life care. Doctors and caregivers should have open communication with the family and patient, and try to understand what their desires and values are. They should tell the patient everything that they are capable of understanding, because being informed and ready allows a patient to feel less distressed and more prepared. Overall, the focus should be on planning for an environment in which the patient will be able to exercise the autonomy that they still have, and in which the individuality and sense of self of the patient of the patient is supported. 

Every 67 seconds, a new American is diagnosed with Alzheimer’s disease. It is the 6th leading cause of death, and according to the Alzheimer’s Association, the number of people affected by it continues to grow and grow. It is for this reason that we need to work hard to ensure that all of these people will have a care environment available to them that will support not only their medical needs, but also their desire to maintain their sense of self and their identity as an individual. 

The goal, moving forward, should always be to continue to improve and provide better care for patients. In order to do this, we must take the impacts of each aspect of the care environment seriously. Stages are an important part of providing care to Alzheimer’s patients, but they should not be the only thing that we use to determine competence. We should be aware of some of the effects that stages may have, like the depersonalization of treatment, which leads to more rapid deterioration of the patient’s “sense of self”. In the end, patients have to be treated as individuals, not numbers. By introducing more positive language and focusing on the patient’s strengths, we allow patients to maintain their cognitive abilities and dignity for as long as possible. 

As our capability to diagnosis Alzheimer’s gets better and better, and we are able to do so at a much earlier age, the issue of doctors informing their patients about their diagnosis will become even more important. Allowing patients to plan and prepare well is crucial. Even so, no matter how much planning occurs, we also have to recognize that Alzheimer’s patients are living in a new reality, and it may be natural for some of their desires and values to change. We should balance respect for their autonomy with beneficence by leaving room for this emotional process while protecting them from making harmful decisions out of a lack of competence. In determining beneficence, we should make sure that we do not confuse a conflict with our own values for the total incompetence of the patient. When a patient wishes to make a decision that will impact his or herself at a future time, there should also be a consideration of the rights of that future patient. All in all, beneficence and respect for autonomy and personhood can and should coexist in order to provide the patient with the best care possible. 

Because this field is so rich with ideas and applications, there were some things that I am interested in but was not able to address in this paper. In further investigation, I would like to do more field research, possibly through interviewing doctors, nurses, and family members of Alzheimer’s patients to get each one’s unique perspective. I would also like to look more deeply into specific tests for competence, as well as looking into Alzheimer’s competence in a more familial setting, especially in terms of creating or altering a will. I’d like to further research i the legal rights of Alzheimer’s patients, and who is there to advocate for the rights of patients in facilities. Lastly, although I did take into account the fact that we are now capable of diagnosing Alzheimer’s earlier and earlier, I would like to look more in depth into how that change might impact the care environment. As I think more about this issue, I have begun to see connections to other important topics. Specifically, I think that many of the principles outlined here could also be applicable to the mentally ill, and their right to maintain autonomy and selfhood. In the future, I hope to explore that topic further and find applications of my research in evaluating the competence of the mentally ill.