Those who work in dementia care settings face difficult ethical decisions each day. Caregivers must balance the needs of multiple residents or clients while considering patient confidentiality, the potential for abuse, and the benefits and risks of medications and procedures. If patients are no longer able to express their own will, designated decision-makers must step in and make difficult decisions. Decision-makers must put aside their own needs and desires and carry out what they believe the person with dementia would do if able.
Ethical Approaches to Care
Healthcare providers are routinely called upon to make ethical decisions and must incorporate ethical principles into daily care. This is particularly true in the complex and ethically difficult area of dementia care. A key principle is to understand and remember that people with dementia remain the same equally valued people throughout the course of their illness, regardless of the extent of the changes in their mental abilities (Nuffield Council on Bioethics, 2009).
In biomedical ethics, several basic ethical principles are commonly accepted. These are (1) autonomy and well-being, (2) beneficence, (3) justice. Veracity or truthfulness must also be considered.
Autonomy and Well-Being
Autonomy is the right of individuals to make decisions about their own healthcare and their own life. Patients must be told the truth about their condition and informed about the risks and benefits of treatment. Patients are permitted to refuse treatment even if the best and most reliable information indicates that treatment would be beneficial, unless this decision has a negative impact on the well-being of another individual. This sort of conflict can create an ethical dilemma.
For someone with dementia, autonomy means fostering important relationships, maintaining a sense of self, and having a way to express values. Autonomy is not simply the ability to make rational decisions. A person’s well-being includes both their moment-to-moment experiences of contentment or pleasure, and more objective factors such as their level of cognitive functioning (Nuffield Council on Bioethics, 2009).
Beneficence is the act of being kind. This means providing care that is in the best interest of the patient or client. A decision is beneficent or kind when the same decision would be made regardless of who was making it. Beneficence is closely related to the concept of “do no harm.” Actions or practices of a healthcare provider are “right” as long as they are in the interest of the patient and avoid negative consequences.
Justice: Equity and Fairness
Justice is often defined as a fair distribution of benefits and burdens, particularly in connection with misfortunes for which we cannot be held personally responsible (Nuffield Council on Bioethics, 2009). Distributive justice is the degree to which healthcare services are distributed equitably throughout society. Comparative justice refers to the way healthcare is delivered at the individual level.
Given the vulnerability of people with dementia, it is particularly important that the allocation of resources supports dementia care. This is in part an issue of appropriate resources and practical support, but also requires both caregivers and care workers to be recognized and valued as people who have an important expertise and role in society. A fair distribution of benefits and burdens should promote and sustain the person with dementia throughout the course of their dementia and help them maintain their autonomy as much as possible (Nuffield Council on Bioethics, 2009).
When interacting with a person who has dementia, the ethical reasoning behind most interactions is based on concern for the well-being of the person with dementia, with conflicts experienced between the desires to maintain trust while at the same time avoiding distress. Consideration for the person with dementia must coexist with beliefs about the moral importance of telling the truth and practical concerns about how to get through the day (Nuffield Council on Bioethics, 2009).
Some argue that failing to tell the truth is a breach of trust and undermines the remaining grip the person with dementia has on the everyday world. Others point out that telling the truth in circumstances where the person with dementia will not believe it may equally undermine trust because the person will think that they are being lied to. For care providers there is the added issue of whether telling a lie undermines the integrity of professional care, and for those involved in providing care there is the concern that failing to tell the truth is detrimental to their own moral well-being (Nuffield Council on Bioethics, 2009).
Ethical Conflicts and Dilemmas
Ethical dilemmas arise when there are equally compelling reasons both for and against a particular course of action and a decision must be made. It is a dilemma because there is a conflict between available choices. Usually one action, though morally right, violates another ethical standard.
A classic example is stealing to feed your family. Stealing is legally and ethically wrong, but if your family is starving, stealing food might be morally justified (Noel-Weiss et al., 2012). This is a “right vs. right” dilemma. When evaluating the alternatives, both courses of action have positive and negative elements. Right vs. right is an ethical dilemma, whereas right vs. wrong is a moral temptation (Kidder, 1996).
Working through an ethical dilemma until a satisfactory conclusion is reached, making decisions that lead to good actions, and avoiding regrets and negative consequences are the foundational principles of ethical practice (Noel-Weiss et al., 2012).
Examples of Ethical Decision-Making
Mr. Corona is 82 years old and lives in a cottage on his daughter’s property. He was a fighter pilot during World War II and has been fiercely independent his entire life. He is in the moderate-to-severe stage of ADRD and is unable to perform instrumental ADLs.
Mr. Corona is in the clinic for his annual evaluation. He does not know his address, the current date, the season, day, or time. His Mini Mental State Exam score is 11/30. When asked what he would do if the house caught on fire, he replied, “I would get some water and put it out.”
His three daughters discussed the situation with a social worker and a nurse practitioner in the neurology clinic. Although Mr. Corona’s safety is questionable, his daughters state that he has always been independent and does not like people taking care of him. They decide that for now they will support his living in the cottage.
Discussion: In making decisions on Mr. Corona’s behalf, his daughters are using the principles of autonomy and beneficence. Mr. Corona’s lifelong desire to be independent guided their decision to allow him to continue to live alone. They are balancing his need for autonomy with his need for safety and protection. The three sisters decide to take turns sleeping at his house overnight and have agreed to stop in during the day. They accept that he is at some risk living alone, but believe that his quality of life will be better in his own home and that living alone is consistent with their father’s life philosophy.
Mrs. Gould is 92 years old and has had Alzheimer’s disease for fifteen years. She has lived in a nursing home for the past seven years. She has had help with her meals for two years, but over the last month has intermittently refused food. As a result, she has lost 15% of her body weight in the past 6 weeks. The Physician Orders for Life-Sustaining Treatment (POLST) form that she completed when she was able to make her own decisions indicated that she did not want a feeding tube if she was unable to eat on her own. Her son has durable power of attorney to make decisions for her when she is no longer able to do so. He wants her kept alive as long as possible and wants a feeding tube inserted.
Discussion: Mrs. Gould’s son is acting from what he believes is the best course of action for her; however, he is expressing his opinion and neglecting to consider what his mother would say if she were able. He is not adhering to the principle of autonomy and is not demonstrating loyalty or support of his mother’s wishes. While her son might think that he is acting in concert with the principle of beneficence by feeding her, studies show that feeding tubes do not prolong life or improve quality of life in people in the later stages of ADRD (Sampson et al., 2009). At the very latest stages of ADRD, the natural course of the disease is that people stop eating and drinking.