Healthcare providers, caregivers, and family members are often faced with difficult ethical decisions, particularly true in the complex and ethically difficult area of dementia care. Caregivers must balance their own needs while considering issues related to 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 put aside their own needs and desires and carry out what they believe the person with dementia would do if able.
Ethical issues can range from questions about how to engage with a person with dementia who is unwilling to accept that they have the disease to how to decide whether manipulating a person with dementia is ethically permissible if it promotes their best interest (Lauridsen et al., 2023).
10.1 Key Ethical Principles
In biomedical ethics, several basic ethical principles are commonly accepted. These are (1) autonomy and well-being, (2) beneficence, (3) justice. In addition, veracity (truthfulness) is an ethical principle that must be observed in all situations.
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, latest available).
10.1.1 Autonomy and Well-Being
Autonomy is the right of individuals to make decisions about their own healthcare and their own life. Clients must be told the truth about their condition and informed about the risks and benefits of treatment. Clients can 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).
The use of physical restraints can create an ethical dilemma by limiting a person’s autonomy. Their use is associated with increased instances of falling, the development of hospital-associated infections, incontinence, and cognitive decline. Restraints also increase dependency in activities of daily living and walking.
10.1.2 Beneficence: Doing Good
Beneficence is the act of doing good. This means providing care that is in the best interest of the 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 beneficent as long as they are in the best interest of the client and avoid negative consequences.
10.1.3 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. It also means laws are applied equally and fairly (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 partly 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 people with dementia throughout the course of their dementia and help them maintain their autonomy as much as possible (Nuffield Council on Bioethics, 2009).
10.1.4 Veracity (Truthfulness)
Truthfulness is taught to us from childhood and is particularly important when interacting with those who have dementia; ethical reasoning behind most interactions must be driven by concern for the well-being of the person with dementia. Conflicts inevitably arise between the desire to maintain trust 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 grip the person has on the everyday world. Others point out that telling the truth even though the person with dementia will not believe you may undermine trust because the person will think that they are being lied to. For healthcare 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).
10.2 Incorporating Ethical Principles into Care
Ethical dilemmas or ethical challenges arise when there are equally good 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. 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).
Kidder calls this 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 identified as 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).
Ethical issues in dementia care can be a conflict between respecting the self-determination of a person with dementia, in terms of what they want, and acting in their best interest. Other ethical issues concern how caregivers prioritize the needs of the people they are caring care for. This includes avoiding causing harm to people with dementia while allowing them to make their own decisions (Lauridsen et al., 2023).
10.3 Examples of Ethical Conflicts and Dilemmas
Maintaining Independence: Mr. Corona
Mr. Corona is 90 years old and lives in a cottage on his daughter’s property. He was a pilot during Korean War and has been fiercely independent his entire life. He is in the moderate-to-severe stage of dementia and is unable to independently perform many of his ADLs.
Mr. Corona is in the clinic for his annual evaluation. He does not know his address, the current date, the president’s name, 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.” This answer is consistent with his background and training and therefore logical to Mr. Corona.
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, albeit with close oversight. 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.
Ceasing to Eat: Mrs. Gould
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 needed help with her meals for two years, but over the last month has intermittently refused food. As a result, in the past 6 weeks, she has lost 15% of her body weight. 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 one might think 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 Alzheimer’s disease. At the very latest stages of Alzheimer’s, the natural course of the disease is that people stop eating and drinking.
Principles of Justice and Injustice: James Coppola
Jimmy Coppola is a 90-year-old, increasingly non-verbal resident living in a small nursing home in Gainesville, Florida. As his verbal skills have declined, he has had less and less meaningful interaction with other residents, staff, and family members. Recently, he was moved to a new, somewhat-isolated room a relatively long distance from the nursing station and activities room. His new room has no pictures or décor that might help others get to know him as a person. Other rooms in the facility, with people in earlier stages of dementia, are warm, cozy, and welcoming. In general, it was noted that residents in the facility in the later stage of dementia, especially non-verbal residents were in the same situation as Jimmy.
Discussion: Recall that justice is related to a fair distribution of benefits and burdens. Although most caregivers and healthcare providers may not see Mr. Coppola’s situation as unjust, it is in fact a common example of a lack of comparative justice: the way in which healthcare benefits are delivered at an individual level. Mr. Coppola is experiencing a type of injustice described as “a distinctive class of wrongs, in which someone is disingenuously downgraded and/or disadvantaged in respect of their status”. This form of injustice is rooted in unfair prejudice, stigma, ignorance, and isolation.
Caregivers, and even family members, may view people with dementia as stupid, child-like, crazy, or not themselves anymore. They may believe that people with dementia are incapable of purposeful and meaningful communication and unable to participate in relationships and activities. Non-verbal people with dementia are frequently ignored because it is more challenging to see and recognize them as relational human beings when they are no longer able to respond verbally. This can be viewed as a form of non-verbal injustice.
Recent studies have shown that benefits offered to verbal residents are denied to non-verbal residents and other options are often not offered. If a person is excluded from social activities and, therefore, social interactions in advance, they are essentially silenced.
Most people with language inhibiting dementia not only struggle to communicate verbally but also struggle to understand verbal communication. For this reason, it is vitally important to pay close attention be particularly attuned to your own facial expressions, eye contact, bodily contact, posture, hand gestures, and proximity to the other person.
Learning to use gestures to communicate can open caregivers and healthcare workers a shared openness with the non-verbal person. This enables family members and caregivers to participate in interactions using alternative forms of expression and communication, transforming interactions for both parties.
Modified from Spencer (2023), Epistemic Injustice in Late-Stage Dementia: A Case for Non-Verbal Testimonial Injustice.