Principles are general categories, rules, or guidelines that form the basis of a discipline. In ethics, there are various kinds of principles that include basic ethical categories (e.g., virtues, values, or rights), ethical commands or rules of conduct (e.g., not stealing, not harming, or treating others with respect), and guidelines for weighing outcomes (e.g., achieving the greatest good for the greatest number, distributing burdens and benefits fairly, or properly proportioning benefit to harm) (Ortmann et al., 2016).
Healthcare providers and caregivers are often faced with difficult ethical decisions. This is 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.
Research conducted with participants living with dementia raises important ethical questions, such as how to protect cognitively impaired persons against exploitation, how to design informed consent procedures with proxies, how to disclose risk-factors for dementia given the lack of evidence for their reliability, and how to apply risk–benefit considerations in such cases (Götzelmann et al., 2021).
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).
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.
Autonomy and Well-Being
Autonomy is the right of individuals to make decisions about their own healthcare and their own life. Residents must be told the truth about their condition and informed about the risks and benefits of treatment. Residents 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.
Avoid Generalizations About Your Residents
A dementia diagnosis does not imply the incapacity to make decisions, nor should it be the basis for assumptions regarding the person’s cognitive ability. In general, dementia is a progressive illness, but symptoms can vary from person to person. The progression is not necessarily linear, so knowing a person’s typical presentation should not lead to a sweeping generalization of their cognitive deficit. There can be high variation day-to-day and even hour-by-hour, with some people experiencing sporadic bouts of confusion or lucidity.
Source: Silva, Cascio, & Racine, 2020.
Empowering a person with dementia in decision-making is an effort to retain their autonomy, and it allows them to act as their own agent as much as possible. Specifically, in dementia research, empowerment in decision-making allows participants to make any decision they are cognitively able to and provides participants with assistance in the decision-making processes if needed (Silva, Cascio, & Racine, 2020).
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, 2009).
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.
Justice: Equity and Fairness
A stark number of 65+ are aging into poverty. At the same time, due to racial inequities, there is unequal access to services and supports in our aging service delivery.
Janet Y. Spears
Advancing Equity in Aging
Justice (equity and fairness) is often defined as a fair distribution of benefits and burdens, particularly in connection with misfortunes for which we cannot be held personally responsible. 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 (Nuffield Council, 2009).
Given the vulnerability of people with dementia, a fair and equitable allocation of resources is important to ensure access to good care. Partly, this is an issue of appropriate resources and practical support, but it 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 promotes and sustains people with dementia throughout the course of their dementia and helps them maintain their independence as much as possible (Nuffield Council, 2009).
When considering justice, equity, and fairness as they relate to the delivery of care, a conflict arises because resources are limited. In the U.S., equal access to healthcare does not exist, creating an ongoing concern about the distribution of resources, particularly as the population ages and the demand for services increases. Because assisted living is primarily private pay, the burden falls upon individuals, no matter their ability to pay.
For groups who have experienced histories of marginalization and discrimination and who continue to experience higher rates of illness and premature deaths than members of the mainstream population, achieving justice and equity is urgent (Ortmann et al., 2016).
Veracity (Truthfulness)
Truthfulness is taught us from childhood and it 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, 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 when the person with dementia will not believe it may equally 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, 2009).
Incorporating Ethical Principles into Care
Ethical dilemmas 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).
Recently, the use of intelligent assistive technology (IAT) has raised ethical issues in their use with people with dementia. Traditionally, assistive technologies involved mostly cognitive aids to support memory, aphasia, and agnosia; physiologic sensors to detect vitals and falls; environmental sensors to detect movement; and advanced security systems. Newer technology includes devices for assistance with activities of daily living, systems for cognitive and emotional assistance, health and behavioral monitoring, social interaction and engagement, remote communication, emergency alarms, and mobility aids (Wangmo et al., 2019).
Intelligent assistive technologies for people with dementia raise many ethical challenges. These technologies are designed for vulnerable older individuals with cognitive disability, who often lack the capacity to consent to their use. The devices collect large amounts of potentially sensitive, personally identifiable data including a person’s medical information and behavioral videos. Wearable IATs operate in close proximity to the patient’s body and may involve varying degrees of artificial intelligence, raising multiple ethical challenges (Wangmo et al., 2019).
A systematic review has observed that 67% of current IATs for dementia are designed in absence of an explicit ethical assessment. This raises concerns about the ethical viability of using these technologies with vulnerable individuals. Among the portion of IATs that did include ethical assessment, primary attention was devoted to respecting the autonomy of patients, preventing harm (non-maleficence) and promoting overall good (beneficence) (Wangmo et al., 2019).
Ethical concerns such as ensuring fair technology access (distributive justice) and preserving by design the privacy of end-users and their data appear underrepresented. The focus on autonomy is unsurprising considering that the need for IATs is often predicated upon the value of empowering older adults with dementia by increasing their independence and prolonging their independent living. Two previous reviews highlighted the importance of issues of informed consent, autonomy, privacy, data security, and affordability as key ethical concerns when using IATs among people with dementia. Other ethical concerns include stigma, social isolation, lacking user-engagement in the design of the technology as well as the ethical dilemma about whether IATs would and should replace human care (Wangmo et al., 2019).
Examples of Ethical Conflicts and Dilemmas
Maintaining Independence
Mr. Corona is 90 years old and lives in a cottage on his daughter’s property. He was a pilot during the 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.”
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 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 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 one 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 Alzheimer’s disease. At the very latest stages of Alzheimer’s, the natural course of the disease is that people stop eating and drinking.
Justice, Fairness, and Equity
Alycia is a 68-year-old Black woman who has been living independently in an assisted living facility in Florida. She has been able to pay the monthly fee for her room and board but without much left over each month. Over the past year, she experienced increasing difficulty with her balance and fell several times. She was afraid to tell anyone, so she reduced her physical activity, and limited her social participation in facility activities.
Alycia worked her entire life as a waitress and was never able to save much money. Prior to moving into assisted living, she spent more than 10 years caring for her husband. She was unable to hire a caregiver and was forced to cut back on her hours at work. After her husband died, Alycia sold her modest home in a quiet area of West Palm Beach for $185,000. She moved to an assisted living facility, which costs her $3,850 per month. She has calculated she could afford to live in assisted living for about 4 years before her money runs out.
Alycia did okay at first, then, after breaking her arm in a fall, she realized she was going to need help with some of her daily living tasks. She noticed that one of her neighbors had someone come in every day to help with shopping, bathing, and exercises. She was interested in hiring the helper but learned that it would cost $15/hour. She knew she couldn’t afford that, so she decided to go without.
Alycia managed to get by for another year, not sharing her difficulties with anyone in the facility. During that time, she experienced some cognitive changes—she couldn’t figure out how to work the TV and had difficulties with the phone. Normally a fastidious woman who prided herself on her appearance, she stopped bathing and stayed in bed or in her recliner most of the day.
One day she was found on the floor next to her bed, incontinent and confused. She was admitted to the hospital with a broken hip, dehydration, and delirium. After surgery and a 3-week stay in rehab, she was admitted to a local nursing home.
Questions
- Is it fair or equitable that some people can afford private-pay help in an assisted living facility while other cannot?
- Do you think Alycia could have had a better outcome if she had been able to afford a regular caregiver?
- Does Florida pay for private caregivers in assisted living facilities?
Discussion
The uneven distribution of care and assistance is an example of distributive justice. When supply is low or costly, many will be unable to get needed help. In Florida, the average yearly out-of-pocket cost for a person living in an assisted living facility is $44,400 and can be much higher.
Adverse health conditions are disproportionately associated with race, ethnicity, occupation, and socioeconomic status. A higher burden is experienced by Black Americans and other minority groups, which reflects the impacts of systemic racism and socioeconomic factors. These social groups also experience health inequities, defined as “systematic differences in the health status of different population groups” (NAP, 2020).
Alycia may be eligible for financial assistance from the State of Florida through the Optional State Supplements program. The State may supplement her income to cover room, board, and other services provided by the ALF or other authorized facility. This supplementation will be combined with Alycia’s SSI or disability benefits—not to exceed an amount set by the State (FLDOEA, 2016).