Those who work in dementia care settings face difficult ethical decisions each day. Caregivers must balance the needs of multiple residents 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 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.
Key Ethical Concepts
The language of biomedical ethics is applied across all practice settings, with four basic principles commonly accepted. These principles are (1) autonomy, (2) beneficence, (3) nonmaleficence, and (4) justice. In health fields, veracity and fidelity are also spoken of as ethical principals.
Autonomy is the right of individuals to make decisions about their own healthcare. Respect for autonomy requires that patients be told the truth about their condition and informed about the risks and benefits of treatment. Under the law, patients are permitted to refuse treatment even if the best and most reliable information indicates that treatment would be beneficial, unless their action may have a negative impact on the well-being of another individual. Such conflicts set the stage for ethical dilemmas.
Beneficence is the act of being kind. A beneficent practitioner provides care that is in the best interest of the patient. The actions of healthcare providers are intended to bring about a positive good. Beneficence raises the question of subjective and objective determinations of benefit versus harm. A beneficent decision can only be objective if the same decision would be made regardless of who was making it.
Beneficence is closely related to the concept of nonmaleficence or “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.
Traditionally, the decision-making process and the ultimate decision were the purview of the physician. This is no longer the case; the patient and other healthcare providers, according to their specific expertise, are central to the decision-making process (Valente & Saunders, 2000).
Justice: Equity and Fairness
Justice speaks to equity and fairness in treatment. It may be seen as having two types: distributive and comparative. Distributive justice addresses the degree to which healthcare services are distributed equitably throughout society. Comparative justice refers to the way healthcare is delivered at the individual level. In a society where equal access to healthcare does not exist, there is a continuing concern about the distribution of resources, particularly as the population ages and the demand for services increases.
Veracity (truthfulness) is at its core respect for people (Gabard & Martin, 2003). Veracity is antithetical to the concept of medical paternalism, which assumes patients need to know only what their healthcare provider chooses to reveal. There has been a dramatic change in attitudes toward veracity and it forms the basis for the autonomy expected by patients today. Informed consent, for example, is the ability to exercise autonomy with knowledge.
Decisions about withholding information involve a conflict between truthfulness and deception. There are times when the legal system and professional ethics agree that deception is legitimate and legal. Therapeutic privilege is invoked when the healthcare team makes the decision to withhold information believed to be detrimental to the patient. Such privilege is by its nature subject to challenge.
Fidelity is loyalty. At the root of fidelity is the importance of keeping a promise, or being true to your word. It speaks to the special relationship developed between patients and their healthcare providers. Each owes the other loyalty; although the greater burden has traditionally been on the healthcare provider, increasingly the patient must assume some of the responsibility (Beauchamp & Childress, 2001). Fidelity often results in a dilemma, because a commitment made to a patient may not result in the best outcome for that patient.
Incorporating Ethical Principles into Care
Healthcare providers are routinely called upon to make ethical decisions. This is particularly true in the complex and ethically difficult area of dementia care. To add to the complexity, national clinical practice guidelines fail to address a full spectrum of dementia-specific ethical issues in their recommendations (Knüppel et al., 2013).
The Nuffield Council on Bioethics has published dementia-specific ethical guidelines that can guide the process of ethical decision-making in 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).
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).
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).
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 (Folstein et al., 1975) 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.
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 principles of autonomy or fidelity. 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 ADRD (Gillick & Volandes, 2008). At the very latest stages of ADRD, the natural course of the disease is that people stop eating and drinking.