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 (Knüppel et al., 2013). 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.
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).
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. 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).
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
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 people with dementia throughout the course of their dementia and help them maintain their autonomy as much as possible (Nuffield Council on Bioethics, 2009).
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 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 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 on Bioethics, 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).
Examples of Ethical Conflicts and Dilemmas