Advance Directives and Dementia Care

The ability to choose what happens with our body is one of the cornerstones of modern health care. Indeed, autonomy is so important that it is heralded as one of the four principles of biomedical ethics, according to Beauchamp's and Childress' famous work Principles of Biomedical Ethics. Respect for autonomy typically involves securing informed consent, what a "reasonable patient" would want to know about a procedure. However, it is not always possible to do so. For example, children are not viewed as capable of consenting to medical procedures, with limited exceptions. Alternatively, adults may also be unable to consent if they are incapacitated. One of the most powerful tools patients can provide to ensure their wishes are respected, should they become incapacitated, is the advance directive, a legally binding document that instructs medical staff as to the care the patient wishes to receive or not to receive.

Although advance directives may help a patient communicate their desires for treatment, these documents are not without logistical and ethical obstacles. In the last decade, one specific controversy has involved the authority of such documents for patients with dementia. The concern centers around how a patient's desires and values prior to the onset of dementia may differ after experiencing dementia. Some lines of metaphysical thinking even go so far as to question if the patient prior to dementia is the same person with dementia. Of course, this abstract inquiry is not the most useful for concrete decision-making. The more pressing question is how to navigate situations where a patient expressed one desire prior to the onset of dementia but a different desire with dementia. The significance of this question cannot be overstated. For example, what if a patient writes that they do not wish to be fed if they cannot feed themselves yet signals nursing staff for more food? More seriously, what if a patient wishes to be euthanized should they develop dementia, as occurs in the Netherlands, yet expresses a desire to live once they have severe dementia?

Those who argue for following the advance directive state that since the patient does not have decision-making capacity, the wishes of the patient expressed after the onset of dementia cannot supersede the wishes made prior to the onset. One complicating factor involved with this judgment is that decision-making capacity is specific to a particular decision. In other words, a patient may have the capacity to make one decision, say concerning a minor test, but not have the capacity to make more complicated decisions. If there is any decision for which everyone has the capacity, surely it must be the decision to continue one's own life. Even this question proves challenging however, as was noted in a recent article in Hastings Center Report. The patient in question had stipulated in an advance directive that they wished to be euthanized should their dementia progress, and repeatedly told her caretakers that she wished to die. However, this patient was also incredibly disoriented and, when asked if she wanted help dying, rejected the idea. Ultimately, the patient was euthanized followed by a highly publicized legal battle.

Some who argue for following the present wishes of a patient with dementia over their advance directive assert that dementia may be a "transformative experience" in which the patient's change in desires is a morally legitimate request that ought to be followed. In addition, the present state of the patient may potentially factor into how the advance directive is or is not followed. For example, if the patient appears extremely satisfied with their life, that might weigh differently on care providers than if the patient is chronically distressed. In any case, there are compelling arguments for both following the advance directive and following the present wishes of the patient with dementia.

Aside from issues arising from advance directive use, dementia presents ethical challenges to many areas of health care, including research, access, and inclusion in society. As the population continues to age, more individuals will be diagnosed with various types of dementia, and we must prepare, as a society, for how we are to treat these persons in an ethical and just manner, respecting their dignity and ensuring their well-being.