A focus on respecting autonomy in this case leads to question of whose autonomous wishes should be respected – the Mr. Hendricks of 20 years ago who wrote the advance directive, or the Mr. Hendricks of today. There is no consensus around this in the bioethics literature.
An advance directive is a tool that helps health care providers express their respect for patient autonomy.
Even as his dementia progresses, Mr. Hendricks retains some degree of autonomy and is able to express his preferences, whether or not he has Capacity sufficient to make decisions that are recognized as legally binding upon others. We often express respect for this sort of autonomy, even if we do not find it sufficient to alter the course established by the wishes set out in the advance directive, by giving an individual the ability to make “small” decisions for themselves, whether or not they fully understand the nature of the decision or the consequences of various choices.
Our response as to how autonomy should be respected in this case might also depend upon the form that the advance directive takes. We might feel that an instruction directive is more clear and compelling than one that names a substitute decision maker, and that we thus have a greater obligation to respect the specific instructions that were laid out previously. On the other hand, depending on the content of the instructions, we might feel more comfortable with a substitute decision maker who can reason through the specifics of this situation, drawing on key values and principles.
It is not clear that, had Mr. Hendricks not developed dementia, that his current wishes would be congruent with those he had twenty years previously. Our preferences often shift with time and experience, although many remain stable.
In the progression of many diseases, patients often discover that states of being that seemed intolerable when considered from the outside – such as using a wheelchair, for example – can be compatible with what the patient feels is a good quality of life once the patient is actually at that point. Similarly, it is a general problem with advance decision making that we often don’t know what we will want until we’re in the situation – take, for example, patient preferences regarding pain management during labour and delivery.
This is a case where a focus on the value of respecting autonomy can lead to very different recommendations, depending on which details of this situation one focuses on and and how one sees the value of respect for autonomy being translated it into practice. Much turns on what is meant by the exhortation to respect autonomy.