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When Life With Dementia And Advance Directives Clash

What makes me me? If I become severely demented, should my advance directive direct my care? What does my healthcare agent owe me when my life seems so diminished?

This ethical dilemma is vividly demonstrated in a hypothetical case commonly debated in bioethics. In a well-known example from Life’s Dominion, Ronald Dworkin, an American philosopher, asks us to consider the case of Margo:

Margo has severe dementia, and she previously issued an advance directive prohibiting the use of invasive and non- invasive medical treatments that aim to prolong her life. Margo has contracted pneumonia and needs antibiotics in order to survive. However, Margo is happily demented. She enjoys basking in the sun, eating peanut butter and jelly sandwiches, thumbing through books and painting sets of circles on paper.

Dworkin contends that Margo is still the same person, but at a different stage in life. He suggests that it would be an “unacceptable form of moral paternalism” to disregard a patient’s written instructions, because he or she still derives some benefit from life in a diminished state. Dworkin adds that the “competent and incompetent selves are one and the same person, and the autonomous choices constitutive of a life lived with authenticity and integrity need not lose their authority due to the onset of severe dementia.” To think otherwise makes a mockery of Margo’s “precedent autonomy.”

Not all philosophers agree.

Rebecca Dresser, a Washington University bioethicist and law professor, espouses the need for limits upon advance directives. She emphasizes the best interests of the patient, maintaining that patients may not understand the ramifications of their decisions.

“A particular problem with dementia is that people making a directive may not envision how they would experience their lives with dementia in the future. So the question becomes, can people completing advanced directives imagine what they would want in a future state of dementia or other impairment when they won’t have the same concerns that they have now?” She adds that “a policy of absolute adherence to advance directives would mean that we would deny people like Margo the freedom we enjoy as competent people to change our decisions that conflict with our subsequent experiential interests.”

Margo’s apparent happiness would seem to make a morally compelling argument for overriding the advance directive. If it is in a severely demented patient’s best interests to receive care, then they should be treated. If it is not, when they should not be, plain and simple.

But what do we do for those patients who are combative and whose lives seem in constant distress? Should apparent happiness or distress make the difference? What if Margo had pneumonia and was difficult to manage? Would we automatically honor the directive, or would we discuss her best interests?

Cases like this raise the most profound questions about what is best for a future self. How can we know in advance whether the experience of old age with dementia will still seem valuable, even though it is not the life we would freely choose? Can we really know that such a life would be worse than death if we are seemingly happy? Do we possess a right to order others through our advance directives to forego life-sustaining treatment on our behalf?

Margo challenges us to rethink how advance directives should be written.

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