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To be perfectly honest, reading about a journalist who made headlines in 1998 when he was fired from the New Republic for fraud was not on my reading list. But someone who knows me well, encouraged me to spend the time on a 24-minute read. The spiraling of Stephen Glass’s career is agonizing to read and recounted in an article written by Bill Adair in the December 4, 2021 edition of Airmail.

Stephen Glass’s fraud was so notorious that his downfall became a Hollywood movie, Shattered Glass.

While reading about the unraveling of Glass’s life, I became even more engaged when his wife Julie Hilden was introduced into the story. She was a lawyer, author and editor. Then, in her early 40’s,  she developed some vague symptoms that suggested early onset Alzheimer’s. She was tested, told she was negative, didn’t completely believe it, and then didn’t want to discuss it any further.

Her experience with Alzheimer’s was personal. She had even written a book years before after watching her mother die from the disease. In The Bad Daughter, Hilden fantasized how she would commit suicide if she tested positive for the early onset Alzheimer’s gene, to avoid putting a lover through the ordeal of long-term care.

Her story brought me back to a column I had written in 2017, which for convenience, is re-printed here. It does not deal with assisted suicide but as you read it, you can imagine including that directive.

Bear with me; there is a connection.

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?

——

Both the hypothetical Margo and Glass’s experience challenge us to rethink how advance directives should be written.

Adair carefully takes Glass through recounting this painful recollection of the vibrant woman he had spent almost two decades of his life loving. And what does she ask of the man who had spent more than 15 years committing to never lying again, no matter how that would impact his life.

 You can do any research and work you want to help me, but you can’t involve me. I love my life. I’ve never been happier. I want to live in that happiness and be the way I am. We’re just going to live in this way, and we don’t talk about it.

It was a command to lie. “The whole focus of his life has been remaking himself into an honest person,” said a friend of 20 years.

And here, the woman he loved, asked for his complicity.

Medical ethicists call this approach “therapeutic fibbing” and consider it beneficence and non-maleficence. Maybe we could look at it in this way. Glass was joining Julie in her world, fostering peace and dignity, rather than forcing someone with impaired cognition into our world. Could this be in Julie’s best interests?

Glass says he decided against assisted suicide because “she actually loved her life more than she ever had and she expressed enormous joy in her life.” Despite what she’d written two decades earlier, Glass decided that “your former self doesn’t get to kill your current self” if your current self doesn’t want it.

Glass’s experience was not a hypothetical exercise. It was real life.

Julie died at 49 years of age in 2018.

 

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