We need to talk about dementia and death

Diane was a loving and devoted mother. For a long time, she devoted herself to taking care of her husband and their two daughters, in a beautiful big house surrounded by cornfields, in Iowa. But, towards the end of her life, the loving mother changed.

Having become a widow, Diane got together with her neighbor, Denzil, the same one she once accused of not smelling like roses every day. She, always dressed to the nines, began to wear jeans and old caps. She, heir to a small fortune, signed a power of attorney for Denzil, three times divorced and penniless, to manage her finances.

Last detail, and not least: Diane suffered from dementia.

This story, told in May 2023 by Katie Engelhart in the New York Times Magazine1, just won a Pulitzer Prize. It’s a moving story, but not for the reasons you might imagine. We begin it believing we are dealing with a case of exploitation of a vulnerable elder. And then, while reading, everything changes.

We eventually understand that Denzil loved Diane. And that she loved him back.

They both really loved each other. Despite the dementia.

The Diana from before, the one who was in her right mind, had asked her daughters to take care of her. Now she begged them to let her live her life, or what was left of it, as she saw fit. “I want to be able to be my own person before I die,” she kept telling them.

This report poses a delicate question, a question that many people in Quebec are likely to ask themselves in the years to come: when cognitive decline changes our loved ones, should we respect their new wishes?

This long paper discusses a case that has divided philosophers and dementia specialists for 30 years: that of Margo, an American woman who suffered from early-onset Alzheimer’s disease.

At 55, Margo didn’t recognize anyone. She spent her days painting, listening to music… and experiencing perfect happiness. “Despite her illness, or perhaps because of it, Margo is undeniably one of the happiest people I have known,” doctor Andrew Firlik wrote in 1991 in the Journal of the American Medical Association.

Two years later, philosopher Ronald Dworkin wondered what would have happened if, before slipping into dementia, Margo had signed a document demanding that she end her life as soon as possible. Would it have been necessary to kill the Margo of today, demented but perfectly happy, because the Margo of the past would not have wanted to live in these conditions?

Ronald Dworkin believed that yes, it was necessary to respect the wishes of the Margo of the past, the one who was capable of making decisions about her own life, and above all not to give in to the amnesiac whims of the Margo of today.

Most of the experts who subsequently had to resolve this moral dilemma do not share his opinion. The life of today’s Margo, they argue, still has meaning. What doesn’t is putting the desires of a person who no longer exists before those of the person who is there in front of us.

Everyone, they say, can change their mind.

On Wednesday, in the House of Commons, the Bloc Québécois tabled a bill to allow advance requests for medical assistance in dying (MAID) from people suffering from a cognitive neurodegenerative disorder, such as Alzheimer’s or Parkinson’s disease. .

On this subject, the Bloc has practically the entire Quebec population behind it. The extension of MAID to people suffering from dementia is the subject of a broad consensus: 88% of Quebecers are in favor. Six professional orders in Quebec are unanimously demanding a modification to the Canadian Criminal Code in order to authorize advance requests in the province.

This is because under the current Code, people requesting MAID must provide consent just before the final injection. Demented people, who obviously can no longer consent to this step, are therefore “condemned to years of suffering, wandering and dementia, prisoners of their body”, denounced the presidents of the College of Physicians and the Quebec Bar. and the Order of Nurses of Quebec in an open letter addressed to Justin Trudeau2.

For the vast majority of patients, I have no doubt that this is indeed the case. That said, I wonder… what happens to people with dementia who don’t suffer, or at least not right away? What happens to those that change as the disease progresses?

What happens to the happy Margos?

I am not opposed to advance requests for MAID. On the contrary, I even wrote a plea3 in their favor. In 2021, Sandra Demontigny told me about the ordeal of her father, who died of early onset Alzheimer’s at the age of 53. In the end, the poor man had to be tied to his bed. Sandra Demontigny, who suffers from the same illness as her father, has sworn not to end up like him.

I wish it to him, with all my heart.

I hope that all Quebecers can choose for themselves not to vegetate in a layer at the bottom of a CHLSD before dying. The sooner they have this choice, the better.

However, I believe that we must prepare for it. We must be able to discuss the questions that such requests will inevitably raise, in order to avoid possible slippage.

Editor-in-chief of Everybody talks about it, Manuelle Légaré is preparing a documentary piece on AMM. Last week, she told Patrick Lagacé4 the trouble she had to know in advance the day, time and precise place of the death of her father, the comedian Pierre Légaré. “But in the end, we weren’t in his shoes,” she told him. It was her decision. »

It was his decision because Pierre Légaré had kept his head – which he had toughness, at that. But in the case of advance requests for MAID, it will be the decision… of the loved ones.

It will be the children who, very often, will have to choose the precise day, time and place of their mother or father’s death. And who will have to make this choice their entire life.

It can be heartbreaking at times. Experts tell us that neurodegenerative diseases lead to death in conditions of total indignity. Okay, but when? I mean, when does life become too unworthy to live? When the person no longer recognizes their loved ones? When does she stop talking? When she retreats into her world?

What if she seems happy, despite everything? What if, on the contrary, she becomes aggressive?

What if supportive housing ends up costing $10,000 a month? Will there be family pressure to push Grandpa to the grave a little sooner than expected?

We need to talk about these things. Openly. Quietly. It’s coming.

1. Read the article from New York Times Magazine (in English)

2. Read the letter “Medical assistance in dying: advance requests must be authorized in Quebec”

3. Read the column “The Urgency to Die”

4. Read the column “Leave the dying alone (and love them)”

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