Medical aid in dying

He had been admitted to palliative care with a terminal condition and, in accordance with his wishes and those of his family, he would only receive palliative care so that he could die in peace.

Initially, his status deteriorated quickly. And then one day, without anyone knowing exactly why, it plateaued. Since then, he had lain in his hospital bed, barely conscious and near death. Sometimes, when he was turned, he let out a barely audible moan. His daughters—he had only 2 daughters—took turns sitting by his bedside. Knowing that he was dying, they hoped that death would come quickly.

Only death did not come!

He looked worse and worse; he was emaciated and pale. His eyes sank into their orbits and his mouth gaped like an enormous crater. He looked like a cadaver. And there was his breathing: laboured, ragged, Cheyne-Stokes breathing that resisted all attempts to bring relief. It was so loud that it filled the room; it could be heard all the way to the nurses’ station. And with each long pause came the possibility that he had finally reached the end of his life.

Yet death did not come.

“Doctor, how much longer will he live? When do you think he will die?”

To reassure them, I told his daughters that, generally, once a person stopped drinking and eating and was bedridden and unconscious, breathing the way their father was breathing, death would soon follow. Yet, the days passed and he didn’t die. It seemed as if he was refusing to leave. How was that possible? He was more and more cadaver-like, yet still alive. And the laboured breathing and rales punctuated by pauses continued. They were all that was left.

“Doctor, this makes no sense. How much longer will this go on? Our father deserves a better death. Can’t you do something? You know ….”

One evening, after my rounds, I entered his room, hoping that his suffering had finally ended. But he was still there. Still living (if a person in his state can be said to be living) or, at least, not yet dead.

It was late. Darkness had fallen. The lamp on his bedside table had been turned on. He was alone, save for the sound of his laboured breathing that filled the room. It was then that I noticed a photograph of him on the bedside table. A photo from another time. Tanned, wearing a swimsuit, he smiled proudly as he held the rigging of a small sailboat docked by the shore. What a handsome man!

I was taken aback. In this one hospital room, there were 2 versions of a single man. One tall, strong, and handsome. The other emaciated, bedridden, and dying. The contrast was shocking. And then I remembered that I had raced a sailboat, too. Mine was a 470. Perhaps you know the 470? An untameable bucking bronco that loves the wind. It rides the crests of waves, heeling over with each gust and threatening to capsize at any moment. And with each change in direction—each tack—the sail flaps violently before it is sheeted in and the tiny boat settles down again. The wind is everywhere: thunderous, chaotic, unpredictable. Just like his breathing. I remembered how happy I had been, perched on the trapeze, skimming the water, leaning back to keep the boat level and prevent it from taking on water. I remembered my fear of ending up in the dark, deep water.

The next day, his daughters came to see me.

“Doctor, can’t our father be helped to die?”

You might be thinking that this was a reasonable request and that there comes a time when a life is no longer a life and there is no longer any reason for living. Yet, if you read the conditions for access to medical aid in dying (MAID) carefully, you will see that a person requesting this aid must be capable of consenting to care. Our patient was no longer capable of consenting to anything.

And herein lies the biggest dilemma with MAID. When should a person request it? Today is too soon and tomorrow might be too late. Some people might think that MAID is the answer to all of their anxiety and fear around dying. That if, one day, things get too difficult, too hard to bear, MAID will take care of everything. But they would be wrong: MAID can be offered at a single moment in time, at some point in the future. Before this point, it’s too soon; after, it’s too late. Before, you are racing through the water on your sailboat. After, you are lying on your death bed.

And we cannot know the mind of a man lying on his death bed. Perhaps the laboured breathing that we find so agonizing sounds to him like the wind, filling his sails and threatening to rip them to shreds before capsizing his tiny boat. Perhaps he is leaning back on the trapeze, holding the sheet taut, happy to the point of bursting.

Perhaps. Who knows.

• Copyright© the College of Family Physicians of Canada