I felt oddly uncomfortable leaving my patient’s home. It was unusual for me to be leaving, knowing with certainty that the patient would not survive the day, and knowing that I would not be going back to the home, not even for the pronouncement of death, which is my usual practice.
Duane was a man in his 60s referred to our community palliative medicine group with a degenerative neuromuscular disorder. At the time of the referral, he had already made the decision to pursue a medically-assisted death (MAiD), something that our group does not provide. I wondered why the referral was made to us in addition to the local MAiD providers, since he was hoping for MAiD within a week or so. I reviewed the information provided and saw that he had a number of symptoms that had not really been addressed and I felt that this patient, like anyone else quickly approaching the end of life, deserved better symptom control, regardless of whether his death was to come about naturally or by his own intent.
I got to know Duane very quickly. I recognized much of the fiction on his bookshelf at home, as he shared many favourite authors and genres with my wife, as well as musical tastes. I was impressed by his collection of amazing guitars, which sadly he could no longer play due to his illness. He had an infectious zest for meeting people and welcomed my assistance with his symptoms. With some simple interventions, he found his pain was under control, his breathing was less uncomfortable and his appetite had returned. His energy was better and he was able to enjoy his life more. He was very appreciative of the information provided to him regarding the palliative approach to his care and he took his time considering his options. He was most thankful for knowing that at least there were options.
I was clear in telling him that I was not there to change his mind about MAiD, and that the decision was his to make.
My role was to improve his quality of life, for however long that life should continue, just like any other patient.
Duane’s wife, Sherry, struggled with his decision to proceed with MAiD, but she and their children all supported Duane’s decision.
When I saw Duane that last time, he was almost euphoric. His disease, which had taken away his control over so many parts of his life, was going to be controlled by Duane’s ultimate decision. He was eating a huge steak, and offered me some. His MAiD procedure was going to take place that evening.
I have gotten used to the fact that when practicing palliative medicine, arriving in a person’s life so close to the end usually creates a rapid building of a relationship between physicians/nurses and the patient and his/her circle of care. My first visit with Duane was on the 17th of the month, my last was on the 25th. I felt I had known him much longer, however.
On that last day, I told Duane that I was happy that he was happy, and that I was happy knowing that he was made his decision having experienced some of what palliative care could offer.
I was sad that his life was ending but I understood, after our long conversations, where that decision was coming from. It was very much in keeping with the person himself. Despite that, I told him that I did not feel that I could be in attendance for his death. My own personal ethics are at odds with MAiD, and I felt that witnessing his death was something that I would not want to see.
Sherry told me later that his death was peaceful, that he never wavered, and that the doctor was sensitive and competent. Nothing unexpected happened.
In my years providing palliative care, I have witnessed many manners of deaths, some dramatic, most not. I have gotten to know many people in their last days, weeks, months. I don’t know why Duane’s journey reappears periodically in my mind, months later. Well, I have some ideas about why: the personal connection, the intensity of the work, his almost unconquerable optimism in the face of his upcoming death. But despite the fact that I have experienced all of these elements with other patients, Duane keeps resurfacing.
I’m sure I will figure it out eventually.