When living is a fate worse than death

June 2024
Marianne Talman

Her name was Mary.  She was vivacious, smart with a mischievous wit. She was 90 years old.  She was dying and she was asking me to help her.

I remember distinctly when legislation was passed to allow patients the option of medical assistance in dying (MAiD) in June 2016.  I felt conflicted, ambivalent, and vaguely interested but I felt I did not need to invest time in learning the nuances of this change in the medical landscape, because I did not anticipate it would be relevant to my practice. Then I met Mary.  I was her attending physician during her hospitalization in the fall of 2016.  She had advanced lung disease and cancer.  She did not want any further investigations.  She had a management plan to ensure she would remain comfortable in her home where she would live out her life.  She had shortness of breath, a poor appetite and no energy, but these symptoms were being controlled.  I was very surprised then, when she requested an appointment to see me in my clinic following her discharge from hospital.  It was then that she told me that she appreciated what I had done for her in hospital but now she wanted me to help her navigate the system to undergo MAiD.

Suffering is manifest in many ways. There can be physical, emotional or anticipatory pain. There can be a host of somatic feelings that are horrendous. I had, however, not considered the construct of “existential suffering” until I met Mary. Yes, there is a fate worse than death.  Nothing to live for.  Nothing to look forward to. Anguish. There was nothing  in the arsenal of therapies that exist in the medical profession to alleviate this sense. Despite having a very comfortable home, with all the amenities, and a solid palliative care plan, Mary described the hell that was her existence. Upon listening to her, there was nothing I could do say or do that would sway her from her decision. There was no health care provider that could deal with her suffering.  I agreed to help her overcome the hurdles she would face before she could find the solace she was looking for.

MAiD involves several steps, with a long list of safeguards to ensure the patients fulfill strict criteria. I educated myself and helped Mary work through these steps and put her in contact with the health care team that could help her wish become reality.  In the meantime, I stayed in close contact with Mary, and helped her stickhandle the challenges she was facing with a family that did not initially support her decision.  

On the day she died, her friends and family each had a special moment with her.  She was radiant.  She was beaming.  She was at peace. When it was my turn, I asked her if she wanted me to remain with her in her bedroom as the doctors provided medications that would put her into a deep sleep, that would ultimately result in her death.  “Hell no.  I want you to be with my family.” Those were her last words to me.  The living room was brimming with emotion. Tears. Laughter.  Rejoice.  Relief.  Mary was gone. As she had wanted. The gratitude I received for the role I had played in Mary’s journey was extraordinary.  I will never forget the kind words and grace given to me by those who were left behind. 

Over 30 years, I have witnessed many deaths that have been drawn out and involved suffering, unnecessary harm, and moral injury.  Since that first MAiD death I experienced, I have been privileged to be part of death experiences that are truly patient-centred, humane, and conducted by highly skilled, non-paternalistic professionals who fully understand and respect the concept of patient autonomy.  Death occurring on the individuals’ terms. Each of these patients had a concurrent palliative care approach to the end of their life, but the suffering they experienced could not be met through palliation.

Mary changed my life. She taught me about suffering and gave me a new perspective on end of life care. She challenged some of the traditional view of the health care approach of life at all costs. She demonstrated that the reality of death is not something to fear, but to embrace.  We are fortunate in Canada to have the opportunity to fulfill the end of our lives in a way that embodies our values and preferences and can occur on our own terms.

Dr. Marianne Talman is a general internist at the Hamilton General Hospital and an associate professor at McMaster University.  She is a patient advocate, and outside her work she enjoys cycling and rock climbing.