The following story is like so many others where our healthcare system fails to respect the wishes of a suddenly and seriously ill person. This is the sad story of the end of the man in my life, a love like few others. In this son, this father, this spouse, this brother and this exceptional brother-in-law, all will recognize the benefits he was able to bring to each being he knew.
Last January 11, overwhelmed with pain, he was diagnosed with pancreatic cancer with pulmonary embolisms. She was offered an intervention to reduce pain (celiac block), which was performed on January 24. Although the procedure went well, it had no effect in relieving him. Until then, from one prescribed medication to another, we were looking for the right doses and combinations without success.
On the evening of the operation on January 24, he suffered a heart attack and was admitted again to the Sacré-Coeur hospital, where he had received the diagnosis.
When we got home three days later, we were offered follow-up in the palliative care outpatient clinic and in oncology as well.
I must underline the quality of the staff approach, at all levels of care. From the emergency department to the various clinic workers, everyone was exceptional and shared their empathy and professionalism with us.
Our first outpatient palliative care appointment was on February 3 with Dr. Olivia Nguyen. Her kindness, compassion and concern touched us deeply. Also, his relief strategy helped us a lot. A soothing balm had just settled on a burn.
From this first meeting, almost three weeks after the announcement of his illness, my lover expressed his wish to request medical assistance in dying, his illness being already advanced.
Dr. Nguyen assured us that her condition allowed it, that her request was valid the same day and that there would be little or no delay in obtaining it. We returned home, relieved, equipped in terms of medication and resigned to enjoy the months that remained to live together.
Three days later, Dr. Samini from the oncology clinic told us of a grim prognosis. Aggressive chemotherapy was prohibited because it risked causing another heart attack. All that remained was mild chemotherapy aimed at alleviating the symptoms.
We left with this information and went to think together.
On Friday, February 10, we had a follow-up phone call with Dr. Nguyen to verify the effectiveness of the medication. She had to increase the doses of analgesia and my lover then reiterated his request for medical assistance in dying when his body showed signs of deterioration and his quality of life was affected.
I must specify that, despite the seriousness of his illness, my lover remained independent although very tired. He had the courage to put in order, in only three weeks, a quantity of documents to facilitate my task during his eventual departure.
He kept telling me, “I don’t want to suffer, I don’t want to die dragging on or slowly withering away. »
We had thought long and hard about illness and death, our respective readings had brought us there, long before it was reached. There were no taboo subjects between us. The most important is and always has been the quality of life and dignity at the time of departure.
Cruelly, that same Friday of the phone call with Dr. Nguyen, he suffered a massive stroke in the evening and quickly fell unconscious.
The emergency services of Deux-Montagnes, where we live, intervened with impressive speed and efficiency and I thank them for that.
We were offered palliative care for comfort and pain, that’s all they could offer us.
The objective of all this testimony is to lay the foundations of a situation that risks imposing itself on others. Our family and I had to witness for several days the horror of the gradual and slow end of life of a loved one, good, appreciated by all, wondering what there was to remember from this traumatic event.
We are all trying to find meaning in this unfortunate episode that escaped us and which, in the space of a month, left us very little room for maneuver to settle the essentials, including his ultimate will. The pain of our children is indescribable as much as the disarray of a whole family and friends he cherished.
Faced with the image imposed by the circumstances of a body which is devitalizing before our eyes, which is shrinking day by day, from groans to lugubrious gurglings, from respiratory pauses to pauses in our own breaths, we watch, wait, let’s hope for a liberating end for him and for us.
This writing is not intended to be a complaint against anyone. Our healthcare system is doing what it can, with its strengths and weaknesses, just like the humans that we are.
The objective is to testify to an unacceptable situation for each being who, in full knowledge of the facts, has expressed his wish not to undergo it but has found himself stuck in the meshes of a law that is still too badly put together, a a law that struggles to find its way and leaves a person and their family with a cruel and unnecessary end.
We occupied a hospital room for several days when so many sick people would have needed it.
That was not his wish, why so many inconsistencies? Could we have done something else to validate his request more quickly? Couldn’t one grant validity to a lucidly expressed verbal request? Could we have made a recording with Dr. Nguyen during our visit to her office and another telephone recording during her call? Could these possible solutions be taken into consideration to avoid a repetition of a situation similar to ours?
It seems inconceivable that a society as open and advanced as that of Quebec could allow such paradoxes in 2023. We must be lucid, to decide in full knowledge of the facts but… quickly!
Ladies and gentlemen, decision-makers from all walks of life affected by this still precarious law which prevents access to a clearly formulated wish, a law which hinders the dignity of human beings, I ask you to speed up your thoughts and modify access to medical assistance in dying so that no one becomes a cruel prisoner of their body if they no longer want it!