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, everyone will recognize the benefits he was able to bring to each person he met.
Last January 11, overwhelmed with pain, he was diagnosed with pancreatic cancer with pulmonary embolisms. She was offered an intervention to reduce the pain (celiac block), which was performed on January 24. Although the operation 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.
Back home, three days later, we were offered a follow-up in an outpatient palliative care clinic and in oncology as well.
I must emphasize the quality of the staff’s 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 palliative care outpatient appointment took place on February 3 with Dr.D Olivia Nguyen. Her kindness, compassion and concern touched us deeply. Also, his relief strategy helped us a lot. A soothing balm had just landed on a burn.
PHOTO PROVIDED BY LINE BEAUCAGE
Line Beaucage and her lover
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.
The DD Nguyen assured us that his condition allowed it, that his 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, the DD 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 telephone follow-up with the DD Nguyen to check 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 repeated to me: “I don’t want to suffer, I don’t want to die while dragging on or gradually 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 phone call with the DD Nguyen, he had 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.
When we arrived at the hospital in Saint-Eustache, we repeated his wish before he was unconscious. He acquiesced between two bouts of nausea/vomiting, in the presence of the reception staff. No one took this into account and we all know why…: this is not the procedure provided for by law!
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 progressive 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 we know that so many sick people would have needed it.
That was not his wish, why so many inconsistencies? Could we have acted differently to validate his request more quickly? Could we not grant validity to a verbal request expressed in all lucidity? Could we have made a recording with the DD Nguyen during our visit to his office and another phone recording during his call? Could these possible solutions be taken into consideration to prevent a situation similar to ours from repeating itself?
It seems inconceivable that a society as open and advanced as that of Quebec could allow such paradoxes in 2023. We have to be lucid, to decide with 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 finds themselves a cruel prisoner of their body if they no longer wish it!