I have, in the course of my life, had the privilege of accompanying three people until their last rest. I say privilege, because it is. Despite the pain, the suffering and the bereavement that this entails, there is something profoundly human and beautiful in letting go of a life. These are moments of great intimacy which require, on both sides, great trust, a great deal of love, compassion and resilience.
Without wanting to go into the details of what afflicted my mom, I must express to you my outrage at the way my mom and our family were treated at St. Mary’s Hospital Center, especially on the eighth floor of this establishment.
From the moment it is determined that end-of-life care is required, we agree that we are under an obligation to ensure that the person in this situation is in urgent need of receiving continuous comfort, if this is the wish of the person concerned, as well as that of his relatives. For my mother, it was always clearly expressed that there would be no relentless treatment and that continuous sedation was the only option. However, this was not the case at all and on many occasions we wanted to discuss with the doctor in charge of his file to make sure that this was well understood.
The doctor in question had prescribed medication on request only, and the nursing staff could not change anything to meet our request, which led to an unbearable situation for her and for us.
First, mom should have been transferred to the palliative care unit of the hospital, which we were denied. At the beginning of the treatments, we were in a tiny room for two people where we had trouble seating only one person in the room with her, and the other patient had COVID-19.
It was only the next day that we insisted on having a single room, in order to be able to live these last moments in peace. This is one of the rights provided for in the law: “In addition, health network establishments are required to offer anyone at the end of their life or eligible for medical assistance in dying a room for themselves alone. a few days before his death1. »
We finally got the room the next day. It was not cleaned before we took possession of it. It was filthy and the floor was strewn with soiled medical equipment, including an empty syringe in the washroom.
Referring to law S-32.0001, Act respecting end-of-life care, my mother met the criteria and would have been entitled to receive palliative care of continuous sedation, which we were refused, or which was not done, since we were never able to meet her attending physician. We agree that an end of life is an emergency. Seeing my mother suffer and not being able to succeed, we called on a friend of the family who is a doctor and former director of palliative care at McGill University. She moved to come and see what was going on. My mother was not receiving the dose of sedation required for her comfort. Without prescribing privileges at St. Mary’s, our doctor friend asked to meet with the attending or on-call physician, but no one ever showed up. She therefore gave her instructions to the nursing staff, but the request was not heard.
Time passes, another night…
The person who is at my mother’s bedside with me feels unwell. I get up, go to the nurses station to ask for help and the nurse at the station tells me that she can’t do anything for her and that I have to take my friend down to the emergency room. I am indignant: “Excuse me? My mother is dying and I have to leave her to bring my friend to the emergency room? I lose my temper a bit. It was at this precise moment that a standoff began: threats to evict me, intimidating remarks, accusations of racism, accusation of wanting to contaminate her with COVID… at a certain point, there were four of them in front of me, like a shield.
Distraught, I decide to shut up to avoid the worst, feeling held hostage in a horror movie. Fortunately, my friend’s discomfort passed. Calm returns and we fall asleep.
In the early morning, my mother is at her worst. No one came to give him any medication that night. No one ! The situation is critical. The nurse from the day before comes in to administer the injections and tells me that if my mother needed her doses, it was up to me to ask for them. Such was the protocol! A doctor shows up a little later. We try, another time, to explain to her our desire that she have access to continuous sedation, but she does not transmit our request and the whole thing falls into limbo.
Another difficult day is ahead of us. Our doctor friend makes a follow-up call to give her recommendations to the head nurse, as doctors are non-existent. The prognosis is a few hours. Why let her suffer unnecessarily? I am told that a doctor must come and see the situation before changing the protocol.
In the evening, a young doctor enters the room. I ask him for a private interview. And this is where I raise my voice and become very insistent. With few words, she leaves and tells me that she will notify the chief duty doctor. The latter arrives a few hours later, at the end of the evening. He tells me that he can kick me out by telling me that I have broken the bond of trust with the hospital staff! I reiterate my request for continuous sedation care and I try to explain my experience, but nothing helps. It’s closed about me.
It was after this interview, however, that my mother finally received the care to which she was entitled. We had just lost four precious days fighting. She died a few hours later peacefully. I left the hospital in the early morning after signing the necessary formalities. I was drained, sad, bitter and beside myself. All I wanted was to leave these cursed places. I had just been deprived of an important, precious, serene and harmonious moment with the woman of my life. An exceptional woman! The wife of the man who was the father of Quebec health insurance! What a shame ! Such a waste. She entered the hospital under her maiden name so as not to have any special status and to receive universal care. She was a discreet woman with great class. For her, and contrary to what she would have liked, because she always avoided controversy, I could not help but turn into a pit bull so that her rights would be respected and to protect her.
A serious soul-searching
If I talk about it today, I don’t do it for her or for me. Our story is over. All we have to do is digest this horror that we have experienced and heal our wounds. But I can’t gloss over that, because I believe this establishment has some serious soul-searching to do. If I speak, it is for all those who are flouted, who have no right to speak in an intimidating environment where organized chaos reigns. I speak for those who have no help and who suffer with impunity a service worthy of a developing country. You know, I understand very well the issues of lack of resources, staff fatigue in hospitals… But, on the eighth floor of St. Mary’s Hospital Center, it is not the lack of resources that is in question, but rather the lack of compassion and respect for fundamental rights. The eighth floor of St. Mary’s is a place where humanity and dignity have been forgotten.
Two other doctors, family friends, came to my mother’s bedside: one is a neurosurgeon at Sainte-Justine Hospital. He was the one who assessed my mom before her hospitalization. The other is Mom’s best friend, retired head of the nuclear medicine department at Maisonneuve-Rosemont Hospital. Both were outraged, outraged and very angry at the neglect my mother suffered and the poor care she received.
I really hope that my case is isolated, because if my story is banal, we, as a society, have an important questioning to do so that our practices join our values and our ethics. I can affirm that at this moment, I am infinitely ashamed of my health system and that I am very worried for the future and for my fellow citizens. My father could never have imagined one day that his wife would find herself in such a situation, he who founded health insurance for all, with the cornerstone and foundation of respect and the dignity of individuals in their needs, and this, under the Charter of Human Rights and Freedoms!