Sarah is immensely grateful that her father-in-law had the option of medical assistance in dying (MAID) available to him when he was admitted to palliative care earlier this year.
Living with terminal cancer and suffering consistent blood loss in his final days, her father-in-law had simply had enough. He made his wishes crystal clear — he wanted to end his life peacefully with the help of a doctor — and his wishes were eventually honoured.
It’s what happened in between the initial request and the provision of assistance in dying, though, that prompted Sarah to send a stern, but respectful, letter to the federal government.
The Ontario woman, who asked that her real name not be used in order to protect her family’s privacy, wants the country’s assisted dying rules to be amended so that people in her father-in-law’s situation won’t have to suffer for days or weeks waiting, like he did, for the relief they desperately seek.
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Under the rules laid out in Bill C-14, the federal assisted dying law, the patient must consent to MAID right before life-ending treatment is provided. This places a heavy burden on patients, especially those who are terminally ill, who want the choice of MAID, but who require strong medication in order to manage their symptoms.
In addition, Bill C-14 requires that patients wait 10 full days after they make a formal request for MAID before they can actually receive a peaceful death. (The waiting period can be waived when the patient is at imminent risk of dying or losing capacity, but this exception isn’t necessarily being used to help patients who may need to forego pain relief in order to maintain capacity.) This was too long a wait for Sarah’s father-in-law, she wrote in her letter to federal Justice Minister Jody Wilson-Raybould — he should not have been made to suffer more in order to put an end to his own suffering.
Federal Justice Minister Jody Wilson-Raybould
Sarah has been kind enough to allow us to publish her letter, which is located below. It provides valuable insight into the unintended consequences that have emerged as a result of some of the safeguards in the law.
This isn’t to say that Bill C-14’s safeguards are wholly misguided. Rather, Sarah’s reflections offer clues on how Canada’s assisted dying rules could be tweaked to ensure that patients and their families aren’t subjected to unnecessary pain, suffering and trauma during what is already a tremendously difficult time in their lives.
July 10, 2017
To: The Honourable Jody Wilson-Raybould
Minister of Justice and Attorney General of Canada
284 Wellington Street
Ottawa, Ontario K1A 0H8
RE: Medical Assistance in Dying, Bill C-14 as assented to on June 17, 2016
Dear Minister Wilson-Raybould,
In May 2017, my father-in-law, who was terminally ill with advanced colon cancer, died with medical assistance in a hospital. I am grateful that he had this option, as was he. He was a man who knew his own mind and once he made a decision, it was a final decision. For months before he knew he would qualify for this option, he would tell family and friends that he just wanted a way to end his life with dignity and without pain.
After being admitted as a palliative patient and dealing with extreme daily blood loss, a physician heard him wishing out loud and informed him he would likely qualify for Medical Assistance in Dying (MAID) under the new legislation. He was relieved and “happy” to know about this option, and the hospital social worker came to visit him to discuss the process as required by law. I have a great-grandmother who died of ALS and there is the very real possibility that someday I, or another family member close to me, will reach out to this option when the time comes. With that in mind, I did have some concerns with the current legislated process that I feel I must share with the hope that future versions of this legislation may be improved.
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The main issue I had with the legislation is the mandatory reflection period of 10 days. While I understood the benefit of a time to reflect on the decision, the time frame is too long. It was too long for my father-in-law, who wanted to avail himself of the option immediately, and it was too long for the family to sit with him and basically wait for his day to die. It is my strong belief that 10 days of nothing but waiting is much too stressful and too difficult for everyone involved.
Every day, my spouse and I were at the hospital twice a day to spend time with my father-in-law and to take his mind off the fact that he had nothing else to do, but wait. His impatience was made clear to us verbally on several occasions, but none more plainly than on the day he finally got his wish. As the doctor was all set up and ready to start, he asked my father-in-law to let him know when he was ready. The immediate answer was “Now” in a voice that clearly implied he had waited long enough and he didn’t want to wait another second. As he indicated to everyone, he had family waiting for him wherever he was going next. He was predeceased by two wives and several siblings.
I am well aware of the clause that allows the 10 days to be shortened in the event that death is imminent or there is evidence that cognitive ability is waning and there is a concern the patient may not be able to give verbal consent. Logically then, it would make sense that if the patient is of sound mind, which has been proven by two witnesses, and the patient is quite clear about his or her wish not to wait the 10 days, there should be some flexibility to allow for a shorter reflection period, since there is no doubt about the patient’s frame of mind.
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My father-in-law was so adamant that he was just “done” and ready to move on, that he also accepted that his regular blood loss might cause a cardiac event, thereby ending his life naturally. He was listed as a “do not resuscitate” and he had refused any further blood transfusions, which were only temporary anyway. However, in the first few days of our 10-day wait, he was regularly asked whether or not he wanted a blood transfusion. We all found this quite frustrating, and my spouse and I finally asked why this was continually offered to him when he had very clearly refused it. We were told that the concern was that he manage to stay alive and cognitively aware throughout the 10 days in order to make it to the final date. The need to keep him alive and sharp until the 10th day was ridiculous when there is clearly a clause in the legislation to allow the date to be moved up if the hospital had concerns of either imminent death or cognitive impairment. And if it had been in his power to go before the final date, we all would have accepted that.
I can understand a three-day period of reflection, a five-day period of reflection, or even a full 10 days if that is what the patient wishes. But to make 10 days mandatory when regulated health professionals have determined the patient qualifies, witnesses have confirmed the patient’s state of mind, the family is supportive, and the patient is ready, it should be the patient that determines how long the reflection period will be.
I spoke with the hospital social worker on the date of the MAID and she asked me for feedback. I shared my feelings on the 10-day process with her and she did tell me that this has been an issue also identified by others who have made use of the legislation.
I ask that this be considered for the sake of other families and their loved ones for whom this legislation was intended.
Dying With Dignity Canada thanks Sarah for graciously allowing us to share her incredible letter.