Mark and Jacqueline’s story: The support team
Personal Stories | February 19, 2021 | Sarah Dobec
In the fall of 2020, one of our board members, Dr Jonathan Reggler, shared an article from Powell River Living Magazine with Dying With Dignity Canada. It was a story about Mark Huddleston, a gentleman from British Columbia who chose medical assistance in dying (MAID) and his very inclusive, outdoor end-of-life ceremony. We were blown away by the story, the community involved and the many opportunities it offered to initiate more conversations about life and death, and help Canadians better understand MAID. We collaborated with several folks featured in the story to create a series of blog posts, we hope people will find inspirational and will share the story far and wide.
Mark Huddleston lived six years past his original diagnosis of prostate cancer. With the support of his co-housing community and his wife Jacqueline, Mark explored many different treatments, both things within Western medicine and alternative therapies. However, in 2020 when his treatments and medications were no longer working, Mark decided it was time to arrange medical assistance in dying (MAID).
Mark’s first assessment was with his primary physician who knew Mark well. Jacqueline remembers it being very straightforward because of their established relationship. They expected the second assessment to be similar but it was completely different. “Dr. Reggler came to get to know Mark. He stayed here for three hours talking to him and asking him about himself,” Jacqueline recounted. Within the first 10 minutes of the assessment, he told Mark, “I’m just going to let you know you’re eligible for this, just to take the edge off, so you’re not nervous or anything. In my opinion, you are eligible for MAID.”
In the middle of the assessment, Mark’s nurses arrived to care for him, so Dr. Reggler took a break. He went for a walk through the forest to the river. When he returned, he said: “You know that beach is an amazing place and you might want to consider having your ceremony there. In a community such as this, I would think people might be interested.” Jacqueline remembers thinking, “You’re right. They are. He intuitively understood who we were, that’s because he took the time to sit with us, and I thought that was very special.”
Dr. Reggler, who prefers to be called by his first name Jonathan, is a family physician in Courtenay, BC on Vancouver Island. He moved to Canada from the UK 17 years ago. In 2016, when MAID became law in Canada, Jonathan and another physician decided that the mid-Vancouver Island area needed a medical assistance in dying program, so they started a MAID practice. They did loads of research and as pioneers in this new practice and law, they wrote themselves a handbook on how to provide MAID. “I’ve always been interested in palliative care and one of the reasons I needed to do this is that one day I might want access to MAID. If I’m going to ask a younger colleague to provide it for me, I felt that I should have been doing it myself, so I did,” Jonathan shared.
Sheena Fraser is a Registered Nurse in Powell River BC. She has worked in many areas of medicine, but her passion is palliative care. “I see myself as an advocate more than anything else. It’s critical to promote the needs of the patient that maybe the patient or even the doctor don’t know. It’s been my whole life, caring for people.”
Sheena became interested in MAID when a patient with end-stage kidney disease asked if she would be her nurse during her MAID provision. “I felt quite honoured. Her ceremony was lovely. She had friends in, they had prayers, candles and they sang.” And she thought, “Yes, this is really what I was meant to do. It gives people the dignity that they deserve, a recognition of a lifetime, and that’s how I got introduced to MAID.”
Jonathan and Sheena were the health care team present at Mark’s MAID provision. They both had very thorough information to share when asked if there is anything about being a MAID provider that the general public should know about.
“We are not allowed to promote MAID but often a patient has already looked into it and has questions,” explains Sheena. “I tell people it’s something they can look into, be assessed for, but you always have the option of saying ‘no’ right up to the last minute. For many people, just knowing MAID is an option they may or may not use, brings a sense of relief.”
“I think it’s important to understand that the law makes the decision to have MAID the patient’s,” Jonathan explains. “My job as part of that decision-making process is to ensure that the patient has all the information that they need to make the decision. To make sure they understand what their condition is, to make sure that they know enough about the other options and further options for treatment. I help them understand what a natural death might look like, what a medically assisted death might look like and explain options such as palliative sedation, a medical aid to stay asleep whilst one dies.”
Jonathan often says to people, “I do not mind which route you choose. It’s not my job to do as much MAID as possible. My job is to make sure that you can choose because you have all the information. You can choose which is the right course for you.”
In their experience, MAID provisions are all different in ceremony but all similar in the peace and relief of suffering that MAID provides.
“MAID brings people together. That’s one of the points about medical assistance in dying, people can come together to be with the person when they die in a way that usually cannot happen, for certain with a natural death. You get this sort of concentration of love, it’s palpable”, Jonathan shared. “I recall a provision I attended in an ICU unit, typically a very clinical and intense space in a hospital. I opened the door and I heard singing. There were a dozen people in the patient’s unit. His son was playing guitar, the patient had his guitar on his chest and the daughter was playing flute.”
“The actual procedure is rather uneventful,” explained Sheena. “People close their eyes, the colour might drain from their face and they might have one last exhale of breath, but that’s it. It’s peaceful, it’s calming, it’s a beautiful send off.”
Jonathan and Sheena both reflect on destigmatizing, reducing fear and creating space for conversation about death and dying. In Sheena’s experience, “Most people haven’t seen death, so MAID has certainly made it a little easier to talk about it. It’s a big taboo in our culture.”
“I think one of the things MAID achieves is to demystify death. One of the wonderful things is the very last thing a person sees is the faces of all the people who love them most,” Jonathan explains. “I think many of us wonder, ‘What difference did I make? Did my life matter?’ For Mark, he learned the answer is yes, it really did because of the incredibly personal and communal celebration that his community planned for him.”