Liana Brittain: I went to an international end-of-life conference. This is what I learned.

Just four months after her husband, Paul, accessed his right to a peaceful death, Liana Brittain found herself speaking alongside doctors and giants of the movement at an international conference on end-of-life issues. In this blog post, she provides a recap of the event and talks about the lessons she learned along the way.

Life can be strange and wonderful. I now know how Alice must have felt when she stepped through the looking glass into Wonderland. Four months ago, all I knew was that the Canadian government had passed Bill C-14 at the urging of the Supreme Court of Canada. As a result, my husband could choose medical assistance in dying (MAID) and die peacefully on his own terms. Walking into the Second International Conference on End of Life Law, Ethics, Policy and Practice (ICEL2) in Halifax, Nova Scotia, was to be my Wonderland experience.

It was exciting to be asked to speak at the conference as part of a panel from the Canadian Maritime provinces. I was overwhelmed by the enormity of the responsibility and task of speaking to experts in a variety of fields related to end-of-life choices. However, that was all outweighed by the opportunity to represent patients and families across Canada through the eyes and experiences of my recently departed husband and our family. It was my part in honouring the request Paul had made just before he died: to use his name and story to educate others about MAID as an end-of-life choice. To better understand the history and what was happening across Canada, I read Sandra Martin’s book, A Good Death: Making the Most of Our End of Life Choices. It proved to be a wealth of information and, as I looked at the conference program, I began to see the names of pioneers in this movement and identify topics and issues that were of specific interest to me.

Off to Halifax

Dr. Matt Kutcher and I were going to be representing the MAID experience on Prince Edward Island, so we travelled to Halifax together. We had already done two presentations to doctors, resident doctors and their mentors on Prince Edward Island, where we learned that we worked well together. At ICEL2, we were looking forward to the opportunity to speak to a wider audience. Being on the panel with other doctors from Nova Scotia would also help us get a bigger picture of what's occurring on the East Coast. We looked forward to meeting others interested in this field and learning more about what’s happening all over the world.

Retired senator James Cowan, Dr. Mona Gupta, and leading lawyer Joseph Arvay kicked off the conference with their session, "The Story of Law Reform in Canada."

Wednesday evening, Dr. Kutcher and I headed over to the Halifax Central Library for the opening of the conference. Dr. Mona Gupta, lawyer Joseph Arvay and retired Canadian Senator James Cowan delivered a one-hour presentation on "The Story of Law Reform in Canada." To me, here were two of the giants in my personal story. The first, James Cowan, sat on the committee that made patient-centred recommendations for the assisted dying law, so it would more closely reflect the Supreme Court's decision in the Carter v. Canada case. Of unique interest to me was the committee’s recommendation to allow advance requests, which the government chose not to include in the final law. It’s one of several battles we’re now waging in our efforts to have the law expanded. The second, Joseph Arvay, is the lawyer who successfully argued the Carter v. Canada case all the way to the Supreme Court. Because of his success, the government was required to create Bill C-14, permitting MAID. This allowed my husband, Paul, to have a peaceful death, and for that, I will be eternally grateful. The mood at the presentation was serious and thoughtful. There were opposing points of view raised and discussed after the presentation, but in true Canadian style, it was done politely and harmoniously despite very sensitive and opposing perspectives. It was an amazing way to start my new education about end-of-life choices!

Day one

Thursday began very early, for someone who’s physically handicapped and needs additional time to get up and get going. The first major address involved an international panel of four experts speaking about end-of-life decisions and care around the world. I learned so much. Bregje Onwuteaka-Philipsen a professor from Amsterdam, spoke about their long history of doctor-assisted deaths and their 20 years of research and experience in this field. Luc Deliens a professor from Ghent and Brussels in Belgium, talked about Belgium’s 15 years of experience with doctor-assisted dying, palliative sedation and their 20 years of research. Linda Ganzini, a professor from Oregon, spoke about that state’s Death With Dignity Act. She looked back on Oregon’s past 20 years of experience and touched on other states in America that have also created end-of-life procedures that are either doctor- or self-administered. Dr. James Downar, a critical and palliative care physician from Toronto, addressed Canada’s experiences over the past year since Bill C-14 was enacted. Lindy Willmot, a professor in Queensland, Australia, spoke about the history and ongoing efforts to achieve medical assistance in dying in Australia.

I learned that in all countries that offer assisted dying, only a small portion of the population — about four per cent — choose this as their end-of-life option. In Belgium and the Netherlands, most procedures are done in the patient’s home, while in Canada most are done in a hospital or institutional setting. Although Paul and I were in a remote rural location on Prince Edward Island, his end-of-life procedure was done at home, which reflects about 15 per cent of the Canadian MAID occurrences. It was also evident that after 20 years of research in multiple countries, there is no slippery slope phenomena when it comes to MAID availability and over application to people in vulnerable populations.

Liana and Teddy sitting at the presentation table just before the start of their session on MAID in Nova Scotia and Prince Edward Island. For Liana, it was so helpful to have Teddy, who contains her husband Paul's ashes, right next to her. "It gave me strength," she later said.

Later in the morning, our panel discussion, "Medical Assistance in Dying (MAID) – Early Experiences and Practical Considerations in Nova Scotia and PEI," was offered as one of seven concurrent information sessions. Dr. Gordon Gubitz, Dr. Lianne Yoshida, Dr. Robyn MacQuarrie, Dr. Tim Holland, Dr. Matt Kutcher and I shared a variety of experiences and concerns about MAID access and delivery in the Maritimes over the past year. Dr. Kutcher presented Paul’s medical case and his experiences as the physician who performed the procedure, and I spoke about Paul’s decisions, my participation as his wife and the attitudes and support of extended family. Teddy, Cub Reporter, sat with me at the presentation table. It was such a comfort to have Paul’s keepsake, containing his ashes, so close at hand. It was as if Paul was right there beside me. Afterward, I was approached by a reporter from the Canadian Press and conducted the first of two interviews: one Thursday and then again on Friday with a photographer. As a result, this issue and Paul’s story have appeared across Canada in many forms of media, including a radio interview done with Evan Soloman over the phone. I was honoured to share Paul’s story and in so doing bring this important message to all the people of Canada. As you can imagine, it was an overwhelming experience, but one I’m very grateful to have had.

Day two

The next day and a half were filled with many interesting keynote addresses and concurrent information sessions. I learned so much about many topics including provisions for rural and remote settings, the grey area between palliative sedation and euthanasia, conversations about CPR at the end of life, medical futility dispute resolutions, the rights and lack thereof for mature minors and the challenges being faced by patients with mental illness who wish to access MAID. These are but a few of the many informative sessions that were offered for participants at the conference.

Teddy waiting for a plenary session to begin. To learn more about Teddy and his significance, click here.

As I went from session to session, my pain level mounted to an unbearable level. I was in agony and felt sick to my stomach. At that point, I was forced to take a break and return to the hotel to lie down. I was using my new rollator/transport chair for the first time. I found it was allowing me to walk significantly farther and longer than I had been able to with my cane, but it didn’t stop the crippling pain and I was so frustrated. Although my mind was racing with excitement at all the amazing things I was experiencing, my body simply betrayed me and gave out. While I re-energized, and got my pain under control, I had a chance to reflect on how all of this was going to impact my life and ultimately my death. I was reminded of a comment Joe Arvay made at the opening session on Wednesday night. He said that there are some days you just think "I can't do this anymore." I feel that way more often than I would like to admit. Fortunately, a good day comes along when I need it most and I am able to move forward one more time. But what happens when those good days no longer make an appearance? What happens when my life no longer has quality, purpose or meaning? I would want to be allowed to die peacefully and on my own terms. I would absolutely choose MAID.

As the conference continued, I had the opportunity to meet and talk to many individuals from all over the world about issues of mutual concern at breaks and meals. I also reconnected with award-winning author Sandra Martin, whom I had met recently. I had a luncheon meeting with Shanaaz Gokool, CEO of Dying With Dignity Canada. I’ve been doing some volunteer work for this amazing group and was excited to have an opportunity to get to know Shanaaz on a very personal level and discuss potential future projects that we might tackle together with her team at DWDC. Her passion and strength are such an inspiration to me.

The Thursday night banquet was another wonderful opportunity to meet people from international communities and discuss our mutual interests and future goals. I also learned how to pace myself better so I could manage my pain more successfully. The conference ended on a high note with a panel presentation of the political issues of current paramount importance: expanding eligibility for MAID to include advance requests, individuals with mental illness as the sole underlying condition and mature minors. There were so many thought-provoking arguments and issues brought forward during the presentation. This session was a very powerful ending to an outstanding conference.

It was announced that there will be a third conference in 2019 to be held in Belgium. As we age and our end-of-life choices become imminent, this type of conference is critical. The sharing of ideas and issues facing us all at the end of life are an important part of the evolution of our collective societies. Sharing what we have learned through our experiences brings humanity together as we face a universal truth – we will all, without exception, die. It’s time to open the conversation and have the courage and strength to talk honestly about death and the choices we face. I hope I will have the opportunity to be an integral part of this discussion as it goes forward. 

Liana Brittain provides dual advocacy for chronic pain and medical assistance in dying. She is also the architect of the Living in Pain Successfully program. She has written about her chronic pain in her book, A Gentle Warrior.

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