Reflections on an historic Supreme Court decision

"It's unanimous!" my husband Keith yelled from the living room as he scrolled through his cell phone news feed at around 7:30am Pacific time Friday February 6th.

I was eating my breakfast  and suddenly began to cry.  I knew the announcement from the Canadian Supreme Court on the assisted suicide ruling would come first thing  today. I was fully expecting a majority to rule in favour. What I didn't expect  was my reaction.

 I've spent a lot of time pondering that sudden burst of tears today — and my generally weepiness and emotionality that stayed with me all day. 

Lots will be written in the days ahead about the meaning and impact that this historic decision will have on Canadian society. There will be jubilant supporters, ardent  opposition. I could spend all this blog (and many more),  just talking about the medical and legal implications and next steps.  

 I have decided, instead, to focus on the  meaning to me ; about the mark this whole debate had on my life. How it changed me — for the better for the most part, but with a bit of lingering trauma. I will try to explain, if only for my own enlightenment,  in this rather long blog post, why this decision suddenly made me burst into tears and has made me a wreck all day.  I said on my Facebook page this morning : "I think I have PTSD from my five years in the early 1990s writing intensively about this topic, meeting so many individuals struggling with the issues, and witnessing so many deaths." But that is too glib. It is more nuanced than that.

It was August 1992 when a fax came through my machine, in now our master bedroom,  then my home office, which was the newly formed "Vancouver Island Bureau" of the Vancouver Sun. I was the sole reporter.  I was 34, a new mom with a 16-month old baby, newly back to work after maternity leave.

The fax was introducing me to Sue Rodriguez, the amazing Vancouver Island woman who set this whole debate in motion in Canada. It was  telling me her of her ALS and her quest to overturn the laws against assisted suicide, asking me if I wanted the first media interview. Of course I did. It was a David and Goliath story, a young mother with a devastating terminal illness taking on the laws of the land.  I don't have any conceit that I "broke" the national story about Sue.  I was just lucky that she chose me as the first journalist to whom she offered to share her compelling tale. Many were to follow.

I went out to her Saanich home a short while later, sat in the dappled sun sipping lemonade in her  backyard,  talking about her diagnosis, the bleak path before her, her desire to have a choice in the time and manner in which she left this world. She was still relatively well then, just 42 years old, mother of an 8-year-old son. She was still  talking and walking without too much outward evidence of the insidious disease. She was witty, charming, smart and convincing. I completely identified with her plight. I could see myself,  eight years later, with an 8-year-old child and a terminal diagnosis. I did not know what my ultimate choice would be — whether to exit early or stay to the bitter end — but I knew for certain I would want to be the one making that choice. No one else.

The issue was to become the defining focus of my working life for the next five years. I followed Sue's petition all the way to the Supreme Court, first for the Vancouver Sun and then as an occasional  stringer for the Toronto Star. I spent a fair amount of  time with Sue, taking her on outings to Sidney, BC, growing to truly like her as a friend and admire her as strong female icon of societal change.

But writing in a daily newspaper about Sue' s choice, and the impact on our society, was frustrating in its limitations. I needed more time, more space, more context, more colour and nuance. I submitted an application to the 1993 Atkinson Fellowship in Public Policy, a year-long, well-compensated research fellowship. I proposed to examine, in depth, medical decisions at the end of life. I started working on the proposal  when I did not yet know I was pregnant with our second child. I learned I was selected to carry out the research when our second daughter was just four months of age. Suddenly, our family of four, two children under three,  was heading to the Netherlands, England, Germany and the US to examine the approach to the issues in those countries. The results of that year-long research project ran as a week-long series, Dying For Leadership, in the Toronto Star in the fall of 1994. Then even more research and interviews built on that series and turned into a two-year book project, published in the fall of 1996 by Knopf  as  Timely Death: Considering Our Last Rights.

"I really don't think you should be doing this at this stage in your life," my mother told me at the time. "You are a young mother, you should be focusing on your kids — on life! ­— not on death," she said.  Her words, delivered in kindness, care and honesty, had a great impact on me. But I felt compelled to continue.  I would be lying if I said I had no guilt nor doubt about what I was devoting my time and energy to. I had times of agony over what I was doing. Fortunately Keith,  my mother , mother-in-law, and a series of very loving nannies, looked after our two precious girls. But those years I will never get back with them. Now wonderful women in their early 20s, my two daughters have assured me they felt no neglect. Today, when the Supreme Court announcement was made, both deliberately contacted me, God bless them,  to tell me how proud they are of what I did so long ago. But there were moments, over the years, when I had supreme mother's  guilt.

I interviewed close to 100 people in five countries, read countless documents, did extensive literature searches in medical and legal journals. My brain, in those years, was like an overloaded canoe, the gunnels lapping water, about to capsize. I apologise to anyone I ever talked to or met (or especially re-met) socially between 1993 and 1996. I was incapable in social situations of remembering faces and conversations. I was incapable of light banter. My brain was too full of the stories of the dying and their loved ones.

Oh, but those dying individuals and their partners stay with me to this day, still bring tears to my eyes: Doug Miller and Lousie Normandin-Miller, Bill and Alice Davies, Rodney Mitchell and Ron Paul,  Brian and Pat Burkell, Gayle and Ray Stelter, Jeanne and Jan Verheijen, Jan Smit and Helene Sweirstra-Smit, Cynthia Verbonac and Tom Sigurdson  — and so, so many more.  Some I never wrote about linger the most : the 50-year-old man without any family at all, dying of metastatic lung cancer, cachectic body riddled with oozing third-degree  bed sores, bones so fragile they broke if he was turned. He had contacted me from his hospice bed, wanting to tell me his story  after I'd placed a national personal in the Globe and Mail. By the time I visited him, sat at his bedside for an hour, his competency to consent to sharing his story was  iffy, and the staff — his only family — so hostile to my presence , that I left him out. But his meaningless suffering — to him — was among the most painful I witnessed.

At times I felt like a vulture, feeding on the stories of the dying. I remember documenting the death by AIDS of Rodney Mitchell, whose story became the final chapter of my book.  One day, as he was near the end, I had come out to his and Ron's gorgeous rural property on Vancouver Island, from which the duo had run for many years a very successful specialized garden nursery.  I was writing in my notepad all his latest distressing symptoms of decline: the hallucinations, sores, incontinence,  body wasting.  I began to feel  so repugnant in my journalistic notation that I could not continue. I began to cry. It was a dying man and his partner who then comforted me. "It's okay , we want you to be here!" Rodney and Ron said. "It is so important that you are here." ( I am crying as I write this. Twenty years later, that moment still has the power to unhinge me.)

Not everyone reassured me my presence was wanted.  Gayle Stelter, dying of breast cancer,  sought me out, wanting me to tell her story. We had a lot of telephone calls at first, but when I visited her at her Vancouver hospital bed, her two young adult children were aghast that I had come.  She was failing, too weak to verbally command her desires. The children's hostility towards me hung in the air like an ice-cold frisson. I knew that, at its root, was their terrible grief of losing their mother much too soon, and their difficulty, knowing how much she loved them, to reconcile that love with the fact she wanted to go on her own terms and her own time and wanted me to share that message to the world.  Gail clutched my hand, not allowing me to go, while the children glared at me to leave.

 Gayle was a wonderful, unpublished writer. I used her diary entries throughout the chapter that included her story to capture her spirited essence and her desire for autonomy and choice. One of the most meaningful responses to my book after it was published was a handwritten letter I received from her daughter, which I have kept to this day: "I was very, very angry  when I knew my mother was speaking to you. I did not understand why she invited you into our lives, into her hospital room.... but now that I read your book, and her words in it,  I want to thank you for honouring her life in such a way."

Another of the most meaningful letters I received was from my own mother, who wrote me after reading the entire book in manuscript form, which I have also kept: "I did not think at first that you should focus on this topic. But I am now so proud of you that you have written such a compassionate, sensitive and wise book."

Today's Supreme Court decision does not mean that death will suddenly become easy in Canada. Death will never be easy. But I do feel  today's decision will make it easier to TALK openly about death and our desires for the end of life. It will be easier to talk about the inevitability of death for ALL of us and to have us stop pretending that death can be beaten; to have us all begin to accept it as the natural end of a good life. The reality is that most of us will never need assisted suicide to leave this world. But for those tiny minority who do, it will now become possible. As I saw in the Netherlands, having a choice at the end of life will actually enable a flowering of palliative care, not its diminishment. Because when you allow choice in death, you allow all aspects of choice, even the choice to stick around. In all, this is a huge advance in human rights.

In our  six weeks in the Netherlands in the spring of 1994, at the time the only jurisdiction to allow choice in death, I had many profound and moving moments. All of the Dutch doctors I spoke to told me that while virtually all of their terminally ill patients had talked to them about euthanasia or assisted suicide — even those who were fundamentally against it —  only a tiny fraction ultimately ended up choosing it.  Dutch family doctor, Dr. Gerritt Kimsma he told me that discussing choices at the end of life removes the fear of death and reassures the patient that the doctor will be there for them, to keep them comfortable,  no matter what those final stages bring.  Kimsma said: "The real value comes not from the act itself, but from the ability of the doctor and the patient to speak openly about it." That, more than anything, has stayed with me all these years.

My book did not sell well.  Twenty years ago no one wanted to read about choices in death.  I did win a national  creative non-fiction award, the Edna Staebler Award,  for it in 1997. That gave the book a little blip in national coverage for my five years' of effort. For two weeks in February of 1997 I was on the best seller list in Edmonton, of all places. (My black-humoured journalist friends joked that in February, in Edmonton, everyone's thoughts turn to suicide.) I was contacted by media often in the first years to be a spokesperson on right to die issues.  But after a while I turned them down. I felt as a journalist I had said all I wanted or needed to say on the subject.  I felt it was time to move on. I felt it was time to focus on life again.

But, from the time I finished the book,  I did live life differently. I  felt like I had come through a terminal illness myself, but survived. But I was forever altered. I became more consciously present.  I decided to stay at home and only work when my girls were in school.  I became incredibly grateful for my life, my family, my girls. I took nothing for granted. My life was enriched by my close examination of death and I do not regret a moment of it.

Somewhat ironically, I have been working in the last month with the  Shared Care Committee, a joint committee of Doctors of BC and government, on their end of life initiative. I've been working with the Fraser Northwest Division of Family Practice to help tell its stories about Advance Care Planning. ACP is a process of decision-making not related to assisted suicide to have a better end of life. There is so much we can do to give ourselves more peaceful ends without having to choose assisted suicide. But this ruling will make that discussion easier, too.

Today was a landmark decision, years in the making. And when the announcement came,  20 years after I had devoted so much of my life to explaining the issues, I burst into tears.