Love, grief and assisted dying

Medical assistance in dying, informally referred to as MAID, was the official cause of death recorded on my mum’s death certificate. The second line gives the reason for Mum’s decision to “die with dignity”: leiomyosarcoma, a rare and aggressive form of cancer.

My story of her death is more nuanced, less abrupt than those lines. It is written within the heartbeats of grief, illuminated with the colours and hues of shared laughter and loss.

Death is not an easy topic for reflection and writing, and Mum’s death and its presence in my everyday conversations is complicated by ongoing legal and ethical debates in the UK. My private moments and memories cross over with political discourses.

Mum’s death happened in Canada, where MAID is legal. I live and grieve in Scotland, where such practices that facilitate death are illegal. These facts are integral to the experiences I witnessed and the bewilderment that I felt. I called it ‘surreality’. I know this is not a real word, yet it positioned me within two equal dimensions – the surreal and the real.

In the UK, the debate related to assistance with dying is presently theoretical. In theory: concerns on the side of ‘against’ are raised. In theory: wishes and ‘support’ on behalf of loved ones are expressed. In theory: morals and ethics are identified. It is in theory because the debate exists in its own in-between-ness.

Requesting MAID

Since 2016, MAID has been legal in Canada. It includes systems of oversight, diagnostic and prognostic appraisal, and phases for personal and collective contemplation.

For some people, the confirmation of date and time of death departs from in theory and enters mainstream reality.

It was Mum’s choice to request and pursue MAID, a choice the immediate family respected and supported. She spoke of this in the summer before she died – she wanted to know our thoughts.

I had lived in Scotland since the passing of the Canadian MAID legislation, and in California during the debates that preceded it. I was not up to speed with these developments. In truth, I was also not aware of the UK and Scottish debates on assisted dying; I had no emotional connection to the political debate until it became personal. In another country.

Rather embarrassingly, when she first mentioned MAID, I immediately pictured someone hired to do some tidying up. Mum’s health was declining. Was she considering some external cleaning support? Wrong maid.

As a theoretical consideration, of course I was in support. It enabled the possibility of choice – for how long to continue down the path of increased pain and decreased physical capacity. It was legal and monitored. Her death would be supported by the hand of a professional, not brought about by her own direct hand.

The passage of time and circumstance can transform discussions and decisions. Would my support shift when in theory was no longer theoretical?

It did not.

Waiting and wondering

I have jumped ahead and back again with this story. My mum used to do that. She would flip to the end of the book to suspend any anxiety of waiting to learn how the story concluded. There is irony that in her own way she manifested the close to her own life story the way she consumed fiction – with the knowledge of its ending. 

During December 2020, amid strict Covid protocols, Mum started to experience increasing abdominal discomforts and related symptoms. Mum did not ‘do’ sick. She did not have the patience to lie about feeling poorly.

My sibling and I have learned from her example; we too are rarely sick. As children, if we were not well enough to go to school, we were not well enough to watch television at home. If we were sick, we went to bed. We slept. We got better. We carried on.

But in 2020, Mum could not rest herself out of the pain. An initial visit to a walk-in medical clinic was followed by multiple A&E trips. Tests, scans, and uncertainties, until the eventual determination that whatever was going on needed to be addressed surgically.

There was no diagnosis at that time. Only reports and experiences of fatigue, loss of appetite, abdominal and leg swelling, impairment of bowel function, and an inability to tolerate sitting for prolonged periods.

Confirmation of cancer

All the while, I was in Scotland, worrying. The pandemic meant the Canadian borders were closed to incoming flights from the UK. Tearful calls to the Canadian Consulate were made – in theory, when the borders reopened, would I be permitted to travel to my home country, when travel of any form was discouraged? In reality, I managed to finally get to Canada in the early days of 2021.

Mum may not have ‘done’ sick. Nevertheless, she was very sick when I was eventually able to see her following my government-mandated two-week period of quarantine.

In January 2021, with her family close but far, due to hospital Covid protocols (meaning we were able to wait together but not see her at the hospital), a 20 cm tumour was removed during a complicated surgery. It occupied more abdominal real estate than either my sibling or I at our own births. Mum had ‘delivered’ a cancerous mass, shortly thereafter confirmed by pathologists to be leiomyosarcoma. As this cancer originates in smooth muscle, her reproductive system was also removed preventatively.

It took less than six months for those fatal cancer cells to gather force elsewhere. Scientific evidence on treatment protocols have not generated any ‘gold standard’ approaches. For us, it was going to be a try-and-see reality. And for me, I wanted the ‘seeing’ to be in person, so I took my second trip back to Canada in late summer that year.

The chemotherapy caused more disruption than contribution to her health. After several cycles, the professionals with their testing and scanning confirmed that it was ineffectual against this aggressive cancer. Before anyone formally conveyed this news to her, I believe Mum knew that the medical interventions were not working.

The lines and edges between theory and reality were blurring and we lived within those lines after that.

Unlike Mum, I tend not to flip to the final pages to know the end before I experience the story. Despite this, I was aware that the ending for Mum was approaching.

Time inches closer

With MAID, there are multiple and separate medical assessments that need to be conducted, written and reviewed. After her birthday in the autumn – her final one – we were informed that this significant administrative step had been completed.

With her paperwork approved, MAID could be legally enacted should she wish. There were no requirements and no timeframe.

Suddenly, MAID in theory was inching towards reality. It was not the process that felt complicated, it was the timing. The paperwork meant that my mum was going to die. Soon. That is a complicated timeframe to reconcile, soon.

A single phone call to the doctor would start the end. When would that be?

When is it time? How do we know? How would Mum know? She was not always the most decisive person. She was often an “I’ll have what she’s having” type of restaurant-goer.

Rather selfishly, I wondered about what it would mean for me. Proceed as normal until it is not?

For a few months, with me back in Scotland, regular virtual conversations with Mum pleasantly continued. The impression left by the calls was that all was normal.

In late November, that impression shifted. I saw her subtly try to shift her body into more comfortable positions as we video chatted. The last time I saw that seated discomfort was the year before, as the tumour grew silently and quickly.

Then she said the phrase that she had been regularly deflecting when it came from me. “I would love to see you,” she said. She did not mean via computer screen. The time had come.

Within the week of returning once again to my hometown, coming into the house after a frosty morning run, the in theory became in reality. While we were out, the phone call had been made.

Reflections

Many of my own life chapters became evident during this period. As part of my doctoral studies, I became interested in the technological advancements that facilitate and prolong life and the questions that arise when considering whether these support living. Central in all my work is a curiosity into how everyday life, and the stories told of it, is constructed amid transitions. Beginnings and endings, life and living, death and dying – the latter being a new inclusion.

My colleagues were aware that my mum was dying and that I would need to return to Canada at some point at short notice. I did not use the language of ‘unwell’ when I told students I would not deliver the final lectures of the semester. Yes, Mum was unwell. The well-meaning hopes for improved health would not be realised; I decided to offer accuracy of the situation. I was flying back to be present for Mum’s death, not the possibility of her death. There was certainty in that reality. I did not tell my friends, students and colleagues the backdrop for this certainty.

I realise now that my intentional omission of significant contextual details at the time of that departure was done based on (il)legal standing and my uncertainty of how I or my family might be perceived. Doing so relegated parts of our life story – inclusive of death – into the shadows.

There has since been a deepening of conversations and reflections when I have brought this story into the light, in Canada and the UK. People have held me and the assisted dying dimension of my stories gently. They have expressed their own questioning in response to my reflections.

Assisted dying does not seem to be part of the collective consciousness in the UK. Perhaps it is not really in Canada either, unless or until death comes knocking.

Despite the generosity expressed in response to my sharing, I often feel adrift because the story I live with exists across the ocean in different contexts. It happened there and I try to make sense of it here.

I wonder how it can be that the ‘colonies’ (Canada) have approved legal decisions about autonomy, decision-making and the end of life, while the ‘coloniser’ (Britain) remains opposed. Why is this?

As a citizen there and a resident here, what values, questions, practices or fears live and die within the legal and health sectors? Where is power held and who is afforded choice?

To me, these questions are real and theoretical. I ponder them critically and cautiously, on professional and personal levels, as an outside observer with inside experiences. The third alliterative ‘p’ here is political, an additional narrative perspective. It is important for me to recognise that all of these levels and layers are part of the stories I tell and the stories I live by and the moments I remember.

Preparing for death

The date and time for my mum’s death was written on the calendar in the same manner as she noted dental or massage appointments. The call was made; death had been scheduled.

My professional career has been focused on narratives and occupations, the latter being the ‘everydayness’ of activities that contribute to meaning, identity and purpose. No training or experience had prepared me for how to occupy myself for an impending death.

During the days preceding the known time and date, I found myself disoriented by knowledge and uncertainty. The room in which I was sleeping had a clock on the wall that seemed to tick at a volume previously unheard.

We went through things. Drawers, cupboards, clothes, photos, stories. We were making memories while recollecting them because there would be no more shared future. Only the past.

I wondered – which slowly merged into worry – if I was ‘supposed’ to have important conversations with Mum in these final days. About what, I did not know.

Mum was very clear that she did not want a funeral. No memorial. No service. She agreed to an obituary. She wanted people to know she had died, so that they might reach out and connect with us as we continued to live.

At the kitchen table, we obituated. My verb for the collective endeavour of crafting a final narrative, with her input; the abridged version of her life. She offered and rejected. We countered and proposed. In the end the obituary was short and direct. Who and what she loved. How she connected and departed were honoured. She even, eventually, agreed to the inclusion of a photo. She had a beautiful smile. She was beautiful.

The last day

On her final day, Mum arose early, as was always her nature. Perhaps she, too, was uncertain of how this final day of dying and living was to unfold. She began to clean the house, tidying, leaving no trace. In between the bursts of busyness, she would lie down, overpowered by pain. It was as though we were watching a marathon runner in the final miles of the race, beyond the point of exhaustion and powered by adrenaline and desire. Just. Keep. Going. The. End. Is. Near.

She made her husband’s favourite meal and dessert. There were his favourite cookies stored away. Loving and lovely actions. There would be leftovers and extras.

She was leaving a trace.

I moved through the house and that day in a fog. I did not know what to do with myself. Time was passing and the clock served as a continued, steady, audible reminder.

There was a final plot twist. When the palliative care nurses telephoned to confirm their arrival, an error was revealed. The time was wrong.

We had all gained an additional 30 minutes.

Then suddenly, the day was ending, and I found myself looking into my suitcase wondering what on earth I was going to wear for the death of my mum. She had clearly thought about this for herself. She wore colours and textures, soft and light.

I walked into her bedroom and cried as we hugged long and hard.

“Are you afraid?” I asked. Because I was.

“No,” she said.

She was ready. She knew how sick she was and how aggressively the cancer was taking over her body.

Her dislike for and disinterest in ‘doing’ sick was now irrelevant. She was grateful for the assistance that was available to her to bring forward the inevitable ending. This gratitude was to be conveyed by us to the nurses and doctor who would facilitate the close to her final life chapter. She had thoughtfully purchased festively wrapped boxes of chocolates for the people coming to help her die.

“I love you, Mum,” I said as I hugged her tight once again, fearing what it meant to let her go. I was fully aware that in several hours when I would again hug her, it would not be reciprocated.

We brought additional chairs into the living room. We were expecting guests, after all. We lit candles. Her energy and light were waning, preparing us for the fade to blackness.

Songs she had requested were played, offering us the space for a collective and private memorial with her in attendance. Her theme song by Canadian songwriter Rita MacNeil will always fill my heart and my eyes.

Final words of love

On that dark December evening in 2021, Mum sat back in her reclining chair, beneath her beloved plant full of blossoms that arrived with regularity in time for Christmas. We – her immediate family – looked on from across the room, bewildered by the reality and surreality.

The bureaucracy of informed consent was to be completed: verbal agreement and Mum’s signature to confirm. While our consent was not required nor requested, the doctor was attentive to our presence, for we would live on with these moments etched in our hearts.

In the slow, calm, reassuring tone of a man who knew the art and science of medicine, the doctor walked us through the stages of what we might see and what Mum would (not) feel. He anticipated that, altogether, the process would take 20 minutes.

“Do you have any questions?” he asked. I had so many. But they were for Mum, and I know they would remain unanswered. About this procedure however, no. I had no questions.

Did we want to say goodbye one more time? Absolutely and not at all. I do not recall how we all stood up. I cannot remember whether I hung back, hesitating, or if I eagerly stepped forward.

I wonder how she experienced those final expressions of love and sadness. To see the visible distress on our faces, to hear the emotion in our voices, the longing in our touch, the tears wet on our cheeks. Perhaps she witnessed this and emotionally turned her attention elsewhere. Perhaps towards the soundtrack of her final moments.

When she first met this doctor several months previously, Mum informed him that she would like to have her favourite album playing in the background. “What is that?” he asked. “ABBA Gold,” she replied. “Good choice,” he said.

Seated beside her, with the greatest hits of ABBA softly transitioning us all, the doctor put his hands over hers. After every push of the syringe, those hands returned to hers. I was deeply moved by this gesture. I later considered that he was likely monitoring her pulse. Few things are only this or that – care or clinical. I choose to believe it was both. Human, humane, healing. It felt as though he held us all in his hands.

“You are surrounded by love,” he said, and she closed her eyes.

The doctor said them to her, the last words she would hear. His words continue to echo in my ears and in my heart. They evoked tears then and now. For me, this was not a theoretical statement. She was surrounded by love in her decision with how and when to die. She was surrounded by love in her moments of death.

Debates in the UK

From the other side of the room, it appeared (to me) to proceed as the doctor had claimed. Quietly and quickly.

The morals and ethics of current debates, coercion and consent, considerations of “by whose hand” the cocktail of drugs are delivered – these are real. They need to be discussed and agreed by lawmakers and physicians.

In her living room, the debate seemed distant. Mum was already dying. She was ready, aware, and chose to have her life ending known.

Should I remain living in the UK, I hope I might be afforded this same opportunity. For now, if I adopted Mum’s reading habit, I would find a blank page. Ending unknown. Whatever the outcome from the legal and political debates on medical assistance in dying, it would be lovely if it had a final postscript that said “you are surrounded by love”.