6 hours ago
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The patient referral comes through my reliable old fax machine on a single sheet of paper. “Thanks for seeing this 74-year-old gentleman with end-stage liver failure. He’s been following the news carefully and is eager to make a request for an assisted death. I hear you’ll be providing this service here in Victoria – courageous! I look forward to your assessment. Summary of his file is below.” I read it twice to myself before sharing it with Karen, my office manager. We look at each other for a short moment before I break the silence. “His name is Harvey. I’m going to need a chart.”
While Karen makes a chart for Harvey – demographics on the front sheet, blank request forms in the back – I dial his number. His wife, Norma, answers. As Harvey isn’t mobile, I agree to meet them at their home.
Three days later, I stand in my bathroom brushing my teeth and practising what I will say, the tone I want to set. If Harvey meets all the criteria, he will be the first patient to whom I will offer medical assistance in dying (MAiD), following its legalisation in Canada just a few days earlier, in June 2016.
At the time I had been practising medicine for more than 20 years, trained as a family physician, and focused on maternity and newborn care, preparing women and their families for the profound transition a new baby would bring to their lives. But when it became clear the law was about to change to allow MAiD, I changed course with it, learning everything I could about this newly emerging field so that I could support people with their final wishes and their transition at the other end of life.
When I arrive at Harvey’s home for the assessment, a man in his 70s with a bushy grey moustache opens the door and smiles sadly as he extends his hand. “Hi, thanks for coming. I’m Rod, Harvey’s brother-in-law.”
I cross the threshold and am ushered upstairs, where I see a man in a bathrobe and a woman sitting close together on a couch. “Hello, Doctor, thank you for coming,” she says, smiling. “I’m Norma.” Her hands fidgeting, she appears slightly nervous, or maybe just awkward. I recognise the same feeling within myself.
Dressed in grey pyjamas and covered with a warm blanket, Harvey looks years older than Norma. I notice his protuberant, fluid-filled abdomen and papery, yellowed skin, signs that his liver failure is advanced. I see his frail hands and gaunt, unshaved face. He likely has only weeks left to live.
“Good to meet you,” I say as I give his hand a squeeze. It is cool and bony, mottled with purple, and has little musculature left, but he holds on a little tighter and just a moment longer than I expect, slowly shifting his gaze to look me straight in the eye before letting go. I sit down in front of Harvey and ready myself to begin what I have been practising all morning. “I’d like to start by breaking the first rule of medical school.”
Harvey musters a sly grin, intrigued, but doesn’t say anything, which I take as an invitation to continue.
“In medical school, they taught me that when I meet a new patient, I should let them speak first … But I want to start by telling you something about myself. I want to tell you that I am pretty direct,” I say.
Harvey is egging me on with a slow, wobbly nod.
“We’re going to talk about death today, and we’re going to talk about dying,” I continue. “We’re going to talk about your death, and we’re going to talk about assisted dying. We’re also going to talk about what’s important to you. I’m going to talk about these things frankly. I’m not going to use euphemisms or talk about ‘passing over meadows’.” I pause and lower my voice, addressing Harvey directly. “You OK with that?”
I am relieved to see he is smiling. “Yes, that’s exactly what I hoped for,” he says. “No more bullshit.” His voice is a bit gravelly, but this last word comes out strong, emphatic. “We’re going to get along just fine,” he adds.
I get down to the essentials. “Why do you want to die?”
Harvey smirks. “I don’t! I’d rather live. I’ve had a great life. But it seems I no longer have much say in the matter.”
It’s my turn to nod.
“I’ve got great friends, great kids, we’re blessed with family all around us. I know I’m lucky. I’ve been married to this gal here for 52 years … ” He trails off, holds Norma’s hand, shakes it at me a bit and swallows some emotion before continuing. “I really wanted to make it to 52 years, and I did.” He’s quieter now, his energy already drained. “Now I’m ready.”
Harvey is straightforward with me. He knows he is dying, that it will not be long, but he wants to control the how and the when.
“I want Norma and the kids with me at the end,” he says with a flash of spirit, “here, in my home, in my own bedroom … I want to do it my way. I want to have my friends over this weekend, have one last bash, maybe even sneak a sip of a beer.” He smiles at the thought. “I’ve seen friends linger on at the end … in bed … out of their minds. I’m not interested in putting myself or my family through that.”
Harvey ticks every box of eligibility. He is capable of making his own decisions, he is making a voluntary request, and he has a grievous and irremediable condition. He will need to sign an official request form, and Norma assures me it will be completed by the end of the day, witnessed by two independent people. After that, a mandatory 10-day reflective period can begin. The law also requires a second clinical opinion, so I will call a local colleague to see if he is available.
The next few days are busy. As is expected with his liver failure, Harvey continues to decline cognitively. If he declines too much, too quickly, he won’t be able to give his final consent immediately before the procedure, which is required. Because the second doctor and I agree this risk is imminent, we are allowed to shorten the waiting period. Harvey chooses a date three days out.
True to his word, two days before his scheduled death, Harvey and Norma host an open house for friends and neighbours to celebrate his life and say goodbye. Meanwhile, I review all the practicalities and guidelines. I am keenly aware that if I get anything wrong, I could be liable for criminal charges. The words “up to 14 years in prison” keep flashing in the back of my mind. No one yet has a sense of the mood of the prosecutors. Are they waiting to meticulously comb through each case and make an example of a clinician who makes a mistake? I’m not willing to leave anything to chance. Harvey isn’t just my first assisted death. His is the first on Vancouver Island and among the first in Canada. I am aware that I need to get this right – for myself, for the MAiD programme but, most important, for Harvey.
It’s 16 June 2016, the day Harvey has chosen to die. This is all about him, but it’s momentous for everyone involved. This morning I stood in my bedroom, staring into my closet, considering choices and discarding them immediately. What does one wear to a scheduled death? All black seemed morbid, bright colours too festive. I wanted to look professional but not cold, casual but no jeans. How could this be the hardest part of my day? I’ll be picking up the medication at 10am, I’m expected at Harvey’s by 11 and I suspect he’ll be dead before noon.
I pull up outside, close enough to have arrived, far enough that no one from inside can tell I’m here yet. I take a deep breath. In medical school, the saying was “see one, do one, teach one”. But in this case, there has been no way for me to “see one”. The law changed only a few days ago. I am about to take a big, blind step.
I leave the car and stride to the door. Once inside, I head upstairs. I catch Norma’s eye from across the room, but before I can get over to greet her, I meet Jessica, the nurse practitioner who will assist me, standing at the top of the stairs in her scrubs and stocking feet. All I can think of is that I do not want the family to suspect we have never actually met. I don’t want to do anything that might remind them I have never done this before.
There are eight close family members in the house. I ask to speak privately with Harvey for a few minutes and am told he’s in his bedroom, so I head there. Sitting in the chair by the bed, I begin, “How was your night?”
“It was what it was,” he replies. “I’m ready to go. I need this to be over today.”
The official purpose of this talk is for me to verify that Harvey is still clear of mind, that he still wishes to proceed and, if so, to obtain his final consent.
“Are you having any second thoughts?”
“No, none at all.”
Harvey reassures me that his affairs are all in order; his funeral plans have been made, the names of his lawyer and his accountant have been written out for the family. He expresses some concern about those he will be leaving behind. I try to reassure him I will provide them with some resources.
“Thank you for making this possible.”
I don’t recall who reached out first or when we began holding hands, but, once again, he is holding mine a little longer and a little tighter than expected.
“You know, I’m a little scared.”
“Of course you are … that’s OK.”
We talk, take the time we need. No one is in a rush.
“What do you think comes next, Dr Green?”
“I really don’t know, Harvey. What do you think?”
“I’m not a religious man, not even very spiritual. But I do not believe this is the end. It just can’t be.”
“OK. But what if it were, Harvey?” I ask. “What would you change, do differently?”
He continues to hold my hand. I hear his regrets – there are few – and of what he is most proud. I learn so much from Harvey. I am already grateful that he is my first MAiD patient.
At some point we both fall silent. I explain that I will go speak with his family about what to expect. By now I’ve reassured myself that he is still capable of making this choice. I hand him the required form and watch as he scratches out an unsteady version of his signature, then I join the family in the living room. I explain the order of events, the number of syringes – Harvey has chosen the intravenous option for his final medications – and the time for last words. I ask if there is any ritual or ceremony they’d like to incorporate, then I get down to the details. “The first medication is an anti-anxiety drug. It will make Harvey relax, feel pretty good, pretty sleepy. He’s already quite weak, so I expect he’ll fall quickly into a nice light sleep. We might hear him snore; that’s one way you’ll know he’s truly comfortable.”
I am trying to be as transparent and informative as I can.
“The second medication is a local anaesthetic to numb the vein. It may not be necessary if he is sleeping already, but some of the other medications can sting a bit, so I’ll use this to be sure he won’t feel any discomfort.”
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I notice involuntary nodding from Harvey’s brother, his son. I recognise relief on Norma’s face and see blank stares on the others’ … the reality is starting to sink in.
“The third medication is the stuff we would normally give someone for an operation, except it’s a much larger dose. With this, Harvey will go into a much deeper sleep, down into a coma over the course of a couple minutes. If you’re looking carefully, you might notice his breathing begins to space out with this medication.”
I am using my hands now to gesture what is going to happen. “His breathing will become more shallow and will most likely stop.”
I am looking around, trying to judge reactions.
“Even though I expect Harvey will die with this third medication, I will go ahead and use the fourth in our protocol, which ensures there is no muscular movement in the body. I will let you know when his heart has stopped. This whole process is likely to last between eight and 10 minutes.” I lower my voice a little. “I do not expect you will see any gasping or twitching or anything unsettling. My goal is to make this as comfortable and as dignified as possible. But there is a real possibility his breathing will stop before his heart does. If that’s the case, you will likely see a paling of his face, maybe a bit of yellowing. His mouth might drop open slightly. His lips may turn a bit blue. If you find yourself uncomfortable at any time, please feel free to step back, sit down or step out. There is no medal for staying in the room. I will be focused on what I am doing, so I’ll need you to take care of yourselves in those few moments, if necessary. OK?”
Muted nods. A few people breathe out as if they hadn’t realised they were holding their breath.
“That’s the nuts and bolts of it. I expect it’s all feeling a bit real right now. Any questions?”
There’s a pregnant pause, then a previously quiet man in his mid-70s asks, “You got any extra of that anti-anxiety stuff, Doc? I could use a dose myself right now.”
Back in Harvey’s room, he is calm, he is smiling, and he appears certain. His love for family has been evident from the start and they are all here with him now. We are huddled in closely around his bed. I ask if anyone has anything left unsaid. Harvey’s son reaches out from beside me and places his open palm directly on Harvey’s chest. He repeats that he loves Harvey and thanks him for being such a great dad. Harvey reminds them all that this is what he wants and asks them not to be sad.
I take hold of Harvey’s left arm. Only after he looks me in the eye and thanks me one last time do I think to begin. When I announce I will start, I sense Jessica reach out from behind me. I didn’t realise how tense I was until she put her hand on my back. I feel myself relax as I push the first medication through the syringe.
“Maybe now is a good time to think of a great memory,” I begin, “doing something you loved, with someone you loved … Go to that place now, feel that moment again … If you feel sleepy, go ahead and close your eyes, you’ve earned it. We’re all here with you.”
Then Harvey dies exactly as he wished: being held by his children and gazing into the eyes of his wife as he begins to feel sleepy. They connect, forehead to forehead, whispering to each other as I continue. She holds his face in her hands, strokes his head and tells him it’s OK. She tells him she loves him, that she will miss him, but that she is all right. She whispers inaudible words, evoking private memories, and he smiles. The intimacy of this moment is so absorbing that I struggle to focus on what I’m doing. She tells him to let go, that she is here with him, and as on most nights of his life, hers are the last words he hears as he falls asleep.
Harvey musters a light snore. Norma recognises the sound and dabs at her eyes. I continue with my protocol, and Harvey soon stops breathing; no one says anything, but I am certain we all take notice. I understand in that moment that I am witnessing this event as much as I am orchestrating it. I continue on to the final medication and immediately notice it doesn’t flow as smoothly as the others did. I have an instant of panic, wondering if my IV line is blocked, but it takes only a moment for me to understand it’s because Harvey’s blood is no longer circulating. I am certain his heart has stopped, but I continue nonetheless. Only after the last medication is delivered do I cap and lock the IV. Only after the empty syringes are resealed within the plastic container do I reach for my stethoscope. And only after I listen for a complete 60 seconds do I announce, “He’s gone.”
Only then do his family members allow themselves to be overcome by their loss. There are sobs, tight-clenched hugs and flowing tears. To my utter astonishment, there is also an immediate outpouring of gratitude for what I have just done, and for this, I’ll admit, I was unprepared.
By February 2017 I’d gone from being a beginner in a new field of medicine to feeling more certain of what I was doing. I was becoming known among local family practitioners and specialists for my work in assisted dying, and the number of referrals to my office continued to climb. The latest concerned a patient called Edna, whose worsening multiple system atrophy was affecting every aspect of her life. Two weeks earlier, her palliative care physician, Dr Vass, had been visiting when she’d asked him for MAiD by scratching out letters on a whiteboard. It was one week after her 77th birthday, just after she’d returned home from a hospitalisation, and she had repeated her plea several times since.
Edna managed a slight smile upon my arrival at her home a few days later, but her eyes seemed locked in a blank gaze. I noticed her frail body was strapped into her padded chair to stay upright. Before I even began, Edna was already scratching on the whiteboard. I waited for her to finish, three letters that said it all: “D-i-E”.
I was surprised and thankful she was still able to write. She looked up and I thought she was done. She uttered a sound I didn’t understand, then brought the marker down forcefully, drawing my attention to her message. “D-i-E P-L-S-!”
Request received.
Edna was close to her sister, Mindy, from whom I learned that Edna had been a pioneer for most of her life, one of only two women to graduate with a bachelor’s degree in biology from her college back in 1960. She taught high school science for two decades, did a few stints as the principal of two schools, then retired from her post as superintendent of the school district at 68. An avid hiker and a supporter of women’s rights, Edna had remained active and involved in various volunteer positions until her diagnosis overwhelmed her.
Edna was now unable to walk or talk, and had become dependent on others for care. Recently, she’d been losing the ability to swallow, and had landed in hospital last month after aspirating food into her lungs. There was talk of inserting a feeding tube into her stomach. She didn’t want that. She saw no reason to prolong her life as it was, but did not wish to starve to death.
I spoke again to Dr Vass and two weeks later I returned to Edna’s bedside with the news that I was convinced she was eligible, and I was willing to help her. She drew a happy face … no eyes, just a smile. We then turned to practical matters. Edna had been raised in a religious home and still had family who were deeply faithful. She’d been worried about their reaction, so she’d kept much of the decision-making to herself. Now she would share her choice, and hoped they’d be willing to join her on the day of her death. With Mindy’s help, we discussed some of the obstacles she foresaw, and I arranged for a hospice counsellor to facilitate what everyone expected would be a difficult conversation.
It didn’t go well. The counsellor said she had encouraged people to express their feelings and listen to others’ points of view, but much of the meeting had felt like a sermon: “As her brother was talking, she took the time to write out ‘CHRiStN ANtAgONiSM’. I’d say she’s determined to proceed.” When I returned to talk about choreographing the day of her death, Edna informed me that her relatives would not be joining us.
On the afternoon of Edna’s scheduled death, I arrived at her home expecting it would be a quiet affair. Instead, I walked into a chaotic scene. I could hear a man’s voice yelling as I opened the front door. Edna’s nephew Andrew and his wife were standing at the foot of her bed, pleading with her to reconsider.
“They have poisoned your mind!” Andrew thundered. “The church will never condone this. Your soul will never rest.” His anger was mounting. “We will never condone this!”
“Good afternoon,” I announced loudly. The yelling stopped immediately. “I’m Dr Green.”
Edna looked calm, but her face was hard to read. I asked Andrew and his wife if we might talk in another room. I told them I respected their position, but it really didn’t matter what they wanted or believed: “This decision is Edna’s and Edna’s alone.”
Andrew lapsed into silence. He stood up abruptly, then sat back down. “How can it be possible that, as a close family member, my arguments won’t be taken into account?” he asked.
I assured him his arguments were important but only in relation to his own healthcare and no one else’s. “This is unconscionable!” he began ramping up again. “If you proceed, I’ll call the police. In fact, I’ll call them anyway. This must be stopped. You cannot just kill my aunt.”
I was concerned to see him so upset, but Edna’s diagnosis was clear and she had made a voluntary, formal request. I felt sorry for her family, I understood they would need support, but I would not be bullied out of my responsibilities, nor would I let them bully Edna.
“You can call,” I said. “I suspect they will be helpful in enforcing the law and escorting you out of this house.” Then I checked my tone and took a breath. “It would be a shame if that were Edna’s final memory of you.” We stared at each other in silence.
“I see,” he said, and stood up once more. “Alice, we are leaving. We’ve done what we could. Aunt Edna will pay the price. I will not attend her murder.”
And with that, they walked out. Mindy was just arriving, but they did not stop to talk. I was saddened to see them go, but I was also relieved.
In an odd twist of fate, I was alone at this procedure. There had been a conflict in scheduling, so Jessica had come by earlier to start the IV, then left. In the end there was just Edna, Mindy and me in the bedroom, and Edna used the whiteboard to provide her consent. When I asked if she was ready to begin, she grunted and nodded slightly, then grabbed my hand and squeezed firmly, three times. I didn’t really know what her hand squeezes meant, but they felt like a thank you to me. For a woman who couldn’t speak any more, I thought she’d communicated beautifully. I began.
Later, alone in my car, I ran over the events in my mind. Andrew referring to Edna’s death as a murder had been upsetting, even though I knew it was purposeful hyperbole. I had to remind myself it was Edna’s disease that was killing her and my role was only to facilitate her free will. Afterwards I asked colleagues if they’d ever encountered such resistance, and I’m sorry to say I wasn’t alone. Much more common, though, were friends or family members who declined to attend, citing differences in values, but remained respectful of their loved one’s right to do as they pleased.
I spent several weeks worrying about whether Edna’s event might lead to a complaint to the professional licensing body. I was confident of the outcome, but dreaded having to go through the process. I took comfort in the fact that, in the end, Edna died with dignity, holding the hand of a person who loved her, confident in her decision and empowered by a rights-based legal system. I’m happy to report no complaint was made.
