Assisted dying – a first-hand account

hand of patient in hospital bed touching hand of loved one

Voluntary assisted dying is legal in most Australian states and territories. A leading international pioneer, Dr Stefanie Green, has written Assisted: A doctor’s story of assisting death and embracing life – a book about her journey. We share an excerpt, and publisher Allen & Unwin has five copies of the book to give away. Simply email your answer to the following question to newsletters@yourlifechoices.com.au, and include your postal address. Why was Peggy refused access to assisted dying? The first five correct answers will receive a copy.

•••

JUNE IN VICTORIA, BRITISH COLUMBIA, means long days of sunshine. Perched on the southernmost tip of Vancouver Island, the city lies just southwest of mainland Canada and north of Washington State. Sometimes referred to as the Garden City, it’s an oasis of lush, abundant greenery surrounded by the vast Pacific Ocean. The famously mild climate means it is home to elite athletes and retirees alike: one set rigorously sched uled, the other newly set free, both sharing the multiple walking and cycling  paths that crisscross this city by the sea. On most June days, while out for a walk, I can look up and spot several bald eagles. I bump into far too many deer, and often I stop to watch the otters dipping in and out of sight along the water’s predominantly undeveloped West Coast edges.

On this particular day, 6 June 2016, I’m not as attuned to my natural surroundings. I’m preoccupied with the proposed Canadian legislation known as Bill C14, which is working its way through the various layers of governmental process but, as a result of ongoing parliamentary debate, is not yet firmly in place. This technicality certainly isn’t going to stop suffering patients from asking for help. Despite not yet having a law to regulate the practice, as of this date, medically assisted dying is no longer criminal in Canada. Which means that on this momentous Monday morning, I am free to begin my work.

My first ever consultation in my new field of practice is with Peggy, a 94-year-old woman who was given my name and number by the local chapter of Dying With Dignity Canada (DWDC), a national advocacy group that is part of the larger right-to-die movement. I’d contacted them a few weeks earlier to let them know I would be offering this service. When Peggy initially called, she told my office manager that she was suffering from terrible osteoarthritis and had neurologic pain in her legs. She’d said she was simply fed up with living like this, that she wanted to die. I arranged to meet Peggy on the morning of 6 June, a few days after that initial phone call, and by the time I lift the heavy knocker on the door to her condominium, I am pretty certain she is one of the first legal consultations for MAiD, or medical assistance in dying, in Canada.

I have no idea what to expect as I stand in front of her solid oak door.  For the majority of my career, I have been a family doctor, specialising in maternity and newborn care. I haven’t practised general medicine or cared  for a patient over the age of 50 in over 13 years. More to the point, perhaps, I have never spoken with anyone who has so clearly expressed  a wish to die. Would a caregiver be there too? Would we meet in Peggy’s living room or in her bedroom? Peggy’s voice was fairly strong when we spoke earlier on the telephone to confirm her appointment, but I can’t quite picture who or what might await me behind that door. Just how infirm is she going to be? I am ashamed to realise I’m concerned about how I might react to what I see. Everything feels unfamiliar; I’m at someone’s home instead of in my office. I’m greeting an elderly person instead of a newborn. A new bag weighs awkwardly on my back. Even the old photo on my hospital ID badge looks like someone else. After 21 years of medical practice, I feel like a student once again: eager for experience, fearful of my limitations, and curious as to what I might encounter next. I let the heavy knocker fall.

“Dr Green, thank you so much for coming. I’m Peggy. Won’t you please come in?”

She is not nearly as unwell as I’d expected. Tall and lean, Peggy is wearing a comfortable dress and low heels. Though she walks with a distinct limp, she holds the wall instead of using a cane, and she insists on serving us both tea before settling down on her living room couch for our meeting.

Peggy’s view of the city is spectacular. Her spacious apartment is high up on a hilltop, and I can see all the way over to the downtown waterfront. The glass-fronted dining room hutch holds porcelain figurines and pieces of fine bone china, and three large, rustic wood bookshelves are crammed full of travel guides and novels.

Peggy serves tea and begins telling me about herself. Born in Germany in the early 1920s, Peggy lived with her family in Hamburg and was in high school by the time World War II began. She shares detailed stories of chaos and bombings, of family disruption, and of the loss of many close friends. “My story is long and twisted, but I have no regrets, and despite my share of sadness, I also have many wonderful memories.”

She describes emigrating to Canada at age 22, marrying a local man, and starting a family of her own, struggling to raise a child with special needs but fulfilled with a teaching career and a plethora of volunteer activities. Her daughter grew up to become independent, but I learn her husband died suddenly and unexpectedly after a small accident seven years ago.

“I have outlived everyone I know, my daughter no longer needs me, and I am in constant, steady pain. I am unable to contribute to society, so I  know my time is over. I am certain I am ready to move on.”

Peggy could talk all day, and I would happily listen. But I have not been summoned here for a social call. Despite the fact that I like Peggy and understand why she feels ready to die, I realise not long into our conversation that she is likely ineligible for my services.

I am aware that the proposed Canadian law is strict in its definition of eligibility. Among the requirements for MAiD, a person must have a ‘grievous and irremediable’ illness ‘grievous’ meaning extremely serious and causing a significant decline in function; ‘irremediable’ meaning it cannot  be cured. This includes the necessity that the patient’s suffering is intolerable and that a natural death is reasonably foreseeable. These criteria are about to become enshrined in our law and, like them or not, they have been put in place in an attempt to protect the vulnerable.

There’s no doubt Peggy is experiencing pain, but she isn’t exactly dying. I am hard pressed to think of what might ultimately cause her death other than her advancing age, which means that her death isn’t ‘reasonably foreseeable’, as the eligibility criteria demand. And she doesn’t appear to be in an advanced state of decline as she serves me tea and cookies.

I feel an unanticipated burden and wonder how often this will happen, that someone will ask me to help them but I will find they do not meet all medical or legal criteria. I’m worried I will disappoint Peggy when I tell her I won’t be able to assist her, but there’s no comfort in false hope, so I speak  frankly and try to explain: “I’m so sorry, Peggy. I understand your reasons for inviting me here today, but under the current law, you aren’t eligible  to have an assisted death. I see that you are suffering, but your death isn’t ‘reasonably foreseeable’, as the law requires, so I can’t move forward with  your case.”

She takes it well, tells me she isn’t at all surprised, and after exchang ing a few more pleasantries, I get up, say my goodbyes, and go.

On the drive back to my office, I reflect on what has just happened. I’ve learned a lot by listening to Peggy. In the course of two hours, and with very little prompting, she shared with me what was most important to her in life and why. I learned why she was asking for an assisted death, what resources might make a difference to her if she had access to them right now, and how she was or wasn’t coping in the meantime. I was reminded that the act of listening can be therapeutic in itself. But as I think about future appointments, I realise that unless I assume some control over the conversation, my visits could easily last a very long time. Moving forward, I’ll need to better triage my appointments, guide the course of the conversation, and  find out more about community resources for the elderly so that I can direct people to access the help they need, if they haven’t already done so.

“How’d it go?” my office manager, Karen, asks as I walk through the door.

“Enlightening,” I offer.

Karen has been my office manager for nearly 13 years. She is so much more than a manager, however. She is the voice and the frontline face of my medical practice. When I switched course from maternity care to assisted dying, there was no question she would come with me. Karen, a few years older than I am, lives in the neighborhood, wants the job more than she needs it, and is as loyal to the patients and the practice as I am.

“I’d forgotten how interesting older people can be,” I tell her.

Karen smiles at me as the phone rings: It’s a fax coming in on line two. “She was super-chatty with me on the telephone,” Karen says. “She didn’t sound that sick.”

“No, she’s not actually eligible.”

I turn my head and watch as my reliable old fax machine whirs into action. When it falls silent, I walk over and pull off the single sheet of paper that’s come through. I notice it’s from a colleague’s office.

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 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. 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 goes about making one for Harvey demographics on  the front sheet, blank request forms we might need tucked away in the back I pick up the phone and dial his number. His wife, Norma, answers. Since Harvey isn’t mobile, I agree to meet them in a few days at their home. This will give Harvey the benefit of a planned visit from his pallia tive care doctor beforehand and give me enough time to gather and review  all of Harvey’s medical records. I spend the rest of the afternoon speaking with Harvey’s liver specialist and learning how to connect remotely from my office to the hospital electronic record system.

Three days later, I stand in my bathroom brushing my teeth and practicing what I will say to Harvey. I go over how I want the conversation to begin, the tone I want to set. My plan for this second consultation is to orchestrate  things from the start rather than letting them randomly progress, as I did with Peggy.

As I turn off the water, I hear the familiar sounds of my home. There’s the drone of the Nespresso machine in the kitchen: My husband, Jean-Marc, is having his second coffee. Once an astrophysicist, he is now pursuing a path as an artist and entrepreneur. I hear the clicking nails of our dog, Benji, as he scurries outside to chase a squirrel. My son, Sam, 17, is probably still in bed; he has his music turned down low, but the steady beat of hip-hop reverberates through the walls. And I can hear the footsteps of my daughter, Sara, padding down the hallway, then the familiar creak of the fourth step: She’s heading downstairs for breakfast. She has a final exam this morning, and like any typical 15-year-old, she’s not likely to be particularly chatty.

I climb in the car and drive over to Harvey’s home, continuing to rehearse. When I arrive at the house, I walk up to the entrance, open the screen, and knock firmly on the wooden door behind. A man in his seventies with a bushy gray mustache opens the door and offers me a sad smile as  he extends his hand. “Hi, Dr Green, thanks for coming. I’m Rod, Harvey’s brother-in-law. Come on in.”

I cross the threshold and am ushered directly upstairs to an open dining area and living space, where I see two people sitting together on a couch, a man in a bathrobe and a woman sitting close beside him. The woman stands up without moving toward me. “Hello, Doctor, thank you for coming,” she says, smiling. “We spoke on the phone, I’m Norma.”

With short dark hair, a bright blue blouse, dark slacks, and a long chunky necklace, Norma is clearly of the generation who still dresses for the doctor. Her hands fidgeting in front of her, she appears slightly nervous, or maybe just awkward. I can hardly blame her as I recognise traces of the same feeling within myself. I push my nerves aside and begin. “Good to meet you, Norma, please sit, be comfortable. I’ll come join you.”

“My sister and brother-in-law are here too,” she adds as I walk into their living space. “Patty might join us in a bit, but Rod will probably stay out in the backyard.”

She sits back down, and I turn my attention to the man I’ve come to see. Dressed in grey pajamas and covered with a warm fleece blanket, Harvey looks at least 15 years older than his wife. I notice his protuberant, fluid-filled abdomen and papery, yellowed skin, signs that his liver failure is advanced. I see his frail hands and his gaunt, unshaved face. He likely has only weeks left to live.

“Good to meet you,” I say as I reach out to give Harvey’s left hand a short squeeze. It is cool and bony, mottled with purple, and has little musculature left for support, 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. It’s as if his movements are just a few seconds behind his intentions. Norma is sitting on his right, holding his other hand. I sit down directly in front of Harvey on a sturdy dining room chair that someone previously brought over, and I ready myself to begin what I have been practising all morning.

“I’d like to start by breaking the first rule of medical school.”

Norma looks at Harvey, who 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 sit down, be quiet, and let them speak first … good advice as a rule. But I want to start by telling you two things about myself.”

I am so focused on what I’m planning to say next that I barely notice the woman who silently walks into the room carrying a pad of paper and a pen. She sits down on the love seat to my right. I assume this is Norma’s sister, Patty, but I don’t ask. What exactly is the etiquette around these personal meetings? Would Harvey want her to be present for this assessment? Should I interrupt and introduce myself? My instinct tells me that Harvey should remain my priority, so I continue my introduction undistracted. If he doesn’t mind her attending, then neither, I decide, do I.

“The first thing I want to tell you is that I am pretty direct,” I say.

I notice Norma looking straight at me; so is the woman I presume is Patty. I suspect Patty is primarily here to support Norma, who is clearly here to support Harvey, who 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 quite frankly. I’m not going to use euphemisms or talk about ‘passing over meadows’.”

I pause for just a moment and lower my voice, speaking more familiarly, addressing Harvey directly, as if no-one else is in the room. “It’s like using anatomically correct terms. I want to be as clear as possible. You okay with that?”

I am relieved to see Harvey 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, the emphasis on the first syllable. “We’re going to get along just fine,” he adds. Norma seems slightly embarrassed but not entirely surprised that Harvey is swearing, and she chuckles a little, breaking the tension. I notice a tear slipping from her eye while she quietly bats at him, admonishing him for his language. She is playful in her chiding, and Harvey puts his other hand over hers but keeps his eyes on me, not wanting to miss what I might say next. His face looks more relaxed than when I first entered the room just a few minutes ago. A small smile is re-creating deep laughter lines by his eyes. I sense him settling in; I see the tension I wasn’t aware of leaving his face.

“The second thing I want to tell you is that I grew up in Nova Scotia perhaps not quite so interesting, but where I come from, in my family, we speak fast.” I pause. “I know I am a fast talker, but I’ve lived out here on the West Coast for long enough now that I think I’ve sufficiently slowed down. Sometimes when I get talking, I speed back up. My point is, if I’m talking too fast, I won’t be offended if you or anyone else asks me to repeat myself or slow down. Okay?”

“Okay.” Harvey says it with meaning, but I notice he’s a little unsteady. His head wobbles, and despite the interest I see in them, his eyes are sunken and watery. I am reminded why I am here.

My plan is to summarise his medical history as much as possible, to not waste precious time on the minutiae I can gather from his records. I’m going to ask some questions and answer some others, but mostly I want to set up a knowledge exchange. I want to explain how assisted  dying works, and I hope to find out what motivated Harvey to ask for it. The official requirements are rolling around in my head: the federal eligibility criteria, the provincial regulatory guidelines, the documentation necessities. I am keenly aware that I’ll need to elicit the answers to  a myriad questions I am just beginning to learn to ask, so I’ve made a cheat sheet of sorts and tucked it away inside the chart I’m now holding  in my hand. But I don’t look at it. I prefer to let the conversation unfold  a little more naturally.

I quickly get down to the essentials. “Why do you want to die?”

Assisted: A doctor’s story of assisting death and embracing life is written by Dr Stefanie Green and published by Allen & Unwin. RRP $32.99. You can read more about Assisted here.

If you enjoy our content, don’t keep it to yourself. Share our free eNews with your friends and encourage them to sign up.

Leave a Reply

Prince Harry

Prince Harry – victim of the ‘heir and a spare’ rite?

man cleaning decorative light fitting

How to clean every type of light fitting