After my second round of standing vigil at the side of a dying parent, my siblings referred to me as “the closer.” They lived nearby and had spent months tending daily to Mom, then Dad. They accompanied them to doctor’s appointments, joined them for dinner, put up the Christmas tree, filled the woodbox for the fireplace. I lived a full day’s drive away in Maine, but unlike them I had the flexibility to leave home for two or three weeks. Twice. That’s about how long it took for each of my parents to die, once they decided to make it happen. Those intimate days in relationship with death left me thoroughly depleted, strangely euphoric, and racked with questions.
When my father decided to die in July of 2017, we weren’t particularly surprised. He was not depressed. At least, no more than was reasonable for someone in his 84-year-old state of physical decline. I’d say that Dad loved life as fully as anyone I’ve ever known, maybe more than most. None of his doctors had even raised the idea of hospice care. However, having been a management consultant for fifty years, a planner, researcher, and strategist, Dad weighed the pros and cons. He was a man who recognized when something needed to be done and did it. So he sat down in his living room recliner, picked up the phone, and began the work of investigating the best way to make a peaceful exit. What are the options? What do I have to do? How long will it take?
You might think that in this age of information the answers to Dad’s questions would be a click away, or that he could gather pamphlets at one of the many doctor’s offices he’d been frequenting. No such luck. The prevailing pursuit in healthcare is fighting illness. Dad had many doctors, each fighting one star-point in his complex constellation of diseases, but no one seemed to be fighting for the patient’s universe. The medical community tends to focus on survival, the preservation of the patient’s life with minimal discomfort. But what if survival is no longer the patient’s goal? Where does he go for help then? How does a daughter respond to her highly rational father when he says, “Boy, I don’t know, Robin. I’m not sure this is worth it any more.” How do you help your father die?
During the first half of 2017 Dad’s references to his own end crept more frequently into his conversations, but he also continued seeing his doctors – he had twelve of them by July. Dutifully compliant about the radiation, the back brace, the dietary restrictions, and the dizzying mélange of medications, Dad stuck to his daily refrain of gratitude. He was the ultimate privileged white guy and knew it. Although it could be tiresome hearing him extol upon his amazing good fortune, I admired his optimism and especially his loyalty, which you could say led to my existence. Despite all the accolades for accomplishments both in his career and in retirement, Dad considered marrying my mother his crowning achievement. Marrying Mary was the result of a campaign he’d waged with wily patience from age fourteen to twenty-two. He called her Mouse. Her children called her Bimma. Our parents made it through nearly sixty years of marriage before Bimma died in 2014. Even then, Dad remained fully engaged in life, because “That’s what Bimma would want me to do.” However, three and a half years later Dad examined the odds and concluded that it was time to go.
On July 16, 2017, Dad wrote us a letter. It was loving, light-hearted, logical, and redolent with Dad’s professional training. The heading read: “Open letter to my five children, to be shared as they wish.” Thank you, Dad. I am sharing it now. He began with thanks and gratitude, then produced three numbered lists of talking points. The first list recounted everything he had to be thankful for in his long, successful life. The second was a list of bullet points itemizing his diminished physical and situational condition (concluding with the remark: “accumulated ailments of 85 years on earth! Wonderful years!”).
“So where does that lead me in thinking about the future?” Dad’s letter continued. Here is his list number three:
- Adding it up, I am convinced the odds of achieving an acceptable quality of life, or maintaining it for significant time, are very small and approaching 0.
- As I feel and function today, I would prefer to be off the planet.
- I have no unrealized dreams, hopes, goals. (sic), no need for one or more trips to Big Wolf or other beautiful places. Of course, seeing all of you and your families continuing to thrive would be nice, and same for key institutions like TWC (and QLF, etc.)—but not needed. Departure preferable.
- I want to “go out on top,” and not put myself, you, or others through continuing decline and misery—although this might not be your preference, which I love you for. There comes a right time to retire, and I am convinced this is it for me.
- As you know, I am at ease with death, but horrified at the miserable process of getting there. So, please let me go, as comfortably as possible.
- In brief, I’ve had a wonderful life, and now it is time to go.
P.S. I know this is hard for you, and I thank you all for your love and support. Let me go joyfully and with all the positive memories.
Probably more to be said, but let’s stop here!
From your loving, admiring, and grateful Dad
The letter silenced all five of us. We felt differing degrees of resistance to Dad’s logic, but after extensive follow-up conversations, concluded that his thought process was sound. We wanted to support him, so the next step was to execute Dad’s plan.
My mother’s death three years earlier had laid the groundwork for Dad’s decision. Like Dad, Mom steeled herself to the various, nefarious counter measures recommended by the medical community after they discovered both esophageal and colon cancers. Her small-but-mighty physique normally topped out at around 105 pounds, but after months of treatment it had dwindled to 78. Still she persevered, even after she was sent home on hospice care. She fixed herself cups of tea, chewed rice crackers to pulp, and with the determination of a mountain climber, gripped the bannisters with both hands to scale her home staircase without help. Mom was a fighter, a competitor, and she truly wanted to win. Nevertheless, she had her limits, and when she reached them, she was decisive. A few days after starting hospice, we had a family meeting with the hospice social worker. Mom voiced concerns that her family would “strap her down” and not let her do what she wanted. “No, no!” we cried, assuming that she meant choosing to stop medications, go off supplemental oxygen, or smoke a cigarette. “We fully support you, Mom.” We were mistaken.
“Okay, I want to do this while I’m still clear about it,” she announced the next morning. Our blank looks elicited Mom’s exasperation. “We’ve been through this!” she said. Her intention, she explained, was to go out to the garage and start up the car, to die by exhaust inhalation.
If “death with dignity” laws had existed in New York State at that time, I am certain Mom would have asked for a pill. However, physician-assisted suicide remains illegal in New York as of 2018. Even so, I will confess to you that a few of us took pause when Mom’s wishes were made so abundantly, beseechingly clear. For a time – less than an hour but more than a flash – we actually considered offering Mom this parting gift. Should we turn a blind eye and let her seize control? My college-aged daughter, bewildered to see her family entertain the idea of letting Bimma kill herself, shook me back into reality. “This is so fucked up!” she cried, shaking with tears.
The family regrouped. “We can’t let you do that, Mom.”
“Why not?” she demanded.
“Because, it’s illegal. We could end up in jail.”
Our well-being was a foolproof counter-argument. Mom acquiesced, deflated. We won, but I still wonder. Surely it’s wrong to let your mother kill herself. But – might it be wrong not to?
The ethics of choice and autonomy at the end of life are hopelessly entangled, a mass of legal, medical, moral, and personal conundrums. I have spent years now seeking a better understanding of our options at the end of life and the repercussions of various choices. One thing I discovered is that in avoiding one form of trauma we sometimes inflict another.
At the age of fifty, my friend Katie hugged her parents goodbye after her usual summer visit to their home in the Midwest. Then she made the thousand-mile trip home to the east coast. Her mom and dad, aged 77 and 80, had minor medical issues but were fundamentally in fine health.
“Mom was more teary than usual when she said goodbye, but I didn’t really think about that until later,” Katie said.
A couple of months later Katie’s parents cleaned up their house, set up two lawn chairs in the garage with the doors shut, and started up their cars. They settled into their chairs and died by carbon monoxide inhalation.
“My parents had told some people that they ‘had a plan,’” Katie said, “but saying it and doing it are so different.”
Katie’s maternal grandmother had talked about ending her life as well, years earlier. “When I get old I’m going to just take a pill,” her grandmother said, but she never did. Instead, she ended up in a nursing home with severe dementia, unable to recognize her daughter. For Katie’s mother, the sight of her mom so diminished was torture. That, Katie, thought, was a big part of her mother’s motivation to take her own life.
“My mom didn’t want her children to see that, to go through what she went through, or to be a burden. I can rationalize the whole thing in some ways,” Katie said to me, “but it was so hard, so sudden.” In spite of her valiant effort to find peace with it, the shock and grief of her parents’ deaths still lingers with Katie twelve years later. Her mind is filled with what-ifs and questions that can never be answered. “My siblings and I talk about it. We can all appreciate their rationale, but why so soon? We wish they’d talked to us, so we could at least have said goodbye. But maybe they were afraid we’d talk them out of it.”
I asked Katie how her experience has informed her opinion about the choice to die.
“I feel really conflicted,” she said. “I don’t want to be a burden to my son, but I don’t want to just disappear either. There’s no in between solution…well, maybe there is. Hospice and palliative care. I don’t know. Death is just a difficult thing.”
Death is a difficult thing. It is also inevitable. One of the few absolute convictions that my death explorations left me with is that we must talk about death sooner and more often, before it slips under the covers in its intimate way and takes the conversation out of our hands. Unfortunately, the group that needs our advocacy – the dying – don’t stick around long enough to give us their testimonials. It’s up to the living to fight for a better life for the dying.
I have attended “Death Cafés” and an end-of-life book club based on Will Schwalbe’s book by that title. The atmosphere was surprisingly cheerful, even though attendees included not just those who were grieving, but those who were dying. Participants went home to their families, they said, and “conversation happened.” A fear faced head-on loses its power. That is the premise of another national outreach program called “The Conversation Project,” whose statement of purpose says, “Too many people are dying in a way they wouldn’t choose, and too many of their loved ones are left feeling bereaved, guilty, and uncertain.” In other words, too many people are experiencing bad deaths, traumatic experiences which can haunt and torment those left behind.
Four days after her aborted wish to kill herself by asphyxiation, Mom awoke with a calm air of clarity.
“I think I’d like to go. What do I have to take? A lot of something?”
It wasn’t that easy. Overdosing on one of the prescribed hospice medications is risky. It can end with the trauma of respiratory distress, stroke, or some other form of nightmarish aftermath – perhaps worse than death – which the patient’s family must witness. One path, safer to manage, could offer Mom a semblance of self-determination. She could cease all life-sustaining input, including food and water. There is a name for this option. It is called VSED, voluntary stopping of eating and drinking, and it is entirely legal. The thing is, even at this stage of Mom’s disease and dwindling, no physician or caregiver had spoken to her about the VSED option. That is where my story becomes dependent on one highly relevant asset. My husband Jonathan is an ICU physician. Yes, he helps to save lives, but he also knows more than the average son-in-law about dying.
Our national hospice care programs, now serving over a million patients per year in the U.S., provide invaluable support to patients and their families during the final chapter of life. I have nothing but gratitude for the employees and volunteers who helped my family by phone and in person during my mother’s and father’s deaths. I am not alone. A recent national study indicates that those enrolled in hospice care report “better symptom relief, patient-goal attainment, and quality of end-of-life care,” compared to those not in hospice care . Even so, not every hospice story is a good one. Hospice services are not available in every remote corner of our country, and even where it is available staff and resources are often stretched thin.
In a recent New York Times article, Karen Brown told the story of her father’s final days in home hospice care. Under the right circumstances, living those days with someone you love can be deeply meaningful and precious, as it was for Brown. That is, until her father’s last 36 hours of life. When her father’s pain spiked, it happened to be late in the evening, after regular office hours. Brown’s family reached the 24/7 hospice switchboard, but too many agonizing hours passed before a medical professional was able to tend to her father in person. During his final hours he suffered, and his family suffered with him, helpless to relieve him. “At the end of life,” Brown wrote, “things can fall apart quickly, and neither medical specialist nor hospice worker can guarantee a painless exit. But we were told a palliative expert would be at my father’s bedside if he needed it. We were not told this was conditional on staffing levels.”
In our case, we had a medical specialist on hand every step of the way. Even when Jonathan could not be physically present, we were armed with the extensive tutorials he had given us for treating pain and distress. Equipped with his expertise, we could bypass protocols that can cause delays in response to acute changes. More morphine, more Ativan, but not too much, just the right balance to allow comfort and preserve consciousness. Unconsciousness might become preferable later on, during those final hours or days when awareness and a sense of “dignity” can no longer coexist. Finding that delicate balance and making those decisions are not cookie-cutter prescriptions. It requires close observation, experience, and rapid follow up.
Twenty-four hours before she died, my mother sat with us in her hospice-issue wheelchair at our dining room table – turkey dinner, red tablecloth, candlelight. In a twilight, dreamlike state, she smiled at our faces around the table, held a glass with wine in her hand as if she might take a sip, and told us to quit staring. “Start,” she said. It was our family’s last supper together. She drifted peacefully into unconsciousness the following evening, aided by those two blessed pharmaceuticals, Ativan and morphine. At ten pm, after three days of VSED, Mom took her last breath.
It was a beautiful death. The goal of hospice is to provide such a death every time, for each patient and for their families, who carry the death in their hearts for years afterwards. Given hospice’s financial and staffing constraints, however, it is impossible for them to guarantee that kind of on-the-spot care for everyone who needs it, right when they need it.
Long before I witnessed my mother’s struggle to take control of her own death, I considered myself a staunch advocate for legalized physician-assisted suicide, along the lines of Oregon’s Death With Dignity Act passed in 1997. After Mom’s experience, I felt even more adamant about personal choice at the end of life. In the fall of 2014, half a year after Mom died, I followed the story of Brittany Maynard with feverish intensity. Brittany was a young woman diagnosed with a brain tumor who moved to Oregon to take advantage of their law. She became a heart-rending spokesperson for physician-assisted suicide, and her story took root in the fertile soil of my grief. I wrote Brittany a letter. I sent money to Compassion and Choices. I simultaneously grieved her passing and applauded her efforts to promote the right thing.
Then I began seeking more information, and my assuredness faltered.
Early in my explorations, I was sure legal suicide was the only way to provide a sense of personal agency rather than defeat at the end of life. However, after hearing stories like Katie’s, after speaking with physicians, social workers, and hospice volunteers, and after reading numerous books and essays about the end of life, I began to be swayed by the compelling case for hospice and palliative care as the preferred solution to ending life well. There are alternatives to assisted suicide that may provide exactly the sense of dignity, peace, and personal agency that we seek.
“The hospice movement,” writes Eleanor Clift in her book, Two Weeks of Life, “goes to great lengths to separate itself from the movement for physician-assisted suicide. The purpose of hospice is to ease the passage to death, not to euthanize.”
Palliative care physician Ira Byock is renowned in his field as a practitioner, educator, and author, and has taken part in several panel discussions on radio programs like NPR’s “The Diane Rehm Show.” Byock is an outspoken opponent of efforts to legalize physician-assisted suicide, arguing that no physician should take an active role in ending a life. His impassioned advocacy is for more investment of time and resources into improving end of life care. There is nothing undignified in dying naturally, peacefully, with one’s pain and suffering managed well, he says. Indeed, many of the vocal arguments for the right to die base their position on horror stories of pain and suffering. Witnessing a traumatic end can haunt us for years.
But what if that model of dying – the one that means pain, suffering, lengthy hospitalizations, and aggressive, dehumanizing treatments – goes away? Suppose we fix our broken system where dying badly is all too common, and replace it with more options for dying well: more hospice benefits, more palliative care programs available to everyone, more attention to quality of life rather than quantity in our final days? If the threat of dying badly goes away, will people feel more peaceful about dying naturally, at home, without distress, among family? If my mother’s example of dying naturally at home were the norm, would we be arguing so vociferously for assisted suicide?
When my dad made his decision to die, his “option A” was a quick and efficient exit. He had several private conversations with Jonathan inquiring about an easy way out, under the radar, but one that would not put Jonathan in legal jeopardy. There was no such option. So he went for option B, a repeat of my mother’s quiet end. The thing Dad didn’t fully appreciate was that he was in much better shape than my mother had been when she chose the VSED option. Plus, Dad’s doctors hadn’t even raised the subject of hospice care. The first thing Dad did, with Jonathan’s counsel, was to initiate a conversation about hospice with his doctor.
Dad’s doctor agreed to assert that Dad had less than six months to live. The only reason that estimate was reasonable, however, was Dad’s clear intention to stop eating and drinking. The miracles of modern medicine could have kept him going well beyond six months, and Dad’s doctors were still in preservation mode. How many patients realize that they can request hospice care before they are actively dying? Most do not know it is an option, so why would they raise the subject? Certainly, most people do not know about VSED. It is all too common that healthcare professionals leave it to their patients to initiate conversations about end of life, while patients tend to defer to their doctors to lead the way. Death is the elephant in the room.
Once Dad’s hospice resources were in place – the attending physician consultation, the nurse visits, the social worker consultant, the box of pain and anxiety medications, the adult diapers, the bed liners, the mouth swabs – Dad began his regimen of depriving himself of sustenance. Because Dad was such an avid communicator and social guy, he also proceeded to take his leave with off-putting good cheer. Something about having made his decision made him almost celebratory.
I moved in with Dad during his last two and a half weeks of life and was witness to the constant stream of visitors, come to say goodbye. He was taken aback by the outpouring of love and admiration. “Could I really have meant that much to so many people? This is just too much.” But he never shed a tear. He became the best version of himself, hugging, comforting, and uplifting others with his humor and buoyant rosiness. “I’m so sorry. I know it’s hard, much harder for everyone else than it is for me.” I found that one of my more important jobs was accompanying family and friends to their car. That is when their tears came, when their eyes glazed over or they paused to stare at the flagstones on the front path and say, “I’m going to miss him, a lot. He is a very, very good friend.”
Every day, Dad got himself up, bathed, combed his hair, put on deodorant, and dressed meticulously. He wore khakis, support socks, a golf shirt, fleece vest and a fleece jacket with pockets carefully stocked – pill boxes, Kleenex, spare glasses, ointment, Biotene for dry mouth, dental picks, pen knife, eye drops, cell phone. He took his walker to the top of the stairs, heaved a sigh, took the electric stair chair down to the ground floor, then set up in his recliner or outside on the deck for the day. Dad was such a soldier when he took up the mantle to die. Never have I lived so intimately with such a regimented routine. No wonder he kept on going so long.
When Dad was not entertaining guests, he was usually on the phone. He pored through his address books to make sure he left no one out. “I want to check off all the boxes,” he said. Hearing only his side of many phone calls, I wondered how his openness was received.
“Well I wanted you to know what’s going on. I’m checking out. I’m on hospice at home, and they’re keeping me very comfortable…”
“I’m on my way outta here, off the planet…we all have to go; we can’t be here forever, nobody will.”
“I don’t know why more people don’t do this. Maybe they chicken out.”
One phone call was with a friend who was in the late stages of prostate cancer. My sister walked in and heard, “Well yes there’s the plastic bag over your head option. Eight minutes? Really? And of course there’s a gun to your head, or you could slit your wrists…”
There were many variations on one particular sentiment: “It’s been an incredible life, beyond my wildest dreams.”
With his children Dad was candid in a different way. He exposed some impatience with the process.
“How are you doing, Dad?” said my brother one day.
“Well things are progressing slowly in the right direction, not as fast as I would like.”
Eight days into his VSED regimen, we wondered if his resolve was waning. Dad sipped water to moisten his mouth, ate a tiny cup of ice cream in the evenings (“It feels heavenly in my mouth!”), and when friends brought him a coconut with a straw, that became his newest passion. “Nectar of the gods!” he’d exclaim appreciatively. Was he having second thoughts? One glorious, late July day he sat on the deck listening to the sounds of birdsong and a nearby stream, lazily babbling over stones.
“You’d think on a day like this that I might be changing my mind, that I might want to hang around for another day.” His eyes were closed, getting a bit sleepy after a dose of morphine. Then he shook his head; “Nah,” he said. “I really don’t.” His cerebrations on dying continued, and his ultimate goal never wavered. As I helped him into bed each night he was particularly thoughtful.
“The ideal, of course, would be to just fall asleep at some point and not wake up,” he said.
“Well,” I answered, “I have a feeling you’re going to wake up another couple of times, Dad.”
“Yup, I think so too.”
My siblings and I found ourselves conflicted. Our interior dialogues went something like this: Doesn’t Dad want to die? Why is he eating ice cream? Wait…what am I, some kind of monster? Of course he should eat ice cream if it makes him happy. But…aren’t we supposed to be supporting his wish to be gone? I wonder how long this might take. Should I cancel that trip I have planned for next week? Jesus. What is the matter with me?
A palliative care colleague of Jonathan’s passed on some advice: Play his favorite music. Give him a foot massage. Look at old pictures together. Pamper him. Celebrate him. We did our best to do that, but we also gently broached the subject of the coconut water and ice cream. “Of course, Dad, we want you to do what you want, but I think it might make things longer.” “How much longer?” Dad wanted to know. Days? Weeks? He questioned Jonathan about the timeline, but how can anyone know? Dad had asked Jonathan about many things – the physiology of his body as it starves, the repercussions of ceasing heart medications, Coumadin, and all the array of his other daily pills. Not every question had the kind of clear answer Dad sought. If a bite of ice cream makes you feel good, consider it comfort care, said Jonathan. Enjoy it.
“Will that extend things?
“What about coconut water?”
“A bit in your mouth is okay.”
“What if I drank a whole coconut’s worth every day?”
“That would probably extend things.”
“By how much? A week?”
“I don’t know.
Later that day my sister Beth was with Dad. “Do you want some coconut water?” she asked.
“That’s a difficult question,” he said, like a professor puzzling out an enigmatic equation. “I want to drink an entire coconut’s worth of water. I also want to not prolong this process. So getting what you want can be complicated.”
If it’s the feeling that you love, suggested Jonathan, you can hold those foods in your mouth and spit them back out.
When Dad took his last ever shower, sitting on his shower chair, I was there to help him dress afterwards. Aside from his ice cream and coconut water indulgences, he had been VSED for thirteen days.
“I’m scared,” he said.
Here we go, I thought, the second thoughts. “What is it you’re scared of?”
“Fainting. And Falling,” he said. No fear of dying. He just wanted to get there without a crisis. He also worried about how he would bathe when he got too weak. I explained that we would roll him onto one side then the other in his bed, give him a sponge bath. He gave a wry grimace. “That doesn’t really sound like my style.”
“I wish this were easier,” Dad said to my sister the next morning, as he was gagging down half a Torsemide and an eplerenone.
“You mean the pill swallowing?” she asked.
“Dying,” he said.
Dad had not wanted Ativan up to day thirteen. In fact, I started taking Ativan before he did. The strain of the daily unknown was breaking me. Electric jolts ricocheted through my torso. Every night as I lay in bed down the hall, I wondered if Dad might take his last breath alone. One evening Jonathan called while I was sitting next to Dad, who was watching Disney’s Frozen on TV from his recliner. I looked over to see Dad’s mouth hanging open, and I froze, staring at his chest for any sign of movement. That’s when the phone rang, and Dad stirred. I couldn’t speak for a moment, heart racing. “Sorry,” I said, “I just looked over at Dad and I thought he might be dead.”
My doctor called in a prescription for me. Dad, however, slept with the serenity of one who knows his path. Ativan could make him more susceptible to falls, Jonathan warned. Dad also avoided the drug because he wanted to keep his head clear as long as possible, interacting with people, talking on the phone, having deep conversations that started with his standard opening line: “So, what are we going to do to save the world?”
Nevertheless, after taking his pills on the thirteenth day, Dad said, “I can’t put my finger on why, but I think I’d like to try some Ativan this morning.” That night when Jonathan and I helped him get to bed, he gave us a hopeful look. “Maybe I’ll get my release papers soon.”
It took four of us to get Dad upstairs and into bed on day fourteen. He couldn’t help any more. Jonathan had arranged upholstered chairs and a TV in Dad’s bedroom, making it a homey, welcoming, living room. A dying room. The next night, night fifteen, Dad fought suddenly to rise from the bed, to use the urinal, but he was so weak. Even with Jonathan on one side and me on the other, we struggled, he slipped, something hurt, his elbow was bleeding. He was in distress and couldn’t find the words to explain.
“This process sucks, guys. This whole thing really sucks,” said my sister.
Jonathan knew that Dad wanted to be spared these end game traumas; we all knew, but it took Jonathan’s confidence to say it was time to up the Ativan, let him be unaware of this final slipping away of self. We painstakingly administered the morphine and the Ativan, to make sure there were no more breakthrough traumas.
It so happened that only Dad’s five children sat together around his bed for a stretch of time on his last night. What a rare thing it was for the five of us to be alone together with our Dad. We talked to each other, letting Dad hear our voices, holding his hand, lying by his side while he slept peacefully. We decided to cancel the overnight aide and keep watch in turns through the night.
At two fifteen the next morning, sixteen days after stopping food and water, Dad took his last breath during Jonathan’s watch. It was such a gentle ceasing, Jonathan said, that he only realized it was over when he became gradually aware that the sole sound was the crickets’ song outside Dad’s bedroom window.
It was another beautiful death. But a part of me suspects that I deem it so partly because I am determined that it be so. My sister was right too. It also sucked. I am both grateful and disturbed that my family’s experience of death was about as wonderful as death can be. It is true that during those sixteen days we enjoyed some of our most memorably cohesive family moments, but must those final days be quite so painful and prolonged? Why did my father have to take two weeks to slowly starve himself to death? Is this really the best that we can do? And what about everyone else? What about those without a doctor in the family, without a hospice worker right at hand, without the wherewithal to know how much medicine is enough, and how much is too much?
Carl, a close friend of ours, practices palliative care medicine in Canada where end-of-life laws have undergone recent changes. In 2016, the Canadian federal government passed legislation that decriminalized suicide and assisted suicide. The amended law allows “medical-assistance-in-dying” (MAID), defined two ways. In the first, a physician or nurse-practitioner may “administer a substance that causes death,” otherwise known as euthanasia. In the second, the medical practitioner may “prescribe a drug that the eligible person takes themselves, in order to bring about their own death.” That version is similar to some U.S. states’ “Death with Dignity” laws. Canada’s law meticulously proscribes requirements for anyone requesting MAID. The list includes a second professional assessment of eligibility, informed consent, a request in writing, and a ten-day “reflection period.” The laws differ slightly in each province, but it requires that every Canadian have access to some form of MAID.
At first, Carl assumed the new law would have nothing to do with him, since palliative care, according to the World Health Organization definition, provides relief and support with no intention to “hasten or postpone death.” However, when his patients began to request MAID, Carl changed his mind. He had the right to refuse, since the law does not require any physician to perform MAID against their conscience. But Carl considers it his primary obligation to care for his patients. Absent a conscientious objection, he could not justify abandoning them to another, unknown doctor for this final, monumental act of caregiving.
Since Canada’s new law passed, Carl has administered MAID to twenty-five patients. He has refused requests twice. Nothing in his thirty-year medical career has moved him so profoundly as sharing that most intimate transitional event for patients and their families, he said, except perhaps delivering a child. I was not surprised, since I had the same thought after overseeing my parents’ deaths. Birth and death are akin to each other, a crossing of the threshold between worlds, a temporary window opened onto the infinite, to a place beyond reach but always with us.
At the same time, Carl has questions. He wonders if it should be his place to join a family during such a sacred time. Shouldn’t something this intimate be a private experience? On the other hand, he also questions prescribing a pill with the power to end life, ceding responsibility to the patient. Patients often change their mind, as he has witnessed. What happens to the pill then? Carl knows first hand that “important things can and do happen at the end of life. Are the patients who choose MAID missing out on something?” Though Carl accepts with great solemnity the responsibility requested of him, he recognizes the imperfections of this new system.
Even in a perfect world, death must exist. The living must bow to natural progression, making way for the magnificent, perpetual cycle of new life. But perhaps in a more perfect world, each human being would have access to exactly what they need to face death without pain, misery, or fear. Opponents of MAID and Death With Dignity argue that those options are detrimental short cuts that undermine efforts towards the ideal — better, universal hospice and palliative care. Philosophically, many physicians like Carl agree that hospice and palliation are the ideal, but they also believe that patients need alternatives as long as that ideal does not exist. The truth is that even with optimal care, many patients’ suffering remains unrelieved by the best that palliative and hospice care can offer. What then? Must we resign ourselves to the possibility of a nightmare scenario, where the patient’s final hours or days are wretched and those they love are scarred by trauma and regret? Even in my Dad’s case, is it unreasonable to wish that he and his family had been spared those last days, when he suffered frustration and pain, only eased through total sedation?
At the end of her New York Times article, Karen Brown wondered if a hospital death might have spared her father the pain of his final hours. She made an effort to see the positive side of her father’s passing, despite the hours of suffering he experienced when hospice could not get to his home in time, at the very end. Her words reverberate in my chest. “Ultimately, even without pain relief, he was probably more comfortable in his own home, tended by his children, doing our best. But then I think: He deserved to have both.”
Dad liked the idea that he might do someone some good, even by dying. “What are we going to do to save the world?” Even a few days before he died, he was still trying to find ways to contribute, to make the world a better place. I told him that I was pretty sure he was giving me a way to do that.
Here’s what I learned from my dad. When it comes to the end of our lives, we have more options than we think. We can choose intention over fear. We do not have to wait around for laws to change, or for permission from our doctors to die gracefully. We can choose VSED, even if we’re not three days away from death like my mother, but a couple of weeks away. We can take death by the hand and live with it peacefully as we say our goodbyes. We ought to take advantage of every service hospice has to offer. Maybe by the time we need hospice and palliative care, they will be fully funded, staffed, and available to every person in the country. “I’m so proud of you, Dad,” I said more than once. “You are a trailblazer.” I told him he was brave. I told him how much I loved him. I dampened his shirtfront with my tears while he patted my back. I told him his story might be one step towards saving the world.
 Journal of Clinical Oncology http://ascopubs.org/doi/full/10.1200/JCO.2016.68.9257
 Brown, Karen. Not the Good Death We Were Promised. New York Times; Jan. 6, 2018. https://www.nytimes.com/2018/01/06/opinion/sunday/hospice-good-death.html
Robin, what an eye opening for me to learn how to provide love and precious wishes of the dying. My children do not like to hear about my dying, which I can relate with my own parents. Knowing how some dying people prepare their love one about one’s dying wishes; encourages me to do the same for them. Thank you for sharing this article. Rose Marie Sullivan
WOW and THANK YOU, Robin, for sharing so much, so poignantly, with such thoughtful articulation … all “spot on” as my precious father used to say, before we lost him in a decade-plus-long, life-sucking journey with Alzheimer’s. His included 8 years of institutionalized long-term care, all things dictated by his bumbling PCP, supplemented by my mother’s never-ending, daily hands-on care and stoic advocacy, which nearly took her life, as well. Your bottom line is 100% true: so very much needs to change … starting in my world by sharing this with my 81 year-old mother, so she’ll perhaps understand she truly has more agency over her own end-of-life choices than experience led her to believe. Gratitude and blessings to you and yours …
H Robin This is an incredibly beautiful and well written article. I think often about my own parent’s passing within ten months of each other, both with hospice. You addressed the end of life questions head on, and I appreciate the honesty of your work. My condolences on the loss of your parents.
Thank you for sharing this story. I am a hospice volunteer here in Maine. This link was forwarded to us by our Hospice Coordinator. We recently viewed a documentary at one of our Hospice Volunteer monthly meetings which also dealt with this subject. Both of my parents went rather quickly, one 2 weeks after a car accident and the other within 24 hours of being sick so I never had to go through this with them. This is definitely a conversation every family should have.
This is a conversation that every family should be having well before the last chapter.
What struck me… “The purpose of hospice is to ease the passage to death, not to euthanize.” Passage to death is a natural stage of being human, yet humans feel they must extend life beyond an individual’s “expiration date”….that really can spoil things and leave families bankrupt….emotionally and financially.
In 2017, I lost my mom at age 81 (just two days after my divorce) and her mom, my grandmother at age 102 a few months following.
Mom had dementia and early Alzheimer in nursing care and meme living on her own in an elderly apartment complex.
It’s such a complicated matter to honor a person’s wishes. Personally, I took to the woods, gardens and nature to manage my grief during life’s transitions.
I pray I will pass with ease, doing what I love most…. playing outdoors in nature and not some stuffy four walls of sterile environment with needles and life extending equipment.
But I also pray I take after my grandmother…. she was alert to the end.
Thank you for sharing such personal experiences. My heart is opened by your honesty.
Hi Robin just read your article. Loved reading about your whole experience with your parents. So special that you had all that time with them to talk and be together. My mom is 90 n living with us. She had a stroke n never got back her speech very well but we get in the car and drive all around town talking about old times and how things have changed n she loves it. Glad I found out about the article thanks. Barb Cyr ( see you at the next tennis match)
Beautifully written, insightful, and powerful. Thank you for spreading this important message!
Oh, Robin, this is so beautiful! Well written and researched and experienced. Lovely lovely lovely. Congrats!