It was New Year’s Eve, and my wife and I were visiting my father in his long-term care apartment. He had been cautiously wandering around, waiting for a visit, when we arrived, something he’d been doing since my mom had died a year ago. He looked frail. The “surprise question” occurred to me: Would I be surprised if he passed away in the next year?
No. I wouldn’t.
After we’d spent some time together, I asked his wishes for the coming year.
“I don’t know,” he replied. “I’m 101 years old. I was married nearly 70 years and have finished my life. Marcel, I am very much afraid of dying. Will you ensure that I don’t suffer and that dying won’t take too long?”
I promised him I would try.
The second week of January, I received a call that my father had fallen and was in pain. He had no fracture, but he insisted he did not want to get up anymore. I drove the 120 km to his home, thinking about all of the possible scenarios. My first thought was to get him on his feet again, with enough analgesics to overcome his fear of falling. As a geriatricianson, I had always tried to keep my parents active and felt proud that they had enjoyed so many years together this way.
But would such encouragement fit the situation my dad was in now? He’d asked me to make sure dying didn’t take too long. Was it already time to consider death by palliative sedation? I felt uncertain. To qualify, he needed a symptom that could not otherwise be helped, and death had to be expected within two weeks.
When I arrived at his bedside, he repeated, “I don’t want to get up anymore,” and again, he asked me to help alleviate his fear of dying. I had to honour his heartbreaking request for a peaceful death. With a leaden soul, I went to the doctor on call — luckily his own physician — and asked for his assistance in ensuring a peaceful death. We discussed all options, acknowledging my father’s increasing frailty, despair and anxiety, and we agreed to start acute palliative sedation with midazolam, adding morphine according to the Dutch national protocol. I watched as the doctor prepared the equipment, feeling reassured by his calm professional acts.
My father could not understand the plan himself, but after an hour or so he woke for a few seconds and, with a frail smile, said goodbye to my sisters and me. We made a schedule for staying with him and I took the first turn. I sat next to him for two hours, and just after his second dose of morphine, he stopped breathing and passed peacefully away, just as he had wished. Sadness and relief turned to warm gratitude in my heart. Life had given us a sensitive and wise physician who enabled us to overcome what my dad and I had feared most.
***
In December of the same year, my 86-year-old father-in-law asked me to come to Antwerp and talk to him about the options for assisted dying. He had metastatic prostate cancer and had not recovered over six weeks of hospital care. He was bedridden with a toe infection and painful pressure sores. My reflex, again, was to involve geriatricians and try to get him on his feet. However, my father-in-law, an engineer by profession, had decided it was time to turn off his engine after losing hope for sufficient recovery. My wife and I explained to him what medical assistance in dying and palliative sedation could look like, as both are allowed under certain conditions in Belgium.
Without hesitation, he chose medical assistance in dying. He was very satisfied with his life, having experienced war, liberation, marriage, births, retirement and nice family holidays. In line with his story of life, he did not want to deteriorate further and end his life in pain and misery. We kept silent while he wrote his last will, then thanked us for everything and suggested we should now watch the Belgium versus Morocco World Cup soccer match.
When the game ended, saying goodbye was hard. We looked into his eyes, still bright, and shook his hands, still strong. We knew it was the last time. But his calm smile wordlessly assured me it was time to turn off my own geriatrician’s inclination to pursue mobility and functional improvement. Death was made possible within a week, and after ensuring that all requirements were met and speaking to each family member, his oncologist carried out the procedure carefully in the presence of his children.
***
Just two weeks later, our Spanish water dog, Ticho, made me reflect again on what’s needed most at the end of a long life. For 16 years, Ticho had been my much-loved companion and daily running mate. I had begun to dream he might become the world’s oldest water dog. However, his sad eyes now showed me that his life’s end was close, also evidenced by having nearly all possible geriatric syndromes: slow gait, repeated falls, sarcopenia, cataract, dementia, intermittent incontinence and heart failure.
Still, he came with me on short walks until, one day, he became short of breath, started whimpering and did not want me to leave him alone. Patting calmed him a bit, but I realized we needed to help him die peacefully instead of trying to mobilize him again. Though not comparable to the last days of my dad and father-in-law, there were echoes.
Our three adult kids rightly arranged a family meeting, as Ticho was their sweet teddy bear. We agreed to consult a veterinarian and ask for help with a good farewell. Next morning, the vet agreed with assisting dying. She said Ticho was the oldest dog she had seen so far, and she reassured us that it was the best decision we could make. Again, I felt very thankful for this professional and compassionate help. Ticho died peacefully after sleep induction and, together, my son and I buried him in our garden.
***
Strangely, although death in old age is as natural as birth is for babies, pediatricians seem much more involved in deliveries than geriatricians are in dying. These three encounters with death in my life made me feel I had fallen short so far as a doctor, having undervalued assisting dying at old age. How to guide people to a better end of life was largely left out of my training as a geriatrician. Like pediatricians, geriatricians prefer to embrace life. In geriatric practice and research, we tend to reach for the holy grail of recovery by improving functional performance and autonomy to enhance well-being for frail older people, rather than focusing on facilitating their well-being over their last days. In this tradition, I practised hospital-based comprehensive geriatric assessment and integrated care management, as this had proven effective in giving older people a better chance of discharge to their own homes.
In my research, I had steered a straight line toward longevity and improving autonomy, in accordance with the dominant culture in society and medicine. I had excluded older people with short life expectancies from our intervention trials and did not adapt outcomes to this stage of life. Even for our recently updated Dutch handbook on geriatrics, we did not describe death or dying in any detail. I served many older people in their last days and hours, but did so with limited experience, few professional guidelines and little legal leeway.
Now, having been helped so compassionately with the deaths of three beings close to me, I realize how rewarding it can be to switch clinical gears from recovery-directed management to dying well, and to do so just in time. Older people can show and tell us when they arrive at this turning point and are ready for ending life. I hope other physicians will realize, as I have, how important it is to allow death into a conversation, even a care plan, and to be adequately trained to do so. Perhaps we also need our own turning points as physicians to get ready for the delicate responsibility of compassionate and professional assistance in personalizing good death in old age.
Julie McFadden, a hospice nurse in California. McFadden has spoken publicly about end of life care as she tries to educate people about how death with dignity takes place.
Many people might not like talking about end-of-life care or death until they’re faced with it themselves, but this hospice nurse wants to remove the taboo from the topic and educate people instead.
As an intensive care unit (ICU) nurse for over a decade, Julie McFadden, 40, focused on keeping patients alive, but when she made the switch to hospice care eight years ago, her attention turned towards making people feel comfortable as they neared the end.
McFadden, from California, regularly talks about the realities of hospice care, and what happens when a patient opts for medical aid while dying, on social media. She told Newsweek: “My main point is to make everyone a little less afraid of death. I want to change the way we look at death and dying.”
Medical aid in dying (also referred to as death with dignity, physician-assisted death, and aid in dying) is the prescribing of life-ending medication to terminally ill adults with less than six months to live, who are mentally and physically capable of ingesting the medication independently.
At present, only 10 states and the District of Columbia permit this process, but there is growing support elsewhere. A survey of over 1,000 people in 2023 by Susquehanna Polling and Research concluded that 79 percent of people with a disability agree that medical aid in dying should be legal for terminally ill adults who wish to die peacefully.
States where it’s permitted include Colorado, California, Washington, Hawaii, Maine, Montana, Oregon, and Vermont. Legislation is also being considered in Massachusetts, New York and Pennsylvania.
How the End of Life Drug Is Administered
As a hospice nurse in California, where a bill was passed to permit death with dignity in 2015, and became effective from June 2016, McFadden has assisted many patients who wanted to die on their terms.
She believes that there is real beauty in someone being able to have full autonomy over their death and choosing when they go, but she knows it’s a polarizing issue.
“People have to remember that not everyone has the same beliefs and I think it’s a beautiful thing that someone gets to have control over,” McFadden told Newsweek. “It’s powerful to witness someone be so alert, say goodbye to their loved ones, have their loved ones watch them take this drink and then die, but still be willing to be there to support them.
“I think most people in the U.S. have no idea that this law even exists, and even when I give very descriptive explanations of what the law is, what it means, what the criteria is, there’s still people who think I’m just overdosing patients with morphine.”
In order to acquire the medication, an individual’s request must be approved by two doctors, they have to undergo a psychological evaluation to ensure they aren’t suicidal, and doctors have to confirm that the person is capable of making their own decisions. Patients with certain conditions do not qualify, including those with dementia.
If approved, the person must take the medication themselves, and they can have family, friends, and hospice staff present if they wish.
Since June 2016, in California 3,766 death with dignity prescriptions have been written, and 2,422 deaths registered. To protect the confidentiality of any individual who makes this decision, death certificates usually note an underlying illness as the cause of death.
McFadden continued: “There are a few drugs mixed in, it’s taken all at once and the initial drugs kick in very quickly, within three to seven minutes. This person who ingested this drug will fall asleep or basically go unconscious. I say fall asleep just so people can picture what it looks like, but they’re unconscious.
“Then, the body is digesting and taking in the rest of the drugs that are also in that mixture, which will eventually stop the heart. It’s a general sedative and then they take two different cardiac drugs to stop the heart.
“They have a change in skin color and changes to their breathing, in what we call the actively dying phase, which is the last phase of life.”
Julie McFadden pictured, a hospice nurse in California. McFadden spent several years as an ICU nurse before going into hospice care in 2015.
People Have A Lot of Misconceptions
Regardless of whether you’re in a state that permits physician-assisted death or not, dying isn’t regularly talked about in a positive way.
One of the reasons why McFadden wants to have a more open conversation about it is to remove any prior misconceptions that people might have and educate them on what really happens.
“I have not seen anyone show signs of pain, but people are always concerned about that,” she said. “In general, if you’ve done this for a long time, if you’ve been in the healthcare system and work as a nurse or by someone’s bedside, you know what a body in pain looks like, it’s very obvious.
“A person who is unconscious and can’t verbally say they’re in pain will show you with their body language. Most people that have taken this medication who I have witnessed did not show those signs. I witness it day in, day out, but it’s pretty miraculous to see how our bodies, without even trying, know how to die. They’re built to do it.
“People get really angry and think I’m trying to hurt people. I always want to educate people around this topic, because the main thing people don’t want is for their loved ones to suffer at the end of life.”
As an ICU nurse formerly, McFadden explained to Newsweek that she was trained to keep patients alive, and they “didn’t have conversations about death early enough.” Despite patients being near death, they were kept alive through machinery for weeks or months, before ultimately dying on the ward.
Many of the country’s biggest medical associations are conflicted by death with dignity, with some choosing to endorse it, and others speaking against it. The American Public Health Association, and the American Medical Student Association are among the bodies to endorse it, but it has been publicly opposed by the American Medical Association and the American College of Physicians.
Hospice nurse Julie McFadden, 40, from California, has been discussing death with dignity. Death with dignity is permitted in California, so McFadden has shared her experiences of helping patients go through that process.
Talking Openly About Death
In 2021, McFadden set up her TikTok account (@hospicenursejulie) to speak openly with her followers about death and answer any questions people might have. Many of her videos have gone viral with millions of views, and while she does get a lot of positive feedback, there is also plenty of negativity.
There are people who wholly disagree with her advocacy for death with dignity as they claim she is playing God, or that she’s promoting suicide. But by having an open conversation, the 40-year-old hopes to make people less fearful of dying.
Speaking to Newsweek, she said: “Most of my audience is general public, that’s why I don’t talk like I’m speaking to other nurses or physicians. I talk like I’m speaking to my families who I talk to in everyday life. I think death just isn’t talked about, or it’s not explained well.
“I’m seeing so many times that people who are willing to have difficult conversations about their own death, who are willing to say they’re afraid to die, those patients who were willing to ask me those things and talk to me about death, had a much more peaceful death.”
A man from the home care agency calls on a Monday morning. “The caregivers are complaining. It’s too hard to transport Sara, to move her from the bed to the wheelchair and onto the stairlift. You need a lift or some other assistive device.”
A rush of sadness settles into my body. The end has arrived. “Sara is leaving on Friday,” I say, “Can we hold out till then?”
“Oh,” he says, and pauses, “I’m so sorry to hear this.”
My partner, Sara Flint Greenberg, was nearing the end of her nine-month journey through amyotrophic lateral sclerosis, more commonly known as ALS or Lou Gehrig’s disease, and she would take her life on Friday.
There is nothing more we could do. Her body has been ravaged by this devastating disease and she has been crystal clear, from the beginning, that she would leave when she can no longer take care of herself.
There are steps to the end of this journey.
Later that Monday morning, Sara speaks with a doctor, answering some required questions. Does she have less than six months to live? Is she mentally capable of making the decision to end her life? Can she self-administer the medication? Luckily, the session is short. Sara spends much of her day on a machine which helps her to breathe. Too much talking leaves her gasping.
On Wednesday morning Sara speaks with a second doctor who agrees that she qualifies to receive medications that assist in dying under the requirements of the California End of Life Option Act. The medication that will allow Sara to leave will be ready on Friday.
On Wednesday afternoon we celebrate our wedding. Sara and I marry in the late November light of our living room. I am not strongly attached to marriage, but as the day of Sara’s passing drew closer, I felt an overwhelming need to express the beauty of our love in ceremony.
The temporary chuppah is held over our heads by Sara’s sons Aaron and Jacob, our friend Audrey and a caregiver. We have found an independent rabbi to marry us because I am not Jewish. The rabbi is adorable in her Converse sneakers, covered with stars, as she takes us through this bittersweet ceremony. The ceremony is short because Sara is exhausted. It is her last gift to us, her family.
On Friday morning, our friend Margaret arrives from New York, kisses Sara on the cheek and tells her she loves her. It is all anyone can do. Audrey is in the kitchen. She has been with us for days, helping us through.
Later in the morning, a rabbi from our synagogue arrives to help us say goodbye to Sara. Margaret and Audrey go downstairs to wait. They sit, mostly silent and sometimes hold hands. The room feels heavy. They can hear Sara breathing above them, but they know she will not be there for long. It is one of the most reverent acts of love: to witness in silence the death of another.
At noon, Sara takes a pill to prevent nausea and vomiting when she takes the medication that will end her life. I sit beside her on the couch, Aaron is at her feet and Jacob is across from her. The rabbi is just beyond our circle as he begins to guide us through our final words. Everything is said on the edge of tears. We listen closely to hear our soft voices.
Sara regrets, deeply, that she will never see her grandchildren. She will not see her sons grow further into their lives or settle down with partners and start families. She gathers her breath and questions them closely because this is her last chance. She wants to know what their futures looks like because she will not be there.
There are apologies because anything left to be said has to be said. Death demands it. We make promises because who would say no? Sara would do anything for her sons and I promise to do the same. We celebrate Sara’s bravery. She left a longtime marriage, late in life, and jumped into love with me. And the bravery she shows today in making this choice.
The rabbi asks Sara where we can find her after she’s gone. “Walking in these hills,” she says, of the land surrounding our home where she once walked every day. She is now struggling to breathe and is silent. We are left with silence and the presence of love. We will carry this love everywhere we go.
It is almost an hour after Sara took the anti-nausea pill. She must take the medication now or wait for another day. The hospice nurse has not yet arrived. We call our hospice provider. They tell us to mix the medication with apple juice and give Sara sorbet because the taste can burn her throat. Sara reaches for the medication with both hands. She is ready to leave.
As the medication moves through her body, she prays in Hebrew: “HaShem Sheli, HaShem Sheli, ya’azor li” (“My God, my God, help me”). She recites the Shema, a centerpiece of prayer services in Judaism. As she draws closer to leaving, her last words are “Thank you, thank you,” a beautiful sentiment and a sign, I hope, that she is at peace.
Sara slides slowly down the couch, her cheek resting against the back of my hand. I feel life in her body, but after half an hour I am not sure. The hospice nurse has arrived. I ask him if she has passed. No, she is still here. Another half hour and I ask again. He checks her pulse. She has left.
Since the End of Life Choice Act became law, Dr Kees Lodder has been involved in assisted dying requests. Here, he explains to Alex Casey what the process entails, and what he has learned along the way.
As told to Alex Casey
People always assume it must be depressing to work in death and dying, but I’ve found it to be the most rewarding aspect of medicine to work in. You can alleviate so much suffering for someone, not just physically but also emotionally and spiritually.
I worked for over two decades as a GP before moving into palliative care in both hospitals and hospices. More recently, I’ve been assessing assisted dying requests. I’m very interested in helping people have a good death, and find it fascinating that it remains one of the biggest taboos out there.
When the End of Life Choice Act became law in 2021, I immediately went through the training programme to assess requests. Between 1 April 2022 and 31 March 2023, 328 people completed the process to have an assisted death.
Very few people know what the process actually entails. To begin, any patient can ring the Ministry of Health number (0800 223 852) and speak to one of three excellent and friendly nurses. They will collect all the information, and send it on for a first opinion assessment. The first doctor is called an attending medical practitioner (AMP), who will then contact the patient and write an extensive report on whether they’re eligible or not eligible.
The eligibility criteria is very strict. You need to be 18 or older in New Zealand. You need to be a New Zealand citizen, or a permanent resident. You need to be in an advanced state of irreversible decline in your physical capacity, with less than six months to live. You need to be experiencing unbearable suffering that cannot be released in a tolerable manner, and you need to express your wishes to die free of pressure from anybody else. It’s also crucial that you are able to process all the information and be of sound mind to make the decision.
If the first doctor has decided that you are eligible to continue through the process, you will then see the second doctor. They are referred to as an IMP, or independent medical practitioner, which is what I do. We will talk to your specialists, your GP and hospice staff, and look through all your files to ascertain that you have less than six months to live. It is a very thorough and rigorous process – of those who have applied so far, 16% were deemed ineligible with the first opinion, and a further 3.5% by the second opinion.
I always meet with patients face-to-face, ideally with as much of their whānau present as possible. After I introduce myself and tell them a bit about my background, I always ask them the same, simple, open question: “How are you coping right now?”
From there, it becomes really easy to have an open conversation. I’m always fascinated by what people think will happen when they die. People who say they are not religious at all will come back with the most detailed images of what they think the afterlife looks like. A number of people have told about their vivid and reassuring near-death experiences. We talk about who they want to be there when they die, who they want to remove their body and after how long, and what they want for their funeral. There’s often even room for a few jokes.
After the two assessments are done, your case goes to the registrar to be signed off, at which point you set up an appointment for your assisted death within the next six months. We tell the patients that the whole assessment process could take up to six weeks but it can be done faster depending on the availability of the AMP and IMP. The specific medication can only be dispensed from two pharmacies in the country, and consists of three steps. The first drug is to make you go to sleep, the second is a body relaxant, and then the third stops your heart. I always emphasise that it is a very peaceful process that only takes a few minutes.
What I really find interesting is that those who are seeking out an assisted death often have very little fear of dying. The difference in attitude between people that have come to terms with the fact that they’re dying, compared to people who haven’t ever thought about their own death before, is huge. Research also shows that those who have supported their loved one in the decision to have an assisted death experience a less complex grief process, which makes sense given how much conversation, planning and support there is.
There is definitely a cultural change happening when it comes to death, but there is still a lot more educating to be done. A lot of people don’t know what the process entails, or that they can start it without their GP or specialist. There are still many conscientious objectors in medicine that are opposed to assisted dying, including Hospice New Zealand, certain aged care facilities and individual GPs. My hope is that, one day, all our residential care facilities will accept assisted dying to take place in their premises, since this is the place that so many people call their home.
Even if assisted dying isn’t for you, there is a huge advantage in preparing better for our own deaths and the deaths of our nearest and dearest. We will all lose loved ones, friends and whānau. So by being able to talk about it and having an increased awareness about it, we can be much more accepting of it. I’ve always said that having a plan around your death is the best gift you can give to your family. It’s something we’re all going to face, so why keep your head in the sand until it’s too late?
What counts as a good reason to die? When does a person’s desire to die make sense and when does it not? When should we allow a person to hasten her own death? There is a lot of disagreement about questions like these. Some of us think that death is something no one should ever want for themselves—wouldn’t that be suicide?—and that we should hold on to life for as long as possible, even in the face of severe illness and suffering. Others think a person can reasonably want to die when it is the only feasible way to end severe suffering or to prevent severe suffering that is very likely.
Some think such questions are simply misplaced: anyone of sound mind should be able to choose when she dies, since it’s her life to live or not. But should we—may we—ever seek to die as a way of shaping the narrative of our life, choosing a time and a place that marks our lives as complete? Faith Sommerfield—who died by her own choosing at a Swiss end-of-life clinic—thought that we should. Her story cuts to the core of our ideas about the value of life and the conditions under which death looks reasonable, where wanting to die is understandable. It raises difficult questions about the authority we should have over our own lives and how they end, the importance of living a life in accordance with our plans for it, the considerations we make concerning others who are affected, and about what it is to die well.
Faith died by voluntary euthanasia at Pegasos, one of several Swiss clinics that provide euthanasia for nonresidents, on September 27th, 2022. She was 82 years old. Prior to her death, she had what most of us would regard as a good life—even, viewed objectively, an enviable one. She had children and grandchildren; she had friends; she lived in a spacious apartment in Greenwich, Connecticut. She was highly educated—it’s said that she spoke French like a native Parisian—active in her community, and well-off. For her age, she was healthy and relatively active. Sure, she had some mostly minor aches and pains. She’d had a hip replacement in the past and also bilateral knee replacements. She wasn’t as steady on her feet or as active as she wanted to be, but she seemed to cope. At least on the surface, she seemed happy and fulfilled. Given the evident fullness of her life, it might not be immediately apparent why she would want to orchestrate her own death.
But she did want a death of her own design. Months in advance, she wrote to Pegasos to request their help. Pegasos works some with Swiss clients, but also with people from other countries who are seeking end-of-life interventions but can’t get what they want at home. It’s legal in Switzerland, though still a bit controversial, for non-residents to access medical aid-in-dying (MAiD) or, as they call it, voluntary assisted dying (VAD), through clinics like Pegasos.
In her letter, Faith described her life history and her reasons for wanting to die. “My life,” she wrote, “according to my personal criteria, is completed.” What did that mean? What criteria were those? Faith explained that she had done the things she’d set out to do in her life, fulfilling the purposes she had set for herself. She seemed to regard her voluntary, chosen death as “celebratory,” the culmination of a life well-lived—or at least, lived as well as she could.
Why Switzerland? MAiD is legal in 10 states in the US plus the District of Columbia. Oregon was the first, in 1997, followed by Washington; New Mexico was the most recent state to legalize it. But Faith lived in Connecticut, which despite considerable legislative activity, hasn’t legalized MAiD. You might think she could simply have traveled to another state, like Oregon or Vermont, but that wouldn’t have worked, since until recently, all of the places in the US that had legalized MAiD imposed a residency requirement. That has changed in Oregon as the result of a lawsuit claiming that the residency requirement in the Oregon Death with Dignity Act was unconstitutional, an action which was soon followed by Vermont; it is possible that as MAiD becomes legal in other states, residency requirements won’t be built in.
That still wouldn’t have been much use to Faith, however. All of the jurisdictions that permit MAiD in the US also require that the recipient have a terminal illness—something like cancer or amyotrophic lateral sclerosis (ALS)—that makes it likely that they’ll die within six months. Faith had some chronic pain because of arthritis in her spine, one of the knee replacements that went bad, and a mild heart condition. But none of these things was likely to kill her any time soon.
That’s why she went to Switzerland. Multiple European countries permit (or will soon permit) aid in dying, including the Netherlands, Belgium, Luxembourg, Germany, Austria, Italy, and Spain, in addition to Switzerland, as well as Canada, New Zealand, and Australia. Some of these places allow aid in dying for people who do not have a terminal illness. The Netherlands requires a person to be suffering unbearably and intractably from some illness, though it could be one that isn’t necessarily life-threatening, like fibromyalgia, or even a chronic psychiatric condition, like serious refractory depression. The Netherlands has also considered extending aid in dying to people who are simply “tired of life.” Belgium already explicitly allows aid in dying for that reason. Switzerland is perhaps the most liberal jurisdiction of all, since it has no specific requirements about when it’s permissible to help another person die. It’s simply not a crime in Switzerland to help another person end her life, as long as it is done in good faith and without the prospect of significant personal benefit. That’s why Faith went there.
There are other differences with the US. Canada, Switzerland, and other European countries that permit MAiD all allow both physician-assisted suicide and voluntary euthanasia; in the US, only physician-assisted but self-administered dying is allowed. All 11 US jurisdictions require a person to take the lethal medications—often a compound of as many as five different drugs prepared by a pharmacy—on their own; they must swallow the liquid, or push the plunger to put it through their feeding tube, or in a newer form of administration, push the plunger on a rectal catheter. Voluntary euthanasia, on the other hand, means that someone else administers the drugs, often intravenously. In places that allow both approaches, true of most jurisdictions outside the US, the vast majority of people prefer IV administration (more than 99 percent in Canada), because it is faster, more certain, much less likely to have side effects.
That’s what Faith wanted, something fast, easy, and foolproof. Pegasos reviewed Faith’s case. There were some interviews. But, ultimately, they agreed; she paid the hefty fee and made her appointment.
In July, a few months before her trip to Switzerland, we met with Faith. Both of us (BMK and MPB) are trained in philosophy and have written about end-of-life ethics; one of us, BMK, is a practicing psychiatrist too. We wanted to get a sense from Faith of how she thought about her decision. But before we met there were some conditions that had to be hashed out. Faith was nervous. She wanted assurances that we wouldn’t use the interview to try to dissuade her. She also wanted us to promise that we wouldn’t use a psychiatric lens to pry up something—a hidden history of mental illness, mainly—that would make her look incompetent and preclude her from carrying out her plan. She wanted to see the list of questions ahead of time. We agreed.
We met by Zoom. We found Faith, tastefully dressed, wearing just the right amount of jewelry, seated in her impeccably decorated apartment. We started with the big question: Why? She said she thought that we all get to choose the purpose of our lives: “Life is such an incredible gift. In so many ways, we are able to shape our own lives, sometimes our own destinies. It’s our responsibility, depending on who and how we want to be, to give our lives as much meaning as possible.”
Faith had admittedly done a lot with her life: she graduated from Smith College and went on to become a fashion editor for Harper’s Bazaar, a public relations director, and a successful interior designer. She married at 25, already afraid at that time that she would become “an old spinster,” but divorced within a year; she remarried shortly to a man 12 years her senior. They raised two children, moving from New York to Greenwich when they were still young. One of her children later described this relationship as difficult, indeed “horrible.” Her husband eventually developed Parkinson’s, and after he became symptomatic, he was removed to an alternative living arrangement. Faith met another man whom she would describe as her “life partner,” although they were only together for six years before he died. After his death, she remained close with his two children, recognizing them as her “chosen family.” After he died, Faith met someone she jokingly called “Mr. Wednesday Saturday” after the days they would spend together; he remained with her until the end of her life.
Faith had inherited a substantial sum of money from her parents, and her mother had given her one directive about what to do with it: “Start a foundation.” So that’s what Faith did. She began to build an organization devoted to end-of-life issues: the Completed Life Initiative, or “CLI” for short, something she would come to see as her crowning achievement. CLI came into being in 2019, just before the 2020 COVID-19 lockdown, so its work has been conducted largely online. Nevertheless, it has assembled a board of academics, physicians, and attorneys who are experts in end-of-life issues (including one of us, MPB).
CLI has a talented staff and connections with other end-of-life organizations. It holds an ongoing series of talks, panels, forums, extended conferences, and other programs. These draw a vibrant online audience, including other people who are exploring how best to approach their own deaths. The goal of CLI, its website says, is to promote new ways of thinking about mortality—to encourage others to see death not merely as a defeat at the hands of some terminal illness, but as a triumph, if it occurs at a time and in a manner of your choosing, in response to the sense that your life has served its purpose. This is just what Faith chose for herself. Seeing this organization bloom was the culmination of her life, she insisted—the completing factor, the goal toward which she had been working all along.
This was quite an achievement, we thought. Even so, we couldn’t help but wonder, why now? “Why not now?” Faith responded. Okay, but why not wait a little? Faith scoffed: “There’s always going to be something that you wish you had waited for. … You can’t help that. I could postpone, but I don’t think it’s possible in any life to complete every thought, wish, desire, activity, or whatever. I can be sorry about, I am sorry about, a lot of things that I haven’t been able to complete the way I hoped. But I can radically accept the fact that I’m not going to be able to do them.”
Faith worried some about pain and suffering. As she described her thinking, part of having a good death was avoiding pain and discomfort that didn’t serve a purpose—they could be borne for a good reason, but it didn’t make sense otherwise. “I’d always thought about suffering at the end of life. I had a lot of thoughts about the non-necessity of suffering at the end of life. I used to get very upset when I read about what I saw as terrible deaths.”
Even more important than suffering, however, was the risk that she would not be able to function in the ways she was used to doing. She wanted to avoid a scenario in which “I’m living a life that doesn’t serve me and which is without purpose. Other people might be perfectly happy to lie in a bed for years and years and have their needs met. If people are able to do that, and that’s their desire, that’s fine.”
Faith placed great stock in her appearance and her fitness, and was vexed by the limitations of age. Perhaps there was some vanity in this—even in the days before her death, she was abstemious with food and drink, worried that she would gain weight. Her personal chef prepared dinners consisting mostly of broccoli, and only three weeks before her trip to Switzerland, she declined to have a glass of wine during one of the biweekly Zoom-dinners she’d been having with one of us (MPB) because she didn’t want to gain weight. (Faith was 5’2” and did not allow her weight to exceed 96 pounds.) But more important to her thinking was the possibility that something catastrophic would happen. “I am troubled by the fact that I fall a lot,” she said. “I don’t feel comfortable being outside on the street or even in lots of people’s houses and for me that’s a really big deal.” She was, she said, “in terror of being just one fall away from not being able to have the death I desire.”
It’s easy to underestimate how much the risk of falling mattered to Faith. One close associate—another bioethicist—who attended a farewell luncheon held just before her trip to Switzerland related that, after the lunch, Faith had almost fallen down the six stone stairs outside the restaurant. He managed to catch her before she tumbled, and in that moment appreciated, for the first time, what a devastating effect a fall could have had and how it would have changed everything for her. Faith, though, knew that falls are a major cause of worsening disability in the elderly. She was determined to avoid that all-too-common scenario. There was, she said, “an enormous satisfaction in knowing that I don’t have to worry about what could hit me or what could happen to me or how I could suddenly not be capable of doing what I’m doing.”
Both of Faith’s biological children were particularly disturbed by Faith’s plan. They urged her to get a trainer to help with stability and strength and perhaps a nutritionist to eat a more balanced diet. They discussed whether mental illness was playing any role. Did she have OCD? Or an eating disorder? Why did she bring up the prospect of her own death so often, even with people who didn’t seem to want to hear about it? What about that early diagnosis of bipolar illness, for which she’d been treated by a psychiatrist for many years, and a suicide threat she’d made after the death of the man she’d recognized as her life partner? Faith described herself as a “control freak,” but mental illness was not the way Pegasos saw it when they reviewed her records. In the end, even her biological children, those most distressed, agreed that her final decision was made with a “relatively sound mind,” though they themselves resented the decision and the almost flippant way Faith let her family know: “I won’t be around in a year—what do you want from my apartment?”
For Faith, then, the decision to end her life seemed to depend on a simple calculus: the purpose of her life having been achieved, she merely needed to weigh the risk that something would happen to make her die badly—dependent, bed-ridden, unable to do things, in pain—against the value of a little bit more time. Life wasn’t bad for her; quite the opposite. But life wasn’t, she thought, something worth living in its own right, just for its own sake. And traditional pleasures, like time with family and friends, pursuing hobbies, experiencing beautiful things, didn’t matter additively: more of them wouldn’t make her life go better. At least, they wouldn’t matter enough to run the risk that things would go sideways. She recognized that by getting euthanasia she was giving something up. In a prerecorded lecture, delivered posthumously to CLI at its fall online conference, she said, “I don’t know, but I believe that I’m choosing to give up some good years of life. But life is only life if it is able to be celebrated and valued. The life of someone with terminal illness, cancer, ALS … I don’t know. If I continue to live, I’m really taking a chance. I don’t want to do that to myself.”
We made our own trip to Switzerland before Faith did. We had already planned to present a paper at a meeting of the International Association for Bioethics there, and that meeting happened to be in Basel, close to Pegasos. Faith offered to put us in touch with Pegasos so we could see the facility and find out about the procedures they use. After a flurry of emails, arrangements were made; the clinic’s director would pick us up at our hotel in Basel. The plan struck us as somewhat surreal. We would visit Pegasos and then head to a local Spanish restaurant for tapas, where our host had arranged for a private room so that we could have an unfettered conversation.
Both of us experienced a flurry of anxiety before he arrived: getting whisked away by someone we’d never met, whose profession was helping people die? Was that entirely safe? But first impressions were reassuring. The director arrived in an old Volvo station wagon—exactly the car you might expect—wearing a linen tunic and Birkenstocks (also what you might expect), bearded, brimming with energy and solicitous good cheer. Like a countercultural and less rotund Santa Claus, bearing strange gifts.
After a quick trip through the city, marked by lively conversation about the difference between Swiss and American democracy, we left the freeway, picking up a little back road that sidled up against a forested stretch of the Jurassic Hills. Then, after a few miles, to our dismay, our host turned away from those hills into what had been a small medieval town on the edge of Basel. We were now confronted with an aging industrial park. The road in was dominated by piles of asphalt to be melted down at the recycling facility just to the right. Pegasos itself was located in a converted textile factory, later transformed into a photographer’s studio. Next door was a body shop with the remains of old BMWs sitting out front; our host had done his best to dress up the setting by wrapping a few of the most unsightly hulks in silver tarps. Faith, we thought immediately, would hate this. It was a far cry from Greenwich.
Our host seemed to notice our disappointment. He explained that Pegasos had struggled to find a facility that would permit its work; not many landlords would tolerate an end-of-life clinic on their premises, after all. But he and his staff had made every effort to make the interior of the place appealing: there was soft lighting, comfortable chairs, soundproof panels on the walls, a nice stereo system, plenty of greenery. While we enjoyed a Swiss chocolate, the evening sun dipped through the windows overhead, and for a moment the place seemed serene. We looked at the organization’s blueprints for a much nicer facility tucked well away in the hills in precisely the setting you would want—plans that merely awaited a sufficiently generous donor to make them a reality.
But in the actual facility where Pegasos helped people end their lives, there were only two rooms: the waiting area in the front and a procedure room in the back. The area where deaths would take place was more spare, with a few chairs, some modest art on the walls, a stereo. There was a vaguely Buddhist picture hanging on the wall behind the bed, and the bed itself was a converted extra-wide hospital bed with the rails removed, so that family members, even pets, could be with the patient at their very last moments.
The director explained how the euthanasia—Faith had always insisted on calling it that—was usually performed. An IV would be started with normal saline and the lethal infusion, 15 grams of pentobarbital, would be hooked up in readiness. Under Swiss law, the client must initiate the lethal process themselves, which Faith would perform by turning a roller valve on the IV line to release the drug. Having the client perform this last act is seen as providing final assurance that it is what they really want. Family members may remain with the body as long as they wish, but are instructed not to touch the IV apparatus so that when the police and the coroner arrive—they are called immediately after the death—they will see that everything was done in accord with Swiss law.
At dinner in the little Spanish restaurant—surrounded by cases of Rioja, over trenchers of branzino—the director explained how Pegasos provided aid in dying. He acknowledged it was more liberal than other end-of-life groups, each of which has its own policies. Exit Switzerland (not to be confused with Exit International), refuses clients from outside Switzerland. Some groups are warier of providing aid in dying to people who were not seriously ill. But our host was, much like Faith, committed to the idea that anyone should be free to determine the time of their own death, regardless of whether they were medically ill, dying, old, in pain, provided that their thinking was still clear enough that they could make decisions for themselves. For him, it was a question of autonomy, and only a question of autonomy.
Pegasos requires clients to submit a biography—he showed us Faith’s, with her permission. Then, if they seemed to qualify, one of the physicians who worked with the organization would conduct an assessment. Sometimes this was in person, sometimes by videoconference; one of the psychiatrists involved was based in London. Just before the procedure, a physician would check in with them for a second time before the procedure, again largely to assess their ability to make decisions. Unless the patient was arriving by air ambulance, Pegasos required its clients to stay overnight in a hotel near the facility, so that the physician would be able to conduct a second assessment the night before the procedure. If the patient had second thoughts, this might be time to act on them—Faith had been assured that she could stop the process at any time she wanted. But as the director pointed out, second thoughts were almost always evident in advance. Patients who had come as far as Faith had were determined, ready, and resolute.
Faith herself did not have second thoughts—at least, not that she expressed in any way at all. But where did her resoluteness come from? It might strike some as odd that the achievement she saw as completing her life, thereby making it possible for her to die, was putting together an organization focused on precisely that idea—a sort of self-fulfilling prophecy. But Faith pointed out that CLI, like her own death, is just an expression of something she’d thought about for years: ending her life on her own terms was a lifelong goal. She had been an inaugural member of the Hemlock Society, and had talked with family and friends about her desire to control her own death for most of her life.
Of course, such dedication might itself be hard to fathom: how could she spend a life focused on dying, devoted to choosing the time and the method? Some early, formative, experiences suggest an answer. Faith related how, when she was in sixth grade, her younger sister’s best friend, then aged nine, died of cancer. A large tumor near the spine had already metastasized by the time it was discovered. Faith recalled that, back then, such deaths were drawn out and agonizing, and it was “devastating to watch this little child die. She was in pain, just wasting away.” Watching her “simply disappear” made Faith start to think about the difference between a good death and a bad death. She became determined to have a good one, as she defined it. This determination only deepened when she watched the long, slow declines of her own mother and grandmother.
Faith described how she discovered the metaphysical poets in college, and their preoccupation with death resonated with her own nascent interest. In his poem “Death Be Not Proud,” John Donne regarded death, in Faith’s interpretation, as a way of escaping the risk of sin:
Die not, poor Death, nor yet canst thou kill me.
From rest and sleep, which but thy pictures be,
Much pleasure; then from thee much more must flow,
And soonest our best men with thee do go,
Rest of their bones, and soul’s delivery.
It surely also mattered that Faith’s own first child had died shortly after birth, especially because of the lack of any acknowledgement of what had occurred. “The way they dealt with that at that time was to pretend it didn’t happen” Faith recalled. “My husband was instructed to go home and take everything out of the nursery. Three or four hours after the delivery I went home and … it didn’t happen.” This was so very unlike what Donne might have said. Faith seemed to have been angered by this silence her whole life, which is not a surprising reaction to such a momentous and awful event. Part of CLI’s purpose is to make it easier for all of us to talk about dying, and this may have appealed to Faith as a way of repairing that terrible silence.
Did she think about how her death would affect others? Certainly. For one thing, Faith believed that dying early was an ecologically responsible choice. “If my life is completed, I definitely don’t want to be hanging around taking up resources, taking up space on the planet, housing, food, all those things. There’s something inappropriate about being alive, just being alive, when you feel your life is complete.”
She also thought that her death would be a model. CLI’s announcement of her death says, “Faith intended that her choice serve as a model and inspiration for the expansion of individual autonomy in end of life decision-making.” Her hope was that her death would raise awareness, even help people think about death differently. “Over my lifelong study of death and dying, I came to believe that people were living too long … and [I] was determined to find a way to end suffering at the end of life and give people autonomy to die on their own terms—without pain and with dignity.”
She recognized that her approach wasn’t for everyone, though, and she wasn’t saying that others should hasten their own deaths simply because they were getting old, feeling achy, or able to do less than they used to. Although those things contributed to her sense that her life was complete, she regarded the “completed life” as a highly individual idea that “can only be described and realized by the person living it.”
What about her family and friends? What did they think? She worried about this. Of course, the people involved in CLI, to whom she had become close over the last three years, were supportive. The two children of her life partner, both involved in the administration of CLI, were supportive. But things were sometimes rocky elsewhere. She thought she’d done her best to put her relationships right: “Everyone would want to have the best, most perfect relationship with their spouses, their children, their families. But I have some relationships where I’ve accepted that … it’s not possible to repair the damage done. But I also consider that a positive, because I’ve accepted it. I’ve done everything I can and I can’t control other people.”
The biggest conflict was with her own biological daughter. As Faith saw things, her daughter didn’t want to acknowledge what she had set out to do. This was a source of some frustration, even anguish. “I have a difficult unresolved relationship with my daughter, who says to me, ‘I don’t want to hear you talk about suicide. I’ve listened to you talk about death all your life.’ I say, ‘I’ve never talked about suicide, and I’m not talking about suicide now.’ She says, ‘I don’t care what you call it, you’re talking about it, and I don’t want to hear it.’”
Faith’s daughter did acknowledge her mother’s plan in the end, but continued to regard it as premature and, therefore, wrong. At the funeral, she did not flinch from expressing her true feelings: “It’s difficult to stand here and try to make sense of what seems nonsensical. I think the best shot I have at an explanation is the words mom wrote in her very own obituary. … ‘She died peacefully, at the time of her choosing.’ When I get sad, mad, or confused about the fact that she chose to leave us, I recall those words.” Faith’s granddaughter then echoed this sentiment: “Her choice to leave us, as insane, confusing, and strange as it may be, was something I know that she was confident in. Her stubborn nature is something I inherited and for that reason I am able to understand, to an extent, why she made this decision.”
It’s important that Faith really didn’t think about her death as suicide. Sure, she would be killing herself, and suicide is a type of self-killing. But the main difference, in her mind, was the why: “When people commit suicide they are in desperate situations. They are living lives that torment them. They just can’t bear to be living. I am not attempting suicide. I am not taking my life. If suicide were defined differently, I might say I was. It’s just that the word, the connotations, are so unfortunate.”
What about God? Despite her name, you might imagine that Faith, a lifelong campaigner for euthanasia, was a dyed-in-the-wool atheist, rejecting traditional ideas about God and the afterlife. After all, many religious groups oppose medical aid-in-dying and euthanasia, so surely proponents of euthanasia oppose religion? Surprisingly, however, Faith was quite involved in church. She responded to the metaphysical poets, and though she had grown up with little religion, she identified a need in herself while she was in college, and started going to the chapel. She attended a major mainstream Protestant church in Greenwich for decades. She sang in the choir, took her kids to church while they lived with her, served on church committees, and she was a deacon for a time. She saw the church and God as sources of inspiration for her work. “I have a very close relationship with organized religion, and it’s grown over time. I started out with no religion. Nothing, absolutely nothing. I got religion when I went to college because I decided to go to chapel, since somebody told me that the chaplain was very good. He was interesting, smart, and young. It was just some kind of need that I had.”
Faith had been open about her plan in her church community, and saw that community as a source of support. She said, perhaps over-optimistically, “I’ve … discussed it with my minister, and my minister is perfectly fine with it.” Faith had organized talks in the church about end-of-life topics and her own views. She had lunch with her pastor, a few days before she left for Switzerland. She had arranged quite an elaborate funeral in that very church—all planned out ahead of time, of course. The service made no secret of the fact that she had wrought her own death.
Her spiritual beliefs were a source of courage for her. “I do believe in heaven but I have no idea what it’s like. We definitely go someplace because I believe I have a soul and the spirit of God that was planted inside me, which is eternal, so it has to have someplace to go. I don’t know, but I think it probably does make it easier to do this.”
She took the success of CLI itself as God-given. At the start, she had resources but no connections. Stubborn, bold, knowing no one in bioethics, she found out whose help she should enlist by cold-calling a lot of academics; she interpreted their support as a sign that “the spirit is moving.” It was, far from something God opposed, part of his plan for her, and through her all the rest of us: “God,” she thought, “had not intended us to suffer at the time of our deaths.”
This isn’t to say that everything was easy at the end. Faith and one of us (MPB) were in frequent communication—those Zoom-dinners and other conversations— in the months and weeks leading up to her departure for Switzerland. At times, Faith was quite distressed. She felt she had a great deal still to do, in closing out her life—saying goodbye to friends, emptying out her apartment, attending to her will and financial affairs—but had remarked frequently, literally for months, that she was “running out of time.” At certain points, she seemed to be ensnared in trivialities. She had stipulated in her will that none of her belongings could be thrown away, so that everything needed to be taken by family or donated to charity or recycled. But her last weeks found her pulling the metal spines out of pendaflex hanging files so that they could go into the recycling bin, fretting that there simply wasn’t enough time to do everything. Not the sort of thing you would think a person would be focused on, right before the end.
You might wonder: why not just delay? The director of Pegasos had told us that the organization would be happy to postpone Faith’s visit, for as long as she wanted, just as it did for any of its clients. All the pressure was coming from Faith herself. She saw herself as unable to back down from her decision, even a little, a bit like Ulysses lashed to the mast, minus the ropes. Perhaps she was simply afraid that something—a fall, a disabling illness—would prevent her from doing it if she waited even a little. Perhaps she was afraid that she would lose her resolve. Perhaps she was simply worried what others would think if she, a shining example of autonomy at the end of life, showed hesitation.
So, what should we make of all this? What should we make of her choice? Was it a good one? Was it made wisely and for good reasons, or made badly for bad reasons? Whether it was good or bad is very much in the eye of the beholder, depending on what one thinks about medical aid-in-dying or euthanasia in the first place. You might think it’s laudable that Faith wanted to exercise her autonomy over her whole life, including its end. But you could also think that there’s something wrong about wanting control for its own sake, especially over something most of us don’t control.
You could even, we suppose, think of Faith as obsessed. You could look at the childhood experience that shaped her desire, at the vicissitudes in her relationships, and think that it betrays something broken. But it’s possible, too, to admire her single-mindedness and determination, whatever their source. It is anyway an error to think that because we, even a psychiatrist, can tell a story about how someone came to want something—especially if that story is punctuated by trauma or some other salacious detail—that their wanting it is wrong or inauthentic. We all have such stories in our lives, after all.
You might think that Faith’s idea that her death was compatible with God’s plan for her—whether theologically tenable we cannot say—demonstrates an admirable devotion. But you could, instead, feel queasy about the fact that she seemed comforted by the thought of a heaven—for what if she was wrong, in the end, and left life sooner than she otherwise would have because eternal reward seemed to beckon?
You might think it’s understandable that Faith wanted to minimize the risk that she’d spend some portion of the end of her life unable to do many of the things she had once enjoyed or thought important, suffering only escalating pains and the burden of a body that is gradually deteriorating. But you could think, instead, that for some, maybe most people in that spot, unless things are really bad, it is possible to find other pleasures, to adapt to difficulties as they mount, and to learn to tolerate the pains. Or you could admire the realism she displayed, including her awareness that a single fall could change the course of her life for what she regarded as the very worst—everything her notion of a positive, cumulative end to a completed life was set against.
We feel tempted by all of these takes on what Faith did. Her death leaves us feeling ambivalent, not quite knowing what to think. It wasn’t easy to watch the story play out, despite our promise not to intercede. BMK had to struggle against psychiatry’s ingrained commitment to preventing suicide when it can; MPB—a bioethicist who has long argued for access to aid in dying—still held out hope that Faith might relent, or at least delay. They were friends, after all, and it was hard to see a friend go. Why, and why now, indeed?
At the funeral, Faith’s daughter summarized her mother’s lesson this way: “While I still grapple with the finality of it, and the moral and ethical pieces, of which there are many, I am learning each day that her sense of completion and accomplishment is a gift to us all. She granted us peace in knowing that she did not live in regret.”
We heard from those who had accompanied Faith to Switzerland that, once on the plane, her anxiety about running out of time had fallen away; she was described as “peaceful.” She was described that way, too, on the evening before the procedure at Pegasos, and the next day, when she was ready in bed with her family members around her. With the IV line in place and running normal saline, Pachelbel’s “Canon” playing in the background, she calmly turned the roller valve to release the lethal medication herself. Her last words, directed to those gathered at the bedside, were almost “I love you.” She died before she could speak the last word. But her intent was clear.
— In my work as a congregational rabbi I see people die in pain, needlessly
‘Dignity in Dying’ supporters gather to call for a change in the law to support assisted dying outside the Houses of Parliament in central London on October 22, 2021
By Rabbi Dr Jonathan Romain
As someone who passionately values the gift of life that we each have, why have I now become head of the campaign in Britain to legalise assisted dying, whereby a person obtains a prescription for life-ending medicine that they themselves take?
It is precisely because of my work as a congregational rabbi and many years of visiting hospitals and hospices, where I see people die in pain, despite the best efforts of medical staff.
They often beg doctors and relatives “Can’t you help me die in peace?”, but at present that is not legal. I see no merit in individuals being forced to live out their last days in misery if they want to avoid it.
In Ecclesiastes we are told that ‘There is a time to be born and a time to die’ (3.2). It is noticeable that it does not stipulate who chooses that moment.
Suicide is rightly discouraged in Judaism, but that assumes the person may otherwise live on for many years if not decades. Assisted dying is for those dying who wish to die well.
If we control all aspects of our life – where we live, what job we have, who we marry – why should we not determine when we leave it if we are facing a terminal illness?
A key factor for those wishing to die is the desire to avoid pain, but for others, it is the lack of control over their bodily functions or the unwelcome image of being sedated into a state of narcotic stupor.
Some might object that assisted dying means ‘playing God’ – but this ignores the fact that we frequently ‘play God’ – doing so every time we give a blood transfusion or provide a road accident victim with artificial limbs. Should we stop doing that? No more hip replacements or heart transplants?
We can believe in the sanctity of life – how precious it is – but that does not mean believing in the sanctity of suffering, or disregarding steps to avoid it. There is nothing holy about agony.
If terminally-ill patients do not wish to live out their last few weeks in pain, for what purpose should they be forced to do so, and in whose interest is it that life is prolonged?
There are strict safeguards being proposed to prevent any abuse. They include the stipulation that the person is terminally ill, is mentally competent and makes the request of their own free will.
In addition, there is a rigorous process for ensuring the above: it can only be initiated if requested by the person him/herself, and they must be assessed by two independent doctors to ensure that they are terminally ill and of sound mind.
On top of this, the person must have been fully informed of palliative care, hospices and other options, while they can change their mind at any time, right up to the last minute.
Meanwhile, the British Medical Association and almost all other Medical Royal Colleges have dropped their previous opposition to assisted dying. That is very significant.
Another persuasive factor is that we are in the fortunate position of knowing in advance what will be the likely effects of permitting assisted dying. This is thanks to the experiences in Oregon, which has the closest system to the legislation being proposed here.
Since it was introduced in 1997, several thousand dying patients per year enquire about assistance to die, but only around 0.4% of the overall deaths in a year opt for it. That is twenty-five years of hard evidence.
It indicates that many people wish to ‘know it’s there’ and have the emotional safety net of knowing they can resort to it if their situation makes life intolerable, but never find they reach that stage.
While many in the religious hierarchy still hold to the traditional opposition to assisted dying, there are a growing number of rabbis who now favour it.
At the same time, attitudes are changing within the general population too. A recent Populus poll revealed that 79% of those from religious backgrounds – defined as people who take their faith seriously enough to attend services at least once a month – said they supported the law being changed. Amongst Jews it was 83%.
If there is a right to die as well as possible, it means having the option of assisted dying, whether or not it is taken up.
It is also a matter of compassion – the compassion not to force other people who are suffering to keep on suffering if they reckon it is time to let go.
We need to tackle it for their sake. But who knows if we ourselves might one day need it?
Since 2002, the clinic run by the assisted dying organisation Dignitas in Switzerland has been chosen by more than 500 Britons to end their lives. Here we look at some of those Britons who made their final journey to the facility.
First UK citizens to die at Dignitas
In 2002, a 77-year-old man with terminal throat cancer became the first Briton to take his own life at the assisted suicide clinic in Switzerland.
The former docker Reg Crew was the first named British person to have publicly travelled to die at Dignitas, in January 2003. The 74-year-old had had motor neurone disease for more than four years.
Craig Ewert
A former university professor with motor neurone disease, Ewert, allowed his death at the clinic in 2006 to be filmed and later shown in Britain in a documentary. The 59-year-old American father of two, who had moved to the UK after taking early retirement, travelled there from his home in Harrogate, North Yorkshire.
‘Mrs Z’
The woman publicly referred to as “Mrs Z” was at the heart of a landmark court case to determine whether she could travel to Dignitas with the help of her husband of 45 years. The 66-year-old had an incurable brain condition called cerebellar ataxia.
In 2004, she went to the high court over attempts to prevent her from dying at Dignitas. Her local authority brought the case after learning of her plans.
A judge decided not to frustrate her wishes to die abroad and lifted a ban on her husband, also 66, taking her abroad, in the first case of its kind.
Mrs Z died in Zurich on 1 December 2004.
Daniel James
At 23, James, who had played rugby for England as a teenager, became the youngest Briton to die at the clinic in September 2008 after being paralysed from the chest down in a rugby training accident.
West Mercia police initially investigated his death but three months later the director of public prosecutions announced that no action would be taken against his parents as it was not in the public interest, “although there was sufficient evidence for a realistic prosecution”.
His parents said James, a tetraplegic, felt his body had become a prison and he lived in fear and loathing of his daily life. His death led to widespread debate as he did not have a life-threatening condition.
Sir Edward and Joan Downes
In 2009, one of Britain’s most respected conductors, Sir Edward Downes, and his wife, Joan, ended their lives together at the clinic. Edward, 85, who was knighted in 1991, was almost blind and Joan, 74, was his full-time carer. He had a long and distinguished career with the BBC Philharmonic and the Royal Opera House, and conducted the inaugural performance at Sydney Opera House. The couple’s children, Caractacus and Boudicca, said their parents had “died peacefully, and under circumstances of their own choosing”.
Robert and Jennifer Stokes
In 2003, Robert and Jennifer Stokes, from Leighton Buzzard, Bedfordshire, died in Switzerland after contacting Dignitas. Robert, 59, had epilepsy and Jennifer, 53, had diabetes and back problems. Both had depression but neither was terminally ill. Family members demanded that the clinic be closed down.
Peter and Penelope Duff
Peter and Penelope Duff were the first terminally ill British couple to have an assisted death in 2009. Before Christmas 2008, they invited guests for a drinks party in an elegant Georgian townhouse overlooking the city of Bath. Their guests did not know that both hosts – he was 80, and she was 70 – were terminally ill with cancer and that they were, in effect, saying goodbye. In February 2009 they died at the clinic.
