[A] friend recently lost his father to dementia, but not before witnessing a small miracle.
In his final days, despite having been non-verbal for more than two years, his father suddenly became fluent and conversational. He recognised relatives by name and regaled them with old tales, offering his grandchildren a brief, magical glimpse of the man he once was.
Even in the Netherlands, where assisted dying is well established, access by dementia sufferers is the subject of ongoing debate.
The only problem? He thought it was 1953.
Dementia is an insidious and peculiar disease. And it poses difficult questions about the nature of identity. What is it that makes us who we are? And at what point do we lose our sense of self?
As Victoria moves toward a scheme of assisted dying for the terminally ill, one of the recommended preconditions is a “sound mind”. As such, a parliamentary committee (invidiously tasked with an “inquiry into end of life choices”) has recommended dementia sufferers be excluded from the scheme.
On the face of it, this appears logical, as there are obvious risks in allowing others to decide what is tolerable for a patient. But is the potential for abuse a good enough reason to deny access to all dementia sufferers?
An alternative – which the committee does not support – is the provision of an advance directive. While still able to make decisions, we could outline future circumstances (such as the late stages of dementia) where we might consider our lives unbearable. Such measures have been in place in the Netherlands since 2002.
If an advance directive were allowed here, it could include tailored safeguards – such as the opinions of trusted family and friends – about the quality of our lives (in addition to the standard battery of medical tests).
But even in the Netherlands, where assisted dying is well established, access by dementia sufferers is the subject of ongoing debate. It remains an area of deep moral, ethical and practical complexity.
It is also one in which I have a personal stake – my father has advanced dementia.
Over the past three years, he has lost capacity for the things he once enjoyed – politics, gardening, and even freedom to leave the home unaided.
If an advance directive had been available before his illness, it is possible (if not likely) he would have opted out.
Yet my father might now be described as – what some cheerfully term – “happily demented”. He is usually in good spirits, enjoys the pleasures of food and family, and is physically active. By some measures, he might be more content than before his dementia.
Such circumstances are not isolated. In evidence to the parliamentary inquiry, one carer stated: “I know the man my husband used to be, and I know he would not want to be the man that he is today; however, he is happy as the man he is today … whose version do we hold with, or think is more valid?”
This question cannot be answered with certainty.
For example, in the later stages of dementia, we may not appreciate a film in the same way we do now. But we may find pleasure in the sight and sound of certain actors, or even the appearance of particular colours on the screen.
Still, we cannot know how the disease might manifest in individual cases. And there are risks in allowing dementia sufferers to be part of the scheme. But these risks must be weighed carefully against our right to make important choices about our lives.
Should the parliamentary committee’s recommendations be followed, my father will not face such a crucial decision. Whether there may be a small miracle near the end of his life, time will tell.
A nurse reveals how she became a ‘death doula’ and volunteers to help people ‘let go’ at the end of their life
Rebecca Green was devastated when she lost both of her parents before she turned 16, but she’s never been afraid of death
As told to Cynthia Lawrence
REBECCA Green, 46, is a nurse and lives in Edinburgh. She says:
As I sat on the sofa, tension filled the air.
Rebecca Green was a nurse for 20 years before becoming a death doula
‘What if the ambulance doesn’t get here in time?’ a man in his 70s asked me anxiously.
He was suffering from a chronic lung illness, which meant that if his condition took a turn for the worse, he’d need immediate resuscitation or he would die.
He had always been told by family and medics to keep fighting death, but I asked if he’d ever considered letting go instead.
Rebecca decided to train as a nurse when she was 20 years old and started working in intensive care
Instantly, all traces of his fear disappeared.
He admitted he didn’t want to die, but had never thought of simply giving in when the time came.
As an end of life doula – or death doula – my job is to support people in facing their fears and coming to terms with their own passing.
As odd as it sounds, people tend to want ‘permission’ to die without upsetting their family, and as I’m a stranger, they feel more able to tell me when they’re ready.
Often chatting to them over a cup of tea at home, I encourage my clients to express how they feel, share memories and see the beauty of their lives.
If they want to die at home, I help organise it with family support and act as a link between their loved ones and the NHS.
I’ve never been afraid of death, despite losing both parents as a child.
Despite losing both of her parents when she was young, Rebecca has never been afraid of death and enjoys helping others come to terms with letting go
Mum died of cancer when I was 11 and my dad died of a heart attack four years later. After that, I went to live with my aunt.
I remember being very angry – how could people carry on when my world had ended?
I wasn’t offered counselling, and while my school was sympathetic, no one wanted to talk about it.
At 20, I realised I loved being around people and didn’t want a typical nine-to-five job, so I trained as a nurse and started working in intensive care, A&E and later hospices, becoming familiar with the fragility of life.
But it wasn’t until 2010 that I became a death doula.
I mentioned to a friend that I’d love to take care of people through the dying process, and she told me she’d heard that people did that as a job.
While there are training courses, I decided to draw from 20 years’ nursing experience and my understanding of what to expect from patients living with a terminal illness.
Rebecca with her pet dog Baloo: She isn’t paid for supporting people through the dying process and still works full-time as a nurse
I first started doing it through word of mouth, helping a friend of a friend, but soon began working with a local charity Pilmeny Development Project, which put people in touch with me. I’ve even had people contact me on Twitter.
Although it can be a paid job, I do it voluntarily, and it ranges from once a week to once a month.
Mostly it involves simply talking to someone, but I might run the odd errand, such as popping out for a packet of biscuits.
I try not to get emotionally attached – if my feelings are involved, I’d be doing clients a disservice. But of course, I’ve been incredibly saddened by their stories.
One man in his 50s was devastated he wouldn’t live to see his sons grow up.
As he spoke, I burst into tears and we were both crying together.
Through her work, Rebecca has an appreciation for life and urges everyone not to waste it
I’ve helped 12 clients in total, but I’ve never been with one when they died – usually I don’t find out until the family informs me.
It can be hard to balance the job with a social life, as whenever a client needs me, I’m happy to help – unless I’m nursing, which I still do full-time – so I’ve cancelled many nights out.
Sometimes it’s hard to switch off, so I make sure I unwind by going to the gym, painting or walking my dog Baloo.
Some partners have found it scary, but most were supportive.
Being a death doula has made me realise we take the time that we have for granted.
It’s about making the most of the simple things and doing what we love.
With ever more baby boomers entering their golden years, third party end-of-life planners may be in great demand over the next two decades, as people try to take more control over their care as they die.
The Baby Boomers have redefined every stage of life they passed through, changing the definition of what it meant to be young, middle aged and now, old. (Fifty is the new 30, and gray is the new black.) Finally, we’re working on the last frontier — death.
An enormous amount of health care spending is invested in the postponement of dying. Courtney Martin wrote in the New York Times last year: “According to the National Institute of Health, 5 percent of the most seriously ill Americans account for more than 50 percent of health care spending, with most costs incurred in the last year of life in hospital settings.”
The Baby Boom generation is becoming the largest group of elderly people the country has seen, and when we go, we want to go well.
End-of-life planning became a controversial part of the Affordable Care Act when vice presidential candidate Sarah Palin labeled the idea “death panels” in 2009. In 2015, the ACA once again proposed reimbursing doctors for having the discussion with patients. Some futurists predict that third party end-of-life planners may be in great demand over the next 20 years as people try to take more control over their care as they die.
Studies have shown that two-thirds of us would prefer to die at home, but most of us generally die in Intensive Care Units at hospitals, receiving care and medication that extends the quantity of time we live, but greatly reduces the quality of it. End-of-life planners can help individuals and their families create a plan that accounts for how and where someone will face the last few months of life: at home, in a hospital or in hospice.
End-of-life counseling can be delivered by a variety of professionals, including clergy and chaplains, financial planners, medical staff or attorneys. Some colleges now offer certifications for professionals who want to specialize in end-of-life care. The certifications are often part of a gerontology program, preparing students to offer advice on social, psychological, medical, financial, legal and spiritual issues related to care.
Florida-based Mediation Training Group offers training on how to mediate between elders and their adult children about issues such as driving, remaining at home or medical care. The continuing education credit program is aimed at psychologists and social workers who deal with these issues in their family practice; similar training is offered for family law attorneys.
Doulas are women who have traditionally been trained to provide information and physical and emotional support to women before and during childbirth. The International End of Life Doula Association (www.inelda.org) offers the INELDA certification, which requires 22 hours of training. Doulas must meet certain requirements, including character references, and must complete several vigils that are evaluated by staff.
End-of-life doulas focus on planning, conducting vigil during death, and reprocessing a death with loved ones afterwards to provide insight and comfort. They may work in hospice or other institutional settings or work independently. Both the University of Central Florida and University of South Florida offer graduate certificates in end-of-life care.
End-of-life counseling is a relatively new profession, so data on salaries is not broken out from a professional’s primary practice. Attorneys and social workers will offer end-of-life services, so their earnings will supplement their fees. According to prodoula.com, certified doulas charge up to $1,500 for their services and earn an average of $45,000 per year. If compassion is your strength, you may be able to turn dying into a living.
In large part due to the enormity of suffering and loss of life during the height of the AIDS epidemic here, San Francisco has emerged two decades later with new models for providing palliative and humanistic care at the end of life, one of the best of which is represented by the tiny San Francisco Zen Hospice Project in Hayes Valley. The hospice facility, in a Victorian on Page Street, grew out of the 54-year-old San Francisco Zen Center just up the street, and began in 1987 as a way for Zen Center members to care for young AIDS sufferers and provide them with a peaceful and comfortable death. (A similar organization, Maitri, sprung up around the same time near the Castro, and continues to this day.) As a new piece in the New York Times Magazine puts it, the Zen Hospice Project “originated as a kind of compassionate improvisation,” and it has served as inspiration and proving ground for Dr. B.J. Miller, a 45-year-old clinician at UCSF who has emerged as a passionate and charismatic advocate for a new kind of end-of-life care. As he tells the Times Mag, his goal, and that of the Zen Hospice Project, is to “de-pathologize death.”
Miller is unique as a spokesperson for this new type of palliative care in that he had his own brush with death early in life, and wears the scars from it very prominently. At the age of 19, while a sophomore at Princeton, he and a couple of friends went climbing on a New Jersey Transit commuter train after a night of drinking. When he reached the top of the train, an electrical current arced out of a charged wire into Miller’s metal wristwatch, sending 11,000 volts through his body and severely burning his arm and two legs. He would soon become a triple amputee, but the experience of being in the burn unit for months and talking himself back from near death profoundly changed how he saw life, especially when he went to medical school. It’s something he describes in a TED Talk from 2015 that’s garnered nearly five million views. In it he says “we are all patients,” using the definition of the word as “one who suffers,” and says he hopes to bring a design sensibility, “that is intention, and creativity, to the experience of dying.”
A year after the Brittany Maynard case gained national attention, around the time that California’s death-with-dignity law was passing through the state legislature in mid-2015, the Times first discovered Miller and the Zen Hospice Project, describing it as “a fascinating, small-scale experiment” in an age when end-of-life care typically falls to hospitals. Hospitals, however, are not programmatically designed to comfort and care for the needs of dying people — they’re designed to make people well and send them home — and families often panic in the face of death causing disruptions in the final months of a person’s life. While, as of 2015, 44.6 percent of all deaths took place in hospice settings, 40 percent of those patients only spent a few days there following stays in intensive care — meaning, as the Times put it, there’s “not enough time to take full advantage of the technique’s soothing possibilities.” Add to that figure the fact a 2013 study that found that more people are choosing to die at home, however they still are transported back and forth to hospitals three or more times in the final 90 days of their lives — time that would be better spent quietly with loved ones, or doing something pleasurable. Also, a hospice experience should free friends and family from the burden (and occasional trauma) of being caregivers, so that they can simply be there with the person who is dying.
That is the focus of the SF Zen Hospice Project’s Guest House: sensory pleasure. Patients are allowed to smoke, outdoors, if they wish. The smell of freshly baked cookies wafting through the house is a frequent one. People play musical instruments. And in a case described in detail in the new Times Mag piece, a 27-year-old man dying of mesothelioma, that care involved welcoming in the man’s throngs of friends, their Bud Light and their video games, decorating his room like a “late-20’s-dude’s room,” letting him go on one last Sunday sailing trip with his friends despite being in significant pain, and helping him plan a wedding for his best friends to be performed in the small garden next door to the Guest House. This all happened in the course of nine days, after which he would be dead. And the wedding went on anyway, and what followed, in the hospice Guest House, was a combination wedding reception-funeral, a celebration that was “mixed up, upside-down and unexpectedly joyful.” “It makes you happy for a place like the Guest House where such things can happen,” Miller tells the Times Mag, via a meeting with colleagues, “a roof where these things can coexist.”
Shortly thereafter Miller stepped down as executive director of the Zen Hospice Project in order to pursue related goals. He’s raising seed money for what he’s calling the Center for Dying and Living, a kind of design lab focused on new models for palliative care, and he’s co-writing a field guide to end-of-life care.
These days the Zen Hospice Project’s Guest House is still only six beds, two of which are reserved for UCSF patients, and the others funded through donations and sliding-scale fees from patients. In contrast to hospitals, which may charge thousands of dollars per day to house and care for a dying patient for an indeterminate period, stays at the Guest House cost the organization about $750 a day, proving that their model is not just better from a human standpoint, but also an economic one, even if traditional insurance does not tend to cover the cost of residential hospice.
It’s something the rest of the country, and the insurance industry, needs to consider, and maybe Dr. Miller will be the one to build it on a larger scale here in the Bay Area, before long.
[O]ur household had a late and unwelcome entry in the death toll of 2016. It came with Rocko, who scraped in with a departure on Friday. Granted, the death of a cat is of less moment to most than that of George Michael, and he was a celebrity only to those who knew him, but our wee furry guy managed to give us life lessons without the irritation of a life coach, and company without human complications.
His first life lesson to me was early rising. His day, and therefore mine, began with regularity at 5.30am with a gentle whisker brushed across my face, then the nudge of a cold nose if that didn’t work, then a bite to the nose if all else but mild violence failed to rouse the deliverer of his morning meal.
Once the irritation has passed that the cat alarm once again chose my side of the bed, and never the other, I was up, fed, and at work before most others, getting my stuff done, and setting up an early exit at the other end of the day. Rocko was a productivity booster devoid of mumbo-jumbo: get up early, do your work, go home.
His second lesson was to demonstrate the benefits of adequate insurance, by having no insurance. Pet insurance might sound faintly ridiculous, but having spent thousands on vet bills in the last two years, and unless you’re able to save for unknown future medical catastrophes, it’s a no-brainer. We’re now breaking even on the insured dog, but were too slow for the cat. It’s compulsory for any future pet.
Rocko the cat
His third lesson was the decision in which he took no part, but which was the right thing to do, and which is the law makes impossible for people: euthanasia.
Nearing Christmas, he became bloated, carrying lymphoma in his gut, heart disease, and a tumour on his liver. We decided to put him down, but delayed it a week or so. He didn’t make it that far, forcing the decision to euthanase after he’d collapsed at home.
I knew something bad was up when, for the first time, he didn’t shred my arms while being shoved in the cat carrier.
As he lay dying on the vet table, our sadness came tinged with relief that the law is gentle enough to allow vets to put down pets when their time has come. His suffering was exceptionally short, his end far more peaceful than we force some people to endure.
After the narrowest of defeats for a euthanasia bill in South Australia in November, the next test of whether politicians will allow people the same mercy as we afford our pets comes in Victoria later this year. The Andrews government said in December it would bring legislation to allow some dying adults to die sooner than they otherwise would.
The right will be restricted to those who have the capacity to make decisions, who are at the end of their lives because of a terminal illness. Two doctors will likely have to approve the prescription of a euthanasia drug, and patients unable to take the tablet themselves could be helped by a doctor.
It strikes the right balance between the right of the dying to avoid unnecessary pain, and protecting others from an unnecessarily hasty death. It merely adds another option for those at the end of their lives, rather than being pumped with morphine to dull the pain of a disease taking its course.
It would end that fake distinction between the legal form of hastening death known as passive euthanasia (like doctors turning off a life-support machine), and the form of hastening death known as active euthanasia (a doctor-provided pill or injection that causes death) which remains illegal across Australia even with the ardent wishes of the patient.
It’s now two days after we put Rocko down, and I am using the home computer without feline keyboard interference for the first time in years. On the screen, which I can see without having to peer around a cat head, is an e-book called Damage Done, a collection of personal essays compiled by Andrew Denton’s advocacy group, Go Gently Australia.
A short way in is an extraordinary death notice, published in The Age last year, which captures the need and urgency for voluntary euthanasia far better than I can. It speaks for itself: “Andrew Ross Carswell, a skilled musician, at times tedious intellectual, much loved friend of many, valued family member, and adored husband to Carolyne, died an unnecessarily protracted, distressing death on Sunday 13 March as a result of the continuing absence of legislation that could have otherwise allowed a man of his integrity experiencing the final stages of liver cancer peaceful, timely access to euthanasia. May he finally be able to enjoy the long sleep he had been anticipating and may the anti-euthanasia lobby collectively experience the tediously prolonged, objectionable demise they are so determined to impose on everyone else.”
[R]amses II, also known as Ramses the Great, was born about 3,000 years ago and is widely regarded as the most powerful pharaoh of the Egyptian Empire. The Greeks called him Ozymandias. When he died in 1213 B.C.E., he left a series of temples and palaces that stretched from Syria to Lybia, and countless statues and monuments commemorating his impressive reign. By the 19th century, when European colonization reached Egypt, most of these statues were gone, and the ones that remained were in ruin. In 1816, the Italian archaeologist Giovanni Belzoni discovered a bust of Ramses and acquired it for the British Museum. This is when Ozymandias’s life, in one respect, truly began.
“Ozymandias,” perhaps the most famous sonnet Percy Byshe Shelley ever penned, was written in 1817, as the remains of the famous statue were slowly transported from the Middle East to England. Shelley imagines a traveler recounting a journey in a distant desert. Like Belzoni, Shelley’s character discovers a great bust, half-buried in the windswept sands. Next to the wreckage is a pedestal where the monument once stood. Inscribed in shallow letters on the slab of rock: “My name is Ozymandias, king of kings: Look on my works, ye Mighty, and despair!” Of course, as Shelley’s poem tells us, nothing remained of these works or the king of kings. Just sand.
The poem’s message is perennial: All of this will be over soon, faster than you think. Fame has a shadow — inevitable decline. The year 2016 has delivered a string of deaths that serve as bracing reminders of this inevitability: Prince, Nancy Reagan, David Bowie, Elie Wiesel, Bill Cunningham, Muhammad Ali, Gordie Howe, Merle Haggard, Patty Duke, John Glenn. Of course, it has also been a year that has ushered in a new empire and, simultaneously, the specter of apocalypse. The year’s end is a time to take account of kingdoms built, but also the sheer rapidity of their destruction. It is a chance to come to terms with the existential fragility that is overlooked in most of our waking hours and that must be faced even by the greatest among us.
We tend to defer the question of living or dying well until it’s too late to answer. This might be the scariest thing about death: coming to die only to discover, in Thoreau’s words, that we haven’t lived.
Facing death, though, is rarely simple. We avoid it because we can. It’s easier to think of “dying” as an adjective than a verb, as in a dying patient or one’s dying words. This allows us to pretend that dying is something that is going to happen in some distant future, at some other point in time, to some other person. But not to us. At least not right now. Not today, not tomorrow, not next week, not even next decade. A lifetime from now.
Dying, of course, corresponds exactly with what we prefer to call living. This is what Samuel Beckett meant when he observed that we “give birth astride the grave.” It is an existential realization that may seem to be the province of the very sick or very old. The elderly get to watch the young and oblivious squander their days, time that they now recognize as incredibly precious.
When dying finally delivers us to our unexpected, inevitable end, we would like to think that we’ve endured this arduous trial for a reason. Dying for something has a heroic ring to it. But really it’s the easiest thing in the world and has little to do with fame and fortune. When you wake up and eat your toast, you are dying for something. When you drive to work, you’re dying for something. When you exchange meaningless pleasantries with your colleagues, you’re dying for something. As surely as time passes, we human beings are dying for something. The trick to dying for something is picking the right something, day after week after precious year. And this is incredibly hard and decidedly not inevitable.
If we understand it correctly, the difficulty is this — that from the time we’re conscious adults, maybe even before that, we get to choose how we’re going to die. It is not that we get to choose whether we contract cancer or get hit by a bus (although certain choices make these eventualities more or less likely) but that, if we are relatively fortunate (meaning, if we do not have our freedom revoked by circumstance or a malevolent force we can’t control), we have a remarkable degree of choice about what to do, think and become in the meantime, about how we go about living, which means we have a remarkable degree of choice over how we go about our dying. The choice, like the end itself, is ultimately ours and ours alone. This is what Heidegger meant when he wrote that death is our “own-most possibility”: Like our freedom, death is ours and ours alone.
Thinking about all of our heroes and friends and loved ones who have died, we may try to genuinely understand that death is coming, and to be afraid. “A free man thinks of death least of all things,” Spinoza famously wrote, “and his wisdom is a meditation not of death but of life.” But we don’t even begin to think about life, not really, until we confront the fact that we are doing everything we can not to think about death. And perhaps we’re not so much afraid of dying, in the end, as of not living and dying well.
Everyday life has no shortage of things with which to waste our time: the pursuit of money, intelligence, beauty, power, fame. We all feel their draw. But the uncomfortable, claustrophobic truth is that dying for something like money or power tends not to be a choice at all. David Foster Wallace argued that for most of us dying in the pursuit of wealth or prestige is simply our “default setting.” The problem isn’t that we’re picking the wrong things to die for, but that we aren’t actually picking. We chose to live by proxy. We allow ourselves to remain in a psychological trap that prevents us from seeing what might be genuinely meaningful in our own lives. In doing so, we risk, according to Wallace, “going through (our) comfortable, prosperous, respectable adult life dead, unconscious, a slave to our heads and to (our) natural default setting of being uniquely, completely, imperially alone day in and day out.” We might call this the Ozymandias Trap — Look on my works, ye Mighty, and despair! — and be on guard against falling into it ourselves.
Most days we discover that we’re not quite up to the heroic task of extricating ourselves from the Ozymandias Trap. Others, we fear we’ve failed miserably. It is not realistic to love in the awareness that each day might be your last. But at least we can stop pretending that we will endure forever.
In Tolstoy’s famous story “The Death of Ivan Ilyich”, the dying hero reluctantly accepts his own mortality, albeit only once he can no longer avoid the truth:
It’s not a question of appendix or kidney, but of life and … death. Yes, life was there and now it is going, going and I cannot stop it. Yes. Why deceive myself? Isn’t it obvious to everyone but me that I’m dying … it may happen this moment. There was light and now there is darkness … When I am not, what will there be? There will be nothing …
Ivan Ilyich can’t pretend that he’s not dying. He recognizes what Ramses II apparently did not: With his death, there is no justification of his life, there is no proof of himself to leave behind, there are no monuments where he is going. He has lied to himself all of his life about the fact that he’s going to die.
In the end, Ivan is liberated from his self-deception. And we, too, can free ourselves from this delusion. As soon as today. Right now.
If we succeed, we may find that confronting the fact of our own impermanence can do something unexpected and remarkable — transform the very nature of how we live.
Dave Adox, right, and his husband Danni Michaeli at their home in South Orange, N.J., in the fall of 2014. Adox was diagnosed with ALS at age 42 and became almost totally paralyzed within six months. He died last May.
[A]t 44 years old, Dave Adox was facing the end of his two-year battle with ALS, also known as Lou Gehrig’s disease. He needed a ventilator to breathe and couldn’t move any part of his body, except his eyes. Once he started to struggle with his eyes — his only way to communicate — Adox decided it was time to die.
He wanted to donate his organs, to give other people a chance for a longer life. To do this, he’d need to be in a hospital when he went off the ventilator.
“I was always interested in organ donation and had checked the box on my license,” Adox said last spring at his home in South Orange, N.J., through a machine that spoke for him. He laboriously spelled out these words, letter by letter, by focusing his eyes on a tablet. Adox had spent a career with words that now came slowly — he was a freelance reporter, including for public radio, then went on to work in advertising.
“When I got diagnosed with ALS at 42, and the disease paralyzed my entire body in six months, I definitely developed a greater appreciation of the value of the working human body,” he said.
Adox and his husband, Danni Michaeli, made a plan. They would go to University Hospital in Newark, where Adox often had been treated, and have
Family members surround Adox on the day that he died last May. His wish to die in a hospital so that he could donate his organs turned out to be difficult to fulfill.
his ventilator disconnected. The doctors there had reassured Adox he could ask to come off the ventilator anytime.
In May his family and friends flew in from around the country, and joined neighbors for a big celebration of Adox’s life. They spent one last weekend with him, planting a tree and painting a big, colorful mural in his honor. Some wore T-shirts printed with Adox’s motto, “Celebrate everything until further notice.”
But their plan suddenly changed when University Hospital’s attorneys intervened.
“At the 11th hour, they emailed us and said their lawyers had stopped the process because they were afraid it looked too much like assisted suicide,” Adox explained. “I was crushed.”
Every day, physicians withdraw life support on behalf of patients in hospitals who choose to refuse care. That’s generally not considered physician-assisted suicide or euthanasia — the key being that the patient is already in the hospital.
But Adox was asking to be admitted to the hospital specifically to end his life. And despite the planning, his request made some people uncomfortable.
Dr. John Bach, a professor of physical medicine rehabilitation and neurology at Rutgers New Jersey Medical School, which is affiliated with University Hospital, was Adox’s primary physician, and understood and approved of his patient’s plan to end his life and share his organs.
“I could have given [him] a prescription for morphine and he could have been taken off the ventilator at home,” Bach says. “But he wanted his organs to be used to save other people’s lives!”
Other physicians at the hospital supported Adox’s plan, too.
“We have an ethics committee that approved it 100 percent,” Bach says. “We have a palliative care committee — they all agreed, 100 percent. But it didn’t make any difference to the lawyers of our hospital.”
Adox before he was diagnosed with ALS. He decided to become an organ donor so that other people could enjoy a longer life.
University Hospital has declined several requests for comment, but Bach says the hospital’s attorneys were concerned about liability.
“The legal issue is: What is euthanasia?” Bach explains. “Are you killing a patient by taking him off a respirator that’s keeping him alive?”
Adox had an advance directive that stated, “I do not want medical treatment that will keep me alive if I have an incurable and irreversible illness and the burdens of continued life with life-sustaining treatment become greater than the benefits I experience.”
Having an advance directive on file is especially important for ALS patients, Bach says, because they can eventually become “locked in,” unable to express their wishes.
“To be locked in means you cannot move anything at all — not a finger, not a millimeter,” Bach says. “You cannot move your eyes; you cannot move your tongue; you cannot move your facial muscles at all. You cannot even wink to say yes or no.”
In this particular case, the hospital wouldn’t have had to rely on the directive, Bach noted: Adox was still fully capable of expressing his wishes clearly. It deeply troubled the physician that his patient’s wishes could not be met.
“Myself and all the other doctors who took care of him in the hospital were almost as upset about it as he and his husband were,” Bach says.
Dr. Joshua Mezrich, a transplant surgeon at the University of Wisconsin Hospital, has had patients with ALS who, like Adox, wanted to donate organs. He believes hospitals need to create protocols for these situations — even though such cases are rare.
Mezrich acknowledges this could challenge a key principle for physicians: First, do no harm. But that mandate can and should be interpreted broadly, he believes.
“I think it’s fair to say that doing no harm doesn’t always mean making people live as long as possible — keeping them alive no matter what,” Mezrich says. “Sometimes, it means letting them have the death that they want, and it means letting them give this gift, if that’s what they want.”
Adox and Michaeli with their son, Orion, in the winter of 2015.
Typically a separate team of physicians or an organ procurement team discusses donation with family members after a patient dies, to avoid any tones — whether real or perceived — of coercion or conflict of interest, Caplan points out.
“You’d have to change the culture of critical care and say it’s OK to talk with the person about organ donation as part of their dying,” he explains.
This issue may get bigger, Caplan believes, as states move to legalize physician-assisted death. Although, so far, there has been little public discussion because “it’s too controversial.”
“If we went in the direction of bringing more people who are dying — whether it’s ALS or whatever it is — into settings where we could have them consider organ donation because they’re on the machines, we’d probably have a bigger pool of organ donors,” Caplan says.
But that approach would have a downside, too, he continues. People might perceive doctors as more focused on “getting organs” than caring for dying patients.
Adox takes one last walk with family and friends in New York’s Central Park before going to a hospital to be disconnected from the ventilator that kept him alive.
There is at least one hospital that has established a policy for patients with ALS who want to be organ donors. Froedtert Hospital and its partner Medical College of Wisconsin, in Milwaukee, approved such a policy in May.
About a year ago there, a patient with ALS wanted to donate her organs, but the hospital wasn’t able to honor her wish. The experience prompted physicians to develop a multistep system that includes evaluation from psychologists, an ethics review and considers technical matters such as transportation or insurance coverage.
“Obviously we’re all sensitive to any perception of assisted expedition of death,” says Dr. William Rilling, vice chair of clinical operations of radiology at Froedtert Hospital. “But, at the end of the day, the patient’s wishes count for a lot.”
After University Hospital declined to admit Adox, he and his husband reached out to six other hospitals through various intermediaries. They waited for days to hear back.
In the end, LiveOnNY, the organ procurement organization based in New York City, stepped in to help. The organization’s medical director, Dr. Amy Friedman, went to visit Adox at his home to vet his suitability as a donor.
“There was a hospital partner,” Friedman says, “that felt very supportive of this circumstance, understood the challenges that they would be faced with, [and was] prepared to be supportive of what Dave wanted and would be able to provide a bed.”
Finally, on the palliative care floor at Mt. Sinai Hospital on May 18, Adox and Michaeli prepared to say their goodbyes.
“We sat; we listened to ’80s music. I read Dave a poem,” Michaeli recounts, close to tears. “And when they were really sure — and we were all really sure — that he was in a deep state of sedation they disconnected his breathing machine.”
And in the end, Adox’s wishes were met — he was able to donate his liver and kidneys. Michaeli says he felt “an incredible swelling of gratitude” to the hospital team who helped make that happen.
“The person we were trying to do a direct donation for was a match,” Michaeli says. “And he has Dave’s kidney right now.”
