I could soon be the physician following a policy that determines who would be denied medical care. At the same time, I could be one of those forbidden care if I needed it.
Medical leaders in Washington state quietly debated a plan to decide who gets care when hospitals fill up. Not many details are out, but the arguments echo a similar discussion in Italy, where an intensive-care unit protocol withheld life-saving care from certain people. The rejected were those older than 80 or who had a Charlson comorbidity index of 5 or more. With my diagnosis of stage IV lung cancer, I score a 6!
When I read the news, I was morally troubled, enraged and mortified.
I am in the same boat as many colleagues who have health issues or are older and could be asked to return from retirement or work accommodation to help out. Are we asking individuals to risk their lives, but will refuse them treatment if they get sick?
I am not familiar with empirical, objective evidence to support setting a threshold for who should or should not receive care as a way to improve outcomes for a community. Research to answer such an empirical question would have been unethical to start with. Using such a strategy also misuses predictive tools.
Age or the Charlson comorbidity index can help give an estimate of prognosis. But they cannot tell us how an individual person would fare in response to treatment for COVID-19. And if we want to decide who receives care, how can we forget about functional status, quality of life, and the person’s values and preferences?
Besides, the risk of eroding people’s trust is intolerable. The last thing we want is for people to lose confidence that they will be treated fairly just because of their health conditions or age. Do we intend to make such policies available to the public, or do we keep them secret so only people with privilege will know about them?
This is not the story we want to leave for history. And who said that an order from a health authority takes the moral burden off your shoulders? Have we forgiven the doctors in Nazi Germany who experimented with vulnerable patients? We humans carry moral responsibility for our actions. If anything, blindly following an unjust order doubles the burden. Worse than doing what is unjust is not standing up to advocate for the vulnerable. What will be remembered is that we pacified our consciences with a piece of paper we called a “policy.”
We can do better.
Restricting people from accessing care is not the only strategy. We can continue to shift resources to optimize the work. For example, a generalist can lighten the load for the specialist. A well-trained practitioner can supervise a less-trained one. Since the epidemic is not hitting every U.S. city with the same intensity, sick people can be moved around.
If we think we cannot save everyone, let’s invite people to have conversations about death and dying. Patients and their primary-care doctors should discuss advanced directives. The patient can sign a do not resuscitate order. People could even embrace death with dignity if they live in a state that allows it.
I can make the choice to not live and forfeit my right to care. But that right cannot be taken from me. Age or health conditions cannot alter a person’s entitlement.
We can trust doctors’ abilities to make the right moral decision, and we can give them the authority and support in so doing. In today’s hyper-complex context, medical doctors should be competent to manage, case-by-case and situation-by-situation.
Yes, it will be a difficult time. When a decision has to be made between two lives, we regret having to make the decision, and we express our deep sadness. We should not make such unfortunate decisions a norm, and we should not write a policy to make it OK. It is not OK, and it will never be.
The healthcare system has a terrible track record of failing various marginalized groups. But we do have a good track record of providing exceptional care to people. Let’s take the opportunity to do it right this time and not miss our chance, because if the public perceives a failure on our part, their trust will take decades to regain.
Maybe, just maybe, America’s greatest taboo — talking openly about death — is itself dying a slow death. Too slow, if you ask Diane Rehm, author of the new nonfiction book, When My Time Comes.
“Until we overcome our fear about talking about death,” the longtime NPR host says, “few of us can have the end of life we envision. We’ve been so focused on living and accomplishing and moving forward that we don’t think about death as part of life.”
For 37 years, Rehm’s morning talk show — first on Washington, D.C.’s public radio station WAMU, then on NPR — allowed her to focus on living, accomplishing and moving forward. But that changed as she witnessed her husband of 54 years, John, decline to the point where he pleaded with his doctor to prescribe him a medication to end his life. And without a medical aid-in-dying law in Maryland, his doctor refused.
So, John Rehm, wracked by Parkinson’s disease, with a severely diminished quality of life, decided to starve himself to death. No water. No food. No medication. It would take him 10 days to die.
And that began Diane Rehm’s journey into advocacy. After signing off her talk show in 2016, she has immersed herself in the world of the terminally ill and studying the limited options available to those for whom palliative care (focused on relieving pain and symptoms) is not the solution to their end-of-life misery.
“We focus so much on happiness and joy surrounding birth, but we think about death as this place no one wants to go — but we’re all going there. Everybody is,” says Rehm in her office at WAMU, where she hosts the podcast “On My Mind.” A February 2019 episode discussed end-of-life issues and why so many people’s end-of-life wishes are not realized.
Discussing Aid in Dying
For several years, Rehm, 83, has crisscrossed the country, speaking to the terminally ill and their families, as well as advocates and opponents of medical aid in dying. She also talked to ethicists and physicians on both sides of the issue. It’s all part of an emerging national conversation about the right to die that Rehm has captured in her new book.
During a speaking engagement in a church in Falmouth, Mass., Rehm asked audience members to raise their hands if, “you are one of those people who is not going to die.” Not a hand went up, of course, and it provoked a lot of nervous laughter.
Some of the crowd had gathered at that church for a “death café,” part of a movement that began in Europe in 2004 in which people of all ages talk candidly about dying, their fears and hopes for the end of life. It’s a sign that America’s reluctance to bring death out of the shadows may be fading.
The medical aid-in-dying movement for the terminally ill — some call it death with dignity —began in Oregon in 1994. It took another 14 years for Washington state to pass its law. “But since then, Montana (2009 State Supreme Court ruling), Vermont, California, Colorado, Washington, D.C., Hawaii, New Jersey and Maine have followed suit.
Each jurisdiction allows a patient who has no more than six months to live (certified by two physicians) to request a lethal dose of medication as long as that person has the capacity to decide and can self-administer.
Changing Minds on Medical Aid in Dying
More than a dozen other states are considering such a law, including Maryland, where Rehm testified last year in support of medical aid in dying. The bill lost by a single vote in the state Senate. But supporters, including the bill’s sponsor, the Maryland House of Delegates’ Shane Pendergrass, are optimistic that the End of Life Option Act will pass this year.
“Everyone is one bad death away from supporting the bill,” Pendergrass, a Democrat from Howard County, said during a news conference in January 2019.
Case in point: Maryland Del. Eric Luedtke, a Democrat from Maryland’s Montgomery County, who originally opposed the legislation. “The two biggest things that gave me pause were the concern about normalizing suicide (three of his family members had attempted suicide) and that some folks in the disabilities community believed aid in dying could be abused,” he told Rehm, who included his comments in her book.
Then, Luedtke’s mother, stricken with esophageal cancer, was in extreme pain — even with palliative care. A few days before she died, “she got the bottle of liquid morphine she had been prescribed, tried to drink it, tried to commit suicide,” he said.
A few months after his mother died, Luedtke signed on to the bill. “I began to question whether I had the right as an elected official, or even as her next of kin, to make that decision (of whether she could use a lethal prescription),” he said. “I think her death would have been less painful and there would have been more closure, had that option been available to her.”
Joe Fab, producer and director of Rehm’s documentary, became interested in end-of-life issues after his sister and both his parents died within four years. “We are just too frozen up in this country, talking about death,” he says.
The Core Conflict
Dr. Lonnie Shavelson, a former emergency room doctor who founded Bay Area End of Life Options in Calfornia, distilled the complex debate surrounding medical aid in dying, to a phrase, included in Rehm’s book: “You’ve got the ethic of autonomy against the ethic of maintaining life.”
The American Medical Association sides with maintaining life, opposing what it still calls “physician-assisted suicide” because the group says it’s “incompatible with the physician’s role as a healer.”
The question that remains unsettled in the context of the physician’s Hippocratic Oath is whether a doctor does more harm than good in writing a lethal prescription for a suffering, terminally ill patient.
The Catholic Church and other religious groups have not given their blessing to medical aid in dying. Diane Rehm is quick to say she respects all opposing views, but remains steadfast in her support for the terminally ill individual choosing when his or her life should end.
The public likely associates two people — Jack Kevorkian and Brittany Maynard — with medical aid in dying more than anyone else. Kevorkian, the controversial pathologist who assisted in the deaths of 130 terminally ill patients in the 1990s and was sent to prison, kicked off the national debate over the right to die.
But it was Maynard who put a new, young face on the right-to-die movement and perhaps did more than anyone in accelerating the growth of laws. Given six months to live with a brain tumor, Maynard moved to Oregon to take advantage of that state’s death-with-dignity law. Before she died on Nov. 1, 2014 at 29, her videos promoting medical aid in dying went viral.
Rehm’s Take on the Subject
At the conclusion of Rehm’s book and documentary, she asks her grandson, Benjamin Zide, a Dartmouth sophomore studying medical ethics, to pick up his phone and take a video of her as she described what would be for her a “good death.” Here’s what she says:
“I came across a perfect paragraph that Anne Morrow Lindbergh left behind. She wrote, ‘To my family, my physician and my hospital: If there is no reasonable expectation of my recovery from mental or physical disability, I request I be allowed to die and not be kept alive by artificial means and heroic measures. I ask that medication be mercifully administered to me for terminal suffering, even if it hastens the moment of my death. I hope that you who care for me will feel morally bound to act in accordance with this urgent request.’”
Last night, as Rehm kicked off her book tour at Washington, D.C.’s Sixth & I synagogue, she recounted her mother’s suffering before dying at age 49 and how John Rehm’s father and mother committed suicide. So, the subject of death was part of the conversation at their dinner table, even before John was diagnosed with Parkinson’s.
Diane Rehm says she told her husband, “When my time comes, I need some help from you. I don’t want to live to the point where I’m sick and infirm and cannot take care of myself.” And, she says, “John looked at me and said, ‘I feel the same way.’”
As the coronavirus spreads through the population, there is one fact we can all agree on. Whether we like it or not, society’s greatest taboo – death and dying – has been thrust unequivocally centre stage.
How could it not, when government strategy is to allow the virus to infect huge swathes of the country in the hope of building sufficient “herd immunity” to protect from future harm? The virus has killed an estimated 3.4% of those it has infected, according to the World Health Organization, although this figure is expected to decline as the true number of people infected becomes apparent. Herd immunity, according to Downing Street’s chief scientific adviser, requires a minimum infection rate of 60% of the population. Thus we may face a potential early and unexpected death toll of hundreds of thousands of Britons.
There is, therefore, a glaring imperative to confront the topic so many of us long to squirm away from: the inescapable fact of mortality. As a palliative care doctor, I am intimately acquainted with our reluctance to square up to dying, and with the unintended harms of such squeamishness. Advance care planning – the phrase doctors use to describe proactively how much medical intervention you would wish for in extremis – is too frequently neglected, by patients and doctors alike.
Sometimes, for example, if an oncologist is less than candid about a patient’s frailty precluding any further rounds of chemotherapy, a family may be unaware that time is running out. Profound and vital conversations between family members never happen. Final messages hang in the air, forever unsaid.
Suddenly, the patient is comatose and fading. And no one has sought to find out if they would like heroic efforts at prolonging life – or if, perhaps, their final wish is to die at home, neither gowned nor tubed, with no machines and only loved ones at their side.
We are fast approaching a crunch time. NHS intensive care beds will be imminently overwhelmed with patients in dire need of mechanical ventilation. Italy’s experience has shown all too graphically that peak infection rates demand draconian rationing of health resources. In Lombardy, for example, some beleaguered hospitals have been forced to impose bans on ventilators for coronavirus sufferers aged over 60 – this despite knowing that it is predominantly the elderly who will die.
As Britain approaches peak infection, we therefore owe it to each other to start talking now. Would your mother, approaching 80, even wish for an intensive care bed? Do you, her anxious offspring, even feel able to find out? No one can pretend these discussions are easy. Our dearly beloved mums and dads are no less loved for their years; how on earth do we begin to broach the prospect of each other’s deaths?
If there is one thing I have learned from my time in a hospice, it is that these conversations rarely measure up to the degree with which we dread them. Indeed, for some elderly patients – conscious of their frailty – a little candour about the future can bring immense relief. It is fine to stumble, feel awkward, grope your way, get the words out wrong. In the end, all that matters is motive: the sincerity of your fumbled aim to tease out your loved one’s views.
Two medical truths may help you find the strength to talk and listen. First, every medical intervention has cons as well as pros. Even for young and healthy patients, intensive care is a gruelling experience that can leave serious, long-term medical problems. For the elderly, survival is more doubtful, let alone full restoration to good health.
Second, not every problem can be fixed. Sometimes, a disease is so aggressive that intensive care cannot cure, but only harm. When doctors conclude intensive care is not an option, it is not discrimination but a weighing-up of what might work, the sober balancing of benefits and risks.
In the end, an advance care plan need be nothing more technical than a chat over a cuppa. Steel yourself. Find out your loved ones’ wishes and tell them yours at the same time. There is kindness in being informed and prepared.
And – please – know that however besieged the health service becomes, we will never stop caring for every patient. You may be young, you may be old, but we will always do our best. How much you matter to us will never, ever run dry.
“I’m gonna die, you’re gonna die. So is everyone we’ve ever loved and hated. And that’s OK.”
By Molly Marco
When I thought about what to write for my End Well blog post, I struggled to think of something different than what I submitted last year. The story I share in last year’s piece is one I’ve now told a million times. I know it well — where to put the emphasis (“Ever onward!”) and what will get the audience’s applause. Conversely, I know what parts of my story people may want to deny or avoid: Death. Dying. Fears and deficits that come with a brain cancer diagnosis.
In July 2016, my brain tumor was discovered after I fainted off a bar stool at a downtown Detroit coffee shop. Turns out, it wasn’t just a simple faint: I had a grade 3 anaplastic astrocytoma. A grade 3 astrocytoma is a junior glioblastoma (or, more accurately, a glioblastoma is a grade 4 astrocytoma). It is incurable and considered a terminal diagnosis, though many patients prefer to call it a chronic illness. That doesn’t mean I’m dying tomorrow — unless, as my neuro-oncologist once told me, I get hit by a car or something like that — it just means we don’t have a fix.
We expect my tumor to, maybe, charge up and for those rogue astrocytes to return — either as anaplastic astrocytoma again, or GBM. One or the other, no lesser. I won’t get better, we just hope that we can hold it off as long as possible before its encore performance. Worse than reoccurrence or GBM? There’s not really anything worse. It’s a turd sandwich.
Though come to think of it, there is worse. Worse is denying that reoccurrence is possible. Worse is convincing myself that I am cured and “cancer-free” (no brain cancer patient should ever be told that falsity) only to crumble and fall to pieces when new growth appears on a future MRI.
After Molly finished her chemotherapy, she got this tattoo. | Memento Mori: Remember you must die. Amor Fati: Love your fate
Worse is not mentally planning for future treatment, including palliative and end-of-life care. When to demand my off-switch to be clicked, so my family isn’t left making the difficult choice for me.
There may come a time when I can’t write and I can’t speak, so I plan to make these decisions while I’m still in control of my think-box.
Losing my mom last year and my aunt recently brings certain things to the forefront of my now with urgency: Death is guaranteed. Death will happen. I want to be ready. Not because I’m morbid or depressed, but the opposite of that. The thought of leaving this world — everyone and everything I love — scares me. The thought of the act of dying scares me more than death itself, to be honest. I need to be on better terms with death and dying.
If death is anything like falling off a barstool and passing out, I can handle that. The thought of an eternal afterlife I can’t even comprehend, but that sounds cool, too. But dying in pain and afraid? That is what I fear. I don’t want that. However, I choose to talk about it so I am as familiar with death and dying as I am with my own name. It’s not because I crave death, it’s because I love being alive with every fiber of my being. I love life so much.
And if we’re honest with ourselves, we can admit that in loving life — truly loving life — we can accept death as a thing we all do. There should be no stigma attached to something absolutely guaranteed from the moment we come into existence: I’m gonna die, you’re gonna die. So is everyone we’ve ever loved and hated. WE ARE ALL GOING TO DIE. That’s that. And that’s OK.
Last year, I suggested we live our best lives and live them right now. This year? Live our best lives, live them right now, because one day — you are going to die. Learn to let it be OK. And be ready.
My parents lived good lives and thought they’d prepared for good deaths. They exercised daily, ate plenty of fruits and vegetables, and kept, in their well-organized files, boilerplate advance directives they’d signed at the urging of their elder lawyer. But after my father had a devastating stroke and descended into dementia, the documents offered my mother (his medical decision-maker) little guidance. Even though dementia is the nation’s most feared disease after cancer, the directive didn’t mention it. And even though millions of Americans have tiny internal life-sustaining devices like pacemakers, my mother was at sea when doctors asked her to authorize one for my father.
Our family had seen advance directives in black and white terms, as a means of avoiding a single bad decision that could lead to death in intensive care, “plugged into machines.” But given that most people nowadays decline slowly, a good end of life is rarely the result of one momentous choice. It’s more often the end point of a series of micro-decisions, navigated like the branching forks of a forest trail.
In our family, one of those micro-decisions was allowing the insertion of the pacemaker, which I believe unnecessarily extended the most tragic period of my father’s life, as he descended into dementia, near-blindness, and misery. In the process of researching my new book, The Art of Dying Well, I’ve met many other people who’ve agonized over similar micro-decisions, such as whether or not to allow treatment with antibiotics, or a feeding tube, or a trip to the emergency room, for a relative with dementia.
If there was one silver lining in my father’s difficult, medically-prolonged decline, it is this: It showed me the havoc dementia can wreak not only on the life of the afflicted person, but on family caregivers. And it encouraged me to think more explicitly about my values and the peculiar moral and medical challenges posed by dementia. At the moment, I’m a fully functioning moral human being, capable of empathy, eager to protect those I love from unnecessary burdens and misery. If I develop dementia —which is, after all, a terminal illness —I may lose that awareness and care only about myself.
With that in mind, I believe that “comfort care” is what I want if I develop dementia. I have written the following letter —couched in plain, common-sense language, rather than medicalese or legalese — as an amendment to my advance directive. I’ve sent it to everyone who may act as my guardian, caregiver or medical advocate when I can no longer make my own decisions. I want to free them from the burden of future guilt, and that is more important to me than whether or not my letter is legally binding on health care professionals. I looked at writing it as a sacred and moral act, not as a piece of medical or legal self-defense. I’ve included it in my new book, The Art of Dying Well: A Practical Guide to a Good End of Life. I invite you to adapt it to your wishes and hope it brings you the inspiration and peace it has brought to me.
Dear Medical Advocate;
If you’re reading this because I can’t make my own medical decisions due to dementia, please understand I don’t wish to prolong my living or dying, even if I seem relatively happy and content. As a human being who currently has the moral, legal, and intellectual capacity to make my own decisions, I want you to know that I care about the emotional, financial, and practical burdens that dementia and similar illnesses place on those who love me. Once I am demented, I may become oblivious to such concerns. So please let my wishes as stated below guide you. They are designed to give me “comfort care,” let nature take its course, and allow me a natural death.
I wish to remove all barriers to a peaceful and timely death.
Please ask my medical team to provide Comfort Care Only.
Try to qualify me for hospice.
I do not wish any attempt at resuscitation. Ask my doctor to sign a Do Not Resuscitate Order and order me a Do Not Resuscitate bracelet from Medic Alert Foundation.
Ask my medical team to allow natural death. Do not authorize any medical procedure that might prolong or delay my death.
Do not transport me to a hospital. I prefer to die in the place that has become my home.
Do not intubate me or give me intravenous fluids. I do not want treatments that may prolong or increase my suffering.
Do not treat my infections with antibiotics—give me painkillers instead.
Ask my doctor to deactivate all medical devices, such as defibrillators, that may delay death and cause pain.
Ask my doctor to deactivate any medical device that might delay death, even those, such as pacemakers, that may improve my comfort.
If I’m eating, let me eat what I want, and don’t put me on “thickened liquids,” even if this increases my risk of pneumonia.
Do not force or coax me to eat.
Do not authorize a feeding tube for me, even on a trial basis. If one is inserted, please ask for its immediate removal.
Ask to stop, and do not give permission to start, dialysis.
Do not agree to any tests whose results would be meaningless, given my desire to avoid treatments that might be burdensome, agitating, painful, or prolonging of my life or death.
Do not give me a flu or other vaccine that might delay my death, unless required to protect others.
Do keep me out of physical pain, with opioids if necessary.
Ask my doctor to fill out the medical orders known as POLST (Physician Orders for Life Sustaining Treatment) or MOLST (Medical Orders for Life Sustaining Treatment) to confirm the wishes I’ve expressed here.
If I must be institutionalized, please do your best to find a place with an art workshop and access to nature, if I can still enjoy them.
A kind reader has reminded me that in a recent column when I gave examples of sad losses, I did not mention the loss of a child. She was right. I didn’t, although I have written about the death of a child in the past. I suppose it was not on my mind because we aren’t supposed to lose our children, not before us. I’ve corrected this in recent columns.
But as I thought about it, I know it happens more often than we’d like to think about. In just the last few months, several readers have written to me about their grief over the premature death of grown children in their 30s or 40s — one from the flu, which was particularly bad this year. Another was from a car accident, but it could have been a motorcycle crash, opioids, a heart attack, cancer — or war, mass shootings, anything that causes young deaths.
It feels both tragic and all backward when someone loses a child, no matter what age, whether young or adult. With our heightened expectation that life expectancy here in the U.S. is quite long, most of think we will live to be real old, and that modern medicine can cure just about everything.
Many of us are baby boomers, where we feel we will live just about “forever,” even though we really know life is finite. So a young or middle age death just doesn’t fit. We are truly caught off guard. It just seems wrong.
Recently a friend mentioned she was still “trying to get her head around” the sudden death of a 30-year-old friend. One reader who lost a 45-year-old son explained that part of the grief is the loss of family legacy, and all the bright future and promise of their lost son. It’s heartbreaking.
It also happens that people sometimes lose their spouse in their 40s or 50s, left not only alone but often with young children to raise as a single parent. This means somewhere there are also parents grieving over that death; the spouse was their grown child. So any death at a young age very much compounds the intensity of grief.
Some people have lost another young adult they were close to — a friend, a neighbor, a niece or nephew. To the bereaved, these young people could be so close they seem a lot like their own children. And to complicate matters further, such grief may be pretty much “invisible” because most people think intense grief is reserved for immediate family members.
Another type of invisible grief is over a miscarriage or infant death. This is virtually never mentioned in conversations, even among close friends and family. And if someone says something, it can be hurting or inappropriate rather than comforting, such as “there will be other babies,” or some similar unthinking comment.
So the point is: There are many people out there suffering because they have lost a child, and many have lost adult children. They need our support. One’s child is always our child, no matter what age. And some of this grief is rather “invisible” for several reasons — sometimes people just do not realize how heavily the death is weighing on their friends or relatives. They just don’t understand.
Some of it is long-term grief that will never go away. I don’t believe we need to dwell on grief all the time, but do try to be as supportive and as understanding as you can, even though it’s not something people usually discuss in everyday conversation.
