Alicia Mathlin felt like her body was no longer hers after several rounds of debilitating cancer treatment — so she decided to stop and focus on living her life. Matt Galloway talks to Mathlin about that decision and asks medical experts about the push for ‘common-sense oncology,’ which weighs the pros and cons of certain treatments against a patient’s quality of life.
Matt Galloway cuts through a sea of choice to bring you stories that transcend the news cycle and expand your worldview. It’s a meeting place of perspectives with a fresh take on issues that affect Canadians today.
When a treatment buys a few weeks or months but comes with with a lot of side-effects, then the perspectives of people with cancer may differ, says Dr. Christopher Booth.
People may celebrate a 2-week improvement in survival without acknowledging costs
Tom Somerville’s decision to stop medical treatment for his end-stage cancer was a personal one.
Somerville, 62, was diagnosed with colon cancer in 2021 that later spread to his liver. He had six months of chemotherapy to slow down the cancer, which he said also left him exhausted with nausea.
The Kingston, Ont., resident decided to take a break from treatment to enjoy a trip with his wife to Victoria.
“Things that you cherish change, right?” Somerville said. “I used to love being out in the bush, but now it is just nice to have a sunny day, sit with my family [and] have visitors.”
Somerville said he came to terms with his prognosis and decided to enjoy the rest of the life he has left, extending the chemo break to a full stop. He said he was relieved to not “feel crappy” from the treatment anymore.
Tom Somerville, left, and his wife, Katherine Somerville, enjoyed a vacation in Victoria while he paused cancer treatments.
Dr. Christopher Booth, Somerville’s medical oncologist at Kingston General Hospital, supports him in his decision.
Booth is also part of a group of cancer doctors in Canada and the U.S. who say medications with marginal benefits are overused for patients in the end stage of the disease. The oncologists have started a campaign through their website, journal articles and podcasts encouraging honest conversations about use of the drugs with cancer patients, their families and experts.
The goal of what they call “common-sense oncology” is to prioritize treatments that meaningfully improve survival and quality of life. They aim to address what they see as problems in the field, such as a lack of critical thinking in oncology training, falling standards for drug approvals and avoidance of end-of-life discussions.
Balancing hope and reality
Booth said while there have been incredible advances in cancer treatments in his 20 years of practice, there’s also an unfortunate reality: cancer can’t always be cured. He strives to convey it in a compassionate and clear way.
“Balancing … providing information but also providing hope, that’s the art of cancer care,” Booth said. “Balancing hope and reality, balancing treatment and quality of life and side-effects, that’s the tough part of this job.”
Booth said he thinks everyone would agree that a treatment that helps a patient live for extra months or years is very helpful. But when a treatment buys weeks with a lot of side-effects, then patient perspectives may differ.
In part that’s because the cancer drugs that can shrink tumours alsocome with side-effects, including fatigue, vomiting and hair loss.
Not having treatment for cancer isn’t giving up, says Rachel Koven of Kingston, Ont.
Dr. Bishal Gyawali, a medical oncologist and associate professor at Queen’s University in Kingston, was motivated to press for changes when he noticed increased spending on treatments that don’t make much difference in patients’ lives while at the same time agencies didn’t put resources to what’s already been proven to work.
Gyawali previously treated people with cancer in Nepal, Japan, and the U.S. and saw the same trends there.
When attending oncology conferences, Gyawali said presenters would celebrate a two-week improvement in survival from a new treatment. Then, behind closed doors, other delegates would talk about the risks and costs of the drug.
Rachel Koven’s husband, Ken Koven, was diagnosed in his late 40s with adenocarcinoma, which starts in gland cells of the esophagus tube. His cancer was found where the esophagus meets the stomach.
The father and avid runner treated having cancer like a battle, his wife said. He had nine months of palliative chemotherapy that’s given to relieve the symptoms of cancer and improve quality of life, but not meant to cure the malignancy.
The cancer spread. He then underwent radiation to the brain in Kingston, Ont. In 2016, about 16 months after the diagnosis, he died at age 49.
“For my husband, his hope was anchored in treatment,” Koven said. “However well-rounded the discussions we had, he would have always chosen treatment, and I can’t begrudge him for that because that is where he believed his strength was.”
Now, Koven feels families should ask more questions of doctors, such as:
How much time does this treatment offer?
What are the real costs and benefits of the treatment?
Koven said not having treatment is sometimes seen as throwing in the towel, but that can be misleading.
Dr. Bishal Gyawali wants people to ask whether a two-week improvement in survival is meaningful.
“Not having treatment isn’t giving up,” Koven said. “Sometimes by having treatment you are giving up. You are giving up time with your family. You are giving up a quality of life necessarily for something you are not trading off any extra days.”
Koven wrote an essay in 2018 on her experience as her husband’s caregiver in the Canadian Medical Association Journal. At the time, she was motivated “to contribute to the best possible life in the face of death.”
Now Koven advocates for the oncology field to “recalibrate” toward an emphasis on what brings the person joy rather than only focusing on treating their cancer. Finding novel treatments that will really benefit patients is also important to her.
Seek meaningful answers
Dr. Elizabeth Eisenhauer ran more than 170 cancer drug trials in Canada, the U.S. and Europe. Now retired, Eisenhauer won the 2021 Canada Gairdner Wightman Award for investigating new cancer drugs and delivery approaches, including for Taxol, an anti-cancer treatment.
“It’s a good thing we are having so much interest in finding novel therapeutics for cancer,” Eisenhauer said. “But my goodness, let’s find the answers that matter to patients, too.”
Eisenhauer recalled how in the 1980s, scientists set an arbitrary number as a standard, worldwide indicator of safe tumour shrinkage for early clinical trial research.
After that, measuring whether a tumour grew by 20 per cent on a CT scan, the definition of progression, became an endpoint, or goal, for pharmaceutical companies running randomized trials, Eisenhauer said. Randomized trials are meant to guide whether a drug should be used as a standard of care by physicians.
“You have an answer sooner [using tumour shrinkage], but is it an answer that is meaningful?” she said.
Eisenhauer would like to see cancer clinical trials include more criteria.
“I think common-sense oncology from my perspective as a trialist needs to come from the perspective of trying to be sure that the trials that we design at least can capture the information that will be of importance to those discussions with the patient sitting in front of you.”
Eisenhauer said there aren’t a huge number of game changers in oncology every year, but many are available in Canada. She said costs to patients in terms of side-effects and time coming to the clinic also need to be considered.
Randomized trials are meant to guide whether a physician should use a chemotherapy agent as a standard of care.
Despite that, other Canadian researchers looking last year at use of treatments like chemotherapy or major surgery among more than 151,000 people who died found that a treatment was commonly given — in 41 per cent of cases — in the last 30 days of life but was potentially inappropriate.
So far, Gyawali said the common-sense oncology movement is gaining momentum worldwide and he’s received positive feedback from regulators, physicians, patients and payers.
Tom and Katherine Somerville now take time every day to enjoy moments together, like walking down to the pond near their farmhouse, going for a drive on a sunny day or listening to old tunes.
For them, quality of life includes loving glances.
“You appreciate that moment and you want to take it all in and those are the simple things that really are not so simple,” Katherine said. “They’re the important things.”
Writer Marianne Brooker reflects on the onset of her mother’s multiple sclerosis , the ‘broad-shouldered, red-eyed’ work of caring – and, after doctors and politicians had failed to help, her mother’s decision to hasten her death
By Marianne Brooker
In the early 1990s, a year or so after I was born, my mum and I swapped my grandparents’ spare room for a council flat on the other side of town. Our new neighbourhood was tucked away in the looming shadow of a Procter & Gamble factory, the air around us thick with soap. I remember the flat being palatial, maybe because I was small or because memory can render pleasure in square metres, expanding the space with the strength of feeling. In a photo taken there when I was four or so, I’m crouched on the patch of grass outside, hair in a ponytail and smiling straight at the camera. Ahead of my time, I’m wearing a black T-shirt, black jeans and tiny, flowery Dr Martens – unquestionably my mother’s daughter.
Growing up there, I had a small circle of imaginary friends, some of my own making and some borrowed from the world (David Bowie chief among them). Each evening, I’d find two plates laid out for my dinner: one for me and one for Louis-Lou, my favourite made-up friend. My mum would wait for me to finish and go to bed before eating the second, untouched plate herself. I don’t remember this, but she often told the story, proud of her generosity and fortitude. As adults we’d joke: “How hungry are you, and how about Louis-Lou?”
Once, we wrote a letter to ET, another of my imaginary friends. To my surprise, soon after, I found a reply waiting on the doorstep. I’d only just learned how to read and knew instantly that his language of bright pink shapes and symbols wasn’t mine. Curious, we took the letter to our neighbour, the only person we knew with an alien translation machine – or so my mum claimed. I watched as she summoned the message up on its screen, the hard drive gently whirring as it translated the otherworldly Wingdings into words. I lost the letter many years ago and don’t remember what it said, but I still wonder at it: the sheer invention, the shared belief.
Play like this engenders a politics of alliance, not transcending our material conditions (impossible), but transforming them, plate by plate, letter by letter, dream by dream. We carried our determined fantasies into adulthood. Growing older, we welcomed in all that was strange and pushed at the world’s limits, always summoning some secret power.
Marianne Brooker as a child. ‘I’m wearing a black T-shirt, black jeans and tiny, flowery Dr Martens – unquestionably my mother’s daughter.’
In 2009, when I was 17 and my mum was on the cusp of 40, she started to stumble and slur. Despite her protestations, the GP was sure it was “just vertigo”. One day, she came home from the hospital with an MRI scan in a large brown envelope and a diagnosis: “I reviewed this lady today,” the letter from her neurologist to her GP begins, before adopting an unfamiliar language: “The oligoclonal bands are positive in the CSF and I explained to her that she has the primary progressive form of multiple sclerosis. Naturally this is distressing for her.” Naturally. About 7,000 people are newly diagnosed with MS each year in the UK. About 10% of those are primary progressive: symptoms can be varied but deterioration is persistent, with no remission and – at the time of my mum’s diagnosis – no cure (new treatments are now becoming available).
In the years that followed, my mum felt the sharp edge of disability under austerity and still rose to meet life with more fight, ingenuity and generosity than I can properly grasp. Busying herself with baking cakes to raise money for the MS Society and abseiling from the Forth Bridge, she made a mission of her disease. Her sense of agency and community ran deep. She didn’t just fight for rights but for means: making and supporting friends through online forums; picketing outside her local benefits assessments centre; lobbying members of parliament for greater support.
Her determination to live a good life was only matched by her determination to die a good death. In 2014, we visited our MP in a canteen in Westminster. She met his posturing with rigour, fanning out pages of research across the table and forcing him to confront what life was like for so many disabled and dying people. I watched her describe what her life was becoming – trapped, fearful – and what it would be like for her to die: painful, slow. Outside, her fellow demonstrators rallied on Parliament Square, demanding a change in the law to allow terminally ill people the right to an assisted death. But the laws didn’t change.
Before you can understand how my mum died, you have to understand how she lived. Sick and poor, she made a workshop of herself. When her hair fell out, she learned about wig-making and tracked down cheaper versions of her favourite styles from foreign wholesalers. When her teeth fell out, she learned how to mould dentures from a bright white and pink polymer. She duct-taped her feet to a tricycle so that she could feel the wind in her hair. She made an eye patch from an old bra. Necessity, they say, is the mother of invention. But there’s something else in this mix – a defiant kind of self-love: each act a refusal, each invention a gift. These inventions were a means of survival, in material terms and in more personal, psychological, even spiritual terms; they gave her a sense of vocation, pleasure, creation and repair.
When she couldn’t afford her first electric wheelchair, her friends and I clubbed together to buy one on eBay. One friend made a seat cushion and armrests from a cosmic blue fabric, emblazoned with gold stars. We stuck a transfer to the wheelchair’s old, heavy battery that read powered by witchcraft. I have a photo of her whizzing up the hill by her cottage, a shooting star with her dog trotting beside her, her new wig shining in the evening sun. She couldn’t be contained or curtailed; she was a woman drawn to the DIY and the don’t fuck with me. More than symptom management, she created a pattern for a whole other way of life: world-making against the world; surviving within and against the material conditions of scarcity.
Eventually, denied a livable life and a legal right to die, my mum made a choice within and between the lines of law. A decade after her diagnosis, when she was 49 and I was 26, she decided to stop eating and drinking to end her suffering and her life. This process is referred to as VSED: voluntarily stopping eating and drinking.
I discovered her plan by accident, through something offhand she’d said to a friend. Shocked, I listened and protested, clutching at every straw: more care, better care; more money, more time. There had to be another way. She resisted: her quality of life felt too thin, the pain too intense, the threat of losing the capacity to communicate her wishes too great. I looked for clues, catalysts, the last straw: why now? I’m not proud of my first feelings. Shock gave way to hurt: is such a thing even possible, does our love for each other mean nothing? Disbelief gave way to suspicion: is it that bad, are you that sick? I turned her decision into a mirror: am I that bad? We’d talked often about her wishes, but never about stopping eating and drinking. It felt cruel, unimaginable.
We negotiated a pause, time to think and – I hoped – avoid so stark an ending. I insisted she speak with her MS nurse and her GP. The strange prospect of VSED tore me in two, cleaving my head from my heart. I wanted my mum, for her own sake, to be allowed to die; but I wanted her, for all the world, to never be dead. The first felt abstract, fodder for debating societies and newspaper articles; the second lived in my guts and on the surface of my skin. For my mum, of course, the reverse seemed true. Being dead was no great fear of hers, but being compelled to live was killing her.
Marianne Brooker’s mother in 2016: ‘I have a photo of her whizzing up the hill by her cottage, a shooting star with her dog trotting beside her, her new wig shining in the evening sun.’
Searching online, I learned that although assisted dying is illegal in the UK, voluntarily withdrawing from life-sustaining treatment, food and water is not. Doctors are obliged to support patients in the usual way as new symptoms resulting from dehydration emerge and dying quickens. By this method, no one could intervene to hasten her death and no one could intervene to save her life. VSED might allow her the ritual of dying in a time and place of her choosing, with all its bedside tenderness; we wouldn’t break the law, even if the law did little for us.
My discovery knotted in my chest, I started making arrangements to move back home indefinitely. I had three jobs to extricate myself from and excuses to make. For my favourite of the three, I cycled to a nearby neighbourhood to lead a reading group. That week, we started Maggie Nelson’s The Argonauts. In it, she describes going into labour, interspersing accounts of her experience with passages written by her partner Harry as he cared for his dying mother: birth maps on to death, each year of our lives like a palimpsest. It was the first time I’d read a narrative account of watching one’s mother die. Marking it up to teach, I underlined reminders for myself: “put a pillow under her knees”, tell her “that I loved her so much… you are surrounded in love”. Curious and selfish, I hoped that the book would reveal some great secret to me. Harry’s mother was “sick and broke and terrified”, not unlike my own. She chose her suburban condo in place of a Medicaid facility; “who could blame her?” She wanted to die where she had lived and to be crowded in by her familiar knick-knacks. Books like this enact their own quiet form of assistance; rallying around me like shields, windows and crutches.
I returned home in December, following some shorter weekend visits. Our pause had already stretched into months and I was sure we could stretch it further still. My mum’s cottage was piled with clutter. She lived in a time capsule of 70s melamine, torn lino and frayed net curtains. But she brightened it, filling every room with handmade treasures and trinkets. She expanded to fill each of its nooks and crannies, nurtured a sincere affection for its quirks and didn’t give an inch if anyone dare suggest she move somewhere on the ground floor, somewhere more accessible, more modern. “They’ll have to wheel me out of here,” she’d said for years. Insecure housing had chipped away at her sense of belonging, but this cottage was different; this home became hers, if only in her mind – and that’s no mean feat.
I loved it too: conversations at her dining table, deep into the night; the smell of freshly baked bread in the morning; the flower boxes lining the entrance ramp that a friend had built. The shade is well-known locally, marking buildings that are owned by one wealthy family. Every day, my mum’s green door insisted that her home did not belong to her. Every day, her ramp countered: in spirit, in belief, in every daily ritual of waking up and getting by – this was where she belonged, this house would hold her.
I remember one meal in particular, her almost-last. My mum took the lead, lighting the moment with the slow glow of mutual appreciation. Too often, I’d cooked for rather than with her, an admission that catches in my throat – what a rookie error. This time, I followed her instructions attentively: waiting to be guided by her, letting go of the things I’d do a little differently. We made a vegan quiche with chickpea flour, smoked vegan cheddar, onions, peppers, and what we affectionately called “fanny flakes” – nutritional yeast high in vitamin B12.
Care is broad-shouldered, red-eyed work: labouring against bedsores and cramps, lifting, cleaning, feeding. Like all things, care can break. In 2018, a survey conducted by the trade union Unison found that one in five surveyed care workers weren’t given the time to help their clients to the toilet. A similar number did not have time to prepare food or drinks. Nearly half said that they did not have time to support people “with dignity and compassion”. My mum wasn’t making her choice in a vacuum: there was no world in which she could grow older and sicker without struggle.
Marianne Brooker.
I was surprised to learn that hospices are only funded in part by the NHS – 30-40% in 2023. For years, their statutory income has been cut or frozen. For the rest they are reliant on donations, sponsorship, lotteries, legacies, grant fundraising and, of course, charity shops. Countless hospices advertise “sponsor a nurse” programmes, with small regular donations funding the cost of a shift or a palliative medicine. There’s a strange arithmetic to charity like this: your donation might help one or five or 10 patients in their final days of life. My mum was facing her voluntary death, watched over – in part – by volunteer “night sitters”, nursed by people whose work is funded through voluntary donations. The care we received was faultless (I say we, because I felt cared for too, by these people who listened, without judgment). But it could only alleviate so much.
Our last Christmas was slower and quieter. Pain clamped around her stomach and the lower part of her back or shot through her legs in sharp spasms. I associate that word with shuddering movement, but her spasms weren’t visible in that way. The movement happened below the surface, like an extreme cramp that often brought her to tears.
On Christmas Eve, she lay on the living room floor, making herself incredibly small. I’d seen pain crease and curl in her body before – winces, frowns, sharp inhalations of breath. But I’d not heard it like this, wailing out. I just sat there, my arm across her back. I got as close to this feeling as I could but couldn’t stop it, couldn’t even soften it. She took the heaviest pain relief she could and it knocked her straight out. She woke up the next afternoon, just in time for me to scoop out the fluffy middles of roast potatoes so that she could eat them.
Empathy teaches us that we can feel as one another – one’s own skin shakes, head aches and eyes water. But this attenuated feeling announces a distance between the person in pain and the person feeling its ripple. There’s a space between the person whose pain is intrinsic, from the nerves outwards, and the person whose pain is relational, from the world inwards. I wasn’t gripped by pain in the way that my mum was, but I chose to sit with it, with her. I couldn’t learn her pain from books; I couldn’t catch it from touch. But still it moved me and moved in this way, I could begin to accept her choice.
Pain renewed her resolve. For 20 days, we were suspended in an interval, a middle space between living and dying. At this temporary remove, my mum stopped eating and drinking and I found my way around a new type of work: navigating and advocating; lifting and bathing; checking dosages and picking up prescriptions; paying two lots of rent – hers and mine – as we transformed her home into a hospice. This interval was secret and particular – something between us – but common, too, an exception that exposed a fundamental condition of being a human in the world: we are interdependent, both separate from and reliant upon others.
Readers blamed the predominantly for-profit nature of American medicine and the long-term care industry for systematically depleting the financial resources of older people.
Thousands of people shared their experiences and related to the financial drain on families portrayed in the Dying Broke series.
Thousands of readers reacted to the articles in the Dying Broke series about the financial burden of long-term care in the United States. They offered their assessments for the government and market failures that have drained the lifetime savings of so many American families. And some offered possible solutions.
In more than 4,200 comments, readers of all ages shared their struggles in caring for spouses, older parents and grandparents. They expressed their own anxieties about getting older and needing help to stay at home or in institutions like nursing homes or assisted-living facilities.
Many suggested changes to U.S. policy, like expanding the government’s payments for care and allowing more immigrants to stay in the country to help meet the demand for workers. Some even said they would rather end their lives than become a financial burden to their children.
Many readers blamed the predominantly for-profit nature of American medicine and the long-term care industry for depleting the financial resources of older people, leaving the federal-state Medicaid programs to take care of them once they were destitute.
“It is incorrect to say the money isn’t there to pay for elder care,” Jim Castrone, 72, a retired financial controller from Placitas, N.M., commented. “It’s there, in the form of profits that accrue to the owners of these facilities.”
“It is a system of wealth transference from the middle class and the poor to the owners of for-profit medical care, including hospitals and the long-term care facilities outlined in this article, underwritten by the government,” he added.
But other readers pointed to insurance policies that, despite limitations, had helped them pay for services. And some relayed their concerns that Americans were not saving enough and were unprepared to take care of themselves as they aged.
“It was a long, lonely job, a sad job, an uphill climb.”
Marsha Moyer
What other nations provide
Other countries’ treatment of their older citizens was repeatedly mentioned. Readers contrasted the care they observed older people receiving in foreign countries with the treatment in the United States, which spends less on long-term care as a portion of its gross domestic product than do most wealthy nations.
Marsha Moyer, 75, a retired teaching assistant from Memphis, said she spent 12 years as a caregiver for her parents in San Diego County and another six for her husband. While they had advantages many don’t, Ms. Moyer said, “it was a long, lonely job, a sad job, an uphill climb.”
In contrast, her sister-in-law’s mother lived to 103 in a “fully funded, lovely elder care home” in Denmark during her last five years. “My sister-in-law didn’t have to choose between her own life, her career and helping her healthy but very old mother,” Ms. Moyer said. “She could have both. I had to choose.”
Birgit Rosenberg, 58, a software developer from Southampton, Pa., said her mother had end-stage dementia and had been in a nursing home in Germany for more than two years. “The cost for her absolutely excellent care in a cheerful, clean facility is her pittance of Social Security, about $180 a month,” she said. “A friend recently had to put her mother into a nursing home here in the U.S. Twice, when visiting, she has found her mother on the floor in her room, where she had been for who knows how long.”
Birgit Rosenberg, 58, of Southampton, Pa.
Brad and Carol Burns moved from Fort Worth, Texas, in 2019 to Chapala, Jalisco, in Mexico, dumping their $650 a month long-term care policy because care is so much more affordable south of the border. Mr. Burns, 63, a retired pharmaceutical researcher, said his mother lived just a few miles away in a memory care facility that costs $2,050 a month, which she can afford with her Social Security payments and an annuity. She is receiving “amazing” care, he said.
“As a reminder, most people in Mexico cannot afford the care we find affordable and that makes me sad,” he said. “But their care for us is amazing, all health care, here, actually. At her home, my mom, they address her as Mom or Barbarita, little Barbara.”
Insurance policies debated
Many, many readers said they could relate to problems with long-term care insurance policies, and their soaring costs. Some who hold such policies said they provided comfort for a possible worst-case scenario while others castigated insurers for making it difficult to access benefits.
“They really make you work for the money, and you’d better have someone available who can call them and work on the endless and ever-changing paperwork,” said Janet Blanding, 62, a technical writer from Fancy Gap, Va.
Derek Sippel, 47, a registered nurse from Naples, Fla., cited the $11,000 monthly cost of his mother’s nursing home care for dementia as the reason he bought a policy. He said he pays about $195 a month with a lifetime benefit of $350,000. “I may never need to use the benefit(s), but it makes me feel better knowing that I have it if I need it,” he wrote. He said he could not make that kind of money by investing on his own.
“It’s the risk you take with any kind of insurance,” he said. “I don’t want to be a burden on anyone.”
Pleas for more immigrant workers
One solution that readers proposed was to increase the number of immigrants allowed into the country to help address the chronic shortage of long-term care workers. Larry Cretan, 73, a retired bank executive from Woodside, Calif., said that over time, his parents had six caretakers who were immigrants. “There is no magic bullet,” he said, “but one obvious step — hello people — we need more immigrants! Who do you think does most of this work?”
Victoria Raab, 67, a retired copy editor from New York, said that many older Americans must use paid help because their grown children live far away. Her parents and some of their peers rely on immigrants from the Philippines and Eritrea, she said, “working loosely within the margins of labor regulations.”
“These exemplary populations should be able to fill caretaker roles transparently in exchange for citizenship because they are an obvious and invaluable asset to a difficult profession that lacks American workers of their skill and positive cultural attitudes toward the elderly,” Ms. Raab said.
“For too many, the answer is, ‘How can we hide assets and make the government pay?’”
Mark Dennen
Federal fixes sought
Others called for the federal government to create a comprehensive national long-term care system, as some other countries have. In the United States, federal and state programs that finance long-term care are mainly available only to the very poor. For middle-class families, sustained subsidies for home care, for example, are fairly nonexistent.
“I am a geriatric nurse practitioner in New York and have seen this story time and time again,” Sarah Romanelli, 31, said. “My patients are shocked when we review the options and its costs. Medicaid can’t be the only option to pay for long-term care. Congress needs to act to establish a better system for middle-class Americans to finance long-term care,” she said.
John Reeder, 76, a retired federal economist from Arlington, Va., called for a federal single-payer system “from birth to senior care in which we all pay and profit-making removed.”
John Reeder, 76, at home in Arlington, Va.
Mark Dennen, 69, from West Harwich, Mass., said people should save more rather than expect taxpayers to bail them out. “For too many, the answer is, ‘How can we hide assets and make the government pay?’ That is just another way of saying, ‘How can I make somebody else pay my bills?’” he said, adding: “We don’t need the latest phone/car/clothes, but we will need long-term care. Choices.”
<h2″>Questioning life-prolonging procedures
A number of readers condemned the country’s medical culture for pushing expensive surgeries and other procedures that do little to improve the quality of people’s few remaining years.
Dr. Thomas Thuene, 60, a consultant in Roslindale, Mass., described how a friend’s mother who had heart failure was repeatedly sent from the elder care facility where she lived to the hospital and back, via ambulance. “There was no arguing with the care facility,” he said. “However, the moment all her money was gone, the facility gently nudged my friend to think of end-of-life care for his mother. It seems the financial ruin is baked into the system.”
Joan Chambers, 69, an architectural draftsperson from Southold, N.Y., said that during a hospitalization on a cardiac unit she observed many fellow patients “bedridden with empty eyes,” awaiting implants of stents and pacemakers.
“I don’t want to be a burden on anyone.”
Derek Sippel
“I realized then and there that we are not patients, we are commodities,” she said. “Most of us will die from heart failure. It will take courage for a family member to refuse a ‘simple’ procedure that will keep a loved one’s heart beating for a few more years but we have to stop this cruelty.
“We have to remember that even though we are grateful to our health care professionals, they are not our friends, they are our employees and we can say no.”
One physician, Dr. James D. Sullivan, 64, from Cataumet, Mass., said he planned to refuse hospitalization and other extraordinary measures if he suffered from dementia. “We spend billions of dollars, and a lot of heartache, treating demented people for pneumonia, urinary tract infections, cancers, things that are going to kill them sooner or later, for no meaningful benefit,” Dr. Sullivan said. “I would not want my son to spend his good years, and money, helping to maintain me alive if I don’t even know what’s going on,” he said.
Thoughts on assisted dying
Others went further, declaring they would rather arrange for their own deaths rather than suffer in greatly diminished capacity. “My long-term care plan is simple,” said Karen D. Clodfelter, 65, a library assistant from St. Louis. “When the money runs out I will take myself out of the picture.” Ms. Clodfelter said she helped care for her mother until her death at 101. “I’ve seen extreme old age,” she said, “and I’m not interested in going there.”
Some suggested that assisted dying should be a more widely available option in a country that takes such poor care of its elderly. Meridee Wendell, 76, from Sunnyvale, Calif., said: “If we can’t manage to provide assisted living to our fellow Americans, could we at least offer assisted dying? At least some of us would see it as a desirable solution.”
Larry McMahon, who turns 80 this month, is weighing whether to undergo a major surgery. Over the past five years, his back pain has intensified. Physical therapy, muscle relaxants, and injections aren’t offering relief.
“It’s a pain that leaves me hardly able to do anything,” he said.
Should McMahon, a retired Virginia state trooper who now lives in Southport, North Carolina, try spinal fusion surgery, a procedure that can take up to six hours? (Eight years ago, he had a lumbar laminectomy, another arduous back surgery.)
“Will I recover in six months — or in a couple of years? Is it safe for a man of my age with various health issues to be put to sleep for a long period of time?” McMahon asked, relaying some of his concerns to me in a phone conversation.
Older adults contemplating major surgery often aren’t sure whether to proceed. In many cases, surgery can be lifesaving or improve a senior’s quality of life. But advanced age puts people at greater risk of unwanted outcomes, including difficulty with daily activities, extended hospitalizations, problems moving around, and the loss of independence.
I wrote in November about a new study that shed light on some risks seniors face when having invasive procedures. But readers wanted to know more. How does one determine if potential benefits from major surgery are worth the risks? And what questions should older adults ask as they try to figure this out? I asked several experts for their recommendations. Here’s some of what they suggested.
What’s the goal of this surgery? Ask your surgeon, “How is this surgery going to make things better for me?” said Margaret “Gretchen” Schwarze, an associate professor of surgery at the University of Wisconsin School of Medicine and Public Health. Will it extend your life by removing a fast-growing tumor? Will your quality of life improve by making it easier to walk? Will it prevent you from becoming disabled, akin to a hip replacement?
If your surgeon says, “We need to remove this growth or clear this blockage,” ask what impact that will have on your daily life. Just because an abnormality such as a hernia has been found doesn’t mean it has to be addressed, especially if you don’t have bothersome symptoms and the procedure comes with complications, said Drs. Robert Becher and Thomas Gill of Yale University, authors of that recent paper on major surgery in older adults.
If things go well, what can I expect? Schwarze, a vascular surgeon, often cares for patients with abdominal aortic aneurysms, an enlargement in a major blood vessel that can be life-threatening if it bursts.
Here’s how she describes a “best case” surgical scenario for that condition: “Surgery will be about four to five hours. When it’s over, you’ll be in the ICU with a breathing tube overnight for a day or two. Then, you’ll be in the hospital for another week or so. Afterwards, you’ll probably have to go to rehab to get your strength back, but I think you can get back home in three to four weeks, and it’ll probably take you two to three months to feel like you did before surgery.”
Among other things people might ask their surgeon, according to a patient brochure Schwarze’s team has created: What will my daily life look like right after surgery? Three months later? One year later? Will I need help, and for how long? Will tubes or drains be inserted?
If things don’t go well, what can I expect? A “worst case” scenario might look like this, according to Schwarze: “You have surgery, and you go to the ICU, and you have serious complications. You have a heart attack. Three weeks after surgery, you’re still in the ICU with a breathing tube, and you’ve lost most of your strength, and there’s no chance of ever getting home again. Or, the surgery didn’t work, and still you’ve gone through all this.”
“People often think I’ll just die on the operating table if things go wrong,” said Dr. Emily Finlayson, director of the UCSF Center for Surgery in Older Adults in San Francisco. “But we’re very good at rescuing people, and we can keep you alive for a long time. The reality is, there can be a lot of pain and suffering and interventions like feeding tubes and ventilators if things don’t go the way we hope.”
Given my health, age, and functional status, what’s the most likely outcome? Once your surgeon has walked you through various scenarios, ask, “Do I really need to have this surgery, in your opinion?” and “What outcomes do you think are most likely for me?” Finlayson advised. Research suggests that older adults who are frail, have cognitive impairment, or other serious conditions such as heart disease have worse experiences with major surgery. Also, seniors in their 80s and 90s are at higher risk of things going wrong.
“It’s important to have family or friends in the room for these conversations with high-risk patients,” Finlayson said. Many seniors have some level of cognitive difficulties and may need assistance working through complex decisions.
What are the alternatives? Make sure your physician tells you what the nonsurgical options are, Finlayson said. Older men with prostate cancer, for instance, might want to consider “watchful waiting,” ongoing monitoring of their symptoms, rather than risk invasive surgery. Women in their 80s who develop a small breast cancer may opt to leave it alone if removing it poses a risk, given other health factors.
Because of Larry McMahon’s age and underlying medical issues (a 2021 knee replacement that hasn’t healed, arthritis, high blood pressure), his neurosurgeon suggested he explore other interventions, including more injections and physical therapy, before surgery. “He told me, ‘I make my money from surgery, but that’s a last resort,” McMahon said.
What can I do to prepare myself? “Preparing for surgery is really vital for older adults: If patients do a few things that doctors recommend — stop smoking, lose weight, walk more, eat better — they can decrease the likelihood of complications and the number of days spent in the hospital,” said Dr. Sandhya Lagoo-Deenadayalan, a leader in Duke University Medical Center’s Perioperative Optimization of Senior Health program.
When older patients are recommended to POSH, they receive a comprehensive evaluation of their medications, nutritional status, mobility, preexisting conditions, ability to perform daily activities, and support at home. They leave with a “to-do” list of recommended actions, usually starting several weeks before surgery.
If your hospital doesn’t have a program of this kind, ask your physician, “How can I get my body and mind ready” before having surgery, Finlayson said. Also ask: “How can I prepare my home in advance to anticipate what I’ll need during recovery?”
What will recovery look like? There are three levels to consider: What will recovery in the hospital entail? Will you be transferred to a facility for rehabilitation? And what will recovery be like at home?
Ask how long you’re likely to stay in the hospital. Will you have pain, or aftereffects from the anesthesia? Preserving cognition is a concern, and you might want to ask your anesthesiologist what you can do to maintain cognitive functioning following surgery. If you go to a rehab center, you’ll want to know what kind of therapy you’ll need and whether you can expect to return to your baseline level of functioning.
During the covid-19 pandemic, “a lot of older adults have opted to go home instead of to rehab, and it’s really important to make sure they have appropriate support,” said Dr. Rachelle Bernacki, director of care transformation and postoperative services at the Center for Geriatric Surgery at Brigham and Women’s Hospital in Boston.
For some older adults, a loss of independence after surgery may be permanent. Be sure to inquire what your options are should that occur.
Like taxes, death is still a certainty. But in America, the end of life isn’t what it used to be.
Today, one in five Americans lives in a state that permits medical aid in dying, sometimes simply called assisted dying. The idea is terminally ill individuals who have six months or less to live can apply for a medically assisted death to limit their suffering. And if they meet the criteria, they can have some say when they will take their last breath.
It’s been nearly 25 years since the country’s first assisted death law — Oregon’s Death With Dignity Act — went into effect. And since then, eight other states — Washington, Vermont, California, Colorado, Hawaii, New Jersey, Maine and New Mexico, as well as Washington, D.C., have enacted their own versions. What all jurisdictions with medical aid in dying have in common is the requirement that the patients must be of sound mind, have less than six months to live and they must be able to self-administer the lethal medication, prescribed by a physician, to end their lives.
Eleven other states have introduced medical aid in dying bills during the 2021-22 legislative session. It’s a growing movement that’s largely under the radar, much as death is in this society.
Assisted death is “not the path of least resistance. For many it’s the path of most resistance.”
In the latest survey by Susquehanna Polling & Research, two out of three voters (67%) said if they “had an incurable, terminal illness, still had a sound mind but less than six months to live and met the legal requirements,” they would want the option of medical aid in dying.
As the baby boomers age, medical aid in dying is expected to be an even bigger issue in the years ahead.
Anita Hannig, associate professor of anthropology at Brandeis University in Waltham, Massachusetts, says assisted death is “not the path of least resistance. For many it’s the path of most resistance.”
Indeed, the assisted dying laws in the ten U.S. jurisdictions are among the most restrictive in countries with such laws. That hasn’t stopped opposition from some religious and right-to-life groups, among others.
For her new book, “The Day I Die: The Untold Story of Assisted Dying in America,” Hannig spent hundreds of hours over five years on the frontlines of assisted dying in the Pacific Northwest, including witnessing several deaths among those who availed themselves of the law.
Next Avenue: You’ve taken a very deep dive into assisted dying in America, a world few families have experienced. As a cultural anthropologist, you’ve gone from researching birth and the beginning of life in Ethiopia to the opposite end of the life cycle. Why the shift?
Anita Hannig: I was showing a film called ‘How to Die in Oregon’ in my Medicine and Religion class at Brandeis. It’s such a lovely documentary about the law in Oregon and about all those assisted dying volunteers who go and help people die. And I was immediately hooked and thought, wow, birth and death are like bookends. You have home births and home deaths. And so I was curious to go over to the other side. I was very surprised by what I found.
You must have a unique perspective on birth and death as an anthropologist studying assisted dying and as a new mother who also lost a child during an earlier pregnancy.
Definitely. We’re so used to thinking about birth and death as opposites when they’re actually very similar. One of the main figures in my book, a former nurse and longtime assisted dying volunteer in Oregon, Derianna Mooney, taught me that birth and death are both sacred transitions — from one state of being to another, from nonbeing into being and being into nonbeing. And culturally we revere one, but we shun the other.
“I think part of the issue is that we have all the technology now, but our ethical and moral compass hasn’t really caught up with how we should use it.”
As a new mother, I can see people’s eyes light up when they watch us stroll by with our oversized pram. There’s so much positive attention. And all of this has to do with the fact that we love the beginning. It holds so much promise.
And yet we’re so afraid of the end. Similar to a birth, people do need help at the end of life. I love when Derianna says, “You’re going to the gate with them and you are letting them go, but you’re nurturing them through the gate.” What a beautiful vision.
One of the vexing issues surrounding death in our country especially is the role high-tech medicine plays in extending life — even when a longer life doesn’t always promise more quality. Is the assisted dying movement a sign that technology is frequently not making our final years better?
Yes. I think part of the issue is that we have all the technology now, but our ethical and moral compass hasn’t really caught up with how we should use it. And it’s not just in the United States. My 87-year-old grandmother, who passed away in Germany in March, underwent radiation for her breast cancer when she was two weeks away from dying. I’m flabbergasted when I think about why we offer this extremely invasive treatment to somebody who is close to dying. Thankfully, she was soon admitted to a beautiful hospice by a lake to spend what became her final days.
I got interested in this topic when a friend’s husband, suffering from Parkinson’s and no longer able to feed himself, was forced to starve himself to death since he lived in Maryland, a state without a medical aid in dying law. For people consigned to such a horrific death, can a doctor truly say they are following the Hippocratic Oath that tells physicians to do no harm?
That’s exactly the conclusion that a lot of doctors who help patients die come to because in that case doing nothing — such as not helping somebody die — is doing harm. Physicians who are at the forefront of assisted dying say their task is to prevent suffering. And how you prevent suffering in many of these cases is to help somebody die. I always come back to this question: Who is telling these patients that they need to hang on? For what? For whom? Sometimes they themselves are ready to go, but they want to stick around for the family or because there’s a societal expectation to fight.
At the beginning of your book, you almost took my breath away when you were helping one of the volunteers opening the capsules of Seconal and pouring powder into a bowl in one room while the patient, Ken, was waiting in the next room to receive the lethal medication. What were your thoughts as you prepared the medicinal mix that you knew would end a man’s life?
It’s a really good question. Anthropologists have a tool in our toolbox called “participant observation.” And that means you’re never just an impartial observer because your presence alone already changes what’s happening in the room. In order to really relate and put ourselves and the reader into the shoes of these people, you have to bring yourself into the situation wholeheartedly and authentically. And often that means becoming a participant in what is happening.
It’s an extreme privilege to be invited into that kind of intimate space. So, it would have felt very off- putting to just be sitting in the corner taking notes. Everybody in the room is carrying this person over the threshold together. And so you just kind of take your cues from what’s happening.
You don’t want to feel like a voyeur?
Exactly. You want to be in the moment and going through all the emotions other people are going through. It’s a different way of being present that allows you to faithfully experience the death alongside the people whose loved one is dying.
But this must have been a difficult moment for you. In your book, you described “a heavy sense of transgression rise up inside” of you as prepared the lethal medication.
You know what I think it is? It’s the feeling of internalizing some of the stigma that we carry and some of the taboo with which we treat death. And so being part of somebody’s death in this participatory way makes you ask, ‘Am I doing something wrong? Am I, in some bizarre way, enabling that person to die?’
But even if I hadn’t been there, things would have gone probably in a very similar way. I think it’s the cultural baggage that we feel around what it means to hasten the end of your life. Everyone there knew this is what Ken wanted. He chose this with one-hundred percent of his cognitive abilities. His wish was to be delivered from this world and you are enabling that transition.
Among the deaths you researched but didn’t witness was that of Louis, who was an outlier. His experience turned into a nightmare for the person who supervised his assisted death. Louis actually woke up after taking the lethal medication. What happened?
“Everybody in the room is carrying this person over the threshold together.”
Medicine is a human art and as an art, is prone to failure. And it just goes back to the ways the laws are written. They insist on self-administration. But when you are limited that way, you’re going to run into a bunch of problems such as people with gastrointestinal issues who can’t quite absorb the medication. And then you have people who can’t physically self-administer, like a lot of folks with ALS or other illnesses that affect their mobility or their hand range or who can’t drink something on their own or push the syringe on their feeding tube.
And people are getting a little more innovative with things like rectal catheters now, but there’s still a requirement that this has to be an act of volition — you have to be the one to push the plunger on your feeding tube or catheter, what have you. And in almost all other countries, you don’t have that requirement. A doctor can administer if you’re unable to administer yourself.
So after immersing yourself in this world of assisted dying for five years, what‘s your takeaway from this experience?
As a society, we have to make a concerted effort to become less alienated from death and dying. Of course, one could ask how alienated are we when the biggest newspaper in the country, the New York Times, can post images of corpses in Ukraine on its front page? But that doesn’t create closeness or connection. That just creates more fear.
Ideally, I think everybody should have to take a class on death and dying that could cover estates, hospice, and what life-extending procedures there are. In my death and dying class, I talk about people in South Korea who fill an entire gymnasium with coffins and the public comes in and gets inside the coffin to simulate what it would be to die. And they come out of this experience with a totally new zest for life.
This is what contemplating our mortality can do for us. It can take away some of the fear and some of the surprise when a loved one passes away because you will have thought about it in advance. I’m not saying assisted death is the way to go for everyone. We really need to pay more attention to end-of-life issues and prepare for the inevitable and have all of that be less stigmatized.
As the country’s pandemic death toll inches toward one million, has America’s attitude toward death changed at all?
Certainly it’s brought death into the lives of lots of people but not in a way to make them feel more connected to death. Many people weren’t able to see their loved ones in assisted living homes or couldn’t go to the funeral or they weren’t allowed to be present at a nursing home.
When I see the way that we’re tumbling back into life as it was before the pandemic, I don’t know that we’ve really thought critically about death. We just have this big fear-based relationship with death and it’s not lifting the curtain, really. I think people are thrilled to have escaped the pandemic. They see themselves on the other end of that mostly unscathed.
They dodged a bullet?
That’s exactly what it is. But I don’t think it’s made us really contemplate our mortality that much more.
So what will give you a signal that something has shifted in the American attitude toward death?
That people don’t automatically associate the topic of death with fear. And when people begin to realize what I witnessed and write about in the book — some of the empowerment that can come from determining the end of your life and even some of the joy. I hope I’m not out of line to call it joy. When I think of the deaths I witnessed, they weren’t unambiguously sad. There were also serene and heartfelt moments, some laughter and families felt at ease because their loved one wanted to die and they were helping them.
And those who chose to end their lives wanted their death to resonate beyond themselves and their families. Jean, one of the people whose death I witnessed, unbelievably spent the last few minutes of her life promoting her chosen way to die. I still remember her words:
“There are all these baby boomers who will want a better way to die. Our society doesn’t recognize that yet. They will someday.”
William Husel hugs his wife, Mariah Baird, after the doctor was found not guilty on 14 counts of murder in connection with fentanyl overdose deaths of former patients on April 20 in Columbus, Ohio.
William Husel, an Ohio doctor who was accused of killing 14 patients with what prosecutors described as “wildly excessive” doses of fentanyl between 2015 and 2018, was acquitted on all counts of murder Wednesday, concluding one of the most significant murder cases of its kind against a health-care professional.
Husel, a onetime physician of the year trained at the Cleveland Clinic, faced one count of murder for each of the 14 critically ill patients he was accused of killing. The jury deliberated for seven days before finding him not guilty on all 14 counts in what was one of the largest murder trials in Ohio history.
He had been charged with causing or hastening their deaths amid a period of lax oversight of fentanyl at Mount Carmel West, a Catholic hospital in Columbus. Husel would have faced life in prison with just one guilty verdict.
While the synthetic opioid is significantly more powerful than morphine and has wreaked havoc on American streets, it can provide pain relief in medical settings that is crucial to end-of-life care. The alleged victims in the Ohio case suffered critical medical conditions including overdoses, cancer, strokes and internal bleeding. Prosecutors acknowledged that all were being kept alive on ventilators and that many of them were dying.
“In truth, William Husel was an innocent man, and thank goodness the justice system prevailed,” Jose Baez, one of Husel’s defense attorneys, told reporters.
The 46-year-old’s acquittal came after a two-month trial that triggered a debate on end-of-life medical care. Husel and Baez argued in the trial that the doctor offered comfort care for dying patients and was not trying to kill them. They pointed out that the doctor’s actions did not occur in secret — nurses were the ones to administer the doses — and alleged that hospital officials made Husel the villain after realizing the systemic failures at play. The fallout over the allegations at Mount Carmel West had repercussions: the firing of 23 employees; the resignation of the hospital’s chief executive, chief clinical officer and chief pharmacy officer; and Medicare and Medicaid funding for the institution was put in jeopardy.
But Franklin County prosecutors alleged that Husel gave patients amounts of the opioid far beyond the norm. He ordered 1,000 micrograms of fentanyl for multiple patients — about 10 times the recommended dosage, according to prosecutors. One of the patients, 82-year-old Melissa Penix, was given 2,000 micrograms of fentanyl — 20 vials of it, all at once. The amount of fentanyl given to her, which was about 20 times the recommended dosage, depleted the entire supply of the medication available in the ICU that night, Franklin County Assistant Prosecutor David Zeyen told jurors.
Joel Zivot, an associate professor of anesthesiology and surgery at Emory University and the sole witness called by Husel’s defense, told The Washington Post that he was relieved the jury determined that disease, not fentanyl, caused the 14 deaths.
“Physicians intend to provide comfort at the end of a person’s life, and the idea that the intent was murder simply by the action by giving someone pain control was unprecedented and ultimately shown to be a false accusation,” Zivot said.
The Franklin County Prosecutor’s Office released a statement commending the prosecution and defense for their work, adding that the office accepted the jury’s finding Husel not guilty.
“The Jury after review of all the evidence was not convinced beyond a reasonable doubt that William Husel was guilty of any charges submitted to them,” the prosecutor’s office said in a statement. “We accept the jury verdict.”
The case came to light in the fall of 2018 when, Mount Carmel West has said, pharmacists voiced concerns about doses ordered by Husel, an anesthesiologist who had been employed at the hospital about five years and worked on the skeleton crew of overnight intensive care. He was well liked in the ICU and known for his willingness to teach those who worked alongside him.
In total, at least 35 people may have been given excessive doses, the hospital said after a review. All of them died; the hospital said five might have had a chance to improve. Officials alerted police, and Husel was charged in June 2019 with 25 counts of murder. Prosecutors dropped 11 of the charges.
During closing arguments in the trial this month, Zeyen argued that even if the patients were dying and Husel thought he was acting in their best interest, killing them still constitutes as a crime.
“That is what you do to sick animals. That’s fine in veterinary science,” Zeyen said. “That is not fine in the ICU at Mount Carmel.”
Baez responded by referring to Husel’s pledging to provide comfort to the patients, noting that the doctor had much to lose.
“Why would this man risk his family, his career, 17 years of trying to be a doctor, every single thing he has worked for, to hasten someone’s death or to kill them?” Baez asked during closing arguments.
Zivot told The Post that he reviewed each of the cases and concluded that Husel offered the kind of care that any doctor would have provided for end-of-life treatment.
“Dr. Husel did the thing that doctors do in that he provided some fentanyl for the purpose of mitigating what we imagine to be the pain of dying, and that’s it,” he said. “We cannot know what it feels like to die; we can only imagine it. We fear it, and we are concerned about that. If we can’t stop someone from dying, at least we can reduce the pain associated with dying.”
When Common Pleas Court Judge Michael Holbrook read each verdict of not guilty, Husel’s wife, Mariah Baird, watched and smiled before hugging her sister, reported the Columbus Dispatch. After all 14 counts came back as not guilty, Husel wiped away tears.
Even with his acquittal in the murder trial, Husel still faces more than 10 lawsuits from the families of patients. Several of the families have settled lawsuits worth about $13.5 million, according to NBC News.
Baez emphasized to reporters that he felt “terrible for all of the patients’ families suffering again.” But, he said, he hoped they took comfort knowing that a jury concluded that it was their loved ones’ critical illnesses, and not the opioid, that resulted in their deaths.
“Hopefully they take solace that their loved ones’ last moments were in peace and not as a result of a doctor being afraid to make them comfortable,” he said
