Tag: End of Life Care

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Cancer patients often want ‘one more round.’

— Should doctors say no?

Studies show that when cancer returns, patients are often quite willing to receive toxic treatments that offer minimal potential benefit.

By by Mikkael A. Sekeres, MD

My patient was in his early 30s and his leukemia had returned again following yet another round of treatment.

He was a poster child for the recently reported rise in cancer rates in the young, and had just asked me what chemotherapy cocktail I could devise for him next, to try to rid him of his cancer.

I hesitated before answering. Oncologists are notorious for always being willing to recommend to our patients one more course of treatment, even when the chances of success are negligible.

One grim joke even poses the question, “Why are coffins nailed shut?” The answer: “To keep oncologists from giving another round of chemotherapy.”

This unflattering stereotype is unfortunately backed by data. In one analysis of patients with a cancer diagnosis treated at one of 280 cancer clinics in the United States between 2011 and 2020, 39 percent received cancer therapy within 30 days of death, and 17 percent within two weeks of dying, with no decrease in those rates from 2015 to 2019.

My patient had received his leukemia diagnosis five years earlier, and initially, following chemotherapy, his cancer had entered a remission. He and his parents were farmers from Latin America and relocated at the time to the United States to focus on his treatment. When the leukemia returned after a year, he underwent a bone-marrow transplant, and that seemed to do the trick, at least for a while.

But then it reared its ugly head a couple of years later, and we worked to slay it with yet more chemotherapy and another transplant.

That victory was short-lived, though, and multiple rounds of unsuccessful treatment later, here we were. The last course had decimated his blood counts, landing him in the hospital with an infection, a bad one that he had barely survived.

Does it help patients live longer or better?

Giving chemotherapy toward the end of life would be justifiable if we benefited our patients by enabling them to live longer, or live better. While that’s our hope, it often isn’t the case.

Other studies have shown that patients with cancer who receive treatment at the end of life are more likely to be admitted to the hospital and even the intensive care unit, less likely to have meaningful goals-of-care discussions with their health-care team, and have worse quality and duration of life.

Recognizing this, the Centers for Medicare & Medicaid Services has identified giving chemotherapy within two weeks of death as a poor-quality indicator that may adversely affect payments to hospitals. As a consequence, cancer doctors are discouraged from offering treatment to patients at the end of life, and can get in trouble with hospital administrators for doing so.

Despite the CMS measure, though, over the past three years the percentage of patients treated at the end of life hasn’t changed much, with one recent study actually showing an increase in patients treated.

Why do we do it? Perhaps optimism is part of our nature, and what draws us to a career in oncology. I focus on the positive, and that may actually help my patients. Other studies have shown that optimism in people with cancer is associated with better quality of life, and even longer survival.

And perhaps the data on giving chemotherapy close to a person’s last days on Earth, and the CMS quality metric, are unfair, and insensitive to the realities of how doctors and patients make decisions.

I stared back into the eyes of my young patient and then into those of his father, who was about my age. He looked kindly, with a thick, bushy white mustache, a red tattersall shirt, and work jeans. This man adored his son, accompanying him to every appointment, and always warmly clasped my right hand with both of his in thanks for our medical care — a gesture I felt unworthy to receive, given my inability to eradicate his son’s leukemia.

If our roles were reversed, how would I react if my son’s cancer doctor told me that the option for more chemotherapy was off the table, as CMS recommends, given the less than 10 percent chance that it would work, and the much higher likelihood that it could harm?

Wouldn’t I demand that the doctor pursue any and all means necessary to save my son’s life? Patients often do, and studies have shown that patients with cancer that has returned are quite willing to receive toxic cancer treatments that promise minimal potential benefit.

We discussed giving another round of chemotherapy, though I told my patient and his family that I was reluctant to administer it given the vanishingly slim chance that it would help. We also talked about my patient enrolling in a clinical trial of an experimental drug. And finally, we talked about palliative care and hospice, my preferred path forward.

“You’ve given us a lot to think about,” my patient told me as he and his family got up to leave, even smiling a bit at the understatement. His father came over to me and clasped my hand warmly, as usual.

But a couple of days later, despite how well he looked in clinic, my patient developed an infection that landed him in the intensive care unit. If I had given him chemotherapy, we would have blamed the treatment for the hospitalization.

But the cause actually lay with his underlying cancer, which had compromised his immune system, making him more vulnerable to infections. This time, my patient became sick enough that he decided enough was enough, and he accepted palliative care.

For many of my patients at the end of life who doggedly pursue that “one more round” of chemotherapy, a hospitalization becomes the sentinel event convincing them that the side effects of treatment just aren’t worth it anymore. It’s then no wonder people die so soon after their final treatment and time in the hospital.

It isn’t justifiable to give people with cancer chemotherapy when it is futile, just to be able to say “we tried something.” That’s what the CMS quality metric is trying to prevent. But in doing so, it shouldn’t interfere with a patient’s opportunity to come to that decision themselves.

Complete Article ↪HERE↩!

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What does a death doula do?

— Alua Arthur on her ancient profession

Alua Arthur

Death anxiety and end-of-life planning are all in a day’s work for a care worker who helps shepherd clients off this mortal coil

By

There is little about Alua Arthur that emanates the deathly or morbid. The 45-year-old Los Angeles resident has a radiant, gap-toothed smile, a propensity for citrus-colored nail polish and an inclination to laugh before she finishes a sentence.

But not long ago, she was a Legal Aid worker struggling with depression, frequently taking breaks to travel around the world, attend music festivals, visit friends and enjoy short-lived romances with fellow searchers. While backpacking in Cuba, she boarded a bus and sat next to a woman around her age who revealed that she had been diagnosed with uterine cancer. What followed was an hours-long conversation that sent her world off its axis.

“It was strangely intimate and comfortable and hilarious,” Arthur said. “There was such an ease in our new friendship that allowed us to travel to the depths together, and discuss our fears and hopes.” Not long after she came home, her brother-in-law was dying of cancer, and she threw herself into caring for him, her sister and her then four-year-old niece.

Within a few months, she followed her gut and enrolled in a training program to become a death doula, an end-of-life care worker who helps people tie up their affairs and feel more at ease as they face the inevitable. The job can involve providing company, talking through clients’ feelings about estranged friends and family members, and helping them look back on their lives and identify the moments of which they are proud and also their regrets. It’s a calling that Arthur, who grew up in Colorado as the daughter of political refugees from Ghana, details in her rousing memoir, Briefly Perfectly Human.

A celebratory spirit pervades the book. The flip side of thinking about death all day, after all, is remembering how fleeting life is and relishing the mere act of living, as well as the people and natural beauty that surrounds us. Arthur, whose company, Going With Grace, has trained over 2,500 death professionals in 17 countries, spoke with the Guardian about her end-of-life work.

The death doula seems to be gaining popularity, on the heels of the birth doula. Do you sense that we will be hearing about death doulas more and more?

The death doula is very ancient, because as long as humans have been alive, they’ve been dying, and others have been supporting them into their dying. But the profession and the formality of it have been rising in the modern world. It’s similar to birth doulas in the concept and in the work that we do – we care for and celebrate one another. But there’s now a Fortune 500 company that has a death doula benefit as part of their benefits program, where employees get reimbursed to seek the services of a doula for somebody that they consider family. They can help be supportive for somebody’s dying and get reimbursed. Isn’t that pretty rad?

You talk a lot in your book about the difference between empathy and compassion. Can you walk me through that?

I’ve been really empathic all my life. I feel things very deeply. And I feel that I’m feeling things on behalf of other people, but also what I’m feeling for them are things that I’ve made up in my head about what the experience is like. And when I’m doing that when somebody is dying, it’s really dangerous because I don’t know what it’s like to be dying. I can imagine it all I want, but I don’t know what it’s like, and that can be really problematic. This may be a little rude, but I feel like empathic people, sometimes we’re pretty self-aggrandizing in some way. What we have to do when we’re working with people that are dying is practice lucid compassion, which says: I don’t know what it is that you’re experiencing, but I’m down. I’m here with you, and I’ll ride with you.

Book cover of Briefly Perfectly Human, by Alua Arthur.

What does a typical week in your work life look like?

I’m not seeing clients currently – I’m way too busy. These days I’m focusing on spreading public awareness about how we die, hoping to help more people get support when they’re dying, and honestly help more death doulas get clients. But when I was seeing clients, I would have probably just one client whose death looks like it’s coming soon, and then multiple end-of-life-planning clients. And I’d also be doing death meditations, and hosting workshops and helping healthy people plan for the end of life, and helping somebody who has a serious illness.

So not all of your clients count as end-of-life patients?

Many clients are people that carry a lot of death anxiety. There was one client who I met with maybe for two years. His mom had died and his death anxiety was through the roof after she died. And so once a week for almost two years, he would sit and talk about where death anxiety popped up in his life that week, and we’d work through it. I’d offer tips and tricks and we’d do exercises. There was one young woman, she was 22 years old and her parents were in their 50s. But she just thought that it’d be wise to do end-of-life planning and I thought, oh, cool. Let’s do it.

There is a trend in our culture to fetishize the “birth story” but people back off from discussing death, let alone the “death story”.

We want to pretend that it’s not happening. And yet it’s happening every day, all around us. Not only in nature, but there’s probably somebody a few doors down from your home who knows somebody who’s in the process of dying. And we don’t have any skills to talk about our experience. We don’t make space for grief.

But I feel like it’s starting to shift. For example, this television series, Limitless, with Chris Hemsworth. In one of the episodes he explores the limits of his physical body. Even though the previous episodes were all about how he could live longer and better, a whole one is thinking about death.

Our world is lousy with biohackers trying to stave off death.

We can’t escape it. That’s kind of the point. People work so hard to create all these workarounds and try to deny it in some capacity. But by denying it, they’re making it more real. Like, why not just spend the time talking about your fears of death?

In your book you don’t hold back about your battle with depression. How does that inform your work?

Well, for starters, my life prior to death care was just kind of a hot mess. There was no direction, no purpose, but there was plenty of adventure. I was the lawyer working at Legal Aid and who was broke, saddled in debt. Prior to death care, I was always seeking something – you know, something that made me feel alive. I sought out big adventures, traveled to faraway places, ate different foods. I used to go to Burning Man but I haven’t been recently. I think that part of me has always been seeking peak experiences in life. That part of me lends itself really, really easily to death care because a big part of my relationship to death is grounding myself in this body of this life for now, and filling it up as much as I can.

What’s the number one question people ask you when they’re dying?

They always ask what the meaning of it all is. And I don’t know! I know that maybe the locs and the dark skin and the jewelry make people think that I’m talking to other beings all the time, that I’m mystical. But I don’t know anything.

Two of my friends recently lost their parents and I’ve been struggling with writing letters to them. Do you have any advice?

Sometimes the right thing to do is just to show up and say, like, “This is really, really hard but I don’t know what to say, but just know that I care about you. Just know that I know this happened. I don’t know what you’re experiencing. And this is uncomfortable, but I want you to know that I’m here and I care about you.” And then you’ll probably get a thank-you, and if they want to talk about the person they lost, they will, and if they want to talk about the Kardashians, they will.

How does your current work influence the way you live now?

I think I give myself a lot more grace for the mistakes I make and my sadness and my fear and my doubt, and the extra pounds that I’m carrying. I give myself a lot more freedom to enjoy food. Whereas before, I was so concerned with being skinny and exercising, and now I’m like, fuck it, like I’m so grateful for this body that carries me around Earth. Plus, I love chocolate cake.

Complete Article ↪HERE↩!

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Many Patients Don’t Survive End-Stage Poverty

By Lindsay Ryan

He has an easy smile, blue eyes and a life-threatening bone infection in one arm. Grateful for treatment, he jokes with the medical intern each morning. A friend, a fellow doctor, is supervising the man’s care. We both work as internists at a public hospital in the medical safety net, a loose term for institutions that disproportionately serve patients on Medicaid or without insurance. You could describe the safety net in another way, too, as a place that holds up a mirror to our nation.

What is reflected can be difficult to face. It’s this: After learning that antibiotics aren’t eradicating his infection and amputation is the only chance for cure, the man withdraws, says barely a word to the intern. When she asks what he’s thinking, his reply is so tentative that she has to prompt him to repeat himself. Now with a clear voice, he tells her that if his arm must be amputated, he doesn’t want to live. She doesn’t understand what it’s like to survive on the streets, he continues. With a disability, he’ll be a target — robbed, assaulted. He’d rather die, unless, he says later, someone can find him a permanent apartment. In that case, he’ll proceed with the amputation.

The psychiatrists evaluate him. He’s not suicidal. His reasoning is logical. The social workers search for rooms, but in San Francisco far more people need long-term rehousing than the available units can accommodate. That the medical care the patient is receiving exceeds the cost of a year’s rent makes no practical difference. Eventually, the palliative care doctors see him. He transitions to hospice and dies.

A death certificate would say he died of sepsis from a bone infection, but my friend and I have a term for the illness that killed him: end-stage poverty. We needed to coin a phrase because so many of our patients die of the same thing.

Safety-net hospitals and clinics care for a population heavily skewed toward the poor, recent immigrants and people of color. The budgets of these places are forever tight. And anyone who works in them could tell you that illness in our patients isn’t just a biological phenomenon. It’s the manifestation of social inequality in people’s bodies.

Neglecting this fact can make otherwise meticulous care fail. That’s why, on one busy night, a medical student on my team is scouring websites and LinkedIn. She’s not shirking her duties. In fact, she’s one of the best students I’ve ever taught.

This week she’s caring for a retired low-wage worker with strokes and likely early dementia who was found sleeping in the street. He abandoned his rent-controlled apartment when electrolyte and kidney problems triggered a period of severe confusion that has since been resolved. Now, with little savings, he has nowhere to go. A respite center can receive patients like him when it has vacancies. The alternative is a shelter bed. He’s nearly 90 years old.

Medical textbooks usually don’t discuss fixing your patient’s housing. They seldom include making sure your patient has enough food and some way to get to a clinic. But textbooks miss what my med students don’t: that people die for lack of these basics.

People struggle to keep wounds clean. Their medications get stolen. They sicken from poor diet, undervaccination and repeated psychological trauma. Forced to focus on short-term survival and often lacking cellphones, they miss appointments for everything from Pap smears to chemotherapy. They fall ill in myriad ways — and fall through the cracks in just as many.

Early in his hospitalization, our retired patient mentions a daughter, from whom he’s been estranged for years. He doesn’t know any contact details, just her name. It’s a long shot, but we wonder if she can take him in.

The med student has one mission: find her.

I love reading about medical advances. I’m blown away that with a brain implant, a person who’s paralyzed can move a robotic arm and that surgeons recently transplanted a genetically modified pig kidney into a man on dialysis. This is the best of American innovation and cause for celebration. But breakthroughs like these won’t fix the fact that despite spending the highest percentage of its G.D.P. on health care among O.E.C.D. nations, the United States has a life expectancy years lower than comparable nations—the U.K. and Canada— and a rate of preventable death far higher.

The solution to that problem is messy, incremental, protean and inglorious. It requires massive investment in housing, addiction treatment, free and low-barrier health care and social services. It calls for just as much innovation in the social realm as in the biomedical, for acknowledgment that inequities — based on race, class, primary language and other categories — mediate how disease becomes embodied. If health care is interpreted in the truest sense of caring for people’s health, it must be a practice that extends well beyond the boundaries of hospitals and clinics.

Meanwhile, on the ground, we make do. Though the social workers are excellent and try valiantly, there are too few of them, both in my hospital and throughout a country that devalues and underfunds their profession. And so the medical student spends hours helping the family of a newly arrived Filipino immigrant navigate the health insurance system. Without her efforts, he wouldn’t get treatment for acute hepatitis C. Another patient, who is in her 20s, can’t afford rent after losing her job because of repeated hospitalizations for pancreatitis — but she can’t get the pancreatic operation she needs without a home in which to recuperate. I phone an eviction defense lawyer friend; the young woman eventually gets surgery.

Sorting out housing and insurance isn’t the best use of my skill set or that of the medical students and residents, but our efforts can be rewarding. The internet turned up the work email of the daughter of the retired man. Her house was a little cramped with his grandchildren, she said, but she would make room. The medical student came in beaming.

In these cases we succeeded; in many others we don’t. Safety-net hospitals can feel like the rapids foreshadowing a waterfall, the final common destination to which people facing inequities are swept by forces beyond their control. We try our hardest to fish them out, but sometimes we can’t do much more than toss them a life jacket or maybe a barrel and hope for the best.

I used to teach residents about the principles of internal medicine — sodium disturbances, delirium management, antibiotics. I still do, but these days I also teach about other topics — tapping community resources, thinking creatively about barriers and troubleshooting how our patients can continue to get better after leaving the supports of the hospital.

When we debrief, residents tell me how much they struggle with the moral dissonance of working in a system in which the best medicine they can provide often falls short. They’re right about how much it hurts, so I don’t know exactly what to say to them. Perhaps I never will.

Complete Article ↪HERE↩!

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As doctors, we are failing to put patients’ needs first, causing harm at the end of life

— Doctors including Zachary Tait and Rupal Shah, and recently bereaved readers Jo Fisher and Rebecca Howling, respond to Adrian Chiles’s column on how his father spent two of the last days of his life alone and distressed in A&E, for no good reason

‘As a junior doctor working in A&E, I loathed watching frail, mostly older people languish on trolleys in corridors.’

My condolences to Adrian Chiles on the death of his father. His column describing the futility of his father’s last “precautionary” trip to A&E (3 April) highlights a rising challenge of the ageing population. As health and social care services collapse, the harms and indignities of hospital admission increase, especially for those least able to advocate for themselves. As a junior doctor working in A&E, I loathed watching frail, mostly older people languish on trolleys in corridors, receiving substandard treatment that they didn’t want and were unlikely to benefit from. This is now the norm in every hospital I’ve been to.

A 2014 study showed that more than a quarter of hospital inpatients die within a year. The risk, perhaps unsurprisingly, increases with age. It is our responsibility as clinicians to have difficult and frank conversations with patients ahead of time; to be pragmatic, realistic and kind in our decision-making. Unfortunately, lots of this comes under “planning for the future”, which tends to slip down the to-do list during a crisis. It is the single most rewarding part of my work to have the time and opportunity to make care plans with patients, to know what matters most to them, and to stop the “shrugs” that Chiles faced at every turn. But medicine-by-protocol is quicker and cheaper than thought and pragmatism, so as resources are stretched ever further, it may continue to flourish. I am so sad for Peter Chiles’s distress, and so grateful that his son uses his voice to call attention to it.
Zachary Tait
Manchester

I have been a GP partner in Battersea, London, for 20 years. Unfortunately, Adrian Chiles’s opinion piece absolutely resonates. As clinicians, we are now taught to prioritise “safety” over all other considerations – despite the dangers inherent in doing so. Really, we are often protecting ourselves more than we are protecting our patients – an inadvertent side-effect of our unforgiving regulatory system.

We doctors are behaving as “artificial persons” who represent the healthcare system, and not as moral agents who have a duty to create meaning with our patients. We urgently need to move into a moral era of medicine – one that rejects both the protectionism of the past and the reductionism of the current context, which so often results in the cruelties and inefficiencies that Chiles describes.
Rupal Shah
Co-author, Fighting for the Soul of General Practice – The Algorithm Will See You Now

Adrian Chiles’s article stirred my thinking, as I have been on a similar journey. My husband died two weeks ago, having been advised that he had three months to live. This proved to be the case. With the Hospice at Home service, the NHS was truly wonderful. He died, however, with morphine slowly killing him. This could have been prevented if an assisted dying law was in place. One of the nurses said that what we were doing was cruel.

We were able to resist a possible hospital admission for chest pains by having what is called a ReSPECT document signed by our GP for “do not resuscitate”, and because we had an advance directive, dated 2022, that had been placed with the GP and was on his medical records. This made the whole process so much easier for us, but also for the various wonderful medics. Parliament needs to update our laws to align with so many in this country who wish for greater clarity and support Dignity in Dying.
Jo Fisher
Brampton, Cambridgeshire

In response to Adrian Chiles’s article, and having recently lost my own father, the best advice I can offer anyone is to make sure you have power of attorney in place for your parents. That is the way you can ensure that you have the power to override the decisions of medical staff who, while acting with the best intentions, will not know your parents as well as you do and may not make the decision that is best for them, or what they would have wanted. Having a power of attorney in place is more important than a will, in my view, because it enables you to help your living parent and ensure that their wishes are complied with. In my father’s final days, I was asked numerous times: “Do you have power of attorney?” I was very relieved to be able to answer: “Yes.”
Rebecca Howling
Toft, Cambridgeshire

As the daughter of an elderly parent, I very much understand the need for A&E avoidance, to cause least distress. No doubt waiting haplessly alone for many hours hastens demise. However, as a GP, I know that the huge increase in litigation over the last 20 years is a very real threat to doctors’ livelihoods. Even a simple complaint from a patient or their family can cause weeks, months, sometimes years, of stress to a health professional. Ruminating over every decision, every action or inaction, every justification, is enough to give us a heart attack – or worse, to make us follow in the footsteps of Paul Sinha and Adam Kay and quit the profession for a more peaceful existence.
Name and address supplied

Dear Adrian, I am so sorry that this happened to your dad. Sadly, it is a story repeated again and again. I am what is termed a “late career” doctor (over 55), and I recently transitioned from working as an emergency consultant to become a GP working in aged care. Over my 30-year career, mainly in emergency and other hospital specialities, although including a significant period in palliative care, I slowly came to appreciate that the way we have set up our emergency system doesn’t serve older people at all, and the frailest elderly are generally so poorly served that transferring them almost inevitably makes things worse.

My residents (200 across five aged care facilities) all have discussion and documentation of whether they should go to hospital and under what circumstances. The staff know to call me if there is any uncertainty, day or night. I do lots of family meetings so relatives can feel confident that the right decisions will be made. I love looking after old people and ensuring they get the best care that is right for their individual circumstances.

I firmly believe that aged care in particular is a GP subspecialty of its own. Too often care is fitted into lunch breaks and “on the way home” visits, and devolved to phone services out of hours. This is no way to treat our oldest and frailest, who deserve so much better. Again, I am so sorry.
Fiona Wallace
Sheffield, Tasmania, Australia

I read Adrian Chiles’s article about his father’s experience with empathy. My own father led a district health authority, with many hospitals under his care. He was intensely proud of the NHS, but in his 90s he was very clear that he didn’t wish to die in hospital or even to be admitted again unless absolutely essential. If he had an infection, he would be treated at home. Should it worsen and Dad die, it would be in his own bed. As a family, we listened. I was caring for him and know it took a huge weight off Dad’s mind to know that he need not dread the ambulance or the bewilderment of a strange place. Too many elderly people die in the back of ambulances and in A&E. Let those who are able to do so make informed choices about their end of life. It is a great comfort to them.
Dr Jane Lovell
Ashford, Kent

Adrian Chiles is correct that decisions about sending frail and elderly patients to hospital can be due to doctors being risk-averse. Doctors face a double jeopardy from the General Medical Council, who can take their livelihood, and the legal system if things go wrong.

Not all families can accept when beloved elderly relatives have reached the end of their life. Some people have unrealistic expectations about what healthcare can achieve in frail patients, and push for investigations and treatments even when it seems unlikely to affect the final outcome. If these are not performed, doctors can be accused of negligence or ageism. Most doctors would like less invasive healthcare at the end of life for themselves and their own families than they routinely offer to patients.

I would encourage everyone to write an advance directive or “living will” outlining how they would like to be treated in the event of their health deteriorating. I would also suggest giving a trusted person power of attorney for healthcare. These can be very helpful in reducing incidents like the one described in the article.
Dr Stephen Docherty
Consultant radiologist, Dundee

I would like to express my condolences to Adrian Chiles on the death of his father. I can empathise with him on many levels. I too lost my father recently in not dissimilar circumstances. I am a practising GP, a former medical director of an out-of-hours GP service, and now spend most of time as a management consultant trying to influence change in the NHS to stop incidents like this happening.

When I talk to clinicians and managers, I am always humbled by their devotion despite the pressures they work under. In my current assignment, over 32% of clinicians feel they are burnt out, and many more express intense frustration with the low-value clinical work they undertake. There is a limit to how much the system and the individuals who prop it up can give. The demand for care is rising every year.

I suspect that the GP who decided to send Adrian’s father to A&E without seeing him was under pressure to make a number of decisions that night. Given more choice, I’m sure they would have prioritised cases such as Adrian’s father over lower-priority, often unnecessary cases. What we do not discuss as a society with as much fervour as the system and those who provide care is how we consume care, so we can create time and space to support those who really need necessary attention.
Dr Riaz Jetha
London

Complete Article ↪HERE↩!

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We’re all going to die someday.

— Toronto ‘death cafés’ offers a new way to get comfortable with that fact

Death-care practices vary according to culture and religion and many death doulas argue that in western cultures there’s still a lingering taboo around frank talk about death, something that makes it harder for many to deal with death, dying and grieving.

“We’ve heard the saying that it takes a village to raise a child. That village is equally important at the end of our life as it is in the beginning.”

BY Christine Sismondo

After more than a decade living side by side on a quiet street in Toronto’s east end, Fiona* and her partner Lorraine* had become close friends with their neighbour Tony.

“Lorraine and Tony talked all the time,” said Fiona. “When he started getting older and lived on his own, she helped him with errands and grocery runs. I mowed his lawn.”

When Tony was diagnosed with inoperable cancer in 2018, Fiona started cooking for him and filling in when support workers and nurses weren’t on duty.

When it came to preparing to die, though, the couple decided Tony needed more help than they could offer.

They enlisted the help of a death doula: someone who is trained to help with emotional and physical support as well as education about the end-of-life process.

In the last couple of days of Tony’s life, Fiona slept on the couch next to his bed. The doula and Lorraine sat with him until he died.

What struck Fiona as most remarkable, she said, was the “ceremony of it all.” Lorraine and the doula washed Tony’s body and sat with him for hours after he passed.

“I think, in a lot of western cultures, people don’t want to hang out with a person’s body after they’ve gone,” she said. “This felt like helping him to move on and there was a level of comfort in it that helped all of us.”

Death-care practices vary according to culture and religion, and many doulas argue that in western cultures there’s a lingering taboo around frank talk about death, something that makes it harder for many to deal with death, dying and grieving.

That started to change 20 years ago with the first “death café,” an initiative launched by a recently widowed Swiss sociologist named Bernard Crettaz. The concept — usually a scheduled group discussion about death among people from all walks of life (not to be mistaken for grief counselling) — has since spread and evolved.

“Now there are ‘death salons,’ ‘death dialogues’ and ‘death book clubs,’” said Kayla Moryoussef, who works with Toronto’s Home Hospice Association and has her own practice, the Good Death Doula. “There’s even a ‘death over drafts’ thing where people meet in bars to drink and talk about dying and death.”

Probably the biggest change to the death café model in Toronto has been that, pre-pandemic, the Home Hospice Association’s death cafés were held in bricks and mortar spaces. When the pandemic forced the cafés online and they no longer had to worry about venues and attendance, it allowed the association to offer more niche programming, such as cafés for parents, pet lovers caregivers and “spoonies” (people experiencing chronic pain).

“I came up with the idea for a spoonies death café because, as a person with chronic illness and disability, I know my relationship with dying and death is fundamentally different than my peers, — especially peers my age,” said Moryoussef, who is now in her late 30s.

The mission at the Home Hospice Association is to offer distinct programming for different communities in the name of accessibility and equitability.

“The reason we even got into this death doula training, development and mobilization was because we could see that our health-care system was not going to be able to keep up,” said Tracey Robertson, a doula and co-founder of Toronto’s Home Hospice Association.

Even if our health-care system could bounce back from its current state, most medical training is about finding cures, and many doctors receive little or no training when it comes to talking about death.

“We’ve all heard the saying that it takes a village to raise a child — we always say that village is equally important at the end of our life as it is in the beginning — some may even say more important,” said Robertson.

Death cafés are part of the foundation for that vision, she explained, because you can only build that village after death is normalized and communities are more comfortable talking about it.

“All it requires is for all of us to just get a little bit more comfortable with the fact that we all are going to be there one day,” said Robertson. “How can we help our neighbour who is faced with the reality of sitting in a doctor’s office and hearing words none of us ever want to hear?”

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Palliative and hospice care in hospitals and clinics

— The good, the bad, and the ugly

By Earl Stewart, Jr., MD & Miguel Villagra, MD

I walk into the patient’s hospital room during evening rounds. He looks pale and tired, having recently completed a round of chemotherapy for his stage IV pancreatic cancer. His wife is at the bedside, scared and concerned about her husband’s rapid decline. I sit down to discuss goals of care when the patient immediately says, “I can’t do this anymore.” His wife responds immediately to the patient: “Of course you can.” As I delve deeper into the patient’s constant pain and discomfort, the conversation naturally shifts toward a comfort care-focused approach. After 55 minutes at the bedside, both patient and wife agree to further discuss this with the palliative care team. Ultimately, the medical team decided to transition the patient to hospice care.

Similar examples exist in outpatient practice. Take, for example, the 56-year-old female patient with metastatic non-small cell lung cancer who would clearly benefit from early institution of palliative care given the known mortality benefit. When you see her time and again, she engages in candid discussions with you as her physician that she would rather let “nature take its course.” She doesn’t want chemotherapy. She refused radiation. She continues to smoke. She doesn’t want her family to know, and palliative care options, though previously discussed with her, remain out of the question for her.

These are realistic examples from daily practice that present an interesting quagmire to the practicing physician as he or she treads the lines of patient autonomy and applies the evidence of what has been shown to clearly help a patient feel and live better, especially those with terminal illnesses. Tools exist to aid with these difficult conversations, and awareness among the patient, health care professionals, and family members makes all the difference in having these critical discussions. It’s often rather difficult to accept when you are taught to do something but come to the realization that sometimes doing nothing is what a patient prefers. In that moment, you realize that doing nothing means doing everything.

Sometimes practicing hospital medicine is a battle between life and death. Outpatient practice, too, is rife with such battles between the material and immaterial. Palliative and hospice care, though different, offer hope and comfort in some cases. Together, these medical disciplines not only alleviate physical suffering but also, through a conjoined care model, address the emotional and spiritual needs of patients and their families, guiding them through one of life’s most difficult journeys.

Palliative care is a specialized approach that aims to alleviate physical symptoms, manage pain effectively, and reduce the emotional and psychological distress experienced by individuals facing incurable illnesses, irrespective of their specific diagnosis. Palliative care is designed to improve the quality of life for both patients and their families. At the center of this is holistic care. A patient qualifies for hospice services if he or she has an illness that limits his or her life expectancy to six months or less.

Transitioning a patient from palliative care to hospice care is a crucial step that signifies a shift toward comfort-focused end-of-life treatment. Clear communication, compassionate support, and honoring patient and family preferences play critical roles in improving quality of life, increasing satisfaction with care, and enhancing emotional well-being during this transition. This process ultimately hinges on doing what is in the patient’s best interest and ensuring a death with dignity.

Physicians navigating palliative and hospice care face a unique set of emotional and professional challenges, such as handling end-of-life conversations with families to determine a patient’s goals of care, managing pain and symptom control effectively, and addressing spiritual distress in patients. However, within these challenges, there is a profound reward in making a significant difference in the final stages of a patient’s life. It has been previously heralded that caring for the dying patient is indeed a rewarding challenge given the intricacies it presents and doing so is crucially important is physician education. We now know that not only does education matter for physicians in these veins of practice, but it matters for nurses as well.

In palliative and hospice care, an interdisciplinary approach involves physicians overseeing medical decisions, nurses providing direct patient care and symptom management, social workers addressing psychosocial needs, chaplains offering spiritual support, and pharmacists ensuring proper medication management. Each team member contributes his or her expertise to create a comprehensive care plan that supports the physical, spiritual, and psychosocial well-being of the patient, highlighting the power of collaboration in providing holistic, patient-centered care.

Physicians navigating the complexities of palliative and hospice care must adopt practical strategies for effective patient management and compassionate support. Key strategies include fostering open communication with patients and their families, setting realistic expectations, and managing one’s own emotional well-being. Active listening, providing clear and empathic explanations, and involving the entire care team in medical decision-making are crucial for effective patient care.

Though we understand more as a physician community about employing palliative and hospice services for our patients when apropos to providing evidenced-based care, we are aware there is still work to be done to better the delivery of this care.

It has been documented that work is needed to further guide the integration of the family meeting specifically into oncology practice.

Recent data have shown how the institution of information technology and so-called “e-health” methods can be very helpful in individualizing care and extending palliative care services to patients.

We will all have these conversations. We will see patients like these. We charge all physicians to embrace the tenets of palliative care and hospice when appropriate for their patients and to learn more about the services offered in their hospitals, health systems, and practice structures to provide for the most optimal health outcomes.

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I understand why people are wary about assisted dying

— But it gave my mother a dignified end

Protesters gather in London to call for a change in the law to support assisted dying.

The Dutch legalisation spared her further misery. We don’t take euthanasia lightly; we’re just grateful to have the option

By

My mother, Jannèt, was 90 years old when she ended her life by means of euthanasia. For years she had been suffering from numerous serious and painful conditions that made her life miserable. She always worried about her health and was terrified of what the future undeniably held in store for her: more pain, more dependence on others, more suffering, more desperation.

On 20 June 2022 at 2pm she was visited by a doctor and a nurse. They had a last conversation with her, during which the doctor asked her if euthanasia was still what she wanted. My mother said yes. She had already decided that she would take the drink herself instead of being injected. She didn’t want to mentally burden the doctor more than necessary.

I was impressed by my mother’s courage in the face of death. She was completely calm, almost cheerful. Before the procedure started, she spoke briefly to us, her three daughters. She told us how it was important to take care of the Earth wisely, to recycle as much as possible and to look after one another. She then drank the small cup in one gulp. She fell asleep very quickly and 15 minutes later the doctor told us her heart had stopped beating. A long and tormented life had come to an end.

The country in which I live, the Netherlands, was the first in the world to legalise euthanasia in specific cases. That was in 2001. Assisted dying has become generally accepted in our country. We talk about it openly and we consider the possibility when situations call for it. We are grateful that this option exists, because it prevents so much pointless suffering. But we never talk about it lightly. Assisted dying has always remained something huge, something you don’t resort to lightheartedly.

Renate van der Zee’s mother Jannèt
‘I was impressed by my mother’s courage in the face of death.’ Renate van der Zee’s mother Jannèt

As a matter of fact, you can’t. In the Netherlands it will always remain a criminal offence to end a life. Exceptions are made only when a whole range of requirements are met. First of all, the patient must ask for it themselves and must therefore be mentally capable of asking for it. In addition, there are all kinds of due care requirements. For example, the doctor must be convinced that the request for assisted dying is voluntary and that the patient has carefully thought it through. The doctor must also be convinced that the patient’s suffering is hopeless and unbearable. That they can no longer heal, that it is not possible to alleviate their suffering and that there is no reasonable other solution. At least one other independent doctor must be consulted. That independent doctor will discuss the situation with the patient and form his or her own opinion about the situation.

Assisted dying is allowed only if a person is suffering owing to a medical cause, not if someone is simply tired of life or feels that their life is complete. My mother didn’t feel that her life was complete. There were still things that made her happy. She loved flowers and plants; she loved politics; she followed the news. But because of her deafness, incontinence and many other conditions she became socially isolated. Visits from friends became too much for her, and at a certain point even phone calls became impossible.

Walking became very difficult, and she grew afraid to go outside. She always loved to wander through a neighbourhood park, especially in springtime, when the bluebells and lilies of the valley bloomed abundantly. But she was no longer able to go there, not even in a wheelchair. She always enjoyed reading and watching nature programmes, but those things too became increasingly difficult. Her numerous ailments and her lack of mental resilience to deal with them made a normal daily existence impossible. And there was no prospect of improvement.

My mother’s euthanasia was a long process. Five years before her death, she told her GP that assisted dying was what she wanted if her life became unbearable. Over the years, my older sister discussed this wish with her during long conversations. She also took charge of all the conversations that were necessary before permission was finally given.

My mother wanted to celebrate her 90th birthday before she took leave of life. Her last birthday fell on Easter, which she regarded as meaningful. But what kind of birthday gift can you give to someone who will soon be gone? My older sister came up with the idea of making a book in which all her loved ones wrote down what she meant to them, or reminisced. She was very happy with that.

We sat close to her when she died. My younger sister took my mother’s hand and she held it tightly. The older sibling said in a soft voice, “You can close your eyes now, Mum.” That’s what my mother did. I sat there and tried not to cry. It’s not easy to witness your mother drinking a deadly potion and dying after 15 minutes.

The next day was the first day of summer. The sun was shining, the weather was beautiful. I woke up with the pain that my mother was gone. But also with a feeling of relief and deep gratitude that, after such an incredibly difficult life, she had been granted a painless and dignified death. I knew we had given her a great gift.

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