Is extending life by weeks worth the toll some cancer drugs take?

— Doctors push for ‘common-sense oncology’

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

By Amina Zafar, Christine Birak

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.

A man stands with a woman holding an umbrella while on vacation in B.C.
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.

A woman with long hair, seated wearing a black top and black glasses.
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.

“People are saying is this really meaningful?”

Gyawali aims to normalize asking such questions.

Quality of life and quantity

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.

A man stands wearing glasses, a striped shirt, suit jacket and conference lanyard in front of a blue backdrop reading American Society of Clinical Oncology.
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.

A patient receives chemotherapy treatment for breast cancer in France.
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.”

Demand for death doulas has soared.

— Here’s how they help patients go with grace.

By Stacey Colino

What does it mean to have the “best possible death?” A growing number of end-of-life doulas are helping patients and families figure that out.

When Jerry Creehan was diagnosed with Amyotrophic Lateral Sclerosis (ALS) in January 2017 at age 64, he and his wife Sue knew they were facing a rough road ahead. For more than a year, Jerry had struggled with his balance and had been falling, unable to get up. ALS (formerly known as Lou Gehrig’s disease) is a progressive neurological disorder affecting nerve cells in the brain and spinal cord that regulate voluntary muscle movement, breathing, and other bodily functions; it eventually leads to paralysis and death.

In 2020, his condition began declining and he became reliant on eye gaze technology to move his wheelchair, and on a non-invasive ventilator to breathe. While attending a support group at the ALS Clinic at Virginia Commonwealth University, Sue heard Shelby Kirillin, an end-of-life doula, speak. Kirillin, a former nurse specializing in neurotrauma, spent two decades working in intensive care units, where she saw “how ill-prepared people are for the end of life. People don’t know how to talk to people with a terminal diagnosis. I thought we could do better.” That’s what inspired her to become an end-of-life doula in 2015.

“We knew we were in the final stages of ALS, and even though Jerry wasn’t afraid of dying, we needed someone to help us talk about it,” recalls Sue, a wound-care nurse consultant in Richmond, Virginia. “He wanted it to be the best possible death it could be, pain-free, and not filled with anguish.”

Many people are familiar with labor doulas, postpartum doulas, and maybe even abortion doulas, who provide support for people dealing with challenges related to ending a pregnancy. By contrast, end-of-life doulas work with those on the verge of dying, and their families. Also called death doulas, these professionals used to be rare but that changed during the COVID-19 pandemic. Since the virus began wreaking havoc, organizations that support and train death doulas in the U.S. have grown. In 2019, the National End-of-Life Doula Alliance (NEDA) had 260 members in the U.S.; membership grew to 1,545 doulas as of January 2024. Research has found that end-of-life doulas are most active in Australia, Canada, the United Kingdom, and the United States.

“During the pandemic, people were facing their own mortality more than at any other time because there was a lot of dying and grief happening,” says Ashley Johnson, president of NEDA, which is based in Orlando.
Offering various forms of support

Generally end-of-life doulas provide non-medical, compassionate support and guidance to dying people and their families. This includes comfort and companionship, as well as social, emotional, spiritual, and practical support (such as household help or running errands), depending on the provider’s strengths and the patient’s needs. Some end-of-life doulas help with estate planning, end-of-life care planning, or legacy planning. Others focus on helping people create an ambiance they want for their last days, facilitate difficult conversations between clients and their loved ones, or help with grief counseling with survivors.

“People don’t want to talk about death—they’re so afraid of it,” says Elizabeth “Like” Lokon, a social gerontologist who recently retired from the Scripps Gerontology Center at Miami University in Ohio and is now training to become a death doula. “As a social gerontologist, I want to bring it out from hiding and help people accept it. In some cultures, the denial of death, the separation between the dying and the living, is not as severe as in some western countries,” adds Lokon, who grew up in Indonesia.

“We labor into life, and we labor out of life,” says Kirillin. “All of us are born with life and death walking next to us.”
Changing the approach to death

Since it was formed in 2015, the International End-of-Life Doula Association (INELDA) has trained more than 5,600 doulas around the world, but the practice and training of death doulas varies considerably. There isn’t a universally agreed upon description of this type of care or federal regulations in the U.S. for becoming an end-of-life doula or oversight of their work. A study in the journal Health & Social Care in the Community concluded that the lack of a business model for death doulas creates inconsistencies in the services death doulas offer and what patients and their families can expect.

For example, INELDA offers a 40-hour training that focuses on the foundations of doula work and support for the dying. By contrast, NEDA is a membership organization that offers micro-credentials after doulas show their knowledge and proficiency in the skills involved. Other training programs offer four-week in-person courses, 12-week online courses, six-week programs, and other formats.

There’s also no standardized fee structure for end-of-life doulas: It typically ranges from $20 to $100 per hour, depending on the location and range of services that are offered, Johnson says. And some death doulas offer a sliding scale of fees or do it voluntarily, on a pro bono basis. Their services are not covered by insurance.

Regardless of how they’re trained or paid, many death doulas find the practice meaningful and fulfilling.

“People find it profoundly moving—some people use the word honor or sacred,” says Douglas Simpson, a trained end-of-life doula and executive director of INELDA. “End-of-life doulas help people take control of what their death looks like … It’s very fulfilling and not as depressing as people think.”
During the pandemic, Julia Whitty, a writer in Sonoma County, California, who had done volunteer hospice work earlier in her life, trained to become an end-of-life doula because her mother and a friend were on the verge of dying. She wanted to be better prepared personally, and she wanted to help other people with a terminal diagnosis in her social sphere.

“It’s a two-way relationship because you’re learning something from someone who’s coming to their end,” says Whitty, “and hopefully you’re helping them manifest what they want in their last days—physically, emotionally, socially, and spiritually.”

Among the things end-of-life doulas don’t do: administer medicine, monitor vital signs, make or recommend medical decisions for the client, impose their values or judgments on clients, or act as therapists.

“We meet people where they are—we come in holistically and help them navigate the final stages of life,” Johnson says. “It’s helping people face their own mortality with dignity. We’re promoting death positivity, decreasing the stigma.”
Creating a peaceful ending

Eleven months before he passed away, Jerry Creehan was put into hospice care and his wife Sue contacted Kirillin who worked with them once or twice each month for an hour at a time then more often as his condition deteriorated.

At first, Kirillin helped them talk about what death looks like and how Jerry could “own” his death. Sometimes she’d spend time just with Jerry, other times just Sue, and sometimes with both of them. As Jerry got weaker, Kirillin helped him come up with rituals to do with loved ones; she talked to Jerry about what he wanted his legacy to be and helped him write letters to loved ones. With Kirillin’s guidance, they created a detailed plan for his funeral and he designated personal belongings to be given to people he loved on his last night. Kirillin suggested they send an e-mail to friends and family members asking them to share memories and photos of time spent with Jerry.

“We got a wonderful response and put together a legacy journal,” recalls Sue who has three adult children and six grandchildren with Jerry. “I would read it to him, and it was very consoling to him to know that he had an impact on people’s lives.”

On his last evening, May 2, 2022, his breathing had become very difficult. There were 19 people in the bedroom, and someone opened a prized bottle of pinot noir to be used for communion with everyone present. Jerry was a certified wine educator, a foodie, an avid golfer, traveler, and a devout Christian, according to his wife of 46 years.

“He turned to me and said, Sweetie, I think it’s time,” she recalls. They kissed and hugged each other—family members helped put his arms around her—and Jerry said to Sue, “I love you. I always have and I always will. I’ll see you soon.” Then he winked at her and closed his eyes, she recalls. His ventilator was turned off and he passed away.

Afterwards, Kirillin and the hospice nurse stayed with him, bathed him, dressed him, and prepared his body for the funeral home.

“We did everything the way he wanted it to be done—that was a big gift to my family,” says Sue.

The Creehans’ experience isn’t unusual. In a study published last year in Palliative Care and Social Practice, researchers interviewed 10 bereaved family members about their experiences with a death doula and found that it was overwhelmingly positive. The most valuable benefit families gained was an increase in death literacy, including the ability to talk openly about death, which helped them feel empowered to care for their loved ones at the end of life. There was also a positive ripple effect as families spread the word about the benefits of using a death doula.

“People don’t want to wait for death to come and get them—they want to play the hand they were given the best they can,” Kirillin says. “We’re all going to die. I can’t change that. But I can help someone end the last chapter of their life the way they think they should. And I will sit next to them as they own it.”

Complete Article HERE!

A Compassionate Journey

— The Transition from Palliative Care to Hospice

By Mazhar Abbas

The transition from palliative care to hospice is a journey marked not just by the end of life, but by the culmination of a lifetime’s worth of relationships, memories, and the profound need for compassion. In the case of Elaine Arazawa, a 62-year-old woman diagnosed with pancreatic cancer that had metastasized to her liver, the value of community and personalized care in her final days comes into sharp focus. Diagnosed with a condition that led to over a dozen tumors, Elaine’s story underscores not only the medical but also the emotional dimensions of transitioning to hospice care.

Understanding the Transition: From Palliative Care to Hospice

The journey from receiving life-prolonging treatments to focusing solely on quality of life is a critical period for patients with terminal illnesses. This transition necessitates a holistic approach that encompasses open communication and thorough assessment of patient needs. Healthcare professionals play a pivotal role in guiding families through this change, ensuring that care is not only medically appropriate but also aligns with the patient’s and family’s emotional and psychological needs. The story of Elaine Arazawa illustrates the profound impact of a well-coordinated care plan, facilitated by a team of dedicated healthcare providers, death care workers, doulas, nurses, grief counselors, and social workers. Together, they create an environment where patients can find solace and families can navigate the complexities of grief and acceptance.

Key Indicators for Hospice Care

Recognizing the right time to transition to hospice care is crucial for ensuring that patients receive the most appropriate support as they approach the end of their lives. Key indicators include a significant decline in health despite receiving treatment, frequent hospitalizations, and a clear preference from the patient to focus on comfort rather than cure. For Elaine, the decision to enter hospice care came after a candid discussion with her healthcare team and family, highlighting the necessity of open dialogue in making informed choices about end-of-life care. This transition allowed her to spend her final days surrounded by love, reflecting on her life, and engaging in meaningful farewells, emphasizing the importance of timing and communication in hospice care decisions.

Building a Supportive Community

Elaine Arazawa’s experience brings to light the significance of community and emotional support in the hospice care process. Unlike many who faced the end of life alone during the pandemic, Elaine had the fortune of being surrounded by her family and a compassionate care team. This communal approach to end-of-life care not only provided Elaine with comfort and love but also offered her family the emotional support needed to cope with their loss. The involvement of death care workers, doulas, and grief counselors ensured that Elaine’s journey was not only about managing physical symptoms but also about caring for the emotional and spiritual well-being of both the patient and her family.

Complete Article HERE!

‘Pain renewed her resolve’

— How my mum tried to die on her own terms

Marianne Brooker’s mother in 2016.

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.
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
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 muchyou 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.

Portrait head and shoulders photograph of Marianne Brooker.
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.

Complete Article HERE!

Alzheimer’s: Watch for signs it’s time to start hospice care

By DANA TERRITO

When is someone with dementia ready for hospice care?

Considered to be the model of quality and compassionate care for individuals facing a serious or life-limited illness or injury, the concept of hospice care began in England in the 1950s.

A pioneering physician named Dame Cicely Saunders created the first modern hospice there in 1967. Hospice care focuses on caring, not curing, and in most cases, care is provided in the individual’s own home. Hospice care is also provided by self-supporting hospice centers, hospitals and nursing homes and other long-term care settings.

Hospice services are available to individuals of any age, religion, race or illness and is covered under Medicare, Medicaid and most private insurance plans, HMOs, and other managed care organizations.

The characteristics of dementia and Alzheimer’s disease are that they are life-altering and eventually fatal conditions for which curative therapies are not available. When someone reaches the stage of Alzheimer’s disease or other dementias in which everyday activities become too difficult for family caregivers to manage, and the symptoms become dramatically more pronounced, a doctor can refer the patient to a hospice provider for end-of-life care.

Some of the characteristics the affected individual may be exhibiting include the lack of ability to ambulate without assistance, incontinence of bowel and bladder, inability to dress and bathe properly, and speech limited to approximately a half dozen or fewer intelligible and different words. There are also intercurrent illnesses associated with advanced dementia in which hospice services would be a benefit. These include aspiration pneumonia, urinary tract infection, septicemia and impaired nutritional status. Hospice care is also available when co-morbid conditions significantly impair the affected individual’s health. These include congestive heart failure or cardiovascular disease, COPD, diabetes, renal insufficiency or malignancy.

Hospice services provide exceptional benefits for those with Alzheimer’s disease or other dementias. Each affected individual receives an individualized care plan, considering the individual’s condition and specific symptoms to determine what services are needed. Hospice provides durable medical equipment and medical supplies to assist family caregivers in managing the symptoms of their loved ones’ disease.

Additionally, hospice care workers can offer families recommendations for creating routines that help the individual feel more comfortable. A multidisciplinary team, including a medical director, oversees the individual’s care.

To begin hospice care, the family caregiver needs to obtain a physician referral. Hospice care is intended for individuals with a life expectancy of six months or less, so individuals with advanced dementia or Alzheimer’s must meet the criteria to qualify for care and receives a doctor’s referral. It can be difficult to assess when the end-of-life will occur since the disease progresses at different rates for everyone, so families need to begin the conversation with a doctor when the individual enters the later stages of the disease.

Most people use hospice care far too late. For more information about hospice care, reach out to the Hospice Foundation of America at hospicefoundation.org; the National Hospice and Palliative Care Organization at https://www.nhpco.org, or the Alzheimer’s Association at www.alz.org.

Complete Article HERE!

Tips for caring for loved ones at the end of their life

— Palliative-care experts on how to comfort a dying person and prepare yourself for the supportive role

By Caitlin Stall-Paquet

Though it’s a natural part of life, death is a tough topic for many of us — even in a country where palliative care is becoming the norm. According to a recent survey, 54.5 per cent of Canadians are dying at home or in community settings, such as hospices, rather than in hospitals. Given the country’s aging population, that number will increase dramatically in the coming years.

It can be overwhelming to care for a loved one who’s dying, to say the least, so we spoke to three experts — who deal with death every day — to get their advice.

Being honest about what’s ahead

Palliative care co-ordinator Shelley Tysick said it’s important for both the dying person and the caregiver to understand what’s ahead. “Preparing somebody, it alleviates a lot of stress,” said Tysick, a palliative-care co-ordinator at Victoria-based Island Health. “And any new experience, if we don’t really know what to expect, it’s hard to know what’s normal.”

Naturally, it can be hard to broach discussions about intimate caregiving, but it can help to do it at the right time. Tysick said creating a care plan early, when there may be less stress or overwhelm, is wise. “Part of that dying process does mean depending more … on others to care for you,” she said. “That includes your personal care, your toileting, your mouth care, your eating, all of that is part of that process. And so having a plan in place and how that could be supported early on, I think is really helpful.”

Anne-Sophie Schlader, executive director of Nova Home Care in Montreal, knows just how challenging this time can be and, on top of that, what it takes to do this type of work. She emphasized that caregivers need to bring a lot of themselves to this work. “Being respectful and compassionate, not passing judgment, being sensitive and dedicated — I would say those are all very important qualities,” she said. Schlader recommended that anyone thinking of being a caregiver assess their capacity honestly and respect their personal limits to avoid causing themselves undue emotional distress or trauma.

And don’t view it as a failure if you can’t be a caregiver. “If you’re not able to do this work, it’s not because you don’t love the person,” Schlader said. “It’s a question of personal boundaries. You will show your love for them in other ways. It’s important that you don’t define this role as either ‘I love you’ or ‘I don’t love you.'”

Deferring to the medical team — and the patient

As a caregiver, it can be useful to consider yourself an extension of the medical team (while, of course, never performing tasks reserved for professionals). Your proximity to the dying person can be a huge asset — changes you see in the patient could inform their treatment.

For instance, if you notice your loved one isn’t eating as much, it can be a sign of advanced illness or a gastrointestinal issue, the experts said. But caregivers might have a hard time letting the dying person take control of their diet, and try to push them to eat even if they don’t want to. This response is common, according to Tysick and Schlader, since keeping someone nourished can feel key to caring for them. However, rather than force the dying person to eat, the advice is to share this change in appetite with the palliative-care team as soon as possible.

Also, Tysick said it can be hard for people to take a step back and make space for our loved one’s wants. “I think we often sort of want to move in to fix things,” she said. “We … identify what looks to be the problem and/or what we think would be best … with a good intention to help — but not recognizing that that’s what we would want for ourselves, but not necessarily what that person may want for themselves, or what might be most meaningful.”

What someone wants at the end of their life is influenced by their social, spiritual and emotional needs and is an individual experience, Tysick said. “There is no one way [to die],” she said. “There’s no best way — there’s no right way.”

Offering comfort

This doesn’t mean there aren’t plenty of things you can do to care for your loved one and make them more comfortable, while keeping the stakes low. “Dying people need to be touched — gently, because sometimes they’re in pain,” Schlader said. “But even if it’s just placing a hand on them, they feel it, and it’s very comforting.” She said it can also help to play calm music, wash their hair, rub moisturizer on their back, change their pillow for a fresh one, and if appropriate, place a warm compress on any sore spots.

Meeting the needs of the dying person can get expensive, however, if you need to buy equipment, like a hospital bed. Kayla Moryoussef, a death doula based in Toronto, suggested shopping for these items second-hand in stores or online marketplaces, then reselling them or giving them away when you no longer need them.

Also remember that grieving together with your loved one can be healthy and a way to show you care. “The dying person has the right to grieve their own death, and that’s often overlooked,” Moryoussef said.

In fact, the experts we talked to said it’s essential that end-of-life caregivers make space for what their loved ones need to say. “With the dying person, it’s mostly about listening,” Moryoussef said. “It’s not about what I have to say — it’s mostly about what they need to talk about.” Part of her job includes helping her clients think through what’s important for them to do before they die, like writing goodbye letters and figuring out their last wishes.

Taking care of yourself as well

Devoting a considerable amount of time and energy to someone who’s nearing the end of their life is no small feat, and Schlader said caregivers should acknowledge the intense emotions that come with the effort. “Guilt is normal, and most caregivers are going to feel guilty if they take a break,” she said.

But, she added, you have to take care of yourself if you want to be helpful to your loved one. “You’re not failing that person,” she said. “You are recharging your battery.”

Complete Article HERE!

The strain of senior pets

— Caring for patients with life-altering needs can test the human-animal bond

By Steve Dale, CABC

It is sadly too routine that veterinary professionals diagnose a condition that quickly forces a pet family to become caretakers. The stress can be insurmountable on the human family, the pet, other animals living in the home, and the often forgotten veterinary professional.

Our pets are increasingly considered family members, and there may be the heartbreak and devotion to required caretaking. Twenty years ago, who would have thought pet hospice could be a viable option?

The list of life-altering changes for a pet may be long for the human family—everything from learning how to administer fluids to having to carry a large dog up and down stairs. How does an elderly pet owner do either of these things? Scheduling visits to see the general practitioner or a specialist might strain a busy family. The pet’s condition could even mean a child missing band practice or canceling family or business travel plans. Changing life plans can be financially costly, and so can treatment.

All of this and more may put a strain on you, the veterinary professional. Although some incredible human beings are natural caretakers and are able to deal with all this in stride, most clients are not quite so malleable. It is also no fun communicating a difficult prognosis and describing a long series of pharmaceuticals that can be alphabet soup in clients’ heads.

A normally amiable client might transform into a quite testy one. It is human nature to push back; however, this is where your patience, empathy, and professionalism should be applied. And remember, whatever is said is rarely personal.

Attempting to remember which medications to administer and when to give those drugs is tough enough. Also, consider some clients may simultaneously be dealing with health challenges requiring medications of their own or dealing with the illness of another family member.

Now add day-to-day difficulties, like administering pills to that dog or cat. When the well-meaning pet owner goes to a counter where the medications are and the fragile cat manages to make a break for it, it’s heartbreaking (and sometimes physically challenging) to push the pills. Sometimes, medications aren’t given because the pet owners feel guilty or that they aren’t capable of getting that pill into the animal.

Not only are human family members stressed, but so are the pets. The once beloved human family members are doing things that may cause temporary discomfort for the pet. Any chronic pain issues are likely being addressed, but findings from many studies demonstrate that pain can cause changes in mood, potentially even aggression, and also might cause behavior changes likes accidents outside a litter box. All this can profoundly impact both sides of the human-animal bond.

An animal not feeling well can feel anxious. After all, no one can explain to that animal what the medical condition is. What’s more, we know that pets, so closely bonded, will pick up on the stress of human family members. Anxiety is contagious.

Other household pets sense that stress as well. And they may exhibit behavior changes because of what’s going on. For example, if one dog has an accident indoors, a second dog might too. Life changes quickly from having fun with multiple pets to feeling frantic.

All this sure isn’t easy—and in many ways not so different from caretaking for a sick human family member, except the good and bad news is having the option of euthanasia when the time is right.

But how do pet owners know when the time is right? How many times have you been asked, “If this was your pet…?” And many clients do seek the professionals’ unbiased opinion, which can be exceedingly valuable, particularly with longtime clients. However, that question isn’t an easy one to answer, even if the answer is obvious.

To a great degree, all situations are different. Some clients simply cannot continue to cope with caretaking or perhaps the expense. Or, frankly, there are just too many accidents in the house or perhaps the dog has uncharacteristically bitten a family member. When the human-animal bond is fractured in a terminally ill animal, isn’t euthanasia a reasonable expectation?

Other clients can’t let go, as their bond is so intense and maybe even made more so through the process of caretaking—they simply can’t bear the notion of euthanasia. And your truthful suggestion is met with defensive resistance, even though the client said, “I want an honest answer.” However, the client really only wants an answer to support a predetermined opinion. Your guidance through this entire process begins with being available and expressing empathy.

Human physicians never deal with all the emotions and issues regarding euthanasia. I am doubtful all human physicians could easily step into the shoes of a veterinary professional. And, as I’ve said, as well as others, “Pet owners do not care how much you know until they know how much you care.”

Complete Article HERE!