‘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!

Tell-Tale Signs A Person Is In Pain At The End Of Life

Pain is a chief concern frequently voiced among patients nearing the end of life, according to a 2020 study published in BMC Palliative Care. Depending on a person’s health status, some people may be more susceptible to pain during the dying process than others. Such may be the case if a person is dying of a particular illness or disease, such as cancer. Research has shown that 64% of advanced-cancer patients report being affected by pain. Health issues related to cognition, however, such as dementia, have been linked with lower rates of reported physical pain.

Pain experienced specifically within the months prior to one’s passing has also been the subject of scientific research. Findings of the 2020 study found that fewer than 1 in 5 people in Canada experience severe pain during their last month of life. Conversely, an alternate 2010 study published in Annals of Internal Medicine found that 60% of patients with arthritis experienced pain within the month before their passing. These findings further demonstrate the influence of health conditions on pain toward the end of life.

Unlike a wound or a scar, pain isn’t something we can see with our own eyes. Therefore, we must rely on other indicators that can help us determine whether a dying person may be experiencing physical discomfort and how we may help ease that pain.

Pay attention to a dying person’s body language

In some cases, a dying person may be able to vocalize that they’re experiencing pain. If not, take note of their body language. If the person grimaces, moans, stiffens, tightens their fists, or clenches their teeth — particularly if this occurs while you’re attempting to shift or reposition them — then these are indications the person may be in pain, according to experts at the Hospice Foundation of America. Additional non-verbal signs may include frowning, fidgeting, deep breathing, crying, sighing, or a facial expression that communicates fear, per Hospice Red River Valley.

In addition to (or instead of) physical pain, a person may also be in mental or emotional pain towards the end of their life. Such pain may present in the form of nightmares, nervous laughter, irritability, crying episodes, anger, boredom, anxiety, or more. For verbal patients, these kinds of emotions may be indirectly expressed with statements like “nobody cares” or other sentiments of doubt, cynicism, apathy, or distrust, amongst other feelings.

Pain relief methods for people who are dying

When tending to a dying person’s physical pain, setting up a system of communication can help caregivers better understand what means of pain management or treatment the person may be in need of. The more specific the terms, the better. Pain descriptors such as sharp, dull, throbbing, burning, constant, or shooting are effective examples, states Hospice Red River Valley. Verbal patients may wish to use these words themselves, or caregivers may offer these words as prompts for patients who communicate non-verbally. Using terms such as these that provide insight into the duration or severity of the pain can also help caregivers track pain progression or improvement.

End-of-life pain treatment methods often involve medication. Depending on the cause and severity of pain, patients may be given over-the-counter (OTC) medications such as acetaminophen or NSAIDs, or may alternatively be given opioid analgesics under careful monitoring by a medical professional, according to 2023 research published in StatPearls. Mental health counseling, spiritual counseling, or acupuncture may also prove helpful. Caregivers can also help prevent the development of pain during the end of life by regularly repositioning individuals who are bed-bound as well as maintaining proper patient dental care.

Complete Article HERE!

How to Plan for the End of Life With Cancer

— Reflect on your wishes ahead of time to help ensure they will be followed.

By Susan Kreimer

No one can predict exactly how long you will live with cancer, whether you have metastatic stage 4 disease (cancer that has spread to distant organs) or a less advanced stage. No matter where you are in your cancer treatment, end-of-life planning can ease some of the burden on you and your loved ones. If you take time now to reflect on your wishes, you can increase the chances you’ll achieve the outcomes you want.

Soon after any cancer diagnosis is a good time to consider end-of-life planning. Your doctor can answer questions about your prognosis, including what the realistic options are and what those treatments can achieve, says Steven Pantilat, MD, the chief of the division of palliative medicine at the University of California in San Francisco.

Laura Shoemaker, DO, the chair of palliative and supportive care at Cleveland Clinic, adds, “Care planning, ideally, is about planning for the entire trajectory of the illness, including but not limited to end of life.”

This can be done at any time and should be tailored to your needs.

Reflect on Your Values, Priorities, and Wishes

This reflection process can be difficult to initiate, but will be well worth it. It should include talking with your family, caretakers, or even a counselor.

“Each person’s plan will be a reflection of their lives, values, and personal priorities,” says Kate Mahan, LCSW, an oncology social work counselor in the Canopy Cancer Survivorship Center at Memorial Hermann the Woodlands Medical Center in Houston.

“It is often helpful to think of this as a series of discussions instead of a single talk,” she adds. “While we all know that no one lives forever, it is often very challenging to consider our own mortality.”

End-of-life planning allows your healthcare team to understand what matters most to you, says Mohana Karlekar, MD, the section chief of palliative care at Vanderbilt University Medical Center in Nashville, Tennessee.

It’s important to think about expressing your end-of-life wishes in writing if your cancer has progressed, or you’re experiencing more complications from your treatments.

This may be the time to ask yourself where you would prefer to spend your final days — for instance, at home or in a hospice house, says Eric Redard, a chaplain and the director of supportive care at High Pointe House, part of the Tufts Medicine Care at Home network, in Haverhill, Massachusetts.

Do you want to accomplish anything special? Is there a meaningful place for you to visit while you’re still mobile? “The list is endless,” says Redard.

Appoint a Decision-Maker

By communicating openly with your healthcare team, you can make more informed choices about the medical care you want if the time comes when doctors and family members have to make decisions on your behalf.

One of the most important end-of-life decisions for any person with a cancer diagnosis involves selecting someone who will be a voice for you when you can’t speak for yourself.

“Ask yourself, who would I want to make decisions for me? Anyone with cancer could — and should — do that,” says Dr. Pantilat.

Your choice can be enforced through a durable power of attorney for healthcare. It’s a type of advance directive, sometimes called a “living will.” This document names your healthcare proxy, the person who will make health-related decisions for you if you can’t communicate them to your providers.

Write Advance Directives

Outline your wishes in advance directives. The following are decisions you may want to consider including in these documents, says Redard. 

  • Tube feeding Nutrients and fluids are provided through an IV or via a tube in the stomach. You can choose if, when, and for how long you would like to be nourished this way.
  • Pain management It’s helpful for advance directives to include how you want the healthcare team to manage your pain. You can request as much pain-numbing medicine as possible, even if it makes you fall asleep, or just enough to reduce pain while allowing you to remain aware of the people around you.
  • Resuscitation and intubation You may decide that a do-not-resuscitate (DNR) order is right for you. This is a medical order written by a doctor that informs healthcare providers not to perform cardiopulmonary resuscitation (CPR) if your heart stops beating. Similarly, a do-not-intubate (DNI) order tells the healthcare team that you don’t want to be put on a ventilator if your breathing stops.
  • Organ and tissue donations You may want to specify that you want to donate your organs, tissues, or both for transplantation. You may be kept on life-sustaining treatment temporarily while they’re removed for donation. To avoid any confusion, consider stating in your advance directive that you are aware of the need for this temporary intervention.
  • Visitors You may wish to make it known in advance who will be able to see you and when. This may include a visit from a religious leader. For some people, such a visit can provide a sense of peace.

Even if you write advance directives, it’s a good idea to discuss them with everyone involved in your care. “There is no substitute for meaningful conversations with loved ones and medical providers about one’s care goals and preferences,” says Dr. Shoemaker.

The advance directives can also specify if you would like to receive palliative care.

Choose Palliative Care

“Palliative care provides symptom control and supportive care along the entire disease continuum, from diagnosis of advanced cancer until the end of life,” says David Hui, MD, the director of supportive and palliative care research at MD Anderson Cancer Center in Houston.

It treats a range of symptoms and stress issues such as pain, fatigue, anxiety, depression, nausea, loss of appetite, and nutrition. 

“We generally advise that patients with advanced cancer gain access to specialist palliative care in a timely manner to help them with their symptom management, quality of life, and decision-making early in the illness trajectory,” says Dr. Hui.

The goal of this approach is to provide an extra layer of support not only for the patient but for loved ones as well, especially family caregivers, according to the Center to Advance Palliative Care. It is appropriate at any age and at any stage of a serious illness, and you can receive it along with curative treatment.

Consider Hospice Care

Hospice care is one branch of palliative care. It delivers medical care for people who are expected to live for six months or less, according to the Hospice Foundation of America.

You may decide to consider hospice when there is a major decline in your physical or mental status, or both, despite medical treatment. Symptoms may include increased pain, significant weight loss, extreme fatigue, shortness of breath, or weakness.

Hospice can help you live with greater comfort if you decide to stop aggressive treatments that may have weakened you physically without curing your cancer or preventing it from spreading. Hospice care does not provide curative therapies or medical intervention that is intended to extend life.

A hospice care team often includes professionals from different disciplines, such as a doctor, nurse, social worker, chaplain, and home health aide. This team can guide you in managing your physical, psychosocial, and spiritual needs. They also support family members and other close unpaid caregivers.

Find Comfort at the End of Life

Finally, remember that end-of-life planning isn’t solely about medical care. It’s also a time when you will need emotional support. So, consider mending broken relationships, surrounding yourself with pictures of family and friends, and playing music that soothes your soul.

“People can write letters to loved ones, forgiving them or reconciling,” Redard says.

End-of-life planning is a topic people tend to shy away from, but it removes the burden from those left behind. “Once it’s over,” says Redard, “there’s relief.”

Complete Article HERE!

Quality palliative care involves open conversations, support for person dying and their loved ones, expert says

— Rhonda Skinner is coming to terms with a hard truth of life — she is dying.

With some help, Rhonda (right) and her family have come to terms with her terminal illness.

by Julia André

Key points:

  • 84-year-old Rhonda Skinner is currently going through end-of-life care with the help of her family
  • By 2066, it’s expected that older Australians will account for up to 23 per cent of the population
  • A palliative care nurse says talking with loved ones about their end-of-life wishes will become increasingly important

The 84-year-old Mount Isa resident has chronic obstructive pulmonary lung disease and atrial fibrillation, and needs a constant supply of oxygen to breathe.

In November, she was told she would be entering palliative care.

For Rhonda Skinner’s nine children, it was a heartbreaking moment, when they realised the head of their family was at her weakest.

“It’s difficult when they tell you. It’s like, ‘Oh my god, mum’s going to die really soon’,” her daughter, Leigh Skinner, said.

“But it isn’t just about imminent death, it’s a progression.”

Older lady and daughter sit at table talking.
Mrs Skinner is adamant that she wants to spend the last days of her life at home.

Rhonda Skinner has been adamant that she does not want to live out her remaining days in hospital, and her family has worked with the palliative care team to ensure her wishes are guaranteed.

“Without the knowledge that we have now we would have just assumed that once mum got really sick she’d have to stay in hospital,” Leigh Skinner said.

“But the palliative team have set up processes so that when we get to the end, mum will be at home,” she said.

As Australia’s population continues to age, experts are eager to change attitudes about the end-of-life care process and educate families on what caring for a dying relative looks like.

Donna McGregor is the sole palliative care nurse for the North West Hospital and Health Service (NWHHS) in Queensland.

To see her patients, she covers hundreds of kilometres across the outback, tending to residents in small, remote communities and on cattle stations.

aerial view of a car crossing a bridge in an outback setting
Palliative care nurse Donna McGregor travels across north west Queensland for her job.

“It’s a privilege to work in palliative care, we have quirky personalities, I guess because we’re dealing with death and dying a lot,” Ms McGregor said.

“We’re dealing with people’s [grief] and supporting them at their most pivotal time in life, and also the most distressing time of their life — making decisions that greatly affect them but also their family.”

Tough conversations

In her 30 years of experience working in palliative care, Ms McGregor has seen a shift in how the psychological impacts of death are treated.

“Having conversations is the most important aspect of palliative care — it isn’t just about the person, it’s about the network around the person,” said Ms McGregor.

Nurse smiles at camera
Palliative care nurse Donna McGregor has seen a shift in the way end of life care is provided.

Australian’s increasing life expectancy and declining birth rates are contributing to the country’s ageing population.

According to the Australian Bureau of Statistics (ABS), the number of older Australians has increased from 1 million (8.3 per cent of the total population) in 1970 to 4.2 million (16 per cent of the total population) in 2020.

By 2066, it’s projected older Australians will make up 21 per cent to 23 per cent of the population.

Ms McGregor believes having hard conversations with loved ones about their end-of-life wishes will become increasingly important.

“It’s absolutely paramount, and good quality palliative care is really good at managing every symptom associated with chronic illness,” she said.

Difference in care

Correna Apiata has experienced the grief and trauma of losing both of her parents.

Ten years ago, she was left scarred by the experience of caring for her father in his final days at home in New Zealand.

Woman smiles at camera
Correna Apiata had different experiences when each of her parents died.

“They pretty much just handed us the instruments and left us to our own devices, it wasn’t good,” Ms Apiata said.

When her mother fell sick while living in Mount Isa, the memory of that time came flooding back to her.

However, the experience with her mother was very different.

“Donna [McGregor], she just made everything easier — if there was a moment we couldn’t get to Mum, she’d be like, ‘I’m free I can go,'” Ms Apiata said.

“She made all the hard stuff easy, even the funeral arrangements. We knew that she was just a phone call away.”

New funding will make Ms McGregor’s job easier in the outback, as the NWHHS has received $850,000 from the state government to recruit four new palliative care positions.

“We’ll have a social work department and a full-time Indigenous health worker because as you can imagine demand is going to increase,” she said.

Complete Article HERE!

‘Devastated’

— PeaceHealth makes cuts to palliative care

Karen Lerner sits at the kitchen table of her Bellingham home. She has been a PeaceHealth palliative care patient since her cancer diagnosis two and a half years ago. Lerner is switching to remote palliative care through Seattle’s Fred Hutchinson Cancer Center because PeaceHealth is reducing its program on May 26. “That was devastating to me,” she said.

By RALPH SCHWARTZ

PeaceHealth in Whatcom County is ending comprehensive outpatient palliative care on May 26, reducing staff to one nurse and one social worker for in-home care of seriously ill patients.

Criticism of the decision has been harsh, with some patients and observers saying it goes directly against PeaceHealth’s mission.

“This community, Whatcom County, has really been a leader in serious-illness and end-of-life care for the past decade, and I just feel like they cut us off at the knees,” said Marie Eaton, whose title is community champion at the Palliative Care Institute at Western Washington University.

Eaton and others, including retired PeaceHealth physician Meg Jacobson, who was board-certified in palliative medicine, said PeaceHealth broke a promise when it decided to cut palliative care after convincing donors to give more than $2 million to launch the program several years ago.

“PeaceHealth had assured us that we would keep it going,” Jacobson said. “And they just lied. I don’t know what they’re telling donors.”

In a May 16 statement to Cascadia Daily News, Bryan Stewart, system vice president for PeaceHealth’s Home and Community Division, said the health care provider couldn’t justify continuing the program, given the high cost of palliative care.

“On average, insurance reimbursement only covers 15–20 percent of the palliative care program costs,” Stewart said. “With rising costs across all service lines, it was simply not feasible to continue offering the comprehensive outpatient palliative program.”

Eaton said she understood PeaceHealth’s financial difficulties, but “the decimation of the outpatient palliative care program is particularly disturbing.”

“We raised millions of dollars with the promise that PeaceHealth would take it over in five years,” Eaton said. “I frankly feel betrayed.”

Stewart said the PeaceHealth St. Joseph Medical Center Foundation received a single, $1.25 million gift to launch the outpatient palliative care program, with an additional $1 million contributed by community members.

Stewart confirmed PeaceHealth had made a promise — with a caveat.

“The Foundation was clear with donors at the onset that PeaceHealth’s commitment was to support the palliative care program beyond the five-year Foundation investment, understanding that as the program evolved over time, operational changes might be necessary,” Stewart said. “Unfortunately, the stress caused by the pandemic on our health care system, coupled with under-reimbursement, high program expenses and relatively low number of patients served, led to the recently announced changes.”

In a recent review of its programs, PeaceHealth also decided to close its allergy clinic and overnight sleep lab.

A patient’s story

Karen Lerner was diagnosed with metastatic melanoma two and a half years ago, after doctors found a bleeding tumor in her brain. She learned about the cuts to palliative care on a recent phone call with her pharmacist.

“That was devastating to me and, I’m sure, to them,” Lerner said, referring to the palliative care workers who supported her. “It’s an amazing team of care providers and volunteers that can’t be replaced, as great as my personal care physician is.

Palliative care goes the extra mile for patients who are in extreme circumstances. PeaceHealth’s program cared for people diagnosed with cancer; chronic obstructive pulmonary disease, or COPD; congestive heart failure; and those who “graduated from hospice,” Eaton said.

Lerner was an unusual case. The side effects to her treatments included painful reactions that even made certain clothing unbearable.

“My doctor says that I’m an outlier, but my skin hurts all the time,” Lerner said. Her palliative care pharmacist, nurse and physician “have been really good about never giving up, in terms of trying to find the best medication regimen for me.”

“A normal pharmacist, [primary care physician] or oncologist, they don’t have the time or the ability to really look into things and help solve problems.”

Lerner said PeaceHealth staff couldn’t tell her where to turn for comprehensive palliative care after May 26. She considers herself fortunate, however. She lined up remote palliative care through Fred Hutchinson Cancer Center in Seattle, where she has been receiving her cancer treatments.

“There are so many people who are isolated and don’t have the resources that I do, that are just going to fall through the cracks with this, I’m sure,” she said.

After the cuts to palliative care, Eaton predicts that many of the patients currently in the program will begin to cycle in and out of the emergency room.

“One hundred people is too much for one nurse and one social worker to manage,” Eaton said. “To be able to stay in your home and have your symptoms managed by a social worker, nurse, physician and chaplain means your quality of life is so much better.”

Stewart put the number of in-home palliative care patients at 64. He also emphasized that cancer patients will get additional care. An oncology physician assistant, he said, will “focus exclusively on the palliative care needs of this vulnerable population.”

PeaceHealth’s mission

Eaton said that palliative care may not be a money-maker for a health care provider, but it can be a money-saver.

“It gets people into hospice sooner, where they can be covered by Medicare,” she said. “It reduces the number of [emergency department] visits.”

Jacobson also acknowledged that palliative care places a financial burden on health care systems, noting that they can’t bill for the services of a social worker or a chaplain.

“And doctors who do palliative care don’t see enough patients to make money for the institution,” Jacobson said. “So it was always going to be something that they were going to have to commit to, as a mission-driven service.”

PeaceHealth’s mission statement, posted online, says, “We carry on the healing mission of Jesus Christ by promoting personal and community health, relieving pain and suffering, and treating each person in a loving and caring way.”

Lerner, a cancer patient, took a dim view of the statement.

“The ironic thing, if you look at the PeaceHealth mission statement, it’s supposed to be for the care and relief of pain and suffering,” she said. “Instead, it’s more like, ‘for-profit, tax-exempt.’ That seems to be their mission.”

Complete Article HERE!

Weighing Risks of a Major Surgery

— 7 Questions Older Americans Should Ask Their Surgeon

BY Judith Graham

Larry McMahon, who turns 80 this month, is weighing whether to undergo a major surgery. Over the past five years, his back pain has intensified. Physical therapy, muscle relaxants, and injections aren’t offering relief.

“It’s a pain that leaves me hardly able to do anything,” he said.

Should McMahon, a retired Virginia state trooper who now lives in Southport, North Carolina, try spinal fusion surgery, a procedure that can take up to six hours? (Eight years ago, he had a lumbar laminectomy, another arduous back surgery.)

“Will I recover in six months — or in a couple of years? Is it safe for a man of my age with various health issues to be put to sleep for a long period of time?” McMahon asked, relaying some of his concerns to me in a phone conversation.

Older adults contemplating major surgery often aren’t sure whether to proceed. In many cases, surgery can be lifesaving or improve a senior’s quality of life. But advanced age puts people at greater risk of unwanted outcomes, including difficulty with daily activities, extended hospitalizations, problems moving around, and the loss of independence.

I wrote in November about a new study that shed light on some risks seniors face when having invasive procedures. But readers wanted to know more. How does one determine if potential benefits from major surgery are worth the risks? And what questions should older adults ask as they try to figure this out? I asked several experts for their recommendations. Here’s some of what they suggested.

What’s the goal of this surgery? Ask your surgeon, “How is this surgery going to make things better for me?” said Margaret “Gretchen” Schwarze, an associate professor of surgery at the University of Wisconsin School of Medicine and Public Health. Will it extend your life by removing a fast-growing tumor? Will your quality of life improve by making it easier to walk? Will it prevent you from becoming disabled, akin to a hip replacement?

If your surgeon says, “We need to remove this growth or clear this blockage,” ask what impact that will have on your daily life. Just because an abnormality such as a hernia has been found doesn’t mean it has to be addressed, especially if you don’t have bothersome symptoms and the procedure comes with complications, said Drs. Robert Becher and Thomas Gill of Yale University, authors of that recent paper on major surgery in older adults.

If things go well, what can I expect? Schwarze, a vascular surgeon, often cares for patients with abdominal aortic aneurysms, an enlargement in a major blood vessel that can be life-threatening if it bursts.

Here’s how she describes a “best case” surgical scenario for that condition: “Surgery will be about four to five hours. When it’s over, you’ll be in the ICU with a breathing tube overnight for a day or two. Then, you’ll be in the hospital for another week or so. Afterwards, you’ll probably have to go to rehab to get your strength back, but I think you can get back home in three to four weeks, and it’ll probably take you two to three months to feel like you did before surgery.”

Among other things people might ask their surgeon, according to a patient brochure Schwarze’s team has created: What will my daily life look like right after surgery? Three months later? One year later? Will I need help, and for how long? Will tubes or drains be inserted?

If things don’t go well, what can I expect? A “worst case” scenario might look like this, according to Schwarze: “You have surgery, and you go to the ICU, and you have serious complications. You have a heart attack. Three weeks after surgery, you’re still in the ICU with a breathing tube, and you’ve lost most of your strength, and there’s no chance of ever getting home again. Or, the surgery didn’t work, and still you’ve gone through all this.”

“People often think I’ll just die on the operating table if things go wrong,” said Dr. Emily Finlayson, director of the UCSF Center for Surgery in Older Adults in San Francisco. “But we’re very good at rescuing people, and we can keep you alive for a long time. The reality is, there can be a lot of pain and suffering and interventions like feeding tubes and ventilators if things don’t go the way we hope.”

Given my health, age, and functional status, what’s the most likely outcome? Once your surgeon has walked you through various scenarios, ask, “Do I really need to have this surgery, in your opinion?” and “What outcomes do you think are most likely for me?” Finlayson advised. Research suggests that older adults who are frail, have cognitive impairment, or other serious conditions such as heart disease have worse experiences with major surgery. Also, seniors in their 80s and 90s are at higher risk of things going wrong.

“It’s important to have family or friends in the room for these conversations with high-risk patients,” Finlayson said. Many seniors have some level of cognitive difficulties and may need assistance working through complex decisions.

What are the alternatives? Make sure your physician tells you what the nonsurgical options are, Finlayson said. Older men with prostate cancer, for instance, might want to consider “watchful waiting,” ongoing monitoring of their symptoms, rather than risk invasive surgery. Women in their 80s who develop a small breast cancer may opt to leave it alone if removing it poses a risk, given other health factors.

Because of Larry McMahon’s age and underlying medical issues (a 2021 knee replacement that hasn’t healed, arthritis, high blood pressure), his neurosurgeon suggested he explore other interventions, including more injections and physical therapy, before surgery. “He told me, ‘I make my money from surgery, but that’s a last resort,” McMahon said.

What can I do to prepare myself? “Preparing for surgery is really vital for older adults: If patients do a few things that doctors recommend — stop smoking, lose weight, walk more, eat better — they can decrease the likelihood of complications and the number of days spent in the hospital,” said Dr. Sandhya Lagoo-Deenadayalan, a leader in Duke University Medical Center’s Perioperative Optimization of Senior Health program.

When older patients are recommended to POSH, they receive a comprehensive evaluation of their medications, nutritional status, mobility, preexisting conditions, ability to perform daily activities, and support at home. They leave with a “to-do” list of recommended actions, usually starting several weeks before surgery.

If your hospital doesn’t have a program of this kind, ask your physician, “How can I get my body and mind ready” before having surgery, Finlayson said. Also ask: “How can I prepare my home in advance to anticipate what I’ll need during recovery?”

What will recovery look like? There are three levels to consider: What will recovery in the hospital entail? Will you be transferred to a facility for rehabilitation? And what will recovery be like at home?

Ask how long you’re likely to stay in the hospital. Will you have pain, or aftereffects from the anesthesia? Preserving cognition is a concern, and you might want to ask your anesthesiologist what you can do to maintain cognitive functioning following surgery. If you go to a rehab center, you’ll want to know what kind of therapy you’ll need and whether you can expect to return to your baseline level of functioning.

During the covid-19 pandemic, “a lot of older adults have opted to go home instead of to rehab, and it’s really important to make sure they have appropriate support,” said Dr. Rachelle Bernacki, director of care transformation and postoperative services at the Center for Geriatric Surgery at Brigham and Women’s Hospital in Boston.

For some older adults, a loss of independence after surgery may be permanent. Be sure to inquire what your options are should that occur.

Complete Article HERE!

A new vision for death and dying

— The Lancet Commission on the Value of Death

The story of dying in the 21st century is a story of paradox. Covid-19 has meant people have died the ultimate medicalised deaths, often alone in hospitals with little communication with their families. But in other settings, including in some lower income countries, many people remain undertreated, dying of preventable conditions and without access to basic pain relief. The unbalanced and contradictory picture of death and dying is the basis for the Lancet Commission on the Value of Death. Drawing on multidisciplinary perspectives from around the globe, the Commissioners argue that death and life are bound together: without death there would be no life. The Commission proposes a new vision for death and dying, with greater community involvement alongside health and social care services, and increased bereavement support.