My dad’s assisted death was a parting gift.

— I wish I’d said so in his obituary

Kelley Korbin wished she’d included the fact that her father had a medically assisted death in his obituary.

In writing about death, we use euphemisms that sometimes obscure how we actually feel

By Kelley Korbin

My father’s death was something I’d worried about for decades — probably since I learned that smoking kills. But years of pre-emptive angst didn’t prepare me for the crushing heartache that landed like a rock on my chest when he finally died from lung cancer at 82 last year.

I couldn’t have known how the deliberate way he chose to die would become part of his legacy. Or that Mom’s reticence would prevent me from sharing with the world that he had medical assistance in dying. I had hoped to honour my father with an obituary that inspired readers to live harder and love bigger. And, I wanted to package his life with all its complexities and idiosyncrasies into an honest tribute that — if you read between 20 column inches — revealed his authentic nature.

For example, I wrote he regaled us with tales that we never tired of hearing, that he was never one for small talk and that he was his most relaxed self when he travelled. I’ll decipher: Dad always prefaced his (albeit entertaining) stories with, “Stop me if you’ve heard this,” and then launched right in with nary a nanosecond pause for interjections; he did not suffer fools and, without a margarita in hand on a tropical beach, he could be pretty set in his ways.

The one thing I didn’t want to couch was how he died.

I’m reticent to use a hackneyed term like transformational but it’s the only one I have to describe what we experienced. Medical assistance in dying spared Dad many indignities and, for the family he left behind, knowing in advance the exact day and time of his death provided us with a chance to say everything we needed to say and send him off steeped in the love he deserved.

As I watched Dad take his last peaceful breath (not a euphemism, it really was), I was flooded with gratitude for living in a country where my father had the option to forgo a long, slow death. I wanted to share it with the world.

The federal government wants another pause in allowing medical assistance in dying (MAID) requests from those suffering solely from mental illnesses. CBC’s Christine Birak breaks down the division among doctors and what it means for patients who have waited years for a decision.

So, I asked Mom.

“Can I write that Dad had MAID in the obituary?”

“I’d rather you didn’t.”

I’m not usually one to demur. But this was my mother — just a day after her husband of 60 years had died. Plus, obituaries cost a bundle, and she was paying.

“OK, no problem,” I said and went on the hunt for a breadcrumb to drop in the obit. Dad’s death was neither “sudden” nor “unexpected” or “tragic,” leaving me unsure of what coded language to use for assisted dying.

In the end, I settled for the truth: Dad died surrounded by his family as the sun set.

Two women and a man pose for a selfie on a rooftop with palm trees in the distance. They’re all smiling.
Korbin’s parents, David and Judi, were married for 60 years.

For the next year, I regretted what felt like a lie of omission. Then, on the first anniversary of his death, Mom said to me, “It’s taken me a while, but now I see that your dad traded a few months of his life to give us a beautiful death.

She was right.

Dad had always been generous with material things, but his deliberate death was perhaps his greatest gift. Watching him make his difficult decision with grace and equanimity was the bravest thing I’ve experienced. We have always been a close family, but I don’t think any of us, even Dad, could have predicted the way sharing this rite of passage would bring us closer. Even a year after our patriarch’s death, I can feel a deeper intimacy between those of us he left behind.

Beautiful indeed.

I took my mom’s opening to probe further.

“Why didn’t you want me to put MAID in the obituary? Were you worried about the stigma?”

“Me? Stigma? Not at all,” she said, “I just didn’t think it was relevant.”

And then she added, “But I do now. So you go and tell the world about your father’s big, beautiful, assisted death.”

Complete Article HERE!

End-Of-Life

— The One Decision AI Cannot Predict

We often talk about personalized medicine; we hardly ever talk about personalized death.

By Dr. Tal Patalon, MD, LLB, MBA

End-of-life decisions are some of the most intricate and feared resolutions, by both patients and healthcare practitioners. Although multiple sources indicate that people would rather die at home, in developed countries they often end their lives at hospitals, and many times, in acute care settings. A variety of reasons have been suggested to account for this gap, among them the under-utilization of hospice facilities, partially due to delayed referrals. Healthcare professionals do not always initiate conversations about end-of-life, perhaps concerned about causing distress, intervening with patients’ autonomy, or lacking the education and skills of how to discuss these matters.

We associate multiple fears with dying. In my practice as a physician, working in palliative care for years, I have encountered three main fears: fear of pain, fear of separation and fear of the unknown. Yet, living wills, or advanced directives, which could be considered as taking control of the process to some extent, are generally uncommon or insufficiently detailed, leaving family members with an incredibly difficult choice.

Apart from the considerable toll they face, research has demonstrated that next-of-kin or surrogate decision makers can be inaccurate in their prediction of the dying patient’s preferences, possibly as these decisions personally affect them and engage with their own belief systems, and their role as children or parents (the importance of the latter demonstrated in a study from Ann Arbor).

Can we possibly spare these decisions from family members or treating physicians by outsourcing them to computerized systems? And if we can, should we?

AI For End-Of-Life Decisions

Discussions about a “patient preference predictor” are not new, however, they have been recently gaining traction in the medical community (like these two excellent 2023 research papers from Switzerland and Germany), as rapidly evolving AI capabilities are shifting the debate from the hypothetical bioethical sphere into the concrete one. Nonetheless, this is still under development, and end-of-life AI algorithms have not been clinically adopted.

Last year, researchers from Munich and Cambridge published a proof-of-concept study showcasing a machine-learning model that advises on a range of medical moral dilemma: the Medical ETHics ADvisor, or METHAD. The authors stated that they chose a specific moral construct, or set of principles, on which they trained the algorithm. This is important to understand, and though admirable and necessary to have been clearly mentioned in their paper, it does not solve a basic problem with end-of-life “decision support systems”: which set of values should such algorithms be based on?

When training an algorithm, data scientists usually need a “ground truth” to base their algorithm on, often an objective unequivocal metric. Let us consider an algorithm that diagnoses skin cancer from an image of a lesion; the “correct” answer is either benign or malignant – in other words, defined variables we can train the algorithm on. However, with end-of-life decisions, such as do-not-attempt-resuscitation (as pointedly exemplified in the New England Journal of Medicine), what is the objective truth against which we train or measure the performance of the algorithm?

A possible answer to that would be to exclude moral judgement of any kind and simply attempt to predict the patient’s own wishes; a personalized algorithm. Easier said than done. Predictive algorithms need data to base their prediction on, and in medicine, AI models are often trained on a large comprehensive dataset with relevant fields of information. The problem is that we don’t know what is relevant. Presumably, apart from one’s medical record, paramedical data, such as demographics, socioeconomic status, religious affiliation or spiritual practice, could all be essential information to a patient’s end-of-life preferences. However, such detailed datasets are virtually non-existent. Nonetheless, recent developments of large language models (such as ChatGPT) are allowing us to examine data we were previously unable to process.

If using retrospective data is not good enough, could we train end-of-life algorithms hypothetically? Imagine we question thousands of people on imaginary scenarios. Could we trust that their answers represent their true wishes? It can be reasonably argued that none of us can predict how we might react in real-life situations, rendering this solution unreliable.

Other challenges exist as well. If we do decide to trust an end-of-life algorithm, what would be the minimal threshold of accuracy we would accept? Whichever the benchmark, we will have to openly present this to patients and physicians. It is difficult to imagine facing a family at such a trying moment and saying “your loved one is in critical condition, and a decision has to be made. An algorithm predicts that your mother/son/wife would have chosen to…, but bear in mind, the algorithm is only right in 87% of the time.” Does this really help, or does it create more difficulty, especially if the recommendation is against the family’s wishes, or is delivered to people who are not tech savvy and will struggle to grasp the concept of algorithm bias or inaccuracies.

This is even more pronounced when we consider the “black box” or non-explainable characteristic of many machine learning algorithms, leaving us unable to question the model and what it bases its recommendation on. Explainability, though discussed in the wider context of AI, is particularly relevant in ethical questions, where reasoning can help us become resigned.

Few of us are ever ready to make an end-of-life decision, though it is the only certain and predictable event at any given time. The more we own up to our decisions now, the less dependent we will be on AI to fill in the gap. Claiming our personal choice means we will never need a personalized algorithm.

Complete Article HERE!

Let’s stop calling medical aid in dying ‘suicide’

By Kenneth Norton

The New Hampshire legislature is considering a bill to join our Maine and Vermont neighbors to allow New Hampshire residents with a terminal illness, in consultation with two medical providers, the option of ending their suffering and having a peaceful death. As a Licensed Independent Clinical Social Worker who has spent over four decades working to prevent suicide at the local, state, national and international level, I think it is time to look closely at the differences between the two, and stop referring to medical aid in dying as suicide.

Legally, in the 10 states and Washington D.C. where medical aid in dying is allowed, the death is not counted as a suicide death. Medical Examiners and Coroners list the underlying terminal illness, which the person was diagnosed with, as the cause of death on the death certificate of patients who utilize medical aid in dying.

People who die by suicide, for whatever reason, no longer wish to live and feel that they have no other option than death. The person who chooses medical aid in dying wants to live yet has been diagnosed with a terminal illness that will end their life, and may cause intense suffering before they die. They are fully informed of other options including palliative care, hospice, and comfort measures. This is not a decision they are allowed to take lightly or at the spur of the moment. It requires thoughtful controls and two medical opinions in support of specific terminal illness.

A high correlation exists between suicide and mental illness. The person who dies by suicide may or may not be rational, or even competent in that moment. Research shows that many suicide deaths are impulsive. Although the person may have contemplated suicide for some time, it may only be a matter of minutes between making the decision to die and then taking their life. By contrast, in medical aid in dying, people go through a formal process with two medical professionals that includes: an assessment of their mental capability, a determination about their terminal illness, an informed consent process including a review of available options, and a mandatory waiting period

People who die by suicide die alone, and often die by violent means. In New Hampshire, over 75% of suicides involve firearms or hanging. Nationally, over 75% of suicide deaths occur in a home or primary residence. These violent deaths result in trauma for their loved ones who return home to find their loved one dead. The scene, shock, and aftermath are so distressing that many people are no longer able to continue to live in their homes. Suicide deaths can also be traumatizing and contribute to PTSD in first responders who are called to the scene.

Family, friends, and loved ones of a person who dies by suicide can experience intense emotions including shock, guilt, anger, shame, regret, and despair as they try to come to terms with the suddenness of the death, and make sense of the often-unanswerable question: “why?” People who are bereaved by suicide may experience suicidal thoughts and are statistically at higher risk themselves for suicide. Suicide deaths are often devasting and life altering for family and friends resulting in a long and complicated grief process that may last years. It is said the person who dies by suicide dies a single death, but their family/friends are left to die a thousand deaths.

By contrast, the person who goes through the medical aid in dying process, frequently includes loved ones in their decision. Most die in their home, surrounded by their family and friends. The death is planned, and peaceful. Family and friends are left at peace knowing that this was their choice and their suffering is over. To be clear, this does not stop those close people from grieving the death, but it eliminates the “whys” and “what ifs” as well as the trauma from a sudden suicide.

Despite our best efforts, there is still considerable shame and stigma associated with, and experienced by family and friends after a suicide. We should be careful not to contribute to that stigma by extending it to medical aid in dying. Whether you support or are opposed to medical aid in dying, we should acknowledge there are significant differences between the two, and we should stop labeling medical aid in dying as suicide.

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!

Demystifying death

– A palliative care specialist’s practical guide to life’s end

Even people who are comfortable discussing death – including the inevitable prospect of their own – might understand little about how it actually tends to unfold unless they’ve experienced it firsthand alongside a loved one. In this brief animation, author Kathryn Mannix, who worked as a palliative care physician for 20 years, offers viewers a sensitive, honest and practical guide to how death tends to progress under normal, or perhaps ideal, circumstances. Pairing her narration with gentle, flowing animations, the UK filmmaker Emily Downe’s short makes a powerful case that there’s deep value in discussing and understanding death well before it touches us.

Preparing to Meet Your Maker, Plus Cake

— The Life of a Death Cafe

Can the “death positive” movement help fix our dysfunctional relationship with the inevitability of human demise?

by Steffie Nelson

An early and pivotal scene in Greta Gerwig’s “Barbie” finds a rager underway at the Dreamhouse. Dressed in sequins and spangles, Margot Robbie leads the Barbies in a choreographed routine to Dua Lipa’s “Dance the Night.” After they throw their synchronized hands in the air, certain that tomorrow will be “the best day ever,” Robbie pauses, an ecstatic perma-grin on her face, and blurts out, “Do you guys ever think about dying?” Screeeech. The dancing stops; Barbie’s grin falls away. “I don’t know why I just said that,” she stammers. “I’m just dying…to dance!” Everyone cheers, the music resumes and all is right once again in Barbieland.

Minus the disco dancing, the scene is a fairly accurate depiction of how conversations around death tend to go in our society. But there are signs that this may be changing, thanks to a growing “death positive” movement that seeks to normalize the recognition and embrace of the ultimate elephant in the room. The movement’s advance can be measured by the growing popularity of Death Cafes such as the one I joined on a recent Thursday afternoon in the L.A. neighborhood of Los Feliz.

Around 20 of us had gathered for the monthly meeting inside a sanctuary hung with silk Buddha tapestries on the second floor of the Philosophical Research Society. Ranging in age from mid-20s to mid-70s, we knew little about each other beyond our common interest in talking about death and dying. As per Death Café tradition, tea, coffee and cake were served. First-timers quickly learned that the meetups were not grief or bereavement groups by another name.

It was during the pandemic that Lui began to explore how Western culture related — and failed to relate — to death.

“It is really just giving people the opportunity to talk about death from whatever perspective they feel is important to them at the moment,” said the event’s founder and facilitator, a 72-year-old artist, transformational psychologist and scholar of comparative religions named Elizabeth Gill Lui.

It was during the pandemic that Lui began to explore how Western culture related — and failed to relate — to death. “You’d think we would find common ground,” she recalled. “Instead, it’s politicized. Because I’m closer to my own death, I felt that I should have been more informed about the issues surrounding death and dying.” Lui took a course on Zoom to become certified as a death doula, or an end-of-life caretaker who provides non-medical assistance and guidance to the dying and those close to them. In September of 2022, she organized her first Death Café at the Philosophical Research Society, a spiritual and cultural center she considers her “intellectual home.” It has met on the third Thursday of the month ever since.

The first-ever Death Café was hosted by Jon Underwood in his London basement in 2011. According to his original guidelines, the meetings must always be not-for-profit and remain fundamentally unstructured. Inviting a guest speaker, selecting a book to discuss, choosing a theme — any such activity disqualifies the event from using the Death Cafe name. The host is obliged only to serve tea, coffee and cake, and open up a conversation.

Because death is not an easy subject to broach, the freeform meetings are designed to help participants find their own way. “If you get people talking about it, they start to find the language,” said Lui. “Everyone has something they can think about and share that needs to be heard.” In this moment in history, when overdoses, suicides, school shootings, climate crises and war are part of the daily discourse, a death discussion might also address societal and environmental devastation.

Caitlin Doughty founded The Order of the Good Death in 2011.

Every meeting brings together newbies and regulars, many of whom are relieved to discover a meaningful social outing devoid of small talk. “From the moment we start talking, it’s authentic,” said Lui. “It gives people the opportunity to touch something that’s at the core of who they are. It’s not about the weather or traffic, or ‘What did you do today?’ I think people are hungry for that.”

On the afternoon I attended, Lui opened the conversation by asking what brought us here. The responses varied from the loss and illness of friends or family members, to the dawning awareness of death by people in their 70s, some of whom were beginning to educate themselves about the right-to-die movement and eco-friendly burial alternatives. Several were end-of-life or grief counselors. A few people admitted they were simply afraid of dying. Whatever our motivations, Lui encouraged us to “befriend death.” When a companion is as constant as death, it is preferable that it be a friend rather than an enemy.

When my turn came, I explained that the death of my beloved dog earlier that year had been part of a personal reckoning around mortality — my own and that of everyone I loved. I admitted that I found the subject difficult to discuss even with close friends. And yet here I was, opening up with a group of strangers. Over the course of two hours, the conversation touched upon the effects of the hallucinogen DMT, Anderson Cooper’s grief podcast, an episode of “Black Mirror” that explored the digital afterlife, and a Getty Villa exhibition about the “Egyptian Book of the Dead.”

Lui’s is just one of a number of Death Cafés that meet in and around Los Angeles. Through the organization’s website you can find information for similar gatherings in San Diego, Santa Barbara and Palm Springs. To date, Death Cafes have been held in 87 countries, from Afghanistan to Zimbabwe, but Lui’s is the only one where you might be served her legendary carrot cake.

Death Cafes are part of what has come to be known as the “death positive” movement. The term can be traced to the work of an L.A. mortician named Caitlin Doughty, who in 2011 founded The Order of the Good Death, an organization that advocates for funeral industry reform and a more openness around death and dying. The pandemic acted as an accelerant for “death positivity,” as millions of people found themselves forced to confront illness and mortality in previously unimaginable ways. Since 2019, membership in the U.S.’s National End of Life Doula Alliance has more than quadrupled, with new training programs being offered across the country to meet demand.

The growing field of end-of-life care is increasingly reflected in popular culture. The title character of Mikki Brammer’s 2023 novel, “The Collected Regrets of Clover,” for example, is a death doula in New York City who attends Death Cafes at the public library and drinks cocktails on the Lower East Side. “The secret to a beautiful death is to live a beautiful life,” Clover’s 87-year-old neighbor Leo tells her as he breathes his last, and more and more resources are consciously intertwining the two. The Brooklyn-based Morbid Anatomy has grown from a blog into an online platform, library and brick-and-mortar space where one can take classes, participate in a “Death Meditation,” and pick up objects like Victorian memento mori and Dia de Los Muertos-related folk art. There’s even a #DeathTok hashtag on TikTok featuring posts with billions of views.

This November, dozens of speakers on subjects such as psychedelic therapy and assisted suicide addressed 600 attendees from the death-and-dying field at the the sixth End Well Symposium in Los Angeles. Professional hospice care has been available for over 50 years — Elizabeth Kübler-Ross’s 1969 book “On Death and Dying,” which introduced the idea of the five stages of death, is a venerated classic but with the death-positive movement, death is being embraced as a vital part of life, not just the end of it.

The site is a wealth of practical resources and information on death preparedness, end-of-life care, funerals and grief.

Things were different as recently as 2018, when Departing Dearly founder Wendy Mullin found herself researching end-of-life services for her mother. “I realized during the process that there were a lot of things that didn’t make sense,” recalled Mullin, a designer of clothing and interiors. “Why are we putting these lacquered boxes in the ground and embalming people?” she wondered. For the creator of the fashion brand Built by Wendy, known for its rock ‘n’ roll tailoring and coveted guitar straps, the presentation of information was its own form of stylistic hell. “Everything was either religious or ugly. I felt like I was looking at the Zales Jewelers of death information.”

Finding no website that spoke to her aesthetically, Mullin began thinking about the need for something new. “Goop — but for death. Instead of lifestyle, what about deathstyle?” she said with a chuckle. In 2019, Mullin started developing a deck and talking to people about the project. When COVID hit, the idea of monetizing a site lost its appeal, and she turned down a couple of potential investors before deciding to build the site as a public offering in her own “punk rock” style.

The main image on the Departing Dearly homepage is a person stage diving into a crowd. It’s an analogy for “the process of dying,” said Mullin. “It’s like jumping into the unknown. You’re hoping someone is gonna catch you. You’re trusting other people to help you.”

The site is a wealth of practical resources and information on death preparedness, end-of-life care, funerals and grief. It also explores how death shows up in art and pop culture, from a classic film like 1965’s “The Loved One” to a virtual reality near-death experience called Virtual Awakening. Recent posts on the Departing Dearly Instagram account feature the show “Succession,” the climate activist group Extinction Rebellion, and the 97-year-old artist Betye Saar, whose large-scale commissioned work “Drifting Toward Twilight” recently opened at The Huntington in Pasadena.

Like Lui, Mullin became certified as a death doula during the pandemic as a way to deepen her relationship with death and dying. The training helped her initiate meaningful conversations with older relatives and allowed her to get more comfortable with her own mortality. Fundamental to her understanding was Ernest Becker’s 1973 book, “Denial of Death,” which posits that our society’s competitive drives toward status and success are elaborate distractions, as Mullin described it, “so we don’t have to stop and look at the fact that we’re gonna die.” (She also links our phone addictions to “death anxiety.”)

“I think it’s literally being ‘woke,’” she said of the decision to face death. “We’re waking up to our own lives.”

Last month, I found myself at the Philosophical Research Society again, this time for a Living Funeral Ceremony. Essentially a guided mortality meditation, this ritual was created and led by Emily Cross, a musician and death doula who runs the Steady Waves Center for Contemplation, an end-of-life space in Dorset, England. Cross had traveled to the U.S. to host several ceremonies on the West Coast; this one was organized with the group Floating, which facilitates events related to music and healing.Although ceremonies at Cross’s center can involve lying in a woven willow coffin, for this one we sat and lay on yoga mats.

I found unexpected solace in the idea that my spirit could exist as a ray of light or the sound of a bell, struck just once but reverberating through eternity.

Cross created the Living Funeral Ceremony after hearing about the South Korean tradition of mock funerals, which were developed to curb the country’s high suicide rates. “The purpose of this ceremony,” she said, while moving softly through the room as we contemplated our own image, “is to enrich your life by bringing death into immediate and clear view.” There were some tears shed as we were guided to say goodbye to everything we knew and loved. Before each mat was placed a clipboard with a single sheet of paper, on which we were to write our last words. Then, Cross began a deep, guided visualization of letting go of our physical bodies as we covered ourselves with a funereal shroud. After some time inhabiting this fugue-like state, we were guided back by her voice.

I will admit that my own “final” words included regrets and unresolved emotions. I am not one of those people who could die happily tomorrow, satisfied that my purpose has been fulfilled. Yet I was surprised to discover that, when contemplating what I might “leave behind” after death, the idea of worldly accomplishments barely registered. My mind wasn’t trained on legacy or immortality, but on love and energy. I found unexpected solace in the idea that my spirit could exist as a ray of light or the sound of a bell, struck just once but reverberating through eternity.

After we came back to “life” and shared our experiences, I felt grateful and glad to get to live another day — and to have time to work on those regrets. When the time does arrive, I hope to have cultivated Lui’s fearlessness. “I want to experience death,” she told us with a smile. “I’m convinced it’s going to be interesting.”

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