A Compassionate Journey

— The Transition from Palliative Care to Hospice

By Mazhar Abbas

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

Understanding the Transition: From Palliative Care to Hospice

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

Key Indicators for Hospice Care

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

Building a Supportive Community

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

Complete Article HERE!

What Dying Feels Like

— Palliative Care Doctor

Although a dying person tends to spend more and more time asleep or unconscious, there may be a surge of brain activity just before death

By Denyse O’Leary

Wednesday was Ash Wednesday in the Western Catholic tradition. It marks the beginning of Lent, a season of reflection and repentance. A common custom is that, during the service, the priest traces the sign of the cross in ashes on the penitent’s forehead, saying “You are dust and you will return to dust” (Gen 3:19). It’s one of many customs worldwide that offer a sobering reflection on the inevitability of death for all of us — unless, of course, we are transhumanists who genuinely believe that technology can grant us immortality.

What does dying actually feel like?

Most human beings have always believed that the essence of a human being survives the death of the body though the outcome is envisioned in a variety of ways. But, assuming that pain and distress are controlled, what does dying actually feel like? Can science tell us anything about that?

Caregiver supporting sick woman with cancer dying in the hospital

At BBC Science Focus, palliative care doctor Kathryn Mannix offers a few thoughts from long experience, including:

A dying person spends progressively less time awake. What looks like sleep, though, gradually becomes something else: dipping into unconsciousness for increasing periods. On waking, people report having slept peacefully, with no sense of having been unconscious…
As dying progresses the heart beats less strongly, blood pressure falls, skin cools down and nails become dusky. Internal organs function less as blood pressure drops. There may be periods of restlessness or moments of confusion, or just gradually deepening unconsciousness…
Breathing moves from deep to shallow and from fast to slow in repeating cycles; eventually breathing slows and becomes very shallow; there are pauses; and, finally, breathing ceases. A few minutes later, the heart will stop beating as it runs out of oxygen.
Kathryn Mannix, “What does dying feel like? A doctor explains what we know” BBC Science Focus, February 10, 2024

Surge of brain activity just before death

We are also learning that, contrary to what we might have expected, the brain does not necessarily just die down quietly. Researchers have recorded a surge of activity just before death:

To that end, the brain activity of four people who passed away in hospitals while being monitored by an EEG (electrogram) device was studied.
“The data generated, even though it’s only four patients, is massive, so we were able to only report a fraction of the features that it’s actually showing on the data,” Prof. Borjigin said.
At the time of death, brain activity was detected in the TPJ region of the brain — named because it’s the junction between the temporal, parietal and occipital lobes in the back of the brain.
Dan Gray, “Study finds evidence of increased brain activity in people right before they die,” Medical News Today, May 5, 2023. The paper is open access.

There may be a correlation between the surge of activity and near-death experiences, though that wouldn’t account for the NDEs of people who showed no neurological activity.

In any event, cells deprived of oxygen are doomed. But that does not mean that all of the body’s cells cease to function immediately when a person dies:

The brain and nerve cells require a constant supply of oxygen and will die within a few minutes, once you stop breathing. The next to go will be the heart, followed by the liver, then the kidneys and pancreas, which can last for about an hour. Skin, tendons, heart valves and corneas will still be alive after a day. White blood cells, which are more independent, can keep going for almost three days.
Luis Villazon, “When we die, does our whole body die at the same time? ”BBC Science Focus, nd.

So when a medic declares a person dead, that means that the death process is past the point of no return, not that every cell in the body is dead.

Terminal lucidity — getting in the last word

There are many stories through the ages of people near death suddenly waking up and saying something lucid. Researchers who study the phenomenon call it terminal lucidity. At Psychology Today in 2018, nurse educator Marilyn Mendoza noted regarding research to date::

So far, the response rate to the questionnaire he distributed has been limited. While the results are in no way definitive, out of the 227 dementia patients tracked, approximately 10 percent exhibited terminal lucidity. From his literature review, Nahm has reported that approximately 84 percent of people who experience terminal lucidity will die within a week, with 42 percent dying the same day.
Marilyn Mendoza, “Why Some People Rally for One Last Goodbye Before Death,” Psychology Today, October 10, 2018

As to why it happens, she offers,

There is as yet no logical scientific answer to this medical mystery. There is just not enough information to postulate a definitive mechanism for terminal lucidity. The fact that it occurs in people with different diseases suggests that there may be different processes occurring. Some speculate that this could be a spiritual experience or divine gift. It certainly is a gift for family members attending the death to have one last opportunity to be with their loved one and to say their last goodbyes. Both family members and caregivers who have been witness to this state that they feel changed by the experience.
Mendoza, “One Last Goodbye”

One interesting trend is this: Fifty years ago, slick media commentators expected to report that research into death and dying would explod all those myths about a soul or the hereafter or the human mind. But the opposite has happened. Topics like terminal lucidity and near-death experiences are conventionally researched now. And it’s just as clear now as it was fifty years ago that life is a journey and death is not, itself, the destination; rather, it’s a gateway to one.

Complete Article HERE!

Death Cleaning

— How to Survive an Estate Clean-Out After Loss

Advice from experts including a death doula on processing a home full of items while grieving

By

Organizing and clearing out an entire home is not most people’s idea of a good time. Doing so while grieving compounds that sense of dread and overwhelm. So perhaps it’s a bit of a surprise that The Gentle Art of Swedish Death Cleaning, Margareta Magnusson’s 2017 book chronicling her approach to ordering an estate in the wake of a loss, was a smash success. Her humorous, accessible guide amassed a cult following among an audience of fans that grew even larger after Peacock released its eight-episode series of the same name last year. But because both the book and the show it inspired tackled an issue that most people will encounter—and one that’s often swept under the proverbial rug—perhaps it’s not all that surprising that consumers found themselves clamoring for more content on post-loss decluttering.

Public meditations on grief and discussions around it seem more easily broached following the COVID pandemic, which spurred a reckoning in how we deal with mourning. The years since 2020 have been characterized by plenty of discourse on grieving, Zoom grief groups, and other bereavement support efforts, opening the floodgates on conversations that might have struck folks as morbid prior but now feel decidedly necessary to have out in the open. Podcasts like Anderson Cooper’s All There Is serve an audience of those looking to reflect on loss and how to live afterward. In cleaning out the New York City home of his late mother, the celebrated designer and socialite Gloria Vanderbilt, Cooper was guided by a number of handwritten notes Vanderbilt left like breadcrumbs to help him along. “These are Daddy’s pyjamas,” read one dispatch on a piece of paper near a pair of satin trousers.

Family portrait of the Coopers as they play on a sofa in their home Southampton Long Island New York March 30 1972....
Family portrait of the Coopers as they play on a sofa in their home, Southampton, Long Island, New York, March 30, 1972. American author and actor Wyatt Emory Cooper and heiress Gloria Vanderbilt Cooper sit with their sons, Carter (1965 – 1988) and Anderson Cooper.

Not everyone is given such clear direction in how to sort through a loved one’s dwelling after their passing. AD caught up with some experts on the subject, including a professional organizer, the owner of a liquidation and clean-out service, a death doula, and Magnusson herself, to advise on how to face the inevitable task—which all our pros say can, and should, be put into practice before a loss occurs. “Start before you are too old, or too weak, or get that final diagnosis,” Magnusson tells AD. “The upside is a better, easier life in which you don’t have to worry about the people you leave behind and all your crap they have to go through.”

How do I clear out a house after someone dies?

Both Magnusson and Mark Ferracci, owner of the Central Maryland–based clean-out and liquidation service Sanford & Son Estate Specialists, say that age 60 is the time to start organizing the objects of your estate for those who will someday have to clear it all out.

Allie Shaw, a professional organizer operating in the Greater Toronto area, recommends starting off by taking inventory of all the important items inside the abode, including anything of sentimental value (like photo albums, beloved heirlooms, or official documents) or monetary value (such as jewelry or china). When her own mother was given months to live, she became Shaw’s first client. Over 10 months, Shaw and her mother “had lots of conversations, going through possessions room-by-room and item-by-item,” she says. “It was very cathartic and it was a time in my life that I was so grateful for. She often said, ‘I got more months because we had this time.’”

In conversations about death and estate organizing it may go without saying, but Shaw encourages having formal documentation in place, like a will indicating your wishes for certain belongings. Though the act of preparing a will and even death cleaning an abode while the resident is still alive and well might feel bleak to some people, it’s important to remember that setting things in order can alleviate major stress later down the line. “It is a monumental task and often people think they’re leaving everything behind as a gift, when I’d say most of the time it’s a big burden,” Shaw explains.

Consider what you can manage and when to call in the estate cleaning pros

There’s no rule of thumb to tell whether your particular estate will need a whole team of professionals to clean out. But whether it’s a small apartment or a sprawling mansion, clearing a loved one’s spaces after they’ve died is rarely a one-person job. Particularly for those who value sustainability and cringe at the thought of wasting the beloved items of a family member’s residence, estate clean-out services like Ferracci’s might be the way to go as they’re plugged into the proper channels to help prevent waste. His team is trained to recycle materials, to facilitate the sale of pieces that have value, and to donate items that no longer have a place with the deceased’s family members before resorting to the dumpster.

Death Cleaning How to Survive an Estate CleanOut After Loss

Like a number of estate clean-out services, Ferracci’s process begins with a simple conversation—an informal chat for which he doesn’t charge that takes place in the abode. “I always say the same thing to people: Get the personal stuff out, get the financial-related stuff out, get the family mementos out; things that you want, those are key,” he says of his preliminary discussions with clients. Making sure family members have combed through the residence for items they hold dear so that all that’s left are things they won’t mind parting with is crucial. “Before I come in to do the job, I want to know that all that stuff’s gone and that everybody’s picked through it.”

How much does it cost to hire professionals for estate cleaning? And how long will it take?

The cost of an estate clean-out varies by how large the home is, which determines how big of a crew the service will need and how many days to allot for the project. A typical family home will likely take two to three days for Ferracci’s team to process, and he estimates that 90% of his average clean-outs cost between between $2,500 and $5,000. His team will sometimes purchase items to sell from clients’ estates, which can help offset that cost: “One [clean-out] I just started, I quoted them $4,400. I gave them $800 for the contents and the price was $3,600, and I’ll be there about two and a half days.” Condos and smaller spaces will generally cost less, while hoarding situations as well as larger abodes drive the price tag up. Though it’s not the norm, Ferracci has encountered homes where the bill was as high as $20,000 to clean everything out.

If you’re coming at an estate clean-out from the “gentle” perspective, meaning you have time to get things in order while the resident is still with us, an organizer may be the way to get things going gradually. As Magnusson advises, “death cleaning is for the living.” Shaw says that in her experience, organizers will charge $50 to $100 an hour. The process usually takes place across several sessions of two or three hours each in order to get a sense for the volume and how much accounting there is to do.

How can I deal with the death-cleaning process while grieving?

Getting ahead of organizing and cleaning a home before a loss takes place is ideal, but that’s just not always possible. It’s likely that the majority of people faced with clearing out a loved one’s estate are still in the grieving process. Even when it’s not a full estate but rather a few rooms with the deceased’s items, the emotional weight can be heavy. Magnusson found clearing out her husband’s spaces in their shared home after his death, particularly his clothing, was “the saddest thing I have ever done.”

Death Cleaning How to Survive an Estate CleanOut After Loss

Some mourners seek the services of a death coach or death doula to help them navigate the complex emotions that surface during grieving. The process of estate cleaning, which can be stressful under any circumstances, is particularly difficult after a loss. New York City–based death doula Mangda Sengvanhpheng knows that there’s no official guidebook to navigating loss, but when it comes to sorting through the ephemera of a loved one’s life, it’s helpful to have a group of helpers around: “Whether that is with your family members, your loved ones, friends, doulas, therapists, whoever it is that can become a support team, find those people to help you move through that,” she suggests.

Parsing through the objects of a deceased family member’s home can often make for bitter fighting between relatives, something both Ferracci and Sengvanhpheng have experienced in their work. Whether or not there are fights over which items go to whom or which things should be kept versus which should be tossed, finding difficulty in the process of going through these items can be viewed as a microcosm for grief in general. For certain things from an estate that we simply have no place for, it’s ultimately about acknowledging that love and value and then letting go.

“An object is an object, right? A table is a table. But these things have meaning because we imbue meaning in them,” Sengvanhpheng says. “There are stories in the objects, there are memories in the objects. When we lose people, as irrational as it may feel, there’s a reason for [feeling tied to objects]. We lose someone physically and these items—something tangible from them that we’re holding onto—mean so much.”

Parting with a loved one’s things can feel like a jarring reality check in the wake of a loss. Sengvanhpheng’s work involves trying to reframe that: “Letting go of items can be a form of acceptance,” she says. “If, for example, your sister takes something from your mother’s estate that you wanted, you can acknowledge that and then find ways to accept that this is just the reality. How can we start letting go? We consider how you can connect to your mom in a different way.”

Sometimes, there’s a melancholy beauty about ushering these emotionally charged objects into their next phase and assigning them a new narrative. Grief coach Charlene Lam curated an art show on the experience of going through her mother’s home and the objects she decided to keep and discard. When Shaw was taking inventory of her mother’s estate, she happened upon a beautiful rocking chair that had a long history in the family and was very beloved to her mother. They landed on donating it to the local library so that generations to come might make good use of it. “It’s still there and they love it,” she says.

Delaying the death-cleaning process can end up costing you

For many people in the golden years of their life, Ferracci’s seen enough to recommend downsizing when a large family home no longer serves your needs. He’s met clients who have proclaimed that their parents’ move from a big house to a smaller condo in their twilight years was “the best thing they’d ever done”—giving them ability to travel, save money, and ease the burden of sorting through a massive house for their children when that time came. When elderly homeowners aren’t capable of maintaining their houses, issues like accumulated clutter, mold, rot, and overgrown yards can make for an especially pricey clean-out and can even cause the home’s value to go down.

For those looking to list the family home after clearing it out, delaying on a needed clean-out runs the risk of confronting a more difficult selling market later down the line. “You’re going to continue to do the maintenance and you continue to pay the bills for the house, and the house is vacant, and interest rates can start to go up,” Ferracci says. He’s dealt with clients who struggled to sort through items or found themselves in gridlock with family members about what to do with the estate, ultimately leading them to list the residence many months later for thousands less than if they would have been more efficient in the clean-out process.

Ultimately, your pace is your choice. How to prepare for a loss, or even your own death, is not something AD purports to have all the answers on, but dealing with the items of our lives is manageable with the proper tools, outlook, and support. “We are all dying,” Magnusson says. “This is not morbid. It is just fact. Take care of it.”

Complete Article HERE!

We are all going to die

— During my first several hours administering ashes as a hospital chaplain, I kept cringing.

Chaplain Angela Song, right, places ashes on the forehead of surgeon Michele Carpenter at Providence St. Joseph Hospital in Orange, California, in February 2023.

By Rachel Rim

Inside the vast, dimly lit chapel, I stand beside a stool that holds Q-tips, a number ticker, and a small jar of ash. The chapel is musty and dark, its stained-glass windows allowing little light to permeate the pews. It lacks a cross, bimah, or any other particular faith marker. This chapel is not a gathering place for a specific community but a refuge for the thousands of patients, family members, and staff who enter the Columbia University Irving Medical Center each day.

Nurses in navy scrubs begin to queue outside the entrance, and I ready a Q-tip in one hand and the jar of ash in the other. Then, as each person squats before my five-foot frame, I check their badge, make a black cross on their forehead, address them by name, and say, “Remember that you are dust, and to dust you shall return.”

Most of them murmur a thank-you and leave; a few walk past me to sit silently in the pews. One or two enthusiastically tell me how glad they are that the hospital offers ashes on Ash Wednesday. The mood, however, is mainly somber, and I wonder as I administer the ashes what these colleagues of mine—nurses and doctors and social workers—are thinking as they receive a sign of death on their bodies before making their way to the dying bodies they are caring for.

Ash Wednesday is the busiest day of the year for our spiritual care department. It’s a whole-team affair: the Catholic priest attends to specific sacramental needs, the chaplains who are comfortable with the imposition of ashes each cover an assigned part of the hospital, and those who are not handle the litany of calls and referrals that make up a day at the hospital. Like a symphony, it takes everyone doing their part to play the piece.

Last year, the day after Ash Wednesday I was sitting with my chaplain cohort when I saw a New York Times article about a man who was being investigated for hate crimes after multiple incidents in which he punched Asian Americans on the subway. I found myself suddenly in tears, unable to breathe—an intensely physiological response that was unusual for me. When my supervisor, a rabbi, realized what state I was in, she promptly invited me to accompany her and another chaplain friend to visit a colleague who’d gone into labor the day before. We made our way over to the maternity ward and held the beautiful baby. At the new mother’s request, we each spoke a blessing over the infant—one Jewish blessing, one Christian blessing, and one Indigenous blessing, representing each of our traditions. As we stood in the quiet, clean room blessing this new life that had entered the world on Ash Wednesday, my body calmed and I relaxed into the safety of my friends.

The mother, also a rabbi, now says that Ash Wednesday is her favorite non-Jewish holiday. She loves the personal resonance she feels with it as her daughter’s birthday, as well as the memory of the sacred moment of mutual blessing and respect that we shared the following day.

I, too, have come to love Ash Wednesday differently after two years of working in the hospital on this day. For me, the memory of being invited to provide a blessing in my own tradition to this daughter of a rabbi feels like the embodiment of interfaith chaplaincy. It baptizes this day with a kind of hospitality, marking it not merely as a day of somber repentance and meditation on mortality but also one of generosity and grace, a day that all can participate in regardless of their faith tradition.

The first time I administered ashes at the hospital, I was shocked both by how many people—patients, staff, visitors—wanted ashes and by the genuine gratitude and peace they seemed to feel upon receiving them. It felt incongruent to me, to feel peace at a symbol of one’s mortality: Why were they so grateful to have a stranger remind them that they will one day die? I felt as though I were saying, “Hello, good doctor—receive this sign that one day you will die just as inevitably as all your patients will.” I cringed for the first several hours that I administered ashes.

Then something shifted. I went to the pediatric ward and administered ashes to my patients, the children of parents desperate for hope and healing. I saw how this ritual gave them that hope and healing, the way their eyes closed, their heads bowed in gratitude, and their shoulders relaxed ever so slightly. I remember going into the room of a patient I’d been following for months, a five-year-old girl with leukemia, and feeling both a kind of dread and a strange, unexplainable grace as I marked her and her parents’ foreheads. It meant something—it meant everything, perhaps—that I, too, wore a cross of ash on my forehead as I marked theirs. I was not pronouncing their deaths like some kind of prophet or angel of death; I was joining them, and inviting them to join me, in the knowledge of our universal mortality. In a sense, I was saying, “We are all patients here. We are all going to die. We are all called to join Christ in his death and his resurrection.” Perhaps providing ashes on this holiday was the deepest embodiment of solidarity with sick and dying people that I possessed.

After that experience, I came to see administering ashes to staff differently as well. Rather than feeling like I was dooming the work of the doctors and nurses who came to me with their heads bowed—essentially telling them that no matter how hard they tried or how advanced medical science became, they would ultimately fail—I was relieving them of a burden too great to carry, one that medical providers are too often asked to hold. They are not, in fact, in the business of saving lives—not in the sense of endlessly deferring death, curing people of the disease of mortality.

Human beings cannot be cured of our mortal diagnosis; death will come for each of us at one time or another, no matter how healthy our lifestyles and how frequent our scans and checkups. Perhaps by administering ashes to these doctors and nurses, I was helping remind them of that truth, freeing them even a little from the enormous pressure that they carry. Their jobs are not to cure but to care, not to fix but to heal, until the inevitable and universal healing of our bodies comes in the form of the death we will all one day face.

According to the United States Centers for Medicare and Medicaid Services, physician and clinical services expenditures in 2021 totaled $864.6 billion. An estimated $4.3 trillion was spent on health care that year in the US, $1.3 trillion of it on hospital care. In 2017, a team of Australian health-care researchers reported that so-called futility disputes in that country—wherein patients with an extremely low or zero chance of recovery, such as those who are legally brain-dead, are kept on life-sustaining interventions in the hospital—cost $153.1 million per year.

The story behind these numbers is a complex one, and no single narrative can be extrapolated from it. Nevertheless, it seems clear that Western culture is too often a death-denying culture, one where the inevitable fact of our mortality stands in stark contrast to the billions of dollars spent each year not only on medically futile treatment but also on the many products aimed at denying death, halting the aging process, and alleviating the sting of acknowledging that we are mortal creatures. We know that we will die, but like children who cover their ears to ignore their parents’ commands, we block out the noise of our impending death with any device or entertainment we can find.

Distracting ourselves from death is not necessarily a bad thing. Human beings weren’t designed to dwell endlessly on our mortality, to read constant stories of violence and death on the news and ruminate over the inevitability that our loved ones will one day leave us. Jesus himself, even as he set his face toward Jerusalem and the violent death he knew would come, broke bread with his disciples, debated with his neighbors, and spent hours reclining after supper with friends and strangers.

Nevertheless, there is a difference between appropriate distraction and endless denial, and research has shown that such denial has enormous costs, from medical expenditures to the quality and length of one’s life (Atul Gawande makes this argument powerfully in Being Mortal). For my part, I have come to see Ash Wednesday, with its blunt liturgy and embodied rituals, as a profound antithesis, perhaps even a kind of antidote, to the particularly American denial of death. I now see the hospital setting as a uniquely appropriate stage for the drama of ashes, and its actors—the patients, families, and staff—as the people who have the most to teach us about how to live well as mortal beings, which is above all a question of how to die well.

The dramatization of death in the hospital that happens every year at the start of Lent leaves no room for escape, whether one wears a cross of ashes or shares a room with one who does, whether one is receiving a diagnosis or delivering one. We all bear witness with our bodies to the truth of our finitude, and for one day every year, perhaps we can help heal one another of our tendency to forget. There can be a grace to remembrance, after all. We remember that we are dust and that we will return to dust, and by remembering, we invite ourselves and one another to learn how to live in this fatal time between.

Complete Article HERE!

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!