“I’m not afraid of dying…

But I’m not ready to give in yet”

Lisa Brassington spoke with us in October as she was receiving support from Marie Curie Hospice, Bradford. Here she talks about how the kindness of Marie Curie staff made all the difference to her wellbeing.

By Lisa Brassington

I was diagnosed with a brain tumour in 2011. I’ve had years of radiotherapy and chemotherapy, but I’m on the very last chemo now. After that, there are no more treatment options. The tumour has started to spread to my temporal lobe, so it’s affecting different areas of my body and I’m paralysed down one side. I now need a lot of support.

I used to go to the gym three times a week and I loved food and cooking. I love reading and history. I fostered and rescued Bassett hounds. I had a Bassett hound called Ralph who I walked daily, but I had to give him up. A fantastic rescue charity found him a beautiful home and they keep me updated on his progress. I’ll never be able to have another dog. That breaks my heart.

Before coming to Marie Curie Hospice, Bradford, I’d been stuck in my bedroom at home for over eight months. My husband and I had been looking for care that whole time and couldn’t find anywhere that could support my needs. I felt so unsafe and frightened. Eventually, we found the hospice, and now I feel so safe, cared for, and even loved.

Nothing better than a hug

The Marie Curie Hospice in Bradford is fantastic and it had such an impact on my outlook. It’s not just the unbelievable care they give, it’s their kindness as well. I’ve never experienced kindness like it here, and I’ll never forget that. The staff are always smiling, and I get hugs and lots of care and attention. There’s nothing more important to me than a hug.

Before I arrived, I hadn’t eaten for a long time, so I had no energy, but the food here is delicious and the nurses encourage me to eat. Now everybody is saying I’ve got colour in my cheeks – it’s amazing.

The nurses offered to take my bed outside

There’s a lovely bath here that I can use, and I have a beautiful view of the garden outside of my room, I can watch the squirrels and birds feeding on the bird table. The nurses even offered to take my hospice bed outside if I wanted them to. Because of my condition, I wake up and I don’t know what day it is. I’ve been FaceTiming friends and family thinking it was the evening, but it’s actually been the morning. The nurses write down on a board what day it is and who is supporting me, which is so simple but so helpful for me.

When I first arrived, I told the staff that I love dark, West Indian rum. They told me I can have some here, and so I have my little rum nightcap, which is lovely. Nothing is off limits.
— Lisa

The healthcare assistants and nurses always find time to come and charge my electrical devices, which keep me in touch with family and friends. They’re constantly busy helping people, I can hear their buzzers going off all the time calling them into different rooms, but they still find time to come and charge my things for me and spend some time with me.

A sense of achievement

The hospice has got a fantastic physiotherapist team who have helped me to use the gym. I’ve even taken four steps, which is amazing. It’s not just the sense of achievement for me, it’s the feedback the team gives. I constantly get praised and encouraged. I never realised how important encouragement was until I came here. They have given me some exercises, and I do what I can to try to get my body working.

We’re all dying… I’m one of them

I’ve had a fantastic life, I’ve done everything I’ve wanted to do, I’ve been everywhere I wanted to go. I’m now doing my bucket list. I’ve jumped out of aeroplanes, I’ve gone down to the Spinnaker Tower, I just love doing something different. I’d love to go on a zip-wire, in fact I had a joke with the team here about the hoist in my room!

It was frightening when I first heard the word “hospice” because I just thought of dying people. There’s nothing wrong with dying people, we’re all dying, but it scared me to realise that I’m actually one of them. Now, I’m not afraid of dying. In fact, sometimes, I think it’s going to be a release. But, I’ve always been a fighter and I’m not ready to give in yet.

Complete Article HERE!

A cancer patient had decided how to die.

— Here’s what I learned from her.

For those with a terminal diagnosis, it’s getting easier to control death, but the process remains complex

By

I first learned about “medical aid in dying” last spring when my sister, Julie, who suffered from advanced ovarian cancer, chose to end her life — in accordance with New Jersey law — after all realistic treatments had been exhausted and the pain medicines prescribed could no longer alleviate her suffering. At that time I didn’t know anyone else who had taken this step. While Julie’s hospice social worker provided answers to our questions, there was much I didn’t know about medical aid in dying at the time she died at age 61, much that I wish I’d understood better.

After Julie’s death, Lynda Shannon Bluestein, 76, became one of my teachers. The married mother of two also suffered from late-stage ovarian — and fallopian — cancer.

In a series of conversations last fall Bluestein told me she had wanted to plan for medical aid in dying when her condition worsened, but medical aid in dying, or MAID, is not legal in her home state of Connecticut. However, it was legal in nearby Vermont, but barred to nonresidents. Last year Bluestein sued the state to eliminate the residency requirement, which put her on front pages throughout New England.

Last March, when her chemotherapy regimen become too much to bear, she stopped treatment and began hospice care. By May she’d won her court case and the right to utilize Vermont’s medical aid in dying procedures

Like others who want to use life-ending medications, Bluestein had to follow a carefully prescribed process, which begins with a terminal diagnosis. Following Vermont’s MAID law, known as Act 39, Bluestein made two verbal requests to her attending doctor, at least 15 days apart, then made a written request signed by two witnesses who were 18 or older.

As she told me, “My two witnesses had no interest in my estate and no influence on my life [and] they weren’t related to me in any way.” (This ended up later sparking a journalism controversy when it turned out one of the witnesses was a columnist from the Boston Globe, who had been writing about Bluestein.) As a final step, a second physician reconfirmed that she met all the qualifying criteria.

By October, when we first spoke, Bluestein had met all the requirements. And so Diana Barnard, a Vermont family medicine doctor who is board certified in hospice and palliative care, called in the prescription for the mix of sedatives and barbiturates to the one pharmacy in the state that dispenses them. They would be held there until Bluestein needed them and would cost her $700 out of pocket, since Medicare, her insurance provider, does not provide coverage.

I spoke with Barnard about what happens during the procedure. “It’s harder to hasten a death than you might imagine,” she said. Five powerful medications are currently used, including diazepam, digoxin, morphine sulfate, amitriptyline, and phenobarbital. Death usually comes within 90 to 120 minutes but can take longer, she explained.

Bluestein completely understood what would happen after she swallowed the lethal mix of medicines. When we last spoke by phone, she told me she worried that if she waited too long, she’d be unable to ingest the drugs or would throw them up. When it became clear over the year end holidays that her health was deteriorating rapidly, she chose her date.

On Jan. 3, she and husband, Paul, drove to a private hospice facility that provides “a safe and caring space” for patients to end their lives.

Barnard explained that when a patient is ready to take the meds, they, a relative or friend would mix the drugs with water or apple juice. It’s crucial to imbibe the entire potion within two minutes for the greatest efficacy, said Barnard. Within a couple of minutes, patients lose consciousness, she said, and “appear to be unaware and not experiencing external stimuli,” with just the heart and lungs still working. Then comes the waiting for the end.

The 2022 Oregon Death With Dignity annual summary reported rare complications such as difficulty swallowing and regurgitation, but Barnard said there are precautions that can prevent most of them. (Oregon is one of 10 states plus the District of Columbia that now allow MAID.)

For instance, Barnard makes sure her patients can swallow effectively and can drink the whole mixture at once (some people practice with a placebo or view a video enactment of how to take these drugs at bedside).

On the morning of Jan. 4, now in Vermont, Bluestein and her husband Paul got up early, he said, and after the rest of the family arrived, he gave her the premedication (which makes the patient calm and drowsy, though not too drowsy to take the next step). After 30 minutes, the hospice owner came in to mix up the life-ending cocktail. He asked her if she was ready, and according to Paul she replied, “I’m so happy I don’t have to suffer anymore.” She drank it all — quickly.

Bluestein was unconscious within five minutes, her husband said. “She looked like she had fallen asleep peacefully. … A lot of the pain that was in her face went away, and I was grateful.” She was pronounced dead by a hospice nurse after just 25 minutes.

A few weeks after Bluestein’s death, I asked Paul Bluestein about the pain she had endured. He replied in a text: “There are some things in life no one should have to see and one of them is watching someone you love in pain.” It was “intolerable” and “undescribable.”

During my last phone call with Bluestein, she made a point to say that making her plan “was extraordinarily difficult. You really have to want to do this a lot, have a fair amount of money, a lot of flexibility, and be very well connected to accomplish this.”

I understood exactly what she meant, as the same had been true for my sister, who, while suffering, had to arrange this last medical procedure.

For critics who fear that MAID could make it too easy for someone to take their own life, or to pressure someone else to take theirs, I offer Bluestein’s words, along with my sister’s experience.

It’s not an easy process, and requires deliberation and intent, and the sign-off from others. But it offers an end to much pain and suffering, and that is a gift to those like my sister and Lynda Bluestein.

Complete Article HERE!

Demand for death doulas has soared.

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

By Stacey Colino

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Complete Article HERE!

A Compassionate Journey

— The Transition from Palliative Care to Hospice

By Mazhar Abbas

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

Understanding the Transition: From Palliative Care to Hospice

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

Key Indicators for Hospice Care

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

Building a Supportive Community

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

Complete Article HERE!

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!

Should treatment for severe mental illness include medical assistance in dying?

By Anand Kumar and Sally Weinstein

Canada is on the threshold of enacting a law that would make medical assistance in dying (MAiD) accessible to people whose only medical condition is mental illness. If this were to pass, Canada would be one of only a handful of countries to extend that process for patients with serious mental illness.

It will apply to conditions that are primarily within the domain of psychiatry like depression and personality disorders. Political leaders have accused the Trudeau government of promoting a “culture of death;” others see this as a sign of gross underfunding of high demand mental health services.

In the United States, Oregon was the first state to enact the Death With Dignity Act, in 1997. The measure allowed terminally ill adults to end their lives by voluntarily self-administering lethal doses of medication prescribed by a physician for that purpose, with key caveats that included a physician’s diagnosis of terminal illness leading to death within six months. Since then, the District of Columbia and nine additional states have enacted laws that facilitate medication assisted death along the lines of the Oregon model.

Societal expectations regarding MAiD evolved over time. Several European countries have broadened the scope beyond terminal illness and imminent death to include suffering, functional decline and unbearable circumstances with no prospect of improving with treatment, thereby incorporating quality of life metrics into the process.

In a potentially dangerous expansion, countries including Switzerland, the Netherlands, Belgium and Luxembourg currently permit medical assistance in dying for patients characterized as having severe and persistent mental illness (SPMI) — defined as conditions resistant to evidence-based treatments — provided they meet additional criteria that include intolerable suffering with preserved decision-making capacity. By expanding into the realm of mental illness, we change the fundamental nature of the discussion.

Serious mental disorders are in essence brain disorders that are influenced by psychosocial factors. Unlike neurologic diseases, mental disorders cannot be localized to specific regions of the brain. Neuroimaging studies of patients diagnosed with SPMI, including bipolar disorder, the schizophrenia spectrum, anorexia, and post-traumatic disorder, for example, demonstrate that multiple brain regions are involved in the development of these illnesses. These disorders are mediated by impaired brain circuits — interconnected brain regions — rather than any specific part of the brain. The region most consistently involved in these circuits is the prefrontal cortex, which mediates executive functions.

Executive functions include judgment, abstract thinking, planning, integrating information from all brain regions and insight. These domains are therefore compromised in patients with SPMI, with important downstream behavioral consequences that include impaired insight into the nature of their illness and loss of the ability to objectively consider the pros and cons of intervention.

This is not to suggest that all patients with SPMI have minimal insight or are incapable of making rational decisions about their health care. Far from it. But it must be acknowledged that not all diseases, not even all brain disorders, are the same, and some of them do adversely impact cognitive domains germane to consequential decision-making.

There are effective treatments, both pharmacological and psychotherapeutic, that can reduce the burden of disease and improve the quality of life for patients with mental illness. Some of them require long treatment trials using traditional approaches or with newer neuromodulation techniques, such as transcranial magnetic stimulation.

A major compounding factor for patients with SPMI is the lack of adequate access to psychiatric care. Insurance companies frequently use a ‘business model’ approach that maximizes profit; for those with insurance, especially publicly funded insurance that is increasingly privatized, payment is often denied or limited. Denial of care exacerbates the challenges patients face as they navigate our health care system and potentiates the desire for an “exit plan.” Like the current debate in Canada, adequate mental health services and access to care will serve as mitigating factors favoring life in a subgroup of patients.

The notion that there is a right dose and combination of medications for all patients that will eventually result in symptom remission is more folklore than science. We must be intellectually honest and acknowledge that not all forms of SPMI are curable with appropriate therapy and that some patients remain refractory to treatment even after repeated attempts. Patients may also be overwhelmed by long medication trials and experience hopelessness about clinical remission, which is difficult to disentangle from the very symptoms of these illnesses. Perseverance is often a long game in clinical medicine.

An option for this group would be palliative psychiatry. Palliative medicine — that is, the absence of active medical interventions while providing basic sustenance and support — is more widely appreciated in cases of cancer and other near terminal illnesses where the patient makes an informed decision that quality of life, brief as it may be, is more important than measures to extend life, especially when they cause undue discomfort. Palliative approaches in psychiatry are conceptually comparable and include accepting that severe mental illness can be incurable, avoiding direct treatments with challenging side effects and questionable impact, and offering a support system that helps patients live impactful lives until death.

The American Medical Association’s Code of Ethics maintains that assisting in death violates a fundamental code for medical practitioners. The American Psychiatric Association adopted the same position as the AMA in 2016, stating “a psychiatrist should not prescribe or administer any intervention to a non-terminally ill person for the purpose of causing deaths. Suicide prevention is the bedrock of mental health care throughout the country.”

The debate is clearly a difficult one, fraught with emotions; it needs to incorporate not only new scientific information but also the cultural values and principles of the society in which we live. The relationship between patients with mental illness and the practice of medical assistance in dying is a slippery slope that is likely to get even more slippery over time. We will require great caution and a thoughtful national debate as we move forward.

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