‘The hardest and most beautiful conversation I’ve ever had’

— how end-of-life storytelling on TikTok helps us process death

By and

In a recently viral TikTok series, creator Ali Tate Cutler spends time with her terminally ill grandma who has made the choice to end her life through euthanasia.

While sharing start-of-life stories – such as ultrasound pictures or childhood milestones – is commonplace, posting end-of-life “journeys” online has users conflicted.

Such stories raise questions of autonomy, vulnerability and privacy, but are ultimately useful in changing how we talk about preparing for death.

@alitatecutler Replying to @Matthew This was the hardest and most beautiful conversation ive ever had. Healing for both parties. I had resistance to Euthanasia before this, but after being with her and hearing her, I no longer do. ❤️ #euthanasia #finalfarewell #ondying ♬ multiverse – Maya Manuela

Dying, virally

In Cutler’s series of videos, they show off their outfits before their “last lunch” together. Cutler’s grandma “Bubbie” gives life advice, and they talk through their thoughts and feelings about the euthanasia process.

Cutler’s videos are divisive. Many commenters criticise the attention gained through this subject, commenting, “Why would you publicise this? So wrong.”

However, some recognise it as an important story to tell and reply with their own stories about loved ones, showing kindness to Cutler’s family. Some recent comments have said:

This needs to be regular practice. Thank you for sharing your story.

It’s a blessing to be privy to conversations like this.

Sending her love on her next adventure. Safe travels to a beautiful soul.

It’s telling that many commenters thank Cutler and mention being “privy” to a usually private moment; we hear far fewer end-of-life stories than start-of-life stories.

Talking about death and dying

As scholars who research health, death and grief, we know there can be stigma and silence around end-of-life stories, despite an underlying obsession with death which pervades our media and social circles.

Experts in the field, such as those working in palliative care, call for more open conversations and stories about dying. They argue that not doing so is hindering happier deaths.

Mentioning death and happiness in the same breath may seem like an oxymoron. It’s natural that death and dying bring feelings of worry, fear, grief and regret. Those who talk about death and dying publicly (as we can attest as researchers in these fields) are often labelled grim, maudlin and even “clout-chasing”.

These reactions are understandable – we are biologically and socially conditioned to fear death. Our brains “shield” us from the reality of death, leading us to imagine it as something which happens to others rather than ourselves.

The “other people” we often imagine dying are elderly people. They can face infantilisation and assumptions that they are forgetful or incapable of making choices and speaking for themselves. Maturity of age, experience, autonomy and storytelling capabilities are overlooked.

Commenters assume Cutler is milking her grandma’s death for “clout” rather than enabling her grandma to tell stories which are important.

Cause to be cautious

Concerns of safety and vulnerability are legitimate and, of course, not all those at the end of their lives can tell their own stories. As life narrative theorist Paul John Eakin states, the breakdown of adult life and memory brings us “face to face with the end of an identity’s story”.

However, assuming that all elderly or dying people are beyond constructing stories of their identities or lives is folly. We must share end-of-life stories – safely, collaboratively – or risk oversimplifying the complexity of dying and denying the autonomy of dying people to share their feelings.

Out of pages and into our screens

End-of-life storytelling isn’t new, autothanatography – writing about one’s own imminent death – is an established literary genre.

This unique genre not only helps us process death (our own or a loved one’s), but also normalises anticipatory grief (grieving before the fact). Australian authors such as Cory Taylor and Georgia Blain have penned their own deaths.

In Dying: a memoir, Taylor writes:

I am making a shape for my death, so that I, and others, can see it clearly. And I’m making dying bearable for myself.

Similarly, at the end of Blain’s memoir, The Museum of Words: a memoir of language, writing and mortality, Blain acknowledges the power of having written her own life and death, stating,

This miniature is my life in words, and I have been so grateful for every minute of it.

As writers and creators like Cutler demonstrate, the end-of-life stage can be difficult and heartbreaking, but is also a time to reflect. Autothanatological stories, whether written or digital, are a chance to “shape” death and to contemplate the past and the future at once.

The platform is the message

Backlash aimed at Cutler may be due to her platform of choice. TikTok can be denounced as an app for young, vain people creating dance videos and “thirst traps”.

But content about dying is in demand, as evidenced by popular sub-categories “DeathTok” and “GriefTok”. The juxtaposition between lighthearted posts and stories about dying on the “video dance app” can be an adjustment.

Cutler, a Victoria Secret model, posts both kinds of content concurrently. Some users may find this jarring but it demonstrates that loss is an integrated part of life, not something separate. TikTok and similar sites are ripe for developing such nuanced conversations and even cultural practices around death.

Sites like TikTok create a unique space for end-of-life narratives to reach vast audiences through visual, auditory and algorithmic timelines, suggesting content, and encouraging engagement. Users interact with one another, and explore the complexity and inherent contradictions in reflecting on a life while preparing to lose the person who lived it.

As Cutler responds to a commentor, “This was the hardest and most beautiful conversation I’ve ever had”.

These narratives are moving rapidly from the pages of memoir to the instant accessibility of our mobile phones and we must make conscious efforts to be open to diverse stories about dying.

If we interrogate how we feel when we encounter challenging or surprising end-of-life stories, we can broaden the ways we think and talk about dying, and, indeed, even celebrate happy moments among the sad.

Complete Article HERE!

‘Dying is not a failure.’

— Why and how to prepare for death.

Author Michael Doring Connelly sees the care of elderly people as the biggest problem in healthcare.

By Jessica Hall

A new book examines death and dying in modern America.

After several decades of working in the healthcare industry, Michael Doring Connelly saw how the the insurance industry and the medical industry are often at odds with the realities of life and death.

Connelly served as chief executive of Mercy Health, one of the nation’s largest health systems, from 1994 to 2017 and previously served as an executive with the Daughters of Charity National Health System (now the Ascension Health System) and has experience with healthcare systems in Germany, the United Kingdom, Denmark, Sweden, and Spain.

Connelly spent five years writing “The Journey’s End: An Investigation into Death and Dying in Modern America,” published by Rowman & Littlefield, to discuss ways to reform healthcare in America, educate and empower consumers to advocate for better care around dying and explain how more care doesn’t equal better care.

MarketWatch: Why did you write this book?

Michael Doring Connelly: I spent a lifetime in healthcare trying to reform things and didn’t have much success. With the book, I tried to target what to improve and the care of elderly people is the biggest problem in healthcare.

MW: What’s the biggest mistake our society makes around death and dying?

Connelly: It’s a confluence of forces. Everyone is afraid to die. The healthcare systems sees dying as a failure. But if you’re in old age, dying is not a failure. It’s a natural progression. People will say “Do everything possible to save Mom” and it’s a terrible thing–it puts the patient through hell. Healthcare providers feel compelled to do this. The payment system encourages it. To do everything possible today can be a disservice.

MW: If you had the power to control the circumstance of your death, how would you want to die?

Connelly: I would like to die at home with my family. Today, the majority of people die in institutions and horrifically, in ICUs (intensive care units). If they’re dying, they shouldn’t be in the ICU. It’s really abusing the patient. But people cry “Do everything possible” because they don’t want to lose their mother. I don’t want that.

MW: In the book, you urge older adults to develop a ‘death literacy.’ What does that mean?

Connelly: The Lancet published a project on death and dying. The research, conducted by a worldwide commission of experts, suggested that we need to regain our appreciation for the value of death. Death literacy–it’s knowing what to expect in old age. It’s the knowledge and skills that old people need to navigate aging and dying. People don’t like to accept that they can’t physically and mentally do what you did before. Healthcare does a poor job at dying at home and the public is misinformed about hospice. If you get a terminal diagnosis, get an evaluation from a palliative healthcare provider who looks at the whole picture. Hospice–by not treating you–actually results in you living longer and more comfortably than active treatment would. It’s a better option. It’s accepting trade off, accepting that you won’t live forever. Physicians are the lowest users of healthcare at the end of life because they understand–they don’t try to have everything done to them.

MW: How did COVID affect people’s views on death and dying?

Connelly: Clinicians generally aren’t interested in recommending palliative care or hospice. But during COVID, they more often made those referrals because the system was overloaded and palliative care and hospice made sense. During COVID, there was so much death that there was a temporary awareness. But generally there’s a fear of death–everyone wants a legacy, wants to be remembered for something. In the book, I talk about it being more important to understand your life than extend it.

MW: Is there a balancing act that allows you to strive to stay healthy as people live longer while also accepting the reality of a natural death?

Connelly: Try to stay active as possible for as long as possible. And then, education becomes a very powerful tool in this area. There was a study that showed patients videos of the procedures they were requesting. They weren’t understanding what they were really asking for. Once they saw what the procedures entailed, their views on what they wanted changed. Under the healthcare payment system, doctors aren’t paid to patients, help them prepare for what’s the come and educate them. That requires a lot of time and care and multiple conversations. It doesn’t really happen. There’s an obsession with coding in healthcare payment systems and talking and educating isn’t a payment code. That’s why concierge medicine is becoming so popular. Patient gain greater access and doctors have more time.

MW: What do you want to stay with readers after they’ve read your book?

Connelly: Prepare for dying. Make an informed choice. Educate yourself. People have false assumptions of what works. It’s your life and you need to prepare for the end of it. We all do a lot of stuff to prepare for a newborn: we buy all sorts of things, redo the house, read a lot of books and talk to everyone for advice. Dying is a similar experience. We have to prepare for it. The healthcare system isn’t helping you learn about dying. You, as the patient, need to ask for palliative care. If you’re referred to the ICU, or for a transplant, or a feeding tube–ask for a consult with a palliative care doctor first.

MW: What reform do you think we need in healthcare?

Connelly: An economic tsunami is coming at us. There’s a significant shift in the demographics of the U.S. We have will 78 million people on Medicare by 2030. I can’t believe we’re in denial about this economic force. We could stop spending unnecessary money on end of life procedures because it isn’t working. We’re dumping this burden on future generations in the form of debt financing. I spoke about 12 things to change healthcare. There’s the issue of hospice. A doctor needs to certify that you’ll die within six months. No doctor want to say that and tell a patient that. So, doctors don’t bring up hospice until the last seven to 12 days. We also need to expand home care days for hospice. There’s a limit on that and that makes no sense. Congress is too overwhelmed with all that’s facing mankind and getting re-elected to make changes. The insurance world is obsessed with proof. It’s difficult to prove that hospice will cost less. So, we need and want consumers to make these changes. It’s not going to come out of Congress or the healthcare system. We need a cultural change. Do you care about your kids and grandkids? Don’t burden them with the cost and complexities of dying.

This interview was edited for length and style.

Complete Article HERE!

Why was it so hard to bear witness to my father’s final days?

— A former ICU nurse and no stranger to death, I didn’t realize that the most meaningful way to ‘do something’ for my dad was to be present at his bedside, ‘doing’ nothing at all.

Bronze lovers adorn a tomb in Milan’s Monumental Cemetery.

By Sherrie Dulworth

Over the past 20 years, I have been present with four loved ones as they died of terminal illnesses in their homes. Before their deaths, I assisted with comfort care and busied myself helping with household chores. Busyness made me feel useful. Sometimes I talked or listened; other times, there was nothing to do except to sit together in silence, which was a challenge for me.

As a former ICU nurse, I was no stranger to death, but I was a stranger to understanding that some actions are more significant than “doing.” While many of the tasks were important, some even necessary, they were not what mattered most.

Instead, it was the seemingly simple act of being present, of bearing witness in the face of impending death, that was the most meaningful — and the most difficult — thing I did.

More people now choose to die at home in this country than in any other setting. It’s likely, then, that in the future, many of us will be present with someone who is dying. If they are not at home, we might be together in a hospital or nursing home. Yet our society offers little guidance on how we can best emotionally support someone who is dying. There is also scant advice on how best to support ourselves.

Might this be a good time to reflect on what we hope for others and for ourselves in the final phase of life? How do we want to show up? What will we want and need from our loved ones? I interviewed a variety of experts versed in good endings.

BJ Miller, a palliative care physician whose Ted Talk, “What really matters at the end of life,” has been viewed more than 16 million times, told me, “There is poignancy and power in just being present with someone, but our minds get in the way. Our minds tell us to go do things or to run away. I think we need to honor the power of just being, naming what a profound offering it is, and how difficult it is, to sit with suffering that you can’t change.”

This is not stoicism. Nor is it, as Miller said, “an exercise of the intellect. You could force yourself to sit still at the bedside, but will that register with the person in the bed if you aren’t present emotionally?”

For me, being there for others means I must face the vulnerability that impending loss provokes. I must counter my own instincts to freeze or flee. As empathy and vulnerability researcher and bestselling author Brené Brown says in her documentary, “The Call to Courage,” “Vulnerability is having the courage to show up when you can’t control the outcome.”

Like living, dying is sometimes a messy business. I hope to hold space for the dying with empathy and solidarity, showing up without judgment, regardless of what physical or emotional messiness might arise.

This may sound a bit overwhelming, but as the Rev. Paul Tesshin Silverman, a New York-based Zen Buddhist priest, told me, “Have the courage that your heart is big enough to be able to take in a whole rainbow of different feelings and emotions. It will only strengthen you and not destroy you. Allow yourself to be present, breathe, and allow whatever emotions to come out, so that you’re present.”

Silverman described being in Japan as a young monk in his 20s when a girl of about 14 in his village was dying of leukemia. “I went over every day to spend time with her. I felt like I had to get busy for her.” He learned that her dying wish was to go to a boy band concert, and he arranged for her to do that. “I was doing tons of stuff to make her last days happy,” he said. “When I think back on it, the most profound moment, which I wasn’t aware of at the time, was the last day I spent with her, sitting there and just holding her hand.”

Sometimes death comes quickly, but often it tarries, creating an emotional roller coaster for those who are present. When my father was dying from an aggressive brain tumor, he fluctuated between being semi-comatose and responsive for almost a week. In hindsight, I wish that I had allowed myself to stay mindfully present, instead of projecting into the future, engulfed by anticipatory grief.

“Sitting in the liminal space is difficult,” death doula Nicole Heidbreder told me. As a former labor and delivery nurse, Heidbreder has worked on both ends of life’s spectrum. She said, “I try to be present as a fellow mortal, watching others do what I will someday do. If I can be present with compassion, tenderness, and shared humanity, it lets them know they’re not alone.”

According to death doula Elizabeth Johnson, “It takes a kind of reverence to see what is unfolding in that space. It is a mystery to everyone including to the person who is dying. For me, the spiritual component is recognizing that there are equal parts of absolute grace and mystery as we physically unravel from our physical form.”

For his part, Miller said, “I think the sacredness comes from letting go of impulses to control or to fix. You’re not running away from the impulse; instead, you’re running toward some basic sense that life is bigger than you or me. It’s not ours to understand that there are forces at work that include us, but that are much bigger than us.”

One literal definition of the verb “bear” is to support the weight of or to sustain. In bearing witness to another person at the end of life, we support and honor them in their transition. The lesson that I’ve come to realize is that this is, in fact, doing something in the most real and important way possible.

Complete Article HERE!

Former Archbishop of Canterbury advocates for assisted suicide law

George Carey, the former Archbishop of Canterbury, leads a ceremony of prayer in the Crypt Chapel at his official residence in central London on Oct. 5, 2001.

By Anugrah Kumar

Lord George Carey, former Archbishop of Canterbury, has challenged the official stance of the Church of England on assisted suicide, urging the British government to set aside time for debate on the law governing assisted dying. A Christian group is warning that it would be “a very dangerous thing” to do, however.

Carey, who served as archbishop from 1991 to 2002, framed this issue as being “profoundly Christian,” asserting that it’s crucial to prevent individuals from suffering against their will, The Telegraph reported Monday.

The former archbishop diverged significantly from the position of the Anglican Church, ignoring its warnings that such legislation could pressurize vulnerable individuals, particularly among the half-million elderly people mistreated annually, to end their lives prematurely.

The Church of England has also cautioned that nations that have legalized assisted dying have experienced a “slippery slope,” with the process becoming progressively easier over time.

Carey has been calling for assisted dying since 2014, when he lent his support to a bill introduced in the House of Lords by Labour’s Lord Falconer. Although the bill did not pass, the issue has resurfaced as lawmakers on the health select committee are reconsidering assisted suicide and euthanasia.

The proposal includes an evaluation of safeguards needed to prevent coercion and the requirements for an individual to consent to the termination of their life.

In his submission to the inquiry, Carey emphasized his belief that one of the many Christian values is to ensure no one endures suffering against their will. He stressed that assisted dying should only be an option for those expressing a clear, persistent wish for it and suggested it was an “act of great generosity, kindness and human love” to aid those wanting to end their suffering.

Carey also contended there is a need for laws reflecting the “compassionate society” we live in, encouraging the government to gather evidence from a variety of sources and ensure an appropriate debate to facilitate law change.

He pointed to evidence from Oregon, California, Australia and New Zealand, asserting that laws allowing choice over the manner of death, with adequate safeguards, can be enacted successfully.

However, the CofE’s submission contradicts his perspective, noting that evidence from the same regions indicated a “slippery slope in operation.” It contended that no systems could effectively rule out coercion in such scenarios.

The CofE has raised concerns over “improper psychiatric testing” in places like Oregon and the prevalence of “doctor shopping,” with patients looking for medical professionals willing to administer lethal drugs. It further warned about challenges to the original law, expanding the definition of assisted dying to include those with non-terminal but “grievous and irremediable” medical conditions.

In an op-ed, Christian Concern Communications Manager, Paul Huxley, reinforced the CofE’s position, asserting that legalizing assisted suicide would be “dangerous, unnecessary and wrong.”

He cited evidence from other jurisdictions where vulnerable people felt pressured into ending their lives prematurely, and highlighted the Christian perspective that views death as an enemy and noted that suffering is an opportunity to strengthen one’s faith in God.

“It would be a very dangerous thing to do. … Assisted suicide changes the way doctors think about how they care for people. They think, ‘oh well, we can offer you euthanasia’ rather than thinking about how can we look after this person…,” Huxley wrote. “I think it’s a very concerning message that we are sending to people.”

He pointed out that “the most dominant symbol of Christianity is the cross – a man dying,” and, therefore, “life and death are put right at the center of the Christian message (the Gospel) as Jesus died for our sins and was raised for our justification.”

Complete Article HERE!

What is medical aid in dying, when is it done and is it legal?

— Here’s an update on the end-of-life debate.

A 2020 Gallup poll showed 74% of Americans surveyed said doctors should be allowed to end the life of a patient with an incurable disease “by some painless means” if the patient and the patient’s family requests.

More states and countries are enacting laws to let terminally ill patients in great pain decide when to die

By Donna Apidone

In January, just a few days after the start of 2023, a woman walked into the Daytona Beach, Florida, hospital where her terminally ill husband was a patient and shot him. She said she intended to kill herself as well, but hospital staff stopped her before she could carry out the second part of her plan.

Ellen Gilland told police the shooting was by mutual consent, that she and her husband agreed that it was the best way for them to handle his decline in health. He was too weak to take his own life.

Only 10 states and the District of Columbia have laws that allow medical assistance in dying by making a lethal dose of medication available to adult patients who request one. The practice also is legal in Montana because of a court ruling.

Medically assisted deaths are illegal in all other states and U.S. territories, including Florida. No jurisdiction permits the use of firearms to end a human life.

Words matter

Medical aid in dying is not euthanasia. The latter term includes the act of one person killing another who is terminally ill or hopelessly injured and suffering great pain. Euthanasia is illegal throughout the United States. However, if the person who is dying self-administers, the act is not considered euthanasia.

In the U.S., terminology has evolved. The current acceptable wording is “medical aid in dying” or “medical assistance in dying” indicating that a medical professional will make a lethal dose of one or more drugs available to the patient but leave it to the patient to decide whether to take it. The terms are abbreviated as MAID.

The word “suicide” is not accurate, although is it sometimes incorrectly applied. Death certificates state a patient’s underlying illness as cause of death.

Although 22% of Americans have access to medical aid in dying, fewer than 1% of people in the 10 states and Washington, D.C., where this option is legal actually obtain the medication, and only two-thirds of them ultimately decide to take it, according to Compassion and Choices, a nonprofit group that advocates for end-of-life options including, but not limited to, medical aid in dying.

Where it is legal in the U.S.

In addition to reaching a consensus on the language describing medical aid in dying, the 11 jurisdictions that authorize the practice are consistent in their intent, said Kim Callinan, president and CEO of Compassion and Choices.

“Most of the laws across the states are very similar,” she said. “The eligibility criteria are the same. And the safeguards are the same.”

Geoff Sugerman, who served as campaign manager for Oregon’s Death with Dignity law, which was enacted in 2012, and works closely with the national organization called Death with Dignity, laid out the four cornerstones of the laws in in the 11 jurisdictions:

  • Patients must be adults with a terminal illness and a prognosis of six months or less to live.
  • Attending physicians must verify patients are acting voluntarily.
  • Patients must be able to make and communicate their decision to healthcare providers.
  • Patients must be able to self-administer (ingest) the medication.

Differences among laws

There are some differences in the laws. Where it is legal, a common waiting period for approval of medical assistance in dying is 15 days. Hawaii mandates 20 days. New Mexico and Oregon are less than 15 days. In California, a 2022 adjustment to the law reduced the time from 15 days to 48 hours.

Most medically assisted deaths are limited to residents of states that have legalized the procedure. However, the Vermont legislature in April passed a bill that would eliminate the residency requirement; Gov. Phil Scott has said he would sign it into law. Meanwhile, Oregon officials have said the state will not prosecute nonresident cases.

The number of states considering medically assisted death continues to grow. Minnesota and Florida have bills in their legislatures.

From the archives (June 2019): How ‘death with dignity’ laws allow terminally ill patients to take back control — sometimes at a price

Fine-tuning legislation

While some states debate new MAID laws, others are weighing changes to existing laws. As public opinion adjusts and data is collected, legislators in several states are considering amendments. Some details in the original laws may have “served as barriers to the patient,” Sugerman explained.

Changes to legislation may include the length of the waiting period and expanding the definition of “medical professional” to include Physician Assistants and Nurse Practitioners. Some states may remove their residency requirements so that patients can travel from other jurisdictions for the process.

Details and updates about state legislation are available through Compassion and Choices and Death with Dignity.

Healthcare systems

A patient’s first consideration of medical aid in dying may come in a conversation with a primary care physician or specialist when treatment options have been exhausted.

Dr. Nathan Fairman is a physician with UC Davis Health in California. He was selected to provide medical information to the state’s legislators as they prepared wording for the End of Life Option Act, enacted in 2015. Fairman explained how the process might go in his health system.

A UC Davis Health patient sees a primary care physician until a diagnosis necessitates care from a specialist. If treatment of a disease or condition is no longer beneficial, the specialist is likely to discuss end-of-life options with the patient.

Depending on the illness, medical aid in dying may be one of several options. Others may include palliative care and cessation of eating and drinking. Each option comes with its own set of considerations.

The patient makes the choice. A team is put in place to help the patient and doctors through the qualification process. “We employ navigators,” Fairman explained. These are two trained professionals who “make sure the patient has gone through all of the required steps — and there are a lot of them” — to qualify for medical aid in dying, if that is the choice.

“We were intentional about having a clinical social worker in this role,” he said. “It requires a high degree of advocacy and health system literacy. You need to have someone who is jumping through those hoops.”

Doctors may opt out

Doctors may disagree with the state law or their system’s policy. Professionals are not required to participate in aid in dying. Depending on personal beliefs, a doctor may refer a patient to a colleague in the same system.

In California, although referrals are allowed, they are not guaranteed. In the region served by UC Davis Health, most of the major health systems have policies for the process. The exception is Dignity Health, a Catholic healthcare system. A patient may have to change health systems to have access to aid in dying.

On the other side of the country, Providence St. Joseph Health is a Catholic healthcare system serving residents of Maine and Vermont, two states that have legalized medical aid in dying. The healthcare system has published its end-of-life policy. “PSJH considers intentionally hastening death to fall outside the scope of legitimate medical practice,” according to the document.

The PSJH policy acknowledges its patients may request a service it will not provide. “Providers and caregivers must not actively obstruct eligible patients from discussing, exploring or pursuing legal avenues to hastening death. Within the context of a therapeutic relationship, providers and caregivers should discuss with the patient why they may be inquiring about hastened death and what unmet needs there may be.”

Final exit network

A nonmedical end-of-life option is available through the Final Exit Network (FEN), a nonprofit organization based in Tallahassee, Florida, with about 20 “exit guides” who volunteer in all 50 states.

Wendell Stephenson lives in California and is a member of FEN’s board of directors. He said the organization is “devoted to providing information to people about how they can end their lives in a peaceful manner.”

FEN volunteers may be present at a death, but that is not required. Because physicians are not a part of the Final Exit Network process, medications are not used. Instead, FEN volunteers suggest using an inert gas and explain how to obtain and use it. Family members also receive guidance on observing the process but not helping, to avoid criminal charges.

Do patients measure up?

FEN has a medical evaluation committee consider applications from patients seeking to end their lives. The committee (composed of MDs and others with medical and mental health backgrounds) review applicants’ medical records with a couple of key considerations.

One of FEN’s rules is that applicants have conditions that “cannot be cured,” Stephenson said. They must have an intractable medical condition that seriously impairs quality of life. Most of these can be expected to shorten the applicant’s life, but death does not have to be imminent.

Another requirement is that applicants be physically able to manipulate the equipment that delivers the gas, Stephenson explained.

FEN does not provide the inert gas or related equipment, nor does it publicly discuss the content of the information they provide. For details, they refer to “Final Exit,” one of the books written by the organization’s founder, Derek Humphry.

Supporters and opponents

The Pew Charitable Trusts, a nonprofit research organization, issued a report summarizing the viewpoints of several of the world’s major spiritual groups regarding medical aid in dying. The report, published in 2012, provides more perspective from each religion than a simple “yea” or “nay.” Many faiths do not approve of MAID, a few allow for it, none endorse it. Some acknowledge the request for reduction of lifesaving techniques at the end of life.

In a Gallup poll in 2020, 74% of the 1,028 Americans surveyed said doctors should be allowed to end the life of a patient with an incurable disease “by some painless means” if the patient and the patient’s family requests it.

Activists are often family members of patients who have died painful deaths.

The Catholic Church has called MAID “morally impermissible.” Some Christian medical associations have also spoken out against medical aid in dying. The National Hospital and Palliative Care Organization is opposed, as is the American Association of People with Disabilities.

Will insurers cover it?

Will insurance cover medical aid in dying? “Sometimes,” Fairman said. “Many private insurances will cover it. MediCal [California’s version of Medicaid] will cover it for the state portion. Any federal insurance will not cover it.”

The Compassion and Choices website reports, “Regardless of whether a state has authorized medical aid in dying, insurance providers cover treatments that are deemed effective and proven, and not those considered unnecessary, experimental or below the standard of care.”

Countries outside the U.S. allow different end-of-life options. Callinan, CEO of Compassion and Choices, warns against comparisons “because the healthcare systems, the political systems, the economic systems, the cultures are entirely different.”

Canada passed its MAID law in 2016, covering residents eligible for Canadian healthcare. It has been updated several times. By 2024, a decision will be made regarding the inclusion of mental illness as a criterion.

Outside the U.S.

While euthanasia — medically assisted death performed by someone other than the patient — is illegal throughout the U.S., it is allowed in some other countries.

End-of-life options vary around the world. The practice is legal in Belgium, Luxembourg, Netherlands, Switzerland, Austria and Spain. Some processes resemble medical aid in dying and others are closer to euthanasia, though at the request of the patient.

Several Swiss organizations offer medical aid in dying to nonresidents. The oldest and best known is Dignitas, which has been featured in BBC and PBS documentaries. In addition to a membership fee, a patient pays a considerable sum for the end-of-life procedure.

Medical aid in dying is legal in New Zealand. In Australia, five of the six states either allow medical aid in dying or will by the end of 2023. Colombia allows the practice, while Chile, Uruguay and Argentina have introduced bills to decriminalize the procedure.

Several other countries have laws that allow patients to decline treatment and/or nourishment that would sustain life, according to World Population Review.

Complete Article HERE!

The parting gift from my dying friend was an extraordinary act of selfless compassion

— In the hospital room I lost it. I stood there awkwardly with wet eyes. And then something incredible happened

We are raised to be stoic in the presence of the dying, when our instinct is the opposite.’


The word that our old friend was about to die travelled as quickly as a Mallee scrub fire. He’d been medically evacuated home from overseas a week or so earlier. He was now in hospital with his family about him, not very responsive and unable to talk.

“You should get there quickly. He might only have a day or two.”

There was disbelief and shock. I’d last seen him across a cafe table in Glebe three months earlier where he was characteristically ebullient. He enthused about his plans overseas for the years ahead, and spoke of his love for his children and grandchildren.

He gave me four boxes of antique books.

“I don’t need stuff where I’m going,’’ he said. He meant overseas. His words now seem unintentionally prescient.

The sadness I felt when I heard of his terminal decline was largely about his now unrealised – and cruelly thwarted – plans. Also, I just couldn’t – still can’t – foresee a world without this man, one of the bravest, most forthright, irreverent, passionate and generous people I’ve known.

Last year in this space I wrote about the importance – and occasional fickleness – of “mateship’’ and male friendship. I wrote how “two of my most important friendships have been with men who are both 20 years older than me’’.

“Both are intensely creative and passionate, have done amazing things while continuing, as their 80s approach, to live compelling lives that have been marked by courage and iconoclasm, sensitivity, tragedy, devastating loss, success, disappointment and, not least, a desire to do good. They’ve gently guided me and been there (each with a sixth sense, almost, that told them I was troubled) when life has cut up rough.’’

This was one of the men I had referred to. He’d long been around for me as a mentor – on how to be genuine, how to be true to your beliefs and art, and especially on how to learn to not give a damn about the critics and the knockers. He’d been there to counsel me through the grief associated with my parents’ deaths. He’s the type of bloke who texts when your team wins – or loses – big. Who always asks after – even offers to mind – your dogs.

When serious illness struck my family a few years ago, never a week passed without him checking in. Urging me to hope. For hope and optimism were always his propellants. Publicly at least.

And so I drove out of Sydney on one of those glorious, crisp autumn mornings under a crystalline sky of the gentle blue you might find on a bolt of shirt cotton in the tailor’s window. It was an air-punch morning. One on which to celebrate life. And I was driving to a regional hospital to say goodbye to a dear friend who, although 77, was Peter Pan incarnate to me and so many others. I was counselling myself as I drove to keep it together. For him. For how much do the dying fear what’s next and become even more afraid when their anguish is reflected in our eyes and responses? We are raised to be stoic in their presence, when our instinct is the opposite.

It was on a day like this, 25 years earlier, we’d first met over a long lunch in Sydney where I’d come, as a newspaper reporter, to write a profile about him. We’d been true mates ever since. Although I do wonder at the equality of our friendship; he always seemed more there for me than I for him. Yes, we talked often about the tragic death of his adult son. But I could offer him nothing, then, because I had never experienced any such loss. I could not reciprocate the hope he’d always urged in me. For it was already hopeless. I could only lend a caring, passive ear to his pain. I don’t know how he survived that. Testimony to an old soldier’s resilience, perhaps.

And in the hospital, now, there he was in bed, diminutive now for such a robust man and wearing the pallor of imminent death. His beautiful children were about him, the room brimming with love. His eyes and his smile sparkled as they always had. He grinned as we held hands. There was time alone. I thanked him for it all. And yes, I lost it. I could do nothing but stand there awkwardly, with wet eyes, when his kids re-entered the room. I felt like an intruder.

And then something extraordinary happened.

Helped by his son, he stood on unsteady legs upon a mobility device to visit the bathroom. I gave him a stoic two-handed thumbs-up. He smiled and gestured for me to come forward. As we hugged in silence he patted me on the back as if to sooth my earlier evident distress.

It was an extraordinary act of selfless compassion, a perpetual gift if you like, from a mate who had already imparted so much to me about life and humanity. He was making sure I was OK.

He died a week later.

Complete Article HERE!

‘I have my life in my own hands’

— A filmmaker spent three years with Paralympian and triathlete Marieke Vervoort to explore her wish to die by euthanasia

By Amy Woodyatt

Throughout her storied career, triathlete and Paralympian Marieke Vervoort captured the imagination of her native Belgium and the wider world.

But it wasn’t just her stack of sporting achievements that drew attention.

Vervoort lived with a degenerative spinal and muscle condition and had long been vocal about how one day she wanted to – and would – end her life by euthanasia.

Euthanasia involves a physician administering a drug to end the life of a patient who is suffering, usually with a debilitating or life-limiting condition.

“Everyone is pushing me and asking me, ‘When are you going to die? Do you know already the date that you’re going to die?’” she told documentary maker Pola Rapaport, who last year directed the film “Addicted to Life” about Vervoort.

“I said, ‘F**k you.’ … You don’t know when you want to die. When the time comes, when I feel it’s enough, then I will decide.”

She was a Paralympic gold medalist at London 2012, winner of silver medals at Rio and holder of a European record for the T52 100 meters, but Vervoort’s condition caused her near-constant pain and made sleeping very difficult.

She received euthanasia approval in her native Belgium in 2008, but far from signaling the end of her life, Vervoort was very vocal about how the ability to control her own destiny empowered her to continue to compete at the highest level and make the most of her remaining days.

Documentary maker Rapaport, who encountered Vervoort’s story after reading a news report about her, says she was instantly captivated by the athlete and how the “paradoxical” permission to die “had given her a kind of liberation of spirit.”

“Her knowing that she could choose her date of dying and the conditions under which she would die, and whom she would have with her. … The fact that that had given her so much mental liberation and spiritual liberation, I thought, was a fantastic story,” Rapaport told CNN Sport.

Vervoort had been living with her illness, which caused paraplegia, since her teens, and as she got older, she became involved in wheelchair basketball, swimming and triathlons. By the time she applied for euthanasia, she had already considered and planned to die by suicide.

“I no longer have a fear of death,” she explained. “I see it as an operation, where you go to sleep and never wake up. For me, it’s something peaceful. I don’t want to suffer when I’m dying … When it becomes too much for me to handle then I have my life in my own hands.”

Rapaport added: “She told us on day one, ‘The time is not here for me to call my doctor and tell him that I want to go now. But when the bad days outweigh the good days, that’s when I will do it.’”

Ultimately, that moment ended up coming over a decade after she was granted the approval for the procedure.

A love for life

Vervoort won gold in the T52 100m wheelchair race and silver in the 200m race at the London 2012 Paralympics, then claimed two further medals at Rio 2016.

Apart from her athletic endeavors and achievements, Vervoort made sure to live to the fullest toward the end of her life, making time for wheelchair bungee jumps, Lamborghini racing with driver Niels Lagrange, trips abroad and time with her close friends.

Vervoort’s continued enthusiasm for living in spite of her suffering was the result of being granted the choice to do what she wanted with her life, Rapaport said.

“The most important central theme of the film is that when a person has control over their personal body, mind, spirit, that it gives them freedom to live. And in this case, having control over decision-making about the end of your life,” Rapaport explained.

“She had incredible highs and really amazing successes that still astonish me and I think astonished her fans and the Belgian public and the royal family. And she also had horrendous lows,” Rapaport said.

Vervoort was named a Grand Officer of the Order of the Crown by Belgium’s King Philippe, whom she met in a ceremony in 2013, along with Queen Mathilde.

By the end of her life, seizures and excruciating pain had become almost daily for Vervoort, which also understandably contributed to a decline in her athletic ability.

The day Rapaport and her husband, Wolfgang Held, who is also a filmmaker, met Vervoort, the athlete experienced a seizure, which at the time led them to believe she was dying in front of them.

“It was grueling to watch. It was very upsetting to watch when Marieke would go into the seizures, and over the three years that we shot with her on and off, it happened more and more frequently,” Rapaport added.

“I didn’t want it to be a film only about this marvelous Paralympic athlete who triumphs in the face of incredible odds. I really wanted the audience to get the sense of what this young woman goes through on a regular basis,” she explained.

An ongoing conversation

In 2019, after a small party with friends and family, Vervoort died through euthanasia at her home in Diest, Belgium, at the age of 40 – and although it has now been some four years since her passing, conversations around euthanasia are still as relevant now as they were then.

Although a few European countries including Belgium, Luxembourg, the Netherlands and, recently, Portugal allow euthanasia under certain conditions, euthanasia and assisted suicide are not legal in most countries, and assisting a suicide, or providing a means to die by suicide, is punishable with jail time in many places.

The Vatican condemned euthanasia in its strongest language yet in 2020, calling it an “act of homicide” that can never be justified.

Meanwhile, debates resurface in Belgium over patients who have died by euthanasia on the grounds of psychiatric reasons.

Last year, the European Court of Human Rights ruled that Belgium didn’t violate the rights of a person with depression when it accepted her decision to go ahead with a euthanasia procedure after her son, with support from Christian advocacy organization ADF International, mounted a court case that was highly publicized in the country.

In Belgium, 2,966 people died by euthanasia in 2022, comprising 2.5% of all deaths in the country that year, according to the country’s Federal Commission for the Control and Evaluation of Euthanasia.

Of euthanasia performed in 2022, nearly 90% of patients were over the age of 60, with almost 60% of the 2,966 who died having cancer, about 20% affected by multiple diseases and about 9% affected by nervous system diseases.

Rapaport told CNN Sport she wanted Vervoort’s experience – shown through shots of the athlete grimacing and crying out in pain, as well as footage of her seizures – to help people to understand why people would decide to die by euthanasia.

“It’s not an advocacy film. It doesn’t have any statistics. There’s no politicking in it. I felt that the more you can enter into this young woman’s experience, the more you will understand the arguments for assisted dying, no matter what country you’re in,” Rapaport added.

“Her story does expand the conversation, and you see what a person goes through and her case: how [the right to die as she wanted] improved her life immeasurably.

“That’s what I thought was so beautiful about her story, that this permission made her life so much better in the meantime, and it really allowed her to live to the maximum. And that was just unbelievably inspiring,” she added.

Rapaport hopes the film will keep conversations around death ongoing.

“It’s something generally people don’t want to talk about until they absolutely have to; even then, they don’t want to talk about it. But having control over that really can transform the rest of a person’s life and that is all we have.

“That’s all we have because we’re all going there,” Rapaport added. “It’s just a matter of when, how and how it will be handled.”