Month: May 2023

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‘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.”

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What should I do on the death anniversary?

— More are asking as US mass killings rise

Damone Presley sits next to a memorial area in his house for his daughter, Nitosha, Thursday, May 4, 2023, in St. Paul, Minn. Nitosha and her three friends were found shot to death inside an SUV in the middle of a Wisconsin cornfield, though they were killed in St. Paul, Minnesota.

By TRISHA AHMED

On a September day that he knew would be hard, 51-year-old Damone Presley marked the occasion with barbecue and balloons.

He was commemorating the one-year anniversary of the day in 2021 that his daughter and her three friends were fatally shot in Minnesota by a man who left their bodies in an abandoned SUV in a Wisconsin cornfield. Presley gathered 50 friends to celebrate the life of his daughter, Nitosha Flug-Presley, who was 30 when she died. He went big on the anniversary because he felt sure that’s what his daughter would have wanted.

“She would always do stuff big,” Presley told The Associated Press.

There have been 553 mass killings in the United States since 2006, and at least 2,880 people have died, according to a database maintained by The Associated Press and USA Today in partnership with Northeastern University. Those include killings where four or more died, not including the assailant, within a 24-hour period. So far in 2023, the nation has witnessed the highest number on record of mass killings and deaths to this point in a single year.

As the number of people who die in mass killings in the U.S. continues to rise, thousands more are left to handle the trauma of losing someone they love to a senseless act of violence. They struggle with a special kind of grief, haunted both by the loss and by how it happened.

One of the hardest days they confront each year is the anniversary of the killing.

This Wednesday, families in Uvalde, Texas, will have to face that one-year anniversary — transporting them back to the day when a gunman entered Robb Elementary School and fatally shot 19 children and two teachers as they gathered to celebrate the end of the school year. And last week, families of 10 people in Buffalo, New York, crossed the one-year mark from the day a white supremacist shot and killed them in a supermarket.

People cope with these anniversaries in different ways. Some throw a party to get through the pain. Others prefer to be completely alone. Many fall somewhere in the middle, adopting little rituals to help get them through the day.

But they all grapple with the same question, sometimes after many years have passed:

What do I do with myself on the date that changed everything?

___

On the same day Presley gathered with friends and family at his home, Angela Sturm — whose children, Jasmine Sturm and Matthew Pettus, were killed in the same attack — chose to spend the day alone.

“I turn down invites to ‘celebrate’ because it’s not a celebration to me,” she said.

Instead, she honors her children privately by looking at their photos and remembering how their life together used to be. She writes, cries and practices self-care by reading a good book or taking a hot bath. She hopes people will understand that she wants to be alone, and that they shouldn’t worry or be upset if she turns down invitations or doesn’t respond to texts.

Everyone deals with grief differently, said Jeffrey Shahidullah, a pediatric psychologist at UT-Austin Dell Children’s Medical Center.

Shahidullah was part of a team that stayed in Uvalde for months after the shooting to operate a crisis walk-in clinic for first responders, community members, family and friends of victims.

In the short and long term, mass shootings can traumatize entire communities, Shahidullah said. That can lead people — even those who didn’t know the victims personally — to avoid situations that remind them of the event, feel constantly unsafe and experience intrusive flashbacks to when they first heard about the killing.

“A lot of these symptoms could be exacerbated or worsened around the time of these anniversaries,” Shahidullah said. “Over time, those symptoms do tend to subside. But everyone has their own timeline.”

___

By cruel coincidence, the first anniversary of the Buffalo supermarket shooting fell on Mother’s Day. That made things especially hard for Wayne Jones, whose mother, Celestine Chaney, was among the 10 people killed by a white supremacist that day.

Jones said some friends came over on the anniversary, and they talked about other things.

“5/14 is every day to me still,” he said. “I watched my mother get killed on video.”

The video and a photo of the shooter — standing with the gun he used, a vulgar racial slur scrawled on its barrel — are “ingrained in my brain,” he said.

Tirzah Patterson and her 13-year-old son, Jaques “Jake” Patterson — who lost his father, church deacon Heyward Patterson, in the supermarket shooting — left town altogether for the anniversary. They have not set foot in Tops Friendly Market since it reopened last summer and did not attend the memorial events in Buffalo for her ex-husband and the others who were killed.

“We don’t want to go through that again,” Tirzah Patterson said before the weekend. “We’re going to be gone.”

They spent Mother’s Day weekend in Detroit and attended a church service there.

___

While some are just crossing the one-year mark, others have been dealing with these anniversaries for years.

Topaz Cooks marked the 10-year anniversary of her father’s death last September. She was a month shy of her 21st birthday in 2012 when her dad and several others were shot and killed at work by a man who was fired from the company in Minneapolis.

“I still cannot believe that happened to my family,” she said.

On the anniversaries, she likes to do things her dad, Rami Cooks, enjoyed. Last year, she went on a hike and ate dessert — because her dad loved rugelach, birds and wind. She loves that her friends send her photos of their dessert that day each year with the caption: “For your dad!”

She also has a journal she writes in once a year on that day, filling her dad in on the highlights, challenges and thoughts from the year that she wishes she could share with him.

Seven years after the killing, Topaz Cooks said she experienced PTSD while working as a theater stage manager. She was surprised because she didn’t expect it to hit so late. The production’s plot may have triggered it — the play was about a woman avenging her father’s death.

She said she would get exhausted at the end of rehearsals, lie down on the floor of her office and feel like she couldn’t get up. At times, she felt like her skin was vibrating or that she was outside of her own body. It took months of therapy to feel like she was back in control.

Talking about the loss isn’t for everybody, but Cooks said it’s important to her.

“I wish that people talked about it more and normalized it,” she said. “Grief is just so lonely.”

___

A hint of fall hung in the air on Sept. 12, the day Presley threw a party to mark the day his daughter and her three friends were killed and left abandoned. He said he wanted to think about who his daughter was rather than how she died.

She loved to throw exciting and glamorous birthday parties for her kids, friends and family.

Presley placed a life-size cardboard cut-out of his daughter smiling in a pink outfit by the door. Guests wore T-shirts with photos of her and phrases like “Never Forgotten” and “Daddy’s #1 Angel.” At Presley’s request, guests gave speeches about the funniest things they remembered his daughter doing.

Late in the afternoon, they gathered around the front steps of his home, clutching red, yellow, pink and white balloons, some embossed with words like “Forever in Our Hearts.”

Wide-eyed children, following the lead of the adults around them, listened quietly as a woman sang the gospel song “Take Me to the King.” Presley recited a poem his father had written years before, words Presley’s daughter had adored.

“I meet the sunrise daily on the way to get mine,” he recited. “I don’t play myself ’cause I don’t got time.”

When he finished the poem, Presley gave the signal to release the balloons. They soared straight up, gently rising above the rooftops and disappearing into a clear blue sky.

Complete Article ↪HERE↩!

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Who should have the ‘right to die’

What’s happening

Three decades ago, Dr. Jack Kevorkian became the face of the incredibly contentious debate over medically assisted death. Dubbed “Dr. Death” in the media, he claimed to have helped at least 130 patients die before being convicted of second-degree murder in 1998.

Kevorkian died in 2011, but the argument over whether it should be legal for doctors to aid people in ending their lives is still far from settled. Today, 10 states and Washington, D.C., allow medically assisted suicide — a process in which life-ending drugs are supplied to patients, who administer the dose themselves. The laws differ, but they generally state that individuals must have a terminal illness and a prognosis of less than six months to live to qualify. Only two states, Oregon and Vermont, allow medically assisted suicide for nonresidents.

While the U.S. is one of just a handful of countries to legalize what is often called medical assistance in dying (MAID), our laws are significantly more restrictive than those in some of our peer nations. For example, America is the only country to require a terminal diagnosis. All others allow people living with incurable illnesses that cause them “unbearable pain” to choose a medically administered death. Most permit both assisted suicide and euthanasia, in which doctors administer life-ending drugs directly. Several also permit MAID for people with severe mental illness and let individuals make “advance requests” in cases in which they’re expected to lose their capacity to make their own decisions in the future, such as from dementia.

Over the past few years, Canada has become the site of the highest number of medically assisted deaths in the world. There were more than 10,000 MAID cases in Canada in 2021. That’s more than the total number of assisted suicides estimated to have occurred in the U.S. since Oregon became the first state to legalize the practice in 1997.

Why there’s debate

At the most basic level, the debate over medically assisted death comes down to morality. Either you believe it’s categorically wrong for a doctor to help someone end their life or, like nearly three-quarters of Americans, you believe there are cases where people should be granted the “right to die” on their own terms.

The issue gets much more complicated when it comes to defining what those cases should be and what criteria people should have to meet before they’re allowed to choose a medically assisted death.

Advocates for expanding opportunities for MAID say that limiting access exclusively to terminally ill patients leaves countless people to suffer unnecessarily and denies them the ability to opt for a peaceful, pain-free death. They argue that a truly compassionate society would trust individuals to make their own choices, rather than insist that they die in a way that satisfies others’ sense of right and wrong.

But critics worry that more permissive assisted death laws could lead to a “death on demand” system or create circumstances in which people are pushed toward making the choice to die when that may not be necessary. There’s also concern that MAID could warp into a way for society to avoid the effort and expense of caring for its most vulnerable members, including the disabled, mentally ill and even the poor. Many critics point to troubling reports out of Canada — including one case in which a patient’s family claims he was “basically put to death” — as a sign of the slippery slope that can happen when there aren’t sufficient guardrails in place.

What’s next

Supporters of medically assisted death are hoping to expand the practice into more areas of the country. Bills that would legalize assisted suicide have been proposed in at least 10 states over the past year, though it’s unclear whether any of them will become law.

Perspectives

It’s inhumane to force people to suffer when they want to take a different path

“It is nothing less than cruel to prevent anyone from having some control in their most difficult hours as life comes to an end. Of course, there must be safeguards. … But for those who choose to end their suffering and for the families that support their decision, the death with dignity option should be available.” — Judy Kugel, Boston Globe

Assisted death should be available only in very limited circumstances

“Is it really more humane to deny a miserable person a clean assisted suicide than to grant it? Authorities should say yes: We won’t help you die because of your depression, poverty or unfit living conditions for the same reason we won’t take out your appendix if you have a broken leg, or prescribe lithium for a nasty case of psoriasis.” — Chris Selley, Wall Street Journal

Freedom to die should be treated as basic human right

“The ability to end one’s life is an important freedom. Our bodies belong to us, not the government. We should have the power to decide whether we wish to continue living, particularly if we are in constant pain or suffering debilitating or fatal illnesses.” — Scott Shackleford, Reason

The foundations of our humanity begin to crumble when life loses its value

“The idea that human rights encompass a right to self-destruction, the conceit that people in a state of terrible suffering and vulnerability are really ‘free’ to make a choice that ends all choices, the idea that a healing profession should include death in its battery of treatments — these are inherently destructive ideas.” — Ross Douthat, New York Times

Canada has shown how dangerous MAID can be for vulnerable people

“The introduction of euthanasia in Canada has become the slipperiest of all slippery slopes. Of course, the expansion of assisted suicide laws in the U.S. will produce the same troubling problems. … Canadians have the right to die, but do they have the right to live in the face of medical challenges?” — Valerie Hudson, Deseret News

We don’t have to choose between protecting the vulnerable and giving people the right to die with dignity

“Let’s be clear: It was always going to be complicated to find the proper balance between protecting patients and helping them die. Complicated but achievable. It should absolutely be possible to write laws that protect elderly, sick, disabled and otherwise vulnerable people from manipulation or coercion while still providing competent adults with options for relief from intolerable suffering or irremediable illness.” — Nicholas Goldberg, Los Angeles Times

The worst case scenario is a world where people can choose to die at any time for any reason

“The ultimate goal — or, at least, the consequence — of allowing assisted suicide/euthanasia is death on demand.” — Wesley J. Smith, National Review

Banning MAID leaves people to face, and often choose, death entirely on their own

“People facing the grim, painful finality of their lives are committing suicide right now, many without a physician present to ease their suffering — or to talk them out of it. Patients can’t be the primary decision maker on end-of-life options if the government refuses to permit the existence of a decision. Patients can’t consult with doctors or loved ones about their end-of-life preferences if the consultation itself is illegal.” — David Colborne, Nevada Independent

Current limits are so restrictive, the “right to die” largely exists only on paper

“The few places in the United States where assisted suicide is allowed impose restrictions so exacting they are difficult for people in state, and often nearly impossible for anyone out of state, to meet.” — Pamela Paul, New York Times

Sometimes life isn’t better than death

“The idea that any life is better than no life at all is largely unexamined and unchallenged, especially by the young and healthy. … But isn’t the principle itself — life at all costs — due for a reevaluation that pays more attention to the wishes of the individual? Wouldn’t more control of the time, place and circumstances of our deaths alleviate some of our fear of dying, if not of death itself?” — John M. Crisp, Tribune News Service

Complete Article ↪HERE↩!

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How to talk about end-of-life arrangements with aging loved ones

By Karen Garcia

Amy Pickard wants you to talk about death. Specially, she wants you to make your healthcare planning and end-of-life arrangements known to your loved ones.

She knows that talking about death is going to make most people squirm. But the Southern Californian, who runs the end-of-life consulting company Good to Go!, says an awkward but respectful conversation now lessens the grief of a loss when the inevitable happens and allows people to honor a deceased loved one’s wishes.

“I tell adult children to tell their parents, ‘Hey, I’m getting organized with all my advance planning, and I just realized that if I don’t know what I want, you guys certainly wouldn’t know,’” she said. “‘And then I thought if something happens to you guys, I wouldn’t have a clue what to do, and that terrifies me.’”

For some people, it comes from a fear of dying, said author Cameron Huddleston. She said having to talk about end-of-life arrangements feels like being forced to think about mortality.

“However, avoiding the subject doesn’t mean you can avoid the inevitable,” she said. “It just means that you probably won’t have a plan for your death, and you’ll make things harder for those you leave behind.”

Why we need the death talk

Pickard and other advocates for end-of-life planning find that sharing their personal experiences helps normalize the conversation. Pickard shares with clients her experience of grieving the loss of her mother, who died unexpectedly at age 67.

“So I’m in the wilderness of grief, and at the same time I had to suddenly be an accountant, a florist, a detective, a travel agent, an estate appraiser and just all these things. And I was none of those things,” she said.

Her mom didn’t leave any instructions or wishes. Pickard described the work of wrapping up her mother’s life as overwhelming emotional labor.

In the midst of grieving a parent’s death, you might also have to plan the memorial, end monthly magazine subscriptions and notify others of their death. It’s not easy to juggle these tasks or final wishes if you don’t know what someone wants or where their information is stored.

That’s compounding grief with tasks that are frustrating in the best of times. To avoid it, you’ll have to have a difficult conversation that a parent might not be ready for. Asking if your parent would prefer to be buried or cremated (or something else entirely) could elicit responses like “I’m not that old” or “Why, are you trying to get rid of me?” No, you aren’t, but you can’t be their advocate without knowing what they want.

“It’s OK to acknowledge that the topic is uncomfortable, but you could say that you would be even more uncomfortable making arrangements for them without their input,” Huddleston said.

What do you do when someone dies?

Because we find death so hard to talk about, there are probably lots of things people wonder but don’t know. We have answers.

Not having a parent’s healthcare wishes and end-of-life instructions could leave a child wondering whether they made the right decisions.

It can also be an overwhelming experience to sort through a person’s belongings for information.

When Pickard’s mother died, she had no directions to follow. The minute she arrived at her mother’s condo in Chicago to cancel the utility bills and take care of other death duties, Pickard realized that she didn’t know the name of the electric company that kept the lights on.

“I would have given anything to talk to my mom again,” she said. “Not to tell her I loved her, but to get her Wi-Fi password.”

At the end of the day, having this information at the ready allows people to focus on love, Pickard said — how much that person was loved and how much people loved them.

This future peace of mind extends to the person who made their end-of-life wishes known. Pickard says these instructions aren’t just mundane bill canceling. For an adult child, it can be the last time a mother, father or guardian takes care of them.

Huddleston added, “Think of letting your family know what your final wishes are as a gift — your final gift to them. You’ll make it easier for them during a difficult time by having a detailed plan that they can follow.”

Starting the conversation

There isn’t one right way to approach this conversation. It really depends on whom you are talking with.

If you know your person doesn’t like to be taken by surprise, give them a heads up, said Kate DeBartolo of the Conversation Project, an initiative of the Institute for Healthcare Improvement. For example, DeBartolo said, if you’re planning a two-week visit with your parent, let them know beforehand that this topic is on your mind and that you would like to talk about it with them.

This gives the person the opportunity to think about what they want if they haven’t already.

You can sit down and talk about it over coffee or sprinkle it into everyday conversation when it feels natural.

If you’re watching a TV show or movie that depicts a funeral, that could prompt the conversation. You could say, “That made me realize I’m not sure of what you would want in that situation” or “Do you agree with the decision that character made for their parent?” DeBartolo said.

It could be a one-on-one conversation or it could be done with several people.

“I heard a woman who said she made desserts for her family at Thanksgiving and she held them all hostage and said, ‘No pumpkin pie until you tell me how you want to die,’” DeBartolo said. “And everybody would go around the table and talk about it, and that worked for her family.”

Having the conversation

Before you broach the subject, DeBartolo wants you to keep in mind the following:

  • Your questions won’t be solved with one conversation. The more you discuss it, the easier it will be for someone to talk about and share their thoughts.
  • Don’t wait until the end of someone’s life to talk about their wishes. There’s a misconception that this conversation should happen with older adults. DeBartolo argues that everyone over 18 should get their arrangements in order or at least start talking about it. Keep in mind that the information will need to be updated whenever you move, get married, divorced or have a child.
  • Don’t start the conversation with financial questions. You might give a person the wrong impression — that you only care about their money.
  • Be an active listener. The person you’re talking with might not give you a straight answer. DeBartolo said a grandmother might say that she wants “home” to be a part of her end-of-life care. Ensuring that Grandmother is at home might not be feasible, but “home” could mean having home-cooked meals, living in a facility that allows her cat or having personal effects with her.

Lastly, when you’re ready to reach out to someone, remember to frame the conversation with compassion. This doesn’t have to be a painful talk, DeBartolo said. It can be loving, a time to share memories.
In the conversation, Huddleston said, find out the following information at the very least:

  • How the person wants their remains handled. If burial is their choice, ask if a plot has been purchased or where they would prefer to be buried.
  • What type of memorial service they want, including music choices and who will speak.
  • The names and contact information of the people they would like to be notified of their death.
  • Information for the obituary.
  • The location of wills, trusts and any life insurance policy.
  • A list of assets and accounts, including things like the names of their utility companies — and their computer login and Wi-Fi information.
  • Any specific instructions for how they want heirs to handle their inheritance.
  • Arrangements for children or pets.

Some people will never want to talk out loud about this, and DeBartolo said that’s OK too. Let them know you’re open to hearing how they’d like the end of their life handled in any way they feel comfortable communicating it. If they can send you an email or a text of a few instructions or tell you where their important documents are, that can be enough.

Resources

The Conversation Project has a free starter guide and focuses on end-of-life healthcare.

Good to Go! sells a “departure file” and offers consulting services in a private or group setting. The latter is called “Good to Go! Parties,” an upbeat gathering to talk, eat, drink and fill out the departure files.

CaringInfo, a program of the National Hospice and Palliative Care Organization, has guides and resources to help clarify the difference between hospice and palliative care or what you need to create an advance directive.

International End-of-Life Doula Assn. has a directory of doulas who can assist with advanced-care planning.

Death Cafes, in-person or online, are group-directed discussions of death with no agenda, objective or theme. It’s a discussion group and not grief support or counseling.

The California Office of the Attorney General has an end-of-life care checklist, resources including Medicare information, an advance healthcare directive checklist and more.

Complete Article ↪HERE↩!

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Less Than Half of U.S. Adults Have Wills or Advance Healthcare Directives

By Laurnie Wilson

Death or medical emergencies are never topics that are easy to address. However, a last will or testament can make a difference in the way that one experiences aging, as well as how families grieve in the aftermath of a deceased loved one. Gallup findings from 2021 show that less than half of U.S. adults had a will at the time. Where do Americans stand today on last wills, as well as living wills and advance healthcare directives?

Around 4-in-10 Have Last Wills, More Are Planning On It

New CivicScience data show that the percentage of U.S. adults with wills is still less than half – 38% of Americans currently have a last will and testament detailing property and asset rights after death. However, half of respondents plan to create one in their lifetimes, and 22% plan to make one in the next 12 months. If that were to happen, over 50% of Americans would then have a will by this time next year.

As it turns out, last wills are most common among:

  • Adults aged 65+: 61% have a will, compared to 46% of those aged 55-64; 35% of those aged 35-54; and 22% of those aged 18-34.
  • Homeowners: 49% have a will, compared to 23% of renters.
  • High-income earners: the higher the annual household income, the more likely someone is to have a will.

Age 65 and up appears to be when most Americans are likely to create a will for their financial assets. Less than half of adults under age 65 currently have a will, but between 20-25% plan on creating one in the next 12 months. To no one’s surprise, adults aged 18-34 are the most likely to not plan on making a will (16%), although 62% foresee creating one at some point in the future.

Additionally, attorneys are the most popular option when it comes to the process of preparing a will. More than half of U.S. adults said they used an attorney to prepare their will, while 17% used an online site such as LegalZoom or Free Will, and 34% either wrote their own will or used other means (n=2,202). However, adults aged 34 and younger showed a high rate of using online sites (28%) compared to an attorney (36%). Legal document preparation websites and digital services are likely to become increasingly popular over the traditional use of an attorney as the U.S. population grows older.

Living Wills Are Alive and Well

A living will allows individuals to state their healthcare preferences in the case that they are unable to communicate them at a future date. More than a third of Americans report having this type of advance medical directive (34%), slightly lower than the percentage of those with last wills. Over a quarter (26%) say they plan on creating a living will in the near future.

The data suggest that knowledge of this type of advance medical directive is surprisingly high, as just 7% of adults say they are unfamiliar with a living will and 47% are planning to create one at some point in life. Adults aged 65+ are once again the most likely to already possess a living will, but adults across the board demonstrate a high interest in creating one, including 52% of adults aged 18-34.

Interestingly, 24% of Americans have either a designated financial or healthcare power of attorney, and an additional 20% say they have both (n=3,927).

Americans Are Planning for Their Futures

Of course, legal documents aren’t the only aids Americans may turn to in order to ease the burden of their passing. For some, life insurance answers the question of how to ensure your family is prepared in the event of your death.

As of 2023, 57% of U.S. adults say they have a life insurance policy, the same percentage as in 2022. And as the data show, those who have life insurance are highly likely to have a last will or to be planning to create one if they haven’t already. That said, a significant portion of people without a life insurance policy and not intending to secure one currently have a last will (49%), but they are also the least interested in creating one in the future.

Finally, data show those who have a will or plan to create one are more optimistic about the future than those who never plan to create one. So while some may view end-of-life preparation as a sign of pessimism, perhaps sentiments are changing, as many Americans plan to take steps for the future.

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‘Devastated’

— PeaceHealth makes cuts to palliative care

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

By RALPH SCHWARTZ

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

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

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

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

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

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

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

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

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

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

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

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

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

A patient’s story

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

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

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

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

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

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

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

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

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

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

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

PeaceHealth’s mission

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

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

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

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

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

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

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

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Why Americans Are Dying So Young

A memorial of white crosses is erected to the children killed at school in Uvalde, Texas at the starting point of the March for Our Lives protest on June 11, 2022 in the Brooklyn borough of New York City. Across the country in various cities, thousands are gathering to demand for meaningful gun laws following the recent shootings from Uvalde, Texas, to Buffalo, New York. The March For Our Lives movement was spurred by the shooting at Marjory Stoneman Douglas High School in Parkland, Florida, in 2018.

By Laudan Aron and Gavin Yamey

Life expectancy in America fell sharply in 2020. It fell again in 2021. The COVID-19 pandemic certainly played a role, but that’s not the whole story. During this same time period, eight of the ten leading causes of death also increased. Even maternal and child and adolescent mortality increased. In August 2022, federal health officials released new data showing that across all demographic groups, Americans are dying younger.

Ten years ago, a landmark report called “Shorter Lives, Poorer Health” documented for the first time a widespread “U.S. health disadvantage,” a shortfall in the health and survival of Americans relative to other high-income countries [Aron was the report’s study director]. On some measures, such as violent deaths among males aged 15-24, the divergence from other rich countries began growing as early as the 1950s. The report showed that the U.S. had the lowest life expectancy among peer countries and higher rates of injury, illness, and death from dozens of causes. Evidence of this disadvantage was found for young and old, rich and poor, men and women, and Americans of all races and ethnicities.

Another seminal report released in 2021, called “High and Rising Mortality Rates Among Working-Age Adults,” showed that U.S. mortality rates have been increasing in mid-life (ages 25-64), the prime years for family formation, childrearing, caregiving, and employment. More surprisingly the rising mortality among U.S. children and youth between 2019 and 2021 represents a profound crisis. Although not predictive of future mortality conditions, which are likely to change, current survival rates mean that one in 25 American five-year olds will not reach their 40th birthday.

The reasons behind these disturbing trends are many, and one might argue, uniquely American. Here are five:

A poor start in life for many young Americans

Beyond the latest data on rising pediatric mortality rates, it is clear that the U.S. is failing its youngest citizens on multiple fronts. For at least a decade now, cross-national comparisons of child and adolescent wellbeing in rich countries show that the U.S. ranks at or near the bottom on most measures. Such measures include material wellbeing, health and safety, behaviors and risks, education, housing, family friendly policies, and social protection. Further, careful analyses of overall levels of social spending by country show that, compared to other high-income nations, the U.S. is distinct in how it spends, not how much it spends. American spending is much less redistributive, with fewer benefits going to children, families, and the disadvantaged. In addition to high rates of infant and maternal mortality, the latest data show that U.S. children are in the midst of a deepening mental health crisis, with increased access to firearms and opioids driving up rates of suicide, homicide, and overdoses. In 2020, firearm-related injuries surpassed motor vehicle crashes to become the leading cause of death among young Americans ages 1-19.

A dysfunctional and costly healthcare system

Among the many factors driving health and survival is healthcare. The U.S. has long been known for having one of the most complex, fragmented, and expensive healthcare systems in the world. For millions of Americans, quality, affordable, accessible healthcare is simply out of reach (and the uninsured are more likely to die young than the insured), or it is effectively unavailable, or disappearing due to political pressures, as in the case of sexual and reproductive healthcare. The U.S. healthcare system, its high costs, and its poor health outcomes, start to “make sense” when viewed through a business case lens, and its optimization of revenue and profits, rather than health and wellbeing. As Dr. Elisabeth Rosenthal, editor-in-chief of KFF Health News, says about the U.S. medical market, “a lifetime of treatment is preferable to a cure” and “prices will rise to whatever the market will bear.” It should come as no surprise then that that the U.S. healthcare system is one driver of the poor health and survival of Americans, many of whom are uninsured, underinsured, medically undertreated or overtreated, distrustful of the system, and drowning in medical debt. Finally, the astounding $4.3 trillion (or $12,914 per person) spent annually on healthcare in the U.S. far exceeds spending in other countries around the world, and crowds out other social investments that matter to human development, protection, and flourishing.

Societal systems that undermine wellbeing and accelerate inequality

Beyond healthcare, many other aspects of life and the policy-driven systems that underpin them are compromising the health and wellbeing of Americans. Lives are diminished and lost because of the U.S. approach to food and nutrition, housing and civic infrastructure, education and training, employment and entrepreneurship, crime and safety, economic and community development, credit and financial services, social protection and safety nets, and environmental conditions. Deep dives into most of these systems often reach two strikingly consistent conclusions: (1) they are perpetuating or accelerating inequality, and (2) they are working as designed, meaning their seemingly perverse effects are a feature, not a bug. These systems reflect both historical factors and ongoing choices by policymakers and private sector interests. The good news here is that other countries are making different choices, which (in theory) means the U.S. can too. We can rein in negative commercial determinants of health (private sector activities affecting health) and instead build genuine care systems and adopt a health-in-all-policies agenda, defined by the CDC as “a collaborative approach that integrates and articulates health considerations into policymaking across sectors to improve the health of all communities and people.”

An inadequate policy response to growing inequality and precarity

The large and growing U.S. disadvantage in health and survival is, in part, a reflection and accelerant of economic inequality and precarity. U.S. income and wealth inequality is high, has risen substantially over recent decades, and exceeds levels in other advanced democracies. Some might argue that high levels of inequality are acceptable as long opportunity and socioeconomic mobility remain high. But such opportunity and mobility have seen a dramatic reduction in the last half century, with only half of children today earning more than their parents did, compared to 90 percent of children born in 1940. Equally importantly, Americans greatly underestimate actual levels of wealth inequality and still prefer that wealth be more equitably distributed. The conditions producing such high levels of inequality — and ways of mitigating or reversing them — are of course matters of public policy. In addition to more progressive tax and transfer policies, which also affect many middle-class entitlements, any policy that expands access to the social determinants of health – nutrition, education, employment, housing, transportation, safety, justice, caregiving – will in turn improve population health and wellbeing. Policymakers influence their availability, accessibility, and affordability. One reason other high-income nations outperform the U.S. on health and survival is because the many resources that matter to health and wellbeing are distributed (or redistributed) more equitably and they have stronger systems of social care and protection.

Structural racism, racial capitalism, and their attendant injustices

Although the U.S. health disadvantage affects all Americans, even privileged ones, the most marginalized communities have always paid a much higher cost. The latest data on U.S. life expectancy by race/ethnicity confirm this and are a powerful reminder of the ongoing influence of systemic racism in the American landscape. As Dr. Camara Jones, past president of the American Public Health Association, explains, racism is “a system of structuring opportunity and assigning value based on the social interpretation of how one looks (what we call ‘race’), that unfairly disadvantages some individuals and communities, unfairly advantages other individuals and communities, and saps the strength of the whole society through the waste of human resources.” By unfairly structuring opportunity and allocating access to the resources that matter to health and survival, structural racism, racial capitalism (the interlinkages between capital accumulation and racial exploitation), and other forms of injustice directly influence population health. It is critical to acknowledge these root causes of the U.S. disadvantage in health and survival, rather than fall prey to overly simplistic narratives that blame individual people and places for their poor health. Ostensibly race-neutral policies and practices often perpetuate an enduring legacy of racism, protecting the health of some communities at the expense of others. One fascinating example is when the Florida Department of Agriculture banned sugar growers from burning sugar cane “when the wind blows east” in an effort to protect wealthier, whiter communities from their toxic fumes.

Declining life expectancy in the U.S., and especially rising deaths rates of children and adolescents, should be a loud wake-up call for the nation. The more hopeful but still urgent news is that we can change this reality: conditions of life and death are direct reflections of our values and priorities and the policies we choose to govern our communities and the nation as a whole. If we are to enjoy a level of health, wellbeing, and survival similar to those in other advanced democratic nations, Americans will need to make a fundamentally different set of policy choices.

Complete Article ↪HERE↩!