‘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.”

May 18, 2023May 17, 2023

‘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.”

Complete Article ↪HERE↩!

May 12, 2023May 11, 2023

Cutting hospice beds to help people die at home

By Claire McAllister

The number of people dying in their own homes has risen since the Covid pandemic and one Scottish health board has taken the controversial step of cutting hospice beds to provide more palliative care in the community.

Over the past three years, NHS Fife has adapted its service by closing more than half its hospice beds to try to reach more patients at home.

The move has caused local controversy, with many calling for hospice beds in Dunfermline to be reinstated, but specialist teams say they are now able to respond more quickly and flexibly to people in pain and distress.

Lisa Potter is one of those receiving end-of-life care after at her home in Dunfermline.

The 52-year-old was first diagnosed with cervical cancer in 2017 but had been all-clear for almost five years when hip pain was revealed to be cancer and it was incurable.

Lisa said the hardest part was for her family as they watched her get more ill.

“They’re all there and they feel helpless and don’t know what to do,” she said.

“There’s nothing they can do, they’ve just got to stand-by and hope for the best and hope that I’m comfortable.”

After a stay in hospital, her health deteriorated and Lisa wanted to be cared for at home where she has enjoyed the “little things” like family TV nights and her own bed.

She said “there’s not a lot of independence” with her illness but that she wanted to stay at home as long as she was comfortable then die in the hospice.

“I think it’s great I’ve got that choice,” she said.

“It makes it easier for me. I know I’m getting the choice to go to the hospice and my family are not watching me die upstairs.”

Deaths at home

Most people still die in hospital but the number of people dying at home has been increasing in recent years.

It reached a peak level in early 2020 at the height of the Covid pandemic but has remained high since then.

Figures for March 2023 show there were 1,782 deaths at home or in non-institutional settings, which was 17% above the five-year average.

The latest figures show that last week almost a third of deaths were at home (365).

As more people live longer with long-term conditions and advanced illnesses the demand has grown for end-of-life care a home.

In Fife, palliative teams work with GPs, district nurses, care home staff, hospital clinicians and charities to support people living with terminal conditions.

Dr Jo Bowden, a consultant in palliative medicine, described the greatest value of her specialist team as their ability to respond when people’s needs changed quickly – whether that was because of distress, physical symptoms or family circumstances.

She said work had been ongoing for years to change the service but at the start of the pandemic fewer people wanted to come into the hospice so they had too many nurses and doctors in that facility but not enough working in the community.

“Preferences often change with time but very clearly most people would choose to spend most of their time as their illness advances and towards the end of life at home,” she said.

“It’s not possible for every person but even for those people who need to come in either for a short spell or at the end of their lives the majority of their life lived will be at home.

“So that tells us that the majority of our resource needs to be there,” Dr Bowden said.

Inpatient care

Eleven beds in the hospice were closed to free-up staff and provide care that had only previously been available in the hospice setting. That has left eight hospice beds in the area.

Prior to the pandemic, the specialist team could look after a maximum of 19 patients but that has increased to 60 people under the changes.

Staff had previously only been able to work in particular settings but have changed to being able to work in any care setting on any day.

Demand for hospice care remains significantly lower than pre-pandemic in Fife. Since the changes, waits for a hospice bed have halved to one and a half days.

Before the pandemic 80% of the service budget was spent on inpatient care.

“We absolutely acknowledge that whenever bed closures are talked about, it causes anxiety,” Dr Bowden said.

“What we believe very firmly is that we’re delivering more for more people by using our resources more effectively.”

Jane Morris worked as a district nurse before moving to work with the specialist palliative care team. She can see a big difference for patients.

She said: “We struggled to get care to keep people at home before but now we’ve got it on tap.”

Proposals to permanently maintain these changes to the palliative care service in Fife are due to be considered at an Integration Joint Board meeting later this month.

However, more than 2,000 people have signed a petition launched by Claire Baker MSP calling for hospice beds in Dunfermline to be reinstated after closure of the ward at the start of the year. All inpatient hospice beds are now in the Victoria Hospital in Kirkcaldy.

The Fife Labour politician believes palliative care should be provided as locally as possible to support families and give people the choice so she wants to see the plans to make these changes permanent paused.

A new Scottish government palliative care strategy is due to be published later this year.

Complete Article ↪HERE↩!

May 6, 2023May 5, 2023

The End of Life Debate

— More states and countries are enacting laws to let terminally ill patients in great pain decide for themselves 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.

A person holding a "end of life consultation" pamphlet. Next Avenue, end-of-life debate, medical aid in dying — 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 it.

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.

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.

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, DC, 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 health care 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.

Kim Callinan, Compassion & Choices

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 non-resident cases.

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

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.

Complete Article ↪HERE↩!

April 8, 2023April 8, 2023

How To Support A Loved One Suffering From A Life-Threatening Illness

By Amanda Chatel

Watching someone you love suffer through an illness that could possibly lead to the end of their life is one of the most difficult things anyone can encounter. It doesn’t matter if your loved one lived well into their 90s or they’re still in the prime of their life — it’s a tragic loss for everyone involved. That’s especially true for the one who’s been diagnosed.

“You can be the most intelligent, organized person in the world, but hearing distressing news about your condition makes it hard to keep things straight,” associate medical director for Capital Caring Farrah Daly, M.D. tells WebMD.

Because of this, trying to navigate how to support a loved one in such a position can feel daunting. You want to be there for them, but you also want to give them their dignity and space when they need it. You want to be helpful, but also not treat them as though they’re incapable of things that they can still manage — and even want to manage — to do. It’s all about finding the right balance as to how to support them in a way that makes their mental and physical health as stress-free as possible during this difficult time.

Be honest with each other

There’s no sense in tiptoeing around the truth. If your loved one has a life-threatening illness, then it simply can’t be ignored. If there are children who will be affected by the illness, the truth shouldn’t be kept from them either. We live in a culture that still treats death as a taboo subject, which makes talking about it even more difficult. But it shouldn’t have to be that way.

“Death is an inevitable part of all our lives, and yet in modern society we have become far more distanced from the first-hand reality of it,” chief executive of Sue Ryder, a bereavement support center, Heidi Travis tells BBC. “It’s really time to open up a national conversation on death and dying with greater education and dialogue.”

While the illness shouldn’t be the only thing that’s discussed during this time, having conversations about it (instead of fearing the talks) will help everyone. It may not lead to acceptance of the illness — but it will help eliminate the stigma surrounding sickness and death.

Allow your loved one to feel their feelings

Until you’ve been diagnosed with a life-threatening illness, you’ll never truly know what that type of information does to a person. With this in mind, it’s important to allow your loved one to feel their feelings — all of them. If they’re feeling rage, anger, sadness, fear, guilt, cheated, or any other emotion, the best way to support them is to let them feel it all and actively listen to everything they’re saying. It’s important to realize that there’s no right or wrong way to grieve. Being given such news can bring out parts of your loved one that you may have never seen before.

“Let them feel what they want to feel by ensuring they are comfortable around you,” CEO of Grief Coach Emma Payne tells TZR. “But remember, everyone mourns differently, so be there for them whichever way they choose to cope (unless it’s dangerously unhealthy) … simply listen and sit with them as they grieve.”

If your loved one is dying, you can’t change that or take it away. But you can give them all the space they need to mourn their impending passing. Talk about everything they need to say before it’s too late.

Ask your loved one who they want to notify

Because of the taboo surrounding death and life-threatening illnesses, make sure you get the okay from your loved about who they would like to know about their sickness — and whom they’d prefer to keep in the dark. Not everyone is comfortable sharing such news, just like not everyone is comfortable receiving such news.

“Some people want to tell their story over and over again to each person — it helps them process their feelings,” associate medical director for Capital Caring, Farrah Daly, M.D., tells WebMD. “Others don’t want to relive the experience and would rather someone explain things for them. There’s no one right way.”

Even if you disagree with your loved one about certain people knowing that they’re sick, this is not your journey. While anyone who knows and loves someone with a life-threatening illness is involved, ultimately, this isn’t about you; it’s about the person who has the illness. Do right by them and only tell those whom they want to know about it.

Come up with a schedule

Depending on how far the illness is, there may be a need for a schedule for family members to stick to make sure your loved one is as comfortable as possible. For example, on Tuesdays and Thursdays, someone might be in charge of taking your loved one to doctor’s appointments. On Sundays, someone can bring over food for a few days so the person who is ill doesn’t have to think about preparing meals.

“Don’t wait for them to ask,” Dr. Varun Choudhary tells Bustle. “Instead, offer to help by bringing over dinner, shopping, gardening, etc.”

When people are very sick, they sometimes forget to take care of themselves because their mind is someplace else. Creating a schedule that everyone agrees works for them to make sure your loved one has food, takes their medication when they’re supposed to, and never misses a doctor’s appointment, creates an entire network of support so no one feels alone during this heartbreaking time.

Help them achieve any final wishes

If it looks as though your loved one is coming to the end of their life, then it’s time to have the very difficult talk about end-of-life wishes. In addition to helping them get their affairs in order so they don’t have to worry about how their last will and testament will be received by beneficiaries, you also want to talk to them about things they didn’t do, but might still want to. They’ve never seen the Pacific Ocean? Then it looks like it’s time for a road trip. They’ve always wanted to see the Red Sox play against the New York Yankees? Well, buy some tickets and get ready to heckle the opposing team’s fans (and enjoy boxes and boxes of extra salty popcorn).

Of course, not all wishes can be granted. But those that can fulfilled? Do your best to honor them for your loved one’s sake.

Allow yourself to grieve

Although you should try to avoid grieving in front of your sick loved one, it’s only natural to grieve what you’re going to lose — and grieve what your loved one is losing too. Grief is complicated. While your grief is going to look very different from the grief of your sick loved one (because you’re grieving different things), you shouldn’t try to suppress your feelings. People can’t be fully present and supportive if they’re hiding from their own feelings.

“Many people say they are feeling a heavy sadness — and what they’re describing is grief,” thanatologist David Kessler tells The Guardian. “We’re grieving the world we have lost: normal life, our routines, seeing our friends, going to work. Everything has changed. And change is actually grief — grief is a change we didn’t want.”

There will be okay days, and there will be bad days, but rarely good days as you support your loved one through this. You can’t undo reality. But as long as you stand by them and give them all the love and support you can, then you will have done right by them — and you won’t regret what you should have done differently down the road.

Complete Article ↪HERE↩!

March 31, 2023March 30, 2023

To Die on Her Own Terms, a Connecticut Woman Turns to Vermont

— Connecticut does not allow medical aid in dying, so Lynda Bluestein sued Vermont to take advantage of that state’s law. Now, legislators may make the practice more broadly available.

Lynda Bluestein of Bridgeport, Conn., reached a settlement with Vermont to become the first nonresident with access to its medical aid in dying law.

by Lola Fadulu

Thanksgiving is typically a joyous time for the Bluestein family. Their Bridgeport, Conn., home is filled with laughter, music and even a cooking competition. But last fall, the mood was somber.

“I think next year will be the year that Grandma will die,” Lynda Bluestein, 75, recalled telling her husband, children and grandchildren as they gathered in the living room.

Ms. Bluestein’s 16-year-old twin granddaughters asked if she was scared.

“I’m just happy that I don’t have to suffer endlessly,” she replied.

Ms. Bluestein, who was diagnosed with late-stage fallopian tube cancer, said that if chemotherapy stopped working, she intended to make use of a Vermont law that allows certain people to seek and self-administer a lethal dose of medication to hasten their death. The law limits the option to Vermont residents — and Ms. Bluestein was willing to move there, if need be — but this month the state waived the residency requirement for her, part of the settlement of a lawsuit in which she had argued the restriction was unconstitutional.

Now, Vermont lawmakers are considering scrapping the residency requirement altogether, making the practice more broadly available.

The debate over the proposal has parallels to the issue of abortion, in which access to the procedure now differs greatly from state to state in the wake of the 2022 Supreme Court ruling that overturned the right to abortion nationwide.

“To my knowledge, other than what is happening right now with abortion, there are no other medical procedures that are limited to people on the basis of their residency,” said Amitai Heller, a senior staff attorney with Compassion & Choices, an advocacy group that supports expanding access to end-of-life medication. The group helped file the lawsuit on Ms. Bluestein’s behalf.

“It’s just unfair, and it doesn’t really make sense to restrict some sort of medical practice just based on ZIP code or residency,” Mr. Heller said.

Vermont is one of 11 jurisdictions, including Washington, D.C., where certain patients with a terminal illness can seek a lethal dose of medication as they near the end of their lives. Oregon is the only jurisdiction without a residency requirement, after officials there agreed in a 2022 settlement not to enforce the one in its law.

Connecticut, where Ms. Bluestein lives, is not among the states where medical aid in dying is legal. Bills have been introduced repeatedly, starting in 1994, and have failed each time, most recently in 2022. That is when Ms. Bluestein looked to Vermont.

“I thought, I can’t wait any longer for Connecticut to get its act together,” she said.

(Legislation to legalize medical aid in dying has been introduced regularly in New York since 2016 but has failed to pass. New Jersey has had such a law since 2019.)

In the Vermont General Assembly, the bill that would remove the residency requirement passed the House in February and is awaiting action in the Senate.

“We had heard from advocates and our health department that this aid in dying is a medical health care,” said Representative Golrang Garofano, who is known as Rey and is a sponsor of the bill. “There’s no other restrictions around residency requirements for other types of health care.”

Oregon was the first state to pass a medical aid in dying law; it took effect in 1997. Its residency requirement was included to “neutralize the myth that terminally ill people would flock to Oregon to use its medical aid-in-dying law,” said Barbara Coombs Lee, a co-author of the measure. The requirement was also meant to ensure that the law would be “tightly controlled and limited to test safety and effectiveness.”

Vermont modeled its law after Oregon’s, said Ann Pugh, a former lawmaker who worked on the legislation. Ms. Pugh said she now supports the effort to drop the residency requirement. “When someone comes to Vermont, they follow the rules of Vermont, they follow the laws of Vermont, they get the care, they get the services, and this should be no different,” she said.

But opponents do not consider the practice medical care.

“This isn’t a medical treatment,” said Jennifer Popik, the director of the National Right to Life Committee’s Robert Powell Center for Medical Ethics, which opposes such laws. “This is a medical professional abandoning their patient and giving them the tools to end their life.”

Detractors include the Catholic Church and disability rights groups, which worry that physicians and insurance companies may steer people with disabilities toward life-ending measures. Instead, those groups tend to favor improving palliative care, which is focused on easing the symptoms and side effects of disease and treatment.

Brian Kane, a senior director of ethics at the Catholic Health Association, said he was concerned about states’ expansion of access to the practice by dropping residency requirements. “Rather than trying to address the needs of vulnerable people, we offer them the possibility of killing themselves,” he said.

Anita Cameron, a disability rights activist, said that if patients reach the point where they would rather die than live in pain, their doctors are not properly managing their treatment. She said she feared that if the practice became more widespread, it would come to reflect the inequities in the broader health care system.

“There’s just no place for it, especially when we have such a long history of racial disparities in health care and disability discrimination in health care,” Ms. Cameron said.

But proponents of the practice say there are safeguards in the laws to prevent abuse. In Vermont, for example, patients must be 18 or older with a terminal condition and a prognosis of six months or less to live. They must be able to self-administer the medication and be capable of making their own health care decisions.

In Vermont, 173 patients participated in the “Patient Choice at End of Life” process between May 2013 and December 2022, according to the Vermont Department of Health. Many of those patients had cancer, and others had amyotrophic lateral sclerosis, or A.L.S.; neurodegenerative conditions; and other diagnoses.

Dr. Diana Barnard, a physician in Vermont who filed the residency lawsuit jointly with Ms. Bluestein, said she spends significant time with terminally ill patients discussing which options might be best for them.

“This really is all about patients,” Dr. Barnard said. “It’s about patients who are wanting to live, wanting desperately to live, but having to accept that they are living with an illness that is going to end their life.”

Dr. Barnard said her patients want a say in what happens at the end of their lives. They are thinking deeply through a number of ways to be physically and emotionally comfortable during their last days.

Dr. Barnard has patients from New York whom she sees regularly and said it had been difficult to tell them they were ineligible for medical aid in dying because they didn’t live in Vermont.

“It seemed unjust and unfair,” she said.

Dr. Diana Barnard sits in a rocking chair in her Weybridge, Vt., home. — Dr. Diana Barnard of Weybridge, Vt., specializes in hospice and palliative care.

Ms. Bluestein hopes that the Vermont residency requirement will soon be lifted. She said she was glad she would not be “at cancer’s mercy” and could instead make her “own decisions about when I have had just about all I intend to take from this latest cancer.”

The practice had been at the forefront of Ms. Bluestein’s mind decades before she got sick. Her husband, a physician, had done advocacy work with Compassion & Choices over the years.

Ms. Bluestein thought deeply about the option when her mother died. In the weeks before her death, her mother had a full course of chemotherapy and was fatigued. She didn’t even want Ms. Bluestein or her brother to visit.

“We had no time with her at the end of her life,” Ms. Bluestein said. “I don’t want my children, who are now 45 and 47 years old, to have those memories of me at the very end.”

Ms. Bluestein’s diagnosis of late-stage fallopian tube cancer in March 2021 was her third bout with cancer. She had been diagnosed with breast cancer in 2018 and had a double mastectomy. As she recovered, she was diagnosed with malignant melanoma.

For now, Ms. Bluestein is undergoing chemotherapy, and it appears to be working. If that changes, she is likely to end the treatment, which will quickly make her eligible for hospice. And that is when she is likely to request the lethal dose of medication.

In the meantime, she has been curating 50 years of photographs and putting them into boxes. She hopes to spend her final day, whenever it is, with her family sifting through the photos — ones of her children playing T-ball and soccer and of the family’s many trips to Disneyland — peacefully trading memories.

Complete Article ↪HERE↩!

March 18, 2023

A Good Death: A Father, a Daughter, an End-of-Life Decision

— Jennifer O’Brien’s father broke his hip while contending with advanced congestive heart failure. He declined surgery to fix it, opting for a peaceful death instead. She supported him. The system did not.

By Jennifer A. O’Brien, MSOD

“Your dad declined the surgery to repair his hip fracture,” the anesthesiologist blurted incredulously over the phone. “Okay. I guess there’s no surgery then,” I responded. “Well, here, talk to the orthopedic surgeon,” he protested. I shrugged and said, “Okay” to no one as the anesthesiologist handed the phone to the orthopedic surgeon. The surgeon came on: “Your dad declined the surgery!” he exclaimed. “I heard,” I said. “I mean, your father said ‘No!’” I could visualize the surgeon’s wide eyes.

My dad was 85 years old with advanced congestive heart failure and severe lung disease. He had fallen two days before and sustained a neck of femur (NOF) fracture, also known as a hip fracture. I had been very involved in my dad’s healthcare for several years. His mind was sharp.

Several years before that, he had signed a do not resuscitate (DNR) order, a legal document saying that in the event of a cardiac arrest he did not want to be resuscitated, as well as a do not intubate (DNI) order, a legal document stating he did not want to be intubated in an emergent situation in which he was unable to breathe. Because “Do not ____” instructs clinicians to hold something back, these code status documents may also be referred to as an instruction to “allow natural death.”

The orthopedic surgeon was unconvinced, however, and pressed on. “He declined the surgery!” “Yes, I heard. My dad is crystal clear cognitively and entirely capable of making this decision, so I guess you can take the rest of the night off,” I told him. The surgeon chuckled and mumbled, “I wish.” At this point, he seemed to realize that while he may have to work into the night, it would not include operating on Jim O’Brien. We said our goodbyes and hung up.

About 30 minutes later, I called my dad and told him that while I would have supported his decision either way, I felt he had made a good choice.

My dad’s congestive heart failure had reached the final stage. He barely had the strength to stand and ambulate enough for trips to the bathroom. A sudden cardiac arrest was distinctly possible, if not likely. His advanced lung disease meant that for the last two years, his ability to breathe had been entirely dependent on a bilevel positive airway pressure, or “BiPAP,” ventilator.

By “entirely dependent,” I mean he could not exist, for even a few minutes, without a large face mask that covered his nose and mouth while forcing oxygen into his lungs. He could eat for a few minutes at a time but had to have a nasal cannula in order to breathe.

He was likely to die soon, and a major surgery now might well have ruined any chance he had of a peaceful, comfortable end of life.

The reactions of the two physicians who called made me realize that our case was unusual, both because of my dad’s decision against surgery and my unequivocal support of his decision. I got the impression most family members would have responded, “Oh no, let me talk to him.” They would have then called and said, “Daddy, if you don’t have this surgery you are going to die!”

But here’s the thing, he was going to die.

And while our deaths may not be as imminent as his was, so am I and so are you going to die. At the end of life comes death. At the end of a long life, with or without comorbidities, an NOF fracture may indeed be the onset of that final phase of life.

My late husband, a surgeon for 30-plus years and then a retrained, board-certified palliative medicine physician for another 10 years, named this final phase of life “Precious Time.”

He always said it with the emphasis on the first word, Precious Time. Precious Time is when death is likely, if not imminent. Precious Time is a type of time, the period of life that comes at the end. Not everyone has Precious Time; a sudden death does not allow for Precious Time.

Knowing that a loved one is into Precious Time allows for saying what needs to be said and doing what needs to be done, such as: I love yous, apologies, and reconciliations. Precious Time allows you to keep to yourself and not say what you might later regret. In recognizing that we are into Precious Time, we can minimize or eliminate the subsequent I-thought-we-had-more-time regrets and focus on the love, the honor, and the bereavement rather than a vague or acute befuddled remorse because we just didn’t want to talk about end of life.

Even with surgery to repair the hip fracture, there is a 27 percent 12-month mortality rate among 65-plus-year-olds. That is, there is a 27 percent chance that an otherwise healthy 65-year-old will not survive more than a year post NOF fracture. Add more years and comorbidities, and that mortality rate only increases. In other words, an NOF fracture, with or without surgery, is often the beginning of the end.

Another statistic is that 80 percent of people want to die at home rather than in a hospital or facility, “hooked up to a bunch of machines,” yet only about 20 percent do.

If we put these statistics together and add our just-fix-it culture, which has us operating now and asking questions later, I submit that a patient having to remain intubated postoperatively or never recovering is not the way we make the most of that Precious Time and not the way that most people want to spend their last days, weeks, or months.

And, having now lost every member of my family, including my husband, I can say from experience that when surviving loved ones are able to recognize and face that they are into Precious Time, they are likely to have an easier transition to grief and loss.

Fortunately for my father and me, my late husband taught me well. After my dad’s decision to forgo the surgery, I got in the car and drove across the country. In his hospital room, we talked about the fact that he was dying, and that the most comfortable way for that to happen was to convert his inpatient status to hospice, remove the BiPAP after a sedative, and he would sleep into an entirely natural death.

My dad and I spent our Precious Time together. We said our goodbyes as the medication took effect. I told him I loved him because I know that hearing is the last sense to go. I stayed with him until he took his last breath and then made the disposition arrangements we had discussed years prior. It was a beautiful, peaceful death at 85 years old, one week post NOF fracture.

In the three years since I had allowed the art journal I kept during the 22 months I cared for my husband, and about 18 months after his death, to be published as the book The Hospice Doctor’s Widow: A Journal, I have spoken on what I call the Triad of Certainty:

At the end of life comes death.
There are no do-overs in end of life.
Changed forever, surviving loved ones remain and remember.

There is absolutely no one who will not die at the end of life — no one. Some of us don’t get married, don’t have children, but all of us die. And if we are lucky enough to love others, there is a good chance that one or more of them will die before us and their death will have an impact on us for the rest of our lives.

I am not saying that if you or your elder loved one sustains a NOF fracture, they should forgo the surgery. I am saying that protocol for an NOF fracture in a patient older than 65 should call for a pause rather than an unquestioned trip to the OR.

And that pause should include a consultation with a family practitioner, gerontologist, palliative care team, medical ethicist, social worker, end-of-life doula or whoever can facilitate a meaningful conversation, or more likely a series of conversations. These conversations should assist the patient and family in recognizing Precious Time, establishing the goals of care, and having a say in designing their end-of-life experience (even if it ends up being years hence).

Complete Article ↪HERE↩!