I decided my sister should die after an accident

— Now I’m filming people’s last moments at Dignitas

Jon: ‘A Time To Die, my latest feature documentary, was not my idea, but when the production company approached me, I didn’t hesitate’

By Jon Blair

Fifteen years ago, I stood in a hospital room in France as doctors gave my much loved elder sister a sedative before removing the apparatus that was keeping her alive. A few minutes later she stopped breathing, and even as I write this all these years later, my eyes well up with tears. I miss her every day.

As she had gently trotted round a training ring, Hilary, then 66, had been thrown off the horse on which she was having the last of 10 riding lessons. She was wearing a helmet but the fall broke her neck at the highest point possible, her C1 vertebra. She survived, thanks initially to the teacher giving her mouth to mouth resuscitation until the paramedics arrived, but once she had been stabilised at the closest hospital, it became clear that she would require mechanical respiration with a tube through her neck for as long as she lived. In addition to being unable to speak, she would be tetraplegic, in all likelihood dying from pneumonia or some other infection within a few years at best.

Hilary, Jon’s sister, whose life support the heartbroken family decided to switch off

The doctors asked what we, her family who had gathered from around the world, thought she would want, since she was in no state to communicate her own wishes, and we agreed by a majority of three to one that what lay ahead for her was no life she would or could accept. We gave the go-ahead for them to switch off the machinery and in so doing, to end her life. This was not an assisted death as such, but there is no question that as a result of the decision we took that day, a few weeks later we would gather at a crematorium in north London for her funeral. In that sense, we killed her.

And here I am now, standing in a room at Dignitas, in an industrial estate on the outskirts of Zurich, filming the last moments of another woman’s life. It’s been a long, emotional journey and I can only hope it will be worthwhile.

A Time To Die, my latest feature documentary, was not my idea, but when the production company approached me, I didn’t hesitate.

I was aware of the ongoing debate around the contentious issue of whether the current law on assisting someone to die should be changed. As it stands, in England, Wales and Northern Ireland, helping someone to die can lead to a 14-year prison sentence. Last month, the Isle of Man took a step closer to becoming the first part of the British Isles to legalise assisted dying after its Parliament gave a second reading to an Assisted Dying Bill. In Westminster, Parliament has debated changing the law three times in the past decade, and in 2015, MPs voted against the legalisation of assisted dying in England and Wales.

Dan is getting his Dignitas paperwork in order – or as he calls it, ‘his get-out-of-jail free card’

Currently, if you help someone to end their own life, there will most likely be a police investigation. While the circumstances will be taken into account when determining whether it is in the public interest to prosecute, you will probably be interviewed under caution, your home may be declared a crime scene, and it can take months or even years of living with a jail sentence hanging over you for a decision to be taken. All of this at a time when you are probably in the midst of grief.

This has to be one of the most difficult, personal and emotionally trying programmes I have made in a 50-year career reporting on wars and making documentaries. It took me deep inside the lives and deaths of people wrestling with wretched choices. People like Dan, 47, a former music teacher now living with multiple sclerosis, who continues to compose music on his laptop using movements of his tongue and nose, which are picked up by his screen. Dan now lives back with his parents and is getting his Dignitas paperwork in order – or as he calls it, “his get-out-of-jail free card”.

We spent time with Di and Trevor, a couple whose plans for a far-flung retirement travelling the world were halted when Trevor developed motor neurone disease. Unable to speak or eat, and in constant pain, Trevor used an iPad to answer my questions. At one point, he held up the words: “Utter boredom, pain, both actual and emotional.”

Under the circumstances, it was really quite remarkable the freedom our contributors gave us to record their lives, and in some cases, their deaths, and I suppose that must say something about our having convinced them of our ethics, along with our promise to respect their wishes throughout, and our genuine concerns for their welfare.

We negotiated rare access with Switzerland’s best known assisted dying organisation, Dignitas, and through them we contacted their 1,300 UK members, some of whom had joined because they sympathised with the cause, others because they might want it as an insurance policy for use at an unspecified later date, and others because they had a more immediate desire for an assisted death. We considered how best to negotiate the ethical and moral dilemmas of what to show and what not to show, and in this respect we were guided not only by Ofcom’s strict regulations but more importantly, by our participants’ own wishes. 

Kim and Andy, a couple who met at her university in Manchester, got in touch and invited us to document their life since Kim’s diagnosis of progressive supranuclear palsy (PSP), a rare neurological disorder.

Kim, a fiercely independent woman throughout her life, was so appalled by her deterioration that she was adamant about wanting to travel to Dignitas. Now reduced to using words sparingly, she gave it to me straight: “I will take a drink. I will die – hopefully painlessly.” Right from the beginning, they were both extremely willing to have us follow them the entire distance, however it unfolded. Indeed, we genuinely didn’t know if Kim would change her mind until we filmed the family packing up the car. Even then she might have decided to come home, right up until the point she finally took the drink that would kill her.

I gained so much from witnessing the compassion, care and love between the people who allowed us in at the bleakest point of their lives. It’s not easy getting up in the morning to go to work knowing that in all likelihood there will be a moment when the tears simply can’t be stopped. So, why, at an age when most of my peers will have retired, did I do it?

I felt ultimately that the best service we could provide our audience with was to coolly and neutrally show examples of those most affected by the law as it stands now, while highlighting fairly and honestly what it is that those who oppose any change most fear.

Kim and Andy: both were extremely willing to have Jon follow them the entire distance, however it unfolded

And if we could pull back the curtain to show just what is involved practically with an assisted death, as well as what it is like if you don’t get one, or take matters into your own hands, that might just make a difference to their understanding of the issue.

Having heard from around 150 active supporters of assisted dying, we approached numerous opponents to hear their side of things. I was surprised by how few ultimately agreed to take part. The Archbishop of Canterbury was too busy, two noted palliative care professors at first seemed willing, and then essentially ghosted me. A high profile religious opponent who had organised numerous demonstrations against a change in the law was also too busy to talk to us. A GP who had sincere views against a change in the law based on her concerns for her largely Muslim patients was forbidden by the partners in her practice from giving us an interview. Another consultant was told by her hospital trust not to put her head above the parapet.

In spite of this, we wanted to let the audience decide which side they favour most. This debate is too often driven by anecdotes, in some cases quite horrific ones, which are brandished like weapons by the warriors embedded in the trenches of either side.

On this issue, you can’t have it both ways, but what you can do is try to walk a mile in another person’s shoes, and maybe that will help you decide what you think is right in a just society that cares for its citizens. 

Complete Article HERE!

Why young people with life-limiting illnesses need special end-of-life care

Sydney’s Adolescent and Young Adult Hospice is the first of its kind in Australia, and opened its doors in February this year.

By Shalailah Medhora

Young people with serious illnesses will soon be able to have consistent end-of-life care under the new Paediatric Palliative Care Action Plan, launched by the federal government today.

It is the first road map for end-of-life care specifically targeted at infants, children, adolescents and young adults.

Currently, palliative care services are aimed at people in their 70s, 80s and older, which means that young people aren’t getting the services they need.

Assistant Health Minister Ged Kearney told Hack that the plan aims to bridge that gap.

“There always seems to have been a gap with the need for a specialist palliative care program for young people, because I think their needs are quite different.”

The plan was commissioned under the previous federal government and has been four years in the making.

“We brought together governments, key stakeholder organisations, health services, health workers, families … to build this action plan,” Ms Kearney said.

“It’s going to be out there as of today to make sure … we have national consistency, and that young people, children and infants get the best possible care they can.”

The need for youth-specific care

Earlier this year, the Adolescent and Young Adult Hospice (AYAH) opened its doors in the northern beaches of Sydney. It was the first of its kind in Australia, a facility aimed solely at providing care for young people aged 15 to 24.

“It’s a time when they’re going through emotional changes, social changes, physical changes, etc,” services manager Tayia Yeats said.

“They need to have that different area, which is purpose built for them, where they can interact with others that are going through similar challenges.”

The facility is funded through New South Wales Health, charity the North Foundation, and through donations from the community.

It has purpose-built spaces for activities young people enjoy, like a music room, games room and space to watch movies.

“It feels more like a hangout,” university student Patrick Nolan said.

Patrick is 21 and lives with muscular dystrophy. He has visited AYAH for respite care and says the most important aspect of the facility is the ability to interact with other young people.

“We’d stay up late, just messing around like any young person can do. And for me that that’s a bit of a challenge outside of this place,” Patrick explained.

Three young people who use wheelchairs pose for the camera, alongside three carers
Patrick Nolan (holding guitar) says respite care is like a “holiday from life”, and gives him the opportunity to behave like a carefree young person.

“What they want to be doing at 21 years of age is very different than what you want to be doing at 81 years of age,” nurse practitioner Sara Fleming said.

She’s been working in paediatric palliative care for over 20 years, and said the needs of a young person approaching the end of their lives can be very different to what health care professionals — and even the young person’s family — recommend.

Sara said she had a young patient once who had a life expectancy of just a few months.

“There was great distress in the family and distress experienced by the parents, because this young person, they wanted to go to a party.”

“So my job as a nurse looking after this was to go, ‘Alright, let’s get you to the party. But let’s put some things in place that are invisible to people at the party that just help everyone,'” Sara said.

Assistant Health Minister Ged Kearney said a key aspect of the paediatric palliative care plan is ensuring that the views of young people are respected.

“It’s so important to involve young people in the decision making around the end of their life. It’s their life.”

Complete Article HERE!

Unhoused Americans have few places to turn when death is near

Sherry Campbell, director of Welcome Home, stands with former resident Clint Jackson outside the hospice and medical respite home in Chattanooga, Tennessee, on April 2, 2023.

By

A few years ago, Mark Adams was diagnosed with colon cancer. His doctors didn’t want to operate, he said, because his recovery could be too risky without a clean place to recuperate. He was living on the street.

Soon, it was too late, his cancer too far along. That’s what they discovered after he moved into Welcome Home, a facility offering long-term medical respite and end-of-life care for unhoused adults.

Instead of getting better, he’ll likely live out the rest of his days there – one of a small number of places in the United States that offers unhoused people a comfortable and dignified option when they are terminally ill.

Sufficient end-of-life care in the United States is a growing problem for the general population, as America’s aging baby boomer generation needs more intensive and expensive help and supply isn’t keeping up. For many unhoused adults — who frequently lack a strong social safety net — long-term medical or hospice care are effectively inaccessible. In the absence of publicly funded solutions, private organizations and nonprofits are trying to plug the gaps, but the patchwork network of end-of-life care homes is far too limited to address the need.

On a mild spring Sunday, Adams worked on a painting in his cozy, eclectic room – filled with vinyl records, potted plants and his own art – while his friend Clint Jackson relaxed nearby. Up the hill, Standrew Parker rested on a wrought iron chair in his yard, soaking up the early afternoon sun and chatting with his new roommate, Heidi Motley. Parker, 40, and Motley, 58, are staying there while undergoing treatment for cancer.

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Mark Adams displays his artwork in his room at Welcome Home in Chattanooga, Tennessee, on April 2, 2023.

Across the country, there are a handful of facilities like Welcome Home, which sits on nearly five forested acres in Chattanooga, Tennessee. Some 1,300 miles west, there’s Denver’s Rocky Mountain Refuge for End of Life Care. Salt Lake City is home to The Inn Between, while Washington, D.C. has Joseph’s House. In Sacramento, Joshua’s House plans to open its doors this fall. Dozens more offer medical respite beds, generally for those undergoing long-term medical treatment. But outside of these organizations, experts told the PBS NewsHour that there are few other places where people experiencing homelessness can go for end-of-life or hospice care.

These facilities aren’t massive – Welcome Home has three medical respite rooms in addition to its four hospice beds, and is opening another house with an additional three rooms this month. Rocky Mountain Refuge, the smallest and newest of the group, has three beds solely for end-of-life care.

The need for those beds is great: People who are homeless are at far higher risk for many illnesses and conditions, such as heart disease. Medical research also shows that unhoused people’s bodies have often aged as if they were at least a decade older.

Being without a home is itself “a life-limiting diagnosis,” as Hannah Murphy Buc, a researcher who studies palliative and end-of-life care for people experiencing homelessness, wrote in the journal Caring for the Ages.

When someone is already in poor health, there are basic obstacles of living without a home – not having access to a fridge to store medications or the ability to secure narcotics for pain management, for instance. Some people without permanent addresses, like Adams, have reported they were denied treatment for their cancer due to the physical demands of recovery.

“Hospice and palliative care, but particularly hospice, is completely reliant on having a place to receive it,” Murphy Buc told the NewsHour.

For Adams, 51, living at Welcome Home has been life-changing, even though he often feels sick and he says he knows the cancer will likely kill him.

“I feel good here. I feel like I’m welcome here,” he said.

What we know about deaths among the unhoused

There is no official national data on where, when and how people experiencing homelessness die. According to an analysis by the National Health Care for the Homeless Council (NHCHC), at least 5,800 people died while experiencing homelessness in 2018. That’s almost certainly an undercount, and the report noted the actual number could have been anywhere between 17,500 and 46,500 deaths for that year.

With more people expected to become homeless and as that population ages, that mortality figure expected to rise, said Dr. Margot Kushel, director of UCSF’s Center for Vulnerable Populations and Benioff Homelessness and Housing Initiative.

“The truth of the matter is most of the country is entirely unprepared for this,” Kushel said.

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An inspirational sign is displayed near a cookie jar in the kitchen of Welcome Home, in Chattanooga, Tennessee, on April 2, 2023. Residents gather nightly for dinners provided by volunteers as a way of fostering community.

Local reports can help explain what’s happening currently to those who can’t access end-of-life care. Across several months in 2021, deaths among unhoused people in San Francisco occurred primarily outdoors, in places like encampments, vehicles or on the street, a report from the NHCHC found. Others died in medical facilities; motel rooms, either rented by the person or as a shelter-provided space; other people’s homes; and homeless shelters.

Similarly, in King County, Washington, about half of the people experiencing homelessness who died in 2018 perished outdoors, according to a report from the council. Only 26 of the 194 deaths occurred in residences.

A 2022 report from the Colorado Coalition for the Homeless found that among the unhoused individuals who die of so-called “natural causes,” 30 percent died in hospitals or other medical facilities, and 25 percent died outside.

“That means under a bridge, on a sidewalk, behind a bush, in a tent,” said Brother James Patrick Hall, the executive director of Rocky Mountain Refuge.

While in prior decades people experiencing homelessness may have died from acute causes, such as violence or illness, the aging population of unhoused people is now living with the chronic conditions that plague many seniors, such as COPD, heart failure, strokes and cancer.

“These folks often need a lot of personal care. They have pain issues … It’s like a disaster, to be honest,” Kushel said. “What we found in Oakland is [that] a lot of folks just died on the street, short of breath, in pain, incontinent.” Others were admitted to hospitals, and some ended up at nursing homes or acute care facilities, “but it wasn’t where they wanted to be.”

When given a choice, people overwhelmingly want to die at home, according to Murphy Buc. Death at home can lead to healing in relationships and help soothe those left behind. But even when that’s an option, it can be draining for those doing the caretaking, she noted, even with hospice nurses visiting a few times a week.

In the U.S., “we don’t do death well,” Murphy Buc said.

The problem of older people dying on the streets, in motel rooms and in cars is the ultimate result of disinvestment in affordable housing, skilled nursing care and health care, experts at the NHCHC told the PBS NewsHour.

It’s not that people who become homeless are falling through the cracks, said Barbara DiPietro, senior director of policy at the NHCHC. Instead, people are often forced into “gaping caverns” where underfunded social safety nets, such as Medicaid and public housing, fail to catch them.

An older adult who has worked as a manual laborer her entire life might have a stroke and lose employment, be unable to pay rent and end up without a home, said Caitlin Synovec, senior program manager with the council’s medical respite team. Shelters frequently can’t help people with enhanced medical needs, so they have nowhere else to turn.

The unhoused population is also disproportionately vulnerable, low-income and people of color — all groups who have historically experienced disparities and may distrust the nation’s health care and social services systems.

In addition to that added barrier, people may just not know they have medical respite and end-of-life care options, Murphy Buc said. Many of the current residents of these facilities were referred there by health care professionals or social workers, but had not previously heard of them.

‘Health care isn’t housing’

Having a home, in and of itself, can be considered a form of health care, advocates say. Those who work or volunteer at care homes sometimes witness very sick people make dramatic recoveries simply because they have a safe, comfortable and stress-free place to live.

Though each facility operates slightly differently, these homes offer more than just a physical address, providing services like palliative care, case management and transportation. Volunteers and staff can remind residents to take medicine, ask how they’re feeling, and, crucially, drive them to appointments.

Before Standrew Parker lived at Welcome Home, he would have to travel to the hospital from his mother’s house to receive five days of cancer treatment every few weeks. In addition to being an unwelcoming environment, her house was about 45 minutes away by rideshare, which cost around $60 to $70, he said. To avoid the trip back and forth, he would instead often spend his days living outside the hospital.

“We didn’t have that money. So I was in and out, just like hanging out. If I had multiple appointments for days on end there, I just [stayed outside the hospital]. I would have to or I wouldn’t get the correct shots or the treatment,” Parker said.

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Crystal Jones, nurse case manager at Joseph’s House in Washington, D.C., works at her desk on April 4, 2023.

Now, volunteers drive him to and from his treatments, and during his weeks off from chemotherapy, he recuperates in his room at Welcome Home. Beyond the care he receives, the empathy and compassion from staff and volunteers helped shift his entire perspective on healing.

“It’s like a world of difference between surviving and actually being able to get well,” he said.

A crucial goal of each facility is to establish a sense of normalcy for people whose lives have been thrown out of balance. Welcome Home serves dinner every night, where residents can gather and rib one another. People living at The Inn Between can join the resident council, which offers both community and a way to effect change, such as what times coffee is available. For the patients who recover enough, these homes can help them adjust to life outside of the facility so they can leave.

When NHCHC began their medical respite programs in the late 1980s, they were originally intended as short-term stabilization. However, some of the programs that specialize in medical respite have begun to consider incorporating end-of-life and hospice care into their models to fill the gap, said Julia Dobbins, director of medical respite at NHCHC’s National Institute for Medical Respite Care.

In contrast, patients without somewhere to go sometimes cycle between a hospital and the street, being readmitted when their problems are acute enough to warrant immediate care, and released when they’re stabilized, Murphy Buc said.

Sending still-sick people back to the streets is called “patient dumping,” and “it’s horrible,” Kushel said. But, she added, the solution can’t be that people live at a hospital for months on end until they die. That’s an inefficient use of resources, not to mention that it’s unlikely to be where a patient wants to spend the rest of her life.

Hospitals don’t want to deny people care, Kushel said. When she heard about Adams’ doctors refusing to treat his cancer while he was experiencing homelessness, she noted that his situation was not uncommon. Doctors worry about harming people who don’t have access to long-term, safe and clean care, but it doesn’t make it an easy decision.

“It happens all the time,” Kushel said. “And when you speak to the surgeons, they actually feel terrible about it.”

In the long run, even medical respite doesn’t solve the problem of where people can live, said NHCHC’s DiPietro.

“We often say housing is health care. Absolutely,” she said. “Unfortunately, health care isn’t housing.”

For many, providing medical respite or end-of-life care to people experiencing homelessness with their own limited resources can feel like a Sisyphean task.

For every person given a bed, there are countless others who need and can’t access one. Each organization can only serve their local community, leaving hundreds of people or more to die on the street nationally each year.

Beyond what the organizations receive from state and local funding, there’s little — if any — government funding for long-term medical care or end-of-life care for people with no fixed address. These organizations’ funding models are largely reliant on grants and donations, without long-term stability.

“It’s local advocates who are seeing the suffering of their community members, and so they’re creating these programs that are funded by the good of people’s hearts, and that’s it,” Dobbins said.

Rocky Mountain Refuge, which opened its doors a little over a year ago, struggles to find enough funding to stay open, Hall said. That’s an experience echoed across the country.

“One of the stresses for us here is, every year, are we going to be able to keep our doors open because of the funding?” said Kowshara Thomas, director of Joseph’s House in Washington, D.C.

Founded in 1990 during the HIV/AIDS crisis, the three-story house in a quiet residential neighborhood has served community members dying of the disease for decades. This year, however, they lost a major grant that comprised 30 percent of their revenue, which worries Thomas. Other medical respites in the D.C. area receive Medicaid funding, and larger organizations are often better positioned to write grants and secure funding. But Thomas says Joseph’s House, with only eight beds, is too small to follow suit.

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A memorial wall of former residents is displayed at Joseph’s House in Washington, D.C., on April 4, 2023.

The organization has largely, though not entirely, pivoted from end-of-life care to medical respite, something Thomas sees as both a result of better health among their community and a way for them to provide continuing care for people after they’re discharged. Joseph’s House has around 25 community members for whom they provide supportive services.

Thomas is also proud of the community that Joseph’s House anchors, with former residents coming back for meetings, social time and sometimes additional long-term or end-of-life care.

“Having a place where you can feel safe and get the support — the medical and the psychosocial support — is really what helps our community,” Thomas said. “Joseph’s House is, for some of our residents, the first time they’ve ever had family or felt like they belonged somewhere and they could just be who they are.”

Complete Article HERE!

How to Help a Loved One With Alzheimer’s or Dementia

By Victoria Pelham

Watching a loved one face dementia is often heartbreaking and disorienting.

They may forget where they are, repeat themselves, or get confused and agitated. Over time, as memory disorders damage cells in the brain and nervous system, they’ll need someone to care for them. Their speech, personality and thinking can also shift. There might even come a day when they don’t recognize you.

It’s called “the long goodbye.” While groundbreaking new medications could slow Alzheimer’s disease progression, there is still no cure for the estimated 6.7 million Americans with the condition, according to the Alzheimer’s Association.

On average, a person with dementia will live about 10 years or more after diagnosis, said Zaldy Tan, MD, director of Cedars-Sinai’s Memory and Aging Program, medical director of the Jona Goldrich Center for Alzheimer’s and Memory Disorders, and the Carmen and Louis Warschaw Chair in Neurology. Knowing what to expect can help you guide your loved one through those years with dignity.

Respect their wishes

Speak to your relative as early as possible in their illness, while they can still make decisions, about their plans and desires for end-of-life care and their finances—and honor them fully, Tan said.

“Just because they have dementia doesn’t mean they don’t have the right to live the way they choose to,” he said.

Losing independence can be one of the most challenging parts of a memory disorder.

“The trick is knowing how they liked to live before their illness,” he added.

When caring for or visiting with a relative with dementia, try to continue familiar activities they enjoyed. Did they often spend time with friends? Schedule regular meetings with one or two friends weekly or monthly. Did they have a sweet tooth? Then don’t cut out all sweets. Instead, space them out with healthier fruits and vegetables.

“Just because they have dementia doesn’t mean they don’t have the right to live the way they choose to.”

Dementia patients lose short-term memory first

In its initial stages, Alzheimer’s disease often causes patients to lose household or personal items, such as glasses, or to skip important appointments and tasks.

Families can help by offering cues, including placing labels on drawers, cabinets and doors to tell what’s inside and using calendars for medication schedules, meals, doctor’s appointments or due dates for bills.

While neurological diseases block these newer memories, old ones can resurface.

“Sometimes people revert to the past because that’s what’s accessible to them,” Tan said.

Their house and loved ones look different than they remember and therefore unrecognizable, and they might try to return to that past life in an attempt to “make sense of the world,” he explained.

Meet your loved one in their truth

There’s no need to correct them every time they believe or say something inaccurate—and it can do more harm than good.

If the person thinks they’re going to see a friend who died 10 years ago for a poker party, it will just upset and confuse them to mention the death. They’ll also likely forget within a few minutes.

“What does it accomplish?” Tan said. “They may not have the capacity to understand. Their reality is different from yours.”

Play along or change the topic, he suggested.

Use simple, direct and slow communication with yes and no questions (asked one at a time) and eye contact—in a quiet place with few distractions, the Alzheimer’s Association recommends. Visual and sensory signals like touch or pointing can also help you engage.

Complete Article HERE!

‘I have my life in my own hands’

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

By Amy Woodyatt

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A love for life

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

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

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

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

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

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

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

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

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

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

An ongoing conversation

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

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

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

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

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

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

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

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

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

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

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

Rapaport hopes the film will keep conversations around death ongoing.

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

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

Thinking of Becoming a Guardian?

What you should consider before you agree to be responsible for an incapacitated loved one

By Patty Blevins

What you should consider before you agree to be responsible for an incapacitated loved one

If you haven’t had any experience with guardianship for adults with dementia, it’s likely you don’t understand just how complex it is. You are not alone. Many family members of the estimated 6.5 million dementia patients in the U.S. struggle to understand if it is an option for their loved one.

Many more people will face that decision because the number of people with dementia will grow to 14 million by 2060, according to Centers for Disease Control estimates.

An adult son making food for his mother with dementia. Next Avenue
In determining whether to place someone under a guardianship and curb their legal rights, the court may call on a geriatrician or psychiatrist to assess the person’s functional behavior, cognitive function, disabling conditions and ability to meet their essential needs.

The simplest definition of guardianship is the position of being responsible for someone else. State courts appoint a guardian to make decisions for another person if the court finds the person to be incapacitated or unable to make safe, reasonable decisions for themselves, according to National Academy of Elder Law Attorneys (NAELA).

The simplest definition of guardianship is the position of being responsible for someone else.

Guardianship is serious business. People placed under guardianship, who are called wards, may lose their independence in making decisions about their finances, legal issues and health care. According to the U.S. Department of Justice, full guardianship can control whether wards can vote, who they may marry, where they live and if they can make end-of-life decisions for themselves.

An article in the American Journal of Alzheimer’s Disease and Other Dementias explains that the two tasks that are regularly evaluated in determining capacity are an individual’s ability to manage personal finances and take medications as prescribed.

Choosing and Monitoring Guardians

In determining whether to place someone under a guardianship and curb their legal rights, the court may call on a geriatrician or psychiatrist to assess the person’s functional behavior, cognitive function, disabling conditions and ability to meet their essential needs. A geriatrician is a specialty doctor who treats people over 65 with a focus on diseases like dementia that primarily affect this age group.

The National Academy of Elder Law Attorneys says guardianships offer safeguards. Guardians, for example, must periodically update the court on the ward’s finances and health status. Even then, courts have the authority to initiate unscheduled reviews of guardians’ decisions about their wards’ finances, property and health care.

Guardianship, “when properly used,” is a beneficial method to protect an incapacitated person for whom no other means are available to assist with informed decision making, the organization says.

That describes the original intent of guardianship, but it assumes the guardian is honest and accountable. Unfortunately, this is not always the case. Ample examples of abuse are documented by researchers and prosecutors.

An article in the Journal of the American Geriatrics Society first published in April 2022, sought to make a quantitative evaluation of guardianship in the United States but the authors found little consistent standards and data collection regarding the impact on patient care and the quality of life of people subject to guardianship.

Impediments to Oversight

The inconsistencies included fundamental matters, including the following:

  • The scope of the guardian’s duties.
  • Minimum standards for guardians. As of 2020, there were two states that had yet to require a background check.
  • Determination of incapacity. In the past, this decision often defaulted to a physician based solely on a psychiatric or medical diagnosis.
  • Regular independent reviews of the ongoing necessity of guardianship.
  • Educational requirements for guardians. Guardians are often required to serve in many roles that they may have minimal or no training. The National Guardianship Association (NGF) partnered with the Center for Guardianship Certification (CGC) to standardized educational content and offer certification.
  • Other drawbacks of guardianship included:
    • Once guardianship is assigned, there is greater tendency for the person to become lost to follow up. People who have been labeled as incompetent or incapacitated have limited ability to advocate for themselves, contact an attorney or access funds for court proceedings.
    • There is a greater tendency to assign full guardianship instead of less restrictive alternatives.

    Recent Guardianship Law

    In 2017, the Uniform Law Commission, a non-profit association that provides states with model legislation to clarify and standardize laws across jurisdictions , released The Uniform Guardianship Conservatorship and Other Protective Arrangements Act to encourage the “trend toward greater independence for persons under guardianship.”

    “Over 40% of the American population has never discussed their wishes for end-of-life care with loved ones.”

    The act addresses many of the previous inconsistences and proposes solutions going forward. So far, seven states have enacted the model guardianship statute in full and many more have adopted parts of it, according to the National Center on Elder Abuse.

    Alternatives to Guardianship

    There are multiple alternatives to guardianship but Americans need to start talking to each other. “Over 40% of the American population has never discussed their wishes for end-of-life care with loved ones,” according to the article in the Journal of the American Geriatrics Society. These measures should begin at the first sign of memory loss or preferably when getting ready for retirement to delay or prevent guardianship.

    • Tell your family your wishes and write them down in an advanced directive (living will and health care power of attorney).
    • Create a value history. A value history is based on values and beliefs and it provides a person’s future care choices.
    • Evaluate limited (partial) guardianship as an alternative to full guardianship. In this case, guardianship is granted only over the areas for which the person lacks the capacity for rational decision making (finances).
    • Designate a durable power of attorney and list two or three backup candidates for this important position if the first choice is not available. This agent could be responsible for financial, legal and personal matters.
    • Investigate care management services. Care managers are usually nurses or social workers that are trained to identify and provide for a client’s medical, psychosocial and financial needs.
    • Find a payee. Many organizations offer money management services which serve as a payee for vulnerable clients.
    • Enlist the help of your primary care doctor. You may have to teach them about guardianship and the role you would like them to play, but they could become your greatest asset.

    Guardianship as the Only Answer

    Appointing a family member or friend as your guardian often is the ideal solution. But sometimes a court-appointed guardian is the only answer. My own experience is an example.

    I felt a sense of relief at the appointment of a guardian outside the family. It relieved us of the possibility of having to tell him that he had to stay in a nursing home for his own safety.

    My father was diagnosed with multi-infarct dementia in 2016. The disease transfigured him from an intelligent, robust, fun-loving father into, let’s say, something different. My mother already had passed away, and my three siblings and I agreed that his guardian should be the same sibling who was listed as his Health Care Power of Attorney.

    That legal document lets you state your medical wishes and appoint another person to make sure those wishes are followed if you are incompetent or no longer able to make your own health care decisions.

    Release, Then Relief

    We all arrived at the courthouse and my father surprised all of us by saying he didn’t want my sister, who had his Health Care Power of Attorney, to be his guardian. Another court hearing was scheduled, at which he agreed to have the court appoint a lawyer to be his guardian.

    I felt a sense of relief at the appointment of a guardian outside the family. It relieved us of the possibility of having to tell him that he had to stay in a nursing home for his own safety. We would not be the ones sifting through his financial records to explain his debt and explain that his mortgage was being foreclosed on. We could preserve a few remnants of a familial relationship and focus on being supportive.

    The guardianship duties performed by the appointed attorney were far from flawless. But, overall, they served as the best answer for the situation at the time.

Complete Article HERE!

End of Life Care for People with Developmental Disabilities

Why talking about this taboo subject with your loved one early on is important

Charlotte Woodward and her mom, Darcy Woodward

By Beth Baker

Planning for our own death or that of a loved one is difficult. According to a survey by The Conversation Project, 92% of us think it’s important to discuss our end-of-life wishes.Yet only one-third of us do so. 

For those with intellectual and developmental disabilities (IDD), those conversations happen even less frequently.

“Death in general is still a taboo subject,” says Dr. Kyle Sue, at the University of Alberta, who treats people with developmental disabilities of all ages. “For people with a disability, health practitioners don’t know how to bring it up, or they don’t know how much the person will understand. There’s a level of discomfort in trying to include them.”

IDD includes conditions that appear before the age of 18 that affect physical development, learning, language or behavior. Some conditions begin in utero, such as Down syndrome which is caused by an extra chromosome. Others are from a birth injury, such as cerebral palsy. One common disability, Autism Spectrum Disorder (ASD), likely has multiple causes and may not appear until after age one.

“I’ve thought about the end of my life. I know for a fact that I won’t be in denial of it… I would flat out accept it. Maybe I’ll give my body to science.”

An estimated 1-3% of Americans have IDD conditions, according to Margaret Nygren, CEO of the American Association on Intellectual and Developmental Disabilities (AAIDD). Improvements in heart surgery and other advances have greatly extended the lives of many.

Most notably, the average life expectancy for people with Down syndrome is now 61, compared to just 25 years old in 1983. Children with cerebral palsy are also living longer. A study in BMC Neurology found that 80% of children with mild CP will live to be 58 or beyond. Although this is good news, it presents new challenges as individuals outlive their parents or other caregivers.

Diseases associated with aging, such as Alzheimer’s disease, are becoming more common, especially for those with Down syndrome. Some 30% of people with Down syndrome in their 50s have Alzheimer’s, and 50% of those in their 60s.

Having conversations about end-of-life wishes is important while the individual can communicate.

Nothing About Them Without Them

Charlotte Woodward defies stereotypes regarding people with Down syndrome and other disabilities. As is common in Down syndrome, she was born with a heart defect and has had four open-heart surgeries including a heart transplant — one of the few people with Down syndrome to receive an organ transplant.

Woodward studied sociology at George Mason University, concentrating on discrimination against people with disabilities in the medical system, and she is now only the third person with Down syndrome to be a registered lobbyist. She works to advance the Charlotte Woodward Organ Transplant Discrimination Prevention Act, introduced by Washington State Republican representative Jaime Herrera Beutler and California Democrat Katie Porter.

“Actually, the most respectful thing you can do is to give them the opportunity to express their wishes.”

“I’m still in my thirties. I want to live my life to the fullest,” says Woodward, who is Education Programs Associate with the National Down Syndrome Society. Still, “I’ve thought about the end of my life. I know for a fact that I won’t be in denial of it. I won’t be angry or bargain. I would flat out accept it. Maybe I’ll give my body to science. And I would like to get my last will and testament in place and advance medical directive as well.”

Her mother, Darcy Woodward, 58, finds such conversations difficult. “There’s definitely a concern about the future among parents of children with disabilities. We’re trying to make sure things are in place to protect our children who will hopefully have long healthy lives. I try not to think about it, but I know it’s important.”

In the past, someone like Charlotte would not have a seat at the table when it came to planning her health care. But in the 1980s that began to change, explains Leigh Ann Kingsbury, a North Carolina gerontologist who wrote one of the first guides on end-of-life planning for people with IDD.

People with disabilities who receive Medicaid-funded services must have an annual plan for their care. “Up until the ’80s these planning processes were really perfunctory — professionals getting together and saying ‘here is what we think is best for Susie Jo’ in a highly patronizing, not culturally relevant manner,” says Kingsbury.

That began to change when advocates demanded that their voices be included. In the 1990s, the slogan “nothing about us without us” became a rallying cry in the disability community.

Advanced Directives

“People with IDD can and do create advanced directives for their care,” says Nygren. “The thing that’s different is they need some help discussing and thinking through the options, the way people without IDD can do it independently.”

But many medical professionals and caregivers are reluctant to include people with IDD in decision making. “I never met a person with IDD who didn’t understand the cycle of life,” says Nygren. “People aren’t automatically comfortable about it, but there’s awareness. People want autonomy and control over decisions that affect them. Actually, the most respectful thing you can do is to give them the opportunity to express their wishes.”

A person smiling at home. Next Avenue, developmental disabilities, end of life care
Charlotte Woodward

According to Nygren, the number of those with extreme intellectual limitations who cannot understand or speak is small, compared to the overall population of people with IDD. Even then, people who know them well know their likes and dislikes that can help inform care.

Dr. Brian Chicoine has been medical director of the Adult Down Syndrome Center in Illinois since 1992. The center was the first clinic to serve adults with the disability. He cautions that there is nuance about how and when you talk about death. “Our patients are so concrete. They can become so focused on the fact that they’re dying, they have trouble living,” he explains.

Many have a different understanding of time, he adds. For example, the parents of a patient bought cemetery plots for themselves and their son. “This was a very bright guy, but for the next five years we dealt with his depression,” as the young man focused on his death which was far in the future. “So we have to be careful with these conversations,” says Chicoine.

Barriers in the Medical System

Whether or not you have disabilities, having a good relationship with your primary care physician is important for having your choices honored at the end of life. But finding a doctor can be tough for those with IDD. Physicians often do not want to treat people with disabilities. An article in the October 2022 issue of Health Affairs entitled, “I Am Not the Doctor For You” about three focus groups of physicians across disciplines and regions of the U.S. found considerable reluctance and outright prejudice towards people with disabilities.

“Some participants … revealed negative attitudes … and commonly used outdated or ableist language (for example, ‘mentally retarded’),” according to the study. Some admitted that they had turned away people with disabilities from their practice. One reason is time constraints. Explaining medical issues to someone with an intellectual disability takes more time, yet doctors are reimbursed for a 10-minute appointment even if it takes 30.

“Even a person who is very, very ill or who has a psychiatric illness or Down syndrome can say ‘Don’t do this to me.'”

Pervasive “ableism” is common including in the medical profession. Many providers assume that a person with IDD has a poor quality of life. Such assumptions can have serious consequences. An article in a recent Journal of the American Board of Family Medicine entitled, “Ableism at the Bedside,” found that people with IDD had a higher risk of mortality from COVID-19 compared to others with similar medical problems.

In one case, ICU physicians repeatedly pushed for a “do not resuscitate” order to be in place for a woman with Down syndrome. Her primary care doctor and family refused. The woman went on to a full recovery.

Medical schools and residency programs offer little training to help providers feel more comfortable treating this population.

Sue begins end-of-life conversations when a patient he’s followed for years develops more serious symptoms.

“When I bring it up, I’m not saying, ‘Okay let’s talk about dying.’ I begin by asking what are they seeing? How is your child compared to ten years ago? How are things at home? For everyone who has serious health conditions, we do need to talk about planning for the future. As conditions change, it’s best to be prepared well ahead of time, rather than making difficult decisions in a crisis. I’ve found that families are quite receptive,” Sue says.

Palliative Care

If a person ends up in the ICU, communication can be very challenging. Palliative care specialists must assess their level of pain, for example, if they cannot converse. Treatment choices can be hard to determine, especially if there is no guardian or caregiver who knows the patient well. Guardians are typically family members, even if they have not been living with the patient. The staff of group homes who may know the patient best are usually not included in hospital decisions.

“No matter who the patient is, we always want to get as much information from a person based on what they do and don’t want, what they do or don’t value,” says 2021 Next Avenue Influencer in Aging, Dr. Jessica Zitter, a specialist in both critical care and palliative medicine at a public hospital in Oakland, California, and author of “Extreme Measures — Finding a Better Path to the End of Life.”

“The first principle is to try to elicit from a person the things that are important to them. Bring that information into their health care plan and medical decisions. Even a person who is very, very ill or who has a psychiatric illness or Down syndrome can say ‘Don’t do this to me.'”

Ultimately with a life-threatening illness, no matter the patient’s disability, “What we really need to be saying is, we’re not going to abandon you. We want to do what you want until the last moment. We’ll hold your hand,” says Zitter.

Supported Decision Making

Supported decision making is a process that helps people with IDD make decisions about important life issues. A team of family members, friends, neighbors, professionals or volunteers manages discussions to help the individual decide things about jobs, marriage or housing.

The process can also be used for end-of-life planning.

Darcy Woodward is exploring how to disband her guardianship and transition to supported decision making. She recognizes that Charlotte can make her own decisions. “I wouldn’t want guardianship to transfer to a stranger who would disregard Charlotte,” she says.

For parents of adults with IDD, such planning is critical, which is why The National Down Syndrome Society plans to publish an end-of-life guide. “It’s really about proactively planning for end-of-life care,” says Rachel Grimm, manager of health programs, aging and caregiving for NDSS.

“We want readers to recognize that having a backup plan and planning for the future are so important for happiness and sustainability. We’re encouraging families to find a lawyer to walk them through,” Grimm says.

Complete Article HERE!