‘Financial Ruin Is Baked Into the System’

— Readers on the Costs of Long-Term Care

Readers blamed the predominantly for-profit nature of American medicine and the long-term care industry for systematically depleting the financial resources of older people.

Thousands of people shared their experiences and related to the financial drain on families portrayed in the Dying Broke series.

By Jordan Rau and Reed Abelson

Thousands of readers reacted to the articles in the Dying Broke series about the financial burden of long-term care in the United States. They offered their assessments for the government and market failures that have drained the lifetime savings of so many American families. And some offered possible solutions.

In more than 4,200 comments, readers of all ages shared their struggles in caring for spouses, older parents and grandparents. They expressed their own anxieties about getting older and needing help to stay at home or in institutions like nursing homes or assisted-living facilities.

Many suggested changes to U.S. policy, like expanding the government’s payments for care and allowing more immigrants to stay in the country to help meet the demand for workers. Some even said they would rather end their lives than become a financial burden to their children.

Many readers blamed the predominantly for-profit nature of American medicine and the long-term care industry for depleting the financial resources of older people, leaving the federal-state Medicaid programs to take care of them once they were destitute.

“It is incorrect to say the money isn’t there to pay for elder care,” Jim Castrone, 72, a retired financial controller from Placitas, N.M., commented. “It’s there, in the form of profits that accrue to the owners of these facilities.”

“It is a system of wealth transference from the middle class and the poor to the owners of for-profit medical care, including hospitals and the long-term care facilities outlined in this article, underwritten by the government,” he added.

But other readers pointed to insurance policies that, despite limitations, had helped them pay for services. And some relayed their concerns that Americans were not saving enough and were unprepared to take care of themselves as they aged.

“It was a long, lonely job, a sad job, an uphill climb.”
Marsha Moyer

What other nations provide

Other countries’ treatment of their older citizens was repeatedly mentioned. Readers contrasted the care they observed older people receiving in foreign countries with the treatment in the United States, which spends less on long-term care as a portion of its gross domestic product than do most wealthy nations.

Marsha Moyer, 75, a retired teaching assistant from Memphis, said she spent 12 years as a caregiver for her parents in San Diego County and another six for her husband. While they had advantages many don’t, Ms. Moyer said, “it was a long, lonely job, a sad job, an uphill climb.”

In contrast, her sister-in-law’s mother lived to 103 in a “fully funded, lovely elder care home” in Denmark during her last five years. “My sister-in-law didn’t have to choose between her own life, her career and helping her healthy but very old mother,” Ms. Moyer said. “She could have both. I had to choose.”

Birgit Rosenberg, 58, a software developer from Southampton, Pa., said her mother had end-stage dementia and had been in a nursing home in Germany for more than two years. “The cost for her absolutely excellent care in a cheerful, clean facility is her pittance of Social Security, about $180 a month,” she said. “A friend recently had to put her mother into a nursing home here in the U.S. Twice, when visiting, she has found her mother on the floor in her room, where she had been for who knows how long.”

A portrait of Birgit Rosenberg, who wears a knit red sweater and sits on a chair facing the camera and looking directly at the viewer, with bushes and trees outside the window behind her.
Birgit Rosenberg, 58, of Southampton, Pa.

Brad and Carol Burns moved from Fort Worth, Texas, in 2019 to Chapala, Jalisco, in Mexico, dumping their $650 a month long-term care policy because care is so much more affordable south of the border. Mr. Burns, 63, a retired pharmaceutical researcher, said his mother lived just a few miles away in a memory care facility that costs $2,050 a month, which she can afford with her Social Security payments and an annuity. She is receiving “amazing” care, he said.

“As a reminder, most people in Mexico cannot afford the care we find affordable and that makes me sad,” he said. “But their care for us is amazing, all health care, here, actually. At her home, my mom, they address her as Mom or Barbarita, little Barbara.”

Insurance policies debated

Many, many readers said they could relate to problems with long-term care insurance policies, and their soaring costs. Some who hold such policies said they provided comfort for a possible worst-case scenario while others castigated insurers for making it difficult to access benefits.

“They really make you work for the money, and you’d better have someone available who can call them and work on the endless and ever-changing paperwork,” said Janet Blanding, 62, a technical writer from Fancy Gap, Va.

Derek Sippel, 47, a registered nurse from Naples, Fla., cited the $11,000 monthly cost of his mother’s nursing home care for dementia as the reason he bought a policy. He said he pays about $195 a month with a lifetime benefit of $350,000. “I may never need to use the benefit(s), but it makes me feel better knowing that I have it if I need it,” he wrote. He said he could not make that kind of money by investing on his own.

“It’s the risk you take with any kind of insurance,” he said. “I don’t want to be a burden on anyone.”

Pleas for more immigrant workers

One solution that readers proposed was to increase the number of immigrants allowed into the country to help address the chronic shortage of long-term care workers. Larry Cretan, 73, a retired bank executive from Woodside, Calif., said that over time, his parents had six caretakers who were immigrants. “There is no magic bullet,” he said, “but one obvious step — hello people — we need more immigrants! Who do you think does most of this work?”

Victoria Raab, 67, a retired copy editor from New York, said that many older Americans must use paid help because their grown children live far away. Her parents and some of their peers rely on immigrants from the Philippines and Eritrea, she said, “working loosely within the margins of labor regulations.”

“These exemplary populations should be able to fill caretaker roles transparently in exchange for citizenship because they are an obvious and invaluable asset to a difficult profession that lacks American workers of their skill and positive cultural attitudes toward the elderly,” Ms. Raab said.

“For too many, the answer is, ‘How can we hide assets and make the government pay?’”
Mark Dennen

Federal fixes sought

Others called for the federal government to create a comprehensive national long-term care system, as some other countries have. In the United States, federal and state programs that finance long-term care are mainly available only to the very poor. For middle-class families, sustained subsidies for home care, for example, are fairly nonexistent.

“I am a geriatric nurse practitioner in New York and have seen this story time and time again,” Sarah Romanelli, 31, said. “My patients are shocked when we review the options and its costs. Medicaid can’t be the only option to pay for long-term care. Congress needs to act to establish a better system for middle-class Americans to finance long-term care,” she said.

John Reeder, 76, a retired federal economist from Arlington, Va., called for a federal single-payer system “from birth to senior care in which we all pay and profit-making removed.”

A portrait of John Reeder, who gazes out a window he sits by in his home, wearing a blue sweater.
John Reeder, 76, at home in Arlington, Va.

Mark Dennen, 69, from West Harwich, Mass., said people should save more rather than expect taxpayers to bail them out. “For too many, the answer is, ‘How can we hide assets and make the government pay?’ That is just another way of saying, ‘How can I make somebody else pay my bills?’” he said, adding: “We don’t need the latest phone/car/clothes, but we will need long-term care. Choices.”
<h2″>Questioning life-prolonging procedures

A number of readers condemned the country’s medical culture for pushing expensive surgeries and other procedures that do little to improve the quality of people’s few remaining years.

Dr. Thomas Thuene, 60, a consultant in Roslindale, Mass., described how a friend’s mother who had heart failure was repeatedly sent from the elder care facility where she lived to the hospital and back, via ambulance. “There was no arguing with the care facility,” he said. “However, the moment all her money was gone, the facility gently nudged my friend to think of end-of-life care for his mother. It seems the financial ruin is baked into the system.”

Joan Chambers, 69, an architectural draftsperson from Southold, N.Y., said that during a hospitalization on a cardiac unit she observed many fellow patients “bedridden with empty eyes,” awaiting implants of stents and pacemakers.

“I don’t want to be a burden on anyone.”
Derek Sippel

“I realized then and there that we are not patients, we are commodities,” she said. “Most of us will die from heart failure. It will take courage for a family member to refuse a ‘simple’ procedure that will keep a loved one’s heart beating for a few more years but we have to stop this cruelty.

“We have to remember that even though we are grateful to our health care professionals, they are not our friends, they are our employees and we can say no.”

One physician, Dr. James D. Sullivan, 64, from Cataumet, Mass., said he planned to refuse hospitalization and other extraordinary measures if he suffered from dementia. “We spend billions of dollars, and a lot of heartache, treating demented people for pneumonia, urinary tract infections, cancers, things that are going to kill them sooner or later, for no meaningful benefit,” Dr. Sullivan said. “I would not want my son to spend his good years, and money, helping to maintain me alive if I don’t even know what’s going on,” he said.

Thoughts on assisted dying

Others went further, declaring they would rather arrange for their own deaths rather than suffer in greatly diminished capacity. “My long-term care plan is simple,” said Karen D. Clodfelter, 65, a library assistant from St. Louis. “When the money runs out I will take myself out of the picture.” Ms. Clodfelter said she helped care for her mother until her death at 101. “I’ve seen extreme old age,” she said, “and I’m not interested in going there.”

Some suggested that assisted dying should be a more widely available option in a country that takes such poor care of its elderly. Meridee Wendell, 76, from Sunnyvale, Calif., said: “If we can’t manage to provide assisted living to our fellow Americans, could we at least offer assisted dying? At least some of us would see it as a desirable solution.”

Complete Article HERE!

‘Nobody speaks about this’

— Diana Rigg made impassioned plea for assisted dying law before death

Diana Rigg photographed in 2019, the year before her death.

In a recording in 2020, the actor made a case for giving ‘human beings true agency over their bodies at the end of life’

By

Diana Rigg made an impassioned case to legalise assisted dying in a message recorded shortly before her “truly awful” and “dehumanising” death from cancer three years ago.

The actor’s statement calling for a law that gives “human beings true agency over their own bodies at the end of life”, published today in the Observer, adds to the ongoing debate on assisted dying, with MPs expected to publish recommendations to the government within weeks.

It was released by her actor daughter, Rachael Stirling, who promised the star of The Avengers TV series and Game of Thrones that she would share the message with the public.

In the recording, Rigg says: “They don’t talk about how awful, how truly awful the details of this condition are, and the ignominy that is attached to it. Well, it’s high time they did. And it is high time there was some movement in the law to give choice to people in my position. This means giving human beings true agency over their own bodies at the end of life. This means giving human beings political autonomy over their own death.”

Rigg taped her statement on a cassette recorder given to her by her son-in-law, the musician Guy Garvey.

Vividly describing the last weeks of her illness, she says: “I have cancer, and it is everywhere, and I have been given six months to live. And I’m not frightened of describing the least attractive aspects of my condition: the fact of the matter is I have lost control of my bowels. This, to me, is quite the most dehumanising thing that can happen.

“Yet again we found ourselves in the bathroom this morning, my beloved daughter and I, half laughing and half crying, showering off together, and it was loving, and it was kind, but it shouldn’t happen. And if I could have beamed myself off this mortal coil at that moment, you bet I would’ve done it there and then.

“Any palliative nurse will tell you, in the end, patients often starve themselves as a means to an end. The body becomes weaker, the organs shut down. It’s not that they want to die that way. It’s how they take control.

Actors Diana Rigg and daughter Rachael Stirling at the National Theatre, London, in 2005.
Actors Diana Rigg and daughter Rachael Stirling at the National Theatre, London, in 2005.

“Nobody speaks about this.” They talk about the pain and the dread, she says, but not the awful details of the condition.

Currently, it is illegal in the UK for anyone to assist in another’s death.

Explaining why she is recording her views, Rigg – who was diagnosed with lung cancer in March 2020 and died, aged 82, that September – says: “I’ve always spoken out. I spoke out when I was very young, doing The Avengers, and learned I was earning less than the cameraman. I spoke for peace in Vietnam, in Northern Ireland. I marched for peace in Iraq. I stood up for what is right. I speak my mind. I always have.
“If I see something is unfair, I’ll do my best to address it. I think this is unfair. I think it is unfair that I don’t have a choice. I think it is unfair that other people don’t have a choice.”

Rigg is the latest high-profile figure whose views on the issue have become known. Prue Leith, the restaurateur and Great British Bake Off judge, has been a passionate advocate for assisted dying after watching her brother David die from bone cancer in 2012, when he “endured weeks of agony”.

Broadcaster Jonathan Dimbleby and his brother Nicholas, a sculptor who was diagnosed with motor neurone disease earlier this year, discussed their shared belief in the right to die on BBC Radio 4 recently.

According to an Ipsos Mori poll in July, 65% of people in the UK believe it should become legal for a doctor to assist an adult of sound mind with less than six months to live to voluntarily end their own life, subject to high court confirmation.
The issue is currently being scrutinised by a select committee of MPs, which has heard evidence from both sides of the debate. Its recommendations to the government are expected to be published in the new year.

The assisted dying organisation Dignitas, based in Switzerland, told the committee that it has helped 540 British people kill themselves over the past 20 years.

A private member’s bill on assisted dying in England and Wales was introduced into the House of Lords by Molly Meacher in May 2021 and passed its second reading, but failed to progress before the end of the parliamentary session. Assisted-dying laws are progressing in Scotland, the Isle of Man and Jersey.

Legislation that allows the choice for terminally ill, mentally competent adults is in place in Australia, New Zealand and 10 US states. Broader laws are in place in Switzerland, Spain, Austria, the Netherlands, Belgium, Luxembourg, Canada and Colombia. Campaigners against assisted dying warn that legalising the practice in the UK would increase the risk of coercion and elder abuse. In Canada, where the law recently changed, there have been reports of people being offered help to die if they do not have adequate access to social support and care.

Alistair Thompson, spokesperson for the Care Not Killing campaign group, believes that as more people hear about what is happening in other countries, the more danger they see in changing the law. “There’s been a slow, but growing, shift in public mood. People realise it’s the least well-off in society, the poorest, those who have no voice, who are much more likely to be pressured into ending their lives.

“Where there are people who are experiencing pain, we should be treating their pain. When someone’s feeling suicidal we should be supporting and helping them, not giving them the keys to the drugs cabinet.”

Sarah Wootton, the chief executive of Dignity in Dying, a charity that supports a change in the law, said: “The Canadian law is much, much broader than the one we’re calling for, which is the one in place in Australia, America and New Zealand. I think the most dangerous thing you can do is nothing. A blanket ban is far more dangerous than an upfront regulation of what’s going on, with transparency and scrutiny of the status quo.”

Some people’s suffering is beyond the reach of even good palliative care, she added, but it shouldn’t be “an either, or” – there should be more investment in palliative care as well as the legalisation of assisted dying.

“We need to make end-of-life care fit for the 21st century and that must include having the choice of accelerating what is to somebody an unbearable dying process. It’s a patient-powered movement that will force that change ultimately.”

Referencing high-profile supporters of the campaign, she said: “They’re giving a voice to the thousands of people up and down the country, from all walks of life, who are suffering. Even if people are fortunate enough to be able to pay the £15,000 to get to Switzerland, it’s just no substitute to dying at home surrounded by loved ones.”

Complete Article HERE!

Who gets to decide when you die?

— States consider medical aid in dying

More than a dozen states introduced bills to legalize the practice in 2023, which observers say can improve end-of-life systems and processes for families and health care providers.

by Kaitlyn Levinson

Death is a taboo topic, especially when someone dies of their own choosing. But there are growing numbers of people suffering with incurable illness who wish to die peacefully, and recently, more states are turning to aid in dying programs so individuals can have more end-of-life health care options.

Last year, Washington saw the highest number of patients—446—die under the state’s medical aid in dying program, up from 387 in 2021.

An increase in the number of people interested in and requesting medication to die indicates states’ need to reevaluate their approach to end-of-life programs, said Arthur Caplan, director of the Division of Medical Ethics at New York University’s Grossman School of Medicine’s Department of Population Health.

Medical aid in dying programs offer a terminally ill adult patient the option to end their life with a prescribed medication if their health conditions severely impact their quality of life, such as living with chronic or unbearable pain and discomfort. Research shows that cancer patients are the most common users of medical aid in dying.

Medical aid in dying is legal in 10 states—California, Colorado, Hawaii, Maine, Montana, New Jersey, New Mexico, Oregon, Vermont and Washington—and the District of Columbia. All states require patients to be more than 18 years old and show no signs that a mental health disorder or intellectual disability could impact their end-of-life decision-making.

New Mexico was the latest state to authorize medical aid in dying in 2021. The new law requires that eligible adult patients must have a prognosis that their illness will result in death within six months, and they must be evaluated by a mental health professional who can assess their mental capacity to pursue medical aid in dying.

As policymakers and the public grow older, states’ interest in legalizing the practice will continue gaining momentum, Caplan said. The number of adults 65 and older, for instance, is projected to swell to 95 million individuals, or 23% of the whole U.S. population, by 2060.

This year, at least 17 states have introduced bills to legalize medical aid in dying, including Florida, Indiana and Maryland, where policymakers and advocates believe the bill will finally pass in 2024 after years of trying.

And in states where the procedure is already legal, policymakers continue to expand access to medical life-ending services. Oregon and Vermont, for instance, eliminated in-state residency requirements for patients seeking medical help with dying. Vermont also repealed a requirement for health care providers to wait 48 hours before writing a prescription for a patient requesting aid in dying.

Hawaii and Washington now allow advanced practice registered nurses to prescribe lethal medications, with the latter extending permission for physician assistants, as well.

While opponents claim medical aid in dying could open up the chance for health care providers or insurers to coerce patients into using the service to increase profits, Caplan said there is little evidence to suggest that happens in states where it is authorized.

Data also shows that the number of patients who do seek medical aid in dying is miniscule. In Oregon, for example, the percentage of patients who used the service in 2022 accounted for less than 0.6% of total deaths in the state, according to a report by the Oregon Health Authority. And of the 432 patients who received end-of-life prescriptions, 84 did not take the medication or later died of other causes.

Oregon was the first state to legalize medical aid in dying in 1994 with its Death with Dignity Act. But research suggests the state’s ground-breaking law has also resulted in more careful evaluation of end-of-life options and efforts to reduce barriers to hospice care.

Medical aid in dying laws can allow medical practitioners to give patients more control over their health care to alleviate the stress and trauma associated with death, said Kim Callinan, president and CEO of Compassion & Choices, a nonprofit advocacy group for patient autonomy of end-of-life planning.

The one thing guaranteed in life is dying, she said. And when policymakers, patients and advocates actively acknowledge that, they can work to improve end-of-life systems and processes.

Complete Article HERE!

Regulating Physician-Assisted Death

— Scholar analyzes the relation between federal regulation and assisted death initiatives.

By

Following the U.S. Supreme Court’s decision in Dobbs v. Jackson Women’s Health Organization, when the Court removed constitutional protections recognizing the right to abortion, debates around bodily autonomy have grown increasingly contentious. Notably absent in many of these debates, however, is reference to the highly divisive right to die.

According to a 2001 book chapter by Margaret P. Battin of the University of Utah, an absence of attention to the right to pursue physician-assisted suicide, or “active euthanasia,” obscures the “charged and polarized” nature of the right, with the very model of end-of-life issues in the United States at risk of substantial change.

Assisted death and other end-of-life issues gained traction in the late 1960s as medical patients and other disfavored groups fought alongside the proponents of the civil rights movement to pursue greater political and legal recognition. Battin claims that the debate over patients’ control of their deaths and the associated process of dying skyrocketed with the passage of the California Natural Death Act of 1976, which established patients’ right to determine, while still competent, the treatments they did not want to pursue as their condition deteriorated.

Proponents of assisted death initially pursued a populist strategy, Battin explains. Opponents, alternatively, partnered with existing organizations, including the Catholic Church and the American Medical Association, to speak out against the legalization of physician-assisted death with the apparent backing of authoritative institutions.

Battin contends that the involvement of these large institutions escalated the debate and led both sides to pursue state-level initiatives, ultimately shifting the focus of the debate from public opinion to state law.

Proponents initiated referenda in numerous states, including Washington, California, Oregon, Michigan, and Maine, seeking to allow physicians to provide terminally ill patients with lethal prescriptions upon request. Battin explains that, with active efforts from opponents to challenge the passage of state-assisted suicide laws, the referenda failed by narrow margins in all states but Oregon, where Measure 16 passed twice in 1994 and again in 1997, when the state enacted the Death with Dignity Act. Since then, 11 states have passed “right to die” laws.

When cases came before the U.S. Supreme Court, the Court ruled unanimously to uphold the constitutionality of state statutes prohibiting suicide assistance. Although courts seemingly ruled in the opponents’ favor, Battin argues that these rulings created a “laboratory of the states,” through which some states could legalize assisted death and others could prohibit it, thereby allowing policymakers to gain greater insight into the relative benefits and drawbacks of each approach.

Viewing the Supreme Court’s decision as inadequate and Oregon’s Death with Dignity Act as “the domino that would let many others fall,” Battin describes how opponents then sought to overrule state law by imposing new federal regulations.

After the federal Justice Department declined to prohibit physicians from using scheduled drugs for the purpose of assisting death, opponents unsuccessfully pursued congressional measures in the form of the Pain Relief Promotion Act of 1999 (PRPA). As Battin explains, the PRPA would have amended the Federal Controlled Substances Act to prevent the distribution of controlled substances “for the purpose of causing, or assisting in causing, the suicide or euthanasia of any individual.”

According to Battin, this proposed legislation would have directly challenged the Death with Dignity Act’s legalization of lethal prescriptions by targeting not the physicians or patients themselves, but the very drugs that would allow for a painless death. The legislation never passed, partly because, Battin contends, palliative care specialists testified that it would hinder the provision of effective pain relief in unrelated circumstances.

Despite the PRPA’s failure, it highlighted the vulnerability of proponents’ state-level initiatives to federal overrides. Battin claims that this revelation prompted proponents to seek alternative methods that could not be so easily eradicated by federal regulation.

This pursuit of alternative methods culminated in the creation of “NuTech:” new technologies capable of causing “easy death” without the assistance of a physician or prescription-limited drugs. Most importantly, Battin contends, this means these technologies are not subject PRPA-like restrictions.

This series of moves and countermoves—the passage of the Death with Dignity Act, attempted passage of PRPA, and creation of NuTech—has created an area of individualized medicine difficult to reach with regulation. Battin suggests that this transition toward an unregulated model of end-of-life medicine is problematic, concluding “it is not clear that this is a change for the better.”

Many centrist organizations share this cautious sentiment and have chosen to continue advocating more traditional legalization initiatives, despite the looming threat of oppositional federal regulation.

Some legalization opponents fear it will facilitate abuse by careless physicians and greedy health care institutions. NuTech may provide the perfect compromise for these opponents, Battin claims, because the decision-making power is vested solely with the patient themselves.

Although Battin fears the debate over assisted death will continue its historical pattern of escalation without appropriate regulation, she urges proponents and opponents alike to pursue conciliatory, rather than escalatory, moves.

Complete Article HERE!

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!

Choosing a dignified death

— Stratford woman shares medical assistance in dying journey

Stratford resident and journalist Diane Sims, who is living with end-stage multiple sclerosis, recently received approval for medical assistance in dying (MAiD). She spoke with the Beacon Herald about that process and why she is choosing to end her life.

Approved for medical assistance in dying last year, Stratford’s Diane Sims recently spoke with the Beacon Herald about her journey and her choice to die with dignity.

By Galen Simmons

In making the decision on how and when she will die, Diane Sims is also choosing how she will live the rest of her life.Last year, the Stratford journalist and writer, who was diagnosed with multiple sclerosis in 1975 when she was just 17 and declared palliative two years ago, qualified and was approved for medical assistance in dying (MAiD).

“I never want to end up in a nursing home, especially after what we saw coming out of COVID,” Sims told the Beacon Herald in a recent interview. “My whole experience with nursing homes is they’re just places where you’re waiting for God. It was the lack of independence and privacy, and I worried about care because my care needs are high. I never wanted that.“And I’m a communicator, so when my hands stop working completely and my voice stops working, I don’t feel I have myself left anymore. MAiD is such a dignified way to go,MAiD and there’s no purchase in people giving me lectures about God because the divine and I are at peace with this.”

A nuanced decision

In Canada, qualifying and being approved for medical assistance in dying is a strictly regulated, yet nuanced, process. Dr. Stefanie Green, a MAiD practitioner and founding president of the Canadian Association of MAiD Assessors and Providers, said there are five criteria a patient must meet to qualify as eligible.

The patient must be 18 years of age or older and eligible for government-funded health care in Canada. The patient also needs to make a voluntary, written request free of any kind of coercion. The patient must have the capacity to make that decision, which means they understand what’s wrong with them, as well as their pros and cons of their treatment options. Finally, the patient must understand that an assisted death is irreversible.

Finally, the patient needs to have what Canadian law refers to as a grievous and irremediable condition.

“A grievous and irremediable condition is a term that is defined in the Criminal Code of Canada,” Green said. “It is the only medical practice I’m aware of that’s defined in the Criminal Code … so we know exactly what the law says about it. … It means there are three things that need to be true all at the same time. … The patient needs to have a serious, incurable illness, disease or disability. The patient needs to be in an advanced state of decline and capability. Capability really means function, so they’re no longer functioning the way they were before they had their serious and incurable illness, disease or disability.

“The third and final thing that needs to be true is that the patient has intolerable and unendurable suffering that cannot be relieved in any way they find acceptable, and that is a subjective criteria that the patient really gets to decide. It’s not for me to decide how much someone is suffering or how much they can endure.”

Once a patient meets those criteria as determined by two independent clinician assessors, there are two paths their MAiD journey can follow, Green said. The first is more straightforward. If doctors determine the patient’s natural death is reasonably foreseeable, meaning the patient is on a trajectory toward death based on their illness, disease or disability, and not that they will die within a specific time period, they are put on track one.

“The procedural safeguards (for track one patients) are some of the things I already mentioned,” Green said. “There needs to be a written request. It needs to be signed and dated. It needs to be witnessed. The patient needs to give consent at the time of their request and also immediately prior to administration of medications.

“A track two patient,” Green added, “is someone whose natural death is not reasonably foreseeable. Typically, they’re people with chronic pain syndromes that are less understood and more complex, or a patient who a clinician is just not comfortable saying their death is reasonably foreseeable. Track two patients have to meet all the track one eligibility requirements and procedural safeguards … and they have five extra procedural safeguards on top of that, (including) there has to be the input of someone with expertise in the condition that’s causing the patient’s suffering … (and) patients need to be made aware of all the reasonable and available means to reduce their suffering. … They need to be offered those means of reducing their suffering and they need to give serious consideration to accepting those means of reducing their suffering.”

A considered decision

Sims said she and her husband spent the year between her prognosis as palliative and her decision to apply for MAiD considering these alternatives and evaluating her quality of life.

While she was still getting some enjoyment out of life, her disease has confined her to an electric wheelchair and severely restricted the food she can eat. In recent years, she’s endured numerous hospitalizations and invasive surgeries, required round-the-clock care, and has suffered chronic pain, declining speech, jerky arms, spastic legs, shaky hands, a compressed lung and a dying colon.

Though she still finds enjoyment when she writes and paints, Sims knows there will soon be a time when that enjoyment will only be a memory.

“I know what’s coming and yet I look around at all this colour and I think, ‘How am I going to leave all this colour and close my eyes for the last time,’” she said. “I’m not there yet because I’m still working. I can’t keyboard very well anymore – my hands are really going – so that worries me. I notice it day by day almost.

“It is scary.”

Not everyone in her life understands or is willing to confront Sims’ decision. In a piece she wrote for Maclean’s magazine at the end of June, ‘How I Plan to Die’, Sims said her husband, Dennis, was initially horrified by the notion his wife was considering ending her life.

“Dennis was absolutely against it. I remember being outside on the terrace last summer telling him that’s what I wanted to do, and I knew his reaction because I’d known what it would be all along. He hated the idea. He felt it was a cop out. He felt it was suicide,” Sims said.

That summer, Sims and Dennis worked their way through a bucket list of day trips close to home before travel became too burdensome and painful for her. After seeing his wife struggle with pain and discomfort on those trips, Dennis finally accepted his wife’s decision.

“All of the sudden in the car he said, ‘I understand.’ I was sort of shocked into silence and had to ask him to repeat what he meant. He said, ‘I understand why you want to do it now,’ so now he understands and is supportive. All my friends have been supportive. I’ve had some family members … tell me that it’s basically suicide and I should wait for God’s timing to take me, and I’ve said, ‘You want me to suffer?’  … It’s not just the communication. It’s when the pain reaches a certain point where I won’t want to carry on with it anymore.”

A conversation with the patient

Ultimately, control over when, where and how she dies remains firmly in Sims’ hands. When she reaches the point where she knows she simply can’t carry on, she will call her MAiD practitioner and they will be ready to carry out the final stage of her journey within 48 hours. Even on the day of her planned death, Sims has the right to back out of the process until that point of no return when the medications are administered.

According to Green, a patient and their practitioner have that conversation about how the medically assisted death will be carried out as soon as it is approved.

“It’s a conversation with the patient about what’s meaningful to you. What would be a meaningful event for you? Who do you want there? The word that we tend to use … is choreograph. We choreograph their event,” Green said. “Do they want music? Do they want people there? Do they not want any of those things? Do they want a spiritual guide? Do they want prayer? Basically, anything we can accommodate, we will. Any sort of ceremony or ritual that they wish, we can do.”

For Sims, she will be surrounded by her friends when she decides to go.

“And they’ll be there to support (my husband) Dennis. … I plan to have friends and bubbly and music – all the things that I love,” Sims said. “You have to explore your soul and be at peace with yourself first (before considering MAiD). You can’t put too much purchase in what other people say because those that love you and understand what you’re going through should support you. … Don’t be afraid of the process. … You’re in the driver’s seat. Nobody is pushing you as to the time. It’s totally up to you.

“You are making the choice and it’s your last act of independence.”

According to the most recent data published by Statistics Canada, there were 12,689 written requests for MAiD in 2021,  a 31 per cent jump from 2020. These requests resulted in 10,029 medically assisted deaths in Canada in 2021, an increase of 34.7 per cent from the year before. MAiD accounted for 3.3 per cent of all deaths in Canada in 2021, up from 2.4 per cent of all reported deaths in the previous year. In 2021, slightly more than half of those receiving MAiD were men, and the small percentage difference between men and women had not changed significantly since 2020.

Complete Article HERE!

How Aid in Dying Became Medical, Not Moral

— The debate over aid in dying still rages in the language that medicine and the media use to describe the practice.

By Rachel E. Gross

In rural Iowa, Peg Sandeen recalls, living with AIDS meant living under the cloud of your neighbors’ judgment. After her husband, John, fell ill in 1992, the rumors began swirling. The couple had almost learned to live with the stigma when things took a turn for the worse.

In 1993, ravaged by his disease and running out of options, John wanted to make one final decision: to die on his own terms, with the help of life-ending medication. But at the time, there was no way to convey to his doctors what he wanted. As the debate over assisted dying raged in far-off Oregon, the headlines offered up only loaded words: murder, euthanasia, suicide.

John was adamant that what he wanted was not suicide. He loved his life: his wife, who had married him even though he had asked her to leave when he learned he was H.I.V. positive; their 2-year-old daughter, Hannah; and playing Neil Young songs on guitar, a pleasure that was rapidly being taken from him as his faculties slipped away.

“This was not a man who wanted to commit suicide, at all,” said Ms. Sandeen, now the chief executive of Death With Dignity, a group that supports aid-in-dying laws across the country. To her, the word only added more judgment to the homophobia and AIDS phobia that they — and others who found themselves in a similar position — were facing.

John had expressed to his wife his wish to die on his own terms. But, to her knowledge, he never spoke about it with his physicians. At the time, it felt impossible to bring it up as simply a medical question, not a moral one.

“Even if the answer was, ‘No, we can’t offer that,’ that would have made such a difference,” she said. “We were just facing so much stigma that even to have the ability to have this end-of-life care conversation would have just been remarkable.”

John succumbed to the virus on Dec. 9, 1993, less than a year before the Death With Dignity Act passed narrowly in Oregon. Since its enactment in 1997, more than 3,700 Oregonians have taken measures permitted by the law, which allows patients with a terminal illness and the approval of two doctors to receive life-ending medication. The practice is now legal in 10 U.S. states and Washington, D.C.

With this shift has come new language. Like the Sandeens, many health advocates and medical professionals insist that a terminally ill patient taking medication to hasten the end is doing something fundamentally different from suicide. The term “medical aid in dying,” they say, is meant to emphasize that someone with a terminal diagnosis is not choosing whether but how to die.

“There is a significant, a meaningful difference between someone seeking to end their life because they have a mental illness, and someone seeking to end their life who is going to die in the very near future anyway,” said Dr. Matthew Wynia, director of the University of Colorado’s Center for Bioethics and Humanities.

In the 1990s, advocates were facing an uphill battle for support. Two assisted-dying bills, in California and Washington, had failed, and the advocates now faced an opposition campaign that mischaracterized the practice as doctor-prescribed death. “At the time, the issue very badly needed to be rebranded and repositioned,” said Eli Stutsman, a lawyer and a main author of the Death With Dignity Act. “And that’s what we did.”

The text of the law, however, only defined the practice by what it was not: mercy killing, homicide, suicide or euthanasia. (In the United States, euthanasia means that a physician actively administers the life-ending substance. That practice has never been legal in the United States, although it is in Canada.)

New terms soon became inevitable. Barbara Coombs Lee, an author of the law and president at the time of the advocacy group Compassion and Choices, remembers a meeting in 2004 where her group discussed which terminology to use going forward. The impetus “was probably another frustrated conversation about another interminable interview with a reporter who insisted on calling it suicide,” she said.

A phrase like “medical aid in dying,” they concluded, would reassure patients that they were taking part in a process that was regulated and medically sanctioned. “Medicine has that legitimating power, like it or not,” says Anita Hannig, an anthropologist at Brandeis University and author of the book “The Day I Die: The Untold Story of Assisted Dying in America.” “That really removes a lot of the stigma.”

By contrast, words like “suicide” could have a devastating effect on patients and their families, as Dr. Hannig learned in her research. Grieving relatives might be left feeling shamed, isolated or unsupported by strangers or acquaintances who assumed that the loved one had “suicided.” Dying patients often hid their true wishes from their doctors, because they feared judgment or struggled to reconcile their personal views on suicide.

Unlike an older term, “physician aid in dying,” “medical aid in dying” also centered on the patient. “This is not a decision the physician’s making — this is not even a suggestion the physician is making,” said Ms. Coombs Lee, who has worked as an emergency-room nurse and a physician assistant. “The physician’s role is really secondary.”

An equally important consideration was how the phrase would be taken up by the medical community. Doctors in Oregon were already practicing aid in dying and publishing research on it. But without agreed-upon terms, they either defaulted to “assisted suicide” (generally used by opponents of the law) or “death with dignity” (the term chosen by advocates for the name of the law). A more neutral phrase, one that doctors could use with each other and in their research, was needed.

Not all organizations today agree that “medical aid in dying” is neutral. The Associated Press Stylebook still advises referring to “physician-assisted suicide,” noting that “aid in dying” is a term used by advocacy groups. The American Medical Association also uses this language: In 2019, a report from the association’s Council on Ethical and Judicial Affairs concluded that “despite its negative connotations, the term ‘physician assisted suicide’ describes the practice with the greatest precision. Most importantly, it clearly distinguishes the practice from euthanasia.”

Medical language has long shaped — and reshaped — how we understand death. Dr. Hannig noted that the concept of brain death did not exist until 1968. Until then, a patient whose brain activity had ceased but whose heart was still beating was still legally alive. One consequence was that any doctor removing the patient’s organs for transplant would have been committing a crime — a serious concern for a profession that is notoriously fearful of lawsuits.

In 1968, a Harvard Medical School committee came to the conclusion that “irreversible coma,” now known as brain death, should be considered a new criterion for death. This new definition — a legal one, rather than a biological one — has paved the way for organ transplantation around the world. “Before the definition of death was changed, those physicians would be called murderers,” Dr. Hannig said. “Now you have a totally new definition of death.”

Of course, doctors have always assisted patients who sought a better end. But in the past, it was usually in secret and under the shroud of euphemism.

“Back in the day, before the laws were passed, it was known as a wink and a nod,” said Dr. David Grube, a retired family physician in Oregon who began prescribing life-ending medications after one of his terminally ill patient violently took his own life. He knew doctors in the 1970s and ’80s who prescribed sleeping pills to terminally ill patients and let on that combining them with alcohol would lead to a peaceful death.

For a brief time after the Death With Dignity law was passed, some doctors used the word “hastening” to emphasize that the patient was already dying and that the physician was merely nudging along an unavoidable fate. That term did not catch on, in part because hospices did not like to advertise that they were shortening lives, and patients did not like hearing that hospice care might lead to their “hastening.”

In the absence of other language, the name of the law itself became the preferred term. The phrase allowed patients to open conversations with their physicians without feeling as though they were raising a taboo subject, and doctors understood immediately what was meant. The name has stuck: Even in his retirement, Dr. Grube gets calls from patients asking to talk about “death with dignity.”

Yet in some ways, Dr. Grube believes the use of the word “dignity” was unfortunate. To him, the crucial point is not the kind of death a patient chooses, but that the patient has a choice. “You can have a dignified death when you pull out all the stops and it doesn’t work,” he said. “If that’s what you want, it’s dignified. Dignity is defined by the patient.”

To him, that means avoiding language that heaps judgment on people who are already suffering. “There’s no place for shaming language in end-of-life,” Dr. Grube said. “It shouldn’t be there.”

Complete Article HERE!