— Now I’m filming people’s last moments at Dignitas
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.
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.
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.
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
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.
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↩!
A Compassionate Journey
— Advocates for Inclusive End-of-Life Options
By Jen Peeples
The journey towards the end of life is an inevitable part of our human experience. However, the circumstances surrounding this transition can be far from equal, particularly for marginalized communities. We had the opportunity to meet with Meagan Williams, a member of the Communications Team for many national campaigns, including in Minnesota. She connected us to the exploration of tireless efforts of organizations like Compassion & Choices, that are dedicated to advocating for expanded end-of-life options through education, outreach, and legislative change.
Williams expressed that their work serves as a beacon of hope for those directly affected by inequities from the system, while also striving to grant patients who request medical in aid death a greater autonomy and respect during their final moments.
Compassion & Choices is a prominent advocate in this space. They are relentlessly working to shed light on disparities in end-of-life care. Understanding that the path towards a compassionate and inclusive approach to end-of-life decisions begins with education and awareness. Through their outreach efforts, they aim to empower individuals and communities-especially those from marginalized backgrounds, by providing information and resources needed to make informed choices. We had the opportunity to sit-down with 4 amazing advocates of Compassion & Care. Their work is an expression of their passion. One to be known today and remembered tomorrow:
Osha Towers (they/them), a key figure in the LGBTQ+ Leadership Council, shared firsthand the shortcomings in LGBTQ+ end-of-life care during the trying times of the COVID-19 pandemic in 2020. Towers emphasized that there is deep discrimination that often arises from a profound lack of understanding and empathy– leading to distressing challenges such as misgendering, legal vulnerabilities, and the denial of chosen families.
When asked the purpose of their passion in this field, they shared, “I lost many loved ones throughout my community. Working within Black and brown LGBTQ+ healthcare– Yet advocacy work within end-of-life care specifically rose for me within the LGBTQ+ community when my coworker lost their long-time partner. Although this was someone, they had spent years caring for, their partner’s family did not honor their relationship or the queer life this person lived. So, they swooped in, took over, booted any level of queer community from the process, and buried them outside of reflecting on their whole identity.”
The fire behind the Council’s mission centers on priorities like inclusion by meeting the unique needs of LGBTQ+ individuals while driving institutional change. By engaging with diverse LGBTQ+ groups across the nation, Towers has developed a shared understanding of the importance of medical aid in dying, shaped by the community’s collective losses during the AIDS epidemic.
Now, the medical in aid dying has not always been accepted or approved by certain communities. However, a different intention and meaning was brought the platform by Dr. Joanne Roberts, a terminally ill physician, also initially held reservations about medical aid in dying laws. However, her personal journey and convictions have led her to recognize that such legislation can provide relief and rested assurance to suffering patients.
Dr. Roberts has a compelling mission to humanize this issue through the power of storytelling, emphasizing that death transcends political divides and dispels concerns about the misuse of aid-in-dying by citing data from states with extensive experience in its implementation. To hesitant lawmakers, Dr. Roberts gently reminds them that this is an individual choice, and no clinician should feel compelled to participate if it violates their moral principles.
Along with Dr. Roberts fight to appeal to legislation, Dr. Rebecca Thoman oversees legislative advocacy for Compassion & Choices in Minnesota and has been tirelessly working to advance the proposed End-of-Life Options Act. Though it faced setbacks in 2022, Dr. Thoman remains hopeful that it could see action in 2024.
Recognizing the importance of countering misinformation and creating a sense of urgency around the topic of death through peer testimonies, Dr. Thoman faithfully educates and leads other physicians on the infrequent use and strict oversight of aid-in-dying. This is all while respecting individual doctors’ moral right to opt out. Dr. Thoman understands that for lawmakers, bridging the gap between hypothetical concerns, the realities of clinical practice, and personal stories are keys to garnering their unrelentless support. If the legislation passes, Dr. Thoman believes it will bring solace through expanded end-of-life options for countless diverse individuals.
While also on the legislature end, we have attorney Phil Duran. Duran is known for his advocacy in LGBTQ+ rights in the approaches of medical aid in dying work with a unique perspective. He understands that arranging the plans one’s medical aid in death can offer a sense of peace; a sentiment shared by same-sex couples who were once denied the right to marry.
Through his work with Rainbow Health, Duran is actively expanding culturally competent care access for LGBTQ+ and aging communities through provider education and patient empowerment. He acknowledges that privilege often plays a role in determining the level of agency one has in making end-of-life decisions. Duran believes that by countering religious opposition and amplifying diverse stories, we can broaden the movement for compassionate end-of-life options.
While each advocate featured in this article brings their own expertise and experiences to the table, there are common threads that unite them in their pursuit of a more compassionate and equitable approach to end-of-life choices. Education, empowerment, and equity are at the heart of their endeavors. Despite their diverse backgrounds, they all share a profound understanding of the value of having options and autonomy when it comes to one’s own passing. Through their steadfast commitment to amplifying diverse voices and stories, driving policy changes, and expanding societal mindsets – these advocates serve as inspiring examples of the passion that fuels a movement toward greater compassion and care at life’s transitioning end.
Complete Article ↪HERE↩!
Federal prisoner with terminal illness granted parole on compassionate grounds to die outside of jail
A terminally ill federal prisoner, who has been fighting for a compassionate release to die outside of jail, has been granted day parole.
Ed Speidel, a 62-year old prisoner with a terminal lung disease, will be permitted to enter a secure home with round-the-clock medical assistance, his lawyer told CTV News in an email.
Speidel suffers from end-stage chronic obstructive pulmonary disorder (COPD) along with rheumatoid arthritis, and medical tests show his lungs have only 19 per cent function compared to healthy adults.
In July, Speidel spoke about his fear of dying behind bars.
“My biggest fear is dying in jail. I don’t want to die in jail,” Speidel told CTV News in a phone interview, from an office in the Matsqui Institution, a medium-security prison in Abbotsford, B.C.
In July of 2022, Speidel, who has served a total of 41 years in prison requested parole by exception – also known as compassionate or geriatric parole — at a hearing, but his request was rejected.
This year, he obtained legal support and worked on an application for medically assisted death.
Speidel told CTV News that he was arrested for robberies and never hurt any one.
With more than 1,700 (25.6 per cent) prisoners in federal jails 50 years old and older, Speidel is one example of aging offenders increasingly susceptible to life-threatening health risks.
Lisa Crossley, who works with Prisoner Legal Services in Vancouver, told CTV News in July she thinks more options should be provided to terminally ill prisoners.
“For the vast majority of people, if you are terminally ill, what risks do you really pose? I think that should be asked and there should be more options for people for some type of release,” Crossley said.
“It is a matter of public importance that affects many people in federal prison.”
Complete Article ↪HERE↩!
Assisted dying
— ‘I do not want to end my days as a lost soul in a nursing home’
One couple’s story of four years from dementia diagnosis to assisted death
On the morning that Wayne Briese had chosen for his medically assisted death, he was out shovelling snow in front of his house at 6am, to make sure the doctor would be able to get her car in.
It was January 6th, 2022, almost four years after he had been diagnosed with Alzheimer’s disease at the age of 73. As soon as he received that news, Wayne made it clear to his wife, Jule Briese, that when he no longer had the quality of life that was acceptable to him, he wanted to avail of Medical Assistance in Dying (Maid), which was first legislated for in their home country of Canada in 2016.
“I do not want to end my days as a lost soul in a nursing home,” he told her.
At the outset, there was some doubt in their minds about whether Maid was available to somebody with dementia. Once it was clarified it could be possible, Wayne described it as “the light at the end of the tunnel”.
“I was very supportive because I know Wayne would have honoured what I wanted,” explains Jule (78), in a Dublin city hotel on a sunny September morning. She is holidaying here when we meet, her first trip to Ireland. Aware that this country is looking at the possibility of making provision for medically assisted dying, she is keen to share her experience.
The Oireachtas Committee on Assisted Dying is due to resume its public hearings today after the summer break. At the first of the committee’s five hearings so far, on June 13th last, its chairman, Independent TD Michael Healy-Rae, outlined: “The committee may recommend that changes are made to existing policy and legislation around assisted dying, but it could also recommend that no changes be made.”
The committee was set up after a Private Members’ Bill, Dying with Dignity Bill 2020, which seeks to allow for somebody with a terminal illness to request a medically assisted death, had passed the second stage in the Oireachtas.
In 2013, Marie Fleming, who was living with advanced multiple sclerosis, lost a landmark Supreme Court challenge for the right to an assisted death without putting anyone who helped her at risk of prosecution. She had claimed the ban on assisted suicide was discriminatory in that an able-bodied person may take their own life lawfully, but she could not be lawfully helped to do the same.
Wayne was always open and ready to talk. He never hid it. He wanted to be treated as Wayne, not as Wayne who had Alzheimer’s
— Jule Briese
Jule and Wayne had been married for almost 52 years at the time of his death and had been “each other’s best friends” since meeting as teachers in Ontario. For the last four years of their marriage, they comforted each other in the carrying of their individual burdens: he sensing the disease was erasing the blackboard of his life, and she the witness to its unstoppable advance. The fact that Wayne never lost his insight into what was happening “was both a blessing and a curse”, she says. He could empathise that it was hard for her too.
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Jule’s way of working through anticipatory grief of the loss of her husband was to write. A memoir booklet, entitled In the Hot Chocolate and Decadent Cake Society (2018), captured some of her early thoughts and those first telltale signs of confusion. In October 2017, as Wayne looked for his pyjamas in the wrong cupboard instead of going to the shelf where they were always stored, “fear scrapes its finger along hollows, unsettling my insides”, she wrote. She knew they were reaching the stage where “no longer content to be ignored, this elephant trumpets for more attention”.
When the anticipated diagnosis of Alzheimer’s was confirmed three months later, at the Brain Health Centre in Vancouver, it was “still surreal”, she tells me. They initially wondered, as it was a research centre, could they be involved with some research. But there wasn’t anything for Alzheimer’s and they felt “cast-off and adrift”.
How they navigated the next four years, from diagnosis to his date with death, is a story of personal choice, stresses Jule. But she believes there’s healing power in telling stories because it gives permission to other people to share theirs, with every listener, or reader, taking out of it what is for them and passing it on. She also wants to honour Wayne’s courage and “to give voice to what he was passionate about, and that was the right of the individual to an end-of-life choice”.
The couple, she says, did not choose to avail of Alzheimer’s medications for what is an incurable and progressive condition. “Diet, exercise and making your life meaningful… that is what was important to us.”
What was also at the back of their minds was that some of the drugs mask the progression.
“You get to a point where they don’t work any more – you were here, and there you are now,” she says, demonstrating a gulf that they had no wish to cover in a sudden leap. It is not that they were anti-medication, and Wayne did take a pill for anxiety from the second year onwards, but rather, it was a matter of weighing up the benefits and side effects.
Wayne lodged documents with a lawyer straight after his diagnosis, outlining his desire for Maid and his definition of quality of life. Jule knew it would be her job to look out for the red flags that would signal stages of decline. Meanwhile, they got on with life, in which the outdoors had always played a large part. “We hiked, we camped. We weren’t overly social people; we had a small circle of friends.”
With Wayne’s permission, Jule recorded the two of them talking about issues. She devised questionnaires relevant to how he was coping with daily life, and they could use his responses to give a fuller answer to the “How are you?” opening gambit at medical check-ups. Extracts from these recordings, along with selected email exchanges with his doctor and notes from Jule’s journaling, were published earlier this year in a book, Shared Conversations – Glimpses into Alzheimer’s.
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“Wayne was always open and ready to talk,” she says. “He never hid it. He wanted to be treated as Wayne, not as Wayne who had Alzheimer’s.”
In the main, friends were really supportive, but “there are those who don’t know how to cope, and they leave”.
Once the couple had established that assisted dying was a possibility for somebody with dementia, they contacted Dr Tanja Daws, who Jule had heard spoken warmly of as the doctor at the centre of somebody else’s experience of Maid. At the first meeting with the couple, Dr Daws told them it was going to be a long journey, “we are going to be together for a while”.
“And we were,” says Jule. They met her every three months after that, over nearly four years. A second, independent doctor must be involved in the assessment for Maid, so Daws referred Wayne to a geriatric psychiatrist, Dr Pawel Juralowicz, for parallel appointments. Both of them would have the chance to get to know Wayne in the lead-up to him making a formal Maid application.
A big concern for Wayne was that a time might come when he would no longer be deemed capable of giving consent, and then his choice of a medically assisted death could no longer be enabled. But a Canadian legislative amendment, Bill C-7, in March 2021, removed that worry. It allowed, in certain circumstances, for assisted dying to go ahead for an eligible patient who had agreed in advance a waiver of final consent with their doctor.
“Sometimes it’s called Audrey’s Bill,” says Jule in reference to a high-profile campaigner, Audrey Parker, who had stage-four breast cancer and had been assessed and approved for assisted dying. She had hoped to see out one more Christmas, but, afraid that pain medication would remove her ability to give final consent, she went early, choosing November 1st, 2019, for her death.
‘When I set my date for Maid I don’t want anyone to try to change my mind’. That stayed with me. It’s about Wayne
— Jule Briese
By early 2021, an escalation of Wayne’s dementia was unsettling both him and Jule. By July, he was struggling to know how the people around him fitted into his life. In a conversation recorded on July 22nd, 2021, Jule said to him: “We’ve talked about red flags and you said something like: ‘When I get to the point of not knowing who my wife is and when I get to really being in a confused state, then it’s time to think about Maid.’ Would you say that you are actually beginning to experience those things that you did not want to have to happen to you?”
“I think that is a correct observation by you,” he replies. “Is it all right to say that?”
They agreed that episodes of confusion were becoming more prolonged and that they were nearing “10 minutes to midnight”. This is a term Dr Daws used for the time at which Wayne would need to apply for a Maid assessment, to verify that he met the criteria and was fit to sign a waiver for it to go ahead without his last-minute consent, if incapable at that point.
Everybody has their own definition of quality of life, says Jule. “You had to deteriorate to a certain point, where your quality of life as you defined it was in jeopardy, and it was at that point you could set your date for Maid.”
Choosing to be formally assessed is one thing, but how do you know when to set the date? It was a question Wayne asked both of his assessors in December 2021. Jule recalls how Dr Juralowicz suggested to him that the consciousness knows when the time is right, while Dr Daws replied: “Wayne, if life is a stage, how do you want to take your final bow?”
“Within a week, Wayne said, ‘I want to have Maid after Christmas’ – that was on December 18th. I said ‘before new year’s?’ and he said ‘No, no, after new year’s.”
He set the date for January 6th, 2022, at 10am.
“Two months before he set the date, he’s in the shower and he called me, ‘Come quick’. There was his smiling face, ‘When I set my date for Maid I don’t want anyone to try to change my mind’. That stayed with me. It’s about Wayne, it’s not about me, and I think that’s really important.”
With the date set, the challenge was how would they spend the finite days left? They had envisaged they would enjoy a quiet getaway together on the west coast before Wayne said his goodbyes to relatives and friends. But, as it turned out, he had already reached a stage where he didn’t want to leave their home at Qualicum Beach on Vancouver Island.
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So they stayed put, and Wayne made phone calls to people important in his life. The couple invited close friends over to dinner and a special friend played a clarinet concert for him.
On a lighter note, Jule recalls how a niece, Kashmir, who had spent time with them while attending university nearby, had bought a gingerbread train kit as a fun gift for Wayne that Christmas before she knew he had set a date for Maid. “She said to me, I don’t think somebody that is dying is going to want to do this. I said ‘I think you’re right and we will give it to grandchildren of a friend’.”
However, when there was a power cut one afternoon, they decided to take it out and assemble it between the three of them.
He did not want me to be the worn-out caregiver. He said to me: ‘My life is finished, my quality of life is gone, you need to live your life’
— Jule Briese
Kashmir was disgusted to discover the kit did not include icing. “She said, ‘Who on earth would do this for kids and not have icing?’ I said I have honey. It was a mess, but it was like we were all kids. It was such a priceless memory.”
Although describing themselves as “more spiritual than religious”, the couple invited a local Anglican priest to be with them on the day Wayne had chosen to die. He came at 9am and, in the course of conversation around their pellet stove, Wayne spoke of how he had been blessed in life and had no regrets.
“Then he turned around to me and said beautiful things and to Kashmir.” When Dr Daws and a nurse arrived, the couple moved into the room that overlooked the garden though double glass sliding doors and the priest gave each of them an individual blessing for their diverging paths.
In a last-minute flash of Wayne’s characteristic humour, he looked at the nurse and said: “Where have you been for the last 40 years? Finally, somebody that can put in an IV.” Then he told them: “I’m ready.”
“I held his hands and Kashmir held his feet,” says Jule. “It’s like he was on his journey and preparing to leave, we had said our goodbyes. I was there to witness his leaving.” Opera singers performing some of his favourite John Denver songs, from the album Great Voices, were playing in the background.
“He passed with love and we opened the windows so his soul could go. Yeah, it was beautiful, it was peaceful, it was the way he wanted to go.” When it was over, Jule asked to spend some time alone with him and played a song she had written for him called My Best Friend.
As medically assisted dying goes, she feels she and Wayne had the “gold star” experience. Training she had done in her 50s for conflict resolution, mediation and negotiation had equipped her to communicate with Wayne throughout the lead-up.
“If I had not taken those [courses], we would never had had those conversations. It taught me to be curious.” Out of their discussions, she has created a one-act play, Ten Minutes to Midnight. She believes it will be an educational tool, showing how to communicate with somebody with dementia, as well as giving insight to doctors.
With a number of countries, including Ireland, currently looking at legislating for assisted dying, Jule hopes that what she has to share might help in some way towards them doing it better. “You look and learn from what other countries have done.”
Jule is grateful for what Wayne’s choice meant for her. “He did not want me to be the worn-out caregiver. He said to me: ‘My life is finished, my quality of life is gone, you need to live your life’. There’s the compassion. He gave me the gift of his life,” she says, as her composure throughout the interview falters for the first time. “Therefore I have to use that.”
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‘It was cruel’
— Dying patient denied assisted dying in Catholic-run hospital
Sally wanted to die on her own terms. But despite voluntary assisted dying being legal in Victoria, her advocates say a Catholic palliative care facility obstructed access
By Melissa Davey and Donna Lu
When 60-year-old Sally* told her neurologist that she wanted to choose when to die, she was dismissed. Diagnosed with motor neurone disease, Sally knew her condition was incurable and that her rapid decline could include respiratory failure, difficulty swallowing and cognitive decline.
She wanted to die on her own terms, before her symptoms became unbearable. But Sally was receiving treatment at a Catholic palliative care hospital.
Sally lived in Victoria, where legislation allows those with neurodegenerative conditions such as motor neurone disease access to voluntary assisted dying. But her advocates say none of the doctors who diagnosed and treated her would provide the necessary paperwork for her to access euthanasia, nor would they refer her to someone who would.
Sally’s calls and emails to the hospital, an institution that objected to euthanasia, elicited promises of a response at a later date that never came.
“She had a terrible experience and she had to seek help outside of the hospital system,” says Jane Morris, the vice-president of Dying with Dignity Victoria. “She was one of the most lovely people I’ve ever met and it was cruel she was ignored or met with empty platitudes.”
By the time Morris met Sally, she couldn’t write and was communicating with a sight board. “She kept asking me to write down her story and tell it one day for her,” Morris says. “She told me that she wants voluntary assisted dying to be discussed openly, to be destigmatised and not subject to the religious doctrine of faith-based health facilities.”
Doctors and legal experts who spoke to Guardian Australia have called for voluntary assisted dying laws, which differ between the states and territories, to be nationalised and made more humane so that institutional objection does not lead to delays in care, or to patients dying in places they do not feel comfortable.
Depending on where someone lives, the catchment area they fall into may mean that the only local palliative care service is run by a Catholic organisation, which all have different policies about how they treat euthanasia. Under Catholic Health Australia’s code of ethics, any action or omission that “causes death with the purpose of eliminating all suffering” is not permissible.
Sally’s condition declines
The months of delays by the hospital would prove devastating for Sally. Her pain increased as her condition progressed, making it difficult to eat, speak and swallow. It meant taking the euthanasia medication orally was no longer an option, even if she was approved.
Desperate, Sally went outside the hospital system to a GP and asked for help. She was referred to the Victorian Voluntary Assisted Dying Statewide Care Navigator service, who helped her find a specialist and get the paperwork she needed, and she was put in contact with a voluntary assisted dying doctor trained to deliver euthanasia intravenously.
The doctor was not comfortable administering the medication outside a hospital and by the time she was approved, Sally was no longer well enough to travel to a health facility.
Plus, she wanted to die in her home.
When specialist doctor and voluntary assisted dying provider Eleanor* heard about Sally’s plight, she offered to help without hesitation. Eleanor assisted in getting approvals, travelled to Sally’s home and administered euthanasia drugs to her intravenously.
“I was sad and angry that she was delayed from accessing a service she had a right to,” Eleanor tells Guardian Australia.
“No one would write the letter that gave her access to voluntary assisted dying. She deteriorated very quickly and she lost the window in which she was well enough to comfortably go through the process in terms of going to doctor’s visits to get the approvals. So she needed to find doctors willing to come to her home. Unfortunately, cases like this are not rare.”
Sally’s situation was further complicated by federal legislation that prevents anyone seeking information or advice about voluntary assisted dying from a health professional over an electronic carriage service, ruling out telehealth consults for assistance. It is one of the reasons experts say uniform national legislation is needed.
Eleanor believes public funding for hospitals and aged care homes should come with a responsibility to provide a full suite of health services, including voluntary assisted dying.
“The alternative is sometimes to watch someone slowly suffocate to death, or die of a bowel obstruction, or starve to death because they can’t access a more humane way of dying,” she says. “We need national legislation to make the process more humane by taking the best of the legislation in each state and adopting it everywhere.”
It can also be difficult to find a doctor to administer or approve euthanasia drugs, with a shortage of trained voluntary assisted dying doctors, which Eleanor says is partly due to stigma and confusing legislation.
“Most doctors agree with voluntary assisted dying, but feel it is too hard to become a practitioner themselves.”
‘A huge power imbalance’
Victoria was the first state to pass voluntary assisted dying laws in 2017 and since then the other states have followed. In December 2022, commonwealth laws that stopped Australian territories from making new laws on voluntary assisted dying were repealed.
Three states – Queensland, South Australia and New South Wales – include institutional objection provisions in their legislation. Ben White, a professor of end-of-life law at Queensland University of Technology, says it means in those states, people are able to access voluntary assisted dying if they are a resident of an aged care or palliative care facility, even if the facility objects, because it is considered the patient’s home.
While conscientious objection by individual health professionals is protected by the Victorian legislation, objections by institutions are governed by their own policies, which White says aren’t always transparent. The Victorian health department has guidelines for how institutions can manage objections, but this is not binding. Health professionals are also barred in Victoria from raising voluntary assisted dying with their patients – the patient must bring it up first.
“I think we should be able to explain to people all the options they have,” says a health professional who has worked in end-of-life care for decades and did not want to be named. “I just believe in people being able to make informed choices – we’re talking about competent … people who already have a terminal illness.”
White agrees: “I think the key issue here is there’s a huge power imbalance.
“You’ve got people who by definition are terminally ill, expected to die shortly, trying to navigate and access voluntary assisted dying in a situation where the institution holds all the cards.”
In a study published in March, White and his colleagues interviewed 32 family caregivers and one patient about their experience of seeking voluntary assisted dying, including experiences with institutional objection. The objections described generally occurred in Catholic facilities or palliative care settings, which meant some or all of the euthanasia process could not happen on site.
Most commonly, patients were not allowed to meet with a doctor to be assessed; were prevented from accepting delivery of the euthanasia medication from a pharmacy; or were barred from taking the medication or having it administered to them.
White says it can leave families scrambling to transfer their loved ones elsewhere to die, including patients with conditions that made transportation painful.
One of the study participants said: “It will always be a great sadness for me that the last few precious hours on Mum’s last day were mostly filled with stress and distress, having to scurry around moving her out of her so-called ‘home’.”
There is a strong argument to limit the power of institutions to object to voluntary assisted dying when it harms patients, White says.
What Catholic hospitals could do
Oncologist Dr Cam McLaren says a component of cancer medicine is “fighting a losing battle and sometimes all you can do is choose the terms in which you die”.
It is why he became a voluntary assisted dying provider soon after Victorian legislation was introduced. “I was, and still am, in high demand and I have been involved in the assessment of about 300 voluntary assisted dying cases,” he says.
McLaren works for a Catholic hospital and says the values of religious organisations have “allowed them to do some incredible work in palliative care out of a desire to help people”.
He has helped facilitate the transport of patients off site to administer their euthanasia medication. He says different institutions have different levels of comfort with assisted dying and support certain “tiers” of access only; some allow doctors to consult with patients about the topic, but aren’t comfortable with the death occurring on site, for example.
“I completely support the ability of religious hospitals to refuse to be involved in practitioner administration of the drugs on site – that’s completely against their codes and morals,” he says.
“But a lot of the other steps in the process don’t involve any action. It’s just a conversation with a patient or information. And a discussion should not have the capacity to violate religious boundaries.
“I think a good model is for the hospital to allow the assessment and the delivery of the medication to the patient and then give patients time to plan to go home to have the medication administered there.”
But McLaren says this isn’t enough to protect patients in an aged care facility, where the facility is already home.
“And we have seen barriers in aged care homes overtly or covertly with non-assistance and noncompliance, so we have patients asking for months or weeks to access voluntary assisted dying and by the time they’re referred to me, it’s too late because the process takes time, which they don’t have.”
In NSW, voluntary assisted dying legislation will come into effect on 28 November, but there are still unanswered questions about barriers to access for patients being treated in religious public organisations.
People wishing to end their life in the state must be assessed by two doctors as likely having less than six months to live. A document seen by Guardian Australia detailing the response of Catholic health services Calvary Health Care, St John of God and St Vincent’s Health Australia to voluntary assisted dying suggests that these organisations will not allow assessments to be undertaken on site, with patients having to be transported elsewhere for the assessment or referred on to another hospital for care.
If a person has been approved for euthanasia to be administered by a medical practitioner, the document also outlines that the patient will need to go to another health provider or be discharged home. Doctors are concerned that these transfers may unnecessarily increase pain and suffering for patients at the end of their lives.
The document says “we do not abandon our patients” – if a person is considering or actively pursuing euthanasia, “our hospitals do not change our commitments to their provision of care”.
A spokesperson for Catholic Health Australia said on behalf of all three hospitals: “Our hospitals don’t provide [voluntary assisted dying (VAD)].”
“However, we recognise that some patients may wish to explore the option of VAD while under our members’ care. In that event, our services will never block or impede a person’s access to VAD if that’s their choice. Our services will always respect patient choice.
“When it comes to end-of-life, our members choose to specialise in palliative care. Other hospital providers choose to maintain an expertise in VAD. Transferring patients to a specialist provider when a service is not available is standard practice in the public health system.”
Dr Eliana Close, a senior research fellow at the Australian Centre for Health Law Research, has analysed institutional objection to euthanasia and says it is difficult to get data on how prevalent it is.
“We need to now see research and monitoring around how legislation in different states is unfolding and working in practice and whether rights are being respected,” Close says.
“We have certainly found we need stronger national laws to address that power imbalance between institutions and individual rights.”
Close says she finds it “completely abhorrent that publicly funded institutions should be allowed to deny access to legally available healthcare”.
“Not only is that causing harm to the patients in terms of pain and suffering, it’s causing harm to their families who have to witness it – and that has lasting impacts on their bereavement.”
* Names have been changed
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