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.”
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.
Jule Briese: Aware that this country is looking at the possibility of making provision for medically assisted dying, she is keen to share her experience.
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.
The book Shared Conversations – Glimpses into Alzheimer’s was published earlier this year.
“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.
Jule Briese: ‘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.’
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.
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.”
— Dying patient denied assisted dying in Catholic-run hospital
Jane Morris says her friend, who had motor neurone disease, ‘had a terrible experience and she had to seek help outside of the hospital system’ in order to die via voluntary assisted dying.
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
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.”
Theresa George, known to most as Ani, says she has no fear of dying but does have a fear of how she dies. She has a degenerative, incurable condition, and when her defences are down, the upsurge of stress and anxiety can at times feel overwhelming.
“I can have panic attacks,” she said. “All of my effort at this point is on trying to keep a positive mental attitude and enjoying what life I have left.”
George, 63, has lived for 20 years on the west coast of North Uist in the Outer Hebrides with her partner, Maire Coniglio. Originally from Maine in New England, George had been working in home care when late last year she was diagnosed with motor neurone disease.
“When I came home and told my partner, she said ‘No, no, no, it can’t be that,’” George recalled.
The progressive disease began with loss of mobility in her left ankle and foot; it spread to affect her leg and now her left side is subject to tremors and weakness. A trained massage therapist, George now uses a motorised wheelchair.
Living with accelerating physical deterioration, she has the very real fear of “being trapped in my own body”, she said. “I’m slowly watching myself deteriorate, really, and it just brings up all that anxiety and fear and the stress of it all. I don’t have a fear of dying but I do have a fear of how I die – I think most people can relate to that.
“I don’t want to die but more so, I don’t want to suffer.”
George considered travelling to the Dignitas assisted dying clinic in Zurich. Faced with the significant costs of doing so – estimated by the pro-assisted dying campaign group Dignity in Dying at about £15,000 – and the logistics of travelling there, she quickly dropped the idea.
For her, dying at home on her own terms would be far preferable than the added stress of dying in an anonymous room abroad. “To have that at home, with people that you love around you, that would be amazing,” George said.
Suzie Mcallister, whose husband, Colin, died this year.
Suzie McAllister, 47, a primary school teacher in Fort William, empathises. She cared for her husband, Colin, a very fit and active climber and kayaker, as he died in enormous pain from an aggressive and untreatable stomach tumour earlier this year.
The sedatives and pain relief he was given simply failed to alleviate his suffering and distress, she said. The cancer made it impossible for him to eat. He would wake up crying out in pain.
For McAllister, it is incomprehensible the law cannot allow someone in that degree of pain to voluntarily end their suffering. Colin considered Dignitas; towards the end, he pleaded for her to find the drugs to end his life on the internet.
“He had no control, no right to choose, and that’s what made him angry” she said. “You can’t tell me that the way Colin died was moral in any way. The autonomy, the will of the patient, has to be considered.
“It wasn’t tolerable, not for me having to watch it and certainly not for him.”
It was New Year’s Eve, and my wife and I were visiting my father in his long-term care apartment. He had been cautiously wandering around, waiting for a visit, when we arrived, something he’d been doing since my mom had died a year ago. He looked frail. The “surprise question” occurred to me: Would I be surprised if he passed away in the next year?
No. I wouldn’t.
After we’d spent some time together, I asked his wishes for the coming year.
“I don’t know,” he replied. “I’m 101 years old. I was married nearly 70 years and have finished my life. Marcel, I am very much afraid of dying. Will you ensure that I don’t suffer and that dying won’t take too long?”
I promised him I would try.
The second week of January, I received a call that my father had fallen and was in pain. He had no fracture, but he insisted he did not want to get up anymore. I drove the 120 km to his home, thinking about all of the possible scenarios. My first thought was to get him on his feet again, with enough analgesics to overcome his fear of falling. As a geriatricianson, I had always tried to keep my parents active and felt proud that they had enjoyed so many years together this way.
But would such encouragement fit the situation my dad was in now? He’d asked me to make sure dying didn’t take too long. Was it already time to consider death by palliative sedation? I felt uncertain. To qualify, he needed a symptom that could not otherwise be helped, and death had to be expected within two weeks.
When I arrived at his bedside, he repeated, “I don’t want to get up anymore,” and again, he asked me to help alleviate his fear of dying. I had to honour his heartbreaking request for a peaceful death. With a leaden soul, I went to the doctor on call — luckily his own physician — and asked for his assistance in ensuring a peaceful death. We discussed all options, acknowledging my father’s increasing frailty, despair and anxiety, and we agreed to start acute palliative sedation with midazolam, adding morphine according to the Dutch national protocol. I watched as the doctor prepared the equipment, feeling reassured by his calm professional acts.
My father could not understand the plan himself, but after an hour or so he woke for a few seconds and, with a frail smile, said goodbye to my sisters and me. We made a schedule for staying with him and I took the first turn. I sat next to him for two hours, and just after his second dose of morphine, he stopped breathing and passed peacefully away, just as he had wished. Sadness and relief turned to warm gratitude in my heart. Life had given us a sensitive and wise physician who enabled us to overcome what my dad and I had feared most.
***
In December of the same year, my 86-year-old father-in-law asked me to come to Antwerp and talk to him about the options for assisted dying. He had metastatic prostate cancer and had not recovered over six weeks of hospital care. He was bedridden with a toe infection and painful pressure sores. My reflex, again, was to involve geriatricians and try to get him on his feet. However, my father-in-law, an engineer by profession, had decided it was time to turn off his engine after losing hope for sufficient recovery. My wife and I explained to him what medical assistance in dying and palliative sedation could look like, as both are allowed under certain conditions in Belgium.
Without hesitation, he chose medical assistance in dying. He was very satisfied with his life, having experienced war, liberation, marriage, births, retirement and nice family holidays. In line with his story of life, he did not want to deteriorate further and end his life in pain and misery. We kept silent while he wrote his last will, then thanked us for everything and suggested we should now watch the Belgium versus Morocco World Cup soccer match.
When the game ended, saying goodbye was hard. We looked into his eyes, still bright, and shook his hands, still strong. We knew it was the last time. But his calm smile wordlessly assured me it was time to turn off my own geriatrician’s inclination to pursue mobility and functional improvement. Death was made possible within a week, and after ensuring that all requirements were met and speaking to each family member, his oncologist carried out the procedure carefully in the presence of his children.
***
Just two weeks later, our Spanish water dog, Ticho, made me reflect again on what’s needed most at the end of a long life. For 16 years, Ticho had been my much-loved companion and daily running mate. I had begun to dream he might become the world’s oldest water dog. However, his sad eyes now showed me that his life’s end was close, also evidenced by having nearly all possible geriatric syndromes: slow gait, repeated falls, sarcopenia, cataract, dementia, intermittent incontinence and heart failure.
Still, he came with me on short walks until, one day, he became short of breath, started whimpering and did not want me to leave him alone. Patting calmed him a bit, but I realized we needed to help him die peacefully instead of trying to mobilize him again. Though not comparable to the last days of my dad and father-in-law, there were echoes.
Our three adult kids rightly arranged a family meeting, as Ticho was their sweet teddy bear. We agreed to consult a veterinarian and ask for help with a good farewell. Next morning, the vet agreed with assisting dying. She said Ticho was the oldest dog she had seen so far, and she reassured us that it was the best decision we could make. Again, I felt very thankful for this professional and compassionate help. Ticho died peacefully after sleep induction and, together, my son and I buried him in our garden.
***
Strangely, although death in old age is as natural as birth is for babies, pediatricians seem much more involved in deliveries than geriatricians are in dying. These three encounters with death in my life made me feel I had fallen short so far as a doctor, having undervalued assisting dying at old age. How to guide people to a better end of life was largely left out of my training as a geriatrician. Like pediatricians, geriatricians prefer to embrace life. In geriatric practice and research, we tend to reach for the holy grail of recovery by improving functional performance and autonomy to enhance well-being for frail older people, rather than focusing on facilitating their well-being over their last days. In this tradition, I practised hospital-based comprehensive geriatric assessment and integrated care management, as this had proven effective in giving older people a better chance of discharge to their own homes.
In my research, I had steered a straight line toward longevity and improving autonomy, in accordance with the dominant culture in society and medicine. I had excluded older people with short life expectancies from our intervention trials and did not adapt outcomes to this stage of life. Even for our recently updated Dutch handbook on geriatrics, we did not describe death or dying in any detail. I served many older people in their last days and hours, but did so with limited experience, few professional guidelines and little legal leeway.
Now, having been helped so compassionately with the deaths of three beings close to me, I realize how rewarding it can be to switch clinical gears from recovery-directed management to dying well, and to do so just in time. Older people can show and tell us when they arrive at this turning point and are ready for ending life. I hope other physicians will realize, as I have, how important it is to allow death into a conversation, even a care plan, and to be adequately trained to do so. Perhaps we also need our own turning points as physicians to get ready for the delicate responsibility of compassionate and professional assistance in personalizing good death in old age.
Julie McFadden, a hospice nurse in California. McFadden has spoken publicly about end of life care as she tries to educate people about how death with dignity takes place.
Many people might not like talking about end-of-life care or death until they’re faced with it themselves, but this hospice nurse wants to remove the taboo from the topic and educate people instead.
As an intensive care unit (ICU) nurse for over a decade, Julie McFadden, 40, focused on keeping patients alive, but when she made the switch to hospice care eight years ago, her attention turned towards making people feel comfortable as they neared the end.
McFadden, from California, regularly talks about the realities of hospice care, and what happens when a patient opts for medical aid while dying, on social media. She told Newsweek: “My main point is to make everyone a little less afraid of death. I want to change the way we look at death and dying.”
Medical aid in dying (also referred to as death with dignity, physician-assisted death, and aid in dying) is the prescribing of life-ending medication to terminally ill adults with less than six months to live, who are mentally and physically capable of ingesting the medication independently.
At present, only 10 states and the District of Columbia permit this process, but there is growing support elsewhere. A survey of over 1,000 people in 2023 by Susquehanna Polling and Research concluded that 79 percent of people with a disability agree that medical aid in dying should be legal for terminally ill adults who wish to die peacefully.
States where it’s permitted include Colorado, California, Washington, Hawaii, Maine, Montana, Oregon, and Vermont. Legislation is also being considered in Massachusetts, New York and Pennsylvania.
How the End of Life Drug Is Administered
As a hospice nurse in California, where a bill was passed to permit death with dignity in 2015, and became effective from June 2016, McFadden has assisted many patients who wanted to die on their terms.
She believes that there is real beauty in someone being able to have full autonomy over their death and choosing when they go, but she knows it’s a polarizing issue.
“People have to remember that not everyone has the same beliefs and I think it’s a beautiful thing that someone gets to have control over,” McFadden told Newsweek. “It’s powerful to witness someone be so alert, say goodbye to their loved ones, have their loved ones watch them take this drink and then die, but still be willing to be there to support them.
“I think most people in the U.S. have no idea that this law even exists, and even when I give very descriptive explanations of what the law is, what it means, what the criteria is, there’s still people who think I’m just overdosing patients with morphine.”
In order to acquire the medication, an individual’s request must be approved by two doctors, they have to undergo a psychological evaluation to ensure they aren’t suicidal, and doctors have to confirm that the person is capable of making their own decisions. Patients with certain conditions do not qualify, including those with dementia.
If approved, the person must take the medication themselves, and they can have family, friends, and hospice staff present if they wish.
Since June 2016, in California 3,766 death with dignity prescriptions have been written, and 2,422 deaths registered. To protect the confidentiality of any individual who makes this decision, death certificates usually note an underlying illness as the cause of death.
McFadden continued: “There are a few drugs mixed in, it’s taken all at once and the initial drugs kick in very quickly, within three to seven minutes. This person who ingested this drug will fall asleep or basically go unconscious. I say fall asleep just so people can picture what it looks like, but they’re unconscious.
“Then, the body is digesting and taking in the rest of the drugs that are also in that mixture, which will eventually stop the heart. It’s a general sedative and then they take two different cardiac drugs to stop the heart.
“They have a change in skin color and changes to their breathing, in what we call the actively dying phase, which is the last phase of life.”
Julie McFadden pictured, a hospice nurse in California. McFadden spent several years as an ICU nurse before going into hospice care in 2015.
People Have A Lot of Misconceptions
Regardless of whether you’re in a state that permits physician-assisted death or not, dying isn’t regularly talked about in a positive way.
One of the reasons why McFadden wants to have a more open conversation about it is to remove any prior misconceptions that people might have and educate them on what really happens.
“I have not seen anyone show signs of pain, but people are always concerned about that,” she said. “In general, if you’ve done this for a long time, if you’ve been in the healthcare system and work as a nurse or by someone’s bedside, you know what a body in pain looks like, it’s very obvious.
“A person who is unconscious and can’t verbally say they’re in pain will show you with their body language. Most people that have taken this medication who I have witnessed did not show those signs. I witness it day in, day out, but it’s pretty miraculous to see how our bodies, without even trying, know how to die. They’re built to do it.
“People get really angry and think I’m trying to hurt people. I always want to educate people around this topic, because the main thing people don’t want is for their loved ones to suffer at the end of life.”
As an ICU nurse formerly, McFadden explained to Newsweek that she was trained to keep patients alive, and they “didn’t have conversations about death early enough.” Despite patients being near death, they were kept alive through machinery for weeks or months, before ultimately dying on the ward.
Many of the country’s biggest medical associations are conflicted by death with dignity, with some choosing to endorse it, and others speaking against it. The American Public Health Association, and the American Medical Student Association are among the bodies to endorse it, but it has been publicly opposed by the American Medical Association and the American College of Physicians.
Hospice nurse Julie McFadden, 40, from California, has been discussing death with dignity. Death with dignity is permitted in California, so McFadden has shared her experiences of helping patients go through that process.
Talking Openly About Death
In 2021, McFadden set up her TikTok account (@hospicenursejulie) to speak openly with her followers about death and answer any questions people might have. Many of her videos have gone viral with millions of views, and while she does get a lot of positive feedback, there is also plenty of negativity.
There are people who wholly disagree with her advocacy for death with dignity as they claim she is playing God, or that she’s promoting suicide. But by having an open conversation, the 40-year-old hopes to make people less fearful of dying.
Speaking to Newsweek, she said: “Most of my audience is general public, that’s why I don’t talk like I’m speaking to other nurses or physicians. I talk like I’m speaking to my families who I talk to in everyday life. I think death just isn’t talked about, or it’s not explained well.
“I’m seeing so many times that people who are willing to have difficult conversations about their own death, who are willing to say they’re afraid to die, those patients who were willing to ask me those things and talk to me about death, had a much more peaceful death.”
A man from the home care agency calls on a Monday morning. “The caregivers are complaining. It’s too hard to transport Sara, to move her from the bed to the wheelchair and onto the stairlift. You need a lift or some other assistive device.”
A rush of sadness settles into my body. The end has arrived. “Sara is leaving on Friday,” I say, “Can we hold out till then?”
“Oh,” he says, and pauses, “I’m so sorry to hear this.”
My partner, Sara Flint Greenberg, was nearing the end of her nine-month journey through amyotrophic lateral sclerosis, more commonly known as ALS or Lou Gehrig’s disease, and she would take her life on Friday.
There is nothing more we could do. Her body has been ravaged by this devastating disease and she has been crystal clear, from the beginning, that she would leave when she can no longer take care of herself.
There are steps to the end of this journey.
Later that Monday morning, Sara speaks with a doctor, answering some required questions. Does she have less than six months to live? Is she mentally capable of making the decision to end her life? Can she self-administer the medication? Luckily, the session is short. Sara spends much of her day on a machine which helps her to breathe. Too much talking leaves her gasping.
On Wednesday morning Sara speaks with a second doctor who agrees that she qualifies to receive medications that assist in dying under the requirements of the California End of Life Option Act. The medication that will allow Sara to leave will be ready on Friday.
On Wednesday afternoon we celebrate our wedding. Sara and I marry in the late November light of our living room. I am not strongly attached to marriage, but as the day of Sara’s passing drew closer, I felt an overwhelming need to express the beauty of our love in ceremony.
The temporary chuppah is held over our heads by Sara’s sons Aaron and Jacob, our friend Audrey and a caregiver. We have found an independent rabbi to marry us because I am not Jewish. The rabbi is adorable in her Converse sneakers, covered with stars, as she takes us through this bittersweet ceremony. The ceremony is short because Sara is exhausted. It is her last gift to us, her family.
On Friday morning, our friend Margaret arrives from New York, kisses Sara on the cheek and tells her she loves her. It is all anyone can do. Audrey is in the kitchen. She has been with us for days, helping us through.
Later in the morning, a rabbi from our synagogue arrives to help us say goodbye to Sara. Margaret and Audrey go downstairs to wait. They sit, mostly silent and sometimes hold hands. The room feels heavy. They can hear Sara breathing above them, but they know she will not be there for long. It is one of the most reverent acts of love: to witness in silence the death of another.
At noon, Sara takes a pill to prevent nausea and vomiting when she takes the medication that will end her life. I sit beside her on the couch, Aaron is at her feet and Jacob is across from her. The rabbi is just beyond our circle as he begins to guide us through our final words. Everything is said on the edge of tears. We listen closely to hear our soft voices.
Sara regrets, deeply, that she will never see her grandchildren. She will not see her sons grow further into their lives or settle down with partners and start families. She gathers her breath and questions them closely because this is her last chance. She wants to know what their futures looks like because she will not be there.
There are apologies because anything left to be said has to be said. Death demands it. We make promises because who would say no? Sara would do anything for her sons and I promise to do the same. We celebrate Sara’s bravery. She left a longtime marriage, late in life, and jumped into love with me. And the bravery she shows today in making this choice.
The rabbi asks Sara where we can find her after she’s gone. “Walking in these hills,” she says, of the land surrounding our home where she once walked every day. She is now struggling to breathe and is silent. We are left with silence and the presence of love. We will carry this love everywhere we go.
It is almost an hour after Sara took the anti-nausea pill. She must take the medication now or wait for another day. The hospice nurse has not yet arrived. We call our hospice provider. They tell us to mix the medication with apple juice and give Sara sorbet because the taste can burn her throat. Sara reaches for the medication with both hands. She is ready to leave.
As the medication moves through her body, she prays in Hebrew: “HaShem Sheli, HaShem Sheli, ya’azor li” (“My God, my God, help me”). She recites the Shema, a centerpiece of prayer services in Judaism. As she draws closer to leaving, her last words are “Thank you, thank you,” a beautiful sentiment and a sign, I hope, that she is at peace.
Sara slides slowly down the couch, her cheek resting against the back of my hand. I feel life in her body, but after half an hour I am not sure. The hospice nurse has arrived. I ask him if she has passed. No, she is still here. Another half hour and I ask again. He checks her pulse. She has left.
:quality(70)/cloudfront-eu-central-1.images.arcpublishing.com/irishtimes/CKIPYSQKWRGVDCLSLU4Z6J6HLA.JPG)
:quality(70)/cloudfront-eu-central-1.images.arcpublishing.com/irishtimes/DKJWNBS4RZGPPNUFB2BW7KJRME.jpg)
:quality(70)/cloudfront-eu-central-1.images.arcpublishing.com/irishtimes/Q3P2A2FZFZAPFJDLMA3YG3GH2E.JPG)
