Dawn Voice-Cooper, 76, who said her life had become an “unbearable” battle, slipped out of consciousness while surrounded by friends at an assisted-dying clinic in Switzerland
By Amy-Clare Martin
A woman who spent the last few years of her life fighting for the right to die has been given her final wish after travelling to an assisted-dying clinic in Switzerland.
Dawn Voice-Cooper was surrounded by her friends while she sipped champagne, had a last cigarette and listened to her favourite song for the final time.
Facing a daily battle against a series of incurable health problems, including severe arthritis, brain bleeds and epilepsy, Dawn, 76, was determined to end her life on her own terms before the quality of her life, which she described as “at times unbearable”, deteriorated any further.
Her tearful last words to her emotional friends and the medical staff at her bedside were simply: “Thank you, thank you everyone.”
Minutes later she was dead, after receiving a fatal dose of barbiturates, reports the Mirror, which was invited along to cover her final journey.
The former mental health worker and mother of one had described her life as being the “endless, often difficult, and usually painful, daily management of several, incurable issues”.
She said: “People often tell me, ‘Oh you look fine, you look young, you’ve got a bit of a limp’. But they don’t know what’s really going on inside me, the pain and the difficulties – the daily management of my ailments and my injuries.”
Opponents of assisted dying fear any legalisation will push disabled and elderly people into ending their lives early out of fear of becoming a care burden.
But Dawn hoped that by sharing her journey she could show that rigorous safeguards can stop abuse.
The children’s writer, from Sevenoaks, Kent, began to consider assisted dying in 2017 and made her application to the Lifecircle clinic in Basel two years ago.
The application process required her to submit her medical history, explain her reasons for wanting an assisted death and prove she was mentally competent. Once in Switzerland, she was assessed by two doctors separately before being taken to the clinic.
Unlike the better-known Dignitas, where patients drink a lethal cocktail of medication, Lifecircle sets an IV drip which recipients operate themselves.
Inside the clinic, Dawn signed her own death certificate. She hugged her friends, fellow campaigners Alex Pandolfo and Miranda Tuckett, before a nurse positioned her bed in front of the window to look out at the trees.
“It’s beautiful here surrounded by the trees. I think it must be the most beautiful place to die,” she said.
Lifecircle president Dr Erika Preisig asked Dawn four final questions on camera, to confirm she knew what she was doing and the consequences of taking the lethal drugs.
Then, listening to Nick Drake’s Day is Done, with her friends holding her hands, Dawn released a valve on the IV.
Following a police report, which takes place after every assisted death at Lifecircle, her body will be cremated and her ashes scattered by Dr Preisig.
Alex, who has early onset Alzheimer’s and who also plans to die at Lifecircle, said: “It was one of the most beautiful and loving deaths I have witnessed in contrast to the unacceptable and prolonged tortured deaths of my beloved mum and dad and the death my Alzheimer’s may bring to me.
“Dawn’s story and experience of both pain and then peace through the support of Lifecircle will be used as I continue to ask for an evidenced based parliamentary inquiry into humane voluntary assisted dying in the UK.”
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— Easier said than done
By Michael Cook
The central goal of right-to-die organisations has not changed much over the past 150 years. In 1872 a British writer, Samuel D. Williams, wrote a book advocating the use of the novel anaesthetic chloroform to give patients “a quick and painless death”. In 1931 the British eugenicist Dr Killick Millard proposed legalisation of euthanasia “to substitute for the slow and painful death a quick and painless one”.
Now that legalisation has arrived, however, doctors have realised that a Q&P death is easier said than done.
Writing in a recent issue of The Spectator (UK) Dr Joel Zivot, a Georgia physician, expresses his doubts about whether lethal medications are the way forward. He studied the autopsy reports of more than 200 prisoners executed with lethal injections and found that many may have died in great pain.
“The death penalty is not the same as assisted dying, of course. Executions are meant to be punishment; euthanasia is about relief from suffering. Yet for both euthanasia and executions, paralytic drugs are used. These drugs, given in high enough doses, mean that a patient cannot move a muscle, cannot express any outward or visible sign of pain. But that doesn’t mean that he or she is free from suffering.”
Dr Zivot believes that pentobarbital, which, it seems, is used in Oregon in 4 out of 5 assisted suicides, caused pulmonary oedema – the lungs fill with liquid secretions and the person can die in agony. “Advocates of assisted dying owe a duty to the public to be truthful about the details of killing and dying. People who want to die deserve to know that they may end up drowning, not just falling asleep,” he writes.
Nor is death necessarily quick.
In Oregon, where statistics are gathered about the mode of death, the median time to death throughout the 23 years of the Act is 30 minutes but the maximum time is 4 days and 8 hours. The median time for people to fall unconscious is 5 minutes, the maximum is 6 hours.
At least in the United States, doctors who participate in assisted suicides are aware of these issues. Dr Lonny Shavelson, a California physician who specialises in this novel field, has helped to organise the American Clinicians Academy on Medical Aid in Dying. This provides a forum for doctors to establish a best-practice for helping people to die.
It turns out that the very diseases from which the patients suffer can make the drugs less effective. Dr Shavelson spoke with Medical Xpress last year about some of the difficulties:
“Shavelson and [his colleague retired anesthesiologist Dr Carol] Parrot have identified which patients are more likely to linger, and can recommend adjustments. People with gastrointestinal cancer, for example, don’t absorb the drugs as well. Former opiate users often have resistance to some of the drugs. Young people and athletes tend to have stronger hearts and can survive longer with low respiration rates.
“We’re learning. Hypothesis, data and confirmation. This is what science is,” he said. “Our job is to stop the heart; that’s what they want us to do.”
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Now they support medical aid in dying.
“It’s not just the pain, it’s the sense of isolation and aloneness and so on, which really can’t be assuaged by hospice.”
When Mark Peterson thinks about his mother, Rhea, he thinks of the petite woman who loved to play golf, and enjoyed sitting down with a good book.
But another thing that Peterson recalls about his mother is her courage at the time of her death.
Because of the suffering and pain his mother endured, Peterson has become a vocal proponent for medical aid in dying, a way for terminally ill patients to choose to end their lives on their own terms.
State lawmakers are currently debating a bill that would legalize medical aid in dying in Massachusetts. The bill includes a variety of protections, including that the person must have a prognosis of six months or less to live, and go through a 15-day waiting period.
The initiative is already legal in a handful of states, including neighboring Vermont and Maine.
There are strong opinions both for and against the issue. Those in favor say laws in other states have worked the way they were intended. However, opponents are concerned that this will further burden the healthcare system, already taxed by the pandemic.
But behind the intellectual arguments for and against the issue are real people, like Peterson, who’ve faced the decline of a loved one and formed their opinion based on that sad reality. These are some of their stories.
A mother’s difficult choice
Rhea Peterson, who was born in 1907, began smoking cigarettes as a teenager – doctors at the time encouraged her to, she said.
Throughout her life, Rhea had been hardworking. She became a copywriter, and she won awards, her son said. She raised four boys. She also wrote books for adults and children.
Rhea also beat breast cancer — she underwent a double mastectomy in the 1940s.
But at the end of her life, Rhea was robbed of the activities she loved.
At 75, she was diagnosed with chronic obstructive pulmonary disease, or COPD.
Rhea quit smoking, her son said, “but COPD had its way with her, and basically she was no longer able to golf, and she got progressively weaker; she had to have what’s called an oxygen concentrator,” Peterson said. Using the concentrator meant she had to wear a nasal tube.
Rhea’s health continued to decline. Her vision started to go, and she began forgetting her medication. She also started becoming incontinent.
She didn’t want to go into a nursing home, Peterson said.
“She couldn’t play golf, she couldn’t read as much, she couldn’t get out and get around, and she realized she was losing some of her memory,” her son said.
“In 1985, she said, ‘I want to die,’ and the brothers all kind of freaked out,” Peterson said. “We had no idea what to do with that.”
No state had medical aid in dying at the time — Oregon eventually became the first, in the mid-1990s — and end-of-life care hadn’t yet progressed to what it is today. The options for Rhea were limited, and in early 1986, she declared she was stopping all treatments. She had decided she would try to live into that year because she was told it would be better in terms of taxes on the inheritance.
The five days between when Rhea stopped her medications to when she passed were anything but peaceful. She struggled to breathe. There weren’t any painkillers.
“It was excruciating and gruesome,” Peterson recalled. Rhea was 78 when she passed.
For the past 11 years, Peterson, a retired psychologist, has dedicated his life to researching and teaching people about end-of-life options. He has also testified before the Legislature’s Joint Committee on Public Health regarding the state’s proposed medical aid in dying bill.
When faced with end-of-life options, loved ones often panic, and sometimes get confused about what their family member would want, Peterson said.
“The decision-making can sometimes end up being distorted and cause great pain,” Peterson said. “Probably the biggest single example of that is when a child says, ‘I’ll do anything to save mom,’ and at times mom is subjected to very intrusive, aggressive efforts to save her life.”
End-of-life care and medical aid in dying
Thinking about today’s end-of-life care compared to what existed during the mid-1980s, Peterson agreed that it has improved, but sometimes palliative care needs to be about more than just treating pain.
“It’s not just the pain, it’s the sense of isolation and aloneness and so on, which really can’t be assuaged by hospice,” Peterson said. “People who get to the point where they’re sick of being sick and the indignities of not being able to wipe themselves, and endless pills, there’s so many ways that people get to the point and … they say, ‘I’m done.’”
Long before she passed away, Susan Lichwala’s mother made her promise that if she was ever in a state where she could no longer take care of herself and was being kept alive artificially, that Susan would request her mother be taken off life support.
Yet, in 2016, her mother, Lynne, was diagnosed with lung cancer — she had smoked throughout her life, Lichwala said. She started chemo, but with atrial fibrillation, or AFib, her heart wasn’t strong enough to tolerate it. She received radiation therapy, but it wasn’t enough to stop the cancer’s progress.
Toward the end of her life, Lichwala said she was clinging to being alive, but was no longer living. She died after a couple of weeks. Lynne’s care through hospice was excellent, Lichwala said, but being alive in that condition isn’t what she would’ve wanted.
“I know my mother would never have wanted to have been like that, yet there was nothing we could do about it,” Lichwala said, since the law didn’t allow for medical aid in dying. This despite the fact that, “There was absolutely no chance [that] my mother was going to live.”
Thoughts on the current bill before state lawmakers
Peterson noted that medical aid in dying shouldn’t be called suicide, saying that it’s a “very loaded negative term that’s used by people who oppose someone having the opportunity to end their life the way they would.” There’s also the stigma attached.
He does say, though, that the current bill covers things like preventing those who are depressed or suicidal from ending their lives.
Since both his parents have passed, Peterson said he’s dreamed about his dad, who died of a stroke when he wasn’t present; he wasn’t able to say anything to him before his passing.
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Hospice volunteer reflects on his work
by Dana Zigmund
Many people are uncomfortable talking about death. Juneau resident and retired biologist Carl Schrader isn’t one of them.
For the better part of the last decade, Schrader has supported people as they live out their final days in comfort as a hospice volunteer with Catholic Community Service. As a long-time volunteer, he stands at the ready to help patients and their families through the complex death and dying process.
Earlier this month, he was honored for his work as one of seven recipients of the Volunteer of the Year award given each year by the first lady of Alaska.
“I could really see a need out there. Not everybody is attracted to this type of work,” he said in a recent phone interview.
Schrader does many different things as part of his work, from delivering hospital beds to supporting caregivers, talking with people in their last days, and offering support to grieving family members.
“In our culture we tend to avoid thinking about death and dying. Most everyone likes seeing babies and kids, but the elderly and dying tend to be invisible. Our death is inevitable, but we all try to deny or at least ignore it,” he said.
Schrader said his Buddhist faith makes it easier for him to approach the idea of death and work as a hospice volunteer.
“My approach is to really face it. Don’t deny it. Don’t run away from it. As a Buddhist, you go to those places that scare you. The more you run away the more it chases you,” he said.
Schrader, who moved to Juneau from Seattle about 30 years ago, said that the work allows him to serve and care for his neighbors.
“One of the things that attracted me to Juneau is that it’s a community. I know my neighbors. Just by Juneau being semi-isolated, you get a sense of community here. I really feel it, and my volunteer work with hospice really encourages me. We take care of each other. We take care of each other because we are a community,” he said.
Schrader said that being around sick and dying people is difficult for many people, but that he has a greater level of comfort, and he’s learned to be comfortable with being uncomfortable.
“When I make a house visit, I take a few really deep breaths. Often you don’t know what you are getting into. I’m just there to be a caring human being,” he said.
Schrader said the process is liberating because it relieves him from worrying about himself or focusing on his nerves or feelings.
“I realize that I’m capable of being there for someone, just as a human being. I’m not put off by the apparent ugliness of the dying process. It’s an opportunity for me to practice compassion and support my neighbors in Juneau,” he said.
Though, he admits the work can be draining.
“It’s a very heavy time and can be very emotionally taxing sometimes to be in the presence of a dying person,” he said,
He credits a strong personal meditation practice and walks with his dog, Luna, with helping him to restore his emotional energy.
Schrader said that as he meets families during these stressful times, he’s witness to the best in people.
“People show their true compassion and it’s really beautiful,” he said.
Often, he answers questions about the process of dying.
“I explain that the body is shutting down and help people understand the stages of what’s happening,” he said.
Schrader said that explaining the death process to friends and family members makes it less upsetting for them.
“It really helps people,” he said.
Sometimes he helps family members process their stress about the situation. In other cases, he helps people deal with feelings about complicated family relationships.
Schrader said that a lot of his work goes to support caregivers.
“This is something that really surprised me when I got into this work,” he said.
Schrader explained that when a person is sent to hospice care, family members and close friends step in to help with day-to-day care with support from a team.
“It’s often a 24-hour a day job,” he said. “It’s one of the more challenging things.”
He said he helps by showing family members how to deal with straightforward, daily things like getting the patient to the bathroom or keeping their loved one clean. He also helps set up equipment and provides training to help families use it.
“Much of what I do as a volunteer is to support the caregiver. Being a caregiver is incredibly demanding both physically and emotionally. Often the caregiver is also elderly and may have physical limitations,” he said. “I look for anything I can do to be helpful. It’s often just simple things like changing light bulbs, taking out the trash, picking up medications, maybe walking the dog.”
Schrader said that he often offers to stay with the patient so family members can take a break and recharge.
“That’s when I get to spend quality time with people and get to know them. I get people to talk about their lives. I’m amazed at how amazing people are,” he said.
Schrader said that hospice patients often feel better after returning home.
“They are often quite perky and happy to be back at home. They get a lot better as soon as they come home,” he said.
He said the process of dying unleashes a wide range of emotions that can include fear and anger. He said that he’s there to stand as a witness and validate their feelings.
Some patients are eager to talk about their lives. Others have spiritual questions, he said.
“It’s really good to get them to talk about it. Some are very afraid of dying and it’s good to be as reassuring as possible,” Schrader said, noting that he listens and encourages people to share their religious perspectives with him.
Perspective on living
Schrader said that his hospice works give him a new appreciation for his life and helps him face his mortality, as he grows older.
“It makes me more appreciative of my life and what I have,” he said. “Someday, someone will deliver a hospital bed to my house,” he said.
He said that knowledge compels him and his wife, Sue, to live life fully.
“We better do what we can,” he said, adding that he enjoys being active outdoors.
“My end is not so theoretical anymore,” he said.
Schrader said that the people at Catholic Community Service make his work possible.
“It’s a real team with great staff, he said. “The entire team is just wonderful, and people are just incredibly caring people. People are so thankful and so grateful.”
Jessica Kinville, Catholic Community Service volunteer coordinator, said that Schrader is an important part of the team.
“Carl is a great person. He approaches his work with a sort of gentleness and is always an active, sympathetic listener,” she told the Empire in a phone interview Friday afternoon.
“A lot of people have felt very supported by him. He’s someone I can always count on. He always puts his heart into his work,” she added.
Schrader said that Catholic Community Service offers many senior services, and they are always looking for more volunteers.
“Here I am as a Buddhist, working for the Catholics,” he laughed.
“They have the organization and offer a lot of wonderful senior services,” he said. “We are all part of a compassionate team. We want to do what we can for people.”
Volunteer of the Year
According to the governor’s office, the First Lady of Alaska Rose Dunleavy chose Schrader as a recipient of the Volunteer of the Year award.
“Carl embodies the true Alaskan spirit and shares it through his camaraderie and passion,” the release said. “Carl is a compassionate ear for those in physical and spiritual pain, a warm presence for grieving families, and always on standby to set up a hospital bed in a living room. Carl has maintained consistent availability day-after-day, year-after-year; he is calm and patient in work that is unpredictable and emotionally taxing.”
Schrader is humble about receiving the Volunteer of the Year Award.
“I’m really accepting on behalf of the hospice team. It really felt like a shout-out to the nursing staff. I’m privileged to be a part of the team. The award really acknowledges the entire program,” he said.
Schrader was honored for his work at a ceremonial luncheon in Anchorage earlier this month.
“The reception was really good,” Schrader said. “It was nice to drop all the politics and just be there as people. We are all just people.”
Schrader said several volunteer opportunities are available through Catholic Community Service, including Friends of Seniors, which helps senior citizens with basic needs like shopping and dog walking.
Nearly nine years ago, I received a call from my stepmother summoning me to my grandmother’s house. At 92 years old, my Oma had lost most of her sight and hearing, and with it the joy she took in reading and listening to music. She spent most of her time in a wheelchair because small strokes had left her prone to falling, and she was never comfortable in bed. Now she had told her caregiver that she was “ready to die,” and our family believed she meant it.
I made it to my grandmother in time to spend an entire day at her bedside, along with other members of our family. We told her she was free to go, and she quietly slipped away that night. It was, I thought, a good death. But beyond that experience, I haven’t had much insight into what it would look like to make peace with the end of one’s life.
A recent study published in the American Journal of Geriatric Psychiatry, which gathered data from terminal patients, family members and health care providers, aims to clarify what a good death looks like. The literature review identifies 11 core themes associated with dying well, culled from 36 studies:
- Having control over the specific dying process
- Pain-free status
- Engagement with religion or spirituality
- Experiencing emotional well-being
- Having a sense of life completion or legacy
- Having a choice in treatment preferences
- Experiencing dignity in the dying process
- Having family present and saying goodbye
- Quality of life during the dying process
- A good relationship with health care providers
- A miscellaneous “other” category (cultural specifics, having pets nearby, health care costs, etc.)
In laying out the factors that tend to be associated with a peaceful dying process, this research has the potential to help us better prepare for the deaths of our loved ones—and for our own.
Choosing the way we die
Americans don’t like to talk about death. But having tough conversations about end-of-life care well in advance can help dying people cope later on, according to Emily Meier, lead author of the study and a psychologist who worked in palliative care at the University of California San Diego’s Morres Cancer Center. Her research suggests that people who put their wishes in writing and talk to their loved ones about how they want to die can retain some sense of agency in the face of the inevitable, and even find meaning in the dying process.
Natasha Billawala, a writer in Los Angeles, had many conversations with her mother before she passed away from complications of the neurodegenerative disease ALS (amytropic lateral sclerosis) in December 2015. Both of her parents had put their advanced directives into writing years before their deaths, noting procedures they did and didn’t want and what kinds of decisions their children could make on their behalf. “When the end came it was immensely helpful to know what she wanted,” Billawala says.
When asked if her mother had a “good death,” according to the UCSD study’s criteria, Billawalla says, “Yes and no. It’s complicated because she didn’t want to go. Because she lost the ability to swallow, the opportunity to make the last decision was taken from her.” Her mother might have been able to make more choices about how she died if her loss of functions had not hastened her demise. And yet Billawalla calls witnessing her mother’s death “a gift,” because “there was so much love and a focus on her that was beautiful, that I can carry with me forever.”
Dying can take a long time—which sometimes means that patients opt for pain medication or removing life-support systems in order to ease suffering. Billawala’s mother spent her final days on morphine to keep her comfortable. My Oma, too, had opiate pain relief for chronic pain.
Her death wasn’t exactly easy. At the end of her life, her lungs were working hard, her limbs twitching, her eyes rolling behind lids like an active dreamer. But I do think it’s safe to say that she was as comfortable as she could possibly be—far more so than if she’d been rushed to the hospital and hooked up to machines. It’s no surprise that many people, at the end, eschew interventions and simply wish to go in peace.
Author and physician Atul Gwande summarizes well-being as “the reasons one wishes to be alive” in his recent book Being Mortal. This may involve simple pleasures like going to the symphony, taking vigorous hikes or reading books He adds: “Whenever serious sickness or injury strikes and your body or mind breaks down … What are the trade-offs you are willing to make and not willing to make?”
Kriss Kevorkian, an expert in grief, death and dying, encourages those she educates to write advance directives with the following question in mind: “What do you want your quality of life to be?”
The hospital setting alone can create anxiety or negative feelings in an ill or dying person, so Kevorkian suggests family members try to create a familiar ambience through music, favorite scents, or conversation, among other options, or consider whether it’s better to bring the dying person home instead. Billawalla says that the most important thing to her mother was to have her children with her at the end. For many dying people, having family around can provide a sense of peace.
Opening up about death and dying
People who openly talk about death when they are in good health have a greater chance of facing their own deaths with equanimity. To that end, Meier is a fan of death cafés, which have sprung up around the nation. These informal discussion groups aim to help people get more comfortable talking about dying, normalizing such discussions over tea or cake. It’s a platform where people can chat about everything from the afterlife (or lack thereof) to cremation to mourning rituals.
Doctors and nurses must also confront their own resistance to openly discussing death, according to Dilip Jeste, a coauthor of the study and geriatric psychiatrist with the University of California San Diego Stein Institute for Research on Aging. “As physicians we are taught to think about how to prolong life,” he says. That’s why death becomes [seen as] a failure on our part.” While doctors overwhelmingly believe in the importance of end-of-life conversations, a recent US poll found that nearly half (46%) of doctors and specialists feel unsure about how to broach the subject with their own patients. Perhaps, in coming to a better understanding of what a good death looks like, both doctors and laypeople will be better prepared to help people through this final, natural transition.
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Did they receive care and compassion from loved ones or did they die alone, fearful of getting infected in hospital?
From the start of the pandemic to 24 September 2021, deaths at home in England and Wales have been 37% higher than the 2015-2019 average, according to the Office for National Statistics.
For every three people who used to die at home, four now do. That’s more than 71,000 “excess” deaths, only 8,500 of which involved Covid. Even as mortality elsewhere fell back to past levels, dying in private homes has persistently remained above average. A natural question arises: are these “extra” deaths or a shift from other locations?
Fortunately, National Records of Scotland publishes excess death calculations by location and major causes of death. Its most recent data shows the leading causes of death were cancer, heart disease and stroke. In 2021, the combined total for these causes was only about 1% above the 2015-2019 average, with around 260 extra deaths. However, deaths from these causes at home were 36% higher than recent years, with a corresponding decrease in care homes and hospitals. These additional deaths at home were not “extra”, but resulted from a major, systematic change in where people were dying.
So what’s the reason for this change and, perhaps more importantly, what was the quality of these deaths? How many were free of pain and experienced intimate care and compassion from loved ones and how many have died at home alone, fearful of getting infected in hospital? Existing statistics struggle to answer these important questions.
NHS England has sought to “personalise” end-of-life care in its long-term plan. Reported statistics from surveys and patient records about where people wish to die can exclude “missing” responses, such as when no preference is forthcoming. It is unclear if the shift towards dying at home is, on balance, a positive or negative development.
Every family has to deal with a death and live with its aftermath. In the words of Sam Royston, director of policy and research at Marie Curie: “It is critical that we ensure that those who die at home have all of the support and assistance they need for the best possible death.”
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