[E]very year 43,000 children die in the United States.
But, when people talk about death they rarely talk about kids. For many, the death of a child can be too much to even consider talking about. But, kids do get sick and face the end of life.
When your work concerns the children facing the longest odds you do not get to ignore the truth.
“I can’t tell you how many times kids have answered that question of ‘What are you worried about?’ with ‘I’m afraid I’m dying and it scares mom to talk about it,’” says Kris Catrine at Children’s Hospitals and Clinics of Minnesota.
“Anything else a kid wants to talk about they can talk about with their family and have support and this is sort of taboo. So, the scariest thing in their mind they can’t talk about; that’s a lot of weight on a child,” adds Catrine.
Dr. Stefan Friedrichsdorf at Children’s Minnesota and his staff work tirelessly to fight for life, but also realize another conversation has to happen.
“What we are asking is like considering what your daughter is up against, what are you hoping for? And, most of time, we hear ‘I hope for miracle cure.’ And, then you look them in the eye and say ‘I hope this too,’” said Dr. Friedrichsdorf. “Just in case a miracle does not happen, what else are you hoping for?”
They talk about what will make the child happy. Whether that’s just to go outside, go to school again or just to talk about what’s going on.
Kris Catrine and Dr. Friedrichsdorf work in the Palliative Care program at Children’s Minnesota.
[K]ay Carter had been suffering from spinal stenosis for years and knew she was going to become debilitated before she would die. Rather than wait until she was no longer in possession of her own body, the 89-year-old chose to die on her own terms. She left this world peacefully at the hands of a Swiss palliative care physician with her loved ones by her side.
Physician-assisted suicide was not legal in Canada at the time of Carter’s death, and as her condition worsened she knew she would lose the capacity to consent to have a physician assist her, so she travelled to Switzerland while she was still able-bodied.
“She had a premature assisted death because she couldn’t get one here in Canada,” explained Michael Begg, a professor of legal studies at Capilano University. “Some would say that the criminal prohibition killed Kay Carter, since it forced her to die years early.”
Carter’s story made up the framework for the legal case, Carter v. Canada, which over a five-year period would challenge the Harper government to reform the assisted suicide law in the Supreme Court of Canada. Carter was able to die on her own terms, but many before her had been denied that right, and their stories date as far back as Canada’s founding.
She received death threats and found herself having to wear a bulletproof vest into the clinic where she work … Many abortion doctors who ultimately quit practicing did so because of threats or attacks made against themselves or their families.
The Criminal Code of Canada was written in 1892 according to the moral guidelines of Victorian society. Protestant Christian worldview shaped legislature, and both suicide and assisted suicide were outlawed. The taking of one’s own life was an unforgivable sin, and those who were found guilty of it could not be buried in consecrated ground or ever hope to gain access to heaven.
In 1972, the law prohibiting suicide was repealed. The right to refuse life-saving medical treatment or intervention was also introduced, giving people more autonomy over their health care. Assisted suicide was still illegal, classified as murder for which physicians could receive a prison sentence of up to 14 years, but support was growing with newfound understanding of detrimental ailments that were prolonging people’s suffering well beyond what they were willing or able to cope with.
In 1993, ALS patient Sue Rodriguez appealed for the right to die with a physician’s assistance. She argued that in not being allowed to seek help, the law circumvented section seven of the Charter of Rights and Freedoms, which guarantees any individual rights to life, liberty and security of person.
“The government can violate a Charter right – but only where the courts find the violation is ‘justifiable’,” said Begg. People recognized that in denying Rodriguez the right to die, her personal autonomy was stripped away and in essence, the government claimed ownership of her body. The Supreme Court ruled that the state of the law was justifiable. “In 1993 there was a fear of potential abuse,” Begg continued, but the fear displayed by the courts was unfounded, because at the time there was no evidence to prove that the practice of euthanasia would go down a slippery slope. Rodriguez ultimately took her own life with the assistance of an anonymous physician.
“The political parties had no will to change the law to allow assisted dying because it was such a political hot potato. Most Canadians didn’t have a strong opinion on it, liberals and conservatives were not eager to take proactive steps to change the law,” said Begg. Carter’s family challenged the law again in 2011. In the time since Rodriguez had gone to court, Oregon, Belgium, Luxembourg and the Netherlands had legalized assisted suicide and set up regimes to carefully monitor assisted death and ensure that the practice was not being abused. The Canadian courts saw this and overturned the previous ruling, legalizing assisted suicide on Feb. 6, 2015.
Legalizing assisted suicide couldn’t be achieved overnight however, so the Supreme Court suspended the law for one year so regulations could be drafted. The Harper government put off writing the bill until Justin Trudeau entered office in Nov. 2015, and the Liberal government was hard pressed to draft euthanasia proceedings in time for the Feb. 6 deadline. The bill was further extended, and on June 6, 2016 formally became law, with regulations introduced on June 17.
“This is a legal right that Canadians have but if you don’t have a provider, you don’t have access, then you can’t exercise your right,” said Dr. Ellen Wiebe, a former full-service family doctor who specializes in women’s health and end of life treatment. “When I discovered that the palliative care physicians, who normally would be doing the end of life care would not…have anything to do with assisted death, then I realized that there would be a need for providers and that I could be one.”
As one of few doctors who provide abortion services and euthanasia, Wiebe has risked her life to tend to patients. Those who she has treated have been extraordinarily grateful for her services, she explained, but certainly there have been others who have frowned upon her work.
In 1994, an anti-abortion terrorist shot her colleague, Gary Romalis. The attack put Dr. Wiebe at risk since she was known publicly. She received death threats and found herself having to wear a bulletproof vest into the clinic where she worked. Her young son was terrified, and it was his fear that caused her to wonder if her work was putting her children at risk. Many abortion doctors who ultimately quit practicing did so because of threats or attacks made against themselves or their families.
Saddened that the stigma surrounding abortion never subsided as she had hoped, Wiebe pressed on and ultimately began performing end of life care for the same reasons she had when she began performing abortions. Wiebe was determined to provide a service that few others would because it was so steeped in stigma. She calls herself an activist for complete bodily autonomy.
Following the outcome of Carter v. Canada, Wiebe had one year to learn all of the skills she would need to administer euthanasia treatment. She travelled to the Netherlands and studied under doctors who had been practicing euthanasia for years. In Canada she set up a support group where doctors could learn and support each other in preparation for June 6 when the ruling became law.
Though she has observed far greater support in Canada for the right to die since then, Wiebe knows that controversy will linger for years to come. “The support is certainly solid, but there’s still lots of people who disagree,” she said, “and that will always continue, I think, because in the Netherlands where they’ve had decades of legal euthanasia they still have people who are against it.”
There are several activist groups in Canada currently speaking out against assisted suicide, including the Quebec-based Physicians’ Alliance Against Euthanasia. The coalition has spoken out against assisted suicide on the basis that intentionally ending life is a complete contradiction of the goals of practicing medicine. Some anti-euthanasia physicians have affirmed that they will not be participating in the practice while activists have stated that they intend to reverse the law yet again and call for a total ban on assisted suicide.
The Carter v. Canada ruling stated that a physician’s decision to participate in assisted dying was a matter left to his or her own conscience or personal religious beliefs. Abortion services are the same. A medical practitioner cannot be forced to provide a service that contradicts their personal beliefs. When there are no providers, a medical service that is a right guaranteed by law is made difficult if not impossible to obtain. Criminal law is mandated at the federal level and health care is regulated at the provincial level. A province can virtually outlaw euthanasia by making it inaccessible, which can be challenged in court on the grounds that personal Charter rights have been violated.
“There is potential to use the Charter to force a particular province to make assisted death more accessible,” said Begg, but if a physician doesn’t want to see their patients die when they believe there is a chance of saving them, they can’t be forced to.
“I had a patient who chose his date six months out…and he did live that long so he was able to die on the date that he had originally chosen.”
A primary fear is that people with non-debilitating or lethal conditions will give up living if an easy death is a viable alternative.
In Dec. 2012, Belgian twin brothers Marc and Eddy Verbessem died by lethal injection after finding out that they were going blind. Already deaf, they had no means of communicating with anyone but each other and their close family. They had lived together all their lives, and their brother reported that they felt they had nothing left to live for. Knowing that they would never see the other’s face again, they couldn’t bear to go on living.
In a bizarre twist, an amendment was added to the assisted suicide bill just days after their deaths enabling minors and Alzheimer’s patients to receive an assisted death. Despite making their wishes clear, the Verbessem brothers were an unusual exception to Belgium’s laws since they were neither terminally ill nor suffering unbearable physical pain. A case of an able-bodied person with no degenerative disease killing themselves followed by additions that would allow children to die also is the slippery slope that legislators feared when judging Rodriguez v. British Columbia.
Another fear is that the sick or the elderly will feel burdened or be pressured into undergoing euthanasia by their relatives if their medical treatments are costing too much. To prevent abuse of the conditions that allow for assisted suicide, Wiebe assesses her patients before they can receive the lethal treatment.
“Certainly it’s part of our job to assess each patient and be sure that they’re not being pressured. I haven’t seen anything that made me worry,” she said. “Every one of them I am satisfied that we did the right thing and that their choice was a good one.” She consults with her patients, often with their families or support groups present, to discuss their illness and their wishes. She asks her patients about their relationships and monitors how they interact with their family members before making a final judgement. It’s a subtle but obvious way, she said, to be sure that their wishes are entirely their own.
Patients are also required to undergo a 10-day reflection period before euthanasia will be administered. The reflection period was mandated to prevent patients from making hasty decisions after being diagnosed.
“There’s two reasons we’re allowed to shorten up the time from the 10 day reflection period, and those are somebody’s in danger of losing capacity — losing the ability to consent — or in danger of dying in those 10 days,” Wiebe explained. “I’ve had people who are within 24 hours of death, for example, and those have to be done very quickly, and others spend a long time deciding. I had a patient who chose his date six months out… and he did live that long so he was able to die on the date that he had originally chosen.”
Since June 6, Wiebe has consulted with over 100 patients and assisted 40 of them in ending their lives on their own terms. “It is wonderful work. Doctors love having grateful patients and I have the luck of being able to do something that people really appreciate,” she said.
The battle for the right to die has hardly abated. The regulations were written hastily so that they would meet the Supreme Court deadline of June 6, and as a result many Canadians believe the laws to be too restrictive. Safeguards such as the mandatory waiting period ensure that vulnerable people cannot undergo euthanasia before the terms of their illness have been fully processed, and two witnesses are required to attest to their wishes.
“The biggest of the flaws in the Trudeau government’s bill, critics say, is that the Criminal Code only allows assisted death for those who are facing imminent death,” said Begg. Only those suffering from a terminal condition can seek assistance, omitting hundreds of people who are suffering irreparably but not likely to die. People like Kay Carter, who would have lived in agony.
Most of us wonder, every once in a while, when we might die.
Noreen Campbell knew it would be Thursday and it was.
On Monday, she walked from her kitchen into her sun room, which looks onto a rural North Saanich property.
“I’ll go in here,” she said, sitting down in an overstuffed, beige leather chair. Her daughters, Mary and Jane, would be at either side, she said, and her husband, Cliff, would be there, too.
Campbell, 71, could still walk, talk and form coherent thoughts. She wasn’t bound to a hospital bed or so far gone that her family had to wonder about her level of consciousness. But as a registered nurse for 53 years, she had watched many people suffer in their final days and said she had reached her threshold.
“Some people might think I’m too capable, but why should you wait until you have to roll me in?” Campbell said.
“I’m ready.”
Campbell was among the first to receive approval for medical assistance in dying. That was in August, two months after landmark legislation was enacted to allow the procedure in Canada.
She chose to share her story in the hope that it might open the door for others facing death and draw attention to gaps she saw in the process. “I have this feeling that if you’re not part of the solution, you’re part of the problem. With my background, the failure to do something would be negligent,” she said.
“I believe this is the message: To reassure patients and their loved ones that there is an alternative — and give them hope and courage.”
Campbell’s health decline began with a bit of discomfort in 2012. She had a toothache that wouldn’t go away.
“One day, I was sitting and thinking and it was like a smack to the side of the head. I was the educator for the surgical unit that does oral cancer and I thought to myself: ‘What would cause the pain to stay in the same place, be consistent and get worse?’ I asked for a biopsy. And I had very extensive oral cancer,” she said.
“I think it was missed because I’m not a smoker.”
She underwent surgery to remove tissue and bone in her face and jaw, alleviating what had become horrific pain.
About a year after the surgery, she was diagnosed with chronic obstructive pulmonary disease, which is a progressive obstruction of airflow into or out of the lungs.
As a nurse, Campbell had watched many people die. Her worst fear was respiratory disease, she said, having seen, more than once, the extreme suffering of a person who is desperate for air. Faced with the same future, she began planning a trip to Switzerland, where assisted dying is legal.
A Supreme Court of Canada ruling in May 2015 meant she wouldn’t have to make the trip.
The assisted-dying movement largely began in Canada in the 1990s, with Sue Rodriguez, also from North Saanich.
Rodriguez suffered from amyotrophic lateral sclerosis (ALS) and wanted the legal right to end her life with the help of a physician. She lost her legal challenge to the Criminal Code’s prohibition on assisted death, but died in 1994 with assistance from an anonymous physician.
More than 20 years later, in 2015, the Supreme Court unanimously voted to strike down the prohibition and allow medically assisted death. It was legalized with passage of the Medical Assistance in Dying Act on June 17, 2016.
Two days later, Campbell submitted her application.
“I was ready,” she said.
Noreen Campbell underwent a medical assistance in dying procedure Thursday, here she spends time with her horse Dasha in Victoria.
Campbell told her doctor she wanted it as a backup. A respiratory infection could put her in the agony of not being able to breathe and she wanted the power to control her end, if that was the case.
“Simply put, I’d rather end it in two minutes than two days.”
Gradually, her disease progressed to the point where symptom management became a 24/7 job, she said. It had been years since her health began to decline and it became clear that she was dying.
“I think it is this perfect storm. It’s not one symptom, it’s things coming together and they just start to pile up. It’s not just my inability to breathe or my jaw pain. It’s everything. And when you know, ‘This will not get any better’ … there’s a point where you make your decision. And my point was when I was overwhelmed and I felt like I could no longer cope.
“I am dying. I am getting weaker. I can do less, symptom control is overwhelming me. I’m going to die; end of story. And I suddenly get this choice: Do I want to die in less than five minutes? Compared with [experiencing what] the people I’ve witnessed who died over hours and days went through — there is no choice. Otherwise it’s called torture,” she said.
Campbell pressed her finger over her breathing tube each time she spoke, allowing air to pass through her voice box.
Facing death made her reflective, she said.
“We all know we’re going to die, but we don’t have it in our heads. I think, culturally, we have a lot of escapism. When you look at the time before antibiotics, in the 1900s, you were grateful to be alive. But in the 2000s, we’re looking for a way to get out of this life. We have not prolonged healthy living; we have prolonged life by preserving chronic illness.”
After so many years serving at bed sides, she said being in a hospital bed and then as an at-home patient gave her a new perspective on care. Not enough attention is given to a patient’s suffering or quality of life and patients still aren’t provided with all the information they need to make informed decisions, she said.
It begins with doctors talking over a patient’s head — though in her case, she understood what they were saying. And it continues with the difficulty of obtaining information about medical assistance in dying.
Campbell said ambiguity in guidelines from the College of Registered Nurses of B.C., accompanied by recommendations to consult your employer and legal representation, for example, would discourage nurses from communicating with patients about the option unless they ask for it specifically. “I see this as an absolute conflict with suicide-prevention guidelines, which say, if someone walks in and says ‘I can’t go on,’ my question [as a nurse] should be, ‘What’s the matter?’ Not, ‘I can’t talk about that,’ ” Campbell said.
Before Bill C-14 passed into law in June, the federal government added conditions that would exclude many individuals from medical assistance in dying, arguing it needed to protect vulnerable people. It limited the right to mentally competent adults who are suffering unbearably, in an advanced and irreversible decline and whose natural deaths were reasonably foreseeable.
The law has been simultaneously celebrated for opening access, challenged on the basis that it would conflict with medical staff’s freedom of religion and criticized for being too narrow.
Justice Minister Jody Wilson-Raybould has said if assisted-dying was available to anyone suffering from a serious medical condition, then it would be an option for survivors of sexual abuse and soldiers with post-traumatic stress disorder. And the Council of Canadians with Disabilities has said the act needs more restrictions to protect people with new disabilities, who might feel hopeless before they adjust to their new reality.
A 25-year-old woman with spinal muscular atrophy has launched a constitutional challenge, with the B.C. Civil Liberties Association, to expand the right beyond those facing “foreseeable” death.
For Campbell, too, the law doesn’t go far enough. The requirement of “foreseeable death,” doesn’t take into account what can be unbearable suffering from chronic illness.
Suffering, she said, is not always a virtue.
“We should be looking more at what quality of life means to people,” she said.
“I think suffering, pain, does help people mature. That’s the difference between being a kid and an adult. Even if it’s your first broken-heart romance and you see the dud later and think, ‘Thank God,’ there’s a certain amount of pain that’s necessary to make us an understanding society and for people to develop empathy and sympathy. But the idea that suffering is always worthwhile, it’s just beyond me.
“From the time when I was approved, from the time I decided, ‘yes,’ I would say I have experienced the most calm. It’s hard to imagine, but it’s given me a chance to do things,” Campbell said, when asked if she was afraid of death.
She completed a manuscript on wound care, her specialty as a nurse. She became an honorary member of an East Coast chapter of the activist group Raging Grannies (she asked that the story end with “Rage on!”). And she published a video explaining her choice with the advocacy group Dying with Dignity.
She said she didn’t believe in bucket lists — they just cause anxiety. But the knowledge that she would get medical help in dying, when it was time, meant she didn’t have to waste time wondering.
“The other thing we don’t have is a roller-coaster. When you have people who are chronically ill, they’re desperately ill, then recover, then desperately ill, then recover. When you have medical assistance in dying, your focus can be on a comfortable death.”
On Thursday, she went into her sun room and sat down with her family. Her physician gave her a sedative, then via IV, something that would stop her heart. But first she sent the following in an email:
“This is my day — I was able to watch my grandson play hockey, we have had a string of celebrations — tears sure — but so much laughter. Thank you Canadians for making a peaceful death possible for me and sparing my family and friends from witnessing a death with fear and suffering.”
Mindfulness assists people with their end of life process by giving them and their caregivers a tool they can use in order to be fully aware of the present moment and their own physical and mental states
[T]he Venerable Yin Kit (pictured above) has spent decades in hospitals, hospices, and homes, assisting people through their death. Through these experiences, her understanding of how to compassionately and wisely care for those dying and their families has changed as a result of constantly reflecting on what she experiences and what she learns as a Buddhist nun living in the West in the 21st century.
The end of life is a transformation from one physical existence to another existence. Similarly, mindfulness is a transformation of one mental existence into another mental existence.
Emphasis on mindfulness
Buddhist teachings have always emphasized the contemplation of death; a subject that engenders so much fear and worry for many. Mindfulness can take on a role that compliments advanced medical technology in end of life (EOL) care.
Mindfulness assists people with their end of life process by giving them and their caregivers a tool they can use in order to be fully aware of the present moment and their own physical and mental states. This allows them to settle into each moment and open up to a wider vision of the future.
With mindfulness, a dying person not only sees their physical changes, but also how their mind influences the perception and experience of their waning body. With an aware and balanced mind, a person is more able to cope with the vicissitudes and challenges that come with this stage of life and be at peace with these experiences. This in turns greatly helps to console the family, friends and care-givers.
Mindfulness also assists in opening pathways for healing relationships and positive life reviews. One can be more receptive and capable of planning for, dealing with and understanding the constantly changing physical and mental experiences and in the end, one’s own death.
The role of mindfulness in end of life care
Venerable Yin Kit speaks at The End of Life: Dying, Suicide, Death conference in Vancouver, November 2016
Venerable Yin Kit spoke about the role of mindfulness in end-of-life care at Simon Fraser University’s Vancouver campus on November 3, 2016. She was also a participant in a “praxis panel” that included Rabbi Laura D. Kaplan, veterinarian Dr. Jeff Berkshire, and counselor Hilda Fernandez.
Venerable Yin Kit, also known as “Sister Jessie”, has been a Buddhist nun since 1992 and is the spiritual leader of Po Lam Buddhist Association in Chilliwack, B.C. She is involved in leading numerous workshops teaching hospice care and hospital spiritual care in Hong Kong and in Canada. The Venerable is also the advisor to the Hong Kong SPGA Hospice program.
In 2005, Venerable Yin Kit established the Compassionate Centre for Health, a service for the Chinese-speaking community in the Greater-Vancouver area. This group has grown to over fifty active volunteers who visit senior homes and palliative care units at several sites. The Venerable has spent decades in hospitals, hospices, and homes, assisting people through their death. Through these experiences, her understanding of how to compassionately and wisely care for those dying and their families has changed as a result of constantly reflecting on what she experiences and what she learns as a Buddhist nun living in the West in the 21st century.
Dr. Jeff Birkshire, Rabbi Laura Kaplan, Venerable Yin Kit Sik, and moderator Hilda Fernandez on the Praxis Panel at The End of Life: Dying, Suicide, Death (November 2016)
The End of Life: Dying, Suicide, Death
Simon Fraser University’s Institute for the Humanities hosted a conference in November 2016 called The End of Life: Dying, Suicide, Death. The conference was intended to provide space for pondering the complex and agonizing decisions regarding the end of life. Space for such conversations is especially needed given the 2015 decision of the Supreme Court of Canada declaring that the prohibition on physician-assisted dying infringes upon Section 7 of the Canadian Charter of Rights and Freedoms, and the introduction of Bill C-14 which has resulted in debate about who, when and in what circumstances an individual may make such a decision.
Speakers included academics, graduate students and practitioners who spoke from their own particular perspectives: legal, ethical, medical, and spiritual or religious. The presentations also drew upon insights from literature and art, some of humanity’s most treasured resources.
In her new book, Hallowell Singers founder Kathy Leo tells how music comforts the dying, and offers lessons for the living
By Richard Henke
BRATTLEBORO—Kathy Leo, the founder and director of Hallowell Singers, last month published On the Breath of Song: the Practice of Bedside Singing for the Dying, a book that offers guidance and insight into the practice of singing for the dying and their families.
Through the telling of true stories and over a decade of experience in song and spirit with the Hallowell hospice choir, Leo has written a guidebook for anyone offering end of life care or helping a loved one die.
“After many years of teaching workshops to newly forming or active hospice choirs, the decision to write a guidebook through personal experiences of being with the dying became clear,” writes Leo at the Hallowell website, www.hallowell-singers.org.
“On the Breath of Song is a way to get close to the bedside to explore your personal relationship with death and dying. It serves hospice singers, music therapists, chaplains, compassionate caregivers, hospice workers, and palliative care professionals.”
Birthing and dying
Although Leo has now been working with hospice care for over 15 years, she was a midwife in the Southern Vermont area for more than a decade before that. She didn’t find the change too great.
“You are in the same space: birthing and dying have similar energies,” she explains.
Shortly after Leo began her volunteer work for Brattleboro Area Hospice, musician Peter Amidon and others were invited to the bedside of a Putney woman under her hospice care to sing for two nights.
Leo writes about the experience: “In a small house on a back road in southern Vermont, a woman is dying at home surrounded by her loving family. It is a winter evening in 2003, a few days before Dinah’s last, a group of friends from the community and her church, gather around her bed to sing. She joins in. She mouths the words when her voice fails her …
“As we sing around her, Dinah is held up by her loving husband Fred, a daughter on either side of her. … [Hallowell Singers] formed after two visits to Dinah Breunig’s bedside in her home, her family welcoming and present, during the final days of her life on earth.”
Hallowell is a chorus of volunteer singers trained to practice the therapeutic art of singing for the dying. Based in Brattleboro, the chorus serves hospice clients through its affiliation with Brattleboro Area Hospice and the greater community by request.
Leo, who had been Dinah’s hospice volunteer, answered the call from Noree Ennis, the patient care Coordinator of Brattleboro Area Hospice at the time, to create and organize a “hospice choir” that would be available as a service to anyone who desired singing at the end of life as an offering of comfort.
Peter Amidon and Mary Cay Brass agreed to serve as musical directors.
‘Gifts of grace’
Almost 40 singers signed up to be trained and taught how to sing at the bedside of a dying person. Usually 4 to 6 singers go to the home of a man or woman in hospice care.
“We do not want to overwhelm the space,” Leo says. “We know how to make ourselves small in energy. Before we enter a home, we quiet ourselves internally, which can take a lot of work initially. Once there, we offer songs that are gifts of grace for everyone involved, the dying, their family and the singers.
“Beautiful things happen with music. Singing also creates a special space for a family to come closer with the dying. So much happens in this space that is rich with life, death, and mostly love.”
Leo explains that Hallowell doesn’t call these events performances, but rather, “sings.”
“We tell people not to applaud, that is not what we are here for,” she says.
The name for the Hallowell Singers comes from a song Brattleboro therapist Stephen Spitzer wrote about a friend from Hallowell, Maine, who died from a bee sting. “What he wrote so embodies the spirit of our mission that we took it as our title,” Leo says.
Since its inception in 2003, Hallowell has served hundreds of families in the Southern Vermont community.
“Little did we know at the time that as Hallowell grew and evolved, it would become a central ’practice’ in our lives, a way to learn how to live fully and with deep gratitude,” Leo writes. “Our songs and our quiet presence bring comfort and offer support to the dying. The response of those we sing for is often emotional and calming.”
Hallowell still works very closely with Brattleboro Area Hospice. “They are more like family, really, and they helped to shape and form us through support and training,” Leo confesses.
But Hallowell also has its own hospice training.
A careful approach
Leo felt the need to address specific issues that arise when singing at dying persons’ bedsides. Hallowell trainings deal with how to prepare for a sing, both individually and as a group, how to involve the family, and how to approach what Leo calls “the sacred space of dying.”
“We need to learn to enter and leave the space seamlessly,” she says.
Soon enough, the word about the special work that the Hallowell Singers were doing began to spread.
“We were asked if we could do a workshop on how to start a choir in Middlebury,” Leo says. Soon more groups were forming choirs that asked for Hallowell’s help.
“We have also helped to launch a still growing number of hospice choirs throughout the New England region and across the country by teaching workshops, offering guidance and counsel, and being available for continued support for developing hospice choirs,” Leo writes. “We are honored to be a strong model for the growing movement of the practice of bedside singing for the dying.”
Besides the numerous smaller workshops, for the past six years, Leo and Amidon have given a weekend “deepening workshop” once a year at the Rowe Center in Massachusetts.
“These are always well-attended, and people come from all over the country, even someone from New Zealand who wanted to start a Hallowell choir there,” Leo elaborates. “This movement, which began in Putney, now is spreading all over the world. Who can explain it? Perhaps it was just the right time, but it is pretty amazing.”
True stories of tenderness
Leo has often been exhorted to write a book offering guidance and insight into the practice of singing for the dying and their families.
“I first was asked to write up a guidebook years ago, but I kept telling everyone and myself, ‘It wasn’t the right time, it wasn’t time, it wasn’t time,’” she says.
But finally Leo realized that she had no real excuse for delay, and the result was On the Breath of Song.
Although the book is intended to help others working with hospice choirs, this is definitely not a book a rules. Instead, Leo says she has written a book of true stories filled with tenderness and emotion.
“Singing for the dying is intuitive, where strict rules have no place,” Leo says. “Consequently, when I came to write down all that I have learned over the years working with Hallowell, I realized that the best manner was through stories which inform the teaching. At the heart of these stories are the songs we sing, and the spirit of love we bring to this practice.”
[I]t was cold but the sun was shining when my father looked out the window and said he wanted to die.
He was lying in a hospital bed, tubes tying him to machines and drips. He was 65, wasn’t a smoker but, like a lot of firefighters, had inhaled things that embedded in his lungs, slowly strangling them. His skin was ashen, his eyes wet and hauntingly sad.
When he said he wanted to die, my immediate reaction was to reassure him, to hold his hand, to tell him that my mother, my brother, my sister, and I didn’t want him to go, that we loved him too much to let him go, that he couldn’t go just yet.
That was 29 years ago, and it took me many years to realize that my reaction to my father’s plaintive, death-bed declaration was selfish, that it was rooted in what I thought was best, what I wanted, not what he thought was best, not what he wanted.
My father lingered for several weeks after he told me he wanted to die, suffering greatly. I have no idea if he would have opted to end his life earlier, to end his suffering earlier, but I wish he had the option.
It would be helpful to know whether a majority of Massachusetts legislators think others should have that option, too, but for the last eight years they have punted on the Death with Dignity Act, bottling it up in committee so that it dies without the dignity of a full and fulsome hearing.
Five years ago, a referendum that would make it legal for physicians to prescribe medications that terminally ill people could use to end their lives was narrowly defeated. But, like all social change, like all civil rights, the right to die with dignity is moving forward, inexorably.
Last month, the Massachusetts Medical Society commissioned a survey of its members’ attitudes toward what they called “medical aid in dying.” For a group that has historically opposed what some call physician-assisted suicide, the mere act of seeking its members’ opinions acknowledges the shift, much of it generational, in thinking.
In October, Dr. Roger Kligler, a retired Falmouth physician with prostate cancer, filed a lawsuit asserting he has a right to obtain a lethal dose of medication from a doctor willing to prescribe it if he becomes terminally ill and chooses to avoid more suffering.
Dr. Kligler rightly believes he’ll get a quicker answer from a court than the Great and General Court. As it has with other highly contentious matters, including same-sex marriage and the legalization of marijuana, the Legislature has been more than happy to let the courts or the public do the heavy lifting.
But even if a court agrees with Dr. Kligler’s argument, the decision could be narrowly tailored to only his case. And as the messy rollout of marijuana legalization has shown, legislating complex matters by referendum often leads to convoluted results.
The Legislature needs to take on Death with Dignity, in all its complexity.
Nine years ago, State Representative Lou Kafka sat down with one of his constituents, a guy from Stoughton named Al Lipkind, who was dying of stomach cancer. Lipkind asked Kafka to file a bill that would make it legal for doctors to write prescriptions for terminally ill people who wanted to avoid needless suffering. Kafka refiles the bill every session. The initial dozen co-sponsors have grown to 40.
“Al was able to make me see it through his eyes,” Kafka told me. “Unless and until it becomes personalized, it’s an issue you don’t necessarily think about.”
Not long after Al Lipkind died in 2009, Kafka watched helplessly as the same disease that slowly and torturously killed my dad did the same to his father.
“I watched him gasp for breath,” Kafka said.
Like me, Lou Kafka doesn’t know if his father would have chosen to end his life before enduring months of agony. Like me, he wishes his dad had the option.
A nurse reveals how she became a ‘death doula’ and volunteers to help people ‘let go’ at the end of their life
Rebecca Green was devastated when she lost both of her parents before she turned 16, but she’s never been afraid of death
As told to Cynthia Lawrence
REBECCA Green, 46, is a nurse and lives in Edinburgh. She says:
As I sat on the sofa, tension filled the air.
Rebecca Green was a nurse for 20 years before becoming a death doula
‘What if the ambulance doesn’t get here in time?’ a man in his 70s asked me anxiously.
He was suffering from a chronic lung illness, which meant that if his condition took a turn for the worse, he’d need immediate resuscitation or he would die.
He had always been told by family and medics to keep fighting death, but I asked if he’d ever considered letting go instead.
Rebecca decided to train as a nurse when she was 20 years old and started working in intensive care
Instantly, all traces of his fear disappeared.
He admitted he didn’t want to die, but had never thought of simply giving in when the time came.
As an end of life doula – or death doula – my job is to support people in facing their fears and coming to terms with their own passing.
As odd as it sounds, people tend to want ‘permission’ to die without upsetting their family, and as I’m a stranger, they feel more able to tell me when they’re ready.
Often chatting to them over a cup of tea at home, I encourage my clients to express how they feel, share memories and see the beauty of their lives.
If they want to die at home, I help organise it with family support and act as a link between their loved ones and the NHS.
I’ve never been afraid of death, despite losing both parents as a child.
Despite losing both of her parents when she was young, Rebecca has never been afraid of death and enjoys helping others come to terms with letting go
Mum died of cancer when I was 11 and my dad died of a heart attack four years later. After that, I went to live with my aunt.
I remember being very angry – how could people carry on when my world had ended?
I wasn’t offered counselling, and while my school was sympathetic, no one wanted to talk about it.
At 20, I realised I loved being around people and didn’t want a typical nine-to-five job, so I trained as a nurse and started working in intensive care, A&E and later hospices, becoming familiar with the fragility of life.
But it wasn’t until 2010 that I became a death doula.
I mentioned to a friend that I’d love to take care of people through the dying process, and she told me she’d heard that people did that as a job.
While there are training courses, I decided to draw from 20 years’ nursing experience and my understanding of what to expect from patients living with a terminal illness.
Rebecca with her pet dog Baloo: She isn’t paid for supporting people through the dying process and still works full-time as a nurse
I first started doing it through word of mouth, helping a friend of a friend, but soon began working with a local charity Pilmeny Development Project, which put people in touch with me. I’ve even had people contact me on Twitter.
Although it can be a paid job, I do it voluntarily, and it ranges from once a week to once a month.
Mostly it involves simply talking to someone, but I might run the odd errand, such as popping out for a packet of biscuits.
I try not to get emotionally attached – if my feelings are involved, I’d be doing clients a disservice. But of course, I’ve been incredibly saddened by their stories.
One man in his 50s was devastated he wouldn’t live to see his sons grow up.
As he spoke, I burst into tears and we were both crying together.
Through her work, Rebecca has an appreciation for life and urges everyone not to waste it
I’ve helped 12 clients in total, but I’ve never been with one when they died – usually I don’t find out until the family informs me.
It can be hard to balance the job with a social life, as whenever a client needs me, I’m happy to help – unless I’m nursing, which I still do full-time – so I’ve cancelled many nights out.
Sometimes it’s hard to switch off, so I make sure I unwind by going to the gym, painting or walking my dog Baloo.
Some partners have found it scary, but most were supportive.
Being a death doula has made me realise we take the time that we have for granted.
It’s about making the most of the simple things and doing what we love.
