Crofton couple chooses doctor-assisted death: “Kay and I have lived a rich and full life. All is now in order, and we’re ready to move on.”

Crofton’s Ernie Sievewright and wife Kay (in picture) died with the assistance of a doctor.

by  Robert Barron

Surrounded by his many friends and loved ones, Ernie Sievewright finally died with dignity in his Crofton home on Jan. 15.

After wading his way through a long bureaucratic process that began late last spring, the wheelchair-bound senior from Crofton was finally allowed to legally commit suicide with the assistance of a physician on Sunday under Canada’s new Medical Aid in Dying legislation, which became law in June.

His death follows the physician-assisted suicide in their home on Jan. 11 of his beloved wife Kay.

Kay had been suffering for some time from complications of multiple sclerosis and other medical issues at a nursing home in Duncan.

That makes Ernie and Kay among the first couples to successfully access doctor-assisted suicide in Canada since the Supreme Court of Canada voted unanimously to strike down the federal prohibition against it in Bill C-14.

Bill C-14 restricts physician-assisted deaths to mentally competent adults who have a serious and incurable illness, disease or disability.

Sievewright suffered from cauda equina syndrome, a serious neurological condition that causes loss of function of nerve roots along the spinal cord.

Before his death, Sievewright said the quality of life he and Kay had was continuing to deteriorate rapidly, so they decided that death was preferable.

“It was very difficult for me to see Kay in pain all the time, and I live at home alone in a wheelchair dealing with the pain of my own illness and counting on friends to come by and pick me up when I fall,” he said.

“There’s no value in our lives anymore, so we had to ask ourselves what was the point of sticking around. We didn’t want to minimize our decision, but it was well thought out and we had discussions with friends and family. We all agreed that this was the best for both of us.”

But the approval process was long, and both had to meet with countless doctors and other specialists for their assessment and approval, so it took many months before they were finally given the green light.

Both died quickly and painlessly by lethal injections delivered by a doctor.

Sievewright invited the Cowichan Valley Citizen to his home just 36 hours before his scheduled death.

It was the happiest this reporter had seen him in the four months since I first met the Irishman with his infectious grin.

During that encounter in October, Sievewright was frustrated with all the meetings and consultations with doctors and delays he and Kay were facing in the process.

All that was in the past in the hours after he held Kay’s hands on Jan. 11 while the lethal injection was being administered to her.

“I feel really, really good,” he said at his kitchen table while friends looked on.

“I was a little upset that we couldn’t go together, but now I’m glad that Kay went first and I was with her at the time. She went so peaceful and beautifully and it was a great relief for me to see that. I’m not frightened now of my own death.”

Sievewright said he still wished the process could have been easier and quicker, but all the doctors and medical officials he and Kay dealt with were very kind, and did the best they could for the couple under the new law.

Dr. David Robertson is the co-chairman of Dying with Dignity Canada’s physicians advisory council.

He said there are no day-to-day records of exactly how many people have died through doctor-assisted suicides across Canada since Bill C-14 was legislated in June.

But Robertson said it’s been estimated that approximately three doctor-assisted deaths have been occurring a week on Vancouver Island for the last six months.

“I think the numbers across Canada are steadily increasing, particularly on the Island which has a long history of activism on this issue,” he said.

Robertson said it’s a fact that some doctors and nurses have personal views and are reluctant to participate in doctor-assisted deaths, “but many others are very willing”.

He said there are currently only 12 physicians on the Island who have taken the required training to perform the deaths, and many more are in the process of completing the education.

But Robertson said the numbers of medical staff who have the training and expertise have little to do with the amount of time it takes for people to make their way through the medical bureaucracy.

“We have the same requirements in B.C. as the rest of the country, and there are numerous documents and forms to be filled out and steps that have to be taken,” he said.

“There are very high standards to fit the criteria, so this is no simple process. It’s not a decision that patients or the medical community take lightly. We’ll continue to monitor physician-assisted suicides across the Island and the country and develop the process as we go to better fit the needs out there.”

As for Sievewright, he was just happy to finally get to the end of his long journey.

“Kay said she’d have the boat in the water with a full bait bucket and at least one dog on board waiting for me when I get there, and we’ll go fishing on flat and calm seas,” he said with a smile.

“I’m hoping that this really happens because it would be fantastic. Kay and I have lived a rich and full life. All is now in order, and we’re ready to move on.”

Complete Article HERE!

The final chapter

A look at the obstacles of a physician-assisted death in Canada

By

[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.

Complete Article HERE!

Terminally ill Vancouver Island woman thanks Canada for a peaceful death

Noreen Campbell underwent a medical assistance in dying procedure on Thursday.

By Amy Smart

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.”

She died at 2:38 p.m.

Complete Article HERE!

The Role Of Mindfulness In End Of Life Care

by vimhsadmin

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.

Complete Article HERE!

Songs of farewell

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.”

Complete Article HERE!

Boomers driving changes in end-of-life care

With ever more baby boomers entering their golden years, third party end-of-life planners may be in great demand over the next two decades, as people try to take more control over their care as they die.

By Candace Moody

The Baby Boomers have redefined every stage of life they passed through, changing the definition of what it meant to be young, middle aged and now, old. (Fifty is the new 30, and gray is the new black.) Finally, we’re working on the last frontier — death.

An enormous amount of health care spending is invested in the postponement of dying. Courtney Martin wrote in the New York Times last year: “According to the National Institute of Health, 5 percent of the most seriously ill Americans account for more than 50 percent of health care spending, with most costs incurred in the last year of life in hospital settings.”

The Baby Boom generation is becoming the largest group of elderly people the country has seen, and when we go, we want to go well.

End-of-life planning became a controversial part of the Affordable Care Act when vice presidential candidate Sarah Palin labeled the idea “death panels” in 2009. In 2015, the ACA once again proposed reimbursing doctors for having the discussion with patients. Some futurists predict that third party end-of-life planners may be in great demand over the next 20 years as people try to take more control over their care as they die.

Studies have shown that two-thirds of us would prefer to die at home, but most of us generally die in Intensive Care Units at hospitals, receiving care and medication that extends the quantity of time we live, but greatly reduces the quality of it. End-of-life planners can help individuals and their families create a plan that accounts for how and where someone will face the last few months of life: at home, in a hospital or in hospice.

End-of-life counseling can be delivered by a variety of professionals, including clergy and chaplains, financial planners, medical staff or attorneys. Some colleges now offer certifications for professionals who want to specialize in end-of-life care. The certifications are often part of a gerontology program, preparing students to offer advice on social, psychological, medical, financial, legal and spiritual issues related to care.

Florida-based Mediation Training Group offers training on how to mediate between elders and their adult children about issues such as driving, remaining at home or medical care. The continuing education credit program is aimed at psychologists and social workers who deal with these issues in their family practice; similar training is offered for family law attorneys.

Doulas are women who have traditionally been trained to provide information and physical and emotional support to women before and during childbirth. The International End of Life Doula Association (www.inelda.org) offers the INELDA certification, which requires 22 hours of training. Doulas must meet certain requirements, including character references, and must complete several vigils that are evaluated by staff.

End-of-life doulas focus on planning, conducting vigil during death, and reprocessing a death with loved ones afterwards to provide insight and comfort. They may work in hospice or other institutional settings or work independently. Both the University of Central Florida and University of South Florida offer graduate certificates in end-of-life care.

End-of-life counseling is a relatively new profession, so data on salaries is not broken out from a professional’s primary practice. Attorneys and social workers will offer end-of-life services, so their earnings will supplement their fees. According to prodoula.com, certified doulas charge up to $1,500 for their services and earn an average of $45,000 per year. If compassion is your strength, you may be able to turn dying into a living.

Complete Article HERE!

San Francisco Is At The Forefront Of Another Frontier: Care For Dying People

Volunteers make seasonal mandalas, a ritualistic symbol in Buddhism, out of flowers in the garden of the SF Zen Hospice Project’s Guest House.

by Jay Barmann

In large part due to the enormity of suffering and loss of life during the height of the AIDS epidemic here, San Francisco has emerged two decades later with new models for providing palliative and humanistic care at the end of life, one of the best of which is represented by the tiny San Francisco Zen Hospice Project in Hayes Valley. The hospice facility, in a Victorian on Page Street, grew out of the 54-year-old San Francisco Zen Center just up the street, and began in 1987 as a way for Zen Center members to care for young AIDS sufferers and provide them with a peaceful and comfortable death. (A similar organization, Maitri, sprung up around the same time near the Castro, and continues to this day.) As a new piece in the New York Times Magazine puts it, the Zen Hospice Project “originated as a kind of compassionate improvisation,” and it has served as inspiration and proving ground for Dr. B.J. Miller, a 45-year-old clinician at UCSF who has emerged as a passionate and charismatic advocate for a new kind of end-of-life care. As he tells the Times Mag, his goal, and that of the Zen Hospice Project, is to “de-pathologize death.”

Miller is unique as a spokesperson for this new type of palliative care in that he had his own brush with death early in life, and wears the scars from it very prominently. At the age of 19, while a sophomore at Princeton, he and a couple of friends went climbing on a New Jersey Transit commuter train after a night of drinking. When he reached the top of the train, an electrical current arced out of a charged wire into Miller’s metal wristwatch, sending 11,000 volts through his body and severely burning his arm and two legs. He would soon become a triple amputee, but the experience of being in the burn unit for months and talking himself back from near death profoundly changed how he saw life, especially when he went to medical school. It’s something he describes in a TED Talk from 2015 that’s garnered nearly five million views. In it he says “we are all patients,” using the definition of the word as “one who suffers,” and says he hopes to bring a design sensibility, “that is intention, and creativity, to the experience of dying.”

A year after the Brittany Maynard case gained national attention, around the time that California’s death-with-dignity law was passing through the state legislature in mid-2015, the Times first discovered Miller and the Zen Hospice Project, describing it as “a fascinating, small-scale experiment” in an age when end-of-life care typically falls to hospitals. Hospitals, however, are not programmatically designed to comfort and care for the needs of dying people — they’re designed to make people well and send them home — and families often panic in the face of death causing disruptions in the final months of a person’s life. While, as of 2015, 44.6 percent of all deaths took place in hospice settings, 40 percent of those patients only spent a few days there following stays in intensive care — meaning, as the Times put it, there’s “not enough time to take full advantage of the technique’s soothing possibilities.” Add to that figure the fact a 2013 study that found that more people are choosing to die at home, however they still are transported back and forth to hospitals three or more times in the final 90 days of their lives — time that would be better spent quietly with loved ones, or doing something pleasurable. Also, a hospice experience should free friends and family from the burden (and occasional trauma) of being caregivers, so that they can simply be there with the person who is dying.

That is the focus of the SF Zen Hospice Project’s Guest House: sensory pleasure. Patients are allowed to smoke, outdoors, if they wish. The smell of freshly baked cookies wafting through the house is a frequent one. People play musical instruments. And in a case described in detail in the new Times Mag piece, a 27-year-old man dying of mesothelioma, that care involved welcoming in the man’s throngs of friends, their Bud Light and their video games, decorating his room like a “late-20’s-dude’s room,” letting him go on one last Sunday sailing trip with his friends despite being in significant pain, and helping him plan a wedding for his best friends to be performed in the small garden next door to the Guest House. This all happened in the course of nine days, after which he would be dead. And the wedding went on anyway, and what followed, in the hospice Guest House, was a combination wedding reception-funeral, a celebration that was “mixed up, upside-down and unexpectedly joyful.” “It makes you happy for a place like the Guest House where such things can happen,” Miller tells the Times Mag, via a meeting with colleagues, “a roof where these things can coexist.”

Shortly thereafter Miller stepped down as executive director of the Zen Hospice Project in order to pursue related goals. He’s raising seed money for what he’s calling the Center for Dying and Living, a kind of design lab focused on new models for palliative care, and he’s co-writing a field guide to end-of-life care.

These days the Zen Hospice Project’s Guest House is still only six beds, two of which are reserved for UCSF patients, and the others funded through donations and sliding-scale fees from patients. In contrast to hospitals, which may charge thousands of dollars per day to house and care for a dying patient for an indeterminate period, stays at the Guest House cost the organization about $750 a day, proving that their model is not just better from a human standpoint, but also an economic one, even if traditional insurance does not tend to cover the cost of residential hospice.

It’s something the rest of the country, and the insurance industry, needs to consider, and maybe Dr. Miller will be the one to build it on a larger scale here in the Bay Area, before long.

Complete Article HERE!