I practiced family medicine in a small town in Oregon for 35 years, retiring in 2012. I cared for many terminally ill patients, and when Oregon’s Death With Dignity law passed some of my dying patients, albeit rarely, would ask me if I could help them achieve a death that they could control. My experience caring for thousands of patients over the years had taught me that death is not the enemy; suffering is the enemy. Their dignity and suffering were not defined by me, their doctor. I listened to my patients.
Colorado’s Proposition 106 is similar to Oregon’s law (in effect almost 20 years).
The concerns published in the Denver Post editorial have been examined and re-examined and have not occurred in Oregon, and will not occur in Colorado.
In Oregon there is no evidence of abuse of the law, no evidence of a slippery slope and no evidence of the “irreversible door” the Post editorial posits. More people do not die in Oregon, but fewer people suffer.
Aid in dying is patient-driven and patient-centered. “Professionalism” means putting the patient first. Medical aid in dying is not suicide, as your editorial inappropriately described it. Someone who commits suicide has, by definition, a mental illness and is “disconnected.” As a doctor, our job is to refer those patients to an appropriate mental health care provider, as we would for any patient with similar symptoms.
A person in the process of dying wants to live but will not. She or he is “connected”; to family, hospice and the medical system which includes doctors, nurses, family therapists, music therapists and others.
Medical aid in dying is a voluntary process. No one who does not agree with it needs to participate, and in fact it has enhanced end-of-life care, palliative care, and hospice care in Oregon, something that all Coloradans should support. I am proud that I live and practiced in Oregon, and that I was able to help my dying patients achieve a compassionate and desired end to their own stories. Proposition 106 should be approved by Colorado citizens.
David R. Grube, M.D., is national medical director for Compassion and Choices in Oregon.
Last month, Laura Levis died at just 34 years old after suffering a devastating asthma attack. Her husband, Boston-based writer Peter DeMarco, has been sharing tributes to Levis on Facebook since her passing. One such tribute was a thank-you note to the staff of CHA Cambridge Hospital in Boston, where Levis spent the final days of her life. The New York Times republished the letter, and it has since gone viral, touching the hearts of thousands of readers.
The letter opens with DeMarco noting that he still remembers the name of nearly every medical professional who cared for his wife in the hospital. “As I begin to tell my friends and family about the seven days you treated my wife, Laura Levis, in what turned out to be the last days of her young life, they stop me at about the 15th name that I recall,” he wrote. “The list includes the doctors, nurses, respiratory specialists, social workers, even cleaning staff members who cared for her. ‘How do you remember any of their names?’ they ask. ‘How could I not,’ I respond. Every single one of you treated Laura with such professionalism, and kindness, and dignity as she lay unconscious.”
DeMarco continued to describe the extraordinary compassion the staff exhibited towards him, his wife, and his family in what was possibly the hardest week of his life. He explained how the doctors and nurses made Levis’ father, a doctor himself, feel involved in the decisions surrounding her care. He expressed gratitude for the staff’s willingness to break hospital rules so that the couple’s cat could pay one last visit to Levis in her room. DeMarco also admired the staff’s thoughtfulness in keeping him company when he needed it most. DeMarco went on to expressparticular gratitude over a night when Levis’ family and friends stopped by to say their goodbyes:
“One special evening, you gave me full control to usher into the I.C.U. more than 50 people in Laura’s life, from friends to co-workers to college alums to family members. It was an outpouring of love that included guitar playing and opera singing and dancing and new revelations to me about just how deeply my wife touched people. It was the last great night of our marriage together, for both of us, and it wouldn’t have happened without your support.
In an especially powerful verse, DeMarco thanked two nurses for providing him with a special final hour alone with his wife. “There is another moment—actually, a single hour—that I will never forget,” he began, before explaining that on the final day of Levis’ life, DeMarco was hoping for some time alone with her. He asked Levis’ nurses, Donna and Jen, if they could help him set up a hospital recliner next to her bed. Instead, the two nurses shifted Laura further to one side of the bed so DeMarco could lay beside her, and gave the two an hour alone together.
“I nestled my body against hers,” DeMarco wrote. “She looked so beautiful, and I told her so, stroking her hair and face. Pulling her gown down slightly, I kissed her breasts, and laid my head on her chest, feeling it rise and fall with each breath, her heartbeat in my ear. It was our last tender moment as a husband and a wife, and it was more natural and pure and comforting than anything I’ve ever felt.” What a beautiful act of kindness by two incredible nurses. The entire essay, which can be read at The New York Times, is full of heartfelt compassion. Our thoughts are with DeMarco and with Levis’ family as they grieve her passing.
Death midwife Ashley Benem, right, sits with Pam Munro at Munro’s home on Friday, July 8, 2016, in Blaine. Munro, who had Alzheimer’s, was in the process of voluntarily stopping eating and drinking with the guidance of Benem. Munro died July 17.
[W]hen Pam Munro was ready, she gathered her family and friends at her bedside. There, with a tiara perched on her head, she held court in her home for an hour or two in the evenings while she still could. Together, they joked and laughed as she waited for the death she had planned.
The 62-year-old Blaine woman died July 17.
Twelve days earlier, she had stopped eating and drinking – choosing to accelerate her death instead of lingering into the later stages of her rapidly progressing Alzheimer’s.
Her father had dementia with Lewy bodies, her grandmother Alzheimer’s. She saw them deteriorate slowly until they were institutionalized. She didn’t want to end her days locked away in a care facility, a vegetable, not knowing her family and friends.
“My life really is at the end. After that, it’s not living. And there is no cure,” Pam said in an interview on her third day without food and drink, when she could still talk. “I want to die with dignity. I want to enjoy everything I can.”
Steve Munro, her husband of 15 years, looked on as she talked. Sitting near her was Bellingham resident Ashley Benem, a death midwife who helped the Munros navigate the end of Pam’s life. Benem is the founder of the nonprofit A Sacred Passing: Death Midwifery Services.
Pam already had decided to voluntarily stop eating and drinking, which is legal and also known as VSED, when the Munros met with Benem for the first time in January.
“It was pretty daunting. We didn’t know what to do, how to go about it. We needed advice,” Steve, 66, said Sept. 26. “It gave me comfort. Part of it was they knew what to do. I didn’t know what to do.”
Benem is among a growing number – exactly how many isn’t known because there is no regulatory agency – of people who help the dying and their loved ones in their walk with death. As a birth midwife ushers new life into the world, a death midwife helps ease people into death.
Practitioners in the emerging field are known by a number of names, including death doulas, home funeral guides, transition coaches and end of life guides.
They offer a variety of services. Some are volunteers. Others, like Benem, are professionals and charge a fee.
What they share is a desire to comfort, to bring death back home into the family fold, and to once again make death a normal part of life instead of sequestering it away in hospitals and funeral homes.
A guide for the dying
Benem came to midwifery after years of medical experience as an EMT and paramedic. After the birth of her son, she became a licensed massage therapist and birth doula before becoming interested in serving as a death midwife.
Benem and her team at A Sacred Passing offer a number of services, all non-medical, that are tailored to individual needs.
They provide support and help people plan for the end of life. They work with funeral homes, hospice and others to augment existing care and services, they create vigils, they sit with the dying, they help with the practical, such as documents needed for end of life care, and they address spiritual needs.
“We go where the patient goes,” Benem said.“There’s not a single nurse or LPN (licensed practical nurse) that doesn’t want to sit at the bedside of someone that’s dying. They simply can’t because of staffing.”
She said death midwives can be advocates who help the dying and their loved ones navigate the big picture, who help them consider quality of life through the entire dying process.
“Our current models of care, though excellent at handling specific aspects of the end of life journey, leave people with huge gaps to try to navigate for themselves,” Benem said. “For example, you have an excellent physician to handle your medical care, but no one to handle the social, spiritual or economic questions or concerns.”
Such services are a convergence of two trends: People who want to die on their own terms, and the aging of baby boomers, a population juggernaut of about 75.4 million, who are driving the conversation much as they pushed for – and succeeded in getting – more personal, less institutionalized childbirth in their younger days.
We’ve lost touch with the deeper sense of what this journey is about and how to go through it.
Henry Fersko-Weiss, author of “Caring for the Dying: the Doula Approach to a Meaningful Death”
No one is tracking the number of people turning to such services but anecdotal information indicates an increase, including from people who are going to training offered by Benem.
“The sheer number of people calling, emailing with questions is on a steady rise,” Benem said. “Our classes are typically full four months in advance.”
Fersko-Weiss also reported seeing more people showing up for training and classes offered through the International End of Life Doula Association, which the former hospice social worker co-founded in 2014 to establish a standard of training and to certify death doulas.
Benem, who said she traveled and took a multitude of classes, gleaning what she needed to become a death midwife, also supported creating standards for licensing, and said she wants Washington state to certify death doulas and death midwives.
New name, old ways
The desire to bring death home is a desire to return to the old ways, those in the field said.
“We’ve lost touch with the deeper sense of what this journey is about and how to go through it,” Fersko-Weiss said.
Before the Civil War, family and friends prepared their dead for burial, according to “A Family Undertaking,” a 2004 documentary about the home-funeral movement in America.
Benem said her grandmother served as a midwife, a function common in many agricultural and rural communities in North America.
“They provided all the prenatal, birth and postpartum care for women in the town, village or community. They would fetch the doctor from the local city if there was a major situation, but most was done at home with the midwives,” she said.
“These are the same women who came to sit with the dying and tend to the very ill or injured. They were the ones who washed the bodies and prepped the body and home for receiving the wake and vigil keepers,” Benem added. “This is what she did. The training was all on the job. No formal schooling. She delivered babies and the dead. The work has not changed. Just the titles. It’s a new name for an old practice.”
“I’m at peace”
Back in the Munro household in Blaine, Benem sat near a tired Pam as she talked about her struggle with Alzheimer’s.
She would brush her teeth, forget that she had and wonder why her toothbrush was wet. She left groceries in the trunk of her car for days. She put muffins into the oven, forgot about them, and couldn’t figure out why the house was full of smoke.
Her balance was worsening rapidly. She kept falling. Benem, who had been monitoring Pam, set up a 24-hour schedule so she wasn’t left unattended and to provide some relief to Steve, who was struggling to care for her.
In the final days of her life, Pam talked about the lotion and oils her family would rub on her body after she died – giving them one last chance to touch her and be with her. She showed an ocean-themed shroud she would be wrapped in, one created for her by April Lynn, a death doula who works with Benem.
“I’m at peace. The closer it gets to my journey date, the more excited I am. I’m going my way,” Pam said.
She talked about the rocks gathered at seaside and placed downstairs in her home. She wanted loved ones to write a message or a prayer on a rock and then “huck” it – she was specific about the word – into a bay. The ritual would act as a continuation of her love for beaches and beachcombing, which included having her ashes spread at sea in the San Juan Islands.
“And when you huck it, please be sure to also huck any pain or sorrow you might be ready to release as well,” Pam said in a note. “I will be there with you. I will help you. I will always love you.”
Dr. BJ Miller does not work to heal patients, but to ensure quality of life amid advanced or serious illness. Sometimes people suggest his job is depressing, but Miller doesn’t see it that way. When people are dying it changes how they live, he says. Miller gives his Brief but Spectacular take on dying and living.
JUDY WOODRUFF: Now to another of our Brief But Spectacular series, where we ask interesting people to share their passions.
Tonight, we hear from BJ Miller, a palliative care doctor in the San Francisco Bay Area. He explains how working in end of life care can help inform the way we live.
DR. BJ MILLER, Zen Hospice Project: When people find out I’m in palliative care, first of all, many people — you start with, well, oh, well, what is that? The interdisciplinary pursuit of quality of life, and the context is always advanced or serious illness.
Palliative care is irrespective of the clock. You don’t have to be dying anytime soon.
The curiosity from the public tends to be — and I hear this all the time — wow, you know, that must be so depressing. You know, you must be depressed all the time.
It’s not always happy, by a long shot, but there is this side effect that seems to come. By facing mortality, it seems to inform how you live. So, the secret is that facing death has a lot to do with living well.
The whole reason I went into medicine was because I became a patient. In college, sophomore year, my dear friends and I were horsing around one night. We decided to climb a parked train. I happened to have a metal watch on, and the — and, when I stood up, the electricity arced to the watch, and that was that.
It was sort of an introduction to my own death, my own sense of mortality, my own finiteness.
You’re the object of a lot of sympathy, pity, a lot of head-tilts. At first, it’s kind of sweet, but then it starts turning a little saccharine. You quickly look down that road, and it’s not too long before you realize that’s a dead end. That’s just another way of removing yourself or being removed from the flow of society.
One of the ways that I got through some of the early days was insisting that this was a variation on a theme we all experience, and that theme is — basically is suffering. Some way, life is not going to do what you want it to do. Your body is not going to do what you want it to do. You will suffer. It’s unavoidable.
And there is this unnecessary rind of suffering, which is so — which is the demoralizing part, because it’s the invented stuff. It comes in terms of how we treat each other, sometimes poorly. It comes in those moments of abandonment.
We end up warehousing folks who are sitting on piles of wisdom and experience and just plain hilarious or good stories. If we could sort of shift that a little bit, there’s a lot more peace waiting for all of us as we age.
I think a lot of us are really worried, not so much about the fact that we die, but how we die. Very often, patients themselves, the people doing the dying, will get to a place of acceptance, beyond acceptance even, you know, ready to go. You’re done. You’re done with this body.
A lot of the effort, my effort, the team’s effort, the hospice organization’s effort, is actually not so much on the patient, the person doing the dying. It’s on the family.
In a way, it’s harder to accept the death of another person than accept your own, especially when you really love that person.
I’m BJ Miller. And this is my Brief But Spectacular take on tying dying and living.
JUDY WOODRUFF: You can watch additional Brief But Spectacular episodes on our Web site, PBS.org/NewsHour/Brief.
Dr. Gerald Ashe has assisted in four deaths since Canada’s new law passed.
Dr. Gerald Ashe has seen the kinds of things people do if they can’t get help in dying.
A couple of his patients have taken their own lives. Some have told him they are hoarding sleeping pills “just in case.” He says he has seen too many cases of terminal delirium, a condition where an agitated and confused dying patient survives through five to seven days. The patient will die, it’s just a matter of how long it will take.
“It’s common and it’s nasty and it requires palliative sedation. If given the choice, most people would say: ‘I’ll take the five- to 10-minute plan, not the seven-day plan.’”
Ashe has been a family physician for almost 40 years. He offers palliative care in Brockville and is a member of the physicans’ advisory council at Dying With Dignity Canada. He says his support for assisted dying came as the result of many years of “watching people die, helping people to die and watching them suffer and coming to the realization that we can’t relieve all suffering.”
Since assisted dying legislation passed on June 17, Ashe has assisted in the deaths of four patients, and another patient has permission. “They’re content to know they have permission.”
When a patient dies, it’s a “sacred moment,” he says.
“None of us really want our patients to do this. We understand it. We honour their request and their autonomy. We would prefer to provide relief in another way. I have a contract with a patient. I am with you until you die. I am not going to send you off when things get tough.”
Physicians still feel ambivalent about helping patients die. At the Brockville General Hospital, where Ashe works, a survey of the medical staff found about three-quarters agreed or strongly agreed that people should have a right to assisted death, and almost two-thirds felt it should be offered at the hospital. But only 30 per cent pf physicians would be willing to provide assisted death — with proper training — while 43 per cent would not, with the remainder neutral. About three-quarters said they would refer patients, while 13 per cent said they would not refer. The remaining respondents were neutral.
Ashe believes that only a small subset of people will seek assisted dying. In Oregon, laws permit qualified terminally ill adults to request a prescription for a medication to hasten death. With a population of four million people, about 150 permissions for physician-assisted suicide are sought every year in Oregon. Interestingly, only two-thirds of those who request the prescriptiom actually take it.
“Knowledge is empowering. People won’t make that decision because it is available,” says Ashe. “They will choose it because that’s what they want.”
He was nervous at first about going public with his support for assisted dying. In December 2014, he spoke out after a terminal cancer patient in his care shot himself. This summer, he spoke about helping an ALS patient die at home. But feedback from family and colleagues has been gratifying, he says.
“To live through this era and see this come to fruition has been an amazing experience. That we can allow someone to die peacefully, painlessly, speaks volumes abut how far we have come as a society and as a profession.”
Ashe believes the current legislation doesn’t go far enough. He would like to see other patients have access, including people with severe mental illness and competent children. People with mental health problems suffer terribly and Ashe said he can see no reason why they shouldn’t qualify. People over the age of 18 qualify, but not those who are 17. That’s arbitrary, he argues.
“The beauty of dying where and when you want and with whom is pretty amazing,” he says. “One of the reasons why I have been advocating for this isn’t altruistic. I would like to live in a world where this is possible for myself.”
So far 66 B.C. residents have ended their lives through physician-assisted death.
More than 65 B.C. residents have legally ended their lives with the help of a doctor since federal assisted death legislation took effect June 17.
Fraser Health officials confirm some of those deaths have been within this region, but referred requests for detailed numbers to the B.C. Coroners Service.
“Our first request was two days after the federal legislation was put in place,” said Lisa Zetes-Zanatta, Fraser Health’s executive director for palliative care, home care and residential care.
“A number of requests have come in and some have completed the service.”
Coroner Barb McLintock said it’s too soon to provide a regional or other breakdown on B.C.’s assisted deaths, which she said stood at 66 as of Wednesday.
The most high profile case so far made public has been that of author W.P. Kinsella, who lived in Yale and invoked Bill C-14’s assisted dying provisions Sept. 16 at Fraser Canyon Hospital.
The Catholic Church’s Vancouver Archbishop Mark Miller urged Fraser Health in an open letter not to mandate assisted dying as an option in palliative care wards, calling it a “cruel dilemma” for those vulnerable patients.
And Miller said it’s a “terrible conflict of interest” for palliative caregivers who may be compelled to offer “an economically expedient shortcut in the form of lethal injection” contrary to their ethical principles.
Zetes-Zanatta acknowledged that not all doctors or nurses are willing to participate, but said that has not been a barrier to finding sufficient volunteers.
“We’re very clear, as is the provincial and federal legislation, that conscientious objection is absolutely respected,” she said. “I would never force any of our staff into doing anything not consistent with their own moral, ethical or spiritual beliefs.”
Doctors can perform the assisted death injection independently if nursing staff who would normally assist are unwilling, she said.
Zetes-Zanatta noted the World Health Organization definition of palliative care is to protect and alleviate the suffering of patients until they reach a natural death.
“The number of palliative care physicians providing this service is less than other disciplines because it’s not aligned with their philosophy of care. That being said, there are palliative care physicians who are providing this service.”
More of the requests for assisted death come from people in the community than in hospices or palliative care settings, she added.
“We try to give the service where the patient is,” Zetes-Zanatta said. “They’re usually in intolerable suffering and so to move them is really difficult. We try to make this very much about the patient.”
Under the federal legislation, patients must be at end of life with death expected within the next six months to a year.
Only they – and specifically not youth or psychiatric patients – can make an initial request leading to more information on the assisted death option.
Usually those requests go through a family doctor, Zetes-Zanatta said, but Fraser Health will assign physicians to respond to patients who don’t have one.
“We ensure that they have had access to palliative care services and pain management services to see if we can alleviate their suffering prior to them making a formalized request for this.”
After the information provision stage, two doctors must conduct independent assessments, after which there is a 10-day waiting period before the patient can finally make the choice to die.
She said Fraser Health is now legally required to comply when patients qualify.
“Regardless of where people sit on this we have to recognize that there are patients requesting this. And we have to understand what that patient must be going through to put in a request like this.”
The legislation passed by the Justin Trudeau government came after the Supreme Court declared it unconstitutional to prevent suffering Canadians from getting medical assistance to hasten death.
Her courage showed me assisted dying should be legal in the UK so the terminally ill can have some control
By Anonymous
I gained great insight into the courage and tenacity it takes to go to Dignitas.
Some years ago, while working as a district nurse at a GP practice, one of the receptionists came to tell me she had just taken a phone call from the son of a patient to say he had returned from the Dignitas clinic in Switzerland. His mother, who had recently been diagnosed with a neurological condition that would kill her slowly, and with loss of dignity and independence, had taken her life there.
The reception staff were shocked. I was shocked. My team was shocked. I was dismayed that this lady, who I had known for a number of years, had to go to another country to receive the care she wanted and to die earlier than she should have.
The following day her GP asked me what Lily* had been up to over the past few days. You can tell from this perhaps that Lily was a lady who made demands on the surgery team. The GP was upset when I told her what had happened, and contacted Lily’s son.
I had known this lady for a number of years and looked after her husband when he returned from hospital after surgery. Lily would turn up at the surgery immaculately dressed and would not leave until she obtained what she thought would help him. I would sometimes receive a phone call from the surgery asking me to come back from my house calls to see her. I was not the only person at the surgery with whom she could be quite insistent. Yet even as she frustrated us all, I found it noble the way she fought for what she thought was best for her husband.
After he died I saw her only occasionally. A few years later her health deterioriated and I became involved in her care. Occasionally I found it frustrating when, in the middle of a clinic or housecall, I would be contacted to say Lily wanted to see or speak to me. Many a day on my way home I would have to call into her house to reassure her or deal with a problem.
After her diagnosis she was matter of fact as we discussed plans for her care and how to deal with her condition. She was living on her own and had no intention of “burdening” her children. Despite the fact that she could be difficult, I found her likeable with a very dry sense of humour and fun.
I found out later that before she died she had bought a new outfit to travel in, and been to a favourite view she and her husband used to visit and to a favourite restaurant.
The point of telling this story is that I gained great insight into the courage and tenacity it takes to go to Dignitas and that there should be a way of assisting someone who is of firm mind to take their own life in these circumstances. Perhaps if she had felt she would have had control of the situation in this country Lily would not have found it necessary to take her own life at all; certainly she would have had a longer life. I feel privileged to have known a very brave woman, even if she could drive me to distraction.
