I provide care for however long they have left, so they do not have to take their final steps alone
By Alexis Fleming
The last day we had with Osha the bullmastiff was hard, although perfect for her. We took her for her favourite walk, gave her a meal of her favourite food (pasta) and then lay in the garden in the sun with her, feeding her fruit chews, which she loved. Then the vet came and sedated her and put her to sleep. I was so sad , but I knew it was the right time to say goodbye.
I had heard about Osha through the charity I run, Pounds For Poundies, which tries to stop abandoned dogs from being put down in pounds. When I learned Osha had been dumped in the pound with terminal cancer, I had to take her in. This was October 2015, the same time my dog Maggie died suddenly in a veterinary hospital, which left me devastated. Maggie and Osha inspired me to set up the Maggie Fleming animal hospice, offering end-of-life care for animals, in Dumfries in March 2016. At the hospice, I provide them with a home, friendship, love, comfort and tailored vet care for however long they have left, so they do not have to take their final steps alone. The hospice is funded by charitable donations and I run it with help from my partner Adam, friends, family and volunteers.
Osha’s favourite things were food and sleep, so she spent her last nine months being spoiled with breakfast, lunch, dinner and snacks in bed. She loved to steal eggs from our rescued chickens; I would leave one on the doorstep so that when she went out for her late-night wees she would think she had found treasure.
The vet who put Osha to sleep helped me realise it was the right thing to do. She told me that she sees similar situations almost weekly, when owners are so desperate not to make that heartbreaking decision that they leave it too late and the animals die in pain. The point of the hospice is to avoid that scenario.
I look after a maximum of three animals at one time, so that I can provide the best care possible. It is very time-intensive. Some of the animals I have helped have lived all their lives in kennels, never been hugged or kissed and don’t know what to do when I cuddle them, although they are clearly desperate for affection. My day is busy in some ways – looking after the animals’ practical needs, feeding them and giving them medication or other required care – but it is peaceful in others. Old and sick animals need love and attention, so I spend a lot of time sitting with them, reading to them and cuddling them.
I also care for more than 80 animals at my sanctuary for farmed animals and rescue hens. Many have been worked to death, and they come here rather than the slaughterhouse.There is something so sad about animals that have never known life outside a pen or a cage.
We take animals from all over, but I cannot provide end-of-life care for all that need it, so I offer support to their owners instead. They can phone me 24/7 for advice. Often just talking to someone who understands their sorrow can help people through what can be one of the hardest decisions they ever have to make. Most importantly, it helps families to stay together until the end, which is the best outcome for everyone, especially the animal, which wants to be with the people it knows and loves. Knowing you have done right by your pet, giving back that love and loyalty as you see it safely to the end, is a huge responsibility and privilege.
I have just started an end-of-life care plan for Bran, another abandoned dog, as he is starting to slow down. He was abandoned on the street with a tumour on his spleen when he was about 17 years old. He was given six weeks to live when he came here; that was almost two and a half years ago. But his latest blood results show he is starting to slip into liver and kidney dysfunction. I sit with him for a couple of hours each day, washing his face with a warm cloth, which he loves, and giving him a massage to ease his muscles. I have promised him that when he tells me it is time to go I will listen. I will be there on his last day with all his favourite things and hold him as he slips away peacefully, knowing someone loved him to the last.
My friend Jacqueline Zinn was diagnosed with glioblastoma, a brain cancer, in 2013; she died 18 months later, at age 56, leaving behind a husband and four kids. Jacquie was a triathlete who knew a thing or two about endurance, and she managed her treatment — surgery, radiation and chemotherapy — with the same skill and organization she had brought to her work as a project manager for a drug company. Once she realized that she had only weeks to live, Jacquie began planning for the next chapter: her death and its aftermath.
And so “every night for weeks she wrote letters to our children,” her husband Doug recalled. Jacquie wrote multiple letters to each child, to be opened at different life milestones. Jacquie wanted to be “present with her kids,” he said, at each of those important moments
for what I jokingly call “The End” is not for faint hearts. War hero John McCain is said to have been disciplined and firm as he planned his funeral over the past year, including the singing of the Irish ballad “Danny Boy.” But few of us have that strength. Recently divorced, I needed to rewrite my will and my medical power of attorney as well as a host of other financial and medical documents. At almost every turn, I found myself crashing head-on into the wall of denial. Just last week, my attorney begged me to acknowledge that I was at least receiving her emails, even if I couldn’t respond to them. “Yes,” I replied, tersely. All this resistance, and I’m not suffering from any terminal condition.
That’s why Jacquie Zinn’s letters to her children seem heroic to me. After all, she did have a terminal diagnosis when she sat down to write what ended up being more than a dozen letters to her children, ranging in age from 11 to 21, and she knew her time was short. I first heard about the letters at her memorial service in 2013. This past spring, working on a book about death and dying, I reached out to her second-born son, Jerry, who was writing about the loss of his mother, to ask if he’d be willing to share his letters from her. He’d already gotten two — one soon after her death and one when he graduated from college — and after some hesitation, he said okay. Now 24, Jerry will get the final letter when he marries.
“The letters my mother left me are among the most precious gifts I possess,” he told me. “She diligently took the time, the very limited time, as her life was coming to an end to sit down and think about her children’s futures.”
So one day, in perfect cursive penmanship and blue ink after her oncologist told her she had only weeks left, Jacquie wrote her first letter to Jerry, then age 19, to be opened after she died. Here is a portion of it:
“Dear Jerry, my budding film-maker,
“I know you have a lot of emotions running through you, as I did when my father died, but I was much older than you at the time, so I really can’t begin to truly comprehend what you are feeling. I am so incredibly sorry that I had to die while you are so young and I assume it sucks for you. Perhaps you can use some of these emotions and feelings in your upcoming work(s), assuming you continue to pursue film.
“Let me assure you that I did absolutely everything I could to stay alive for as long as possible. I know you realize that having been with me at many of my treatments or tests. Plus the acupuncture, tons of praying I also did. But for some reason I just didn’t make it as one of the chosen ones to be cured. But because of what I did I’m sure I lived much longer than if I hadn’t been in good shape to begin with.
“I am incredibly proud of you for everything you have done in your relatively short life. I will be watching over you every day to see what new and exciting things you will accomplish — regardless of what occupations(s) you pursue over your lifetime.
“Do your best to support Dad and your siblings, especially during this first year as it will be the hardest for everyone. I remember that from when my father died. Time will certainly help, but it takes a long time to focus on the happy memories while the sad thoughts are more immediate and closer at hand.
“I had many fantastic years on earth, more than a lot of people, hence, I have no complaints. I survived a melanoma, car accident in the mountains of West Virginia with Uncle Jerry, car accident in Durham. So I have already lived many lives and I was extremely grateful for each and every moment. Try and live your life that way and you will be a happy and fulfilled human being.
“I love more than you will ever know, my dearest Jerry.
On the day Jerry graduated from the University of North Carolina at Chapel Hill in 2016, Doug handed over letter No. 2, written with the same pen, on the same type of note paper.
“My sweet dear Jerry,
“Well — this is it — a big milestone in your life — college graduation! Congratulations. I am so incredibly proud of you no matter what your major or minors. I know you made it worthwhile and got just exactly what you wanted to out of the experience. I know you learned an incredible amount about subjects and probably an even greater amount about people.”
Jerry said that at various times during college he had considered dropping out, but “knowing that I would never receive that letter if I did not graduate was a very strong influence in keeping me in school. The letter was a motivation for which I will be forever grateful.” Knowing Jacquie as I did, I’m certain that was part of her master plan.
In the second letter, Jacquie signs off with these words: “I am watching over you all the time, or at least I hope I can do that! Congratulations, again. Enjoy this fabulous day and all the celebrations around. Big Hugs and Kisses! Much Love, Mom.”
What a gift, an eternal gift, I thought as I read and reread the two letters. More than anything, I silently bowed in amazement, understanding how Jacquie had faced her own version of “The End.” Doug reminded me that she’d written her letters while in a wheelchair, paralyzed on one side.
With Jacquie’s example in mind, I finally sat down and read the pile of documents my lawyer had sent to me, realizing that my denial served no purpose. To my surprise, I found comfort in taking care of that necessary business — once done. I’d like to think that was something Jacquie felt, too, as she sent her missives into the future.
Dan Kuester and Kirsten Farnsworth had only been married for two months when Kirsten was diagnosed with cervical cancer. Between aggressive treatments over the course of the next five years, Kirsten and Dan built a life together: they finished graduate school programs, traveled, and adopted a rescue dog they named Sputnik.
But the cancer came back in the summer of 2017, and the couple knew it was time to accept facts: At 32, Kirsten was going to enter the last phase of her life.
They decided to hire an end-of-life doula — a death doula or death midwife — to help them through the process.
“I’ll admit neither of us was incredibly familiar with the idea of an end-of-life doula,” Kuester says. “We didn’t have any kids so we had no familiarity with doulas as far as midwives go.”
The term doula is often associated with birth, a Greek term that loosely translates to a woman helping another woman. Birth doulas are trained professionals who provide mothers with emotional, physical and informational support before, during and just after birth.
Death doulas do the same, just at the end of life instead of the beginning.
Across the country, programs are cropping up that teach people how to become end-of-life doulas, holistic caregivers who support those in the process of dying (and their loved ones) with a variety of services, from practical tasks like creating a plan for the final days of a client’s life, to the psychological work of internal and external forgiveness and acceptance. This is not hospice care, but something supplemental; while hospice care keeps patients comfortable with medication, provides relief through treatments and assesses ethical medical issues with the family, death doulas are more like traveling companions, there to walk with clients and families toward something wholly unknown.
An end-of-life doula can help with cleaning or cooking, run errands or just be physically present for a client to talk to about things loved ones just aren’t ready to hear — like the reality that the end is coming.
Boulder is home to one such end-of-life doula program. Tarron Estes founded the Conscious Dying Institute after a career working as a transformational learning consultant in health care systems showed her what it looks like to die in the United States.
“When I realized [health care systems] really weren’t talking about [death], I had a very strong vision: You will change the way people are cared for in senior communities,” Estes says. “It made sense to me that if I wanted to change how death is happening in America I would do what I do best, which is work with individuals and help them experience personal transformation that also gives them a career in end-of-life care and healing.”
Through the Conscious Dying Institute, students can complete several end-of-life education programs, including a two-phase, eight-day onsite Sacred Passage Doula Certificate Program.
Nicole Matarazzo was one such student. She went on to become a doula for Kirsten Farnsworth in her last months.
Matarazzo had spent most of her professional life working directly with death; after college as a child life specialist in pediatrics working with children who were born HIV positive, then with patients receiving bone marrow transplants.
She went on to teach kindergarten and become a massage therapist, then eventually, after having children, went to work in health care at elementary schools in Boulder, where she says her role was as much about providing emotional support to kids as it was about caring for illness and injury.
About four years ago, a friend of Matarazzo’s was diagnosed with cancer for the second time, and she asked Matarazzo to care for her in her remaining days.
For a year, Matarazzo walked through the last phase of her friend’s life with her. Without question, it was emotionally the hardest work Matarazzo had ever done.
“A few hours after we had called hospice to come and be with us, [a hospice worker] asked me, ‘Where did you get your training?’” Matarazzo says. “It prompted me to wonder: ‘Why did you ask me that? How are people dying in this town?’”
The answer from the hospice worker: “Often alone and scared.”
“I heard that as a message loud and clear,” Matarazzo says. “I knew at some point I would figure out how I was going to be a player in that arena, so that there are less people dying afraid and alone.”
Trends in American lifestyles have raised the risk of dying alone: the divorce rate for 55- to 64-year-olds doubled from 1990 to 2015, according to the National Center for Family & Marriage Research, and once divorced, people are remarrying less often. One study found that nearly 7 percent of U.S. adults 55 and older had no spouse or biological children, and that number is predicted to surge over the next 50 years.
Perhaps, then, it’s no coincidence the death doula movement is flourishing.
“I think it’s been slowly beginning, quietly, kind of a grassroots movement,” says Jeri Glatter, vice president of the nonprofit International End of Life Doula Association (INELDA) based in New York City.
“I think a big part of [the rise of the deal doula movement] is the people who said in the ’80s that they did not want to give birth a certain way — that they didn’t want to be put in a white hospital and have a white male say, ‘You’ll go to sleep, and you’ll wake up, and I’ll hand you a baby’ — I think those same people are turning 70 and 80 now, and there’s an awareness that they don’t want to die the same way; they don’t want to be disconnected from what’s happening.”
Glatter, like Matarazzo, came to her work after caring for a loved one at the end of their life. The experience, somewhat counter-intuitively, filled Glatter with a “sense of joy and enlightenment.” A friend said she should consider becoming a death doula.
“I Googled the term, as per my friend’s direction, and I found the Open Center in New York City,” Glatter says. “It was the only thing listed; one Google response to ‘death doula’ [at that time].”
At the Open Center’s Art of Dying Institute program, Glatter met Henry Fersko-Weiss, a clinical social worker who created the first end-of-life doula program in the U.S. at a hospice center in New York City in 2003. Fersko-Weiss had studied the work of birth doulas, not because he was interested in becoming one, but because he saw the parallels between supporting people at the beginning of life and supporting them at the end of life. After more than a decade of moving from hospital to hospital teaching his volunteer-based end-of-life doula program, Fersko-Weiss dedicated himself fully to the cause and opened INELDA in 2015.
“Our training and our model of care has always been based in this volunteer, being-of-service format,” Glatter says.
While INELDA teaches courses on business development for those who want to professionally practice end-of-life doula work, Glatter says these courses always focus first on providing ways to make care accessible to those who need it, through sliding scale fees, pro bono work and other forms of payment that may be available to people, like trading services.
“We focus first on what brought [a student] to this work and the meaning behind the work, [their] intentions with this work,” Glatter says. “The term ‘calling’ is probably the most common term we hear from people who take training and business development courses through INELDA. We try to keep that in the forefront of the conversation. After that there is the understanding that if you are approving a service and someone is in a position and wants that support through a higher practitioner, there’s nothing wrong with being paid for that.”
In early 2017, Fersko-Weiss told USA Today that trained and certified non-volunteer end-of-life doulas typically cost between $40 and $100 per hour, with flat rates often applied during a patient’s final days so that round-the-clock care can be provided. End-stage doula services, he said, range from $1,200 to $4,000.
Glatters says that she, Fersko-Weiss and INELDA president Janie Rakow have never charged for their work.
Some doula training organizations are focused solely on training volunteers, like the nonprofit Doula Program to Accompany and Comfort in New York, which has been operating since 2001. Each year the program accepts between 13 and 15 volunteers from an application pool of 300 or so. These volunteers go into hospitals and meet with patients at least once a week through their dying phase.
To executive director Amy Levine, end-of-life doula work is about “lending our humanity.”
“We can do this for each other as human beings,” she says. “Even just 15 minutes together every week. It changes both lives.”
Nicole Matarazzo says determining appropriate payment for her services is an ongoing learning process, and she works to provide as much pro bono work as she can.
“My biggest challenge as a death doula is the exchange of money because this work to me is so sacred,” she says. “Having the conversation around what I do makes me nervous because there’s integrity and accountability around what I do.”
Becoming a certified doula can be pricey as well. The End of Life Doula Certificate offered at the Conscious Dying Institute costs $2,995 and provides nurses with 66 Continuing Education for Nurses (CNE) credits. At INELDA, it costs $750 to attend a two-day training, $100 for a current membership in INELDA, $35 to request a certification packet, and a $75 application fee, bringing the total to $960.
Currently there is no regulatory body that standardizes practices around end-of-life doula work, but most programs offer similar courses structured around providing emotional and spiritual support, assisting with unfinished business, creating visualizations, deciding how the space will look and feel at the time of death, designing rituals, developing a vigil plan and any other nonmedical gaps in care. There’s no regulatory agency for birth doulas, and most end-of-life doulas feel such an agency might limit access.
“As soon as hospice became a Medicare benefit it got whittled down year after year until it became so hard for people to get what they need,” says Tarron Estes of Boulder’s Conscious Dying Institute. “What I hope is that my work goes more and more into health care systems so that people who are on the front line can have this kind of training, so that they are supported to be who they are and they can stand for wonderful, beautiful deaths. I want CNAs to have end-of-life certifications. I want systems like Kaiser to work with me to figure out how to do a training for their employees so … more of this work can get in the minds, bodies and hearts of people that are called to do this work.”
The interest in improving end-of-life care is even beginning to infiltrate medical schools, where students are required to attend a birth, but not a death. Atul Gawande, a surgeon in Massachusetts, is leading the charge to improve education about end-of-life care at Massachusetts’ four medical schools: Harvard University, Boston University, Tufts University and the University of Massachusetts Medical School.
One thing seems certain: the need is there.
When Kirsten Farnsworth passed on May 30 of this year, her husband Dan Kuester helped his mother-in-law wash Kirsten’s body with essential oils, an ancient ritual that Nicole Matarazzo, as their doula, suggested. Kuester said that of all the planning Matarazzo helped with — visualizations, planning for the vigil and emotional support — washing the body gave him the most peace, the closest thing he can describe as “closure” on an experience that never truly ends.
“Nicole, I think partly by virtue of the fact she could come in and not be responsible for Kirsten’s physical health, it made it easier to trust her in an advisory role,” Kuester says. “She also brought a mindful and compassionate and extremely calming presence. I think both Kirsten and I felt much calmer on days when we would have meetings with Nicole, being able to plainly state what it’s like, some of these things that were in front of us that we weren’t completely sure of how it was going to go. She did a great job of showing us how it was, how these experiences were going to go and what options we have to impact the ways the experience goes.”
Death, reminds Tarron Estes, is not a medical event.
“It’s just sad because we don’t know how to be with death anymore,” she says. “Thank God we’re all beginning to think about how to do this better because none of us, myself included, people who have had the benefit of transformational work and sustainable energy and sustainable lifestyles and all the bells and whistles that a Boulder person and people who are conscious have had all their life, even most of us don’t think about it and don’t know what else there is to do. Believe me though, we’re going to be wanting to know about it.”
Dr. Shoshana Ungerleider is bringing together a cross-disciplinary set of minds to reimagine what dying in America looks like today starting with palliative care in the United States. After years of seeing how the system provides less-than-desirable services to patients and their families, Ungerleider extended her career as an internist at one of the best teaching hospitals in the country to focus on awakening a global movement with the End Well Foundation.
Born just outside of Eugene, Oregon, Ungerleider never thought she would become a doctor. Majoring in science with a focus on marine biology, she very quickly realized that she preferred interacting with humans and took her career in a different direction. It was a chance internship at Duke University that sparked an interest in medicine. With the support of her mentors, she applied and completed medical school at Oregon Health & Science University in Portland.“I always knew that I wanted to be in service of other people in some way, I just didn’t know what that looked like,” Ungerleider said. “It was always very important to me. “I realized medicine was the path for me.”
Ungerleider completed her residency program at California Pacific Medical Center in San Francisco. After a rotation in the ICU, she realized that most of her patients were older, with chronic diseases and in a state that was not going to drastically improve. “Nothing that we were going to do for them was actually going to help them,” Ungerleider realized. “We were not turning back the clock on their age, we were not going to be able to cure their cancer that was widely metastatic, and we couldn’t give them a new heart.” Many of her patients were suffering and dying, hidden away from people they love, she found. And they and their families were not provided with options or a conversation about what was going on. “I realized that it’s sort of the default thing that we do in this country—no matter how old you are, no matter how sick you are, you will be admitted to an ICU, even if it won’t help you,” she said. She soon asked herself, What is the bigger picture? What is it that doctors are meant to do for patients, and are we doing that for everyone we serve?
Per a 2016 study in the Journal for American Medical Association, a peer-reviewed medical journal, 70 percent of doctors surveyed in the U.S. said they have not been trained to have difficult conversations with patients. “If communication is one of the biggest parts of the job, then how is it possible that the least amount of time is spent on exactly that,” pondered Ungerleider.
She discovered that there was a hugely under-recognized, epidemic happening in hospitals for patients to truly have human-centered care, with a lot of that being directed toward serious illness and end-of-life conversations. And, this is especially important when doctors are trained. “As physicians in training, we are often the very first people to see a patient when they come to the hospital. It’s actually possible to change the course of their treatment trajectory if physicians know how to have conversations with patients and their families based on their goals and understanding what it is that they value in their lives. Much of that doesn’t get translated into the care that they receive, and we must do something about that,” said Ungerleider.
In shifting her own conversations with patients, Ungerleider started a clinical program to train residents and medical students to have competence in palliative medicine starting with communications training. Palliative care is a field of medicine that is fairly new, a multidisciplinary, approach to medical care that is focused on quality of life for patients and their families facing terminal illnesses. Providing necessary support and comfort beyond hospice, palliative care can be used at any time during the course of an illness.
Ungerleider’s work with the hospital’s foundation inspired the inception of her own foundation, focused on bringing awareness and public engagement to the systemic change that is necessary for people to live life more fully to the very end. “I was interested in creating a shift in how society motivates people to have conversations about this topic with people they love, so that if they do end up in a situation where they are receiving medical care, the care that they get is the care that they want. I want everyone to understand their options, and how to make decisions in line with their goals and the values of how they live their lives. That, to me, is good medicine, whether we’re talking about diabetes care and high blood pressure or about the end-of-life experience,” she said. In 2014 , Ungerleider started the Ungerleider Palliative Care Education Fund to do exactly that. With the mission to further palliative care education at every level. In collaboration with the California Pacific Medical Center Foundation, the Ungerleider Fund initiated a comprehensive education program to enhance medical training around advanced illness and end of life care, physician communication and wellness for healthcare providers at Sutter Health’s California Pacific Medical Center. The foundation has financed the production of two films, both acquired by Netflix—End Game (with directors Rob Epstein and Jeffrey Friedman) and Academy-Award nominated Extremis (by director Dan Krauss) both —with the goal of educating and expanding the thinking around decision making, palliative and end-of-life care.
When asked about how her foundation became a reality, Ungerleider notes she would go to conferences around the country and meet exceptional people working in palliative care, across policy, hospice or caregiving. “They were and have been doing incredible work, yet it was always the same people. I noticed that we do a lot of ‘preaching to the choir’ in this field and don’t get outside of our traditional spheres of influence to engage other people in a conversation,” she said.
To expand the conversation beyond the medical field, in 2017, Ungerleider launched a one-day, TED-style symposium, End Well, with this very thought in mind. She asked herself, How do we create an opportunity to bring together not just those practicing palliative care but include a cross-disciplinary set of professionals working to amplify this topic through their individual work? Creating a discourse of this nature has opened up unique opportunities to bring the public and private sectors together to more deeply understand the opportunities that exist for patients.
“I feel so strongly that death and dying are not just a medical issue but a purely human issue that behooves all of us to get invested in this conversation,” Ungerleider said. ”My goal with End Well is to bring new voices into the fold, to hear from entrepreneurs who think differently about this space, to hear from patients, caregivers, artists, educators, and my fellow colleagues in medicine, too. We need to lower the barriers of entry to this conversation because we have a wide-open space to innovate new solutions: We have 10,000 baby boomers turning 65 every day in this country. It’s a looming crisis.”
As Ungerleider gears up for this year’s End Well Symposium on December 6th in San Francisco, she attributes the following elements to her success:
Listen first: “Within the first 60 seconds of meeting a patient, I can often learn more by simply listening than by talking. For patients to be engaged in their own health, they must understand their diagnosis, treatment and potential outcomes. This starts with listening to them,” she said.
Focus, focus, focus: “One of the things that my husband has instilled in me is being very goal-oriented, so I’m hyper-focused around palliative care, hospice, end-of-life—that is all that I do. My mission is to have conversations about mortality be so commonplace that I don’t need to do this work anymore, that palliative care can go away as a field because how all medicine is practiced is good medicine. That is my end goal and everything I do; I align with that goal,” she said.
Be open to opportunities: “I never imagined I’d end up running a foundation, executive producing films and starting international conferences. The opportunity to be part of the films was unexpected and it’s because I remain open and curious about how new opportunities play into advocating the work I’m doing.” Ungerleider said.
Oregon’s 1994 Death with Dignity Act (ORS 127.8 ff) was the nation’s first law authorizing mentally capable, terminally ill adults with 6 months or less to live to request a doctor’s prescription for medication they could decide to take to peacefully end their suffering if it became unbearable.
It was enacted in 1994 and taken into effect in 19971.Since then, 6 more states—Washington, Montana, Vermont, California, Colorado, and Hawaii (Hawaii’s law does not take effect until Jan. 1, 2019) and the District of Columbia (DC)—have authorized medical aid in dying. Pies and Hanson, in a recent article in MD Magazine® (July 7, 2018), presented 12 myths (sic) about this medical practice.2
I practiced family medicine in a small rural Oregon town from 1977 to 2012. In 1999, a patient asked me if I would honor his request for a “death with dignity.” He was a long-time patient who was dying of cancer; he had had surgery, radiation, and chemotherapy, but his cancer was incurable and advanced. He was enrolled in hospice, but his symptoms became intolerable, leading to his request to me.
At that time, I had been in practice for more than 20 years. I did ultimately prescribe the aid-in-dying medication, and he died very peacefully at home with his wife and children at his bedside. They continue to thank me now, almost 20 years later.
Those of us who have participated in the practice of medical aid in dying have a different perspective than those who theorize about it. Pies and Hanson cite a 20-year-old article3 regarding the psychological and emotional effects upon US oncologists who participate in euthanasia and PAS. In fact, euthanasia—which unlike medical aid in dying requires someone other than the dying patient to administer the medication—is illegal in the United States. In my role as the National Medical Director for Compassion & Choices and our Doc2Doc consultation program, I speak to scores of physicians who have practiced medical aid in dying.
All of them are sincere, all are compassionate, none of them take this action lightly, and none have reported instances of regret or depression.
1)People who request medical aid in dying usually do so because they are experiencing loss of dignity, anhedonia, and inability to control the “end of their life story.”
Pies and Hanson are correct in reporting that pain is not usually in the top 3 reasons why individuals request medical aid in dying in both Oregon and California. Autonomy is no. 1: these individuals are suffering, dying persons who feel that they have no control over their imminent death (which their physicians confirm). They do not want to die in a hospital. They are knowledgeable of their options. They do not want to depend upon others for symptom management, and indeed, by their own report, their symptoms are unmanageable.
Pies and Hansen report that many patients who request medical aid in dying are clinically depressed, but this assertion is false. By law, they are required to be evaluated for the mental capacity to make rational decisions by their physician and a second (consulting) physician. In addition, they often are in hospice, so they also are evaluated by their hospice medical director, their hospice nurse, their chaplain, their social worker, etc. They do not have a major depressive disorder; rather, they are grieving normally. They cannot “be successfully treated, once properly diagnosed.”1 They are terminal.
2) In Oregon, 6 other states, and D.C. with similar laws, there are adequate safeguards to ensure proper application of medical aid in dying.
Oregon’s Death with Dignity Act, now in effect for 2 decades, is analyzed annually by the Oregon Health Authority1 and it has never needed to be changed. It adequately protects individuals from coercion, abuse, or inappropriate use. Why is this statement true? There are core safeguards in place to protect vulnerable populations, so many in fact that they are also recognized as significant barriers for dying people to access the law. Many dying patients in Oregon are unable to utilize the Death with Dignity Act because they die before the entire process can be completed and doctors can be reluctant to practice because of the paperwork.
3) The conversation about the option of medical aid in dying is palliative in and of itself
A healthy doctor-patient relationship is founded upon open communication and trust. In end-of-life care, the ability to discuss all options allows for exploration, and hopefully, fulfillment of the patient’s wishes and values. Many patients and doctors discuss medical aid in dying, even if the patient ultimately does not make a request for a prescription. Physicians who are willing to openly explore a patient’s requests can learn much that can help her or him to provide quality care at the end of life.
In all jurisdictions where this palliative, end-of-life care option is authorized, approximately two-thirds of patients who go through the process required by the Oregon Death with Dignity Act ultimately take aid-in-dying medication; one-third do not take the medication,1 but they want to know that they have the option to use the medication if needed, hence, they are palliated.
4) Not all suffering can be satisfactorily treated with palliative medicine or hospice care
Quality hospice care and palliative care have improved the end-of-life experience of thousands of patients, and advances in end-of-life care continue. More improvement and resources should be dedicated to this cause. But not all suffering can be assuaged. Suffering is defined by the patient, not the doctor.
5) Doctors who conscientiously oppose medical aid in dying are free not to practice it.
Pies and Hanson discuss conscientious objection to medical aid in dying “in theory” based upon “guidelines.” Physicians who are not willing to participate in end-of-life care option are free not to practice it if it conflicts with their conscience; there is no law that requires otherwise. However, a licensed physician is bound to practice professionally and under the standards of care in their location. A professional “puts the patient first.
If a licensed physician (who does not support a patient’s option to decide to use medical aid in dying) has a request by a patient for this end-of-life care option, her or his obligation is to refer the patient to another physician for evaluation of the request. Ironically, many physicians in Oregon who do support this option for their dying patients, are unable to provide it because they are employed by healthcare systems that prohibit their doctors from practicing it. Thus, rather than physicians being coerced to practice medical aid in dying, they are prevented from honoring their dying patient’s request for it.
6) Language matters: medical aid in dying should not be called “suicide,” or “assisted suicide”
Legally, in all jurisdictions where medical aid in dying is authorized, “it is not suicide, homicide, euthanasia, or mercy killing.”1
David Pollack MD, a psychiatrist at Oregon Health & Science University School of Medicine in Portland, OR, stated that a “growing body of evidence clearly distinguishes the characteristics of persons who commit suicide resulting from mental illness from those of terminally ill persons who request medical aid in dying.
“These differences include the type and severity of psychological symptoms, degree of despair, reasons for wishing to end one’s life, communicativeness regarding their wishes and fears, degree of personal isolation, openness about the wish and intended method to end one’s life, and the impact on the person’s family or support system following the person’s death.”4
Furthermore, there is no place in end-of-life care for language that is hurtful, angry, shaming, or that causes guilt. Language matters.
7) People requesting medical aid in dying are carefully screened to rule out depression that impairs judgment
Pies and Hanson are correct in reporting that most medical aid-in-dying statutes do not require a professional mental health examination, “except when the participating physician is concerned and decides to do so.” Such a requirement is unnecessary because doctors are experts in evaluating the mental capacity of their patients to make informed healthcare decisions.
Doctors make these assessments every day in routine matters and matters of life and death. And if 1 of the 2 doctors evaluating the mental capacity of a patient requesting medical aid in dying wants a third mental capacity evaluation by a mental health professional, they can easily request it. It’s important to note that all of these terminally ill patients and their families are sad, and normally grieving. But most patients do not have mental illness or a major depressive disorder. By virtue of their State Medical License, physicians who are involved in primary care are competent to diagnose mental illness, including depression that causes impaired decision-making.
8) In the United States, only people with terminal illness are eligible for medical aid in dying
In Oregon and in all jurisdictions where medical aid in dying is authorized, individuals who receive an aid-in-dying prescription must meet the eligibility criteria, including having a terminal illness. This diagnosis is determined by the attending physician and the consulting physician. In each case, these licensed doctors consider the individual situation.
A diabetic who does not want to take insulin is not a candidate; someone with anorexia nervosa, by definition, has a mental illness. Advanced dementia precludes participation because the patient is not mentally capable of making their own healthcare decisions. When a patient requests medical aid in dying, the physician investigates all of the intricacies of the request. If the patient has a disease that can be reasonably treated (diabetes, early cancer, etc.), this end-of-life care option is not appropriate.
Hence, the value of 2 physicians working in concert is not only the case, but also the law, in Oregon.
9) The basic requirements for medical aid in dying have not changed in more than 20 years
After more than 20 years of medical aid-in-dying experience in Oregon, there now is ample accumulated experience to show that the law has been safely and successfully implemented.5 In fact, ORS 127.8, the Death with Dignity Act, has not been changed, amended, or altered. Those who theorize that abuses are possible seem more concerned with “what if” than with “what is.” Experience and evidence outweighs speculation.
In point of fact, the practice of medical aid in dying in Oregon (and in others states with similar laws in effect) has catalyzed improvement in end-of-life care, a much broader discussion of end-of-life care issues, more frequent conversations between physicians and patients about their end-of-life care wishes and goals, doctor-patient relationships, and the awareness of and participation in hospice and palliative care services.
10) Since Oregon’s Death with Dignity Act took effect in 1997, more people have not died, but fewer have suffered
Since the Oregon Death with Dignity Act took effect in 1997, a total of 1967 Oregonians have had prescriptions written under the law, and 1275 patients have died from ingesting the medications.
During 2017, 143 patients used medical aid in dying, and the estimated rate of Death with Dignity Act deaths was 39.9 per 10,000 total deaths,1 which is a similar percentage to previous years. All of these patients were about to die (had a prognosis of 6 months or less to live) and had the comfort of knowing that they could determine the final chapter of their life if their suffering became unbearable.
Pies and Hanson concluded that “it is critical that physicians inform themselves as regards the actual nature and function … of medical aid-in-dying legislation.” I heartily agree. However, their “first step” is to “recognize and challenge the many myths that surround these…laws.”
I believe that a better first step is to learn the facts about medical aid in dying, not theoretic myths. Louis Pasteur, MD, wrote, “One does not ask of one who suffers: What is your country and what is your religion? One merely says: You suffer, that is enough for me.” A dying patient needs respect, and our comfort. We may have thought that we were trained as “healers,” but when a cure is no longer possible, care and comfort are paramount.
Funeral customs are changing dramatically, leaving families with more decisions to make at just the moment they may be least prepared to make them. Making decisions ahead of time honors “ancient wisdom.”
Yogi Berra once quipped, “The future ain’t what it used to be.” If there is a time that I see church parishioners facing Yogi’s confused logic, it is when dealing with decision making for a funeral and burial of a loved one. American culture is going through a tumultuous season of cultural change. The last time that people want to deal with more change is during the loss and grief of a loved one’s death. But the reality is that the American funeral experience has changed and is continuing to change dramatically.
When I performed my first funeral in 1993, there was a certain set of expectations for what would happen when someone died. It almost always went like this. Three days after the person died there would be a funeral, or rarer then, a memorial service (a worship service without the body of the deceased). The evening before the funeral there would be a visitation at the funeral home to view the body and share condolences with the family. Usually at 11 a.m. or at 2 p.m. the funeral would take place at the church. Then the family, followed by friends, would drive in procession with headlights on to the cemetery for a brief committal service. After the committal the family returned to the church for a meal and time to visit. On occasion I have been invited to drop by the family home afterwards when all had been finished and there was nothing left to do but sip bourbon and visit.
Yes, this is a very Presbyterian, and a very Southern Presbyterian funeral experience. We value brevity when it comes to funeral worship services, and we value lingering when it comes to visiting afterwards. Of course, there are many variations on a theme played out in different religious traditions, and all of them have their strengths and weaknesses. I admire the African-American Baptist tradition, which has been able to resist many of the negative consumeristic trends involved with funerals, but I do not possess the proclamatory wind to preside for several hours over a funeral service.
Things have certainly changed from when a traditional schedule was the expected norm. There are many reasons for the changes that now often require families to design their own funeral rituals. One of the most significant is that in 1970 only 5% of the American population was cremated after death. Last year 55% chose cremation. The cost of burial with embalming of the body, metal casket and metal vault can run about $11,000, and of course this has been a motivating factor for choosing cremation.
Not too long ago I performed a funeral for the beloved family doctor of his remote rural village. He had made all the arrangements well in advance of his death. Ben was buried in a simple pine box that he had made himself and was interred on a hill at the back of his farm. He had a friend who had prepared his body after death and kept the body refrigerated until his family could see it. The doctor was a keen environmental steward of his farm as well as his community, and he did not wish to add the mixture of formaldehyde, methanol and humectants to the soil of his farm. This makes me wonder what really is traditional after all, because the doctor’s method would have been common place before industrialization and the Civil War. (Check out this website for different state requirements for a funeral at home.)
Ben was on to something. Think about what you would like your funeral to be. Talk to others about it. Don’t get scared off by our American cultural reluctance to have a conversation about death. Do you want to be cremated or embalmed? There are other options now to cremation than burning the body; it can also be done with water. Do you want a religious service to mark the occasion? What will be most helpful for your surviving family? I think that religious services can be deeply moving and genuinely helpful for people. But I should think that. I am a pastor. I know that this is not true for everyone. The point is to think about this beforehand and share with your family what is important to you and make plans for it.
Let me put in a word for funeral home directors. It has been my good fortune to be friends with a couple of them and a golf partner with one of them. I have often heard terribly negative caricatures of funeral home directors, most of the time from people whose only experience has been attending a few funerals. My experience has shown them to be people who pursue their work as a calling. I have watched them at times provide funeral services for poor families with disregard to the business end of their work. If you are interested in learning what a funeral director’s life is like, then read Thomas Lynch’s The Undertaking: Life Studies from the Dismal Trade. He is an American Book Award winner writer and a funeral home director in his small town of Milford, Michigan.
Lynch gives us, who live in what is often a death-denying culture, this sober reminder.
This is the central fact of my business – that there is nothing, once you are dead, that can be done to you or for you or with you or about you that will do you any good or any harm; that any damage or decency we do accrues to the living, to whom your death happens, if it really happens to anyone. The living have to live with it. You don’t. Theirs is the grief or gladness your death brings. Theirs is the loss or gain of it. Theirs is the pain and pleasure of memory.
The practical wisdom of these words reminds us that when the time finally comes for you or for me as it will for us all, water cremation, fire cremation, embalming, metal vaults, pine boxes, columnbariums, floral wreaths, funeral homilies, favorite hymns, presented flags and headstones will not matter to us. But some of these things will matter and give meaning to those who survive us.
I realize I’m not making any of this process easier. That’s my point. It’s not easy. And the ever-growing options only make for more complicated decisions. But reflecting upon death and dying and thinking about what our end will be like for others make us better human beings. And that is nothing new at all. That is ancient wisdom.
As a society, we are not very sophisticated when we talk about serious illness and death. We talk of fighting, of battling against, of staying positive and of not giving up.
Of course, this has implications for those whose illness continues or worsens. Are they losing the fight? And what does it mean about their attitude? Have they given in?
In our research, recently published in Palliative Medicine, we found the power of language is particularly poignant when it comes to how clinicians talk about end of life care. It can lead to misunderstandings, but also sadly, even tragically, to suffering and missed opportunities.
We’re looking into this at the Victorian Comprehensive Cancer Centre’s Palliative Medicine Research Group. Based at St Vincent’s Hospital Melbourne, our group brings together clinicians, researchers and allied health professionals, seeking to effect positive and systemic change in palliative care practice.
Our language around illness is reflected in the media, as we read with excitement of “a breakthrough in the fight against cancer/dementia/heart disease” – insert your illness of interest.
However, palliative care in the media and in the lives of real people, of patients, is often discussed as “there was nothing more that could be done, so they went into palliative care”.
The language that we use has direct and very serious consequences. To say that “there was no more treatment, so they had palliative care” implies that palliative care is not treatment. This language serves to limit possibilities since it negates the opportunity to choose palliative care, and the benefits that it may provide.
Why does this language matter?
Well firstly, it propagates a misperception about palliative care. Contrary to “no more to be done” and “non-treatment”, palliative care is highly effective and beneficial.
It has been proven in clinical trials to ensure better pain and symptom relief and, for many, means better quality of life than when patients are solely cared for by usual health providers such as oncology, respiratory and cardiology services.
Palliative care has also been shown to improve patients’ satisfaction with care, as they have more information and understanding of their circumstances and the choices available to them. It means they are empowered to make decisions that match their values – which, for many, means less time in hospital, and being more likely to die at home.
Research has shown that palliative care means that when people do die, their families experience less distress and have better health outcomes themselves.
And it means, based on a number of studies, that people live longer. Yes, palliative care improves survival – as much as a number of newer chemotherapy treatments. And all of these benefits increase if palliative care is introduced early.
None of this sounds like “no more can be done” or a “non-treatment option”. Yet because of the language used and the associated stigma, patients (and doctors) are fearful of mentioning palliative care, much less to introduce it early.
Instead, patients think that palliative care equals death, and worse still, death in an institution “where people do things to you”, as one of our research participants said; where there are no choices.
This is the very antithesis of what palliative care seeks, and is proven to do.
And so, as if even the words ‘palliative care’ will themselves, bring about death, we avoid it until death is very close. Palliative care, raised in these circumstances, becomes linked with imminent death, and the cycle of misperception and missed opportunities (and poor care) continues.
These missed opportunities may include a lifetime of valuable things to be said to someone we love, a trip to a special place, or a chance to think through whether a further round of treatment will enable achievement of an important goal.
And poor care may include pain that is not well managed for six of the last eight months, or a young child that wonders if Dad’s illness was caused by something they did.
So what needs to be done?
We need to listen to the evidence. We need to think about the language that we use to speak about illness and death, to think about its impact for readers of today, and for patients of tomorrow.
We need to be sensitive and direct. And we need to learn to sit with the discomfort that not all is black or white, fighting or giving up, treatment or no treatment. That things that are hard to consider and face will inevitably mean hard conversations are to be had.
These conversations, though difficult, can be immensely rewarding and also may be the most important conversations for a person’s life. We all have a responsibility and a role to ensure our language facilitates understanding and choice, not its opposite.