My hospice patients were dying, but they still longed for fresh air and birdsong.
By Rachel Clarke
A furrowed brow and flailing arms were all we had to go on. The grimacing, the way the patient flung his head from side to side — all of it signified an unvoiced anguish. We tried talking, listening, morphine. His agitation only grew.
All cancers have the power to ravage a body, but each assails in distinctive ways. One of the particular cruelties of a cancer of the tongue is its capacity to deprive a person of speech.
Some of us thought he must be suffering from terminal agitation, a state of heightened anxiety that sometimes develops as the end of life draws near. But the junior doctor on the team, Nicholas, was convinced that we could unlock the source of our patient’s distress and volunteered to stay behind in the room.
Nicholas reappeared about an hour later. “You can understand his speech,” he announced. “You just have to really listen.”
When I re-entered the room, the reclining chair that the patient — a tall, angular man in his 80s — had been thrashing around in had been turned to face out onto the garden and the double doors were open wide. Now he sat calmly, transfixed by the trees and sky. All he had wanted was that view.
For a decade, I have worked as a doctor in Britain’s National Health Service. We are an overstretched, underfunded health service in which too few doctors and nurses labor with too few resources, struggling to deliver good care. Burnout among staff is endemic, so much so that it threatens to stifle the kindness and compassion that should be the bedrock of medicine.
But then there are the moments when helping someone is easy: Just nature is enough.
Before I specialized in palliative care, I thought the sheer vitality of nature might be an affront to patients so close to the end of life — a kind of impudent abundance. And yet, in the hospice where I work, I am often struck by the intense solace some patients find in the natural world.
I met Diane Finch, a patient, in May, on the day her oncologist broke the devastating news that further palliative chemotherapy was no longer an option. She was 51. From that point on, her terminal breast cancer would run its natural course, medicine powerless to arrest it.
“My first thought, my urge, was to get up and find an open space,” she told me on that first meeting. “I needed to breathe fresh air, to hear natural noises away from the hospital and its treatment rooms.”
At first she fought to preserve herself digitally, documenting every thought and feeling on her computer before they, and she, were lost forever. But one day, as she was typing frantically, she heard a bird singing through her open window.
“When you come to the end of your life, you get the sense that you don’t want to lose yourself, you want to be able to pass something on,” she told me later. “When I had whole brain radiotherapy, I felt as though something had dropped out, as if everything I said needed to be saved. It was all running away from me.
“Somehow, when I listened to the song of a blackbird in the garden, I found it incredibly calming. It seemed to allay that fear that everything was going to disappear, to be lost forever, because I thought, ‘Well, there will be other blackbirds. Their songs will be pretty similar and it will all be fine.’ And in the same way, there were other people before me with my diagnosis. Other people will have died in the same way I will die. And it’s natural. It’s a natural progression. Cancer is part of nature too, and that is something I have to accept, and learn to live and die with.”
Ms. Finch recorded a song based on the peace she felt listening to the bird song, and it was enough to bring her some relief from what — up to that point — had been almost feverish efforts at self-preservation.
Another patient, whom I admitted in July with about a week to live, was mostly concerned that I keep the windows open, so that he could “keep on feeling the breeze on my face and listening to that blackbird outside.” I rushed to make sure of it.
Shortly before his death from pancreatic cancer at 59, in the 1990s, the British playwright Dennis Potter described the exaltation of looking out at a blossom that had become the “whitest, frothiest, blossomest blossom that there ever could be” from his window.
“Things are both more trivial than they ever were, and more important than they ever were, and the difference between the trivial and the important doesn’t seem to matter. But the nowness of everything is absolutely wondrous,” he told an interviewer.
People often imagine hospices to be dark and dismal places where there is nothing left to experience but dying. But what dominates my work is not proximity to death but the best bits of living. Nowness is everywhere. Nature provides it.
She’s only seventeen but after battling incurable progressive muscle atrophy for several years, Ankita looks like a ghost already and she knows it. An avid internet surfer, she knows death is very close and there are two questions she’s researching almost obsessively these days. What will happen to my soul after I die? Is there life after death? These are in fact questions which have been of supreme interest for both healthy and ailing people since ancient times. I shared with brave Ankita the recent 4 September issue of Conscious Lifestyle magazine which carries a fascinating article excerpted with permission from “The New Science of Psychedelics: At the Nexus of Culture, Consciousness, and Spirituality” by David Jay Brown, a master’s degree holder in psychobiology from New York University, a former neuroscience researcher at the University of Southern California and author of more than a dozen books. The article shares insights from the world’s top scientific and spiritual experts on whether there is life after death, insights which are so interesting that they’re worth summarisng for readers.
Ram Dass, Psy.D, spiritual teacher, former Harvard professor and LSD research pioneer said as part of his reply, “From a Hindu point of view, consciousness keeps going through reincarnations, which are learning experiences for the soul. I think what happens after you die is a function of the level of evolution of the individual… All the Bardos in the Tibetan Book of the Dead are about how to avoid getting caught in the afterlife… To me, it’s all an illusion—reincarnation and everything—but within the relative reality in which that’s real, I think it’s quite real.”
Mathematician and physicist Peter Russell, author of The Global Brain, said “…a lot of our concerns about life after death come from wanting to know what is going to happen to this ‘me’ consciousness. Is ‘me’ going to survive? I believe that this thing we call ‘me’ is not going to survive… in the end it’s going to dissolve. A lot of our fear of death is that we fear this loss of ‘me-ness’… It’s interesting that people who’ve been through the near-death experiences and experienced this dissolving of the ego and realised that everything is okay when that happens, generally lose their fear of death…”
Pediatric surgeon and physician Bernie Siegel, author of Love, Medicine, and Miracles, said: “I believe in life after death. I think this shows in animals too. There’s a certain wisdom that they have. What I am sure happens to consciousness after death is that it continues on… I personally believe from my experience, for instance, that one of the reasons I’m a surgeon in this life is because I did a lot of destruction with a sword in a past life—killing people and animals… at a deeper level I chose to use a knife in this life to cure and heal with rather than kill with…”
Physician and Consciousness Researcher Larry Dossey, author of Healing Words: The Power of Prayer, said: “…we are led to a position, I think, where we see that even though the body will certainly die, the most essential part of who we are can’t die, even if it tried—because it’s non-locally distributed through time and space… Death is no longer viewed as the total destruction of all that we are… but the thing that really gets my juices flowing is the implication of this research for immortality… The fear of death and whether there is life after death has caused more pain and suffering for human beings throughout history than all the physical diseases combined. The fear of death is the big unmentionable—and this view of consciousness is a cure for that disease, that fear of death.”
Doctor, developmental biologist and psychedelics researcher Rick Strassman’s book DMT: The Spirit Molecule makes a convincing case for the possibility that endogenous DMT in our brains helps to usher our souls in and out of our bodies. His take: “I think life continues after death, but in some unknown form… a lot depends upon the nature of our consciousness during our lives—how attached to various levels of consensus reality it is. My late/former Zen teacher referred to like gravitating toward like in terms of the idea of the need for certain aspects of consciousness to develop further, before it can return to its source. That is, doglike aspects of our consciousness end up in a dog in a life after death, humanlike aspects get worked through in another human, plantlike aspects into plants, and so on.”
Parapsychologist and consciousness researcher Dean Radin, author of Supernormal: Science, Yoga, and the Evidence for Extraordinary Psychic Abilities, said as part of his reply: “… as to some kind of a primal awareness—life after death—I think it probably continues… when you go into a deep meditation and you lose your sense of personality, that may be similar to what it might be like to be dead… If there’s anything that psychology teaches it’s that people are different. So I imagine that there may be as many ways of experiencing after-death as there are people to experience it. And no one explanation is the ‘correct’ one.”
Biochemist, cell biologist and parapsychologist Rupert Sheldrake, author of A New Science of Life, said: “… I think our minds extend beyond our brains in every act of vision… when we die, it’s possible, to my way of thinking, that it may be rather like being in a dream from which we can’t wake up… It’s possible that we could go on living in a kind of dream world, changing and developing in that world, in a way that’s not confined to the physical body. Now, whether that happens or not is another question, but it seems to me possible…”
In Brown’s words, “Death is, perhaps, the greatest mystery known to human beings. While there is compelling evidence that there is life after death and that consciousness survives death, there is also compelling evidence that it does not and the truth is no one knows for sure what happens when we die.” That’s exactly what young Ankita, preparing for death, felt after reading the excerpted bits in Conscious Lifestyle. And yet account after account from a variety of sources underlines the reality of life after death, the reality of other worlds. As parapsychologist Sheldrake theorised, it may be that expectations affect what actually happens. It’s the “may be’s” that will ensure, as they have done down the ages, that the mystery of life and death remains eternal till researchers crack it. But will that ever happen? May be.
Anthony Bourdain; Kate Spade; friends, teenagers, neighbors, veterans; my father. Every suicide is distinct and differently devastating, for those who leave and for those who are left.
Yet there are some commonalities, some moments of recognition both in terms of frequent contributing causes and also in terms of what comes next. Here are the hard and important lessons I’ve learned since my father took his life in 2007—when he was 60, and I was pregnant and in graduate school:
1. Suicide is terrifying.
Suicide is what philosophers and mathematicians refer to as a surd—nonsensical, unexpected, a cavernous impossibility that is nonetheless real.
How often do we presume that other people’s lives are on positive trajectories, if not always totally predictable ones?
Perhaps life looked fine, even good, on the outside (as was the case with Bourdain). Or perhaps friends and family members knew the person was struggling but had sought help, and they seemed to be OK (Spade).
After a suicide, many people will say it “doesn’t make sense.” In many cases, yes, there’s a stunned inability to process that the person is gone. But I think there’s a deeper fear at work here, too: the terror of realizing, “Oh my god, if it could happen to them—could this happen to anyone, even people I love, even me?”
It is OK to admit that fear and the cascade of uncertainty it unleashes. Suicide uproots our background assumptions that life makes sense.
2. There are no answers.
There may be generally explicable features in many suicides, but there are no ultimate answers. Hold space for the uncertainty, for the dimensionality of who this person was.
My father was a Navy fighter pilot before he left the military to become a commercial airline pilot. Like many vets, his experiences in Vietnam were traumatizing; he talked about them only rarely, but when he did, the moral and personal agony was palpable. Did he have PTSD? Probably, and society needs to do a better job of destigmatizing veterans and people who have been through trauma. But PTSD isn’t the full story.
The most common response people have when I say that my father killed himself is, “Oh, that’s terrible. Was he depressed?” We don’t know. As a pilot, he resisted seeking psychological diagnoses that would prevent him from flying.
Perhaps he was bipolar, as many family members now think likely. It’s natural to wonder, but we will never know for sure. Posthumous speculation can clarify past patterns. Diagnoses of depression are attractive to people who want explanations. But again: Be careful with the urge to make this “make sense”—because often, that is another way to say, “Oh, this would never happen to me or someone I know.” One of the things that suicide challenges us to do is to recognize that other people’s realities and dimensions far exceed the capacity of our projection.
3. Humility goes a long way.
Check yourself: Avoid explaining what this death means to someone who is grieving a suicide. (This is especially important if you think you have insights or are convinced you are being helpful.) Be present. People in grief need to lean on you, not be lectured by you. And what is true in grief more generally is excruciatingly so when mourning a person who has died by suicide. Frankly, unless we have explicitly said, “What do you think?” it is not at all helpful to hear your speculations or interpretations of what this event means. What we need is the space to grieve and heal in our own complicated realities.
More generally, all of us can work to eliminate unnecessary sayings that are obvious triggers—like “the line at the grocery store was so awful, I just wanted to kill myself!” or making hand gestures that mimic firing a gun into your mouth. It’s been 11 years since my father’s death, and I still cringe at those expressions. Communication evolves with social consciousness, so it’s time to retire those basic expressions.
4. Suicide, I believe, stems from hopelessness—not selfishness.
Some people feel that suicide is a selfish act because it fails to account for the difficulty and devastation wrought on the people who remain. But I agree with the many experts who suggest that suicide is often the result of a total loss of hope and self amid a tsunami of despair.
Suicide may feel selfish to survivors—how could he?—but when someone dies by suicide, they do it not out of selfishness or spite. They do it out of ultimate loneliness and pain so deep that most of us cannot begin to comprehend it because it is on a totally different plane of existence.
5. High-functioning people don’t give many signals. When they do, take those seriously.
My father expressed to a few people that he was thinking of ending his life. Those people, who I know loved him deeply, took him at his word that he would seek help. But I know now that such statements are the high-functioning person’s attempt to seek help—it takes massive effort and will to reach across a divide of loneliness and despair, to entrust someone with such honesty about such heavy burdens. It is another way of saying, “I am alone. I don’t know how to proceed; please help me.”
Take these statements seriously. Accompany the person to get help, right then if possible.
Our society can be very isolating. One antidote that we can give to one another as human beings in moments large and small is in our ability to see one another—to affirm the uniqueness and worth of each individual. We can contribute to bonds and societies that feel secure, safe, trustworthy, and consistent—and perhaps make life a bit less lonely, not just when someone confides in us, but in the caliber and kindness of our everyday interactions.
6. For survivors, some grief is incommunicable.
It is not your job to make your grief legible or to make it conform to other people’s expectations. As a survivor, you will have major triggers that are unrecognizable to most people, and your reactions will vary. I can be totally leveled by the image of my dad’s back in his blue blazer as he strode tiredly away from me at my sister’s graduation, or by how I imagined him leaving the house for the last time, or the first 100-plus times I drove by the fire station outside of which he shot himself. Even the feeling of exhilaration on white water, a delight that he and I shared—these are all particularly potent emotional, geographic, and physical triggers for me, even 11 years later. Most people have no idea.
If you are a survivor, let the emotions surface, and let them pass (not easy: It’s like getting thrashed by a huge wave of rage, sadness, and ugly crying). Let me repeat: You don’t have to hide your emotions, and you don’t have to apologize for them. You don’t even have to explain them. Grief is a shape-shifting, surprising, and (in the case of suicide) often terrifying entity. Lean into people who are trustworthy, nonjudgmental, and who let you be you. And when you meet people who have also experienced the suicide of a loved one or family member, you might find yourself weeping together on top of a mountain during spring ski season (true story). It’s OK.
Presence, care, laughter, and gentleness are salves. I have personally found therapy to be fantastically helpful, and many people benefit from survivor support groups. If you are trying to support someone who is grieving the loss of a friend or family member through suicide, support them with presence and infrastructure. Just hug. Sit. Bring food. Come over to walk the dog together. Call to say you’re thinking of them.
7. Your presence will sometimes make people uncomfortable. Many will react strangely.
People say weird and even hurtful things out of their own profound discomfort after a suicide. Others will disappear entirely from your life. This sucks, but it’s true. Suicide (along with what I call the 3Ds—other forms of sudden death, divorce, and disability) can make people really nervous, and as a result they may react to your presence in all kinds of intense and often unhelpful ways.
One person with whom I was close didn’t call, text, or write me for nearly a year after. Only when I ran into her at a party by chance later did she laugh awkwardly and say, “Yeah, sorry about that. I mean, what could I even have said?” My answer now: “Just call and say you don’t know what to say, and you love me and are thinking of me.”
I have learned that people’s reactions and statements say much more about what they are grappling with than what is true for you. This doesn’t make it easier in the moment, but it does mean you don’t have to take on their stuff. Find your way with the people who let you be you, without foisting their own anxious interpretations onto you.
8. Memorialize in ways that feel right to you.
Just as everyone grieves differently, everyone memorializes differently. In the aftermath of a suicide, ritual and burial are important, though they can take many forms. For some people, traditional religious funeral services may provide important closure. For others, those same services might feel like emotional handcuffs.
As time goes on, trust your creativity and the legacy of the person’s memory. What are the moments that make you think of them with a grin? Consider memorializing a place or an activity that feels like a positive legacy—a meditation bench in a treasured spot or an annual walk with organizations that raise awareness about suicide or mental illness, for example. I have found it meaningful to memorialize my father by consciously giving him a shout out during water sports that we both loved.
Finally: The days around the anniversary of the suicide will be tough. Be gentle with yourself in these times. You also deserve love and kindness.
9. You will change, and your relationships will too.
Suicide is an extreme event that, for survivors, puts much into excruciating texture. For me, my father’s death began a decade-long journey of self-reflection—about myself, my family, my partnership, me as a parent, and society more generally. It has involved devastating anxiety that, with time and therapy and life changes, has given way to profound, gentle, exhilarating clarities. Many relationships, including my marriage, were sundered as a result of this journey.
It has not been easy. Grief doesn’t end, but it does change, and with time it becomes less debilitating, more gently poignant. I wish beyond words that my daughter could have met her grandfather. I also have found ways that my father’s positive legacy lives on in me—and in her.
One aspect of my journey is a radical honesty, forged in agonies that none of us wished on ourselves. I am the person that I am because of many factors. One of them is my father’s suicide.
10. You can be OK.
There are no neat closures to the surd of suicide. But healing can be real. Small or large changes in your life may emerge over time. Sometimes they will surprise you. But I’m here to tell you: There is healing, and believe me—you are not alone. With the life you have, you can narrate the story that you are always unfurling.
David Price is dying, but it’s not the colorectal cancer he was diagnosed with two years ago that is killing him. Doctors removed the tumor shortly after his diagnosis, but Price believes it’s only a matter of time before fate catches up with him.
Rather than let chance decree his date of death, Price, who is a psychologist with an MBA, decided to take the matter into his own hands. About a month ago, he stopped eating and next week, he stops drinking. He expects he will die a week or two thereafter. He faces his death with very little fear and a mental calmness that is peaceful and accepting.
“God has blessed me,” he said. “I have always had a deep faith. I know what’s on the other side.”
Price said he loves the life he has lived, but the current quality of his life was compromised following his cancer surgery. The surgery resulted in having what he calls “a dysfunctional rectum” and as a result, has to use a colostomy bag.
“I will never again have a normal bowel movement,” he said. “I will always wear Depends and I will always need to be close to a bathroom. If I can’t go to the bathroom properly, that’s just not a life.”
While Price said he is “supposedly cancer-free,” he has been told by his doctors he is at a high risk for a recurrence. “Plus, I have multiple health issues that could eventually kill me, including blood clots and hernias. I have epilepsy and I was falling as often as twice a day due to my medications. If I fall and crack my skull and go into a coma, where am I going to be lying for six years? Not at home. I don’t want to be in a nursing home.”
He understands that some people may judge his choice to end his life now, and many people have tried to change his mind. Price also acknowledged that while he believes he is making a rational decision based on his spiritual values and ethics, his choice is unique to him and no one else.
In 2013, the Vermont Legislature passed Act 39, the End-of-Life Choice Law, which allowed Vermont physicians to prescribe medication to a Vermont resident with a terminal condition with the intent that the medication be self-administered for the purpose of hastening the patient’s death. Act 39 set forth conditions for the patient and doctors to be in compliance with the law, including that the patient be capable of making his or her own informed decision. But because he doesn’t have a terminal illness, Act 39 doesn’t pertain to Price.
“I don’t fit the criteria as much as my doctors might like, and they tried their best to convince me otherwise, but all of my medical providers have been supportive of my decision,” said Price, who doesn’t consider what he is doing as suicide. “It’s not extending my death.”
Betsy Walkerman, president of Patient Choices Vermont, which successfully advocated for the passage of Act. 39, said it would be a mistake to conflate Price’s decision with suicide.
“An end-of-life decision is really different from a situation where someone is distressed or has serious depression,” she said. “There are people in the last stages of life who don’t qualify for Act 39 who have stopped eating and drinking. It’s a person’s own choice how to live their life and how to spend their last days and weeks. This is a decision that any person can make and doesn’t require Act 39 and permission from anyone.”
Walkerman said Price’s decision is a demonstration of how people take control of how they die.
“There are so many ways to prolong life as the medical community defines it,” she said. “But whether a person wants that kind of life … it doesn’t sit there in a vacuum. It’s part of the continuum of the evolution of medical care and people’s interest in personal choice.”
Rev. Audrey Walker, of the First Congregational Church in West Brattleboro, said she counseled Price on his decision, and while she advised against it, she understood why he decided the way he did.
“He has reached what I consider to be a very rational decision based on his spiritual beliefs and I support his decision,” she said.
Rev. Shawn Bracebridge, the pastor at Dummerston Congregational Church, met with Price but only as a friend, he said, and he supports Price’s decision as well.
“His decision is his and his alone and it’s grounded in his spirituality,” said Bracebridge.
Medical ethicist weighs in
Arthur L. Caplan, head of medical ethics at the NYU School of Medicine, noted that doctors are required to have a patient assessed if they believe he or she is depressed or otherwise rendered incompetent by a mental health illness.
“If that’s not a concern,” said Caplan, “if Mr. Price is rational, he retains the right to refuse medical treatment. He doesn’t have to accept intervention. In fact, he has a fundamental right to deny an act of intervention.”
Caplan noted that people make this type of decision every day, and by example referred to a Jehovah’s Witness who might refuse a blood transfusion, even knowing it’s a simple life-saving procedure.
“Mr. Price’s doctors might have a good sense that their patient is well aware of what he is doing, that he is coherent and that he is able to comprehend his choices,” said Caplan. “It is the doctor’s duty to try to talk him out of, offer pain control or tailor your care, but that doesn’t mean the patient will be persuaded.”
Caplan also noted that some people with chronic illness who take their own lives are not as deliberate as Price appears to be, who has planned his death in advance after consulting with doctors, his therapist and members of the clergy.
Even when someone has a diagnosed mental illness that is affecting his or her decisions, said Caplan, it can be very difficult to stage an intervention.
“It’s very difficult to force feed someone,” he said. “They could pull the tube out. You would probably have to tie him down. It’s very hard to do with an unwilling person.”
A doctor might refer a patient for a psychological assessment, which could result in a court hearing to decide a person’s fate, but Caplan said courts are often reluctant to get involved in end-of-life decisions.
“Our society leans very hard on honoring individual autonomy,” he said.
Just the same, doctors who are trained to preserve life at all costs do not take it lightly to step aside and let a non-terminal patient die, said Caplan.
“It’s a challenge for them, because they are thinking they can manage epilepsy and they can manage blood clots,” he said. “But they are also trained to respect a patient’s choices.”
“The real issue,” said Caplan, “is not so much is he competent, but does he need spiritual support? Is his quality of life bad because he is depressed or doesn’t have companionship? Does he have friends and a social life?”
If anything that can still be expected from Price’s doctors, said Caplan, is that they stay in contact with their patient and keep checking with him in case he changes his mind and needs medical care.
“I couldn’t have been evaluated more in the past two years,” said Price. “If I was suicidal I wouldn’t be doing this right now.”
Price said his own decision has been informed by his years of practice — especially in the days when there was no treatment for HIV/AIDS — helping people confront their own mortality and helping them “untangle suicide from their sincere desire to end their lives. Most were facing horrible continued pain and suffering.”
‘We don’t know how to live in this world’
Price, originally of Dallas, moved to New England 16 years ago with his then-husband, Michael Lefebvre, to be closer to Lefebvre’s parents, who were ill. They lived in Gardner, Mass., until their divorce in 2008, when Price moved to what he calls his “mountain home” in Westminster West.
“I had all these wonderful plans for retirement,” he said. Instead, said Price, since his surgery he has been diving into his spirituality, studying up on Buddhism and Christianity.
“It’s helped me to realize this is all an illusion,” he said. “All of these material things we grab on to, that we think bring happiness, they don’t bring happiness; they bring us pleasure, momentary pleasure. But they also bring us pain and cost a lot of money. We don’t know how to live in this world. We copy others. I went through all that. I know the lifestyle and it did not lead to happiness.”
Though he has always been a spiritual man, he was not a regular attendee of church. His parents, who still live in Dallas, are Southern Baptists, a denomination with which Price has issues.
“There is a lot of negativity,” he said. “I don’t believe in hate. They don’t call it hate. They think they sit in judgment of the world.”
His parents also did not accept the fact that he is gay. “My family was disappointed in my whole life, not becoming a Baptist and becoming a psychiatrist. To them, mental illness is a sin that can be prayed away.”
The United Church of Christ accepts him as he is, said Price.
“They also accepted me as someone who sees ghosts,” he said. “I didn’t expect to be accepted, but they were like, ‘Yeah, Jesus saw and spoke to spirits.'”
Price firmly believes that all humans have psychic abilities, but not everyone chooses to accept that or practice those abilities and he also believes humans need to be physically close to the earth, touching it with bare flesh as often as possible.
“There is so much energy from nature that we are blocking with our concrete and steel,” he said, which is another reason he wants to die in his mountaintop home and not in a hospital or a nursing home. “I want to be here where I am absorbing the energy.”
‘A very spiritual man’
Price granted his therapist, Supriya Shanti, permission to speak with the Reformer. Shanti has been his therapist since the time Price was diagnosed with cancer.
She said his decision to end his life is not out of character, nor does she believe is it influenced by any mental health issues.
“He is a very spiritual man,” said Shanti. “His decision is a result of his connection to his spirituality, the spirit world and god and his trust and faith in that.”
Shanti noted that Price is a well-respected therapist in his own right and his decision has been informed by his years of offering counseling to his own patients.
“It’s his personal choice,” she said. “Given how he’s been fighting for two years and continues to suffer due to his medical issues, I think it’s his right to choose for himself and I support his choice.”
However, on both a professional and personal level, Shanti said she wrestled with Price’s decision.
“I definitely feel sad on a personal level,” she said. “Professionally, it creates some conflict, because I don’t know if we kept working together, maybe he would make a different decision. But the bottom line is, whoever shows up in my office, it’s my job to support and guide them. I help empower people to make their own decisions.”
Shanti also encouraged people to call and visit Price before he dies, rather than wish they had done so after he is dead.
“David wants company and wants honest conversation,” she said. “Now is the time to visit. It’s really important, especially in the last days of life on this physical plane, to be surrounded by people who love you.”
A necessary discussion
Walkerman said Act 39 and people like Price have ignited a discussion that has been a long time coming.
“He had a discussion with his family, his doctors, clergy,” she said. “A lot of people have trouble even starting these conversations. Any story helps illustrate for people how to have those discussions, rather than suffering alone, thinking they have no choice.”
“It’s important for people who are facing health and emotional crises to take a lesson from this in that you can reach out and get support for your spiritual and emotional needs,” said Susie Webster Toleno, the pastor at the Congregational Church of Westminster West. She said that while she didn’t counsel Price on his decision, they discussed the spiritual aspects of his illness and end of life. “There are people who will answer your phone call, who will listen and provide support,” she said.
Toleno said those people include local clergy members and organizations such as the Brattleboro Area Hospice, at 802-257-0775 (Brattleboro area) 802-460-1142 (Greater Falls area) or brattleborohospice.org.
“Brattleboro Area Hospice has a lot of support for people who are in tough health situations, even if they don’t qualify for hospice,” she said.
Price said if, when he first received his cancer diagnosis, he had the knowledge he has today, he might have chosen not to have surgery to remove the cancer from his body.
“It would have been quick and easy and now here I am, extending my death. But I suspected I wasn’t going to survive. Maybe my family needed time to accept that and maybe I had amends to make. I did a lot of forgiveness work, which is the most important thing.”
If there is one last notion he would like folks to consider challenging it’s the belief that all the world is knowable.
“What we think we know it probably not even one-thousandth of what it out there,” said Price, especially when it comes to spirituality. “Philosophers have been arguing about does God exist for forever. To think that you are smarter than Plato, to me that is intellectual arrogance. Even Einstein said ‘The more I study science, the more I believe in God.'”
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.”