[A]sk people to imagine what they’d say if they knew they were dying and most would have words of sadness, fear, and regret. But new psychological research bolsters what chaplains, hospice workers, and others who spend a lot of time in the company of those approaching the end of life have long known: the process of dying is a complicated one, with room for moments of profundity and light alongside fear and darkness.
In a series of experiments documented in the journal Psychological Science, researchers compared the blog posts of terminally ill people and the last words of death row inmates to the words of healthy people asked to imagine themselves writing near their death.
The people actually approaching death used more positive terms and fewer negative ones to describe their emotions than those imagining the experience. In the blog posts—all from real people who eventually died from their disease—emotions grew more positive as death approached.
It’s not a perfect study—people with unspeakable regrets or fears may be less inclined to publicly chronicle their final days than those who do not. But there are a few reasons why death may be more terrifying as a distant abstract than an immediate reality.
People tend to overlook or discount the psyche’s ability to adapt to new circumstances when imagining the future, according to research from the Harvard University psychologist Daniel Gilbert. Because we don’t properly account for our own resilience when envisioning future calamities, we tend to think that we’ll feel sadder, for longer, than we actually do.
Even amid the trauma of a terminal diagnosis and the discomforts of the dying process, the mind can adapt to find pleasure in the comforts available. And when we believe we have less time to live, whether due to age, illness, or external threat, we subconsciously adjust our priorities to favor those things closest to home. Research has found that old people, young people with serious diagnoses, and people living in uncertain political climates vastly prefer time with old friends and family over new contacts and experiences. The depth of these connections bring meaning to the final days of life in a way that can be hard for healthy people in an externally-focused, future-oriented mindset to comprehend.
It’s inaccurate to portray the close of life as a universally positive or peaceful experience. “We die the way we have lived,” says Barbara Karnes, a hospice nurse who has written extensively on the dying process. “I think it is human nature to look for love, connection, and meaning. We don’t necessarily have to be dying to do that. Dying gives us the opportunity, the gift of time, to reach out, but many do not take that opportunity.”
Death focuses us on what we care about most. But we don’t have to wait until the end is imminent to live as if each day matters.
“If there is any great difference between the people who know they are dying and the rest of us, it’s this: They know they’re running out of time,” Kerry Egan, a Harvard Divinity School-trained hospital chaplain, writes in her book On Living. “They have more motivation to do the things they want to do, and to become the person they want to become…. There’s nothing stopping you from acting with the same urgency the dying feel.”
Legacy therapy helps dying patients tell their stories
Storytelling can help terminally ill patients find closure. Linda Johnson and Brandi Snider share stories at Hinds Hospice in Fresno.
By Sammy Caiola
[M]aureen Cleveland inhaled deeply as she recalled the scent of the fresh tomatoes that her father brought home each summer from the cannery where he worked. The thin 60-year-old woman, who’s battling late-stage breast cancer, talked for an hour in her Carmichael home, smiling almost constantly as she described picnic days with her family of seven and other scenes from her Bay Area childhood.
Visiting hospice chaplain Connie Johnstone listened intently from the foot of the bed, egging Cleveland on with questions and scribbling down the occasional quote.
Johnstone, who works for Kaiser Permanente in Sacramento, has studied the art of conversing with the dying. She calls it life review; others in her field call it legacy therapy or dignity therapy. The point is coaxing out a patient’s most intimate memories and threading them into one last story, often to be recorded for family and friends. For aging baby boomers and others struggling with terminal illnesses, the therapy offers a new way to ease the pain of facing death.
“It’s a real important thing to have a witness to one’s life toward the end,” Johnstone said in her slow, Southwestern drawl. “It’s to have it confirmed to us. If we say it, and we get to look at it again, it gives it substance, space, importance.”
Dignity therapy has gained traction in recent years as hospitals, hospice organizations and palliative care centers look for drug-free ways to pacify patients. It involves multiple 30- to 60-minute question-and-answer sessions, usually conducted by a psychologist, social worker or trained chaplain.
Dr. Nathan Fairman, a UC Davis palliative care psychiatrist who has written about interventions for the dying, said life review stands out from other types of talk therapy because it produces a concrete document that helps the patient reflect and find closure.
“The therapist draws out the parts of their story that have to do with meaning and purpose and relationships so that they can leave the legacy they want,” he said. “You’re looking for the themes that will focus the patient’s attention on the sources of meaning in their life.”
Surrounded by books and photographs in her house, Cleveland spends her remaining days reading, taking in sun from the backyard, watching her young nieces play and telling stories to whoever will listen, she said.
“I’m pretty social, so anyone who walks in here gets stuck talking to me,” Cleveland said during a recent visit. “You need to share what you know, or it’ll disappear.”
Johnstone chooses her questions wisely, often revisiting themes from previous sessions. She remembers little details about her patients’ lives — where they were born, how many children they have, their mothers’ names and occupations. The small talk helps her segue into more difficult topics, such as estranged family members or traumatic experiences.
While it’s usually too late for righting wrongs or seizing missed opportunities, speaking to a stranger can help patients accept the past and feel a sense of calm near the end, Johnstone said.
“Everybody carries some kind of regrets,” she said. “You can’t put the genie back in the bottle. Once you’ve brought something out, it can’t keep recycling in the same way.”
Many patients feel isolated toward the end of life, and are reluctant to lean on loved ones for help, Fairman said. Between 15 and 20 percent of terminally ill patients are diagnosed with major depression, according to the American Psychological Association.
In a clinical trial of 100 terminally ill patients who received dignity therapy, 68 said they felt an increased sense of purpose after the treatment and 47 said it increased their will to live. Eighty-one patients said the intervention was helpful to their families.
“They feel if they share too much with loved ones it will burden them, so they withhold sharing things,” Fairman said. “In a situation like that, it can be really helpful to have someone who is trained in really good listening skills, who can tolerate the suffering people experience when they get close to the end of life.”
Cleveland, who does not have children, hasn’t worked out exactly how she wants to be remembered yet, but with Johnstone’s help she’s piecing it together. During a recent session she brought up a story she hadn’t told in years — one that took place at a school lunch table, some time in the late 1960s.
“There was this family in the neighborhood and they were poor, and they had nothing to eat but ketchup soup,” she said. “I couldn’t believe it. So I shared some of my lunch with them. It was how we were raised. If someone needed something, that was it. You didn’t say no.”
Many years later, Cleveland became a representative for a produce packing company, regularly visiting Central Valley orchards to take inventory and question the farmers about workers’ living conditions.
“They were living in the worst slums you’ve ever seen,” Cleveland said. “I always got in trouble for asking about that, but I kept asking anyway.”
Johnstone kept scribbling. Cleveland explained how her career was interrupted by a Hodgkin’s lymphoma diagnosis in her 20s, and how she spent years as a caregiver for a sick sister, mother and aunt.
During the next session, the pair will paint a cover for Cleveland’s written story. The title word, they’ve decided, is “Survivor.”
“I’m seeing a connection here,” Johnstone said. “I think this is a source of a lot of your resilience.”
Technology has helped spread storytelling as a form of healing. StoryCorps, a nonprofit podcast network, launched its legacy initiative in 2010 to focus on people with serious illnesses. They visit hospitals and clinics throughout the U.S. to train providers on how to capture end-of-life conversations on cell phones. In California, the legacy project partners with Hinds Hospice in Fresno and the Zen Hospice Project at the University of California, San Francisco.
Perri Chinalai, director of community training for StoryCorps, said she believes storytelling helps build a bridge between patients and physicians that can ultimately improve care.
“This is an opportunity for people to talk about themselves outside of their diagnosis,” she said. “It allows for a more holistic understanding of who people are. … It could create a culture of storytelling that enhances the services.”
At Hinds Hospice, storytelling sessions are offered to all visitors, said community outreach liaison Jill McCarthy. Staff can conduct the interview sessions and use the StoryCorps app to archive stories in the Library of Congress’s American Folk Life Center.
Over the years, McCarthy and her staff have heard incredible stories, she said. She remembers an elderly pilot who described one of his first flights over Alaska, as well as an indigenous California man who wanted to record himself speaking in his native Mono language. But mostly, she works with families who just want to get to know a loved one better.
“If the person dies before they get to share their story, those stories go with them,” McCarthy said. “It’s a chance for families to talk about things they’ve never talked about before, to express what they mean to one another. They don’t have to be these grandiose things. It’s the little things that for generations have been handed down.”
Dr. Donald Low, centre, confers in the lab at the Ministry of Health and Long-Term Care about the results of the Legionella outbreak at Seven Oaks Home for the Aged in 2005.
By Maureen Taylor
[T]he night my husband died, I slept beside his corpse in our bed. All night. This wasn’t exactly by choice: the funeral home did not retrieve bodies after 8 p.m., and there was no other bed available for me to sleep in, as all our children were home to help care for their father.
I tell this story whenever I discuss the realities of dying at home. Even as a physician assistant, I did not appreciate the challenges — or the immense rewards — of caring for my husband at home until his death.
According to a 2014 Harris/Decima survey, of those Canadians who express a preference for where they want to die, 75 per cent say they want to die at home, surrounded by loved ones. Interestingly, another Canadian study found that those loved ones aren’t quite as keen on the experience: half of the patients who said they wanted to die at home had family members who hoped the death would take place in an institution, like a palliative care unit. No matter: The majority (about 65 per cent) die in a hospital, which isn’t anybody’s first choice.
The palliative care and hospice community often use this data to advocate for more government funding of community supports, such as personal support workers, to help people die at home. And they’re right that home care and palliative care access is too uneven across Canada and in urgent need of more funding.
But what we don’t understand is how many of these hospitalizations at the end of life could be diverted with more nursing, more personal support workers, more respite for family caregivers. I believe that without better education around what’s involved in dying at home, extra resources won’t be enough.
Dying is messy. It shouldn’t have to be painful anymore, though in some cases, only deep sedation can relieve the worst pain. But pain aside, there is no getting around the progressive weakness, the loss of appetite, the fluctuating level of consciousness, the need for diapers or a catheter, and eventually, the shallow, laboured breathing. None of this has to be distressing for the patient, who can, if needed, be heavily drugged or even sedated. But it can be extremely distressing for family members to witness, and it can go on for days and, in some cases, weeks.
When I worked as a physician assistant in the emergency department, I saw many patients brought in by ambulance in those last stages of their disease. When I spoke to the family members, it was often clear they were overwhelmed by very predictable symptoms. But no one had laid it all out for them before. They weren’t looking for miracles — they accepted that death was inevitable — but they felt unprepared and untrained for the burden of watching their loved one struggle to breathe, to communicate, to just let go. Sometimes a spouse confessed that as the husband or wife’s death neared, they worried they’d always associate the home with the death. And so, they dialed 911.
How can we better support those family caregivers so that they don’t end up in the emergency department? Prepare them. Acknowledge the messiness of death. And obviously, provide palliative care resources.
In our house, I had a frank discussion with all the kids and even our cleaning lady: no matter how bad Don looked, no one was ever to call 911. I knew that if he was taken to hospital, he’d never come home again, and he’d die there. Our palliative care team had a binder that stayed on the kitchen counter, with Don’s Do Not Resuscitate order at the front. We had a nurse we could call if his symptoms weren’t being managed well. Don had opted for terminal sedation at the end: an induced coma, without food or fluids. The palliative care physician visited every few days to make sure the drugs were working, and to give us his best guess as to how much longer Don could go on like that.
I often see frail, elderly spouses who try to provide this care for their dying loved ones at home, and it wasn’t difficult to understand why they struggled. There’s no question that we were luckier than most families: I was relatively young, and we had the resources for me to stay at home and care for Don from the night they diagnosed his brain tumour until his death seven months later. Our children were incredibly strong and present, and we took turns doing even the most personal and intimate tasks for him.
Don had desperately wanted an assisted death, an option unavailable to him at the time. But if he had to die “naturally,” he told us, he’d prefer not to have strangers assisting him. In the end — only after Don was sedated, and with no small amount of guilt, we accepted help from those “strangers” to bathe him and turn him so he wouldn’t get bed sores.
There was so little comfort we could take in the fact of Don’s too-early terminal illness. But knowing that we helped him fulfil at least one of his wishes for his death — that he die at home — was comforting to us. And I thoroughly recommend it to other families if they can manage.
After Don died in my arms, all the kids came up to our bedroom and we surrounded him, breaking out his favourite scotch and sharing stories and memories. The palliative care doctor on call came to pronounce him dead and then I called the funeral home. And learned he’d be spending one more night beside me.
I’ll admit, it was weird. But as I pulled up the covers, I found they were mostly over on his side of the bed, and I smiled and looked over at his sweet face one last time. “Really Don? Hogging the covers, even in death?” And I slept soundly all night.
[F]ear of death is a fundamental part of the human experience–we dread the possibility of pain and suffering and we worry that we’ll face the end alone. Although thinking about dying can cause considerable angst, new research suggests that the actual emotional experiences of the dying are both more positive and less negative than people expect.
“When we imagine our emotions as we approach death, we think mostly of sadness and terror,” says psychological scientist Kurt Gray of the University of North Carolina at Chapel Hill. “But it turns out, dying is less sad and terrifying–and happier–than you think.”
The research, which examined the writings of terminally ill patients and inmates on death row, suggests that we focus disproportionately on the negative emotions caused by dying, without considering the broader context of everyday life.
“Humans are incredibly adaptive – both physically and emotionally–and we go about our daily lives whether we’re dying or not,” Gray explains. “In our imagination, dying is lonely and meaningless, but the final blog posts of terminally ill patients and the last words of death row inmates are filled with love, social connection, and meaning.”
The positive emotions that come with this kind of meaning-making were exquisitely displayed in a recent Modern Love column, written by beloved children’s author Amy Krouse Rosenthal. Rosenthal, who died of ovarian cancer 10 days after her column was published in The New York Times, wrote with profound love and humor about finding someone to marry her husband after she died.
“The column was so touching because it was so positive, so filled with love and hope,” says Gray. “While such positivity seems strange in someone so near death, our work shows that it is actually fairly typical.”
Gray, his graduate student Amelia Goranson, and their co-authors Ryan Ritter, Adam Waytz, and Michael Norton started thinking about the emotional experience of dying when they came across the last words of death-row inmates in Texas, collected by the state’s Department of Justice. They were surprised by how upbeat the statements were, and wondered whether our feelings about death and dying might be clouded by our tendency to zero in on negative experiences.
In their first study, Gray and colleagues analyzed the emotional content of blog posts from terminally ill patients who were dying of either cancer or amyotrophic lateral sclerosis (ALS). To be included in the study, the blogs had to have at least 10 posts over at least 3 months and the author had to have died in the course of writing the blog. For comparison, the researchers asked a group of online participants to imagine that they had been diagnosed with terminal cancer and to write a blog post, keeping in mind that they had only a few months to live.
Using a computer-based algorithm, trained research assistant coders, and online participant coders, the researchers analyzed the actual and imagined blog posts for words that described negative and positive emotions, such as “fear,” “terror,” “anxiety,” “happiness,” and “love.”
The results revealed that blog posts from individuals who were terminally ill included considerably more positive emotion words and fewer negative emotion words than did those written by participants who simply imagined they were dying.
Looking at the patients’ blog posts over time, the researchers also found that their use of positive emotion words actually increased as they neared death, while their use of negative emotion words did not. These patterns held even after Gray and colleagues took the overall word count and number of blog posts into account, suggesting that the increase in positive emotion words was not simply due to the effects of writing over time.
In a second study, the researchers conducted similar analyses comparing the last words of inmates on death row with the poetry of death-row inmates and the imagined last words of another group of online participants.
Again, they found that the words of those who were actually close to death were less negative and more positive in emotional tone than the words of those who were not close to death.
Both the terminally ill patients and the inmates facing execution seemed to focus on things that help us make meaning of life, including religion and family, suggesting that such things may help to quell anxiety about death as it approaches.
Gray and his co-authors acknowledge that the findings may not apply to all people who are approaching death – it’s unclear whether individuals facing a great deal of uncertainty or those who die of old age express similarly positive emotions near the end of life.
Ultimately, the findings suggest that our expectations may not match the reality of dying, which has important implications for how we treat people who are dying.
“Currently, the medical system is geared toward avoiding death–an avoidance that is often motivated by views of death as terrible and tragic,” the researchers write in their paper. “This focus is understandable given cultural narratives of death’s negativity, but our results suggest that death is more positive than people expect: Meeting the grim reaper may not be as grim as it seems.”
[H]ow would you finish this sentence? “The end-of-life care I would want is …”
Would you want all possible measures taken? To be in a hospital or at home? Surrounded by family and friends? Once you’ve decided, now imagine arriving at an emergency room unable to speak or tell anyone what you want. If you haven’t chosen someone to express your wishes — a health care proxy (also known as a health care agent or a power of attorney for health care) — they may never be known.
According to The Conversation Project, co-founded by Pulitzer Prize-winning writer Ellen Goodman in collaboration with the Institute for Healthcare Improvement, half of those 65 and older ending up at the hospital are unable to speak for themselves. The organization has created a starter kit to help us talk about the care we’d want as well as a guide on how to choose a health care proxy.
Why You Need a Proxy
Dr. Javette Orgain has experienced up close what happens when a medical crisis hits and there’s no proxy. Orgain practices medicine at VITAS Healthcare in Chicago and is an associate professor at the University of Illinois-Chicago, department of family medicine.
It’s best for patients and their physicians to understand under what conditions a person wants to be resuscitated, be intubated or receive comfort care only.
“I’ve seen families argue over who should make the decisions and what those decisions should be,” Orgain says, adding that some have even ended up in the courts.
Stepping in with her sisters to fill the proxy role for their mother and aunt, Orgain says that as a doctor many decisions were deferred to her. But when it came time to choose who would make her end-of-life care decisions if she was unable, Orgain chose a lifelong friend. She knew there wouldn’t be the emotional pull her family might have that would shift them away from carrying out her wishes.
Choose the Right Person as a Health Care Proxy
It’s vital to find the person you can trust. Orgain says she’s witnessed what happens when a health care proxy doesn’t honor what was wanted.
“It’s the most harrowing of experiences when the proxy isn’t chosen well,” says Orgain. “In fact, choosing the right proxy is as important as having a proxy.”
When families haven’t had the conversation, they’re often left at the bedside of their ill loved one with many factors pushing on them, says Dr. Jessica Zitter, who practices critical and palliative care at Highland Hospital in Oakland, Calif., and authored the book Extreme Measures: Finding a Better Path to the End of Life.
“There can often be a push to keep people alive on a machine. If the family doesn’t know what would be wanted, we try to support them as substitute or surrogate decision makers, but it’s very stressful and painful for them,” Zitter says.
How to Choose the Best Health Care Proxy
When choosing someone to be your voice, here are a few questions The Conversation Project recommends considering:
Will they be able to make decisions for you, even if their own wishes are different from yours?
Will their emotional connection to you get in the way of making decisions on your behalf?
Will they stand up for you?
Will they be comfortable asking questions of busy doctors and other providers?
Will they ask for clarification if the answer or situation isn’t understood?
Will they be able to make decisions in changing situations?
From Doctor to Patient
Dr. Janet Sollod in San Francisco has seen what can happen in a medical situation from both the physician and patient side. Diagnosed with cancer 10 years ago and now no longer practicing, she found herself able to navigate confusing waters only because of her medical knowledge.
When it came time to name her own health care proxy, she knew what was important.
“I wanted someone who could ask questions and not just say ‘Yes, doctor,’” Sollod says, “or if I’m unconscious, to ask the doctors why they’re doing this test and not that one.” She wanted a proxy with a medical background. But even though her father is a physician, she knew it would be too hard for him. “It’s just too close to home,” she says.
So along with her mother, Sollod chose two close friends: one as an advocate and the other with strong medical knowledge who will ask the right questions. What she wants is for the three of them to make the best decisions together.
(The Conversation Project cautions, however, that it is generally not advisable to name more than one person to be a proxy, because if they disagree on a difficult decision, things could get complicated. You should, however, always name an alternate proxy in case your first choice becomes unavailable.)
Sollod cautions that the proxy doesn’t have to be a family member. “It might be a close friend who knows what you want,” she says. “And don’t feel bad about offending anyone. This is your life and it’s your decision.”
Put It on Paper
Having the conversations is the first step. But you’re not finished with the task of appointing a health care proxy until you put it in writing.
You will make the designation by filling out the health care proxy document. In an advance directive, you outline your wishes for health care should you be unable to speak for yourself.
You may be able to do this with one form, which you can complete without an attorney. You may need witnesses, however. Find your state’s advance directive by going to the National Hospice and Palliative Care Organization’s CaringInfo.
Looking Ahead
Unfortunately, even when people have the conversation, they can still end up on what Zitter calls the end-of-life conveyor belt. Featured in the documentary, Extremis, Zitter is shown talking to a woman with the same genetic disease her father and sister died from. The woman told her brother she wanted to die at home and yet she still ended up in the intensive care unit on a breathing machine.
It’s best for patients and their physicians to understand under what conditions a person wants to be resuscitated, be intubated or receive comfort care only. But we need to get the message out, too, that more treatment is not necessarily better, Zitter says.
There’s also the phenomenon of what she calls “the sister who flew in from the coast.” Leaving your loved one to make the decision when that person is so fragile and emotional usually means that if anyone questions it, they’ll most likely shift to prolonging life, even if that requires using machines that the person didn’t want. In fact, Zitter says, the default family and medical decision is usually to keep the heart beating.
Boomers Leading the Way
We’re making progress in talking more openly about our end-of-life decisions. Goodman is optimistic that boomers will continue to play a part.
“They changed the way we looked at birth and they’ll change the way we look at death and how we die,” she says.
We need to sit at the kitchen table and have these conversations, Goodman says, and then we need to bring it into the medical institutions. Notes Goodman: “It wasn’t a doctor who changed the way we viewed births, it was us. We said this isn’t just a medical experience, it’s a human experience. Dying needs to be seen that way too.”
[I]ntellect was the core of my grandmother’s identity. Rita loved reading biographies, watching dramas, and traveling to new countries. But about ten years ago, her mind began to deteriorate. Now she cannot read, speak or recognize people — the antithesis of her previous intellectual self.
Then she lost the ability to eat. When a piece of food went down the wrong pipe three years ago, her lungs filled with fluid and the pneumonia that followed brought her and the entire family to the hospital. The doctor suggested we consult a palliative care specialist and let her die peacefully. The alternative was to insert a feeding tube.
Rita had recorded her end-of-life wishes. The document reads, “I feel especially strongly about the following forms of treatment … I do not want tube feeding.” But the same document also assigned her health care decisions to my grandfather. And he couldn’t let her go. “She doesn’t know how great the new technology is,” he stressed.
Despite Rita’s explicit wishes, she sits on the couch now, her vacant gaze fixed to the TV screen where Mary Poppins plays on repeat. She doesn’t comprehend that the vivid world in which Julie Andrews sings and dances is one she used to inhabit too.
For some, innovative devices like Rita’s feeding tube are a medical miracle. For others, they prolong a painful and unwanted existence. Even though Rita wanted to die at the natural time, she lost the mental capacity to execute that decision.
When faced with a terminal illness, many mentally competent people recognize the harrowing challenges ahead. These challenges span from loss of autonomy, like my grandmother’s case, to physical deterioration and excruciating pain. To allow these patients more freedom in determining their future, six states have legalized physician-assisted dying.
But even that path has hurdles, as the price of the conventional life-ending medication Seconal has ballooned to upwards of $3,000 under pharmaceutical giants prowling for profit. The steep price has driven doctors, mortally-ill patients and health care experts to wrestle with financial inequality at the final moments of life.
“It’s an example of inequities in our health care system. People have a right to do something but they don’t have a right to get it at a reasonable price,” says Dr. Stuart Youngner, a professor of bioethics and psychiatry at Case Western Reserve University.
Washington state legalized physician-assisted dying in 2008, and the price of Seconal has gradually risen from a few hundred dollars to over $3,000, according to a study published in JAMA Oncology. The highest increase was in 2015, when the Canadian pharmaceutical company Valeant Pharmaceuticals acquired the drug and doubled its price from $1,500 to $3,000.
The increase occurred a month after aid-in-dying legislation was introduced in California, potentially expanding Seconal’s market. Valeant Pharmaceuticals stated that the price was determined by multiple factors including generic alternatives and development costs. (Although the drug has been available since the 1930s.)
This certainly isn’t the first time Valeant has garnered criticism. State and federal agencies have launched multiple investigations into the company’s troubling prices and practices. And Valeant isn’t the only culprit. In December, the Senate investigated high drug prices, and the constant need for pharmaceutical companies to repay investors created a “business model that harms patients, taxpayers and the U.S. health care system,” according to their report.
“What does it mean with yet another instance of pharmaceutical companies seeming to increase the cost of medicines to artificially drive up prices?” asks bioethicist Dr. Robert Arnold, director of the Palliative and Supportive Institute at the University of Pittsburgh Medical Center. “It seems to me that that question isn’t unique to this issue. That question has happened an enormous number of times over the last couple years.”
“As a society,” he continues, “how do we deal with these issues of man-made shortages of medicine?”
A team of doctors in the Northwest grappled with just that question. Doctors at End of Life Washington counsel terminally ill patients and their families about end-of-life options. Some clients couldn’t afford Seconal. Others couldn’t fathom shelling out thousands of dollars to simply die a peaceful death. So seven doctors got together to create a less expensive life-ending medication.
“We all felt responsible for giving patients another option that would be affordable,” says Dr. Therese Law, the medical director of End of Life Choices Washington and a retired physician of 35 years who helped develop the medication.
The team participated in meetings and conference calls over the next few months. They discussed various compounds and dosages that could be used for the lethal mixture. The medication would be prescribed by a physician and obtained at a compounding pharmacy, which dispenses medications whose components and dosages are tailored to the individual patient.
“I think it was a very careful deliberation between pharmacists and prescribing physicians and cardiologists. We talked about various different medications and their effects and their side effects,” Law says.
The doctors had to continuously assess the medication. A few family members reported that the first combination led to a painful burning sensation in the person’s throat. The second version made some deaths take too long. The doctors are currently gathering data to research a third protocol.
“Their intent I do not challenge, nor do I challenge the patient’s desire to have this done. I’m wondering about if their execution of their goals might not be optimal … Is there a better way of approaching the problem?” says Dr. Maurie Markman, the president of Medicine and Science at Cancer Treatment Centers of America.
Part of the problem is that a perfect parallel does not exist. Canada legalized euthanasia last year, in which a doctor uses a lethal injection to hasten a patient’s death. In Europe, drugs called barbiturates are often used, but Americans can’t purchase them, as the European Union applied sanctions to limit barbiturate exports to the United States in opposition to its death penalty.
Should physicians devote their time to helping patients circumvent pharmaceutical greed? This doesn’t seem like the way doctors should spend their time or the way patients should get their healthcare. And Seconal represents a particularly poignant example, since terminally ill patients have often spent an enormous amount of money on medication already.
“In a sense it’s ironic, because a lot of the critics of physician-assisted suicide are worried that poor people will be taken advantage of,” Younger says. “It looks like in this case poor people will be discriminated out of it, not discriminated into it.”
My grandmother is stuck in a manmade medical purgatory, a state she never would have chosen for herself. To some it represents progress, but to me, it’s hard to watch. As society continues to propel medicine forward, we need to allow people choice in how they die. And the right to a dignified death should extend to everyone — regardless of how much money is in their wallet.
It is estimated that 6 percent of American women now hire birth doulas for emotional, physical and even spiritual support during labor and delivery. Twenty years ago, when the birth and postpartum doula movement was in its nascent stage, this percentage was certainly much, much lower.
In fact, 20 years ago, the word “doula” itself evoked quizzical looks. Even 10 years ago, following my initial certification with DONA International, friends, family and colleagues would often inquire: “What’s a doula?” Today, the term has become a part of our common lexicon. Most Americans recognize its meaning: A birth doula is a professional trained in comfort measures, listening techniques and providing compassionate care to women as they labor to give birth.
Today, wise and creative cultural pioneers lead a burgeoning movement in applying key elements of the birth doula model to train people to companion each other in death. Given that our experience of death has become so institutionalized and medicalized, applying the doula model of care to death and dying represents a sane and needed grounding in the wisdom of compassion, companioning and proven comfort measures.
As someone who holds space for both birth and death, I’m hopeful that Fersko-Weiss is right. My specialty is in working with bereaved parents who know the pain of miscarriage, stillbirth and/or infant death. I’ve witnessed firsthand that there is much wisdom to be gained by applying the doula approach of caregiving to the concluding threshold points of our earthly existence. Certified hospice and palliative nurse and end-of-life doula Deanna Cochran agrees. Cochran has been mentoring and training death doulas since 2010. She remembers her initial pull to death doula work after working for several years in acute care and oncology. She remembers how it became “overwhelmingly clear” that “so much needless suffering was going on, and I wanted to be a part of changing that.”
When our loved ones are dying, we certainly work diligently to end needless suffering. But much of human suffering is emotional and psychological. Physical pain can be alleviated through medicine, but what of the pain of grief? Just as more and more American women have turned to birth doulas to help buoy their courage and strength as they traverse the landscape of labor and delivery, more and more Americans – should they know death doulas exist – will turn to death doulas to companion them through the wilderness of loss.
So, what to look for when hiring a death doula? Consider these three simple points.
Seek out someone who has experience and training. Seek out a certified death doula, if possible. A growing number of organizations offer quality end-of-life doula training. Inquire if a certified and/or trained doula works in your vicinity. If possible, interview more than one potential candidate to ascertain which doula will be the best match for your situation. Inquire about their training, past experience, philosophy in holding vigil and what specific comfort measures they can bring to both the dying and the bereaved.
Seek online and/or phone support as needed. Trained death doulas may not live in your area, but in the age of Skype and FaceTime, one can still benefit from a virtual companion. While there is much to be said for face-to-face interaction and the healing power of comforting touch, it is better to have quality support than to go without care. If you are the primary caregiver for a dying relative or friend, reaching out to expand your own support network is especially a very good idea.
Read and research about the doula approach to caring for the dying. It’s certainly possible to bring key aspects of doula caregiving into one’s personal experience with family and friends. Knowledge and insight gained can help you strengthen your confidence and expand your skill set as you offer your presence in vigil for the dying.
Each month, I receive emails from individuals interested in finding an end-of-life doula. “Can you help me find a death doula? My grandfather is dying.” Or “My mother is nearing death and I’m alone in caring for her, can you recommend an end-of-life doula who can support us?” Such requests carry the weight of a great deal of sadness. It’s helpful to remember that we don’t have to walk through the valley of bereavement alone. Whether our grieving is extremely complicated or pretty straightforward, it is real. It hurts. And death doulas are here to offer up their compassion and skill. They hold us as we hold our sorrow.
