The broadcaster and Silver Line founder Esther Rantzen has said she has considered the option of assisted dying if her ongoing lung cancer treatment does not improve her condition, adding that she had joined the Swiss organisation Dignitas, which offers physician-assisted suicide. Here we take a look at the policies of other countries.
Canada
Doctors are permitted to prescribe drugs for self-administration and they have been able to administer them since 2021 to those who ask to die and have a grievous and irremediable medical condition. A ban on assisted dying was liberalised after a 2015 supreme court ruling that prohibiting a physician’s assistance in terminating life infringed on the constitutional right to life, liberty and the security of the person who required such help.
Netherlands
The Termination of Life on Request and Assisted Suicide Act 2001 permits doctors to prescribe drugs for self-administration and to administer where it can be shown that the individual concerned is experiencing unbearable suffering and is making an informed choice to die. The individual involved must be at least 12 years old and parental consent is required for those aged 12-16. Switzerland
The Swiss Criminal Code of 1942 permitted adults to assist in another’s suicide as long as the motive for doing so was not “selfish”. Doctors are permitted to prescribe drugs for self-administration and to administer. Organisations providing assisted suicide have been providing services under certain regulations since 1985. Assisted suicide is lawful irrespective of the condition of the person who requests it.
Germany
Lawmakers are struggling to agree on new legislation after a 2020 federal constitutional court ruling that a ban on assisted suicide violated the rights of citizens to determine the circumstances of their death by restricting their ability to seek assistance from a third party.
US
Medically assisted dying for adults is legal in 11 of the 50 states. In Washington DC, the Death With Dignity Act 2016 permits doctors to prescribe drugs for self-administration. Legislation was passed this year to allow more types of healthcare providers in the district to sign off on requests for a medically assisted death, and allow the drugs to be mailed to patients instead of collected in person.
Australia
The charity Dying with Dignity NSW has planted more than 3,000 hearts, each bearing a message from someone who supports voluntary assisted dying laws, behind the lawns at Parliament House in Sydney, Australia.
In Victoria, Western Australia, Tasmania, South Australia, Queensland, and New South Wales, doctors are able to prescribe drugs to adults for self-administration and, in cases where an individual is physically unable to self-administer, to administer the drugs. Assisted dying remains illegal in the Northern Territory and the Australian Capital Territory (ACT). A bill to legalise voluntary assisted dying in the ACT was introduced to the legislative assembly in October.
Belgium
For the past 20 years under Belgian law, patients have qualified for medically assisted dying if they have an incurable illness and experience constant and intolerable suffering that cannot be alleviated. Unlike in many other countries with liberal legal systems, euthanasia for people who are not terminally ill, such as those with psychiatric disorders or dementia, is also legal. Since 2014 there have been no age restrictions; parental consent is required for under-18s.
France
This year, President Emmanuel Macron instructed the government to look at whether euthanasia or assisted dying should be permitted in France. The law, in effect since 2016, allows medical personnel to place someone close to death and in intolerable pain under permanent sedation but stops short of authorising them to administer or supply a lethal substance.
Japan
According to Japan’s penal code, solicitation of suicide (the act of intentionally killing oneself), assistance in suicide, commissioned murder and consensual homicide are illegal. No laws or official guidelines govern voluntary assisted dying.
No one can predict exactly how long you will live with cancer, whether you have metastatic stage 4 disease (cancer that has spread to distant organs) or a less advanced stage. No matter where you are in your cancer treatment, end-of-life planning can ease some of the burden on you and your loved ones. If you take time now to reflect on your wishes, you can increase the chances you’ll achieve the outcomes you want.
Soon after any cancer diagnosis is a good time to consider end-of-life planning. Your doctor can answer questions about your prognosis, including what the realistic options are and what those treatments can achieve, says Steven Pantilat, MD, the chief of the division of palliative medicine at the University of California in San Francisco.
Laura Shoemaker, DO, the chair of palliative and supportive care at Cleveland Clinic, adds, “Care planning, ideally, is about planning for the entire trajectory of the illness, including but not limited to end of life.”
This can be done at any time and should be tailored to your needs.
Reflect on Your Values, Priorities, and Wishes
This reflection process can be difficult to initiate, but will be well worth it. It should include talking with your family, caretakers, or even a counselor.
“Each person’s plan will be a reflection of their lives, values, and personal priorities,” says Kate Mahan, LCSW, an oncology social work counselor in the Canopy Cancer Survivorship Center at Memorial Hermann the Woodlands Medical Center in Houston.
“It is often helpful to think of this as a series of discussions instead of a single talk,” she adds. “While we all know that no one lives forever, it is often very challenging to consider our own mortality.”
End-of-life planning allows your healthcare team to understand what matters most to you, says Mohana Karlekar, MD, the section chief of palliative care at Vanderbilt University Medical Center in Nashville, Tennessee.
It’s important to think about expressing your end-of-life wishes in writing if your cancer has progressed, or you’re experiencing more complications from your treatments.
This may be the time to ask yourself where you would prefer to spend your final days — for instance, at home or in a hospice house, says Eric Redard, a chaplain and the director of supportive care at High Pointe House, part of the Tufts Medicine Care at Home network, in Haverhill, Massachusetts.
Do you want to accomplish anything special? Is there a meaningful place for you to visit while you’re still mobile? “The list is endless,” says Redard.
Appoint a Decision-Maker
By communicating openly with your healthcare team, you can make more informed choices about the medical care you want if the time comes when doctors and family members have to make decisions on your behalf.
One of the most important end-of-life decisions for any person with a cancer diagnosis involves selecting someone who will be a voice for you when you can’t speak for yourself.
“Ask yourself, who would I want to make decisions for me? Anyone with cancer could — and should — do that,” says Dr. Pantilat.
Your choice can be enforced through a durable power of attorney for healthcare. It’s a type of advance directive, sometimes called a “living will.” This document names your healthcare proxy, the person who will make health-related decisions for you if you can’t communicate them to your providers.
Write Advance Directives
Outline your wishes in advance directives. The following are decisions you may want to consider including in these documents, says Redard.
Tube feeding Nutrients and fluids are provided through an IV or via a tube in the stomach. You can choose if, when, and for how long you would like to be nourished this way.
Pain management It’s helpful for advance directives to include how you want the healthcare team to manage your pain. You can request as much pain-numbing medicine as possible, even if it makes you fall asleep, or just enough to reduce pain while allowing you to remain aware of the people around you.
Resuscitation and intubation You may decide that a do-not-resuscitate (DNR) order is right for you. This is a medical order written by a doctor that informs healthcare providers not to perform cardiopulmonary resuscitation (CPR) if your heart stops beating. Similarly, a do-not-intubate (DNI) order tells the healthcare team that you don’t want to be put on a ventilator if your breathing stops.
Organ and tissue donations You may want to specify that you want to donate your organs, tissues, or both for transplantation. You may be kept on life-sustaining treatment temporarily while they’re removed for donation. To avoid any confusion, consider stating in your advance directive that you are aware of the need for this temporary intervention.
Visitors You may wish to make it known in advance who will be able to see you and when. This may include a visit from a religious leader. For some people, such a visit can provide a sense of peace.
Even if you write advance directives, it’s a good idea to discuss them with everyone involved in your care. “There is no substitute for meaningful conversations with loved ones and medical providers about one’s care goals and preferences,” says Dr. Shoemaker.
The advance directives can also specify if you would like to receive palliative care.
Choose Palliative Care
“Palliative care provides symptom control and supportive care along the entire disease continuum, from diagnosis of advanced cancer until the end of life,” says David Hui, MD, the director of supportive and palliative care research at MD Anderson Cancer Center in Houston.
It treats a range of symptoms and stress issues such as pain, fatigue, anxiety, depression, nausea, loss of appetite, and nutrition.
“We generally advise that patients with advanced cancer gain access to specialist palliative care in a timely manner to help them with their symptom management, quality of life, and decision-making early in the illness trajectory,” says Dr. Hui.
The goal of this approach is to provide an extra layer of support not only for the patient but for loved ones as well, especially family caregivers, according to the Center to Advance Palliative Care. It is appropriate at any age and at any stage of a serious illness, and you can receive it along with curative treatment.
Consider Hospice Care
Hospice care is one branch of palliative care. It delivers medical care for people who are expected to live for six months or less, according to the Hospice Foundation of America.
You may decide to consider hospice when there is a major decline in your physical or mental status, or both, despite medical treatment. Symptoms may include increased pain, significant weight loss, extreme fatigue, shortness of breath, or weakness.
Hospice can help you live with greater comfort if you decide to stop aggressive treatments that may have weakened you physically without curing your cancer or preventing it from spreading. Hospice care does not provide curative therapies or medical intervention that is intended to extend life.
A hospice care team often includes professionals from different disciplines, such as a doctor, nurse, social worker, chaplain, and home health aide. This team can guide you in managing your physical, psychosocial, and spiritual needs. They also support family members and other close unpaid caregivers.
Find Comfort at the End of Life
Finally, remember that end-of-life planning isn’t solely about medical care. It’s also a time when you will need emotional support. So, consider mending broken relationships, surrounding yourself with pictures of family and friends, and playing music that soothes your soul.
“People can write letters to loved ones, forgiving them or reconciling,” Redard says.
End-of-life planning is a topic people tend to shy away from, but it removes the burden from those left behind. “Once it’s over,” says Redard, “there’s relief.”
Just because death is inevitable doesn’t make it easy or natural to talk about. In a new study, researchers wondered if hospice workers—experts in end-of-life care—had lessons to teach the rest of us when it came to speaking with patients and families about death.
Daniel Menchik, an associate professor of sociology at the University of Arizona who studies the use of language in different fields of medicine, spent eight months sitting in on team meetings at a hospice care facility that were also open to patients’ families. His goal was to study how both groups talked to each other about the impending death of the patient. His findings, which will be published in the journal Social Science & Medicine, reinforce the importance of framing death as a process rather than an outcome when caring for frightened patients and loved ones. It’s a helpful strategy that he says everyone could use when facing loss.
“People aren’t dead until they’re dead,” Menchik says. “And even then, they may not be experienced that way by the people that they are connected to, especially if they’ve had quality time with that person.”
In the study, Menchik noticed that hospice workers used three different types of verbs in meetings with family members: predictive, subjunctive, and imperative. Predictive verbs are used to assert things about the future and include words like “will” and “going to.” Imperative verbs carry a similar firmness, but include a call to action; the most common one Menchik encounters in medical settings is “should.” Subjunctive verbs convey some sort of personal stance when talking about the future. “Think,” “feel,” “want,” and many other expressive phrases fall in this category.
When a family starts hospice care, “their capabilities to engage in intense conversations [about death] are usually pretty limited,” Menchik says. But he believes that hospice workers help bridge that gap by minimizing their use of imperative verbs. In meetings he observed, imperative verbs made up just 17% of the verb phrases used by hospice professionals. That’s fairly uncommon in medicine. Menchik has also researched how surgeons speak—a field where questions about courses of treatment and illness progression demand quick and conclusive answers—and found that they use imperative verbs much more often, likely as a way of projecting that they have control over outcomes.
A higher priority in hospice is emotional management. “With the language that they’re using, they’re there as guides, not as the authorities,” says Dr. Maya Giaquinta, a pediatric resident at the Medical College of Wisconsin who worked with Menchik on the paper (and emphasized that she’s speaking in her own capacity, and not on behalf of the school). Using more predictive and subjunctive verbs allows hospice experts to orient care around current emotional needs, rather than future events.
While predictive verbs were used the most often in the meetings Menchik and Giaquinta observed, at least half of the verbs most frequently used were words that conveyed uncertainty, like “could,” “might,” and “may.” In declining to talk about future events as set in stone, the researchers found, professionals were better able to redirect conversations to the current moment and focus on anxieties and emotions.
Hospice professionals aren’t taught about care at a grammatical level in training, at least not explicitly, says Dr. Robert Gramling, a physician and the chair of palliative medicine at the University of Vermont, who was not involved with the study. Research that describes and identifies the skills experts pick up over time can be valuable for expanding the general public’s ability to think and talk about death, he says.
Gramling has studied end-of-life conversations, which he says require “thinking granularly about the words we use and how they land with other people.” When speaking to a family or a patient facing death, ask yourself: “Am I referring to this person as dying? Or am I referring to this person as living?” Gramling suggests. Such reflection grounds the conversation firmly in the present. Another question to consider about your wording: “Is that framed in the language of the person who’s experiencing it, or is it really my perspective of things?” In hospice, where patients face only one outcome, speaking with empathy and compassion along the path to it is one thing within people’s control.
When I tell my “how I got here” story, the usual responses are sad looks and a weird sigh that most seem to think fits responding to loss. You know that experience, especially if your partner has died. It’s one the grievers I work with learn to loathe.
It’s confusing when you smile in response. You are supposed to be sad, perhaps a bit hopeless, and, very possibly, needy. You have a role to play. And while we may be sad at times, we need to smile and feel capable just like everyone else.
Like the cemetery scene in the movie ‘Steel Magnolias,’ research shows that families experiencing terminal illness need humor in those around them.
You can insist that you are treated as a couple, not a caregiver and patient.
After the losses I’ve experienced on the ‘bingo card’ of life, my take on how to do illness, dying and grief is a bit different.
Working in hospice as a social worker and administrator added to that shift, and quite possibly to my sense of humor in talking about it. Hospice staff have a bit of a twisted sense of humor simply to survive, but we don’t take it out to share in public. We should. Research shows that families experiencing terminal illness need humor in those around them. Remember the cemetery scene in the movie “Steel Magnolias?”
A Need to Take Control
They also need a sense of control. Dying is not like the movies; it takes work, but there can be some magic in the end. It needs to be actively managed, not something that takes control of your life: the couple should make the decisions, with education, great hospice care and setting boundaries to preserve their roles.
You can insist that you are treated as a couple, not a caregiver and patient. You should be allowed to use your anticipatory grief together to finish your relationship, and to say goodbye in a way that works for you.
Terminal illness can be sneaky. You cope with the disease process and adapt, over and over. And suddenly that ongoing disease is now going to be terminal.
My first wife, Linda, survived metastatic breast cancer — but died of pulmonary fibrosis a decade later from chemo. My second wife, Casper, (yes, she was named after a friendly ghost) died of Lewy Body Dementia. Think Robin Williams, but not the funny part. That started with a weird assortment of symptoms that were repeatedly misdiagnosed. Her final diagnosis was months before she died, and only after I asked if that was what we were dealing with.
It was managing their illnesses and symptoms that allowed control over some of the craziness that is today’s medical system. (That, and being an outspoken wife who is also a social worker, much to their dismay at times.) I am not alone in that experience.
Steps to Take to Manage a Loved One’s Illness
So how do we manage facing ongoing illnesses that have the potential for becoming life shortening?
Document! I know, it takes time, and it feels unending. It’s hard to look at the words. Do it anyway. What are the symptoms throughout the day? What level is the pain? What works? What doesn’t? Who have you talked to? What have you been told? Take a medical notebook with you to every appointment.
Write a summary for doctor’s visits. Use bullet points for easy reading. Write down what you need from the visit. Expect care that meets your needs and follow-up.
Find an online community of caregivers/patients. They get it, where others will not. And they share survival humor.
Get your advanced directives done. Get paperwork in order: A POLST (Physician’s Order Regarding Life Sustaining Treatment), trust or will, caregiving plan, end of life plan, memorial plans. Consider hiring a private end of life doula. There are some great books out now (“I’m Dead, Now What?” is popular). The National Funeral Directors Association has some helpful resources about having hard conversations. Unfinished plans and paperwork make things harder, and take away your control when others step in to do them for you.
What happens when the illness gets worse? It would be nice if doctors would tell us that our loved one is now considered terminally ill, but the reality is many will not. Many physicians do not tell families or patients when an illness is no longer treatable. Some will mention palliative care to open the conversation, but won’t say hospice.
The National Hospice and Palliative Care Organization offers information about hospice care; hospice can extend life because a good care team reduces stress, and the support provided allows the patient and family to use their energy on quality of life, not battling insurance companies, pharmacies and unrealistic expectations of one another.
Readers blamed the predominantly for-profit nature of American medicine and the long-term care industry for systematically depleting the financial resources of older people.
Thousands of people shared their experiences and related to the financial drain on families portrayed in the Dying Broke series.
Thousands of readers reacted to the articles in the Dying Broke series about the financial burden of long-term care in the United States. They offered their assessments for the government and market failures that have drained the lifetime savings of so many American families. And some offered possible solutions.
In more than 4,200 comments, readers of all ages shared their struggles in caring for spouses, older parents and grandparents. They expressed their own anxieties about getting older and needing help to stay at home or in institutions like nursing homes or assisted-living facilities.
Many suggested changes to U.S. policy, like expanding the government’s payments for care and allowing more immigrants to stay in the country to help meet the demand for workers. Some even said they would rather end their lives than become a financial burden to their children.
Many readers blamed the predominantly for-profit nature of American medicine and the long-term care industry for depleting the financial resources of older people, leaving the federal-state Medicaid programs to take care of them once they were destitute.
“It is incorrect to say the money isn’t there to pay for elder care,” Jim Castrone, 72, a retired financial controller from Placitas, N.M., commented. “It’s there, in the form of profits that accrue to the owners of these facilities.”
“It is a system of wealth transference from the middle class and the poor to the owners of for-profit medical care, including hospitals and the long-term care facilities outlined in this article, underwritten by the government,” he added.
But other readers pointed to insurance policies that, despite limitations, had helped them pay for services. And some relayed their concerns that Americans were not saving enough and were unprepared to take care of themselves as they aged.
“It was a long, lonely job, a sad job, an uphill climb.”
Marsha Moyer
What other nations provide
Other countries’ treatment of their older citizens was repeatedly mentioned. Readers contrasted the care they observed older people receiving in foreign countries with the treatment in the United States, which spends less on long-term care as a portion of its gross domestic product than do most wealthy nations.
Marsha Moyer, 75, a retired teaching assistant from Memphis, said she spent 12 years as a caregiver for her parents in San Diego County and another six for her husband. While they had advantages many don’t, Ms. Moyer said, “it was a long, lonely job, a sad job, an uphill climb.”
In contrast, her sister-in-law’s mother lived to 103 in a “fully funded, lovely elder care home” in Denmark during her last five years. “My sister-in-law didn’t have to choose between her own life, her career and helping her healthy but very old mother,” Ms. Moyer said. “She could have both. I had to choose.”
Birgit Rosenberg, 58, a software developer from Southampton, Pa., said her mother had end-stage dementia and had been in a nursing home in Germany for more than two years. “The cost for her absolutely excellent care in a cheerful, clean facility is her pittance of Social Security, about $180 a month,” she said. “A friend recently had to put her mother into a nursing home here in the U.S. Twice, when visiting, she has found her mother on the floor in her room, where she had been for who knows how long.”
Birgit Rosenberg, 58, of Southampton, Pa.
Brad and Carol Burns moved from Fort Worth, Texas, in 2019 to Chapala, Jalisco, in Mexico, dumping their $650 a month long-term care policy because care is so much more affordable south of the border. Mr. Burns, 63, a retired pharmaceutical researcher, said his mother lived just a few miles away in a memory care facility that costs $2,050 a month, which she can afford with her Social Security payments and an annuity. She is receiving “amazing” care, he said.
“As a reminder, most people in Mexico cannot afford the care we find affordable and that makes me sad,” he said. “But their care for us is amazing, all health care, here, actually. At her home, my mom, they address her as Mom or Barbarita, little Barbara.”
Insurance policies debated
Many, many readers said they could relate to problems with long-term care insurance policies, and their soaring costs. Some who hold such policies said they provided comfort for a possible worst-case scenario while others castigated insurers for making it difficult to access benefits.
“They really make you work for the money, and you’d better have someone available who can call them and work on the endless and ever-changing paperwork,” said Janet Blanding, 62, a technical writer from Fancy Gap, Va.
Derek Sippel, 47, a registered nurse from Naples, Fla., cited the $11,000 monthly cost of his mother’s nursing home care for dementia as the reason he bought a policy. He said he pays about $195 a month with a lifetime benefit of $350,000. “I may never need to use the benefit(s), but it makes me feel better knowing that I have it if I need it,” he wrote. He said he could not make that kind of money by investing on his own.
“It’s the risk you take with any kind of insurance,” he said. “I don’t want to be a burden on anyone.”
Pleas for more immigrant workers
One solution that readers proposed was to increase the number of immigrants allowed into the country to help address the chronic shortage of long-term care workers. Larry Cretan, 73, a retired bank executive from Woodside, Calif., said that over time, his parents had six caretakers who were immigrants. “There is no magic bullet,” he said, “but one obvious step — hello people — we need more immigrants! Who do you think does most of this work?”
Victoria Raab, 67, a retired copy editor from New York, said that many older Americans must use paid help because their grown children live far away. Her parents and some of their peers rely on immigrants from the Philippines and Eritrea, she said, “working loosely within the margins of labor regulations.”
“These exemplary populations should be able to fill caretaker roles transparently in exchange for citizenship because they are an obvious and invaluable asset to a difficult profession that lacks American workers of their skill and positive cultural attitudes toward the elderly,” Ms. Raab said.
“For too many, the answer is, ‘How can we hide assets and make the government pay?’”
Mark Dennen
Federal fixes sought
Others called for the federal government to create a comprehensive national long-term care system, as some other countries have. In the United States, federal and state programs that finance long-term care are mainly available only to the very poor. For middle-class families, sustained subsidies for home care, for example, are fairly nonexistent.
“I am a geriatric nurse practitioner in New York and have seen this story time and time again,” Sarah Romanelli, 31, said. “My patients are shocked when we review the options and its costs. Medicaid can’t be the only option to pay for long-term care. Congress needs to act to establish a better system for middle-class Americans to finance long-term care,” she said.
John Reeder, 76, a retired federal economist from Arlington, Va., called for a federal single-payer system “from birth to senior care in which we all pay and profit-making removed.”
John Reeder, 76, at home in Arlington, Va.
Mark Dennen, 69, from West Harwich, Mass., said people should save more rather than expect taxpayers to bail them out. “For too many, the answer is, ‘How can we hide assets and make the government pay?’ That is just another way of saying, ‘How can I make somebody else pay my bills?’” he said, adding: “We don’t need the latest phone/car/clothes, but we will need long-term care. Choices.”
<h2″>Questioning life-prolonging procedures
A number of readers condemned the country’s medical culture for pushing expensive surgeries and other procedures that do little to improve the quality of people’s few remaining years.
Dr. Thomas Thuene, 60, a consultant in Roslindale, Mass., described how a friend’s mother who had heart failure was repeatedly sent from the elder care facility where she lived to the hospital and back, via ambulance. “There was no arguing with the care facility,” he said. “However, the moment all her money was gone, the facility gently nudged my friend to think of end-of-life care for his mother. It seems the financial ruin is baked into the system.”
Joan Chambers, 69, an architectural draftsperson from Southold, N.Y., said that during a hospitalization on a cardiac unit she observed many fellow patients “bedridden with empty eyes,” awaiting implants of stents and pacemakers.
“I don’t want to be a burden on anyone.”
Derek Sippel
“I realized then and there that we are not patients, we are commodities,” she said. “Most of us will die from heart failure. It will take courage for a family member to refuse a ‘simple’ procedure that will keep a loved one’s heart beating for a few more years but we have to stop this cruelty.
“We have to remember that even though we are grateful to our health care professionals, they are not our friends, they are our employees and we can say no.”
One physician, Dr. James D. Sullivan, 64, from Cataumet, Mass., said he planned to refuse hospitalization and other extraordinary measures if he suffered from dementia. “We spend billions of dollars, and a lot of heartache, treating demented people for pneumonia, urinary tract infections, cancers, things that are going to kill them sooner or later, for no meaningful benefit,” Dr. Sullivan said. “I would not want my son to spend his good years, and money, helping to maintain me alive if I don’t even know what’s going on,” he said.
Thoughts on assisted dying
Others went further, declaring they would rather arrange for their own deaths rather than suffer in greatly diminished capacity. “My long-term care plan is simple,” said Karen D. Clodfelter, 65, a library assistant from St. Louis. “When the money runs out I will take myself out of the picture.” Ms. Clodfelter said she helped care for her mother until her death at 101. “I’ve seen extreme old age,” she said, “and I’m not interested in going there.”
Some suggested that assisted dying should be a more widely available option in a country that takes such poor care of its elderly. Meridee Wendell, 76, from Sunnyvale, Calif., said: “If we can’t manage to provide assisted living to our fellow Americans, could we at least offer assisted dying? At least some of us would see it as a desirable solution.”
We’re all going to die. While we don’t know when or how, the sun will set on each of our lives.
American culture struggles with this, in turn making the inevitable insufferable. This is where end-of-life doulas are breaking new ground.
Cheryl Adcox has been working as an end-of-life doula in Central Oregon since 2018. That’s when the registered nurse opened Hand-in-Hand End of Life Doula Services. For her, death is “sacred and it’s magical and it’s part of the mystery of life.”
It’s a view that few people understand. It’s one these death doulas understand intimately.
“Part of this is about normalizing conversations around death, dying, loss, grief,” Elizabeth Johnson, the Executive Director of the non-profit Peaceful Presence, said.
Johnson opened Peaceful Presence, which offers end-of-life doula care, in 2019. It was founded just before COVID-19 shut down the world, but thrived as the world began to see death more regularly through the pandemic.
What are end-0f-life doulas?
End-of-life doulas are caregivers who help people find peace with the circle of life. Most often, they work with people who are dying, along with their families. But they also help healthy people come to terms with life’s inevitable end.
Erin Walker is one of those people who was deeply impacted by death during the pandemic. Before this, she hadn’t had any real life-changing relationship with death.
“I hadn’t had anybody close to me die,” Walker explained.
When her husband, Hans, became gravely ill in 2021, shortly after the two welcomed their first daughter, Harper, she had to handle death head-on.
“He didn’t care about what people thought, in the best way,” Walker said, describing her husband.
Erin Walker
Hans was diagnosed with stage-four liver cancer in the middle of a pandemic. An already challenging time was made nearly unbearable.
The two decided an end-of-life doula could help them navigate this foreign path. The decided to work with Peaceful Presence.
“An end-of-life doula is a non-medical companion to someone,” Johnson explained. “We do a lot of legacy work, life review work.
Doulas treat the family, not just the patient
For Johnson, the goal of a doula is to help families like Walker’s deal with death and all the logistics that come with dying. They treat the whole family unit, not just the patient, in a way that compliments medical care received in the hospital and hospice.
Walker said Hans was afraid of being alone as he got closer to death. Walker had to balance both being a wife and mom. Sometimes she couldn’t do it all, having to leave her husband in the hospital or hospice to take care of their daughter.
With Peaceful Presence, Hans didn’t have to be alone during these moments. As Walker explained, the doulas were “there to just be there, to just be that person in the room for when and if Hans woke up, to be present with him.”
Walker also got essential support.
“They’re there to hold your hand. They’re there to hug you when you’re crying. They’re there to get you tea,” Walker explained. “It was having people to call — not the friend, not the sister, not the people with baggage or their own relationships with Hans.”
In September of last year, Hans died. Memories of him sit on shelves and side tables throughout their Sisters home. His urn is below a pair of paintings the couple did together. His death still isn’t easy to talk about, but through the experience, she found a greater understanding of life.
“It can be a traumatic experience to have someone die, or it can be something that you can talk about and that you can share with others and that you can connect with them on,” Walker said.
That connection is catching on in Central Oregon.
“We actually have a lot of hospice and palliative care professionals who come and say, ‘I was in medical school. I learned a lot, but I didn’t learn, you know, some of these ways of just being with somebody during this end-of-life window,’” Johnson explained.
Adcox has found, since starting Hand-in-Hand back in 2018, that people are more willing to have these death conversations.
“People are much more receptive to it now than when I first started,” Adcox explained.
Cheryl Adcox
Death Cafés come to Central Oregon
In 2018, in addition to starting the doula service, she began hosting Death Cafés. The practice, which originated in Europe, offers free, public meet-ups just to dish about death.
“We have people in their late seventies, early eighties. We have people in their early twenties,” Adcox said of the cafes. “It’s so beautiful that we can all sit in a circle and share this one commonality that we all have as human beings.”
The meet-ups happen about once a month, except during the summer when they are paused. They’re also now sponsored by Deschutes Public Library. Plus, with their popularity, Adcox has expanded the cafes beyond Bend to Redmond. The next Death Café is on January 30. Adcox says this work is a part of a growing “death-positive movement.”
It’s a mission Peaceful Presence is also on. One way they help people of all ages and health do this is through their guidebook End Notes.
“What are all the life logistical things I might wanna have in place if I were to die tomorrow? What do people need to know about my life, right?” Johnson said, explaining End Notes. “Are there letters that you want to write? Are there things you want to communicate? Are there places where you need to ask forgiveness?”
Johnson also notes that the work is expanding across Oregon. Thanks to funding from three different foundations, Peaceful Presence is going to rural Oregon communities, not necessarily to establish more end-of-life doulas there but to embed the doula training into existing professions, helping people better handle death.
Elizabeth Johnson
By May, Johnson says they’ll have trained 60 people in rural Oregon communities.
The death doulas, cafes and guidebooks — all changing the conversation around death in Central Oregon. Helping people, like Walker, change their perspective on dying.
“Do you feel like having worked with a doula that your perspective on death has changed?” I asked Walker.
“Yeah. I have a lot less fear, which I didn’t even know I was holding before,” Walker responded.
Hadley Vlahos is a 31-year-old hospice nurse, mother of three, and, as of this past summer, a New York Times bestselling author: Her debut book, The In-Between: Unforgettable Encounters During Life’s Final Moments, recounts her journey to end-of-life caregiving, delves into some of the more mystical things she’s witnessed as her patients die, and explores the impactful relationships she’s made along the way. The In-Between—SELF’s November Well-Read Book Club selection—is a deeply moving reflection on many of the fears that plague all of us, bringing inevitable life experiences like illness, pain, and death gently to the surface.
I recently chatted with Vlahos about her job, caregiving, grief, talking to her kids about dying, and how to support the people you love when words simply don’t feel like enough.
SELF: What advice would you give to a first-time caregiver for someone who is living with a terminal illness or dying?
Hadley Vlahos: Don’t be afraid to ask for help and take it day by day. For many people, caregiving is a marathon, not a sprint. I come in during the last six months of someone’s life—by that point, it’s not uncommon for patients’ caregivers to have already been in that role for many years. It’s not sustainable to care for someone else for that long without a break. If your neighbor offers to sit with your loved one so you can go get groceries by yourself or take a nap, take them up on it! There is no shame in asking for or accepting help.
Do you have any tips for caregivers on how they can take care of their own mental health?
Recognize that anticipatory grief—grieving a person who is still physically alive but no longer themselves due to their illness—is completely normal, but it does make the task of caregiving more difficult. If it’s feasible, I would absolutely recommend getting a therapist or licensed mental health counselor. Caregiving can be isolating and overwhelming. Having someone to help you through those emotions can make a world of a difference.
Is there a part of death and dying that you used to be afraid of but no longer scares you?
I used to be very scared of the unknown. What happens when we die? Does nothing happen? Is it going to hurt? Now that I’ve been with so many patients as they’ve died, I no longer fear it. I witness patients process their inevitable death and come to peace with it. I watch patients see their deceased loved ones before they die and feel very comforted by their presence. For me, I now know that no matter what happens at the end, I have the option to be comfortable and calm. Knowing what a good death looks like and that I should be able to have it makes the thought of death not scary for me.
What’s a common misconception about death that more people should be aware of?
I think that most people feel like their death is out of their hands and out of their control. Many patients feel like they get a terminal diagnosis and are told what to do and when to do it: Get this surgery, get labs drawn, take this medication, etc. They feel like they have no other choice.
The reality is that patients are allowed to say “okay, enough,” and elect to go home on hospice care. Patients are allowed to prioritize what’s important to them at the end of life. For some people that is treatment, but I often hear that patients were not aware that they could choose hospice sooner than they did.
What do you think more people should know about hospice care?
It isn’t as depressing as it seems. I know, death seems depressing, but the reality is that it is unavoidable. I think that most people think of death as an if instead of a when. Death is going to happen to all of us. Hospice care is attempting to make it better by putting the patient’s comfort as the priority. I think that’s beautiful.
I’m curious to hear your take on what planning and logistical discussions about death we should have with loved ones, but also what we should be asking them about life in general. Have you noticed any patterns after guiding so many families through the process?
Absolutely! Practical questions should include “What does a good death look like to you?” This is different for everyone. Some people absolutely want to be at home, while others would rather be anywhere else. Some people want all of their loved ones there while others want privacy. At some point, you should find out your loved one’s funeral wishes as well—are religious traditions important to them? What do they want for a final resting place: burial or cremation?
I always ask my patients what their goal is while on hospice, and their answers vary greatly. Sometimes it’s as simple as slightly reduced pain, and others want to be able to get out of the house one last time and check something off their bucket list.
When it comes to asking personal questions, I tend to go with the flow, as every patient is different. If a patient is naturally reviewing their life and telling me stories, I will ask them if they have any regrets. The answers people have are fascinating. I not only like to listen to their stories, but I like to think about why that instance in particular stands out to them. I had a patient recently who told me multiple times about missing his daughter’s dance recital when she was younger because he had to work. I imagine that he probably missed many family functions due to his job, but for some reason that one really stood out to him. One day, I asked him why he thought that was. He said that he missed the recital because he had picked up an overtime shift after buying a car that was priced above his means. “That car is probably just rusty parts in a junkyard now,” he said, which really stood out to me.
What can we all do to support the caregivers in our lives, especially for those who are coping with a terminally ill loved one?
If you live near someone, offer specific help. Oftentimes, I see people saying, “Let me know what I can do for you.” While this is well-intentioned, many caregivers feel burdened by it. They don’t know what that includes. Are you willing to come stay with their loved one for an afternoon? Or are you just offering a phone call? Instead, offer specific help. Try: “I’m dropping off dinner this week. Does Tuesday work for you?” Or “I’d love to stay with [their loved one’s name] for a few hours so you can do anything you need to. Does Sunday afternoon work?”
If you’re further away, my go-to is sending a Doordash (or another delivery service) gift card with a heartfelt text. I do this both for my friends who are caregivers and my friends who are grieving.
How did your experience as a young, single mom shape your career as a caregiver?
It taught me a lot of empathy. It taught me that we’re all just doing the best we can and that the best someone can do is going to look different for everyone. I learned that casting judgment on someone, as so many people did to me, isn’t going to change their circumstances. It’s just going to make someone feel bad about their circumstances. If we have the choice to make someone feel worse or better about themselves, why wouldn’t we choose the latter?
You’ve spoken onTikTokabout raising your three kids in a “death-positive household.” What does that mean and look like?
For me, it’s about not avoiding the topic. I was raised in a death-positive household as well—my grandparents are funeral directors, and I think that normalizing the topic of death is very important. If someone dies I say that they died. If my kids have questions I answer them honestly in an age-appropriate way. I don’t ever change the subject to avoid feeling uncomfortable.
How early did you start having those conversations with your kids?
As soon as they could talk and understand. A simple way to incorporate this is with bugs and flowers. When your child notices that a bug or a flower has died, you can say that it died. I don’t make a big deal about it, but I do use those words—dead, died, and dying—in my day-to-day language. If I’m talking about my day and a patient died, I will tell my children that they died. My 10-year-old sometimes has questions and I answer them honestly. I recently explained to him what the process of a death visit is like for me, including calling time of death, talking to the family, and assisting the funeral home. He listened intently, then went back to eating his dinner.
