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.
— If your wishes remain unspoken, you will leave your loved ones in a quagmire of confusion
“So many lives end not in a sudden moment, but in a gradual escalation of pain and suffering where the side effects of treatment do more damage to the quality of life than the disease itself.”
Since our first encounter on a cyber dating site in 2010, my husband and I have had a fluid conversation about death. That includes what we expect from the other should we find ourself hospitalized. Or facing a debilitating condition. Or trapped in a twilight between life and death. In other words, we discuss what we’re willing to endure. And what we are not.
Being able to share our thoughts openly — and discovering we were very much on the same page about quality of life over quantity of life — was a huge relief for both of us.
If that sounds odd or creepy, it may help to know that Bob and I met after each of us lost beloved spouses and longstanding marriages to cancer. From the get-go, caregiving, illness and death were front and center in our lives. Being able to share our thoughts openly — and discovering we were very much on the same page about quality of life over quantity of life — was a huge relief for both of us.
In 2023, our conversation intensified as we experienced two more losses. I appreciated that I could tell Bob that I was relieved that my older brother went quickly after a massive stroke last January that his doctors said would leave Alan’s physical and mental capacities severely impaired. I didn’t want to lose my brother. But even more, I didn’t want Alan to have to slog through years of a life that he would not have wanted.
Death and Illness Part of Our Lives
I knew this because Alan and I had discussed end-of-life wishes many times over the decades. He frequently quoted my parents, who liked to say, “Life is a day in the classroom.” Alan had lived, Alan had learned. After the stroke, I had no doubt that Alan wanted the bell to ring signaling class was over.
Far harder was the seven-month approach to death that my stepson endured before he closed his eyes for the last time in June. Just 41, Adam was determined to try anything and everything to overcome pancreatic cancer. It was upsetting to watch 150 pounds drop off his body because he couldn’t eat. It was horrifying to watch Adam become confined to bed because the cancer deprived him of the use of his legs. It was devastating to watch Adam shift from an autonomous adult to one fully dependent on others.
But all of that paled beside the physical pain Adam endured minute after minute, day after day, month after month. Neither opioids nor fentanyl could quiet his writhing agony. And there wasn’t a damn thing Bob or I could do to ease his pain.
But regardless of whether death is a portal to an afterlife or a final knell, we do share a belief that life is not worth living at any cost.
At night after Adam would go to bed, groaning up the stairs of our condo to lie awake moaning all night, Bob and I would say to each other, “I don’t know how he puts up with this.” We were clear that the literally gut-wrenching treatments were Adam’s choice, and a choice we would honor. We were clear that he was decades younger than either of us and had good reason to fight. But as we made clear to each other night after night, this was a choice neither Bob, at 74, nor I, at 68, would make.
After delving into the requirements surrounding the Medical Aid in Dying measure in our home state of New Jersey, Bob and I told each other that were we in Adam’s situation, we would want out. Where Adam refused to let the words “palliative care” and “hospice” into his hospital room until his very last days, we told each other that we regarded both as blessings, not curse words.
Bob and I do not share a belief about what comes next. But regardless of whether death is a portal to an afterlife or a final knell, we do share a belief that life is not worth living at any cost. So many lives end not in a sudden moment, but in a gradual escalation of pain and suffering where the side effects of treatment do more damage to the quality of life than the disease itself. Both us know that there are situations where we would regard death as the kinder option.
Because we have had front row seats to so much death and dying, we also know that people’s death wishes shift with circumstance. There can be little clarity if end-of-life wishes are shoved aside for a last-minute chat. Instead, we believe that death considerations need to be part of an ongoing discussion — one that needs to be shared not only between us, but with our children, as well.
Sometimes I forget that other people do not share our comfort level with such talk. A few weeks ago, Bob and I dined with a couple, good friends both, who between them have four parents in their nineties. After they laid out the difficult health issues and hard choices they were confronting, I asked if their parents wanted to continue living.
Talking About Death
Their expressions registered surprise at the question. Their answers conveyed more speculation than certainty. Neither seemed to know even if their parents feared or welcomed death at this advanced stage in their lives. Breezily (okay, too breezily), I shared some thoughts about dying, and then we parted.
Nine days later, I got a text from the wife, asking if she could stop by. Waving off my offer of coffee, she got right down to business. “You said some things the other night that scared me,” she said. “I’m worried about you.”
As she talked, it struck me that while she’d been brave enough to raise the sensitive subject of death with me, she didn’t feel she could do the same with her parents.
I blinked, trying to recall our dinner conversation. “Oh,” I said, “you mean the stuff about death?”
She nodded, her expression grim.
“I’m not suicidal, if that’s what you’re thinking,” I said.
Her expression relaxed a notch.
I reminded my friend that Bob and I had met because we’d each lost our spouses. I assured her that death was a natural part of our discussion. I reminded her that I’m a grief coach. That death comes up a lot in those conversations, too. Then, I apologized — sincerely — for having scared her. “You’re a good friend,” I said.
I felt deeply touched that my friend had cared enough to reach out to me. It’s not easy to open a conversation with someone you fear may be wrestling with mental health issues. To broach the subject had been not only caring, but brave.
After I laid her concerns to rest, our conversation segued into my friend’s feelings of helplessness and confusion about her parents’ care. As she talked, it struck me that while she’d been brave enough to raise the sensitive subject of death with me, she didn’t feel she could do the same with her parents. As a result, she was struggling to figure out what she thought was best for her parents— while not knowing what they thought was best for themselves.
“Have you considered looking into palliative care?” I asked.
“What’s that?” she replied.
Stunned by her response, my feeling of contrition evaporated in a gust of gratitude. Gratitude that Bob and I are able to discuss these difficult issues, not only between ourselves, but with our children. Gratitude that we know and understand each other’s wishes. Gratitude that we will not leave our children to have to make difficult choices we were unable or unwilling to make for ourselves.
Diana Rigg made an impassioned case to legalise assisted dying in a message recorded shortly before her “truly awful” and “dehumanising” death from cancer three years ago.
The actor’s statement calling for a law that gives “human beings true agency over their own bodies at the end of life”, published today in the Observer, adds to the ongoing debate on assisted dying, with MPs expected to publish recommendations to the government within weeks.
It was released by her actor daughter, Rachael Stirling, who promised the star of The Avengers TV series and Game of Thrones that she would share the message with the public.
In the recording, Rigg says: “They don’t talk about how awful, how truly awful the details of this condition are, and the ignominy that is attached to it. Well, it’s high time they did. And it is high time there was some movement in the law to give choice to people in my position. This means giving human beings true agency over their own bodies at the end of life. This means giving human beings political autonomy over their own death.”
Rigg taped her statement on a cassette recorder given to her by her son-in-law, the musician Guy Garvey.
Vividly describing the last weeks of her illness, she says: “I have cancer, and it is everywhere, and I have been given six months to live. And I’m not frightened of describing the least attractive aspects of my condition: the fact of the matter is I have lost control of my bowels. This, to me, is quite the most dehumanising thing that can happen.
“Yet again we found ourselves in the bathroom this morning, my beloved daughter and I, half laughing and half crying, showering off together, and it was loving, and it was kind, but it shouldn’t happen. And if I could have beamed myself off this mortal coil at that moment, you bet I would’ve done it there and then.
“Any palliative nurse will tell you, in the end, patients often starve themselves as a means to an end. The body becomes weaker, the organs shut down. It’s not that they want to die that way. It’s how they take control.
Actors Diana Rigg and daughter Rachael Stirling at the National Theatre, London, in 2005.
“Nobody speaks about this.” They talk about the pain and the dread, she says, but not the awful details of the condition.
Currently, it is illegal in the UK for anyone to assist in another’s death.
Explaining why she is recording her views, Rigg – who was diagnosed with lung cancer in March 2020 and died, aged 82, that September – says: “I’ve always spoken out. I spoke out when I was very young, doing The Avengers, and learned I was earning less than the cameraman. I spoke for peace in Vietnam, in Northern Ireland. I marched for peace in Iraq. I stood up for what is right. I speak my mind. I always have.
“If I see something is unfair, I’ll do my best to address it. I think this is unfair. I think it is unfair that I don’t have a choice. I think it is unfair that other people don’t have a choice.”
Rigg is the latest high-profile figure whose views on the issue have become known. Prue Leith, the restaurateur and Great British Bake Off judge, has been a passionate advocate for assisted dying after watching her brother David die from bone cancer in 2012, when he “endured weeks of agony”.
Broadcaster Jonathan Dimbleby and his brother Nicholas, a sculptor who was diagnosed with motor neurone disease earlier this year, discussed their shared belief in the right to die on BBC Radio 4 recently.
According to an Ipsos Mori poll in July, 65% of people in the UK believe it should become legal for a doctor to assist an adult of sound mind with less than six months to live to voluntarily end their own life, subject to high court confirmation.
The issue is currently being scrutinised by a select committee of MPs, which has heard evidence from both sides of the debate. Its recommendations to the government are expected to be published in the new year.
The assisted dying organisation Dignitas, based in Switzerland, told the committee that it has helped 540 British people kill themselves over the past 20 years.
A private member’s bill on assisted dying in England and Wales was introduced into the House of Lords by Molly Meacher in May 2021 and passed its second reading, but failed to progress before the end of the parliamentary session. Assisted-dying laws are progressing in Scotland, the Isle of Man and Jersey.
Legislation that allows the choice for terminally ill, mentally competent adults is in place in Australia, New Zealand and 10 US states. Broader laws are in place in Switzerland, Spain, Austria, the Netherlands, Belgium, Luxembourg, Canada and Colombia. Campaigners against assisted dying warn that legalising the practice in the UK would increase the risk of coercion and elder abuse. In Canada, where the law recently changed, there have been reports of people being offered help to die if they do not have adequate access to social support and care.
Alistair Thompson, spokesperson for the Care Not Killing campaign group, believes that as more people hear about what is happening in other countries, the more danger they see in changing the law. “There’s been a slow, but growing, shift in public mood. People realise it’s the least well-off in society, the poorest, those who have no voice, who are much more likely to be pressured into ending their lives.
“Where there are people who are experiencing pain, we should be treating their pain. When someone’s feeling suicidal we should be supporting and helping them, not giving them the keys to the drugs cabinet.”
Sarah Wootton, the chief executive of Dignity in Dying, a charity that supports a change in the law, said: “The Canadian law is much, much broader than the one we’re calling for, which is the one in place in Australia, America and New Zealand. I think the most dangerous thing you can do is nothing. A blanket ban is far more dangerous than an upfront regulation of what’s going on, with transparency and scrutiny of the status quo.”
Some people’s suffering is beyond the reach of even good palliative care, she added, but it shouldn’t be “an either, or” – there should be more investment in palliative care as well as the legalisation of assisted dying.
“We need to make end-of-life care fit for the 21st century and that must include having the choice of accelerating what is to somebody an unbearable dying process. It’s a patient-powered movement that will force that change ultimately.”
Referencing high-profile supporters of the campaign, she said: “They’re giving a voice to the thousands of people up and down the country, from all walks of life, who are suffering. Even if people are fortunate enough to be able to pay the £15,000 to get to Switzerland, it’s just no substitute to dying at home surrounded by loved ones.”
More than a dozen states introduced bills to legalize the practice in 2023, which observers say can improve end-of-life systems and processes for families and health care providers.
Death is a taboo topic, especially when someone dies of their own choosing. But there are growing numbers of people suffering with incurable illness who wish to die peacefully, and recently, more states are turning to aid in dying programs so individuals can have more end-of-life health care options.
Last year, Washington saw the highest number of patients—446—die under the state’s medical aid in dying program, up from 387 in 2021.
An increase in the number of people interested in and requesting medication to die indicates states’ need to reevaluate their approach to end-of-life programs, said Arthur Caplan, director of the Division of Medical Ethics at New York University’s Grossman School of Medicine’s Department of Population Health.
Medical aid in dying programs offer a terminally ill adult patient the option to end their life with a prescribed medication if their health conditions severely impact their quality of life, such as living with chronic or unbearable pain and discomfort. Research shows that cancer patients are the most common users of medical aid in dying.
Medical aid in dying is legal in 10 states—California, Colorado, Hawaii, Maine, Montana, New Jersey, New Mexico, Oregon, Vermont and Washington—and the District of Columbia. All states require patients to be more than 18 years old and show no signs that a mental health disorder or intellectual disability could impact their end-of-life decision-making.
New Mexico was the latest state to authorize medical aid in dying in 2021. The new law requires that eligible adult patients must have a prognosis that their illness will result in death within six months, and they must be evaluated by a mental health professional who can assess their mental capacity to pursue medical aid in dying.
As policymakers and the public grow older, states’ interest in legalizing the practice will continue gaining momentum, Caplan said. The number of adults 65 and older, for instance, is projected to swell to 95 million individuals, or 23% of the whole U.S. population, by 2060.
This year, at least 17 states have introduced bills to legalize medical aid in dying, including Florida, Indiana and Maryland, where policymakers and advocates believe the bill will finally pass in 2024 after years of trying.
And in states where the procedure is already legal, policymakers continue to expand access to medical life-ending services. Oregon and Vermont, for instance, eliminated in-state residency requirements for patients seeking medical help with dying. Vermont also repealed a requirement for health care providers to wait 48 hours before writing a prescription for a patient requesting aid in dying.
Hawaii and Washington now allow advanced practice registered nurses to prescribe lethal medications, with the latter extending permission for physician assistants, as well.
While opponents claim medical aid in dying could open up the chance for health care providers or insurers to coerce patients into using the service to increase profits, Caplan said there is little evidence to suggest that happens in states where it is authorized.
Data also shows that the number of patients who do seek medical aid in dying is miniscule. In Oregon, for example, the percentage of patients who used the service in 2022 accounted for less than 0.6% of total deaths in the state, according to a report by the Oregon Health Authority. And of the 432 patients who received end-of-life prescriptions, 84 did not take the medication or later died of other causes.
Oregon was the first state to legalize medical aid in dying in 1994 with its Death with Dignity Act. But research suggests the state’s ground-breaking law has also resulted in more careful evaluation of end-of-life options and efforts to reduce barriers to hospice care.
Medical aid in dying laws can allow medical practitioners to give patients more control over their health care to alleviate the stress and trauma associated with death, said Kim Callinan, president and CEO of Compassion & Choices, a nonprofit advocacy group for patient autonomy of end-of-life planning.
The one thing guaranteed in life is dying, she said. And when policymakers, patients and advocates actively acknowledge that, they can work to improve end-of-life systems and processes.
