Think back to the day you received your diagnosis of cancer. How soon did thoughts about death or dying come to your mind? For me, thoughts about death occurred within seconds after I received the news I had prostate cancer.
What’s surprising to me is how often I think about death seven years later, even though my last PSA test came back undetectable.
I’m five years out and I think about it almost daily.
I don’t think about it any more often than before I was diagnosed with prostate cancer.
Most days.
Every day.
I think of death too often.
The first thing I noticed was the variety of answers I received. I expected everyone to say they thought about it multiple times every day.
The answers I received suggest there’s a wide variation in how often cancer survivors think about death and dying.
The frequency of thoughts about death and dying is less important than the conversation we engage in with ourselves each time we think about dying.
My initial thoughts about death were terrifying. I imagined spending months in agonizing pain that no amount of medication would successfully manage.
I imagined my life savings would be wiped out by high deductibles and out-of-pocket expenses. I was convinced I wouldn’t live long enough to walk my daughter down the aisle, become a grandparent, retire in good health or travel with my wife.
I have a long list of friends, family and acquaintances who died within the year of receiving their diagnosis. Therefore, the possibility of surviving cancer never entered my mind.
I expected to go down hill rapidly and die within the first year after I received my diagnosis.
Every time I engaged in self-talk about dying, it ended the same way. I’d feel distressed, fearful, pessimistic about the future and overwhelmed with grief and sadness.
I wanted to protect my wife, so I kept these conversations to myself. I believe she wanted to protect me from her fears, so we coped with our individual fears together, but alone. In doing so, we deprived ourselves of the comfort and support we had to offer each other.
There are healthy, life-affirming ways to think about your own death, but where can you find them?
The Bible helped me overcome my fear and pessimism. These three verses were life changing:
Teach us to number our days, that we may gain a heart of wisdom. (Psalm 90:12).
A diagnosis of prostate cancer taught me to number my days. Since then, every part of my life changed.
Before my cancer diagnosis, if you said to me, “You’re going to write two award-winning books, write articles and cut your work schedule down to three days a week.” I wouldn’t have believed you. Yet, that’s exactly what happened.
O death, where is thy sting? O grave, where is thy victory? (1 Corinthians 15:55)
This verse is a powerful reminder to me that death isn’t the last chapter of my life.
We are confident, I say, and willing rather to be absent from the body, and to be present with the Lord (2 Corinthians 5:8)
This verse reminds me of where and with whom I’m going to spend eternity.
I’m no longer distressed when I think about death and dying. I’m reminded to use my remaining time wisely. My relationships, my priorities, my values and how I use my time, skills and talents were all transformed.
Your thoughts, feelings, past experiences, attitudes, religious beliefs and your personal history coping with loss will all impact the way you speak, comfort or cause distress as you think about your mortality.
Anna Benton, of Milwaukee, left, Georgette Paxton, of Madison, center, and Jennifer Snow, of Waunakee, look over Heather Ockler, of Monona, who is playing the role of a dying person wrapped in a shroud during a home funeral demonstration. It was part of a death midwife class taught last month by Sharon Stewart, who helped aspiring death midwives practice skills such as washing and shrouding a body. Death midwives, sometimes called death doulas, are increasingly helping families prepare for and navigate the death of loved ones, in addition to or instead of hospice care and funeral homes.
[B]efore Valli Warren’s husband died last year after a long illness, the Stoughton couple knew they wanted a home funeral and green burial.
But they weren’t sure how to make those things happen. They turned to Sharon Stewart, who delivered ice packs to preserve the body, shared videos about how to wrap it in a shroud and taught pallbearers how to carry it out of the house on a board.
Stewart also helped Warren file paperwork, including a permit letting her transport her husband to Circle Cemetery, near Barneveld, where he was laid to rest without being embalmed or using a casket or vault.
“She walked me through every phase,” Warren said.
Stewart is a death midwife, a new kind of occupation that provides emotional, spiritual and practical support to families before and after death — in addition to, or instead of, hospice care and funeral homes.
The service, which has emerged around the country over the past decade, is analogous to what birth midwives do compared to obstetricians. Some who offer the assistance call themselves death doulas or end-of-life midwives.
‘Back to their roots’
Whatever the title, the providers say they help people “take back” the death process from hospitals and funeral homes. Services include leading family discussions about death planning, sitting vigil with people as they die, helping family and friends wash the body afterward and aiding in tasks such as selecting memorial cards, sending obituaries to newspapers and closing social media accounts. It often involves home funerals or green burials.
“We’re taking families back to their roots, the tradition of when we were born and when we died in our own homes,” said Stewart, a former detective who lives near Brooklyn, south of Madison. “We laid in honor in our parlors, and the community came together to provide care for the family.”
Liz Humphries, a former birth midwife and hospice nurse who recently added an end-of-life doula service to Seasons of Life, her senior care company in Middleton, said, “It’s about reclaiming a really sacred and beautiful human experience.”
Mary Paulauskis, a former hospice nurse from Madison, has added what she calls end-of-life transitions counseling to her business, Mindful Awakenings, through which she teaches meditation.
Paulauskis focuses on helping people think about who and what they want around them as they die. She also coaches loved ones on what to say to a dying person and how to interact — letting them know it’s OK to lie next to the person if they want to, for example.
“It’s creating a space of whatever the patient said they want,” Paulauskis said.
Many people don’t realize that there are several ways to dispose of bodies without embalming, including new, greener types of cremation, said Angie Buchanan, a death midwife in Waukesha who trains death midwives around the country. She informs clients of the options and guides them through their choice.
“We’re the water that runs between the rocks of the medical profession and the funeral industry,” Buchanan said.
Dr. Toby Campbell, chief of UW Health’s palliative care program and a board member of Agrace Hospice and Palliative Care in Fitchburg, said he understands why death midwives are catching on. He said hospice care typically includes two or three visits a week from a nurse or social worker, and an occasional call from a doctor.
“That leaves about 99 percent of the time you and your family are on your own,” Campbell said. “That’s a big space. There are giant gaps between the health care system and death, even including hospice.”
Jim Olson, president-elect of the Wisconsin Funeral Directors Association, said caring for a body after death and managing a funeral are big jobs. Most people will continue to seek help from funeral directors, he said.
Death midwifery is “another alternative for families, which we think is great,” said Olson, who owns Olson Funeral Home and Cremation Service in Sheboygan. “Am I afraid it’s going to affect my business? No, absolutely not.”
There is no licensure or government certification for death midwives. Experienced practitioners, such as Stewart and Buchanan, offer training, as does the New Jersey-based International End of Life Doula Association, which held a session in Madison last year.
Many training programs offer their own certification. The burgeoning field is in a similar situation to massage therapy in the 1990s, before doctors pushed for its regulation, Buchanan said. In Wisconsin, certification for massage therapists started in 2003, with licensure beginning in 2010.
Fees for death midwives vary. Buchanan said she charges $100 for a consultation and up to $2,000 for services covering the whole death process. Stewart has accepted donations of $100 or $200 from some clients, but she doesn’t plan to establish rates until she retires from her day job, at the state public defender’s office, and devotes more time to death midwife duties.
Paulauskis said she plans to charge $25 to $50 for a counseling session and negotiate rates for other services but let people pay what they can. An academic adviser at the UW-Madison School of Social Work, she plans to continue making her living in other ways.
Humphries, who started her end-of-life doula service last month, said she might charge $40 to $100 an hour but offer a sliding-fee scale for people with low incomes.
Humphries is also an organizer of Walking Each Other Home Madison, a group that started in 2014 to help people carry out home funerals and green burials. People can rent the group’s home funeral kit, which includes a body board, ice packs, soap, lotion, diapers, latex gloves and small bags of rice to place over the dead person’s eyes to keep them closed.
‘The personal touch’
Stewart, who has long volunteered at Monroe Clinic’s hospice program, said she saw the need for a more personal death service after her brother died in a car crash at age 19. She was 21.
Police came to the house in the middle of the night, told her mother her son was dead and left. Stewart wanted to see her brother’s body before he was embalmed, but the funeral director wouldn’t let her, she said.
“There had to be a better way,” she said.
Later, as a detective for the Lafayette County Sheriff’s Department in Darlington, Stewart tried to deliver death notifications with more sensitivity. But she wasn’t able to do all she wanted to help grieving families. After a shoulder injury forced her to retire, she discovered death midwifery.
“I thought, ‘This is it. This is the personal touch. This is the attention that families need,’ ” she said.
At a death midwife class she taught last month, Stewart told students to help dying people reconcile with others if they ask, separate arguing family members at the bedside if necessary and encourage loved ones to say goodbye and leave the room if the dying person wants to die alone.
“Your job as a death midwife is to be an advocate for that dying person,” she said.
When Laurie Larson’s husband, Dennis Presser, died suddenly from a heart attack at age 54 four years ago, Stewart helped Larson and her two teenage children navigate the chaos.
Stewart joined Larson when she met with a funeral director to plan the funeral, which took place at the funeral home.
She organized an intimate gathering for family and close friends at the crematorium, with candles, incense and music. As Presser’s body lay inside an open cardboard cremation box, people read poems, told stories and colored the box. Then they placed him in the chamber, and Larson hit the ignition switch.
“I would never have had the energy to create that beautiful ritual,” said Larson, of Madison. “Sharon helped me in so many ways that I never would have thought I needed to be helped.”
Warren’s husband, Spencer, died at 64 from amyotrophic lateral sclerosis, or ALS, also known as Lou Gehrig’s disease.
Stewart helped the couple carry out their wishes. His body remained at home for three days, instead of being whisked off to a funeral home. “I had time to be with him; it was very healing,” Warren said.
As family and friends came for the home funeral, volunteers changed ice packs beside his body as he lay on their bed for viewing. Warren drove him to Circle Cemetery, where gatherers sang and played guitar before shoveling dirt over his shrouded body.
“It was the most natural thing I’ve ever experienced,” Warren said.
Buddhist teacher Frank Ostaseski has been one of the leading voices in contemplative end-of-life care since the 1980s.
By Lion’s Roar Staff
[I]n this video, Ostaseski talks with Lion’s Roar’s Lindsay Kyte about the lessons he’s learned at the bedsides of thousands of dying people, his new book The Five Invitations, and the future of end-of-life care.
[E]lizabeth George was “tickled” to see what came after death.
She knew what she wanted her death to be like and she wasn’t afraid.
Diagnosed with colon cancer in 2010, Elizabeth told a friend she wanted three things to happen when she died: A singing circle, for a few select people to be present, and for her body not to be “whisked” off right away.
“Elizabeth really wanted to have a good death,” recalls one of her close friends, Ruth Blaser.
A childhood experience with death may have been what made Elizabeth so particular about her own passing. She lost her mother at age 11.
“She felt like the family response had been extremely unhealthy,” says Emily Wilson-George, one of Elizabeth’s two daughters. “They basically took everything that had belonged to her mother out of the house within the week and never spoke about it. She didn’t want that or anything remotely similar.”
Three days before she died, Elizabeth met with two death doulas. Together, along with friends and family, they ensured her death would go as planned.
A home vigil was organized. Elizabeth’s body was not whisked off to the morgue or a funeral home. Rather, she was moved to her dear friend Joyce Bethune’s house, gently placed on a massage table in a room full of tropical plants and a water fountain — a place where she found peace.
Joyce Bethune, left, and Ruth Blaser stand where they held a home vigil for their good friend Elizabeth George in Regina. George passed away last January from colon cancer.
Elizabeth’s fearless and accepting attitude toward her own mortality is often the exception.
“When you talk to people about how they feel about their own death, it’s a bit of a mood killer,” says Wilson-George. “It’s not really considered an acceptable topic of conversation.”
But an emerging cohort of death doulas in Regina is bringing death, dying and grief out of the shadows and into the light.
“There seems to be more healing when we can be sharing through grief, sharing through death,” says Denise Seguin Horth, one of the death doulas who met with Elizabeth. “So many other cultures embrace death more.”
Seguin Horth trained to become a death doula in 2016, through Beyond Yonder Virtual School for Community Deathcaring in Canada.
During a 14-week online course, participants learn advanced planning, home funerals, post-death body care, end of life financial considerations, grief, celebrant skills, death care rituals and more. A practicum is recommended, but not required.
“I feel that people have been so distanced from death that grief is heavier. It’s almost like a secret … It weighs on you and it just keeps you anchored down,” says Seguin Horth. “When we can talk more about death and talk more about grief openly without the taboo, … it seems to help that energy flow elsewhere so that we can move on.”
Sharon Pulvermacher — who also met with Elizabeth — did her training in 2014. She has been fascinated by death and the stages of grief since Grade 12 when she wrote a paper on death and dying.
Pulvermacher says being a death doula not only gives the dying person and their families a safe space to express themselves, but it’s also an opportunity to share with them their end-of-life options.
She says many people don’t even realize it’s within their rights to take the body of their loved one home for a vigil or home funeral, if that’s what they want to do.
“It’s … giving them a few more ideas, a few more tools, that they can imagine a little bit more largely than what they would do otherwise,” says Pulvermacher.
Defining death doulas
Definitions vary, but the core role of death doulas is to provide comfort and support to the dying and their families. Death doulas do one-on-one sessions, home vigils, simply sit with the dying person in the hospital holding their hand, and more.
“All death doulas have different niches. For me personally, I feel drawn more to accompanying those who are dealing with grief,” says Seguin Horth, who volunteers at Regina Wascana Grace Hospice.
She works with a variety of people — those who may have lost a limb or a pet, recently divorced or, like Elizabeth, someone who is in the last days of their life.
Besides the practical services death doulas offer, such as planning home funerals or helping with living wills, they also act as a sounding board for people to express their fears and musings about death, the afterlife and more.
A death doula brings no emotional or personal baggage that a friend or family member might and allows people the freedom to express themselves fully.
Sharon Pulvermacher is one of a few death doulas in Regina.
Where it began
Phyllis Farley, a key U.S. figure in the birthing centre movement, attended an end-of-life care conference in 1998. At the time, she was a chairwoman at the Maternity Center Association, an organization devoted to providing high-quality maternity care. She realized the same hands-on help and emotional support women receive when giving birth is just as important during death.
“We’re more than willing to, and very happy to in many cases, celebrate the birth of a child. While the potential of connections and the wonderful things they might do is always there, we don’t know that, but yet we celebrate it,” says Charisma Thomson, a professor at the University of Regina whose research centres on the anthropology of death.
But we deal with death differently.
“Here we have an individual at the end of their life, who we should be celebrating because we know what they’ve accomplished,” Thomson says. “Yet it’s that moment when … people just turn their back on them and really kind of silence their voice.”
At 80 years old, Farley founded an organization called Doulas to Accompany and Comfort the Dying. The program taught doulas how to listen and relate to the dying person, as well as do more practical things like helping with a living will.
The field grew and made its way to Regina, where there are about 10 death doulas. Some charge for their services, some don’t. Every death doula is different, and every person who seeks their services is looking for different things.
For Elizabeth’s daughter, the death doulas were invaluable.
“I think that having the death doulas not only provided the ritual that allowed us to process (her death) better, but it relieved a lot of the pressure,” she says. Not having to worry about the practical and procedural aspects of the vigil meant she could focus on being with her mom and getting closure.
But for many, the response to death may be much like when Elizabeth’s mother died — pushing death away.
Thomson traces society’s shift — from direct involvement in what happens to the body after death, to the current very institutionalized process — back to the Civil War in the United States, when embalming became common practice.
“You have Dr. Thomas Holmes during the Civil War starting to use embalming to send the soldiers back home … Once we start to add this clinical aspect to it, people I think believed it was beyond their abilities,” says Thomson.
As embalming became more popular, families sought professionals to do it — taking aftercare out of the hands of the family.
Around the same time, society decided priests were not qualified to declare time of death, and from then on only medical specialists could. Thomson says this shift also pushed death closer to the clinical realm rather than a personal one.
“We view death, or in North America anyway, … as though it is an illness or a disease or something that we can overcome with technology and science,” says Thomson.
And today, death happens in a hospital more often than not. When somebody dies, their body is typically moved to the morgue or the crematorium swiftly, giving family and friends little time with the body.
Bethune remembers a different time when home vigils were common.
“There was time for people to say their goodbyes and the whole process was a natural process,” she says. “I think we’ve just gotten so far away from that.”
She says having death doula services to help with things like home vigils or simply talking people through death is essential.
“It means that we don’t push our grief down into our subconscious, into our bodies. It means that we deal with it, that this is a natural part of life,” says Bethune.
Elizabeth wanted her family to have the time to say goodbye. So instead of denying the inevitable, she met it with playful curiosity.
“I know it sounds strange, but I’m a bit tickled at what’s coming next,’ Elizabeth told Seguin Horth, who describes that approach as beautiful. “She went past the fear.”
Denise Seguin Horth works as a death doula, and is shown standing at Riverside Memorial Park Cemetery. Death doulas support people in the process of dying.
During her meeting with the death doulas, Elizabeth was asked about her belief system and what she wanted her friends, family and the doulas to do when she died. According to Blaser, they also asked her what she imagined death to be like — a bold question friends and family might not feel comfortable asking.
“It was like mom didn’t have any doubts about what the death doulas were about,” says Wilson-George. “I was sitting there being like, who are these people? They’re sitting in on what’s a pretty personal time.” But in the end, she was grateful for their role in her mother’s end of life.
When the time came, Elizabeth’s vigil lasted a full 24 hours.
Someone from Alternatives Funeral & Cremation Services moved Elizabeth to Bethune’s home from the hospice, which she had entered just five days earlier. With no official certification or oversight board, death doulas are restricted from physically transporting a body.
“We sang her out of hospice with a favourite song of hers, and she had a quilt that had been made specially for her, draped over her,” recalls Pulvermacher.
Then they sang her into Bethune’s home where Seguin Horth and Pulvermacher positioned her body on a massage table and placed ice packs around her — looking after the practical and hygienic aspects of the vigil. They also made sure the family knew what to expect in terms of how the body would act in the hours after death.
A few close friends and family stayed the entire time. Others came and went to pay their respects. More songs were sung and memories of Elizabeth shared. Wilson-George remembers the feeling in the room as surprisingly intimate and radiantly positive.
For Blaser, the process with the death doulas helped her prepare.
“When Elizabeth died, I (felt) a sense of peace that we really accompanied her well and that it was her time to go,” she says. “That doesn’t mean that I don’t miss her. I do. But it’s not a wrenching kind of grief.”
For Emily Wilson-George it meant closure. After having seven years to imagine what her mother’s death would be like, Wilson-George went through so many different kinds of dread. The death doulas, along with friends and family helped minimize that fear.
“I think that they way that we managed to honour her death was something she would have approved of,” she says. “The feeling in the room that evening with the death doulas … it was so positive.
“I’m grateful to them for creating the space, for creating the opportunity.”
[M]ark Harris says funeral directors talk about it all the time. More and more people are growing tired of traditional funeral services and opting for something a little more creative. “It’s getting more difficult to offer the cookie-cutter send-off,” explains Harris, the author of Grave Matters, which examines how people have started to think, er, outside the box about death.
And so, Harris wasn’t surprised to hear that a new British company is offering to send cremated remains to the stratosphere. High-altitude latex balloons will float to 100,000 feet above the surface of the Earth, where the curvature of the planet appears against the darkness of space, and then release the ashes into the cold, creating a glittering display. “Scatter your loved one’s ashes in space,” Ascension Flights says on its website. “We are all made of stardust.” The stratosphere is not technically space, but for their purposes, it’s close enough.
Ascension Flights, run by funeral directors and a near-space launch firm, will soon offer its high-altitude funerals, with the cheapest package starting at £795, or about $1,040. For more money, customers can choose the launch site and have the scattering photographed and filmed
The near-space funeral is, at first glance, a contrast to “green” burials, which return remains to the soil in biodegradable coffins or urns. In this way, the deceased can meet “the green reaper,” as a Guardian article in 2014 colorfully put it, and contribute to the physical processes of the Earth. Blasting ashes into the stratosphere sure sounds like the opposite of that, but Ascension Flights promises some kind of return to the planet. “As the particles eventually return to Earth, precipitation will form around them, creating raindrops and snowflakes,” its website explains. “Small amounts of nutritious chemicals will stimulate plant growth wherever it lands.”
Harris, who favors going the natural route, said this promise seems considerably less certain than that of green burials, where at least “I wouldn’t have to worry about having my loved one’s ashes raining down from space on some random location like a landfill or a Superfund site or a nuclear power plant,” he said.
Both kinds of memorials are part of the same growing trend in end-of-life affairs, Harris said. People are becoming increasingly interested in how their physical remains, and the remains of their loved ones, will be handled. They want something more personal and more personalized.
These days, people can forgo metal caskets and be buried in bamboo or recycled cardboard instead, or have their remains wrapped in banana leaf, cotton, or wool. A company called Eternal Reefs will fashion an environmentally friendly artificial reef out of cremains—cremated remains—and drop it into the ocean for nearby marine life to populate. Cremains can be pressed into diamonds, incorporated into paint, and ejected as fireworks. The variety of options for the dead reflects the consumer culture of the living, says Phil Olson, a Virginia Tech professor who studies funeral practices, like the home-burial movement. “There are at least seven kinds of Coke, 500 kinds of cigarettes—options, options, options,” Olson said. Consumers want just as many choices in death as in life.
The option to send a loved one’s ashes to actual space has existed for several years already, for a steeper price than Ascension Flights charges. Since 1997, the company Celestis has flown missions into space delivering the cremains of dozens of people, including Star Trek creator Gene Roddenberry. The payload is launched inside a capsule to more than 300,000 feet, beyond the boundary of space, and eventually falls back to Earth.
While the concept of commemorating life’s final frontier in the final frontier may seem incredibly high-tech, the emotion behind it is no different than run-of-the-mill funerals on Earth. Funeral services can be, in the end, more for the benefit of those who are left behind than those who’ve passed away. They are about processing grief, and grief is personal. For some, the thought of sending their loved one’s ashes into the stratosphere is, simply, very fitting, and it’s difficult to pin down the exact reasons why.
Olson points to alkaline hydrolysis as an example of the funeral industry misunderstanding its customers. Providers of alkaline hydrolysis, which reduces bodies to skeletons in a liquid solution, believed the appeal of the process came from its eco-friendliness. They later found that the primary reason people gave for choosing hydrolysis was that they perceived it to be gentler than cremation. “For some reason, people see being dissolved in caustic alkaline as being gentler than being incinerated,” Olson said.
Perhaps having more options to memorialize the dead may ease the grieving process in some way, he said, even if it’s not clear exactly how.
“We can speculate all we want for people’s motivations for doing this, but we could be dead wrong,” Olson said of the high-altitude memorial and, when I laughed in response, quickly realized his choice of words. “Sorry, pardon the pun. I didn’t even notice that.”
[A] lot of Ron Fleming’s fellow soldiers spent the last five decades trying to forget what they saw and did in Vietnam. Now 74, Fleming has spent most of that time trying to hold on to it. He has never been as proud as he was when he was 21.
“I take issue with those who say we lost. We didn’t lose that war,” he said, sitting on the edge of his hospital bed at the San Francisco VA medical center. “Everywhere I went, we literally kicked the crap out of them.”
Fleming was a door gunner in the war, hanging out of a helicopter on a strap with a machine gun in his hands. He fought in the Tet Offensive, sometimes 40 hours straight, firing 6,000 rounds a minute. But he never gave much thought to catching one himself.
“You see, at 21, you’re bulletproof,” he said. “Dying wasn’t on the agenda.”
But now, it is. Fleming has congestive heart failure, arthritis and breathing problems. He often lands in the VA hospital with asthma attacks, and the palliative care team visits him regularly. He thinks about death.
“I wish it’d get off its ass and come on me. I’m sick of this crap,” he said, as his heart rate monitor ticked up. “You see, dying’s the easy part. Living is what’s hard.”
Fleming has had trouble holding down a job since he got back from the war. He had a girl he lived with for 10 years, but they never married, never had kids. He lives alone in Oakland now. He says he angers easily and is always hypervigilant. About 10 years ago, he was diagnosed with PTSD. More than anything, he says, he suffers from a “rotten outlook” on life.
“Sometimes I think that now I’m being paid back for all the men I killed,” he said. “I killed a lot of them. More than I can count.”
Unlike Fleming, some Vietnam vets don’t find out they have PTSD until they have just months or weeks left to live. Symptoms of terminal illnesses, like pain or breathlessness, can trigger flashbacks, making vets feel as threatened as they did on the battlefield.
“The war memories start coming back, they start having nightmares,” said VJ Periyakoil, a palliative care physician at the VA in Palo Alto. She says opioid medications, like morphine and oxycodone, that are often used for treating pain and breathlessness can make PTSD symptoms worse.
“The side effect of those medications, they make you fuzzyheaded,” she said. “Your defenses that you use to cope with the PTSD, which might help repress a lot of the difficult memories, that coping strategy starts to come apart.”
She has had patients tell her: “I would much rather tolerate the physical pain, the cancer pain, than take opioids and my defenses crumble.”
Some vets see their pain or PTSD as retribution for their work in the line of duty.
“Sometimes I’ve had patients refuse medications that might ease their experiences because they feel that they deserve to suffer,” Periyakoil said. “This is redemptive.”
The best thing to do in these situations can be to stand down, she said. With weeks left to live, there isn’t enough time to resolve the mental anguish, and staff have to let patients set the pace and tone for their care.
But doctors and nurses, just like soldiers, hate doing nothing.
“We talk about the moral distress that we have sometimes about really knowing that we’re doing the right thing for this individual, so that we can be present for their suffering, the way they need to do it,” said Patrice Villars, a hospice nurse at the San Francisco VA.
For Ron Fleming, death is still likely a couple of years out. His doctors have been begging him, gently, to consider mental health counseling or antidepressants. But he has refused.
“I don’t want to take psychiatric drugs. The vets call them the happy pills,” he said. “I don’t want any of those, because they change you. I don’t want to change.”
He’s not sure if he deserves to be happy.
“That I don’t know,” he said.
His pain is what connects him to the past. Fleming was awarded 18 air medals for acts of meritorious achievement and heroism. The loss and grief he experienced in Vietnam are woven into the same memories of victory and glory. He doesn’t want treatment that might make that go away.
Americans are living longer with heart disease, managing it as a chronic condition. But there are few rules for these patients as they near the end of life.
Ricky Hurst, whose heart is failing, was told by doctors to get his affairs in order as his condition worsened. More patients like him are living longer with heart failure, but there are no widely accepted guidelines for care as they near death.
[R]icky Hurst’s doctors told him last year that there was nothing more they could do. His heart was failing and he should get his affairs in order. The end was coming.
His family gathered. He spoke to his pastor and resigned himself to death. “If it was meant to be, it was meant to be,” he said.
But. Mr. Hurst, 56, a former ranger and school football coach in Jackson, Mich., is still alive, although his heart continues to weaken. And patients like him are raising a new dilemma for doctors.
Heart disease once killed ruthlessly and quickly; patients like Mr. Hurst succumbed to heart attacks and sudden death from cardiac arrest. But with improved medical care and implanted devices that bolster the heart, a growing number of heart patients survive for years, even decades, coping with a chronic, progressive condition punctuated by crises and hospitalizations.
Their disease at that point is called heart failure — their weakened heart cannot pump enough blood to supply the body’s needs. The number of Americans with heart failure increased to 6.5 million in 2011-2014 from 5.7 million in 2009-2012, according to the American Heart Association.
More than 10 percent of those over age 80 have heart failure, and more patients are living longer with advanced disease. Even as the death rate from heart attacks is falling, the figure for heart failure is rising.
Yet there are no widely accepted guidelines for dealing with these patients as they near death. Cancer specialists regularly move their patients to hospice at the end of life, for instance, but few cardiologists even think of it. Heart patients account for just 15 percent of hospice deaths, while cancer patients make up half, according to a recent study.
Mr. Hurst carries a battery-powered and surgically implanted heart pump.
That paper, published in the Journal of the American College of Cardiology, reviewed a number of ways in which heart patients are let down at the end of life. Implanted defibrillators often remain activated until the very end, for example, even for those in hospice.
A fifth of heart patients with defibrillators get shocked by them in the last few weeks of life, and 8 percent get shocked minutes before dying. Most patients are never told that they can ask that the defibrillators be turned off.
“Getting shocks at the end of life is not really helping patients live longer or better,” said Dr. Larry Allen, a heart failure specialist at the University of Colorado and an author of the study.
“We shouldn’t have a single one of these cases happening,” said Dr. Haider Warraich, a cardiology fellow at Duke University and first author of the study.
Experts often focus on the strides made in preventing and treating heart disease. Its incidence has declined by 70 percent in the past 50 years. People have heart attacks later in life than they used to, are more likely to survive them, and often live for years afterward with few or no symptoms.
“We are very proud” of that progress, said Dr. Patrice Desvigne-Nickens, a medical officer at the National Heart, Lung and Blood Institute.
Still, she added, cardiologists and their patients should be discussing end-of-life options and palliative care earlier in the course of heart failure.
“Everyone is uncomfortable with end-of-life discussions,” she said. “The field of cancer may be ahead of us. We should learn from looking at their example.”
But cardiologists thrive on the dramatic saving of lives, said Dr. Michael Bristow, a cardiologist at the University of Colorado Denver. They devote their professional lives to rescuing patients having heart attacks and bringing them back from the brink.
End-of-life care is not typically their focus; neither do they spend much time pondering what some of their patients may experience in the future. “Those who go into cardiology are not necessarily ones who want to deal with death and dying,” Dr. Bristow said.
The very nature of end-stage heart failure makes it all the more difficult to prepare.
“Very few patients understand the trajectory of the disease,” said Dr. Lynne Warner Stevenson, a heart failure specialist at Vanderbilt University. The path has peaks and valleys, but as the patient declines, each peak is a little lower than the one before.
And often doctors do not tell patients what to expect.
“Unfortunately, when you have patients with a chronic illness like heart failure, everyone thinks someone else will talk about it,” Dr. Stevenson said. “Too often, no one takes ownership of the last stage of the journey with the patient.”
Dr. Ellen Hummel of the University of Michigan, one of a small number of doctors specializing in cardiology palliative care, said the typical patient with cancer will usually experience a “fairly predictable” decline.
“They will be less able to take care of themselves,” she said. “They will be more symptomatic and come back to the hospital more frequently. And once this starts, it will probably continue until they die. Most people can see the end coming.”
But patients with end-stage heart failure are more likely to have wild swings, Dr. Hummel said, veering from feeling better to being terribly ill.
“It is confusing to both the patient and provider. Are they actually dying, or can we rescue them from a particular episode of worsening?”
Dr. Harlan Krumholz, a cardiologist at Yale University, agreed: “The issue is knowing who is really at the end of life.” For patients with heart failure, seesawing between good periods and bad, it can be very difficult to make the call.
Dr. Allen recently discussed all this with a patient, Ed Harvey.
Mr. Harvey, 75, has an implanted defibrillator, and his heart is weakening, pumping progressively less blood. Dr. Allen gave him medications that helped for a while, but, Dr. Allen said, “we have maxed out on what can be done.”
He can’t say with any certainty how long Mr. Harvey has. But now is the time, Dr. Allen told him, to talk about the end of life.
Mr. Harvey still feels pretty good, but “when you have congestive heart failure and it is not getting any better, you know that day is going to come,” he said.
He has been living with heart failure for more than a decade, and fears becoming a burden as his heart gets worse. It is now so weak that the only medical option left is an implantable pump. He knows that soon he will need full-time care.
“I have elected that if it got to that point,” he said, “put me in a hospice and let me go.”
