Last summer, six months before my mother died, I walked into her bedroom, and she greeted me with tinny hello and a big smile. She then resumed a conversation with her mother – who had died in 1973.
“Where are you?” Mom asked, as though Grandma, a onetime Fifth Avenue milliner, was on one of her many European hat-buying junkets. As I stood there dumbstruck, Mom continued chatting – in a young girl’s voice, no less – for several more minutes. Was this a reaction to medication, a sign of advancing dementia? Or was she preparing to “transition” to wherever she was going next?
Regardless, Mom was freaking me out – as well as my brother, sister and father.
As it turned out, my mother’s chat with a ghost was a signal that the end was inching closer. Those who work with terminally ill people, such as social workers and hospice caregivers, call these episodes or visions a manifestation of what is called Nearing Death Awareness.
“They are very common among dying patients in hospice situations,” Rebecca Valla, a psychiatrist in Winston-Salem, N.C., who specializes in treating terminally ill patients, wrote in an email. “Those who are dying and seem to be in and out of this world and the ‘next’ one often find their deceased loved ones present, and they communicate with them. In many cases, the predeceased loved ones seem (to the dying person) to be aiding them in their ‘transition’ to the next world.”
While family members are often clueless about this phenomenon, at least at the outset, a small 2014 study of hospice patients concluded that “most participants” reported such visions and that as these people “approached death, comforting dreams/visions of the deceased became more prevalent.”
Jim May, a licensed clinical social worker in Durham, North Carolina, said that family members – and patients themselves – are frequently surprised by these deathbed visitors, often asking him to help them understand what is happening. “I really try to encourage people, whether it’s a near-death experience or a hallucination, to just go with the flow,” May explained after I told him about my mom’s visitations. “Whatever they are experiencing is real to them.”
Valla agreed, telling me what not to do: “Minimize, dismiss or, worse, pathologize these accounts, which is harmful and can be traumatic” to the dying person. In fact, May said, “most patients find the conversations to be comforting.”
That certainly appeared to be the case with my mother, who had happy exchanges with several good friends, who, like my grandmother, were no longer living.
In a moving 2015 TED talk, Christopher Kerr, the chief medical officer at the Center for Hospice and Palliative Care in Buffalo, showed a clip of one his terminally ill patients discussing her deathbed visions, which included her saying, “My mom and dad, my uncle, everybody I knew that was dead was there (by my side). I remember seeing every piece of their face.” She was lucid and present.
Since Mom had already been diagnosed with advanced dementia, I originally thought her talks were a sign of worsening illness. In fact, current research posits that a combination of physiological, pharmacological and psychological explanations may be at play. That’s exactly what May’s hands-on experience of more than 14 years revealed to him, too.
May acknowledged that it’s understandably “hard to have empirical evidence” for such episodes in patients, but that it’s important for family members and health professionals to figure out how to respond
Last fall, another visit to Mom raised the stakes. As before, she greeted me by name and spoke coherently for several minutes before she turned to the bookcase near her bed and began cooing to an imagined baby. I watched in astonishment as Mom gitchi-gitchi-goo-ed to an apparition she referred to as “her” baby.
“My baby is very sick,” she repeated, clearly deeply concerned about this apparition. “She’s very thirsty. She’s hungry. She’s crying. Can’t you do anything for her?”
I didn’t know what to do. Neither did my siblings or Dad. I had long stopped “correcting” Mom. A year earlier, Mom had regaled me with the story that my niece Anna had made a delicious dinner the night before and was at that very moment out doing errands. In fact, Anna was away at college; also, I’ve never seen her cook, and she doesn’t even have a driver’s license. But why contradict Mom’s vision of a perfect granddaughter?
Social worker May, when asked about these sorts of imaginings, put it this way: “Don’t argue, because an argument is not what they need.” I decided to go along with the “baby” story and told Mom I was going to take the baby to the kitchen to bottle-feed her, which alleviated the crisis.
As the fall days grew shorter, Mom’s “baby” was a continuing presence at my visits, with my mother becoming increasingly distressed. I would settle things down by giving the imagined infant an imaginary bottle, or cradle her in my arms and leave the room for a while, saying I was taking her to the doctor. At one point I asked gently, “Mom, do you think the baby is you?” She didn’t miss a beat. “Yes,” she replied. “The baby is hurting.”
In fact, the largest study to date on deathbed visions reported on numerous cases when the “arrival of … a visitor appeared to arouse anxiety and intensify death fear.”
But what to do? I hated that Mom’s level of distress was skyrocketing in what turned out to be her final weeks. I simply held Mom’s hands a bit tighter and tried to distract her as best I could with family and political news. Oh, and I cooked, which she loved my doing.
One evening I made a simple dinner: spaghetti with a store-bought marinara sauce and a bright green leafy salad. Mom had pretty much stopped eating by this point, which is common as the end draws near, but she made a show of trying her best with this repast for the two of us, plus my father. It was heartbreaking to watch her try to spear the pasta, but she managed several hearty mouthfuls, saving room for a scoop of Sealtest vanilla ice cream.
After dinner, I helped her back to bed, where she exclaimed: “How did you know?” “How did I know what?” I asked. “That was exactly how I wanted my funeral to be. You invited all my favorite people, and the food was just what I would have ordered.”
She was beaming. Six weeks later, she passed – and pasta and salad were on the menu at her service.
If someone you love has died in a hospital, you may have seen modern death at its worst: overly medicalized, impersonal, and filled with unnecessary suffering. The experience can be a bitter lesson in Buddha’s most basic teaching: the more we try to avoid suffering (including death), the worse we often make it.
Even though roughly half of Americans die in hospitals and other institutions, most of us yearn to die at home, and perhaps to experience our leavetaking as a sacred rite of passage rather than a technological flail. You don’t have to be a saint, or be wealthy, or have a Rolodex of influential names to die well. But you do need to prepare. It helps to be a member of at least one “tribe,” to have someone who cares deeply about you, and to have doctors who tell you necessary truths so that you can decide when to stop aggressive treatment and opt for hospice care. Then those who care for you can arrange the basics: privacy, cleanliness, and quiet, the removal of beeping technologies, and adequate pain control. They can listen and express their love, and provide the hands-on bedside care hospice doesn’t cover.
From then on, a more realistic hope for our caregivers, and for ourselves when we are dying, may not be an idealized “good death” by a well-behaved patient, but a “good enough death,” where we keep the dying as comfortable and pain-free as possible, and leave room for the beautiful and the transcendent—which may or may not occur.
Hospice professionals often warn against high expectations. Things will probably not go as planned, and there comes a point when radical acceptance is far more important than goal-oriented activity. They don’t like the idea, inherent in some notions of the “good death,” of expecting the dying to put on a final ritual performance for the living, one marked by beautiful last words, final reconciliations, philosophical acceptance of the coming of death, lack of fear, and a peaceful letting go.
“I don’t tell families at the outset that their experience can be life-affirming, and leave them with positive feelings and memories,” said hospice nurse Jerry Soucy. “I say instead that we’re going to do all we can to make the best of a difficult situation, because that’s what we confront. The positive feelings sometimes happen in the moment, but are more likely to be of comfort in the days and months after a death.” This is what it took, and how it looked, for the family of John Masterson.
John was an artist and sign painter, the ninth of ten children born to a devout Catholic couple in Davenport, Iowa. His mother died when he was 8, and he and two of his sisters spent nearly a year in an orphanage. He moved to Seattle in his twenties, earned a black belt in karate, started a sign-painting business, and converted to Nichiren Shoshu, the branch of Buddhism whose primary practice is chanting. He never left his house without intoning three times in Japanese Nam Myoho Renge Kyo (“I Honor the Impeccable Teachings of the Lotus Sutra”).
He was 57 and living alone, without health insurance, when he developed multiple myeloma, an incurable blood cancer. He didn’t have much money: he was the kind of person who would spend hours teaching a fellow artist how to apply gold leaf, while falling behind on his paid work. But thanks to his large extended family, his karate practice, and his fierce dedication to his religion, he was part of several tribes. He was devoted to his three children—each the result of a serious relationship with a different woman—and they loved him equally fiercely. His youngest sister, Anne, a nurse who had followed him to Seattle, said he had “an uncanny ability to piss people off but make them love him loyally forever.”
When he first started feeling exhausted and looking gaunt, John tried to cure himself with herbs and chanting. By the time Anne got him to a doctor, he had a tumor the size of a half grapefruit protruding from his breastbone. Myeloma is sometimes called a “smoldering” cancer, because it can lie dormant for years. By the time John’s was diagnosed, his was in flames.
Huge plasma cells were piling up in his bone marrow, while other rogue blood cells dissolved bone and dumped calcium into his bloodstream, damaging his kidneys and brain function. He grew too weak and confused to work or drive. Bills piled up and his house fell into foreclosure. Anne, who worked the evening shift at a local hospital, moved him into her house and drove him to various government offices to apply for food stamps, Social Security Disability, and Medicaid. She would frequently get up early to stand in line outside social services offices with his paperwork in a portable plastic file box.
Medicaid paid for the drug thalidomide, which cleared the calcium from John’s bloodstream and helped his brain and kidneys recover. A blood cancer specialist at the University of Washington Medical Center told him that a bone marrow transplant might buy him time, perhaps even years. But myeloma eventually returns; the transplant doesn’t cure it. The treatment would temporarily destroy his immune system, could kill him, and would require weeks of recovery in sterile isolation. John decided against it, and was equally adamant that he’d never go on dialysis.
After six months on thalidomide, John recovered enough to move into a government-subsidized studio apartment near Pike Place Market. He loved being on his own again and wandered the market making videos of street musicians, which he’d post on Facebook. But Anne now had to drive across town to shop, cook, and clean for him.
The health plateau lasted more than a year. But by the fall of 2010, John could no longer bear one of thalidomide’s most difficult side effects, agonizing neuropathic foot pain. When he stopped taking the drug, he knew that calcium would once again build up in his bloodstream, and that he was turning toward his death.
An older sister and brother flew out from Iowa to help Anne care for him. One sibling would spend the night, and another, or John’s oldest daughter, Keely, a law student, would spend the day.
Christmas came and went. His sister Irene returned to Iowa and was replaced by another Iowa sister, Dottie, a devout Catholic. In early January, John developed a urinary tract infection and became severely constipated and unable to pee. Anne took him to the University of Washington Medical Center for what turned out to be the last time. His kidneys were failing and his bones so eaten away by disease that when he sneezed, he broke several ribs. Before he left the hospital, John met with a hematologist, a blood specialist, who asked Anne to step briefly out of the room.
Anne does not know exactly what was said. But most UW doctors are well trained in difficult conversations, thanks to a morally responsible institutional culture on end-of-life issues. Doctors at UW do not simply present patients with retail options, like items on a menu, and expect them to blindly pick. Its doctors believe they have an obligation to use their clinical experience to act in their patients’ best interests, and they are not afraid of making frank recommendations against futile and painful end-of-life treatments. When the meeting was over, the doctor told Anne that her brother “wanted to let nature take its course.” He would enroll in hospice. Anne drove him home.
John knew he was dying. He told Anne that he wanted to “feel everything” about the process, even the pain. He took what she called “this Buddhist perspective that if he suffered he would wipe out his bad karma. I said, ‘Nah, that’s just bullshit. You’ve done nothing wrong. The idea that we’re sinners or have to suffer is ludicrous.’” She looked her brother in the eye. She knew she was going to be dispensing his medications when he no longer could, and she wasn’t going to let him suffer. She told him, ‘You’re not going to have a choice.’”
Anne said she “set an intention”: not to resist her brother’s dying, but to give him the most gentle death possible and to just let things unfold. On January 15, her birthday, she and John and a gaggle of other family members walked down to Pike Place Market to get a coffee and celebrate. John was barely able to walk: Anne kept close to him so that she could grab him if he fell. It was the last time he left the house.
The next morning, a Sunday, while Anne was sitting with John at his worktable, he looked out the window and asked her, “Do you think I’ll die today?” Anne said, “Well, Sundays are good days to die, but no, I don’t think it’s today.” It was the last fully coherent conversation she had with him.
He spent most of his last nine days in bed, as his kidneys failed and he grew increasingly confused. He didn’t seem afraid, but he was sometimes grumpy. He had increasing difficulty finding words and craved celery, which he called “the green thing.” He would ask Anne to take him to the bathroom, and then forget what he was supposed to do there. His daughter Keely took a leave of absence from law school, and Anne did the same from her job at the hospital. Fellow artists, fellow chanters, former students to whom he’d taught karate, nephews, nieces, and sign-painting clients visited, and Anne would prop him up on pillows to greet them.
Anne managed things, but with a light hand. She didn’t vet visitors, and they came at all hours. If she needed to change his sheets or turn him, she would ask whoever was there to help her, and show them how. That way, she knew that other people were capable of caring for him when she wasn’t there. “The ones that have the hardest time [with death] wring their hands and think they don’t know what to do,” she said. “But we do know what to do. Just think: If it were my body, what would I want? One of the worst things, when we’re grieving, is the sense that I didn’t do enough,” she said. “But if you get in and help, you won’t have that sense of helplessness.”
Each day John ate and spoke less and slept more, until he lost consciousness and stopped speaking entirely. To keep him from developing bedsores, Anne would turn him from one side to the other every two hours, change his diaper if necessary, and clean him, with the help of whoever was in the room. He’d groan when she moved him, so about a half an hour beforehand, she’d crush morphine and Ativan pills, mix them with water as the hospice nurse had showed her, and drip them into John’s mouth.
One morning her distraught brother Steve accused her of “killing” John by giving him too much morphine—a common fear among relatives, who sometimes can’t bear to up the dose as pain gets worse. At that moment, the hospice nurse arrived by chance, and calmly and gently explained to Steve, “Your brother is dying, and this is what dying looks like.”
The death was communal. People flowed in and out, night and day, talking of what they loved about John and things that annoyed them, bringing food, flowers, candles, and photographs until John’s worktable looked like a crowded altar. Buddhists lit incense and chanted. Someone set up a phone tree, someone else made arrangements with a funeral home, and one of the Buddhists planned the memorial service.
Most of the organizing, however, fell to Anne. It may take a village to die well, but it also takes one strong person willing to take ownership—the human equivalent of the central pole holding up a circus tent. In the final two weeks, she was in almost superhuman motion. She leaned in, she said, “into an element of the universe that knows more than I know. I was making it up as I went along. People contributed and it became very rich.
“That’s not to say there weren’t times when it was phenomenally stressful. I was dealing with all the logistics, and with my own mixed emotions about my brother. I was flooded with memories of our very complicated relationship, and at the same time I knew my intention was that he be laid to rest in the most gentle way possible.”
Hospice was a quiet support in the background. Over the two years of his illness, John’s care had perfectly integrated the medical and the practical, shifting seamlessly from prolonging his life and improving his functioning— as thalidomide and the doctors at UW had done—to relieving his suffering and attending his dying, as the hospice nurses and those who loved him had done.
There were no demons under the bed or angels above the headboard. Nor were there beeping monitors and high-tech machines. His dying was labor-intensive, as are most home deaths, and it was not without conflict.
A few days before he died, two siblings beseeched Anne to call a priest to give John last rites in the Catholic church. “It was a point of love for my siblings. They were concerned that John was going to burn in hell,” Anne said. “But John hated priests.” In tears, Anne called the Seattle church that handled such requests, and the priest, after a brief conversation, asked her to put her sister Dottie on the phone. Yes, Dottie acknowledged, John was a Buddhist. No, he hadn’t requested the sacraments. Yes, his children were adamantly opposed. No, the priest told her, under the circumstances he couldn’t come. It wasn’t John’s wish.
Ten days after the family’s last walk through Pike Place Market, the hospice nurse examined John early one morning and said, “He won’t be here tomorrow.” She was seeing incontrovertible physical signs: John’s lips and fingertips were blue and mottled. He hadn’t opened his eyes in days. His breathing was labored and irregular, but still oddly rhythmic, and he looked peaceful. The hospice nurse left. Anne, helped by John’s daughter Keely and his sister Dottie, washed and turned John and gave him his meds. Then they sat by his side. Anne had her hand on his lap.
“It was January in Seattle,” Anne said. “The sun was coming through the window and we could hear the market below beginning to wake up. We were just the three of us, talking and sharing our stories about him and the things we loved and didn’t love, the things that had pissed us off but now we laughed about. I can’t ever, in words, express the sweetness of that moment.
“He just had this one-room apartment with a little half-wall before the kitchen. I walked over to put water on to make coffee, and Keely said, ‘His breathing’s changed.’”Anne stopped, ran over, sat on the bed, and lifted her brother to a sitting position. He was light. She held him close, and during his last three breaths she chanted Nam Myoho Renge Kyo, as her brother had always done, three times, whenever he left his house. “I was really almost mouth-to-mouth chanting, and he died in my arms,” she said. “We just held him, and then my sister Dottie said her prayers over him.”
Anne sat next to her brother and said, “John, I did well.”
“I know he would not have been able to orchestrate it any better than how it unfolded,” she said.
“It was a profound experience for me. I realized what a good death could be.”
Palliative care patients will be treated with the psychoactive ingredient in magic mushrooms in a bid to reduce their anxiety during end of life care.
The first of 30 patients in Melbourne’s St Vincent’s Hospital trial will be treated with psilocybin in April after a year-long battle to have the study approved by the ethics committee, as well as state and federal authorities.
Patients will be given a single dose of the psychedelic drug, which stimulates feelings of euphoria and is believed to be able to ease anxiety, fear and depression for up to six months.
Applicants will be screened, requiring a state government permit to take the medication, and will be closely monitored by two clinicians on the ‘dose day’ while the initial high wears-off.
“With therapists in the room providing therapy it will allow people to have a heightened awareness of their situation, see the problem and work through it,” Mark Bowie, director of Palliative Medicine at St Vincent Hospital, said.
St Vincent’s clinical psychologist Dr Margaret Ross said patients in the study will be given a single dose of the drug in capsule form.
A similar trial conducted at New York University found 70 per cent of patients later reflected on the psilocybin experience as one of the top five most spiritually significant experiences of their entire lives, while 87 per cent reported increased life satisfaction overall.
Vice President of Australia’s Psychedelic Research In Science and Medicine Association Dr Stephen Bright told 9News that the study “sets a precedent” for more research into the medical application of psychoactive substances.
“I think it’s fantastic this study has been able to obtain the requisite approval, there have been multiple attempts to use psychedelics which have all been knocked back,” Dr Bright said.
“The fact that this has been able to secure approval is very encouraging.”
Dr Bright, also a senior lecturer at Edith Cowen university, is currently attempting to secure funding and ethics approval for another study on the potential of MDMA to be used in the treatment of Post-Traumatic Stress Disorder.
A spokeswoman for Palliative Care Australia told 9News.com.au anxiety is a common and distressing symptom for those entering the final stage of their life.
“This can be triggered by concerns and fears about how they will die, how their families and loved ones will cope as well as existential or spiritual concerns,” the spokeswoman said.
Pull the headset over your eyes and the world around you fades. You have become 66-year-old Clay Crowder, and you are dying.
Your doctor looks into your eyes and quietly explains that medical treatments aren’t working. The lung cancer has spread. You have four to six months left.
Later at home, you doze while listening to your wife and two daughters discuss your care with a hospice worker. As death nears and pain intensifies, you see what’s happening inside your body. Your lungs and rib cage begin to heave rapidly. Medication eases your discomfort. Your breathing returns to a slow rattle.
Family members gather around your bed. You hear them talking. Prompted by a hospice nurse, your wife tells you that it’s all right to let go.
“It’s OK, honey,” she says. “You’ve got your girls here.”
It’s tough being Clay, a new interactive, virtual reality video that lets the participant go through one man’s end-of-life experience. Hospice of Southern Maine and the University of New England are using the computer simulation lab as a learning tool for health care professionals, medical students, hospice workers and patients’ loved ones.
A box of tissues is always nearby.
“It’s powerful,” said Susan Mason, clinical services manager for Hospice of Southern Maine. “I’ve been a hospice nurse for five years and I was truly shocked at how much I hadn’t considered before I went through the experience as Clay. You truly feel like you’re in it.”
Clay Crowder, family man and military veteran, is the creation of Embodied Labs, a Los Angeles-based company that has produced several computer sim labs designed to put people in a patient’s body.
The University of New England in Biddeford has been using the company’s virtual reality technology for nearly two years, to help medical students better understand what it’s like to experience health problems as common as hearing loss and as devastating as Alzheimer’s disease.
Now, Hospice of Southern Maine, based in Scarborough, is using the Clay lab to give staff and family members a better sense of what it’s like to die. Even the most experienced hospice caregivers can find themselves reaching for a tissue and learning something new.
Hospice CEO Daryl Cady said she believes the Clay lab has the power to change the way people feel about death and hospice care, especially for younger generations who are familiar with virtual reality technology.
“It’s so important that people understand how hospice can help at the end of life and not fear it,” Cady said. “If they take just 30 minutes to put on the VR goggles and stand in the shoes of someone with a terminal illness, just think of the change that could make.”
POPULATION AGES, DEMAND GROWS
Cady said the Clay lab also gives hospice staff and volunteers an opportunity to witness the conversations that happen when a physician delivers a terminal diagnosis and the family dynamics that often come into play.
Such education and outreach is expected to become increasingly important as Maine’s population continues to age and demand for hospice care grows.
Maine’s population is now solidly the oldest in the nation, with the highest median age of 44.7 years – meaning the younger population is dwindling – and tied, with Florida and Montana, for the largest proportion of residents age 65 and older – 19 percent of the state’s 1.3 million people, according to the U.S. Census.
Hospice of Southern Maine’s clinical teams – nurses, social workers and others – visit about 200 patients daily, up from about 130 patients daily just three years ago. Last year, the agency cared for a total of 1,641 patients – either at home or at Gosnell Memorial Hospice House in Scarborough – a 2 percent increase over the previous year, according to the nonprofit’s annual report.
Maine’s use of hospice services has grown steadily in the last decade, Cady said. When Hospice of Southern Maine started operating in 2004, about 9 percent of Medicare-eligible Mainers used hospice services, placing the state at 49th in the nation. By 2013, 57 percent of eligible Mainers were accessing hospice care and the state had moved to 25th in the nation, according to Medicare data.
“The Clay lab will help us educate the community about the end-of-life experience,” Cady said.
BASED ON FAMILY EXPERIENCE
Inside the Clay lab, with the virtual reality goggles over your eyes, you experience the transitions that patients and family members must make throughout the dying process.
When the doctor says you have a few months to live, you turn to your left and see the pained look on your wife’s face. To your right, your feisty daughter presses the doctor to explain why surgery is no longer an option. Your family is adamant. They won’t let you just “fade away.”
Later, you wind up in the emergency room after a serious fall. A compassionate nurse explains some of the benefits of hospice care. Mostly it’s about doing what you’re able to do and keeping you comfortable.
“It comes down to how you want to spend the time you have left,” she says.
Embodied Labs was started in 2016 by four young technology entrepreneurs. CEO Carrie Shaw, a medical illustrator and health educator, was just 19 years old when she helped care for her mother, who had early-onset Alzheimer’s.
That experience prompted Shaw to wonder if putting health care providers in their patients’ skin might make them more effective. Her older sister, Erin Washington, designs the company’s curriculum.
First, the company produced a sim lab experience called Alfred James, a 74-year-old African-American man with advanced macular degeneration and high-frequency hearing loss.
Next, they created Beatriz Rogers, a middle-aged Hispanic woman who progresses through the early, middle and late stages of Alzheimer’s. Clay Crowder is their latest.
LINKS TO UNE, MAINE HOSPICE
All three sim labs are required viewing in the geriatrics education program at UNE’s College of Osteopathic Medicine, one of the few med schools in the nation that require significant training in aging-related health issues.
“Students are always amazed at the experience of becoming Alfred or Beatriz or Clay,” said Marilyn Gugliucci, director of UNE’s geriatrics program. “It’s always interesting to see how they respond to Alfred’s frustration that his doctor is treating him as if he has cognitive impairment when he doesn’t. He just can’t see or hear well.”
Embodied Labs, UNE and Hospice of Southern Maine have developed mutually beneficial relationships, Gugliucci said.
The Clay lab was created after a team from Embodied Labs spent 48 hours at Gosnell House, interviewing staff members and witnessing all that they do, similar to the experience that several UNE med students have each year.
More recently, another team from Embodied Labs spent 48 hours in the dementia unit at the Maine Veterans’ Home in Scarborough, where UNE med students go to learn what it’s like to live in a nursing home, Gugliucci said.
The team’s experience will be woven into the next virtual lab, which will feature a Muslim woman who has Parkinson’s disease and Lewy body dementia, the second most common form of dementia after Alzheimer’s disease.
‘WHAT ACTIVE DYING LOOKS LIKE’
The Clay lab is presented in three segments: terminal diagnosis, decision to start hospice care and death.
“You see what active dying looks like, including what actually happens to the body,” Carrie Shaw said. “Our goal was to make something that’s not scary or grotesque, but it is informational.”
The last segment takes place in Clay’s bedroom.
Again, you are Clay.
Your eyes are nearly closed and your vision limited as family members and caregivers come and go. You hear them talk about your cold feet and your blue hands. Your daughter wonders if you need a feeding tube. The hospice nurse quells her concerns about your declining need for food.
Your death is shown symbolically. An imaginary great blue heron that has visited you before, capturing your fading attention to this world, appears again and flies off from the foot of your bed.
You watch the rest from above as your wife and daughters take turns saying goodbye.
The hospice nurse returns to bathe and dress you in your military uniform. She speaks to you in a gentle, now familiar voice, as if you are still alive.
“Mr. Crowder, we’re going to take care of your body now, OK?” she asks.
Your experience as Clay Crowder ends as your casket, draped in an American flag, is wheeled out of the house.
With more Americans living longer and aging in place, more also want to die at home.
Few, however, actually do.
Karen Clayton of Oak Harbor believes more terminally-ill individuals and their caregivers might choose home end-of-life care if they knew more about the physical and emotional support provided by hospice services.
“It’s my passion to demystify hospice so patients and families will use this truly extraordinary care,” she said. “I believe most people think hospice is a really good thing—for someone else. They do not realize they can have six months of quality end-of-life care wherever they live.”
Clayton’s just-released book, Demystifying Hospice: Inside the Stories of Patients and Caregivers, is based on years of experience working as a social worker in public and private hospitals, a hospice, and with the American Cancer Society. She plans to discuss her book and the topic of hospice care at a series of presentations and workshops around Whidbey Island this fall.
Clayton describes herself as a hospice social worker, sociologist, author and a story catcher.
Studies have shown that approximately 80% of Americans would prefer to die at home, if possible. Despite this, 60% of Americans die in acute care hospitals, 20% in nursing homes and only 20% at home.
According to the National Hospice Foundation, many people at the end-of-life are being referred to hospice care too late or not at all.
Many Americans don’t realize hospice care is a benefit of Medicare, Medicaid, VA benefits, and many other insurance plans, Clayton said. Additionally, hospice organizations can help those with no insurance.
“Hospice offers at least six months of care for terminally ill patients and their caregivers,” she added. “So, it’s stunning that, in 2015, half of the U. S. hospice patients had this truly extraordinary care for 17.4 days or less and one-third for seven days or less.”
Home hospice services consist of a team of professionals who regularly visit patients at home and are available 24 hours a day. Nurses, social workers, chaplains and nurse aides comprise the main team and some services also provide massage therapists, even instrumentalists, such as harpists, to play soothing music.
Hospice services also supplies medication and delivers equipment, such as hospital beds, wheelchairs and personal hygiene items.
Clayton’s book doesn’t focus on medical problems but rather the emotional and practical help given by socials workers to patients, caregivers and families.
“The caregiver receives training and support from the team, and it is difficult,” Clayton said. “It helps to have someone to talk with about the types of feelings involved; fear, grief, anger, curiosity about how to help in the best way.”
She also provides caregiving tips and suggests ways to connect with people in their final days.
“It’s good when families spend time with photo albums, old family films, games, movies, playing checkers or chess, remembering the good times in their lives, the things they have contributed through their job or service,” Clayton said. “Quality of life can be maintained when patients are offered activities, food, family interactions within the limits they have.”
Clayton’s book describes the hope, healing and support that home hospice care offers.
Each story addresses some aspect of helping families through the caregiving and grieving process and it offers comfort and understanding to readers who may be going through similar experiences.
“These stories will lift your spirits and touch your heart,” Clayton said. “It’s a joyful thing to learn how to provide good physical and emotional care for the person you love.”
Karen Clayton will discuss hospice care and her book at the following free events open to the public:
Three Journeys: Writing, Caregiving, Publishing; 3 p.m., Thursday, Oct. 18, Friends of the Library, Oak Harbor Library
Palliative care experts say it is not uncommon for people in hospice care to perk up briefly before they die, sometimes speaking clearly or asking for food.
By Judith Matloff
Susan Linnee had not eaten for weeks by the time she entered a Minneapolis hospice on Oct. 5. A 75-year-old editor, she was dying of a brain tumor and as her body weakened, she grew confused and stuporous. But suddenly, 17 days later, she perked up and asked for what her brother, Paul, called “odd food”: dill pickles, liverwurst and seed bread. Relatives fetched the delicacies and she nibbled a few bites. More animated than in previous days, she engaged in lucid conversation. Soon thereafter, she slipped into a barely responsive state and died two weeks later.
In speaking with the medical team, her brother learned that the brief rebound his sister experienced was called an “end-of-life rally.” Palliative care experts say revivals are common, although no one knows exactly why.
“There’s great mystery around this,” said John Mastrojohn, the executive vice president of the National Hospice and Palliative Care Organization. “But everyone who works in the sector has a story.”
Anecdotally, doctors and nurses interviewed for this article said that a striking number of their dying patients had experienced a rally, also known as terminal lucidity. Bounce-backs generally last only a couple hours, but some go on for so long that the patients can take a break from a hospice for a few months.
Dr. Craig Blinderman, the director of adult palliative medicine at the Columbia University Medical Center, hears lots of accounts. Yet evidence-based data is elusive, if nonexistent, he said. Aside from the challenges of catching dying people at the moment of springing back, it’d be tough to get the medical ethics board to determine that the research would benefit the patient. This type of study would require constant drawing of blood and monitoring of patients, which runs counter to the quiet fade away that is a signature element of palliative care.
Dr. Blinderman has theories about causes, however. He postulated that as organs shut down, they can release a steroidlike compound that briefly rouses the body. In the specific case of brain tumors, swelling occurs in the confined space of the skull. The edema shrinks as hospice patients are weaned off food and drink, waking up the brain a bit.
These windows of energy can startle family members sitting at the bedside. Those who hold out hope that their loved ones may somehow recover may see the comebacks as encouraging. Some find the little flickers disturbing or even heartbreaking.
“I always provide a lot of anticipatory guidance, that you should not be surprised or alarmed or that it means that your loved one is healing,” Dr. Blinderman said. “Obviously you don’t want to dash hopes, but you have to make clear that Dad is not rising like Jesus Christ.”
Dr. Janet Bull dispenses the same advice, as chief medical officer at the Four Seasons Compassion for Life, a nonprofit hospice care organization in North Carolina. During her 18 years in the field, Dr. Bull has seen many rallies, but one in particular stands out.
“I had this one patient, he was demented for years, and then he said things near the end that blew away his mom,” she recalled with wonder. “He hadn’t had a meaningful conversation with her for 10 years.”
Physiologically, experts believe that the mind becomes more responsive when a hospice patient is taken off the extensive fluids and medications such as chemotherapy that have toxic effects. Stopping the overload restores the body to more of its natural balance, and the dying briefly become more like their old selves.
Mr. Mastrojohn speculates that the social support at a hospice can give the chronically ill more pep than in a sterile hospital where they’re hooked up to machines.
Then there’s a spiritual or psychological component, which defies scientific explanation. Hospice professionals note a compelling desire to say goodbye or bond with loved ones in those last moments. There’s no way to test this hypothesis, but there’s no way to falsify it, either.
“People know when they are dying. They have this internal gut feeling that tends to expand at the end of life, and they seek a strong final connection,” said Dr. Bull.
Other doctors nodded their heads when told about Ms. Linnee’s request for a last meal. They said that often ralliers will ask for a particular food associated with childhood or comfort. The request is generally explicit, say, a Diet Sprite rather than any old beverage.
Dr. Martha Twaddle cited the case of an Illinois woman in her 50s who was reaching end-stage heart failure. She had been barely reactive, but then sat up and asked for a hamburger famous in Skokie.
“It’s some enormous hamburger, the size of your face with all this stuff on it. She took two bites and then fell back asleep,” said Dr. Twaddle, a physician associated with the Northwestern Medical Group in Lake Forest, Ill., who has worked in palliative care since 1989.
She has had nonreactive patients jolt up to ask for a relative, or share final wishes before they die. “Sometimes they want to give instructions to the family, like, ‘Don’t forget to take care of the car.’ Something mundane but important to them.”
Palliative care experts suggest accommodating a loved one’s request, no matter how odd it may appear.
Dr. Charles Wellman, the longtime chief medical officer at the Hospice of the Western Reserve in Cleveland, has had patients who become alert only for the doctor. They will not talk for days, and then their eyes open when Dr. Wellman walks into the room. “I think they get tired and withdrawn,” he speculated. “They’re transitioning to another existence, and they have work to do on that. Maybe they get annoyed with family, but they might make an effort to respond to the doctor.”
But rallies frequently revolve around a relationship, particularly if the patient is waiting for a child to come from out of town to pay last respects.
“We had one patient whose son was in the military,” Dr. Twaddle said. “There was no way the son could get to her for a month. The woman was out of it during that time. He finally came. She responded, and then passed 15 minutes later.”
The London-based film-maker’s proposal was accepted, and he managed to get access to film in a hospice on the Isle of Wight.
He speaks fondly of his time there, saying: “These are four people I really cared about – Alan, Roy, Mary and Jamie; three were in their 80s and one was in his 40s.”
Steven regularly made the five-hour journey to the hospice, including the boat trip to the island, which features in the slow, often hypnotic imagery of the documentary and its trailer.
He made the film after having “two quite significant bereavements – my mother-in-law and my best friend, who was the same age as me.
“So I realised I didn’t know very much about what palliative care is.”
Steven thinks we need to face the reality of death, make it part of our daily existence, so it’s less frightening.
“I think we all have an existential fear – ‘if I see someone I love who’s died, it’ll be too traumatic, it’ll replace all the images I have of them, I’ll never be able to unsee it, somehow it’ll hurt me’.
“But for me it isn’t the case, being with someone after dying, with that intimacy. I found it quite empowering and peaceful.”
He has huge admiration for the people who work in hospices, and hopes his film can “celebrate and show what palliative care is”.
“The most radical, extraordinary people in our society are the least visible,” he says.
“They’re the carers. And the care we receive at the end of our lives is extraordinary.
“These hospices which people have anxiety about going into – they’re not morbid, sterile spaces, they’re places of life.”
He says that after one of the screenings of Island, a stranger approached him, saying it had made him “less afraid of dying”.
Steven adds: “It’s not an ambition of mine, but if you can sit through the film and at the end feel uplifted, if you can make some kind of peace with something that will happen to all of us, then that’s a good thing.”
He speaks fondly about all his subjects, talking at length about Alan, whose death we see at the start of the film. Alan died of cancer.
‘He was living to smoke’
“Alan had chain-smoked since he was 16 and he smoked in the hospice with a nurse lighting his cigarette. But he wasn’t dying of a smoking-related cancer.
“This is part of what palliative care is – helping someone smoke until they die.
“The doctors felt that if he hadn’t been smoking he would have died several weeks earlier – he was living to smoke.”
Alan invited him to film his last moments.
“The second time I met Alan, we had a connection, he said, ‘I think you’d like to stay with me all the way through and I think that would be great’.
“He wanted to do something radical with his death, he felt quite radical about his life.
“He believed our tissue is just a vehicle and we translate into something else.
“As far as he was concerned, there was no self-consciousness around his image, he thought participating was a way of marking something of his philosophy. He became my movie star, he was like my Burt Lancaster.”
Steven recalls watching Alan die.
‘Bliss in his eyes as he died’
“His death was a long, running out of breaths. It was very peaceful and very beautiful and I felt really moved by it. I didn’t feel sad. He was really ready to die.”
Alan told Steven he had seen a man die when he was just 19, during active service in the forces in North Africa. His commanding officer was shot, and died in his arms.
“He held this man and said, ‘I saw bliss in his eyes as he died, and I knew that what we are experiencing now is not it, there’s more’.
“So for him, his death was the thing he’d been waiting for. We can’t all ask for that.”
Steven acknowledges that of course deaths can be sudden or premature, such as Jamie’s.
“Jamie had stage 4 stomach cancer and had a young family, his attachment to his daughter was so incredible.
“He wanted to die in the best way he could with his daughter, so he involved her in everything, talked about his treatment, about what it was going to be like when he’s not there.
“He’s the person who I get upset thinking about.”
The film has been used to help medics in handling end of life care, and Steven and his producer are partnered with Sussex NHS trust.
“We’ve run two sessions with trainee doctors, to use the film as a means to talk about how we speak around death and dying, and how we talk to patients.”
He’s also keen to attract a young audience as he says people in their 20s are the “biggest death deniers”.
Steven talks about the pressure to be “productive, youthful, to look good”.
“This idea that we’re terminal and have an end is too much. I’ve spoken to young people who think about their late life and say, ‘oh I just want to take a pill to end it, when I’m no longer viable I switch myself off’.
“I do think it’s challenging to confront your own mortality.”
Steven, who also volunteers at his local hospice, thinks other cultures handle death better than we do, saying in Ireland “you see a more sustained grieving process and more familiarity being around the body”.
He also talks about Latin America and Asia, where they have “a completely different attitude towards the dying process”.
“I think we need better education – we are finite, our bodies do decay, and I’ve made my peace with that.
“I hope the film can return us to some extent to our biological bodies, and say yes, everybody will die, most people will die in this way, in their 70s or 80s from either heart disease or cancer, and the care will be extraordinary.
“I don’t find that a burdensome thought. I felt poorly informed, and now I feel better informed by making the film – I hope that it will do that for people.
“We die and we don’t have to turn it into some kind of sanctum, it’s life. And I think Alan showed me that, so yeah, I was very, very fortunate to be invited to film him.”