A Good Enough Death

“Katy Butler is the author of “The Art of Dying Well,” from which this essay was excerpted in Tricycle magazine. (C) 2019 Katy Butler.”

What does it look like to die well?

By Katy Butler

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.

“In It Together” by Nancy Borowick. Nancy Borowick’s photo series (January 2013 through December 2014) depicts the experiences of Howie and Laurel Borowick, partners for over 30 years, who found their lives consumed by doctor appointments and the shared challenges of chemotherapy.
“The Calm before the Storm”
“His and Hers”

“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.’”

The drive to treatment takes half an hour, and Howie and Laurel Borowick take turns, resting and driving, depending on who’s getting treatment that day. “The Drive to Chemo”
In Laurel’s final moments, her family assured her that all would be OK.
“Last Touch”

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.”

Complete Article HERE!

Palliative-care doctor left wondering ‘what if?’ after patient takes his own life

Dr. Susan MacDonald reflects on ‘Leo’ and whether she should have told him about assisted death

Dr. Susan MacDonald, a palliative care doctor in St. John’s, wonders if more could have been done for her patient ‘Leo.’

By Ariana Kelland

Susan MacDonald can’t quite pick one reason why Leo sticks with her, pushing her to put pen to paper to tell the story of her patient, and how she feels she failed him.

Asked what sets Leo — a pseudonym — apart from the rest, the palliative-care doctor shakes her head and sets her gaze away, “About Leo … I think, for one, I really liked him. I just really liked him.”

The second fact, MacDonald said, is that his death — suicide by taking his own opioids for insufferable pain — was not his only option.

Medically assisted death would have allowed Leo to die without having health-care professionals standing over him in a fruitless attempt at reversing his overdose, she said.

“He was such an intensely private person and his death was so public, and it didn’t need to be that way,” MacDonald said. “There were options. It just really struck me and made me think.”

MacDonald, an associate professor of medicine and family medicine at Memorial University of Newfoundland, reflected on her patient and what she could have done differently, in an article in the Canadian Medical Association Journal, titled Leo Died The Other Day.

The patient died within the last couple of years, MacDonald said, unable to comment further due to physician–patient confidentially. 

To raise — or not to raise — the option of assisted dying

For five months, she and Leo worked hard to control his intense nerve pain. But Leo’s death was inevitable. He had cancer, and by MacDonald’s estimation, had only weeks — maybe months — to live. 

Whether it was the physical pain that became too unbearable or the emotional struggle of his impending death, MacDonald doesn’t know why he took his own life. 

“It was a very distressing clinical case for me because I felt, at the end of the day, I hadn’t done the best I could for this particular patient,” MacDonald said.

“It was a reflective exercise for me to look back and say, ‘What could I have done better? Where are the problems? And what do we need to do about it?'”

MacDonald said she never raised medically assisted death as an option for Leo. Neither did he. But she wonders if some patients want to bring it up but can’t. 

Medically assisted death in Canada is legal. However, MacDonald said, there are no strict guidelines on how a doctor should broach the topic with a patient.

Changing the way she does things

Until Leo’s death, MacDonald would wait for the patient to bring it up, but the manner in which he died has her pausing for second thought. 

“There may be people like Leo, who could avail of that option if they knew about it or if it was offered to them,” she said.

“On the other hand, you have the potential to do harm by raising that question,” she said, adding doctors run the risk of offending patients by even mentioning assisted dying as a option.

Medically assisted death is legal in Canada. However, there are no strict rules guiding how physicians should broach the topic with patients.

“I’ve been doing this for 25 years now, and I still haven’t figured out always the right thing to say and the right thing to do for people.”

MacDonald hasn’t gotten many more inquires about medically assisted death since it was legalized, she said. “Not nearly as many as you’d think.”

Now, as she continues caring for those whose deaths are inescapable, she has Leo to think about.

Complete Article HERE!

When Death Was Women’s Business

In the 19th century, women called “watchers” tended to the dying and the dead.

A woman tending to a sick man, 1861

By: Livia Gershon</a

In recent years, many Americans have begun looking for new ways to approach death. The death-positive movement supports people who prefer to die at home, and even those who wish to care for the bodies of loved ones the way many families did before the rise of the funeral industry. Historian Karol K. Weaver took a close look at that earlier approach, studying the business of death in early nineteenth century Pennsylvania, when care for the dying and dead fell mostly to women.

In those years, Weaver writes, watchers or watch-women—sometimes also referred to with the more generic term “nurse”—tended to the dying. These might be friends, family members, or hired help.

The watchers offered physical care and prayer, and organized visits by clergy and loved ones. Another important part of their job was observing the attitude of the dying person. If they could report a Good Death—characterized by courage and faith—it would comfort the other survivors. On the other hand, a Bad Death filled with struggle and pain could make for a cautionary tale aimed at the insufficiently pious.

Weaver writes that the final and most important job of a watcher was to verify that her charge was dead, observing the cessation of breath and even shaking the body to be sure no life remained.

Once the watcher’s work was done, “layers out of the dead” would wash, dress, and groom the body. They would also close the mouth of the deceased, using a tied cloth or a stick propped between the chin and breastbone, and use coins or other objects to keep the eyes closed. Layers out might also perform the skilled jobs that would later fall to undertakers, such as removing internal organs, blocking orifices, and slowing putrefaction by applying alum-covered cloth or filling body cavities with charcoal.

Like watchers, some layers out were unpaid family members or friends, but others were paid professionals. Looking at Philadelphia city directories from the early nineteenth century, Weaver found business listings for these women. Sometimes, they also advertised themselves as nurses or midwives—jobs that involved intimate care in a domestic setting just as laying out the dead did. Some listed themselves as “widows” in the directories. Weaver writes that this title suggested their connection with death and also explained the lack of a husband’s income that forced them to work for money.

Over the following decades, women’s death work declined. Increasingly, people died in hospitals rather than at home. With the Civil War came the need to transport Union soldiers’ bodies home, inspiring the rapid growth of undertaking as a business—often a father-and-sons affair. Now, families had a one-stop shop for coffin, burial plot, hearse, and the care and preservation of the body.

By 1867, the Philadelphia directory listed 125 male undertakers, one female undertaker, and four female layers out of the dead. The death industry as we know it today had been born.

Complete Article HERE!

Morphine, And A Side Of Grief Counseling:

Nursing Students Learn How To Handle Death


Belmont University’s nursing program started hiring actors like Vickie James to help with their end-of-life simulations for students.

By

Nursing requires hands-on training. But research has found that university curriculum often goes light on one of life’s universal experiences — dying. So some colleges have gone to new lengths to make the training more meaningful.

There’s a sound near the end — the death rattle. People stop swallowing. The lungs fill up. There can be involuntary moaning.

“So you get all that noise. And that’s really distressing for family members,” Professor Sara Camp of Nashville’s Belmont University says.

Camp and other nursing instructors at Belmont wear headsets and watch video monitors in a dark closet. The sounds they make emerge from realistic robots lying in hospital beds on the other side of the wall. The instructors also control the stats for the robots’ breathing, pulse and blood pressure.

Other than administering morphine, there’s no exact prescription for students to follow. A review of nursing textbooks found many make no mention of this standard part of the job. And studies of professional nurses find that many feel unprepared.

Belmont adjunct nursing instructor Morgan Bryant mimics the “death rattle” in her headset, also controlling the pulse, breathing and blood pressure of the simulated patients in the lab.

“They’re really comfortable in their skills, like putting in IVs and giving medications,” Camps says. “In this one, they have to focus on communication, when there’s not that much to do. It challenges them.”

There are family dynamics to navigate, like explaining to grown children how their mother signed a do-not-resuscitate order. They have to balance caring for the dying patient and attending to the patient’s family.

In response to surveys showing anxiety about death among young nurses, Belmont started hiring actors to make these end-of-life interactions as realistic as possible.

“That old cancer … didn’t want it to come back,” says Vickie Bailey, who has embraced her role as a grieving daughter.

The student, senior Sara Lindsay, sits on the bedside and puts a hand on Bailey, warning that the end is near.

“Now would be a good time if you have prayers or anything you want to say,” she tells Bailey.

“I’ve been praying all morning,” Bailey responds, in character.

The monitors stop beeping. Everyone sits in silence.

Once the simulation ends, Lindsay marvels at how real the moment felt.

Half a dozen beds are going at the same time in this simulation lab. And all the students gather to debrief afterward. Senior Zacnite Vargas volunteers that she second-guessed herself.

“Should I say she’s dying? She’s dead? She’s passed?” she asks. “I don’t know how to be straight-forward with it.”

Camp tells the class to be cautious, especially about predicting when a patient will die, but also show compassion.

“They may not remember what you say, but they’ll remember how they feel when you were there, because you were there.”

It’s such important work, Camp says, that more students should get the chance to rehearse.

Complete Article HERE!

Simulated end-of-life journey delivers emotional insights

Maine hospice and health care professionals, medical students and even loved ones can broaden empathic responses via virtual reality.

 


 
by

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.”

A still from Embodied Labs’ virtual-reality simulation of the death of Clay Crowder, a fictional creation, shows the terminally ill man’s two daughters, left, and his interactions with a hospice nurse.

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.”

David Carey, chaplain for Hospice of Southern Maine in Scarborough, interacts with a virtual-reality video depicting the final moments of a terminally ill man’s life. Users say the simulation by Embodied Labs is powerful.

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.

Jaye Van Dussen, community liaison for Hospice of Southern Maine, comforts David Carey after he watched a virtual-reality video depicting the final moments of a terminally ill man’s life.

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.

Complete Article HERE!

Looking after a dying loved one at home?

Here’s what you need to know.

Caring can be very rewarding for both the carer and the patient.

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When someone dies at home, everyone in the family is affected. Looking after a relative who is at the end of their life can be enormously rewarding, but carers have many unmet information and support needs. This can take a toll on their physical and emotional health.

Here are some tips if you are looking after someone nearing the end of their life.

1. Look after yourself

Carers looking after someone with a life-threatening illness have higher levels of emotional distress, including depression and anxiety, than the general population. It’s important you look after yourself.

Self-care might mean finding time to take a break from caring by signing up for yoga classes where calming breathing techniques are practised, or seeking counselling or support groups.

Caring can be very rewarding for both the carer and the patient. Research shows caring can make people feel closer to those they’re caring for. Carers often feel proud that they have been able to look after someone in their last years, months or days of life.

It can be a positive experience to think about the rewards of caring, like spending more time together or knowing you’re making a difference to a loved one at a difficult time.

It’s important you look after yourself.

2. Get informed

Caring for a relative at the end of life is likely a new experience. Many carers are learning on the job and often don’t feel practically or emotionally prepared for the task. Research consistently shows carers want to know how to safely carry out practical caring tasks, like moving the person in and out of bed, preparing suitable meals, and giving medication.

Emotional tasks might include listening to the patient’s worries and helping the patient write down their preferences for care and treatments in an advance care plan. When patients have an advance care plan, carers report less stress because key decisions have already been made and documented.

Palliative care services often have support groups or information sessions, which help carers feel more prepared and better informed. Such groups help meet carers’ information needs. They also increase self-efficacy (the belief of being able to personally succeed in caring tasks).

Recently, distance learning has been offered to carers and evidence shows this helps them feel more prepared to carry out their duties.

A carer’s emotional tasks might include listening to the patient’s worries.

3. Ask for help

Many current approaches to supporting people nearing the end of life involve working with whole communities. Known as compassionate communities, these approaches are based on the concept it is not just up to an individual carer, or the health service, to look after people approaching the end of life. Support can be everyone’s responsibility, from pharmacists, librarians and teachers to employers and colleagues.

Apps, such as Care For Me, and websites can help co-ordinate help from friends, family and the community. The website Gather My Crew offers a way for carers to list tasks they need help with, to take some of the pressure off themselves.

4. Talk about it

When someone is critically ill or dying, family members often decide not to share their worries with each other. Psychologists call this protective buffering. People do it to try to protect their family and friends from worrying more.

Although it is well-intended, protective buffering can make people feel less close. It’s OK to share worries with each other. Being able to talk about feelings means being able to deal together with the difficult things like pain or fear.

Talk about your anxieties.

Using the “d” words (death and dying) can be difficult, and is an outright taboo in many cultures. Find language that suits you: be direct (death), or use metaphors (pass away) or less direct phrases (getting sicker) so that you can talk about worries together.

5. It’s OK to think about the future

It’s hard to balance feeling positive and feeling sad about the person approaching the end of their life. Many family members and carers say they feel guilty for thinking about the future or making plans for after the person has died.

But research in bereavement has shown it’s normal and healthy to move between focusing on the here and now, and on the life after the caring role ends. This might be reassuring if you’re the kind of person who doesn’t always want to face emotions head on – distracting yourself by thinking about the future is actually a natural and healthy thing to do.

Complete Article HERE!

A Dress Rehearsal for Death

We had started down the path of honoring our mother’s wish to have a good death until a hospice nurse figured out that she wasn’t really dying.

Monona Yin, right, with her mother, Fay Hoh Yin, and brother, Duncan Yin.

By Monona A. Yin

Three years ago, my family and I had the experience of going through a full “dress rehearsal” for my mother’s demise. At 83, she had become alarmingly weak from stage IV lymphoma and atrial fibrillation, and asked me and my brother to come home to Delaware for her next oncologist visit.

Mom had already undergone chemotherapy and cardioversion, so we knew there were few treatment options left. Still, we were utterly unprepared when the doctor said, “She probably has less than six months,” and recommended that she begin hospice care.

Widowed at just 37 with two small children, Mom has trained herself to face challenges without flinching. She is that rare Chinese elder who isn’t superstitious about mentioning or planning for her own death.

True to form, when we got home from the oncologist’s office, Mom sat us both down at the kitchen table to discuss her end-of-life wishes. She had witnessed two horrible lingering deaths up close — her mother’s and a longtime friend’s. What she feared most was pointless suffering and the loss of control over her own life. She wanted us to understand that, if she had little hope of recovery, she’d rather go quickly than fall apart slowly and painfully.

My brother, at the other extreme, wanted Mom to pursue every medical option, no matter how long the odds. He believed that doctors were fallible, there was always another treatment out there, and life was worth clinging to. And he couldn’t bear the thought of living without her.

Then there was me, torn between them. I had spent hours listening to Mom’s fears and understood them. A decade earlier, my mother-in-law had died with a feeding tube in her side while her oncologist suggested more surgery — after six months of wasting away from metastatic cancer. It would have been infinitely kinder to allow her to die peacefully in her own bed.

We had given my paternal grandmother just such a “good death.” We sat by her bed and told family stories as she slipped into unconsciousness. We turned away from the outside world and drew close to one another. All was quiet and time seemed to stop. Finally, we held her as she took her last breaths, letting her know how much we loved her but also letting her go. I remember that week as a thing of rare beauty. It taught me that dying well can be a balm and a blessing to all involved.

Recognizing the enormous gulf between those two scenarios, I supported Mom’s right to die on her own terms. Like my brother, I desperately wanted more time with my mother. Despite her failing body, Mom’s mind remained sharp. In recent years, our occasional mother-daughter tensions had subsided, leaving a much warmer and less complicated companionship.

After an emotional week of debate, we all agreed to bring Mom to New York for a second — and final — opinion from the world-class doctors at Memorial Sloan Kettering. If they too determined that nothing more could be done, we would accept the inevitable.

At Sloan Kettering, Mom went through the scans without incident but afterward her blood pressure dropped dangerously low and she was admitted as an inpatient.

By the next night, Mom could hardly breathe at all. It was agonizing to watch her gasping for air. She was terrified of suffocating and on the verge of panic. Finally, she pulled me close to say, “Tell them to stop everything.”

I had promised to honor her wishes, so I found a doctor and activated her D.N.R. In a few minutes, my husband, Steve, and our 14-year-old daughter, Maya, arrived and Mom couldn’t hold back her sobs. “I’m so sorry I won’t see you grow up! I’m sorry I won’t see you graduate or get married!”

We had all been coming to terms with Mom’s mortality for months but the shock and pain were still overwhelming.

Then something that seemed miraculous happened. A hospice nurse, Tracy Kahn, arrived and went in to check on Mom. She came back to tell us that she didn’t think Mom was going to die that night, the next night, or maybe for weeks.

Based on years of observing hospice patients, Tracy did not believe Mom was dying of cancer right then.

Instead, without our realizing it, her heart had been severely weakened by the cardioversion, which required high doses of a toxic drug. Almost two liters of fluid had accumulated in the lining of her right lung.

We immediately reversed the D.N.R. but it would be another 10 days before Mom grew strong enough to have the fluid drained. Over the next month, the hospital’s lymphoma, cardiology and pulmonary teams worked together to bring Mom back from the brink. They administered steroids, gave her blood transfusions, stabilized her immune system, optimized her diuretic and treated her infections.

Mom transferred to a rehabilitation center for another month, then came to live with me in Brooklyn. With our newfound sense of “now or never,” Mom and I fulfilled one of her longtime dreams. We edited and self-published her memoirs, which she’d been writing for years, and she’s enjoyed positive reviews from friends and strangers alike.

Today, Mom still wrestles with neuropathy, shortness of breath, and sometimes crushing fatigue — but she is very much alive. Even more amazing, she has been living on her own for the past two years.

We’ve had time to reflect upon our decisions, how we influenced one another, and what we’d do differently. My central insight is that it took all three of us to steer clear of the twin shoals of dying too soon and dying too late. We made better decisions because we listened to one another and weighed all the conflicting information. In hindsight, my mother acknowledges that she wanted to “pull the plug” too soon because she became overwhelmed by fear.

No one thinks clearly in the grip of panic. That’s why it’s so important to start talking long before the end. Not merely about what constitutes a good death but, more important, what makes even a diminished life worth living. As Atul Gawande writes in “Being Mortal,” “Our ultimate goal, after all, is not a good death but a good life to the very end.”

The end-of-life conversation is equally important to both sides — the dying person and the survivors. One of my mother’s greatest comforts is knowing that her children understand her wishes and will honor them. We proved that during the dress rehearsal.

Only recently have Mom and I realized how much it cost me to be her health care proxy, rather than a grieving daughter who wanted to do anything to save her mother. I’m still going to be torn between those two roles “the next time” but simply being aware of that inner conflict helps mitigate it. And Mom’s future decisions will be informed by all the joy she would have missed had she died that night in late 2015.

Complete Article HERE!