Hospice nurse Renee Beccue helps ease patients’ last days

Hospice care provides a team of physicians, nurses and other professionals to help manage the spiritual and emotional aspects of end-of-life care.

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Renee Beccue

Renee Beccue helps ease the process of dying.

She is an on-call registered nurse with Lower Cape Fear Hospice in Wilmington. Beccue, originally from Buffalo, N.Y., had primarily worked in intensive care units with burn patients.

She had accompanied doctors when they announced deaths of patients to their families and saw that this experience could allow her to transition into hospice nursing.

“Hospice and palliative care is a growing field,” said Beccue.

Part of what hospice care provides, is in-home equipment for patients, such as hospital beds, so they can spend their last days in the comfort of their own home. There is also a team of physicians, nurses and other professionals to help manage the spiritual and emotional aspects of end-of-life care.

And while hospice doesn’t provide in-home, around-the-clock medical care, it does have providers on call to help manage medical needs.

That’s where Beccue comes in.

Beccue doesn’t have a fixed caseload of patients, but she receives calls at night when hospice patients are in need of medical care that the family or caregiver feels is outside their capability. Beccue travels to a few counties for on-call needs, including Onslow and Pender as well as New Hanover.

The calls she receives can be anything from discussing fall prevention to pronouncement of death. Part of the medical care received in home is to help the patient remain in the home with fewer trips to the hospital.

“We try to prevent readmission to the hospital,” Beccue said.

Her care as a hospice nurse is twofold, therapeutic listening and education. Education consists of teaching the family or caregivers the basics of caring for a sick person who will continue to decline. Beccue calls this the “palliative care mindset, not curative.”

She teaches the family to change the bed and bathe the patient while he is still in the bed. Beccue says the care needs of hospice patients are constantly changing because they continue to get sicker. She also teaches the family what they can expect to see from the patient depending upon his disease.

Beccue also helps patients understand what they are experiencing. She consoles them and emphasizes the importance of “judgment-free” care as a hospice provider. Beccue realizes that many people are not familiar with the medical terms being used and she sincerely tells families and patients to call her with any questions.

Beccue primarily tends to the patients’ medical needs, but in the process of dying, people often work through a life review. Many patients do not truly grasp their prognosis for a variety of reasons until Beccue arrives at their home. She sometimes helps patients face the truth that she has been assigned to them because they have a prognosis of six months or less left to live.

“That’s when they cry,” Beccue said.

She tries to be the voice of reason and help them to understand that the feelings they are experiencing are normal. She can assist with adjusting medication when anxiety is overwhelming and to help mitigate physical pain.

Beccue says it’s important to allow patients to feel. “You can’t make a stage 4 diagnosis nice,” Beccue said.

She has seen patients move through bitterness, anger and unresolved issues and hospice does provide social workers to help counsel the patient through that process.

While death is frightening for many people, Beccue sees it as a part of living. And death isn’t all scary and sad. Many times she turns on music for patients, helps them sit by their favorite window and watch the birds they’ve enjoyed their whole lives. Also, the presence of beloved pets is important to comforting patients.

Some patients want to sit and look at the garden they worked in for years. Beccue says one patient asked to sit by the window and watch the golf course every day.

After years of being with hospice patients Beccue has learned a few tips about working with the dying. She recommends being upfront and honest about prognosis, allowing honest feelings about that prognosis and ultimately finding peace and joy in death, which is the ultimate rite of passage for all of us.

Complete Article HERE!

Dying: A Memoir by Cory Taylor review – facing up to ‘the great unmentionable’

An inquiry into western society’s dysfunctional relationship with mortality, and a luminous account of one writer’s search for a good death of her own

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Cory Taylor: ‘I had stumbled out of a land of make-believe into the realm of the real.’

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Most of us won’t get any say in how or when we die. But even knowing that, the question of what makes a good death feels important, even urgent. What is the best that we can realistically hope for, at the end? If you subscribe to an organised religion, you might focus on living virtuously in the hope of a posthumous reward. The rest of us need to know how to go about dying with some dignity and grace, amid the grubby imperfection of the real world. The Australian writer Cory Taylor managed it, and she has left us her wisdom and experience in this book, which is part memoir, part critical examination of western society’s dysfunctional relationship with mortality.

Taylor was 60 when she was told that what had started off as a melanoma was now incurable cancer. She had already witnessed the reality of “dying badly”: both her parents died in nursing homes after long and humiliating descents into dementia. The last time Taylor saw her mother, she watched as a nurse changed her nappy. “The look in my mother’s eyes as she turned and saw me,” she writes, “reminded me of an animal in unspeakable torment.” Taylor’s one comforting thought when she received her own terminal diagnosis was that she wouldn’t have to go like that: she had the time, and the mental capacity, to find her way towards a better death.

En route, she became something of an ambassador for the dying. When she first found herself in a ward of terminally ill people, it was as if she “had stumbled out of a land of make-believe into the realm of the real”. Death, she realised, was the great unmentionable; a “monstrous silence” that left those facing it lonelier then ever. There was very little help on offer to a non-religious person who wanted to die well. Why, she found herself wondering, do doctors avoid talking about death with their patients? Why is there so much funding for hugely expensive cancer treatments, even when they are ineffective, and so little for research into palliative care and support? And why have we allowed the debate about assisted dying to be dominated by religious groups?

Taylor was tempted by assisted dying. After several almost comically unhelpful interactions with medical professionals (her family doctor, referring her for counselling, wouldn’t describe her problem as “dying” but rather as “adjustment disorder”), she joined Dignitas and Exit International. She even got as far as ordering a euthanasia drug from China. But though the knowledge that she could end it herself was important to her, she couldn’t actually do it. In the absence of a supportive legal system, she would have had to take the drug alone, and she worried about the impact on her loved ones and the people who found her. She didn’t want the word “suicide”, with its connotations of mental turmoil and despair, on her death certificate.

“It surprises me that I have any qualms at all,” she writes of that decision, “since I have never thought of myself as a person of particularly high moral standards.” Along with the precision of her writing, it is Taylor’s lack of self-righteousness that lends this book its very special quality. She doesn’t embark on a “spiritual journey”, set herself up as any kind of guru, or even offer answers as such. There is no phoney narrative of redemption – indeed, much of the narrative is devoted to exploring rifts in her family which remained irreconcilable to the end. There was a depressed grandmother, and a property dispute in her mother’s generation; then her mother and father divorced after many miserable years in which he dragged his family around the world on a series of wild goose chases. Taylor was estranged from her father when he died, and she wasn’t on particularly good terms with her siblings. “A different family might have managed to put all this history behind them,” she writes; hers did not.

In the absence of happiness ever after, we are bound to hope for some sense of resolution. Taylor, for whom writing was an obsession since childhood, focuses on remembering the experiences that shaped her character, and finding the right words to describe them. She is sparing about what she includes, but each scene has a luminous quality, a little like her description of the light in Fiji, where she lived briefly as a child: “so pure that it infused every object with an extra intensity, so that a flower was not just red, or a blade of grass just green.” We see the moment in which she first recognised desire (in the eyes of her mother, meeting a handsome Texan), and her first intimation of mortality, watching a kookaburra swoop down from a branch to kill a skink. We see her going to buy her Fijian school uniform, “pink, mint-green … open-weave cotton with its delicious sugary smell”.

She seems to say that our lives, in all their glorious messiness, are their own reward. “The accident of birth is just that. And so is everything that happens afterwards, or so it seems to me.”

Taylor died in July, shortly after this book was published in Australia, and there is no end note to tell us whether her desire for a good death was rewarded. Naturally, I googled it: she died peacefully, surrounded by her family. Somehow I knew that would have been the case. But then again, perhaps she just got lucky.

Complete Article HERE!

Serving Veterans at the End of Life

We Honor Veterans: Serving Veterans at the End of Life

Over 4,300 hospice organizations and community partners provide Veteran-centered care to our nation’s heroes.

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As the nation prepares to celebrate our nation’s Veterans this Veterans Day, the National Hospice and Palliative Care Organization and the We Honor Veterans program would like to thank those who served and the over 4,300 organizations across the nation, committed to providing Veterans with the care and resources they deserve when dealing with a serious or life-limiting illness. We Honor Veterans partners address both physical and emotional needs, including the psychological toll of war and how it impacts the end-of-life journey. 

A new video released by the We Honor Veterans program features William, a Veteran of the US Navy and a volunteer with the Veteran-to-Veteran volunteer program at Sangre de Cristo Hospice and Palliative Care in Boulder, Colorado.  The Veteran-to-Veteran volunteer program, a We Honor Veterans initiative, pairs veteran patients with volunteers who have also served their country and share a unique and honorable bond.  “Veterans will talk more with a Veteran than they will to most everybody, except a spouse maybe,” William states in the video.

NHPCO, in collaboration with the Department of Veterans Affairs, created the We Honor Veterans program to empower hospice and other non-hospice community partners across America to meet the unique needs of seriously ill Veterans and their families.  Partners engage in activities including utilizing a military history checklist at admission, pinning ceremonies and certificate presentations, as well as outreach to other community organizations.  

“The We Honor Veterans program has helped healthcare professionals and volunteers understand and serve Veterans at the end of life for over five years now,” said J. Donald Schumacher, NHPCO president and CEO. “We continue to add more partners to the program each year –a testament of the overwhelming commitment to serve our nation’s heroes with the dignity they deserve.”  

There are four levels of distinction that program partners can earn based on their involvement with Veteran education and interaction with the Veterans and family members they are caring for. The goal of these levels is to ensure the very best care is being provided to those who have served our nation. 

As we celebrate our nation’s heroes this Veterans Day – and every day of the year – we must not forget that it is never too late to give them a hero’s welcome home.

Learn more at WeHonorVeterans.org.    

 

Complete Article HERE!

Aid in dying is about control more than pain, research shows

Supporters of “death with dignity” have succeeded in legalizing medical aid-in-dying in five states by convincing voters, lawmakers and courts that terminally ill patients have the right to die without suffering intractable pain in their final days or weeks.

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When Gov. Jerry Brown signed California’s law in 2015, he said: “I do not know what I would do if I were dying in prolonged and excruciating pain” and that it would be a “comfort to consider the options afforded by this bill.”

Yet the latest research shows that terminally ill patients who seek out aid-in-dying aren’t primarily concerned about pain. Those who’ve actually used these laws thus far have been far more concerned about controlling the way they exit the world than controlling pain.

The research suggests that patients’ motivations are more complicated than they’re often portrayed and could affect or shape how people vote on the issue in other cities and states.

Colorado voters will decide on a ballot initiative to legalize physician aid-in-dying in November. The city council in Washington, D.C., voted to legalize the practice this month, though a final vote must still be held.

“It’s almost never about pain,” said Lonny Shavelson, a Berkeley, Calif., physician who specializes in the care of the terminally ill and who began writing prescriptions for lethal doses of medication in June, when California’s law took effect. “It’s about dignity and control.”

Pain ranks near the bottom of a list of patients’ concerns in Oregon (PDF) and Washington (PDF), the first two states to legalize physician-assisted dying, which provide the most complete details about people’s motivations. Only 25 percent of the 991 Oregon patients who died after taking lethal prescriptions from 1998 to 2015 were concerned about pain or had inadequate pain control, according to reports filed with the state by their doctors. In Washington, 36 percent of 917 who died were concerned about pain.

In contrast, at least 90 percent of patients in both states were motivated by a loss of autonomy, state records show. Forty-one percent of patients in Oregon and 53 percent in Washington said they feared burdening the people they loved. Montana, Vermont and California also permit aid-in-dying, but haven’t released detailed information about patients’ motivations.

Seeking Control

Compassion & Choices, an advocacy group that supports aid-in-dying, focuses heavily on the need to relieve dying patients of pain.

One of the group’s new ads promotes the District of Columbia’s Death With Dignity Act as giving “a dying person the option to avoid the worst pain and suffering at the end of life.” The widower of Brittany Maynard, a 29-year-old California woman who became the best-known advocate for the right to die, has spoken publicly in support of the legislation. Maynard, who had an aggressive brain tumor, moved to Oregon in 2014 in order to use that state’s aid-in-dying law. She died that year after using a lethal prescription.

“The dying process is what Brittany feared,” said her husband, Dan Diaz. “She was afraid that her final few days on this green earth would be ones where she was tortured by the tumor.”

Mary Klein, a 68-year-old resident of the District who is fighting advanced ovarian cancer, said she wants choices at the end of her life.

“I want to have the option to control my own body and control my own life,” said Klein, a retired journalist and artist who appears in a video supporting legislation to legalize aid-in-dying in the city, created by Compassion & Choices.

Although Klein says she may also enroll in hospice care, which focuses on the needs of people with six months or less to live, she wants to have an alternative if the services don’t meet her needs.

“The dominant reasons for wanting euthanasia or assisted suicide are psychological and involve control factors,” said Ezekiel Emanuel, chair of medical ethics and health policy at the University of Pennsylvania. He noted that most of those who’ve used aid-in-dying laws are white, well-insured and college educated. “These are people who are used to controlling every aspect of their lives, and they want to control this aspect of their lives.”

A study of 56 Oregon patients interested in physician aid-in-dying reached similar conclusions. Although patients were concerned about the risk of future pain, they ranked “current pain” as unimportant, according to the 2009 study in Archives of Internal Medicine (now known as JAMA Internal Medicine). Patients told researchers they were primarily motivated by a desire to “control the circumstances of death and die at home,” as well as a loss of independence, poor quality of life and their inability to care for themselves.

The patients interviewed “look forward to this period in their terminal illness, this time in which they will be not in control, when they will be dependent on others, when they will have a bunch of physical symptoms that will undermine their quality of life, and they want to avoid that,” said Linda Ganzini, a professor of psychiatry and medicine at Oregon Health & Science University.

Critics of aid-in-dying laws have for years warned that they could set the country on a “slippery slope,” in which lethal prescriptions are dispensed not just to the terminally ill, but to anyone with a disease that harms their quality of life. Those fears haven’t come to pass. But physician Ira Byock, who specializes in palliative care, said aid-in-dying laws are creating a slope of another kind. Instead of helping only terminally ill patients in physical pain, they’re being used by patients in psychological distress.

“It’s a bait and switch,” said Byock, executive director and chief medical officer for the Institute for Human Caring of Providence Health and Services, based in Torrance, Calif. “We’re actually helping people hasten their deaths because of existential suffering. That’s chilling to me.”

Although right-to-die campaigns suggest that excruciating pain is often unavoidable, Byock said that “we can relieve the suffering of almost everyone that we care for if we have the time to prepare.”

Hospice staff are on call 24 hours a day to help patients in pain, Byock said. Palliative care and hospice teams also can train family caregivers how to administer emergency pain medications that take effect before nurses can arrive.

Hospice may have alleviated some patients’ concerns, said physician Thomas Smith, director of palliative medicine at Johns Hopkins Medicine in Baltimore. Just 64 percent of Oregon patients and 82 percent of Washington patients last year actually used the lethal medications they were prescribed. Others died without taking them.

“Many people who have the prescriptions don’t use them,” Smith said. “That suggests to me that some people find meaning and purpose and adequate symptom control, not just that they are too weak to take the pills.”

Many Kinds Of Suffering

Barbara Coombs Lee, president of Compassion & Choices, said it’s difficult for people to predict how they will feel as they face a deadly illness. While a healthy person might not imagine being able to tolerate physical disability, people facing the prospect of an early death are often willing to accept harsh treatments or a reduced quality of life in exchange for more time.

That change in perspective could help explain why some of those who advocate for the right to die, including those who obtain lethal prescriptions, never actually choose to hasten their death, Coombs Lee said. But she said that having the prescription on hand can ease patients’ anxiety and give them peace of mind, because they can control the timing and method of death.

Coombs Lee also notes that people can suffer in many ways beyond physical pain. Maynard’s brain tumor caused her to suffer frequent seizures, for example. Coombs Lee also described the case of a dying woman who took a lethal prescription after she began leaking fecal matter, which prevented her from ever feeling clean.

Coombs Lee quotes the woman, Penny Schleuter, in her book, “Compassion in Dying: Stories of Dignity and Choice.” Schleuter said the pain from her cancer could be controlled. But, she added, “I like doing things for myself, and the idea of having somebody take care of me like I am a little 2-month-old baby is just absolutely repulsive. It’s more painful than any of the pain from the cancer.”

Coombs Lee said, “everyone who is terminally ill has some kind of nightmare that would be worse than death to them. They want to achieve sufficient control to avoid that nightmare for their family.”

Dan Diaz said people shouldn’t underestimate how devastating it can be to lose one’s autonomy.

“If I find myself in a situation where I can’t go to the bathroom on my own, where someone has to change my diapers, where I can’t feed myself, where I can’t care for the people around me, where other people have to move me around to keep me from having bed sores, I would then submit, is that really living?” Diaz asked.

Some people who pursue physician-assisted death “don’t want to be in a hospital, don’t want to be connected to tubes,” Coombs Lee said. “They say, ‘I want to be at home with those I love. I don’t want to be delirious or unconscious at the end of life.’ Those are all things that play into their fears about what their disease might descend into.”

Complete Article HERE!

First-hand experience in tough end-of-life choices

by Sandy Bauers

Donna Kaufman (left) and Monica Bhargava in "Extremis," a documentary on end-of-life care.
Donna Kaufman (left) and Monica Bhargava in “Extremis,” a documentary on end-of-life care.

[T]oo often, we put off the discussion. It’s too uncomfortable.

meredith-mackenzieThen, suddenly, a parent or spouse is in the emergency room, and the doctors need to know: The outlook is bleak. How aggressive should they be in their treatment? What would your loved one want?

In September, Netflix released a documentary, Extremis, that aimed to bring the issue to a wide audience.

It struck a chord with Meredith MacKenzie, an assistant professor at the Villanova University College of Nursing, who specializes in end-of-life health-care issue. She recently spoke to us about it.

You watched the film. Was it good?
It was a good representation of just what these conversations look like in the intensive-care unit, or in a hospital setting in general.

I think most people think they are either going to be walking down the street one day and have a massive heart attack and keel over and die, or they are going to go to sleep one night and never wake up. Here’s the problem with that: Especially among older Americans, a very, very small number are going to die suddenly. Most are going to die in a longer, more drawn out process. You’re going to get sick, but it won’t be clearly obvious that you’re going to die right away. You’ll have this gradual decline. Over half of Americans will die in the hospital setting. Among those 65 and older, more than a fifth will die in the ICU.

But ICUs and hospitals in general are not good places for decision making. They are really crowded, really noisy. Alarms are going off. Machines are beeping. Carts are being wheeled by in the hallway. You’ve got nurses and doctors coming in and out. People need to start thinking about this before getting to the hospital, before the ICU.

The film showed how everyone struggles with this. One physician said, “Your mother is unlikely to wake up. Even if she does wake up, it is not going to be a great quality of life.” Those conversations are hard. They’re hard for families. They’re hard for doctors. They’re hard for nurses. And they’re hard for patients.

Let’s talk about the families.
As the film was closing, we heard the endings of the patient. But we never heard the ending for the loved ones, the family. My research is focused on family caregivers because they are the survivors of end-of-life care. How end-of-life care went has profound effects for a family. The likelihood of depression, suicide, guilt over what happened, it all hinges on what happened those last few weeks or days of life.

Family members in the ICU are terrified they are going to make the wrong decision. They have to keep living and think about the decisions they made, in some cases agonize over the decisions they made. Sometimes, they opt to do everything because they are afraid they are going to have to live with “Did I kill my mom? Would a miracle have happened?” Or, on the flip side, I’ve had family members who have done everything and then say, “I feel like at the end that we were torturing her.” That is a lot to live with.

What about your own journey through this?
I started out in the ER. I did not want to research end-of-life. My job was to save people’s lives. But I really struggled with seeing patients for whom we went to extreme measures to “save their lives.” I will never forget my first code in the ER. The patient was brought in by ambulance. We worked the code for 45 minutes and finally got a heartbeat back. And we were all celebrating. But I remember having this sinking feeling: He had been unconscious for so long. He was in the ICU for six days and ended up dying without ever regaining consciousness. I remember thinking: Did we do the right thing? He had tubes down his throat, multiple lines in his veins, a catheter, a feeding tube. He was on a ventilator. We had also done chest compression, so his ribs were broken, his chest was bruised, his face was bruised. I don’t know that we did the right thing.

Now, I work with a lot of older adults, many with heart failure, which is a really common diagnosis. One in five will die in a year. I start the conversation by asking them, “What is the most important thing in life? How do you spend your day? If you could not do that, would life still be worth it to you?”

I had one older gentleman who spent most of his time sitting at the kitchen table, drinking tea, chatting with his wife, seeing children and grandchildren or neighbors. This was very important to him. I said to him, “You are going to get sicker. I want to talk about at what point might you say you don’t want to go to the hospital anymore?” He said, “I don’t know that I do. I hate the hospital. I never get sleep. They limit visits.” So I said we could talk about other alternatives.

He lived a good three years, a little longer. And he passed away with hospice at home. In his last six months, he had a couple episodes that we managed, symptom-wise. He ended up with, as far as deaths go, a pretty good death. He was able to talk with family and hang out at the kitchen table up to the end.

So, more people should have advance directives and living wills?
For the last 20 years, we have been on a major kick to get people to complete advance directives. We have done a semi-good job. Among Americans 65 and older, about 45 percent have completed advance directives. That’s the good news.

But there have been a couple interesting studies showing that even among people who have completed advance directives, if you ask them if they have shared it with their primary care provider? No. Have you talked about it with your family? Well, no. There is a big difference between having that piece of paper and anyone else knowing about it.

The second challenge is that most advance directives, including the Pennsylvania official form, have wording that says “if you are in a state of permanent unconsciousness . . .” Here’s the thing: When does your health-care provider know you’re in a permanent unconscious state? Families say to me, “Is our mom ever going to wake up?” I can give them some percentages. Can I ever say with absolute certainty this person is never going to wake up? Until they’re dead, that’s a tough call.

This has all been rather grim. Any encouraging words?
It is true that over half of Americans die in the hospital. But there’s the other almost half who die at home, who die in an assisted-living facility. I think what people need to know is that it is possible to have a meaningful, peaceful, symptom-controlled death outside the hospital. It is possible to give yourself the time you need to say the things you need to say and to have the experience you might want to have. For patients who opt for hospice, they actually live longer than patients who decide to have aggressive care. It’s one of the odder things of life.

It’s not about letting someone die. It’s about acknowledging that death is inevitable. No one can cheat death forever, but we can have some say in how it happens.

One of the most important things is, talk to your loved ones. Talk about what is meaningful in your life. Talk about what you might want, what you might not want. Watch that film and think about, if I was in the ICU, would I want a breathing tube? If you have a chronic illness, at what point would you say, “I might not want to pursue aggressive care”?

It’s hard to think about this when you’re healthy. But that is the time to do it. No matter how uncomfortable talking about dying is, dying without talking about it is more uncomfortable. Think about it as a gift you give to people who have to make those decisions.

Complete Article HERE!

‘Just say death!’ Plays teach healthcare workers about end-of-life care

Dying is taboo among health and care professionals who sometimes prioritise medical initiatives over individuals and families

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Don’t Leave Me Now, a play about early onset dementia, was performed at St Gemma’s hospice in Leeds to an audience of healthcare professionals.

[S]eth Goodburn seemed fit and well until two weeks before he was diagnosed with pancreatic cancer. He died just 33 days after diagnosis, spending much of that short time in hospital. In the emotional whirlwind of coping with the poor prognosis his wife, Lesley, felt their hopes for Seth’s end-of-life care were sidelined by medical professionals trying to do their job.

“The NHS focuses on the medicine and trying to fix people even when that’s not possible,” she says. “A lot of the conversations and decisions that we might have made were overshadowed by dealing with what was the next medical treatment and intervention.”

There is an ongoing conversation in the medical profession about how to care for terminally ill patients, given that the profession’s instinct is to preserve life. The issue is just one of many being address by Brian Daniels, a playwright commissioned by the National Council for Palliative Care (NCPC) to tell stories such as Goodburn’s through plays, and help educate healthcare professionals about patients and families’ experiences of end-of-life care.

Homeward Bound, a play based on a series of letters Lesley Goodburn wrote, in the months after her husband’s death, to medical professionals involved in his care, launched NCPC’s national conference this year to an audience of 300 healthcare workers.

In addition, Daniels’ plays on early onset dementia and palliative care for those with disabilities, have been performed in hospitals, hospices, care homes and to general audiences across the country. Daniels says: “[They] take people out of their professional role for a minute to look at the family and human side of the people they’re dealing with.”

For Goodburn, that human aspect is key. She could not fault the professionalism of those involved in caring for her husband, but says poor communication could leave the couple feeling worse. “There were just so many things where people weren’t cruel or unkind or deliberately unthinking, but just didn’t really think about what it was like to be me and Seth. He went from being well and living a normal life to suddenly being told that he was dying.” She says, for example, a physiotherapist asked Seth to march on the spot as part of an assessment to see if he was able to go home, as he had previously wished, seemingly unaware that his condition had deteriorated and he was dying.

An actor in Don’t Leave Me Now.
An actor in Don’t Leave Me Now.

Claire Henry, chief executive of the NCPC, says plays such as Homeward Bound are designed to encourage medical professionals to reflect on the people going through this traumatic process. “We obviously work very closely with people who have experience and they tell us their stories. Some are good, some not so good. Healthcare professionals don’t go to work to do a bad job, but sometimes they don’t think of things that affect people in a broader sense.”

What impact does a play have that a lecture, for instance, cannot? Don’t Leave Me Now, another play by Daniels, about early onset dementia, was performed at St Gemma’s hospice in Leeds to an audience including nurses, housekeeping staff and workers from other local hospices. Dr Mike Stockton, its director of medicine and consultant in palliative medicine, says the play enabled them to see some of families’ and patients’ challenges through a different lens. “It’s sometimes hard to have a full understanding … of what people may be going through and the reasons behind their actions or the emotional challenges, adjustments or the resilience that people need.”

Lynn Cawley agrees. There was barely a dry eye at a performance at Morley Arts Festival in October of Bounce Back Boy, the powerful dramatisation of her adopted son, Josh’s, story. Josh was severely disabled following a serious head injury as a baby, and later adopted by Cawley. Despite pioneering medical treatment throughout Josh’s life, Cawley says he was denied admission as an inpatient to a local hospice because his needs were too complex, and died a difficult death at home. She is fighting to end what she describes as end of life discrimination against those with disabilities.

Cawley thinks a play is an effective way of communicating that message, and for getting people to think about palliative care more broadly. She says: “When it’s someone’s real life story, people put themselves in it [and] they might think of a patient that they know. We hope that it will change policy but also people’s attitudes.”

For Stockton, working in a hospice, the wider issue of how treatment is balanced with patient comfort is a daily consideration. He says the two can often be done together: “It is about having early, thorough, open, honest, transparent conversations with people about what they want.”

For Cawley, as a carer and mother who went through the palliative process, those open conversations about dying are key. “We even find it hard to say the word,” she says. “When we’re watching Casualty on a Saturday night and they’re trying to tell a relative that somebody is dying, but they won’t say the word dying or death, we’re just like – say death!”

Complete Article HERE!

Why I Decided To Become A “Death Doula” At 33

By Christine Colb

[E]vi Numen, 33, of Philadelphia, could be considered a little death-obsessed. She’s the curator and founder of Thanatography.com, a site that showcases the work of visual artists exploring the themes of death, grief, and loss. Previously, she worked at the Mütter Museum, known for its collection of medical oddities and pathological specimens, such as presidential tumours, murderers’ brains, and books bound in human flesh. She has also recently added a line to her résumé — she’s a “death doula” in training — one of the first in the United States.

Evi Numen
Evi Numen

Numen can be excused for being a little morbid. When she was 20, she survived a car accident that killed her partner on impact. Earlier that night, he had told her he was going to propose. While in the hospital recovering from her injuries and raw with grief, she kept asking if she could see his body in the morgue. “I needed to confront his death to truly believe it,” Numen says. “My doctors thought I couldn’t take the sight of him, dead and broken, but to this day I believe it would have helped. Seeing him in his coffin during the funeral a week later felt staged and artificial.”

Last April, when her late partner’s father was in rapid decline with cancer, Numen rushed to his side. “I held his hand, listened, and talked to him when he could, and also allowed his loved ones to take a break from the bedside. What I couldn’t do for my partner, I tried to do for his father.”

A large part of the assistance Numen provided was for his family. “I had to remind them it was okay to take care of their own needs. I couldn’t “fix” anything, but I could bring food so it was there when people needed it, or stay by the bedside and encourage family members to go for a brief walk to get some fresh air.”

Caregivers [of the dying] often need to be ‘given permission’ to care for themselves properly.

 
After her partner’s father died, Numen knew she had found her new calling. She did some research and found the International End of Life Doula Association (INELDA). “Immediately, I knew this was the right next step,” says Numen. Cofounded by former hospital social worker Henry Fersko-Weiss in February 2015, INELDA trains people to provide emotional support for the dying — and their family members. Ferko-Weiss was inspired by the concept of doulas who support a mother and her partner during pregnancy and childbirth. “I kept seeing people die in ways that I thought were unfortunate or even tragic. I was trying to figure out how to change that. To me, the principles and spirit and techniques of birth doulas could be interpreted and adapted for the end of life,” says Ferko-Weiss.

A certified death doula can help not only the dying person, but will assist their loved ones throughout the entire death process, from coming to terms with mortality weeks or even months before the death to remembering and memorialising their loved one after passing.

Numen took a 22-hour training with INELDA and has logged more than 20 hours of volunteer training at two different area hospices. She’s been coached to become familiar with the physical changes the body goes through directly preceding death — and in helping comfort and counsel the dying person and their family from the point of a terminal-illness diagnosis all the way through even a year after a death. “I think many of us have the tendency to be problem-solvers and try to offer solutions to someone who is hurting, but there is no solution to dying,” Numen says. “It is easy to develop the habit of offering platitudes to such a situation, such as, ‘This too shall pass.” But that’s not actually comforting to a grief-stricken person. I know this from my own experience. Instead, I serve as an active listener, letting the other person really talk about all their conflicting emotions.”

Numen says that one of the most fascinating parts of her training was learning how to recognise when the person is “actively dying.” “Most of us know what the birthing process is like — foetal development, labor, contractions, water breaking, and such are fairly common knowledge in the Western world. Yet very few of us know anything about what it looks like to die: Your appetite decreases, your skin changes colour, breathing sounds different. There is a huge discrepancy in how we view the two ends of human life. It is easy to see how such ignorance about death can lead to avoidance and fear.”

Numan had asked the nurses at a hospice where she was volunteering to call her if they needed someone to keep vigil for an imminently dying patient, especially if their family couldn’t be there. “My objective was to be with the person who needed me the most,” she says. She was called to the bedside of an elderly man in end-stage pulmonary disease. He had no family present and was unable to communicate. She was his sole companion in his final moments. She knew from her training that he only had a few hours of life remaining.

Over the course of seven hours, Numen played Clint Mansell, Erik Satie, Rachmaninoff, and Chopin on her iPad as she sat by the man’s bedside and watched him breathe. “His breath cycles grew further and further apart, but only by seconds, which to me felt like minutes as I found myself holding my breath with him,” says Numeb. “I knew he was very near. Within an hour, his breath got steady but oddly mechanical, more like a reflex than an action, and then the next inhale never came. I called the nurse and she confirmed the death. It was easier and more peaceful than I thought it would be, and yet it affected me more than I expected. I had, after all, trained for this, read about it, and kept vigil to other dying patients, but his passing was the first I had witnessed.”

Despite all her preparation, Numen was so deeply affected by the experience that she had to skip her next scheduled shift. “Being there for that man, when no one from his family was able to, affected me more than I thought it would,” she says. “I didn’t cry — I felt it wasn’t my place to, like I was just a stand-in for his family. There is a weird sense of intruding, especially when keeping vigil for complete strangers, that I have not been able to reconcile yet.” It also had a personal resonance for her. “Witnessing a death brought up the other losses in my life, and I had to honour these emotions before I could return to keeping vigil for someone else,” Numen explains.

Witnessing a death brought up the other losses in my life, and I had to honor these emotions before I could return to keeping vigil for someone else.

 
Despite her unanticipated reaction, she is even more committed to her calling of caring for the dying than she was before. “It wasn’t gross or scary, but it was certainly difficult. Every death will be different, and maybe it will get easier or less nerve-wracking, but it will not get any less worthwhile. Even if I never get to talk with the patients I attend to, knowing that I brought some small amount of comfort is enough.”

She’d also like to see more people become comfortable with ageing and the dying process. In a culture where ageism is rampant, Numen has found that learning about the end of life has actually made her less apprehensive of getting older — and the inevitable end. “Most of the patients I’ve seen close to death were peaceful and tranquil. They seemed comfortable and had this beautiful glow about them, this serenity that I didn’t expect to see. I’m still fearful of sudden death and the suffering of prolonged illness, but not of the dying itself.”

Numen also hopes that more family members will recognise that a death doula can be an option that can bring enormous comfort in someone’s final moments. “It’s about regaining control over an uncontrollable process,” she says.

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