Category: Death Education

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Health care fellows learn the tough task of discussing death and dying

Foundation’s fellowship program aims to expand number of health professionals skilled at discussing end-of-life issues with patients

By Gary Rotstein

Each Monday night for eight weeks, the group of aspiring physicians, pharmacists, social workers, medical ethicists and other future health care professionals met for three hours to talk about death — for the purpose of being better able to talk about death.

The 33 post-graduate students and other trainees spent time at a residential hospice, hospital and nursing home. They heard from palliative care doctors, geriatricians and other specialists. They talked with relatives of those who had died. They practiced end-of-life conversations with one another.

And by their last meeting this month, the participants in the Death & Dying Fellowship of the Jewish Healthcare Foundation learned how to broach a difficult topic with terminally ill patients and those individuals’ loved ones — a topic for which their formal studies typically provided minimal preparation.

“When you’re in front of a family crying their eyes out, it’s a whole different game,” said participant Tamara Means, a former medical resident who admitted that her past nervousness addressing such issues probably only made things worse for some seriously ill patients.

She and others learned during two months how, among other things, to listen better to patients and families; to look for cues that they’re ready to face up to mortality; to bring up death-related discussion in a non-judgmental way that respects different cultural values; to be able to consider emotions in addition to medical skills and technology.

The fellowship is one of a variety of Jewish Healthcare Foundation programs intended to promote a better end-of-life experience, including more personal planning and decision-making by those affected. The foundation’s officials believe the medical profession needs to do more to help patients address the potential failure of curative treatment, with too little taught about end-of-life conversations in medical school.

If existing practitioners won’t take the lead in helping seriously ill people prepare for their final stage of life, the foundation is counting on the field’s newcomers to do so. Since launching the annual Death & Dying Fellowship for that purpose five years ago, the program has drawn far more interest than officials anticipated, with all of its available slots filled again this year.

“You’re our apostles — 30 to 35 people who will go out and help hundreds of others learn how to talk about death and end-of-life,” foundation president Karen Wolk Feinstein told them April 1.

“There’s a lot more that can and should be done” in the way of core training in school, Michael Barkowski, a second-year medical resident at Allegheny General Hospital, agreed afterward while citing the confidence he gained from the fellowship program. “No matter what field we go into, we’re all going to work with patients who have chronic diseases and end-of-life illnesses.”

Some 2.7 million Americans die each year, and most die under medical supervision in a hospital or nursing home rather than in their own residence. Those who die at home have frequently been hospitalized late in life themselves.

So most individuals have interacted with medical professionals before death, but the fellowship program’s instructors say both sides often ignore end-of-life discussion, such as how much intensive treatment a patient would want if there’s minimal chance of benefit.

It’s easier to just avoid a topic that makes everyone uneasy, Robert Arnold, medical director of the UPMC Palliative and Supportive Institute, told the fellows at their final session. He noted that patients are fearful about the end of their lives and doctors lack incentives to discuss it.

“We collude not to talk about it,” he said, although palliative care specialists such as he have more time and training for that purpose.

“There’s nothing natural about this,” Dr. Arnold said while coaching his young listeners to make end-of-life care part of their professional “identity.”

They should be good listeners as to the expectations of patients and families, he said, and then offer themselves as guides to the decision-making that eventually will be required. Their knowledge, if shared properly, can assist patients in weighing the merits of more procedures versus more comfort.

Alexandria Abdalla, who is pursuing a master’s degree in bioethics from the University of Pittsburgh, said she always has had a fascination with death but knew little before the program about how to discuss it professionally. She said she has learned how to “read between the lines” of what patients are saying and acknowledge their emotions.

She put that to use recently when shadowing a geriatric oncology doctor at one of UPMC’s hospitals. Ms. Abdalla was left alone with an elderly woman temporarily after the doctor left her room. The patient mentioned her fears about her prognosis, and instead of trying to talk her out of it, Ms. Abdalla simply listened.

“Then I told her, ‘I’m sorry what you’re going through is so difficult — I wish we weren’t in this position,’” Ms. Abdalla said. “She seemed to appreciate just having someone to listen.”

Dr. Barkowski, the 29-year-old AGH resident who plans to specialize in palliative care, said he now better understands how to build relationships with patients prior to such a serious conversation. In a recent visit with a family in the hospital’s intensive care unit, he sought no quick responses when laying out the options for an elderly woman with advanced breast cancer.

“I went into it without any agenda like previously, when I might have wanted a decision within one meeting,” he said. “We talked every day for the next few days. … We were journeying together, like Dr. Arnold was saying — you’re an educated guide helping them understand the medical things happening, how severe things are, what the limits are of what we can do, learning about the patient’s values and aligning treatment with those.”

Ultimately, a decision was made to discontinue treatment — the patient had reached the point of requiring kidney dialysis on top of other issues — but it was in a manner that her family understood, accepting it as the right decision for the patient, who died within days.

“It’s all about building trust,” Dr. Barkowski said. “The listening is where everything starts, and the fellowship was able to build on that.”

The Jewish Healthcare Foundation expects to sponsor the fellowship again in early 2020 for individuals pursuing health care-related careers who are in graduate school or medical training. Application information will be made available later this year on the foundation’s website.

Complete Article ↪HERE↩!

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‘End Game’ Film Shows the Struggle in End-of-Life Decisions

The Oscar-nominated documentary also spotlights palliative and hospice care

By Deborah Quilter

In a pivotal scene of the documentary End Game, we listen in as a team of palliative care professionals discusses Mitra, a 45-year-old woman who is dying of cancer. Should they approach her about hospice? The hospital chaplain urges the group not to bring it up. She had spoken to Mitra’s mother, who told the chaplain that to Mitra, hospice means death. Dr. Steven Pantilat, a palliative care specialist, agrees with her assessment, noting: “Healthy people want to talk about how they want to die. Sick people want to live.”

This exchange in End Game (available on Netflix) captures human nature, and the delicate dilemma doctors and patients face at the end of life, under the best circumstances. Filmed in the serene hospital rooms and corridors of the University of California San Francisco Medical Center and the recently-closed Zen Hospice Project, situated in a tastefully-appointed Victorian house, we see firsthand the inner workings of hospice and palliative care.

We also see clearly how important it is to talk about these matters before we might need them.

Considering Palliative and Hospice Care

Though palliative and hospice care can greatly ease suffering, they are not easy to talk about or decide on for many patients. Some of the people in the 40-minute documentary are not ready to check out and seem to feel that accepting hospice care would mean accepting death. Their family members don’t want to let them go either.

Mitra’s husband hopes each new treatment will bring a miraculous recovery. Her mother knows her daughter will never walk again, much less recover from cancer and thinks her daughter is suffering. In one scene early in the movie, which is doubtless replicated in many hospital rooms every day, Pantilat asks Mitra’s husband and mother if they want to continue treating the cancer.

“If she were clear in her thinking and seeing herself in her bed the way she is right now, what decision would she make?” Pantilat asks. The question hovers in the air.

When Mitra’s sister flies in from Switzerland, initially there is jubilation over the reunion and we rejoice vicariously with the family. In the next scene, however, we see the sister collapsing in her mother’s arms in the hallway, weeping. Later, we see Mitra’s mother literally staggering down the hallway under the weight of her sorrow. We witness Mitra’s husband’s heart breaking, and their 8-year-old son playfully massaging his mother’s bald head.

There is joy, sorrow, love. The camera captures it all, but there is no narration. We witness the family’s struggles as they go through them in real time. This is part of the film’s power: It is easy to identify with the subjects. Viewers might feel they are losing their own family member.

The Filmmakers’ Vision: Bring Death Out of the Closet

The 40-minute film, directed by Rob Epstein and Jeffrey Friedman, was nominated for an Oscar in the category of Documentary Shorts.

The filmmakers, who won an Oscar in 1985 forThe Times of Harvey Milk, wanted to raise awareness about how palliative and hospice care can give us the right care at the right time. As Friedman explained, birth and death are universal life passages, and of those, death is the one we have the option of facing consciously.

“Most of us avoid thinking about it until it’s too late. By doing that, we set ourselves up to lose control of our life story when we’re at our most vulnerable,” Friedman says. “Couple that with medical technology so advanced that we can keep nearly everyone ‘alive’ using machines — but without taking the time to talk about what the quality of that life will be. The result is that far too many people are getting care they don’t understand and don’t want.”

“End Game is about choices we make about how we want to live, when we know our time remaining will be brief,” Epstein adds. “One of our goals in End Game was to inspire conversations — not only about facing death, but about how we want to live, right up to the end.”

End-of-Life Care Explained

According to Pantilat, author of Life after the Diagnosis: Expert Advice on Living Well with Serious Illness for Patients and Caregivers, “Palliative care focuses on improving the quality of life for people with serious illness (whatever the prognosis). It alleviates symptoms like pain, shortness of breath, fatigue and nausea. It’s also about having patients communicate preferences and values, so the care team can attend to their psychological, spiritual and emotional support when they are sick.”

In the United States, hospice is a service to provide palliative care to people, largely at home. For hospice, the eligibility criteria include a prognosis of no more than six months of life and patients and loved ones who have agreed the focus will be comfort care.  Hospitalization, generally, will be avoided.

“Most of the time, hospice is not a place, but a service, although there are facilities focused only on hospice care (as Zen Hospice Project was). All hospice is palliative care, but not all palliative care is hospice,” Pantilat explains.

Many people have the misconception that once you choose palliative care, you’re not getting any other treatment for your illness. “That’s not true at all,” Pantilat says. You could have palliative care alongside chemotherapy, bone marrow transplant and many other serious illnesses. In fact, palliative care might help you live longer.

“There’s never been a study that showed that people who receive palliative care live less long. And there are studies that show that people who receive [palliative care] for the illness live longer. It’s an unmitigated good.” Pantilat says.

Help for the Family, Too

There’s another important feature of palliative care: It also attends to a dying person’s loved ones. The palliative care team will talk to family members and offer them comfort, options and counsel.

Pantilat notes: “When people ask, ‘When should my family come?’ I always say come now. If they get better and live for another six months or year or two, no harm, no foul. It’s one more visit. But if you try to time it when they’re really sick and on death’s door, they might be too sick to have a meaningful interaction or you might miss the opportunity. Things can happen suddenly.

“We try to have these conversations in advance and understand what’s really important,” Pantilat continues. “If visiting with your sister or seeing your daughter get married is the most important thing to you, now’s the time to do it. Maybe you shouldn’t wait 10 months for a wedding, because you may not make it. Instead, could your daughter move the wedding up to next month?”

And speaking of not waiting, the doctor has a message: “If you or a loved one has a serious illness, you should have palliative care. Don’t take no for an answer. Because it will help you live better and may even help you live longer.”

Complete Article ↪HERE↩!

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Why Do 4-Year-Olds Love Talking About Death?

By Jessica Grose

When our older daughter was 4, it seemed like she was asking us about death constantly. These questions were apropos of nothing; we hadn’t had a death in the family or lost a pet. What was jarring was her matter-of-fact tone. We’d be sitting at dinner and she’d ask a barrage of questions in a completely neutral voice: “When are you going to die? Is Grandma going to die first because she’s old?” And on and on. I tried to calmly match her tone and answer her honestly, but sometimes you just want to eat your salad without contemplating your own mortality.

At the time, I was slightly worried that there was something wrong with her — at best she was a proto-goth who would be really into the Cure as a teenager; and at worst, her questions meant she had some troubling anxiety that was emerging through a fixation on death. But when I started talking to other parents, I learned that their preschoolers were also asking tons of questions about death at awkward moments.

A lot of parenting questions boil down to: Is this a thing, or is something wrong? So I decided to start an occasional series explaining why certain things seem to happen to your kid (or to your body or your relationships) as your child grows. For this edition, I asked three psychologists, two of whom have done research on children and their understanding of death, about why preschoolers ask a lot of questions about death, and how to best answer them. If you have a question for a future “Is this a thing?” newsletter, email me here.

Why do kids start asking about death in preschool?

Preschool is the age of “why” in general, said Dr. Lauren Knickerbocker, Ph.D., a child psychologist at N.Y.U. Langone’s Child Study Center. And what adults sometimes don’t realize, because we’re inured to it, is that our kids are surrounded by death all the time: Cartoon characters die, the leaves on the trees die, an ant they smushed at the playground is dead.

Because they’re already so curious about the world, they see our reactions to their questions about death — our faces may blanch — and they pick up on that and want to dig deeper.

What do they understand about death at 4?

There are four subconcepts of death that psychologists have identified, explained Dr. Sally Beville Hunter, Ph.D., a clinical assistant professor at University of Tennessee, Knoxville: nonfunctionality (your body doesn’t work anymore), universality (all living things die), irreversibility (once you die, you can’t come back to life) and inevitability (you can’t avoid death).

Though children pick up these concepts at different ages, depending on their cognitive abilities and their life experiences, at 4, the subconcept they tend to understand first is nonfunctionality, Beville Hunter said. Because it’s straightforward, many preschoolers can understand that when you’re dead, your arms and legs don’t move anymore, and your heart stops beating.

“We’re all gonna die” is something that’s a bit harder for a 4-year-old (or let’s be honest, a 37-year-old) to fully internalize. But according to Beville Hunter, many kids will understand all four subconcepts somewhere in the 7-10 age range.

How do I answer their many, many questions about death?

Do not use euphemisms. Children in the 3-6 age range have very concrete thinking, said Dr. Dunya Poltorak, a pediatric medical psychologist in private practice in Birmingham, Mich. If you say something like, “Grandpa passed away” instead of “died,” it may confuse your child. She may think, “Did they go away somewhere? Are they on a trip? Did they pass over the border into Canada? It can just potentially risk greater confusion and lack of understanding,” said Poltorak. So use the term “died,” even if it feels harsh.

Try to respond simply and clearly. Don’t brush off their questions even if they make you uncomfortable, said Poltorak. And you don’t need to get into too much detail with kids this age, said Beville Hunter. So for example, if your child asks you, “When are you going to die?” You can say, “I try to take very good care of myself and to be careful and plan to live a very long time until I’m quite old,” Poltorak suggested. If kids have follow-up questions, they will ask.

If your kids are endlessly curious about death in a nonanxious way, you can take them on a tour of a cemetery, Beville Hunter suggested. It’s something she did with her own children. “We went around and read the names on the gravestones, we did etchings, we looked at the numbers and talked about the age they were when they died,” Beville Hunter said. It opens up a space for your kids to get answers to many of their pressing questions.

If a kid is anxious about death, “I would assure them of safety, health and everything within your family dynamic, then I would try to redirect from there,” said Poltorak. Try classic distraction after addressing their questions clearly — let’s go paint! Or, why don’t we read a book? If a kid is really ruminating and you’re concerned because his anxiety is affecting his quality of life, talk to your pediatrician. Your child’s doctor may recommend a pediatric psychologist. “It’s always good to intervene young when children have anxiety,” Poltorak said.

When you have a death in the family, Knickerbocker and Poltorak both recommend that grieving children memorialize loved ones with art projects. They emphasized the concreteness of preschoolers’ thinking, so having something to work on like a scrapbook of memories of that person is helpful.

If your religious beliefs include an afterlife or resurrection like in the Easter narrative, again, try to address any questions straightforwardly. You don’t need to overexplain or answer questions that weren’t asked, said Beville Hunter. Poltorak, who is Catholic, said she talks to her children about heaven and tries to keep it light. Her father, who was very close to her children, died recently. He used to bring candy over to their house all the time, so Poltorak tells them, “Grandpa is probably up in heaven giving Jesus cavities.”

Complete Article ↪HERE↩!

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‘Soul midwife’ offers companionship to the dying in their final moments

Linda Jane McCurrach is an end-of-life doula – a non-medical, holistic companion who guides and helps people to have a gentle and tranquil death.

Linda McCurrach says it a privilege to do the job she does

By Maria Croce

Midwives are associated with helping to bring new life into the world. But there’s another type who are there at the end, when people are dying.

Linda Jane McCurrach is a “soul midwife” or end-of-life doula – a non-medical, holistic companion who guides and supports the dying to help them have a gentle and tranquil death.

She describes the people she supports as friends and says it’s about helping them have a “good” death. But she admits some people initially find it difficult to grasp the idea that there can be a positive side to something so finite.

Linda Jane added: “People don’t even want to think about having a good death because they can’t imagine dying.

“But in eastern culture, they believe that only by looking at our death can we live fully.”

She sees some parallels between conventional midwives who bring new life into the world and her role for the souls who are leaving.

cancer about 18 months ago, Linda Jane was able to be by her side.

Linda pictured as a baby with her late mum Myra McCurrach, who she was able to be with at her death

She said: “I couldn’t imagine my mum not having someone there. I thought, ‘What would it be like for someone to be on their own?’ It really struck home that I can help people going through this alone.”

Linda Jane has now launched a charity called No One Dies Alone Ayrshire.

For those who are alone, it aims to provide companions in the last 48 hours of life. It also offers respite for those with families.

Companions will offer support at home, in care homes, in hospital and hospices and will enable people to die according to their wishes.

The charity has started its work in East Ayrshire with plans to expand into the rest of the county.

Linda Jane, 48, has five children – Jordan, 23, Lewis, 22, Kai, 17, Nathan, 15 and Freya, eight – and lives near Newmilns in Ayrshire.

Having had difficult experiences and relationship break-ups, she said death puts everything else into perspective.

She added: “You have a greater sense of what’s important.”

The hardest part of her role is when people open up to her in their final days.

She said: “It can be hard to then move back into a normal life. But I surround myself with the right people who help me with that.”

She remembers the first time she sat with someone who was dying.

Linda Jane said: “I was concerned with doing everything right. It wasn’t until the end I realised it’s not really about the stuff you know and the things you can do, it’s about being there.

“Death is individual. It’s not scary. But if the person is feeling a bit scared, you can be a loving presence to help them get through.”

She said the dying want to know what’s happening to them.

Linda’s beloved mum Myra McCurrach who died from cancer 18 months ago

Linda Jane added: “People want to know the process. It’s not commonly spoken about.”

She also helps them make peace with the world.

“Ultimately, death is the major letting go in our lives,” she said. “We have to let go of everything and it starts with letting go of the past.

“Sometimes they need to get things off their chest or make amends with family members and things weighing heavily with them.

“And everybody wants to know where they’re going to go afterwards. Having a visualisation of somewhere they would like to go really helps with that, for instance a meadow full of bluebells.”

Although she’s less scared of dying herself now, Linda Jane said she wouldn’t want to leave her children yet.

She added: “I think hopefully by the time I die, I’ll be ready. I know death can be positive and beautiful.”

Complete Article ↪HERE↩!

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Review: The Art of Dying Well – A Practical Guide to a Good End of Life

Author photo Katy Butler and book cover

By Trish Rodriguez*

I have to confess that I am a Katy Butler fan. When I started the journey to become an End of Life Doula, her Knocking on Heaven’s Door was one of the first books that I read. I didn’t so much read the book as devoured it, often catching a sob in my throat as I read her deeply personal account of the horror show that became her fathers final years. I admired the courage and honesty of the parts of the book that were memoir, and the research on the current culture of American healthcare with respect to death. I agreed that our way of dying in the good ol’ USA has come to leave something to be desired.

In her newest work The Art of Dying Well – A Practical Guide to a Good End of Life, Katy picks up the narrative in a new and accessible way. She divides the process of moving toward the end into seven unique segments defined not so much by age but by ability and functionality. At the beginning of each of these chapters she has a list of statements and suggests that if many of these apply to you now, this might be where you find yourself. I found this approach fresh and, best of all, non-threatening. This might be just the way to start a conversation with a unwilling family member.

In the first segment, aptly titled Resilience, we learn that in this stage of well being we can still dramatically impact our health, longevity, and ultimately the quality of our death. By building reserves (aka altering what we eat and whether we’re active enough), finding allies in preventative medicine, and increasing our circle of friends and acquaintances, we are still in the drivers seat with regard to how things will go for us as our situation changes. This perspective gives lots of practical advice for those who may think there is plenty of time.

With each ongoing chapter comes an inevitable decline – not according to any decade of life or disease process – but according to naturally decreasing functionality. I like that she is careful to follow this definition, as people age as they darn well please, and I personally know 90 year olds who are still more capable than I am. This lets you find your home page, so to speak, without feeling like a failure or self fulfilling a prophecy to act your age. Every chapter offers practical advice; about healthcare, money, housing, and all those pesky details like advanced directives and wills. In nearly every chapter there are personal accounts of folks who managed things well, or not so well, and lots of food for thought.

There was a great deal of material that wasn’t new to me, but I work with dying  people. In my every day life, I am always shocked at how hard working, responsible people don’t bother with a will or advanced directive… because? They aren’t going to die? Or they’re not going to die tomorrow? This book may be just the ticket to get you going, or to give to that parent who is dragging their feet about preparing for anything. With a helpful glossary and pages and pages of useful references included, this will certainly be a ‘go to’ book in my personal library and in my practice.

* Special correspondent, Trish Rodriguez,  is an End of Life Doula and hospice vigil volunteer in Anacortes, WA.