The Chaplain & the Doctor: A Team to Support End of Life

This stirring documentary is a tribute to all who care for those at the end of life. And to the importance of treating the person, not just the disease.

A Hospice Nurse on Embracing the Grace of Dying

From an interview with hospice nurse Hadley Vlahos in the New York Times:

What should more people know about death?

I think they should know what they want. I’ve been in more situations than you could imagine where people just don’t know. Do they want to be in a nursing home at the end or at home? Organ donation? Do you want to be buried or cremated? The issue is a little deeper here: Someone gets diagnosed with a terminal illness, and we have a culture where you have to “fight.” That’s the terminology we use: “Fight against it.” So the family won’t say, “Do you want to be buried or cremated?” because those are not fighting words. I have had situations where someone has had terminal cancer for three years, and they die, and I say: “Do they want to be buried or cremated? Because I’ve told the funeral home I’d call.” And the family goes, “I don’t know what they wanted.” I’m like, We’ve known about this for three years! But no one wants to say: “You are going to die. What do you want us to do?” It’s against that culture of “You’re going to beat this.”

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Do these experiences feel religious to you?

No, and that was one of the most convincing things for me. It does not matter what their background is — if they believe in nothing, if they are the most religious person, if they grew up in a different country, rich or poor. They all tell me the same things. And it’s not like a dream, which is what I think a lot of people think it is. Like, Oh, I went to sleep, and I had a dream. What it is instead is this overwhelming sense of peace. People feel this peace, and they will talk to me, just like you and I are talking, and then they will also talk to their deceased loved ones. I see that over and over again: They are not confused; there’s no change in their medications. Other hospice nurses, people who have been doing this longer than me, or physicians, we all believe in this.

There is beauty and joy at the end of life, too

What people don’t understand is the beauty and joy to be found at the end of life. When I tell people I work at a hospice, they often say “that must be so hard.” But my favourite thing is hearing people’s stories, their experiences, their successes, their failures – the things that life has taught them. I love helping them share these stories with their family members. It helps the family members keep their loved one alive in their memories after he or she dies.

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Hospice workers encourage conversations about things that want to be said and heard. We create time for families to connect, laugh and cry together. Mostly, we help create a legacy of the resident that will remain with their family.

There is beauty and joy at the end of life, too

A Prison Hospice in California

“I listen to people’s regrets, their stories, their happiness, their joy. I listen to their confessions,” Murillo says.

“I befriend somebody when they’re perfectly healthy, walking around, I’ll take care of them when they’re unable to talk and eventually hold their hands when they’re taking their last breaths.”

He and his fellow inmate workers take that work seriously. When someone under their care has 72 hours left to live, they never leave his side. “No prisoner dies alone” is their motto.

Inside the prison hospice where no inmate dies alone

Hospice Workers Find Peace and Meaning

Michael Ollove writes in the Washington Post writes about hospice workers who find peace and meaning in their work.

It is hard to think of another profession with such constant exposure to dying. Yet, as intense and exhausting as hospice care is, you seldom hear any of the Western Reserve’s doctors, nurses, aides, social workers and bereavement counselors describe the job as grim, sad or dispiriting. Instead, they tend to portray the work as deeply fulfilling, gratifying and, perhaps most counterintuitively, life-affirming. And in working in the presence of imminent death, they all say they have witnessed sights that defy expectation or explanation.

“We see God working here all the time,” said Dee Metzger, 68, a hospice nurse in the Medina Inpatient Hospice Care Center southwest of Cleveland. “All the time.”

The annual turnover rate among employees at Western Reserve is a surprisingly low 12 percent, according to Judy Bartel, the organization’s chief clinical officer. To retain employees, the hospice offers them many outlets to combat burnout and what is called “compassion fatigue.”

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The hospice caregivers gauge their performance by how they usher their patients to their end. “The most we can do is provide opportunity for our patients to have the best deaths possible for them,” said Dieter, 62, medical director of Western Reserve’s David Simpson Hospice House. “While everyone else is running away from it, we in end-of-life are rushing forward, saying, ‘We know what you’re going through. We want to help.’ ”

Dealing with Death: Hospice Workers on Easing the Passing at End of Life

Providing the possibility of that wished-for death is the professional mission of all in this room, of all the 935 employees and 3,000 volunteers who work for the 40-year-old nonprofit Hospice of the Western Reserve. Each day they serve 1,200 hospice patients, most of them in hospitals, nursing homes, or their homes, and as many as 88 in one of three inpatient hospice houses in the Cleveland area, like this one off Lakeshore Boulevard.

By Medicare’s criteria, to receive hospice services, each of those patients is deemed to have six months or less to live. In most cases, they also must agree to forgo curative treatments....“It’s sacred work,” says Lisa Scotese Gallagher, one of whose jobs at Western Reserve is to provide programming to help the staff deal with the stress and emotional intensity of their jobs. “But the expectation that we can be immersed in suffering and loss and not be touched by it is unrealistic.”

...“Most of death isn’t medical, it’s spiritual and psychological,” he says. Hospice workers know they can’t erase all hurts and resentments. But often they facilitate conversations that can lead to deathbed reconciliations.

How Does Health Insurance Mesh with Hospice Care?

Can an insurance company also run hospice?

Death has always been lucrative enterprise, whether it involves mahogany caskets or teams of estate and tax lawyers. But hospice, the business of caring for those who are nearing death, has become a booming multibillion-dollar industry that is attracting more and more for-profit companies, including one of the nation’s major insurers.

That insurer, Humana, is making an unusual bet beyond the current strategy of health insurers to merge with pharmacies or buy up doctors’ practices. In teaming up with two investment firms, Humana plans to buy two hospice chains that together would create the industry’s biggest operator with hundreds of locations in dozens of states.

Humana, which specializes in offering private Medicare Advantage plans, joined forces with TPG Capital and Welsh, Carson, Anderson & Stowe, two private-equity firms, last December to take over a division of Kindred Healthcare that offers both home health and hospice care. In April, the same group said it planned to buy another large hospice outfit, Curo Health Services, owned by another investment firm, Thomas H. Lee Partners.

In short, Humana, which provides Medicare Advantage plans to about 3 and a half million people for their medical needs, also wants to dominate care for those at the end stages of life, whether it provides aid in a home setting or in a facility.

But a spate of government lawsuits charging negligence and malfeasance against some hospice providers underscores the risks of profiting from the dying: Companies have been accused of signing up people who are not terminally ill, denying visits from a nurse or even refusing a needed trip to the hospital.

When a Health Insurer Also Wants to Be a Hospice Company

No One is Coming: Hospice

TIME reports: [A]s the industry has grown, the hospice care people expect — and sign up for — sometimes disappears when they need it most. Families across the country, from Appalachia to Alaska, have called for help in times of crisis and been met with delays, no-shows and unanswered calls, a Kaiser Health News investigation published in cooperation with TIME shows.
The investigation analyzed 20,000 government inspection records, revealing that missed visits and neglect are common for patients dying at home. Families or caregivers have filed over 3,200 complaints with state officials in the past five years. Those complaints led government inspectors to find problems in 759 hospices, with more than half cited for missing visits or other services they had promised to provide at the end of life.

"Flunking" Hospice

To qualify for hospice care, two doctors must certify that a patient is expected to live no more than six months. But patient James B. Nelson discovered that sometimes the doctors are wrong.

"It was decided that I was not dying fast enough," he told Arizona Public Media in 2015. "And so, to put it most succinctly, I flunked the hospice program."

Nelson died a few months after giving that interview, but his situation isn't all that unusual.

Government reports show that the median rate of hospice patients discharged before death has climbed steadily since at least 2000, peaking in 2012 and 2013 at almost one patient in five, though more recently the percentage has declined somewhat. But the rate actually varies widely from one care organization to another. Some hospices discharge less than 2 percent of their patients prior to death, while others discharge more than 80 percent. Non-profits have lower rates of live discharge than for-profit hospices. Regionally, live discharge rates are highest in the South.

It's important to understand, though, that when patients are discharged from hospice, they don't necessarily go anywhere. Hospice agencies, whether they are independent or affiliated with an institution like a hospital, usually deliver services to patients in their homes.

1 in 5 hospice patients discharged

A Smile at the End of Life

When a dying man wants new front teeth, what do you do?

I told Dr. Monaco we have a terminally ill patient who needs to eat and that cosmetically, replacing the front teeth would do a lot to lift his spirits. Dr. Monaco didn’t hesitate; he told me to bring Mr. Sacchetin in and that there would be no charge for his services. When I told Mr. Sacchetin, he was deeply moved.”
Rager’s husband came to the Center first thing that Tuesday morning to bring Sacchetin to his appointment. Monaco took the dental impression and fitted Sacchetin with a “flipper,” an appliance that is commonly used for patients who require something the same day, whether due to trauma or extraction. It was ready that afternoon.
“My heart really went out to him. As soon as I saw him, I knew it was the right thing to do,” said Monaco, who not only waived his fee but also covered the lab costs out of his own pocket. “I was eager to help out in any way I could for someone in need like that,” he added.
When he got his teeth back that afternoon, Sacchetin turned to Monaco with a huge smile of thanks and said, “Beautiful.”
Monaco said the experience nearly brought him to tears. “It really showed that human part of all of us that says ‘I want to leave this world with a smile, looking the best that I can.’ He was so happy when the flipper went right in with a perfect fit, and it was so important to me that he was happy.

A Smile at the End of Life

Hospice chaplain tries to give patients purpose and peace | The Wichita Eagle

"We deserve to die in peace, Father Tom Welk says. He’s the chaplain at Harry Hynes Memorial Hospice in Wichita. You could say he counsels the dying. He says he counsels the living. We should talk about death more, he says. We should help each other die in peace....So hospice care is not only about giving comfort. It’s about giving purpose."

Hospice chaplain tries to give patients purpose and peace | The Wichita Eagle

A Hospice Nurse: "The Family Is Your Patient"

In hospice, the family is your patient. They’re truly living their darkest days. For many of them, this admissions meeting is an overwhelming process. Every emotion that they have inside of them that maybe even hasn’t ever surfaced might come to the top. But I don’t want families to cry.

During that first meeting I don’t say: “So this is what we do for people who are dying.” I say: “Hospice is not about dying. It is about living the remainder of your life how you want to. Not how I want you to, not how your husband, wife, daughters, or sons want you to, and not how the doctor wants you to, but how you want to.”

If you think about the last time you went to the doctor, he probably said, “Okay, this is what I think. These are the tests I want to run.” Nobody asks you, “What do you think? Does this sound reasonable? Do you want to do it?” Nobody tells patients how their quality of life is going to go down the toilet when they get chemo. So it’s sometimes hard for patients to wrap their head around the idea that everything is their choice now, they’re driving the ship. That’s the mission of hospice.

Hospice Chaplain Writes About Her Talks with the Dying

"It took me a while to understand that talking about their family and their relationships within their family, their love relationships, was their way of trying to understand these larger spiritual questions.... We’re all meaning-making creatures. All our lives, this is what we’re doing, whether or not we realize it. If you think of these big spiritual questions — why am I here, what does it all mean, why am I suffering now? — those are really hard questions, and so we tend as human beings to want to talk about the abstract by thinking about concrete examples. When we talk about God as love, it’s really natural for people to think: What have my experiences of love been? And what do those experiences, good and bad, teach me about God?"

Hospice Chaplain Writes About Her Talks with the Dying

When is dying a laughing matter? Hospice humor gains a following - StarTribune.com

The therapeutic humor movement is catching on. Last year, the Minnesota Network of Hospice and Palliative Care, which serves Minnesota, Wisconsin, Iowa, North Dakota and South Dakota, closed its annual conference with a session from a humorist. And this year, the conference will open with a session on laughter yoga. “Laughter, of course, is a healthy thing,” said Susan Marschalk, the network’s executive director. “It’s certainly good for people who are caregivers. It’s really good for hospice providers and the people who are working with patients who witness people dying every day. They need laughter.” The connection between humor and health also is recognized by the Association for Applied and Therapeutic Humor. Based in Illinois, the group was started by a registered nurse and has members in Minnesota from various professions — including scholars, psychologists, nurses and doctors. Therapeutic humor is “any intervention that promotes health and wellness by stimulating a playful discovery, expression or appreciation of the absurdity or incongruity of life’s situations,” the group’s website says. “There is a very close relationship between laughter and tears,” said Mary Kay Morrison, president of the association and a self-described “neurohumorist.” “Laughter is a relief. When you laugh so hard that you cry, there is a close connection there. It’s something that brings relief from the stress and anxiety. “Even in hospice, I believe when someone is able to laugh about the situation, you know they are starting to accept it and starting to cope with it,” she said.  “Even in hospice, I believe when someone is able to laugh about the situation, you know they are starting to accept it and starting to cope with it,” she said.

When is dying a laughing matter? Hospice humor gains a following - StarTribune.com:

A Collector of Hugs | Moments of Life

Sophie Whitlock, Hospice of Bristol Hospital - Hospice Nurse: A collector of hugs, that's what  I am With hope  in my heart, and love in my hands Each hug is different, not one is the same Each has an owner, a story,  a name There's a hug for the time When things seem  so bleak And a hug for the one Whose body  is weak There's a hug for support To get through the day And a hug to bring  peace When you feel you lost your  way There's a hug for the tears That silently fall And a hug to bring comfort Sweet comfort to all There's a hug that  says, "I love you," And, 'Til be right here," And a hug for the  burdens That you must  bear There's a hug for the hope That will never  die And a hug for the  journey When it's time  to say, "Good-bye" A collector of hugs I'll continue to be The future will look brighter Just hug, and you'll see"

A Collector of Hugs | Moments of Life

PBS: Seven Songs for a Long Life

Coming to PBS: Seven Songs for a Long Life, about music and dance as a part of palliative and hospice care.

SPIRITUALITY IN PALLIATIVE CARE.

To be brought close to the bone through the adversity of illness, the closeness of death and the knowledge that we are not in control of the situation, is to come close to the essence of who we are, both as unique individuals and as human beings. 

Therefore the greatest gifts we can offer our family and friends are helping them to die well. Sometimes they are ready to go to God but we have a hard time letting them go. But there is a moment in which we need to give those we love the permission to return to God, from whom they came.  

This was the first 3 day spirituality training organized by KEHPCA which brought together Muslims, Christians- from different religions including Hospital chaplains, Bishops, Reverends, Catholic  priests and palliative care providers. – from  20 palliative care units and hospices.

SPIRITUALITY IN PALLIATIVE CARE.

Revolutionizing Hospice Care With A Mindful Approach To Death

“We’re shifting from a disease-centered to a person-centered model in health care,” Dr. B.J. Miller, the Project’s executive director, told Martin. “If seen through, this shift would revolutionize how care is delivered and how illness and suffering and dying are experienced.”

Revolutionizing Hospice Care With A Mindful Approach To Death:

A doctor focused on dying finds lessons for better living

"Last year, 40-plus percent of Americans who died were enrolled in hospice. By some measures that’s great. But if you start looking at those numbers, fully a third of those people were in hospice for less than a week, which is really a problem for a number of reasons. So we’ve got a long ways to go....When someone asks me the question, I say palliative care is a multidisciplinary pursuit of quality of life. It doesn’t say anything about death or dying. It focuses on quality of life. And not in a positive spin, turn-that-frown-upside-down way. It’s real. Anyone who does work in hospice will tell you that, yeah, sure, it’s about death, sure, it’s about suffering, but these are the foils for happiness, for beauty, for meaning making. That’s the full equation we need to get across to people. That somehow living and dying aren’t opposed. They’re absolutely entwined with each other. And that frame shift is really novel. Palliative care is all about quality of life;a bunch of disciplines working together to support the patient and family, to eke out the best quality of life possible.

A doctor focused on dying finds lessons for better living

A Hospice Nurse

Heather is not brisk or efficient, as nurses in hospitals are. She is purposely inefficient, in fact. Most of the time when she visits patients, she doesn’t have much to do: she takes vital signs, she checks that there are enough supplies and medications in the house, she asks if old symptoms have gone away or new ones developed. If she were rushing, she could do all that in about five minutes, but her visits usually last an hour or more. Sometimes there is a complicated medical situation to take care of. Sometimes she does something non-medical that needs to be done, which is the hospice way—she might sweep a floor, she might heat up dinner. But, even when there’s nothing else to do, the idea is to be around longer, to chat, to sit close by, to put her hands on the patient’s skin as she goes about her checkup. Her visit may be the high point of the day for the patient, who may not be able to get out of bed, or for whoever is taking care of the patient, who may not have left the house or seen anybody else for a day or two; either or both of them may be going a little crazy and may badly need interruption or variety of any kind, ideally someone different to talk to. So Heather moves slowly; she sits down; she delays; she lingers.
Dying can be long and bewildering, lonely and painful, frequently undignified, and consumed by pressing and unpredictable and constantly changing and multiplying needs. It’s a relief to have someone around who understands what’s going on and what may happen next. On the other hand, when dying is long it becomes ordinary, just another kind of living, but one in which your friends may be gone and your children busy, or not busy enough. In that case, it can be a good thing to see someone who is not a member of your family; who comes from the world outside your illness; who has known you long enough to be familiar but not long enough to have heard your stories already; who wants to know where your pain is but doesn’t need you to explain everything; and who is there to take your vital signs but who behaves as though she might have come over to borrow a snow shovel or a couple of eggs.<

The Threshold - The New Yorker: