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.”

...

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.

"Pediatric Palliative Transport" Letting Dying Children Go Home

"[P]ediatric palliative transport” [is a] a rare but growing practice that aims to give families choice, control and comfort at the end of life.

Palliative transport lets families move critically ill children from the hospital intensive care unit to their home or hospice, with the expectation they will die within minutes to days after removing life support.


A collection of photos of Anthony Gabriel Brescia-Connell, who was 16 when he was transported from Boston Children’s Hospital to his home in Medford, Mass., where he died on March 3, 2011, surrounded by his family and beloved stuffed animals. (Photo by Kayana Szymczak for Kaiser Health News/Photo by Kayana Szymczak for Kaiser Health News)
It means “having parents go through the hardest thing they’ll ever know — in the way they want to do it,” Nelson said. Boston Children’s has sent 19 children to home or hospice through palliative transport since 2007, she said.

These final journeys — also offered by the Mayo Clinic, Children’s Hospital of Philadelphia and Kentucky Children’s Hospital — can involve elaborate planning, delicate transfers and even long helicopter rides. In some cases, families took a child far from home for a last-ditch effort to save their lives.

At the Mayo Clinic, palliative transport has helped culturally diverse families carry out end-of-life wishes for their dying children. In one case, a newborn girl rode 400 miles by ambulance to return to her Amish community, where she was extubated and died in her parents’ arms, in the company of her 11 siblings. In another, an 8-month-old Native American girl traveled 600 miles by air and ground ambulance to her rural tribal reservation, where she could participate in end-of-life rituals that could not be done in the hospital.

A final comfort for dying children: ‘Palliative transport’ to send them home

Advice for Future Corpses: A Palliative Nurse on What She's Learned About Last Days

In Advice for Future Corpses, author and palliative care nurse Sallie Tisdale shares insight and contemplation into what constitutes a good death. Managing our own avoidance and fear, she writes, is key to shepherding a peaceful final passage. Here she describes what to expect, and consider, during the last days and hours.

Death takes many forms. One death is anticipated over months. Another death is stunningly abrupt. And now and then death is held back by technology. I have seen how these deaths are different, and they are all the same, in the end: A person breathes and then breathes no more. He enters a stillness like no other. Breath. Another breath, and then no more. But when the breaths are made by a machine or the blood pressure is sustained by powerful drugs, someone has to make an awful decision....Journalist and author Virginia Morris pleads for a change of terms: “When we take a terminally ill patient off life support, we are not ‘pulling the plug,’ we are ‘freeing’ the patient to die. We are ‘releasing’ her from excessive technology and invasive treatments. When we allow death to happen, we are not killing people, we are caring for them. We are loving them....”

A dying person’s attention turns toward a place we do not see and that they cannot explain. They are done with the business of the living, as it were, and more or less finished with us. Now they are not a mother or a plumber or a friend. Now they are entirely a dying person, and the world begins to shine. In spite of going hours without speaking, in spite of needing help to button a shirt, he is busy. He may not have the energy to talk, because he is waiting for something and that takes everything he has left.

He may be waiting to understand why.

Laugh. Laugh! Sing. The last kiss, the last dream, the last joke to tell. I have been telling you all the many things we might say, and shouldn’t. Things to say as the end is coming: I love you. I hope the best for you. We will be all right. Go with peace.

Dying Patients Forced in Twice as Much "Rehab" in For-Profit Facilities

The New York Times reports on a study showing that residents of for-profit assisted living facilities are given twice as much "rehab" as those who are not, even when they are close to death, suggesting that the services are more about revenues than the patient:

Nursing home residents on the verge of death are increasingly receiving intense levels of rehabilitation therapy in their final weeks and days, raising questions about whether such services are helpful or simply a lucrative source of revenue.

That is the heart of a new study published in the Journal of the American Medical Directors Association, which found that the practice was twice as prevalent at for-profit nursing homes as at nonprofit ones.

More broadly, the study’s findings suggest that some dying residents may not be steered to hospice care, where the focus is on their comfort.

Although the research is based on a relatively small number of patients in one state, it echoes what federal regulators have found in recent years.

It’s also a fresh reminder that families should keep a close watch on, and ask questions about, the kind of care their relatives are getting in nursing homes.

“Some of these services are being provided in the last week and sometimes on the day of their death,” said Dr. Thomas Caprio, one of the study’s authors. Dr. Caprio, who specializes in geriatric medicine, hospice and palliative care, is an associate professor at the University of Rochester Medical Center.

Rehabilitation services — physical, occupational and speech therapy — are “a potential revenue source for these facilities,” he added. “And when the plan of care shifts to hospice care and palliative care, that revenue stream disappears.”

Palliative care Lengthens Life as Well as Improving It

A new study shows that "Patients with advanced cancer randomized to receive outpatient specialty palliative care lived longer and had better quality of life."

Palliative Care is Medical Care, Too

When Senator McCain's family announced that he was no longer going to treat his cancer, some reporters said he was stopping medical care. But others understood that palliative care is medical care, too.  Isaac Chan wrote in the Washington Post about the difficult but vitally important conversations with dying patients.

Many physicians encourage early palliative care for terminally ill patients, to make the process of dying less painful, more cost-effective and patient-focused. But if the patients are not ready, instead of feeling relief, they may experience this advice as abandonment. Without first considering how patients understand their own condition, doctors risk returning to a culture of paternalistic medicine, one where physicians make decisions for the patient in the belief that they know best. Disagreements about treatments between doctors and their patients near the end of life can be devastating. So communication is vital.

A Gentler Death -- Palliative Sedation

The Washington Post reports on the grey area of palliative sedation that can relieve suffering and hasten death.

Under palliative sedation, a doctor gives a terminally ill patient enough sedatives to induce unconsciousness. The goal is to reduce or eliminate suffering, but in many cases the patient dies without regaining consciousness....While aid-in-dying, or “death with dignity,” is legal in seven states and the District [of Columbia], medically assisted suicide retains tough opposition. Palliative sedation, though, has been administered since the hospice care movement began in the 1960s and is legal everywhere....

Because there are no laws barring palliative sedation, the dilemma facing doctors who use it is moral rather than legal, said Timothy Quill, who teaches psychiatry, bioethics and palliative-care medicine at the University of Rochester Medical Center in New York.

Some doctors are hesitant about using it “because it brings them right up to the edge of euthanasia,” Quill said.

But Quill believes that any doctor who treats terminally ill patients has an obligation to consider palliative sedation. “If you are going to practice palliative care, you have to practice some sedation because of the overwhelming physical suffering of some patients under your charge.”

Barbara Bush in Palliative Care

The Bush family sets an example for us all with this graceful statement about the former First Lady's decision to stop medical treatment and rely on palliative care.

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.

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.

Many patients miss out on palliative care assessment before feeding tube placement, study finds - McKnight's Long Term Care News

"The majority of hospitalized patients who undergo feeding tube placement do so without receiving a palliative care assessment first, a recent study has shown. Researchers with Rutgers New Jersey Medical School analyzed the records of more than 200 patients who received a feeding tube, and found that only 12% had a palliative care assessment prior to the procedure. That number may be even lower across wider samples since Rutgers has a “strong palliative care presence,” lead researcher Ana Berlin, MPH, M.D., told Reuters on Tuesday. Patients at other hospitals who do receive an assessment often have lower rates of gastrostomy tube placement, Berlin said. Many patients are put on a feeding tube in order to be discharged to a long-term care facility, Berlin added. But between patients who are unable to make decisions for themselves, and family members who receive information on the procedure in technical terms that don't address quality of life issues, the tube can hinder patients' post-acute care goals."

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.

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

How Hospice Care Can Provide a More Positive End of Life Experience

Royal College of Art students collaborate with London hospice to 're-style' the experience of death | Features | Lifestyle | The Independent

Designing a welcoming, supportive environment for those who have little time and want to make the most of it as comfortably as possible.

"The biggest shocker for me was the significance of distraction," Jones says. "We couldn't figure out why patients were constantly gathering around a television to watch game shows. By talking to them, we discovered that the distraction it offered was the source of its appeal. When we realised this, we began exploring options for other forms of distraction and interaction."

Royal College of Art students collaborate with London hospice to 're-style' the experience of death | Features | Lifestyle | The Independent:

In Palliative Care, Comfort Is the Top Priority - The New York Times

"Because most people with serious illnesses are older, seniors and caregivers should understand that palliative care offers more care as needed, not less. Unlike hospice, patients can use it at any point in an illness — many will “graduate” as they recover — without forgoing curative treatment. Like hospice, however, palliative care focuses on quality of life, providing emotional and spiritual support for patients and families, along with drugs and other remedies to ease symptoms. Its practitioners help patients explore the complex medical decisions they often face, then document their preferences. It pays off for patients and families. In 2010, a randomized trial of 151 patients with metastatic lung cancer at Massachusetts General Hospital found that those who received early palliative care scored significantly higher on quality of life measures than those receiving standard care, and were less likely to suffer from depression. They were also less likely to get aggressive end-of-life treatment like chemotherapy in their final weeks. Yet they survived several months longer. "


In Palliative Care, Comfort Is the Top Priority - The New York Times

Many in Hospice Don't Get Medical Visit in Last 2 Days of Life: Study

In the last two days before dying, many hospice patients cared for at home or in a nursing home were not seen by a doctor, nurse or social worker, a new study finds. The researchers found that one in eight Medicare patients didn't get such visits, especially if they were black, dying on a Sunday or were in a nursing home....Dr. Alexi Wright, an associate professor of medicine at Harvard Medical School in Boston, said that hospices are underfunded.  It's the one area in medicine that is a per-diem service paid for by a fixed daily rate that must cover medications, equipment and clinical caregivers' salaries at a cost that's less than a single dose of chemotherapy, she said. "Families are often overwhelmed when losing a loved one and haunted by their final moments," Wright said. "This is too important a time to shortchange patients and their families. As this study shows, hospice payment reform is long overdue."

Many in Hospice Don't Get Medical Visit in Last 2 Days of Life

Reevely: Father’s death drives Ottawa South MPP’s efforts to improve Ontario’s palliative care | Ottawa Citizen

“We invest a lot — as parents, as a society, as a government — when people come into this world. I think going out deserves the same sort of attention and support,” Fraser says, and he means from everyone.

People’s worlds narrow when they’re dying, he says, but the things they still want, they want very badly. “It’s generally acknowledgments of what’s important to you — often, that’s just that you’re here and it matters,” Fraser says."

Reevely: Father’s death drives Ottawa South MPP’s efforts to improve Ontario’s palliative care | Ottawa Citizen

Hospice is not only for the patient but also the family

"One misconception about Hospice is that it's strictly for the patient. It is for the patient but it is also for the patient's family.

Hospice has a bereavement program, which also helps children, in the schools."



Hospice is not only for the patient but also the family

Unequal Lives, Unequal Deaths - The New York Times

 "Death may be humanity’s great equalizer, but the inequalities suffered in life – leading to a shorter life expectancy – become inequalities in the experience of dying as well.

When I began my career, I had naïvely assumed that, if time were short, who wouldn’t prefer the familiarity of home and palliative medicine’s focus on quality of life to the chaotic mess of the hospital? But I’ve learned that even when my patients accept hospice services, the proverbial “good death at home” is often out of their reach. Fully experiencing the benefits of home hospice requires resources: involved, dedicated family members. Money to afford caregivers, particularly in the absence of involved family members. A neighborhood whose local pharmacy actually stocks opiate medications for severe pain. Insurance that covers stays in nursing homes so that family members can simply be family members instead of caretakers.

Without these luxuries, which so many others take for granted, dying at home could actually be less comfortable than dying in the hospital. Over this past year, I have stepped across the wide gap between my idealistic conception of hospice care and the reality of providing it amid life circumstances that shape the circumstances of dying."



Unequal Lives, Unequal Deaths - The New York Times: