End-of-Life Choice, Palliative Care and Counseling

Posts TaggedHospice

On a Mission to Transform End-of-Life Care

by Michelle Brandt
Scope
November 27, 2012

No one likes talking about dying, but Stephanie Pincus, MD, MBA, believes we all need to do more of it. Pincus is one of the key people who participated in the work that resulted in  a new Institute of Medicine committee tasked with exploring and preparing a report on the current state of end-of-life care in the country. The committee’s ultimate goal is to ensure that people are able to die as they wish.

“People do not want to die alone, in a hospital bed, hooked up to 15 different machines, with buzzing in their ears. They want to be with their families in familiar surroundings, able to say their good-byes peacefully,” Pincus, who recently gave a talk at the medical school sponsored by the Stanford Palliative Care training program, told me.

“Until about 100 years ago death was part of life. In early times in the U.S. when someone died they were laid out on the kitchen table,” she continued. “But as we moved medical care to the hospital, death became isolated and isolating. We need to reclaim death from the hospital and reintegrate with the family.” More

Three Generations Gather for End-of-Life Conversation

by Maggy Patrick
ABC News
October 9, 2012

Norb Ranz and his daughter Maureen Jennings have always talked about everything — except one thing. So the two decided to gather three generations at Jennings’ childhood home on his 85th birthday to talk about what Ranz may want at the end of his days.

“My dad is 85 today… he’s still very, very active,” she said. “He’s a great storyteller and a wonderful friend.

The family talked about everything from what the service would be like to what they would do if Ranz’ health declined.

“Now we’re just asking that you share some of your thoughts about what you would like at the end of your life, so that we can honor your wishes,” Jennings said.

“How strongly do you feel about staying in your house? If you have the resources to stay here … is that something that’s really important to you?” she asked him.

“I would miss it, but anybody would,” Ranz responded. “If the time comes and I can’t take care of it, or know enough people who will help me take care of it … but it’s still kind of fun to be here.”

Jennings and her sister Molly Calhoun used their mother — who passed away earlier this year — as a touchstone to talk about how important knowing their father’s wishes were to them. More

The Hospice Option

By Susan Canfora
The Daily Times
September 15, 2012

Talking about death is difficult.

Even for an oncologist, telling a patient treatment isn’t working, they most likely aren’t going to be cured and it’s time to think about a different kind of care is grueling.

“It’s a very hard conversation to have,” said Dr. David Cowall, medical director of Coastal Hospice in Salisbury, shaking his head and recalling spending a minute alone in his office to gather his thoughts before having that talk with patients.

“If we’re not going to cure them, there comes a time to stop treatments and look at comfort and care. Some patients bite your head off when you tell them that. Some tell you off and some go somewhere else,” Cowall said.

Interested in determining if patients are better off continuing traditional medical care or going into hospice, where symptoms are managed, Cowall co-authored the paper “End-of-Life Care at a Community Cancer Center.” It was published in the June 2012 issue of the Journal of Oncology Practice. More

Going Gently Into That Good Night

By Daniel Krieger
Narratively
September 18, 2012

If you’re dying and don’t care to wait around for death, you can always book your own appointment. One simple way to do this would be to stop eating and drinking; another would be to stop life-sustaining medicine or devices. Assuming you can decide on your own, both of these methods are good and kosher as far as the law goes. A third approach, however, ventures into a grayer area of legal and ethical terrain—quaffing a lethal cocktail. In the business of ending your life, the means matter a lot more than the final result.

These were three things my mother, Ann Krieger, was pondering when she reached the final leg of her terminal illness last year, a month before Mother’s Day. After several years of fighting colon cancer, her doctor broke the news that the cancer had spread and the treatment was no longer working. There was no more they could do.

“You’ve got months, not weeks,” he said.

“What should I do?” she asked. “Should I end it now?”

“No,” he said. “You don’t want to do that.”

Actually, my mother kind of did, but the doctor referred her to hospice and gave her information about palliative care, a mode of treatment that relieves the pain of patients with serious illnesses. But in my mother’s case, the physical distress was less acute than the existential. Coming to terms with the fact that you’re going to die is elusive. For some people, like her, an attempt to manage the logistics could make it seem more doable. She and my father had given this some thought and had very specific ideas about how they wanted their end-of-life matters handled.

Six years earlier, horrified by what was taking place with Terri Schiavo in Florida, they sat my sister and me down to give us instructions. Should it ever come down to it, my parents told us, they wanted no artificial resuscitation, experimental procedures, machines or IVs—none of that stuff. They just wanted us to make sure they would be allowed to die naturally. “The idea,” my father explained to me recently, “is to be pain-free, comfortable and not go through a lot of unnecessary, costly and painful treatments which won’t help anyway.”

My mother had first-hand experience with this 21 years ago when her mom, my grandma Trixie, who was in perfect health at 85, was struck by a hit-and-run driver near her home in Queens. The doctors at New York Hospital said she had severe trauma in her brainstem and wouldn’t wake up. She was hooked up to a ventilator. More

Death Phobia Prevails

Hospice and Palliative Care are “Not About Dying”

Last week’s “Heights of Compassion; Bridges to Choice” Conference in Chicago was a stunning success. Participants relished the opportunities to gather information and gain tools for personal empowerment and community activism. Several speakers spoke to our society’s reluctance to acknowledge death, and made the same point in different ways.

Teacher and author Stephen Jenkinson called our society “death phobic and grief illiterate,” with healthcare professionals among our most vigorous enablers. He accused palliative care and hospice professionals of predictably “catering” to death phobia whenever it shows up. I spoke of the marketing to seniors: what I called a “sex on the golf course” message.

As if on cue, articles appeared immediately following the conference to prove our point. On July 3rd the Associated Press reported on hospices disavowing their role in dealing with end-of-life experiences and losses.

Robin Stawasz, family services director at Southern Tier Hospice and Palliative Care in upstate New York told the reporter hospice isn’t about tending to the dying at all. No, “we come in and help people go golfing or go snowbird down to Florida, or go out to dinner several nights a week. We help them get to the casinos on weekends,” she said. “This is not getting ready to die. This is living — living now, living tomorrow, making the best possible life with what you have.”  An AARP blog reported gleefully that this is “just the beginning,” as hospices “diversify their services” in preparation for the eventual needs of aging boomers

One of our conference plenary sessions featured a dialogue between Rebecca Kirch from the American Cancer Society and the Center to Advance Palliative Care (CAPC), and Compassion & Choices board member David Muller. David chairs the Medical Education department at Mount Sinai School of Medicine and attends at the Hertzberg Palliative Care Institute. The topic was reframing the national conversation from “death and dying” to “quality of life.”

Rebecca’s organization wants more patients to access palliative care. They commissioned public opinion research to give the palliative care community a roadmap to communicate more effectively with consumers and policymakers on the benefits and future direction of their field. Unsurprisingly they found people shy away from being reminded of their mortality. Apparently the CAPC decided the best plan is to disavow any real association with, or focus on, the end of life. Her presentation described advantages of the new, upbeat goal of lifting the “quality of life” throughout an illness, from diagnosis to … well, to something “not death.”

David followed Rebecca’s talk with an astute analogy. He described a practice among some established physicians of rebuking insurance coverage and treating only patients who pay with cash. This alarming behavior, he said, was a growing trend in New York. These physicians built their practices on healthcare insurance payments, only to cast insurance contracts aside once they assembled sufficient loyal and wealthy patients. They owe their careers and livelihood to insurance, but outgrew their dependence on it.

David’s point is that palliative care as a medical specialty grew from hospice, which arose to meet the needs of patients facing the end of life. Hospice promised not to abandon these patients or torture them with fruitless treatments. They declared dying patients deserve care aimed at comfort, not cure. But now, as some doctors turn their backs on insurance, some hospices and palliative care leaders turn their backs on death and dying. They can’t be bothered with the arduous task of helping America overcoming its death phobia and grief illiteracy. How much easier to take the quick gratification and join the phobic chorus.

Twenty years ago there was no such thing as medical accreditation in palliative care. Death and dying brought palliative care to the dance of medical specialties. Now that palliative care doctors have learned the steps, they believe they deserve a more attractive dance partner. First palliative care left death standing against the wall.  Now hospice looks to do the same. Who will ask death to dance?

We at Compassion & Choices will, of course.  Because we have learned over and over that only death — only an acute awareness of our mortality — can teach us the joyful, authentic, intensely human dance of life.