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Illustration: Sara Wong for NPR

 

When A Beloved Life Ends,

Virtual Hugs Can't Replace Human Touch

NPR

May 3, 2020    7:00 AM ET

https://www.npr.org/sections/health-shots/2020/05/03/
844806361/when-a-beloved-life-ends-virtual-hugs-cant-replace-human-touch

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Kristen Radtke

is the author of the graphic nonfiction book

"Imagine Wanting Only This" (2017),

and the forthcoming books

"Seek You: Essays on American Loneliness" (2021),

for which she received a 2019 Whiting Creative Nonfiction Grant,

and "Terrible Men", a graphic novel, all from Pantheon.

 

Ryan Kellman is a producer and visuals editor

on NPR's science desk.

 

On Dying Alone: 'Behind Every COVID-19 Case, There Is A Story'

NPR

June 6, 2020    7:00 AM ET

https://www.npr.org/sections/health-shots/2020/06/06/
864093213/on-dying-alone-behind-every-covid-19-case-there-is-a-story

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Illustration: Kim Ryu

 

Dying in the Neurosurgical I.C.U.

In cases of brain death or neurologically devastating injury,

poor communication can make painful situations even harder.

NYT

Jan. 14, 2020

https://www.nytimes.com/2020/01/14/
well/live/brain-dead-neurosurgical-ICU-communication.html

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Illustration: Arianna Vairo

 

Is It Better to Die in America or in England?

NYT

JAN. 19, 2016

https://www.nytimes.com/2016/01/20/
opinion/is-it-better-to-die-in-america-or-in-england.html

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

end        USA

 

https://www.npr.org/sections/health-shots/2020/05/03/
844806361/when-a-beloved-life-ends-virtual-hugs-cant-replace-human-touch

 

 

 

 

 

 

 

end of life        USA

 

https://www.npr.org/2020/06/26/
884051182/end-of-life-planning-is-a-lifetime-gift-to-your-loved-ones

 

http://www.npr.org/sections/health-shots/2017/01/30/
512426568/doctor-considers-the-pitfalls-of-extending-life-and-prolonging-death

 

http://www.nytimes.com/2016/03/28/
opinion/at-the-end-of-life-too-few-words.html

 

http://opinionator.blogs.nytimes.com/2015/10/27/
talking-early-about-how-life-should-end/

 

http://www.nytimes.com/roomfordebate/2014/09/25/
finding-humane-care-at-the-end-of-life

 

 

 

 

 

 

 

at the end of life        USA

 

https://www.nytimes.com/2018/01/06/
opinion/sunday/hospice-good-death.html

 

 

 

 

 

 

 

end-of-life care        UK

 

http://www.theguardian.com/society/2015/may/20/
too-many-die-without-dignity-report-end-of-life-care-nhs

 

 

 

 

 

 

 

end-of-life care        USA

 

https://www.npr.org/sections/health-shots/2020/07/09/
865570384/planning-for-end-of-life-care-is-more-crucial-than-ever-heres-how

 

 

 

 

 

 

 

 

end-of-life wishes        USA

 

http://opinionator.blogs.nytimes.com/2015/04/29/
the-right-paperwork-for-your-end-of-life-wishes/

 

 

 

 

 

 

 

the end        USA

 

http://opinionator.blogs.nytimes.com/category/the-end/

 

 

 

 

 

 

 

final days        UK

 

http://www.independent.co.uk/news/uk/politics/margaret-thatchers-final-days-
the-oncesharp-mind-and-capacious-memory-that-served-her-in-office-
deserted-her-8565006.html

 

 

 

 

 

 

 

final hours        UK

 

http://www.guardian.co.uk/music/2009/jun/26/
michael-jackson-final-hours

 

 

 

 

 

 

 

final moments        UK

 

http://www.theguardian.com/world/2013/dec/08/
nelson-mandela-shared-final-moments-graca-machel-winnie-madikizela

 

 

 

 

 

 

 

last hours

 

 

 

 

 

 

 

last words        UK / USA

 

http://www.nytimes.com/2012/12/30/
fashion/finding-the-words-or-not-to-say-goodbye.html

 

http://www.guardian.co.uk/lifeandstyle/shortcuts/2012/dec/02/
death-and-dying-popandrock

 

 

 

 

 

 

 

say goodbye to N        USA

 

https://www.npr.org/2020/04/11/
832572957/saying-goodbye-to-a-loved-one-from-a-distance

 

 

 

 

 

 

 

death throes        UK

 

http://www.theguardian.com/books/2013/aug/09/
roddy-doyle-financial-crisis-commitments

 

 

 

 

 

 

 

 

 

 

 

 

 

 

last rites        USA

 

https://www.nytimes.com/interactive/2020/06/06/
us/coronavirus-priests-last-rites.html

 

 

 

 

 

 

 

 

hospital chaplains > anoint the sick and administer last rites        UK

 

The ritual of applying oil

to the forehead of someone ill or dying

is considered

one of the most intimate

of Christian sacraments. 

 

https://www.theguardian.com/world/2020/may/06/
coronavirus-covid-19-chaplains-christian

 

 

 

 

 

 

 

anoint        USA

 

https://www.nytimes.com/interactive/2020/06/06/
us/coronavirus-priests-last-rites.html

 

 

 

 

 

 

 

anointing        USA

 

https://www.nytimes.com/interactive/2020/06/06/
us/coronavirus-priests-last-rites.html

 

 

 

 

 

 

 

be given the last rites / be read the last rites

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Before I Die        NYT        30 March 2015

 

 

 

 

Before I Die        Video        The New York Times        30 March 2015

 

When doctors diagnosed Karly Koch

with a rare genetic disorder,

they also made a grim prognosis.

 

Produced by: Michael Kirby Smith and Catherine Spangler

Read the story here: http://nyti.ms/1G8L1ci

Watch more videos at: http://nytimes.com/video

 

YouTube

https://www.youtube.com/watch?v=OEs2RHr99TI

 

 

 

 

 

 

 

 

 

 

 

 

 

 

American way of dying / end of life        USA

http://www.nytimes.com/2014/09/18/
science/end-of-life-care-needs-sweeping-overhaul-panel-says.html

 

 

 

 

dying        UK

http://www.guardian.co.uk/lifeandstyle/2013/jan/05/
florida-woman-adventures-bestsellers

 

 

 

 

the dying        UK

https://www.theguardian.com/lifeandstyle/2012/feb/01/
top-five-regrets-of-the-dying

 

 

 

 

 

 

 

the dying        USA

 

https://www.nytimes.com/2020/04/01/
opinion/coronavirus-death-elderly.html

 

 

 

 

 

 

 

dying        USA

 

https://www.nytimes.com/2020/01/14/
well/live/brain-dead-neurosurgical-ICU-communication.html

 

https://www.nytimes.com/2018/02/24/
opinion/sunday/wearing-my-dying-mothers-clothes.html

 

https://www.nytimes.com/2017/07/26/
books/review-dying-memoir-cory-taylor.html

https://www.nytimes.com/2017/07/11/
well/live/the-gentler-symptoms-of-dying.html

https://www.nytimes.com/2017/02/25/
opinion/sunday/what-dying-looks-like.html

 

http://www.npr.org/sections/health-shots/2016/10/31/
499762656/hospice-chaplain-reflects-on-life-death-and-the-strength-of-the-human-soul

http://www.nytimes.com/2016/03/20/
opinion/sunday/dying-with-nothing-to-say.html

 

http://opinionator.blogs.nytimes.com/2015/11/25/
mothering-my-dying-friend/

http://www.nytimes.com/2015/07/26/
opinion/my-periodic-table.html

http://opinionator.blogs.nytimes.com/2015/06/17/
experts-on-aging-dying-as-they-lived/

http://opinionator.blogs.nytimes.com/2015/03/04/
their-dying-wishes/

http://opinionator.blogs.nytimes.com/2015/02/27/
finding-joy-in-my-fathers-death/

http://www.nytimes.com/2015/02/19/
opinion/oliver-sacks-on-learning-he-has-terminal-cancer.html

http://opinionator.blogs.nytimes.com/2015/02/07/
when-doing-everything-is-way-too-much/

http://opinionator.blogs.nytimes.com/2015/01/31/
dying-shouldnt-be-so-brutal/

 

 

 

 

dying early        USA

http://well.blogs.nytimes.com/2016/03/29/
sitting-increases-the-risk-of-dying-early/

 

 

 

 

dying patients        USA

http://www.nytimes.com/2014/09/26/
opinion/who-speaks-for-dying-patients.html

 

 

 

 

palliative care        USA

https://www.npr.org/sections/health-shots/2020/05/04/
846485024/patients-dying-fast-and-far-from-family-challenge-practice-of-palliative-care

 

 

 

 

last moments        USA

https://www.nytimes.com/2018/09/08/
opinion/sunday/nhs-hospice.html

 

 

 

 

aid-In-dying medication        USA

http://www.npr.org/sections/health-shots/2016/03/23/
471595323/drug-company-jacks-up-cost-of-aid-in-dying-medication

 

 

 

 

dying wish        USA

http://opinionator.blogs.nytimes.com/2015/03/04/
their-dying-wishes/

 

 

 

 

the dying        USA

https://www.nytimes.com/2018/02/03/
opinion/death-dying.html

 

http://www.npr.org/2016/07/30/
488027745/music-for-the-dying

http://www.nytimes.com/2016/02/02/
health/dreams-dying-deathbed-interpretation-delirium.html

 

http://www.nytimes.com/2015/01/24/
your-money/death-doulas-help-the-terminally-ill-and-their-families-cope.html

 

 

 

 

the dying person        UK

http://www.theguardian.com/lifeandstyle/2016/feb/03/
death-hospital-nhs-end-of-life-palliative-care-family

 

 

 

 

 

 

 

 

 

Dying Shouldn’t Be So Brutal

 

January 31, 2015

2:30 pm

The New York Times

Opinionator

- A Gathering of Opinion From Around the Web

The End

By Ira Byock

 

“Travel safe!” It has become a nearly reflexive wish I give to friends who are coming or going. This fall, I noticed myself holding back from saying it to Michael, a dear friend who was wrestling with incurable cancer. The journey metaphor was too poignant.

I also avoided “Stay safe.” After all, dying is inherently precarious.

Instead I said: “Be well. I’ll be thinking about you.” That was true. I could have added, “and worrying about you.” That was true, too. Michael was receiving state-of-the-art treatments at a renowned cancer center in New York City. As he became sicker, the treatments got more intense. Each decision came with more difficult trade-offs and uncertainties. Each step to stay alive risked making things worse.

He knew it. We’d talked openly about it. His life was precious and worth fighting for, so every option was worth carefully considering. But modern medicine has yet to make even one person immortal. Therefore, at some point, more treatment does not equal better care.

When Michael was out of standard options, they offered him a Phase I clinical trial — essentially an experiment. But his increasing pain and breathing problems were being poorly managed, sapping his strength and will to live. By phone I suggested to the nurse practitioner overseeing the study that Michael and his family would benefit from hospice services, starting with ensuring that he was correctly taking both long-acting and “as needed” pain relievers (and adjusting laxatives to counteract the pain relievers’ constipating effects). Hospice providers could also have responded to his wife and children’s questions about the details of caring for him at home.

“It’s his choice,” the nurse said, referring to Medicare rules that require patients to choose between cancer treatment and hospice care.

It was, but what a terrible choice to have to make.

Michael, who has since died, was suffering needlessly. Hospice care could have vastly improved the quality of his waning life, and eventually it did. But those rules mean that dying patients enrolled in Phase I studies, which aren’t intended to be treatments, are routinely denied access to hospice services. Caveat mortalis — let the die-er beware!

Our health care system is well honed to fight disease, but poorly designed to meet the basic safety needs of seriously ill patients and their families. We can do both. We must.

People who are approaching the end of life deserve the security of confident, skillful attention to their physical comfort, emotional well-being and sense of personal dignity. Their families deserve respect, communication and support. Exemplary health systems and healthy communities deliver all of this today. But they are few and far between.

Since 1997, the Institute of Medicine has produced a shelf of scholarly reports detailing the systemic dysfunctions, deficiencies and cultural blinders that make dying in America treacherous. Most people want to drift gently from life, optimally at home, surrounded by people they love. Epidemiological and health service studies paint an alarmingly different picture.

An American living with cancer has a roughly one in four chance of dying in a hospital and a similar chance of spending a portion of his or her last month in intensive care. The chances are higher with chronic lung or heart disease. An American with Alzheimer’s disease will very likely spend most of his or her last months in a nursing home, yet many long-term care facilities are woefully understaffed and ill equipped to care for demented people.

Less than 45 percent of dying Americans receive hospice care at home, and nearly half of those are referred to hospice within just two weeks of death. Hospice was designed to provide end-of-life care, but this is brink-of-death care.

 

DYING is not easy, but it needn’t be this hard.

Most Americans don’t want to think about dying. There’s an assumption that dramatically improving how we die would be too complicated or costly.

Thankfully, the opposite is true. Over the past two decades the fields of geriatrics, hospice and palliative medicine have demonstrated that much better care is both feasible and affordable. Successful approaches share core attributes: meticulous attention to alleviating people’s symptoms and maximizing their independence, continuing communication and coordination of services, crisis prevention and early crisis management, and decision making rooted in patients’ and families’ values, preferences and priorities. Together these steps reliably improve sick people’s quality of life, modestly extend survival and save money.

Those of us who have been on a quest to transform care have been standing on a two-legged stool. We’ve demonstrated higher quality and lower costs. Missing is the visible, vocal citizen-consumer demand. Without it, large-scale change will not happen.

As a baby boomer, I wonder when we became inured to bad care. We’re the generation that transformed childbirth, creating the natural birthing movement over resistance from the medical establishment. As health outcomes when women were prepared for childbirth proved consistently higher than the status quo, the medical community gradually climbed onboard.

In the 1970s we supported hospice as a countercultural movement in response to people dying badly, mostly in hospitals, often in pain, often alone. Hospice proved effective and was eventually embraced by mainstream health care. It has become an industry with over 4,000 programs nationally, and the quality of care has become uneven. Still invaluable, hospice is no panacea.

It’s high time we boomers shook off our post-menopausal and “low T” malaise and reclaimed our mojo. Remember Howard Beale, the fictional news anchor brilliantly portrayed by Peter Finch in the 1976 film “Network”? Fed up with the inequities of modern life, one night Beale exhorts viewers to go to their windows and yell, “I’m as mad as hell and I’m not going to take this anymore!” We’ll figure out the details later, he says; right now it’s time to yell. And, across the country, they do.

The persistently unsafe state of dying in America should provoke a Howard Beale moment. We’ll find solutions in various white papers and Institute of Medicine reports. First, we need outrage.

With a citizen-consumer leg to stand on, we could write a Safe Dying Act. Let’s start by requiring medical schools to adequately train young doctors to assess and treat pain, listen to patients’ concerns and collaborate with patients and families in making treatment decisions — and test for those skills before awarding medical degrees. Let’s require nursing home companies to double staffing of nurses and aides, and the hours of care accorded each resident. Let’s set minimum standards for palliative care teams within every hospital. Let’s routinely publish meaningful quality ratings for hospitals, nursing homes, assisted living, home health and hospice programs for people to use in choosing care. And let’s repeal the Medicare statute that forces incurably ill people to forgo disease treatments in order to receive hospice care.

Medical school deans and corporate chief executives will vigorously testify against our bill, and opponents will try politicizing the matter as a means of paralyzing Congress. They will fail. When public safety is threatened and we become engaged as a national community, political action follows.

As the end of life approaches, whether death is welcomed or feared, there is a lot we can do to make the process of dying safer.
 


Ira Byock, a palliative care physician and the director of the Institute for Human Caring of Providence Health and Services, is the author of “The Best Care Possible.”

Dying Shouldn’t Be So Brutal,
JAN 31, 2015,
NYT,
http://opinionator.blogs.nytimes.com/2015/01/31/
dying-shouldnt-be-so-brutal/

 

 

 

 

 

Looking for a Place to Die

 

December 21, 2011
The New York Times
By THERESA BROWN

 

Pittsburgh

THE patient was a fairly young woman and she’d had cancer for as long as her youngest child had been alive. That child was now walking and talking and her mother’s cancer had spread throughout her body to the point where there were no more curative options. Aggressive growth of the disease in her brain had stripped her of her personality and her memories.

She had another child, too, a few years older, and a husband whose drawn eyes and tense frame bore the strain of trying to keep it all together. Extended family lived far away and couldn’t be brought closer. The husband and kids lived more than an hour’s drive from the hospital.

No one could say for sure how long she would live, but continued hospital care was clearly pointless. Nor could she go home: she needed more attention than her family could provide. Everyone — her physician, the husband, the palliative care team, we nurses — agreed she needed inpatient hospice care, and that it should be provided close to home.

The problem was, she had no place to go. There was a hospice facility near her house, but it would accept her only if she would die within six days.

I’ve run up against these kinds of time limits before in my work as an oncology nurse. There’s a certain logic to it: hospice insurance benefits are ideally used to cover the costs of end-of-life care in patients’ homes, for up to six months, while periods of inpatient care are for the “short term.” And although patients do die in inpatient hospices, part of the mission of hospice is allowing patients to remain at home instead of in a hospital; hence the turn away from inpatient care, which is costly and often intrusive.

But that leaves people like this patient — more than a few days away from death, unable to be adequately cared for at home and unable to afford to pay out-of-pocket for a facility — struggling to find a place to die.

Dying at home was neither safe nor compassionate for this patient. She needed constant supervision: she would struggle to sit up and moan in frustration, or lurch dangerously over the side of the bed. Her speech was more sounds than words, and she had no control over her bowels or bladder.

Her husband looked as if he might fold in on himself at any minute, and he’d already borne the burden of care for a long time. Though I didn’t know for sure, it’s likely that his insurance couldn’t guarantee continuous nursing care in the home as a covered expense. And the patient’s children had already lost so much of their mother; she no longer even recognized them. Did they need to witness her final deterioration up close at home?

Home was not the only option. She could have stayed in the hospital and pursued aggressive care. Indeed, if her physician or a family member had said “do everything,” meaning keep her alive as long as possible through intravenous medications and hydration and, ultimately, sending her to the intensive care unit on a ventilator, it would have cost thousands of dollars but, paradoxically, most insurance companies would have considered it a legitimate care option.

Doing everything possible to extend her life wouldn’t have benefited her or her family, though. Roughly a third of family members of I.C.U. patients show symptoms of post-traumatic stress, according to research by the French intensive-care expert Elie Azoulay and his collaborators. If a loved one dies in intensive care after discussions about advance directives and patient wishes — that is, after the family has been made fully aware of the finality of the situation — the psychological fallout is even greater, approaching 80 percent. We do not always aid the living by inflicting high-tech ministrations on the almost-dead.

In other words, inpatient hospice care made sense medically, financially and psychologically for this patient, but the system simply wouldn’t allow it.

The only option, then, was for me to convince the hospice staff that she would die within six days. I spoke with the inpatient coordinator, the administrator and the hospice admissions nurse, who came to the hospital floor to assess the patient.

My explanations were precise: “She’s on an antibiotic now, but that’ll stop in hospice so she could go septic. Her kidney function is already diminished; kidney failure is only a matter of time. She has periods of difficulty breathing, and hospice won’t have the respiratory support she’ll need, but you can give her morphine to stop the air hunger.”

All of us will at some point come to this pass; we will all need a place to die. It’s not easy to think about, but it is true. We can turn away from that hard fact, try to stall death, even bend it to our will for a little while in the I.C.U. Or we can face that most difficult of life’s trials and ask ourselves how to make it easier.

With this patient I ended up being persuasive enough, and she got her inpatient admission. Was she dead in six days? Probably; I don’t know for sure. What I do know is that her sad husband and two young children, who would never really know their mother, had a chance to grieve and say goodbye in the most humane way possible for them.

 

Theresa Brown, an oncology nurse,

is a contributor to The New York

Times’s Well blog and the author of

“Critical Care: A New Nurse Faces Death,

Life and Everything in Between.”

Looking for a Place to Die,
NYT,
21.12.2011,
http://www.nytimes.com/2011/12/22/
opinion/looking-for-a-place-to-die.html

 

 

 

 

 

Relaxing, Touching the Memory,

Music Helps With the Final Transition

 

July 3, 2011
The New York Times
By SUZANNE DeCHILLO

 

Every week, three music therapists from MJHS Hospice and Palliative Care crisscross the city and suburbs to sing songs to the dying. With guitars strapped to their backs, a flute or tambourine and a songbook jammed in their backpacks, they play music for more than 100 patients, in housing projects, in nursing homes and even in a lavish waterfront home. The time for chemotherapy and radiation is over.

The music begins: a song to hold death at bay, a song to embrace death, or to praise God. A Vietnam veteran asks for a song in Vietnamese. One man asked only for songs with death in the lyrics, to force his family to talk to him about the future. He was ready to talk about it. They weren’t. So the therapist sang Queen’s version of “Another One Bites the Dust.” “Amazing Grace” and other spiritual songs are most often requested just before death.

James D. Williams, 85, of Brooklyn, who is dying of cancer, says, “Right now I am on borrowed time.” A therapist, Charla Burton, visits to sing hymns with Mr. Williams and his wife of 61 years, Daphne, 79. “The Lord has kept me and I am very grateful,” Mr. Williams says. “With the backup of my wife. She holds on to me.” Both were born in Belize, and their songs, part of their spiritual practice, have a joyful Caribbean lilt.

In Oceanside, N.Y., Merle Gross, 73, is dying of breast cancer. Sitting beside an ocean inlet, she and Ms. Burton make selections for a songbook she wants to leave behind. If there is time enough, it will include songs for every member of her family, all the people she loved and her dog, Shayna.

And in a Manhattan housing project, a mother cradles her 6-month-old daughter, Cecilia, and Meredith Traver plays a lullaby on her guitar, softly singing the words, “Papa is going to buy you a mockingbird.”

One of the youngest patients in the program, Cecilia Havre, has a genetic defect, Trisomy 18; half those born with this disorder do not survive beyond the first week of life. The baby smiles at her mother, Chantel Vazquez, and her father, Eddie Havre. Cecilia is deaf, but the music soothes her parents. Cecilia is thriving in hospice — or end-of-life — care and may be moved to palliative care, where treatment may be incorporated.

Rose Vuolo, 86, an Alzheimer’s patient on Long Island, has had visits from Ms. Burton for four months.

Rose rarely speaks. “She has gotten progressively worse,” says her grandson, Paul Motisi. “It’s become constant confusion.” Except sometimes when Ms. Burton visits.

Ms. Burton plays the Cole Porter song “Begin the Beguine” — the lyrics of which even Cole Porter said he could not remember without the sheet music. Yet on a good day, Rose sings along, with perfect pitch and range. It was the song she and her husband danced to at their wedding.

Millicent Wilson, 94, who is dying of colon cancer in the Bronx, stopped singing after her husband died and she got sick, says her son, Mark V. Wilson, who stopped working to take care of her. But because of her music therapist, Yelena Zatulovsky, his mother is singing again.

At the end of a song, she asks him, “Mark, why don’t you dance anymore?”

    Relaxing, Touching the Memory, Music Helps With the Final Transition, NYT, 3.7.2011,
    http://www.nytimes.com/2011/07/04/nyregion/music-therapy-helps-the-dying.html

 

 

 

 

 

Months to Live

Sisters Face Death

With Dignity and Reverence

 

July 9, 2009
The New York Times
By JANE GROSS

 

PITTSFORD, N.Y. — Gravely ill with heart disease, tethered to an oxygen tank, her feet swollen and her appetite gone, Sister Dorothy Quinn, 87, readied herself to die in the nursing wing of the Sisters of St. Joseph convent where she has been a member since she was a teenager.

She was surrounded by friends and colleagues of nearly seven decades. Some had been with her in college, others fellow teachers in Alabama at the time of the Selma march, more from her years as a home health aide and spiritual counselor to elderly shut-ins.

As she lay dying, Sister Dorothy declined most of her 23 medications not essential for her heart condition, prescribed by specialists but winnowed by a geriatrician who knows that elderly people are often overmedicated. She decided against a mammogram to learn the nature of a lump in her one remaining breast, understanding that she would not survive treatment.

There were goodbyes and decisions about giving away her quilting supplies and the jigsaw puzzle collection that inspired the patterns of her one-of-a-kind pieces. She consoled her biological sister, who pleaded with her to do whatever it took to stay alive.

Even as her prognosis gradually improved from hours to weeks and even months, Sister Dorothy’s goal was not immortality; it was getting back to quilting, as she has. She spread her latest on her bed: Autumnal sunflowers. “I’m not afraid of death,” she said. “Even when I was dying, I wasn’t afraid of it. You just get a feeling within yourself at a certain point. You know when to let it be.”

A convent is a world apart, unduplicable. But the Sisters of St. Joseph, a congregation in this Rochester suburb, animate many factors that studies say contribute to successful aging and a gentle death — none of which require this special setting. These include a large social network, intellectual stimulation, continued engagement in life and spiritual beliefs, as well as health care guided by the less-is-more principles of palliative and hospice care — trends that are moving from the fringes to the mainstream.

For the elderly and infirm Roman Catholic sisters here, all of this takes place in a Mother House designed like a secular retirement community for a congregation that is literally dying off, like so many religious orders. On average, one sister dies each month, right here, not in the hospital, because few choose aggressive medical intervention at the end of life, although they are welcome to it if they want.

“We approach our living and our dying in the same way, with discernment,” said Sister Mary Lou Mitchell, the congregation president. “Maybe this is one of the messages we can send to society, by modeling it.”

Primary care for most of the ailing sisters is provided by Dr. Robert C. McCann, a geriatrician at the University of Rochester, who says that through a combination of philosophy and happenstance, “they have better deaths than any I’ve ever seen.”

Dr. McCann’s long relationship with the sisters gives him the time and opportunity, impossible in the hurly-burly of an intensive-care unit, to clarify goals of care long before a crisis: Whether feeding tubes or ventilators make sense. If pain control is more important than alertness. That studies show that CPR is rarely effective and often dangerous in the elderly.

“It is much easier to guide people to better choices here than in a hospital,” he said, “and you don’t get a lot of pushback when you suggest that more treatment is not better treatment.”

But that is not to say the sisters are denied aggressive treatment. Sister Mary Jane Mitchell, 65, chose radical surgery and radiation for a grave form of brain cancer. She now lives on the Alzheimer’s unit, unable to speak and squeezing shut her lips when aides try to feed her.

Then there is Sister Marie Albert Alderman, 84 and blind in one eye from a stroke. She sees a kidney specialist, who, she says, “is trying to keep me off the machine by staying on top of things.” By that she means dialysis, which she would not refuse. “If they want to try it, fine,” she said. “But I don’t want it to go on and on and on.”

But Sister Mary Jane and Sister Marie Albert are exceptions here. Few sisters opt for major surgery, high-tech diagnostic tests or life-sustaining machinery. And nobody can remember the last time anyone died in a hospital, which was one of the goals in selling the old Mother House, with its tumbledown infirmary — a “Bells of St. Mary” kind of place — and using the money to finance a new facility appropriate for end-of-life care.

“There is a time to die and a way to do that with reverence,” said Sister Mary Lou, 56, a former nurse. “Hospitals should not be meccas for dying. Dying belongs at home, in the community. We built this place with that in mind.”

In the old Mother House, the infirmary was a place apart. Here, everyone mixes. Of the 150 residents, nearly half live in the west wing, designated for independent living, in apartments with raised toilets, grab bars and the like. These are the sisters who have given up paying jobs and shared apartments in the community because of encroaching infirmity.

Forty sisters live in assisted-living studios, and another 40 in the nursing home and Alzheimer’s unit, all in the east wing, with the chapel, dining rooms and library at the central intersection. Closed-circuit television allows those confined to their rooms to watch daily religious services.

Remaining money from the sale of the Mother House went into a shared retirement fund covering the women’s lodging and medical care, along with Social Security payments of the retired and salaries of those still working — one is a surgeon, another a chief executive, and several are college professors. Dr. McCann bills Medicare for home visits, although most of the care he delivers is not covered by the government and goes without reimbursement.

Dr. McCann said that the sisters’ religious faith insulated them from existential suffering — the “Why me?” refrain commonly heard among those without a belief in an afterlife. Absent that anxiety and fear, Dr. McCann said, there is less pain, less depression, and thus the sisters require only one-third the amount of narcotics he uses to manage end-of-life symptoms among hospitalized patients.

On recent rounds, Dr. McCann saw Sister Beverly Jones, 86, a former music teacher losing her eyesight to macular degeneration. Upbeat, Sister Beverly told the doctor about the latest book she was reading using a magnifying device — “Beethoven’s Hair” by Russell Martin, about the composer’s DNA.

He also saw Sister Jamesine Riley, 75, once the president of the congregation, who barely survived a car accident that left her with a brain injury, dozens of broken bones and pneumonia. “You’re not giving up, are you?” Dr. McCann asked her.

“No, I’m discouraged, but I’m not giving up,” Sister Jamesine replied in a strong voice.

He told her he worried that she now found herself with so little control. She nodded in stoic assent.

Some days, Dr. McCann said, he arrives with his “head spinning,” from hospitals and intensive-care units where death can be tortured, impersonal and wastefully expensive, only to find himself in a “different world where it’s really possible to focus on what’s important for people” and, he adds, “what’s exportable, what we can learn from an ideal environment like this.”

Laura L. Carstensen, the director of the Center on Longevity at Stanford University, says the convent setting calms the tendency for public policy discussion about end-of-life treatment “to devolve into a debate about euthanasia or rationing health care based on age.”

“Every time I speak to a group about the need to improve the dying process, somebody raises their hand and says, ‘You’re talking about killing old people,’ ” Dr. Carstensen said. “But nobody would accuse Roman Catholic sisters of that. They could be a beacon in talking about this without it turning into that American black-and-white way of thinking: Either we have to throw everything we’ve got at keeping people alive or leave them on the sidewalk to die.”

Often the Roman Catholic position on end-of-life issues is misconstrued as “do anything and everything necessary” but nothing in Catholic theology demands extraordinary intervention, experts say, nor do the sisters here, or their resident chaplain, Msgr. William H. Shannon, 91, advocate euthanasia or physician-assisted suicide.

“Killing somebody who is very, very old, with a pill or something, that isn’t right,” Sister Dorothy said. “But everybody has their own slant on life and death. It’s legitimate to say no to extraordinary means. And dying people, you can tell when they don’t want to eat or drink. That’s a natural thing.”

Barbara Cocilova, the nurse practitioner here, sees differences in the health of these sisters compared with elderly patients in other settings. None have chronic obstructive pulmonary disease (perhaps because they do not smoke) and only three have diabetes (often caused by obesity). Among those with Alzheimer’s, Ms. Cocilova said, diagnostic tests tend to produce better-than-expected results among those who are further along in the disease process, a possible result of mental stimulation.

Dr. McCann and others say that the sisters benefit from advanced education, and new ventures in retirement that keep them active. Sister Jamesine was a lawyer who founded a legal clinic for Rochester’s working poor. Sister Mary Jane Mitchell was the first female chaplain in a federal penitentiary.

Sister Bernadine Frieda, 91, spry and sharp, spends her days visiting the infirm with Sister Marie Kellner, 77, both of them onetime science teachers. Sister Marie, who left the classroom because of multiple sclerosis, reminds an astounded sister with Alzheimer’s that she was once a high school principal (“I was?!”) and sings “Peace Is Like a River” to the dying.

“We don’t let anyone go alone on the last journey,” Sister Marie said.

Seven priests moved here in old age, paying their own way, as does Father Shannon, who presides over funerals that are more about the celebratory “alleluia” than the glum “De Profundis.” But he has been with the sisters since he entered the priesthood, first as a professor at Nazareth College, founded by the order, and now as their chaplain. He shares with them the security of knowing he will not die among strangers who have nothing in common but age and infirmity.

“This is what our culture, our society, is starved for, to be rich in relationships,” Sister Mary Lou said. “This is what everyone should have.”

    Sisters Face Death With Dignity and Reverence, NYT, 9.7.2009,
    http://www.nytimes.com/2009/07/09/health/09sisters.html

 

 

 

 

 

And at the End,

All the Comforts of the Carlyle

 

October 22, 2008
The New York Times
By COREY KILGANNON

 

Marie-Dennett McDill loved the Carlyle Hotel.

She stayed there whenever she was in New York, and adored the regular entertainers like Bobby Short and Eartha Kitt at the Café Carlyle, and the pianist Loston Harris in the lively Bemelmans Bar. She loved the uniformed elevator men and bellmen and the family of longtime staff. She loved that Central Park was only a short block away.

So when Mrs. McDill, who grew up in society in Washington and was enjoying an outdoors life in South Woodstock, Vt., learned she had terminal cancer this summer, her family immediately booked her a suite on the eighth floor for an open-ended stay, but one they sadly knew would not be open-ended enough.

“The family came to me and said, ‘We want to check her in till the very end,’ ” said Alexandra E. Tscherne, director of residences at the Carlyle. “It was a unique request, one I’ve never had previously. They wanted her set up in one of her favorite places, and they didn’t know how long it would last.”

It lasted 10 weeks. Mrs. McDill died in her sleep in the Carlyle last Wednesday.

Mrs. McDill was youthful and full of energy at 71 and spent her days outdoors gardening and painting, so it was shocking to her three children when she learned at the beginning of August that she had a fast-spreading cancer.

“It wasn’t a fight for life anymore, but a matter of time,” said her son Thomas Gardner.

The family hired 24-hour hospice care, but Mrs. McDill, at least until the very end, was in sufficient mental and physical shape to enjoy her final stay at the Carlyle. The hotel, at Madison Avenue and 76th Street, is one of New York’s most luxurious, with a long list of celebrities, presidents and royalty who have stayed or lived there.

Even as she was dying, she would take walks in Central Park in the daytime, and in the evening sit in a back booth in Bemelmans Bar, looking at the whimsical illustrations of New York City on the wall by the artist Ludwig Bemelmans, best known for the Madeline children’s books, and listening to Mr. Harris play. She loved Cole Porter, and she would pass requests to the waiter.

The family hired Mr. Harris to play Mrs. McDill’s favorite songs at her memorial service at St. Bartholomew’s Church on Park Avenue on Saturday. It was a sophisticated, poignant and kick-up-your-heels affair, almost like something out of a Cole Porter song. Mr. Harris played “Just One of Those Things” and “I’ve Got You Under My Skin.”

Month-to-month suites at the Carlyle are always expensive, but less so during the summer months, when they cost about $17,000 a month.

“It wasn’t a search for extravagance, but a search for comfort. It wasn’t the inexpensive option, but it was the greatest comfort we could afford, so of course we would do that for her,” said Mr. Gardner, chief executive of the Motley Fool, a financial information company he founded with his brother, David Gardner.

Staffers helped her with chores related to her impending death, said Ms. Tscherne, who agreed to sign as a witness to Mrs. McDill’s will and even ran across the street to get a notary public.

The family hired two attendants from Brooklyn to care for Mrs. McDill: Rose Marie Moore and her sister Shirley Innis. In the evenings, Ms. Moore would sing spirituals for Mrs. McDill.

“She would put her head back and close her eyes and ask me to sing ‘Swing Low, Sweet Chariot.’ She’d say, ‘Give me the long version, Rose,’ ” said Ms. Moore, who took the subway from East New York to stay in the Carlyle with Mrs. McDill.

“It was like low class to high class, going in there,” she said. “I would call her my queen, my majesty, and she called me her princess, and treated me like one.”

Ms. Moore sang “Swing Low” again at the memorial service on Saturday, and family members recalled Mrs. McDill as hardly the demure society type, but more like a Katharine Hepburn character.

After graduating from Georgetown Visitation Preparatory School in Washington, she dreamed of art school, but wound up going to Manhattanville College in Purchase, N.Y., obeying the wishes of her father, H. Gabriel Murphy, part-owner of the Washington Senators baseball team, which later moved to Minnesota and became the Twins.

Mrs. McDill’s first husband was Paul Gardner Jr., a lawyer. After a divorce, she married Jonathan McDill, formerly in charge of cataloging for the Dartmouth libraries. He died in 1998. As a gardener, she took design cues from formal French and Italian gardens and added her own resourceful touches.

She loved the paintings of Henri Matisse and the writing of Mark Twain and Robert Frost. She sold a few paintings but gave away many more. She rarely bothered with computers or cooking.

“It was not that she could not cook, but that she did not,” David Gardner said.

After the memorial service, some of her friends said they were rethinking their own send-offs.

“People came up to me and said, ‘We’re changing our plans for our funeral — we want it to be fun,” Thomas Gardner said. “The only sad thing was that Mom wanted to keep living.”

    And at the End, All the Comforts of the Carlyle, NYT, 22.10.2008,
    http://www.nytimes.com/2008/10/22/nyregion/22carlyle.html

 

 

 

 

 

Oscar the Cat Predicts Patients' Deaths

 

July 26, 2007
By THE ASSOCIATED PRESS
Filed at 4:28 a.m. ET
The New York Times

 

PROVIDENCE, R.I. (AP) -- Oscar the cat seems to have an uncanny knack for predicting when nursing home patients are going to die, by curling up next to them during their final hours. His accuracy, observed in 25 cases, has led the staff to call family members once he has chosen someone. It usually means they have less than four hours to live.

''He doesn't make too many mistakes. He seems to understand when patients are about to die,'' said Dr. David Dosa in an interview. He describes the phenomenon in a poignant essay in Thursday's issue of the New England Journal of Medicine.

''Many family members take some solace from it. They appreciate the companionship that the cat provides for their dying loved one,'' said Dosa, a geriatrician and assistant professor of medicine at Brown University.

The 2-year-old feline was adopted as a kitten and grew up in a third-floor dementia unit at the Steere House Nursing and Rehabilitation Center. The facility treats people with Alzheimer's, Parkinson's disease and other illnesses.

After about six months, the staff noticed Oscar would make his own rounds, just like the doctors and nurses. He'd sniff and observe patients, then sit beside people who would wind up dying in a few hours.

Dosa said Oscar seems to take his work seriously and is generally aloof. ''This is not a cat that's friendly to people,'' he said.

Oscar is better at predicting death than the people who work there, said Dr. Joan Teno of Brown University, who treats patients at the nursing home and is an expert on care for the terminally ill

She was convinced of Oscar's talent when he made his 13th correct call. While observing one patient, Teno said she noticed the woman wasn't eating, was breathing with difficulty and that her legs had a bluish tinge, signs that often mean death is near.

Oscar wouldn't stay inside the room though, so Teno thought his streak was broken. Instead, it turned out the doctor's prediction was roughly 10 hours too early. Sure enough, during the patient's final two hours, nurses told Teno that Oscar joined the woman at her bedside.

Doctors say most of the people who get a visit from the sweet-faced, gray-and-white cat are so ill they probably don't know he's there, so patients aren't aware he's a harbinger of death. Most families are grateful for the advanced warning, although one wanted Oscar out of the room while a family member died. When Oscar is put outside, he paces and meows his displeasure.

No one's certain if Oscar's behavior is scientifically significant or points to a cause. Teno wonders if the cat notices telltale scents or reads something into the behavior of the nurses who raised him.

Nicholas Dodman, who directs an animal behavioral clinic at the Tufts University Cummings School of Veterinary Medicine and has read Dosa's article, said the only way to know is to carefully document how Oscar divides his time between the living and dying.

If Oscar really is a furry grim reaper, it's also possible his behavior could be driven by self-centered pleasures like a heated blanket placed on a dying person, Dodman said.

Nursing home staffers aren't concerned with explaining Oscar, so long as he gives families a better chance at saying goodbye to the dying.

Oscar recently received a wall plaque publicly commending his ''compassionate hospice care.''

------

Science writer Alicia Chang in Los Angeles

contributed to this report.

------

On the Net:

New England Journal of Medicine: http://content.nejm.org/

    Oscar the Cat Predicts Patients' Deaths, NYT, 26.7.2007,
    http://www.nytimes.com/aponline/us/AP-Death-Cat.html

 

 

 

 

 

Sad end to a troubled life

 

Updated 2/8/2007
11:08 PM ET
USA Today
By Ann Oldenburg

 

She came from nothing, but she lived bigger than most.

A small-town girl who was determined to make something of herself, Anna Nicole Smith had the quintessential train-wreck life: intriguing, eye-popping, tragic.

The high school dropout-turned-dazzler, who died Thursday at 39 in a hospital in Hollywood, Fla., was fascinating to celebrity watchers — not because she was an A-list star but because she was an unpredictable blond bombshell who was always in the middle of controversy.

She married a billionaire 60 years her senior and then battled his heirs over the estate, ending with a victory at the Supreme Court.

The world watched as she battled her weight, gaining, losing, then gaining again.

She became a TV star, riding the reality show mania, in a series that offered a candid look at how a celebrity lived.

In a span of days, she gave birth to a daughter, and her 20-year-old son was found dead in her recovery room. Now Dannielynn, 5 months, is without a mother, and her father's identity is uncertain.

Smith's former lawyer Lenard Leeds told TMZ.com it's no secret that Smith "had a very troubled life" and added that she had "so many, many problems."

Still, she flirted and laughed her way through life.

"She was light and fluffy," Tom O'Neill of In Touch Weekly said on CNN late Thursday.

Said Rob Chilton, features director of OK! magazine: "She was a great pop icon, almost like a cartoon character."

Shots of her on red carpets vamping like her childhood idol Marilyn Monroe ran on cable news channels for hours after the news broke Thursday, proof that Smith had achieved her goal of finding a place in the spotlight.

Smith made everyone laugh along with her — and at her — until it just wasn't funny anymore.

At 17, she met Billy Smith, a co-worker at Jim's Krispy Fried Chicken, and they had baby Daniel. Two years later, they divorced. She began working at topless bars in Houston to pay the bills.

Her nickname was "Sweet Cheeks." Though her body was voluptuous, her breasts weren't, and she was allowed to work only the afternoon shift.

Still, she believed she was destined for greater things.

The first order of business: breast implants. In 1991, at 24, she entered a Playboy contest and won. In 1992, she listed her "turn-ons" as "Men who wear braces, cowboys! I also get off on scary movies." In 1993, she was Playmate of the Year. (Founder Hugh Hefner issued a statement Thursday saying he was "saddened" by the news of Smith's death.)

After that, she was offered a modeling job for Guess? jeans.

"I didn't know what Guess? jeans were," she told People magazine in an interview at the time. "I just shopped at Wal-Mart and Kmart and stuff like that."

In 1994 she made her big-screen debut in Naked Gun 331/3: The Final Insult.

Anyone who didn't happen to see that movie had probably heard of her anyway: It was the same time she married oil tycoon J. Howard Marshall II, who was in a wheelchair and more than 60 years her senior. They had met years earlier when she was an exotic dancer.

Though branded a gold digger, she seemed to have found happiness with her husband.

When she was defending her marriage to Marshall, she told In Touch: "Nobody has ever respected me or done things for me. So when Howard came along, it was a blessing."

But the blessing was short-lived. His death less than two years later, in 1995, left behind a fortune estimated at $1.6 billion. She was still fighting for a share of the money when she died.

Smith battled her weight and struggled with other addictions. She acknowledged that she had a problem with prescription drugs.

Her wild behavior was on display on The Anna Nicole Show, her often-bawdy reality series that aired on E! from 2002 to 2003. But it also showed her softer side.

Children and dogs — she had a toy poodle named Sugar Pie — were her true loves. Her son, Daniel, whom she raised as a single mother, was often by her side.

"I don't have any good memories from Christmas when I was a girl," Smith told People in 2004. "So I tried to make them special for Daniel. We never missed a trip to the mall to see Santa to take pictures."

Gabriel Rotello, who directed a 2003 Showtime documentary about Smith, said in People: "Even her most vehement detractors reluctantly admitted that she was a good mother. Daniel was just a really well-adjusted, smart kid."

She was devastated by his death Sept. 10. The cause, as determined by a medical examiner, was an accidental interaction of methadone and two antidepressants.

Last November in an interview with Entertainment Tonight, Smith said: "I'll never accept that (Daniel is) gone. I don't understand why God took him and didn't take me."

Since then, Smith's troubles seemed to double.

She was hospitalized for pneumonia for a week in November. She was sued, along with diet-supplement company TrimSpa — for which she has been a spokeswoman and a model client — in a class-action lawsuit that claimed the company's marketing of a weight-loss pill was false or misleading.

Dannielynn is the subject of a DNA test battle with Smith's former boyfriend, Larry Birkhead, who says he is the father of the child. Smith's longtime friend and lawyer, Howard K. Stern — with whom Smith shared a commitment ceremony on Sept. 28 in the Bahamas — also says he is the girl's father.

Considering her difficult life — and especially her recent past — few were surprised at Thursday's news.

"I am very, very sad, but I am not shocked," Smith's former publicist, David Granoff, told MSNBC. He had seen Smith on television Wednesday, "and she had no spark any more."

But Smith's star tale is far from over.

"This is a massive story," OK! magazine's Chilton says. "We'll now see all the stories about how she died and loads of conspiracy stories and loads of rumors about was it drink or drugs?"

And, he says, her memory will be that of someone who was a larger-than-life celebrity.

"She really was a celebrity. That sums her up perfectly. She had loads of charisma, and she was always doing something crazy. There was always an Anna Nicole Smith story floating around."

 

Contributing: Karen Thomas

Sad end to a troubled life, UT, 8.2.2007,
http://www.usatoday.com/life/people/2007-02-08-anna-nicole-collapse_x.htm#go

 

 

 

 

 

 

 

 

Daughters of Dominggus Pasalbessy

with Henry Fersko-Weiss,

who helped guide them

as Mr. Pasalbessy neared death.

 

Photograph:

James Estrin/The New York Times

 

For the Families of the Dying,

Coaching as the Hours Wane

NYT

20 May 2006

http://www.nytimes.com/2006/05/20/us/20vigil.html

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Mr. Fersko-Weiss, a hospice executive,

joined the Pasalbessy daughters

for a "closure session"

at the apartment of one.

 

Photograph:

James Estrin/The New York Times

 

For the Families of the Dying,

Coaching as the Hours Wane

NYT

May 20, 2006

http://www.nytimes.com/2006/05/20/us/20vigil.html

 

 

 

 

 

 

 

 

 

 

 

 

 

 

For the Families of the Dying,

Coaching as the Hours Wane

 

May 20, 2006

The New York Times

By JANE GROSS

 

Greg Torso's death announced itself with a long exhale and then silence, as the breath literally left his body. His mother had been told to expect this, so she was not scared.

Ms. Torso had worried that an undertaker would barge in moments after her 42-year-old son died, before she had had time to say goodbye. She had been assured she could spend as much time with the body as she wanted.

Could she bathe and dress him? Save a lock of his hair? Commemorate his passing with wine and reminiscence at the bedside? All of that was fine, she had been told, setting the stage for a death that she later said had left her "on the edge of euphoria."

Ms. Torso was coached and consoled through the final days and hours of her son's life, a rarity even under the umbrella of hospice, which for three decades has promised Americans a good death, pain-free, peaceful and shared with loved ones at home.

But there is a growing realization that hospice has its limitations. Doctors, nurses, social workers, clerics and volunteers are rarely there for the final hours, known as active dying, when a family may need their comforts the most.

Now those final moments are a focus of new attention as hospices broaden their range of services, inspired by a growing body of research on the very end of life. More are encouraging the calming properties of music, meditation, aromatherapy and massage for both patients and families. Some are increasing the training for so-called 11th-hour companions who families can request be with them.

Holding a dying person's hand may be frightening for a loved one alone at the bedside. Relatives and friends may not know that hearing is the last sense to go, and neglect to soothe the patient with a steady, reassuring murmur. Leaving the room briefly may mean missing the moment of passing and always carrying that regret.

"These final moments matter, but often, when families and patients need us most — to explain the process, calm the situation, take away the negative energy and allow them to be more present — we aren't there," said Henry Fersko-Weiss, vice president for counseling services at Continuum Hospice Care in New York City, which has a new program that has been keeping vigil with the dying and their families.

The American hospice movement has grown from one program in 1974 to 3,650 in 2004, serving eight million Americans, according to the National Hospice and Palliative Care Organization. And more people are expected to choose hospice care as it extends its reach into hospitals and nursing homes, where palliative care is not routinely available. At the same time, those who seek aggressive treatment up to the end are welcome at hospice programs that once turned them away but that are now "open access."

Despite all these changes, most people, in fear or denial, wait until the last minute to enroll. That robs them of the preparation that was so vital to Greg Torso's mother, Carol, and that hospice leaders, like Andy Duncan of the national organization, say should be routine.

"Actually coaching and counseling people through the time of active dying," Mr. Duncan said, "is something we hope to convince every hospice in the nation to do."

 

Preparing

The Torsos were the first to use Continuum's vigil program, which has coached and consoled a dozen families in its first year.

Greg had survived 15 years with AIDS and related cancers. When his doctor said further treatment would be useless, Mr. Torso enrolled in hospice, and welcomed extra help from Mr. Fersko-Weiss and 29 specially trained volunteers who call themselves doulas.

That is a Greek term for women who serve, more commonly at home births to assist both midwife and mother. But the guiding philosophy is the same and borrows from Eastern religions: to honor the end of life as well as the beginning.

Mr. Fersko-Weiss is a gentle man who insinuates himself slowly. When he first described the dying process to Ms. Torso, she found it hard to listen. So they shifted gears, talking about Greg's life and looking at photos of him in better days.

On a subsequent visit, Ms. Torso sought reassurance that she would not "just fall apart." On another, Mr. Fersko-Weiss told her there might come a moment when she would have to give her son explicit permission to die. She did — "You can go, Greggy. You can go whenever you want" — toward the end of what would be a 68-hour vigil, involving 10 doulas (pronounced DOO-lehs).

Gwen Lee's needs were different as she prepared for the passing of her eldest sister, Vivienne, who died at 60 after a 10-year battle with brain cancer.

Years of pretending that all was fine had given way, for both of them, flight attendants from Ireland, to acceptance. As Gwen put it, "We were prepared for the end of her life, but no one else was." Some friends and relatives began second-guessing the decisions, arguing at Viv's bedside, arriving uninvited and creating a "soap opera," Gwen said, "where we were left trying to keep them happy."

It is not uncommon, hospice workers say, for those not involved in day-to-day care to bring their own fears and conflict to the deathbed and inadvertently become a burden. Into the tumult came Mr. Fersko-Weiss, a Buddhist whose religion says that "what happens to the soul is partly determined by how it leaves this life." The scene of death, he said, is a "sacred space," and the doula's job is to protect it.

To that end, he and Gwen, 51, considered moving Vivienne, and her two beloved cats, to an in-patient hospice where they could control who visited. Just knowing there was a fallback position reassured them.

"It made all the difference," Gwen said. "Henry pulled me out of the chaos and kept my head on the goal."

 

The Vigil

Chloe Tartaglia, a pre-med student, yoga teacher and former birth doula, had never seen anyone die when she volunteered for the vigil program.

She learned the signs of imminent death in her 16-hour training program, how to match her breathing to the patient's and use visualization and aromatherapy to calm everyone in the room. On the subway, headed to her first case, Ms. Tartaglia, whose father was a hospice physician, concentrated on her goal: to be "like water and flow to the place where there's need."

She found herself in a shabby apartment near New York University. A tiny woman lay in bed, wasting away from "failure to thrive," Ms. Tartaglia had been told. The woman's husband was terrified, venturing into the room only to give her morphine, as he had been instructed by hospice nurses.

The woman's daughter, none too fond of her stepfather, was at work, having left behind a phone number. Ms. Tartaglia pulled a chair to the bedside.

For five hours, Ms. Tartaglia said, she sat beside the woman and held her hand "with intention," as she had been taught, enclosing it between her own. She had no sense of time passing until her shift was about to end.

"I told her I'd be leaving soon but that someone else was coming and she wouldn't be alone," Ms. Tartaglia said.

Five minutes later the woman died.

Ms. Tartaglia called the daughter, who arrived calm and efficient, ready for the logistics that follow death. "I can't deal with him," she told Ms. Tartaglia as the old man keened.

Ms. Tartaglia guided him into the kitchen and fixed tea. "You deal with yourself and your mom," she told the daughter. Ms. Tartaglia followed her heart and suggested a deathbed ritual. As she slipped from the apartment, the daughter was combing her mother's hair.

There would be more vigils for Ms. Tartaglia. One of the most memorable, she said, included the chance to hear Gwen Lee take her sister on whispered journeys to places Vivienne had most loved in the days when being a stewardess was glamorous.

With one of Vivienne's cats at her head and the other draped over her legs, Gwen would set the scene: An overnight flight to Africa. Glaring sun as the cabin doors open. Days between flights to romp at the beach with captain and crew.

While Gwen soothed her sister, Ms. Tartaglia lighted candles. She massaged Gwen's feet, helped choose the music for Vivienne's grand exit, Sarah Brightman singing "Time to Say Goodbye."

Ms. Tartaglia's shift ended three hours before Vivienne died. As she left, Ms. Tartaglia removed the oxygen mask that was intended to make Vivienne more comfortable but was chafing her face.

 

The Aftermath

A month to the day after Dominggus Pasalbessy died, Mr. Fersko-Weiss visited the three daughters who had cared for him. This was a formal opportunity for Pat Jolly, 62, Helen Santiago, 58, and Anita Pasalbessy, 55, to review their experience. After a death, Mr. Fersko-Weiss told them, "something said or not said, something you wish you had done differently, can stick inside you like a splinter."

The lights were low in Ms. Pasalbessy's Riverside Drive apartment, and Mr. Fersko-Weiss suggested a CD their father had loved, music from the South Moluccan islands, now part of Indonesia, the native land he had left as a teenager on a tramp steamer. The sisters sat for a brief meditation, letting the bustle of their day be replaced with images of their father, who died of lung cancer in the same bed where his wife had died a dozen years earlier.

All three described feeling peaceful and reverent at the time of his passing. It was like being "inside a cocoon," Ms. Pasalbessy said, "just me and my sisters, and Daddy, all together, in a place where nothing bad could touch us."

Only when pressed did each recall her particular moment of distress.

Ms. Pasalbessy agonized that she had compromised the independence of a man who "never wanted to be fussed over." Mr. Fersko-Weiss reminded her that eventually her father had stopped resisting his daughters' ministrations and had told them, "You're good girls, such good girls."

Ms. Jolly's concern was whether they had adequately medicated him. But her father's mantra had been "mind over matter." Perhaps, Mr. Fersko-Weiss suggested, he chose a measure of pain, rather than unawareness, as an assertion of strength.

Ms. Santiago had trouble forgetting the sisters' squabbling as they tried to dress him, three strong-willed women each with her own idea of how to get his arm through a pajama sleeve. "He had to have felt our tension, our nervousness," she said. "But that's when you guys walked in and everything fell into place."

Three doulas were with the family, in shifts, from dusk on April 9 until late afternoon on April 11. At 3:10 p.m., after a telltale rattling in his chest, Mr. Pasalbessy let out a breath. Then another, as two tears trickled down his cheek.

"It was like we could hear you talking to us," Ms. Jolly told Mr. Fersko-Weiss. " 'You'll see this. You'll hear a certain breathing pattern.' This dying was such a wonderful experience, if death can be that. And it's because there was no fear of the unknown."

For the Families of the Dying, Coaching as the Hours Wane,
NYT,
20.5.2006,
http://www.nytimes.com/2006/05/20/us/20vigil.html

 

 

 

 

 

The Horrid Death

of Milton Rocano,

Unseen and Unnoticed

 

April 27, 2006
The New York Times
By MICHAEL WILSON

 

Few saw Milton Rocano during the short time he lived in this city, and no one saw him die, a death horrible in its circumstances and its sheer isolation, its invisibility.

Mr. Rocano, an employee at a privately owned recycling-transfer station in Greenpoint, Brooklyn, climbed into the rear of an empty open-top tractor-trailer on Saturday morning and was buried alive in an avalanche of debris dumped by a co-worker who did not know he was there, the police said. The truck later dumped the debris, and Mr. Rocano's body, in a landfill in Suffolk County, where it was found three days later, after the company and the police had tracked it there.

Even by the standards of New York City, where anonymous people often die in extraordinary ways, this death stands out for all the little things that did not happen: the worker who killed Mr. Rocano by all accounts never knew it. If Mr. Rocano did shout, no one heard him in the din. At the company's offices on Anthony Street, a large window looks straight down into the area where the truck had been. But no one was looking through it on Saturday morning.

A camera recorded the accident, but the images were not seen until two days later. Mr. Rocano, 20, was not missed as the shift changed. No one noticed that he had not used his time card to punch out in a dusty, harried corner of Brooklyn, rumbling with Brooklyn-Queens Expressway traffic from above and big trucks that come and go all day, a place where it is as hard to breathe as it is to hear.

"It's part of the city that people don't see," said Paul D. Casowitz, a lawyer for the recycling center, City Recycling Corporation. "The gritty part. Everyone sees the trucks. No one wonders where they go."

Mr. Rocano's sister Maria Rocano said as much herself yesterday, but her words were packed with fury: "It's like he was a dog that was just finished off."

Mr. Rocano was the fifth of six siblings born and raised in Ecuador, and the third to move to New York City to earn some money, arriving six months ago. He shared an apartment with roommates in Sunnyside, Queens, and spent most of his free time with his sisters, Maria and Ana Rocano, who live in Brooklyn. When he was not with them, they said, he was probably in church, a man so faithful that he was known to write letters to God.

"He always included God in everything," said Ana Rocano.

One of his roommates was Miguel Coronel, 34, a livery-cab driver from Ecuador. "Oh, what a nice guy," Mr. Coronel said in an interview at his apartment yesterday. "He never drinks, he never goes outside. A quiet, nice guy."

Mr. Rocano quickly found work at City Recycling, just across Newtown Creek from his home in Queens. It is a bustling transfer station, where debris — mostly from construction sites — is dropped, sorted and trucked out again. No garbage or chemicals are dumped at the site, and nothing stays for long.

Tractor-trailers wait in line to back into one of the company's two loading and unloading areas, where a device called a grapple snatches debris from the full trucks and drops it into a pile. On clear days, workers spray the piles with water to keep the dust down. Truck drivers waiting their turn eat quiet lunches behind the wheel.

When a truck is emptied, workers in bright orange vests and hardhats climb up the sides and drop inside to clean up the scraps. That was Mr. Rocano's job. His first impressions of the place were not good and did not improve.

"It was tiring and he was exhausted, and he spoke of that," said a friend, Luis Amon, 24. "It was dirty work he did not want to do forever."

As he did on every day that he worked, he left his apartment at 5 a.m. on Saturday. He died about six hours later, Mr. Casowitz said, basing his estimate on a time stamp on one of the company's several surveillance cameras, which read 11:07 a.m. Mr. Casowitz said he had seen the recording, and he described it as follows:

Mr. Rocano, for reasons Mr. Casowitz said were unknown, climbed into an empty truck, which is not standard procedure. No one saw him enter the truck.

A large front-end loader approached. "The loading commences, and he's struck with debris," Mr. Casowitz said. "You see him in there, and the debris. He's covered in debris." The loader operator, who could not have seen inside the truck, dropped two more loads, and the truck left. The company did not identify the loader operator, but he is "understandably very upset," Mr. Casowitz said.

When Mr. Rocano did not come home, his worried sisters visited the company on Monday, they said. Ana Rocano said a manager told her: " 'Just wait. Wait. He's out drinking or with a girlfriend somewhere and he'll show up.' " Mr. Casowitz said that he could not confirm or deny the statement, but said that the manager clearly did not know that there had been an accident.

The sisters called the police to report Mr. Rocano missing, and investigators visited the site on Monday morning. An office manager at the company later reviewed the video, and when it became clear what had happened, called the police back to the site, Mr. Casowitz said. The truck and its load were tracked to a landfill on Spagnoli Road in Melville, N.Y., where the body was found shortly after noon on Tuesday.

No criminal charges have been filed, and the company does not expect any, Mr. Casowitz said. The Occupational Safety and Health Administration is investigating, a spokesman said. Work at the station continued yesterday.

Mr. Rocano's family plans to return his body to Ecuador for burial. Mr. Casowitz said the company would like to help defray the cost of the funeral. But, he said, no one at the company knew how to reach Mr. Rocano's sister.

 

Mick Meenan contributed reporting for this article.

    The Horrid Death of Milton Rocano, Unseen and Unnoticed,
    NYT, 27.4.2006,
    http://www.nytimes.com/2006/04/27/nyregion/27garbage.html

 

 

 

 

 

A living message

from the valley

of the shadow of death

 

23 July 2005

The Daily Telegraph

By Charles Moore

 

There has been a great deal of death in the news, so I apologise to readers for what might look like an entire column on the subject. In fact, though, it is about life.

In 1949, a Jew from the Warsaw ghetto, called David Tasma, lay dying of cancer in London. He had no family, but he was comforted by a tall, shy, young woman almoner (hospital social worker), who was more than half in love with him. He left her everything he had, which was £500, and told her that this would make "a window in your home".

In 1967, that home took the form of St Christopher's Hospice in Sydenham. There are now more than 200 hospices based on its model in Britain, and the hospice movement is active in more than 120 countries. The woman almoner was called Cicely Saunders.

She died last week, of a cancer from which she had suffered for several years, in the home that Tasma's bequest inspired. Dame Cicely has attracted admiring obituaries, of course, but I am not sure that people have quite noticed the scale of her achievement.

To the dying Tasma, Cicely recited the 23rd Psalm, the favourite for funerals. It says, "Yea, though I walk through the valley of the shadow of death, I will fear no evil." Almost all of us, when our time comes to take that walk, fear evil very much indeed. She observed this, and worked out how to minister to that fear.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Illustration: Jas

 

A living message from the valley of the shadow of death

The Daily Telegraph

23 July 2005

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Dame Cicely's gift was to unite the physical with the spiritual. She started as a nurse and had to give that up because of back trouble and become an almoner. Then, in her thirties, she returned to school to become a doctor.

She was therefore an entire professional health care team in one. When she was a nurse during the war, she was horrified by how patients had to "earn their morphine" by exhibiting unmanageable levels of pain. Doctors shunned it, because of fear of addiction and because they thought it did not work by mouth.

In research which she began in the late 1950s, Cicely Saunders discovered that pain could be managed by oral drugs, and that if, in terminal cases, people were given strong analgesia before the onset of pain, they could be relieved with relatively small doses, and without addiction.

This was a purely medical discovery. But with it, she developed the concept of "total pain". She saw that people's suffering as they approached death might involve everything about their lives - their fear of extinction or punishment, their anxiety for the family they were leaving, their remorse, their sense of meaninglessness.

This was real pain, which heightened the physical agony, just as the physical agony heightened the other fears. Her answer was to listen to the dying, on the grounds that each death, like each life, was unique: "You matter because you are you, and you matter to the end of your life."

Common sense, you might say, common humanity. Yet it went against the prevailing medical view. When he set up the National Health Service, Aneurin Bevan declared that he would "rather be kept alive in the efficient if cold altruism of a large hospital than expire in a gush of sympathy in a small one".

That coldness was seen by many as a virtue in itself. Death was a form of inefficiency and, for a doctor, a sort of failure, since it could never be "cured". Dying was not part of the vision of the NHS. Recent evidence about what happens to old people in so many hospitals today (see Panorama's programme this week) suggests that it still isn't. This is a great moral, human disaster.

Dame Cicely understood that the "gush of sympathy" or, rather, the calm, steady flow of the stuff was just as much a part of the ministry of health (as opposed to the Ministry of Health) as was technical expertise. She sought "the match between heart and mind - research, training, understanding, had to be matched with the vulnerable friendship of the heart".

Almost as bad as sheer neglect of the dying was the belief - convenient for professionals, and also for those families who didn't want the difficult conversations - that the approach of death, particularly in the form of cancer, should be concealed from the patient because it was unbearable.

It wasn't the kindest thing to jolly people along, Dame Cicely thought: it was a failure to confront the truth, to acquire "the full understanding of what is happening". Again and again she found (and she went on personally ministering to the dying right into her seventies) that if people had the chance to work through their perplexities, they could face what was coming.

She particularly remembered one man who had been in great agony of mind, but had at last resolved it, about an hour before he died: "Suddenly he looked amused." Talk mattered a great deal, she believed, but so did silence, and she emphasised how important it was that people should have the right things to look upon - art by their beds, design that soothed, a chapel to pray in.

The phrase "being there for someone" is now a cliché of pop-psychology, but it means something, and Dame Cicely thought of it. She derived it from Jesus's request to his disciples in the Garden of Gethsemane the night before his death: "Watch with me" (an injunction which they disobeyed).

I did not know Cicely Saunders. I gather from people who did that she had the mental toughness which is to human goodness what physical fitness is to athletes. You and I read thrillers in the bath: she read spiritual classics.

She said that her favourite pastime was "a sacred cow shoot". She was formidable, could even be forbidding. She stared at you, unblinking. People who disagreed with her sometimes got short shrift. She fitted the Florence Nightingale, Mother Teresa model of fierce devotion to the great task.

But when she spoke of the "vulnerability of the heart", she knew what that meant, too. She had loved David Tasma, and it was his loss that inspired her. When doing her research into pain control at St Joseph's Hackney, she fell in love with a second Pole, who died there. She eventually married a third Pole, Marian Bohusz-Szyszko, an artist, who died in 1995. "Total pain" was something she had seen, had felt. People who watched her die testified that she had overcome it.

Because of demography and medical advance, there has never been a time in our civilisation when death has come so stealthily and so late to so many. Compared with our forebears, we are privileged. But as is often the case with the privileged, we are also frightened.

So we more and more seek euthanasia, which in turn only increases fear. We think that we can take some bypass which avoids the valley of the shadow of death. No, says Cicely Saunders: we're all on the same journey; let us make it together, to the very end.

Information appearing on telegraph.co.uk is the copyright of Telegraph Group Limited and must not be reproduced in any medium without licence.

A living message from the valley of the shadow of death,
DT,
23.7.2005,
http://www.telegraph.co.uk/opinion/main.jhtml
xml=/opinion/2005/07/23/do2301.xml&sSheet=/opinion/2005/07/23/ixopinion.html

 

 

 

 

 

 

 

 

 

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Related

 

The Guardian > Death and Dying        UK

https://www.theguardian.com/society/death-and-dying