“We don’t let anyone go alone on the last journey,” Sister Marie said. (…) “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.”
Articolo del NYT su una comunità di religiose in cui la malattia e la morte sono all’ordine del giorno, ma la morte non viene nascosta, né temuta, né l’infermità viene nascosta o ritenuta la fonte di una perdita di dignità tale da richiedere di morire.
New York Times – July 9, 2009
Months to Live – Sisters Face Death With Dignity and Reverence
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.”
Copyright 2009 The New York Times Company