[First in a two-part series on death and dying in an Albany, New York hospice]
Agnes Wickham’s hands are clasped together as they might have been when she made her first Holy Communion. Only the wrinkles and distended veins betray the passage of time. Head bowed and eyes shut tight, she speaks her prayer confidently, in a gravel whisper:
“Please, Lord, let me stay here just a little longer. Not forever, Lord, but only for a day or two, by my dogs, in my home. That’s all, Lord.”
The only light in the narrow cell of her living room in North Albany comes from a shaft of mid-afternoon sun angling its way through a smoky glass window.
On the wall facing Agnes hangs a large portrait of her parents on their wedding day in 1918. She looks up from her prayer as if into a mirror, and the shadows fall around her dim eyes, accenting the skin that fits tightly around the bones and hollows of her face.
As she talks with her priest, Rev. R. Adam Forno, her fingers absently trace the crucifix that hangs down from her neck. With her other hand she strokes the small dog asleep in her lap.
Some days are harder than others, and yesterday was a hard day for Agnes. Her body ached; her heating bill came and it was far higher than she’d planned for; and a foul-up at the Social Services Department meant that she was denied her normal ration of food stamps.
“I was really feeling sorry for myself,” she tells him. “I just sat here and cried; I felt like somebody had just beat me up.”
One day soon this room, this place she wants to linger in a while longer, will be empty. There will be no one to fill the well-worn furrows in her armchair; no one to dote over her two precious dogs. All the bittersweet things which make up a life remembered will fade as slowly and certainly as her now failing eyesight, and soon she will be buried next to her husband in the cemetery at Sacred Heart Church, where she was baptized 73 years ago.
Agnes is dying of cancer in her home, with aid and comfort provided by St. Peter’s Hospice of Albany. At a time when the terminally-ill like Agnes are offered “suicide machines” and manuals on how to make their “final exit,” St. Peter’s Hospice is keeping clear another path for the dying to walk.
Preserving the ancient Christian practices of hospitality and care for the sick, St. Peter’s Hospice helps those who can’t be cured to die at home, safe with their memories, in the arms of their loved ones.
A New Way of Dying
The overwhelming majority of the nation’s terminally ill patients—about 80 percent— still die in hospitals.
But, with more and more people worried that they might be kept alive artificially by burdensome technologies, and with legal changes that make hospice patients eligible for Medicaid, the number of people choosing the hospice alternative has doubled in the last decade.
Last year alone, 207,000 people died in the care of the America’s 1,800 hospices, according to the National Hospice Organization. No one has a count on how many of those hospices are run by Catholic institutions, but St. Peter’s has earned an international reputation as one of the oldest and most innovative in the world.
Like other hospices, St. Peter’s is concerned with pain management, relief and fostering a peaceful death, according to Dr. Michael Murphy, the English-born physician and psychologist who founded it in 1979.
What makes St. Peter’s unique is its Catholic perspective, he maintains. It treats the “person as a whole” — as a creature of body and soul, connected in relationships to God and loved ones.
More than a decade ago, frustrated by his practice in Boston and intrigued by the research into death and dying done by his friend, Dr. Elisabeth Kubler-Ross, Dr. Murphy returned home to study at the pioneering St. Christopher’s Hospice in London.
The insights he gleaned, he imported to America, establishing St. Peter’s Hospice as a fully separate and independent unit of St. Peter’s Hospital, which is part of the health care network run by the Religious Sisters of Mercy.
Today, Dr. Murphy’s hospice team includes doctors, nurses, social workers and chaplains, along with scores of dedicated volunteers. All have been handpicked, selected as much for their medical expertise as for their desire to share in the sufferings and joys of the dying.
Most nurses and doctors are too hard-boiled to work in Dr. Murphy’s hospice, and the staff he has plucked up and transplanted from a variety of backgrounds is a truly colorful bunch of characters.
Some are refugees from traditional hospital work, seeking a more personal approach to healing and medicine. The main chaplain, Sister Jean Roche, an energetic nun who is apt to recite entire lyrics from an obscure 14th-century poet or expound on the meaning of ‘giftedness.” Among the social workers is Don Paul Shannon, who has a penchant for floral print ties whose resume includes stints as an off-Broadway actor and as a Catholic school teacher in Harlem.
Watching over this tight-knit and variegated brood is Dr. Murphy, who comes across as a sort of Oxford bard with his tousled hair, weather-beaten face and tweed jacket.
And he commands the loyalty of benevolent patriarch. In recent interviews, one of his charges referred to him as “the father of hospice,” and another as “part poet, part prophet, part priest.”
A recent team-meeting found Dr. Murphy shifting easily from shop-talk about pain medications and family neuroses to a philosophical discourse on the meaning of “sin” and the need for a “rediscovery of soul.”
Each week, Dr. Murphy leads a two hour “bereavement” session where team members weep openly and share stories about hospice patients who have recently died. There is also weekly “process,” a kind of group therapy session in which staff members discuss how their lives are being touched or disturbed by their work with the dying.
Such therapeutic rituals and the family-like atmosphere are vital to the identity and work of St. Peter’s Hospice, Dr. Murphy said in an interview.
He envisions his team as “surgeons of the soul”—practitioners of the ancient art of healing, an art that he says was long ago lost by a medical profession grown increasingly concerned with high technologies and bottom lines.
What might be called the philosophy of St. Peter’s Hospice, is an eclectic ecumenical stew, stocked with the latest advances in pain relief and psychotherapy, seasoned with rituals and symbols drawn from Native American religions, and stirred through by a Christian faith that meaning and redemption can be found in pain and suffering.
The hospice strives to step over religious and denominational boundaries to embrace the spiritual dimensions and needs in every person, says the chaplain, Father Forno.
He describes his work as a sort of fellow-traveling with the dying person on a pilgrimage that will end beyond the grave. But it is also something more. “It is my privilege,” he explained. “I feel blessed, when I serve the sick and the dying, and also their families, because I encounter Christ who is present in their sufferings.”
Father Forno finds that for many patients and their family members, he is the first encounter they have had with the Catholic Church since childhood.
Some, who haven’t crossed the threshold of a church in as many as 40 years, come to him seeking reconciliation, a way to return home to the Church that they were baptized in.
“They are asking me, ‘Is it too late? How can I come back to the sacraments?’,” he said. “My job then is truly one of evangelization at its deepest, grassroots level.”
Death in The Family
Death, like life, is a family affair, Dr. Murphy believes.
And the hospice’s “family approach” is rooted in Dr. Murphy’s own not always happy upbringing in a family he describes as troubled by alcoholism, loneliness and an inability to communicate emotions.
In his years practicing medicine and psychiatry, he discovered that long-standing and unspoken family troubles often reach a peak when a family member is about to die.
That’s why the centerpiece of the hospice program is the opportunity for families to take part in what’s known as “the family meeting.” These lengthy therapy sessions, led by Dr. Murphy with the patient’s family and friends, often turn into blessed moments.
Dr. Murphy quotes from memory a dying man’s farewell to his young grandchildren in one of these sessions: “Children, I have cancer and it’s nobody’s fault. It just happens. I am going to die and won’t be there to see you grow up. But I want you to know that you have each been a joy in my life, and you will always have my blessing and my love.”
St. Peter’s also becomes a kind of surrogate family for those like Agnes Wickham, who has no family to speak of, except for her two dogs, Fluffy and Tinker Bell.
In addition to tending to her daily medical needs, hospice staff has helped her to prepare her will and to arrange for her funeral.
She fears losing her eyesight completely before she dies. But she said in a recent interview that her only unfinished business is finding someone to care for her beloved dogs. She still cooks them gizzards and livers each evening.
She talked wistfully of the man she was wed to for nearly 60 years, who died last year: “He was my only fella, and we got married when I was 14. We had such a good marriage.”
There is serenity in her voice as her old hands fingered the crucifix around her neck.
Looking up at the portrait of her parents, she continued, remembering with faith a life almost passed:
“The Lord has done so much for me. He has let me be home here. When they first told me about my cancer, I cried. I didn’t want to die. But the Lord’s let me be around for a long time. I’m ready. I had a good life. And I’m going to be with my mother and father—how I miss them—and with my husband and my son. I’ll be better off. You know, He knows the day you’re born and the day He’ll call you home.”
Originally published in The Evangelist (April 9, 1992) (c) David Scott 2003. All rights reserved.
In the Major Cancer Dept.
By David Scott
[Second in a two-part series on death and dying in an Albany, New York hospice]
Fragments from the pages of his journal are all that Bob Stelling left behind when he died of brain cancer last year in the care of St. Peter’s Hospice in Albany.
The words and cartoonish pictures that he etched into the marble composition books were his last testament to a hard-lived 43 years which brought him as a Marine to the killing fields of Vietnam and home again to East Berne, N.Y., where he died a truck driver with a load full of faith and painful memories.
To read the diary entries of his final months is to rummage with him through his hurts and dreams, to find poetry in his pain. Among the many streams of his consciousness in those pages are wry musings on a life cut short and songs of love to a fiancee he’ll never get to wed.
There are moments where Bob is weighed down and pulled apart by loneliness, as in this passage on a page he had titled, “Major Cancer Dept.”
“To Blow Up: My eyes are tearing but not running down anywhere ‘cause if they were to run down somewhere I think I would follow just to go somewhere. It’s a lonely world inside. . . . One can conquer but . . . just how much can a person defeat? I realize each person has a cross to bear. “
Other passages are filled with the pathos and regrets of one who wishes he’d found out sooner the meaning of family, love and life:
“Darn, I miss my sister…. I’m afraid, yes I’m crying…afraid I won’t see her again…. I’ve learned so much about family. Wished I had learned more when I was healthy.”
Through it all, there is a forceful conviction that there is a meaning and purpose to his disease. In one passage, written last May, he plays on the words “no” and “know”:
“People have a place to be. Where mine is going to be I have no idea and for what reason I have know idea. But I’m going to take the trip.”
The Art of Dying
Bob Stelling’s journal is a window into the little-known world of St. Peter’s Hospice and the traveling art of dying that is practiced and taught there.
“There’s a lot of suffering and pain for everyone going through the process,” admits Don Paul Shannon, a hospice social-worker.
For many the inclination would be to recoil from the heat of bared emotions, but it’s Shannon’s job to plunge into the raw hurt of people who feel cheated by life.
But, in their vulnerability and anger, Mr. Shannon said he often finds a certain largeness of the human spirit.
“I am often privileged to be present for some powerfully tender moments—when things happen that feel almost miraculous,’’ he said. “A change happens or some words are spoken. It’s tremendous; it opens your heart and gives you strength.”
Since St. Peter’s Hospice opened its doors in 1979, more than 4,000 persons have died in its care, 600 or more last year alone, according to Molly Poleto, a patient intake nurse.
Typically hospice patients are in declining health and have been given a year or less to live by doctors. The overwhelming majority—more than 80 percent—will die in their homes. For the few who need for intensive care, the hospice maintains a “Hospice Inn,” a 10-bed ward on the fifth floor of St. Peter’s Hospital.
Hospice provides medication for pain relief and nurses, social workers and chaplains for the spiritual and emotional aches afflictions. There are also bereavement support groups for family members of persons who have died in hospice, including a special group for those who have lost loved ones to AIDS.
But what’s most striking about the hospice experience, Ms. Poleto and others say, is how patients’ melancholy and rage over their sullied lives can often be overcome by gestures of forgiveness and the simple joy of getting to know a loved one for the first time.
“When you are working with people who are dying, they are teaching you how to live,” said Cheryl Malone, a nurse who coordinates St. Peter’s volunteers and its day-care program.
Over the years the hospice has attracted a far-flung crop of loyalists and volunteers.
There’s the state-government worker whose wife died a long death in hospice; he still comes over each week to help out and to share lunch with hospice staff and patients. There’s Harvey Bain, a retiree whose wife is confined to a nursing home with acute Alzheimer’s disease. For the past ten years, Harvey has played piano at the hospice’s Friday luncheons, laying down chunky blues rhythms or the lilting melodies from carnivals and Broadway shows.
The hospice is a school of love and religion, according to Sister Jean Roche, who has been St. Peter’s hospice chaplain almost from the beginning.
“The root meaning of religion is ‘to bind’ or connect—and that’s the heart of our hospice religion,” she said. In those acts of love and binding she finds daily “manifestations of God’s presence and healing power.”
A Tune to Close The Show
Molly Poleto has known these moments, too.
A few years back, she recalls, she and Mr. Shannon helped to calm a German immigrant stricken with both cancer and Parkinson’s disease. Confused by his illness and the constant jockeying between institutions and hospital beds, the man had withdrawn completely and refused to speak.
From his days off-Broadway, Mr. Shannon had remembered a few German show tunes. So started singing to his frightened patient.
“I sang him a song about the approaching of spring,” Mr. Shannon recalled. “He looked at me in amazement and, as I began the second verse, he started singing. He knew the words.”
Ms. Poleto added: “That man sang with a voice that had to come from the very depths of his soul. There was a light in his eye that I’ll never forget.”
The man died peacefully a few days later.
As many breakthroughs as there might be, there are as many occasions where hospice is only the final stage of a life of faith.
Such is the case of Marie Dorries, a 64-year-old daily communicant of Sacred Heart parish in Watervliet, N.Y., who will die any day now.
“Some people are afraid that death means the end,” she said. “It’s not the end. I feel that my whole life is being led by God — I see Him in everyday things that are happening. I feel there’s something we’re going to—another life. “
Marie’s simple and confident faith expresses well the philosophy of St. Peter’s Hospice. It’s a faith that Bob Stelling too came to.
In one of his final journal entries, he wrote:
“When I come back—which I will—I hope to come with much more wisdom and news that there is another world, but of peace, disease-free, a world of learning. You see, one has to be educated to enjoy life.”
This week, another patient will pass quietly into the next life with care and guidance from St. Peter’s Hospice. A single flower will be laid on her bed, a candle will be lit and her life will be remembered in prayer and storytelling by the hospice staff.
It’s fitting that down the hall, through a double-door, is the hospital maternity ward—as easy as saying hello and good-bye.
It is a hard lesson to learn that. “Hospice is a metaphor,” hospice staff repeat in conversation. Not a metaphor for dying, but for the way people should live—one day at a time time, treasuring every moment, waiting to be born again to new life.
Originally published in The Evangelist (April 16, 1992)
© David Scott 2003. All rights reserved.
