Recently, on a gloriously sunny, spring-like morning, author Marietta Pritchard, stood in the kitchen of the Hospice of the Fisher Home in Amherst, fixing herself a cup of tea, talking about how she would like to die.
“I’ve become very committed to this place, and what goes on here,” she said, stirring in a dollop of honey. “A nursing home is not a place I would like to be, but this is someplace where I would. Like the title of the book.”
This winter Pritchard, who has been a volunteer at the Fisher Home since 2007, published her second book, “The Way To Go: Portraits of a Residential Hospice” (The Impress Group, 2015) about her experiences at the hospice.
A former editor at the Daily Hampshire Gazette, she once worked as an obituary writer at the newspaper as well and now writes a monthly column for Hampshire Life magazine.
“The Way To Go,” is a series of miniature portraits of several of the patients Pritchard took care of and the various staff members she encountered at the hospice. Woven throughout are excerpts from Pritchard’s journal, which she started when she began volunteering at Fisher Home, and chapters that focus on the history of the place. Each story adds to the mosaic Pritchard paints of this particular residential hospice, which in turn sheds light on the larger hospice movement.
“Hospice seeks to normalize death,” she writes. “But for many people in our culture, death is never seen as normal. It is the unspeakable.”
Pritchard’s book tackles questions most would prefer to avoid: How would we like to die? What do we consider a good death? What does a grieving family need?
The goal, she said, is to provide patients with the best death possible.
A little island
Pritchard’s journalistic reporting enhances her storytelling in “The Way To Go.” One chapter tells the story of Howard Sachs, a former patient who struggled to accept that he was dying and needed hospice care. Another chapter discusses Sara Wolff, who checked herself into the Fisher Home after deciding that her medical treatments would not cure her illness.
In part because their services are not fully covered by Medicare and Medicaid, many hospices are part of nursing homes or hospitals, some of which are for-profit businesses, Pritchard said in an interview that recent morning at the Fisher Home. Some patients receive hospice care in their own dwellings. But Fisher Home is run independently, and so far has resisted being swallowed up by a larger operation, she said.
Balancing the books, however, is never an easy task. A major fundraising source for Fisher Home is its consignment store on University Drive in Amherst.
Pritchard describes the Fisher Home as little island. “It’s a really admirable, independent operation. This is an amazing place, a happy place,”
The hospice is located on North Pleasant Street, next to the House of Teriyaki Japanese Restaurant at the intersection with Route 63. At the PVTA bus stop at the end of the driveway the day Pritchard was interviewed, several college students scrolled through the screens on their smart phones. A young man ran by in a T-shirt and shorts. It’s a busy spot, and despite its sign next to the sidewalk, the Fisher Home is easy to miss.
“Hospice is alien to what the rest of society is about,” Pritchard said. “There’s a much more accepting attitude toward death. More of an acknowledgment of it.”
Listening to stories
In order for a person to receive hospice care, a doctor must determine that he or she has less than six months to live.
The average stay for a patient at the Fisher Home is three weeks, Pritchard said. But the patients she wrote about in her book were there for longer.
Tea in hand, she led a visitor down the hallway through the home.
The one-story building offers nine beds, each in a private room. Some have private bathrooms, others share. In one room, a man lay in bed under a Boston Bruins blanket. In another, a small wooden bookshelf had been placed behind the bed, under a framed photo of the patient’s family. The shelves were stuffed with books.
Each room has a large window that looks out on at least one bird feeder. Every bed has a quilt that either has been made by a staff member or has been donated by a quilter’s guild, Pritchard said. After a patient dies, the quilt is sent home with the family.
Pritchard entered the room at the end of the hallway and settled on the quilt on top of the bed.
“This is the room that Howard Sachs was in,” she said.
Sachs grew up in the slums of New York City, fought in Okinawa, Japan during World War II, went to college on the G.I. Bill, and enjoyed a successful career as a physician and medical researcher. Just months before his death, he self-published a memoir called “Skydiving into Medical School,” which featured a cover photo of him standing atop a lofty mountain summit.
Even after suffering a stroke late in his life, Pritchard writes, he traveled to India, Nepal, Tibet, and even joined a Russian research expedition to Antarctica.
He was a difficult patient at first, Pritchard says, not wanting to give in to his deteriorating body. But eventually, he was able to find his peace.
For Pritchard, learning about each patient — even for a limited time — has been one of the draws to being a volunteer at the Fisher Home.
“I like to get to know their stories,” she said.
One patient loved ice cream, and chose to eat nothing but that confection during her stay at the Fisher Home. Another could not travel to attend her daughter’s wedding, so the ceremony took place in the gazebo on the Fisher Home’s grounds. A family member of a third patient refused to use the term hospice.
In her book Pritchard describes another motivation for volunteering at the Fisher Home as well: “Whatever you give here,” she writes, “is entered on the plus side of the ledger.”
Moved by experience
Prior to becoming a volunteer, Pritchard experienced hospice care firsthand. Both her mother and father received it. In both cases, she was impressed.
Three years after her mother’s death, Pritchard heard about the Fisher Home and joined the volunteers there.
“I came to realize that after attending to my parents in their latter days, I was missing contact with people in that final chapter of life,” she writes in “The Way to Go. “I phoned and signed up.”
The Fisher Home has 35 to 45 staff members and 50 or so volunteers. Each volunteer usually spends two hours, one or two days a week, at the home. Another 60 or 70 volunteers, Pritchard said, staff the hospice shop.
Pritchard took a six-week training program that met for a couple of hours once a week. The program covered several topics including expectations of volunteers and basic hospice principles. She also learned about OSHA (Occupational, Safety and Health Administration) regulations and took a behind-the-scenes trip to a funeral home.
She volunteers twice a week. While volunteers do not provide medical care, daily tasks vary widely, Pritchard said, according to the specific needs of each patient. One day she will cook a specifically requested meal for a patient, while another Fisher Home resident might ask for help turning the television turned on or off. A patient might want to listen to music, or talk, or phone a family member.
“There’s a lot of improvisation,” Pritchard said. “There’s no fixed agenda.”
Pritchard sees hospice work as more than a job. She describes it as a calling, or a vocation.
Among the staff portraits in “The Way To Go” are portrayals of Spiritual and Bereavement Counselor Norma Palazzo and Volunteer Coordinator Ilsa Myers. There is also a chapter on the weekly interdisciplinary team meetings involving multiple staff members.
“Many people — even doctors and nurses — shrink from acknowledging that a person’s life might be ending,” Pritchard said. “Hospice workers and volunteers need to be willing to face the fact of death and help those who are in their last days make the best of those days. Not everyone finds this role appealing,” she said. “But those who choose this path find it hard to imagine a different one.”
Pritchard said that several staff members and volunteers at the Fisher Home have compared their work to that of those helping women give birth, particularly to those who practice natural childbirth.
“One of the things that hospice has done is to try to de-medicalize dying in much the same way that natural childbirth was trying to de-medicalize birth,” she said. “The practice of medicine was seen as alienating the people most involved: fathers were sent home while their wives went into labor in hospitals, families were pushed away from their dying loved ones. Both ends of life were consigned to impersonal, technologically sophisticated environments that deprived those most involved of choice and emotional or spiritual content,” she writes. “Hospice and natural childbirth are attempts to normalize and humanize these events.”
(Originally appeared in the Hampshire Gazette.)