Healing mind and soul
Chaplains say more hospice patients look harder for spiritual care as their bodies are failing
They do not prescribe medication, plump up pillows, or serve soothing broths, but for hospice patients — and their families — spiritual caregivers often ease the pain that hurts the most.
“The emotional comfort comes first from the companionship, accepting people exactly where they are, acknowledging as they certainly know themselves that they are coming to the end of life, and being able to reassure them that it’s OK to die,” said Rabbi Herman Blumberg.
Spiritual care has always been a part of hospice programs, but chaplains interviewed for this article report that patients and their families increasingly recognize the need to heal the mind and soul, even as the body is failing. Behind this trend, they say, is that people are less likely now than in the past to view spirituality as the exclusive realm of religion.
“When I was younger everybody went to a church,” said Nan Moore, 58, a chaplain at Good Shepherd Community Care in Newton.
“There is a whole other group of people now who have either left their denomination or who have not been raised in any religious environment, but yet have had a spiritual life,” said Moore, who is a Unitarian Universalist.
Blumberg is rabbinic director of Hebrew SeniorLife Hospice Care, which received Medicare approval in February after operating on donor support for about a year. The hospice in Dedham accepts patients from all over Greater Boston without regard to religion, but it seeks to set itself apart by training its entire team — including nurses, health aides, social workers, and therapists — to be “super-sensitive” to Jewish culture, tradition, and sensibility, Blumberg said.
But while the hospice program emphasizes its Jewish connection, there are times when Blumberg puts his yarmulke in his pocket before meeting a patient for the first time.
“One of the interesting things in my work is that I have to frequently overcome — particularly from patients who are Jewish — the ‘Rabbi, I’m not religious; I don’t need you,’ or ‘I’m not ready for you’ response,” said Blumberg, who for 19 years was rabbi of Temple Shir Tikva, a Reform congregation in Wayland. “And very frequently when I go in, I don’t identify myself initially as a rabbi because it can be a show-stopper.”
Similarly, hospice chaplains of other faiths spoke of removing their clerical collars or crosses during hospice visits.
“As a spiritual care professional, you have to have it in your DNA that you’re there to support the patient’s choice, not there to evangelize or proselytize,” said Andrew Tripp, a candidate for the Unitarian Universalist ministry who is on the hospice team at the Chelsea Jewish Foundation.
But the hospice chaplains do draw on aspects of their religious traditions that can be universally
Tripp said the Unitarians’ “human-centered approach” has helped him tease out where patients and their families look for meaning. He recalled a woman who in her 50s developed amyotrophic lateral sclerosis, or ALS. An artist and teacher, “she was feeling a lot of despair because the disease took her prime form of meaning-making,” Tripp said.
At her request, he read poetry to her, and brought her books of religious art. Communicating with the help of a computer device that tracked her eye movements, she would talk about the paintings and her experiences seeing them in museums. Tripp said fellow hospice workers reported that the days he visited she would be calmer and less
likely to signal for help.
Good Shepherd’s Moore said she provides spiritual care for a patient who spends her time on craft projects.
“It helps her with pain,’’ said Moore. “It helps give her life a purpose.”
Others, she said, find peace and a sense of the divine in nature. One woman wanted to visit a relative in New Hampshire, which was arranged with the help of a hospice there. Some have found it soothing to be able to swim in their final days.
Trained in the Japanese practice of reiki, Moore offers to help patients relax by gently touching the head, shoulders, hands, or feet. They may feel heat or coolness, she said, adding that most patients fall asleep.
Noting that Good Shepherd recently began offering pediatric palliative care, Moore said she provided reiki care to comfort a young patient who had a brain tumor.
The Rev. Tim Krukowski, a priest in the Old Catholic Church and a chaplain at Compassionate Care Hospice in Woburn, said that in some cases hospice patients welcome his presence as an opportunity to talk about death.
“There’s a vicious circle’’ regarding the subject, said Krukowski. “The family believes they are going to upset the patient, and the patient believes he or she is going to upset their family.”
So how does he break the taboo?
“Sometimes I will say something like, ‘Are you afraid?’ Then they’ll talk about those fears," he said. “You are looking for that inner peace of the patient. . . It may be a family issue that has never been resolved or a worry about what will happen to my spouse or children. You can be 95 years old and still worrying about your kids.”
Krukowski, who lives in Salem, N.H., said when he is asked what comes after death, he deflects the question.
“I will often respond, ‘What do you think is going to happen?’, which opens up a whole conversation about their perception of afterlife.”
According to Krukowski, some people talk about heaven and “a union with the Creator.” Others, though, “don’t want to talk about pearly gates and harps.” They ask, “Am I going to hell?” And that prompts a discussion over why they might fear going to hell, he said.
When a hospice patient who had been an architect asked her about heaven, the Rev. Rosemary MacKay suggested, “Why don’t you build your own?” That was a project he could start work on in life, noted MacKay, a United Church of Christ minister who has been affiliated with the Cranberry Hospice organization in Plymouth for a decade.
“Some people have no vision of an afterlife and are comfortable with that,” she said.
MacKay said a basic tenet of her faith is “the concept of God as an ever-abiding presence that is
loving and accepting.” When patients express guilt over, say, infidelity or actions they committed as young soldiers, she said, “Our job is not to judge; our job is to work with people where they are . . . and hopefully come to a place of peace before they die.”
The minister recalled a man who said, “I had an affair on my wife and so I’m not this great person you think I am.”
“So we talked about why people have affairs,” MacKay said. “There’s usually a lot more to it than just a person deciding to step out of the marriage.”
Even among people who have chosen hospice care, chaplains encounter those who still struggle with the reality of death. MacKay recalled a patient in his mid-50s who refused to accept that he had a terminal disease.
“We talked about what was important for him; we didn’t talk about his dying,” she said. “What was important to him was being strong and not giving in. We spent a lot of time talking about his spirit being strong — nothing was going to take that away from him, but that his body was
pooping out on him. He was able to make that distinction so that he did eventually have a peaceful death, even though he never wanted to die.”
Spiritual caregivers may be asked to help arrange a reconciliation with estranged relatives or friends. If that is not possible, they may suggest that the patient write or dictate a letter expressing their feelings toward that person.
For Blumberg at Hebrew SeniorLife, the challenges run much deeper than rabbi-resistant Jews.
“No one likes to deal with death, but Jews for a variety of reasons have a somewhat harder time with it,” he said. “As a result, often there is extended discussion and angst regarding when to move from aggressive care.”
The Jewish religion, he said, makes it imperative to focus on this life and not on the life to come.
“When we make a toast, we say l’chaim, to life. I think that’s emblematic,” he said.
Strictly interpreted, Jewish law places the highest priority on preserving life. That may appear to conflict with hospice, which emphasizes comfort and rejects heroic measures that might buy a terminally ill patient a few days or weeks.
“In a particular situation the relevant issue is how long you preserve life if there is considerable suffering, or if we’re keeping people alive artificially,” Blumberg said. “For some Jews, it may present a contradiction; for others it won’t — even within the framework of orthodoxy.”
In a pioneering effort in the Jewish hospice movement, the Hebrew SeniorLife program is conducting community workshops on hospice care and other topics involving seniors, such as how to persuade a parent to stop driving.
Hospice also helps relatives and friends come to terms with death.
“The family comes to see the hospice team as an anchor at a time when there’s total chaos in their beings,” Blumberg said. “We become companions with the family and patient along the way.”