Supporting spirit in the final stages of life
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Words for the living
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When people are dying, it is a spiritual event with medical implications."
Arlene Lowney,
Executive director of Evercare Hospice & Palliative Care in Waltham.
"Caring for a person at the end of life is a deeply spiritual moment. It's the last opportunity for life closure."
Dr. Suzana Makowski, associate professor of medicine, Division of Palliative Care at the University of Massachusetts in Worcester
"As people of God we should come
together to make this burden a lot better."
Rev. Bernard Harris
of Zion Union Church
of Hyannis
Five questions that help develop trust and rapport with the dying:
What is really important to you in your life?
What supports you when life is difficult?
Do you have a way of making sense of what has happened to you during your life?
When do you remember yourself as being your most loving?
What worries you the most?
Meredith Presbrey,
bereavement coordinator of Hospice Services
of Massachusetts in Wareham.
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SANDWICH - Sharon Ferraro of Bourne, a medium, wants to be more compassionate and help alleviate her clients' fear of death.
Pat Hart of Elder Services of Cape Cod hopes to feel more comfortable talking to people about end-of-life issues.
And interfaith minister Kathleen Geagan is seeking new ways to connect spiritually to those who are dying and "recharge my feeling and passion for this work."
They were among 40 or so spiritual caregivers - clergy, lay ministers, hospice chaplains and volunteers, parish nurses, outreach workers and pastoral visitation teams - who attended an all-day educational program on "Spiritual Care at the End of Life" last Thursday at Corpus Christi Church in Sandwich. Sponsored by Hospice & Palliative Care of Cape Cod, the Cape Cod Council of Churches and the Massachusetts Compassionate Care Coalition, the pilot program was designed to help participants increase their knowledge and skills so they can more effectively provide care and support to patients and families at the end of life.
When people are seriously ill, they typically look to their clergy for support and turn to spirituality to calm their fears about death. Yet in one study, 46 percent of clergy said they did not feel their education prepared them well enough for assisting others with issues of death, noted Dr. Suzana Makowski, associate professor of medicine, Division of Palliative Care at the University of Massachusetts in Worcester
A reality of modern life is that 85 percent of Americans die in a health care facility such as hospitals, nursing homes or assisted living facilities with professionals who are strangers tending to them, Makowski said. "What is one of the most sacred and intimate experiences in life," she said, "may be faced in pain and loneliness."
Clergy and spiritual caregivers play a critical role in caring for the dying, said Makowski, who encouraged participants to have the courage and will to "sit and watch" with them.
"Taking care of the dying is such an honor," said the physician, who related stories about her own interactions with patients facing death. What the dying need, she said, are assurances of non-abandonment, assistance with physical and practical needs and honest and open communication.
Spiritual caregivers need to understand the normal and natural physical changes that occur during the dying process, Makowski said. They can help patients address the issue of pain and suffering and act as patient advocates.
The majority of people have pain at the end of life, Makowski said. Because of their religious beliefs, however, some people believe they deserve to suffer.
"You can help them recognize they deserve support from pain," she said.
"The clergy can help support the family in letting the person go," she said. "It's a different message (coming from them) than coming from the doctor."
To make sure a person's wishes are honored, bioethicist Helene Lutz urged spiritual caregivers to encourage people to do advance care planning before a medical crisis occurs. She advised designating a health care proxy who can make decisions for the ill if they are unable to do so.
Family should be involved in conversations about end-of-life issues, Lutz said. "It takes away a lot of burden from the loved ones if these things are put in writing."
Six panelists from different faith and ethnic communities on the Cape offered diverse perspectives on the religious beliefs and cultural traditions that shape a person's view toward end-of-life care. A common theme was that many members of ethnic groups prefer to die at home surrounded by loved ones and are resistant to outside help.
African-American families tend to take care of their family members at home, said the Rev. Bernard Harris of Zion Union Church of Hyannis. "We look at it as our responsibility." It's also a carryover from the past, he said, when African-Americans were sometimes denied hospital care.
Ninety percent of patients rely on their religious beliefs to cope with a life-threatening illness, said Meredith Presbrey, bereavement coordinator of Hospice Services of Massachusetts in Wareham.
The role of spiritual caregivers is to offer support and comfort to the dying. She suggested techniques such as active listening to build a rapport and sense of trust.
What's important is not what you say, Presbrey said, but actions such as stroking a person's hand.
A hospice chaplain, Presbrey said the spiritual pain of the dying process may be harder for some people than the physical pain. Clergy sometimes find themselves helping people deal with unresolved grief; family estrangements; anger at God; the need to forgive others; and feelings of isolation, loneliness and distress.
She advised participants to offer the dying "our common humanness. We can be the messengers of hope and meaning and true companionship."
Presbrey remembered one patient who told her "thank you for being my friend."
In doing this special work, it's important for spiritual caregivers to take care of themselves, Presbrey said, by accepting their own limitations and believing that "God will provide the guidance."
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