Wednesday, June 10, 2009

Caregivers light life’s final path

Express Staff Writer

Johanna Fletcher works with hospice patients in the Wood River Valley who are facing the end of their lives Photo by David N. Seelig

What would you do if you knew you had only a short time to live? Would it change your relationships? Would it change your priorities?

Most of us have the luxury of putting off these questions, at least for a while. Others face them today, managing their spiritual and worldly affairs in the face of a terminal illness. Thanks to end-of-life caregivers in the Wood River Valley, they need not face those questions alone—and they need not face them in a hospital.

Johnna Pletcher is a private caregiver for the dying. When she isn't working as a barista at Starbucks café, she is on call at the Hospice and Palliative Care of the Wood River Valley to spend time with people facing end-of-life issues.

"I'm doing what a lot of people around here do," she says. "We work in the shadows because dying is very personal and very private. Some want their death to be big and flashy. Others simply want to wrap themselves in a blanket and walk alone into the woods. Dying is an amazing experience and people should be able to do it any way they want to."

Pletcher is one of about 100 private and volunteer caregivers for the dying in the Wood River Valley. While working as an emergency medical technician in Stanley 28 years ago she was asked by a family to help a 2-year-old child die.

"I sat with him. I sang to him. It was the first time I realized I could provide love to someone when they are dying and not be frightened by it. Children are the easiest because they are very clear and know what they need."

Pletcher recently granted a last wish for an 8-year-old boy with a terminal illness, saddling a horse for him so he could ride in a snowstorm several days before his death.

Another patient, an elderly woman, asked Pletcher to read Louis L'Amour novels to her and hold her hand until she died.

"In the end she told me 'a train is coming.' I asked her what seat was hers. She said 'No. 37.' I said 'Oh, that's a window seat,' and she soon passed away."

"People die in character," says Carolyn Nystrom, director of Hospice and Palliative Care of the Wood River Valley. "The right way to die is the patient's way to die. It's all about quality of life and giving control to the patient. Statistically, people prefer to die at home if they have the choice."

With three paid staff members and 80 volunteers, Wood River Valley Hospice is currently providing that choice to 27 patients. Many have signed living wills with "do-not-resuscitate" orders so they can die naturally without recourse to life-support measures from emergency medical personnel.

"About 90 percent of those dying in the Wood River Valley use our services," says Nystrom, who offers a 20-hour training course for those who want to volunteer.

She says good end-of-life caregivers have a combination of good training and natural "inner compassion."

"Some are called to this work because of a spiritual journey of their own, but if someone wants to join because someone in their family has just gone through the hospice program, we ask them to wait at least one year," she says. "We don't want them doing this work as part of their own therapy."

Nystrom says Hospice of the Wood River Valley is a model for others around the nation. The first of its kind was established in 1971 in Branford, Conn., by Yale University Nursing School Dean Florence Wald following the seminal work of Cicely Saunders, Dr. Elizabeth Kubler-Ross and Dr. Balfour Mount.

Today there are 4,300 hospices nationwide.

"This is very rewarding work," says Nystrom, who has worked in hospice care for 29 years. "Seeing the strengths in families gives me an appreciation of how precious life is. You learn to live each day in a meaningful, present way. You learn not to put things off with people."

Nystrom says Wood River Valley Hospice patients have access to pain medications and non-traditional therapies such as aroma therapy and massage. They also have access to religious leaders in the community.

"Spiritual issues are very important, but a person can't address them if they are in pain or nauseous," says Nystrom.

"We see the family as the unit of care. Sometimes our volunteers sit with a patient so that a family member can go to a garage sale. Sometimes we help with yard work."

Nystrom says religious belief is a big issue for some people at the end of their lives, but not for all.

"Some believe in Heaven and Hell, others in reincarnation. Some believe in nothing at all. What matters to us is whatever their story is. You don't want to get in someone's way. You only want to be a companion on the path."

Nystrom says family members are sometimes frustrated by expectations they have placed on a dying person.

"There can be a certain amount of spiritual angst at the end of a person's life. The experience can be fearful. There can also be a sense of failure among family members if a person didn't find peace and clarity.

"We try to identify or recapture whatever a patient originally hoped for with regard to dying—a person's original goals. Doing this can bring a sense of peace."

Janis Storey has been a caregiver for 20 years. In addition to working with the terminally ill, she works with patients suffering from spinal cord injuries and chronic illnesses.

"After reading 'The Tibetan Book of Living and Dying' many years ago I came to the realization that putting more energy into the actions of this life will lead to peace of mind and a sense of equanimity at the time of our death.

"One thing I have learned from this work is that to have a nice death, it sure helps to have lived a nice life. The less of the life within we have built, the harder it is to let go of it."

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