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June 10, 2005

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Publication Date: Friday, June 10, 2005

Living with dying Living with dying (June 10, 2005)

Hospice care helps family cope with the most difficult time

By Diana Reynolds Roome

"We used to think hospice was about dying," said Sheryl Brown. "It's not, it's about living with the best quality of life you can, and then dying in your own home."

Brown's family became familiar with Pathways hospice care last year when her father, Dale Strotman, became too weak to endure repeated emergency trips to El Camino Hospital due to a severe respiratory disorder. Strotman, who had suffered a stroke 16 years before, continued living in his Mountain View home with the support of his wife Doreta and his daughter, who lived nearby.

A retired school superintendent and a brilliant and witty speaker, Strotman became aphasic -- unable to use or comprehend words -- as a result of his stroke. But after some 30 episodes of hospitalization, he managed to say, "I'm tired -- no more."

"He and I were very close," said Brown. "I knew what he was saying."

His physician had already suggested thinking about hospice -- but to his family this was admitting the possibility of dying, so they did not follow through right away.

"Our culture doesn't do death very well," said Brown. "It was hard for us to say we're making a decision about death. But I took a deep breath and made the important call."

Hospice, as it turned out, brought life back to Strotman and his family.

Instead of struggling with acute shortness of breath, pain, and the frightening prospect of the next rush to the emergency room, Brown and her mother found themselves able to cope with every eventuality at home. This was because Pathways provided all the support they needed to take care of Strotman until the end -- whenever that might turn out to be.

The moment the case manager appeared at the door Strotman took a shine to her, Brown recalls. A small team of people made visits: specialized nurses with access to Strotman's medical records dealt with pain and symptom control; a home health aid worker came to bathe him; a social worker checked up on what was needed and broached the subject of funeral arrangements. Help was available on the phone at any time of the day or night.

"They made us feel we could do it," said Brown. "This was what Dad wanted and what we wanted, and whatever we needed appeared, like ducks swimming in a row. It was such an empowering thing."

Strotman died in late August last year, 34 days after hospice had made it possible for him to go home and stay there for good.

Brown was glad they did not wait any longer to call in hospice. Many people do not make that call until the death of a loved one is very near -- if they make it at all.

Lack of knowledge and misperceptions mean that more than half of those who die of terminal or chronic conditions in the U.S. do so without the benefit of this kind of personal support and care. Of those who do, one-third are referred only in the last week of life.

"For those patients, it's a crisis and the patient is in rapid decline," said Deborah Stinchfield, who started volunteering with Pathways in 1977 and is now public relations coordinator. At that time, the nonprofit organization was based in Palo Alto and known as Midpeninsula Pathways.

In 1987 the South Bay branch moved to Mountain View, where it stayed until it acquired new headquarters in Sunnyvale late last year under the name Pathways, which "better reflects its full range of health services." However, a large number of volunteers still come from Mountain View.

"The biggest challenge is getting people to take that first step," said Stinchfield, who recommends that families reach out before there's a crisis. One reason for hesitation is that people do not always realize that hospice is a kind of care, not a place. (Though there are some hospice centers, Pathways does not run any.)

What hospice provides is a team of specialists who offer the physical, psychological, social, and spiritual help that makes it possible for an individual or family to cope even with the most difficult medical condition. People can choose what level of service they wish, and for some, a telephone link is all they need.

For those who require greater support, especially for those without family nearby, there is a whole continuum of services. In addition to the nurse, social worker and home health aide, Pathways has links with spiritual advisors who may or may not be classically religious, but who can help resolve pressing questions or issues and review the meaning of one's life.

Many people also choose to have a trained volunteer who spends time with the patient, giving the family a break to go shopping or simply provide companionship and a sense of normal life. The volunteer often becomes an indispensable family friend, helping with equipment or personal care, giving massages, talking, playing games, or simply being there with laughter or a song.

"The level of attention is enormous," said Brown. "When they're in your house, you are the most important person. Without that kind of support, you can feel alone and afraid -- do we wait, do we go to emergency, should we call the ambulance? But you know you can call [Pathways] any time and help in some form will arrive."

Because hospice was first started to care for people who were dying from cancer, people sometimes think it is only appropriate in those cases. In fact, hospice brings relief to people with many chronic, progressive conditions such as Alzheimer's or heart, lung, kidney and neurological diseases. Though primarily based in homes, it is also available in nursing homes, assisted living facilities, even hospitals.

It is not only for the dying, but for anyone who is managing a long-term chronic illness or recovering from surgery. Increasingly, hospice is supporting families of children with life-threatening conditions. It makes sense to take advantage of this wide spectrum of services early, before the burden of illness becomes a serious drain on patient and family.

"Life is a continuum," said Stinchfield. "We've had people go back and forth -- they sometimes stabilize and get better."

However, when a disease eventually leaves the chronic stage and becomes end-stage, hospice lightens their journey to the end -- and later, it can help those who grieve.

"The longer a patient is in hospice care, the lower the incidence of depression for the bereaved," said Chris Taich, bereavement services manager at Pathways. "For those who are dying, hospice has an impact on pain and symptoms. For the bereaved, it has an impact on grief and healing."

Pathways runs support groups year-round for those who have lost loved ones. For anyone who does not feel ready to join a group, short-term individual counseling is available. Staff can also provide support by telephone to help deal with the pain of loss, accept the new realities of life, adjust to life without the loved one and eventually reinvest emotional energy into other relationships. A newsletter keeps them in touch.

This June and July, grief workshops will offer a quiet place for anyone -- whether they have received hospice services or not -- to create a book of memories, to come to terms with loss through music and art, imagery and meditation, and for hands-on healing using massage, aromatherapy and Reiki. Several videos that address the process of bereavement will also be shown and discussed.

For Sheryl Brown, volunteering for Pathways was a way to honor the father she lost. She now works there full-time, helping to recruit, train and organize volunteers, who are such an important part of the work. Shortly before Dale Strotman died, he managed to tell his daughter, in reference to his case manager, "You help her." Brown took this to be an instruction to give something back to Pathways.

"It was such a gift to the family," said Brown. "And that he could die at home with his family around him was our last, best gift to him."
Information: Contact Pathways at (888) 755-7855 or (650) 949-3029, or visit online at www.pathwayshealth.org. For more hospice information, visit the National Hospice and Palliative Care Organization at www.nhpco.org.


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