Training, Education Set This Volunteer Hospice Program Apart

Death and dying are not usually considered appropriate topics of conversation at most parties, but when the guests include the volunteers of the Hospice Information and Education Assn. the subject is unavoidable and discussed with ease.

“When any of us are at a party or dinner it is inevitable that the discussion turns to death,” said Mary Jane Maloof, a co-founder of the La Mirada-based group and the president of the La Mirada Volunteer Center. “But it is also about life, and part of what we are about is trying to change people’s attitudes about dying.”

The Hospice Information and Education Assn. was formed in 1979 to provide information and referrals, to educate the public about the hospice concept and to train lay volunteers to work with terminally ill patients and their families.

Joyce Green, president of the Hospice Assn. of Southern California, said that the La Mirada program is unique in the Southeast area for its emphasis on training volunteers and acting as an information and resource center.

Unique in Its Function

“I don’t know of any other program in the area that functions the way they do,” Green said. “They are also different in that they receive a lot of support from the city.”

The City of La Mirada provides the nonprofit group with office space and the use of a phone. The city’s director of Human Services and Public Information, Carol Cooley, conducts a session on the use of community resources for the training program.

The hospice concept originated--first in England in 1967--as a means of alleviating the physical and emotional pain of dying for the terminally ill and family, a reaction against what was perceived as the cold, impersonal environment of conventional hospitals. A main goal of hospice care in this country has been to facilitate home deaths for those who desire them. And once a patient has been diagnosed as being terminally ill, an emphasis is placed on pain control as opposed to cure.

Tania Rash, another founder of the group and the executive director of the La Mirada Volunteer Center, said the program has trained about 60 volunteers in the six years that it has been in operation. About 15 of the volunteers are currently active, and reported in September giving nearly 250 hours of volunteer time, Rash said.

The volunteers undergo an 11-week training program, which consists of a three-hour session once a week. The sessions deal with topics ranging from family dynamics and listening skills to wills and funeral arrangements. The volunteers also go on a field trip to Rose Hills Mortuary in Whittier.

“You would be surprised at the number of people who have never been to a funeral home or seen an open casket,” Maloof said.

After the program, the volunteers work with existing home care agencies and occasionally in in-patient hospice facilities, arranging with families to give as many hours as they can, and providing the patient and family with practical day-to-day needs, such as transportation, household chores and letter-writing.

“The volunteers are a support unit,” Rash said. “They take over when the family is unable to care for the patient or is unavailable or when they just need a break, but there should always be volunteers as a part of the hospice team.”

The volunteers are given a session on getting in touch with their own feelings about death early on in the program and it is at this point that those who are not suited to be volunteers often leave the program, Rash said.

“There really hasn’t been much of a drop-out rate,” said Rash. “We offer people the training, but we don’t elicit any commitment from them after the program. We feel we have done a good job if we have raised their consciousness.”

New Class Being Formed

The group is in the process of forming a class now, Maloof said, and encourages anyone interested in being a volunteer to contact the Volunteer Center.

Binkie Fitzpatrick, 50, of La Mirada, went through the training program and has been a volunteer for five years. Fitzpatrick became a volunteer after watching a close friend die of cancer.

“I wanted to see her,” Fitzpatrick said, “but because of her husband’s attitude toward death, no one was allowed to see her. She died alone, and I know she needed someone.”

Fitzpatrick, whose husband, Frank, is on the association’s board of directors, said that society has been afraid for too long to accept and talk openly about death.

“I think the philosophical approach is changing,” she said. “And as the attitudes change, people will be able to talk more. It is important that families come together. My husband has said, ‘Everyone I love has shared my life, I want them to share my death.’ ” The Rev. Jerry Elliot, the chaplain at Presbyterian Intercommunity Hospital in Whittier and a member of the hospital’s ethics committee, has worked with the volunteer classes. Elliot said the volunteers get more out of the experience than the satisfaction of helping people in need.

“There is a maturing effect on people when they are dealing with the ultimate issues of life and death,” Elliot said. “It is inevitable that they become more accepting of the fact that they are mortal.”

Cooley is typical of many hospice supporters, in that a personal experience with a dying relative developed a strong commitment to the hospice concept.

No Outside Help

Four years ago, Cooley’s mother, Marie Hofschulte, was diagnosed as being terminally ill with cancer of the pancreas. The family decided to care for her at home in a hospice program, but one that did not utilize volunteers.

“While we received support from the professional visiting nurses, there was no one to give the family respite care,” Cooley said. “Volunteers are an absolutely important part of the hospice experience and we could have benefited by the things that they are taught in this program. This program provides trained listeners, which is what my mother needed.”

In 1983, when Congress extended Medicare benefits to patients for hospice care, the importance of volunteers was specifically addressed. The standards require that hospices must use volunteers, lay as well as professional, and must record the cost savings and expansion of care achieved through the use of volunteers.

Suzanne Van Dyken, 55, of La Mirada, went through the training program four years ago and has worked steadily as a volunteer since then. Although Van Dyken is a retired registered nurse, she said the program had helped prepare her for the various roles she would need to assume while assisting hospice families.

“I didn’t really have to change my attitude about death,” Van Dyken said. “But the hospice volunteer must learn to cope with the practical aspects of death and dying. My last patient was a woman I had been with for three years who was dying of bone cancer. She and her husband came to depend on me very much, especially as a source of transportation. I would sit with her for several hours every day and read and talk, but mainly just listen. When she died, it was just like losing a good friend or a family member.”

Van Dyken is assisting the husband through the bereavement period, another important element of the hospice concept.

“We see each other quite often,” Van Dyken said. “My husband and I will take him to dinner and other places. We also just sit down and talk things over. This man has come to terms with his wife’s death and is able to accept it.”

The hospice philosophy holds that a family’s needs are often greater after the patient’s death than they were before. Elliot, who has directed a session of the training program on aspects of bereavement, said she tries “to make the volunteers understand that sometimes a family’s anger over a death can be directed at those who have assisted them.”

Elliot said that the hospice philosophy has changed attitudes even in conventional hospitals.

“I see more willingness among physicians at this hospital to realize that using extraordinary means to keep terminal patients alive are not helpful,” Elliot said.

Dr. Stanley Rubin, an oncologist (cancer specialist) on the staff of the Medical Center of La Mirada, said it is important that physicians admit to patients that they cannot cure all illnesses.

“Almost all patients who are told of the terminal nature of their illness can handle it,” Rubin said. “The most important goal is to allow the patients to live as well as they can and to allow them to die with the dignity and support they need.”

The volunteers who have participated in the training program have come from varied backgrounds--professionals, homemakers, retired nurses--and have included men as well as women, young people and old people, Tania Rash said.

Greg Hirokawa is a 20-year-old psychology major at Cal State Fullerton. He heard about the La Mirada program in a psychology of aging class and decided that volunteer work would give him a firsthand understanding of many of the issues he will likely face as a psychologist.

“I think it will be insightful to see the stages that a person near death goes through,” Hirokawa said. “I think it will give me a different perspective on life. Right now, I can’t think of myself as dying. I hope that I can be more sensitive and understanding about death after this program.”