Hospices Bring Care Into the Home : Dying People, Their Families Get Medical Aid, Counseling

Emma Martin is dying of multiple myeloma, a form of bone cancer. The 67-year-old woman is at home, and her husband, Norman, is by her side, 24 hours a day.

San Diego Hospice is there, too, for scheduled visits during the week, and for emergencies, in the form of a team--a nurse, a social worker, a home health aide, a volunteer or a chaplain.

Norman Martin, 67, was a prisoner of war during World War II, and he needed a lot of help after that, he said, just as he needs and appreciates the help he is receiving now.

“Without (the hospice team), I would be dead,” he said. “You give them a call and they are always there--even Gail, the girl who answers the phone, is worth her weight in gold.

“If my wife has a problem at night, they page the nurses--get hold of the doctors. It’s the greatest thing. So good. There’s love in their hearts.”

Supported primarily by insurance funds, Medicare, Medi-Cal and donations, San Diego County’s hospices have served thousands of dying people and their families, helping the family to care for the dying patient at home with a team of medical and counseling professionals and volunteers.

Daniel Bressler, medical director of San Ysidro Health Center, said, “Hospices in England are residential. People go and stay until they die. Here they are home services which allow people to go home, and drugs are given for comfort. But the patient has to be appropriate for it--has to want it. It’s not for everyone. There has to be a lot of family willingness and acceptance. . . .

“Some people don’t want to be told they are going to die in six months. These people would rather go home and hire a non-hospice nurse rather than have hospice people in their home constantly reminding them they are terminal.”

The idea was begun in London by Dr. Cicely Saunders in 1967, and the first hospice in the United States was opened in New Haven, Conn., in 1974. Now there are 1,300 in the United States, five of them in San Diego. The oldest, San Diego Hospice, was started in 1977.

According to Dody Eiler, executive director of Elizabeth Hospice in Escondido, “The hospice concept is growing like mushrooms.”

The number of terminally ill patients requiring hospice care is increasing, due in part to rising costs of medical care, increased longevity and AIDS.

San Diego Hospice is nonprofit and serves 100 to 130 people daily. Hospice of the North Coast, in Encinitas, started in 1978, has a caseload of 30, is also nonprofit and is affiliated with Scripps Memorial Hospital-Encinitas and Tri-City Hospital in Oceanside. Elizabeth Hospice in Escondido, also nonprofit, was started in 1978 and serves 20 to 30 patients each week in the Palomar-Pomerado Hospital District. Horizon Hospice in Poway, started in 1984, serves an average caseload of 20, and is a for-profit, proprietary hospice.

Kaiser Permanente, San Diego’s largest health maintenance organization, started a hospice program in August and serves 15 patients at its El Cajon facility.

The not-for-profit hospices are financed mainly by insurance, donations and fund-raising. San Diego Hospice is also Medicare-certified, as is Horizon Hospice.

True Ryndes, director of clinical programs at San Diego Hospice, said there is a difference between pain and suffering--and that hospices understand both.

“Pain has to do with the physical burning or crowding of a tumor,” he said, “but suffering has to do with the anguish people experience when they separate from loved ones. We try to help people get rid of not just the physical pain, but the anguish, anxiety, depression, insomnia, anger and fear.”

The hospice, too, he said, has to do with healing, not curing. “The ability to cure the disease does go away, but symptoms can be controlled, and the patient can be made comfortable, and relationships can be healed,” Ryndes said. “We help the patient determine if he or she is in right relation to themselves, to others, and in right relation to a higher power, however they see that.

“When there is nothing to be done to cure the disease, there are significant things which can effect healing.

“We . . . act as a team. This is one way in which we differ from (traditional) home health care. It is an integrated approach. My staff is trained specifically to deal with terminal illness. I think together we’ve created Marcus Welby.

“A nurse may be a spiritual guide, as well as a counselor, as well as a nurse.”

Linda Cunningham has been a hospice nurse for five years. “I wouldn’t change this job for any other in the world,” she said. “Our role is to go in and allow the family to make their own choices. These people aren’t just dying patients, they are the same people they always were. I feel it is important to let them know their day counts, and is valued by me as well.

“Years ago, our aunts and relatives lived down the street. Now, with our nuclear families, this isn’t so. It seems to me that the hospice team becomes almost an extended family.”

Close to two years ago, Alice and Clyde Truss learned that Clyde had terminal cancer.

When Clyde Truss, 72, was discharged from the hospital, Alice Truss wanted to care for her husband at home but was reluctant to call a hospice.

“We both thought, here is a do-gooder program, and we felt we were independent people,” Alice Truss said. “I felt resentful, thought I could take care of everything myself. I didn’t want interference, or to admit he was terminal--and I didn’t want strangers taking care of him.

“But from that first morning the counselor came out (from Hospice of North Coast), I liked her manner and approach--and Clyde accepted her. She suggested an RN visit every day.

“Well, I grew to love the nurse. She made us all feel this was all she had to do all day. She let us talk. She was an angel.

“And a young girl, a home care aide, came to bathe him. At first I thought Clyde would resent that. He was a macho man. But the girl said to me, ‘Just sit and relax. Take a relief from your chores.’ Then I heard them laughing and talking. I looked forward to this every other day.”

The night of Clyde Truss’ death, Alice Truss called the hospice nurse. “I could tell he was in pain. I called her and she was there in 20 minutes. She stayed with us, kept reassuring us. She relieved anxieties and pain. She made us see this was as natural as being born. We come and we go.”

Even with the support of the hospice program, Alice Truss suffered a nervous breakdown soon after her husband’s death.

“The hospice people were there for me when I had my breakdown, and when I came home, they were

there,” she said. “It was almost too good to be true.”

The care of the patient in the home, and the follow-up care of the bereaved after the death go hand-in-hand at all San Diego hospices, including support groups and personal counseling for up to a year after the death.

In the home of a person with less than six months to live, the care is monitored by the patient’s physician, and the hospice team members provide intermittent care and are available 24 hours a day.

All hospices require that someone be in the home 24 hours a day or that a care-giver system be in place, as in the case of San Diego Hospice, which provides a telephone lifeline unit hooked up to phone Mission Bay Hospital and involves a friend or relative who has power of attorney for the patient.

Acquiring hospice care usually begins with a phone call, according to Connie Devaney, director of Hospice of the North Coast.

“We are called by a physician, a family member, or sometimes by the patient himself,” she said. “We send a nurse to the home, get the patient’s written consent, make sure the patient and the family understand hospice is a palliative, not a cure--and that we address the symptoms, but don’t expect them to get better.

“We do want them to maintain hope though, to stress quality, not quantity of life, and we help them decide what their needs are.

“It’s hard for anyone to say, ‘Yes, I’m dying.’ It’s a difficult point to reach. That results in second opinions, and time goes by, and it is often 3 1/2 weeks before the death that we come on. We need to be in sooner.”

But not everyone wants to go home. Judy Sala has mixed feelings about the word hospice, because it brings back memories of fear experienced when Camp Pendleton Hospital told her father four years ago that he would be sent home to die.

“Hospice is OK if what you and your family want is to come home to die,” she said. “If you do, or if you have no other choice, then, thank God, hospice is there. But not every family can take it (a home death). It is a hardship, a burden.

“My father was scheduled to come home, and he didn’t want to. Neither did my mother.”

Sala, married and the mother of five children, said, “It scared me to think about him coming home, and I wondered if I would have to quit my job to help care for him.”

But Sala’s father died a few days before he was scheduled to go home.

“I think my father died so that he wouldn’t have to go home,” she said. “They say hospices allow you to die with dignity, but I feel my father died with dignity in the hospital.

“The hospital called us when my dad was dying. My brother took emergency leave from his job and came with his wife. My mother and brother and sister-in-law all said goodby to my dad in the hospital.

“Then the nurse said, ‘Do you want to stay?’ She said that even in a coma it is felt they know if someone is there.”

So, Sala stayed. “My mother couldn’t stay, and so she left with my brother and his wife. I was alone with my dad for three hours.

“He had oxygen, intravenous feeding and pain relief. The nurse came in every few minutes to check on him and they brought me coffee and tea.

“I read to my Dad. I talked. I sang songs.

“I don’t know if he knew I was there, but I knew I was there.

“When he died I told the nurse and she put her arms around me. Then I called my mother, and they called the chaplain.

“It was a beautiful experience, if you can say that about death. My dad died with full dignity. I saw him die. I held his hand, and that man died the way I knew my father wanted to die.”

Diane Hyde, a social worker for San Diego Hospice, one of the largest in the nation with 84 professionals and paraprofessionals and 250 trained volunteers, said, “We help the patient accept the dying process, help them prepare emotionally and determine their unique problems and needs--emotional, psychological or practical.

“When it is time for dismissal, the patient often realizes his or her options are limited. When, for example, Medicare will no longer pay for in-hospital care, the patient is sent home or to a nursing home--but nursing homes cost $2,000 a month. Many patients have to come home, not because they want to have a home death. And that’s where some of my work comes in, if they call hospice.

“It is a hard time, full of a lot of fear and difficulty. I have to say, ‘OK, coming home isn’t what you chose . . . ‘ and go from there.

“It may be one frail person caring for another elderly dying person.”

Philanthropist Joan Kroc has donated to San Diego Hospice a building and land for a 24-bed in-patient hospice near UC San Diego Medical Center, to be opened in the spring of 1988.

“This will be a short-term facility, not a place where a patient will go in and stay until he or she dies,” Hyde said. “It will be for one- or two-week stays, for pain management, or respite for care givers. In some cases it may be used for the patient’s very last stages of dying.”

San Diego Hospice will hold its fourth annual “Light-Up-a-Life” holiday fund-raiser at 7 p.m. Friday at Parkway Plaza in El Cajon, and at 7 p.m. Saturday at University Towne Centre. San Diego residents can place a light, for a $15 donation to San Diego Hospice, on one of the two holiday trees, in memory of a loved one.