Photograph by Robert Scheer
Jeanne Fabricius, a nurse for Hospice of the Valley, visits Julio Martinez at his home often to offer medical care and emotional support. With them is Elizabeth Cariño, who also provides assistance.
No one wants to hear that they have a terminal illness and are going to die soon. But if it has to happen, most people would rather die at home with their family than in a hospital. Hospice of the Valley makes that possible.
Hospice of the Valley is one of 2,500 programs across the country that help terminally ill patients make their final journey as peaceful and comfortable as possible. A cadre of registered nurses and volunteers work in partnership with the patients and their families, providing physical care and emotional support and helping to take care of practical concerns, from ordering a hospital bed to making sure their bills are paid and their pets are cared for when they die.
Jeanne Fabricius of Saratoga has been a nurse with the hospice for 5 1/2 years. Originally from Denmark, she had been concerned throughout her nursing career about patients "dying lonely." After a close friend used a hospice program to get through her final days with cancer, Fabricius was inspired to get involved. She began with Hospice of the Valley as a "respite volunteer" in 1989, coming to patients' homes to give their caregivers time to relax or do errands. After she passed the state board exams to practice nursing here, she joined the Hospice of the Valley staff.
Fabricius works 20 hours a week, helping four patients at a time. Although the average is 45 days, the time between the terminal diagnosis and death can be as short as two days or as long as a year and half, she says.
The hospice nurse serves as a case manager, supervising a crew of helpers. She orders equipment, such as hospital beds and commodes, manages medical care, and makes sure the patient has the emotional and spiritual support he or she needs. The nurse calls in home health care aides, counselors, pastoral volunteers and respite volunteers as needed.
She is there to give help wherever it's needed. "It's a lot of just being there and not just doing for," Fabricius says. "Just being able to talk about it is often enough." Sometimes patients can tell a hospice worker things they can't talk about with their family, she adds.
In the hospital, the patient has to abide by the institution's rules and schedules. With a hospice, it's different. "In the home, you are the boss," Fabricius says.
Hospice of the Valley Executive Director Barbara Noggle adds, "It's really important to accede to the family's wishes, whatever they may be."
Having a nurse come in and start giving orders can be disconcerting, Fabricius says, but she and her patients quickly get used to each other. "I come as a stranger and leave as a friend."
At first, she may come just once a week, but as the end nears, the visits become more frequent. A nurse is on call 24 hours a day and can be there in a few minutes if needed. "Sometimes just for them to know we are there is enough," Fabricius says.
The birth of the hospice
Hospice of the Valley hired Noggle as its first employee and served its first patients in 1980, but it began two years earlier as the dream of a group of volunteers whose personal experiences had shown them the need for a hospice in the West Valley.
Saratogans Jennie Magid, whose physician husband, George, died of cancer; registered nurse Beth Keady; Gay Crawford, a cancer survivor, and several others called their effort "Project Journey."
Magid was the visionary, Crawford says. She wanted to keep the operation small, with volunteer nurses, and she never wanted patients to see a bill. Crawford wrote a project for the Junior League, and the league funded much of the group's early activities. With the encouragement of the Rev. Roy Strasburger, they started meeting at St. Andrew's Episcopal Church to write by-laws and objectives and set up the organization. When the need for insurance threatened to topple them, a representative of Catholic Social Services offered to carry their insurance for them until they were self-sufficient.
Keady, who married and became Beth Keady Ellis, spent seven years working for the hospice as patient-care coordinator, until she was diagnosed with breast cancer herself. With others, she formed the Y-Me Bay Area Breast Cancer Network in 1990 and devoted herself to helping others with cancer until the disease took her life in January 1995.
Hospice of the Valley limited its work to the West Valley at first and only served cancer patients, says Crawford, an honorary life member of the board who is still active helping cancer patients through her own Reach to Recovery group. Saratogan Jim Katzman joined the board and was instrumental in helping the organization grow, she says. He is currently president of the board, serving his second three-year term in a row.
The organization had to grow to survive, Crawford acknowledges. The staff has grown from one to 31 and covers all of Santa Clara County now. She often refers cancer patients to Hospice of the Valley. Before the hospice, she saw cancer patients who needed help, and it wasn't there. "It is meeting a great need in the community. Many people in this valley have benefited from the loving, caring help of HOV."
Who gets hospice care?
To qualify for hospice care, patients must have someone to serve as a caregiver in their home, usually a spouse or adult child, and they must accept that they will never be cured. Nationally, 95 percent of hospice patients have cancer. The other 5 percent are dying of AIDS, heart, lung or kidney disease, or Alzheimer's disease.
The Healthcare Finance Administration sets guidelines for when a patient is ready for hospice care, using a scale of physical symptoms and levels of daily activity, Noggle says, but it's a difficult step to concede that they will never recover. "Hospice [care] is comfort-directed rather than cure-directed," she explains.
Most patients are referred to Hospice of the Valley by doctors, social workers or hospital discharge planners. The hospice handles an average caseload of 30 to 35 patients at a time. Both Noggle and Fabricius note that sometimes patients or doctors wait too long to refer patients to the hospice because they aren't willing to accept that their illness is incurable.
A little more than half the patients are age 65 or older. The younger patients include children, although doctors tend to be more aggressive in trying to find a cure and less willing to refer them to hospice care.
Once Hospice of the Valley is called, a representative visits the patient to discuss hospice care and within 24 hours the patient has his or her first visit from a nurse assigned to the case. While the nurse provides primary medical care, home health aides do bathing, light housekeeping and other chores. They teach and assist the family so they know what to do when the hospice workers aren't there. A social worker visits to assess whether the patient or family need counseling and whether they desire pastoral care. Respite volunteers give the caregiver a break for a few hours or even a few days. Volunteers work six hours a week minimum, doing "anything that will relieve the weight of what's going on in the house," Noggle says.
Hospice of the Valley has 31 paid employees, including nurses, social workers, home health aides and various administrators. They also have 25 patient-care volunteers, three pastoral-care volunteers and several others who work in the office. The hospice team extends beyond those who provide direct care to a 17-member board of directors, dozens of fundraising volunteers, a service league and volunteers who work for the hospice's Price Charming thrift store.
For all of these services, patients pay nothing. Hospice of the Valley seeks reimbursement from their insurance carriers. If they have no insurance coverage, the hospice covers the cost. "We never send a bill to a patient and family," Noggle says.
Hospice of the Valley gets 75 percent of its support from insurance reimbursements. The remaining 25 percent comes from a variety of fundraising activities, including the Price Charming thrift shop, grants, memorial contributions, bequests, and responses to their mail appeals. In 1994, they initiated the "Light Up a Life" Christmas-tree lighting at Christmas in the Park, and they also have an annual "Banjo Barbecue" to raise funds. The 50-member Hospice of the Valley service league includes 11 Saratogans among its active members.
Because hospice care can be more cost-effective than hospital care, more and more patients are coming to them because it's the only option their insurance will pay for, Noggle says. In the early days, patients contacted the hospice because they liked the idea of dying at home. "Nowadays, we get referrals, and the patient and the families don't even know what the word means." However, most are grateful for the service once they have it.
Hospice patients usually don't see their doctors much. "We really are the physician's eyes and ears," Noggle says. Few doctors make house calls, and it's difficult to put a very ill patient through the ordeal of going to the doctor's office. "For what?" says Noggle, leaving unsaid that nothing can be done anyway.
The Final Days
Watching people die would seem like a grim duty. But Fabricius doesn't see it that way. "It's my mission to get this person through the last step in death," she says.
She does cry sometimes, especially if the patient is a child or a young mother, but the hospice provides a great deal of support for all its staff. It would be much more difficult if she had to go through it alone, she admits. Although Fabricius does get sad sometimes, she says, "I never get depressed about it."
Nearly all of her patients have cancer, Fabricius says. If there's anything good about cancer, it's that it usually gives patients some time to say goodbye and tie up loose ends. In the process, they develop very close and honest relationships. "Dying people don't have anything to lose--they don't have a mask on," she says.
Although they are dying, some patients feel fairly energetic once their pain is under control. While many are afraid of morphine and other strong drugs, modern medicine makes it possible to control their pain and allow them to be up and dressed and pursuing their interests. Hospice workers try to maintain the quality of life as long as possible. "That's the idea: living until you die," Noggle says.
They often help the patient handle final details, whether it's putting together a will, writing their memoirs, organizing their funeral, or making sure their loved ones will be cared for, especially in the case of parents with young children. Knowing everything is under control makes it easier for them to accept death. Noggle says.
After They Die
When a patient dies, Hospice of the Valley doesn't disappear after the funeral. The organization offers bereavement counseling and groups to help ease the transition. This service, provided free to families of hospice patients, is also available to the community at large on a sliding fee scale.
Nearly half the people in the groups come from outside the hospice, and the number of participants is growing. Hospice workers fill the need for someone to talk to beyond when other people have gone on with their lives, Noggle says.
Hospice of the Valley holds an annual memorial service at Hakone Gardens to remember patients who have died. Volunteers organize the activities and serve food. Survivor volunteers also help with mailings or do other tasks for the hospice.
Some survivors want to join the ranks of volunteers working with hospice patients. They are required to wait at least a year before they can enter hospice training. Noggle says that in hiring paid staff, she also looks for people who have not had a recent loss. "Before they can reach out to others, they need to take some time healing themselves," she says.
Dick Miller, a Saratogan who volunteers at the Price Charming thrift shop, joined a survivors group after his wife died. Twelve years later, he continues with the "Moving On" group. They have breakfast together every two weeks, go on trips, have parties and do volunteer projects together. "We just seem to really love to be together," he says. It helps to be with people who understand what he has gone through. "If it weren't for that [group], I don't know what I would have done."
For more information about Hospice of the Valley, call 947-1233 or visit the office at 1150 S. Bascom Ave., Suite 7A, San Jose.
This article appeared in the Saratoga News, February 7, 1996.
©1996 Metro Publishing, Inc. All rights reserved