Personal Touch: Hospice care brings dignity to dying

By Lisa Sibley

David Johnson regularly receives a manicure and pedicure from Melissa Pikoos. But after the relaxing skin treatment, Johnson doesn't get up and go home. He's already at home.
At 53 years old, Johnson is dying, confined to a hospital bed--his long, rail-thin body propped up with pillows. He lives in his father's Los Gatos home, where the 77-year-old Stan Johnson serves as his son's primary caregiver.
Johnson can talk for short amounts of time without the breathing machine that's constantly beside the bed. However, the day might come when Johnson won't be able to breathe unless he has the support of ventilation.
A wheelchair sits next to the bed, but Johnson needs to be lifted into it by a home health aide. Stan can no longer pick up his son.
Pikoos, who works as a skin care specialist, volunteers with a local hospice organization on her day off, visiting patients such as Johnson. As they exchange jokes and cross-generational culture, Pikoos massages his hands and feet, and trims his cuticles and nails with a pampering, expert touch. She holds his frail hands in her smooth ones.
It's only natural for the two to chat during their bimonthly ritual, and Johnson enjoys the company. Pikoos brings with her a cup of Johnson's favorite Starbucks coffee--black and bold, no cream or sugar.
Johnson has amyotrophic lateral sclerosis, also known as Lou Gehrig's disease. The terminal illness is still a mystery to the medical community. There's no cure and the cause is unknown. Scientists don't understand why ALS affects some people and not others.
With the rapidly progressive neuromuscular disease, nerve cells degenerate and the muscles become paralyzed. Johnson's muscles are gradually weakening and wasting away, and they often twitch.
But the disease has not impaired his personality, intelligence, memory or senses. Johnson has accepted his disease and knows that he is dying. He no longer panics every time he notices himself getting weaker. He's no longer angry or depressed about his situation.
Pikoos visits Johnson regularly, but she's not his only visitor. Thanks to hospice, regular visitors include volunteer Sol Selim, a massage therapist; Saratoga resident Jeanne Fabricius, a nurse and case manager; and Lily Eliysares, a home health aide. In addition, prescriptions are delivered straight to Johnson's doorstep from Leiter's Pharmacy in San Jose.
A team of support
Throughout the Silicon Valley, there are teams of hospice professionals and volunteers at work. Hospice programs include comprehensive care on all levels--from medical and practical to emotional and spiritual--for patients and families facing a life-threatening illness. Bereavement support is offered to the family after the death of the patient.
The team includes people with a wide range of skills and interests. When a patient has an interest in music, sports, or humor, volunteer Carl Ketchum calls on the patient. Ketchum, who has been volunteering 21 years, brings with him a bag filled with tricks, including a sports bloopers video, joke books, baseball cards and his mandolin or violin. He plays both.
If a patient has questions about his or her spirituality, fears dying or wants to make peace with an estranged family member, nondenominational chaplain Jane Garrison tries to offer answers and comfort.
While forms of hospice have been present throughout history, the hospice care movement originated in 1967 with the late Dame Cicely Saunders, a British physician and social worker. As the founder of modern hospice care, she helped to establish St. Christopher's Hospice outside of London.
Saunders later introduced the idea of specialized care for the dying to students in a lecture at Yale University, which resulted in the development of hospice care as it is known today in the United States. Hospice places an emphasis on holistic, palliative care rather than curative treatment, and on quality of life rather than trying to extend it. Palliative care means care given to improve the quality of life of patients who have a serious or life-threatening disease.
The more than 3,000 hospices in the United States--at least 12 in Santa Clara County--vary in size, organization and scope of services. Some communities have several hospices from which to choose.
Hospice of the Valley is the first and oldest nonprofit hospice organization serving all of Santa Clara County. It has provided end-of-life care and bereavement support to more than 20,000 people since 1979.
"It's rewarding knowing we can journey with patients and their families through a very personal time in their lives--and do it in a way that involves compassion and feeling," says Los Gatos resident Sally Adelus, HOV's executive director.
The greatest service is done, Adelus says, when a primary physician refers a patient to hospice soon after his or her diagnosis. In order to enter hospice, patients must have a prognosis for survival of six months or less, and they have to give up all curative treatments. But hospice physicians say there's no guaranteed way to predict how long a patient has left. Many patients live longer than expected.
"The one guarantee you have when you're born into this life is that you have to leave it at some point, and hospice embraces that," says Dr. Monique Kuo, a hospice medical director who grew up in Saratoga.
The common belief is that once hospice care begins, all hope ends. Ask most people what hospice is, and they'll say hospice is where a person goes to die. Adelus takes a different view. She believes hospice awakens hope.
With more than 20 years of experience in pain management and palliative care, Adelus works to ensure that her staff helps patients die peacefully at home, surrounded by loved ones.
"Hospice doesn't prolong life," she says. "But it doesn't hasten death."
Families far away
In today's society, there are challenges that come with providing high-quality hospice care. Gone are the days when the extended family lives in the same state--let alone the same town. Adelus calls it a "caregiver crisis," meaning that often, family members don't live within close proximity to their aging loved ones.
"We have a catastrophe among us with the number of elders that are going to need end-of-life and palliative care services," she says, referring to the aging baby boomers.
Over the next 10 to 20 years, Adelus says, there will be more people requiring palliative care. HOV has already outgrown its facilities and is looking for a larger space.
Adelus attributes the heightened awareness about end-of-life care to the growing hospice movement. More terminally ill Americans request hospice care, since it provides services to relieve pain, control symptoms and offers comfort and support for patients. Patients range from newborns to centenarians.
As Miriam McCully, 100, experienced a decline in her health, she had her daughter, Diane, and granddaughter, Meghan, by her bedside. Unlike many served by hospice, these three generations lived together in their Cambrian area home.
Miriam's last days were peaceful and happy. She was pleasantly confused, hospice nurse Deni Wingate says, forgetful at times, but comfortable. She died on Nov. 22, 2005.
"We're very happy she was able to be here. She's been living close or with us since I was born," says Meghan.
Wingate checked in on the family regularly, preparing them for what to expect as Miriam continued to weaken, especially since she was no longer eating.
"You'll probably just go in there one day and find she's stopped breathing," Wingate says.
Respite workers also allowed Diane a break from caring for her mother--to visit the hairdresser, pick up groceries or have lunch with a friend.
"It's like angels descending upon you," Diane says. "At first, it's confusing--the social worker, home health aide, intake nurse, nurse, chaplain, scheduling--but then it all falls into place."
Dealing with grief
Through HOV, teams of professionals and volunteers help patients and their families deal with the whole experience of grief.
"You'll never forget," says director of bereavement services Carol Johnson. "You never have to give up a person who dies. You learn to live with it, even though you will always miss them."
Joni Furlong is raising 6-year-old Sean and his older brother, Anthony, 9, on her own. But they remember their father vividly. He was an avid 49ers fan and played sports with them in the back yard. He also played the guitar in the Los Gatos Hope Christian Church band. Every December, the Furlongs visited the Black Road farm in Los Gatos to cut down their Christmas tree.
But Tony wasn't there when Sean recently lost his first tooth or as he learns to ride a bike. Tony won't be there for the boys' birthdays, their projects at school and many other special childhood moments. Tony died in June 2005 of brain cancer.
"I'm finally coming out of the numb stage," Joni says, clutching a tissue. "And I'm figuring out, 'Oh my gosh, he's not coming back.'"
Joni doesn't watch football anymore because she associates it with her late husband. Over the past few months, she's had to hold herself together for her children. One evening when the boys were out, Joni sat around the house and just cried.
"I see the other couples ... and that was supposed to be me," she says, wiping back tears.
In addition to HOV bereavement counselors, Joni has the support of a group of young wives who have lost their spouses. There's also a group of children around Anthony's age who have lost their dads, and a group of youngsters about Sean's age. During loss-specific group meetings, they share what they've been through and can relate to one another.
With a staff of about 65 and more than 100 community volunteers, HOV accepts about 50 patients a month; 31 to 54 die each month, on average. The organization served more than 1,000 families through its bereavement program last year.
A calling
While they're not miracle workers, hospice employees are a special breed. Many are inspired to enter the profession because of experiences in their own lives.
"Having had cancer and surviving it, my life changed completely," HOV volunteer Sol Selim says. "For me, being a survivor, a lot of our patients are cancer patients, so we can talk to each other. I can empathize with them. They know I've struggled with the ups and downs. I try to bring them hope, even though they are terminal."
Los Gatos resident Victoria Wild, HOV's director of volunteer services, notes that often the family has no idea what the patient is experiencing. A trained volunteer does, and can be a confidant for the patient. Volunteers range in age from medical students in their 20s to retired community members in their 80s.
"We believe it's a calling. We don't believe it's a job. The people who stay in this field love the work," Johnson says.
Wild says hospice workers regard it as a privilege to be allowed into the homes of patients and their families. Home health aides are responsible for tasks such as sponge bathing or feeding patients. It's a difficult transition for patients who have been independent all their lives and are now in diapers or need their bedpans changed. Hospice workers know how to handle these responsibilities while allowing patients to maintain their dignity and self-respect.
Selim uses his capabilities as a certified massage therapist to make patients comfortable.
"Patients are often touch-starved," Wild says. She points out that people are sometimes afraid to touch a dying person.
Selim says his fulfillment comes from knowing he's doing something selfless for people, who may not have anyone there for them. Some volunteers choose to work with patients and families, while others serve in bereavement, community outreach, fundraising, clerical work or on HOV's board of directors.
"You can't help but get attached to the patient, but at the same time, I've learned to accept that departure is imminent," Selim says. "Even though this person will be missed, I feel I've made his or her last days comfortable. I hope that when my time comes, I will have a hospice volunteer taking care of me."
Hospice nurse Gayle Bate tries to help patients live with dignity and to redefine hope. She works with patients to establish goals, such as living until a grandson is born or a daughter's wedding day.
Social worker Brad Leary will write a letter with a patient in case the person doesn't make it until that birth or wedding. When Leary is with a patient for an extended period of time, he'll facilitate a life review with the person to help provide meaning to their existence.
"You can't be a wall; otherwise, there's no place for the relationship to start," Bate says.
In her first few visits to a patient's home, Bate knocks on the front door. After a few weeks, the family will tell her to come through the back door. Eventually, Bate lets herself into the house without even knocking.
"We end up really becoming part of the family," she says.
Suicide not an option
When the U.S. Supreme Court decided to uphold Oregon's physician-assisted suicide law in January, it brought the topic to the forefront again.
The decision generated speculation about the possibility of California passing a similar law. The National Hospice & Palliative Care Organization and California Hospice & Palliative Care Organization have both released statements opposing legislation that would legalize physician-assisted suicide.
Adelus says the focus shouldn't be about physician-assisted suicide; it should be about bringing good palliative care to all medical and nursing training programs.
"There will always be a small group of people who perhaps desire physician-assisted suicide," Adelus says. "But for the vast majority of people not only in our state but nationally, the problem is they are not getting early access to good palliative care."
Adelus says her staff is trained to find out why a patient is inquiring about physician-assisted suicide. Are they in pain? Are they depressed?
The staff members can also turn to their co-workers, who are part of a team approach to aid the patient.
Once the patients understand they will not be abandoned and will receive good, quality care, Adelus says the topic of physician-assisted suicide usually is never brought up again.
Project Journey begins
The word "hospice" means a resting place for travelers or pilgrims and comes from the Latin word "hospitium" or guest house. But in the late 1970s, hospice was an unfamiliar term. People often confused the word hospice with hostel. There were few in-patient hospice facilities, hospitals with hospice wards or in-home care programs.
When Los Gatos resident Jennie Magid lost her husband to cancer in April 1975, her world turned upside down. He was a well-known physician who taught at Stanford.
"I had a lifeboat of support around me, and it wasn't enough," Magid recalls. "I saw that other people didn't have what I had. My friends were my life raft. I still envision it as a life raft, with all my friends supporting it."
So she called upon some of those friends, including Saratoga residents Gay Crawford and Grace Parker. The group included a handful of leaders and visionaries, volunteer nurses and doctors with a dream called Project Journey.
The dream was to bring hospice care to the West Valley. At first there was no money and no plan.
The initial gatherings began in individual homes and evolved to meetings at St. Andrew's Episcopal Church in Saratoga. The Rev. Roy Strasburger, who was the pastor at the time, and Crawford put together a planning board. With the help of the late Helen Hansen, who was the executive director of Catholic Social Services, the organization eventually gained insurance, management and an office on The Alameda in San Jose.
"This project was unique because it was a new idea, which met a need and started from a rather revolutionary idea--dying at home with loved ones," Crawford says.
Hospice became an acceptable way of addressing the taboo subject of dying, Crawford adds. Patient services started in 1980 with an all-volunteer team of physicians, nurses, respite workers, a social worker and a chaplain. The first funding was an $18,000 grant from the Junior League of San Jose.
"We didn't know we couldn't do it," Parker remembers.
Magid's son brought the Flying Karamazov Brothers to the Old Town Theater in Los Gatos, where the first benefit raised $2,500 for Project Journey. By 1982, the program had received its nonprofit status.
The agency now gets reimbursement from Medicare and Medi-Cal and accepts private insurance. It relies on fundraising contributions for patients without insurance. Adelus says 40 percent of HOV's expenses are covered by donations.
Dr. Robert Reid, who is now retired, was a volunteer physician with Project Journey.
"You would recommend hospice to the family, and initially people didn't know anything about it," he says. "It was so new."
Reid remembers resorting to bromptoms, a mixture of morphine and cocaine for analgesia in terminal cancer patients. There were few drugs for treating cancer in those days, and few remedies for pain management.
Reid also helped to change the organization's name from Project Journey to Hospice of the Valley.
"I came up with lilies of the valley. There was a movie before I was born where people are taken out to this valley and decide how and when they want to die," he says. "So I decided Hospice of the Valley, but we were not talking about Santa Clara Valley. We were talking about a peaceful valley of flowers."
Today, the name encompasses all of Santa Clara Valley. Crawford, Magid and Parker say the program has grown into exactly what they envisioned.
For a complete list of Santa Clara County hospice organizations, visit the California Hospice & Palliative Care Organization's website at www.calhospice.org. For more information about Hospice of the Valley or to make a contribution to the organization, call 408.947.1233 or visit www.hospicevalley.org.