Circle of Life
Signaling a shift in perceptions about death, hospice programs - and nurses - offer dying patients a more fulfilling and comfortable way to spend their final days

By Heather Stringer
October 28, 2002


Jeanne pulls up in front of a seemingly indistinct gray duplex on a block of tattered homes in San Jose, Calif. She peers through the screen door and scans the room, looking for 11-year-old Antonio.

The boy appears to be nowhere in sight, until her eyes fasten on a motionless lump on the couch. She enters, and prods Antonio gently. His heavy eyes open briefly. Jeanne and the boy's relatives smile with nervous relief-and with good reason.

Each of Antonio's naps could be his last. Doctors didn't expect the boy to survive through the week, and Jeanne, a hospice nurse, had been charged with making his final days as enjoyable as possible.

Antonio Cancilla was a candidate for a third heart transplant, but he had grown to loathe the life confined to monitors and white walls. The sixth-grader knew another heart wouldn't fix his problem and finally confided in his uncle that he didn't want to go back to the hospital anymore.

Both were relieved when doctors introduced them to hospice, a program that would shift the focus from finding a cure to enjoying Antonio's remaining days. Jeanne Fabricius [fah-BREE-she-us], RN, a nurse with Hospice of the Valley in San Jose, was visiting twice a week to ensure that Antonio wasn't in pain and to check in with his uncle, who was the primary caregiver.

Like many hospice patients, Antonio and his uncle Anthony wished they'd known about hospice before the final weeks of the boy's life. Other patients are driven away by misconceptions about this form of care. For some, it's perceived as a dismal failure to conquer a disease. For others, it's a place people go to die. Yet nurses such as Fabricius contend that this couldn't be further from the truth.

Hospice nurses see their mission as helping people to fully live their final days or months. The nurses interviewed by NURSEWEEK agreed that when families wait too long to seek hospice, it not only increases the acuity of the patient's illness, but also severely limits the patient's ability to fulfill their final wishes for connecting with loved ones. As a result, many hospice administrators are looking to the future with trepidation. They foresee an aging baby boomer population with increased acuity levels flooding hospice programs in the midst of a nursing shortage.

Although nurses like Fabricius are eager to see patients turn to hospice sooner, they acknowledge that they are butting against society's deeply engrained denial of death. Fabricius remembers seeing this denial as soon as she began nursing in the 1970s. She saw doctors and families avoid the topic of death at the expense of the patients.

"I felt people died very lonely because family and doctors didn't bring it up," she said. "The patients knew they were dying, but nobody would talk about it. People think they are protecting the dying person, but really they are protecting themselves. I thought there must be a better way to die."

A new philosophy

About 30 years ago, caregivers in England began tinkering with a new approach to dying. They started to offer patients the option of hospice care via residential hospice facilities, where families could send their loved ones. But the trend shifted slightly as it migrated to the United States. Here, home hospice care rose to popularity rather than residential facilities.

Now, more than 3,000 hospice programs operate throughout the country, and 96 percent of those programs provide routine home care, according to the National Hospice and Palliative Care Organization. In order to qualify for hospice, most programs follow Medicare's requirement that a patient must have a prognosis of six months or less if the illness were to run its natural course.

To help families cope with the reality of losing a loved one, hospice programs usually provide not only a nurse, but also a social worker, a chaplain and other volunteers who can do everything from massages to housecleaning.

For many nurses who now work in hospice, this new philosophy is a brilliant alternative to the mentality they've seen in hospitals.

"Hospice acknowledged that dying is as much a medical specialty as birth," said Virginia Shubert, MN, CHPN, RN, executive director of Yolo Hospice in Davis, Calif. "It is about making dying a natural part of the life cycle. Dying is not a medical problem."

About 600,000 Americans died while in hospice care in 2000, which is about one out of every four deaths, according to the NHPCO. But hospice administrators expect this number to swell significantly as the baby boomers continue to age.

Some hospices already are feeling the pressure because demand is increasing at the same time that nurses are harder to come by. Hospice of the Valley in San Jose recently had two nurse openings, and advertised the positions for six months before they were filled. Usually, it takes about a month to six weeks, said Jessica Klinghoffer, MA, RN, executive director of the hospice.

"In the [San Francisco] Bay Area, there are a number of hospitals that are just crying for nurses, so we are all looking at the same candidates," she said.

Although it can be difficult to fill positions, most hospice administrators agree that they have one advantage over hospitals: low turnover rates. Klinghoffer said that once nurses discover the hospice field, few leave.

"It's one of the places a nurse can do what he or she went to nursing school for in the first place," Klinghoffer said. "In hospice, they have the tools, time, respect and support to be treated as professionals. They work independently and can make crucial decisions."

These reasons are why Fabricius never looked back once she discovered hospice nursing. She also cherishes the occasional chance to deliver something unexpected.

While at the Cancilla residence, Jeanne slips an envelope to Anthony's side of the table. Her co-worker landed extra free tickets to the Great America theme park and Jeanne knew exactly who should have them. The uncle is almost reluctant to accept the gift, but he finally opens the envelope and repeats several thank-you's.

For Antonio's uncle, Jeanne's visits are vital. "She explains everything step by step, and I can call any time of night," Anthony explains. "It takes a lot of pressure off."

Sometimes, she offers clinical information, like explaining that Antonio's medication causes his face and limbs to swell. Other times, she simply listens.

He's not doing well," the uncle says to her. "We sat and talked, and he keeps saying he doesn't want to die."

Fabricius admitted that experiences like this would have frustrated her in the past. Earlier in her hospice career, she questioned God's reasons for allowing the death of children. But after taking care of more than 500 patients ranging from 1 week old to 100 years old, she's found peace in knowing she can't understand why, at least for now.

"I do get sad sometimes, but I know my mission is to help patients die as comfortably as possible," she said. "I feel very fulfilled when my patients die comfortably in their own homes."

A secondary mission for hospice nurses is to offer support to caregivers who are often bewildered by a slew of new responsibilities. Deborah Gates, 48, had been married to Stephen Gates for less than two years when doctors told the couple in July that her husband's renal cancer had spread to his liver, spine and chest. Gates remembers feeling emotionally wrenched when her husband said he wanted to go fishing one last time before he died.

"Jeanne [Fabricius] told me that I shouldn't tell him 'No,' but instead to tell him 'We're seeing what we can do about that,' " Gates said.

Gates also said she felt irritated when her husband would tear off clothing she had just carefully dressed him with, but Fabricius explained that this behavior, called terminal agitation, was normal.

Consoling caregivers is a particularly crucial part of the job for Christy Torkildson, MSN, RN, coordinator of the pediatric palliative care program at University of Texas Health Science Center in San Antonio. She provides hospice-type care to children who are dying, and regularly sees just how much pain these parents experience. "Some parents do very well, but some have a hard time and it takes a long time to work through their grief," she said. "The ones who do best are the ones who embrace the experience in some way and have support and spirituality."

In many cases, it's the children who help the parents embrace the situation. Torkildson remembered one 13-year-old boy with bone cancer who recorded tapes for his little sister to open on special birthdays because he wouldn't be there. There was also a 17-year-old girl who told her mother she'd die on her birthday because this way her mother would have to be sad only one day a year. She did. Torkildson also recounted the story of a 5-year-old girl who made a will and gave her favorite toys to specific people.

"There is something incredible about working with a 5-year-old who is concerned about others and is looking forward to being with the angels," Torkildson said. "It's like working with angels on earth."

Spreading the word

Even though hospice care is a vivid experience for the nurses and families that use it, many people still are unaware that it's an option. In response, hospice organizations often use a share of their resources to spread the word about their services.

To educate families and doctors about the value of hospice, Elizabeth Ford Pitorak, MSN, APRN, CHPN, director of the Hospice Institute of Hospice of the Western Reserve in Cleveland, introduced a hospice team to Ireland Cancer Center in Cleveland, where patients receive aggressive chemotherapy. Before the team entered the center, about 13 percent of patients typically died under hospice care.

The team spent about two years with patients and, by the end of the project, about 80 percent were dying under hospice care. Pitorak hopes these experiences left an impression on families and physicians about the importance of facing death before it's too late.

"There is hard work we need to do at the end of life," she said. "We need to figure out what our meaning and purpose have been, maybe do reconciliation with someone."

Although it may mean giving up the search for a cure, Pitorak has seen the fruits of making this difficult decision. "I am absolutely amazed when patients say the last two months of their lives have been the best ones."

While hospice nurses are eager to point more people to the benefits of their services, increased awareness will likely heighten demand for RNs who provide hospice care. Kathy Egan, MA, CHPN, RN, vice president of The Hospice of the Florida Suncoast, works for an organization that's experimenting with new ways to handle patient loads.

One idea is to spread some of a nurse's responsibilities to other people in the hospice team. For example, they could train volunteers to help patients with bathing or eating, rather than leaving these tasks to the nurse. This would free up nurses to focus on other responsibilities, such as pain management.

The Florida hospice also is partnering with community organizations to train volunteers who can help hospice families with daily life, activities such as grocery shopping, cooking or providing respite for caregivers.

"We need to plan ahead so we are ready to serve the future population, and these are ways to get more people helping," Egan said.

Nurses like Fabricius are among the few who know just how much emotional and logistical help these families need.

At Gates' home, the living room that was a flurry of activity just six days ago is now empty and quiet. Fabricius sits with Gates at a kitchen table as the recent widow recounts the story of her husband's death-and the nurse's vital role until the end.

"Her compassion for me was amazing," Gates said as her eyes filled with tears. "She gave me the tools I needed to care for him, but the first thing she did was to give me a hug. She was not here just as a nurse, but as a friend. I will never forget that."

Contact Heather Stringer at heathers@nurseweek.com