For hospices, an infusion of youth

Spurred by personal stories, volunteers help ease the final days

BROOKLINE - "You look very pretty today," Rachel Kunkler sings out cheerily to 93-year-old Esther Goldman as she enters her room in a nursing home.

Goldman does not react, at least outwardly. She sits in a wheelchair, her head against a white pillow, her right elbow propped on a red cushion. Her diagnosis - dementia and what doctors call "a decline in health" - qualifies her for hospice care. Kunkler, a 20-year-old student at Boston University, perches on a bed next to her, doing her best to bring some light into Goldman's eyes through sheer youthful ebullience and force of personality.

"It's really nice outside," she informs the older woman, but then concedes it's a bit chilly. Goldman says wearily: "I wouldn't go outside in this weather." But Kunkler has a ready, joshing reply: "We had to go outside to come see you!"

There was a time when Kunkler would not have fit the typical profile for a hospice volunteer. But that profile is changing, as young people who saw what it did for their grandparents or other relatives step up to do what they can to ease the final days of other dying patients. There are other factors, of course, including Internet-savvy outreach by the hospices (which advertise on websites like Craigslist) and community-service requirements at colleges and high schools.

At Charlestown-based Beacon Hospice, the largest hospice organization in New England, the number of volunteers in their teens or 20s has increased by nearly 80 percent in the past year, according to Rob Buckel, vice president of volunteer services. Of 750 volunteers at Beacon Hospice, 150 are now in that age group. At Care Alternatives, a Marlborough-based hospice that serves a wide geographic swath of Eastern and Central Massachusetts, the number of volunteers in their teens or 20s has jumped by 60 percent in the past year, according to volunteer coordinator Ericka Falvo. Of the 85 volunteers at Care Alternatives, 23 of them are aged 18 to 29.

The surge has come from an even younger demographic at the Hospice of the Florida Suncoast, the largest nonprofit hospice organization in the Sunshine State. Kathy Roble, director of volunteers, says there has been a "huge jump" over the past two years in the number of teenagers signing up as hospice volunteers, to the point that they now constitute more than 10 percent of the hospice's 3,000 volunteers.

Nationally, "The age and demographics for hospice volunteers is widening as hospices serve more and more families," says Jon Radulovic, spokesman for the National Hospice and Palliative Care Organization, though he says there are no specific data on the increase in young hospice volunteers.

For Kunkler, the impetus was the death three years ago of her beloved grandmother at age 83 in Maryland. It was a loss made a bit more bearable by the attentive hospice care she received for the last five months of her life, and by the group therapy a hospice provided for Kunkler and her family.

"When somebody is hanging by a thread for a really long time, it's important to have a support system beyond the family," says Kunkler, her eyes misting over. "They did a really good job in managing her pain. That kindled my interest in doing for other families what was done for me. I always wanted to do hospice volunteering since my grandmother died."

Kunkler visits Goldman twice a week. She plans to attend medical school, so her hospice volunteering gives her a sense of the challenges ahead as well as the rewards. "You can't fix people with a terminal illness, but you can help them and their families," she says.

Aimee Peden is nodding as Kunkler speaks. Peden, 26, is the volunteer coordinator at Beacon Hospice, but less than two years ago she was a novice herself. She plunged into volunteering because she wanted to challenge herself at the deepest possible level.

At first, Peden admits, "I was a little scared by the idea. I felt I wouldn't be good support. But once I started to do it, it came to me."

Her first assignment was with an elderly man with Alzheimer's disease. "I began to realize how much difference you can make in the patient's life, and in the family's life," Peden says. "At the moment of death, I was able to comfort him. I held his hand and told him, 'I'm here with you.' "

That, in a nutshell, is the role of a hospice volunteer. They primarily provide companionship to terminally ill patients in nursing homes, hospitals, or the patients' own homes, in visits coordinated by the hospices. The medical aspects, such as pain management, are handled by physicians and nurses. Depending on the needs of the patient and the family, therapists, home health aides, social workers, and clergy may also be involved. But the volunteer is the friendly - and, increasingly, youthful - face of hospice care.

"They may not know the answer to every question, and they may not be comfortable in every situation, but they're driven by a deep and genuine desire to be there, to be present," says Buckel. "And that speaks to patients and families."

Roble, of the Florida hospice, says that sheer youth is another asset that young volunteers bring to the task of hospice care. "They're nonjudgmental, and they're very open to situations," she says. "They don't, as adults might, see themselves in the bed as a dying person. They just pick up everything the patients and the family is telling them."

However, it can be a tricky balancing act for young volunteers. They have to go into patients' rooms with a plan for what they want to accomplish on that visit, but they also have to be prepared to improvise. Making eye contact is key, as are compassion and friendliness, but so is the ability to, for instance, use a family photograph in the patient's room as a springboard into fresh conversational territory.

Volunteers must be ready to explain their role to family members and to know where that role ends and the role of medical professionals and social workers begins. To ensure that they understand where the lines are, Beacon Hospice requires volunteers to undergo an extensive training course. Their first patient visits are supervised by Beacon Hospice staffers.

They must cope with patients who may be nonverbal, combative, or who simply may not remember them from one visit to the next. "I had trouble with the idea of this at first," admits Kunkler. "You can't go in and say, 'I want to do A, B, and C.' People with dementia and Alzheimer's have good days and bad days."

This recent afternoon does not seem to be a particularly good day for Esther Goldman.

Her eyes remain closed for much of Kunkler's visit, but that doesn't deter the young woman. Kunkler asks Goldman whether she has eaten lunch. She asks whether she is in any pain. She asks about Goldman's children, who visit her regularly. At one point, Kunkler dons a blue jacket, and asks her: "Do you like this color? What's your favorite color?" "Pink," Goldman replies, her voice barely audible. "Pink? I like pink," Kunkler says. "I like blue better." Goldman closes her eyes. "I'm tired," she says.

Kunkler lowers her voice sympathetically. "Did you take any naps today?" she asks. She makes a bit more chitchat about the weather, then stands to say farewell. "Have a good dinner today, and I'll see you very soon," she tells Goldman.

Does any of it really register? Does it mean anything at all to the patient? Kunkler says yes. Another thing she is sure of is that it means something to her. "It's a validation for me that I really am very good at this," Kunkler says. "I really feel that this is what I was born to do."

Don Aucoin can be reached at Aucoin@globe.com.