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Students step into the end-of-life lab
Novel college course requires one-on-one contact with the elderly
Sunday, December 19, 2004

SELINSGROVE, Pa. -- Megan McDonald, 21, finally mustered the courage to pose the question:

John Beale, Post-Gazette
Andrea Cassell, 21, left, a student at Susquehanna University in Selinsgrove, visits with Ed Fulton, 91, as part of her class, "Issues at the End of Life."
Click photo for larger image.
"Are you afraid of dying?" she asked the 92-year-old man she was paired with this fall for an unusual course at Susquehanna University.

The man who resides in an assisted living facility told her death is natural. Then he floored her with his own question: "Are you afraid of dying?"

"Maybe you should be," he said. "It could happen anytime."

There are other undergraduate college courses that delve into matters involving death, but this one, "Issues at the End of Life," comes with a twist. Each student is required to work one-on-one with an elderly partner throughout the semester to create a "personal legacy" -- a collection of stories, a photo album, an oral history or some other way to sum up that person's life.

The partners can be terminally ill, like the cancer patient who worked with a student early last year before succumbing to the disease. But others are invited to participate by virtue of their advanced age -- people in their 70s, 80s or 90s, who are looking at their waning years with wry wit, in some cases, or quiet resignation.

It's a convergence between an age group that feels invincible and one that knows better. It can be so jarring that one student meeting her 90-year-old partner for the first time was moved to tears by how isolated the old woman had become.

"She gave me this really tight hug and kiss and wouldn't let me walk out the door easily," said Kim Tomaszewski, 20, a junior from Laurel, N.Y. "It was so obvious how much she missed having other people. I cried the whole way home."

Susquehanna's chaplain, the Rev. Mark Radecke, who teaches the course jointly with staff from nearby Geisinger Medical Center, isn't surprised.

"It's the direct human contact across generations," he said. "It can be intensely emotional."

Faculty in five states who teach end-of-life topics say the one-on-one requirement appears unusual, if not unique. On many campuses, "It's hard to even find an undergraduate death and dying course, let alone one that has a service component like that," said Deborah T. Gold, who teaches the subject at Duke University, in Durham, N.C.

"Higher education people don't believe undergraduates are prepared to deal with such topics or have a need for such topics," she said. "It took a long time for me to bend minds here."

Indeed, faculty at some colleges called Susquehanna's approach innovative, but others frowned on sending nonprofessionals into situations in which emotions can be raw. Even though student evaluations of the course have been overwhelmingly positive, one student penned anonymously: "People should not be homework."

Radecke disagrees. He said the elderly were not being used for scientific research and, in fact, benefited from the companionship.

Society has long been squeamish about the subject, he said, which is one reason for the course. "Isn't it ironic that one universal experience that every human being in every culture will experience is so poorly dealt with?" he asked.

In fact, it's so awkward that most of his students do not tell their senior partners that the course involves issues related to dying. The course does not require such a disclosure to the partners, who are recruited through local religious congregations or hospices.

But even students who say they never raise the subject can't help brushing against it while meeting in the partner's home weekly or every other week. Some are moved by a husband or a wife's dogged determination to care exclusively for a dying spouse until it becomes physically impossible.

Building a bond

For her legacy project, Alison Crisci, 20, a public relations major, is reading written letters, congratulatory notes and other memories into a recorder so her ailing 82-year-old partner, whose eyesight is failing, will be able to hear them. Crisci still gets nervous en route to the woman's home but comes away feeling better after each visit, having learned about her treatments, her progress or engaging in small talk "just like old friends."

"I'm learning about her living with death and the thought of death," said Crisci, a junior from Norwalk, Conn. "At age 20, death is not in my life like it will be when I'm 82 and sick."

Some students resolve to stay in touch even after the course ends and have added their partners to Christmas card lists. "You visit somebody over and over and you develop a bond," Crisci said.

That seems true for Ed Fulton, who uses a cane but has a sharp mind and a quick wit that make him seem younger than his 91 years.

He and his late wife, Edith, never had children. But in the bottom corner of a framed 1948 wedding picture, Fulton keeps a color snapshot of his partner for the course, Andrea Cassell, 21, a senior from Enola.

The two met a few years back through volunteer work that Cassell did as a freshman, and they bonded over such topics as baseball.

For the course, she is writing his remembrances from World War II, when he served in the Army infantry. "He just started telling me stories and I started taking notes," said Cassell, a public relations and German major.

His own mortality doesn't typically drift into their conversations, which occur in the assisted living facility where he resides. But he doesn't recoil from it either.

"I have no fear of death whatsoever," he told a reporter as Cassell looked on during a visit. "The way I look at it is, I've lived 91 years. I've done no one any harm. I've lived a good life. If the good Lord says I'm next on the list, I'm ready to go."

His wife's breast cancer spread and claimed her life four years after she was diagnosed in 1990. One thing that stands out from the many talks Cassell has had with Fulton was his resolve to be the sole caregiver to his wife, nearly until the end.

"He was telling me he would put her feet on top of his feet so he could maneuver her to the bathroom," Cassell said. "I couldn't believe that a man that age could, or would want to, do everything."

Fulton said it wasn't so hard. "The way I looked at it, she would have done the same for me."

A legacy in the making

Colleges offering these kinds of courses often use common discussion points like psychiatrist Elisabeth Kubler-Ross's five stages of grief -- denial, anger, bargaining, depression and acceptance. Field trips to funeral homes are arranged, and students sometimes are asked to write their own obituaries, or chronicle their or someone else's experiences with death.

Some of those characteristics are found in the Susquehanna course, whose 17 students this fall were mostly female, many of whom had experienced the loss of someone close. Radecke and medical staff from Geisinger lecture on such topics as hospice and financial issues, coping and cultural/religious issues at life's end.

But much of the grade -- 40 percent -- depends on the legacy project and a journal students keep of the experience.

Beyond being an education tool, those legacy pairings can provide hospice patients with an outlet, said Maryanne Fello, director of Forbes Hospice, who liked the idea but said she'd like to think the class was fully explained to the elderly who participate.

"Those who are close to death are often eager to be helpful, and I think this probably will tap their altruism," she said.

And in a society that tends to separate young and old, there are benefits that have nothing to do with whether or not someone is terminally ill, said Dr. Neil Ellison, director of the palliative and supportive medicine program at Geisinger Health System. Ellision, a co-instructor for the course, said the visits helped both groups "get more comfortable with each other."

On a recent Thursday evening, graphic design major Lesley Blake, 22, drove to the Shamokin Dam home of Charlotte Humphrey, 77, to deliver the fruit of a semester's labor: A framed collection of mementos including photos of Humphrey's late husband, Warren, the community's former police chief, who died of renal cell cancer several years back.

The easy conversation in a living room with a yet-to-be decorated Christmas tree had the feel of a holiday family reunion. Humphrey said her time with Blake had helped her relive memories of her husband of 50 years.

Blake beamed at the woman and said the feeling was mutual. "It's like having a third grandmother," she said.

First published on December 19, 2004 at 12:00 am
Bill Schackner can be reached at bschackner@post-gazette.com or 412-263-1977.
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