In summer fellowship, students pursuing health careers learn directly from the terminally ill
[M]atthew Liquori is spending his summer with dying people, and he knows what you’re thinking.
“Friends and family, when they hear, the first thing they say is, ‘Wow, that’s so depressing,'” he said. “But it’s really not.”
Far from it, the 21-year-old insists.
As part of a summer fellowship run by Union College, the incoming senior is spending eight weeks volunteering at the Joan Nicole Prince Home, a home where people with three months or fewer to live come to die in peace.
His program director calls it a crash course in death and dying — that human condition that strikes fear into the hearts of many but that future doctors, nurses and social workers will have to face head-on eventually. So why not face it sooner rather than later?
That’s how Liquori, a pre-med major at Union, recently found himself cooking chicken gizzards for a dying man and having one of his best days ever.
It was the man’s first day at the home, and the student volunteers wanted to know what he liked so they could go shopping and fill the cupboards with food he might eat. But the 51-year-old — a gaunt, depressed man on the losing end of a nearly three-year battle with rectal cancer — had no appetite and little success when he did try to eat.
“It’s a tough transition and I think he was overwhelmed and not really willing to open up to us,” Liquori recalled. “So eventually we were like, what’s your favorite food in the world? And he responded, ‘It’s this Greek gizzard soup my mom and grandmother used to make growing up that we’d always have before our big Easter feast.'”
When the students went out and came back with the ingredients for the soup, the man suddenly grew animated. He walked them through how to make his passed-down family recipe, took selfies with the students and called his mom to let her know what was happening. By the time it was ready, he was so excited he was shaking, Liquori recalled.
“It was an awesome welcome for him because right away he was like, ‘It’s gonna be OK here,'” he said. “And that was really cool. It’s days like that that aren’t depressing because you go home and you feel great, and you’re like, that was a great day.”
The Joan Nicole Prince Home is a unique operation. Only two people at a time are allowed to live at the house, a handsome little cape at the end of a quiet cul-de-sac in Scotia. That’s on purpose — any more and the home would have to be run like a medical facility, with all its rules, regulations, poking and prodding.
That’s exactly what its residents are trying to avoid, and what its founders had in mind when the home was built in 2006.
Residents know they’re dying. Their doctors know they’re dying. By the time they arrive at the home, they’ve usually tried all the treatments, cures, medication regimens and so forth. Their time is up and they know it, and they just want to die in peace.
That’s hard to do in the cold and sterile atmosphere of a hospital, or at home where a loved one may not have the mental, physical or financial wherewithal to keep them comfortable. At the Joan Nicole Prince Home and other comfort-care residences, hospice workers visit to administer medical care and volunteers handle everything else — the cooking, cleaning, bathing, help going to the bathroom, or getting in and out of bed.
The psychological relief it provided Liquori’s patient, who wished to remain anonymous due to privacy concerns, and his wife was enormous.
“I can finally relax, you know? And my wife can finally breathe,” he said Thursday, puffing a cigarette on the home’s back porch. “She doesn’t have to walk in and go did you take this medicine? Did you take that medicine? Did you take this? Do I need to change your bandages? Do I need to change your colostomy? All that stuff. We can actually be husband and wife instead of patient and caregiver.”
Volunteers are needed 24/7, and three years ago board member Carol Weisse realized she had the ideal pool of candidates: wannabe doctors, psychologists and social workers.
Weisse teaches behavioral neuroscience, death and dying, health psychology and other courses at Union College in Schenectady. Hoping to marry the home’s need for volunteers and her students’ need for hands-on experience and research, she applied for a grant and launched the Community Action, Research and Education (CARE) Summer Fellowship Program, open to students from six liberal arts colleges across the state.
Students in the program volunteer 24 to 30 hours a week for eight weeks, gaining bedside experience and completing online coursework on death, dying and palliative care along the way. They also conduct research — last year students researched the changing nutritional needs of people in the final stages of life and turned it into an educational brochure for family members visiting the home to consult.
“Health care is very focused on cure — I’m going to cure this, I’m going to treat that, I’m going to give you medicine for this,” Weisse said. “But this experience forces students to step back and realize, there isn’t always a cure, but that doesn’t mean there’s nothing we can offer to alleviate your pain, your suffering. There is healing that happens at the end of life, and being present, being comforting and attentive is a form of medicine and it does provide healing.”
Liquori and the other student volunteers feel they’ve gained more invaluable insight into human health, psychology and empathy than they ever could have gained in the classroom.
Said Yohary Fabian, a 21-year-old pre-med student at Colgate University: “I want to be a doctor, and sometimes people die and you can’t save them. Sometimes there’s a disease and the knowledge for a cure just isn’t there yet. People suffer every day and we have to learn how to cope with it.”
Elisa Smith, a social work major at Skidmore College, found value in the art of silence — learning to be quiet and attentive, and not shying away from uncomfortable conversations.
“One of the hardest things has been listening to the residents talk about their fear of what’s to come,” she said. “But I found it was really helpful to (a resident) when I would sit out on the porch with him and just listen when he tried to talk about the things he was feeling. And I would say it’s one of the most life-affirming experiences I’ve ever had.”
Weisse’s dream is to one day grow the fellowship, which relies on grant funding, beyond the three homes it currently helps in the Capital Region. In addition to the Joan Nicole Prince Home, fellowship participants have volunteered at Mary’s Haven in Saratoga Springs and Gateway House of Peace in Ballston Spa. There are 30 such homes across upstate New York.
“We’re not going to learn how to be comfortable around death without practice,” she said. “And because health care and death have been so institutionalized over the years, we don’t really have a lot of practice anymore. This is sort of changing that culture.”
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