Ogul Uner (C’17) has never seen a person die. The group of students who volunteered a year before him did.
For the members of SHOOP, the Student Hospice Organization of Penn, death is part of their routine. Thy volunteer at hospice centers in Philadelphia and Wissahockon, Pennsylvania to provide comfort and company to patients. People are admitted to hospice wards when their doctors have diagnosed them with less than six months left to live and they decide to stop pursuing medical treatment.
SHOOP volunteers must assume that each person they talk to in hospice will pass away within a few months, and they make it their mission to take the patients’ mind off of their prognosis. Because the focus of hospice care isn’t on getting physically well again, there is a greater importance on emotional well–being and security.
“We’re really just a friend for them at the end of their life,” said Sophie Pan, the current SHOOP Co–President.
Many Penn students who aspire for a career in medicine can expect patient death to be an inevitable part of their career, but most don’t actively embrace that aspect of the field. SHOOP boasts between 20–30 active volunteers, most of whom are pre–med. Students in the club frequently lose patients they have volunteered with—sometimes for months—but they search for a silver lining.
“Instead of saying it’s the end of life, we say we’re celebrating life,” Sophie explained, “because when you have so few days left you want to make the most of it.”
Inside a hospice ward
Unlike other medical volunteerships, which often require prescribed duties (clean bedpans, file paperwork, replace sheets, etc.), most of hospice care is simply closeness and connection. You can't really teach how to be a good hospice volunteer.
Eric Trumbower, the manager of volunteer services at Penn Wissahickon Hospice, has overseen several SHOOP members. He tried to describe the common thread between all hospice volunteers. They are old souls, he said. They are compassionate and are generally the least anxious person in the room.
“It attracts people who realize what it means to be human, what it means to be alive,” he finally settled on.
Few of the patients can walk, so the volunteers usually bond with them from their beds. If a patient can’t speak, the volunteer may talk to them or just keep them company. Although a hospice ward generally resembles a hospital environment, SHOOP volunteers try to distract the patients from their surroundings. Ideally, a hospice ward will be calm and reflective, but it can also be tumultuous.
“It is by no means a happy place. Our patients are dying, and there is a lot of death that occurs there,” said Trumbower. “Now, with all that being said, it can range from a peaceful, calm and quiet space to sometimes a little bit more tumultuous and erratic.”
Many of the patients that enter hospice are in chronic pain and anxious about the end of their life. These strong emotions can create a hectic atmosphere. It's the job of the volunteers to make that chaos more welcoming.
Becoming a volunteer
Ogul, a board member of SHOOP, described most of his volunteer experiences as one long ongoing conversation. When working in a long–term care facility, he even formed relationships with patients’ family members.
However, some patients are unable or unwilling to talk. Cathy Liu (C’19), a member of SHOOP, defines patients in two ways: responsive and unresponsive. Most unresponsive patients can no longer understand conversation. Cathy sits with them and sometimes tells them about her day. Even though they can’t communicate, she thinks that just seeing a volunteer can improve their surroundings. In similar situations, Ogul has devised ways to break through to uncommunicative patients, such as making flashcards with symbols like happy and sad faces.
Hospice volunteer rules state that workers cannot have recently experienced the death of a loved one within one year of working in palliative care, as the circumstances are too personal. For both Sophie and Ogul, the death of a close relative—a grandparent, each—was a pivotal factor in their interest in hospice care. This is a common narrative between many members of SHOOP, and hospice volunteers in general.
Although the expectation for patients is that they will end their lives in hospice, that isn’t always the case. Some hospice patients recuperate enough to graduate from hospice care. Studies show that the benefits of hospice—less anxiety, comfort, constant monitoring—can actually lengthen lifespans of terminally ill people.
However, volunteers have to deal with their patients who confirm their doctor’s prognosis and pass away within six months. Hospice volunteers are coached not to form an emotional attachment to their patients.
“You definitely feel something when you come in and you don’t have that patient in anymore,” Ogul said. He stressed the importance of setting professional boundaries with patients.
When Cathy first started as a hospice volunteer, she struggled not to become emotional when her patients died. Now she limits her time, spending no more than four hours a week with a patient to maintain some distance.
“I learned my lesson, and I try not to go too often,” she said.
Ultimately, most hospice volunteers are interested in medicine because of the potential to cure a disease, repair an injury, and restore health. But the realities of hospice can be humbling.
“We want to be doctors because we want to save lives, and that is the ultimate goal,” Sophie said, “but it’s also important to recognize that medicine is limited and we’re never going to cure everything out there.”