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SIUE hopes its hospice volunteer training becomes model for other universities

This article first appeared in the St. Louis Beacon, Dec. 11, 2012 - James Langley, a second-year pharmacy student at Southern Illinois University at Edwardsville, didn’t quite know what to expect when he began helping to organize a hospice volunteer program.

One initial concern was whether the time and commitment needed would take away from his studies. The second concern was the thought of feeling helpless in the presence of a hospice patient when “it’s all going bad.”

In time, he discovered that the experience could be uplifting to both patients and volunteers and that the program encompasses far more than watching a person die.  He eventually took charge of the university’s hospice volunteer initiative, described as one of the nation’s largest hospice volunteer training programs. So far, nearly 300 students across the university have signed up.

To enroll in a hospice, a person must have a terminal disease with death expected within less than six months. People eventually learn that their first perceptions about hospices are far different than the reality, says Chris Herndon, an associate professor at the Pharmacy School and one of two faculty advisors to the volunteer program.

“A lot of people have this morbid, depressing view about what hospice care actually is,” he says. “It’s a philosophy of care. The sole concept is to make people comfortable and to make the last days of their lives as enjoyable and fulfilling as possible. It goes well beyond bedpans and pills.”

The university’s hospice initiative began as a class project in the pharmacy school and included several student organizations. Langley, who is president of the pharmacy school’s graduating class of 2015, is credited with helping get the initiative off the ground.

Langley, a resident of Spanish Lake, became even more committed to the program after discovering the value of hospice care to some on campus. One day, he happened to be talking to a university secretary when the topic of hospice care came up. She praised students for setting up the SIUE program, adding that her own mother had benefitted from hospice.

“She said that her family would not be where they are today had the hospice not been so supportive,” Langley says. “That motivated me to get more people involved.”

Among those on the initial committee organized by Langley was Adam Gumersheimer, a second-year pharmacy student from Columbia, Ill. His voice quivers as he talks about the program, mentioning his own personal experiences with hospice. Family members who had not been “in the best of health” got help through hospice, he says.

“I joined this organization because I want to make a difference and because of what my family has gone through. I’ve had three of my relatives go through hospice, and I feel that I should give back and help other hospice patients.”

Herndon says a minimum of 5 percent of all hospice patient care hours must be provided by certified hospice volunteers if a hospice receives reimbursement from Medicare or Medicaid.

He expects the initiative to become a model hospice training program embraced both by hospice care groups and by other universities. Typically, he says, volunteers go to specific hospices for training over several days. They may or may not be allowed to serve as volunteers in other hospice organizations without first going through training by those organizations.

The university’s approach, he says, involves online training modules that take less time to master. After completing the online material, students then take part in a group session. This approach is useful, he says, because area hospices, while providing robust training on their own, frequently lack sufficient numbers of volunteers to meet certain needs.

He says the hospices are able to draw from a diverse pool of student talent. Some might be capable of developing video diaries, while others might take part in fundraisers, perform administrative clerical work or provide patient therapy through music and art.

Even though the SIUE initiative completed its first training session less than a month ago, some other universities already are expressing interest. Among them, Herndon says, is the University of Maryland.

Joining Herndon as a faculty advisor is Miranda Wilhelm, clinical assistant professor at the pharmacy school. She says everyone is excited that the university’s computer department is working on a smartphone app to help hospice organizations reach more student volunteers in a more effective way.

“If an organization needs 10 people to assist in an activity, the app can help find the volunteers,” she says. “It can collect the names and send them to the hospice organization. Calling and asking volunteers if they can help can take a long time. This app will really speed up the process.”

Herndon noted that the number of patients choosing hospice care has grown over the past decade. The National Hospice and Palliative Care Organization reports that 1.5 million Americans were hospice patients in 2010, up from 1.3 million in 2006.  Places where patients were being served included 41 percent in private residences, 22 percent in hospice inpatient facilities, 18 percent in nursing homes, and 11 percent in hospitals. Nearly 39 percent of all hospice patients were age 85 or older and nearly 28 percent were between the ages of 75 and 84. More than 56 percent of the patients were female.

Because hospice volunteers tend to be in their 60s and 70s, there is good reason to develop a program like SIUE’s as a way to encourage younger people to get involved. He expects even more students to come forward as they realize the personal rewards from being a volunteer.

“Whether it’s bringing in the (hospice patient’s)  groceries or changing their pain meds so that they are a little bit more comfortable, the gratification you see and feel is overwhelming.”

Robert Joiner has carved a niche in providing informed reporting about a range of medical issues. He won a Dennis A. Hunt Journalism Award for the Beacon’s "Worlds Apart" series on health-care disparities. His journalism experience includes working at the St. Louis American and the St. Louis Post-Dispatch, where he was a beat reporter, wire editor, editorial writer, columnist, and member of the Washington bureau.