By Kristin Schultz
Four college seniors spent their summer willingly working with something most people try to outrun: death.
For an eight-week stretch this summer, these students have worked nearly full-time at two of New York state’s 30 comfort care homes, or homes for the dying, as part of a fellowship program started by Union College’s Carol Weisse in 2015. Skidmore College came alongside last year.
The program is called CARE, which stands for Community Action, Research and Education. The goal is to give students an opportunity to experience palliative patient care and perform research for the benefit of the comfort homes. They also meet weekly and work through educational modules on end-of-life care.
“In our culture, we ignore death,” said Colgate University student Yohary Fabian of Colonie. “Here, I learned it’s OK to talk about death. It doesn’t have to be scary. It can be peaceful.”
Students volunteered at the Joan Nicole Prince Home in Scotia and Mary’s Haven in Saratoga Springs. These homes are not medical or clinical facilities. Rather, they are typical homes in neighborhoods. The homes can accommodate two residents at one time. Care is round-the-clock and there is no charge to stay.
To qualify for a room in a comfort-care home, a person must be enrolled with Hospice, have a do-not-resuscitate order and be terminally ill with a prognosis of no more than three months.
The residents who move into the comfort-care homes want to spend their final days in a home setting but cannot be in their own homes for safety or financial reasons.
“Sometimes the caretakers are frail or sick themselves or family members live a long distance away,” said Weisse, a Union College professor and the program coordinator. “Some lack the resources to pay for 24-hour care.”
Hospice provides the clinical care via traveling and visiting staff. The on-site volunteers administer medication and communicate with hospice as necessary.
‘Not a scary place’
The Joan Nicole Prince Home is in a subdivision on a large corner lot with a gently sloping green lawn and a flower garden off the back deck. The open-concept floor plan combines the family room, dining room and kitchen, where residents and volunteers go about the business of life: cooking meals, baking desserts, chatting over a cup of coffee.
“It’s not a scary place,” said Anna Fraher, assistant director and volunteer coordinator.
There are shelves in the sunlight-filled front room just off the foyer stocked with handmade jarred candles available for purchase with proceeds going to the home.
Betty Grummons is the home’s newest resident. She moved in on Monday, July 31. Her room faces the back garden. Like the other resident room, Betty’s has hardwood floors, a generous closet, a television and an attached bathroom with a walk-in shower. Her clothes hang in the closet and there are personal items displayed around the room.
The only signs that Betty is sick are the hospital bed and rolling tray, which Fraher noted are necessary for the volunteers to care for the residents as their health declines.
Betty was not in her room, but was sitting at the kitchen table with Skidmore student Elisa Smith.
“The coffee is very good,” Betty said, noting that she put an ice cube in the coffee to cool it off. She also takes cream and sugar.
Smith, of Gloucester, Massachusetts, talked to Betty about how she was settling in, asked Betty what her favorite color is and discussed the possibility of painting Betty’s fingernails later on.
In addition to providing emotional support to the residents, the students were trained on providing basic care, including changing personal hygiene items, giving bed baths and turning residents who are confined to bed.
While the homes are staffed 24 hours per day, only the overnight personnel are paid. From 7 a.m. to 11 p.m., volunteers are on site doing housework or simply being with the residents.
Each college student spent approximately 24 hour per week at their assigned homes.
‘A term abroad in own backyard’
“It’s an immersive experience,” said Weisse. “I wanted to create a term abroad in your own backyard.”
The corresponding curriculum educates students on the particulars of caring for the dying and their families. Students are also responsible for a research project. Fabian, the Colgate student, looked at how satisfied family members were with the home care givers. He shared his findings with the Joan Nicole Prince Home for their reference.
Sydney Keane a Union College student from Glastonbury, Connecticut, evaluated the training that volunteers undergo and concluded that classes featuring a training mannequin were more effective and built greater confidence in volunteers and improved patient safety than those that didn’t have a mannequin available. She turned her research over to Mary’s Haven and the home is now applying for a grant to pay for a mannequin.
Kristen St. Andrews, another Union student and a Schenectady resident, evaluated residents’ existential suffering and suggested ways to train volunteers in the best ways to help residents who are feeling guilt, anxiety, questioning their value or purpose or wrestling with the loss of independence.
Smith, the Skidmore student, looked at the impact of volunteering in end-of-life care situations on the volunteer. She found volunteers reported an increased comfort level with death as well as feeling like their work made a difference. She wants to use her findings to inspire more people to volunteer their time with people facing their last days.
Connecting with people
All of the students plan to pursue careers in health care and they all reported that their experiences only reaffirmed their chosen careers.
“Dying people are still living,” said Smith. “We help them live and that’s pretty beautiful.”
The students learned more than just what they reported in their research findings.
“I had the chance to connect with different people with different faiths,” said St. Andrews.
They also saw up close the need for greater palliative care in medical school. Doctors and nurses receive extensive training on how to fix problems and very little training on how to treat a patient for whom there is no fixing the problem.
“Behind the disease there is an actual human being,” said Fabian.
Sidney agreed, “It’s important to view the person as a whole person.”
As a whole person, the terminally ill deserve to be treated with dignity and respect and that is what the staff and volunteers at comfort care homes strive for. They create a place where residents feel safe and supported, where family members can simply visit and connect with their loved ones while others worry about the practicalities of care.
Residents share life lessons and have a chance to leave a legacy with volunteers and caretakers. Everybody makes a difference. Smith plans to continue volunteering even as she pursues a career in social work or nursing school. Fabian plans to pursue family medicine while Keane and St. Andrews plan to attend school to become physician assistants.
Wherever they go, each will take their comfort care home experiences with them knowing that death is merely a part of life.