Help at the end

Eighty percent of Americans die in hospitals, nursing homes and hospices, and increasing numbers of them receive bedside care from specially trained volunteers as well as health professionals. Now a summer fellowship offered jointly by Skidmore and Union colleges helps qualified students participate in CARE (Community Action, Research and Education), an eight-week, full-time, structured program of community service and research that builds the emotional, intellectual, and hands-on skills to support people while they die.

CARE provides a stipend, enabling students to focus their summer energies on the program without juggling competing coursework or employment. The program was conceived by Union College's director of health professions, Carol Weisse, and was further developed by Skidmore social-work professor and associate dean of the faculty Crystal Moore. Both have deep experience and dedication to end-of-life care, and both are so moved by students' experiences that they oversee CARE as volunteers.

Students can join CARE through the New York Six consortium, which includes Skidmore, Union and four other upstate colleges. In readings, journaling and meetings with professors and care-givers, the CARE syllabus addresses topics such as loss and grief, dignity at the end of life, the challenges and burdens of caregivers and working in an interdisciplinary team, but the centerpiece of the program is hands-on service. Students placed in end-of-life agencies take on the role of a surrogate family member, providing care from feeding and toileting to bathing and dressing. Sometimes they hold the hand of a person as he or she dies, or they talk with grieving family members.

"I'm a keen believer in caregiving and aiding others, and this provides a chance for me to develop characteristics such as attentiveness and patience," says Skidmore's Jason Bourdier '18, who is majoring in health and exercise sciences. "I want to be a positive figure or presence in the life of the residents, as well as learn valuable lessons."

One lesson that impressed him: "It is very difficult to accept the loss of strength that comes with illness and old age, especially in the presence of family and friends. People don't like that they are no longer capable of performing simple daily tasks. One resident was distraught when I brought her juice in a 'sippy cup' because she had trouble lifting a glass without spilling."

Weisse says, "Students' narratives about personal transformation are eye-opening," but valuable research is also conducted and shared. In one instance, Skidmore students were approached by a family member who saw food left over and said, "You're not feeding my mother." This prompted two nutrition majors to study eating at the end of life, including issues related to pain and appetite. As a result of their research, residents and families received helpful information, and a pamphlet was created for future use.

"CARE is academic and applied, but also spiritual," says Weisse. "Students meet with each other, with faculty, and with other professionals so they can share and process what they're learning." Moore has seen "students fall in love with working with patients at the end of life" and hopes they see the field as a fulfilling career option. "We get students interested in social welfare, nursing, psychology ... and they become passionate and motivated. It's not about medical issues, but about being present in the face of suffering and about compassion, problem-solving and ethics. Also, students learn how to normalize the experience of dying." She says, "It takes courage and steadfast presence, but it's a great service."

Catherine Adams, a physician on the palliative care team at Albany's St. Peter's Hospital, had "a wonderful experience meeting with the students." Palliative care is a new, team-based specialty providing "an extra layer of support to patients and families dealing with a serious illness such as cancer, dementia or heart failure. "Because it's so new, it's important to educate future health care professionals about palliative care and hospice services." She reports that when CARE students asked how she copes with end-of-life care every day, she told them, "It's because I accept that even if we cannot cure, there are many things we can do to relieve suffering. CARE students learn firsthand the importance of listening to the patient's fears and being present for the family."

Elisa Smith '18, studying social work and French, recently lost a friend to suicide and has a grandparent with dementia. She reflects, "Death is the ultimate unknown, so we are fascinated; however, we are simultaneously terrified of the physical and emotional pain it may bring. This summer program has been life-affirming and inspired me to want to care for people. I think I have touched residents in ways that heightened their ability to see beauty even while they are dying." In holding the hand of sleeping patient, she says she tried "to transfer my care through human touch and make him feel respected and valued." When an artist with brain cancer sketched her, "it felt special to contribute to his creativity and to empower his well-being and sense of dignity." Such moments have taught her "to value human touch and to remain in tune with all the senses."

Exercise science major and biology minor Astrid Rodriguez '18 intends to become a nurse practitioner and has volunteered at hospitals. As a CARE fellow last summer, she learned that "death is not a subject that people should steer away from ... everybody has to face it."

Union College biology major Matt Liquori says his understandings have grown more from "the emotional and social interactions I've witnessed than from the actual medical care I've seen delivered." In one "gut-wrenching" interaction, a resident was hallucinating and combative, and his wife was very upset until Liquori intervened and calmed her down, with the incident ending in a hug. Liquori says, "This really highlighted the emotional challenges families face coping with an impending loss." —Helen Edelman '74