As our population changes and ages, the health care system must rely heavily on caregivers to be critical partners in the treatment of patients. Given the financial, physical and emotional stress of caregiving, more needs to be done to recognize and support the millions of families dedicated to caring for loved ones each day.
In response, Osler Society of the Donald and Barbara Zucker School of Medicine hosted “A Caregivers Voice”–a program welcoming caregivers from throughout the local community to bond and share their stories, concerns, and struggles in managing the needs of an ill family member.
The event, which took place on April 11, 2018, opened with a live performance of a song written by a caregiver and performed by a professional vocalist along with keyboard and violin accompaniment. It continued with medical student presentations of poignant selections from fifteen narratives and poems contributed by participant caregivers who came from all over the New York metropolitan area. Each of the stories offered a glimpse into the struggles and heart of the caregiver, and several evoked a great deal of emotion among audience members, many feeling finally heard and most importantly, no longer alone for the first time. The well-received effort was designed to not only help caregivers but also encourage current and future medical professionals to develop greater empathy and communication skills with patients and their caregivers.
“We want to do the pieces justice,” said Michael Jin, a reader and third-year medical student at the Zucker School of Medicine. “The medical students did an excellent job of telling the stories,” commented attendee Diane Dellilune, a nurse at Northwell Health’s Monter Cancer Center, “you can almost feel the pain they spoke of.”
During the program, participant students had the opportunity to hear and understand the vital role that caregivers play in patient well-being. Caregivers explained that tending to the daily needs of a loved one and their close relationship allows them to provide physicians with a unique perspective when considering approaches to care and treatment. In addition, while caregivers pointed to tremendous love as the source of strength needed to carry on day in and day out, they also admitted to exhaustion, depression, despair, and even guilt for often wanting to “escape” or simply needing a small bit of time for themselves. Asked Zucker School of Medicine MD/PhD student Ashley Barlev, “How can we as future doctors do more to support the caregivers?” The students learned that patient wellness depends upon the quality of the partnership that physicians forge with the caregivers.
Performances at the event were followed by a lively interactive panel discussion led by palliative care physicians and social workers who work with patients and caregivers on a daily basis, three of whom also had been the primary caregivers to elderly or ill parents and siblings while practicing.
“It really was special. You could see and feel that it was not only special for the caregivers, but for the medical students, professionals, family, and friends,” said Esther Rotter, a caregiver, and participant at the event. “Sharing our words that described our lives, our emotions, was something I had not experienced before as a caregiver.”
For more information about the Osler Society and the Humanities in Medicine Program at the Zucker School of Medicine, visit online at medicine.hofstra.edu.