Volunteers take turns spending time with terminally ill patients in their final days.
When patients are alone in the final moments of their lives, volunteers for Jefferson’s No One Dies Alone (NODA) program do everything in their power to surround them with the companionship and compassion they deserve.
NODA is an interprofessional group made up of Jefferson students and staff who are called upon by a patient’s care team or family when needed. Volunteers take turns spending time with terminally ill patients in their final days, offering support and compassion by reading books, playing music or simply sitting with the patient.
“NODA is a prime example of how even when a disease is incurable, the care for the individual remains,” says Michael Kaufman, 2018-19 president of NODA and Sidney Kimmel Medical College student. “Even when patients are unconscious or unresponsive, we believe they hear our music, poetry and calming words, feel us when we hold their hand, and know that they are not alone.”
While NODA was established in 2001 at Sacred Heart Medical Center in Oregon and has since expanded globally, Dr. Kathryn McGrath, family medicine physician, began the program at Jefferson in 2016 as part of her fellowship. She and her co-fellow assessed the resources needed and gathered support for the idea by speaking with nurses, pastoral care chaplains and physicians.
“We then recruited what turned out to be a highly motivated group of student leaders who trusted and believed in our vision to make NODA a student-driven effort,” Dr. McGrath recalls. “That dedicated group took the reins and has been leading our mission ever since. I think it’s a testament to the type of community we have here at Jefferson.”
Since its start, NODA has recruited more than 130 student and employee volunteers from diverse backgrounds and specialties and has helped more than 65 patients at Jefferson during the most vulnerable times of their lives.
Cameron Smith, an employee in Jefferson’s Office of Research Administration, has volunteered with NODA since its inception.
NODA is a prime example of how even when a disease is incurable, the care for the individual remains.
— Michael Kaufman, Sidney Kimmel Medical College Student
“There are a lot of people who have had loved ones pass away who weren’t able to be there,” Smith says. “Just to be with them is a wonderful feeling.”
Each NODA volunteer receives extensive training and is encouraged to attend regular seminars that cover end-of-life care and other related topics. Volunteer training includes an overview of the dying process and preparation for acute situational challenges. A deep dive into the values of service integrity, communication and respectful bedside manner are also covered.
Nurses and other care team members recognize when a patient or patient’s family may require NODA’s services and will page the volunteer team. An activation alert is sent out to volunteers who can then sign up for shifts. While in most cases, the care team activates volunteers, there are also times when family members request NODA to be with their loved one when they have to step out or cannot physically get to the hospital.
“I remember a wife who was video chatting with her husband in the hospital and requested NODA’s presence since she couldn’t physically be there,” Kaufman says. “She talked to him over the iPad, telling him goodbye, while we sat there with him. She was so appreciative of our services and even after he had passed, she asked that we stay in the room and on the phone with her until they moved her husband’s body. It was a very emotional experience that reminded us of how simply being present for a patient and their loved one can be enough.
“While we know that NODA volunteers will never replace the presence of a loved one, we can help fill in the gaps when a family member can’t be there,” Kaufman says. “For instance, we had a patient who was a huge Philadelphia sports fan and his family requested someone to be in the room with him during an Eagles game on a Sunday night. It’s the small things that go a long way.”
Debriefing sessions are held within 24 to 48 hours of a patient passing, where volunteers discuss the experience, share emotions, support one another and foster personal and professional reflections on death.
While NODA’s mission is to be there for patients and loved ones, volunteers say they gain as much from the program as those they serve. For students, the program serves as an “inoculation” against the future loss of empathy that sometimes occurs when they enter the clinical setting. It also offers an opportunity to stay connected with the interpersonal part of medicine that drew them into choosing a career in health care to begin with.
“There’s something that’s really unique about being able to share an experience with someone without the pressure of diagnosing them,” says Emily Romano, a student at Sidney Kimmel Medical College. “I’ve definitely learned a lot about listening and being patient and noticing things that I think will make me a more understanding and more compassionate healthcare provider.”
Research has linked greater physician empathy to fewer diagnostic errors, reduced patient symptoms and increased satisfaction, and greater professional fulfillment among doctors. For health professions educators, how best to train students in practices of empathy to counteract the decline of this critical skill is an urgent national question with implications for the wellness of both patients and providers.
Jefferson has been at the forefront of researching and benchmarking the clinical value of teaching empathy and embedding this training in our curriculum and student organizations. In 2001, the Jefferson Scale of Empathy was developed and since has been shared in 85 countries and translated into 56 languages and dialects. It defines empathy in patient care as “a cognitive attribute that involves an ability to understand the patient’s pain, suffering and perspective combined with a capability to communicate this understanding and an intention to help.”
“NODA has allowed me to grow as a healthcare professional in ways I couldn’t have imagined possible,” says Alisa Behari, a nurse and past NODA volunteer. “Death and the dying process is often misunderstood and underserved. However, with NODA, we are able to understand how valuable these final moments of one’s life are.”
“Sometimes the simplest thing you can do for someone is to be with them,” adds David Ney, a student at Sidney Kimmel Medical College. “That’s a lesson I hope to keep with me throughout my career.”