This post was written by Cara Jo Swetsky of Jefferson Corporate Communications.
When patients are alone in the final moments of their lives, members of Jefferson’s No One Dies Alone (NODA) Program do everything in their power to surround them with the companionship and compassion they deserve.
NODA, the interprofessional volunteer group, is composed 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 a supporting and compassionate presence 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,” said Michael Kaufman, President, NODA and third-year medical student at Sidney Kimmel Medical College at TJU. “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, overall, simply acknowledge that they are not alone in the room when we are present.”
The first-ever NODA program was established in 2001 at Sacred Heart Medical Center in Eugene, Oregon, when a nurse in the hospital had a patient who asked her to stay with him. When she returned from her duties, she found that he had passed alone. From the experience, she fostered the idea that no patient should die alone and ever since her mission has spread globally.
Kathryn McGrath, MD, who started the program at Jefferson in 2016 as part of her fellowship, is currently an attending physician at Jefferson in Family Medicine. She and her co-fellow built relationships and assessed the resources needed to start NODA at Jefferson. They 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,” said Dr. McGrath. “That dedicated group took the reins and have been leading our mission ever since. I think it’s a testament to the type of community we have here at Jefferson.”
Since the start of the program, NODA has recruited more than 130 employee and student volunteers from diverse backgrounds and specialties and have helped more than 60 patients at Jefferson during the most vulnerable times of their lives.
Each 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 shift times and lengths.
“The volunteers of NODA take time out of their busy schedules to sit vigil with our most vulnerable patients,” said John Liantonio, MD, Palliative Care, Family and Community Medicine, and Advisor, NODA. “Their selfless and thoughtful contribution to our patients is just another example of how Jefferson improves lives.”
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.
“There was a very unique story of a wife who was video chatting with her husband in the hospital and requested NODA’s presence since she couldn’t physically be there,” said Michael. “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 ones can be enough.”
In another case, NODA was called when a terminally ill patient was feeling sad and lonely; however, he only spoke Hindi. NODA volunteers were alerted to see if anyone spoke the same language, and in fact, identified a member who did and who was able to sit and speak with the patient for multiple days, keeping him company during the final days of his life.
“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,” said Michael. “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 24-48 hours of a patient passing, where volunteers are able to 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 are serving.
“NODA has allowed me to grow as a healthcare professional in ways I couldn’t have imagined possible,” said Alisa Behari BSN, RN, 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.”
Alisa was the first College of Nursing student to join NODA when it first launched at Jefferson in 2016. She quickly became an advocate for the program, speaking to nursing classes and educating students on the personal and professional benefits that NODA could bring them. Today, she is in the early stages of establishing the program at her current workplace.
“I will forever be grateful for the heartwarming opportunities NODA provided to me as a nursing student, and now, as a bedside nurse, I am able to carry these memories with me throughout my career,” said Alisa. “I can proudly say NODA has helped sculpt me into the nurse I am today.”
“Jefferson’s mission is ‘We Improve Lives’ – and that’s exactly what NODA does,” said Michael. “We improve lives until the very end. It’s a tremendously unique organization and it’s something Jefferson should be very proud of.”
If you are a caregiver and know of a patient who would benefit from NODA’s services, please call 877-656-4615. In addition, all staff and students of the Jefferson community are welcome to volunteer with NODA. If you are interested, please email email@example.com.