The journey through end of life: Supporting patients as they pass

At Brigham and Women’s Faulkner Hospital, the Spiritual Care Services team provides patients, their loved ones and hospital staff with emotional, spiritual and religious support. This support is particularly impactful during the journey through end of life. In addition to offering end of life rituals and memorial services, the Spiritual Care Services team has recently begun offering two new services designed to provide comfort and a sense of peace at end of life. In this two-part series, we will explore how these services support both patients and their families.

In part one, we turn our focus to supporting patients as they pass—particularly those patients who are without friends and family at their bedside—and the role Vigil Volunteers play in their care.

“When a patient transitions to comfort measures only—which means the care team stops aggressive medical intervention and focuses on keeping the patient comfortable—we evaluate the patient’s situation to determine if they have the support they need from loved ones as they move through the dying process,” explains Spiritual Care Coordinator Tara Deonauth, MDiv. “Occasionally, we have a patient who really doesn’t have anyone outside of their hospital care team. That’s where our volunteers come in. They take turns sitting vigil with the patient one hour at a time.”

The Vigil Volunteer program was launched in July of 2022 by the Spiritual Care Services team in collaboration with the Palliative Care Services team. The first vigil took place recently over the course of three days with volunteers providing 18 hours of support to the patient and her caregivers. In total 24 staff members at BWFH and across the Mass General Brigham system have volunteered to sit with patients during their journey through end of life. Among the volunteers are both clinical and non-clinical staff members, all of whom feel deeply that no one should die alone and all of whom have their own unique motivation for volunteering.

Gabriella Burke, MS, RDN, LDN, an inpatient dietitian, was one of the first to volunteer. “When I heard about the program, I felt compelled to participate. I have always believed that no one should die alone. In my family tradition, we cherish this time with our loved ones and want them to know how much they are cared for and adored,” she says. “When I sit with someone as they pass, I don’t view it as sitting with a patient. I view it as sitting with a loved one of my own. I see it as my responsibility to treat them with the same comfort, love and care that I would for a family member. It’s a blessing for me. I feel grateful and honored to be able to provide that special level of care.”

Susan Langill, RD, LDN, Area General Manager for Food and Nutrition for the Brigham family, recounts an experience early in her career when she worked in a clinical role that has stuck with her. “Thirty years ago, when I was a new inpatient dietitian checking in on one of my patients, I felt the need to stay a while longer and hold his hand. He passed away shortly after,” she says. “Knowing that perhaps I comforted him, and he was not alone for that moment in time, had a profound impact on me. When the opportunity to participate in the Vigil Volunteer program presented, I just knew it was a rewarding way to give of myself.”

Libby Seale, Applications Specialist, is one of the non-clinical staff members who volunteers. “I volunteer for two reasons,” she says “It is one way to help our nurses. They have so many demands during their shift, providing care to multiple patients and all the associated administrative work. I can sit with a patient for an hour or two and hopefully ease some of the burden. And I volunteer in memory of my in-laws, who both died of cancer 20 years ago.”

Mary Duggan, Workforce Development Program Manager, is another non-clinical staff member who volunteers. “My mother passed away in hospice care in a community hospital similar to ours. My siblings and I were fortunate enough to be able to arrange our schedules so that she was never alone. My extended family spent a great deal of time with her as well. A while back, a hospital chaplain mentioned that this was unusual and that sometimes patients spend days without a visitor,” she says. “When the opportunity to be part of the Vigil Volunteer program became available, I was reminded of this conversation. If the short time that I spend reading and talking to a patient in any way gives them peace, it is my privilege to do it.”

Ann Slowe is the unit secretary on the hospital’s inpatient psychiatry unit. Like Duggan, she feels called to provide the same care and comfort she has provided to her own family to those who need it. “I watched both of my parents pass surrounded by love, gratitude and comfort. When I heard about the Vigil Volunteer program, I knew I wanted to help bring that same comfort to others to try to make their passing as peaceful as possible,” she says.

Carrie Kaufmann, who works in the Gift Shop at BWFH, was part of the team that got the program up and running and volunteers herself. “I lost my dear father to a stroke at the height of the COVID-19 pandemic. I was not allowed in the hospital, so he was alone. I cannot imagine his angst. Thanks to his amazing nurses, I was able to FaceTime him so he could see me and hear my voice,” she says. “My first experience as a Vigil Volunteer brought me many emotions. One emotion that I suppose surprised me the most is that it brought me joy. I felt so much love and warmth as I sat with the patient. It was a privilege and an honor to share her last moments with her. I thought back to my dad, and if someone could have sat with him it would have brought me so much comfort. So, the fact we are bringing comfort to the families of these loved ones fills my heart with joy.”

Following each shift with the first Vigil Volunteer patient, program coordinators asked volunteers to share their thoughts on the experience. Burke wrote, “She was deeply somnolent, but appeared comfortable. I played oldies R&B on my phone. I talked with her and praised her for being an amazing mother/grandmother/caregiver to everyone around her. I prayed with her and focused on comfort and peace. I met a staff member who grew up with her daughters and has known the patient her whole life. She spoke volumes of her and the love she gave to everyone through the years. I feel so blessed to have met this patient and learn from the life lessons she instilled in her family.”

Langill recounted how the experience impacted her personally, writing, “She seemed comfortable. I held her hand and gently caressed/massaged her head. I know we discussed self-care after these visits but oddly enough, I felt that this visit was self-care. I was grateful to be there for that hour with her.”

Seale was there when a member of the in-hospital hospice team visited the patient. “She was resting peacefully the whole time I was there,” she recalls. “I introduced myself and then we sat and listened to the birds and the music. A chaplain from Care Dimensions came in for a bit. She read a part of Psalm 31 and said a prayer. It was truly a privilege to share the time with her. I wished her peace before I left.”

The Vigil Volunteer program has been a success thanks to its leadership team, which includes Deonauth, Palliative Care Services Director John Halporn, MD, Gift Shop Associate Carrie Kaufmann, Psychiatry Resident Bryana Bayley, MD, and Case Manager Margaret Kelly, BSN, RN, CCM.

The Vigil Volunteer program is seeking more Vigil Volunteers to support our patients who pass in the hospital without loved ones at the bedside by providing compassionate companionship during the dying process. This opportunity is available to any employee at BWFH as well as those within the larger Mass General Brigham network. Volunteers help to provide a dignified, respectful death and can expect to sit at the bedside of a patient, offering a quiet presence, for one hour, once or twice a month, outside of work hours. If you are interested in volunteering or learning more, please contact Spiritual Care Coordinator Tara Deonauth.

Published 9.1.22