Nearly 30 years have passed since Linda Martin, 72, underwent surgery at the Brigham for a partial bladder removal and urostomy, a procedure that creates an opening in the belly through which urine can exit the body. Performed to bypass a diseased or damaged urinary tract, a urostomy siphons urine to a pouch on the body that patients need to regularly empty and change.
Martin, who had both procedures to treat bladder cancer, knew the urostomy would offer her the best chance at continued health. Still, as she prepared for discharge from the hospital, she worried about how her life would change. Like many patients with an ostomy – a category of procedures that also includes ileostomies and colostomies, which involve the intestinal tract – Martin would have the pouch for the rest of her life.
“No matter how excited I was to go home, see my son and husband and sit on my porch, I was afraid. I wondered, can I really take care of this at home?” she recalled. “The nurses were so helpful and encouraging in terms of my medical needs and progress, but at that point I would have loved to meet someone with an ostomy. I had so many questions, even simple ones like, ‘What kind of bathing suit can I wear?’”
Martin quickly learned she had nothing to fear, finding that her life and career would remain just as active and fulfilling as they were prior to the procedure. Inspired to help patients facing the same anxieties she once did, five years ago Martin connected with Wound and Ostomy Care nurses Diane Bryant, MSN, RN, CWOCN, and Mary Willis, MSN, RN, CWOCN. They worked together to establish the Brigham’s Ostomy Peer Visitor Program to support patients with new ostomies transitioning from hospital to home.
Central to the program are volunteers with ostomies who visit patients in their hospital rooms. Initially launched as a three-month pilot with Martin as the sole volunteer visitor, the program has since expanded to five volunteers who represent a diversity of age, gender, personal background and ostomy type.
Volunteers come to the Brigham on Mondays, Tuesdays and Fridays to speak with interested patients on Tower 8, 12 and 15 and CWN 8; they also speak with patients by phone during off-hours. Bryant and Willis work closely with volunteers to provide training and education, introduce them to care teams and collaborate with nurses on the units to identify interested patients.
“We’re a team – the nurses, physicians, social workers and volunteers. We all work together to ensure the patient has the best experience,” Bryant said.
Empathy and Compassion
Patients fearful about being in public or feeling normal again benefit greatly from hearing volunteers share their personal stories, explained Bryant and Willis.
“Ostomies can be life-changing experiences for patients, and we were concerned about quality of life for our patients,” Bryant said. “As nurses, we can provide that physical and emotional care, but often in the back of the patient’s mind is the thought, ‘Well, you don’t have one of these. How can you know what I’m feeling?’ This program supplements the care we provide by connecting patients with someone who can answer questions they may not feel comfortable asking a nurse.”
Willis noted that because having an ostomy often causes considerable anxiety around body image, it is especially meaningful for patients to hear volunteers talk about their experiences with an ostomy while enjoying some of life’s biggest milestones, such as marriage or the birth of a child, and finding accommodations for more routine activities like exercise and travel.
While speaking with volunteers can reduce patients’ anxiety, simply seeing them is equally powerful, Bryant and Willis added.
“When a volunteer goes into the patient’s room, you can see the patients giving them a once-over and looking for the outline of a pouch under their clothes,” Willis said. “It’s really helpful for them to see they’re dressed like everybody else, and you cannot tell there’s a pouch, even under fitted clothing.”
Martin said she feels honored to help others by sharing her story and being a compassionate listener.
“I’m comfortable with having an ostomy now, but I haven’t forgotten what it was first like,” she said. “Patients hold my hand and say, ‘You give me hope.’ I’m grateful to help their heart feel a little lighter.”