Recognizing the unique mental health needs of patients with implantable cardioverter defibrillators, physician assistants Lauren Rousseau (left) and Tiffany Andrade German (right) launched a support group for patients in collaboration with cardiovascular psychiatrist Margo Funk (center).

Cardiac Electrophysiology physician assistant Lauren Rousseau, MPAS, PA-C, was accompanying a young patient to the Electrophysiology Lab when he posed a question she had never heard before: “Do you have any support groups for patients like me?”

Patients “like him” meant those with an implantable cardioverter defibrillator (ICD), a battery-powered device that is implanted in the chest and used to correct life-threatening heart rhythm disorders.

If someone with an ICD experiences a dangerously fast heartbeat, known as an arrhythmia, the device can deliver an electrical shock to restore the heart to a safe rhythm. While an ICD is a lifesaving device, for some patients it can also be life-altering, including the impact on their mental health. Intense fear of being “shocked” while in a vulnerable state, such as driving or showering, can lead to anxiety, depression and post-traumatic stress disorder.

When Rousseau considered the question from her young patient about support resources, nothing came to mind. “I’ll do some research and get back to you,” she told him.

That brief interaction led Rousseau and fellow Cardiac Electrophysiology physician assistant Tiffany Andrade German, PA-C, to establish a support group at the Brigham for patients with ICDs. To their knowledge, it is the only hospital-based group like it for ICD patients in New England. As part of this effort, they collaborated with Margo Funk, MD, MA, director of Cardiovascular Psychiatry, to offer a mental health resource during and after the support group session.

“When patients go home, they’re sort of on their own. We knew what the literature said, but personally I wasn’t appreciating the gravity of that immense change,” Andrade German said. “From carrying their baby to going to work, they’re trying to figure out all the activities they need to modify for safety. It’s a lot of transition, and it happens so quickly.”

Launched last November, the ICD support group has met only twice so far but is already filling a clear need. The first session attracted about 75 attendees, and the second, held in March, drew about 120 people.

Overcoming Isolation

The group is open to anyone with an ICD or considering one, including patients at other hospitals or health care systems. The two-hour sessions, which offer in-person and virtual attendance options, feature guest speakers and patient-led discussion groups moderated by an electrophysiology clinician or a behavioral health specialist. The team hopes to continue evolving the program based on patient feedback and to incorporate new features, such as affinity groups for attendees with similar demographics or life experiences.

“We have over 10,000 arrhythmia patients at BWH, which includes about 2,500 patients with defibrillators, and we realized we were doing them a disservice by not offering them this kind of resource,” Rousseau said. “Giving patients a platform where they can share their story and relate with each other has been really powerful.”

That was the case for one attendee, Kate, a mother of two in her 40s, who received an ICD at the Brigham earlier this year after learning she and her children carry a genetic mutation that can cause arrhythmogenic cardiomyopathy, an inherited heart muscle disorder that can result in potentially life-threatening heart rhythm disorders or heart failure.

Three weeks after her ICD procedure at the Brigham, Kate virtually attended the support group’s spring session. The featured speaker happened to be a mother of a child with an ICD.

“That was interesting for me because that may or may not be in my children’s future, depending on what their clinical course is,” Kate said. “It was also helpful to see a few other women who are around my age. When I was going to my appointments, I had noticed most of the patients in the waiting rooms were 20 to 40 years older than I am, so it was nice to see people I could relate to at my stage of life.”

Funk, who provides individual psychiatric care for patients with cardiovascular health concerns, explained that hearing from peers can be especially healing for people with an ICD.

“These patients experience a lot of isolation, and knowing you’re not alone can be huge,” she said. “Many patients who have received an ICD feel their life has completely changed, and they can struggle with redefining their identity. I’ve had several patients tell me they feel like they can really help people through this support group — that it gives them new meaning and begins to answer the question ‘why did this happen to me?’”

Poignant Reflections

While Kate has not experienced a cardiac arrest or an ICD shock, she sought out the support group and individual sessions with Funk to help her process everything she and her family have gone through.

“Being wheeled into the operating room was a lot to take in. Everyone was so professional, compassionate and doing what they needed to do, but I felt like a racecar pulling into a pitstop because everyone descended on me at once,” she said. “The rational part of my brain recognized I’m at one of the best hospitals in the world, under the care of a very highly skilled team of professionals who do this all the time, but my more primitive survival instinct was sounding alarm bells. I remember seeing the tray of instruments and realizing those are the tools they’re going to use to cut me open. I felt really vulnerable.”

Perspectives like this remind Andrade German, Funk and Rousseau why their work on this project matters.

“There is so much we can learn from patients that we don’t capture at the one-month post-op visit,” Andrade German said. “This support group provides an important outlet not only for patients but also for us to better understand their experience.”

As a patient, Kate said it is comforting to know her Brigham team is thinking about how to address the unique mental health concerns of cardiovascular patients.

“I appreciate that providers are thinking about caring for the whole patient beyond the surgical and medical pieces,” Kate said. “Getting an ICD is not like having your appendix removed — you do it and now it’s over. I had this surgery, and now every day I see the outline of this device in my body and know there’s a possibility I could get a shock. I am grateful these providers recognize that the care isn’t over when they discharge you from surgery.”

The BWH ICD Support Group’s next meeting is scheduled for Thursday, Sept. 28, 5:30–7:30 p.m., in the Zinner Breakout Room, 70 Francis Street, Boston, MA 02115. For more information, email bwhicdsupportgroup@mgb.org.