For caregivers, effective communication with care teams includes good and potentially bad patient outcomes

Had Phyllis Sargi heeded the advice of the first doctors who counseled her after her son’s collapse, he probably wouldn’t have lived.

Fortunately, she pressed the doctors at Hillcrest Hospital to “try everything.” That would include transferring him to the Cleveland Clinic’s Main Campus. The medical team at Hillcrest warned her and her husband, Tim, that he probably wouldn’t survive the transfer.

But he did.

Spoiler alert: the Sargis’ story has a happy ending. But it was a difficult journey –physically and emotionally – for all involved. After their son’s recovery, Tim and Phyllis Sargi began sharing their experiences through Cleveland Clinic’s Neurological Institute, Voice of the Patient Advisory Council. On Wednesday, they shared their story and recommendations with caregivers at the Cleveland Clinic Patient Experience Summit.

Manrico Sargi’s sudden onset of symptoms (a headache, and then collapse) were the result of a congenital brain defect (AVM). Mannie required three surgeries and a long rehabilitation. Today – nearly a decade after his collapse – his parents say Mannie “has a career, a family; he’s wonderful.”

And Tim and Phyllis Sargi spend the majority of their time helping patients, families, and caregivers improve communication to help create more happy endings to dramatic stories like theirs.

Communication vital to caregiving

Although the initial reception in the ER wasn’t a glowing example of good communication – they said “would you like to call a priest?” – much of the rest of the Sargis’ experience during Mannie’s treatment and recovery was.

Even before Mannie’s first surgery removing part of his skull to relieve pressure on the brain, “the surgeon told us both sides,” Tim Sargi said.

“He explained that even if it was successful, it was only the first operation. There would be more,” he said.

After the first surgery was successful, “he told us they didn’t know if (Mannie’s) speech or sight would be affected.” That basic communication was vital to their peace of mind, Phyllis said. Throughout Mannie’s hospitalization, his medical team “became our friends, our family,” she said.

“They didn’t always agree,” Phyllis said. “But they explained everything.” Tim Sargi said that communication is what he feels is most important in the patient-caregiver relationship.

Phyllis recalled the day Mannie began to awaken from his (induced) coma.

“A nurse came running out…she said ‘your son has opened his eyes and made a sound!’” Shortly thereafter a doctor explained to Tim that Mannie was ready for the swallow test.

“I didn’t know about it. He passed – you know – that is a very big deal.” And while the swallow test is a very big deal to recovery, and to Mannie’s story, Tim describes communication as an equally “big deal” in the quality of care his family received at the Cleveland Clinic.

“The medical team explained everything,” he said. Phyllis agreed that communication is critical, as is working together – both with other medical professionals and with family caregivers.

Practice communication, check ego

She is grateful that the doctors at Hillcrest listened to her family when she asked that Mannie be transferred to the main campus, even though the ER doctors doubted he would live.

The advice she continues to give to medical professionals today: “Don’t give up on life, it’s precious; keep the team concept; and don’t let ego get in the way.”

Tim Sargi echoes his wife’s advice, particularly emphasizing that providing good communication means offering both good and potentially bad outcomes, and sharing timelines and sequences of events that may be obvious to the medical community, but foreign to their patients.

Also, he says, “To keep the communication going, you have to realize you’re often talking over (the patient and caregiver’s) head. It’s important to simplify terms that are readily understandable to caregivers.”

Not surprisingly, the Sargis are passionate about improving teamwork and communication among patients, family caregivers, and clinicians. After Mannie’s recovery, Tim and Phyllis Sargi began sharing their experiences through Cleveland Clinic’s Neurological Institute, Voice of the Patient Advisory Council and have made recommendations for better communication between clinicians and caregivers. Many of their recommendations are included in a Neuro Patient Handbook, which answers questions frequently asked questions by neurological patients and their families.

Photo: Flick user University of Michigan Medical School