Steffanie and Barry Garner were returning from a weekend getaway to Florida when Barry’s left leg didn’t feel quite right. Barry, an active 57-year-old businessman, initially dismissed it as a pinched nerve from being cramped in a small rental car. But within a few days, Barry was so weak he could barely manage steps and he fell twice.
The last thing the Atlanta couple thought they’d being doing the Friday night before Christmas was going to the emergency room. By midnight, they were in disbelief with the results of the MRI.
“The doctor very calmly said to Barry, ‘You are not going home tonight. You have a brain tumor and we are admitting you,’” recalls Steffanie. “We said, ‘No, no, that must be someone else’s X-ray. We’re here because something is wrong with his leg.’”
But the reality sunk in as Barry’s condition worsened. The tumor was lodged in the right side of Barry’s brain and made it impossible for him to move his left leg and left arm. The neurosurgeon scheduled surgery for Sunday—Christmas Eve. It was the first of several holidays that would mark devastating milestones in the progression of his disease.
Right before the surgery, Barry’s daughter announced that she was pregnant—hoping to give her dad something to look forward to.
About 20 family members and friends gathered in the waiting room during the surgery. When it was over, only Barry’s immediate family was allowed to hear the outcome. That’s when Steffanie knew it was bad news. And it was: The most time they could hope for was about a year.
Steffanie was stunned. Her husband of nearly 27 years, who had always been healthy, liked to landscape, was not overweight, was now facing such a dire diagnosis. Still, she didn’t slow down long enough to absorb the news. The days quickly filled with treatment and care.
The holidays came and went. A scan on Valentine’s Day showed the aggressive tumor had returned. A setback on Memorial Day landed him in the hospital.
On July 4, in-home hospice started.
Through it all, Steffanie says she relied on her case manager at Aetna—her one, consistent point of contact she called “my buddy Richard.” He coordinated coverage with the rehab facility, palliative care office, and hospice providers—helping her ask the right questions and translate the medical jargon.
As the months went on, Steffanie was getting just a few hours of sleep as she continued to work as a marketing manager at a private school and be Barry’s caregiver. Richard lent his support and coordinated care.
When it became too difficult for Steffanie, the case manager arranged for palliative caregivers to bathe Barry three times a week. Aetna also provided someone to replace the dressing on the open wounds he developed on his legs in reaction to the chemotherapy.
“I am not a nurse by nature and dressing wounds on someone you love—that was really hard to do,” says Steffanie. “They had the training and would do it the right way. Providing all that relieved me a lot of the care part and gave me the ability just to love him and let someone else do all the nitty gritty.”
Aetna’s Compassionate Care program is built to offer this kind of comfort at what is an overwhelming time for families. Aetna case managers help families arrange for services and decide on treatment. If the choice is to remain at home, comfort care can be set up—even as members continue with curative treatment. Aetna was one of the first companies to offer its members the opportunity to pursue both options simultaneously.
“Our main focus is person-centered care—to know the members’ wishes, beliefs and values and what they want to happen,” says Sherrie McNutt, a registered nurse and head of case management operations with Aetna. “When faced with possible end-of-life diagnoses, we want them to drive the interventions. We want to be a conduit to let members have the experience they determine and not somebody else.”
Case managers provide information to help guide the family through each difficult decision. For example, Aetna recently partnered with Advanced Care Planning Decisions to pilot a program that explains services with short videos. The library of videos includes some that take viewers into an intensive care unit and others that address dealing with specific conditions, such as dementia. Case managers can talk about the range of care from life-prolonging to limited medical care to comfort care.
The most difficult decision they face is end-of-life. When Barry’s situation worsened, Richard suggested to Steffanie that the family have “that conversation.” In consultation with their minister, they decided to forego any life-sustaining measures. He would live his final days at home. Steffanie says Richard was a “calming presence” who listened to her throughout the agonizing ordeal.
In July, Barry’s twin granddaughters, Aine and Hadley, were born six weeks early.
“He was able to know they were here and healthy. He talked to them on FaceTime on the iPad,” says Steffanie. “It was really sweet. Once he got that, he was OK.”
Barry died less than a month later, in the three-bedroom ranch home where he and Steffanie had raised their four children.