Phil and Margaret Hinesley loved life passionately and lived it to the fullest. Happily married for 53 years, the high school sweethearts raised four active daughters and pursued their respective professional careers in their community of Pinehurst, North Carolina; Phil in engineering, Margaret as a teacher.
Church and community leaders, the Hinesleys were active volunteers and with a wide range of interests—beekeeping, morel mushroom hunting, travel, golf, entertaining, engaging with their many energetic grandchildren, among others. In retirement, they started a real estate firm together.
Life changed for the Hinesleys in 2019. Phil died from glioblastoma and, at about the same time, Margaret was diagnosed with vascular dementia.
The paths each took over the course of their illnesses could not have been more divergent, the family says. There was one major difference, a goals-of-care plan, said daughter Carla Sevilla. Margaret had one. Phil did not.
Margaret Hinesley was able to live life on her own terms until the end, accompanying her whole family on safari in Kenya just six months before her death. When Margaret reached the point last Thanksgiving where she began to need more care than the assisted living facility she was in could provide, the family began to think about next steps and connected with Chris Jones, MD, director of Outpatient Palliative Care at Duke Health.
Jones quickly realized that Margaret had progressed to the final stages of dementia and got the family together on a Zoom call to discuss the numerous medical appointments that were scheduled for Margaret; eye appointments, blood pressure appointments— nearly 50 of them.
“He asked if we were a heartbeat family, if we were going to keep our mom alive no matter what or if we were a quality-of-life family,” said Sevilla. “That question solidified the way we wanted mom's end-of-life-care to go. We wanted her to have quality of life, but we don't need to fix every little thing when she may only have 12 months. That was the direction of the care that we chose as a family to take, just to keep her happy and comfortable.”
Margaret moved in with the Sevilla family and had the care support she needed while remaining active. Margaret had a ball the evening of February 23 in the stands at Cameron, cheering her heart out for the Blue Devils. The next morning, she could not get out of bed.
“We knew something had happened,” Sevilla said. “She declined very quickly and passed away four weeks later. Mom regretted never making it to Hawaii, but little else. Dad had become a medical tourist in search of clinical trials and a cure. It was a really stressful time for him and for our family. What I loved about the journey with Mom at Duke is she had an amazing quality of life up until the very end.”