August 17, 1997, started like any other day for Timbs Fulghum, MHA, a community relations manager for the NorthEast market for Atruim Health. She woke up and was getting ready to exercise when her phone rang and her mother told her that her two brothers had been in a car accident. Her older brother Shawn, 30 years old, had been pronounced dead at the scene and her younger brother John, 19 years old, had been taken to a nearby hospital in Norfolk, VA. John was alive but required a breathing machine and other medical supports.
While Timbs and her family grieved the death of Shawn, they also had to make decisions about John’s medical treatment. John was an athlete -- a competitive swimmer, pole vaulter and football player -- and voted most athletic in high school. Like most active healthy young adults, John never talked with his family about what to do in this circumstance and had not completed an advance directive.
Knowing the Implications
Although John was not awake, he looked unharmed other than one minor cut. It was difficult for Timbs and her family to reconcile what the medical team told them about the brain damage John had sustained. The team treating John said that since he was unable to eat, they would need to place a feeding tube. “We were not aware of the implications of this decision,” says Timbs. “We didn’t discuss the pros and cons of a feeding tube, or under what circumstances it would ever be removed.”
When they left the hospital in Virginia to come to North Carolinas for Shawn’s funeral, John was also on a ventilator. After John was stabilized at the hospital in Virginia and his ventilator was removed, he was transferred to a local rehabilitation hospital and then home with his parents. Timbs was 27 years old at this time; her parents were 55 and 59. Now Timbs is 47, her parents are 75 and 79, and John just turned 40.
It has been nearly 21 years since the accident and John has remained stable with a feeding tube but has never regained independent functioning. He has required 24/7 care for the last two decades and his parents have lovingly provided this care in their home. John requires assistance with all aspects of his care including bathing, going to the bathroom and feeding. He spends most of his time in the bed other than when his caregivers use a lift to transfer him from the bed to the bath. And he participates in physical therapy for range of motion work on a padded table in his home several days a week.
A Loving Family
John's good days are days when he does not have a seizure and when he can blink in response to a question they ask or when his lips raise in the motion of a smile. The bad days are when John has multiple seizures. But the family does not view John’s care as a burden in any way.
“I do wonder if John would have made the choices we made on his behalf and if he would want to be alive given his limitations,” says Timbs. “I often think, ‘what would John want?’”
Timbs and her family have coped with this challenge through faith, each other and support from their community. They continue to support and love John and each other. “You can find joy in whatever decisions are made, but I wonder what John would have decided for himself,” says Timbs.
In response to her experience, Timbs has:
- Completed her own advance directive document and regularly communicates her wishes to her family.
- Started age-appropriate conversations with her 10-year-old daughter about what is most important to both of them
- Asked ‘big picture’ questions to providers
In sharing her family’s story, Timbs hopes that:
- Adults will complete an advance directive and talk with their family about wishes in the event they suffer a catastrophic event similar to that of her brother. She says, “It’s truly a gift to your family – in some cases the last and most important gift you will give them.”
- People will review their documents at regular intervals, since one’s wishes will change as circumstances change
- Doctors and other providers will not be afraid to have honest conversations to help families understand the long-term implications of decisions they make. “We didn’t know how much we didn’t know…we didn’t know we were making a decision that could lead into the next two decades,” recalls Timbs.
- Doctors will share their knowledge with families in a clear way
- “This is not morbid… we are all mortal. This information can be so helpful in an unforeseen situation,” says Timbs. “It is a hard topic, but have the conversation so your loved ones will know what you wanted. It will help them cope when making a decision because they will be honoring your wishes not guess what you would want.”
Learn more information about advance directives
Complete your North Carolina advanced directive
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