Being present: One parent’s experience
Physicians who are uncomfortable with allowing family members to be present during difficult and invasive emergency procedures might change their minds if they understood the reasons that parents want and need to be there and the possible benefits they could provide to both the child patients and the caregivers, says Plano, TX, resident Susie Hott.
In 1994, Hott’s 14-year-old son, Donnie, was critically injured in a fall from a tree. Flown by helicopter from a local hospital to Parkland Health and Hospital System in Dallas, Donnie underwent surgery to repair his lacerated liver and was admitted to the intensive care unit. The next morning, however, he went into cardiac arrest.
Although it ran contrary to hospital practice at the time, Hott and her husband were allowed to enter the room where the resuscitation was under way and talk to and touch their unconscious son as the medical team attempted to save him.
Even though their efforts were unsuccessful, the providers’ decision to allow her and her husband to be present helped them cope with the tragedy of his death and, she believes, allowed them to comfort their son in the last moments of his life.
"It gave us a choice in the midst of almost total loss of control," says Hott. "My husband, during all of this, apologized to Donnie for an argument they had. I think Donnie needed to hear those words, and my husband needed to say them. If he hadn’t been able to, I think it would have haunted him."
Her imagination of what was happening during the resuscitation would have been much worse than seeing the actual procedure had she not been allowed into the room, Hott adds. "There would have been no explanations that could have convinced me of the grim reality that needed to be accepted by both of us or of the decisions we had to make, such as about the doctor stopping, if we had not been in there," she says. "[We went in] and went over by the wall near the head of the bed, almost cheering him on, then we went back to the wall, and I remember the fifth-year resident in there saying, We are going to get the defibrillator and we are going to defibrillate him, but if this doesn’t work, I recommend that you let him go.’"
Seeing how hard the medical team worked to save her son helped her understand that nothing more could be done and that he truly had died, she says.
"If we had not been in there, I would have forever wondered if he could have come back if he had heard us," Hott says. "I would have always wondered if I could have touched him and done something that would have made him stay."
Years after her son’s death, Hott read a newspaper article about the nurse at Parkland who accompanied her into her son’s room and how she had gone against accepted practice at the hospital to allow her to do so.
Hearing that many emergency departments and hospital intensive-care units do not permit this has prompted Hott to become an advocate for family presence, often speaking to groups of doctors and nurses about the benefits of allowing parents into the treatment room.
"When we went in there, I had no idea that we were doing anything out of the ordinary. I didn’t think it was a big deal. I just thought she had to say to them, OK, we’re coming in,’" she says. "A hundred years ago, death was seen as a part of life. Families experience death as a part of life. Why try to protect me from it? It is still a reality, I might as well experience it, especially if it is my choice."
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