Excerpts from Chapter 9, Sherry’s Key in Smoke Screening:Narratives to Navigate Caregiver Burnout
Sherry’s Heavy Burden
Sherry sat alone in the conference room and faced an impossible task: deciding when to disconnect her father from the ventilator. Most people in her situation show signs of shock or lose control of their emotions, both of which are entirely understandable. Sherry, on the other hand, exhibited neither shock nor emotions. She was calm, even stoic. Her auburn hair, clothes, and posture resembled someone of nobility from the Victorian era.
Sherry’s father, Howard, had end-stage lung cancer. All attempts to quell the disease had proven unsuccessful and had rendered Howard’s body of any immune system. Now, Sherry’s father had developed pneumonia and could not breathe adequately enough without a ventilator’s support. Unfortunately, medicine could do nothing more.
Sherry accepted this news, reviewed the medical situation, and sat silently. She could not bring herself to decide to let him go. She struggled with the thought that she would forever bear the guilt of “killing” her father.
“Tell me about your father,” I asked to break her silence. Sherry’s eyes lit up. She burst into story after story of how her father took care of everything: finances, the house, the family.
“He was always serving others,” Sherry explained. “After he was diagnosed, he said he never wanted to be a burden on anyone and did not want to be sustained on a ventilator. He wanted to pass away naturally.”
“It sounds like your father already made this decision for you,” I claimed. Sherry looked up with an epiphany-like look on her face. Sherry did not need to make a decision. Her father had already made it for her. She wouldn’t be “killing” her father. The illness would. But Sherry needed one more thing to rid herself of the emotional trauma that such a decision would have on her: permission.
What Sherry needed, and what many of our patients and families need, is permission. They need permission to grieve, permission to let go, and sometimes permission to communicate. As caregivers, one of the most powerful tools at our disposal is providing our patients the means and opportunity to do things they are hesitant to do. During a crisis, patients and their families carry burdens of guilt, indecision, and confusion. For Sherry, she needed permission to follow what her father wanted her to do. But she could not give it to herself. The burden of guilt would have been too significant for her. Permission had to come from someone else.
Caregivers give patients and families permission by being silent, telling them what they need to hear, and actively listening (see how to actively listen here). Permission should always be given with gentleness and compassion, which conveys respect, builds trust, and decreases burnout in caregivers.