At lunch time in a prominent Massachusetts hospital, about 100 staff members from different departments gathered in a large conference room for Schwartz Center Rounds, a forum that helps caregivers process the difficult emotional and social issues they face in caring for patients and families. The mood was relaxed and the facilitator light-hearted as she opened the session, reminding the group that “patients are our best teachers—they tell us what they need, and we try to respond.”
The panel, consisting of the patient’s doctor, his nurse and a doctor who had written an article about post-traumatic stress disorder (PTSD) in patients after their release from the intensive care unit (ICU) began to discuss the case. The doctor who had written the article first talked about how some patients have terrifying flashbacks of events that never occurred after leaving the ICU. She noted that some caregivers and families have started keeping journals to record patients’ actual experiences in the ICU to help prevent PTSD.
This particular patient was a young man in his mid-twenties who had received a lung transplant. He remained awake and responsive in the ICU despite receiving strong doses of medications, leaving him at high risk for “knowing what was going on but misinterpreting what was going on,” the patient’s doctor said. Since these conditions can spur the emotionally debilitating flashbacks typical of PTSD, the doctor recommended recording the patient’s experiences in a paper journal that was kept in his room.
The patient’s nurse said she was concerned about the patient and his family and could relate to their situation because her own son had been an ICU patient after an accident. She said the journal she kept for her son was “cathartic for our family and for him.”
His nurse said that it’s important to avoid analytical and medical language in journal writing since the goal is to give patients an emotional understanding and explanation of what they experience in the ICU. Including the names of caregivers and others present in the ICU, for instance, adds a human connection to the patient’s care.
Staff members caring for this patient were encouraged to write his journal. One student nurse wrote that she was helping him “rest his organs and helping him to get strong.” The patient’s nurse suggested keeping the tone somewhat light. On St. Patrick’s Day, for example, she wrote: “Today, we tried to sneak out to a local pub, but the doctor caught us and said no.”
In opening the discussion, the patient’s doctor mentioned it was important for caregivers to understand that a patient’s emotional recovery can extend beyond his or her physical recovery from the ICU. An occupational therapist in the audience said she had a patient whose family used photographs to visually show their family member’s progress, which helped him understand what had happened to him. The nurse in this case said her biggest regret was that she hadn’t taken photographs of own her son to document his progress in the ICU; he had asked for them after his recovery.
This patient, while out of the ICU, was still in the hospital and not yet ready to read his journal. For caregivers, this can be challenging—the nurse in this case said she hopes the patient will eventually read his journal because it will show him how much care went into his treatment, but she knows she can’t push him to read it before he’s ready.
One doctor mentioned that journals can prevent caregivers from feeling they gave a family “false assurance” that patients wouldn’t remember their treatment while in the ICU. The patient’s nurse called the process “humanizing,” saying journals can prevent caregivers from becoming emotionally detached while trying to protect their own emotional well-being in the face of such debilitating illness.
One attendee asked about the potential emotional consequences for the caregiver if the patient does not survive during the journaling process. The patient’s nurse said it is difficult to separate her feelings for her patient from her professional responsibilities—particularly because of her own experience with her son—but that she was able to keep them separate while also retaining her compassion.
At the end of the session, a psychiatrist in the room said it’s misleading to think there is an “end point” to a patient’s emotional recovery after leaving the ICU. He said caregivers should avoid the tendency to “debrief” patients immediately after they are transferred from the ICU; rather, they should let them ask for information when they are ready. In this case, the patient may or may not decide to read the journal, but it will always be available to him to aid in his emotional recovery—as well as help helping caregivers better connect with their patients and process their own emotions and feelings.
Please note that some case details have been changed to protect patient confidentiality. Photo is representative only and does not depict the actual patient or caregiver. Photo by VisualPhotos.