Pastor Bruce Hanson, MDiv, BS, has been a caregiver for his wife for the past 47 years. During the past 10 years, this task has become a full-time calling due to multiple medical issues (diabetes, kidney failure and a subsequent kidney transplant, a debilitating stroke, breast cancer, and seizures) that his wife has encountered. During the years of caring for his wife, he has developed various strategies that have enabled him to navigate the federal, state, and health insurance systems as well as the various medical systems involved in his wife’s care. Given his experiences, Critical Connections asked Pastor Bruce to discuss how critical care practitioners can best engage patients' loved ones. His highly pertinent insights appear below.
"We have your wife in the ICU and we’re doing everything we can for her. We’ll let you know when you can come in and see her." So ends the conversation with the doctor who, at this point, turns and leaves the waiting room, not to be seen again all day. And there you sit, by yourself, all alone in a room that for the most part is silent, with a few other people who are either trying to sleep in a chair or read an old magazine, or who sit there looking just as dazed as you now feel.
Sadly, that is exactly how I felt five out of the seven times my wife was in the intensive care unit (ICU). To not be incorporated into the care of a loved one in the ICU from the outset is very frustrating, to say the least. It also holds the potential to hinder the medical team in acquiring valuable information about the patient that is not readily available otherwise, and it does not instill the confidence of the family, loved ones, and caregivers in those providing critical care.
The priority of ICU staff is indeed to provide critical care, but neglecting to include family, loved ones, and caregivers from the outset can be just as detrimental as not ordering the correct laboratory tests. These representatives of the ICU patient have valuable insight into the patient’s medical and historical background, to say nothing of their ability to help provide calmness and comfort to the patient, as someone the patient trusts and/or loves.
Gone are the days when families and loved ones did not know what was going on (at least to some degree) and believed that the medical team was godlike. Patients, families, loved ones, and caregivers very much want to be included and consulted. They understand both that medicine is a practice and that medical teams cannot possibly have all the answers. Staff discussions, consultations, and research by ICU staff are more than ever appreciated as an integral part of a patient’s care.
Some of the best care my wife received in an ICU was when, as her “knowledgeable caregiver,” I was not only consulted but was even included in rounds for my wife, with full voice, question, and challenge. There were also several staff discussions in which I was included and was able to offer insights to the ICU team that were not available in any other way. Treating the family, loved one, or caregiver with respect as a knowledgeable person representing the patient in the ICU is probably one of the most important elements of the patient's care and certainly the greatest asset that the ICU staff have in caring for the patient.