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To the Editors:
Your editorial "On Notebooks and Trust" (March 2002:96–100) did an incredible job of addressing an extremely important issue in critical care. It is devastating to think that we are losing the trust of our patients and their families. However, reading your editorial reminded me that many of the problems we are facing are the result of systems that we have created, meaning that we have the power to change those systems and positively affect patient and family outcomes. Thank you for asking for suggestions from your readers for other strategies to help patients and their families trust us again. Recently, I was in the unenviable position of being the family member at the bedside and, as a result, have new insight into why those notebooks may be appearing more frequently. Here are a few more suggestions to add to your terrific list.
My first suggestion is that healthcare administrators and clinicians need to critically examine hospital policies and practices that systematically prohibit the patient and family from obtaining information in a timely and useful manner. Examples of these practices include restricting visiting hours, asking family members to leave during rounds, and limiting patient and family access to the medical record. I’ll give one example based on my recent experience. My sister, who had just had surgery at a prestigious teaching hospital, asked her nurse for a list of the medications she was receiving. The nurse seemed overwhelmed by the request, so I innocently suggested that maybe she could just print out the list from the computer. The nurse was clearly taken aback by that suggestion and told us that the information regarding medication administration was "strictly confidential and the property of the hospital." Actually, my sister would have been happy with the names of the medications scribbled on a napkin. She was told that if she wanted that information, she should sign the "special form," and then she would get a copy sent to her after discharge. And she did get that copy, about 6 months later. (Yes, she was able, after much negotiating, to get a handwritten list of her medications later that day).
My second suggestion is to be proactive and provide the patients and families with a means for organizing information and communicating their needs when the patient is first admitted to the unit. One reason patients and families use notebooks is because notebooks (electronic organizers, etc) serve as a tool for gathering and organizing information in a world where it seems there are no other options. There’s no way you can keep all that information in your head, so you need someplace to write it down. I’d recommend giving patients and family members a 3-ring binder with dividers to use for organizing information, questions, handouts, etc. Included in the binder could be a variety of standardized information to give the patient/family answers to frequently asked questions and a who’s who of the unit. The first few pages could be used for listing the names of the caregivers assigned to the patient each day. There could also be a section for inserting information regarding equipment, which could be individualized based on the needs of each patient/family. The binder should also have a place where patients/families could write their questions and then have those questions reviewed each day by the team on rounds. I’d make sure and put a beautiful cover on the binder that says something like, "Information is critical. Let us know what you need."
Lastly, I would recommend that we start to view the notebooks and "grilling" in a different way. I would venture to suggest, that for many families, the notebooks they clutch in their sweaty hands are often more like prayer books that help them search for answers to the often unanswerable questions they face. Their repeated inquiries may not really be directed at learning how the ventilator or the medication work but rather represent a plea for reassurance and an answer to the question, "Will my loved one be okay?"
I know that these are difficult times for healthcare professionals, but these are catastrophic times for the patients and families we serve. I also know what it means to have a "bad day" working in a critical care unit. But believe me, it pales in comparison to a "bad day" on the other side of the double doors.
Your editorial gives me hope because it recognizes that we have work to do and that we share in the responsibility for changing the system that has gotten us to where we are today. It also reminds me that we, as individuals, can and do make a difference in the lives of every patient and family for whom we care. No, these are not good times. But these times are a call to action to do what needs to be done. I am confident that we will find the solutions and do the right thing.
Personally, I’m a big fan of notebooks and think they can be very valuable. Perhaps notebooks will someday be part of our solution for sharing information, improving communication, and fostering trust. Wouldn’t that be ironic?
Longmeadow, Mass
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