Information Sharing: Improving Communication from a Patient Perspective
Over the past few months, I’ve written both about my experience as a Patient Family Advisor (Breast cancer and the “silver lining” – a Patient Family Advisor’s perspective) and the first of four core concepts of Patient and Family Centered Care (PFCC) (Dignity and Respect – from a patient’s perspective).
Today I’d like to reflect on the second PFCC core concept of Information Sharing. The formal definition is: “Health care practitioners communicate and share complete and unbiased information with patients and families in ways that are affirming and useful. Patients and families receive timely, complete and accurate information in order to effectively participate in care and decision-making.”
In the end, what we all want most is communication. Did you take the day off and are waiting for a service provider to come to your home to make a repair? It can be maddening if we wait all day without knowing when the service provider is going to arrive. All we need to offset our impatience is to know the estimated time of arrival.
Patients and families can handle bad news if it is delivered properly. And the person delivering the news can also be gratified in knowing that it was the right thing to do. A case in point (perhaps extreme, but nonetheless an example) would be the Ted Talk titled, “Am I Dying” The Honest Answer, delivered by Matthew O‘Reilly. Please take five minutes to listen to this critical care EMT tell his inspiring story. You will not soon forget it.
I remember clearly asking a member of my cancer team what my prognosis was and if I needed to consider retiring. The answer was, “You have an excellent prognosis and you do not need to retire if you choose to continue working.” Was it difficult to ask these questions? You bet it was, but the answers sustain me to this day. I retired on my own terms after realizing that there is life after cancer.
As in other pieces that I’ve written, I would also like to point out that patients need to give complete and accurate information to their healthcare providers. If we are completely honest with ourselves, we all keep secrets. Sometimes we keep secrets at the request of others. Sometimes we keep secrets so that we do not have to “face the music.” Sometimes we keep secrets because it is a form of control for us. Whatever the reason, we all keep secrets. Are we abused by loved ones? Do we abuse ourselves? Information sharing is a two-way street and we cannot expect our health care team to give honest answers if we do not give them honest data about ourselves. Fibbing about our weight on our driver’s license is considerably different from withholding the truth about diet, exercise, smoking, etc.
Thanks for all you do!
Pat Clesh, Patient Family Advisor