Decisions, Choices, and Advocates for Our Care
Even the best of care needs to be overseen to assure our wishes are honored
My years as a registered nurse has proven to me the great importance that a personal advocate for anyone receiving care becomes. Our healthcare professionals, like myself, are well-intentioned but also open to their own interpretation of exactly what our words mean. Combine this with many situations where these documents and plans are unavailable, a situation like the one that my own mother lived through happens. Only too often.
My mother suffered a stroke, several months following a lengthy hospitalization and rehab stay. During this previous time, we met with my parents as a family and outlined what the terminology for rehabilitative care meant, and all the outcomes that this choice held. We also talked about her “Code Status” at that time; she was not ready to become a DNR (Do Not Resuscitate) at that time, but did cheer when she learned that she need not continue in the rehab plan. She clearly, and joyously, chose palliative care. Comfort measures only. Yet when she suffered a stroke and was unable to speak, and quickly displayed a heart issue that needed aggressive and immediate treatment, there was no written guidance to support her choices made only a few months earlier.
In Sally: A Memoir, I outline my walk with my mother and my entire family during this time. After three years, I can still remember my outrage when we were questioned continuously about our stand that she remain comfort measures only. I realize that the hospital social worker and many physicians were doing what they must do, but as a family member it was an exhausting and upsetting time. Since my mother was unable to speak for herself, we were viewed with “raised eyebrows” every time we chose to forgo the many expected aggressive steps to restore my mother’s heart. It was heart wrenching for us, but finally a hospitalist from a culture other than our own, heard me; he listened and acted. She was then transferred to hospice care.
It is my hope that my book will help others to understand the importance of clarifying their wishes and taking the steps to protect these. In our culture, there is little regard for those that don’t seek life at all costs, that are content with the life they have lead and are peaceful about allowing the natural outcome of their diagnosis. Having clear discussions while we are healthy and well are vital. Communicating these wishes to family, putting them into writing and sharing them with all helps to assure these also. But a strong advocate also needs to be present to help with all of the complex decisions that will come up.