These Things I Believe

I am a health care professional who has worked in the field for two decades. I have been part of small miracles and heartbreaking events, which kept me up at night. Although I do not provide direct patient care, my advanced education and expertise allows me to advise members of the health care team when difficult questions arise about the goals of treatment, questions about competency and interpreting patient preferences. I believe my interest in the field was shaped by my family’s experience dealing with the challenges that come with terminal illness and advancing age. I am humbled to have been part of their journey as they faced death with dignity and grace.

Living in a small community presents significant challenges that may never occur in a large urban setting. The team you work with knows your family or the names of your children because in their spare time they are the piano teacher or soccer coach for your children, friends that knew you growing up. This close knit atmosphere can be a blessing when things go well and unbearable when mistakes are made or professionals disagree, because you still interact with one another outside the context of your professional role and this is when moral distress begins.

I began working with A. J. ten years ago to facilitate the completion of a health care directive. At the time A. J was beginning to show the signs of a neuro–muscular disease experienced by other members of the family. In early 2000 most directives were fairly straightforward with the option to choose artificial nutrition and hydration or not. A. J. very specifically checked “none.” Years went by living independently for A. J. but as most illnesses progress so did A. J’s, and admission to a health care institution became necessary. In many situations medically assisted nutrition and hydration would be indicated, but in this case the wishes of the patient were known in the form of a health care directive. The decision makers inability to honor the directive was the purpose for my involvement almost a decade after my initial work with A. J.

No matter where you stand in the debate regarding medically assisted nutrition and hydration being burdensome or ordinary care, most people believe in the importance of a health care directive given the histories of Nancy Cruzan, Karen Quinlan and Terri Schiavo. My objective was to compile the legal information that would elucidate the patient preferences and help staff and the decision maker understand it was time to honor the directive given the advanced stage of disease. Numerous attempts were made with the surrogate and health care professionals to help them understand state statutes on health care directives supporting a patient’s right to chose. It became clear that some of the team seemed disinterested in my concerns or my responsibility as a professional, and I began to believe the difficulty was a failure on my part to communicate clearly.

During that first year conversations and meetings were scheduled with the patients decision makers and they felt unable to make a decision and requested the entire family provide input. Although they understood A. J’s wishes, they felt everyone should be in agreement. In my experience when leaving decisions of this magnitude to a large extended family, communications deteriorate and little can be accomplished. Some members in the family held fundamental religious beliefs and thought a miracle could change the prognosis. While I believe as health care professionals we must respect individual religious beliefs and values, we are also morally obligated to advocate on behalf of our patients a fundamental principle I hold dear.

The health care team was no more eager to address the issue than the family. I had produced specific state statutes regarding the health care directive of a previously competent person and even in light of this information, some individuals continued to believe the surrogates decision took precedence over the directive. This growing tension left me feeling angry and ineffective, questioning my role in the organization, while watching A. J. linger in a state not chosen. I believed I had failed...