What would I want?
Advance directives are pre-written instructions specifying the treatment course healthcare workers should take if a patient becomes incapacitated. They are standard of care in the United States, especially for those admitted to the intensive care unit. Each state governs how these instructions are generated and enforced. When advance directives are not known the patient’s family or “healthcare power of attorney” is consulted. They are asked to make healthcare related decisions for this individual based on the premise, “What would the patient want?”
I recently finished a clerkship in critical care medicine where I was involved in the management of patients whose prognosis was grim. On my first day I observed that establishing each patient’s advance directive was crucial. Critical patients are vulnerable to sudden and, at times, unexpected medical emergencies. These predetermined instructions will dictate how the doctor reacts when or if these events occur. Does the patient want to be resuscitated if their heart stops? Would they want a breathing tube put in place if they are in respiratory distress? How long would they want to be kept on life support? These questions and others are asked to those responsible when advance directives are not properly in place.
One afternoon, during “family rounds,” it struck me that perhaps my own wishes for end of life care had changed. Furthermore, were they even properly established? I had always told myself that “I would fight till the end” and that “I would never give up” but I realised that I did not quite fully understand what that meant. As a healthy young adult the thought of specific end of life care instructions had never entered my mind. What if there is no hope in the fight? If I was left in a permanent vegetative state what would I want done? Watching others face these questions meant that I could not hide from them anymore.
My experience in the intensive care unit showed me that many families, including my own, had never spoken together about this sensitive subject. “We never imagined this would happen . . .” or “We never discussed it . . .” are some of the responses I encountered in the intensive care unit. Questions about end of life care are difficult to answer, and unfortunately this can mean they are often neglected up until the instant they are needed. During a time of sorrow I watched as families did their best to cope while trying to make these monumental decisions.
This experience led me to call on my family one night to sit and talk about the “what if?” Influences such as cultural, religious, and familial aspects were entertained; nevertheless, the most important choice we made that night was going forth with the discussion. As we talked, our conversation was tense at times. An emotional attachment was found in each of us as we conveyed our core beliefs on this topic. Relief seemed to be a universal feeling we all expressed at the end, and it is amazing how close we felt as a family in that moment. Reflecting on the experience I realised that we did not understand how each of us felt about his or her end of life wishes. What I discovered in myself was that my original view on the matter of end of life care had changed, and better understanding of self was achieved. When and if these advance directives are required for me, rest assured my family will already know what I would want.Norman L Beatty, fourth year medical student
1Ross University School of Medicine, New York
Correspondence to: firstname.lastname@example.org
Competing interests: None declared.
Provenance and peer review: Not commissioned; not externally peer reviewed.
- The Patient Self-Determination Act (PSDA) as an amendment to the Omnibus Budget Reconciliation Act of 1990. Signed by the president of the United States on 5 November 1990; effective beginning 1 December 1991.
- Johnston SC, Pfeifer MP, McNutt R. The discussion about advance directives: patient and physician opinions regarding when and how it should be conducted. Arch Intern Med 1995;155:1025-30.
Cite this as: Student BMJ 2014;21:g432