Unexplained consequences of choices we are asked to make
When I became a family member asked to make decisions for my mother several years ago, I was stunned as I experienced the patient’s side of healthcare. I have been a registered nurse for many years, and have worked within End of Life Care for over a decade. We professionals give explanations and offer choices to our patients; these are made with the intention of respecting each person’s right to decide their healthcare course. Yet there is a great divide between these, and also including the outcome of each choice.
My mother had clearly stated to us months earlier, that she wanted only to be made comfortable and helped to live in her home with my Dad. Yet here she was in the ICU, and every possible aggressive treatment was planned for her. When I spoke up and questioned these, I was met with raised eyebrows by the staff at her hospital. Repeatedly, new options were presented; when my family chose to take time to consider each, we were met with the same reaction of suspicion.
It was difficult to see my mother in her condition, my heart longed to have her return to the person she had been only a few days before. My own guilt and my worry that I was doing what she wanted rather than pushing my own agenda on her were only some of the conflicting feelings and thoughts that poured through me. Yet when I shared the outcome of what each procedure, each aggressive medication regime would mean, my father and siblings agreed that this was not what Mom had chosen those months before.
As an End of Life Consultant, I work with people at all stages of health and illness. We discuss the choices that are presented on advanced directives, consider the type environment and support that help each person to feel cared for and cared about. We devise a plan that is fluid and can be updated throughout time, yet one that provides a written basis for their family to make choices from. This I learned as I walked with my mother and my entire family through a serious hospitalization without a written plan.