One Family's Story

by Dan Rothschild

I wasn't looking forward to discussing my health care and dealing with my body after I died with my adult children (32 and 34). Who would? My wife, Susan, and I have talked about several issues on this subject over our 36 years of marriage but we have never covered the full range of situations that might arise if we are no longer able to communicate our desires about our care.

The Five Wishes workshops made the whole process easier for me to understand, communicate, and provide direction in both written form and verbally with those I love.

Susan and I attended an informational meeting with the Congregation B’nai B’rith Mental Health Initiative committee and their partner, the Alliance for Living and Dying Well, last summer that peaked our interest. We had heard stories from friends about families that had experienced end of life illness and the death of a parent with disastrous results. Siblings arguing with siblings, and siblings coercing a parent to make decisions about another parent as their bodies failed to the point of near death and finally death. Susan and I didn't want our children to have to make the decision whether to "pull the plug" or not, when we were nearing the end of our life. I decided to obtain a copy of the Five Wishes outline form and take a stab at completing it on my own. It wasn't as difficult to follow the outline and make decisions as I thought it might be. I was more concerned that due to my lack of medical training and life experiences with aging parents, I wouldn't understand the "grey" areas of mental or physical deterioration.

The first wish required me to designate the persons who would carry out my other wishes in the situation where medical procedure would be required to keep me alive. This responsibility is called "my heath care agent" in this program. Obviously, Susan was my first choice, followed by my son, and then daughter. I would eventually contact all of these family members and ask if they were comfortable carrying out my wishes when I could not do so myself.

The second wish dictated when I want to accept "life-support treatment" such as CPR, blood transfusions, dialysis, antibiotics, or even a feeding tube. Furthermore, I was given the challenge of directing my health care agent to inform my doctor of the level of medication intervention with drugs to reduce my pain at the risk of placing me further from my normal state of consciousness. Eventually I was able to find the language that directs my agent to allow me to die if the extreme medical procedures the doctors propose kept me alive but would not likely allow me to return to the mental or physical quality of life that I had been enjoying previous to the current medical emergency. I can't imagine a more difficult decision for my loved ones to have to make if I had not otherwise made this wish.

The remaining wishes cover the level of comfort I wish to enjoy as I near death, the rituals or interface I want with my family and friends on my "death bed," and eventually my wishes for my physical remains are clarified.

I attended a Monday noon work session with a trained counselor at CBB with my document in hand. The counselor confirmed my execution of the form was very adequate and offered several suggestions to further define my intentions. My counselor assured me that (1) the commitment placed in writing could be updated at any time if I felt a change was needed base on experiences, fears, or additional knowledge and (2) the directives could not be initiated against my wishes, if I couldn't speak or communicate otherwise. The draft document became an easy tool to help me communicate with Susan, my children, and even my parents.

I've spoken with some physician friends about this process and they applauded my planning, but did warn me that they have experienced a few patients who became fearful as they neared the end of their lives and wanted to nullify the document. I didn't find that distressing. It just means that this process is as flexible as I could possibly want it to be. I recognize that I have no idea how heroic I will be when I come to the end of the road. I don't want my children to feel pressured or fear decision-making if I can't make that choice for myself.