Similar to many healthy adults I never spent much time thinking about the end of my life, what I would want, or who I would want making decisions for me if I were unable. That is, until I started working in advance care planning. As I began my journey working as the coordinator for advance care planning team I found myself talking more and more about dying with the people around me. As these conversations continued there was confirmation that I was not the only adult who had not thought about my values and beliefs surrounding my inevitable passing. These conversations confirmed what research has already told me—around 70% of people think that having an advance directive is important, yet only around 27% have completed the document.
My mom and I have always had a close relationship. We both know that if she ever needs me that I will be there to help or support her in any way possible. As I spent more time talking to her about advance care planning and advance directives she reminded me that she had a hand-written note located in some white box that states she “does not want to be a vegetable”. Imagine my reaction! I was aghast that she felt this would be enough to use should I have to make medical decisions on her behalf. However, many adults use phrases that mimic that same narrative. Often, we think those who love us will know what to do if they need to make decisions for us, however roughly 40% of the family members who find themselves in this unexpected situation suffer PTSD and forever question their decisions. Truthfully, many people are surprised by the wishes their loved ones would have once they begin the conversation.
As for my mother, we began to go through the Respecting Choices
at Beaumont advance directive document and discuss her options for treatment. One myth we tackled was that this is not a medical order, or something set in stone. The advance directive document is a guide for our advocates to ensure that we are providing them with the confidence and tools they need to make medical decisions on our behalf. I discovered other important things about my mother’s wishes, such as what she considered a reasonable amount of time to have breathing support or tube feeding. We talked about what is important to her if she does pass away and what a “good death” looks like to her.
Advance care planning and advance directivesare not just for the elderly, frail, chronic or terminally ill, it is for all adults 18 years old and over. Completing your advance directive ensures that if you lose capacity to make decisions, your wishes and values will be honored in a shared decision-making conversation with your patient advocate and physician. Through advance care planning, we empower ourselves and provide a sense of relief and understanding for our patient advocates and family.
I have completed my advance directive as a gift to my husband, my parents and siblings, and especially for my children. You should also make your wishes known; contact us at beaumont.org/respecting-choicesor 947-522-1948.
– Amy Fresch, Beaumont Health, Advance Care Planning Coordinator