The old saying goes: “there is nothing certain in life except death and taxes.”National Healthcare Decisions Day, the day after tax day, will remind us of that on April 16. It is a day to pause and think about the future.
It is estimated that over half of us will not be able to participate in decisions about the kind of care we want at the end of our lives. The end of life can be particularly painful for people and families experiencing the losses of dementia. How will we respond when the doctor turns to us and says, “And what would your mother want in this situation?”
Here are a few suggestions from years of working with people through these difficult situations: Utilize the Conversation Project Starter Kit to identify values and wishes.
Talk! As a family, as caring, intimate friends, a book group or as a faith community. It is a gift to those who love us.
Designate a decision-maker (agent) but talk to other family members, as well.
Start talking at the time when dementia is diagnosed. People don’t lose their capacity to share values and be heard on the day they receive the diagnosis.
Go slowly if need be. Try tackling one Starter Kit question at a time. “Tell me, are you more worried that you will get ‘overly aggressive care’ or ‘not enough care’?” – that may be enough for one chat!
Your family group can use the Starter Kit to reflect on your loved one’s values and wishes even if they can’t participate. How did they live their life? What was important to them? What would matter to them as they were dying?
A diagnosis of dementia portends significant medical decisions for the future. To ensure that family members are prepared to make decisions or to carry out stated wishes conversations are important. Sharing in a meaningful conversation before treatment choices must be made can avoid later family disagreements. Doing so may draw families together as they try to figure out how to best care for their loved one.
Jean Abbott, MD, MH, Cofounder, The Conversation Project in Boulder County and Faculty, Center for Bioethics and Humanities, CU Medical Center. Visit our website at: http://theconversationprojectinboulder.org/ for resources and to download the Starter Kit.