By Sandra Lauer and Kathleen T. Grimm
National Healthcare Decisions Day is today. This is a day set aside to inspire and motivate everyone to talk about advance care planning. The theme for 2016 is “It Always Seems Too Early, Until It’s Too Late.”
The community outreach team at ECMC, “Your Voice/Your Values,” has been spreading this message as one that has meaning well beyond this one day in April. Conversations that focus on what quality living means to each family and each person, and in the context of their values, should be conversations that occur often, and not left for a crisis moment.
When faced with crisis-based decisions of medical intervention, many families report that there has never been any discussion about what the person would have wanted.
There have never been discussions of what was important to them, how they viewed quality living, or how they would have voiced their values if able to speak. Families are aware of many other aspects of a person’s life, but this is an area where families are silent.
It is not a conversation about medical interventions alone. When the focus is on interventions alone, where too much of the focus has been, conflict and confusion may be the result.
Families need to start taking these meaningful journeys in communication early and often as life moves through all its phases: marriage, the birth of children, the death of a close friend, the death of family members, the onset of a chronic disease and progression through disease.
These conversations are so important, yet far too many have them only in a crisis, creating conflict and emotions that are far-ranging, including anger and sadness, creating lasting guilt when no one ever knew “what the person wanted.”
These conversations are not a one-time issue, but ongoing, and should be value-related. Forms are important, but not as important as the conversation.
A friend of mine shared that she had recently had the conversation with her husband, and described it as difficult at first. When she asked him how he would measure quality living, his answer was a beautiful start to an ongoing conversation about his values. He thoughtfully communicated his idea of quality living if he ended up needing care, and couldn’t speak for himself. As long as he knew her and could kiss her good night, that was his value. This is the start.
Tell someone you love what is important to you, what matters to you, and if you can, write it down for them to know if you cannot speak for yourself. If you love your family, the conversation should happen.
Sandra Lauer, R.N., B.S.N., and Kathleen T. Grimm, M.D., M.H.Sc., are members of the Conversation Project at ECMC.