By Craig Greer
Most people don’t usually think about advance directives until a crisis occurs. This often leads to confusion and sometimes conflict if a person has never discussed the types of care they would want if they were unable to speak for themselves.
Advance Care Planning is more than just the legal document called an Advance Directive. True planning is about talking with loved ones and making sure they understand the types of treatment you would and would not want if faced with a life threatening or life limiting illness. The birth of the Advance Directive came through the courts. Life support technology outpaced our understanding, which means that if people did not recover, they could still be kept alive. No one knew when it was appropriate to turn off the machines. It had ever discussed before.
Today, we have gotten better about the legal document, but we have not improved our discussions with loved ones about our wishes. Too often this conversation only happens when a terminal illness has been diagnosed – and that is the worst possible timing. People avoid the conversation out of fear of appearing to give up.
Respecting Choices, a group out of La Crosse Wisconsin, developed a great program for hospitals, medical practices, social workers and churches to use. It encourages advance care planning in three stages.
The first stage is for people over the age of 18 to determine who would make medical decisions for them if they are unable to speak for themselves. This includes a discussion of types of life support they may want and under what conditions. An example: I would want to be on a respirator if there is more than 20 percent chance that I will recover, or I want everything done to keep me alive.
The second stage of advance care planning is for people with a chronic illness. For instance, a person with heart failure or COPD can live a long time with good quality of life on medications. There comes a time when the medications no longer work and it is important to discuss what types of medical treatment a person might want and a discussion of when they might want to receive only comfort measures instead of aggressive treatments.
The last stage is for those who have been diagnosed with a terminal illness. For these people, it is important to discuss whether or not they would want CPR if their heart stopped beating and other aggressive interventions such as tube feeding, or a respirator.
Having these discussions while a person is healthy is never easy, but it is more difficult if faced with a life threatening illness. We should have these discussions periodically throughout our lives as we age and as our health condition changes.
My advance directive was different from my 30’s than it is now that I am in my 60’s. My wife and I have had many conversations over the years and have filled our advance directives out together and we are currently reviewing them again. We also make sure our children know our wishes.
Today, physicians are getting better about asking patients what interventions they would want, but this is a conversation that must happen with all members of the family so if and when the time comes, there is clear direction as to the wishes of the patient.
For more than 22 years I worked in hospice and one of the most difficult things to hear from family members is: “I know what I would want, but I don’t know what my ______ would want.”
There are great, free resources available on the internet including Five Wishes, The Conversation Project Starter Kit and much more.
One of the best gifts you can give your family members is the give of conversation. It is a difficult thing to do, but one of the most important conversations you can have with loved ones.
Craig Greer is the Director of Special Projects with KanTime Hospice Software.