By Myra J. Christopher, Kathleen M. Foley Chair
Center for Practical Bioethics
Most Americans indicate that they value the right to make health care decisions for themselves and to name someone they trust to make decisions for them if they lose decision-making capacity. Yet, only about 30 percent of us have made an advance directive or named a durable power of attorney for health care (dpoa).
I have made hundreds of presentations to lay audiences and professional groups about the importance of advance care planning, and I’ve heard every excuse possible for why this huge gap exists.
“I’ve tried to talk to my family but they just won’t talk about end-of-life.” I’ve heard young people blame their parents and parents blame their children. I’ve heard physicians say, “I don’t want my patients to think they are sicker than they are or to undermine their confidence in me.” I’ve also heard people say, “My family knows what I want, and they’ll make decisions for me.”
Various studies indicate that there is often significant disagreement between what individuals say they want and what family members think they want. Unless there has been on-point discussion, you might as well flip a coin. People are also shocked to learn that in many states spouses have no authority unless they have been named the dpoa.
If you see what often happens at the end of life when these conversations have NOT occurred — the Schiavo case comes to mind — it is time to stop blaming anyone and to figure out how to have these conversations. To do so, I suggest five things:
1) Go online and get a copy of a decision-making aide, such as “Caring Conversations,” a resource workbook that can be downloaded for free at www.practicalbioethics.org.
2) Complete it and mail a copy to your loved one(s) with a note saying, “I want to talk about this.”
3) If speaking to an adult child, open the conversation by saying, “I need your help. It is important to me that we talk about what I would want if I were seriously ill and unable to make decisions for myself. It is time to talk. ”
4) If speaking to an elderly parent, say, “I need your help. I’ve tried to talk with you about these issues, but it seemed awkward. I thought that, if you saw my thoughts about end- of-life care, it might be easier for us to talk. We never know; someday you could have to make decisions for me and there are things I would want you to know. If someday, I have to make decision for you, I want to respect you and what you would choose. ”
5) If speaking with your physician, say, “I brought a copy of my advance directive for you to put in my chart. Next time I’m here, I want to talk about it and for you to assure me that you will honor my wishes or refer me to a physician who will.”
Remember sometimes the hardest conversations are the most important ones to have!