I was recently talking with someone who asked me if I thought that the public debate and private conversations people have about end of life issues were parallel conversations.
This question assumes that there are private conversations going on about end of life issues. Unfortunately, based on my conversations with people who are having to make decisions for their loved ones about what their loved one expressed as to how they wanted their body treated as they neared the end of life, private conversations are not happening.
This question also assumes that there is informed public debate moving forward. All one has to do is say that people are talking about "death panels" and the conversation erupts into a "right to life" discussion. Or, that the government should stay out of what happens in people's lives and not end up with another Terri Schiavo situation.
What many people don't seem to understand is that these conversations go on every day in hospitals and hospices (and even some doctor's offices) all around our country. Or, should I say that decisions are being made every day. Unfortunately, the conversations are not happening because we don't want to admit that all of us are, someday, going to die. So decisions are made in a vacuum -- with information learned about what is possible and what is not possible and what various options might or might not lead to -- under high stress and deep anxiety about wanting to make the choice that our loved one would want us to make ... except we don't know what they might want us to do since we never had a conversation with them about their wishes and how they hoped to be treated as they neared death.
I think that we need to re-label the idea of these "panels" (which never existed to begin with, although people seem to think that they did and/or do exist) as "compassion panels" -- and we need to change our vocabulary in talking with our loved ones to "compassionate discussions" -- so that we are actually talking about how we need to treat people with compassion no matter what decision has to be made concerning a loved one's end of life issues.
Families act out of compassion for their loved one. It is excruciating for family members to watch their loved one "suffer." We are entitled to be pain-free, so people need to know that they can push for more pain medication if they believe that their loved one is suffering physical pain. However, suffering can be more than physical pain. It can include spiritual pain ("Will God be there when I die?"), existential pain ("Has my life been worth something"), psychological pain ("I am so depressed that I am dying."), psycho-social pain ("I am afraid that my family will use up all their financial resources on my health care") and I am sure that people can come up with other "pain" that people suffer. So, decisions are made -- or not made -- for many reasons, not the least of which is, people may not know what the person's wishes were regarding how they wanted their body treated and whether or not they wanted their life to be one of quality or one of quantity.
There are many ways to learn about what options and choices you may have to face. You can ask your health care provider, or you can do research on your own. There are many good books out there, including mine. Or, you can attend the upcoming Compassion and Choices conference at the end of this month in Chicago.
So, don't let the politicians or anyone who thinks that you should not talk with your loved ones about what your wishes are concerning how you want your body treated as you near the end of your life, win out over being educated ahead of time. If you want those you love to treat you with "compassion," you need to know what your options are and you need to let others know what your wishes are.
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