How do you talk to someone about their end of life care? That is the recurring question people have asked me since release of my book, A Better Way of Dying, last month. It is usually asked by a relative of someone whose health is failing, who's heading down that slippery slope from health and independence to loss of control and eventual death. You know a time is coming when you will have to make decisions for your loved one about how aggressively to sustain life when the body or mind is clearly failing. How do you have that essential conversation that will let you make decisions that you know are consistent with your loved one's wishes?
The first step is watching for an opening. It may come as a small aside in conversation: "I'm just so tired," or "I don't know why I have to hurt so much." You can respond to any such vague, global statement with a simple question, "Mama, can we talk about your health for a minute?" The opening also might be on the subject of what happens to "stuff" after the person dies. You can also interrupt a pensive moment with "What are you thinking about, Pops?" Whatever the answer is, follow it with, "Do you ever think about dying?"
Next comes a loving affirmation, a reinforcement of the importance of this person in your life. "Mom, I've been so lucky to have you active and healthy for so long. Every day that you're still here is a blessing to me." If possible, remind them of some long, slow, painful death you've observed together. "I wish you could live forever, but we both know that a time will come when your health will change. I'm really worried that someday you won't be able to make your own decisions, and I'm going to have to make them for you. And I don't know what you want me to do when that happens. I want to know that I'm making the choices you want me to make, but I can't if we don't talk about it."
Now you've broached the subject, and it's time to talk about possible choices. The rest of the conversation involves the options and timing decisions discussed in my book. If they are a reader, offer them A Better Way of Dying and ask them to read it. Or, start by describing the usual choice: "The simplest thing to do would be just to tell your doctors to keep you alive as long as they can. And that's what I'll do if that's your choice. But I'd like to know if you can imagine some condition where you might want me to tell them to stop keeping you alive and let you die a comfortable natural death, like if you had a stroke and were in a coma." Go through the timing options listed in the Contract for Compassionate Care - show them the Contract and let them start thinking about it.
I hope this is helpful to some of you. I'd like to hear about your specific situations and conversations, and offer suggestions if you're stuck. Let's talk - it's an important subject.