Have you had THE conversation yet?

“You guys are lucky, you know,” one of Jane’s nurses said to me one of the times Jane was in a coma. “You’ve talked about this.”

I think I must have looked at her like she had two heads. When your wife is unconscious and you have no idea when–or if–she will wake up, the last thing you think about is luck.

Of course she didn’t mean lucky in the traditional sense. There was no luck involved in my knowledge of what Jane wanted in terms of treatment when she was unable to make those decisions for herself. Once a year, every year, we set aside time to talk about end of life issues–not about funerals and burials–but about when it was time to let go and let nature take its course.

Neither of us wanted a life that was not life–and had no chance of becoming real life again. Neither one of us wanted a series of heroic measures that would merely prolong life if there was no actual chance of recovery. And neither one of us wanted the other to be in the dark when it came time to make those decisions.

I will not lie about how difficult those discussions were. Even when we were in good health, those hours were among the most uncomfortable of our relationship. It is not easy to listen to someone say to you, “When the time comes, let me go. No paddles to the heart,  no heroic measures–when there is no fighting chance of my recovery, let it end.”

The weekend before the surgery that conversation was even more difficult to get through. It was no longer a hypothetical possibility that I would have to make that decision–it was terribly real. And while it is difficult to hear–it is also difficult to say.

“Listen,” the nurse said. “Two-thirds of the people that come through that door have never talked about the end the way you two have–about how you want it to be.”

The door she had pointed to was the door of the Cardiac Surgery Post Operative ICU.

“You’re  kidding,” I said.

She just shook her head. “I wish that I was.”

Two weeks later, I learned just how horrible the consequences of not having that conversation could be. A patient was in a deep coma. They asked the spouse what they should do. That person’s only response was “I don’t know. We never talked about it.”

The cries from the next room thereafter still haunt me.

As often as I talk to people about neuroendocrine cancer and carcinoid syndrome I talk about this: that here is no more important conversation that you can have with a loved one than the conversation about end of life wishes. There is no greater expression of love you can make, though it will not feel like it at the time, than to let those you care for know what it is you want when you are no longer able to make your wishes known.

Hard as the last 34 hours of Jane’s life were for me, they were infinitely easier than they might have been because I knew exactly what she wanted that ending to look like.

If you have had that conversation–good. If you have not, have it today. You never know when you are going to be placed in that position. Don’t leave your loved ones in the position of having to say, “I don’t know what to do.”

And after you have had that conversation, make out a living will and sign it.

Do it today.

Posted by walking with jane on September 28, 2011

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