Difficult Discussions

A month ago my husband got the call: Shirley Horn is gravely ill and not expected to live much longer. The caller was not someone John knew, but the man said Shirley’s husband had asked him to call and tell John that Shirley was brain dead and on life support that might soon be stopped. John called Shirley’s husband and daughter repeatedly, but there was never an answer; and so we’ve been waiting for news. For the past two days, a single email message from singer Gail Marten has been circulating and it says that Shirley is conscious. I don’t know if it’s true, but I hope so…or do I? What does Shirley want? To me that is the only question that matters. We don’t often talk about one’s quality of life; the brief flurry of discussion caused by Terry Shivo’s case having died along with her.

In some ways, I feel it to be a simple matter, albeit one that can only be defined on an individual basis. One feels his or her own quality of life either to be, or not to be, up to a tolerable level. But defining that level is not something you can really do in advance. We think we know today what we consider to be minimal quality of life, but unless you have experienced a truly serious illness, you simply do not understand how profoundly your views and opinions about what is important can change. What you think would be intolerable today may feel to be only a minor nuisance tomorrow.

I believe we must think about such things, and plan as best as possible, but the best plan is an ongoing dialogue with those you love. A slip of paper in your wallet can help with the legalities, but you should re-read that directive often and and re-write it as needed. Those who find it to be an easy discussion probably should think again. It may seem simple today, especially if you’re talking about what you want for yourself, but it may not feel that way later. It is a discussion that fits hand in hand with the right to die, and letting a loved one go is never easy.