From my perspective, there's nothing worse than having to stand helplessly by as your spouse suffers through a debilitating, ultimately terminal, illness. So I've already experienced the "or worse" in my marriage, and, although it has been nearly three years since that terrible time, it still haunts me. I suppose it always will at some level. But would I have chosen not to marry if I had known what the "or worse" was going to be? Of course not. As heartbreaking as it was, in the grand scheme of things, it was a small price for me to pay for 47 years spent loving, and being loved by, a wonderful man.
All too often the "or worse" moments in a marriage, especially a longterm marriage, involve the type of debilitating, potentially terminal illness my husband experienced—while I stood helplessly by praying for a miracle that never came. I have several friends who are living that nightmare now, and it saddens me to see them struggling through endless days sitting by hospital beds, or waiting in doctors' offices, emergency rooms, chemotherapy suites… All too often, these friends (some in their late 70s and early 80s) are being asked to make medical decisions they don't fully understand, and not knowing what questions to ask. Is this how we are supposed to spend our "golden years?"
Watching what my friends are going through now—and remembering what Art and I went through three years ago—has started me thinking about the issue of quality versus quantity of life. As fate would have it, a fellow medical writer recently sent a link to a wonderful article about how doctors deal with this issue when faced with medical crises in their own lives. There is a lot of "food for thought" in this article. I think everyone should read it. Here is the link. http://zocalopublicsquare.org/thepublicsquare/2011/11/30/how-doctors-die/read/nexus/
After reading the article, I couldn't help but think about how nice it would be if we could have a national conversation about this issue without it being used as a political football; and without the use of the term "death panels" being thrown out there to scare senior citizens, or anyone with a life-threatening medical condition. Wouldn't it be nice if patients faced with a potentially terminal illness could feel comfortable about asking their doctors to thoroughly discuss the pros and cons of the treatments they are recommending? Perhaps more importantly, wouldn't it be nice if, when recommending a new cutting edge treatment—or any treatment—to a grievously ill patient, doctors could feel comfortable about talking honestly about quantity versus quality of life issues without fear of being accused of "rationing care?"
During the "or worse" moment in my marriage, I was faced with having to make a decision about how aggressively I wanted doctors to continue treating my husband. Unfortunately, he was not in a position to make that decision for himself, but, because we had both included advance directives about our end-of-life care in our wills, I knew his wishes. It is unimaginably difficult to make the decision to let go of a loved one. You always want to believe there is some miracle treatment that will stave off the inevitable. Fortunately, I had a doctor who was honest, and brave, enough to say, "I think it's time for comfort care." It was painful to hear, but it was the truth.
