Ed Cone linked to this must read article. Since my Mom doled out my brother's and my responsibilities I've thought a lot about end of life issues (she wisely put him in charge of finances, and, hopefully also wisely, me in charge of the plug). Really, please read the article as it raises some important questions we need to answer in our society. An excerpt:
People have concerns besides simply prolonging their lives. Surveys of patients with terminal illness find that their top priorities include, in addition to avoiding suffering, being with family, having the touch of others, being mentally aware, and not becoming a burden to others. Our system of technological medical care has utterly failed to meet these needs, and the cost of this failure is measured in far more than dollars. The hard question we face, then, is not how we can afford this system’s expense. It is how we can build a health-care system that will actually help dying patients achieve what’s most important to them at the end of their lives.
Lest you think I'm not serious about my responsibilities based on my use of the flippant phrase "in charge of the plug" you should know that I take it very seriously. Humor, in my case, is definitely a defense mechanism. In my mind someone's last wishes are just that, and to countermand those wishes for the very selfish reason that you don't want to let go is just plain wrong. On the other hand I don't think any person can really know what they'll do in that situation so I'm also very worried that I won't have the courage to live my convictions.
One of the reasons I'm concerned about my ability to follow through is that I'm a hopeless believer in the possible. I truly believe that any game can be won with a last-second "Hail Mary." As the author points out, this can be problematic for those trying to make end of life decisions in today's technologically advanced world:
These days, swift catastrophic illness is the exception; for most people, death comes only after long medical struggle with an incurable condition—advanced cancer, progressive organ failure (usually the heart, kidney, or liver), or the multiple debilities of very old age. In all such cases, death is certain, but the timing isn’t. So everyone struggles with this uncertainty—with how, and when, to accept that the battle is lost. As for last words, they hardly seem to exist anymore. Technology sustains our organs until we are well past the point of awareness and coherence. Besides, how do you attend to the thoughts and concerns of the dying when medicine has made it almost impossible to be sure who the dying even are? Is someone with terminal cancer, dementia, incurable congestive heart failure dying, exactly?
Well, no one said it's supposed to be easy.
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This exchange troubled me:“Am I going to die?”
I flinched. “No, no,” I said. “Of course not.”
The correct answer is, yes, you’re going to die, we all are. That is the fact that we, as Americans, don’t deal with, and is not really dealt with in the article. That fact is essential to the lengthy conversations Gawande mentions. My abridged version of the article is that there comes a time in illness when you need a priest and don’t need a doctor.
It’s not just about costs either. I’m glad that Gawande focuses on the quality of life aspects, and often even the length of life! The cost reductions that happen are a positive side-effect.
I liked the dad who said that if he could eat ice cream and watch football he wanted to stay. I could imagine my dad saying something similar, substituting baseball instead of football.