Since I’m between books for a moment, I decided to try to get caught up on back issues of Time magazine. I read Joe Klein’s cover story from the June 11 issue (wow, I am really behind!), “The Long Goodbye.” (I’m not sure if that link will provide the entire story to you...it might be available only to subscribers to the magazine. But if it gives you the whole thing, it is well worth the read.)
In his article, KIein writes honestly about the difficulties of losing both of his parents to dementia and other physical ailments last year. It was the often usual progression of a slow decline, with failure to take medications correctly, followed by a rapid descent into frequent medical problems, confusion, and in the case of his father, anger, belligerence, and stubbornness about how much help he needed. It was heartbreaking, and it must have been incredibly hard on Joe and his family.
He also wrote about the care they were able to get, through the Geisinger Medical Center in Pennsylvania. Geisinger uses the method that other progressive clinics (like Mayo and the Cleveland Clinic) are beginning to use: exploring and researching patient outcomes, with the ultimate goal of quality of life—and of death.
I couldn’t help but be reminded of my own father’s death two and a half years ago. Klein and his family were faced with the decision of whether or not to insert a feeding tube for his mother, and whether or not to rehydrate his father when his kidneys began to fail. The staff at Geisinger took a realistic approach to such end of life decisions, and gave Klein honest assessments of what was happening. When Klein debated whether or not to add a “do not resuscitate” order to his father’s file, a doctor pointed out that in a recent fall, his father had broken two ribs; if they were to try to resuscitate him, they would probably break all of his ribs. Klein added the DNR order.
A few points here. First, this is a good reminder that our medical technology has sometimes exceeded our realities. In other words, just because we CAN do something, doesn’t mean that we SHOULD. Are we taking whatever means necessary to keep a loved one alive simply because we don’t want to let them go, or are we making the best decision for them? As I said, it made me think about what happened with my Dad. When the doctors were honest with us—like Klein, I really appreciated their honesty—and told us that there was no chance of Dad recovering, I think we all knew that we had to let him go. Trying to keep him hanging on would only be selfish and thinking of our reluctance to say goodbye to him...it wouldn’t be giving him any quality of life.
Second, this is yet another reason why I loathe Sarah Palin (there are so many!). She tried to portray end-of-life counseling as “death panels,” and that couldn’t be further from the truth. It is a way for doctors, patients, and families to talk honestly about their wishes, and how they want decisions to be handled if they are incapable of making them on their own. I urge everyone to have this conversation with their loved ones. I will be forever grateful to my Dad that he had the courage to talk to me about such things, and I’m glad I had the courage to listen. I’d say something like, “Well, we don’t need to worry about that for a long time, because we want you to stick around for a while!” But I was listening, and because he told me that he didn’t want to be hooked up on life support if something were to happen to him, it made it easier to sign the papers with my Mom and my sisters to remove him from life support and let him go. Such decisions are painful enough as it is, and the fact that I had talked about it with both my Dad and Mom made it a tiny bit easier to take. Ken and I have also expressed our wishes to each other, and we have living wills.
So here is a big hearty FUCK YOU to Sarah Palin for perpetuating this horrible lie, and for discouraging people from having these discussions.
Finally, this is one of the reasons I am a firm supporter of the Affordable Care Act. Although they bowed to pressure and unfortunately removed the end-of-life counseling provision, the ACA attempts to move caregivers towards a more outcome-based model rather than a fee-for-service model. Expanded electronic medical records capability—records that travel with a patient—is part of that. I saw duplication of services all the time in the lab. More often than not, it was because the doctors didn’t have easy access to full records, so we’d see multiple computer encounters with cultures duplicated in the same day. If they can’t get their hands on them easily, they’re going to cover all the bases and order another test or culture. The model used by Geisinger and Mayo and others includes case workers who manage the care of patients. They don’t make life or death decisions for them, but they counsel the patient as much as possible and maintain frequent contact with the patient’s family to keep them informed. Knowledge is power, and honesty is a necessity for such decisions.
This sort of outcome-based care saves money, but more importantly, it usually provides a more peaceful end to the life of those we care most about. Shouldn’t that be our ultimate goal?