This is the best-written newspaper or magazine piece I’ve read in a very long time.
The headline is “What Broke My Father’s Heart,” and writer Katy Butler rewinds her family story to describe what happens when technology–in this case a pacemaker–keeps someone alive beyond the capacity of the mind (and parts of the body) to live anything resembling a normal life.
Anyone who has had to make decisions about serious surgical options and other interventions knows, as Butler describes, how easy it is to just nod, gulp and do the first thing the doctor suggests. Anyone who has come up against the task of putting a loved one’s Health Care Directive or end-of-life preferences into play has brushed up against the experiences behind this New York Times Sunday Magazine piece.
It sounds simple enough on the sunny side of serious illness., then wham. The doctor, and maybe all your family and friends, say go for the chemo. The transplant. The pacemaker. The goal is almost always more time; more technology. Doctors aren’t gods (and most don’t want to be), but it takes a lot of gumption to face one down and demand to hear about other choices…or maybe even to be left alone. And it takes information, determination and an advocate (sometimes more than one) to push back against the health care establishment (hospital, insurance, Medicare) and just say no to the protocol.
Oregonians, the beneficiaries of right-to-die law, tend to think a care directive is a solution, as do a lot of other people. Don’t want to be kept alive by extraordinary measures? Well, fine. Oops, what about the EMTs who must do mouth-to-mouth resuscitation? What about the medical team that shocks your heart back into action? Then there’s hydration, food-in-a-tube, ventilators. Oy. And here most of us get antsy when a waiter gives us five salad-dressing choices.
When that ludicrous scare campaign threatening “death squads” was being waged against health care reform, I wondered how many of the yammerers were currently caring for someone who, like Butler’s father, had gone from a vibrant, intelligent and happy individual to a confused, sick and pain-plagued prisoner. His wife became a prisoner too, something he would have clearly done anything in his power to prevent, had he been offered that choice.
This couple had the stuff that’s supposed to help: a strong relationship with a good, sensitive primary care doc and plenty of dough. This is bad, bad news for all who get medical care only from the Emergency Room and who pay it off for years or slap it on the already overloaded Visa card.
I think there’s an excellent chance that Butler’s article might help change things for the better. We boomers are living longer. It’s up to us how to define what that means, and that requires a lot of thought and clear instructions to each other ahead of time.