A Horror Story
What makes this story so scary is that it could happen to any of us. The whole article is worth reading. Here are a few passages:
[My parents] stoics and religious agnostics. They signed living wills and durable power-of-attorney documents for health care. My mother, who watched friends die slowly of cancer, had an underlined copy of the Hemlock Society’s “Final Exit” in her bookcase. Even so, I watched them lose control of their lives to a set of perverse financial incentives — for cardiologists, hospitals and especially the manufacturers of advanced medical devices — skewed to promote maximum treatment. At a point hard to precisely define, they stopped being beneficiaries of the war on sudden death and became its victims.
It was a case study in what primary-care doctors have long bemoaned: that Medicare rewards doctors far better for doing procedures than for assessing whether they should be done at all… The pacemaker bought my parents two years of limbo, two of purgatory and two of hell. At first they soldiered on, with my father no better and no worse. My mother reread Jon Kabat-Zinn’s “Full Catastrophe Living,” bought a self-help book on patience and rose each morning to meditate.
I read the whole article in The New York Times. I agree that it is scary. It could happen to any of us.
I agree with Nancy. This should not be happening. People are not in control of their destiny. They are victims of impersonal forces over which they have no control.
The reason the patient and his family is not in control in this awful situation is that Medicare controls the money. So to the doctors and hospital staff, Medicare is the client, not the patient.
If you want the patient to be viewed as the real customer, the patient and his family have to control the dollars.
All this was explained very clearly in “Patient Power,” years ago.
Clearly institutional incentives have become perverse. Very perverse.
The dark side of aggressive intervention is that, we, as a society, are spending an increasingly large portion of our lifetime earnings on medical interventions that offer little in the way of quality-adjusted additional years of life.
The problem with that is it leaves less resources for other things like housing, vacations, transportation and other lifestyle-enhancing amenities during our youth. We cannot have our cake and eat it too.
I had a strange thought while reading this: It’s like Frankenstein in reverse. We would be horribly disgusted if there were a creature that was brought back from “beyond” by a tiny box of wires attached to its chest. Pulling the plug would be easy.
But, because the creature still reminds us of our loved one (and because the decline is gradual), we can’t see the difference between it and something that is no longer there. And the “humane” thing to much harder to discern.
Death is a strange and horrible thing.