Here is an excellent post by Janice Lynch Schuster on Disruptive Women in Health Care. The occasion was Steve Jobs' death, but she draws broader lessons.
Here's the one that struck home most to me:
For many years now, I’ve written on this subject with Dr. Joanne Lynn, a geriatrician and hospice physician. In our book, Handbook for Mortals: Guidance for People Facing Serious Illness, we talk about the living with/dying of conundrum. Americans like to talk about “the dying” as if they were a different sort of person, in contrast to the rest of us, whom Joanne characterizes as the “temporarily immortal.” Once someone has been labeled as dying, we expect him or her to go about the business of doing just that: taking to bed, saying farewells, making peace with God, signing up for hospice, giving up daily routines and purpose. We think of the dying as a distinct group, with different interests, and an entirely different role to play in this life.
The fact is, for Boomers like Jobs, we will spend many years dying of something. Nearly 80 million of us are aging together, and along the way, we will accumulate illnesses of old age: heart disease, cancer, and Alzheimer’s. Thanks to modern medicine and public health, we will live for a long time with what have become chronic conditions. Where these diseases once killed swiftly and uniformly, they are now chronic conditions with which we live—and from which we die.
5 comments:
Hi Paul,
This raises an amazing issue that does not effect just the patient community but the community as a whole. Sufferers come from all walks of life and in some cases do not want to just sit around and wait what could be decades for death, they want to enjoy life as best they can. I know, because I have a neurological degenerative disorder that one day might kill me, but not for a very long time.
Essentially what is needed is a fundamental shift in the psyche of society as a whole. The question is, how do we do that?
Bravo. And now we hope that docs of Western medicine (and insurance companies) learn how to LET US LIVE without nagging, poking, and on the other spectrum...giving up on us because we are not dying swiftly enough.
A gut-wrenching fact is that the law of diminshing returns applies to extending death. Ever smaller improvements are coming at ever greater costs. Or, even no improvements in mortality can cost a fortune.
How about $50k in "exploratory" surgery on a comatose 98 year old? When I talk to friends about this, every one has seen this kind of thing in their own family. They're bewildered by it. Families need to learn that it's okay to just say no.
Tom, I believe you make an important point. There is often discussion of exorbitant costs in the last year of life - but it's difficult to determine when someone is in their last year of life. When one is experiencing it from the perspective of chronic disease, it doesn't seem like it will be the last year of your life, but lack of response to treatment, or complications, or a drug reaction, or many things can make it so. As with everything in medicine, it's not simple.
nonlocal MD
The immutable advance of death marches forward whether we want it to or not. Quickly or slowly, death will take all of us. The important part of this story is that doctors need to know when and how to intervene so that we may live at our best and die at our best. It's not all that easy to do this, but it would be hard to find a person for whom this wouldn't be true.
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