As noted in earlier posts here, here and here — as well as in connection with the final years of Dr. Michael DeBakey — one of the thorniest issues confronting effective reform of the U.S. health care and health care finance systems is the extraordinary allocation of health care resources to end-of-life care under the current systems.
My interest in this issue prompted me to note this insightful NY Times op-ed from over the weekend.
The author of the piece — Dudley Clendinen – is a former national correspondent and editorial writer for The Times. He is terminally ill with amyotrophic lateral sclerosis (ALS., more commonly known as Lou Gehrig’s disease) and is preparing to die in the most peaceful and efficient manner possible:
There is no meaningful treatment. No cure. There is one medication, Rilutek, which might make a few months’ difference. It retails for about $14,000 a year. That doesn’t seem worthwhile to me. If I let this run the whole course, with all the human, medical, technological and loving support I will start to need just months from now, it will leave me, in 5 or 8 or 12 or more years, a conscious but motionless, mute, withered, incontinent mummy of my former self. Maintained by feeding and waste tubes, breathing and suctioning machines.
No, thank you. I hate being a drag. I don’t think I’ll stick around for the back half of Lou.
I think it’s important to say that. We obsess in this country about how to eat and dress and drink, about finding a job and a mate. About having sex and children. About how to live. But we don’t talk about how to die. We act as if facing death weren’t one of life’s greatest, most absorbing thrills and challenges. Believe me, it is. This is not dull. But we have to be able to see doctors and machines, medical and insurance systems, family and friends and religions as informative — not governing — in order to be free.
And that’s the point. This is not about one particular disease or even about Death. It’s about Life, when you know there’s not much left. That is the weird blessing of Lou. There is no escape, and nothing much to do. It’s liberating. [. . .]
I’d rather die. I respect the wishes of people who want to live as long as they can. But I would like the same respect for those of us who decide — rationally — not to. . . .
After World War II, the U.S. health care system was a leader in the medical world in embracing the optimistic view of therapeutic intervention in medicine, which was a fundamental change from the sense of therapeutic powerlessness that was widely taught to doctors by pre-WWII professors.
Isn’t it ironic that this remarkable health care system has not yet figured out a way to allow elderly patients to die in a peaceful, dignified and non-wasteful manner?
My father died a relatively dignified death but only after firm limits were imposed with his doctor at his nursing home. Once the decision was made to not intervene was he able to pass peacefully. Word of advice: make sure your family knows what you want…that is the driving force when you can no longer make choices at the end of life.
the passage you selected shows a wise man, embracing the other side of life/death well–good for him.
the problem we have is most life-end situations are not as unambiguously certain as lou gehrig’s.
the solution is not as grizzly as it sounds but it is to restore more of the COST of expensive care to the individual and his family, as it was in 1985, before ronald reagan changed medicare to dictating prices to doctors and hospitals and making the patient’s costs artificially low—hence our budget and end-of-life-price-tag woes.
I heartily agree with Dr Tom. If the costs were on patients and their families, most people would not choose to destroy their families’ finances for a chance at another year in assisted living. But because the payer is a remote, faceless entity, most people actually feel like they’re taking from their families if they don’t accept all the care they can get, even if it only buys them one week in a hospital bed.