Wednesday, April 22, 2009

NYT and NPR Media Items

A couple media pieces from the last couple weeks.

1)
First is a story from NPR's Morning Edition - 'Catherine's Choice' - about a woman with ALS who decided to discontinue oxygen therapy at the end of her life. It is a follow up to a 'This I Believe' segment Catherine did about living with ALS and the choices she made, she insisted on, despite the choices ALS took away from her. The most recent piece is about how even at the end, she chose to an extent the circumstances of her death by actively discontinuing life-sustaining medical therapies. Discontinuation of oxygen remains somewhat controversial and they address this in the piece:

A lawyer for the nursing home was consulted. He said in this case, Catherine's decision would not be euthanasia, which is illegal in Massachusetts, because no one would be injecting a drug to end her life. Instead, the oxygen level would be gradually turned down, while a morphine drip would keep Catherine comfortable and calm. She would simply be putting aside the technology that kept her tethered to life.
Thanks to Dr. Jennifer Kapo for alerting us to this.

2)
The NYT blog 'The New Old Age' had a piece recently about the Coping With Cancer Study about the price of 'denial' with regards to suffering and medical costs at the end of life. While good, I have a quibble with the use of 'denial' to describe what the CWCS has found: they were measuring rates of having an EOL conversations, etc. (lower rates-->more costs, worse patient/bereavement outcomes to an extent). This is not necessarily 'denial' as it is popularly imagined; while that may be part of it, this may also be 'simply' a lack of planning (talking) about death due to clinician unwillingness, patient unwillingness, etc. 'Denial' per se may not have entered into it. That's a quibbling point, but I'm bringing it up as I kind of hate the term, find it imprecise, often used inaccurately and perjuratively against patients, and am actually looking for a decent, useful, working definition of it. Any thoughts?

Thanks to Dr. Mamta Bhatnager for alerting us to this.

3)
The same blog also has a piece on 'why we avoid advance directives,' suggesting a big reason is that people are afraid they're only about limiting care:
One reason is that advance directives may be misperceived, theorized Nathan Kottkamp, a health care attorney in Richmond, Va., and organizer of this month’s National Healthcare Decisions Day. People may equate such documents with limiting care, with “pulling the plug.” In fact, Mr. Kottkamp said, “Your living will can say you want every medical treatment known to science applied to you at the end of life. Or no treatment. Or anywhere on that spectrum.”
What's missing however is that ADs, even when patients have them, have yet to be persuasively shown to actually improve EOL care, or even be honored, and while I think naming a health care power of attorney is a great thing, we've discussed on the blog before how what is documented in ADs are often difficult to interpret at life's end. 'I don't want tube feeds.' Neither do I, but does that mean never, ever, under any circumstances, even if your doctor thinks it might be part of a reasonable resorative care plan? Patients might write 'I want to be comfortable when I die...not have any heroics...not have my dying prolonged.' Again - who doesn't? Only a tiny fraction of patients would want anything else; the problem is doctors identifying that a patient is dying, and communicating this in a way such that the family understands, accepts, and feels comfortable making decisions based on that reality. If this doesn't happen, ADs aren't going to help much, and while I have the occasional family who presents an AD to me and says 'you have to stop doing this to my dad,' that's rare enough that my own suspicion is that this very rarity is why ADs haven't changed much.

Rambling on here, I was also struck about the language used in that quote about your living will saying you want every medical treatment known to medical science. While true, I guess, it takes me back to (my understanding of - I was a child at the time) the origins of the AD/living will movement as a way to protect patients from unwanted, unnecessary, suffering-inducing care at the end of life. Not as a way to prescribe doctors to do 'Everything.'

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