Friday, December 7, 2012

Why I'm Pulling the Plug on "Pulling the Plug"


I think I’ll ban “pull the plug” from my usage, much as I did years ago, as a journalist, and learned from Strunk & White that people, in print, ought never to “pass away.” They die. Simple and sad as that. Sometimes they die after they are disconnected from a ventilator, feeding tube or other life-prolonging measure.
I’m thinking about this as I begin research into the Liverpool Care Pathway, an apparently effective means of allowing a dignified death while keeping a patient’s wishes and best interests in mind throughout end-of-life medical care -- but which has become quite controversial. Some UK media seem to have gotten aboard the “death panel” band wagon in a big way.

But the reason “pull the plug” is on my mind is that it’s the phrase someone on the West Coast used to describe to me what occurred earlier this week to a mutual friend. He’d been on life support for more than a week, after he suffered a stroke and collapsed in his home. That damage to his brain is irreversible and, despite the suddenness of this catastrophic event, his family has accepted that he would not wish to continue life mechanically prolonged in a vegetative state. He had said as much to another mutual friend on more than one occasion. 

I’m sad for my friend and his extended family, and I admire them, and the friend who had the foresight to engage in the conversation about values. I know nothing of the dialogue that has taken place with doctors in making the decision to allow him to die, and perhaps the decision was easy to make, relatively speaking, and it was clear to all that there would be no recovery of any meaningful kind. And yet my friend is from a Catholic family, as am I, and agreeing to the removal of life-sustaining technologies and forced nutrition is no simple step.

When I learned of my friend’s fate, I had just read for the second time UK physician Max Pemberton’s recent piece in The Telegraph, “The Liverpool Care Pathway Leads Away From Pain.” There’s no telling how many times I’ll read it before I’m through. I want to know it by heart. It’s that good.

The Liverpool Care Pathway strikes me as the sort of thoughtful and bold approach to care at the end of life that is very much needed in the United States, especially for those for whom the dying process is prolonged and full of uncertainty.

It needs to be thoughtful because, well, it’s about care of the dying, who have a way of surprising us and not dying when we think they will, and whose own wishes for how they die, if known, can range from "do everything to keep me alive" to "if I'm a vegetable, let me go quickly." And it needs to be bold to overcome the “death-panel fear-mongers,” to borrow a phrase from a recent New York Times editorial. (A thoughtful and bold editorial, I might add.)

Such fear-mongering isn’t unique to the U.S. Indeed, Pemberton’s piece is in part rebuttal to coverage that has made the Pathway out to be more about economics than compassionate care, which, if true, would indeed be unfortunate. It does appear that in some cases, consent was not well informed (good communication shouldn’t be a speciality in medicine). Lawsuits have been filed, and an independent inquiry is under way. (More here)

The Pathway has in some UK media acquired the nickname “death pathway,” which is not meant as a compliment. But my sense is that the Liverpool Care Pathway has a lot more to do with compassionate care and dignity in death, and Pemberton makes this case well.

Also worth reading regarding the Pathway, and the key role nurses play in making it work, is a story in NursingTimes.net. The author, like Pemberton, writes of personal experience with the Pathway, and one notably helpful and compassionate palliative nurse in particular. 

“The LCP is not the problem, but its implementation, in some cases, is. Those cases are entirely unacceptable and should face the full fury of the media and patients when they happen,” writes health journalist Shaun Lintern.



“Nurses grappling with life and death issues face incredible pressures; you go into this job to save lives, not to watch them fade away. One possible reason for the lack of communication with some families could well be a reluctance of some nurses and junior doctors to have those incredibly tough conversations with patients and families.”

I'm grateful that this does not seem to have been the case with my friend and those in the thankless position of speaking for him about how he'd wish to die.

2 comments:

  1. Paul, we must have some cross-continent vibe going, because on the 16th I blogged about "How Euphemisms for ‘Dying’ both Serve and Obscure." As a citizen end of life reform advocate who tries to be very careful about, and with language, I have continued to use "pull the plug." I'll have to think a bit on it; is this phrase more euphemism or metaphor? Does it relate more to the dying or to the environmental setup (after all, we don't pull the plug on someone who's not enmeshed in an ICU or critical care facility)?

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