Tuesday, 14 January 2014

Liverpool Care Pathway - Fighting For Her Life

In 1939, this country chose to fight for its life rather than just roll over and die. We had a Churchill at the helm, not a Quisling.

This is Salon – 
Lisa Bonchek Adams is a mother of three living with Stage 4 breast cancer. She blogs and tweets about what she is undergoing and the decisions she is making about her health; she does so frequently and to a large audience that’s rooting for her. And to a prominent husband-wife pair of journalists, she’s somehow offensive.
Bill Keller, the former executive editor of the New York Times, published an Op-Ed in that paper today indicating that Adams, in spite of the image of positivity and strength she generally broadcasts on her social media platforms, is dying and doing so in a manner somehow undignified; Keller draws a comparison between Adams and his late father-in-law. “His death seemed to me a humane and honorable alternative to the frantic medical trench warfare that often makes an expensive misery of death in America.”
Keller's account of his father-in-law's death may be read in the New York Times. He expresses his admiration for the way of death that has become to be epitomised by the Liverpool Care Pathway, but which has been rolled out in many forms and under many guises across the UK and worldwide.

Ms. Adams does not fit the remit of this perception. The road she has taken; the choices she has made do not fit well his picture of what the way of death should be. It does not the fit the 'death with dignity' he envisages death should be.

Lisa Bonchek Adams Blog
The issue Keller has with Ms. Adams is not that she blogs about her human condition; it is her choice to draw a line in the sand and to stay and fight her Alamo.
Keller indicates that Adams’ personal decisions about her health, and her expressing herself online, somehow detracts from people who choose not to undergo experimental treatments or who choose to slip under with less of what is traditionally known as “fighting.” He even finds a Stanford associate dean who is willing to say that Adams “shouldn’t be unduly praised. Equal praise is due to those who accept an inevitable fate with grace and courage.”- Salon
Ms. Adams' decision to fight for her life should not be "unduly praised". 

Keller's obsessive stance and single-mindedness to seek justification for it, to lend it validity, belies his determined attack. His behaviour is without honour and lacks dignity. But this is vitriol.

Keller is one half of a journalistic partnership. This is the Brooklyn Magazine –
Lisa Bonchek Adams is a woman who is living with Stage IV breast cancer, which means that the cancer has metastasized throughout her body. There is no Stage V. Bonchek Adams has chronicled her fight with cancer on her website and also on twitter, where she gained the attention of Emma Keller, a writer for The Guardian. Keller recently wrote a piece (with Bonchek Adams as the subject) which questions the “ethics of tweeting a terminal illness.” Keller’s piece was met with no small amount of outrage because, rather than focus on what Bonchek Adams was doing, Keller instead writes about her own discomfort with the notion of publicly documenting a struggle with cancer. Keller—vampirically—takes someone else’s personal story and makes it about her own problems with the practice of personal disclosure, writing “Should there be boundaries in this kind of experience? Is there such a thing as TMI? Are her tweets a grim equivalent of deathbed selfies, one step further than funeral selfies?”

And as if it wasn’t enough that Emma Keller pretends that Bonchek Adams’s documentation of her struggle with cancer is some kind of “ethical dilemma” (it’s absolutely NOT a question of ethics at all, and Keller can always, you know, not read, and not become “obsessed” if she has a problem with it), Emma Keller’s husband, Bill Keller, wrote his own editorial for the New York Times (of which he is the former executive editor) yesterday, which seeks to further delegitimize Bonchek Adams’s voice by comparing the way she is dealing with her illness to how his father-in-law dealt with his. 
Is this the ethics of whether someone should publicly blog and tweet their daily highs and lows, their struggles with their condition? Dr. Granger has a flock of tweeting groupies rooting for her. She has publicly used her struggles, her condition and her position to promote the LCP. Ms. Keller, herself a tweeter, has not had an "ethical dilemna" with this.

According to Mark Drakeford in Together for Health, dying is a "social matter" in any case. That is the 'ethics' of EoLC expounded in the ministerial foreword of this Welsh Government document. And both Kellers have made the EoLC of Mr. Anthony Gilbey, a father and father-in-law, a matter of public deliberation.

"Obsessed". Why should Ms. Keller become obsessed with a blog that documents a struggle with cancer? Are both Kellers struggling with something? Is this a daughter and son-in-law suppressing a regret and an anger that those LCP medics did somehow fail a father and father-in-law in standing down and not fighting for his life?

This is misplaced vitriol, projected at someone who is standing up with determination against an unrelenting foe.
UPDATE at 1 p.m. EST, Jan. 13: The Guardian has deleted the piece by Emma G. Keller discussed below, noting, “This post has been deleted with the agreement of the subject because it is inconsistent with the Guardian editorial code.”
- Salon
This is a daughter and son-in-law suppressing a regret and an anger that those LCP medics did somehow fail a father and father-in-law in standing down and not fighting for his life. Effectively, they did what they always claimed not to do; they shortened his life, dosing him up on a "cloud of morphine" in the LCP mix.

Further reading -
Liverpool Care Pathway – Don't Play Ball!

Liverpool Care Pathway - Whither Responsive Care?

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