“It is a huge supposition to think they do not feel hunger or thirst.”

So says Dr Laura de Rooy, a consultant neonatologist at St George’s Hospital NHS Trust in London writing in response to an article published in the British Medical Journal of the placement of disabled infants on the Liverpool Care Pathway (LCP).

The LCP was developed to help push those clinging for life off the cliff, so to speak. The elderly and terminally ill. It defines the “care” for patients no longer deemed fit for life in the much-vaunted free NHS. Free for those healthy enough to survive it, maybe. But I digress.

Severely disabled infants have been placed on the LCP. Starving a baby to death. Brings new meaning to the term “care protocol,” no? More:

Earlier this month, an un-named doctor wrote of the agony of watching the protracted deaths of babies. The doctor described one case of a baby born with ‘a lengthy list of unexpected congenital anomalies’, whose parents agreed to put it on the pathway.

The doctor wrote: ‘They wish for their child to die quickly once the feeding and fluids are stopped. They wish for pneumonia. They wish for no suffering. They wish for no visible changes to their precious baby.

‘Their wishes, however, are not consistent with my experience. Survival is often much longer than most physicians think; reflecting on my previous patients, the median time from withdrawal of hydration to death was ten days.

‘Parents and care teams are unprepared for the sometimes severe changes that they will witness in the child’s physical appearance as severe dehydration ensues.

‘I know, as they cannot, the unique horror of witnessing a child become smaller and shrunken, as the only route out of a life that has become excruciating to the patient or to the parents who love their baby.’

According to the BMJ article, the doctor involved had presided over ten such deaths in just one hospital neonatal unit.

One British nurse has the guts to call the practice what it is:

Bernadette Lloyd, a hospice paediatric nurse, has written to the Cabinet Office and the Department of Health to criticise the use of death pathways for children.She said: ‘The parents feel coerced, at a very traumatic time, into agreeing that this is correct for their child whom they are told by doctors has only has a few days to live. It is very difficult to predict death. I have seen a “reasonable” number of children recover after being taken off the pathway.

‘I have also seen children die in terrible thirst because fluids are withdrawn from them until they die.

‘I witnessed a 14 year-old boy with cancer die with his tongue stuck to the roof of his mouth when doctors refused to give him liquids by tube. His death was agonising for him, and for us nurses to watch. This is euthanasia by the backdoor.’

And this is the system we rush to emulate because it’s far more compassionate? Read the rest.

Oh, wait, a parting thought from the doctor:

Some say withdrawing medically provided hydration and nutrition is akin to withdrawing any other form of life support. Maybe, but that is not how it feels. The one thing that helps me a little is the realisation that this process is necessarily difficult. It needs to be.

To acknowledge that a child’s prospects are so dire, so limited, that we will not or cannot provide artificial nutrition is self selecting for the rarity of the situations in which parents and care teams would ever consider it.

Loving a child on the fringe  will no longer be an option in an IPAB world (H/t: Pundette). The choice to love a baby whose life will be deemed too costly for living won’t be ours alone to make. The Peter Singers of the world will reign.

Scary thought, isn’t it?

Back to cleaning and cooking for me, avoiding the news and politics and all. This real-world stuff is for the birds.

7 Responses

  1. this article made me so sick when I read it. everyday people are turning themselves into monsters, for want of the fortitude to deal with tragedy. thereby compounding the tragedy exponentially, and also killing their own souls.

    glad to see you. I’m way too busy with the fam to post as much, too. they sure are more fun than current events.

    cheers.
    Lin

    • @Lin–true on the tragedy. But most would prefer to watch the faux dramas of reality tv unfold and cry crocodile tears than experience real tragedy. What’s the word? Catharsis. At least the ancient Greeks wrote giant dramas compared to our puny versions.

      agreed on busying myself with extra family stuff. That baby isn’t sleeping as well also helps keep me away. And I’m ok with that ; ) So we’re eating well. Crafting more. And currently working through piles in the basement! Anything, it seems, to remain in denial! ; )

  2. […] Political Junkie Mom has an article on the Liverpool Care Pathway for struggling newborns. […]

  3. Reblogged this on Two Heads are Better Than One and commented:
    Want to know what Obamacare will look like? It’s gonna look like THIS…

  4. Thanks for sharing Loving the Child on the Fringe! Important issues I had never been aware of!

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