Saturday, 10 May 2014

Liverpool Care Pathway - The Fallibility Of Elegance

To ACPR or not to ACPR: that is the question...

Jane Ellison has responded to Mr Nicholas Brown at Question Time that permission is not required to slap a DNR on a patient’s file.

Likewise, the Scottish Government website concurs that the responsibility for decision making lies with the patient’s lead clinician 
Clinicians working across NHS Scotland are able to make decisions regarding the appropriateness of Cardiopulmonary Resuscitation (CPR), issuing a DNACPR instruction if considered clinically appropriate.
Studies demonstrate death to be a key focus of the day to day business of hospitals. And they are only half-way there.

This is a society geared to death.
A meeting had been arranged to discuss resuscitation. I will take TOIL and leave work early to attend as the doctors go home at five...
It is, again, a busy morning. The phone rings. It is someone calling from J***'s ward. The conversation is brief. J*** is being returned to the nursing home today. There is no further explanation. I will not have to take the TOIL after all.
It is five-thirty. I am ringing the nursing home to check J*** is safely back with them.
There is surprise. No, J*** is not there. No-one has contacted them to say he would be returned.
It is A***, the lady on reception. She recalls that this happened previously. They had expected J*** to be assessed and returned to the nursing home. They had waited all day and heard nothing. Finally, when they contacted the hospital, they were told that several attempts had been made to contact them to say they were keeping J*** in. A*** knows this not to be true because she was, herself, on reception all day. They did not ring.
Another lie...
This caused them some concern and consternation, A*** says. They have another resident also hospitalised and they felt it necessary to confirm she was safe. 
They had experienced similar problems tracking J*** down when he had been surreptitiously moved from B*** Ward, she adds.
A*** says she will ring me at seven to update me, one way or the other, if J*** has been returned or not.
The Bard discusses the “thousand natural shocks flesh is heir to” and demands of us: do we surrender unto death this mortal coil to explore t­­­­he undiscover'd country or continue to endure their savage taunts, their artless jeers?

Is death, indeed, that release or further burden for an immortal soul to bear? Is it a nobler cause to stand and fight Death’s summons or are we the lily-liver’d craven to not embrace the end? The Bard accuses us. He suggests it is our moral compass which charts us from that course.

“Thou lily-liver'd boy!”

The Bard’s prose is tinged with a Christian ethic. It is the pang of Christian conscience that causes us to prefer life’s rigours over that “consummation devoutly to be wish’d”. Even so, the prose has a universal appeal, to the religious and the areligious alike.

To be or not to be: does the persona survive or cease to be? If not; if all there is is just a triumphant accident then, whatever lies beyond - or does not - this life, this time, should matter more to us, not less.

‘Not to be’ implies we cease to be; it is the end, there is no more beyond the gaping gate of death. Is this an areligious notion from the Bard?

In contemplating and seeking to define these issues, we open up a sea of perils. There are those – they are mentioned in these pages – who, in seeking to define the point of death for medical purposes, do define a person as a non-person or without personhood. These are dangerous people.

At every twist and turn upon this path we tread, there is further peril.

A DNR also provides a moral dilemma. A passive decision to not intervene to save a life is tantamount, morally, to an active decision to take a life.

DNR, also, is an "active killing" which the law permits.

But resuscitation is not now to be discussed. J*** is to be returned to his nursing home...
It is seven. I am told he’s not back yet. J*** has not been returned. 
A*** quips: “It’s early yet; let’s wait and see.”
Impatience and concern impel me. I ring the ward. 
Yes, J*** is here. The gentleman who answers cannot say what is happening and fetches the staff nurse. Yes, J*** is being returned.
I ask if J*** is over the infection. It is not a definitive response...
“They wouldn’t say it was alright for him to go back if he wasn’t.”
Her response counters my request for information rather than responds to and informs it. Are they trained to speak that way to plead plausible deniability?
How did J*** get the infection?
“Which infection...?”
Another negating response. Is she one of the ‘experienced members of the healthcare team’ who conducts those ‘sensitive and complex’ conversations’?
The vomiting...
The diarrhoea and vomiting... Infections are picked up in hospitals.
You said, “Which infection...?” The chest infection... That was what he came in with, wasn’t it? I have lost the initiative. No...
She pauses. “Well, that’s all cleared up.”
A clatter calls her attention. She instructs someone in some regard. She is busy. I am taking up her time, distracting her from her numerous tasks. The conversation concludes.
J*** returns to the nursing home, finally, at 11pm. 
Our top priority was, is and always will be resuscitation, resuscitation, resuscitation... 
And more tools for Wee Bee Long to add to her armoury...

This is University of Sheffield News –
An Institute founded one year ago at the University of Sheffield is showcasing today (8 May 2014) the first phase of technology that will lead to the creation of a virtual human body and revolutionise global healthcare. The Virtual Physiological Human (VPH) programme is backed by European Commission funding. Since 2007, approaching €220 million of EC funding has been targeted at collaborative in silico projects across Europe.
"What we’re working on here will be vital to the future of healthcare," said Dr Keith McCormack, who leads business development at the Institute. "Pressures are mounting on health and treatment resources worldwide. Candidly, without in silico medicine, organisations like the NHS will be unable to cope with demand.
The Insigneo Institute for in silico Medicine is a collaborative initiative between the University of Sheffield and Sheffield Teaching Hospitals NHS Foundation Trust.
As a teaching hospital, clinical trials may proceed there. According to Dr. McCormack, “If we don’t invest in these kind of computer simulated projects there will come a point that the NHS simply can’t cope and that point is not as far off as we might like to think.”

“If you are building a bridge you test it using a computer model. If you’re designing a new car, you put it through its virtual paces. In fact the only thing that doesn’t use this kind of modelling is medicine, at least not until now. It’s madness when you think about it.

The big difference, of course, is that people are people. This tool will be used to assist the NHS to cope with what the End of Life Baseline Report called a "tsunami of need". Is this a 21st century scientific breakthrough or a Pandora's box that will usher in a Brave New World. How will it be used?

This tool is reliant upon data modelling. Data is a useful basis to construct future projections. When the variables multiply however, so does inaccuracy creep in. An organism is not a machine. 

The subject areas of research earmarked for the next five years are:
  • The Digital Patient
  • In silico trials and
  • Personalised Health Forecasting
Wow! Personalised Health Forecasting... This is great news. So many tools coming on tap. But...

Like so many tools of the modern world, it may be a force for good, or it may not.

The internet may be a force for good and advance the cause of democracy. This is why it is feared by dictatorial regimes like the Peoples' Republic of China and the Islamic Republic of Iran. It is also a source of great evil in the sexploitation of vulnerable women and children. And we may see where their priorities lie when Internet Service Providers block file-sharing sites but permit these sites to flourish and politicians and celebrities cover up wrongdoing.

May every aspect of our world, even ourselves, be reduced to a mathematical, a scientific algorithm? Science is a heap of abandoned hypotheses. The political scientists of the 19th century derived a historical determinism which culminated in the 20th century human disasters wrought by such social architects as Lenin and his successors and Mao tse Tung through his Great Leap Forward.

Such tools may be used to deny care and treatment. Such tools may create a second class citizenry. Such tools, at once, dangle promise and threat before us. Data modelling is a guide; it must not be used as the rule. Data modelling, however elegant, indicates the trend, the epitome, not particular outcomes.

It must not be, but will it be the tool that filters out the one percent to downsize and deny care and treatment; the carousel that conveys us into oblivion? The philosophy of the herd must not win.

Further reading -
Liverpool Care Pathway - Appointment With Death  
Liverpool Care Pathway - Redefining Death 
Liverpool Care Pathway - Persons, Personhood And Non-persons 
Liverpool Care Pathway – The Court Has So Decided... 
Liverpool Care Pathway - The Cost Of Living 
Liverpool Care Pathway - Changing Minds 
Liverpool Care Pathway - Downsizing

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