“Too often, patients die alone, in pain, and hooked up to machines”

“I can’t find in my mind clear spaces to put people” Grandpa April 2007

If Illich is right and "Most learning is not the result of instruction. It is rather the result of unhampered participation in a meaningful setting." then what is “most living”?

This Easter sees me watching Grandpa die.  I am watching him die in an institution charged with helping him live.  I am watching him die in a hospital. 

We talk in education about integrating technologies to help people learn - from my observations in the past 48 hours, our use of technology in helping people to learn has nothing on the medical technologies that have been designed to monitor and intervene in helping people to live.

What is happening to Grandpa is making me think about Illich’s notion of the "life-long patient".

The medicalization of early diagnosis not only hampers and discourages preventative health-care but it also trains the patient-to-be to function in the meantime as an acolyte to his doctor. He learns to depend on the physician in sickness and in health.  He turns into a life-long patient.  (Ivan Illich)

I am struggling with questions about when and how do we stop treatment of dying patients.  I am imagining Grandpa being allowed to live his life as the result of “unhampered participation in a meaningful setting” and how important this would be to him if his voice was understood and  respected.

And in examining the tyranny in being a lifelong patient when you cannot express your own needs,  I am facing up to my responsibilities to Grandpa.

I have always known that our current use of the term “Life-long learner” to justify the extended cradle to grave institutionalisation of learning betrays a faithful interpretation of Illich’s term.

Our ab/use of Illich’s term “life-long learner” is comprehensive – you cannot go onto a school website in NZ,  read an MoE document, receive an invitation to join a new e-learning community without finding the promise that the institutional initiative will change the 21st Century student into a “life-long learner”.

And although schools are still to realise it - researchers long ago exposed our current use of the term as a cover up for social control - check out Breaking the Consensus: Lifelong Learning as Social Control  Frank Coffield British Educational Research Journal, Vol. 25, No. 4, Post-Compulsory Education (Sep., 1999), pp. 479-499

The irony in "lifelong learning" is of course that the individuals that these institutions refer to are lifelong learners before they arrive – and the institutionalisation of learning – our “good intentions” - our institutionalised interventions - mean that these same  individuals are highly unlikely to be” lifelong learners” when they leave.

Check out the New York Magazine article about how the institution of school so easily undermines life-long learning – How not to talk to your kids is the most popular read in our New Zealand cluster schools staffrooms this month.

Update on Grandpa:

“What do I count as the greatest success in my life? … Why being there to look at it of course.”  

To the bewilderment of all Grandpa is rallying – he is demanding whiskey at 8.30am, proposing dodgy  liaisons with his nurses and when helped into the vertical - attempting reckless dancing in his zimmer frame. “I’ve never had any ambition to be 100,” he proclaims loudly to anyone passing “but I do now.” The adult children, persuaded by his decline to return home from all across the globe, are torn between equal measures of delight and frustration at his miracle revival. 

“Who is this?” he asks before learning forward and whispering in their ear … “She won’t buy me one now” … “it will boost my expectations.”  Sucked back to times of earlier sibling rivalries the new adult-child rushes off to search the city for a roast beef and pickled onion sandwich for Grandpa . The dementia nurses are not immune to his mind games, they call him “the two faced kipper” after discovering by chance that he has told each in turn that they are the only one who can cook kippers like his mum used to.  Grandpa the master of manipulation is back in control.