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June 3, 2011

When is Treatment Not the Cure?

by Prue Miller

We’re hard wired to live, so we don’t want to talk about…well…the other thing.

I hate talking about breast cancer.  I hate talking about teenage suicide. I hate talking about nuclear war and anthrax. I have a primal fear that if I talk about it, it will happen in sort of a macabre twist on the film line “If we build it, they will come.”

And since working in the maze of aged care I have new fears, perhaps more realistic fears. What if I get dementia?  and then diabetes, and then cancer and then a broken hip? Because the longer I live, the more likely it is that I will attract all sorts of medical issues – like some kind of sick magnet.

No matter what the cost – to our finances, to the system, to each other, mostly we are kept going, even if we don’t want to go there.

There will one day have to be a point at which we as a society are going to have to work out, and accept, that exhausting all medical avenues available is not the best remedy for every person.

It has become accepted for people admitted to any sort of medical facility to be asked to consider signing a NFR order – Not For Resuscitation, take no heroic measures to extend the life of the patient, or resident, should they go into cardiac arrest. It’s not a matter of refusing to save a life, because when it comes to people already suffering the ravages of disease, that ‘life’ has already been lost. Yet when we look at resisting other interventions, we go weak at the knees.

The pressure to keep looking for a miracle, not necessarily a miracle cure (because we know that they doesn’t exist) but an honest to god miracle that will make extending a life worthwhile is almost irresistible. We say Do the dialysis, Do the central line, Do the GI tube, Do the stent, Do the spinal tap, Do more bloods … Do whatever you can to take away the possibility of death visiting my home.

Eventually, as the ageing population explodes there will be more and more dear souls intertwined in the system that will, let’s be honest, be unable to bear the financial burden of this endless list of possible treatments. There will come a time when we will more openly have to find and accept a life balance, unlike any we have done before. And of course there is a chance that as families, the choice will not be entirely ours. It’s not euthanasia. It is deciding when to let go.

Currently in the United States debate rages about how the nation can possibly afford their version of Medicare – they are searching for ways of slashing the budget which has opened the way for serious debate about when is enough, not simply enough, but simply futile. For them this scenario of what is fiscally possible is already happening. In the New York Times today there is further debate – one geriatrician has suggested that the solution includes not doing CPR, dialysis or other aggressive therapies when patients have no chance for cure or recovering function. Dr Cheryl Woodson, a  is quoted as saying “When we insist on assaulting people with futile technology, we not only fail to prolong their lives; we actually prolong their dying. Hospice is a wonderful alternative to this assault; it allows us to keep people comfortable and love them …to death.”

Another contributor to the debate suggests that joint replacements for dementia sufferers are also a waste of time – as compliance, a clear understanding of how to live with and accommodate a new way of moving, is almost impossible to achieve and almost places patients in greater peril.

Not too surprisingly, a point I raised in my book “Looking After Your Ageing Parents” has also appeared here. What is the point of testing for diseases such as cancer, if when the diagnosis is confirmed the patient has no intention of committing to treatment anyway? Why put up with invasive and painful investigative procedures, if the result has no bearing on the outcome?

This is all so easy to talk about when someone we love is not lying in an ICU bed, facing a short term future. It is easy to take the coward’s way out. But it is our awfully painful duty as a loved one to do our best to be both compassionate and tough, all at the same time.

I see lost souls shuffling down corridors, pulling at locked doors, searching for their long lost mothers, grasping at thin air for things only visible to their hallucinating minds, watch them cry with confusion (and I think loss for what they once were, a distant shadowy figure) and I wonder, what if it were me?

As the elders of our society’s health degenerates, and it will, the system will almost force them and their families into the system that insists on trying everything, while saving very little. I hope, I truly hope, that those who love me will not allow me to step onto that moving pathway to hell. That by then there will be more hospices, or services for home care, that will allow me to slip away with speed  and dignity with my loved ones around me, making cups of tea and putting the washing on, with a dog on my lap, and TV on in the background. Home.

It is almost the epitome of ageing unwisely – medical experts would see it as ‘giving’ up, being irresponsible, – but perhaps leaving people alone is a perfect example of the code “First, Do No Harm”?

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