‘that’ machine

The Other has suggested a topic for a new post. It relates to the decisions many of us must make, sooner or later, about the care of an older relative or friend. Or sometimes someone who is not so old. It’s sadly a real part of life.

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Not so long ago, the years of a person’s life between 50 and 59 were referred to in some circles as ‘the decade’ of death. A stroke or a heart attack in one’s fifties was once a death sentence. Advances in medical technologies have changed that. Now one’s fifties could best be described as ‘time for a major service’.

Parts that might be used for a major service include stents, pacemakers, or joint replacements. Additives might include medications that control diabetes, blood pressure, bad cholesterol, thyroid function, or prevent blood clots. Emergency treatments can restart stopped hearts, re-join severed bits, or just keep topping up the engine oil we know as blood.

A range of tests can reveal misaligned tendons, tumours, misfiring heart chambers, leaky valves, torn muscles, or dodgy drainpipes.

And if more people than ever do need a major service it’s because advances in medical technologies make it more likely we will survive well into our 50s or longer.

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Many years ago I was passenger in an EH Holden on a long trip. The engine temperature light kept coming on so eventually my friend pulled over on the side of the highway, lifted the bonnet, pulled out the thermostat, chucked it over a fence into a paddock full of sheep, put the bonnet down, got back behind the wheel and then kept driving.

In many ways, our bodies now work much like a car. Some bits like the appendix no longer serve any real purpose, some bits like the gall bladder do serve a purpose but if we rip it out and chuck it over the fence life will go on, some parts need a new battery or a tune up occasionally and - if only car parts were the same - some body parts repair themselves or regenerate.

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By now you might be impressed with my wonderful car/body analogy, but wondering if I have a point. Just be ‘patient’, okay? [he he]

One of the most gob-smacking bits of news I’ve ever heard is that my grandmother had a radical hysterectomy in 1934. She must have been crook for anyone to consider doing it, but she lived for another 54 years so whoever it was did a good job.

This bit of news explained why she had scars 5 miles wide on her stomach that made her look a little like a hot cross bun. The wounds never healed properly and still tended to weep or get infected right up until the time she died.

Now we do astonishing stuff using keyhole surgery. One small hole for a camera and a light, one small hole for a thing to hold bits with, and one more for the cutter/stitcher. It might be the same day, or the next day, or the day after, but as a rule people are up and about and off back home in three or four days max.

Here is just a small sample of things The Other has noticed and dealt with for relos and friends in the past few years. [Then I’ll get to the point]

• E needed a hip replacement but was told she was too old. The Other took her to an expert she knew and he said a hip replacement was unnecessary – problem solved with a series of 3 ultra-sound guided autologous injections. [E will be 100 this year and is still one of the most intelligent, positive, widely read, humorous and fascinating woman I’ve ever met].
• H’s tummy didn’t sound like it was gurgling properly. Bowel cancer [big polyp] located and removed in day surgery.
• M’s toe developed a 2mm diameter black spot. That was gangrene. Off to see a vascular surgeon who unclogged the artery and gave The Other a jar full of plaque to keep in her bag of teaching tricks.
• As for moi, well, truth always sounds more improbable than fiction, so let’s just note I’m still here.

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Now for the point:

As people are living longer – and 70 has become the new 50 – the people we now call ‘aged’ are less able to make clear and informed decisions for themselves. Others – e.g. their aging children - are increasingly required to make medical decisions for them.

When talking about the prospect of getting old and sick, people often say “If anything happens, I don’t want to be kept alive artificially, tell them to turn off the machine”.

I felt guilty for 15 years because I did not know how to end what my step-father went through for the months before he died. There was no machine to turn off. It was hard to demand someone stop what was happening, because we were all struggling to identify what was happening or to foresee how long it could drag on. The very idea of a machine makes it all seem neat and easy.

ON.

OFF.

It keeps happening, or it neatly and instantly stops.

Unless someone is in a coma that hasn’t been deliberately induced by doctors, or unless they are undergoing regular dialysis, we have to ask “what machine?” Why can’t they just stop taking their medications, or stop having surgery?

Many of us are – sooner or later – kept alive artificially by some sort of medical intervention. It might just be a blood pressure tablet, or it might be day surgery to whip out something, but we rarely have the option of simply flicking a switch – or the luxury of knowing when it would be the right time to switch the machine off if there was one.

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When The Other’s Mother [T.O.M.] suddenly became quite crook less than two weeks ago, the choices her children had to face were these:

• ignore it and let her die [with some medication to reduce the agony]; or
• try and fix it, accepting there is a risk she will die during surgery, or that something else might go wrong.

Naturally T.O.M. was consulted before anything was done, but she was overwhelmed by the situation, felt like crap, and was a little intimidated by the need to bow to experts.

The Other, in her relaxed and jocular way, dramatically put her arms out, beseeching, and asked “Is Dad calling you to join him? Is he standing at the end of the bed calling June… Juuuuunnnne…?” T.O.M. laughed and told her not to be silly, so the surgeon then asked “Do you want to live?”. She said yes.

What a horrible thing to have to ask anyone. In the end, her children have medical power of attorney and could make the decision if they needed to, and had made a decision in case they needed to.

Some of the questions still haunting them include:

“Did we push her to give the answer we wanted?”

“Are we keeping her alive for us or for her?”

“How do we decide whether she does have any quality of life at the moment anyway? Is she happy? Do we have any right to evaluate her quality of life or try to guess how happy she is? Who are we to guess what her life might be worth?”

“Where is the line between providing the best care we can, and playing God?”

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At 91 it’s reasonable that T.O.M. is sometimes struggling with her short term memory. It’s also to be expected that at 91 if someone is a bit Captain Cook and misses a meal or two she’ll quickly become undernourished or have trouble sleeping.

Undernourishment, dehydration or the oxygen deprivation that results from poor sleep patterns can all cause confusion in the most lucid oldie. Additionally, it only takes one week of inactivity to lose the muscle strength, both internal and external, needed for healing. As a result, there is often only a very small window of opportunity – if any – for taking action. Surgeons can always ‘fix’ a problem’ but at some point it might be the wrong thing to do.

Nursing home/palliative care beds are sometimes occupied by elderly people who have not managed to recover an acceptable level of mobility after being ‘cured’. Others might physically recover after being cured, but remain confused.

When The Other and her siblings were discussing their mother’s options last week, The Other had a pretty clear idea of what was happening, what the outcomes might be and how critical the timing is. But I doubt this extra information reduced the burden of having to make a decision few people ever want to make. There is no way of preparing for this chore before the need arises.

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For millennia people have been born and then they have died. Historically, they were surrounded by extended family or clan members from start to finish.

For about the last fifty or sixty years people have been born, lived longer than they used to, then died at home, usually while their family continued getting on with life around them.

For the last 20 or so years people have been born, repaired, repaired, overhauled, mended and given a major service then lived until they are too old to make the “big” decisions for themselves. Now they are almost invariably not living with extended family or clan members when they most need to be.

Death is something that now seems to happen ‘away’ from us, and is becoming increasingly ‘sanitised’. Well, what I’m trying to say is that in some ways death no longer seems a normal part of life.

Because the world has changed so much and so recently, history, tradition, standard practice – there are none of these things to draw on as a guide for making decisions on behalf of older people today. When it comes to our new role of deciding the fate of our olds, I guess we are still just making it up as we go along.

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The good news is that the news about T.O.M. is good. Every day, her confused periods are getting shorter and her lucid periods are getting longer. She’s also getting out of bed and sitting up in a chair by herself before anyone comes to suggest she should, or might like some help with standing or moving around.

Thanks for all the good wishes.