Advance Care Plan, Human Rights & I want what I want

Most of us take our human rights for granted – that is, those who I imagine might read this; where and how to live, who to love and so on.

In the past I have written about advance care planning – this is figuring-out what you want to have happen to you in the future.

There is a tremendous amount of work taking place across the NHS examining ways to ensure that people plan ahead, for we know, when people are involved with choices about their care and treatment, the outcomes are better;

If you want a knee replacement, are motivated to have the surgery and have an orthopaedic surgeon who does a good job (without infection, DVT or other technical fault), the outcome is likely to be good. You are likely to have a second lease of life, free from pain, with increased independence and quality of life.

If someone orders a test or a treatment that you don’t want or do not even understand, the outcomes can be bad; people are generally able to accept the unpleasant side of medicine if they see the bigger picture, if they can conceptualise their temporary pain or suffering as part of a bigger goal – a cure or, improved symptoms.

When people are treated like objects, left out of the discussion, when the NHS engages with folk as if in a continual state of emergency (few of us are upset if a surgeon saves our lives when we arrive unconscious after a road traffic accident – these are times when preferences play second-fiddle to necessity), but, most situations are not like this, most of the time, a little bit of sensitivity, kindness, empathy and compassion can slow-down the interaction and afford a person a moment to reflect, ask questions so as to get their head around the issue.

Advance care plans fit within this schema.

There are some things I would or would not like.

I don’t think I would appreciate being kept alive on a ventilator indefinitely as happens in some countries, if I experience a massive stroke; for example.

Part of the problem is, none of us particularly enjoy imagining ourselves in horrible situations – like the Freudian concept of death. It isn’t a nice place to go. Even when we do talk of death, for example, in relation to life assurance – we tend (or at least I) tend to focus on the up-side – the cash my family or favourite charity might get in the event of my untimely demise.

As age and chronic disease encroach, as we encounter limitations in our abilities to engage with life, perhaps combined with a good innings – it is perhaps easier to consider what we would have or have not. We might not want to live in a care home, we might not want a PEG tube, chemotherapy, surgery, hospitalisation. Again – none of this is straightforward or easy to get your head around – it isn’t the way evolution designed us.

And what of the advance care plans that we construct for our husbands and wives, mothers or fathers – the situations when those we love exist in states beyond which we would conceive are enjoyable, satisfying or fun.

Here is a sketch of a life I might not like:

Nursing home; 25-watt light bulb, air mattress, indoor existence, stifling air; closed window, bland, pureed food that is not of my choice, bed-bath, strip-wash, catheter, insomnia, anxiety, enema, depression, monotony, noise, itch that can’t be scratched, day after day after day…

A recent article in the New Scientist revealed that some people with locked-in syndrome; like Bauby in my last blog, those people whose lives are potentially consistent with the description above, who cannot move a muscle, who cannot even blink, through new techniques to interpret brain-waves, have revealed that they are happy – that their existences are far less unpleasant that we might envisage;

There is a theory (constructed by us able-bodied souls), that being in such a state of perpetual physical torment or incapacity has a psychological effect that induces euphoria. Where our standards slip as to what is good, what is fun.

No one knows.

And this is the problem with advance care plans made by those who are capacitated, free from dementia or infirmity, us, who plan for our relatives during this time, when they cannot express what they want; or even for those of us who have the foresight to create such a document ahead of time – who is to say that the state we perceive when able-bodied is as bad as it appears;

This is the human rights. I want what I want now and I want what I want when I want it and – I want to be able to change my mind as often as I like as my mind is mine, as is my body and no one can tell me what I like or dislike, or want, etc.

Can we ever have such a thing as an advance care plan that is consistent with this reality?

Surely our will to live will always be too strong; evolution hasn’t designed us to easily give-up on life.

Something to think about.