I want to choose how I’m cared for when I get old

None of us know what our health will bring in the future. A Living Will can help ensure that we get the care we want no matter what happens to us.

I have been thinking about death this week. In fact most of my close personal friends have been thinking about it too. It's not the Right to Die debate, it's that today we're burying the second of us to die before they reached 65.

I am reflecting that, if there are say ten or 12 people I would consider close male friends I've known since school or my early 20s, two haven't made retirement age. I'm sure you can therefore guess the social class of my friends...

There is an awful lot in this we're 'unpacking' in our own way (me and my friends don't use words like 'unpacking'). Some of us have been taking more exercise and prioritising health since our 50s approached, some are perhaps not in the best mental health we've ever been in, some are wondering 'what next?' in our lives.

But we all feel ourselves getting older, and it makes you see things differently. I've known I should sort out a formal will for a while now, and it has always seemed like 'not urgent'. I now think of my contributions to Scottish society not as opportunities or possibilities but deadlines. And I wonder how it will all go from here.

I'm telling you this because, while we've not been talking about the right to die, I've been thinking about it. While I understand the sincere fears and doubts many have, I have always been a strong believer in the right to die. But there is an aspect to this which is about more than dying, its about controlling and managing how we are treated as we get older. What I want to write about is the 'Living Will'.

As I pointed out a couple of weeks ago, I'm very liberal. I absolutely support your belief that life is precious and shouldn't be shortened under any circumstances. I would fight in the streets to defend that right and your right to choose that for yourself. In the last couple of years I've spent time with two Common Weal supporters who became correspondents of mine who had terminal illnesses.

Both had cancer, and both wanted every remaining minute, even in their suffering. (Well, perhaps not right at the very, very end, but I don't know). At the same time I know someone who was paraplegic and in pain after an accident in her early 20s. She starved herself to death and no-one thought this was anything other than intentional. She had no choice.

When I was still at university a friend of mine had just started an office job in Glasgow. We'd been at the pictures and she asked me if, later in the week, I would go with her to visit her grandpa who was in hospital. He was in the late stages of lung cancer and it was an upsetting experience. There was no quality of life. I remember thinking 'I never want that'.

So I really, genuinely respect the different views on this and, even more so, I respect people's personal choices – and the idea of a coerced death in the NHS is dreadful. I am also aware that I've watched people's views change as they got older. I've seen people increasingly losing cognition, less and less able to make decisions for themselves.

We can talk forever about what ought to be better in the NHS – and palliative care is one of those things. But for me this is not a debate which is about finding reasons to reject other people's choices. Yes, better palliative care, but not at the expense of someone's choice to not suffer, just like yes better adoption services or support for young mothers, but not at the expense of their right to choose not to carry a pregnancy to term.

When we were doing our policy work on the health service, we had a whole session with our health group on old age care and what it means for the health service. We all slightly tentatively danced around the right to die question – and then we didn't. It turned out that all the medics on the group absolutely supported this.

But that's not what we talked about, because it is not just a question of 'to live or to die', it's a question of what we want towards the end. There are so many ways that we can lose the capacity to make the best decisions we can, especially on big issues. Of course dementia, but also difficulty with speech or writing, or because someone is panicking and confused when a decision has to be made.

And let's not mess about here – the decision we would make when in immediate pain and the decision we would make for ourselves if we knew that pain was coming but didn't feel it can be very different. I once had root canal tooth pain and I swear if the dentist had only offered me the option of 'having my mouth removed', after a night of agony and no sleep and now staring into the bright light, I think I'd have said 'do that then'.

“Once the concept was explained to me I realised it isn’t just about end of life at all, it is about helping medics care for you the way you want to be cared for”

Of course then you realise that it's not just when we get old. In my 20s a guy fell asleep at the wheel and came over a blind hill on my side of the road. It took an hour and a half to cut me out the car, six hours in surgery and three days in intensive care. I was conscious throughout (not the operation, obviously) but was doped up to hell.

Looking back, only by then time I was moved to a normal ward would I have said I was fit to make a complex decision. Had I been unconscious I couldn't have made any decision at all.

A Living Will is a document you sign which sets out how you want to be cared for by the NHS (and potentially by a National Care Service) in the event that your decision-making is temporarily or permanently impaired or your ability to communicate a decision is insufficient. For example, I have in my head now a sort of 'threshold of quality of life' below which I don't believe I would want to continue.

For me, states of dementia don't scare me half as much as bouts of lucidity in between. What good am I to my loved ones or the world if I don't know who I am any more? What do I gain? In my head somewhere is a 'threshold balance of lucidity'. On the other hand, I can manage OK with a fair degree of chronic pain (I think - I've had a deteriorating arthritic ankle since that accident and it has always ached with much walking and you just get used to it).

So my pain threshold might be different from yours but I might value the sharpness of my brain more than someone else. Then there all the things I don't really care about – I have no religion so I don't have any moral objections to any healthcare I can imagine getting in Scotland. But there are also the things I don't know about. What kinds of decisions might I be expected to make about my health at moments when I'm not in a best position to make that decision?

I don't know. I'm not a doctor. “Robin, we need to remove your X if you want a given outcome but that will mean that you'll suffer Y for the rest of your life.” I couldn't begin to guess the range of things that X or Y might entail.

So I'd love to talk to someone about all of this. I'd love a patient, understanding counsellor to sit down with me and explain some of the big decision I might need to make some day and give me some options about how I'd like to be treated in some extreme circumstances. I'd love to have a properly-informed document that would set this out for me. That's a Living Will.

But I also recognise that views change. Over your life you might find – or lose – religion and feel differently about a decision you made before. And let's be honest – if you've made 50 years old (I managed that two years ago) then you realise young people have all this health and they're really stupid about it and don't look after it at all.

I doubt my 21-year-old self would have an identical Living Will to the one I would make now. So we need to review and revise our Living Will throughout our lives. In an ideal world perhaps we would have an annual 'for no reason' check-in with a medically-informed counsellor just to make sure our health was good and to check if we needed to update our Living Will. Realistically, in Scotland let's call it 'every five years' and pretend we could pull that off without screwing it up.

I do not for a second believe that this will assuage all the concerns of those who worry about right to die, but I'd hope it might help. A trained counsellor would be specifically trained to focus on any signs whatsoever that someone with a severe disability was being coerced to agree to end their life. If they had created a Living Will earlier in their life which did not make that decision and then it was changed late in life, that could be a red flag.

But once the concept was explained to me I realised it isn't just about end of life at all, it is about helping medics care for you the way you want to be cared for. One of the medics on our group described once having to perform awful, painful, invasive healthcare on someone who had no more than weeks left. When the patient regained consciousness he asked the doctor 'why?'. He didn't want it. He had been ready.

But the medic had no choice, because there is no choice, because we have no choice. I think we should have a choice, but I think we should be protected in a way that makes clear it is our choice, not someone else's. A Living Will seems an excellent solution to me.