Tuesday, 21 January 2014

We must find a way to make assisted dying legal

Assisted dying must be made legal in the UK. It is vital that people have decision making power over their own lives, and ends, and that the suffering so many people wish to avoid is prevented.

As a libertarian, I have a number of beliefs about the individual's right to choose for themselves, but here I am writing from a deeply personal perspective, in reference to two of my own experiences.

The end of life

I nursed my Great Grandma to her death from metastatic cancer a few years ago. She had the very best of care - you could not expect more for any money. At home, with equipment provided including a hospital bed (making moving her around much easier), an excellent community care team led by specialist hospice nurses calling every day, and district nurses, GPs and paramedics all available 24/7 (all were required variously). There was an excellent system in place whereby all of her needs as she deteriorated were anticipated - equipment and pre-prescribed medications were kept at our house, so that any visiting medical professional could treat her without having to source these. Calling a paramedic out at 2am to reinsert a catheter was made much easier by having one on hand!

However, though end of life care can be done excellently (and I wish all families had the experience of ours), it doesn't take away the suffering. Dia-morphine does not take away the suffering. Sedation does not take away the suffering.

For the last few weeks of her life my Grandma largely lost the ability to communicate, but continued to have occasional heartbreaking lucid moments right to the end, where she wished to die (though I must emphasise in her case, her religious beliefs meant she did not want intervention to help her to die). She did not eat or drink and became skeletal. Her organs were shutting down. Her skin was breaking down, and nothing could stop the sores. It wasn't nice. Yes, she had the best care, and the best medication, but it didn't stop her hurting or knowing what was happening. She wanted to be peaceful, but we had to move her so very frequently to clean up messes as her organs shut down. For her, despite the vast quantities of dia-morphine, it was traumatic.

As I stated, she did not want intervention to help her die.

But me? I would. Absolutely. With certainty. Once it was end-days, the hope had gone, and the suffering outweighed what comfort I had got from my loved ones, I'd want to be off. I believe I should have to right to make that choice, and I believe it's right for people to help. What exactly would be achieved by preventing someone who is going to die and who has nothing but suffering ahead of them from making a choice to die sooner?

I am terrified that one day I will be in that situation, and no one will help me. Or worse, that my family will help me but risk prosecution. It is wrong that what could be a peaceful death, cutting out a big chunk of awful, is prevented by the law. 

Gathered in the kitchen the morning after she died, four members of the community care team who had been so excellent were gathering up leftover medication and equipment. "It's awful isn't it", they said "I wish we could help people along sooner".

They'd said the thing we'd all been thinking for weeks, but had been too scared to say out loud.

Living with pain

I'm no stranger to pain. I have Crohn's disease: a type of inflammatory bowel disease that affects any part of the digestive system. It can cause some pretty serious pain. I've had stays in hospital where ridiculous amounts of morphine have done nothing for me. Triple doses and I'm still climbing the walls.

And so I think, what if that were it? What if Azathioprine, my current treatment, or other medications for Crohn's disease had not been invented? What if, with absolute certainty, that pain was all I was ever going to have? Where the only way to actually stop it hurting would be to sedate me. What if something else happened to me that made that the case?

What then?

It's so very easy for people to say life is precious and that we must preserve it. But sometimes it isn't. Sometimes it's ending, and that ending is hell on earth. The person who has the right to decide whether their life is still or not, is the individual.

Protecting vulnerable people

I understand that people have concerns about vulnerable people being coerced into an assisted death. Or that assisted dying would lead to worse palliative care arrangements. Or indeed, that if palliative care were better, people would not wish for assisted dying because death would be smooth.

I strongly believe that these legitimate concerns can be worked around. We already have advance statements which allow an individual to make decisions about their care in the future. You can decide whether you want to continue all medications or cut back just to painkillers and sedation. You can choose whether to be artificially fed and hydrated, or not. You can make advanced decisions about things like resuscitation, or if you'd be taken to hospital in the event of an injury (for instance, if cared for at home, you can choose to just be put back in bed should you break a hip).

This kind of decision making process could, and should, be extended to allow people to choose assisted dying. The law must be changed to respect the rights of the individual, and this means protecting them from coercion whilst allowing them to make their choice.

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