The Blog

It's Time the Well Stop Telling the Dying How to Die

When my dad first asked us to bring him a Brompton cocktail after two months in the same bed at the specialist respiratory ward, we figured he'd finally lost the plot. Remembering a favourite drink, maybe; something from his youth; something his mother used to drink.

When he kept asking, I googled it: and I realised he was asking us to help him to die.

Never one to be left waiting, you can imagine this time lag made him pretty pissed off. But he forgave us, I think, eventually; after 8 weeks of uninterrupted bedside duty, we were all quite tired.

Today, the Assisted Dying Bill is back under the spotlight -- and Dan Hitchens, of the Spectator Blog, is one of many leading the anti-camp with this article. Hitchens might quote disability campaigner Baroness Campbell, who calls this 'a law for the strong at the expense of the weak' (and by so doing glibly ignoring the difference between The Disabled and The Dying, and the fact that one does not speak for the other); but this article, like so much of the rhetoric around this topic, smacks of the arrogance of The Well. Where are the voices of The Dying in this debate? Why don't they get more of a look in?

If you'd asked my father from his hospital bed -- weakened in body by every conceivable cancerous assault, but stronger in spirit than most men on their very worst day -- he'd have told you in no uncertain terms: give me the drugs and get me out of here. It would have been difficult for him of course; by that point his voice had already been taken away by the tracheostomy tube in his throat, propping his reluctant airways open, and writing was quite a strain.

But he would have written you a note, carefully, with his characteristic flourish; and it would have told you to go F***k yourself if you think you have the right to tell him how to die. And something far more lavishly rude besides. As too many young medics discovered, you really wouldn't have wanted to be on the receiving end of his indignant scrawls.

Because it's a trait of this sorry debate that never seems to change: The Well, speaking for The Dying; presuming to understand what it means to fail, organ by organ, piece by piece, incarcerated in a hospital and stripped, at the last hurdle, of the most basic aspect of human agency -- the choice to endure or not; the choice to halt your own degradation and do this last thing for yourself, this last time, on your terms.

The Assisted Dying bill is not for the isolated and the manipulated. It's for the human. It's for all of us. Because to ignore the need for the Assisted Dying bill is to ignore the reality of what many of us face as we move forward into the ever more complex realities of medically extended existence.

For those at the frontline of Life and Death -- Dr Atul Gawande, and Dr Peter Saul, and B J Miller's Zen Hospice movement -- have powerfully delivered their message in no uncertain terms: we do not need to know how to live longer. We need to know how to die better.

For those who have never experienced the slow, anatomised, piece by piece degradation that is dying in the 21st century from complex and long-term illness: it is not noble. It is not humane. It is not an abstract concept called Sanctity of Life to be debated about from the pulpit. It is a very real, all-too present reality -- and one which Dan Hitchens may himself think twice about in the years to come.

The truth is this: the knowledge of imminent relief is, for some, the only thing that will make their remaining days bearable. The certainty, that they will be able to go out in their own style, at their own pace, surrounded by family -- or alone, at peace with themselves; that they will not have to live in fear of another catastrophic bleed that erupts from their throat; or to drown in thin air as their lungs slowly fail; or to watch their family's distress as their heart stops. The assurance that they will not have their last moments punctuated by painful, intrusive, panic-stricken last measures. That they won't suffer. That they won't have to be afraid.

To prevent these things is not monstrous, or Eugenicist or Darwinian. It is human. It is kindness.

Most commentators on this subject, like The Guardian's James Mumford, seem to confuse allowing assisted dying with the dawn of a Darwinian medical system that ceases to care for its most vulnerable at their point of most desperate need; the green light for a long descent into a callous systematic incarnation of the hideous Liverpool Care Pathway; a cold, gradual dismantling of compassion, piece by piece, until extinction.

They are wrong. Assisted dying is not the antithesis of respect for life. It is the absolute embodiment of it, at the most important moment in a person's existence. It is what it means, truly, to deliver care from the Cradle to the Grave.

And the Assisted Dying Bill is not proposing this be entered into lightly, or vulnerable people, who cannot be judged to know their own mind, put at risk. But the go-ahead of two doctors and a Judge and your own sanity should be enough for any of us to choose to do anything with our own person. If we cannot choose our own fate, when we are autonomous adults, deemed to be in our right minds -- then what real freedom do we offer, in the end, as a society? What message do we send about infantilising the sick and elderly? For my dad, as for many others, it was a simple choice, articulated by our favourite national pessimist, Hamlet:

To be, or not to be -- that is the question:

Whether 'tis nobler in the mind to suffer

The slings and arrows of outrageous fortune

Or to take arms against a sea of troubles

And by opposing end them.

My dad wanted to take arms. He wanted to go out in style: a cocktail of barbiturates from a crystal champagne glass, with The Lark Ascending and his family around him. And let's be clear: he fought, nobly, for years, to live. He astounded doctors at every turn. He was the cat with nine lives. He suffered because he wanted to live more than he wanted to die. And that battle was worth it. His life was worth it.

So when, after two months in the hospital, disappearing piece by piece, and flat out of palatable options, he asked us to help him end it; when he wrote the same note to us, again and again, underscoring it on the page; it was our biggest regret that we had to deny him. It was heartbreaking to deny him. He deserved better than that.

But until we stop fetishising the idea of LIFE at all costs, and start considering what it means to have a good death, we will all be denied this. Because we are a culture that endemically, chronically, denies the dying process. We fetishise youth, we abandon our elderly. We keep the realities of ageing out of sight and out of mind.

Until we turn the tide on these things; until we put dying well in the picture; those who have the right to speak on this topic -- those who actually suffer, and the families that care for them -- will not get the voice they deserve.