My school friend was right: it's time to get real about dying

http://www.theguardian.com/commentisfree/2014/jan/10/dying-terminal-cancer-taboo

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Death, according to many, is the western world's last taboo. That was the opinion of my school friend Ali, who died two months ago and left his final words to be read out in essay format at his funeral, so that none of us could claim to have wondered what he thought about the whole ordeal. As is common at funerals for the young, the ceremony was packed. Friends and relatives converged upon the tiny crematorium in droves, lining the aisles, squeezing themselves on to windowsills and pressing themselves against doorways. A Cat Stevens song announced the arrival of the coffin and the attendees were requested to wear bright colours. Photographs of Ali's short life – many of them taken from Facebook – were projected in a slideshow on to a digital screen.

"If you get real about death, it gets easier to deal with," wrote Ali. "Not easy, but easier." This was a young man who had faced his terminal diagnosis with cancer head-on. He refused to shy away from acknowledging and discussing the two facts that most human beings grapple with their whole lives: first, that we all are going to die; and second, that after our deaths life for everybody else goes on.

The language surrounding illnesses that can become terminal is symptomatic of our refusal to talk about death properly. Why "tempt fate" with a discussion about palliative care when you're a "fighter" and you're going to "beat the hell" out of your illness anyway? If you're still doggedly subjecting yourself to another experimental therapy, then you're "battling on"; if you've started preparations for end-of-life care, then you're preparing to "lose your brave fight" or "finally give in" to an unconquerable enemy. There are few empowering cliches available for those who see their impending death as a natural part of their life, rather than a fierce tussle with the grim reaper. The warlike terminology that accompanies death and dying can be an inspiration for some – but it's needlessly demoralising for many others. Very few charities purporting to represent people with illnesses like cancer, heart and neurological disease will make mention of terminal patients in their campaigns, unless it's to quote "biggest killer" statistics. Discussions about uncomfortable things like hospices and grief counselling are left to those charities specifically dedicated to end-of-life care. No wonder many terminal patients feel alienated: if you're dying of heart failure then you're not really on Team Heart Disease anymore – you're just on Team Dying.

In fact, we as a society find these facts so difficult to deal with that we neglect to put in place policies that make perfect, inarguable sense. A report this week by the National Council for Palliative Care, in partnership with the Dying Matters Coalition and the National Bereavement Alliance, found that 87% of people agree all employers should have a compassionate employment policy, including paid bereavement leave and flexible working at the very least. Such a staggering amount of public support makes it all the more unbelievable that currently there is no legal entitlement to paid bereavement leave in the UK at all. Employees are usually allowed "reasonable" unpaid time to sort out funeral practicalities if needs be. After that, they are expected to get their noses firmly reacquainted with the grindstone or risk losing their jobs – even if their recently deceased loved one is their child.

In many ways, it is natural that most of us are not drawn towards campaigning for bereavement leave, improved palliative care or the right to die at home before we have experienced the death of a close friend or family member firsthand. But the prevailing presumption that it is somehow morbid to do so if you are young, currently healthy, or even ill but with a significant chance of survival can prevent us from making sensible choices. Most of us, when asked, have strong views about what sort of care we would like in an end-of-life situation. Additionally 92% have a firm idea of where they would like their money to go when they die. But, in both cases, we fail to put these ideas into action: a survey at the end of 2010 found that 30 million adults have no will at all, leading researchers to conclude that the UK is "suffering from will apathy". Meanwhile 57% of us firmly believe in only receiving "comfort care" – rather than life-extending medical interventions – in a terminal situation, but only 4% have set our wishes down on paper in an advance directive. Instead, just under half believe that their families can make those decisions for them if the situation arises – in fact, they can't.

Perhaps it's telling that one of the only regularly discussed issues surrounding death is organ donation, where the focus of the dialogue is shifted on to gifting a life rather than anything too macabre. Difficult conversations about the adequacy of pain relief in a person's final days may be a lot less glamorous than fist-pumping assertions that we're going to kick cancer's ass, but we do a huge disservice to people who die (so, everybody) if we shy away from having them.

We know for a fact there are things that made Ali's life easier in the months leading up to his death: medicinal cannabis, access to a dedicated teenage cancer unit where his family and girlfriend could stay with him indefinitely during the most harrowing cycles of chemotherapy, the support of friends and relatives who were willing to talk frankly and openly about dying. But for a large proportion of people, these comforts are out of reach. Many are left worrying that their loved ones will be unable to cope with the strain of grief. Many worry, alone, that the process of their deaths will be traumatic for themselves and those present. Discouraging people from voicing these anxieties is socially neglectful.

Upholding the final taboo makes our deaths, but more importantly our lives, so much harder. "Getting a terminal illness isn't fair, but life doesn't owe us fairness," Ali wrote in the final part of his goodbye speech. "Instead, I think we owe fairness to each other."

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