When is death not a taboo? When it’s on Gogglebox

Writing in the Guardian last month, Dr Seamus O’Mahony said ‘in our atomised societies, death has replaced sex as the new taboo’. He lamented society for losing the knowledge of how to ‘tame’ death and in his new book hypothesises that ‘evangelical atheism’ has left us ‘unsure of how to behave when faced with the great events of our lives’.

When reading this I could not help but think of the CEO of a hospice who felt the only way to express their views on assisted dying was to do so anonymously.

There is a worrying contradiction in the public being scolded for their apparent failure to speak frankly about death, when professionals working at the heart of end-of-life care feel unable to have an honest discussion about what choice at the end of life should look like.

Dr O’Mahony dismissed demand for assisted dying as an ‘obsession for personal autonomy and control’. He concluded that attempts to control how we die, including via ‘advance directives’, a legal tool widely recognised as key to improving end-of-life care in this country, are nothing more than ‘a distraction’.

These extreme views are relics of paternalism. Recording treatment wishes and having the choice of an assisted death are logical expansions of person-centred care. In an increasing number of jurisdictions around the world they are just two of the many end-of-life choices people have available to them, ones that offer immeasurable comfort and reassurance, not only to dying people but to populations as a whole.

There is nothing wrong with our desire to exercise control over our deaths. Seeking control is a natural instinct throughout life. It is irrational to say that we should suddenly abandon this urge in our final weeks and months. Yes, we are unable to control everything and expectations must be managed, but that does not mean we must forgo any attempts of control.

Dr O’Mahony diagnoses the desire to control death as, to paraphrase, a problem born out of a consumerist, secular malaise. He appears to think death is too complex and too unpredictable for the majority of people to understand – only doctors know what death is and only they can decide how it should be dealt with.

Unfortunately, his views are common amongst those who represent palliative care professionals.

Over thirteen thousand people called on Professor Rob George, President of the Association for Palliative Medicine (APM), to retract comments he made about assisted dying ‘muscling in’ on the recent meeting of the British Medical Association (BMA). Most people would consider it entirely reasonable, given the overwhelming public support for a change in the law, that assisted dying was on the BMA’s agenda (disappointingly, the BMA voted to remain opposed to assisted dying).

Last year the National Council of Palliative Care (NCPC), Chaired by prominent assisted dying opponent Baroness Ilora Finlay, issued a joint statement with the APM arguing that when MPs debate assisted dying, they should not consider it to be compatible with palliative care services. In an undignified attempt to add extra weight to this view the statement proclaimed that the voices of those working within end-of-life care ‘must be given particular weight’.

When discussing end-of-life choices, surely ‘weight’ must be given to the views and experiences of dying people? Yet for some reason, the public cannot be trusted with this issue.

Palliative care professionals carry out some of the most valuable and difficult work in healthcare, and nobody would disagree with calls for more and better palliative care that is accessible to all. But that does not mean we can ignore the warning signs about how the sector is responding to public concerns around dying.

The reality is that the public have been underestimated. Last month the Dying Matters coalition revealed that two thirds of the country feel comfortable talking about dying with family and friends. Collective outpourings of social media grief for departed famous figures have become the norm. A recent episode of Gogglebox featured the moving clip of a man and his wife discussing whether or not he would like to be resuscitated should treatment intended to improve his quality of life be unsuccessful. This prompted people up and down the country to talk to each other about what they would do if faced with such a difficult decision.

Death is not a taboo, it is all around us – on our televisions and twitter feeds.

The theory that death has replaced sex as the number one issue we do not want to talk about can therefore be challenged, yet the claim does throw up some interesting parallels. Public discourse on sex has historically been controlled by institutions seeking to mitigate what they perceive as the threat of free and open discussion. By telling the public something is taboo, you can then set the rules for how that taboo is broken.

Similarly, the representatives for palliative care want the public to talk about death, but are then selective in what aspects of the conversation they are prepared to listen to.

The end result is that Dr O’Mahony, the NCPC and the APM cannot put forward any solutions to address what is happening in the absence of an assisted law. Dying people are taking matters into their own hands, either by travelling abroad to die or ending their own lives behind closed doors, and many more are suffering against their wishes in their final days, even when in receipt of high quality palliative care. Philosophising about the complexity of death or refusing to engage with the public’s concerns does not make this cruel and dangerous situation go away.

People should be free to discuss death and dying in any way they want, those working within end-of-life care need to listen and respond, not with their personal views but with their professional expertise. Doctors have no right to prescribe what choices are acceptable and what choices are not; society must have the freedom to decide this for itself.