Opinion

End-of-life care is vital. Why is it so neglected?

Britain’s palliative care services depend for funding on the charity of the public – that is a national travesty

Imagine if the quality of your local maternity services depended on how much money had been raised by cake sales and marathons. We would regard this as an intolerable state of affairs. Then why, as Marie Curie’s softly spoken chief executive, Matthew Reed, puts it to me, do we accept this funding model for the care we receive at the very end of our lives? What sort of society allows a patient to take their last breath in a lift as they are rushed from A&E to a ward, “treated like a FedEx parcel as they as die because bed pressures are so great,” as palliative care doctor Rachel Clarke put it to me?

Thousands do benefit from love, support and comfort in their final chapter: I watched my dad slip away without pain as Bob Dylan and Bruce Springsteen tracks played in a warm Marie Curie hospice, surrounded by doting nurses and his family. Not so for James Swinburne: “My partner’s grandmother had oesophageal cancer and was essentially dumped in a medical ward, full sick bowls left around all day, half-eaten meals that we saw in the morning still there in the evening.” She developed a bed sore, and a hospice place was only found when they threatened to go to the press.

Britain’s end-of-life and palliative care services are a national travesty. That a public debate on this crisis is so sorely lacking has much to do with our fear of confronting dying and death. But death is a universal human experience; and, glib as it may sound, we will only die once. It should be a basic human right to die with comfort: and yet, according to Hospice UK, of the half a million who die each year, 100,000 are not given the vital care they need. With the government providing just a third of English hospices’ funding – in Wales it is scarcely over a quarter – these crucial services depend on the goodwill and charity of the public. No other component of our health services is funded like this. There are gross inequalities, too: ethnic minority communities in particular struggle to get the care they need; and the poorest patients terminally ill with cancer are nearly a fifth more likely to die in hospital.

It is a funding model that has left over eight out of 10 charitable hospices in the red in the coming financial year; and Boris Johnson’s much-vaunted £25m cash injection for hospices and palliative care services is not new money, but raided from existing budgets. Britain has a shortage of 3,500 palliative nurses, a figure predicted to double by the end of the decade, and according to a survey by Marie Curie and Nursing Standard, two-thirds of nurses identify staffing shortages as the main barrier to providing care to dying patients. And while £500m is spent each year on cancer research, a derisory £5.49m goes towards end-of-life care research.Things are only going to get worse: after all, there are now 1.6 million people aged over 85, a figure expected to double in the next 25 years. “We’re all living with far more complexity at the end of life,” explains Reed, “and the whole system is not geared up for trying to serve that at the moment.”

When palliative medicine works, it has a transformative impact. Dr Rachel Clarke – who has just published an acclaimed memoir, Dear Life – abounds with enthusiasm about her job. The easy part, she explains, is often managing symptoms with very good drugs. “The real profound thing you’re left with is: how can you help this person, maybe in their last days or weeks, what matters to them, how they spend their final moments on Earth.” That’s where imaginative ideas come in: bringing in pets, fresh fruit smoothies, a jacuzzi with a super-expensive bath bomb. It is an experience denied to thousands who are dying as you read these words.

As inspirationally tireless as hospice fundraisers are, these are services that desperately need sustainable central funding. This means addressing the social care crisis too, which has inevitable knock-on effects on palliative and end-of-life services. But the prime minister’s call for a cross-party solution risks becoming more can-kicking. The emphasis must be on providing community-based services – like the gold standard of care my father was lucky to receive from Marie Curie – and getting terminally ill patients out of hospitals. Hospitals are designed to make people better, not to provide comfort to the dying: and it is expensive distraction from their real function.

A sad truth too is that our medical professionals are not properly equipped to deal with dying. “It is a catastrophic failure in medical training to not deliver a proper end-of-life education,” explains the Association for Palliative Medicine’s Dr Amy Proffitt. Newly trained junior doctors who’ve never had to deal with death find themselves having to comfort the newly bereaved. Surely this must become a core element in the training of our future nurses and doctors. And while the modern hospice movement emerged primarily from cancer treatment, this is not the biggest problem facing our ageing society: we need properly funded services for chronic heart failure, dementia and frailty.

While funding and resources are essential, our attitude to death has to change, too. As Reed points out, most people experience grief even before their loved one has died: the psychological support needs to be there for both patients and their nearest. There should be statutory bereavement leave: forcing the grieving to work in the immediate aftermath of loss should surely be regarded as cruelty. But a precondition to such changes is a society more open about discussing our last moments without consigning it to a box labelled “too morbid to discuss in any circumstances”. If the test of a civilised society is how we treat our most vulnerable, and the promise of our NHS is to provide state-of-the-art care from cradle to grave, then we are failing. We should all expect to be able to die with comfort, dignity and love. Our society does not lack the wealth to realise this aspiration, but the willpower.

• Owen Jones is a Guardian columnist