A better death: Help the Hospices

The NHS doesn't do death, or perhaps it just does it very badly. Like the rest of us, most doctors don't seem to want to think about death, much less discuss it, plan for it, and help to make it a positive experience rather than a terrible one.

That might sound like a contradiction, but it isn't. Death in a crowded hospital ward with preoccupied, overstretched staff who don't have the time or experience to discuss what is happening, where there is no privacy for friends and relatives, is hellish. A death in a hospice, where the person who is dying can be made comfortable by staff used to dealing with terminal illnesses, and can die with their friends and family around them, is a very different experience.

When my husband, Wyngate Harness, assistant editor of The Independent, was diagnosed with an inoperable malignant brain tumour in November 2006, the outlook for his grade and type of tumour was grim: the median survival time for someone with an astrocytoma grade 4 is just nine to 12 months.

Brain tumours are rare – they represent less than 2 per cent of cancers. But I can assure you that is of absolutely no comfort if somebody you love is affected. Statistics hide a multitude of variations – some people (a very small minority) survive for more than 20 years, and 20 per cent for more than two – but Wyn lived for less than a year after the neurosurgeon delivered the diagnosis following a biopsy of his tumour.

This devastation seemed to come out of nowhere: one minute he was fine, the next, he couldn't recognise familiar landmarks in his home town of Brighton, and days later we were being told that the CT scan of his brain had shown a "lesion" (that's a tumour, in plain English).

How do you live after you find out you are probably going to die? In much the same way as you did before, which is partly denial and partly hope against the odds. You keep going as normal for as long as possible and try not to think about what might come next.

Perhaps we shouldn't do that. You can't predict all deaths, but a majority of us will die of degenerative illnesses, rather than sudden accidents. It might be easier for all of us if we busted our taboo about death and talked about where and how we might like to go before we even get ill.

Wyn died in a hospice, almost by accident. He was supposed to be admitted for two weeks' respite care, but he was much more ill than anyone realised, and he died two days later.

It turned out to be a happy accident, if you could say anything about his illness was a happy anything. Wyn died with his friends and family around him, and everyone was cared for and accommodated in a way that would have been impossible in the crowded hospital ward where he had been a few days previously.

The fact that he could have died in hospital haunts me – his death would have been very different. In the hospice, friends could visit at any time, there was an extra bed in the room where relatives could sleep next to him, and the medical staff, familiar with death, could read the signs and communicate them to us. The atmosphere was a world away from the stressed, "don't talk to me you demanding and annoying relative, I have to wash that patient now/do a ward round/look after 18 other patients", atmosphere of many hospitals.

In most wards, the screens are whipped round the bed of a suddenly much worse patient and, if they die, the body is swiftly removed, in case, you feel, death might be catching. Quick, look away! It leaves behind a feeling of horror.

The UK's first modern hospice, St Christopher's, was founded by Cicely Saunders in south London in 1967. Hospices, which are mainly independent local charities, aim to provide the best possible care for people with terminal illnesses through a range of services including pain control, skilled nursing and counselling. They support the patients' families and close friends, and undertake education and research. Hospices provide flexible care for people who want to die at home, and day-care services. All support is free to the patient. One in three people in the UK have had experience of hospice care.

Independent charitable hospice care in the UK costs £1.2m a day. Of this, £360,000 comes from government sources. The other £840,000 has to be raised through donations. Commissioning and funding of services is an issue for hospices, says Olivia Belle of Help the Hospices, a membership organisation representing the 200 local charities that provide most of the UK's hospice care. They are campaigning for fair funding of the services they provide to enable them to plan ahead and retain staff. This summer, the Government is publishing the first End of Life Care Strategy for adults in England, which has had input from the hospice movement and other providers of palliative care.

We are all partly to blame for the modern hospital way of death, because we don't accept we will die. And maybe doctors don't want to discuss a death because it represents failure. They want to move quickly on to more promising cases, towards an elusive cure. If that is so, the sense of failure feels as if it is inflicted on patients with terminal illnesses, so any mention of the end seems shameful and indecent, an affront. So the manner and place of death becomes a lottery. Everyone is the poorer for it.

Our veneration of the medical profession is also to blame, because it doesn't feel as though you can meet doctors as equals to discuss what might happen, where, and how.

And if any doctors want to change the situation, perhaps they should shout a little louder. It should be possible to make death less terrible – if not for everybody, at least for a lot more of us – but not if we are too frightened even to think about it.

www.helpthehospices.org.uk