Stairway to Heaven
Medical humour is traditionally pretty black. All those years of being confronted with illness, misery, disease and death mean that you have to be able to see the funny side of even the most tragic events – although if you think we are the only ones who cope in that way you have never been at a gathering of clergy talking about funerals they have conducted. So it’s not surprising that the Liverpool Care Pathway, introduced to improve care for patients who are terminally ill, is known on the shop floor as the Stairway to Heaven…………looking after patients who are dying is at once an immense privilege and almost unbearably sad, especially in general practice where you may have known the person for many years. Many of us have also witnessed absolutely appalling management of a patient’s final phase of life, especially in acute units where active treatment has continued long after the point where it was going to do any good, or in understaffed overburdened wards where too few nurses rush around trying to care for too many frail elderlypatients. GP’s are now being encouraged to identify those of their patients who may be in their final year of life in order to have That Conversation about DNAR’s and advance directives, although one can see how clumsy handling of that idea could do more harm than good…………….handing people one of those “We are the 1%” badges at flu vaccination time perhaps? (Around 1% of a GP’s patients will die in any given year according to the latest training module on end-of-life care, although if the GP’s name is Shipman it might possibly be a bit higher…………..)
However, no bereavement courses or training on terminal care can prepare you for the time when it’s your turn to be the grieving relative as someone you love comes to the end of their journey. Nothing prepares you for the terrible realisation that for all the power of medicine, this death really is going to happen and there is nothing you or anyone else can do to prevent it. No amount of crying or wailing or pleading will make any difference to the solid implacability of death. Many people have written and spoken about how surreal it all seems – how can everyone be doing their shopping and going to the football and chatting about TV programmes when something so momentous is happening? When my mother died it was so sudden that I was convinced she hadn’t realised she was dead and was still in the house, and every time the phone rang I expected it to be her asking me angrily what on earth I thought I was doing arranging her funeral.
For the dying person’s family, these are weeks and days they will remember forever, in that strange intense light that seems to shine around the deathbed. And perhaps not just the family – I still remember with crystal clarity the very first death I had to certify as a young doctor. I knew the patient well because I had been looking after her on the ward for months, and had been barked at by my consultant for telling her family she was dying when we were still maintaining the fiction that she was going to recover. They could see for themselves that she was deteriorating, was in fact unconscious, so when they asked me how she was doing I couldn’t bring myself to lie to them. So when my much-loved auntie took ill I very much appreciated the nursing staff being honest with me and telling me she was dying. She herself had known it for a long time, and had tried to spare us for as long as possible, but had organised her funeral and tidied up her affairs to make it as painless as it could possibly be. The three weeks that followed were a textbook example of brilliant terminal care. That does not mean that I wasn’t utterly heartbroken – she was in the cottage hospital in the little town where she lived, and I have no idea how I didn’t have an accident driving up and down every day because I couldn’t see the road for tears. However, the fact that she was in town and not a distant hospital meant that all her friends could visit until the last few days when the staff asked for family only. Her GP’s surgery was next door so the doctors could look in as often as necessary – I never crossed paths with the GP but it was clear that her symptoms were being carefully managed. The nursing care was superb: her hair was brushed, her nighties were clean, her skin was intact – and the flowers her friends had brought were beside her bed even when she could no longer see them. One day when I was sitting by her bed, as I would do for hours in those last days of anticipatory grief, a plate of tuna sandwiches and a cup of tea materialized silently at my elbow. It was all those little things………..
Three months later, my father died. He went in for a routine respite admission to a local care-of-the-elderly unit, and three weeks later he was dead. In retrospect, I now wish I had formally complained about the catalogue of catastrophes that undoubtedly hastened his death – the over-medication and drug errors, the neglect, the lack of dignity and cleanliness, the unpleasant attitude of the staff who treated him like some kind of pet while overtly hostile to the family, especially me. Although he was extremely frail and I was not unrealistic about his prognosis, I had been around the houses long enough to know the difference between good nursing care and bad nursing care, and after I phoned the consultant to express my concerns about how quickly he had deteriorated I was a bit taken aback to have Dad’s “named nurse” snarl at me “You didn’t tell us you were a doctor!” next time I visited. The obvious question is what difference it would have made if I had – would they have taken better care of him knowing there was a trained eye watching, and if so what about all the other patients who had no medical relative to look out for them? The ward appeared to be being run by a clique of older nurses over whom the young charge nurse clearly had zero authority, who very much did things their own way and to their own requirements regardless of the patients’ needs. The day I rang the consultant was the day I had come in and found Dad sitting in dirty clothes with food stains down the front, unwashed and unshaven, trapped in a hard chair with a dry mouth and a glass of water he couldn’t reach, complaining that his bottom was sore. His hearing aid and glasses disappeared, so did the books I brought for him and the new socks. We never found out what happened to the flowers, and when he died we were given a poly bag containing someone else’s pyjamas. Being a ward full of elderly people, one might have expected that they would be quite good at dealing with the end-of-life issues, might even have dealt with anxious and grieving relatives before, but it certainly didn’t feel like it. It was all those little things……………..
If the Liverpool Care Pathway helps to prevent some of those distressing experiences then I’m all for it – although I would guess that good teams are doing it all anyway and bad teams will just do it wrong. But at least it brings the issue into the open and highlights the things that need to be covered in the last weeks of life – including, for hospital teams, remembering to let the GP know their patient has died. It’s the last thing we do for our patients, so please let’s do it well.
