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The Guardian view on the new guidelines for end-of-life care The Guardian view on the new guidelines for end-of-life care
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Most of us only experience another person’s death close up a very few times. It is difficult to imagine in advance how our partner or parent will respond to the final days of life, nor how we will respond to them. Very few of us talk about death at all. That puts a particular burden on the doctors and nurses who care both for the dying and, indirectly, for their families. Most of us only experience another person’s death close up a very few times. It is difficult to imagine in advance how our partner or parent will respond to the final days of life, nor how we will respond to them. Very few of us talk about death at all. That puts a particular burden on the doctors and nurses who care both for the dying and, indirectly, for their families.
When it was introduced in the 1990s, the Liverpool care pathway was intended to spread across the health service what had proved to be a successful way of managing the closing days of a life. It was supposed to ensure that as far as possible the dying were where they wanted to be, as comfortable as possible, with the minimum amount of intervention. It was supposed to create a space of a few hours or days where the patient and their family could say goodbye.When it was introduced in the 1990s, the Liverpool care pathway was intended to spread across the health service what had proved to be a successful way of managing the closing days of a life. It was supposed to ensure that as far as possible the dying were where they wanted to be, as comfortable as possible, with the minimum amount of intervention. It was supposed to create a space of a few hours or days where the patient and their family could say goodbye.
It is fashionable at the moment to argue for an airline-safety approach to hospital care in order to avoid mistakes. In surgery the methodical, unemotional box-ticking of the cockpit is clearly appropriate. Just as clearly, it is not appropriate for end-of-life care. The clue is in the word “care”. Guidelines may be helpful, but the point of a checklist is not to stimulate empathic engagement, but to eliminate it. The Liverpool care pathway – LCP, as it became known – was a good plan that in an overstretched and in places badly managed NHS suffered a predictable failure. Families were left distressed and angry at what appeared to be a neglectful, hardnosed system. It was sometimes misunderstood as a clinical decision to allow a patient to die who might have lived. Some relatives complained it had been introduced without consultation by unqualified staff over a bank holiday. Worst of all, an independent review found there were local financial incentives relating to the number of patients on the LCP. On Wednesday, one doctor called it an industrialisation of dying. Related: The value of checklists in end-of-life care | Letters
It is fashionable at the moment to argue for an airline-safety approach to hospital care in order to avoid mistakes. In surgery the methodical, unemotional box-ticking of the cockpit is clearly appropriate. Just as clearly, it is not appropriate for end-of-life care. The clue is in the word “care”. Guidelines may be helpful, but the point of a checklist is not to stimulate empathic engagement, but to eliminate it. The Liverpool care pathway – LCP, as it became known – was a good plan that in an overstretched and in places badly managed NHS suffered a predictable failure. Families were left distressed and angry at what appeared to be a neglectful, hardnosed system. It was sometimes misunderstood as a clinical decision to allow a patient to die who might have lived. Some relatives complained it had been introduced without consultation by unqualified staff over a bank holiday. Worst of all, an independent review found there were local financial incentives relating to the number of patients on the LCP. On Wednesday, one doctor called it an industrialisation of dying.
Two years ago, the then health minister Norman Lamb announced that it would be replaced. Now the National Institute for Health and Care Excellence has produced draft guidelines that attempt to remedy the shortcomings of the LCP. They stress the importance of communication and consultation, more training for medical staff, and better research to help to understand more fully the process of dying. All of those are needed. Yet doubts linger. There is too much evidence, not only in hospitals but in the wider social care sector and – as we reportedon Wednesday – in care homes too, that the needs of the very old and frail are not given the respect, the consideration or, most importantly, the finance that they should be. Councils cut funding and screen out the elderly from care rather than screen in, so that more and more of them and their families are left struggling to find help and support. There is a culture gap, an impatience with the confusion of mind and complexity of need that is often all that people see in a very old person. None of this bodes well for any systemised approach to looking after patients in their final hours and days. Guidelines are cheap. Providing the resources so that they are properly observed will cost real money.Two years ago, the then health minister Norman Lamb announced that it would be replaced. Now the National Institute for Health and Care Excellence has produced draft guidelines that attempt to remedy the shortcomings of the LCP. They stress the importance of communication and consultation, more training for medical staff, and better research to help to understand more fully the process of dying. All of those are needed. Yet doubts linger. There is too much evidence, not only in hospitals but in the wider social care sector and – as we reportedon Wednesday – in care homes too, that the needs of the very old and frail are not given the respect, the consideration or, most importantly, the finance that they should be. Councils cut funding and screen out the elderly from care rather than screen in, so that more and more of them and their families are left struggling to find help and support. There is a culture gap, an impatience with the confusion of mind and complexity of need that is often all that people see in a very old person. None of this bodes well for any systemised approach to looking after patients in their final hours and days. Guidelines are cheap. Providing the resources so that they are properly observed will cost real money.