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End-of-life care took the wrong path

by
19 July 2013

A government panel has pronounced on the Liverpool Care Pathway. Richard Harries explains

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Wrong signals: families were often left in the dark about care pathways and assumed the worst

Wrong signals: families were often left in the dark about care pathways and assumed the worst

JANE was clearly dying, but when the family visited her, she could still talk a little. When they came the next morning, they found that she had been moved to a ward on her own, and all the tubes had been removed.

When they asked about this, they were told she had been put on the Liverpool Care Pathway (LCP). They had never heard the phrase before. It seemed to them less a care pathway than a sentence of death. This impression was reinforced when it became known that hospitals were receiving financial incentives for the number of patients that they put on the Pathway.

Because of stories like this, the Government set up a review panel chaired by Baroness Neuberger, Senior Rabbi of the West London Synagogue and a cross-bench peer. The panel set up four meetings with aggrieved relatives in different parts of the country, had a number of other meetings with people and organisations involved in the care of the dying, and received 650 submissions. It reported on Monday.

One thing that needs to be made quite clear is that the Liverpool Care Pathway was set up on fundamentally sound principles, and the vast majority of patients who were put on it were helped towards a dignified and appropriate death.

Good care for the dying was pioneered in the hospice movement, which, from Dame Cicely Saunders onwards, has so often had a Christian inspiration. The purpose of the LCP was to take this good quality care for the dying into ordinary hospitals by providing a series of alerts and checks about what is appropriate when a person has only a few days or hours to live.

The Christian principles on which this is based, which are reflected in all our medical codes, are quite simple. It is wrong deliberately to hasten a person's death, but it is entirely proper to stop treatment that is burdensome and futile. There comes a point when a person is clearly dying, and at that point the priority is to keep them free from pain, and ensure that they have the food and liquid they can take.

In a world where so many ethical issues are disputed, it is good to record unanimity on these principles between the Roman Catholic, Anglican, and other Churches, as well as the secular medical organisations.

 

BECAUSE of our human reluctance, sometimes, to accept that someone we love is dying, Christians have an important part to play in getting this message across to the wider public. Good-quality care for a person in his or her last days and hours is not "assisted dying".

This good-quality care may involve the removal of all tubes, and at that point the patient may not want anything to eat or drink. Provided the mouth is kept moist, that may be all that good care requires at that stage.

So what kind of things went wrong? In a way, the Liverpool Care Pathway was a victim of its own success. Because it is based on fundamentally sound principles, and has been rolled out in a big way by hospitals not only in this country, but abroad, there has not been the necessary training and monitoring of standards to ensure that those principles have always been put into practice. The panel were particularly concerned about:

1. The failure of too many doctors to explain to the relatives what the situation was, and how the patient would be treated. One relative, for example, was simply told in a very brief word over the phone, when they had no idea what the LCP was.

2. The decision to put someone on the LCP's being made by a junior doctor at night or over the weekend, rather than a designated senior medic responsible for the person's care-plan in their last days and hours.

3. The use of the LCP as a "tick-box" exercise rather than a prompt to sensitive and personalised decision-making.

4. A patient's not being allowed fluid by mouth when they were still quite capable of taking it.

The panel made 44 recommendations, many of which require relevant doctors' and nurses' organisations to improve training for people caring for the dying, and continuing to ensure that those involved in that work remain up to standard.

 

THE recommendation that the LCP should be phased out and replaced by individual care-plans for the dying will be a bitter blow to all those who have worked so hard through it to improve the quality of dying in ordinary hospitals. That work needs to be acknowledged.

But there is no doubt that some things have gone badly wrong. Provided the doctors' and nurses' organisations take seriously the recommendations of the panel's report, we can be hopeful that care for those dying in hospital will be exemplary for everyone.

Lord Harries of Pentregarth was a member of the panel reviewing the Liverpool Care Pathway.

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