New draft guidance on end-of-life care proposed

Topics covered: Ridouts professional advice

New draft guidance from the National Institute for Health and Care Excellence (NICE) on the treatment of those in their last days of life has been put forward this week. The draft guidance comes in the wake of the phasing out of the highly criticised Liverpool Care Pathway (LCP).

The new guidance issued by NICE is designed to address many of the failings that the LCP displayed in practice. It is intended for patients, relatives, hospitals, hospices and others involved in end-of-life care, and is open for public review until September 2015.

It has a focus on providing the personalised care, good communication and shared decision-making between staff, relatives and patients that was lacking from the LCP.

The LCP was introduced in the late 1990s for all patients deemed ‘dying’, with the goal of ensuring those in their last days have a dignified and comfortable death.

However, although its initial reception was positive, and its process of patient evaluation by a multi-professional team who would then go on to consider and implement palliative care was technically sound, in recent years it has been mired in controversy, and it’s use in practice found wanting.

Many decisions to put patients on the pathway were made hastily in ward settings without the oversight of an experienced Doctor. Lack of communication was also an issue, with almost half of the cases resulting in neither patients nor family being informed or consulted about their placement on the LCP. Furthermore, the care was not designed to be a one-way street to death, yet in 2012, controversy arose indicating that this was what happened in most cases, and that some patients who may have survived longer had died because of their placement on the LCP.

Many professionals have raised concerns with the LCP. Professor Rob George from the Association of Palliative Care raised concerns that with its industrialised approach to managing dying people “Everyone gets preoccupied with ticking the boxes”. The LCP had involved a checklist to ensure patients were free from invasive procedures and medications that were no longer necessary. However, this sometimes resulted in the withdrawal of treatment, water and food, with individual wants often disregarded in favour of its procedures and checklists. This clinical sense of checklist based treatment is supported by the release of figures uncovered by a Freedom of Information Act disclosure that indicated some 2/3rds of NHS trusts had received financial incentive payments (£12 million overall) for meeting “targets” using the LCP.

This culmination of criticism meant that in July 2013, the Department of Health stated the use of LCP would be phased out over the next 6-12 months.

The new draft guidance promotes transparency and communication, encouraging staff to involve patients and relatives in decisions, as well as proposing the use of multiple medical experts to come to a judgement on whether a patient is approaching their end of life and have their treatments adjusted. Its introduction is welcomed by The Department of Health.

In the draft guidance NICE addresses the problem of patients left with little water and treatment, stating it is important that staff should be encouraged to give dying people drinks if they wish, and for those that can no longer verbalise, to undertake daily reviews of medication and hydration during patient checks.

Commenting on the new draft guidance, Sir Andrew Dillon, the Chief executive of NICE said: “Recognising when we are close to death and helping us to remain comfortable is difficult for everyone involved.

“The Liverpool Care Pathway was originally devised to help doctors and nurses provide quality end-of-life care. While it helped many to pass away with dignity, it became clear over time that it wasn’t always used in the way it was intended.

“Some families, for example, felt that elderly relatives were placed on to the pathway without their knowledge or consent. Following a review, the pathway is no longer used.

“Earlier this year, the parliamentary and health service ombudsman said that end-of-life care could be improved for up to 335,000 people every year in England. The guidelines we are developing will ensure that people who are nearing the end of their lives are treated with respect and receive excellent care.”

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