Bee Wee, NHS England’s National Clinical Director for End of Life Care, explains the importance of getting feedback to suggested new proposals for caring for the dying

There has been a lot of coverage about the Liverpool Care Pathway (LCP) in the media.

This, and many reports of concerns by patients’ families and some professionals, led the Minister Norman Lamb to set up an independent review of the LCP chaired by Baroness Julia Neuberger.

The review panel published a report ‘More Care Less Pathway’ in July this year. It recognised that people died peaceful and dignified deaths where the LCP was used properly but there were so many examples where it was not used well that it recommended phasing out the use of the LCP within 6-12 months.

In response to the report, the Leadership Alliance for the Care of Dying People was set up, bringing together more than 20 national organisations. This includes those who are responsible for care, those who set standards for care, those who monitor quality of care, and major charities who represent the interests of people with life-limiting conditions and their families.

The Alliance is working on a system-wide written response to ‘More Care Less Pathway’ which will come out later this year.

The Alliance’s clinical advisory group has come up with a set of proposals for improving the care for the dying person, and their families. Now we want to invite everybody who’s involved – patients, families, carers and professionals – to give us feedback about these proposals.

Our proposals revolve around two things in particular: One is to encourage the use of personalised palliative care plans. This is simply a collection of a variety of plans which already exist for many people in this situation: advance care plans, emergency care plans, information about that individual’s wishes about his/her care and treatment, wishes about care in the last days of life, etc.

Nobody should be forced to have such a plan but, for those who wish to have it, their wishes can be more easily communicated with those with whom that individual is willing to share this personal information, including family and carers.

But we need to think through how this could work in practice: where it should be kept so that the information is available in the right place at the right time, how it can be kept up to date without it becoming a burden to the person, etc.

And what about those people who don’t want to have a written personalised palliative care plan? We would like to hear your ideas about all this.

Also, we have identified 10 outcomes which we think should be the hallmark of good care in the last days of life. Each of these outcomes has a set of guiding principles for professionals, and we have explained what this should mean for people who are approaching their last days of life, and their families.

Instead of replacing the LCP with another tool, we want these outcomes to act as the ‘ground rules’ for care in the last days of life.

If we can agree these ‘ground rules’, then we can also match guidance, education and training to make sure that this care can really happen on the ground, whether this takes place in hospital, care homes, at home or elsewhere.

These outcomes and guiding principles have to be clear, strong and workable. So, we want to hear your views – help us to improve on them wherever you think this is possible.

Our proposals are set out in a written document. You can contribute to the feedback by signing up for one of the 12 regional workshops that we are running across the country or submitting your response on our website.

Two more workshops are being run by NHS Improving Quality for representatives of organisations. If your organisation has not yet been invited to one of these, please contact amanda.read@nhsiq.nhs.uk.

Many of the Alliance member organisations are also finding ways to seek feedback from those people they are in touch with. Keep an eye on the website for other ways to get involved.

The engagement period for this set of proposals ends on January 6, 2014. The clinical advisory group will then use the feedback to revise our proposals.

Once approved by the Leadership Alliance, the final version of the advice for professionals will be published by the end of February. After that, we will produce a version of what this means for people approaching the end of life, and their families and carers, so that we all know what it is we are all trying to achieve.

For more information, go to:

• The Leadership Alliance for the Care of Dying People
  
• ‘More Care Less Pathway’
• 12 regional workshops