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We can’t be complacent with end-of-life care

Bev Fitzsimons 07 September 2015

A report claimed that the UK had the best end-of-life care in comparison with 80 countries from around the world. But, our head of improvement, Bev Fitzsimons feels that the good news isn’t an excuse for us to stop trying to make it better.

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I was interested to see yesterday’s report by the Economist’s intelligence unit, which ranked the quality of palliative care across the world. Yet again, international rankings set the NHS streets ahead of other countries’ healthcare systems: something we should be proud of. The report ranks the performance of 80 countries using a number of metrics including the environment, human resources, affordability and quality of care, and the level of community engagement.

However, I read the report with some misgivings. We know that end-of-life care in the UK has been in something of a crisis recently, with public and press concerns about the quality of care expressed in the strongest terms.

These concerns led ultimately to the demise of the Liverpool Care Pathway, which at the time of its creation, was seen as the “gold standard” for end-of-life care. The report itself acknowledges that “even top ranked nations struggle to provide palliative care services for every citizen”.

Are we all that?

We know that there is considerable variation in both access to, and the quality of, end-of-life care, and that many people do not achieve the death they would desire. Successive reports describe examples of poor symptom control, poor communication and poor planning, exacerbated by slow diagnosis, and inadequate services out-of-hours.

Many staff feel ill-equipped to deal with the emotional labour of caring for the dying patient and their families without specialist training. There are plenty of clinical staff who would take exception to the report’s assertion that the UK has “sufficient specialised palliative care professionals”.

What worries me about this, as with other “league tables” is that it can lull us into a false sense of security. To some extent the rankings simply reflect that we are a wealthy country with a universal health care system.

When we look at the heavy reliance of the hospice movement on charitable funding, we need to ask ourselves how secure is our current provision of palliative care in these straitened times? What are we comparing our service with, given that some of the developing countries that form the basis for the comparison cannot even offer basic pain management?

Apples and oranges

This process of comparing apples with oranges doesn’t offer much insight into why, or even if, end-of-life care is better in some countries rather than others. The services being talked about are too complicated to be reduced to Top Trump rankings.

The crudeness of the table could hinder the cross-fertilisation of ideas from one place to another. By simply dismissing the care offered in less developed countries as inferior we may lose opportunities to implement simple changes which come from necessity rather than planning.

Most concerning of all is the absence of the voice of the patient and family in the report.

It is undoubtedly true that reports such as this are helpful in stimulating the development of policies and practices in end-of-life care. But we shouldn’t rest on our laurels, and congratulate ourselves for being better than everyone else, according to a singular report. Many people in the UK cannot get the care they need to live well to the very end and they should be our focus for urgent action.

 

We are currently taking applications from multidisciplinary teams within acute, community and primary care from across the NHS South region which have already demonstrated commitment to transforming patients’ experience of care, and are inviting them to work with us to transform their end-of-life care using the Patient and Family Centred Care quality improvement method.

For more information, please visit the PFCC section of our website, or email