The importance of measuring outcomes that matter to patients and families

This year’s Annual Marie Curie Research Conference on 27 March, held jointly with the Royal Society of Medicine, will focus on the future of palliative care. Dr Fliss Murtagh, Reader and Consultant in Palliative Medicine

Fliss Murtagh, Reader and Consultant in Palliative Medicine, will be speaking at the conference about which clinical outcome measures to use in palliative care, and when, how and why we should use them.
What is your presentation about? I’ll be talking about the urgent need to adopt meaningful outcome measures in palliative care; outcome measures which reflect what matters to patients and families, and which can allow palliative care to continue to thrive and grow amid the major constraints on NHS resources, and the related NHS drive toward outcomes-based healthcare. What is meant by 'outcome' measures? The word ‘outcome’ is often used in a lay sense to mean ‘the result or consequence of something’. However the word ‘outcome’ in the context of healthcare is more accurately defined as ‘a change in health status’ as a result of that healthcare. So outcome measures attempt to capture the difference that healthcare makes for patients and/or family, rather than the structure and processes which are needed to deliver care (which are generally easier to measure, but which don’t necessarily guarantee a positive difference). Haven’t we been measuring already? Structure (such as the number of palliative care services or beds) and process (such as 24/7 availability of support) measures have been in place for some years, but they are not enough on their own. We also need to know whether provision of these services, beds and so on, or for example ensuring 24/7 availability, is really making a positive difference for patients and families. I believe palliative care does make an enormous difference for many patients and families across the country, but, increasingly, we need to be able to demonstrate this with real outcomes data to others outside of palliative care, such as commissioners, policymakers, other professionals and the public. Why is this important? For some years now, palliative care has relied on a combination of patient stories and the ‘drawerful of thank you letters’ as proof of a good job well done. However the drive within the NHS towards outcomes-based healthcare means that this inevitably has to change. We are faced with two options: having outcomes imposed upon us (which may not necessarily be the best outcomes) or ensuring we drive forward introduction and use of the best outcome measures from within the speciality. If we do not begin to use outcome measures which are relevant and meaningful for palliative care patients and their families, there is a real danger that inappropriate measures will be imposed upon us. Some would argue this already happened when, for instance, the number of Liverpool Care Pathway (LCP) deaths was used as a process metric without sufficient awareness of whether the LCP was making a positive difference (ie the outcome was not being measured). What will you describe and explain? I will provide evidence about valid, reliable and acceptable measures for palliative care, and propose the best outcome measures for clinicians to use in day-to-day practice.  I will also explain what training and support is needed to make this a reality and emphasise the importance of feedback of the findings when outcome measures are used, so this feedback can use this to inform and improve care. In partnership with Hospice UK, the Cicely Saunders Institute is shortly going to be providing Resource Packs (training and other support materials) to help palliative care services around the country to implement outcome measures, through the Outcome Assessment and Complexity Collaborative (OACC) project.  Any palliative care service can register interest in accessing these Resource Packs. Simply email as explained on the OACC project page. How does this relate to what is happening nationally in palliative care? There are two national initiatives at present:

  • the testing of the palliative care Development Currency

  • the piloting of the national Palliative Care Clinical Dataset

The measures which I propose are closely aligned to these two initiatives, because it is important that palliative care providers do not have to collect two, three, or even more different sets of data and outcomes, but only one set which can deliver what they need to inform and improve clinical care, help support quality improvement and deliver what might be required nationally. Visit the Marie Curie website for more information on the conference and to view the programme. Updates are available at #futurepall.