Future-proofing Dame Cicely Saunders’ Centenary of Change: Integrating Research, Education and Clinical Care

This year’s 10th EAPC World Research Congress celebrates important milestones for palliative care in Europe and the world: 20 years of the EAPC Research Network, the 30th anniversary of the EAPC, as well as the commemoration of the 100th birthday of Dame Cicely Saunders. 

Today, Irene Higginson, Professor of Palliative Care and Policy, King’s College London, and Director, Cicely Saunders Institute, London, UK, gives a glimpse of the Vittorio Ventafridda Lecture 2018 that she will give at the Congress in Bern on Thursday 24 May 2018.

Professor Irene Higginson

I am honoured to give the keynote lecture at the 10th World Research Congress of the European Association for Palliative Care, in honour of Professor Vittorio Ventrafridda, especially in this the centenary year of Dame Cicely Saunders. Vittorio’s centenary year will be 2027. I hope then, that in 11 years’ time, we will be celebrating even more achievements.

I was privileged to know Vittorio and work with him on several World Health Organization projects and ensuing books. In our projects together, Vittorio worked and discussed ardently, and passed his enthusiasm to many of us who were engaged in writing, reviewing, collating the World Health Organization Solid Facts booklets with him. (You can download the resulting booklets here.)

I remember visiting Vittorio’s apartment in Nice one year to spend our summer holidays working and planning the content. His wife, Maria, was very hospitable and patient with us all.

 

 

 

 

Vittorio Ventafridda Lecture 2018 Integrating Research, Education and Clinical Care

In the lecture, I was asked to focus on the development of the research agenda at the Cicely Saunders Institute. I also reflect on how we integrate research, education and clinical care – something many aim for. We are facing a changing landscape of care and treatment – where have we come from and where care is going in future years – what are the population, discovery, care service and technological challenges and opportunities ahead.

Research to achieve the best in care

Achieving the best for patients and families requires the best in care, and this means delivering evidence-based practice. Evidence-based practice relies on high-quality research evidence, integrated with clinical expertise and patient and family preferences. However, evidence is often lacking. When robust evidence for a symptom is lacking clinicians often provide medicines ‘off-label’ (i.e. use pharmaceutical drugs for an unapproved indication or in an unapproved group, dosage, or administration), rather than do nothing. One study, in a highly regarded palliative care unit, found that around one third of prescriptions were ‘off-label’; breathlessness was one of the most common indications for off-label prescribing (n = 449, 20%).1Yet, as we have learned from recent research, some medicines that have been widely prompted have limited or no effectiveness.2

An even greater challenge exists for the development of services, educational programmes and tools used in practice. Here, there are many examples where clinicians and policymakers have implemented locally, nationally and even internationally, without evidence, on the basis that the intervention “seems like a good idea,” or on small, single reports, often arguing that “something must be done”.

Innovation and proper study

But we need both innovation and proper study; without both, the best for patients and families will not be realised. Risks of poor evaluation prior to such implementation include diverting resources from other things that would be effective, poor implementation, lack of credibility of the specialty and, more seriously, patient or family harms that outweigh benefits.

There is an even more basic reason for conducting research; evidence finds that research-active healthcare services deliver better care, even for people who are not recruited into studies.3  Thus, if clinical services want to offer the best in care, research should be a core part of their activity.

Integrating clinical care, research and education

To reflect on the past, I have been fortunate to find a correspondence between Cicely and Vittorio from 1986, in response to the article led by Vittorio and published in the Journal of Pain and Symptom Management of that year.It is interesting to see how they discuss the issues of clinical relevance and how evidence is critical for practice. The correspondence can be found in the Dame Cicely Saunders archives at King’s College London, an archive that was so diligently prepared by Professor David Clark. The correspondence debates the use of methadone, something about which Vittorio reported in three published studies, including with international colleagues, such as Professors Eduardo Bruera and Robin Fainsinger, and his local team, including Dr Franco De Conno.4-6 Research into the best use of methadone continues today.7-9   

Integrating clinical care, research and education is often what patients and families want.10 And this can be achieved. There are many examples of landmark research with randomised and observational designs, even this year, which are already transforming care.11-24 Many issues that we are already tackling in palliative care are relevant to the future of much of health and social care; which is now waking up to issues we have grappled with for a long time, like complexity, multimorbidity and patient and family choice.25-31

The science of palliative care, the science that puts the person before their disease(s), coupled with its clinical innovations, has much to offer the wider ‘ologies’. We have many approaches, measurement tools, knowledge and skills that are relevant. Can we become equipped or prepared to pick up the challenge and opportunity of such a central role?

Links and references

10th EAPC World Research CongressProfessor Irene Higginson will give the keynote lecture: Future-proofing Dame Cicely  Saunders’ Centenary of Change: Integrating research, education and clinical care at 10.40 on Thursday 24 May at the 10th EAPC World Research Congress in Bern.

View the abstract for Irene’s lecture, and all other abstracts for the 10th EAPC World Research Congress, in Palliative Medicine, volume: 32 issue: 1_suppl, page(s): 3-330. https://doi.org/10.1177/0269216318769196

 

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