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Palliative Care Conference: Towards evidence-based compassionate care

Author: Dr Sarah Russell
16 March 2018
  • Chris Pointon and Lesley Goodburn

Dr Sarah Russell, Head of Research at Hospice UK, reports from the first day of the Association for Palliative Medicine’s Palliative Care Conference in Bournemouth.

Why is the Palliative Care Congress so important? Maybe it is about promoting evidence-based compassionate care, showcasing new approaches to care or discussing new research findings. But perhaps it is about a group of people spending productive time together to discuss, think and act to make a difference to the lives of patients and their families. As Professor Simon Noble commented, “if everyone goes home with two new things they have learnt, then that will be good.” 

Professor Noble and Professor Julia Downing welcomed everyone to the conference and reminded us of the challenges that palliative care faces in an ever-changing landscape of economics, policy and care.

Chris Pointon shared with us the story of his wife Kate Granger, reminding us that Kate’s core values were communication (introducing yourself is about a connection between people), the little things, person-centred care and seeing the person (not talking about the ‘girl with sarcoma’). The inspiring achievement of their #hellomynameis campaign is its sustained legacy – operating in over 20 countries in every continent. Chris is determined that people understand the back story to the campaign and that #hellomynameis is used in every country in the world.

Choosing amongst the parallel sessions was tricky. Attending End of Life Care in Hospitals chaired by Dr Andrew Davies was stimulating and enlightening. Anita Hayes from Hospice UK discussed ‘Building on the best’ a quality improvement programme supporting improvements in end of life care in acute hospitals. Commissioned by Macmillan Cancer support, the programme started in March 2016 and aims to support people in hospital approaching end of life to receive high quality care that respects their wishes and needs. Covering the areas of shared decision making, pain and symptom management, communication on transfer and outpatient setting, the programme used a Theory of Change approach to support care. A proactive virtual community of practice shared knowledge and leadership using Project Echo methodology. Sharing examples from one of the project sites, Guy’s and St Thomas’ Foundation Trust, emerging data shows the approach can improve care. More information available from the Hospice UK website.

Dr Gursaran Purewal, Consultant from Wirral University Teaching Hospital NHS Foundation Trust, presented on the Emergency Care Improvement Programme (ECIP) ‘Improving care for patients who have clinical uncertainty of recovery: the lens of acute admissions.’ Discussing how they introduced the AMBER care bundle in one part of the trust, Dr Purewal’s honest and practical reflections demonstrated how a quality improvement programme improved end of life care by systematically increasing awareness, prognostication, improving coordination and continuity, and creating better discussions and documentation of patients' wishes.

Dr Fiona MacCormick, taking time out from being a palliative care register to complete her PhD at Newcastle University, discussed ‘End of life care in acute hospital wards: the importance of dialogue.’ Having spent 280 hours of ward observation and conducted 36 interviews with nine patients, 11 relatives and 16 staff, Fiona shared key findings including the difference between information and decision making conversations, the value of ongoing conversations, and the balance of information alongside patients’ wishes and ability to participate.

Simon Noble introduced the afternoon plenary speaker, Professor David Currow from the University of Technology Sydney and Hull York Medical School, whose enormous contribution to the evidence base includes carrying out the difficult studies, difficult questions and presenting the difficult findings. Professor Currow  reminded us that research is concerned with care, not for those in today’s audience but for all the patients and their families. Sharing the work of the Palliative Care Clinical Studies Collaborative, Professor Currow emphasised that “what we have always done may not be what we always do as knowledge changes -  knowledge has a half-life – we need to face this and enable better, new evidence that is personalised to each person.”

Research was an important thread during the day, from appraising the qualitative research literature from Professor Julia Downing of the Palliative Care Research Society to ethical issues in palliative care research from Dr Erna Haraldsdottir of St Columba’s Hospice in Scotland. We also learnt about using social media and IT in palliative care research, and enjoyed Dr Chris Farnham and Dr Amy Proffitt’s interactive session on communication skills. The day concluded with the powerful ‘Homeward Bound,’ the story of Seth and Lesley Goodburn. Seth died 33 days after being diagnosed with pancreatic cancer.

As I sat with Lesley and Chris Pointon during the day (eating chocolate – always a good staple at conferences, although Chris chastised me for not buying them from Asda as they supported #hellomynameis), I reflected that the day began and ended with inspiration turned into action through the #hellomynameis campaign and the story of Homeward Bound. Turning inspiration into action was a key take home message from today.

For more information visit Palliative Care Congress

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