Enabling patients to die where they wish with the best possible care – EAPC Early Researcher Award 2013

Posted on July 4, 2013 by pallcare

Barbara Gomes, trained in psychology and palliative care, and research fellow at the Cicely Saunders Institute, King’s College London, UK.

Dr Barbara Gomes wearing her Prague Charter t-shirt

Two weeks ago I had the honour of being awarded the joint 2^nd prize of the EAPC Early Researcher Award 2013 by Professor Sheila Payne and Dr Franco De Conno at the opening plenary of the 13^th EAPC Congress. It was thrilling to go up to the stage hearing the applause of an auditorium full of experts. And I got a nice t-shirt that I could not use in Prague because of the rain – but I am proudly wearing it now.

The award recognises my research with Professor Irene Higginson, which aims to enable patients with advanced illness to die where they wish, with quality care and support for their families. It came at an important time, as I finish a series of studies examining factors and outcomes associated with dying at home (which is where most people prefer to die), and publish a Cochrane review on the effectiveness and cost-effectiveness of home palliative care services (Gomes et al 2013). I have recently been awarded a five-year grant by the Calouste Gulbenkian Foundation to support the training of early researchers and to develop an optimised model of home palliative care in Portugal, the country where I am from. I am therefore now working both at the Cicely Saunders Institute in London and remotely in Portugal, with an honorary visiting fellowship at the Institute of Public Health of the University of Porto. The Award is a real cornerstone in a story that continues to progress; where completed learning and studies lead to the beginnings of new ones.

Professor Sheila Payne, President, and Dr Franco De Conno, Honorary Director of the EAPC, present the award to Dr Barbara Gomes

In 2004, I was fortunate to be selected by Irene Higginson and colleagues for a job as research assistant in a project on preferences for place of death. I was inspired by the topic because of my interest in choice and empowerment in health care. And I wanted to do the King’s MSc in Palliative Care at the same time – eager to learn more, after a one-year internship in psychology at the Palliative Care Unit of Porto’s Cancer Institute. The supportive and high-standard environment at King’s led me to do a PhD and take part in other studies. These were important in the development of research and transferable skills (for example, Beynon et al 2007; Gomes et al 2012). Irene Higginson linked me into an international network that was researching place of death (Mpinga et al 2006) and I started adding studies to the research programme, which she had initiated in the 1990s. Together, we conducted systematic reviews of preferences (Gomes & Higginson 2013) and factors associated with death at home (Gomes & Higginson 2006, my MSc project), and undertook a pioneer set of projections for place of death in England and Wales (Gomes & Higginson 2008), which were then applied by colleagues to Belgium, Germany and Portugal. Our research has informed health policy and triggered strategic planning, service developments, as well as dialogue with the public and the media about palliative care in the UK and beyond.

My PhD (awarded October 2012) was a mortality followback survey, called the QUALYCARE study (protocol in Gomes et al 2010), where I surveyed 596 bereaved relatives of people who had died with cancer in London in 2009/10. Presented at EAPC Congresses, the findings highlight the importance of the home support provided by primary and palliative care services. Moreover, in this population-based sample of people dying from cancer in London, we found that it can be better to die at home rather than in hospital. Adjusting for confounders, patients who died at home had similar pain levels and greater peace in their last week of life than patients who died in hospital, with less intense grief experienced by their relatives. This is novel knowledge that I hope helps to discover the best models of home care for patients with incurable cancer who wish to die at home in the future, and for their families.

I am grateful to the participants in my studies and to Cicely Saunders International, which supported most of my research and professional development. Finally, this award is thanks to Prof Irene Higginson, an exceptional mentor, who encouraged me to apply and to whom I owe much of what I have learnt about palliative care research.

Acknowledgement
This article will also be published in the September issue of the European Journal of Palliative Care  and is reproduced here with kind permission.

Find out more …
The Early Researcher Award (formerly Young Investigator Award) was created as an annual award by the EAPC in 2009. This award is designed to recognise the work of young (novice) scientists and clinicians in the field of palliative care who have recently made, or are currently making, an outstanding contribution to research. It aims to highlight their personal career development and their potential for the future. Click here to read posts from this year’s prizewinners, Assistant Professor Meera Agar and Assistant Professor Jeroen Hasselaar, and former Early Researcher Award prizewinners.

Coming up…
Look out for announcements about the 2014 Early Researcher Award in the autumn. We’ll keep you posted via the EAPC website, Facebook  and Twitter @EAPCOnlus