Palliative care professionals from Latin America and across the world met in Curitiba, in south east Brazil, yesterday to attend the start of the four-day VI Latin American Palliative Care Congress.
EAPC President, Professor Sheila Payne, is among the speakers at the congress. We are delighted to publish the full interview between Professor Payne and the Academia Nacional de Cuidados Paliativos (Palliative Care National Academy), the leading Brazilian palliative care association. This interview is also published in Portuguese on the website of the Academia Nacional de Cuidados Paliativos
Professor Sheila Payne talks about the challenges of research in palliative care to Carla Dórea Bartz, journalist and PR/content producer for the Academia Nacional de Cuidados Paliativos (ANCP)
ANCP: Could you tell us your academic background? How did you start your studies in psychology?
Sheila Payne: I originally qualified as a nurse in 1972 at St Mary’s Hospital, London, UK and then undertook a degree in Psychology at the University of Exeter, followed by a PhD in Psychology in 1989. I am a qualified Chartered Health Psychologist and have worked as an academic health psychologist since 1990.
ANCP: When and why did you begin having interest in palliative care and end of life issues?
SP: I became interested in caring for dying people while I was working as a nurse in London and in New Zealand. Then my PhD investigated quality of life in women with advanced breast and ovarian cancer where I followed the trajectory of women over the last six months of their life. I have worked as a researcher in palliative and end of life care since 1990.
Over 25 years ago I worked as a ‘temporary’ nurse to supplement my income and I was assigned to provide individual ‘special’ care for an older woman dying alone in a care home in Torbay, Devon. During her final days of life she taught me so much about the process of dying, both what was not good enough, like her pain control, and the importance of emotionally being with a dying person. Her death imparted a feeling of great privilege of sharing that final part of her life. My fascination with loss, dying and bereavement and the desire to improve care has not left me yet.
ANCP: What are your main fields of research nowadays?
SP: I am the Director of the International Observatory on End of Life Care, which is based at Lancaster University. The International Observatory on End of Life Care (IOELC) is one of the leading international academic centres in End of Life Studies and plays a major role in delivering research that influences the strategic direction of service development nationally and internationally. The focus of our research is to understand the organisational models of care, and their delivery in different countries, health and economic systems and physical environments. Improving access to adequate pain control, symptom relief and psychological support to patients and bereavement support to families is a major public health challenge. The IOELC has had a considerable impact on the development of palliative care, by undertaking research and evaluations of services at a local, national and international level. Our research and scholarship is grouped into four themes of activity:
1. Research into the needs of older people.
2. Evaluating service models and configurations.
3. Symptom management.
My research is predominately focused on the first two themes and I currently hold 15 research grants. In the past six years we have generated over £6.1 million in research grant income.
ANCP: What is the current state of the art in the studies of bereavement and end of life care in Europe?
SP: I think these are two different topics:
Bereavement studies and research is a wide academic field and there is active research and scholarship in Europe – the main journal is called ‘Mortality’.
In western Europe there is a lot of palliative and end of life care in certain countries and this is coordinated by the European Association for Palliative Care Research Network http://eapcnet.eu/Themes/Research.aspx where there are a number of international research programmes funded. There remain many challenges for obtaining sufficient resources to do research and there is a need to build research capacity and leadership in many countries.
ANCP: What is the role of the psychologist in a palliative care team?
SP: I, and my colleague Saskia Jünger from Germany, have jointly led the EAPC Task Force on the Role of Psychologists in Palliative Care. We undertook an international survey in eight languages that provided a lot of information about the diversity of functions and activities of psychologists working in palliative care contexts.
Jünger S and Payne S. Guidance on postgraduate education for psychologists involved in palliative care. European Journal of Palliative Care, 2011, 18(5): 238-252.
ANCP: What does he or she need to master in order to work in a palliative care team?
SP: Obviously the psychologist needs to complete a first degree and the normal qualifications required by their country. I and a team of people were commissioned by the British Psychological Society to prepare recommendations on a number of important competences.
Kalus C, Beloff H, Brennan J, McWilliams E, Payne S, Royan L and Russell P. The Role of Psychology in End of Life Care. The Professional Board of the British Psychological Society, March 2008.
ANCP: In your opinion, nowadays, what are the main challenges palliative care faces in the world?
SP: There are good reasons to be hopeful and positive about how much better the needs of people with advanced disease and approaching the end of life are recognised by governments and health care organisations in the last decade. In my view, the challenges are to ensure that access to adequate, timely and affordable medications, including opioids, is available to everyone in pain. This requires work at governmental level to ensure balance between harm reduction agencies and access to pain control. There are public health challenges in addressing population needs such as ageing, more people living and dying with chronic diseases, and new medical technologies that enable people to live longer with chronic conditions. We need to think more proactively about models of care that are less demanding of resources and are more sustainable, that build capacity in communities and health and social care workers at all levels.
ANCP: What are the messages you will bring to the VI Latin-American Palliative Care Congress?
SP: I have been invited to talk about research and building research programmes in the VI Latin-American Palliative Care Congress. I am aware that there are formidable ethical, methodological and practical challenges to conducting research in palliative care. Debates have raged in the journals over whether it is ever ethically justifiable to recruit dying people into research studies. My view is that collecting evidence on the experiences of dying people and their families is justified because not to do so is disempowering and negates their autonomy as adults. If we are to understand their needs better and improve symptom control and the configuration of services, we need more than proxy data from health professionals or to make assumptions about their wishes.
We need to respect decisions made by patients and families. Many will have more important things to do in their final days than research, while others like to contribute to research as part of a lasting legacy to others. I look forward to learning more from people attending the conference about their research and building collaborations for the future.
The EAPC sends its best wishes to all involved in the VI Latin-American Palliative Care Congress. We will bring you more news from the conference later this week.