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Palliative care

One to one... with Sheila Payne

Help the Hospices Chair in Hospice Studies, Lancaster University.

03 May 2010

One moment that changed the course of your career
Over 25 years ago I worked as an agency nurse and was assigned to provide individual ‘special’ care for an older woman dying alone in a care home in Torbay, Devon. During her final days she taught me so much about the process of dying: 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.

One book that you think all psychologists should read
One I have returned to many times is Young and Cullen’s 1996 book A Good Death: Conversations with East Londoners, a richly evocative account of narratives of loss and death from traditional East Enders. It shows that we are not all equal in death. Instead our deaths are largely determined by how and where we have lived, and that end-of-life rituals and mourning behaviours are socially constructed.

One inspiration
Frances Sheldon, not a psychologist but a social worker, who died tragically young of breast cancer. I first met Frances when she was working at Countess Mountbatten House, the hospice in Southampton,
in 1990. We then worked together at the University of Southampton where she set up the first master’s programme in psychosocial palliative care. She was a pioneering international leader, and her fearless and spirited engagement in promoting psychosocial care for dying people has shaped and inspired my work.

One thing that you would change about psychology
I have a foot in two disciplines – health psychology and nursing – and I think there are strengths in both. However, to generalise, I think that health psychologists could benefit from a greater understanding of pathology and disease processes and have a firmer grasp of the ‘realities’ of health care services, while nursing research could benefit from valuing theoretical concepts more and becoming more methodologically sophisticated. There, I have probably managed to insult both groups.

One particular challenge in working in palliative care
There are formidable ethical, methodological and practical challenges. Debates have raged 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 them as adults. If we are to understand their needs better and improve services, we need more than assumptions or proxy data from health professionals. However, research ethical review committees increasingly position these people as ‘vulnerable’, and ‘gatekeeping’ by health professionals means that recruiting reasonably sized samples is always challenging. 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.

One nugget of advice for aspiring psychologists
Recycle. If your research proposal gets rejected for funding, request feedback, review, revise and resubmit to another funder. My record is eight times before the study got funded. Being a researcher is often more about resilience than brilliance.

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One perspective as a psychologist working in a largely medical context
I have had perhaps a rather unconventional career path for a health psychologist as I have worked in specialist research units focused predominantly on palliative and end of life care. Currently, I juggle a number of exciting but demanding roles. My Chair is funded by a national charity Help the Hospices. In August 2009 I became Director of the International Observatory on End of Life Care, an internationally recognised research group based at Lancaster University. I lead a team of 26 research and support staff and a wider global virtual network of 150 people. Since 2006, I have been Co-Director of the Cancer Experiences Collaborative with Professor Julia Addington-Hall, another psychologist based at the University of Southampton.

This research Collaborative is funded by the National Cancer Research Institute for 5 years and brings together five leading universities to improve the quantity and quality of research in supportive and palliative care. In addition, I am Vice President of the European Association of Palliative Care which is a wonderful way to meet international colleagues and once again try to improve palliative care services across European countries. I am also a Trustee of my local hospice – St John’s Hospice in Lancaster which is a great way to stay in touch with the reality of fund raising and delivering services to one’s community. So I am very happy and busy developing research and educational initiatives in a multidisciplinary context.

One alternative career path you might have chosen
Travel writer. I love the opportunity to visit different countries and currently my job enables me to do that. Some people travel to work, I work to travel!