The Palliative and End of Life Care Group is headed by Dr Stephen Barclay (University Lecturer in General Practice and Palliative Care), supported by Dr Morag Farquhar (NIHR Career Development Fellow).
We have extensive collaborations with clinical colleagues working in the community, hospitals and hospices locally; with local and national commissioners and policy makers and with national and international academic colleagues. We seek to identify ways to optimise palliative and end-of-life care for cancer and non-cancer patients and their informal carers through rigorous research, employing both qualitative and quantitative approaches.
The End of Life Care Theme of the NIHR Collaborations for Leadership in Applied Health Research and Care (CLAHRC) for Cambridgeshire and Peterborough (Theme Principal Investigator Dr Barclay) is an important component of our research activity. To visit the CLAHRC for Cambridgeshire and Peterborough website, please click here.
A full list of staff is available here.
Research Interests and Projects
Systematic literature reviews
- A suite of reviews concerning the attitudes of patients and practitioners towards timing of conversations about end of life care for patients with heart failure, Chronic Obstructive Pulmonary Disease, cancer, dementia and the frail elderly.
- The impact of radical treatment for lung cancer on quality of life in the elderly (collaboration with colleagues at Papworth hospital).
Hospital admissions close to the end of life
- Study of national datasets concerning people admitted from the community who die shortly after admission to hospital.
- Qualitative study of practitioners in community and hospital involved in the care of patients who died within three days of admission.
Evaluation of Breathlessness Intervention Service
Randomised controlled trial of pharmacological and non-pharmacological intervention for patients with intractable breathlessness in advanced disease.
Living with Breathlessness
Longitudinal study of care needs and preferences of patients with advanced chronic obstructive pulmonary disease (COPD) and their informal carers, using mixed method interview and postal survey methodology.
Sharing Bad News
Collaboration with the Dr Gail Ewing (PI; Centre for Family Research) to develop an intervention to support patients with cancer share the news of their diagnosis.
Educational Intervention for Carers on Breathlessness
Development and evaluation of an educational intervention for informal carers of patients with breathlessness in advanced disease, including a systematic review and using qualitative methodology.
CAPE study (Community cAre Pathways at the End of life)
Mixed methods study reviewing care provision in the last year of life of 400 patients in 20 General Practices through case notes review, case discussion groups and interviews of health professionals and bereaved lay carers.
“Patient choice” at End of Life: An Anthropological Exploration
A PhD study that aims to provide a contextualised qualitative account of what is involved in ‘choosing’ end of life care.
GP and DN educational needs assessment
A questionnaire study of local General Practitioners and Community Nurses, investigating their training and knowledge in key areas of Palliative Care, that is informing several major educational initiatives, with which the group are closely associated.
PACE study (Plans And Care Expectations)
An investigation of the existence and nature of the transitions to Palliative and End of Life Care in two contrasting illnesses, incurable lung cancer and severe COPD.
Artificial nutrition decisions for people at risk of lacking capacity
A study of the way decisions are made to provide, withhold or withdraw artificial nutrition, including a systematic literature review, observation of a hospital team’s meetings, case notes reviews and prospective community-based field work.
“Just in case” bags: anticipatory prescribing in End of Life Care
An evaluation of national policy encouraging General Practitioner prescribing of drugs for patients near the end of life, to be stored at home “just in case” they are needed.
Medical student education in End of Life Care
A collaboration with colleagues in the Medical Education Research Group of the Clinical School in a longitudinal cohort study of preclinical and clinical medical students in the University, including students’ attitudes towards End of Life Care and their Death Anxiety.
Hospice at Home – a service evaluation
A formative service evaluation of the Cambridgeshire Hospice at Home service, through routine data collection and interviews with patients, lay carers, staff and key stakeholders.
“Share my Care” electronic register of Cambridgeshire End of Life Care patients
A study of the attitudes of patients, lay carers and health and social care professionals towards the sharing of electronic patient records across the health care system.
Living & dying in extreme old age
Collaboration with Professor Carol Brayne & Dr Jane Fleming and the CC75C collaboration – a qualitative and quantitative study of experiences and preferences for end of life care among those aged 90 and older (cohort study).
Publications
A full list of the group’s publications are available here.
Key recent publications include:
- Momen N, Hadfield P, Harrison K, Barclay S. (2012). “Managing pain in advanced cancer: a survey of United Kingdom General Practitioners and Community Nurses”. Journal of Pain and Symptom Management: paper e-published in advance
- Momen N, Hadfield P, Kuhn I, Smith E, Barclay S. (2012). “Discussing an uncertain future: End of Life Care conversations in COPD. A systematic literature review and narrative synthesis”. Thorax: 67; 777 – 780. Doi:10.1136/thoraxjnl-2012-201835
- Gwilliam B, Keeley V, Todd C, Gittins M, Roberts M, Kelly L, Barclay S, Stone P (2011). “Improving prognostication in advanced cancer: development of the Prognosis in Palliative care Study (PIPS) predictor models”. British Medical Journal: 343; 459 abridged version in print. Full text DOI: 10.1136/bmj.d4920
- Barclay S, Maher J (2010). “Palliative Care beyond cancer. Having the difficult conversations about the end of life”. British Medical Journal; 341: 653 – 655 abridged text in print. Full text BMJ 2010; 341: c4862.
- Preston NJ, Farquhar MC, Walshe CE, Stevinson C, Ewing G, Calman LA, Burden S, Brown Wilson C, Hopkinson JB, Todd C. Strategies to increase participant recruitment to research studies by healthcare professionals. Cochrane Database of Systematic Reviews 2012, Issue 9. Art. No.: MR000036. DOI: 10.1002/14651858.MR000036.
- Rocker G, Young J, Donahue M, Farquhar M, Simpson AC. Perspectives of patients, family caregivers, and physicians about the use of opioids for refractory dyspnea in advanced chronic obstructive pulmonary disease. Canadian Medical Association Journal 2012; 184 (9):E497-E504.
- Young J, Donahue M, Farquhar M, Simpson AC, Rocker G. Attitudes to Using Opioids to Treat Dyspnea in Advanced COPD: A Qualitative Study of Family Physicians and Respiratory Therapists. Canadian Family Physician 2012; 58:e401-7.
- Currow DC, Farquhar M, Ward AM, Crawford GB, Abernethy AP. Caregivers’ perceived adequacy of support in end-stage lung disease: results of a population survey. BMC Pulmonary Medicine 2011; 11:55.
- Farquhar M, Ewing G, Booth S. Using mixed methods to develop and evaluate complex interventions in palliative care research. Palliative Medicine 2011;25(8):748-757.