Mila Petrova

Exploring preferences for place of death with terminally ill patients: qualitative study of experiences of general practitioners and community nurses in England

Objective To explore the experiences and perceptions of general practitioners and community nurses in discussing preferences for place of death with terminally ill patients. Design Qualitative study using semistructured interviews and thematic analysis. Participants 17 general practitioners and 19 nurses (16 district nurses, three clinical nurse specialists). Setting 15 general practices participating in the Gold Standards Framework for palliative care from three areas in central England with differing socio-geography. Practices were selected on the basis of size and level of adoption of the standards framework. Results All interviewees bar one had experience of discussing preferred place of death with terminally ill patients. They reported that preferences for place of death frequently changed over time and were often ill defined or poorly formed in patients’ minds. Preferences were often described as being co-created in discussion with the patient or, conversely, inferred by the health professional without direct questioning or receiving a definitive answer from the patient. This inherent uncertainty challenged the practicability, usefulness, and value of recording a definitive preference. The extent to which the assessment of enabling such preferences can be used as a proxy for the effectiveness of palliative care delivery is also limited by this uncertainty. Generally, interviewees did not find discussing preferred place of death an easy area of practice, unless the patient broached the subject or led the discussions. Conclusions Further research is needed to enable development of appropriate training and support for primary care professionals. Better understanding of the importance of place of death to patients and their carers is also needed.

A national facilitation project to improve primary palliative care: impact of the Gold Standards Framework on process and self-ratings of quality

Background: Improving quality of end-of-life care is a key driver of UK policy. The Gold Standards Framework (GSF) for Palliative Care aims to strengthen primary palliative care through facilitating implementation of systematic clinical and organisational processes. Objectives: To describe the general practices that participated in the GSF programme in 2003–5 and the changes in process and perception of quality that occurred in the year following entry into the programme, and to identify factors associated with the extent of change. Methods: Participating practices completed a questionnaire at baseline and another approximately 12 months later. Data were derived from categorical questions about the implementation of 35 organisational and clinical processes, and self-rated assessments of quality, associated with palliative care provision. Participants: 1305 practices (total registered population almost 10 million). Follow-up questionnaire completed by 955 (73.2%) practices (after mean (SD) 12.8 (2.8) months; median 13 months). Findings: Mean increase in total number of processes implemented (maximum  = 35) was 9.6 (95% CI 9.0 to 10.2; p<0.001; baseline: 15.7 (SD 6.4), follow-up: 25.2 (SD 5.2)). Extent of change was largest for practices with low baseline scores. Aspects of process related to coordination and communication showed the greatest change. All dimensions of quality improved following GSF implementation; change was highest for the “quality of palliative care for cancer patients” and “confidence in assessing, recording and addressing the physical and psychosocial areas of patient care”. Conclusion: Implementation of the GSF seems to have resulted in substantial improvements in process and quality of palliative care. Further research is required of the extent to which this has enhanced care (physical, practical and psychological outcomes) for patients and carers.

Crash course in EPaCCS (Electronic Palliative Care Coordination Systems): 8 years of successes and failures in patient data sharing to learn from

Background Electronic Palliative Care Coordination Systems (EPaCCS) are Englands pre-eminent initiative in enabling advance care planning and improved communication and coordination at the end of life. EPaCCS have been under development for 8 years after being proposed, as Locality Registers, in the 2008 End of Life Care Strategy for England. EPaCCS are electronic registers or tools and processes for sharing data which aim to enable access to information about dying patients. Striking outcomes have been reported around EPaCCS, such as 77.8% of ‘Coordinate My Care’ patients dying in their preferred place. EPaCCS have, however, been extremely challenging to develop and implement, with many projects remaining continuously ‘under development’ or folding. They also continue to be suboptimally integrated with other data sharing initiatives. Rigorous research is non-existent. Discussion points We discuss the current EPaCCS landscape and way forward. We summarise key facts concerning the availability, uptake, outcomes and costs of EPaCCS. We outline 5 key challenges (scope of projects, unrealistic expectations set by existing guidance, the discrepancy between IT realities in healthcare and our broader lives, information governance and ‘death register’ associations) and 6 key drivers (robust concept, striking outcomes, national support and strong clinical leadership, clinician commitment, education and funding). Conclusions The priorities for advancing EPaCCS we propose include linking to other work streams and reframing the concept, potentially making it less ‘end of life’, overview of current EPaCCS and lessons learnt, continuing work on information standards, rethinking of national funding and new levels of individual and community involvement.

Palliative care in humanitarian crises: always something to offer

Richard A. Powell MSc, Director, MWAPO Health Development Group, Nairobi, Kenya Lisa Schwartz PhD, Arnold L. Johnson Chair in Health Care Ethics, Faculty of Health Sciences, McMaster University, Hamilton, Ontario, Canada Elysée Nouvet PhD, Post-Doctoral Fellow in Humanitarian Healthcare Ethics, Department of Clinical Epidemiology & Biostatistics, McMaster University, Hamilton, Ontario, Canada Brett Sutton MBBS, Public Health Registrar, Burnet Institute, Melbourne, Australia Mila Petrova PhD, Research Associate, Primary Care Unit, Department of Public Health and Primary Care, University of Cambridge, Cambridge, UK Joan Marston B Soc Sc, International consultant for childrens palliative care, Assagay, South Africa Daniel Munday PhD, Consultant in Palliative Medicine and Health Services Research, International Nepal Fellowship, Kathmandu, Nepal