Daniel Munday

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.

Palliative care in the community

UK programme shows promise but services also need adequate investment

Recognition by family members that relatives with neurodegenerative disease are likely to die within a year: A meta-ethnography

Objective: To synthesize evidence of family members recognizing that their relative is likely to die within the year, and identifying the need for palliative care. Design: A meta-ethnography of studies of family members in multiple sclerosis (MS), Parkinson’s disease (PD) and motor neuron disease (MND). Review methods: Systematic search in electronic databases; thematic synthesis guided by the principles of meta-ethnography, which is a method for thematic synthesis of qualitative studies. Results: Nine articles were included. The results of the synthesis identified two key themes. First, family members are intimately aware of changes in their relative’s health and well-being. Sub-themes include family member awareness of different and progressive stages of the disease, noticing deterioration, noticing decline in functional abilities and recognizing that their relative will die. The second key theme is dilemmas of being involved in prognostication. Sub-themes include family member ambivalence toward hearing about prognostication, health professionals not being knowledgeable of the disease and family reluctance to receive palliative care. Conclusions: Family members monitor and recognize changes in their relative with PD, MND and MS and in themselves. Thus, drawing on the expertise of family members may be a useful tool for prognostication.

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

Informed consent and palliative chemotherapy

Better information is needed about prognosis and treatment, along with decision aids to help patients interpret it

Qualitative critical incident study of patients’ experiences leading to emergency hospital admission with advanced respiratory illness

Objectives The high volume of emergency admissions to hospital is a challenge for health systems internationally. Patients with lung cancer and chronic obstructive pulmonary disease (COPD) are frequently admitted to hospital as emergency cases. While the frequency of emergency admission has been investigated, few studies report patient experiences, particularly in relation to the decision-making process prior to emergency admission. We sought to explore patient and carer experiences and those of their healthcare professionals in the period leading up to emergency admission to hospital. Setting 3 UK hospitals located in different urban and rural settings. Design Qualitative critical incident study. Participants 24 patients with advanced lung cancer and 15 with advanced COPD admitted to hospital as emergencies, 20 of their carers and 50 of the health professionals involved in the patients’ care. Results The analysis of patient, carer and professionals’ interviews revealed a detailed picture of the complex processes involved leading to emergency admission to hospital. 3 phases were apparent in this period: self-management of deteriorating symptoms, negotiated decision-making and letting go. These were dynamic processes, characterised by an often rapidly changing clinical condition, uncertainty and anxiety. Patients considered their options drawing on experience, current and earlier advice. Patients tried to avoid admission, reluctantly accepting it, albeit often with a sense of relief, as anxiety increased with worsening symptoms. Conclusions Patients with advanced respiratory illness, and their carers, try to avoid emergency admission, and use logical and complex decision-making before reluctantly accepting it. Clinicians and policy-makers need to understand this complex process when considering how to reduce emergency hospital admissions rather than focusing on identifying and labelling admissions as ‘inappropriate’.

Development and evaluation of a decision support tool for ambulance workers

Aims Recently completed research demonstrated that ambulance crews had received little training in managing terminally ill patients and showed marked variation in what they consider to be a valid DNAR or what they would accept as an advance care plan indicating that a patient would not want to be admitted to hospital. This research informed the development of an end of life care online education package. However, as it might be difficult for crews to call to mind such learning in an emergency situation, we also developed and are currently evaluating a decision support tool to assist ambulance crews in managing terminally ill patients. Methods End of life vignettes were presented to 21 ambulance clinicians in order to inform the development of the tool. A multidisciplinary expert group subsequently designed the tool. Suggestions for modification were made by two focus groups of ambulance clinicians. 60 ambulance clinicians have been trained to use the tool and currently involved in a survey to evaluate the effectiveness of the tool in practice. Results Data from the vignettes provided further confirmation of the lack of consistency among ambulance crews in their approach to decision making at the end of life, despite working in the same ambulance trust with standard policies and procedures. There was strong evidence that their decision-making is particularly risk averse leading to the likelihood that terminally ill patients would be admitted to hospital or have cardiopulmonary resuscitation following a cardiac arrest. Participants in the focus and education groups reported that the tool appeared to be helpful and appropriate. The tool is being currently tested and results from this evaluation will be available for presentation. Conclusion Lack of consistency in how ambulance crews deal with end of life situations highlights the importance of a decision support tool. Sponsor: NHS West Midlands.

Rural palliative care in North India: Rapid evaluation of a program using a realist mixed method approach

Context: Palliative care has not developed widely in rural North India. Since 2010, the Emmanuel Hospitals Association (EHA) has been developing a model of palliative care appropriate for this setting, based on teams undertaking home visits with the backup of outpatient and inpatient services. A project to further develop the model operated from 2012 to 2015 supported by funding from the UK. Aims: This study aims to evaluate the EHA palliative care project. Settings and Design: Rapid evaluation method using a mixed method realist approach at the five project hospital sites. Methods: An overview of the project was obtained by analyzing project documents and key informant interviews. Questionnaire data from each hospital were collected, followed by interviews with staff, patients, and relatives and observations of home visits and other activities at each site. Analysis: Descriptive analysis of quantitative and thematic analysis of qualitative data was undertaken. Each site was measured against the Indian Minimum Standards Tool for Palliative Care (IMSTPC). Results: Each team followed the EHA model, with local modifications. Services were nurse led with medical support. Eighty percent of patients had cancer. Staff demonstrated good palliative care skills and patients and families appreciated the care. Most essential IMSTPC markers were achieved but morphine licenses were available to only two teams. Remarkable synergy was emerging between palliative care and community health. Hospitals planned to fund palliative care through income from surgical services. Conclusions: Excellent palliative care appropriate for rural north India is delivered through the EHA model. It could be extended to other similar sites.

O-115 Developing a computerised search to help UK general practices identify more patients for advance care planning: A feasibility study

Background Many patients with advanced conditions are not identified for advance care planning because they are not seen as having “palliative” care needs. In some countries General Practice information technology systems can improve care by identifying patients with deteriorating health so that they can be considered for an ACP and their care reviewed more systematically and effectively. Aim The aim was to develop and test a computerised search of primary care records in routine clinical practice as a tool to improve patient identification for a palliative care approach. Methods An iterative process of search design and testing followed by implementation and extended testing of the search output in clinical practice. A three-phase feasibility study: developing a computerised search, determining its ability to identify patients with deteriorating health from any advanced condition, and assessing how primary care clinicians use the results to improve patient care. The setting was twelve primary care teams in two Health Boards in Scotland. Results The search identified 0.6% to 1.6% of patients in each practice who were not already on the practice palliative care register. Primary care clinicians judged that 30%–60% of these patients were at risk of dying or deterioration over the next 6–12 months. Discussion The most common action taken by GPs was to start an electronic “anticipatory care plan”, a specific Scottish form of advance care planning. Conclusion It is possible to significantly improve the identification of patients for ACP and palliative care needs assessment using a computerised search. Time-efficient systems were important as was a generic tool for anticipatory care planning not linked to ‘palliative’ care.

Co-ordination of generalist end of life care in the UK: a multi-site ethnographic study

Abstract Introduction and aims Appropriate, effective and timely generalist care for patients and their families towards the end of life is recognised as an essential component of high quality, equitable care. Improving coordination of care is one of the core objectives of the UK Department of Health End of Life Care Strategy. We aimed to identify the contextual complexities and challenges to well co-ordinated care delivery for people towards the end of life in different generalist settings. Method We used organisational ethnography among staff who were not specialist palliative care providers in three locations; an acute receiving unit, a respiratory outpatient clinic, and a primary care practice. The protocol included sustained interactions with health providers and interviews with patients and their carers over 9 months. The integrated datasets offer an understanding of how end-of-life care co-ordination is understood, initiated and conducted within patient trajectories and in the context of everyday healthcare provision. Results The patient-centred, long term focus of primary care drives individual and team activity and requires flexibility and collaboration. In the secondary care short-term, acute setting, role boundaries and a clearly defined process, in which time constraints are paramount, may result in a less personalised experience for patients. Conclusions Coordination of care for patients and their families with advanced progressive diseases undergoing emergency admissions or transition across settings is important. The level of coordination and the systems in place influences peoples experience of coordination of generalist settings. Further research regarding how collaboration influences coordination of care is required.