Cara Bailey

Professional tears: developing emotional intelligence around death and dying in emergency work

AIMS AND OBJECTIVES This paper explores how emergency nurses manage the emotional impact of death and dying in emergency work and presents a model for developing expertise in end-of-life care delivery. BACKGROUND Care of the dying, the deceased and the bereaved is largely conducted by nurses and nowhere is this more demanding than at the front door of the hospital, the Emergency Department. Whilst some nurses find end-of-life care a rewarding aspect of their role, others avoid opportunities to develop a relationship with the dying and bereaved because of the intense and exhausting nature of the associated emotional labour. DESIGN Qualitative study using unstructured observations of practice and semistructured interviews. METHODS Observation was conducted in a large Emergency Department over 12 months. We also conducted 28 in-depth interviews with emergency staff, patients with terminal illnesses and their relatives. RESULTS Emergency nurses develop expertise in end-of-life care giving by progressing through three stages of development: (1) investment of the self in the nurse-patient relationship, (2) management of emotional labour and (3) development of emotional intelligence. Barriers that prevent the transition to expertise contribute to occupational stress and can lead to burnout and withdrawal from practice. CONCLUSIONS Despite the emotional impact of emergency deaths, nurses who invest their therapeutic self into the nurse-patient relationship are able to manage the emotional labour of caring for the dying and their relatives through the development of emotional intelligence. They find reward in end-of-life care that ultimately creates a more positive experience for patients and their relatives. RELEVANCE TO CLINICAL PRACTICE The emergency nurse caring for the dying patient is placed in a unique and privileged position to make a considerable impact on the care of the patient and the experience for their family. This model can build awareness in managing the emotive aspects involved in care delivery and develop fundamental skills of nursing patients near the end of life.

Promoting active learning using Audience Response System in large bioscience classes

This paper considers the challenges of bioscience teaching and learning in pre-registration nurse education. Effective learning requires active student participation which is problematic when teaching large groups of students. New technologies, such as the audience response system (ARS), have been introduced to increase student participation and support them in the understanding of complex bioscience concepts. Within one university department, an evaluation was undertaken to identify the perceptions of pre-registration nurse students on the use of ARS in the teaching and learning of bioscience. Our findings concur with others that ARS increases student participation and aids in identifying misconceptions and in correcting them. Students found ARS very useful and wanted ARS to be used in additional modules too. Although ARS did not seem to motivate students to study adequately before attending the relevant sessions, it increased discussion among students and awareness of their level of knowledge compared to their peers. Further research is required to identify the effectiveness of ARS in the teaching and learning of bioscience and its impact on the performance of the students in their final assessments.

It's been quite a challenge: redesigning end-of-life care in acute hospitals.

OBJECTIVE This paper reports the findings of an interview-based study undertaken to investigate the introduction of end-of-life (EoL) care pathways in three acute trusts, as part of a larger project examining service redesign. The aim was to examine the barriers to and facilitators of change. METHOD Twenty-one in-depth qualitative interviews were conducted with staff working in three National Health Service (NHS) acute hospital trusts. These staff members were involved in end-of-life care, and their accounts were analyzed to identify the key issues when introducing service changes in these settings. RESULTS Thematic analysis revealed five major themes-two of which, leadership and facilitation, and education and training, indicate what needs to be in place if end-of-life care pathways are to be adopted by staff. However, the remaining three themes of difficult conversations, diagnosing dying, and communication across boundaries highlight particular areas of practice and organization that need to be addressed before end-of-life care in hospitals can be improved. SIGNIFICANCE OF RESULTS Organization of end-of-life care in acute hospitals is challenging, and care pathways provide a degree of guidance as to how services can be delivered. However, even when there is effective leadership at all levels of an organization and an extensive program of education for all staff support the use of care pathways, significant barriers to their introduction remain. These include staff anxieties concerning diagnosing dying and discussing dying and end-of-life care planning with patients and their families. It is hoped these findings can inform the development of the proposed new care plans which are set to replace end of life care pathways in England.

A team approach to recruitment in hospice research: engaging patients, close people and health professionals

Research is vital to the future development of hospice care. However, research in hospice settings is very challenging. This paper describes a case study of a successful multidisciplinary research team approach (MDRT) to the recruitment of participants (hospice patients, family members and health professionals) for a study in a hospice setting on the economic evaluation of end-of-life care. A successful recruitment plan includes three key strategies: identifying key members of the MDRT early in the research process; having a clear and constant communication stream; and creating an environment where all team members have a shared commitment to the research, all voices are heard and valued, and everyone contributes to the research aims. An MDRT approach will be helpful to guide the development of successful recruitment plans for academic-community research partnerships in the hospice setting.

‘The ICECAP-SCM tells you more about what I’m going through’: A think-aloud study measuring quality of life among patients receiving supportive and palliative care

Background: The ICECAP-Supportive Care Measure is a self-complete questionnaire developed to aid economic evaluation of supportive care interventions. Aim: To determine the feasibility of completing ICECAP–Supportive Care Measure alongside EQ-5D-5L and ICECAP-A (generic measures used in economic evaluation) among patients receiving hospice care, close persons and healthcare professionals. Design: Participants were asked to ‘think aloud’ while completing ICECAP-Supportive Care Measure and two other generic measures used in economic evaluation, EQ-5D-5L and ICECAP-A, and then participate in a semi-structured interview. From verbatim transcripts, five raters identified the frequency of errors in comprehension, retrieval, judgement and response. Qualitative data were analysed using constant comparison. Setting/participants: Eligible patients were identified from one UK hospice by a research nurse. Close persons and healthcare professionals were identified by the patient. In all, 72 semi-structured interviews were conducted with patients (n = 33), close persons (n = 22) and healthcare professionals (n = 17). Results: Patients and close persons reported that the ICECAP-Supportive Care Measure was most appropriate for measuring their quality of life. It appeared more meaningful, easier to complete and had fewest errors (3.9% among patients, 4.5% among close persons) compared to EQ-5D-5L (9.7% among patients, 5.5% among close persons). Healthcare professionals acknowledged the value of the ICECAP-Supportive Care Measure but had fewer errors in completing the EQ-5D-5L (3.5% versus 6.7%). They found it easier to complete because it focuses on observable health states. Conclusions: The ICECAP-Supportive Care Measure is feasible to use and perceived as appropriate for evaluating palliative care interventions. Healthcare professionals with limited knowledge of the patient who act as proxy completers may find the measure difficult to complete.

Measuring and Valuing Outcomes for Care at the End of Life: The Capability Approach

The capability approach is concerned with evaluating interventions in terms of their impact on a person’s well-being assessed as their ability to do and be things in life – their ‘capability’. It is increasingly being adopted to evaluate health and social care interventions in cases where the QALY would provide a partial assessment of outcomes. It is argued here that the case for incorporating broader outcomes is even more compelling in the context of care at the end of life. This chapter advocates a new framework for evaluating end-of-life care. It starts with the normative base of Amartya Sen’s capability approach and is influenced by evidence from the health and psychology literatures, as well as more intuitive ‘human’ experience from pioneers such as Cecily Saunders. It includes elements relating to both a good life and a good death and is unique in incorporating outcomes for persons close to the patient, acknowledging the emotional and physical demands and distress experienced both in the dying stage and through bereavement. This integrated capability-based framework aims to cope with the complexity of outcomes associated with health care, social care and supportive care. The result is a broad and pragmatic solution for evaluation, which can claim conceptual and ethical legitimacy.

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’.

Impaired mobility associated with an increased likelihood of death in children: a systematic review

Improved identification of children with an increased likelihood of death can support appropriate provision of integrated palliative care. This systematic review aims to consider immobility and the associated likelihood of death in children with disabilities, living in high-income countries. Two reviewers independently searched MEDLINE, Embase, Cochrane Library, OpenGrey and Science Citation Index (1990–2016) for studies that reported hazard ratios (HRs) and relative risk for the likelihood of death related to impaired mobility. Nine papers were included. Three studies reported functioning using the Gross Motor Function Classification Scale (GMFCS) and the remaining studies reported measures of functioning unique to the study. The strongest single prognostic factor for the likelihood of death was ‘lack of sitting ability at 24 months’, HR 44.4 (confidence interval (CI) 6.1–320.8) followed by GMFCS V HR 16.3 (CI 5.6–47.2) and 11.4 (CI 3.76–35.57) and ‘not able to cruise by 24 months’, HR 14.4 (CI 3.5–59.2). Immobility is associated with an increased risk of dying over study periods, but different referent groups make clinical interpretation challenging. Overall, the quality of evidence is moderate. The findings suggest that immobility can support identification of children who may benefit from integrated palliative care.

Development of a measure (ICECAP-Close Person Measure) through qualitative methods to capture the benefits of end-of-life care to those close to the dying for use in economic evaluation.

Background: End-of-life care affects both the patient and those close to them. Typically, those close to the patient are not considered within economic evaluation, which may lead to the omission of important benefits resulting from end-of-life care. Aim: To develop an outcome measure suitable for use in economic evaluation that captures the benefits of end-of-life care to those close to the dying. Design: To develop the descriptive system for the outcome measure, in-depth qualitative interviews were conducted with the participants and constant comparative analysis methods were used to develop a descriptive system for the measure. Participants: Twenty-seven individuals bereaved within the last 2 years or with a close-person currently receiving end-of-life care were purposively recruited into the study. Participants were recruited through newsletters, adverts, snowball sampling and a local hospice. Results: Twenty-seven individuals were recruited. A measure of capability with six attributes, each with five levels, was developed based on themes arising from the analysis. Attributes comprise the following: good communication with services, privacy and space to be with the loved one, emotional support, practical support, being able to prepare and cope and being free from emotional distress related to the condition of the decedent. Conclusion: This measure is designed to capture the benefits of end-of-life care to close-persons for use in economic evaluation. Further research should value the measure and develop methods for incorporating outcomes for close-persons into economic evaluation.

“THE ICECAP-SCM TELLS YOU MORE ABOUT WHAT I'M GOING THROUGH”—MEASURING THE QUALITY OF LIFE AMONGST PATIENTS RECEIVING SUPPORTIVE AND PALLIATIVE CARE

Introduction The ICECAP Supportive Care Measure (ICECAP-SCM) is a self-complete questionnaire developed to rate quality towards the end of life, particularly for economic evaluation. It measures a persons capability to experience a good life and death. Aim(s) and method(s) The study aimed to determine the feasibility of completing ICECAP-SCM alongside EQ-5D-5L and ICECAP-A (measures commonly used for economic evaluation). Each measure was completed by hospice patients (n=33), close persons (n=22) and healthcare professionals (HCPs n=17) in a ‘think aloud’ semi-qualitative interview. Five raters identified the frequency of error (e.g. misunderstanding, poor memory) from interview transcripts. Qualitative data were analysed using constant comparison, focusing on issues affecting response. Results Amongst patients, fewest errors were identified for ICECAP-SCM (3.9%) and the most for EQ5D-5L (9.7%). Amongst close persons there were also fewest errors in the ICECAP-SCM (4.5%) compared to ICECAP-A (5.5%) and EQ-5D-5L (5.5%). HCPs had most errors for ICECAP-SCM (6.7%) and fewest for EQ-5D-5L (3.5%). Qualitative data suggested that HCPs found EQ-5D-5L easiest to answer because it focuses on health states which could be directly observed. The ICECAP-SCM, appeared more meaningful to patients near the end of life and close persons; it was also easier to complete. Conclusion(s) This paper provides insight into the meaning of quality of life for those approaching death, those close to them and those involved in their care. Complexities in disease trajectories and adaptation to poor health make quality of end of life difficult to measure. The ICECAP-SCM captures the subtleties required and may be useful in evaluating future palliative care interventions.