AIM: To develop an understanding of how nurses provide spiritual care to terminally ill patients in order to develop best practice.
BACKGROUND: Patients approaching the end of life (EoL) can experience suffering physically, emotionally, socially and spiritually. Nurses are responsible for assessing these needs and providing holistic care, yet are given little implementable, evidence-based guidance regarding spiritual care. Nurses internationally continue to express inadequacy in assessing and addressing the spiritual domain, resulting in spiritual care being neglected or relegated to the pastoral team.
DESIGN: Systematic literature review, following PRISMA guidelines.
METHODS: Nineteen electronic databases were systematically searched and papers screened. Quality was appraised using the Critical Appraisal Skills Programme qualitative checklist, and deductive thematic analysis, with a priori themes, was conducted.
RESULTS: Eleven studies provided a tripartite understanding of spiritual caregiving within the a priori themes: Nursing Spirit (a spiritual holistic ethos); the Soul of Care (the nurse-patient relationship) and the Body of Care (nurse care delivery). Ten of the studies involved palliative care nurses.
CONCLUSION: Nurses who provide spiritual care operate from an integrated holistic worldview, which develops from personal spirituality, life experience and professional practice of working with the dying. This worldview, when combined with advanced communication skills, shapes a relational way of spiritual caregiving that extends warmth, love and acceptance, thus enabling a patient's spiritual needs to surface and be resolved.
RELEVANCE TO CLINICAL PRACTICE: Quality spiritual caregiving requires time for nurses to develop: the personal, spiritual and professional skills that enable spiritual needs to be identified and redressed; nurse-patient relationships that allow patients to disclose and co-process these needs. Supportive work environments underpin such care. Further research is required to define spiritual care across all settings, outside of hospice, and to develop guidance for those involved in EoL care delivery.
BACKGROUND: Guidelines for economic evaluations often request that costs and outcomes beyond the patient are captured; this can include carers and also other affected parties. End-of-life care is one context where impacts of care spill over onto those other than patients, but there is little evidence about who should be included within economic evaluations.
OBJECTIVE: The purpose of this article was to examine (1) how many people are close to those at the end of life (2); their characteristics; and (3) what influences the network size at the end of life.
METHODS: In-depth interviews were conducted with 23 participants who were either recently bereaved or had somebody close to them currently receiving end-of-life care. Interviews were used in conjunction with hierarchical mapping to explore the network size and composition and influences upon these networks. Interviews were transcribed verbatim. Descriptive statistics were used to analyse the hierarchical maps and this information was combined with a constant comparative analysis of the qualitative data.
RESULTS: On average, close-person networks at the end of life contained eight individuals, three of whom were rated as being 'closest'. These were typically family members, although in a small number of cases non-family members were included amongst the closest individuals. There was variation in terms of network composition. Qualitative analyses revealed two key influences on network size: death trajectory (those with cognitive problems/diseases towards the end of life had smaller networks) and family size (larger families had larger networks).
CONCLUSIONS: The findings of this article have important implications for researchers wishing to include those affected by end-of-life care in an economic evaluation. Focussing on the three closest individuals would be a key starting point for economists seeking to capture spill-overs, whilst a truly societal perspective would require looking beyond proximal family members. This article further discusses the implications of including close persons in economic evaluations for decision makers.
BACKGROUND: Values used in economic evaluation are typically obtained from the general public, which is problematic when measures are to be used with people experiencing a life-course stage such as the end of life.
OBJECTIVE: To assess the feasibility of obtaining values for the ICECAP-Supportive Care Measure (SCM) from patients receiving advanced supportive care through a hospice.
METHODS: Participants completed eight best-worst scaling questions in a think-aloud interview to explain choices in different hypothetical end-of-life scenarios. Three independent raters identified errors in completion of the best-worst scaling task, and thematic analysis of associated qualitative data was undertaken to explore task difficulty and choices.
RESULTS: Twelve hospice patients were recruited. Most were able to complete the task and prioritise aspects of supportive care with either no difficulty (n=50%) or difficulty in just one of the eight scenarios (n=25%). Two patients (n=17%) were unable to comprehend the hypothetical nature of the task. The qualitative data confirmed there was good engagement with the task and identified the importance the respondents attached to maintaining dignity.
CONCLUSION: The findings suggest that people at the end of life will be able to complete a short, interviewer-administered, best-worst scaling task. To maximise engagement, it is recommended that the task is short and initiated with an example. Scenarios are best presented on show-cards in large print. A full evaluation of the ICECAP-SCM with those at the end of life is feasible.
BACKGROUND AND OBJECTIVES: Adaptive preferences occur when people subconsciously alter their views to account for the possibilities available to them. Adaptive preferences may be problematic where these views are used in resource allocation decisions because they may lead to underestimation of the true benefits of providing services. This research explored the nature and extent of both adaptation (changing to better suit the context) and adaptive preferences (altering preferences in response to restricted options) in individuals approaching the end of life (EoL).
METHODS: Qualitative data from 'thinkaloud' interviews with 33 hospice patients, 22 close persons and 17 health professionals were used alongside their responses to three health/well-being measures for use in resource allocation decisions: EQ-5D-5L (health status); ICECAP-A (adult capability); and ICECAP-SCM (Supportive Care Measure; EoL capability). Constant comparative analysis combined a focus on both verbalised perceptions across the three groups and responses to the measures.
RESULTS: Data collection took place between October 2012 and February 2014. Informants spoke clearly about how patients had adapted their lives in response to symptoms associated with their terminal condition. It was often seen as a positive choice to accept their state and adapt in this way but, at the same time, most patients were fully aware of the health and capability losses that they had faced. Self-assessments of health and capability generally appeared to reflect the pre-adaptation state, although there were exceptions.
CONCLUSION: Despite adapting to their conditions, the reference group for individuals approaching EoL largely remained a healthy, capable population, and most did not show evidence of adaptive preferences.
BACKGROUND: Teaching nursing students how to provide patient-centered end-of-life care is important and challenging. As traditional face-to-face classroom teaching is increasingly supplanted by digital technology, this provides opportunities for developing new forms of end-of-life care education. The aim of this article is to examine how a global classroom was developed using online technology to enhance nursing students' learning of end-of-life care in England and the United States.
METHOD: The PDSA (Plan-Do-Study-Act) quality improvement approach was used to guide the design and delivery of this curriculum innovation.
RESULTS: The global classroom enhanced the educational experience for students. Teaching needs to be inclusive, focused, and engaging; the virtual platform must be stable and support individual learning, and learning needs to be collaborative and authentic.
CONCLUSION: These findings can be used to inform the integration of similar approaches to end-of-life care education in other health care professional preparation programs.