'Talk to me': a mixed methods study on preferred physician behaviours during end-of-life communication from the patient perspective

Background
Despite the recognized importance of end-of-life (EOL) communication between patients and physicians, the extent and quality of such communication is lacking.

Objective
We sought to understand patient perspectives on physician behaviours during EOL communication.

Design
In this mixed methods study, we conducted quantitative and qualitative strands and then merged data sets during a mixed methods analysis phase. In the quantitative strand, we used the quality of communication tool (QOC) to measure physician behaviours that predict global rating of satisfaction in EOL communication skills, while in the qualitative strand we conducted semi-structured interviews. During the mixed methods analysis, we compared and contrasted qualitative and quantitative data.

Setting and Participants
Seriously ill inpatients at three tertiary care hospitals in Canada.

Results
We found convergence between qualitative and quantitative strands: patients desire candid information from their physician and a sense of familiarity. The quantitative results (n = 132) suggest a paucity of certain EOL communication behaviours in this seriously ill population with a limited prognosis. The qualitative findings (n = 16) suggest that at times, physicians did not engage in EOL communication despite patient readiness, while sometimes this may represent an appropriate deferral after assessment of a patient's lack of readiness.

Conclusions
Avoidance of certain EOL topics may not always be a failure if it is a result of an assessment of lack of patient readiness. This has implications for future tool development: a measure could be built in to assess whether physician behaviours align with patient readiness.

People with intellectual disabilities: promoting quality end of life care

Background: Internationally concerns have been highlighted about the quality of palliative care that people with intellectual disability receive. It has also been evidenced that people with intellectual disabilities are seldom referred to hospice and palliative care services. 

Aims: This study aimed to explore the experience of health and social care professionals in providing palliative care to people with intellectual disabilities. 

Methods An exploratory, qualitative design was used. A purposive sample of thirty health and social care professionals, working in intellectual disability and palliative care services, who had provided end-of-life care to adults with intellectual disabilities, were recruited to the study following informed consent. They were asked to reflect on a case scenario of a person with intellectual disability to whom they had provided end of life care. A semi-structured interview technique, with open questions and prompts, was used to explore their experiences and insights. The narrative from the case scenarios were content analysed using a recognised framework. 

Results: Three themes emerged from the data within the case scenarios: Identifying end of life care needs, meeting support needs and empowerment in partnership. Examples of good practice and issues in practice were apparent. 

Conclusion/ Discussion: This study contributes to the developing international evidence base to enhance end of life care for people with intellectual disabilities and provides further insights into this area of practice. Funder: HSC Research and Development Doctoral Fellowship Scheme

After the Liverpool Care Pathway clear guidance and support on end-of-life care is needed

Commentary on: Ramasamy Venkatasalu M, Whiting D, Cairnduff K. Life after the Liverpool Care Pathway (LCP): a qualitative study of critical care practitioners delivering end-of-life care. J Adv Nurs 2015;71:2108–18.

Music therapy for end-of-life care: an updated systematic review

Background: Music therapy during palliative and end-of-life care is well established and positive benefits for patients have been reported.
Aim: Assess the effectiveness of music therapy versus standard care alone or standard care in combination with other therapies for improving psychological, physiological and social outcomes among adult patients in any palliative care setting.
Data sources: In order to update an existing Cochrane systematic review, we searched MEDLINE, CINAHL, EMBASE, PsycINFO, CENTRAL, ClinicalTrials.gov register, and Current Controlled Trials register to identify randomised or quasi-randomised controlled trails published between 2009 and April 2015. Nine electronic music therapy journals were searched from 2009 until April 2015, along with reference lists and contact was made with key experts in music therapy. Only studies published in English were eligible for inclusion. Two reviewers independently screened titles, abstracts, assessed relevant studies for eligibility, extracted data and judged risk of bias for included studies. Disagreements were resolved through discussion with a third reviewer. Data were synthesised in Revman using the random effects model. Heterogeneity was assessed using l2.
Results: Three studies were included in the review. Findings suggest music therapy may be effective for helping to reduce pain in palliative care patients (standard mean deviation (SMD) = -0.42, 95% CI -0.68 to -0.17, P = 0.001).
Conclusions: Available evidence did not support the use of music therapy to improve overall quality-of-life in palliative care. While this review suggests music therapy may be effective for reducing pain, this is based on studies with a high risk of bias. Further high quality research is required.

Healthcare Staff Experience of Providing End-of-Life Care to Children: A Mixed Method Review

Background: Staff who provide end-of-life care to children not only have to deal with their own sense of loss, but also that of bereaved families. There is a dearth of knowledge on how they cope with these challenges.
Aim: The aim of this review is to explore the experiences of health care professionals who provide end-of-life care to children in order to inform the development of interventions to support them, thereby improving the quality of paediatric care for both children and their families.
Data sources: Searches included CINAHL, MEDLINE, Web of Science, EMBASE, PsychINFO, and The Cochrane Library in June 2015, with no date restrictions. Additional literature was uncovered from searching reference lists of relevant studies, along with contacting experts in the field of paediatric palliative care.
Design: This was a systematic mixed studies review. Study selection, appraisal and data extraction were conducted by two independent researchers. Integrative thematic analysis was used to synthesise the data.
Results: The 16 qualitative, six quantitative, and eight mixed-method studies identified included healthcare professionals in a range of settings. Key themes identified rewards and challenges of providing end-of-life care to children, the impact on staff’s personal and professional lives, coping strategies, and key approaches to help support staff in their role.
Conclusions: Education focusing on the unique challenges of providing end-of-life care to children and the importance of self-care, along with timely multidisciplinary debriefing are key strategies for improving healthcare staffs’ experiences, and as such the quality of care they provide.

A Systematic Review of End-of-Life Visual Impairment in Open-Angle Glaucoma: An Epidemiological Autopsy

PURPOSE: Glaucoma patients are still at risk of becoming blind. It is of clinical significance to determine the risk of blindness and its causes to prevent its occurrence. This systematic review estimates the number of treated glaucoma patients with end-of-life visual impairment (VI) and blindness and the factors that are associated with this.

METHODS: A systematic literature search in relevant databases was conducted in August 2014 on end-of-life VI. A total of 2574 articles were identified, of which 5 on end-of-life VI. Several data items were extracted from the reports and presented in tables.

RESULTS: All studies had a retrospective design. A considerable number of glaucoma patients were found to be blind at the end of their life; with up to 24% unilateral and 10% bilateral blindness. The following factors were associated with blindness: (1) baseline severity of visual field loss: advanced stage of glaucoma or substantial visual field loss at the initial visit; (2) factors influencing progression: fluctuation of intraocular pressure (IOP) during treatment, presence of pseudoexfoliation, poor patient compliance, higher IOP; (3) longer time period: longer duration of disease and older age at death because of a longer life expectancy; and (4) coexistence of other ocular pathology.

CONCLUSIONS: Further prevention of blindness in glaucoma patients is needed. To reach this goal, it is important to address the risk factors for blindness identified in this review, especially those that can be modified, such as advanced disease at diagnosis, high and fluctuating IOP, and poor compliance.

Initiating advance care planning on end-of-life issues in dementia: Ambiguity among UK and Dutch physicians

Background
In dementia, advance care planning (ACP) of end-of-life issues may start as early as possible in view of the patient’s decreasing ability to participate in decision making. We aimed to assess whether practicing physicians in the Netherlands and the United Kingdom who provide most of the end-of-life care, differ in finding that ACP in dementia should start at diagnosis.

Methods
In a cross-sectional study, we surveyed 188 Dutch elderly care physicians who are on the staff of nursing homes and 133 general practitioners from Northern Ireland. We compared difference by country in the outcome (perception of ACP timing), rated on a 1–5 agreement scale. Regression analyses examined whether a country difference can be explained by contrasts in demographics, presence, exposure and role perceptions.

Results
There was wide variability in agreement with the initiation of ACP at dementia diagnosis, in particular in the UK but also in the Netherlands (60.8% agreed, 25.3% disagreed and 14.0% neither agreed, nor disagreed). Large differences in physician characteristics (Dutch physicians being more present, exposed and adopting a stronger role perception) hardly explained the modest country difference. The perception that the physician should take the initiative was independently associated with agreeing with ACP at diagnosis.

Conclusions
There is considerable ambiguity about initiating ACP in dementia at diagnosis among physicians practicing in two different European health care systems and caring for different patient populations. ACP strategies should accommodate not only variations in readiness to engage in ACP early among patient and families, but also among physicians.

Towards the End of Life: an In-depth Exploration of the Role of Admiral Nursing in Dementia Care (Innovative Practice)

There are approximately 150 Admiral Nurses in the UK who work alongside other health and social care professionals to support people with dementia and their family carers. However, the stigma of the disease and the lack of recognition that dementia is a life limiting illness have led to neglect in addressing the end of life challenges. The small in-depth study reported here aimed to add to an extremely limited formal evidence base for the effectiveness of this approach and to develop a greater understanding of the range of knowledge and skills required of them in ensuring they are better able to support families in the later stages of the illness. Findings focus on the experiences of family carers, the impact of performing the Admiral Nurse role and the use of qualitative measures in this setting.