General practitioners' experiences of emergency care and treatment planning in England: a focus group study.

BACKGROUND: Emergency Care and Treatment Plans are recommended for all primary care patients in the United Kingdom who are expected to experience deterioration of their health. The Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) was developed to integrate resuscitation decisions with discussions about wider goals of care. It summarises treatment recommendations discussed and agreed between patients and their clinicians for a future emergency situation and was designed to meet the needs of different care settings. Our aim is to explore GPs' experiences of using ReSPECT and how it transfers across the primary care and secondary care interface. METHODS: We conducted five focus groups with GPs in areas being served by hospitals in England that have implemented ReSPECT. Participants were asked about their experience of ReSPECT, how they initiate ReSPECT-type conversations, and their experiences of ReSPECT-type recommendations being communicated across primary and secondary care. Focus groups were transcribed and analysed using Thematic Analysis. RESULTS: GPs conceptualise ReSPECT as an end of life planning document, which is best completed in primary care. As an end of life care document, completing ReSPECT is an emotional process and conversations are shaped by what a 'good death' is thought to be. ReSPECT recommendations are not always communicated or transferable across care settings. A focus on the patient's preferences around death, and GPs' lack of specialist knowledge, could be a barrier to completion of ReSPECT that is transferable to acute settings. CONCLUSION: Conceptualising ReSPECT as an end of life care document suggests a difference in how general practitioners understand ReSPECT from its designers. This impacts on the transferability of ReSPECT recommendations to the hospital setting.

Palliative opioid use, palliative sedation and euthanasia: reaffirming the distinction.

We read with interest the extended essay published from Riisfeldt and are encouraged by an empirical ethics article which attempts to ground theory and its claims in the real world. However, such attempts also have real-world consequences. We are concerned to read the paper's conclusion that clinical evidence weakens the distinction between euthanasia and normal palliative care prescribing. This is important. Globally, the most significant barrier to adequate symptom control in people with life-limiting illness is poor access to opioid analgesia. Opiophobia makes clinicians reluctant to prescribe and their patients reluctant to take opioids that might provide significant improvements in quality of life. We argue that the evidence base for the safety of opioid prescribing is broader than that presented, restricting the search to palliative care literature produces significant bias as safety experience and literature for opioids and sedatives exists in many fields. This is not acknowledged in the synthesis presented. By considering additional evidence, we reject the need for agnosticism and reaffirm that palliative opioid prescribing is safe. Second, palliative sedation in a clinical context is a poorly defined concept covering multiple interventions and treatment intentions. We detail these and show that continuous deep palliative sedation (CDPS) is a specific practice that remains controversial globally and is not considered routine practice. Rejecting agnosticism towards opioids and excluding CDPS from the definition of routine care allows the rejection of Riisfeldt's headline conclusion. On these grounds, we reaffirm the important distinction between palliative care prescribing and euthanasia in practice.

'End of life could be on any ward really': A qualitative study of hospital volunteers' end-of-life care training needs and learning preferences.

BACKGROUND: Over half of all deaths in Europe occur in hospital, a location associated with many complaints. Initiatives to improve inpatient end-of-life care are therefore a priority. In England, over 78,000 volunteers provide a potentially cost-effective resource to hospitals. Many work with people who are dying and their families, yet little is known about their training in end-of-life care. AIMS: To explore hospital volunteers' end-of-life care training needs and learning preferences, and the acceptability of training evaluation methods. DESIGN: Qualitative focus groups. SETTING/PARTICIPANTS: Volunteers from a large teaching hospital were purposively sampled. RESULTS: Five focus groups were conducted with 25 hospital volunteers (aged 19-80 years). Four themes emerged as follows: preparation for the volunteering role, training needs, training preferences and evaluation preferences. Many described encounters with patients with life-threatening illness and their families. Perceived training needs in end-of-life care included communication skills, grief and bereavement, spiritual diversity, common symptoms, and self-care. Volunteers valued learning from peers and end-of-life care specialists using interactive teaching methods including real-case examples and role plays. A chance to 'refresh' training at a later date was suggested to enhance learning. Evaluation through self-reports or observations were acceptable, but ratings by patients, families and staff were thought to be pragmatically unsuitable owing to sporadic contact with each. CONCLUSION: Gaps in end-of-life care training for hospital volunteers indicate scope to maximise on this resource. This evidence will inform development of training and evaluations which could better enable volunteers to make positive, cost-effective contributions to end-of-life care in hospitals.

Primary care physicians' educational needs and learning preferences in end of life care: A focus group study in the UK.

BACKGROUND: Primary care physicians (General Practitioners (GPs)) play a pivotal role in providing end of life care (EoLC). However, many lack confidence in this area, and the quality of EoLC by GPs can be problematic. Evidence regarding educational needs, learning preferences and the acceptability of evaluation methods is needed to inform the development and testing of EoLC education. This study therefore aimed to explore GPs' EoLC educational needs and preferences for learning and evaluation. METHODS: A qualitative focus group study was conducted with qualified GPs and GP trainees in the UK. Audio recordings were transcribed and analysed thematically. Expert review of the coding frame and dual coding of transcripts maximised rigour. RESULTS: Twenty-eight GPs (10 fully qualified, 18 trainees) participated in five focus groups. Four major themes emerged: (1) why education is needed, (2) perceived educational needs, (3) learning preferences, and (4) evaluation preferences. EoLC was perceived as emotionally and clinically challenging. Educational needs included: identifying patients for palliative care; responsibilities and teamwork; out-of-hours care; having difficult conversations; symptom management; non-malignant conditions; and paediatric palliative care. Participants preferred learning through experience, working alongside specialist palliative care staff, and discussion of real cases, to didactic methods and e-learning. 360° appraisals and behavioural assessment using videoing or simulated interactions were considered problematic. Self-assessment questionnaires and patient and family outcome measures were acceptable, if used and interpreted correctly. CONCLUSIONS: GPs require education and support in EoLC, particularly the management of complex clinical care and counselling. GPs value mentoring, peer-support, and experiential learning alongside EoLC specialists over formal training.

Mapping hydrologic alteration and ecological consequences in stream reaches of the conterminous United States.

Environmental flows are critical for balancing societal water needs with that of riverine ecosystems; however, data limitations often hinder the development of predictive relationships between anthropogenic modifications to streamflow regimes and ecological responses - these relationships are the basis for setting regional water policy standards for rivers. Herein, we present and describe a comprehensive dataset of modeled hydrologic alteration and consequences for native fish biodiversity, both mapped at the stream-reach resolution for the conterminous U.S. Using empirical observations of reference conditions and anthropogenically altered streamflow at over 7000 stream gauges, we developed a predictive model of hydrologic alteration, which was extended to >2.6 million stream reaches. We then used a previous nationwide assessment of ecological responses to hydrologic alteration to predict fish biodiversity loss in stream reaches resulting from streamflow modification. Validation efforts suggested hydrologic alteration models had satisfactory performance, whereas modeled ecological responses were susceptible to compounded errors. The dataset could ameliorate regional data deficits for setting environmental flow standards while providing tools for prioritizing streamflow protection or restoration.

Anticipatory prescribing in community end-of-life care in the UK and Ireland during the COVID-19 pandemic: online survey.

BACKGROUND: Anticipatory prescribing (AP) of injectable medications in advance of clinical need is established practice in community end-of-life care. Changes to prescribing guidelines and practice have been reported during the COVID-19 pandemic. AIMS AND OBJECTIVES: To investigate UK and Ireland clinicians' experiences concerning changes in AP during the COVID-19 pandemic and their recommendations for change. METHODS: Online survey of participants at previous AP national workshops, members of the Association for Palliative Medicine of Great Britain and Ireland and other professional organisations, with snowball sampling. RESULTS: Two hundred and sixty-one replies were received between 9 and 19 April 2020 from clinicians in community, hospice and hospital settings across all areas of the UK and Ireland. Changes to AP local guidance and practice were reported: route of administration (47%), drugs prescribed (38%), total quantities prescribed (35%), doses and ranges (29%). Concerns over shortages of nurses and doctors to administer subcutaneous injections led 37% to consider drug administration by family or social caregivers, often by buccal, sublingual and transdermal routes. Clinical contact and patient assessment were more often remote via telephone or video (63%). Recommendations for regulatory changes to permit drug repurposing and easier community access were made. CONCLUSIONS: The challenges of the COVID-19 pandemic for UK community palliative care has stimulated rapid innovation in AP. The extent to which these are implemented and their clinical efficacy need further examination.

Conscientious objection and physician-assisted suicide: a viable option in the UK?

Conscience objection is a proposed way of ensuring that medical practitioners who object to physician-assisted suicide may avoid having to be involved in such a procedure if this is legalised. This right on the part of healthcare professionals already exists in certain circumstances. This paper examines the ethical and legal grounds for conscientious objection for medical professionals and shows how it is heavily criticised in circumstances where it is already used. The paper comes to the conclusion that as the grounds and application of conscience objection are no longer as widely accepted, its future application in any legislation can be called into question.

What are the main palliative care symptoms and concerns of older people with multimorbidity?-a comparative cross-sectional study using routinely collected Phase of Illness, Australia-modified Karnofsky Performance Status and Integrated Palliative Care Outcome Scale data.

BACKGROUND: Older people with multimorbidities are projected to be the main recipients of palliative care in the coming decades. However, because their specific palliative care needs are poorly understood and service response is underdeveloped, older people with multimorbidity are less likely to receive palliative care. Innovative specialist palliative care services are developing to address this gap, but with little underpinning evidence. Therefore the aim of this paper is to describe the clinical characteristics, symptoms and other concerns of older people with multi-morbidity referred to a new community palliative care service; and to explore possible implications for service delivery by comparing this service population with people receiving standard community-based specialist palliative care. METHODS: Cross-sectional study comparing routinely collected demographic, clinical, and point-of-care patient-level outcomes data [Phase of Illness, Australia-modified Karnofsky Performance Status (AKPS) and Integrated Palliative care Outcome Scale] across an innovative palliative service-Bromley Care Coordination (BCC) with patients in the standard specialist community palliative care (SC). Composite case studies of BCC patients provide more in-depth illustration of results. RESULTS: Compared with patients who received Standard Care, patients seen by BCC were more often female, older and with a non-malignant diagnosis (16% cancer in BCC versus 72% cancer in SC). Patients across the two services had a similar symptom profile at first contact in the pairwise complete case analysis. SC patients reported more frequently pain, nausea, vomiting, constipation, anxiety and family concern, and BCC patients reported more frequently mobility concerns. Functional status was lower for BCC patients on entry into the service (AKPS 40 median versus SC AKPS of 50). BCC patients stayed longer in each phase of illness (56 days median versus SC 41 days), with a more unpredictable subsequent phase. CONCLUSIONS: The population of older people with multimorbidity has not been routinely recognized as having specialist palliative care needs. However, this evaluation shows that, at first contact, the symptoms and concerns across both service populations was surprisingly similar. Nevertheless, patterns of symptoms may differ between populations over time. Longitudinal prospective data are needed to examine these changes overtime, and the relationship with multimorbidity.

A Systematic Review of End-of-Life Care Communication Skills Training for Generalist Palliative Care Providers: Research Quality and Reporting Guidance.

CONTEXT: End-of-life care (EoLC) communication skills training for generalist palliative care providers is recommended in policy guidance globally. Although many training programs now exist, there has been no comprehensive evidence synthesis to inform future training delivery and evaluation. OBJECTIVES: To identify and appraise how EoLC communication skills training interventions for generalist palliative care providers are developed, delivered, evaluated, and reported. METHODS: Systematic review. Ten electronic databases (inception to December 2015) and five relevant journals (January 2004 to December 2015) were searched. Studies testing the effectiveness of EoLC communication skills training for generalists were included. Two independent authors assessed study quality. Descriptive statistics and narrative synthesis are used to summarize the findings. RESULTS: From 11,441 unique records, 170 reports were identified (157 published, 13 unpublished), representing 160 evaluation studies of 153 training interventions. Of published papers, eight were of low quality, 108 medium, and 41 high. Few interventions were developed with service user involvement (n = 7), and most were taught using a mixture of didactics (n = 123), reflection and discussion (n = 105), and role play (n = 86). Evaluation designs were weak: <30% were controlled, <15% randomized participants. Over half (n = 85) relied on staff self-reported outcomes to assess effectiveness, and 49% did not cite psychometrically validated measures. Key information (e.g., training duration, participant flow) was poorly reported. CONCLUSIONS: Despite a proliferation of EoLC communication skills training interventions in the literature, evidence is limited by poor reporting and weak methodology. Based on our findings, we present a CONSORT statement supplement to improve future reporting and encourage more rigorous testing.

The Effect of Communication Skills Training for Generalist Palliative Care Providers on Patient-Reported Outcomes and Clinician Behaviors: A Systematic Review and Meta-analysis.

CONTEXT: As most end-of-life care is provided by health care providers who are generalists rather than specialists in palliative care, effective communication skills training for generalists is essential. OBJECTIVES: To determine the effect of communication training interventions for generalist palliative care providers on patient-reported outcomes and trainee behaviors. METHODS: Systematic review from searches of 10 databases to December 2015 (MEDLINE, EMBASE, PsycINFO, ERIC, CINAHL, CENTRAL, Web of Science, ICTRP, CORDIS, and OpenGrey) plus hand searching. Randomized controlled trials of training interventions intended to enhance generalists' communication skills in end-of-life care were included. Two authors independently assessed eligibility after screening, extracted data, and graded quality. Data were pooled for meta-analysis using a random-effects model. PRISMA guidelines were followed. RESULTS: Nineteen of 11,441 articles were eligible, representing 14 trials. Eleven were included in meta-analyses (patients n = 3144, trainees n = 791). Meta-analysis showed no effect on patient outcomes (standardized mean difference [SMD] = 0.10, 95% CI -0.05 to 0.24) and high levels of heterogeneity (chi-square = 21.32, degrees of freedom [df] = 7, P = 0.003; I2 = 67%). The effect on trainee behaviors in simulated interactions (SMD = 0.50, 95% CI 0.19-0.81) was greater than in real patient interactions (SMD = 0.21, 95% CI -0.01 to 0.43) with moderate heterogeneity (chi-square = 8.90, df = 5, P = 0.11; I2 = 44%; chi-square = 5.96, df = 3, P = 0.11; I2 = 50%, respectively). Two interventions with medium effects on showing empathy in real patient interactions included personalized feedback on recorded interactions. CONCLUSIONS: The effect of communication skills training for generalists on patient-reported outcomes remains unclear. Training can improve clinicians' ability to show empathy and discuss emotions, at least in simulated consultations. Personalized feedback on recorded patient interactions may be beneficial. REGISTRATION NUMBER: CRD42014014777.

Improving confidence and competence of healthcare professionals in end-of-life care: an evaluation of the 'Transforming End of Life Care' course at an acute hospital trust.

BACKGROUND: UK policymakers, clinicians and public wish to see improvements in end-of-life care (EoLC). However, healthcare professionals' skills and knowledge to deliver high-quality care are often lacking. Since May 2012, palliative care staff in an inner-city tertiary hospital have run a 2-day Transforming End of Life Care (TEoLC) course to improve EoLC confidence, and competence among hospital and community staff. AIM: To evaluate course participants' self-rated confidence, competence and knowledge of EoLC topics. EVALUATION DESIGN: A before-and-after design using self-completion questionnaires, precourse and postcourse. 14 self-assessment questions examined confidence, understanding and knowledge of EoLC topics. Mean change scores and paired t tests were calculated and free-text responses analysed thematically. PARTICIPANTS: 236 staff members completed the course between May 2012 and April 2014. 42% worked in hospitals and 55% in the community; the most frequent staff roles were qualified nurses (49%), senior nurses (16%) and general practitioners (15%). RESULTS: All 14 self-assessment topics improved significantly (p<0.001); most improved was 'understanding and implementing Fast Track discharge'. Qualitative data showed increased knowledge and confidence in EoLC, particularly in communication, commitment to team work and holistic care. Overall, 217 (92%) participants would recommend the course and 215 (98%) indicated it would influence their practice. CONCLUSIONS: The TEoLC course improved participants' self-rated confidence, competence and knowledge in EoLC. Findings have utility beyond the UK in light of the international policy recommendations to improve the palliative care skills of generalist healthcare providers.