Parkinson's disease and palliative care: a quality of care Delphi study.

OBJECTIVES: Extending palliative care services to those with long-term neurological conditions is a current aim of UK health policy. Lack of holistic guidelines for palliative and end-of-life care, and differing models of service provision, has resulted in heterogeneity in care access and quality. There is a need for evidence-based standards of care to audit Parkinson's services and drive improvements. METHODS: A two-stage Delphi process was used to achieve consensus on statements that define quality standards in palliative care for patients with Parkinson's disease (PD). An expert panel was selected to comprise healthcare professionals, patients and carers based in the UK; this panel evaluated the statements via a Delphi survey. Quantitative and qualitative analysis of the results informed modifications between the Delphi rounds. RESULTS: A final set of 16 statements was produced, reflecting aspirational standards of palliative care in PD. These statements, split into four domains ('Structures and processes of care', 'Preparing for the end of life', ' Care in the last weeks of life' and 'Care in the last days of life') underline the importance of joint working between generalist and specialist services, individualised care and early and regular advance care planning. CONCLUSIONS: The Delphi process has established a set of standards which can be integrated within and guide services, helping to improve the quality and equality of care. Further work remains to establish the effectiveness of different models of service provision, including the implementation of keyworkers and telemedicine.

Implementing advance care planning in heart failure: a qualitative study of primary healthcare professionals.

BACKGROUND: Advance care planning (ACP) can improve the quality of life of patients suffering from heart failure (HF). However, primary care healthcare professionals (HCPs) find ACP difficult to engage with and patient care remains suboptimal. AIM: To explore the views of primary care HCPs on how to improve their engagement with ACP in HF. DESIGN AND SETTING: A qualitative interview study with GPs and primary care nurses in England. METHOD: Semi-structured interviews were conducted with a purposive sample of 24 primary care HCPs. Data were analysed using reflexive thematic analysis. RESULTS: Three main themes were constructed from the data: ACP as integral to holistic care in HF; potentially limiting factors to the doctor-patient relationship; and approaches to improve professional performance. Many HCPs saw the benefits of ACP as synonymous with providing holistic care and improving patients' quality of life. However, some feared that initiating ACP could irrevocably damage their doctor-patient relationship. Their own fear of death and dying, a lack of disease-specific communication skills, and uncertainty about the right timing were significant barriers to ACP. To optimise their engagement with ACP in HF, HCPs recommended better clinician-patient dialogue through question prompts, enhanced shared decision-making approaches, synchronising ACP across medical specialties, and disease-specific training. CONCLUSION: GPs and primary care nurses are vital to deliver ACP for patients suffering from HF. HCPs highlighted important areas to improve their practice and the urgent need for investigations into better clinician-patient engagement with ACP.

Hospice at Home services in England: a national survey.

OBJECTIVE: Hospice at Home (HAH) services aim to enable patients to be cared for and die at home, if that is their choice and achieve a 'good death'. A national survey, in 2017, aimed to describe and compare the features of HAH services and understand key enablers to service provision. METHODS: Service managers of adult HAH services in the 'Hospice UK' and National Association for Hospice at Home directories within England were invited to participate. Information on service configuration, referral, staffing, finance, care provision and enablers to service provision were collected by telephone interview. RESULTS: Of 128 services invited, 70 (54.7%) provided data. Great diversity was found. Most services operated in mixed urban/rural (74.3%) and mixed deprivation (77.1%) areas and provided hands-on care (97.1%), symptom assessment and management (91.4%), psychosocial support (94.3%) and respite care (74.3%). Rapid response (within 4 hours) was available in 65.7%; hands-on care 24 hours a day in 52.2%. Charity donations were the main source of funding for 71.2%. Key enablers for service provision included working with local services (eg, district nursing, general practitioner services), integrated health records, funding and anticipatory care planning. Access to timely medication and equipment was critical. CONCLUSION: There is considerable variation in HAH services in England. Due to this variation it was not possible to categorise services into delivery types. Services work to supplement local care using a flexible approach benefitting from integration and funding. Further work defining service features related to patient and/or carer outcomes would support future service development.

Redefining Palliative Care-A New Consensus-Based Definition.

CONTEXT: The International Association for Hospice and Palliative Care developed a consensus-based definition of palliative care (PC) that focuses on the relief of serious health-related suffering, a concept put forward by the Lancet Commission Global Access to Palliative Care and Pain Relief. OBJECTIVE: The main objective of this article is to present the research behind the new definition. METHODS: The three-phased consensus process involved health care workers from countries in all income levels. In Phase 1, 38 PC experts evaluated the components of the World Health Organization definition and suggested new/revised ones. In Phase 2, 412 International Association for Hospice and Palliative Care members in 88 countries expressed their level of agreement with the suggested components. In Phase 3, using results from Phase 2, the expert panel developed the definition. RESULTS: The consensus-based definition is as follows: Palliative care is the active holistic care of individuals across all ages with serious health-related suffering due to severe illness and especially of those near the end of life. It aims to improve the quality of life of patients, their families and their caregivers. The definition includes a number of bullet points with additional details as well as recommendations for governments to reduce barriers to PC. CONCLUSION: Participants had significantly different perceptions and interpretations of PC. The greatest challenge faced by the core group was trying to find a middle ground between those who think that PC is the relief of all suffering and those who believe that PC describes the care of those with a very limited remaining life span.

Clinician barriers and facilitators to heart failure advance care plans: a systematic literature review and qualitative evidence synthesis.

BACKGROUND: Clinicians hesitate to engage with advance care planning (ACP) in heart failure. We aimed to identify the disease-specific barriers and facilitators for clinicians to engage with ACP. METHODS: We searched Medline, Embase, CINAHL, PubMed, Scopus, the British Nursing Index, the Cochrane Library, the EPOC register, ERIC, PsycINFO, the Science Citation Index and the Grey Literature from inception to July 2018. We conducted the review according to Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) guidelines. Two reviewers independently assessed original and empirical studies according to Critical Appraisal Skills Programme criteria. The SURE framework and thematic analysis were used to identify barriers and facilitators. RESULTS: Of 2308 articles screened, we reviewed the full text of 42 studies. Seventeen studies were included. The main barriers were lack of disease-specific knowledge about palliative care in heart failure, high emotional impact on clinicians when undertaking ACP and lack of multidisciplinary collaboration between healthcare professionals to reach consensus on when ACP is indicated. The main facilitators were being competent to provide holistic care when using ACP in heart failure, a patient taking the initiative of having an ACP conversation, and having the resources to deliver ACP at a time and place appropriate for the patient. CONCLUSIONS: Training healthcare professionals in the delivery of ACP in heart failure might be as important as enabling patients to start an ACP conversation. This twofold approach may mitigate against the high emotional impact of ACP. Complex interventions are needed to support clinicians as well as patients to engage with ACP.

Interventions for treating persistent and intractable hiccups in adults.

BACKGROUND: Persistent and intractable hiccups (typically defined as lasting for more than 48 hours and one month respectively) can be of serious detriment to a patient's quality of life, although they are relatively uncommon. A wide range of pharmacological and non-pharmacological interventions have been used for the treatment of persistent and intractable hiccups. However, there is little evidence as to which interventions are effective or harmful. OBJECTIVES: The objective of this review was to evaluate the effectiveness of pharmacological and non-pharmacological interventions used in the treatment of persistent and intractable hiccups of any aetiology in adults. SEARCH METHODS: Studies were identified from the following databases: CENTRAL, CDSR, DARE, MEDLINE, EMBASE, CINAHL, PsychINFO and SIGLE (last search March 2012). The search strategy for all the databases searched was based on the MEDLINE search strategy presented in Appendix 1. No additional handsearching of journals was undertaken. Investigators who are known to be carrying out research in this area were contacted for unpublished data or knowledge of the grey literature. SELECTION CRITERIA: Studies eligible for inclusion in this review were randomised controlled trials (RCTs) or controlled clinical trials (CCTs). INCLUSION CRITERIA: adults (over 18 years old) diagnosed with persistent or intractable hiccups (hiccups lasting more than 48 hours), treated with any pharmacological or non-pharmacological intervention. EXCLUSION CRITERIA: less than ten participants; no assessment of change in hiccup frequency or intensity in outcome measures. DATA COLLECTION AND ANALYSIS: Two independent review authors assessed each abstract and title for relevance. Disagreement on eligibility was resolved by discussion. Where no abstract was available the full paper was obtained and assessed. We obtained full copies of the studies which met the inclusion criteria for further assessment. Two review authors independently collected data from each appropriate study and entered them into the software Review Manager 5. Two independent review authors assessed the risk of bias using the RevMan 5 'Risk of bias' table following guidance from the Cochrane Handbook of Systematic Reviews of Interventions (Higgins 2009). MAIN RESULTS: A total of four studies (305 participants) met the inclusion criteria. All of these studies sought to determine the effectiveness of different acupuncture techniques in the treatment of persistent and intractable hiccups. All four studies had a high risk of bias, did not compare the intervention with placebo, and failed to report side effects or adverse events for either the treatment or control groups. Due to methodological differences we were unable to perform a meta-analysis of the results. No studies investigating pharmacological interventions for persistent and intractable hiccups met the inclusion criteria. AUTHORS' CONCLUSIONS: There is insufficient evidence to guide the treatment of persistent or intractable hiccups with either pharmacological or non-pharmacological interventions.The paucity of high quality studies indicate a need for randomised placebo-controlled trials of both pharmacological and non-pharmacological treatments. As the symptom is relatively rare, trials would need to be multi-centred and possibly multi-national.