Integrating lived experiences of out-of-hours health services for people with palliative and end-of-life care needs with national datasets for people dying in Scotland in 2016: A mixed methods, multi-stage design.

BACKGROUND: Unscheduled care is used increasingly during the last year of life by people known to have significant palliative care needs. AIM: To document the frequency and patterns of use of unscheduled healthcare by people in their last year of life and understand the experiences and perspectives of patients, families and professionals about accessing unscheduled care out-of-hours. DESIGN: A mixed methods, multi-stage study integrating a retrospective cohort analysis of unscheduled healthcare service use in the last year of life for all people dying in Scotland in 2016 with qualitative data from three regions involving service users, bereaved carers and general practitioners. SETTING: Three contrasting Scottish Health Board regions and national datasets for the whole of Scotland. RESULTS: People who died in Scotland in 2016 (n = 56,407) had 472,360 unscheduled contacts with one of five services: telephone advice, primary care, ambulance service, emergency department and emergency hospital admission. These formed 206,841 individual continuous unscheduled care pathways: 65% starting out-of-hours. When accessing healthcare out-of-hours, patients and carers prioritised safety and a timely response. Their choice of which service to contact was informed by perceptions and previous experiences of potential delays and whether the outcome might be hospital admission. Professionals found it difficult to practice palliative care in a crisis unless the patient had previously been identified. CONCLUSION: Strengthening unscheduled care in the community, together with patient and public information about how to access these services could prevent hospital admissions of low benefit and enhance community support for people living with advanced illness.

Frailty assessment and risk prediction by GRACE score in older patients with acute myocardial infarction.

BACKGROUND: Risk prediction after myocardial infarction is often complex in older patients. The Global Registry of Acute Coronary Events (GRACE) model includes clinical parameters and age, but not frailty. We hypothesised that frailty would enhance the prognostic properties of GRACE. METHODS: We performed a prospective observational cohort study in two independent cardiology units: the Royal Infirmary of Edinburgh, UK (primary cohort) and the South Yorkshire Cardiothoracic Centre, Sheffield, UK (external validation). The study sample included 198 patients ≥65 years old hospitalised with type 1 myocardial infarction (primary cohort) and 96 patients ≥65 years old undergoing cardiac catheterisation for myocardial infarction (external validation). Frailty was assessed using the Clinical Frailty Scale (CFS). The GRACE 2.0 estimated risk of 12-month mortality, Charlson comorbidity index and Karnofsky disability scale were also determined for each patient. RESULTS: Forty (20%) patients were frail (CFS ≥5). These individuals had greater comorbidity, functional impairment and a higher risk of death at 12 months (49% vs. 9% in non-frail patients, p < 0.001). The hazard of 12-month all-cause mortality nearly doubled per point increase in CFS after adjustment for age, sex and comorbidity (Hazard Ratio [HR] 1.90, 95% CI 1.47-2.44, p < 0.001). The CFS had good discrimination for mortality by Receiver Operating Characteristic (ROC) curve analysis (Area Under the Curve [AUC] 0.81, 95% CI 0.72-0.89) and enhanced the GRACE estimate (AUC 0.86 vs. 0.80 without CFS, p = 0.04). At existing GRACE thresholds, the CFS resulted in a Net Reclassification Improvement (NRI) of 0.44 (95% CI 0.28-0.60, p < 0.001), largely through reductions in risk estimates amongst non-frail patients. Similar findings were observed in the external validation cohort (NRI 0.46, 95% CI 0.23-0.69, p < 0.001). CONCLUSIONS: The GRACE score overestimated mortality risk after myocardial infarction in these cohorts of older patients. The CFS is a simple guided frailty tool that may enhance prediction in this setting. These findings merit evaluation in larger cohorts of unselected patients. TRIAL REGISTRATION: Clinicaltrials.gov; NCT02302014 (November 26th 2014, retrospectively registered).

Exploring the concept of need in people with very severe chronic obstructive pulmonary disease: a qualitative study.

BACKGROUND: Despite apparent unmet needs, people with chronic obstructive pulmonary disease (COPD) rarely ask for help. We explored the concept of need from the perspective of patients, their family carers and professionals. METHODS: We recruited inpatients at two National Health Service (NHS) Lothian hospitals to a structured, holistic review of care needs delivered at home by a respiratory nurse 4 weeks postdischarge. Using semistructured interviews and group discussions, review notes and field-notes we explored the views of patients, carers and professionals on perceptions of need and the actions requested. Data were analysed thematically using Bradshaw's classification of need. RESULTS: 14 patients, 3 carers, 28 professionals provided 36 interviews and 2 discussion groups. Few needs were identified by our intervention and few actions planned. Professionals identified 'normative' needs some of which had been addressed during routine discharge planning. Other needs (physical/psychological limitations, social/financial concerns, existential issues) were 'felt' by patients and carers but articulated in response to the researcher's questions rather than actively 'expressed'. Patients often did not wish any action to address the problems, preferring care from family members rather than formal agencies. Many spoke of the over-arching importance of retaining a sense of independence and autonomy, considering themselves as ageing rather than ill. CONCLUSIONS: In contrast to professionally-defined 'normative' needs, patients rarely perceived themselves as needy, accepting their 'felt' needs as the result of a disability to which they had now adapted. Sensitive approaches that foster independence may enable patients to 'express' needs that are amenable to help without disturbing the adaptive equilibrium they have achieved. TRIAL REGISTRATION NUMBER: NCT01650480.

Improving care for people with heart failure in Uganda: serial in-depth interviews with patients' and their health care professionals.

BACKGROUND: The short prognosis of patients with advanced heart failure (HF) and the associated multidimensional distress as illustrated in literature from high income countries necessitates the integration of palliative care into the care of advanced HF patients to address these needs and improve their quality of life. These needs, which are subjective, have not been described from the patients' and health care professionals'(HPs) view point in the Ugandan setting, a low income country with a different socio-cultural context. This study aimed at bridging this gap in knowledge by eliciting patients' and HPs' views of HF patients' needs over the course of their illness to enable generalists, cardiologists and palliative care clinicians to develop guidelines to provide patient-centred realistic care in Uganda. METHODS: Serial qualitative in-depth interviews were conducted with HF patients who were purposively sampled and recruited in Mulago National Referral Hospital (MNRH) until thematic saturation. In-depth interviews were conducted at three time points with intervals of 3 month between interviews over the course of their illness in the hospital and their home context. One-off interviews were conducted with HPs that manage HF in MNRH. We used a grounded theory approach in data analysis. The Uganda National Council of science and technology approved the research. RESULTS: Forty-eight interviews were conducted with 21 patients and their carers and eight interviews with their HPs. Multidimensional needs including physical, psychological, social, spiritual and information needs were identified. These highlighted the underpinning need to have normal functioning, control, to cope and adapt to a changed life and to find meaning. Spiritual needs were less recognised by HPs than the other multidimensional needs. Information needs were commonly unmet. Patients and HPs suggested improvements in care that were congruent with the recommendations in chronic disease care and the six pillars of the WHO health systems strengthening approach. CONCLUSION: Management of HF in Uganda requires an approach that targets multidimensional needs, embraces multidisciplinary care and strengthens health systems which are all important tenets of palliative care.

Comprehensive and Integrated Palliative Care for People With Advanced Chronic Conditions: An Update From Several European Initiatives and Recommendations for Policy.

The number of people in their last years of life with advanced chronic conditions, palliative care needs, and limited life prognosis due to different causes including multi-morbidity, organ failure, frailty, dementia, and cancer is rising. Such people represent more than 1% of the population. They are present in all care settings, cause around 75% of mortality, and may account for up to one-third of total national health system spend. The response to their needs is usually late and largely based around institutional palliative care focused on cancer. There is a great need to identify these patients and integrate an early palliative approach according to their individual needs in all settings, as suggested by the World Health Organization. Several tools have recently been developed in different European regions to identify patients with chronic conditions who might benefit from palliative care. Similarly, several models of integrated palliative care have been developed, some with a public health approach to promote access to all in need. We describe the characteristics of these initiatives and suggest how to develop a comprehensive and integrated palliative approach in primary and hospital care and to design public health and community-oriented practices to assess and respond to the needs in the whole population. Additionally, we report ethical challenges and prognostic issues raised and emphasize the need for research to test the various tools and models to generate evidence about the benefits of these approaches to patients, their families, and to the health system.

A palliative care link nurse programme in Mulago Hospital, Uganda: an evaluation using mixed methods.

BACKGROUND: Integrating palliative care (PC) and empowering the health care workforce is essential to achieve universal access to PC services. In 2010, 46% of patients in Mulago Hospital, Uganda had a life limiting illness, of whom 96% had PC needs. The university/hospital specialist PC unit (Makerere/Mulago Palliative Care Unit -MPCU) implemented a link-nurse model to empower hospital nurses to provide generalist PC. Over two years, 27 link nurses were trained and mentored and 11 clinical protocols developed. The aim of the study was to evaluate the impact of the palliative care link nurse programme at Mulago Hospital METHODS: An evaluation approach utilising mixed methods was used integrating qualitative and quantitative data including: pre and post course assessment confidence ratings; course evaluation forms; audit of clinical guidelines availability; review of link-nurse activity sheets/action plans; review of MPCU patient documentation; Most Significant Change (MSC); individual and focus group interviews. RESULTS: A significant difference was seen in nurses' confidence after the training (p < 0.001). From July 2012 to December 2013, link nurses identified 2447 patients needing PC, of whom they cared for 2113 (86%) and referred 334 (14%) to MPCU. Clinical guidelines/protocols were utilised in 50% of wards. Main themes identified include: change in attitude; developing new skills and knowledge; change in relationships; improved outcomes of care, along with the challenges that they experienced in integrating PC. Since the start of the programme there has been an increase in PC patients seen at the hospital (611 in 2011 to 1788 in 2013). CONCLUSION: The link-nurse programme is a practical model for integrating PC into generalist services. Recommendations have been made for ongoing development and expansion of the programme as an effective health systems strengthening approach in similar healthcare contexts, as well as the improvement in medical and nursing education.

Understanding the barriers to identifying carers of people with advanced illness in primary care: triangulating three data sources.

BACKGROUND: Approximately 10% of the UK population have an unpaid caring role for a family member or friend. Many of these carers make a significant contribution to supporting patients at the end of life. Carers can experience poor physical and psychosocial wellbeing, yet they remain largely unsupported by health and social care services. Despite initiatives for general practices to identify carers and their needs, many remain unidentified. Neither are carers self-identifying and requesting support. This study set out to explore the barriers to, and consider strategies for, identifying carers in primary care. METHODS: We integrated findings from three data sources - a review of the caregiving literature; a workshop with researchers who have undertaken research with those caring at the end of life, and focus groups with carers and health professionals. RESULTS: Three categories of barrier emerged. 1) Taking on the care of another person is often a gradual process, carers did not immediately identify with being a 'carer' - preferring to think of themselves in relational terms to the patient e.g. spouse, sibling, son or daughter. Often it was health and social care professionals who encouraged carers to consider themselves as an unpaid carer. 2) As the cared-for person's condition deteriorated, the caring role often became all-encompassing so that carers were managing competing demands, and felt unable to look after their own needs as well as those of the cared-for person. 3) There was ambiguity about the legitimacy of carer needs and about the role of the primary health care team in supporting carers, from both the perspective of the carers and the health professionals. GPs were thought to be reactive rather than proactive which discouraged carers from asking for help. CONCLUSIONS: The needs of carers have to be legitimised to ensure primary care staff are proactive in their approach and carers are empowered to utilise the support available. Strategies to identify carers have to be sensitive to the complex dynamics of a caring relationship as well as the primary care context. Identification is a key factor in improving support for carers themselves and to enable them to support the patient.

The impact of advanced heart failure on social, psychological and existential aspects and personhood.

BACKGROUND: Heart failure is a common cause of death and causes significant morbidity in its advanced stage. As the illness progresses, lack of physical health may overshadow psychological, social and existential distress. AIMS: To explore the impact of advanced heart failure on other aspects of the patients' lives. METHODS: We undertook a secondary analysis of interview data generated for a qualitative longitudinal study looking at the experiences of patients with advanced heart failure, and their family and professional carers. A sub set of patient, family and professional carer interview transcripts was selected for thematic analysis. The sample was chosen to reflect a range of age, gender and social situations. RESULTS: Eighteen transcripts from five cases were examined. Three key themes were identified: 1) social isolation; 2) psychological issues and coping strategies; and 3) existential concerns. CONCLUSIONS: Psychosocial and existential issues are important aspects of the lives of patients suffering from heart failure. Holistic management should encompass an awareness of exploration and support for these dimensions.

Improving end-of-life care in nursing homes: implementation and evaluation of an intervention to sustain quality of care.

BACKGROUND: Internationally, policy calls for care homes to provide reliably good end-of-life care. We undertook a 20-month project to sustain palliative care improvements achieved by a previous intervention. AIM: To sustain a high standard of palliative care in seven UK nursing care homes using a lower level of support than employed during the original project and to evaluate the effectiveness of this intervention. DESIGN: Two palliative care nurse specialists each spent one day per week providing support and training to seven care homes in Scotland, United Kingdom; after death audit data were collected each month and analysed. RESULTS: During the sustainability project, 132 residents died. In comparison with the initial intervention, there were increases in (a) the proportion of deceased residents with an anticipatory care plan in place (b) the proportion of those with Do Not Attempt Cardiopulmonary Resuscitation documentation in place and (c) the proportion of those who were on the Liverpool Care Pathway when they died. Furthermore, there was a reduction in inappropriate hospital deaths of frail and elderly residents with dementia. However, overall hospital deaths increased. CONCLUSIONS: A lower level of nursing support managed to sustain and build on the initial outcomes. However, despite increased adoption of key end-of-life care tools, hospital deaths were higher during the sustainability project. While good support from palliative care nurse specialists and GPs can help ensure that key processes remain in place, stable management and key champions are vital to ensure that a palliative care approach becomes embedded within the culture of the care home.

Evaluating complex interventions in end of life care: the MORECare statement on good practice generated by a synthesis of transparent expert consultations and systematic reviews.

BACKGROUND: Despite being a core business of medicine, end of life care (EoLC) is neglected. It is hampered by research that is difficult to conduct with no common standards. We aimed to develop evidence-based guidance on the best methods for the design and conduct of research on EoLC to further knowledge in the field. METHODS: The Methods Of Researching End of life Care (MORECare) project built on the Medical Research Council guidance on the development and evaluation of complex circumstances. We conducted systematic literature reviews, transparent expert consultations (TEC) involving consensus methods of nominal group and online voting, and stakeholder workshops to identify challenges and best practice in EoLC research, including: participation recruitment, ethics, attrition, integration of mixed methods, complex outcomes and economic evaluation. We synthesised all findings to develop a guidance statement on the best methods to research EoLC. RESULTS: We integrated data from three systematic reviews and five TECs with 133 online responses. We recommend research designs extending beyond randomised trials and encompassing mixed methods. Patients and families value participation in research, and consumer or patient collaboration in developing studies can resolve some ethical concerns. It is ethically desirable to offer patients and families the opportunity to participate in research. Outcome measures should be short, responsive to change and ideally used for both clinical practice and research. Attrition should be anticipated in studies and may affirm inclusion of the relevant population, but careful reporting is necessitated using a new classification. Eventual implementation requires consideration at all stages of the project. CONCLUSIONS: The MORECare statement provides 36 best practice solutions for research evaluating services and treatments in EoLC to improve study quality and set the standard for future research. The statement may be used alongside existing statements and provides a first step in setting common, much needed standards for evaluative research in EoLC. These are relevant to those undertaking research, trainee researchers, research funders, ethical committees and editors.

What tools are available to identify patients with palliative care needs in primary care: a systematic literature review and survey of European practice.

BACKGROUND: It can be difficult to identify when a palliative care approach should be started both in malignant, and particularly, in non-malignant disease, ideally to run alongside disease-modifying care. A structured method or tool may be useful to help general practitioners (GPs) identify patients for early palliative care and trigger assessment and care planning. AIMS: To document what tools for identification of patients with palliative care needs are available in the published literature and to ascertain how GPs in Europe currently identify patients for palliative care. METHODS: A systematic literature search using PubMed and Embase, and a questionnaire survey among key informants in 14 European countries requesting data on methods used to identify patients with palliative care needs. RESULTS: The literature search identified four tools. The questionnaire survey identified a further three in current use and found that in current practice identification is largely based on a GP's own clinical judgement and information received from the hospital: tools are rarely used. CONCLUSIONS: Although several identification tools have been developed, none of these have been validated or widely implemented in Europe. Further collaborative international development, implementation and evaluation of such tools are recommended.

Adjustment and support needs of glioma patients and their relatives: serial interviews.

OBJECTIVE: To understand factors influencing the process of adjustment to a diagnosis of glioma. METHODS: Twenty-six patients and 23 relatives took part in 80 in-depth qualitative interviews conducted at five key stages: before formal diagnosis, at start of treatment, on completion of treatment, 6 months post treatment, and post bereavement. RESULTS: High levels of distress were reported, particularly preceding and following diagnosis. Many participants described lack of specific information in the early part of their illness and a lack of clarity about what was wrong and what was going to happen next. They often desired more procedural information, as well as information about their condition and treatments available, although there was variation in the timing of when people were ready to hear this. Receiving reassurance and support was essential to patients and their relatives to help them come to terms with their illness. This need was particularly acute during the early phase of the illness when distress and uncertainty were at a peak and lessened over time as people adjusted to their illness. CONCLUSIONS: Offering suitable information about what to expect early and frequently in a supportive way is much appreciated by patients. There is an important balance between ensuring that patients and their families are fully informed and fostering adaptive coping that allows for hope.

An embedded longitudinal multi-faceted qualitative evaluation of a complex cluster randomized controlled trial aiming to reduce clinically important errors in medicines management in general practice.

BACKGROUND: There is a need to shed light on the pathways through which complex interventions mediate their effects in order to enable critical reflection on their transferability. We sought to explore and understand key stakeholder accounts of the acceptability, likely impact and strategies for optimizing and rolling-out a successful pharmacist-led information technology-enabled (PINCER) intervention, which substantially reduced the risk of clinically important errors in medicines management in primary care. METHODS: Data were collected at two geographical locations in central England through a combination of one-to-one longitudinal semi-structured telephone interviews (one at the beginning of the trial and another when the trial was well underway), relevant documents, and focus group discussions following delivery of the PINCER intervention. Participants included PINCER pharmacists, general practice staff, researchers involved in the running of the trial, and primary care trust staff. PINCER pharmacists were interviewed at three different time-points during the delivery of the PINCER intervention. Analysis was thematic with diffusion of innovation theory providing a theoretical framework. RESULTS: We conducted 52 semi-structured telephone interviews and six focus group discussions with 30 additional participants. In addition, documentary data were collected from six pharmacist diaries, along with notes from four meetings of the PINCER pharmacists and feedback meetings from 34 practices. Key findings that helped to explain the success of the PINCER intervention included the perceived importance of focusing on prescribing errors to all stakeholders, and the credibility and appropriateness of a pharmacist-led intervention to address these shortcomings. Central to this was the face-to-face contact and relationship building between pharmacists and a range of practice staff, and pharmacists' explicitly designated role as a change agent. However, important concerns were identified about the likely sustainability of this new model of delivering care, in the absence of an appropriate support network for pharmacists and career development pathways. CONCLUSIONS: This embedded qualitative inquiry has helped to understand the complex organizational and social environment in which the trial was undertaken and the PINCER intervention was delivered. The longitudinal element has given insight into the dynamic changes and developments over time. Medication errors and ways to address these are high on stakeholders' agendas. Our results further indicate that pharmacists were, because of their professional standing and skill-set, able to engage with the complex general practice environment and able to identify and manage many clinically important errors in medicines management. The transferability of the PINCER intervention approach, both in relation to other prescribing errors and to other practices, is likely to be high.

Palliative care in Africa since 2005: good progress, but much further to go.

There has been rapid progress in palliative care in Africa since the World Health Assembly in 2005 which identified palliative care as an urgent humanitarian need. Palliative care is now recognised as a basic human right, and momentum has gathered to translate this into action. From being significantly present in only five countries in 2004, palliative care is now delivered in nearly 50% of African countries. Even so, still less than 5% of people in need currently receive it, and with an estimated 300% increase in the need for palliative care for people with non-communicable diseases over the next 20 years, and with those living with HIV needing more prolonged support, the demand for palliative care will continue to outpace supply. African countries adopting a public health approach and networking together through palliative care associations are beginning to embed and integrate palliative care into health systems and communities. Current challenges are to increase coverage while maintaining quality, to develop dynamic and flexible responses to the changing illness patterns in Africa, and to counter false beliefs. Resourcefulness and harnessing new technologies such as mobile phones while respecting cultural traditions, may be the way forward. The authors review recent progress in policy, service provision and training initiatives in Africa, illustrate the current situation at grass roots level from a recent evaluation of programmes in Kenya, Malawi and Uganda, analyse the current urgent challenges and suggest some ways ahead.

Palliative care in urgent need of recognition and development in general practice: the example of Germany.

BACKGROUND: Specialist palliative care is being increasingly recognised and developed to improve end-of-life care in many developed countries. However, only a small proportion of the total number of patients with incurable, progressive diseases actually has direct contact with specialist palliative care practitioners. Using the German situation as an example, the main purpose of this paper is to argue that the emphasis on specialist palliative care services without a similar encouragement of primary palliative care will deliver a constrained service. DISCUSSION: For the vast majority of people with incurable, progressive diseases, good palliative care delivered by General Practitioners and community nurses, with access to specialist support when needed, is the optimal response. In Germany, specialist palliative care in the community was established in the 2007 health care reforms. However actual and potential delivery of palliative care by general practitioners and community based nurses has been sorely neglected. The time-consuming care of palliative patients and their families is currently far from accurately reflected in German, indeed most European primary care payment systems. However, it is not just a question of adequate financial compensation but also of the recognition of the fundamental value of this intense form of holistic family medicine. SUMMARY: It is imperative palliative care carried out by community nurses and general practitioners is better recognised by health professionals, health insurers, government and the scientific community as a central part of the delivery of health care for people in the last phase of life. Health systems should be arranged so that this critical role of general practice and primary care is intentionally fostered. Palliative care carried out by generalists needs an identity at an academic and practical level, developing in concert with specialist palliative care.