Sean Hughes

Towards integration of palliative care in patients with chronic heart failure and chronic obstructive pulmonary disease: A systematic literature review of European guidelines and pathways

BackgroundDespite the positive impact of Palliative Care (PC) on the quality of life for patients and their relatives, the implementation of PC in non-cancer health-care delivery in the EU seems scarcely addressed. The aim of this study is to assess guidelines/pathways for integrated PC in patients with advanced Chronic Heart Failure (CHF) and Chronic Obstructive Pulmonary Disease (COPD) in Europe via a systematic literature review.MethodsSearch results were screened by two reviewers. Eligible studies of adult patients with CHF or COPD published between 01/01/1995 and 31/12/2013 in Europe in 6 languages were included. Nine electronic databases were searched, 6 journals were hand-searched and citation tracking was also performed. For the analysis, a narrative synthesis was employed.ResultsThe search strategy revealed 26,256 studies without duplicates. From these, 19 studies were included in the review; 17 guidelines and 2 pathways. 18 out of 19 focused on suffering reduction interventions, 13/19 on a holistic approach and 15/19 on discussions of illness prognosis and limitations. The involvement of a PC team was mentioned in 13/19 studies, the assessment of the patients’ goals of care in 12/19 and the advance care planning in 11/19. Only 4/19 studies elaborated on aspects such as grief and bereavement care, 7/19 on treatment in the last hours of life and 8/19 on the continuation of goal adjustment.ConclusionThe results illustrate that there is a growing awareness for the importance of integrated PC in patients with advanced CHF or COPD. At the same time, however, they signal the need for the development of standardized strategies so that existing barriers are alleviated.

Integrated palliative care in Europe: a qualitative systematic literature review of empirically-tested models in cancer and chronic disease

BackgroundIntegrated Palliative Care (PC) strategies are often implemented following models, namely standardized designs that provide frameworks for the organization of care for people with a progressive life-threatening illness and/or for their (in)formal caregivers. The aim of this qualitative systematic review is to identify empirically-evaluated models of PC in cancer and chronic disease in Europe. Further, develop a generic framework that will consist of the basis for the design of future models for integrated PC in Europe.MethodsCochrane, PubMed, EMBASE, CINAHL, AMED, BNI, Web of Science, NHS Evidence. Five journals and references from included studies were hand-searched. Two reviewers screened the search results. Studies with adult patients with advanced cancer/chronic disease from 1995 to 2013 in Europe, in English, French, German, Dutch, Hungarian or Spanish were included. A narrative synthesis was used.Results14 studies were included, 7 models for chronic disease, 4 for integrated care in oncology, 2 for both cancer and chronic disease and 2 for end-of-life pathways. The results show a strong agreement on the benefits of the involvement of a PC multidisciplinary team: better symptom control, less caregiver burden, improvement in continuity and coordination of care, fewer admissions, cost effectiveness and patients dying in their preferred place.ConclusionBased on our findings, a generic framework for integrated PC in cancer and chronic disease is proposed. This framework fosters integration of PC in the disease trajectory concurrently with treatment and identifies the importance of employing a PC-trained multidisciplinary team with a threefold focus: treatment, consulting and training.

A philosophical critique of the UK’s National Institute for Health and Care Excellence guideline ‘Palliative care for adults: strong opioids for pain relief’

The National Institute for Health and Care Excellence (NICE) promotes evidence-based medicine throughout contemporary health care. Its guidelines are employed in the United Kingdom and elsewhere, influencing the type and quality of health care provided. NICE considers a range of evidence in the process of creating guidelines; however, the research accepted as evidence greatly relies on positivist methodologies. At times, it is unnecessarily restricted to quantitative methods of data collection. Using the Clinical Guideline 140, opioids in palliative care, as an example, it is demonstrated that the research accepted as evidence is unable to provide answers to complex problems. In addition, several inherent biases are discussed, such as age inequality and pharmaceutical company influence. In order to provide coherent and useful guidelines relevant to complex problems in a real world setting, NICE must move away from focusing on data from randomised controlled trials. Its epistemological foundation must be questioned, paving the way for alternative research paradigms to be considered as evidence and thereby enriching subsequent guidelines.

O-12 Researching an innovative cottage hospice model of care: an academic and hospice partnership

Background Exploring innovative models of hospice, palliative and end of life care is imperative to meet contemporary demands in caring for those approaching the end of life. To this end, a new Cottage Hospice model is being developed in the south of England. The hospice concerned commissioned a concurrent two-year research study to track the programme development. This addresses the call for hospices to work with academics in determining which types of care work best (Payne, Preston, Turner, & Rolls, 2013). Aim To evaluate the development of Cottage Hospice using a research approach where solutions to challenges are developed collaboratively with a range of stakeholders. Results from this work will assist decision making as the programme proceeds. Methods Participatory Action Research is being used to evaluate the programme. A situational analysis using documents (n=77) and interviews (n=25) explored the programmes foundations. Action cycles (n=4–8) in which issues are worked on in small groups to reach agreed solutions followed the initial phase. Findings will be fed back to stakeholders in workshops to share and refine results. Results Initial results demonstrate a need for conceptual clarity about the model to be sought between staff, volunteers and service users in order to achieve a shared vision and support for the programme. Action cycles to address conceptual understandings and practical issues including staffing and family caregiver role are underway. It is anticipated that these will highlight areas for further action cycles. Conclusions The early involvement of an academic research team in evaluating a new model of hospice care represents an embedded and enlightened approach in which research is not an afterthought. We believe this strengthens the basis for this new initiative. Gaining an in-depth, evidence based understanding of how challenges were resolved in the implementation of Cottage Hospice may be of use to others in the sector planning similar initiatives.