Tracy Smith

Diagnosing dying: an integrative literature review

Background To ensure patients and families receive appropriate end-of-life care pathways and guidelines aim to inform clinical decision making. Ensuring appropriate outcomes through the use of these decision aids is dependent on timely use. Diagnosing dying is a complex clinical decision, and most of the available practice checklists relate to cancer. There is a need to review evidence to establish diagnostic indicators that death is imminent on the basis of need rather than a cancer diagnosis. Aim To examine the evidence as to how patients are judged by clinicians as being in the final hours or days of life. Design Integrative literature review. Data sources Five electronic databases (2001–2011): Cochrane Central Register of Controlled Trials (CENTRAL) on The Cochrane Library, MEDLINE, EMBASE, PsycINFO and CINAHL. The search yielded a total of 576 hits, 331 titles and abstracts were screened, 42 papers were retrieved and reviewed and 23 articles were included. Results Analysis reveals an overarching theme of uncertainty in diagnosing dying and two subthemes: (1) ‘characteristics of dying’ involve dying trajectories that incorporate physical, social, spiritual and psychological decline towards death; (2) ‘treatment orientation’ where decision making related to diagnosing dying may remain focused towards biomedical interventions rather than systematic planning for end-of-life care. Conclusions The findings of this review support the explicit recognition of ‘uncertainty in diagnosing dying’ and the need to work with and within this concept. Clinical decision making needs to allow for recovery where that potential exists, but equally there is the need to avoid futile interventions.

Interventions to support a palliative care approach in patients with chronic obstructive pulmonary disease: An integrative review

BACKGROUND End-stage chronic obstructive pulmonary disease (COPD) is a debilitating, life-limiting condition. A palliative approach is appropriate for individuals with end-stage COPD, yet currently few interventions embrace this holistic, multidisciplinary and inclusive perspective. OBJECTIVE To describe interventions to support a palliative care approach in patients with end-stage COPD. DESIGN Integrative review. DATA SOURCES AND REVIEW METHOD: Peer reviewed articles meeting the search criteria were accessed from Medline, PsychINFO, CINAHL and Google Scholar databases as well as Caresearch online resource. The domains of quality palliative care developed by Steinhauser were used as the conceptual framework to synthesise information. RESULTS This review has shown that a range of palliative interventions are used to address the needs of individuals with end-stage COPD. Although evidence exists for discrete elements of palliative management in this patient group, there is limited evidence for health service coordination and models that integrate the multiple domains of palliative care with active management. CONCLUSION Further investigation is required to address the complex personal, provider and system elements associated with managing end-stage COPD. A comprehensive and collaborative approach is required to address the complex and varied needs of individuals with end-stage COPD and their families.

The use of non-invasive ventilation for the relief of dyspnoea in exacerbations of chronic obstructive pulmonary disease; a systematic review

Background and objective:  Non‐invasive ventilation (NIV) improves outcomes in patients with acute exacerbations of COPD (AECOPD); however, the efficacy in relieving dyspnoea is uncertain. The objective of this systematic review was to identify, synthesize and interpret the data regarding the relief of dyspnoea afforded by NIV in patients admitted with acute respiratory failure occurring during AECOPD.

The need to research refractory breathlessness.

The joint American Thoracic Society (ATS)/European Respiratory Society (ERS) statement “An official American Thoracic Society/European Respiratory Society statement: research questions in COPD” by Celli et al. [1] is a timely summary of the current evidence and the questions that arise directly from where that evidence reaches its limits. Such documents are crucial in framing research strategies for researchers and research funders. High-quality research is needed to improve quality of life for people with chronic refractory breathlessness in COPD http://ow.ly/Q2GDY

Perspectives on advance care planning among patients recently requiring non-invasive ventilation for acute respiratory failure: A qualitative study using thematic analysis

Background: Patients requiring non-invasive ventilation for acute-on-chronic respiratory failure due to chronic obstructive pulmonary disease or heart failure exacerbations may have a poor prognosis underscoring the importance of advance care planning. Aim: We aimed to describe attitudes to, and experiences of, discussing the future among patients recently treated with non-invasive ventilation. Design: Qualitative research using thematic analysis. Settings and participants: Tertiary teaching hospital. Patients with acute hypercapnic respiratory failure requiring non-invasive ventilation. Results: Individuals recently treated with non-invasive ventilation describe feeling the future is beyond their control and instead controlled by their illness. Participants often recognised their poor prognosis but avoided discussing some difficult topics. The majority preferred not to undergo cardiopulmonary resuscitation but most had not discussed this with healthcare professionals. When participants voiced concerns about their future health to family members, they were met with polarised responses. Some encountered willingness for further discussion, while others met deflection, deterring further conversation. An overarching narrative of ‘Looking through my illness to an uncertain but concerning future’ unites these themes. Conclusion: This study suggests opportunities and barriers for advance care planning in individuals with chronic disease. Patients’ understanding of their prognosis and their attitudes to cardiopulmonary resuscitation suggests an opportunity for advance care planning. Structuring discussions around patients’ preferences for care during future exacerbations may foster a sense of control over the future despite illness. The diversity of familial responses to patients’ concerns about their future health has implications for advance care planning. These findings have the potential to improve care for patients with respiratory failure and suggest an important ongoing research agenda.

Life behind the mask: the patient experience of NIV

8 www.thelancet.com/respiratory Vol 3 January 2015 Over the past 30 years, non-invasive ventilation (NIV) has revolutionised the care of patients with acute and acute-on-chronic respiratory failure, and is now thought of as the standard of care. Improvements in survival and intubation rates are well established. However, uncertainty remains as to whether NIV relieves subjective dyspnoea. Whereas some patients adapt readily, others struggle. Development of a sound understanding of subjective experience for NIV might decrease intolerance and accelerate improvements in care. Patient-centred care is increasingly recommended in policy, practice, and research. Clinicians who understand the patient’s experience are well placed to balance the potentially competing pressures of clinical indications and the comfort and preference of the patient. In interventions for which patient cooperation is crucial, such as NIV, this balance is essential. Despite this need for cooperation, little is known about what is happening behind the mask. Two qualitative studies from Scandinavian nurse-led research teams have analysed the behaviours adopted by patients adjusting to acute NIV. Both studies reported on patients with acute exacerbations of chronic obstructive pulmonary disease. Torheim and colleagues analysed in-depth interviews with fi ve patients who had recently received NIV, and noted that patients reported initial feelings of being trapped and completely dependent on others. Reports from patients suggested that skilled nursing assistance and mobilisation of internal resources, including willpower, helped them to gain control over their treatment and increase their tolerance of NIV. Although this investigation is an important exploratory study, no attempt was made to reach thematic saturation (the point at which no additional themes are identifi ed from the reviewing of successive data), which is a potential methodological limitation. Sørenson and colleagues studied 21 patients undergoing NIV and undertook 11 in-depth patient interviews to develop a behavioural model of the experience of treatment with NIV. This group also saw an initial phase in which patients felt restrained by the Life behind the mask: the patient experience of NIV

Crossed cerebellar hyperperfusion on ictal FDG PET in astrocytoma

Crossed cerebellar hyperperfusion (CCH) is a rare phenomenon and reflects the close anatomical and functional relationship between the frontal brain region and its mediated remote effect on the contralateral cerebellum via the corticopontocerebellar pathway. Although it is well documented on cerebral single photon emission tomography (SPECT) in patients with epilepsy, it is rarely observed in seizures originating from brain tumours. We report a 41-y-old man who whilst undergoing (18)F-fluorodeoxyglucose (FDG) positron emission tomography (PET) for investigation of suspected glioma, developed a generalized seizure. The scan performed shortly after seizure onset demonstrated intense metabolic activity in the right superior frontal lobe and in the contralateral cerebellar hemisphere consistent with CCH.

Empowerment in people with COPD

License. The full terms of the License are available at http://creativecommons.org/licenses/by-nc/3.0/. Non-commercial uses of the work are permitted without any further permission from Dove Medical Press Limited, provided the work is properly attributed. Permissions beyond the scope of the License are administered by Dove Medical Press Limited. Information on how to request permission may be found at: http://www.dovepress.com/permissions.php Patient Intelligence 2016:8 7–20 Patient Intelligence Dovepress

P-290 A vision of person-centred culture (PCC) across the hospice: do all eyes see the same truth?

Background Over a two year period from 2015–2017, Queen Margaret University (QMU) facilitated a programme of practice development with a key group of multi-professional clinical and non-clinical staff. The Person-centred Practice Framework developed and updated by McCormack and McCance in 2016, continues to guide this on-going programme of work. Aims The overall aim was to move towards a shared vision of person-centred culture that focused strongly on people’s individual beliefs and values, processes and the care environment. Methods Transformational methods demonstrating the principles of practice development (McCormack et al., 2013) were used to create and define the person-centred vision and to explore and evaluate person-centred culture. The overall approach used the CIP principles – to be collaborative, inclusive and participative therefore the key group acted as facilitators for the wider hospice team. Evaluation methods included staff and patient stories and observations of care and environment. Facilitated events also took place to explore workplace culture, relationships and practices within designated teams. Results Measuring culture change is challenging and often takes place over a longer period than the two-year time frame of facilitation and active learning with QMU. Observations and feedback do however show demonstrable change. External teams have commented on the cohesiveness of teams with less silo-working and a greater understanding of each other’s purpose and values. The sessions to explore workplace culture also seem to have heightened self-awareness and instigated some changed behaviours in practice. More obvious and measurable changes have been to the physical environment which is much now more colourful and welcoming. This enhances an overall impression of culture shift and person-centredness. Conclusion The person-centred processes that have been used in all aspects of the work have proved to be effective and will continue through active facilitation and integration within all areas of the hospice in the future.