Declan Cawley

Potential triggers for the holistic assessment of people with severe chronic obstructive pulmonary disease: analysis of multiperspective, serial qualitative interviews

Objectives This study explores the narrative accounts of chronic obstructive pulmonary disease (COPD) to identify events that potentially could act as triggers for provision of supportive and palliative care. Trigger events must have meaning for the patient/carer, be visible to professionals, and have value in provoking useful actions. Methods A purposive sample of people with severe COPD, and their informal and professional carers, was recruited from primary/secondary care in Scotland. Indepth participant-led interviews allowed people to tell their illness story. Events occurring throughout the individuals account of the COPD journey were identified, and analysed thematically with regard to the meaning, visibility and use as potential triggers. Results Events identified from 92 transcripts (21 patients, 13 family carers, 18 professionals) punctuated the disease trajectory and crossed multiprofessional boundaries of care. These reflected advancing disease (increasing carer burden, becoming housebound, appointment frequency, increasing burden of disease, shifting priorities of care) or were an intervention addressing the consequences of advancing disease (requesting disabled parking, home adaptations, hospital admissions). Despite being meaningful in terms of increasing disability, many were invisible to professionals. Others were isolated events symptomatic of wider, ongoing disability which could potentially have use as triggers. Conclusions Meaningful events can be identified within the story of COPD which reflect wider needs, are clearly visible to alert professionals, and be of use in terms of potentially guiding supportive interventions. To achieve this level of usefulness, services will need to promote health and social care integration with clear processes to facilitate holistic assessment when a trigger is detected.

Palliative care in people with chronic obstructive pulmonary disease

Passive acceptance of the illness has implications for end of life care and delivery of services

Prognosis prediction with two calculations of Palliative Prognostic Index: further prospective validation in hospice cancer patients with multicentre study

Objectives In palliative care settings, predicting prognosis is important for patients and clinicians. The Palliative Prognostic Index (PPI), a prognostic tool calculated using clinical indices alone has been validated within cancer population. This study was to further test the discriminatory ability of the PPI (ie, its ability to determine whether a subject will live more or less than a certain amount of time) in a larger sample but with a palliative care context and to compare predictions at two different points in time. Methods Multicentre, prospective, observational study in 10 inpatient hospices in the UK. The PPI score was calculated on the day of admission (PPI1) and again once on days 3–5 of inpatient stay (PPI2). Patients were followed up for 6 weeks or until death, whichever was earlier. Results Of the 1164 patients included in the study, 962 had both scores available. The results from PPI2 showed improved sensitivity, specificity, positive predictive value and negative predictive value compared with PPI1. For PPI1versus PPI2, area under receiver operator character curve (ROC) for <21 days were 0.73 versus 0.82 and for ≥42 days prediction 0.72 versus 0.80. The median survival days for patients with PPI1 ≤4, 4.5–6 and >6 were 38 (31 to 44), 17 (14 to 19) and 5 (4 to 7). Conclusion This study showed improved discriminatory ability using the PPI score calculated between day 3and day5 of admission compared with that calculated on admission. This study further validated PPI as a prognostic tool within a palliative care population and showed recording at two time points improved accuracy.

P-115 A hospice breathlessness management intervention service – a blend of the old with the new!

Background Breathlessness is one of the most distressing symptoms reported in the literature with the prevalence rising with the vast multi-morbidity people are living with. The breathlessness management intervention for patients with a variety of mixed pathologies but they have the commonality of refractory, end stage breathlessness. The approach employs non-pharmacological approaches but clearly can be in tandem to pharmacological agents. Aim The intervention aims to reduce the resultant distress from breathlessness whilst improving functional capacity with improving the activities of daily living ability and the overall quality of life. Method The intervention was compiled using available evidence from published data specifically geared at refractory breathlessness in advanced disease. Results The group developed a set of objectives, referral criteria and a service specification to replicate across the organisation. Evidence from the literature supports carers managing the “dyspnoea crisis” and inclusion with exploration of their feelings, concerns and expectations and education. Recent work suggested that low intensity (one session) breathlessness management was as effective as high (three sessions) intensity but the wider remit of this intervention and its proposed outcomes, three sessions were employed. Sessions comprise of components of education with regard to physiological changes that occur during breathlessness, why exercise is important and why breathing control works. Anxiety management including the carer is a fundamental component in managing the dyadic units response to “dyspnoea crisis”. Finally goal setting in terms of the 3Ps (pacing, planning and prioritising) are key to enabling functional improvement. Objective and subjective assessments are completed to help track changes over time for patients/carers and professionals. Conclusions This breathlessness management intervention has been clearly articulated in a pathway to help internal and external professionals understand the process and the components involved whilst meeting the need for commissioning bodies to see evidence of activity linked to meaningful patient outcomes.

The role of the volunteer research assistant in a hospice setting

Background A hospice setting has a small, busy research team and the volunteer research assistant is an important role within the team, providing additional support for delivery of research projects and related activities. The role was first introduced in 2014 following the development of research infrastructure and capacity building within the organisation. Aim and method To introduce volunteers to support hospice research including: Assisting with set up and co-ordination of studies. Including support with the organisation and collation of study materials, meetings and training to the site. Assisting the set up and running of research events by helping organise attendance lists and other materials. Greeting and registering attendees on arrival. Data entry and data checking. Results Involved volunteers has provided the hospice with additional research capacity to deliver projects and other research related activities. Volunteers with different skills, expertise and experience of the organisation has enabled matching their input to the needs of the research activity. Experience of involving volunteers has enabled development of a role description for a ‘volunteer research assistant’. Introducing the role of the ‘volunteer research assistant’ has helped to promote ownership of this unique position to those involved. There is value in developing this role to provide regular support in developing, setup, delivering and disseminating research within hospices. Conclusions Involving volunteers as part of the research team has been a rewarding one working towards the hospice’s strategy to become increasingly research active to provide the best care for patients and their families.

An audit on ‘death rattle’ (noisy breathing at the end of life), and usage of antisecretory medicat

‘Noisy breathing’ also known as death rattle, is common in end of life care situations and can be distressing for the family given its unpleasant resonance. A recent Cochrane review by Wee et al (2009 review) concluded that there is no evidence to show any intervention was superior to placebo; it is very difficult to subsequently manage. Aim To evaluate current practice against national guidelines on the use of antisecretory medications in end of life care. Methodology Retrospective, case notes review of all the patients died in the authors unit (Jan 2011–May 2011). Results Seventy-two patients were identified with 65 patients having antisecretory drugs prescribed and 36 patients requiring medications. 49/65 had complied with the recommended guidance with only 29/36 having a documentation of a response. 7/36 patients with no documentation of assessment. 24/29 patients had documented benefit from the antisecretory drug and a syringe driver started in 24/36 cases. Apart from drugs evidence of other modalities used was lacking: 3/36 patients evidence of re-positioning only. Documentation of communication with family was only in 4/36. 22/36 patients died within 48 h from 1st dose of antisecretory given and 16/24 patients died within 24 h of the syringe driver starting. Conclusion In a majority of patients medications used appropriately and response assessment completed. However, documentation of communication with family and other approaches needs to be improved. Interestingly when antisecretory drugs were used death ensued within 48 hrs for the majority. Education of all staff members is extremely important along with regular audit.

Comparing the use of Edmonton symptom assessment system (ESAS-r) in hospice & oncology outpatients

Current guidance, nationally and internationally, would suggest within oncology and hospice outpatient settings holistic assessment be completed. However how this should occur and what assessment tool be used, there is no agreed consensus. Aim To explore the use of a validated patient reported symptom assessment tool within a lung oncology and hospice outpatient setting. Methodology An exploratory study looking at patient reported ESAS-r assessment form completion prior to attending their clinic review with an oncology and hospice setting and the data collected, analysed for comparison. Results Total number of Hospice patents: 22 (male13: female 9), age: 42–80 versus total number of Oncology out patients: 26 (male14: female 12), age: 54–91. The median total symptom score for hospice outpatients was 34.5/100 versus median total score for Oncology outpatients was 23.5/100. Tiredness (6.5/10) and drowsiness (5/10) were the high scoring symptoms within hospice outpatients while tiredness (5/10) and wellbeing (5/10) were in the lung cancer outpatient setting. The median score for pain and shortness of breath was 3/10 & 0/10 in Hospice patients versus 1/10 & 1.75/10 in Oncology clinic patients. Conclusion The symptom scores were comparable and not surprisingly the median scores were higher in the hospice outpatient setting. The physical and psychological symptoms scored significantly higher in the hospice outpatient population. The authors acknowledge the small sample size and this was an exploratory piece of work. However, clinicians found the ESAS-r tool to be clinically useful and helped focus discussions about what was important from a patients agenda but helped in the disclosure of commonly ignored symptoms such as fatigue. This then prompted further assessment for eligibility for clinical trials specifically directed at fatigue management. Therefore the use of a patient, self-reported holistic assessment tool is a useful addition to oncology and hospice outpatient clinics.

Audit on NHS fast tract applications: prognostic prediction & preferred place of care/death

Background ‘NHS fast tract’ enables urgent care allocation to a patient whose primary health need is classified as ‘rapidly deteriorating condition with an increasing level of dependency and approaching end of life care’. The guidance states clearly that life expectancy does not form a part of the eligibility criteria under fast tract route. This approach aims to ensure that the individual in question with get the care they require and this be their preferred place of care and be in place within 48 h. Aim To explore the possibility that the fast track process can act as a useful aide memoire when professionals are trying to predict prognosis in individuals with progressive, life limiting conditions. Methodology A retrospective case note review as well as fast track documentation within a hospice setting over 3 months. Results Fourty-two patients identified who applied for the ‘NHS fast tract’ process with 41 applications approved. In 39/42 (93%) applications a decision was reached within 48 h with the remaining applications getting a decision in 72 h. In terms of accuracy of prediction: 36/42 (86%) died with 12 weeks of approval.28/42 (67%) achieved their preferred place of care (PPoC) and death (PPoD) with 6/42 (14%) not able to have the conversation regarding PPoC/D. Conclusion The possibility that the Fast Track process may help clinicians in trying to build an approach in aiding prognostication and facilitating individuals to be cared for and die in their preferred setting is promising. The use of an existing process that can timely facilitate end of life care in individuals with the helpfulness of timelines can only help manage resources that are currently so limited. We aim to use this approach with additional data methods to try and gain further knowledge in best planning end of life care.

Using consensus methodology to identify events that could trigger holistic assessment in severe COPD

Background Current policy demands that ‘quality’ end of life care should be universally available irrespective of illness but evidence on how this should be done in non-malignant disease lacking. The ‘lack of biographical disruption’ and uncertainty of the COPD disease trajectory makes this difficult within a service model predicated on identifying ‘transitions’ to palliative care. Therefore the authors require an approach that will capture the ‘needs’ of individuals with severe COPD and their carers, irrespective of which professional arena they come into contact with. Aims To identify ‘events’ within the life-long disease trajectory of COPD, that can trigger an assessment of the holistic (supportive and palliative care) needs of patients with severe disease and their carers. Method 1. Secondary analysis of transcripts from the ‘Breath of Fresh Air’ study (Pinnock et al., BMJ 2011; 342: d142) to identify candidate ‘events’ for consideration as triggers. 2. Consensus meeting of health and social care professionals to characterise a ‘trigger’ and prioritise candidate ‘events’ using a nominal group technique. Results Eight candidate ‘events’ were identified: requesting a ‘Blue badge`, home adaptations, hospital admissions, increasing burden of disease, housebound, failure to attend an appointment, shifting priorities of care, increasing carer burden. The consensus meeting affirmed that a successful ‘trigger’ should be visible to patient/carer/health or social care professional, meaningful to all stakeholders involved, actionable (i.e amenable to an intervention). The candidate ‘events’ that reached consensus (>75% agreement) were requesting home adaptations, hospital admissions and being housebound. Conclusion The multi-disciplinary group agreed the key characteristics required for an effective ‘triggers’, and prioritised three candidate events. These need to be explored with COPD patients and their carers, to understand their acceptability, attributability, reliability, feasibility and relevance of triggers in delivering quality care for people with severe COPD and carers.