Susan Buckingham

Different Experiences and Goals in Different Advanced Diseases: Comparing Serial Interviews with Patients with Cancer, Organ Failure or Frailty and Their Family and Professional Carers

CONTEXT Quality care for people living with life-limiting illnesses is a global priority. A detailed understanding of the varied experiences of people living and dying with different conditions and their family and professional caregivers should help policymakers and clinicians design and deliver more appropriate and person-centered care. OBJECTIVES To understand how patients with different advanced conditions and their family and professional caregivers perceive their deteriorating health and the services they need. METHODS We used a narrative framework to synthesize eight methodologically comparable, longitudinal, and multiperspective interview studies. We compared the end-of-life experiences of people dying from cancer (lung, glioma, and colorectal cancer), organ failure (heart failure, chronic obstructive pulmonary disease, and liver failure), and physical frailty and those of their family and professional caregivers in socioeconomically and ethnically diverse populations in Scotland. RESULTS The data set comprised 828 in-depth interviews with 156 patients, 114 family caregivers, and 170 health professionals. Narratives about cancer typically had a clear beginning, middle, and an anticipated end. Cancer patients gave a well-rehearsed account of their illness, hoping for recovery alongside fear of dying. In contrast, people with organ failure and their family caregivers struggled to pinpoint when their illness began, or to speak openly about death, hoping instead to avoid further deterioration. Frail older people tended to be frustrated by their progressive loss of independence, fearing dementia or nursing home admission more than dying. CONCLUSION These contrasting illness narratives affect and shape the experiences, thoughts, and fears of patients and their carers in the last months of life. Palliative care offered by generalists or specialists should be provided more flexibly and equitably, responding to the varied concerns and needs of people with different advanced conditions.

Effectiveness of Holistic Interventions for People with Severe Chronic Obstructive Pulmonary Disease: Systematic Review of Controlled Clinical Trials

Background Despite a well-recognised burden of disabling physical symptoms compounded by co-morbidities, psychological distress and social isolation, the needs of people with severe chronic obstructive pulmonary disease (COPD) are typically poorly addressed. Aim To assess the effectiveness of interventions designed to deliver holistic care for people with severe COPD. Methods We searched 11 biomedical databases, three trial repositories (January 1990-March 2012; no language restrictions) and contacted international experts to locate published, unpublished and in-progress randomised controlled trials (RCTs), quasi-RCTs and controlled clinical trials (CCTs) that investigated holistic interventions to support patients with severe COPD in any healthcare context. The primary outcome was health-related quality of life (HRQoL). Quality assessment and data extraction followed Cochrane Collaboration methodology. We used a piloted data extraction sheet and undertook narrative synthesis. Results From 2,866 potentially relevant papers, we identified three trials: two RCTs (from United States and Australia), and one CCT (from Thailand): total 216 patients. Risk of bias was assessed as moderate in two studies and high in the third. All the interventions were led by nurses acting in a co-ordinating role (e.g. facilitating community support in Thailand, providing case-management in the USA, or co-ordinating inpatient care in Australia). HRQoL improved significantly in the Thai CCT compared to the (very limited) usual care (p<0.001), in two sub-domains in the American trial, but showed no significant changes in the Australian trial. Exercise tolerance, dyspnoea, and satisfaction with care also improved in the Thai trial. Conclusions Some 15 years after reports first highlighted the unmet needs of people with severe COPD, we have been unable to find robust trial evidence about interventions that can address those needs. There is an urgent need to develop and evaluate holistic care interventions designed improve HRQoL for people with severe COPD. Systematic Review Registration PROSPERO (CRD42012002430).

HELPing older people with very severe chronic obstructive pulmonary disease (HELP-COPD): mixed-method feasibility pilot randomised controlled trial of a novel intervention

Background:Extending palliative care to those with advanced non-malignant disease is advocated, but the implications in specific conditions are poorly understood.AIMs:We piloted a novel nurse-led intervention, HELPing older people with very severe chronic obstructive pulmonary disease (HELP-COPD), undertaken 4 weeks after discharge from hospital, which sought to identify and address the holistic care needs of people with severe COPD.Methods:This 6-month mixed-method feasibility pilot trial randomised (ratio 3:1) patients to HELP-COPD or usual care. We assessed the feasibility of using validated questionnaires as outcome measures and analysed the needs/actions recorded in the HELP-COPD records. Semi-structured interviews with a purposive sample of patients, carers and professionals explored the perceptions of HELP-COPD. Verbatim transcriptions and field notes were analysed using Normalisation Process Theory as a framework.Results:We randomised 32 patients (24 to HELP-COPD); 19 completed the study (death=3, ill-health=4, declined=6). The HELP-COPD record noted a mean of 1.6 actions/assessment, mostly provision of information or self-help actions: only five referrals were made. Most patients were positive about HELP-COPD, discussing their concerns and coping strategies in all domains, but the questionnaires were burdensome for some patients. Adaptation to their slowly progressive disability and a strong preference to rely on family support was reflected in limited acceptance of formal services. Professionals perceived HELP-COPD as addressing an important aspect of care, although timing overlapped with discharge planning.Conclusions:The HELP-COPD intervention was well received by patients and the concept resonated with professionals, although delivery post discharge overlapped with existing services. Integration of brief holistic care assessments in the routine primary care management of COPD may be more appropriate.

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 Bradshaws 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 researchers 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.

We need to stop looking for something that is not there

Dear Sirs, We have read with interest the paper by Epiphaniou et al.,1 which highlights the challenge of providing care for people with very severe chronic obstructive pulmonary disease (COPD) as they approach the end of their life, and agree with the response from Crawford et al.2 when they highlight that a key problem is ‘defining a transition point for the initiation of end-of-life care services’. However, we disagree with their conclusion that the solution is to try and identify yet more prognostic indicators in an attempt to identify a transition point. Our qualitative data3 found that identifying a time point for transition to palliative care had little resonance for people with COPD or their clinicians as they lived with their lifelong condition with its imperceptibly slow but inexorable decline. Our conclusion is echoed in a recent systematic synthesis of the experiences of living and dying with COPD,4 which conceives the trajectory of COPD as a ‘roller coaster’, with ‘no one specific event demarcating the ‘end-of-life’ stage, except perhaps the final acute exacerbation, which is difficult to predict and may be relatively brief’. Starting from the perspective of services designed for cancer, and looking in ever more detail for a transition point that is not there, is unlikely to be the solution. Maybe we need to take a step back, listen to the messages from the extensive qualitative literature3–5 and ask ourselves ‘if we started with a blank sheet of paper, how would supportive care for people with COPD look?’ We might then concentrate on developing services that integrate supportive care into the routine care of people living (perhaps for many years) with severe COPD.

Does sharing the electronic health record in the consultation enhance patient involvement? A mixed-methods study using multichannel video recording and in-depth interviews in primary care.

Sharing the electronic health‐care record (EHR) during consultations has the potential to facilitate patient involvement in their health care, but research about this practice is limited.

DIFFERENT DYINGS: LIVING AND DYING WITH CANCER, ORGAN FAILURE AND PHYSICAL FRAILTY

Background Recent controversy around the Liverpool Care Pathway has highlighted the need to listen to patient and carer perspectives. Better understanding of how different patient groups perceive their deteriorating health and approaching death can inform palliative care developments for all conditions. Aim To establish whether there are typical narratives of living with and dying from a variety of progressive conditions, that might provide insights into how best to provide effective, patient-centred care. Methods We used a narrative framework to synthesise eight methodologically comparable, longitudinal, interview studies undertaken by our research group. We examined the narratives of people dying from cancer (lung, glioma and colorectal cancer), organ failure (heart, liver and chronic obstructive pulmonary disease) and physical frailty, in socioeconomically and racially diverse populations in Scotland. Results The dataset comprised 828 in-depth interviews with 156 patients, 114 family caregivers and 170 health professionals. The cancer narratives typically had a clear beginning, middle and anticipated end. They gave a well-rehearsed account of the illness, with the dual themes of hope for recovery alongside fear of dying. In contrast, people with organ failure struggled to pinpoint when their illness began, or see meaningful patterns between acute events. Fewer spoke about death, hoping instead to avoid further deterioration. Some attributed their poor health to ‘old age’, others struggled to identify any specific illness. Frail older people were frustrated by their progressive loss of independence, fearing dementia or nursing home admission more than dying. Conclusions The typical cancer narrative is very different from those in frailty or organ failure. Palliative care as a concept may be too inextricably linked to imminent death to be acceptable and appropriate for these patients. We must diversify palliative care provision to meet the range of holistic needs of all patients approaching the end of life.

“How long does it take?” A mixed methods evaluation of computer-related work in GP consultations

Background Systematic reviews have suggested that time spent on computerrelated tasks increases consultation length. However, these reviews pre-date the current ubiquitous use of computers in U.K. general practice. Objective As part of a U.K. national study of the influence of information technology (IT) on the interaction between patients and healthcare professionals during consultations, we explored how IT functions affected time allocation and styles of computer use during general practitioner (GP) consultations. Methods We drew on multichannel video recording of consultations and measured consultation phases and the duration of computer-related tasks. We related measures of actual time to GP’s interpretation of computer use elicited in qualitative interviews. Results Our sample included recordings of 112 consultations from 6 GPs in three practices. The computer was used for about one-third of the greater consultation. However, its use was concentrated pre- and post- the patient consultation. The workflow of consultation was exemplified through six computer use cases. Most functionality was accepted and accommodated within the consultation, though disruptive and time-consuming tasks were generally delegated to administrative staff. Recognised styles of computer use (minimal, block and conversational) were apparent, but applied very flexibly by GPs according to the nature of the consultation. Conclusions In contrast to earlier reports, contemporary computer use does not appear to have lengthened consultations. GPs adopted different styles of computer use in different consultations, challenging classifications that seek to stereotype GP computer use. Designing systems that support this versatility require an understanding of the fluid application of computer use within consultation structure. What is already known Although computers have been used in U.K. general practice consultations for four decades, there are on-going concerns about the amount of time new computer functions may take. General practitioners (GPs) adopt different styles of computer use during patient consultations. What this paper adds This study found no evidence that computer use increases the length of consultation. The electronic health record is now the accepted norm in U.K. primary care, and in general, GPs do not express concerns about the time allocated to undertaking computer-related tasks within the consultation. Implications for clinical practice Despite some preferences in how they used the computer within the consultation, all the GPs readily adapted their style to suit the individual consultation. Understanding of the skilful versatile strategies employed by GPs may be a useful design resource and inform clinical training. Computer designers need to address the tension between ordered computer function and the fluid demands of a clinical consultation.

P207 Can Holistic Interventions Improve the Care of People with Severe Chronic Obstructive Pulmonary Disease (COPD)? A Systematic Review

Introduction and Objectives People with severe COPD have a long-recognised burden of disabling physical symptoms compounded by co-morbidity, psychological distress and social isolation. We aimed to review the effectiveness of interventions designed to deliver holistic care compared to usual care for people with severe COPD. Methods We searched 11 international electronic databases, three trial repositories and contacted a panel of international experts to locate published, unpublished and in-progress randomised controlled trials (RCTs), quasi-RCTs and controlled clinical trials (CCTs) that investigated holistic interventions designed to support patients with severe COPD in any healthcare context. Date range January 1990–March 2012; no language or geographical restrictions. Quality assessment and data extraction followed the Cochrane Collaboration method. Health-related quality of life (HRQoL) was the primary outcome. We used a piloted data extraction sheet and undertook narrative synthesis. Results From 2,866 potentially relevant papers, three trials met our inclusion criteria: two RCTs (from United States and Australia), and one CCT (from Thailand) studying a total of 216 patients. Critical appraisal identified a moderate (one RCT and the CCT) or high (one RCT) risk of bias. All interventions were led by nurses acting in a co-ordinating role (e.g. facilitating community support in Thailand, providing case-management in the US, or co-ordinating inpatient care in Australia). The community-based intervention in Thailand significantly improved HRQoL at three months compared to (limited) usual care (St George’s Respiratory Questionnaire: intervention: 30.3±19.4 vs control 52.4±21.3 p<0.001). Significant effects in the US trial were confined to ‘Physical functioning’ and ‘General health’ sub-domains of Medical Outcomes Study Short-Form-36 at three but not six-months. There were no significant changes in the Australian trial. Conclusions Some 15 years after reports first highlighted the substantial unmet needs of people with severe COPD, we have been unable to find robust trial evidence about interventions to address those needs. There is an urgent need to develop and evaluate interventions to deliver or enhance holistic care and improve the quality of life of people with severe COPD. Funding Dunhill Medical Trust. HP is supported by a PCRCA Fellowship (CSO, Scottish Government).