Joanna Davies

The changing demographics of inpatient hospice death: Population-based cross-sectional study in England, 1993–2012

Background: Studies in the United Kingdom and elsewhere have suggested inequality of hospice provision with respect to factors such as age, diagnosis and socio-economic position. How this has changed over time is unknown. Aim: To describe the factors associated with inpatient hospice death in England and examine how these have changed over time. Design: Population-based study. Multivariable Poisson regression compared 1998–2002, 2003–2007 and 2008–2012, with 1993–1997. Explanatory variables included individual factors (age, gender, marital status, underlying cause of death) and area-based measures of deprivation. Setting: Adults aged 25 years and over who died in inpatient hospice units in England between 1993 and 2002 (n = 446,615). Results: The annual number of hospice deaths increased from 17,440 in 1993 to 26,032 in 2012, accounting for 3.4% of all deaths in 1993 and 6.0% in 2012. A total of 50.6% of hospice decedents were men; the mean age was 69.9 (standard deviation: 12.4) years. The likelihood of hospice decedents being in the oldest age group (>85 years) increased over time (proportion ratio: 1.43, 95% confidence interval: 1.39 to 1.48 for 2008–2012 compared to 1993–1997). Just 5.2% of all hospice decedents had non-cancer diagnoses, though the likelihood of non-cancer conditions increased over time (proportion ratio: 1.41, 95% confidence interval: 1.37 to 1.46 for 2008–2012 compared to 1993–1997). The likelihood of hospice decedents being resident in the least deprived quintile increased over time (proportion ratio: 1.25, 95% confidence interval: 1.22 to 1.29 for 2008–2012 compared to 1993–1997). Conclusion: The increase in non-cancer conditions among hospice decedents is encouraging although absolute numbers remain very small. Deprivation trends are concerning and require further exploration.

Does Ethnicity Affect Where People with Cancer Die? A Population-Based 10 Year Study

Background Ageing is a growing issue for people from UK black, Asian and minority ethnic (BAME) groups. The health experiences of these groups are recognised as a ‘tracer’ to measure success in end of life patient-preferred outcomes that includes place of death (PoD). Aim To examine patterns in PoD among BAME groups who died of cancer. Material and Methods Mortality data for 93,375 cancer deaths of those aged ≥65 years in London from 2001–2010 were obtained from the UK Office for National Statistics (ONS). Decedents country of birth was used as a proxy for ethnicity. Linear regression examined trends in place of death across the eight ethnic groups and Poisson regression examined the association between country of birth and place of death. Results 76% decedents were born in the UK, followed by Ireland (5.9%), Europe(5.4%) and Caribbean(4.3%). Most deaths(52.5%) occurred in hospital, followed by home(18.7%). During the study period, deaths in hospital declined with an increase in home deaths; trend for time analysis for those born in UK(0.50%/yr[0.36–0.64%]p<0.001), Europe (1.00%/yr[0.64–1.30%]p<0.001), Asia(1.09%/yr[0.94–1.20%]p<0.001) and Caribbean(1.03%/yr[0.72–1.30%]p<0.001). However, time consistent gaps across the geographical groups remained. Following adjustment hospital deaths were more likely for those born in Asia(Proportion ratio(PR)1.12[95%CI1.08–1.15]p<0.001) and Africa(PR 1.11[95%CI1.07–1.16]p<0.001). Hospice deaths were less likely for those born in Asia(PR 0.73 [0.68–0.80] p<0.001), Africa (PR 0.83[95%CI0.74–0.93]p<0.001), and ‘other’ geographical regions (PR0.90[95% 0.82–0.98]p<0.001). Home deaths were less likely for those born in the Caribbean(PR0.91[95%CI 0.85–0.98]p<0.001). Conclusions Location of death varies by country of birth. BAME groups are more likely to die in a hospital and less likely to die at home or in a hospice. Further investigation is needed to determine whether these differences result from patient-centred preferences, or other environment or service-related factors. This knowledge will enable strategies to be developed to improve access to relevant palliative care and related services, where necessary.

“Nudge” in the clinical consultation – an acceptable form of medical paternalism?

BackgroundLibertarian paternalism is a concept derived from cognitive psychology and behavioural science. It is behind policies that frame information in such a way as to encourage individuals to make choices which are in their best interests, while maintaining their freedom of choice. Clinicians may view their clinical consultations as far removed from the realms of cognitive psychology but on closer examination there are a number of striking similarities.DiscussionEvidence has shown that decision making is prone to bias and not necessarily rational or logical, particularly during ill health. Clinicians will usually have an opinion about what course of action represents the patient’s best interests and thus may “frame” information in a way which “nudges” patients into making choices which are considered likely to maximise their welfare. This may be viewed as interfering with patient autonomy and constitute medical paternalism and appear in direct opposition to the tenets of modern practice. However, we argue that clinicians have a responsibility to try and correct “reasoning failure” in patients. Some compromise between patient autonomy and medical paternalism is justified on these grounds and transparency of how these techniques may be used should be promoted.SummaryOverall the extremes of autonomy and paternalism are not compatible in a responsive, responsible and moral health care environment, and thus some compromise of these values is unavoidable. Nudge techniques are widely used in policy making and we demonstrate how they can be applied in shared medical decision making. Whether or not this is ethically sound is a matter of continued debate but health care professionals cannot avoid the fact they are likely to be using nudge within clinical consultations. Acknowledgment of this will lead to greater self-awareness, reflection and provide further avenues for debate on the art and science of clinical communication.

Using routine data to improve palliative and end of life care

Palliative and end of life care is essential to healthcare systems worldwide, yet a minute proportion of research funding is spent on palliative and end of life care research. Routinely collected health and social care data provide an efficient and useful opportunity for evaluating and improving care for patients and families. There are excellent examples of routine data research in palliative and end of life care, but routine data resources are widely underutilised. We held four workshops on using routinely collected health and social care data in palliative and end of life care. Researchers presented studies from the UK, USA and Europe. The aim was to highlight valuable examples of work with routine data including work with death registries, hospital activity records, primary care data and specialist palliative care registers. This article disseminates that work, describes the benefits of routine data research and identifies major challenges for the future use of routine data, including; access to data, improving data linkage, and the need for more palliative and end of life care specific data.

Emergency department attendance by patients with cancer in the last month of life: a systematic review and meta-analysis

BACKGROUND Emergency department visits towards the end of life by people with cancer are increasing over time. This increase has occurred despite evidence of an association with poor patient outcomes, the majority of patients preferring home-based care, and significant overcrowding and capacity concerns for many emergency departments. We aimed to explore factors associated with emergency department attendance by cancer patients in the last month of life. METHODS We searched Medline, Embase, CINAHL, PsychINFO, and the Cochrane Library from inception to February, 2014, for studies investigating emergency department attendances by adult cancer patients (≥18 years) towards the end of life. No time or language limitations were applied. We performed meta-analysis of factors using a random-effects model, with results expressed as odds ratios (OR) for emergency department attendance. Sensitivity analysis explored heterogeneity. FINDINGS 30 studies were identified, reporting three demographic, five clinical, and 13 environmental factors; they included data from five countries and 1 181 842 patients. An increased likelihood of emergency department attendance was found for men versus women (OR 1·24, 95% CI 1·19-1·29), black versus white race (1·45, 1·40-1·50), patients with lung cancer versus other cancers (1·17, 1·10-1·23), and those of lowest versus highest socioeconomic status (1·15, 1·10-1·19). Patients receiving palliative care were less likely than those not receiving palliative care to attend the emergency department in the last month of life (OR 0·43, 95% CI 0·36-0·51). INTERPRETATION We have identified demographic (men, black race), clinical (lung cancer), and environmental (low socioeconomic status, no palliative care) factors associated with an increased risk of emergency department attendance. These findings could be used to develop screening interventions and assist policy makers in directing limited resources. Future studies should also investigate previously neglected areas of research, including psychosocial factors, and the emergency care preferences of patients and caregivers. FUNDING LH is a PhD clinical training fellow and funded through project BuildCARE which is supported by Cicely Saunders International and The Atlantic Philanthropies, and led by Kings College London, Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, UK.

Patterns of dignity-related distress at the end of life: A cross-sectional study of patients with advanced cancer and care home residents

Background: To provide effective palliative care in different settings, it is important to understand and identify the sources of dignity-related distress experienced by people nearing the end of life. Aim: To describe and compare the sources of dignity-related distress reported by cancer patients and care home residents. Design: Secondary analysis of merged data. Participants completed the Patient Dignity Inventory (assessing 25 sources of dignity-related distress) and measures of quality of life and depression. Setting/participants: A total of 45 adult patients with advanced cancer referred to hospital-based palliative care teams in London, United Kingdom, and 60 residents living in one of 15 care homes in London. Results: Care home residents were older and had poorer functioning. Both groups reported a wide range of dignity-related problems. Although the number or problems reported on the Patient Dignity Inventory was similar for the two groups (mean (standard deviation): 5.9 (5.5) for cancer patients and 4.1 (4.3) for care home residents, p = 0.07), there was a tendency for more cancer patients to report some existential problems. Experiencing physically distressing symptoms and functional limitations were prevalent problems for both groups. Patient Dignity Inventory problems were associated with poorer performance status and functioning for residents, with age and cognitive impairment for cancer patients and with poorer quality of life and depression for both groups. Conclusion: Although characteristics of the samples differed, similarities in the dignity-related problems reported by cancer patients and care home residents support research suggesting a common pathway towards death for malignant and non-malignant disease. A wider understanding of the sources of dignity-related distress would help clinicians provide more effective end-of-life care.

Phase of Illness in palliative care: Cross-sectional analysis of clinical data from community, hospital and hospice patients:

Background: Phase of Illness describes stages of advanced illness according to care needs of the individual, family and suitability of care plan. There is limited evidence on its association with other measures of symptoms, and health-related needs, in palliative care. Aims: The aims of the study are as follows. (1) Describe function, pain, other physical problems, psycho-spiritual problems and family and carer support needs by Phase of Illness. (2) Consider strength of associations between these measures and Phase of Illness. Design and setting: Secondary analysis of patient-level data; a total of 1317 patients in three settings. Function measured using Australia-modified Karnofsky Performance Scale. Pain, other physical problems, psycho-spiritual problems and family and carer support needs measured using items on Palliative Care Problem Severity Scale. Results: Australia-modified Karnofsky Performance Scale and Palliative Care Problem Severity Scale items varied significantly by Phase of Illness. Mean function was highest in stable phase (65.9, 95% confidence interval = 63.4–68.3) and lowest in dying phase (16.6, 95% confidence interval = 15.3–17.8). Mean pain was highest in unstable phase (1.43, 95% confidence interval = 1.36–1.51). Multinomial regression: psycho-spiritual problems were not associated with Phase of Illness (χ2 = 2.940, df = 3, p = 0.401). Family and carer support needs were greater in deteriorating phase than unstable phase (odds ratio (deteriorating vs unstable) = 1.23, 95% confidence interval = 1.01–1.49). Forty-nine percent of the variance in Phase of Illness is explained by Australia-modified Karnofsky Performance Scale and Palliative Care Problem Severity Scale. Conclusion: Phase of Illness has value as a clinical measure of overall palliative need, capturing additional information beyond Australia-modified Karnofsky Performance Scale and Palliative Care Problem Severity Scale. Lack of significant association between psycho-spiritual problems and Phase of Illness warrants further investigation.

Development and validation of a casemix classification to predict costs of specialist palliative care provision across inpatient hospice, hospital and community settings in the UK: A study protocol

Introduction Provision of palliative care is inequitable with wide variations across conditions and settings in the UK. Lack of a standard way to classify by case complexity is one of the principle obstacles to addressing this. We aim to develop and validate a casemix classification to support the prediction of costs of specialist palliative care provision. Methods and analysis Phase I: A cohort study to determine the variables and potential classes to be included in a casemix classification. Data are collected from clinicians in palliative care services across inpatient hospice, hospital and community settings on: patient demographics, potential complexity/casemix criteria and patient-level resource use. Cost predictors are derived using multivariate regression and then incorporated into a classification using classification and regression trees. Internal validation will be conducted by bootstrapping to quantify any optimism in the predictive performance (calibration and discrimination) of the developed classification. Phase II: A mixed-methods cohort study across settings for external validation of the classification developed in phase I. Patient and family caregiver data will be collected longitudinally on demographics, potential complexity/casemix criteria and patient-level resource use. This will be triangulated with data collected from clinicians on potential complexity/casemix criteria and patient-level resource use, and with qualitative interviews with patients and caregivers about care provision across difference settings. The classification will be refined on the basis of its performance in the validation data set. Ethics and dissemination The study has been approved by the National Health Service Health Research Authority Research Ethics Committee. The results are expected to be disseminated in 2018 through papers for publication in major palliative care journals; policy briefs for clinicians, commissioning leads and policy makers; and lay summaries for patients and public. Trial registration number ISRCTN90752212.

The changing demographics of inpatient hospice death: population-based, cross-sectional study in England, 1993–2012

BACKGROUND The provision of good quality and equitable end-of-life care is high on the public and political agenda. Hospice is second only to home in terms of preference for place of death and scores higher than any other setting for quality of care. However, hospices have been criticised for inequality of access with respect to age, diagnosis, and socioeconomic status. We aimed to describe the demographic characteristics associated with hospice death in England, and assessed how these characteristics have changed over time. METHODS In this population-based study (part of the GUIDE_Care project), we included all adults older than 25 years who had died in inpatient hospices in England from 1993 to 2002. We compared deaths in 1998-2002, 2003-07, and 2008-12, with those in 1993-97 using multivariable Poisson regression. Explanatory variables included individual factors (age, sex, marital status, underlying cause of death) and measures of deprivation based on area of residence. FINDINGS 446 615 deaths were included. The annual number of hospice deaths increased from 17 440 in 1993 to 26 032 in 2012, accounting for 3·4% of 519 313 deaths in England in 1993, and 6·0% of 434 105 deaths in 2012. 226 188 hospice decedents (50·6%) were men (mean age 69·9 years, SD 12·4). The likelihood of hospice decedents being in the oldest age group (>85 years) increased from 1993-97 to 2008-12 (Poisson ratio 1·43, 95% CI 1·39-1·48). Only 23 258 hospice decedents (5·2%) had non-cancer diagnoses, though the likelihood of non-cancer conditions increased during the same time period (1·41, 1·37-1·46). The likelihood of hospice decedents being resident in the least deprived quintile also increased (1·25, 1·22-1·29). INTERPRETATION Inequalities among hospice decedents by diagnosis have decreased, although the absolute numbers of non-cancer diagnoses remain very small. Trends in deprivation are concerning, and require further exploration. FUNDING The GUIDE_Care project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme (project number 09/2000/58).

A framework for complexity in palliative care: A qualitative study with patients, family carers and professionals:

Background: Palliative care patients are often described as complex but evidence on complexity is limited. We need to understand complexity, including at individual patient-level, to define specialist palliative care, characterise palliative care populations and meaningfully compare interventions/outcomes. Aim: To explore palliative care stakeholders’ views on what makes a patient more or less complex and insights on capturing complexity at patient-level. Design: In-depth qualitative interviews, analysed using Framework analysis. Participants/setting: Semi-structured interviews across six UK centres with patients, family, professionals, managers and senior leads, purposively sampled by experience, background, location and setting (hospital, hospice and community). Results: 65 participants provided an understanding of complexity, which extended far beyond the commonly used physical, psychological, social and spiritual domains. Complexity included how patients interact with family/professionals, how services’ respond to needs and societal perspectives on care. ‘Pre-existing’, ‘cumulative’ and ‘invisible’ complexity are further important dimensions to delivering effective palliative and end-of-life care. The dynamic nature of illness and needs over time was also profoundly influential. Adapting Bronfenbrenner’s Ecological Systems Theory, we categorised findings into the microsystem (person, needs and characteristics), chronosystem (dynamic influences of time), mesosystem (interactions with family/health professionals), exosystem (palliative care services/systems) and macrosystem (societal influences). Stakeholders found it acceptable to capture complexity at the patient-level, with perceived benefits for improving palliative care resource allocation. Conclusion: Our conceptual framework encompasses additional elements beyond physical, psychological, social and spiritual domains and advances systematic understanding of complexity within the context of palliative care. This framework helps capture patient-level complexity and target resource provision in specialist palliative care.