Narrative review: what constitutes contemporary, high-quality end-of-life care and can lessons be learned from medieval history?

BACKGROUND AND OBJECTIVE: In modern Britain, palliative and end-of-life care is governed by quality standards and guidance, which should consider spiritual and psychological needs. However, there are significant gaps in provision of services which was highlighted during the coronavirus disease 2019 (COVID-19) pandemic where many individuals and families suffered profound spiritual and existential distress. Significant gaps remain in the provision of services to support patients with spiritual and psychological needs which can affect the management of physical symptoms. During the medieval period in Western Europe, it was important to prepare well for death throughout life. It has been suggested that lessons may be learned from medieval preparations for death which might benefit those approaching end-oflife in contemporary society. It is therefore timely to consider medieval attitudes to death and reflect on how these might inform modern end-of-life care. The objective of this review is to synthesise literature addressing modern end-of-life care in the UK and contrast this with literature on preparations for death during the medieval period in Western Europe. Our aim is to determine whether there is wisdom to be gained from history which could inform our approaches to end-of-life care today. METHODS: Using online databases and broad keyword searches along with experts in the field of medieval history, we identified literature and translations of texts with a focus on preparations for death during both periods. These were narratively synthesised and discussed. KEY CONTENT AND FINDINGS: A key finding is that the medieval attitude to death was as an integral part of life, whereas in modern society death is not usually considered until the situation arises. The review highlights a need for a better understanding of the individuality of spiritual and existential needs during end-of-life care in modern society, which will vary according to individual choice, culture, societal group, religion, and belief. CONCLUSIONS: The lessons we can learn from our medieval counterparts include the need for lifelong and individual preparations for the end of life, with emphasis on spiritual needs. Alongside palliative interventions, we need to take time to appreciate what gives individuals spiritual support and provide the resources to facilitate this.

Supporting Pain Self-Management in Patients With Cancer: App Development Based on a Theoretical and Evidence-Driven Approach.

BACKGROUND: To inform the development of an intervention, it is essential to have a well-developed theoretical understanding of how an intervention causes change, as stated in the UK Medical Research Council guidelines for developing complex interventions. Theoretical foundations are often ignored in the development of mobile health apps intended to support pain self-management for patients with cancer. OBJECTIVE: This study aims to systematically set a theory- and evidence-driven design for a pain self-management app and specify the app's active features. METHODS: The Behavior Change Wheel (BCW) framework, a step-by-step theoretical approach to the development of interventions, was adopted to achieve the aim of this study. This started by understanding and identifying sources of behavior that could be targeted to support better pain management. Ultimately, the application of the BCW framework guided the identification of the active contents of the app, which were characterized using the Behavior Change Technique Taxonomy version 1. RESULTS: The theoretical analysis revealed that patients may have deficits in their capability, opportunity, and motivation that prevent them from performing pain self-management. The app needs to use education, persuasion, training, and enablement intervention functions because, based on the analysis, they were found the most likely to address the specified factors. Eighteen behavior change techniques were selected to describe precisely how the intervention functions can be presented to induce the desired change regarding the intervention context. In other words, they were selected to form the active contents of the app, potentially reducing barriers and serving to support patients in the self-management of pain while using the app. CONCLUSIONS: This study fully reports the design and development of a pain self-management app underpinned by theory and evidence and intended for patients with cancer. It provides a model example of the BCW framework application for health app development. The work presented in this study is the first systematic theory- and evidence-driven design for a pain app for patients with cancer. This systematic approach can support clarity in evaluating the intervention's underlying mechanisms and support future replication.

PROMs for Pain in Adult Cancer Patients: A Systematic Review of Measurement Properties.

CONTEXT: Pain is one of the most devastating symptoms for cancer patients. One third of patients who experience pain do not receive effective treatment. A key barrier to effective pain management is lack of routine measurement and monitoring of pain. Patient-reported outcome measures (PROMs) are recommended for measuring cancer pain. However, evidence to guide the selection of the most appropriate measure to identify and monitor cancer pain is limited. A systematic review of measurement properties of PROMs for pain in cancer patients is needed to identify the best validated measure for adoption to an electronic platform. OBJECTIVES: To systematically review measurement properties of PROMs used for adult cancer patients to measure pain and, as a secondary goal, to investigate the evidence of validated mobile health (mHealth) applications used to measure pain (registration number: CRD42017065575). METHODS: Medline, Embase, and the Cumulative Index to Nursing and Allied Health Literature (CINAHL) were systematically searched in March 2018 for studies examining measurement properties for PROMs for pain in adult cancer patients. The methodological quality of the studies and their results were appraised using the Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN) checklist and specific measurement properties criteria, respectively. RESULTS: Sixteen studies evaluating 8 instruments were included. No studies using a PROM in an mHealth application were identified. The methodological quality of the measurement properties ranged between poor and fair. No instrument showed strong positive evidence for all the evaluated measurement properties. Based on the available evidence, the Brief Pain Inventory-Short Form (BPI-SF) had the strongest evidence to support its selection for the measurement of cancer pain. CONCLUSION: The BPI-SF was the best performing measure across all properties evaluated through COSMIN. Better quality validation studies of PROMs for cancer pain are needed to explore the full range of measurement properties. Utilizing mHealth applications to measure pain in cancer patients is an innovative approach worthy of further investigation.

Access to hospital and community palliative care for patients with advanced cancer: A longitudinal population analysis.

BACKGROUND: The UK National Health Service is striving to improve access to palliative care for patients with advanced cancer however limited information exists on the level of palliative care support currently provided in the UK. We aimed to establish the duration and intensity of palliative care received by patients with advanced cancer and identify which cancer patients are missing out. METHODS: Retrospective cancer registry, primary care and secondary care data were obtained and linked for 2474 patients who died of cancer between 2010 and 2012 within a large metropolitan UK city. Associations between the type, duration, and amount of palliative care by demographic characteristics, cancer type, and therapies received were assessed using Chi-squared, Mann-Whitney or Kruskal-Wallis tests. Multinomial multivariate logistic regression was used to assess the odds of receiving community and/or hospital palliative care compared to no palliative care by demographic characteristics, cancer type, and therapies received. RESULTS: Overall 64.6% of patients received palliative care. The average palliative care input was two contacts over six weeks. Community palliative care was associated with more palliative care events (p<0.001) for a longer duration (p<0.001). Patients were less likely to receive palliative care if they were: male (p = 0.002), aged 80 years or over (p<0.05), diagnosed with lung cancer (p<0.05), had not received an opioid prescription (p<0.001), or had not received chemotherapy (p<0.001). Patients given radiotherapy were more likely to receive community only palliative care compared to no palliative care (Odds Ratio = 1.49, 95% Confidence Interval = 1.16-1.90). CONCLUSION: Timely supportive care for cancer patients is advocated but these results suggest that older patients and those who do not receive anti-cancer treatment or opioid analgesics miss out. These patients should be targeted for assessment to identify unmet needs which could benefit from palliative care input.

Older age is associated with less cancer treatment: a longitudinal study of English cancer patients.

Background: making informed decisions about cancer care provision for older cancer patients can be challenging and complex. Evidence suggests cancer care varies by age, however the relationship between age and care experiences from diagnosis to death for cancer patients within the UK has not previously been examined in detail. Patients and methods: retrospective cohort linking cancer registry and secondary care data for 13,499 adult cancer patients who died between January 2005 and December 2011. Cancer therapies (chemotherapy, radiotherapy, surgery), hospital palliative care referrals, hospital admissions and place of death were compared between age groups using multivariable regression models. Trends in cancer care over time, overall and within age groups were also assessed. Results: compared with adult patients under 60 years, patients aged 80 years and over were less likely to receive chemotherapy, radiotherapy, a hospital palliative care referral; or be admitted to hospital but were more likely to die in a care home. Overall, the percentage of patients receiving chemotherapy, surgery, hospital palliative care referrals and hospital admissions have increased while deaths in hospital have decreased. Deaths at home have increased for patients aged 80 years and over. Conclusion: older patients are less likely to receive cancer therapies or hospital palliative care before death. Further research is needed to identify the extent to which these results reflect unmet need.

Duration and determinants of hospice-based specialist palliative care: A national retrospective cohort study.

BACKGROUND: Understanding service provision for patients with advanced disease is a research priority, with a need to identify barriers that limit widespread integration of palliative care. AIM: To identify patient and organisational factors that influence the duration of hospice-based palliative care in the United Kingdom prior to death. DESIGN: This is a retrospective cohort study. SETTING/PARTICIPANTS: A total of 64 UK hospices providing specialist palliative care inpatient beds and community services extracted data for all adult decedents (aged over 17 years) with progressive, advanced disease, with a prior referral (e.g. inpatient, community teams, and outpatient) who died between 1 January 2015 and 31 December 2015. Data were requested for factors relating to both the patient and hospice site. RESULTS: Across 42,758 decedents, the median time from referral to death was 48 days. Significant differences in referral to death days were found for those with cancer (53 days) and non-cancer (27 days) ( p < 0.0001). As age increases, the median days from referral to death decreases: for those under 50 years (78 days), 50-74 years (59 days), and 75 years and over (39 days) ( p = 0.0001). An adjusted multivariable negative binomial model demonstrated increasing age persisting as a significant predictor of fewer days of hospice care, as did being male, having a missing ethnicity classification and having a non-cancer diagnosis ( p < 0.001). CONCLUSION: Despite increasing rhetoric around early referral, patients with advanced disease are receiving referrals to hospice specialist palliative care very late in their illness trajectory. Age and diagnosis persist as determinants of duration of hospice specialist palliative care before death.

Improving the management of pain from advanced cancer in the community: study protocol for a pragmatic multicentre randomised controlled trial.

INTRODUCTION: For patients with advanced cancer, research shows that pain is frequent, burdensome and undertreated. Evidence-based approaches to support cancer pain management have been developed but have not been implemented within the context of the UK National Health Service. This protocol is for a pragmatic multicentre randomised controlled trial (RCT) to assess feasibility, acceptability, effectiveness and cost-effectiveness for a multicomponent intervention for pain management in patients with advanced cancer. METHODS AND ANALYSIS: This trial will assess the feasibility of implementation and uptake of evidence-based interventions, developed and piloted as part of the Improving the Management of Pain from Advanced Cancer in the Community Programme grant, into routine clinical practice and determine whether there are potential differences with respect to patient-rated pain, patient pain knowledge and experience, healthcare use, quality of life and cost-effectiveness. 160 patients will receive either the intervention (usual care plus supported self-management) delivered within the oncology clinic and palliative care services by locally assigned community palliative care nurses, consisting of a self-management educational intervention and eHealth intervention for routine pain assessment and monitoring; or usual care. The primary outcomes are to assess implementation and uptake of the interventions, and differences in terms of pain severity. Secondary outcomes include pain interference, participant pain knowledge and experience, and cost-effectiveness. Outcome assessment will be blinded and patient-reported outcome measures collected via post at 6 and 12 weeks following randomisation. ETHICS AND DISSEMINATION: This RCT has the potential to significantly influence National Health Service delivery to community-based patients with pain from advanced cancer. We aim to provide definitive evidence of whether two simple interventions delivered by community palliative care nurse in palliative care that support-self-management are clinically effective and cost-effective additions to standard community palliative care. TRIAL REGISTRATION NUMBER: ISRCTN18281271; Pre-results.

Is palliative care support associated with better quality end-of-life care indicators for patients with advanced cancer? A retrospective cohort study.

OBJECTIVES: This study aimed to establish the association between timing and provision of palliative care (PC) and quality of end-of-life care indicators in a population of patients dying of cancer. SETTING: This study uses linked cancer patient data from the National Cancer Registry, the electronic medical record system used in primary care (SystmOne) and the electronic medical record system used within a specialist regional cancer centre. The population resided in a single city in Northern England. PARTICIPANTS: Retrospective data from 2479 adult cancer decedents who died between January 2010 and February 2012 were registered with a primary care provider using the SystmOne electronic health record system, and cancer was certified as a cause of death, were included in the study. RESULTS: Linkage yielded data on 2479 cancer decedents, with 64.5% who received at least one PC event. Decedents who received PC were significantly more likely to die in a hospice (39.4% vs 14.5%, P<0.005) and less likely to die in hospital (23.3% vs 40.1%, P<0.05), and were more likely to receive an opioid (53% vs 25.2%, P<0.001). PC initiated more than 2 weeks before death was associated with avoiding a hospital death (≥2 weeks, P<0.001), more than 4 weeks before death was associated with avoiding emergency hospital admissions and increased access to an opioid (≥4 weeks, P<0.001), and more than 33 weeks before death was associated with avoiding late chemotherapy (≥33 weeks, no chemotherapy P=0.019, chemotherapy over 4 weeks P=0.007). CONCLUSION: For decedents with advanced cancer, access to PC and longer duration of PC were significantly associated with better end-of-life quality indicators.