Age and cancer type: associations with increased odds of receiving a late diagnosis in people with advanced cancer.

PURPOSE: In order to deliver appropriate and timely care planning and minimise avoidable late diagnoses, clinicians need to be aware of which patients are at higher risk of receiving a late cancer diagnosis. We aimed to determine which demographic and clinical factors are associated with receiving a 'late' cancer diagnosis (within the last 12 weeks of life). METHOD: Retrospective cohort study of 2,443 people who died from cancer ('cancer decedents') in 2013-2015. Demographic and cancer registry datasets linked using patient-identifying Community Health Index numbers. Analysis used binary logistic regression, with univariate and adjusted odds ratios (SPSS v25). RESULTS: One third (n = 831,34.0%) received a late diagnosis. Age and cancer type were significantly associated with late cancer diagnosis (p < 0.001). Other demographic factors were not associated with receiving a late diagnosis. Cancer decedents with lung cancer (Odds Ratios presented in abstract are the inverse of those presented in the main text, where lung cancer is the reference category. Presented as 1/(OR multivariate)) were more likely to have late diagnosis than those with bowel (95% Confidence Interval [95%CI] Odds Ratio (OR)1.52 (OR1.12 to 2.04)), breast or ovarian (95%CI OR3.33 (OR2.27 to 5.0) or prostate (95%CI OR9.09 (OR4.0 to 20.0)) cancers. Cancer decedents aged > 85 years had higher odds of late diagnosis (95%CI OR3.45 (OR2.63 to 4.55)), compared to those aged < 65 years. CONCLUSIONS: Cancer decedents who were older and those with lung cancer were significantly more likely to receive late cancer diagnoses than those who were younger or who had other cancer types.

Free-text analysis of general practice out-of-hours (GPOOH) use by people with advanced cancer: an analysis of coded and uncoded free-text data.

BACKGROUND: People with advanced cancer frequently use the GP out-of-hours (GPOOH) service. Considerable amounts of routine GPOOH data are uncoded. Therefore, these data are omitted from existing healthcare datasets. AIM: To conduct a free-text analysis of a GPOOH dataset, to identify reasons for attendance and care delivered through GPOOH to people with advanced cancer. DESIGN AND SETTING: An analysis of a GPOOH healthcare dataset was undertaken. It contained all coded and free- text information for 5749 attendances from a cohort of 2443 people who died from cancer in Tayside, Scotland, from 2013-2015. METHOD: Random sampling methods selected 575 consultations for free-text analysis. Each consultation was analysed by two independent reviewers to determine the following: assigned presenting complaints; key and additional palliative care symptoms recorded in free text; evidence of anticipatory care planning; and free-text recording of dispensed medications. Inter-rater reliability concordance was established through Kappa testing. RESULTS: More than half of all coded reasons for attendance (n = 293; 51.0%) were 'other' or 'missing'. Free-text analysis demonstrated that nearly half (n = 284; 49.4%) of GPOOH attendances by people with advanced cancer were for pain or palliative care. More than half of GPOOH attendances (n = 325; 56.5%) recorded at least one key or additional palliative care symptom in free text, with the commonest being breathlessness, vomiting, cough, and nausea. Anticipatory care planning was poorly recorded in both coded and uncoded records. Uncoded medications were dispensed in more than one- quarter of GPOOH consultations. CONCLUSION: GPOOH delivers a substantial amount of pain management and palliative care, much of which is uncoded. Therefore, it is unrecognised and under-reported in existing large healthcare data analyses.

Community prescribing trends and prevalence in the last year of life, for people who die from cancer.

BACKGROUND: People who die from cancer ('cancer decedents') may latterly experience unpleasant and distressing symptoms. Prescribing medication for pain and symptom control is essential for good-quality palliative care; however, such provision is variable, difficult to quantify and poorly characterised in current literature. This study aims to characterise trends in prescribing analgesia, non-analgesic palliative care medication and non-palliative medications, to cancer decedents, in their last year of life, and to assess any associations with demographic or clinical factors. METHODS: This descriptive study, analysed all 181,247 prescriptions issued to a study population of 2443 cancer decedents in Tayside, Scotland (2013-2015), in the last year of life, linking prescribing data to demographic, and cancer registry datasets using the unique patient-identifying Community Health Index (CHI) number. Anonymised linked data were analysed in Safe Haven using chi-squared test for trend, binary logistic regression and Poisson regression in SPSSv25. RESULTS: In their last year of life, three in four cancer decedents were prescribed strong opioids. Two-thirds of those prescribed opioids were also prescribed laxatives and/or anti-emetics. Only four in ten cancer decedents were prescribed all medications in the 'Just in Case' medication categories and only one in ten was prescribed breakthrough analgesia in the last year of life. The number of prescriptions for analgesia and palliative care drugs increased in the last 12 weeks of life. The number of prescriptions for non-palliative care medications, including anti-hypertensives, statins and bone protection, decreased over the last year, but was still substantial. Cancer decedents who were female, younger, or had lung cancer were more likely to be prescribed strong opioids; however, male cancer decedents had higher odds of being prescribed breakthrough analgesia. Cancer decedents who had late diagnoses had lower odds of being prescribed strong opioids. CONCLUSIONS: A substantial proportion of cancer decedents were not prescribed strong opioids, breakthrough medication, or medication to alleviate common palliative care symptoms (including 'Just in Case' medication). Many patients continued to be prescribed non-palliative care medications in their last days and weeks of life. Age, gender, cancer type and timing of diagnosis affected patients' odds of being prescribed analgesic and non-analgesic palliative care medication.

Death from cancer: frequent unscheduled care.

OBJECTIVE: To examine the demographic, clinical, and temporal factors associated with cancer decedents being a frequent or very frequent unscheduled care (GP-general practice Out-Of-Hours (GPOOH) and Accident & Emergency (A&E)) attender, in their last year of life. METHODS: Retrospective cohort study, of all 2443 cancer decedents in Tayside, Scotland, over 30- months period up to 06/2015, comparing frequent attenders (5-9 attendances/year) and very frequent attenders (≥10 attendances/year) to infrequent attenders (1-4 attendances/year) and non-attenders. Clinical and demographic datasets were linked to routinely-collected clinical data using the Community Health Index number. Anonymised linked data were analysed in SafeHaven, using binary/multinomial logistic regression, and Generalised Estimating Equations analysis. RESULTS: Frequent attenders were more likely to be older, and have upper gastrointestinal (GI), haematological, breast and ovarian malignancies, and less likely to live in accessible areas or have a late cancer diagnosis. They were more likely to use GPOOH than A&E, less likely to have face-to-face unscheduled care attendances, and less likely to be admitted to hospital following unscheduled care attendance. CONCLUSIONS: Age, cancer type, accessibility and timing of diagnosis relative to death were associated with increased likelihood of being a frequent or very frequent attender at unscheduled care.

Factors associated with unscheduled care use by cancer decedents: a systematic review with narrative synthesis.

BACKGROUND: People who die from cancer (cancer decedents) may experience unpleasant and distressing symptoms which cause them to present to unscheduled care. Unscheduled care is unplanned care delivered by general practitioner out-of-hours and emergency departments. Use of unscheduled care can disrupt treatment plans, leading to a disjointed patient care and suboptimal outcomes. OBJECTIVES: This systematic review aimed to identify factors associated with unscheduled care use by cancer decedents. METHOD: Systematic review with narrative synthesis of seven electronic databases (PubMed; Medline; Embase; Cochrane Database of Systematic Reviews; Cochrane Central Register of Controlled Trials; Web of Science; Cumulative Index to Nursing and Allied Health Literature) from inception until 01 January 2020. All observational and experimental studies were included, irrespective of their research design. RESULTS: The search yielded 238 publications included at full-text, of which 47 were included in the final review and synthesis. Unscheduled care use by cancer decedents was influenced by multiple factors, synthesised into themes: demography, clinical and patient, temporal, prescribing and systems. Cancer decedents who were older, men, had comorbidities, or lung cancer, were most likely to use unscheduled care. Unscheduled care presentations were commonly due to pain, breathlessness and gastrointestinal symptoms. Low continuity of care, and oncology-led care were associated with greater unscheduled care use. Access to palliative care, having an up-to-date palliative care plan, and carer education were associated with less unscheduled care use. CONCLUSION: The review identifies multiple factors associated with unscheduled care use by cancer decedents. Understanding these factors can inform future practice and policy developments, in order to appropriately target future interventions, optimise service delivery and improve the patient journey. PROSPERO REGISTRATION NUMBER: CRD42016047231.

Symptom burden and clinical profile of COVID-19 deaths: a rapid systematic review and evidence summary.

The spread of pandemic COVID-19 has created unprecedented need for information. The pandemic is the cause of significant mortality and with this the need for rapidly disseminated information for palliative care professionals regarding the prevalence of symptoms, their intensity, their resistance or susceptibility to symptom control and the mode of death for patients. METHODS: We undertook a systematic review of published evidence for symptoms in patients with COVID-19 (with a specific emphasis on symptoms at end of life) and on modes of death. Inclusion: prospective or retrospective studies detailing symptom presence and/or cause or mode of death from COVID-19. RESULTS: 12 papers met the inclusion criteria and gave details of symptom burden: four of these specifically in the dying and two detailed the cause or mode of death. Cough, breathlessness, fatigue and myalgia are significant symptoms in people hospitalised with COVID-19. Dyspnoea is the most significant symptom in the dying. The mode of death was described in two papers and is predominantly through respiratory or heart failure. CONCLUSIONS: There remains a dearth of information regarding symptom burden and mode of death to inform decisions regarding end-of-life care in patients dying with COVID-19. Rapid data gathering on the mode of death and the profile of symptoms in the dying and their prevalence and severity in areas where COVID-19 is prevalent will provide important intelligence for clinicians. This should be done urgently, within ethical norms and the practicalities of a public health, clinical and logistical emergency.

A narrative review of facilitating and inhibiting factors in advance care planning initiation in people with dementia.

PURPOSE OF THE REVIEW: To identify and assess factors that affect the decisions to initiate advance care planning (ACP) amongst people living with dementia (PwD). METHODS: A narrative review was conducted. A keyword search of Medline, CINAHL PsycINFO, and Web of Sciences databases produced 22,234 articles. Four reviewers independently applying inclusion/exclusion criteria resulted in 39 articles. Discrepancies were settled in discussion. RESULTS: Twenty-eight primary studies and eleven review articles remained. Narrative analysis generated five categories of facilitating and inhibitory factors: people with dementia, family orientation, healthcare professionals (HCP), systemic and contextual factors, and time factors. Key facilitators of ACP initiation were (i) healthcare settings with supportive policies and guidelines, (ii) family members and HCPs who have a supportive relationship with PwD, and (iii) HCPs who received ACP education. Key inhibitors were: (i) lack of knowledge about the dementia trajectory in stakeholders, (ii) lack of ACP knowledge, and (iii) unclear timing to initiate an ACP. CONCLUSION: This review highlighted the main challenges associated with optimal ACP initiation with PwD. To encourage effective ACP initiation with PwD, succinct policies and guidelines for clinical commissioners are needed. ACP also needs to be discussed with family members in an informal, iterative manner. More research is required on initiation timing given the disease trajectory and changing family dynamics.

Factors affecting use of unscheduled care for people with advanced cancer: a retrospective cohort study in Scotland.

BACKGROUND: People with advanced cancer frequently attend unscheduled care, but little is known about the factors influencing presentations. Most research focuses on accident and emergency (A&E) and does not consider GP out-of-hours (GPOOH). AIM: To describe the frequency and patterns of unscheduled care use by people with cancer in their last year of life and to examine the associations of demographic and clinical factors with unscheduled care attendance. DESIGN AND SETTING: Retrospective cohort study of all 2443 people who died from cancer in Tayside, Scotland, during 2012-2015. Clinical population datasets were linked to routinely collected clinical data using the Community Health Index (CHI) number. METHOD: Anonymised CHI-linked data were analysed in SafeHaven, with descriptive analysis, using binary logistic regression for adjusted associations. RESULTS: Of the people who died from cancer, 77.9% (n = 1904) attended unscheduled care in the year before death. Among unscheduled care users, most only attended GPOOH (n = 1070, 56.2%), with the rest attending A&E only (n = 204, 10.7%), or both (n = 630, 33.1%). Many attendances occurred in the last week (n =1360, 19.7%), last 4 weeks (n = 2541, 36.7%), and last 12 weeks (n = 4174, 60.3%) of life. Age, sex, deprivation, and cancer type were not significantly associated with unscheduled care attendance. People living in rural areas were less likely to attend unscheduled care: adjusted odds ratio (aOR) 0.64 (95% confidence interval = 0.50 to 0.82). Pain was the commonest coded clinical reason for presenting (GPOOH: n = 482, 10.5%; A&E: n = 336, 28.8%). Of people dying from cancer, n = 514, 21.0%, were frequent users (≥5 attendances/year), and accounted for over half (n = 3986, 57.7%) of unscheduled care attendances. CONCLUSION: Unscheduled care attendance by people with advanced cancer was substantially higher than previously reported, increased dramatically towards the end of life, was largely independent of demographic factors and cancer type, and was commonly for pain and palliative care.

The Safer Prescription of Opioids Tool (SPOT): A Novel Clinical Decision Support Digital Health Platform for Opioid Conversion in Palliative and End of Life Care-A Single-Centre Pilot Study.

Opioid errors are a leading cause of patient harm. Active failures in opioid dose conversion can contribute to error. Conversion is complex and is currently performed manually using tables of approximate equivalence. Apps that offer opioid dose double-checking are available but there are concerns about their accuracy and clinical validation. This study evaluated a novel opioid dose conversion app, The Safer Prescription of Opioids Tool (SPOT), a CE-marked Class I medical device, as a clinician decision support (CDS) platform. This single-centre prospective clinical utility pilot study followed a mixed methods design. Prescribers completed an initial survey exploring their current opioid prescribing practice. Thereafter prescribers used SPOT for opioid dosage conversions in parallel to their usual clinical practice, then evaluated SPOT through a survey and focus group. SPOT matched the Gold Standard result in 258 of 268 (96.3%) calculations. The 10 instances (3.7%) when SPOT did not match were due to a rounding error. Users had a statistically significant increase in confidence in prescribing opioids after using SPOT. Focus group feedback highlighted benefits in Quality Improvement and Safety when using SPOT. SPOT is a safe, reliable and validated CDS that has potential to reduce harms from opioid dosing errors.

Operationalizing reflexivity to improve the rigor of palliative care research.

Reflective practice involves deliberate consideration of actions, attitudes and behaviors. Reflexivity in research is considered important for ensuring that research is ethically and rigorously conducted. This paper details the challenges of conducting research involving patients with palliative care needs within the acute hospital environment. It discusses the contribution of reflexivity to a pilot study using the Patient Dignity Question (PDQ) "What do I need to know about you as a person to take the best care of you that I can?" as a brief intervention to foster a more person-centered climate. Challenges that emerged are discussed from the perspectives of the researchers, the participants, and the setting; they relate to: timing and recruitment, the nature of palliative care illness, attitudes to research, and the research environment. Awareness of such issues can prompt researchers to devise appropriate strategies and approaches that may inform and assist the rigor and conduct of future research.

The dignified approach to care: a pilot study using the patient dignity question as an intervention to enhance dignity and person-centred care for people with palliative care needs in the acute hospital setting.

BACKGROUND: Providing person-centred, dignity-conserving care for hospitalised patients is central to many healthcare policies and essential to the provision of effective palliative care. The Patient Dignity Question (PDQ) "What do I need to know about you as a person to take the best care of you that I can?" was designed from empirical research on patients' perceptions of their dignity at end of life to help healthcare professionals (HCPs) understand the patient as a person. METHODS: This mixed method pilot study was designed to inform a larger multisite study in the future. It tests the hypothesis that the PDQ intervention could be used to enhance a more person-centred climate for people with palliative care needs in the acute hospital setting, and provide evidence regarding its acceptability. Outcome measures pre and post intervention Person-centred Climate Questionnaire--patient version (PCQ-P), and the Consultation and Relational Empathy (CARE) measure; PDQ feedback questionnaires were used for all participants post intervention, in addition to qualitative interviews. RESULTS: 30 patients, 17 HCPs, and 4 family members participated. Results showed a positive correlation between higher PCQ-P scores and higher CARE scores, indicating that the PDQ can make improvements to a person-centred environment and levels of empathy perceived by patients. Individual results from the PCQ-P and the CARE indicated overall improvements in the majority of fields. The PDQ supported disclosure of information previously unknown to HCPs, has implications for improving person-centred care. Positive results from PDQ feedback questionnaires were received from all participants. Qualitative findings indicated patients' appreciation of staff (Attributes and attitudes), that patients wanted staff to have awareness of them (Know me as a person), take the time to talk, and work flexibly, to allow for patient individuality (Time and place). CONCLUSION: The PDQ has potential to improve patients' perceptions of care, and HCP attitudes. Furthermore, it was well received by participants. The PDQ could be incorporated into clinical practice for the care of palliative care patients in the acute setting to the benefit of personalized and dignified care. Further research using the PDQ across wider geographical areas, and more diverse settings, would be beneficial.

Dignity and patient-centred care for people with palliative care needs in the acute hospital setting: A systematic review.

BACKGROUND: A core concept behind patient-centred approaches is the need to treat people with, and preserve, dignity in care settings. People receiving palliative care are one group who may have particularly sensitive needs in terms of their condition, symptoms and life expectancy. Dignity is more likely to be violated in hospital settings. Given the high percentage of people with palliative care needs who are admitted to hospital during their last year of life, the provision of dignity enhancing and preserving care in that setting is of vital importance. AIM: To examine international evidence relating to dignity and person-centred care for people with palliative care needs in the acute hospital setting. DESIGN: A systematic literature review was conducted, incorporating data extraction, analysis and quality appraisal of included papers. DATA SOURCES: MEDLINE, CINAHL, PsycINFO, ASSIA, EMBASE, Cochrane Database and Web of Science. Inclusion dates: 1 January 2000-1 April 2014. ELIGIBILITY CRITERIA: Adult palliative care, acute care setting, dignity or person-centred care. RESULTS: In all, 33 papers met the inclusion criteria for the review. Papers highlighted the many and varied potential threats to dignity for people with palliative care needs in acute settings, including symptom control and existential distress, approaches and models in care provision and healthcare settings and design. CONCLUSION: Acute hospital staff require adequate training, including symptom control, and the correct environment in which to deliver dignified and person-centred end-of-life care. Specific models/approaches to care can be beneficial, if adequate training regarding implementation is given. The needs of family members also require consideration, particularly following bereavement.

The person behind the patient: a feasibility study using the Patient Dignity Question for patients with palliative care needs in hospital.

OBJECTIVE: The purpose of this study was to assess the feasibility and acceptability of the Patient Dignity Question (PDQ) 'what do I need to know about you as a person to take the best care of you that I can?', as a person-centred intervention for patients with palliative needs in the acute hospital setting in Scotland, UK. METHOD: To test the feasibility of the research design, a purposive sample of nine patients and five health-care professionals (HCPs) were recruited from acute wards in the east of Scotland. Responses to the PDQ were assessed using a PDQ feedback questionnaire to gauge participant reaction to its use. A person-centred climate questionnaire (PCQ-P) was used to assess responses to the environment in relation to the person-centred approach. RESULTS: The results from responses to the PDQ feedback questionnaire indicate that it is feasible to carry out this type of study for people with palliative care needs in the acute care setting, and that participants found the PDQ acceptable. The PCQ-P was effective in determining the person-centred nature of the hospital climate. However, it was not possible to determine if the PDQ had a direct influence on this, without pre- and post-intervention data. CONCLUSIONS: The PDQ was feasible and acceptable for this group of participants as a means by which HCPs may enhance person-centred care for people with palliative needs in an acute hospital. Testing the implementation of the PDQ in a before-and-after study would be beneficial.

Methadone and oedema in the palliative care setting: a case report and review of the literature.

INTRODUCTION: Methadone is a synthetic opioid which is being used with increased frequency in the palliative care setting for management of complex pain. There have been cases published reporting the development of oedema with methadone maintenance therapy but no cases on the association with methadone and peripheral oedema in the palliative care setting. As yet, the underlying mechanisms are unclear. CASE PRESENTATION: This case report describes a gentleman with ependymoma and difficult-to-control lower back pain and scrotal pain. This pain had failed to respond to other strong opioids. He was prescribed methadone and then subsequently developed bilateral peripheral oedema. CASE MANAGEMENT: Peripheral oedema resolved following cessation of methadone. CONCLUSIONS: This highlights an important potential adverse effect of methadone in a society of increased methadone prescription for pain control. The published literature to date is reviewed and possible underlying mechanisms explored.

Integrating palliative care in lung cancer: an early feasibility study.

AIM: The aim of this preliminary study was to evaluate the feasibility of conducting an effectiveness trial of early access to palliative care services for people with lung cancer through use of an integrated outpatient model. METHODS: Newly diagnosed patients with lung cancer receiving palliative-intent treatment or best supportive care treatment were recruited over a 5-month period from one out-patient clinic in Scotland. Patients were offered a clinical review appointment with a palliative medicine consultant at two time points: baseline and 12 weeks later. Prior to each appointment patients completed three outcome measures addressing symptom severity, wellbeing, and health-care needs. One-to-one interviews were also conducted to explore patients' experiences of being involved in the study. RESULTS: Three patients participated in the study. The main reasons for low recruitment were patients' deteriorating condition and unwillingness to undertake extra hospital visits. However, qualitative data indicated that the participants found this extra layer of supportive care useful in identifying and managing their needs, as well as enabling future planning. CONCLUSION: Further testing is needed to ascertain the feasibility of conducting a trial of integrating early access to palliative care services into routine practice for people with lung cancer.

Outpatient continuous interscalene brachial plexus block in cancer-related pain.

This case outlines the use of a continuous interscalene brachial plexus block to treat cancer-related pain. Using an elastomeric device, the patient's previously intractable pain was controlled and he was able to return home. Furthermore, the patient developed a pragmatic and effective method of balancing loss of power and sensation against pain control using the flow restrictor. This case illustrates the potential of an integrated approach to cancer pain management to obtain rapid pain relief in the acute hospital setting.