BACKGROUND: Interventions delivered in palliative care are complex and their evaluation through qualitative and quantitative research can lead to contrasting results. In a systematic review of trials, the effectiveness results of complementary therapies in palliative care were inconclusive; however, our qualitative synthesis showed participants perceived them to be beneficial.
AIM: Use a novel methodology to synthesise evidence from qualitative and quantitative systematic reviews on complementary therapy in palliative care to explore the following: (1) If interventions delivered in trials reflect how participants in qualitative studies report they are delivered in real-life settings and (2) whether quality of life measures used in trials capture perceived benefits that are reported in qualitative studies.
METHODS: Two matrix tables were formulated. In one, key components in delivery of the complementary therapy from the qualitative synthesis which are as follows: (1) relationship with therapist, (2) comfortable environment, (3) choices (e.g. area of massage) and (4) frequent sessions, were plotted against intervention description, to explore matches and mismatches. In the other, items included in quality of life scales were compared with perceived benefits of complementary therapy.
RESULTS: None of the trials included all four key delivery components. The five quality of life scales used in the trials failed to capture the range of perceived benefits from the complementary therapies and many included inappropriate or redundant items.
CONCLUSIONS: By integrating qualitative and quantitative review data, we determined the reasons trials may be inconclusive. This methodological exemplar provides a framework for understanding complexity in outcomes across trials and a direction for future research.
OBJECTIVE: To identify and synthesise existing literature exploring the impact of relational and informational continuity of care on preferred place of death, hospital admissions and satisfaction for palliative care patients in qualitative, quantitative and mixed methods literature.
DESIGN: A mixed methods rapid review.
METHODS: PUBMED, PsychINFO, CINAHL were searched from June 2008 to June 2018 in order to identify original peer reviewed, primary qualitative, quantitative or mixed methods research exploring the impact of continuity of care for people receiving palliative care. Synthesis methods as outlined by the Cochrane Qualitative and Implementation Methods Group were applied to qualitative studies while meta-analyses for quantitative data were planned.
OUTCOMES: The impact of interventions designed to promote continuity of care for people receiving palliative care on the following outcomes was explored: achieving preferred place of death, satisfaction with care and avoidable hospital admissions.
RESULTS: 18 eligible papers were identified (11 qualitative, 6 quantitative and 1 mixed methods papers). In all, 1951 patients and 190 family caregivers were recruited across included studies. Meta-analyses were not possible due to heterogeneity in outcome measures and tools used. Two studies described positive impact on facilitating preferred place of death. Four described a reduction in avoidable hospital admissions. No negative impacts of interventions designed to promote continuity were reported. Patient satisfaction was not assessed in quantitative studies. Participants described a significant impact on their experiences as a result of the lack of informational and relational continuity.
CONCLUSIONS: This rapid review highlights the impact that continuity of care can have on the experiences of patients receiving palliative care. The evidence for the impact of continuity on place of death and hospital admissions is limited. Methods for enhancing, and recording continuity should be considered in the design and development of future healthcare interventions to support people receiving palliative care.
Objectives: Research suggests that clinicians are not very accurate at prognosticating in palliative care. The ‘horizon effect’ suggests that accuracy ought to be better when the survival of patients is shorter. The aim of this study was to determine the accuracy of specialist palliative care clinicians at identifying which patients are likely to die within 72 hours.
Design In a secondary data analysis of a prospective observational study, specialist palliative care doctors and nurses (in a hospice and a hospital palliative care team) provided survival predictions (yes/no/uncertain) about which patients would die within 72 hours.
Results: Survival predictions were obtained for 49 patients. A prediction from a nurse was obtained for 37/49 patients. A prediction from a doctor was obtained for 46/49 patients. In total, 23 (47%)/49 patients actually died within 72 hours of assessment. Nurses accurately predicted the outcome in 27 (73%)/37 cases. Doctors accurately predicted the outcome in 30 (65%)/46 cases. When comparing predictions given on the same patients (27 [55%]/49), nurses were slightly better at recognising imminent death than doctors (positive predictive value (the proportion of patients who died when the clinician predicted death)=79% vs 60%, respectively). The difference in c-statistics (nurses 0.82 vs doctors 0.63) was not significant (p=0.13).
Conclusion: Even when patients are in the terminal phase and close to death, clinicians are not very good at predicting how much longer they will survive. Further research is warranted to improve prognostication in this population.
BACKGROUND: Delirium is a syndrome characterised by an acute disturbance of attention and awareness which develops over a short time period and fluctuates in severity over the course of the day. It is commonly experienced during inpatient admission in the terminal phase of illness. It can cause symptoms such as agitation and hallucinations and is distressing for terminally ill people, their families and staff. Delirium may arise from any number of causes and treatment should aim to address these causes. When this is not possible, or treatment is unsuccessful, drug therapy to manage the symptoms may become necessary. This is the second update of the review first published in 2004.
OBJECTIVES: To evaluate the effectiveness and safety of drug therapies to manage delirium symptoms in terminally ill adults.
SEARCH METHODS: We searched CENTRAL, MEDLINE, Embase, CINAHL and PsycINFO from inception to July 2019, reference lists of retrieved papers, and online trial registries.
SELECTION CRITERIA: We included randomised controlled trials of drug therapies in any dose by any route, compared to another drug therapy, a non-pharmacological approach, placebo, standard care or wait-list control, for the management of delirium symptoms in terminally ill adults (18 years or older).
DATA COLLECTION AND ANALYSIS: We independently screened citations, extracted data and assessed risk of bias. Primary outcomes were delirium symptoms; agitation score; adverse events. Secondary outcomes were: use of rescue medication; cognitive status; survival. We applied the GRADE approach to assess the overall quality of the evidence for each outcome and we include eight 'Summary of findings' tables.
MAIN RESULTS: We included four studies (three new to this update), with 399 participants. Most participants had advanced cancer or advanced AIDS, and mild- to moderate-severity delirium. Meta-analysis was not possible because no two studies examined the same comparison. Each study was at high risk of bias for at least one criterion. Most evidence was low to very low quality, downgraded due to very serious study limitations, imprecision or because there were so few data. Most studies reported delirium symptoms; two reported agitation scores; three reported adverse events with data on extrapyramidal effects; and none reported serious adverse events. 1. Haloperidol versus placebo There may be little to no difference between placebo and haloperidol in delirium symptoms within 24 hours (mean difference (MD) 0.34, 95% confidence interval (CI) -0.07 to 0.75; 133 participants). Haloperidol may slightly worsen delirium symptoms compared with placebo at 48 hours (MD 0.49, 95% CI 0.10 to 0.88; 123 participants with mild- to moderate-severity delirium). Haloperidol may reduce agitation slightly compared with placebo between 24 and 48 hours (MD -0.14, 95% -0.28 to -0.00; 123 participants with mild- to moderate-severity delirium). Haloperidol probably increases extrapyramidal adverse effects compared with placebo (MD 0.79, 95% CI 0.17 to 1.41; 123 participants with mild- to moderate-severity delirium). 2. Haloperidol versus risperidone There may be little to no difference in delirium symptoms with haloperidol compared with risperidone within 24 hours (MD -0.42, 95% CI -0.90 to 0.06; 126 participants) or 48 hours (MD -0.36, 95% CI -0.92 to 0.20; 106 participants with mild- to moderate-severity delirium). Agitation scores and adverse events were not reported for this comparison. 3. Haloperidol versus olanzapine We are uncertain whether haloperidol reduces delirium symptoms compared with olanzapine within 24 hours (MD 2.36, 95% CI -0.75 to 5.47; 28 participants) or 48 hours (MD 1.90, 95% CI -1.50 to 5.30, 24 participants). Agitation scores and adverse events were not reported for this comparison. 4. Risperidone versus placebo Risperidone may slightly worsen delirium symptoms compared with placebo within 24 hours (MD 0.76, 95% CI 0.30 to 1.22; 129 participants); and at 48 hours (MD 0.85, 95% CI 0.32 to 1.38; 111 participants with mild- to moderate-severity delirium). There may be little to no difference in agitation with risperidone compared with placebo between 24 and 48 hours (MD -0.05, 95% CI -0.19 to 0.09; 111 participants with mild- to moderate-severity delirium). Risperidone may increase extrapyramidal adverse effects compared with placebo (MD 0.73 95% CI 0.09 to 1.37; 111 participants with mild- to moderate-severity delirium). 5. Lorazepam plus haloperidol versus placebo plus haloperidol We are uncertain whether lorazepam plus haloperidol compared with placebo plus haloperidol improves delirium symptoms within 24 hours (MD 2.10, 95% CI -1.00 to 5.20; 50 participants with moderate to severe delirium), reduces agitation within 24 hours (MD 1.90, 95% CI 0.90 to 2.80; 52 participants), or increases adverse events (RR 0.70, 95% CI -0.19 to 2.63; 31 participants with moderate to severe delirium). 6. Haloperidol versus chlorpromazine We are uncertain whether haloperidol reduces delirium symptoms compared with chlorpromazine at 48 hours (MD 0.37, 95% CI -4.58 to 5.32; 24 participants). Agitation scores were not reported. We are uncertain whether haloperidol increases adverse events compared with chlorpromazine (MD 0.46, 95% CI -4.22 to 5.14; 24 participants). 7. Haloperidol versus lorazepam We are uncertain whether haloperidol reduces delirium symptoms compared with lorazepam at 48 hours (MD -4.88, 95% CI -9.70 to 0.06; 17 participants). Agitation scores were not reported. We are uncertain whether haloperidol increases adverse events compared with lorazepam (MD -6.66, 95% CI -14.85 to 1.53; 17 participants). 8. Lorazepam versus chlorpromazine We are uncertain whether lorazepam reduces delirium symptoms compared with chlorpromazine at 48 hours (MD 5.25, 95% CI 0.38 to 10.12; 19 participants), or increases adverse events (MD 7.12, 95% CI 1.08 to 15.32; 18 participants). Agitation scores were not reported.
SECONDARY OUTCOMES: use of rescue medication, cognitive impairment, survival There were insufficient data to draw conclusions or assess GRADE.
AUTHORS' CONCLUSIONS: We found no high-quality evidence to support or refute the use of drug therapy for delirium symptoms in terminally ill adults. We found low-quality evidence that risperidone or haloperidol may slightly worsen delirium symptoms of mild to moderate severity for terminally ill people compared with placebo. We found moderate- to low-quality evidence that haloperidol and risperidone may slightly increase extrapyramidal adverse events for people with mild- to moderate-severity delirium. Given the small number of studies and participants on which current evidence is based, further research is essential.
OPINION STATEMENT: Patients with advanced cancer and their families commonly seek information about prognosis to aid decision-making in medical (e.g. surrounding treatment), psychological (e.g. saying goodbye), and social (e.g. getting affairs in order) domains. Oncologists therefore have a responsibility to identify and address these requests by formulating and sensitively communicating information about prognosis. Current evidence suggests that clinician predictions are correlated with actual survival but tend to be overestimations. In an attempt to cultivate prognostic skills, it is recommended that clinicians practice formulating and recording subjective estimates of prognosis in advanced cancer patient's medical notes. When possible, a multi-professional prognostic estimate should be sought as these may be more accurate than individual predictions alone. Clinicians may consider auditing the accuracy of their predictions periodically and using feedback from this process to improve their prognostic skills.Clinicians may also consider using validated prognostic tools to complement their clinical judgements. However, there is currently only limited evidence about the comparative accuracy of different prognostic tools or the extent to which these measures are superior to clinical judgement. Oncologists and palliative care physicians should ensure that they receive adequate training in advanced communication skills, which builds upon their pre-existing skills, to sensitively deliver information on prognosis. In particular, clinicians should acknowledge their own prognostic uncertainty and should emphasise the supportive care that can continue to be provided after stopping cancer-directed therapies.
OBJECTIVES: (1) To develop an understanding of how social capital may be conceptualised within the context of end-of-life care and how it can influence outcomes for people with dementia and their families with specific reference to the context and mechanisms that explain observed outcomes. (2) To produce guidance for healthcare systems and researchers to better structure and design a public health approach to end-of-life care for people with dementia.
DESIGN: A realist review.
DATA SOURCES: MEDLINE, EMBASE, CINAHL and grey literature.
ANALYSIS: We conceptualised social capital as a complex intervention and, in order to understand how change is generated, used realist evaluation methods to create different configurations of context, mechanism and outcomes. We conducted an iterative search focusing on social capital, social networks and end-of-life care in dementia. All study designs and outcomes were screened and analysed to elicit explanations for a range of outcomes identified. Explanations were consolidated into an overarching programme theory that drew on substantive theory from the social sciences and a public health approach to palliative care.
RESULTS: We identified 118 articles from 16 countries ranging from 1992 to 2018. A total of 40 context-mechanism-outcome configurations help explain how social capital may influence end-of-life care for people with dementia. Such influence was identified within five key areas. These included: (1) socially orientating a person with dementia following diagnosis; (2) transitions in the physical environment of care; (3) how the caregiving experience is viewed by those directly involved with it; (4) transition of a person with dementia into the fourth age; (5) the decision making processes underpinning such processes.
CONCLUSION: This review contributes to the dispassionate understanding of how complex systems such as community and social capital might be viewed as a tool to improve end-of-life care for people with dementia.
Objectives: Impending death is poorly recognised. Many undergraduate healthcare professionals will not have experience of meeting or caring for someone who is dying. As death can occur in any setting, at any time, it is vital that all healthcare students, regardless of the setting they go on to work in, have end-of-life care (EOLC) training. The aim was to determine current palliative care training at the undergraduate level, in multiple professions, in recognising and communicating dying.
Methods: Current UK undergraduate courses in medicine, adult nursing, occupational therapy, social work and physiotherapy were included. All courses received an email asking what training is currently offered in the recognition and communication of dying, and what time was dedicated to this.
Results: A total of 73/198 (37%) courses responded to the request for information. 18/20 medical courses provided training in recognising when patients were dying (median 2 hours), and 17/20 provided training in the communication of dying (median 3 hours). 80% (43/54) of nursing and allied health professional courses provided some training in EOLC. Many of the course organisers expressed frustration at the lack of resources, funding and time to include more training. Those courses with more palliative care provision often had a ‘champion’ to advocate for it.
Conclusions: Training in EOLC was inconsistent across courses and professions. Further research is needed to understand how to remove the barriers identified and to improve the consistency of current training.
Background: Recognising dying is a key clinical skill for doctors, yet there is little training.
Aim: To assess the effectiveness of an online training resource designed to enhance medical students’ ability to recognise dying.
Design: online multicentre double-blind randomised controlled trial (NCT03360812). The training resource for the intervention group was developed from a group of expert palliative care doctors’ weightings of various signs/symptoms to recognise dying. The control group received no training.
Setting/participants: Participants were senior UK medical students. They reviewed 92 patient summaries and provided a probability of death within 72 hours (0% certain survival – 100% certain death) pre, post, and 2 weeks after the training. Primary outcome: (1) Mean Absolute Difference (MAD) score between participants’ and the experts’ scores, immediately post intervention. Secondary outcomes: (2) weight attributed to each factor, (3) learning effect and (4) level of expertise (Cochran–Weiss–Shanteau (CWS)).
Results: Out of 168 participants, 135 completed the trial (80%); 66 received the intervention (49%). After using the training resource, the intervention group had better agreement with the experts in their survival estimates (dMAD = -3.43, 95% CI -0.11 to -0.34, p = <0.001) and weighting of clinical factors. There was no learning effect of the MAD scores at the 2-week time point (dMAD = 1.50, 95% CI -0.87 to 3.86, p = 0.21). At the 2-week time point, the intervention group was statistically more expert in their decision-making versus controls (intervention CWS = 146.04 (SD 140.21), control CWS = 110.75 (SD 104.05); p = 0.01).
Conclusion: The online training resource proved effective in altering the decision-making of medical students to agree more with expert decision-making.
BACKGROUND: Aromatherapy, massage and reflexology are widely used in palliative care. Despite this, there are questions about their suitability for inclusion in clinical guidelines. The need to understand their benefits is a public priority, especially in light of funding pressures.
AIM: To synthesise current evidence on the effectiveness of aromatherapy, massage and reflexology in people with palliative care needs.
DESIGN: A systematic review of randomised controlled trials (PROSPERO CRD42017081409) was undertaken following international standards including Cochrane guidelines. The quality of trials and their pooled evidence were appraised. Primary outcomes on effect were anxiety, pain and quality-of-life.
DATA SOURCES: Eight citation databases and three trial registries were searched to June 2018.
RESULTS: Twenty-two trials, involving 1956 participants were identified. Compared with a control, four evaluated aromatherapy, eight massage and six reflexology. A further four evaluated massage compared with aromatherapy. Trials were at an unclear risk of bias. Many had small samples. Heterogeneity prevented meta-analysis. In comparison with usual care, another therapy or an active control, evidence on the effectiveness of massage and aromatherapy in reducing anxiety, pain and improving quality-of-life was inconclusive. There was some evidence (low quality) that compared to an active control, reflexology reduced pain.
CONCLUSIONS: This review identified a relatively large number of trials, but with poor and heterogeneous evidence. New clinical recommendations cannot be made based on current evidence. To help provide more definitive trial findings, it may be useful first to understand more about the best way to measure the effectiveness of these therapies in palliative care.
INTRODUCTION: Emotional disclosure (ED) is a term used to describe the therapeutic expression of emotion. ED underlies a variety of therapies aimed at improving well-being for various populations, including people with palliative-stage disease and their family carers. Systematic reviews of ED-based psychotherapy have largely focused on expressive writing as a way of generating ED. However, heterogeneity in intervention format and outcome measures has made it difficult to analyse efficacy. There is also debate about the mechanisms proposed to explain the potential effects of ED.We present a scoping review protocol to develop a taxonomy of ED-based interventions to identify and categorise the spectrum of interventions that could be classified under the umbrella term of 'emotional disclosure' in the palliative care setting. By mapping these to associated treatment objectives, outcome measures and explanatory frameworks, the review will inform future efforts to design and evaluate ED-based therapies in this population.
METHODS AND ANALYSIS: The review will be guided by Arksey and O'Malley's five-stage scoping review framework and Levac's extension. The following electronic databases will be searched from database inception: CENTRAL, the Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycINFO, Scopus, Web of Science and MEDLINE. We will include peer-reviewed studies and reviews. We will also check grey literature, including clinical trial registers, conference proceedings and reference lists, as well as contacting researchers. Articles will be screened by at least two independent reviewers and data charted using an extraction form developed for this review. Results will be analysed thematically to create a taxonomy of interventions, outcome measures and theoretical frameworks.
ETHICS AND DISSEMINATION: This review does not require ethical approval as it is a secondary analysis of pre-existing, published data. The results will inform future research in the development of ED-based interventions and evaluation of their efficacy in the palliative care setting. We will disseminate findings through peer-reviewed journals.
Objectives The aims of this study were (1) to document the clinical condition of patients considered to be in the last 2 weeks of life and (2) to compare patients who did or did not survive for 72 hours.
Design A prospective observational study.
Setting Two sites in London, UK (a hospice and a hospital palliative care team).
Participants Any inpatient, over 18 years old, English speaking, who was identified by the palliative care team as at risk of dying within the next 2 weeks was eligible.
Outcome measures Prognostic signs and symptoms were documented at a one off assessment and patients were followed up 7 days later to determine whether or not they had died.
Results Fifty participants were recruited and 24/50 (48%) died within 72 hours of assessment. The most prevalent prognostic features observed were a decrease in oral food intake (60%) and a rapid decline of the participant’s global health status (56%). Participants who died within 72 hours had a lower level of consciousness and had more care needs than those who lived longer. A large portion of data was unavailable, particularly that relating to the psychological and spiritual well-being of the patient, due to the decreased consciousness of the patient.
Conclusions The prevalence of prognostic signs and symptoms in the final days of life has been documented between those predicted to die and those who did not. How doctors make decisions with missing information is an area for future research, in addition to understanding the best way to use the available information to make more accurate predictions.
An accurate prognosis about how long a terminally ill patient has left to live, when disclosed sensitively in open discussions, can facilitate patient-centred care and shared decision making. In addition, several guidelines, policies and funding streams rely, to some extent, on a clinician estimated prognosis. However, clinician predictions alone have been shown to be unreliable and over-optimistic. The factors underlying clinicians' prognostic decisions (particularly at the very end of life) are beginning to be elucidated. As an alternative to clinicians' subjective estimates, a number of prognostic algorithms and scores have been developed and validated, but only a few have consistently shown superiority to clinician predictions. Therefore, an element of uncertainty remains and this needs to be acknowledged when having conversations with patients and their families. Guidelines are available to advise clinicians about how to prepare for, participate in and record prognostic conversations.
BACKGROUND: Effectiveness evidence of complementary therapies in people with advanced disease is uncertain, and yet people are still keen to engage in complementary therapy. Insights into people's experiences of complementary therapy in palliative care, the perceived benefits, and how they want it delivered, can inform clinical guidelines and suggest ways to test therapies more appropriately in future evaluations.
AIMS: Explore in people with advanced disease (1) the experiences and perceptions of benefits and harms of aromatherapy, massage, and reflexology and (2) how they would like these therapies delivered.
DESIGN: A systematic review and thematic synthesis of qualitative studies. Database search terms were related to palliative care, aromatherapy, reflexology and massage. Citations and full texts were reviewed independently against predefined inclusion criteria. Studies were appraised for quality. This review is registered at PROSPERO (22/11/2017 CRD42017081409).
DATA SOURCES: MEDLINE, EMBASE, PsycINFO, AMED, CINAHL, KoreaMed and ProQuest with a bibliography search to June 2018.
RESULTS: Five qualitative studies in advanced cancer were identified. Three analytical themes were identified: (1) Experience during the therapy (enhanced well-being and escapism), (2) beyond the complementary therapy session (lasting benefits and overall evaluation), and (3) delivery of complementary therapy in palliative care (value of the therapist and delivery of the complementary therapy).
CONCLUSIONS: People with advanced cancer experience benefits from aromatherapy, reflexology and massage including enhanced well-being, respite, and escapism from their disease. Complementary therapy interventions should be developed in consultation with the target population to ensure they are delivered and evaluated, where feasible, as they wish.
OBJECTIVES: To determine the accuracy of predictions of dying at different cut-off thresholds and to acknowledge the extent of clinical uncertainty.
DESIGN: Secondary analysis of data from a prospective cohort study.
SETTING: An online prognostic test, accessible by eligible participants across the UK.
PARTICIPANTS: Eligible participants were members of the Association of Palliative Medicine. 99/166 completed the test (60%), resulting in 1980 estimates (99 participants × 20 summaries).
MAIN OUTCOME MEASURES: The probability of death occurring within 72 hours (0% certain survival-100% certain death) for 20 patient summaries. The estimates were analysed using five different thresholds: 50/50%, 40/60%, 30/70%, 20/80% and 10/90%, with percentage values between these extremes being regarded as 'indeterminate'. The positive predictive value (PPV), negative predictive value (NPV) and the number of indeterminate cases were calculated for each cut-off.
RESULTS: Using a <50% versus >50% threshold produced a PPV of 62%, an NPV of 74% and 5% indeterminate cases. When the threshold was changed to =10% vs =90%, the PPV and NPV increased to 75% and 88%, respectively, at the expense of an increase of indeterminate cases up to 62%.
CONCLUSION: When doctors assign a very high (=90%) or very low (=10%) probability of imminent death, their prognostic accuracy is improved; however, this increases the number of ‘indeterminate’ cases. This suggests that clinical predictions may continue to have a role for routine prognostication but that other approaches (such as the use of prognostic scores) may be required for those cases where doctors’ estimates are indeterminate.
BACKGROUND: The Surprise Question (SQ) "would I be surprised if this patient were to die in the next 12 months?" has been suggested to help clinicians, and especially General Practitioners (GPs), identify people who might benefit from palliative care. The prognostic accuracy of this approach is unclear and little is known about how GPs use this tool in practice. Are GPs consistent, individually and as a group? Are there international differences in the use of the tool? Does including the alternative Surprise Question ("Would I be surprised if the patient were still alive after 12 months?") alter the response? What is the impact on the treatment plan in response to the SQ? This study aims to address these questions.
METHODS: An online study will be completed by 600 (100 per country) registered GPs. They will be asked to review 20 hypothetical patient vignettes. For each vignette they will be asked to provide a response to the following four questions: (1) the SQ [Yes/No]; (2) the alternative SQ [Yes/No]; (3) the percentage probability of dying [0% no chance - 100% certain death]; and (4) the proposed treatment plan [multiple choice]. A "surprise threshold" for each participant will be calculated by comparing the responses to the SQ with the probability estimates of death. We will use linear regression to explore any differences in thresholds between countries and other clinician-related factors, such as years of experience. We will describe the actions taken by the clinicians and explore the differences between groups. We will also investigate the relationship between the alternative SQ and the other responses. Participants will receive a certificate of completion and the option to receive feedback on their performance.
DISCUSSION: This study explores the extent to which the SQ is consistently used at an individual, group, and national level. The findings of this study will help to understand the clinical value of using the SQ in routine practice.
BACKGROUND: Little research has explored the detail of practice when using sedative medications at the end of life. One work package of the I-CAN-CARE research programme investigates this in UK palliative care.
AIMS: To investigate current practices when using sedative medication at the end of life in London, UK, by (1) qualitatively exploring the understandings of palliative care clinicians, (2) examining documented sedative use in patient records and (3) comparing findings from both investigations.
DESIGN: We conducted focus groups with experienced palliative care physicians and nurses, and simultaneously reviewed deceased patient records.
SETTING/PARTICIPANTS: In total, 10 physicians and 17 senior nurses in London hospice or hospital/community palliative care took part in eight focus groups. Simultaneously, 50 patient records for people who received continuous sedation at end of life in the hospice and hospital were retrieved and reviewed.
RESULTS: Focus group participants all said that they used sedative medication chiefly for managing agitation or distress; selecting drugs and dosages as appropriate for patients’ individual needs; and aiming to use the lowest possible dosages for patients to be ‘comfortable’, ‘calm’ or ‘relaxed’. None used structured observational tools to assess sedative effects, strongly preferring clinical observation and judgement. The patient records’ review corroborated these qualitative findings, with the median continuous dose of midazolam administered being 10 mg/24 h (range: 0.4–69.5 mg/24 h).
CONCLUSION: Clinical practice in these London settings broadly aligns with the European Association for Palliative Care framework for using sedation at the end of life, but lacks any objective monitoring of depth of sedation. Our follow-on study explores the utility and feasibility of objectively monitoring sedation in practice.
OBJECTIVES: To identify a group of palliative care doctors who perform well on a prognostic test and to understand how they make their survival predictions.
DESIGN: Prospective observational study and two cross-sectional online studies.
SETTING: Phase I: an online prognostic test, developed from a prospective observational study of patients referred to palliative care. Phase II: an online judgement task consisting of 50 hypothetical vignettes.
PARTICIPANTS: All members of the Association of Palliative Medicine (APM) were eligible (n=~1100). 99 doctors completed the prognostic test and were included in the phase I analysis. The top 20% were invited to participate in phase II; 14/19 doctors completed the judgement task and were included in the phase II analysis.
MEASURES: Phase I: participants were asked to give a probability of death within 72 hours (0%–100%) for all 20 cases. Accuracy on the prognostic test was measured with the Brier score which was used to identify the ‘expert’ group (scale range: 0 (expert)–1 (non-expert)). Phase II: participants gave a probability of death within 72 hours (0%–100%). A mixed model regression analysis was completed using the percentage estimate as the outcome and the patient information included in the vignettes as the predictors.
RESULTS: The mean Brier score of all participants was 0.237 (95% CI 0.235 to 0.239). The mean Brier score of the ‘experts’ was 0.184 (95% CI 0.176 to 0.192). Six of the seven prognostic variables included in the hypothetical vignettes were significantly associated with clinician predictions of death. The Palliative Performance Score was identified as being the most influential in the doctors’ prognostic decision making (ß=0.48, p<0.001).
CONCLUSIONS: This study identified six clinical signs and symptoms which influenced the judgement policies of palliative care doctors. These results may be used to teach novice doctors how to improve their prognostic skills.
Full integration of oncology and palliative care relies on the specific knowledge and skills of two modes of care: the tumour-directed approach, the main focus of which is on treating the disease; and the host-directed approach, which focuses on the patient with the disease. This Commission addresses how to combine these two paradigms to achieve the best outcome of patient care. Randomised clinical trials on integration of oncology and palliative care point to health gains: improved survival and symptom control, less anxiety and depression, reduced use of futile chemotherapy at the end of life, improved family satisfaction and quality of life, and improved use of health-care resources. Early delivery of patient-directed care by specialist palliative care teams alongside tumour-directed treatment promotes patient-centred care. Systematic assessment and use of patient-reported outcomes and active patient involvement in the decisions about cancer care result in better symptom control, improved physical and mental health, and better use of health-care resources. The absence of international agreements on the content and standards of the organisation, education, and research of palliative care in oncology are major barriers to successful integration. Other barriers include the common misconception that palliative care is end-of-life care only, stigmatisation of death and dying, and insufficient infrastructure and funding. The absence of established priorities might also hinder integration more widely. This Commission proposes the use of standardised care pathways and multidisciplinary teams to promote integration of oncology and palliative care, and calls for changes at the system level to coordinate the activities of professionals, and for the development and implementation of new and improved education programmes, with the overall goal of improving patient care. Integration raises new research questions, all of which contribute to improved clinical care. When and how should palliative care be delivered? What is the optimal model for integrated care? What is the biological and clinical effect of living with advanced cancer for years after diagnosis? Successful integration must challenge the dualistic perspective of either the tumour or the host, and instead focus on a merged approach that places the patient's perspective at the centre. To succeed, integration must be anchored by management and policy makers at all levels of health care, followed by adequate resource allocation, a willingness to prioritise goals and needs, and sustained enthusiasm to help generate support for better integration. This integrated model must be reflected in international and national cancer plans, and be followed by developments of new care models, education and research programmes, all of which should be adapted to the specific cultural contexts within which they are situated. Patient-centred care should be an integrated part of oncology care independent of patient prognosis and treatment intention. To achieve this goal it must be based on changes in professional cultures and priorities in health care.
Background: In the UK, many people experiencing homelessness whose health is deteriorating remain in homeless hostels due to few suitable alternative places of care. Hostel staff struggle to support residents with deteriorating health and palliative care services are rarely involved. There is recognition of the need for multiagency working to support this group.
Objectives: To pilot and evaluate the impact of a two-day training course for hostel staff around supporting clients with palliative care needs, and increasing multiagency working.
Design: Mixed methods evaluation using pre-and-post training data collection.
Settings and Participants: Frontline staff from two London homeless hostels.
Methods: Staff from two hostels attended a two day training course. Self-perceived confidence in supporting residents with deteriorating health, knowledge of palliative care, openness to discussing deteriorating health and work related stress were assessed at baseline and immediately after training using a novel questionnaire. Qualitative data was collected via focus groups immediately after and three months post-training.
Results: Twenty four participants attended at least one day of training, 21 (87%) completed the course. Training was reported to be useful and relevant. Modest improvements in self-perceived work related stress, knowledge, confidence and openness were observed following training. At three months, qualitative data indicated the beginnings of a shift in how palliative care was conceptualised and an increase in knowledge and confidence around supporting residents. Anxiety regarding the role of the hostel in palliative care, the recovery focused ethos of homelessness services and fragmented systems and services presented challenges to establishing changes.
Conclusions: Training can be useful for improving knowledge, confidence, openness and work related stress. Recommendations for implementing changes in how people experiencing homelessness are supported include embedding training into routine practice, promoting multidisciplinary working, incorporating flexibility within the recovery focused approach of services and recognising the need for emotional support for staff.
Studies indicate research ethics committee (REC) approval and clinician gatekeeping are two key barriers in recruiting children and young people (CYP) with life-limiting conditions (LLCs) and life-threatening illnesses (LTIs) and their families to research.
OBJECTIVES: To explore the reported experiences, difficulties and proposed solutions of chief investigators (CIs) recruiting CYP with LLCs/LTIs and families in the UK.
METHODS: 61 CIs conducting studies with CYP with LLCs/LTIs and their families, identified from the UK National Institute of Health Research portfolio, completed an anonymous, web-based questionnaire, including both closed and open-ended questions. Descriptive statistics and inductive and deductive coding were used to analyse responses.
RESULTS: UK CIs cited limitations on funding, governance procedures including Research and Development, Site-Specific and REC approval processes, and clinician gatekeeping as challenges to research. CIs offered some solutions to overcome identified barriers such as working with CYP and their families to ensure their needs are adequately considered in study design and communicated to ethics committees; and designing studies with broad inclusion criteria and developing effective relationships with clinicians in order to overcome clinician gatekeeping.
CONCLUSIONS: Many of the challenges and solutions reported by UK CIs have applicability beyond the UK setting. The involvement of clinicians, patients and their families at the inception of and throughout paediatric palliative care research studies is essential. Other important strategies include having clinician research champions and increasing the visibility of research. Further research on the perspectives of all stakeholders, leading to mutually agreed guidance, is required if care and treatment are to improve.