BACKGROUND: Family conferences (FCs) in the intensive care unit play an important role in reducing the psychological burden of patients' families at the end of life. However, no studies have clarified the specific roles and contributions of nurses related to FCs for terminally ill patients in critical care and their families.
AIMS AND OBJECTIVES: To clarify nurses' contribution to FCs for terminally ill patients in critical care and their families and examine the priority of each item.
DESIGN: A modified Delphi method was used.
METHODS: This study consisted of two phases. In phase 1, an initial list was developed based on a literature review, individual interviews, and a focus group interview. Phase 2 involved two rounds of the Delphi survey. Practitioners (N = 55) from hospitals across Japan were recruited to the Expert Panel for phase 2. They were asked to rate each nurse's contribution in terms of its importance using a 9-point Likert scale (1 being "not important at all" to 9 being "very important"). Fifty participants responded to round 1 of the survey, and 46 participants completed round 2. If at least 80% of the panellists chose an importance level of 7 or higher, the item was considered "important".
RESULTS: The 65 items of the potential list were classified into three domains: preparation (16 items), discussion and facilitating meaning during a FC (32 items), and follow up after a FC (17 items). The expert panel determined that, of 65 items, 49 items on the proposed list of nurses' contribution were considered important.
CONCLUSIONS: This study clarified nurses' contribution to FCs, with consensus on their importance by expert nurses.
RELEVANCE TO CLINICAL PRACTICE: This study could be useful for improving and ensuring the quality of nurses' contribution to FCs and promoting collaboration between nurses and other medical professionals.
Background: Interviews are a common method of data collection in palliative care research because they facilitate the gathering of rich, experiential data that are important for theory and practice. What is less clear is the extent to which those interviewed are representative of the larger group.
Objective: The aim of this study was to determine if family caregivers who volunteer to be interviewed were similar or different to those who do not.
Design: This study used data from the Caregiving and Bereavement study, a prospective, longitudinal mixed-methods study of family caregivers' general health, quality of life, and grief.
Setting/Subjects: The 16 caregivers who volunteered to be interviewed were compared to the 20 who did not.
Measurements: Comparisons were made in terms of the caregivers' demographic characteristics as well as measures of their quality of life, general health, general grief, and caregiver prolonged grief (i.e., before death).
Results: Compared to caregivers who did not volunteer for an interview, those who volunteered were significantly older and reported less caregiver prolonged grief. Logistic regression showed that for each 1-unit increase in the caregiver prolonged grief score, individuals were 13% less likely to agree to an interview.
Conclusions: Research findings based upon family caregivers who volunteer for research interviews might not provide a full picture of their experiences and needs. Researchers are encouraged to consider strategies that sample broadly and promote the participation of the full range of family caregivers in research to address the neglected areas of pre- and postdeath bereavement care.
La recherche documentaire est souvent jugée complexe et chronophage par les professionnels de santé. Cette démarche intellectuelle nécessite méthode et savoir-faire que nous nous proposons de transmettre dans cet article. Ainsi, nous montrerons pourquoi la recherche documentaire est devenue une stratégie indispensable pour trouver les documents recherchés. Nous décrirons ensuite les étapes d’une recherche documentaire et nous donnerons quelques clés pour effectuer ce travail.
OBJECTIVE: To show how a simple Bayesian analysis method can be used to improve the evidence base in patient populations where recruitment and retention are challenging.
METHODS: A Bayesian conjugate analysis method was applied to binary data from the Thermal testing in Bone Pain (TiBoP) study: a prospective diagnostic accuracy/predictive study in patients with cancer-induced bone pain (CIBP). This study aimed to evaluate the clinical utility of a simple bedside tool to identify who was most likely to benefit from palliative radiotherapy (XRT) for CIBP.
RESULTS: Recruitment and retention of patients were challenging due to the frail population, with only 27 patients available for the primary analysis. The Bayesian method allowed us to make use of prior work done in this area and combine it with the TiBoP data to maximise the informativeness of the results. Positive and negative predictive values were estimated with greater precision, and interpretation of results was facilitated by use of direct probability statements. In particular, there was only 7% probability that the true positive predictive value was above 80%.
CONCLUSIONS: Several advantages of using Bayesian analysis are illustrated in this article. The Bayesian method allowed us to gain greater confidence in our interpretation of the results despite the small sample size by allowing us to incorporate data from a previous similar study. We suggest that this method is likely to be useful for the analysis of small diagnostic or predictive studies when prior information is available.
BACKGROUND: Evaluations of complex interventions compared to usual care provided in palliative care are increasing. Not describing usual care may affect the interpretation of an intervention's effectiveness, yet how it can be described remains unclear.
AIM: To demonstrate the feasibility of using multi-methods to describe usual care provided in randomised controlled trials (RCTs) of complex interventions, shown within a feasibility cluster RCT.
DESIGN: Multi-method approach comprising usual care questionnaires, baseline case note review and focus groups with ward staff completed at study end. Thematic analysis of qualitative data, descriptive statistics of quantitative data, followed by methodological triangulation to appraise approach in relation to study aim.
SETTING/PARTICIPANTS: Four general medical wards chosen from UK hospitals. Purposive sampling of healthcare professionals for usual care questionnaires, and focus groups. Review of 20 patients’ notes from each ward who died during admission or within 100 days of discharge.
RESULTS: Twenty-three usual care questionnaires at baseline, two focus groups comprising 20 healthcare professionals and 80 case note reviews. Triangulation of findings resulted in understanding the usual care provided to the targeted population in terms of context, structures, processes and outcomes for patients, families and healthcare professionals. Usual care was described, highlighting (1) similarities and embedded practices, (2) heterogeneity and (3) subtle changes in care during the trial within and across sites.
CONCLUSIONS: We provide a feasible approach to defining usual care that can be practically adopted in different settings. Understanding usual care enhances the reliability of tested complex interventions, and informs research and policy priorities.
New approaches are needed to assist residential aged care (RAC) staff increase their skills and confidence in identifying when residents are nearing the dying phase and managing symptoms. One new evidence-based approach to improve palliative and end-of-life care in RAC is outreach Specialist Palliative Care Needs Rounds (monthly triage and risk stratification meetings – hereafter Needs Rounds); as yet untried in rural settings which may face unique enablers or challenges. Needs Rounds were introduced into two RAC facilities in the rural Snowy Monaro region of New South Wales, Australia. This study explored staff and general practitioners’(GPs’) experiences and perceptions of palliative and end-of-life care in rural RAC, and staff confidence and capability in providing such care, prior to, and after the introduction of Needs Rounds. A mixed-methods, pre- and post-intervention approach was taken, utilizing a Likert-scale written questionnaire and face-to-face semi-structured interviews. Between March and November 2018, 61 questionnaires were completed by 48 RAC staff (33 pre-, 28 post-intervention); eight staff and three GPs were interviewed. Despite system and site-specific barriers, staff self-reported that Needs Rounds increased their capability in providing end-of-life care (p = 0.04; 95% CI 0.20–7.66), and improved staff: (1) awareness of end of life, reflective practice, and critical thinking; (2) end-of-life decision making and planning; and (3) pain management. Needs Rounds are acceptable and feasible in rural RAC. Palliative and end-of-life care for residents may be improved through education, collaboration, communication, and planning. Further studies should explore running Needs Rounds via telehealth and/or utilizing a multidisciplinary approach.
The potential association between serotonin syndrome and tapentadol is not well described in the literature. This study aimed to review the literature and identify methodological issues that could lead to inaccurately reported rates of serotonin syndrome associated with tapentadol use. A systematic review of English articles using MEDLINE, Cochrane Controlled Trials Register, and Scopus was performed. Additional studies were identified by cross-referencing article bibliographies. Original research that examined the safety of tapentadol in patients with nonconfounding indications were examined. In total, 22 studies met inclusion criteria. There were 13 randomized clinical trials, 7 open-label trials, and 2 observational studies. All studies either did not mention whether serotonergic medication use was prohibited or disallowed use. Frequently reported adverse events were nausea, diarrhea, constipation, fatigue, vomiting, and somnolence. No studies reported serotonin syndrome development. No included trials differentiated between the development of adverse events in patients taking serotonergic drugs and those who were not. This differentiation is necessary to evaluate the increased risk of adverse events in patients prescribed tapentadol concomitantly with other serotonergic medications. Therefore, the current tapentadol literature has important limitations that prevent the adequate characterization of the potential association between tapentadol and serotonin syndrome.
Nurse practitioners play an integral part of the face-to-face visit. The face-to-face visit requirement came into effect on January 11, 2011, for hospice patients entering their third or later benefit period. The face-to-face requirement was created because of concerns regarding high numbers of hospice patients with lengths of stay greater than 180 days, in addition to concerns the physician was not as active in the care of the hospice patient as required. Face-to-face visits can be completed by the hospice physician or nurse practitioner employed by the hospice agency. The face-to-face narrative includes a clear title, date, clinical findings demonstrating continued hospice eligibility and a signature of the individual completing the face-to-face visit. In addition, an attestation statement stating that the encounter was completed with the patient and the clinical findings were provided to the certifying physician is also a requirement of the narrative. Documenting clinical findings that demonstrate hospice eligibility can be challenging. Using the FACE-2-FACE method can help clarify the clinical findings necessary to demonstrate the patient’s continued hospice eligibility.
OBJECTIVE: To describe the strategies used by a collection of healthcare systems to apply different methods of identifying seriously ill patients for a targeted palliative care intervention to improve communication around goals and values.
METHODS: We present an implementation case series describing the experiences, challenges and best practices in applying patient selection strategies across multiple healthcare systems implementing the Serious Illness Care Program (SICP).
RESULTS: Five sites across the USA and England described their individual experiences implementing patient selection as part of the SICP. They employed a combination of clinician screens (such as the 'Surprise Question'), disease-specific criteria, existing registries or algorithms as a starting point. Notably, each describes adaptation and evolution of their patient selection methodology over time, with several sites moving towards using more advanced machine learning-based analytical approaches.
CONCLUSIONS: Involving clinical and programme staff to choose a simple initial method for patient identification is the ideal starting place for selecting patients for palliative care interventions. However, improving and refining methods over time is important and we need ongoing research into better patient selection methodologies that move beyond mortality prediction and instead focus on identifying seriously ill patients-those with poor quality of life, worsening functional status and medical care that is negatively impacting their families.
Background: Despite growing interest from policy makers, researchers and activists in the global development of palliative care, there is still little science to underpin it. This study presents the methods deployed in the creation of a 'world map' of palliative care development. Building on two previous iterations, with improved rigour and taking into account reviewers' feedback, the aim of this recalibrated version of the study is to determine the level of palliative care development in 198 United Nations recognised countries in 2017, whilst ensuring comparability with previous versions. We present methods of data collection and analysis.
Methods and analysis: Primary data on the level of palliative care development in 2017 was collected from in-country experts through an online questionnaire and, where required, supplemented by published documentary sources and grey literature. Data relating to the total population of each country as well as per capita opioid consumption were derived from independent sources. Data analysis was conducted according to a new scoring system and algorithm developed by the research team.
Ethics and dissemination: The study was approved by the University of Glasgow College of Social Sciences Research Ethics Committee. Findings of the study will be disseminated in peer-reviewed journals, as a contribution to the second edition of the Global Atlas of Palliative Care at the End-of-Life, and via social media, including the Glasgow End of Life Studies Group blog and the project website.
Limitations of the study: There are potential biases associated with self-reporting by key in-country experts. In some countries, the identified key expert failed to complete the questionnaire in whole or part and data limitations were potentially compounded by language restrictions, as questionnaires were available only in three European languages. The study relied in part on data from independent sources, the accuracy of these data could not be verified.
Objectives: To present and discuss the views of researchers at an academic palliative care research centre on research encounters with terminally ill patients in the home setting and to generate a list of recommendations for qualitative researchers working in palliative and end-of-life care.
Methods: Eight researchers took part in a consensus meeting to discuss their experiences of undertaking qualitative interviews. The researchers were of varying backgrounds and all reported having experience in interviewing terminally ill patients, and all but one had experience of interviewing patients in their home environment.
Results: The main areas discussed by researchers included: whether participation in end-of-life research unintentionally becomes a therapeutic experience or an ethical concern; power relationships between terminally ill patients and researchers; researcher reflexivity and reciprocity; researchers' training needs. Qualitative methods can complement the home environment; however, it can raise ethical and practical challenges, which can be more acute in the case of research undertaken with palliative and patients at the end-of-life.
Conclusions: The ethical and practical challenges researchers face in this context has the potential to place both participant and researcher at risk for their physical and psychological well-being. We present a set of recommendations for researchers to consider prior to embarking on qualitative research in this context and advocate researchers in this field carefully consider the issues presented on a study-by-study basis.
Findings indicate this workshop initiative is both feasible and transformative.
ABSTRACT: Background: Grief and loss are significant issues for health care providers, who may witness their patients' pain and suffering, experience feelings of grief as a result of caring for sick and dying people, and reexperience their own past losses. Unaddressed grief can lead to many issues for providers, their patients, and the health care system as a whole.
METHODS: Healing Loss: A Residential Workshop for Montefiore Associates is an experiential and educational program aimed at helping professional caregivers to identify and process grief and loss. Through retrospective analysis of program participation and feedback data, this study investigated the feasibility and effectiveness of offering an intensive bereavement support program to hospital employees in a large academic health system.
RESULTS: Between 2013 and 2017, Montefiore Health System held nine Healing Loss workshops, serving 198 employees from diverse professions. These participants described multiple benefits, including being able to grieve more effectively, accessing support, and learning new tools for healing and self-care. Participants described the workshop experience as unique, cathartic, and life changing.
CONCLUSIONS: The sustainability of the Healing Loss initiative during the four years of the study, together with strong feedback from participants, indicates that bereavement support for hospital employees is both feasible and beneficial.
BACKGROUND: A lack of public awareness of palliative care (PC) has been identified as one of the main barriers to appropriate PC access. Internet search query analysis is a novel methodology, which has been effectively used in surveillance of infectious diseases, and can be used to monitor public awareness of health-related topics.
OBJECTIVES: We aimed to demonstrate the utility of internet search query analysis to evaluate changes in public awareness of PC in the USA between 2005 and 2015.
METHODS: Google Trends provides a referenced score for the popularity of a search term, for defined regions over defined time periods. The popularity of the search term 'palliative care' was measured monthly between 1/1/2005 and 31/12/2015 in the USA and in the UK.
RESULTS: Results were analysed using independent t-tests and joinpoint analysis. The mean monthly popularity of the search term increased between 2008-2009 (p<0.001), 2011-2012 (p<0.001), 2013-2014 (p=0.004) and 2014-2015 (p=0.002) in the USA. Joinpoint analysis was used to evaluate the monthly percentage change (MPC) in the popularity of the search term. In the USA, the MPC increase was 0.6%/month (p<0.05); in the UK the MPC of 0.05% was non-significant.
DISCUSSION: Although internet search query surveillance is a novel methodology, it is freely accessible and has significant potential to monitor health-seeking behaviour among the public. PC is rapidly growing in the USA, and the rapidly increasing public awareness of PC as demonstrated in this study, in comparison with the UK, where PC is relatively well established is encouraging in increasingly ensuring appropriate PC access for all.
Informal family caregivers make a significant contribution to the U.S. health care system, and the need for caregivers will likely increase. Gaining deeper insights into the caregiver experience will provide essential knowledge needed to support the future caregiver workforce delivering care. Discourse analysis is a viable approach in analyzing textual caregiver data that focuses on the end-of-life caregiving experience. The purpose of this study was to conduct an in-depth discourse analytic examination of 13 hours of caregiver interview data, which reveal the multiplicity of shifting stances and perceptions of one caregiver in the midst of end-of-life care, specifically with regard to his perceptions of self (caregiver) and other (care recipient). By isolating a specific but limited set of reference terms used throughout the discourse, we gained systematic glimpses into the mind and perceptions of this single caregiver in relation to his role as caregiver for his terminally ill wife.
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.
BACKGROUND AND AIMS: The incidence and mortality from end-stage liver disease is increasing, with a minority eligible for liver transplantation. Ascites is the commonest complication of end-stage liver disease and large volume paracentesis (LVP) the accepted management strategy where refractory to medical treatment. In malignant ascites, permanent indwelling peritoneal catheters (PIPC) are an established palliative intervention. The aims are to describe available data using permanent indwelling peritoneal catheters in refractory ascites due to end-stage liver disease.
METHODS: Using systematic review methodology, databases were searched (MEDLINE, EMBASE, CINAHL [The Cumulative Index to Nursing and Allied Health Literature], Google Scholar and Cochrane Database of Systematic Reviews from inception-March 2018), for studies combining ascites and palliative care. Inclusion and exclusion criteria were applied to results.
RESULTS: Following initial and updated searches, 225 studies were identified for full text review, 18 were eligible for final analysis. The studies displayed heterogeneity in design, reported on different indwelling catheters and were overall of low quality. Only one pilot randomised controlled trial was identified, of PIPC versus LVP, recruiting one patient into each arm. Technical insertion success was 100%, with low rates of non-infectious complications (<12%), none life threatening. Rates of bacterial peritonitis were not unacceptably high (12.7%), considering this was an end-stage liver disease population and only a minority utilising long-term prophylactic antibiotics. Only one study attempted quality-of-life assessments; none addressed potential health economic benefits.
CONCLUSIONS: Despite lack of well-designed studies, preliminary data suggests low significant complication rates; however safety and efficacy of permanent indwelling peritoneal catheters in end-stage liver disease remains to be confirmed. Further prospective randomised controlled trials are warranted, potentially translating permanent indwelling peritoneal catheters into improved palliative care in end-stage liver disease. This article is protected by copyright. All rights reserved.
This chapter describes design and implementation considerations for clinical trials that evaluate behavioral interventions in hospice and palliative care. We discuss traditional and emerging approaches to randomization and data analysis, considering the unique challenges of the setting including the unpredictable and often stressful conditions that participants find themselves in when dealing with advanced illness and how these affect their ability to participate in prescribed and standardized study procedures. In addition, we discuss considerations for recruitment and retention of participants and methodological approaches such as intention to treat. We also explore options for economic considerations when evaluating an intervention.
Background: Substituted judgment assumes adequate knowledge of patient’s mind-set. However, surrogates’ prediction of individual healthcare decisions is often inadequate and may be based on shared background rather than patient-specific knowledge. It is not known whether surrogate’s prediction of patient’s integrative life-story narrative is better.
Methods: Respondents in 90 family pairs (30 husband-wife, 30 parent-child, 30 sibling-sibling) rank-ordered 47 end-of-life statements as life-story narrative measure (Q-sort) and completed instruments on decision-control preference and healthcare-outcomes acceptability as control measures, from respondent’s view (respondent-personal) and predicted pair’s view (respondent-surrogate). They also scored their confidence in surrogate’s decision-making (0 to 4 = maximum) and familiarity with pair’s healthcare-preferences (1 to 4 = maximum). Life-story narratives’ prediction was examined by calculating correlation of statements’ ranking scores between respondent-personal and respondent-surrogate Q-sorts (projection) and between respondent-surrogate and pair-personal Q-sorts before (simulation) and after controlling for correlation with respondent-personal scores (adjusted-simulation), and by comparing percentages of respondent-surrogate Q-sorts co-loading with pair-personal vs. respondent-personal Q-sorts. Accuracy in predicting decision-control preference and healthcare-outcomes acceptability was determined by percent concordance. Results were compared among subgroups defined by intra-pair relationship, surrogate’s decision-making confidence, and healthcare-preferences familiarity.
Results: Mean (SD) age was 35.4 (10.3) years, 69% were females, and 73 and 80% reported = very good health and life-quality, respectively. Mean surrogate’s decision-making confidence score was 3.35 (0.58) and 75% were = familiar with pair’s healthcare-preferences. Mean (95% confidence interval) projection, simulation, and adjusted-simulation correlations were 0.68 (0.67–0.69), 0.42 (0.40–0.44), and 0.26 (0.24–0.28), respectively. Out of 180 respondent-surrogate Q-sorts, 24, 9, and 32% co-loaded with respondent-personal, pair-personal, or both Q-sorts, respectively. Accuracy in predicting decision-control preference and healthcare-outcomes acceptability was 47 and 52%, respectively. Surrogate’s decision-making confidence score correlated with adjusted-simulation’s correlation score (rho = 0.18, p = 0.01). There were significant differences among the husband-wife, parent-child, and sibling-sibling subgroups in percentage of respondent-surrogate Q-sorts co-loading with pair-personal Q-sorts (38, 32, 55%, respectively, p = 0.03) and percent agreement on healthcare-outcomes acceptability (55, 35, and 67%, respectively, p = 0.002).
Conclusions: Despite high self-reported surrogate’s decision-making confidence and healthcare-preferences familiarity, family surrogates are variably inadequate in simulating life-story narratives. Simulation accuracy may not follow the next-of-kin concept and is 38% based on shared background.
BACKGROUND: Accessible indicators of aggressiveness of care at the end-of-life are useful to monitor implementation of early integrated palliative care practice. To determine the intensity of end-of-life care from exhaustive data combining administrative databases and hospital clinical records, to evaluate its variability across hospital facilities and associations with timely introduction of palliative care (PC).
METHODS: For this study designed as a decedent series nested in multicentre cohort of advanced cancer patients, we selected 997 decedents from a cohort of patients hospitalised in 2009-2010, with a diagnosis of metastatic cancer in 3 academic medical centres and 2 comprehensive cancer centres in the Paris area. Hospital data was combined with nationwide mortality databases. Complete data were collected and checked from clinical records, including first referral to PC, chemotherapy within 14 days of death, >=1 intensive care unit (ICU) admission, >=2 emergency department visits (ED), and >= 2 hospitalizations, all within 30 days of death.
RESULTS: Overall (min-max) indicator values as reported by facility providing care rather than the place of death, were: 16% (8-25%) patients received chemotherapy within 14 days of death, 16% (6-32%) had >=2 admissions to acute care, 6% (0-15%) had >=2 emergency visits and 18% (4-35%) had >=1 intensive care unit admission(s). Only 53% of these patients met the PC team, and the median (min-max) time between the first intervention of the PC team and death was 41 (17-112) days. The introduction of PC > 30 days before death was independently associated with lower intensity of care.
CONCLUSIONS: Aggressiveness of end-of-life cancer care is highly variable across centres. This validates the use of indicators to monitor integrated PC in oncology. Disseminating a quality audit-feedback cycle should contribute to a shared view of appropriate end-of-life care objectives, and foster action for improvement among care providers.
Context: Although palliative care is rapidly being disseminated throughout Japan as a result of government policy, a systematic syllabus of palliative medicine for physicians has not been developed.
Aims: This study aimed to develop a Japanese national consensus syllabus of palliative medicine for physicians.
Design: We used a modified Delphi method to develop the consensus syllabus.
Methods and Setting: We created a Delphi panel by selecting 20 expert eligible panelists consisting of Diplomate or Faculty of the Specialty Board of Palliative Medicine and certified by the Japanese Society for Palliative Medicine. We inducted external reviewers from 11 palliative care-related organizations.
Results: Among 20 experts surveyed, 20 (100%) responded over all rounds. Ten (50%) participated in a panel meeting. In the first round, 179 of 179 (100%) learning objectives were judged to be appropriate and 5 of 179 (3%) learning objectives were judged to be too difficult. In the panel meeting, 25 learning objectives were excluded, three new learning objectives were added, and 15 learning objectives were reworded. In the second round, 18 of 18 (100%) learning objectives were judged to be appropriate. The final version of the syllabus developed consists of 157 specific behavioural objectives and 22 general instructional objectives across 22 courses.
Conclusions: We have developed the first national consensus syllabus of palliative medicine for physicians in Japan. Based on this syllabus, a training program on palliative medicine will be established by training facilities in Japan, and physicians will be able to practice specific palliative care.