BACKGROUND: Palliative care guidelines and quality measures have been developed in many countries to improve the quality of care. The challenge is to implement quality measures nationally to improve quality of care across all settings.
OBJECTIVE: This article describes the development and implementation of National Guidelines for Palliative Care (NGPC) in Singapore.
DESIGN: The NGPC was developed through literature review, multidisciplinary inputs, and modified RAND Delphi method. Quality measures for the guidelines were developed through literature review and multidisciplinary inputs and implemented with an audit of specialist palliative care providers.
RESULTS: The NGPC consisted of 13 guidelines and 64 quality measures. A total of 11 palliative care services (73.3%) participated in the audit from September 2015 to October 2015. National-level and service-level gaps in quality of care were identified and individual providers identified priority areas for improvement.
CONCLUSION: We successfully developed the national palliative care guidelines and quality measures. We implemented voluntary self-assessment among health care institutions in various settings nationally that serve to catalyze quality improvement and cultivate a culture of quality improvement.
BACKGROUND: Nursing homes are becoming a common site where delivering end-of-life care for older adults. They often represent the junction between the curative and the palliative phase.
AIM: To identify the elements that nursing home residents' family carers perceive as good end-of-life care and develop a conceptual model of good end-of-life care according to the family perspective.
DESIGN: Systematic review (PROSPERO no. 95581) with meta-aggregation method.
DATA SOURCES: Five electronic databases were searched from inception between April and May 2018. Published qualitative studies (and mixed-method designs) of end-of-life care experience of nursing home family carers whose relative was dead or at the end-of-life were included. No language or temporal limits were applied.
RESULTS: In all, 18 studies met inclusion criteria. A 'life crisis' often resulted in a changed need of care, and the transition towards palliative care was sustained by a 'patient-centered environment'. Family carers described good end-of-life care as providing resident basic care and spiritual support; recognizing and treating symptoms; assuring continuity in care; respecting resident's end-of-life wishes; offering environmental, emotional and psychosocial support; keeping family informed; promoting family understanding; and establishing a partnership with family carers by involving and guiding them in a shared decision-making. These elements improved the quality of end-of-life of both residents and their family, thus suggesting a common ground between good end-of-life care and palliative care.
CONCLUSION: The findings provide a family-driven framework to guide a sensitive and compassionate transition towards palliative care in nursing home.
BACKGROUND: Women with metastatic breast cancer (MBC) experience unique symptom management and psychosocial needs due to aggressive, yet palliative treatment with a progressive, chronic illness.
OBJECTIVE: This article describes the effect of a quality improvement project for coordination of supportive care in MBC. Program evaluations included referral rates for supportive services, patient-reported outcomes of symptom distress, generalized anxiety, and overall well-being.
DESIGN: An interdisciplinary Support, Education and Advocacy Program (MBC-SEA) was developed. The 1-hour, weekly, patient review included collaborative assessments to determine needs for social service, psychological counseling, and palliative care. A prospective pre- and postexperimental cohort design with convenience sampling was used. Analysis was conducted with paired t test analysis of pre- and postimplementation outcomes.
SETTING/PARTICIPANTS: Program outcomes of 118 women with MBC visiting an urban outpatient breast cancer clinic during September 2016 to November 2016 (pre) and January 2017 to March 2017 (post) were evaluated.
MEASUREMENTS: Referral rates to social work and palliative care, symptom, anxiety, and overall well-being scores.
RESULTS: Following program implementation, referrals to palliative care and social work supportive services increased significantly including patient-reported outcomes symptom distress scores mean difference 1.4 (95% confidence interval [CI]: 0.4306-2.6428), P = .004; generalized anxiety scores mean difference 1.5 (95% CI: 0.5406-2.5781), P = .003; and overall well-being mean difference of -0.7 (95% CI: -1.3498 to -0.0570), P = .03.
CONCLUSIONS: Purposeful nurse-led assessment for social service and palliative care needs increases referrals with improvement in patient-reported outcomes.
CONTEXT: The Bereaved Family Survey (BFS) is used to evaluate the quality of end-of-life (EOL) care in VA inpatient settings. The BFS consists of a global Performance Measure (BFS-PM) and three factors that relate to specific aspects of EOL care.
OBJECTIVE: The purpose of this study was to identify empirically-based target scores on each BFS factor that are most strongly related to a rating of "excellent" on the BFS-PM.
METHODS: We conducted a cross-sectional analysis of BFS and Veteran clinical data from January 2012 to January 2016. Logistic regression models were constructed for each potential cut-point on the three BFS factors and accounted for facility case-mix and nonresponse bias. Model fit was assessed primarily using the Liu Index, Bayesian Information Criterion (BIC) and classification accuracy values.
RESULTS: Our analytic sample included 40,180 Veterans whose next-of-kin completed a BFS. The mean BFS response rate across study years was 58%. A score of 14 or higher on the Respectful Care and Communication factor (range 0-15) had the lowest BIC (121355) and highest percent correctly classified (81.2%). The Emotional and Spiritual Support factor (range 0-9) had an optimal score of 8 or higher (BIC=133685; % correctly classified=77.1%). An optimal cut-point on the Benefits factor was not identified.
CONCLUSION: The identification of data-driven targets make BFS factor scores more useful to clinicians and administrators focused on improving quality of EOL care in their facilities. Our results lend support for prioritizing quality improvement efforts related to respectful care and communication.
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.
La prise de décision partagée correspond à l’un des modèles de décision médicale où patient et professionnels de santé délibèrent autour des options disponibles et les hiérarchisent selon les préférences du patient. Des aides à la décision peuvent les aider dans ce dialogue. Elles participent à l’amélioration de la qualité des soins.
PURPOSE: Quality end-of-life care (EoLC) is a key aspect of oncology. Days at home in the last 6 months of life represents a novel, patient-driven quality indicator of EoLC. We measured days at home in a large population of patients with cancer in Ontario, Canada. Trends over time and predictors of more or less time at home were also determined.
METHODS: We conducted a population-based retrospective study using health administrative data linked by unique, encoded identifiers and analyzed at the ICES. Quantile regression was used to determine significant predictors of more or less time at home.
RESULTS: Of 72,987 patients who died of cancer in Ontario, Canada and met our inclusion criteria, the median number of days spent at home in the last 6 months of life was 164 (interquartile range [IQR], 144 to 175 days) of a possible 180 days. Patients with hematologic cancers spent significantly fewer days at home (156; IQR, 134 to 170 days). The strongest predictors of more time at home were male sex (+2.87 days relative to female sex; CI, 2.43 to 3.31 days) and receipt of palliative care before the last 6 months of life (+2.38 days; CI, 1.95 to 2.08 days). Additional predictors included income, age, cancer type, comorbidity burden, and health region. The majority of patients (69.7%) did not die at home.
CONCLUSION: Days at home in the last 6 months of life, obtained from administrative data, can be used as a measure of quality EoLC. Predictors of days at home may prove valuable targets for future policy intervention.
OBJECTIVE: To compare perceptions of various aspects of palliative care for doctors and nurses; and examine factors contributing to perceived quality palliative care in intensive care units (ICUs).
DESIGN: A cross-sectional survey study conducted from November to December 2013. Questionnaires used were Knowledge, Attitudinal and Experiential Survey on Advance Directives (ADs), Clarke's Quality of Palliative Care and Nurses' Participation in the end-of-life (EOL) decision-making process.
SETTING: Seven adult medical and surgical ICUs at a medical center in Northern Taiwan.
PARTICIPANTS: In total, 172 doctors and nurses who worked in adult ICU for more than 3 months.
MAIN OUTCOME MEASURES: Nurses' and doctors' perception of quality palliative care.
RESULTS: Nurses provided better care than doctors in symptom management, comfort care and spiritual care; their participation in EOL decision-making was the sole modifiable contributor to perceived quality palliative care in ICUs (ß = 0.24, P < 0.01). Both doctors and nurses had positive attitudes towards ADs (mean = 4.05/10; standard deviation [SD] = 1.38) while their knowledge of ADs was poor (mean = 29.72/40; SD = 3.00). More than half of nurses currently participated in EOL decision-making and over 80% of doctors and nurses agreed both parties should engage in EOL decision-making process. Majority of doctors (83.9%) reckoned nurses agreed with their EOL decisions while a significant percentage (40%) of nurses were uncertain about doctors’ decisions ( 2 = 12.07, P < 0.01).
CONCLUSIONS: Nurses' participation in EOL decision-making and strengthening spiritual care are imperative to rendering quality palliative care in ICUs. Potential disagreements arose during EOL decision-making between doctors and nurses; and insufficient knowledge of ADs should be addressed.
BACKGROUND: Currently available indicators of quality pediatric palliative care tend to focus on care provided during the end-of-life period rather than care provided throughout the disease trajectory. We adapted a previously developed instrument focused on mothers' perspectives on the quality of end-of-life care and assessed its psychometric properties with mothers and fathers of children with cancer at any stage of the illness.
METHODS: Four subscales were included in the analysis: Connect with Families, Involve Parents, Share Information Among Health Professionals, Support Siblings. The number of items across the four subscales was reduced from 31 to 15. We conducted confirmatory factor analysis, composite reliability, internal consistency, and tests of correlation between the overall scale and subscale totals and a separate question inquiring about overall quality of care. Measurement invariance between mothers and fathers was assessed.
RESULTS: A total of 533 mothers and fathers completed the survey. The four-factor model was confirmed and there were significant correlations between each subscale score and responses to the overall item on care quality. Cronbach's alpha was adequate for the scale as a whole and for each subscale ranging from 0.78 to 0.90. We also found the factor structure, means, and intercepts were similar across mothers and fathers, suggesting the tool can be used by both groups.
CONCLUSIONS: There is evidence for a four-factor structure within a new Quality of Children's Palliative Care Instrument (QCPCI) with demonstrated reliability when used with mothers and fathers of children with cancer. Ongoing assessment of the psychometric properties is needed, including testing in additional populations. However, our initial findings suggest that the QCPCI may be a helpful tool for assessing the quality of palliative care for pediatric patients anywhere along the disease trajectory from the perspective of parents.
BACKGROUND: Effective leadership is necessary to meet the complex care needs of patients with serious, life-limiting illness. The Cambia Health Foundation Sojourns Scholars Program is advancing leadership in palliative care through supporting emerging leaders. The 2016 Cohort has implemented a range of projects to promote their leadership development.
OBJECTIVE: To describe the leadership themes emerging from individual project implementation of the 2016 Sojourns Leadership.
METHODS: We summarize the synthesized leadership themes derived from both remote and in-person meetings and written reflections of the 2016 Cambia Sojourn Leadership Cohort.
RESULTS: The 2016 Cambia Sojourn Leadership Scholar Cohort projects are described. We identified three leadership themes related to palliative care initiatives: openness and flexibility, partnership and team building, and leveraging expertise and risk.
DISCUSSION: Unprecedented challenges in a rapidly changing health environment demand palliative care leadership to influence care quality, delivery, policy, and clinical care. Flexibility and openness; partnership and team building; and expertise to implement change emerged as critical themes to advancing the care of patients with serious, life-limiting illness. These leadership themes are consistent with both previous Cambia Sojourns Scholar cohorts and the literature, are essential for the next generation of leaders to implement new models of quality palliative care, payment for palliative care, and education for patients, caregivers, and health care providers.
CONCLUSION: In order to design and implement quality palliative care, leadership development is essential. Use of flexibility and openness; partnership and team building; and expertise to implement change are important themes for success. Whether through the Cambia Health Foundation Sojourns Leadership Program or opportunities within professional organizations, cultivation of the next generation of leaders is critical.
When patients face advanced illness, their experience of care is especially important. In palliative care, we often rely on the accounts of bereaved relatives to report the quality of end-of-life care, and there are no validated patient-reported measures of the experience of care. We report therefore on a new questionnaire, Views on Care (VOC), to address this gap. It consists of four questions (see the following link for full questionnaire: www.pos-pal.org) selected/refined from St Christopher’s Index of Patient Priorities (SKIPP)1, which address patients’ evaluation of (1) change in their main concerns, (2) benefit from palliative services, (3) previous and (4) current quality of life (3 and 4 adapted from EORTC QLQ-C15-PAL – well-validated in advanced illness2).
Background: Patients with chronic heart failure (CHF) and patients with chronic obstructive pulmonary disease (COPD) are amenable to integrated palliative care (PC); however, despite the recommendation by various healthcare organizations, these patients have limited access to integrated PC services. In this study, we present the protocol of a feasibility prospective study that aims to explore if an "early integrated PC" intervention can be performed in an acute setting (cardiology and pulmonology wards) and whether it will have an effect on (i) the satisfaction of care and (ii) the quality of life and the level of symptom control of CHF/COPD patients and their informal caregivers.
Methods: A before-after intervention study with three phases, (i) baseline phase where the control group receives standard care, (ii) training phase where the personnel is trained on the application of the intervention, and (iii) intervention phase where the intervention is applied, will be carried out in cardiology and pulmonology wards in the University Hospital Leuven for patients with advanced CHF/COPD and their informal caregivers. Eligible patients (both control and intervention group) and their informal caregivers will be asked to complete the Palliative Outcome Scale, the CANHELP Lite, and the Advance Care Planning Questionnaire at the inclusion moment and 3 months after hospital discharge.
Discussion: The present study will assess the feasibility of carrying out PC-focused studies in acute wards for CHF/COPD patients and draw lessons for the further integration of PC alongside standard treatment. Further, it will measure the quality of life and quality of care of patients and thus shed light on the care needs of this population. Finally, it will evaluate the potential efficacy of the "early integrated palliative care" by comparing against existing practices..
BACKGROUND: A challenge for commissioners and providers of end-of-life care in dementia is to translate recommendations for good or effective care into quality indicators that inform service development and evaluation.
AIM: To identify and critically evaluate quality indicators for end-of-life care in dementia.
RESULTS: We found 8657 references, after de-duplication. In all, 19 publications describing 10 new and 3 updated sets of indicators were included in this review. Ultimately, 246 individual indicators were identified as being relevant to dementia end-of-life care and mapped against EAPC guidelines.
CONCLUSIONS: We systematically derived and assessed a set of quality indicators using a robust framework that provides clear definitions of aspects of palliative care, which are dementia specific, and strengthens the theoretical underpinning of new complex interventions in end-of-life care in dementia.
Objective: the aim of this study was to map end-of-life care in acute hospital settings against Elements 1-5 of the Australian Commission on Safety and Quality in Health Care's (ACSQHC) Essential Elements for Safe and High-Quality End-of-Life Care.
Methods: A retrospective medical record audit of deceased in-patients was conducted from 2016 at one public (n = 320) and one private (n = 132) hospital in Melbourne, Australia. Ten variables, key to end-of-life care according to the ACSQHC's Elements 1-5 were used to evaluate end-of-life care.
Results: Most patients (87.2%) had a limitation of medical treatment. In 91.97% (P < 0.0001) of cases, a written entry indicating poor prognosis preceded a documented decision to provide end-of-life care, with a documented decision noted in 81.1% of cases (P < 0.0001). Evidence of pastoral care involvement was found in 41.6% of cases (P < 0.0001), with only 33.1% of non-palliative care patients referred to specialist palliative care personnel (P = 0.059). An end-of-life care pathway was used in 51.1% of cases (P < 0.0001).
Conclusion: There is clear scope for improvement in end-of-life care provision. Health services need to mandate and operationalise Elements 1-5 of the ACSQHC's Essential Elements into care systems and processes, and ensure nationally consistent, high-quality end-of-life care.What is known about the topic? Acute care settings provide the majority of end-of-life care. Despite the ACSQHC's Ten Essential Elements, little is known about whether current end-of-life care practices align with recommendations. What does this paper add? There is room for improvement in providing patient-centred care, increasing family involvement and teamwork, describing and enacting goals of care and using triggers to prompt care. Differences between public and private hospitals may be the result of differences in standard practice or policy and differences in cultural diversity.What are the implications for practitioners? The Essential Elements need to be mandated and operationalised into mainstream care systems and processes as a way of ensuring safe and high-quality end-of-life care.
BACKGROUND: Indicators for the quality of palliative care are a priority of caregivers and managers to allow improvement of various care settings and their comparison. The involvement of patients and families is of paramount, although this is rarely achieved in practice. No validated assessment tools are available in French. Simple cultural adaption of existing questionnaires may be insufficient, due to the varying organization of care in different countries. The purpose of this study was to develop and validate a new instrument to measure the quality of palliative care and satisfaction from the patient point of view.
METHODS: Results from a qualitative study were used by a multi-professional workgroup to construct an initial set of 42 items exploring six domains. A cross-sectional survey was conducted in seven hospitals, encompassing three care settings: two palliative care units, one palliative care hospital, and four standard medical units with a mobile palliative care team. All items were assessed for acceptability. We conducted exploratory structural analysis using Principal Component Analysis (PCA), and evaluated external validity by comparison against global rating of satisfaction and the MD Anderson Symptom Inventory (MDASI) questionnaire.
RESULTS: A total of 214 patients completed the questionnaire. After removing 7 items from the response distribution, PCA identified eight interpretable domains from the 35 final items: availability of caregivers, serenity, quality of information, pain management, caregivers’ listening skills, psychosocial and spiritual aspects, possibility to refuse (care or volunteers), and respect for the patient. Internal consistency was good or acceptable for all subscales (Cronbach’s a 0.5–0.84), except the last one (0.15). Factorial structure was found globally maintained across subgroups defined by age, sex, Palliative Performance Scale (PPS = 60%, 40–50% and = 30%), and care settings. General satisfaction was inversely correlated with the 2 scores of the MDASI questionnaire: symptoms’ severity and impact on life. Each subscale, except “possibility to refuse”, correlated with general satisfaction.
CONCLUSIONS: Quali-Palli-Pat appears to be a valid, reliable, and well-accepted French tool to explore the quality of care and the satisfaction of palliative care patients. It should be confirmed in a wider sample of care settings.
PURPOSE: Several studies have identified differences in end-of-life (EOL) care between urban and rural areas, yet little is known about potential differences in care processes or family evaluations of care. The purpose of this study was to examine the relationship between rurality of residence and quality of EOL care within the Veterans Affairs health care system.
METHODS: This study was a retrospective, cross-sectional analysis of 126,475 veterans who died from October 2009 through September 2016 in inpatient settings across 151 facilities. Using unadjusted and adjusted logistic regression, we compared quality of EOL care between urban and rural veterans using family evaluations of care and 4 quality of care indicators for receipt of (1) palliative care consult, (2) a chaplain visit, (3) death in an inpatient hospice unit, and (4) bereavement support.
FINDINGS: Veterans from rural areas had lower odds of dying in an inpatient hospice unit compared to veterans from urban areas, before and after adjustment (large rural OR 0.73, 95% CI: 0.70-0.77; P < .001, small rural OR 0.81, 95% CI: 0.77-0.86; P < .001, isolated rural OR 0.87, 95% CI: 0.81-0.93; P < .001). Differences in comparisons of other quality of care indicators were small and of mixed significance. No significant differences were found in family ratings of care in fully adjusted models.
CONCLUSION: Receipt of some EOL quality indicators differed with urban-rural residence for some comparisons. However, family ratings of care did not. Our findings call for further investigation into unmeasured individual characteristics and facility processes related to rurality.
OBJECTIVES: The aim of this study was to investigate how palliative care service structures and processes correlate with their outputs and outcomes, measuring the latter respectively in terms of intensity of care and death at home.
METHODS: The Veneto Regional Health Authorities collected a set of 37 quality indicators for the year 2016, covering the following five dimensions: service integration, service structure, accessibility, professional processes and organisational processes. Their validity was assessed by a panel of 29 palliative care experts. A score was assigned to each indicator on the basis of its relevance. Non-parametric correlations between the care quality indicators and the measures of the palliative care outputs and outcomes were investigated, along with the presence of a monotonic trend in the performance of the local health units (LHU) grouped by 'low', 'medium' or 'high' scores and differences between these groups of LHUs.
RESULTS: The data showed that palliative care service structure and professional processes were the dimensions correlating significantly with the intensity of care coefficient. An increasingly significant statistical trend was found in both the intensity of care coefficient and the proportion of deaths at home for the three groups of LHUs in terms of the professional processes dimension.
CONCLUSIONS: Despite its limitations, this study brought to light some statistically significant findings that are worth investigating in larger samples. To achieve improvements in the quality of palliative care, it is important for healthcare providers to know which variables most affect the output and especially the outcomes of the services offered.
Few studies have been done assessing the impact of palliative care on patients suffering cardiac arrest and requiring therapeutic hypothermia (TH). We conducted a retrospective cohort study to compare resource utilization and quality indicators among patients undergoing TH with and without palliative care consultation. Data were collected, over a two-year period, from the institutional international cardiac arrest registry database and electronic medical record review. One hundred twenty-nine patients were screened, 102 met inclusion criteria. Sixty-four patients (63%) had a palliative care consult. None of the differences between the groups' prehospital clinical characteristics were significant (functional status p = 0.29; cerebral performance (CPC) score p = 0.16). The overall mortality rate of participants was 53%, with a rate of 47% for the nonpalliative care group and 56% of the palliative care group (p = 0.38). There was a decrease in resource utilization in the palliative care group, with discontinuation in lab tests showing significance (p = 0.04). All quality indicators were addressed more frequently in the palliative care group (p = < 0.0001). More patients in the palliative care group (56%) than in the nonpalliative care group (39%) had a do not resuscitate order placed (p = 0.10). Our results show reduced resource utilization and improved quality of care in patients undergoing TH treatment when palliative care is involved. These findings suggest that palliative care should be an integral part of the treatment guidelines for this patient population.
Since the early 1990s, long-term care policies have undergone significant transformations across OECD countries. In some countries, these changes have responded to the introduction of major policy reforms while in others, significant transformations have come about through the accumulation of incremental policy changes. This book brings together evidence from over 12 years of care reforms to examine changes in long-term care systems occurring in OECD countries. It discusses and compares key changes in national policies and examines the main successes and failures of recent reforms. Finally, it suggests possible policy strategies for the future in the sector.
Origine : BDSP. Notice produite par IRDES qR0xBJl8. Diffusion soumise à autorisation
This book examines the complex operations of the long-term care facility and offers critical skills to current and future long-term care administrators for delivering quality, cost-effective services. Comprehensive, yet concise, the Third Edition explores the necessary skills and tools for creating a person-centered environment. Topics covered include : how to adapt an existing nursing facility, the growing culture change movement, and the laws, regulations, and financing of the long-term care industry, as well as its organization and delivery. Finally, this book offers extensive coverage of the essential skills necessary to manage it all.
Origine : BDSP. Notice produite par IRDES R0x8nEsH. Diffusion soumise à autorisation