Background: Few measures exist to assess the quality of care received by home care clients, especially at the end of life.
Objective: This project examined the rates across a set of quality indicators (QIs) for seriously ill home care clients.
Design: This was a cross-sectional descriptive analysis of secondary data collected using a standardized assessment tool, the Resident Assessment Instrument for Home Care (RAI-HC).
Setting/Subjects: The sample included RAI-HC data for 66,787 unique clients collected between January 2006 and March 2018 in six provinces. Individuals were defined as being seriously ill if they experienced a high level of health instability, had a prognosis of less than six months, and/or had palliative care as a goal of care.
Measurements: We compared individuals with cancer (n = 21,119) with those without cancer (n = 47,668) on demographic characteristics, health-related outcomes, and on 11 QIs.
Results: Regardless of diagnosis, home care clients experienced high rates (i.e., poor performance) on several QIs, namely the prevalence of falls (cancer = 42.4%; noncancer = 55%), daily pain (cancer = 48.3%; noncancer = 43.2%), and hospital admissions (cancer = 48%; noncancer = 46.6%). The QI rates were significantly lower (i.e., better performance) for the cancer group for three out of the 11 QIs: falls (absolute standardized difference [SD] = 0.25), caregiver distress (SD = 0.28), and delirium (SD = 0.23).
Conclusions: On several potential QIs, seriously ill home care clients experience high rates, pointing to potential areas for quality improvement across Canada.
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.
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.
La France a été pionnière en matière de législation dans le domaine de la bioéthique, de la loi de 1988 à sa dernière révision en 2011. La loi relative à la bioéthique pose un ensemble de règles juridiques gouvernant l'ensemble des pratiques médicales et/ou de recherche, dont l'objet est le corps humain et l'embryon en tant que ressource ou entité biologique. Dans le cadre de la révision de la dernière loi de 2011, le comité consultatif national d'éthique pour les sciences de la vie et de la santé (CCNE) a piloté un débat organisé sous la forme d' "États généraux" en s'appuyant sur la mobilisation des Espaces de réflexion éthique régionaux, un site web dédié, des auditions d'associations, d'institutions et de représentants de courants de pensée, ainsi que de sociétés savantes et de Comités d'éthique nationaux. Il a également souhaité qu'un Comité citoyen apporte une analyse critique sur le déroulement du débat public et qu'un médiateur réponde aux critiques sur son organisation. Le CCNE, qui a lancé officiellement les États généraux le18 janvier 2018, a mis fin à la consultation le 30 avril 2018 avec cependant la tenue de quelques auditions et d'une réunion du Comité citoyen, jusqu'au 24 mai. L'ensemble des contributions a été analysé par le CCNE et rassemblé dans le présent rapport. Sont présentés, la méthode et la démarche, les sujets discutés et les propositions faites autour des neuf thématiques et les enseignements à tirer du processus de débat public mis en oeuvre.
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Objectives: Although transthyretin (TTR) is a nutritional indicator and is influenced by systemic inflammation, it may be a good prognostic indicator for cancer patients in palliative care settings. This study investigates the correlation between low TTR levels and survival among cancer patients in palliative care settings.
Methods: This was a sub-analysis of a prospective, multicenter cohort study. Patients who had advanced-stage cancer and who were newly referred to palliative care services were eligible to participate; however, those receiving anti-tumor therapy were excluded. Survival analyses were performed to clarify predictors of poor prognosis.
Results: A total of 144 patients were enrolled (45.1% female; median age, 72 years). Cox regression analysis revealed that low TTR levels (<10.9 mg/l) (hazard ratio 1.74, P = 0.025), poor muscle power (1.71, P = 0.045), and fatigue (1.89, P = 0.024) were predictors of poor prognosis. Median survival in patients with low TTR levels (<10.9 mg/l) was 26 days, which was significantly shorter than those with high TTR levels (=10.9 mg/l) (50 days; P < 0.001).
Conclusion: Low TTR levels may be indicators for poor prognosis among cancer patients in palliative care settings.
BACKGROUND: Currently, there are no formalized measures for the quality of home based palliative care in Ontario. This study developed a set of potential quality indicators for seriously ill home care clients using a standardized assessment.
METHODS: Secondary analysis of Resident Assessment Instrument for Home Care data for Ontario completed between 2006 and 2013 was used to develop quality indicators (QIs) thought to be relevant to the needs of older (65+) seriously ill clients. QIs were developed through a review of the literature and consultation with subject matter experts in palliative care. Serious illness was defined as a prognosis of less than 6 months to live or the presence of severe health instability. The rates of the QIs were stratified across Ontario's geographic regions, and across four common life-limiting illnesses to observe variation.
RESULTS: Within the sample, 14,312 clients were considered to be seriously ill and were more likely to experience negative health outcomes such as cognitive performance (OR = 2.77; 95% CI: 2.66â€“2.89) and pain (OR = 1.59; 95% CI: 1.53â€“1.64). Twenty subject matter experts were consulted and a list of seven QIs was developed. Indicators with the highest overall rates were prevalence of falls (50%) prevalence of daily pain (47%), and prevalence of caregiver distress (42%). The range in QI rates was largest across regions for prevalence of caregiver distress (21.5%), the prevalence of falls (16.6%), and the prevalence of social isolation (13.7%). Those with some form of dementia were most likely to have a caregiver that was distressed (52.6%) or to experience a fall (53.3%).
CONCLUSION: Home care clients in Ontario who are seriously ill are experiencing high rates of negative health outcomes, many of which are amenable to change. The RAI-HC can be a useful tool in identifying these clients in order to better understand their needs and abilities. These results contribute significantly to the process of creating and validating a standardized set of QIs that can be generated by organizations using the RAI-HC as part of normal clinical practice.
CONTEXT: Palliative Care advocates argue that service implementation is feasible in all settings. Yet, services have developed patchily in low and middle-income settings. Beyond Human Development Index indicators, there has been limited engagement with the broader development challenges facing nations tasked with implementing palliative care.
OBJECTIVE: To describe how indicators of national development relate to levels of palliative care services in 207 countries around the world.
METHODS: Ecological study to identify relationships between potential predictor variables and the level of national palliative care development. A total of 28 predictor variables from the following 6 domains were selected using hypothesised relationships with levels of palliative care development: disease demographics, socioeconomics, health systems, politics, demographics and economics. The outcome variable was level of national palliative care development on a six-point scale. Spearman's correlation was used to measure the strength of the association.
RESULTS: Twenty-six out of 28 variables were statistically significantly associated with levels of palliative care development in 207 countries. Palliative care is more developed in countries with high: percentage of deaths from non-communicable disease; population proportion aged 65+; gross national income and tourism. Development is lower in countries with high levels of: political corruption; infant mortality; deaths by infectious diseases; and weak democracy. Prevalence of under-nourishment and levels of private health expenditure were not significantly associated with palliative care development.
CONCLUSION: Palliative care development is highly consistent with broader national development indicators. It is less in countries where sudden deaths are more likely and benefits from palliative care provision are likely to be very limited. In such countries, resources may be prioritised towards life prolonging therapies and key aspects of palliative care need only be implemented prior to fully integrated palliative services. Findings suggest that there may be a 'tipping point' in societies, where the relative need for life-prolonging therapies becomes less than the need for integrated palliative care services.
Background: Indicators assessing national-level palliative care (PC) development used for cross-national comparison depict progress on this field. There is current interest on its inclusion in global monitoring frameworks.
Objective: Identify and conceptualize those most frequently used for international PC development reporting.
Design: Systematic review.
Data Sources: PubMed, CINAHL, Google Scholar, and Google targeting national-level development indicators used for cross-national comparison. Additional search requesting experts' suggestions on key studies and â€œsnow-ballingâ€ on reference section of all included studies. Identified indicators were listed and categorized in dimensions: services, use of medicines, policy, and education.
Results: Fifty-four studies were included. Development has been evaluated using 480 different formulations of 165 indicators, 38 were highly reported. Thirty-two fell into proposed dimensions, 11 for use of medicines, 9 for policy, 7 for services, and 5 for education. Six into complementary dimensions: research, professional activity, and international cooperation. Six were the most frequently used indicators: number of PC services per population (40 reports), existence of PC national plan, strategy, or program (25), existence of palliative medicine specialization (22), availability and allocation of funds for PC (13), medical schools, including PC, in undergraduate curricula (13), and total use of opioids-morphine equivalents (11).
Conclusion: There is a clear pattern for national-level PC development evaluation repeatedly using a small number of indicators. Indicators addressing generalistic provision, integration into health systems, and specific fields such as pediatric lack. This study invites international discussion on a global consensus on PC-development assessment.
BACKGROUND: Specialized pediatric palliative care programs aim to improve quality of life and ease distress of patients and their families across the illness trajectory. These programs require further development, which should be based on how they improve outcomes for patients, families, health care professionals, and the health care system.
OBJECTIVE: To identify and compare definitions of indicators used to assess the impact of specialized pediatric palliative care programs.
DESIGN: The scoping review protocol was prospectively registered on PROSPERO 2017 (CRD42017074090).
DATE SOURCES: MEDLINE, PsycINFO, Cochrane Central Register of Controlled Trials, Web of Science, CINAHL, Scopus, and Embase databases were searched from January 2000 to September 2018. Eligible studies included randomized controlled trials, experimental studies, or observational studies that compared specialized programs with usual care. Studies were excluded if most care recipients were older than 19 years or the article was not available in English, French, German, or Spanish.
RESULTS: Forty-six studies were included; one was a randomized controlled trial. We identified 82 different indicators grouped into 14 domains. The most common indicators included the following: location of death, length of stay in hospital, and number of hospital admissions. Only 22 indicators were defined identically in at least 2 studies. Only one study included children's perspectives in assessing indicators.
CONCLUSIONS: Many indicators were used to assess program outcomes with little definition consensus across studies. Development of a set of agreed-upon indicators to assess program impact concurrent with family and patient input is essential to advance research and practice in pediatric palliative care.
BACKGROUND:: The goal of Palliative Day Services is to provide holistic care that contributes to the quality of life of people with life-threatening illness and their families. Quality indicators provide a means by which to describe, monitor and evaluate the quality of Palliative Day Services provision and act as a starting point for quality improvement. However, currently, there are no published quality indicators for Palliative Day Services.
AIM: To develop and provide the first set of quality indicators that describe and evaluate the quality of Palliative Day Services.
DESIGN AND SETTING:: A modified Delphi technique was used to combine best available research evidence derived from a systematic scoping review with multidisciplinary expert appraisal of the appropriateness and feasibility of candidate indicators. The resulting indicators were compiled into 'toolkit' and tested in five UK Palliative Day Service settings.
RESULTS:: A panel of experts independently reviewed evidence summaries for 182 candidate indicators and provided ratings on appropriateness, followed by a panel discussion and further independent ratings of appropriateness, feasibility and necessity. This exercise resulted in the identification of 30 indicators which were used in practice testing. The final indicator set comprised 7 structural indicators, 21 process indicators and 2 outcome indicators.
CONCLUSION:: The indicators fulfil a previously unmet need among Palliative Day Service providers by delivering an appropriate and feasible means to assess, review, and communicate the quality of care, and to identify areas for quality improvement.
BACKGROUND: Identifying people who are at risk of deteriorating and dying is essential to inform goals of care, appropriate treatment decisions, patient autonomy, and effective end-of-life care. Limited literature exists on predicting survival near the end of life for people with a hematological malignancy.
OBJECTIVE: To identify the key clinical indicators that signal a person with a hematological malignancy is at high risk of deteriorating and dying.
DESIGN, SETTING, PARTICIPANTS: Eleven clinical indicators identified in a Delphi approach were tested via a retrospective case–control study. Each indicator was assessed for at each in-patient admission between living (n = 236) and deceased (n = 120) people with a hematological malignancy who were admitted to a large tertiary hospital between 1st July 2014 and 31st December 2015.
RESULTS: Six clinical indicators were independently associated with mortality in the final three months of life: declining performance status (Odds Ratio [OR] 7.153, 95% Confidence Intervals [CI] 3.281–15.597, p = < 0.001); treatment limitations of the hematological malignancy (OR 7.855, 95% CI 3.528–17.489, p = < 0.001); relapse, refractory or persistent disease (OR 3.749, 95% CI 1.749–8.039, p = 0.001); presence of two or more comorbidities (OR 2.991, 95% CI 1.319–6.781, p = 0.009); invasive fungal infections (OR 4.887, 95% CI 1.197–19.949, p = 0.027); and persistent infections (OR 6.072, 95% CI 2.551–14.457, p = < 0.001).
CONCLUSIONS: This study has identified six clinical indicators that signal a person with a hematological malignancy is at high risk of deteriorating and dying and may benefit from an assessment of palliative needs and proactive planning, along-side appropriate treatment.
BACKGROUND: Palliative surgical procedures are frequently performed to reduce symptoms in patients with advanced cancer, but quality is difficult to measure.
OBJECTIVE: To determine whether natural language processing (NLP) of the electronic health record (EHR) can be used to (1) identify a population of cancer patients receiving palliative gastrostomy and (2) assess documentation of end-of-life process measures in the EHR.
DESIGN/SETTING: Retrospective cohort study of 302 adult cancer patients who received a gastrostomy tube at a single tertiary medical center.
MEASUREMENTS: Sensitivity and specificity of NLP compared to gold standard of manual chart abstraction in identifying a palliative indication for gastrostomy tube placement and documentation of goals of care discussions, code status determination, palliative care referral, and hospice assessment.
RESULTS: Among 302 cancer patients who underwent gastrostomy, 68 (22.5%) were classified by NLP as having a palliative indication for the procedure compared to 71 patients (23.5%) classified by human coders. Human chart abstraction took >2600 times longer than NLP (28 hours vs. 38 seconds). NLP identified the correct patients with 95.8% sensitivity and 97.4% specificity. NLP also identified end-of-life process measures with high sensitivity (85.7%-92.9%,) and specificity (96.7%-98.9%). In the two months leading up to palliative gastrostomy placement, 20.5% of patients had goals of care discussions documented. During the index hospitalization, 67.7% had goals of care discussions documented.
CONCLUSIONS: NLP offers opportunities to identify patients receiving palliative surgical procedures and can rapidly assess established end-of-life process measures with an accuracy approaching that of human coders.
BACKGROUND: Successful implementation of a comprehensive accountability system for community-based serious illness care will require a robust data infrastructure. Data will be needed to support care delivery, quality measurement, value-based payment, and evaluation and monitoring.
OBJECTIVE: The specific data needs in these areas need to be identified and understood, so that gaps in currently available data may be addressed.
DESIGN: We developed a framework that includes the needed data and data infrastructure to support the features and characteristics of a serious illness care accountability system. Based on this framework, we analyze the current data landscape to identify gaps in available data resources and capacities. This analysis was informed by conducting Internet-based research, interviews with key informants, and a survey of key informants.
RESULTS: Based on the identified gaps, we present a series of priority recommendations for advancing the data infrastructure to support community-based serious illness care. These recommendations include additional measurement of patient-reported outcomes, increasing interoperability among various data sources, increasing development and exchange of patient care plans, leveraging newly standardized data on patient functional and cognitive status, and using patient-reported information for clinical decision support at the point of care.
CONCLUSION: There are significant unmet data needs for a comprehensive accountability system in serious illness care, but these gaps can be prioritized and addressed through alignment and collaboration across stakeholders.
OBJECTIVE: To determine the timing of palliative care (PC) access, symptoms, and end-of-life (EOL) quality care outcomes of patients with advanced nonsmall cell lung cancer (NSCLC) referred to outpatients embedded palliative care consults (EPC) compared with those of outpatients palliative care consults (OPC).
BACKGROUND: There are no studies comparing the outcomes of outpatients EPC consults with those of stand-alone OPC consults among patients with NSCLC.
DESIGN: The design consists of a random sample of OPC consults (January 2009 to July 2012) and EPC consults (August 2012 to June 2013) at MD Anderson Cancer Center. After the initial consult, all EPC follow-ups occurred at the OPC clinic.
MEASUREMENTS: Patients' characteristics, symptoms (assessed by Edmonton Symptom Assessment Scale), time from referral to first consult, overall survival from consult to death, and EOL quality care outcomes (ICU admissions, emergency center visits, hospitalizations within last 30 days, cancer treatments within last 14 days, hospice referrals, advanced care planning [ACP] discussions, and completion of advanced directives) were reviewed.
RESULTS: A total of 340 consults were included (EPC consults = 147). Baseline Eastern Cooperative Oncology Group status (2.2 vs. 1.9, p < 0.001) and median pain (6 vs. 5, p = 0.038) were higher among EPC consults. In EPC consults, time from referral to first consult was shorter (median: 0 day vs. 7 days, p < 0.001), and ACP discussions occurred more frequently (90% vs. 77%, p = 0.026), and earlier (median: 2 month vs. 1 month before death, p = 0.018). No other significant differences in symptoms, EOL outcomes, or survival were observed.
CONCLUSIONS: EPC consults plus OPC follow-ups accessed PC earlier, and had more frequent and earlier ACP discussions as compared with OPC consults. Embedded palliative cancer care might not be the ideal model for an initial PC consultation. Further research is necessary.
Background: A recent international consensus panel identified 13 major indicators to assess the level of integration between oncology and palliative care. We examined these indicators among European Society for Medical Oncology (ESMO) Designated Centres (ESMO-DCs) of Integrated Oncology and Palliative Care (PC) and determined the centre characteristics associated with greater integration.
Methods: This is a preplanned secondary analysis of a recent survey to characterise the structure, processes and outcomes of the palliative care programmes at ESMO-DCs. We assessed the level of integration using 13 major indicators. We calculated two Palliative Care and Oncology Integration Indexes consisting of all 13 indicators (PCOI-13, range 0-13) and 9 of the 13 indicators (PCOI-9, range 0-9), with a higher index indicating greater integration.
Results: The survey response rate was 152/184 (83%). Among the 13 major indicators, interdisciplinary team was most likely to be achieved (95%), while early referral to palliative care (median time from referral to death >6 months before death) was only present in 24 (20%) of ESMO-DCs. The median PCOI-13 was 7.8 (IQR 6.4-9.6) and the median PCOI-9 was 6 (IQR 5-7). The presence of dually trained palliative oncologists was associated with higher PCOI-13 (median 8.4 vs 7.0; p=0.01) and PCOI-9 (median 6 vs 5; p=0.03). Non-tertiary hospitals generally had higher PCOI-13 (median 8.6 vs 7.2; p=0.01) and ESMO-DCs outside of Europe had higher PCOI-9 (median 7 vs 6; p=0.03).
Conclusions: Assessment of the level of integration at ESMO-DCs with PCOIs highlighted strengths, areas for further development and how double-boarded palliative oncologists may promote integration.
BACKGROUND: Measuring the quality of palliative care in a systematic way using quality indicators can illuminate differences between patient groups.
AIM: To investigate differences in the quality of palliative care in primary care between people who died of cancer and people who died of organ failure.
DESIGN: Mortality follow-back survey among general practitioners in Belgium, the Netherlands, and Spain (2013-2014), and Italy (2013-2015). A standardized registration form was used to construct quality indicators regarding regular pain measurement, acceptance of the approaching end of life, communication about disease-related topics with patient and next-of-kin; repeated multidisciplinary consultations; involvement of specialized palliative care; place of death; and bereavement counseling.
SETTING/PARTICIPANTS: Patients (18+) who died non-suddenly of cancer, cardiovascular disease, or respiratory disease (n = 2360).
RESULTS: In all countries, people who died of cancer scored higher on the quality indicators than people who died of organ failure, particularly with regard to pain measurement (between 17 and 35 percentage-point difference in the different countries), the involvement of specialized palliative care (between 20 and 54 percentage points), and regular multidisciplinary meetings (between 12 and 24 percentage points). The differences between the patient groups varied by country, with Belgium showing most group differences (eight out of nine indicators) and Spain the fewest (two out of nine indicators).
CONCLUSION: People who died of organ failure are at risk of receiving lower quality palliative care than people who died of cancer, but the differences vary per country. Initiatives to improve palliative care should have different priorities depending on the healthcare and cultural context.
INTRODUCTION: Large-scale evaluations of the quality of end-of-life care in people with COPD are lacking. By means of a validated set of quality indicators, this study aims to: 1. Assess appropriateness of end-of-life care in people dying from COPD, 2. Examine variation between care regions, 3. Establish performance standards.
METHODS: We conducted a retrospective observational study of all deaths from COPD (ICD10 codes J41-J44) in 2012 in Belgium, using data from administrative population-level databases. QI scores were risk-adjusted for comparison between care regions.
RESULTS: 4,231 people died from COPD. During the last 30 days of life, 60% was admitted to hospital, 11.8% received specialized palliative care. Large regional variation was found in specialized palliative care use (4.0% to 32.0%) and diagnostic testing in the last 30 days of life (44.0% to 69.7%). Based on best performing quartile scores, relative standards were set (e.g. =54.9% for diagnostic testing)
CONCLUSION: Our study found indications of inappropriate end-of-life care in people with COPD, such as high percentages of diagnostic testing and hospital admissions and low proportions receiving specialized palliative care. Risk-adjusted variation between regions was high for several QIs, indicating the usefulness of relative performance standards to improve quality of end-of-life COPD care.
Background: measuring the quality of primary palliative care for older people with dementia in different countries is important to identify areas where improvements can be made.
Objective: using quality indicators (QIs), we systematically investigated the overall quality of primary palliative care for older people with dementia in three different countries.
Design/setting: a mortality follow-back survey through nation- and region-wide representative Sentinel Networks of General Practitioners (GPs) in Belgium, Italy and Spain. GPs registered all patient deaths in their practice. We applied a set of nine QIs developed through literature review and expert consensus.
Subjects: patients aged 65 or older, who died non-suddenly with mild or severe dementia as judged by GPs (n = 874).
Results: findings showed significantly different QI scores between Belgium and Italy for regular pain measurement (mild dementia: BE = 44%, IT = 12%, SP = 50% | severe dementia: BE = 41%, IT = 9%, SP = 47%), acceptance of approaching death (mild: BE = 59%, IT = 48%, SP = 33% | severe: BE = 41%, IT = 21%, SP = 20%), patient-GP communication about illness (mild: BE = 42%, IT = 6%, SP = 20%) and involvement of specialised palliative services (mild: BE = 60%, IT = 20%, SP = 77%). The scores in Belgium differed from Italy and Spain for patient-GP communication about medical treatments (mild: BE = 34%, IT = 12%, SP = 4%) and repeated multidisciplinary consultations (mild: BE = 39%, IT = 5%, SP = 8% | severe: BE = 36%, IT = 10%, SP = 8%). The scores for relative-GP communication, patient death outside hospitals and bereavement counselling did not differ between countries.
Conclusion: while the countries studied differed considerably in the overall quality of primary palliative care, they have similarities in room for improvement, in particular, pain measurement and prevention of avoidable hospitalisations.
CONTEXT: Maximizing value in palliative care requires continued development and standardization of communication quality indicators.
OBJECTIVES: To describe the basic epidemiology of a newly-adopted patient-centered communication quality indicator for hospitalized palliative care patients with advanced cancer.
METHODS: Cross-sectional analysis of 207 advanced cancer patients who received palliative care consultation at two medical centers in the United States. Participants completed the Heard & Understood quality indicator immediately before and the day following the initial palliative care consultation: "Over the past two days ["24 hours" for the post-consultation version], how much have you felt heard and understood by the doctors, nurses and hospital staff? Completely/Quite a Bit/Moderately/Slightly/Not at All". We categorized "Completely" as indicating ideal quality.
RESULTS: Approximately one-third indicated ideal Heard & Understood quality before palliative care consultation. Age, financial security, emotional distress, preferences for comfort-longevity tradeoffs at end-of-life, and prognosis expectations were associated with pre-consultation quality. Among those with less-than-ideal quality at baseline, 56% rated feeling more Heard & Understood the day following palliative care consultation. The greatest pre-post improvement was among people who had unformed end-of-life treatment preferences or who reported having "no idea" about their prognosis at baseline.
CONCLUSION: Most patients felt incompletely heard and understood at the time of referral to palliative care consultation and more than half improved following consultation. Feeling heard and understood is an important quality indicator sensitive to interventions to improve care and key variations in the patient experience.
Background: A substantial amount of aggressive life-prolonging treatments in the final stages of life has been reported for people with progressive life-shortening conditions. Monitoring appropriate and inappropriate end-of-life care is an important public health challenge and requires validated quality indicators.
Aim: To develop indicators of appropriate and inappropriate end-of-life care for people with cancer, chronic obstructive pulmonary disease or Alzheimer’s disease, measurable with population-level administrative data.
Design: modified RAND/UCLA appropriateness method.
Setting/participants: Potential indicators were identified by literature review and expert interviews and scored in a survey among three panels of experts (one for each disease group). Indicators for which no consensus was reached were taken into group discussions. Indicators with consensus among the experts were retained for the final quality indicator sets.
Results: The final sets consist of 28 quality indicators for Alzheimer’s disease, 26 quality indicators for cancer and 27 quality indicators for chronic obstructive pulmonary disease. The indicator sets measure aspects of aggressiveness of care, pain and symptom treatment, specialist palliative care, place of care and place of death and coordination and continuity of care.
Conclusion: We developed a comprehensive set of quality indicators of appropriate and inappropriate end-of-life care in people with Alzheimer’s disease, cancer or chronic obstructive pulmonary disease, to be used in population-level research. Our focus on administrative healthcare databases limits us to treatment and medication, excluding other important quality aspects such as communication, which can be monitored using complementary approaches. Nevertheless, our sets will enable an efficient comparison of healthcare providers, regions and countries in terms of their performance on appropriateness of end-of-life care.