Introduction: Poorer end-of-life (EOL) care for elderly cancer patients has been reported. We assessed the impact of age on 13 indicators for the quality of EOL care as well as adherence to 6 national quality indicators in gynaecological cancer patients.
Methods: Age-dependent differences in 13 palliative care quality indicators were studied in gynaecological cancer patients registered in the population-based Swedish Register of Palliative Care. Association between the patient’s age and each quality indicator was analyzed by logistic regression, adjusted for place of death where appropriate. Adherence to six national quality indicators determined by the Swedish National Board of Health and Welfare was estimated in all patients.
Results: We included 3940 patients with the following age distribution: 1.6% were 18–39 years of age, 12.3% 40–59 years, 37.2% 60–74 years, 28.9% 75–84 years and 20% were =85 years. Age-dependent differences in implementation rate were present for some of the 13 quality indicators. Compared to elderly cancer patients, younger patients were more likely to be cared for by a specialized palliative care service, more often informed about imminent death as well as assessed for pain. For most national quality indicators, the goal level was not met. Only for the ‘on demand prescription for pain’, the goal level was reached.
Conclusions: EOL care did not meet national quality indicators in this population-based data from Sweden, in particular in the elderly population. Elderly gynaecological cancer patients are at high risk of poorer EOL care without the involvement of specialized palliative care services. Palliative care services need to be implemented across all institutions of EOL care to ensure good and equal care.
Purpose: Racial and ethnic minority patients receive poorer quality end-of-life (EoL) care compared with white patients. Differences in quality of communication (QOC) with clinicians may contribute to these disparities. We measured differences in satisfaction with communication in the intensive care unit (ICU) by race and ethnicity.
Materials and Methods: This is a cross-sectional survey of family members of patients in ICUs of an academic medical center serving a diverse urban population using The Family Satisfaction with the ICU (FS-ICU) and QOC scales.
Results: One hundred surveys were completed (18.8% white, non-Hispanic; 34.4% black, non-Hispanic; 31.3% Hispanic; 15.6% other race/ethnicity). Mean FS-ICU score was 84.2 (standard deviation [SD] 20.5) for white patients, 83.3 (SD 16.2) for black patients, 82.7 (SD 17.8) for Hispanic or Latino patients, and 80.9 (SD 18.8) for patients with other race/ethnicity (Kruskal-Wallis, P = .92). Differences remained insignificant when controlling for patient and respondent characteristics. The QOC scale was not scored due to nonresponse levels on questions about EoL communication.
Conclusions: Uniformly high ratings may have been influenced by avoidance of EoL discussion. This study is inconclusive regarding whether QOC influences disparities in EoL care since quality of EoL communication was not captured.
The field of critical care nursing is multidimensional and filled with opportunities to bring change to current practice. In the United States, nearly 13% of patients (range, 8%-24%) admitted to an intensive care unit (ICU) die during or after the admission (https://www.dartmouthatlas.org/interactive-apps/end-of-life-care/). Critical care nurses provide care at every stage of acute and chronic illness. Often this includes care of the patient and family at end of life, guided by palliative care principles supported by the national guidelines including the American Association of Critical Care (Dimens Crit Care Nurs 2017;36(2):110-115). While enrolled in the final registered nurse–to–bachelor of science in nursing (RN-to-BSN) course, students are challenged to complete a quality improvement (QI) project. The project leader noted a clinical problem in the ICU. The landmark Dying in America report, as well as published theories on comfort, and the Institute for Healthcare Improvement (IHI) Open School Plan-Do-Study-Act (PDSA) model were used as the theoretical foundation for a clinical practice change. This assignment was the impetus to provide items at the bedside using a comfort cart. Description of this nurse-driven pilot project initiative includes a replicable guide of implementing a comfort care cart, transforming the patient's room into a home-like atmosphere for the families at the bedside.
Background: To provide high quality care to all patients who have serious illness, health-care systems must develop effective generalist palliative care strategies.
Objective: To identify palliative care quality gaps within a range of settings in the California safety net and to develop theory-based interventions to address them.
Design: Structured assessment using the National Consensus Project for Quality Palliative Care Clinical Practice Guidelines and a Predisposing, Reinforcing, and Enabling Constructs in Educational/Environmental Diagnosis and Evaluation intervention planning model-based worksheet, which integrates behavior theories to identify factors that predispose, enable, and reinforce clinicians to perform recommended behaviors.
Setting and Participants: Adviser pairs—one from palliative care and one from a partner service line—from 10 California public health-care systems conducted assessments at their sites. A steering committee provided educational webinars, best practices, and assessment tools.
Measurements: Adviser pairs interviewed at least 6 partner service line stakeholders to identify palliative care quality gaps, behaviors clinicians should perform to close gaps, and factors that predispose, enable, and reinforce those behaviors.
Results: Partner service lines were primary care (n = 4), surgery (n = 3), emergency department (n = 2), and radiation oncology (n = 1). Selected gaps were advance care planning and goals of care communication (n = 6), identifying patients with serious illness (n = 3), and pain management (n = 1). All sites designed multiple interventions to address gaps, based on factors that predispose, enable, and reinforce a target audience to perform a target behavior. Advisers reported that the program strengthened relationships between palliative care and the partner service line
Conclusion: This structured assessment helped busy clinicians develop theory-based generalist palliative care interventions.
Background: Death and dying care is an area with less attention in nursing. This even is evidenced as more challenging in some populations such as neonates. Neonatal intensive care unit (NICU) nurses should be aware of the quality of care they provide for dying neonates and their families to find the areas which need attention.
Objective: The aim of this study was to assess the psychometric features of the Quality of Dying and Death (QODD) questionnaire in NICU nurses in Tehran, the capital city of Iran.
Methods: This methodological study was conducted in 2017. For this purpose, using census method, 130 NICU nurses working in selected hospitals participated. After the backward-forward translation, based on the method proposed by the International Test Commission, the psychometric properties of the Persian QODD were examined through the assessment of the face, content and construct validity, internal consistency, and stability.
Results: Final Persian QODD's content and face validity were accepted through a qualitative method. In the confirmatory factor analysis, the original version of QODD was not confirmed. Subsequently, an exploratory factor analysis was carried out in which phrases were included in three dimensions (symptom control, preparation for death of neonate, and professional attention) that explained 75% of the variance. Cronbach's alpha values ranged from 0.82 to 0.88 for these three dimensions. The intraclass correlation coefficient (ICC) was ICC = 0.94 between two tests performed with a 2-week interval on twenty eligible nurses.
Conclusions: The Persian version of QODD has acceptable psychometric properties in nurses working with the neonatal population and can be used to investigate the NICU nurses' opinion on the QODD provided in NICU patients.
BACKGROUND: Since the introduction of the concept of advance care planning (ACP), many studies have been conducted exploring beneficial effects. These studies show a heterogeneity in clinical endpoints, which reflects diversity of goals connected to ACP. This study aims to get insight in the range of underlying goals that comprise the legitimacy of ACP.
METHODS: Systematic literature search in PubMed, EMBASE, PsychInfo, CINAHL and Cochrane Library. Articles on normative aspects of ACP were included, based on title and abstract. Due to the quantity of inclusions, of which many had similar content, purposive sampling was used to select articles for full text document analysis. Analysis stopped once saturation was reached.
RESULTS: In total, 6497 unique articles were found of which 183 were included. Saturation was reached after document analysis of 55 articles (30%); this yielded 141 codes concerning goals of ACP and also 70 codes about objections against ACP, which shed light on the underlying goals of ACP as well. We identified five underlying goals: respecting individual patient autonomy, improving quality of care, strengthening relationships, preparing for end-of-life, reducing overtreatment.
CONCLUSIONS: Five distinctive underlying goals of ACP were identified, each with corresponding objections that need to be considered. Specifying underlying goals of ACP may direct the debate on definitions, methods and preferred outcomes of ACP. This study was funded by the Netherlands Organisation for Health Research and Development, grant 839120002.
Background: The hospice market has changed substantially, shifting from predominately not-for-profit independent entities to for-profit national chains. Little is known about how hospice organizational characteristics are associated with quality of hospice care.
Objective: To examine the association between hospice characteristics and care processes and performance on measures of hospice care quality.
Design: Logistic regression models assessed the association between hospice characteristics and processes and hospices being in the top quartile of quality measure performance.
Setting/Subjects: U.S. hospices with publicly reported measure scores in 2015-2017.
Measurements: Summaries of hospice-level performance on Consumer Assessment of Healthcare Providers and Systems (CAHPS) Hospice Survey measures (including communication, timely care, symptom management, emotional and spiritual support, respect, training families, overall rating, and willingness to recommend) and Hospice Item Set (HIS) measures (including pain screening and assessment, dyspnea screening and treatment, bowel regimen for patients on opioids, discussion of treatment preferences, and beliefs/values addressed).
Results: Of the 2746 hospices that met public reporting requirements, 5.6% were in the top quartile of both CAHPS and HIS performance. Characteristics associated with being in the top quartile for CAHPS included being a nonprofit and nonchain or government hospice, smaller size (<200 patients per year), and serving a rural area. Characteristics associated with being in the top quartile for HIS included being in a for-profit chain, larger size (91+ patients per year), and having <40% of patients in a nursing home. Providing professional staff visits in the last two days of life to a higher proportion of patients was associated with hospices being in the top quartile of HIS and in the top quartile of CAHPS.
Conclusions: Hospice characteristics associated with strong performance on HIS measures differ from those associated with strong performance on CAHPS measures. Providing professional staff visits in the last two days of life is associated with high performance on both quality domains.
Background: More than 2.5 million older Americans die each year. Place of residence in which dying patients receive care plays a crucial role in the quality of end-of-life (EOL) care.
Objective: This study aimed to compare proxies' overall rating and ratings for 13 indicators across five major domains of EOL care by place of residence in the last month of decedents' lives.
Design: We used data from the National Health and Aging Trends Study, a nationally representative study of Medicare beneficiaries at age 65 years and older in the United States.
Setting/Subjects: Analyses included proxies (N = 1336) of Medicare beneficiaries who passed away between 2013 and 2016. Proxies were categorized into four groups, depending on place of residence in the last month of life and the involvement of hospice.
Measurements: Quality of EOL care was assessed using questions modeled after quality of EOL care instruments. We adjusted for demographic data of decedents and proxies.
Results: Hospice recipients, regardless of setting, were more likely to experience pain and talk about religion in the last month of life; families of patients without hospice in residential care settings were more likely to report not being kept informed; proxies of patients living in private residences with hospice care reported higher overall ratings. Among hospice recipients, those living in private residences were more likely to be treated with respect.
Conclusions: Disparities exist across settings and in overall ratings for quality of EOL domains—particularly, the subdomains of symptom management, decision making, and spiritual needs.
BACKGROUND: It is of great importance to understand how patients and their close relatives experience the pros and cons of advanced home care so as to further develop this quickly growing choice of care.
OBJECTIVE: The aim of this study was to explore the experiences of receiving advanced home care among patients affected by life-threatening illness and their close relatives.
DESIGN: The study was an interview study conducted with patients in their homes. Some patient interviews were conducted together with a close relative participating.
SETTING/PARTICIPANTS: Patients registered in advanced home care in 2017 were offered the opportunity to participate in the study. The selection criteria were that the patient was within grade 3 of the Eastern Cooperative Oncology Group's Performance Status, older than 18 years, able to orient to time and place, and not newly registered.
ANALYSIS: The interviews were recorded and transcribed verbatim and analyzed with qualitative content analysis.
RESULTS: A total of 11 interviews were conducted: 8 with patients and 1 or 2 close relatives together; and 3 with the patient alone. It resulted in 3 main categories: create a safe environment, see the person, and better to manage care at home.
CONCLUSION: The results of this study show that patients and close relatives perceived that advanced home care was a safe and secure form of caring during advanced as well as end-of-life care.
This study aimed to measure the quality of palliative care from the perspective of healthcare professionals at a tertiary hospital in Riyadh, Saudi Arabia. A cross-sectional survey was distributed to 80 healthcare professionals working at the palliative care department. The questionnaire assessed the dimensions that measure the quality of palliative care (Structure and Aspects of Care, Cultural Aspects of Care, Care of the Imminently Dying Patient, Ethical Issues), overall quality of care, ethical Processes of Care, Physical Aspects of Care, Psychological/Psychiatric Aspects dilemmas occurring in the practice setting, and barriers to the provision of optimal end-of-life care. The total mean for the quality for care was 4.26 (SD = 0.45), indicating that all participants’ perceptions regarding all dimensions tended to skew toward agree and strongly agree. However, the score on the psychological/psychiatric aspects of care was the lowest compared to other dimensions, with a mean of 3.7, which means it needs more consideration. Moreover, participants’ mean rate of agreement on the quality of palliative care services was 4.62 out of 5. The majority of the participants agreed that they and their colleagues provided high-quality end-of-life care. Regarding barriers to the provision of optimal end-of-life care, with a mean score of 3.22 out of 5, participants agreed that such barriers existed in the palliative department. The present findings indicate that healthcare providers considered the overall quality of palliative care to be high, but the psychological/psychiatric aspects of care needed further consideration. Further, the occurrence of ethical dilemmas and barriers to the provision of optimal end of life needs to be managed appropriately.
BACKGROUND: The use of Do-Not-Resuscitate (DNR) orders has increased but many are placed late in the dying process. This study is to determine the association between the timing of DNR order placement in the intensive care unit (ICU) and nurses' perceptions of patients' distress and quality of death.
METHODS: 200 ICU patients and the nurses (n = 83) who took care of them during their last week of life were enrolled from the medical ICU and cardiac care unit of New York Presbyterian Hospital/Weill Cornell Medicine in Manhattan and the surgical ICU at the Brigham and Women's Hospital in Boston. Nurses were interviewed about their perceptions of the patients' quality of death using validated measures. Patients were divided into 3 groups-no DNR, early DNR, late DNR placement during the patient's final ICU stay. Logistic regression analyses modeled perceived patient quality of life as a function of timing of DNR order placement. Patient's comorbidities, length of ICU stay, and procedures were also included in the model.
RESULTS: 59 patients (29.5%) had a DNR placed within 48 hours of ICU admission (early DNR), 110 (55%) placed after 48 hours of ICU admission (late DNR), and 31 (15.5%) had no DNR order placed. Compared to patients without DNR orders, those with an early but not late DNR order placement had significantly fewer non-beneficial procedures and lower odds of being rated by nurses as not being at peace (Adjusted Odds Ratio namely AOR = 0.30; [CI = 0.09-0.94]), and experiencing worst possible death (AOR = 0.31; [CI = 0.1-0.94]) before controlling for procedures; and consistent significance in severe suffering (AOR = 0.34; [CI = 0.12-0.96]), and experiencing a severe loss of dignity (AOR = 0.33; [CI = 0.12-0.94]), controlling for non-beneficial procedures.
CONCLUSIONS: Placement of DNR orders within the first 48 hours of the terminal ICU admission was associated with fewer non-beneficial procedures and less perceived suffering and loss of dignity, lower odds of being not at peace and of having the worst possible death.
OBJECTIVES: Dementia is a progressive incurable life-limiting illness. Previous research suggests end-of-life care for people with dementia should have a symptomatic focus with an effort to avoid burdensome interventions that would not improve quality of life. This study aims to assess the appropriateness of end-of-life care in people who died with dementia in Belgium and to establish relative performance standards by measuring validated population-level quality indicators.
DESIGN: We conducted a retrospective observational study.
SETTING AND PARTICIPANTS: We included all persons deceased with dementia in 2015 in Belgium. Data from 8 administratively collected population-level databases was linked.
MEASURES: We used a validated set of 28 quality indicators for end-of-life dementia care. We compared quality indicator scores across 14 healthcare regions to establish relative benchmarks.
RESULTS: In Belgium in 2015, 10,629 people died with dementia. For indicators of appropriate end-of-life care, people who died with dementia had on average 1.83 contacts with their family physician in the last week before death, whereas 68.4% died at home or in their nursing home of residence. For indicators of inappropriate end-of-life care, 32.4% were admitted to the hospital and 36.3% underwent diagnostic testing in the last 30 days before death, whereas 25.1% died in the hospital. In the last 30 days, emergency department admission varied between 19% and 31%, dispensing of gastric protectors between 18% and 42%, and antihypertensives between 40% and 53% between healthcare regions, with at least 25% of health regions below 46%.
CONCLUSIONS AND IMPLICATIONS: Our study found indications of appropriate as well as inappropriate end-of-life care in people with dementia, including high rates of family physician contact, as well as high percentages of diagnostic testing, and emergency department and hospital admissions. We also found high risk-adjusted variation for multiple quality indicators, indicating opportunity for quality improvement in end-of-life dementia care.
Improving the end of life care experience of people dying in acute care has become a priority for our organization since 2016 with the launch of the "Quality Living and Dying Initiative." This initiative has three distinct foci. The first two areas of focus, advance care planning and standardized comfort measures, are well established while the third focus bereavement program remains in its early stages. Bereavement is recognized as an essential component along the continuum of palliative care. Despite this recognition, bereavement care is often lacking in hospital settings. This paper will describe a telephone bereavement initiative spearheaded by the Spiritual Care Team at our organization.
At some point in their training, most medical students will encounter palliative care during their placements. In the UK nearly half of all deaths happen in hospital and therefore end of life care is a core skill for junior doctors. This article outlines the importance and relevance of palliative care and offers advice on how to use a palliative care placement to optimise the future management of patients who are nearing the end of life.
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Background: Care costs rise towards the end of life. International comparison of service use, costs and care experiences can inform quality and improve access.
Aim: The aim of this study was to compare health and social care costs, quality and their drivers in the last 3 months of life for older adults across countries. Null hypothesis: no difference between countries.
Design: Mortality follow-back survey. Costs were calculated from carers’ reported service use and unit costs.
Setting: Palliative care services in England (London), Ireland (Dublin) and the United States (New York, San Francisco).
Participants: Informal carers of decedents who had received palliative care participated in the study.
Results: A total of 767 questionnaires were returned: 245 in England, 282 in Ireland and 240 in the United States. Mean care costs per person with cancer/non-cancer were US$37,250/US$37,376 (the United States), US$29,065/US$29,411 (Ireland), US$15,347/US$16,631 (England) and differed significantly (F = 25.79/14.27, p < 0.000). Cost distributions differed and were most homogeneous in England. In all countries, hospital care accounted for > 80% of total care costs; community care 6%–16%, palliative care 1%–15%; 10% of decedents used ~30% of total care costs. Being a high-cost user was associated with older age (>80 years), facing financial difficulties and poor experiences of home care, but not with having cancer or multimorbidity. Palliative care services consistently had the highest satisfaction.
Conclusion: Poverty and poor home care drove high costs, suggesting that improving community palliative care may improve care value, especially as palliative care expenditure was low. Major diagnostic variables were not cost drivers. Care costs in the United States were high and highly variable, suggesting that high-cost low-value care may be prevalent.
Aim: The number of cancer patients with dementia has increased markedly in accordance with aging societies. Cancer patients might receive palliative and end-of-life care to maintain their quality of life; however, the impact of dementia on the quality of death is unexamined in this population. Consequently, we explored the impact of dementia on the quality of death among cancer patients.
Methods: Home palliative care staff members completed questionnaires regarding cancer patients’ (n = 508) cognitive status, cancer-related symptoms and quality of death using the good death inventory. Hierarchical regression analyses were carried out for the entire sample and for stratified groups based on the presence of dementia.
Results: Of the 508 patients, 156 (30.7%) had dementia. Hierarchical regression analyses revealed that greater quality of death was associated with not having dementia (P < 0.001). Stratified analyses showed that dying at home was related to greater quality of death both in patients with and without dementia. The presence of a primary family caregiver was associated with greater quality of death only in patients with dementia (P < 0.001).
Conclusions: Cancer patients with dementia were less likely to achieve a good death than those without. Our results suggest the importance of enhancing end-of-life care discussions with patients and their families, along with developing specific support strategies to enhance the decision-making of cancer patients with dementia and their family members.
Over the past decade, substantial progress has been made in building the evidence base for integrating palliative care with cancer care and increasing the availability of palliative care services for patients with cancer. Multiple clinical trials have evaluated proactive care models in which patients begin to receive palliative care services on the basis of an initial diagnosis of advanced cancer or disease progression. The goal of these delivery models is to improve patients’ experiences and outcomes throughout their illness course rather to wait to involve palliative care until they are struggling with uncontrolled symptoms. These studies have demonstrated that earlier and longitudinal involvement of palliative care improves patients’ quality of life, mood, and satisfaction with care. Several studies also have shown that earlier involvement of palliative care enhances the experience of patients’ caregivers and leads to improved communication and delivery of end-of-life care. As these data emerged, ASCO and several other national organizations endorsed the early involvement of palliative care for patients with advanced cancer, which has substantially transformed the practice of palliative care in oncology.
Background: Palliative care is highly relevant for patients with heart failure (HF), and there is a need for quantitative information on quality of care. Accordingly, this study aimed to develop a set of quality indicators (QIs) for palliative care of HF patients, and to conduct a practical pilot measurement of the proposed QIs in clinical practice.
Methods and Results: We used a modified Delphi technique, a consensus method that involves a comprehensive literature review, face-to-face multidisciplinary panel meeting, and anonymous rating in 2 rounds. A 15-member multidisciplinary expert panel individually rated each potential indicator on a scale of 1 (lowest) to 9 (highest) for appropriateness. All indicators receiving a median score =7 without significant disagreement were included in the final set of QIs. Through the consensus-building process, 35 QIs were proposed for palliative care in HF patients. Practical measurement in HF patients (n=131) from 3 teaching hospitals revealed that all of the proposed QIs could be obtained retrospectively from medical records, and the following QIs had low performance (<10%): “Intervention by multidisciplinary team”, “Opioid therapy for patients with refractory dyspnea”, and “Screening for psychological symptoms”.
Conclusions: The first set of QIs for palliative care of HF patients was developed and could clarify quantitative information and might improve the quality of care.
Objective: We still don't know if recurrent major depressive disorder (RMDD) may impact the quality of the end-of-life (EOL) cancer care in France. To tackle this knowledge gap, we explored EOL care in RMDD subjects who died from cancer compared to subjects without psychiatric disorder in a 4-year nationwide cohort study.
Design: Nationwide cohort study.
Setting: National hospital database, France.
Participants: All patients aged =15 years who died from cancer in hospital: 4070 RMDD subjects and 222,477 controls, 2013-2016, France.
Main outcome measures: Palliative care in the last 31 days of life and high-intensity EOL care including chemotherapy in the last 14 days of life, artificial nutrition, tracheal intubation, mechanical ventilation, gastrostomy, cardiopulmonary resuscitation, dialysis, transfusion, surgery, endoscopy, imaging, intensive care unit and emergency department admission in the last 31 days of life. Multivariate generalized mixed models with log-normal distribution was used to compare RMDD subjects and controls.
Results: Compared to the controls, the RMDD subjects died 3 years younger, had more comorbidities, more thoracic cancers, less metastases and longer time from cancer diagnosis to death. After matching and adjustment, subjects with RMDD were found to receive more palliative care and less high-intensity EOL care, had fewer iterative admissions to acute care unit, and died less often in the intensive care unit and emergency department.
Conclusions: RMDD subjects were more likely to receive palliative care associated with less high-intensity EOL care. Yet the interpretation may be discussed, resulting from either patients’/families’ wishes or difficulties for providers in offering personalized care to RMDD.
BACKGROUND: Although compassionate care is considered a cornerstone of quality palliative care, there is a paucity of valid and reliable measures to study, assess, and evaluate how patients experience compassion/compassionate care in their care.
OBJECTIVE: The aim was to develop a patient-reported compassion measure for use in research and clinical practice with established content-related validity evidence for the items, question stems, and response scale.
METHODS: Content validation for an initial 109 items was conducted through a two-round modified Delphi technique, followed by cognitive interviews with patients. A panel of international Subject Matter Experts (SMEs) and a Patient Advisory Group (PAG) assessed the items for their relevancy to their associated domain of compassion, yielding an Item-level Content Validity Index (I-CVI), which was used to determine content modifications. The SMEs and the PAG also provided narrative feedback on the clarity, flow, and wording of the instructions, questions, and response scale, with items being modified accordingly. Cognitive interviews were conducted with 16 patients to further assess the clarity, comprehensibility, and readability of each item within the revised item pool.
RESULTS: The first round of the Delphi review produced an overall CVI of 72% among SMEs and 80% among the PAG for the 109 items. Delphi panelists then reviewed a revised measure containing 84 items, generating an overall CVI of 84% for SMEs and 86% for the PAG. Sixty-eight items underwent further testing via cognitive interviews with patients, resulting in an additional 14 items being removed.
CONCLUSIONS: Having established this initial validity evidence, further testing to assess internal consistency, test-retest reliability, factor structure, and relationships to other variables is required to produce the first valid, reliable, and clinically informed patient-reported measure of compassion.