Despite significant advances in heart failure (HF) treatment, HF remains a progressive, extremely symptomatic, and terminal disease with a median survival of 2.1 years after diagnosis. HF often leads to a constellation of symptoms, including dyspnea, fatigue, depression, anxiety, insomnia, pain, and worsened cognitive function. Palliative care is an approach that improves the quality of life of patients and their caregivers facing the problems associated with life-threatening illness and therefore is well suited to support these patients. However, historically, palliative care has often focused on supporting patients with malignant disease, rather than a progressive chronic disease such as HF. Predicting mortality in patients with HF is challenging. The lack of obvious transition points in disease progression also raises challenges to primary care providers and specialists to know at what point to integrate palliative care during a patient's disease trajectory.
Although therapies for HF often result in functional and symptomatic improvements including health-related quality of life (HRQL), some patients with HF do not demonstrate these benefits, including those patients with a preserved ejection fraction. Provision of palliative care for patients with HF requires an understanding of HF pathogenesis and common medications used for these patients, as well as an approach to balancing life-prolonging and HRQL care strategies. This review describes HF and current targeted therapies and their effects on symptoms, hospital admission rates, exercise performance, HRQL, and survival. Pharmacological interactions with and precautions related to commonly used palliative care medications are reviewed. The goal of this review is to equip palliative care clinicians with information to make evidence-based decisions while managing the balance between optimal disease management and patient quality of life.
Context: Patients with significant burn injuries likely have palliative care needs.
Objectives: We performed a systematic review of existing evidence concerning the palliative care needs of burn patients.
Methods: Through November 26, 2018, we systematically searched PubMed, CINAHL, Embase, Web of Science, and Scopus, using terms representing burn injuries and the eight domains of quality palliative care as outlined by the National Consensus Project for Quality Palliative Care. Eligible articles involved burn-injured patients treated with an intervention targeting at least one of the eight domains.
Results: Our searches yielded 7532 unique records, which led to 238 articles for full review and 88 studies that met inclusion criteria. Seventy-five studies addressed the domain physical aspects of care and merit a separate systematic review; 13 studies were included in our final review. Four of the seven domains—processes of care, psychologic symptoms, social aspects, and end of life—were addressed by studies but three domains—spiritual, cultural, or ethics—were unaddressed. Included studies highlight potential benefits from peridischarge self-care education programs, peer support, and group therapy in improving quality of life. In patients with severe injuries, end-of-life decision-making protocols were associated with increased utilization of comfort-focused treatments.
Conclusion: Most existing palliative care-related research in burn patients addresses interventions for physical symptoms with minimal literature concerning other domains. Opportunities exist for further research of palliative care in burn populations with emphasis on addressing interventions for all domains and better standardizing the language and outcomes for the palliative care interventions.
Background: A multilevel quality improvement program was implemented at an urban community hospital, serving a racially and ethnically pluralistic patient population, to increase participation in advance care planning (ACP).
Measures: Number of eligible patients who completed an ACP form.
Intervention: Projects were implemented over the course of two years that targeted patients, health care providers, the organization, and the community.
Outcomes: The intervention resulted in increased completion of four unique ACP forms. Completion of the Living Will increased by 60%, Health Care Proxy increased by 9%, Medical Orders for Life-Sustaining Treatment increased by 5%, and Do-Not-Resuscitate/Do-Not-Intubate orders increased by 3%.
Conclusion: Multilevel interventions can increase ACP participation in a racially and ethnically pluralistic patient population.
Context: High-quality advance care planning (ACP) discussions are important to ensure patient receipt of goal-concordant care; however, there is no existing tool for assessing ACP communication quality.
Objectives: The objective of this study was to develop and validate a novel instrument that can be used to assess ACP communication skills of clinicians and trainees.
Methods: We developed a 20-item ACP Communication Assessment Tool (ACP-CAT) plus two summative items. Randomized rater pairs assessed residents' performances in video-recorded standardized patient encounters before and after an ACP training program using the ACP-CAT. We tested the tool for its 1) discriminating ability, 2) interrater reliability, 3) concurrent validity, 4) feasibility, and 5) raters' satisfaction.
Results: Fifty-eight pre/post-training video recordings from 29 first-year internal medicine residents at Mount Sinai Hospital were evaluated. ACP-CAT reliably discriminated performance before and after training (median score 6 vs. 11, P < 0.001). For both pre/post-training encounters, interrater reliability was high for ACP-CAT total scores (intraclass correlation coefficient or ICC = 0.83 and 0.82) and the summative items Overall impression of ACP communication skills (ICC = 0.73 and 0.80) and Overall ability to respond to emotion (ICC = 0.83 and 0.82). Concurrent validity was shown by the strong correlation between ACP-CAT total score and both summative items. Raters spent an average of 4.8 minutes to complete the ACP-CAT, found it feasible, and were satisfied with its use.
Conclusion: ACP-CAT provides a validated measure of ACP communication quality for assessing video-recorded encounters and can be further studied for its applicability with clinicians in different clinical contexts.
OBJECTIVE: Quality end-of-life (EOL) care is critical for dying residents and their family/friend caregivers. While best practices to support resident comfort at EOL in long-term care (LTC) homes are emerging, research rarely explores if and how the type of care received at EOL may contribute to caregivers' perceptions of a good death. To address this gap, this study explored how care practices at EOL contributed to caregivers' perceptions of a good resident death.
METHOD: This study used a retrospective cross-sectional survey design. Seventy-eight participants whose relative or friend died in one of five LTC homes in Canada completed self-administered questionnaires on their perceptions of EOL care and perceptions of a good resident death.
RESULTS: Overall, caregivers reported positive experiences with EOL care and perceived residents to have died a good death. However, communication regarding what to expect in the final days of life and attention to spiritual issues were often missing components of care. Further, when explored alongside direct resident care, family support, and rooming conditions, staff communication was the only aspect of EOL care significantly associated with caregivers' perceptions of a good resident death.
SIGNIFICANCE OF RESULTS: The findings of this study suggest that the critical role staff in LTC play in supporting caregivers' perceptions of a good resident death. By keeping caregivers informed about expectations at the very end of life, staff can enhance caregivers' perceptions of a good resident death. Further, by addressing spiritual issues staff may improve caregivers' perceptions that residents were at peace when they died.
Objectives: Facilitating a high quality of death is an important aspect of comfort care for patients in ICUs. The quality of death in ICUs has been rarely reported in Asian countries. Although Korea is currently in the early stage after the implementation of the “well-dying” law, this seems to have a considerable effect on practice. In this study, we aimed to understand the status of quality of death in Korean ICUs as perceived by medical staff, and to elucidate factors affecting patient quality of death.
Design: A multicenter cross-sectional survey study.
Setting: Medical ICUs of two tertiary-care teaching hospitals and two secondary-care hospitals.
Patients: Deceased patients from June 2016 to May 2017.
Interventions: Relevant medical staff were asked to complete a translated Quality of Dying and Death questionnaire within 48 hours after a patient’s death. A higher Quality of Dying and Death score (ranged from 0 to 100) corresponded to a better quality of death.
Measurements and Main Results: A total of 416 completed questionnaires were obtained from 177 medical staff (66 doctors and 111 nurses) of 255 patients. All 20 items of the Quality of Dying and Death received low scores. Quality of death perceived by nurses was better than that perceived by doctors (33.1 ± 18.4 vs 29.7 ± 15.3; p = 0.042). Performing cardiopulmonary resuscitation and using inotropes within 24 hours before death were associated with poorer quality of death, whereas using analgesics was associated with better quality of death.
Conclusions: The quality of death of patients in Korean ICUs was considerably poorer than reported in other countries. Provision of appropriate comfort care, avoidance of unnecessary life-sustaining care, and permission for more frequent visits from patients’ families may correspond to better quality of death in Korean medical ICUs. It is also expected that the new legislation would positively affect the quality of death in Korean ICUs.
Background: End-of-life (EOL) quality markers in adult oncology include home death and intensive care unit avoidance. Corresponding markers are lacking in pediatric oncology. This study was aimed at describing bereaved parents' perspectives of high-quality EOL care in pediatric oncology.
Methods: this study enrolled a convenience sample of 28 bereaved parents (English- or Spanish-speaking) whose children (0-21 years old) had died of cancer =6 months before. Semistructured interviews were conducted to elicit parental perceptions of medically intense/quality EOL care. Interviews were recorded and transcribed verbatim (30 hours), and study team consensus and content analyses identified themes related to EOL quality markers. Related quotes were scored on a 5-point Likert scale ranging from 1 (supported comfort care) to 5 (supported medically aggressive care).
Results: The children died in 1998-2017 at a mean age of 10 years (SD, 5.2 years); 50% had a solid tumor, and 46% were Spanish-speaking. Themes included 1) home death preference (unless home support was inadequate; median score, 1.6), nonaggressive care (median score, 2.4), and continued anticancer therapy (median score, 3.2); 2) programs/policies that could alleviate barriers limiting a family's time with a dying child (visiting restrictions and financial strains); 3) the need to prepare the family for death (eg, what would happen to the child's body), and 4) perceived abandonment.
Conclusions: This is the first qualitative study to identify quality makers for children dying of cancer from bereaved parents' perspectives. Natural death is generally preferred, and quality measures that address barriers to parents' spending time with their children, a lack of preparation for the events surrounding death, and feelings of abandonment are critical. Future studies need to validate these findings and develop targeted interventions.
PURPOSE: Providing high-quality care for the dying is essential in palliative care. Quality of care can be checked, compared, and improved by assessing responses from bereaved next-of-kin. The objectives of this study are to examine quality of care in the last 2 days of life of hospitalized patients considering specific aspects of their place of care.
METHODS: The "Care of the Dying Evaluation" (CODE™) questionnaire, validated in German in 2018 (CODE-GER), examines quality of care for the patient and support of next-of-kin, allocating values between 0 (low quality) and 4 (high quality). The total score (0-104) is divided into subscales which indicate support/time given by doctors/nurses, spiritual/emotional support, information/decision-making, environment, information about the dying process, symptoms, and support at the actual time of death/afterwards. Next-of-kin of patients with an expected death in specialized palliative care units and other wards in two university hospitals between April 2016 and March 2017 were included.
RESULTS: Most of the 237 analyzed CODE-GER questionnaires were completed by the patient's spouse (42.6%) or children (40.5%) and 64.1% were female. Patients stayed in hospital for an average of 13.7 days (3-276; SD 21.1). Half of the patients died in a specialized palliative care unit (50.6%). The CODE-GER total score was 85.7 (SD 14.17; 25-104). Subscales were rated significantly better for palliative care units than for other wards. Unsatisfying outcomes were reported in both groups in the subscales for information/decision-making and information about the dying process.
CONCLUSION: The overall quality of care for the dying was rated to be good. Improvements of information about the dying process and decision-making are needed.
BACKGROUND: Patients at their end-of-life (EOL) phase frequently visit the emergency department (ED) due to their symptoms, yet the environment and physicians in ED are not traditionally equipped or trained to provide palliative care. This multicentre study aims to measure the current quality of EOL care in ED to identify gaps, formulate improvements and implement the improved EOL care protocol. We shall also evaluate healthcare resource utilisation and its associated costs.
METHODS AND ANALYSIS: This study employs a quasiexperimental interrupted time series design using both qualitative and quantitative methods, involving the EDs of three tertiary hospitals in Singapore, over a period of 3 years. There are five phases in this study: (1) retrospective chart reviews of patients who died within 5 days of ED attendance; (2) pilot phase to validate the CODE questionnaire in the local context; (3) preimplementation phase; (4) focus group discussions (FGDs); and (5) postimplementation phase. In the prospective cohort, patients who are actively dying or have high likelihood of mortality this admission, and whose goal of care is palliation, will be eligible for inclusion. At least 140 patients will be recruited for each preimplementation and postimplementation phase. There will be face-to-face interviews with patients' family members, review of medical records and self-administered staff survey to evaluate existing knowledge and confidence. The FGDs will involve hospital and community healthcare providers. Data obtained from the retrospective cohort, preimplementation phase and FGDs will be used to guide prospective improvement and protocol changes. Patient, family and staff relevant outcomes from these changes will be measured using time series regression.
ETHICS AND DISSEMINATION: The study protocol has been reviewed and ethics approval obtained from the National Healthcare Group Domain Specific Review Board, Singapore. The results from this study will be actively disseminated through manuscript publications and conference presentations.
Objective: To examine perceptions of facilitators and barriers to quality measurement and improvement in palliative care programs and differences by professional and leadership roles.
Methods: We surveyed team members in diverse US and Canadian palliative care programs using a validated survey addressing teamwork and communication and constructs for educational support and training, leadership, infrastructure, and prioritization for quality measurement and improvement. We defined key facilitators as constructs rated =4 (agree) and key barriers as those =3 (disagree) on 1 to 5 scales. We conducted multivariable linear regressions for associations between key facilitators and barriers and (1) professional and (2) leadership roles, controlling for key program and respondent factors and clustering by program.
Results: We surveyed 103 respondents in 11 programs; 45.6% were physicians and 50% had leadership roles. Key facilitators across sites included teamwork, communication, the implementation climate (or environment), and program focus on quality improvement. Key barriers included educational support and incentives, particularly for quality measurement, and quality improvement infrastructure such as strategies, systems, and skilled staff. In multivariable analyses, perceptions did not differ by leadership role, but physicians and nurse practitioners/nurses/physician assistants rated most constructs statistically significantly more negatively than other team members, especially for quality improvement (6 of the 7 key constructs).
Conclusions: Although participants rated quality improvement focus and environment highly, key barriers included lack of infrastructure, especially for quality measurement. Building on these facilitators and measuring and addressing these barriers might help programs enhance palliative care quality initiatives’ acceptability, particularly for physicians and nurses.
All healthcare services strive to achieve the six factors of quality health care - safe, effective, patient-centered, timely, efficient and equitable. Yet multiple structural, process, policy and people factors can combine to result in medical error and patient harm. Measuring the quality of palliative care has many challenges due to its presence across multiple health sectors, variable skill and experience of providers and lack of defined processes for providing services. In Canada there is screening for symptoms and distress in most cancer centers, but not in non-cancer diseases. Screening for distress and disease burden can identify suffering, that when properly addressed, improves quality of life and reduces depression and hopelessness that can lead to requests for hastened death. Our hypothesis is that some requests for hastened death (known as Medical Assistance in Dying or MAiD in Canada) are driven by lack of access to palliative care or lack of quality in the palliative care attempting to address disease burden and distress such that the resulting provision of hastened death is a medical error. The root cause of the error is in the lack of quality palliative care in the previous weeks, months and years of the disease trajectory - a known therapy that the system fails to provide. The evidence for palliative care addressing symptoms and improving quality of life and mood as well as providing caregiver support is established. Early evidence supporting the use of psychotherapeutics in emotional and existential distress is also considered. We present three cases of request for assisted death that could be considered medical error. The paper references preliminary evidence from a review of previous access to palliative care in a limited number of MAiD cases showing that only a minority were identified as having palliative care needs prior to the admission where MAiD was provided. The evidence linking disease burden to hopelessness, depression and hastened death is provided. The many studies revealing the inequity or underservicing of the Canadian population with regards to palliative care are reviewed. We examine a recent framework for palliative care in Canada and point out the need for more aggressive use of standards, process and policies to ensure that Canadians are receiving quality palliative care and that it is equitably accessible to all.
Providing quality end-of-life care for older peopleis one of our biggest challenges in this newCOVID-19 era. Advanced age, because of its asso-ciation with a range of physical comorbidities, is associated with greater mortality with COVID-19. Specifically, case fatality rates in the 70+age group range from 8.6% to 13.4% compared with 0.0026–0.3% in those under 45 (Ruan,2020;Zhouet al.,2020). However, vulnerability is not con-ferred by physiological factors alone, but addition-ally by psychosocial factors such as ageism and ethical considerations such as distributive justice (Stirling,2020;Truoget al.,2020). Those who are at high risk for COVID-19 are the same patients we take care of in geriatric psychiatry, geriatrics,nursing home, hospice, and palliative care, that is,older, ill, frail, cognitively impaired, at high risk of delirium with mental and physical comorbidities (van den Brinket al.,2017). An acute COVID infection may be, as Ballentine (2020) suggested,“what collapses the house of cards” for our vulnerable patients.
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.
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.
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.