Importance: Approximately 1 in 4 patients receiving maintenance dialysis for end-stage renal disease eventually stop treatment before death. Little is known about the association of stopping dialysis and quality of end-of-life care.
Objectives: To evaluate the association of stopping dialysis before death with family-rated quality of end-of-life care and whether this association differed according to receipt of hospice services at the time of death.
Design, Setting, and Participants: This survey study included data from 3369 patients who were treated with maintenance dialysis at 111 Department of Veterans Affairs medical centers and died between October 1, 2009, to September 30, 2015. Data set construction and analyses were conducted from September 2017 to July 2019.
Exposure: Cessation of dialysis treatment before death.
Main Outcomes and Measures: Bereaved Family Survey ratings.
Results: Among 3369 patients included, the mean (SD) age at death was 70.6 (10.2) years, and 3320 (98.5%) were male. Overall, 937 patients (27.8%) stopped dialysis before death and 2432 patients (72.2%) continued dialysis treatment until death. Patients who stopped dialysis were more likely to have been receiving hospice services at the time of death than patients who continued dialysis (544 patients [58.1%] vs 430 patients [17.7%]). Overall, 1701 patients (50.5%) had a family member who responded to the Bereaved Family Survey. In adjusted analyses, families were more likely to rate overall quality of end-of-life care as excellent if the patient had stopped dialysis (54.9% vs 45.9%; risk difference, 9.0% [95% CI, 3.3%-14.8%]; P = .002) or continued to receive dialysis but also received hospice services (60.5% vs 40.0%; risk difference, 20.5% [95% CI, 12.2%-28.9%]; P < .001).
Conclusions and Relevance: This survey study found that families rated overall quality of end-of-life care higher for patients who stopped dialysis before death or continued dialysis but received concurrent hospice services. More work to prepare patients for end-of-life decision-making and to expand access to hospice services may help to improve the quality of end-of-life care for patients with end-stage renal disease.
BACKGROUND AND OBJECTIVES: Little is known about the quality of end-of-life care for patients with advanced CKD. We describe the relationship between patterns of end-of-life care and dialysis treatment with family-reported quality of end-of-life care in this population.
DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: We designed a retrospective observational study among a national cohort of 9993 veterans with advanced CKD who died in Department of Veterans Affairs facilities between 2009 and 2015. We used logistic regression to evaluate associations between patterns of end-of-life care and receipt of dialysis (no dialysis, acute dialysis, maintenance dialysis) with family-reported quality of end-of-life care.
RESULTS: Overall, 52% of cohort members spent = 2 weeks in the hospital in the last 90 days of life, 34% received an intensive procedure, and 47% were admitted to the intensive care unit, in the last 30 days, 31% died in the intensive care unit, 38% received a palliative care consultation in the last 90 days, and 36% were receiving hospice services at the time of death. Most (55%) did not receive dialysis, 12% received acute dialysis, and 34% received maintenance dialysis. Patients treated with acute or maintenance dialysis had more intensive patterns of end-of-life care than those not treated with dialysis. After adjustment for patient and facility characteristics, receipt of maintenance (but not acute) dialysis and more intensive patterns of end-of-life care were associated with lower overall family ratings of end-of-life care, whereas receipt of palliative care and hospice services were associated with higher overall ratings. The association between maintenance dialysis and overall quality of care was attenuated after additional adjustment for end-of-life treatment patterns.
CONCLUSIONS: Among patients with advanced CKD, care focused on life extension rather than comfort was associated with lower family ratings of end-of-life care regardless of whether patients had received dialysis.
Many of America's Veterans have unique medical and psychosocial needs related to their military service. Since most medical care received by Veterans occurs outside of the Department of Veterans Affairs (VA) health care system, it is imperative that all medical providers have a working understanding of the unique needs of Veterans and some of the many programs and services available to Veterans through the VA. This article, created by an interdisciplinary team of palliative care and hospice providers who care for Veterans throughout the country, seeks to improve the comfort with which non-VA clinicians care for Veterans while increasing knowledge about programs for which Veterans might qualify through the VA.
BACKGROUND/OBJECTIVES: The Optimizing Patient Transfers, Impacting Medical Quality, Improving Symptoms: Transforming Institutional Care (OPTIMISTIC) project is a successful, multicomponent demonstration project to reduce potentially avoidable hospitalizations of long-stay nursing facility residents. Systematic advance care planning (ACP) is a core component of the intervention, based on research suggesting ACP is associated with decreased hospitalizations of nursing facility residents. The purpose of this study was to describe associations between ACP documentation resulting from the OPTIMISTIC intervention and hospitalizations.
DESIGN: Specially trained project nurses were embedded in 19 nursing facilities and systematically engaged in ACP as part of a larger demonstration project.
PARTICIPANTS: Residents (n = 1482) enrolled in the demonstration project for a minimum of 30 days between January 1, 2015, and June 30, 2016.
MEASUREMENTS: ACP status: (1) Physician Orders for Scope of Treatment (POST) comfort measures or do not hospitalize (DNH) orders; (2) ACP orders with no hospitalization limit (eg, code status only); and (3) no ACP (potentially avoidable and all-cause hospitalizations per 1000 resident days).
RESULTS: Residents with POST comfort measures/DNH orders (33.2% or n = 493) were less likely than residents with no ACP (14.7% or n = 218) to experience a potentially avoidable hospitalization (P = .001) or all-cause hospitalization (P = .001). These differences became statistically nonsignificant after adjusting for age, functional status, and cognitive functioning.
CONCLUSION: In this successful multicomponent demonstration project to reduce potentially avoidable hospitalizations, ACP outcomes were not associated with hospitalization rates of nursing facility residents after adjusting for resident characteristics. These findings highlight the challenge of measuring the contributions of individual components of complex, multicomponent interventions. Associations between lower hospitalization rates and ACP completion may be influenced by contextual factors, such as clinical expertise and resources to manage acute conditions leading to hospitalization, in addition to interventions to increase ACP.
CONTEXT: The Bereaved Family Survey (BFS) is used to evaluate the quality of end-of-life (EOL) care in VA inpatient settings. The BFS consists of a global Performance Measure (BFS-PM) and three factors that relate to specific aspects of EOL care.
OBJECTIVE: The purpose of this study was to identify empirically-based target scores on each BFS factor that are most strongly related to a rating of "excellent" on the BFS-PM.
METHODS: We conducted a cross-sectional analysis of BFS and Veteran clinical data from January 2012 to January 2016. Logistic regression models were constructed for each potential cut-point on the three BFS factors and accounted for facility case-mix and nonresponse bias. Model fit was assessed primarily using the Liu Index, Bayesian Information Criterion (BIC) and classification accuracy values.
RESULTS: Our analytic sample included 40,180 Veterans whose next-of-kin completed a BFS. The mean BFS response rate across study years was 58%. A score of 14 or higher on the Respectful Care and Communication factor (range 0-15) had the lowest BIC (121355) and highest percent correctly classified (81.2%). The Emotional and Spiritual Support factor (range 0-9) had an optimal score of 8 or higher (BIC=133685; % correctly classified=77.1%). An optimal cut-point on the Benefits factor was not identified.
CONCLUSION: The identification of data-driven targets make BFS factor scores more useful to clinicians and administrators focused on improving quality of EOL care in their facilities. Our results lend support for prioritizing quality improvement efforts related to respectful care and communication.
PURPOSE: Several studies have identified differences in end-of-life (EOL) care between urban and rural areas, yet little is known about potential differences in care processes or family evaluations of care. The purpose of this study was to examine the relationship between rurality of residence and quality of EOL care within the Veterans Affairs health care system.
METHODS: This study was a retrospective, cross-sectional analysis of 126,475 veterans who died from October 2009 through September 2016 in inpatient settings across 151 facilities. Using unadjusted and adjusted logistic regression, we compared quality of EOL care between urban and rural veterans using family evaluations of care and 4 quality of care indicators for receipt of (1) palliative care consult, (2) a chaplain visit, (3) death in an inpatient hospice unit, and (4) bereavement support.
FINDINGS: Veterans from rural areas had lower odds of dying in an inpatient hospice unit compared to veterans from urban areas, before and after adjustment (large rural OR 0.73, 95% CI: 0.70-0.77; P < .001, small rural OR 0.81, 95% CI: 0.77-0.86; P < .001, isolated rural OR 0.87, 95% CI: 0.81-0.93; P < .001). Differences in comparisons of other quality of care indicators were small and of mixed significance. No significant differences were found in family ratings of care in fully adjusted models.
CONCLUSION: Receipt of some EOL quality indicators differed with urban-rural residence for some comparisons. However, family ratings of care did not. Our findings call for further investigation into unmeasured individual characteristics and facility processes related to rurality.
PURPOSE: Veterans with advanced cancer can receive hospice care concurrently with treatments such as radiation and chemotherapy. However, variations exist in concurrent care use across Veterans Affairs (VA) medical centers (VAMCs), and overall, concurrent care use is relatively rare. In this qualitative study, we aimed to identify, describe, and explain factors that influence the provision of concurrent cancer care (defined as chemotherapy or radiation treatments provided with hospice) for veterans with terminal cancer.
METHODS: From August 2015 to April 2016, we conducted six site visits and interviewed 76 clinicians and staff at six VA sites and their contracted community hospices, including community hospices (n = 16); VA oncology (n = 25); VA palliative care (n = 17); and VA inpatient hospice and palliative care units (n = 18).
RESULTS: Thematic qualitative content analysis found three themes that influenced the provision of concurrent care: (1) clinicians and staff at community hospices and at VAs viewed concurrent care as a viable care option, as it preserved hope and relationships while patient goals are clarified during transitions to hospice; and (2) the presence of dedicated liaisons facilitated care coordination and education about concurrent care; however, (3) clinicians and staff concerns about Medicare guideline compliance hindered use of concurrent care.
CONCLUSIONS: While concurrent care is used by a small number of veterans with advanced cancer, VA staff valued having the option available and as a bridge to hospice. Hospice staff felt concurrent care improved care coordination with VAMCs, but use may be tempered due to concerns related to Medicare compliance.
OBJECTIVES: To evaluate the predictive validity of an adapted version of the Minimum Data Set (MDS) Mortality Risk Index-Revised (MMRI-R) based on MDS version 3.0 assessment items (MMRI-v3) and to compare the predictive validity of the MMRI-v3 with that of a single MDS item indicating limited life expectancy (LLE).
DESIGN: Retrospective, cross-sectional study of MDS assessments. Other data sources included the Veterans Affairs (VA) Residential History File and Vital Status File.
SETTING: VA nursing homes (NHs).
PARTICIPANTS: Veterans aged 65 and older newly admitted to VA NHs between July 1, 2012, and September 30, 2015.
MEASUREMENTS: The dependent variable was death within 6 months of admission date. Independent variables included MDS items used to calculate MMRI-v3 scores (renal failure, chronic heart failure, sex, age, dehydration, cancer, unintentional weight loss, shortness of breath, activity of daily living scale, poor appetite, acute change in mental status) and the MDS item indicating LLE.
RESULTS: The predictive ability of the MMRI-v3 for 6-month mortality (c-statistic 0.81) is as good as that of the original MMRI-R (c-statistic 0.76). Scores generated using the MMRI-v3 had greater predictive ability than that of the single MDS indicator for LLE (c-statistic 0.76); using the 2 together resulted in greater predictive ability (c-statistic 0.86).
CONCLUSION: The MMRI-v3 is a useful tool in research and clinical practice that accurately predicts 6-month mortality in veterans residing in Veterans Affairs NHs. Identification of residents with LLE has great utility for studying palliative care interventions and may be helpful in guiding allocation of these services in clinical practice.
One barrier to continued growth of palliative care is the shortage of qualified hospice and palliative care clinicians. Advanced practice registered nurses are an important part of the interdisciplinary palliative care team, and strengthening this workforce can help alleviate the shortage of clinicians and improve access to quality palliative care. However, there is a dearth of information about this workforce. The purpose of this study was to describe the current hospice and palliative care advanced practice registered nurse workforce, their educational needs, and barriers to practice. The investigators distributed an online survey between October 2016 and January 2017 and received 556 responses. Sixty-three percent had more than 20 years of experience as a registered nurse yet were newer to practice as a hospice and palliative care advanced practice nurse, with 53.8% having 0 to 5 years of experience in this role. Forty-one percent indicated that their traditional graduate educational preparation was insufficient in preparing them for their specialty role. Most indicated that they did not experience barriers to practice in their current position, but 7.3% identified significant issues. These results can inform future professional, educational, and regulatory efforts to support and develop the palliative care advanced practice registered nurse workforce.
Despite hospital palliative care consultations during which goals of care are discussed in the context of poor prognoses, older adults are admitted to nursing homes (NHs) for post-acute care where the focus is on rehabilitation. The purpose of this qualitative descriptive study was to describe factors that influence discontinuity between a palliative care consult and NH care and explore the potential consequences of this discontinuity. Twelve adults (mean age, 80 years) were enrolled from 1 community hospital and NH in the mid-Atlantic United States. Semistructured interviews and medical record reviews were used to elicit information about clinical course, care processes, and patient/family preferences at hospital discharge and up to 4 times after NH admission. Data were analyzed using inductive content analysis techniques. Analysis revealed 2 themes: inadequate communication, characterized by the lack of information about the palliative care consult after hospital discharge, and prognosis incongruence, evidenced by data demonstrating a discrepancy between hospital prognosis and NH care. Ongoing communication between settings to readdress goals of care, prognosis, and symptoms—the central tenets of palliative care - is lacking. Efforts to improve access to comprehensive palliative care delivery after hospitalization and during NH transitions are greatly needed.
Surveys of bereaved family members are increasingly being used to evaluate end-of-life (EOL) care and to measure organizational performance in EOL care quality. The Bereaved Family Survey (BFS) is used to monitor EOL care quality and benchmark performance in the Veterans Affairs (VA) health-care system. The objective of this study was to develop a case-mix adjustment model for the BFS and to examine changes in facility-level scores following adjustment, in order to provide fair comparisons across facilities. We conducted a cross-sectional secondary analysis of medical record and survey data from veterans and their family members across 146 VA medical centers. Following adjustment using model-based propensity weighting, the mean change in the BFS-Performance Measure score across facilities was -0.6 with a range of -2.6 to 0.6. Fifty-five (38%) facilities changed within ±0.5 percentage points of their unadjusted score. On average, facilities that benefited most from adjustment cared for patients with greater comorbidity burden and were located in urban areas in the Northwest and Midwestern regions of the country. Case-mix adjustment results in minor changes to facility-level BFS scores but allows for fairer comparisons of EOL care quality. Case-mix adjustment of the BFS positions this National Quality Forum-endorsed measure for use in public reporting and internal quality dashboards for VA leadership and may inform the development and refinement of case-mix adjustment models for other surveys of bereaved family members.
CONTEXT: As children with life-limiting and life-threatening illnesses live longer, challenges to meeting their complex health care needs arise in homes and communities, as well as in hospitals. Integrated knowledge regarding community-based pediatric palliative care (CBPPC) is needed to strategically plan for a seamless continuum of care for children and their families.
OBJECTIVE: The purpose of this integrative review paper is to explore factors that are associated with the use of CBPPC for U.S. children with life-limiting and life-threatening illnesses and their families.
METHODS: A literature search of PubMed, CINAHL, Scopus, Google Scholar, as well as an ancestry search, to identify empirical studies and program evaluations published between 2000 and 2016. The methodological protocol included an evaluation of empirical quality and explicit data collection of synthesis procedures.
RESULTS: Forty peer-reviewed quantitative and qualitative methodological interdisciplinary papers were included in the final sample. Patient characteristics such as older age and a solid tumor cancer diagnosis, and interpersonal factors such as family support were associated with higher CBPPC use. Organizational features were the most frequently discussed factors that increased CBPPC, including the importance of inter-professional hospice services and inter-organizational care coordination for supporting the child and family at home. Lastly, geography, concurrent care and hospice eligibility regulations, and funding and reimbursement mechanisms were associated with CBPPC use on a community and systemic level.
CONCLUSION: Multilevel factors are associated with increased CBPPC use for children with life-limiting or life-threatening illnesses and their families in the U.S.
A partir d'une étude de cas qui montre la complexité des éléments déterminants de la place de la mort dans les unités de soins palliatifs, les auteurs soulignent les facteurs connus importants et apportent des réponses pour une recherche future.
La prévision d'une augmentation de population dans les résidences pour personnes âgées aux Etats-Unis pose la nécessité de former les équipes de soins pour une meilleure qualité de fin de vie des patients. L'article présente un de ces programmes de perfectionnement; des tableaux en présentent les modalités et des exemples de documents utilisés. Pour parvenir à sa plus grande diffusion, il a été considéré intéressant de l'enseigner d'abord à des infirmières et cadres de santé pour qu'ils puissent organiser eux-mêmes des formations dans leurs services. En vue de valider cette hypothèse une étude a été effectuée auprès d'un groupe de 87 professionnels de santé qui ont participé à deux jours de présentation et de formation. Les résultats sont complétés par des tableaux sur leurs caractéristiques et les résultats obtenus : organiser des sessions efficaces de perfectionnement en soins de fin de vie, possibilités d'adaptation des modules selon le contexte, formation d'un plus grand nombre de soignants.
L'objectif de cette analyse est de présenter une synthèse éthique sur les questions relatives au suicide assisté et à l'euthanasie. Face à la complexité de ce débat, elle cherche à en étudier les différents aspects: redéfinition des termes et des concepts, rappel sur des facteurs historiques, culturels et sociaux, arguments en faveur ou en opposition, rôle des infirmières, respect face aux choix et aux croyances du patient. Les points principaux de tous ces thème sont repris dans des tableaux récapitulatifs.
Cet article précise les positions de l'association des infirmières d'hospice et de centres palliatifs aux Etats-Unis sur le rôle et les limites des auxillaires infirmiers dans la prise en charge des malades en fin de vie.
Cette revue de la littérature a pour thème la nécessité pour les patients cancéreux de trouver un sens à la douleur. Un tableau résume différentes hypothèses d'auteurs sur ce besoin de comprendre. Un modèle repris dans un schéma est proposé pour aider à patients et proches dans cette voie compréhension et pour permettre aux soignants d'avoir une approche intégrée sur cette question.