Opportunities to Improve End-of-Life Care Quality among Patients with Short Terminal Admissions.

CONTEXT: Little is known about Veterans who die during a short terminal admission, which renders them ineligible for the Department of Veterans Affairs (VA) Bereaved Family Survey. OBJECTIVES: We sought to describe this population and identify opportunities to improve end-of-life (EOL) care quality. METHODS: Retrospective, cohort analysis of Veteran decedents who died in a VA inpatient setting between October 2018-September 2019. Veterans were dichotomized by short (<24 hours) and long (≥24 hours) terminal admissions; sociodemographics, clinical characteristics, VA and non-VA healthcare use, and EOL care quality indicators were compared. RESULTS: Among 17,033 inpatient decedents, 723 (4%) had short terminal admissions. Patients with short compared to long terminal admissions were less likely to have a VA hospitalization (38% vs. 54%) in the last 90 days of life and were more likely to die in an intensive care (49% vs 21%) or acute care (27% vs 18%) unit. Patients with a short compared to long admission were about half as likely to receive hospice (33% vs 64%) or palliative care (33% vs 69%). Most patients with short admissions (76%) had a life-limiting condition (e.g., cancer, chronic obstructive pulmonary disease) and those with cancer were more likely to receive palliative care compared to those with non-cancer conditions. CONCLUSION: Veterans with short terminal admissions are less likely to receive hospice or palliative care compared to patients with long terminal admissions. Many patients with short terminal admissions, such as those with life-limiting conditions (especially cancer), receive aspects of high-quality EOL care, however, opportunities for improvement exist.

Clinical practice review: outpatient palliative care for the geriatric chronic kidney disease population.

With a growing geriatric population in the United States, there is an increased need for healthcare resources and collaborative care for serious illnesses. Patients with chronic illnesses including chronic kidney disease (CKD) often experience severe symptoms and face complex decisions, many of which develop or occur in the outpatient setting. Though many of these symptoms overlap between different chronic illnesses, the CKD population remains largely untapped in terms of access to said resources; until recently, the focus in palliative care has been largely in the oncologic population. Older patients with CKD may benefit from additional tools and resources provided from collaborative care models specifically involving palliative care, especially as this population is high risk for experiencing lack of support. In this review, we use case vignettes to discuss the key concepts and roles of outpatient palliative care and how they can be integrated into the nephrology care of older patients with advanced kidney disease. These highlighted concepts include shared decision-making, selective deprescribing and symptom management, psychosocial support, and advance care planning. We also review different outpatient models for integrative palliative care, and the roles and resources of the palliative multidisciplinary team within these models and how these models can potentially be implemented in the care of CKD patients.

Nephrologists' perspectives and experiences with hospice among older adults with end-stage kidney disease.

BACKGROUND: Hospice care leads to improved patient and family outcomes. Hospice use among older adults with end-stage kidney disease (ESKD) is markedly lower than among older adults with other serious illnesses, and the majority of those with ESKD who use hospice enroll in the last days of life. Here, our aim was to explore barriers to timely receipt of high-quality hospice care for older adults with ESKD. METHODS: Utilizing a qualitative study design, we conducted a secondary analysis focused on hospice, a theme that we identified in our larger overarching study that involved semi-structured interviews with 20 nephrologists in the United States focused on treatment decision-making in older adults with advanced chronic kidney disease. We analyzed the interview transcripts using emergent thematic analysis to develop an understanding of barriers to high-quality hospice. RESULTS: With a couple notable exceptions, nephrologists voiced general support for the concept of hospice, but few recalled patients of theirs who had received hospice. Nephrologists' interviews revealed two interrelated contributors to the lack of timely access to high-quality hospice care for seriously ill older adults with ESKD: (1) nephrologists view dialysis and hospice as mutually exclusive models of care; (2) nephrologists feel unsure who should manage hospice care for patients with ESKD. The first contributor was rooted in nephrologists' narrow vision of when to consider hospice (informed, in part, by policy barriers) and, in a couple of cases, strong discomfort with hospice. The second stemmed from nephrologists' belief that neither they nor hospice are adequately prepared to provide hospice care for ESKD. CONCLUSIONS: Our findings suggest that, in addition to Medicare policy change, nephrologists need to receive more training in primary palliative care skills including in indications for hospice, initiating conversations about hospice with patients, and collaborating with hospice clinicians to care for these vulnerable patients.

A comparison of end-of-life care quality for Veterans receiving hospice in VA nursing homes and community nursing homes.

BACKGROUND: While the Veterans Health Administration (VA) has long provided hospice care within VA community living centers (CLCs, i.e., VA nursing homes), an increasing number of Veterans are receiving hospice in VA-contracted community nursing homes (CNHs). However, little data exist about the quality of end-of-life (EOL) care provided in CNHs. The aim of this study was to compare family ratings of the quality of EOL care provided to Veterans receiving hospice in VA CLCs and VA-contracted CNHs. METHODS: We conducted a retrospective analysis of national data from VA's electronic medical record and Bereaved Family Survey (BFS) for Veterans who received hospice in VA CLCs or VA-contracted CNHs between October 2021 and March 2022. The final sample included 1238 Veterans who died in either a CLC (n = 1012) or a CNH (n = 226) and whose next-of-kin completed the BFS. Our primary outcome was the BFS global rating of care received in the last 30 days of life. Secondary outcomes included BFS items related to symptom management, communication, emotional and spiritual support, and information about burial and survivor benefits. We compared unadjusted and adjusted proportions for all BFS outcomes between those who received hospice in CLCs and CNHs. RESULTS: The adjusted proportion of family members who gave the best possible rating (a score of 9 or 10 out of a possible 10) for the overall care received near EOL was more than 13 percentage points higher for Veterans who received hospice in VA CLCs compared to VA-contracted CNHs. Our findings also revealed quality gaps of even greater magnitude in specific EOL care-focused domains. CONCLUSIONS: Our findings document inadequacies in the quality of multiple aspects of EOL care provided to Veterans in CNH-based hospice and illuminate the urgent need for policy and practice interventions to improve this care.

Breaking the Link Between Enrollment in Hospice and Discontinuation of Dialysis.

This Viewpoint discusses Medicare coverage regarding hospice care for patients receiving dialysis at the end of life.

Association of Hospice Payer With Concurrent Receipt of Hospice and Dialysis Among US Veterans With End-stage Kidney Disease: A Retrospective Analysis of a National Cohort.

Importance: For many patients with end-stage kidney disease (ESKD), the Medicare Hospice Benefit precludes concurrent receipt of hospice and dialysis services, forcing patients to choose between continuing dialysis or enrolling in hospice. Whether the more liberal hospice eligibility criteria of the Veterans Health Administration's (VA) are associated with improved access to concurrent dialysis and hospice care for patients with ESKD is not known. Objective: To examine the frequency of concurrent hospice and dialysis care among US veterans by hospice payer and examine the payer for concurrent dialysis. Design, Setting, and Participants: This was a retrospective cross-sectional study of all 70 577 VA enrollees in the US Renal Data System registry who initiated maintenance dialysis and died in 2007 to 2016. Data were analyzed from April 2021 to August 2022. Exposures: Hospice payer, either Medicare, VA inpatient hospice, or VA-financed community-based hospice ("VA community care"). Primary hospice diagnosis-ESKD vs non-ESKD. Main Outcomes and Measures: Concurrent receipt of hospice and dialysis services ("concurrent care"). Results: There were 18 420 (26%) eligible veterans with ESKD who received hospice services (mean [SD] age, 75.4 [10.0] years; 17 457 [94.8%] men; 2997 [16.3%] Black, 15 162 [82.3%] White, and 261 (1.4%) individuals of other races). Most of the sample (n = 16 465; 89%) received hospice services under Medicare and 5231 (28%) continued to receive dialysis after hospice initiation. The adjusted proportion of veterans receiving concurrent care was higher for those enrolled in VA inpatient hospice or VA community care hospice than it was for those enrolled in Medicare hospice (57% and 41% vs 24%, respectively; both P < .001). Regardless of hospice payer, the majority (87%) of the dialysis treatments after hospice initiation were financed by the VA, including for Medicare beneficiaries who had a hospice diagnosis other than ESKD. Median hospice length of stay was 43 days for veterans who received concurrent dialysis vs 4 days for those who did not. Conclusions and Relevance: In this retrospective cross-sectional study of US veterans with ESKD, a substantially higher proportion of veterans in VA-financed hospice received 1 or more dialysis treatments after hospice initiation than those enrolled in Medicare-financed hospice. Regardless of hospice payer, the VA financed most concurrent dialysis treatments. Hospice users who received concurrent dialysis care had substantially longer hospice lengths of stay than those who did not. These findings suggest that Medicare hospice policy may substantially restrict access to concurrent hospice and dialysis care among veterans with ESKD.

"If You Built It, They Could Come": Opportunities to Expand Access to Palliative Care.

There are growing calls to broaden palliative care access to more populations, diseases, and care settings and to earlier in the disease process; yet, supply of specialty palliative care is not likely to keep pace with demand. This article discusses possible solutions by which to bridge the gap between limited palliative care supply and demand. The proposed solutions include: (1) specialist workforce development; (2) alternate models of care; (3) triaging systems; and (4) telemedicine. Education/training, research, and policy mechanisms could operationalize these solutions. With the solutions in hand, the field may be able to increase the reach, sustainability, and equity of palliative care, thereby improving access and enabling a multitude of positive patient, family, and health care system outcomes.

Thematic Analysis of Hospice Mentions in the Health Records of Veterans with Advanced Kidney Disease.

BACKGROUND: Patients with advanced kidney disease are less likely than many patients with other types of serious illness to enroll in hospice. Little is known about real-world clinical decision-making related to hospice for members of this population. METHODS: We used a text search tool to conduct a thematic analysis of documentation pertaining to hospice in the electronic medical record system of the Department of Veterans Affairs, for a national sample of 1000 patients with advanced kidney disease between 2004 and 2014 who were followed until October 8, 2019. RESULTS: Three dominant themes emerged from our qualitative analysis of the electronic medical records of 340 cohort members with notes containing hospice mentions: (1) hospice and usual care as antithetical care models: clinicians appeared to perceive a sharp demarcation between services that could be provided under hospice versus usual care and were often uncertain about hospice eligibility criteria. This could shape decision-making about hospice and dialysis and made it hard to individualize care; (2) hospice as a last resort: patients often were referred to hospice late in the course of illness and did not so much choose hospice as accept these services after all treatment options had been exhausted; and (3) care complexity: patients' complex care needs at the time of hospice referral could complicate transitions to hospice, stretch the limits of home hospice, and promote continued reliance on the acute care system. CONCLUSIONS: Our findings underscore the need to improve transitions to hospice for patients with advanced kidney disease as they approach the end of life.

Management Options for an Older Adult With Advanced Chronic Kidney Disease and Dementia: Grand Rounds Discussion From Beth Israel Deaconess Medical Center.

About 15% of adults in the United States-37 million persons-have chronic kidney disease (CKD). Chronic kidney disease is divided into 5 groups, ranging from stage 1 to stage 5 CKD, whereas end-stage kidney disease (ESKD) is defined as permanent kidney failure. The treatment options for ESKD are kidney replacement therapy (KRT) and conservative management. The options for KRT include hemodialysis (either in-center or at home), peritoneal dialysis, and kidney transplant. Conservative management, a multidisciplinary model of care for patients with stage 5 CKD who want to avoid dialysis, is guided by patient values, preferences, and goals, with a focus on quality of life and symptom management. In 2015, the Kidney Disease Outcomes Quality Initiative recommended that patients with an estimated glomerular filtration rate below 30 mL/min/1.73 m2 be educated about options for both KRT and conservative management. In 2018, the National Institute for Health and Care Excellence recommended that assessment for KRT or conservative management start at least 1 year before the need for therapy. It also recommended that in choosing a management approach, predicted quality of life, predicted life expectancy, patient preferences, and other patient factors be considered, because little difference in outcomes has been found among options. Here, 2 experts-a nephrologist and a general internist-palliative care physician-reflect on the care of a patient with advanced CKD and mild to moderate dementia. They discuss the management options for patients with advanced CKD, the pros and cons of each method, and how to help a patient choose among the options.

The Quality of End-of-Life Care among ICU versus Ward Decedents.

Rationale: Admissions to ICUs are common during terminal hospitalizations, but little is known about how ICU care affects the end-of-life experience for patients dying in hospitals and their families.Objectives: We measured the association between ICU care during terminal hospitalization and family ratings of end-of-life care for patients who died in 106 Veterans Affairs hospitals from 2010 to 2016.Methods: Patients were divided into four categories: no-ICU care, ICU-only care, mixed care (died outside ICU), and mixed care (died in ICU). Multivariable linear probability models were adjusted for patient and hospital characteristics. Patients receiving mixed care were also analyzed based on percentage of time in ICU.Measurements and Main Results: Of 57,550 decedents, 28,062 (48.8%) had a survey completed by a family member or close contact. In adjusted models, ICU-only care was associated with more frequent optimal ratings than no-ICU care, including overall excellent care (56.6% vs. 48.1%; P < 0.001), care consistent with preferences (78.7% vs. 72.4%; P < 0.001), and having pain controlled (51.3% vs. 46.7%; P < 0.001). Among patients with mixed care, increasing ICU time was associated with higher ratings on these same measures (all P < 0.001 for comparisons of those spending >75% time in ICU vs. ≤25% time).Conclusions: Among hospital decedents, ICU care was associated with higher family ratings of quality of end-of-life care than ward care. Reducing ICU use among hospital decedents may not improve end-of-life quality, and efforts to understand how ICU care improves end-of-life quality could help provide better care outside ICUs.

Palliative Care and End-of-Life Outcomes Following High-risk Surgery.

Importance: Palliative care has the potential to improve care for patients and families undergoing high-risk surgery. Objective: To characterize the use of perioperative palliative care and its association with family-reported end-of-life experiences of patients who died within 90 days of a high-risk surgical operation. Design, Setting, and Participants: This secondary analysis of administrative data from a retrospective cross-sectional patient cohort was conducted in the Department of Veterans Affairs (VA) Healthcare System. Patients who underwent any of 227 high-risk operations between January 1, 2012, and December 31, 2015, were included. Exposures: Palliative-care consultation within 30 days before or 90 days after surgery. Main Outcomes and Measures: The outcomes were family-reported ratings of overall care, communication, and support in the patient's last month of life. The VA surveyed all families of inpatient decedents using the Bereaved Family Survey, a valid and reliable tool that measures patient and family-centered end-of-life outcomes. Results: A total of 95 204 patients underwent high-risk operations in 129 inpatient VA Medical Centers. Most patients were 65 years or older (69 278 [72.8%]), and the most common procedures were cardiothoracic (31 157 [32.7%]) or vascular (23 517 [24.7%]). The 90-day mortality rate was 6.0% (5740 patients) and varied by surgical subspecialty (ranging from 278 of 7226 [3.8%] in urologic surgery to 875 of 6223 patients [14.1%] in neurosurgery). A multivariate mixed model revealed that families of decedents who received palliative care were 47% more likely to rate overall care in the last month of life as excellent than those who did not (odds ratio [OR], 1.47 [95% CI, 1.14-1.88]; P = .007), after adjusting for patient's characteristics, surgical subspecialty of the high-risk operation, and survey nonresponse. Similarly, families of decedents who received palliative care were more likely to rate end-of-life communication (OR, 1.43 [95% CI, 1.09-1.87]; P = .004) and support (OR, 1.31 [95% CI, 1.01-1.71]; P = .05) components of medical care as excellent. Of the entire cohort, 3374 patients (3.75%) had a palliative care consultation, and 770 patients (0.8%) received it before surgery. Of all decedents, 1632 (29.9%) had a palliative care consultation, with 319 (5.6%) receiving it before surgery. Conclusions and Relevance: Receipt of a palliative consultation was associated with better ratings of overall end-of-life care, communication, and support, as reported by families of patients who died within 90 days of high-risk surgery. Yet only one-third of decedents was exposed to palliative care. Expanding integration of perioperative palliative care may benefit patients undergoing high-risk operations and their families.

Nephrologists' emotional burden regarding decision-making about dialysis initiation in older adults: a qualitative study.

BACKGROUND: Conservative management, an approach to treating end-stage kidney disease without dialysis, while generally associated with shorter life expectancy than treatment with dialysis, is associated with fewer hospitalizations, better functional status and, potentially, better quality of life. Conservative management is a well-established treatment approach in a number of Western countries, including the United Kingdom (U.K.). In contrast, despite clinical practice guidelines in the United States (U.S.) recommending that nephrologists discuss all treatment options, including conservative management, with stage 4 and 5 chronic kidney disease patients, studies suggest that this rarely occurs. Therefore, we explored U.S. nephrologists' approaches to decision-making about dialysis and perspectives on conservative management among older adults. METHODS: We conducted a qualitative research study. We interviewed 20 nephrologists - 15 from academic centers and 5 from community practices - utilizing a semi-structured interview guide containing open-ended questions. Interview transcripts were analyzed using grounded thematic analysis in which codes were generated inductively and iteratively modified, and themes were identified. Transcripts were coded independently by two investigators, and interviews were conducted until thematic saturation. RESULTS: Twenty nephrologists (85% white, 75% male, mean age 50) participated in interviews. We found that decision-making about dialysis initiation in older adults can create emotional burden for nephrologists. We identified four themes that reflected factors that contribute to this emotional burden including nephrologists' perspectives that: 1) uncertainty exists about how a patient will do on dialysis, 2) the alternative to dialysis is death, 3) confronting death is difficult, and 4) patients do not regret initiating dialysis. Three themes revealed different decision-making strategies that nephrologists use to reduce this emotional burden: 1) convincing patients to "just do it" (i.e. dialysis), 2) shifting the decision-making responsibility to patients, and 3) utilizing time-limited trials of dialysis. CONCLUSIONS: A decision not to start dialysis and instead pursue conservative management can be emotionally burdensome for nephrologists for a number of reasons including clinical uncertainty about prognosis on dialysis and discomfort with death. Nephrologists' attempts to reduce this burden may be reflected in different decision-making styles - paternalistic, informed, and shared decision-making. Shared decision-making may relieve some of the emotional burden while preserving patient-centered care.

Association of Family Ratings of Quality of End-of-Life Care With Stopping Dialysis Treatment and Receipt of Hospice Services.

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.

Family Perceptions of Quality of End-of-Life Care for Veterans with Advanced CKD.

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.