Association Between Intensity and Timing of Specialty Palliative Care and Hospice Exposure With Quality of End-of-Life Care.

Background: Gaps remain in our understanding of the intensity and timing of specialty palliative care (SPC) exposure on end-of-life (EOL) outcomes. Objective: Examine the association between intensity and timing of SPC and hospice (HO) exposure on EOL care outcomes. Design, Settings, Participants: Data for this cohort study were drawn from 2021 adult decedents from Kaiser Permanente Southern California and Colorado (n = 26,251). Caregivers of a decedent subgroup completed a postdeath care experience survey from July to August 2022 (n = 424). Measurements: SPC intensity (inpatient, outpatient, and home-based) and HO exposure in the five years before death were categorized as: (1) No SPC or HO; (2) SPC-only; (3) HO-only; and (4) SPC-HO. Timing of SPC exposure (<90 or 90+ days) before death was stratified by HO enrollment. Death in the hospital and potentially burdensome treatments in the last 14 days of life were extracted from electronic medical records (EMRs) and claims. EOL care experience was obtained from the caregiver survey. Results: Among the EMR cohort, exposure to SPC and HO were: No SPC or HO (38%), SPC-only (14%; of whom, 55% received inpatient SPC only), HO-only (20%), and SPC-HO (28%). For decedents who did not enroll in HO, exposure to SPC 90+ days versus <90 days before death was associated with lower risk of receiving potentially burdensome treatments (adjusted relative risk, aRR: 0.69 [95% confidence interval, CI: 0.62-0.76], p < 0.001) and 23% lower risk of dying in the hospital (aRR: 0.77 [95% CI: 0.73-0.81], p < 0.001). Caregivers of patients in the HO-only (aRR: 1.27 [95% CI: 0.98-1.63], p = 0.07) and SPC-HO cohorts (aRR: 1.19 [95% CI: 0.93-1.52], p = 0.18) tended to report more positive care experience compared to the no SPC or HO cohort. Conclusion: Earlier exposure to SPC was important in reducing potentially burdensome treatments and death in the hospital for decedents who did not enroll in HO. Increasing availability and access to community-based SPC is needed.

Effects of early exposure to palliative care on end-of-life outcomes in patients with cancer in a community setting.

OBJECTIVE: Although prior studies show that exposure to early outpatient palliative care (OPC) versus no exposure is associated with improved outcomes at the end of life (EoL) for patients with cancer, few examined the impact of exposure to OPC prior to home-based palliative care (HBPC) on EoL outcomes. This study compares the effect of OPC prior to HBPC versus HBPC alone on EoL outcomes in patients with cancer. METHODS: A secondary analysis of data from a trial comparing two models of HBPC was performed on patients with primary cancer diagnoses. Adjusted negative binomial and logistic regression models were used to compare days in acute care and intensive care unit stays in the last 30 days, chemotherapy administration in the last 14 days and in-hospital deaths between patients who received standard-dose (4+ encounters) and low-dose (<4 encounters) OPC plus HBPC versus HBPC alone. RESULTS: A total of 1187 patients, 483 (40.1%) of whom had OPC+HBPC and 704 (59.3%) who had HBPC alone were included in the analyses. Compared with patients who had HBPC alone, patients who had standard-dose OPC spent fewer days in acute care (4.29 vs 4.19, p=0.04) and fewer days inpatient (3.45 vs 3.09, p=0.03) in the last 30 days of life. No difference was seen in EoL outcomes in patients exposed to low-dose OPC compared with those with HBPC alone. Receipt of hospice after HBPC was strongly associated with improved EoL outcomes. CONCLUSION: Future research is needed to examine the modality, timing and intensity of palliative care necessary to effect EoL outcomes.

Evolving Advance Care Planning in a Health Ecosystem: The Kaiser Permanente Experience.

BACKGROUND: Advance care planning is an integral part of supporting patients through serious illness and end-of-life care. PROBLEM: Several components of advance care planning may be too inflexible to account for patients' changing disease and evolving goals as serious illness progresses. Health systems are starting to implement processes to address these barriers, though implementation has varied. PROPOSED SOLUTION: In 2017, Kaiser Permanente introduced Life Care Planning (LCP), incorporating advance care planning dynamically into concurrent disease management. LCP provides a framework for identifying surrogates, documenting goals, and eliciting patient values across disease progression. LCP provides standardized training to facilitate communication and utilizes a centralized section within the electronic health record for longitudinal documentation of goals. OUTCOMES: More than 6000 physicians, nurses, and social workers have been trained in LCP. Over one million patients have engaged in LCP since its inception, with over 52% of patients age 55+ having a surrogate designated. There is evidence of high treatment concordance with patients' desired wishes (88.9%), with high rates of advance directive completion as well (84.1%).

Dementia diagnosis and utilization patterns in a racially diverse population within an integrated health care delivery system.

Introduction: In an effort to identify improvement opportunities for earlier dementia detection and care within a large, integrated health care system serving diverse Medicare Advantage (MA) beneficiaries, we examined where, when, and by whom Alzheimer's disease and related dementias (ADRD) diagnoses are recorded as well as downstream health care utilization and life care planning. Methods: Patients 65 years and older, continuously enrolled in the Kaiser Foundation health plan for at least 2 years, and with a first ADRD diagnosis between January 1, 2015, and December 31, 2018, comprised the incident cohort. Electronic health record data were used to identify site and source of the initial diagnosis (clinic vs hospital-based, provider type), health care utilization in the year before and after diagnosis, and end-of-life care. Results: ADRD prevalence was 5.5%. A total of 25,278 individuals had an incident ADRD code (rate: 1.2%) over the study period-nearly half during a hospital-based encounter. Hospital-diagnosed patients had higher comorbidities, acute care use before and after diagnosis, and 1-year mortality than clinic-diagnosed individuals (36% vs 11%). Many decedents (58%-72%) received palliative care or hospice. Of the 55% diagnosed as outpatients, nearly two-thirds were diagnosed by dementia specialists; when used, standardized cognitive assessments indicated moderate stage ADRD. Despite increases in advance care planning and visits to dementia specialists in the year after diagnosis, acute care use also increased for both clinic- and hospital-diagnosed cohorts. Discussion: Similar to other MA plans, ADRD is under-diagnosed in this health system, compared to traditional Medicare, and diagnosed well beyond the early stages, when opportunities to improve overall outcomes are presumed to be better. Dementia specialists function primarily as consultants whose care does not appear to mitigate acute care use. Strategic targets for ADRD care improvement could focus on generating pragmatic evidence on the value of proactive detection and tracking, care planning, and the role of specialists in chronic care management.

Hospital utilisation in home palliative care: caregiver health, preparedness and burden associations.

BACKGROUND: Prior studies show that family caregiver factors influence patient outcomes. The purpose of this analysis was to determine the association between family caregiver self-rated health, perception of preparedness and burden at the time of patient admission to home palliative care (HomePal) with downstream patient hospital utilisation and time to hospice enrolment and death. METHODS: Data for this cohort study (n=441) were drawn from a trial testing two models of HomePal. Caregiver self-rated health, preparedness (Preparedness for Caregiving Scale, CPS) and burden (Zarit-12) were measured at admission to HomePal. Caregivers were categorised as having good/very good/excellent or fair/poor health, scoring above or below the CPS median score (23), or having no/mild (0-10), moderate (11-20) or high (>20) burden. Proportional hazard competing risk models assessed the association between caregiver factors with hospital utilisation (emergency department visits, observation and inpatient stays). RESULTS: Patients whose caregivers reported poor health and low preparedness received more visits by home health aides and social workers, respectively (both, p<0.05). Adjusted models showed that worse caregiver health (HR: 0.69 (95% CI 0.52 to 0.92), p=0.01), low preparedness (HR: 0.73 (95% CI 0.57 to 0.94), p=0.01) and high burden (HR: 0.77 (95% CI 0.56 to 1.06), p=0.10) were associated with lower risk for hospital utilisation. There were no significant associations between caregiver factors with time to patient enrolment in hospice or death in adjusted models (both, p>0.05). CONCLUSION: Prospective studies are needed to understand how greater in-home supports for family caregivers with poor health could help achieve quality palliative care that aligns with families' priorities. TRIAL REGISTRATION NUMBER: NCT03694431; ClinicalTrials.gov.

Association Between Financial Distress with Patient and Caregiver Outcomes in Home-Based Palliative Care: A Secondary Analysis of a Clinical Trial.

BACKGROUND: Serious illness often causes financial hardship for patients and families. Home-based palliative care (HBPC) may partly address this. OBJECTIVE: Describe the prevalence and characteristics of patients and family caregivers with high financial distress at HBPC admission and examine the relationship between financial distress and patient and caregiver outcomes. DESIGN, SETTINGS, AND PARTICIPANTS: Data for this cohort study were drawn from a pragmatic comparative-effectiveness trial testing two models of HBPC in Kaiser Permanente. We included 779 patients and 438 caregivers from January 2019 to January 2020. MEASUREMENTS: Financial distress at admission to HBPC was measured using a global question (0-10-point scale: none=0; mild=1-5; moderate/severe=6+). Patient- (Edmonton Symptom Assessment Scale, distress thermometer, PROMIS-10) and caregiver (Preparedness for Caregiving, Zarit-12 Burden, PROMIS-10)-reported outcomes were measured at baseline and 1 month. Hospital utilization was captured using electronic medical records and claims. Mixed-effects adjusted models assessed survey measures and a proportional hazard competing risk model assessed hospital utilization. RESULTS: Half of the patients reported some level of financial distress with younger patients more likely to have moderate/severe financial distress. Patients with moderate/severe financial distress at HBPC admission reported worse symptoms, general distress, and quality of life (QoL), and caregivers reported worse preparedness, burden, and QoL (all, p<.001). Compared to patients with no financial distress, moderate/severe financial distress patients had more social work contacts, improved symptom burden at 1 month (ESAS total score: -4.39; 95% CI: -7.61, -1.17; p<.01), and no increase in hospital-based utilization (adjusted hazard ratio: 1.11; 95% CI: 0.87-1.40; p=.41); their caregivers had improved PROMIS-10 mental scores (+2.68; 95% CI: 0.20, 5.16; p=.03). No other group differences were evident in the caregiver preparedness, burden, and physical QoL change scores. CONCLUSION: These findings highlight the importance and need for routine assessments of financial distress and for provision of social supports required to help families receiving palliative care services.

Assessing the concurrent validity of days alive and at home metric.

BACKGROUND: Most patients living with serious illness value spending time at home. Emerging data suggest that days alive and at home (DAH) may be a useful metric, however more research is needed. We aimed to assess the concurrent validity of DAH with respect to clinically significant changes in patient- and caregiver-reported outcomes (PROs). METHODS: We drew data from a study that compared two models of home-based palliative care among seriously ill patients and their caregivers in two Kaiser Permanente regions (Southern California and Northwest). We included participants aged 18 years or older (n = 3533) and corresponding caregivers (n = 463). We categorized patients and caregivers into three groups based on whether symptom burden (Edmonton Symptom Assessment System, ESAS) or caregiving preparedness (Preparedness for Caregiving Scale, CPS) showed improvements, deterioration, or no change from baseline to 1 month later. We measured DAH across four time windows: 30, 60, 90, and 180 days, after admission to home palliative care. We used two-way ANOVA to compare DAH across the PRO groups. RESULTS: Adjusted pairwise comparisons showed that DAH was highest for patients whose ESAS scores improved or did not change compared with those with worsening symptoms. Although the mean differences ranged from less than a day to about 3 weeks, none exceeded 0.3 standard deviations. ESAS change scores had weak negative correlations (r = -0.11 to -0.21) with DAH measures. CPS change scores also showed weak, positive correlations (r = 0.23-0.24) with DAH measures. CONCLUSION: DAH measures are associated, albeit weakly, with clinically important improvement or maintenance of patient symptom burden in a diverse, seriously ill population.

Patterns of incident dementia codes during the COVID-19 pandemic at an integrated healthcare system.

BACKGROUND: The COVID-19 pandemic delayed diagnosis and care for some acute conditions and reduced monitoring for some chronic conditions. It is unclear whether new diagnoses of chronic conditions such as dementia were also affected. We compared the pattern of incident Alzheimer's disease and related dementia (ADRD) diagnosis codes from 2017 to 2019 through 2020, the first pandemic year. METHODS: Retrospective cohort design, leveraging 2015-2020 data on all members 65 years and older with no prior ADRD diagnosis, enrolled in a large integrated healthcare system for at least 2 years. Incident ADRD was defined as the first ICD-10 code at any encounter, including outpatient (face-to-face, video, or phone), hospital (emergency department, observation, or inpatient), or continuing care (home, skilled nursing facility, and long-term care). We also examined incident ADRD codes and use of telehealth by age, sex, race/ethnicity, and spoken language. RESULTS: Compared to overall annual incidence rates for ADRD codes in 2017-2019, 2020 incidence was slightly lower (1.30% vs. 1.40%), partially compensating later in the year for reduced rates during the early months of the pandemic. No racial or ethnic group differences were identified. Telehealth ADRD codes increased fourfold, making up for a 39% drop from face-to-face outpatient encounters. Older age (85+) was associated with higher odds of receiving telecare versus face-to-face care in 2020 (OR:1.50, 95%CI: 1.25-1.80) and a slightly lower incidence of new codes; no racial/ethnic, sex, or language differences were identified in the mode of care. CONCLUSIONS: Rates of incident ADRD codes dropped early in the first pandemic year but rose again to near pre-pandemic rates for the year as a whole, as clinicians rapidly pivoted to telehealth. With refinement of protocols for remote dementia detection and diagnosis, health systems could improve access to equitable detection and diagnosis of ADRD going forward.

Concordance of End-of-Life Care With End-of-Life Wishes in an Integrated Health Care System.

Importance: There is widespread consensus on the challenges to meeting the end-of-life wishes of decedents in the US. However, there is broad but not always recognized success in meeting wishes among decedents 65 years and older. Objective: To assess how well end-of-life wishes of decedents 65 years and older are met in the last year of life. Design, Setting, and Participants: This quality improvement study involved 3 planned samples of family members or informants identified as the primary contact in the medical record of Kaiser Permanente Southern California decedents. The first sample was 715 decedents, 65 years or older, who died between April 1 and May 31, 2017. The second was a high-cost sample of 332 decedents, 65 years or older, who died between June 1, 2016, and May 31, 2017, and whose costs in the last year of life were in the top 10% of the costs of all decedents. The third was a lower-cost sample with 655 decedents whose costs were not in the top 10%. The survey was fielded between December 19, 2017, and February 8, 2018. Main Outcomes and Measures: Meeting end-of-life wishes, discussions with next of kin and physicians, types of discordant care, and perceptions of amount of care received. Results: Surveys were completed by 715 of the 2281 next of kin in the all-decedent sample (mean [SD] decedent age, 80.9 [8.9] years; 361 [50.5%] male) for a 31% response rate; in 332 of the 1339 next of kin in the high-cost sample (mean [SD] decedent age, 75.5 [7.1] years; 194 [48.4%] male) for a 25% response rate; and in 659 of 2058 in the lower-cost sample (mean [SD] decedent age, 81.6 [8.8] years) for a 32% response rate. Respondents noted that high percentages of decedents received treatment that was concordant with their desires: 601 (88.9%) had their wishes met, 39 (5.9%) received a treatment they did not want, and 554 (84.1%) filled out an advance directive. A total of 509 respondents (82.5%) believed the amount of care was the right amount. Those with the highest costs had their wishes met at lower rates than those with lower costs (250 [80.1%] vs 553 [89.6%]). Conclusions and Relevance: In this Kaiser Permanente Southern California cohort, a large proportion of decedents 65 years and older had end-of-life discussions and documentation, had their wishes met, and received the amount of care they thought appropriate.

Findings and lessons learnt from early termination of a pragmatic comparative effectiveness trial of video consultations in home-based palliative care.

BACKGROUND: Health systems need evidence about how best to deliver home-based palliative care (HBPC) to meet the growing needs of seriously ill patients. We hypothesised that a tech-supported model that aimed to promote timely inter-professional team coordination using video consultation with a remote physician while a nurse is in the patient's home would be non-inferior compared with a standard model that includes routine home visits by nurses and physicians. METHODS: We conducted a pragmatic, cluster randomised non-inferiority trial across 14 sites (HomePal Study). Registered nurses (n=111) were randomised to the two models so that approximately half of the patients with any serious illness admitted to HBPC and their caregivers were enrolled in each study arm. Process measures (video and home visits and satisfaction) were tracked. The primary outcomes for patients and caregivers were symptom burden and caregiving preparedness at 1-2 months. RESULTS: The study was stopped early after 12 months of enrolment (patients=3533; caregivers=463) due to a combination of low video visit uptake (31%), limited substitution of video for home visits, and the health system's decision to expand telehealth use in response to changes in telehealth payment policies, the latter of which was incompatible with the randomised design. Implementation barriers included persistent workforce shortages and inadequate systems that contributed to scheduling and coordination challenges and unreliable technology and connectivity. CONCLUSIONS: We encountered multiple challenges to feasibility, relevance and value of conducting large, multiyear pragmatic randomised trials with seriously ill patients in the real-world settings where care delivery, regulatory and payment policies are constantly shifting.

Clinician Perspectives on Implementing Video Visits in Home-Based Palliative Care.

Background: Despite the increasing use and acceptance of technology in health care, there is limited evidence on the usefulness and appropriate use of telehealth in home-based palliative care (HBPC). As part of the process evaluation of a pragmatic trial of video visits in HBPC, we assessed clinician experience with video visit implementation. Methods: We assessed clinicians' experiences with and perception of the usefulness and appropriateness of video visits using anonymous surveys and brief qualitative interviews with a subset of survey participants. Qualitative analyses were guided by sociotechnical frameworks that emphasize technology's "value proposition" for its end users as being key to adoption. Results: Clinicians (36 physicians and 48 registered nurses) generally had favorable attitudes toward video visits and telehealth. Respondents felt confident in the skills needed to make their role in video visits successful. Clinicians were neutral on whether video visits were useful for their practice or enhanced the patient-caregiver experience. Clinicians found video visits to be most appropriate for follow-up care (as opposed to start of care). The interviews yielded two themes that complemented the survey findings: (1) factors enhancing the value proposition (positive responses from patients and families and convenience) and (2) factors diminishing the value proposition (issues related to the technology and scheduling). Discussion: Our findings provide insights into clinicians' experiences with implementing remote video physician consultations, facilitated by a nurse in the patient's home in the pre-COVID-19 era. Clinician views about video visits may have shifted with the pandemic, which occurred after our data collection was complete. Clinical Trials Registration No. NCT#03694431.

Protocol for a Noninferiority Comparative Effectiveness Trial of Home-Based Palliative Care (HomePal).

Introduction: As health care systems strive to meet the growing needs of seriously ill patients with high symptom burden and functional limitations, they need evidence about how best to deliver home-based palliative care (HBPC). We compare a standard HBPC model that includes routine home visits by nurses and prescribing clinicians with a tech-supported model that aims to promote timely interprofessional team coordination using video consultation with the prescribing clinician while the nurse is in the patient's home. We hypothesize that tech-supported HBPC will be no worse compared with standard HBPC. Methods: This study is a pragmatic, cluster randomized noninferiority trial conducted across 14 Kaiser Permanente sites in Southern California and the Pacific Northwest. Registered nurses (n = 102) were randomized to the two models so that approximately half of the participating patient-caregiver dyads will be in each study arm. Adult English or Spanish-speaking patients (estimate 10,000) with any serious illness and a survival prognosis of 1-2 years and their caregivers (estimate 4800) are being recruited to the HomePal study over ∼2.5 years. The primary patient outcomes are symptom improvement at one month and days spent at home. The primary caregiver outcome is perception of preparedness for caregiving. Study Implementation-Challenges and Contributions: During implementation we had to balance the rigors of conducting a clinical trial with pragmatic realities to ensure responsiveness to culture, structures, workforce, workflows of existing programs across multiple sites, and emerging policy and regulatory changes. We built close partnerships with stakeholders across multiple representative groups to define the comparators, prioritize and refine measures and study conduct, and optimize rigor in our analytical approaches. We have also incorporated extensive fidelity monitoring, mixed-method implementation evaluations, and early planning for dissemination to anticipate and address challenges longitudinally. Trial Registration: ClinicalTrials.gov: NCT#03694431.

End-of-Life Care in Patients Exposed to Home-Based Palliative Care vs Hospice Only.

OBJECTIVES: The current evidence base regarding the effectiveness of home-based palliative care (HomePal) on outcomes of importance to multiple stakeholders remains limited. The purpose of this study was to compare end-of-life care in decedents who received HomePal with two cohorts that either received hospice only (HO) or did not receive HomePal or hospice (No HomePal-HO). DESIGN: Retrospective cohorts from an ongoing study of care transition from hospital to home. Data were collected from 2011 to 2016. SETTING: Kaiser Permanente Southern California. PARTICIPANTS: Decedents 65 and older who received HomePal (n = 7177) after a hospitalization and two comparison cohorts (HO only = 25 102; No HomePal-HO = 22 472). MEASUREMENTS: Utilization data were extracted from administrative, clinical, and claims databases, and death data were obtained from state and national indices. Days at home was calculated as days not spent in the hospital or in a skilled nursing facility (SNF). RESULTS: Patients who received HomePal were enrolled for a median of 43 days and had comparable length of stay on hospice as patients who enrolled only in hospice (median days = 13 vs 12). Deaths at home were comparable between HomePal and HO (59% vs 60%) and were higher compared with No HomePal-HO (16%). For patients who survived at least 6 months after HomePal admission (n = 2289), the mean number of days at home in the last 6 months of life was 163 ± 30 vs 161 ± 30 (HO) vs 149 ± 40 (No HomePal-HO). Similar trends were also noted for the last 30 days of life, 25 ± 8 (HomePal, n = 5516), 24 ± 8 (HO), and 18 ± 11 (No HomePal-HO); HomePal patients had a significantly lower risk of hospitalizations (relative risk [RR] = .58-.87) and SNF stays (RR = .32-.77) compared with both HO and No HomePal-HO patients. CONCLUSION: Earlier comprehensive palliative care in patients' home in place of or preceding hospice is associated with fewer hospitalizations and SNF stays and more time at home in the final 6 months of life. J Am Geriatr Soc, 2019.

Impact of Inpatient Palliative Care on Quality of End-of-Life Care and Downstream Acute and Postacute Care Utilization.

BACKGROUND: Additional evidence is needed regarding the impact of inpatient palliative care (IPC) on the quality of end-of-life care and downstream utilization. AIM: Examine the effects of IPC on quality of end-of-life care and acute and postacute care use in a large integrated system. DESIGN: Retrospective cohort design. SETTING/PARTICIPANTS: Adult decedents from January 1, 2012, to December 31, 2014, who had at least one hospitalization at 11 Kaiser Permanente Southern California medical centers in the 12 months before death and not hospitalized for a trauma-related condition or receiving home-based PC or hospice were included in the cohort. MATERIALS AND METHODS: Inverse probability of treatment weighting of propensity scores was used to compare outcomes between patients exposed to IPC (n = 3742) and controls (n = 12,755) who never received IPC before death. RESULTS: Patients who received IPC were more likely to enroll in home-based PC or hospice (69% vs. 43%) and were less likely to die in a hospital (15% vs. 29%) or intensive care (2% vs. 9%) compared with controls (all, p < 0.001). IPC exposure was associated with higher risk for rehospitalization (HR: 1.18, 95% CI 1.11-1.25) and more frequent emergency department visits (RR: 1.16, 95% CI 1.07-1.26) with no increase in postacute care use compared with controls. Stratified analyses showed that IPC effects on acute care utilization were dependent on code status. CONCLUSION: IPC exposure was associated with higher enrollment in home-based PC/hospice and more deaths at home. The increased acute care utilization by the IPC group may reflect persistent confounding by indication.