The Pediatric Palliative Care Quality Network: Palliative Care Consultation and Patient Outcomes.

BACKGROUND AND OBJECTIVES: Quality benchmarking in pediatric palliative care (PPC) helps identify gaps in care and guides quality improvement. Our study objective was to characterize inpatient PPC referral processes, interdisciplinary PPC delivery, and patient outcomes from a multisite PPC data repository. METHODS: Cross-sectional, administrative data analysis of 1587 PPC inpatient encounters at 5 US hospitals enrolled in the Pediatric Palliative Care Quality Network (2016-2022). PPC clinicians submitted data to a national repository for key quality indicators. Program and referral characteristics, care processes, and outcomes were examined descriptively. Time to referral, time on PPC service, and total hospital length of stay were compared by discharge disposition (alive or dead). RESULTS: Programs were in service for 13 (range 6-17) years on average. Most encounters involved children >1 year old (77%). Common diagnoses were solid tumor cancer (29%) and congenital or chromosomal conditions (14%). Care was often provided by ≤2 PPC team members (53%) until discharge (median = 7d, interquartile range 2-23). There were often multiple reasons for PPC referral, including psychosocial support (78%), goals of care discussions/advance care planning (42%), management of non-pain symptoms (34%), and pain (21%). Moderate-severe symptoms improved by second assessment for pain (71%), dyspnea (51%), fatigue (46%), and feeding issues (39%). CONCLUSIONS: Referrals to PPC were made early during hospitalization for psychosocial and physical symptom management. Moderate-severe symptom distress scores at initial assessment often improved. Findings highlight the need to ensure interdisciplinary PPC team staffing to meet the complex care needs of seriously ill children.

A Systematic Approach to Assessing and Addressing Palliative Care Needs in an Outpatient Population.

CONTEXT/OBJECTIVES: A critical frontier for palliative medicine is to develop systems to routinely and equitably address the palliative care (PC) needs of seriously ill populations. METHODS: An automated screen identified Medicare primary care patients who had serious illness based on diagnosis codes and utilization patterns. A stepped-wedge design was used to evaluate a six-month intervention through which a healthcare navigator assessed these seriously ill patients and their care partners for PC needs in the domains of 1) physical symptoms, 2) emotional distress, 3) practical concerns, and 4) advance care planning (ACP) via telephone surveys. Identified needs were addressed with tailored PC interventions. RESULTS: A total of 292/2175 (13.4%) patients screened positive for serious illness. A total of 145 completed an intervention phase; 83 completed a control phase. Severe physical symptoms were identified in 27.6%, emotional distress in 57.2%, practical concerns in 37.2%, and ACP needs in 56.6%. Twenty-five intervention patients (17.2%) were referred to specialty PC compared to six control patients (7.2%). Prevalence of ACP notes increased 45.5%-71.7% (p = 0.001) during the intervention and remained stable during the control phase. Quality of life remained stable during the intervention and declined 7.4/10-6.5/10 (P =0.04) during the control phase. CONCLUSION: Through an innovative program, patients with serious illness were identified from a primary care population, assessed for PC needs, and offered specific services to meet those needs. While some patients were appropriate for specialty PC, even more needs were addressed without specialty PC. The program resulted in increased ACP and preserved quality of life.

Inpatients With Dementia Referred for Palliative Care Consultation: A Multicenter Analysis.

Background and Objectives: Specialty palliative care (PC) may benefit patients with dementia by aligning treatment with goals and relieving symptoms. We aimed to compare demographics and processes and outcomes of PC for inpatients with dementia with those with systemic illnesses or cancer. Methods: This multicenter cohort study included standardized data for hospitalized patients with a primary diagnosis of dementia, systemic illnesses (cardiovascular, pulmonary, hepatic, or renal disease), or cancer among the 98 PC teams submitting data to the Palliative Care Quality Network from 2013 to 2019. Results: Of 155,356 patients, 4.5% (n = 6,925) had a primary diagnosis of dementia, 32.5% (n = 50,501) systemic illness, and 29.2% (n = 45,386) cancer. Patients with dementia were older (mean 85.5 years, 95% confidence interval [CI] 85.3-85.6) than those with systemic illnesses (mean 73.2, 95% CI 73.0-73.3) or cancer (mean 66.6, 95% CI 66.4-66.7; p < 0.0001). Patients with dementia were more likely to receive a PC consult within 24 hours of admission (52.3% vs systemic illnesses 37.4%; cancer 45.3%; p < 0.0001), more likely to be bed-bound (vs systemic illnesses odds ratio (OR) 2.23, 95% CI 2.09-2.39, p < 0.0001; vs cancer OR 3.45, 95% CI 3.21-3.72, p < 0.0001), and more likely to be discharged alive (vs systemic illnesses OR 2.22, 95% CI 2.03-2.43, p < 0.0001; vs cancer OR 1.51, 95% CI 1.36-1.67, p < 0.0001). Advance care planning/goals of care (GOC) was the primary reason for consultation for all groups. Few patients overall had advance directives or Physician Orders for Life-Sustaining Treatment before consultation. At the time of referral and at discharge, patients with dementia were more likely to have a code status of do not resuscitate/do not intubate (DNR/DNI) (62.6% and 81.0% vs 38.7 and 64.2% for patients with systemic illnesses and 33.4% and 60.5% for patients with cancer; p < 0.0001). Among the minority of patients with dementia that could self-report, moderate-to-severe symptoms were uncommon (pain 6.4%, anxiety 5.8%, nausea 0.4%, and dyspnea 3.5%). Discussion: Inpatients with a primary diagnosis of dementia receiving PC consultation were older and more functionally impaired than those with other illnesses. They were more likely to have a code status of DNR/DNI at discharge. Few reported distressing symptoms. These results highlight the need for routine clarification of GOC for patients with dementia.

Embedded Palliative Care for Amyotrophic Lateral Sclerosis: A Pilot Program and Lessons Learned.

Background and Objectives: Palliative care (PC) is recommended for people with amyotrophic lateral sclerosis (ALS), but there is scant literature about how to best provide this care. We describe the structure and impact of a pilot program that integrates longitudinal, interdisciplinary PC into the care of patients with ALS. Methods: Observational cohort study of patients with ALS referred to outpatient PC and seen for at least 3 PC visits October 2017-July 2020. Results: Fifty-five patients met the inclusion criteria. Three-quarters (74.5%) were Caucasian, and 78.2% spoke English. Patients were referred for advance care planning (58.2%), support for patient/family (52.7%), and symptoms other than pain (50.9%). Patients had a mean of 5 scheduled PC visits, the majority occurred by video. A PC physician, nurse, social worker, and chaplain addressed pain (for 43.6% of patients), nonpain symptoms (94.5%), psychosocial distress (78.2%), spiritual concerns (29.1%), care planning (96.4%), and supported family caregivers (96.4%). With PC, the rate of completion of advance directives increased from 16.4% to 36.4% (p = 0.001) and Physician Orders for Life-Sustaining Treatment forms from 10.9% to 63.6% (p < 0.001). Of the 27 patients who died, 77.8% used hospice, typically for more than 30 days. Eleven patients obtained aid-in-dying prescriptions, and 8 took these medications, accounting for 29.6% of the deaths. Discussion: Integrating longitudinal, interdisciplinary PC into the care of patients with ALS is feasible, addresses needs in multiple domains, and is associated with increased rates of advance care planning. Controlled studies are needed to further elucidate the impact of PC on patients with ALS, their families, and clinicians.

Utilization and Delivery of Specialty Palliative Care in the ICU: Insights from the Palliative Care Quality Network.

CONTEXT: Palliative care (PC) benefits critically ill patients but remains underutilized. Important to developing interventions to overcome barriers to PC in the ICU and address PC needs of ICU patients is to understand how, when, and for which patients PC is provided in the ICU. OBJECTIVES: Compare characteristics of specialty PC consultations in the ICU to those on medical-surgical wards. METHODS: Retrospective analysis of national Palliative Care Quality Network data for hospitalized patients receiving specialty PC consultation January 1, 2013 to December 31, 2019 in ICU or medical-surgical setting. 98 inpatient PC teams in 16 states contributed data. Measures and outcomes included patient characteristics, consultation features, process metrics and patient outcomes. Mixed effects multivariable logistic regression was used to compare ICU and medical-surgical units. RESULTS: Of 102,597 patients 63,082 were in medical-surgical units and 39,515 ICU. ICU patients were younger and more likely to have non-cancer diagnoses (all P < 0.001). While fewer ICU patients were able to report symptoms, most patients in both groups reported improved symptoms. ICU patients were more likely to have consultation requests for GOC, comfort care, and withdrawal of interventions and less likely for pain and/or symptoms (OR-all P < 0.001). ICU patients were less often discharged alive. CONCLUSION: ICU patients receiving PC consultation are more likely to have non-cancer diagnoses and less likely able to communicate. Although symptom management and GOC are standard parts of ICU care, specialty PC in the ICU is often engaged for these issues and results in improved symptoms, suggesting routine interventions and consultation targeting these needs could improve care.

Outpatient Palliative Care for Noncancer Illnesses: One Program's Experience with Implementation, Impact, and Lessons Learned.

Background: Despite substantial palliative care (PC) needs in people with serious illnesses other than cancer, outpatient PC is less available to these populations. Objectives: Describe the experience, impact, and lessons learned from implementing an outpatient PC service (OPCS) for people with noncancer illnesses. Design: Observational cohort study. Setting/Subjects: Patients seen by an OPCS at a United States academic medical center October 2, 2017-March 31, 2021. Measurements: Patient demographics and clinical characteristics, care processes, rates of advance care planning (ACP), and health care utilization. Results: During the study period, 736 patients were seen. Mean age was 66.7 years, 47.7% were women, and 61.4% were White. Nearly half (44.9%) had a neurologic diagnosis, 19.2% pulmonary, and 11.0% cardiovascular. Patients were most often referred for symptoms other than pain (62.2%), ACP (60.2%), and support for patient/family (48.2%). Three-quarters (74.1%) of visits occurred by video. A PC physician, nurse, social worker, and spiritual care provider addressed nonpain symptoms (for 79.2%), family caregiver needs (70.0%), psychosocial distress (69.9%), ACP (68.8%), care coordination (66.8%), pain (38.2%), and spiritual concerns (27.8%). Rates of advance directives increased from 24.6% to 31.8% (p < 0.001) and Physician Orders for Life-Sustaining Treatment forms from 15.6% to 27.3% (p < 0.001). Of 214 patients who died, 61.7% used hospice, with median hospice length-of-stay >30 days. Comparing the six months before initiating PC to the six months after, hospitalizations decreased by 31.3% (p = 0.001) and hospital days decreased by 29.8% (p = 0.02). Conclusions: Outpatient PC for people with noncancer illnesses is feasible, addresses needs in multiple domains, and is associated with increased rates of ACP and decreased health care utilization. Controlled studies are warranted.

Doing More with the Same: Comparing Public and Private Hospital Palliative Care within California.

Background: Public and private hospitals treat different patient populations, which may impact resources to deliver palliative care (PC). Objectives: Compare public and private hospital PC service structures, processes, and treatment outcomes. Design: Retrospective data analysis of the Palliative Care Quality Network between 2018 and 2019. Settings/Subjects: Six public and 40 private California hospitals provided PC consultations to 4244 and 38,354 adults, respectively. Measurements: PC team and patient characteristics, care processes, and treatment outcomes. Results: Public and private hospital PC services had similar full-time equivalent/100 beds (1.2 vs. 1.4, p = 0.4). Public hospital patients were younger (65.2 vs. 73.5, p < 0.001), less likely to be non-Hispanic Caucasian (22.5% vs. 57.5%, p < 0.001), or English speaking (51.1% vs. 79.9%, p < 0.001). Public hospital patients had more moderate/severe pain (21.3% vs. 19.3, p < 0.03), anxiety (12.4% vs. 9.2%, p < 0.001), nausea (6.5% vs. 4.7%, p < 0.001), and dyspnea (11.0% vs. 8.6%, p < 0.001). Both hospitals equally improved pain (70.9% vs. 70.5%, p = 0.83) and nausea (82.0% vs. 87.6%, p = 0.09), but public hospitals were less effective at improving anxiety (67.3% vs. 78.4%, p = 0.002) and dyspnea (58.4% vs. 67.9%, p = 0.05). Although there was no difference in hospital length of stay (public = 10.2 days vs. private = 9.5 days, p = 0.07), public hospitals conducted more patient visits (2.6 vs. 1.8, p < 0.001). They also more often clarified code status (87.7% vs. 84.4%, p < 0.001) and surrogate decision maker (94.9% vs. 89.9%, p < 0.001). Conclusions: Public hospital PC teams treat a more diverse symptomatic population. Yet, they achieved comparable outcomes with similar staffing to private hospitals. These findings have important ramifications for policy makers and public institution leaders.

Symptom Burden Is Associated with Increased Emergency Department Utilization among Patients with Cirrhosis.

Background: Patients with cirrhosis have significant morbidity and mortality, as well as substantial symptom burden. Objective: We investigated the relationship between symptom burden and inpatient health care utilization among patients with cirrhosis. Methods: Adult patients with cirrhosis being evaluated for or awaiting liver transplantation at an academic institution in the United States completed the Edmonton Symptom Assessment Scale (ESAS), a validated symptom evaluation tool with total scores ranging from 0 to 90. The outcomes of interest were emergency department (ED) visits, nonelective hospitalizations, hospital days, intensive care unit (ICU) admissions, and 30-day readmissions within 6 months. Adjusted incidence rate ratios (IRRs) were used to examine the relationship between ESAS scores and outcomes. Results: Of 233 patients (43% female, median age 61), the median total ESAS score was 16 (interquartile range 6-30). Higher total scores on the ESAS were associated with increased ED visits, hospitalizations, hospital days, and ICU days (all p < 0.04). After adjusting for age, gender, and Model for End-Stage Liver Disease-sodium, ESAS total score remained an independent predictor of ED visits (IRR 1.05, confidence interval [95% CI] 1.00-1.10, p = 0.03). Multivariate ESAS subscale analyses revealed that the physical symptom score was associated with ED visits (IRR 1.09, 95% CI 1.02-1.16, p = 0.01), but the psychological symptom score was not (IRR 1.03, 95% CI 1.00-1.08, p = 0.15). Conclusions: Patient-reported symptoms, particularly physical symptoms, are independently associated with ED visits among patients with cirrhosis being considered for liver transplantation. Further research is needed to examine whether addressing symptoms more aggressively, such as with palliative care co-management, could decrease ED utilization in this population.

Trends in Palliative Care Consultations in Critically Ill Patient Populations, 2013-2019.

CONTEXT: Critically ill patients have important palliative care (PC) needs in the intensive care unit (ICU), but specialty PC is often underutilized. OBJECTIVE: To evaluate changes in utilization and reasons for PC consultation over time. METHODS: Data from a national multi-site network of inpatient PC visits were used to identify patients age ≥18 years admitted to an ICU between 2013 and 2019. Year of ICU admission was the exposure. Primary diagnosis and reason for referral were identified by standardized process measures within the dataset at the time of referral. Trends in primary diagnosis and reason for referral were modeled as a function of year of ICU admission. RESULTS: Across 39,515 ICU patients seen by a PC team, overall numbers of consultations from the ICU increased each year. Referrals for patients with cancer decreased from 17.6% (95% CI 13.7%-21.5%) to 14.3% (95% CI 13.2%-14.7%) and for patients with cardiovascular disease increased from 16.8% in (95% CI 16.8%-16.9%) to 18.8% (95% CI 18.8%-18.9%). Reasons for referrals were primarily for goals of care and advance care planning and increased from 74.0% (95% CI 70.0%-78.0%) in 2013 to 80.0% (95% CI 79.4%-80.0%) in 2019 (P < 0.0001 for all trends). CONCLUSION: PC referrals in ICU patients with cancer are decreasing, while those for cardiovascular disease are increasing. Reasons for referrals in the ICU are commonly for goals of care; other reasons, like pain control are uncommon. Early goals of care conversations and further training in advance care planning should be emphasized in the ICU setting.

Better Together: A Mixed-Methods Study of Palliative Care Co-Management for Patients with Interstitial Lung Disease.

Background: The morbidity and mortality of interstitial lung disease (ILD) is high, despite novel therapeutics. Recognizing unmet needs for symptom management, advance care planning (ACP), and support for people with ILD and their families, we developed a palliative care-ILD collaborative care pilot program to improve access to palliative care. Methods: In the quantitative arm of this mixed-methods study, we evaluated which patients were cared for through the palliative care co-management program and the impact of the program on rates of ACP and opioid prescribing. In the qualitative arm, we interviewed patients and family caregivers, as well as pulmonary and palliative care clinicians, to understand perceptions about palliative care. Results: Thirty-one patients were co-managed by the palliative care and ILD teams during the study period. Half (48.4%) had idiopathic pulmonary fibrosis. Mean forced vital capacity (FVC) was 61.7%. Nearly half (48.4%) received all of their palliative care via telehealth. With palliative care, the rate of ACP notes increased from 3.2% to 100% (p < 0.001), rate of advance directive completion increased from 22.6% to 35.5% (p = 0.046), and rate of physician orders for life-sustaining treatments (POLST) form completion increased from 0% to 35.5% (p = 0.001). Half (51.6%) were prescribed opiates, overwhelmingly short-acting opiates to use as needed for severe episodic dyspnea. Themes from the qualitative analyses included that the palliative care team was supportive and patient-centered, improved symptoms and medication side effects, and enhanced illness understanding. Clinicians reported how palliative care co-management improved patient care and clinician experience, but barriers to referral remain including misperceptions about palliative care on the part of providers and patients. Conclusions: Palliative care co-management for patients with moderately severe ILD holds promise, and our experience can inform groups at other centers who are interested in developing such care models. Ongoing challenges include systematically reaching all patients who are likely to benefit.

Frailty is strongly associated with self-reported symptom burden among patients with cirrhosis.

OBJECTIVES: Although patients with cirrhosis often experience debilitating symptoms, few are referred for palliative care. Frailty is increasingly incorporated in liver transplantation evaluation and has been associated with symptom burden in other populations. We hypothesized that frail patients with cirrhosis are highly symptomatic and thus are likely to benefit from palliative care. METHODS: Patients with cirrhosis undergoing outpatient liver transplantation evaluation completed the Liver Frailty Index (grip strength, chair stands and balance) and a composite of validated measures including the Edmonton Symptom Assessment Scale, distress and quality of life (QOL) measures. RESULTS: Of 233 patients (median age 61 years, 43% women), 22% were robust, 59% prefrail and 19% frail. Overall, 38% of patients reported ≥1 severe symptoms based on preestablished Edmonton Symptom Assessment Scale criteria. Higher frailty categories were associated with increased prevalence of pain, dyspnea, fatigue, nausea, poor appetite, drowsiness, depression and poor well-being (test for trend, all P < 0.05). Frail patients were also more likely to report psychological distress and poor QOL (all P < 0.01). In univariate analysis, each 0.5 increase in liver frailty index was associated with 44% increased odds of experiencing ≥1 severe symptoms [95% confidence interval (CI), 1.2-1.7, P < 0.001], which persisted (odds ratio, 1.3, 95% CI, 1.0-1.6, P = 0.004) even after adjusting for Model for End Stage Liver Disease-Sodium, ascites, hepatic encephalopathy and age. CONCLUSION: In patients with cirrhosis, frailty is strongly associated with physical/psychological symptoms, including pain and depression and poor QOL. Frail patients with cirrhosis may benefit from palliative care co-management to address symptoms and improve QOL.

Comparing the Palliative Care Needs of Patients Seen by Specialty Palliative Care Teams at Home Versus in Clinic.

CONTEXT: Understanding the unique needs of patients seen in clinic versus at home can help palliative care (PC) teams choose how to maximize available resources. OBJECTIVES: To compare the characteristics and PC needs of patients seen by PC teams in clinic versus at home. METHODS: We analyzed data from the Palliative Care Quality Network between August 2016 and September 2019 and compared demographics, diagnosis, reason for referral, PC needs, functional status, self-reported symptoms, and patient-reported quality of life. RESULTS: Compared to patients receiving PC in clinic, patients receiving PC at home were more likely to be of age 80 years or older (odds ratio [OR] 7.5, 95% CI 5.0, 10.9, P < 0.0001), have lower functional status (mean Palliative Performance Scale score 53% vs. 68%, P < 0.0001), and were less likely to screen positive for needing pain management (OR 0.31, 95% CI 0.22, 0.42, P < 0.0001) or other symptom management (OR 0.61, 95% CI 0.41, 0.90, P = 0.01). Patients receiving care at home were more likely to be referred for care planning (goals of care discussions or advance care planning) (OR 11.5, 95% CI 8.3, 16.0 P < 0.0001) and patient/family support (OR 5.9, 95% CI 4.2, 8.3, P < 0.0001). CONCLUSION: Patients seen by PC teams at home had worse function and were more likely to be referred for care planning, while patients seen in clinic had more PC needs related to pain and symptom management. Despite these differences, both populations have significant PC needs that support routine assessment and require appropriately staffed interdisciplinary teams to address these needs.

Embedded palliative care for patients with metastatic colorectal cancer: a mixed-methods pilot study.

PURPOSE: Palliative care is recommended for patients with metastatic cancer, but there has been limited research about embedded palliative care for specific patient populations. We describe the impact of a pilot program that provided routine, early, integrated palliative care to patients with metastatic colorectal cancer. METHODS: Mixed methods pre-post intervention cohort study at an academic cancer center. Thirty control then 30 intervention patients with metastatic colorectal cancer were surveyed at baseline and 1, 3, 6, 9, and 12 months thereafter about symptoms, quality-of-life, and likelihood of cure. We compared survey responses, trends over time, rates of advance care planning, and healthcare utilization between groups. Patients, family caregivers, and clinicians were interviewed. RESULTS: Patients in the intervention group were followed for an average of 6.5 months and had an average of 3.5 palliative care visits. At baseline, symptoms were mild (average 1.85/10) and 78.2% of patients reported good/excellent quality-of-life. Half (50.9%) believed they were likely to be cured of cancer. Over time, symptoms and quality-of-life metrics remained similar between groups, however intervention patients were more realistic about their likelihood of cure (p = 0.008). Intervention patients were more likely to have a surrogate documented (83.3% vs. 26.7%, p < 0.0001), an advance directive completed (63.3% vs. 13.3%, p < 0.0001), and non-full code status (43.3% vs. 16.7%, p < 0.03). All patients and family caregivers would recommend the program to others with cancer. CONCLUSIONS: We describe the impact of an embedded palliative care program for patients with metastatic colorectal cancer, which improved prognostic awareness and rates of advance care planning.

A Comparison of Hospitalized Patients With Heart Failure and Cancer Referred to Palliative Care.

Importance: Growing evidence shows that palliative care (PC) improves treatment outcomes in patients with heart failure (HF), but few large-scale studies have prospectively evaluated the processes and outcomes associated with PC consultation for such patients in the real world. Objective: To characterize processes and outcomes of PC consultations for hospitalized patients with HF compared with patients with cancer. Design, Setting, and Participants: This cohort study of inpatient encounters at community and academic hospitals in the Palliative Care Quality Network enrolled participants between 2013 and 2017. Of a total of 135 197 patients, 57 272 adults with a primary diagnosis of HF or cancer receiving PC consultation were enrolled. Data analysis was performed from April 2018 to December 2019. Exposures: Primary diagnosis of HF or cancer. Main Outcomes and Measures: Symptom improvement and changes in care planning documentation after PC consultation. Results: At the time of consultation, patients with HF were older (mean age, 75.3 years [95% CI, 75.0-75.5 years] vs 65.2 years [95% CI, 65.0-65.3 years]; P < .001), had lower Palliative Performance Scale scores (mean, 35.6% [95% CI, 35.3%-35.9%] vs 42.4% [95% CI, 42.2%-42.6%]; P < .001), and were more likely to be in a critical care unit (5808 of 16 741 patients [35.3%] vs 4985 of 40 531 patients [12.5%]; P < .001) or a telemetry or step-down unit (5802 of 16 741 patients [35.2%] vs 7651 of 40 531 patients [19.2%]; P < .001) compared with patients with cancer. Patients with HF were less likely than patients with cancer to be referred to PC within 24 hours of admission (6773 of 16 741 patients [41.2%] vs 19 348 of 40 531 patients [49.0%]; P < .001) and had longer hospitalizations before receiving PC consultation requests (mean, 4.6 days [95% CI, 4.4-4.8 days] vs 3.9 days [95% CI, 3.8-4.0 days]; P < .001). Patients with HF were referred less frequently for symptoms other than pain (1686 of 16 488 patients [10.2%] vs 8587 of 39 609 patients [21.7%]; P < .001), but were equally likely to report improvements in anxiety (odds ratio, 0.85; 95% CI, 0.71-1.02; P = .08) and more likely to report improvements in dyspnea (odds ratio, 2.17; 95% CI, 1.83-2.57; P < .001) compared with patients with cancer. Patients with HF were less likely than those with cancer to be discharged alive (odds ratio, 0.78; 95% CI, 0.64-0.96; P = .02) or to be referred to hospice (odds ratio, 0.50; 95% CI, 0.47-0.53; P < .001). Conclusions and Relevance: These findings suggest that PC referral comes late for patients with HF and is used primarily to discuss care planning. Practitioners caring for patients with HF should consider involving PC experts earlier for symptom management.

Patient and Caregiver Experience with Outpatient Palliative Care Telemedicine Visits.

Background: Telemedicine visits reduce the physical and financial burdens associated with in-person appointments, especially for patients with serious illness. Little is known about patient and caregiver preferences regarding telemedicine visit timing and the discussion of sensitive topics by telemedicine. Objective: To characterize the experience of patients with serious illness and their caregivers receiving palliative care (PC) by telemedicine. Design: Mixed-methods telephone survey. Setting/Subjects: Patients and family caregivers who had at least one telemedicine visit with the outpatient PC team at our urban academic medical center. Results: A total of 35 patients and 15 caregivers were surveyed. Patient mean age was 61 years, 49% had cancer, and 86% were Caucasian. Caregiver mean age was 62 years. Mean satisfaction with PC telemedicine visits was 8.9 out of 10 for patients; 8.8 for caregivers. Patients (97%) and caregivers (100%) felt comfortable discussing sensitive topics over video. Participants felt telemedicine was an acceptable format to discuss most sensitive topics but 53% of caregivers preferred to receive bad news in person. Participants valued the convenience of telemedicine; they had concerns about rapport building and desired a more user-friendly telemedicine platform. Conclusions: Patients with serious illness and their caregivers rated telemedicine visits highly and felt comfortable discussing sensitive topics by video. Concerns included rapport building and telemedicine platform setup and quality. The rapid growth of telemedicine during coronavirus disease 2019 creates an imperative for research to understand the impact on the quality of care and mitigate any negative effects of telemedicine within a diverse population of patients.

Trends in Hospital-Based Specialty Palliative Care in the United States From 2013 to 2017.

Importance: Although palliative care (PC) historically focused on patients with cancer and those near the end of life, evidence increasingly demonstrates a benefit to patients with a broad range of serious illnesses and to those earlier in their illness. The field of PC has expanded and evolved rapidly, resulting in a need to characterize practice over time to understand whether it reflects evolving evidence and guidelines. Objective: To characterize current practice and trends among patients cared for and outcomes achieved by inpatient specialty PC services in the United States. Design, Setting, and Participants: This retrospective cohort study was performed from January 1, 2013, to December 31, 2017, at 88 US hospitals in which PC teams voluntarily participate in the Palliative Care Quality Network (PCQN), a national quality improvement collaborative. A total of 135 197 patients were referred to PCQN teams during the study period. Initial analyses of the study data were conducted from March 3 to March 21, 2018. Exposure: Inpatient PC consultation. Main Outcomes and Measures: A total of 23 standardized data elements collected by PCQN teams that provided information about the characteristics of referred patients, including age, sex, Palliative Performance Scale score, and primary diagnosis leading to PC consult; reason(s) given for the consultation; and processes of care provided by the PC team, including disciplines involved, number of family meetings held, advance care planning documentation completed, and screened for and intervened on needs. Results: A total of 135 197 patients were referred to inpatient PC (51.0% female; mean age, 71.3 years [range, 57.8-82.5 years]) and were significantly debilitated (mean Palliative Performance Scale score, 34.7%; range, 14.9%-56.8%). Cancer was the most common primary diagnosis (32.0%; range, 11.3%-93.9%), although rates decreased from 2013 to 2017 (odds ratio [OR], 0.84; 95% CI, 0.79-0.91; P < .001). Pain and other symptoms were common and improved significantly during the consultation period (pain: χ2 = 5234.4, P < .001; anxiety: χ2 = 2020.7, P < .001; nausea: χ2 = 1311.8, P < .001; dyspnea: χ2 = 1993.5, P < .001). Most patients were discharged alive (78.7%; range, 44.7%-99.4%), and this number increased over time (OR, 1.36; 95% CI, 1.27-1.46; P < .001). Compared with 2013, rates of discharge referral to clinic-based (OR, 4.00; 95% CI, 2.95-5.43; P < .001) and home-based PC (OR, 2.63; 95% CI, 1.92-3.61; P < .001) also increased significantly by 2017, whereas referrals to hospice decreased (OR, 0.56; 95% CI, 0.51-0.62; P < .001). Conclusions and Relevance: Inpatient PC teams cared for an increasing percentage of patients with diagnoses other than cancer and saw more patients discharged alive, consistent with guidelines recommending specialty PC for all patients with serious illness earlier in their illnesses. Most patients with symptoms improved quickly. Variation in practice and outcomes among PCQN members suggests that there are opportunities for further improvements in care.

Outcomes of Palliative Care Consultations for Hospitalized Patients With Liver Disease.

CONTEXT: Although palliative care (PC) has been shown to improve symptoms and end-of-life (EOL) care for patients with cancer, data are lacking on the patterns of use and outcomes of PC consultations for hospitalized patients with liver disease. OBJECTIVES: We sought to characterize the patterns of use and outcomes of PC consultations for hospitalized patients with liver disease compared with patients with cancer. METHODS: We conducted an observational study using data from the Palliative Care Quality Network (PCQN). The PCQN contains prospectively collected data on 135,197 hospitalized patients receiving PC consultations at 88 PCQN sites between January 2013 and December 2017. The PCQN data set includes patient demographics, processes of care, and patient-level clinical outcomes. RESULTS: The cohort included 44,933 patients, of whom 4402 (9.8%) had liver disease and 40,531 (90.2%) had cancer. Patients with liver disease were younger (58.9 years vs. 65.2 years, P < 0.0001) and had higher in-hospital mortality (28% vs. 16.8%, P < 0.0001). Patients with liver disease were more likely to receive PC consultations to address goals of care (81.7% vs. 67.9%, P < 0.0001) as opposed to pain management (10.9% vs. 34.9%, P < 0.0001). Both groups had similar rates of symptom improvement and change in resuscitation preferences after PC consultation. CONCLUSION: Hospitalized patients with liver disease were more likely to have a PC referral to address goals of care compared with those with cancer and were more likely to die in the hospital. Despite late PC consultations, patients with liver disease experienced improvement in symptoms and clarification of their goals of care, similar to those with cancer.

Feasibility of Implementing a Palliative Care Intervention for People with Heart Failure: Learnings from a Pilot Randomized Clinical Trial.

Background: People with heart failure (HF) have high morbidity and mortality and may benefit from palliative care (PC). Objective: To pilot a randomized, clinical trial of a PC intervention for people with HF. Design: Participants were randomized to usual care (UC) or intervention (UC plus specialty PC) between January 2012 and December 2013. The initial PC consultation was conducted in-hospital, with six additional contacts from the PC team over six months. Setting/Subjects: The study was undertaken in a large, urban, academic medical center with patients (n = 30) with New York Heart Association HF Class II-IV. Measurements: Patients completed a survey at baseline, three and six months, assessing pain, dyspnea, depression, and quality of life (QoL). Results: Although there were significant improvements in mean scores from baseline to six months for pain (4.3 vs. 2.4, p = 0.05), dyspnea (3.9 vs. 2.2, p = 0.03), and QoL (59.2 vs. 42.7, p = 0.001), there were no differences between study groups over time. On average, participants in the intervention group received 5 out of 6 contacts and were satisfied with the intervention. Conclusions: The intervention was well accepted by patients, safe, and feasible. Our findings suggest that PC interventions for people with HF should match the PC needs of the patient. Given the trajectory of HF, studies may need to recruit outpatients and follow patients for a longer period to fully evaluate the impact of PC interventions. Clinical trials Identifier: NCT01461681.

Inpatients with neurologic disease referred for palliative care consultation.

OBJECTIVES: To compare characteristics and needs of inpatients with neurologic disease to those with cancer referred for palliative care (PC) consultation. METHODS: This prospective cohort study used data collected by the Palliative Care Quality Network from January 2013 until December 2016. We compared demographics, reasons for consultation, discharge disposition, Palliative Performance Scale (PPS) score, and outcomes of care among patients with a primary diagnosis of neurologic disease vs cancer. RESULTS: The most common reason for PC consultation in all patients was assistance with goals of care and advanced care planning. PC consultation was less often requested for pain and symptom management in patients with neurologic disease compared to patients with cancer (13.7% vs 43%, odds ratio 0.3) and more often for assistance with transition to comfort measures only and withdrawal of life-sustaining treatment (19.1% vs 7.1%, odds ratio 1.3). Patients with cancer had higher PPS scores (42.1% vs 23.4%) and were more likely to be discharged home from the hospital, while patients with neurologic disease were more likely to die in hospital. CONCLUSIONS: Patients with neurologic disease as a reason for PC consultation are more in need of end-of-life care planning and more likely to die in the hospital than those with cancer, suggesting that targeted approaches may best address the needs of each patient population. Our results can direct further research and education in neuropalliative care.

A framework for measurement and harmonization of pediatric multiple sclerosis etiologic research studies: The Pediatric MS Tool-Kit.

BACKGROUND: While studying the etiology of multiple sclerosis (MS) in children has several methodological advantages over studying etiology in adults, studies are limited by small sample sizes. OBJECTIVE: Using a rigorous methodological process, we developed the Pediatric MS Tool-Kit, a measurement framework that includes a minimal set of core variables to assess etiological risk factors. METHODS: We solicited input from the International Pediatric MS Study Group to select three risk factors: environmental tobacco smoke (ETS) exposure, sun exposure, and vitamin D intake. To develop the Tool-Kit, we used a Delphi study involving a working group of epidemiologists, neurologists, and content experts from North America and Europe. RESULTS: The Tool-Kit includes six core variables to measure ETS, six to measure sun exposure, and six to measure vitamin D intake. The Tool-Kit can be accessed online ( www.maelstrom-research.org/mica/network/tool-kit ). CONCLUSION: The goals of the Tool-Kit are to enhance exposure measurement in newly designed pediatric MS studies and comparability of results across studies, and in the longer term to facilitate harmonization of studies, a methodological approach that can be used to circumvent issues of small sample sizes. We believe the Tool-Kit will prove to be a valuable resource to guide pediatric MS researchers in developing study-specific questionnaire.