Development and Piloting of a Bereaved Care Partner Survey to Inform Quality Improvement in ALS Supportive Care.

OBJECTIVES: Bereaved care partner surveys typically focus on the experience with care in the final days of life. We sought to develop and pilot a novel bereaved care partner survey to understand experiences with ALS supportive care provided throughout the illness and identify opportunities for quality improvement. METHODS: We developed the survey using a multisite, interdisciplinary consensus process involving ALS and palliative care clinicians as well as patient advocates. We then piloted the survey at a single site via video interviews with care partners of patients who died from ALS between three and 15 months prior. Qualitative findings were analyzed using Rapid Qualitative Analysis. RESULTS: The survey includes 17 core questions and nine demographic items. Questions inquire about whether the patient and care partner received adequate help with physical symptoms, emotional and practical needs, education about the illness and how to provide hands-on care, preparing for what was to come, and bereavement. They also query whether care was person-centered and consistent with the patient's values and preferences. During the pilot with 18 bereaved care partners, the tool generated detailed feedback about aspects of care to preserve as well as how to improve ALS supportive care. DISCUSSION: We developed and piloted a bereaved care partner survey to understand and improve the quality of ALS supportive care, which was found to be feasible and acceptable. Next steps include testing it at additional centers in order to generate learnings that can advance ALS supportive care in ways that are meaningful to patients and care partners.

Prognoses Associated With Palliative Performance Scale Scores in Modern Palliative Care Practice.

Importance: The Palliative Performance Scale (PPS) is one of the most widely used prognostic tools for patients with serious illness. However, current prognostic estimates associated with PPS scores are based on data that are over a decade old. Objective: To generate updated prognostic estimates by PPS score, care setting, and illness category, and examine how well PPS predicts short- and longer-term survival. Design, Setting, and Participants: This prognostic study was conducted at a large academic medical center with robust inpatient and outpatient palliative care practices using electronic health record data linked with data from California Vital Records. Eligible participants included patients who received a palliative care consultation between January 1, 2018, and December 31, 2020. Data analysis was conducted from November 2022 to February 2024. Exposure: Palliative care consultation with a PPS score documented. Main Outcomes and Measures: The primary outcomes were predicted 1-, 6-, and 12-month mortality and median survival of patients by PPS score in the inpatient and outpatient settings, and performance of the PPS across a range of survival times. In subgroup analyses, mortality risk by PPS score was estimated in patients with cancer vs noncancer illnesses and those seen in-person vs by video telemedicine in the outpatient setting. Results: Overall, 4779 patients (mean [SD] age, 63.5 [14.8] years; 2437 female [51.0%] and 2342 male [49.0%]) had a palliative care consultation with a PPS score documented. Of these patients, 2276 were seen in the inpatient setting and 3080 were seen in the outpatient setting. In both the inpatient and outpatient settings, 1-, 6-, and 12-month mortality were higher and median survival was shorter for patients with lower PPS scores. Prognostic estimates associated with PPS scores were substantially longer (2.3- to 11.7-fold) than previous estimates commonly used by clinicians. The PPS had good ability to discriminate between patients who lived and those who died in the inpatient setting (integrated time-dependent area under the curve [iAUC], 0.74) but its discriminative ability was lower in the outpatient setting (iAUC, 0.67). The PPS better predicted 1-month survival than longer-term survival. Mortality rates were higher for patients with cancer than other serious illnesses at most PPS levels. Conclusions and Relevance: In this prognostic study, prognostic estimates associated with PPS scores were substantially longer than previous estimates commonly used by clinicians. Based on these findings, an online calculator was updated to assist clinicians in reaching prognostic estimates that are more consistent with modern palliative care practice and specific to the patient's setting and diagnosis group.

Strategies to Make Telemedicine a Friend, Not a Foe, in the Provision of Accessible and Equitable Cancer Care.

Telemedicine has the potential to improve access to cancer care, particularly for patients with functional limitations, high symptom burdens, or financial or geographic constraints. However, there is also a risk that telemedicine can widen healthcare disparities among patients facing systemic disadvantages like those with technological barriers, poor digital literacy, older age, or non-English language preferences. To optimize telemedicine usage, we must implement practical strategies like video onboarding programs, user-friendly technology platforms, optimizing the clinician's environment, and best practices for using interpreters. Policy changes such as state licensing requirements, controlled substance prescribing requirements, and payment parity are also crucial. This Perspective highlights these practical strategies and policy recommendations to ensure accessible and equitable cancer care augmented by telemedicine.

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.

Differential Use of Outpatient Palliative Care by Demographic and Clinical Characteristics.

CONTEXT: Little is known about equity in utilization of outpatient palliative care (PC). OBJECTIVES: To explore whether patient-level factors are associated with completing initial and follow-up visits among patients referred to outpatient PC. METHODS: Using electronic health record data, we generated a cohort of all adults referred to outpatient PC at University of California, San Francisco October 2017-October 2021. We assessed whether demographic and clinical characteristics were associated with completion of 1) an initial PC visit and 2) at least one follow-up visit. RESULTS: Of patients referred to outpatient PC (N = 6,871), 60% completed an initial visit; 66% of those who established care returned for follow-up. In multivariable models, patients who were less likely to complete an initial visit were older (OR per decade 0.94; 95% confidence interval [CI] 0.89-0.98), Black (OR 0.71; 95% CI 0.56-0.90), Latinx (OR 0.69; 95% CI 0.57-0.83), unpartnered (OR 0.80; 95% CI 0.71-0.90), and had Medicaid (OR 0.82; 95% CI 0.69-0.97). Among patients who completed an initial visit, those less likely to complete a follow-up visit were older (OR 0.88; 95% CI 0.82-0.94), male (OR 0.83; 95% CI 0.71-0.96), preferred a language other than English (0.71; 95% CI 0.54-0.95), and had a serious illness other than cancer (OR 0.74; 95% CI 0.61-0.90). CONCLUSION: We found that Black and Latinx patients were less likely to complete an initial visit and those with a preferred language other than English were less likely to complete a follow-up visit. To promote equity in PC, these differences and their impact on outcomes must be explored.

Top Ten Tips Palliative Care Clinicians Should Know About Delivering Specialty-Aligned Palliative Care.

Specialty-aligned palliative care (SAPC) refers to interprofessional palliative care (PC) that is delivered to a specific population of patients in close partnership with other primary or specialty clinicians. As evolving PC models address physical, psychosocial, and spiritual suffering across illnesses and settings, PC clinicians must acquire advanced knowledge of disease-specific symptoms, common treatments, and complications that impact prognosis and outcomes. The tips provided in this article draw on the experience and knowledge of interprofessional PC and other specialist clinicians from diverse institutions across the United States who have developed and studied SAPC services across different disease groups. Recommendations include focusing on approaching specialty team partnerships with humility, curiosity, and diplomacy; focusing on patient populations where PC needs are great; clarifying how work and responsibilities will be divided between PC and other clinicians to the extent possible; using consults as opportunities for bidirectional learning; and adapting workflows and schedules to meet specialty team needs while managing expectations and setting limits as appropriate. Furthermore, to provide effective SAPC, PC clinicians must learn about the specific symptoms, prognoses, and common treatments of the patients they are serving. They must also build trusting relationships and maintain open communication with patients and referring clinicians to ensure integrated and aligned PC delivery.

Palliative care referrals in patients with pulmonary arterial hypertension: The Pulmonary Hypertension Association Registry.

BACKGROUND: Pulmonary arterial hypertension (PAH) is a life limiting disease with substantial symptom burden and healthcare utilization. Palliative care alleviates physical and emotional symptoms for patients with serious illness, and has been underutilized for these patients. OBJECTIVE: To characterize patients with PAH referred to palliative care and identify predictors of referral. METHODS: We conducted an observational study of adult patients enrolled in the Pulmonary Hypertension Association Registry from January 2015 through June 2021, performing descriptive statistics on patient characteristics at baseline for all patients and the subset referred to palliative care. These characteristics were modeled in a backwards elimination Cox regression with time to referral to palliative care as the primary outcome. RESULTS: 92 of 1,578 patients were referred to palliative care (5.8%); 43% were referred at their last visit prior to death. Referrals were associated with increasing age per decade (hazard ratio 1.35 [95% confidence interval 1.16-1.58]), lower body mass index (hazard ratio 0.97 [95% confidence interval 0.94-0.998]), supplemental oxygen use (hazard ratio 2.01 [95% confidence interval 1.28-3.16]), parenteral prostanoid use (hazard ratio 2.88 [95% confidence interval 1.84-4.51]), and worse quality of life, measured via lower physical (hazard ratio 0.97 [95% confidence interval 0.95-0.99]) and mental (hazard ratio 0.98 [95% confidence interval 0.96-0.995]) scores on the 12-item Short Form Health Survey. CONCLUSION: Patients with PAH are infrequently referred to palliative care, even at centers of excellence. Referrals occur in sicker patients with lower quality of life scores, often close to the end of life.

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.

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.

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.

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.

Identifying Opportunities to Improve Pain Among Patients With Serious Illness.

CONTEXT: Pain is a common and distressing symptom. Pain management is a core competency for palliative care (PC) teams. OBJECTIVE: Identify characteristics associated with pain and pain improvement among inpatients referred to PC. METHODS: Thirty-eight inpatient PC teams in the Palliative Care Quality Network entered data about patients seen between December 12, 2012 and March 15, 2016. We examined patient and care characteristics associated with pain and pain improvement. RESULTS: Of patients who could self-report symptoms, 30.7% (4959 of 16,158) reported moderate-to-severe pain at first assessment. Over 40% of these patients had not been referred to PC for pain. Younger patients (P < 0.0001), women (P < 0.0001), patients with cancer (P < 0.0001), and patients in medical/surgical units (P < 0.0001) were more likely to report pain. Patients with pain had higher rates of anxiety (P < 0.0001), nausea (P < 0.0001), and dyspnea (P < 0.0001). Sixty-eight percent of patients with moderate-to-severe pain improved by the PC team's second assessment within 72 hours; 74.7% improved by final assessment. There was a significant variation in the rate of pain improvement between PC teams (P < 0.0001). Improvement in pain was associated with improvement in anxiety (OR = 2.9, P < 0.0001) and dyspnea (OR = 1.4, P = 0.03). Patients who reported an improvement in pain had shorter hospital length-of-stay by two days (P = 0.003). CONCLUSION: Pain is common among inpatients referred to PC. Three-quarters of patients with pain improve and improvement in pain is associated with other symptom improvement. Standardized, multisite data collection can identify PC patients likely to have marked and refractory pain, create benchmarks for the field, and identify best practices to inform quality improvement.

The Palliative Care Quality Network: Improving the Quality of Caring.

OBJECTIVE: Describe the establishment of the palliative care quality network (PCQN) with guidance on how teams can develop similar collaborations. BACKGROUND: In the current healthcare environment, palliative care (PC) teams must be able to demonstrate value and provide efficient care while supporting the clinicians who provide that care. DESCRIPTION: The PCQN is a national quality improvement (QI) collaborative comprised of specialty PC teams from a diverse range of hospitals across the United States Results: PCQN members identified five core activities to support PC teams. 1) Collection of standardized data: 23 core items and 22 optional data elements document patient demographics, consultation characteristics, processes of care, and clinical outcomes. 2) Data analyses with benchmarking including reports generated in real time providing summary, trend, member comparison, and cross-tab analyses. 3) QI collaborative; QI initiatives have addressed pain management, surrogate decision-making, spiritual screening, and anxiety assessment. 4) Education and personal development provided through monthly conference calls, a listserv, PCQN website, and twice-yearly conferences. 5) Financial analysis; a software program enables PC teams to calculate the financial impact of the care provided. CONCLUSIONS: The central tenet of the PCQN is to improve quality of care for patients with serious illness and their families, increase the efficient use of healthcare resources, and support growth and sustainability of PC programs. Building and tending to this community takes time to ensure engagement of all members and remain responsive to evolving needs of patients, families, PC teams, and stakeholders.