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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.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).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%).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.

IMPORTANCE: Parkinson disease and related disorders (PDRD) are the fastest growing neurodegenerative illness in terms of prevalence and mortality. As evidence builds to support palliative care (PC) for PDRD, studies are needed to guide implementation. OBJECTIVE: To determine whether PC training for neurologists and remote access to a PC team improves outcomes in patients with PDRD in community settings. DESIGN, SETTING, AND PARTICIPANTS: This pragmatic, stepped-wedge comparative effectiveness trial enrolled and observed participants from 19 community neurology practices supported by PC teams at 2 academic centers from March 8, 2017, to December 31, 2020. Participants were eligible if they had PDRD and moderate to high PC needs. A total of 612 persons with PDRD were referred; 253 were excluded. Patients were excluded if they had another diagnosis meriting PC, were receiving PC, or were unable or unwilling to follow study procedures. Patients received usual care or the intervention based on when their community neurologist was randomized to start the intervention. Data were analyzed from January 2021 to September 2023. INTERVENTION: The intervention included (1) PC education for community neurologists and (2) team-based PC support via telehealth. MAIN OUTCOMES AND MEASURES: The primary outcomes were differences at 6 months in patient quality of life (QOL; measured by the Quality of Life in Alzheimer Disease Scale [QOL-AD]) and caregiver burden (Zarit Burden Interview) between the intervention and usual care. RESULTS: A total of 359 patients with PDRD (233 men [64.9%]; mean [SD] age, 74.0 [8.8] years) and 300 caregivers were enrolled. At 6 months, compared with usual care, participants receiving the intervention had better QOL (QOL-AD score, 0.09 [95% CI, −0.63 to 0.82] vs −0.88 [95% CI, −1.62 to −0.13]; treatment effect estimate, 0.97; 95% CI, 0.07-1.86; P = .03). No significant difference was observed in caregiver burden (Zarit Burden Interview score, 1.19 [95% CI, 0.16 to 2.23] vs 0.55 [95%, −0.44 to 1.54]; treatment effect estimate, 0.64; 95% CI, −0.62 to 1.90; P = .32). Advance directive completion was higher under the intervention (19 of 38 [50%] vs 6 of 31 [19%] among those without directives at the beginning of the study; P = .008). There were no differences in other outcomes. CONCLUSIONS AND RELEVANCE: PC education for community neurologists and provision of team-based PC via telehealth is feasible and may improve QOL and advance care planning. Overall treatment effects were small and suggest opportunities to improve both the intervention and implementation. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT03076671

ObjectiveThis observational study explores the association between palliative care (PC) involvement and high-cost imaging utilisation for patients with cancer patients during the last 3 months of life.MethodsAdult patients with cancer who died between 1 January 2012 and 31 May 2015 were identified. Referral to PC, intensity of PC service use, and non-emergent oncological imaging utilisation were determined. Associations between PC utilisation and proportion of patients imaged and mean number of studies per patient (mean imaging intensity (MII)) were assessed for the last 3 months and the last month of life. Similar analyses were performed for randomly matched case-control pairs (n = 197). Finally, the association between intensity of PC involvement and imaging utilisation was assessed.Results3784 patients were included, with 3523 (93%) never referred to PC and 261 (7%) seen by PC, largely before the last month of life (61%). Similar proportions of patients with and without PC referral were imaged during the last 3 months, while a greater proportion of patients with PC referral were imaged in the last month of life. PC involvement was not associated with significantly different MII during either time frame. In the matched-pairs analysis, a greater proportion of patients previously referred to PC received imaging in the period between the first PC encounter and death, and in the last month of life. MII remained similar between PC and non-PC groups. Finally, intensity of PC services was similar for imaged and non-imaged patients in the final 3 months and 1 month of life. During these time periods, increased PC intensity was not associated with decreased MII.ConclusionsPC involvement in end-of-life oncological care was not associated with decreased use of non-emergent, high-cost imaging. The role of advanced imaging in the PC setting requires further investigation.

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IMPORTANCE: Care planning is a critical function of palliative care teams, but the impact of advance care planning and goals of care discussions by palliative care teams has not been well characterized. OBJECTIVE: To describe the population of patients referred to inpatient palliative care consultation teams for care planning, the needs identified by palliative care clinicians, the care planning activities that occur, and the results of these activities. DESIGN, SETTING, AND PARTICIPANTS: This was a prospective cohort study conducted between January 1, 2013, and December 31, 2016. Seventy-eight inpatient palliative care teams from diverse US hospitals in the Palliative Care Quality Network, a national quality improvement collaborative. Standardized data were submitted for 73 145 patients. EXPOSURES: Inpatient palliative care consultation. RESULTS: Overall, 52 571 of 73 145 patients (71.9%) referred to inpatient palliative care were referred for care planning (range among teams, 27.5%-99.4% of patients). Patients referred for care planning were older (73.3 vs 67.9 years; F statistic, 1546.0; P < .001), less likely to have cancer (30.0% vs 41.1%; P < .001), and slightly more often had a clinical order of full code at the time of referral (54.6% vs 52.1%; P < .001). Palliative care teams identified care planning needs in 52 825 of 73 145 patients (72.2%) overall, including 42 467 of 49 713 patients (85.4%) referred for care planning and in 10 054 of 17 475 patients (57.5%) referred for other reasons. Through care planning conversations, surrogates were identified for 10 571 of 11 149 patients (94.8%) and 9026 patients (37.4%) elected to change their code status. Substantially more patients indicated that a status of do not resuscitate/do not intubate was consistent with their goals (7006 [32.1%] preconsultation to 13 773 [63.1%] postconsultation). However, an advance directive was completed for just 2160 of 67 955 patients (3.2%) and a Physicians Orders for Life-Sustaining Treatment form was completed for 8359 of 67 955 patients (12.3%) seen by palliative care teams. CONCLUSIONS AND RELEVANCE: Care planning was the most common reason for inpatient palliative care consultation, and care planning needs were often found even when the consultation was for other reasons. Surrogates were consistently identified, and patients’ preferences regarding life-sustaining treatments were frequently updated. However, a minority of patients completed legal forms to document their care preferences, highlighting an area in need of improvement.

IMPORTANCE: For patients with limited prognosis, some medication risks may outweigh the benefits, particularly when benefits take years to accrue; statins are one example. Data are lacking regarding the risks and benefits of discontinuing statin therapy for patients with limited life expectancy. OBJECTIVE: To evaluate the safety, clinical, and cost impact of discontinuing statin medications for patients in the palliative care setting. DESIGN, SETTING, AND PARTICIPANTS: This was a multicenter, parallel-group, unblinded, pragmatic clinical trial. Eligibility included adults with an estimated life expectancy of between 1 month and 1 year, statin therapy for 3 months or more for primary or secondary prevention of cardiovascular disease, recent deterioration in functional status, and no recent active cardiovascular disease. Participants were randomized to either discontinue or continue statin therapy and were monitored monthly for up to 1 year. The study was conducted from June 3, 2011, to May 2, 2013. All analyses were performed using an intent-to-treat approach. INTERVENTIONS: Statin therapy was withdrawn from eligible patients who were randomized to the discontinuation group. Patients in the continuation group continued to receive statins. MAIN OUTCOMES AND MEASURES: Outcomes included death within 60 days (primary outcome), survival, cardiovascular events, performance status, quality of life (QOL), symptoms, number of nonstatin medications, and cost savings. RESULTS: A total of 381 patients were enrolled; 189 of these were randomized to discontinue statins, and 192 were randomized to continue therapy. Mean (SD) age was 74.1 (11.6) years, 22.0% of the participants were cognitively impaired, and 48.8% had cancer. The proportion of participants in the discontinuation vs continuation groups who died within 60 days was not significantly different (23.8% vs 20.3%; 90% CI, −3.5% to 10.5%; P = .36) and did not meet the noninferiority end point. Total QOL was better for the group discontinuing statin therapy (mean McGill QOL score, 7.07 vs 6.74; P = .03). Few participants experienced cardiovascular events (13 in the discontinuation group vs 11 in the continuation group). Mean cost savings were $3.37 per day and $716 per patient. CONCLUSIONS AND RELEVANCE: This pragmatic trial suggests that stopping statin medication therapy is safe and may be associated with benefits including improved QOL, use of fewer nonstatin medications, and a corresponding reduction in medication costs. Thoughtful patient-provider discussions regarding the uncertain benefit and potential decrement in QOL associated with statin continuation in this setting are warranted. TRIAL REGISTRATION: clinicaltrials.gov Identifier: NCT01415934

Little is understood about the characteristics of dyspnea in patients with interstitial lung disease (ILD), and its severity is likely influenced by multiple factors. Depression and functional status are known to influence dyspnea in patients with COPD. The aim of this study was to determine the relationship of dyspnea with clinical parameters, including depression and functional status, in patients with ILD.

Dyspnea is the most common symptom in interstitial lung disease, yet little is known about its management. This review summarizes the available evidence for the treatment of dyspnea in interstitial lung disease.

Hospitalization for heart failure is a critical event associated with high rates of readmissions, morbidity, and mortality. This review examines the role of hospitalization for heart failure as an opportunity to assess comprehensive patient needs including palliative care needs.

Dyspnea is a common complication of interstitial lung disease, yet little is known about its cause and effective management. This review attempts to summarize the current state of the art in this area.