Publications

• Conservative Management is customized CKD care, symptom management, and support to navigate care across the CKD trajectory through end of life.
• Conservative management is defined by shared decision-making and interdisciplinary teamwork in alliance with patients and care partners.
• Implementation of conservative management hinges on each practice's logistical considerations and resource availability.

Conservative management is holistic and whole-person care for people with kidney failure. This care pathway is often a good choice for patients who prioritize independence, quality of life, and avoidance of burdens associated with life prolonging therapies such as dialysis. This Kidney Health Guidance document aims to provide evidence-based clinical guidance for best practices in conservative management care delivery. Conservative management comprises three components including customized CKD care, symptom management, and smooth navigation of care transitions. This Kidney Health Guidance describes the application of these three components across the illness trajectory, including the role of shared decision-making, care partner engagement, and interdisciplinary collaboration. Practical strategies are outlined for health care professionals to integrate conservative management care delivery into practice.

Early life adversity confers lifelong health risk, and mindfulness-based interventions (MBIs) show promise for mitigating risk. This trial evaluated feasibility and acceptability of remote mindfulness and coping interventions among emerging adults who recalled childhood trauma with the goal to inform an efficacy trial examining stress-related health outcomes. Eighty-one healthy adults (ages 18–29) who recalled physical, emotional, or sexual abuse during childhood were enrolled. Participants were randomly assigned to 2-week mindfulness or coping comparison interventions and completed lab-based and ambulatory assessments at preintervention, postintervention, and one-month follow-up. Primary outcomes included measures of feasibility and acceptability. Global psychosocial outcomes were secondary. Enrollment and retention targets were reached; of 891 people recruited, 81 were eligible and enrolled, and 88% completed the trial. The intervention programs met benchmarks for feasibility, acceptability, and safe implementation. Participants completed 95% of intervention lessons and 59% of daily life practice prompts, and 93% reported positive treatment expectancies. Three mindfulness participants (8%) showed substantial increases in mental health symptoms. No serious adverse events were reported, but 53% of participants had challenging emotional experiences during the training. The assessment protocol was feasible, with 87% of ambulatory assessments and 99% of blood samples collected. There were no group differences on feasibility/acceptability outcomes. Participants in both groups showed medium-sized improvements on global mental health and mindfulness measures. Two-week remote mindfulness and control interventions were feasible and acceptable among adults exposed to childhood trauma. Further work is warranted to evaluate whether MBIs can offset health risk.

Despite numerous calls to action, palliative care remains inadequately integrated into pulmonary–critical care medicine (PCCM) practice and is de-emphasized in PCCM education. Barriers to specialty palliative care demonstrate a clear need for efficient and effective primary palliative care delivered by PCCM clinicians with advanced training. This American Thoracic Society Workshop Report builds on our policy statement on the proactive integration of palliative care in serious respiratory illness with 2 goals: (1) Develop a scalable “PalliPulm” framework to improve palliative care education and practice in PCCM and (2) inform palliative care–focused education and training programs in PCCM to guide future initiatives. We convened an interdisciplinary and interprofessional group of experts between May 2024 and February 2025 over 4 phases: (1) hybrid workshop; (2) virtual breakout groups; (3) nominal group technique and rapid qualitative analysis; and (4) workshop report development. We identified core primary palliative care skills that PCCM trainees and clinicians should obtain and prioritized the most essential skills—that is, symptom management, serious illness communication, and caregiver support in ambulatory settings and serious illness communication, symptom management, palliative care fundamentals, and end of life care in inpatient settings. We describe pragmatic ways to integrate palliative care into PCCM education and offer advanced educational resources. We provide recommendations for framing palliative care to patients and caregivers, illustrate ways to deliver culturally appropriate palliative care, and offer a path for the future of PalliPulm. This report guides PCCM leaders, trainees, and clinicians to establish scalable PalliPulm educational and practice initiatives and improve its integration into practice.

Prenatal diagnosis of congenital heart disease (CHD) causes parental distress, at least in part due to uncertainties regarding the diagnosis, prognosis, treatment, and family impact. In initial fetal cardiology consultations, over half of dialogue focuses on uncertainties, and clinician communication can influence how parents cope. No prior study has gathered parental perspectives on what would be helpful when communicating about uncertainties in these initial conversations. The objective of this study was to gather parental perspectives on optimal clinician-caregiver communication about uncertainties after prenatal CHD diagnosis. Parents who received a prenatal diagnosis of CHD at one of two fetal cardiology centers were recruited to participate in a web-based concept mapping project conducted using four sequential activities. First, brainstorming collected responses to the prompt: "What are some things the team can do or say to help parents with the things that are not yet known?" Second, sorting grouped similar statements gathered during brainstorming. Third, rating assessed each statement in terms of perceived parental importance and impact using a Likert scale. Finally, after multidimensional scaling and hierarchical cluster analysis, parents participated in small group interpreting sessions, during which the findings were examined to identify targets for future intervention. We enrolled 31 parents, including 23 mothers, 8 fathers, and 2 bereaved parents. All received a CHD diagnosis between 2020 and 2023. Average participant age was 33 years (interquartile range: 5 years). Participants brainstormed 108 statements; they then sorted 90 distinct statements into 7 categories, called clusters. Clusters included topics of conveying empathy, educating about the diagnosis, preparing families to face uncertainties, and providing resources and support. Overall, the cluster, "Empathy from Professionals" was rated most important. "Empathy from Professionals" and "Realistic Expectations for after Birth" were rated as most impactful. This study identifies parent-prioritized, actionable communication strategies for addressing uncertainty after prenatal CHD diagnosis. Parents emphasized the importance of empathic communication, anchoring uncertainty within known and controllable factors, realistic expectations, and access to practical and peer support. These findings provide potential context-specific intervention targets for optimizing clinician-caregiver communication in fetal cardiology.

BACKGROUND: Children with rare diseases and their family caregivers must manage extraordinary care needs, significant symptom burdens, and uncertain prognoses. Pediatric Advanced Care Planning (pACP) is a promising communication-based approach to better support these families. However, empirical evidence regarding the efficacy of pACP among this population is lacking. In response, our team developed and successfully pilot-tested FACE-Rare (FAmily-CEntered Advance Care Planning - Rare Disorders).

METHODS & DESIGN: This manuscript describes the protocol for a randomized controlled trial evaluating FACE-Rare's efficacy for improving family quality of life (QOL). We aim to enroll 160 families (child-family caregiver dyads/triads) from three pediatric health systems across the United States. Families will be randomized 1:1 to FACE-Rare or an enhanced treatment as usual control. FACE-Rare is delivered by trained facilitators over three 60-min sessions either virtually (videoconference) or in-person. FACE-Rare utilizes the Carer's Alert Thermometer to identify and address a family's palliative care needs and the Respecting Choices: Next Steps pACP interview to facilitate future medical decision-making. Our primary outcome is family caregiver QOL (caregiver appraisal, emotional distress, and existential well-being). Secondary outcomes include families' palliative care needs and social connection. An exploratory aim seeks to describe the interactions between sociodemographic characteristics (e.g., household income) and family caregiver QOL.

CONCLUSION: This is the first randomized controlled trial testing the efficacy of a pACP intervention tailored for families of children with rare diseases. Findings will provide critical evidence about the impact of pACP on family caregiver QOL and medical decision-making for this underserved population.

OBJECTIVES: To summarize symptom network characteristics in patients with solid tumors undergoing chemotherapy and synthesize evidence on core symptoms, bridge symptoms, and temporal associations.

METHODS: We systematically searched eight databases through October 2025 to identify studies that applied symptom network analysis to adults with solid tumors receiving chemotherapy. Eligible studies assessed symptoms using cross-sectional, longitudinal, or interventional designs. Two reviewers independently screened articles and extracted data on study characteristics, symptom assessment, and network outcomes. Methodological quality was assessed using the National Institutes of Health Study Quality Assessment Tool.

RESULTS: Twenty-seven studies involving 13,452 participants were included, yielding 79 symptom networks. Fatigue was the most frequently identified core symptom (10/20, 50%), whereas sadness, lack of appetite, and nausea each occurred in 10% of studies, with variation across cancer types, treatment phases, and latent classes. Bridge symptoms included disturbed sleep, lack of appetite, and dry mouth (2/7, 28.6%). Studies evaluating temporal associations found that symptoms such as sadness, dyspnea, somnolence, and dry mouth predicted subsequent changes in appetite, distress, nausea, and other outcomes. Strength metrics showed acceptable stability (correlation stability coefficients: 0.28-0.83).

CONCLUSIONS: Fatigue was frequently identified as a central symptom across studies, largely reflecting evidence from breast cancer studies. Core symptoms varied across cancer types, treatment phases, and latent classes, suggesting heterogeneity.

IMPLICATIONS FOR NURSING PRACTICE: These findings highlight the importance of considering relationships among symptoms in clinical care. Focusing on key symptoms such as fatigue, while tailoring management strategies to cancer-specific symptom patterns, may support more effective symptom management.

BACKGROUND: Addressing goals of care (GOC) serves a crucial role throughout the course of a patient's illness, but for it to be useful and enduring, documentation must provide enough detail to be actionable for the next clinician. Our aim is to describe GOC documentation content and quality across four clinical specialties (palliative care, hospitalists, internal medicine [IM] residents, and critical care) using structured assessment of high versus low quality documentation.

METHODS: Literature review suggests that five domains are most important for GOC notes: participants, prognosis, patient goals and values, treatment options, and advance directives. As part of an internal quality improvement initiative at our quaternary academic referral center in the Northeast United States, a novel note assessment tool was constructed and iteratively adjusted to achieve 80% interrater reliability. We then used this to review inpatient GOC notes from patients admitted under IM services with or without a palliative care consult (n = 100, 25 notes from each clinical specialty).

RESULTS: Only 69 out of 100 notes could be classified as GOC notes based on our tool and definitions. Except for palliative care specialists, high-quality documentation occurred infrequently in all specialties (palliative care 85.7%, critical care specialists 22.2%, hospitalists 20%, and IM residents 20%). Prognosis was both infrequently and poorly documented in all four groups, including palliative care. The remaining 31 notes were unrelated to GOC and commonly documented clinical updates, code status in isolation, or were left blank.

CONCLUSION: Using a novel assessment tool, we found that, with the general exception of palliative care specialists, GOC documentation was inconsistent and of low quality. This highlights the need to improve the consistency and quality of GOC documentation. We also submit that the definitions and examples outlined in our novel note assessment tool can double as a guide to teach providers how to improve the quality of their GOC documentation.