Prognostic and Goals-of-Care Communication in the PICU: A Systematic Review.

OBJECTIVE: Admission to the PICU may result in substantial short- and long-term morbidity for survivors and their families. Engaging caregivers in discussion of prognosis is challenging for PICU clinicians. We sought to summarize the literature on prognostic, goals-of-care conversations (PGOCCs) in the PICU in order to establish current evidence-based practice, highlight knowledge gaps, and identify future directions. DATA SOURCES: PubMed (MEDLINE and PubMed Central), EMBASE, CINAHL, PsycINFO, and Scopus. STUDY SELECTION: We reviewed published articles (2001-2022) that examined six themes within PGOCC contextualized to the PICU: 1) caregiver perspectives, 2) clinician perspectives, 3) documentation patterns, 4) communication skills training for clinicians, 5) family conferences, and 6) prospective interventions to improve caregiver-clinician communication. DATA EXTRACTION: Two reviewers independently assessed eligibility using Preferred Reporting Items for Systematic Reviews and Meta-Analysis methodology. DATA SYNTHESIS: Of 1,420 publications screened, 65 met criteria for inclusion with several key themes identified. Parent and clinician perspectives highlighted the need for clear, timely, and empathetic prognostic communication. Communication skills training programs are evaluated by a participant's self-perceived improvement. Caregiver and clinician views on quality of family meetings may be discordant. Documentation of PGOCCs is inconsistent and most likely to occur shortly before death. Only two prospective interventions to improve caregiver-clinician communication in the PICU have been reported. The currently available studies reflect an overrepresentation of bereaved White, English-speaking caregivers of children with known chronic conditions. CONCLUSIONS: Future research should identify evidence-based communication practices that enhance caregiver-clinician PGOCC in the PICU and address: 1) caregiver and clinician perspectives of underserved and limited English proficiency populations, 2) inclusion of caregivers who are not physically present at the bedside, 3) standardized communication training programs with broader multidisciplinary staff inclusion, 4) improved design of patient and caregiver educational materials, 5) the development of pediatric decision aids, and 6) inclusion of long-term post-PICU outcomes as a measure for PGOCC interventions.

Parent and Physician Report of Discussions About Prognosis for Critically Ill Children.

OBJECTIVES: Parents value clear communication with PICU clinicians about possible patient and family outcomes (prognostic conversations). We describe PICU parent and attending physician reports and agreement regarding the occurrence of prognostic conversations. We queried parents and physicians about prognostic conversation content, which healthcare providers had prognostic conversations, and whether parents wanted more prognostic information. DESIGN: Prospective cross-sectional survey study. SETTING: University-based 40-bed PICU. PARTICIPANTS: Parents and attending physicians of PICU patients with multiple organ dysfunction within 24 hours of PICU admission. INTERVENTIONS: Surveys administered to parents and attending PICU physicians 5-10 days after PICU admission. MEASUREMENTS AND MAIN RESULTS: Surveys asked parents and physicians to report the occurrence of prognostic conversations related to PICU length of stay, risk of PICU mortality, and anticipated post-PICU physical, neurologic, and psychologic morbidities for patients and post-PICU psychologic morbidities for parents. Of 101 participants, 87 parents and 83 physicians reported having prognostic conversations. Overall concordance between parents and physicians was fair (Kappa = 0.22). Parents and physicians most commonly reported prognostic conversations about PICU length of stay (67.3% and 63.3%, respectively) and patient post-PICU physical morbidity (n = 48; 48.5% and n = 45; 44.5% respectively). Conversations reported less often by parents and physicians were about patient post-PICU psychologic morbidity (n = 13; 12.9% and n = 20; 19.8%, respectively). Per parent report, bedside nurses and physicians provided most prognostic information. Chaplains (n = 14; 50%) and social workers (n = 17; 60%) were more involved in conversations regarding parent psychologic morbidities. Most commonly, parents requested more information about length of stay and their child's physical morbidities. Parents less frequently wanted information about their own psychologic morbidities. CONCLUSIONS: Most parents and physicians report having prognostic conversations, primarily about length of stay and post-ICU physical morbidities. Concordance between parents and physicians is suboptimal. Future studies should evaluate prognostic conversations at other timepoints, how information is delivered, and how these conversations impact the PICU experience.

Ethical and legal considerations related to disorders of consciousness.

PURPOSE OF REVIEW: The purpose of this review is to describe ethical and legal issues that arise in the management of patients with disorders of consciousness ranging from the minimally conscious state to the coma state, as well as brain death. RECENT FINDINGS: The recent literature highlights dilemmas created by diagnostic and prognostic uncertainties in patients with disorders of consciousness. The discussion also reveals the challenges experienced by the disability community, which includes individuals with severe brain injury who are classified as having a disorder of consciousness. We review current guidelines for management of patients with disorders of consciousness including discussions around diagnosis, prognosis, consideration of neuropalliation, and decisions around life sustaining medical treatment. SUMMARY: In the setting of uncertainty, this review describes the utility of applying a disability rights perspective and shared decision-making process to approach medical decision-making for patients with disorders of consciousness. We outline approaches to identifying surrogate decision makers, standards for decision-making and decision-making processes, specifically addressing the concept of futility as a less useful framework for making decisions. We also highlight special considerations for research, innovative and controversial care, brain death, organ donation, and child abuse and neglect.

Good Enough.

In this narrative medicine essay, a pediatric critical care physician mulls a discussion about a patient's status with a male colleague in front of her all-female medical team, a discussion that led her to question herself until she concludes that she can't be all things to all people at all times.

Made With Love in a Petri Dish.

In this narrative medicine essay, a pediatric critical care physician imagines the future discussion with her son about his conception and birth and recounts how she and her husband decided on expanding their family via gestational surrogacy.

Prognostic Conversations Between Parents and Physicians in the Pediatric Intensive Care Unit.

BACKGROUND: Up to 80% of pediatric intensive care unit (PICU) patients experience new morbidities upon discharge. Patients and families rely on clear communication to prepare for post-PICU morbidities. METHODS: Surveys were given at PICU discharge to parents and attending physicians of patients who developed multi-organ dysfunction within 24 hours of PICU admission and whose parents completed an initial survey 5 to 10 days after PICU admission. Participants were asked about prognostic conversations regarding PICU mortality; patient post-PICU physical, cognitive, and psychological morbidities; and parent post-PICU psychological morbidities. Parents also indicated whether they wanted more prognostic information. RESULTS: Forty-nine parents and 20 PICU attending physicians completed surveys for 49 patients. Thirty parent (61%) and 29 physician (59%) surveys reported participating in any prognostic conversations. Concordance between parents and physicians about prognostic conversations was slight (κ = 0.19). Parent (n = 22; 45%) and physician (n = 23; 47%) surveys most commonly reported prognostic conversations about post-PICU physical morbidities. Parents less commonly reported conversations about post-PICU cognitive morbidities (n = 10; 20%). According to parents, bedside nurses and physicians provided most prognostic information; social workers (54%) most commonly discussed parent psychological morbidities. Twenty-six parents (53%) requested more prognostic information. CONCLUSIONS: Most parents and physicians reported having prognostic conversations, primarily about post-PICU physical morbidities. More than half of parents wanted more information about potential post-PICU morbidities. More research is needed to understand how and when medical professionals should have prognostic conversations with parents.

A pilot project: handwashing educational intervention decreases incidence of respiratory and diarrheal illnesses in a rural Malawi orphanage.

Children who live in orphanages represent a population particularly vulnerable to transmissible diseases. Handwashing interventions have proven efficacy for reducing the rate of transmission of common infectious diseases. Few studies have analyzed the delivery of health interventions for children in orphanages in sub-Saharan Africa. To address this gap, we conducted an ecological assessment and piloted a handwashing intervention in an orphanage in rural Malawi, focusing on caregiver knowledge and behaviors, child handwashing behaviors, and disease incidence. A secondary study aim was to demonstrate program feasibility for a future randomized controlled trial. Orphanage caregivers participated in a three-module educational intervention on handwashing based on WHO recommendations and workshops on how to teach the curriculum to children. Seventeen orphanage caregivers and 65 children were monitored for handwashing behavior and child disease incidence. Friedman's tests were conducted to compare changes in caregiver knowledge and behaviors. Child handwashing behaviors and surveillance of child disease incidence were measured pre- and post-intervention. There were significant increases in caregiver hand hygiene knowledge. At six months post-intervention, handwashing with soap increased significantly among caregivers (p < 0.001) and was observed in children. The incidence of acute respiratory infections decreased from 30% to 6% post-intervention, resulting in an 80% decrease. The incidence of diarrhea decreased from 9.2% to 6.2% post-intervention, resulting in a 33% decrease. A brief educational intervention may improve handwashing knowledge and behaviors and help to decrease the incidence of common infectious diseases in an orphanage in rural Malawi. In addition, the caregiver uptake of the intervention demonstrated feasibility for future studies.

In-stent thrombosis and stenosis after neck-remodeling device-assisted coil embolization of intracranial aneurysms.

BACKGROUND: Intrinsic thrombosis and stenosis are complications associated with the use of neck-remodeling devices in the treatment of intracranial aneurysms. OBJECTIVE: To examine the technical and anatomic factors that predict short- and long-term stent patency. METHODS: We undertook a retrospective review of 161 patients who underwent coil embolization of 168 ruptured and unruptured aneurysms assisted by the use of a neck-remodeling device. One hundred twenty-seven patients had catheter-based angiographic follow-up to evaluate 133 stent-coil constructs (mean, 15.4 months; median, 12.7 months). The technique of microcatheter jailing was used in a majority of patients; nonstandard stent configurations were also used. RESULTS: Clinical follow-up for all patients who had catheter-based angiograms demonstrated that among 133 stent constructs, a total of 9 (6.8%) had an in-stent event: 6 acute or subacute thrombosis (4.5%) and 3 delayed stenosis or occlusion (2.3%). Seven of these constructs were associated with a symptomatic event (5.3%). A significantly higher rate of in-stent events was seen with the use of constructs to treat anterior communicating artery aneurysms. When all patients are considered, including those who did not receive catheter-based follow-up imaging, 2 of 168 procedures (1.2%) resulted in the death of a patient, and procedural morbidity was 14.9%. CONCLUSION: From these results and those in the published literature, in-stent complication rates are low in carefully selected patients. The use of dual antiplatelet therapy, sensitivity assays, and glycoprotein IIb/IIIa inhibitors may decrease the rate of acute and chronic in-stent complications.