Where do families turn? Ethical dilemmas in the care of chronically critically Ill children.

Advancements in early diagnosis and novel treatments for children with complex and chronic needs have improved their chances of survival. But many survive with complex medical needs and ongoing medical management in the setting of prognostic uncertainty. Their medical care relies more and more on preference-sensitive decisions, requiring medical team and family engagement in ethically challenging situations. Many families are unprepared as they face these ethical challenges and struggle to access relevant ethical resources. In this paper, Timmy's narrative, situated in the context of what is known about ethical challenges in the care of children with chronic critical illness (CCI), serves as a case study of the gap in available ethical resources to guide families in their approach to difficult decision making for children with significant medical complexity and CCI. Our author group, inclusive of parents of children with complex medical needs and medical professionals, identifies domains of ethical challenges facing families of children with CCI and we highlight the development of family/caregiver-oriented ethics resources as an essential expansion of pediatric bioethics.

Lung Cancer Survivorship: Physical, Social, Emotional, and Medical Needs of NSCLC Survivors.

BACKGROUND: Newer therapies prolong survival for patients with lung cancer. Beyond extending survival, the needs of lung cancer (LC) survivors are poorly described. METHODS: We conducted a single-institution needs assessment survey of LC survivors alive ≥1 year from diagnosis. Needs were rated on a 5-point Likert scale for 4 domains (physical, social, emotional, and medical). Multiple regression models identified demographic or treatment characteristics associated with more needs in each category. A subset analysis of survivors with metastatic LC was performed. RESULTS: Of 360 patients approached, 235 surveys were completed. Among completed survey respondents, the median age was 69 years; most were female (62%), married (71%), and White (74%); and 41% had stage IV cancer. Finding support resources (34%) was the most common medical need. Fatigue (70%), sleep disturbance (60%), memory and concentration (57.5%), weakness (54%), and trouble breathing (51%) were physical needs affecting more than half of respondents. The most common social need was managing daily activities (42%). Emotional needs were highly prevalent, with 79% of respondents reporting a fear of recurrence and 74.5% reporting living with uncertainty. Multiple regression analysis identified that receipt of multiple lines of systemic therapy and lower household income were associated with higher physical and social needs. Younger age was associated with having a greater number of social and emotional needs. Similar results were found in the subset of survivors with metastatic disease at diagnosis. CONCLUSIONS: The needs of LC survivors are diverse across multiple domains. Several clinical and demographic factors are independently associated with higher numbers of patient-reported needs. Our study identifies critical gaps in survivorship care for LC survivors with all stages of disease and highlights areas of future intervention.

Retrograde Cricopharyngeal Dysfunction: A Review.

Retrograde cricopharyngeal dysfunction (RCPD), also referred to as retrograde cricopharyngeus dysfunction, is a condition characterized by the inability to burp. The pathophysiology of this condition is thought to result from failure of cricopharyngeal sphincter relaxation during periods of esophageal distension, which leads to patients' bothersome symptoms. RCPD negatively impacts patients' quality of life and is associated with bloating, gurgling, avoidance of carbonation, self-imposed dietary and lifestyle changes designed to minimize discomfort, and flatulence. Complaints often start during adolescence, and many patients search for a diagnosis for years before obtaining treatment. A recent increase in awareness through patient-led social media discussion boards describing the 'no burp' syndrome is leading to an increasing incidence of presentations, often with patients making a self-diagnosis. The increased incidence of RCPD is fueling a larger case series investigating treatment options and outcomes. In this review, we discuss what is known about the pathophysiology of this condition, the otolaryngologic perspective on diagnosis and treatment, the patients' lived experience of this condition, and the influence of social media on RCPD.

Experiences of Patients Living with Retrograde Cricopharyngeal Dysfunction.

OBJECTIVES: Retrograde cricopharyngeal dysfunction (RCPD) is a newly described condition resulting from failure of cricopharyngeal sphincter relaxation during periods of esophageal distension that results in the inability to burp. Patients' perspectives on symptom experiences, barriers to care, and treatment benefits were investigated. STUDY DESIGN: Qualitative semi-structured interviews were conducted with patients diagnosed with RCPD who had been treated with botulinum toxin injection into the cricopharyngeus muscle. Interview questions centered on their experience living with RCPD. Conventional content analysis was performed on interview transcripts. RESULTS: Thematic saturation was reached with 13 participants. All participants were diagnosed with RCPD by an otolaryngologist and underwent botulinum toxin injection into the cricopharyngeus muscle with or without dilation of the upper esophageal sphincter in the operating room. Participants described having no memories of ever being able to burp, and all started experiencing RCPD symptoms during adolescence. Patients with RCPD experienced increased social isolation, lost productivity, and worsened mental health. Unanimously, participants first learned about RCPD on social media. All patients were seen by physicians in non-otolaryngology specialties regarding their symptoms prior to learning about their RCPD diagnosis and undergoing treatment by an otolaryngologist. Dilation and chemodenervation resulted in complete resolution of RCPD symptoms for 84.6% of participants. Participants emphasized a desire for more health providers to learn about RCPD and the impact it has on quality-of-life. CONCLUSION(S): The lived experience of patients with RCPD significantly impacts quality of life and is often met with diagnostic barriers in the medical community. Although social media plays a significant role in increasing awareness of RCPD, physician education about the impact of RCPD is essential to improve diagnosis and treatment. LEVEL OF EVIDENCE: 4 Laryngoscope, 134:2136-2143, 2024.

Costs of Neonatal Medical Complexity: Impact on New Parent Stress and Decision-Making.

OBJECTIVE: Parents of children with medical complexity experience substantial financial burdens. It is unclear how neonatal intensive care unit (NICU) clinicians prepare new parents of medically complex infants for this reality. This study explored new parent awareness of health care costs, desire to discuss costs with clinicians, and impact of costs on parents' medical decision-making. STUDY DESIGN: The study design comprised semistructured interviews and surveys of parents of infants with medical complexity currently or previously in a NICU. Conventional content analysis was performed on interview transcripts, and descriptive analyses were applied to surveys. RESULTS: Thematic saturation was reached with 27 families (15 NICU families and 12 post-NICU families) of diverse race/ethnicity/education/household income. Most were worried about their infants' current/future medical expenses and approximately half wanted to discuss finances with clinicians, only one parent had. While finances were not part of most parent's NICU decision-making, some later regretted this and wished cost had been incorporated into treatment choices. The family desire to discuss costs did not vary by family financial status. Parents described their infant's health care costs as: "We are drowning"; and "We'll never pay it off." CONCLUSION: Most parents were worried about current and future medical expenses related to their infant's evolving medical complexity. Many wanted to discuss costs with clinicians; almost none had. NICU clinicians should prepare families for the future financial realities of pediatric medical complexity. KEY POINTS: · Many families want to discuss costs with NICU clinicians.. · Some families want costs to be a part of medical decisions.. · Few families currently discuss costs with NICU providers..