As with the field of pediatric anesthesiology, the field of pediatric palliative care (PPC), when compared to its adult counterpart, is relatively young and long overdue. Like pediatric anesthesiologists, PPC clinicians care for children who experience complex medical conditions, chronic pain, and use of medical technology such as ventilators, tracheostomies, gastrostomy tubes, and even advanced cardiopulmonary support like ventricular assist devices (VADs). A study by Traynor et. al. demonstrated that 49.7% of children in the intensive care unit (ICU) underwent surgical procedures at the end of life (Pediatrics 2021;148:e2020047464). It is no surprise, then, that many pediatric anesthesiologists will have encountered questions about perioperative resuscitation status or felt the emotional weight of a parent when considering the anesthetic plan for a child with a life-limiting diagnosis.
In prior issues of the ASA Monitor, authors have touched upon the importance of palliative care and why early exposure in anesthesia residency is beneficial (ASA Monitor 2020;84:29). Pediatric anesthesiologists are uniquely positioned to have a role in pediatric pain and palliative care and have been at the forefront of creating sedation guidelines for refractory pain or agitation at the end of life (ASA Monitor 2021;85:41-2; J Palliat Med 2012;15:1082-90). This is the next frontier for anesthesiology – as one of the few medical specialties required to maintain proficiency in acute care of patients across the age spectrum (childhood, adolescence, obstetrics, and geriatrics) along with advanced pharmacotherapeutic and procedural knowledge. Anesthesiologists also can serve as advocates for quality-of-life and goal-concordant care. What is new in this article are the unique contributions an anesthesiologist can make when participating in the care of PPC patients and the overall benefit of a PPC mindset when considering diversity, equity, inclusion, justice, and belonging (DEIJB).
At its core, PPC delivers an integrative, holistic form of care to medically complex children and their families, offering a feasible solution for both professional challenges and clinical outcomes. Overarching patterns from existing studies suggest that PPC holds the potential to enhance the quality of life for children and young people and their parents, as it contributes to improved symptom control, influences the place of care, and increases the likelihood of achieving a preferred place of death (Arch Dis Child 2017;102:923-9). Previous studies have found that the provision of PPC was associated with fewer invasive interventions, fewer median days in the hospital, and even fewer ICU deaths (Pediatrics 2013;132:72-8). In addition to clinical outcomes, early exposure to both PPC and pediatric anesthesiology might be an answer to professional society concerns about burnout and the waning interest in pediatric subspecialties.
My firm belief in the inherent value of dignity and compassion is what drew me to pediatric palliative care. As a prospective medical student, I eagerly accepted an invitation from my boss at the time, a palliative care specialist, to shadow her for a week at a children's hospital. What unfolded during that week was transformative. My boss, a compassionate advocate, navigated what some might term “morbid” waters of palliative care with grace and expertise, supporting parents, collaborating with colleagues, and guiding residents through difficult conversations, all centered around the needs of the child. I saw families make agonizing decisions about their child's care, discussing everything from nutrition plans to life-support options. But amid the heartache, there were also moments of unexpected beauty – families celebrating holidays, creating mementos, and cherishing precious time together. Palliative care, I realized, was not just about managing pain or preparing for death; it was about empowering families to shape their own journey, finding solace and dignity in the midst of profound loss.
PPC patients also deserve comprehensive and inclusive care that embraces and accepts them completely. In 2020, the American Board of Anesthesiology (ABA) issued a public statement on DEIJB (asamonitor.pub/3TjF34v). These principles are increasingly important as we consider maternal mortality, preterm birth, gender-affirming care, and race-based differences in preoperative comorbidities and postoperative outcomes. Palliative care underscores the pillars of DEIJB and demands not only compassion, but also the cultural humility of health care providers. During my PPC week at the children's hospital, every day brought new encounters with families from diverse backgrounds, each grappling with their own mix of emotions – joy, sorrow, fear, and resilience. The complex nature of death has led to rituals that are vastly different across cultures and groups. Whether it demands that all members, even extended family, have a say in their loved one's outcomes, or that certain medical practices are not culturally appropriate, we must deeply immerse ourselves in a family's cultural framing to foster respect and understanding for their beliefs and practices. This also helps to remind us of the significance of spirituality in patient care, challenging us to think broadly, not just of measurable outcomes or medical practice, but of the spiritual needs of the patient and their families.
In an illuminating interview from Candrian et al., Esther, a widow, shared what it was like to watch her wife feel the weight of her sexual identity as a mitigator in receiving the care she needed at the end of her life (Gerontologist 2021;61:1197-201). Cathy felt forced back into the closet to minimize the animosity from her nurse, telling her life partner of 33 years: “Don't say anything about being married anymore.” Esther was crushed. Cathy and Esther's experience forces us to face the truth of how our subconscious biases show up, underscoring that a focus on DEIJB is paramount for all of our patients, especially those at the end of their lives. Perhaps a child has not yet chosen to share their sexual or gender identity with their parents. Maybe you encounter a child with parents like Esther and Cathy. As PPC providers, we must ensure that we see children for everything they are. Similarly, in the OR, by approaching a child's care with a PPC framework, an anesthesiologist can offer the support and understanding the child needs to navigate their palliative care journeys with dignity, cultivating a space that is nurturing of both the child and their parent's well-being.
The care of children with medical complexity who may be nearing the end of their lives requires the expertise of many professionals, with anesthesiologists playing a pivotal role. The collaboration between PPC clinicians and anesthesiologists, both within and outside of the OR, holds tremendous potential for mutual benefit. It is paramount that PPC is viewed beyond morbidity; it serves as a poignant reminder of the fundamental reasons many of us chose medicine – boundless compassion, unwavering humility, and a profound love for humanity that transcends race, culture, and creed.