Pediatric Anesthesiology and Children who Die
Ethan L. Sanford MD, Justin L. Lockman MD MSEd, M Concetta Lupa MD, Alan Jay Schwartz MD MSEd
Original Article:
Linebarger JS, Johnson V, Boss RD; SECTION ON HOSPICE AND PALLIATIVE MEDICINE; Linebarger JS, Collura CA, Humphrey LM, Miller EG, Williams CSP, Rholl E, Ajayi T, Lord B, McCarty CL. Guidance for Pediatric End-of-Life Care. Pediatrics. 2022 May 1;149(5):e2022057011. doi: 10.1542/peds.2022-057011. PMID: 35490287.
Fortunately, unexpected intraoperative death is rare in pediatric anesthesia – though still too common! More often, we find ourselves entrusted to care for sick children who are either profoundly critically ill or are receiving end-of-life care. Sometimes we know (or at least suspect) these children may die soon, sometimes their parents know, and occasionally the child does as well. When we talk about our careers with others, we commonly hear about the sadness of children dying and how working with them must strain our mental health. Quite the contrary, we are comfortable saying that caring for children at the end-of-life and the families that grieve them is a privilege and an honor, adds meaning to our work, and makes us proud when done well. Those children bless our consciousness with an understanding of the suffering, resilience, hope, loss, longing, and love that define human experience. We hope today’s PAAD, “Guidance for Pediatric End-of-Life Care”,1 inspires consideration of the fulfillment that can be found in the sacred practice of caring for children who die.
Death is not a homogenous process. Today’s article notes that of the approximately 45,000 annual U.S. deaths of children under age 19, about 20% die or are pronounced dead in an emergency department, often under sudden circumstances. Most, however, “die in hospitals after withholding, not escalating, or withdrawing life-sustaining treatments.” Of these, many have diagnoses such as cancer, trauma, infection, or serious congenital diseases that lead to critical illness and the need for many diagnostic and operative procedures. Additionally, the growing population of children with medical complexity who are at elevated risk of childhood death require frequent anesthetics. The article notes differing patterns of health prior to death including “1) steady decline with cumulative complications, 2) acute decline followed by relative stability, 3) fluctuating health status (repeatedly “defying the odds”).” These heterogenous populations and processes create variance in family understanding and preparation for end-of-life, and certainly there is no “one size fits all” approach for their healthcare teams. For the pediatric anesthesiologist, understanding the path that led a child and family to our operating room helps inform the family’s concerns, values, and goals – which leads to improved anticipation and response to clinical scenarios.
In the abbreviated forum of perioperative care, recognition and empathetic acknowledgment of a child and family’s suffering through a brief, genuine expression of sorrow may help align us with families. Most families appreciate an acknowledgement that the circumstances are terrible. It is okay to be human in these moments. We can feel and express sorrow while demonstrating expertise that comforts a family. After gauging responses to our introduction, we may engage in learning more about a family versus transitioning to addressing the logistics of anesthetic care. The guidelines wisely advise straightforward information with full disclosure to help truly inform a family, offering information that is consistent (i.e., the anesthetic plan meets the medical/surgical needs), respecting a family’s unique knowledge of their child, allowing time for questions, and allowing access to all medical team members to support recommendations.
Core to this focused, critical discussion is determining what the family and child want. Treatment imperative is the obligation to pursue treatment at all stages of disease.2 Often, we become entangled in treatment imperative inertia leading to a seemingly endless stream of progressively more invasive management which may be disconnected from what the medical team and/or family want. Anesthesiologists may be the first to recognize these scenarios. Pausing to discuss care with the proceduralist or treating team is prudent to clarify and ensure alignment with families. We should not view ourselves as bystanders in these encounters while also not obstructing plans that have been thoughtfully arranged.
Alternatively, families may pursue anesthetic care for palliative procedures at the end-of-life after do not attempt resuscitation (DNAR) orders are established. In the past, surgeons and anesthesiologists advocated for automatic suspension of DNAR (or simply do not intubate) orders. These mandatory suspensions are confusing, oppose patient autonomy, and may even coerce patients or families into abandoning treatments which could help them. Thankfully, more recent recommendations advocate discussing together with families the appropriateness of DNAR orders to establish shared expectations and decision making for procedure specific DNAR plans.3 These may take the form of 1) goal-directed approach wherein understanding of goals, values, and preferences guide perianesthetic resuscitation or 2) procedure-directed approach wherein specific interventions which may be required are discussed with plans established beforehand. Elements of each approach are often needed. We find that often once a family or patient’s goals are established it becomes more plausible to determine which individual therapies (compressions, defibrillation, chest tube, vasoactives, ect) are aligned with those goals in the context perioperative care.
Obviously, these approaches demand greater effort and investment, take time and emotional energy, and may create challenging discussions with some families. Anesthesiologists may fear legal ramifications. Documentation of conversations regarding joint decisions made with families should not and is not known to create unprotected circumstances.4 Our view is that none of those fears or demands should prevent physicians from engaging families in decision making regarding their child’s end-of-life care. An alternative approach risks both poor medical care and a negative/unfavorable view of care by families.
When we decided to become physicians, we agreed to accompany people through disease, suffering, and sometimes death. Caring for a dying child is a unique part of our careers. Often, funeral homes and graveyards have demarcated areas where children are memorialized, appropriately recognizing the unnatural and terrible occurrence. These memorials sometimes recognize the loving care a child experiences from medical teams. When we stop to consider those nurses, therapists, volunteers, and physicians, we are grateful to count ourselves among this empathetic community bonded by loving and suffering with children and their families. In a perfect world, there would be no need for a children’s hospital. In the meantime, we should cheer whenever a child recovers and mourn when they do not but find meaning and perspective from both.
The principles expressed above may not be part of the curriculum for our trainees or continuing education of our colleagues. We hope you consider remedying this if it is absent in your system. We also encourage you to read the references below in their entirety so you are more prepared the next time this situation presents itself in your operating room. Send your thoughts and comments to Myron who will publish in a Friday readers response
References
1. Linebarger JS, Johnson V, Boss RD, et al. Guidance for Pediatric End-of-Life Care. Pediatrics 2022;149(5). DOI: 10.1542/peds.2022-057011.
2. Tate A. Death and the treatment imperative: Decision-making in late-stage cancer. Soc Sci Med 2022;306:115129. DOI: 10.1016/j.socscimed.2022.115129.
3. Fallat ME, Hardy C, Section On S, Section On A, Pain M, Committee On B. Interpretation of Do Not Attempt Resuscitation Orders for Children Requiring Anesthesia and Surgery. Pediatrics 2018;141(5). DOI: 10.1542/peds.2018-0598.
4. Waisel D, Jackson S, Fine P. Should do-not-resuscitate orders be suspended for surgical cases? Curr Opin Anaesthesiol 2003;16(2):209-13. DOI: 10.1097/00001503-200304000-00016.