When to say when: Helping the team and family recognize when death is inevitable after pediatric bone marrow transplant

Abstract

Objectives * Gain an understanding of complex prognostication following complications of pediatric bone marrow transplant (BMT). * Gain skills for communicating the reality of poor likelihood of survival with a cure-oriented team and family following pediatric BMT. * Gain a better understanding of the ethical issues surrounding pediatric BMT patients receiving what may be considered inappropriate care at the end of life. Pediatric bone marrow transplantation is a unique setting in which patients and families tend to accept a high risk of extreme toxicities in exchange for a small chance at a cure. Even when the chance of cure seems remote and the morbidity is high, the tendency is to continue aggressive medical interventions with curative intent. In some cases, the nature of the complications and the patient’s overall condition render the chance for cure an unrealistic goal. In these cases, continued artificial life-sustaining therapy may be considered medically futile and may prolong suffering in a dying child. It can be extremely challenging for medical teams to identify the patients who may have reached a point of inevitable impending death and for whom continued cure-directed therapy is no longer indicated. It can be even more challenging for multiple disciplines to all agree that this point has been reached and achieve consensus among providers and consultants. Helping a family accept that their child’s cure-directed care will not achieve its desired result and assisting them in shifting goals to comfort and acceptance can be a far greater challenge. It is essential for palliative care providers who encounter this population to be familiar with the complications of pediatric bone marrow transplantation, as well as the evidence and clinical consensus required for prognostication. Expert communication skills can aid in aligning the medical team and family in order to establish realistic goals for the patient, minimize suffering, and avoid requests for nonbeneficial interventions. In addressing the complexities of pediatric bone marrow transplant patients with irreversible life-limiting complications nearing the end of life, critical aspects of prognostication, futility, and communication will be elucidated with broad applicability to the field as a whole.