The Case: a 24 yo M with progressive posterior fossa pilocystic astrocytoma presenting from Oncology clinic with altered mental status and respiratory failure whose father is resistant to medical interventions.

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Discussion: This case represents multiple challenges, mostly resulting from dealing with an altered adult patient with unclear advance directives and plan for end of life care.

When he initially presents, most fellows and attendings would start the patient on BiPAP for respiratory support. From the outset of the case, the father present with the patient is resistant to medical interventions. This begins the challenge of this is case in that he is not a child and not at cognitive baseline (despite father insisting that he’s fine). In this case, relying on his next of kin – both parents or spouse if he is married – is most appropriate.

Given the pull to treat this patient’s respiratory failure as well as evolving septic shock, but need to respect the families’ wishes, the majority would reach out to the Oncology team (ideally the patient’s primary oncologist who knows the family and patient) as well as palliative care. It was noted, however, that these teams may not respond immediately, or as quickly as desired when a response in the code bay is needed.

With families like this one, who are no strangers to the medical system but challenging medical interventions, many felt that it was necessary to get at why the father was resistant to intervention. (According to Dr. Jones, the family felt that the patient was fine and no interventions were necessary). Along with understanding the families’ beliefs around the current episode of care, it is also important to understand what discussion the family has had about end of life care and their desires for such. As Dr. Cahill mentioned, asking the family if they wish to allow natural death may have been an appropriate why to better elucidate their wishes.

Denouement: The patient’s primary oncologist was contacted and spoke directly with the family.  After discussing with PICU, Oncology and PANDAS the decision is made to discharge the patient home with Augmentin. Patient was successfully trialed off of BiPAP prior to being discharged home.  After discharge home the patient has been lost to follow up as numerous calls to family by Oncology were not returned. Patient died at home a few days later with family.

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