Hot Seat #136: 24 yo M with AMS and hypoxia
Posted on: September 5, 2019, by : Nate Jones
Nate Jones, MD, Children’s National Medical Center with Alex Rucker, MD, Children’s National Medical Center
CC: AMS/hypoxia
HPI: Patient is a 24 yo M with recurrent progressive posterior fossa pilocystic astrocytoma with VPS who presented to the ED as a code blue from the Oncology clinic. Patient was seen earlier for scheduled monthly carboplatin. During the infusion the patient complained of a headache and developed one episode of vomiting. Shortly after patient was noted by clinic staff to be more confused and slow to respond, father of the patient is adamant that the patient is at his baseline. Soon after he subsequently developed desaturations to the 80s requiring a non-rebreather requiring a Code Blue to be called.
ROS:
CONSTITUTIONAL: Denies fever, chills, recent illnesses
SKIN: Denies rash or hives
EYES: Denies pain, redness, discharge
ENMT: Denies sore throat or nasal congestion
RESPIRATORY: + SOB, denies cough, wheeze, stridor
CV: Denies CP, palpitations, syncope
GI: +Vomiting, denies abdominal pain, diarrhea
ALL/Immuno: +Impaired immunity
NEURO: +AMS, + HA, denies seizures
PMHx: Posterior fossa pilocystic astrocytoma, Hydrocephalus, CN 6,7,9 Palsies, Left hemiparesis, OSA on BiPAP at night and HTN
ALL: NKDA
PSurgHx: Tumor resection x3 and VPS placement with one revision
SHx: Patient currently lives at home with his parents.
PE: T 36.8 HR 78 RR 23 BP 121/79 100% on NRB
Gen: Cachectic
HEENT: NC, well healed sub occipital scars, shunt reservoir soft and compressible, Right pupil 2 mm and sluggish. Left eyelid fused
Skin: No rashes.
Neck: Supple with FROM, no LAD
CV: RRR, S1, S2 without m/r/g
Lung: Slow shallow breaths with tachypnea however BS clear bilaterally without w/r/r
Abd: Soft, NT/ND, +BS, No HSM or masses palpated
Neuro: Awake. Slow to respond to voice. Slow speech with intermittent dysarthria. Words are often incomprehensible. Strength is at baseline with 3/5 in the left upper and lower ext. 5/5 strength on the right. Reflexes 2+ throughout. Patient is non ambulatory
Labs and Imaging:
VBG: 7.1/99/19.6/45
Lactate: 4.29
Glucose: 90
WBC: 13.6/ Hgb: 13.8/ Hct 43/Plt 237
Head CT/Shunt Series: Intact shunt with interval increase in ventricle size form prior MRI
CXR: LLL opacity
A medical alert is called and the above labs/imaging were obtained. The family is updated with the results of the initial work up. Intubation is recommended given the patient’s mental status and hypercarbia. The father insists that the patient’s mental status is currently his baseline and refuses for the patient to be intubated. An advance directive is not available.
After further discussion with the father the decision is agreed upon to trial patient on BiPAP. Repeat VBG shows resolution of hypercarbia however mental status has not changed from prior exam, patient is still awake and responds to voice however patient is slow to respond.
Given the Head CT findings, neurosurgery is consulted who offered to tap the shunt. The father refuses for the shunt to be tapped citing that it is not necessary and that patient is at his baseline mental status.
The decision is made to respect the father’s wishes and not have the shunt tapped. PANDAS team was consulted. As you are waiting to hear back you are contacted by the nurse informs you that the patient is now febrile to 38.9 and persistently hypotensive with BP 70/40; a second medical alert is called. Blood pressure normalizes after 2 NS boluses, cultures are drawn, cefepime and vancomycin are given. The family is informed that the patient would need to be admitted to the PICU for further management.
The father refuses PICU admission citing that he would rather his son be discharged and cared for at home. However, the father states that he will not sign AMA paperwork over fear that the emergency room visit will not be covered by insurance.
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I would hope the oncology team would be involved and shed light on what has been presented to the family and help as go between in this case.
Wow, very tough ethical case! I am surprised that the father is so adamant that the patient does not receive care; however, there is no advanced directive in place. It is also unfortunate that the patient does not have the mental capacity to voice his own wishes, as he is of legal consenting age. I am unsure as to what I would do in this situation. Hopefully the Oncology and PANDAS teams were able to provide some guidance and insight. Very curious to hear how this case played out!
Wow, very difficult case. It does highlight the importance of anticipatory end of life care discussions (as routine) by our subspecialists (or primary care providers) for patients with chronic illess. Agree, that oncology team would hopefully be helpful to convey any decisions or prior discussions.
Thank you for sharing the case- definitely highlights the importance of advanced directives for patients with life limiting diagnoses. I agree with involving heme/onc and I hope the palliative care team was helpful, too. In my past experiences with cases like this, I’ve also found it very helpful to explore the father’s (or whoever is speaking on behalf of the patient) understanding of his son’s prognosis and what refusing care means for his son. From your case description, the patient seems to be at the point where goals of care can be distilled down to “quantity” vs “quality” of life. Definitely a tough conversation to have in the busy ED environment, but possibly (in the best scenario) one that also provides the patient and their family comfort as this patient approaches end of life.