Table 4 Proposal of a clinical approach to handling prognostic information in patients with severe ICH and “full code” status

First approach to the patient

Clarify code status. Be aware of your own biases. Especially in patients with large ICH volumes and/or IVH extension and/or hydrocephalus do not reflexively, consciously or subconsciously, provide sub-maximal care. Unless patients are at immediate risk of dying or fulfill criteria for brain death, provide maximal therapy, at least until contact with family is established and/or direct access to patient’s living will.

First family communication

Establish a relationship of trust and try to speak with close family members in person rather than on the phone if possible. Inquire whether a documented living will exists. Provide objective information. Avoid choice of words or implicit communication elements that suggest a likely clinical outcome (it is reasonable however to say that the disease is “severe” or “potentially life-threatening” if that is the case). Assess the family’s overall understanding of the situation, explain the disease, leave room for questions.

Score prognostication

Calculate the likelihood of unfavorable outcome using a recently validated prediction score. Be aware of the shortcomings of current prognostication tools, especially the lack of incorporation of worsening or improvement of the patient over time. Never make a definitive recommendation/decision solely based on the score results.

Second family communication

Use the score information to give the family a sense how patients with a similar disease severity have done in the past. Avoid confronting patients/families with numbers. In rare cases, if the educational level of family allows it, explain biases and shortcomings of our current prediction tools. Explain that aggressive therapy may make a relative outcome difference even in situations where moderate to severe disability is very likely.