The surrogate’s role is clearly to exercise “substituted judgment” – that is, to make decisions as the patient would make them using the patient’s values and preferences as previously expressed.
1. Before making a recommendation, make sure there is a common understanding of the patient’s condition and prognosis. Following this, the next step is to try to understand the patient’s goals in light of these medical facts.
2. Bring the patient’s “voice” into the decision process even if he/she cannot participate directly: If your father were sitting here with us, what would he say?
3. Whenever possible, frame the decision around the treatment goals (e.g. life prolongation, allowing a peaceful death) in light of the patient’s current condition, rather than focusing on very specific treatments.
4. Do not make the surrogate feel that they are taking full responsibility for medical decisions, especially those which may result in the death of their loved one. Once you have a sense of the patient’s goals in light of his/her medical condition, offer to make a recommendation that reflects those goals.
5. Remember that we are talking about the potential death of the surrogate’s loved one. Emotions – sadness, frustration and guilt – are normal. Use previously discussed emotion management skills to acknowledge, legitimize, empathize and support the family’s emotional response.
6. Do not argue over the facts; repeating the facts over and over again is not likely to be effective. When the surrogate says He is a fighter, acknowledge that he is and has really fought hard. The surrogate saying I want you to do everything is as much a sign of emotional desperation as it is a factual request. Respond with empathy: It seems this is really hard for you. If hope for a miracle is expressed, it is appropriate to acknowledge that you hope for an unanticipated recovery as well, but that a miracle is truly what it would take at this point.
7. Rather than reiterating what medicine cannot do, consider using “I wish” statements to keep you in touch with the surrogate’s feelings, while simultaneously expressing medicine’s limitations.
8. Recognize the importance of time and support for surrogates to do their necessary grief-work. Offer counseling services, either informal through the work of a palliative care team, or more formal resources available at your institution. Bring together your clinical care team and strategize potential resources for support such as chaplaincy, social services, psychology, palliative care or ethics consultation.
Adapted from Weissman DE, Quill TE and Arnold R. Palliative Care Network of Wisconsin. Fast facts and concepts #226. Helping surrogates make decisions. Internet. Accessed on June 21, 2016.