I found this article quite insightful. (Joseph-Williams N, Edwards A, Elwyn G: Power imbalance prevents shared decision making. Bmj 2014, 348).
Shared decision making is a buzz-word (buzz-phrase I guess) to describe how to pursue good decision making with patients (or in our case parents). The general idea being that the physicians have the knowledge, the training and the insight to know what options are appropriate, and the risks and benefits of each option. The patient has their values, their opinions, and their preferences, and by putting these aspects together we can come to a decision which is in the best interests of the patient and consistent with their values.
This new article is an analysis piece based on the authors systematic review of the literature of barriers to shared decision-making, as a result of which the authors conclude:
Many patients currently feel they can’t participate in shared decision making
Power imbalances in the clinical encounter are a key barrier even if patients have the required knowledge
Patients need to know that their input is valued and won’t damage their care
The attitudes of both patients and clinicians need to change to enable shared decision making
I think the power imbalance in neonatology maybe even more important, many parents do not feel free to express their wishes, their doubts, their hopes, because of the different status of the persons involved, but also because parents are often completely lost at the start of the hospitalisation. It is an experience so far outside of what they have lived before that few have any relevant knowledge when we first meet them and the ‘power imbalance’ is really marked. What to do about this? How do we empower parents, and help them recognize the importance of their part in the shared decisions?