Who Decides....Shared Decision Making

The following excerpts from your colleagues in nursing and RT illustrate an essential aspect of decisions in the NICU, the concept of shared decision making. Read the excerpts and then continue in this module for more information.

“I think sometimes parents are too afraid to say what they really want and are waiting for us to lead the way in those difficult conversations. Providers need to constantly be bringing up with every big surgical decision, that the option to not proceed and to redirect care is always an option in a scenario like this. I felt in many family meetings, it was presented to the parents as “this is what we need to do to save your baby” and there was a lack of “these are all the options we have right now.”

“Every infant deserves the right to a quality of life. I believe that the neonatology data base is large enough to begin development of a guideline/protocol that would allow all physicians to provide parents with a realistic picture of what the developmental expectations will be for their child especially in those instances where the likelihood of profound developmental delays is most likely.”

“Parents deserve the right to make an informed decision on how far and how much they want done to and for their infant as they will be the ones taking that child home. But it is easy to forget that parents of critically ill infants do not hear language in the way that “normal” people do. When someone says, “We can do this test, procedure, process but it may or may not be beneficial” what the parent hears is “If we do this test, procedure, process, my baby will be normal”. I realize that it is hard for physicians who must have this conversation to be compassionately blunt, but I think you do the parents a disservice if you are not.”

“Per anecdotal commentary, parents received significant pushback for this choice as overheard by bedside caregivers most of whom felt that their choice while difficult, was probably the kindest.”

In the NICU and all parts of the hospital, shared decision-making (SDM) is the gold standard for decisions. Just what is SDM? This video explains the concept. Read on after the video for more information about SDM.

SDM is guided by the notion that it accepts a person's ability to achieve self-determination. Self-determination refers to a person's ability to rule their own life. This definition sounds similar to autonomy which we've already discussed. Self-determination and SDM recognize the need to support decision-making autonomy but acknowledges the interdependence on others.

On the point of autonomy, we refer to the concept of relational autonomy when discussing self-determination. Relational autonomy acknowledges that we are not entirely free in our decisions, meaning our decisions relate to interpersonal relationships. Relational autonomy and self-determination bring decision-makers from the concept of informed consent to the idea of informed preferences, as discussed in the video.

Informed preferences are crucial because they assume decisions would be better understood by decision makers, based on more accurate predictions, and more consistent with the patient's preferences. Informed preferences and SDM aim to confer agency to decision-makers. Agency refers to the capacity of an individual to make their own free choices.

Patients achieve agency by receiving information and by having support in the decision-making process. On the journey to agency, patients must receive quality information. The importance of quality information cannot be understated because, without good information, patients will be unable to access what is most important to them accurately.

To support patients in the decision-making process, providers can explore their reactions to the information presented. A simple model to follow SDM contains three key steps. These steps are choice talk, options talk, and decision talk.

In the NICU, parents discuss a care plan with those at the bedside, including doctors and nurses. The decision made by parents are exceedingly complex, and there is rarely one good option. Please recall the video about moral dilemmas.

In the NICU setting, the parents typically seek initial guidance from neonatologists and other specialists, but most parents also want to ensure their choices align with their preferences. This fact highlights the notion that parents should collaboratively make decisions with the best available evidence. The problem with evidence is that data are often uncertain and limited, and healthcare practitioners are imperfect at predicting outcomes.

When the data are imperfect, parents should have the power to make decisions with the healthcare staff's support. This support can come from doctors, nurses, RT, OT, and SW, amongst others. It is essential to elicit parent values when providing support with careful attention not to overwhelm them. Methods to support families through SDM include:

• Clear and consistent communication.

• Communication using the best available data.

• The use of interdisciplinary family meetings.

References:

Elwyn G, et al. Shared decision making: A model for clinical practice. JGIM. 2012;27(10):1361-1367

Soltys F, et al. The importance of shared decision making in the neonatal intensive care unit. J Perinatol. 2020;40:504-509

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