Editor’s Note: Patient Worthy is proud to share this from our friends at the Courageous Parents Network.

Throughout our lives we are faced with decisions of many kinds. Some involve complex issues and require thoughtful deliberation; others are more routine with relatively low stakes. In the context of serious illness, decisions about clinical care and treatment goals often feel particularly weighty.

Sometimes the right course of action may appear straightforward. At other times, especially when there doesn’t seem to be a “right” answer, decision-making can be more difficult. Ideally, you and your healthcare team can engage in open conversation to explore available options, clarify goals, and make decisions collaboratively. This process is known as shared decision-making. It is a model that values the partnership between patients, families, and clinicians.

Principles of Shared Decision-Making
With medical complexity there are often multiple clinical issues to navigate. You may find yourself working with more than one clinician, or team of clinicians, possibly with several at one time. Wherever there is uncertainty there may be differences of opinion between clinicians, or between you and a clinician, about how to interpret the situation and determine the most appropriate course of action.

These conversations often produce many perspectives, interactions and reactions. There are always practical considerations, but the emotional burden of decision-making also needs to be considered. You may at times feel that you need more information to inform your decision, so that you can be confident that you are making the best possible decisions under the circumstances. If so, you can ask for help in identifying all the issues to consider and talking them through.

It is helpful to understand these principles of shared decision-making:

• Sometimes there is only one medically appropriate option. In such cases, decisions are less about choice and more about clinical necessity, and the care team will lead the recommendation.
• In some cases, there are several potential options to consider, and different families will make different choices.

• Sometimes there is no clear path to the hoped-for outcome. In this case, moving forward depends on your goals for your child and family.

• In most cases you can ask for time to decide, even if it’s only five minutes. However, there may be situations that require immediate action. In such cases, trust in the clinical team is essential.

Decisions and Regret

In most cases your choices may inform the illness journey, but they do not always determine the outcome. There are no crystal balls or other ways of predicting what outcome would have occurred with a different choice. Again: the more you believe that you are making the best decisions you can with the information you have, the more self-compassion you will experience and the fewer moments of regret you are likely to feel.