Decision-Making

Home > Topics > Working with the Care Team > Decision-Making

You as a loving parent want to help and protect your child, which includes making decisions on their behalf. Over the course of their illness you will be prompted to consider some very difficult questions regarding clinical issues and your goals of care. Some of these will feel big and not easy to make. Others may seem more obvious to you. Optimally, you and the clinicians can work together to talk about options for managing the issues and together make decisions that work for your child and family. This process is commonly referred to as shared decision-making.

Your Team:

Palliative Care Clinician

A specialist whose aim is to improve the quality of life of their patients over the course of their illness regardless of stage, by relieving pain and other symptoms of that illness.

Psychologist

A mental health professional who uses therapy and other strategies to support coping and adjustment and treat concerns regarding social, emotional, or behavioral functioning.

Social Worker

A trained professional who works with people, groups and communities to help them better their lives.

Chaplain

A member of the clergy who is responsible for the religious needs of an organization and/or its constituents.

Spiritual Leader

An individual who leads and/or guides individuals or groups coping with life experience and challenges.

Primary Physician

A medical professional who practices general medicine.

Your child’s medical team will describe options and may recommend a course of treatment. A palliative specialist, psychologist, social worker, chaplain, spiritual leader or your child’s primary physician can provide a space for talking through how to make decisions with your goals of care at the center.

With medical complexity there are 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 an issue is affecting your child’s overall health and about how to proceed.

Conversations often produce many perspectives, interactions and reactions. Understanding different styles of communicating will help you feel more confident and effective in advocating for your child and family. The CPN guide “A Framework for Sharing Decision-Making with Your Child’s Clinicians” explains these styles and how to identify and understand your own preferences.

“Sometimes the fear of the uncertainty is because it is so vast…it’s so big, it feels like it could go in any possible direction…sometimes I find it helpful to be concrete, let’s talk about…the possible outcomes, which one of the outcomes would be unacceptable to you, and how does that inform what we are deciding today.”

– Kate N., clinician

Principles of Shared Decision-Making

Sometimes there is only one option that is likely to achieve the outcome you hope for. At these times decisions really can’t be shared.
In many 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,
sometimes there aren’t even five minutes. In this case you probably need to defer to
and trust the clinicians.

Decisions and Regret

It is helpful to remember that in most cases your choices may inform your child’s 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. The more you believe that you are making the best decisions you can with the information you have, the more self-compassion and the fewer moments of regret you are likely to feel.