As a parent, you have hopes for your child (or children) and a vision for the life you hope they will have and that you hope to provide for them. Now what you find yourself hoping for will likely shift. Certain things will matter less, and other things will matter more.

At diagnosis, especially, there is so much to learn and absorb. It is natural to focus on finding a treatment or cure for your child’s condition, and you will want to find the specialists who will help you with this. You also will want to consider what is immediately happening, including addressing any pain or other suffering that your child may be experiencing. Learning the hospital “system” is also a priority, as is familiarizing yourself with social service systems of care.


At the same time, there is a practical need to establish goals and direction for your child’s care. 

Articulating your goals of care for your child can feel impossible at the beginning as you absorb the diagnosis and search for therapies to treat it. It can feel scary to anticipate what lies ahead. But you need not be alone in establishing your goals or revisiting them as you feel you need to. You can involve medical team, members of your family, spiritual leaders, school team or other trusted advisors in goals of care conversations.

The following section, Navigating, offers helpful ways to do this courageous work.

Caring for a child (or teen or adult) with a serious medical condition means confronting a wide range of symptoms and interventions. These experiences will prompt you to consider what you want for your child and family. The care team may also be checking in with you about this.

It is helpful to have thought in advance about what you want for your child during a time of calm, when things are stable. Wellness visits are a good time to have these discussions. Just after a change in your child’s baseline is another important time to check in.

If the care team has not specifically asked about your goals, you might want to start that conversation yourself. You might worry or assume that goals of care conversations are about end-of-life decisions—but this is not so. As with any child, your goals of care for this child are informed by the love and hope you have for their life to be as good as possible, whatever that means to you and your family. These conversations are meant to help guide the choices you are making. Being aware of what you are thinking and feeling, and sharing your perspective with the care team, will help you feel more confident in your role as your child’s advocate. Most families find that being open and direct allows the clinicians to provide better guidance about what to expect.

As you consider your goals, it may be helpful to think about what a good day looks like, and what parts of that you want to keep nurturing. What activities does your child enjoy most? Where is your child most comfortable? Do you (or your child) feel more confident receiving care at the hospital, or do you want to avoid the hospital? Are there religious or spiritual ideas that guide your thinking?

Some additional questions:

• What is your understanding of your child’s condition now? How much information do you want or need about their prognosis?
• How do you want to receive information? 
• Is there anything that the care team can do or tell you that will reassure you, comfort you, make you feel more confident?
• If your child’s condition declines, how will you consider the treatment options? For example, will you prioritize your child’s comfort over pursuing interventions for the possibility of gaining more time?
• Are there treatments or interventions that you would never allow?
• Who or what will help you make decisions now or in the future?

Your answers to care goals questions may shift over time, but it is helpful to begin to reflect on them. Family members or friends may have their own opinions and may try to influence you—which may or may not be helpful. You and your co-parent, if you have one, are entrusted with your child’s care. You know your child and your family’s values better than anyone. 

Some caregivers really want to have care goals conversations, and others want to avoid them. Some prefer to plan, and others want to decide what to do in the moment. You may wish to confront everything at once, or only some subjects. And you may change your mind when you need to make certain decisions. You can do that, too. Decision-making is a process that cycles over the course of your child’s illness progression.

Goals of care conversations are usually revisited over time as you adapt and become more knowledgeable about your child’s condition and illness progression. You may find that your goals are changing as you gain confidence as a caregiver. You have learned a lot as the journey has almost certainly involved new symptoms and interventions to consider. 

Over time your priorities may be shifting. Perhaps some things matter less, and others matter more.  This does not mean that your prior ideas were wrong, only that you have more information now on which to base your decisions. While it may be difficult and scary to acknowledge what is occurring, consider how your ability to reflect, change and be the parent you want to be has grown through the journey.

Certain types of decisions should be documented to protect your child and family. A palliative care professional or social worker can guide you in thinking about this. Finding support from trusted advisors on the medical team, therapists or spiritual leaders can be very helpful. The section on Advance Care Planning presents detailed information for your consideration.