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Your child’s primary physician, who knows your family well, can be helpful in considering your values. Palliative care and complex care clinicians can also support you in this, and in identifying the decisions you may need to make. If you and a co-caregiver have differences of opinion, a psychologist, social worker or chaplain can provide a neutral space for talking through any concerns. Hospice care can help you revisit your goals as your child declines. These clinicians can also support you in completing any documents needed to express and convey your choices.
Goals of Care
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Caring for a child (or teen or adult) with SNI means coping with a wide range of symptoms and interventions. Over the course of the illness, you will face a number of difficult decisions with different options to consider. Understanding what is happening in the present, and anticipating what lies ahead, can be daunting and scary. The more you consider your goals and what’s important for your child and family, the more confident you will feel at the time you are faced with these challenges.
ESP Goals of Care
Goals of care is a term commonly used to refer to what ideas and values guide you in decision-making for your child. These can include decisions about their comfort, their participation in family and community activities, and your hopes for the trajectory of their life.
Whether or not we are consciously aware of them, we all have internal conversations about quality of life. We have a basic understanding of what a good day feels like, what a good life looks like: who we are, how we feel, what we do, with whom we share ourselves. As we mature and age, some of our assumptions naturally change.
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. When your child is diagnosed with SNI, what you find yourself wishing for will likely shift. Certain things will matter less, and others will matter more.
When to Think About Goals of Care
This care journey will almost certainly involve medical crises when you will have to make a fast decision about an intervention. It is helpful to have thought in advance about what you want for your child during a time of calm, when things are stable. Your child’s team may encourage you to have these conversations ahead of time when you will be able to think more clearly and be better able to process your thoughts and ideas. Wellness visits are a good time for these discussions. Just after a change in your child’s baseline is another important time to check in. The changes may prompt you to think differently about what is best. This does not mean that your prior ideas were wrong, only that you have more information now on which to base your decisions or that your priorities have shifted.
Defining Goals of Care
Here are some questions to guide your thinking:
- 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?
- Who or what will help you make decisions now or in the future?
- If your child becomes sicker, how much do you think it makes sense to have him/her go through different treatments for the possibility of gaining more time with you and your family?
- Are there specific life conditions or states that you would not find acceptable for your child to be in (for example, with a tracheal tube or a respirator)?
- Is there the possibility of a “good death” for your child? Is there anything that you or your medical team could do that might make you less fearful of your child’s death?
These are serious questions. Family members or friends may have their own opinions and may try to influence you, but you and your co-caregiver are entrusted with your child’s care. You know your child and your family’s values better than anyone.
As you make certain decisions you will want to document them. Most states and jurisdictions have specific processes and forms for this. The palliative care team or social worker can help you review the forms and make certain that they are properly completed so that your directives are respected.
ESP Conversations about goals of care are “what-if” discussions. If a clinician suggests a look at your goals of care, you might worry or assume that they are speaking about end-of-life decisions—but this is not necessarily so. Your goals of care for your child are important throughout the illness journey; thus, the clinician wants to know what matters to you and your family, and how what matters will guide you to consider possible treatments and interventions.
Your medical team and/or palliative care team will encourage you to think about quality of life. They will ask what this means for you, your child, your family. It may be helpful to describe (to yourself or to them) 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? Which interventions would you consider for your child and which would you not? Do you (or your child) want to avoid the hospital entirely? Are there religious or spiritual ideas that guide your thinking?
Some caregivers really want to have these conversations, and others want to avoid them. Some prefer to plan in advance, 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 if and when you need to make certain decisions. You can do that, too. Decision-making is a process that recycles over the course of your child’s illness progression.
There are no right or wrong answers when we talk about quality of life and goals of care.
