Advance Care Planning

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While it may feel overwhelming or scary to consider what may be ahead for your child, some families find that considering plans for future care allows for meaningful conversations and experiences to happen. Indeed, research has shown that families find these conversations helpful, and they do not regret having them even as they are difficult.

Your Team:

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.

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.

Hospice Team

Specialized care for people whose prognosis is measured in months instead of years, and the desire is to focus on comfort.

Grief Counselor

A mental health professional who specializes in bereavement and loss.

A psychologist, social worker, chaplain and/or spiritual leader can help you, your co-caregiver, and other family members (including your child and siblings, if appropriate) to identify any fears, issues, and concerns, either together or separately. Your child’s primary physician, who likely knows your child and family well, can be an important resource in addressing your questions. A palliative care clinician or hospice team can support you and your child in processing strong emotions and attending to your family’s wishes. A grief counselor can be especially helpful before or after the death of your child.

It is not uncommon for parents to fear that talking about the future, including the possibility of end of life, will make their child’s decline happen sooner. They may worry that thinking about the possibility of death signals that they have given up, that they are failing the child. They may also worry that the medical team will also give up. This is not the case. The care team will continue to provide medical care informed by your hopes and goals for your child and their medical expertise.

Advance care planning (ACP) is a term for conversations, held with clinicians, that look ahead to treatment choices and goals of care for a child (or anyone who is ill or aging). ACP is related to your goals of care for your child and family. Some people think that ACP is just about medical orders for life-sustaining treatments, such as the Do Not Resuscitate (DNR) form or Physician Orders for Life-Sustaining Treatment (POLST). These forms are products of that planning (see below), but the planning itself is about conversations.

While it may feel overwhelming or scary to consider ACP, a small number of studies have shown that most caregivers find it helpful and do not regret it. Planning helps family members see that they have choices and some control. It can help parents feel they are being good advocates for their child. The studies have also shown that early conversations about goals are linked to better illness care, including improved quality of life and fewer hospitalizations, especially as the conversations help the clinical staff know how best to support the family’s wishes.

If your child is a minor (under 18 in the United States) and cognitively capable, you will want to know their wishes and include them in planning for their illness journey. If they are 18 years old or older and cognitively capable, they will be legally responsible for directing their advance care plan, most likely with your support.

“We hope you know we hope with you. If you’ve been on this road for a while, it’s likely you have heard, “we share in your hope” from someone on your child’s healthcare team. It’s not a platitude. We hear your hopes and hold them steadily in our hearts as we plan for the unknown. We celebrate with you when hopes are realized. We grieve with you when they are not. Hope is what carries us all.”

– Katie K., clinician

Advance Directives and Medical Orders

Preparing advance directives and medical orders is an important part of planning for your child. Advance directives are legal documents that state what actions should be taken in certain medical situations. They are typically signed and notarized. Clinicians and emergency medical teams will want to understand your wishes for your child, and your tolerance for certain interventions. These instructions are captured in medical order forms. The most common directives and forms have to do with whether there should be attempts to revive (or resuscitate) your child if their heart or breathing stops.

You can always change these directives and orders, but it is important to have them and to make certain that they are up to date. If you don’t have them, ask your palliative or hospice care team or a social worker to explain them to you and to help you complete them. If you have them, make certain that they are easily accessible to medical staff. For example, you may keep them in binder and bring it with you if your child is admitted to the hospital; or keep them an easily accessible place in your home to show the emergency responders.

Involving Siblings

Siblings may sense that there has been a significant change in their sibling’s condition. Depending on their age and interest, they may have questions or ideas about how to participate in planning for the future and/or end of life. How you choose to involve them is very personal to them and to your family. Your children’s primary physician, a psychologist and/or palliative clinician can help you prepare for anticipate and respond to the questions and feelings that will arise. The section “Siblings at End of Life” offers perspective on how to support siblings.

End of Life Considerations

Planning involves other aspects for you to address. If your child is nearing end of life, or if you are inclined to plan ahead, the section End of Life and especially the CPN guides “End of Life Part 1: Planning” and “End of Life Part 2: What to Expect” provide details and perspectives on these difficult topics.