Advance Care Planning

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While it may feel overwhelming or scary to consider planning for their child’s end of life, some families find that planning in advance 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.

Some caregivers want to actively plan for their child’s end of life, while others hesitate to plan. It is not uncommon for parents to fear that talking about end of life will make their child’s death happen sooner. They may worry that even thinking about their child’s end of life 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 goals 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). 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. 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 end of life. 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.

Planning involves difficult decisions and strong feelings naturally arise. Families face the possibility of regret for their decisions. Fear of “falling apart” at a child’s end of life is also common and understandable. These feelings are aspects of anticipatory grief. Your reactions may be strong, and they can’t always be anticipated. Talking them through with support can help you find ways to manage and cope.

“My fears were around how Talon was going to pass. We were very strong on him being comfortable. I didn’t want to see him suffer … As far as afterwards … I was worried about always looking over the crib and it being empty.“

– Chad, parent of Talon

ACP and Goals of Care

Advance care planning 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 form or the POLST. These forms are products of that planning, but the planning itself is about conversations. As you consider your child’s end of life and possible medical orders, you may want to reflect on questions like these:

What might a good death look like for you, your child, your family?
What could be done now to make your child’s death less frightening or difficult?
Where would you and your family want your child to be, if possible, during the final
days/weeks? For example, at home, in the hospital, at a hospice home?
Who would you and/or your child like to have with you?
Who will you call to support you when the time comes?
How would you, your child and family wish to remember and memorialize your child?

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 the planning 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 also has a number of other aspects for you to address, including making arrangements for your child’s body following their death. 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.