Dealing with a child’s serious illness is difficult, particularly when it involves planning for end-of-life care. Advance care planning can help you identify and meet your family’s priorities and wishes.
If your child has a complex or life-limiting condition, your doctor may suggest developing an advance care plan, which outlines the care you’d like your child to receive in critical situations, including when no other treatment options are available.
Advance care planning often includes advance directive documents, such as a living will, durable health care power of attorney, or DNR (do not resuscitate) orders. In accordance with Pennsylvania law, advance directives are legally binding if the person completing it is of sound mind and is also one of the following:
- 18 years or older
- A high school graduate
- Married; or
- An emancipated minor
During your child’s pre-admission interview, you will receive information concerning your rights to make decisions concerning medical care, your rights to accept or refuse medical or surgical treatment for your child, and your rights to formulate advance directives.
If your child has an existing advance directive, please provide a copy to your care provider so it can be added to his or her medical record. If your child does not have an advance directive and you would like one, please notify Pastoral Care Services at 717-531-8177 or ask your care provider.
The Children’s Hospital does not discriminate against patients based on whether they have an advance directive. You can withdraw your child’s advance directive at any time.
Talk to your child
Conversations about advance care planning can be uncomfortable, but we recommend having an open discussion with your child if he or she is old enough. Listen to his or her concerns, wishes, and preferences, and talk honestly about yours, too. Older children may have specific needs that they will want to include in any directives.
Connect with the Hummingbird Program
The goal of the Hummingbird Program is to improve the quality of life for children with complex, life-limiting conditions by focusing on their physical, emotional, psychosocial, and spiritual needs.
Comprising doctors, nurses, and counselors, the Hummingbird team supports both patients and families, honoring their goals, wishes, and beliefs. They work to involve families in the decision-making process so that you understand your child’s care options and your and your child’s needs are being met.
Your child’s primary care doctor or a member of his or her inpatient medical team can refer you to the Hummingbird Program.