Blog: Family Connections with Pediatrics
This month’s issue of Pediatrics features an important article for families facing advance care planning decisions. The article, entitled ‘Advance Care Planning Preferences for Adolescents with Cardiac Disease’ (10.1542/peds.2020-049902), written by Hansen et al points out that, while most adolescents (for this blog, we will refer to this age group as teens) and their families value advance care planning, there are still gaps and missed opportunities.
What is Advance Care Planning?
Advance care planning (ACP) is the process that helps patients, families, and the health care team talk about the disease, the patient’s wishes, and end-of-life care. ACP has been shown in other studies published in Pediatrics and additional journals to lower stress and anxiety and lead to better care at the end-of-life.
What is in the article?
The authors talked to teens ages 12-18 who had heart disease and their families. Most of the teens and families said it was important for teens to be a part of ACP discussions. Most of the teens thought they were old enough to make advance care decisions, but only 31% had ever talked about end-of-life care. Most had those conversations with friends, not with family members or their doctor.
Talking About ACP with the Doctor
- Teens (92%) wanted their doctor to tell them if they were “sick and not going to get better, as soon as the doctor knew,” but only 43% of families wanted the doctor to tell their child this news.
- 38% of families said they did not know if their teen would want to know if they were “sick and not going to get better”.
- Most teens (80%) and families (67%) who did not already know how long the teen was expected to live wanted the teen to receive this information from their doctor.
When Should We Talk About ACP?
- Most teens and families said they should start to talk about ACP early - before the teen got very sick and while they were still feeling healthy or when first diagnosed with serious illness.
How Would the Teen Feel About Talking About ACP?
- Most teens and families thought that talking about ACP would make the teen feel relieved that the healthcare team knows what they want.
- 61% of families thought that teens would feel stress with talking about ACP. Only 31% of teens thought that they would feel stress about this.
How can you talk about ACP with your teen? How and where do you start?
Important note: This study focuses on teens who have heart disease; however, ACP discussions are also important for teens with other serious illnesses. The tools below are for families who are facing any diagnosis. I am sharing tools that were both helpful to my family during the ACP process for my daughter and that I have used in my work.
- Take a deep breath. Planning is a process and takes time. These are not one-time conversations. Allow key lessons learned in this article and previous studies to guide you:
- ACP reduces stress and anxiety for teens, families and the health care team. Even though we worry about talking about ACP, not talking about it may cause more stress. Teens want to know about their illness and want to talk about it with their families and their healthcare team.
- ACP should occur early and often. There are many reasons that a teen’s ACP wishes can change, and it is important to talk about that.
- The Conversation Starter Guide for Caregivers of a Child with Serious Illness outlines how to start talking with children (not just teens) who are living with a serious illness about the health care that is right for them. The Conversation Project has other materials, such as a Guide to Talking with a Healthcare Team, videos and podcasts, that can help anyone learn more, process their thoughts and feelings, and begin talking.
- Voicing My Choices, in English and Spanish, helps teens living with a serious illness to share their wishes for comfort, treatment and remembrance. This 2012 Pediatrics article looks at how Voicing My Choices and how to use in practice. My Wishes helps children share how they want to be cared for if they become seriously ill. Five Wishes offers tools to help families, doctors, and communities to talk about care and comfort choices.
- Courageous Parents Network has a lot of information, networks and advice for families and the health care team. Look at this site to learn more for yourself or share the link with your health care team.