End of Life: Adolescents and Young Adults

Your medical team is absolutely dedicated to helping you grow and thrive with your heart defect.

In some rare circumstances, teens and young adults may have exhausted their surgical treatments, procedures, and transplants in order to allow their hearts and other organs to work well enough to keep their bodies alive. This is a difficult time for everyone involved and if you (or someone you love) are in this difficult position, we want you to know that your voice and opinions matter. You are still in charge of your health care and being open and honest with your team allows us all to continue to learn and grow during difficult times. Here are some things that we want you to consider:

Expressing Your Wishes

During end of life, young people have shared with researcher Lori Weiner, PhD their desire to make decisions. By sharing how they want to be treated, what they want others to remember about them, and who will make decisions for them if they become unable to speak, we learned that communicating preferences helps young people feel more comfortable during end of life.  The following links to her research and book Five Wishes may be useful to you as you consider what is most important to you during this time:


Accepting impending death is likely difficult and painful for you and your family. You might have many feelings such as anger, sadness, relief, disbelief, and confusion. Everyone deals with these feelings differently and that is ok. If you develop an increased interest in alcohol, promiscuous sex, drug use, or self-harm, speak with a trusted adult and/or counselor to get extra help. These behaviors may make you feel worse, emotionally and physically.
Some ways to cope with terminal illness and end of life include:
  • Recognize and communicate how you feel
  • Join a support group
  • Understand your own coping process
  • Find ways to tell your story - writing, blogging and creative venues like art and music can help
  • Surround yourself with positive people
  • Do something to reach out to others and make a difference

End of Life for Your Loved Ones

Illness is a stressful experience for many families. You might see people you know cry, shout, become withdrawn, or otherwise show that they are sad. It is hard to understand when young people die before their peers, and most people, including your parents, friends, doctors, nurses, siblings, cousins, teachers, co-workers, and roommates want to help you recover. If you know you are dying, know that your loved ones are experiencing many emotions as they spend time with you at home or in the hospital. For some of them, explaining how they feel could be too hard, even when they try. Be honest about what you want during this time, sharing your needs for personal space and reflection, and your preferences in your care as noted in the links above.

Support Groups and Websites