For Teens

End of Treatment Options

When you face the end of treatment options, your care team is with you to help you manage this difficult period.

Your Voice Matters

In rare circumstances, the surgical treatments, procedures and transplant options may have become exhausted. This may mean that there are no additional steps to take to allow your heart and other organs to continue working. This is a difficult time and it is also a time for you to feel your voice matters more than ever.

You are still in charge of your health care and being open and honest with your team allows them to help you transition in the ways you are most comfortable.

Here are some things that we want you to consider:

By sharing how you want to be treated, what you want others to remember about you, and who will make decisions for you if you become unable to speak, help everyone in the process feel comfortable.

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 these feelings lead to increased interest in alcohol, promiscuous sex, drug use, or self-harm, speak with a trusted adult and/or counselor to understand how you feel and help you through this difficult time.

No one expects you to manage this alone and these behaviors can often make the feelings you have worse not better. They may also make you physically worse preventing you from doing things you want or need to.

  • Communicate: What is most important is that you recognize, acknowledge and communicate how you feel. Once you face these feelings it becomes easier to manage them.
  • Seek Support: Sometimes you may want to talk with people who really understand what you are going through – support groups can connect you with people who truly know how you are feeling.
  • Coping Process: Not everyone copes the same, and your process may look and feel different than others. Understand your coping process so that you can communicate that with others. When you understand it, you can help them understand it which can reduce conflict and create a more supportive environment.
  • Tell Your Story: Everyone has a story, and this is a time to share yours however is best for you – writing, blogging, art, music, programming, or other creative outlets. This is your voice and your story.
  • Find Positivity: Surround yourself with positive people, and help those who focus on concerns, or negative outcomes, to understand that this does not help you.
  • Give Back: You may feel that you want to do something to give back, make a change, or help others who are struggling with this or other challenges. If that is important to you, take time to do something that makes a difference that you would be proud of.

Illness is a stressful experience for your family as much as it is for you. You might see your family and friends cry, shout, become withdrawn, or show that they are sad in unexpected ways. Those most trusted in your life – your parents, friends, doctors, nurses, siblings, cousins, teachers, co-workers, and roommates want to help you recover. When this seems no longer possible, they also are unsure of how to cope.

If you know you are dying, know that your loved ones may be experiencing many of the same emotions as you. For some, they may find expressing how they feel to be difficult, and when they try it may come across as awkward. People find it hard to talk about dying, and may avoid it, even when you want to talk about it. Communicating about how you feel during this time is the best thing you can do for your loved ones. Be honest about what you want during this time, by sharing your needs for personal space and reflection, how you want to talk about your illness, and your preferences in your care.

Helpful Resources

Support Groups and Websites

Additional Reading

During end of life, young people have shared with researcher Lori Weiner, PhD their desire to make decisions. The following links to Dr. Lori Wiener’s research and book Five Wishes may be useful to you as you consider what is most important to you during this time:


Lifestyle Choices & Risky Behavior