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.
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.
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 You might see your family and friends cry, shout, become withdrawn, or show that they are sad in unexpected ways.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.
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: