Young People Facing End-of-Life Care Decisions

Talking about End-of-Life Issues

You may have many questions about how you may feel in the coming weeks and months. You might want to know about how long people with your type of end-stage cancer often live. Learning about choices for physical and emotional care at the end of life, and sharing your personal preferences, will help you to receive care that is best for you. As a young person you may choose to look ahead and make the most of the time that remains, in comparison to older adults who often look back on their lives. 

Until now you and your health care team have been focused on stopping the spread of cancer. Therefore, it may be challenging to shift gears and talk about end of life care. Your health care team may look to you for cues about how much medical information you want, what emotional support you need, and what is most important to you in the time ahead. Keep in mind that you should be at the center of all decision-making.

Having conversations about issues surrounding life and death does not mean that you or your health care team are giving up. It takes courage to reflect on, talk about, and accept that it is no longer possible to keep the cancer from advancing. Your health care team will provide you with care and medicines that focus on the best quality of life possible. Hope will be redirected towards things that are most important to you, in the coming weeks and months. 

Thinking About Priorities: Young People with End-Stage Cancer

As you think about things you want to do, and the people you want to be with, here are some questions it may be helpful to reflect on and answer.

Who and What are Most Important to You? 

If you’re like many young people, it’s hard to process what’s happening, much less talk about it. You may find yourself busy providing support to parents, spouses or partners, and young children. You may try to keep difficult thoughts and feelings to yourself—although sharing your feelings with the people you’re closest to will help you to feel less isolated and fearful. Counseling and bereavement support services are available at most hospitals for young people their families. While you may want to protect people around you from feeling sad, it’s both okay and important to let people know how you are feeling.

Sharing and Making Memories

Spending meaningful time with friends and family may be especially important. Tell your health care team about the things you’d like to do. Reach out to people you want to see and make plans as you are interested and able. You may choose to write notes for friends and family for them to read now or later. Some young people enjoy creating a memory box or book that includes objects, poems, quotes, and other things that have special meaning. Memory boxes and books can also bring comfort to your family and friends. 

Making End-of-Life Care Decisions

Talking about your preferences for end-of-life care will help you receive the care and treatment that feels right and best to you. It may be insightful to read about the experiences of other young people in the book Planet Cancer, particularly these two chapters: “Leaving a Legacy” and “How to Approach Death and Dying.”

Commonly Asked Questions from Young People with Cancer 

Some people on your health care team are easier to talk with than others. Close personal bonds may make it easier to open up and have honest conversations. 

As you think about questions to ask your health care team, consider adding these to your list:

• Are there treatments that aren’t curative but might slow my cancer?
• What are my choices to control pain and other symptoms? 
• What are my choices for where to receive end-of-life care? What services are provided if I choose to receive end-of-life care at home?
• Do you have suggestions to help me start conversations with friends? Will you help me and be there with me, when I talk with my family? 
• What resources could help me learn more about end-of-life care choices?

Young people who make decisions earlier, rather than later, say that it frees them to focus on living, and lowers their levels of stress and anxiety. 

Planning Guides for Young People

Voicing My Choices^TM  is a guide designed to help adolescents and young adults make end-of-life choices that might otherwise be delayed or avoided. Resources such as this one may be used at your hospital to help you, your health care team, and your family talk about how you want to be comforted and supported - both emotionally and physically—medical treatment(s) you do and do not want to receive, the place you would like to be when you are at the end of your life, who you want to make decisions for you, if you’re not able to make them yourself, and how you wish to be remembered. While not everyone wants to participate in planning their memorial service, documents like Voicing My Choices allow you to voice your preferences—such as specific readings, music, photos, attendees, and food. Learn more about young people's involvement in developing Voicing My Choices.

Learning More about End-of-Life Care 

The choices for care when treatment may not be an option section of our site can help you and your family navigate through key questions you may have, such as:  

• Where is end-of-life care given? Hospice care is end-of-life care that is given at your home, in the hospital, or at a respite or hospice center. Young people often choose to receive their end-of-life care at home, where they can be in a familiar environment, close to family and friends around the clock. Learn more about planning the transition to end-of-life care.
• What kind of care and support are given? Palliative care (also called comfort care, supportive care, or symptom management) is an approach that addresses you as a whole person, not just your disease. Learn more about palliative care in cancer. 
• How do I communicate what I would like? An advance directive is a legal document in which you select the type of medical care you would like to receive, if you are no longer able to make medical decisions for yourself. Developing an advance directive is a process, not a one-time conversation, especially for young people. Learn more about advance directives. 

Leaving Memories and a Legacy

Some young people choose to think about ways they will be remembered. You may want to plant a tree or flowers, make a collage with friends, create art that can be saved or shared in a public space, or set up a scholarship or small legacy fund in your name.