How to Approach End-of-Life Decisions with a Teen

Dr. Wiener has four principles for approaching the subject with your adolescent or young adult patient.

Start Early

It is always best to discuss end-of-life care decisions and considerations when things are calm, rather than waiting until a moment of crisis.

One way to begin discussing end-of-life care is to ask how your child wants to be communicated with.

“Do they want to be in the room with you and their doctor to receive news or would they prefer the doctor give you updates and then you tell them?” Dr. Wiener says. “Do they prefer to read information about their health or hear it?”

Another important question that parents and physicians sometimes hesitate to ask young people is, “What are your treatment goals?” Is the answer to live as full a life as possible? To avoid amputation?

That can open the door to talking more in-depth about their care plan and quality of life. From there, you can pose hypothetical questions such as, “We have every hope that XYZ treatment will work but I have learned from experience that there are some conversations that are helpful to have early, just in case treatment doesn’t go exactly as planned. For example, if you were to get very ill and require ICU care, who would you like to have there with you? Who would you want to make decisions for you, if you were not able to make them on your own? Does this person know what is most important to you?”

Do Not Hesitate

Parents may be hesitant to start conversations about their child’s possible end of life for fear of causing their child concern. However, Dr. Wiener says that, more often than not, patients have thought about the possibility of not surviving and are hesitant to bring it up for fear of upsetting their family. When given an outlet, many adolescents and young adults appreciate the opportunity to express their worries and desires to the adults in their life.

“So many providers will say, ‘This is not the right time to have these conversations. I am only going to make them more upset,’” Dr. Wiener says. “When in reality, [patients are] already thinking about these things. People, especially adolescents and young adults, think about the impact their illness is having on their loved ones. They think about if they are going to be in the hospital and what brings them comfort.”

“Sometimes, families feel regret because they did not try a treatment that may have been available,” Dr. Wiener says. “But more often than that, we hear things like, ‘I wish I spent less time researching protocols and more time with my child.’” Taking the time to listen to and honor your child’s wishes can help parents and families feel more peace with whatever the eventual outcome may be.

Take the Pressure Off

Talking about end-of-life care decisions does not have to be a stressful experience. Instead, think of it as being empowering for your child. By leading the way in these conversations, you can help your child feel less out of control. Facing cancer is very hard, but providing spaces for your child to voice their preferences and exercise autonomy over their body and relationships can ease the emotional burden.

One way to take the pressure off is to have the conversation in a side-by-side situation — in the car, on a walk, etc. This can be less intimidating for adolescents than, say, sitting across from you at the kitchen table.

The swap exercise described earlier can be another tool to help broach a difficult topic.

“It is so interesting. It is a great way to have the conversation in a much less daunting way,” Dr. Wiener says.

Keep the Conversation Going

End-of-life planning cannot happen all in one conversation, nor should it. Do not think of it as something you need to get through and then check off the list. This should be a conversation that continues and evolves over time.

“Never assume that the responses they gave at the time of diagnosis are going to be the same they will give you six months or nine months or a year down the road,” Dr. Wiener says. “People do grow emotionally, and preferences can change. They may be ready to participate more fully in some of those discussions [with their provider]. They will appreciate that you give them that option.”

End-of-Life Planning Resources for Adolescents

Dr. Wiener’s research was used to create Voicing My Choices, a planning guide for adolescents and young adults facing serious illness. Patients can also get support and advice from experts on topics ranging from initial treatment through palliative care options through OSI Connect.

Dr. Wiener says connecting with a social worker or psychologist in your community can be a big help, too, if you can find a provider.

“I recommend starting by asking their oncologist and the different services within their hospital environment — generally they will have licensed social workers available to speak with patients,” she says. “There are community organizations that can sometimes be very helpful, too. Whoever they chose to see, just make sure the person they are working with has experience in medical illness, grief, and loss.”

To find a mental health professional who meets your mental and emotional support needs, you can also go through the American Psychosocial Oncology Society or the Association of Pediatric Oncology Social Workers.

Lori Wiener, PhD, is a senior associate scientist at the National Cancer Institute, where she also serves as co-director of the Behavioral Health Core and head of the Psychosocial Support and Research Program. Her research focuses on psychosocial care for pediatric, adolescent, and young adult patients with critical illness.

Lori Wiener, PhD, receives the Jimmie Holland Lifetime Achievement Award from the American Psychosocial Oncology Society. Credit: Kelly Irwin, MD, of Mass General Cancer Center.