Teens and Young Adults with Cancer Want a Voice in End-of-life Care

Having an advance-care planning guide helps patients maintain control and preserve hope, study finds.


Get Permission

Oftentimes, [adolescents and young adults] feel they can’t have conversations about what they want or don’t want in their medical care and under what circumstances because their parents may feel that they are giving up hope.

—Lori Wiener, PhD

A top the list of concerns of adolescents and young adults with a life-threatening cancer are these two considerations: being able to choose the kind of medical treatment they want (or do not want) and expressing their wishes to family and friends about how they want to be remembered, according to a new study published in the journal Pediatrics

Advanced Care Planning

The focus of the study was to assess and compare the usefulness of two previously developed advance-care planning guides, My Thoughts, My Wishes, My Voice—a guide prepared specifically for adolescents and young adults—and Five Wishes—an advance-care planning guide for adults. The study researchers asked 52 adolescents and young adults, aged 16 to 28, living with metastatic or recurrent cancer (including leukemia, brain tumors, and sarcomas) or HIV/AIDS, to evaluate pages from both guides and suggest any changes they would like to have in content, design, format, or style.

The result is the publication of a new guide, Voicing My Choices: A Planning Guide for Adolescents & Young Adults, which incorporates topics the study participants said were most important to them, including having input in their medical care and treatment decisions, such as the types of life support treatment they want; how they want to be cared for and supported during their illness; who they want making medical care decisions if they can no longer make them; and how they want to be remembered after death.

Finding Meaning

“Although it’s not clear that their understanding of death is the same as an adult’s would be in terms of consequences, when adolescents or young adults think about end-of-life, they do think about existential issues and their medical care, and they absolutely think about altruistic ways of living,” said Lori Wiener, PhD, Director of the Psychosocial Support and Research Program; Staff Scientist in the Pediatric Oncology Branch, Center for Cancer Research at the National Cancer Institute; and lead author of the study.

“The majority of study participants wanted to include information in the document that expressed their wish to either donate their cells or their bodies to science so that other people could benefit from their disease,” she continued. “Perhaps these patients, who have already been dealing with life-limiting illnesses, are even more open to giving back to others. It is a way of finding meaning in their life and in their experience.”

Maintaining Control and Independence

“Oftentimes, [adolescents and young adults] feel they can’t have conversations about what they want or don’t want in their medical care and under what circumstances because their parents may feel that they are giving up hope. Parents may not want to have these conversations because they are afraid that if they start talking about ending treatment or end-of-life issues, their child will feel that the parent is giving up hope. The risk is that the child dies in emotional isolation at a time when both the child and the parent need to feel a sense of closeness and comfort each other,” said Dr. Wiener.

Having a document in which adolescents and young adults with cancer can express their fears of death, worries over being forgotten, and desires to take part in their medical care decisions, provides an important communication tool for adolescents and young adults, their parents, and their medical team, hoping to ensure that these patients will not die emotionally alone, said Dr. Wiener.  Future research will help determine whether this tool increases congruence between patients and families or their physician or improves patient outcomes.

Allowing adolescents and young adults to participate in their end-of-life decisions also gives them back the sense of control and independence they were robbed of when they became ill. “People in this age group are at a critical developmental stage, where they are negotiating greater independence and autonomy, formulating their self-identity, and trying to define what their role is going to be in life. Living with a life-threatening illness challenges every one of those developmental goals. Instead of working toward increasing their independence, they find themselves dependent on their parents, their medical team, and medicine,” said Dr. Wiener.

Getting the Conversation Started

All medical discussions with seriously ill adolescents/young adults and their parents should begin before there is a medical emergency, and possibly even at the time of diagnosis, said Dr. Wiener. “It’s important to establish early on an open relationship with the patient and the family that is built on honesty. At the time of diagnosis, the oncologist might ask the patient a series of questions such as, What do you understand about your disease? How much information do you want us to share with you? Is it okay if I speak privately with your parents? Are there certain things you would like to speak to me about in private? Do you prefer that we provide you with written material or that we talk everything through?” said Dr. Wiener.

“What we need to do is teach everybody on the medical team strategies to have conversations with patients and family members that do not foster a sense of hopelessness,” said Joanne Wolfe, MD, MPH, Division Chief of Pediatric Palliative Care in the Department of Psychosocial Oncology and Palliative Care at Dana-Farber Cancer Institute and Director of Palliative Care at Children’s Hospital Boston. “Starting the conversation with general, open-ended, and nonthreatening questions provides an opportunity to deepen the conversation later. Having a tool like Voicing My Choices is an important contribution to facilitating these conversations.”

For a copy of Voicing My Choices: A Planning Guide for Adolescents & Young Adults, visit the Web page ­agingwithdignity.org/vmc. ■

Disclosure: Drs. Wiener and Wolfe reported no potential conflicts of interest.

Reference

1. Wiener L, Zadeh S, Battles H, et al: Allowing adolescents and young adults to plan their end-of-life care. Pediatrics 130:897-905, 2012.


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