NCI Guide Helps Providers Get Adolescent and Young Adult Patients Involved in End-of-life Care 

Get Permission

It is the responsibility of the health-care team to open these discussions and allow the AYA and caregivers a safe place to have these important conversations.

—Sima Zadeh

Enabling adolescent and young adult (AYA) patients to become involved in advance care planning can help parents and health-care agents make informed decisions, alleviate distress, and possibly improve the patients’ quality of life, according to researchers at the National Cancer Institute’s Pediatric Oncology Branch, who reported their findings at the 10th Annual Conference of the American Psychosocial Oncology Society (APOS), held recently in Huntington Beach, California.1-3

These investigators have created a document for adolescents and young adults diagnosed with a terminal illness. The goal of the document, titled Voicing My Choices: A Planning Guide for Adolescents & Young Adults, is to address the unique emotional, social, and spiritual needs of young people with life-threatening illnesses (see The ASCO Post, January 15, 2013, page 70).

Opening up Discussions

The group found that AYAs want to discuss end-of-life issues with those they trust, but few resources exist to help them cope. Documenting their thoughts and wishes gives these youth an opportunity to be involved in their care, give meaning to their life, and leave a legacy for their family and friends. NCI is now working on helping hospitals around the country implement Voicing My Choices with seriously ill adolescents and young adults as part of the care provided.

“Dealing with end-of-life care is difficult for both the caregivers and the adolescent or young adult as they often avoid conversations in order to protect each other,” said NCI postdoctoral fellow Sima Zadeh. Ms. Zadeh and coauthors Lori Wiener, PhD, Director of the Psychosocial Support and Research Program and Staff Scientist in the Pediatric Oncology Branch, Center for Cancer Research at NCI, and Maryland Pao, MD, Assistant Professor at Johns Hopkins Medicine and Clinical Training Director at the National Institute of Mental Health, presented their work in a poster at the APOS meeting.

“It is the responsibility of the health-care team to open these discussions and allow the AYA and caregivers a safe place to have these important conversations,” Ms. Zadeh said.

Study Details

Phase 1 of the research included focus groups and one-on-one interviews with 20 patients diagnosed with cancer or HIV. Participants reviewed Five Wishes, an existing advance care planning guide for adults, and asked whether concepts included were helpful to individuals their age living with serious health problems, appropriate for their peers, and stressful to contemplate.

The results showed that AYAs found items related to how they would like to be remembered and treated very helpful and those pertaining to specific medical decisions somewhat less important. When asked which content was missing, the participants requested space to write letters, express how they would like to be remembered on their birthday and holidays, and plan the details of their memorial service.

Phase 2 of the study contained 52 participants, ranging in age from 16 to 28 years. These participants were asked to compare a newly created document to Five Wishes. Respondents liked both closed- and open-ended questions. They also appreciated colorful pages that were easy to read and understand. The adolescents and young adults interviewed found discussion of medical treatment the most taxing topic and their spiritual wishes the least difficult. No significant differences were found among patients of varying diagnoses, genders, races, or ages.

“Allowing them to take part in their end-of-life care—by sharing their preferences for the types of treatments they do or do not want and a means to document how they want to be remembered—allows them to regain a sense of self,” Ms. Zadeh said. “This process can also deepen the safety and trust felt in their relationships with both their caregivers and providers.”

Recommendations for Providers

There are several important factors for health-care providers to consider when utilizing Voicing My Choices. Both the patient and the family should have an adequate understanding of the child’s diagnosis and prognosis. Many parents are resistant to having the discussion and/or involving the AYA patient in the decision-making because they are reluctant to anticipate a dismal outcome and fear that doing so will communicate a loss of hope to their child. Health-care providers are sometimes uncertain of how and when to introduce the issue. They often feel uncomfortable, unprepared, and unskilled in having end-of-life discussions, as their primary objective is to provide curative treatment.

The researchers suggest that providers develop a standardized approach that includes consistently addressing patients and their families, particularly when cure is not possible. A trusted provider should introduce advanced care planning when patients and caregivers are in a relatively stable state of mind, not during a crisis. These discussions should take place early on, soon after diagnosis. It should be made clear that discussion of end-of-life wishes is to respect the patients treatment wishes throughout the treatment trajectory and does not indicate that anyone has given up hope.

NCI recommends that each topic within Voicing My Choices be presented as a separate “module,” beginning with the sections addressing comfort and support. Patients should be reminded that the document can be revised if the situation changes. Especially when making decisions about life support treatments, the adolescent or young adult should work alongside a provider because, even with the glossary, many of the concepts can be difficult to understand.

Moving forward, the team plans to do further research on the utility and feasibility of Voicing My Choices. They hope that the document can be a useful tool to guide treatment and respect AYA wishes. ■

Disclosure: Funding for this study was provided by the Intramural Program of the NCI/NIH.


1. Zadeh S, Wiener L, Pao M: Helping providers to help adolescents and young adults be involved in end-of-life care: The conversation no one wants to have. Abstract P2-4. 2013 American Psychosocial Oncology Society Annual Conference, Presented February 16, 2013.

2. 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.

3. Wiener L, Zadeh S, Wexler L, et al: When silence is not golden: Engaging adolescents and young adults in discussions around end-of-life care choices. Pediatr Blood Cancer 60:715-718, 2013.

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SIDEBAR: APOS Best Program Award

This poster by Ms. Zadeh and colleagues was one of two tied for the Best Program award, presented by the APOS Scientific Program Committee at the Annual Meeting. The two award-winning posters were:

Helping Providers to Help Adolescents and Young Adults be Involved in End-of-life Care: The...