Enlisting the advice of adolescents and young adults with serious illness, researchers at the National Institutes of Health have developed a guide to help young people and their families address issues surrounding end-of-life care.
Voicing My CHOICES is the first guide designed to help adolescents and young adults express how they would like to be comforted, supported, and cared for in the course of serious illness, and how they would like to be remembered if they do not survive. The guide is aimed at helping families and health professionals open difficult conversations, and was written using language and questions tailored to the particular needs and preferences of young people.
A paper in the November 2012 issue of the journal Pediatrics reported on a study in which young people with serious illnesses read and commented on pages from two existing advance care planning guides. The study found that adolescents and young adults do want to be involved in end-of-life planning. Almost all of the 52 participants in the study felt that having such a guide was helpful and important. Their comments on specific questions shaped the content of Voicing My CHOICES.
Lori Wiener, Ph.D., director of the pediatric psychosocial support and research program at the National Cancer Institute, is lead author of the Pediatrics study and developed the prototype for Voicing My CHOICES that the young participants evaluated. She collaborated with Maryland Pao, M.D., clinical director of the National Institute of Mental Health, whose staff provides psychiatric consultation at NIH’s research hospital for patients of all ages with serious illness.
Developing Voicing My CHOICES began with focus groups in which young people with serious illness endorsed the need for an advance care planning guide for persons their age. Out of this came a study, reported in 2008, in which a group of 20 adolescents and young adults living with cancer or perinatally acquired HIV disease were asked to read and evaluate the publication Five Wishes, an advanced directive for adults, along with additional topics identified during the focus groups. The study team used their feedback to create a new guide for young people called My Thoughts, My Wishes, My Voice. In the current study, youth reviewed pages from this publication and Five Wishes. Their comments were incorporated in the final Voicing My CHOICES.
“Adolescents and young adults often stay silent, not sharing their fears—as they do not want to further upset their parents,” said Wiener. “And parents don’t bring up end-of-life issues for the same reasons.” The research studies showed, however, that teens and young adults are interested in these issues and value the opportunity to express their preferences.
The guide also serves a developmental purpose. “At a stage of life where they would normally be seeking identity and a way to leave their mark on the world, they are in a situation where they can’t make decisions,” said Pao. Youth are concerned, she said, with how they will be cared for and remembered and, true to their age, about peer relationships. They want to be heard.
Voicing My CHOICES includes questions about making medical care decisions and the types of life support a young person would or would not want. In response to comments, changes were made to make the language in Voices My CHOICES less technical, and to offer both yes/no and open-ended questions. Participants in the study endorsed a section in which they can indicate whether they would like to donate their body to science or have an autopsy, which speaks powerfully, said Wiener, to their sense of altruism and the need to find meaning in their experience
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“Adolescents and young adults can feel very frightened and alone when their bodies are no longer responding to medical interventions and decisions are being made around them,” said Wiener. “Allowing them to be involved in decisions, and to document how they wish to be remembered, enhances the trust in parent and medical provider relationships and provides them with the opportunity to give meaning to their life.”
The product of a collaboration between clinical research teams representing two different areas of focus within NIH’s research hospital—pediatric oncology and psychiatry—Voicing My CHOICES can be used to help patients, families, caregivers, and health care providers. Voicing My CHOICES is available from Aging With Dignity (www.agingwithdignity.org), a nonprofit that provides the advanced directive document for adults, Five Wishes.
References
Wiener L, Zadeh S, Battles H, Baird K, Ballard E, Osherow J, Pao M. Allowing adolescents and young adults to plan their end-of-life care. Pediatrics. 2012 Nov;130(5):897-905. doi: 10.1542/peds.2012-0663. Epub 2012 Oct 8.
Wiener L, Ballard E, Brennan T, Battles H, Martinez P, Pao M. How I wish to be remembered: the use of an advance care planning document in adolescent and young adult populations. Journal of Palliative Medicine. 2008 Dec;11(10):1309-13.
