Orlando, FL—Adolescents and young adults (AYAs) with cancer often wait too long to discuss their end-of-life preferences, or they do not discuss those preferences at all and pass away in a manner that is against their wishes, according to Lori Wiener, PhD, DCSW, Co-Director, Behavioral Health Core, and Director, Psychosocial Support and Research Program, Pediatric Oncology Branch, National Cancer Institute, Bethesda, MD.
Each year in the United States, >12,000 AYAs aged 15 to 39 years die from cancer and other life-threatening diseases. The American Academy of Pediatrics, the Institute of Medicine, and the World Health Organization all recommend involving youth in decisions regarding their care if they are emotionally and developmentally ready to do so, but very few children or adolescents living with a chronic illness actually have an advance directive, or living will. Families of children with life-limiting illness want to have conversations about the end of life, and the majority of them want their child to participate in those conversations, but few formal advance care planning programs or resources are available.
“Young people think about dying but often don’t want to talk to their families about it. Meanwhile, families think about it but don’t want their child to think they’ve given up. We’ve come a long way in terms of having these kinds of end-of-life conversations, but not long enough,” Dr Wiener said at the American Psychosocial Oncology Society 14th Annual Conference.
What Is Happening?
According to Dr Wiener, children and AYAs with cancer often sense that they are dying, even if no one is talking about it. They want to protect their parents, and they often end up living in a state of emotional isolation as a result, but adolescents want the opportunity to say goodbye and to leave a legacy.
Dr Wiener’s own research has shown that the vast majority of AYAs feel that a patient with terminal cancer has the right to be informed about whether he or she is going to die. These patients want to be able to decide who would make medical decisions for them if they no longer were capable, how they want to be remembered, and even “who will get their stuff.” They still desire privacy and want to dictate what their friends and family know about their medical situation, and they also want to have conversations about spiritual preferences.
Important facets of adolescents’ end-of-life wishes are often not known by their families. Research has shown that the majority of AYAs with cancer want to talk about death early on, but only approximately 50% actually talk about the end of life, and very few are familiar with specific terms related to the subject. Most want to die at home but end up dying in the hospital, and only a small percentage of this population has ever even heard of hospice.
Neglecting conversations about the end of life can have unintended consequences. AYAs are robbed of their ability to plan and leave a legacy. Families experience long-term psychosocial consequences, prolonged grief, and tremendous regret, often resulting in loss of employment and heightened mental health costs.
“These parents needed to know what their children wanted, and they needed to know it earlier,” Dr Wiener said.
Starting the Conversation
“Children and AYAs need to have permission to talk about what’s happening to them. Give them permission to approach the ‘what if’s,’” said Dr Wiener. Parents also need support in broaching this difficult conversation with their child. Family tools, such as “My Gift of Grace” and “Hear My Voice,” can help get the conversation started.
In a practice setting, therapeutic workbooks and games, like “ShopTalk,” can elicit preferences from AYA patients.
An advanced care planning guide gives them a place where they can document their wishes and their legacy.
“Let them normalize their thoughts. Let them know that all people think about these things,” Dr Wiener urged.
In clinical practice, explore whether parents wish to talk with their children about progressive illness or the end of life, she said. Identify the parents’ reasons for discussing or not discussing death with their child, and understand the factors that may cause the parents to regret their decision over the long- term. And if regret is a possibility, talk about it, she said.
“Whatever you do, support the parents. Hear their voice, understand their goals, and pave a road,” Dr Wiener added.