Early, open communication required when involving adolescents in cancer care plans

When an adolescent or young adult receives a cancer diagnosis, their life is completely interrupted.

They miss school for periods of time, they may lose their hair, and they may gain or lose a significant amount of weight. For the most part, they do not have control over what is happening to them.

Lori Wiener

Involving these patients in discussions of their treatment plans and of their expected life outcomes provides them a sense of empowerment, comfort and reassurance, helping them become aware of what is to come while allowing them to openly discuss their fears and wishes.

HemOnc Today asked Lori Wiener, PhD, co-director of the behavioral science core and director of the psychosocial support and research program of the Pediatric Oncology Branch at NCI’s Center for Cancer Research, about how providers can involve adolescents in their cancer treatment plan and why early, open communication is key.

Question: What benefits do adolescents receive when they take part in their own cancer care plan?

Answer: Being informed of one’s diagnosis, treatment plan and treatment toxicities is helpful for most teens. Due to the intensity of the treatment, many have to rely more heavily on their parents during a time when they should be becoming more independent and working toward their own unique identity. Being involved in the care plan provides teens not only the sense of control, but it also sends a powerful message that the treatment team respects their concerns, their capacity to understand their health care needs and their individual preferences. More than anything, open communication leads to healthier relationships and when established early on, this leads to better treatment compliance and better communication throughout the disease trajectory.

Q: Is this something you would offer to all adolescents with cancer, not just the terminally ill?

A: Absolutely, but we should be mindful that every teen is different, and one needs to ask the teen and their family how they would like information communicated and by whom. Some teens really want to hear directly from their doctors or medical providers, yet others prefer their parents to describe what is happening and to describe treatment options to them. It is important to recognize that many parents are naturally hesitant to share serious and difficult information with their child due to a fear that their child could be emotionally harmed by the information and they worry that their child will lose hope with too much information. It is important to note that these fears have not been substantiated. Recent research by Maureen Ellen Lyon, PhD, a psychologist at Children’s National Medical Center, suggests that teens and young adults have not been harmed from discussions about advance care planning.

Q: Do most pediatric oncologists/care teams offer this to their adolescent patients? Is this a new concept?

A: This varies by individuals and also by settings. In the world of medicine, different communication styles exist. Open communication with teens is not a new concept. In the era when most children with cancer died of their disease and were not told of their diagnosis or prognosis, early observational studies revealed that most did, nevertheless, find out about their disease and prognosis either from other children or just by picking up on it from those around them. Subsequent studies involving standardized assessments of psychological symptoms in kids and adolescents with cancer have revealed remarkably consistent results. Better information and more open communication leads to lower levels of distress, negative behavior, depression and anxiety and overall better psychosocial adjustment. A protective effect by withholding information from youth has not been found. But it does seem to be important that the information is given openly by trusted adults in the teen’s life rather than covertly acquired by peers or other sources such as online. When teens pick up information about their illness, treatment or prognosis on their own and they have not been told by a parent or medical provider, they may wonder what else they have not been told.

Q: Can you offer tips for clinicians who treat adolescents with cancer?

A: There are strategies that can help promote communication, reduce tension and allow the teen to have their voice heard throughout the treatment trajectory. First, check in with the teen and ask what they already know about what is going on with their health or treatment. It is important to ask how much information they want to know and if they would like to hear the information from yourself, as their physician, or from their parents. Ask if there are any issues that they would prefer to talk to you about privately and inquire whether they would feel comfortable giving their parents the opportunity to speak with you privately. Again, by asking these questions, it shows that you respect their thoughts and preferences. It also paves the road for open communication later on if more difficult conversations are needed. Also, some people are more visual leaners and prefer written material, whereas others are more auditory learners and would rather listen or tape record a conversation. Giving them these options is really important. I cannot emphasize enough how important it is for us to commit to spending time with teens, to listen, pay attention to their body language and observe how they respond to each conversation about their care. Timing is important as well. When someone is in the middle of a crisis, this is not the time to sit down and review where they are in their medical scenario.

Q: Should open communication be the standard for all adolescents with cancer or is this an individualized approach?

A: Adolescents vary widely in their desire for information and their desire for participation in discussion about their illness and even in their role for decision making. It is important to address each of these topics specifically with the child and their family on an ongoing basis because soon after diagnosis, the teen may not want to be involved in any meetings or hear anything that is going on. However, over time, they may want to be involved. They change, they learn, they develop and they adapt. It is important that we continually assess this. It’s more about where the teen is developmentally. I also find it very helpful to build on the words that the adolescent patient uses to describe their symptoms and then I build upon those words later.

Q: How much say does the adolescent have over their cancer care plan?

A: This varies from center to center and from family to family. The clinical team has a legal, ethical and moral obligation to include youth in discussions about their own health care, yet there is limited guidance on how to go about this. So, it can be challenging. When open communication is established early on, many problems can be avoided. It is very important to understand resistance, concerns, hesitations as well as cultural beliefs and preferences. If a child or teen says that they absolutely do not want to undergo a treatment, then this information must be reviewed with the family and the medical team. Risks and benefits must be explored.

Q: What are some of the biggest challenges with involving adolescents in discussions about their cancer treatment plans?

A: Some decisions may be based upon an immediate event which, at the time, appear to have greatest priority. Further, existing family dynamics can complicate the decision-making process, and that can be challenging. Clinicians must continually assess the extent to which a teen’s own voice is heard within the family system and help them have control over decisions that are feasible and safe.

Q: What advice do you have for physicians when parents are skeptical about involving adolescents in their treatment plan?

A: It is a delicate balance, often overlapping with the distinct needs of both the teen and the family member. Clinicians need to build relationships with both the parents and the teen early on. Inviting both to have individual time with the provider is important. Clinicians should solicit information about how the family has coped with previous life crises. Sometimes parents may be divorced or separated and the child may be caught in between. It is important to assess these factors early on. One’s culture and beliefs also need to be considered throughout cancer treatment. In some cultures, decision making is left completely up to a parent or medical provider. Parents do best when it is recognized that they are the expert of the child, no one knows their child better than they do.

Q: Do you have any final thoughts on this subject?

A: We are always looking for better ways to communicate with adolescents and young adults, and this is especially true when it comes to difficult decisions such as end-of-life care. The goal is always to make sure that the teen’s voice is heard in terms of their concerns, fears and preferences and if cure is no longer possible, how aggressively they wish to be treated. Current research is underway to determine if, how and how often teens preferences are communicated to parents and health care providers and whether their preferences are honored. Communication well-done will have a lasting positive impact on children, teens and young adults with cancer and their families. – by Jennifer Southall

For more information:

Lori Wiener, PhD, can be reached at National Institutes of Health, 10 Center Drive, Room 1-6466, Bethesda, MD 20892; email: wienerl@mail.nih.gov.

Disclosure: Wiener reports no relevant financial disclosures.