Doctors' guidance on how to talk to terminally ill teens

Speaking to terminally ill patients about their disease is always difficult, but the conversation becomes even more delicate when a child or teen is involved.

To shield their children from a devastating diagnosis, some parents may even go so far as to keep their child in the dark about the severity of their illness. 

“Out of fierce love, they wish to protect their child from the immeasurable amount of pain they, the parents, are experiencing from the knowledge of their child’s pending death,” Dr. Lisa Humphrey, medical director of Palliative Care at Nationwide Children’s Hospital, told CBS News.

But a paper published today in JAMA Pediatrics argues that while that strategy may be less painful initially, when it comes to adolescents or teens with a life-threatening illness, telling the truth is the best option.

The author note that in one study of 429 bereaved parents, “none of those who talked to their child about the child’s impending death regretting having done so; however, 27% of those who avoided the topic regretted the missed opportunity.” In another study, while a quarter of teens with cancer said conversations about planning for possible poor outcomes made them feel sad, more than 9 out of 10 believed it was helpful.

Humphrey, who was not involved in the study, says kids, especially adolescents, often know more about their condition than they let on, in part to protect the family from devastation for as long as possible and perhaps to even help maintain their parents’ hope that everything will be fine.

Doctors, too, sometimes unconsciously avoid addressing the situation.

“Pediatricians often enter the field of pediatrics because it has such a remarkably low death rate and a very high rate of cure or life prolongation,” Humphrey said. “When they cannot save a patient, it is a devastating blow to their sense of competency. On a frequent basis, I witness pediatricians crying over the realization that their patient will die and/or berating themselves that they could not provide a cure.”

This can translate to a reluctance to fully disclose all information to the young patient out of fear that they will feel hopeless and make an already difficult situation worse, she said. 

So how can doctors and parents navigate these heart-wrenching conversations with young people in an honest, yet supportive and sympathetic way?

In the JAMA paper, Dr. Abby R. Rosenberg, medical director of Seattle Children’s Adolescent and Young Adult Oncology Program,  offers some guidance.

She and her colleagues reviewed ethical justifications for and against having direct truth-telling conversations with adolescents, as well as published ethical and practice guidance.

“In most cases,” they conclude, “clinicians should gently but persistently engage adolescents directly in conversations about their disease prognosis and corresponding hopes, worries, and goals.” 

These conversations should happen continuously over a period of time to allow the physician to develop a relationship with the family and understand their values, the authors say.

“There is never going to be a very clear right or wrong answer that is true for every single family,” Rosenberg told CBS News. “But in general, being able to explore what’s important to the family and how they want information and being able to do that over many meetings over a long period of time is probably helpful in almost every single case.”

The paper notes some specific phrases that may be helpful in navigating these difficult conversations.

Rosenberg says the way a physician initially starts the discussion with the family is important. “A lot of times I’ll simply say to a parent, ‘Wow, you guys have been through a lot. Can you share with me how you prefer to receive information. Or how do you prefer to receive information in your family.’ It seems very self-evident, but that’s the kind of information that enables me to guide them in the future when I need to deliver it,” she said.

As a rule, Rosenberg says she also establishes from the beginning that she will always be honest with the family and share what she knows. She says she will ask questions like “What do you think [the child] knows about their disease?” If she suspects the parents may be withholding information, the question can help begin the conversation about getting the patient more involved.

Being culturally sensitive to the family’s values is also important, experts say.

“I am increasingly struck by the importance of understanding every family’s micro-culture,” Humphrey said. “By that I mean, while a family may identify as being Catholic, [or] being from India, etc., these generalized cultural descriptions are only a starting point for a health care provider intent on optimizing collaboration. How a family interprets their many-faceted cultural identifiers is integral to where they place truth-telling, dying, and what it means to be a good parent and a good child.”

Finally, while the paper focuses mostly on guidance for physicians, Rosenberg offered some advice to parents to help them navigate these conversations with their teens.

“A lot of the same terminologies work, so starting conversations early and ongoing with their child is important,” she said. “Asking them what’s important to them and how you can make sure that the doctors are communicating what they need to hear.”

Rosenberg admits that these discussions are scary for parents – but in families facing a medical crisis, they are necessary.

“As parents, we want so desperately to protect our children from harm,” Rosenberg said, “and I think the gift that that provides is enabling yourself as a parent to hear what is important to your child and then support that. And in so doing you can protect your child in a way that you never thought you would have to learn, but you’re still protecting your child nevertheless.”