As a pediatric intensive care physician, Dr. Jennifer Needle has treated a number of adolescents and young adults with cancer. These young people came into the ICU because they are experiencing life-threatening complications of their cancer treatment.
Sometimes, Needle and her medical colleagues had to initiate serious end-of-life discussions with these patients and their parents or guardians. Many had never had these kinds of conversations before.
Parents and guardians often want to protect young people’s mental health by shielding them from difficult discussions around their medical care. Needle said that her professional experience leads her to think differently.
After spending time at the bedside of adolescents with cancer, she said, “It became clear to me that many of these young patients were fully aware that they were likely dying and they weren’t given an opportunity to share their thoughts and opinions about how aggressive they wanted their medical team to be if they were to have continued complications from their disease.”
Needle was uncomfortable with this reality. “These are capable, autonomous, developing people who should have an opportunity to talk about what they would want,” she said.
Protecting a young person from the reality of their condition by avoiding important conversations does not protect their mental health, Needle believes. “While it might be one’s natural thought that it would make someone depressed to talk about dying, the reality is these kids already worry about dying,” she said. “The opportunity to talk about that worry actually lowers their rates of depression and anxiety. Like everything else, not talking about it does not make it go away.”
With that belief in mind, Needle, an associate professor of pediatrics and bioethics at the University of Minnesota, teamed up with a group of her colleagues from around the country to create a randomized clinical control trial examining the efficacy of pediatric advance-care planning conversations on adolescents with cancer and their families. The study, titled “Effect of the Family-Centered Advance Care Planning for Teens with Cancer Intervention on Sustainability of Congruence About End-of-Life Treatment Preferences,” was published this summer in the Journal of the American Medical Association.
The study found that offering a three-session intervention about advance care planning and end-of-life decision making for young people with cancer and their families helped to increase parents’ understanding of the young people’s goals and values in treatment.
While advance care planning has been a regular conversation among older adults for some time, it has not been a standard of care in pediatrics practice, Needle said. This means that the majority of adolescent cancer patients have not been able to participate in their own advance care decision making.
“Our findings contribute to the evidence base of best-practice recommendations to guide clinicians on the when, who, what and how of end-of-life conversations with adolescents with cancer,” Needle said. “Supporting adolescents in having a voice and enabling them to engage in difficult conversations is worth the time and effort. We need to understand what’s important to them, what would be intolerable if it were to occur.”
Needle said that her experience working with young cancer patients and their families has made it clear that many of these adolescents have a full understanding of the reality of their disease — sometimes sooner than their parents.
“I’ve had patients who have had painful complications of treatment and have been the first to realize that they are not going to survive this,” she said. “They’ve decided they would rather do something else with their time than stay in the hospital.” This, she continued, has underscored the importance of these early conversations: “There have been a number of patients in their late teens who have expressed at some time, ‘I don’t want more chemo,’ or, ‘I don’t want to go on a ventilator if my lungs stop working,’ but it was too late.”
The longitudinal study was conducted with a sample of 126 adolescents and young adults age 14-21 years old who had been diagnosed with cancer and their parents and surrogates, to a total of 252 participants.
Using the Family-Centered Advance Care Planning intervention for Teens with Cancer (FACE-TC), a program that provides adolescents with cancer and their families an opportunity to have challenging conversations about difficult subjects, members of the intervention group met three times with trained interventionalists. Participants in the study’s control group were given pamphlets about advance care planning but did not get the intervention.
The facilitated conversations, Needle explained, “allowed the adolescents to talk about whether they wanted to continue treatment if specific circumstances came up and why they made that choice.” The idea behind these conversations “is engaging the child and their parents on these topics so, should one of these situations arise, a parent can say to a provider, ‘We had that conversation about this and he told me this situation would not be desirable for him,’” she said.
Because filling out an advance care directive may seem overwhelming to a young person, Needle said researchers made a point of letting participants know they weren’t required to do anything that made them feel uncomfortable. Health care directives completed by individuals under 18 are not legally binding — but facilitators felt the exercise helped the families have important conversations.
“We’d never force a 15-year-old to talk about dying,” Needle said. “This was completely voluntary. We never force the conversation on children.”
What Needle and her colleagues discovered was that the majority of study participants found the mediated conversations to be worthwhile. “We asked participants, ‘Was this useful and helpful?’” Needle said. “Ninety-seven percent said yes. We asked, ‘Was it harmful?’ One percent said yes. We asked, ‘Was it hurtful?’ Four percent said yes. We asked, ‘Was it worthwhile?’ Ninety-seven percent of the intervention group said yes.”
The researchers also asked participants about their experience in the study.
One participant, a mother of a 17-year-old, said that the mediated conversations helped her understand what her child was thinking about her cancer and its treatment: “When we started this study, I was blown away that I had absolutely no idea about how she felt.”
Another participant, an 18-year-old cancer patient, explained that the conversations helped them to talk about the elephant in the room: “I also recognized that you’re not invincible. We tend to be not able to fathom our own death, so it’s hard to even envision it, but it’s always something that I’m aware of.”
Going into the research, Needle explained that she and her colleagues felt that initiating these kind of conversations could have a positive impact on the mental health of adolescents with cancer — and with their family members. She said their research findings confirm that belief.
“The goal of work like this is to demonstrate mostly that initiating conversations around advance care planning is not harmful, that we are not creating anxiety or depression or any negative complications for patients and their family,” she said. “It also demonstrates that these conversations are desired and fruitful and they do have long-term benefit for the patients and their families.”
Honest conversations are healthy
Though Needle and her colleagues are convinced of the mental health benefit of advance care planning for young people with cancer and their families, not everyone agrees.
“Part of the reason people are uncomfortable about advance care planning is there is a misconception there is pressure to get someone to say, ‘I don’t want anything done.’ Or sign a (do-not-resuscitate order),” Needle said. “That’s not true. The goal is to get people to think through what they would want — or what they would not want.”
The young people who participated in Needle’s study were not encouraged to limit possible medical intervention, she said. “It’s not the goal to get them to not want treatment. The goal is: Get them to think why they would or would not want it.”
The idea is that initiating conversations about topics that families may have been avoiding out of fear might actually help open dialogue and let young people feel free to talk about their deepest concerns.
“It is good to have these conversations at a time when they are healthy, when they aren’t too sick or need to make imminent decisions,” Needle said. “Hence the name, ‘advance care planning.’ It’s better to do that now than when we are holding a breathing tube over you and asking if you want it in your body.”
Some critics of this approach might say that these discussions can also be traumatic for parents or guardians. Needle believes that whether they talk about it openly or not, parents are already thinking about the topic.
“There is no parent whose child has been diagnosed with cancer who has not thought that their child might die from this,” she said. The mediated conversations help ease some of the fear and anxiety and give families permission to complete important discussions, she said.
And it doesn’t hurt to have these conversations mediated by a trained professional, she added: “That allows the adolescent to express their opinions and engage with their parents about how they feel about what they are saying. Giving young people an opportunity to express themselves can be beneficial in every way — especially in regards to their mental health.”
Needle emphasized that she doesn’t want to ignore the very real fact that cancer diagnosis and treatment carry their own mental health burden for young people. Her study takes that into account, she said, and she hopes that these interventions could help lighten some of that emotional load.
“We know the mental health consequences of cancer in adolescence are significant,” she said. “Young people who are treated for cancer report high rates of depression and anxiety. Adult survivors of childhood cancers have higher rates of depression. We also know that interventions like maintaining conversations about illness all have positive impacts on their mental health.”