As a critical care pediatrician, Dr. Jennifer Needle has treated a number of adolescents and young adults with cancer. These young people have come to intensive care because they are experiencing life-threatening complications from their cancer treatment.
At times, Needle and his fellow physicians have had to engage in 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 the mental health of young people by shielding them from difficult discussions about their medical care. Needle said her work experience leads her to think differently.
After spending time at the bedside of teenage cancer patients, she said: “It became clear to me that many of these young patients were fully aware that they were probably dying and that they weren’t hadn’t had the opportunity to share their thoughts and opinions on how aggressive they wanted their medical team to be if they were to have ongoing complications from their illness.
Needle was uncomfortable with this reality. “These are capable, empowered, developing people who should be given the opportunity to speak whatever they 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 natural to think it would make someone depressed to talk about dying, the reality is that these kids are already worried about dying,” she said. “The ability to talk about this worry actually lowers their levels of depression and anxiety. Like everything else, not talking about it doesn’t make it go away.
With this belief in mind, Needle, associate professor of pediatrics and bioethics at the University of Minnesota, has partnered with a group of her colleagues from across the country to create a randomized controlled clinical trial examining the effectiveness 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 on advance care planning and end-of-life decision-making for young people with cancer and their families has helped increase parents’ understanding of young people’s treatment goals and values.
Although advance care planning has been a regular conversation among older adults for some time, it’s not a standard of care in pediatric practice, Needle said. This means that the majority of teens with cancer have not been able to participate in their own advanced care decision-making.
“Our findings contribute to the evidence base for best practice recommendations to guide clinicians on the when, who, what and how of end-of-life conversations with adolescents with cancer,” Needle said. “Helping teens express themselves and enabling them to engage in difficult conversations is worth the effort. We need to understand what is important to them, what would be intolerable if that happened.
Needle said her experience working with young cancer patients and their families has made it clear that many of these teens have a full understanding of the reality of their disease — sometimes earlier than their parents.
“I’ve had patients who had painful complications from treatment and I was the first to realize they weren’t going to survive that,” she said. “They decided they’d rather do other things with their time than stay in the hospital.” This, she continued, underscored the importance of those early conversations: “There have been a number of patients in their late teens who at some point expressed, ‘I don’t want chemo anymore. 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 aged 14 to 21 who had been diagnosed with cancer and their parents and surrogates, for a total of 252 participants.
By using the Family-centered advance care planning intervention for adolescents with cancer (FACE-TC), a program that poffers teens with cancer and their families the opportunity to have stimulating conversations about difficult topics, members of the intervention group met three times with trained counsellors. Participants in the study’s control group received brochures on advance care planning, but did not benefit from the intervention.
The facilitated conversations, Needle explained, “allowed adolescents to say whether they wanted to continue treatment if specific circumstances arose and why they made that choice.” The idea behind these conversations “is to involve the child and his parents on these topics. So, if any of these situations arise, a parent can tell a provider, “We had this conversation about this and he told me that this situation would not be desirable for him,” he said. she declared.
Because completing an advance care directive can feel overwhelming for a young person, Needle said the researchers wanted to let participants know they weren’t required to do anything that made them feel uncomfortable. . Health care guidelines completed by people under 18 are not legally binding – but the facilitators felt the exercise helped families have important conversations.
“We would never force a 15-year-old to talk about his death,” Needle said. “It was completely voluntary. We never force the conversation on the children.
What Needle and his colleagues found was that the majority of study participants found the high-profile conversations worthwhile. “We asked participants, ‘Was this helpful and helpful?’ said Needle. “Ninety-seven percent said yes. We asked, “Was it harmful?” One percent said yes. We asked, ‘Was that hurtful?’ Four percent said yes. We asked, “Was it worth it?” 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 the mediated conversations helped her understand how her child felt about his cancer and his treatment: “When we started this study, I was blown away not knowing absolutely what she was feeling.
Another participant, an 18-year-old cancer patient, explained that the conversations helped them talk about the elephant in the room: “I also recognized that you are not invincible. We tend not to be able to imagine our own death, so it’s hard to imagine it, but it’s still something I’m aware of.
Going into the research, Needle explained that she and her colleagues believe that initiating these kinds of conversations can have a positive impact on the mental health of teens with cancer — and with their family members. She said the results of their research confirmed this belief.
“The goal of work like this is to demonstrate primarily that initiating conversations about advance care planning is not harmful, that we are not creating anxiety or depression or negative complications for patients and their families,” she said. “It also demonstrates that these conversations are wanted and fruitful and have long-term benefits for patients and their families.”
Honest conversations are healthy
Although Needle and his colleagues are convinced of the mental health benefits of advance care planning for young people with cancer and their families, not everyone agrees.
“Part of the reason people aren’t comfortable with advance care planning is that there’s a misconception that there’s pressure for someone to say, ‘I don’t want to do nothing. Or sign a (do not resuscitate order),” Needle said. “That’s not true. The goal is to get people to think about what they would like or not want.
Young people who participated in Needle’s study were not encouraged to limit possible medical interventions, she said. “It’s not the goal to make them not want treatment. The goal is: get them to think about why they would or wouldn’t want to.
The idea is that initiating conversations about topics that families may have avoided out of fear could actually help open the dialogue and allow young people to feel free to talk about their deepest concerns.
“It’s good to have these conversations at a time when they’re healthy, when they’re not too sick or need to make any pending decisions,” Needle said. “Hence the name ‘advance care planning’. It is better to do it now than when we are holding a breathing tube above 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 thinks that whether they talk about it openly or not, parents are already thinking about it.
“There is no parent whose child has been diagnosed with cancer who has not thought their child might die from it,” she said. The mediated conversations help alleviate some of the fear and anxiety and give families permission to carry out important discussions, she said.
And it doesn’t hurt to have these conversations mediated by a trained professional, she added: “It allows the teenager to voice their opinions and have a dialogue with their parents about how they feel at home. about what he says. Giving young people the chance to express themselves can be beneficial in all respects, especially when it comes to their mental health.
Needle stressed that she doesn’t want to ignore the very real fact that the diagnosis and treatment of cancer carries its own burden on young people’s mental health. Her study takes that into account, she says, and she hopes these interventions might help ease some of that emotional burden.
“We know that the mental health consequences of cancer in adolescence are significant,” she said. “Young people who are being 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 such as maintaining conversations about illness all have positive effects on their mental health.
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