Dr. Jennifer Needle is a pediatric intensive-care physician who has seen many young adults and adolescents with cancer. These young patients were admitted to the ICU due to life-threatening complications from their cancer treatment.
Sometimes, Needle had to have serious discussions about the end of life with patients and their guardians. These conversations were new to many.
Guardians and parents often want to protect young adults’ mental health by avoiding difficult conversations about their medical care. Needle stated that her professional experience has led her to believe differently.
She spent time with adolescents suffering from cancer and said that it was clear that many of them were aware they were dying. They were not allowed to express their opinions or share their views about how aggressive their medical team should be in the event of further complications.
Needle was not comfortable with this reality. She said, “These are capable, independent, and developing people who should be able to have an opportunity talk about what it would like.”
Needle believes that shielding young people from the truth of their condition through avoiding important conversations is not a way to protect their mental health. She said that while it may seem natural to think that talking about death would make someone depressed, the truth is that these children already worry about their mortality. Talking about this worry can actually reduce their anxiety and depression. It is not possible to forget about it, just like everything else.
This belief led to Needle becoming an associate professor of bioethics and pediatrics at the University.
University of Minnesota
She teamed up to a group of colleagues from across the country to conduct a randomised clinical control trial that examined the effectiveness of pediatric advance-care plan conversations for adolescents with cancer and their family members. The study was titled “The Future of Pediatric Advance-Care Planning Conversations for Teens with Cancer and Their Families”.
The “Effect of the Family-Centered Advanced Care Planning for Teens With Cancer Intervention on Sustainability of Consensus About End-of Life Treatment Preferences” was published in the this summer.
Journal of the American Medical Association
A three-session intervention on advance care planning and ending-of-life decisions for young patients with cancer and their families was found to be effective in increasing parents’ understanding of young people’s treatment goals and values.
Needle stated that while advance care planning is a common topic among older adults, it is not a standard of practice in pediatrics. This means that most adolescent patients with cancer have not been able participate in their advance care decision-making.
Needle stated that the findings add to the evidence base of best practice recommendations to guide clinicians in the when, how, who, and what of end-of life conversations with adolescents with breast cancer. It is worth spending the time and effort to support adolescents in their right to have a voice and enable them engage in difficult conversations. It is important that we understand their needs and what they would tolerate if it happened.
Needle stated that she has worked with young cancer patients and their families, and that it is clear that many of them have a complete understanding of the disease.
“I have seen patients who have suffered painful complications during treatment and were the first to realize they would not survive,” she stated. “They have decided that they would rather do something with their time than remain in the hospital,” she said.
This longitudinal study involved 126 young adults and adolescents aged 14-21 who were diagnosed with cancer, as well as their parents and surrogates. The total number of participants was 252.
The Family-Centered Advanced Care Planning Intervention for Teens with Cancer (FACETC) was used to help the intervention group. This program gives teens with cancer and their families the opportunity to have difficult conversations about difficult topics. Participants in the intervention group met with trained interventionalists three times. The intervention was not offered to the control group. Participants in the study were provided with pamphlets on advance care planning.
Needle explained that the facilitated conversations allowed the adolescents to discuss whether or not they would like to continue treatment in certain circumstances. If this happens, the parent can tell a provider that they had a conversation about it and he said that this situation was not for him.
Needle stated that filling out an advanced care directive can seem daunting to young people. However, researchers made sure to let participants know they were not required to do anything that would make them uncomfortable. Although health care directives for individuals younger than 18 aren’t legally binding, facilitators feel the exercise helps families have important conversations.
Needle stated that a span style=”font weight: 400 ;”>” We wouldn’t force a 15 year old to talk about death.” This was voluntary. “This was completely voluntary. .”
Needle and her coworkers discovered that most study participants thought the mediated conversations were worthwhile. Needle stated, “We asked participants if they found the mediated conversations useful and beneficial.” Ninety-seven per cent said yes. We asked, “Was it dangerous?” One percent answered yes. We asked, “Was it harmful?” Four percent answered yes. We then asked, “Was it worth it?” Ninety-seven per cent of those in the intervention group answered yes.
Participants were also asked about their experiences in the study by researchers.
A mother of a 17 year old said that the mediated conversation helped her to understand her child’s thoughts about cancer treatment and her treatment.
A patient with cancer aged 18 explained that the conversations helped them talk about the elephant in their room. “I also realized that you are not invincible.” It’s difficult to imagine our own deaths, which is why we aren’t able to comprehend it. However, it’s something I am always aware of.”
Needle and her colleagues believed that having these kinds of conversations with adolescents with cancer and their families could make a difference in the mental health of those teens. She stated that their research confirms this belief.
span style=”font weight: 400 The goal of work such as this is to show that advance care planning conversations are not harmful and that they don’t create anxiety or depression, or any other negative complications for patients or their families,” she stated. It also shows that these conversations are valued and productive and have a long-lasting benefit for patients and their families.
Honesty is a key to a healthy relationship
Needle and her colleagues believe that advance care planning is beneficial for the mental health of young adults with cancer and their families. However, not all agree.
span style=”font weight: 400 ;”>” Part of the reason people feel uncomfortable about advance care planning, Needle stated. It’s false. It is important to encourage people to consider what they want and what they don’t want.
She said that the young people who took part in Needle’s research were not encouraged to limit any medical intervention. It’s not their goal to make them not want treatment. It is important to get them to consider why they want it or not.
It is hoped that starting conversations about topics families might have avoided out of fear can actually open up dialogue and allow young people to freely discuss their most pressing concerns.
Needle stated that it is important to have these conversations when the person is healthy and not too sick or in a hurry. “Hence, the name, “Advance Care Planning.”
Critics of this approach may argue that it can be traumatizing for guardians or parents. Needle believes parents already think about the topic, regardless of whether they discuss it openly or not.
span style=”font weight: 400 There is no parent whose child has been given cancer treatment who hasn’t thought their child could die.” she stated. She said that mediated conversations can help families to have important discussions and ease some of their anxiety.
It doesn’t hurt to have these conversations mediated and facilitated by a professional. She added that “This allows adolescents to voice their opinions and to engage with their parents about their feelings about it.” It can be very beneficial for young people to have the opportunity to express their feelings .”
Needle stressed that she does not want to ignore that young people are often affected by cancer treatment and diagnosis. She said that her study considers this and that she hopes these interventions can help to ease some of the emotional burden.
span style=”font weight: 400 We know that cancer in adolescence can have serious mental consequences,” she stated. “Young people treated for cancer have high rates of anxiety and depression. Depression rates in adult survivors of childhood cancers are higher than those who survived them. It is also known that having open conversations about illness can have positive effects on their mental health span>