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Teenage Cancer Patients Benefit From Advance Stage Planning
Teens with cancer often don't have a say when it's time to make end-of-life decisions. A new pilot program encourages families to talk together about late-stage cancer and create a plan that's sensitive to the child's own wishes.
By Jessica Firger
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WEDNESDAY, March 13, 2013 — Families coping with the possible death of their child from cancer must consider countless details: Should they keep their child in a hospital or at home? Should they request life-support or feeding tubes or dialysis? Should their child be buried or cremated? Unfortunately, when it comes to making these difficult decisions, a family's sadness sometimes prevents them from knowing just what their child wants and needs.
A new study just published in JAMA Pediatrics, tested a pilot program that helps families make plans for the possible death of their teenager but also honor their child's own end-of-life wishes. Maureen Lyon, MD, clinical psychologist and associate professor at Children's National Medical Center and the lead author of the paper, and her team, found that families that went through their program were much better informed about end-of-life decisions. Parents of the teens who went through the program had an understanding of what their child wanted for their future, but families in the control group, who weren’t enrolled in the program, often assumed the opposite of what the child would actually want for their end-of-life care.
“Parents and teens were on the same page, decreasing the chances for conflict or regret if the parent did have to make a decision in the future,” says Dr. Lyon.
For the clinical trial, researchers at Children's National Medical Center in Washington, DC enrolled 60 adolescents between the ages of 14 and 21 with potentially terminal cancer, along with their families. Half participated in a series of three workshops that help to break the ice, begin a discussion about death, and eventually come up with an official end-of-life plan.
"We want to give teens a voice in their own advanced care planning, break the ice, and support the doctors so they have a baseline to work with the families in the future," explains Dr. Lyon."The ultimate goal is to maximize the quality of life and minimize the suffering of these patients."
Cancer is the main killer among children in the United States, taking the lives of nearly 3 out of every 100,000, according to the Centers for Disease Control. Sadly, many families are not prepared to handle planning for the end of their child's life. Lyon says not considering the child's own requests can create resentment and anger among family members and sometimes even legal problems. She adds that a family divided is not one that's equipped to handle the devastating loss of a child.
Lyon first devised the program when she began a study in 2006 on teens who were diagnosed with HIV. One patient, she says, was a young boy who became angry when his uncle began making decisions about his medical care without his permission.
"I started feeling like 'Hey, wait a minute. What do adolescents want?' Nobody asked teenagers what they wanted," she says.
Creating a Plan That Works for Families and Patients
That lead Lyon to the idea of creating a structured program. For the first session in the program, which was supported by the National Institutes of Health and funded by the American Cancer Society, patients and their families each individually fill out a survey about their feelings on planning for advance care, which include whether the child wants to — or should — be involved in decision-making.
The second session addresses more specific questions involving their disease through interviews with facilitators.
In the final session, families and teens filled out the Five Wishes document, a living will that addresses the personal, emotional, and spiritual needs, as well as the medical wishes, of a patient. Five Wishes is an advance directive document that was created in the mid-90s by the nonprofit Aging With Dignity, and was written with the help of the American Bar Association Commission on Law and Aging. Though Five Wishes is typically used for patients 18 and older, Lyon feels the simple nature of document makes the process of planning accessible to younger teens.The document is strictly used as a tool, not as an official legal form.
The simple document addresses five basic needs for end-of-life planning: who should make end-of-life decisions for the patient; what kind of medical treatment the patient does and doesn't want; if the patient would like pain management and other personal care; where they would like to spend their final days and who they'd like to be present; and what the patient would like their loved ones to know, as well as specific arrangements for after the patient dies, such as whether they'd like to be cremated and special requests for their funeral.
"People don’t talk about it. The problem is it’s always assumed that since it’s a family member they‘d know what the child wants," says Lyon. "It’s a new model. It’s more than just completing the advance directive." The success of the pilot study has lead to plans for Lyon to conduct a similar study with a larger pool of teenage cancer patients and their families, which will also be supported by the NIH.
Stacey Berg, director of the palliative care program at Texas Children’s Cancer Center, as well as professor of pediatrics and medical ethics at Baylor College of Medicine, isn't certain that medical facilities need a formal program to help open dialogue among families.
In her own experiences, she's noticed that delicately broaching the subject is enough to start this important conversation and encourage families to make a plan.
"I try to facilitate these conversations, and I do it usually by being very straightforward with them, by encouraging them to talk to each other, and often by saying out loud things they may have not said yet," Berg says. "Family members want to protect their child from getting upset.
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