January 29, 2004
Patience, listening are key to discussing a cancer diagnosis with parents of young patients, paper reports
A conversation that touches parents' deepest fears — learning that their child has been diagnosed with cancer — is one where a physician's approach can make a profound difference.
In a paper in the February issue of the Journal of Clinical Oncology, pediatric oncologists Jennifer Mack, MD, and Holcombe Grier, MD, of Dana-Farber Cancer Institute and Children's Hospital Boston offer practical guidelines based on their own experience in breaking bad news to parents of young cancer patients. One of their chief lessons is that, if handled properly, the conversation can actually reduce parents' anxiety by replacing initial doubts and fears with solid information, the beginnings of a treatment plan, and an assurance that their concerns will be heard.
Holcombe Grier, MD, and Elizabeth Tyra
"We know from published research, as well as our own practice, that the way bad news is first communicated can impact, for better or worse, people's adjustment to a diagnosis," says Mack, the paper's lead author. "And parents' understanding of their child's condition influences their choices for therapy.
"The method we describe in the paper recognizes that the stress of receiving bad news may prevent parents or family members from retaining information," she continues. "It's crucial that the exchange of information among the patient, family, and physician continue as the shock of the initial diagnosis fades."
Mack and Grier write that the "Day One Talk" — when physicians and parents first meet to discuss a diagnosis — should deal with three subjects: the nature of the diagnosis; the treatment and its goals; and possible causes of the disease.
"When there's a diagnosis of cancer, it's important for physicians to use that word, so parents can confront it," Mack comments. "The word 'cancer' has different meanings in different families, but for many, loss is a part of their personal experience with the disease. We want to help them understand what cancer means for their child."
During the discussion of treatment, physicians should give a clear picture of the likelihood that the disease can be cured. "Often for pediatric cancer, we have good treatments, and the goal is to cure the child," Mack remarks. "When cure is unlikely, or when the goal of treatment is palliation, it is important to explain that also."
Parents should be assured that nothing they or their child did, or failed to do, caused the cancer, Mack and Grier advise. If it is an inherited condition (the exception rather than the rule), that should be explained straightforwardly.
From there, the physician can turn to what the family needs to know before treatment begins: where the cancer began and whether it has spread to other parts of the body, the impact that therapy is likely to have on the child's life, potential side effects, the need to sign a treatment consent form.
Because parents are apt to be overwhelmed by the amount of information they've received and emotionally exhausted by the uncertainty leading up to the diagnosis, caregivers should acknowledge the enormity of this event in the family's life. Letting parents know about resources available to them — support groups, counseling services, educational materials on cancer — can be useful at this point.
"Finally, we tell parents that they are part of a team," Mack and Grier write. "Our role is to teach them about their child's disease and to plan and supervise the treatment. Their role is to teach us about their child and themselves, because this will help us provide better care. We remind families that we will be with them for as long as their child or they need us."
"The heart of the encounter is not in what the physician says, but in the patient and family's response," they write. "Careful listening, assessment of their understanding, and a willingness to be flexible" will stand physicians in good stead during these discussions.
The technique has been incorporated into the fellowship program for training pediatric oncologists at Dana-Farber and Children's. And although it was designed for meetings with parents of children with cancer, the method can be helpful for conveying bad news to patients and families in general, the authors say.
"One of the lessons of our experience has been the diversity of individual needs and preferences, and the impossibility of finding one approach that works for every family," they state. "Inherent in any discussion should be a willingness to follow a family's lead. This beginning to the therapeutic relationship often teaches us most clearly what is extraordinary about our patients and their families."
Dana-Farber Cancer Institute is a principal teaching affiliate of the Harvard Medical School and is among the leading cancer research and care centers in the United States. It is a founding member of the Dana-Farber/Harvard Cancer Center (DF/HCC), designated a comprehensive cancer center by the National Cancer Institute.
