Child with cancer can make mature choices

In consultations about childhood cancer and in discussions about the treatment options, health care providers should find a balance between the preferences of the parents and the child. Their needs for information and their preference whether or not to participate in medical decision making may differ. This is stated by researchers of NIVEL and the university medical centres of Groningen, Nijmegen and Rotterdam in a publication in Psycho-oncology.

According to current guidelines, children with cancer should be informed about their illness and treatment. Children between the ages of 12 and 16 have the right to participate in medical decision making. Children older than 16 years have the right to decide for themselves how or whether they want to be treated. Parents generally agree with these guidelines, but not all children do.

Shielding
NIVEL researcher Marieke Zwaanswijk: “Many parents tend to shield their children from upsetting information, for instance young children or children who are easily frightened. And some children do not want to know everything. I saw, for instance, a child who plugged in his I-pod in the middle of a consultation with his physician. But other children say: ‘This is about me, so I want to know everything’. Prior to a consultation in which the child is present, parents often choose to have a consultation with the physician in the absence of their child. However, many children  – particularly older ones – want to know what has been discussed. You have to beware of suspicion.”

Participating in decision making
Children’s participation in decision making may range from choosing a light form of sedation in case of a painful examination, to opting for a slightly longer life with a difficult and unpleasant treatment or even refrain from such treatment. Particularly older children want to be able to make these decisions themselves. Marieke Zwaanswijk: “Particularly children who have been treated for quite some time, know so much about the illness and treatment that they may make different decisions than their parents.”

Descriptions of situations
In this study, so-called vignettes were presented to groups of parents, children with cancer and survivors of childhood cancer. Vignettes are brief descriptions of realistic situations, followed by questions such as: how would you react in this situation? In addition to preferences regarding the child’s involvement in information exchange and participation in decision making, the study participants indicated the importance of physicians’ empathy in consultations. They want physicians to pay attention to their feelings of fear and distress during consultations.

The study was financially supported by the Dutch Cancer Society.

Cooperating partners
- University Medical Center St. Radboud, Nijmegen, The Netherlands
- University Medical Center Groningen, University of Groningen, The Netherlands
- Erasmus University Medical Center - Sophia Children’s Hospital, Rotterdam, The Netherlands