Chapter 100 Giving Bad News
Medical Knowledge and Patient Care
How we deliver bad news impacts more than just the patient; it affects the entire family. Bad news has been described as “any information that produces a negative alteration to a person’s expectations about their present and future.”1 Bad news may not always seem obvious, but even “simple” problems such as a cleft lip or a birthmark may impact a family’s expectations. Bad news has many forms in pediatrics—ranging from birthmarks that may need surgical removal, genetic disorders that affect the family in the future, chronic disease that has an impact on a young child and family for life, to the impending death of a child.
How bad news is delivered is critical. Years later people remember how and the circumstances under which the news was delivered. The level of physician control, the time it takes to get to the point, the caring about the parents’ feelings, the confidence the physician has, the amount of information given, the amount that the physician shows his or her own feelings, and how much the physician allows parents to talk and express their own feelings have been looked at in various settings.2–4 The common thread in these studies, whether looking at delivering news that a child is dying to something as seemingly simple as a cleft palate, is that parents expect to be given time to talk and be heard during delivery of bad news. When asked by questionnaire years later, parents remember not being asked how they felt. They want the physician to show caring and confidence, but also to allow the parents some time to show their feelings and to talk.1–4
Parents have also expressed a strong desire to be put in touch with other parents in similar situations, yet in one study only 19% were referred.2 This is important to consider when breaking bad news—making the offer to put the parent in touch with other parents or support groups.
Physicians need to be careful about making judgments as to the value of bad news. In looking at the delivery of bad news to families with children born with cleft palate, a treatable disorder without long-term consequences, the parental experience is greatly affected by the manner in which the news is delivered. The experience of being in the delivery room with a child being born disfigured was devastating for some families when they were not prepared—some families reported delays in full disclosure, which was difficult and unnecessarily stressful. Families expressed that they wished to be given basic information right at the time of delivery and more detailed information within the next 48 hours. One mother said, “A lot of the medical staff said, ‘If you have to have a problem, this is a good problem to have. Other problems are much worse.’ My response was that this was in fact the biggest problem right now in my life.”3 One has to be careful about letting one’s opinion affect the delivery of information.
Parents of children with Down syndrome were questioned as to their experience when the bad news was delivered and what they wished would have happened. They expressed that it was important for both parents to hear the news together privately and then to be able to spend some time alone preferably with their child to process the diagnosis. They wished for follow-up 24 to 48 hours later with more information.2 Parents of children with developmental delay felt that they could have been given more information at the early encounters.2 Parents recalling their experiences receiving bad news also remember the circumstances—being given the news in the middle of rounds, where they felt rushed and felt that the doctor was protecting himself or herself from his or her own emotions by not facing them, as opposed to other physicians who took the time to sit down.5
Complete and honest information is important to families as well. One must be prepared to address questions that come up with different forms of bad news. In looking at end-of-life care, parents commented on conflicts between physicians and wished that they could at least meet with all parties involved rather than not understanding all the issues at stake.4 Information needs to be simple and nonconflicting.6
One key issue in pediatrics is whether or not the child should be part of the discussion. Disclosure to the child should be encouraged when the family is ready. The emphasis needs to be on supporting the family and helping them with their decisions, not forcing them to make a decision that they are uncomfortable with.7 In a study looking at parents of children who died from malignancy, parents were asked by questionnaire whether or not they had disclosed to the child that the child was going to die. Thirty-four percent had, and none of those parents had regrets about having talked to their children. Sixty-seven percent had not, and of those 27% had regrets that they had not spoken with their children.8
In the intensive care unit setting in particular, diagnoses are often discovered and children often die. The team needs to be aware of the impact of body language. Moreover, the language used and body language can give the family the sense that you have given up on them when their child is dying, at a time when they may need your presence more than ever. In a study exploring a family’s desire to meet with physicians even after their child’s death, it was found that parents did want to meet and to have a chance to clear the air and settle unresolved questions. They felt the lack of that meeting showed lack of physician interest.9 In contrast, positive recollections of physicians’ breaking bad news were described in the setting where the doctor stayed involved even when the child was no longer on that physician’s service.5
