Breaking bad news in the paediatric ICU: need for ethical practice

Communicating with the parents of children who are extremely sick or dying in the intensive care unit (ICU) is an extremely challenging task. The physician in charge of intensive care, apart from administering the routine medical treatment, has other vital roles to play, such as communicating the poor prognosis, advising the guardians on decisions regarding the withdrawal of life support, requesting permission for an autopsy and initiating the process of organ donation (1). Intensivists play the unique role of helping parents prepare for the child’s death and ushering in the grief process which will help the family remain functional and intact. Allowing parents to play an active role in management decisions and informing them about the patient’s condition at every stage of treatment can build their trust and help them prepare to face worse situations.

The manner in which the bad news is discussed is extremely important to most parents and a casual approach can seriously add to their mental agony (2). Unlike in the West, the parents’ emotions and bereavement following their child’s death are often overlooked in India, the more so in government hospitals. Lack of empathy, crowded hospitals, overworked doctors and understaffed ICUs could be responsible for this, but these factors are certainly not justifiable.

Informing parents about their child’s death is probably the most difficult job even for an experienced paediatrician. This delicate matter is dealt with mostly by residents and junior faculty members (rather than consultants in charge of the child), who spend more time with the patients, especially “out of hours.” It is often assumed that residents are good at communication, though studies have shown that most physicians are not good at communicating bad news to parents (3). The problem becomes more acute if they do not know the language spoken by the parents. The common errors committed are making a brief, rapid declaration, not answering the parents’ queries and not spending enough time with the parents. Such approaches can send out wrong signals, such as leading the parents to suspect that there has been a “cover up.” They can worsen the parents’ anxiety, make it difficult for them to accept the news, complicate the subsequent bereavement process and even result in litigation (4). Parents want empathetic, honest and complete information, communicated in lay language and at a pace that is easy to comprehend. Hiding true facts regarding the disease or prognosis from the parents can lead to false hopes and feelings of fury, betrayal and distrust (2)

Discussing donation of the child’s organs has been found to have a positive effect on bereaved parents and can help them cope with the bad news (4). On the other hand, it can also be a double-edged sword as parents sometimes perceive it as an opportunistic act and a sign of complete lack of sensitivity on the part of the doctor. However, if the subject is handled with sensitivity, the parents may derive solace from the prospect that their child’s organs will continue to live and this can help them cope with the traumatic event. The personal belongings of the dead child, however trivial they may be, are extremely important to the parents. Be it a dress, hair clip or toy, the staff should take care to return it to the parents. A study on bereaved parents showed that nearly all of them wished to spend some time with their dead child, even if the body was mutilated (4).

The junior doctors should be sensitised to this serious issue and must be trained adequately to deal with the bereavement of parents. The assessment of communication skills in simulated encounters with parents and feedback from senior faculty members can improve the doctors’ ability to counsel and break bad news to parents. Such an exercise has been found to improve the parents’ level of trust and make junior doctors feel more confident (5). Training of a similar nature should be incorporated into the postgraduate curriculum.

Being empathetic, using the right words, speaking in a clear and unhurried manner, making sure that one’s look and body language convey concern, choosing a private area for discussion and giving the parents enough time are all factors that are vital to the task of breaking the bad news with sensitivity.

If the doctor handles the subject of a child’s death in an ethical manner, it makes a huge difference to the parents. Even from the doctors’ perspective, this approach is associated with personal satisfaction and a sense of fulfilment, once one goes beyond the blow of losing the patient. The content of our medical textbooks and curriculum is inadequate with respect to the skills needed for the ethical management of death (6). Due to the lack of formal training in this area, it is up to the physicians to develop their own skills and this largely comes with experience. It is worth remembering the two important prerequisites of the successful management of death – empathy for the parents and sensitivity to their feelings.