Understanding Anger in Parents of Dying Children
Am Fam Physician. 1998 Oct 1;58(5):1211-1212.
During my internship, I took care of a seven-year-old girl with a rare form of lymphoma. Admittedly I was inept in some respects, but I was not prepared for the mother's reaction to me. It seemed that no matter what I did, she questioned my competence. The first day I entered the room she hissed,“How dare you come in and bother my daughter with mindless interruptions?” Another time, she said, “Don't you know what you're doing?” when she overheard a radiologist suggest that I had ordered an unhelpful test. On yet another occasion when her daughter was late being picked up for radiology, the mother shouted at me that it was my job to see that things ran smoothly. She glared at me and berated me in front of her daughter.
Although I knew this mother also had treated other doctors harshly, neither that knowledge, nor the realization that she was under a terrible strain as a result of her daughter's illness, helped me gain a better perspective. Because of her extreme hostility, I did not feel I could summon the emotional stamina to confront her. During her mother's angry outbursts, the daughter would sit quietly in her bed, but when her mother wasn't around, she and I would sneak a smile or chat with each other in a friendly manner.
Finally, I could no longer bear it. I asked to be taken off the case. My request was granted and although I felt I had failed, never did failure bring such sweet relief.
While this parent may have been difficult under any circumstances, it is likely that this particular situation played a substantial role in the parent's anger and hostility. Health care professionals, especially if they have never been a patient or a parent themselves, may not be sensitive to the profound emotions caused by having a sick child or to the stresses associated with hospitalization, and they may inadvertently exacerbate the problem.
The mother described here is coping with a child who may be terminally ill. It is common for parents in this situation to be angry that their child is the one who is sick. This mother may feel guilty that she was unable to keep her child safe and healthy, even though that guilt is obviously irrational. Such guilt often manifests as overprotectiveness. In addition, the mother may be grieving about her impending loss and may need extra time to be with her child. Strong emotions tend to contribute to a parent's need to maintain the role as the child's primary caregiver and protector.
At the same time, hospital routines can be very distressing and disruptive to many families. Patients often have many people coming into their room, each to do some small task as part of “standard routines.” These frequent disruptions interfere with sleep or with normal routines, intrude on private time between the child and the parent, and often usurp the parent's role with his or her child. Usually, little thought is given to how each disturbance adds to the stress of the child and the family. In particular, the parent may view the care provided by trainees—whether medical students or residents—as an “extra intrusion” and may lash out, particularly when these individuals seem unsure of themselves or less competent than others providing similar care.
Several things can help in situations such as the one described here. Health care professionals should make a conscious effort to encourage parents to continue to be the primary caregiver for their child. Parents should be consulted about the best way to make the child comfortable for procedures and treatments. They also should be given the opportunity to have a specific role in preparing the child for procedures and in supporting the child during and after these procedures. It helps a great deal when the hospital staff is honest with parents about what the child is going to experience and gives them some choices about how they can be involved. It is especially important to avoid unintentionally splitting the child and parent. Attempting to make friends with the child when the parent is not around is likely to make the parent more upset and may make the child feel guilty as well.
When conflicts do arise, it is important to recognize that both parties contribute. The physician needs to consider the reasons behind the parent's complaints and whether his or her own personal sensitivities or behaviors may be exacerbating the situation. Communication is critical. Usually the situation should be openly discussed—but not in front of the child—acknowledging that the health care team may have contributed to the conflict. Making a genuine effort to listen to the parent's concerns and taking action to address these concerns is a good first step. Sometimes it helps to refocus the attention on the child's needs.
Health care professionals should recognize that changes in nursing or resident staff are difficult for families. Both children and their families often feel a loss when staff members whom they like and trust leave and they need time to get used to new people who may have different ways of doing things. This is especially difficult in stressful times and in unfamiliar environments.
Finally, the attending physician and other members of the health care team should have recognized the intern's distress and provided support and constructive suggestions before the situation became so severe that the intern felt there was no recourse but to request to be removed from the child's health care team.
Please send scenarios to Caroline Wellbery, MD, at firstname.lastname@example.org. Materials are edited to retain confidentiality.
Copyright © 1998 by the American Academy of Family Physicians.
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