Talking to Parents About Their Chronically Ill Child

Talking to Parents About Their Chronically Ill Child

Rae Brown, M.D.

Imagine, if you will, the plight of a mom or dad that must deal every day with a chronically ill child. The child may be a sick former premature infant, a child with congenital heart disease, myelomeningocoele, perhaps leukemia.  For some with the severest disease, such as complex congenital heart disease, each day presents as a literal struggle for survival. Did they give the correct medications? Did the child gain weight? Did they gain too much weight? For the child with leukemia every febrile episode may be life threatening. For the adolescent with severe diabetes the parent must determine whether their child really understands the implications of not taking the insulin, of dietary abuse, of not reporting fever or other indices of infection.

 These parents had a picture of what their baby or child would be like; surely a vision of a healthy child, a child that they do not have. Moms in particular visualize a baby during their pregnancy. That baby is healthy and happy with a round face and chubby cheeks. But each day after the baby is born parents are met with the stark realization that their baby will not be what they envisioned, that theirs is not the happy round baby that will outlive them but perhaps a sickly little creature that succumbs to disease or anomaly, oft in infancy. These parents do not love the child any less and, in fact, their interactions with the child and the emotional requirements of caring for their baby or child each day may cement a deeper feeling than other parents may have. Some parents are paralyzed by their attachments and fears.

Children that have severe neurological disease or neuropsychological conditions often exact a terrible toll on families. The child with the problem often becomes the focus of attention of one or both of the parents.  Siblings feel, with some justification that they are being denied the love and attention that is being given each day to their sibling.  Fathers feel that they are not getting enough attention, mothers feel that they are not getting their needs met.  Unless there is an extremely strong support system all of these psychosocial problems can and will tear a family apart. Often this leads to marital difficulties, alienation of other children, and, perhaps, divorce. For parents who have a child with autism, the rate of divorce approaches 70%.  Thus, in the best of circumstances, parents and children may be on edge.

When one is called upon to talk about the medical care of a chronically ill child with a parent it stands to reason that this discussion will be substantially different than talking to other parents whose kids are characterized as “normal”. Parents will often have intense feelings about the care that has been provided for their child in the past, or the healthcare providers that have come before. These feelings may be overwhelmingly positive to the extent that no one could ever provide the care that Dr X did. No amount of explanation or quoting ones’ personal experience or certifications will meet the test of the care that has been provided before. The feelings may be entirely negative with suspicions about what has been done before and the motives of the physicians and nurses that are involved now. They may have experienced a bad outcome; if so that may increase their animus toward everyone involved in their child’s care, no matter who that person is, their level of experience, or their desire to make things OK. Occasionally there is unconcealed anger. Sometimes there can be personal threats.

I was faced with a situation such as this at one point. Unless I am dealing with an emergency I make it a point to sit down with the parents to discuss what will happen and to give them an opportunity to ask questions. In this case I did that and at the end of the discourse I told the single parent, the child’s father, that I was going to take very good care of their child. The father stared at me for a few seconds and said “ You’d better, If you don’t I will kill you.” Simply stated, parents get stressed.

Fear, anger, suspicion, sadness; what is one to do with these emotional responses? Is it possible to provide the care that is required against a backdrop of hostility? How can an astute clinician do the right thing?

First, all parents of children with chronic disease do not present with anything like hostility. Many are tired because of the requirements of full time parenting. A large majority of parents are knowledgeable about their child’s medical problems, and are aware of what has worked well in the past. These parents should be treated like the colleagues that they are in the care of their child, with the greatest respect for their perseverance and their intimate grasp of the medical issues at hand.

Second, some parents that are new to caring for a child with chronic disease will appreciate the extra time that a clinician takes to explain in detail the problems that their child has, the solutions that are available, and any bumps in the road that can and will exist. Undue optimism is not warranted but if a child is just being diagnosed with leukemia some words of reassurance can help the parent get through the day.

That leaves a small number of parents that for many reasons cannot manage the pressures attendant to the events that have devastated their lives. Parents that seem irritable, angry, or depressed in the face of caring for a child that is chronically ill deserve our support, understanding, and most important, our time. Many need to vent, some require the opportunity to provide critical information, and some simply require assurance that they have been heard.  The most important thing that can be done for the child and the parents that you will be taking care of is to stop, pull up a seat, and listen. There is nothing to be gained by, nor will there be any good outcome from trying to tell the parents how much you know, how smart you are, how many other children you have taken care of or how wrong they are.  Reassurance about the level of expertise usually needs to come after a period of calm listening. Explanations about the exact course of events in language understandable to the lay person can demonstrate to the parent that the clinicians that will be caring for their child are thoughtful, informed about the disease process as well as the surgical procedure, and are prepared to manage the eventualities that occasionally occur during a surgical procedure despite providing care that is state of the art.

Anesthesiologists sometimes fail to communicate with patients and their families after they leave the operating room. I believe strongly that this should avoided if possible and sometimes it is not possible. For parents of children that have chronic disease there is much to be gained by making an effort to speak to them in the PACU and/or on the floor in the immediate postoperative period. This helps in a number of ways. First, it gives the parents an opportunity to establish a relationship with a health care provider that may serve to reduce their level of stress the next time the child has a procedure. Second, Giving them information about what worked and what did not work in the management of their child will often reduce anxieties before future procedures. Third, it shows the parents that their child is important to you. They will greatly appreciate that.