Discontinuing Artificial Fluids and Nutrition: Discussions with Children's Families

I recently received an inquiry about what literature might help clinicians talk with parents about decisions to stop food and water provided to children through feeding tubes. To my knowledge, no "how to" guides exist. The excellent clinical and ethical analysis from Nelson and colleagues in 1995 does not offer a detailed description of the conversations one must have.¹ Clinicians desperately need research focused on how to help families understand the facts relevant to their decision and work through the powerful feelings these situations evoke no matter what they decide.

The possibility of discontinuing nutritional life support has come up several times in the few months since our pediatric palliative care program began at the Children's Memorial Hospital in Chicago. Grimaces have overtaken the faces of family members in the opening moments of each such conversation I've had.

Recently, one family requested that their child be admitted to the hospital for the purpose of ensuring comfort after stopping use of the patient's implanted feeding tube—the only measure maintaining organ function as a degenerative disease progressed. As the "on call" palliative care physician at the time of the admission, I accompanied the intern and third-year resident to take a history and perform a physical. We reviewed the child's condition and the goals for the admission. I recited—for one more time that the family might have preferred to skip—what we think happens after fluids and nutrition are stopped. In children who have little response to their environment, hunger and thirst probably do not occur. For those with more brain function, hunger is most likely transient, lasting twenty-four hours or so, disappearing as chemical changes induced by the lack of fuel take place. Thirst fades, too, although it probably lasts somewhat longer, about forty-eight to seventy-two hours. Again, biochemical changes prompted by the lack of water play a role in the brain's reaction. These observations, however, come from reports that may not be relevant to pediatrics. They come from people deprived of food and water in "desert isle" scenarios, kept from eating and drinking by captors, or on hunger strike. Also, many adult patients, especially those with disseminated cancer, voluntarily speed their death by stopping their intake and do not report unpleasant consequences. We cannot readily apply these experiences to those of dying children, especially children with diminished cognitive capacity.

The parents of our patient indicated they understood our explanations and reiterated their agreement with our plan to maximize their child's comfort by providing morphine and sedation to blunt, if not eliminate, discomfort. We worked over the next several days to help the family cope with the child's decline. We also met with nurses and physicians in training to help them come to terms with the developments.

Watching a child die partly as a result of stopping fluids and nutrition stirs up very strong feelings. Young children depend on us to feed them. We obsess about babies' weight gain, wanting them round and healthy. Not feeding runs sharply against the grain. Moreover, dying this way may take some time—between one and three weeks, depending on the child's age and the state of the child's cardiovascular system. The waiting takes a toll. After our patient died, we felt exhausted, though the parents' relief and thanks helped reassure us that we had done the right thing.

I cannot imagine a recipe for perfect conversations with parents about stopping artificial fluids and nutrition. Only a few rough suggestions seem possible. I believe candor, acknowledgment of uncertainty about the child's experience, and a solemn promise to respond quickly and unhesitatingly to signs of distress or discomfort make a difference. I also believe clinicians need to spend all available time at the bedside during the child's dying because we clinicians need to stay connected to the reality of death. Yet even here, the parents may have different needs—some will want as much time as possible alone with their child. And though research will help us understand what families need, I doubt we can...