Eating and drinking are basic pleasures in life that have important physical and social implications (Ersek, 2003). Ingestion of food and fluids provides essential nutrients for growth and development and maintenance of life-sustaining cellular activity. Eating and drinking also provide opportunities to nurture and be nurtured. Although physical and social implications are important throughout life, the social aspects of eating are important during infancy. The nurture aspect of eating facilitates the establishment of trust in the infant's caregiver or parent. Thus, decisions related to nutrition and hydration during palliative care are challenging and emotionally complex (Ersek, 2003; Solomon et al., 2005). Parents and nurses need to have a clear understanding of what to consider when faced with these challenges.
Nurses can help parents establish nutritional goals of care with which they can be comfortable and that address both the physical and social aspects of nutrition. An important goal to be discussed is how infant nutrition will be provided. Clarification of the difference between nutrition consumed orally and medically supplied nutrition and hydration, also called artificial nutrition and hydration, is an important first step. Parents can be assured that infants will be offered food and water as long as they are able to ingest them safely. Parents can offer an infant a pacifier, because nonnutritive sucking can meet some of an infant's oral needs. When at home, parents should be encouraged to include infants and children in family meals as much as possible. Parents, however, may be asked to consider other means of providing nutrition and may ask nurses for advice. Consequently, it is important for nurses to understand what is meant by Medically Supplied Nutrition (MSN). MSN involves administering nutrition by any means other orally (Ersek, 2003). This category includes intravenous fluids, such as total parenteral nutrition, and enteral tube feedings. The former, however, are not used as frequently as the latter because of cost and the occurrence of more frequent complications, such as infection (Ersek, 2003).
Parents should be informed that MSN "may prolong the dying process, and near the end of life, may cause congestion, excessive secretions, and considerable discomfort" (Solomon et al., 2005, p. 873). Moreover, there may be occasions when such an intervention is neither ethically nor legally appropriate. The nurse can be comfortable raising this question with the healthcare team because several professional associations, including the American Nurses Association, support this position (Solomon et al., 2005). In fact, "when their benefits [MSN] outweigh their burdens and when their use is inconsistent with agreed-on goals of care, medically supplied food and fluids can be foregone or withdrawn" (Solomon et al., 2005, p. 881). Effects of dehydration can be disconcerting for parents and healthcare professionals, but nurses can use numerous strategies to minimize these effects, including implementing conscientious and meticulous infant mouth care, providing appropriate bedding, addressing temperature changes, and encouraging infant holding by parents and caregivers.
Caring for an infant or child who is receiving palliative care requires sensitivity to parental needs and implementation of a collaborative plan of care that reflects agreed-upon goals. Decisions about infant nutrition should be based on a comprehensive understanding of the choices available. Compassionate care is critical when caring for infants and children receiving palliative care. Who better to provide that care than nurses who interact with parents on a daily basis and have the necessary knowledge?
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