cure as the end stage of an illness approaches, “upstream palliative care” involves the periodic discussion of prognosis and care options and, as appropriate, the reconsideration of the goals of care during the early stages of complex chronic illnesses, for example, during “routine” visits and check ups.

Figure 3.2b illustrates the concept of integrated care in which multiple objectives are pursued concurrently after the diagnosis of life-threatening condition. The emphasis and specific elements of care may vary depending on the situation. Thus, some aspects of advance care planning (e.g., discussion of preferences for cardiopulmonary resuscitation, weighing of hospital versus home care as death approaches) are less urgent when a child’s condition is possibly curable, treatments are not themselves life-threatening, and early crises such as cardiac arrest are uncommon. Likewise, if early symptoms are minimal, the emphasis may be on reassuring parents that the child’s care team will do everything possible to anticipate and prevent problems and to make their child comfortable if treatments or worsening of the condition brings pain or other symptoms.

Although this report emphasizes the model of integrated care following diagnosis, situations exist in which care may indeed switch abruptly from a near total emphasis on cure or life prolongation to a total commitment to palliation, preparation for death, and support for grieving family members. For example, with some seriously injured children, physicians may initially assume—pending further evaluation—that survival is possible and work intensively and virtually exclusively toward that goal. Test results or poor response to treatment may then demonstrate irreversible damage that will lead inevitably and fairly soon to death. At that point, the emphasis of care may shift quickly to relieving any distress that the patient might be experiencing and preparing the patient (if conscious) and family members for death. When this happens, the message is never that “there is nothing we can do” but that “we must refocus on efforts” on comfort and peace and making the most of the family’s remaining time together.

Similarly, for some children, the emphasis of care may always be palliative. For example, in the vignette earlier in this chapter, Sean Riley’s medical condition was incompatible with extended life, but the family could have been provided active emotional support before, during, and after the birth. Physicians and nurses could have planned and prepared to manage the delivery in accord with the family’s goal of having time with the baby after birth. Care would have been intensively palliative from the time of prenatal diagnosis, supporting the parents as parents before and after the baby’s death and reducing their sense of powerlessness.

In yet other circumstances, the emphasis or balance of care may fluctuate over time, for example, when a child has with a progressive, fatal condition such as muscular dystrophy or certain heart conditions. In the



The National Academies | 500 Fifth St. N.W. | Washington, D.C. 20001
Copyright © National Academy of Sciences. All rights reserved.
Terms of Use and Privacy Statement