Hospital care for children living with life-threatening illness

Recent decades have produced a host of medical and technological innovations for children with life-threatening illness (LTI). These advances, while potentially life-prolonging, only sometimes offer the possibility of cure. As a result, many conditions once acute and fatal have been transformed into chronic LTI with which children may live for years.

While some treatment advances have resulted in unquestionable benefits for children, they often have collateral effects on the child and family. One significant effect, increased hospital-based care, is the focus of this issue. Frequent or prolonged hospitalizations may afford children opportunities to benefit from tremendous treatments and technologies. They often simultaneously result in child distress and family disruption. And while hospitals are equipped to provide highly technical treatments and afford meticulous physical care, they are not necessarily geared to comprehensively meet the emotional, social, and spiritual needs of children and families.

Furthermore, the landscape of hospital care that families must navigate today is progressively more fragmented and complex. Transitions to and from the acute care hospital setting for children with complex conditions are increasingly common. Adolescents/young adults with LTI, living longer, also face transitions to adult care settings. As they make these transitions, patients and families need models of care emphasizing clear communication, attention to complexities of care, and a focus on their values and goals.

The challenge: ensuring more care is better care

The rising tide of treatment options for families to consider has also outpaced the development of strategies to assist them as they consider the full range of benefits and burdens of treatments before their adoption. Treatments are often presented by subspecialists focused on a single organ system or pathophysiologic process, in a cure-oriented and intervention-oriented setting. For clinicians with a hospital-based vantage point, the lived experience of the “whole person” beyond the walls of acute care hospital is often obscured.

Hospital clinicians, as experts in the care of acutely ill children, play a key role in the care of children with LTI, including communicating with families about prognosis and exploring treatment options and implications for the child and family. However, hospital clinicians often function in a fragmented and uncoordinated health care system with frequently rotating staff and mounting time and fiscal pressures. They are often challenged to find the time and availability to delve sufficiently into the beliefs, values, hopes, fears, and lived experience of the hospitalized child and family to provide optimal care centered around the overall well-being of the child and family.