The pediatrician is required to act in the best interests of the child, even when religious tenets may interfere with the health and well-being of the child. When an infant or child whose parents have a religious prohibition against a blood transfusion needs a transfusion to save his or her life, the courts always have intervened to allow a transfusion. In contrast, parents with strong religious beliefs under some state laws may refuse immunizations for their children. However, state governments can mandate immunizations for all children during disease outbreaks or epidemics. By requiring immunization of all, including individuals who object on religious grounds, the state government is using the principle of distributive justice,which states that all members of society must share in the burdens and the benefits to have a just society.
Children as Human Subjects in Research
The goal of research is to develop new and generalized knowledge. Parents may give informed permission for children to participate in research under certain conditions. Children cannot give consent but may assent or dissent to research protocols. Special federal regulations have been developed to protect child and adolescent participants in human investigation.
These regulations provide additional safeguards beyond the safeguards provided for adult participants in research, while still providing the opportunity for children to benefit from the scientific advances of research.
Many parents with seriously ill children hope that the research protocol will have a direct benefit for their particular child. The greatest challenge for researchers is to be clear with parents that research is not treatment. This fact should be addressed as sensitively and compassionately as possible.
The death of a child is one of life’s most difficult experiences. The palliative care approach to a child’s medical care should be instituted when medical diagnosis, intervention, and treatment cannot reasonably be expected to affect the imminence of death. In these circumstances, the goals of care focus on improving the quality of life, maintaining dignity, and ameliorating the suffering of the seriously ill child. Central to this approach is the willingness of clinicians to look beyond the traditional medical goals of curing disease and preserving life. They need to look toward enhancing the life of the child and working with family members and close friends when the child’s needs are no longer met by curative goals. High-quality palliative care is an expected standard at the end of life.
Palliative care in pediatrics is not simply end-of-life care.There are conditions where death is not predictably imminent,and a child’s needs are best met by the palliative care approach.Children needing palliative care have been described as havingconditions that fall into four basic groups, based on the goal oftreatment. These include conditions of the following scenarios:
A cure is possible, but failure is not uncommon (e.g., cancer with a poor prognosis).
Long-term treatment is provided with a goal of maintaining quality of life (e.g., cystic fibrosis).
Treatment that is exclusively palliative after the diagnosis of a progressive condition is made (e.g., trisomy 13 syndrome).
Treatments are available for severe, nonprogressive disability in patients who are vulnerable to health complications (e.g., severe spastic quadriparesis with difficulty in controlling symptoms).
These conditions present different timelines and different models of medical intervention. Yet they all share the need to attend to concrete elements, which affect the quality of a child’s death, mediated by medical, psychosocial, cultural, and spiritual concerns.
The sudden death of a child also requires elements of the palliative care approach, although conditions do not allow for the full spectrum of involvement. Many of these deaths involve emergency medicine caregivers and first responders in the field, and they may involve dramatic situations where no relationship may exist between caregivers and the bereaved family. Families who have not had time to prepare for the tragedy of an unexpected death require considerable support. Palliative care can make important contributions to the endof-life and bereavement issues that families face in these circumstances. This may become complicated in circumstances where the cause of the death must be fully explored. The need to investigate the possibility of child abuse or neglect subjects the family to intense scrutiny and may create guilt and anger directed at the medical team.