Changing ethics of pediatric health care: The last 50 years

The ethics of pediatric health care have changed radically in the past 50 years. “History,” they say, “is written by the victors.” So, if you are not careful, you will only get part of the story. Clinical ethicists learn to seek out, involve, and empower the voices of all stakeholders. To fully appreciate how much things have changed, you must learn more than one side of the story. Indeed, piecing together the history of medical ethics reminds me of the Indian story of five blind men describing an elephant, in which each can only describe a part of an ultimately much bigger animal.

If you ask philosophers about the history of medical ethics, they will point to events 50 years ago as the beginning of the modern era. In the 1960s, physicians tended to be paternalistic authoritarians. Some considered it best not to even tell a patient that he had cancer. There was minimal patient education provided. Medications were prescribed as orders for the patient to follow. Medical research had harmed volunteers, and new protections were needed.

The 1970s brought change, with the courts laying out new rules for informed consent in cases like Canterbury v Spence (1972). For over 5 years, a national commission studied the research scandals, as in the Tuskegee Syphilis Study. In 1978, it produced the landmark document known as the Belmont Report.¹ That report formed the basis for the modern institutional review board (IRB). Another landmark publication was the first edition of Principles of Biomedical Ethics by Tom L. Beauchamp and James F. Childress in 1979, which provided the four principles of the Georgetown Mantra of Bioethics: autonomy, beneficence, nonmaleficence, and justice. With time, autonomy became the first among equals of those four principles.

In 1995, the American Academy of Pediatrics Section on Bioethics emphasized the importance of obtaining the child’s assent in addition to the parent’s consent.² Most states have passed laws permitting minors to give consent for treatment for pregnancy, sexually transmitted diseases, drug addiction, and mental health care.
 

Technology alters ethics

At the same time, technology has been changing medicine. New life sustaining technologies in the 1960s – such as dialysis and ventilators – created new issues of extreme financial cost, allocation of scarce resources, and even the existential question of when life ends. In 1968, an ad hoc committee at Harvard created criteria for what is colloquially called “brain death.”³ Many landmark legal cases further developed the ethics of end-of-life care.

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Meanwhile, pediatric oncologists began a new way of caring for children with cancer. They collaborated on a national level. Each newly diagnosed child was entered into a registry and treated according to a national protocol that was updated every few years. This blurred the distinction between experimental and clinical care. But, it yielded results. Within a couple decades, acute leukemia went from few survivors at 1 year after diagnosis to 95% becoming long term survivors of more than 5 years. With that success and new research always promising hope, the pediatric oncologist’s ethical dilemma became when to palliate rather than seek a cure.

The boundaries were even less clear at the beginning of life. Technological advances in ventilators, improvements in nursing care by neonatal intensive care unit nurses, and the whole new subspecialty of neonatology progressively lowered the gestational age for survival. The distinction between clinical care and experimental care was again blurry as neonatologists sought to overcome previously unknown complications, like retinopathy of prematurity resulting from too much oxygen and bronchopulmonary dysplasia from the ventilator. Many babies survived with profound physical and neurological compromise. The ethical dilemmas were continuously present.

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Some pediatricians will claim that medical ethics is driven primarily by advances in technology, not law. Perhaps the most telling point for this has been that, when clinical ethicists specializing in pediatric ethics get together at national meetings, about half are neonatologists and a quarter are pediatric ICU physicians. These physicians have acquired expertise in ethics as a survival mechanism for the daily challenges presented by new technology.
 

Change in the status of children

There is more to the story than philosophy, law, and technology. Pediatric ethics has been profoundly impacted by a change in the status of the children. One change from 50 years ago has been the social response to child abuse.⁴ Norms changed. Before, fathers pretty much could raise their children any way they saw fit, including corporal punishment. Neighbors didn’t intervene. The proverb was “spare the rod and spoil the child,” but abuse was not motivated by discipline. It was cruel, authoritarian, and demeaning. The landmark article describing the Battered Child Syndrome was published in 1962.⁵ By 1967, the local Society for the Prevention of Cruelty to Children had become nearly obsolete, but understaffed local government agencies were just beginning to respond. In 1974, federal action produced the Child Abuse Prevention and Treatment Act.⁶ Medical personnel became mandatory reporters, developed expertise, and, in 2009, child abuse became a boarded subspecialty in pediatrics.