Changing ethics of pediatric health care: The last 50 years
Then, in 1971, a documentary “Who Should Survive?” explored the ethical decision making for babies with birth defects.7 The harms of institutionalization became recognized. The benefits of early intervention and special education have been established. Support for an Individual Education Plan has progressed through successive laws beginning in 1975 until the Individuals with Disabilities Education Improvement Act of 2004.
This is just another example of how ethics develops from a philosophical ideal to a change in social status, followed by consciousness raising, civil rights legislation, enabling legislation, funding, and program development and implementation.
It takes a village of philosophers, activists, lawyers, legislators, physicians, and other experts to implement ethics. There are also countervailing forces. The mainstreaming of children with disabilities is one factor in the movement of children into private schools and the pressure for a voucher system, as advocated by the new Secretary of Education, Betty DeVos.
There also has been a change in the status of children as future providers. Historically, children were relied upon to provide for the parents in their old age. With decreases in infant mortality, the availability of birth control, and legalized abortions, smaller families became the social norm. Worldwide, there has been a marked drop in fertility rates in developed nations. Governmental programs such as Social Security, particularly with the introduction of Medicare in 1965, meant that the elderly were less dependent on their descendants. China found that acceptance of the One Child policy was heavily dependent on convincing parents that the State would provide for them in their old age. The modern political state has assumed duties previously performed by the family.
More recent changes
Pediatric health care is strongly impacted by public health measures. Infant mortality has been reduced by improved nutrition and public health, not medication and surgery. Mass immunization programs were viewed as an appropriate function of civic government.
The introduction of polio vaccine in the 1950s made a large impact. Families lined up at any opportunity to get the vaccine. Polio went from hundreds of thousands of cases of paralysis each summer down to zero cases of wild polio transmitted within the western hemisphere. Measles cases went from 450,000 cases a year in the early 1960s down to zero, until a fraudulent link to autism led to a significant number of parents not immunizing their children. Vaccine refusal, previously a rare ethical issue related to religious liberty, became corrupted by efforts at boutique medicine and alternative facts. In modern America, the ethics of individualism and personal rights have eclipsed civic responsibility. With herd immunity compromised, a blip up to 100 cases of measles per year was histrionically described as a huge epidemic. That spin shows ignorance of the historical record, but the risk was enough for the liberal state of California in 2015 to ban philosophical exemptions to vaccination with one of the strictest state laws in the nation.
Ethics is about values. So, as I look at the changes over 50 years, the areas that have failed to make progress are illuminating. Mental health care for children has not made the same progress achieved with vaccines and cancer therapy. My most recent clinical ethics case involved a teenager who had made a suicidal gesture by taking a handful of pills. The nurses were caught between caring for their patient and meeting the demands of an upset, authoritarian parent in a world where customer satisfaction is critical. I spent much of the night exploring hospital policy and state law. I solicited and listened to widely disparate interpretations of law, medical ethics, and hospital policy from the floor nurse, the nursing supervisor, the nursing staff on the adult inpatient psychiatric unit, three ED docs, a social worker, a government agency, and a judge’s representative. The physician of 1967 was captain of the ship and would not recognize the chaotic teamwork of modern medicine. The exercise showed me how little progress we have made in mental health care for adolescents during my 25 years of practice.
It also reminded me that I have the luxury to debate ethical minutia like vaccine hesitancy and adolescent consent in a world with Syrian refugee camps and starvation in South Sudan. Mahatma Gandhi said, “There are people in the world so hungry that God cannot appear to them except in the form of bread.” That, unfortunately, has not changed in 50 years.
