Barriers to well-being

The extent of society’s responsibility for child health care needs clarity

The recent controversy around the health care of Charlie Gard, a terminally-ill 11-month-old baby in the United Kingdom who was finally taken off life support and passed away on July 28, got huge media coverage, polarised public debate and unleashed tense legal battles around complex ethical issues related to the health care of a baby. The infant was born with a serious mitochondrial disorder that led to the wasting of his muscles and brain. There is no definitive treatment and the baby was on life support since last October.

Protecting a child’s interests

His parents wanted to take Charlie to the United States where an experimental therapy of nucleosides would have been attempted, with an estimated 10% chance of benefit. Doctors at Great Ormond Street Hospital in London said that his clinical condition ruled out any benefit and felt it unethical to subject the baby to the turmoil of a “futile” journey. As serial scans showed severe brain damage, they held out no hope of survival and felt that the boy should be allowed to die with dignity. The parents wanted to try out the experimental therapy and repeatedly took the hospital to court. They failed to convince British courts and the European Court of Human Rights which deferred to the hospital’s assessment. The U.S. Congress intervened to grant extraordinary citizenship to Charlie so that he could travel for treatment but the British court did not permit his release from the hospital. Last week, the parents finally gave up after the American expert said that the latest scan ruled out any possible benefit at this stage.

The ethical and legal tangles involve questions of what is in the best interest of the baby. Here, the court decided on behalf of the baby after hearing all the parties in an emotionally drenched contest. As expected, public opinion mostly supported the parents while the legal verdict upheld the medical recommendation not to prolong or aggravate the baby’s suffering. The key message that emerged is that society has the final responsibility to protect the child’s interests, however determined.

The monetary angle

Still, there is a strange deviation from this rule when it comes to paying for the treatment of a child with serious conditions such as heart disease or treatable leukaemia. In countries with high levels of treatment coverage under a system of universal health coverage (UHC), this cost is covered in part or full. In many countries it is not, especially when the cost of the procedure is high. The child gets treated only if the parents can afford it or risk bankruptcy to save their child. Is this fair?

In countries where social services are very sensitive to child rights, the child is taken away from the parents if the child is abused or even neglected. The responsibility of a civilised society to protect the child is thereby affirmed. How is it then that the neglect of a child’s medical problem is not seen as a failure not just on the part of parental care but of the obligation of society too to protect the vulnerable child?

Economists will say that UHC cannot cover all treatments for everybody because resources are finite. They are right. However, how does this stance reconcile with society’s duty to protect the child? Even if complex diseases with limited benefit from treatment are excluded, should not UHC cover conditions that seriously affect the health and the well-being of the child but have treatments available that add many years of functional life? What about funding for improving the functionality of children with disabilities?

While allocating resources in the health sector, economists also prioritise public good over private good. Immunisation programmes, for example, protect persons from infectious diseases which can spread across a population and are, therefore, regarded as a public good. Personal health care is regarded as a private good. In case of children, where society assumes a caring custodial responsibility, how does this distinction hold?

In the Indian context, costly treatments that can provide high returns of longevity and functionality for children are obtained through sporadic philanthropy or limited coverage social insurance schemes funded by the government. These do not remove the barriers of access and affordability. It is time health professionals, policy makers, economists, ethicists, legal experts, parent representatives and community leaders are brought together to decide by consensus on the dimensions and delivery pathways of societal responsibility for child health care.

Prof. K. Srinath Reddy is President, Public Health Foundation of India (PHFI). The views expressed are personal

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