Hannah Jones, 13, is not afraid of dying - she is afraid of spending her remaining days in a hospital bed. In a case that raises a host of medical and ethical issues, the British teenager from a small town northwest of London has won a battle to refuse a heart transplant operation. That decision by British medical authorities has ignited a debate over whether children should have the right to refuse potentially lifesaving medical treatments or if health authorities have an obligation to intervene.

That heartbreaking story illustrates the difficult issues that surround the law’s treatment of children as individuals with a right to determine their future. When Hannah and her parents decided against the procedure the medical authorities threatened to take them to court to force her to have it.

Doctors are required to obtain informed consent before treating a patient because individuals are thought to have the right to control what is done to their bodies. This includes the right to control the course of medical treatment and even to refuse it altogether. As long as a person is competent, they have a constitutionally-protected liberty interest in refusing unwanted medical treatment, balanced against the state’s interests in protecting and preserving human life. Cruzan by Cruzan v. Director, Missouri Dept. of Health, 497 U.S. 261 (1990). A competent person has a right to refuse treatment even if the refusal ends in the individual’s death.

In general children are thought to lack the capacity to make life-altering decisions on their own. They may not fully understand the consequences or risks of their decision or the nature of their circumstances. The law defers to the judgment of parents or guardians in such situations.

While the Court has found that just like adults, a child also has a substantial liberty interest in not being confined unnecessarily for medical treatment, Parham v. J.R., 442 U.S. 584 (1979), the Court later noted that “In Parham… we certainly did not intimate that such a minor child, after commitment, would have a liberty interest in refusing treatment.” See Cruzan.

So where does that leave us?

In Hannah Jones’ case a social worker was sent to interview her about her refusal to have a heart transplant. After discussing it the social worker then backed Hannah’s decision, which was supported by her parents as well.

According to the Department of Health, when a child is considered competent and refuses treatment, their decision will be respected. When a consensus can’t be reached, the patient can be overruled by either parents or guardians, or in more unusual circumstances, by the courts.

The harder questions are of course when the child and the parents disagree, or the state finds circumstances that they feel justifies overruling both parent and child, such as what effect to give religious views regarding surgery or blood transfusions. The rate at which this issue comes before the courts is only likely to increase given that advances in medical technology may often prolong painful treatment periods that a child or parents may instead choose to avoid to improve the quality rather than the longevity of life.

Further Reading:

• Susan D. Hawkins, Protecting the rights and interests of competent minors in litigated medical treatment disputes. 64 Fordham L.R. 2075 (1996).
• Hillary Rodham, “Children Under the Law”, 43 Harv. Edu. Rev. 487 (1973).

Only 46% of kids visit the doctor and dentist at least once a year in Idaho, but 75% of Massachusetts children do. Infant mortality rates are 2.5 times higher in the District of Columbia than in Maine. And South Carolina kids are 5.7 times as likely to wind up in the hospital for asthma as those in Vermont.

These measures of children’s health are part of a report out today by The Commonwealth Fund, a private foundation that studies health issues and supports efforts to cover more people. The report found that top-performing states tend to have lower rates of uninsured children than those ranked at the bottom but also have higher health costs.

While other studies have considered how children fare, this is the first to compile an array of 13 measures relating to access to medical care, quality and cost for children in each state. Overall, Iowa ranked first and Oklahoma ranked last. Among the findings:

•Vaccinations. The percentage of children who received five recommended vaccinations from ages 19 months to 35 months ranges from 94% in Massachusetts to 67% in Nevada.

•Uninsured. The percentage of uninsured children ranges from 5% in Michigan to 20% in Texas.

•Costs. Utah has the lowest spending per person at $3,972. The District of Columbia has the highest at $8,295.

The report uses data from government agencies as well as private groups, such as the Kaiser Family Foundation, a non-partisan research group. It concludes that all states fall short in one area or another and could improve.

If all states performed as well as the top state in each category, the report says, an additional 4.6 million children nationwide would have health insurance, 11.8 million more would visit the doctor and dentist at least once a year, and nearly 800,000 more would be current on their vaccinations.

Karen Davis, president of The Commonwealth Fund, says the low rate of immunizations in some states could be remedied by upgrading systems to track them and notify parents and providers.

“If we had a modern information system, we would be reminding patients and primary care physicians that (the children) are overdue for their shots,” Davis says.

The report comes amid efforts by many states to bolster insurance programs aimed at families.

President Bush in December signed an extension of funding for the State Children’s Health Insurance Program after twice vetoing Congress’ attempts to expand it. The program, which sends federal money to the states through March 2009, has cut the percentage of uninsured low-income children by 25% from 1996 to 2006, according to the Congressional Budget Office.

Top-ranked Iowa attributes its success in part to providing a range of services and coordinating care among doctors, hospitals and clinics.

“We focus on coverage to be sure, but also access to social, emotional and mental health services, dental services and prenatal care,” says Christopher Atchison, associate dean of the College of Public Health at the University of Iowa.

Matthew Davis, an associate professor of pediatrics and public policy at the University of Michigan, disagrees with researchers’ decision to mark down states for having higher spending levels.

Yet overall, he says, the report is useful and shows that “states can learn from each other.”

Despite being 100% preventable, rabies results in an estimated 55,000 deaths globally each year – approximately one person every 10 minutes. Most of these deaths are reported from Africa and Asia with almost 50% of the victims being children under the age of 15. The most important global source of rabies in humans is from uncontrolled rabies in dogs. Children are often at greatest risk from rabies, as they are most likely to be bitten by dogs or other animals and are often bitten in high-risk areas (such as the head or face).

Prevention has become particularly important in light of recent interruption in rabies vaccine supply which may make the rapid treatment necessary after possible infection too difficult for many to receive. World Rabies Day volunteers are setting up vaccination clinics, raising awareness and holding fundraising events to support continued prevention efforts.

• Centers for Disease Control and Prevention, Make Rabies History
• World Rabies Day, September 28, 2008

Source: Patricia Gray, J. D., LL. M. Unborn v. Undocumented: A Collision of Policy and Politics (.pdf), Health Law Perspectives, January 2008.