John Freeman wants Americans to think differently about death. It is not a discussion that most people will like because what the Johns Hopkins clinical bioethicist and professor emeritus of neurology and pediatrics wants is for Americans to think about death not as a failure but as an answer. “I want to foster a discussion about end-of-life care,” says Freeman, Med ’58. “I want people to think about what sort of life is worth living.”
In a recent opinion piece in the Journal of Medical Ethics, Freeman suggested that if Americans want a health care system that works, they need to more readily consider the ethical nature of death as a humane release for a terminally ill patient. Furthermore, they need to agree to limits on the amount of phenomenally expensive end-of-life care provided by the nation’s medical community. “I want people to think about what is good for society, and what may or may not be good for the individual,” he says. “It is something I’ve thought about for a long time. My thoughts antedate health care reform.”
Freeman argues that the ethical and emotional basis for both topics needs to be reexamined. It’s a conclusion he says he has reached because of his 52-year medical career. In 1969, Freeman returned to Johns Hopkins Hospital to head up the Division of Pediatric Neurology and the Pediatric Epilepsy Center (which was named for him in 2002). “I started as a child neurologist,” he says. “I worked in the birth defects clinic. Those experiences affected my decision-making process.” He worked with hundreds of children with severe epilepsies and malformations of the brain; in later years, Freeman and his team worked with Hopkins pediatric neurosurgeon Ben Carson to revive and improve the effective (and drastic) hemispherectomy procedure to reduce seizures in severely epileptic children.
He and his colleagues have saved many children’s lives—but they’ve also seen many children without a reasonable chance of survival die after months of expensive and
ultimately fruitless treatment. What happens when patients and families insist on preserving existence—but not necessarily “life”—beyond hope of recovery? The health care system must consider its own economic preservation and develop guidelines that limit such care, Freeman says: “‘Rationing’ is a dirty word, but we’re going to need it. I think the American way of life does not accept rationing—of anything. Americans don’t think health care should cost anything. But it does.” (He cites a study by the Dartmouth Institute for Health Policy and Clinical Practice that found a national average cost of more than $46,000 per year per patient in the last two years of life, with a high figure of $105,000 at New York University Medical Center.) U.S. society needs to consider the death of terminally ill patients as a sound ethical decision, he believes. “There must be few situations more undignified, more dehumanizing, or more humiliating than lying in bed, incontinent, tube fed, with or without a respirator, unable to speak or to relate to individuals or the environment,” he wrote in his journal article. In the abstract, he says, this is an easy decision. But imagine it’s your prematurely born infant with grave medical issues and no chance of survival, or your mother suffering from terminal cancer: “The good of society is much harder to weigh given a more personal crisis.”
Freeman’s experiences with patients, families, and the health care system have taught him that the medical answer for the individual may not be the best decision for the whole of health care. He understands the difficulty and emotional weight of his proposals, and he knows his ideas aren’t necessarily the perfect solution. “I don’t have the answers to end-of-life care,” Freeman says. “I just have the worries.”