By Norman Fried —

On November 11, a 13-year-old girl from the United Kingdom successfully battled a hospital decision that would force her into having a potentially life-saving heart transplant. Hanna Jones, from Marden near Hereford,  England, defied the hospital’s decision to force the surgery, stating, “I don’t want any more treatment.” Administrators at Hereford Hospital in London eventually abandoned legal action to force the girl’s admission, and instead agreed to let her return home to die.

The present law in the UK states that a child under the age of 16 may indeed be judged able to give his consent for an operation, but there is nothing written in the law about a child’s ability to refuse treatment. The decision to agree to Hanna’s wishes thus begs the question: What is the appropriate age for a person to give consent to die?

Many readers would argue that Hanna is too young to make this delicate decision on her own. Others might argue, since she reportedly “demonstrated an awareness of the serious nature of her illness,” that her wish to die should be honored. In order to address this polemic fairly, we must first appreciate the impact that chronic illness has on a child’s psychological and cognitive functioning.

Children’s responses to medical trauma are complex and different from those of adults. Chronic illnesses in childhood can compromise all areas of development, including feelings of safety and security, body integrity and the ability to trust oneself and others.

Disturbances of memory, constricted affect, and avoidance of intimacy are the maladaptive answer to a child’s concerns about safety. Moreover, shame from being continuously “poked and prodded” by physicians and surgeons, as well as a pervasive fear of recurring and painful medical procedures, can reinforce a child’s belief that the world is divided into two types of people: victims and perpetrators. Even the adult caretakers, grief-stricken and traumatized themselves, can become wedded to the belief that the world is either “all good or all bad.”

One of the most difficult tasks of living, particularly for chronically ill children and those who have witnessed the suffering of a child, is to identify the critical events in a child’s short life that, when put together, tell the honest story of his fears, his hopes and his dreams. Understanding the way a sick child has lived, and about the way he wishes to die, gives him the chance to explore the full range of his fears and feelings as death draws near. But it does not give him the right to terminate his treatment; nor does it allow his caretakers to make the final choice alone.

The decision about whether a life “measures up anymore” must be determined carefully, and it should include members of the medical and psychosocial team, as well as the patient and his family. With the help of trained professionals, the process of listening to a sick child’s fears and frustrations can help to decipher the subtle, yet astounding, differences that exist between depression, cognitive disorganization, transient feelings of hopelessness and a genuine wish to hasten one’s own death.

Young Hanna Jones may have decided that rejecting the hospital’s only long-term solution for survival was the right choice for her. But when we consider the developmental, cognitive, and emotional disruptions that take place in the mind and the heart of a child in crisis, the decision to die seems eminently flawed when left solely in such young hands.

Dr. Fried is the author of The Angel Letters: Lessons That Dying Can Teach Us About Living.  For his video discussions of assorted related topics, click here.