Life vs. Living: Lessons from Sharon’s Last Years in a Coma

For more than eight years, Ariel Sharon lived in a vegetative state. The former Israeli prime minister, who died on Saturday at 85, suffered a stroke in 2006. His brain never recovered—but with the help of modern medicine, his body soldiered on. His kidneys no longer worked, and he received dialysis to keep them operating. In 2013, he even underwent surgery to treat an infection related to his kidney failure, raising questions about the line between what’s reasonable and what’s excessive when it comes to medical care for those in minimally conscious states.

Would the same measures have been used in the U.S., to keep alive a former president, congressman or mayor? Certainly not at taxpayers’ expense, but insurers do cover the limited costs of basic medical management for patients in vegetative states confined to nursing facilities. Most Americans say they themselves would not want to be kept alive in a vegetative state—heart beating, lungs pulling in oxygen and expelling carbon dioxide, but no ability to communicate or interact with their surroundings. U.S. laws even reflect this position, with every state but New Jersey recognizing a more dire condition known as brain death, in which doctors deem it impossible for the brain to recover, and therefore consider the patient deceased. Such was the case with Jahi McMath, the California teen who slipped into a coma after complications during a tonsillectomy, and whose doctors declared her brain dead. Despite the prognosis, her family, unable to accept the hospital’s plans to withdraw her from life support, fought to have her discharged and moved to another facility. With brain dead patients, hospitals do not need consent from the family to disconnect a patient from a ventilator and issue a death certificate.

Things are different in Israel. Traditionally, the concept of brain death didn’t exist, as death is considered the simultaneous shutting down of the body’s primary functions—from the pumping of blood to breathing and thinking. But with the introduction of technology to keep some body systems working—such as the heart and lungs—the need to redefine death became critical. And the idea of brain death—similar to a death caused by a heart that stopped beating or lungs that stopped breathing—seeped into the culture and legal system as Sharon hung on. In 2009, the Israeli government passed the Brain-Respiratory Death Law that addressed religious concerns about defining the line between life and death and the latest medical knowledge. It required that several brain scans and other techniques would have to verify an irreversible lack of brain activity in order to declare the patient brain dead. The law was an attempt to encourage organ donation from patients whose bodies were otherwise healthy, but whose brains had all be ceased to function.

Even with the new medical criteria, however, some Israelis found it hard to relinquish religious concepts of life and death, and continued to find any life, even in a vegetative state, worth preserving. In the two years following passage of the law, the number of brain death determinations dropped by nearly 30%, from 12.9 per million population to 16 per million.

That’s likely why scientists performed brain scans on Sharon last January, and reported that they detected brain activity in response to voices of his family members, but not to other noises. Did that indicate he was aware of his surroundings, that his brain was conscious in some way? His doctors maintained that the activity was not necessarily a sign of awareness, but to some, it is. Neurologists remain at a loss to explain exactly what such brain activity means. And that uncertainty only perpetuates the painful and passionate debate over how much medical treatment is justified for patients in vegetative states.

Technology only muddies the issue, blurring the line that in times past was slightly sharper, when death seemed more inevitable than it does in many cases today. Terry Schiavo, the American woman who collapsed from heart failure and slipped into a decade-long coma in 1990, was a poignant case study in the difficult decisions that modern technology has wrought on families. While her husband petitioned to take her off the life support equipment that was keeping her body functioning, other family members objected, taking the occasional movements Schiavo made and the fact that she opened her eyes as signs that she was still alive. They saw removing the life support as akin to killing her. “Technology,” says Cynda Rushton, professor of clinical ethics at Johns Hopkins University, “has removed the mystery of death and life. It has created the illusion that death is optional.”

That increasingly pits doctors and hospitals against families, who often question the medical community’s morality—and very humanity—when medically determined prognoses clash with belief, faith, and even a conviction that miracles can occur. “It’s hard for families to believe that recovery isn’t going to happen,” says David Magnus, director of the center for biomedical ethics at Stanford University. “What they are hoping for is for the patient to get better, to talk, walk and go back to living his life, where we know that in most cases of vegetative states, there will never be recovery of language, they will never move and will likely need to live in a facility for the rest of their lives, being cared for and without any significant level of interaction.”

What’s understandably difficult for these families to accept is that living is not necessarily the same as life. Living involves experiencing events and relationships that require you to interact with people and the environment, influencing and being influenced by them. A body whose heart continues to beat, and whose lungs continue to breathe with the help of a ventilator, may have life, but is not living. “The default has become to use technology,” says Rushton. “We need to step back, and really ask ourselves under what circumstances we should be using technology, and use it in a way that preserves the opportunity for recovery when it’s there, but also doesn’t create the illusion of recovery when it’s not present.” For that happen, the gap between how health care professionals assess outcomes in cases of vegetative states and how the public perceives those conditions needs to close. And not just with technology, but with old-fashioned dialogue, so the realities of what technology makes possible—and what it doesn’t—are more aligned.