Awakenings

On October 19, only months after being nearly dehydrated to death when his feeding tube was removed, Jesse Ramirez walked out of the Barrow Neurological Institute in Phoenix on his own two legs. Ramirez is lucky to be alive. Early last June, a mere one week after a serious auto accident left him unconscious, his wife Rebecca and doctors decided he would never recover and pulled his feeding tube. He went without food and water for five long days. But then his mother, Theresa, represented by lawyers from the Arizona-based Alliance Defense Fund, successfully took Rebecca to court demanding a change of guardianship on the grounds that Rebecca and Jesse’s allegedly rocky marriage disqualified her for the role.

The judge ordered that Jesse be temporarily rehydrated and nourished. Then Jesse regained consciousness. Now, instead of dying by dehydration, he will receive rehabilitation and get on with his life—all because his mother rejected the reigning cultural paradigm that a life with profound cognitive dysfunction is not worth living.

Ramirez is only the latest instance of an unconscious patient waking up after being consigned to death by dehydration. Take the disturbing case of 12-year-old Haleigh Poutre in Massachusetts. Haleigh barely survived terrible child abuse and then was nearly done in by the very people charged with protecting her. Only eight days after she was hospitalized in the wake of a beating, the Massachusetts Department of Public Social Services, acting on doctors’ solemn assurances that she was “virtually brain dead,” requested permission to remove her respirator and feeding tube. This request was approved by the Massachusetts Supreme Court.

But the doctors, social workers, and judges were wrong about Haleigh’s prospects. Just before her life support was withdrawn, she began to exhibit signs of awareness—she picked up a stuffed duck when requested—leading to a last-minute reprieve. Today, while Haleigh’s exact condition is not public information, reports in the media indicate she is awake and aware and able to eat some foods.

Beyond these and other unexpected spontaneous awakenings, there is the news that some patients diagnosed with persistent vegetative state may actually be cognizant. This discovery stunned the scientific community after doctors conducted a sophisticated brain scan upon a supposedly deeply unconscious British woman. Unexpectedly, the scan looked, well, normally reactive to stimuli. As reported by the Washington Post on September 8, 2006:

Without any hint that she might have a sense of what was happening, the researchers put the woman in a scanner that detects brain activity and told her that in a few minutes they would say the word “tennis,” signaling her to imagine she was serving, volleying and chasing down balls. When they did, the neurologists were shocked to see her brain “light up” exactly as an uninjured person’s would. It happened again and again. And the doctors got the same result when they repeatedly cued her to picture herself wandering, room to room, through her own home.

Even though the woman remains physically unable to react, she is clearly cognizant.

In other medical developments, a few unconscious patients have been awakened by medication—paradoxically, the sleeping agent that goes by the brand name Ambien. It doesn’t always work, but in a few cases, people who have been unresponsive for years have become responsive for the time during which the medication is active in their systems. In Japan, deep brain stimulation of patients in a persistent vegetative state via implanted electrodes has left three of eight patients awake, aware, and communicative, and a fourth markedly improved. Research into these potentially groundbreaking advances in the care of the profoundly brain injured continues.

Looming over all this good news like the proverbial elephant in the living room is the Terri Schiavo debacle. Almost every story reporting these hopeful events emphasizes that the Schiavo case was “different.” Maybe the writers are experiencing subliminal guilt over the part their biased and misleading reporting played in the wrong that was done to Schiavo. Indeed, in the wake of polls showing the public supported her 2005 dehydration, the media have portrayed the effort by Republicans in Congress to pass a law to save her life as an attempt to impose their religious views on a private family.

This myth has become a staple of the Democratic presidential campaign, despite the fact that the denigrated legislation was enacted in almost record time by one of the most bipartisan congressional margins seen during the Bush presidency. Indeed, passage in the Senate required unanimous consent, which means any senator—including presidential candidates Hillary Clinton, John Edwards, Joe Biden, and Chris Dodd (but not Barack Obama, who was not yet in the Senate)—could have stopped the bill in its tracks by simply saying no. None did so. Just as they voted for the Iraq war and later opposed it when it became unpopular, these Democrats pretend they were not essential players in the federal effort to save Schiavo’s life. (The bill also received support from about 40 percent of House Democrats.)

This political revisionism about the Terri Schiavo case coincides with a panicked retreat among many who once robustly opposed dehydrating the cognitively disabled. Emboldened are those who seek to supplant the equal sanctity of human life with a “quality of life” value system that accords to the profoundly cognitively impaired less value than the rest of us. This cultural tide now endangers thousands of people whose lives depend on how they are perceived by doctors, family members, and society.

In this climate, Jesse Ramirez-type stories can become more numerous, yet still barely penetrate the public consciousness. Increasingly, we hear about sustenance being withdrawn within days of a serious brain injury. And now that these helpless people are deemed dehydratable, there is a growing clamor in the professional journals to transform them into natural resources to be exploited like a corn crop—as sources of vital organs and subjects for experimentation.

To show how far this line of thinking has already gone, bioethicists writing in the Journal of Medical Ethics recently advocated transplanting pig organs into people diagnosed with PVS to determine the safety and efficacy of xenotransplantation (the transplantation of animal organs into human patients).

A serious cultural consequence of the Terri Schiavo drama has been the devaluation of the weakest among us into a disposable and exploitable caste. But it is not too late to reverse the tide. Jesse Ramirez, Haleigh Poutre, and the groundbreaking research into the treatment of serious brain injury are powerful reminders that where there is life, there is hope. Those who understand that all persons, regardless of capacity, deserve to be treated as beloved members of the human family have good reason to shake off the Schiavo rout and return to the fray.