Sat, May

Death Politics: When are We Dead and Who Gets to Decide?


GELFAND’S WORLD--The editor of CityWatch sent me a news clip along with a question, "Is this a column?" Translated, that editorial question refers to whether the story of Israel Stinson provides important public policy questions, the kind that CityWatch covers. Israel Stinson was a two year old boy who had been kept barely alive through life support. Machines kept his lungs moving artificially. At the order of a judge, the life support was disconnected and the boy passed away almost immediately. 

The grieving parents are asking why their baby couldn't have been kept alive. The lawyers are asking why the hospital was in such a rush to pull the plug without bringing in the parents for one last visit. Members of the public commenting on internet sites are split as to whether life support should have been continued. 

There are numerous public policy questions. There is also a question of simple humanity that doesn't seem to be getting any play. That's because, sadly, it goes against the grieving parents, the pro-life organization that was representing them, and members of the public who donated money. 

Israel Stinson was barely two years old when he suffered a serious asthma attack. There are many children who get asthma, but luckily only a few get it badly enough for it to be a risk to life. Israel was one of the unlucky ones. His ability to take in oxygen became so limited that his heart stopped. News stories indicate that doctors worked on him for about an hour, using CPR while trying to get the heart to restart. Eventually the heart restarted, but the question remained, how much damage had been done? In retrospect, he had probably suffered widespread, irreversible brain damage in the first few minutes of his heart stoppage, but the doctors couldn't know this for sure at the time. All they could do is wait and watch. 

Faced with an uncertain outcome, the medical profession understands that there is nothing to do but provide supportive care and then just wait and see. So that's what they did. But eventually, after appropriate testing, they recognized that Israel Stinson was truly gone. They could keep his lungs moving and stimulate his heart to beat, but faced with evidence of his widespread, massive loss of brain tissue, they concluded that Israel was brain dead. 

Parts of our bodies can withstand the loss of oxygen for a substantial period of time. People get freezing injuries, yet somehow not lose all their toes. But the brain is an exception. Brain cells die rather quickly, and as far as medical science knows, once lost they stay lost. The cases where stroke victims recover function are generally attributed to the fact that other parts of the brain can learn to take over where the original tissue has failed. But when there is widespread, massive loss of brain cells, there isn't much to provide recovery. 

The case of Israel Stinson, as described in the Los Angeles Times by Erica Evans, establishes the simple facts, and then delves into the competing legal claims. Videos on YouTube provide the pro- and con arguments. There are numerous legal issues that are left hanging. Does a hospital have the duty to provide life support to a person that is brain dead? As the hospital sees it, they are being asked to tend to what is little more than a corpse. To the parents, things are different. They have the opportunity to spend time with their baby, whether or not he is responding in the way they would like. They have memories of his birth and subsequent life. They try to maintain hope. 

To the cold blooded rationalist, all hope for Israel was false hope. This may be, but the most cold blooded of rationalists has to concede that the choice being thrust upon the parents was horrifying beyond belief. They desperately wanted to believe that their child would get better, and doctors were telling them that this would never happen. In the meanwhile, they were getting some comfort by visiting with him, hugging him, tickling him to try to evoke some response. 

Some people are able to make the decision to pull the plug. Others are not. Sometimes it's because they can't bring themselves to make a decision that is so painful. Other people won't accept the fact that when brain function is irreversibly lost, their loved one is -- for all intents and purposes -- gone. They can see the chest moving in and out, and the occasional twitch, and for some, this is hope. 

The parents were advised to take him off life support. This is a polite way of saying that his breathing would no longer be created artificially, and he would almost immediately die, in body as well as brain. 

The parents refused. They kept the body of their son alive, going so far as to take him to Guatemala for interim treatment, then bringing him back to California. There is some question as to why the local hospital here in Los Angeles accepted Israel as a patient, but they did. But finally, recognizing his brain dead condition, the hospital petitioned the courts to allow them to pull the plug. The parents had the help of pro bono legal support and won a few days and a little false hope. Then a local judge pulled the plug judicially, and the hospital performed the physical act of turning off life support. 

The Los Angeles Times reporter Erica Evans began the account of Israel's last moments by describing him as "angelic-looking." It's true. The pictures look like a sleeping baby. It's only when you see the YouTube videos that you realize that there is almost no response to continued prodding and poking, in spite of the parents' desperate belief that they are seeing something going on. 

I am going to make a conjecture here. The parents saw Israel as injured, but somehow still with us. In photos, he looks like a sleeping baby. The parents refer to their strong religious beliefs, and felt (I think sincerely) that God was telling them to keep going. That's how they describe their beliefs on video. Perhaps they hoped that some day, this sleeping baby would awake to some level of normality. In brief, the parents were viewing their baby as comatose, and capable of recovery. It's true that some people in comas eventually wake up, sometimes years later. But they have to have intact brains for this to happen. 

These beliefs were opposed by members of the medical profession. There were several neurologists who did the standard, accepted tests, and concluded that brain death had occurred. The news story says that the doctors "declared the boy brain dead," as if it were an arbitrary ruling rather than a careful judgment based on the evidence of physical examination and lab tests. 

One YouTube discussion involved the legal definition of death. The attorney pointed out that in some states, death is defined as the cessation of heart beat rather than brain death. It was kind of irrelevant in the context, but it is part of the wider public policy question. 

Another public policy question that is of utmost importance but was avoided almost entirely, involves whether there is any obligation for any entity, public or private, to continue providing long term care. Lack of payment in a system which avoids government funded of national health care is just one element in the discussion. The other question is whether an entity, public or private, can be compelled to continue treating a person that is, in their judgment, already dead at the level of the brain. It's a legitimate question. 

I'm going to change the subject just a little, and make a serious comment that is not meant to be morbid or rude, but is based on a real life experience. It's a comment that I don't see very often in these debates over heroic measures and prolonged life support. 

The context of this comment involves the shooting death of a friend that happened a little more than 19 years ago. I can remember looking down on the body, which had a gunshot wound where his right eye had been just a few minutes earlier. The bullet had obviously gone through the eye and into the brain. 

I remember staring for perhaps 15 seconds, watching carefully to make sure that he was really dead. My thought in the stress of the moment was this: Why would anyone want to survive that kind of wound? He would be blind, probably mostly paralyzed, and severely damaged in his ability to form any thoughts. I don't think he would have chosen to survive that level of destruction if he had had any say in the matter. 

How could you want anything like that for your friend or spouse or for your own child? Obviously the parents had a different sort of hope. They tried to believe that Israel would come back to life and live normally. 

But in trying to keep their child alive, they were also ignoring the fact that getting a little better would be the worst thing that could have happened to their baby, because there wasn't the surviving brain tissue for him to get truly better. 

I truly believe that from the moment of his cardiac arrest, Israel felt no pain and endured no suffering. It's not a lot, but it's the best we have. 

Addendum: The Epi Pen 

Whether Israel Stinson's story is a legitimate part of the national healthcare debate, the Epi Pen scandal certainly is. As almost everyone knows by now, the number of pharmaceutical companies making automatically injectable epinephrin dwindled to one. Given their newfound monopoly status, the company raised rates, and raised them again, and yet again. This is what private companies do when faced with a chance to make serious money. 

It's almost amusing to see members of congress complaining. Isn't the congress the organization that refuses to allow Medicare the chance to negotiate drug pricing? Isn't this the organization that could have invented some federal agency to oversee drug pricing, the same way that the state of California has some regulation over automobile insurance rates? They didn't, but they are complaining.


(Bob Gelfand writes on science, culture, and politics for CityWatch. He can be reached at [email protected])


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