Posts Tagged ‘OK’

On brain death and the Jahi McMath story

January 21, 2014  |  General  |  44 Comments

The recent and unfolding tragedy of Jahi McMath, the 13-year-old girl who died following complications of tonsillectomy and adenoidectomy, has focused many people on the question of brain death. Although I have no more details about this case than anyone else reading the news, I am quite familiar with the sort of things that happened to this unfortunate child. As many of you know, her family does not believe she is dead, although multiple physicians have documented she is and the county medical examiner’s office (the coroner) has issued a death certificate. The latest news is that she has been transferred from Oakland to a facility in New York.

So what is brain death? It means no function at the level of the brain stem or above. Function stops where the spinal cord joins the base of the brain. How do we know somebody is brain dead? There are a series of standard and relatively low-tech bedside tests to determine that. We first make sure the patient has a normal body temperature and has no sedating drugs in their system. There should be no purposeful response to any stimuli. The muscles are flaccid. Then we test for brain stem reflexes. One of these is response of the pupils to light — there should be none. There needs to be absence of normal movement of the eyes to motion of the head (called doll’s eyes) or no movement when we put cold water on the ear drum (called cold calorics); both of these measure the same reflex. There should be no blink reflex, called the corneal reflex, when a wisp of cotton is brushed on the eyeball. There should be no gag reflex when we stimulate the back of the throat with a wooden tongue depressor. Finally, the last test of brain stem function is the apnea test: we allow the blood carbon dioxide level to rise and look for any effort to take a breath. Rising blood carbon dioxide level is a strong trigger to the normal brain to breathe, and failure to do so means this ability is lost.

What happens after the bedside brain death determination varies a little from hospital to hospital. Many hospitals require 2 tests 24 hours apart; if both show no brainstem function, the patient is legally dead at the conclusion of the second test. As an alternative, we can do the bedside test followed by a simple scan to determine of there is any blood flowing to the brain. These two tests together give us an immediate answer, and many hospitals require the flow study for children. If the bedside examination shows no brainstem function and the flow study shows no blood flow to the brain, the patient is legally dead. I write the time of death on the death certificate as the time of the scan.

When I do these things I always want the family with me and watching what I do as I explain what is happening.

That all seems straightforward. As with this case, sometimes it’s not. For one thing, not all cultural traditions recognize brain death as real if the heart is still beating. I’ve been in that situation. For another, sometimes there are reflexes at the spinal cord level that look as if the patient is alive. That’s a difficult thing to watch.

The upshot is that I have continued support — mechanical ventilation, often medicines to support heart and other organ function — on a brain-dead patient for some time. Usually this is because the family wants some time to cope with things, or else there is a family member traveling to the hospital. I’m always OK with that, up to a point. A key principle here is that a family cannot force me to behave unethically, and continuing organ support of a dead person is disrespectful of the dead — mutilating to the body. Many ethical traditions, including my own, refuse to do that.

The longest I have ever continued organ support on a dead person was 6 weeks. We had a huge court battle similar to this case, with the court ultimately allowing us to withdraw support. A family member then attempted to enter the hospital with a gun. It was ugly.

The bottom line is that, with the exception of the one case above, I have always been able to mediate the situation by listening to families, being frank about my own duties (both legal and ethical), and allowing them time to grieve. I have always regarded caring for dying people and participating in their death as an honor granted me by the family.

I think there is more going on in this case than we know. Why this case became so adversarial is probably a complicated issue, and these complexities do not translate well to the evening news. At the very least, clearly the hospital and doctors failed to establish a relationship of trust with the family.

Regarding the child’s cause of death, I’d lay odds she had sudden bleeding from the tonsilar bed, the tissues under where the tonsils were. This is a well-known complication after tonsillectomy if the clots fall off. After that I think she probably lost her airway, either from obstruction from blood clots or some other reason. She was a large girl undergoing the procedure because of sleep apnea. Such people often have difficult upper airways to access and control with a breathing tube in a hurry, and that was what she probably needed. The back of the throat is also quite inflamed immediately after this kind of surgery and a rebleeding tonsil site can obscure everything with a large quantity of blood. I know this from experience. It’s a difficult situation to manage. I assume she went 4-5 minutes without an adequate airway, leading to brain damage and subsequent brain death. This is a common progression after anoxic brain injury — lack of oxygen — from any cause.

There are some directly antagonistic ethical issues in play here. Patients, and their families, are in charge of medical decision making. But they don’t have the right to demand whatever they want. This can be as simple as requesting a test that is not medically indicated or as complicated as this case. Futile care is unethical, particularly if it causes pain to the patient. Of course in this case the patient is already dead, so one could argue that there is no harm in persisting. But there is ethical harm, I think.

I have been in the situation of requesting, on behalf of a family, transfer of their brain dead child to another facility when we have reached an impasse. That is my obligation to them. But no facility I have ever dealt with would accept transfer of a dead person; I wouldn’t, and I am surprised the family was able to locate one.

One other thing I’m occasionally asked: Has anyone who was declared brain dead ever been found later not to be dead? I am unaware of any cases of this. If you hear of such things you need to understand that a patient in a deep coma, totally unresponsive to the world, is not dead. They still have the reflexes I described above intact. Once in a while such a person awakens.

At any rate, nature has a way of deciding these things no matter what we puny humans do.

Technology-dependent children, revisited

September 22, 2009  |  General  |  No Comments

I last wrote about technology-dependent children two years ago. The term is a broad one, but it describes those children who rely on some piece of technology, such as a mechanical ventilator, to live. They are fragile and challenging children to care for for physicians, but much, much more so for their families.

I’ve been looking for information to tell me more about how many such children there are in America, but haven’t found any nation-wide information beyond what I described last time. What I have found are some interesting and compelling descriptions of what it is like to be a parent with such a child.

This interview from last spring describes a study in which 103 mothers of technology-dependent children were interviewed and screened for indicators of psychological distress. The author found that about 25% of mothers were at risk for depression, although the study didn’t specify how many of these mothers actually were clinically depressed. It also didn’t give any important background control information; in particular, it didn’t say what the expected rates of these things would be among mothers with normal children. The author did offer some commonsensical advice about how healthcare providers can help families prevent this. Interestingly, the findings did not correlate with the particular kind of technology the child needed.

In my own experience, mothers (and families) of technology-dependent children are quite resilient psychologically, although I’ve not done a formal survey. Recently I ran across this blog by a mother of such a child. Her can-do attitude seems more along the lines of mothers I’ve met in this situation. She’s got an excellent summary of what life is like, and what she expects, in what she calls a “Bill of Rights for Special Needs Parents.” Here it is — it makes sane and inspiring reading:

We have the right to expect our kids to be seen for who they are as individuals, not as labels or diagnoses.

We have a right to trust our instincts about our kids and realize that experts don’t always know best.

We have a right to ignore the remarks, questions and stares and not give explanations or excuses for why our children are the way they are.

We have a right to choose alternative therapies for our kids.

We have a right to roll our eyes straight out of our heads when we encounter certain mothers who brag nonstop that their kids are the smartest students/best athletes ever.

We have a right to wonder “What if…” every so often.

We have a right to play aimlessly with our children. Not for therapeutic or educational purposes—just for fun.

We have a right to blast Bruce Springsteen/ Tom Petty/Any Rocker, down a glass of Pinot Grigio, get a pedicure, go out with the girls or do all of the aforementioned at once if that’s what it takes to avoid burnout.

We have a right to react to people’s ignorance in whatever way we feel necessary.

We have a right to not always have our child be the poster child for his/her disability and some days be just a child.

We have a right to go through the grieving process and realize we may never quite be “over it.”

We have the right to give our kids chores. Even better if they can learn to make breakfast in bed for us.

We have a right to stretch the truth when we fail to do the exercises the therapist asked us to do this week because we were too darn tired or overwhelmed.

We have a right to have yet more Pinot Grigio

We have a right to fire any doctor or therapist who’s negative, unsupportive or who generally says suck-y things.

We have a right to tell family and friends that everything may not be OK—at least not how they mean it, anyway.

We have a right to hope for an empty playground so we don’t have to look into another child’s eyes and answer the question, “What’s wrong with him?”

We have a right to bawl on the way back from the playground, the birthday party, the mall or anyplace where our children’s challenges become glaringly obvious in the face of all the other kids doing their typical-development things.

We have the right to give our children consequences for their behavior. They may be “special” but they can still be a royal pain in the ass.

We have a right to take a break from Googling therapies, procedures, medicine and treatments for our kids to research upcoming concerts, exotic teas or anything not related to our child’s disabilities.

We have a right to talk about how great our kids are when people don’t get it.

We have the right to not always behave as inspirational icons who never complain or gripe about the sometimes awful realities of raising a child with special needs.

We have a right to expect quality services for our children not just when they’re infants, preschoolers and elementary school age, but when they’re in older grades and adults, too.

We have a right to adequate funding for those services and to not have to kick, scream or endure a wait for them.

We have a right to get tired of people saying, as they give that sympathy stare, “I don’t know how you do it.”

We have a right to wish that sometimes things could be easier.

We have a right to cheer like crazy anytime our children amaze us—or weep like lunatics.

We have a right to push, push and push some more to make sure our children are treated fairly by the world.