Below is a guest post by Dr. David Tilstra. Dr. Tilstra is President of CentraCare Clinic and on the Board of Directors of CentraCare Health, a large health system (6 hospitals, more than 400 physicians) in central Minnesota. He is also a practicing geneticist, so he is not one of those medical executives entirely detached from clinical practice. Recently he wrote about navigating the tensions that can develop between keeping patients satisfied and still providing them good medical care. Here is what he had to say. As a PICU practitioner, his points make a lot of sense in my practice.
I hear providers groan when we talk about the patient experience and some even tell me that they have no impact on the patient experience, that’s an administration problem. Nothing further from the truth! If you interact with patients, you influence the patient experience. Some providers think a full waiting room is a measure of patient satisfaction. Actually, it’s a measure of how long patients will tolerate a long waiting process before they go elsewhere. These days the patient impatience is growing short and they will go elsewhere.
Patient experience is not to be confused with patient happiness. We are not Disney World; we are a health care delivery system. Everything we do will not make people happy, but they still can be satisfied and can have a good experience with their health care. The customer is always right isn’t even followed in the business world anymore and we in healthcare shouldn’t have that attitude either. We need to deliver the best care for the patient. That is a core piece of what we do. Sometimes that is getting patients out of bed when they hurt. It probably won’t make them happy, but it’s necessary for getting the patient on the road to recovery. Sometimes we have to deliver bad news. It won’t make the patient happy, but how we deliver the news has a huge impact on their experience. Imagine a doctor walking in the room, telling the patient they have cancer and walking out (this has happened in our system). Now imagine a doctor walking in the room, sitting down, and telling the patient they have cancer and staying to listen and deal with the emotions (this also happens in our system everyday). The experience of the patient is very different. Are they happy? Probably not. Which had the better experience?
The patient experience starts with delivering safe care – no patient injured by medical care has had a good experience. Safety is priority number one. The next level of patient experience is high quality care – harder to define, but critical to delivering the best experience to the patient. As the mission statement says, we are here to improve the health of every patient, every day. Quality is critical to improving the patient’s health. Third, we have to focus on how we deliver the care. Patients are looking for caring, competence and professionalism in their health care provider. That is the provider’s responsibility in improving the patient experience. The administration’s duty is to get the frustration out of the process – get the phones answered quickly, smooth the registration process, etc.
Last why is this important? You could say it’s a business issue – patients are more willing than ever to go elsewhere for their care if they don’t have a good experience. We won’t be in the healthcare business if we don’t pay attention to the patient experience. More important, these are our friends and neighbors. It’s the right thing to do. It’s how we become the leader in Minnesota for quality, safety, service and value.
One aspect of the endless vaccine debate is the aspect of coercion some parents feel about requiring children to be vaccinated before they can go to school. The government mandates vaccination. But this isn’t really an absolute requirement. Although all 50 states ostensibly require vaccination, all but 2 (Mississippi and West Virginia) allow parents to opt out for religious reasons, and 19 states allow this for philosophical reasons. (See here for a list.) Still, in general vaccines are required unless the child has a medical reason not to get them, such as having a problem with the immune system. Is this an unprecedented use of state power?
In fact, historically there have been many examples of the government inserting itself into healthcare decisions of individuals and families in order to protect the public health. Some of these go back many years. Quarantine, for example, goes back to medieval times, centuries before the germs were discovered. It has since 1944 been a power of the federal government; federal agents may detain and send for medical examination persons entering the country suspected of carrying one of a list of communicable diseases. Quarantine has also been used by local and state governments, particularly in the pre-antibiotic era. Diphtheria is a good example, as you can see from the photograph above. Quarantine can be abused, and has in fact been abused in the past for discrimination against certain minority groups. A brief paper from the American Bar Association details some of those instances here. The paper even suggests that it should be abolished for these reasons. But the practice is a very old one.
Of course the government mandates many things for the protection of public health. Milk is pasteurized (although there are raw milk enthusiasts who object), water is purified, and dirty restaurants can be closed. Like quarantine, these measures restrict our personal freedom a little, but what about government-mandated medical treatment? That sounds a bit more like the situation with compulsory vaccination of children. As it happens, there are more recent examples of compulsory treatment, particularly involving tuberculosis.
A couple of decades ago I was involved in a case of a woman with active tuberculosis who refused to take treatment for it. Worse, her particular strain of TB was one highly resistant to many antibiotics, so if that spread it would represent a real public health emergency. The district judge agreed. He confined the woman to the hospital against her will so she could be given anti-TB medications until she was not longer infectious to others. At the time I thought this was pretty unusual. When I looked into it, though, I found that there have been many instances of people with TB being confined against their will until they were no longer a threat to others. The ABA link above lists several examples of this.
So it’s clear to me there is a long tradition of the state restricting personal freedom in the service of protecting the public health. Like everything, of course, the devil is in the details.
I’ve been involved in several boisterous Twitter debates about vaccines, at least to the extent that one can debate using snippets of 140 characters or less. I’ve also been a Super Moderator at a very large Internet message board (AbsoluteWrite) for many years and have seen my share of passionate vaccine debates there. I’ve been a pediatrician for over 30 years and trained in the subspecialty of pediatric infectious diseases before I went into critical care. So I think a lot about vaccines and have watched controversies about them come and go for a very long time. It’s been interesting. One very interesting aspect for me is trying to understand how parents think about the relative risk of medical treatments and procedures for their children. It’s different from how physicians think of risk, and I think this difference is key to understanding the continuing ferment over vaccinations. I’ve previously written about the risk of a vaccine injury (about 1 in a million at worst) compared to the risks of everyday life, but there is another aspect to the issue: in my experience parents are uniquely worried about vaccine risk in ways they are not about other medical procedures and treatments. A few examples illustrate my point.
Stevens-Johnson syndrome is a severe skin reaction to something, most commonly a medication. It varies in severity but can progress to a very bad condition known as toxic epidermal necrolysis. This is a life-threatening condition and often requires a prolonged stay in the intensive care unit. I have seen several life-threatening cases over the years. The drugs that can cause it are quite common ones. Many are antibiotics; sulfa drugs, for example, are well-known offenders. How common is this condition? There are about 300 cases per year in the USA. This makes it much more common than vaccine injury, yet nearly all parents think of antibiotics as safe drugs. On balance, they are — but they are not risk free.
Medications like antibiotics can cause other kinds of allergic reactions, which can be severe or life-threatening. A very conservative estimate is that about 0.01-0.05 % of all people — about 1-5 per 10,000 individuals — will have such a serious drug reaction in their lifetime. Yet parents accept prescriptions without worrying about that.
Another example is anesthesia. As part of my practice I anesthetize many children for procedures, such as MRI scans. The risk of doing this is low, but it is well above zero. The actual risk of death from an anesthetic is around 1 in 250-300,000 — about 3 times the risk of a serious vaccine reaction. There also may be neuro-developmental risks to young children who receive anesthetics. That risk is very low, too (there are many studies ongoing to define it), but it is not zero. Of course if a child needs emergency surgery the balance of risk versus benefit overwhelmingly favors using the anesthetic, but there are many other situations that are not so clear-cut. Yet virtually all parents willingly allow me anesthetize their child.
My point is that vaccine risk, compared with the risks of other medical interventions, causes particular concern among parents, and I am not sure why that is. However, it is not new. Since the introduction of the very first vaccine, Edward Jenner’s use of smallpox vaccine, people have been particularly suspicious of vaccines. (The name “vaccine” itself is derived from Jenner’s use of the vaccinia virus, the cowpox virus, as a protection against smallpox.) As noted in the essay linked above:
Although the time periods have changed, the emotions and deep-rooted beliefs—whether philosophical, political, or spiritual—that underlie vaccine opposition have remained relatively consistent since Edward Jenner introduced vaccination.
I suppose the notion of putting a foreign substance into a child’s body with the intention of provoking the body to react to it is philosophically distinct from giving a child a medication that is not intended to do that. But I would be very interested in what other people think makes vaccines unique.
It seems lately that questions of medical ethics are coming up more and more in the news, things like the rights of patients to make decisions, definitions of futile care, and end of life care. The way to look at these things is not in a vacuum. All of us may have our own opinions about right and wrong, but the field of medical ethics is actually one that has a body of research and accepted practice. It certainly is something we deal with frequently in the PICU. It may sound esoteric, but generally it isn’t. Even so, it can be complicated. But complicated or not, it’s also something all of us should know a little about. This is because, in fact, many of us will encounter these issues quite suddenly and unexpectedly with our loved ones, or even ourselves. It is good to be prepared and knowledgeable. The cartoon above suggests it’s all about the law and medical tradition. Really, it’s more complicated than that — and more interesting.
So what are the accepted principles of medical ethics? There are four main principles, which on the surface are quite simple. They are these:
1. Beneficence (or, only do good things)
2. Nonmaleficence (or, don’t do bad things)
3. Autonomy (or, the patient decides important things)
4. Justice (or, be fair to everyone)
The first of these principles, beneficence, is the straightforward imperative that whatever we do should, before all else, benefit the patient. At first glance this seems an obvious statement. Why would we do anything that does not help the patient? In reality, we in the PICU, for example, are frequently tempted to do (or asked to do by families or other physicians) things that are of marginal or even no benefit to the patient. Common examples include a treatment or a test we think is unlikely to help, but just might. Should we do it just because somebody wants it?
There is a long tradition in medicine, one encapsulated in the Latin phrase primum non nocere (“first do no harm”), which admonishes physicians to avoid harming our patients. This is the principle of nonmaleficence. Again, this seems obvious. Why would we do anything to harm our patients? But let’s consider the example of tests or treatments we consider long shots — those which probably won’t help, but possibly could. It is one thing when someone asks us to mix an innocuous herbal remedy into a child’s feeding formula. It is quite another when we’re considering giving a child with advanced cancer a highly toxic drug that may or may not treat the cancer, but will certainly cause the child pain and suffering. Should we do it?
Our daily discussions in the PICU about the proper action to take, and particularly about who should decide, often lead us directly to the third key principle of medical ethics, which is autonomy. Autonomy means physicians should respect a patient’s wishes regarding what medical care he or she wants to receive. Years ago patients tended to believe, along with their physicians, that the doctor always knew best. The world has changed since that time, and today patients and their families have become much more involved in decisions regarding their care. This is a good thing. Recent legal decisions have emphasized the principle that patients who are fully competent mentally may choose to ignore medical advice and do (or not do) to their own bodies as they wish.
The issue of autonomy becomes much more complicated for children, or in the situation of an adult who is not able to decide things for himself. Who decides what to do? In the PICU, the principle of autonomy generally applies to the wishes of the family for their child. But what if they want something the doctors believe is wrong or dangerous? What if the family cannot decide what they want for their child? Finally, what if the child does not want what his or her parents want — at what age and to what extent should we honor the child’s wishes? (I’ve written about that issue here.) As you can see, the simple issue of autonomy is often not simple at all.
The fourth key principle of medical ethics, justice, stands somewhat apart from the other three. Justice means physicians are obligated to treat every patient the same, irrespective of age, race, sex, personality, income, or insurance status.
You can see how these ethical principles, at first glance so seemingly straightforward, can weave themselves together into a tangled knot of conflicting opinions and desires. The devil is often in the details. For example, as a practical matter, we often encounter a sort of tug-of-war between the ethical principles of beneficence and nonmaleficence — the imperative to do only helpful things and not do unhelpful ones. This is because everything we do carries some risk. We have different ways of describing the interaction between them, but we often speak of the “risk benefit ratio.” Simply put: Is the expected or potential benefit to the child worth the risk the contemplated test, treatment, or procedure will carry?
The difficult situations, of course, are those painted in shades of grey, and this includes a good number of them. In spite of that, thinking about how these four principles relate to each other is an excellent way of framing your thought process.
If you are interested in medical ethics, there are many good sites where you can read more. Here is a good site from the University of Washington, here is a link to the President’s Council on Bioethics (which discusses many specific issues), and here is an excellent blog specifically about the issues of end of life care maintained by Thaddeus Pope, a law professor who is expert in the legal ramifications. If you want a really detailed discussion, an excellent standard book is Principles of Biomedical Ethics, by Beauchamp and Childress.
The recent media coverage of the tragic case of Jahi McMath (I wrote about it here) has been sad to read. As near as we can tell from the media reports, this unfortunate child has been declared brain dead but her parents have arranged for a facility to provide continued organ support: that is, she is legally dead but her heart and other organs continue to function with the aid of all the high-tech tools we have. Although there has been a media circus surrounding the case, the scenario provides a useful opportunity to think about just what we mean by death, how we define it.
A key aspect to me is we don’t die all at once. Our bodies consist of a collaborative community of cells working together. At any given moment, some members of this community are being born and others are dying. With very few exceptions the cells in your body as you read this did not come into the world with you when you were born. Some cells live for many years, but others only live a few days. So what are we? We are cellular cooperatives that work together to do all the things to keep our bodies going. Yet few if any of these cells will live long enough to be part of “you” when “you” die. Death happens when all the cells in your unique cooperative quit, more or less (but not entirely) at once. Death is not a precise moment; like life, death is also a process.
So what is this “you” who is reading my words? Perhaps that is a question more appropriate for philosophers and theologians to answer than medical physiologists, but I think most would say the “you” consists of the collective efforts of the cells of your brain that maintain your consciousness and make you a unique individual. If and when that team of brain cells quits, there is no more you. That is the fundamental notion of brain death.
Brain death as a legal (and philosophical) entity is a relatively recent notion. The idea is that when the brain, the physical locus of the person, is gone there is no person left behind. This concept was supported by the doctrine that nerve cells, particularly brain cells, do not reproduce. I was taught that the brain cells you have are those you were born with. Now we think otherwise; under some situations nerve cells can reproduce. But that is not in any way saying a dead brain can heal and come back to life — that doesn’t happen.
It is no secret that the impetus to define brain death was driven by the capability we have now to do organ transplantation. For many years organ donors were virtually all beating heart donors, meaning they were declared dead even though their hearts were beating. Now we also have what is called donation after cardiac death (DCD). In this scenario a patient’s family (or the patient) requests withdrawal of life support in a hopeless situation. When that person’s heart stops beating, he or she can immediately become an organ donor. How long after the heart stops? In some DCD protocols the interval can be a short as 120 seconds. Yet clearly the cells of the person’s body are not dead, or else we could not transplant the organs. Can that person’s brain cells still be alive, too? I think the answer is probably yes. But understand that this person, or his family, has chosen to end life support and allow nature to take her course, which is to progress to death. The doctors are doing nothing unnatural. DCD is now widely done but is still controversial in some ways. You can read about that debate here. I’ve also written about it in the past myself.
What do I think? I think brain death is a valid concept and I reject the notion that doctors are jumping to declare people dead who are not in order to get their organs or save medical costs. But I also think we should continue to refine our understanding of just what brain death means. Our current definition of brain death came from a committee, and we all know how problematic that can be.
When I pronounce a child dead by brain death criteria I use the standard bedside tests. My own practice is always to add a simple study demonstrating no blood flow to the brain, even though this test is optional in some hospitals. If there is no blood flow to the brain the person cannot survive, even though their organs can go on functioning for a time. I think that is a key distinction to make.
Those of us who practice critical care medicine have the privilege — and it is a privilege — of participating in an eons-old ritual of humanity: deciding what is life, and what is death. It can be controversial, and it should be.
It’s time again for bronchiolitis, which usually comes in winter through spring. In some ways this problem is similar to asthma, but in other important ways it is very different. With winter upon us it’s time to reacquaint ourselves with this common entity. There is a reliable seasonal arrival of the virus we call RSV, the chief cause of bronchiolitis. The letters stand for respiratory syncytial virus, a description of what it looks like when it grows in the laboratory.
To scientists, RSV is a fascinating virus with several unique properties. One of these is its behavior in the population. When it’s present, RSV is everywhere. Then it suddenly vanishes. There are exceptions to everything in medicine — I have seen sporadic cases during the off-months — but generally RSV arrives with a bang in mid-winter and then leaves suddenly in the spring. It’s the only virus that consistently and reliably causes an epidemic every year, although it often alternates more severe with milder visitations. RSV epidemics often have some regional variability. For example, often one city will have a much more severe epidemic than do others in other regions of the country. Right now my colleagues on the East Coast tell me there is quite a lot of it; I haven’t seen so much yet.
Another aspect of RSV that interests medical scientists is how poor a job our immune systems do in fighting it off. Virtually all children are infected with RSV during the first few years of life. Not only that, all of us are reinfected multiple times during our lives. Attempts at devising a vaccine for RSV have all been unsuccessful. In fact, early versions of an experimental vaccine seemed to make the disease worse in some infants, raising the possibility that some aspect of our immune response to the virus actually contributes to the symptoms.
RSV has a high attack rate — the term scientists use for the chances that a susceptible person will get the infection if exposed to it. That, plus our generally poor defenses against it, explain the frequent epidemics. Every year a new crop of susceptible infants enters the population.
So what is bronchiolitis? What does it look like? In medical terminology, adding the ending “itis” to a word means that whatever comes before is inflamed. Thus tonsillitis is an inflammation of the tonsils and appendicitis means an inflamed appendix. So bronchiolitis is an inflammation of the bronchioles, the final part of the system of air-conducting tubes that connect the lungs with the outside world. Beyond the bronchioles are the aveoli, the grape-like clusters of air sacs where the business of the lungs — getting oxygen into our bodies and carbon dioxide out — takes place.
Bronchiolitis, like asthma, is a disorder of blocked small airways. This prevents air from getting in and out normally, primarily out. But the principal source of that blockage differs between the two lung problems. In bronchiolitis, the main problem is that the bronchiole tubes are blocked from swelling of the walls and from debris caused by the RSV infection — bits of broken airway cells and mucous plugs. The picture above shows what it looks like.
Infants are the ones who have the most trouble breathing with bronchiolitis. There are several reasons for this, but a key one is the construction of an infant’s chest. When small airways get blocked, we use our chest muscles — tightening them — to force air in and out of our lungs. We are helped in doing this by the fact that our lungs are encased in a fairly rigid rib cage; when we use our muscles to squeeze or expand our chest the system works like a bellows. Infants can’t do this well because the ribs across the entire front half of their chest are not yet solid bone — they are still soft cartilage. So when a small infant tries to suck air in against anything that is restricting airflow, like clogged bronchioles, his chest tends to sink inwards, causing what we call retractions. These are easiest to see just below the last ribs. They also have trouble forcing air out, so their chests become hyperexpanded with air, making it look as if their chests are puffed out a little. The other reason infants have so much trouble handling debris in their bronchioles is that these tubes are already much smaller to start with, so they get more easily clogged up than do the larger airways of older children.
How does a child with bronchiolitis look? Typically they are breathing faster than the normal respiratory rate of 25-35; often they are puffing along at 60-70 breaths per minute. They also will show those chest retractions and have a cough. Fever is uncommon. They may look a bit dusky from not having enough oxygen in the blood. They often have trouble feeding because they are breathing so fast. The fast breathing, along with the poor feeding, often makes them become dehydrated. Our breath is completely humidified, so when we breathe fast we lose more water.
Can we do anything to treat this illness, make the symptoms better, make it go away faster? Sadly, the answer is that our toolkit is pretty unsatisfactory. I’ve been taking care of children with RSV for over 30 years, and I’ve seen a long list of things tried — breathing treatments, anti-viral medicines, steroids, medicines intended to open up the small airways. None of them work very well, if at all. Even though the symptoms resemble asthma in some ways, none of the asthma medicines work very well, although often we try them just to see because the occasional child will get just a little better with them. The research over the past few years is conclusive — the best we can do is to use what we call supportive care and wait for the infection to pass, meanwhile helping breathing as needed with oxygen, clearing the lungs of mucous, and sometimes a mechanical breathing machine, a ventilator, in severe cases.
RSV is generally not a serious illness, but for some children it can be life-threatening. Usually these children are very small infants, especially those born prematurely, and those with underlying problems with their lungs or their hearts. For those infants we have a monthly shot (called Synagis) that helps reduce the severity of RSV when they get it, and may even prevent a few cases, but it is not an ideal treatment. But older and otherwise normal children, such as toddlers, can get severe cases. We have no idea why that is.
Since RSV cannot be prevented, the best thing a parent can do is try to postpone it. That is, if you have a newborn infant in the height of RSV season, try to minimize exposure of your child to people with cold symptoms, especially toddlers. And for those who do handle your infant, have them wash their hands first. If your child gets bronchiolitis it is a good idea to take them to the doctor for an evaluation unless the symptoms are very mild. The usual course of the illness is a week or so.
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.
Gastroenteritis, often called “stomach flu,” is common in children. It has nothing to do with influenza, the “true flu,” which is caused by a respiratory virus. Gastroenteritis is caused by a different set of viruses. These viruses are generally transmitted by what physicians call the fecal-oral route, which sounds kind of gross. What we mean by that term is that the bug is in our intestinal tract and gets on our fingers. When we touch things without washing our hands properly we can pass it on to other people who touch the same thing and then touch their mouths. Of course toddlers don’t wash their hands, so the illness is particularly common in them. Gastroenteritis can cause severe vomiting and diarrhea, which can lead to dehydration and a trip to the doctor, but usually it passes within a few days.
For many years rotavirus was a very common cause of gastroenteritis in small children, but now a vaccine has reduced its incidence. Nature being nature, a new virus is taking its place and is emerging as the most common cause for gastroenteritis, accounting for 20% of cases. It’s called norovirus, and it’s a pretty amazing beast. In particular, it’s astonishingly infectious, making transmission quick and easy for it to accomplish. A recent report in the New England Journal of Medicine gives us some information about how it behaves.
The most amazing thing is how few viruses a child (or you) needs to get into their system in order to cause illness. Most micro-organisms need thousands of individual bugs to cause disease. Norovirus needs just 10 to 100. Considering how small a virus is that is quite astonishing, making norovirus one of the most efficient pathogens I’ve ever heard of. It is possible to contract the infection just by walking by someone with it because, unlike rotavirus, norovirus can also spread through the air. In one outbreak, 300 people were infected in a concert hall when they walked through a lobby where an ill person had vomited on the floor. It’s a huge problem in the food industry: in one outbreak a single infected food worker contaminated 76 liters of icing that went on baked products, causing disease in 3,000 people over the course of 4 days. Norovirus is responsible for about half of all cases of food-borne illness in the US.
To put some perspective on how common it is, by the age of 5 years, the authors of the New England Journal article calculate that norovirus will have caused 1 in 6 children to see a doctor in the office and 1 in 14 children will have visited the emergency room because of it. One in 278 will have been hospitalized, usually for dehydration. That’s pretty common. The peak incidence is 6 to 18 months of age.
For a parent, the key to taking care of your child with gastroenteritis is to keep them from becoming dehydrated. Here are some details about how to do that. At this point there is no simple test for norovirus. Knowing it’s there doesn’t affect therapy. But my recent reading about it has given me new respect for it.
Offhand you would not think a child with severe viral pneumonia and one with a major head injury are much alike, but they are. Together they illustrate a great truth of pediatric intensive care medicine, which is much of what we do is not specific treatment for the child’s problem; rather, it is what we term “supportive care,” because it supports the continued functioning of the child’s vital organs and systems while the problem runs its course and the child heals.
Both of these children often require very sophisticated technology to provide that organ support, things like mechanical ventilators and devices for measuring pressures inside the brain, but that technology doesn’t actually cure anything. But if it doesn’t cure anything, what does it do?
One of the most important principles of supportive care in the pediatric intensive care unit is that we make sure what we are doing does not make the problem worse. A good example of that is the child with a severe head injury. Although there are a few things we do to help the situation, a key aspect of what we do is the maneuvers we go through to make sure the brain is given a chance to heal without further stresses. For the child with severe pneumonia, the sort of child who is often on a mechanical ventilator machine, we do a similar thing — we use the machinery in such a way to minimize the chances that the ventilator itself does no harm, although this is not always possible.
This kind of watchful waiting at a sick child’s bedside is something parents have done for millennia. What the PICU often offers is simply an updated version of that time-honored vigil. I find that both comforting and reassuring. Deep down, essential things have not really changed much.
The measles virus is among the most infectious of all known viruses, with an attack rate of well over 90%. That means that over 90% of susceptible people — those who have not been vaccinated or who have not had the disease — will get it if exposed. I’ve seen one case, and that was thirty years ago, although my parents showed me a picture of what I looked like with measles in 1958. It was like the picture above.
Before the introduction of a vaccine in 1963 measles caused about 4 million cases annually in the USA, leading to 48,000 hospitalizations and 500 deaths. That’s a lot of kids in the hospital and a significant mortality. The measles vaccine has nearly eliminated these things, but not entirely. I recently ran across an interesting article from a couple of years ago that investigated a measles mini-epidemic that happened in Southern California. One thing that caught my eye, something I had not considered before, was the economic cost of the epidemic.
The outbreak happened when an unvaccinated seven-year-old child returned from Europe after being exposed to measles there, and proceeded to expose other children. Like many viruses, people who are infected shed virus before they know they are sick; think of it as a crafty strategy the virus uses to spread itself.
Although 879 people were exposed, most of these were vaccinated so only 12 secondary cases occurred, all in unvaccinated children. Nine of these children were deliberately unvaccinated, but three of them were too young to have received the vaccine. One three-month-old had to be hospitalized. Forty-eight children too young to be vaccinated had to be quarantined at home for several days.
The authors estimated the economic costs of the entire epidemic, including lost work time for parents, costs of treatment, and time spent by the health department investigating it, at nearly eleven thousand dollars per case. So besides saving lives, measles vaccine reduces healthcare costs significantly.