The last few posts have been about medical ethics, both practical issues and more abstract ones. A recent symposium in The New England Journal of Medicine is an excellent place for you to read and ponder a major ethical conundrum. The symposium consists of three editorials (here, here, and here), as well as a live round table discussion, which you can watch here. The editorials are brief, easy to read for non-physicians, and the video of the round table lasts 17 minutes. The issue at hand is what is called cardiac donation after cardiac death.

I’ve written before about how the demand for organs to transplant far exceeds the supply of available organs, and thus many patients waiting on a transplant list will die on a transplant list, still waiting. This is particularly the case for a small subgroup of those patients — very small children needing heart transplants. The symposium is centered around a scientific report in the same issue of the journal, in which three infants received successful heart transplants. To understand the ethical issue you need to know how organ transplantation is done.

The ethical cornerstone of the practice seems simple and obvious — an organ donor must be dead before he can donate organs. But that means we must all agree upon what “dead” is. Until several decades ago the standard definition of death was irreversible cessation of cardiac function — the heart stops and cannot be restarted. Since then we have added a definition of brain death to that — irreversible cessation of all brain function, including what we call the brain stem. Nearly all organ donors are declared dead by brain death criteria.

The infants in this case series, however, did not receive their new hearts from brain-dead persons. All three organ donors were devastated and dying, but they did not fulfill brain death criteria. Their families had made the heart-wrenching decision to withdraw life-support, a perfectly ethical decision. Once that was decided, the donors’ hearts stopped, were removed three minutes later for one patient and seventy-five seconds later for the other two, and then transplanted in the needy infants. The problem some see with this protocol is that a heart that is removed from one person and then placed in another, and which restarts there, has clearly not lost “irreversible function.”

The core issue, I think, is that when we die the organs within us die in stages, not all at once. At what point are we dead? Any line we draw is arbitrary until all our organs and the cells within them are dead. By that time, of course, they are useless to save anyone else’s life by transplantation. One of the writers in the symposium believes donation of a heart by this protocol is unethical because, by definition, the donor isn’t dead. Another writer points out the historical arbitrariness of our definition of the precise moment of death.

For myself, I participate in donation after cardiac death protocols and believe them to be ethical. But I also acknowledge the complexity of the issue. I highly recommend you watch the video round table. If you are interested in really delving into how complicated problems in medical ethics are worked out, I also recommend the brief articles. It is an emotional and difficult topic, but I know of no better way to illustrate for you how the PICU can highlight some of our most difficult ethical issues.

In the last two posts I’ve written a little about medical ethics in a particular context — that of technology-dependent children. In this post I’ll expand the discussion to give you a brief user’s guide to medical ethics. It isn’t an esoteric subject. In fact, many of us encounter medical ethics quite suddenly and unexpectedly with our loved ones or even ourselves.

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)

Beneficence
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 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.

Nonmaleficence
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 might treat the cancer, but will certainly cause the child pain and suffering.

Autonomy
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 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? As you can see, the simple issue of autonomy is often not simple at all.

Justice
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. 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 a collection of many other sites of interest. If you want a really detailed discussion, an excellent standard book is Principles of Biomedical Ethics, by Beauchamp and Childress.

A few days ago I wrote about what life is like for technology-dependent children — those children who rely on some item of sophisticated medical equipment to survive. In 2008, the express train that is our rising medical costs is hurtling toward the brick wall that is the finite limit of our resources. The annual medical bills of technology-dependent children can top several hundred thousand dollars, and a very large proportion of them receive government support of one kind or another to pay this cost in part or entirely. This is because virtually no one can afford these kinds of bills, and most of these children will (or have) reached the cap on their private insurance coverage, if their family had it.

What are we to do? The ethics of the matter are that a physician’s duty is not to an abstract thing called “society”; it is to an individual patient. That means caring for the child as his parents wish and not considering the cost of the care. It does not mean doing whatever the parents ask, such as providing futile care that only prolongs a hopeless situation. Providing life-support technology to the sort of child I’m writing about is not futile care — these children just need it to support them, and with it can live full and meaningful lives. But without it they will die.

Here enters the vexing issue of “quality of life.” The fundamental point to me is that no one can dictate to anyone else what that means — it’s an individual choice. In the case of a child, it’s the family’s choice. For example, Steven Hawking, the famous astrophysicist, has chosen to continue on total live support in spite of being totally paralyzed, and has even continued to work and write books in that condition. Clearly, although I’m sure he’d rather not be paralyzed, he’s willing to continue with his current quality of life.

My fear is, assuming nothing changes, when the train of costs finally crashes into the brick wall of limits, someone will put a stark dollar value on a human life. But really, they already have. The calculation is called quality-adjusted life years (QALY), and it’s used in Britain to determine what treatments the healthcare system will pay for and what it won’t. (It turns out their cut-off is about $60,000/QALY.) Our own government puts the value of a human life at just over 7 million dollars.

What we are talking about, of course, is rationing. We do desperately need some kind of medical cost control or we’ll go bankrupt. But technology-dependent children and their families are a small, relatively powerless group. I never want to see the day when they are denied care because of the cost. Surely we have many, many other places to look for savings in the non-system that is American healthcare before it would come to that.

Anyone who works in a children’s hospital, and particularly in a PICU, soon comes to know many children we call technology-dependent. This term includes a wide variety of children with a wide variety of problems, but a good working definition is a child who requires some item of technology to stay alive. This requirement need not be minute-to-minute. For example, some children require feedings delivered by a mechanical pump, either into their veins or into their intestinal tract. If the technology fails for some reason, the parents usually have several hours at least to bring their child to the doctor to fix the problem.

For some technology-dependant children, however, their reliance on machinery really is minute-to-minute — if the equipment fails, it’s a life-threatening emergency. These usually are children on mechanical ventilators — respirator machines. The day-to-day life for these children and their families is complicated. For example, everyone who cares for the child must be trained in how to trouble-shoot the machinery as well as in more than basic CPR if everything quits working. The machinery takes power to run, and every family needs to have a plan for what to do in the event of a power failure. These are only a few of life’s complexities for these children.

How many of these children are there in the community? Those of us who work in pediatric intensive care believe the number is increasing steadily as our technological capabilities increase. Are there any data about this? The answer is some, but not as much as we’d like.

For large university children’s hospitals, the prevalence is quite high. One recent such study estimated 20% — 1 in 5 — of all the children discharged from the hospital were dependent upon technology in some way, and 1% of these needed a ventilator. Of course large, tertiary children’s hospitals see only the sickest of children: what about the general population? The only comprehensive data I could find for the USA are twenty years old, when a study from the federal Office of Technology Assessment estimated the total as 50,000 children (or about 5/100,000 persons) were technology-dependent, 2,000 of these needing ventilators. A 2006 study of just home-ventilated children for the state of Utah found a 25-fold increase over the intervening decades in the prevalence of this most fragile subgroup of children. There is no reason to doubt that what is going on in Utah is not going on in the rest of the country.

Besides complicated lives, these children and their families also have very expensive lives. How expensive? Ten years ago I looked at the bills of several of my ventilator-dependant children, and they ranged from $75,000 to $300,000 per year. At that annual cost many families quickly reach the cap on their health insurance policies. There is help for them, although it varies from state to state (and the process is long and complicated), with such things as Medicaid waiver programs and Supplemental Security Income from the Social Security Administration.

With the number of these children increasing dramatically, accompanied by a corresponding increase in cost to our cash-strapped healthcare system, what are we to do? Anything? In the abstract, I think it is unethical to deny anyone care based upon cost. But the example of technology-dependant children is a real-life example of where the abstractions of the healthcare debates meet the reality of children’s lives. As a society, we can’t buy everything for everybody. Yet amid all the hub-bub of the debate, we can’t lose sight of the plight of these children and their families.

Ground zero for many of the medical care debates today is the large, urban hospital — places such as Beth Israel Deaconess hospital in Boston. Even though it is one of the flagship hospitals of Harvard, it struggles along with all urban hospitals to balance its books every year and still carry out its mission. What makes Beth Israel interesting for anyone following the healthcare debates is that its President and CEO, Paul Levy, writes a blog called Running a Hospital. In it he is quite forthright, as when he wrote frankly about an egregious medical error.

What makes Levy’s blog unusual in the medical blogosphere, besides the stature of its author, is that he writes under his own name — most bloggers don’t, although a moderate amount of sleuthing can sometimes identify who they are.

Anyway, Levy recently laid out for anyone interested the nuts and bolts of how a major urban hospital plans its budget. It makes for pretty sobering reading. Long ago most large hospitals were charity operations, with physicians donating their time but patients having little or no say in what kind of treatment they got. These days hospitals, even the non-profit ones, are often urged to be run more like a business.

One of the fundamental differences between most businesses and a hospital, however, is that although hospitals have some control over the cost of the service they provide, they have little or no control over what they get paid to provide the service. It puts them in a severe squeeze when costs rise but reimbursement does not — they must find other sources of revenue to bridge the gap, and their options to do that are limited. (It turns out that philanthropy gives the best return on investment, about 16:1.) Levy’s blog gives you an insider’s close-up view of how a huge hospital like Beth Israel (1.2 billion in annual revenues) juggles these competing demands.

My own view? Healthcare is not a widget, a commodity. It’s a basic human need. It doesn’t follow the usual rules of the marketplace, and it shouldn’t.

Moderate to severe pain can be treated and relieved well over 90% of the time, yet most patients in severe pain don’t get adequate treatment. (Google ‘pain is undertreated’ and you get 130,000 hits, including many to respected medical journals.) This situation is even more pronounced in children — many, perhaps most, of children in severe pain don’t get enough treatment to relieve it. We love our children: how can this be so?

A large part of the answer is that pain is a subjective experience, and children, particularly pre-verbal children, can’t express that experience as adults can. Young children also don’t have the capacity to understand that their pain can be relieved. Children with chronic pain may even come to think of pain as the normal state of things.

Another reason for under-treatment of children in pain is that, until quite recently, we thought children didn’t experience pain in the same way as adults. Or, if they did, they would have little or no memory of it afterwards. When I was in training 30 years ago, even major surgery was sometimes done on infants with minimal pain relief. (You can read about those days, as well as how infants perceive pain, here.)

There were several other reasons given for under-treating pain in small children, summarized here. Chief among these was an irrational (and unsubstantiated) fear of addicting children to narcotics, the most useful agents for relieving severe pain. This fear of addiction was not confined to physicians — parents sometimes did not want these medications for their children because of it. Extensive research has now shown that this fear is groundless. There were other excuses. Powerful pain-killers have side-effects, one of which can be decreased breathing. But this occurs in both children and adults, and we have ways of dealing with it. So it is not a reason to withhold adequate pain relief from anyone, especially children who cannot speak for themselves.

There are other reasons to treat severe pain besides our ethical imperative to be compassionate — pain is bad for you. It interferes with tissue healing and recovery following surgery. It depresses the immune system, making infection more likely. It has long-standing effects on mental health later, especially in children. You can read more about the bad effects pain has on the body here and here.

If you are a parent and you believe your child is in significant pain, know that doctors can always do something about it, often relieving nearly all of the pain. Here is how we do it. Speak up, even if your child cannot.

Here is another post taken from my newest book, How to Talk to Your Child’s Doctor. This one concerns what I call the disbeliever.

All good doctors learn to filter what parents say to them during history taking, to examine each parental statement for reliability, likelihood, and sheer outlandishness. Parents of sick children are a cross-section of humanity and, like all of us, vary in their observational skills, their ability to express themselves, and their tendency to exaggerate or minimize what they see. Parents, not being physicians, may not notice and comment on things a doctor would notice. Good doctors also understand that parents of sick children, especially very sick children, are stressed by their situation and sometimes rendered more than a little incoherent by that.

In spite of all these issues, the fundamental principle of medical interviewing is that parents are virtually always telling the truth as they understand it. They will not see things as through a doctor’s eyes (unless they have read this book, of course), but they will nearly always faithfully report what they see if the doctor is reasonably skillful at bringing out the salient points during the conversation. Unless a doctor has very compelling evidence to the contrary, she assumes goodwill on the part of the parents. What that means in practice is that parents who give disorganized, difficult-to-interpret histories are not intentionally trying to deceive her; they are simply doing the best they can to describe what they see. The disbelieving doctor is not inclined to trust the truth of that statement.

This variety of poorly communicating doctor can be a troublesome one for parents to deal with. She may seem pleasant in conversation, but this kind of doctor also may come across to parents as brusque, even antagonistic and confrontational in demeanor. Parents interviewed by doctors like this sometimes feel as if they are being cross-examined, not interviewed; instead of a two-way, mutual conversation, the encounter feels more like a grilling by a suspicious police officer. That is an extreme description, but it is one parents have used when telling me about unsatisfactory encounters with doctors. Milder metaphors I have heard from parents about these situations include feeling like a teenager being quizzed by a parent over staying out too late, or like a student who has mislaid his homework assignment.

There are several underlying themes for this kind of dysfunctional conversation. One is that parents feel as if the doctor does not really believe what they are saying, as if the parents need to produce some objective evidence to prove that what they are saying is true. The nuance can be subtle, but nonetheless obvious. If most doctors hear a parent say, “Johnny had a fever,” they will follow up by asking how high the fever was. If the parent’s reply is something like “I didn’t take it—he felt hot,” most doctors note that fact and proceed with the interview. In contrast, the disbelieving doctor is inclined to say something like “Why didn’t you take his temperature?” or “Why don’t you have a thermometer?”

Physicians inclined to disbelieve what parents say to them are, at root, manifesting the old tendency for physicians to set themselves above the patient. Treating what parents have to say as being at best uninformed, at worst outright deceptive, is another example of how some doctors regard themselves as superior to others. It is another face of medical paternalism. From what I have seen over the years, I suspect that this attitude and behavior is a little more prevalent in pediatric practice than in other kinds of medical encounters because many parents of infants and young children are, in comparison to the doctor, themselves young. An age disparity between parents young enough to be a middle-aged doctor’s children and the doctor can make the doctor behave a little like a parent herself in how she treats her patient’s parents.

What should parents do if they find themselves meeting this kind of doctor? My best advice is to realize they are unlikely to change the doctor’s behavior much, and that overt confrontation generally does not work well because it tends to confirm in the disbelieving doctor’s mind her impression that parents, rather than being allies in the child’s evaluation process, are more often unreliable adversaries. It works better for parents to recognize what is happening and respond by taking extra pains to be precise and consistent in what they say, perhaps using statements like “This may seem strange to you, but . . . ” or “I know I should have paid more attention to the rash, but it seemed to me at the time that . . .”

An extreme tendency to disbelieve what parents are saying is a bad trait in a physician, and it likely will impede her ability to do the best job for the child. But as with other kinds of poor physician communicators, I think most disbelieving physicians are not fully aware of how their manner interferes with their interactions with parents. Still, it is not a parent’s job to educate the doctor about that, and it is probably best not to try.

Mental health services have for many years been the poor stepchildren in our healthcare system. Even families with “good” insurance often found to their dismay, when they needed it, that coverage of mental health problems was skimpy at best. Typically the total dollar coverage for all mental health services was capped at a fairly low number. Besides being unfair, even cruel, this practice makes little economic sense to our society; mental health problems are common, and untreated mental disorders lead to huge lost productivity.

We run into this problem from time to time in the PICU when we try to arrange care for children who need mental health care, such as depressed adolescents who attempt suicide (often by drug overdose) and end up in the PICU.

A major issue in getting parity in coverage is that the term “mental health problem” is quite broad, and specific disorders are sometimes difficult to define. The argument went that, if experts can’t agree on what something is, how can insurers be expected to pay for its treatment? The standard reference for defining mental health disorders is the Diagnostic and Statistical Manual of Mental Disorders (DSM), now in its 4th edition. The gamut of disorders this manual contains is wide, everything from severe schizophrenia to jet lag. Many insurers feared that granting parity to mental health claims would open a floodgate of trivial claims.

In fact, when mental health parity was allowed, this didn’t happen — the overwhelming majority of claims were for real, significant problems for which there is effective therapy. Once that became clear, insurers had no excuse any longer not to cover them. Congress recently passed a law requiring parity, but differences between House and Senate versions had the process stalled until a recent compromise.

This is a vital topic for many families. You can read two excellent discussions of the issue here and here.

I’ve written before about medical errors. Recently there was a horrendous one, in which a man in Boston got an operation on the wrong part of his body. Other than underscoring the fact that humans are fallible, what can we learn from this terrible incident?

There are supposed to be safeguards in place to prevent this kind of thing from happening. The process can best be summarized as confirming the answers to these questions: Are we doing this to the right patient, doing the right procedure, and doing it in the right place? Clearly this ‘time-out’ step was not done in this case. The result was tragedy.

The CEO of the hospital immediately admitted and evaluated the error here. It makes interesting reading. He admits the error, but he also makes oblique excuses for it, citing how chaotic and pressured the environment was, implying that somehow lessons the culpability.

The problem with that, as Dr. Bob Wachter explains on his excellent blog, is that we should plan for chaos and a pressured environment. It’s the way things always are. Dr. Wachter is a noted authority on patient safety issues. He uses examples as varied as the airline industry and service at the International House of Pancakes to emphasize that we certainly can devise systems that protect individuals — both the patients from harm and the doctors from ourselves.

Here is another post from my newest book, How To Talk To Your Child’s Doctor. It continues on the theme of how parents can deal with difficult doctors to get their child the care she needs.

How doctors treat patients’ need for information has changed significantly over the past decades. Sixty years ago medical practice was much more paternalistic than it is now, although some would say it continues to be so in important ways. Still, not too long ago it was common for doctors to tell patients or their families next to nothing about what was going on. The presumption always was: the doctor knows best. A corollary to this attitude was that telling patients and families the truth, accurately explaining the ins and outs of what was happening in a way they could understand, placed an unreasonable psychic burden on them; only the doctor had the strength of character to bear this burden.

As a profession, we no longer espouse that viewpoint. These days we maintain, or ought to, that patients are the ones who control their care. This does not mean patients call all the shots and select all aspects of what the doctor will do, but it does mean patients are in charge of important decisions affecting their bodies. For children, this means parents make the key choices.

It is the doctor’s obligation to explain to you, in a way you can understand, what is wrong with your child and what he proposes to do about it. Sometimes parents feel as if they are imposing on the doctor, inappropriately taking up his time, when they ask him to convince them he is evaluating their child in the best way. This is decidedly not so. The doctor who is a nonexplainer can suggest such a thing to parents by either resisting their questions or by implying he is doing them a courtesy by answering them. He is not doing them a favor; answering their questions is part of his job.

Parents who find their child being evaluated by a nonexplaining physician should simply press him for answers until they are satisfied. There is generally no need for confrontation. In fact, I have observed physicians who are chronic nonexplainers actually think they explain things satisfactorily, and are genuinely surprised when told they do not. So most times the nonexplaining doctor is simply a variety of the poorly explaining doctor.

There are some physicians who do a reasonably good job explaining what they think is the problem, but who for some reason resist telling parents the details about the tests they are ordering. Doctors like this often say something to the parents like, “We’ll check some tests,” and then leave it at that. But it is parents who will be doing the lion’s share of the actual explaining to their children about what is happening, so parents need to know explicit details about what is going to happen. Any parent who has dealt with the constant “Mommy why?” of a five-year-old knows this well. So ask about those tests, particularly if they involve anything painful for your child.