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.