The Burden of Decision Making

Decision making in medicine has changed dramatically over the years. Several decades ago, paternalism was the norm; the physician would tell a patient or family what the best course of action was and that was that. Since then, we've swung way over to the patient autonomy side. We present a patient or surrogate decision maker with information about the risks, benefits, and alternatives of a course of action. We give them information about the diagnosis, tests, treatments. We may even expect them to do some research on the Internet. And what they decide becomes the course of action we take.

Sometimes, especially in constrained circumstances, this can become detrimental. In the intensive care unit, in shifting decision making to a family, we are also shifting the attendant burdens to them as well. Although we ask surrogates to make the decision in the patient's shoes with substituted judgment, they are still making weighty determinations and feel that pressure. I see this over and over again. There is a good amount of guilt that accompanies making someone do-not-resuscitate, even if it is the right thing to do and what the patient would have wanted. In writing the previous few blogs, I've encroached upon those situations where care is futile. Here, it is not the right thing to force the family to make a decision. If something is futile, it shouldn't be chosen, and that choice needs to be removed from the family's hands. When I have a patient who is moribund with no hope for recovery, I don't ask the family whether we should perform CPR if the heart stops. That's futile, and I make the decision and carry the burden of a DNR order. Though some say this is removing autonomy from families, I find that it in fact is relieving them of great stress, pressure, and expectation. I've had families express that my making the decision not to offer futile care made them feel so much better in knowing we were doing the right thing for our patients.

Ethics and Medically Ineffective Treatment II

Most of our cases of medically ineffective treatment happen in the ICU. For me, in particular, it's an interesting experience. For the most part, I don't think the goals of a critical care physician and a clinical ethicist conflict; after all, we strive to be as ethical as we can. However, in the large gray of the end of life where decisions have real consequences but little evidence, treating physicians may want help navigating care that may be futile. I've had so many families pray for a miracle for a loved one when from a medical and scientific standpoint, there is nothing more to offer. How do we tread those circumstances? On the one hand, it is easy to simply continue everything, giving the family that one last hope. On the other hand, prolonging the inevitable which usually involves suffering and loss of dignity is rarely the right thing for a patient. From a systems standpoint, we cannot sustain a health care infrastructure if we provide interventions and treatments that have no benefit.

In situations where families pray for miracles, who is to say what is futile and what is not? This is something that ethicists have grappled with and written about, and a commonly accepted threshold is that if the last one hundred patients who were in this situation and received this treatment did not have any benefit, then the treatment is futile. This can be quite controversial, and some people argue for a stricter threshold while others think this is too narrow. I tend to agree with it. Since we commonly accept a scientific trial to be significant if there is less than 5% of doubt, then setting the threshold at less than 1% gives me reasonable certainty in determining whether an intervention is worthwhile.

Ethically, withdrawing and withholding treatment is equivalent. That is, if I believe putting someone on a ventilator is futile and I do not offer it, I can also discontinue the ventilator in someone already on it if it's futile there as well. For families, of course, this feels entirely different. Many people accept when an intervention like dialysis will not be offered. It's much harder to go to them and say that since dialysis is not helping and not expected to help, we will withdraw it. I encounter all these situations in the ICU both as a primary treating physician and as an ethics consultant.

Ethics and Medically Ineffective Treatment I

Probably the most common ethics consult we get is one surrounding perceived, potential, or proven medically ineffective treatment. At least in California, physicians are not required to provide care that is not beneficial. Sometimes this is called futile care, but that doesn't go well with the public and policymakers, so we instead call it medically ineffective care. I think the phrase stirs up emotions about rationing care, death panels, and the like, but it's really not meant to be that. Antibacterials do not work for the common cold. High dose vitamins do not work for brain cancer. An endotracheal tube does not cure decompensated liver failure. Physicians are not obligated to and should not do things that they do not believe will work.

In practice, this gets muddy very quickly. We consulted on a pediatric patient who was started on a treatment by a community physician that has no evidence or even biologic plausibility for working (the disease is neurologic and the drug does not cross the blood-brain barrier). After being admitted to the hospital, the parents requested continuation of the drug, which the pediatrician believed was ineffective. Since the drug has side effects on the liver and kidneys (risks) with no benefit, we sided with the physician and found it ethical to stop that drug.

On the other hand, we had a similar pediatric case where the family was requesting a treatment that was not felt to help the child, but had few side effects or risks. Here, we said that it was ethically permissible to go either way - either to give the drug or to stop it. In looking at the ethical principles of beneficence of maleficence, we did not think the child would be harmed, and because the benefit was questionable, we left it up to the treating team to decide what was best. As with any other consultation service, we make recommendations of varying insistence. Sometimes, we find things ethically necessary, other times we find them simply ethically permissible.

Ethics and the End of Life

Most of our ethics consults involve patients at the end of their life. This is, of course, a sensitive time where each individual situation is different, and if there are many stakeholders, figuring out what's right for the patient can be obscure. Should a patient with both liver and kidney failure who is not a transplant candidate be offered dialysis? Say their liver disease and its complications are so advanced that life expectancy is only a few days; should they be offered dialysis? What if the goal was for them to be alive when family members fly in from other states and dialysis is necessary to bridge them to that point? What if you keep them alive for their family members? Do you then stop the dialysis?

It's easy to write generic summaries of these situations, but when you dig your teeth in, you find that every position is nuanced. From an ethics standpoint, we try to clearly capture all the factors going into a decision. What is the medical situation and what are the achievable medical goals? Can the miracles of modern medicine keep the patient alive, or is it futile? Can we keep them alive for a few days to achieve a short term goal? Can we keep them alive to reach evaluation for transplant? We try to understand the patient's preferences. What are her values and goals? Have prior preferences been given? Can the patient make decisions or do we rely on substituted judgment?

Most people jump to the third arm of decision-making: quality of life. What kind of life do we expect the patient to have, if medical care succeeds? What disabilities or dependencies might the patient have? How does the patient's values influence the way we weigh the quality of life for the patient? Lastly, we look at the context: are there conflicts of interest? Do legal, religious, or public health issues come into play? Who are all the stakeholders and what are their positions? Do we need to think about allocation of a limited resource?

In my experience, end of life conversations often hang up on just a few issues: probabilities and coping. In these situations, the likelihood of a "good" outcome is often nebulous, and both clinicians and family members struggle with the fact that the possibility of a good quality of life is low but not zero. If a surgery will work only a minority of the time, how do you weigh those risks and benefits? Coping is a challenge from family members who are ever optimistic. Primary teams struggle with having family members understand the severity of the situation, and when there is an incongruency between the family's wishes and the achievable goals, the ethics consult team often gets involved. Sometimes this is simply a communication or understanding issue, but more often than not, it's an acceptance issue. I completely understand how the end of someone's life can be hard to accept, but as an impartial ethics consultant, my goal is to objectively outline all these factors to do the right thing for our patients.

Viper

Back in 2011, I found a snake whose venom became the drug captopril. Only recently did I find out another snake, the southeastern pygmy rattlesnake has a venom peptide that acts as an anticoagulant. To physicians, this molecule is known as eptifibatide, and it's commonly used in the treatment of heart attacks. For whatever reason, I've always had a fascination for the unique inventions of nature, and it astounds me that a drug that we use to save lives, which costs thousands of dollars, is made by snakes to kill. It's a weird and awe-inspiring thought.

Journal Club

I recently presented at our department journal club. Every month, a fellow selects a recent pertinent research article and prepares an hour long talk presenting the context for the research, analyzing the data, and drawing conclusions on how our care should change. I picked an article looking at endovascular treatments for stroke. Journal club reminds me a little of a book club; lots of people show up, but not many read the assignment. There's always one or two people that show up fired up about the article. At the end of the day, we have a nicely intellectual conversation but it rarely translates to profound changes in our clinical care. I always wondered about the utility of discussing one article a month; so much out there is published, journal club is hardly a practical way to keep current with cutting edge research. Nevertheless, I do enjoy in-depth critiques of papers. I can almost always find flaws in the analyses, assumptions, or conclusions. In many ways, it reminds me of my days as a philosophy major when I would spend significant time deconstructing articles.

Medical Students Just Aren't the Same These Days

When I read history of medicine, I'm astonished by what people did. Medical students have made amazing discoveries. Of course back then, curricula weren't structured, and there was time and passion to pursue research, but what people accomplished is simply remarkable. In 1921, Frederick Banting and J.J.R. Macleod isolated the compound insulin, for which they won the Nobel Prize in 1923. However, often unrecognized is Charles Best, a fourth year medical student and a chemist J.B. Collip who probably did all the grunt work. In 1916, Jay McLean was a second year medical student at Johns Hopkins who isolated the compound heparin. It stuns me to think of the impact of these discoveries in the last century of medicine. I know medical students who have participated in impressive projects, but the past was a totally different era of research and discovery.

What Happened to Ebola?

Several months ago, the news erupted with concerns about a pending Ebola epidemic. I wrote a handful of blogs trying to understand the problem and predicted that we would be seeing much more Ebola by now. Of course, none of that has manifested. In fact, several times in the last few months, I've wondered to myself, how come all the media hype about Ebola has died down?

Perhaps it was much ado about nothing. But I don't think it was a bad thing. In the same way that prognosticating a disease course can be incredibly challenging, making predictions about the course of an outbreak is equally tough. Epidemiologists work off many assumptions, and when these variables are slightly off, these errors are greatly magnified in the predictions. For example, in the outbreak, we had no idea how many infected people were not presenting to care. We based the likelihood to infect or reproduction number (R naught) off historic data. We didn't know how effective our interventions would be in containing the outbreak. And as expected, the media honed in on the worst case scenario, which threatened a global pandemic of disease.

Thankfully, this did not happen. But the situation did have a number of consequences, some positive, some negative. It focused attention on the threat of emerging infectious diseases. As a result, money flowed into areas of health that needed it: infectious disease, epidemiology, international health care. The world opened its eyes to the needs and plights of third world countries. Hopefully, it reinforced the global nature of the world; there are no longer places of isolation, and we need to share our resources and help each other. However, the situation may have created a "cry wolf" effect. Next time this happens - and there's no doubt that it will - I hope responses will not be more sluggish because we got lucky this time.

Apricity

Apricity is the warmth of the sun. Sometimes it is important to just stop and gather in the world. I spend a lot of my time getting in before the sun is up and leaving after the sun is down. I can go weeks without thinking about that, but when I finally rediscover apricity, I realize how much I have missed.

Image shown under Creative Commons Attribution Share-Alike License, from Wikipedia.

Three Parents

As I catch up on reading The Economist and Time, I find a couple articles on Britain's recent approval of the creation of children with genetic material from three people. It's a little complicated, but an embryo's DNA has several components: the egg, the sperm, and the mitochondria (often forgotten). The mitochondria are inherited from the mother. Up until now, it's been mostly theoretical, but the concept is that the nucleus of an egg with damaged mitochondrial DNA can be transferred to the body of an egg with normal mitochondria, and subsequently fertilized. The resulting embryo would have DNA from three separate people (two women and a man) though whether they are all "parents" is a separate issue (in my mind). Although mitochondrial diseases are quite rare, they are often untreatable, and this creates a process for women with mitochondrial diseases to have children without risking passing their disease on. I don't think it'll be used very often, but the idea is fascinating, and at this time, Britain is the only place that recognizes it.

This will be controversial, I know. However, I don't think it's any different than screening embryos for an incurable or fatal disease. In this case, we are simply excluding mitochondrial DNA that is diseased. While doing so requires mitochondrial DNA from a third person, I don't think its "weirdness" or "unnatural nature" is a reason to ban it. Many procedures we do in medicine used to be "weird" or "unnatural" - from blood transfusions to organ transplantation to artificial hearts. That's not a good argument for prohibiting a medical procedure. Instead, we must look at its risks and benefits, and while most of the risks are unknown at this time, its benefits - allowing women with mitochondrial diseases to have children without passing on those diseases - are laudable.

Image of mitochondria and DNA is shown under Creative Commons Attribution Share-Alike License, from Wikipedia.