I spend a lot of my time thinking about dying. Not in a morbid way, but in the way in which death is an inevitable portion of my job. One of the things that I had never really given any consideration to is how rare of a characteristic this is in a pediatrician . I mentioned my interest in palliative medicine to one of the younger students and he replied with "but I thought you wanted to go into pediatrics?"
It's true that kids die very rarely. However, it is also true that the sorts of conversations that happen at the end of life have a lot in common with the sorts of conversations that happen in pediatrics. In both there is a time at which we no longer make decisions as directed by the patient personally, but as directed by someone who (hopefully) loves the patient and makes decisions in the way in which they think that the patient would. Many geriatricians and palliative medicine doctors would argue that the difference is that in the care of the adult who is no longer able to make decisions for himself or herself, we have a history of decisions that he or she has made and (in the rare, but ideal case) a set of directives that has been left. However, there is a multitude of evidence now that the decisions that we say we would make in given circumstances are not the decisions we do make when we are in the circumstance. The inherent problem in the concept of "substituted judgment" (i.e. making a decision on someone else's behalf in the way in which we think that they would have made the decision were they able to themselves) is that it requires the idea of a static identity. Do you make decisions on the basis of what the person would have wanted a year ago, even if they may have had some dementia at that point or as they would have ten years ago before they had any dementia or as you predict that they would be now if the person who they were ten years ago never developed dementia?
This is in fact more complicated with kids, although I would argue it is more difficult the older the child is. With a baby one can make certain generalizations -- no one will fault a physician for assuming that an infant will value life, wellness and cognitive function. The other major wrench that makes this easier is that the younger the patient, the more likely that if you can get them to survive you can get them to good long term prognosis -- children are extremely hardy. On the other hand, teenagers have their own independent thoughts and values and those should be taken into account; however, if a teen is catastrophizing, for instance, how much of that is a normal developmental position and how much is the teen's personality.
I had a case of a teenager who was near, but not at, the age of majority. This teen had a diagnosis that was inevitably terminal, likely within the next few years at the outside. The teen wanted to transition to focusing completely on palliation, rather than curative therapy. The parents wanted to continue to try more curative therapy, reasoning that the field could change sufficiently within a couple of years that new treatment may be available. In this particular case, the prognosis was really quite grim, and ultimately, after many meetings with the family, the decision was made to transition to palliation and the patient passed away. However, what if the prognosis were not grim? Treating cancer typically requires several months of treatment, during which the patient may lose their hair, will experience extreme fatigue and be nauseated. If the prognosis is terrific, it is easy to suggest that the parents should require their minor child to undergo it. If the prognosis is truly terrible, it is viewed as cruel to force a child to undergo it. But what should be done in the intermediate cases? Patient-centered medicine dictates that we allow the patient to weigh the costs and benefits in their own value system. But for children, several months is a very long time and the future gain seems very theoretical; therefore, the gain assigned by most children will be less than most likely would be assigned by the same individual were they an adult. On the other hand, bodily autonomy is an important developmental milestone throughout childhood, and it feels uncomfortable to force a child to undergo such physical discomfort.
On the other hand, I've spent five weeks on services focused on end-of-life discussions, and at least in my experience, most of the media attention on end-of-life issues is really overblown. The vast majority of the time, the patient and the treatment team agree in their view of where the patient is at in the life course; what reasonable goals are for care and when to transition to palliation as a primary goal. When there's disagreement it seems to be roughly evenly split between the patient ready to be done with curative therapy before the treatment team and the treatment team before the patient. Both ways, the conflict is typically resolved usually by a discussion of what the patient's goals are.
My current attending likes to focus on the "levels of hope" -- that it's typical and normal even for patients who are terminal and know that they are terminal to still hope for cure. That this is not unrealistic or denial, but rather analogous to the person who buys a lottery ticket or gets average grades but applies to Harvard medical school. He asserts that this is not at all unhealthy, as long as it is not the exclusive focal point. The patient should also have hopes that are not dependent on a cure, such as resolution, relationships, spiritual closure or whatever is important to that particular patient. Patients who don't want available curative therapy usually don't have anything against curative therapy, but are hoping not to have more pain, for example and patients who do want curative therapy, when it's not really realistic, often want it for the sake of something else. By focusing on these primary goals, rather than what needs to be done to get there, it's easier to get the physician and patient on the same page. It's a good technique. I'm not sure whether it will be helpful in a pediatric setting, but it's another tool in the toolbox, which I'm sure I'll use some day.
In the last six months, especially, the majority of tools I've been gaining have been communication and philosophical skills and efficiency; not that I've stopped learning physical exam techniques or medical science, but the ratio is changing. When I interviewed, I referred to these as "ancillary skills" -- that most medical schools focus on scientific knowledge, but that to be a good doctor, it's important to know how to be a professional, to know how to have hard conversations, to know when a conversation is necessary and when to let the decision a patient or family makes stand unchallenged, etc. It's February; in five months, there will be patients for whom I am their primary care doctor. There will be babies for whom I will have been the only pediatrician that they've ever had. That, more than the idea of being the intern on-call for the NICU, more than the idea of being the first doctor in the room for a code, more than the idea of having to do lumbar punctures and arterial lines, scares me. That is what motivates me to learn as much as I possibly can (even though senioritis is kind of creeping up on me.) I want to be the sort of pediatrician that my teenage patients can come to about sex and drugs; I want to be the sort of pediatrician who can counsel worried parents about vaccines; I want to be a trusted advisor. I've learned a shockingly large amount in the last four and a half years; I think I'm going to be OK.
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