Legitimacy, Obligation, and the Authority of Illness

In writing this post, I hope to accomplish two things:

  1. To inform you a bit about what I’ve been learning so far in my classes. (Only specific highlights, to make things digestible.)
  2. To speak of another part of my past life, Camp Kesem, and the disease the camp addresses: cancer.

The ideas I’m going to address will pertain to two of my classes that I’ve had so far: Contemporary Political Philosophy (CPP) (on anarchy, democracy, obligation, etc.) and Illness. I’m thoroughly enjoying my other classes, but I think I’ll leave them out of this discussion for the sake of being concise.

Now, to dig into the matter… I think I might have mentioned a few questions regarding what I learned about in this CPP class. This past week struck me as profound after we discussed what are called the instrumentalist theories as well as the idea of consent. Consent turns into a real interesting topic, especially when we think about how integral this idea is especially in the field of health (see small text below for a short diversion).

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Consent, in my mind, has been used as a shield to guard patient autonomy. Furthermore, in many circumstances patient autonomy is seen as something we must not infringe upon (almost taking up an anarchist view in this sense). It is completely unheard of practicing any bit of medicine on a patient without any bit of their explicit consent.

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Without explaining much, the instrumentalist theories (slightly) contradicted what we learned about anarchism. Anarchism (as told by R.P. Wolff) states, among other things, that humans are to remain completely autonomous beings that should not relinquish any of their autonomy to an authority, because there is no way for a government or an authority to be truly legitimate. In other words, it’s never okay to submit yourself to the power of an authority if you want to respect your dignity.

Despite how many times the anarchist can keep asking “how” and “why” to your presumptions about what’s okay in terms of obligation, I couldn’t reason with myself that anarchism was the answer to living a successful life myself, nor for society to be successful in any way that wouldn’t end up like what happens in The Lord of the Flies. Plus, if medicine was a complete anarchy, we wouldn’t have the ability to actually give consent and almost “turn over” our power to the medical professional. How would any progress actually be made? (See another small text for another diversion.)

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This merits an entire discussion on how we define autonomy. Some definitions might include:

  • Having complete freedom of choice, all the time. No exceptions.
  • The absence of any hinderance to the way one wants to live.
    • This means that, potentially, one could submit themselves to, say, a government or authority in order to give themselves more opportunities to live a better life, where if they denied the authority, they may in fact be hindering themselves more than if they didn’t.
  • Not ever submitting yourself to another individual’s power.

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This week of class, and the connected readings, brought some clarity to the question I posed before the small text (at least as much clarity that is allowed in political philosophy). Joseph Raz, when speaking on authority and legitimacy, brought up one of the instrumentalist theories, or the normal justification thesis (NJT). Raz proposes that one is justified in resting his own power in authority if, in that case, he believes that the authority has the expertise, knowledge, and time to devote to making a decision for him/her (“him/her” being the hypothetical “one” that Raz introduces) than he/she might not have.” Furthermore, Patrick Durning adds to Raz’s thesis that if the subject claims to have more knowledge or expertise than the authority in a specific problem, then they are justified to override the authority’s power and make his/her own decision in the matter at hand. (This theory would then lend itself to the definition of autonomy that I posed in the second bullet point of my most recent “block” text.)

Raz’s theory makes a little more sense to me, and can lead (in my mind) to a society functioning much better than us all deciding to become anarchists and not give any recognition to any central authority. Atul Gawande, in his essay, Whose Body is it Anyway?, manages to speak of (or around, I should say) this theory without even mentioning the NJT itself. Gawande speaks of when his 11-day-old daughter, Hunter, stopped breathing due to an unknown reason, which led to Gawande and his wife taking their daughter to the hospital. After some testing, the medical professionals ended up at a proverbial fork in the road. It was suspected that Hunter had a lung infection, but they wouldn’t know for sure for a few more days until the lab results could properly come in. Hence they could have put Hunter on a ventilator, posing many risks to her little body, or alternatively they could have let Hunter push through, risking her body of a shut down and her subsequent death. As the patient (since a child’s autonomy is extended to her parents in most cases), Gawande had the complete ability to make the decision to put his daughter on a ventilator or let her push through. However, in this instance, he chose to defer the decision to the medical professionals, despite his ability and expertise that would give him full capacity to make his own decision.

Following Raz’s NJT, Gawande assessed the situation, showed that he had the right expertise to make a decision for himself and not pass on his autonomy to the authority. But he still refrained in making this decision. Would Raz say that Gawande was not justified in passing this decision to the medical professionals, when he was on par with them professionally and was more familiar with his own daughter, therefore making him more qualified to make his own decision regarding his daughter’s health?

Hunter ended up living, but what if she ended up dying because of this decision? Would Gawande have published this story? Largely with Whose Body is it Anyway?, Gawande is trying to make a point that sometimes a doctor’s paternalism might be justified, and I think Raz’s NJT supports this idea. (If the doctor, or the “expert,” is seen as the one with better faculties to make a decision for a patient (but not necessarily in Gawande’s case), then it would actually free up the patient to live a less hindered life if they release their autonomy to the doctor’s whim.)

Okay, so I might have just walked you through a pretty obvious point, making it more obvious with some cool philosopher’s knowledge and discussion. But the heart of the matter is what happens when we succumb to what I believe to be a truly dominating authority in our lives, that of which truly relinquishes our autonomy (in the “hindrance” definition I’ve used). I could speak of illness in general, but I want to highlight one in particular, that which has been a growing, silent, and deadly killer of our century:

Cancer. 

It’s highly likely that any one of you reading this blog has lost a loved one or at least knows someone who has been affected by cancer. I lost my grandma and my great grandma to cancer, and this may be considered lucky in relative comparison to other families. Cancer takes a hold of one’s life, not only physically but also socially: we see the disease literally wrapping its hands around the patient, the brother, the daughter, the mother… yanking them in to whisper in their ear: I will force you into thought about your mortality; I will hold you from normalcy; I will stigmatize you; I will make your life hell.

If a lawyer representing the U.S. government did the same thing I just described, I would be pretty skeptical of this government’s legitimacy. However with cancer, we must relinquish all of our faculties to make choices to this disease. Sure, we can make the choice to get chemotherapy or attack the cancer in some way, but these methods usually come with terrible side effects, are not 100% effective, and cast the patient into an eternal state of remission, never being cancer-free. In my mind, we lose autonomy when cancer takes over our lives. I couldn’t help but make this connection when I was reading about authority and obligation to obey in Raz’s work.

As much as I want to have an answer for you, or a theory about how truly deciding to obey or not obey cancer will actually do anything about the cancer itself. What I’m talking about is pretty theoretical and in reality, in practice, these ideas may collapse into thin air. But I want to explore this idea further, despite that risk: what happens when we do submit ourselves to the authority of cancer? I’m not speaking only about the patient, because cancer is something that affects the entire family. And this is where Camp Kesem comes into play.

In one sentence, Camp Kesem is a summer camp meant for kids whose parents have been affected by cancer. It’s not a camp for kids with cancer, and it’s not a camp where kids go to only talk about death, sickness, and the disease that has ravaged many families. This is a camp where kids come to have fun, to find kids like them who understand what cancer does to a family. They go to a place with families who all have one thing in common: they have had to obey to the authority of cancer.

For some reason, though, camp has turned into a place of refuge for me and for many of the campers who come back every year. Camp Kesem is a family, and some of the strongest connections that I am aware of in this life have formed out of being together for only one week. One week – that’s how much time has passed since my last blog post, and I think I stand pretty neutral on where most of my friendships are (which are in a good spot – don’t worry!). How can we find such refuge that was founded from cancer,  that which has coerced us into devoting our mental, physical, and monetary resources into a disease that many times ends in death? After asking this question, my mind pointed me back to the Dominican Republic. I think I might have described this situation before, but I’ll describe it again:

We, being myself and the fellow interns for a Dominican NGO called FUMSIL, were on a vacation day and decided to go to the south coast of the DR. We went to a beach town called Jarabacoa, were we could choose to swim in an (ice cold) river or in the sea. We chose the sea mainly because it was warmer. Before I left for the water, one of my Dominican friends, Kiko, told me to be careful with the ocean. Okay, if a Dominican tells you to be careful with the ocean, it means that this matter is pretty serious. So I go down the rocky beach and go towards the water. I enter in about four feet, only to be slammed by a wave that knocked me to by rear, then proceeded to drag me across the carpet of small pebbles and rocks. Woah, I thought, Kiko was right.

Now that I knew of how powerful this ocean was, I had a newfound respect for this beast of nature. The next time I went out into the waves, I gave in with all of my faculties – I believed the ocean to be a completely legitimate force of power, and let the ocean take control. And to let such a large, governing force of nature take over my life, toss me about, was in a sense liberating, because I had gathered a great sense of respect for the ocean as well as for how fragile my own life was.

Cancer is not the same thing as an ocean, but does submitting ourselves to some greater force of nature that is out of our control generate in us a newfound sense of respect in our lives? Does this respect for life, then, let us appreciate what we have more, and let us use our own faculties more efficiently and in better, more productive ways in our lives? With this question in mind, I think back to Camp Kesem. What I experienced with these kids, largely, was that they all had some kind of profound respect for life that I only really saw consistently in the kids who went to camp. Was this respect a factor of having had to learn how to obey the  nasty, authoritative force that is cancer?

Perhaps, without writing too much more, I might make a small conclusion from these thoughts. Instead of trying to resist the obligation to admit to the authority of cancer, why not admit to its authority? (Admitting to the authority of cancer would not be the same as admitting defeat, however.) Cancer, put bluntly, is an expert in matters of mortality, but in my experience, it is those who fully well acknowledge the authority that cancer has in their lives, who can then use more of their faculties to live with cancer and, hopefully, live past cancer. By ignoring cancer, and remaining in solitude to fight it alone, we cannot win against such a ravenous disease.

This conclusion might be weak, and I will probably have better skills to tackle these thoughts in a few months’ time, but consider this a chance to explore what goes on in my mind when I’m spending countless hours in the library reading through this new field of philosophy. To end, I’m going to leave a things a bit brighter and give you a picture of my birthday “cake” from yesterday, in addition to a birthday latte.

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One thought on “Legitimacy, Obligation, and the Authority of Illness

  1. Thank you Jeff you are very wise for not taking care of patients. You are very aware of how disease can affect everyone and yes when people let go and accept the disease process it seems that they can live more fully even through the pain. Faith/spirituality is a big component of how people handle these major life events….

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