Chaos, Contingency and End of Life Care

“The choices we’re working with here are a block universe, where past, present and future all coexist simultaneously and everything has already happened; chaos, where anything can happen and nothing can be predicted because we can’t know all the variables; and a Christian universe in which God made everything and it’s all here for a purpose but we have free will anyway.”
― Audrey NiffeneggerThe Time Traveler’s Wife

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The laws of nature are the only ones that should be obeyed.  All others are contingent products of transient societal values.  What nature dictates should happen, happens.

One of the key principles driving the natural world is that of chaos.  Chaos refers to a state of disorder; it is characterised by unpredictability, mess and disruption.

Even when events have known causes which can be determined, some systems are so complex, delicate and sensitive that the long-term outcome of the system can never be predicted with accuracy – even though it is deterministic.  In chaos theory, an often used example is that of a butterfly flapping its wings; the tiniest of air disturbances contributes in one small part to the eventual development of changes in temperature and air currents which lead to the generation of a hurricane, hundreds of miles away. The “butterfly effect” refers to the way in which the tiny actions or events can cause significant changes in systems that are particularly sensitive to certain influences.   Even though we can break down the constituent causes of a hurricane into data that can be processed and understood, this will never enable us to accurately predict the ultimate consequence of the initial disturbance to the system that took place with the delicate flap of a butterfly wing.

The amount of disorder in a system is measured in physics in terms of entropy; the potential for chaos refers to the number of ways in which a system can be organised.  Naturally, two books on a shelf can only be ordered in a relatively small number of ways.  But increase this to thirty, make the shelf double-depth, and add a sizeable stack of papers and a half-empty mug of coffee, and the number of configurations of that shelf increases significantly.  The same is true for systems: the more complex a system is, the more ways of being that system offers.  The natural state of systems is for the systems entropy, or embodied energy, to increase – so a teenager, left to her own devices in a bedroom, will create in a remarkably short space of time a shrine to chaos itself.  Electric leads and chargers, neatly placed in a drawer, will over time render themselves into the world’s most complex spaghetti, ditto knitting wool.

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Complex systems are not unique to physics or astronomy; the human body is a perfect example.  Even though we are able to break down the body into its constituent parts and examine them, and to articulate the complex dynamic systems of the body that maintain its homeostatic equilibrium, it nevertheless never ceases to amaze us when the unexpected happens.  Our hearts may beat in predictable rhythms, each contraction born from the coordinated efforts of actin and myosin as they are energised, yet when this organ is placed within a human being it becomes impossible to predict how many times this heart will beat before it’s final squeezing effort, or of what witnessed natural phenomena will cause it to contract and race.  Chaos is characterised by its lack of order.  Even though the heart may appear to beat in a predictable fashion, providing neat ECG traces or reassuring bounding as we take a pulse, every single beat shows infinitesimally tiny variations.

So if chaos is a natural state, why do we spend so much energy trying to mitigate against it, and seeking (or trying to restore) order?  Terence McKenna, philosopher and self-titled psychonaut, observes that chaos is “what we’ve lost touch with.  This is why it is given a bad name.  It is feared by the dominant archetype of our world, which is Ego, which clenches because its existence is defined in terms of control”.

Death is the ultimate chaos.  It is the time at which the person we thought we were transforms from being into not-being.  In the face of death, the everyday and the mundane can become almost absurd.  Heidegger observes that being human requires that we are hurled into a world that has no clear logical or moral structure, no constancy, constantly faced with the prospect of the end of our own existence.   Humans value freedom and choice – nature values neither.  What will happen, will happen, regardless of most of the effort put into trying to steer the river.  So fear of chaos is commensurate with fear of death, and vice versa.  In general, a person’s attitude towards chaos will look remarkably like their views on death and dying.  This is why it can be incredibly powerful to ask a person how they deal with uncertainty in other areas of life and at different times, as a means of gaining insight into their sources of anxiety around dying.  The same is true of childbirth – ask any midwife. The more elaborate, precise and prescriptive the birth plan, the more things have the potential to go wrong.  but this largely relates to how accepting the woman is to  embrace the unexpected and adapt, the more powerfully transformative the birthing experience.  Advance care plans for people with terminal illness are no different; create a plan, of course.  It is a powerful tool for communicating preferences to a complex and confusing range of health professionals.  But along the way, know that things will change, and a good death perhaps relies less on what and where, and more on the how – How did this person learn to die? How did they surrender to the changes along the way? And how did they make sense of the meaning of their existence?

Embracing chaos requires learning the art of letting go, and trusting in the immutable truth of not knowing what lies ahead of us at any time.  It presents us with a challenge to shatter our tightly held self-concepts and allow things to unfold according to the law of nature.  The heartfelt account by Philip Simons of living and dying with Lou Gehrig’s disease is aptly entitled “Learning to Fall”.  His story conveys the sense that despite being blessed (or cursed) with free will, in reality we have very little choice over the time and nature of our eventual demise, yet depending on how we view this, we can either be shackled or liberated by the revelation.  The sense of chaos invoked by an experience such as Philip’s can lead to liberation and creativity.  Nietzsche reminds us that you “must have chaos within you to give birth to a dancing star.

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Much of the effort in palliative care is channelled into trying to make order out of chaos.  Sometimes this is fruitful; provision of out-of-hours helplines to reduce confusion in the midst of crisis, prescribing of anticipatory medications for the most commonly encountered symptoms of end of life, identifying key workers and discussing coordinated care – all of these are essential elements in palliative care.

But there remains an aspect of care which is challenging to the patient and professional alike; and these is the questions to which there is no certain answer.  “What will happen?” “How long do I have?” In allowing those questions into the dialogue with people about end of life care, there comes a point when the palliative care professional comes face to face with the uncertainty at the core of the role.  And we are then faced with a choice: to feign certainty? This may make us and the patient feel better, certainly in the short term, propping up the illusion of a knowable, quantifiable future.  Or admit to uncertainty and permit hope within it?  Much harder to articulate, but ultimately, and in the opinion of many, far more honest, open and truthful.  Our role is to learn to fall, so that we can help others to do the same.

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