Tuesday, July 30, 2013

Learning Patience as a Patient: Time as the Forgotten Element in Care


One of the first principles that I learned in medical school was that every illness has a “natural history”.  The good doctor and nurse, I was taught, only intervene in that illness progression at the right time.  Try to do tests to diagnose or try to treat too early and you may put the person at risk and actually harm the patient.  Wait too long and you may miss the opportunity to cure the illness.  So the first task of helping anyone is to find out where, in the natural history of disease, they actually are!  That is often a first step before even making a diagnosis, since trying to make a diagnosis for a set of symptoms that are most likely to get better on their own accomplishes nothing except putting the patient at greater risk.  In the best model of patient autonomy and physician-patient partnership, helping the person understand this time basis for medicine when they are sick, tired, scared, and impatient can be a real challenge for any health professional. 

At one point in time, when the tools that medicine had to treat someone were limited, the ability to determine where someone was in the illness progression was almost the only skill that physicians brought to the table.  In the pre imaging, pre antibiotic, and pre-anesthesia eras, diagnostics was limited to the doctors senses, what he could see, hear, smell and feel and therapeutics was almost nonexistent.  However that ability to predict for the patient and the family what was likely to happen and counsel them accordingly was critical and was often the difference between a gifted physician and a mediocre one.  The doctor who could reassure accurately that the person would get better and who could also say that someone else was likely to succumb to their illness would be helping the patient and the family prepare for the next step in their life journey. 

In today’s world, thankfully we have many tools at our disposal to positively impact the natural history of disease.  However, there is still a right time within that natural history to take action and a right time to wait and let nature take its course.  Even today, the good doctor, nurse and therapist understands that and is able to time both the diagnostic tests and the therapy in such a way as to maximize the benefits and minimize the risks. 

This is very difficult in practice.  Patients come in with their own beliefs that are set by our society.  Physicians, nurses and other health professionals are not immune to those cultural norms.    We live in a world of immediacy.  We live in a culture and in a country in which the central myth is that death and illness is optional: a culture that has a world view that every problem has an immediate solution and every illness can be cured immediately if only you could find the right doctor or the right therapy to make it happen now!  That is not reality.  Even in these United States, life is a fatal illness and the natural history of disease still holds sway.  This holds true for all illnesses. 

A personal example exemplifies this principle. 

Someone very close to me developed an enlarged lymph node under her jaw.  She went to her doctor who examined it and told her that while he did not think it was anything dangerous, he wanted to watch it.  He carefully examined and measured it and arranged to see her one month later.  He told her that while it was probably a “reactive” node from some infection that was not apparent, it might be a lymphoma or some other cancer.  Even though that life threatening diagnosis was possible, he was right to follow its natural history and evaluate it by seeing her in a month.  My relative spoke to me every step of the way and I played the role of keeping her patient and calm in order to allow her the maximum benefits of medical care.  At that point in time, the risk of doing anything other than watching the node over time was greater than the possible benefit of a definitive diagnosis.  The doctor took a stepwise, time based approach moving from less invasive testing to more invasive over a six month period, all the time carefully monitoring the node to see if it enlarged or shrunk or changed in any way.  After 6 months of this careful watching and waiting, surgery was done to remove the node with all of its attendant risks which in this case included such dangerous outcomes as facial paralysis.  Thankfully it showed no cancer and the surgery was done without any untoward incident or complications.  The stepwise, time based way in which the care was done was absolutely correct to minimize the risks while maximizing the potential benefits.  The anxiety that it caused was real and my loved one needed support to manage that fear in order to obtain the value of that "best" care approach.  That is the way that medicine should be practiced.  Yet in our immediacy society, it rarely is done in that way. 

Thus in our impatient, immediate world, it is not enough to stop and smell the roses.  When stopping our busy lives to experience the beauty around us is impaired by illness, fear and whatever personal emotional issues overcome us, we need to also stop and work with our health professionals to time our evaluation and treatment in such a way as to acknowledge the progressive basis of care, minimize the risks of evaluation and therapy, and maximize the potential benefits of our interactions.  Only then will we, as patients, really be getting the best care possible.