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. 

Leading, Following, and Good Healthcare Decisions

Healthcare decisions should be made by an autonomous, independent person supported by family, friends and trusted advisors, which should include health professionals.  A person’s health is best driven by decisions that are “owned” by both the patient and the health professional working collaboratively always reflecting the values of the patient using the knowledge and experience of the professional.  While the patient is the final authority, if all those around that patient are merely agreeing with the person, and “following” them as they make bad decisions, without giving them the full benefit of their knowledge and experience that results in poor decision making.  Healthcare decision making should not be driven by an autocratic doctor and should not be patient self-service.  Either end of that spectrum can result in bad, even catastrophic outcomes. 

Two stories illustrate this and both involve potential stupid decision making by an autonomous, perhaps even intelligent, independent person.  That person is me. 

In 2001, I had a right coronary artery angioplasty and stent placement necessitated by an 80% blockage of that artery.  I had some very mild shortness of breath as I ran through airports, which as a   busy physician healthcare consultant, I did quite a bit.  I saw my primary care physician who sent me over to see a cardiologist and the next day, I was having a stress test with an echocardiogram to look for any possible problem.  The result was clear and striking.  My stress test was abnormal and the echo showed decreased wall motion of the heart in one section with exercise, a sure sign that there was a coronary artery blockage.  I had an important meeting in another city the next day so I immediately told the cardiologist that I would have to delay the next step in this process which was the cardiac catheterization and the resultant therapy depending on what was found.  After all, I was smart and the symptoms had been going on for a while so why should I change my schedule for this?  I was leading and thought everyone else should just follow.  Happily I had a cardiologist and a wife who did not accept my leadership and reminded me that the reality of the situation was that the blockage which was clearly present could kill me and I would be better off heading for the cardiac catheterization lab directly rather than fitting it into my work schedule.  They chose not to follow my lead but instead to help me come to a more rational decision.

For those this think this was a momentary aberration in a lifetime of good decisions, an example from last week is useful.  I had to drive a car from Atlanta to Philadelphia.  I like to drive and even a 12 hour drive is something I can do, even on my own, or at least I like to think so.  However I also have herniated discs and have had back surgery in the past.  My back was giving me some pain at this moment and my primary care physician had started me on a short course of steroids for the pain. I decided to drive up anyway.   I thought to myself, “I can make the drive. After all, I have cruise control don’t I?”  That was another potentially stupid decision that could have easily driven me back to the operating room for more back surgery.  The voice of reason was my wife who did not accept my logic and gently told me (or perhaps not so gently) just how stupid I was being.  Instead my 19 year old son drove the car up to Philadelphia for me.  I wanted to lead and I wanted those around me to just follow my directions.  Instead they were smart enough to stop me and protect me from myself.     

I tend, like many, to think myself stronger and less at risk than my 61 year old biology would suggest.  I discount the bad that can happen and focus on the positive.  A country song entitled, “I Ain’t As Good As I Once Was” by Toby Keith has the lyrics, “now my body says you can’t do this boy but my pride says oh yes you can”.  Those lyrics often reflect just how I feel when I try to evaluate my own symptoms and my own healthcare options in making decisions.   Overall that makes for a happy life however it may not make for the best health decisions.  I, like just about everyone, need help and perspective and that involves having people around who you trust and who can lead you as well as follow you. 

Examining feelings and beliefs and helping compare them to reality is often needed and trusted family and professionals can help do just that. That often takes repetition and a bit of courage on the part of the helper.  It is easier just to follow and go along rather than help someone confront the cold hard truth.  In my most recent case of personal stupidity, I asked my son for help after my voice of reality and prospective (in this case it was spurred by my wife’s voice) reminded me that my back would not let me drive 12 hours by myself. 

In my perfect world of healthcare decision making, both patient and health professional would have veto power.  I want my doctor, nurse, and trusted advisors, including my Health Assistant to stop me from doing something stupid.  I want them to help me take action when action is needed.  I don’t want them to passively follow me as I make bad decisions.  I want them to help me choose action when action is needed.  I want all decisions to be mine but I want help, knowledge and perspective to come from those I trust and from those I love when I make those decisions.  I want them to be open and honest and not just to agree with my bad decisions just to be agreeable.    That makes for the best decisions and that takes time, knowledge and trust.  There are no shortcuts and there are no easy ways around the need to confront reality rather than just blindly give orders, as some health professionals would like to do, or blindly follow the lead of the patient as he or she makes bad choices.