Time is an intriguing concept. On a high level, we all understand time. It is that clock on the wall in our office that does not move when we are hungry or are unbelievably tired from the day’s labors and want to start the weekend. Old people, music, and poetry all tell us to enjoy our life now because in a blink of an eye time runs out on our lives. Buddhists spend a large part of their life learning how to live in the moment, a time management approach to life. Life would not be possible without time. Time is life; it’s a continuous movement regardless of our intentions or desires. Without time, there would be no stories.
Time, within the confines of healthcare, gets slightly more complicated. For example, a patient might consider an Ankylosing Spondylitis (AS) diagnosis both the best and worst day of their lives. On the one hand, finally receiving a diagnosis can provide relief and validation for a patient. They might have had to fight for respect and attention from the medical system for years before receiving this diagnosis. However, now knowing that they have an incurable disease that causes the body to attack the spine can be incredibly depressing. The amount of work alone just to cope with this disease can be overwhelming for many. By saying 4 words, “you have Ankylosing Spondylitis”, a rheumatologist has just completely altered their patients concept of time. This goes for all chronic illness or diseases. Suddenly, time takes on a greater priority in our lives because we just lost a large chunk of it to our health.
Ankylosing Spondylitis falls into the chronic category. As such, a large chunk of any patient’s life with this invisible disease is going to be spent in a doctor’s office. For the sake of simplicity, lets say that the average wait for this patient is 30 minutes after their scheduled appointment time. If we take the time concept of a day, 30 minutes is only 2% of a day. That’s nothing in the space of time. However, in a 30-minute time frame, that same patient can reply in their head the phrase “you have Ankylosing Spondylitis” 360 times (assuming it takes 5 seconds to repeat that diagnosis) before seeing the doctor. Even the toughest of patients would have a difficult time staying mentally positive while their mind replays the diagnosis over and over again. Now imagine if the diagnosis was something with a higher mortality rate than AS like Cancer or Cystic Fibrosis (CF). All of a sudden, that 2% of the AS or CF patients day becomes incredibly important to that visit and our overall quality of life.
Let’s take a look at the medication Methotrexate that an AS patient will probably take at some point in their patient story. Methotrexate is a low dose chemotherapy drug that comes in pill and injection form. Most patients, regardless of which method they take, experience some form of a meth hangover each week after taking this medication. Again, for the sake of simplicity, lets say that this patient experiences hangover symptoms for 48 hours each week. Symptoms can include severe nausea, headaches, and dehydration just to name a few. This works out to 28.57% of this patient’s week is lost to methotrexate. Another way of thinking about this is that this chronic patient only has 71.43% of time each week that a health person does to work, play, work out, travel, love, or be a friend to someone in need. Most chronic patients have more than one medication that they have to take on a regular basis too.
Without time, there would be no patient stories. Unfortunately, even one medication can limit time for a patient despite time being a fluid concept. I’m still working on the high level fix that our healthcare system needs in order to completely transfer from yesterday’s paternalism to today’s patient centered models. However, I am sure that including time in a patient’s care discussion is something that can be implemented now without needing a Presidential decree or new law from Congress. Time is a finite resource; lets make sure to use it for love and travel, not healthcare paperwork or medication hangovers if all possible.