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break point, care taker, life's most important question, mortality, right to die, thanks, Uncategorized, value of life

Value of Life and the Infinte Doctor

Grandpa, dad and I walked hand in hand.
Grandpa, dad and I walked hand in hand.

As I have thought about the subject a lot lately, I keep coming back to what seems like a conclusion.  We all wonder how to value life, and most of us swear we have an answer.  As a patient, a father of special needs children, and a patient advocate my conclusion seems simple compared to the many theological based answers I run across.

I think the value of life is determined solely by the desire one has to live it.  I came to this conclusion thinking about what Dr. Weis whom I met with the American Board of Internal Medicine, wrote about two ways to perform the role of a doctor.  The first is as if every visit has a finite interaction duration with a predefined beginning and end.  If the doctor comes into the room, diagnoses the patient and goes about ordering/performing/giving the care which has the highest likelihood of prolonging life, then the doctor has performed the best care possible.  This is measurable/finite doctoring (sort of, if we can agree on the most effective care possible).  The doctor came in, diagnosed the condition necessitating the visit, and treated it.  That is the end of the doctor’s role in a finite model.  I note this is the current model most of our insurance uses to pay for treatments.

The second way to perform the role of a doctor is to look at the patient as a whole.  What do they want to do, and how is their condition preventing this?  Will solving the nominal cause of the visit allow the patient to resume their life as they desire?  What is it that drives them and keeps them going?  What is the patient’s answer to life’s most important question, “For what or whom do you live?” If the doctor can allow them that part of their life which they value, should not that be the goal?  Notice however in this model, the role of the doctor doesn’t end when the patient is treated for the reason they came into the visit.  In this model, the role of the doctor continues for as long as the patient values some part of their existence.  This is the infinite doctor’s role, for it has no defined end point at the time the doctor sees the patient.  It ends with a lack of desire or ability to experience what the patient values in his or her life.

As I have interacted with patients, I find many who have experiences like mine where they overcome expectations because they have something which they value in their lives.  I see patients who spend their time helping others, and the desire to do so gives them fortitude beyond what should be expected.  I see kids who want desperately to play with their family, and that gives them strength to push on long after they should have needed to stop.  If we take the time to know what we or the patients really want out of this life, I suspect we may go down very different roads than the road of trying to preserve life for as long as possible.

I note treatment under these two models can have some profoundly different outcomes.  Now think about under which model of a doctor’s role you want to be cared?

This came to a head for me last month.  My dad had been in the surgical intensive care unit for months.  It became clear he was never going to be able to get back to the parts of life he loved.  He wasn’t going to be able to go out boating and drinking with friends at the marina.  He wasn’t even likely to be able to go read a book by the water for a long time, even if things went optimally.  Yet through infection after infection and surgery after surgery he held on.  Why?  I strongly suspect he persevered because he never wanted to leave my step-mom alone.  He loved her the way we all hope to be loved.

Still, on a Friday after months in the hospital she told him it was OK to let go, and what he wanted became clear before she even left the building.  If life’s most important question is “For what do you live?” clearly his love and concern for her was his answer.  He tore off the oxygen before she even got to her car.  They put it back on him, but through the weekend it became clear he was done.  He died on the Monday after family said our good byes and stopped all medication save those comforting him.  He valued knowing his wife was OK enough to endure whatever came his way, and when reassured she was, his decision was life was not worth the discomfort. He was lucky enough to be treated at a  hospital where the ultimate goals of maintaining and preserving life meant more than a heartbeat.

I don’t doubt for a second the entire team of medical professionals at the University of Maryland Medical Center worked to preserve a chance for him and our family to return to a life with meaning.  What’s more, when that chance passed, they respected the wishes of our family to let him go and not insist on medical treatment unlikely to add value to his or our lives.  For them, I am thankful.

For my dad, we will all miss your self deprecating humor. With your passing, we will miss thousands of smiles, Hawaiian shirt sightings, deep conversations and opportunities to enjoy great food and drink. May you forever travel happy knowing you are loved.

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application of logic, complex systems, healthcare information, patient centered healthcare, Uncategorized

Death of Expertise and the Birth of Alternative Facts

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O's fact: "This is a cool pig's head." A's alternative fact: "This is disgusting!" My fact: "Looks like the pig is done, and we are eating well tonight!"
O’s fact: “This is a cool pig’s head.”
A’s alternative fact: “This is disgusting!”
My fact: “Looks like the pig is done, and we are eating well tonight!”

I was recently pointed to an essay on the perception that our country faces a “Death of Expertise.”. The scary part is the article was written in 2014. As we now seem to live in a world of facts and alternate facts, I am becoming more and more aware how limited our perceptions are when it comes to our ability to discern actual reality. The lines blur, and worse the titles we use to convey a sense of expertise are often cheapened by those who benefit from “alternative facts.”

As a patient advisor to the American Board of Internal Medicine, I find this article on the Death of Expertise relevant as we begin to embrace patient centered care. We are looking at the impacts of the patient becoming a partner in their healthcare rather than a subject upon whom the art of medicine is employed to better their health. It’s interesting to me because I find myself frequently commenting to the doctors there is no way most patients know enough to really understand the impacts of a treatment on their health as a whole. We know what we experience, and we tend to assume what did not happen could/would never have happened to us. Many have little or no understanding of likelihoods, especially rare ones. Our minds are not primed to understand such information. As a result, preventative care can be a very hard sell, and it takes only a little bit of fear mongering to send us down an anti-vaccination route.

Of course, our body is a complex system (note: different from a complicated system that it also is). We are still learning the down stream implications of many of the things we do to and with our bodies. I recently gave a presentation to doctors, insurers, regulators and patients on patient generated data and how we can use it. It is “big data,” a term very few understand. Big data is simply data collected from many sources, collected for different purposes and then used as if one data set. We can use it to assert a position or confirm a position, and we are already doing both. We are just in the infancy of understanding how best to use the huge trove of information, and one of the challenges is pulling in most uninformed perspectives into something useful.

The ability to gleam and present such insights is where I predict the next generation of experts will arrive. The best of them will be able to sift out the trash to present and stay current with the overall trends. The hard part is recognizing the limits of our knowledge. The Dunning-Kruger effect is real, and ironically one mentioned at the last board meeting. When it comes to medicine, we have the added frustration coming from double complex system issues around both the complex system that is our health and the overlapping yet distinctly separate complex system that is our emotions about our health and healthcare.

Still, we are coming a long way at a fast pace. As our traditional study based medicine is either directed or confirmed by huge amounts of data, our knowledge is refined faster than ever. Heck at the last meeting, the doctors were talking about the study in Stroke showing an increase in strokes and dementia for people who drink one or more diet soda a day. It was mind breaking to them, and they were shocked by my only mild surprise. I told them I stopped drinking coke zero because my headaches were worse, and when I switched back to regular coke I looked at other patients’ info. I was far from alone across neurological conditions to note worsening symptoms on diet sodas. As a result, I was less surprised than they at a link between diet sodas and neurological issues. My knowledge was not based on a formal study, and I would never present it as fact. However, a smarter person could have made the connection and presented a decent level of proof from expanding the small amount of research I did, and they could present something I would believe as much as my doctor telling me. However, I need the doctor to tell me which of the millions of “facts” and “alternative facts” available to me are most likely to help me feel better and live the life I want to live better. Alas, I do not have the base to make such distinctions well.

That is why I need a doctor. What’s more, that is why I need the term doctor to convey a level of current expertise. It is why I endorse the idea of a body of “experts” who can set a minimum bar to be called an expert in their field. Note that is what the American Board of Internal Medicine is. It is a group of doctors (experts) who say to be accredited with them, a doctor must know X.

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