Vagueness in medical practice

I have come to realize I operate in a professional world which cultivates vagueness. This needs to be distinguished from uncertainty which can co-exist with vagueness. Vagueness can be used as a smokescreen when one is trying to prevent others from realizing the existence of uncertainty. Vagueness is the ally of those who leverage worlds of uncertainty to create business opportunities. If I go to my local Jiffy Lube, I know the offerings and I know what to ask for. They are posted behind the desk where I enter. If I have a car that is has a flat tire, I know to ask whether it is repairable and make the decision as to whether it is worth it. If I need the oil changed based upon miles or time criteria. If I go to my lawyer, my accountant, or financial professional,  I have a specific goal in mind. If I do not articulate this, they are very much inclined to do their best to extract this information from me before proceeding. I probably would not even set up a meeting unless I knew the specific deliverables I had in mind were something offered by those particular agents.

When it comes to medical deliverables, things often get vague. I came across the following story written in a column by the NYT health reporter Tara Parker-Pope which illustrates this well. She recounts an unhappy series of encounters with the health care delivery system relating to her daughter's ankle sprain.  (http://well.blogs.nytimes.com/2012/07/25/too-much-medical-care/?smid=tw-share)  She describes that after her daughter sprained her ankle, they embarked upon a six month ordeal attempting to address her daughter's painful ankle. After growing impatient with the pediatrician's wait and see attitude, they saw a series of specialists, each doing a cursory exam, ordering lab and imaging studies. After five months they appeared to be getting nowhere. She wrote:

After years of reporting on health, I considered myself a well-informed patient, but it took my elementary-school daughter to state the obvious: She was the victim of too much medicine. Every new blood test, scan or X-ray raised new questions, which led to more lab work, scans and X-rays. I know the doctors had good intentions, but it’s a truism of modern medicine that the more you test and scan and look for problems, the more likely you are to find something wrong. My daughter’s case had spiraled out of control.

I canceled all her appointments with the various specialists, and went back to the sports doctor. We discussed a new approach that focused solely on pain relief. He consulted with my daughter’s pediatrician, and they agreed on a treatment. Within days, my daughter’s ankle had stopped throbbing, and soon she was back to sports and dancing. 

While this reporter had years of experience in the health care realm and considered herself a well informed patient, she appears to have missed the obvious. What were her goals in taking her daughter to the doctor in the first place? What particular service was she expecting to receive and what deliverables did she anticipate to have delivered? Ultimately, they focused on pain relief and the problem resolved. I have to wonder what were they focusing on prior to that?

While I am not a fan of the PPACA, I think the PCORI element has gotten the patient empowerment conceptually right. If every patient approached their encounters with the health care industry based upon these principles, it would help avoid such stories as described in Mrs. Parker-Pope.

Patient-Centered Outcomes Research (PCOR) helps people and their caregivers communicate and make informed health care decisions, allowing their voices to be heard in assessing the value of health care options. This research answers patient-centered questions such as:

1. “Given my personal characteristics, conditions and preferences, what should I expect will happen to me?”
2. “What are my options and what are the potential benefits and harms of those options?”
3. “What can I do to improve the outcomes that are most important to me?”
4.  “How can clinicians and the care delivery systems they work in help me make the best decisions about my health and healthcare?”

I operate in this environment and I can envision much of what went on. In all likelihood all of this could have been avoided if she could have been  supplied with the relevant information and uncertainties immediately after the ankle injury. How long will this take to resolve?  How long should we wait to do any further evaluation?  Is six months a long time for resolution of an ankle sprain in a teen age girl? This answers would be vague for all these questions. That is because we generally do not track such things. The uncertainty of time course should have been clearly stated up front. Who knows, it might have been addressed by her pediatrician. My guess (and it is simply speculation based upon how things work in my world) is that time constraints limited discussions in the office. The ankle injury prompted an urgent call to the pediatrician. They were overbooked into a full clinic. Whoever saw was probably in a hurry, running behind and everyone (doctor, mother, and patient) wanted to get things over with. Whether they were instructed to do the basics, ice, rest, NSAIDS and did that religiously is unclear. Perhaps what they needed most were the tools to deal with their own impatience. The author did note that:

The cost of this ankle injury had reached well into the thousands of dollars — I had lost track because it was all covered by my insurance.

How illuminating. Insulating patients for financial impact tends to make them less reflective about their decision.  When the tests were ordered during the specialist visits, were the ordering physicians queried as the potential benefits and harms and the likelihoods benefits of each study, particularly the third MRI? What on earth were they looking for, particularly when they were assuming that whatever it is was it was missed by the previous evaluations? What were the anticipated deliverables from these specific  tests and how would that have changed treatment? In an ideal world and equipped with the right questions and expectations,  they would have ended up in the same place with fewer tests and visits. Perhaps if they required investment fo their own resources they would be more inclined to think about the PCORI questions.

At some point the patient deliverables diverged from the physician deliverables. Visits to the rheumatologist and ophthalmologist clearly indicated that the their interests had moved away from the painful ankle, suspecting some sort of systemic problem extending beyond the ankle sprain. Perhaps reasonable enough but placed within this context, it behooves the patient (or her mother) to ask the simple question, "How likely is that to be the case?". We are not talking about exact numbers here but decisions to embark on such diagnostic wild goose chases should be supported by knowing whether likelihoods are in the ranges of 1:100 or 1:100 million. In the mean time what are we to do about the ankle which is still painful.

Ultimately, the road to daylight needs to be patient driven. For patients, have a plan in mind when you come to see us. We will make up our own deliverables if you do not articulate them to us first. Are you coming to medical provider because you have an immediate and symptomatic problem (short of breath, pain, inability to function as normal) or are you coming to be reassured that you will be OK in the future? Vague requests tend to prompt vague courses of action. If you are clear about your agenda, be suspicious when your doctor changes it to a different agenda.

Don't settle for just a diagnosis. Ask what this means for you. A diagnosis is simply a prediction. Ask for what that prediction is and the likelihood of specific outcomes. Be aggressive when inquiring as why specific decisions are recommended. Ask for specific numbers and don't settle for terms such as common or rare. They are vague terms. They may mean something to your physician and something entirely different to you. In the same vein, while rejecting vague terms, be prepare to accept uncertainty and admission that we do not know.