Progression of Illness: When It’s Not What You Thought It Was

Since I’ve started this digital gig, I’ve had the opportunity to read a lot of healthcare patient feedback: reviews of doctors, physician assistants, and nurse practitioners, commentary on urgent care offices and hospitals, and opinions on nurses and reception staff. Lots of people report on things like cleanliness of surroundings and wait times and throughput. There are a fair number of comments about staff attitudes and “tone.” But I’m not going to talk about those aspects in particular today. Believe it or not, many of those topics I’ve just named are fairly straightforward to address: people can be given feedback to pay more attention to their behavior and to improve communication skills, and the facilities issues are mostly easily rectified. Billing disputes are typically solved after varying degrees of investigation.

I also read occasional comments about “missed diagnoses” in the acute care setting.

Every now and again I’ll read a frustrated review from someone who sought medical care one day and was given a diagnosis, only to obtain a different one the next from another physician. Or an upset parent who got the news that his child had an ear infection a day after they were seen elsewhere and told that the ears looked clear. These situations require a more complex dissection, and each and every one of them must be reviewed and analyzed in detail to search for any discrepancy of standard of medical care. And they do happen, as we all know. Medicine is far from perfect. I’m sure that the term frustration doesn’t even BEGIN to describe how this must feel on the patient/family side of things. I can vouch for this personally.

What I DO want to highlight in these few paragraphs is the concept of “progression of illness”

and how that causes a lot of tough breaks and is at the heart of many negative reviews and bad feelings about various healthcare encounters, though I’m not sure it should be. I know it sounds obvious to state that “things change,” but clinical scenarios do. Diseases evolve, big and small. It’s really true that on a Tuesday night a child’s ears could look clear as day and by Wednesday they are red and fluid-filled. Or that the lungs sound great on Friday but by Sunday morning there’s an audible pneumonia. So progression of illness is the term we use when a disease takes its typical course. Kind of like a timeline. And on that timeline there’s an early, middle and late phase. The hard part about snapshot diagnostics, when clinicians only see patients once and briefly at that, is that if you catch someone on the early phase of a disease timeline, there’s a chance that an accurate diagnosis will be missed. Thankfully this doesn’t happen all that often.

There are several reasons to be careful about pulling the definitive diagnostic trigger too soon in the early phase of an illness.

For example, in the case of possible infection, incorrectly calling it “bacterial” and thus prescribing antibiotics too early can actually do more harm than good if the infection turns out to be a simple self-resolving virus. It won’t help a person get better any quicker, can potentially have some unpleasant side effects, and fosters the growth of antibiotic resistant superbugs. A little bit of “expectant observation” often allows for better accuracy, even if it means taking time out of busy schedules for another healthcare check. I understand the potential financial impact of this, which must be weighed into the equation, but I still stand behind the belief that doing the right thing medically should take precedence.

Another example is the decision whether or not to give intravenous (IV) fluids to a child with the stomach flu. Nearly everyone who gets the stomach flu has some degree of dehydration, and I’ve seen situations where an IV is expected yet not necessarily indicated. Dehydration is a spectrum, and it’s nearly always better to use the stomach to rehydrate if at all possible, meaning to hydrate by drinking in frequent small sips or sucking on an ice cube. This can be slower and often takes more work than rapidly infusing some saline into someone’s veins, but in the end it avoids a needle-stick and helps keep the intestines at work. The tricky part in this scenario is being able to guarantee that a person will be successful at rehydrating by mouth: it’s impossible to predict. Sometimes that queasy feeling subsides sooner rather than later and tolerating fluids goes better, but sometimes not. Regardless of direction, there has been progression of illness, and as a result of that progression, a different therapeutic direction may need to be taken. No one’s fault, it just is.

I bring up the topic of progression of illness today because it’s what I ask myself every time I read a review or post or commentary or survey response that includes details about a delayed or missed diagnosis. “Could this have been simply part of the progression of illness?” is a worthwhile question, and I hope by bringing it up today it’s a question that you’ll ask too as you come across reviews and posts in the digital space.

What can YOU do?

1. Ask your provider the question about progression of illness. Know what to expect in general, recognizing that every situation is slightly different.
2. Establish a plan of action at your first medical visit for what to do if things seem to be worsening. Are there specific signs to watch out for?
3. Know what else your clinician is thinking about in regards to your specific case. What other diagnoses are on the list? How will the determination be made, and does it matter (i.e. will it affect treatment)?
4. Don’t be afraid to call your provider if you have questions after your visit. He/she may tell you to come back in for evaluation or may be able to direct you right at home. Speaking from experience, we always want to help to provide the best care possible.

I’m not trying to make excuses for medical care that doesn’t measure up, or make light of the fact that it is often difficult, usually time-intensive, and frequently expensive to have more than one medical visit for an acute issue, but what I am trying to say is that progression of illness is always at play and sometimes the clinical care dictates some step by step management with observation and evolution in between. Being mindful of this amidst the plethora of commentary by understandably stressed and concerned people when considering various healthcare environments is important in the spirit of fostering the most positive clinician-patient relationships possible.

And THAT, I know, is good for everyone’s health.