An Appalling Outcome that YOU Can Change

A sad story sets the stage for today’s advice. 

I was walking my dog last week on a beautiful newly-spring day. It was good to see and wave to neighbors who had hidden themselves away for the cold and stormy winter. Some were cleaning up gardens, others sitting on front porches….

And that’s where I found Russell (not his real name) – sitting on his front porch. I hadn’t seen him for months, but there he was… but, um, not really looking like the Russell I had last seen; thinner and grayer….

We walked over to say hello, and as I got closer I realized he really did not look well. I told him it was good to see him after all these months, and asked how he is doing – you know the drill. 

And then, the huge and horrible surprise: Russell said he has been diagnosed with Stage 4 liver cancer, and that it has already metastasized to his lungs. OMG.

Turns out, that wasn’t the most disturbing part. The most disturbing part of the story is that through MISTAKES, through a MISSED PROTOCOL, his diagnosis was missed over a year ago, at a time it could have been caught at a very early stage, and possibly stopped in its tracks.

How was that diagnosis missed?

Because no one checked his medical test results.

It seems that Russell had experienced some concerning symptoms over a year ago. So he visited his primary, was sent for lab tests, and – never heard anything back from his primary. 

Then he made the fatal mistake too many people make – that is – he assumed that no news was good news, and (relieved) went on with life. 

In his 70s, Russell isn’t the guy who camps on his electronic record. (Now he realizes what a mistake that was, and he said he checks in almost every day.)

As you might guess, it turned out – in retrospect – that the results that indicated the possibility of liver cancer were right there, in those year-old results, dug up just a few weeks ago. Had the doctor reviewed them, and followed up with him, had Russell accessed the records and asked questions, had ANYONE involved been on top of those results – Russell’s status today would be VERY different.

Russell’s missed medical test results review is possibly, probably, a death sentence.

The lesson is clear, and is a teachable moment; one YOU can implement, and teach to YOUR clients.

That is – anytime there are medical tests for any aspect of your clients’ health, make sure there is the proper follow-up, beginning with accessing and reviewing the results and then developing questions for providers.

NEVER assume that no news is good news! 

Medical practices make mistakes every day. Information gets missed, notifications get dropped….

Electronic records are one of the good-news, bad-news aspects of healthcare today. That is, they are good news because we patients can get quicker answers. They are bad news because providers get them the same way we do – electronically – and if they have a busy day and don’t take the time to check results…  Well…. look at Russell. 

If each party (patient and provider) thinks the other will check them – where is the accountability? 

How can you, the patient’s advocate, use this lesson?

• Make it clear to your client that as part of the team, you would like access to your patient’s electronic records.
• Each time your client has medical tests (blood work, other lab tests, imaging, other procedures) make sure you – WITH your client – access and review the results. 
• If the results are good or clean (in medical terms, they are usually good if they are “negative” although that’s not always true), work with your client to create follow-up questions about what has been learned from those results and should also be reviewed in the future. (Examples: is this outcome 100%? or is there a history of false negatives? or will we need to do this test again?)

If the results are problematic, of course, there will be many more questions, possibly other specialists to see, and so forth. There will be a whole new trajectory for your client, and this will be the opportunity to show them how important your role as a major support can be – including the very close and constant review of the client’s records, including test results.

Russell is now in the midst of regular chemo infusions, has had a couple of procedures, and is also dealing with the lung metastases. It’s very possible this would be unnecessary if his doctor, or he, had checked the results of his lab tests last year. It’s not a question of blame, even though it COULD be. But blame doesn’t improve today’s situation. 

So – we take away what we can learn; for ourselves and our clients.

Every medical test needs this follow up. Every single one. Be your client’s hero and teach them how to do this for themselves, as you hold their hands through your work together.