No Note About Patient Refusal of Test Before Missed Cancer

In this case, a delay in following a patient’s right kidney mass was complicated by the providers’ incomplete and conflicting documentation of patient education and recommendations for additional testing.

A 55-year-old woman with an unknown medical history presented to an outpatient clinic for a routine visit. She was evaluated by a physician assistant, who documented both “no complaints” and “upper abdominal pain” in the diagnostic section of the note. The PA ordered labs, an electrocardiogram (EKG), a cervical screening, and an abdominal ultrasound.

The labs showed anemia, and the EKG and cervical screening were normal. The ultrasound revealed a 7 cm right kidney mass, and a CT scan was ordered. The patient was notified about the importance and urgency of scheduling the CT scan. However, the patient declined because of the cost. The patient’s refusal to complete a scan was not documented in the medical record, and no further follow-up occurred.

Ten months later, the patient returned to the clinic with complaints of dysuria and excessive thirst. A different physician assistant evaluated the patient and stated he discussed the prior ultrasound results and the need for a CT scan, but he did not document the conversation. Labs were completed, which confirmed non-insulin-dependent diabetes mellitus, and the patient was started on oral antidiabetics.

One year later, the patient presented to the Emergency Department with complaints of abdominal pain, blurred vision, and dysuria. On examination, the patient had a palpable right kidney mass. A CT scan and biopsy were performed, which confirmed Stage 4 renal cell cancer.

Due to extensive carcinomatosis, the patient had a poor prognosis with no treatment options. She was admitted to the intensive care unit and recommended for hospice, and died one month later.

The patient’s family claimed that the providers failed to inform the patient of the right kidney mass found on ultrasound or the urgency of having a CT scan. The case was settled in the low range.

To discuss the patient safety and risk management aspects of this case, we are joined now by Dr. Jonathan Einbinder. Dr.  Einbinder is Vice President of Advanced Data Analytics and Coding at CRICO, and is also an attending physician at Brigham and Women’s Hospital.

CRICO: Jonathan, thank you for joining us.

Dr. Einbinder: Glad to be here, Tom

CRICO: Communication and documentation, they are sort of the headlines for the contributing factors in this lawsuit. So when you listen to the details in the case, what starts to come to mind.

Dr. Einbinder: When I read through this case, the first thing that comes to mind is that this is a patient that needed help and didn’t get it. And that feels very, very sad and very unfortunate. So somebody who needed help needed to be taken care of and wasn’t.

The other thing that jumps out at me is the failure to document what was going on, and that that failure of documentation, ultimately, is what led to the case, the actual legal claim  resolving with indemnity payment.

CRICO. And we were even talking earlier that there is a lack of detail somewhat in the file. And there’s a lot of conversation and information and things that needed to be there that there weren’t.

Dr. Einbinder. Yes. And, there definitely were things that there’s a lot of opportunity to project into the case a series of events and personalities and what might be going on. And one of the things that really stuck out to me or that I got myself thinking, was that this person, a 55-year-old woman, presented for what was described as routine care. And they saw a P.A. So somebody who presents for routine care sees a P.A., presumably not their primary care provider, gets a bunch of tests. I’m imagining or projecting that this is somebody who may not have a PCP, may not have a strong relationship with the practice, and might have been getting more episodic care from a variety of providers.

And that was the entry point into this case. There was then, of course, actually, from the description, a fairly complete workup done. There was lab work and electrocardiogram, and an ultrasound performed. The lab work showed anemia, the ultrasound showed a renal mass, and then we’re kind of off to the races in the case from there.

The other thing that stuck out to me in this case, the very initial visit, there were two abnormal findings that were described, and one was the kidney mass. The other was anemia. And anemia is not normal in a 55-year-old woman. And the idea that you would again go ten months, a year, or more before doing any additional workup for that finding, so, for example, the patient didn’t get a colonoscopy or an endoscopy or even simply repeat blood work. So I think every abnormal test does require investigation, documentation, and closing the loop on the test.

CRICO: There were multiple visits and multiple providers. What role do you think, coordination of care may have played in this?

Dr. Einbinder: I think coordination of care is a very big factor in this case. The care seems to be fragmented. The patient saw two different PAs about a year apart for those two initial visits and then had a subsequent visit in the emergency department. Again, not clear if there is a supervising physician, if there’s an ongoing relationship with a primary care physician or primary care provider. So there’s fragmentation at that level, and there may not be that established relationship and trust.

There’s also long gaps, that are included in this case. So from initial presentation, detection of the seven centimeter kidney mass. And I think it was almost 10 months before the patient returned for care. And then about a year after that, before they returned in extremis and with the ultimate, terminal diagnosis of metastatic cancer.

So, infrequent care, multiple providers, a lot of fragmentation, probably not a lot of coordination.

And I guess the other word that jumps out to me when I think about this patient’s care is that it was very reactive. The care team was reacting to the patient presenting with an acute complaint, and not much was happening in between. Didn’t seem like there was a lot of preventive care going on, a lot of outreach, a lot of follow up. Again, maybe there was and it just wasn’t described in the case study. But from the facts, I am imagining that there wasn’t.

CRICO: Sort of handing off responsibility for follow-up, really just to the patient. And we know that that isn’t very reliable. We want to prevent the bad outcomes and be proactive. What do we recommend when this kind of pattern emerges in patient care in a practice?

Dr. Einbinder: It’s very, very challenging when a patient needs follow up in the opinion of the of the care team, but they’re not getting it, not willing to get it, refuses to get it, whatever the case may be. What to do in that situation to kind of pick up things that are falling through the cracks to prevent this kind of situation from happening? I think one thing is that there could be and probably should be more supports within the team.

So if an individual provider is, for example, as has happens in this case, the patient has a mass, a CAT scan is recommended, the patient declines to get the CAT scan. The burden of dealing with that shouldn’t fall completely on the provider who’s ordering the test or trying to order the test. It could be that, again, a primary care provider might get involved. Other colleagues might talk with the patient. Perhaps a social worker could explore some of the financial aspects or ways to get the tests done. Maybe specialists could be involved in terms of explaining why this is important. But alternative pathways and alternative methods of communication could be pursued.

CRICO: Even if the communication happened and it was poorly documented, what can be done about the communication itself to make it more likely that the patient’s going to follow through on recommended tests, and just help save their lives?

Dr. Einbinder: So the way to get a patient to be more likely to follow through on recommended tests, even if they are expensive or unaffordable, even if they’re potentially uncomfortable or scary or unpleasant…that’s a very hard, very hard thing to do and it really does come down to maintaining the dialog with the patient.

Probably more than anything, it’s listening. So it’s listening to what their concerns are. It’s listening to what they have to say. It does not really involve trying to scare them into it or guilt them into it or shame them into it. You know, ’you have to do this or you could die.’ [CRICO: That doesn’t work.] That is, not an effective strategy for getting somebody to do something. And it also means being open to the fact that they may not do it. They may not do what you want them to do.

You can find alternative strategies. You might want the patient to get the CAT scan, but if they won’t get the CAT scan, maybe they can get a repeat ultrasound in two months. Something like that. And maybe that would be helpful. Not as good, but better than nothing.

And then finally we did talk about patients will refuse. That documentation of the discussions and of the refusal and the reasons, all of that is and the plan going forward is critical. If you don’t document and it doesn’t happen and bad things happen? Not a lot you can do after the fact other than do the best you can from that point going forward. Involve Risk Management.

So, I guess in summary, I would say it’s a combination of it takes a village or use a team of people to engage the patient, maintain frequent contact, and then finally, if all else fails to protect ourselves as providers in case there should be an adverse outcome and perhaps legal action taken, documentation is essential. So you have to document what’s going on and even involve risk management if you need to. So most practices or hospitals certainly have risk managers that can that one can reach out to in this kind of situation to find out what you should be doing or how you could be handling this from a risk management perspective.

CRICO: Thank you again, for this conversation and your wisdom. Jonathan Einbinder is Vice President for Advanced Data Analytics and Coding at CRICO, and an attending physician at Brigham and Women’s Hospital.

I’m Tom Augello for Medmal Insider.