Another systemic failure of care and about whether anyone cared at all

Sometimes it’s easier to blame the patient than it is to blame the medical system, and so that’s what people often do. But if one is going to blame the patient, then one really ought to have data to back it up.

In a recent article on the Medscape web site, Mulcahy writes as follows:

In ‘real world’ practice,  men with prostate cancer are walking away from active surveillance at much higher rates compared with what is seen in prospective trials at academic centers.

However, the problem is that the study itself (by Kraus et al., see abstract no. 53 at last week’s Genitourinary Cancers Symposium in Orlando, FL) doesn’t necessarily show any such thing. What it shows is that about 50 percent of men initiated on active surveillance at Los Angeles County Hospital (a large public ‘”safety net” institution) were lost to follow-up over a 2-period, as were 20 percent of patients initiated on active surveillance at the affiliated and nearby Norris Cancer Center over the same time period. The two share many of the same physicians.

Now rather than assume that the patients all “walked away from” active surveillance at these two institutions, let’s see if we can come up with a rather more comprehensive set of possible reasons for the loss of the patients to follow-up:

  • Men are “poor” patients (i.e., they inherently come with a high likelihood of not complying with the care suggested).
  • The men did not feel well cared for (or sufficiently cared about?) at the institutions in question (so they went somewhere else for their care).
  • The men (mainly poor and working class at Los Angeles County Hospital) couldn’t afford to return for follow-up care.
  • The two institutions failed to ensure implementation of comprehensive follow-up care systems that would have encouraged patients to return for their follow-up care.
  • Several or all of the above.

Let’s be honest. Men are not as good as women, in general, at complying with healthcare recommendations. But our healthcare systems aren’t set up to make it easy for patients to comply with care requirements … and nor is our social culture. Taking 2 hours out of the work day to go to an appointment at an institution like LACH might easily end up being 3 hours. That could lead to a man losing his job.

We have absolutely no idea what any of these men actually did when they failed to return to the two institutions for follow-up care, but it’s a reasonably safe bet that most of them did do “something”. They had still been told they had cancer, after all.

Worse still, to suggest that an institution like the Norris Cancer Center is so unable to sufficiently inform and educate it’s patients that 20 percent of them simply “walked away from” care (of any type) at such an institution is surely not something that the Norris Cancer Center is going to want to wear with pride. The Norris Cancer Center is an academic, tertiary care institution. Why would they want to plead that they simply couldn’t accomplish the same level of patient satisfaction as Sunnybrook in Toronto, or Johns Hopkins in Baltimore, or (worst of all) UCSF some 400 miles further north in San Francisco.

What we see here is a systems failure that combines a willingness to see patients “walk away” with no interest in understanding why. This allows the convenient fiction that the patients’ willingness to walk away has nothing to do with the institutions they walked away from and everything to do with the fickleness of the patients. It doesn’t take a Watson-type brain to be able to see the flaw in that particular way of thinking.

The reasons that patients may decide to take their “business” (or at least their bodies) to another institution may be bizarre and complex or simple and straightforward, but there are always reasons — and when healthcare institutions demonstrate no interest in understanding those reasons, then they have no reasonable justification for stating that patients are simply “walking away” from any particular type of care — whether it is a simple biopsy or a long-term plan for active surveillance.

To go the further step, which the authors do, and then question whether “active surveillance should remain a recommended course of treatment” for poor men who had the high drop-out rates exhibited at the Los Angeles Central Hospital shows what your sitemaster would consider to be a crass disregard for exactly why the dropout rate at this institution may have been as high as it apparently has been. The stated reason, that “in the real world” physicians simply aren’t well enough incented is not the patients’ problem. That’s a problem of institutional mindset and individual physician perspective. A single, competent, volunteer patient navigator might have been able to solve that particular problem.

3 Responses

  1. One solution that I found helps is support groups. Even a monthly meeting with guys who “get it” provides the encouragement to stick with the program.

  2. A-f**ing-men!

  3. Mike, I don’t tell you enough how much I respect what you are doing here!

    Stan (Rosenfeld)

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