When patient advocacy leads to patient enabling

Physicians, nurse practitioners, nurses, psychologists, physical therapists, and a whole host of other health care professionals entered their respective professions to help people. One part of being an effective health care provider is to advocate for your patient when they need it. For example, if your patient (who is a mechanic) broke his arm and needs a note for the employer for a few weeks off, you provide it. If your pediatric patient (who suffered a severe traumatic brain injury) needs you to write a note regarding academic accommodations, your write it. If your stroke patient needs you to write a letter of medical necessity to the insurance company for why they need extra physical therapy for rehabilitation of a weak limb, you write that too. This is just common sense and while it can be seen as advocacy it is also sound practice.

Where patient advocacy starts to become problematic and can lead into patient enabling, is when there is: a) a lack of objective biomarkers to indicate the presence of a pathological physical condition and/or b) the patient is pursuing some form of compensation (e.g., disability application, workers compensation claim, no-fault insurance claim, and/or litigation). By objective biomarkers, this means that there are no significant abnormalities on blood tests, x-rays, MRI scans, physical exam, or other objective measures. When a and b are both present, the risk of patient enabling increases significantly.

In such cases, the health care provider is often left to diagnose, treat, and manage the patient based purely on subjective symptoms. The provider may also be asked to fill out disability paperwork (even on the first visit), fight insurance company denials for expensive tests, and be asked to refill pain medication prescriptions. While it may be easier to go along with these requests, if you are a healthcare provider how do you know that the patient is not exaggerating their presentation, that you are actually treating the true source of the problem, that you are not causing more harm than good in the process, that you are not enabling abnormal illness behavior, and that you are not enabling someone’s financial goals as opposed to medical treatment goals?

This is a topic that rarely commented on in clinical notes or discussed with the patient. There are several reasons why this is the case, including but not limited to: a) an automatic proclivity among some providers to believe subjective symptom reporting is accurate based on a belief in the inherent truthfulness of others, b) a belief that reinforcing and “validating” symptoms helps the patient feel like someone cares and is thus more important than questioning if the symptoms are accurate, c) helping patients is equated to prescribing and ordering diagnostic tests targeted to each specific symptom, d) not realizing that the presentation may be exaggerated by failing to integrate evidence-based research findings into case conceptualization, e) not utilizing objective measures of treatment progress (or lack thereof), f) fear of complaints and litigation, g) it takes too much time to address, and h) not realizing that there are ways to more objectively and comprehensively evaluate exaggeration.

As a caveat to this discussion, I want to be clear that there are patients with only subjective symptoms who may have a genuine medical problem that objective tests did not detect. A famous quote about this drives the point home “absence of evidence is not evidence of absence.” To be more accurate, however, the phrase should read, “absence of evidence is not always evidence of absence.” This is because many times a medical test is negative because there really is nothing medically wrong. In other words, many times, “absence of evidence actually is evidence of absence.”

This post should not be read to imply that patients with subjective symptoms, negative objective test results, and who are pursuing compensation should not be treated and advocated for. These types of decisions will always depend on the specifics of the particular case. However, in general, health care providers need to exercise much greater caution in such cases than in the ones described in the first paragraph.

A few tips are as follows.

  1. Use objective measures of treatment progress and require/request this of others who you refer the patient to for treatment. If the patient is not improving with a certain plan of care, it is time to change direction rather than continuing the same treatment for months to years. You may be surprised to find when doing this that the patient is actually reporting worse symptoms over time. If so, it is time to consider why and change course.
  2.  Consider if the patient’s presentation significantly exceeds what would be expected based on scientific knowledge of the condition. If the presentation is not biologically plausible, it is time to consider a psychological explanation for the presentation, reexamine the diagnostic impressions, treatment, and advocacy efforts.
  3. Do not feel compelled to immediately fill out disability paperwork or other paperwork supportive of compensation requests without having some data to support your position. If a physical limitation is described as disabling, refer the patient for a functional capacity evaluation. If the patient claims cognitive impairment, send the patient for a neuropsychological evaluation so the role of psychological factors can be explored. These types of evaluations can provide very useful information about the reliability and validity of the patient’s symptoms that is based on objective data and supported by peer-reviewed research.
  4. Use data from the above evaluations to help guide decision making. For example if you find out the there is overwhelming evidence that the patient’s presentation is exaggerated, malingered, and/or caused by psychiatric as opposed to neurological problems, it is time shift the care to a psychiatric focus and only treat physical symptoms that can be objectively verified.
  5. Consider the possible harmful effects of continued treatment without employing reliability and validity checks. For example, if you are treating a non-existent attention problem with a neurostimulant you can be raising the patient’s blood pressure to dangerous levels. If you are keeping patients in physical therapy for gait imbalance who are not improving and who have a non-physiological gait pattern, you are restricting access to care for patients with genuine medical problems who need the service. The same applies for ordering diagnostic tests (e.g., CT scans which expose patients to radiation) that have very little chance of yielding any new information given what is already known about the case.

In sum, health care providers best help patients by using objective data to guide case conceptualization, treatment, and advocacy efforts. Sometimes, you need to be skeptical, sometimes you need to say no, sometimes you need to say something the patient may not want to hear, and sometimes you need to decide and communicate that there is nothing else you can do. This can all be done in a polite, caring, and respectful way. It does not mean that you have failed if all of your patients do not get better. Some will never get better and some do not want to. It’s just the reality of working in the modern day medical system.

Dominic A. Carone is a neuropsychologist who blogs at MedFriendly.com.

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  • http://twitter.com/balts Dr Steve Balt

    Perhaps slightly off topic, but another way in which patient advocacy sometimes backfires is when the doctor tries too hard to get insurance-company approval for a medication or a procedure.  I’m not saying that a doctor shouldn’t advocate for his or her patients, but in the strictest sense, “advocacy” is simply performing a good-faith evaluation and making a treatment recommendation.  Not paying for it, or getting someone else to pay for it.  In other words, an insurance policy is a contract between the patient (not the doctor) and the insurance company, about payment, not about treatment.

    Doctors’ insistence on “going to bat” for their patients is admirable, but it protects patients from the fact that they are being punished or taken advantage of, and, furthermore, it shifts the burden to doctors (who are overworked as it is) and away from the people who are best positioned (politically and economically) to change the status quo, namely the patients themselves.