November 30, 2020

CP Online Health

Eat Well, Life Well

One of my most popular posts ever is one I wrote many years ago on malingering. Secondary gain, like malingering or symptom magnification is one of those terms used by people who don’t live with persistent pain, and commonly used when a person with pain doesn’t seem to be progressing “as expected”. The term is an old one, originating in the psychoanalytic literature, brought into compensation and insurance environments but never really examined (Fishbain, Rosomoff, Cutler & Rosomoff, 1995) until well after it had become a popular label.

Freud first identified the potential for gains from being unwell – primary gains referred to the direct gains obtained from developing a psychiatric illness in the face of unresolved psychic conflict while secondary gains were considered to be “an interpersonal or social advantage attained by the patient as a consequence of his/her illness”.

The sick role, or illness behaviour, is a sociological phenomenon (Bradby, 2009). As a society we permit people who are unwell to take time off responsibilities of paid employment, caring for others, socialising and doing the everyday life activities that people do. We also, in some cases, pay people to stay away from work, both to undertake recovery and to protect others from the illness in the form of sick leave entitlements and compensation. To ensure “fairness” or a sort of moral agreement between the ill person and society, humans have used healers, shaman or religious authorities to ensure the person has an authentic problem: ie, that they are morally fit to receive our help.

To most of us, particularly people in Australia and New Zealand, UK, Canada with largely socialised healthcare systems, the idea of sharing the burden of ill health through socially sanctioned support seems natural. We allow people a period of time to get well and then, when recovered, the person can return to normal activities. If the person sustains some nasty event, like spinal cord injury or brain injury, leaving him or her with ongoing ill health, we support ongoing payments (some more than others, depending on the funding bucket used). It’s easy to justify this when the person’s problems are visible – but for people with less visible, or truly invisible disabilities, our moral compass starts going awry.

For example, we have Mobility Parking: but woe betide the person with an invisible disability such as irritable bowel disorder, or panic disorder, using the park even when displaying the appropriate sticker! Tut! tut! tut! It is even more difficult with an invisible problem such as persistent pain, and even more so when the person’s problem hangs around. Secondary gain is the word whispered in the wind as people judge whether this person really has a problem – or is it “secondary gain”?

Let’s unpack the notion of secondary gain. From a behavioural perspective, behaviour is repeated if (1) something introduced afterwards increases the likelihood of the behaviour being repeated, eg a tearful child is cuddled after tripping, meaning the next time the child trips, he will look for someone to cuddle him; (2) something unpleasant is removed as a result of the initial behaviour, eg the pain of a grazed knee reduces with some topical analgesia. In these situations, the child is not usually aware that the contingency offered changes what they do – they just do what makes sense.

It’s when we start looking at people who don’t fit the typical response curve after an injury, that commentators begin flinging the term “secondary gain” around as if the person deliberately chooses to remain ill. Of course, insurers who fund compensation received by the person have a vested interest in reducing their payments and, given persistent pain can’t be objectively measured either directly or indirectly (Tuck, Johnson & Bean, 2019), will question the motives of a person who doesn’t recover. And therein lies our problem.

In our societies, medical practitioners are pseudo priests in many ways. The word of a doctor holds a great deal of weight: medical certificates, death certificates, oh and judgements about diagnosis and recovery. When it comes to insurers, the opinion of a doctor is used to verify that a person really has the problem they say they have, and can then continue receiving payment. The problem with pain is, yet again, having no direct objective measure of pain. The doctor is assumed to have special powers to detect whether a person really has pain – and yet there is considerable evidence that many medical practitioners have very little training in pain and even less in persistent pain in their training (Shipton, Bate, Garrick, Steketee, Shipton & Visser, 2018).

How is the term “secondary gain” experienced by the person living with persistent pain? Lang, Igler, Defenderfer, Uihlein, Brimeye & Davies (2018) undertook an intriguing study of how the various ways pain in adolescents can be “dismissed” by clinicians. They report that 40% of adolescents indicate their pain was dismissed by others, with almost 30% of those individuals stating this was done by a physician (p. 664). It’s probably not surprising that this kind of dismissal happens more often to female adolescents! Their study established that no, the sense of being dismissed wasn’t an indication of adolescents being “too sensitive”, but rather, that being dismissed by either misbelief (you don’t really have this pain); minimising (you have pain but it’s not as bad as you think it is); secondary gain (you’re using this as a way to avoid something like school); and psychogenic (it’s your emotional state that’s the real problem and cause) – are all likely to lead adolescents to look for another opinion, and to feel stigmatised.

So – is secondary gain a real thing? I like to look at it through a different lens. Taking the moral judgement tone out of the equation (that belief that only people who truly ‘deserve’ help should get it), I like to look at the problem of delayed recovery through a lens of problem solving.

Yes, there can be some gains from being unwell – who doesn’t like a bit of fussing or to be excused from doing something you don’t enjoy. The question is whether these gains come at the expense of other things – and there’s pretty compelling evidence that the losses outweigh any possible gains (Worzer, Kishino & Gatchel, 2009). At the same time, telling someone “you’re just doing this because you don’t want to get better” or words to that effect is not likely to help them have any desire to change what they’re doing – it seems to shift the person towards resisting any change in how they’re coping. It’s counter-productive.

Let’s look at a few losses:

  • employment (and people DO value working for reasons other than money! – think self concept, identity, social interaction, daily routine…)
  • relationship loss (partners, family roles, friendships – some of the most profound stories I hear come from men saying they no longer have mates they spend time with)
  • emotional impact (depression, anxiety, anger, demoralisation, shame, guilt)
  • financial loss (with loss of employment and increased healthcare costs) (Worzer, Kishino & Gatchel, 2009)

What traps someone into these losses? What might maintain someone’s helplessness and demoralisation? Pain, of course, but so too does shame; stigma from time away from work (employers want to know if you have a “bad back” – then run a mile); lack of confidence about capabilities (am I reliable? can I be counted on?); disability (there are some things I cannot do); limited communication (how do I ask for help?) and a myriad of other things. For the avoidance of doubt, people do not magically “get better” once they obtain their insurance payout (Fishbain, Rosomoff, Goldberg, Cutler, Abdel-Moty, Khalil, et al, 1993).

What can we do?

  1. First do no harm, that means avoiding moral judgements about motives for ongoing disability. It doesn’t help and does harm.
  2. Second, begin working on the actual problems the person is experiencing – things like building consistency in activity levels; improving communication skills; increasing confidence.
  3. Third, start addressing the social stigma associated with persistent pain. This means taking a long, hard look at ourselves as clinicians, and at our workplaces and social scenes, and insurers or funders.

Why do we run from the conversation that yes, pain does persist for a good number of people? Why don’t we acknowledge that even the best treatment in the world may not reduce pain – and that this is not the person’s fault for not trying?

This doesn’t mean researchers and clinicians should stop searching for pain reduction approaches – it does mean giving those who are not helped the chance to view living well with pain as a viable option.

Bradby, H. (2009). Defining health, defining disease. In Medical sociology: An introduction (pp. 51-64). London: SAGE Publications Ltd doi: 10.4135/9781446211724.n4

Fishbain, D. A., Rosomoff, H. L., Cutler, R. B., & Rosomoff, R. S. (1995). Secondary gain concept: a review of the scientific evidence. The Clinical journal of pain.

Fishbain, D. A., Rosomoff, H. L., Goldberg, M., Cutler, R., Abdel-
Moty, E., Khalil, T. M., et al. (1993). The prediction of return to
the workplace after multidisciplinary pain center treatment.
Clinical Journal of Pain, 9, 3–15.

Shipton, Elspeth E, Bate, Frank, Garrick, Raymond, Steketee, Carole, Shipton, Edward A, & Visser, Eric J. (2018). Systematic review of pain medicine content, teaching, and assessment in medical school curricula internationally. Pain and therapy, 1-23.

Tuck, Natalie L., Johnson, Malcolm H., & Bean, Debbie J. (2019). You’d Better Believe It: The Conceptual and Practical Challenges of Assessing Malingering in Patients With Chronic Pain. Journal of Pain, 20(2), 133-145. doi: http://dx.doi.org/10.1016/j.jpain.2018.07.002

Worzer, W. E., Kishino, N. D., & Gatchel, R. J. (2009). Primary, secondary, and tertiary losses in chronic pain patients. Psychological Injury and Law, 2(3-4), 215-224.