Pancreatic cancer is well known as the cancer with the lowest profile. A poorly understood and minimally researched disease, its dismal prognosis has an aura of untreatability that is instilled from the first years of medical school. I spoke with a surgical colleague recently who bemoaned this diagnosis. “The physicians tell their patients not to bother with the surgery because they’re going to die from it anyway. Five year mortality rates are 90%, yes. But the untreated life expectancy is 9 months. I don’t see the issue.”
It made me think about the issue of how a cultural bias within an organisation greatly limits how effective it is at treating it. For the psychiatrists, our maligned and ignored entity is the personality disorder.
A personality is the way in which a person interacts with the outside world, and themselves. They may be more neurotic, or conscientious and so on. A personality disorder refers to those in which a personality is so badly skewed in one direction that it interferes with the person’s own functioning. An obsessional person may be preoccupied with rules and regulations, the disordered variant spends so much time on planning that they are regularly unable to achieve anything productive. A dramatic person may be prone to flights of fancy, the disordered variant is so driven by seeking approval from others they are unable to form relationships. Whilst schizophrenia receives a lot of publicity as a mental illness, it has a lifetime prevalence of less than 1%. Personality disorders are expected to affect almost 10% of the Australian population.
These are far from benign conditions. Having a personality disorder increases your risk of depression fourfold. Forensic psychiatrist W.E.Lucas noted that 63% of detained men had antisocial personality disorder. Soeteman et al studied 1420 people with personality disorders in 2008, determining that the overall cost to mental health services was about $17,000 – per patient, per year.
Due to (previously) a lack of available treatments, and a disappointing level of response to medications in particular, there has been a reluctance to engage this afflicted cohort, despite the considerable public and personal burden. A recent study in the U.S. found that 70% of psychiatrists chose not to tell their patients a personality disorder diagnosis, due to the high stigma attached to same.
This is disappointing, as there has been considerable progress in its treatment and available resources – not in the areas of medication (although they are associated with some relief), but in specific forms of psychotherapy and social interventions. The renown Dr Marsha Linehan, herself a sufferer of borderline personality disorder, developed dialectical behavioural therapy, a powerful intervention that directly responds to the cognitive and emotional skews that borderline personality encourages. Psychodynamic psychotherapy, previously dismissed as a costly and lengthy intervention with minimal verifiable gains, is now re-emerging in shorter, better targeted forms, with benefits clearly seen in the literature.
I recently saw a patient to whom I gave the diagnosis – a clinician herself, it was difficult for her to accept it, given her experience of personality disordered people and a strong revulsion of wanting to have anything in common with that group of people. As with many diagnoses, there are some for whom we can do nothing. But there are many we can treat, and treat early, so as to greatly change the trajectory of their life experience. In order to do so, we need to change our perception of the disease. Both doctor and patient must be willing to respond to what is a surmountable problem. Otherwise 10% of the population will continue without knowing the life they were supposed to lead.
A human being is a creature of chaos. We are supposed to make rational decisions, irrational other times, be sometimes driven by fear, others by courage. A personality disorder robs a person of that complexity, and turns them into a cartoon character of predictable decisions. My psychotherapy is primarily with older people with personality disorders. They all tell me the same thing – after seeing themselves change, they wonder what kind of life they could have had, if something was done about it before.