Heroes Not Zombies

Dee Mangin, Iona Heath and Marc Jamoulle have published this week, in the BMJ, one of the best editorials I’ve ever read. It gives me hope.

They comment on a report from the US Institute of Medicine on people with chronic illnesses living well and right at the outset say it doesn’t go nearly far enough. They claim we need a shift in emphasis from “reducing mortality” to “living well”.

In recent years the single disease model has become an end in itself as disease management frameworks and targets for single conditions have become embedded in evidence based guidance and care pathways. Focus has shifted from patients and their experience of diseases to measuring parameters of the diseases themselves. Although evidence based models of single diseases in isolation work well for patients with one disease, they can lead to “siloing” of care for people with multiple conditions, and this can result in chaotic care. One study found that applying individual disease guidelines to a patient with five chronic conditions would result in the prescription of 19 doses of 12 different drugs, taken at five time points during the day, and carrying the risk of 10 attendant interactions or adverse events. Care that is “measurably better” may be meaningfully worse and a nightmare for the patient.

The prioritising a disease model approach over a person centred one leads to polypharmacy and steadily increasing numbers of patients being harmed, or even dying, from the very drugs prescribed to help them. As the authors point out, a lot of the problem comes from excessive and inappropriate use of guidelines –

The use of guidelines as standards enshrines polypharmacy and therapeutic positivism

and

Recommendations in guidelines are often based on the average response in study populations that are usually selected to be free of comorbidity and polypharmacy. Applying such evidence to the treatment of those with comorbidity who are taking a variety of drugs reduces benefit to an unknown extent and increases the potential for harm. The evidence base for the effect of treatments in the context of comorbidity is poor and does not account for variability in the genesis, expression, and progression of illness; the interaction of illnesses; the physiological damage caused by the stress from life events; and the impact of biopsychosocial interventions

One of the most important and stand out sentences in this editorial is

Chronic illness is characterised by its variability

Well, human beings, actually are characterised by their variability. Everyone is unique. No two people share the same story, the same life events, the same experiences. No two people make sense of their lives the same way or respond to their illnesses the same way. It’s time we redesigned our health care to take that simple fact on board.

There is a pressing need to reverse the current trend towards management of individual diseases in silos so that care of patients with chronic comorbid illness is much more closely driven by their particular symptoms, needs, and treatment effects and their own priorities for care. An improvement in health status must be seen not as an end in itself but as the means to fulfilment and possibility in the life of the patient. Furthermore, healthcare systems need to start to value and provide adequate support for the kind of iterative generalist care that focuses more on the person than on the disease entity and the necessary variation this entails. This would place equal value on the art of “not doing”—making complex decisions not to give treatments, not to order tests, and to stop current treatments when in the best interests of the patient.