Finding time to be a patient is the hard part

MEDICAL MATTERS:Increasingly, the burden of managing chronic illness is falling on patients and their families

THE YOUNG woman in front of me sighed deeply and said: “I really haven’t got the time to go and see someone else.”

I had just suggested seeing a psychologist to complement her treatment for anxiety and depression. But with a job and a young child to attend to, and regular appointments with the local psychiatric unit, my brightly-put evidence-based recommendation suddenly seemed less bright.

Where was she going to fit in a weekly session of cognitive behavioural therapy, which would probably eat up a whole half day when travelling to and from her appointment was included?

It’s a growing problem in healthcare. Doctors and nurses are increasingly expected to follow expert guidelines based on rigorously examined research evidence. But sometimes these guidelines are simply too demanding for patients.

They are based on results from perfectly set up research trials, in which the subjects are often young and have been selected because they just have the single disease being investigated.

Naturally, they are facilitated in adhering to the treatment being tested, whether this is by way of free medication or the kind of deluxe follow-up that will never be offered in the real world.

Most real life patients have a number of chronic diseases. Someone with diabetes, for example, may also have high blood pressure and elevated cholesterol.

Yet the treatment guidelines given to doctors rarely address the reality of comorbidities, even though up to 60 per cent of older people have multiple chronic conditions. And increasingly, the burden of managing chronic illness is falling on patients and their families, as care moves from hospital to home.

To add to the burden, treatments are often imposed on patients with little coordination between different specialist clinics. It’s a recipe for overtreatment, polypharmacy, more side effects and unrecognised drug interactions.

The overall effect is to turn being a patient into a job. The work of being a patient includes organising doctors’ visits and investigations. The diligent (and wise) ones take on the task of ensuring that different healthcare providers are up to speed on the latest information on their care.

The following description of what it's like to stick to a complex drug regimen appeared in the British Medical Journalrecently; it was written by a man in his 70s with heart failure.

“I’ve got a book and I note everything down. I note the time, the drug, and when I’ve taken it. When you are doing activities around the house or you are otherwise engaged you can quite easily forget to take them, and sometimes you don’t really know whether you have taken them or not . . . so if I think I haven’t done it, I have a look and if I haven’t ticked it off I assume I haven’t taken it. You have to be careful . . . ”

Another refused an offer from his GP to attend a specialist heart failure clinic. He had worked out that he had made 54 separate outpatient visits to hospitals in the previous two years. It was the equivalent of one full day every two weeks devoted to “patient work”.

Some experts want to call a halt. They have suggested a new approach involving “minimally disruptive medicine”. It has four basic principles: establish the weight of burden on each patient; encourage coordination in clinical practice; acknowledge comorbidity when establishing clinical evidence; and prioritise care from the patient’s perspective.

Ironically, there was a time that GPs were encouraged to coordinate care for people with multiple chronic diseases; now the incentive is to improve outcome in specific diseases rather than to manage the person holistically.

We have been drifting towards the American system of having an “ist” for every health problem – a series of specialists who deal with each illness in isolation. It is a weakness recognised by President Obama in his efforts to radically overhaul the US health system.

Not alone do we need minimally disruptive medicine, but we ought to work towards more integrated medicine. And evidence-based medicine must change to base its conclusions on the testing of treatments in people with multiple diseases living real lives in the community.

These trials must include measures of what participants think about the feasibility of treatments as well as a formal assessment of the burden they cause. Getting real will also save our cash-strapped health system millions in unachievable treatments and unrealistic interventions.