Adherence and caring

Well, every so often, you meet someone who brings this issue into a sharp and personal focus. Peter (not his real name, but he is a real person) was diagnosed with chronic obstructive pulmonary disease (COPD) about three years ago.

Like many people, he was prescribed a preventer and a reliever. The preventer medicine is the UK market leader which generated worldwide sales of more than $8bn in 2012. It is a relatively simple, well-established therapy that most people find effective. Peter is a clever guy, the product is proven and effective, and the NHS provides it free. So why doesn’t he take it as often as he knows he should?

I met him for an internal design research project; we talked about his illness, the therapy and life in general. The diagnosis and prescription were simple; the context within which he was adhering to the therapy was anything but.

Peter doesn’t blame his father for this, but he knows that growing up in a house “with a father who smoked 40 a day” is the root cause. Smoking killed his father, whose later life was blighted by the damage done to his lungs. Peter saw at first hand the physical and psychological effects of COPD and knows that, at 40, it is starting to take its toll on him. This is the emotional backdrop to his life: first-hand knowledge of the inevitable consequences of something over which he had no control.

At the same time as he was coming to terms with this diagnosis, his 82 year old mother was admitted with a serious leg infection. Over a period of time it became life-threatening; she developed septicaemia and gangrene, and eventually her leg was amputated. Peter was there for her: supporting her in the hospital, and sorting out her finances at home.

And while this was going on, Peter’s wife became pregnant with their second child, a pregnancy complicated by serious bleeding at an early stage. For a while, he and his wife were unsure whether they had lost the baby.

In the background is his job. The economy is at its nadir. He is managing a team of people, trying to align and motivate them but also concerned about the many demands at home, and concerned that he is not as present in the workplace as he should be; and failure in management is a very public failure.

The culture in his business is to release the day’s tensions over a beer on the way home. In the pub he forgot some of his worries for a time but, coming home, he found that his emotional reservoir was still empty. He was finding it harder to deal with life’s pressures; the resilience he needed for his wife, child and family was lessened not improved, increasing his sense of failure to cope with what he believed to be the typical pressures of life.

For a while, however, the pub seemed to provide an escape but as time went on two things happened. Firstly, he came to depend on this time away; while part of him recognised that he was increasingly less present and less able to deal with all the other things in his life, for a while he was unable to do anything about it. He just got more dependent and more depressed.

Secondly, his weight ballooned. At his heaviest, he reckons he was about ten stone overweight. This is a clever guy: he knew the effect this would have on his COPD and the rest of his body, he saw the result of his father’s weight increase, but he could do nothing about it.

This brings us back to where we started — his adherence to the COPD therapy, which now seems the least of his worries. In fact, with everything else happening to his mind and body, it’s conceivable there would have been no net benefit had he taken it twice a day.

Maybe he got so scared about where he was headed; maybe it was more positive than that — perhaps he rediscovered his sense of self-worth, that he did deserve to live better than this? Whatever it was, there was a day when Peter, alone in his office, decided to ask for help.

That was all he did, but we shouldn’t underestimate the effect of that simple choice which, once made, resulted in everything a modern healthcare system has to offer being made available. Instead of struggling with this solitary burden, he is now getting real help and is recovering.

For all of us involved in the delivery of modern medicine it is sobering and yet comforting to realise that it was Peter’s self-efficacy that made the difference. The professionals, the medicine and the devices were all peripheral to the transformation he made for himself. It’s certainly part of healthcare’s role to simply be there when the person decides to take it up again, to be accessible and usable, and to put no further barriers in the path of someone who seeks to improve their health. At their best, professionals, medicine and devices aspire to go beyond accessibility and usability, perhaps to be purposeful, attractive and collaborative. Ultimately to make people understand that good health is easily within reach and that we have a point of view: we care that they get better.