Tal Golesworthy has Marfan’s syndrome.1 This inherited disease can stretch the supporting tissue of eyes, bones and joints but its most sinister effect is on the aorta. Weakened by the changes in collagen caused by Marfan’s, the aortic wall carries a high risk of sudden, fatal rupture. When Tal faced this possibility he was advised to undergo the conventional prophylactic measure of replacing the affected part of the aorta and its adjacent heart valve with plastic components.2
He appreciated the offer and was aware of the risk he faced without surgery – but he put the decision to go ahead on hold. A procedure that stopped his heart, halved his body temperature, and swapped a normal valve for a mechanical replica needing life-long anticoagulants was in no way attractive. He needed to think…
Tal is a research engineer familiar with pipes and pressures; so he reflected on what he would do if faced with a similar problem in industry. He wouldn’t shut down a complex, functioning machine to replace an endangered pipe; he would simply wrap something strong around the outside to give it the support it needed. No interference with the pump, valves or circulation, and nothing else to add in – an easier, quicker, and less risky job all round.
In the next few years Tal and a small multidisciplinary team developed a way of creating an external aortic support – a woven splint tailored for each individual patient. He persuaded a cardiothoracic surgeon to insert the first ever production prototype into a suitable patient – himself. Recovery from this pioneering surgery was rapid and he remains well without medication. Repeated scans of his aorta show excellent stability and no complications.
Tal’s story, available on public video3, is stirring in its originality and courage; but it is also disturbing in its description of the barriers he had to overcome to make progress with his better treatment. Technically, the development was straightforward; the greatest challenge lay in communication and attitudes. Jargon and different personal perspectives threatened effective understanding of both the problems presented and requirements needed for a successful remedy. He also quotes arrogance amongst medics – his status as a patient and engineer clearly put him in a lower class. Professional jealously and institutional opposition through bureaucracy and ‘mutually destructive one-upmanship’ also severely hindered what he was trying to achieve.
PRIME’s teaching frequently focuses on the consultation between doctors and patients, aware that the barriers Tal experienced can easily find their way into a clinical setting. Few patients will think as far as Tal, but all will have ideas about the cause of their illness and the value & risk of any prescribed treatments.4
Recent publications5,6 suggest that Tal’s views are now being taken seriously – and therein is progress. Respectful listening, humility and clear communication with our patients will undoubtedly advance their progress to better health. And where we can, we should seek opportunities to influence for good the institutions in which we work.
4. For example: nature.com/jhh/journal/v18/n9/full/1001721a.html