It’s time for amputation to be a polite subject in health care discussions

The MJA this month leads with a startling statistic. Diabetes-related foot disease is apparently causing ‘a limb (to be) lost every 3 hours.’

As someone who works in amputation rehabilitation for a living, I think the data are more nuanced than just the scary headline. Let me start by saying that I don’t disagree with the authors of this article in their conclusions. The impact of foot disease in diabetics is a massive and costly problem which is currently underestimated and underfunded. The best evidenced-treatments such as custom footwear and multidisciplinary team care are not currently accessible for most diabetics, even in tertiary care. In our unit, following a major lower limb amputation operation, our patients have an average length of stay of around 6 weeks in rehabilitation. Some stay much longer, especially if they can’t return home. Preventive foot care may save some of these very expensive and prolonged hospitalisations, which can only be a good thing. The cost-effectiveness of these preventive interventions looks like a no-brainer when you examine the costs of amputation surgery and the subsequent lengthy rehabilitation that results. Even more so when the costs of moving amputees into long-term residential care are considered.

What does irritate me a bit is the seemingly irresistible urge for well-intentioned clinicians to stereotype amputees by the very language they use whenever the subject is discussed in the public domain. An amputation operation is almost always referred to in public discourse as ‘limb loss’. The commonest diabetes-related operations are partial foot and trans-tibial amputation, at the level of the middle of the foot, and the upper third of the shin respectively. Neither is even close to a whole lower limb. Both usually result in an amputee who, when fully rehabilitated, can function with reasonable independence compared to their state before the operation. The amputation operation in each case should be understood as a reconstruction of part of a limb to save life (if life is threatened) and to leave the amputee with a residual limb they can use. So rather than referring to an amputation as loss of a whole limb, it is much more inclusive and less stigmatizing to be accurate with your language, and don’t simply assume that having part of a limb is the same as not having one at all.

My own observation from the coalface, where I have been involved with amputation rehabilitation on and off for over a decade, is that while we may be doing more amputation operations than ever before, there are good reasons for this. Ten years ago, it was uncommon to have an amputee who was on kidney dialysis. In 2002 as a rehabilitation trainee in Geelong we had exactly 3 for the whole year, representing less than 10% of our workload that year. Now, at least half of our amputees are on dialysis. They have had longer and more complicated hospital stays prior to their amputations. It seems to me that diabetics are living longer while sicker, and this is why more of them are surviving long enough to undergo end-stage operations like lower limb amputations. The clinical and social role of the lower limb amputation operation has changed hugely in just the last decade, but it is still seen by many as an admission of medical defeat, and as a procedure where shame, disfigurement, disability and misery are inevitable. With appropriate rehabilitation (not always readily available outside metropolitan areas) this doesn’t have to be the case.

One of my mentors in rehabilitation once said to me, ‘You should be kind to amputees, because you won’t know them for long.’ A decade ago, the chances of surviving 2 years after a major amputation were only around 50%. The big killers were heart attacks and strokes, symptomatic of the blood vessels that had reached the end stage of their diabetes-induced deterioration. I believe we do much better than that these days, due to improvements in diabetes treatment, but at least as importantly because of more systematic preventive care for diabetics. But as the Australian type 2 diabetes epidemic enters its second decade, and goes into the truly expensive and overwhelming phase that has been predicted for a while now, the search is on to find smart and effective ways of delaying or preventing altogether some of these big-ticket consequences.