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.

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11 Comments sorted by

  1. Comment removed by moderator.

  2. John Drayson

    Social commentator

    While we comment on terminology it may have been more inclusive to say 'more patients' or 'more people' are surviving longer, rather than 'more of them'. The othering nature of the term 'them' gives the impression that those in question are not a part of regular society. The amputees I have met have been people first, and patients, sufferers and victims secondarily. Otherwise an excellent piece, thanks for sharing.

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    1. Ben Koh

      Sports Doctor. PhD social Research into Athlete Motivation. ACSM (Health Fitness Instructor and Exercise Specialist). Ex-elite swimmer.

      In reply to John Drayson

      Agreed that it is an excellent article.

      In response to your feedback, John, to the terminology used:
      The phrase "more of them" was taken from the sentence "... 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..."

      You mentioned:
      "...may have been more inclusive to say 'more patients' or 'more people' are surviving longer, rather than 'more of them'. The othering nature…

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    2. Michael Vagg

      Clinical Senior Lecturer at Deakin University School of Medicine & Pain Specialist at Barwon Health

      In reply to John Drayson

      Thanks John and Ben for commenting.

      I believe that Ben's interpretation is accurate. The referent 'them' is clearly only applicable to the previously mentioned 'diabetics'. Looking at it again, I still think it's the natural reading to interpret it that way.

      Clearly in the context of the whole article, I am firmly on the side of inclusiveness. As rehabilitation physicians, we receive training in disability activism as part of our specialty program, and we are very aware of the subtle (and…

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    3. Ben Koh

      Sports Doctor. PhD social Research into Athlete Motivation. ACSM (Health Fitness Instructor and Exercise Specialist). Ex-elite swimmer.

      In reply to Michael Vagg

      Hi Michael,

      Thank you for your further comment.

      As a general rule, I think writers/commentators should be cognizant that in an academic discussion, prejudicial statements targeted at any group should be carefully phrased. Language and terms used should be objective and evidence-based, and if perspectives are anecdotal, be diligent in ensuring that it is not a prejudicial comment shrouded in “objective” personal opinion. In dealing with semantics and labels, it is also important that we first…

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  3. rory robertson

    rory robertson is a Friend of The Conversation.

    former fattie

    Thanks Michael, for your disturbing insights as part of the health system trying to deal with the growing numbers of those suffering the ravages of diabetes. Good on you, and I admire your efforts at the "coalface". The story of amputations makes me shudder because there but for the grace of God go I, or my kids, my uncles or any of our readers' loved ones. You worry that, "...as the Australian type 2 diabetes epidemic enters its second decade, and goes into the truly expensive and overwhelming…

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  4. Ann Larson

    Social researcher and evaluator

    You are missing another reason that the number of people with amputations is increasing -- lack of good quality wound care. Preventative care should not be dismissed as too long and costly. Specialist wound care nurses save lives. As more and more people with diabetes complications are treated in a crowded primary care system which does not access specialist knowledge. Research I was involved in showed that when primary care nurses had access to expert advice, rates of amputation fell dramatically.

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    1. Ben Koh

      Sports Doctor. PhD social Research into Athlete Motivation. ACSM (Health Fitness Instructor and Exercise Specialist). Ex-elite swimmer.

      In reply to Ann Larson

      Agreed! But I think it is not so much specialist "knowledge" and "advice" but rather "access". It is important to have early detection (either by nurses or primary care doctors), but detection without preventative/corrective treatment does not affect the end outcome (amputation). Moreover, in educated patient populations, the reliance on wound care nurses and primary care doctors to detect/ameliorate early issues is probably less important than having the option for corrective (surgical) measures…

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    2. Michael Vagg

      Clinical Senior Lecturer at Deakin University School of Medicine & Pain Specialist at Barwon Health

      In reply to Ann Larson

      Thanks Ann

      I wouldn't disagree that lack of expert wound knowledge in primary care is contributing to the risk of lower limb amputations. The MJA paper that prompted my post makes several excellent recommendations including strengthening primary care expertise. It also emphasizes data collection as we currently only have a very grainy view of the problem, and we desperately need to know which interventions we should be backing to the hilt, and which ones are more nice-to-have type interventions.

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    3. Ben Koh

      Sports Doctor. PhD social Research into Athlete Motivation. ACSM (Health Fitness Instructor and Exercise Specialist). Ex-elite swimmer.

      In reply to Ben Koh

      Addendum:

      I just wanted to clarify that my earlier comments is an alternative perspective in the academic discourse, and acknowledge Dr Larson's professional credentials and experience in the topic.

      I have also reviewed the scientific literature and read the articles by Dr Larson (specifically Ellis and LARSON (2010). Accessing expert clinical support in the bush: Lessons from implementing a store-and-forward imaging system for managing chronic wounds. In A Bright Future for Rural Health…

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