Thousands of people facing amputation could be better supported through the use of a new resource developed by experts from La Trobe University in Melbourne.
The Amputation Decision Aid aims to improve the information given to people facing partial foot or below knee amputation due to peripheral arterial disease.
Peripheral arterial disease occurs when arteries become narrow and reduce blood flow to the limbs, in some cases leading to tissue on a person’s feet or legs dying – for which amputation is often suggested.
About half of all people who undergo these amputations will experience complications. About half of all wounds won’t have healed within three months of surgery and about one in four will require further amputation within a year.
Lead researcher Dr Michael Dillon says the resource has been developed to address issues which were found through interviews with people who had already experienced this kind of amputation, in the hopes patients could make more informed decisions about their surgery.
“Some of the interviews we did with people were quite confronting to listen to, and there were a few things that really resonated for us,” he says.
“One was that people often seemed really poorly informed about what surgery would involve, what the outcomes might be, and risks for complications down the road.”
Many interviewees told the researchers they didn’t know about the chance of needing further amputation after the first surgery or they struggled with making informed decisions about their amputation while on narcotic pain medication.
Dr Dillon explains, “You could have the best health care consult with the most diligent clinician or surgeon and they can tell you all the right things, but if you’re not in a headspace where you can take onboard information it probably doesn’t matter how good the consultation was, it still hasn’t been effective in helping you learn.
“People told us of the importance of a meaningful conversation, where clinicians were taking the time to explain things, where the person isn’t in a hospital ward with a bunch of other people in white coats talking about them, but a meaningful one on one consultation.
“People also told us they wanted something to take away and read when they could digest the information.”
For Dr Dillon, the interviews backed the need for a different approach to help inform decisions about amputation, called shared decision making.
“In its simplest form, shared decision making really describes a process where clinicians and patients work collaboratively to make a specific health care decision,” Dr Dillon says.
“While the approach has been widely adopted in lots of settings, there’s often a lot of misinformation about what it is, for example, a lot of clinicians would say they already do shared decision making, but studies that look at the interaction between clinicians and consumers highlight that’s not true.
“Shared decision making is more than just having a clinician that can hold a good conversation, but actually making sure that people are presented with all the treatment options, not just those that a professional might recommend, or supporting people to reflect on the difficult decision they have to make.
“A lot of the consults are still very patriarchal – a clinician will come and say, ‘Well we’ll have to do an amputation and the amputation we have to do is this one’.”
Shared decision making is more routinely used in cancer care, Dr Dillon says, where people are presented with more options for treatment, often including more invasive surgery.
Cancer patients also often choose more invasive surgery options when given the full scope of their complications and risks, whereas people deciding on the level of amputation were likely to choose less invasive surgery, despite the risk of further complications and surgery.
The Amputation Decision Aid includes a suite of resources to support people in making the most informed health choice as well as a discussion guide for clinicians to use.
The Amputation Discussion Guide includes topics such as wound healing, pain, quality of life, complications, and the risk of dying to help clinicians have the best conversations with their patients and ultimately deliver shared decision making.
The final pillar of the Amputation Decision Aid is a set of short training videos explaining how to put the Aid into practice.
Although the Amputation Decision Aid can be a beneficial support for health professionals and patients, it is not designed to prevent amputations, only to make the experience a better one.
Dr Dillon says it would be unrealistic to assume the Aid could solve all the problems of people facing amputation as they often will continue to have health complications, but that the resource can lead to better outcomes post-surgery.
“At least people will know the risk and the complications which could arise. In those people who are better prepared, they tend to have much less experience of anxiety and depression following surgery.”
While the Amputation Decision Aid is publicly available and being promoted in medical settings, Dr Dillon says the job of supporting people facing amputation is not finished and the next phase of the research is to test the resource.
With further testing adaptations can be made to ensure there isn’t anything missing which should be provided to support people facing amputation.
It is important to understand the Amputation Decision Aid can currently only be used by people facing amputation due to peripheral arterial disease, because it contains specific statistics and data which only apply to that cohort.
However, the shared decision making approach promoted in the Amputation Decision Aid can be transferred to a range of situations where people have time to make a decision about the treatments available to them, Dr Dillon says.
It does not work for traumatic situations requiring amputation, as quick decisions need to be made about treatment in those cases.
The Amputation Decision Aid can be accessed here.