By Michael Dillon, PhD*
“The overriding emotion was like, oh, wow, look how much they took off already… it was horrific, really confronting. I felt violated afterwards.”
Partial foot amputation is a life changing event. Unfortunately, many people seem poorly informed about the amputation surgery itself, likely outcomes, and the risks of complications. As such, the experience often differed from people’s expectations, or they were ill-prepared when complications arose.
It was in response to these scenarios that we developed the Amputation Decision Aid website, which includes a collection of freely available resources to help people make more informed decisions about partial foot amputation due to peripheral arterial disease.
These resources will be of most value to people facing the prospect of partial foot amputation, and the healthcare professionals who help guide these difficult decisions.
The shared decision-making approach promoted in these resources will be of interest to anyone wanting to empower consumer choice, improve health literacy, and encourage more meaningful conversations targeted to informed decision-making.
Our goal is to fundamentally change the way decisions are made about amputation surgery. We want to ensure people have access to meaningful conversations with a healthcare provider; conversations that include accurate and unbiased information about their treatment options, the likely outcomes, as well as the risks. We want to see people supported as they deliberate on such a difficult decision. Only then can people make truly informed decisions about amputation surgery.
Our motivation to produce the Amputation Decision Aid is perhaps best understood through the lived experience of those who’ve faced difficult decisions about partial foot amputation.
As part of our research, we had the privilege of talking with people about their experience of partial foot amputation. While hearing peoples’ stories first-hand was often confrontational and sometimes heartbreaking, these stories became so important in shaping our understanding of the challenges many people experienced.
“After a week I was told they hadn’t taken enough off and I would need a debridement. I thought it would be like shaving Parmesan cheese off. They should just say, we’re going to chop off another inch or two…”
These interviews gave us pause to reflect on just how challenging it can be to help people learn about the different surgical options and what was involved; particularly given the impact that pain medication and anxiety can have on new learning.
“You’re on massive amounts of pain killers. Your decision making isn’t as clear as it would normally be. Your emotions are all over the shop. It’s very foggy you know. You’d take pain killers and 2 hours later you’d realize you’re still looking at the fish tank. It made communication so hard.”
Many people thought that partial foot amputation would resolve chronic wound problems. Unfortunately, complications and reamputation are common after partial foot amputation, particularly in people with advanced peripheral arterial disease.
Our research shows that about 40% of people will experience significant complications like dehiscence (the wound splitting open), ulceration, or wound failure. At 3 months post amputation, about 50% of surgical wounds won’t have healed. For these people, partial foot amputation doesn’t resolve the complications that contributed to the initial amputation, but leads to further wound care that is often painful, time consuming, and limits participation in activities that bring joy and meaning to life. Many of the people we interviewed were anxious about what the future might hold, and worried about the prospect of further amputation surgery.
“I think there were 14 different operations over 5 years… trying to salvage as much [of the foot] as possible.”
Fast forward to 1 year after amputation surgery. About 25% of partial foot amputations will have been revised to a higher level and 12% of people will have had 3 or more amputation surgeries on the same limb. About 17% of people will have died 1 year after their partial foot amputation given the long-term effects of advanced systemic diseases such as heart disease or nephropathy. Five years after the initial amputation, about half of all partial foot amputations will have been revised to a higher level. Just over 40% of people will have died.
Given an understanding of the experience of partial foot amputation, and our knowledge about the high rates of complications, we wondered what decisions people would make about their healthcare if they were better informed? Would some people choose a toe amputation, or would they opt for a mid-foot or below-knee amputation if it reduced the risk of complications or reamputation down the road?
While these questions may seem odd to many people—after all, who would choose below-knee amputation over a toe amputation?—it is important to recognize that in other areas of healthcare, such as breast cancer surgery, people routinely opt for more invasive interventions to reduce their risk. These decisions are often informed by good research evidence. The genetic counsellors who facilitate many of these discussions are well trained to help people navigate difficult healthcare decisions, work through ambiguity, and contextualize what the research evidence means for a particular patient.
In our interviews with people about their experience of partial foot amputation, many people identified ways that we might help improve the experience. A lot of the advice resonated with our understanding of innovative models of healthcare such as shared decision-making.
“I would ask what the mobility comparisons would be between the two amputations. I probably should have asked more questions about being confined to the house, everything that was involved around the VAC machine…—having to be on pain killers. The quality of the time. If there were statistics on success rates, I’d point those out too.”
Shared decision-making describes a collaborative process whereby clinicians and patients engage in meaningful conversations focused on making a very specific healthcare decision, such as the choice between a toe amputation, mid-foot amputation, or a below-knee amputation.
At first glance, a shared decision-making consult might look like any other. However, a shared decision-making consult is deliberately designed to empower patients by providing accurate and unbiased information about all the treatment options, the pros and cons of each, as well as support that allows people the time and space they need to deliberate on the path ahead given their circumstances, values, and preferences. We can’t emphasize enough the importance of meeting people where they’re at. Some people may simply need time to reflect. Others will want the opportunity to discuss the path ahead with a family member or connect with a well-established peer support program like those offered by organizations such as Limbs4Life (limbs4life.org.au).
The process of shared decision-making can be enhanced by high-quality resources developed in accord with the International Patient Decision Aid Standards; resources such as those available on our website:
- Amputation Decision Aid—specifically written for people facing the prospect of partial foot amputation due to peripheral arterial disease. It includes unbiased information about the different options, the likely outcomes, and risks of complications. Information is presented in simple terms to facilitate understanding.
- Amputation Discussion Guide—a companion resource for healthcare professionals that includes up-to-date research evidence and example conversation starters to facilitate meaningful conversations tailored to the needs of each individual patient.
We also recognized that if we were serious about changing the way people have conversations about partial foot amputation surgery, we also needed to provide training for healthcare professionals.
- Training videos—a series of five short, animated, videos to help healthcare providers learn more about shared decision-making and how to use the resources we’ve developed.
Our work was guided from the outset by an expert advisory panel including people with a lived experience of partial foot amputation, as well as healthcare professionals including vascular and orthopaedic surgeons, high-risk foot experts, podiatrists, rehabilitation specialists, prosthetists/orthotists, and wound care experts.
We’d like to acknowledge and sincerely thank the American Orthotic and Prosthetic Association (aopanet.org) and the Centre for Orthotic Prosthetic Learning for their generous financial support. We would also like to thank members of our expert working group—in particular, the many people living in the community with partial foot amputation—who helped guide our work.
Feel free to share the website—amputationdecisionaid.com—on social media as well as with colleagues, patients, caregivers, and students. We welcome your feedback.
*Dr. Michael Dillion, PhD, is Professor in Prosthetics and Orthotics and Head, Department of Community and Clinical Health at La Trobe University in Melbourne, Australia. He writes on behalf of the developers: Professor Stefania Fatone PhD, Matthew Quigley MCPO(Hons), and Jake Eadie MCPO, BID. Professor Dillion can be reached at: Michael.Dillon@latrobe.edu.au.