Insights And Lessons Learned From Amputee Support Groups

Recently, I was a part of several amputee support groups and began to better understand the nuances of post-amputation care. I explored what it means to be an amputee through the eyes of patients, families and caregivers. I am certain this understanding makes one a better provider. No textbook or scientific journal, no residency or advanced training, no duration of tenure or expertise can replace the patient’s perspective.

To begin, not all amputee support groups are created equal and not all meetings have similar goals. These groups provide patients with education on topics such as “weight management as an amputee” or workshops such as “how to get up after a fall” or “what to do if you have a blister from your prosthetic.” Other meetings are designed to screen for those having issues that require referrals. However, one thing is common to all amputee support groups that supersedes all other benefits: an intimate social network.

The networking component of amputee support groups allows for new amputees to talk with more veteran amputees. At every meeting, there are always several attendees who express a concern for which they then connect with another amputee who has already gone through similar issues. They sit together, exchange stories, ideas and often phone numbers. It is magical to see this unfold organically. 

I have gathered some noteworthy observations that can help provide physicians with a deeper appreciation for what an amputee support group can uncover. For instance, as a physician, it is difficult to be heard with credibility when discussing in detail what one can expect after an amputation. The preference by far is for an amputation candidate to have these discussions with an actual amputee. For this reason, our centers now commonly put at-risk patients in contact with respected patients that are post-amputation. In some cases, we invite a patient with an initial drainage amputation to come to the support group even before they undergo a definitive completion amputation. The feedback is unanimously and unequivocally positive with increased optimism and more realistic expectations. 

In the clinic, there is often little time to uncover every problem or concern in one visit. Patients relay with astonishing frequency that they feel ashamed to ask “silly” questions that relate to their amputation. I hear comments like, “How can I ask that when the doctor just saved my life?” or “just did this huge complicated surgery to amputate my leg.” In a group setting with other amputees, these patients can open up. I often hear new members say “I thought I was the only one with this problem.” There is power in numbers and a clear sense of engagement toward issues that would otherwise go unchecked.

People with amputations are faced with obvious mobility challenges. Interestingly, the greatest obstacle may not be physical but emotional. It is clear that these patients undergo a complex spectrum of mental and emotional processes. This may include immediate or delayed major depression, denial, or misplaced resignment to be dependent on others or a wheelchair, even if this is not entirely true. The value of amputee support groups is that those who are in these often cyclical hindering phases have a shorter course of tribulation. Any life crisis can impart stress on a relationship. There are few health-driven stressors more “in your face” than a major amputation. In some instances, family and friends are galvanized by a loved one’s amputation, and become closer as a result. Sadly, family members can also completely detach from and abandon the patient. One common theme occurs when a patient lacks the capacity to provide consent and a family member must provide ultimate permission to perform the amputation. This can evoke an intensely strong and deep emotional guilt along with a sense of responsibility for the outcome. 

To combat this, we invite consenting family members for any amputation to discuss how they feel now and how they might feel after the surgery. We coach them through the scenario of their loved one asking who gave consent. What I find most interesting is that the patients almost always understand how dire the acute event was and more quickly come to terms with an undisclosed amputation than do those who consent on their behalf. 

There are so many insights one may gain from being a part of amputee support groups. The member benefits are endless and the sense of community, resilience, and personal growth is immediately tangible. These patients follow up with their health-care providers more regularly and are more likely to discuss real health concerns. From my perspective, they help me navigate in their world and our team consistently makes improvements to our limb salvage efforts as a result. If you have an opportunity to start your own group or volunteer in an existing one, I highly encourage you to do so. Your patients will thank you. 

Dr. Elmarsafi is a fellowship-trained attending physician who is affiliated with the Department of Plastic Surgery at Georgetown University Hospital and Washington Hospital Center in Washington, D.C. He is a member of MedStar Amputee Support Groups at the aforementioned hospitals.