A new study concludes that people with diabetic foot ulcers may wonder whether their ulcers could eventually require leg amputation but often keep their thoughts to themselves. The researchers say that this shows the importance of healthcare professionals creating an accepting space for these thoughts.
Even if leg amputation has not been mentioned, people with diabetic foot ulcers may have many unspoken thoughts about whether this will happen and how it will affect their lives – but keep these thoughts to themselves because they fear what other people will think about them.
A new study shows that people being treated for diabetic foot ulcers who were interviewed about their thoughts on leg amputation are aware of the possibility of amputation without amputation actually being mentioned as a treatment option for them.
The study, published in the International Journal of Qualitative Studies on Health and Well-being, investigated these people’s thoughts and expectations about what actually having a leg amputated would be like, says first author Marie Kragh Nielsen, Clinical Nursing Specialist at the Department of Orthopaedic Surgery, Herlev and Gentofte Hospital. She carried out the study together with Heidi Bergenholtz and Ulla Riis Madsen, Postdoctoral Fellows from the Department of Surgery (Heidi) and the Department of Orthopaedic Surgery (Ulla) at Zealand Regional Hospital, Holbæk, Denmark.
“Our results may show doctors, nurses and other healthcare professionals that people with diabetic foot ulcers may need help in expressing and discussing their thoughts on having a leg amputated because of diabetic foot ulcers,” explains Marie Kragh Nielsen, who says that the participants explain that leg amputation is a taboo subject. This makes discussing the subject difficult for patients, their relatives and healthcare personnel.
“Conveying to healthcare professionals that the topic is taboo is important, since they can help to de-stigmatise it through their contact with the patients,” she says.
Interviews covered four significant themes
Marie Kragh Nielsen and colleagues arrived at the result by interviewing four men and one woman who had such severe diabetic foot ulcers that they were being treated in a wound outpatient clinic, at which there is an awareness that some patients’ situation is so critical that they end up having leg amputation.
“The purpose of the study was to obtain insight into how people with diabetic foot ulcers think about leg amputation, since this knowledge may help to improve the way healthcare professionals prepare patients for amputation. The study aimed to get insights of the thoughts patients can have. It is important that the healthcare professionals take up these issues with the patients to accommodate and support them,” explains Marie Kragh Nielsen.
The researchers used a qualitative study design with semistructured interviews that were analysed using interpretive phenomenological analysis. The interviews were built around questions focusing on patients’ thoughts about possible leg amputation.
“The first question we wanted answered was whether the patients had any thoughts at all on whether amputation would eventually be required. The answers showed that they definitely did,” says Marie Kragh Nielsen.
Being aware of patient’s unspoken thoughts
The interviews elucidated four significant themes:
· “considered – not spoken” – reflections of being alone with one’s thoughts;
· “what people think about me” – concerns about the consequences for social relations;
· “the tough ones and the ones who whine” – considerations about expected self-efficacy; and
· “limitations and opportunities” – thoughts about physical consequences.
“Even if leg amputation is not being planned, having a diabetic foot ulcer can result in diverse thoughts about amputation. The findings indicate that amputation is taboo, which makes the subject difficult for patients to discuss with healthcare professionals and their relatives.
This shows the importance of healthcare professionals being aware of patient’s unspoken thoughts and creating an accepting space in which patients can talk about this and get a more nuanced picture of leg amputation based on knowledge rather than prejudice,” explains Marie Kragh Nielsen.
Leg amputation: self-inflicted punishment
The spontaneous responses from the participants revealed that they were aware that their foot ulcers could lead to leg amputation. One was so convinced that this would happen that he had already removed doorsteps and enlarged the doorways in his home because then he was well prepared for leg amputation.
“The fact that this patient felt compelled to make radical changes in his home long before leg amputation became a reality is thought-provoking, as is the fact that he had not even discussed his thoughts on leg amputation with healthcare professionals,” says Marie Kragh Nielsen.
The responses from other patients indicated that leg amputation may be associated with guilt and shame. For example, one participant said that he considered leg amputation self-inflicted punishment for not taking care of himself while having diabetes.
“He thinks that he has not taken his diabetes into account in his lifestyle. He therefore considers the fact that he eventually risks having a leg amputated to be self-inflicted. These are powerful thoughts to live with – especially since he did not think he could talk to the family or the healthcare professionals about it,” explains Marie Kragh Nielsen.
Not as bad as feared
Remarkably, some patients wondered whether leg amputation might be better sooner than later, since walking with a prosthesis rather than their foot might be easier on the basis that they were not allowed to put weight on the foot because of the ulcer.
“One participant took great pleasure in walking his dog in the woods, but he had not been able to put any weight on his foot for a long time because of his foot ulcer and was therefore considering whether the foot ulcer was a greater obstacle than leg amputation would be. That also emerged through our interviews: an amputation for some might improve their quality of life rather than being hampered for years by a diabetic foot ulcer,” she says.
“Although amputation is not the most thoroughly researched field, previous studies show that leg amputees generally would have preferred to have been better prepared. These studies also substantiate that some people may experience improved quality of life after a leg amputation and that some would have wanted the amputation to take place somewhat earlier. For some, amputation is not as bad as feared – because they get better,” explains Marie Kragh Nielsen, adding that several participants said that they wanted to look normal after leg amputation – and prosthetics, which they would disguise with clothing, would help them to normalise themselves
“The concerns associated with leg amputation could perhaps be reduced earlier if patients could talk more extensively to healthcare professionals or family and friends about the procedure, the time after the amputation and the advantages and disadvantages. However, our study shows that leg amputation being taboo can hinder these conversations,” says Marie Kragh Nielsen.
Creating space for dialogue
She says that two of the participants had actually tried to talk to family and friends about it but felt that it was not something they wanted to talk about.
“When patients finally try to articulate their concerns, they feel that people do not want to talk about it. This viewpoint may contribute to increasing the taboo around leg amputation in accordance with other studies. Managing your thoughts can be difficult if you cannot share them with the professionals who actually know about leg amputation, and several participants also wanted to talk to people who had undergone leg amputation if it became necessary,” explains Marie Kragh Nielsen, emphasising the importance of healthcare professionals avoiding reinforcing the feeling that patients have no one to talk to about it.
“When healthcare professionals speak of leg amputation as worst possible solution, this could substantiate the patient’s own negative perceptions. Healthcare professionals in this situation should perhaps instead listen to the patient’s own perceptions and nuance them and describe leg amputation as a treatment option rather than an emergency procedure,” says Marie Kragh Nielsen, who concludes:
“Of course, not all patients with diabetic foot ulcers should undergo leg amputation. It is about meeting the patient in the patient’s life and situation – and having a dialogue with them about their thoughts, concerns, hopes and desires and understanding what quality of life means to them. As healthcare professionals, we should contribute to creating an accepting space for dialogue and especially to help destigmatise the topic of leg amputation.”