Perceived shared decision-making among patients undergoing lower-limb amputation and their care teams: A qualitative study

Abstract

Background:

Shared decision-making (SDM) is increasingly advocated in the care of vascular surgery patients. The goal of this investigation was to gain a greater understanding of the patient and provider experience of SDM during clinical decision-making around the need for lower-extremity amputation and amputation level related to chronic limb-threatening ischemia (CLTI) in the Veterans Health Administration.

Methods:

Semistructured interviews in male Veterans with CLTI, vascular surgeons, physical medicine and rehabilitation physicians, and podiatric surgeons. Interviews were analyzed using team-based content analysis to identify themes related to amputation-level decisions.

Results:

We interviewed 22 patients and 21 surgeons and physicians and identified 4 themes related to SDM: (1) providers recognize the importance of incorporating patient preferences into amputation-level decisions and strive to do so; (2) patients do not perceive that they are included as equal partners in decisions around amputation or amputation level; (3) providers perceive several obstacles to including patients in amputation level decisions; and (4) patients describe facilitators to their involvement in SDM.

Conclusions:

Despite the recognized importance SDM in amputation decision-making, patients often perceived that their opinion was not solicited. This may result from provider perception of significant challenges to SDM posed by the clinical context of amputation. Patients identified key features that might enhance SDM including presentation of clear, concise information, and the importance of communicating concern during the discussion. These findings point to gaps in the provision of patient-centric care through SDM discussions at the time of amputation.

Introduction

Shared decision-making (SDM) is a collaborative process in which providers and patients formulate a clinical care decision by informing a patient of the evidence-based risks and benefits of their therapeutic options, and identifying their preferences and values based upon their personal outcome priorities.^1,2 It is a multistep process that includes several dimensions, such as establishing a partnership, reviewing the patient’s information, understanding the patient’s preferences and concerns, identifying options and sharing risks and benefits related to those options, negotiating a decision, and agreeing on a plan of action.³ It has been shown to improve multiple domains of care by reducing decisional conflict and improving patient knowledge, satisfaction, and confidence in the decision.^4,5 Shared decision-making is recommended by the Global Vascular Guidelines^6,7 at the time amputation is determined to be necessary. Importantly, patients report wanting to be involved in amputation decision-making,⁸ and their clinical outcomes are affected by the extent to which their outcomes match their expectations.^5,6

There have been no prior investigations specifically evaluating SDM among patients requiring amputation secondary to chronic limb-threatening ischemia (CLTI), although preliminary investigations of SDM have included patient subgroups with peripheral artery disease. These studies suggest that providers perceive SDM may be limited by the complexity of decisions associated with vascular surgery procedures and the high prevalence of elderly patients.⁸ A study evaluating SDM in nonamputation vascular surgery outpatient consultations suggests that the quality of SDM varies between providers and could generally be improved.⁹

The primary goal of this investigation was to gain a greater understanding of patient and provider experiences with SDM during clinical decision-making around the need for lower-extremity amputation and amputation level related to CLTI, perceptions of its relative importance, and potential obstacles and facilitators.

Methods

Setting

This study was conducted in the Veterans Health Administration (VHA) as part of a larger study aimed at developing a patient decision aid and physician decision support tool. Financial Support for this study was provided by the US Department of Veterans Affairs, Office of Research and Development, Rehabilitation Research and Development grant number 1 I01 RX002919R-01. The contents do not represent the views of the US Department of Veterans Affairs or the US Government.

Interview eligibility

Patients

Eligible Veterans were those who (1) received a transtibial or transmetatarsal amputation in the Veterans Affairs (VA) between March and October of 2018; (2) were between 6 and 12 months after operation; (3) had a unilatateral amputation only; (4) had an amputation resulting from diabetes or peripheral vascular disease; and (5) were older than 40 years. Patient exclusion criteria included (1) a diagnosis of dementia; (2) a contralateral subsequent amputation; (3) functional disease; (4) metastatic cancer; (5) body mass index less than 15 or greater than 52; (6) incarceration; (7) insufficient language proficiency to consent to participate; and (8) death before interview. Up to 5,000 patient records were accessed through the VHA Corporate Data Warehouse to identify potential patient participants. Once initial screening identified individuals for each patient group that seemed to meet our criteria, we used a randomized sampling method to select up to 100 potential participants from 3 patient groups (300 total) to approach for this part of study. The 3 patient groups were (1) patients with a transtibial amputation, (2) patients with a transmetatarsal amputation with no revision, and (3) patients with a transmetatarsal amputation with any revision.

Providers

Eligible providers were vascular or podiatric surgeons who perform or consult on at least 5 partial foot or below knee dysvascular amputations each year (self-reported) or physical medicine and rehabilitation specialists who provide rehabilitation care for or consult on at least 5 patients per year with partial foot or below knee dysvascular amputations (self-reported). We used snowball sampling to identify additional providers who may be interested in participating in the study.

Recruitment

Patients

Eligible Veterans were sent recruitment packets (recruitment letter, opt-out postcard, and a copy of the study information statement). Potential participants who had not responded within 2 weeks were contacted by telephone. During the initial call, project staff described the study and asked screening questions to determine final eligibility. Participants were consented over telephone by study staff. The telephone was used because of the diverse geographic location of participants within the United States.

Providers

Veterans Health Administration Directors of the Prevention of Amputation in Veterans Everywhere programs, Regional Amputation Centers, and Polytrauma Amputation National Centers agreed to help identify providers nationwide who met inclusion criteria. Project staff sent recruitment emails to potential provider participants. Interested individuals were screened and consented over the phone by study staff.

Interviews

Patient and provider semistructured interview guides (Appendix 1, Supplemental Digital Content 1, http://links.lww.com/POI/A150) were designed to elicit thick detailed descriptions of participant experiences and perceptions of SDM regarding amputation level.

Interviews were conducted over telephone by an experienced interviewer (S.W., health services researcher), recorded, and transcribed verbatim. Interviews lasted between 30 and 60 minutes. In addition, study staff verbally administered a series of questions to collect information about health status and demographics. Interviews were conducted until saturation was reached.

Analysis

We used an iterative, team based approach to inductive and deductive content analysis to identify themes related to SDM and amputation-level decisions.^10–12 This approach allows for identification of both categorical findings and sufficient abstraction for the development of themes when analyzing multifaceted, sensitive phenomena. Initial deductive code categories were created based on factors related to decision-making, amputation decisions, amputation level, and conversations around amputation-level decisions. Inductive codes were used to identify key thoughts or concepts and were added throughout coding after discussion by team members. Consensus was reached using a team-based approach.¹¹ Two analysts (C.L. and S.W.; anthropologist and health services researcher) independently coded the same 4 transcripts and discussed points of divergence and convergence. Emergent themes were developed through iterative discussion between the analysts (C.L. and S.W.), methodologist (G.S.), and the clinical research team (J.C., A.H., A.T., and D.N.). Atlas.ti 8¹³ was used for data management.

This study was approved by VA Central and local institutional review boards (MIRB 01700; IRBNet # 1587998-12).

Results

We interviewed 22 patients and 21 vascular surgeons, physical medicine and rehabilitation physicians, and podiatric surgeons between March and June 2019 (Tables 1 and 2). We identified 4 themes related to SDM: (1) providers recognize the importance of incorporating patient preferences into amputation-level decisions and strive to do so; (2) patients do not perceive that they are included as equal partners in decisions around amputation or amputation level; (3) providers perceive several obstacles to including patients in amputation-level decisions; and (4) patients describe facilitators to their involvement in SDM.

Table 1.

Patient participant characteristics (n = 22).

Variable	N (%)
Age, years
40–49	1 (4.55)
50–59	4 (18.18)
60–69	5 (22.73)
70–79	11 (50.00)
80–89	1 (4.55)
Race
White	13 (59.09)
Black	7 (31.82)
Latinx	2 (9.09)
Setting
Emergency department	10 (45.45)
Clinical	12 (54.55)
Amputation level
TT with or without revision	12 (54.55)
TM no revision	5 (22.73)
TM with any revision	2 (22.73)
Region
North Atlantic	6 (27.27)
Southeast	4 (18.18)
Midwest	4 (18.18)
Continental	4 (18.18)
Pacific	4 (18.18)

Abbreviations: TM, transmetatarsal; TT, transtibial.

Table 2.

Provider participant characteristics (n = 21).

Variable	N (%)
Specialty
Vascular surgery	10 (47.61)
Podiatric surgery	5 (23.80)
PM&R physician	6 (28.57)
Sex
Female	9 (42.86)
Male	12 (57.14)
Region
North Atlantic	0 (0)
Southeast	6 (28.57)
Midwest	3 (14.29)
Continental	2 (9.52)
Pacific	10 (47.61)

Providers recognize the importance of incorporating patient wishes into amputation decisions and strive to do so

Several providers described the importance of respecting patient wishes during amputation-level decisions. They discussed the need to understand and respect patient opinions.

In this day and age, the consideration of patient wishes is a huge factor. And we need to respect those wishes, if they’re a rational thinking human being and if we feel that they’re making those decisions that are going to be in their best interest.—Podiatric surgeon, female, Southeast

Some providers felt that their role was to equip patients to make their own decision regarding amputation level. They described providing patients with information that could be used to inform patient decisions and highlighted the need for both the patient and provider to agree with the surgical decision. One surgeon described the need for a second opinion in cases where the patient and provider could not reach a mutually acceptable decision,

My thoughts are it’s their body, and I make sure they understand that. My job is to provide them information so that they can make a decision, and that both of us need to be comfortable with the decision. In other words, if they say, “no, I refuse that option,” and I feel the only option that’s going to lead to success, to prevent a further, higher level of amputation or loss of life, then we both agree and we’re good to go, but if one of us doesn’t agree, then they probably need to have a second opinion, or a third opinion, depending on what they need to help them reach a decision and a comfort level with their surgeon.—Podiatric surgeon, male, Pacific

Some providers felt that an interdisciplinary team approach could support patient decision-making. They discussed ways that a team could provide information to enable patients to make the best decisions for themselves.

That’s one thing that helps with the team approach, it’s not a subjective tyrannical response, but more of a thoughtful, synergistic manner that states, “we’re looking at you as a whole individual, and we want what’s best for you. It’s not what I’m saying that’s most important, we have a collective group of professionals who are advising you as an individual who is completely in charge of their body to make the best decision for that body.”—Podiatric surgeon, male, Pacific

Many providers also described the added value of patient participation in amputation-level decisions. They felt that patient participation helped them to understand a patient’s circumstances, which led to collaboration and better decisions.

Ultimately, they’re the end user, right? And I think having them participate in that conversation, you get a lot of valuable information, “no, I can’t do that because I live 3 hours from the nearest prosthetist in my county.” So, you sometimes get these things that you haven’t thought of, that come up. And then you say, “ok, from a barrier standpoint, how do we address this specific barrier versus making the wrong decision for a work around?”—PM&R Physician, female, Southeast

Some stated that engaging in SDM helped them understand patient experiences with amputation, recovery, and grief. One vascular surgeon described,

If we’re really going to make headway and improve amputation care in our patients, we’re going to have to have a greater appreciation of the psychosocial and socioeconomic impacts, but also what the long-term effects of the amputation will be, recognize that the patients are vulnerable for repeat ulceration, repeat wounding, the depression features and anxiety, that often go part and parcel, if not preop, then certainly in the postop period. Understanding the stages of grief that many of the patients go through, frankly, as they lose a part of their body.—Vascular surgeon, male, Southeast

He went on to describe that this understanding of the patient recovery process was critical in helping the patients achieve desirable outcomes. Importantly, a desirable outcome from the patient perspective may not always align with what the provider sees as desirable.

We’re trained to save limbs, so it’s difficult sometimes to come to that decision, and then to broker that decision with your patient. Sometimes we maybe try too hard to save a limb, and it’s harder to a priori, make a designation that maybe the patient is better off with a limb amputation.—Vascular surgeon, male, Southeast

In addition to describing the importance of including patients in the decision-making process, many providers described how they approached conversations about amputation level. In most cases, providers described a process that involved patients in decision-making. One described explaining available treatment modalities and surgical options,

We have to sit with them and explain their options; we go through all of the different treatment modalities that they have, and we also explain the fact that the longer we keep them off of their foot, we use the saying that sitting is the new smoking, so their fitness for surgery decreases significantly. So, coming up with a decision and trying to get them healed and up and moving as fast as possible is critical.—Podiatric surgeon, male, Southeast

Another described the importance of educating patients about potential long-term outcomes and how surgical outcomes might affect their life.

I’m trying to educate my patient as best as I can, to try to let them know the stakes. So that they can not only understand the decision, but the longer-term implication of the decision. Often times I’m trying to educate them to optimize their outcome and I let them know that I’m trying to help them so that we can optimize their long-term chances of success, which, obviously means living, but hopefully living in a somewhat independent manner.—Vascular surgeon, male, Southeast

Several providers felt that patients typically deferred to their medical team’s recommendations. Some felt that patients did not want to participate in the decision process.

[Patients] just want the doctor to make a decision, to decide what’s best for them…the patients that I’m seeing that are in this situation are also the older, the WWII Vets, or even Vietnam Vets. They’re of the generation where the doctor made the decision, the doctor knows the best…—Podiatric surgeon, male, Pacific

Patients do not perceive that they are included as equal partners in decisions around amputation or amputation level

Despite providers recognizing the importance of SDM, most patients did not perceive that they were included in decision-making. This was often because amputation was presented as a necessity and in most cases, there was no conversation about whether or not to amputate or amputation-level options. One patient described a quick decision to amputate due to an infection,

Before the amputation, there wasn’t a lot of conversation about anything. That first day she looked at it and said she might take it off but didn’t, nothing was said about it again until I went back down with the infection after they did that skin graft, and we made that decision to take it off within 10 minutes. So, there wasn’t discussion about the amputation as far as what was involved, what it was going to change, or anything like that. There wasn’t none. It was just a split moment decision to take it off.—ER, Transtibial, Midwest

Several patients described being told that their choice was between amputation and death and they did not necessarily perceive the need for conversation. This was especially true in emergent contexts, but many patients with planned/elective amputations described similar experiences.

Well there wasn’t a whole lot to discuss about it. The doctor told me that he had to take my leg off or else I’d die, because I had gangrene. So, I told him to go ahead.—ER, Transtibial, Southeast

In a few cases, patients described receiving a major amputation without their knowledge.

I had a couple of toes that turned black, I went up to the VA and they looked it over. I signed some papers and when I woke up, I had my leg cut off. It kind of surprised me, I figured they’d just remove a couple of toes, and evidently, they figured it wouldn’t work.—Clinical, Transtibial, Midwest

Similarly, when asked about decisions related to amputation level, most patients did not perceive that they had a choice. They mentioned trying to save as much of the limb as possible, and many stated that they did not know what the amputation level would be until the amputation occurred.

She said she’d take no more than she had to. And she said she wouldn’t know for sure how high she had to go until she went in and seen if the infection had moved up the bones any. But other than that, she said she’d save as much of it as she could.—ER, Transtibial, Midwest

Other patients described being told where the amputation would occur with minimal conversation.

They had a meeting of more than one person, and they make a decision on the stuff that they take [the amputation level] and decide what they should do and what ways to help it get better. And they come back and give me that decision, and I could take it or leave it.—ER, Transtibial, Midwest

Some patients described deferring to their medical team’s recommendations regarding amputation level. They felt that their medical team had more expertise and was better able to determine the appropriate level.

Really, my opinion didn’t matter in my book because of the fact I’m not the one with the medical knowledge to determine how much was enough. So, I couldn’t just say, “let’s just take it off here and quit.” Because if the problem proceeded up past where they took it off, then that’s going to create another problem for me. That’s why I relied on their opinion, where it had to go before, they could quit. That was their decision, they’re the ones that had the knowledge to make that determination.—ER, Transmetatarsal with revision, Continental

A few patients described wanting to be more involved in the amputation-level decision. They felt that more discussion with their providers would have helped them understand the rationale behind amputation-level decisions.

I guess if I could’ve had it in the ankle or just above the ankle, I would’ve rather have had it there than the knee, or at least discussed it, to find out which would be better for me as far as getting a prosthesis right above the ankle or below the knee. […] I would’ve liked to discuss why, and I just assumed because the sore was so bad, that they didn’t want to take a chance of having to do it above the ankle and then having to come back and doing some more. I assumed that they were trying to make sure.— Clinical, Transtibial, Continental

One patient stated that his surgeon did not take his wishes into account when deciding amputation level.

They didn’t pay any attention. It was just one person, the surgeon […] he just kept coming back with that they were going to cut it where they thought it would be the easiest to work with the prosthetic.—ER, Transtibial, Midwest

Another patient described not being given any options regarding amputation level. However, when the initial surgery failed to heal, he described asking his care team to perform the next amputation at a level that would avoid future surgeries.

And there really wasn’t a lot of options they gave me, they just said, “this is what we have to do.” And I accepted it as it was stated. And then my toes started healing after they removed them, and then they said, “wait a minute, we don’t like the looks of this, we’re going to have to take it off below the knee,” at which time I told them, and I think I told them after the toes, “take off what you’ve got to take off, let’s get this over with, I’m getting tired of living in the rehab over here.” So, I had my leg removed below the knee, healed, and went home. I don’t remember a lot of options being given; I was just told that this has to happen.—ER, Transmetatarsal with revision, Continental

In addition to discussing a lack of involvement in decision-making, some patients described a lack of communication around the reasons for amputation or a lack of sensitivity from providers that made it difficult for them to engage in the decision process. Some patients talked explicitly about not only the content and extent of communication in relation to their involvement but also the impact of the quality of the communication. Some felt that their medical team did not show concern or provide background information about the reasons for amputation.

The biggest concern I had was the attitude of the doctors themselves. Those doctors, I wouldn’t give you 2 cents for them. I’m not very happy with the way they acted, the way they talked, the lack of concern they seemed to have. It was either this way or you’re going to die from infection. […] They had no explanation as to why I got infected, or how I got infected. They just kind of shrugged their shoulders with a blank look on their face, like, “we don’t know, things happen, and it happened to you.”—ER, Transtibial, North Atlantic

Others described communication that they felt was not adequately sensitive. One patient described,

After she did the slicing motion. […] I asked her, I said, “where are we talking about?,” I didn’t know anything about a below the knee or above the knee type of amputation, I said, “what are you talking about?,” and she pointed to below the knee, probably half way up my leg. My point is that there are better ways to discuss an amputation with patients.—Clinical, Transtibial, Pacific

He went on to state that his surgeon could have had a better attitude toward communicating with him.

I don’t expect doctors to be completely pleasant with you all of the time, but there are times when you’re going into something like this, especially when she knows by looking at an x-ray, or whatever she looked at, that it was going to happen. She could’ve had a better attitude towards it, and, she didn’t. She just gave a slicing motion, “meh, what do I care? It’s a leg, I’ll just go and slice it off.” She didn’t say that, but that was the intent, with her hand, “we’ll take it and cut it off.” It’s just a dramatic response to me, and as far as I’m concerned, sitting there and hearing that, it was quite upsetting.—ER, Transtibial, North Atlantic

Importantly, a few patients did describe being engaged in the decision to amputate. One recounted his doctor presenting multiple options and that amputation sounded like the best decision.

But, he discussed it with me and it pretty much floored me, that I was going to have to have my foot removed. Because there is an option to go in and clean it out, and try to fix it, but he said the problem with that is within 2 or 3 years, I’d have to have it cut off anyway. So I thought that was not a good decision, and I went with having it cut off at that time.—Clinical, Transtibial, Continental

The same patient described his participation in the amputation-level decision, and the factors and information that helped him choose a transtibial amputation over a transmetatarsal amputation.

They did give me some options, and I chose to go with this one because my options for prosthetics opened up. If I had gone any lower I would’ve had a difficult time, I guess if they would’ve cut it right at the ankle they could just go from the ankle to the foot, but, I don’t know, it kind of limited me to other things; comfort, different styles and things like that. I looked online, I looked at different prosthetics and things.—Clinical, Transtibial, Continental

Providers perceive several obstacles to including patients in amputation-level decisions

Providers discussed several barriers to patient participation in amputation decisions. Many of the barriers were related to health status characteristics of this patient population including difficulties with hearing, vision, and cognitive function. The clinical and emotional context associated with the need for amputation including illness acuity/severity, urgency, psychological distress, and complexity of the decision may all adversely affect effective patient participation in SDM.

I guess if the patient is deaf and can’t hear, I’m screaming, and they have limited cognitive ability to fully hear and understand what I’m about to tell them.—Podiatric Surgeon, male, Pacific

Providers also stated that it is difficult for patients to participate in amputation decisions when they are acutely ill and need an emergency amputation.

I think that the difficulty in having those conversations at the bedside is that the patient is acutely ill, and often taken to the Operating Room as a life-saving measure. And that’s in our diabetic and vascular patients because they end up getting gangrene and they’re basically presented with a choice, that they could either suffer a significant infection or loss of life, or they have to undergo amputation.—PM&R Physician, female, Continental

In some emergency situations, providers described patients being pressured to make decisions when they were unable to understand their options.

I think when surgeons are pressuring them to make a decision, I think lack of understanding of all of their options. Maybe lack of understanding of the disease process. If you come in and you’ve got a raging infection, you could be delirious and not be able to even give informed consent because your life is in immediate danger. So, all of those can interfere with the patient’s ability to participate in the process.—PM&R Physician, female, Continental

They also described the emotional toll of amputation as a barrier to patients’ abilities to make clear decisions. Some described patients being overwhelmed by data related to an emotionally challenging decision.

I think it’s because of the complexity of the decisions, and the pros and cons, which, you can list so many. It can be a little bit of data overload for the patient. And also, they’re overwhelmed, just with the idea of, “I need to get an amputation, now I need to pick my amputation.” It’s sort of like the pick your poison sort of question, you know? It’s like, they don’t want to make that choice.—Vascular Surgeon, male, Southeast

Others felt that patients might defer to their doctor because they are stressed and overwhelmed.

I think sometimes people are really overwhelmed and can’t make, or have trouble kind of processing the whole story, or all of the different issues. Sometimes we’ll get patients that just say, “whatever you think is best doc,” because, I don’t know. Who knows why they say that, really? But it seems like it might be that they can’t handle it all, it’s too stressful of a situation.—Vascular Surgeon, female, Pacific

Patients describe facilitators to their involvement in shared decision-making

Despite provider-reported barriers to SDM, patients talked about ways to facilitate their participation in the decision process, as well as the quality of the decision process. Some described respectful, supportive communication around the need for amputation and amputation level.

He was kind, he was understanding, he showed concern for my well-being. He didn’t talk like he was arrogant, if you know what I mean. A lot of doctors, when they talk to you, it’s like they’re above you. I appreciated the fact that he was on my level, and that really made a big difference when he was discussing everything.—Clinical, Transtibial, Continental

Some patients felt that working with their care team to explore options facilitated their involvement in the amputation decision. One described his team taking a collaborative approach to help him make a decision.

But they didn’t force me, they didn’t push it, nothing like that. I didn’t have anyone there saying, “you’ve got to do this, or else.” They were working with me and giving me the option of making a decision. I appreciated that.—Clinical, Transtibial, North Atlantic

Another patient felt that his team provided the information that he needed to make a good decision. He described that the perception his care team was openly sharing information made him feel good about the decision process.

I was very involved in the decision. In fact, the decision was all mine. I just asked for all of the information and they gave it to me so I could make a competent decision. I was very pleased that they really didn’t hold anything back, if I wanted to know it, they told me. They were very open about everything. I told them not to beat around the bush, I wanted to know every good, bad, ugly, whatever. Because I needed to make a good decision about this. And they gave it to me, they were very open about it, I can’t be more impressed or pleased with the way they handled things.—Clinical, Transtibial, Continental

Still another patient described the importance of receiving information in a forthright and honest manner, to help him make a decision.

There’s one thing I’ve always had a problem with is when someone doesn’t tell me the truth. Tell me the truth, don’t try to sugar coat it, don’t try to come around me this way or that way, just tell me the cold hard facts. I can better make a decision based on something that fits my temperament. So, I was involved as much as I wanted to be. I knew the right questions to ask.—Clinical, Transtibial, North Atlantic

One described feeling involved in the decision but ultimately relying on his care team to decide the best course of action.

If they’re telling me, “here’s where we have to go,” then I have to kind of say, “ok, you’re right, if that’s what has to go, let’s go, let’s take it there.” So, I can only be involved in that decision to a point, then I have to rely on them.—ER, Transmetatarsal with revision, Continental

Discussion

The goal of this study was to understand patient and provider perceptions around SDM in the context of planning treatment at the time of an amputation. The SDM process in the context of planning an amputation includes the patient and provider sharing goals and information to come to a mutually acceptable decision around the need to amputate or amputation level. Our findings suggest that although providers acknowledge the importance of SDM, they encounter several barriers. Patients do not always perceive that SDM occurs but feel that simple communication strategies could facilitate SDM.

Our finding that providers are aware of the importance of involving patients in decisions, but feel there are obstacles to doing so, is consistent with research evaluating SDM in other clinical contexts.^2,14–16 Providers in our sample communicated the importance of educating patients about treatment options, helping them understand the risks and benefits of different options and respecting their wishes. They perceived benefits of engaging patients in SDM, including gaining greater insights into their patients’ view of the psychosocial and socioeconomic impacts of amputation, and the potential obstacles to their return to function. However, providers communicated 2 primary obstacles to engaging in SDM. First, the acuity of a patient’s illness could confound their ability to integrate the necessary information to participate in SDM. This is because the decision may need to be made quickly, the patient may be ill to participate in decision-making, or the acuity may dictate the decision. Second, the emotional impact of learning of the need for amputation might also prevent patient participation in the decision. These findings align with previous studies reporting that patient emotional state, the quality of information, the gravity of the decision, and the time in which the decision must be made are common barriers to SDM.

Although providers discussed the importance of SDM, patients in our sample did not always perceive that SDM occurred before amputation. They often described that communication focused on the need for amputation, and not choices about other treatment options or amputation level. Some patients recalled that their provider communicated a specific amputation level that would be performed, or the provider stated that they would preserve as much of the limb as possible, but their preferences were not included in the decision-making. These data reflect prior published data on patient experience in decision-making related to peripheral artery disease. In one study, 50% of patients felt that they were given only 1 treatment option without an alternative choice.⁸ Patients also acknowledged that sometimes there may not be an opportunity for choice because the alternative was sepsis or death.

Patients varied in their desire to be involved in decision-making. Some expressed a desire for greater involvement, whereas others felt that they needed to rely on the expertise of the provider. Specifically, patients wanted to be included in the decision of whether to amputate, or to at least understand the basis for that decision. Some expressed that although they wanted to be included, ultimately the trusted their care team to present them with the best option based on their medical expertise and experience. This is consistent with recent quantitative findings that 95% of patients agreed or strongly agreed with wanting to be involved in decision-making along with their surgeon, whereas only 60% agreed with or strongly agreed with the statement that they wanted their surgeon to make the decision alone.⁸ Some patients described communication strategies that might facilitate their participation in conversations about amputation. Consistent with previous research in SDM, patients emphasized that receiving clear, accurate information from their care teams helped them make decisions.¹⁵ Importantly, they also noted the importance of providers speaking to them with care and concern.

The implications of these findings in the context of SDM and amputations secondary to CLTI are significant. There is extensive literature that supports the benefits of SDM in enhancing outcomes.^3,4 However, the extent and effect of SDM in vascular surgery populations has received limited study, despite consistent discussion in the literature that it is important.^10,17,18 Our findings support the need for improved SDM in amputation decision-making. There is a mismatch between the provider view of the importance of patient involvement in amputation decisions and the patient viewpoint that there was essentially no discussion of treatment options. It seems that providers come to the amputation discussion with a clear decision about the need for amputation and the necessary amputation level to optimize outcomes, and this is what is presented to patients. It is unclear what factors contribute to this mismatch, but it may be related to the previously described provider view of obstacles to SDM. What has been termed the “silent misdiagnosis of patient preferences” may also be a contributing factor.¹⁸

The findings of this investigation also suggest that decision support tools and patient decision aids may be helpful in bridging the gap between patient and provider perceptions of SDM. Such tools could facilitate discussion of treatment options, their risks and benefits, and encourage patients to communicate their goals, values, and priorities right at the point of care.^17,19

This is a qualitative study and the findings should be interpreted within the context in which they were collected. All patient participants were male Veterans, and the experiences of women or non-Veterans may be different. Similarly, the experiences of VHA providers may not reflect those of providers in other health care settings. In addition, provider and patient participants were not recruited as pairs, and as a result, their recollection of events is not tied to each other. This research did not evaluate every facet of SDM in the amputation context, but focused on specific components. Amputation for CLTI occurs in a number of clinical scenarios, and the goals of this investigation were to gain an understanding of a broad perspective about SDM and amputation. Additional work should be done to understand SDM in more specific amputation contexts such as amputation in the critically ill patient where the mortality risk is high.

Conclusions

Despite the recognized importance of patient-centered decisions and SDM in amputation decision-making, patients often reported inadequate participation in the decision-making process. This may in part be related to provider perception of the significant challenges to SDM posed by the clinical context of amputation. Patients identified key features that might enhance SDM, including being presented with clear concise information and the importance of communicating concern during the discussion. These findings point to the gaps in the provision of patient-centric care through SDM discussions at the time of amputation. Tools such as patient decision aids and/or decision support tools have been shown to enhance SDM and have been advocated for clinical care communication in vascular surgical conditions.