“It’s Either Have Surgery or Die”: How Patients Perceive the Choice to Undergo High-Risk Abdominal Surgery for Cancer

Abstract

Objective:

To examine how patients undergoing high-risk abdominal cancer surgery perceive the decision to proceed with surgery, particularly regarding whether surgery is experienced as a choice or a perceived necessity.

Background:

Patients considering high-risk abdominal cancer surgery face decisions about whether or not to proceed with surgery, yet prior work suggests that patients may not fully perceive surgery as a choice. How patients make sense of surgical decisions remains poorly understood.

Study Design:

A qualitative study was conducted using semi-structured interviews with adults scheduled for or recently undergoing curative-intent abdominal cancer surgery at 2 academic centers from 2023 to 2024. Thirty-four participants completed 45- to 60-minute in-depth interviews exploring expectations, decision-making experiences, and perceptions of surgical choice. Transcripts were deidentified, coded by a multidisciplinary team, and analyzed using qualitative content analysis informed by grounded theory techniques, with iterative content mapping to identify cross-cutting themes.

Results:

Participants described a continuum of perceived choice. Some recalled surgeons explicitly offering options and felt they were making an intentional choice, although others viewed surgery as technically optional but effectively unavoidable given a perceived lack of meaningful alternatives, their desire for a cure, or strong recommendations from clinicians or family. A subset reported no perceived decision at all, describing surgery as a predetermined step or an event that simply happened. Across categories, patients frequently equated surgery with survival, which shaped whether alternatives felt viable. Surgeon communication and patient perception did not consistently align, as explicit options did not always translate into a perceived sense of agency.

Conclusions:

Patients considering high-risk cancer surgery often perceive limited or no choice, even when surgeons describe options. Recognizing how patients interpret choice may help refine shared decision-making approaches and guide the development of communication tools for complex surgical decisions.

INTRODUCTION

Shared decision-making (SDM) is considered a key component of patient-centered care and provides a structure to support patients and clinicians in making joint healthcare decisions that align with the patients’ values, preferences, and goals.^1–3 In theory, SDM empowers patients to actively participate in decisions, particularly in complex clinical contexts such as cancer surgery, where they must weigh benefits, risks, and anticipated effects on both quality and quantity of life.⁴ In practice, the realities of decision-making in surgical cancer care often diverge from this ideal. In a study of 781 patients receiving outpatient care across 18 medical specialties, patients reported that, despite a preference for involvement in decision-making, their experiences were often less collaborative than they desired, with decisions frequently driven by the clinician or the perceived urgency of the clinical situation.⁵ This disconnect between preferred and actual roles can leave patients feeling marginalized or overwhelmed.⁶ Importantly, patient engagement and autonomy are fundamental to SDM, yet the perception that surgery is a choice, rather than an obligation, is not inherent. In high-risk cancer surgery, patients may perceive surgery as a necessary step toward survival, even when alternatives are discussed or decisions are explicitly framed as choices.⁷

This perception gives rise to what has been termed “nonchoice” decision-making, which describes situations where patients perceive a lack of meaningful options, viewing certain treatments, such as cancer surgery, not as elective decisions but as necessities without viable alternatives.⁸ Few studies have rigorously examined the phenomenon of “nonchoice” decision-making.^8,9 This lack of perceived choice has been shown to influence patient satisfaction, anxiety, and their overall care experience.^6,10 Furthermore, the interplay between surgeon and patient autonomy in these contexts is complex and nuanced. Although surgeons weigh clinical judgment and patient goals, preformed clinical decisions, national guidelines, and systemic factors may limit genuine shared engagement.^11,12 As such, a critical gap exists in understanding how choice is experienced and navigated by patients considering high-risk cancer surgery, and what this means for the application of SDM frameworks in surgical practice.³

To address these gaps, this study aims to explore the lived experiences of patients facing high-risk abdominal surgery for cancer and how each patient individually perceived the choice regarding the decision to proceed with surgery. Specifically, this research highlights the phenomenon of perceived nonchoice and seeks to deepen understanding of how SDM is conceptualized and operationalized in contexts where options may be limited. Ultimately, this work aims to inform more nuanced models of decision-support that recognize the complexities and realities of surgical cancer care.

METHODS

We conducted a qualitative study using individual in-depth interviews to examine how patients with cancer form expectations about high-risk abdominal surgery, what factors influence those expectations, and how those expectations shape decision-making, preoperative preparation, and the experience of recovery. Interviews were collected as part of a broader qualitative study focused on patient expectations surrounding high-risk abdominal cancer surgery. Findings specific to expectation development and how expectations impact the experience of surgical recovery have been submitted for publication and are currently under review. For this study, we report findings specific to patient perceptions of choice as related to the decision to pursue surgical intervention for cancer. This study was reviewed and deemed exempt by the institutional review boards at Johns Hopkins University (IRB-00399721; approved September 19, 2023) and the University of Alabama at Birmingham (IRB-300012566; approved April 15, 2024).

Participants and Setting

Patients were eligible for inclusion if they were at least 18 years of age and were scheduled for or had recently undergone curative-intent abdominal surgery for cancer at 1 of 2 academic medical centers. Eligible procedures included high-risk abdominal oncologic operations performed with curative-intent.¹³ Participant demographics and clinical characteristics, including procedure categories, are summarized in Table 1. Participants were identified by screening surgical oncology operative schedules for high-risk abdominal cancer operations that had been completed within the prior 3 months or were scheduled within the subsequent 6 weeks between September 7, 2023, and December 17, 2024, across both participating institutions [Johns Hopkins Hospital (2023) and the University of Alabama at Birmingham (2024)]. Eligible participants were contacted by telephone using contact information available in the electronic medical record and were invited to participate using a standardized recruitment script. Purposive sampling was used to ensure a range of patient perspectives, with case type and participant race and ethnicity informing recruitment efforts. Interviews were scheduled based on participant preference and availability. Sample size was set a priori based on established principles of thematic saturation.^14,15

TABLE 1.

Participant Characteristics (n = 34)

Characteristic	n (%)
Age, y	Mean = 58.5 (range 31–85)
Gender
Female	18 (52.9)
Male	16 (47.1)
Race/ethnicity
White	19 (55.9)
Black	9 (26.5)
Asian	3 (8.8)
Declined	2 (5.9)
Other	1 (2.9)
Marital status
Married	19 (55.9)
Single	4 (11.8)
Divorced/widowed	11 (32.4)
Religion
Christian	24 (70.6)
None	10 (29.4)
Procedure category
Pancreatic resections	14 (41.2)
Hepatic resections/ablations	7 (20.6)
Colorectal/small bowel resections	4 (11.8)
CRS-HIPEC*	6 (17.6)
Gastric/upper GI resections	1 (2.9)
Multivisceral resections	2 (5.9)
Interview type
Preoperative	18 (52.9)
Postoperative	16 (47.1)

Demographic and clinical characteristics of participants included in qualitative interviews (n = 34).

^*CRS-HIPEC – cytoreductive surgery with hyperthermic intraperitoneal chemotherapy.

Data Collection

All participants provided verbal informed consent to participate in semi-structured, audio-recorded interviews that were conducted by telephone or teleconference based on participant preference. Interviews explored patients’ expectations about high-risk cancer surgery, including anticipated symptoms and recovery, how expectations were shaped by clinical and social interactions, and how participants experienced and understood the process of deciding to undergo surgery, including their perceived sense of choice, ownership, or inevitability. The interview guide was developed by the study team and was derived from prior literature on macrocognition and naturalistic decision-making^16–19 and prior pilot work led by members of the investigative team.²⁰ The full interview guide is provided in Appendix 1. Interviews were conducted by a single investigator (K.K.), with expertise in surgery, qualitative research, palliative care, and ethics, and lasted approximately 45 to 60 minutes. Audio recordings were professionally transcribed verbatim and de-identified before analysis.

Data Analysis

Qualitative content analysis was employed to examine patterns in how participants described perceptions of choice and nonchoice in surgical decision-making. Although the analysis was informed by grounded theory techniques, including inductive coding, constant comparison, and iterative codebook development, the aim was not theory generation.²¹ Coding was performed using the NVivo software (version 15; Lumivero, Denver, CO, USA), a qualitative data analysis program developed by Lumivero (formerly QSR International). All 34 transcripts were reviewed independently by 2 investigators (K.K., J.F., J.J., and A.A.), representing backgrounds in surgical oncology, qualitative research, palliative care, and ethics (K.K.); general surgery (J.J., senior resident and A.A., junior resident), and medical education (J.S., a medical student). One investigator (A.A.) had prior experience with qualitative coding, which informed early stages of code development. An initial codebook was developed inductively by the senior author (K.K.), who also conducted the interviews and brought familiarity with the data and interview context to the initial coding framework. The coding team met regularly to compare interpretations, review line-by-line coded excerpts, resolve discrepancies through consensus, and add to or refine the initial codebook. Initially, each team member independently reviewed a subset of transcripts (approximately 4–5 each), after which the team reconvened to discuss early codes and refine the codebook. Throughout the analysis, themes were iteratively revisited and refined as investigators reexamined transcripts and compared interpretations, particularly in areas of conceptual overlap such as distinctions between perceived choice and inevitability. Using content mapping and conceptual diagramming, supported by visual mapping software (LucidSpark), the team identified relationships among codes, developed higher-order themes, and explored patterns in how expectations influenced perceptions of choice.²²

RESULTS

Participant Characteristics

Participant demographics and operative characteristics are summarized in Table 1.

Across interviews, perceptions of choice were shaped by 3 interrelated influences, including how surgeons communicated options, how patients emotionally interpreted the situation, and the social context surrounding the decision. These factors interacted in ways that either reinforced or diminished patients’ sense of agency when considering surgery.

Surgeon Communication and the Framing of Surgical Choice

Though surgeon behavior was not directly captured, patients described varied experiences with how surgeons communicated about surgery. Some patients recalled surgeons explicitly presenting surgery as an option or actively engaging them in the decision-making process, one 41-year-old woman with pancreatic adenocarcinoma noted, “I think I was given options… we could do surgery right now, or we can wait and do chemo first.” Others, however, noted that alternatives to surgery were not offered or discussed. A 31-year-old man with intrahepatic cholangiocarcinoma explained, “I don’t feel like I was seriously given other options. I don’t even know if there are any other options.” Still, others perceived the discussion as clear and non-negotiable. One 42-year-old woman with anal squamous cell carcinoma recounted, “Basically, he said there’s no option but to have the surgery because if I don’t have the surgery, I will die with the cancer and stuff.” See Table 2.

TABLE 2.

Spectrum of Perceived Patient Choice in Surgical Decision-Making

Theme	Subtheme	Illustrative Quotes
I had a choice	The surgeon made it clear it was my choice	“[The surgeon] made it very clear that I had two options. I could either do what you doctors call a resection, or I could wait and see what happens to it.” (Participant 14, 77-year-old female, preoperative interview)
		“[The surgeon] wasn’t very pushy about it. [The surgeon] even said, ‘If you don’t want to do it, don’t do it.’” (Participant 30, 36-year-old male, postoperative interview)
		“I felt like [the surgeon] left it in my hands… I was like ‘It’s a no-brainer.’” (Participant 30, 36-year-old male, postoperative interview)
		“It was always, this is your choice… But it was clear that I wasn’t going to make that choice. It was clear to me from the beginning that if this was the only path to getting out of this and not be dead in six months, that I was going to do it.” (Participant 21, 78-year-old female, postoperative interview)
		“At every conversation there was, you can obviously not do it, but that was never a choice for me.” (Participant 21, 78-year-old female, postoperative interview)
	I recognized on my own that I was being asked to intentionally choose between surgery and no surgery	“It’s my decision. Nobody forced me into this.” (Participant 27, 61-year-old female, preoperative interview)
		“Oh yeah, I could have said no, but why would I?” (Participant 11, 42-year-old female, preoperative interview)
		“I wanted to have surgery, so when it was brought up, great, it’s good we’re all on the same page.” (Participant 22, 41-year-old female, preoperative interview)
		“I could choose not to have the surgery… there was that option there of just more aggressive chemo, going that route.” (Participant 16, 41-year-old male, preoperative interview)
		“After doing some of my own research, once I realized how serious my condition was, I kind of felt that it was in my best interest just to have the surgery.” (Participant 30, 36-year-old male, postoperative interview)
		“I honestly did not want to have the surgery, but I felt if I didn’t have the surgery, I would probably have a better chance at survivin’ with havin’ the surgery.” (Participant 8, 65-year-old female, postoperative interview)
		“My thought was that surgery was the best option to try to get resolution.” (Participant 5, 78-year-old male, preoperative interview)
		“Once we got into the discussions about having surgery, there wasn’t a hesitation or a question. It seemed like that was the most viable course of action.” (Participant 5, 78-year-old male, preoperative interview)
The choice was only theoretical	Surgery felt inevitable	“I feel like it was unavoidable to have to have the procedure.” (Participant 19, 54-year-old male, postoperative interview)
		“I don’t want the surgery…but this is my lot at the moment, so I want the mass removed. I want to feel better and if this is the kind of surgery that has to take place, then it has to take place.” (Participant 27, 61-year-old female, preoperative interview)
	I felt there were no meaningful alternatives	“It’s either have the surgery or die, point blank.” (Participant 12, 75-year-old male, preoperative interview)
		“I knew that I had to have it, otherwise I wouldn’t be cancer free. And it felt like I didn’t really have a choice if I’m going to go on living.” (Participant 34, 59-year-old female, postoperative interview)
		“Like I said, I don’t think we ever considered the option of not having surgery. There was never really anything that crossed our mind. I didn’t see any reason not to, basically.” (Participant 16, 41-year-old male, preoperative interview)
		“I realized that would be in my best interest, long-term, to just have the surgery done.” (Participant 30, 36-year-old male, postoperative interview)
		“Basically, he said there’s no option but to have the surgery because if I don’t have the surgery, I will die with the cancer and stuff.” (Participant 11, 42-year-old female, preoperative interview)
		“I don’t think it was really even much of a question we were kinda, ‘Well, it’s what we have to do. It’s what I’m gonna have to do,’ ’cause the other option—There really wasn’t another option, or just let it just fester in there and regular chemo probably wouldn’t get rid of it.” (Participant 2, 55-year-old female, postoperative interview)
		“What would I have done? What is my alternative? How would I personally frame my alternative would be like, I stay on this chemo and wait to die?” (Participant 28, 31-year-old male, preoperative interview)
		“I’m not going to just leave it here when I’ve been told by two different doctors that it is operable, right?” (Participant 27, 61-year-old female, postoperative interview)
	I felt external pressure to have surgery	“Each one of them said his bit and once you’ve got outvoted [I said] I guess I’ll have the surgery.” (Participant 18, 64-year-old male, postoperative interview)
		“They had a family meeting, and all the family women were there, and me, and it was clear that everyone wanted to be in control. Everyone wanted to say how this was going to go, and there were some people who were stronger voices than others in terms if they were more domineering.” (Participant 21, 78-year-old female, postoperative interview)
		“I have a cousin who’s a physician, and so he read me off these statistics and he said, you got to have surgery, and my daughter said you have to have surgery.” (Participant 21, 78-year-old female, postoperative interview)
I had no choice	I did not experience this as a decision	“As far as I’m concerned, there was no decision to be made. It was there, and ready to go, and that was just it” (Participant 12, 75-year-old male, preoperative interview)
		“I don’t guess I was really ever—to me, personally, there was never really a decision to make. It was just this is what we gotta do. This is what we’re gonna do.” (Participant 16, 41-year-old male, preoperative interview)
		“I had no decision. It was, this is what has to happen. It was no decision. It was this is what we’re going to do. I wasn’t asked, do you want to have it removed? It was this is what we are going to do. A care plan was already in motion from day one.” (Participant 32, 54-year-old female, preoperative interview)
		“It was just a decision of when are we gonna do it? … It wasn’t a decision of are we going to do it.” (Participant 2, 55-year-old female, postoperative interview)
		“I don’t think I had any other option.” (Participant 19, 54-year-old male, postoperative interview)
		“There really wasn’t much choice. It’s not like you have a choice in this, or I didn’t have a choice in this, and so I just decided I was going to put one foot in front of the other and cancer what surgery was going to be all about.” (Participant 21, 78-year-old female, postoperative interview)
		“I don’t have a choice. This is gonna happen, and I don’t research it. I think I’m afraid of what I’m gonna find.” (Participant 11, 42-year-old female, preoperative interview)
		“The doctor was saying, you can live with a cancer on a very uncertain basis, or we can take a step that would certainly give you greater longevity and by the fact that this was the word that he used, that might in fact cure you. That’s not a choice. At least not from my point of view.” (Participant 24, 75-year-old male, preoperative interview)
		“I don’t feel like surgery was a choice. I didn’t have a choice…This is my end game to get rid of cancer.” (Participant 34, 59-year-old female, postoperative interview)

Additionally, several patients stated that, although they were aware a decision was being discussed, they preferred to defer the decision-making to their surgeon. This preference reflected trust in surgical expertise or discomfort with making a high-stakes medical choice. A 41-year-old woman with goblet cell carcinoid explained, “I was just going to do what they told me to do,” whereas a 41-year-old man recovering from a liver resection noted, “I trusted them to make a decision on whatever’s the best way to handle the situation.” For some, the magnitude of the decision contributed to this preference; as described by a 41-year-old woman recovering from a Whipple procedure, “I would have just preferred if they decided, because it’s such a massive decision to make given your lack of experience.”

Patient Perception of Surgery as a Choice or Nonchoice

Patients described a spectrum of experiences regarding whether surgery felt like a decision. These dynamics are further illustrated in Tables 2–4 and outlined below.

TABLE 4.

Illustrative Quotes by Surgeon Communication and Patient Perception

	Surgeon Explicitly Offered a Choice	Surgeon Did Not Explicitly Offer a Choice
Patient perceived a decision	“[The surgeon] said, ‘But the decision is up to you,’ and I said, ‘I’ll take the surgery.’” (Participant 24, 75-year-old male, preoperative interview)	“It was all my decision…but neither hospital offered me anything but the Whipple.” (Participant 27, 61-year-old female, preoperative interview)
	“[The surgeon] gave me five choices. The first one being, I didn’t have to have it if I didn’t want it.” (Participant 27, 61-year-old female, preoperative interview)	“Oh yeah, I could have said no, but why would I?” (Participant 11, 42-year-old female, preoperative interview)
Patient perceived no decision	“At every conversation there was, you can obviously not do it, but that was never a choice for me.” (Participant 21, 78-year-old female, postoperative interview)	“I didn’t really make the decision…they were like, this is the plan, this is what we do.” (Participant 24, 75-year-old male, preoperative interview)
	“I felt like [the surgeon] left it in my hands… I was like ‘It’s a no brainer.’” (Participant 30, 36-year-old male, postoperative interview)	“I had no decision. It was, ‘this is what has to happen.’ It was no decision. It was this is what we’re going to do. I wasn’t asked, do you want to have it removed? It was this is what we are going to do. A care plan was already in motion from day one.” (Participant 32, 54-year-old female, preoperative interview)

Representative quotations illustrating how patients described perceptions of choice within each quadrant of the conceptual matrix. Quotes correspond to combinations of the surgeon’s explicitness and patient perception described in Table 3.

I Had a Choice

Some patients recalled receiving explicit communication that surgery was optional and understood that they were being asked to decide. One 60-year-old woman with pancreatic cancer explained, “Could I have said no? Yes, I could have, but the way he explained it made me feel comfortable with what he was gonna do, and so therefore I was weighing my odds.” Others described surgeons who clearly articulated alternatives, which reinforced their sense of agency. A 36-year-old man with pseudomyxoma peritonei recalled being explicity offered multiple paths: “I feel like [the surgeon] left it in my hands… ‘If you want this, we will do it. If you want to wait and you want us to monitor you, we will.’” Other patients independently recognized that they were making a deliberate choice, even if alternatives were not emphasized. These individuals acknowledged that another course was technically possible but ultimately viewed surgery as the option they chose. A 41-year-old woman with colon cancer noted, “I wanted to have surgery. When it was brought up, great, it’s good we’re all on the same page.” Similarly, a 41-year-old man with liver cancer stated, “I could choose not to have the surgery…there was that option there,” though they still proceeded because they believed it was in their best interest.

The Choice Was Only Theoretical

Many participants described surgery as unavoidable, often due to the seriousness of their diagnosis and their desire for a cure. One 54-year-old man with liposarcoma described, “I feel like it was unavoidable to have to have the procedure…it’s been hard.” Another participant, a 54-year-old woman with liver metastases, explained, “I know it’s something that has to happen. So what can I do?” For some, perceived inevitability was formed by the way the surgery was described to them by their surgeon. A 70-year-old man with gallbladder adenocarcinoma stated, “It turns out I had to have the surgery.” Several patients acknowledged that a theoretical choice existed but found the alternative unacceptable or noncurative. Participants often articulated a strong separation between options, with a 75-year-old man with liposarscoma stating, “It’s either have the surgery or die, point blank.” Another patient, a 70-year-old man with gallbladder adenocarcinoma, noted, “You have to – chemo alone wouldn’t get rid of it. You’d have to have the operation.” A 41-year-old with goblet cell carcinoid shared, “There was never any question of not having the surgery…so that I could live.” Even when alternatives were mentioned, patients frequently perceived them as nonviable given their goals for survival, as a 41-year-old woman with pancreatic adenocarcinoma shared, “I guess it wasn’t really even much of a question.” For some, the decision was shaped by strong opinions from family or the broader care team, which narrowed their perceived decision space. Although, these individuals noted that they could have refused surgery, the social environment made declining feel unrealistic or unsupported.

I Had No Choice

A subset of participants described surgery as something that simply happened, without active participation or a sense of deliberation. One 75-year-old man with pancreatic cancer explained, “As far as I’m concerned, there was no decision to be made. It was there, and ready to go, and that was just it.” A 54-year-old man with liposarcoma echoed this sentiment, stating, “I don’t think I had any other option,” while a 42-year-old woman with anal squamous cell carcinoma described, “I don’t feel like I still have an option. The only box there is to check is to do it.” These individuals described a predetermined care trajectory in which neither the surgeon framed nor the patient perceived surgery as a choice. Additional participants described a predetermined course of care. For example, a 54-year-old woman with liver metastasis described, “a care plan was already in motion from day one.” Some participants reported withdrawing from the decision entirely, with a 42-year-old woman recovering from an abdominoperineal resection explaining, “I don’t have a choice. This is gonna happen, and I don’t research it.”

The Intersection of Surgeon Communication and Patient Perception

The intersection between surgeon communication and patient perception demonstrated that explicit presentation of choice did not always result in patients experiencing agency. Some patients perceived that their surgeons framed surgery as an option, however, they still felt that it was inevitable. Other patients described perceiving a decision even though no alternatives were explicitly presented by the surgeon. Yet in some clinical scenarios, the surgeon’s explicitness and patient interpretations aligned, whether in the direction of a fully autonomous choice or a lack thereof. These full range of these intersections are summarized in Table 3, which maps surgeon communication against patient perception. Representative quotations for each quadrant of this conceptual matrix are further illustrated in Table 4.

TABLE 3.

Conceptual Matrix of Surgeon Communication and Patient Perception of Decision-Making

	Surgeon Explicity Offered a Choice	Surgeon Did Not Explicity Offer a Choice
Patient perceived a decision	Surgeon stated that a decision was to be made and outlined more than one option. The patient felt that a choice occurred and described awareness of agency.	Surgeon did not explicity present options, but the patient still perceived that they were making a decision, or inferred that one existed.
Patient perceived no decision	Surgeon described the decision as belonging to the patient, but the patient did not experience it as such;surgery was viewed as inevitable.	Neither the surgeon nor the patient described surgery as a decision. Surgery was presented and experienced as predetermined.

Conceptual matrix illustrating how surgeon communication and patient perception intersect in surgical decision-making. The vertical axis reflects whether patients perceived a decision; the horizontal axis reflects whether surgeons explicitly presented one.

DISCUSSION

In this qualitative analysis of 34 patients scheduled for or recently recovering from curative-intent abdominal cancer surgery, patients described a continuum of perceived choice, ranging from active participation in surgical decision-making to experiences in which surgery felt inevitable or predetermined. Although, most patients recalled being told that options existed, many nonetheless described surgery as “the only path forward,” linking it closely with the possibility of survival and a sense of doing what felt necessary to preserve their lives. These narratives reveal that even when surgeons explicitly reference choice, it may not fully translate into a felt sense of agency when the perceived alternative for the patient is ongoing disability (i.e., cancer-related pain, intestinal or biliary obstruction, etc.) or death. Prior analysis of surgical consultations with high-risk patients has found that surgical consultations are often dominated by technical explanations and “fix-it” language, with limited discussion of patients’ goals or quality of life.²³ This framing of surgery as both corrective and curative may inadvertently reinforce the perception that surgery is the singular available treatment option. Importantly, for many cancers, patients are not mistaken in this belief, as surgery is often the only pathway to cure. However, cure was not always explicitly articulated by patients as a personal goal and instead often emerged implicitly through how survival and alternatives were described, which further complicates how optionality is understood in these conversations. Our findings underscore how such curative framing can obscure authentic deliberation between the surgeon and patient regarding the upsides and downsides of various treatment options. While curative-intent procedures remain essential, surgeons might restore a sense of participation by acknowledging the realities of constrained decisions and recentering preoperative conversations on patient goals, priorities, and expected outcomes.

Building on this, a subset of participants acknowledged that declining surgery was technically possible, but they described this as a “theoretical” option without practical legitimacy. This phenomenon of nonchoice aligns with prior research showing that high-risk operations often unfold within a culture of clinical momentum, where the trajectory toward intervention feels predetermined for the patient. In interviews with surgeons performing high-risk operations in older adults, 1 study found that clinical discussions primarily centered on risk assessment and expectation setting, with few instances of true shared decision-making.²⁴ Similarly, a multicenter analysis of older adults considering major surgery demonstrated that surgeon SDM scores were highly variable and tended to be higher only when surgeons were reluctant to recommend surgery, suggesting that patient engagement often depends on clinical uncertainty rather than an integrated component of standard practice.²⁵ Our findings build upon this literature by showing that even when surgeons communicate optionality, patients may still experience surgery as obligatory due to emotional urgency, perceived social expectation, or the existential framing of cancer as a battle to be won. Recognizing this distinction between presented and perceived choice is essential for developing communication strategies that authentically engage patients.

Expanding beyond the issue of perceived inevitability, not all patients sought equal participation in decision-making. Some valued reassurance and decisiveness from their surgeons and deferred the decision as an expression of trust in surgical expertise, while others expressed disappointment at the lack of collaboration. This variability aligns with population-based findings, which reveal that preferences for participation in medical decisions vary substantially across individuals and demographic groups.²⁶ The literature also suggests that both surgeons and patients generally favor SDM in principle, yet contextual factors such as time pressure, treatment urgency, and disease acuity shape its feasibility. Together, these considerations highlight that SDM cannot be applied as a uniform communication framework in surgery. Particularly in high-stakes cancer care, where the ultimate goal of survival dominates, SDM must adapt from a model of “choosing among options” to 1 of aligning treatment within constraints, and helping patients understand, prepare for, and find meaning in what often feels like an inevitable course.

Finally, from a systems perspective, these findings suggest that SDM frameworks should be refined for contexts in which survival overwhelmingly drives the decision, particularly when operative risk is low, and surgery is routinely offered. In contrast, when medical or procedural comorbidities elevate the risk of morbidity or mortality, surgeons themselves often slow the decision-making process or withhold operative recommendations, creating a distinctly different decision environment. Existing frameworks in surgery increasingly emphasize tools such as explicit value clarification exercises, which have been shown to reduce decisional conflict and increase values-congruent choices.²⁷ However, these strategies assume that patients perceive a genuine choice, a presumption that does not always hold when surgery feels obligatory. In this context, training programs should also prepare surgeons to recognize and validate patients’ perceptions of nonchoice while sustaining transparent and empathic dialogue. By reframing surgical communication to incorporate emotional context, uncertainty, and patient meaning, clinicians can move closer to the intent of SDM, ensuring that patients feel heard, understood, and empowered in their treatment plans, even when the traditional definition of choice is absent.

These conclusions must also be considered in the context of our study population. Notably, because our study included only patients who pursued surgery, these findings do not capture how patients who decline surgical intervention may perceive choice, agency, or decision-making under similar conditions. Prior mixed-methods work has shown that decisions to decline oncologic surgery are often shaped by factors such as patient-physician trust, communication quality, health literacy, and structural inequities, highlighting an important area for future investigation.²⁸ Efforts to strengthen SDM training within medical education, including communication skills curricula and simulated patient encounters, may help prepare future surgeons to navigate these conversations more deliberately along the shared decision-making continuum.²⁹ Future work might also examine surgeon-side interventions, such as structured decision aids or communication checklists, similar to approaches used in oncology, where treatment discussions about chemotherapy often incorporate assessments of comorbidity, functional status, and competing risks. These tools may help surgeons more accurately identify where a patient wishes to situate themselves on the continuum and ensure that decisions align with those values.²⁹

Limitations

This study has several limitations. First, interviews were conducted at 2 academic centers and may not have captured the full diversity of surgical or cultural contexts. Second, although interviews were performed both pre and postoperatively, perceptions of choice may have shifted over time, making recall bias a possibility. Additionally, purposive sampling was used to ensure a range of diagnoses and patient perspectives, which may introduce selection bias and limit transferability. Importantly, because eligibility was restricted to patients who were scheduled for or had undergone surgery, this study does not capture the perspectives of individuals who declined surgical intervention. As a result, the full spectrum of SDM experiences and perceptions of agency may not be represented. This study was also not designed to compare perceptions of choice across cancer types or treatment contexts with differing numbers of clinically viable alternatives. Additionally, as this study represents a secondary analysis of an existing dataset, the scope of analysis was limited to the content and structure of the original interviews. Finally, as with all qualitative research, findings are interpretive and hypothesis-generating rather than generalizable to all patients undergoing high-risk surgical procedures. The rigor of the analytic process supports the trustworthiness of these findings within this study population.

CONCLUSIONS

Patients facing high-risk abdominal cancer surgery often perceive limited choice regarding whether to proceed, even when surgeons explicitly describe options. These experiences reveal a phenomenon of “nonchoice” decision-making among patients that challenges traditional, preconceived interpretations of SDM and patient autonomy. Future work should focus on developing communication frameworks and decision-support interventions that acknowledge the moral and emotional realities of surgical decisions that feel inevitable.

Appendix 1. Interview Guide

Preoperative Patient Interview

Introduction: “Thank you for agreeing to take time out of your day for this interview, we really appreciate your time and insights. My name is Dr. Kopecky and I work with the surgeons here at the University of Alabama at Birmingham. We are exploring the expectations that patients have about surgery and how those expectations influence decision-making. We are hoping to find ways to help patients and caregivers feel more prepared…"

Alright, so I want to tell you a little bit about how this interview is going to work. I’ve designed the interview to have 3 ‘sweeps’. The first sweep is designed for me to capture the highlights, the big/memorable moments or conversations that you had that influenced how you formed expectations about surgery. The second sweep is designed to get more information about each of those experiences that we identified in the first sweep, and to also make sure that we didn’t miss anything. In the last sweep, I’m going to ask you some what-if questions. For this whole interview, for all of these sweeps, I want you to try to go back in time to remember what you were thinking and how you were feeling IN THOSE MOMENTS along the way. For the first half of the interview, I’m not that interested in what you think NOW; I really want to figure out what you were thinking then. Any questions? Ok awesome, let’s get started.

This is your chance to have a voice, I want to …. I am hoping to have a complete picture, I really want you to describe in detail what your experience has been. Everybody’s experience is different and there are no right or wrong answers. Is best if you share your true experience with me.

If you want to stop the interview at any time, just let me know and we can stop. Though this interview was designed to elicit information that is helpful for our research team, there is no pressure to answer any questions that you feel uncomfortable with. I will not use any names in reporting what I learn from these interviews or identify you or anyone you mention in any way. Also, we will not share this recording with anyone besides the research study team. We have scheduled a maximum of 60 minutes for this interview; if there is a time that you need to stop by please let me know. In order to respect your time, we will plan to stop the interview after 60 minutes. Do you have any question for me before I start the interview? OK, let’s get started.”

[After the recording starts: State participant Study Number and date/time.]

I. Background: [Goal: Build rapport, establish a comfortable and unintimidating conversational space, capture key clinical data as a matter of record] (2–5 minutes).

• 1. For our interview record, can you tell me a little bit about the type of surgery that you are going to have?
• 2. And can you remind me, have you had any experience with surgery before?
  • a. If yes, what has been your prior experience with surgery?

II. First Sweep: [Goal: Develop a timeline of the patient’s expectations of surgery; identify sources that influenced expectation development] (10–15 minutes).

OK, so for this first sweep let’s make a list of key moments that you remember, starting from when you were first diagnosed. I’m looking for the memorable times or events that stand out (without going into specific details). We can start from the moment you learned about your diagnosis to when you learned that surgery was an option, plus any conversations (in or out of the hospital) that impacted your understanding of things. These can include specific words that the doctors used, the way you remember understanding information at the time, memorable conversations from clinic visits, or conversations with loved ones, work colleagues, or those in your faith community, or even information you read or found on the internet.

I’m going to make a timeline.

[Helpful phrase to use as needed: Before you give me too much detail about this one experience, let’s finish making this list – then I want to come back to hear more about this.]

• 1. Ok, let’s make the list together
  • a. Probe: Things the first doctor said
  • b. Probe: Things the surgeon said
  • c. Probe: When did surgery first present itself as an option?
  • d. Probe: Who was the first person you shared the diagnosis with?
  • e. Probe: Who was the first person you told about the option of surgery?
  • f. Probe: Did you talk with anyone that you knew who had cancer, or who had surgery for cancer?
  • g. Probe: Did you seek out information from any additional resources to learn more about surgery?
  • h. Probe: Did you look into/join any support groups?
• 2.[After the list is made] OK, let me tell you everything I wrote down and you tell me if I missed anything.

  1. I want to make sure that we are capturing everything, did you do any of [these things above ^]

III. Second Sweep: [Goal: Discover the story behind the story, broaden each of the key moments in the first sweep; looking for different trends in their thoughts/expectations/feelings] (30–40 minutes).

Another way to organize: structure less about the specific occurance, but the same questions about each occurance.

Walk me through like a movie how this visit played out as best as you can recollect; walk me through the scenes as best as you can remember.

• - When the surgeon said X, what was immediately in your mind at that time; were you feeling any emotions?; Were you starting to make plans or imaging a future? How you felt in that moment?
• - What was actually said versus what you feel like you heard. [What did that mean to you in the moment?] What else stood out to you in this first encounter.
• - What was going on in your mind about what surgery might be like for you?

• 1. When you first got the diagnosis, what was your understanding of the situation at that time?
  • a. Probe: What did you know about cancer or surgery at the time of your diagnosis?
• 2. When you first met with the oncologist, what was your understanding of the situation at that time?

  1. Probe: How did your thinking about the diagnosis change when you compare how you were thinking before meeting with the oncologist versus after meeting with them?

• 3. When you first spoke with the surgeon, what was your understanding of the situation at that time?

  1. Probe: Did you expect that surgery an option before meeting the surgeon?

  2. Probe: How did your thinking about the possibility of surgery change when you compare how you were thinking before meeting with the surgeon versus after meeting with them?

  3. Probe: Can you describe your expectations before you met with the surgeon?

  4. Probe: After meeting with the surgeon, how did your expectations change?

  5. Probe: What information did the surgeon share that was the most helpful?

  6. Probe: What information didn’t get conveyed, that you wished had been?

  7. Probe: In the moment/hours after you left the surgeons office, was there anything that you wished you had asked or shared with the surgeon that you forgot to mention/discuss?

  8. Probe: Why do you think you forgot to mention that or bring it up [in that moment]

  9. Probe: Was there ever a time when you felt like you didn’t understand what the was telling you? How did you handle this?

• 4. When you first spoke with your family or friends, how were you feeling?

  1. Probe: Did you talk with them about the option of surgery? What information did you share?

  2. Probe: Did anything they said influence how you thought about surgery or what it would be like?

  3. Probe: Did you understanding/conception of surgery change in any way after this conversation?

• 5. When you [read online] about surgery, what information were you looking for?

  1. Probe: Did the information that you found help you understand surgery better? Why or why not?

  2. Probe: How did you know where to look/search for the information?

  3. Probe: Did you wish that you had gotten this information from your surgeon, or it was better to get it [online]?

  4. Probe: Did you understanding/conception of surgery change in any way after reading/finding this info? If so, how?

  5. Probe: Would it have been helpful if your surgeon had given you the names/info of trusted online resources?

• 6. When you [joined the support group], what information type of support were you looking for?

  1. Probe: Did you find the support group to be helpful? If yes, in what ways/how?

  2. Probe: Did you understanding/conception of surgery change in any way after [participating in the support group]?

  3. Probe: Did you wish that you had gotten this support from your surgeon, or it was better to get it [from a structured support group]?

  4. Probe: Would it have been helpful if your surgeon had given you the names/info of known support groups?

• 7. How did your PSH influence how you thought about this surgery?

  1. Probe: How is this surgery different or the same from the surgery that you’ve had in the past?

  2. Probe: How did you know that this surgery as different?

  3. Probe: What clues/cues did you pick up on that this surgery was [“serious”]?

  4. Probe: Tell me more about what [“serious”] surgery means to you.

• 8. Different people feel like they have different levels of “ownership” about making the decision to have surgery. At what point was the decision to have surgery made?

  1. Probe: Do you feel like you made the decision to have surgery? What was this like for you?

  2. Probe: Is this how you expected it would be/feel to make this decision?

  3. Probe: Are there any other factors that we haven’t yet talked about that influenced the decision to have surgery, or your expectations of surgery?

Shifting to the present moment, I have a few questions about how you are thinking about things now. There are no right or wrong questions here.

• 1. Can you talk to me about your expectations regarding the outcome of the surgery? What are you hoping for the most with the surgery?
  • a. Probe: I’d like to know about any specific goals that you expect will be achieved with surgery?
  • b. Probe: How do you expect that the surgery will affect the cancer and/or your prognosis[chance of long-term survival]?
  • c. Probe: How do you expect that surgery will impact your quality of life?
• 2. How will know you know that surgery has been successful from your perspective? What will that look like?
• 3. What are your specific concerns, fears, or worries related to the surgical procedure itself?

  1. Probe: How did these concerns impact your decision to move forward with surgery?

• 4. How has your faith impacted your expectations of surgery, if at all?
• 5. How will you know if surgery was worth it?
• 6. How much of what we have talked about so far (i.e. your perceptions of what to expect from surgery) did you share with your surgeon?

  1. Probe: Why did you share it, or why not?

Ok next I want to pivot to ask a bit about your specific expectations regarding what it’s going to be like to recover from surgery.

• 1. Can you tell me what you think it will be like when you wake up from surgery?
• 2. How do you think you will feel while you are still in the hospital after surgery?
  • a. Probe: What are you expecting will be the hardest part of recovery while you’re in the hospital?
  • b. Probe: What impact do you think the surgery will have on your Appetite? Pain? Sleep? Cognitive function/ability to think clearly?
• 3. Do you plan on having help or family support as you recover from surgery, if so, who? What help/family support have you planned for after surgery?

  1. Probe: How are you expecting that people within your support system will be able to help?

• 4. How do you expect surgery will influence your family relationships?

  1. [Is this was you expected?]

• 5. How do you expect surgery will affect your identity?
• 6. How do you expect you will feel a few weeks after surgery?

  1. Probes: Energy level? Appetite? Pain? Sleep? Cognitive function? Ability to work? How will surgery have impacted your ability to participate in valued recreational or social activities? Activities that you enjoy doing in the community?

• 7. How do you think you will feel a few months after the surgery?

  1. Probes: Energy levels? Appetite? Pain? Sleep? Cognitive function? Ability to work or travel? Ability to participate in valued recreational or social activities? Your daily routine and responsibilities?

• 8. What are your worries or thoughts about the long-term effects or outcomes of the surgery?

IV. Third Sweep: [Goal: ask “What If” questions to gain further insight] (2–5 minutes).

• 1. Is there any information that, if offered, would have impacted your decision to undergo surgery?
  • a. Probe: What if it was somehow known that you would have a minor complication after surgery, would that change your willingness to undergo surgery?
  • b. Probe: What if it was somehow known that you would have a major complication after surgery, would that change your willingness to undergo surgery?
  • c. Probe: What if it was somehow known the cancer was going to come back within the first 6-months after surgery, would that change your willingness to undergo surgery?
  • d. Probe: Can you think of any other scenarios/information that would change the way you think about surgery?, or that would make sure more or less worth doing?

What if the surgeon had [been an African American man]…?

Getting a sense of what the major drivers were of the expectations in the first and second sweep, and manipulating those drivers to see if it changed the result.

• - How would have this affected your conversation/thoughts about surgery and your expectations?
• -If X part of this/your experience were different, how do you think you would have acted/felt/thought differently about Y? (pain, impact on family)

Closing Questions and Debriefing: (10–15 minutes)

• 1.What role do you expect your healthcare provider(s) to play in helping you manage your expectations and prepare for surgery? What do you wish would have been different about this situation that would have helped you be less anxious/stressed/angry/more informed (move up)
• 2. Can you describe any information or support you would have liked/helpful to receive from the surgical team before the surgery? What information do you wish had been different….
• 3. What type of information would have been most helpful to prepare you for surgery? What information do you wish….
  • a. Probe: Pamphlets, brochures, internet-based resources?

Thank you so much for your time, I really appreciate it. I am going to stop the recording now. Please feel free to reach out to me if you have any questions or concerns.

Post-operative Patient Interview

Introduction: “Thank you for agreeing to take time out of your day for this interview, we really appreciate your time and insights. My name is Dr. Kopecky and I work with the surgeons here at the University of Alabama at Birmingham. We are exploring the expectations that patients have about surgery and how those expectations influence decision-making. If you want to stop the interview at any time, just let me know and we can stop. Though this interview was designed to elicit information that is helpful for our research team, there is no pressure to answer any questions that you feel uncomfortable with. I will not use any names in reporting what I learn from these interviews or identify you or anyone you mention in any way. Also, we will not share this recording with anyone besides the research study team. We have scheduled a maximum of 60 minutes for this interview. In order to honor your time, we will plan to stop the interview after 60 minutes; let me go ahead and set my timer now. Do you have any question for me before I start the interview? OK, let’s get started.”

[After the recording starts: State participant Study Number and date/time.]

I. Background: [Goal: Build rapport, establish a comfortable and unintimidating conversational space, capture key clinical data as a matter of record] (2–5 minutes).

1. For our interview record, can you tell me a little bit about the type of surgery that you are going to have?

2. And can you remind me, have you ever had surgery before, or is this your first experience with surgery?

Alright, so I want to tell you a little bit about how this interview is going to work. I’ve designed the interview to have 3 “sweeps.” The first sweep is designed for me to capture the highlights, the big/memorable moments or conversations that you had that influenced how you formed expectations about surgery. The second sweep is designed to get more information about each of those experiences that we identified in the first sweep, and to also make sure that we didn’t miss anything. In the last sweep, I’m going to ask you some what-if questions. For this whole interview, for all of these sweeps, I want you to try to go back in time to remember what you were thinking and how you were feeling IN THOSE MOMENTS along the way. For the first half of the interview, I’m not that interested in what you think NOW; I really want to figure out what you were thinking then. Any questions? Ok awesome, let’s get started.

II. First Sweep: [Goal: Develop a timeline of the patient’s expectations of surgery; identify sources that influenced expectation development] (10–15 minutes).

OK, so for this first sweep let’s make a list of key moments that you remember, starting from around the time when you were first diagnosed. This is an interview about expectations, so I’m looking for the most memorable times or events that stand out: from the moment you learned about your diagnosis to when you learned that surgery was an option, plus any key conversations (in or out of the hospital) that impacted your understanding of things. These can include specific words that the doctors used, the way you remember understanding information at the time, memorable conversations from clinic visits, or conversations with loved ones, work colleagues, or those in your faith community, or even information you read or found on the internet.

[Helpful phrase to use as needed: Before you give me too much detail about this one experience, let’s finish making this list – then I want to come back to hear more about this.]

• 1. Ok, let’s make the list together
  • a. Probe: Things the first doctor said
  • b. Probe: Things the surgeon said
  • c. Probe: When did surgery first present itself as an option?
  • d. Probe: Who was the first person you shared the diagnosis with?
  • e. Probe: Who was the first person you told about the option of surgery?
  • f. Probe: Did you talk with anyone that you knew who had cancer, or who had surgery for cancer?
  • g. Probe: Did you seek out information from any additional resources to learn more about surgery?
  • h. Probe: Did you look into/join any support groups?
• 2.[After the list is made] OK, let me tell you everything I wrote down and you tell me if I missed anything.

III. Second Sweep: [Goal: Discover the story behind the story, broaden each of the key moments in the first sweep; looking for different trends in their thoughts/expectations/feelings] (30–40 minutes).

• 1. When you first got the diagnosis, what was your understanding of the situation at that time?
  • a. Probe: What did you know about cancer or surgery at the time of your diagnosis?
• 2. When you first met with the oncologist, what was your understanding of the situation at that time?

  • a. Probe: How did your thinking about the diagnosis change when you compare how you were thinking before meeting with the oncologist versus after meeting with them?

• 3. When you first spoke with the surgeon, what was your understanding of the situation at that time?

  • a. Probe: Did you expect that surgery an option before meeting the surgeon?

  • b. Probe: How did your thinking about the possibility of surgery change when you compare how you were thinking before meeting with the surgeon versus after meeting with them?

  • c. Probe: Can you describe your expectations before you met with the surgeon?

  • d. Probe: After meeting with the surgeon, how did your expectations change?

  • e. Probe: What information did the surgeon share that was the most helpful?

  • f. Probe: What information didn’t get conveyed, that you wished had been?

  • g. Probe: After you left the surgeons office, was there anything that you wished you had asked or shared with the surgeon that you forgot to mention/discuss?

  • h. Probe: Why do you think you forgot to mention that or bring it up?

  • i. Probe: Was there ever a time when you felt like you didn’t understand what the was telling you? How did you handle this?

• 4. When you first spoke with your family or friends, how were you feeling?

  • a. Probe: Did you talk with them about the option of surgery? What information did you share?

  • b. Probe: Did anything they said influence how you thought about surgery or what it would be like?

  • c. Probe: Did you understanding/conception of surgery change in any way after this conversation?

• 5. When you [read online] about surgery, what information were you looking for?

  • a. Probe: Did the information that you found help you understand surgery better? Why or why not?

  • b. Probe: How did you know where to look/search for the information?

  • c. Probe: Did you wish that you had gotten this information from your surgeon, or it was better to get it [online]?

  • d. Probe: Did you understanding/conception of surgery change in any way after reading/finding this info? If so, how?

  • e. Probe: Would it have been helpful if your surgeon had given you the names/info of trusted online resources?

• 6. When you [joined the support group], what information type of support were you looking for?

  • a. Probe: Did you find the support group to be helpful? If yes, in what ways/how?

  • b. Probe: Did you understanding/conception of surgery change in any way after [participating in the support group]?

  • c. Probe: Did you wish that you had gotten this support from your surgeon, or it was better to get it [from a structured support group]?

  • d. Probe: Would it have been helpful if your surgeon had given you the names/info of known support groups?

• 7. How did your PSH influence how you thought about this surgery?

  • a. Probe: How is this surgery different or the same from the surgery that you’ve had in the past?

  • b. Probe: How did you know that this surgery as different?

  • c. Probe: What clues/cues did you pick up on that this surgery was [“serious”]?

  • d. Probe: Tell me more about what [“serious”] surgery means to you.

• 8. Different people feel like they have different levels of “ownership” about making the decision to have surgery. At what point was the decision to have surgery made?

  • a. Probe: Do you feel like you made the decision to have surgery? What was this like for you?

  • b. Probe: Is this how you expected it would be/feel to make this decision?

  • c. Probe: Are there any other factors that we haven’t yet talked about that influenced the decision to have surgery, or your expectations of surgery?

Shifting to the present moment, I want to ask a bit about what it’s been like to recover from surgery.

• 1. What was it like to wake up after surgery?
  • a. Is that how you were expecting it to be?
• 2. What was it like to recover in the hospital?
  • a. Probe: Is that how you were expecting it to be?
  • b. Probe: What was the hardest part about being in the hospital?

    1. Is that what you expected?

  • c. Probe: What was the easiest part about being in the hospital?

    1. Is that what you expected?

• 3. How have you been feeling at home because surgery?
  • a. Did you go home with drains?

    1. Were you expecting that?

  • b. Probe: Is this how you were expecting to feel at this point in your surgical recovery?
  • c. Probe: What has been the most frustrating experience of your surgical recovery?
• 4. How has surgery impacted your energy level?

  1. Probe: Appetite? Pain? Sleep? Cognitive function? Ability to work? Ability to participate in valued recreational or social activities?

• 5. Thinking overall about your surgical recovery, what has been easier than you expected?
• 6. Thinking overall about your surgical recovery, what has been harder than you expected?
• 7. What are you most worried about at this stage in your surgical recovery?

  1. Probe: How often does that worry bother you?

  2. Probe: Were you expecting to be worried about this?

• 8. At this point in your surgical recovery, do you feel that everything you have gone through because surgery has been worth it?

  1. Probe: Why or why not?

• 9. Who have you relied on most for help/support?
• 10. How has surgery influenced your family relationships?
• 11. How has faith influenced your recovery from surgery?
• 12. Was your final pathology discussed at your post-operative visit? If so, was the result what you were expecting?

IV. Third Sweep: [Goal: ask “What If” questions to gain further insight] (2–5 minutes)

1. If you had known what you know now about what it’s like/what is needed to recover from surgery like this, would having that information have impacted your decision to undergo surgery?

2. Is there anything that you wish you would have known before surgery about what your surgical recovery was going to be like?

Closing Questions and Debriefing: (5–10 minutes)

• 1. What role do you expect your healthcare provider(s) to play in helping you manage your expectations and prepare for surgery?
• 2. Can you describe any information or support you would have liked/helpful to receive from the surgical team before the surgery?
• 3. What type of information would have been most helpful to prepare you for surgery?
  • a. Probe: Pamphlets, brochures, internet-based resources?

Thank you so much for your time, I really appreciate it. I am going to stop the recording now. Please feel free to reach out to me if you have any questions .