The decision about if and when to have surgery for lumbar disc herniation (LDH) can be complex, as the majority of patients improve without surgery over time.1 Nonsurgical treatment may include steroid injections, physical therapy, or medication often being individualized to the patient. Apart from the presence of neurologic impairment, there is no consensus as to the exact indications for or on the optimal time for surgery in relation to the onset of symptoms.2,3 Even though randomized controlled studies have shown that surgery provides a more rapid relief of symptoms and earlier return to activities compared with nonsurgical treatment, long-term outcomes were similar.4–6 A methodological concern in these randomized trials was that a large number of patients crossed over in both directions, making the evidence in favor of either treatment inconclusive.
With an overall risk of 10% to 13%, discectomy exposes the patients to a risk of complications.7 This fact, as well as the two issues, inconclusive evidence on the advantages of surgery and unclear guidance on when to consider surgery, make the decision to opt for surgery truly preference-sensitive. In these cases, the use of a shared decision-making (SDM) model is recommended, in order to determine the best treatment for each individual patient.3,4 In SDM, before reaching a decision together, clinicians share their knowledge about treatment options, including benefits, harms, and uncertainties, while patients share information about their goals, concerns, and preferences.8,9 Although most health care professionals intend to share decision-making with the patient, several factors have been identified as barriers to implementation.10–12
Clinicians describe time constraints and lack of applicability due to patient characteristics and clinical status,10 while patients find that lack of continuity and rapid throughput allows them insufficient time for reflection.11 Choice of treatment is also influenced by the patient's preference for autonomy, whether they prefer to make the treatment choice themselves or to rely on the clinician's opinion.12 Furthermore, the interaction between clinicians and patients might be influenced by a power imbalance or lack of preparation for SDM.11
A majority of patients wish to be involved in the decision-making process. However there can be individual differences.13 To involve patients in treatment decisions, knowledge about factors affecting the patients’ choice is important. In a review including seven quantitative studies it was found that the choice could depend on patients’ level of pain, psychosocial health, and their level of functional disability.12 One of the concerns from the patients on whether or not to opt for surgery was assumptions about benefits and harms of different treatment modalities.12
To our knowledge no qualitative research has focused on this area in spinal surgery. Consequently, important factors or concerns about the decision-making process remain unstated. The purpose of this study is to explore from a patient perspective what affects patients’ decisions on whether or not to have surgery for symptomatic LDH. Enhanced knowledge of patients’ needs in the decision process can guide clinicians when sharing decisions with the patients.
MATERIALS AND METHODS
Data were collected from a tertiary care spine center at a regional hospital in Denmark. The department consists of a medical and a surgical unit, working together in a joint clinic, offering fast-track treatment. All patients are first seen by a medical spine specialist (a chiropractor, a physiotherapist, or a rheumatologist) and followed by a spine surgeon.
This study used a hermeneutic-phenomenological approach based on interviews.14 The investigators tried to uncover the process of decision-making as it was experienced by the patients through their real-life stories. All interviews were transcribed and analyzed using a meaning-condensation method, where natural meaning units from the transcribed interviews were highlighted and categorized into four main themes.14 The criteria checklist “Consolidated criteria for reporting qualitative research” (COREQ) was used for reporting this study.15
All participants had MRI verified LDH with concordant symptoms. They were all assessed by a surgeon as being candidates for discectomy and were at the point of having to choose whether or not to have surgery. During the patients’ first visit, the surgeon asked the patient for their consent to be contacted by a researcher. The researcher contacted the patients by phone. After being told about the purpose of the project, 14 of 27 consecutive patients gave their verbal informed consent (Figure 1). All patients, whether they opted for surgery, declined surgery, or needed time to consider their treatment, were interviewed.
The interviews were semistructured using a guide, developed, and pilot-tested by two interviewers: a sociologist with experience in qualitative research and a physiotherapist (first author) who works closely with spine surgery patients. Questions were open-ended, followed by supplementary questions. The first question asked was: “Tell me about your first visit at the spine center?” Additional questions could be: “Who did you meet?”, “What kind of information did you receive?” The interviewers were careful not to affect the patient's treatment choice. Patients who were still undecided were interviewed by phone to capture their thoughts and feelings while they were still considering their treatment options. The other interviews were either conducted in the patients’ home or by phone, based on patient preference.
Nine patients were reinterviewed to find out if they had experienced anything that they considered to be relevant to know when they made their decision. The second interview took place between 1 to 2 months after the first. Most of the patients preferred a follow-up telephone interview. The number of patients interviewed was determined by the ongoing evaluation of data saturation (inclusion until nothing new appeared). Five patients had one and nine patients had two interviews (Table 1).
All interviews were audio recorded and transcribed. A meaning condensation method was used to analyze the data.14 Transcripts were read through several times to identify relevant units of meaning, this means that citations were extracted and sorted into themes. This was done by the first author and was discussed by the research-team to reach a final conclusion of essential themes. Data were analyzed within a theoretical understanding of SDM which Elwyn et al 8 has described in a three-step model. This model suggests that to reach a shared decision three main steps needs to be addressed: A) a team talk where you make it clear to the patients’ that their views are important and that you as a team, clinician, and patient, are going to work together, B) option talk where harms and benefits of each option are presented, and C) decision talk where the patient's preferences, meaning the things that matters most to them, are elaborated. The interviews were thus interpreted in this context of Shared Decision making, which was used to identify relevant factors that influenced the decision-making process. The Study was approved by the Danish Data Protection Agency. The Regional Committees on Health Research Ethics reviewed the study and determined it to be exempt from review.
Several issues were identified that could influence the patients’ decision-making process. The main themes are illustrated using examples and quotes. The four main themes were based on items that recurred in several interviews.
- Patient information: patients conceptions about treatment and risk were not always based on sufficient information
- Accelerated workflows: some patients needed time to process the information given, which may be limited due to accelerated hospital workflows
- Power imbalance: patients can be reluctant to challenge the system, as they do not want to offend, which can be seen as a power imbalance between clinicians and patients
- Personal past experience: experience, about treatment options from, i.e., close relatives, can have a great impact on the patients’ thoughts about possible treatments.
Some of the interviews revealed that patients, before their visit to the Spine Center, had different ideas regarding the risk and benefits of treatment for lumbar disc herniation. One patient thought that the spine would get stiff after surgery. Another patient thought that massage could make the herniated disc disappear. Yet another example is cited below where a patient came to the Spine center with a belief of an unlikely high risk of surgery:
P: “My physiotherapist told me, that surgery was the last thing to choose, because in 70% of cases, the surgery wouldn’t help. I asked the surgeon, and he said he had never heard that.”
I: So before you came, because you were told that in 70% of cases it wouldn’t help, you were thinking not to have an operation?
P: Yes. If the surgeon had said the same thing, I would’ve asked for exercises instead.
Most patients felt they were well informed at the Spine Center about the expected outcome of different treatments and risk of complications after surgery. However, some of the patients reported that they were mainly informed about surgery in contrast to nonsurgery treatment. In addition patients reported varying estimates of benefits and harms of surgery during the interviews. No risk assessment tool was used to illustrate these outcomes for the individual patient.
One patient, however, explained how she experienced the risk of complications as being the primary focus in her consultation, and how it affected her choice:
I: Did you talk about pros and cons of each option?
P: No, I felt like we only talked about disadvantages of surgery. […] for instance if you damage the nerve, you could get paralyzed in the legs, you could have continuously pain […]. That was why I wanted to start with an injection. Just talking about the risk, didn’t do surgery any good.
Another example demonstrated the importance of outlining exactly what the treatment included. A patient, who followed “a supervised program” to see if she could avoid surgery, stated at the follow-up interview that she would have declined the program had she known what it involved, which could be seen as regret of the treatment received:
I: So you joined this supervised program? Did you know the details of the program?
P: No. But it was just talking. And I don’t think that’ll help.
P: I thought that I would get some exercises. I don’t know what it was really about, apart from talking. That was it.
I: If you’d known what you know now, what it implied. What would you do?
P: Then I would say no thank you.
Many patients said that they appreciated the fast-track visit and the short waiting time. However it seemed like the fast-track, for some patients, could be too fast, and put a lot of pressure on them when making decisions. When given a lot of information within a few hours, from many different health care providers, some patients found it challenging to absorb and ask the right questions:
“Well the information is adequate. The problem is though, that when you get all this information in one day it needs time to settle. And then you can ask all the right questions. But I didn’t really get the chance to”.
It was clear that some patients found it hard to refuse the offer of treatment. They found it difficult to say no thank you or ask for time to consider, since it seemed like everything was ready and could not be undone.
This first example concerned whether to ask for more time to consider whether or not to have an early date for surgery:
“I would have liked my wife to come along. But as I told her, it is not easy when everything is organized and ready. They call you, and tell you that they are ready for you. Somehow I felt like I wasn’t entitled to reject the offer. Now that they were so kind…to call me, and everything was ready. They were just waiting for me. Well…and it went well”.
The latter example was a situation where a patient had actually asked for time to consider her treatment. She put it this way:
I: Did you feel that they supported you in having time to consider your decision?
P: No, to be honest, I didn’t feel supported.
I: What did they want then?
P: They would make an appointment right away. That was how I understood it. Because the surgeon told me that there was a waiting list. So the sooner we decided, the earlier the treatment could begin.
Power Imbalance Between Clinicians and Patients
Several examples from the interviews revealed that patients undervalued their own expertise and initial preferences relative to surgeons’ knowledge and recommendations.
No patients mentioned any expectations about being an active participant in the decision-making process. The following quote exemplifies exactly how patients see themselves as inferior to the clinician, showing a power imbalance that affects the patient's final choice:
“We were talking; all three of us, the physiotherapist, the surgeon and I, and we made the decision about surgery. Then we went to the surgeon's consultation, to talk about the procedure of surgery and so on. So I kind of made the decision, but they gave their clear recommendations. And I can’t. Well. They are the professionals and I am just a patient –right? So I have to trust that what they say is right”.
A few patients explicitly reported that they did not think their own thoughts and preferences were taken into account in the decision-making process. This was also the case in the following quote from a patient, who did not initially want surgery, but changed his mind after meeting the surgeon:
P: But once the surgeon told me that 90% of the patients get better and that it was just a small scratch then I had no doubt. Then I wanted an operation.
I: Did anybody ask you what kind of treatment you preferred?
P: No not really. No. And when they say it, then that's what I do. They were really easy to talk to and calm. If they’d told me that the scar would be like 10 centimeters, then I would question it[…]They didn’t talk about anything else. They didn’t”.
Patients’ choice could also be affected in a more indirect way. A patient explained that she had discussed her choice on the way home from the Spine center with her husband. After the consultation, she had decided to try rehabilitation before surgery. In their conversation it became clear that they both felt the surgeon, indirectly, thought it was a bad idea and that it would not help her, showing how difficult it is to question the attitude of the surgeon:
P: Well the surgeon said that I could get an operation right away, if I wanted […]. But my dad had an operation because of a herniated disc and my sister […] Both of them only work 4–5 hours a day […] So I asked the surgeon if there wasn’t a plan B […] And then the surgeon said, that I could try a physiotherapist […]. The surgeon would give me half a year, and then we could talk again […].
I: So it [red: the opportunity of having an operation] was open for half a year or?
P: Yes. The surgeon said. No the surgeon didn’t say it, but you could kind of…we talked about it on the way home; you could kind of hear it between the lines that the surgeon didn’t think physiotherapy would help.
Entering the Spine center this patient felt confident that she would try everything else possible before surgery, but ended up being doubtful.
Experience, about treatment options from close relatives, can have a great impact on the patients’ thoughts about the possible treatments. One patient had a friend who reported a good outcome after surgery; she had no doubt that she wanted an operation. Another patient had two close relatives who had spine surgery, which limited their ability to work. She was much more insecure and needed more time to consider her choice, even though she was very disabled by her condition.
Some patients saw surgery as the last resort:
“[…] as my symptoms are not getting any better and it's been five months, I think it is the only way out for me. I told them anyway that I am aware of the risks and that this [red: surgery] is what I want”.
People who chose surgery had no faith left in nonoperative treatment and some of them could not see the light at the end of the tunnel:
“I was told that sometimes the symptoms just disappear. Then I can just wait and see […]. But if you wait 7–8 weeks, thinking it might disappear, and then having to go through it anyway”
Some of the interviewees were exhausted and limited in their everyday lives, e.g., symptoms disturbed their sleep, they found it hard to go to work, and they avoided social activities.
Patients, who opted for nonsurgical treatment, even when surgery was offered, still believed in the possibility of symptomatic relief from conservative care. Age could also be an important factor for not choosing surgery. One patient stated that she felt she was too old for surgery and that she was “not worth it.” The same patient considered the risk of surgery as being too great, a view shared by several other study participants.
Apart from these main themes it was noted that relationships between patients and surgeons in general were regarded as good and most patients had considerable trust in the surgeons. Most patients felt that the surgeons were very attentive in the consultation and took the time needed to see them. In general, they were very satisfied with consultations at the Spine center.
A number of factors can have a substantial influence on a patients’ decision-making process and the decision itself, choosing whether or not to have surgery for LDH. Previous research on this topic has primarily been quantitative, which might not have identified all relevant issues.12 In the current study four main themes were identified.
Most patients in our study had already tried conservative treatment before surgery. Although they were generally satisfied with their care, it was clear that balanced information about having or not having surgery was not always provided. The patients reported that they were mainly informed about the procedure, the risk and the expected outcome of surgery. Informed consent is a legal requirement in all health care settings, so clinicians are expected to provide adequate information about treatments, including the risks and likely outcomes.16 Knowing that the evidence of surgery being superior to nonsurgical treatment is inconclusive, clinicians should carefully discuss this knowledge gap with the patients and explain the uncertainty that is associated with both choosing and not choosing surgery.4–6 Our study showed that misconceptions, i.e., an unlikely high risk of failure with surgery, might influence the patient's preference against surgery. Therefore, it is important to identify the patient's preconceptions and discuss their initial preference. This can facilitate a more nuanced discussion of the evidence for and against discectomy.
Shared decision-making expands the idea of informed consent and proposes that not only scientific evidence on effectiveness, including alternative treatments, but also the patients’ preferences play a role in the decision-making process.8 Decisions are then made in a collaborative way. Using the main elements of shared decision-making could potentially accommodate some of these stated challenges.9
Our study also showed that the patients had different ideas of the surgical outcome even after consulting a spine surgeon. Knowing that the surgical risk of complications and poor outcome might differ from patient to patient, it will be preferable if individual differences are communicated using a predictive model based on Patient Reported Outcomes (PRO); ideally with data from patients treated both with and without surgery. The use of PROs has been proven useful in the decision-making process and effective to improve patient–provider communication and patient satisfaction.17,18 Although the patients in our study expressed a high degree of trust, not surprisingly power-imbalance was observed in the patient–clinician relationship. Some patients stated views like “Surgeons are the professionals, I am just a patient.” The patients in our study were in general very satisfied and grateful with how they were treated. However, it also became clear that they did often not want to cause any inconvenience. This issue of not being perceived as a difficult patient is also discussed by Berry et al 19 who suggest patients become hostages to health care, as they depend on the care unit services and see the clinicians as the greater authorities, which put them in a position of powerlessness. They introduce the phenomenon “Hostage bargaining syndrome,” which concerns how patients adapt their response to authorities, making compromises, such as asking fewer questions, or understating their concerns, because they worry about giving too much trouble, that might affect the quality of care that they are given.19
It is our belief that tackling the power imbalance requires a change in consultation style, where patients are encouraged to consider their own preferences and develop skills of self-representation, this is also suggested by Joseph-Williams et al.11 If patients are recommended a treatment from a clinician, then that is in many cases what they will choose.20 We believe that clinicians need to be more aware of this problem, addressing it by inviting patients to participate in the decision-making process. This may require preparation for patients, emphasizing the importance of their role and encouraging them to express their preferences.11
A further finding from our study was that the organizational structure did not always facilitate an optimal decision-making process. Even though accelerated workflows are efficient and presumably benefit the patients on some level, the fast track clinical pathway was, in our study, shown to be too fast sometimes, putting the patients under pressure to make hasty unconsidered choices. We found that some patients are reluctant to ask for more time to consider their options. Making it explicit that it is acceptable to say no thank you or ask for time to consider could possibly optimize the patients’ decision-making process. Findings from our study indicate an even greater need for emphasis on patients’ individualized needs.
There are several limitations to our study. Interviewing only 14 patients makes us unable to say anything about the frequency of the identified issues. This study only explores the decision-making process from one clinical site. There might be cultural as well as organizational differences between hospitals that make the result of this current study more or less generalizable. Clinicians at the given Spine center, i.e., attend a mandatory communication course, which might affect the patients’ general satisfaction with the communication in the consultation; not all hospitals have a procedure on communication education. Also the relationship between doctors and patients can be different, perhaps in other countries more paternalistic than in Denmark. Another limitation is that the research-teams preunderstanding might affect the results of the study. The authors’ understanding of what is important in the decision-making process may for instance have influenced the themes that emerged in the analysis. Even though the authors have a wide variety of clinical background as physiotherapist, spine surgeons, and oncologist, this work originates from a spine surgery department, which might have produced an inadvertent positive perspective toward surgery. In conclusion several factors can influence patients’ decision-making process. Understanding these complex factors will help surgeons and other health care professionals to better support the patients in a shared decision-making process when choosing between surgical and nonsurgical treatment for LDH. However, accelerated workflows can hinder optimal decision-making processes as it does not allow the patients time for reflection. Finally, it is important to be aware of patients’ reluctance to challenge the system, and to invite patients to participate to overcome the power imbalance between clinicians and patients.