“I knew what was going to happen if I did nothing and so I was going to do something”: Faith, hope, and trust in the decisions of Canadians with multiple sclerosis to seek unproven interventions abroad

Recruitment

Following receipt of ethical approval from the Office of Research Ethics at Simon Fraser University, we recruited former Canadian medical tourists to participate in these interviews using: 1) advertisement on Craigslist; 2) advertisement in a Vancouver-based newspaper; 3) posting invitations to participate in online medical tourism fora; and 4) snowball sampling through interview participant networks and past research participant networks. Interested individuals were asked to contact either a toll-free number or email address for more information about the study and assessment of eligibility. Eligibility was assessed according to four inclusion criteria: 1) 18 years or older at the time of going abroad for medical care; 2) a holder of a provincial/territorial medical card; 3) someone who had accessed a surgical procedure outside of Canada that was neither a transplantation nor a reproductive surgery (as these procedures often involve third parties and raise distinct ethical issues); and 4) someone who paid privately for the medical procedure sought abroad. Those deemed eligible for participation were provided with a consent form to read and sign before beginning the interview. Verbal confirmation of informed consent was also obtained at the beginning of the interview and participants were assured of their anonymity.

Data collection

Interviews were conducted between October 2012 and December 2012. On-going recruitment occurred during these months with the intention of completing as many interviews as possible before ceasing recruitment at the end of this time period. Interviews lasted on average 45 minutes, with the shortest lasting approximately thirty minutes and the longest lasting approximately one hour and a half. This range in interview times is due to their semi-structured nature, wherein a standard guide for interview questions was used but participants were also invited to discuss ideas that were not otherwise asked that may provide meaningful insight to a broader understanding of the topic at hand [29]. The interview guide contained questions organized into four sections: basic background information, including demographics, general health, and past travel experiences; participants’ general decision-making behaviours; participants’ experiences as a medical tourist; and participant feedback on the informational tool.

All interviews were conducted over the phone, a technique that enabled interviews to be completed with Canadians from across the country. While phone interviews are unable to capture participants’ body language, they are increasingly common due to their cost effectiveness [30].

Data analysis

All interviews were digitally recorded and transcribed verbatim. Transcripts of interviews conducted with participants who had gone abroad for CCSVI treatment were hand coded for four broad categories identified through transcript review by the authors: 1) why CCSVI treatment was sought and where it was obtained; 2) the role of having hope for a cure in seeking CCSVI; 3) the impact of MS on everyday life; and 4) the role other people played in the decision to go abroad. Coding extracts were next independently reviewed by all authors. Following review of these extracts, all authors met to discuss emerging analytic themes, paying particular attention to patterns and outliers in the discussions. During this meeting, consensus was reached on three themes central to participants' decisions to go abroad and the scope of each of these themes was established. In this paper we present a thematic analysis that examines the breadth and depth of these themes. Thematic analysis necessitates identifying themes based on patterns in a qualitative dataset and comparing these emerging themes to established findings in existing literature to help identify their importance or novelty [29].

Following identification of these themes, the first and fourth authors reviewed the full transcripts again to ensure that all relevant data had been captured. The first author then selected the quotes that best illustrated the nature of these themes. All authors independently reviewed these selected quotes and met again to confirm their interpretation along with the scope of each theme and also to discuss the findings as they relate to the existing literatures on medical tourism, patient decision-making, and health care rationing. This study adheres to the RATS guidelines on qualitative research.

Losing faith

The participants described a loss of faith with different aspects of the Canadian health system due to their inability to access CCSVI treatment at home. They felt their diagnosis with MS marked them out as different from the rest of the population and subject to inferior treatment. One participant referred to having the “scarlet letters of MS attached to my medical file.” Whereas the participants felt that other Canadians were able to access vascular treatments similar to those used for CCSVI for conditions not related to MS, their doctors told them that they could not apply these same interventions to treat their MS. As a result, one participant “didn’t have any hope” after his doctors explained that they “could lose their job if they even helped me because I have MS.” In this way, people with MS felt singled out in the public health care system: “you know they do this procedure on everyone else in Canada but they won’t treat MS patients. Anybody that’s previously labeled, we can’t have it.” This experience left one participant with the attitude that, “once you’re labeled with MS, good luck [with accessing care].” As a result, the participants felt that their treatment by the Canadian health care system was unfair when compared to the situation of other, similarly situated persons with vascular diseases not related to MS.

Blame for feelings of unfair treatment by the Canadian medical system was largely targeted at neurologists who serve as gatekeepers to specialized treatment. As a result of the perceived resistance of neurologists to the vascular-based CCSVI treatment, one participant voiced that he would not trust a neurologist “as far as I could throw one” and another mentioned “rage and a lot of anger” targeted at neurologists. This antagonism toward neurological specialists complicated care within the Canadian system for the participants. For example, one participant mentioned not visiting his neurologist before seeking care abroad because all “neurologists were against CCSVI.” This disengagement took place following CCSVI treatment abroad as well. One patient said that upon returning to Canada following treatment abroad, his neurologist “hasn’t talked to me, he hasn’t tried to contact me and I don’t see any reason why I should go see the man.” Some participants reported tension between the views of their family doctors and neurologists over the potential benefits of CCSVI treatment that created frustration. As a result, one participant described her experience of feeling stymied by her neurologist even when her family doctor was supportive of her accessing CCSVI: “[the family doctor’s] hands are tied. Because once again a neurologist has domain over my disease. Not even I have domain over my disease…it’s in the hands of the neurologists and that’s not fair.” Participants were particularly frustrated by their loss of faith in the Canadian medical establishment as they saw CCSVI treatment as a chance to address the root causes of MS rather than continue a cycle of symptom management.

Connected to this loss of faith in Canadian medical specialists, many participants felt a loss of faith in the Canadian health system as a whole and felt pushed into the health systems of other countries as medical tourists. This loss of faith took the form of a violation of the expectation that the Canadian health system would be responsive to their perceived health needs given a lifetime of supporting this system through their taxes and viewing the health system as an important part of their Canadian identity. For some, this experience led to feelings of abandonment, with one participant saying that: “when you’ve got MS you’re on your own.” Another noted that he felt as though “my country abandoned me,” saying that “there were actual signs on doctor’s offices that said if you are here to talk about CCSVI please leave.” In one case, the lack of access to CCSVI at home led a participant to develop an adversarial reaction toward Canadians generally: “your fellow Canadians would not let you have it at home. So you’re going elsewhere, that’s about all you need to know about your fellow Canadians. …at that point they are adversaries, they’re not working with you, they’re standing in your way.” In another case, the experience of having to become a medical tourist was described as “a slap in the face” by a Canadian health system in which she had had faith throughout her adult life. The financial costs of going abroad for care were another source of anger toward the Canadian health care system that would have paid for the intervention were it offered domestically in the public system: “I was very upset and disappointed that I had to basically spend $10,000…It just doesn’t make any sense and it’s not fair.” From the perspective of these participants, the Canadian health system should have provided access to an intervention that they hoped could address the root causes of MS at no additional cost to them. The refusal of specialists, health system administrators, and government officials to provide access to this intervention forced them to go abroad for care at significant personal cost, resulting in an overall loss of faith in the Canadian health system in addition to specific health care providers.

Nurturing hope

The participants regularly described their decision to travel abroad for an unproven medical intervention as driven by a range of emotions, but particularly as a result of hope for relief of the progressive decline in their health brought on by MS. As one participant described it, CCSVI was “our only hope at that time” and the care offered by local doctors did not provide “a lot of inspiration to carry on.” Hope for better health from CCSVI treatment was also discussed in terms of providing “positivity” and for bringing about a sense of excitement. For example, a participant described how hope combined with excitement shaped her interactions with the doctor she saw while abroad. This doctor “didn’t make any, any real promises he just had as much hope as I did and that was, it was nice, it was exciting, more than I had had in a long time.” While hope drove many to seek CCSVI treatment abroad, contrasting emotions such as fear were experienced as well, with one participant explaining that there was also “the fear of the unknown.” Despite some fear at the prospect of traveling abroad to access an unproven medical intervention, their new hope of arresting the progression of their MS was the dominant emotion driving participants’ decisions to become medical tourists.

Worsening health and the loss of quality of life brought on by MS was a significant factor driving participants abroad. This loss of quality of life was the key motivation for some who reported being “willing to do anything to have the quality of life that you want.” Given the progressive loss of quality of life and the perceived lack of effective treatments within Canada, seeking CCSVI treatment abroad was felt by some to be the only option for treatment, even if success was far from guaranteed. Despite this lack of guaranteed success, doing nothing was not seen as an option. For these participants, staying in Canada would be equivalent to accepting as permanent the loss of function from MS, and so any response was desirable. As one participant put it: “I knew what was going to happen to me if I did nothing. And so I was going to do something.” For others, not seeking treatment abroad would be the same as accepting death, thus making taking a chance on CCSVI treatment “a rational choice.” Due to the progressive nature of some forms of MS, many participants felt pressure to act quickly rather than wait for the possibility that CCSVI treatment would eventually be offered domestically. As one noted, “time works against you when you have MS, every day there is a little piece of you that seems to die off.” The natural progress of their disease and restrictions on access to CCSVI treatment at home, then, made the decision to go abroad for care seem clear and fully rational.

For the most part, the participants did not believe that they would be cured of MS as a result of undergoing CCSVI treatment abroad. Their measured hope was in some cases informed by the cautions of the physician providing the intervention. In one case, an international physician told a patient: ‘don’t go in expecting miracles. This is not a cure, this is symptom management.’ In another case, a patient did not receive the symptom relief that she most desired, but still saw an improvement in other areas. As a result, she reported that her “overall well-being has improved.” For another participant, symptom relief did not need to be permanent in order for the procedure to be deemed worthwhile: “if there was a chance that a person could alleviate the symptoms for even a little period of time. It’s worth it.” Some participants had their expectations around CCSVI treatment tempered by past experiences with unproven interventions, having previously been told of “quack remedies” or actually spending money on “trying for hope.”

Forming trust

While loss of faith in the Canadian health system and hope for improved health both motivated participants to travel abroad for care, they had to develop some form of trust in the specific clinics and physicians in the destination countries they visited. For some, the decision to go abroad for care was supported in part by peer support networks that participants had built up with others seeking, or who had sought already, CCSVI treatment abroad. Distrust of neurologists and the MS Society led one participant to focus on the recommendations of fellow people with MS because it “is our disease” and they are “banding together.” Within online groups, the fact that people who had already gone abroad had “firsthand knowledge” of the intervention was seen as important. Online groups on Facebook became (and continue to be) trusted sources of information for some participants, with one noting that “we were able to go to this [Facebook] group and find all of these good places and bad places to go to get it done” and another likening Facebook to the “underground railroad.” Many participants found confidence in their own research, trusting themselves to determine which sources of information were most reliable. One noted how seriously she had researched CCSVI treatment and the clinics abroad, saying: “I don’t just go off on a song and a prayer, I actually research things and then I make a decision.” In all of these cases, the participants we spoke with became heavily reliant on their own networks, both face-to-face and virtual, and online information when determining where to travel for care and which physicians and clinics to place their trust in.

While most participants had lost faith in the Canadian medical system and especially the neurologists treating them, the professionalism and credentials of their physicians abroad remained an important element in building trust in the care they would receive. This process of trust building took place in a context where several participants discussed having read media reports of Canadians suffering significant negative health impacts from accessing CCSVI treatment abroad. In one case, a participant noted that her physician abroad was “actively researching” new MS treatments and saved the life of another patient while she was in the facility. Another took pictures of the plaques and credentials on the wall of the waiting room in the facility, noting “a huge wall full of certificates.” Many participants felt able to assess the credentials of their physicians abroad prior to travel, often with assistance from online information and their support networks. Phrases used to assess these credentials included “board certified” and “experts,” with one participant noting that she “trusted the qualifications that they said these people had.” The opinions of physicians back home also served to instill confidence in physicians abroad. In one case, a participant asked her regular family physician about the credentials of her prospective physicians in India and was told that they would have been educated in the United Kingdom and so their training would be similar to that of Canadian doctors. The ability to communicate with physicians abroad prior to booking CCSVI treatment was also important to building confidence in the quality of care they would receive, and trust in these physicians. After she spoke with her international physician over the phone, one participant noted that: “I felt very, very confident.” However, for a minority of these participants, trust in professionalism was more of a leap of faith based on “faith and trust” that the physician was looking out for their best interests rather than being based on degrees and other qualifications.

The interviews revealed that participants not only needed to trust the physicians from whom they received CCSVI treatment, but also that they needed to form a certain degree of trust that their health and safety were secure in the destination country and clinic as well. In some cases, participants were already familiar with the international health systems being accessed, with one choosing a destination based on having been born there and having other family connections to that country. Another participant felt comfortable traveling to Poland as that country had joined the European Union and adopted Western medical standards, which he trusted as a quality indicator. Some participants were initially concerned about the quality of care and facilities abroad. One participant traveling to Bulgaria was reassured that the hospital had been built and funded by Japan. Another participant had heard “weird things about Mexico” and was worried that she would find “a dirty stable” instead of a hospital. She was ultimately reassured by the appearance of cleanliness of the facility and that “nurses down there, they’re dressed like nurses with white caps on and starch white gowns.” In other cases, participants felt that the standard of care they received abroad was superior to that experienced in Canada, which enhanced their trust in clinics abroad. One patient noted her physician abroad “spent probably forty-five minutes to an hour on the phone with me. I don’t even get forty-five minutes to an hour with my doctor here in Canada.”

Shifting blame and personal responsibility

Characteristic of these interviews were feelings of neglect and abandonment by the Canadian health system, specialists within that system, and even the Canadian public. These participants felt extreme frustration that a procedure that was being offered in other countries was not being offered in Canada. Similar frustration has been reported by Canadians who have gone abroad as medical tourists for orthopaedic procedures that are not readily available at home [31]. In the current study, this frustration was fueled by the fact that refusal to offer CCSVI treatment was not a result of a lack of expertise but because of an active choice by political representatives to block access to this intervention. This frustration was exhibited despite the lack of proven efficacy of CCSVI treatment in addressing the causes of MS and the fact that the government of Canada was not alone in not funding access to and warning against choosing to undergo CCSVI treatment [9–14]. For many, this decision by the government to block access to CCSVI treatment was experienced as a loss of agency – where agency is the state of being that enables us to have the ability and flexibility to problem solve [32]. This reality thrust the participants into becoming extremely active proponents of their own health, seeking out new interventions for MS on their own, communicating with similar others in person and through online communities, and sometimes even advocating for increased funding for research and access to care. A number of studies focused on the lived experience of chronic illness have documented similar individual and collective activities being undertaken by those managing chronic illnesses such as MS [33, 34]. It is not surprising, then, that many of these participants were unwilling to abandon their active engagement with managing their disease, choosing instead to seek access to CCSVI treatment abroad even if it required significant personal risk, inconvenience, and financial cost.

Diagnosis with MS is an extremely emotionally charged event [35]. While many of the participants we spoke with experienced feelings of anger and resentment as a result of their diagnosis, they remained active in seeking, if not a cure for their disease, at least access to the latest interventions that could enhance the quality of their lives. As a result of their inability to access CCSVI treatment within Canada, some of these feelings of anger and resentment shifted from their disease to the Canadian health system. Other research has shown that the development of such resentment leads Canadians to view their engagement in medical tourism as ethically defensible [36]. In many cases participants sought specific targets for their frustration, including neurologists who sought to keep MS defined as a neurological rather than vascular condition and a Canadian public who simply did not care about their needs. As a result, many of these participants exhibited an ‘us vs. them’ attitude, alienating them from their domestic health care system. Similar findings have been reported regarding the health care experiences of individuals diagnosed with contested chronic illnesses such as fibromyalgia syndrome or myalgic encephalomyelitis, wherein such individuals have been made to feel at odds with the Canadian health system [37, 38]. In the current study, this feeling of alienation from the health system was heightened by participants’ belief, gained from active research about their disease and CCSVI treatment, and bolstered by an active online community of fellow sufferers, that a treatment for their disease existed, if only their government and health system administrators would stop actively blocking them from accessing it at home.

As a result of their decision to seek care abroad, participants took control of their own health from a system that uses gatekeepers to control access to care and placed responsibility for their health into their own hands. In many senses, this shift was empowering, allowing participants to choose not only what procedures they would be given, but by what doctor, in what facility and country, and at what time. In a similar manner, the global medical tourism industry has been framed by some as enabling patient empowerment as it facilitates choice and access, though at a cost [39]. Online communities of people with MS aided in this process of empowerment by exchanging tips about the best physicians, which facilities had the shortest wait times for care, and which countries were becoming new destinations for Canadians seeking CCSVI treatment. The downside of this personal empowerment, however, was a shift in responsibility for any negative health consequences to the participants themselves as a result of seeking care abroad privately, and often without the support of their regular physicians at home. The Canadian media contains many stories of people who have obtained CCSVI treatment abroad returning to Canada having negative health consequences and being denied care by domestic physicians [25, 40, 41]. Many of the participants we interviewed specifically cited these stories and were aware that by going abroad for care they were potentially endangering their future access to follow-up or emergency care at home. More importantly, they saw their decision to go abroad for care as creating a permanent rift with the Canadian health system. That they were willing to take on this responsibility speaks to their drive to improve their quality of life, frustration with the Canadian system, and desperation for gaining access to new care options.

Hope and rational choice

The findings illustrate the distinction between participants’ hope and expectations when undergoing CCSVI treatment. Here hope can be understood as an individual’s assessment of the most desirable outcomes while expectations can be understood as an individual’s probability-driven assessment of the most likely outcomes from medical treatment. Researchers have highlighted the therapeutic importance for health care providers to balance fostering hope and providing realistic expectations to patients [42]. Finding this balance can be challenging as these concepts are often conflated. People may understand that the desirable outcomes differ from the probable outcomes, yet hope persists as a coping mechanism. In the current study, the participants’ understanding of MS as being incurable and degenerative appeared to inform the development of hope as a coping mechanism, which played a significant role in leading them to consider going abroad for CCSVI treatment. Hope is also both shaped by and shapes one’s agency [32]. Participants’ discussions of trip planning demonstrate an example of this mutually reinforcing process as the agency they exerted in traveling abroad for CCSVI therapy fostered hope for symptom-relief, while hope for symptom-relief fostered increased agency to pursue goals that were not merely determined by the expected health outcomes.

Contrary to common assumptions that individuals engage in unproven procedures due to a lack of awareness of likely procedure outcomes or potential risks [42], the findings shared here show that people traveling abroad for unproven procedures can embark on a journey that places these risks within a context of hope and even possibility. As has been shown in research focused on people traveling abroad for unproven stem cell therapies, this journey is thus undertaken within the context of considerations of both the risks and possibilities that shape individual hope that ultimately inform decisions in medical tourism [43]. The findings of the current study demonstrate the ability for this journey to bring about excitement and feelings of empowerment that shape individual’s considerations of risks and possible outcomes. Although there is concern that a strong sense of hope may push people to overlook health and safety risks when making health decisions [44], there is also recognition that the empowerment, optimism, and motivation fostered through hope can provide important therapeutic benefits for people coping with chronic illness [32, 43]. Although the current study did not assess the therapeutic benefits of the hope expressed by the participants, the findings do point to a need to better understand the role and benefits of hope in motivating medical tourists’ journeys abroad in order to complement the existing significant research focused on risk (e.g., [45–47]).

The findings demonstrate that participants’ hope was tempered with rational expectations about their CCSVI treatment outcomes. Expectations of major improvements in health or wellbeing were often tempered by physician advice, the experiences of others, or negative past experiences. Instead, improvements in fatigue, bladder control, or short-term changes in general wellbeing were expectations deemed sufficient enough to justify their choice of intervention. Whether these outcomes would have been identified as indicators of success prior to receiving the intervention, or are a reflection of individuals’ desire to attribute success to CCSVI treatment in the presence of negligible changes in health or wellbeing, is a research question beyond the scope of our study. However, given that all participants perceived their CCSVI treatments to be successful, something that further reinforces feelings of neglect by the Canadian system, differences between individual and societal determinations of ‘value for money’ in health care are important considerations to be made in relation to providing access to unproven care.

While the therapeutic benefits of hope and experiences of individuals like those who participated in this study should play a role in decision-making around the distribution of health resources in a public health system such as Canada’s, it is important to stress that supporting the hope and empowerment of individuals cannot alone justify utilizing limited health resources for providing access to an unproven medical intervention such as CCSVI treatment. Putting resources into CCSVI treatment would likely necessitate a loss of funding for other interventions where evidence backs their efficacy in improving health. CCSVI treatment has not been found to be effective in treating MS nor to have a clear biological basis for doing so. [8–14]. Those accessing CCSVI abroad have encountered health problems as a result of this intervention, meaning that the net effect of access to CCSVI could be negative for many Canadians with MS [25, 26]. Additional research is needed to better understand the impact of CCSVI treatment on MS and other chronic diseases, but this research is not supported by individual patients receiving these interventions outside of clinical trials [8]. Several jurisdictions in Canada have provided access to these trials, granting some relief to Canadians with MS who wish to access CCSVI treatment (through certainly less than enough to meet demand for this intervention) [20]. Thus, despite the experiences of the participants in this study and benefits they may have received as individuals by accessing CCSVI treatment abroad, the decision within Canada not to provide access to CCSVI treatment outside of clinical trials is very well supported on grounds of patient safety and the efficient distribution of health resources.

Limitations

This study helps to give voice to the decision-making and experiences of Canadians seeking an unproven medical intervention outside of their home country. The insights described here provide insights for policy makers seeking to address the loss of hope felt by these patients without abandoning the principle that scarce public resources should not be used to fund unproven interventions. While these findings are relevant for other jurisdictions and other unproven interventions, the experiences of these patients are highly informed by the public nature of the Canadian health system and the gatekeeper role played by family physicians and neurological specialists in that system, elements not shared by other health systems. Moreover, as the study from which this paper is derived did not set out to explore the decision-making of this particular patient group, dimensions of their experience may not be represented here. Additional study of the experiences of individuals seeking unproven interventions abroad is warranted.