FormalPara Key Points for Decision Makers

There are important and intersecting medical and non-medical factors that influence patients’ decisions on treatment.

Treatment decisions are often made in the context of social relationships and impact on daily life.

A dynamic relationship exists between perceptions of having control and not having control with regard to treatment options, outcomes, and states of “normal” life.

1 Introduction

The Canadian healthcare system is poised to adopt value models when considering drug reimbursement, coverage, clinical trials, and treatment choices [1], and it will be important to align these models to also be reflective of patient perspectives. Although the Canadian Agency for Drugs and Technologies in Health (CADTH) and Quebec’s Institut national d'excellence en santé et en services sociaux (INESSS) solicit patient and patient group input about new treatments and experiences to provide context to the evidence being assessed by expert committees, policy decisions on funding of cancer drugs should also consider patient preferences, expectations, and values. Patient values are described as the unique preferences, concerns, and expectations each patient holds, and the aim of value models is to integrate these factors as contributing to informed healthcare choice [2, 3].

In a system with a limited budget, patient experiences and values related to cancer treatment decision-making are critical to help inform policy-making. In this study, we focus on colorectal cancer (CRC). CRC was the fourth most diagnosed cancer in Canada in 2022 and is the second leading cause of death from cancer in men and the third leading cause of death from cancer in women [4, 5]. Rising CRC incidence in younger adults and late-stage diagnosis have been paralleled by growth in the cancer drug pipeline [6]. However, the emergence of new drug treatment options for people with CRC has been met with rising drug costs. A report on cancer drug spending released by the Patented Medicine Prices Review Board revealed that annual spending on cancer drugs had risen to $3.9 billion by 2019, accounting for 14.6% of the drug budget in Canada [7].

Studies that have examined patient values for CRC treatment often focus on overall survival benefit and side effects while minimally exploring subjective influencers of treatment decision-making. Decisions that CRC patients sometimes have to make may be in relation to different treatment types, different treatment lengths, and associated financial and personal costs. Even when considering different treatment types, for example, whether to have surgery or not, there are a number of surgery types that may be proposed, and different treatment lengths may be also be tied to different treatment types (chemotherapy, targeted therapy, and drug therapy) [8]. Factors that have been found to influence the choice of drug treatments in other cancers include costs associated with treatment, time commitment to treatment protocol, fear of treatment, distrust in their practitioners, lack of evidence of effectiveness, and benefits of foregoing treatment [9]. Additionally, a literature review conducted by Tariman, Cochrane, Doorenbos, & Schepp (2012) found that personal beliefs, values, ethnicity, decisional control preferences, previous health-related experience, perception of the decision-making process, and other personal factors influenced older adults’ choice of cancer treatment [10].

While patient values are critical to consider in policy-making, they are challenging to measure and have generally been centered on health outcomes rather than non-health outcomes or factors that influence treatment decision-making by patients. The aim of this study was to understand how the values and experiences of people with CRC and their caregivers’ inform their perspectives about new and emerging cancer drug treatments. We applied qualitative methods to identify key personal, social, and system factors about how the values of people with CRC and their caregivers’ values influence their treatment decision-making. We examine these values through the lens of Sherwin’s theory of relational autonomy to understand the complexity of patient experiences and priorities during cancer drug decision-making in a more holistic manner that extends beyond medical considerations [11].

2 Methods

2.1 Conceptual Framing

Sherwin’s ethical theory of relational autonomy allows stakeholders to understand a person’s values, beliefs, preferences, and commitments in relationship to key interpersonal, systemic, and historical contexts [11, 12]. We employed Sherwin’s theory to help us understand how social relationships, power dynamics, and other interpersonal factors may influence individual autonomy, preferences, and values. While people have independent values, the theory of relational autonomy recognizes that patients’ healthcare decisions are made within intersecting social, political, and interpersonal contexts [12]. The theory of relational autonomy highlights that people with CRC may make treatment decisions on the basis of their connections to important others, and within the context of their larger social network and access to structural resources, such as financial support and child or elder care.

We applied this lens from Sherwin’s theory in understanding the values and experiences of people with CRC during cancer drug decision-making in a more holistic manner that considers both medical and non-medical factors. In the context of cancer drug treatments, maximizing “gains”—whether it be the extension of life or improvements in quality of life—are often seen as primary goals of treatment by physicians and patients alike. Other important goals were respect for patient autonomy, a pillar of shared decision-making, and the provision of quality healthcare. The enactment of the ethical principle of autonomy ensures that decision-making considers what aspects of drug treatments people with CRC value, which may be shaped by factors that are often not considered as part of the proposed treatment.

2.2 Study Population

Canadian adults (18 years and older) living with non-metastatic or metastatic CRC were invited to participate in this study. Patients were excluded from participating if deemed too ill or cognitively impaired by oncologists or the research team, or if they did not speak English.

Eligible caregivers included Canadian adults (18 years and older) who had experience supporting one of the patient participants with CRC in their healthcare decisions. Any relationship was considered acceptable, including spouses, family members, friends, or fellow cancer survivors.

2.3 Participant Recruitment and Sampling

Participants were recruited from oncology clinics at the Princess Margaret Cancer Centre (PMCC; Toronto, Ontario, Canada) and through the patient network of Colorectal Cancer Canada (CCC). Purposive sampling strategies, more specifically variation sampling strategies, were utilized to encourage diverse perspectives on the phenomenon of interest from individuals of different ages, sexes, and education levels (Table 1) and to maximize thematic concepts [13]. Patients and their caregivers attending routine appointments at PMCC who met the inclusion criteria were invited to participate. Recruitment via CCC was conducted through email invitation.

Table 1 Participant demographics (N = 18)
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2.4 Data Collection

Interpretive qualitative methodology guided the use of structured interviews to elicit the views of people with CRC and their caregivers’ values, and to explore how their values influence treatment decision-making. Participants shared their experiences and insights about CRC drug treatments and associated decision-making, perceptions regarding treatment alternatives while considering their benefits and risks, and views on new/emerging cancer drugs. Data for this study were collected from April 2017 to November 2017.

After obtaining written or verbal consent, baseline data on each participant, including demographic, disease, and treatment history information when applicable, were collected. Afterwards, patients and caregivers participated in 1-h structured interviews, via the telephone, with study authors (R.M. and J.A.H.B.; Appendix A: Interviewer Information). These interviews were conducted either individually or in dyads and digitally recorded for transcription (Online Appendix B: Patient Interview Guide and Online Appendix C: Caregiver Interview Guide). Interviews with dyads were conducted to better understand similarities and differences in perspectives with regard to treatment decision-making. The interviews with CRC patients and caregivers were conducted separately. Participants were asked open-ended questions on their values, experiences of oncology drug decision-making, and what outcomes of treatment they prioritized most when various treatment options were presented to them.

2.5 Data Analysis

Interviews lasting between 60 and75 minutes were transcribed verbatim and were analyzed via NVivo, a qualitative data management software. Guided by a qualitative phenomenological approach and Sherwin’s ethical theory of relational autonomy, a thematic analysis of transcripts was conducted by study authors (R.M., M.J.E., J.A.H.B., and S.S.) [14]. This analysis involved the development of codes as part of the initial phase of analyzing the raw data, a codebook was generated, and themes identified and refined from six categories under which the data were organized. Recruitment and interviews ended once thematic saturation was achieved, no new codes were being generated from interview data, and all themes were felt to be fully conceptualized [13]. Thematic saturation was defined as having a lack of new ideas or themes identified in subsequent interviews.

2.6 Ethics

Ethics approval was sought and obtained from the University Health Network Research Ethics Board (#17-5004) and the University of Calgary Research Ethics Board (# HREBA.CC-16-1021_REN6).

3 Results

3.1 Demographics

A total of 12 people with CRC and six caregivers were recruited for the study. The majority of patient participants were between 50 and 60 years of age, had metastatic disease, were married, and had private drug coverage. Caregivers were mostly female spouses of patient participants (Table 1).

3.2 Thematic Analysis

Thematic analysis from the interview transcripts generated a total of six categories on the basis of the coding of the data (Appendix D: Codebook): experiences with cancer, symptom experiences, perceptions of risks and benefits of drug treatments, resource allocation, relational autonomy, and decisional values. The categories and associated codes were further analyzed to identify four overarching themes, and subthemes within each, that influence treatment decision-making in the medical and social context of participants’ lives: (1) treatment outcomes and effectiveness, (2) intrapersonal and interpersonal factors, (3) quality of life, and (4) survivorship and prognosis (Fig. 1). These overarching themes reflect the intersecting aspects of treatment on which patients place a high value when making CRC treatment decisions.

Fig. 1
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Overarching themes that influence CRC treatment decision-making for people with CRC and caregivers

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3.2.1 Theme 1: Treatment Outcomes and Effectiveness

Several factors were cited as influencing participants’ treatment decisions. Clinically, participants described that the availability of information and evidence, side effects, and perceived clinical benefit or effectiveness of the treatment were important facets. With the fast-growing availability of new drugs on the market, patients felt uneasy about choosing cancer drugs that had limited evidence or information available. One patient captured this sentiment by explaining that “there’s been so many new drugs [that] go on the market and then they find several years later that, hey, maybe this wasn’t such a good idea; this has caused constant problems for people, but I think you better put me at cautiously optimistic” (TKT3947). Information about the side effects of a treatment modality also affected treatment choice. Patients were concerned about balancing the potential benefit of treatment and the long-term side effects of treatment: “If a drug, for example, damaged your liver or gave you heart problems or degenerative bone disease or anything like that, none of those things would be good. Anything that would permanently change your life” (TKT3941). Caregivers also held similar concerns, with one stating, “I didn’t like the fact that perhaps she would experience permanent nerve damage in her hands and feet. I thought for somebody young, that could be incredibly troublesome. The rest of them, like any… it’s like anything else” (TKT3941). Despite this, patients and caregivers felt that understanding the benefits or risks of specific treatment options allowed them to feel more confident in making a decision. For instance, one patient described that “[they were] given enough information that [they] didn’t have any problems with the recommendations, because in the long run, [they] felt that the end goal of making [their] tumor smaller and easier to operate on was worth all of [it]” (TKT3938).

Personal, psychological, and social impacts of treatment—that is, the psychosocial impact of treatment and to what extent participants perceived the treatment effective—also served as facets of the decision-making process. In viewing the patient as the “self,” participants expressed wanting to maintain an internal locus of control—in which a person believes that their behavior is guided by their personal choice rather than external factors—to ensure that the drug minimally affected their body negatively, while managing the impact of drug treatment, such as side effects, on important others. With CRC often shifting the health locus of control externally—whereby the individual does not have personal control over situations and their behaviors [13]—the interviews helped study authors discover that patients often chose the treatment option that allowed them to be self-sufficient and in control of their own bodies. While patient participants were accepting of help, one patient described this factor by stating, “I don’t mind help as long as long as I can’t do it for me… if I can do something for myself, I don’t like to accept help for something I can do for myself. So, I’ve always wanted to see what I can do” (TKT3947). Patients also indicated that they can better maintain the ability to take care of themselves if the potential impact of the treatment on their other body systems (for example, side effects of treatment) is minimized. Participant TKT3921 explained this priority by saying, “so, it really would have to be, the truth is, those side effects would have to be not to the point where they’re going to damage another organ or something. It’s because if they are, then most likely I would not want that, because I think having one issue is better than having three quarters of an issue and another issue to go along with it, if you understand what I mean.” (TKT3921).

Patients and caregivers were also focused on the treatment experience during the decision-making process. Participants reported difficult trade-offs when it came to discussions about accepting shorter or longer treatment durations, more effective treatment modalities with increased side effects, and the balancing of need for treatment with quality of life. One participant explained weighing length of treatment time with progression-free survival: “It would depend on how long the treatment was. If they said, ‘Okay, you’re going to have to live like this for 5 years and then we’re going to guarantee that you can live another 25,’ as opposed to, ‘Well, we’ll give you this one; it’s only a year of treatment and then you may be good for 25 years, but we can’t guarantee it.’ It’s a really difficult tradeoff. So many people live in the now and if you’re experiencing pain or discomfort for a great length of time, I think it changes people” (TKT3941). Another participant paralleled this belief with balancing treatment side effects, additional survival, and improved quality of life post-treatment: “managing the symptoms, depends on how severe the symptoms are and also depends on how much extension of life and decent life, you know. So, I have to weigh them against each other and see. And that’s a tough choice, because again, you group people together, they’re all… we’re also individuals and we’re… we don’t exactly experience the same symptoms the same way. So, you know, as I was saying earlier, other people and I, we have the same symptoms, but mine was much more tolerable than theirs. So, that’s a tough decision. I’m… I don’t know which way to go” (TKT3921). This participant draws attention to the subjectivity of personal experience of drug treatment and how side effects may be experienced differently or to varying degrees for different people, which may influence how individuals balance or weight the trade-offs between side effects, survival, and quality of life.

While these experiences are limited to patients receiving care in Canada, some patients felt that the treatment options provided are less effective than in other countries due to differences in drug policy or regulation. Some participants described either themselves or others pursuing treatment options in countries they perceived as being more “lenient” in drug access. Participant TKT3947 explained this belief by saying, “I’ve been hearing from a lot of friends in all of this, they should listen to Europe…They have more of a cure and control than we do in Canada. And you know, I know one lady, she was supposed to die 3 months later. She had cancer and I think in the stomach and the doctors, the specialist gave her 3 months to 6 months to live… But, they cured her. She came here; she took an MRI [magnetic resonance imaging] just to examine her body. They didn’t find a single cancer cell in her. Not one. They removed it… And this was, I think about, yeah, this was 2 years ago and she, like, she’s a grandmother now. She’s jumping up in joy. This is why I think Europe has ways of either controlling it or removing it, one or the other and Canada doesn’t want to listen, not doesn’t want to listen, they just think that, ‘Oh, we’re not ready for this,’ or ‘We’re still trying our treatment,’ and stuff like that” (TKT3947). This participant believes drug development and the regulatory landscape is less innovative in Canada, and this circumscribes the types of drug treatments available as options for decision-making within the Canadian health system.

3.2.2 Theme 2: Intrapersonal and Interpersonal Factors

Under the theme of treatment, factors associated with decision-making were primarily focused on clinical impact and effectiveness. Participants also considered a series of intersecting intrapersonal and interpersonal facets of their life and relationships that affected their choice of drug treatment.

Intrapersonally, participants recount undergoing processes of self-reflection on their beliefs. In viewing cancer treatment as a taxing but necessary part of managing their disease, participants often referred to, or challenged their personal abilities to decide on treatment. For instance, one participant illustrated this ability to self-reflect when asked about novel treatments by saying, “when it comes to new things, I’m pretty cautious. I like to find out about it, what to expect and… but I, at the same time, I have no problem with trying to find something new, you know. You know, you’ve got to try something new, or you’ll never be able to test anything. So, I have no issues with trying anything new” (TKT3921). This quote highlights a rationalization process that other participants also described doing, often reflecting on thinking of their views on life, death, relational support, and survivorship when weighing treatment decisions. This may describe a reiteration or affirmation of patients’ view of themselves and their identity, as a result of needing to make a decision about treatment. In this way, patients were afforded the opportunity to practice their autonomy skills—skills of reflecting and, in this case, re-affirming what values, beliefs, and desires were important.

Apart from the effectiveness of the drugs, participants placed great importance on their clinician as decision-maker. Treatment recommended by their clinicians, and the perceived confidence that participants placed in their healthcare providers highly influenced treatment choice. The following quote highlights the weight that patients and caregivers placed on their healthcare providers’ recommendation: “the reason for pursuing surgery is because the doctor, when she and I spoke, we spoke for a while, and I believe she believed that surgery would be the best option and I believe her. And that’s why I chose that… She was candid. She was… and she seemed to have a lot of conviction in what she was saying. And I just believed her and trusted her” (TKT3921). Another participant paralleled this concept by stating, “absolutely she [the doctor] recommended surgery. I think that was her first and foremost intention, you know. I think she thought that would be the… the very best thing for me at the time. And, because I was very ignorant to everything, I had to agree, because she’s, you know, a surgeon who’s done this before. So, at that point, I was easily influenced by doctors and anybody who knew more than I, because I knew so little, so… about anything. I would just, you know, go along with whatever caregivers and the professional thought” (TKT3942). This statement also highlights a perceived lack of control that participants felt about treatment options, thus reinforcing a greater sense of reliance on and trust in their clinicians. These two quotes exemplify patients deferring to their care providers. However, in the first case, the patient mentions that they “believed” and “trusted” their doctor that surgery would be the best option, whereby the patient is affirming the doctor’s authority. In the second case, the language used describes a sense of ignorance, whereby the patient is “easily influenced,” thus suggesting more of a defeated perspective from someone who may have wished for more information and control.

The impact of the treatment process on family, loved ones, and caregivers was shared by both caregivers and patients. Particularly, caregivers described a responsibility to establish or maintain normalcy or to take on many day-to-day tasks as a way of supporting their patient counterparts. For instance, one caregiver said, “Actually, we try to carry on life like it was. We still talk about things. Like I say, we do our Sunday get-together with the family every week. I’ve come to [redacted] with her. I stayed at the lodge with her, and I go to appointments and I’m delighted to meet her doctors and I’m delighted to hear her bitch about not feeling well and complain about whatever it is that’s troubling her for the day and just providing an ear, that’s all…and mostly it’s just supporting any choice that she wants to make in the day” (TKT3941). Alternatively, patients seemed especially concerned about the impact treatment had on their caregivers both logistically and emotionally. Logistically, with specific treatments requiring a considerable time commitment, patients disliked that their caregivers would have to manage their days to accommodate for certain treatments. For instance, one patient explained the complicated logistics that she and her caregiver had to undergo to attend treatment sessions: “My husband had to take a day, an entire day off work to do that. It’s quite a to-do with the logistics of it all. And sitting around the hospital, honestly, is a downer psychologically. It’s a lot of waiting, a lot of sitting around… My husband has to take time off work. It’s an entire day. You lose an entire day just to come down for chemo, pretty much. It’s kind of insane for a 2-h infusion. So, it’s a lot of waiting.” (TKT3942). This patient’s experience highlights how emotional well-being and degree of caregiver support are influenced by the structural context of seemingly inefficient care delivery that involves a 2-h infusion taking 12 h at the hospital. Additionally, it is worth noting that this patient’s husband had work flexibility, which allowed for him to accompany the patient to her all-day appointment. The impact of having flexible working conditions and associated ability for families to manage financial implications if time away is unpaid should not go unnoticed in the context of treatment decision-making. These social and structural advantages are not equitably distributed across groups and individuals in society. Those who face marginalization due to intersecting identities such as race, gender, ethnicity, and sexuality are particularly negatively impacted. [15]

Emotionally, one patient explained involving their daughter in the treatment decision-making process and concerns about the psychological impact that it may have on her daughter. This participant shared “discussing all the time with her [daughter] regarding different treatment of cancer; how can it affect; what can it do to you; how do you feel; do you feel comfortable; if things go wrong; if I’m [the patient] gone, can you manage yourself; are you strong enough to hold…” (TKT3947). In relaying these comments, this patient appeared to be most concerned with her daughter’s ability to cope with her treatment decisions, ensuring that her daughter understands the treatments and associated side effects and, importantly, assessing her daughter’s potential for resilience if things take a turn for the worse.

At the micro and meso levels of social interaction, patient participants considered striving to “appear normal” and the impact of their treatment on relationships with community members in their decision-making process. One participant described this through the following quote: “Well, at that point, when I was doing all this, making all these decisions… I like to be able to still go out without somebody looking at me and say, ‘Boy, this person definitely has some sort of an issue or a problem or something,’ you know” (TKT3921). Another participant outlined a socio-cultural example of the impact of undergoing treatment by stating that “…I really don’t want to live like a zombie or as a mutant to anyone or even face anywhere, because I’m Italian; I go to a lot of places. I go to clubhouses; I go to these dances; these parties that they throw at a hall. You know, I sit there and talk to old friends. I really don’t want to face them just looking straight at them and not saying anything” (TKT3941).

Other notable considerations with regard to intrapersonal and interpersonal relations related to social networks, and as one participant framed it, “I’ve always said with managing other people, I hate to say this; it sounds strange… managing other people and their reactions or their pity or their grief is sometimes harder than managing your own or it really, what’s the word I’m looking for, it… I’m trying to find the word. It makes it worse” (TKT3942). Participants also suggested that they had to be intentional in who participated in their personal care, as anything that was seen as having the potential to undermine their dignity or self-esteem was seen as problematic. In terms of asking for and receiving help, one participant made a clear distinction and stated, “It all depends on who’s helping me, because there are people who will help you just because they feel obligated and those… there are those who will help you because they really want to help you, you know. So, it all depends on who is helping” (TKT3947). Study participants also commented on whether their health status could be achieved or retained due to accepting or foregoing treatment, and the impact of the stigma associated with certain treatment options.

3.2.3 Theme 3: Quality of Life

Participants detailed the impact of treatment on their quality of life—comprised of physical well-being, social well-being, emotional well-being, and activity [16]. With the side effects of CRC treatment being particularly burdensome on patients, participants reported that their choice of treatment was impacted by a desire to maintain functional cognitive ability and self-identity and maximize physical well-being. A participant recounts questioning the value of long-term cancer treatment if it meant relinquishing cognitive function: “What good is treating cancer for 3 or 4 years if you don’t have… if your mind’s not working… functioning properly? I’d rather have a straight mind. Well, I’d rather see how the chemo’s doing first before I really can go to a new drug, a new drug treatment” (TKT3947). As described under the theme of treatment, part of maintaining self-identity for participants meant maximizing the level of independence and control they had during treatment. This idea is further discussed in the context of quality of life by a different participant: “Well, first and foremost, would I have to wear that bag for the rest of my life. That was my first concern. You know dying wasn’t, you know. And a lot of things. Would I be able to go back to work as normal and, you know, would I be able to function independently, because I’ve always been an independent person from the time I know myself?” (TKT3921). When questioned on the impact of treatment and diagnosis, this participant reported that changes to bodily autonomy and function held more of a psychological impact on their self-identity. For instance, one patient recounted being hyperaware of how their body felt during treatment, and subsequently their surroundings in response to the addition and removal of aids (e.g. urinary bag).

Participants reported having to adjust their expectations in response to major changes in their life caused by CRC diagnosis and treatment. For patients’ themselves, they described having to accept their current condition to receive treatment that may be lifesaving. Participant TKT3938 illustrates this by saying, “…because I tend to be, at least I was a very high energy, pretty high drive person. Not having the energy to do, like, absolutely everything I want to do in a day is certainly frustrating, but I also think that giving, sacrificing, you know, some day-to-day activities or, you know, pushing for a cure and being treated is totally worth it … I have to scale it back to 57. That’s okay by me, because in the long-term, the tradeoff, even if I suffer from long-term effects, I think adjusting to a new normal, the tradeoff being alive as opposed to, you know, not being alive, is something that I’m totally okay with dealing with” (TKT3938).

Within this theme, participants conveyed having to consistently balance and weigh the impact of treatment with the impact on quality of life. For example, “…if I was told I was, like, Stage 4 and terminal I would probably want to have definitely treatment, but if treatment was, like, going to make my quality of life so poor that I couldn’t do anything except for sleep, I would rather live life and experience as much life as possible while I was still, like physically able to do that…to a point where either pain or actual physical symptoms were making it impossible for me to do even simple day-to-day activities, I would rather experience life to the best of my ability until I came to a point where I couldn’t, where I had to be hospitalized” (TKT3938). While many participants viewed the tradeoffs of treatment as a “personal choice to take anything that’s going to make you ill or cure you for that matter” (TKT3941), others considered the difficulty of these treatment decisions at the healthcare system level, stating that they would choose to have fewer drugs on the market that were more expensive, but that offer significant benefit, than more drugs available that did not offer significant benefit while also causing side effects. Patients and caregivers also considered the economic evaluation of a drug, and their financial status when making treatment decisions. Interestingly, participants were more concerned with the effectiveness of a novel drug rather than its actual cost to themselves, sharing that, “first and foremost, the best thing for you to do is control the cancer and by whatever means. And about the government funding half of this, you know, I don’t really care about all that. All I care about is effectiveness of the drug” (TKT3921). Additionally, there seemed to be a general sentiment that drug coverage should be balanced by the needs of individuals and those of an entire healthcare system. We found that participants believed that the government holds a responsibility (although described to different degrees) toward funding expensive drug treatments for cancer patients, solely if it is deemed effective at “curing” their cancer and beneficial to patients’ quality of life. However, these perceptions may be biased given that most participants in this study had an annual income of $60,000 (n = 6) or more at the time of participation.

3.2.4 Theme 4: Survivorship and Prognosis

A large component of participants’ treatment decision-making involved weighing survivorship and prognosis with current or future quality of life. Specifically, if the benefit of treatment was perceived to be short-lived or to take many years to achieve, patient participants stated that they would instead forego treatment. For example, one participant outlines this tradeoff by saying, “Speaking really from my perspective or what I would wish for people that can… if something was going to rip away 5 years of their life, I think it would depend on their personal situation. If they were 80 years old, I think, ‘Well, I’m not going to be better until I’m 85,’ I think that they wouldn’t bother” (TKT3941). Considering death as a potential outcome, patients referred to their own values and priorities, ultimately having to choose between the perceived harsh experience of treatment and a “minimal” extension of life. One participant illustrated this choice in the following quote: “yeah, it doesn’t matter how I fight it, if I see, because I fight it. I try to fight it as much as I can and I don’t care how long it takes, but after six months, if it’s not working, yeah, I would have to live with it…Well, you know [the treatment], making me sick and really weak, I’d rather live with the cancer, because you know, I look forward to my grandchildren. I have twins. I have a young daughter and I look forward to spending my last minutes with them. So, it’s not a choice I want to have; it’s a choice I have to make, if I have to make this decision and I talked to my family about it” (TKT3947).

What our results suggest is that understanding patient values in CRC treatment allows clinicians, care providers, and members of expert committees evaluating drug reimbursement decisions to better understand their choices within specific personal, relational, systemic, sociocultural, and historical contexts. We found that a patient’s choice of treatment was complex and was affected by a number of factors, including their understanding of the perceived clinical benefit or effectiveness of the treatment, the requirements of treatment, available information, and evidence on efficacy. While research evidence is seemingly objective, an individual’s socioeconomic status, important relationships, ethno-racial or other identities, and larger structural context may impact treatment decisions that are often not considered or assessed in the clinical context.

4 Discussion

This qualitative inquiry sought to elicit the values of people with CRC and explore how their values influence treatment decision-making, specifically considering the trade-offs to be weighed amongst alternative treatments. Utilizing a phenomenological approach guided by Sherwin’s ethical theory of relational autonomy, we identified four overarching themes that influence people with CRC’s treatment decision-making: treatment outcomes and effectiveness, intrapersonal and interpersonal factors, survivorship and prognosis, and quality of life.

An important consideration for people with CRC and their caregivers was their perception of “wellness” when choosing treatment, and how the treatment would allow them to move toward better physical and mental health. In a 2011 study, Beech, Arber, and Faithfull had found that people with CRC “existed” in a state of wellness and illness and that the state of “illness” would be the focus of a person with CRC’s life if their symptoms “disrupted their daily life” [17]. These findings are consistent with the factors that were shared by participants in the current study, which included a sense of normalcy, the impact of their treatment and illness on others, and control over their bodies. Wellness was understood and perceived not only internally but also externally where it is subjective but socially constructed and influenced. Similar to the findings of Torosa-Martinez et al., (2023), participants in this study made reference to “returning to their pre-cancer self” and understanding wellness and illness as part of accepting their identity as a person living with CRC [18]. Wellness and illness are subjective terms and are defined in various ways by individuals, but what constitutes wellness or illness for people with CRC is shaped by a number of factors, including culture, religion, age, and the views and perspectives of others, for example, not appearing “normal” to others, that may lead to the person with CRC internalizing a sense of illness even if they feel well—showcasing an overlap and bidirectional influence of internal and external conceptions of wellness.

For a person with CRC their ability to maintain their social life and contribute to the lives of important others with minimal “disruption” was important in their treatment decision-making. Strong interpersonal relations were found to improve well-being, motivation, and quality of life among CRC survivors. As such, it is important to consider interpersonal factors in the context of treatment decisions being compatible with the individual’s life, family dynamics, and social well-being [19]. What this meant was that, if treatment was going to be extended over very long periods of time, and not something a caregiver could help support—logistically or emotionally—or would lead to social or functional impairment, such factors could sway decision-making. Functional impairment and its impact on a person with CRC’s social life or family life or on a spouse or partner has previously been reported in the literature [20], and how it may also impact an individual’s ability to engage in future planning.

An interesting consideration for understanding treatment decision-making is the twofold role that a strong social support system may play. As McGeechan et al. (2018) found, participants in their study reported that not only did individuals with CRC struggle with their illness, but their family members did too [21]. Participants in the current study also referenced the notion of burden to others, whether it be financial, emotional, or in some other way, that they considered when making treatment decisions. In one way, a strong social support network can help support and facilitate the treatment decisions that people with CRC make and the associated logistics, but alternatively, the stronger the social support network, the stronger the influence the social support network has toward the decisions, and this may impact the autonomy of the person with CRC [22, 23]. Social support can enhance patient autonomy and decision-making by assisting with, for example, communication about treatment between physicians and patients, and driving the patient to treatment appointments. Social support may detract from patient autonomy and decision-making when undue pressure is placed on patients to make a treatment decision that the patient wouldn’t have otherwise made or that is not aligned with the patient’s values. Additional investments in patient support programs and patient advocates may help strengthen the decision-making capacity of individuals with CRC.

What the findings from this study also highlight is that patients’ strong connections to others may challenge one’s ability to determine and act in accordance with their own values and preferences, which may lead to tension in the clinical context between patient and clinician regarding what is the most appropriate plan of treatment. A number of individuals in this study exercised significant relational autonomy by engaging in relational self-reflective processes that questioned how their decisions would impact others, the tradeoffs that they were willing to make, and considered the economic and financial impact of their decisions. These participants served as important examples of autonomy skills where they are able to reflect, imagine, and consider alternatives and impacts. While the extent of treatment effectiveness on the course of the disease may be paramount, patients in our study also made treatment decisions on the basis of their current social and economic resources, and how the treatment will impact their quality of life, which may not always be aligned with what their clinicians’ perceptions of what is important for treatment decision-making. The overlapping influence of these factors may not be fully appreciated by clinicians when making treatment recommendations.

Survivorship and prognosis were discussed by all participants, and the adoption feasibility and ability to self-manage treatments were also important considerations. While some decisions were perceived as simple—for example, one participant spoke of making the choice between “wearing a bag or dying” as straightforward—other decisions were framed around controlling the cancer first. In addition, if the treatment would cause another issue (e.g., liver damage), participants weighed the option of having to manage and control one issue or to potentially deal with multiple compounding issues, and how this might start to feel as though things were moving toward being “out of control.” The notion of control was an important topic during interviews, and similar to the findings of Cuthbert, Farragher, Farrer, and Cheung (2021), there exists a dynamic relationship between perceptions of having control and not having control with regard to treatment options, outcomes, and constantly evolving to new states of normal [24]. From this study, the data on patient values related to drug treatment highlight that treatment effectiveness and quality of life remain important considerations, but need to be understood in the broader context of the patient’s life, and the extent to which a CRC patient’s treatment decision-making may be an attempt to regain “control” over the varying factors that are shaping their life.

5 Strengths and Limitations

A number of limitations of this study need to be acknowledged. While the overall sample size (N = 18) was sufficient for qualitative work and achieved thematic saturation, the sub-group sample sizes (patient and caregiver) were small for saturation, although they did provide exploratory insights into the larger phenomenon of interest. With the majority of patients being of mid-life, there may also be differences in patient values across age groups that were not fully captured in this study. To this point, this study is based on the experiences of those who spoke English, and this may have meant that cultural considerations were overlooked or not explored in detail, and may be an area of future research. Furthermore, the participants were limited to the mechanism of recruitment within a publicly funded healthcare system. Exploring people with CRC and caregiver treatment decision-making experiences in non-single-payer health systems may reveal additional or unique contextual factors that shape CRC treatment decisions.

6 Conclusion

Using qualitative methods to elicit the values of a sample of Canadians with CRC and their caregivers is important for understanding the intersecting factors that patients value when making CRC treatment decisions. The theory of relational autonomy provides a lens to assist with identifying the broader social and structural influences on personal values and treatment decision-making, and how these influences potentially support or detract from patient autonomy. Specifically, this work signals the importance that CRC patients place on independence, dignity, and factors that shape decisional autonomy. To our knowledge, this is the first study to utilize the theory of relational autonomy to understand patient and caregiver values in the context of treatment decisions in CRC. On the basis of the findings of this study, continued exploration of values in treatment decision-making and how much CRC patients value or weigh the different aspects of treatment would help to inform frameworks for drug funding and policy decision-making as well as enhance patient-centered care.