Communication About Complementary and Alternative Medicine When Patients Decline Conventional Cancer Treatment: Patients’ and Physicians’ Experiences

Abstract

Background

Complementary and alternative medicine (CAM) is a broad set of nonconventional practices used alongside or instead of conventional treatment: The latter poses obvious risks related to cancer prognosis. Patient-physician dialogue about CAM is crucial for patient safety and mutual trust. Little is known about communication in the rare situations when patients decline recommended cancer treatment and consider using CAM. The objective of this study was to explore patients’ and physicians’ experiences from situations when patients decline recommended cancer treatment and consider using CAM.

Materials and Methods

Semi-structured interviews were carried out with 7 CAM-using cancer patients who had declined some or all conventional treatment as well as 10 physicians from oncology and palliative care. Framework analysis was used.

Results

Regarding treatment choices, there was a dissonance between physicians’ focus on medical reasoning and patients’ expression of complex values. Physicians’ difficulty in understanding patients’ treatment decline was exacerbated when patients considered using CAM, impairing communication even further. Inequalities in roles resulting in power struggles risked pushing both parties toward extreme and inflexible standpoints. Despite these challenges regarding treatment choices and hierarchical roles, both parties considered open and respectful communication as crucial.

Conclusions

This study highlights the difficulty of shared decision-making in practice when patients’ and physicians’ views on treatment decisions deviate in clinically challenging situations. Our results point to a need to address the complexity of these situations, pay attention to patients’ values, and improve knowledge among physicians about CAM.

Little is known about communication in situations when patients decline recommended cancer treatment and consider using complementary and alternative medicine (CAM). This article explores patients’ and physicians’ experiences in such situations.

Implications for Practice.

Communication is crucial in situations when patients decline recommended cancer treatment and consider the use of complementary and alternative medicine (CAM). Physicians must be aware of patients´ possible complex values leading to decisions hard to understand solely from a medical perspective. Awareness about inequalities in roles, improved knowledge about CAM, and to pay attention to patients’ values are prerequisites for an open and respectful dialogue to facilitate shared decision-making in these clinically challenging situations.

Introduction

Communication concerning complementary and alternative medicine (CAM) between patients with cancer and physicians is crucial to ensure patient safety and mutual trust.^1,2 However, research suggests that many patients with cancer hesitate to disclose their CAM use to physicians^3,4 and that oncology professionals lack knowledge about CAM.^5-8 While most existing literature explores patients’ or physicians’ experiences in relation to CAM use as a complement, less is known about situations when patients decline conventional cancer treatment and consider CAM.

CAM is a broad set of non-conventional practices including natural products, mind-body therapies, and entire medical systems. CAM usage among patients with cancer is common, with usage reported to be approximately 50%.^9,10 The term “complementary” refers to use alongside conventional medicine, whereas “alternative” indicates use instead of conventional treatment^11,12; the latter involves obvious risks related to prognosis.^13-16 Although sparingly investigated, a recent systematic review¹⁰ suggests that at least 0.01% of patients with cancer decline conventional treatment in favor of alternative practices. A handful of qualitative studies have investigated patients’ reasons for such choices. Reported reasons include a strong wish for ­decision-making control^17,18 and a strong belief in healing rather than curing in the context of mind, body, and spirit.^17-19 Other reported reasons included CAM use before diagnosis,¹⁹ the perception of CAM as effective^20,21 and less harmful compared to conventional cancer treatment.^20,21 Additional reported reasons included previous negative experiences of conventional treatment (own experiences or in relation to significant others),^19-21 perceived severity of side effects from conventional treatment,^17,18,20,21 and poor patient-physician communication.^18,20

To our knowledge, there is a lack of research regarding physicians’ reasoning in situations when conventional treatment is declined, and CAM is considered. Physicians’ views on situations of treatment decline as a phenomenon of its own has been explored in some qualitative studies. For example, results from one study suggest that oncologists’ respect for patients’ autonomy may depend on whether treatment goal is curative or palliative.^22,23 Similarly, another study reports that oncologists tended to dichotomize such patients and their decisions depending on the stage of disease (curable/palliative), patient characteristics (active/passive), or patients’ decisions as rational/irrational.²⁴

The potentially severe clinical consequences of patients’ declining cancer treatment, and the scarcity of studies focusing on the specific situations where patients decline conventional cancer treatment and consider CAM, warrant deeper investigation.

The objective of this study was to explore patients’ and physicians’ experiences in situations where patients decline oncological treatment and consider CAM use.

Material and Methods

Study Design

The epistemological foundation of this study is inspired by interpretive description, which is philosophically aligned with interpretive naturalistic orientations. Accordingly, this study acknowledges reality as complex, constructed, and contextual as well as ultimately subjective in nature allowing for shared realities.^25,26 While interpretive description allows for various analytical techniques, the analytical method of framework analysis, as described by Gale,²⁷was used as it is a flexible analytical tool, not aligned with a particular epistemological approach, with a well-described step-to-step methodology suitable for a multi-professional research team with varying experiences with a qualitative methodology.

Study Participants

Informed Consent

Potential participants were contacted by phone (patients) or email (physicians) by one of the interviewers, who presented the study’s aims and procedures. Interviews with interested participants were scheduled at their chosen location. Before the interview, the interviewer re-informed orally and by written information including outlining the voluntary nature as well as the confidentiality of research participation. Participants who agreed to this gave informed consent orally.

Patients

Adult patients with cancer (n = 7) living in Sweden were purposefully recruited from oncology departments, palliative home care, a hospital for integrative medicine, and via patient advocacy groups based on their choice to decline some or all recommended oncological treatment and use CAM. Variation in age and diagnosis was strived for (Table 1). All patients who were contacted agreed to participate in the study.

Table 1.

Demographic and clinical characteristics of included patients (n = 7) and physicians (n = 10).

Characteristics	Patients	Physicians
Gender
Female	6	6
Male	1	4
Age years median (range)	61 (34-73)	47 (36-66)
Marital status
Living alone	3
Partner/married	3
Unknown	1
Children/grandchildren
No	0/5
Yes	7/2
Cancer diagnosis
Breast cancer/metastatic breast cancer	2/2
Hematological maligncy, palliative	1
Prostate cancer, metastatic	1
Lung cancer, metastatic	1
Clinical setting
Oncology		9
Palliative care		1
Research experience		4
Work experience years median (range)		18 (7-49)

Physicians

Eighteen physicians were contacted via email and invited to participate in the study. Variation in years of professional experience, clinical setting, research experience, and attitude toward CAM was strived for. Ten physicians accepted the invitation (Table 1).

Data Collection

Interviews were performed by 2 medical students and 1 of the co-authors (JHN) between 2015 and 2019. JHN had previous experience with qualitative interviewing; the medical students had no such previous experience and were supervised by JHN. Adapted interview guides included ­semi-structured questions on experiences related to patients’ declining conventional treatment and considerations of CAM use and the pertinent patient-physician dialogue. An audit trail was kept throughout data collection and analysis; eg, memos were written after the interviews in the case of additional information and/or reflections, and regular notes were kept from analysis meetings.

Data Analysis

Framework analysis^27-29 with 7 analytical steps²⁷ was used to analyze differences and similarities in patients’ and physicians’ experiences (Fig. 1, numbers in brackets in this paragraph refer to steps 1-7). Interviews were recorded and transcribed verbatim. All participants were given pseudonyms and labeled as patients or physicians (1). Next, all transcripts were read, memos were written, and impressions were discussed, particularly compelling or clear descriptions that stood out from the rest (2). KW and JHN then coded 4 interviews (2 patients and 2 physicians each) using NVivo11,³⁰ discussed and revised the initial coding (3). A preliminary analytical framework was formed by grouping conceptually related codes into categories (4). Similarities and differences between the perspectives of patients and physicians were continuously discussed in the team in order not to get stuck in dichotomies. This preliminary framework was applied to all interviews in an iterative process where the framework was discussed and revised as needed (5). Data were then charted into a matrix using Microsoft Excel.³¹ For each code, the most central quotations for each participant were selected and marked, striving for a minimum of one citation per participant and code (6). Finally, the matrix was used as a guide for data interpretation and discussion in the entire research group, making connections among participants, codes, and categories with guidance from the research questions and the newly generated concepts. The results were presented as data interpretations, illustrated with key quotations from participants (7).

Figure 1.

Seven analytical steps in framework analysis.

The study was approved by the Regional Ethics Board in Stockholm (Dnr 2015/116-31/5).

Results

Seven patients were interviewed for 32-87 (mean 61) min and 10 physicians for 20-51 (mean 32) min. Two patients chose to be interviewed at home, while 5 chose a meeting room at the Regional Cancer Center Stockholm Gotland. All physicians chose to be interviewed at their workplaces. An overview of patients’ declined and accepted conventional cancer treatment are shown in Table 2, and reported CAM modalities are listed in Table 3. For all patients, at least 1 year had passed since both diagnosis and treatment decline (Table 3). No patient expressed regret for their decision to decline (parts of) conventional treatment. An overview of categories and codes is shown in Table 4

Table 2.

Declined and accepted conventional cancer treatment among the 7 patients. Time since diagnosis and treatment decline in years. To avoid identification of participants, patient identification numbers are different from those presented in Table 3.

	Patient (n = 7)	1	2	3	4	5	6	7
Declined conventional cancer treatment	Radiotherapy		X			X	X
	Chemotherapy		X	X		X	X	X
	Hormone therapy	X			X	X
	Other treatment	X						X
Accepted conventional cancer treatment	Surgery	X			X	X
	Radiotherapy		X		X			X
	Chemotherapy		X					X
	Hormone therapy							X
	Other treatment		X					X
Time since diagnosis in years		1	6	16	4	3	10	7
Time since treatment decline in years		1	5	≥11	4	3	10	7

¹Unsure if chemotherapy had been recommended earlier; patient never accepted any chemotherapy.

Table 3.

Reported CAM modalities among the 7 patients (categorized according to National Center for Complementary and Integrative Health). To avoid identification of participants, patient identification numbers are different from those presented in Table 2.

Patient (n = 7)	1	2	3	4	5	6	7
Natural products
Vitamins and minerals	X	X	X		X	X	X
Dietary supplements1				X
Injections with mistletoe extract	X				X
Herbal products	X	X	X		X
Homeopathy						X
Mind-body approaches
Meditation				X	X	X
Personal development				X		X
Stress management					X	X
Yoga		X		X
Acupuncture			X	X
Physical exercise							X
Qi gong		X
Therapy sessions		X
Other approaches
Changes in diet	X	X		X	X	X	X
Hyperthermia		X			X
Kinesiology		X	X	X
Bioresonance			X
Anthroposophic medicine					X
Germanic medicine						X
De-toxification therapies2	X	X
Candida treatment3		X
Oxygen treatment3		X

¹Dietary supplement was either reported in general terms or as products with constituents other than vitamins, minerals, or herbals (eg, omega-3 oils or probiotics).

²De-toxification treatments involving elimination of toxins from bowels, liver, or teeth.

³Further specification of what these treatments entailed is missing

Table 4.

Categories and codes.

Categories	Codes
Divergent perspectives on treatment choices	Whish for treatment and care addressing illness and health
	Consequences of treatment choices and costs
	Diverging views on treatment choices
	Experiences of CAM and conventional treatment
Roles and power struggles in the patient-physician relationship	Roles in treatment decisions
	Power struggles and pushes toward extreme positions
Paving the way for improved communication in difficult treatment choices	Transparency and interest
	Respect and support

We present our results in the different sections by starting with similarities in data from both patients and physicians followed by identified differences.

Divergent Perspectives on Treatment Choices

Treatment and Care Addressing Illness and Health

All participants expressed the importance of treatments (conventional and CAM) both to combat their cancer and to strengthen their health. Several patients emphasized their desire to take an active stance on their illness and treatment. For some, this included using lifestyle changes and/or CAM and addressing psychological and social aspects of cancer, eg, the role of resolving grief, fear, and conflicts. All patients expressed appreciation for the holistic aspects of care and criticized conventional cancer care for lacking a holistic perspective. Some of the physicians also recognized patients’ desire for more holistic care:

“They [patients] mention that they are more holistic in their… They believe in something other than just mutations, other things that improve their health…” (Male, 30-39, physician)

All physicians described being generally positive toward patients’ treatment choices involving the use of mind-body practices. Some considered use of multivitamin/mineral supplements uncontroversial; others dissuaded patients from taking supplements during chemotherapy.

Consequences of Treatment Choices and Costs

Most patients and physicians spoke about the consequences and potential and actual costs involved in declining recommended oncological treatment and using CAM.

Among patients, the consequences of a treatment choice were often viewed in relation to their present state of health. For example, a man offered curative radiotherapy for prostate cancer weighed his current excellent health against the potential side effects and uncertain outcomes of the proposed treatment:

“I have no symptoms. Do you seriously mean that I should mutilate myself? Just because you say so? When I don’t have any symptoms, I have a good love life, no trouble peeing, and so on./…/ And besides, you can’t say whether or not it will cure me. ‘I have to say,’ I told him, ‘that’s a really bad offer.’ ” (Male, 70-79, patient)

Several physicians, however, reasoned about the consequences of treatment decline in strictly medical terms: premature death, poorer quality of life, unnecessary suffering, or greater risk of relapse. Some voiced concerns that patients who traveled abroad to access CAM risked losing precious time with family or receiving low-quality healthcare. However, several physicians also expressed equipoise, saying one could never be sure what would be best for an individual patient, especially in palliative situations.

In terms of costs, all participants mentioned economic aspects. Most patients rather neutrally noted that CAM in general is expensive. Some said the cost led them to stop the treatment, while one patient called it an investment in health. In contrast, many of the physicians spoke about unwarranted costs for ineffective therapies, and the immorality of some CAM practitioners making false promises and putting a financial burden on patients. Some physicians, however, also stressed the importance of the patients’ hope, and that CAM use often supported hope.

Most patients also described investing time in learning about cancer, conventional treatment, and CAM. For some this involved reading scientific literature, while others participated in courses. With a couple of exceptions, most physicians in this sample acknowledged knowing very little about CAM. A few described this as a problem while most did not. Most patients in this sample explicitly called for increased knowledge about CAM among physicians, and some criticized physicians harshly for their lack of knowledge.

Experiences of CAM and Conventional Treatment

All participants shared both positive and negative experiences related to both CAM and conventional cancer care.

In relation to the choice to decline conventional treatment, several patients emphasized positive experiences of CAM and negative experiences of conventional healthcare. Patients’ positive experiences spanned over a continuum of ­well-being including vitality and a sense of meaningfulness, symptom relief, reduced pain, better sleep, and fewer side effects from conventional treatment. A few patients also mentioned improved outcomes in terms of longer survival than their doctors had told them to expect. One woman who was using multiple CAM products compared perceived positive outcomes of feeling good and strong, having less stomachache, and fewer side-effects to situations when she had not used CAM and experienced more symptoms:

“I’m feeling so much better from this, and if I don’t do all these things [CAM], all those I mentioned, then this medication absolutely do not work, my stomach gets hypersensitive and I have side-effects. But when I do everything right, then I feel really good and really strong.” (Woman, 30-39, patient)

Several physicians acknowledged that some of their patients perceived benefits from CAM use and a few mentioned trajectories that were surprisingly positive in relation to the expected course of the disease. However, most physicians focused their discussions about CAM on negative experiences and adverse consequences, such as lack of effect, side effects, or possible interactions with conventional cancer treatment.

Concerning the choice to decline conventional treatment, many patients referred to previous negative experiences of conventional therapies, such as side effects and troublesome experiences with healthcare professionals. Notably, only one physician reflected on the aspect of patients’ previous negative experiences of conventional care presenting a possible reason to decline conventional treatment. Rather, most physicians discussed patients’ motives for treatment decline as being related to a general lack of confidence in conventional healthcare.

Diverging Views on Treatment Choices

A majority of both patients and physicians expressed feeling frustration about certain diverging views on treatment choices. Most patients in this sample criticized physicians for being narrow-minded. They implied that physicians lacked curiosity about individual experiences; some attributed this to physicians’ lack of knowledge about CAM, while others attributed it to the focus on purely biological explanations for cancer within conventional cancer care. Some physicians mentioned feeling frustrated by patients’ explicit projections of them being narrow-minded or servants of the pharmaceutical industry. Some physicians expressed being reluctant to comply with what they sometimes perceived as orders from patients wanting to monitor the results of CAM treatments through unconventional lab tests and x-ray examinations. A few physicians said they found discussions about different treatment choices interesting and stimulating, albeit time-consuming.

While both patients and physicians emphasized the need for research on CAM, some patients questioned the research process and expressed concerns about the economic and structural disadvantages facing the evaluation of CAM, compared with research on conventional cancer treatments. Several patients had the impression that a potent pharmaceutical industry lobbied for its drugs and neglected CAM approaches. One woman specifically linked her decision to decline conventional treatment with her perception of a biased pharmaceutical industry with the primary goal of making money:

“… to get back to why I made that decision [to decline conventional treatment]... the more I read that wasn’t research reports from the pharmaceutical industry, which were biased, but all the other kinds of reports without financial interests but rather seeking the truth, yeah, then I understood that okay, there’s a lot of power and money governing the cancer industry…” (Woman, 50-59, patient)

Roles and Power Struggles in the Patient-Physician Relationship

Roles in Treatment Decisions

Although most participating patients and physicians expressed that the final treatment decision falls to the patient, many pointed to difficulties when patients consider declining treatment; when CAM was considered as an alternative, this was even more problematic. For example, some patients described discussions about such decisions with their physician as deeply disturbing: they felt disempowered, with diminishing control of their lives and worth as human beings. While some patients initially expected physicians to be their consultants, some described forsaking this expectation and losing respect during treatment decision-making. One patient who had chosen to decline parts of the recommended conventional treatments and used CAM instead expressed frustration about some physicians’ comments on her treatment choice:

“Then I was completely drained, feeling awful and I remember one physician came into my room, he’d never met me before, he didn’t know that much, he’d only read what I had done [CAM] and his first reaction was: ‘You should know, that stuff you’re doing, there’s no statistics showing that it helps, it’s useless.” And there I lay, totally powerless and he doesn’t know what thoughts I have about it.” (Woman, 30-39, patient)

The quote above also illustrates some patients’ expressed vulnerability, loneliness, and dependency on physicians’ expertise. In parallel, some patients emphasized that using CAM required great courage due to the risk of feeling rejected or blamed by conventional care staff. Some physicians described patients’ vulnerability in general terms, while others expressed this more specifically as connected to CAM use, eg, that patients may feel ashamed or even blamed by CAM therapists for not successfully completing a CAM regimen in case of lack of effect.

Most of the physicians mentioned the difficulty of imparting knowledge about the natural course of untreated cancer and its consequences in terms of suffering and a shortened life. Some also expressed an understanding of how difficult it could be for patients to grasp at the time of diagnosis when they experienced no or few symptoms.

Some physicians acknowledged the risk of being too pushy but emphasized their responsibility to make sure that patients understand the full implications of their choice.

“… clearly you have to respect: people make their choices. You just want them to understand, have understood: It’s your choice. I can’t view it in any other way. You choose a life this short (showing a short distance with her hands) or you could choose this (hands farther apart). Is that really what you want?” (Woman, 50-59, physician)

Power Struggles and Pushes Toward Extreme Positions

Several patients described their encounter with physicians in terms of feeling verbally and non-verbally threatened with consequences unless they pursued cancer treatment. Several felt that physicians abused their power by not respecting patients’ values. Some patients even described these situations as causing extreme distress, diminishing their respect for both the individual professional and the healthcare system, resulting in decisions to decline conventional cancer treatment. One man who was inclined toward curative radiation therapy for prostate cancer described how a disrespectful attitude from the physician/healthcare system pushed him to choose to decline conventional treatment:

“They would have needed a completely different approach, to get me to… even just telling me ‘Of course you can think it over,’ and so on, meeting me halfway, but when I felt them being so darn assertive, something grew inside of me, and I thought goddammit I’ll do the exact opposite.” (Male, 70-79 patient)

Some physicians described similar situations as extremely challenging in terms of finding a balance between the need to be clear about their treatment recommendation while also having a duty to support a patient and to accept his/her treatment decisions even when this collides with their own recommendations. Such experienced difficulty is reflected in a quote by one physician:

“It was not, it wasn’t that good. I can’t feel satisfied with myself. But I don’t really know what I would have done either. I have thought about it so much that I almost get a lump in my throat when I think about it. It was difficult. Because I wanted to support her, I saw that she felt very bad….” (Woman, 50-59, physician)

Physicians described that they became defensive when they felt that their expertise was being questioned. One physician described this as adopting an uncomfortable role, a role perceived as too focused and defensive about the recommended treatment and thus, with less focus on supporting the patient. Thus, some situations seem to have triggered power struggles where both patients and physicians may have taken more extreme positions than they initially desired.

Paving the Way for Improved Communication in Difficult Treatment Decisions

Transparency and Interest

Even though several patients described negative reactions from healthcare staff when sharing their experiences around CAM, most wished to discuss CAM with their cancer care professionals. Some emphasized that genuine respect for the patient’s experiences was a prerequisite for wanting to share those experiences. Some patients also expressed that it was important to them that their CAM experiences were correctly reported in the medical records.

Despite awareness of patients’ frequent negative experiences of discussing CAM with healthcare professionals, several physicians stressed the need to show interest in this use. They also emphasized the importance of patients’ transparency regarding the use of CAM both for the sake of mutual trust and to safeguard against interactions and side effects.

“And I absolutely don’t get angry if someone uses cannabis for… if it helps them. But I do get angry if they don’t tell me so I don’t understand the symptoms or the side-effects. No, that didn’t turn out well. Yeah, that’s one of the patients I remember where it didn’t turn out well. We had a little falling-out./…/ I felt that he hadn’t been entirely upfront with me.” (Woman, 40-49, physician)

Importantly, however, some physicians mentioned avoiding asking patients about CAM because they lacked knowledge in the field.

Respect and Support

Several patients explained what kind of dialogue they would wish to have with their physicians when discussing treatment options. This included a respectful relationship with sufficient time and where they felt listened to. Their desire for support from healthcare professionals when making choices indicated a preference for shared decision-making. Some patients shared experiences of receiving such support from cancer nurses, CAM, and integrative medicine practitioners. Some physicians wished for better professional support, and an ability to offer patients a wider team of healthcare professionals with competency in CAM.

Discussion

This study highlights patients’ and physicians’ perspectives when patients decline conventional cancer treatment and consider CAM use. The results indicate tensions in the patient-physician relationship where both parties risk adopting more extreme positions than initially intended. Rather than reinforcing dichotomized attitudes of mistrust toward conventional cancer treatment and beliefs in alternative treatments, the results from this study point to a need for communication that embraces the complexity of these situations including patients’ values and previous experiences.

Interestingly the results of this study, focusing on a small percentage of patients choosing CAM as an alternative, reiterates much of the reports from previous research exploring motives for CAM use as a complement to conventional cancer care. For example, patients’ preference for care strategies encompassing both illness and health as seen in this study echoes previous research pointing to patients’ attraction to CAM and criticism of conventional treatment.^17-20,32 As in previous studies on CAM use, patients in this study desired personal control of their treatment and health.¹⁰ This is in line with current trends in healthcare including cancer care encouraging patients to be informed and active,^33,34 and has been shown to related to better clinical outcomes including survival.^35-39 In contrast to patients’ desire to be active in treatment choices, our results suggest that patients did not feel respected when declining oncological treatment and using CAM, also previously shown.²²

In line with previous research, this study highlights a dissonance between patients’ wish to discuss CAM^1,4,40 with cancer care professionals, and professionals’ lack of knowledge about CAM.^5,6,8,41 Many cancer patients do not disclose their CAM use to cancer care professionals,^3,4 often due to an assumed lack of knowledge about CAM.^3,40 Some physicians in this study acknowledged such gaps, while others felt no need for more knowledge.

Although disparate perspectives and assumed lack of knowledge play into the conflicts highlighted in this study, the results also indicate inadequate communication and power struggles between patient and physician as decisive factors. This is comprehensible, given reports of substantial discordance between patients and oncologists’ regarding prognosis,⁴² patients’ preference for shared decision-making,⁴³ and the generally acknowledged need for improved ­patient-physician communication about life-threatening illness.^44-48 Our results show the importance of acknowledging multiple perspectives to improve these communications. This is confirmed by a scoping review³³ concluding that patient participation requires healthcare professionals to shift from “doing to” to “working with” patients, which includes sharing information, knowledge, and power. While patients declining conventional treatment and using CAM clearly presented a severe challenge to many physicians in this study, treatment discussions may become easier if physicians can accept patients’ reasons as value-driven rather than driven by goals.²²

Research indicates a great need for information and support functions to help both patients and professionals make well-informed decisions.⁵ Our results suggest that patients and cancer care professionals sometimes need support that goes beyond mere information about CAM treatments. When polarization might compromise the therapeutic relationship,¹ one-on-one decision-making coaching⁴⁹ may be the most appropriate. Such support must balance evidence-based information with an empathic discussion that respects individual patients’ needs, preferences, and values.^50,51 Based on our findings, we suggest implementing general recommendations for how cancer care professionals should address their patients’ CAM use and basic education on CAM as a starting point to be prepared for even more challenging situations.^2,5

While the conflicts highlighted in this study are relatively rare, resolving them is likely to become more urgent as attitudes toward conventional cancer treatment among the general population may change. A US survey on cancer opinions showed that 39% of people believe that cancer can be cured through alternative practices alone.⁵² Widespread use of and belief in alternative treatment has prompted medical professionals to replace the term CAM with CIM—complementary and integrative medicine—thus demarcating the use of these treatments as alternatives as a distinct phenomenon.^53,54 The concept of CIM also highlights complementary treatment strategies’ compatibility with conventional care principles and paradigms, including evidence-informed treatment recommendations.⁵⁵ This is also in line with the definition of evidence-based medicine requiring “integration of the best research evidence with clinical expertise and patients´ unique values and circumstances.“ ⁵⁶

Methodological Considerations

Given limitations in the selection and inclusion of study participants, our findings are unlikely to cover all possible experiences related to patients’ declining conventional treatment and using CAM. Especially, data saturation is clearly questionable given the small number of participating patients. Moreover, CAM use may have changed over time since our data collection. Nevertheless, there are striking similarities between our results and previous results^{17-22,24,32,40,57} and we argue that our findings raise important new questions and perspectives for today’s cancer care around these sparingly researched situations.

The transparent, systematic, framework analysis approach was found particularly appropriate given our multidisciplinary research team combining experience in qualitative methods and various professional backgrounds including oncology, palliative care, oncology nursing, and pharmacy.²⁷

Conclusion

The results of this study highlighting both patients’ and physicians’ experiences of situations when patients decline conventional cancer treatment and consider CAM, exemplify the difficulty of shared decision-making in practice. To achieve shared decision-making in these clinically challenging situations when patients’ and physicians’ views on the best treatment option deviates the results here point to a need for the embracement of the complexity of these situations bringing attention to patients’ values rather than reinforcing dichotomized attitudes of mistrust toward conventional cancer treatment and beliefs in alternative treatments. For this, improved knowledge among physicians about patients’ values as well as about CAM is imperative.

Funding

This project was funded by the Regional Cancer Centre, Stockholm-Gotland, Sweden (Grant 2015).

Conflict of Interest

The authors indicated no financial relationships.

Author Contributions

Conception/design: K.W., L.S., J.H.N. Provision of study material or patients: K.W., J.H.N. Collection and/or assembly of data: K.W., J.H.N. Data analysis and interpretation: K.W., J.H.N. Manuscript writing: K.W., L.S., P.F., J.H.N. Final approval of manuscript: All authors.

Data Availability

The data underlying this article cannot be shared publicly due to few study participants and rare conditions (treatment decline). The data will be shared on reasonable request to the corresponding author.