Table 4 Description of each patient value that was discussed in the pre-intervention and post-intervention phase

Hope

In both study phases, patients regularly expressed to hope for personal benefit by participating in an early phase clinical trial. Some patients thereby called an early phase clinical trial their “last straw” (subject 10, pre-intervention) or “nothing ventured, nothing gained” (subject 03, pre-intervention), whereas others directly mentioned the hope to personally benefit. Often, these expressions were paired with a concession or nuance: they hope to benefit from trial participation, but if not, then at least they will have tried. This thereby seemed to relate to perseverance, which will be described in more detail below. Hope for personal benefit also seemed to relate to quality or quantity of life: patients hope the treatment prolongs their life and/or makes the physical condition better. Some patients stated that they hope for a possibility for experimental treatment, or that they want to keep hope, but they do not always mention what exactly they are hoping for. Patients did not explicitly say that they have an optimistic attitude, but in some cases their expressions seemed to indicate that they have a positive outlook on life, for instance: “as long as […] the sun shines, you have to make the most of every day” (subject 19, post-intervention). One patient had hoped for more (i.e. better results from early phase clinical trials) than what was offered during the consultation

Perseverance

With regards to perseverance, patients did not (literally) mention that they want to have tried ‘everything’ or to keep fighting. Occasionally, patients mentioned that they do not want to give up or that they are “not a quitter” (subject 04, pre-intervention). Instead, in both study phases, several patients appeared to consider it important to ‘stay busy’ by participating in an early phase clinical trial instead of ‘doing nothing’. This sometimes seemed to relate to their hope for benefit from an early phase clinical trial (‘nothing ventured is nothing gained’). Generally, it seemed that these patients do not want to have the feeling that they could have done something, but did not try it

Quality or quantity of life

The chance that participation in an early phase clinical trial offers a chance or prolongation of life, was a relevant consideration for many patients in both the pre-intervention and the post-intervention phase. Patients sometimes elaborated on this by stating their goals in life (e.g. wanting to become a grandparent). Other patients stated that they wanted to live longer, but not at the expense of their quality of life or “if [they] would become more ill” (subject 02, pre-intervention), because that would be “a waste of [the extra] time” (subject 18, post-intervention). Some patients explicitly asked about their life expectancy, others stated that they do not want to know how long they have left to live. Generally, if patients mentioned ‘quality of life’ they referred to their physical condition and complaints, but it often remained unclear what a ‘high-quality’ life would look like to them. Some patients mentioned what they “try to do the things [they] want to do” (subject 06, pre-intervention) in terms of e.g. hobbies, tasks and events: “I’ve always been able to work, I like that. I want to continue doing so” (subject 10, pre-intervention). Some patients currently experienced a good quality of life, whereas this applied less to others (e.g. due to side effects from previous treatment). A few patients said they experienced psychological issues or had sought psychological support

Risk tolerance

Many patients acknowledged the uncertainty of (potential benefits from) participation in early phase clinical trials, because “you never know beforehand what you’re getting yourself into” (subject 04, pre-intervention). Some patients explicitly stated that they are willing to accept the risks of experimental treatments, while others mentioned that they are scared (e.g. of potential side-effects or ‘scary procedures’ such as biopsies) or that they are still debating whether the risk is worth it for them. It appeared as though other values can help patients in tolerating risks. For instance, “On the one hand, you can be excited to start trying that [trial participation]. If you don’t try it, you’ll have nothing anyway. But on the other hand, I also think, what will be done to you?” (relative of subject 02, pre-intervention). In that sense, the patients who were willing to tolerate risks and uncertainty seemed to be the ones who strongly value hope, perseverance and/or quantity of life. Furthermore, some patients mentioned that they trust the healthcare system or professional to adequately deal with these risks. Patients occasionally indicated their concerns for potential side-effects by repeatedly asking questions about those. The desire for regular or close follow-up in relation to participating in an early-phase clinical trial was rarely mentioned by patients

Trust in the healthcare system or healthcare professional

In both the pre-intervention and the post-intervention, some patients spontaneously acknowledged their belief that the healthcare professional or system will not willingly harm them, or will help them if something goes wrong (e.g. if they experience side effects from the early phase clinical trial). As explained above, trust thereby seemed to help patients in tolerating risks. For instance, a patient used trust as a means to control her fear for biopsies: “So yes, then I will take the fact that I think such a biopsy is super scary for granted, but I’m just happy and trust your colleagues who are going to perform that” (subject 11, pre-intervention). Sometimes, patients asked the oncologists for their advice what to do with regards to the decision whether or not to participate in early phase clinical trials, or to other decisions (e.g. whether or not to use certain pain medication, or to get vaccinated against COVID-19). Others referred to different healthcare professionals with whom they have a good (or bad) relationship and who could help them in this decision (e.g. their referring oncologist or general practitioner). In the post-intervention, some patients mentioned that they appreciated the rationale behind a specific trial or that they believed it to be a step in the right direction

Autonomy

In both study phases, autonomy was generally not something that patients explicitly mentioned to consider important, but a value that arose from their expressions and/or actions. Several patients spontaneously indicated that they want to let everything sink in and think about the decision. Sometimes they (also) asked what action they have to take themselves once they have made a decision. A few patients referred to information they actively sought for, or to situations where they took matters in their own hands (e.g. to start directly with hormonal tablets after a surgery instead of waiting as the doctor suggested, or to have actively sought to be referred for early phase clinical trials). Patients sometimes discussed situations that illustrate that they are still independent. Occasionally, patients seemed to have made an (autonomous) decision before the consultation, or they indicated their decision during the consultation in response to the doctor, both to participate (“Yes, I’m definitely in favour [of participation]. Yes, yes, I’ll just go for it”, subject 08, pre-intervention) and not to participate (“Well, hearing this from you, I won’t do it [participate]”, subject 31, post-intervention). No patients mentioned that they gained a sense of control by participating, but sometimes they mentioned that they could decide for themselves if they wanted to stop at any time

Social adherence

When a patient made a remark regarding social adherence, they mostly stated that they find it important to discuss the information and deliberation of the options with their partner/children/other family and friends. Sometimes they mentioned the burden of the early phase clinical trial on the relative, for instance because “[they] are the one who has to drive” (subject 26, post-intervention). One patient mentioned that her husband is also ill, and that she wants to take care of him. Another patient stated that he wants to take care of his wife (by moving to a smaller house) so she can keep living there when he is gone. Relatives that were present during the consultation sometimes gave their opinion about what option they think is best for the patient. However, no patient mentioned to feel pressured by others with regards to his/her decision

Altruism

Patients in the pre-intervention and post-intervention occasionally referred to altruism. If they did so, it was usually by stating that they want to help future other patients, or help develop future treatments by participating in an early phase clinical trial. In some of these cases, they mentioned that they hope for some benefit for themselves, but if they do not, “then let it help science” (subject 22, post-intervention). A patient and relative in the post-intervention justified this belief a bit further by stating he has a relatively unknown tumour type and that “without research, they [healthcare professionals] can never continue [new treatments]” (subject 18, post-intervention)

Corporeality

When asked about their complaints, some patients emphasized the contrast between how ‘good’ they feel and the bad news they recently received (i.e. that there are no standard treatment options available anymore): “I am completely healthy […] apart from having cancer” (subject 28, post-intervention). When patients did feel ill, they sometimes expressed their discontent with the way pain and other tumour-related symptoms affect their daily life. Many patients worried that the cancer will grow and that their condition will deteriorate, especially if ‘nothing’ is done – which seemed to relate to perseverance. Besides, (sometimes the very same) patients expressed that they have had relatively good experiences with previous treatments (e.g. little side effects, appropriate blood levels), with which they seemed to suggest that this will also apply (i.e. that their body will hold up) if they participate in an early phase clinical trial – which seemed to relate to risk tolerance. Some patients express their wish to maintain a healthy lifestyle, for example “And I eat healthy and, since I heard in 2017 [that I have cancer], I haven’t drunk any alcohol” (subject 14, pre-intervention), either because they want to reduce their symptoms or because they hope it will improve their quality/quantity of life. In contrast, other patients described how they care less about maintaining a healthy lifestyle: “I began exercising before last year when it became clear that it [cancer] had returned. Yes well, then I let go of all exercises, I thought, get lost, I’m done with it” (subject 11, pre-intervention). Some patients, however, stated that they are willing to change these habits if it is required for participation in early phase clinical trials

Accepting one’s fate

Patients often stated that they “know that [they’re] going to start the last phase of [their] life” (subject 18, post-intervention). Some patients also mentioned that they accept this fate, while others simply stated that they are aware of the situation, implicitly suggesting some level of acceptance. In contrast, other patients and relatives said that they have a hard time accepting this fate: “can’t accept it for now, because there are still so many things” (relative of subject 03, pre-intervention). Religious and spiritual faith (in general and as a potential means to accept one’s fate) were not mentioned by patients in this study

Humanity

Patients rarely explained that they want to be treated as a human-being (rather than e.g. a patient, number or guinea pig). In the pre-intervention phase, a patient mentioned that others “are all so compassionate and all” (subject 03, pre-intervention) and send lots of messages. Another patient said that his “youngest daughter did not really ask about it [his situation]. And that is okay” (subject 13, pre-intervention). A third patient explicitly mentioned that “[he does] not feel like being turned inside out again” (subject 02, pre-intervention) in order to participate in an early phase clinical trial. Although it is difficult to determine the underlying value in these previous examples, the fact that they brought such matters up seems to indicate that these patients value humanity. Also in the post-intervention, one relative indicated concern for the patient becoming a “guinea pig” (subject 29, post-intervention). Another patient told the oncologist that “it is alright” (subject 29, post-intervention) if he is treated as a number (instead of a name) during teleconferences regarding an early phase clinical trial