Introduction
Palliative chemotherapy aims at prevention and relief of disease symptoms. The impact of treatment on length of life is often modest or uncertain, and the occurrence of adverse events can negatively impact quality of life. Therefore, the decision whether to start palliative chemotherapy involves a personal trade-off between the potential benefits and risks of treatment [
1]. When informing patients about this treatment option, information provision needs to be balanced in order to meet informed consent, while not providing any unwanted information [
2].
In daily clinical practice, achieving this balance may be difficult. Findings from surveys suggest that many patients in the palliative treatment setting wish to receive detailed treatment-related information [
3,
4]. Little is known about the ability of physicians to judge patients’ information desire. One study in the palliative setting showed that physicians had difficulty predicting patients’ stated preferences for information on expected survival [
5]. Likewise, studies on treatment decision-making showed poor concordance between patients’ preferences and physicians’ perceptions of these preferences [
5‐
9]. Reference has been made to the “silent misdiagnosis” of patients’ treatment preferences [
10].
The present study focused on the treatment decision whether or not to start second-line palliative chemotherapy. Beyond first-line treatment for advanced disease, benefits of subsequent lines of chemotherapy are reduced and also often less clear, emphasizing the preference-sensitive nature of this decision. Furthermore, the study focused on two common types of cancer, i.e., colorectal and breast cancer. Unlike previous studies using hypothetical scenarios, patients’ information desire was assessed by actually offering information about the benefits and risks of treatment options to patients, using a decision aid (DA). The aim of the study was to investigate patients’ desire for information about the benefits and risks of second-line treatment, and explore their oncologists’ awareness of this desire.
Discussion
This study sought to determine whether the high information desire as stated by patients with advanced cancer in surveys would also hold true when actually offering treatment-related information in a DA. The findings confirm that almost all patients with advanced breast or colorectal cancer wished to receive information on adverse events and tumor response rates, and that three quarters of patients wished to receive detailed survival information related to second-line treatment options.
The oncologists in this study were adequately aware of their patients’ high information desire. They were generally capable of identifying patients wanting information about adverse events and tumor response, but had more difficulty identifying patients wanting information about survival and patients not wanting the available information. These results are in line with the previously described “silent misdiagnosis” of patients’ information preferences [
5], and treatment and participation preferences [
5‐
10].
The majority of patients in this study wished to receive all available information from the DA, including detailed survival information. However, audio-recordings of consultations on first-line palliative chemotherapy have shown that 61 % of patients are not given survival information [
15]. In addition, a systematic review illustrated that communication on prognosis is characterized by lack of clarity, lack of an estimate of expected survival, and avoidance of this topic by focusing on active treatment options [
16]. Perhaps not surprisingly, studies have shown that more than two thirds of patients who had started first-line palliative chemotherapy did not seem to understand that the goal of treatment was not cure [
17], and that only 49 % of patients with advanced cancer were fully aware of their prognosis [
4]. Oncologists might be hesitant to impart survival information, possibly fearing a negative impact on the patient [
18]. Such fear, however, may not be warranted. For instance, in patients with advanced cancer, full prognostic discussion was associated with lower levels of depression and did not impact on anxiety [
19]. In the same vein, prognostic information could be provided to patients without taking away hope [
20], and end-of-life discussions did not inflict psychological distress [
21]. On the contrary, not discussing prognosis may cause distress and may preclude patients from reorganizing and adapting their lives [
22]. It was also found that patients reporting not having had end-of-life discussions received more aggressive medical care near death and later hospice referral, resulting in worse quality of life [
21].
What can be done to help clinicians to better meet patients’ desire for information? Our suggested approach for clinicians is to start discussions by eliciting the patient’s information desire by using open-ended questions [
23]. In addition, a stepped approach to giving information, as employed in this study, could help to clarify a patient’s information desire. This approach includes three steps: (1) giving the patient a preview of the type of information available, (2) asking whether the information is desired, and (3) then following the patient’s desire. This stepwise approach is consistent with recommendations on the communication of prognosis to patients with advanced disease [
23]. DAs can help to implement this approach by providing numerical estimates of benefits and risks of treatment options; previous studies showed that DAs can improve understanding [
24]. The clinician can further promote understanding by asking what the patient understands and feels about the information provided [
25].
Methodological strengths of our study are that information desire was assessed by providing treatment-related information to patients at the point of decision-making. Generalizability is facilitated by the recruitment of patients using broad inclusion criteria, before the moment of disease progression. To prevent selective patient participation, physicians were instructed to recruit consecutive patients and not to mention that detailed risk information could be provided. This study has a number of limitations. Ideally, oncologists’ judgment of their patients’ information desire would be recorded between the diagnosis of disease progression and the treatment discussion with the patient. However, recording oncologists’ judgment in this narrow window of opportunity was expected to result in a large amount of missing data. Asking oncologists for a retrospective judgment, as was done in a previous study on palliative treatment decisions [
5], would introduce the risk of recall bias. We therefore decided to record the oncologists’ judgment beforehand (median time of 5 months before the treatment discussion), knowing that most oncologists in this study had a long-standing relationship with their patients (as an indication, median time since first diagnosis of disease and diagnosis of metastatic disease were 23 and 10 months, respectively). While our findings are in line with those of previous studies, they will need to be confirmed by further studies of real-world treatment decisions. It is also worth noting that the accuracy of predicting patient’s desire for survival information may vary between doctors, but this could not be analyzed due to the small number of judgments made per doctor. In hindsight, it would have been worthwhile to also ask the patients in the control arm of the randomized trial about their information desire, without offering the information, to examine the extent to which patients’ information desire is dependent on the context in which it is assessed.
In conclusion, this study confirms that many patients with advanced cancer wish to receive detailed information on the benefits and risks of palliative treatment options. Oncologists were aware of this high information desire, but had some difficulty judging the information desire of individual patients. A stepped approach, possibly facilitated by the use of DAs, may help to better meet patients’ information needs.
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