Treatment expectations
Treatment expectations did not differ between patients aged < 70 and ≥ 70 years. However, a significant minority of patients (n = 9, 21%) and their family caregivers (n = 13, 36%) believed that palliative treatment would cure the cancer at the first cycle of chemotherapy. Previous studies have demonstrated that patients diagnosed with incurable cancer expected that palliative chemotherapy could lead to the cancer being cured [10, 29, 30]. In a US study by Temel et al., of 74 patients with NSCLC who received palliative chemotherapy or radiotherapy, 30% expected a cure [9]. This finding is similar to the younger patients in our study, of whom 28–35% expected a cure from treatment. A survey study from the US also demonstrated that younger patients aged < 57 years were significantly more likely to hope for a cure [31]. There may be many reasons why younger patients have higher expectations of palliative chemotherapy. High expectations may arise from insufficient information from physicians, as discussed by Nowicki et al. [30]; especially when the prognosis is poor, physicians may find it difficult to communicate bad news, which also could be the case in our study. Additionally, patients may misunderstand physicians when they say that the cancer is responding to the treatment [11]. Patients may believe that responding to the treatment means they are being cured of cancer. None of the patients in our study were highly educated; it is important to acknowledge that patients with thoracic cancer may generally have low health literacy, which can affect their capacity to understand basic information, such as prognostic information [32]. In patients aged ≥70 years, the proportion expecting a cure increased from 7 to 13% from first to third cycle, which may indicate that patients receiving chemotherapy achieved better symptom control.
A study group [33] developed a decision tool in a pilot study in Canada to help inform patients with lung cancer about prognosis and treatment options. The tool presented information about survival and effects on QoL, along with an explicit statement that the chemotherapy was not given with a curative intent. Despite the effort to create an optimised information tool, all patients retained unrealistic hopes of a cure or, perhaps, of a miracle [33]. This suggests that physicians may provide information but patients may not assimilate it, which could be a coping mechanism [33]. Moreover, older patients may be more likely to accept poor prognoses because they are less likely to have dependent children and will lose fewer years of their working lives [31]. However, in our study, no significant difference in expectations between younger and older patients was observed, even though treatment expectations among younger patients were high; this could be due to the small number of patients in the sample. Although we found no significant age-related differences, previous international studies suggest there may be age-related variations in treatment expectations [9, 31]. When initiating palliative treatment, it may be important to incorporate conversations about expectations, paying particular attention to potential age-related differences and differences between patient and family caregivers.
In our study, 36% of family caregivers expected a cure. One possible explanation for treatment expectations among family caregivers is the fact that the questionnaire was administered when patients were starting the first cycle of chemotherapy. Some family caregivers may not have been present at the consultation during which patients were told their cancer had progressed. Another reasonable explanation for high treatment expectations is that 81% of patients included in the study had good performance status. However, a 2019 study revealed discordance in beliefs about curability in 52% of caregiver-oncologist dyads, indicating that family caregivers often have unrealistic treatment expectations [34]. Our study also demonstrated that 42% of family caregivers expected reduced pain and discomfort at the first cycle, compared to 28% of patients. It may be difficult for a family caregiver to see a close relative who is affected by an incurable cancer suffer near the end of life. Family caregivers are often the closest source of support during cancer treatment [35], and differences in expectations between patients and caregivers may prevent them from making timely decisions about treatment and future care. Physicians and nurses must assess and, as needed, adjust patient and family caregiver expectations. It is important to note that the expectations and experiences of family caregivers during palliative chemotherapy have not been adequately examined, and further studies with more participants are needed.
Quality of life
No age-related difference was observed in the QoL and time interaction term, consistent with other studies [12, 19]. However, overall QoL decreased over time for all patients to a statistically significant but not clinically meaningful degree [25]. In subgroup analyses, physical well-being and emotional well-being declined significantly among all patients. Wintner et al. [12] found similar results for QoL during different treatment lines in patients aged < 70 and ≥ 70 years with NSCLC and SCLC, as measured with the European Organisation for Research and Treatment of Cancer Quality-of-life Questionnaire Core 30. The same study also documented a decline in the physical functioning QoL domain among younger patients [12]. Although, unlike Wintner et al., we found no significant difference between age groups in physical well-being, we observed a clinically meaningful but not statistically significant decline in the physical well-being domain among younger patients, whose baseline performance status was better than that of older ones. Wintner et al. also found decreased physical functioning among patients aged ≥70 years in third or later lines of treatment [12]. We were unable to replicate this finding due to the relatively small number of patients in the older age group receiving third-line or later palliative chemotherapy.
It may be difficult to assess the relative influence on QoL of palliative treatment or other factors like comorbidity and high symptom burden. The challenge is to identify patients who truly benefit from palliative chemotherapy and find the right time to discontinue it. Routine assessment of QoL and expectations at baseline and during palliative chemotherapy may increase awareness among physicians and nurses of patients’ and family caregivers’ perspectives on treatment and understanding of disease. QoL assessment provides important information about symptoms arising from treatment and insight into other aspects of physical, emotional, social/family, and functional well-being. Using QoL assessment systematically during palliative treatment may provide guidance about the timing of conversations about treatment decisions.
Strengths and limitations
This study has several limitations that deserve mention. Relatively few patients and family caregivers were included despite an 11-month inclusion period. The inclusion process was very time-consuming because many patients’ chemotherapy was postponed due to admissions, side effects, or other cancer-related problems. The second and third cycles of palliative chemotherapy were postponed for 13 and 8 patients, respectively. In addition, six patients died during the study period. This demonstrates the complexity of collecting data in a real-life palliative care setting. Another limitation is the interval of 3 weeks between QoL questionnaires, which may account for the lack of significant between-group findings. Nevertheless, among patients receiving palliative chemotherapy with a poor prognosis, assessment of QoL over shorter time intervals is likely necessary. Despite these challenges, the participant completion rate was an acceptable 83%. Kristensen and colleagues had an equivalent completion rate in a longitudinal study among patients affected by lung cancer receiving chemotherapy [13].
An additional limitation is that no validated tool exists with which to assess treatment expectations among patients with advanced cancer. Our single item addressing expectations was developed from earlier studies [9, 10] and pilot tested with cognitive interviews before use [21]. Furthermore, the exploratory nature of our study was intended to provide insight into the intersection of age, expectations, and QoL. Future studies should include larger patient cohorts to provide statistically rigorous information about when to discuss withdrawal from chemotherapy with patients. Future in-depth studies should investigate collaboration between patients, caregivers, and professionals about treatment decisions and its relationship to treatment expectations and end-of-life discussions. Furthermore, it may be beneficial to adjust patients’ and family caregivers’ expectations and initiate shared decision making in end-of-life treatment.
Following a representative sample of patients with thoracic cancer closely over time, we have new insight into the expectations of Danish patients with thoracic cancer and their family caregivers and QoL during palliative chemotherapy.