In cancer care, physicians often have to give bad news to patients and caregivers, such as when cancer treatment has failed and cessation of active cancer treatment is advisable. Optimal communication between patients, caregivers, and physicians has been addressed as a core component of cancer care (Steinhauser et al., Reference Steinhauser, Christakis and Clipp2000). Even for patients with newly diagnosed advanced cancer, early integration of palliative care has been shown to improve the quality of life (Temel et al., Reference Temel, Greer and El-Jawahri2017). The American Society of Clinical Oncology clinical practice guidelines recommend that inpatients and outpatients with advanced cancer should receive dedicated palliative care services early in the disease course, concurrent with active treatment (Ferrell et al., Reference Ferrell, Temel and Temin2017). However, both patients and physicians find discussions about prognosis and end-of-life issues to be challenging (Kaplan et al., Reference Kaplan, Greenfield and Gandek1996). Our previous interview study at an outpatient clinic found that, when receiving bad news, patients preferred physicians to give them opportunities to ask questions and wanted to be told about frequently asked questions from other patients in advance (Fujimori et al., Reference Fujimori, Akechi and Akizuki2005).
Butow et al. developed a question prompt list (QPL) containing frequently asked questions from cancer patients (Butow et al., Reference Butow, Dunn and Tattersall1994). Patients refer to the QPL beforehand and then ask the physician questions at the consultation. In subsequent work, various types of QPLs have been developed and reported to be useful and effective in increasing patients’ question-asking behaviors (Bruera et al., Reference Bruera, Sweeney and Willey2003; Clayton et al., Reference Clayton, Butow and Tattersall2003). We also conducted a randomized controlled trial and reported the usefulness of a QPL for patients with advanced cancer when making an initial treatment decision (Shirai et al., Reference Shirai, Fujimori and Ogawa2012). In systematic reviews, QPLs have been shown to have a significant effect on facilitating discussions on specific topics, such as prognosis (Brandes et al., Reference Brandes, Linn and Butow2015; Sansoni et al., Reference Sansoni, Grootemaat and Duncan2015). Brandes et al. (Reference Brandes, Butow and Tattersall2014) suggested that consultations in the setting of advanced cancer could be tailored to the specific information needs of patients and caregivers. Rodenbach et al. (Reference Rodenbach, Brandes and Fiscella2017) suggested that a combined QPL and coaching intervention was effective in helping patients and caregivers discuss topics of concern, including prognosis.
Cessation of cancer treatment and end-of-life issues mark a major turning point and necessitate communication that is difficult for both patients and physicians because of the complex decision-making required (Buckman, Reference Buckman1984). Previous studies showed that patients with advanced cancer, who need to discuss anticancer treatment cessation and transition to palliative care, preferred to have end-of-life discussions (Clayton et al., Reference Clayton, Butow and Tattersall2003; Walczak et al., Reference Walczak, Mazer and Butow2013; Umezawa et al., Reference Umezawa, Fujimori and Matsushima2015). Their preferences included discussing both their current condition and the future disease course. Furthermore, patients with rapidly progressing cancer, such as pancreatic cancer, were more likely to prefer that their physician carefully tell them to prepare mentally and to maintain hope in addition to providing the prognosis. It is likely that pancreatic cancer patients, family caregivers, bereaved family members, and physicians have extensive experience with end-of-life discussions after the cessation of active cancer treatment. Therefore, the aim of this study was to assess the need for a QPL that encourages end-of-life discussions between patients with advanced cancer and their physicians.
Participants and procedure
We recruited pancreatic cancer patients, family caregivers, and bereaved family members who participate in a pancreatic cancer patient support group (NPO PanCAN Japan) and physicians working in the Department of Hepatobiliary and Pancreatic Oncology at the National Cancer Center (NCC) Hospital. Written informed consent was obtained from all participants. Eligibility criteria were as follows: patients with rapidly progressing pancreatic cancer who received active cancer treatment; family caregivers who provided care to a family member with rapidly progressing cancer; bereaved family members who experienced the death of a family member with rapidly progressing cancer; and physicians who regularly treating patients with cancer. Participants were excluded if they were not able to understand Japanese or if they were too ill.
Focus group interviews (FGIs) and content analysis were performed.
This study was approved by the National Cancer Center Institutional Review Board, Japan. We conducted four FGIs and one individual interview. Each interview took about 180 min. One FGI with patients who had pancreatic cancer and two FGIs with family caregivers and bereaved family members were conducted at the office of NPO PanCAN Japan. One FGI with physicians and one individual interview with a physician were conducted at the NCC Hospital. All FGIs were conducted by a clinical psychologist with experience conducting interviews (M.F.). At the start of each interview, the interviewer (M.F.) introduced herself and explained the purpose, background, methods, and schedule of the FGI. Based on an interview guide (Supplementary material), participants were asked to discuss three themes: the question items that should be included in the QPL that encourages the end-of-life discussions with patients, family caregivers, and physicians after cessation of active cancer treatment; when the QPL should be provided; and who should provide the QPL booklet. The participants engaged in an open discussion guided by the interviewer. When necessary, the interviewer asked further questions to clarify replies. All interviews were recorded using digital voice recorders.
All recorded dialogue was transcribed, and the transcribed dialogue was independently divided into basic blocks, each of which was a single utterance that did not include multiple different meanings in the sentence. Utterances of similar content were organized and summarized into categories, and the number of utterances was counted for each. If a person mentioned the same thing multiple times, it was counted once. Not all participants commented on all the questions. Three cancer specialists (Y.S., S.U., and M.M.) independently coded the basic blocks so that the same meaning was assigned to one attribute. When opinions about the coding differed, discussions were held until consensus was reached. The attributes of coding integrity were checked throughout the coding process (Pope and Mays, Reference Pope and Mays1999; Colorafi and Evans, Reference Colorafi and Evans2016).
We recruited 21 people who participated in NPO PanCAN Japan, 10 members of NPO PanCAN Japan living in the suburbs of Tokyo, and 6 physicians who treated patients with cancer. Eighteen of these 37 agreed to participate (response rate 48.6%). The 18 participants comprised 5 patients with pancreatic cancer (including 1 who had just stopped active cancer treatment; 3 in their 50s, 1 in their 60s, and 1 in their 70s), 3 family caregivers (1 spouse and 2 daughters) of patients (2 with biliary tract cancer and 1 with pancreatic cancer), 4 bereaved family members (2 spouses, 1 son, and 1 brother) of patients (1 with biliary tract cancer and 3 with pancreatic cancer), and 6 physicians. Five patients, 1 family caregiver, 2 bereaved family members, and 1 physician were over the age of 50 years. There were 13 men (3 patients, 1 family caregiver, 3 bereaved family members, and 6 physicians) and 5 women (2 patients, 2 family caregivers, and 1 bereaved family member). Two patients had recurrence/metastasis.
Questions for the QPL
In total, 57 question items in 9 categories emerged from 150 utterances regarding question items required for the QPL. The nine categories were (1) preparing for the end of life, (2) treatment decision-making, (3) current and future quality of life, (4) current and future symptom management, (5) information on the transition to palliative care services, (6) coping with cancer, (7) caregivers’ role, (8) psychological care, and (9) continuity of cancer care. The 57 question items in these 9 categories are shown in Table 1.
When the QPL should be provided?
Five opinions on when the QPL should be provided were compiled from 14 utterances: (1) during first-line treatment, (2) during second-line treatment, (3) between first-line and second-line treatments, (4) before first-line treatment, and (5) during the transition from second-line treatment to palliative care services (Table 2).
Who should provide the QPL?
Seven opinions on who should provide the QPL were compiled from 17 utterances: (1) the physician in charge of the patient's care, (2) a nurse (certified nurse specialist), (3) medical staff who is not a physician, (4) medical staff who is not a nurse, (5) medical staff (not specified), (6) a nurse after a physician briefly explains the QPL, and (7) a psychologist (Table 3).
In this study, we conducted FGIs with patients, family caregivers, bereaved family members, and physicians and collected basic data in order to assess the need for a QPL that encourages end-of-life discussions between patients with advanced cancer and their physicians. From the results, 57 question items emerged in 9 categories related to physical and psychological symptoms, treatment and care for symptoms, preparations for the end of life, and continuity of cancer care. These results were generally consistent with those of previous studies (Walczak et al., Reference Walczak, Mazer and Butow2013; Umezawa et al., Reference Umezawa, Fujimori and Matsushima2015). Participants responded that a QPL would help patients remember the questions they wished to ask and would prompt them to consider issues of which they were previously unaware.
In this study, anxiety and concern about cancer progression and future treatment, knowledge for when treatment fails, symptom management, and life expectancy emerged as question items to be included in the QPL. Most of the utterances about end-of-life preparations were from physicians, followed by bereaved family members; only one utterance was from a patient. Patients experience high levels of anxiety and thus may be more reluctant to have end-of-life discussions than their physician and family members (El-Jawahri et al., Reference El-Jawahri, Traeger and Park2014). Death-related topics can elicit psychologically strong emotions in patients and physicians, and may be unconsciously avoided (Stiefel et al., Reference Stiefel, Nakamura and Ishitani2019). Since all of the patient study participants were pancreatic cancer patients with poor prognoses, they may have been more resistant to the topic of end-of life due to their imminent death. In contrast, previous studies have found that patients with advanced cancer prefer to have discussions with their physician about their physical and psychological status, their symptoms and symptom management, and the transition to palliative care (Clayton et al., Reference Clayton, Butow and Tattersall2003; Walczak et al., Reference Walczak, Mazer and Butow2013; Yeh et al., Reference Yeh, Cheng and Chung2014; Umezawa et al., Reference Umezawa, Fujimori and Matsushima2015; Bouleuc et al., Reference Bouleuc, Savignoni and Chevrier2021). Furthermore, our previous study found that patient preferences regarding the communication of bad news by physicians vary according to demographic and psychological variables but not according to disease variables, whereas preferences for discussing life expectancy differed according to the individual (Fujimori and Uchitomi, Reference Fujimori and Uchitomi2009; Umezawa et al., Reference Umezawa, Fujimori and Matsushima2015). The small number of patients with pancreatic cancer who participated in these studies did not allow us to conclude that there are no disease differences in patient preferences regarding the communication of bad news by physicians; however, it suggests that patients’ individual preferences need to be taken into account when engaging in end-of life discussions. Therefore, it might be necessary to consider patients’ individual preferences when engaging in end-of life discussions.
By using the QPL, healthcare providers could easily understand these individual differences.
Consistent with a previous study by Walczak et al. (Reference Walczak, Mazer and Butow2013), participants preferred end-of-life discussions that included advance care planning (ACP). The QPL for end-of-life discussions developed by Walczak et al. (Reference Walczak, Mazer and Butow2013) listed questions about ACP, preferences for future care, and helping patients and their caregivers to maintain autonomy and authority in treatment decisions once the patients have become incapacitated. In 2007, the Japanese Ministry of Health, Labour and Welfare (2007) developed guidelines for the decision-making process in end-of-life medical care to promote patient's self-determination at the end of life. And in 2018, the ministry issued revised guidelines that advocated ACP (Ministry of Health, Labour and Welfare, 2018). ACP is a process involving discussions between a patient, caregivers, and health providers about future medical and long-term care. In practice, ACP requires sufficient discussion among patients, caregivers, and health providers.
The participants preferred that the physician in charge of a patient's care and other healthcare professionals provide the QPL. In terms of when to provide the QPL, “during first-line treatment” and “during second-line treatment” were preferred. Chemotherapy treatment options for pancreatic cancer are currently limited, so it is necessary for patients, family caregivers, and physicians to hold discussions in the context of early integration of cancer treatment and palliative care. The American Society of Clinical Oncology recommends discussing prognosis and treatment options from the start of treatment and clarifying patients’ wishes for the end of life (Peppercorn et al., Reference Peppercorn, Smith and Helft2011).
This study has three main limitations. First, the sample size was small, with only 18 participants comprising patients with pancreatic cancer, caregivers, bereaved family members, and hepatobiliary-pancreatic oncologists. However, various interviews were carried out until saturation was reached and both the quality and quantity of the interviews were sufficient. Second, all of the patients in this study had pancreatic cancer and were relatively young, so caution should be exercised when generalizing the results. Third, the physicians provided more utterances compared with the patients. Individual differences in preferences for end-of-life discussions were observed between patients and physicians.
Using the group interview data, in future work we will develop a QPL and assess each item. In addition, we are planning a study to evaluate the efficacy of an integrated communication support program including QPL for patients with rapidly progressing advanced cancer and their caregivers. In conclusion, data were collected to develop a QPL that encourages end-of-life discussions between patients with advanced cancer and their physicians.
The supplementary material for this article can be found at https://doi.org/10.1017/S1478951521001796.
The authors would like to thank the patients and healthcare professionals who gave their time and shared their experiences during this study.
This study is supported by a Grant-in-Aid for Japan Agency for Medical Research and Development (no. JP 17ck0106237h0001), Project Mirai Cancer Research Grants, and the Grant-in-Aid from Japanese Ministry of Health Labor and Welfare (grant no. JPMH19EA1017).
Conflict of interest
The authors declare that there is no conflict of interest in this study.