Abstract
Background
End-of-life discussions for patients with advanced cancer are internationally recommended to ensure consistency of end-of-life care with patients’ values. This study examined the elements of end-of-life discussions associated with end-of-life care.
Materials and Methods
We performed a prospective observational study among consecutive patients with pretreated non-small cell lung cancer after the failure of first-line chemotherapy. We asked oncologists whether they had ever discussed “prognosis,” “do not attempt resuscitation,” “hospice,” and “preferred place of death” with a patient at baseline. The quality of life (QOL) and depressive symptoms of patients were assessed using validated questionnaires at baseline and 3 months later. The end-of-life care that patients received was investigated using medical records. Oncologists’ compassion and caregivers’ preferences for hospice care were also assessed using questionnaires. Multiple regression analyses were conducted to examine the association between elements of end-of-life discussions and patient-reported outcomes as well as actual end-of-life care.
Results
We obtained 200 valid responses at baseline, 147 valid responses 3 months later, and 145 data points for medical care at the end-of-life stage. No element of the end-of-life discussion between the patient and their oncologist was significantly associated with patients’ reported outcomes or actual end-of-life care. In addition, oncologists’ compassion was significantly associated with improvement in both comprehensive QOL and depressive symptoms, and caregivers’ preferences for hospice care and high educational level were significantly associated with hospice death.
Conclusion
Oncologist-patient alliances and caregivers’ involvement in end-of-life discussions may be influential in achieving optimal end-of-life care.
Keywords: neoplasm, lung cancer, end-of-life discussion, communication, advance care planning, palliative care
This study evaluated elements of end-of-life discussion on comprehensive quality of life and depressive symptoms in patients with incurable non-small cell lung cancer, as well as which elements are most associated with care decisions and the role of oncologists’ empathy and caregivers’ preferences in such decisions.
Implications for Practice.
None of the elements of the end-of-life discussions between patients with pretreated non-small cell lung cancer and their oncologists were significantly associated with patients’ reported outcomes, including quality of life (QOL) and depressive symptoms, or actual end-of-life care, such as hospice death. Oncologists’ compassion was significantly associated with improvement in both comprehensive QOL and fewer depressive symptoms, and caregivers’ preferences for hospice care and high educational level were significantly associated with hospice death. Oncologist-patient alliances and caregivers’ involvement in end-of-life discussions may be influential in achieving optimal end-of-life care.
Introduction
The value of end-of-life discussions and advance care planning have been increasingly recognized in enhancing the quality of end-of-life care.1 The purpose of end-of-life discussions is to ensure that the patient receives medically appropriate care consistent with their values.2,3 End-of-life discussions can reduce aggressive end-of-life care, which is associated with an even worse quality of life (QOL).4 In a previous systematic review, end-of-life discussions were defined as any conversation about the goal of end-of-life care or treatment preferences with a healthcare provider or trained facilitator, documented in medical records or self-reported by patients, surrogates, or documentation.5 End-of-life discussions do not address a single topic, but address multiple related to the goals of end-of-life care.6,7 Among them, important elements include discussions related to prognosis, preferred site of death, hospice care, and not attempting resuscitation in patients with advanced cancer.8,9 Generally, end-of-life discussions in patients with cancer take place near the end-of-life in the illness trajectory and often during hospital admission.10
Evidence of the effectiveness of end-of-life discussions on patients’ QOL is limited.11 We are not aware of a study that has investigated what elements of end-of-life discussions are associated with comprehensive QOL. This study seeks to evaluate the effects of each element of end-of-life discussion on comprehensive QOL in patients with incurable non-small cell lung cancer (NSCLC), with a life expectancy of ≤1 year. Oncologists are often concerned that end-of-life discussions may increase psychological distress in patients.
Thus, this study also evaluates the effects of each element of end-of-life discussions on patients’ depressive symptoms. It also investigates what elements of end-of-life discussions are associated with end-of-life care, including the place of death and aggressive end-of-life care.12,13 In addition, increased attention has been paid toward the patient-oncologist relationship14,15 and the disagreement between patient and caregiver preferences for end-of-life care.16 Thus, we also examine whether oncologists’ empathy and caregivers’ preferences for end-of-life care affect it.
Materials and Methods
Study design
This study is part of a longitudinal study focusing on prognostic awareness that we had initially planned and had previously reported.17 The details of the study design have been described elsewhere. Briefly, we prospectively studied patients with advanced or postoperative NSCLC recurrence at 4 sites in Japan. Consecutive patients who attended medical follow-up appointments with the participating oncologists were screened. The institutional review board at each site approved the study protocol. The study was conducted in accordance with the principles of the Declaration of Helsinki. All patients were provided with a detailed description of the purpose and methods of the study before completing the questionnaire. Written informed consent was obtained from all the patients. The study was registered with the University Hospital Medical Information Network (UMIN000026436).
Patients
Patients were included if they were (1) diagnosed with stage IIIB not amenable to curative treatment, stage IV, or postoperative recurrent NSCLC; (2) aged ≥20 years; (3) at the stage within 2 months after the failure of first-line chemotherapy; and (4) able to understand written or spoken Japanese. The exclusion criteria were as follows: (1) too ill to complete the questionnaire, (2) severe mental disorders, (3) severe cognitive disorders, or (4) judgment by the treating oncologist as unsuitable for participation. We also included patients with NSCLC with targetable genetic aberrations whose disease progressed after chemotherapy and whose prior therapy included molecular-targeted therapy.
Measurement
Elements of End-of-Life Discussion Reported by Oncologists
To assess the status of end-of-life discussion, we asked oncologists if they had ever discussed the following with a patient: “prognosis,” “do not attempt resuscitation,” “hospice,” and “preferred place of death.”8-10 Response options for each of these questions were “yes” or “no.”
Patients’ Reported Outcomes
Quality of Life
We measured the comprehensive QOL of patients using the Comprehensive QOL Outcome (CoQoLo) inventory,18 which is a validated and reliable tool for measuring QOL based on the concept of good death in patients with advanced cancer. We used a short version of the CoQoLo. This scale is capable of comprehensively measuring QOL outcomes independent of patients’ general physical condition. Higher values indicated better comprehensive QOL.
Depressive Symptoms
Depressive symptoms were measured using the Patient Health Questionnaire-9 (PHQ-9).19 Higher values indicated more severe depressive symptoms. The PHQ-9 has been validated in a Japanese population.20
Actual End-of-Life Care
Place of Death
Place of death was categorized into home hospice, acute care unit (cancer hospital), inpatient hospice/palliative care unit, and long-term care hospital.
Intensity of End-of-Life Care
High-intensity end-of-life (HI-EOL) care consisted of the following: ≥one session of IV chemotherapy in <14 days from death, starting a new IV chemotherapy regimen in <30 days from death, ≥one hospitalization in an intensive care unit (ICU) during the final 30 days of life, >one emergency room admission during the final 30 days of life, or >one hospitalization in an acute care unit during the final 30 days of life.21 Most invasive end-of-life (MI-EOL) care consisted of the following: death in the ICU, intubation and/or ventilation during the final 30 days of life, or cardiopulmonary resuscitation during the final 30 days of life. We defined intensive end-of-life care as HI-EOL and/or MI-EOL care.
Preferred Place of End-of-Life Care
We asked patients, “At end-of-life care, where would you rather get treatment when you have a difficulty in transportation to visit outpatient medical facilities.” The response options were “home hospice,” “hospital,” or “inpatients hospice/palliative care unit.” Patients and caregivers were asked to complete the questionnaire at baseline.
Participants who chose “home hospice” or “inpatients hospice/palliative care unit” were coded as “preferring hospice care.” Participants who chose “hospital” were coded as “preferring hospital care.” We measured both patients’ and caregivers’ preferred places of end-of-life care as independent factors in exploring the association between hospice death and end-of-life discussions. This is because in East Asian countries, including Japan, there is a tendency to prioritize the wishes of the caregiver over those of the patient, known as family-centered decision-making.22
Oncologist Compassion
Oncologist compassion was measured using the Physician Compassion Questionnaire (PCQ). This scale comprises 5 dimensions: warm/cold, pleasant/unpleasant, compassionate/distant, sensitive/insensitive, and caring/uncaring. Each dimension is scored on a scale of 0 to 10. The sum of the 5 scales yields a final score of 0-50 points. Lower scores indicate greater physician compassion (0 = best, 50 = worst).23,24 We measured oncologist compassion assuming that it is associated with communication between the oncologist and the patient, which relates to patients’ psychological distress and QOL.14,15,25
Perceptions of Incurability
We asked patients, “How would you describe your current health condition?” The response options were “good, curable”; “serious, but curable”; “good, but incurable”; “serious, incurable”; “I don’t know”; or “I don’t wish to answer,” with reference to previous studies.26,27 Patients who chose “good, but incurable” or “serious, incurable” were designated as having “accurate perception of incurability.” Patients who responded “good, curable”; “serious, but curable”; “I don’t know”; or “I don’t wish to answer” were designated as “inaccurate perception of incurability.”
Data Collection
Patients completed a baseline questionnaire, including demographic characteristics, CoQoLo, PHQ-9, PCQ, perceptions of incurability, and preferred place of end-of-life care, within 2 months after progressive disease of first-line chemotherapy. We administered follow-up assessments to them 3 months later (or at a clinic visit within 4 weeks of that time). Follow-up assessments included the CoQoLo and PHQ-9. The caregivers who participated in this study were identified as primary caregivers, and they completed a baseline questionnaire that included demographic characteristics and their preferred place of end-of-life care. The researchers contacted participants in case they found unanswered data. We obtained patient characteristics, including age and sex, HI-EOL care, MI-EOL care, and place of death, from medical records. Performance status and lung cancer histology were obtained from oncologists at baseline.
Statistics
The analyses began with descriptive summaries of the demographic and clinical variables. In addition, we summarized the reported end-of-life discussions.
To investigate whether each element of end-of-life discussions was associated with changes in patient-reported outcomes (CoQoLo or PHQ-9) from baseline to 3 months later, a multiple logistic regression analysis was performed after adjusting for age, education, baseline score (CoQoLo or PHQ-9), oncologist compassion (PCQ score), and perception of incurability (accurate/inaccurate).14,15,25 In addition, the association between each element of end-of-life discussions and place of death (inpatient or home hospices/acute care unit) was examined using multiple logistic regression analysis adjusted for age, education, oncologist compassion (PCQ score), perception of incurability (accurate/inaccurate), and preferred place of end-of-life care (patient and caregiver preferences).28 The association between the intensity of end-of-life care and end-of-life discussions could not be evaluated because only a small number of patients received intensive end-of-life care.
Statistical significance was set at P < .05. Statistical analyses were performed using SPSS v.28.0 (IBM Corp., Armonk, NY, USA).
Results
Flow Diagram and Characteristics of Patients and Caregivers
During the study period, 300 potential participants were identified, 222 of whom were eligible and 200 returned valid questionnaire responses (Fig. 1). All patients who participated received anticancer treatment at baseline. Valid responses were obtained from 147 patients after 3 months. Table 1 summarizes participants’ characteristics. The place of death and intensity of end-of-life care were obtained from 145 patients. The median (95% confidence interval [CI]) overall survival was 254 days (range = 221-287).
Figure 1.

Flow chart showing recruitment of participants and follow-up.
Table 1.
Patient and caregiver characteristics.
| Patients | Caregivers | |||
|---|---|---|---|---|
| Characteristic | Baseline (within 2 months after first-line failure), n = 200 | 3 months later, n = 147 | Deceased during study period, n = 145 | Baseline (within 2 months after first-line failure), n = 180 |
| Total n (%) | Total n (%) | Total n (%) | Total n (%) | |
| Age (years) | ||||
| Mean (SD) | 65.1 (10.0) | 65.4 (9.9) | 66.1 (9.7) | 58.8 (13.2) |
| Sex | ||||
| Male | 137 (68.5) | 102 (69.4) | 101 (69.7) | 63 (35.0) |
| Female | 63 (31.5) | 45 (30.6) | 44 (30.3) | 116 (64.4) |
| Marital status | ||||
| Married | 158 (79.0) | 121 (82.3) | 115 (79.3) | Not assessed |
| Other | 42 (21.0) | 26 (17.7) | 30 (20.7) | Not assessed |
| Relationship with patient | ||||
| Spouse | Not applicable | Not applicable | Not applicable | 125 (69.4) |
| Child | Not applicable | Not applicable | Not applicable | 34 (18.9) |
| Parent | Not applicable | Not applicable | Not applicable | 8 (4.4) |
| Sibling | Not applicable | Not applicable | Not applicable | 8 (4.4) |
| Other | Not applicable | Not applicable | Not applicable | 5 (2.8) |
| Education | ||||
| ≥High school | 161 (80.5) | 124 (84.4) | 112 (77.2) | 160 (88.9) |
| <High school | 38 (19.0) | 23 (15.6) | 32 (22.1) | 19 (10.6) |
| Occupation | ||||
| Paid or self-employed (full-time) | 31 (15.5) | 25 (17.0) | 23(15.9) | 46 (25.6) |
| Paid employee (part-time) | 15 (7.5) | 12 (8.2) | 11 (7.6) | 33 (18.3) |
| Homemaker | 29 (14.5) | 21 (14.3) | 18 (12.4) | 59 (32.8) |
| Retirement | 100 (50.0) | 77 (52.4) | 74 (51.0) | 30 (16.7) |
| Other | 24 (12.0) | 12 (8.2) | 18 (12.4) | 12 (6.7) |
| Living condition | ||||
| Living with someone | 175 (87.5) | 131 (89.1) | 126 (86.9) | Not assessed |
| Living alone | 25 (12.5) | 16 (10.9) | 19 (13.1) | Not assessed |
| PS | ||||
| 0 | 72 (36.0) | 62 (42.2) | 45 (31.0) | Not applicable |
| 1 | 117 (58.5) | 81 (55.1) | 91 (62.8) | Not applicable |
| 2 | 11 (5.5) | 4 (2.7) | 9 (6.2) | Not applicable |
| Histology | ||||
| Non-Sq | 150 (75.0) | 112 (76.2) | 108 (74.5) | Not applicable |
| Sq | 50 (25.0) | 35 (23.8) | 37 (25.5) | Not applicable |
Some items did not reach the total number due to missing values.
Abbreviations: PS: Eastern Cooperative Oncology Group performance status; Sq: squamous cell carcinoma.
Frequency of Each Element of End-of-Life Discussion
There were wide variations in the frequency of each element of end-of-life discussions: “prognosis” (23.5%) was the most frequently reported, followed by “do not attempt resuscitation (9.0%),” “hospice (8.5%),” and “preferred place of death (3.5%).”
Association Between Each Element of End-of-Life Discussions and Patient-Reported Outcomes (QOL and Depression)
The mean (±SD) CoQoLo score was 52.9 (±7.6) at baseline and 54.4 (±8.6) at 3 months. The mean (±SD) PHQ-9 score was 6.2 (±4.8) at baseline and 5.2 (±4.2) at 3 months. The mean (± SD) PCQ score was 12.8 (±9.8) at baseline.
Multiple regression analysis revealed that end-of-life discussions and the perception of incurability were not associated with changes in CoQoLo or PHQ-9 scores (Table 2). However, an improvement in the CoQoLo score was significantly associated with greater oncologist compassion and younger age (<75 years). Worsening of the PHQ-9 score was significantly associated with low oncologist compassion.
Table 2.
Association between each element of end-of-life discussions and patient-reported outcomes (QOL and depression) or hospice deaths.
| Improvement of CoQoLo score, n = 147 | Worsen of PHQ-9 score, n = 147 | Death at hospice, n = 145 | ||||
|---|---|---|---|---|---|---|
| β-coefficients (95% CI) | P | β-coefficients (95% CI) | P | Adjusted odds ratio (95% CI) | P | |
| Characteristic | ||||||
| EOLd (prognosis) | −0.08 (−3.92 to 1.44) | .36 | 0.08 (−0.69 to 2.34) | .28 | 1.05 (0.41 to 2.66) | .93 |
| EOLd (DNAR) | −0.10 (−8.05 to 2.37) | .28 | 0.11 (−0.86 to 4.94) | .17 | 1.95 (0.36 to 10.69) | .44 |
| EOLd (hospice) | −0.06 (−8.26 to 4.98) | .62 | 0.03 (−2.86 to 3.79) | .78 | 0.18 (0.02 to 1.90) | .15 |
| EOLd (place of death) | 0.01 (−8.06 to 9.02) | .91 | −0.03 (−5.34 to 4.14) | .80 | 0.70 (0.03 to 18.90) | .83 |
| Oncologist compassion | −0.33 (−0.35 to −0.11) | <.001 | 0.23 (0.03 to 0.17) | .004 | 1.01 (0.97 to 1.05) | .72 |
| Perception of incurability (accurate) | −0.03 (−2.64 to 1.84) | .73 | 0.04 (−0.96 to 1.62) | .62 | 1.18 (0.52 to 2.68) | .69 |
| Patient’s preference for hospice care | - | - | - | - | 0.98 (0.40 to 2.40) | .95 |
| Caregiver’s preference for hospice care | - | - | - | - | 2.54 (1.04 to 6.19) | .041 |
| Age (≥75 years) | −0.20 (−6.56 to −0.64) | .017 | 0.12 (−0.32 to 3.09) | .11 | 2.33 (0.82 to 6.60) | .11 |
| Education (≥ high school) | −0.05 (−3.92 to 2.15) | .57 | -0.04 (−2.24 to 1.22) | .56 | 6.28 (2.06 to 19.15) | .001 |
| CoQoLo score | −0.44 (−0.55 to −0.24) | <.001 | - | - | - | - |
| PHQ-9 score | - | - | −0.67 (−0.76 to −0.49) | <.001 | - | - |
Abbreviations: QOL: quality of life; EOLd: end-of-life discussion; DNAR: do not attempt resuscitation; CoQoLo: Comprehensive Quality of Life Outcome; PHQ-9: Patient Health Questionnaire-9.
Association Between Each Element of End-of-Life Discussions and Place of Death
Place of death data are presented in Table 3 (ICU death data are presented in Table 4): 46.9% (95% CI, 38.6%-55.4%) of patients died in inpatient hospices or home hospices and 35.2% (95% CI, 27.4%-43.5%) died in the acute care unit of a cancer hospital.
Table 3.
Place of death.
| Place of death | n | % |
|---|---|---|
| Acute care unit (cancer hospital) | 51 | 35.2 |
| Home hospice | 38 | 26.2 |
| Inpatient hospice/palliative care unit | 30 | 20.7 |
| Long-term care hospital | 21 | 14.5 |
| Other | 5 | 3.4 |
Table 4.
Intensity of end-of-life care during the final 30 days of life.
| Intense and invasive care | n | % |
|---|---|---|
| High-intensity end-of-life care | 27 | 18.6 |
| Intravenous chemotherapy within 14 days before death | 3 | 2.1 |
| Starting a new IV chemotherapy regimen within 30 days before death | 9 | 6.2 |
| >One emergency room visit within 30 days before death | 4 | 2.8 |
| >One hospitalization | 18 | 12.4 |
| ICU admission within 30 days before death | 1 | 0.7 |
| Most invasive end-of-life care | 3 | 2.1 |
| ICU death | 1 | 0.7 |
| Intubation and/or ventilation within 30 days before death | 2 | 1.4 |
| Cardiopulmonary resuscitation within 30 days before death | 3 | 2.1 |
Abbreviation: ICU: intensive care unit.
Multiple logistic regression analysis revealed that no element of end-of-life discussion was associated with hospice death (home hospice or inpatient hospice/palliative care unit; Table 2). However, caregivers’ preference for hospice care at baseline and patient’s education level (≥high school) were significantly associated with death at hospice (home hospice or inpatient hospice/palliative care unit).
Intensity of End-of-Life Care
The intensity of the end-of-life treatment is shown in Table 4. Among the 145 deceased patients, 18.6% (95% CI, 12.6%-25.9%) underwent HI-EOL care and 2.1% (95% CI, 0.2%-4.9%) underwent MI-EOL care. We could not evaluate the association between the intensity of end-of-life care and end-of-life discussions because only a small number of patients received HI-EOL and/or MI-EOL care.
Additional Findings
Preferred places of end-of-life care are presented in Table 5. A total of 137 (68.5%) patients (95% CI, 61.6-74.9) and 110 (61.1%) caregivers preferred hospice care at baseline (95% CI, 53.6-68.3).
Table 5.
Place preferred for end-of-life care.
| Patients | Caregivers | |
|---|---|---|
| Preferred place of end-of-life care | Baseline, n = 200 n (%) |
Baseline, n = 180 n (%) |
| Acute care unit (cancer hospital) | 61 (30.5) | 65 (36.1) |
| Home hospice | 83 (41.5) | 54 (30.0) |
| Inpatient hospice/palliative care unit | 54 (27.0) | 56 (31.1) |
The agreement between patients’ and caregivers’ preferred place of end-of-life care at baseline was 56%.
Discussion
To the best of our knowledge, this is the first prospective cohort study to examine how different aspects of end-of-life discussions relate to patient-reported outcomes, including QOL (representing important aspects of a good death) and depressive symptoms in patients with advanced or postoperative recurrent NSCLC.
This study had several strengths. First, prior studies have recommended advance care planning for patients similar to those included in this study (life expectancy of ≤1 year, tumor progression after prior therapy, etc.).1 Second, the study cohort comprised consecutive eligible patients at multiple study sites, and the rates of refusal and missing data for medical care near death were within acceptable limits.
The first major finding was that none of the elements of end-of-life discussions were associated with QOL based on the concept of good death. In a previous scoping review, advance care planning intervention for patients with advanced cancer had no effect on the generic QOL.7,29 Advance care planning interventions are designed to ensure that patients receive care that is consistent with their goals.2,3,30 Its most appropriate goal is not to improve QOL. The end-of-life discussions measured in this study may not have directly improved QOL based on the concept of good death. Alternatively, the timing of the measurement of QOL (at 3 months after first-line chemotherapy failure) might have been too early to determine whether each element of the end-of-life discussion was effective for QOL.31 The possibility remains that end-of-life discussions could be effective for improving the QOL just before death (called the quality of death and dying). The finding that end-of-life discussions were not associated with the worsening of depressive symptoms is also consistent with a previous scoping review.29 It appears that oncologists do not have to avoid end-of-life discussions out of a concern for worsening patients’ depressive symptoms. Perception of incurability was not associated with QOL based on the concept of good death and depressive symptoms.
The second major finding was that end-of-life discussions about the preferred place of death were not associated with death in hospice care. The association between hospice use and end-of-life discussions remains controversial as in the previous reports.11 A finding in one previous cohort study (Cancer Care Outcomes Research and Surveillance [CanCORS]), found that patients who had end-of-life discussions were more likely to receive hospice care than those who did not have these discussions.32 This inconsistency between this study and CanCORs could be owing to various factors. First, this study had fewer end-of-life discussions with oncologists, and the identification of end-of-life discussions in this study occurred earlier than that in the CanCORS study. Second, the low rate of invasive end-of-life care in Japan could have influenced our findings. The impact of end-of-life discussions on end-of-life care may not be observed because aggressive end-of-life care is rarely offered.33 Third, cultural differences must be considered, as families have a greater influence on decision-making. Our study revealed that death during hospice care was not associated with patient preference for hospice care but was associated with caregiver preference. Thus, end-of-life discussions between patients and their oncologists may not affect the place of death in Japan. Traditionally, family-centered decision-making has been conducted in East Asian countries.34,35 However, the importance of caregiver involvement in decision-making is being recognized internationally, not only in Asia; and how to involve caregivers is an important issue.36,37 Another finding was that less-educated patients were less likely to receive hospice care; that is, less-educated patients might need to be supported in decision-making.
Of note, greater oncologist compassion was significantly associated with an improved QOL. Moreover, low oncologist compassion was significantly associated with worsening depressive symptoms. These findings are consistent with those of a previous study reporting that oncologists’ compassion has the potential to alleviate patients’ psychological distress.23 These findings suggest the importance of enhancing the care of patients at the moment, rather than talking about future end-of-life care.38 Alternatively, an empathetic oncologist could provide psychological care or symptom management to alleviate patients’ psychological distress.
This study had several limitations. First, the questionnaire used to assess the preferred place for end-of-life care was not fully validated. However, face validity was confirmed in a pilot test involving 5 patients with cancer. Second, this is a prospective cohort study and not an interventional trial. It documents the presence of elements in end-of-life discussions without evaluating their quality. Third, this study was conducted at 4 institutions. Our findings cannot be generalized to other settings such as other types and clinical stages of cancer. Fourth, there could have been recall bias in the questionnaires used to evaluate the provision of end-of-life discussions between patients and their oncologists. Fifth, building upon existing research, this study focuses on 4 elements that are deemed foundational among these diverse components. However, it is widely recognized that end-of-life discussions encompass a broad range of variations. It is important to acknowledge the existence of key aspects that are not addressed in this study, such as engaging in conversations regarding patients’ goals and values and symptom management.39
Conclusion
Our findings suggest that none of the elements of end-of-life discussions are associated with the quality of end-of-life care, including QOL, based on the concepts of good death, depressive symptoms, and place of death. Further research is needed to examine the importance of oncologists having empathetic discussions with their patients, along with their caregivers.
Contributor Information
Takaaki Hasegawa, Center for Psycho-oncology and Palliative Care, Nagoya City University Hospital, Nagoya, Aichi, Japan.
Toru Okuyama, Center for Psycho-oncology and Palliative Care, Nagoya City University Hospital, Nagoya, Aichi, Japan; Department of Psychiatry and Cognitive-Behavioral Medicine, Nagoya City University Graduate School of Medical Sciences, Nagoya, Aichi, Japan; Department of Psychiatry/Palliative Care Center, Nagoya City University West Medical Center, Nagoya, Aichi, Japan.
Takehiro Uemura, Department of Respiratory Medicine, Allergy and Clinical Immunology, Nagoya City University Graduate School of Medical Sciences, Nagoya, Aichi, Japan; Department of Thoracic Oncology, Aichi Cancer Center Hospital, Nagoya, Aichi, Japan.
Yoshinobu Matsuda, Department of Psychosomatic Internal Medicine, National Hospital Organization, Kinki-Chuo Chest Medical Center, Sakai, Osaka, Japan.
Hiroyuki Otani, Department of Palliative Care Team, Palliative and Supportive Care, National Hospital Organization Kyushu Cancer Center, Fukuoka, Fukuoka, Japan; Department of Palliative Care Team, Palliative and Supportive Care, St. Mary’s Hospital, Kurume, Fukuoka, Japan.
Junichi Shimizu, Department of Thoracic Oncology, Aichi Cancer Center Hospital, Nagoya, Aichi, Japan.
Yoshitsugu Horio, Department of Thoracic Oncology, Aichi Cancer Center Hospital, Nagoya, Aichi, Japan.
Naohiro Watanabe, Department of Thoracic Oncology, Aichi Cancer Center Hospital, Nagoya, Aichi, Japan.
Teppei Yamaguchi, Department of Thoracic Oncology, Aichi Cancer Center Hospital, Nagoya, Aichi, Japan.
Satoshi Fukuda, Department of Respiratory Medicine, Allergy and Clinical Immunology, Nagoya City University Graduate School of Medical Sciences, Nagoya, Aichi, Japan.
Tetsuya Oguri, Department of Respiratory Medicine, Allergy and Clinical Immunology, Nagoya City University Graduate School of Medical Sciences, Nagoya, Aichi, Japan; Department of Education and Research Center for Community Medicine, Nagoya City University Graduate School of Medical Sciences, Nagoya, Aichi, Japan.
Ken Maeno, Department of Respiratory Medicine, Allergy and Clinical Immunology, Nagoya City University Graduate School of Medical Sciences, Nagoya, Aichi, Japan.
Yoshihiko Taniguchi, Department of Internal Medicine, National Hospital Organization, Kinki-Chuo Chest Medical Center, Sakai, Osaka, Japan.
Kaname Nosaki, Department of Thoracic Oncology, National Hospital Organization Kyushu Cancer Center, Fukuoka, Fukuoka, Japan; Department of Thoracic Oncology, National Cancer Center Hospital East, Kashiwa, Chiba, Japan.
Kensuke Fukumitsu, Department of Respiratory Medicine, Allergy and Clinical Immunology, Nagoya City University Graduate School of Medical Sciences, Nagoya, Aichi, Japan.
Tatsuo Akechi, Center for Psycho-oncology and Palliative Care, Nagoya City University Hospital, Nagoya, Aichi, Japan; Department of Psychiatry and Cognitive-Behavioral Medicine, Nagoya City University Graduate School of Medical Sciences, Nagoya, Aichi, Japan.
Funding
This work was supported in part by the Grants-in-Aid for Scientific Research from the Japanese Society for the Promotion of Science, Japan (Grant Numbers 16K08878 to T.O. and 19K19568 to T.H.).
Conflict of Interest
Yoshinobu Matsuda has received honoraria from Nippon Boehringer Ingelheim Co., Ltd. and Chugai Pharmaceutical Co., Ltd. The other authors indicated no financial relationships.
Author Contributions
Conception/design: T.H., T.O., T.A. Provision of study material or patients: T.H., T.U., Y.M., H.O., J.S., Y.H., N.W., T.Y., S.F., T.O., K.M., Y.T., K.N., K.F. Collection and/or assembly of data: All authors. Data analysis and interpretation: T.H., T.O. Manuscript writing: T.H., T.O. Final approval of manuscript: All authors.
Data Availability
The data underlying this article will be shared on reasonable request to the corresponding author.
References
- 1. Gilligan T, Coyle N, Frankel RM, et al. Patient-clinician communication: American Society of Clinical Oncology consensus guideline. J Clin Oncol. 2017;35(31):3618-3632. 10.1200/JCO.2017.75.2311 [DOI] [PubMed] [Google Scholar]
- 2. Rietjens JAC, Sudore RL, Connolly M, et al. Definition and recommendations for advance care planning: an international consensus supported by the European Association for Palliative Care. Lancet Oncol. 2017;18(9):e543-e551. 10.1016/S1470-2045(17)30582-X [DOI] [PubMed] [Google Scholar]
- 3. Sudore RL, Lum HD, You JJ, et al. Defining advance care planning for adults: a consensus definition from a multidisciplinary Delphi panel. J Pain Symptom Manage. 2017;53(5):821-832.e1. 10.1016/j.jpainsymman.2016.12.331 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 4. Wright AA, Zhang B, Ray A, et al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA. 2008;300(14):1665-1673. 10.1001/jama.300.14.1665 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 5. Starr LT, Ulrich CM, Corey KL, Meghani SH.. Associations among end-of-life discussions, health-care utilization, and costs in persons with advanced cancer: a systematic review. Am J Hosp Palliat Care. 2019;36(10):913-926. 10.1177/1049909119848148 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 6. Bernacki RE, Block SD; American College of Physicians High Value Care Task Force. Communication about serious illness care goals: a review and synthesis of best practices. JAMA Intern Med. 2014;174(12):1994-2003. 10.1001/jamainternmed.2014.5271 [DOI] [PubMed] [Google Scholar]
- 7. Ryan RE, Connolly M, Bradford NK, et al. Interventions for interpersonal communication about end of life care between health practitioners and affected people. Cochrane Database Syst Rev. 2022;7(7):CD013116. 10.1002/14651858.CD013116.pub2 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 8. Mori M, Shimizu C, Ogawa A, et al. A national survey to systematically identify factors associated with oncologists’ attitudes toward end-of-life discussions: what determines timing of end-of-life discussions?. Oncologist. 2015;20(11):1304-1311. 10.1634/theoncologist.2015-0147 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 9. Keating NL, Landrum MB, Rogers SO Jr, et al. Physician factors associated with discussions about end-of-life care. Cancer. 2010;116(4):998-1006. 10.1002/cncr.24761 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 10. Mack JW, Cronin A, Taback N, et al. End-of-life care discussions among patients with advanced cancer: a cohort study. Ann Intern Med. 2012;156(3):204-210. 10.7326/0003-4819-156-3-201202070-00008 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 11. Jimenez G, Tan WS, Virk AK, et al. Overview of systematic reviews of advance care planning: summary of evidence and global lessons. J Pain Symptom Manage. 2018;56(3):436-459.e25. 10.1016/j.jpainsymman.2018.05.016 [DOI] [PubMed] [Google Scholar]
- 12. Wright AA, Keating NL, Balboni TA, et al. Place of death: correlations with quality of life of patients with cancer and predictors of bereaved caregivers’ mental health. J Clin Oncol. 2010;28(29):4457-4464. 10.1200/JCO.2009.26.3863 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 13. Kinoshita H, Maeda I, Morita T, et al. Place of death and the differences in patient quality of death and dying and caregiver burden. J Clin Oncol. 2015;33(4):357-363. 10.1200/JCO.2014.55.7355 [DOI] [PubMed] [Google Scholar]
- 14. Thomas T, Althouse A, Sigler L, et al. Stronger therapeutic alliance is associated with better quality of life among patients with advanced cancer. Psychooncology. 2021;30(7):1086-1094. 10.1002/pon.5648 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 15. Samuel CA, Mbah O, Schaal J, et al. The role of patient-physician relationship on health-related quality of life and pain in cancer patients. Support Care Cancer. 2020;28(6):2615-2626. 10.1007/s00520-019-05070-y [DOI] [PubMed] [Google Scholar]
- 16. Mulcahy Symmons S, Ryan K, Aoun SM, et al. Decision-making in palliative care: patient and family caregiver concordance and discordance-systematic review and narrative synthesis. BMJ Support Palliat Care. 2022:bmjspcare-bmjsp2022. 10.1136/bmjspcare-2022-003525 [DOI] [PMC free article] [PubMed]
- 17. Hasegawa T, Okuyama T, Uemura T, et al. Prognostic awareness and discussions of incurability in patients with pretreated non-small cell lung cancer and caregivers: a prospective cohort study. Oncologist. 2022;27(11):982-990. 10.1093/oncolo/oyac178 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 18. Miyashita M, Wada M, Morita T, et al. Development and validation of the Comprehensive Quality of Life Outcome (CoQoLo) inventory for patients with advanced cancer. BMJ Support Palliat Care. 2019;9(1):75-83. 10.1136/bmjspcare-2014-000725 [DOI] [PubMed] [Google Scholar]
- 19. Spitzer RL, Kroenke K, Williams JB.. Validation and utility of a self-report version of PRIME-MD: the PHQ primary care study. Primary care evaluation of mental disorders. Patient health questionnaire. JAMA. 1999;282(18):1737-1744. 10.1001/jama.282.18.1737 [DOI] [PubMed] [Google Scholar]
- 20. Muramatsu K, Miyaoka H, Kamijima K, et al. The patient health questionnaire, Japanese version: validity according to the mini-international neuropsychiatric interview-plus. Psychol Rep. 2007;101(3 Pt 1):952-960. 10.2466/pr0.101.3.952-960 [DOI] [PubMed] [Google Scholar]
- 21. Earle CC, Neville BA, Landrum MB, et al. Trends in the aggressiveness of cancer care near the end of life. J Clin Oncol. 2004;22(2):315-321. 10.1200/JCO.2004.08.136 [DOI] [PubMed] [Google Scholar]
- 22. Morita T, Oyama Y, Cheng SY, et al. Palliative care physicians’ attitudes toward patient autonomy and a good death in East Asian countries. J Pain Symptom Manage. 2015;50(2):190-9.e1. 10.1016/j.jpainsymman.2015.02.020 [DOI] [PubMed] [Google Scholar]
- 23. Fogarty LA, Curbow BA, Wingard JR, McDonnell K, Somerfield MR.. Can 40 seconds of compassion reduce patient anxiety?. J Clin Oncol. 1999;17(1):371-379. 10.1200/JCO.1999.17.1.371 [DOI] [PubMed] [Google Scholar]
- 24. Mori M, Fujimori M, Hamano J, Naito AS, Morita T.. Which physicians’ behaviors on death pronouncement affect family-perceived physician compassion? A randomized, scripted, video-vignette study. J Pain Symptom Manag. 2018;55(2):189-197.e4. 10.1016/j.jpainsymman.2017.08.029 [DOI] [PubMed] [Google Scholar]
- 25. Neumann M, Wirtz M, Bollschweiler E, et al. Determinants and patient-reported long-term outcomes of physician empathy in oncology: a structural equation modelling approach. Patient Educ Couns. 2007;69(1-3):63-75. 10.1016/j.pec.2007.07.003 [DOI] [PubMed] [Google Scholar]
- 26. Mack JW, Weeks JC, Wright AA, Block SD, Prigerson HG.. End-of-life discussions, goal attainment, and distress at the end of life: predictors and outcomes of receipt of care consistent with preferences. J Clin Oncol. 2010;28(7):1203-1208. 10.1200/JCO.2009.25.4672 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 27. Oishi T, Sato K, Morita T, et al. Patient perceptions of curability and physician-reported disclosures of incurability in Japanese patients with unresectable/recurrent cancer: a cross-sectional survey. Jpn J Clin Oncol. 2018;48(10):913-919. 10.1093/jjco/hyy112 [DOI] [PubMed] [Google Scholar]
- 28. Hui D, Mo L, Paiva CE.. The importance of prognostication: impact of prognostic predictions, disclosures, awareness, and acceptance on patient outcomes. Curr Treat Options Oncol. 2021;22(2):12. 10.1007/s11864-020-00810-3 [DOI] [PubMed] [Google Scholar]
- 29. McMahan RD, Tellez I, Sudore RL.. Deconstructing the complexities of advance care planning outcomes: what do we know and where do we go? A scoping review. J Am Geriatr Soc. 2021;69(1):234-244. 10.1111/jgs.16801 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 30. Sudore RL, Heyland DK, Lum HD, et al. Outcomes that define successful advance care planning: a Delphi panel consensus. J Pain Symptom Manage. 2018;55(2):245-255.e8. 10.1016/j.jpainsymman.2017.08.025 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 31. Korfage IJ, Carreras G, Arnfeldt Christensen CM, et al. Advance care planning in patients with advanced cancer: a 6-country, cluster-randomised clinical trial. PLoS Med. 2020;17(11):e1003422. 10.1371/journal.pmed.1003422 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 32. Mack JW, Cronin A, Keating NL, et al. Associations between end-of-life discussion characteristics and care received near death: a prospective cohort study. J Clin Oncol. 2012;30(35):4387-4395. 10.1200/JCO.2012.43.6055 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 33. Sano M, Fushimi K.. Association of palliative care consultation with reducing inpatient chemotherapy use in elderly patients with cancer in Japan: analysis using a nationwide administrative database. Am J Hosp Palliat Care. 2017;34(7):685-691. 10.1177/1049909116650238 [DOI] [PubMed] [Google Scholar]
- 34. Mori M, Morita T.. End-of-life decision-making in Asia: a need for in-depth cultural consideration. Palliat Med. 2020:269216319896932. 10.1177/0269216319896932 [DOI] [PubMed]
- 35. Miyashita J, Shimizu S, Shiraishi R, et al. Culturally adapted consensus definition and action guideline: Japan’s advance care planning. J Pain Symptom Manage. 2022;64(6):602-613. 10.1016/j.jpainsymman.2022.09.005 [DOI] [PubMed] [Google Scholar]
- 36. Periyakoil VS, Gunten CFV, Arnold R, et al. Caught in a loop with advance care planning and advance directives: how to move forward?. J Palliat Med. 2022;25(3):355-360. 10.1089/jpm.2022.0016 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 37. Cincidda C, Pizzoli SFM, Ongaro G, Oliveri S, Pravettoni G.. Caregiving and shared decision making in breast and prostate cancer patients: a systematic review. Curr Oncol. 2023;30(1):803-823. 10.3390/curroncol30010061 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 38. Morrison RS, Meier DE, Arnold RM.. What’s wrong with advance care planning?. JAMA. 2021;326(16):1575-1576. 10.1001/jama.2021.16430 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 39. Secunda K, Wirpsa MJ, Neely KJ, et al. Use and meaning of “goals of care” in the healthcare literature: a systematic review and qualitative discourse analysis. J Gen Intern Med. 2020;35(5):1559-1566. 10.1007/s11606-019-05446-0 [DOI] [PMC free article] [PubMed] [Google Scholar]
Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Data Availability Statement
The data underlying this article will be shared on reasonable request to the corresponding author.
