End-of-Life Discussions and Their Timing for Patients With Cardiovascular Diseases　― From the Perspective of Bereaved Family Members ―

Abstract

Background: Enhanced discussions regarding end-of-life (EOL) are crucial to provide appropriate care for seriously ill patients. However, the current status of EOL discussions, especially their timing and influencing factors, among patients with cardiovascular diseases (CVD) remains unknown.

Methods and Results: We conducted a cross-sectional questionnaire survey of bereaved family members of CVD patients who died at 10 tertiary care institutes in Japan. In all, 286 bereaved family members (38.2% male; median age 66.0 [interquartile range 58.0–73.0] years) of CVD patients were enrolled; of these, 200 (69.9%) reported that their families had had EOL discussions with physicians. The major topic discussed was resuscitation (79.0%), and 21.5% discussed the place of EOL care. Most discussions were held during hospitalization of the patient (88.2%). More than half (57.1%) the discussions were initiated less than 1 month before the patient died, and 22.6% of family members felt that this timing of EOL discussions was late. Bereaved family members’ perception of late EOL discussions was associated with the family members aggressive attitude towards life-prolonging treatment, less preparedness for bereavement, and less satisfaction with EOL care.

Conclusions: Approximately 70% of bereaved family members of CVD patients had EOL discussions, which were often held shortly before the patient died. Further research is required to establish an ideal approach to EOL discussions at an appropriate time, which may improve the quality of EOL care.

End-of-life (EOL) discussions are essential for providing appropriate care for terminally ill patients.^1–3 EOL discussions are associated with better quality of EOL care for terminally ill patients² and enable them to receive adequate care in accordance with their wishes.³ The need for enhanced EOL discussions with terminal cancer patients has been recognized through clinical guidelines of palliative care,^4,5 and many oncology patients consider EOL discussions to be an important part of EOL care.⁶

Recently, the importance of EOL discussions not only for cancer, but also for cardiovascular diseases has been recognized. Although the initiation of EOL discussions prior to the terminal phase is recognized as a high priority for quality improvement of EOL care,^1,7 there are no data on the current status of EOL discussions, especially their timing, as well as the factors influencing the initiation of these discussions for cardiovascular diseases. Furthermore, whether delayed timing of EOL discussions is associated with poorer quality of EOL care (e.g., family members’ dissatisfaction with EOL) remains unknown. Despite the importance of evaluating EOL discussions, interviewing terminally ill patients remains burdensome.⁸ Therefore, studies have been conducted with bereaved family members who know the most about terminally ill patients.^9–14

The objectives of our study were to investigate: (1) the timing and content of EOL discussions among bereaved family members of patients with cardiovascular diseases; (2) the factors influencing the accomplishment of EOL discussions and their timing; and (3) the association of early EOL discussions with families’ satisfaction with EOL care.

Methods

Study Design and Participants

A cross-sectional anonymous questionnaire was administered to bereaved family members of patients hospitalized for cardiovascular diseases who had died in any of 10 tertiary care hospitals in Japan (6 universities and 4 tertiary medical institutions; Supplementary Table) between January 2014 and December 2016. A bereaved family member was defined as a family member who played a significant role in care, who had acted as a surrogate for a patient, and who was selected as the contact person in the patient’s medical record.

To be eligible for inclusion in this study, bereaved family members had to meet both the following criteria: (1) the patient had to have died in hospital; and (2) both the patient and bereaved family member had to be aged ≥20 years. Bereaved family members were excluded if: (1) the address of the bereaved family member was missing from hospital records; (2) the attending physician in charge considered that the family member was unsuitable for the survey (i.e., the family member was unable to reply to a self-reported questionnaire due to serious psychological distress or other conditions); or (3) the family member did not agree to participate in the survey.

Procedure

The questionnaires were prepared by the secretariat office (St. Luke’s International Hospital) and sent to the 10 participating hospitals. During the survey period, 907 patients died during emergency hospitalization due to cardiovascular diseases; 105 bereaved caregivers were excluded because they were deemed ineligible by the responsible attending physician and another 112 were excluded because their addresses were missing. After excluding these family members, questionnaires were mailed to 690 bereaved family members between July 2017 and August 2018, enclosing a ballpoint pen and letter explaining the aims and procedures of the survey. We asked the family members to complete the questionnaire and return it to the secretariat office within 2 weeks. When the questionnaires were returned to the office and the respondents had answered “yes” to the question “Are you willing to answer the questionnaire?”, they were considered to have consented to participate in the survey. If the family members did not want to participate in the survey, they were asked to indicate “No participation” in the questionnaire and return it to the office. If the questionnaire was not been returned within 1 month, a reminder was sent. Consequently, 405 family members returned the questionnaire, a response rate of 58.7%. Of the 295 family members who agreed to participate in the study, 9 were excluded because they did not answer the question as to whether they undertook EOL discussions with the physicians. Thus, 286 participants were finally included in the analysis (Supplementary Figure).

This study was approved by the Institutional Review Board (IRB) of St. Luke’s International Hospital in Tokyo (Approval no. 16-R156) and the IRBs all other individual facilities.

Questionnaire

The questionnaire was 15 pages long and contained 204 items, most of which were consistent with those used in the Japan HOspice and Palliative Care Evaluation (J-HOPE) study,^15–17 a survey of bereaved family members of cancer patients funded by the Japan Hospice Palliative Care Foundation. Due to differences in conditions between cancer and cardiovascular disease patients, some items were adjusted for the conditions of our patients (i.e., emergency admission for cardiovascular diseases). The questionnaire took approximately 30 min.

Based on existing literature,¹⁵ EOL discussions were defined as “discussions with physicians about the preferred place of care or resuscitation”, and we asked whether family members participated in these discussions. If family members participated in these discussions, they were asked more detailed questions about what was actually discussed: preferences about the place of EOL care (e.g., palliative care unit or home), resuscitation (e.g., respirator or cardiac massage), and other topics (e.g., the use of specialist palliative care services, transfer to facilities other than palliative care unit or home). In terms of EOL discussion with physicians, we further asked who mainly took part in the discussions (cardiologist, primary care physician, palliative care physician, or others), when the discussion primarily took place (e.g., during outpatient visits, hospitalization, or home visit service), and the timing of initiating the discussion (≥3, 1–3, or <1 month before the patient died). We also investigated the perception of the timing of the initiation of EOL discussions by physicians (early, appropriate, a little bit late, or late) and the adequacy of EOL discussions (sufficient, somewhat sufficient, somewhat insufficient, or insufficient).¹⁵ Based on the perception of the timing of the initiation of EOL discussions by physicians, patients were divided into 2 groups: late (a little bit late, or late) and early/appropriate (early, appropriate). Overall satisfaction with EOL care was evaluated with the question: “Overall, were you satisfied with the care in the hospital?” The question was rated using a 6-point Likert scale from 1 (=absolutely dissatisfied) to 6 (=absolutely satisfied), and scores ≥4 were considered to indicate that family members were “satisfied with the overall EOL care”. We also asked whether family members participated in EOL discussions with the patients.

Patient details (age, sex, and cause of admission) were collected from the medical databases of each institution. The participating family members were asked for details regarding their age, sex, relationship with the patient, educational background, physical and psychological status during the caregiving period (good, average, bad, very bad), and time spent with the patient during the week before the patient died. We also asked participants about their preparedness for the death of the patient (“How prepared were you for the patient’s death?”; answers: not at all, not enough, somewhat prepared, or prepared). The perception of burden related to EOL care was assessed with a 4-item domain based on the Caregiving Consequence Inventory using a 7-point Likert scale from 1 (=absolutely disagree) to 7 (=absolutely agree). This measurement has been validated and developed to evaluate the consequences of caregiving among bereaved family members,¹⁸ and scores ≥5 were categorized as indicating a care burden. The questionnaire also included items about patients’ and family members’ preferences for EOL care (e.g., treatment preference [cardiovascular treatment for life extension, values comfort over life extension, no preference, not sure], prognostic information [want to know life expectancy, want to know disease status excluding prognosis, no need for detailed information, not sure], and place of EOL care [hospital, home, other]), as described previously.^15,19

Statistical Analysis

Continuous variables are presented as the median with interquartile range (IQR). Categorical variables are presented as numbers and percentages. The Chi-squared test and Mann-Whitney U test were used to identify factors correlated with EOL discussions and their timing, comparing continuous and categorical variables, respectively. Statistical significance was set at two-tailed P value <0.05. All statistical analyses were performed using SPSS version 26 (IBM Corp., Armonk, NY, USA).

Results

Demographic Characteristics of Patients and Bereaved Family Members

We analyzed 286 bereaved family members of patients with cardiovascular diseases. The participants’ characteristics are presented in Table 1. The median age of the patients was 82 years (IQR 73–88 years), and 155 (54.2%) were male. The reasons for hospitalization were heart failure (57.3%), myocardial infarction (11.5%), arrhythmia (3.1%), and cardiopulmonary arrest (5.2%). The participating family members were predominantly female (61.8%; median age 66 years [IQR 58–73 years]), with 35.4% being spouses and 48.2% being children of the patients.

Table 1.

Demographic Characteristics of Patients and Bereaved Family Members and Treatment Preferences According to EOL Discussions

	All (n=286)	EOL discussions		P value
		Yes (n=200)	No (n=86)
Patients
Age (years)	82 [73–88]	83 [73–88]	80 [73–88]	0.368
Male sex	155 (54.2)	108 (54.0)	47 (54.7)	0.919
Cause of admission				0.122
Heart failure	164 (57.3)	120 (60.0)	44 (51.2)
Myocardial infarction	33 (11.5)	23 (11.5)	10 (11.6)
Cardiopulmonary arrest	15 (5.2)	6 (3.0)	9 (10.5)
Arrhythmias	9 (3.1)	6 (3.0)	3 (3.5)
Other	65 (22.7)	45 (22.5)	20 (23.3)
Duration of CVD treatment <1 year	72 (25.6)	49 (24.7)	23 (27.7)	0.604
Bereaved family members
Age (years)	66 [58–73]	65 [55–70]	70 [62–78]	<0.001
Male sex	108 (38.2)	75 (37.9)	33 (38.8)	0.881
Relationship with patient				0.031
Spouse	99 (35.4)	61 (31.3)	38 (44.7)
Child	135 (48.2)	104 (53.3)	31 (36.5)
Other	46 (16.4)	30 (15.4)	16 (18.8)
Education: junior and technical college or higher	141 (50.2)	101 (51.5)	40 (47.1)	0.491
Physical health during caregiving: bad or very bad	66 (23.2)	46 (23.2)	20 (23.3)	0.997
Psychological health during caregiving: bad or very bad	125 (44.3)	90 (45.7)	35 (41.2)	0.484
Time spent with the patient during the week before death: >3 days	208 (73.2)	146 (73.7)	62 (72.1)	0.774
Presence of other caregivers	182 (64.5)	125 (63.5)	57 (67.1)	0.561
Prepared or somewhat prepared for patient’s death	203 (71.0)	150 (75.0)	53 (61.6)	0.022
Burden on family members
Time and changes in schedule	61 (24.8)	45 (25.3)	16 (23.5)	0.776
Physiological burden	88 (35.6)	65 (36.3)	23 (33.8)	0.715
Psychological burden	113 (45.7)	89 (49.7)	24 (35.3)	0.042
Financial burden	58 (23.5)	38 (21.2)	20 (29.4)	0.175
Preferences of patients and family members
Preference for life-extending treatments
Patient	36 (12.7)	21 (10.6)	15 (17.9)	0.092
Family member	35 (12.5)	17 (8.6)	18 (21.7)	0.003
Need for information: wanted to know life expectancy
Patient	66 (23.7)	45 (22.7)	21 (25.9)	0.568
Family member	179 (64.6)	134 (68.0)	45 (56.3)	0.063
Preferred place of care and place of death: home
Patient	136 (48.7)	98 (49.7)	38 (46.3)	0.604
Family member	98 (34.8)	62 (31.5)	36 (42.4)	0.078
Family members’ satisfaction with overall EOL care	214 (76.4)	151 (76.3)	63 (76.8)	0.919

Unless indicated otherwise, data are given as n (%) or median [interquartile range]. CVD, cardiovascular disease; EOL, end-of-life.

Frequency and Details of EOL Discussions

Of the 286 bereaved family members, 200 (69.9%) participated in EOL discussions with physicians during the course of the patient’s disease. The details of EOL discussions with physicians from the perspective of bereaved family members are described in Figures 1 and 2. Among 200 family members who had EOL discussions with physicians, resuscitation (e.g., respirator or cardiac massage) was discussed by 79.0% of family members, the place of EOL care (e.g., palliative care unit or home) was discussed by 21.5%, and other topics (e.g., the use of specialist palliative care services or transfer to facilities other than the palliative care unit or home) was discussed by 17.5% (Figure 1). EOL discussions were provided by cardiologists in approximately three-quarters of cases (Figure 2A), and 88.2% of the discussions were mainly provided during the patient’s hospitalization (Figure 2B). More than half the discussions were initiated within 1 month of the death of the patient (Figure 2C); 70.5% of bereaved caregivers felt that the timing of initiating EOL discussions was appropriate, whereas 22.6% considered the timing to be a little bit late or late (Figure 2D). Among the 200 family members who participated in the discussions, 78.8% reported that the discussions were sufficient or somewhat sufficient (Figure 2E).

Figure 1.

Topics discussed in end-of-life (EOL) discussions.

Figure 2.

Details of end-of-life (EOL) discussions with physicians from the perspective of bereaved family members.

Among the overall cohort, 47.7% (n=126) of family members participated in EOL discussions only with physicians, 8.0% (n=21) had EOL discussions only with patients, 27.3% (n=72) had discussions with both physicians and patients, 17.0% (n=45) did not have discussions, and 22 did not answer whether they had discussions with patients (Figure 3).

Figure 3.

Frequency of end-of-life (EOL) discussions by bereaved family members with physicians alone, the patient alone, and both physicians and patients.

Differences in Characteristics of Patients and Bereaved Family Members With and Without EOL Discussions

Table 1 presents the demographic characteristics and treatment preferences of patients and bereaved family members in groups with and without EOL discussions with physicians. There were no significant differences in baseline demographic characteristics (e.g., age, sex, cause of admission, and duration of cardiovascular disease treatment) among the deceased patients between the 2 groups. Bereaved family members who had EOL discussions were significantly younger, more likely to be the children of patients, and were prepared for the death of the patient. Bereaved family members who did not participate in EOL discussions had less psychological burden and a more positive preference towards life-prolonging treatments. There were no significant differences in the families’ satisfaction with overall EOL care between the groups with and without EOL discussions.

Factors Influencing Families’ Perceptions of Late Initiation of EOL Discussions

The 200 family members who had EOL discussions with physicians were divided into 2 groups according to their perception of the timing of the initiation of EOL discussions: late (a little bit late or late) and early/appropriate groups (early or appropriate). Patients’ and bereaved family members’ demographic characteristics and preferences for EOL care for each of these 2 groups are summarized in Table 2. Family members in the late group were more likely to be a spouse and less prepared for the death of the patient. In the late group, both patients and family members preferred aggressive treatment. The patients’ and family members’ desire for prognostic information did not differ between the late and early/appropriate groups. The proportion of family members who were satisfied with the overall EOL care of patients was higher in the early/appropriate group than in the late group.

Table 2.

Demographic Characteristics of Patients and Bereaved Family Members and Preference for EOL Care According to Timing of Initial EOL Discussion

	Timing of initial EOL discussion		P value
	Early/appropriate (n=147)	Late (n=43)
Patients
Age (years)	83 [75–89]	82 [71–87]	0.127
Male sex	79 (53.7)	24 (55.8)	0.810
Cause of admission			0.677
Heart failure	84 (57.1)	29 (67.4)
Myocardial infarction	19 (12.9)	4 (9.3)
Cardiopulmonary arrest	5 (3.4)	1 (2.3)
Arrhythmias	4 (2.7)	2 (4.7)
Other	35 (23.8)	7 (16.3)
Duration of CVD treatment <1 year	39 (26.5)	8 (19.5)	0.359
Bereaved family members
Age (years)	64 [56–70]	65 [55–73]	0.702
Male sex	54 (37.0)	19 (44.2)	0.394
Relationship with patient			0.008
Spouse	37 (25.7)	18 (42.9)
Child	78 (54.2)	23 (54.8)
Other	29 (20.1)	1 (2.4)
Education: junior and technical college or higher	76 (52.8)	19 (45.2)	0.390
Physical health during caregiving: bad or very bad	33 (22.6)	9 (20.9)	0.817
Psychological health during caregiving: bad or very bad	60 (41.4)	24 (55.8)	0.095
Time spent with the patient during the week before death: >3 days	109 (75.2)	29 (67.4)	0.314
Presence of other caregivers	90 (62.5)	30 (69.8)	0.383
Prepared or somewhat prepared for patient’s death	117 (79.6)	27 (62.8)	0.024
Burden on family members
Time and changes in schedule	37 (28.0)	7 (18.9)	0.264
Physiological burden	49 (37.1)	12 (31.6)	0.530
Psychological burden	64 (48.5)	22 (57.9)	0.307
Financial burden	28 (21.2)	9 (23.7)	0.745
Preference of patients and family members
Preference for life-extending treatments
Patient	12 (8.2)	9 (20.9)	0.024
Family member	9 (6.2)	8 (18.6)	0.019
Need for information: wanted to know life expectancy
Patient	35 (24.1)	8 (18.6)	0.448
Family member	97 (67.4)	30 (69.8)	0.767
Preferred place of care and place of death: home
Patient	72 (50.0)	20 (46.5)	0.688
Family member	43 (29.9)	14 (32.5)	0.882
Family members’ satisfaction with overall EOL care	121 (82.3)	25 (58.1)	<0.001

Unless indicated otherwise, data are given as n (%) or median [interquartile range]. CVD, cardiovascular disease; EOL, end-of-life.

Differences in the details of EOL discussions according to family members’ perceptions of the timing of discussions are summarized in Table 3. There were no differences in the topic, provider, and setting of EOL discussions between the 2 groups. Approximately half the discussions were initiated within 1 month before the death of the patient in the early/appropriate group, but this increased to 79.1% in the late group.

Table 3.

Details of EOL Discussions According to the Timing of the Initial EOL Discussion

	Timing of initial EOL discussion		P value
	Early/appropriate (n=147)	Late (n=43)
Topic discussed in EOL discussions
Place of EOL care	30 (20.5)	11 (26.8)	0.390
Resuscitation	119 (81.5)	32 (78.0)	0.620
Other topics	30 (20.5)	5 (12.2)	0.226
Provider of EOL discussions			0.625
Cardiologist	113 (79.0)	31 (73.8)
Primary care physician	4 (2.8)	3 (7.1)
Palliative care physician	3 (2.1)	1 (2.4)
Other	23 (16.1)	7 (16.7)
Setting of EOL discussions			0.603
During outpatient visits	17 (11.9)	4 (9.3)
During hospitalization	125 (87.4)	38 (88.4)
During home visit service	1 (0.7)	1 (2.3)
Timing of initiation of EOL discussion			0.006
≥3 months before the patient’s death	40 (27.8)	5 (11.6)
1–3 months before the patient’s death	30 (20.8)	4 (9.3)
<1 month before the patient’s death	74 (51.4)	34 (79.1)
Perception of adequacy of EOL discussion			<0.001
Sufficient/somewhat sufficient	133 (90.5)	19 (44.2)
Insufficient/somewhat insufficient	14 (9.5)	24 (55.8)

Unless indicated otherwise, values are given as n (%). EOL, end-of-life.

Discussion

This study is the first to examine the details of EOL discussions among bereaved family members of patients with cardiovascular diseases. We found that: (1) approximately 70% of patients’ families had EOL discussions with physicians, and the most frequent topic was resuscitation; (2) only 35% of bereaved family members had EOL discussions with patients; (3) more than half the EOL discussions with physicians were initiated within 1 month of the death of the patient, with 23% of bereaved family members reporting a delay in the timing of these discussions; and (4) family members’ perception of late EOL discussions was associated with their positive preference towards life-prolonging treatment and less satisfaction with patients’ EOL care.

The strength of this study is that our survey used a questionnaire with items consistent with those used in J-HOPE,^15–17 a Japanese survey of bereaved family members of patients with cancer, allowing for an accurate comparison of the details of EOL discussions in the fields of cardiovascular disease and cancer in Japan. In the present study, the frequency of EOL discussions between physicians and family members for cardiovascular diseases was approximately 70%, which is lower than that for cancer (80.6% in the J-HOPE study¹⁵). Furthermore, the proportion of EOL discussions initiated <1 month before the patient died was higher for cardiovascular diseases than for cancers (57.1% in our cohort vs. 23.9% in the J-HOPE study¹⁵). These findings suggest that EOL discussions regarding cardiovascular diseases may be suboptimal in terms of frequency and timing compared with those for cancers. Although elucidating the reasons for this difference is beyond the scope of the present study, it may be because the clinical course of acute cardiovascular diseases is more rapid than that of cancers. Even in the case of chronic cardiovascular diseases (e.g., acute decompensation of chronic heart failure), it is difficult to predict prognosis because of the illness trajectory (repeated exacerbations and remissions leading to death),^7,20 which may make it difficult to initiate EOL discussions in a timely manner. Owing to this heterogeneity in illness trajectory of various cardiovascular diseases, further studies focusing on a homogeneous group of patients with cardiovascular disease (e.g., those with a limited prognosis) is required.

The main element of EOL discussions in our survey was whether the patient was resuscitated, with the place of death and the use of palliative care services discussed less frequently, which differs from the findings of a cancer survey study, in which the most frequently discussed topic was place of death.¹⁵ There are several possible explanations for this discrepancy between cardiovascular diseases and cancer. First, for patients with cardiovascular disease, the use or non-use of life-sustaining treatments is often an imminent issue because of the relatively rapid course of the disease and must be decided more quickly than other matters. Second, because patients hospitalized for cardiovascular diseases often require intensive care treatment (e.g., hemodynamic stabilization, management of ischemia, and/or arrhythmias), there are fewer options for selecting a place of care other than inpatient facilities. Third, the discrepancy may be due to a lack of awareness of palliative care in the field of cardiovascular diseases.²¹ Elucidating the elements of EOL discussions desired by patients and their family members is important in the future.

In the present study, no or late discussions of EOL were associated with the families’ or patients’ desire for aggressive life-prolonging treatments during EOL care, which is consistent with previous results in other fields.^2,22–24 Among 1,231 patients with advanced lung or colorectal cancer, EOL discussions were prospectively associated with less aggressive treatment (i.e., acute hospital-based care and chemotherapy) and a greater use of hospice care at the EOL.²² In a national, multicenter survey, hospital-based clinicians perceived patient- and family member-related factors (e.g., family members’ or patients’ difficulty understanding the limitations and complications of life-sustaining treatments, family members’ or patients’ difficulty accepting a poor prognosis) as the most important barriers to EOL discussions in seriously ill hospitalized patients.⁸ Notably, in our survey, the completion of EOL discussions was not associated with the cause of admission or duration of treatment. These previous findings and the findings of the present study suggest that patient or family attitudes or preferences towards life-prolonging treatment may deter clinicians from engaging in EOL discussions.

Despite the guideline recommendation of advance care planning to reflect patients’ individual wishes in EOL care,^25,26 it is common in Japan that physicians do not disclose details of illness to terminally ill patients,^27–29 and families often request physicians not to disclose prognoses to avoid patient distress, resulting in a lack of communication.²⁹ In this study, approximately 70% of family members of patients participated in EOL discussions with physicians, whereas only 35% participated in EOL discussions with patients. It is plausible that family members need to be involved in general treatment decisions (e.g., location of care and preferences for EOL care); patients’ wishes could not be fully reflected in EOL care. Therefore, the facilitation of EOL discussions not only with physicians, but also with patients may be necessary to achieve care that is in accordance with patients’ goals.

Our study has several clinical implications. First, medical providers should identify cardiovascular disease patients who are seriously ill and their family members who have a positive preference towards aggressive treatment, but do not have EOL discussions with their treating physicians. Because these patients are at a high risk of less satisfaction with EOL care from the perspective of bereaved family members, an inpatient multidisciplinary team needs to maximize EOL care resources. Second, our study could be considered hypothesis generating; late EOL discussions were associated with lower quality of EOL care (i.e., family members’ less satisfied with overall EOL care). Further investigations with clinical trials should be conducted to elucidate whether a cause–effect relationship between EOL discussions and family members’ satisfaction with EOL care is observed, and how early EOL discussions need to be initiated.

This study has several limitations. First, the number of bereaved family members was small, and the statistical power of the study may have been inadequate to detect any negative outcomes. Second, the participants were limited to the bereaved family members who returned the questionnaire surveys, and those who were considered unable to complete the questionnaire due to severe mental distress or other reasons were excluded; both these criteria could cause selection bias, a common limitation of surveys of bereaved family member. Third, this survey was performed in Japanese tertiary care centers; therefore, our findings may not be applicable to other regions and types of institutes. Fourth, cause–effect relationships among the factors influencing the accomplishment of EOL discussions cannot be evaluated, as discussed previously. Fifth, we only assessed EOL discussions using the current form of our questionnaire. Further studies evaluating comprehensive aspects of EOL discussions (e.g., assessment of the values and preferences of patients and their family members, confirmation that the medical condition and prognosis was understood, asking what is most important for the patient, trade-offs) will be required. Sixth, the J-HOPE study, which was used for comparison, enrolled patients who were cared for by specialist palliative care services, limiting the generalizability of its findings to patients with cancer in other settings.

In conclusion, among the patients who died of cardiovascular diseases, approximately 70% of bereaved family members had EOL discussions with physicians. However, more than half the EOL discussions were initiated 1 month before the death of the patient, and 22.6% of bereaved family members perceived the timing of the EOL discussions to be late. Late EOL discussions were associated with patients’ and family members’ positive preferences towards life-prolonging treatments, as well as less satisfaction with EOL care. To improve EOL care for patients with cardiovascular disease, we need to establish an ideal approach for EOL communication in the trajectory of cardiovascular diseases.

Acknowledgments

The authors are grateful to Yumi Osaki, Yuki Shinozaki, and Hidenori Yaku for sending out the questionnaires and for their efforts in summarizing the results. The authors also thank Toshiyuki Takahashi for supervising the research project.

Sources of Funding

This research was supported by the “Practical Research Project for Lifestyle-related Diseases including Cardiovascular Diseases and Diabetes Mellitus” from the Japan Agency for Medical Research and Development, AMED (18ek0210072 h0003) and, a Grant-in-Aid for Scientific Research (JPSS KAKENHI, 17K09526, 20K08408), and research grant from the Pfizer Health Research Foundation.

Disclosures

The authors report no conflicts of interest.

IRB Information

This study was approved by the Institutional Review Board (IRBs) of Saint Luke’s International Hospital in Tokyo (Approval no. 16-R156) and by IRBs in all other participating facilities.

Supplementary Files

Please find supplementary file(s);

https://doi.org/10.1253/circj.CJ-23-0507

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