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Meaningful Communication Before Death, but Not Present at the Time of Death Itself, Is Associated With Better Outcomes on Measures of Depression and Complicated Grief Among Bereaved Family Members of Cancer Patients
Address correspondence to: Hiroyuki Otani, MD, Department of Palliative Care Team, and Palliative and Supportive Care, National Kyushu Cancer Center, 3-1-1 Notame, Mitami-ku, Fukuoka, Japan.
Few studies have explored the clinical significance of the family's presence or absence at the moment of a patient's death and meaningful communication (saying “goodbye”) in terms of post-bereavement outcomes.
Objectives
To explore the potential association between the family's depression/complicated grief and their presence at the moment of a patient's death and the patient's communication with the family.
Methods
A nationwide questionnaire survey was conducted on 965 family members of cancer patients who had died at palliative care units.
Results
More than 90% of family members wished to have been present at the moment of death (agree: 40%, n = 217; strongly agree: 51%, n = 280); 79% (n = 393) thereof were present. Families' presence at death was not significantly associated with the occurrence of depression and complicated grief, but the dying patient's ability to say “goodbye” to the family beforehand was (depression: adjusted odds rate, 0.42; 95% CI, 0.26–0.69 adjusted P = 0.001; complicated grief: adjusted odds rate, 0.53; 95% CI, 0.29–0.94 adjusted P = 0.009).
Conclusion
Many families wished to be present at the moment of the patient's death; however, meaningful communication (saying “goodbye”) between the patient and family members, and not their presence or absence itself, was associated with better outcomes on measures of depression or complicated grief. Health care professionals could consider promoting both mutual communication (relating to preparation for death) between family members and patients before imminent death, as well as the family's presence at the moment of death.
Empirical studies indicate that, after a patient's death, 25%–45% of bereaved family members experience depression and 7%–20% experience complicated grief.
Health care professionals should make maximal efforts to avoid worsening bereaved families' depression and complicated grief through their actions. Risk factors for complicated grief include the following: social background (economic condition, sex, and age), relationship and closeness with the patient, social support, and previous experiences of loss. The environmental setting before and after the patient's death is also one of the risk factors for complicated grief and depression, and can be modified by health care professionals. For example, health care professionals often ask family members if they would like to spend time with the patient until the patient's death as a part of daily practice, as they believe that it is important for family members to be present at the moment of death. In previous studies, many families explicitly required notification of a patient's impending death, so they could prepare and also call other family members who might wish to be present. If death occurs suddenly, unexpectedly, or in their absence, family members may experience guilt, anger, or regret.
On the other hand, meaningful communication (saying “goodbye”) between the family and the patient before death has been reported to be a component of good death.
Nonetheless, to date, few studies have explored the clinical significance of the family's presence or absence at the moment of a patient's death and meaningful communication (saying “goodbye”) in terms of post-bereavement outcomes.
The primary aim of this study was to explore the potential associations between psychological outcomes on measures of depression and complicated grief on the one hand, and presence at the moment of death and meaningful communication between the patient and bereaved family members on the other.
Methods
Participants and Methods
This was a nationwide survey (the Japan Hospice and Palliative Care Evaluation Study: J-HOPE3) of bereaved family members of cancer patients, aimed at evaluating the quality of end-of-life care across Japan.
A multicenter questionnaire survey targeted bereaved family members of cancer patients who had died at palliative care units. We mailed questionnaires to bereaved families in May 2014 and again in June 2014 to non-responding families. Completion and return of the questionnaire was regarded as consent to participate in this study, and families who did not want to participate were asked to return the questionnaire with “no reply.” Ethical and scientific validity were confirmed by the institutional review boards of all participating institutions.
Setting and Participants
Primarily responsible physicians identified potential participants with the following inclusion criteria: 1) bereaved family members of an adult cancer patient (one family member was selected for each patient), 2) aged 20 years or older, 3) capable of completing a self-reported questionnaire, and 4) aware of the diagnosis of malignancy. Exclusion criteria were as follows: 1) inability to complete the questionnaire (dementia, cognitive failure, psychiatric illness, language difficulty, or visual loss), 2) treatment-associated death or death in intensive care units, 3) unavailability of family member, 4) the patient having received palliative care services in less than three days, and 5) no recognition of serious psychological distress by the primary physician. The final criterion, as in our previous studies,
was adopted on the assumption that primary physicians could identify families who might experience a serious psychological impact, given the aim of the present study; no formal criteria or psychiatric screening were applied. According to our previous research,
and discussion among the authors. The face validity of the questionnaire was confirmed through a pilot test with five bereaved family members and eight physicians.
Primary End Points
We measured depression and complicated grief among the bereaved family members. We used the Patient Health Questionnaire-9 (PHQ-9) to assess depression. The reliability and validity of the Japanese version of the scale were confirmed, and we classified a score of 10 as indicative of clinical depression.
used the questionnaire with the general Japanese population, including bereaved individuals who had lost a loved one to cancer. Responses were rated as follows: 0 = not at all, 1 = somewhat, and 2 = a lot. A total score of 8 or higher indicates that the respondent is likely to develop complicated grief, scores of 5–7 indicate sub-threshold complicated grief, and scores of <5 indicate that the respondent is unlikely to develop complicated grief.
Primary Predictors
The Family's Wish to be Present at the Moment of the Patient's Death and Their Actual Presence
We asked whether the family was actually present at the moment of the patient's death, and the family-perceived degree of the wish to be present at the moment of death was rated on a five-point Likert-type scale from 1 = strongly agree to 5 = disagree.
Meaningful Communication (Saying “Goodbye”) Between the Family and the Patient Before Death
We asked about the dying patient's communication with the family, using the Good Death Inventory.
We asked the family-perceived degree to which the patient was able to tell the family what he or she wanted (say “goodbye” to the family), which was rated on a seven-point Likert-type scale from 7 = strongly agree to 1 = disagree.
Other Covariates
As covariates, we asked family members to report the following demographic data: patient age, sex, and tumor sites; family member's age, sex, and relationship with the patient; duration of hospice stays; and the availability of another person who could stay with the patient. Furthermore, we asked family members who were actually present at the moment of the patient's death about the family-perceived level of the following, on a five-point Likert-type scale from 1 = strongly agree to 5 = disagree: “I was relieved not to make the patient feel lonely and alone at the final moment,” “I was able to prepare by seeing and noticing changes in the patient's body,” “I was able to say words of appreciation and farewell to the patient for the last time,” and “I had the burdensome feeling that I must be on time for the death of the patient.” We also asked family members who were not actually present at the moment of the patient's death about the family-perceived level of the following, on a five-point Likert-type scale from 1 = strongly agree to 5 = disagree: “I regret and blame myself for not being present at the moment of the patient's death.”
Statistical Analyses
We calculated the proportion of family members who were actually present at the moment of the patient's death, and determined the relationship between the actual presence and the family-perceived level of the wish (strongly wish or wish, unsure, and do not wish) to be present. We examined the psychological outcomes of the family associated with their presence at the moment of the patient's death and whether the dying patient could communicate what he or she wished to say (“goodbye” to the family) with the family before death. The psychological outcomes of family's presence were assessed by comparing the prevalence of depression (a PHQ-9 score of 10 or more) and complicated grief (a BGQ score of 8 or more). Comparisons were performed using Student t-test, and adjusted for the following potential confounding factors through regression analyses: patient's age, sex, and tumor sites; family member's age, sex, and relationship with the patient; periods spent by family members with the patients during the last week; and the availability of another person who could stay with the patient. A P-value of 0.050 was regarded as significant. All analyses were performed using the Statistical Package for the Social Sciences (ver. 11.0).
Results
Of the 965 questionnaires sent to bereaved family members, 727 were returned (response rate 75.3%). Of the 727 respondents, 69 declined participation in the study. For the present study, 114 responses were subsequently excluded because of missing data on the primary end-points. Thus, we analyzed a total of 544 responses (82.6% of the obtained data). Background characteristics are summarized in Table 1.
Table 1Respondents' Characteristics (n = 544)
Characteristic
n
%
Patients
Age (average, SD), yrs
73.5
11.6
Sex
Male
287
52.6
Female
253
46.3
Original cancer site
Lung
132
24.2
Pancreas
49
9.0
Gall bladder
20
3.7
Liver
19
3.5
Colon and rectum
70
12.9
Esophagus and stomach
70
12.8
Uterus and ovary
37
6.8
Brain, head, and neck
33
6.1
Kidney and bladder
25
4.6
Breast
22
4
Prostate
19
3.5
Blood and lymphoma
12
2.2
Others
36
6.6
Duration of hospice stays
Less than seven days
85
15.6
Seven days or more
459
84.4
Family caregiver
Age (average, SD), yrs
60.0
12.3
Sex
Male
193
35.3
Female
341
62.5
Relationship with patient
Spouse
229
41.9
Child
223
40.8
Sibling
29
5.3
Parent
11
2.0
Others
44
8.1
Someone else who can care for the patient
Yes
412
75.5
No
124
22.7
Some data do not add up to 100% because of missing values.
The Proportion of Family Members Who Wished to be Present at the Moment of the Patient's Death, and of Those Who Were Actually Present or Absent
More than 90% of family members wished to be present at the moment of the patient's death (agree: 40%, n = 217; strongly agree: 51%; n = 280). Among family members who wished to be present at the moment of the patient's death, 79% (n = 393) were actually present (Fig. 1).
Fig. 1The actually present and the level of the family-perceived wish to be present at the moment of the patient's death.
Psychological Outcomes of the Family Associated with Their Presence at the Moment of the Patient's Death and Meaningful Communication (Saying “Goodbye”) Between the Family and the Patient Before Death
The prevalences of depression (a PHQ-9 score of 10 or more) and complicated grief (a BGQ score of 8 or more) were 18.3% (100/544) and 11.9% (65/544), respectively. Figure 2 shows the psychological outcomes of the family associated with their presence at the moment of the patient's death and whether the dying patient could say “goodbye” to the family. Not being present at the time of the patient's death was not significantly associated with depression and complicated grief, but the dying patient's ability to say “goodbye” to the family before death was.
Fig. 2Psychological impact on family of presence at the moment of the patient's death and meaningful communication (saying “goodbye”) between the patient and family members before death. a) The bereaved family members showed depression (indicated clinical depression [PHQ-9 ≥ 10]). b) The bereaved family members showed complicated grief (indicated clinical complicated grief [BGQ ≥ 8]). BGQ = Brief Grief Questionnaire; PHQ-9 = Patient Health Questionnaire-9.
Comparisons were conducted using Student t-test, and adjusted for the following potential confounding factors through regression analyses: patient's age, sex, and tumor sites; family member's age, sex, and relationship with the patient; duration of hospice stays; and the availability of another person to stay with the patient (Table 2). The dying patient's ability to say “goodbye” to the family before death was only significantly associated with depression and complicated grief (depression: adjusted odds rate, 0.42; 95% CI, 0.26–0.69 adjusted P = 0.001; complicated grief: adjusted odds rate, 0.53; 95% CI, 0.29–0.94 adjusted P = 0.009). The family's presence or absence at the moment of the patient's death was not significantly associated with depression and complicated grief. In addition, even when analysis was limited to families who wished to be present beside the patient at the moment of death, family's presence or absence at the moment of death was not significantly associated with depression and complicated grief. Among potential confounding factors, relationship with the patient was significantly associated with depression and complicated grief, and duration of hospice stays was significantly associated with complicated grief.
Table 2Relationship Between Depression and Grief
Variables
Depression (PHQ ≧ 10), n = 100
Complicated Grief (BGQ ≧ 8), n = 65
n
%
95% CI
P
Adj P
n
%
95% CI
P
Adj P
Patients
Age
0.007
0.427
0.001
0.054
Less than 75 yrs
60
22.7
17.6–27.8
44
16.7
12.2–21.2
75 yrs or more
40
14.3
10.2–18.4
21
7.5
4.4–10.6
Sex
0.034
0.374
0.755
0.369
Male
64
22.3
17.5–27.1
35
12.2
8.4–16.0
Female
36
14.2
9.9–18.5
30
11.9
7.9–15.9
Original cancer site
0.426
0.423
0.005
0.068
Lung
22
16.7
9
6.8
Stomach
11
19.0
5
8.6
Colon
10
20.0
9
18.0
Rectum
3
15.0
1
5.0
Liver
3
15.8
0
0.0
Gall bladder
3
15.0
5
25.0
Pancreas
11
22.4
9
18.4
Esophagus
1
8.3
1
8.3
Breast
1
4.5
1
4.5
Prostate
6
31.6
2
10.5
Kidney
1
8.3
1
8.3
Bladder
2
15.4
1
7.7
Head and neck
3
12.5
3
12.5
Uterus
2
10.5
2
10.5
Ovary
3
16.7
0
0.0
Blood
0
0.0
0
0.0
Lymphoma
2
20.0
4
40.0
Soft tissue
1
25.0
0
0.0
Brain
4
44.4
3
33.3
Other
11
34.4
9
28.1
Duration of hospice stays
0.072
0.165
0.014
0.046
Less than seven days
21
24.7
15.5–33.9
17
20.0
11.5–28.5
Seven days and more
79
17.2
13.7–20.7
48
10.5
7.7–13.3
Family caregiver
Age
0.015
0.844
0.001
0.024
Less than 75 yrs
76
16.2
12.9–19.5
45
9.6
6.9–12.3
75 yrs or more
19
28.4
17.6–39.2
17
25.4
15.0–35.8
Sex
0.168
0.157
0.648
0.418
Male
32
16.6
11.4–21.8
21
10.9
6.5–15.3
Female
64
18.8
14.7–22.9
42
12.3
8.8–15.8
Relationship to patient
0.000
0.023
0.000
0.005
Spouse
62
27.1
21.3–32.9
44
19.2
14.1–24.3
Others
33
10.7
7.2–14.2
18
5.9
3.3–8.5
Someone else who can care the patient
0.126
0.225
0.147
0.161
Yes
69
16.7
13.1–20.3
43
10.4
7.5–13.3
No
28
22.6
15.2–30.0
21
16.9
10.3–23.5
Preference
0.008
0.265
0.114
0.827
Strongly want
65
23.2
18.3–28.1
40
14.3
10.2–18.4
Want
31
14.3
9.6–19.0
23
10.6
6.5–14.7
Uncertain/Not want
4
8.7
0.6–16.8
2
4.3
−1.6–10.2
Preference and presence
0.093
0.566
0.088
0.424
Want and present/Not want
86
19.6
15.9–23.3
57
13.0
9.9–16.1
Want and not present
14
13.5
6.9–20.1
8
7.7
2.6–12.8
Say goodbye
0.000
0.002
0.004
0.009
Yes
58
14.5
11.0–18.0
38
9.5
6.6–12.4
No
42
29.0
21.6–36.4
27
18.6
12.3–24.9
The bereaved family members showed clinical depression (PHQ-9 ≥ 10) and clinical complicated grief (BGQ ≥ 8). BGQ = Brief Grief Questionnaire. PHQ-9 = Patient Health Questionnaire-9
Experiences of Family Members Who Were Present or Absent at the Moment of the Patient's Death
Table 3 shows the percentage of family members who responded, “agree” and “strongly agree” regarding the experiences of family members who were present or absent at the end of the patient's life. Of family members who were present at the moment of the patient's death, 370 (90%; 87%–93% [95% CI]) reported, “I was relieved not to make the patient feel lonely and alone at the final moment.” On the other hand, of family members who were not present at the moment of the patient's death, 36 (27%; 20%–35% [95% CI]) reported, “I regret and blame myself for not being present at the moment of the patient's death.”
Table 3Bereaved Families' Experiences at the Moment of the Patient's Death
Items
n
%
95% CI
Family members who were actually present at the moment of the patient's death (n = 411)
I was relieved not to make the patient feel lonely and alone at the final moment.
370
90.0
87.1–92.9
I was able to prepare by seeing and realizing changes in the patient's body.
320
77.9
73.9–81.9
I was able to say words of appreciation and farewell to the patient for the last time.
291
70.8
66.4–75.2
I had a burdensome feeling that I must be on time for the death of the patient.
57
13.9
10.6–17.2
Family members who were actually not present at the moment of the patient's death (n = 133)
I regret and blame myself for not being present at the moment of the patient's death.
This is, to our knowledge, the first large-scale study on bereaved family members to systemically investigate the potential association between psychological outcomes of the family and their presence at the moment of the patient's death and patients' meaningful communication (saying “goodbye”) between the family and the patient before death. The strengths of this study were its large sample, which was drawn from a nationwide population of inpatients at hospices. Two important findings became obvious. First, many families wished to have been present at the moment of patients' death. Second, absence at the moment of the patient's death itself was not significantly associated with family grief, but meaningful communication (say “goodbye”) between the patient and family members before death was.
More than 90% of family members wished to have been present at the moment of the patient's death; more than half strongly wished for this. This result suggests that it was important to ask whether family members wished to have been present at the moment of patients' death when death was imminent. This study further revealed that 90% of family members who were present at the moment of the patient's death reported, “I was relieved not to make the patient feel lonely and alone at the final moment,” and 27% of those who were not present at the moment of the patient's death reported, “I regret and blame myself for not being present at the moment of the patient's death.” Unlike in the present study, in a French study, only 24% of patients had loved ones present at the time of death.
Furthermore, in this study, not being present at the time of a patient's death was not significantly associated with depression and complicated grief, but the dying patient's ability to say “goodbye” to the family before death was. This suggests that, although many family members wish to be present at the moment of the patient's death, presence itself was not associated with psychological morbidity. It is important for health care professionals to consider promoting mutual communication (communication relating to preparation for death) between family members and patients before the patient's death, as well as family members' presence.
What questions do family caregivers want to discuss with health care providers in order to prepare for the death of a loved one? An ethnographic study of caregivers of patients at end of life.
This study has several limitations. Firstly, because of its retrospective nature and because we chose the interval from patient death to questionnaire completion to be within six to 12 months, similar to our previous study,
there may be recall bias. Secondly, all patients received specialized palliative care and the findings of the present study may not be automatically generalizable to other situations. Thirdly, the present study had a moderate response rate, and the opinions of family members who did not respond are not known. Fourthly, we could not eliminate the potential influence of unmeasured factors such as history of psychiatric comorbidity associated with family's depression and complicated grief. Finally, this study was conducted in Japan; the results are likely to have been influenced by factors relating to the Japanese culture and, therefore, may not be applicable to other countries.
In conclusion, many families wished to be present at the moment of the patient's death. Moreover, meaningful communication (saying “goodbye”) between a patient and family members before the former's death, but not presence or absence at the moment of death, was associated with better outcomes on measures of depression or complicated grief. It is important for health care professionals to consider promoting both mutual communication (communication relating to preparation for death) between family members and patients before patients' death, as well as family members' presence at the time of death.
Acknowledgments
The authors appreciate all bereaved family members who responded the questionnaire.
This study was funded by the Japan Hospice Palliative Care Foundation in Japan, and also partially funded by the Japan Society for the Promotion of Science KAKENHI [grant number JP16KT0007]. The authors have no conflicts of interest to declare.
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Predictors of complicated grief: a systematic review of empirical studies.
What questions do family caregivers want to discuss with health care providers in order to prepare for the death of a loved one? An ethnographic study of caregivers of patients at end of life.
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