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Importance of end-of-life support to minimize caregiver's regret during bereavement of the elderly for better subsequent adaptation to bereavement
Archives of Gerontology and Geriatrics 50 (2010) 175–178
Contents lists available at ScienceDirect
Archives of Gerontology and Geriatrics journal homepage: www.elsevier.com/locate/archger
Importance of end-of-life support to minimize caregiver’s regret during bereavement of the elderly for better subsequent adaptation to bereavement Akiko Akiyama a, Kumiko Numata b, Hiroshi Mikami a,* a b
Department of Health Promotion Science, Division of Health Sciences, Osaka University Graduate School of Medicine, 1-7 Yamadaoka, Suita City, Osaka 565-0871, Japan Department of In-home Medical Care, Tokyo Women’s Medical University, 8-1 Kawada-cho, Shinjuku-ku, Tokyo 162-8666, Japan
A R T I C L E I N F O
A B S T R A C T
Article history: Received 28 April 2008 Received in revised form 6 March 2009 Accepted 16 March 2009 Available online 18 April 2009
This study examined whether the quality of end-of-life home medical care affected caregiver’s psychological recovery from bereavement. We analyzed survey responses from an anonymous selfadministered questionnaire from 147 bereaved family members (caregivers). Questionnaire content included information on the quality of end-of-life home medical care, feelings during bereavement and present feelings. Results showed that caregiver regret during bereavement was significantly associated with present feelings about loss regardless of the length of time after death of a loved one. Aspects of endof-life support that were statistically significant at minimizing regret during bereavement were: (1) fulfilled home medical care service system, (2) peaceful death of the patient, and (3) providing direct care by the caregiver. These findings suggest that end-of-life support to minimize caregiver regret during bereavement was crucial for better subsequent adaptation to bereavement. ß 2009 Elsevier Ireland Ltd. All rights reserved.
Keywords: End-of-life Regret Depression Bereavement Caregiver
1. Introduction End-of-life care at home has become an important policy issue in Japan due to the advent of an extremely aged society (Masuda and Iguchi, 2005). As demonstrated through revisions to long-term care insurance and to the medical treatment fees, reforms in home care have been promoted as a high national priority. End-of-life care at home is necessary to support caregivers and patients (Emanuel and Emanuel, 1998), because the caregiver’s existence is crucial for the continuation of care at home (Fukui et al., 2004; Aoun et al., 2007) and caregivers are under a constant physical and psychological heavy burden (Wright et al., 1993). In addition, the death of a loved one that is one of the most stressful events associated with an increased risk of morbidity and mortality of caregivers (Bonanno and Kaltman, 2001; Stroebe et al., 2006). Thus, it is important to consider the psychological and physical well-being of the caregiver not only in the process of home care but also after bereavement (Schulz et al., 2001). While previous studies reported the importance of caregiver’s satisfaction with health care as an indicator of the quality of care (Stewart et al., 1999), other feelings of the caregiver such as regret have not been explored (Sugden, 1985; Shiozaki et al., 2005). Furthermore, researchers rarely examined whether the quality of end-of-life home medical care prior to the death of the patient had
* Corresponding author. Tel.: +81 6 6879 2551; fax: +81 6 6879 2551. E-mail address: [email protected] (H. Mikami). 0167-4943/$ – see front matter ß 2009 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.archger.2009.03.006
a facilitating effect on the caregiver’s psychological recovery from bereavement (Grande et al., 2004). Therefore, the purpose of this study was to examine whether the quality of end-of-life home medical care had a facilitating effect on the caregiver’s psychological recovery from bereavement. 2. Methods 2.1. Sample The subjects were 326 bereaved family members of patients (caregivers) aged 40 years and older who died between August 2001 and July 2006 and were receiving home care provided by an institution specializing in home care. 2.2. The measurements Data were collected through mailed, anonymous, self-administered questionnaire between September and October 2006. Depression symptoms were assessed using the 15-item geriatric depression scale (15-GDS) (Brink et al., 1982). Subjects were asked 15 yes or no questions yielding a potential range of 0–15 (‘‘none’’ to ‘‘severe’’) (a = 0.83). Present feelings about loss were assessed by averaging five items: sadness, loneliness, melancholy, regret, remorse. Subjects responded on a 0–10 scale (‘‘never’’ to ‘‘always’’) (a = 0.83). Feelings during bereavement were assessed using two subscales: satisfaction, regret (Akiyama et al., 2007). Satisfaction was assessed by averaging three items: (a) the patient expressed
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Table 1 Characteristics of the subjects classified by the length of time after bereavement, mean S.D., or n (%). Variables
Total 147a
2–12 months
13–24 months
48a
25–60 months
40a
59a
Patients Age, years Females Cause (cancer) Death (home)
80.6 11.9 74 (50.3) 81 (55.1) 108 (73.5
82.8 12.3 21 (43.8) 23 (47.9) 38 (80.9)
78.9 11.4 19 (45.0) 24 (60.0) 30 (76.9)
79.9 11.9 35 (59.3) 34 (57.6) 40 (67.8)
Caregivers Age, years Females
62.1 12.2 110 (74.8)
61.6 12.1 37 (77.1)
61.7 12.9 31 (77.5)
62.8 12.0 42 (72.4)
17 (35.4) 22 (45.8) 6 (12.5)
18 (45.0) 16 (40.0) 5 (12.5)
19 (32.2) 19 (32.2) 16 (27.1)
Relationship to the patient Spouse Child Child-in-law
54 (36.7) 57 (38.8) 27 (18.4)
Feeling during bereavement (1–5) Satisfaction Regret
4.1 0.9 3.9 0.9
4.1 0.8 4.0 0.9
4.0 1.0 3.9 1.0
4.2 0.8 4.0 0.8
Present depression symptoms (0–15) Present feelings about loss (0–10)
1.3 0.6 4.5 2.5
1.3 0.5 4.6 2.3
1.5 0.6 4.5 2.5
1.4 0.5 4.5 2.7
a
Number.
his/her appreciation to me for my care. (b) Family and relatives expressed their appreciation to me. (c) I was deeply grateful to the patient for everything (a = 0.72). Regret was assessed by averaging three items: (a) I did as much as I could as a family member. (b) I hastened the patient’s death because of my inadequate care. (c) There still remained much to be done for the patient (a = 0.79). Subjects responded on a 1–5 scale (‘‘highly disagree’’ to ‘‘highly agree’’). The quality of end-of-life home medical care was assessed using seven sub-scales (Akiyama et al., 2007):
his/her own time and continue to work. (vi) Nurses helped the patient to enjoy daily life, a = 0.90). Subjects responded on a 1–5 scale (‘‘highly disagree’’ to ‘‘highly agree’’). The score of each subscale was obtained by averaging points of the items. According to the length of time after bereavement, subjects were classified into three groups: 2–12 months, 13–24 months, 25–60 months. 2.3. Statistical analysis
1. Being free from symptoms (2 items: (i) Doctors tried to relieve physical discomfort of the patient. (ii) Doctors dealt promptly with discomforting symptoms of the patient, a = 0.92). 2. Peaceful death (1 item: The patient passed away peacefully). 3. Providing direct care by the caregiver (2 items: (i) The family took care of the patient as much as possible. (ii) The family could give direct nursing care for the patient, a = 0.81). 4. Care burden (2 items: (i) The living was easier for the family in their own home. (ii) The family could spend calm days, a = 0.82). 5. Good relationship with one’s physician (7 items: (i) The doctors gave sufficient explanation to the family about the expected outcome. (ii) The family sufficiently talked with the doctor about the future plan. (iii) The doctors gave sufficient explanation to the family about their present condition and the details of medical treatment. (iv) The family could estimate the patient’s prognosis by sufficient explanation of the doctor. (v) The family’s wishes were respected in the selection of treatment. (vi) Consideration was given so that the patient could participate in the selection of treatment. (vii) Treatment was planned with appropriate consideration of the previous course of the disease, a = 0.91). 6. Fulfilled home medical care service system (4 items: (i) Service use was possible when necessary without waiting. (ii) Service use was in accordance with the wishes of the family. (iii) Service use was in accordance with the wishes of the patient. (iv) The procedures of service use were simple, a = 0.87). 7. Care by medical staff (6 items: (i) The staff took appropriate measures when the patient became depressed. (ii) The staff tried so that the patient’s hope could be accomplished. (iii) Consideration was paid to relieving the patient’s concerns and worries. (iv) Consideration was given to the health of the family. (v) Consideration was given so that the family could have
One-way analysis of variance (ANOVA) was used to compare characteristics among the 3 length of time after bereavement groups. Multiple linear regression analyses were used to measure the relationship between caregiver’s present feelings and feelings during bereavement. Multiple linear regression analyses were used to examine the relationship between caregiver’s feelings during bereavement and home care evaluation. Statistical analysis was performed using SPSS 12.0J for Windows. 3. Results Of the 326 subjects, 26 were returned due to an incorrect address. We received 150 responses. Of 150 respondents, 147 responses were finally analyzed, because 3 responses without any answers were excluded (response rate: 49%). Table 2 Relationship between feelings during bereavement and present feelings, classified by the length of time after bereavement (standardized partial regr. coeff.). Feelings at present
Feelings during bereavement
Number
Length of time after bereavement 2–12 months
13–24 months
25–60 months
48
40
59
Depression symptoms
Satisfaction Regret
0.24 0.19
0.34 0.34
0.23 0.38
Feelings about loss
Satisfaction Regret
0.19 0.44*
0.03 0.63**
0.004 0.58***
*
p < 0.05. p < 0.01. *** p < 0.001. **
A. Akiyama et al. / Archives of Gerontology and Geriatrics 50 (2010) 175–178 Table 3 Relationship between home care evaluation and regret during bereavement (standardized partial regr. coeff.). Home care evaluation (n = 147) Being free from symptoms Peaceful death Providing direct care by the caregiver Care burden Good relationship with one’s physician Fulfilled home care service system Care by medical staff
b
p 0.03 0.31 0.55 0.11 0.21 0.24 0.03
0.732 0.001 0.001 0.187 0.031 0.002 0.678
F = 23.89; p < 0.001; adjusted R2 = 0.63.
Table 1 shows a comparison of characteristics among the 3 groups. There were no statistically significant differences among the 3 groups. Table 2 shows the relationship between caregiver’s present feelings and feelings during bereavement. Regret during bereavement was significantly associated with the present feelings about loss regardless of the length of time after bereavement. Satisfaction during bereavement was not significantly different among 3 groups. Table 3 shows the relationship between the quality of end-of-life home medical care and regret during bereavement. Variables which significantly decreased respondent’s scores of measures of regret during bereavement were patient’s peaceful death, providing direct care by the caregiver and fulfilled home medical care service system. 4. Discussion In this study caregiver’s regret during bereavement was significantly associated with their present feelings about loss regardless of the length of time after bereavement, whereas the strength of satisfaction during bereavement was not a predictor of recovery from bereavement. Previous studies indicated that it is important to assess the caregiver’s satisfaction as an element in evaluating the quality of end-of-life care (Stewart et al., 1999). Results of the present study suggest that inclusion of the caregiver’s regret in the evaluation is more effective in delineating the caregiver’s psychological wellbeing after bereavement. Our study also showed that the quality of end-of-life home medical care prior to death has a great impact on the prompt psychological recovery of the caregiver from bereavement. Providing direct care by the caregiver had an effect on minimizing caregiver’s regret during bereavement. Recent studies indicated that decreasing the care burden on the caregiver has been recognized as important factors of better adaptation to bereavement (Stroebe et al., 2006). Meanwhile, Schulz et al. (2001) demonstrated that non-caregiving family members had increased depression symptoms after bereavement. These findings suggest that it is necessary to bring caregivers into the process of practical end-of-life care on the condition that psychological and physical well-being is not affected. Consistent with previous studies, the present study also showed that how peacefully patients die remains in the memories of those who live on (Saunders, 1994; Carr et al., 2001). In particular, many Japanese patients or families prefer to pass away peacefully and beautifully according to the Japanese cultural tendency (Miyashita et al., 2007). Therefore, from a cultural perspective, peaceful death of the patient is a crucial component to lessen caregiver’s regret during bereavement. Our study showed that fulfilled home medical care service system was effective at minimizing regret during bereavement. The ‘out-of-hours’ period is a potentially problematic time for availability of high quality medical care (Foster et al., 2001; Worth et al., 2006). The institution specializing in home medical care was
177
available 24 h a day and a physician could arrive at a patient’s home within as early as 30 min. The institution was not only building up a cooperation system with hospitals or home-visit nursing stations but also equipped with highly advanced medical apparatus. Hirai et al. (2006) suggested that taking advantage of all the available treatments is an important factor for achieving a good death for Japanese people. Although, it is difficult to provide an advanced treatment at home, home care ensured services were provided in accordance with the wishes of the patient and the caregiver. Thus, it appears that this specific and well-organized support was one of the important factors to lessen caregiver’s regret during bereavement. The limitations of this study were that the survey was performed in one institution, in a retrospective manner and with a rather low response rate (49%). Comparing demographics between the responders and non-responders, there were no significant differences. It is possible that the sample was biased in that responders had adapted to the death of a loved one and nonresponders had not psychologically adapted from bereavement. Further surveys should be designed to investigate the relationship between the quality of end-of-life home medical care and adaptation to bereavement. In conclusion, this study suggested that end-of-life support to minimize caregiver’s regret during bereavement was crucial for better subsequent adaptation to bereavement. The main components which contribute to decrease feelings of regret during bereavement were: (1) providing direct care by the caregiver, (2) peaceful death of the patient, and (3) fulfilled home care service system. Conflict of interest statement None. Acknowledgements We thank the bereaved family members who participated in this study and Hiroo Hanabusa, MD, director of Shinjuku-Hiro Clinic and the staff for their co-operation. References Akiyama, A., Numata, K., Mikami, H., 2007. Factors influencing on the death of the elderly at home in an institution specializing home medical care: analysis of survey of the bereaved family. Nippon Ronen Igakkai Zasshi 44, 740–746 (in Japanese). Aoun, S., Kristjanson, L.J., Currow, D., Skett, K., Oldham, L., Yates, P., 2007. Terminally-ill people living alone without a caregiver: an Australian national scoping study of palliative care needs. Palliat. Med. 21, 29–34. Bonanno, G.A., Kaltman, S., 2001. The varieties of grief experience. Clin. Psychol. 21, 705–734. Brink, T.L., Yesavage, J.A., Lum, O., Heersema, P.H., Adey, M., Rose, T.L., 1982. Screening tests for geriatric depression. Clin. Gerontol. 1, 37–43. Carr, D., House, J.S., Wortman, C., Nesse, R., Kessler, R.C., 2001. Psychological adjustment to sudden and anticipated spousal loss among older widowed persons. J. Gerontol. B: Psychol. Sci. Soc. Sci. 56, S237–S248. Emanuel, E.J., Emanuel, L.L., 1998. The promise of a good death. Lancet 351 (Suppl. 2), SII21–SII29. Foster, J., Dale, J., Jessopp, L., 2001. A qualitative study of older people’s views of outof-hours services. Br. J. Gen. Pract. 51, 719–723. Fukui, S., Fukui, N., Kawagoe, H., 2004. Predictors of place of death for Japanese patients with advanced-stage malignant disease in home care settings: a nationwide survey. Cancer 101, 421–429. Grande, G.E., Farquhar, M.C., Barclay, S.I., Todd, C.J., 2004. Caregiver bereavement outcome: relationship with hospice at home, satisfaction with care, and home death. J. Palliat. Care 20, 69–77. Hirai, K., Miyashita, M., Morita, T., Sanjo, M., Uchimori, Y., 2006. Good death in Japanese cancer care: a qualitative study. J. Pain. Symptom. Manage. 31, 140– 147. Masuda, Y., Iguchi, A., 2005. End of life care for the elderly. Igaku no Ayumi 212, 209–213 (in Japanese). Miyashita, M., Sanjo, M., Morita, T., Hirai, K., Uchitomi, Y., 2007. Good death in cancer care: a nationwide quantitative study. Ann. Oncol. 18, 1090–1097.
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Saunders, C., 1994. Pain and impending death. In: Wall, P.D., Melzack, R. (Eds.), Textbook of Pain. Churchill-Livingstone, New York, pp. 861–868. Schulz, R., Beach, S.R., Lind, B., Martire, L.M., Zdaniuk, B., Hirsch, C., Jackson, S., Burton, L., 2001. Involvement in caregiving and adjustment to death of a spouse: findings from the caregiver health effects study. J. Am. Med. Assoc. 285, 3123–3129. Shiozaki, M., Morita, T., Hirai, K., Sakaguchi, Y., Tsuneto, S., Shima, Y., 2005. Why are bereaved family members dissatisfied with specialised inpatient palliative care service? A nationwide qualitative study. Palliat. Med. 19, 319–327. Stewart, A.L., Teno, J., Patrick, D.L., Joanne, L., 1999. The concept of quality of life of dying persons in the context of health care. J. Pain. Symptom. Manage. 17, 93–108.
Stroebe, M.S., Folkman, S., Hansson, R.O., Schut, H., 2006. The prediction of bereavement outcome: development of an integrative risk factor framework. Soc. Sci. Med. 63, 2440–2451. Sugden, R., 1985. Regret, recrimination and rationality. Theory Decis. 19, 77– 99. Wright, L.K., Clipp, E.C., George, L.K., 1993. Health consequences of caregiver stress. Med. Exerc. Nutr. Health 2, 181–195. Worth, A., Boyd, K., Kendall, M., Heaney, D., Macleod, U., Cormie, P., Hockley, J., Murray, S., 2006. Out-of-hours palliative care: a qualitative study of cancer patients, carers and professionals. Br. J. Gen. Pract. 56, 6–13.
Contents lists available at ScienceDirect
Archives of Gerontology and Geriatrics journal homepage: www.elsevier.com/locate/archger
Importance of end-of-life support to minimize caregiver’s regret during bereavement of the elderly for better subsequent adaptation to bereavement Akiko Akiyama a, Kumiko Numata b, Hiroshi Mikami a,* a b
Department of Health Promotion Science, Division of Health Sciences, Osaka University Graduate School of Medicine, 1-7 Yamadaoka, Suita City, Osaka 565-0871, Japan Department of In-home Medical Care, Tokyo Women’s Medical University, 8-1 Kawada-cho, Shinjuku-ku, Tokyo 162-8666, Japan
A R T I C L E I N F O
A B S T R A C T
Article history: Received 28 April 2008 Received in revised form 6 March 2009 Accepted 16 March 2009 Available online 18 April 2009
This study examined whether the quality of end-of-life home medical care affected caregiver’s psychological recovery from bereavement. We analyzed survey responses from an anonymous selfadministered questionnaire from 147 bereaved family members (caregivers). Questionnaire content included information on the quality of end-of-life home medical care, feelings during bereavement and present feelings. Results showed that caregiver regret during bereavement was significantly associated with present feelings about loss regardless of the length of time after death of a loved one. Aspects of endof-life support that were statistically significant at minimizing regret during bereavement were: (1) fulfilled home medical care service system, (2) peaceful death of the patient, and (3) providing direct care by the caregiver. These findings suggest that end-of-life support to minimize caregiver regret during bereavement was crucial for better subsequent adaptation to bereavement. ß 2009 Elsevier Ireland Ltd. All rights reserved.
Keywords: End-of-life Regret Depression Bereavement Caregiver
1. Introduction End-of-life care at home has become an important policy issue in Japan due to the advent of an extremely aged society (Masuda and Iguchi, 2005). As demonstrated through revisions to long-term care insurance and to the medical treatment fees, reforms in home care have been promoted as a high national priority. End-of-life care at home is necessary to support caregivers and patients (Emanuel and Emanuel, 1998), because the caregiver’s existence is crucial for the continuation of care at home (Fukui et al., 2004; Aoun et al., 2007) and caregivers are under a constant physical and psychological heavy burden (Wright et al., 1993). In addition, the death of a loved one that is one of the most stressful events associated with an increased risk of morbidity and mortality of caregivers (Bonanno and Kaltman, 2001; Stroebe et al., 2006). Thus, it is important to consider the psychological and physical well-being of the caregiver not only in the process of home care but also after bereavement (Schulz et al., 2001). While previous studies reported the importance of caregiver’s satisfaction with health care as an indicator of the quality of care (Stewart et al., 1999), other feelings of the caregiver such as regret have not been explored (Sugden, 1985; Shiozaki et al., 2005). Furthermore, researchers rarely examined whether the quality of end-of-life home medical care prior to the death of the patient had
* Corresponding author. Tel.: +81 6 6879 2551; fax: +81 6 6879 2551. E-mail address: [email protected] (H. Mikami). 0167-4943/$ – see front matter ß 2009 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.archger.2009.03.006
a facilitating effect on the caregiver’s psychological recovery from bereavement (Grande et al., 2004). Therefore, the purpose of this study was to examine whether the quality of end-of-life home medical care had a facilitating effect on the caregiver’s psychological recovery from bereavement. 2. Methods 2.1. Sample The subjects were 326 bereaved family members of patients (caregivers) aged 40 years and older who died between August 2001 and July 2006 and were receiving home care provided by an institution specializing in home care. 2.2. The measurements Data were collected through mailed, anonymous, self-administered questionnaire between September and October 2006. Depression symptoms were assessed using the 15-item geriatric depression scale (15-GDS) (Brink et al., 1982). Subjects were asked 15 yes or no questions yielding a potential range of 0–15 (‘‘none’’ to ‘‘severe’’) (a = 0.83). Present feelings about loss were assessed by averaging five items: sadness, loneliness, melancholy, regret, remorse. Subjects responded on a 0–10 scale (‘‘never’’ to ‘‘always’’) (a = 0.83). Feelings during bereavement were assessed using two subscales: satisfaction, regret (Akiyama et al., 2007). Satisfaction was assessed by averaging three items: (a) the patient expressed
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176
Table 1 Characteristics of the subjects classified by the length of time after bereavement, mean S.D., or n (%). Variables
Total 147a
2–12 months
13–24 months
48a
25–60 months
40a
59a
Patients Age, years Females Cause (cancer) Death (home)
80.6 11.9 74 (50.3) 81 (55.1) 108 (73.5
82.8 12.3 21 (43.8) 23 (47.9) 38 (80.9)
78.9 11.4 19 (45.0) 24 (60.0) 30 (76.9)
79.9 11.9 35 (59.3) 34 (57.6) 40 (67.8)
Caregivers Age, years Females
62.1 12.2 110 (74.8)
61.6 12.1 37 (77.1)
61.7 12.9 31 (77.5)
62.8 12.0 42 (72.4)
17 (35.4) 22 (45.8) 6 (12.5)
18 (45.0) 16 (40.0) 5 (12.5)
19 (32.2) 19 (32.2) 16 (27.1)
Relationship to the patient Spouse Child Child-in-law
54 (36.7) 57 (38.8) 27 (18.4)
Feeling during bereavement (1–5) Satisfaction Regret
4.1 0.9 3.9 0.9
4.1 0.8 4.0 0.9
4.0 1.0 3.9 1.0
4.2 0.8 4.0 0.8
Present depression symptoms (0–15) Present feelings about loss (0–10)
1.3 0.6 4.5 2.5
1.3 0.5 4.6 2.3
1.5 0.6 4.5 2.5
1.4 0.5 4.5 2.7
a
Number.
his/her appreciation to me for my care. (b) Family and relatives expressed their appreciation to me. (c) I was deeply grateful to the patient for everything (a = 0.72). Regret was assessed by averaging three items: (a) I did as much as I could as a family member. (b) I hastened the patient’s death because of my inadequate care. (c) There still remained much to be done for the patient (a = 0.79). Subjects responded on a 1–5 scale (‘‘highly disagree’’ to ‘‘highly agree’’). The quality of end-of-life home medical care was assessed using seven sub-scales (Akiyama et al., 2007):
his/her own time and continue to work. (vi) Nurses helped the patient to enjoy daily life, a = 0.90). Subjects responded on a 1–5 scale (‘‘highly disagree’’ to ‘‘highly agree’’). The score of each subscale was obtained by averaging points of the items. According to the length of time after bereavement, subjects were classified into three groups: 2–12 months, 13–24 months, 25–60 months. 2.3. Statistical analysis
1. Being free from symptoms (2 items: (i) Doctors tried to relieve physical discomfort of the patient. (ii) Doctors dealt promptly with discomforting symptoms of the patient, a = 0.92). 2. Peaceful death (1 item: The patient passed away peacefully). 3. Providing direct care by the caregiver (2 items: (i) The family took care of the patient as much as possible. (ii) The family could give direct nursing care for the patient, a = 0.81). 4. Care burden (2 items: (i) The living was easier for the family in their own home. (ii) The family could spend calm days, a = 0.82). 5. Good relationship with one’s physician (7 items: (i) The doctors gave sufficient explanation to the family about the expected outcome. (ii) The family sufficiently talked with the doctor about the future plan. (iii) The doctors gave sufficient explanation to the family about their present condition and the details of medical treatment. (iv) The family could estimate the patient’s prognosis by sufficient explanation of the doctor. (v) The family’s wishes were respected in the selection of treatment. (vi) Consideration was given so that the patient could participate in the selection of treatment. (vii) Treatment was planned with appropriate consideration of the previous course of the disease, a = 0.91). 6. Fulfilled home medical care service system (4 items: (i) Service use was possible when necessary without waiting. (ii) Service use was in accordance with the wishes of the family. (iii) Service use was in accordance with the wishes of the patient. (iv) The procedures of service use were simple, a = 0.87). 7. Care by medical staff (6 items: (i) The staff took appropriate measures when the patient became depressed. (ii) The staff tried so that the patient’s hope could be accomplished. (iii) Consideration was paid to relieving the patient’s concerns and worries. (iv) Consideration was given to the health of the family. (v) Consideration was given so that the family could have
One-way analysis of variance (ANOVA) was used to compare characteristics among the 3 length of time after bereavement groups. Multiple linear regression analyses were used to measure the relationship between caregiver’s present feelings and feelings during bereavement. Multiple linear regression analyses were used to examine the relationship between caregiver’s feelings during bereavement and home care evaluation. Statistical analysis was performed using SPSS 12.0J for Windows. 3. Results Of the 326 subjects, 26 were returned due to an incorrect address. We received 150 responses. Of 150 respondents, 147 responses were finally analyzed, because 3 responses without any answers were excluded (response rate: 49%). Table 2 Relationship between feelings during bereavement and present feelings, classified by the length of time after bereavement (standardized partial regr. coeff.). Feelings at present
Feelings during bereavement
Number
Length of time after bereavement 2–12 months
13–24 months
25–60 months
48
40
59
Depression symptoms
Satisfaction Regret
0.24 0.19
0.34 0.34
0.23 0.38
Feelings about loss
Satisfaction Regret
0.19 0.44*
0.03 0.63**
0.004 0.58***
*
p < 0.05. p < 0.01. *** p < 0.001. **
A. Akiyama et al. / Archives of Gerontology and Geriatrics 50 (2010) 175–178 Table 3 Relationship between home care evaluation and regret during bereavement (standardized partial regr. coeff.). Home care evaluation (n = 147) Being free from symptoms Peaceful death Providing direct care by the caregiver Care burden Good relationship with one’s physician Fulfilled home care service system Care by medical staff
b
p 0.03 0.31 0.55 0.11 0.21 0.24 0.03
0.732 0.001 0.001 0.187 0.031 0.002 0.678
F = 23.89; p < 0.001; adjusted R2 = 0.63.
Table 1 shows a comparison of characteristics among the 3 groups. There were no statistically significant differences among the 3 groups. Table 2 shows the relationship between caregiver’s present feelings and feelings during bereavement. Regret during bereavement was significantly associated with the present feelings about loss regardless of the length of time after bereavement. Satisfaction during bereavement was not significantly different among 3 groups. Table 3 shows the relationship between the quality of end-of-life home medical care and regret during bereavement. Variables which significantly decreased respondent’s scores of measures of regret during bereavement were patient’s peaceful death, providing direct care by the caregiver and fulfilled home medical care service system. 4. Discussion In this study caregiver’s regret during bereavement was significantly associated with their present feelings about loss regardless of the length of time after bereavement, whereas the strength of satisfaction during bereavement was not a predictor of recovery from bereavement. Previous studies indicated that it is important to assess the caregiver’s satisfaction as an element in evaluating the quality of end-of-life care (Stewart et al., 1999). Results of the present study suggest that inclusion of the caregiver’s regret in the evaluation is more effective in delineating the caregiver’s psychological wellbeing after bereavement. Our study also showed that the quality of end-of-life home medical care prior to death has a great impact on the prompt psychological recovery of the caregiver from bereavement. Providing direct care by the caregiver had an effect on minimizing caregiver’s regret during bereavement. Recent studies indicated that decreasing the care burden on the caregiver has been recognized as important factors of better adaptation to bereavement (Stroebe et al., 2006). Meanwhile, Schulz et al. (2001) demonstrated that non-caregiving family members had increased depression symptoms after bereavement. These findings suggest that it is necessary to bring caregivers into the process of practical end-of-life care on the condition that psychological and physical well-being is not affected. Consistent with previous studies, the present study also showed that how peacefully patients die remains in the memories of those who live on (Saunders, 1994; Carr et al., 2001). In particular, many Japanese patients or families prefer to pass away peacefully and beautifully according to the Japanese cultural tendency (Miyashita et al., 2007). Therefore, from a cultural perspective, peaceful death of the patient is a crucial component to lessen caregiver’s regret during bereavement. Our study showed that fulfilled home medical care service system was effective at minimizing regret during bereavement. The ‘out-of-hours’ period is a potentially problematic time for availability of high quality medical care (Foster et al., 2001; Worth et al., 2006). The institution specializing in home medical care was
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available 24 h a day and a physician could arrive at a patient’s home within as early as 30 min. The institution was not only building up a cooperation system with hospitals or home-visit nursing stations but also equipped with highly advanced medical apparatus. Hirai et al. (2006) suggested that taking advantage of all the available treatments is an important factor for achieving a good death for Japanese people. Although, it is difficult to provide an advanced treatment at home, home care ensured services were provided in accordance with the wishes of the patient and the caregiver. Thus, it appears that this specific and well-organized support was one of the important factors to lessen caregiver’s regret during bereavement. The limitations of this study were that the survey was performed in one institution, in a retrospective manner and with a rather low response rate (49%). Comparing demographics between the responders and non-responders, there were no significant differences. It is possible that the sample was biased in that responders had adapted to the death of a loved one and nonresponders had not psychologically adapted from bereavement. Further surveys should be designed to investigate the relationship between the quality of end-of-life home medical care and adaptation to bereavement. In conclusion, this study suggested that end-of-life support to minimize caregiver’s regret during bereavement was crucial for better subsequent adaptation to bereavement. The main components which contribute to decrease feelings of regret during bereavement were: (1) providing direct care by the caregiver, (2) peaceful death of the patient, and (3) fulfilled home care service system. Conflict of interest statement None. Acknowledgements We thank the bereaved family members who participated in this study and Hiroo Hanabusa, MD, director of Shinjuku-Hiro Clinic and the staff for their co-operation. References Akiyama, A., Numata, K., Mikami, H., 2007. Factors influencing on the death of the elderly at home in an institution specializing home medical care: analysis of survey of the bereaved family. Nippon Ronen Igakkai Zasshi 44, 740–746 (in Japanese). Aoun, S., Kristjanson, L.J., Currow, D., Skett, K., Oldham, L., Yates, P., 2007. Terminally-ill people living alone without a caregiver: an Australian national scoping study of palliative care needs. Palliat. Med. 21, 29–34. Bonanno, G.A., Kaltman, S., 2001. The varieties of grief experience. Clin. Psychol. 21, 705–734. Brink, T.L., Yesavage, J.A., Lum, O., Heersema, P.H., Adey, M., Rose, T.L., 1982. Screening tests for geriatric depression. Clin. Gerontol. 1, 37–43. Carr, D., House, J.S., Wortman, C., Nesse, R., Kessler, R.C., 2001. Psychological adjustment to sudden and anticipated spousal loss among older widowed persons. J. Gerontol. B: Psychol. Sci. Soc. Sci. 56, S237–S248. Emanuel, E.J., Emanuel, L.L., 1998. The promise of a good death. Lancet 351 (Suppl. 2), SII21–SII29. Foster, J., Dale, J., Jessopp, L., 2001. A qualitative study of older people’s views of outof-hours services. Br. J. Gen. Pract. 51, 719–723. Fukui, S., Fukui, N., Kawagoe, H., 2004. Predictors of place of death for Japanese patients with advanced-stage malignant disease in home care settings: a nationwide survey. Cancer 101, 421–429. Grande, G.E., Farquhar, M.C., Barclay, S.I., Todd, C.J., 2004. Caregiver bereavement outcome: relationship with hospice at home, satisfaction with care, and home death. J. Palliat. Care 20, 69–77. Hirai, K., Miyashita, M., Morita, T., Sanjo, M., Uchimori, Y., 2006. Good death in Japanese cancer care: a qualitative study. J. Pain. Symptom. Manage. 31, 140– 147. Masuda, Y., Iguchi, A., 2005. End of life care for the elderly. Igaku no Ayumi 212, 209–213 (in Japanese). Miyashita, M., Sanjo, M., Morita, T., Hirai, K., Uchitomi, Y., 2007. Good death in cancer care: a nationwide quantitative study. Ann. Oncol. 18, 1090–1097.
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