Yearbook on Journal of the Japan Society of Nursing Research 2013

Factors related to the Caregiver's Preferred Place of Death
Harumi Araki 1), Mariko Niikura 2), and Yasuko Sumitani 1)
Key Words :caregiverplace of deathcare experience

ABSTRACTThis study aims to clarify the factors related to the choice of the place where a person giving nursing care
wishes to die and to examine better ways of supporting such persons. In 2009, a questionnaire survey was
performed among caregivers of patients who used a home-visit nursing station in prefecture A, and 375
caregivers were selected as the subjects of the study. In this survey, 109, 149, and 117 subjects answered“at home” (29.1%), “not sure” (39.7%), and “in hospital or facility” (31.2%) as their preferred place ofdeath. In contrast to the subjects who answered “at home,” many subjects who answered “not sure” had no
collaborator or no experience of terminal care at home. Moreover, many subjects who answered “in hospitalor facility” had male patients and had no collaborator or no experience of terminal care at home. Therefore,
to ensure that caregivers were aware of terminal care at home during their care experiences, a system bywhich home-visit nursing services can be easily pursued without collaborators should be established, andopportunities to increase the understanding of terminal care at home should be provided.

I. Introduction

care about my place of death,” although wanting to die at home,
was high. In other words, people who mentionedthatreceiving
terminal care at homewould be difficult had considered theburden oncaregivers and forewentterminal care at homealthough they wanted it. Moreover, these persons are anxious
aboutterminal care at home because emergency measures
cannot be taken,unlike in a hospital.
In order to provide terminal care for patients while
respecting their intentions in the future, it is necessary toestablish local communities where persons who want to die
at home can fulfill their wishes. It is also important to examine
how caregivers who are actually involved in care at home
think about problems with terminal care while providingcare.
As the satisfaction felt when providingterminal care at home
is reported to be high18), 19), the number of caregiverswho
want to die at home may increase depending on their careexperience. However, it is still unknown how caregivers’care
experience affects their preferred place of death.
Thus, the aim of the present study is to elucidate
howcaregivers who have experienced care think about theirplace of death, what factors are related to the selection, andhow to support care.

Following the increase in the number of elderly persons,Japan has become a super-aged society and terminal care has
become animportant issue.1)The Ministry of Health, Labourand Welfare (MHLW)2) aims at “providing appropriate
terminal care for patients while respecting their intentions”
and attempts to increase the ratio of death at home to
40% by 2025. Regarding home-visit nursing care, therevision of medical repayment standards in the fiscal year
2008increasedthe fee for terminal care and added anextra fee
to a new system of providing 24-hour services. Thus, Japan’s
policies aim to improve home-related services and tend to
attach importance to death at home.3)
Previous studies on death at home reported that the ratio of
patients who died at home was high when patients expressed
an intention to die at home or their families expressed thispreference for the patient.4), 5)Regarding the consciousnessof caregivers, it was pointed out that although thesatisfactionlevelof caregivers who had providedterminal care
at home was high,6), 7) theyfelt anxious about giving terminal
care at home and their physical and mental burdens wereheavy.8)−13) Factors that enabled death at home were reported
to be “doctors’ visit to patients,” “24-hour home-visit nursing
care services,” and “both patients’ and caregivers’ desires fordeath at home.”14), 15)
The MHLW conducted theInvestigation into Terminal
Care16)onJapanese nationalsin 2010. Only10.9% of thesubjectswanted to receive medical treatment at home
until their deathsif theyhad no chance to be curedand wereapproaching death,and as many as 66.2% answered thatreceiving medical treatment at home was difficult to realize.
When asked to provide reasons for their responses, 79.5%of
the subjectsreported that “receiving medical treatment at home
is a burden on a patient’sfamily who takes care of the patient”
and 54.1%mentionedthat “there is uneasiness in treatment
when the condition of a patient suddenly changes.” Hatano17)
reported that the ratio of persons who worried about theirfamilies’trouble and inconvenience and answered “I do not

II. Methods
1. Subjects

The present study distributedquestionnaires to 1,060
caregivers (subjects in this study) of users(patients inthis study) at 30 home-visit nursing stations (out of 38) in
prefecture A and collected answers from 651 caregivers (aresponse rate of61.4%). We considered that caregivers aged
above 40 would find it easier to think about their preferredplace of death, so this study selected caregivers aged above
40. Of the selectedcaregivers, 375 caregivers (an effective
response rate of 35.4%) who filled inthe necessary items
and satisfied the following conditions: (1) they were thepatients’spouse, children, or daughters-in-law; and (2)thepatients were aged above 40, were analyzed.
In addition, this study was performed as part of aninvestigation on the satisfaction level of home-visit nursing
station users.

1) Department of Nursing, Toyama College of Welfare Science2) Department of Gerontological Nursing, Faculty of Medicine,
University of Toyama

2. Survey

Corresponding author. Tel.: +81 766 55 5567; Fax: +81 766 55 5645.
E-mail address: h-araki@te.urayama.ac.jp (H. Araki)

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The questionnaires were distributed by nurses throughThis paper was published at “the Japan Society of Nursing Research” Vol.35 No.2 in 2012.

Yearbook on Journal of the Japan Society of Nursing Research 2013

4. Ethical considerations

home-visit nursing stations in August 2009. The caregivers
mailed the completed questionnaires to researchers.
Regarding the patients, “age,” “gender,” “nursing care level,”“period spent using home-visit nursing services,” “principal
disease,” “dementia,” and “use of services” were set as items.
Regardingthe caregivers, “preferred place of death,”“age,” “gender,” “family relationship,” “working,” “periodof care,” “care level in daytime,” “care level in nighttime,”“collaborator (who assist caregivers),” “subjective feelingof health,” and “experience of terminal care” were surveyed.
Regarding attitudes toward care, “anxiety about the future”
and “caregiver burden” were set as negative items, “pleasureof spending time with patient” and “sense of fulfillment
by care” were set as positive items, and these items were
evaluated using a 5-point scale. The effect and satisfactionlevel of home-visit nursing services were also evaluatedusing a 4-point scale. The 5-point scale for “anxiety about
the future” comprised “always,” “frequently,” “sometimes,”“infrequently,” and “not at all.” The answers of “always,”“frequently,” and “sometimes” were determined to belong toa“yes” group and those of “infrequently” and “not at all” were
determined to belong to an “others” group. The 5-point scalefor “caregiver burden” comprised “serious,” “considerable,”“moderate,” “little,” and “not at all.” The answers of “serious”
and “considerable” were determined to belong to a “heavy”
group and those of “moderate,” “little,” and “not at all” were
determined to belong to an “others” group. The 4-point scalefor “pleasure of spending time with patient” and “senseof fulfillment by care” comprised “always,” “sometimes,”“seldom,” and “not at all.” The answers of “always” and“sometimes” were determined to belong to a “yes” group andthose of “seldom” and “not at all” were determined to belong
to a “no” group.
The 4-point scale for the effect and satisfaction level ofhome-visit nursing servicescomprised “high,” “moderate,”“little,” and “not at all.” Since the number of answers of “high”
was large, the answers of “high” were determined to belong
to an “effective” group and those of “moderate,” “little,” and“not at all” were determined to belong to an “other” group.
“Care experience” in this study included caregivers’ mental,
physical, and care conditions that were felt during providingcare.

In the survey, the anonymityof caregivers was secured
such that caregivers anonymously filled in the questionnaires
and directly sent them to researchers by mail using returnenvelopes. We explained the following matters to caregivers
in writing: (1) the purpose and method of the survey; (2)caregivers who returnedthe questionnaires were regarded
as having consented to the survey; (3) if caregivers
refused to answer the questionnaires, they would suffer nodisadvantages in health care services afterward; and (4)caregivers who refused to answer the questionnaires did notneed to send them back. The present study was performed
after being approved by the Ethics Committee, Toyama
College of Welfare Science.
III. Results

1. Ratios of caregivers’ preferred places of death

Regarding caregivers’ preferred places of death, 109
caregivers answered “at home” (29.1%), 149 answered “notsure” (39.7%) and 117 answered “in hospital or facility”(31.2%).
2. Relationships between caregivers’ preferred places of deathand patient attributes (Table 1)

The average age of the patients was 79.8±10.8 years. Of
the 375 patients, 170 were men (45.3%), 227 patients (60.5)
were classified as receivinga high level of nursing care, and
156 patients (41.6%) suffered from cerebrovascular disease.
No significant difference was observed inthe distribution of
the three groupsbetween the caregivers’ preferred places ofdeath and patient attributes.
3. Relationships betweencaregivers’preferred places of deathand caregiver attributes (Table 2)

The average age of the caregivers was 65.8 ±10.2 years. Of
the 375 caregivers, 104 were men (27.7%). The χ2 testfoundsignificant differences in the distribution among the threegroups between the caregivers’ preferred places of deathanditems of “age,” “family relationship,” “working,” “collaborator,”and “experience of terminal care.”Regarding preferred places of death, the majority of caregivers aged below 65 years answered “not sure” (46.6%) while
the majority of caregivers aged above 65 years answered “athome” (35.5%). When “family relationship” was “spouse,”manycaregivers answered “at home” (34.7%). When “family
relationship” was “child” and “daughter-in-law,” the majority ofcaregivers answered “not sure.” When “work” was“yes,”manycaregivers answered “not sure” (48.6%). When“collaborator” was “yes,” manycaregivers answered “notsure” (38.3%) as well. The majority ofcaregivers who had had
experience of terminal care preferred to die at home (45.6%).
When “experience of terminal care” was “no,” the majority ofcaregivers answered “not sure” (41.4%).
No significant difference was observed in the distribution
among the three groups between caregivers’ preferred placesof death anditems of “gender,” “period of care,” “daytime carelevel,” “nighttime care level,” and “subjective feeling of health.”

3. Analysis

Caregivers’ preferred places of death were classified into
three groups of “at home,” “not sure,” and “in hospital or facility,” and the relationships between these three places and thesurvey items were analyzed using the chi-square (χ2) test.
In the χ2 test, a difference at the 10% significance level
was observed in the question items related to care experience and the gender and age of the patients and caregivers.
Subsequently, multinomiallogistic regression analysis was
performed, in which these items were forcedly entered asmoderatorand independent variablesand the caregivers’
preferred places of death were used as dependent variables
to obtain the odds ratio regardingthe caregivers’ preferredplaces of death. In the analysis, “at home” was used as a standard for the dependent variables, and the values of correlation coefficients among the forcedly entered items were in arange of ± 0.502. The analysis was conducted using SPSS 18.0
for Windows.
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This paper was published at “the Japan Society of Nursing Research” Vol.35 No.2 in 2012.

Yearbook on Journal of the Japan Society of Nursing Research 2013

Table 1. Relationships between caregivers’ preferred places of death and patient attributes

Item and categoryn = 375 Unit: person (%)

Caregivers’ preferred places of death

Total number

Total numberAge

At homeBelow 65 years old

109 ( 29.1 )

149 ( 39.7 )342 ( 100.0 )

100 ( 29.2 )

133 ( 38.9 )

109 ( 31.9 )

205 ( 100.0 )

58 ( 28.3 )

88 ( 42.9 )

59 ( 28.8 )

33 ( 100.0 )GenderMale

170 ( 100.0 )FemaleNursing care level
Serious

OthersDuration of use of home-visit
nursing services†
Below 2 years
Above 2 years

Principal disease

Cerebrovascular disease

227 ( 100.0 )

148 ( 100.0 )

181 ( 100.0 )

194 ( 100.0 )156 ( 100.0 )Others219 ( 100.0 )

No

285 ( 100.0 )Dementia
Yes

In hospital or facility χ2 test

375 ( 100.0 )79.8 ± 10.8 (46–103)

Above 65 years old

Not sure90 ( 100.0 )9 ( 27.3 )

51 ( 30.0 )

65 ( 28.6 )

44 ( 29.7 )

56 ( 30.9 )

53 ( 27.3 )

45 ( 28.8 )

64 ( 29.2 )

27 ( 30.0 )

82 ( 28.8 )

117 ( 31.2 )

16 ( 48.5 )

8 ( 24.2 )

61 ( 35.9 )n.s.

58 ( 34.1 )

94 ( 41.4 )

n.s.

68 ( 30.0 )

55 ( 37.2 )n.s.

49 ( 33.1 )

66 ( 36.5 )

59 ( 32.6 )

83 ( 42.8 )n.s.

58 ( 29.9 )

66 ( 42.3 )

45 ( 28.8 )

83 ( 37.9 )n.s.

72 ( 32.9 )

32 ( 35.6 )

117 ( 41.1 )[Note] n.s.: not significant† Period of using home-visit nursing services is divided into two parts according to the median.

31 ( 34.4 )

n.s.

86 ( 30.2 )Table 2. Relationships between caregivers’ preferred places of death and caregiver attributes

Item

Age

Total number

GenderFamily relationship
Work

Period of care †1

Daytime care level †2

Nightime care level †2
Collaborator

Subjective feeling of healthExperience of terminal care

Category
Below 65 years old

Above 65 years old
Male

FemaleSpouseChild

Daughter-in-law
YesNo

Total number

At home375 (100.0 )109 (29.1)

197 (100.0)

70 (35.5)

65.8 ± 10.2 (40–89)
178 (100.0)

104 (100.0)

271 (100.0)
196 (100.0)

114 (100.0)

65 (100.0)

109 (100.0)
266 (100.0)

39 (21.9)

36 (34.6)

Not sure149 (39.7)
83 (46.6)

66 (33.5)

42 (40.4)

73 (26.9)

107 (39.5)

13 (20.0)

27 (41.5)

68 (34.7)

28 (24.6)

27 (24.8)
82 (30.8)

n = 375 Unit: person (%)

Caregivers’ preferred places of death67 (34.2)

55 (48.2)

53 (48.6)
96 (36.1)

In hospital or facility
117 (31.2)
56 (31.5)

61 (31.0)

26 (25.0)

91 (33.6)

61 (31.1)

31 (27.2)

25 (38.5)

29 (26.6)
88 (33.1)

Below 4 years

184 (100.0)

59 (32.1)

64 (34.8)

61 (33.2)

Others113 (100.0)

34 (30.1)

51 (45.1)

28 (24.8)

Above 4 years

Continuous care
Continuous care
OthersYes
No

Healthy

UnhealthyYesNo

191 (100.0)

262 (100.0)
225 (100.0)

150 (100.0)

290 (100.0)

85 (100.0)

267 (100.0)

108 (100.0)

90 (100.0)

285 (100.0)[Note] #: p < 0.1, **: p < 0.01, ***: p < 0.001, n.s.: not significant†1: Period of care is divided into two parts according to the median.
†2: Others in care level refer to “sometimes,” “rare,” and “not al all.”50 (26.2)

75 (28.6)
66 (29.3)

43 (28.7)

85 (44.5)

98 (37.4)
90 (40.0)59 (39.3)

95 (32.8)

111 (38.3)

31 (28.7)

39 (36.1)

14 (16.5)

78 (29.2)

41 (45.6)

68 (23.9)

38 (44.7)

110 (41.2)

31 (34.4)

118 (41.4)

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This paper was published at “the Japan Society of Nursing Research” Vol.35 No.2 in 2012.

56 (29.3)

89 (34.0)
69 (30.7)

48 (32.0)
84 (29.0)

33 (38.8)
79 (29.6)

38 (35.2)

18 (20.0)
99 (34.7)

χ2 test
**

n.s.
**
#

n.s.
n.s.
n.s.
**

n.s.
***

Yearbook on Journal of the Japan Society of Nursing Research 2013

4. Relationship between caregivers’ preferred places of deathand use of services (Table 3)

When “pleasure of spending time with patient” was “yes”
and “no,”the percentages of caregivers who answered “athome” and “not sure” were 36.2% and 43.4%, respectively.
When “sense of fulfillment by care” was “yes” and “no,” thepercentage of caregivers who answered “not sure” and “athome” were 36.8% and 43.6%, respectively. No significant
difference was observed in the distribution among the threegroups between caregivers’ preferred places of death and“anxiety about the future” and “caregiver burden.”

When “home-visit bathing service” was “yes,” the majorityof the caregivers answered “at home” (38.2%). When “homevisit bathing service” was “no,”the majority of the caregivers
answered “not sure” (41.6%). When “short stay” was “yes”
and “no,”the majority of the caregivers answered “not sure”(41.5%) and (38.9%), respectively. No significant difference
was observed in the distribution among the three groups
between caregivers’ preferred places of death andthe use ofother services.

6. Relationship between caregivers’ preferred places of death andthe effect and satisfaction level of home-visit nursing services
No significant difference was observed in the distribution
among the three groups between caregivers’ preferred placesof death andthe effect and satisfaction level of home-visit

5. Relationship between caregivers’ preferred places of death
and attitudes toward care (Table 4)

Table 3. Relationship between caregivers’ preferred places of death and use of services

Item and category

Total number

Total numberHome help
Yes

Home-visit bathing service
Yes

254 (100.0)

68 (26.8)

101 (39.8)

85 (33.5)

75 (26.2)

119 (41.6)

92 (32.2)

79 (28.6)

108 (39.1)

89 (32.2)

67 (33.2)

74 (36.6)

89 (100.0)No

276 (100.0)

Day careYes
No

Day care with rehabilitation service
Yes
No

Short stay

99 (100.0)

41 (33.9)
34 (38.2)
30 (30.3)

173 (100.0)

42 (24.3)

72 (100.0)

23 (31.9)

202 (100.0)

303 (100.0)

79 (39.1)

53 (30.6)

Home-visit guidance on drug management
Yes

202 (100.0)

9 (100.0)

2 (22.2)

28 (28.3)

56 (32.4)
61 (30.2)

30 (41.7)

56 (27.7)

173 (100.0)No

25 (28.1)

75 (43.4)

100 (38.9)

Yes

Home-visit medical service

32 (26.4)

41 (41.4)

83 (32.3)

26 (22.0)

117 (31.2)

30 (33.7)

119 (39.3)

118 (100.0)
257 (100.0)

48 (39.7)

86 (28.4)

Yes

No

In hospital or facility

149 (39.7)

286 (100.0)

Yes

Not sure

109 (29.1)

No

Home-visit rehabilitative service

At homen = 375 Unit: person (%)

375 (100.0)

121 (100.0)

No

Caregivers’ preferred places of death

19 (26.4)

98 (32.3)

49 (41.5)

43 (36.4)

74 (28.8)

70 (40.5)

4 (44.4)

50 (28.9)
67 (33.2)

3 (33.3)

No366 (100.0)

107 (29.2)

145 (39.6)

114 (31.1)

No

367 (100.0)

107 (29.2)

147 (40.1)

113 (30.8)

No

316 (100.0)

91 (28.8)132 (41.8)

93 (29.4)

Meal on wheel
Yes

8 (100.0)

Housing renovationYes

58 (100.0)

Welfare support
Yes

No[Note] #: p < 0.1, n.s.: not significant

276 (100.0)
99 (100.0)

2 (25.0)

18 (31.0)

77 (27.9)
32 (32.3)

2 (25.0)

17 (29.3)

114 (41.3)

35 (35.4)

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This paper was published at “the Japan Society of Nursing Research” Vol.35 No.2 in 2012.

4 (50.0)23 (39.7)

85 (30.8)

32 (32.3)

χ2 test
n.s.
#
n.s.
n.s.
n.s.
#
n.s.
n.s.
n.s.
n.s.
n.s.

Yearbook on Journal of the Japan Society of Nursing Research 2013

Table 4. Relationship between caregivers’ preferred places of death and attitudes toward care

Item and category

Total number

Anxiety about the future

149 (39.7)

172 (100.0)

45 (26.2)

74 (43.0)

Heavy

135 (100.0)

OthersEnjoy spending time with patient
Yes
No

Sense of fulfillment from providing care
YesNo

Not sure

109 (29.1)

203 (100.0)

Caregiver burden

Caregivers' preferred places of death

At home375 (100.0)

Yes

Othersn = 375 Unit: person (%)

240 (100.0)

163 (100.0)

212 (100.0)

212 (100.0)

163 (100.0)(Note) *: p < 0.05, **: p < 0.01, n.s.: not significant

64 (31.5)

In hospital or facility
117 (31.2)

75 (36.9)

37 (27.4)

64 (31.5)

53 (30.8)

52 (38.5)

72 (30.0)

46 (34.1)

97 (40.4)

59 (36.2)

71 (29.6)

57 (35.0)

50 (23.6)

n.s.
*

70 (33.0)

78 (36.8)

34 (20.9)

n.s.

47 (28.8)

92 (43.4)

75 (35.4)

χ2 test59 (27.8)

71 (43.6)**

58 (35.6)

Table 5. Factors related to caregivers’ selection of preferred place of death

Item

Patient’s age

Patient’s gender
Home-visit bathing
service
Short stay

Caregiver’s age
Caregiver’s relationship
Caregiver’s work

Collaborator
Experience withterminal care
Enjoy spending time withpatient
Sense of fulfillment fromproviding caren = 375“Not sure” instead of Odds 95% confidence interval p value “In hospital or facility” Odds 95% confidence interval p value
ratio Lower limit Upper limit
instead of “at home” ratio Lower limit Upper limit“at home”<65 years/>65 years
Male/Female
No/Yes
No/Yes<65 years/>65 years

1.605

1.390

0.611
1.211

1.250

0.521

0.737

0.328
0.661

0.583

4.945

2.621

1.138
2.217

2.676

n.s.

<65 years/>65 years

n.s.

No/Yesn.s.

n.s.

Daughter-in-law/Spouse 0.571

1.299

n.s.

No/Yes

0.779

0.416

1.456

n.s.

No/Yes

2.198

1.263

4.000

*

No/Yes

No/Yes
No/Yes

2.475

1.655
1.268

1.196

0.927
0.695

[Note] *: p < 0.05, ***: p < 0.001, n.s.: not significant
Multinomial logistic regression analysis (forced entry)

5.128

2.954
2.314

1.246

0.229

2.826

n.s.

0.782

2.926

n.s.

0.553

2.811

n.s.

0.233

1.403

1.079

0.382

Child/Spouse

0.357

0.121

No/Yes

1.179

0.589

No/Yes

3.484

1.764

*

n.s.
n.s.

No/Yes

No/Yes
No/Yes

2.646

1.252
1.591

1.250

0.679
0.844

4.217

1.344

*

n.s.

1.051

n.s.

2.364

n.s.

6.849

***

5.587

2.307
3.000

n.s.
*

n.s.
n.s.

5.587]). In the case where caregivers had answered “no” to“experience of terminal care,” the odds ratio of those who
selected “not sure” instead of “at home” was 2.198 (95%
confidence interval [1.263, 4.000]), and that of those who
selected “in hospital or facility” instead of “at home” was3.48 (95% confidence interval [1.764, 6.849]). For caregivers
who had answered “male” to “patient’s gender,” the odds ratioof those who selected “in hospital or facility” instead of “athome” was 2.133 (95% confidence interval [1.079, 4.217]).

nursing services.

7. Factors related to caregivers’preferred place of death (Table 5)
Caregivers who had selected “not sure” instead of “at home”
were related to items of “collaborator” and “experience ofterminal care.The caregivers who had selected “in hospitalor facility” instead of “at home” were related to items of“patient’s gender,” “collaborator,” and “experience of terminalcare.”For caregivers who had answered “no” to “collaborator,”the odds ratio of those who selected “not sure” instead of “athome” was 2.475 (95% confidence interval [1.196,5.128]),
and that ofthose who selected “in hospital or facility” insteadof “at home” was 2.646 (95% confidence interval [1.250,

0.717

n.s.

0.165

2.355

1.512

<65 years/>65 years

0.463

0.430

No/Yes

2.133

n.s.

Child/Spouse

Daughter-in-law/Spouse 1.007

Male/Female

0.804

IV. Discussion

1. Caregivers’preferred places of death61

In this study, approximately 30%, 30%, and 40% of theThis paper was published at “the Japan Society of Nursing Research” Vol.35 No.2 in 2012.

Yearbook on Journal of the Japan Society of Nursing Research 2013caregivers selected “at home,” “in hospital or facility,” and“not sure” as theirpreferred places of death, respectively.
The investigation into terminal care20)conducted by the
MHLW on Japanese nationalsrevealed that10.9% and 4.4%of the subjects preferred “at home” and “not sure” as theirplaces of death, respectively. The present study cannot be
simply compared with the investigation conducted by the
MHLWbecause of different question items. However, it wasconsidered that since the subjects of the present study werecaregivers who had actuallyprovided care at home, manyof them preferred their homes as their place of death. In a
study conducted by Araki et al.21) in 2005, 45% of caregivers
preferred to die at home. However, Araki et al. provided only
two options: “at home” and “in hospital or facility.” In thepresent study, we added “not sure.” Because of this addition,
caregivers who wereunable to choosemight have selected“not sure” although they might have preferred “at home” or“in hospital or facility.” Therefore, in the present study, theratio of caregivers who selected “at home” as theirpreferredplace of death was low.
Alfons Deeken22) described the necessity of death education(1986). Miyazaki23) mentioned in 2008 that “the keyword forterminal care in residential facilities is preparation. Since
death is inevitable, how to spend time till one’s dying day isimportant. The role of the surrounding people of a person isto support the person to accomplish self-realization.” In the
future, those who are involved in terminal care, such as caremanagers and service providers, may be requested to not only
support patients but also take part in caregivers’ preparation
for death. In the process of preparing for death, caregivers
seriously think about their lives and deaths through their careexperiences and discuss their preferred places of death with
their families.

the consciousness of citizens needs to be changed from “given
medical and welfare services” to “self-determination of theirlast breath.” It is also considered necessary to set upnetworks
in which caregivers can use local resources by themselves
and to establish local communities where collaborators areeasy to find.
Therefore, it is important to examine how to improve thequality of care services and to build a system in which persons
without collaborators in their families and relatives feel thatthey could die at home in peace.
The present study revealed that experience of terminal careis an important factorthat influences caregivers’ preference
to die at home. Although the burden on caregivers who
had experienced terminal care was heavy27)−32), their levelof satisfaction was also high33), 34). Therefore, experience ofterminal care was considered an important opportunity for
caregivers to think about their death. It was suggested thatcaregivers who had experienced terminal care preferred to
select terminal care at home. In the future, it will be necessary
to support patients’ families such that theyperceive that they
have sufficient support in terminal care.
Many caregivers who took care of male patients selected“in hospital or facility” as their preferred place of death.
These caregivers were mainly women (wives, daughters,
and daughters-in-law). The reason for selecting “in hospitalor facility” instead of “not sure” was probably because
they strongly felt difficulty in providing terminal care athome. Caregivers who took care of male patients in thepresent study might have made their choices a such because
they think thatreceiving medical treatment at home isa burden on the patient’s family and that there would
beinconveniencein treatment when the condition of a patient
suddenly changes;thesewere extracted as reasons for thefactor “receiving medical treatment at home was difficult torealize” in the investigation into terminal care conducted by
the MHLW35). However, the present study could not elucidate
such a relationship. In the future, it is necessary to examine
why taking care of male patients decreases the number ofcaregivers who want to die at home.

2. Factors related to caregivers’ preferred place of death

Many caregivers who selected “not sure” instead of “athome” had nocollaboratororexperience of terminal care. Many
caregivers who selected “in hospital or facility” instead of “athome” hadmalepatients, nocollaborator, and no experienceof terminal care.
Therefore, having a collaborator is an important factor
in influencing caregivers’ preferenceof death at home.
Ueda24) reported in 2004 that “even after the Long-TermCare Insurance Act was enforced, patients’ families arestill fatigued with care, and care at home mainly depends
on families’ care capabilities.” Washio25) reported in 2005
that “the ratio of caregivers suffering from depression has
not largely decreased since the Long-Term Care Insurance
Program was introduced five years ago.” Therefore, thecaregiver burdendoes not seem to have reduced even after the
introduction of the Long-Term Care Insurance Program. In thepresent study, caregivers’ selection of preferred place of death
was not related to “caregiver burden” and “anxiety about the
future,” but strongly related to having a collaborator.
Following the decrease in the number of family members
living together, one-person and couple-only households
are predicted to be more common than ever. Muramatsu26)
proposed in 2006 that “ideas that care ofa person should
be taken by his/her family and a person who cannot live
alone should be institutionalized are out-of-date. Mutualaid housesare to be prepared using vacant houses, to where
neighbors, nurses, and volunteers visit on occasions.” Thus,

V. Conclusion

Approximately 30% and 40% of the caregivers selected“at home” and “not sure,” respectively, as their preferredplaces of death. There is a possibility that after experiencing
care, although the ratio of caregivers who select “at home”
increases, that of caregivers who select “not sure”also
increases.
Having nocollaborator, noexperience of terminal care, anda male patient were factors that influenced the selection of“not sure” and “in hospital or facility” instead of “at home.”
Therefore, it is important to help caregivers be awareof terminal care at homeduringtheir care experience, toestablisha system in which home-visit nursing services canbe easily pursued without collaborators, and to provide
opportunities to increase the understanding of terminal care
at home.
The present study was supported by the Nipponkowa
Welfare Foundation Gerontology Research-Aid Fund.

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This paper was published at “the Japan Society of Nursing Research” Vol.35 No.2 in 2012.

Yearbook on Journal of the Japan Society of Nursing Research 2013

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