258

ORIGINAL
Japanese elderly individuals wish for enteral tube feeding
more strongly for their parents than for themselves
Harutaka Yamaguchi1), Koji Sato2), Keisuke Kawahito3), Akiko Miyatake4), Keisuke Kondo5), Keisuke Inaba1),
Kaori Inaba1), Shingo Kawaminami1), Ryo Tabata1), Shino Yuasa6), Yoshihiro Okura7), Atsushi Tuchiya8),
Yoshihiro Suzuki1), and Kenji Tani7)
1
Department of General Medicine, Tokushima University Graduate School of Biomedical Sciences, Tokushima, Japan, 2Medical student,
Tokushima University, Tokushima, Japan, 3Yoshinogawa Medical Center, Tokushima, Japan, 4Naruto Yamakami Hospital, Tokushima, Japan,
5
Ehime Prefectural Central Hospital, Ehime, Japan, 6Tokushima Prefectural Central Hospital, Tokushima, Japan, 7Department of General
Medicine and Primary Care, Tokushima University Hospital, Tokushima, Japan, 8Department of Civil and Environmental Studies, Tokushima
University Graduate School of Integrated Arts and Sciences, Tokushima, Japan

Abstract : [Introduction] The purpose of this study was to investigate the differences in the preference of enteraltube feeding between elderly inhabitants of Mugi town, Tokushima Prefecture, Japan, and their parents in various
physical conditions. [Methods] This population-based questionnaire survey studied 300 randomly selected participants aged 65–80 years. Respondents were to consider a situation where eating was difficult, and were questionedon their desire for tube feeding, using a visual analogue scale (VAS) ranging from “do not want tube feeding (0)” to“want tube feeding (100).” [Results] Valid responses of 103 (34.4%) participants were analyzed. Under conditions ofbeing “healthy,” “bedridden,” “with dementia,” and “bedridden and with dementia,” the median (IQR) of the VAS
values for the desire for tube feeding were 31.8 (3.3 to 83.8), 19.3 (2.4 to 52.3), 5.2 (0.7 to 18.9), 4.0 (0.3 to 15.2) for respondents and 55.2 (11.6 to 92.2), 48.7 (5.5 to 85.5), 9.0 (1.2 to 46.8), 5.1 (0.1 to 36.5) for parents, respectively. The VAS
values for the parents were significantly higher (p=0.001, 0.002, 0.001, and 0.01, respectively for the four conditions
described) for the same items. [Conclusion] Surrogate decisions made by family members often differ from what
the patients would have desired. J. Med. Invest. 66 : 258-263, August, 2019
Keywords : surrogate decision making, enteral tube feeding, questionnaire survey, visual analogue scale

INTRODUCTION
The Japanese population has 35 million adults (27.7% of thetotal population) over the age of 65 years, and this number is
expected to increase to 37 million (32.8%) by 2035. (1) Elderly
individuals tend to have declining health, often resulting indifficulty with swallowing. Introduction of enteral tube feeding
would be considered when it becomes impossible to maintaintheir life without nutritional support. The decision of whether
to introduce enteral tube feeding is one of the most important
problems faced by elderly individuals and their families. With
this background, the use of advance directives (AD) have become
widespread in recent years. In the United States, the prevalenceof AD was 21% in 1990 (2) and it was rapidly increasing to about
70% in 2000. (3) In 2013, however, though 70% of the Japanese
recognized the importance of leaving written instructions, only
3% actually had these documents ready, (4) which has increased
to 10% in 2017. (5) Advance care planning (ACP) (6) is a processthat supports adults of all ages and stages of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care. In Japan, however, in asurvey in 2017, only 3% were familiar with ACP. (5)A UK guideline states that “in cases where a patient cannot
express a wish regarding enteral tube feeding, the doctor
must make decisions on enteral tube feeding in the patient’s
Received for publication September 10, 2018 ; accepted April 29, 2019.
Address correspondence and reprint requests to Kenji Tani, M.D.,
Department of General Medicine and Primary Care, Tokushima
University Hospital, 50-1 Kuramoto-cho 2, Tokushima 770-8503,
Japan and Fax : +81-88-633-9687.

best interest. Consulting widely with all carers and family isessential.” (7) In Japan, the Ministry of Health, Labour andWelfare proposed a guideline for end-of life care in 2007, (8)which states that “When the patient’s wish is not known, carers
should take the following two steps : (1) when a family can guessa patient’s wish, the health care providers should follow them ;and (2) when a family cannot guess, the health care providers
must make the best decision following detailed discussion withthe family.” Regarding nutritional therapy, the guidelines of theJapanese Society for Parenteral and Enteral Nutrition state thatcaution should be taken when considering the introduction ofnutritional therapy in individuals with advanced dementia. (9)However, decision-making is a burden for many families, andsignificant emotional stress can remain after 6 months. (10)The preliminary discussion did not improve the accuracy rate
between patients’ preference and surrogates’ prediction, (11)and the accuracy rate between the decisions of legally assigned
surrogates and the surrogates designated by the patient were
not statistically different (68% vs. 69%), (12) but the ACP wasfound to reduce the burden on the family. (10) In the Japanese
questionnaire, only 7.5% individuals wanted to receive tube
feeding if bedridden and having dementia. (5) However, even insuch physical conditions, enteral tube feeding is often carried out
in Japan. (13) Although the usefulness of tube feeding in casesof terminal illness may depend on the situation, and there is noconclusive opinion, (14) families appear to have expectations
from tube feeding even if the health conditions do not improveafter 3 months from the start. (15)To the best of our knowledge, there is no report that consideredsurrogate decision making for enteral tube feeding for Japaneseand only one report on artificial hydration and nutrition (AHN)
for Japanese. (16) A questionnaire survey at a public seminar

The Journal of Medical Investigation Vol. 66 2019

259

The Journal of Medical Investigation Vol. 66 August 2019(n = 176, containing 35 medical staffs) asked participants about
the desire for AHN when oral intake became difficult, forthemselves and their families. Although only 46% wished for
AHN in their own case, 71% of them chose it for their parents
or family members. Therefore, while respondents did not wish
AHN for themselves, they wished it for their families, whichsuggests that surrogate decisions are often not what the patient
would have wanted. However, this report has some limitations.
First, it does not distinguish between those who wished enteraltube feeding from those who wished AHN, which includes not
only enteral tube feeding but also hydration. Second, the causeof the difficulty in oral ingestion is obscure. Third, no statisticalanalysis was performed.
Therefore, we conducted this study to compare the desire fornutrition by tube feeding among the elderly inhabitants of Mugi
town of the the Tokushima Prefecture, Japan, for themselves
versus for their parents in various physical conditions.

significant at p < 0.05.

RESULTS

Characteristics of the respondents
Three hundred questionnaires were mailed to selected candidates on August 25, 2015. While one was returned because of
unknown address, 143 responses (response rate : 47.8%) werecollected by October 15, 2015. We excluded 40 responses becauseof at least one unanswered VAS question (range of unansweredquestions : 2-8, the most common being 8 questions with 23
responses), and finally had a total of 103 valid responses (valid
response rate : 34.4%). The characteristics of the respondents are
summarized in Table 1. The mean age was 70.2 ± 7.8 years while
the median age was 70 (IQR 67–74) years. The study population
included 39 men (37.9%) and 64 women (62.1%).
Table 1. Characteristics of the respondents

MATERIALS AND METHODSThis population-based questionnaire survey was conducted in
Mugi town in the southern part of the Tokushima Prefecture,
Japan. It is a small seaside town with a population of 4763 ofwhich 41.9% are over the age of 65 years. With the cooperationof the town hall, 300 people were chosen from a total of 1601
residents aged 65 to 80 years from the July 2015 voter list, usinga systematic sampling method. We mailed the questionnaire andcollected anonymous responses by October 15, 2015. This study
was conducted according to the guidelines of the Declaration of
Helsinki. Participants were informed about the study design andreturned the questionnaires based on their free will.
The questionnaire had questions on age, sex, past medical history, present activities of daily living (ADL), hospital visits, andbereavement of parents. The participants were asked to imagine
a situation where they were in a nursing home, and it wasdifficult for them to eat from the mouth. They were then asked
if they would opt for tube feeding by nose or stomach, for maintenance of life, in the following physical conditions : (A) healthy
except for eating difficulty, (B) bedridden but can communicate,(C) has dementia and unable to communicate, and (D) bedriddenwith dementia and unable to communicate. The responses wererecorded using a visual analogue scale (VAS) ranging from “donot want tube feeding : 0 to “want tube feeding : 100.” We thenasked the same question if these situations were to arise in theirparents. When the physical condition of the respondent was A, B,
C, and D, it was described as Rsp-A, Rsp-B, Rsp-C, and Rsp-D,
respectively. Likewise, when the physical condition of the respondent’s parent was A, B, C, and D, it was described as Ps-A, Ps-B,
Ps-C, and Ps-D, respectively. The length of the line segment for
VAS was 75.1 mm and 78.1 mm in the case of the respondents
themselves and their parents, respectively, which was converted
to 100 each.
Statistical analyses were performed using IBM SPSS Statistics version 24 (IBM Corp, Armonk, NY, USA). Age indicated asmean ± SD was categorized into 3 groups (in years) : < 70, 70-74,
and ≥ 75 years. The VAS values were indicated as a median andinterquartile range (IQR). Wilcoxon signed rank test was used
to compare the VAS values in the case of respondents themselveswith their parents and for each physical condition. The Kruskal-Wallis test was performed to compare the results between
different age categories and VAS values. The Mann-Whitney
test was used for comparison of each VAS value based on sex,
ADL, and past medical history. In comparison between the different physical condition groups, p < 0.083 was made significant
by the Bonferroni method, and all other results were considered

Total number

n

%

103

100.0

Age (years)
65 ≤ < 70

47

45.6

70 ≤ < 75

31

30.1

75 ≤ ≤ 80

25

24.3

64

62.1

Go out by using transportation (J1)

84

81.6

Can move in the neighborhood (J2)

17

16.5

Need help for going out

00.0

Bedridden0

0.0

Unanswered

2

1.9

Women
Activity of daily living

Past history
Hypertension

47

45.6

Diabetes mellitus

17

16.7

Hyperlipidemia

16

15.5

Cancer9

8.7Stroke7

6.8

Fracture of the foot5

4.9

Ischemic heart disease

4

3.9

Pneumonia

4

3.9

Heart failure00.0

Renal failure required for dialysis

0

0.0

6

5.8

Both parents alive

The past medical history included hypertension [47 (45.6%)],diabetes [17 (16.7%)], hyperlipidemia [16 (15.5%)], cancer [9(8.7%)], stroke [7 (6.8%)], fracture of the foot [5 (4.9%)], pneumonia [4 (3.9%)], ischemic heart disease [4 (3.9%) (2 angina pectorisand 2 myocardial infarction)], heart failure [0], and dialysis[0]. The responses to current ADL showed that 84 respondents(81.6%) could go out by themselves using transportation (J1), 17(16.5%) could move around in the neighborhood (J2), and 2 left
the question unanswered, indicating that most of the respondents were self-supporting. While 77 (74.8%) respondents indicated that they were visiting the hospital, 6 (5.8%) of them were
not visiting the hospital, and 20 (19.4%) of them left the questionunanswered. While 97 (94.2%) respondents had lost at least one
parent, 6 (5.8%) respondents had not lost their parents.

The desire for tube feeding
The median (IQR) VAS values for the desire for tube feedingin physical conditions Rsp-A, Rsp-B, Rsp-C, and Rsp-D were260

H. Yamaguchi, et al. Perspectives on enteral tube feeding in Japan

31.8 (3.3 to 83.8), 19.3 (2.4 to 52.3), 5.2 (0.7 to 18.9), and 4.0 (0.3
to 15.2), respectively (Fig. 1a). A comparison of Rsp-A vs. RspB, and Rsp-B vs. Rsp-C revealed that the VAS values became
significantly lower as the physical condition worsened (p < 0.001,
p < 0.001, respectively). Rsp-C vs. Rsp-D did not show significant
results, using the Bonferroni method (p = 0.048). However, themedian (IQR) VAS values for the desire for tube feeding in caseof parents : Ps-A, Ps-B, Ps-C, and Ps-D were 55.2 (11.6 to 92.2),
48.7 (5.5 to 85.5), 9.0 (1.2 to 46.8), and 5.1 (0.1 to 36.5), respectively (Fig. 1b). As seen with the respondents, the VAS values
Fig 1. The VAS values for the desire for enteral tube feeding. The

VAS values significantly decrease as the physical condition worsens
except in Rsp-D. Data are presented as box plots, where the boxes
represent the 25th to 75th percentiles, the lines within the boxes
represent the median, and the lines outside the boxes represent thelast data point that occurs below the 25th or above the 75th percentile
and their respective inner fence (1.5 times the interquartile distance).
P-values are calculated using the Wilcoxon signed rank test. Aftercorrecting by the Bonferroni method, p < 0.083 is considered significant.

became lower as the physical condition worsened [Ps-A vs. Ps-B
(p = 0.001), Ps-B vs. Ps-C (p < 0.001), Ps-C vs. Ps-D (p < 0.001)].
When comparing the same items in case of self and parents(Rsp-A vs. Ps-A, Rsp-B vs. Ps-B, Rsp-C vs. Ps-C, and Rsp-D vs.
Ps-D), the VAS values for the desire for tube feeding in the case ofparents were significantly stronger (p = 0.001, 0.002, 0.001, 0.01,
respectively) (Table 2).
Table 2. VAS values of the desire for tube feeding in respondents
and their parents
Desire for tube feeding
Physical condition

Respondents(n=103)

Parents(n=103)p value

Healthy except for eating
difficulty (A)31.8 (3.3 to 83.8) 55.2 (11.6 to 92.2)

0.001

Bedridden (B)19.3 (2.4 to 52.3)

48.7 (5.5 to 85.5)

0.002

Dementia (C)

5.2 (0.7 to 18.9)

9.0 (1.2 to 46.8)

0.001

Bedridden and dementia(D)

4.0 (0.3 to 15.2)

5.1 (0.1 to 36.5)

0.01

P-values were calculated using Wilcoxon signed ranks tests.
In all cases, the desire for tube feeding for parents was higher
than that for the respondents themselves.

Relationship with past medical history

Fig.1a : Respondents with difficulty in eating under the following
conditions:
Rsp-A) healthy except for eating difficulty
Rsp-B) bedridden but can communicate
Rsp-C) have dementia and unable to communicate
Rsp-D) bedridden, have dementia and unable to communicate

When respondents had a history of stroke, they had significantly lower VAS values for the desire for tube feeding for theirparents in conditions Ps-A and Ps-B (p = 0.04 and 0.004, respectively) (Table 3). Based on ADL, 4 out of 7 stroke patients (57.1%)
were categorized as J1 and 3 (42.9%) as J2. Compared to individuals with no past history of a stroke who were categorized as J1[n = 80 (83.3%)], more stroke patients tended to fall into the J2
category [n = 14 (14.6%)] ; 2 (2.1%) individuals (2.1%) did not provide a response (p = 0.06, Chi-square test). Conditions Ps-C or
Ps-D which indicated higher deterioration of the parents’ physical condition did not show any significant difference regardlessof respondents’ history of stroke. On the other hand, when there
was a history of fracture in the foot, both Ps-C and Ps-D weresignificantly higher (p = 0.02, 0.03, respectively) (Table 4). No
respondents had a combined history of both stroke and fracture.
There were no significant associations with other conditions in
the medical history.
Table 3. The VAS values of the desire for tube feeding for parents
based on the respondent’s history of stroke
Desire for tube feeding
Physical condition

Fig. 1b : Parents with difficulty in eating under the following
conditions:
Ps-A) healthy except for eating difficultyPs-B) bedridden but can communicate
Ps-C) have dementia and unable to communicate
Ps-D) bedridden, have dementia and unable to communicate

Strokep valueYes (n=7)

No (n=96)

Healthy except for eating
difficulty (A)

2.7 (0.9 to 56.5)

55.6 (13.1 to 94.6)

0.04

Bedridden (B)

0.3 (0.0 to 22.9)

51.9 (7.7 to 87.4)

0.004

Dementia (C)

1.4 (1.2 to 17.1)

9.4 (1.2 to 47.6)

0.3

Bedridden and dementia(D)

1.5 (0.1 to 9.0)

7.6 (0.4 to 37.5)

0.2

Table 3. The VAS values [median (IQR)] for the desire for tube
feeding for parents based on whether the respondent has a historyof stroke. P-values were calculated using the Mann-Whitney U
test. Respondents who experienced a stroke desired for enteraltube feeding less than the others even though they were healthy
except for eating (underlined).

The Journal of Medical Investigation Vol. 66 August 2019
Table 4. The VAS values for the desire for tube feeding for parents
based on the respondent’s history of foot fracture
Desire for tube feeding
Physical condition

Fracture of the footYes (n=5)

p value

No (n=98)

Healthy except for eating
48.7 (16.7 to 86.6) 55.3 (10.2 to 92.2)
difficulty (A)0.9

Bedridden (B)69.3 (48.0 to 88.1) 48.6 (3.8 to 85.2)

0.2

Dementia (C)47.4 (36.0 to 94.5)

8.2 (1.2 to 44.8)

0.02

Bedridden and dementia
37.1 (25.9 to 46.1)(D)

4.3 (0.1 to 33.6)

0.03

Table 4. The VAS values [median (IQR)] for the desire for tube
feeding for parents classified based on whether the respondent
has a history of foot fracture. P-values were calculated using theMann-Whitney U test. Respondents who experienced a foot fracture desired for enteral tube feeding more than the others eventhough they had dementia (underlined).

Other items
Men had higher VAS values for normal cognitive functions
when compared to women : 51.5 vs. 14.9 (IQR 9.9 to 91.4 vs. 1.7
to 60.3) for Rsp-A, and 30.6 vs. 8.0 (IQR 7.4 to 89.3 vs. 1.5 to51.0) for Rsp-B (p = 0.02, 0.03, respectively) (not shown in table).
In Rsp-C, Rsp-D, and Ps-A to Ps-D, there were no significant
differences between men and women. The age category of the
respondents, hospital visits, and bereavement of parents did notaffect each item (not shown in table).

DISCUSSION
In any of the physical conditions described, the VAS values forparents were significantly higher than for the respondents themselves (Table 2), though the desire for tube feeding was reduced
as the physical condition worsened.
Some reports draw comparisons between older adults and thesurrogates. Bravo and colleagues conducted randomized control
trial interventions (workshop) among elderly people over the ageof 70 who could make decisions and the individuals they choose
as their surrogates. (17) In the baseline before intervention, in ahypothetical case of light to moderate stroke and severe dementia, the family wished for tube feeding more strongly than elderly
people themselves. Hare et al. also reported that families strongly
wished for tube feeding. (18) From these results, it can be said
that families desire more tube feeding than patients, and fromour results, the families desire for tube feeding more strongly
for patients than for themselves. As indicated in the guidelines,
decision-making in cases where the patient himself/herself cannot
judge should be decided after consultation between the family
and the medical staff, so that enteral tube feeding is introduced if
the family strongly wish for tube feeding. Without AD, there are
significantly more cases that would receive artificial respiration or
tube feeding and to die in ICU, (3) and there are significantly morecases that would receive all care possible. (19) In Japan, there are
few implementations of ACP and AD, (5) which would be the mostimportant reason for the frequent administration of tube feedingto patients with dementia in Japan. Other factors may include
the recognition of indications for tube feeding depending on the
medical practitioner, inadequate guidelines for tube feeding, andthe fact that the medical expenses are relatively inexpensive.
When becoming bedridden or losing communication, thedesire for tube feeding decreases for both respondents and their261

parents (Figure 1), supporting the guidelines which recommend
considering individual circumstances. (7-9) In the case of patients with dementia who cannot communicate, the impact of
being bedridden too was small. In the Ministry of Health, Laborand Welfare’s “Awareness Survey Report on Medical Care at theLast Phase of Life,” (5) six health stages have been described,
and participants were questioned about the desired medicalcare for each stage. Three of the six stages were such where no
tube feeding is necessary, or tube feeding was already ongoing.
Therefore, the survey assessed the desire for tube feeding in theremaining three health stages which included end-of-life cancer
state which is inconvenient but firm judgment is possible, severe
heart disease, and advanced dementia. Nasal nutrition for thesethree stages was desired by 9.8%, 9.0%, 7.5% of the participants,
respectively, while gastrostomy was desired by 6.0%, 5.5%, 4.8%,
respectively, clearly showing that only a few people wanted tube
feeding. The desire for tube feeding decreases in patients withadvanced dementia compared to those in terminal stages ofcancer or with severe heart disease, which is consistent withthe decline of the VAS value in Rsp-C compared to Rsp-B in ourstudy (Fig. 1a). In the report by Bravo et al., even in the case of
severe dementia, the family wanted more tube feeding than theprincipal, but a small number. (17) These findings suggest that it
is important to be able to communicate as a reason for prolonging
survival. Although caution should be taken when considering the
introduction of nutritional therapy in individuals with advanced
dementia according to the Japanese guidelines, (9) in Canada,(20) the United States, (21, 22) and Europe, (23) guidelines recommend that a feeding tube should not be inserted because, inpatients with advanced dementia, enteral tube feeding does not
improve survival, nor does it improve the individual’s comfort
level (24, 25). In order to reduce unnecessary tube feeding insituations where the individual does not desire for it and is not
appropriate medical care, familiarization of ACP and spreading
information to medical staff are considered important.
In the case of respondents with a past history of stroke, thedesire for enteral tube feeding for parents was significantly low
level even in situations with mild disorders (Table 3). Conversely,
respondents with a past history of a foot fracture had higher
VAS values in spite of dementia (Table 4). The reason for thisdifference may be the difference in the ability to predict the
prognosis. (26) Stroke can cause a permanent disorder, whereas
a fracture of the foot does not result in permanent disability inmost cases. Therefore, respondents with a past history of stroke
might consider disability seriously, while those with a past history of fracture might not. Therefore, the past medical history
can make the desire for tube feeding high or low regardless ofthe current physical condition, pointing to the importance of respecting individual thinking. However, careful attention shouldbe paid to this interpretation because the number of people withthese past histories was small. There may be other aspects of thepast medical histories such as experiences with hospitalizationor planning before the disease, but it was difficult to assess themin this study. Also, it was impossible to evaluate people with both
medical histories since there were no such patients.
This population-based survey has some limitations. First, thevalid response rate was 34%, and most of the respondents wereindependent based on their current ADL (98% independent, 2%
unanswered). Therefore, these results reflect the feelings fortube feeding in mostly healthy individuals. Second, the questions on tube feeding are based on the assumption of a time when
it would be needed in case of both the respondents and parents.
The opinions expressed in the survey could change when the situation becomes real. (27) While it is quite difficult for the same
person to be in states Rsp-A and Rsp-B and to investigate it prospectively, it is also difficult to get their opinion once dementia

262

H. Yamaguchi, et al. Perspectives on enteral tube feeding in Japansets in (Rsp-C and Rsp-D). Likewise, it is impossible to compare
the cases of self and of parents. Third, we adopted a mailing
method and therefore it is unknown whether each respondent
could assume the same physical situation. Fourth, repetitive
measurements of nonparametric data have no established test
to verify interactions. However, the age category of respondents,
the presence or absence of hospital visits, and bereavement of
parents had no significant influence on the VAS values, whichsuggest that these items only have a few interactions with the
VAS values for the desire for tube feeding. While men desired
more tube feeding in the conditions of Rsp-A and Rsp-B, they did
not desire it for the parents. Finally, since the length of the line
segment for respondents and parents was 75.1 mm and 78.1 mm,
respectively, it was converted into 100 in each case. However,as each question was on a different page, the influence on thereplies was assumed to be small.
In conclusion, the results of this study indicate that family
members who make surrogate decisions for enteral tube feeding
tend to desire treatments that the patients themselves would not
want. It is, therefore, necessary that the medical staff keep thisfact in mind when making decisions with surrogates.

CONFLICT OF INTERESTS-DISCLOSURE
None of the authors have any conflicts of interest to declare.

ACKNOWLEDGEMENTS
We wish to thank all the study participants, the staff of the
Mugi Town Hall for their assistance, and Ms. Yayoi Tagawa forher valuable secretarial support.

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