Advanced Care Planning: An Educational Intervention for the

Elderly in Indonesia

A Pilot Randomized Controlled Trial

Rista Fauziningtyas

, Joni Haryanto

and Suhartono Taat Putra

Faculty of Nursing Universitas Airlangga, Kampus C Mulyorejo, Surabaya, Indonesia

Faculty of Medicine Universitas Airlangga, Kampus A Jl Mayjen Prof. Dr. Moestopo 47 Surabaya, Indonesia

Keywords: Advanced Care Planning, Palliative Care, Dementia, Cognitive Impairment, Education, Nursing, Elderly.

Abstract: Discussions involving Advanced Care Planning (ACP) can be challenging in the setting of early dementia.

In this study, we aimed to evaluate an educational intervention that focused on ACP in elderly people with

mild cognitive impairment in Indonesia. This small pilot study used a randomized control trial design. A

total of 19 respondents with mild cognitive disorders were recruited and randomly assigned to either an

experimental (video, discussion, and print material) or control group (print material alone). Knowledge of

ACP, confidence in making end-of-life decisions, and care preferences were compared between the two

groups. A significant increase was noted in knowledge (p = 0.002) and confidence (p = 0.003), yet

regarding preferences, only 30% of respondents in the experimental group completed the ACP

documentation, and therefore limited conclusions could be made. Providing information in different formats

to people with a mild cognitive impairment may increase their ability to participate in ACP. Further research

is needed involving greater numbers of respondents.

1 BACKGROUND

Respecting the choices that elderly people make,

regarding treatment preferences, is an important

component of end-of-life care. Advanced Care

Planning (ACP) is a mechanism by which health

care professionals can broach sensitive discussions

concerning death, dying, and document care

preferences. ACP is a process that focuses on the

individual and commonly involves healthcare

professionals (doctors, nurses, psychologists, and

social workers) and ideally family members

(Robinson et al., 2012; Abel et al., 2013; Blackford

& Street, 2013). The purpose of ACP is to document

care preferences and appoint a surrogate decision

maker if a person can no longer make decisions for

themselves (Schaeffer, 2011).

An important element of ACP is clarifying a

person’s knowledge of their condition, treatments,

beliefs, and identifying their wishes regarding care

(Volandes et al., 2009; Deep et al., 2010). However,

such discussions are often taboo in almost all

countries in the Asia Pacific region (Con, 2008;

National Hospice & Palliative Care Organization,

2009), including Indonesia. This hesitancy to discuss

death and dying relates to cultural values and beliefs.

For example, in the Philippines, many people

believe that the future, including death, is in the

hands of God and therefore making plans for the

end-of-life care, including discussions regarding

ACP, would be usurping God’s authority and this is

unacceptable (Con, 2008). In Indonesia, end-of-life

discussions usually occur informally when reciting

the Al- Qur’an. Consequently, in Indonesia,

healthcare professionals, and carers alike, must

discuss end-of-life issues with great sensitivity so

they do not offend. Death is a universal phenomenon

regardless of age, and, therefore, talking about death

and dying is vital to the success of ACP (Silveira &

Forman, 2012). While carrying out effective ACP

for the elderly can be challenging, especially when

in the presence of cultural taboos and cognitive

decline, it is necessary for a “good” death to occur

(Lim et al., 2012; Davies et al., 2014).

In Indonesia, the improvement in healthcare

facilities and the growing economy has led to an

increase in the standard of living and life expectancy

amongst its citizens (Kementerian Kesehatan RI,

2014). These improved conditions have led to an

Fauziningtyas, R., Haryanto, J. and Putra, S.

Advanced Care Planning: An Educational Intervention for the Elderly in Indonesia.

DOI: 10.5220/0008320600670072

In Proceedings of the 9th International Nursing Conference (INC 2018), pages 67-72

ISBN: 978-989-758-336-0

increase in the proportion of elderly people in the

population. As a consequence, various chronic

diseases of aging such as hypertension,

osteoarthritis, and, importantly, cognitive

impairment and dementia have increased (WHO,

2011). Cognitive impairment can make the elderly

feel powerless when they are facing the end of life

(WHO, 2011). One solution to minimizing this sense

of powerlessness in the elderly is to introduce an

Advance Care Planning information session into

nursing homes (Volandes et al., 2009; Deep et al.,

2010).

Traditionally in Indonesia, healthcare

professionals verbally deliver information about the

end of life. This delivery method has limited

success, especially when the person is elderly. This

failure may be because the aging process can affect

sight and hearing (Nugroho, 2008). In addition, the

degree to which people understand verbal

descriptions concerning complex medical conditions

depends on their level of health (Volandes et al.,

2009). To overcome this problem, delivering

information in several formats has been shown to

improve health literacy. In a previous study in

Australia, a video decision support tool for advanced

dementia seemed to improve communication and

decision making for patients by helping them to

visualize future health states (Volandes et al., 2009;

Deep et al., 2010; Gjerberg et al., 2015). However, it

is still unknown how the video qualitatively altered

the client’s cognition regarding their future care.

This work will add information regarding cognition

in the elderly after the use of the video decision

support tool. People have different methods of

learning. Some can receive information better

visually, others through auditory means, or through a

certain sense (Franzoni & Assar, 2009). These

methods are affected by age, experience, physiology,

culture, and many other factors. Powerful media and

visualization techniques have shown to create lasting

memories and improve recall (Bert P.M. Creeemers

& Creemers, 2007; Franzoni & Assar, 2009). There

is no research to date that explores ACP discussions

amongst the elderly with an early cognitive decline

in Indonesia. Hence this study aims to address this

gap.

2 METHODS

2.1 Study Design

The researcher used a pilot experimental research

design with a randomized control group and a pre-

test/post-test design. The control group received

standard care from the participating nursing home

and a general information booklet on ACP. The

experimental group received the modified ACP

stages 1: introduction about end-of-life care and

dementia; and 2: discussion about end-of-life

preferences and progress of the disease.

2.2 Study Population, Sampling, and

Procedure

The population in this study were elderly people

who lived in a private nursing home in Surabaya,

East Java, Indonesia. There were 19 respondents:

nine in the control group and ten in the experimental

group. The inclusion criteria were as follows: had a

score of 17 or more on the Mini-Mental State Exam,

indicating that they were cognitively able to consent

to the study, were able to complete the first two

stages of the ACP program, speak either Indonesian

or Javanese, and have no major vision or hearing

issues. The exclusion criteria were moderate to

severe dementia, and/or other psychological

disorders such as schizophrenia. Simple random

sampling was the sampling technique used for this

study. The collection of data occurred over a two-

month period from May to June 2014. The ACP

Phase 1 intervention was provided during two

meetings per week for four weeks, and was

delivered as a group presentation. The information

for ACP Phase 2 was delivered in one meeting per

week for two weeks. These latter meetings consisted

of counseling and discussions and involved

respondents, researchers, and nursing personnel.

2.3 Intervention

Modifications of the ACP information included

additions made to the information booklet, a video,

and a narrated PowerPoint presentation. The two

videos used in this study were: 1) the video

"Advanced Stage Dementia," taken from research

conducted by Volandes et al. (2009); the duration of

the video is two minutes and 12 seconds; and 2) the

video "ACP”; this video was taken from the Agency

for Integrated Care (AIC), Taiwan, with a duration

of six minutes and seven seconds.

2.4 Measures

The primary outcomes were knowledge and

confidence. To measure these, questionnaires were

used. The questionnaires, investigating knowledge

and confidence, involved ten statements for which

INC 2018 - The 9th International Nursing Conference: Nurses at The Forefront Transforming Care, Science and Research

the respondents had to answer true or false. The

questionnaires that focused on confidence contained

ten statements about the initiative of the elderly to

follow the ACP program, persistence in completing

the ACP program, and effort clients make in

achieving the expected results. The secondary

outcome included preferences regarding end-of-life

care. The questionnaire that focused on preferences

had only six items that allowed for open-ended

responses and could be completed either by the

researcher or the respondent. The questionnaire end

of life six questions, including the following

components: 1) the identity of the proxy; 2) valuable

things for the elderly; 3) hopes and fears of the

elderly; 4) medical care at the end of life; 5) the

place at the end of life; and 6) place of burial and

funeral. The instruments used in this study to

measure the effectiveness of the intervention were

developed by the researchers based on the literature

review and previous research.

2.5 Data Analysis

Data analysis was conducted using the following

statistical tests: 1) Mann Whitney (to determine the

different variables of knowledge and confidence,

before and after treatment, between the two groups);

2) Wilcoxon (to test the variables of changes in

knowledge and confidence before and after

treatment in each group). Researchers determined by

the degree of significance at p<0.05. End-of-life care

preferences were obtained through structured

interviews and are described in the results section.

2.6 Ethical Clearance

This study was certified for ethical clearance by the

Faculty of Public Health, Universitas Airlangga with

the number 86/KEPK, April 7, 2014.

3 RESULTS

Respondents involved in this study were aged

between 81 and 91 years of age. Their education

level was mostly high school or equivalent, and this

level of education was almost equal across the two

groups (50% in the experimental group and 44.44 %

in the control group). MMSE examination results

showed that 67% of the control group and 60% of

Table 1: Cross tabulation of pre-test and post-test evidence of respondents’ knowledge.

Knowledge

Control group Experimental group

Pre-test Post-test Pre-test Post-test

f% f%f %f %

Goo

0 0 1 11.11 0 0 10 100

Enou

h 7 77.77 6 66.66 10 100 0 0

Less 2 22.22 2 22.22 0 0 0 0

Total 9 100 9 100 10 100 10 100

Wilcoxon Signed Rank Test p = 0.317 (p>0.050) Wilcoxon Signed Rank Test p = 0.002

(

<0.050

)

*f = frequency

Table 2: Cross tabulation of pre-test and post-test evidence of respondents’ self-effication.

Confidence

Control group Experimental group

Pre-test Post-test Pre-test Post-test

f% f% f %f %

h 1 11.11 1 11.11 0 0 9 90

Moderate 7 77.77 8 88.88 10 100 1 10

Low 1 11.11 0 0 0 0 0 0

Total 9 100 9 100 10 100 10 100

Wilcoxon Signed Rank Test p = 0.317 (p>0.050) Wilcoxon Signed Rank Test p = 0.003 (p<0.050)

*f = frequency

Advanced Care Planning: An Educational Intervention for the Elderly in Indonesia

the experimental group had mild cognitive

impairment. There were only two types of religious

affiliations that the respondents identified across the

two groups; Islam (80% in the experimental group

and 67% in the control group) and Christian (20% in

the experimental group and 33% in the control

group). Most respondents were married. All

respondents were Indonesian with most from the

island of Java. The reasons for the respondents

entering the nursing home was largely due to their

wishes (60 % in the experimental group and 45 % in

the control group).

Based on Table 1, the good level of knowledge

of the respondents in the experimental group was

increased (n = 100%) compared to the control group

(n = 11.11%). The statistical test in the experimental

group showed there was a significant change of

respondents' knowledge with a p-value = 0.002

(p<0.050).

Moreover, Table 2 also showed a high level of

confidence in the respondents. In the experimental

group there was an increase (n = 90% compared to

the control group (n = 11.11%). The statistical test

for the experimental group showed there was a

significant change of respondents' confidence with a

p-value = 0.003 (p<0.050).

None of the respondents in the control group

could finish the question regarding end-of-life care

planning, while only 30% respondents in the

experimental group completed the same question.

The results of the discussion phase are explained in

Table 3.

4 DISCUSSION

In summary, the results of this research suggest that

changes in the method of giving information to the

elderly can increase knowledge and the confidence

to discuss treatment at the end of their lives. This

condition does not allow the elderly to convey their

desires regarding treatment at the end of life. Only

30% of the elderly can discuss their final treatment.

Most respondents submit all decisions regarding

late-life care to the family.

Based on the characteristics of the respondents,

both treatment groups were Indonesian and mostly

Javanese. The Javanese culture states that talking

about death is taboo and precedes the will of God

the Almighty, so talk of death is avoided by most

elderly people. Also, history indicates that most

elderly patients enter the home nursing by their own

free will. This indicates that elderly people still have

a very close relationship with their family; the

selection of end-of-life care must be discussed with

Table 3: The end-of-life care answer.

End-of-Life Care Plannin

1. The identity of the

proxy

60% had already chosen

the proxy

40% did not know

“My first sons are people

who are responsible for my

medical treatment and give

me money for this nursing

home.”

“I have five children, and

they will pay for my

financial needs. If I have

health problems they will

hold a

amil

meetin

.”

2. Valuable things for the

elderly

100% said the most

valuable thing in their life

is thei

family

3. Hopes and fears of the

elderly

80% of respondents said

they still have unfulfilled

expectations and fea

20% of respondents said

they have no fear

4. Medical care at the end

of life

30% of respondents chose

medical care that supports

a quality of life without

rolonging life

30% do not know about

medical care

40% respondents chose

medical care that

prolonging life

5. The place for the end

of life

50% of respondents chose

end-of-life treatment at

home with family

10% of respondents chose

end-of-life treatment at

the nursing home

40% of respondents chose

end-of-life treatment in

hospital

6. Place of burial and

funeral.

70% respondents have still

not made decisions for a

lace for

urial and funeral

30% respondents have

already chosen a place for

urial and funeral

INC 2018 - The 9th International Nursing Conference: Nurses at The Forefront Transforming Care, Science and Research

the family. It is the cause of the elderly have not

chosen by complete end of life care. Based on

Indonesian culture, the elderly are important

members of the extended family. Their family,

especially their children, have a close relationship

with them (Riasmini, Sahar, & Resnawati, 2013), so,

every decision must be discussed with the family.

A third of the respondents who made the

selection are no different to the seven other

respondents regarding age, MMSE, or level of

education. Improved knowledge, self-affection and

behavior are also evident. This may be caused by

their health being less favorable than other

respondents. They already have limitations such as

difficulty in walking, accompanied by post-stroke

disorders. This is what allowed a third of

respondents to make a choice for end-of-life care.

The Asian culture allows discussion about a

person's chronic disease, but this is carried out by

health personnel and takes place with family or

people close to and not directly with the patient.

Family support is strongly associated with selection

decisions about end of life (Bravo et al., 2012; Lim

et al., 2012; Goodman et al., 2013). Lim et al. (2012)

also state that discussion regarding the end of life in

the Asian culture is still considered taboo. Modified

ACP stages 1 and 2 have helped respondents discuss

end-of-life healthcare, but respondents are still not

open to discussing it.

Stress affects perception response. In this study,

stress perception relates to knowledge and

confidence. Perceptual responses in this study are

the end-of-life preferences. This study showed no

difference in the theory. Improved knowledge and

changes in confidence are not concomitant with the

election of end-of-life care chosen by the elderly

(Putra, 2011). Knowledge and confidence in the

experimental group increased, but only a few

respondents could discuss end-of-life care planning.

This could be caused by the video provided not

being based on condition of Indonesian culture. So,

there are cultural factors that need to be considered

in the formation of perceptual responses. The

inability of the elderly to imagine the quality of their

lives under certain circumstances, the so-called

''paradoxical defect'', and the benefits and

disadvantages of the treatment received may be the

reason that not all elderly people are capable of

discussing and planning the end of their lives

(Volandes et al., 2009; Deep et al., 2010).

This study has several limitations. ACP

programs only used phase 1 and 2; phases 3–5 have

not been carried out due to the time constraints of

the study. Videos that were played by the

researchers were taken from Australia and Taiwan

with dialogue in English and Mandarin, so

respondents may have had difficulty understanding

the contents of the video, although it was translated

into Indonesian. Discussions during Phase 2 did not

include the family. A small number of respondents

were included because it was challenging to

persuade respondents to join this research. In the

future, a larger number should be included to

achieve more reliable results. Researchers advice on

further research includes involving the family in

Phase 2 of the ACP and create videos regarding

dementia and ACP based on Indonesian culture.

This would facilitate all respondents making end-of-

life care decisions. Nurses and nursing can motivate

the elderly to make plans for their end-of-life care

through the ACP modification program, as an

independent nursing intervention.

5 CONCLUSIONS

An accurate and timely discussion of diseases and

end-of-wlife care will help patients communicate

with family and loved ones. ACP can give the

elderly a real chance to have control over the

ultimate choice of their lives. By educating the

elderly on the topic of early treatment planning and

effectively communicating and involving the

families and medical personnel involved, nurses can

provide patients with the best opportunity to make

sure that others respect the final decision of their

life.

REFERENCES

Abel, J. et al. (2013) ‘The impact of advance care

planning of place of death, a hospice retrospective

cohort study,’ BMJ Supportive & Palliative Care,

3(2), pp. 168–173. doi: 10.1136/bmjspcare-2012-

000327.

Bert P.M. Creeemers and Creemers, B. P. M. (2007)

‘Combining different ways of learning and teaching in

a dynamic model of educational effectiveness,’

Journal of Basic Education, 17(1), pp. 1–39.

Blackford, J. and Street, A. F. (2013) ‘Facilitating advance

care planning in community palliative care:

conversation starters across the client journey,’

International Journal Of Palliative Nursing, 19(3), pp.

132–139. doi: 10.12968/ijpn.2013.19.3.132.

Bravo, G. et al. (2012) ‘Promoting advance planning for

health care and research among older adults: A

randomized controlled trial,’ BMC Medical Ethics.

BioMed Central Ltd, 13(1), p. 1. doi: 10.1186/1472-

Advanced Care Planning: An Educational Intervention for the Elderly in Indonesia

6939-13-1.

Con, A. (2008) ‘Cross-cultural considerations in

promoting Advance Care Planning. Canadian Insitute

of Health Research’. Available at:

www.bccancer.bc.ca.

Davies, N. et al. (2014) ‘Quality end-of-life care for

dementia: What have family carers told us so far? A

narrative synthesis.’, Palliative Medicine, 28(7), pp.

919–930. doi: 10.1177/0269216314526766.

Deep, K. S. et al. (2010) ‘“It helps me see with my heart”:

How video informs patients’ rationale for decisions

about future care in advanced dementia,’ Patient

Education and Counseling. Elsevier Ireland Ltd,

81(2), pp. 229–234. doi: 10.1016/j.pec.2010.02.004.

Franzoni, a. L. and Assar, S. (2009) ‘Student learning

styles adaptation method based on teaching strategies

and electronic media,’ Educational Technology &

Society, 12, pp. 15–29. doi: 10.1109/ICALT.2008.149.

Gjerberg, E. et al. (2015) ‘End-of-life care

communications and shared decision-making in

Norwegian nursing homes - Experiences and

perspectives of patients and relatives,’ BMC

Geriatrics. BMC Geriatrics, 15(1), pp. 1–13. doi:

10.1186/s12877-015-0096-y.

Goodman, C. et al. (2013) ‘Preferences and priorities for

ongoing and end-of-life care: A qualitative study of

older people with dementia resident in care homes,’

International Journal of Nursing Studies. Elsevier Ltd,

50(12), pp. 1639–1647. doi:

10.1016/j.ijnurstu.2013.06.008.

Kementerian Kesehatan RI (2014) Infodatin Lanjut Usia.

Lim, S. et al. (2012) ‘Advance Care Planning Guidelines

for working with Asian patients and their families’,

pp. 1–11.

National Hospice and Palliative Care Organization (2009)

Chinese-American Outreach Guide. Available at:

http://www.nhpco.org/sites/default/files/public/Access

/Chinese_American_Outreach_Guide.pdf.

Nugroho, W. (2008) Keperawatan Gerontik dan Geriatrik

3rd ed. Jakarta, Indonesia: EGC.

Putra, S. T. (2011) Psikoneuroimunologi kedokteran.

Surabaya: Pusat Penerbitan dan Percetakan Unair.

Riasmini, N. M., Sahar, J. and Resnawati, Y. (2013)

‘Pengalaman keluarga dalam penanganan lanjut usia

di masyarakat dari aspek budaya indonesia’, Journal

Ners, 8(1), pp. 98–106.

Robinson, L. et al. (2012) ‘A systematic review of the

effectiveness of advance care planning interventions

for people with cognitive impairment and dementia,’

Age and Ageing, 41(2), pp. 263–269. doi:

10.1093/ageing/afr148.

Schaeffer, B. Y. J. (2011) ‘Supporting End-of-Life

Decisions’, pp. 1–5.

Silveira, M. J. and Forman, J. (2012) ‘End-of-life care

from the perspective of primary care providers’,

Journal of General Internal Medicine

, 27(10), pp.

1287–1293. doi: 10.1007/s11606-012-2088-3.

Volandes, A. E. Et al. (2009) ‘Video decision support tool

for advance care planning in dementia: randomized

controlled trial’, BMJ, 338(may 28 2), pp. b2159–

b2159. doi: 10.1136/bmj.b2159.

WHO (2011) ‘Palliative Care for Older People: Better

Practices’, WHO Regional Office for Europe., pp. 1–

72.

INC 2018 - The 9th International Nursing Conference: Nurses at The Forefront Transforming Care, Science and Research