Palliative and end-of-life care’s barriers for
older adults
Retno Indarwati, Rista Fauziningtyas, Gilang Dwi Kuncahyo, Rr Dian Tristiana,
Chong Mei Chan and Graeme D. Smith
Retno Indarwati, Rista
Fauziningtyas, Gilang Dwi
Kuncahyo and Rr Dian Tristiana
are all based at Faculty of
Nursing, Universitas Airlangga,
Surabaya, Indonesia.
Chong Mei Chan is based at
Department of Nursing
Sciences, Faculty of Medicine,
University of Malaya, Kuala
Lumpur, Malaysia.
Graeme D. Smith is based at
Faculty of Nursing and
Midwifery, Edinburgh Napier
University, Edinburgh, UK.
PAGE 72 j WORKING WITH OLDER PEOPLE
Abstract
Purpose – A nursing home is a place that is familiar with death, since many older adults will spend the latter
part of their lives in such a setting. However, research on this topic is still limited, especially in Indonesia. The
purpose of this paper is to explore the barriers to successful palliative and, more generally, end-of-life care
(EOLC) for older adults in nursing homes and to explore nurses’ views on the subject.
Design/methodology/approach – The study is of a qualitative nature and it employs a phenomenological
approach. In-depth interviews with 15 nurses who taken care of older adults in a nursing home were
conducted. The data were analysed using thematic content analysis.
Findings – Barriers to effective EOLC include lack of knowledge, ineffectual communication and
insufficient resources.
Research limitations/implications – Better policies are needed, especially in training related to palliative/
EOLC subjects and equitable distribution of professional health workers to overcome the barriers. The
government should also encourage collaboration involving hospitals, Puskesmas (Health Centre Services),
community and resident care settings in sharing knowledge and skills, especially for nurses.
Originality/value – The barriers identified in palliative and EOLC have been found to be almost identical to
those encountered in other health services.
Keywords Residential care, Older people, Nursing home, Barrier, End-of-life care, Palliative
Paper type Research paper
Introduction
Nursing homes are perceived as places where death is a familiar occurrence (Trotta, 2007). In
recent decades, nursing homes have become a more frequent place for dying in comparison to
hospitals. In 2013, 47 per cent of all people dying died in nursing homes in Norway (Fosse et al.,
2014). In 2011, the percentage of older adults aged 65–74 years constituted 7 per cent of the
total number of deaths (78,591) in Wales and England. This number further increased to
17 per cent (total deaths 143,422) in older adults aged 75–84 years in Wales and England. The
highest percentage of deaths in nursing homes for older people (aged 85 years and over) in
Wales and England is 34 per cent, amounting to a total of 180,103 deaths (Davidson and Gentry,
2013). These figures highlight the importance of providing adequate end-of-life care (EOLC) for
older adults in nursing home in future (Fosse et al., 2014).
Older adults at the end of life tend to have complex problems and, often, multiple disabilities.
These, in turn, may become barriers for the professionals who care for them. The barriers
include: physical decline and disabilities, insufficient knowledge, skills and awareness
on the carers’ part, insufficient policies that can offer support, lack of integration between
palliative and EOLC among all health and social services, lack of resources, and faulty
assumption about older adults’ desires and needs at the end of their lives (WHO, 2011).
Therefore, what is needed is collaboration in applying skills in geriatric and palliative
care to effectively support older adults who are at the end of their lives and their families
(Goddard et al., 2013).
j VOL. 24 NO. 1 2020, pp. 72-80, © Emerald Publishing Limited, ISSN 1366-3666 DOI 10.1108/WWOP-08-2019-0021
The WHO stated that, globally, more than 29m people died from diseases that needed palliative
and EOLC. In total, 69 per cent of them were individuals aged 60 years and over (World Health
Organization, 2014). The global population aged 60 years or more amounted to 962m in 2017.
The number of older adults is expected to double by 2050, reaching almost 2.1bn. The
population of people aged 80 years or over is projected to more than triple between 2017 and
2050, up from 137m to 425m (United Nation Department of Economic and Social Affairs, 2017).
The Asia Pacific region has the largest number of older adults in the world, 508m. By 2030, older
person are predicted to grow by 56 per cent, reaching 1.4bn (Dugarova, 2017).
Generally, Asian people feel uneasy talking about death and end-of-life (EOL). It is considered a
somewhat taboo topic. Ageing and death are seen as pertaining to the religious sphere,
determined and “managed” by Lip (2009), include Indonesian. There are, of course, differences
between nationalities but a general trend towards reticence can be easily identified. Important
decisions regarding health and EOLC are made in accordance with family, religious and cultural
values (Kim et al., 2012). Generally, people believe that hope and optimism are fruits of faith (Lim,
2012) and that disease and death come from God and must therefore be accepted (Con, 2008).
This is in contrast with Western culture, such as in the UK, for example. There open
communication with patients is preferred. This, in turn, reflects principles of autonomy,
accompanied by openness and awareness and open communication about dying and EOLC
(Kazdaglis et al., 2010).
Within the Indonesian context, palliative care is regulated by the Decree of the Minister of Health of
Republic of Indonesia, No. 812/Menkes/SK/VII/2007. The nurses’ roles in palliative and EOLC
amounts to meeting daily needs, such as eating, bathing, dressing, helping patients to engage in
spiritual activities, and the administering of medicines (Lord et al., 2018). However, a proper
implementation of palliative services in Indonesia is still in the early development phase and is still
limited to hospitals, Puskesmas (Effendy, 2012), community and home visit services in certain
areas (Rochmawati et al., 2016). Nursing homes in Indonesia are still not offering palliative and
EOLC among their services.
The research and implementation of palliative and EOLC care in nursing home within the
Indonesian context is still limited (Lynch et al., 2013; Effendy et al., 2015; Rochmawati et al.,
2016). The exploration of this subject is very interesting, especially about barriers to provide
palliative and EOLC for older adults in nursing home. This study aims to explore
barriers on palliative and EOLC for older adults in nursing home. It is hoped that
the research presented in this paper will make a contribution to research on palliative and
EOLC, thus filling a knowledge gap and potentially improving the quality of health services for
older adults in nursing homes.

Methodology
This study is of a qualitative nature and it adopts a phenomenological approach. Such approach
allows the researcher to explore the perceived barriers that are experienced by nurses who
provides palliative and EOLC for older adults in nursing homes. A phenomenological approach
was chosen to enable the expressions meaning of nurses’ life experiences when caring for older
adults. This perspective helps in strengthening memories and revealing the barriers perceived
during the provision of end of life care for older adults (Creswell, 2014).

Participants
A snowball purposive sampling technique was employed in this study of nurses working in a
nursing home located in Surabaya, Indonesia. Inclusions criteria for this study were: nurses had to
have been working in the nursing home for at least, after the orientation period; they had to have
experience of providing palliative and EOLC to older adults; and the had to be willing to agree to
share and their experiences of work. The researcher contacted 18 possible participants; three of
them refused to participate in this study, having objections to being audio-recorded. Recruitment
of participants was discontinued once 15 participants were found. The criteria for selecting
participants are presented in the Table I.

VOL. 24 NO. 1 2020 j WORKING WITH OLDER PEOPLE j PAGE 73

 Table I The characteristic of the nurses
No. Categorised f %

1 Age
21–25 years 4 26.7
26–30 years 7 46.7
31–35 years 2 13.3
36–40 years 2 13.3
2 Sex
Male 7 46.7
Female 8 53.3
3 Education
Diploma 11 73.3
Bachelor 4 26.7
4 Years of nursing experience
6 months–1 year 4 26.7
2–5 year 10 66.7
W5 years 1 6.7
5 Attend a training/conference on Palliative/End-of-life Care
No 13 86.7
Yes 2 13.3
6 Having education about Palliative/ End-of-life Care during bachelor/diploma study
No 1 6.7
Yes 14 93.3

Data collection
The research was conducted from April to September 2018. The researchers made initial contact
with potential participants before conducting research by, in the first instance, approaching the
head of the respective nursing home. Subsequently, they were asked to recommend other
nurses as potential participants. Participants filled a demographic questionnaire before the
interviews process began. Two of the authors (GDK and RF) conducted the interviews. All
interviews were in Indonesian, with a duration of between 30 and 60 min. They were conducted in
a private room in work place. The researchers met with participants four times to do the following:
fill the consent form; fill a demographic questionnaire; to be interviewed; and to validate the
verbatim transcripts. Researchers also made some observations and recorded field notes after
each interview. The field notes were subsequently used to facilitate recall and for further
exploration of non-verbal language.
The interviews were semi-structured. They were developed to allow participants to “tell their
experiences at work” while caring for older adults at the end of their lives, where only
palliative care was an option. The interview questions and a demographic questionnaire that
consisted of basic information about participants were compiled after a literature review of
palliative and EOL research (Goddard et al., 2013; Hosie et al., 2014; Jennings et al., 2018).
The researchers also added empirical knowledge about older adults and nursing homes
through discussions with professionals with expertise in geriatric nursing. Examples of the
questions asked included the following: “What do you think about Palliative or end-of-life
care?”, “Please tell me about your experience when you provide care for older adults
in their end-of-life stage?”, “What were the barriers that your encountered when you providing
care for them?”.

Ethical consideration
Ethical Approval for this study was obtained before participants recruitment. The authorisation
details are: 521-KEPK, Research Ethics Committee of Faculty of Nursing Universitas A*******.
Each participant signed an informed consent before being interviewed and was assigned a
pseudonym to preserve anonymity. Data were stored in a locked cabinet and all electronic copies
protected by password.

PAGE 74 j WORKING WITH OLDER PEOPLE j VOL. 24 NO. 1 2020

Data analysis
As stated, the data were analysed and interpreted using the Colaizzi method. This method allows
for data to be clarified with the help of participants, thus leading to possible changes in the results
(Creswell, 2014). The data were coded, giving interpretative meaning to events and situations.
Once identified, each unit of meaning was categorised. Subsequently, each theme was
integrated into a complete description. The researcher validated results with participants.
Participants were allowed to read verbatim and validated meaning. The last phase consisted of
refining the results by utilising information gathered during the validation process. Two of the
researchers were involved “from the outside”, to help validate findings, discuss different
perspectives and highlight possible researcher bias that may have influenced data interpretation.
Further discussions were conducted until a full consensus was reached, if different findings arose
(Creswell, 2014).

Rigour and trustworthiness

As measures for trustworthiness of research, Guba and Lincoln substituted reliability and
validity with “trustworthiness”. Trustworthiness is maintained by credibility, transferability,
dependability and confirmability. Credibility is trust that results that reflect reality; transferability
shows that findings could be applied to other contexts; dependability refers to whether the
study is replicable; and confirmability shows that the results are sourced from the respondent
and not from the bias of the researcher (Lincoln and Guba, 1985). The researchers kept
reflective diaries to express thoughts, ideas, and feelings about palliative/EOLC care during the
research process.

Translation
The translation process is an important part of analysing qualitative research data. The data
needed to be translated from Indonesian to English to be intelligible to non-Indonesian
speakers. In this study, the translation was carried out using the following strategies: topics
that are relevant to research were identified; forward-translation of verbatim, field-notes
and meanings into English; back-translation of verbatim, field-note and meaning into
Indonesian; and differences between the two versions were examined and discussed. In this
study, the researchers collaborated with two bilingual people to carry out the translation
process. The first translator translated literally and verbatim, including field-notes.
Subsequently, the second translator translated back to Indonesian. If there were
discrepancies, discussions were held until a consensus on the final version among the
researchers was agreed.

Findings
The nurses’ perceived barriers in providing good and effective palliative and EOLC in for older
adults at nursing homes are manifest through the following three categories: knowledge,
communication and the presence of barriers (see Table II).

Table II Summary of barriers in palliative and end-of life care for older adults in nursing home

No. Barriers Source of barriers Strategy to reduce the barriers

1 Knowledge 1. Palliative is the same as EOLC Look for information from internet or discuss with lecturers
2. Never attend training about EOLC
2 Communication 1. Hearing Impairment Change communication methods: speak louder, clearer, use non-verbal
2. The inability of older adult to communicate language, and ask other nurse to translate
3. Languages differences
3 Resources availability 1. Medical devices and drugs Refer to Puskesmas or hospital
2. Physician
Note: Puskesmas (Health Services Centre)

VOL. 24 NO. 1 2020 j WORKING WITH OLDER PEOPLE j PAGE 75

 Knowledge barriers
The source of knowledge barriers is related two elements. All the interviewed nurses did not fully
understand all aspects of EOLC. They consider EOLC to be the same as palliative care:
Participant 2: “I don’t know what end-of-life care is? As I know, palliative care is for cancer patients
who are stage 4. Palliative and end-of-life care is the same”.

Most of the participants stated that they rarely received palliative/EOLC training:
Participant 6: “There is rarely a conference here, especially about end-of-life care. Moreover, Nursing
home does not provide training funds.”

The strategies that nurses used to improve their knowledge consisted in browsing the internet
and discussing with lecturers who came to their nursing home to guide students:
Participant 12:“I browse information on the internet, now it’s easy to find information, or if there are any
difficulties, I usually invite lectures who came to teach their students to discuss.”

Communication barriers
The source of communication barriers is related two features. More than half of the interviewed
nurses said that they encountered difficulties in communicating with residents, mainly due to
older adults experiencing hearing loss:
Participant 11: “When I examine the health of the residents who have hearing loss it was difficult for me.
It is because I must repeat the question many times, I also had to speak loudly. That is quite draining.”

Another cause of difficulty for nursing in communicating is that some residents are unable
to speak:
Participant 11: “Uhmmmm, sometimes they can’t speak. They cannot express what they feel.”

Participant 4: “He only can speak “eee eee”, we don’t understand what it is to be.”

A small number of participants said that they had difficulty communicating with older adults
because they spoke a different language:
Participant 15: “There are resident from Madura. I can’t speak the Madura Language. I want to use the
Indonesian language but he can’t. ‘I’m confused, it’s too complicated.”

Participants explained strategies to reduce communication barriers, such as speaking

louder and/or slower, using non-verbal language, and asking other nurses to act as
interpreters where possible:
Participant 8: “Usually I use my hands, for example, if I want to ask ‘do you want to eat?’ I imitate how
to eat. Sometimes I write the sentence on paper and I show it to them.”

Participant 10: “If the resident cannot hear, I will speak closer, louder and clearer. I usually sit next to
them and speak near their ear.”

Participant 12: “I ask my friend who can speak Madura, and ask him to translate what Mrs. S says to me.”

Availability of palliative/EOLC resources

The participants explained the difficulties they encountered in providing palliative care due to
limited resources and lack of available physicians:
Participant 13: “The residents who are deficient in fluids or in pain cannot be infused or administered
the drug intravenously because we have to wait for the physician.”

Participant 2: “Patients who complain of pain are only given oral drugs, such as mefenamic acid,
paracetamol. Other painkiller we do not have.”

All of the participants explain that they refer patients to the other health centres, such as
Puskesmas or hospitals, to overcome the problem of limited resources:
Participant 3: “Older adults who have cancer we will take to the hospital or Puskesmas, to get medication.
But if they need more medication, they will stay at the hospital, and we go there to assist them.”

PAGE 76 j WORKING WITH OLDER PEOPLE j VOL. 24 NO. 1 2020

Discussion
The nurses in this study conflate the terms “palliative care” and “EOLC”. They also appear to
believe that palliative care is only meant for patients with cancer. In Indonesia, the term EOLC is
still not widely used (Effendy et al., 2015; Rochmawati et al., 2016).
Traditionally, palliative care and EOLC are provided to people with cancer in hospice settings, but
now this care needs to be offered more widely and broadly across health care services, including
hospitals, community and nursing homes (WHO, 2011). Palliative care involves controlling
symptoms and slowing the progress of disease. The purpose of palliative care is to ensure that
patients and families have an optimal quality of life (National Consensus Project, 2013).
While EOLC is a part of palliative care that is direct to people at the end of their lives, the main
focus of EOLC is to help patients die peacefully, with as little pain as possible, and with dignity
( Jennings et al., 2018).
In our study, only two nurses had attended palliative care training. It is vital that nurses receive
regular training from professionally trained staff. The WHO recommends strategies to overcome
knowledge barriers with a three-level training: basic, advanced, and specialist. In Indonesia,
most medical schools still do not offer palliative care modules (Rochmawati et al., 2016).
A good knowledge by nurses of palliative and EOLC can improve quality of health services
provided to clients. Quality palliative care requires medical and technical knowledge,
experience of palliative care, professional and personal self-confidence when caring for dying
patients (Pennbrant et al., 2015). The strategy adopted by nurses in this study was to look for
information independently, via the internet. However, this strategy is not enough. The
government needs to integrate palliative and EOLC in nursing education, starting from the
diploma level. Nursing education institutions need to offer modules to prepare staff to look after
older adults at the end of their lives.
Communication is an important aspect of palliative/EOLC (Carter et al., 2017). This study shows
that one of the barriers to providing good palliative care is inadequate communication.
Communication consists of interaction, discussion, and consultation on a daily activity. The
residents with hearing impairment and an inability to express themselves fully and clearly were
perceived by the nurses as presenting a barrier to communication. These barriers are not only
experienced by nurses but also by families who care for older adults at EOL (Indarwati et al.,
2017). The terminal phase of dementia and hearing loss create barriers to effective
communication. People who experience dementia often have difficulty expressing their need
(Carter et al., 2017). A strategy to reduce communication barriers in this study was to change
communication method. In line with other studied, nurses were found to use non-verbal language
to communicate with patients who are unable to speak (Dithole et al., 2016).
In addition, language difference between nurses and residents was also found to be an obstacle
in communicating with older adults. The most common languages in Surabaya are Javanese,
Madura, and Indonesian. Language differences can reduce closeness between patients and
medical personnel. So patients cannot talk freely about what they feel and experience ( Jennings
et al., 2018). The strategy used by participants in this study is to collaborate with other nurses or
senior nurses who understand the local language who can then act as interpreters.
Communication skills require experience in talking with patients about treatment and
pathophysiology of the disease. The quality of communication with patients depends on the
nurse-patient relationship (Pennbrant et al., 2015). Senior nurses have more experience in
communicating so it is generally easier to establish good communication with patients.
On theme of the availability of palliative/EOLC facilities, participants explained that there was no
physician on standby in nursing homes at all times. Similar conditions occur in other nursing
homes. Most nursing homes in Surabaya do not have a permanent physician on duty. This
condition is certainly very difficult because nurses are not allowed to carry out certain procedures.
Health workers trained in palliative care are concentrated in two major cities in Indonesia,
Surabaya and Jakarta. This creates a challenge in the dissemination of information and palliative
care services (Rochmawati et al., 2016). This condition can lead to barriers to accessing palliative
care/EOLC for older adults. Therefore, the government needs to consider a more balanced
distribution of nurses and doctors in each region, and establish collaboration between hospitals,

VOL. 24 NO. 1 2020 j WORKING WITH OLDER PEOPLE j PAGE 77

 Puskesmas, community centres, and nursing homes to facilitate transfer of knowledge about
palliative care/EOLC.
Some participants stated that the stock of drugs for residents provided at the nursing home was
limited to oral drugs. The medicines available at nursing home were vitamins, painkillers and antifever
drugs, antacids, influenza drugs, drugs for asthma, cough, topical antibacterials, eye drops, etc.
So far, medical devices available in nursing homes are limited to wound care devices, oxygen tanks
and nebulisers. The medical devices were inadequate in providing palliative and EOLC services to
residents. Nurses need to be able to provide the necessary actions to help residents achieve a
dignified death, such as giving fluids for dehydration, giving anti-pain drugs, giving oxygen if
shortness of breath occurs, and nutrition according to the patient’s condition, as well as other drugs
to reduce symptoms (Kementerian Kesehatan Republik Indonesia, 2015).

Conclusion
This study has highlighted that, within the Indonesian context, nurses working in nursing homes
are faced with barriers in providing optimal palliative care and EOLC to older adults. The main
barriers consist in lack of sufficient and adequate knowledge about both palliative care and
EOLC. Communication barriers and insufficient availability of facilities, including physicians, drugs
and medical devices are other barriers. In order for palliative services to be implemented
effectively, there is a need bot clearer and better policies from the government that can assist
both doctors and nurses in improving themselves. Adequate facilities and equipment are also
badly needed.
Education and training for nurses can be given across their working life span. Continuous training
is not only recommended for nurses in hospitals but also nurses in nursing homes. Palliative care
and subjects relating to the end of life must be integrated into nursing education since diploma
level, coupled with modules based on the needs of clients in nursing homes.
Government plays an important role in the equitable distribution of health workers who have
adequate competence, especially in the nursing home. Health workers who have expertise in
palliative care are needed not only in big cities, but also throughout Indonesia. The government
must encourage interdisciplinary cooperation between hospitals, health centres and local
communities, with the aim of increasing knowledge and skills in palliative care/EOLC.

Limitation of study
The nursing home chosen for this study is the only nursing home in Surabaya that managed by
professional nurses. This study only involved nurses in public nursing homes and the lack of
resources typical of public institutions might be a factor in the findings. However, the authors feel
that this study is still valuable in understanding how to better cater for the need of older people
who have reached the end of their lives, most certainly in Indonesia but also, possibly, in other
similar socioeconomic contexts.

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Corresponding author
Rista Fauziningtyas can be contacted at: ristafauzinigtyas@fkp.unair.ac.id

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