Nurse Media Journal of Nursing, 10(3), 2020, 260-274

Available online at http://ejournal.undip.ac.id/index.php/medianers

DOI: 10.14710/nmjn.v10i3.31302

Critical Care Nurses’ Experiences of End-of-Life Care: A

Qualitative Study
Reni Sulung Utami1, Ahmat Pujianto2, Dody Setyawan1, Elsa Naviati1, Nana Rochana1
1
Department of Nursing, Faculty of Medicine, Universitas Diponegoro, Semarang, Indonesia,
2
Department of Nursing, Faculty of Health Sciences, Universitas Borneo Tarakan, Indonesia
Corresponding Author: Reni Sulung Utami (reni.sulung@fk.undip.ac.id)

Received: 30 June 2020 Revised: 7 November 2020 Accepted: 1 December 2020

ABSTRACT

Background: Patients admitted to the intensive care unit (ICU) may face terminal illness
situations, which may lead to death. In this case, the role of critical care nurses shifts from
life-sustaining to end-of-life care (EOLC). Nurses’ involvement in EOLC varies between
countries, even in one country due to differences in religion, culture, organization, laws,
cases and patient quality. In Indonesia, research on EOLC in ICU has not been carried
out.
Purpose: This study aimed to explore the experiences of critical care nurses in providing
EOLC.
Methods: A qualitative study with a phenomenological approach was conducted. Ten
critical care nurses having the experiences of caring for dying patients were recruited
through a purposive sampling technique for in-depth interviews. Manual content analysis
was used to identify themes.
Results: The results of the study found five themes, including the challenge of
communication with the family, support for the family, support for the patient, discussion
and decision making, and nurses’ emotions.
Conclusion: Most of EOLC provided by critical care nurses was focused on the family.
They had some challenges in communication and decision making. Nurses need to get
training and education about how to care for patients towards the end of life.

Keywords: Critical care nurse; end of life care; experience; intensive care unit

How to Cite: Utami, R. S., Pujianto, A., Setyawan, D., Naviati, E., & Rochana, N. (2020).
Critical care nurses’ experiences of end-of-life care: A qualitative study. Nurse Media
Journal of Nursing, 10(3), 260-274. doi:10.14710/nmjn.v10i3.31302
Permalink/DOI: https://doi.org/10.14710/nmjn.v10i3.31302

BACKGROUND
Death is a common occurrence in the intensive care unit (ICU) due to the patient’s poor
condition. Traditionally, the mortality rate of critically ill patients in the ICU is the highest
compared to the mortality rate in any other wards of a hospital. A study showed the
average ICU mortality rates worldwide were 16.2% (Vincent et al., 2014). These deaths
occur either anticipated and unexpected. In this situation, the role of critical care nurse
shifts from providing actions to maintain life to end-of-life care (EOLC) (Espinosa,

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 Nurse Media Journal of Nursing, 10(3), 2020, 261

Young, Symes, Haile, & Walsh, 2010). Thus, knowledge of end-of-life care is highly
recommended for health care providers in ICU.

According to World Health Organization (WHO), EOLC aims to improve the quality of
life of patients and families by helping them to overcome various physical, psychological,
social and spiritual problems. Implementation of quality EOLC in the intensive care unit
(ICU) can be very challenging considering the focus of service in the ICU is to maintain
life (Griffiths, 2019). The other studies also address some challenges in implementing
EOLC in the ICU, such as inadequate experience and knowledge to provide EOLC,
situational conflict to determine the best treatment of EOLC (Kim et al., 2019),
difficulties in communication and decision making, and unrealistic family expectation
(Brooks, Manias, & Nicholson, 2017).

The practice of EOLC in the ICU varies significantly between countries. Variability is
also found within countries and between intensivists within hospitals. Differences in
religion, law, culture, organization, severity of illness, and complexity of cases, as well
as the patient’s prognosis and quality of life, are believed to play a role in creating this
variability (DeCato et al., 2013; Muni, Engelberg, Treece, Dotolo, & Randall, 2011;
Ranse, Yates, & Coyer, 2016a). It is supported by Kim et al. (2019)’s study claiming that
hospital policy and environmental constraints have become some hindrances in the
practice of EOLC in Korea. Meanwhile, Brooks et al. (2017) point out that culture,
collaboration, and communication are important to yield safe and high quality EOLC in
Australia. The latter researchers also recommend to develop EOL care leader and patient
support coordinators with nursing and/or medical background.

Nurses have an important position in providing quality EOLC (Zomorodi & Lynn, 2010).
Nurses can be a resource and support for patients and families. Nurses provide guidance
for them confronting difficult decisions and adapting to painful realities. King and
Thomas (2013) state that nurses accept the reality of death and show a strong commitment
to making death as comfortable as possible, more peaceful and dignified. However,
providing the best care at the end-of-life is a challenge for them (Coombs, Addington-
Hall, & Long-Sutehall, 2012; Griffiths, 2019). EOLC processes expose nurses to human
suffering and miserable situations, thus creating anxiety and uncertainty (Peters et al.,
2013) as well as physical and emotional exhaustion (Ozga, Woźniak, & Gurowiec, 2020;
Ryan & Seymour, 2013).

Nurses’ education and experiences related to EOLC will have an impact on the
application of end-of-life practices. A study mentioned the importance of nurses’
experiences in gaining knowledge to handle end-of-life situations (Ranse, Yates, &
Coyer, 2016b). This knowledge helps them in professional activities for handling difficult
situations when caring for dying patients. However, lacking of experience and knowledge
of nurses in dealing with EOLC results in negative expressed feelings like sorrow, guilt,
regret, and even numbness (Kim et al., 2019).

Research on EOLC has been carried out in many countries and has been identified as a
research priority in an international Delphi study (Blackwood, Albarran, & Latour, 2011).
However, up to now, this topic is still rarely carried out in Indonesia. Several studies have

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 Nurse Media Journal of Nursing, 10(3), 2020, 262

been done (Fitriyani, Juniarto, & Utami, 2018; Rochmawati, Wiechula, & Cameron,
2018; Wessner, 2018), yet the focus is more on the family and religion in palliative care.
Only one study was found to explore nurse’s experience in carrying out EOLC in West
Java (Safitri, Trisyani, & Iskandar, 2017) though its results remain inadequate to describe
Indonesian critical nurses’ experiences providing EOLC within broad literature.
Enriching literature to get comprehensive understanding of Indonesian critical nurses’
experience related to EOLC is necessarily needed by conducting more studies in this area.
Therefore, studies on different cultures within Indonesian context should be done.

PURPOSE
This study aimed to explore the experiences of critical care nurses in providing EOLC.

METHODS
Research design and setting
The present research was a qualitative study with a phenomenological descriptive design.
Phenomenology was considered ideal for this study because it enables researchers to
understand the lived experiences of the human being in the context of their world (Polit
& Beck, 2017). The phenomenon explored in this study was the critical nurses’ lived
experience in performing EOLC. This research was carried out in the ICU and Pediatric
Intensive Care Unit (PICU) of two public hospitals in the province of Central Java,
Indonesia, at the end of 2018. In order to uncover the phenomenon, after the research
design was conveyed and the research setting was described, the researchers then
conducted some systematic steps, such as participant recruitment, data collection and
their storage, data analysis, and ensuring trustworthiness (Polit & Beck, 2017).

Participants and sampling

A purposive sampling technique was used to recruit ten nurses from ICU/ PICU who met
the inclusion and exclusion criteria. Criteria for inclusion of participants in this study
were nurses working in ICU/PICU for at least one year, permanent employees and had
experiences in caring for patients with end-of-life conditions. The recruitment of
participants was done after ethical clearance and research permits from two hospitals were
obtained. The researchers approached and delivered information to the head nurses at the
research location about the objectives and the research procedures. The researchers asked
them for help to obtain data on nurses in their units to identify potential participants.
Together with the head nurses, the researchers identified potential nurses as participants
based on established inclusion and exclusion criteria. Involving the head nurses was done
as they in nature had a good view and consideration about the duty and working
experience of their nurses according to the inclusion and exclusion criteria. After
obtaining the names of the potential participants and their contact numbers, only ten
participants from the list were approached and contacted for further interviews. This
process did not involve the head nurses to maintain participants’ privacy.

Data collection
In-depth interviews using semi-structured question sheets were used as data collection
methods in this study. The interview questions were developed from the literature review

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and consulted with clinical experts. Participants were invited to take part in interviews by
phone. After they agreed to participate in the interview, both parties made a contract on
where and when the interviews were carried out at the participant’s convenience. This
semi-structured interview was conducted for approximately 40-50 minutes in a quiet,
comfortable, and closed room and was recorded using a digital recorder. Each participant
was interviewed more than once. The interview began with the introduction, signing
informed consents, and some general questions. Some open-ended questions were then
asked to gain their experiences, like “Could you tell me your experience in looking after
the end-of-life patients and their families in this unit?” and “What do you feel when you
deal with the patients in their end-of-life and their families?”. Some probing questions
were asked to clarify or to seek more information about participants’ responses, such as
“What do you mean by difficulty here?” and “Could you tell me more about this
emotion?”. Observational field notes/ memos were written throughout the interview
process. After all questions were asked, the researchers thanked the participants and asked
for their oral consent for a follow-up interview. Each interview record was then labeled
in the form of a participant identification number, interview time, and sequence of
interviews and field notes during the interview. Furthermore, the recording was
transferred to three duplicate audio files stored on a computer, external hard disk (flash
disk) and CD before being transcribed verbatim. The stored files on the computer and
flash disk were locked for confidentiality and security and only the reseachers knew the
password. The interview and participant recruitment were stopped after 10 interviews to
the point of data saturation.

Data analysis
Data collected in this study were analyzed using manual content analysis which was
divided into four stages (Polit & Beck, 2017). The first stage was the process of verbatim
recording transcripts and the elimination of the participant’s self-identity. The second
stage was the process of reading transcripts accompanied by listening to recordings
repeatedly to get general conclusions. This process was important to get holistic sense
(the gestalt) and overall understanding of the participant’s information. The third stage
was the process of identifying keywords to produce categories before combining them
into sub-themes and themes and looking for relationships between data using maps and
diagrams. The fourth stage was the process of integration and interpretation of themes
and sub-themes into meaningful descriptions of the phenomena under study.

Data quality
Ensuring validity and trustworthiness was maintained throughout this study. Validity in
term of maintaining the objectivity of the researchers was done through bracketing from
the literature review process to the data analysis. Bracketing prevented the researchers’
personal views and preconceptions from interfering the unique descriptions of the
phenomenon. It also prevented the researchers’ interpretation during data analysis. Prior
knowledge and interpretation were bracketed and written down on memos. Furthermore,
the trustworthiness of this study was ensured by conducting triangulation with the theory
and secondary data (documents, field notes), member checking, peer debriefing, and audit
trail. Member checking was carried out by having follow-up interviews for clarification
and further discussion. However, only four out of ten participants had done the member
checking due to time constraints. Peer debriefing was done through researcher team’s

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meetings to review and discuss the transcripts, keywords, categories, and themes while
audit trail was conducted by collecting and documenting the data systematically so that
the data could be reviewed externally.

Ethical consideration
This research had obtained an ethical clearance prior to the data collection from the Health
Research Ethics Committee (KEPK) of the Faculty of Medicine, Universitas Diponegoro
(No. 250/EC/FK_RSDK/IV/2018), and permissions from two hospitals where this study
was taken place. A statement letter explaining the research and an informed consent letter
as a participant was given to participants before interviews to respect the dignity and the
freedom of the participants and to avoid being coerced into participating in this research.
Participants who agreed to be involved in the study were asked to sign an informed
consent form. Privacy and confidentiality of participants were also maintained in this
study. The use of pseudonyms to identify the participants was done to keep the
confidentiality.

RESULTS
Characteristics of participants
As presented in Table 1, this study involved ten nurses working in the ICU/PICU. A
majority of them were females, aged 41 to 50 years old, graduated from bachelor and
nursing professional degree and had working experiences of two to ten years.

Table 1 Characteristics of participants

Characteristics f(%)
Gender
Male 2 (20)
Female 8 (80)
Age (years)
21-30 1 (10)
31-40 3 (30)
41-50 6 (60)
ICU experience (years)
2-10 6 (60)
11-20 2 (20)
>20 2 (20)
Level of education
DIII 4 (40)
DIV 1 (10)
S1 + Ners 5 (50)

The results of the thematic analysis of nurses’ experiences in providing EOLC to patients
in the ICU revealed five main themes namely the challenges of communication with
family, support for the family, support for the patients, discussion and decision making,
and nurses’ emotions. Each of these themes is presented and illustrated using verbatim
quotes from interviews.

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Theme 1: The challenges of communication with the family

Participants stated that communicating with families with end-of-life conditions has its
own challenges and difficulties. The communication difficulties faced by nurses primarily
are communicating with families who have high expectations, families are still in the
denial stage, and smart-assed families. Higher and lower education does not always
guarantee the ease of communication. The participants’ statements are quoted below:

“The challenge is the family, ... sometimes the family has been informed, but the
family has not been able to accept the patient’s condition ...” (P7)
“I thought that communicating with the family with higher education will be easy;
but it is not; they even need more details... For family who had low education…,
giving knowledge is also difficult. It turns out that education also determines the
standpoint of the other side... So, the family’s response must be meticulous too. It
was also difficult to provide education to people who work in health field as similar
with us…” (P6)
“... The family still hopes that the patient is be able to return; it is difficult to tell
the family that this is hopeless, and they also have difficulty in understanding the
medical terms...” (P9)
“It’s difficult to handle family who acts know it all...; family with a high-income
and higher education... They can understand when they are given explanation, but
there are also some families who are pretentious to understand... They did not fully
understand... However, there are also some families that are highly educated but it
is difficult to talk to them. It’s just difficult to explain to them…” (P2)

One participant said that nurses’ ability to communicate significantly determines the
relationship of nurses, both with colleagues and family. Level of education of family
affects the communication techniques that nurses applied.

“...Our ability to communicate determines both partners and family... The level of
education of family varies, so the language we choose determines whether or not
he can accept it. We have to adjust to their level of education so that they can
understand if we use a common imagery. Maybe our techniques for conveying need
different ways…” (P10)

The existence of a case conference that decides an agreement between the health team
regarding what the family will convey is perceived to be very helpful for the participants
in communicating with the family. This was stated by the participants as below:

“So, nurses and physicians convey their feelings and voices related to patient care
in the case conference and then a decision will be made... We talk to the family
based on the script that we agreed upon, for example A to A or B to B. This
conference is very helpful for us…” (P2)

Theme 2: Support for families

This theme emphasizes the form of support provided by nurses to families of patients
with end of life care plans. This support included giving encouragement, trying to always

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be there for the family, and inviting families to chat and pray together. This was stated by
the participants as below:

“So, we can only give encouragement to his family..., and providing understanding
to his family in order to accept the reality... The most important thing for me to
support him is being close to him, accompanying him, and inviting him to discuss
about his son problems so he can accept any circumstances related to his son...
Basically, communication is the key to being close with him... Do not leave him
alone...; invite him to prayer together as well...” (P8)
“...we give understanding that the patient cannot be helped and we have tried to
help patient optimally..., but the patient did not want to be helped anymore... We
explain it to both parents even though it was in sad situation... At least, we
encourage them to talk to reduce their grief rather than only said to them that their
child is dead and we are busy taking care the deceased... It looks like we left them
alone... If we ask them to talk, they will not feel sad alone.” (P9)

Another form of support provided by nurses is to provide opportunities for families to

always be close to patients. Families are allowed to be near the patient even outside the
visiting hours, but this applies only to the nuclear family, for example the patient’s
parents.

“… two family members are allowed to wait in the bedside of a dying patient… We
gave them the opportunity even though it was out of visiting hours…” (P3)
“...those conditions sometimes trigger our social spirit. We allow the caregiver sit
near the patient’s bed even though it was not the visiting hours. All curtains were
closed. We also often accompany them so that patients can be accompanied
continuously.” (P5)
“He was allowed to pray together with his family’s member or his religious leader...
He is permitted to approach his child to pray until his child death.” (P8)

Theme 3: Support to patients

Support is given to patients as an effort to raise comfort to patients such as avoiding
actions that cause pain, providing pain medication and providing personal hygiene care.
Almost all participants gave spiritual support to patients, either directly or indirectly, for
example, listening to spiritual texts (e.g., the Holy Quran recitation), guiding prayers, and
facilitating spiritual guidance by calling religious leader as needed.

“…Improve the quality of life of patients by providing a sense of comfort, for

example by reducing pain ...” (P7)
“... if it has been stated end-of-life, we are more focus on patient comfort, for
example, performing personal hygiene, positioning, and persuading the physician
to avoid taking unnecessary blood samples... That’s the focus of nursing care...”
(P9)
“...we give analgesic to make the patient feel comfortable, perform maximal wound
care, nutrition is also maximized. We support family in order to continue in
providing support for patient” (P6)

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“For Moslem patients, usually while bathing, they recite Al Fatihah or healing
prayers. If the patients are still conscious, we encourage them to recite Al Fatihah...
When I give injection, I ask them to pray... Hopefully later, through this drug, the
God can give the cure” (P2)
“For spiritual care, it’s rather difficult if the patient is not fully conscious...; at least
by playing Al Quran recitation.” (P6)
“...for patients and families... so we offer it to the family ... do they need spiritual
support/guidance?... in our hospital there are Islamic and Christian spiritual
facilities ... if necessary we will facilitate ...” (P1)

Theme 4: Discussion and decision making

Majority of participants stated that decisions related to care provided to patients were
made based on the results of the discussion between family and the multidisciplinary
team; yet the role of physicians is dominant compared to that of nurses. Nurses tend to
follow the doctor’s instructions.

“...for cases of long-stay patient, we usually have discussions with family and team
such as anesthetist, neurologist, pulmonologist, and others. We sit and discuss
together then we made a decision...” (P5)
“...if patients stay for more than 10 days or more than 2 weeks... We always carry
out case conferences... the result will be informed to the family for further follow-
up... for long stay patients or patients with complicated diagnosis.” (P2)
“The nurse is the first one who knows for sure... We share it first to the doctor...
later the doctor will educate the family... Even though we can do it, but we always
share with the doctor... We didn't make decisions... It is because in the informed
consent, the doctor is the one who gives the signature... but the doctor knew the
issue from the nurse...” (P2)
“If the patient has been declared dying, we will wait until the time is up... then what
the advice of the doctor? If for example, he has bradycardia/ asystole...., there is no
hope anymore and then the doctor says it is finished... Yeah it means finished.” (P8)

However, there were some participants who have a courage to argue with doctors
regarding patient care. That happen if they had a strong justification.

“...actually, I disagree, but this is a team... So I give help too... We had an

argument... our last strategy was calling the family...” (P9)
“... actually, it doesn't make any difference, even though it is end of life... We still
support the respiration, their nutrition and others..., but these supports depend on
the physician... but we can propose, for example giving analgesia... We can propose
it to the doctor because it’s his area, not ours. But still we can propose it with a note
if there is a reason.” (P10)

Theme 5: Nurses’ emotions

Participants said that caring patients of end-of-life reminded them of death. Participants
conveyed sympathy and empathy to both patients and families. Participants could feel the
sorrow of the family who lost their member and even cried.

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“... if saw the patient is still productive and the disease is not too complicated, there
is such a pity feeling... Why not helping up to the maximum first... Once there was
a family that is given up; it might be because of the cost or something. We always
explain that this patient can be improved... why did not withhold?... But, if the
patient is on end stage…for example cancer stage 4, elderly with stroke..., we just
remember about dies; we will also experience death someday….” (P2)
“The most imprint is when they have a son...; to have a son is already difficult or
has many times but miscarriage, and this is the only child he has... It continues to
imprint in our heart...feel a pity... extraordinary empathy... Because we are also a
human and a woman can feel how she has a difficulty in having child but God does
not grant it” (P8)
“... sometimes, when the family has been told that their child is dying... I am
emotionally crying too...” (P10)

One participant said the death rate in her ward was quite high and this caused fears on her
that it will reduce her empathy due to seeing patients die so often.

“… I am afraid that my heart will harden… I am afraid that I am less sensitive to

people’s sadness because I often see people die… When the patient dies, the family
cries and we can still laugh…” (P4)

DISCUSSION
This study aimed to explore the nurses’ experiences in providing EOLC in the ICU. The
findings showed that nurses had several challenges in providing the care. Moreover, most
of EOLC provided by nurses was focused on family. Some studies state that EOLC in the
ICU is challenging (Kisorio & Langley, 2016; Ozga et al., 2020). Ozga et al (2020)
identified three categories of potential barriers in providing EOLC, namely (1) barriers
attributable to the hospital, (2) barriers related to the patient’s family, and (3) barriers
related to the ICU personnel providing direct EOLC.

In this study, participants reported some challenges and difficulties when communicating
with the family of dying patients. These results are consistent with the results of previous
studies (Aslakson et al., 2012; Crump, Schaffer, & Schulte, 2010; Muni et al., 2011; Ozga
et al., 2020). There are several factors that can create challenges and have an impact on
the quality and quantity of communication between doctors, patients, and families at the
end-of-life in the ICU. These factors include communication skills of doctors and nurses,
lack of time of doctors/nurses, the ability of families to understand the information
delivered, cultural disparities and the emotional condition of the family (Aslakson et al.,
2012; Jin, 2013; Levin, Moreno, Silvester, & Kissane, 2010). All these factors were stated
by participants in this study. Nurses in this study convey difficulties when communicating
with families who are still in the denial phase. Denial is a common coping mechanism for
those facing a terminal illness. In this stage, families start to deny bad news that is given.
They believed that the information is wrong and there must have been a mistake. In
dealing with this situation, nurses must respect the family’s essentially protective nature
of it. Nurses need to seek first to understand and validate before attempting to change
anything. This will produce far more therapeutic benefits than trying to change or override
such defenses. Encouraging positive aspects of the family and building them as strengths

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may be more beneficial than confrontation and criticism. Nurses need to master these
skills.

The complexity of information, family’s lack of capacity in understanding information,

and the uncertainty of critical patient conditions can make family members feel depressed
and frustrated (Carlson, Spain, Muhtadie, McDade-Montez, & Macia, 2015). This
emotional disturbance can interfere with cognitive processes and affect the ability of
families to understand, remember, and search for complex information about the
condition and prognosis of their loved ones (Morgado & Cerqueira, 2018; Sandi, 2013).
In 2015, Mathew, Azariah, George, and Grewal reported that 71% of families have a poor
understanding of the diagnosis, treatment, and prognosis of patients. Family’s
understanding will get worse when the family only interacts with the healthcare staff for
less than 10 minutes.

Nurses spent the most amount of their time with patients and families compared to other
health care professionals; thus, it gave nurses a great opportunity to build trust and give
comfort care. Nevertheless, they still feel they are not sufficiently prepared to care for
dying patients and their families (Espinosa et al., 2010). Nurses who are inexperienced
and not ready to provide care can experience doubts about what should be done and, in
the end, do nothing (Kisorio & Langley, 2016). In this study, the inexperienced nurses
sought for help from their senior experienced nurses.

Families feel the presence of nurses as comforting hugs that sustain them before, during
and after the death of the patient (Williams, Lewis, Burgio, & Goode, 2012). In this study,
some participants provide time for families to accompany them and listen to their feelings
and thoughts even though it was not always possible. Being present allow nurses to
experience the families’ lives, sensing their milieu and their situation. As a result, it could
enhance their empathy and compassionate behavior to others. Indeed, for some nurses,
this practice is not easy task for them because they do not feel confident from their lack
of knowledge and experience. In Indonesia, training and nursing curriculum related to
end of life care is likely to be inadequate. This issue also found in other settings (Cavaye
& Watts, 2010).

To ensure patient comfort in the dying process, nurses provide spiritual care and basic
nursing care. In this study, nurses encouraged and guided patients and their families to
pray and facilitated them in inviting a religious leader. Nurses also allowed them to bring
their own spiritual leader. Spiritual care plays a vital role in preparing for a peaceful death
and is an important aspect of holistic nursing care (Witt Sherman & Free, 2015). Spiritual
care is not only important for family, but also for family member and medical staff. The
positive effects of spiritual care have been reported (Chen, Lin, Yan, Wu, & Hu, 2018;
Willemse et al., 2020; Zhang, Nilsson, & Prigerson, 2013). A recent ethnographic study
in Indonesia found that spirituality/religiosity is very important in the daily lives of
patients, family members and healthcare staff (Rochmawati et al., 2018). Even though
spiritual care is viewed as an important dimension of end-of-life care, its implementation
is still inadequate (Balboni et al., 2013). This phenomenon may be caused by the lack of
training and education.

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End-of-life decision making is a growing need in the ICU, covering a continuum of

treatment possibilities. It has been perceived as complex, difficult and stressful (Pereira,
Fradique, & Hernandez-Marrero, 2018). This study reveals that families are involved in
the decision-making process. In Indonesian culture context, the role of family is strong
and important in patient care. Moreover, discussion involving family is essential because
patient in high vulnerability condition and generally unconscious.

In line with previous research (Flannery, Peters, & Ramjan, 2020; Griffiths, 2019; Kisorio
& Langley, 2016), the role of nurses in making decisions regarding the end-of-life in this
study is still lacking. They still have a tendency to follow doctor’s instructions. This could
happen because end-of-life decision is a medical decision and becomes the responsibility
of physicians. On the other hand, nurses often feel inadequately prepared (Griffiths,
2019). Interprofessional education and collaboration between physician and nurse can
improve future decision-making processes (Flannery et al., 2020).

Nurses are frequently exposed to the care of death and dying patients. This experience
made them aware of their own death (Peters et al., 2013). This is as stated by participants
in this study. Peters et al (2013) reveals that exposure to death often causes anxiety in
nurses. Senior nurses with more experiences tended to have more positive attitudes
toward death and caring for dying patients, whereas nurses without this experiences had
more negative attitudes (Abu Hasheesh, Abozeid, El-Said, & Alhujaili, 2013). Hinderer
(2012) stated that understanding nurses’ emotions to patient death can help to improve
the quality of care they provided to dying patients and to meet the needs of the nurses
who care for them.

The reactions of participants in this study conveyed sympathy and empathy to both patient
and family. Sympathy was described as a superficial acknowledgment of suffering,
generating a compassionate response that fails to adequately acknowledge the person who
is suffering. In contrast, empathy is an affective response that recognizes and tries to
understand individual suffering through emotional resonance (Sinclair et al., 2017).
Empathy has a positive meaning and more welcomed and valued by patient and families.

This study reveals that caring for the dying patients was challenging emotionally and
psychologically for nurses. These challenges must be addressed. Nurses need to enhance
their communication skills and more actively involved in facilitating the end-of-life
decision making process. Education and training about EOLC are imperative for
providing the best quality of EOLC. In addition, a course in palliative care is suggested
to be mandatory in nursing education.

A few limitations of this study should be acknowledged. Some participants were

interviewed at the ICU because they could not leave the ward and refused to meet after
working hours. As a result, the interview process is sometimes interrupted by the activities
of other nurses in the room. Member checking was not carried out to all participants due
to time constraints resulting in possible researchers’ bias though bracketing and peer
debriefing had been done.

CONCLUSION

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 Nurse Media Journal of Nursing, 10(3), 2020, 271

This study showed five themes, namely the challenges of communication with family,
support to the family, support to the patients, discussion and decision making, and nurses’
emotions. Nurses had several challenges and difficulties in communicating with the
family of dying patients. Moreover, EOLC provided by nurses was more focused on
family involvement. Nurses were still not optimal in providing care for patients in end-
of- life condition. Nurses need to get training and education about how to care for patients
towards the end-of-life. Further research needs to be carried out to explore nurses’
communication experiences related to EOLC.

ACKNOWLEDGMENT
We gratefully thank the Faculty of Medicine, Universitas Diponegoro for financial
support.

CONFLICT OF INTEREST
The authors declare that they have no conflict of interests

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