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European Journal of Oncology Nursing xxx (2015) 1e8

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European Journal of Oncology Nursing


journal homepage: www.elsevier.com/locate/ejon

Caring for dying cancer patients in the Chinese cultural context: A


qualitative study from the perspectives of physicians and nurses
Fengqi Dong*, Ruishuang Zheng, Xuelei Chen, Yanhui Wang, Hongyuan Zhou, Rong Sun
Tianjin Medical University Cancer Institute and Hospital, Tianjin, China

a r t i c l e i n f o a b s t r a c t

Article history: Objective: To explore the experiences of Chinese physicians and nurses who care for dying cancer pa-
Received 8 May 2015 tients in their practical work.
Received in revised form Method: This was a qualitative study using semi-structured face-to-face interviews. Fifteen physicians
25 September 2015
and 22 nurses were recruited from a cancer center in mainland China. The data were analyzed by
Accepted 9 October 2015
qualitative thematic analysis.
Results: Disclosure of information on death and cancer to dying cancer patients is taboo in traditional
Keywords:
Chinese culture, which greatly decreases the physicians' and nurses' effective communication with dying
Cancer
Death
patients in end-of-life (EOL) care. Both physicians and nurses described strong ambitions to give dying
Dying cancer patients high-quality care, and they emphasized the importance of maintaining dying patients'
End-of-life hopes in the death-denying cultural context. However, the nurses were more concerned with dying
Experience patients' physical comfort and wish fulfillment, while the physicians placed greatest emphasis on pa-
Nurses tients' rights and symptom management. Both physicians and nurses suffered whilst also benefitting
Physicians from taking care of dying patients which helped with their personal growth and allowed greater insight
Qualitative research into themselves and their clinical practice. Our results also indicated that Chinese physicians and nurses
require improved methods of communication on EOL care, as well as needing more support to provide
quality EOL care.
Conclusion: Chinese physicians and nurses experience a challenge when caring for dying cancer patients
in the Chinese cultural context. Flexible and specific education and training in EOL cancer care are
required to meet the needs of Chinese physicians and nurses at the cancer center studied.
© 2015 Elsevier Ltd. All rights reserved.

1. Introduction professionals (Kendall, 2006; Penson et al., 2000). They are under
pressure to return to an environment where they must care for
Health professionals working in cancer centers are often con- other cancer patients who may also be critically ill and expect an
fronted with dying patients and bereaved family members. In their imminent death. Researchers (Lange et al., 2008; Peterson et al.,
role as supporters, they are the ones to facilitate a dignified, 2010) have stated that health professionals with better skills and
comfortable death that honors patient and family choices, no more experience tend to provide good-quality EOL care and
matter where the setting of death occurs. However, caring for dying establish meaningful and supportive relationships with patients
cancer patients and experiencing patient death can stir myriad and family members, leading to improved patient outcomes and
emotions and thoughts within them, such as raising doubts about satisfaction of patients and their families.
their competency, feelings of guilt, loss or injury from failure to Cultural factors take an important role in the practice of medical
meet their expectations of care (Cevik and Kav, 2013; Gibbins et al., issues. To a large extent, people's beliefs and attitudes about health
2011; Penson et al., 2000; Wang et al., 2004a). and disease are influenced or determined by their traditional cul-
The presence of dying cancer patients has been thought to be a ture (Ekblad et al., 2000). Chinese culture has a particular
significant contributor to burnout and turnover of health perspective on dying and death developed over five millennia due
to the profound influences of Taoism, Confucianism, and Buddhism
(Cui et al., 2011; Hsu et al., 2009). Confucianism, which is a vital
* Corresponding author. aspect of non-disclosure in China, to some extent greatly influences
E-mail address: dfq3090@126.com (F. Dong). Chinese medical ethics, and it tends to advocate a beneficence-

http://dx.doi.org/10.1016/j.ejon.2015.10.003
1462-3889/© 2015 Elsevier Ltd. All rights reserved.

Please cite this article in press as: Dong, F., et al., Caring for dying cancer patients in the Chinese cultural context: A qualitative study from the
perspectives of physicians and nurses, European Journal of Oncology Nursing (2015), http://dx.doi.org/10.1016/j.ejon.2015.10.003
2 F. Dong et al. / European Journal of Oncology Nursing xxx (2015) 1e8

oriented stance (Jiang et al., 2007). Even for contemporary Chinese, 2.1. Sample
including health professionals, talking about death and dying is
very challenging (Dickinson et al., 2008; Wang et al., 2004b; Xu This descriptive qualitative research was conducted in a 2400-
et al., 2006), especially for those who are dying; discussion about bed cancer hospital in northern mainland China. Purposive sam-
death is avoided as such talk may hasten the pace of their dying pling (Merriam, 2009) was used to include participants with a va-
process and incur bad luck (Hsu et al., 2009; Wang et al., 2004a). riety of professional titles, ages, and years of clinical experience in
Compared to Chinese culture, Westerners are better prepared to different departments of the hospital during May to October 2014.
face death, and talking about death with dying patients and making To be eligible to participate in this study, the participants had to
necessary preparation to deal with death are encouraged in have worked with and been exposed to dying cancer patients for at
Western cultures where the majority of people identify themselves least half a year; to be more than 18 years old; to be willing to
as Christians (Xu, 2007). participate; and to be a Chinese speaker. Fifteen physicians
The perception of cancer is also influenced by culture. There is a participated in this study, with a mean age of 34.56 years
common belief in Chinese societies that cancer diagnosis is (SD ¼ 8.50); the youngest was 27 years old, and the oldest was 54.
regarded as a metaphor for death because of its high mortality The mean number of years of clinical experience of the physicians
rate. Due to the family-oriented cultural context (Lu et al., 2011; was 8.31 (SD ¼ 7.71); the maximum experience was 25 years, and
Olsen et al., 2010), Chinese physicians and nurses are required to the minimum was 1 year. Twenty-two nurses were also recruited.
give priority to families who decide whether or not to tell the The mean age of the nurses was 29.34 years (SD ¼ 6.63); the
patients the terminal diagnosis (Sun et al., 2011; Wong and Chan, youngest was 24 years old, and the oldest was 49. The mean
2007). The family members usually exclude telling the patient the number of years of clinical experience of the nurses was 7.47
truth, even when they are at the EOL stages, which is considered (SD ¼ 6.52); the maximum length of clinical experience was 27
by their families as an good way to protect them emotionally years, and the minimum was 0.5 years.
(Wang et al., 2004b; Xu et al., 2006). However, some dying pa-
tients may know very well what their health condition is, even 2.2. Data collection
though they are kept uninformed (Zeng et al., 2008). In fact, some
Chinese physicians preferred disclosure to dying patients, as they A semi-structured face-to-face interview guide was developed
thought such disclosure may allow dying patients to resolve un- based on the purpose of the study; this was pretested with two
finished business and manage the last days of their lives (Jiang nurses and two physicians to ensure the questions were under-
et al., 2007). On the other hand, Chinese cancer patients’ attitude standable and answerable, on the basis of which we adapted this
toward truth-telling was greatly influenced by their disease stage; interview guide again. Prior to the one-to-one interviews, partici-
fewer patients wanted to know their diagnosis during terminal pants completed a demographic form, were made aware of the
stages than early stages of cancer (Jiang et al., 2007). Consequently, aims of the study, and provided written information consent. They
Chinese health professionals are in a dilemma whether terminal were guaranteed that they could withdraw from the study at any
cancer information should or should not be disclosed to dying time; the study was anonymous, and identifying factors were
patients, and how to deliver quality EOL care to facilitate a good removed from the data. All the material and information was
death for the patients. locked by the first researcher in a cabinet and accessed only by the
Researchers indicate that culture imposes certain limitations on researchers.
health professionals' options and behaviors when caring for dying The interviews, ranging in length from 30 to 60 min, were car-
patients (Clark, 2012; Mystakidou et al., 2004). Chinese physicians' ried out at a site of each participant's choosing by a single
and nurses' experience of caring for dying cancer patients may have researcher (R.S. Zheng) who had received training in qualitative
different implications and significance for each (Schlairet, 2009; Xu research. Each participant was asked to recount their feelings and
et al., 2006; Zhai and Dai, 2006). To our knowledge, no study has personal experiences regarding caring for dying cancer patients.
simultaneously involved Chinese physicians and nurses in Interview questions included ‘How do you feel when you are caring
exploring the experiences of caring for dying cancer patients in a for a dying cancer patient?’, ‘What are your thoughts and feelings
Chinese traditional cultural context. Thus, a public discussion is when doing that?’, ‘What do you think of quality EOL care?’, ‘What
essential to develop a better understanding of the points of view of would you do for a dying cancer patient?’ and ‘How does the
Chinese physicians and nurses, and also to learn how to integrate experience of caring for dying cancer patients impact you?’ Probes
these perspectives. were used to encourage participants to elaborate on their experi-
The purpose of this study was to identify Chinese physicians' ences: for example, “Could you tell me more about that?”, “What do
and nurses' perceptions of caring for dying cancer patients who are you mean by saying that?” etc.
in their final days or hours in Chinese cultural contexts, with the
objective of illuminating similarities and differences in experiences 2.3. Data analysis
and helping to develop effective training.
Interviews were digitally recorded and transcribed verbatim.
2. Methods Data analysis was done independently by the first and second au-
thors, who followed the standard methods for qualitative thematic
A qualitative research design was chosen for this study as analysis. Data analysis began with the first interview and was done
qualitative study is considered to be an ideal way of yielding in- in conjunction with data collection (Merriam, 2009). The method
formation and exploring a specific phenomenon; it also helps to used for analyzing qualitative data was Colaizzi's approach
gain a full view of the phenomenon under research. This study was (Colaizzi, 1978): (1) to read the transcripts repeatedly while
based on the phenomenology study approach (Merriam, 2009) and listening to the digital recordings; (2) to extract essential elements
was presented according to the Consolidated Criteria for Reporting and meaningful statements from the transcripts; (3) to code the
Qualitative Research (COREQ) checklist for qualitative research same elements and statements; (4) to arrange the formulated
(Tong et al., 2007). Research ethics approval was gained from the meanings into clusters of themes; (5) to state detailed descriptions
Human Research Ethnics Board of Tianjin Medical University Can- for every extracted theme; (6) to read the themes and the de-
cer Institute and Hospital. scriptions again; (7) to return the transcripts to the participants to

Please cite this article in press as: Dong, F., et al., Caring for dying cancer patients in the Chinese cultural context: A qualitative study from the
perspectives of physicians and nurses, European Journal of Oncology Nursing (2015), http://dx.doi.org/10.1016/j.ejon.2015.10.003
F. Dong et al. / European Journal of Oncology Nursing xxx (2015) 1e8 3

obtain their views and to be verified. The first and second authors and nurses did their best to foster and maintain dying patients'
compared and determined the final themes together and collabo- hope. However, keeping dying patients' hope within such a cultural
rated when there were differences. Data collection did not cease context was not an easy job. They experienced an ethical dilemma
until no new information was obtained, which indicates data between keeping dying patients' hope and truth; the latter may
saturation has been reached. diminish dying patients' hope. Instead of using the word ‘cancer’
To maximize credibility, the themes and citations were trans- and ‘tumor’ when speaking with patients, the physicians and
lated from Chinese into English by two independent translators. nurses used the word ‘the disease’, which they believed helped to
The two translated versions were compared, analyzed, and modi- maintain the patients' hope even at the EOL stage.
fied by the first and second authors. A bilingual person who was not
“The essential obligation for a physician is to keep their patient’
connected to the research was then asked to translate the English
hope, not to diminish it, depending on which the patients fight the
version back into Chinese. Finally the research team reviewed the
cancer as long as possible, even at the last minute. They still ima-
results and revised some of the English until it was closer in
gine they can be cured, feel safe and be positive towards life and
meaning to the original Chinese.
treatment …. If they know they are dying, they probably lose hope,
feel desperate … I also ask the families to conceal the secret. No
3. Results
matter what the patients ask about their condition, we're not
supposed to let out any bad information.” (D1)
Five main themes emerge from this qualitative research: (1)
strong senses of obligation and crisis; (2) hope and spirit mainte- “They were doing their best to fight with the disease, and how could
nance; (3) improvement of quality of life; (4) promotion of family you tell them they've got advanced cancer? There was not much
function; (5) dilemmas during EOL stage. time left? They might be depressive, gloomy or even committing
suicide, no hope towards life … It's much better to die in hope than
3.1. Strong senses of obligation and crisis live in despair.” (N8)

At the beginning of the interviews, both the physicians and However, deception was reported to be difficult to maintain, and
nurses were asked to describe their feelings and thoughts at the the nurses and physicians identified deficits in non-disclosure.
very moment of their recognizing that a cancer patient was dying. They questioned the effectiveness of hiding cancer diagnoses
As disclosed through their narratives, the physicians and nurses from patients, and provided examples of patients suspecting the
expressed similar views and emphasized the importance of their diagnosis. A few physicians thought dying patients should be told
presence and availability at the patients’ bedside, which they about their health conditions since everyone has his right to know
thought demonstrated their concern to the patients and family about his disease and die without regret.
members.
“It's really difficult to tell a lie as his health condition is worsening
“Their conditions were worsening dramatically … may go away at dramatically. His time is coming. But how could I tell him? It is so
any time. I stayed in the hospital, went to their bedside every ten difficult to deal with that … But we should tell him.” (D2)
minutes, looked at their vital signs, or just let them know I was
there and available at any time … For 24 hours I kept my cell phone
on, so they can reach me at any time. They need us more than ever.” Both the physicians and nurses attributed their cancer informa-
(D5) tion non-disclosure behavior to Chinese traditional culture. They
stated that the lack of belief or faith resulted in dying patients’ fear
and ignorance of death. In order to better tackle this difficult issue,
The physicians and nurses gradually became experienced in
some physicians reported that they tried to seek information and
recognizing a dying patient's imminent death. On noticing one
knowledge about death and its related issues, which they thought
patient was dying, they would have a sense of crisis and pay extra
might help with their understanding of death, and then in turn
attention to him or her. At the same time, they were alert and fully
improve their ability to interpret the death event with their patients.
prepared for attempting resuscitation.
“Few people have religious belief in our country, so when one is
“I go to their wards numerous times, and keep an eye on them. They
diagnosed with cancer and death is coming, most would lose
need much more attention. I can tell that he might die this night or
control over life, no inner sustenance at all, as if death was a
tomorrow, no later than the day after tomorrow. I am under
mysterious issue. They show ignorance, fear, complete rejection …
pressure and have a sense of crisis because it will come very
Neither do I know how to interpret death from a religious stand-
quickly. We should face it with them together.” (N12)
point. I have begun to read some books about death, such as the
Bible, the Buddhist … to find out how to recognize death and
3.2. Hope and spirit maintenance explain it in a common way … just to help my patients and myself
as well.” (D11)
The narratives of this study indicated that the maintenance of
hope was considered to be quite critical in the care of dying pa-
3.2.2. Strengthening inner energy
tients, as hope creates a positive attitude and reduces suffering.
Individual patient's worth as a source of hope was emphasized
That is, living with terminal cancer did not mean living without
by the physicians in this study. That is, it gave dying patients hope
hope for dying patients. The physicians and nurses spontaneously
when their physicians made them feel valuable and cared for. The
expressed, albeit in different terms, the importance of maintaining
physicians also supported their dying patients through physical
dying cancer patients’ hope for life.
contact, which was thought to be an important way to express their
concern. Shaking hands was especially emphasized by the physi-
3.2.1. Death denying and information non-disclosure
cians to convey their support.
The participants clearly described that Chinese traditional death
culture did not allow them to discuss the death event with dying “A physician's hand is just like a life-saving straw, to give them
patients, especially at the terminal stages. Instead, the physicians hope and support. So whenever I went to their bedside, I held their

Please cite this article in press as: Dong, F., et al., Caring for dying cancer patients in the Chinese cultural context: A qualitative study from the
perspectives of physicians and nurses, European Journal of Oncology Nursing (2015), http://dx.doi.org/10.1016/j.ejon.2015.10.003
4 F. Dong et al. / European Journal of Oncology Nursing xxx (2015) 1e8

hands tightly. They might have no strength at all, but I do … By “Spiritual care? No, it's out of my realm of expertise and impractical
shaking hands you tell them you do care about them and they can to me, you know, we're just too busy … But indeed, they must have
rely on you. On the other hand, shaking their hands can help you been in a struggle to find life meaning, something spiritual …” (D8)
read what they were thinking … I just wanted them to know I
would be always there with them.” (D1)
3.3. Improvement of quality of life

How to preserve dying patients' faith or a meaning of life until


3.3.1. Control of physical symptoms
the very end of life was reported by the participants to be quite
All the participants mentioned that minimizing dying cancer
difficult. However, quite surprisingly, an experienced and respected
patients’ suffering at the EOL stage was a core responsibility for
physician might have a more positive influence on the dying pa-
them. When they were asked what was done for dying patients at
tients’ hope for life during the last few days.
this stage, they mentioned that pain management had priority.
“The president of the hospital (an experienced and respected expert
“Good symptom alleviation and optimized quality of life for dying
in the country) came to the dying patients' bedside, and checked
cancer patients is of importance to maintain a life's meaning.
their health condition. His words, even a slim smile had magical
They're in unrelieved pain, so disturbing … Analgesic administra-
power for them, gave them much hope to live. They trusted and
tion is the most important at the moment.” (D10)
relied on him so much … The families even begged this expert to see
their relatives at the last few days.” (D9)
Good symptom control was viewed by the physicians and
The nurses did not mention holding hands with dying patients, nurses as a sign for keeping up dying patients' hope. However,
but they expressed hope as the inner energy that drove dying pa- difficulties in palliating dying cancer patients' suffering, such as
tients to keep on living well until the end of life. Both the physicians dyspnea or ascites, were associated with both the physicians and
and nurses suggested that allowing dying patients to hope for nurses’ feelings of helplessness and empathy.
something was quite important for nurturing hope; even fostering “We try to relieve their suffering, but the disease is there, dyspnea is
fake hope would help dying patients a lot. The younger health getting worse and worse. Their other conditions are also worsening.
providers, who were less skilled in communicating with dying Little we can do now … So sad to see that.” (N5)
patients, usually kept quiet or told outright lies when encountering
challenging questions. As a junior nurse said:
3.3.2. Providing comfort
“Some patients with consciousness pretty knew what was going on. The nurses indicated that they did their best to promote dying
How to help them within such a cultural context? To maintain their patients’ physical comfort as keeping them comfortable was their
hope, comforting them is the only way … ‘Please do not worry. You essential responsibility. They cleaned and dressed dying patients
are getting better. I guess you can discharge in two weeks. But I felt regularly, turned them over in bed and did mouth care. The nurses,
so embarrassed to cheat them.” (N4) especially the junior nurses, also tried to avoid invasive nursing
procedures for dying patients.
3.2.3. Spiritual care “I usually do not perform invasive nursing procedures for them,
From the narratives of both physicians and nurses, it is indicated such as drawing blood, as my nursing skills are too poor to do it
that spirituality and religion were thought to be important aspects well, which might make them suffer more. I tell a senior nurse to do
of care that improved coping with the disease and symptoms as that … I do pay great attention to mouth care as it is quite easy.”
well as strengthening quality EOL care. The nurses emphasized that (N9)
their sensitivity to dying patients’ religious background was
essential, and they were expected to meet their patients’ spiritual
and religious needs. Resuscitation and other aggressive treatments did not mean-
ingfully extend dying patients' lives at this stage, so the physi-
“Spirituality provides a foundation that helps them transcend cians preferred comprehensive treatments to alleviate the
suffering and despair … Trying to find some meaning or purpose patients' pain and to offer maximal physical comfort. However,
might do some help … One woman wanted to die in a Buddhist kind the physicians found it difficult to avoid these treatments in the
of room, to play Buddhist songs and decorate the room with provision of EOL care for dying patients, as some family members
Buddhist pictures and portraits … We did as she wished. Two days requested ongoing aggressive treatments to prolong a dying pa-
later, she passed away peacefully. It was meaningful.” (N16) tient's life.
“We should discontinue inappropriate interventions, such as blood
Besides this, some nurses reported that connection with families tests and vital signs measurements. But some families still focus on
and friends was an important element of spirituality for the dying. active treatments. These (treatments) ultimately aggravated the
They established meaningful relationships with their patients as patients' suffering and distress. We had no other choice but to do
friends by showing respect, care, love and kindness. it.” (D2)
“Those patients near the EOL stage always struggle to find a pur-
pose or meaning in life. So, I always tell them, ‘you are a great man,
3.4. Promotion of family function
have achieved so many successes, and have an amazing life legacy’
or ‘You have a great family. They all love you so much’. These words
3.4.1. Encouragement of being with dying patients
I think will help them feel relieved.” (N24)
Both the physicians and nurses stated the importance of family
members being together with the dying, which was a beneficial
The physicians in this study did not mention spirituality but said interaction not only for the dying but also for the families. Also,
it was not their job to pay attention to spiritual care for dying they addressed the importance of family function in EOL care. Just
patients. as a physician said:

Please cite this article in press as: Dong, F., et al., Caring for dying cancer patients in the Chinese cultural context: A qualitative study from the
perspectives of physicians and nurses, European Journal of Oncology Nursing (2015), http://dx.doi.org/10.1016/j.ejon.2015.10.003
F. Dong et al. / European Journal of Oncology Nursing xxx (2015) 1e8 5

“Families' support is a main impetus to keep dying patients going, The physicians and nurses stated that family members were
to gain more time … They are fully loved by their relatives, and feel sometimes unaware of the dying process and had no idea how to
satisfied when all are around them. We tell the families that their prepare themselves for a relative's death. Thus, they appreciated
loved one will die, so they have the opportunity to stay with the cultural and religious traditions related to the dying phase and
patient, and spend some time together.” (D7) taught the family members how to prepare for the coming event.
“We have a traditional death ritual, but some family members have
Furthermore, both the physicians and nurses reported their
suggestions for the families e such as not leaving the patient alone, no idea about how to do it. So we tell them what they are supposed
to do, to buy what kind of wardrobe.” (N14)
using positive physical contacts such as holding hands tightly,
touching, or making eye contact e which were described as
meaningful ways of expressing love. The physicians emphasized From the narratives of the participants, it is clear that the phy-
the importance of the family role at the EOL stage. They chose to sicians and nurses helped facilitate death at a place that was in
communicate with family members rather than dying patients accord with the dying patients' and family members' preference,
about any decision-making, treatments and arrangements for which was thought of as a meaningful way to maintain the patients'
dying patients. They stated that reducing delays in communication dignity, and even the quality of death itself. For most patients who
with family members regarding the patient's illness may provide did not know their health conditions, the health professional asked
more opportunities for families to say goodbye to dying patients, their families’ preference of a place; for those few patients in full
and the family members then had time to help complete dying awareness of their disease, the families would ask for their opinion.
patients' personal and financial business and plan the last few days
of the patients' life. “Some patients often choose a specific setting as their preferred
place of death. So we encourage the families to ask them (in full
“Timely, effective communication about the irreversible and pro- awareness of their disease) where they want to die. Some may
gressive illness is urgent at this time. It can promote their [family express their desire … at home. Then we would arrange an
members'] preparation for saying goodbyes to them [dying pa- ambulance to escort them to go home.”(D12)
tients], or contacting relevant people to have a last visit with the
patients, which I think is quite important for all of them.” (D3)
3.5. Dilemmas during EOL stage

3.4.2. Encouragement of patient care and advocating 3.5.1. Communication in the Chinese cultural context
The nurses promoted family function by providing the families The informants in the present study expressed the view that for
with certain caring skills such as “taking care of ill relatives was the provision of quality EOL care, it is essential that dying patients
thought to be a good way to express love”. Thus, supporting and were cared for by clinically competent health professionals. One of
enhancing a family's ability in taking care of dying patients then the attributes of quality care was “good communication skills”.
became a professional duty of the nurses. However, communication around sensitive areas of EOL care was
“Some family members really liked to do something for their loved thought to be the most challenging topic even for the experienced
ones. But they had no such experience and knowledge; we just physicians and nurses as a result of Chinese culture's taboo around
show them how to take care of the dying patients.” (N21) death.

Family members tended to advocate for dying patients, espe- “A physician is able to enhance, maintain or destroy hope in pa-
cially at the EOL stage, as family members in Chinese culture were tients through his attitude, behavior, and ways of communication.
seen as the decision-makers when dying patients were unable to So, whenever I go to that kind of ward, on the way there I always
make decisions for themselves. Both the physicians and nurses slow down, think over what to say, how to comfort them. I need to
emphasized that fulfilling dying patients' wishes required high design some nice words in advance to perform well. Then I fake a
skills in communication without involving discussion of death with happy expression with sweet smile to go to his bedside … I try to be
dying patients. They often encouraged the families to express dying relaxed, to tell them their health condition is not that bad.” (D1)
patients’ wishes and needs.
“Since we are not allowed to talk about death … I don't ask them However, both the physicians and nurses stated that cheating
[dying patients] directly about their final wishes because I am dying cancer patients was not always a good strategy to meet dying
inexperienced to do that. I encourage their families to communi- patients’ emotional demands. Communicating bad news was
cate with them, whether they have any wishes … After all, to fulfill thought by the healthcare professionals to be a source of job burnout,
final wishes and die with no regret is part of death with dignity.” including emotional exhaustion, and decreased personal accom-
(N20) plishment. The younger health professionals especially expressed
their needs for improving communication skills in EOL care.
“How could you say to a dying patient, ‘I am sorry, there is nothing
3.4.3. Family preparedness for impending death more we can do.’ Nobody wants to hear those fateful words, then
The physicians mentioned that they communicated with family how could I comfort them? The question has confused me for nearly
members about the patient's life expectancy in advance, so that ten years. I have not got any proper answer to it.” (D11)
they could be mentally prepared and anticipate the patient's
impending death without too much loss of hope and faith. “I dare not to look at their desperate eyes, which makes me scared
… I went to that ward, delivered the nursing procedure, and ran
“When their vital signs get worse dramatically and an inevitable away … I was reluctant to stay long in that ward.” (N5)
death nears, I would have a serious discussion with their families,
to inform them that they should understand aggressive treatments
change only the time but not the patient's ultimate fate. I then give 3.5.2. Inexperienced in psychological care
suggestion that sensible and humane decisions should be made, The informants recognized that dealing with life and death is-
but, it still depends on the families.” (D5) sues was an integral part of daily practice. They understood they

Please cite this article in press as: Dong, F., et al., Caring for dying cancer patients in the Chinese cultural context: A qualitative study from the
perspectives of physicians and nurses, European Journal of Oncology Nursing (2015), http://dx.doi.org/10.1016/j.ejon.2015.10.003
6 F. Dong et al. / European Journal of Oncology Nursing xxx (2015) 1e8

could not control life, but as a health professional they thought they
should provide psychological support to the dying and the relatives Working with dying patients left a big impression on both the
of the dead. However, some nurses pointed out the psychological physicians and nurses which, in turn, generated a significant
interventions provided to the dying patients were far from suffi- impact on their daily lives, such as causing bad moods, nightmares
cient due to the influence of Chinese culture of death and dying. and poor sleep quality. A lack of education and experience might
They learned from “errors” while “doing the job” or just “being left contribute to negative attitudes and adverse effects.
to learn from experience”.
“If there was a dying patient during my shift, I felt gloomy and
“I should provide some specific help to relieve their fear about nervous … I would probably have a nightmare about him or her … I
death, and talk death with them; just like the Western countries' think they have not influenced me so much, but I do dream about
nurses do for their patients … talk about death openly, and say them for several days.” (N15)
goodbye with them … However, I absolutely have no any idea on
how to do it … we should learn something …” (N5)
4. Discussion

From the narratives of the participants, we found that although The current study has identified the experiences of Chinese
spiritual or existential distress, as well as fear of the unknown, physicians and nurses when caring for dying cancer patients in a
could manifest anxiety in dying patients, the physicians and nurses Chinese traditional cultural context. A unique contribution of the
did not foster frank discussion of the patients’ fear. This lack of present study is that it allows a comparison of the perspectives of
discussion was thought to be an unsupportive environment. physicians and nurses on this topic. The views and experiences of
Chinese physicians and nurses were similar, suggesting that all of
“When they were confronted with death, most were poorly pro-
them cared about the dying patients, showed deep compassion,
tected, resulting in experiences of both hopelessness and despera-
and did their utmost to ensure quality EOL care and a dignified
tion. All they thought was to how to survive, how to get better. How
death.
could we destroy their ‘confidence’?” (N11)
The physicians and nurses in this study emphasized the need to
Compared with the nurses, fewer physicians mentioned psy- keeping dying patients' hope alive even in the last few minutes,
chological care for dying patients as their skills and knowledge which is consistent with other findings (Ellershaw and Ward, 2003;
were quite limited on psychological care. Von Roenn and von Gunten, 2003). Several previous studies argued
that preserving and maintaining a dying patient's hope is a major
“There were no psychological courses for medical students. And the barrier to discussing prognosis and EOL care (Knauft et al., 2005;
hospital also doesn't have many specialists on psychology. But Shirado et al., 2013; Von Roenn and von Gunten, 2003); health
addressing the dying patient's psychological issue indeed is an professionals should help dying patients refocus their hopes onto
extremely critical issue.” (D7) more realistically achievable things while not giving them false
hope, which is generally perceived as an influencing factor in
building trust between health professionals and patients (Knauft
3.5.3. Personal growth versus negative influence
et al., 2005; Shirado et al., 2013). In this study, however, the phy-
Nearly all the physicians and nurses stated that death of their
sicians and nurses did offer some unrealistic hope or expectations
patients caused them to reflect on their own value and personal life.
to dying cancer patients, which was not only perceived as beneficial
These challenging experiences motivated significant changes in
to the dying but also to the family members. Furthermore, they
those involved. Some nurses pointed out their professional growth
managed to hold the truth from dying patients even during the
from caring for dying patients and their families.
dramatic deterioration of their physical symptoms in the last days
“I have acquired much knowledge through caring for the dying, for or few hours. These results were non-consistent with previous
example, how to prepare for [the patient's] death and how to studies from other cultural contexts (Knauft et al., 2005; Shirado
communicate with the family members. I have never done that et al., 2013; Von Roenn and von Gunten, 2003). However, little
before.” (N5) research has been done about whether Chinese cancer patients and
family members actually prefer realistic versus unrealistic goals
regarding a patient's imminent death.
Besides this, the staff reported that involving themselves in such
The findings of the present study revealed that Chinese culture's
events was rewarding and they benefited a lot from their experi-
death taboo permeates the society, especially when it comes to
ences, such as developing positive outlooks on life.
cancer-related issues. The physicians and nurses avoided talking
“At that moment, you realize that the most important thing in life is about death and cancer with dying patients, and even pretended to
you're healthy and happy; it's not how wealthy you are. Money foster a false hope as illustrated above. It is not surprising in Chi-
might prolong one's life, but it can't save a person's life.” (D3) nese typical death-averse society that the majority of physicians
and nurses find it quite difficult to deal with EOL issues (Balaban,
2000), especially when communicating with dying patients.
However, working with dying cancer patients costs the physi-
Some studies have suggested that promoting a good death by
cians and nurses considerable energy. They reported that they were
listening to dying patients' fears, concerns and feelings regarding
particularly busy and under great pressure both physically and
grief and loss, would allow health professionals to understand
psychologically when dying patients were on their shifts.
dying patients' points of view (Caton and Klemm, 2006; Cevik and
Compared to senior staff, the junior physicians and nurses reported
Kav, 2013). However, these approaches may not be applicable in the
feeling more powerlessness and incompetence when facing dying
Chinese traditional context. Although the physicians and nurses
cancer patients.
showed great concern in relieving dying cancer patients' fears
“I feel nervous if there is a dying patient on my shift, and feel much about death, EOL-related communication with dying patients may
better when he dies or goes home, because I'm probably not that also need further exploration within the predominant cultural be-
busy physically and psychologically. When another dying patient is liefs. Thus, understanding Chinese specific cultural values on death
coming, I feel stressed and worried again.” (N13) issues is vital to address culturally sensitive care to dying patients

Please cite this article in press as: Dong, F., et al., Caring for dying cancer patients in the Chinese cultural context: A qualitative study from the
perspectives of physicians and nurses, European Journal of Oncology Nursing (2015), http://dx.doi.org/10.1016/j.ejon.2015.10.003
F. Dong et al. / European Journal of Oncology Nursing xxx (2015) 1e8 7

and their family members. How to meet dying cancer patients' Conflict of interest
wishes, needs and preferences is still under-researched; further
study is recommended. None declared.
The physicians and nurses did their best to ensure that their
dying patients died without uncontrolled symptoms, which might References
lead to a distressing and undignified death. They promoted family
functions to help dying patients and family members, and to make Balaban, R.B., 2000. A physician's guide to talking about end-of-life care. J. General
sure of a good death. However, Chinese medical education is Intern. Med. 15 (3), 195e200.
Caton, A.P., Klemm, P., 2006. Introduction of novice oncology nurses to end-of-life
currently failing to prepare junior physicians and nurses for their care. Clin. J. Oncol. Nurs. 10 (5), 604e608.
role in caring for dying patients and dealing with patient death (Yeo Cevik, B., Kav, S., 2013. Attitudes and experiences of nurses toward death and caring
et al., 2005). They receive little formal teaching about palliative or for dying patients in Turkey. Cancer Nurs. 36 (6), E58eE65.
Clark, D., 2012. Cultural considerations in planning palliative and end of life care.
EOL care in their role and the culture in traditional China does not
Palliat. Med. 26 (3), 195e196.
encourage learning about this subject. From the findings of the Colaizzi, P., 1978. Psychological Research as the Phenomenologist Views it. In
present study, we came to the conclusion that the physicians and Existential Phenomenological Alternative for Psychology (Valle R and King
nurses were eager to enrich their skill and knowledge for taking Meds). Oxford University Press, New York.
Cui, J., Shen, F., Ma, X., Zhao, J., 2011. What do nurses want to learn from death
care of dying cancer patients and family members. Adequate education? A survey of their needs. Oncol. Nurs. Forum 38 (6), E402eE408.
preparation of oncology health professionals for the care of dying Dickinson, G.E., Clark, D., Sque, M., 2008. Palliative care and end of life issues in UK
cancer patients could in turn improve patient outcomes, satisfy pre-registration, undergraduate nursing programmes. Nurse Educ. Today 28 (2),
163e170.
family members, and increase professionals’ job enthusiasm (Caton Ekblad, S., Marttila, A., Emilsson, M., 2000. Cultural challenges in end-of-life care:
and Klemm, 2006). That is, the more experience that physicians and reflections from focus groups' interviews with hospice staff in Stockholm. J. Adv.
nurses have with dying patients, the more positive the care expe- Nurs. 31 (3), 623e630.
Ellershaw, J., Ward, C., 2003. Care of the dying patient: the last hours or days of life.
rience becomes. BMJ(Clin. Res. ed.) 326 (7379), 30e34.
This study has shown that Chinese physicians and nurses had a Gibbins, J., McCoubrie, R., Forbes, K., 2011. Why are newly qualified doctors un-
limited knowledge of EOL care due to a dearth of formal training in prepared to care for patients at the end of life? Med. Educ. 45 (4), 389e399.
Hsu, C.Y., O'Connor, M., Lee, S., 2009. Understandings of death and dying for people
caring for dying patients. Providing support to Chinese physicians of Chinese origin. Death Stud. 33 (2), 153e174.
and nurses and tailored death education specific to meeting their Kendall, S., 2006. Being asked not to tell: nurses' experiences of caring for cancer
needs are imperative. Thus, death education in EOL care is essential patients not told their diagnosis. J. Clin. Nurs. 15 (9), 1149e1157.
Knauft, E., Nielsen, E.L., Engelberg, R.A., Patrick, D.L., Curtis, J.R., 2005. Barriers and
to reshape Chinese health professionals’ views about death. EOL
facilitators to end-of-life care communication for patients with COPD. Chest 127
simulation in diverse clinical sites may provide health professionals (6), 2188e2196.
with a valuable lesson and help them to cope with their emotions, Lange, M., Thom, B., Kline, N.E., 2008. Assessing nurses' attitudes toward death and
and to equip themselves with skill and knowledge about death and caring for dying patients in a comprehensive cancer center. Oncol. Nurs. Forum
35 (6), 955e959.
dying. EOL care programs and nursing training models e such as Lu, Y.H., Guo, R.X., Liu, L., 2011. Oncology nurses' identification with their re-
the End-of-life Nursing Education Consortium (ELNEC) program sponsibilities and negative experience in caring for dying cancer patients. Chin.
(American Association of Colleges of Nursing, 2004) which aims to J. Nurs. Manag. 11 (2), 84e86.
Merriam, S.B., 2009. Qualitative Research: a Guide to Design and Implementation.
improve EOL care abilities of nurses e could be adapted specifically Jossey-Bass, San Francisco.
for wider use in the Chinese cultural context. In addition, studies to Mystakidou, K., Parpa, E., Tsilila, E., Katsouda, E., Vlahos, L., 2004. Cancer informa-
develop coping strategies on how to effectively take care of dying tion disclosure in different cultural contexts. Support. Care Cancer 12 (3),
147e154.
cancer patients should be conducted. Olsen, D.P., Honghong, W., Pang, S., 2010. Informed consent practices of Chinese
There are several limitations to this study. First, the number of nurse researchers. Nurs. Ethics 17 (2), 179e187.
participants interviewed is small and the findings may not be Penson, R.T., Dignan, F.L., Canellos, G.P., Picard, C.L., Lynch, T.J., 2000. Burnout: caring
for the caregivers. The Oncologist 5 (5), 425e434.
generalizable; however, we achieved saturation of data and showed
Peterson, J., Johnson, M.A., Halvorsen, B., Apmann, L., Chang, P.C., Kershek, S., et al.,
a good picture of how Chinese health professionals took care of 2010. What is it so stressful about caring for a dying patient? A qualitative study
dying cancer patients. Second, all the physicians in this study were of nurses' experiences. Int. J. Palliat. Nurs. 16 (4), 181e187.
Schlairet, M.C., 2009. End-of-life nursing care: statewide survey of nurses' educa-
male and the nurses were female, which might lead to findings that
tion needs and effects of education. J. Prof. Nurs. 25 (3), 170e177.
are dependent on gender. Thirdly, these participants were known Shirado, A., Morita, T., Akazawa, T., Miyashita, M., Sato, K., Tsuneto, S., Shima, Y.,
to the research team, which suggests that their experiences may be 2013. Both maintaining hope and preparing for death: effects of physicians' and
‘superficial’ as they might have been unwilling to describe their nurses' behaviors from bereaved family members' perspectives. J. Pain Symp-
tom Manag. 45 (5), 848e858.
inner thoughts and worried about the confidentiality of what they Sun, Y.Q., Sun, B.F., Li, X.M., Zhao, J., Zhang, P., 2011. A qualitative study on the
reported. However, it was much easier to build trust and properly reasons for cancer families choosing whether to inform patient the truth. Med.
comprehend responses to the questions between the researchers Philos. 32 (6), 77e78.
Tong, A., Sainsbury, P., Craig, J., 2007. Consolidated criteria for reporting qualitative
and the participants. research (COREQ): a 32-item checklist for interviews and focus groups. Int. J.
Qual. Health Care 19 (6), 349e357.
5. Conclusions Von Roenn, J.H., von Gunten, C.F., 2003. Setting goals to maintain hope. J. Clin.
Oncol. 21 (3), 570e574.
Wang, S.Y., Chen, C.H., Chen, Y.S., Huang, H.L., 2004a. The attitude toward truth
Chinese physicians and nurses caring for dying cancer patients telling of cancer in Taiwan. J. Psychosom. Res. 57 (1), 53e58.
expressed their great concern on treating distressing symptoms, Wang, X.S., Di, L.J., Reyes-Gibby, C.C., Guo, H., Liu, S.J., Cleeland, C.S., 2004b. End-of-
life care in urban areas of China: a survey of 60 oncology clinicians. J. Pain
maintaining diminishing hope, meeting spiritual needs and Symptom Manag. 27 (2), 125e132.
addressing psychological issues. However, there is a lack of infor- Wong, M.S., Chan, S.W., 2007. The experiences of Chinese family members of
mation and training programs about quality EOL care in the terminally ill patients - a qualitative study. J. Clin. Nurs. 16 (12), 2357e2364.
Xu, W., Towers, A.D., Li, P., Collet, J.P., 2006. Traditional Chinese medicine in cancer
mainstream textbooks to which Chinese physicians and nurses turn
care: perspectives and experiences of patients and professionals in China. Eur. J.
for information about care of dying patients. Therefore, external Cancer Care 15 (4), 397e403.
programs and individually tailored orientation plans including EOL Xu, Y., 2007. Death and dying in the Chinese culture: implications for health care
care should be developed and offered to Chinese physicians and practice. Home Health Care Manag. Pract. 19 (5), 412e414.
Yeo, S.S., Meiser, B., Barlow-Stewart, K., Goldstein, D., Tucker, K., Eisenbruch, M.,
nurses who need guidance to enrich their knowledge, clinical skills 2005. Understanding community beliefs of Chinese-Australians about cancer:
and coping strategies. initial insights using an ethnographic approach. Psycho-oncology 14 (3),

Please cite this article in press as: Dong, F., et al., Caring for dying cancer patients in the Chinese cultural context: A qualitative study from the
perspectives of physicians and nurses, European Journal of Oncology Nursing (2015), http://dx.doi.org/10.1016/j.ejon.2015.10.003
8 F. Dong et al. / European Journal of Oncology Nursing xxx (2015) 1e8

174e186. Zhai, X.P., Dai, X.J., 2006. Investigation on the current situation of nurses' recogni-
Zeng, T.Y., Chen, F.J., Yang, X.M., Fang, P.Q., 2008. Investigation on attitudes of the tion and implementation of death education in cancer depart-ment. J. Nurs.
patients with cancer towards the treatment of advanced cancer and death. Adm. 16 (11), 9e11.
J. Nurs. Sci. 23 (7), 71e73.

Please cite this article in press as: Dong, F., et al., Caring for dying cancer patients in the Chinese cultural context: A qualitative study from the
perspectives of physicians and nurses, European Journal of Oncology Nursing (2015), http://dx.doi.org/10.1016/j.ejon.2015.10.003

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