Caring for dying cancer patients in the Chinese ...

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: Received 8 May 2015 Received in revised form 25 September 2015 Accepted 9 October 2015

Objective: To explore the experiences of Chinese physicians and nurses who care for dying cancer patients in their practical work. Method: This was a qualitative study using semi-structured face-to-face interviews. Fifteen physicians and 22 nurses were recruited from a cancer center in mainland China. The data were analyzed by qualitative thematic analysis. Results: Disclosure of information on death and cancer to dying cancer patients is taboo in traditional Chinese culture, which greatly decreases the physicians' and nurses' effective communication with dying patients in end-of-life (EOL) care. Both physicians and nurses described strong ambitions to give dying cancer patients high-quality care, and they emphasized the importance of maintaining dying patients' hopes in the death-denying cultural context. However, the nurses were more concerned with dying patients' physical comfort and wish fulfillment, while the physicians placed greatest emphasis on patients' rights and symptom management. Both physicians and nurses suffered whilst also benefitting from taking care of dying patients which helped with their personal growth and allowed greater insight 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.

Keywords: Cancer Death Dying End-of-life Experience Nurses Physicians Qualitative research

1. Introduction Health professionals working in cancer centers are often confronted with dying patients and bereaved family members. In their role as supporters, they are the ones to facilitate a dignified, comfortable death that honors patient and family choices, no matter where the setting of death occurs. However, caring for dying cancer patients and experiencing patient death can stir myriad emotions and thoughts within them, such as raising doubts about their competency, feelings of guilt, loss or injury from failure to meet their expectations of care (Cevik and Kav, 2013; Gibbins et al., 2011; Penson et al., 2000; Wang et al., 2004a). The presence of dying cancer patients has been thought to be a significant contributor to burnout and turnover of health

* Corresponding author. E-mail address: [email protected] (F. Dong).

professionals (Kendall, 2006; Penson et al., 2000). They are under pressure to return to an environment where they must care for other cancer patients who may also be critically ill and expect an imminent death. Researchers (Lange et al., 2008; Peterson et al., 2010) have stated that health professionals with better skills and more experience tend to provide good-quality EOL care and establish meaningful and supportive relationships with patients and family members, leading to improved patient outcomes and satisfaction of patients and their families. Cultural factors take an important role in the practice of medical issues. To a large extent, people's beliefs and attitudes about health and disease are influenced or determined by their traditional culture (Ekblad et al., 2000). Chinese culture has a particular 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 aspect of non-disclosure in China, to some extent greatly influences 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

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F. Dong et al. / European Journal of Oncology Nursing xxx (2015) 1e8

oriented stance (Jiang et al., 2007). Even for contemporary Chinese, including health professionals, talking about death and dying is very challenging (Dickinson et al., 2008; Wang et al., 2004b; Xu et al., 2006), especially for those who are dying; discussion about death is avoided as such talk may hasten the pace of their dying process and incur bad luck (Hsu et al., 2009; Wang et al., 2004a). Compared to Chinese culture, Westerners are better prepared to face death, and talking about death with dying patients and making necessary preparation to deal with death are encouraged in Western cultures where the majority of people identify themselves as Christians (Xu, 2007). The perception of cancer is also influenced by culture. There is a common belief in Chinese societies that cancer diagnosis is regarded as a metaphor for death because of its high mortality rate. Due to the family-oriented cultural context (Lu et al., 2011; Olsen et al., 2010), Chinese physicians and nurses are required to give priority to families who decide whether or not to tell the patients the terminal diagnosis (Sun et al., 2011; Wong and Chan, 2007). The family members usually exclude telling the patient the truth, even when they are at the EOL stages, which is considered by their families as an good way to protect them emotionally (Wang et al., 2004b; Xu et al., 2006). However, some dying patients may know very well what their health condition is, even though they are kept uninformed (Zeng et al., 2008). In fact, some Chinese physicians preferred disclosure to dying patients, as they thought such disclosure may allow dying patients to resolve unfinished business and manage the last days of their lives (Jiang et al., 2007). On the other hand, Chinese cancer patients’ attitude toward truth-telling was greatly influenced by their disease stage; fewer patients wanted to know their diagnosis during terminal stages than early stages of cancer (Jiang et al., 2007). Consequently, Chinese health professionals are in a dilemma whether terminal cancer information should or should not be disclosed to dying patients, and how to deliver quality EOL care to facilitate a good death for the patients. Researchers indicate that culture imposes certain limitations on health professionals' options and behaviors when caring for dying patients (Clark, 2012; Mystakidou et al., 2004). Chinese physicians' and nurses' experience of caring for dying cancer patients may have different implications and significance for each (Schlairet, 2009; Xu et al., 2006; Zhai and Dai, 2006). To our knowledge, no study has simultaneously involved Chinese physicians and nurses in exploring the experiences of caring for dying cancer patients in a Chinese traditional cultural context. Thus, a public discussion is essential to develop a better understanding of the points of view of Chinese physicians and nurses, and also to learn how to integrate these perspectives. The purpose of this study was to identify Chinese physicians' and nurses' perceptions of caring for dying cancer patients who are in their final days or hours in Chinese cultural contexts, with the objective of illuminating similarities and differences in experiences and helping to develop effective training. 2. Methods A qualitative research design was chosen for this study as qualitative study is considered to be an ideal way of yielding information and exploring a specific phenomenon; it also helps to gain a full view of the phenomenon under research. This study was based on the phenomenology study approach (Merriam, 2009) and was presented according to the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist for qualitative research (Tong et al., 2007). Research ethics approval was gained from the Human Research Ethnics Board of Tianjin Medical University Cancer Institute and Hospital.

2.1. Sample This descriptive qualitative research was conducted in a 2400bed cancer hospital in northern mainland China. Purposive sampling (Merriam, 2009) was used to include participants with a variety of professional titles, ages, and years of clinical experience in different departments of the hospital during May to October 2014. To be eligible to participate in this study, the participants had to have worked with and been exposed to dying cancer patients for at least half a year; to be more than 18 years old; to be willing to participate; and to be a Chinese speaker. Fifteen physicians participated in this study, with a mean age of 34.56 years (SD ¼ 8.50); the youngest was 27 years old, and the oldest was 54. The mean number of years of clinical experience of the physicians was 8.31 (SD ¼ 7.71); the maximum experience was 25 years, and the minimum was 1 year. Twenty-two nurses were also recruited. The mean age of the nurses was 29.34 years (SD ¼ 6.63); the youngest was 24 years old, and the oldest was 49. The mean number of years of clinical experience of the nurses was 7.47 (SD ¼ 6.52); the maximum length of clinical experience was 27 years, and the minimum was 0.5 years. 2.2. Data collection A semi-structured face-to-face interview guide was developed based on the purpose of the study; this was pretested with two nurses and two physicians to ensure the questions were understandable and answerable, on the basis of which we adapted this interview guide again. Prior to the one-to-one interviews, participants completed a demographic form, were made aware of the aims of the study, and provided written information consent. They were guaranteed that they could withdraw from the study at any time; the study was anonymous, and identifying factors were removed from the data. All the material and information was locked by the first researcher in a cabinet and accessed only by the researchers. The interviews, ranging in length from 30 to 60 min, were carried out at a site of each participant's choosing by a single researcher (R.S. Zheng) who had received training in qualitative research. Each participant was asked to recount their feelings and personal experiences regarding caring for dying cancer patients. Interview questions included ‘How do you feel when you are caring for a dying cancer patient?’, ‘What are your thoughts and feelings when doing that?’, ‘What do you think of quality EOL care?’, ‘What would you do for a dying cancer patient?’ and ‘How does the experience of caring for dying cancer patients impact you?’ Probes were used to encourage participants to elaborate on their experiences: for example, “Could you tell me more about that?”, “What do you mean by saying that?” etc. 2.3. Data analysis Interviews were digitally recorded and transcribed verbatim. Data analysis was done independently by the first and second authors, who followed the standard methods for qualitative thematic analysis. Data analysis began with the first interview and was done in conjunction with data collection (Merriam, 2009). The method used for analyzing qualitative data was Colaizzi's approach (Colaizzi, 1978): (1) to read the transcripts repeatedly while listening to the digital recordings; (2) to extract essential elements and meaningful statements from the transcripts; (3) to code the same elements and statements; (4) to arrange the formulated meanings into clusters of themes; (5) to state detailed descriptions for every extracted theme; (6) to read the themes and the descriptions again; (7) to return the transcripts to the participants to



obtain their views and to be verified. The first and second authors compared and determined the final themes together and collaborated when there were differences. Data collection did not cease until no new information was obtained, which indicates data saturation has been reached. To maximize credibility, the themes and citations were translated from Chinese into English by two independent translators. The two translated versions were compared, analyzed, and modified by the first and second authors. A bilingual person who was not connected to the research was then asked to translate the English version back into Chinese. Finally the research team reviewed the results and revised some of the English until it was closer in meaning to the original Chinese. 3. Results Five main themes emerge from this qualitative research: (1) strong senses of obligation and crisis; (2) hope and spirit maintenance; (3) improvement of quality of life; (4) promotion of family function; (5) dilemmas during EOL stage. 3.1. Strong senses of obligation and crisis At the beginning of the interviews, both the physicians and nurses were asked to describe their feelings and thoughts at the very moment of their recognizing that a cancer patient was dying. As disclosed through their narratives, the physicians and nurses expressed similar views and emphasized the importance of their presence and availability at the patients’ bedside, which they thought demonstrated their concern to the patients and family members. “Their conditions were worsening dramatically … may go away at any time. I stayed in the hospital, went to their bedside every ten 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.” (D5) The physicians and nurses gradually became experienced in recognizing a dying patient's imminent death. On noticing one patient was dying, they would have a sense of crisis and pay extra attention to him or her. At the same time, they were alert and fully prepared for attempting resuscitation. “I go to their wards numerous times, and keep an eye on them. They need much more attention. I can tell that he might die this night or tomorrow, no later than the day after tomorrow. I am under pressure and have a sense of crisis because it will come very quickly. We should face it with them together.” (N12) 3.2. Hope and spirit maintenance The narratives of this study indicated that the maintenance of hope was considered to be quite critical in the care of dying patients, as hope creates a positive attitude and reduces suffering. That is, living with terminal cancer did not mean living without hope for dying patients. The physicians and nurses spontaneously expressed, albeit in different terms, the importance of maintaining dying cancer patients’ hope for life. 3.2.1. Death denying and information non-disclosure The participants clearly described that Chinese traditional death culture did not allow them to discuss the death event with dying patients, especially at the terminal stages. Instead, the physicians

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and nurses did their best to foster and maintain dying patients' hope. However, keeping dying patients' hope within such a cultural context was not an easy job. They experienced an ethical dilemma between keeping dying patients' hope and truth; the latter may diminish dying patients' hope. Instead of using the word ‘cancer’ and ‘tumor’ when speaking with patients, the physicians and nurses used the word ‘the disease’, which they believed helped to maintain the patients' hope even at the EOL stage. “The essential obligation for a physician is to keep their patient’ hope, not to diminish it, depending on which the patients fight the cancer as long as possible, even at the last minute. They still imagine they can be cured, feel safe and be positive towards life and treatment …. If they know they are dying, they probably lose hope, feel desperate … I also ask the families to conceal the secret. No matter what the patients ask about their condition, we're not supposed to let out any bad information.” (D1) “They were doing their best to fight with the disease, and how could you tell them they've got advanced cancer? There was not much time left? They might be depressive, gloomy or even committing suicide, no hope towards life … It's much better to die in hope than live in despair.” (N8) However, deception was reported to be difficult to maintain, and the nurses and physicians identified deficits in non-disclosure. They questioned the effectiveness of hiding cancer diagnoses from patients, and provided examples of patients suspecting the diagnosis. A few physicians thought dying patients should be told about their health conditions since everyone has his right to know about his disease and die without regret. “It's really difficult to tell a lie as his health condition is worsening dramatically. His time is coming. But how could I tell him? It is so difficult to deal with that … But we should tell him.” (D2) Both the physicians and nurses attributed their cancer information 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, some physicians reported that they tried to seek information and knowledge about death and its related issues, which they thought might help with their understanding of death, and then in turn improve their ability to interpret the death event with their patients. “Few people have religious belief in our country, so when one is diagnosed with cancer and death is coming, most would lose control over life, no inner sustenance at all, as if death was a mysterious issue. They show ignorance, fear, complete rejection … Neither do I know how to interpret death from a religious standpoint. I have begun to read some books about death, such as the Bible, the Buddhist … to find out how to recognize death and explain it in a common way … just to help my patients and myself as well.” (D11)

3.2.2. Strengthening inner energy Individual patient's worth as a source of hope was emphasized by the physicians in this study. That is, it gave dying patients hope when their physicians made them feel valuable and cared for. The physicians also supported their dying patients through physical contact, which was thought to be an important way to express their concern. Shaking hands was especially emphasized by the physicians to convey their support. “A physician's hand is just like a life-saving straw, to give them hope and support. So whenever I went to their bedside, I held their


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hands tightly. They might have no strength at all, but I do … By shaking hands you tell them you do care about them and they can rely on you. On the other hand, shaking their hands can help you read what they were thinking … I just wanted them to know I would be always there with them.” (D1) How to preserve dying patients' faith or a meaning of life until the very end of life was reported by the participants to be quite difficult. However, quite surprisingly, an experienced and respected physician might have a more positive influence on the dying patients’ hope for life during the last few days. “The president of the hospital (an experienced and respected expert in the country) came to the dying patients' bedside, and checked their health condition. His words, even a slim smile had magical power for them, gave them much hope to live. They trusted and relied on him so much … The families even begged this expert to see their relatives at the last few days.” (D9) The nurses did not mention holding hands with dying patients, but they expressed hope as the inner energy that drove dying patients to keep on living well until the end of life. Both the physicians and nurses suggested that allowing dying patients to hope for something was quite important for nurturing hope; even fostering fake hope would help dying patients a lot. The younger health providers, who were less skilled in communicating with dying patients, usually kept quiet or told outright lies when encountering challenging questions. As a junior nurse said: “Some patients with consciousness pretty knew what was going on. How to help them within such a cultural context? To maintain their hope, comforting them is the only way … ‘Please do not worry. You are getting better. I guess you can discharge in two weeks. But I felt so embarrassed to cheat them.” (N4) 3.2.3. Spiritual care From the narratives of both physicians and nurses, it is indicated that spirituality and religion were thought to be important aspects of care that improved coping with the disease and symptoms as well as strengthening quality EOL care. The nurses emphasized that their sensitivity to dying patients’ religious background was essential, and they were expected to meet their patients’ spiritual and religious needs.

“Spiritual care? No, it's out of my realm of expertise and impractical to me, you know, we're just too busy … But indeed, they must have been in a struggle to find life meaning, something spiritual …” (D8) 3.3. Improvement of quality of life 3.3.1. Control of physical symptoms All the participants mentioned that minimizing dying cancer patients’ suffering at the EOL stage was a core responsibility for them. When they were asked what was done for dying patients at this stage, they mentioned that pain management had priority. “Good symptom alleviation and optimized quality of life for dying cancer patients is of importance to maintain a life's meaning. They're in unrelieved pain, so disturbing … Analgesic administration is the most important at the moment.” (D10) Good symptom control was viewed by the physicians and nurses as a sign for keeping up dying patients' hope. However, difficulties in palliating dying cancer patients' suffering, such as dyspnea or ascites, were associated with both the physicians and nurses’ feelings of helplessness and empathy. “We try to relieve their suffering, but the disease is there, dyspnea is getting worse and worse. Their other conditions are also worsening. Little we can do now … So sad to see that.” (N5) 3.3.2. Providing comfort The nurses indicated that they did their best to promote dying patients’ physical comfort as keeping them comfortable was their essential responsibility. They cleaned and dressed dying patients regularly, turned them over in bed and did mouth care. The nurses, especially the junior nurses, also tried to avoid invasive nursing procedures for dying patients. “I usually do not perform invasive nursing procedures for them, such as drawing blood, as my nursing skills are too poor to do it well, which might make them suffer more. I tell a senior nurse to do that … I do pay great attention to mouth care as it is quite easy.” (N9)

“Spirituality provides a foundation that helps them transcend suffering and despair … Trying to find some meaning or purpose might do some help … One woman wanted to die in a Buddhist kind of room, to play Buddhist songs and decorate the room with Buddhist pictures and portraits … We did as she wished. Two days later, she passed away peacefully. It was meaningful.” (N16)

Resuscitation and other aggressive treatments did not meaningfully extend dying patients' lives at this stage, so the physicians preferred comprehensive treatments to alleviate the patients' pain and to offer maximal physical comfort. However, the physicians found it difficult to avoid these treatments in the provision of EOL care for dying patients, as some family members requested ongoing aggressive treatments to prolong a dying patient's life.

Besides this, some nurses reported that connection with families and friends was an important element of spirituality for the dying. They established meaningful relationships with their patients as friends by showing respect, care, love and kindness.

“We should discontinue inappropriate interventions, such as blood tests and vital signs measurements. But some families still focus on active treatments. These (treatments) ultimately aggravated the patients' suffering and distress. We had no other choice but to do it.” (D2)

“Those patients near the EOL stage always struggle to find a purpose or meaning in life. So, I always tell them, ‘you are a great man, 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 I think will help them feel relieved.” (N24) The physicians in this study did not mention spirituality but said it was not their job to pay attention to spiritual care for dying patients.

3.4. Promotion of family function 3.4.1. Encouragement of being with dying patients Both the physicians and nurses stated the importance of family members being together with the dying, which was a beneficial interaction not only for the dying but also for the families. Also, they addressed the importance of family function in EOL care. Just as a physician said:



“Families' support is a main impetus to keep dying patients going, to gain more time … They are fully loved by their relatives, and feel satisfied when all are around them. We tell the families that their loved one will die, so they have the opportunity to stay with the patient, and spend some time together.” (D7) Furthermore, both the physicians and nurses reported their suggestions for the families e such as not leaving the patient alone, 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 the importance of the family role at the EOL stage. They chose to communicate with family members rather than dying patients about any decision-making, treatments and arrangements for dying patients. They stated that reducing delays in communication with family members regarding the patient's illness may provide more opportunities for families to say goodbye to dying patients, and the family members then had time to help complete dying patients' personal and financial business and plan the last few days of the patients' life. “Timely, effective communication about the irreversible and progressive illness is urgent at this time. It can promote their [family members'] preparation for saying goodbyes to them [dying patients], or contacting relevant people to have a last visit with the patients, which I think is quite important for all of them.” (D3)

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The physicians and nurses stated that family members were sometimes unaware of the dying process and had no idea how to prepare themselves for a relative's death. Thus, they appreciated cultural and religious traditions related to the dying phase and taught the family members how to prepare for the coming event. “We have a traditional death ritual, but some family members have no idea about how to do it. So we tell them what they are supposed to do, to buy what kind of wardrobe.” (N14) From the narratives of the participants, it is clear that the physicians and nurses helped facilitate death at a place that was in accord with the dying patients' and family members' preference, which was thought of as a meaningful way to maintain the patients' dignity, and even the quality of death itself. For most patients who did not know their health conditions, the health professional asked their families’ preference of a place; for those few patients in full awareness of their disease, the families would ask for their opinion. “Some patients often choose a specific setting as their preferred place of death. So we encourage the families to ask them (in full awareness of their disease) where they want to die. Some may express their desire … at home. Then we would arrange an ambulance to escort them to go home.”(D12)

3.5. Dilemmas during EOL stage 3.4.2. Encouragement of patient care and advocating The nurses promoted family function by providing the families with certain caring skills such as “taking care of ill relatives was thought to be a good way to express love”. Thus, supporting and enhancing a family's ability in taking care of dying patients then became a professional duty of the nurses. “Some family members really liked to do something for their loved ones. But they had no such experience and knowledge; we just show them how to take care of the dying patients.” (N21) Family members tended to advocate for dying patients, especially at the EOL stage, as family members in Chinese culture were seen as the decision-makers when dying patients were unable to make decisions for themselves. Both the physicians and nurses emphasized that fulfilling dying patients' wishes required high skills in communication without involving discussion of death with dying patients. They often encouraged the families to express dying patients’ wishes and needs. “Since we are not allowed to talk about death … I don't ask them [dying patients] directly about their final wishes because I am inexperienced to do that. I encourage their families to communicate with them, whether they have any wishes … After all, to fulfill final wishes and die with no regret is part of death with dignity.” (N20)

3.4.3. Family preparedness for impending death The physicians mentioned that they communicated with family members about the patient's life expectancy in advance, so that they could be mentally prepared and anticipate the patient's impending death without too much loss of hope and faith. “When their vital signs get worse dramatically and an inevitable 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 suggestion that sensible and humane decisions should be made, but, it still depends on the families.” (D5)

3.5.1. Communication in the Chinese cultural context The informants in the present study expressed the view that for the provision of quality EOL care, it is essential that dying patients were cared for by clinically competent health professionals. One of the attributes of quality care was “good communication skills”. However, communication around sensitive areas of EOL care was thought to be the most challenging topic even for the experienced physicians and nurses as a result of Chinese culture's taboo around death. “A physician is able to enhance, maintain or destroy hope in patients through his attitude, behavior, and ways of communication. So, whenever I go to that kind of ward, on the way there I always slow down, think over what to say, how to comfort them. I need to design some nice words in advance to perform well. Then I fake a happy expression with sweet smile to go to his bedside … I try to be relaxed, to tell them their health condition is not that bad.” (D1) However, both the physicians and nurses stated that cheating dying cancer patients was not always a good strategy to meet dying patients’ emotional demands. Communicating bad news was thought by the healthcare professionals to be a source of job burnout, including emotional exhaustion, and decreased personal accomplishment. 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 more we can do.’ Nobody wants to hear those fateful words, then how could I comfort them? The question has confused me for nearly ten years. I have not got any proper answer to it.” (D11) “I dare not to look at their desperate eyes, which makes me scared … I went to that ward, delivered the nursing procedure, and ran away … I was reluctant to stay long in that ward.” (N5) 3.5.2. Inexperienced in psychological care The informants recognized that dealing with life and death issues was an integral part of daily practice. They understood they


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could not control life, but as a health professional they thought they should provide psychological support to the dying and the relatives of the dead. However, some nurses pointed out the psychological interventions provided to the dying patients were far from sufficient due to the influence of Chinese culture of death and dying. They learned from “errors” while “doing the job” or just “being left to learn from experience”. “I should provide some specific help to relieve their fear about death, and talk death with them; just like the Western countries' nurses do for their patients … talk about death openly, and say goodbye with them … However, I absolutely have no any idea on how to do it … we should learn something …” (N5) From the narratives of the participants, we found that although spiritual or existential distress, as well as fear of the unknown, could manifest anxiety in dying patients, the physicians and nurses did not foster frank discussion of the patients’ fear. This lack of discussion was thought to be an unsupportive environment. “When they were confronted with death, most were poorly protected, resulting in experiences of both hopelessness and desperation. All they thought was to how to survive, how to get better. How could we destroy their ‘confidence’?” (N11) Compared with the nurses, fewer physicians mentioned psychological care for dying patients as their skills and knowledge were quite limited on psychological care. “There were no psychological courses for medical students. And the hospital also doesn't have many specialists on psychology. But addressing the dying patient's psychological issue indeed is an extremely critical issue.” (D7)

3.5.3. Personal growth versus negative influence Nearly all the physicians and nurses stated that death of their patients caused them to reflect on their own value and personal life. These challenging experiences motivated significant changes in those involved. Some nurses pointed out their professional growth from caring for dying patients and their families. “I have acquired much knowledge through caring for the dying, for example, how to prepare for [the patient's] death and how to communicate with the family members. I have never done that before.” (N5) Besides this, the staff reported that involving themselves in such events was rewarding and they benefited a lot from their experiences, such as developing positive outlooks on life. “At that moment, you realize that the most important thing in life is you're healthy and happy; it's not how wealthy you are. Money might prolong one's life, but it can't save a person's life.” (D3) However, working with dying cancer patients costs the physicians and nurses considerable energy. They reported that they were particularly busy and under great pressure both physically and psychologically when dying patients were on their shifts. Compared to senior staff, the junior physicians and nurses reported feeling more powerlessness and incompetence when facing dying cancer patients. “I feel nervous if there is a dying patient on my shift, and feel much better when he dies or goes home, because I'm probably not that busy physically and psychologically. When another dying patient is coming, I feel stressed and worried again.” (N13)

Working with dying patients left a big impression on both the physicians and nurses which, in turn, generated a significant impact on their daily lives, such as causing bad moods, nightmares and poor sleep quality. A lack of education and experience might contribute to negative attitudes and adverse effects. “If there was a dying patient during my shift, I felt gloomy and nervous … I would probably have a nightmare about him or her … I think they have not influenced me so much, but I do dream about them for several days.” (N15) 4. Discussion The current study has identified the experiences of Chinese physicians and nurses when caring for dying cancer patients in a Chinese traditional cultural context. A unique contribution of the present study is that it allows a comparison of the perspectives of physicians and nurses on this topic. The views and experiences of Chinese physicians and nurses were similar, suggesting that all of them cared about the dying patients, showed deep compassion, and did their utmost to ensure quality EOL care and a dignified death. The physicians and nurses in this study emphasized the need to keeping dying patients' hope alive even in the last few minutes, which is consistent with other findings (Ellershaw and Ward, 2003; Von Roenn and von Gunten, 2003). Several previous studies argued that preserving and maintaining a dying patient's hope is a major barrier to discussing prognosis and EOL care (Knauft et al., 2005; Shirado et al., 2013; Von Roenn and von Gunten, 2003); health professionals should help dying patients refocus their hopes onto 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 et al., 2005; Shirado et al., 2013). In this study, however, the physicians and nurses did offer some unrealistic hope or expectations to dying cancer patients, which was not only perceived as beneficial to the dying but also to the family members. Furthermore, they managed to hold the truth from dying patients even during the dramatic deterioration of their physical symptoms in the last days or few hours. These results were non-consistent with previous studies from other cultural contexts (Knauft et al., 2005; Shirado et al., 2013; Von Roenn and von Gunten, 2003). However, little research has been done about whether Chinese cancer patients and family members actually prefer realistic versus unrealistic goals regarding a patient's imminent death. The findings of the present study revealed that Chinese culture's death taboo permeates the society, especially when it comes to cancer-related issues. The physicians and nurses avoided talking about death and cancer with dying patients, and even pretended to foster a false hope as illustrated above. It is not surprising in Chinese 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. Some studies have suggested that promoting a good death by listening to dying patients' fears, concerns and feelings regarding grief and loss, would allow health professionals to understand dying patients' points of view (Caton and Klemm, 2006; Cevik and Kav, 2013). However, these approaches may not be applicable in the Chinese traditional context. Although the physicians and nurses showed great concern in relieving dying cancer patients' fears about death, EOL-related communication with dying patients may also need further exploration within the predominant cultural beliefs. Thus, understanding Chinese specific cultural values on death issues is vital to address culturally sensitive care to dying patients



and their family members. How to meet dying cancer patients' wishes, needs and preferences is still under-researched; further study is recommended. The physicians and nurses did their best to ensure that their dying patients died without uncontrolled symptoms, which might lead to a distressing and undignified death. They promoted family functions to help dying patients and family members, and to make sure of a good death. However, Chinese medical education is currently failing to prepare junior physicians and nurses for their role in caring for dying patients and dealing with patient death (Yeo et al., 2005). They receive little formal teaching about palliative or EOL care in their role and the culture in traditional China does not encourage learning about this subject. From the findings of the present study, we came to the conclusion that the physicians and nurses were eager to enrich their skill and knowledge for taking care of dying cancer patients and family members. Adequate preparation of oncology health professionals for the care of dying cancer patients could in turn improve patient outcomes, satisfy family members, and increase professionals’ job enthusiasm (Caton and Klemm, 2006). That is, the more experience that physicians and nurses have with dying patients, the more positive the care experience becomes. This study has shown that Chinese physicians and nurses had a limited knowledge of EOL care due to a dearth of formal training in caring for dying patients. Providing support to Chinese physicians and nurses and tailored death education specific to meeting their needs are imperative. Thus, death education in EOL care is essential to reshape Chinese health professionals’ views about death. EOL simulation in diverse clinical sites may provide health professionals with a valuable lesson and help them to cope with their emotions, and to equip themselves with skill and knowledge about death and dying. EOL care programs and nursing training models e such as the End-of-life Nursing Education Consortium (ELNEC) program (American Association of Colleges of Nursing, 2004) which aims to improve EOL care abilities of nurses e could be adapted specifically for wider use in the Chinese cultural context. In addition, studies to develop coping strategies on how to effectively take care of dying cancer patients should be conducted. There are several limitations to this study. First, the number of participants interviewed is small and the findings may not be generalizable; however, we achieved saturation of data and showed a good picture of how Chinese health professionals took care of dying cancer patients. Second, all the physicians in this study were male and the nurses were female, which might lead to findings that are dependent on gender. Thirdly, these participants were known to the research team, which suggests that their experiences may be ‘superficial’ as they might have been unwilling to describe their inner thoughts and worried about the confidentiality of what they reported. However, it was much easier to build trust and properly comprehend responses to the questions between the researchers and the participants. 5. Conclusions Chinese physicians and nurses caring for dying cancer patients expressed their great concern on treating distressing symptoms, maintaining diminishing hope, meeting spiritual needs and addressing psychological issues. However, there is a lack of information and training programs about quality EOL care in the mainstream textbooks to which Chinese physicians and nurses turn for information about care of dying patients. Therefore, external programs and individually tailored orientation plans including EOL care should be developed and offered to Chinese physicians and nurses who need guidance to enrich their knowledge, clinical skills and coping strategies.

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