“It’s a Tall Order but I’ll Try”: a qualitative study on Chinese nurses’ cognition and experience responding to cancer patients’ requests to hasten death

The purpose of this study is to understand the cognition and experience of oncology nurses in China when responding to a patient’s request to hasten death, to describe the obstacles that prevent their response, and to provide suggestions for dealing with the patient’s request. Researchers conducted a qualitative study that consisted of open-ended, semi-structured interviews with 18 registered nurses who had more than 5 years of working experience in the oncology department at a large-scale urban hospital. We analyzed these data for content and themes. How to deal with patients’ requests to hasten death is a problem often encountered and handled by nurses in the Department of Oncology. Nurses have a certain understanding of the patients’ requests to hasten death. This study abstracts four themes: (1) the nurses’ cognition of the “Accelerate the process of death”; (2) the methods they use to deal with the patients’ requests to hasten death; (3) the obstacles that prevent nurses from fulfilling the patients’ requests to hasten death; and (4) their suggestions for improvement. Nurses have a deep understanding of the real thoughts of patients who make a death request, and they hope to provide the corresponding psychological support and physical care. However, the lack of relevant knowledge, policy support, and cooperation of patients’ families are obstacles that prevent them from taking action. Therefore, increasing relevant training for nurses, encouraging multi-department cooperation, and developing standardized nursing processes may lay a foundation for oncology nurses to better undertake and guide such conversations.


Introduction
As nurses in the oncology department, we generally think of ourselves as adjunct healers who help patients reduce their pain and who promote their recovery [1].Yet, some patients' problems have no medical solutions. These patients may express a readiness, willingness, or even a desire to die; they may ask us not to delay their deaths and may even ask us to help them die more quickly [2].
Cancer has become one of the high incidence diseases in China. In China, 55 people die of cancer every 10 min [3]. About 50% of the global cases of gastric cancer, liver cancer, and esophageal cancer come from China [4]. Although there are still significant gaps in China's basic medical conditions compared with developed countries, the 5-year survival rate of many patients with malignant tumors, such as breast cancer, thyroid cancer, bladder cancer, and renal cancer, has reached over 50% [5]. At the same time, the life expectancy has been prolonged and institutionalized (that is, hospice patients get regular and institutionalized treatment in health service institutions). Patients suffer more pain and pressure from treatment, including the side effects of radiotherapy and chemotherapy, physical reactions caused by the disease itself, and economic pressure caused by the disease [6,7]. These problems make patients lose their desire for survival and request to hasten death. Studies have shown that patients with advanced cancer have considered death due to physical pain, negative emotions, financial pressure of their family, etc. [8][9][10]. However, because of the influence of the Chinese traditional culture, social atmosphere, and medical model, the patient's right to die has not been well-protected in China [11]. In China, the conduct and manner of service of health care workers is restricted by law and health regulations, which means that all acts of treatment should be within the limits of the obligations imposed by law. There is no legal obligation for nurses to talk to patients about such topics as death, and therefore all adverse consequences of such behavior (e.g., patient suicide, medical disputes) are the responsibility of the medical practitioners. Many people dying of cancer do not really know their condition and do not ask whether they have the right to choose the manner of their death, and most of the patients' family members have a negative attitude toward death. They are unwilling to discuss relevant topics with patients and often choose to shift or avoid this discussion. Therefore, it is a common phenomenon in clinics for patients to express their "desire to die" demands to medical personnel, especially nurses [12]. However, when facing the death demands of patients, most clinical nurses do not know how to deal with the situation. They are not fully prepared for the corresponding discussion with the patient. The Royal College of Nursing (RCN) has prepared a guide on how to respond to patients' accelerated death requests to help nurses initiate and conduct these arduous conversations. However, there is still a lack of research on how nurses respond to patients' requests to hasten death in China. This study adopts the method of qualitative research to understand the cognition of cancer nurses concerning the patients' death request and their experience in dealing with it. The study will also analyze the difficulties and resistance that nurses encounter in dealing with such problems-and what support they hope to obtain-to improve the palliative medicine in China.

Study design, sampling, and recruitment
We interviewed 18 nurses from the Department of Oncology of a large hospital in Liaoning Province, China. We used purposive sampling to identify potential participants. The nursing manager of the Department of Oncology distributed the recruitment notice of this study to the WeChat group of nurses in the department. The notice contained the researcher's WeChat ID and mobile phone number. Nurses who wanted to participate in this study registered and filled in their personal information by calling and adding WeChat friends. Among the nurses enrolled, the researchers selected 18 respondents by random sampling subjects of this study who were recruited after obtaining the approval of the ethics committee. The interview began, after the respondents signed the informed consent form.

Interview guide
The research team determined the interview outline according to the purpose, and formulated a semi-structured questionnaire, after consultation (two professors of psychology, a permanent deputy director of health, and the director of the hospital coordination office), was determined as follows: (1) Have you ever experienced a situation in which patients appealed to you by saying, "I want to die" or by revealing that they sought an accelerated death, such as euthanasia? (2) What kind of patients usually make this appeal? How do you feel when the patient makes this request? (3) What do you think is the real meaning of the patient's death request? How do you judge, and what is the basis for your evaluation? (4) How do you respond to this demand? What is your real reason for doing this? How would you rate your response? (5) Do you need help with the knowledge and skills relevant to the patient's death request? What suggestions do you have for training-related content?
Two trained interviewers conducted all interviews to ensure the consistency of data collection. We conducted one-on-one interviews with the participants. Each interview lasted for 30-60 min. The interviews took place in the staff lounge or a vacant room of the department, which ensured the continuity of the interviews. The researchers made sound recordings and transcripts during the interviews and recorded the expression and body language of the respondents.

Data analysis
To ensure the integrity of information, the interviewer transcribed the interview content within 24 h of the interview. The data were analyzed by the Colaizzi seven-step analysis method [13], supplemented by NVivo 12.0 software. Using the set method, the two researchers continuously and repeatedly read and analyzed the same written data, then coded the data, compared the results with the original data, and finally formed a theme that reflected the respondents' cognition of the death wish, their coping experience, and their experience with tumor patients.

Results
The 18 respondents had an age range of 30-46 years and a range of 7-25 years in experience as a nurse; the length of time in medical oncology ranged of 7-20 years. Three of the 18 respondents have a master's degree and 15 have a bachelor's degree; 3 of them are nurse in charge and 15 are RNs. Table 1 shows the basic information of the 18 respondents. Four themes were found: (1) the nurses' cognition of the patients' death wish; (2) the coping style adopted by the nurses when the patients made their death request; (3) obstacles that prevented the nurses' response to the death request; and (4) suggestions on how to deal with the death request.

Be able to identify patients' requests to hasten death
Accurate identification of patients with a desire to die is the basis for taking effective measures. Most of the nurses said they could identify the patient's death wish through the patient's language, expression, and behavior. "Some patients will repeatedly emphasize that they want to go home, which is their way to express that they want to give up treatment" (N.3). "The character of many patients will change suddenly. I had a patient who was originally a mild person. During the sixth chemotherapy, I found that she became very grumpy, often said negative words, and didn't seek treatment as actively as before. After asking her family, I learned that she had tried to commit suicide at home" (N.7).

Insight into the true meaning of the patient's death wish
1) The death requests of some patients are expressions of physical pain or psychological pressure. "Some patients often express that they want to die, but interestingly, they are very active in their treatment and are willing to take the initiative to discuss their treatment methods and conditions with their doctors" (N.11). "Some people choose this way of venting because they are worried about the side effects of the treatment or because of the heavy financial burden of the family and great psychological pressure" (N.16).
2) The death wish is a temporary expression of one's inability to accept the changes brought by the disease, which frequently occurs in patients who are in the early stages of an illness or have just completed surgery. "I had a breast cancer patient who was very concerned about her appearance. When she came out of the mastectomy, she came to our department with a mental disorder. She always said she wanted to die. She thought beauty was a woman's life. But after three to four months, she was much better" (N.5). "There was a little girl in our department who had just got permanent colostomy. She often quarreled with her mother and said she was going to die. She couldn't accept herself if she couldn't continue to dance" (N.9). "I met a patient who was a truck driver before he got sick. After he got sick, he always talked to his family about his desire to die. He felt that it was death. Such patients are often well educated. "I used to care for an old man. He wrote his will in advance and was happy to discuss his funeral methods with his family. His family also respected his ideas" (N.5). "There are few such patients. I saw a patient persuading her daughter when I visited the ward. She hoped that her daughter would not let her own work and life be affected by her death" (N.13). 4) Rethinking life makes some patients want to change their future lifestyle. "Patients sometimes disclose something they once wanted to do; they feel sorry that they can't achieve it in this life, and hope to have a chance in the next life" (N.2). "A lung cancer patient said that he had been bad to his son, resulting in a bad relationship between his son and him. He hoped his son could forgive him, so he could die without regret" (N.8).

Inscrutable conditions
All participants said that they could not always understand the real intention of the patients' requests to hasten death. "I once cared for a patient. His family decided to hide his real condition from him. One day, he suddenly wanted to give up treatment. I still don't know why" (N.6). "Some patients have no sense of security, so they express their desire to seek help" (N.11).

How nurses deal with "death desire"
To help their patients feel more comfort Some nurses believe that improving the comfort of patients as much as possible can make their emotions develop in an optimistic direction. "I will pay more attention to the physical symptoms of patients, ask them if they have any physical discomfort, and discuss it with doctors in time" (N.1). "I know that chemotherapy drugs will lead to anorexia, vomiting, dizziness, and even changes in their mental state. I tell my patients that if they can't stand the side effects of chemotherapy, they can communicate with the attending physician in time and change the chemotherapy regimen" (N.3). Sometimes nurses would encourage their patients mentally. "I encourage my patients to improve their quality of life, live in the present, and cherish their lives" (N.9).

To divert patients' attention
Some nurses said that they would divert the patients' attention and prevent them from indulging in the thought about death. "I will try to find some topics that patients may be interested in to divert their attention, make them feel easy and happy" (N.4). "I'll try my best to make the conversation relaxed and happy" (N.15).

To get help from psychologists
Some nurses placed their hopes on psychological professionals. "Of course we'll try our best. If we can't help, we will seek the help of a professional psychologist" (N.4). "We will invite special psychological teachers to conduct psychological counseling for them" (N.5). "Our hospital has a psychological team. The head nurse will arrange for members of the psychological team to come to our department to perform psychological counseling for patients" (N.6).

Subjective reasons
1) Moral dilemma. The moral dilemma of nurses refers to the pain or psychological imbalance they feel when individuals know that they should take corrective action, but they cannot do it because of internal or external reasons [9]. "It's cruel to ask others to make a will or give up treatment. They come to the hospital for treatment. I think it's cruel to persuade others to give up treatment" (N.3). "Some patients become anxious and afraid because they don't know their real medical condition, It's immoral to deceive patients, but if I tell them their real condition, these patients may become negative, and their families may accuse me" (N.12). 2) Nurses have ambiguous feelings about their role. "Our nurses only do nursing and don't participate in topics pertaining to death. It's not the nurses who judge the life and death of patients, nor the nurses who make decisions on treatment. Most decisions and communication are done by doctors" (N.1). 3) Insufficient coping ability. "His pain was still not alleviated when he had been receiving radiotherapy. No matter how you persuaded him, it was useless, and we could not alleviate his pain" (N.2). "I think that when facing him, I could only conduct psychological counseling through language. I felt helpless" (N.8).

Objective reasons: no relevant policy support
There is lack of relevant laws in China and lack of relevant systems in hospitals. "Euthanasia or something, we don't have such rights. The law doesn't allow it. Even if the patient asks, we have to pull him back" (N.11). "I think this is a taboo thing in itself. If you have to say it out loud in the ward, it will affect the patient's mood. There are so many people in the ward, it's unrealistic to discuss this topic" (N.14).

To receive relevant training
Most of the respondents were troubled in this situation and said they needed relevant training to help them deal with it correctly. "I think we should carry out various trainings to let us understand the real reason why patients have make such demands and then deal with them symptomatically" (N.5). "It seems that this response is spontaneous; there are no norms and standards, and we don't know how to respond correctly" (N.10).

To get support from family members of patients
"First of all, if the patient has this demand, we should also conduct psychological counseling for the family members, so that the family members can accept it" (N.9). "The related diseases are in the older or elderly, and I think the opinions of the patient's family members are quite important" (N.8).

To promote multidisciplinary cooperation
Nurses do not receive adequate emphasis in China, so patients rely more on doctors. "It's better to have the participation of doctors, including discussing the patient's condition with doctors, so that the patient can understand the condition himself. It doesn't mean that all the conditions are concealed" (N.1). "Although many patients are willing to talk about death with us, they are not willing to listen to our suggestions, so it may be easier to involve doctors in the process" (N.13).

Recognize and attend to the practical significance of the death wish of tumor patients
The increasingly painful life state of the patients makes appeals for death increasingly prominent. It is a common clinical phenomenon for patients to say to the clinical nurses, "I want to die soon" or ask, "Why is euthanasia not allowed?" The results shows that nurses can identify patients' requests to hasten death, develop insight into the true meaning of their death requests, and believe that the death wishes of cancer patients are essentially an appeal to the quality of life, the dignity, and the significance of existence. This is consistent with the meaning of hospice humanitarianism, that is, to meet the needs of patients in the physical, psychological, social, and spiritual fields and to improve the quality of death. However, the coping style is mainly negative, which is similar to some relevant research results that show that oncology nurses care about their dying patients and cannot face their deaths calmly for various subjective and objective reasons [14]. Hospice care focuses on patients and families, optimizes the quality of life by predicting and preventing pain when therapy is ineffective, and meets the needs of patients for a dignified death [15]. The essence of a dignified death is an appeal to the right to death, so a refusal to grant the patients' death request is essentially the neglect of the patients' right to die. Some researchers believe that euthanasia, the realization of the right to death, is a special form of hospice care [16][17][18]. The harmonious combination of the two can constitute the best mode of human death. Therefore, understanding and paying attention to the death request of tumor patients is not only the inevitable requirement of hospice care, but also the way to realize the right to die.

Practical dilemma of oncology nurses when coping with the death requests of patients with advanced cancer
The obstacles that prevent oncology nurses from helping patients who ask them to hasten death are affected by both objective and subjective reasons. The objective reasons include culture, religion, ethics, and even politics. There is a lack of appropriate human and instrumental resources in offering effective palliative care to the patient, as well as an insufficiency in training about specific skills on palliative care and current medical, ethical, and legal implications. Time and workload constraints, conflicting with the necessity of the grieving process, contributed to moral distress in palliative care providers also [19]. The traditional death concept of loving life and hating death and the priceless perspective of medical ethics require medical staff to prolong the patient's life at all costs. Any act of terminating life is wrong, but clinical nurses will witness and come into contact with all kinds of trauma and pain of dying patients, resulting in moral dilemmas [20]. Some studies have shown that providing patients with "active nursing" that is groundless or has no therapeutic effect or cannot make patients independent of life support has become the main source of nurses' moral dilemmas [21].
This research shows that nurses have problems with symptom control, poor results in alleviating psychological distress, and difficulties in carrying out death education. The reason is that the general environment for hospice care needs to be improved [22]. A WHO report points out that the lack of training of health professionals in the field of palliative care has seriously hindered its development. Therefore, by formulating relevant systems, nursing managers can incorporate hospice care into the core courses of continuing education and training for nurses in oncology departments and carry out publicity and education for volunteers and the public so that the public and medical personnel can understand and pay attention to the death demands of patients with advanced cancer in their effort to respond effectively.
China still lacks relevant policy or legal support for alleviating medical treatment and the right to death, because of the deep-rooted traditional concept of death [23]. We can learn from the practices of other countries, such as Japan, where they have set up special social welfare institutions to help patients with accelerated death needs. These social welfare institutions send professionally trained social workers according to the specific conditions of those who need their help. Italy has introduced legislation for advance directives-Rivista di filosofia del diritto. This not only protects the rights of the patient but also support the discussion on advance directives and bridge the gaps that currently persist in handling ethical issues [24]. This Act has been in force since 2018 and we can refer to the Italian experience to try to develop a legal framework suitable for China.

Preparing clinical nurses to effectively respond to hasten death is an enlightened policy
Some studies have shown that based on theoretical training through scenario simulation training and group discussion, it helped the nurses to reflect on the meaning of death and life, and cultivate their problem-solving ability to better deal with death in clinical practice [25]. Some studies have also integrated existing hospice care tools to form a toolkit to evaluate the symptoms and severity of hospice patients and the grief of family members to help nurses who have an insufficient death response improve their ability to identify and manage the needs of hospice patients [26]. Therefore, managers should actively provide relevant resources to help clinical nurses improve their hospice care ability by organizing teaching training, scenario simulations, and the integration of tools into a toolkit. Hospice care is a multidisciplinary collaborative practice.

Conclusions
In contrast to previous studies, this paper highlights the notion that Chinese oncology nurses have a strong desire to help patients alleviate their suffering and maintain their dignity. They have accumulated some experiences, but they lack the guidance of theoretical knowledge. They encountered serious dilemmas when delivering care because of Chinese cultural sensitivity. It may be of value for governments and hospital leaders to pay more attention and provide specified training programs for Chinese nurses working with dying cancer patients on issues relevant to palliative care skills.