"I have the right to determine how I die": A Qualitative Research on Chinese Cancer Patients' attitudes on Death and Demands for Good Death

doi:10.21203/rs.3.rs-2322049/v1

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"I have the right to determine how I die": A Qualitative Research on Chinese Cancer Patients' attitudes on Death and Demands for Good Death

https://doi.org/10.21203/rs.3.rs-2322049/v1

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Objectives In order to expand palliative care in China and improve the quality of life and death of Chinese cancer patients, the purpose of this research is to investigate the attitudes of Chinese cancer patients toward death, as well as their requirements and expectations of a good death.

MethodsPhenomenological research was used to conduct in-depth interviews and data analysis on the topic of death and good death of 16 cancer patients.

Results Cancer patients' attitudes towards death can be divided into three types: open-faced, negative and pessimistic, complicated psychology of acceptance and hope; The demand for good death includes four themes and nine sub-themes: physiological needs (to relieve physical pain), psychological needs (to choose autonomy, to maintain dignity, to satisfy wishes, family hopes, and arrangements for matters related to death), spiritual needs (inner comfort), and social needs (financial situation, medical system support).

Conclusion Medical staff should deeply understand the cognition and attitude of cancer patients towards death, guide patients to express their dying feelings and physical and mental needs, and strive to seek the cooperation of patients' families and other professionals, such as lawyers and psychotherapists, so as to meet patients' expectations of good death at all levels. China should increase the training of medical staff in knowledge and skills of good death, set up palliative medical institutions and improve relevant laws, safeguard patients' rights and help patients achieve good death.

cancer

Palliative medical treatment

Death attitude

Good death demand

Qualitative research

What is already known on this topic

1."good death” is the ultimate goal of palliative care,"Good death" is an important element of the effective guarantee of human autonomy in life.

2.Based on previous studies we found that Chinese nurses want to help patients achieve "good death" and they have accumulated some experience.

What this study adds

1.Chinese oncology patients' attitudes toward death have changed somewhat, and they are no longer as afraid of death as they used to be.

2.good death needs of patients are comprehensive, diverse and personalized.

How this study might affect research, practice or policy

1.This study could advance the implementation of Advance Care Planning(ACP) programs in China.

2.This article can inspire caregivers of patients with malignancy to focus more on the patient's end-of-life needs rather than meaninglessly prolonging the patient's life.

Cancer is a major disease that seriously threatens human life and social development. According to the statistics of the World Health Organization (WHO) in 2019, cancer is the first or second leading cause of death in 112 countries and the third or fourth leading cause of death in 23 countries [1–2]. In recent decades, with the change of disease pattern and the aging trend of population, China's cancer burden is increasing day by day. In February, 2022, the National Cancer Center released the latest national cancer statistics, which showed that in 2020, new cancer cases and deaths in China accounted for about 23.7% and 30.2% of the global cancer incidence and deaths in that year, both of which were higher than the proportion of Chinese population to the global population (18.6%)[3]. In 2020, the number of new cases and deaths in China ranked first in the world, and China has become a veritable "cancer power".

On October 6th, 2015, the Economist Intelligence Unit measured the quality of palliative care in 80 countries. The death quality index of Chinese mainland ranked 71 [4], and the death quality of malignant patients was poor. With the increasing number of cancer patients, it has become a topic of concern in Chinese society to improve the quality of life of patients with cancers and meet their "good death" needs. Some scholars believe that "good death” is the ultimate goal of palliative care [5–6], which aims to appeal to people to pay attention to and support the living conditions of end-stage patients. It embodies the respect for life and the civilization and progress of human society. At present, there is no uniform standard for the definition of "good death" all over the world. The most accepted definition currently used by health practitioners is:A situation in which the dying process and the moment of death are in accordance with a person’s preferences and wishes. The definition may vary among different stakeholders, e.g., patients, caregivers, and health-care professionals, in different sociocultural contexts, and may change over time. In China, the meaning of "good death" in Chinese traditional culture is close to "shàn zhōnɡ" in Chinese [7], which means that people can die peacefully and painlessly without any regrets. Weisman [5] thinks that good death should include patients being aware of death, accepting death calmly, respecting and satisfying their own wishes, arranging their own time of death independently, and passing away in a comfortable state. Studies have shown that good death nursing can relieve the anxiety, depression, fear and other bad emotions of malignant patients, so that they can maintain their final dignity and improve their final life quality [8]. At present, however, there are considerable difficulties in the promotion of good death nursing in Chinese hospitals. Many previous scholars have studied this phenomenon and have come to some conclusions[9]. Firstly, the Death-Denying Culture is deeply rooted in China; Secondly, China's clinical work is fast-paced and intensive, and nurses often lack the time and opportunity to communicate with patients, ignoring their psychological state and good death needs. But my colleagues and I have found that these reasons do not seem to be the real reason why "good death" is being held back in China, although the death-deny culture is deeply rooted in China, we have found that in the last 10 years documentaries and films on topics such as "euthanasia", "palliative care" and "good death" have become very popular in China. For example, the documentary "A Good Death" directed by Paul van Ness has been very popular in China. it has been played more than 50 million times in China and received a superb rating of 8.3 out of 10, and in the last five years Chinese directors have started to make films on euthanasia and good death. Adam Smith, a Scottish philosopher and economist, said: The market is always generated by the demands. In this study, we used a qualitative methodology to deepen our understanding of how oncology patients really feel about death and their needs. By understanding the subjective feeling of death and the demand for good death of Chinese cancer patients, this paper provides reference for the next step of formulating and implementing individualized good death intervention measures for patients and formulating universal malignant nursing programs suitable for Chinese people.

Study design,sampling,and recruitment

From April 1, 2022 to June 30, 2022, we carried out this research in a cancer treatment center of a large hospital in Liaoning Province, China. After being reviewed by the hospital ethics committee, we made posters of the purpose, significance, basic requirements of the research objects and the contact information of researchers (including WeChat QR code, mobile phone number and email address) and pasted them at the outpatient hall of the hospital and at the entrance of each nursing unit of the treatment center. Patients who are willing to participate in this research can register and fill in their personal information by calling and adding WeChat friends. The researchers screened the enrolled patients according to the inclusion criteria and exclusion criteria. Inclusion criteria: ① Pathological diagnosis of cancer; ② Patients are aware of their illness, and their age is ≥ 18 years old; ③ No hearing, memory and cognitive impairment; ④ Have certain language expression ability and understanding ability. Exclusion criteria: ① Patients with critical and unstable condition; ② Patients have severe liver and kidney diseases, cardiovascular diseases or other serious diseases. We finally selected 16 interviewees, and after these interviewees signed the informed consent form, the interview began.

Interview guide

On the basis of literature review, group discussion, expert consultation (two psychology professors, a permanent deputy director of health, director of hospital coordination office) and pre-interview, the research team determined the interview outline, the contents of which are shown in Table 1.

Table 1

Interview Outline
	Question
Q1	How are you feeling now? Would you like to share with me what you need most at this moment?
Q2	Has anyone talked to you about death? Would you like to talk about this topic?
Q3	Please talk about your views and attitudes towards' death'
Q4	What help do you want in the last stage of your life? What do you want your relatives and friends to do for you during this time?
Q5	At the last moment of your life, what is your most desired treatment? Try to rescue, even if it is traumatic? Or let nature take its course and not do invasive rescue?
Q6	Do you have anything that you can't worry about at present or a wish that you haven't realized yet?

To ensure the consistency of data collection, all interviews were conducted by two trained interviewers. We conducted face-to-face semi-structured in-depth interviews with participants. In order to avoid interference and ensure the continuity of the interview, the interview place is selected in the empty ward and interview room of the patient's department. Before the interview, fully explain the purpose and significance of the interview to the interviewee, and establish the trust relationship between the two sides. The interviewee agrees to start the interview after recording the whole process. During the whole interview process, pay attention to observing the interviewee's nonverbal behaviors such as expression, intonation, speech speed, tone, body changes, etc., and record the relevance with the conversation content at that time. Interviewers should adopt a neutral attitude and adopt various forms of communication skills, such as encouragement, eye contact, probing, silence, etc., to ensure that interviewees fully express their opinions and expose their views, and provide effective data support for later data analysis. Each interview lasts about 30–60 min. Within 24 hours after the interview, the patient's interview recordings are recorded word by word. Colaizzi's seven-step analysis method is used to extract, code, explain and comprehensively analyze the data, sublimate the theme and get the research results.

Ethics

This study was approved by the hospital ethics committee. Before the interview, evaluate the patient's physical and psychological condition, inform in advance that the interview content has no correlation with his own condition, and protect the patient's privacy by replacing the name with the number.

Quality control

In order to grasp the true feelings and thoughts of patients more accurately and comprehensively, researchers should establish a good trust relationship with patients before collecting data. In addition, the two researchers who participated in the interview and data analysis have a qualitative research foundation, are familiar with their research methods and skills, communicate and discuss when there are inconsistencies in sorting out and analyzing, ask the interviewees for verification and supplement, respect the facts, and do not make subjective judgments.

Among the 16 interviewees, there are 8 males and 8 females, aged between 34 and 72, and the duration of illness is between 1 and 4 years. Table 2 shows other basic information of interviewees. Cancer patients' attitudes towards death can be divided into three types: pessimism, optimism, and transcendental enjoyment. For the needs of good death, we have identified four themes (including nine sub-themes): (1) physiological needs (to relieve physical pain); (2) Psychological needs (choice of autonomy, maintenance of dignity, satisfaction of wishes, family expectations, arrangements for matters related to death); (3) Spiritual needs (inner comfort); (4) Social needs (economic situation, medical system support).

Table 2

Basic information of 16 respondents
Information code	Gender	Age	Diagnose	Time of diagnosis (year)	Marital Status	educational background	Occupation	Religion
N.1	male	56	STAD	3	In marriage	BA	labour	No
N.2	male	34	COAD	2	unmarried	MS	Comp.Engr	No
N.3	female	52	ESCA	3	In marriage	post-secondary	merchant	No
N.4	male	65	STAD	3	Funeral	post-secondary	truck driver	No
N.5	female	72	COADREAD	2	Funeral	D.LITT	prof.	No
N.6	male	53	STAD	3	In marriage	post-secondary	Farmer	No
N.7	female	47	BRCA	3	divorce	LLM	lawyer	No
N.8	female	67	LUAD	4	In marriage	post-secondary	merchant	No
N.9	female	52	ESCA	1	In marriage	BA	high school teacher	No
N.10	male	37	DLBC	3	In marriage	BS	labour	No
N.11	female	49	BRCA	4	In marriage	post-secondary	labour	No
N.12	male	63	LIHC	3	In marriage	post-secondary	merchant	No
N.13	male	51	LUSC	4	In marriage	post-secondary	labour	No
N.14	female	47	LIHC	2	In marriage	BA	civil servant	No
N.15	male	63	STAD	3	In marriage	BA	civil servant	No
N.16	female	44	THYM	3	In marriage	BA	accountant	No

Attitude of cancer patients toward death

This study found that the vast majority of patients with cancers can accept death as a necessary process of life. A few patients are pessimistic, indicating that they can't accept death, while others have a complex mentality of acceptance and hope. Some patients believe that the proper hope of survival can be transformed into internal motivation, and the unfinished wish can be turned into action.

1)Calm

The study found that some patients can accept death calmly, and five patients used the descriptions of "normal", "acceptable" and "indifferent" when talking about their attitudes towards death, and considered that death was an inevitable natural law, neither pessimistic nor positive. N11: "Life and death are things we can't decide. It's a very normal thing." N4: "I don't care anyway. What can I do if I live for a thousand years?" N5 "Human death is an objective natural law, and each of us should accept it".

2) Pessimistic

Three patients used the descriptions of "lost" and "unacceptable" when talking about their attitude towards death, and one patient cried during the interview. N7: "I feel lost. I don't want to die but there's nothing I can do." N2: "Until now, I can't accept the fact that I'm going to die. I suddenly got this disease at such a young age, and I feel everything is sudden." N16 (crying) "Oh, my God! What did I do wrong? Why did God let me die at a young age! "

3) The complex psychology of acceptance and hope

Eight patients can be classified into this category. These patients said that they would be more active in treatment and try their best to survive if the economic conditions permit. Some patients with better symptom control still expect miracles and hope to prolong their lives.

N3: "Our family's condition is not bad. First, we don't have to consider economic problems. Second, we want to have a high quality of life. Before the onset of illness, we often do sports and travel. I just hope that we can get all the treatments and live like normal people." N14: "Every day I live now is what I earn. I just want to make my daily life meaningful. This is what I am. I want to find ways to face something positively." N: "Although I know that I have cancer, now medicine is developed, and many new drugs are prescribed every year. Doctors all say that it is a chronic disease. Maybe like some patients, I will be fine for 10 or 20 years."

Need for good death

Theme 1: Physical needs

The vast majority of patients said that the most important problem to solve at this stage is to reduce the physical pain, hope that at the end of life pain, dyspnea and other symptoms can be effectively controlled.

N1: "I don't want so much pain. If possible, I really want to be euthanized. A needle can solve the problem without so much pain. Now 12 Dorregis barely manage the pain." N7: "At present, the most need to analgesia, not so hard can, most hope to walk comfortably." N12: "Most want to control the pain, a good sleep, pain you really wish to die, too uncomfortable."

Theme 2: Psychological needs

Choice of autonomy

Patients want to be able to take control of their own medical decisions, have the right to determine their own fate, and avoid overtreatment. N1: "I don't want to be intubated. There's no point in doing that. It'll only add to my pain." N8: "Oxygen can be given, fluids can be given to maintain nutrition. Don't put me on a ventilator, and don't leave a lot of tubes on me. I want to be able to leave with dignity." N11: "I hope to let nature take its course, don't do so many meaningless things, salvage can not come back waste money and ugly"

A small number of patients believe that we should try our best to save lives. N3: "We have money, we can do as much as we can, in case we can succeed."

To maintain the dignity

Most of the patients expressed their gratitude to their families for their support and care, but also felt guilty and uneasy about increasing the burden of family economy and care after the disease. They did not want to become a burden to their families. They hoped that they could take care of their daily lives independently and maintain the minimum dignity of being human as normal people. N7: "I don't want to trouble my family if I can. I asked an escort if I was in a bad state recently. I don't want to ring the bell for him if I don't fall down." N10: "As a man looking at his wife so hard to take care of the children I feel particularly guilty, I have no income now, how bashful to trouble the family again" N15: "My family in order to see a doctor spent a lot of money, my son is not easy I this father's heart know, can not trouble him will not trouble him."

Meet the desire

Patients' wishes before dying can be achieved, without regret, can make patients tend to be peaceful and satisfied, improve the quality of life at the last stage. N3: "I have been doing business all my life, and I have never had a family trip together. I really hope that when the epidemic is over, my family can go to Inner Mongolia to see the grassland." N4: "We want to get together with our former comrades. We go to a party in a city every year. This year we hope to have a chance to attend." N13: "I really want to see my daughter get married! I'll be happy to see her marry and have someone take care of me! '

Family hope

Influenced by thousands of years of Confucian culture, Chinese people's concept of family is deeply rooted in their bone marrow. Most patients weaken their personal roles, and their social relations focus on family. Therefore, even when life is about to end, whether the family members can avoid internal conflicts, forget the pain, and live an active and independent life directly affects whether they can achieve good death. N1: "I'm more worried about my mother. She doesn't know I have cancer yet, and I'm the only son she has." N6: "I'm most worried about my wife. N16: "I don't trust my son. He is about to take the college entrance examination. I am really worried that my sudden death will affect his life."

Arrangements for death related matters

Death is a very serious matter in traditional Chinese culture. In this study, all patients made rigorous and comprehensive arrangements for death-related matters, including the distribution of inheritance, funeral rituals, the choice of death place and the disposal of the body.

N5: "I have made my will and told them not to have a funeral or buy me a plot and to scatter my ashes at sea." N15: "I have told you, all the property to my son, to bury me in the ancestral grave." Some patients are afraid that their spouses and children cannot accept the fact that their loved ones are about to leave, so they will turn to their brothers to deal with their future affairs. N16: "I have authorized my brother to arrange my affairs. I told him to take my ashes back to Anhui (another province in China) if I die." N9: "I left everything to my eldest brother. I didn't tell my daughter, for fear of affecting her mood."

Theme 3: Spiritual needs

All the patients in this study expressed that they would like to communicate more with their families and patients, share their physical and mental feelings and discuss their illness with medical staff. N15: "Before and the wife's character is not always noisy, now just know the precious family in the side, in the heart or hope she can come to see me more, talk." N8: "I often comfort other patients and tell them not to be afraid, they should enjoy their lives and don't leave regrets. In the process of communication, I feel that my sharing can help others, which is quite satisfying and makes me have a deeper thinking about life." N3: "You (medical staff) work very hard and are busy like a top every day. Today, I am really happy to sit down and chat and listen to our nagging. I hope we can have more such opportunities in the future."

Theme 4: Social needs

State of the economy

Due to the long course of cancer and repeated hospital admissions, patients face great financial pressure, and they have to consider financial issues when choosing treatment and care options. N9: "We treat diseases in different places, and the social security reimbursement rate is very low. Like the latest immunotherapy, most of them are self-funded and very expensive, so there is no money for further treatment when we see the hope." N10: "After I got sick, I couldn't work. I didn't have a source of income. The mortgage on our house hasn't been paid off.

Health policy

The lack of basic health facilities and the shortage of hospital beds have caused a lot of distress to patients. N1: "I have a catheter on my body. Every time I come to our hospital for maintenance, I have to ask my son to bring me by car. Otherwise, I have to take two hours by car. N7: "Our hospital is so good, beds are very tight, almost every time I am admitted to the hospital, I have to wait and can't do anything about it. Sometimes I am really helpless. The community hospital can't solve my problem, and my family won't deal with it at home."

3.1 Expectations and needs of good death patients with end-stage chronic diseases are diversified and comprehensive

This study found that the expectations and needs of good death patients with end-stage cancer include physical, psychological, spiritual and social aspects, which are consistent with the related needs of terminal patients with other chronic diseases [10]. This study found that physical needs took the first place in the four aspects of needs. All patients mentioned pain control and symptom management, and patients' physical needs were free from pain. The patient's psychological needs focus on a peaceful and peaceful death after fulfilling his or her unfulfilled wishes and not causing trouble to others, hoping that his or her death will not be a burden to his or her family. This study found that there was some overlap between spiritual needs and psychological needs, and patients often sought spiritual peace to alleviate the fear and sadness of death.

Most patients want to maintain self-esteem, maintain good self-perception, manage their emotions, and meet their spiritual needs. In addition, good family, social, and medical relationships, as well as financial assistance and various systems of support, are also important to promote the realization of good death for patients.

3.2 Expectations and demands for good death of end-stage patients with chronic diseases are personalized and subjective

The results of this study show that patients' expectations and needs for good death are subjective concepts, which are consistent with previous studies that stated that good death is highly individualized [11]. Four aspects of good death expectations and needs differ from patient to patient, such as arrangements for death-related matters. For death-related arrangements, some respondents want to stay at home or even go back to the place where they were born, while others think it is better to stay in a hospital. In the face of decision-making power, all patients in this study were eager to have autonomy in the decision-making process, but their performance was different. Patients also have different positions on the topic of death. For example, there are significant individual differences in whether to carry out rescue in the final stage, whether there are people present at the end of life, and maintaining the hope of survival, which is consistent with other studies [12]. Different patients have different expectations and needs for good death, possibly due to their cultural backgrounds, family values, personal roles, and experiences. It is also found in this study that respondents attach more importance to family cohesion and emphasize the importance of family relations, which is related to the influence of Confucian culture that Chinese people have received for a long time. This is different from European and North American countries with diversified worship system, emphasis on religious belief and spiritual needs, and emphasis on the importance of spiritual needs [13]. It is found in this study that good death is not the same as hospice care, which advocates no meaningless disease treatment for patients [14]. However, respondents in this study did not explicitly mention this view on the expectations and needs of good death, and even some patients were eager to continue receiving active treatment [15]. In other words, Good Death emphasizes the autonomy of patients. Even though family members or doctors may be asked to make decisions on behalf of patients, the subjective will of patients is the prerequisite for the realization of Good Death. Identifying the wishes and preferences of patients can better provide patients with appropriate Good Death care.

3.3 Good Death expectations and needs of patients throughout the end stage

Achieving good death is a process that meets the needs of patients both during the death process (terminal stage) and at the time of death (time point) [16–17]. Good death is also a process of ensuring that internal qualities such as physical comfort are met, as well as external qualities such as autonomy, meaning of life, preparation, and interpersonal relationships are met. This study found that patients hoped to be able to prepare for death as soon as possible. They hoped to have time to say goodbye to loved ones, explain their affairs, participate in decision-making, solve unfinished business, have a good family relationship, harmonious doctor-patient relationship, get support, etc. It also includes the needs of the patient at the time of death, such as the body being intact, painless and quick at the time of death, death occurring during sleep, and the implementation of good Death covering specific aspects of the patient's experience both during the dying process (terminal stage) and at the time of death (point in time). To summarize the statements made by the respondents in this study, we found that a high-quality death process (the end-of-life stage) plays a key role in good death.

3.4 The influence of traditional Chinese culture on good death

Due to the influence of many factors, such as history, geographical environment, race, etc., a nation often forms production and lifestyle different from other nations. On this basis, it forms its own death attitude and wisdom towards death and life problems. Chinese people's thinking about death can be traced back to Spring and Autumn Period (770 − 221 BC ), among which the most representative and mainstream is the Confucian ideology represented by Confucius. There are Confucius Institutes all over the world today, and the Confucian culture is being exposed to a growing number of people. The Confucian culture thinks that "death is the greatest misfortune" and takes a "shelving" attitude towards death. As Confucius said if you don't know why to live, how can you know how to die? Which means “I still don't know how to live well. Why should I discuss death now?” So far, we haven't found any traditional Chinese cultural classics that talk about death. Thus Chinese people have always been confused and at a loss about death because we have adopted an "ostrich policy" for a long time. However, with China's opening and development, an increasing number of Chinese people begin to talk about death, and they want to have the right to decide how they will die, they desire to develop palliative care and even legalize euthanasia in China. Their purpose in doing so is to finally get good death. In this study, we found that almost all patients have a need for good death, but they don't get professional help.

Three important conclusions were drawn in this study: first, while understanding the attitude towards death, we extracted four themes of good death maintenance needs, and found that the good death needs of patients are comprehensive, diverse and personalized; Second, patients want more autonomy in the end of life they want their unfulfilled wishes to be fulfilled, and they want to be able to participate in death-related arrangements; Third, the concept of good death is different from palliative care. Palliative care emphasizes no meaningless disease treatment for patients, while good death emphasizes respecting patients' subjective will.

This study is a qualitative study, which only interviews inpatients and lacks a specific analysis of the similarities and differences between community and home patients' needs for good death. In the future, more studies on different populations can be carried out to promote the further development of good Death in China.

Funding

No funding was obtained for this study.

Competing Interests

We declare that we have no conflict of interest.

Author Contributions

Z. C. ,J. D. and J. Z.were involved in the conception, design, and conduct of the study and the analysis and interpretation of the results. Z. C.wrote the first draft of the manuscript, and all authors edited, reviewed, and approved the final version of the manuscript. H.Z. is the guarantor of this work and, as such, takes responsibility for the integrity of the data and the accuracy of the data analysis.

Ethics approval

This study was performed in line with the principles of the Declaration of Helsinki. Approval was granted by the Ethics Committee of Jinzhou Medical University (Date:2021/10/27/No.KYLL202128).

Consent to participate

Informed consent was obtained from all individual participants included in the study.

Guarantor statement

We confirm that the manuscript has never been previously presented at a meeting, published in abstract form in the proceedings of a meeting, or posted on a preprint server.

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No competing interests reported.

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"I have the right to determine how I die": A Qualitative Research on Chinese Cancer Patients' attitudes on Death and Demands for Good Death

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Abstract

Key Messages Box

Introduction

Materials And Methods

Study design,sampling,and recruitment

Interview guide

Ethics

Quality control

Results

Attitude of cancer patients toward death

1)Calm

2) Pessimistic

3) The complex psychology of acceptance and hope

Need for good death

Theme 1: Physical needs

Theme 2: Psychological needs

Choice of autonomy

To maintain the dignity

Meet the desire

Family hope

Arrangements for death related matters

Theme 3: Spiritual needs

Theme 4: Social needs

State of the economy

Health policy

Discussion

3.1 Expectations and needs of good death patients with end-stage chronic diseases are diversified and comprehensive

3.2 Expectations and demands for good death of end-stage patients with chronic diseases are personalized and subjective

3.3 Good Death expectations and needs of patients throughout the end stage

3.4 The influence of traditional Chinese culture on good death

Conclusion

Limitations

Declarations

References

Additional Declarations

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