Healthcare workers' experiences of participating in life-sustaining treatment decision-making in a Chinese intensive care unit：A qualitative study

doi:10.21203/rs.3.rs-4996909/v1

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Research Article

Healthcare workers' experiences of participating in life-sustaining treatment decision-making in a Chinese intensive care unit：A qualitative study

https://doi.org/10.21203/rs.3.rs-4996909/v1

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Background: With the aging of the population and advancements in medical technology, making decisions about life-sustaining treatment (LST) poses emotional dilemmas for physicians and nurses.

Methods: A phenomenological qualitative research method was used. Ten nurses and ten doctors were selected from the intensive care unit of a tertiary hospital in China using convenience sampling for face-to-face semi-structured interviews, after which the interviews were recorded verbatim, and themes were identified and coded using Colaizzi analysis.

Findings: The decision-making experience of healthcare professionals withdrawing ICU patients from LST can be categorized into three themes and six subthemes, including healthcare professionals' perceptions of LST (professional and humanitarian perspectives), factors influencing healthcare professionals' decisions to withdraw LST (personal factors of healthcare professionals, decision-making conflicts, lack of preparedness, and ethical dilemmas), and healthcare professionals' behavioral preferences for performing LST (nurses' behavioral preferences, physicians' behavioral preferences).

Conclusion: Decision-making about whether a patient needs to withdraw LST can result in decision-making dilemmas due to differences in healthcare personnel's personal attributes and decision-making conflicts; secondly, healthcare personnel have complex multiple emotional experiences during the engagement process, and nurses do not have a high level of voice in the decision-making team due to the complex clinical environment and professional constraints; and lastly, trust between healthcare personnel and patients needs to be strengthened. In the future, it is hoped that clinical staff in the healthcare team can emphasize interdisciplinary cooperation and enhance the trust between healthcare professionals and patients from the patient's perspective.

End of life

Life sustaining treatment

Withdraw

Intensive care

Critical care

Decision-making

Doctors

Nurses

Qualitative research

With the rapid development of medical technology, life-sustaining treatment (LST) techniques often lead to a decrease in the quality of life and an increase in the economic burden of patients while bringing hope for their survival, which is contrary to the “patient-centered” healthcare service model. Therefore, life-sustaining treatment (LST) decision-making poses an ethical challenge in Chinese Intensive Care Units (ICUs), and the need for support for healthcare professionals to make LST decisions has increased. LST is a part of end-of-life planning, and although many studies have been conducted on end-of-life decision-making in China, including studies on influencing factors in quantitative studies^1–3 and decision-making experiences in qualitative studies^4–6, there are not yet clear ethical guidelines on end-of-life decision-making and related education and training on the way to communicate with the patient's family members when withdrawing the LST, so healthcare workers in China tend to make relevant behaviors based on their own experience of clinical practice and their personal behavioral preferences to make relevant behaviors.

Family members play an important role as surrogate decision-makers on whether a patient needs LST when the patient's wishes cannot be verified⁷. Most researchers² in China believe that physicians and nurses guiding family members or surrogate decision-makers during the decision-making process is considered to be the best end-of-life practice. Most Chinese clinical practitioners believe that the physician or intensivist in charge on the day should be the key decision maker. The role of the nurse is to provide the physician with information about the patient's condition and to act as the patient's advocate to express the patient's wishes, thus providing an important basis for the physician's decision-making process. Intensive care unit physicians believe that factors affecting life-sustaining treatment decisions include resource constraints⁸, different physician assessments of patient preferences, and physician personality and values⁹. Nurses' years of nursing experience, gender, and time in hospice care are relevant factors that facilitate end-of-life decision support¹⁰. However, differences in the specialties of physicians and nurses often result in differing preferences for decisions about whether or not the patient needs to be withdrawn from LST ¹¹. In Chinese intensive care units, nurses usually face busy nursing workloads and lack sufficient time and energy to participate in the decision-making process, and the lack of clarity of legal and ethical guidelines often makes nurses troubled and concerned about their involvement in end-of-life decision-making⁵.

Laws and regulations related to life-sustaining treatments are still a gap in China's national legislation, but in 2022, for the first time, the “right to make end-of-life decisions” was written into Shenzhen, China's Medical Care Regulations, with living wills consisting of: first, what medical care they want or do not want; second, how they want to be treated by others; fourth, what they want their next of kin to know; and fifth, who they want to help them.14 Although the “right to make end-of-life decisions” came into effect in Shenzhen in 2022, it was not until then that the right to life-sustaining treatment became effective. Third, how they want to be treated; fourth, what they want their next of kin to know; and fifth, who they want to help them¹². Although the “right to make end-of-life decisions” will come into effect in Shenzhen in 2022, there are still many challenges to the training of personnel and popularization of the law, as well as the need to change the traditional mindset of the Chinese people. The biggest obstacle to the implementation of living wills is the shift in traditional Chinese attitudes. Although the Act has created a precedent for local legislation on living wills in China, it has yet to provide detailed provisions on the form and content of implementation, and there is still a long way to go for the implementation of the “right to make end-of-life decisions” in the future. At present, the decision-making group of end-of-life decision-making is still the patient's family. However, due to the traditional culture, emotional factors, clinical environment and other limitations, family members are prone to negative decision-making behaviors and cognitive impairment and other problems, and unable to maximize the interests of the patient^13–15. Therefore, decision-making recommendations of healthcare professionals are often family members' proxy decision-making to play a dominant role, explore healthcare professionals' different preference behaviors in decision-making and analyze their impediments and facilitators in withdrawing LST decision-making is an important part of promoting shared decision-making between healthcare professionals and patients.

Current research on end-of-life decision-making focuses on patients' family members, and there are relatively few studies on healthcare professionals' participation in withdrawing LST. This study interviewed healthcare professionals involved in withdrawing LST to explore the factors affecting end-of-life decision-making and to understand the preferred behaviors of doctors and nurses in decision-making, with a view to providing references for improving the quality of healthcare work as well as the level of end-of-life decision-making involved in proxy decision-making, and safeguarding the autonomy of patients.

2.1. Design

The research methodology utilized a qualitative design with a descriptive phenomenological research approach. Phenomenological research methods focus on the subjective experiences of humans and their interactions with others; it must take place in the natural environment of the participants. The study followed the uniform criteria of the 32-item checklist for reporting qualitative research (COREQ).

In this study, we used a semi-structured interview method that allowed each participant to share his or her perspective without interruption, while allowing us to explore each person's different subjective experiences to optimize the quality of end-of-life decision-making. To characterize the participants' experiences, we used a constructivist perspective that views reality as socially constructed. After the interviews, we conducted an inductive reflective analysis of the interview data through the Colaizzi seven-step framework¹⁶ to integrate participants' experiences of practice and decision-making expectations.

2.2. Participants

Doctors and nurses working in the ICU of a tertiary care hospital in China were selected from February 2024 to June 2024 for this study. The study was conducted in several private and relaxed environments in the hospital. The private and relaxed environments were conducive for participants to fully express their opinions, thus enabling the researcher to collect sufficient evidence. The inclusion criteria of the study participants were determined based on their level of clinical experience and familiarity with the work environment: (1) working as an ICU end-of-life decision aid; (2) working in ICU medical and nursing care for ≥ 5 years; (3) voluntarily participating in this study and signing an informed consent form; and (4) being able to verbalize their experiences. Exclusion criteria: (1) Nurses or doctors who were not on duty due to vacation; (2) Nurses or doctors for further study or training. The sample size was based on the criterion that no new themes would emerge from the data analysis. 20 healthcare professionals were finally included in this study, including 10 nurses and 10 doctors. 20 respondents filled out the informed consent form for participating in this interview activity and were numbered in alphabetical order, with nurses represented by “N + serial number” and doctors represented by “D + serial number”. Demographic details are shown in Table 1.

Table 1

Participant demographic data.
Variable Level	Participants N = 13
Gender
Male	13
Female	7
Age(years), range	26–38
ICU experience(years), range	1–19
Educational level
Bachelor's degree	9
Master's degree	7
Doctoral degree	3
Title
Associate Senior and above	8
Below Deputy Senior	12
ICU, intensive care unit.

(Table 1)

2.3. Data collection

Each interview was conducted by two researchers (ZC and HQQ) with a Masters Degree in Nursing and training in systematic interviewing, with ZC undertaking the main interviewing tasks and HQQ audio-recording and transcribing, and ZC being a research assistant with extensive experience in qualitative research. The one-on-one semi-structured interviews allowed participants to fully express their views without being constrained by the views of others. As the interviews progressed, the interview questions were modified based on feedback from the interviewees. The sample size of the interviews was based on the criterion that no new themes would emerge during the data collection and analysis process, thus saturating the data for this study. Ultimately, each of the two researchers conducted 20 one-on-one semi-structured interviews, which lasted between 20 and 60 minutes (mean 40 SD 13.4 minutes)。

Prior to the interviews, students were briefed about the study’s purpose and a consensus was reached about the training programs of the universities. During the interviews, appropriate follow-up questions and clarification techniques were employed to encourage the students to express their true feelings. Observations were made on subjects’ facial expressions, introductions, pauses and body language, which were carefully recorded. The interviews concluded once data saturation was achieved.

According to the purpose of the study, semi-structured interviews were conducted using the phenomenological research method in qualitative research to gain insights into the real feelings of healthcare personnel in the ICU about the implementation of withdrawing LST for patients. A preliminary interview outline was developed after reviewing the literature and group discussion, and the final interview outline was determined based on the pre-interview by discussing again and consulting experts in hospice personnel, available in Table 2.

Table 2

Interview questions.
Doctors	Nurses
1. In assisting the family in making decisions about withdrawing life-sustaining treatment how are you involved in the decision-making team? What aspect of the patient's life do you focus on more during the decision-making process?	1. How involved are you in the decision-making process when assisting families in making decisions about withdrawing life-sustaining treatments? What aspects of the patient's life do you focus on more during the decision-making process?
2. What are your experiences and feelings when communicating with a patient's family about withdrawing life-sustaining treatment? What factors contribute to a patient's (impeding) family's decision to withdraw life-sustaining treatment?	2. What do you think characterizes a family member who is able to make the decision to withdraw/retain life-sustaining treatment? What factors motivate (prevent) the patient's family from making the decision to withdraw life-sustaining treatment?
3. What knowledge and skills do you feel are necessary to assist the patient's family in making a withdrawal of life-sustaining treatment? How did you learn these knowledge and skills?	3. What knowledge and skills do you feel are necessary to assist the patient's family in making decisions about withdrawing life-sustaining treatment? How did you learn these knowledge and skills?
4. When a patient's autonomy of life and quality of life are in conflict, which side do you favor? Reason?	4. How would you feel if the patient's family continued to maintain the patient's life-supporting treatment?
	5. How do you see the ethical issues of life-sustaining treatments and the conflicts in practice, and what are your suggestions or thoughts on them?

(Table 2)

2.4. Data analysis

Data were collected, organized and analyzed simultaneously. Audio recordings were converted verbatim into textual information using the voice transcription function of a third-party input method within 24 hours of each interview, and the accuracy of the transcribed content was checked. Textual content was manually coded and analyzed using NVivo 12.0/WIN 10.0 qualitative research software. Themes continued to be revised until agreement was reached by members of the research team. Content analysis was conducted using the Colaizzi seven-step analysis method¹⁶. The seven-step analysis method used in this study is shown in Table 3. Interviews were transcribed verbatim and inductively analyzed within ten working days of completion.

Table 3

Summary of the analysis steps using Colaizzi method
Step	Summary
1.Read all interviews transcripts to acquire a feeling for them.	Interviews were transcribed verbatim
	Repeated readings examined the experiences of study participants involved in decision-making about life-sustaining treatments
2.Review each interview and extract significant statements	Selecting significant statements
2.Review each interview and extract significant statements	Manual encoding
3.Extract the meaning of each important statement	Formulating meanings
3.Extract the meaning of each important statement	Compared the original quotes with the formulated meanings to achieve consistency
4.Compare the original quotes with the formulated meanings to achieve consistency	The meanings were inductively coded
a.Refer to these clusters back to the original protocols to validate themes	32 Codes were obtained and classified into 3 themes
b.Note discrepancies among the various clusters, avoiding the temptation to ignore data of themes that do not fit
5.Integrate results into an exhaustive description of the phenomenon under study	Provide a comprehensive and coherent description of the research participant's clinical practice experience based on three established themes
6.Formulate an exhaustive description of the phenomenon under study in as unequivocal a statement of identification as possible	Summarizes detailed descriptions that provide insight into the experiences of healthcare professionals from their perspectives as they engage in end-of-life decision-making and their personal preferences for end-of-life decision-making.
7.Ask participants about the findings thus far as a validation step	A summary of the findings was sent to the respondents, of which 20 study participants responded.

(Table 3)

2.5. Rigour

The transferability, reliability, and confirmability of the data enhance its credibility. To ensure the transferability of data, a thorough description of the research context of this study was conducted so that future researchers can apply the findings to their own research context. To ensure the reliability and validity of the study, the following methods were used in this study:(1) Interviewer training: to ensure that all researchers received uniform training. The researchers asked questions according to the interview outline, listened attentively, asked questions in a timely manner, reviewed and summarized, maintained an objective attitude, and did not induce, evaluate, or easily interrupt the interviewees. (2) Member checking: The results of the survey were fed back to some of the participants to confirm the accuracy of the findings and to better facilitate the external audit. All participants confirmed that the results matched their experience and that there was no new feedback in their practice since the initial interview. (3) Audit trails: Each step of the study was documented in detail to ensure transparency. (4) Consistency check: all authors were involved in all stages of analysis. The condensed text was discussed until a consensus was reached on the themes analyzed and formulated. (5) Depth and breadth: Interviews were conducted at multiple points in time and in different locations. Through the methods described above, continuous monitoring of the research process ensured that the results were more reliable and convincing.

2.6. Ethical considerations

Ethical approval was obtained from the Human Research Ethics Committees of the universities (No: 2024/443). The participants were given written and verbal information about the study, and written consent was obtained.

The study included 10 nurses (7 female and 3 male) and 10 physicians (10 male) participants, aged 26 to 38 years, with ICU experience ranging from 1 to 19 years. Three themes emerged from the study; the first theme was “healthcare professionals' perceptions of LST”, which contained two sub-themes: “professional perspective” and “humanitarian perspective”. The second theme was “Factors affecting healthcare workers' decision to withdraw LST”, with sub-themes “Personal factors of healthcare workers”, “Decision-making conflicts”, “Inadequate Preparedness” and “Ethical Dilemmas”. The third theme was “Behavioral Preferences of Healthcare Professionals in Performing LST” with sub-themes “Behavioral Preferences of Nurses” and “Behavioral Preferences of Physicians”.

3.1. Theme 1: Healthcare professionals' perceptions of LST

3.1.1. Professional perspective

LST is not only a part of the pre-established medical care plan, but also a key factor in achieving high quality development of care¹⁷. When it comes to end-of-life decision making for patients, most healthcare professionals believe that their main role is to make ethical decisions in the best interest of the patient^18,19. Thus, by going beyond the medical technology to see the individual at the bedside, and taking into account their psychological, social, environmental, and spiritual factors, to provide them with systematic quality care¹⁹. Similarly, the respondents in this study agreed that healthcare professionals should evaluate the necessity and effectiveness of LST. If the treatment is no longer effective and may even aggravate the patient's suffering, healthcare professionals may consider withdrawing the treatment to be a more appropriate option.

“Before we make the decision to withdraw life-sustaining treatment, we are first and foremost actively treating and caring for the patient in a life-saving manner, not trying to hurry up and give it up, which is a question based on an ethical dimension.” (N01)

3.1.2 Humanitarian perspective

Healthcare professionals respect the decisions of patients and their families and try to meet their needs and expectations as much as possible. In some cases, patients may wish to forgo continuing treatment and healthcare professionals support their decision. Regarding the guidance on whether or not to provide the patient's family with the LST program, the respondents were divided into two groups: those who supported LST believed that LST is a way to maintain the emotions of their loved ones, while the other group of respondents believed that LST would increase the patient's suffering.

“If the patient is in the terminal stage, there are times when further maintenance is felt to be unnecessary and will increase his suffering.” (N02)

However, interviewees also agreed that the primary purpose of withdrawing LST was to relieve patients of what they perceived to be overly burdensome treatments, not to intentionally terminate their lives.

In summary, when faced with the decision to withdraw life-sustaining treatment, healthcare professionals will take into account medical necessity, the patient's state of illness, ethical and legal considerations, as well as respect for the patient's wishes, alleviation of the patient's suffering, and family support, in order to provide the most appropriate and humanitarian care to the patient.

3.2. Theme 2: Factors Influencing Healthcare Professionals' Decision to Withdraw LSTs

3.2.1. Personal factors of health care workers

Factors affecting healthcare workers' decision to withdraw LST include healthcare workers' age, marital status, and education level. Because age can reflect the clinical experience, emotional empathy and decision-making maturity of healthcare workers to a certain extent, healthcare workers of different ages can have different emotional responses and ethical standards when facing end-of-life decision-making.

“I think younger healthcare professionals may be more familiar with the latest medical technology and end-of-life care protocols, and older healthcare professionals may be more experienced and familiar with traditional care, which may lead to different recommendations for end-of-life decision-making, I guess.” (D03)

This study reports that married healthcare professionals, due to the presence of their spouses, were able to obtain additional advice and support to some extent by sharing and discussing the patient's decision-making considerations with their spouses, which in turn helped to reduce their stress and anxiety when faced with end-of-life care decision-making, and allowed them to be more able to focus on the needs of the patient and family.

“Saving or not saving the patient would have been a shame, the time we dragged on was the time when we had the most anxiety in our hearts, I am so thankful to my husband for being able to channel my emotions, I feel like he is a strong support for me.” (N09)

Additionally, married individuals may be better able to understand the importance of family and emotional connection and thus be more patient and compassionate with patients and families.

“We also have a family and naturally we can understand the feelings of closeness that our loved ones at home bring to us, if my loved one passed away, I would have the same difficult decision as they do, so I wouldn't impose my own opinion in their end-of-life decision making, I would just give them an option only, every family has its own difficulties.” (D03)

In addition, highly educated healthcare professionals usually have more in-depth medical knowledge and technical skills, and are able to understand the patient's condition and treatment options more comprehensively, so that they can provide more professional advice and support in end-of-life care decision-making to protect the patient's rights and dignity, and at the same time continue to improve their own clinical practice through continuous reflection to provide better end-of-life care for their patients.

“I think maybe compared to nurses with bachelor's degree, I will see more things behind the problem, such as I will think about why and how to improve the problem, etc., and I think this is an advantage for me to work in the clinic.” (N07)

“I may not only combine clinical experience to make judgment on the treatment of patients, but also make the most reasonable treatment plan through data proof, etc. Of course, in this process, I will instinctively try to protect all kinds of rights and interests of patients due to experimental ethical issues.” (D06)

3.2.2. Decision-making conflicts

Foreign countries respect patient autonomy and the pre-determined medical directives signed by patients during their lifetime more than domestic ones. In China, with its family-based, harmony-oriented ethical system, social norms such as the Confucian way of life, filial piety culture and family relationships are valued more than individual rights²⁰.

“Families may keep elderly terminal patients on life support treatment out of ‘filial piety’ or because of personal interests, even if their bodies are swollen and unsightly, as long as the elderly are alive.” (N02)

"I think the enacted ‘living will’ is difficult to implement in China, even though the patient has the right to make decisions on his own, how can this right be prescribed to him? After entering the ICU, it is the family that signs the informed consent form, and which treatment the patient will receive depends entirely on the family's wishes." (N04)

Death is not seen as a personal issue, but rather a family issue, and traditional Chinese attitudes make it difficult for most families to actively decide to forgo treatment. The main factors for families to ultimately choose whether or not to withdraw LST are the significance of the patient to the family and financial conditions.

“We are most worried about this kind of 20s and 30s, 40s and 50s, a 20s and 30s are as a child, then our 40s and 50s are as a breadwinner of the family, this part of the age group, how do you let us persuade the family?” (N06)

“If you have a state reimbursement for this person like this person is okay, if this person is an older person and still paying out of pocket, shouldn't they be advised to give it up?” (N01)

3.2.3 Lack of preparedness

While a longer LST may not be beneficial for the terminally ill, families may need time to adjust to the transition from supportive to comfortable care for patients who have been hospitalized for a long period of time. Most of the healthcare professionals in this study felt that for end-stage patients who are going to decide to forgo treatment, life-sustaining treatments are often used first to give the family a period of acceptance, considering that they may not be fully prepared.

“Although it is said that we can't give a patient euthanasia, but why can't we let him go a little bit smoother, or stop causing him too much pain.” (N01)

In addition, when withdrawing life-supporting treatment, healthcare professionals often give terminal patients a certain amount of time to withdraw as well, to show their respect for terminal patients.

“Withdrawal of life-supporting treatment doesn't mean that it has to be withdrawn all the time; there are still some things that can be retained; there is a saying that you can't be a starving person, right; you have to be like intestinal nutrition or something, basic oxygen, ah, all of them have to be done for the patient to make some retention, it's just so that the patient won't be in so much pain to go.” (N02)

3.2.4 Ethical dilemma

There is a certain medical ethical conflict between the professional belief of “saving lives and helping the injured” and the removal of LST. Patients sent to the ICU urgently are not only in critical condition but also full of family's high hope, which often requires the medical staff to carry out active treatment, and if they are not resuscitated actively, they may be subjected to moral condemnation by their families and social opinion. As a result, physicians prefer to withhold LST rather than withdraw it.

"Compared to withholding life-sustaining treatment, ‘withdrawing’ is more difficult for me because I am a physician and many of the decisions I make play a leading role for the family also, and when I make the decision to withdraw, I feel like a 'killer ' and that's hard for me. I didn't want to make that decision." (D02)

Most physicians are reluctant to discuss end-of-life issues too much with families at the end of life. In the current situation of doctor-patient conflict, most physicians choose to provide detailed information about the patient's condition to the family, allowing the family to make the choice to “continue” or “drop” the patient, removing themselves from the decision of whether or not to withdraw the patient. Most doctors will choose to provide detailed information about the patient's condition to the family so that the family can choose whether to “continue” or “abandon” the LST, thus detaching themselves from the decision-making process of whether to abandon the LST for the patient and retaining their own opinions. On the one hand, physicians, as legally responsible physicians, consider the issue of accountability and fear that the family may take legal action in the future, resulting in adverse consequences, and therefore prefer to act as information providers in end-of-life decision-making.

“When the family can't make up their mind and request your opinion, it's relatively good to communicate, but if we say that the family has more things to do and may sue you in the future, we can only analyze the pros and cons at this time, and let the family take the final decision.” (D07)

"There are so many family members who may just hold on to this matter of yours, right? To put it bluntly he might just want to get some more money to go” (N06)

On the other hand, high-quality LST is a guarantee of quality of death, and the current inability of most healthcare providers to provide high-quality end-of-life care and ultimately not allowing patients to leave with peace, dignity, and minimized pain can also condemn ICU physicians for their decision to remove LST.

“In order not to take up healthcare resources, it wouldn't be practical to put them in some hospice facilities, after all, those facilities don't have all this equipment in the ICU either.” (N04)

3.3 Theme 3: Behavioral preferences of healthcare workers involved in LST decision-making

3.3.1 Behavioral preferences of nurses

3.3.1.1 Focus of the nurse's attention

Nurses in the end-of-life decision-making team usually play the roles of monitors of the patient's condition, communicators, executors of medical advice, and professional counselors for the patient's family²¹. Therefore, in the nurses' clinical work, nurses will pay more attention to the patient's feelings and the family's attitudes toward the patient in addition to their own duties in nursing, which, to a certain extent, can make healthcare professionals understand the patient's situation better, thus affecting the healthcare professionals' ability to talk to the patient's family. The tendency of treatment selection of the conversation.

“There are so many lines on the patient, and there are others that need ventilator as well as hemofilter therapy, and if the patient's prognosis isn't very good, and they're still on these facilities, these medications, I think that's really scary and painful for a person to deal with.” (N01)

“Some people are very aggressive, they ask a lot of questions, they ring the doorbell over and over again and call the nurse and ask how his temperature is, or how his blood pressure is, and they ask a lot of questions and we pay extra attention. Of course, all patients are treated equally, but maybe after he has greeted us, when we communicate with him and talk to him again, we will say more." (N04)

3.3.1.2 Nurses' experience of working with LST

Nurses mean caring, professional medical service and support to patients, helping them to recover as soon as possible and improve their quality of life. Nurses have limited involvement in end-of-life decision-making and the ultimate principle of nursing is “patient-centeredness,” so nurses may have different psychological experiences when providing end-of-life care to patients. Some nurses will focus on performing nursing tasks to ensure that the patient is properly cared for at the end of life.

“Usually the family gives up and all we nurses can do is keep him clean and give him good end-of-life care and keep a clean and clean.” (N09)

Other nurses will harbor a different mindset when dealing with a patient's end-of-life care, such as focusing on self-deliberation and work focus, or harboring good hope that the patient's recovery is possible.

“We also hope that the family has made the right decision and will look forward to that miracle and that there are good developments going on to be presented to us.”(N05)

In addition to this, there were also participants who felt that nurses should be involved in end-of-life decision-making between doctors and patients. As the first discoverer of the patient's physical and psychological changes, nurses have unique information and insights, and can be the ideal advocate for the patient, providing decision-making references for doctors and families. However, most family members believe that nurses are less specialized than doctors, so there is often a certain nurse-patient trust crisis, leading to a decrease in nurses' sense of professional value in nursing.

“Generally we now visit for half an hour, a lot of family members come with questions, he will probably have thought about the questions in advance, he may have searched for the answers on the Internet, he comes to ask you, how do you let us go face to face with them to talk to them heart to heart.”(N06)

This study found that there is also a small group of people who experience some burnout when caring for patients on life support therapy.

“There are some patients who really don't have the need for treatment anymore because all of them including some of them maybe the patient is over 100 years old, and with all these machines to maintain, with all these medications to maintain, and the dosage of the medications that go away is extraordinarily high, and then the patient ends up going away in an uncharacteristic way, and that's when it's just to say that there's a kind of exhaustion, and it really is distracting at times, as well. "(N09)

3.3.2 Behavioral preferences of physicians

3.3.2.1 Focus of the doctor's attention

When treating a terminally ill patient on life support, the physician's focus is to find a balance between keeping the patient alive and providing optimal care and support, as well as assessing the patient's family's burdens to ensure that the patient receives the most appropriate medical care during the end-of-life phase.

"Our primary concern is the patient's condition itself. Whether the condition itself is reversible or not after a professional assessment is the single most fundamental indicator of our involvement in end-of-life decision-making." (D03)

As medical workers, doctors cannot make treatment decisions by only considering the patient's condition, and the subjects of this study all considered the family's thoughts when communicating with the patient's family about the need to withdraw life-sustaining treatment.

“When the family can't decide, he may request your opinion, relatively speaking, the family is good at communicating, but if we say that the family has more things to do and may sue you in the future, we can only analyze the pros and cons at this time, and the final decision is for your family to take.” (D02)

3.3.2.2 Physicians' decision-making experiences with LST withdrawal

Physicians' work experience when withdrawing LST involves a number of aspects such as emotion, ethics, communication, and professional growth. First, on the emotional side, physicians often face a huge emotional burden when withdrawing LST. They need to deal with their sympathy for the patient, their understanding of the patient's family, and the conflict of professional ethics. For example, when communicating with patients' families about end-of-life decision-making, the research participants in this study, on the other hand, differed in their views on whether physicians should have more empathy. The positive side argued that doctors with a certain degree of empathy can better understand the patient and the family in order to be able to help the patient or the patient's family to make better decision-making recommendations. On the other hand, the opposing side argued that having too much empathy would make it more difficult for doctors to advise families on end-of-life decision-making and could even cause heavy psychological pressure on themselves.

"After a lot of contact, you will be very depressed inside. One patient leaves and you can still accept it, if two or three patients in a row go by you at the same time, you are suffering internally, there will be a very broken kind of feeling, but you can't talk to the family about this, you say I feel the same as you and so on, you can't talk about it, talk about it and only suffer this kind of pressure silently by yourself." (D09)

Second, in terms of ethics, withdrawing LST involves complex ethical decision-making, and doctors need to balance multiple factors such as the patient's autonomy, the family's wishes, and the rational use of medical resources. Therefore, physicians need to communicate clearly, honestly, and compassionately with the patient's family, explaining the true nature of the condition, the effectiveness of the treatment, and the possible consequences of withdrawing the treatment.

“There are a lot of family members who just can't accept that since I spent so much money and you guys didn't meet my ideal expectations, this is when I'm sure I'm going to come after you, so when we communicate with the family, we make sure to make all the pros and cons clear to the family, and after that, we also have the family repeat it to make sure that he understands it.” (D10)

The purpose of this study was to determine what factors are influential in the process of providing advice on withdrawing LST decision-making as a healthcare professional from the perspective of frontline ICU clinicians and nurses, and to make recommendations for their implementation in making LST decisions by understanding the different behavioral preferences of healthcare professionals in end-of-life decision-making processes.

4.1. Factors Influencing Healthcare Professionals' Decision to Withdraw LSTs

Healthcare professionals need to consider a variety of factors when deciding to administer life-sustaining treatment to ensure that the final decision is in the patient's best interest. Choi et al.²² distilled five major influences on healthcare professionals' decision to withdraw LST from a systematic review of 16 articles, namely, the tension between interdependent collaborative and hierarchical roles; the tension between views of death with dignity or treatment; the tension between family members' reflection of the patient's wishes; tension between the status of family members and the different dimensions of distress experienced by nurses and physicians during the process of withdrawing LST. The results of this study showed that the factors affecting the decision-making of healthcare professionals to implement LST include the healthcare professionals' own age, marital status, and education level as well as decision-making conflicts, the lack of preparedness of the patient's family, and the ethical dilemmas faced by the healthcare professionals, etc. The reason for this may be that different healthcare professionals have different upbringing, and they have different understandings of and perspectives on the existing things, so that in the face of the patients' conditions and the pressure of the patients' families, the Therefore, when facing the patient's condition and the pressure of the patient's family, the quality of communication between healthcare professionals and the family for end-of-life decision-making varies.

The quality of communication often influences the family's decision. Clinicians' predictions of survival rely on clinical experience in addition to the patient's pathologic and physiologic indicators, which may be influenced by factors such as personal values and religious beliefs. In terms of communication about the patient's condition, family members reported that physicians often fail to clearly communicate important information about the patient's prognosis and require family members to understand large amounts of information and make decisions in a relatively short period of time²³. This may lead to misinterpretation of prognosis by family members, a lack of trust between physicians and patients, and the creation of an atmosphere in which the physicians and patients are suspicious of each other. It is recommended that clinicians communicate the patient's medical condition and illness in accurate, colloquial terms, and that the family needs to be made fully aware of the information, and that the withdrawal of the LST should be entered into only after a consensus has been reached. In addition, by analyzing the data from 27 interviews, Janczewski²⁴ purposely emphasized that standardized work system communication tasks may improve the process of end-of-life discussions between clinicians and families. This suggests that healthcare professionals should be aware of the impact of cooperation and hierarchical role relationships between healthcare professionals on patients' end-of-life decision-making when making a withdrawal LST for a patient, and emphasize teamwork, respecting the patient's wishes, listening to family members' opinions, dealing with family relationships, and paying attention to healthcare professionals' emotions. Meanwhile, a standardized communication workflow can effectively safeguard the dignity and rights of patients and converge the priorities or treatment goals of healthcare workers-families-patients, and relevant communication models for medical decision-making for terminally ill patients can be actively explored in the future.

4.2. Implementation Recommendations for Healthcare Professional Participation in the Withdrawal of LST Decisions by Proxy Decision Makers

Influenced by traditional cultural and emotional factors, surrogate decision makers tend to have a fear and avoidance of the topic of death, refusing to accept the reality of the death of their loved ones, and often holding the obsession of doing everything in their power to save their lives, thus affecting the quality of survival or the patient's autonomy of life. In addition, surrogate decision makers often weigh the cost-effectiveness of end-of-life decision-making choices in terms of financial ability and patient prognosis, rather than on the basis of understanding the patient's condition and respecting the patient's wishes. Healthcare workers are the direct contacts in the patient's treatment process and have the whole process of the patient's condition changes, and are most likely to obtain effective information from the patient compared to the family members. Therefore, when communicating with surrogate decision makers about end-of-life decision making, healthcare workers should ensure that the decision-making process is scientific, ethical, and humanized, and that teamwork and trust between healthcare workers and patients are emphasized in order to improve the quality of decision making, and to provide patients and their families with the greatest degree of support and care.

4.2.1. Emphasize teamwork in healthcare

When faced with the decision of whether life-sustaining treatment needs to be withdrawn, consensus and consistency in the healthcare team will help to minimize the suffering of the patient and family, as well as to ensure objectivity and reasonableness in decision-making, reduce medical disputes, and improve the quality of care. Due to the limitations of nurses and physicians by the hospital and their scope of work, there are some power differences between the two in the decision-making team. The results of this study show that some groups of nurses believe that nurses should have some say in the decision-making team to protect the patients' own interests. However, in clinical practice, physicians' perceptions of nurse involvement and treatment ineffectiveness influence the value of the nurse's voice during withdrawal of life-sustaining treatment. Similarly, Ge et al. ²⁵ through a multicenter mixed study of physicians also concluded that nurses' opinions in end-of-life decision-making teams are often undervalued or not always valued. This leads to a rise in burnout among nurses who are already experiencing ethical distress and do not have a voice in the end-of-life decision-making team, which in turn leads to a further decline in their sense of professional worth and professional autonomy. Berger-Höger et al. ²⁶ encourage early deliberation among healthcare workers about the need for a patient to withdraw the LST to be organized in the form of a family meeting. Flannery et al. ²¹ also argued that healthcare workers who are implementing recommendations on end-of-life decision-making should be divided in teams. Since nurses are the first contact with the patient and can keep abreast of the patient's needs and psychological experience, they suggest that physicians, while providing the surrogate decision maker with comprehensive information about the patient's disease progression, treatment outcomes, potential risks, and other viable treatment options and accurately assessing the patient's condition and prognosis should pay attention to the patient's opinions and feelings represented by the nurse to help the surrogate decision maker to better understand the situation and make the views and feelings of the patient represented by the nurse should be emphasized to help the surrogate decision maker better understand the situation and make the best medical decisions. Additionally, patients who are hospitalized in the ICU for a shorter period of time will have a shorter time to exit the LST due to the rapid progression of their condition. Families may have more difficulty accepting sudden death. Families may have more severe post-traumatic stress syndrome. Therefore, domestic healthcare professionals should actively learn from foreign experiences of teamwork regarding the implementation of end-of-life decision-making, strengthen their own knowledge of patients' end-of-life decision-making, emphasize teamwork, deeply understand the family's point of view, and provide more comprehensive support and auxiliary opinions for surrogate decision-makers, so as to help patients and their families to prepare for the upcoming death.

4.2.2. Strengthening the level of trust between doctors and patients

A strong trusting relationship between healthcare professionals and patients/families is important for the implementation of end-of-life decision-making. Most of the study participants reported that family members of patients with sudden serious illnesses were prone to emotional outbursts and questioning of healthcare personnel when receiving news of the patient's terminal condition. The reason for this may be due to the special regulations that do not allow casual visits in ICU wards, the most direct source of information about the patient's condition for the patient's family members to receive is the language of the healthcare personnel, and they cannot dynamically see the development of the patient's condition, so they are prone to distrust the healthcare personnel and are unable to accept the fact of end-of-life quickly. Au et al. ²⁷ suggest that healthcare personnel should pay attention to the communication skills when communicating with the patient's family members to narrow the communication gap between the patient and the healthcare personnel. into the communication gap between doctors and patients, by inviting the patient's family to participate in the department's room work, the use of family members every visit to explain the patient's condition to the family in detail to increase the acceptance of the patient's family on the decision-making degree, to enhance the sense of trust between doctors and patients, and rationally view the topic of death. At the same time, during the communication process, attention should also be paid to the value preferences between the patient's family and the patient, explaining in detail to the surrogate decision maker the purpose, process, and possible outcomes of life-sustaining treatment, including the patient's prognosis and possible quality of life²⁸. In addition, the surrogate decision maker should also be informed of all feasible medical choices, including continuation of treatment and palliative care, to enable the surrogate decision maker to make better trade-offs. In addition to this, the results of this study showed that not only the patient's family members would have doubts about the nurse's professionalism, but also the physicians would be more likely to adopt the physician's suggestions and opinions related to the patient's end-of-life decision-making, ignoring the psychological experiences and perceptions of the patient cared for by the nurse. This may be related to factors such as differences in professional perceptions, authority and power relationships, lack of communication and collaboration mechanisms, and role perceptions and social identities. Guerra et al. ²⁹ suggest that nurses' professional knowledge, emotional support, and teamwork skills can provide invaluable assistance to the patient and family, and can ensure that the patient and the patient's family receive the best possible care during the end-of-life phase. This suggests that physicians should actively listen to and respect nurses and form a close partnership with nurses to provide comprehensive end-of-life care. At the same time, nurses should also increase their involvement in the end-of-life decision-making team to ensure that patients have access to the best medical options.

Decision-making about whether a patient needs to withdraw LST can be influenced in different forms depending on the personal characteristics of healthcare professionals and the preferences of patients or families. Therefore, in the future, interprofessional education and cooperation between the two disciplines should be emphasized to explore a professional cooperation model suitable for our country and incorporate the patient's or family's considerations into the decision-making process, give decision support to the patient or family, and establish a trusting relationship between the healthcare provider and the patient to improve the quality of decision-making in the future. In addition, when choosing to withdraw LST, healthcare professionals need to face life and death decisions and the emotions of family members while safeguarding the dignity and rights of patients, and future research can also continue to explore effective ways for healthcare professionals to reasonably relieve psychological stress.

There are some limitations of this study. First, this study utilized a convenience sampling method. The researchers selected the sample based on their own experience and judgment of the quality of the data collected. Considering the voluntary nature of the survey, the researcher's selection was highly subjective and selection bias was inevitable. Second, the sample size selected for this study was limited, and although it can reflect the views of healthcare professionals within Chinese ICUs to a certain extent, it still cannot represent the decision-making dilemma of all healthcare professionals. Third, the findings of this study were derived from clinical situations within ICUs in the Chinese setting, and different cultural and policy environments may lead to different experiences and perspectives; nevertheless, this study may provide valuable information for studies related to the withdrawal of LST.

Credit authorship contribution statement

Chao Zhang: conceptualisation, methodology, investigation, writing original draft and making critical revisions to the manuscript for important intellectual content.

Cuiping Xu: conceptualisation, methodology, investigation and supervision.

Yajing Wu: data analysis and review.

Qianqian He: data analysis.

Conflicts of interest

No conflict of interest has been declared by the authors.

Data available statement

Due to the nature of this research, participants of this study did not agree for their data to be shared publicly, so supporting data is not available.

Funding

This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.

Author Contribution

Chao Zhang: conceptualisation, methodology, investigation, writing original draft and making critical revisions to the manuscript for important intellectual content.Cuiping Xu: conceptualisation, methodology, investigation and supervision.Yajing Wu: data analysis and review.Qianqian He: data analysis.

Acknowledgement

The authors wish to thank all the physicians and nurses in the intensive care unit who participated in this study, as well as the head nurse of the respiratory intensive care unit of the First Affiliated Hospital of Shandong First Medical University for their guidance and care.

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No competing interests reported.

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Healthcare workers' experiences of participating in life-sustaining treatment decision-making in a Chinese intensive care unit：A qualitative study

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Abstract

1. Introduction

2. Methods

2.1. Design

2.2. Participants

2.3. Data collection

2.4. Data analysis

2.5. Rigour

2.6. Ethical considerations

3. Findings

3.1. Theme 1: Healthcare professionals' perceptions of LST

3.1.1. Professional perspective

3.1.2 Humanitarian perspective

3.2. Theme 2: Factors Influencing Healthcare Professionals' Decision to Withdraw LSTs

3.2.1. Personal factors of health care workers

3.2.2. Decision-making conflicts

3.2.3 Lack of preparedness

3.2.4 Ethical dilemma

3.3 Theme 3: Behavioral preferences of healthcare workers involved in LST decision-making

3.3.1 Behavioral preferences of nurses

3.3.1.1 Focus of the nurse's attention

3.3.1.2 Nurses' experience of working with LST

3.3.2 Behavioral preferences of physicians

3.3.2.1 Focus of the doctor's attention

3.3.2.2 Physicians' decision-making experiences with LST withdrawal

4. Discussion

4.1. Factors Influencing Healthcare Professionals' Decision to Withdraw LSTs

4.2.1. Emphasize teamwork in healthcare

4.2.2. Strengthening the level of trust between doctors and patients

5. Conclusions

6. Limitations

Declarations

Credit authorship contribution statement

Conflicts of interest

Data available statement

Funding

Author Contribution

Acknowledgement

References

Additional Declarations

Supplementary Files

Status:

Version 1