1) Participant characteristics
A total of 21 participants took part in in-depth interviews about the actual process. Researchers conducted individual interviews with each participant, and these interviews followed a set of predetermined questions. The characteristics of the participants are outlined in Table 1 (Supplementary Appendix). The interviews were conducted with healthcare professionals, doctors (n=4), and nurses (n=4), as well as patients (n=5) and their caregivers (n=7).
2) Theme extraction
Themes were identified for the three participant groups (Table 2). The actual discussions with patients, caregivers, and healthcare professionals corresponding to each extracted theme are documented in the Table 3.
1. Healthcare professionals’ perspective
1-1. Profound empathy for patients and regret over unnecessary medical procedures
Healthcare professionals believed that the final moments of patients can be inhumane and filled with suffering based on their previous experiences. As a result, when a patient's condition had deteriorated, they pondered whether aggressive LST, including admission to the intensive care unit (ICU), would be beneficial enough to justify the potential suffering the patient might endure.
1-2. Concerns and hesitations about initiating discussions on LST withholding
In discussions on LST withholding, healthcare professionals noted that the attending physician usually did not start the conversation with a patient or caregivers unless the patient's condition had deteriorated or they wanted to engage in the conversation first. Even when discussions occurred, the attending physician often preferred to talk to the caregivers first as they believed that the conversation can be distressing to the patient.
1-3. Start talking about LST carefully when a patient has the potential to deteriorate
The attending physician often expedited decisions on LST withholding when they feared that a patient's condition had worsened. In situations where the patient's condition suddenly deteriorated without prior planning or discussion, it could be challenging for a different physician (on-call) to decide on the treatment approach. Therefore, the attending physician initiated these discussions with the patient or family at an earlier stage of cancer. These discussions happened gradually according to changes in the patient's condition to ensure that decisions on LST withholding were made progressively.
1-4. Swift progression once consensus among family members is established
Gathering opinions from family members was identified as the most time-consuming activity. Therefore, when a consensus could be reached among them, subsequent steps such as completing forms and planning could proceed swiftly.
2. Family members' perspective
2-1. A strong belief that a close bond leads to mutual understanding
Family members believed that their close bond allowed them to understand the patient's intentions well. They discussed death and their thoughts casually when someone they knew had passed away. Moreover, for family members who had lived together for a long time, they felt that they could infer the meaning behind the words and actions of the patient.
2-2. Trust in healthcare professionals who genuinely care about patients
Family members expressed great satisfaction when they encountered healthcare professionals with whom they could communicate well and establish rapport. They had absolute trust in doctors who showed their human side, understood their feelings, and engaged in meaningful conversations.
2-3. Believe in medical professional judgments about the process of LST decisions
Caregivers acknowledged the challenges of obtaining medical information online due to complex terminology and nuances in cancer types. Seeking precise guidance, they turned to healthcare professionals for a comprehensive advice on patient-specific treatments, which involved understanding prognoses and the remaining survival timeframe. A patient-centric assessment and clear explanations could foster a shared understanding. This process could facilitate end-of-life decisions, especially in cases where viable treatment options are exhausted.
3. Patients’ perspective
3-1. A belief in the rightness of the chosen action for their loved ones
The patients believed that a decision to withhold LST may be appropriate as their caregivers could already be burdened by financial difficulties and psychological and physiological stress. Consequently, most patients did not wish to place this additional burden on the ones they love.
3-2. A feeling of being gradually pushed aside in life
Some patients thought that they could fight and conquer cancer. However, when they discovered that there were no more treatment options and that it was time to decide whether to withhold LST, they became overwhelmed and experienced the sensation of someone pushing them out of life and into death.
3-3. A fear of the moment when death approaches
Despite deciding not to undergo LST, when they actually tried to complete the related paperwork, they felt like they were entering a deep pit from which they could never emerge, and there was still a fear of the moment of facing death. Therefore, they expressed hope for a natural death without being aware of the precise moment, wanting to peacefully pass away in their sleep without experiencing pain.
3) Emergence of the SDM process for LST
To comprehensively understand the themes derived from the participant groups, we extracted themes of the SDM process for LST based on the interviews using the “6C” framework (Table 4). This process is visualized in a diagram (Figure 1).
1. Causal condition: a diagnosis of advanced-stage cancer
Causal conditions refer to events that trigger or lead to the occurrence or development of a phenomenon. In the process of making end-of-life medical decisions, the initial condition that precedes everything is the clinical and laboratory diagnosis indicating a state where further cure is medically impossible with modern medicine. Subsequently, various treatment options are explored, often involving repeated failures and disappointments, leading to a realization that a return to a healthy state is no longer attainable.
2. Contextual condition: Opting out of Life-Sustaining Treatment (LST) amidst the conflict between perceptions of futility and the instinct for survival
A contextual phenomenon refers to a specific set of attributes that define a situation. During this phase, patients grapple with a balance between the perceived futility of LST and their innate desire to live. Patients consider the worthlessness of LST through their personal beliefs and past experiences. Additionally, this process triggers various emotions, including financial worries from LST, caregiver distress, and frustration from physical impairments. Ultimately, they decide to withhold LST.
3. Central phenomena: Patients and caregivers endeavoring to participate in SDM
Patients and caregivers often try to engage in careful discussions on LST. They believe that directly asking each other about death can cause emotional distress. Instead of openly stating their intentions, they subtly explore each other's thoughts, describing a situation as if it were someone else's business and gradually working to understand each other.
However, with health deterioration or the intervention of medical professionals, they begin to inquire about each other's preferences and how they wish to confront death. If their preferences align, they create an advance care plan and consider hospice care. If preferences do not align, it leads to significant challenges among the patients, caregivers, and medical professionals. Nevertheless, with patient health deterioration or medical professional intervention, a dialogue regarding each party's preferences and their approach to navigating the end of life can be held.
4. Interaction strategy: Conversations overshadowed by reluctance and guilt
During the process of understanding each other's intentions, patients and caregivers may experience internal and external conflicts. Deciding to discontinue LST is regarded as an act of "giving up on life", which can induce feelings of guilt and hesitation. This fear and sense of burden can cause delays in the decision-making process, especially when patients are unable to express their wishes due to conditions such as coma, cognitive impairment, or mental health issues.
5. Intervening condition: involvement and guidance of medical professionals
Intervening conditions involve regulating or managing a phenomenon or problem. Healthcare professionals often grapple with feelings of despair and helplessness when they come to terms with the absence of further treatment options for patients. In such a situation, healthcare professionals strive to provide a comprehensive overview of the remaining treatment options, highlighting their drawbacks and benefits. Following internal conflicts and exploration of alternatives, they gradually explain the futility of LST to both patients and their caregivers. They would draw on their experience of witnessing end-stage cancer patients undergo unnecessary suffering from LST. Ultimately, they aim to facilitate a deeper understanding for patients and caregivers regarding the importance of a peaceful and dignified dying process.
6. Consequence: balancing perspectives to make the right decision
Following multiple conversations about each other's thoughts and values, a consensus is reached. As the illness progresses, the intensified pain of patients leads to more frequent thoughts of wanting to end their suffering. However, these contemplations increase their guilt in leaving behind young children or dependents, who often require care. Amidst these internal conflicts, patients gradually solidify their commitment to discontinuing LST, while caregivers acknowledge that they have done their best. Both the patients and caregivers ultimately arrive at a mutual decision to discontinue LST, in alignment with their shared objective of prioritizing comfort or minimal pain during the remaining time.