Participant characteristics

A total of 22 participants took part in the in-depth interviews about the SDM process. The participants included healthcare professionals, patients, and caregivers. The healthcare professionals consisted of doctors and nurses. The doctors comprised senior and junior doctors specializing in hemato-oncology and pulmonology. Patients included those facing decisions on LST due to terminal illnesses. Caregivers were the primary support for these patients. This diverse group offered comprehensive insights into SDM processes for LSTs. Researchers conducted individual interviews with each participant using a set of predetermined questions. The characteristics of the participants are outlined in Table 2. 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).

Table 2 Characteristics of Interview ParticipantsTheme extraction

Themes were identified for the three participant groups (Table 3). The actual discussions with patients, caregivers, and healthcare professionals corresponding to each extracted theme are documented in Table 4.

Table 3 Themes of the decision-making process related to end-of-life careTable 4 The actual dialogues that correspond to each extracted themeHealthcare professionals’ perspective Profound empathy for patients and regrets over unnecessary medical procedures

Healthcare professionals believe that the final moments of patients can be inhumane and filled with suffering based on their previous experiences. As a result, when the condition of a patient deteriorates, the healthcare provider 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.

Concerns and hesitations about initiating discussions on LST withholding

In discussions on withholding LST, healthcare professionals noted that the attending physician usually only started the conversation with a patient or caregivers if the patient’s condition had deteriorated or the patient-initiated engagement. Even during discussions, the attending physician often preferred to talk to the caregivers first as they believed the patient could find the conversation distressing.

Start talking about LST carefully when a patient has the potential to deteriorate

The attending physician often expedited decisions on withholding LST when they feared the patient’s condition had worsened. When 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 the earliest cancer stage. These discussions happened gradually, according to changes in the patient’s condition, to ensure that decisions on withholding LST were made progressively.

Swift progression after family members established a consensus

Gathering opinions from family members was identified as the most time-consuming activity. Therefore, when a consensus was reached, subsequent steps, such as completing forms and planning, could proceed swiftly.

Family members’ perspective A strong belief that a close bond leads to mutual understanding

Family members believed their close bond allowed them to understand the patient’s intentions. Family members discussed death and their thoughts casually when someone they knew had passed away. Moreover, family members who had lived together for a long time felt that they could infer the meaning behind the words and actions of the patient.

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. Families trusted doctors who showed their human side, understood their feelings, and engaged in meaningful conversations.

Belief in medical professional judgments on LST decisions

Caregivers acknowledged the challenges of obtaining medical information online due to complex terminology and nuances in cancer types. Therefore, families seeking precise guidance turned to healthcare professionals for comprehensive advice on patient-specific treatments, which involved understanding prognoses and the remaining survival timeframe. Thus, 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.

Patients’ perspective A belief in the correct chosen action for their loved ones

The patients believed that withholding LST may be appropriate as caregivers could already be under financial, psychological, and physiological stresses. Consequently, most patients did not wish to place this additional burden on family members.

A feeling of being gradually pushed aside in life

The phrase “a feeling of being terribly pushed aside in life” might sound awkward, but it accurately reflects the patient’s words during the interview. This phrase can be further interpreted as a “feeling of alienation” or an “emotion of being distanced from others and life.” This feeling is similar to the experience described in a study that explored the end-of-life narrative of older people, where patients noted that their well-being was acknowledged even as they lost their sense of self and connection to the world. When the patients were interviewed in this study, they expressed having thoughts that they could fight and conquer cancer. However, when they discovered that no more treatment options remained 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.

A fear of the moment when death approaches

Despite deciding not to undergo LST, when patients tried to complete the related paperwork, they expressed feeling 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.

Emergence of the SDM process for LST

In the SDM process for deciding LST, we applied the 6C framework (Table 5). As outlined previously by Strauss [10], this study used a thematic analysis to categorize interview data into higher-level concepts (Fig. 1). This framework was referenced to enhance our understanding and intuition regarding human actions and interactions, and we ensured inter-coder reliability through a triangulation process involving two to three researchers.

Fig. 1

The SDM process for LST based on interviews using “6C”

Table 5 The actual dialogues correspond to the “6C” frameworkCausal condition: an advanced-stage cancer diagnosis

Causal conditions refer to events that trigger or lead to the occurrence or development of a phenomenon. In the process of 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.

Context: opting out of life-sustaining treatment (LST) amidst the conflict between perceptions of futility and the instinct for survival

A contextual phenomenon is 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 employ their personal beliefs and past experiences to consider the worthlessness of LST. Additionally, this process triggers various emotions, including financial worries from LST, caregiver distress, and frustration from physical impairments. Ultimately, the patients decide to withhold LST.

Central phenomenon: patients and caregivers endeavoring to participate in SDM

Patients and caregivers often try to engage in careful discussions on LST since 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, as the health of the patient deteriorates or the medical professionals intervene, these groups begin to inquire about each other’s preferences and how the patient wishes to confront death. If their preferences align, an advanced care plan is created, and hospice care is considered. If preferences do not align, it leads to significant challenges among the patients, caregivers, and medical professionals. Nevertheless, a dialogue can be held regarding each party’s preferences and approach to navigating the end of life.

Coordination strategy: conversations overshadowed by reluctance and guilt

While 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.

Contingent condition: involvement and guidance of medical professionals

Contingent 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, the healthcare professionals gradually explain the futility of LST to the patients and caregivers. Here, healthcare professionals would draw on their experience of witnessing end-stage cancer patients undergo unnecessary suffering from LST. Ultimately, the aim is to facilitate a deeper understanding for patients and caregivers regarding the importance of a peaceful and dignified dying process.

Consequence: balancing perspectives to make the right decision

A consensus is reached after multiple conversations about each other’s thoughts and values. 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. Ultimately, the patients and caregivers mutually decide to discontinue LST, in alignment with their shared objective of prioritizing comfort or minimal pain during the remaining time.