Phenomenological research methodologies were employed to conduct semi-structured, in-depth interviews with 15 surrogate decision-makers of neurosurgical critically ill patients. The interview data underwent analysis and distillation utilizing the Colaizzi 7-step methodology. It was found that surrogate decision-makers for neurosurgical critically ill patients encounter decision-making conflicts, which are categorized into three principal themes. These themes and sub-themes categorized from the data are presented in Fig. 1.
3.1 Multidimensional Content of Decision-Making
Sub-theme: Conflicts between the quality of life and the length of life
Neurosurgical patients in critical condition often rely heavily on advanced medical devices to sustain vital signs, significantly compromising their quality of life. Consequently, surrogate decision-makers face an agonizing choice between prioritizing the quality of survival and the duration of life. Influenced by the doctrine that prioritizes the sanctity of life, some of these surrogates express a preference to prioritize the patient's survival above all else in the medical decision-making process.
I think we have to keep him alive first. We can't talk about the future until he's alive.(N2)
However, as the value of life remains paramount, considerations of dignity and quality of existence become equally significant for surrogate decision-makers.
I'm particularly torn and particularly agonized over the point, and now it's whether to continue the treatment or not, I'd love to make him comfortable and quality of life is important.(N1)
The bottom line for me is whether or not he knows he's a human being living in the world, and if he doesn't, I don't think there's much quality or dignity in it at all.(N9)
Sub-theme: Patient preference versus decision maker's preference
Respecting patients' values and treatment preferences is a basic principle in medical decision-making" [9]. However, patients with neurological illnesses often struggle to express their treatment desires due to communication impairments, and preparing advance directives while healthy is uncommon among the general public. This lack of planning leaves family members uncertain about patients' treatment preferences. Additionally, several interviewees noted that despite knowing the patients' end-of-life wishes, cultural values emphasizing family duty and loyalty among siblings presented significant challenges. These cultural expectations made it very hard to consider stopping treatment, causing substantial internal conflict and distress.
I, as a daughter, out of my own feelings, I just forcibly had to keep him alive.(N2)
He himself did say that he wanted to live a higher quality of existence, but after all, his child is still too young, I can't leave him untreated, I can't leave my child so young without a father.(N11)
Sub-theme: Treatment expectations versus real-world conditions
Healthcare economics and technological limitations greatly restrict medical decision-making, impeding patients' access to effective treatments and favorable prognoses. This reality stands in stark contrast to decision-makers' aspirations for successful outcomes. The exorbitant cost of care for neurocritical illnesses and the uncertainty surrounding treatment outcomes pose significant challenges. In the real-world medical context, families often face compelling circumstances that force them to forego treatment due to financial strain, placing immense conflict and pressure on decision-makers [10].
My brother has spent more than 400,000 yuan, which is really unaffordable for our ordinary family, but if we don't give him the treatment, it is to deprive him of his hope of recovering, and our family doesn't want to do that!.(N6)
Moreover, despite rapid advancements in medical technology, many diseases still lack effective treatment options. This limitation in medical capabilities disappoints families who hold optimistic expectations for their loved one's prognosis.
I just feel so helpless right now, there are no good treatment options for glioma at all right now.(N1)
I started out running for an operation, thinking that I could always live for three to five years after the operation, but I didn't expect the director to say that there was no way to operate, and that it would only be six months at most, so I really don't want to do it.(N13)
3.2 Complex Causes of Decision-Making Conflict
Sub-theme: The complexity of making decisions in critical care
Neurocritical conditions are notably complex, often involving multiple body systems and progressing rapidly, requiring frequent adjustments to treatment plans. This situation requires surrogate decision-makers to be continuously engaged in decision-making processes. Moreover, these medical decisions are typically made under considerable time pressure and have immediate consequences for the patient's care and outcomes. As a result, surrogates frequently grapple with the complexities involved, leading to feelings of decision conflict, decision fatigue, and regret regarding the choices made.
I'm also very confused, the doctor said that once the tube in his mouth is pulled out, he will suffer from heart failure, but if he doesn't pull out the tube, his lungs will be deteriorating, so it's best to have a pneumonectomy. But will this pneumonectomy have a lot of sequelae or infections or something.(N8)
The doctor told me at the time that brain hemorrhage was a rush for time, analyzed the risks of the two options for me, and asked me to make a decision right away, and I was really in a blank mind.(N4)
Sub-theme: limited access to information
The primary cause of decision-making conflicts is the lack of information. Approximately two-thirds of the interviewees reported relying solely on one channel for obtaining information, with doctor-patient communication being the primary or even the sole source of information for their decision-making process.
I can't participate in decision-making either, the doctor is the professional, I listen to the doctor, and I don't check anything else.(N12)
However, there are several issues within doctor-patient communication itself that contribute to the inadequacy of decision-making information. These include limited opportunities for interaction between doctors and patients, brief communication durations, and ineffective exchanges between them.
This side of the monitoring room I think it is very difficult to communicate with the doctor, it is very difficult to communicate with the doctor, I just have to wait there, and there is no way to get to the doctor at all, it's especially passive.(N1)
I arrive here every morning at 6:00 am or so to wait for the doctor, but the real communication is only a few minutes, no way.(N10)
Furthermore, some interviewees mentioned that their high levels of tension and stress during doctor-patient communication impaired their ability to comprehend and assimilate information effectively.
When I go into the hospital I'm shaking, and so much of what the doctor says doesn't seem to go into my head.(N3)
Additionally, the limited visitation policy in the ICU impedes decision-makers from assessing and gathering information about the patient's condition, exacerbating their feelings of uncertainty and loss of control in the decision-making process.
Being on the outside not knowing what's going on on the inside is really anxiety-provoking, it's really like I don't know anything, and I feel like that has an impact on the choices I make as well.(N5)
Sub-theme:Cultural and Public Opinion Pressures
Traditional cultural norms and societal opinions also exert significant pressure on medical decision-making, placing decision-makers in a difficult position.
As a child, I can't get over it in my heart, I can't say I won't save her.(N5)
Moreover, other interviewees expressed that even when they were aware of the patient's slim chances of survival, they struggled to discontinue treatment due to obligations of filial piety and fear of societal condemnation. This decision-making process inflicts considerable emotional distress on the decision-maker, especially when faced with end-of-life choices, often leading to intense levels of decision-making conflict.
3.3 Multifaceted Consequences of Decision-Making Conflict
Sub-theme: Emotional Dilemmas of Decision Makers
Around 80% of participants reported experiencing significant negative emotions throughout the decision-making process. These emotions varied from concerns about the patient's health condition to fatigue from repetitive decision-making, apprehension about the repercussions of inadequate decisions, a sense of powerlessness stemming from one-sided communication between patient and doctor, and anxiety triggered by restricted visitation policies in the ICU.
I was constantly plagued by worries about the growth of the tumor and the looming threat of its recurrence.(N1)
The requirement for so many procedures—ranging from PICC line insertion to intubation and surgery—left me feeling numb. Faced with the doctors' recommendations, I complied, though unsure of their correctness.(N10)
The lengthy waits each morning, coupled with the brief windows for communication, were understandable yet inevitably led to feelings of resentment.(N6)
The anxiety of waiting outside was overwhelming. The prospect of having even a minute or two each day for face-to-face communication would greatly alleviate the distress felt by family members.(N5)
Sub-theme: Forced Delays in Patient Treatment
The patient's treatment process may encounter delays when surrogate decision-makers struggle to choose among various treatment options, leading to variable outcomes.
The surgeon recommended a pneumonectomy, but I questioned the advisability of undergoing a tracheostomy due to the perceived risks. Upon conducting my own research, I found numerous potential complications and a significant risk of infection, leading to my hesitation in consenting to the procedure.(N8)
After refusing intubation, the doctor warned, 'The condition is deteriorating; failure to intubate could lead to asphyxiation,' a concern I believe arises from anecdotal evidence suggesting that once the tube is inserted, it becomes challenging to remove.(N15)
Sub-theme: Risk to Patient-Physician Trust
Doctor-patient communication serves as the foundation of medical decision-making. When this communication is inefficient, it fails to meet decision-makers' informational needs, resulting in conflicts and a notable decline in trust between doctors and patients. This erosion of trust can create a harmful cycle, negatively impacting future treatment interactions. Some participants voiced frustration and developed resistance towards physicians due to what they viewed as inadequate communication attitudes and styles when addressing their questions.
One expects that physicians would engage in discussions respectfully, devoid of personal biases that could make patients uncomfortable.(N15)
My dissatisfaction stems from a lack of empathy; you must endeavor to understand our perspective. If I seek clarification, it is imperative that you respond with patience and clarity. Without this, how am I to make informed decisions or place my trust in you?(N13)