3.1. Conceptualizations of palliative care: an “end of the line” alternative, versus an “important part of comprehensive treatment”
While doctors generally agreed palliative care could help relieve suffering for advanced cancer patients, two contrasting frameworks for its purpose and timing emerged across interviews. Most doctors conceptualized palliative care as a last resort, equating it with end-of-life care and considering it only when they could not provide active treatment. Only a few doctors believed palliative care could be complementary and integrated with active treatment.
Doctors who saw palliative care as a last resort described it using phrases such as “there’s no other way” (Dr. L), “really at the end of the line,” (Dr. R), and “for older patients or those with poor basic conditions” (Dr. T). They said they were “inclined toward active treatment” (Dr. P), and viewed palliative care as conflicting with goals of active treatment: “If the patient can still go to chemotherapy, then palliative care is given too early, as if he will not necessarily benefit (from active treatment)” (Dr. M.). They described turning to palliative care for two reasons: if active treatment was too expensive, or if the patient had an especially poor prognosis (Dr. M). They also did not believe palliative care had any potential to prolong survival:
“[The palliative care patient] is a patient with advanced cancer whose survival cannot be prolonged by our usual anti-tumor methods. In this case, we may try to relieve the pain with some symptomatic support treatment instead of aggressive treatment […] because there is no way to prolong his life in palliative care.” —Dr. Q
By contrast, a minority of doctors viewed palliative care as an “important part of comprehensive treatment” (Dr. E), and considered the goals of palliative and active treatment to be “mutually transformative” (Dr. A). Unlike doctors in the first group, these doctors acknowledged that palliative care could help lengthen survival in some cases: “Palliative care is to alleviate the suffering of the patient. If it can prolong his life, even better. If it can't be prolonged, it's still a relief to the patient” (Dr. C).
One doctor in the second group initiated palliative care for the same main reasons as doctors in the first group: when active treatment was too expensive, or the patient’s prognosis especially poor (Dr. U). However, she conceptualized palliative care as integrated with active treatment: “Palliative care is giving patients palliative treatment in addition to cancer treatment—to not only control physical pain and treatment side effects, but also support psychological problems and improve quality of life” (Dr. U). Other doctors in the second group placed less emphasis on prognosis, stating palliative care could begin “from the moment of diagnosis” (Dr. B) or “from an early stage” (Dr. P).
Despite their contrasting views, at least one doctor in each group desired training on the ideal timing of palliative care for advanced cancer patients (Drs. M, U). Overall, only 5 of 24 doctors stated that they had received any training in palliative care.
3.2. Approaches to communication: How concealing an advanced cancer diagnosis leads to “two sets of dialogue” with patients and families about palliative care
Although conceptualizations of palliative care differed among doctors, approaches to communication were remarkably uniform. From the beginning, doctors followed the preferences of most families to conceal the patient’s diagnosis, at least in pretense: “If the family asks me to conceal [the diagnosis] from the patient, I will withhold it. But because by this time, in fact, most patients are symptomatic, I think it would be very difficult in practice to completely conceal it” (Dr. E). Preserving this pretense over the course of treatment required doctors to engage in “two sets of dialogue” about treatment options — one with the patient, and one with the family:
“We actually have two sets of dialogue. When you talk to a patient, there are some things that you might not mention. […] I will talk less about the bad, and I will certainly try to give the patient as much hope as possible. […] But when talking to the family, due to the way the medical environment is, you can't give the family too much hope. Because if you let the family hold expectations too high, if you do not meet them in the end, it will cause medical disputes. So we talk more about bad things with the family.” —Dr. C
When it came time to discuss palliative care, these “two sets of dialogue” emerged across interviews as a pattern of opposites. Doctors shared recommendations about palliative care “first” with families (Drs. A, E, H, M, P), and more “slowly” with patients (U, X). They talked with patients “mildly” (Dr. D),“optimistically” (Dr. E), and “euphemistically” (Dr. K); but with families in a way that was “straightforward and direct,” (Dr. K), and “realistic” (Drs. E, M).
In addition to wanting to protect patients from despair (Drs. D, E, I, K, M, U), doctors worried if they did not frame information optimistically enough for patients, families who wanted to protect patients would raise disputes (Drs. G, M). They also worried that if they did not frame information pessimistically enough for families, families could be shocked if the patient declined, and accuse the doctor of malpractice (Drs. C, J).
At early stages of communication, some doctors described feeling ethical tension about compromising the patient’s “right to know” about their condition (Drs. I, U). As separate dialogues continued, they expressed concern about the patient’s “right to decide” between treatments, including palliative care (Drs. N, U). One doctor described how compromising the right to know evolved into compromising the right to decide: “We have this problem in China: It seems that the patient's family, not the patient, decides his treatment, life, and death. The patient is not fully informed, and then perhaps he himself has little discretion in this matter” (Dr. G).
Several doctors desired training on ethics of palliative care communication (Drs. A, O, R, S, U), both for patients’ benefit and to protect themselves from disputes: “Particularly when opinions differ between doctors and families, it may be important for us to conduct ethical training on how to make treatment decisions to ensure the interests of patients without causing too much trouble to ourselves” (Dr. H).
3.3. Self-perceived roles in palliative care decision-making: Objective advisors, versus experts with influence
As doctors held separate conversations with patients and families about treatment options, they tended to view themselves according to one of two decision-making roles. While some doctors strove to be objective advisors, others saw themselves as experts with influence on decisions.
Doctors who strived to maintain an objective role presented “advice” (Drs. K, W) or “pros and cons” (Dr. P) about active and palliative treatment options to families, and sometimes to patients. They then drew boundaries for their involvement, stating: “I don't have any subjective intentions to guide him (the patient),” (Dr. P) or, “It is impossible for us to influence the patient's thoughts and ideas” (Dr. K). After initiating the conversation, they withdrew and left deliberations about treatment options to the family (Dr. Q). They also stayed out of conflicts that arose during families’ deliberations: “They made their own arrangements and unified themselves. They didn't agree at first. Finally, the family came up with a consensus, including the patient and her immediate family” (Dr. W).
By contrast, a second group of doctors expressed awareness of their influence on decisions because of their role as experts. In some cases, their influence was implicit: “The tone of the conversation can influence them a little bit. If curative treatment won’t have much significance, sometimes we talk more seriously” (Dr. M). In other cases, their influence was more intentional: “If the doctor feels the patient needs to be treated, the doctor might push the patient and the family over to that side” (Dr. D). When conflicts arose within families during decision-making, these doctors felt responsible to negotiate a consensus (Dr. R).
Interestingly, some doctors considered it ideal to remain objective but saw that in practice, they could not avoid influencing decisions. Dr. G summarized her goal at one point to “let them (the family) make their own choices and not participate in their decisions,” but later admitted, “the doctor's own attitude toward the condition may directly influence the attitude of patients and their families.” Similarly, Dr. E stated in one instance, “I will speak up, but will not be involved in the decision,” but also noted later, “Every patient has a different understanding of the concept of palliative care. […] If you tell him in a different way, it will influence his understanding.”
Doctors across both groups believed that training in psychology could help them play a more effective and empathetic role in decision-making (Drs. A, B, I, M, W). Several also thought educating the general public about palliative care and death could foster more openness in palliative care communication (Drs. B, J, O, X).