Conceptualizations of palliative care: an “end of line” alternative, versus an “important part of the overall treatment”
Although physicians generally agreed that palliative care could help alleviate the suffering of patients with advanced cancer, two contrasting frameworks regarding its purpose and timing emerged during the interviews. Most physicians 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 physicians believed that palliative care could be complementary and integrated with active treatment.
Physicians who viewed palliative care as a last resort described it using phrases such as “there is no other way” (Participant 12 [P12]), “really at the end of the line” (P18), and “for elderly patients or those with poor baseline conditions” (P20). They said they were “prone to active treatment” (P16), and saw palliative care as conflicting with the goals of active treatment: “If the patient can still go to chemotherapy, then palliative care is given too early, as if he does not necessarily benefit (from active treatment)” (P13). They described seeking palliative care for two reasons: if active treatment was too expensive, or if the patient had a particularly poor prognosis (P13). They also did not believe that palliative care had the 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 can try to relieve the pain with symptomatic supportive treatment instead of aggressive treatment. […] because there is no way to prolong his life in palliative care. (P17)
In contrast, a minority of physicians viewed palliative care as a “important part of a comprehensive treatment” (P05), and considers that the goals of palliative and active treatment are “mutually transformative” (P01). Unlike the doctors in the first group, these doctors recognized that palliative care could contribute to lengthening survival in certain cases: “Palliative care aims to relieve the suffering of the patient. If it can prolong his life, even better. If it cannot be extended, it is still a relief for the patient” (P03).
A doctor in the second group recommended initiating palliative care for the same main reasons as the doctors in the first group: when the active treatment was too expensive, or the patient’s prognosis was particularly poor (P21). However, she conceptualized palliative care as integrated with active treatment: “Palliative care provides patients with palliative treatment in addition to cancer treatment, not only to control physical pain and side effects of treatment, but also to address psychological issues and improve quality of life” (P21). Other physicians in the second group placed less importance on the prognosis, stating that palliative care could begin “from the moment of diagnosis” (P02) or “from the start” (P16).
Despite their differing opinions, at least one physician from each group wanted education on the ideal time to integrate palliative care for patients with advanced cancer (P13, P21). Overall, only 5 out of 24 physicians reported having received training in palliative care.
Communication Approaches: How Hiding Advanced Cancer Diagnoses Leads to “Two Rounds of Dialogue” with Patients and Families About Palliative Care
Although conceptualizations of palliative care differed from physician to physician, approaches to communication were remarkably consistent. From the beginning, doctors followed the preference of most families to conceal the patient’s diagnosis, at least under the pretext of: “If the family asks me to hide [the diagnosis] of the patient, I will retain it. But because at that time, in fact, most patients are symptomatic, I think it would be very difficult in practice to completely hide it” (P05). Preserving this claim throughout treatment required physicians to engage in “two sets of dialogues” about treatment options—one with the patient and one with the family:
“We actually have two sets of dialogue. When talking to a patient, there are some things you might not mention. […] I will speak less of the evil, and I will certainly try to give the patient as much hope as possible. […] But when we talk to the family, because of the state of the medical environment, we can’t give the family too much hope. Because if you let the family have too high expectations, if you don’t meet them in the end, it will lead to medical disputes. So we talk more about the bad things with the family. (P03)
When it came time to talk about palliative care, these “two sets of dialogues” emerged through the interviews as a model of opposites. Doctors shared palliative care recommendations “first” with families (P01, P05, P08, P13, P16), and more “slowly” with patients (P21, P24). They spoke with patients “gently” (P04), “with optimism” (P05), and “euphemistically” (P11); but with families in a way that was “simple and straightforward” (P11), and “realistic” (P05, P13).
In addition to wanting to protect patients from despair (P04, P05, P09, P11, P13, P21), doctors worried if they weren’t shaping the information in a way that was optimistic enough for patients, families who wanted to protect patients would raise disputes (P07, P13) . They were also concerned that if they did not present the information in a sufficiently pessimistic way for the families, the families might be shocked if the patient refused and accuse the doctor of malpractice (P03, P10).
In the early stages of communication, some physicians described feeling ethical tension about compromising the patient’s health “The right to know” on their status (P09, P21). As separate dialogues continued, they expressed concern about the patient’s health “right to decide” between treatments, including palliative care (P14, P21). One physician described how compromising the right to know turned 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, his life and his death. The patient is not fully informed, and then perhaps he himself has little latitude in the matter. (P07).
Several doctors wanted training in the ethics of communication in palliative care (P01, P15, P18, P19, P21), both for the benefit of patients and to protect themselves from litigation: “Particularly when opinions differ between doctors and families, it can be important for us to conduct ethical training on how to make treatment decisions to ensure the interests of patients without getting into too much trouble” (P08).
Self-perceived roles in discussions of goals of care: objective advisors, versus influential experts
While physicians held separate conversations with patients and families about treatment options, they tended to view themselves in one of two roles. While some physicians strove to be objective advisors, others saw themselves as experts influencing discussions about goals of care.
Physicians who tried to maintain an objective role presented “advice” (P11, P23) or “pros and cons” (P16) on active and palliative treatment options to families, and sometimes to patients. They went on to draw the boundaries of their involvement, stating: “I have no subjective intentions to guide him (the patient)”, (P16) or, “It is impossible for us to influence the thoughts and ideas of the patient” (P11). After initiating the conversation, they withdrew and left the deliberations on the goals of care to the family (P17). They also stayed away from the conflicts that arose during the deliberations of the families: “They made their own arrangements and unified. They didn’t agree at first. Eventually the family came to a consensus, including the patient and her immediate family.” (P23).
In contrast, a second group of physicians expressed awareness of influencing patient and family decisions about treatment options, due to their role as experts. In some cases, their influence was implicit: “The tone of the conversation can influence them a little. If the curative treatment will not matter much, sometimes we talk more seriously » (P13). In other cases, their influence was more intentional: “If the physician considers that the patient should be treated [actively]the doctor could push the patient and the family to that side” (P04). When conflicts arose within families during discussions about goals of care, these physicians felt responsible for brokering consensus (P18).
Interestingly, some physicians considered it ideal to remain objective, but felt that in practice they could not avoid influencing patient and family decisions about treatment options. A doctor first said his goal was to “let them (the family) make their own choices and not participate in their decisions”, but admitted later, “the doctor’s attitude towards the disease can directly influence the attitude of patients and their families” (P07). Similarly, another doctor said in one case, “I will speak, but I will not participate in the decision”, but noted later, “Each patient has a different understanding of the concept of palliative care. […] If you tell him in a different way, it will influence his understanding. (P05).
Physicians in both groups believed that training in psychology might help them play a more effective and empathetic role in discussions about goals of care (P01, P02, P09, P13, P23). Many also thought that educating the general public about palliative care and dying could promote greater openness in communication about palliative care and discussions about goals of care (P02, P10, P15, P24).