Characteristics of the triads
During 2016, among the 45 oncologists who agreed to take part, 20 included 62 patients (Figure 1). The analysis concerned 47 consultations with complete data (three questionnaires and an audio-recording of the consultation) conducted by 16 physicians aged 33 to 56 (Table 1), and 12 interviews conducted with 4 of the 47 triads (different oncologists and work settings).
Patients were aged 46 to 87, and 68% were women. The tumor sites were varied, time since diagnosis ranged from a few months to 17 years. Relatives were aged 25 to 82, most were spouses (Table 2, Appendix).
The course of the consultation
Consultations (Table 3) mainly took place in the oncologists' consulting rooms (94%), and in most cases (87%) the objective was to offer the patient a new line of treatment. Exchanges focused on the announcement of disease progression, therapeutic alternatives, treatment goals, supportive oncological care, or palliative treatment options, with few digressions resulting from a need to change the subject or to reassure a distressed patient.
Oncologists dominated the exchanges (ratio of the number of words to the total number = 63% [39-87%]). They began the consultation by questioning the patient on his/her state of health, symptoms (83%) and/or by explaining examination results (66%). To announce disease progression, they adopted three methods: preparation of the dyad, slower pace of exchanges, use of euphemisms, or valorization of positive aspects.
"The disease is still around the liver and the lymph node, [...]. The good news is that there is no new damage in the lungs. All the other organs are spared". (Consultation 6)
To describe the situation, oncologists recalled using words like "disease progression", "cancer", "metastases", "tumor", and "nodules", with few references to "discontinuing treatment", "palliative chemotherapy", "palliative care", "life expectancy" or "prognosis". This is confirmed by the recordings. They mentioned prognosis in 6 consultations (13%), following questions from the patient or relative, generally towards the end of the consultation.
To refer to palliative care, oncologists mentioned measures associated with it: "home hospitalization", "respite hospitalization", "maintaining in the home as long as possible with assistance", and for pauses in treatment they attempted to explain that continuing chemotherapy was not beneficial: "they [the treatments] are not doing you much good", and announced it in the manner of a reasoned decision: "we consider it is not wise to resume treatment".
According to oncologists, both patients and relatives asked for information on disease status (79% and 60% respectively) and on the treatment plan (68% for patients and relatives alike), i.e. the objective of the consultation, and only a minority broached the issues of a therapeutic alternative (36% and 34% respectively) or prognosis (30% and 19% respectively).
Their place in the consultation
Half (49%) the relatives favored the patient-physician relationship, remaining relatively discreet although contributing to the discussion, but a quarter (26%) took over the consultation. One quarter (23%) in contrast intervened very little. Relatives generally did not intervene at the start of the consultation. They only spoke when areas where they considered they could contribute were broached, patient quality of life, treatments, and logistics. Husbands were attentive to the quantifiable elements of the disease and wives to the day-to-day management of the illness. Patients' children mainly focused on their parent's comfort.
"While my wife is undressing, there's something that puzzles me [...] in her results, and that is the Gamma GT". (Husband, Consultation 12)
"So, I have adapted his diet, with more protein... I try to find the right foods". (Wife, Consultation 43)
"That [loss of appetite] was the reason for our visit to her [the mother]. To try and give her new tastes, something different". (Son, Consultation 9)
To contribute to the consultation certain relatives called on resources derived from their professional activity (medical, relational, or linguistic skills) and they mostly approached the illness from a relatively outside (non-somatic and non-professional) point of view or based on their own experience.
"He [the patient] says to me "I'd like to see you [in my position]". But I've already been there, when I was in a car accident with my parents, I had broken bones all over and I stayed one/three months in bed!" (Wife, Consultation 46)
The patient-oncologist dyad was dominant, but according to oncologists, in 62% of the triadic consultations, both verbal and non-verbal interactions contributed to the way the consultation unfolded.
A presence that is beneficial
According to 93% of patients, the presence of a relative helped in the consultation, (85% positive comments in questionnaires). Relatives were able to detail, correct or add elements related to the patient's health, and help patients understand the results.
"He helped me ask questions it would not have occurred to me to ask, and his being there reassured me". (Patient, Questionnaire 32)
"It's more than essential for the two of us to be there, to hear everything, and to understand, because sometimes when you get home you find you haven't heard the same thing". (Wife, Interview 4)
For oncologists, the presence of most relatives was also seen as beneficial, making the announcement easier, avoiding misunderstandings, or enabling better understanding of the illness. One oncologist confirmed that it was more "comfortable" to announce bad news to a patient accompanied by a relative.
"There's nothing worse than announcing [bad news] to a person on their own. You won't use the same words, you won't have the resource person alongside who will provide support after the consultation, so it does change the content of the interview a little, and the way it is conducted". (Interview 11)
During the consultations, relatives were allies for patient and oncologist – the oncologist relying on the relative in cases of non-compliance, refusal of treatment, or misunderstanding by the patient, and the patient relying on the relative to back up his/her therapeutic choice. Thus, care management could be influenced by interactions within the triad.
"Patient: We talked about it. I don't know if you remember, about tablets, but I don't know if... maybe at least try it? [short silence]. Try it. But I don't know. It's your decision, isn't it?
Wife: Maybe it would not be as strong as the normal chemo, I don't know [...] Maybe it could temper things a bit, chemo-tablets....". (Consultation 1)
The relatives attending the consultation had acquired better knowledge of the disease and favored information-sharing in the family, acting as an interface with other family caregivers.
"Oncologist: Would you like me to draw another diagram?
Wife: Yes, so that I can get things clear for my son – for our children. It was he who wanted it mostly". (Consultation 28)
"I don't want to miss consultations because I like to have the doctor's opinion". (Wife, Interview 16)
But a source of complexity
While certain patients wished to be informed in direct manner ("she didn't beat about the bush", "since pretenses are not really the order of the day"), others were not ready ("I would have other questions to ask, but I'm not ready yet to hear the answers"). Thus, certain relatives exposed the patient to questions they did not wish to broach.
"To deliver information our first job is to listen, you need to listen to the person, and then to understand what the person really wants to hear, in fact it's the patient who guides us". (Oncologist, Interview 4)
The relationship with time is not the same for patients and relatives since expectations can differ. Patients envisaged the short term “How many chemo sessions?”. The same applies to physicians "I'll see you again in two weeks", "Let's move forward step by step, if you agree". Relatives have questions on the more distant future: apprehensions about what will happen, life expectancy, how to prepare for the future.
In these triadic consultations, oncologists also expressed the desire to examine patients privately, preserving their intimacy, in a suitable setting. Symptoms perceived as intimate or private appeared difficult to express for some patients in the presence of a relative. For relatives, prognosis was a difficult subject to broach in presence of the patient.
"I had a spell when I was having colored stools – not red, or brown, but... well it was... but now it's really brown, and – well – quite a lot.... Anyway... is it losing blood that could have contributed to me feeling weaker?" (Patient after her son went out, Consultation 9)
Of the 47 consultations, only two, on the initiative of the relative, broached the subject of his/her physical and mental health.
"In fact, when you accompany a patient, what I find difficult for the helper is that people always ask about the patient. If I had been able to see the psychologist, it would have been a time just for me". (Wife, interview 11)
Representations and perceptions of the triad – outcome of the consultation
During the consultations, oncologists maintained a balance, broaching the subject of palliative care while preserving hope, all within a short time-lapse. Both patients and relatives retained words that characterized the illness (“aggravation”, “cancer”, “progression”), but also words of hope (“not serious”, “confident”, “hope”).
According to oncologists, they provided complete information in only 17 consultations (36%) and thought they would need to return to the subject in later consultations. Although they broached the subject of prognosis very little, they (rightly) considered that in 41 consultations (79%), both patient and relative had understood that the disease was incurable.
"The disease has progressed, and the treatment has had to be altered and adapted, because the cancer has attacked the lumbar vertebrae – it's distressing", "We both know that the disease has developed a lot and that the drugs are there just to slow it temporarily". (Patient and relative, Questionnaire 41)
One patient even added: "Because at one stage I could see in your face that I wasn't going to get over this. I was very upset, doctor. Very upset." (Patient, Consultation 34)
Perceptions of the consultation (Table 4) were approached through the triads' responses to questionnaires. While patients and relatives had apprehensions of the seriousness of the disease that differed little (P=0.56), oncologists underestimated the perceptions that patients had of the seriousness of their disease (P=0.0090), but not those of the relatives (P=0.47). They also underestimated patients’ understanding of the words they used (P=0.0005), but not the relatives’ understanding (P=0.63). Alongside, the oncologist questioned the relative on what he/she thought of the patient's situation in only one consultation, and more patients than relatives (52% vs 39%) had no difficulty in understanding the oncologists' words.
Following the consultation (Table 5), relatives seemed to underestimate patients' ability to deal with the explanations by the oncologist, considering patients less serene than they said they were (P<0.0001). However, all felt trustful after these explanations (P=0.14).
Around twice as many relatives as patients (26% vs 16%) would have liked more information, on disease progression, prognosis, and treatments, and 7 relatives (15%) said they had not been able to ask all the questions they wished during the consultation because the patient was present. Certain relatives (11%) considered that it was not desirable to give the patient full information.
Nevertheless, both patients and relatives appreciated being supported in their plans and welcomed treatment postponement if it did not interfere with disease progression.
Finally, patients and relatives considered that oncologists listened to the dyad. However, it can be noted that at the end of the consultation no oncologist checked the understanding by the patient or the relative of the consultation by asking them to reword what had been said.