Background
Methods
Epidemiologic approach
Investigation centre | Speciality | Number of beds | Frequency of the QST: nb of included patients/nb of hospitalized patients during the inclusion period (%) | Nb of patients interviewed | ||||
---|---|---|---|---|---|---|---|---|
Conventional | Ambulatorya
| Total | Conventional | Ambulatorya
| Total | |||
University Hospital | Haematology | 39 | 14 | 53 | 4 / 41 (9.7) | 1 / 99 (1) | 5 / 140 (3.5) | 5 |
Cancer centre | Medical Oncology | 46 | 52 | 98 | 3 / 62 (4.8) | 0 / 247 (0) | 3 / 309 (0.9) | 1 |
University Hospital | Medical Oncology | 23 | 27 | 50 | 7 / 38 (18.4) | 1 / 136 (0.7) | 8 / 174 (4.5) | 5 |
Private clinic | Medical Oncology-RT | 31 | 19 | 50 | 6 / 28 (21.4) | 0 / 22 (0) | 6 / 50 (12) | 5 |
General Hospital | Onco-haematology | 23 | 35 | 58 | 6 / 33 (18.2) | 1 / 133 (0.7) | 7 / 166 (4.2) | 5 |
162 | 141 | 303 | 26 / 202 (12.8) | 3 / 637 (0.4) | 29 / 839 (3.4) | 21 |
n | Value | % | |
---|---|---|---|
Age, years | 29 | ||
Mean | 65,4 | ||
Range | 43–80 | ||
Sex | 29 | ||
Male | 12 | 41,3 | |
Female | 17 | 58,7 | |
Primary tumor | |||
GI (+pancreas) | 6 | 20,7 | |
Breast | 5 | 17,2 | |
Respiratory + ENT | 4 | 13,8 | |
Other solid tumor | 5 | 17,2 | |
Leukemia | 5 | 17,2 | |
Lymphoma | 3 | 10,3 | |
Myeloma | 1 | 3,4 | |
Time from diagnosis, months | 29 | ||
Mean | 44 | ||
Range | 0.8–186.4 | ||
Performance status | 28 | ||
Mean | 2,4 | ||
Range | 0–4 | ||
0–1 | 5 | 17,2 | |
2 | 6 | 20,7 | |
3 | 14 | 28,0 | |
4 | 3 | 10,3 | |
Number of treatment lines | 28 | ||
Mean | 2.8 | ||
Range | 0–6 | ||
0 | 2 | 6,8 | |
1 | 3 | 10,3 | |
2 | 9 | 31,0 | |
3 | 5 | 17,2 | |
4 | 5 | 17,2 | |
>4 | 5 | 17,2 | |
Quality of lifea
| 29 | ||
Mean | 2,9 | ||
Range | 0,2–9 | ||
0–2,4 | 16 | ||
2,5–4,9 | 8 | ||
5–7,4 | 3 | ||
7,5–10 | 2 | ||
Estimated Life expectancy | 29 | ||
<15 days | 1 | ||
15 days–3 months | 10 | ||
3–6 months | 8 | ||
6–12 months | 5 | ||
Not answered | 5 |
Qualitative analysis
Results
Descriptive results
Frequency of the questioning
Patient characteristics
Qualitative findings
He’s a patient who has high expectations from treatments… We never brought it up [our doubts] with him; neither had we ever sought to question such things… No, we never brought it up directly with him. Upon entering his room, the first thing he said was: “See… It [tumour localized on the face] is growing! Can we do something?” This was his question. And as we had discussed it just before going into his room, we could answer immediately: “Yes, we can try something.” Physician 4, hematologist.
YB: Have you ever discuss the current situation of uncertainty with the patient? MD: Not yet, because we still are in a dynamic of treatments. Current progression of the disease, while we were coming from a cycle of chemotherapy… let’s say that this issue hasn’t yet been addressed. Physician 27, oncologist.
YB: During the follow-up, did you discuss with this patient the fact that chemotherapy should be stopped at a certain point? MD: No, because until the third line… It’s only realizing that the third line [of chemotherapy] didn’t work, that we told ourselves that it wasn’t reasonable to continue. YB: So, it wasn’t discussed… Did the patient ever asked questions about that? MD: No. YB: Does it happen that patients sometimes ask about the possibility that treatments should be stopped? MD: Rarely… They’re always waiting for the next treatment. Physician 8, oncologist.
Personally, I have always told the doctor: “it’s you who decide, not me”. He’s the one who decides for my treatment, it’s not me. He’s the one who knows. And that’s it! I trust him; he’s a very good doctor. I trust him totally! Patient 12.YB: Were you able to talk with the team or the doctor about these uncertainties, these issues you’re worried about? P: I don’t want to talk about it… I mean… My doubts… It’s true, obviously, there’s some doubts. But let me tell you, they’re trying to address the problem; they are doing their job. You know, I’m not someone who’s very complicated at this level. Me, I take life as it comes… Patient 9.
P: Me? I don’t get into it, she’s the one who decides; not me, I know nothing about it! FMN: Do you sometimes give your opinion? P: No, no, I don’t give my opinion. She doesn’t even ask for it! She told me: “we’ll do chemo”, and she chose the treatment, it’s not me. FMN: Do you feel you had clear explanations about your disease, your treatment? How do you see things? P: I’d say she’s not very communicative… FMN: And do you wish you had more time to discuss? P: That’s not the problem… One has to worm it out from her. When you ask her questions, she answers, but she’s not open, like that… FMN: What questions do you ask? P: Questions about trying to know… It’s difficult because we, as patients, we know nothing about it. So if she doesn’t want to answer, she doesn’t answer or she avoids the question. [silence] Would another doctor have given me another treatment…? I don’t know… Patient 19.
The patient is still fighting; I think she’s willing to keep trying to find something that will improve her situation. […] I can feel it. She’s never expressed it but I can feel it. Physician 26, onco-hematologist.
YB: Did you discuss your doubts with the patient? MD: Doubts on what? About the treatment outcome? Or the likelihood of his general condition’s deteriorating? Well… Vaguely! Generally, one tends to say: “well, if we do nothing, we know where we’re going… Meaning often, hit the wall. If we do something, you may get a chance to avoid that. Well… avoid may sound overconfident, but at least it could improve the situation.” So that’s it, one leaves a… So for this patient, I think we discussed in those terms. And I think he answered: “If you think we can do something, let’s do it.” Physician 25, onco-hematologist.They rarely raise the question whether one day we’ll have to stop… They’re always waiting for further treatment. In general, when we know that we will obviously do nothing more, we tend to use kind of delaying tactic… It’s a bit hypocritical, but that’s how it goes. They’re told: “we’re going to hospitalize you for artificial feeding, to recover, etc. Personally, I mostly treat ovarian cancer, and we proceed step by step. When there is no more intestinal transit, there is no more chemo, there are too many contraindications. It’s done in steps: medical imaging, then you’re hospitalized for rehydration because of your general condition… Things speak from themselves; it’s not overnight that we say “it's over”. And then, it becomes a fait accompli because they’ve become weaker over time. Some of them die here, but they ask few questions. It’s unspoken but it is known. We don’t force the issue by saying it’s over! We finally end up understanding each other without using words. Physician 8, oncologist.
MD: I’m wondering if it’s a good decision. […] On the one hand, it’s difficult to take responsibility for the fact that if I renounce, I take away her chances. On the other hand, I know the dreadful prognosis of her disease. So it’s very difficult! YB: What will the decision finally rely upon, according to you? MD: I don’t know yet. Maybe on what she tells me. Her wish, because I’m going to try to speak to her as honestly as possible, not to influence her response… Because it’s easy to influence a response. Physician 29, oncologist.
If I have to make decisions? I don’t know if I could, personally… I’d have the feeling I chose the wrong thing… Patient 26.
Anyway, either we do nothing, or we do something that has a little chance! One must take a chance, somehow… Personally, I am pragmatic: It’s yes, it’s no, we’ll make it or we won’t… But if we don’t try… Patient 9
I wish they could find a treatment that’s not too difficult and that works, that’s it! […] I’ve already told them twice: “I’m fed up… Anyway, I’ll stop everything… we’ll see what happens!” – “Oh no, we can’t do that!” So, I said: “Yes, I know…” – “No, no, I’m not allowed”, he said, as if to say: “even if you wished…” I talked about it twice […] not to provoke, but because I’m fed up, you know, it just isn’t working!” Patient 26.P: Yes I trust them, but still, I have some questions! FMN: Yes? Which ones, for example? P: Is my 3 rd chemo going to do the same thing [pulmonary toxicity] or are they going to change it again? That’s it… Because I don’t want to be hospitalized for 10 days, every 21 days… FMN: Do you get answers to that? P: Not really… Because I have the feeling they don’t really know…, that’s basically it… Patient 4.I asked again this question, today: is it worthwhile? As he [the physician] says, there’s always hope, since we haven’t tried every treatment… But when I see myself like this… It’s hard to imagine that my life will last a long time. […] I think that we cling to any little thing, and if something exists, we try, even if sometimes we just want to give up… Even so, it’s hard to just give up. Patient 16.
Before deciding to begin chemotherapy, we discussed a lot about the advantages and the disadvantages [with the patient] … So I explained at lenght the risk-benefit balance without excessive valuation of chemotherapy, and really, above all, taking into account Ms. B’s view, and explaining the issues. So it wasn’t “Listen : here are the response rates, here is the higher survival rate with treatment, versus we do nothing and we do palliative care”… it’s not as clear-cut as that, this kind of discussion doesn’t help. No, I just involved her in what we can do, what we cannot… the importance of comfort care in parallel… She was aware of these issues very early. Physician 12, oncologist.
Efforts in communication are needed: the way of going about things, verbal and non-verbal communication, taking into account others around who may have influence, time management – one’s own timing, and respecting the pace of the person in front of us, what he says to other caregivers that he doesn’t say to us. […] In the end, one could find it rather reassuring to apply guidelines. But guidelines, either for undertaking or desisting treatments, won’t solve the question of how and when to discuss either with the patient. Physician 11, oncologist.Yes, [these multidisciplinary meetings] help. They bring me other points of view, especially those of the caregivers who interact with the patients at different moments of the day, not necessarily at the same time as I do. It gives me the opportunity to know what happened over the last few days, if I haven’t seen the patient every day, and to see if my feeling is the same as theirs, and how they consider things. So it is an opportunity to have different notions in time and other points of views. Physician 12, oncologist.
I told him: “We’re not doing chemo tomorrow.” And then, he looked at me with horrified eyes, and told me: “That’s not possible, if we don’t do chemo, I won’t be alright!” So, I said “but you can see that you’re not alright, now, despite the chemo!” So he was a little… he hesitated, and then he answered: “No, no, I want to do it! I can’t just not do it!”. That’s it, for him it wasn’t even conceivable. Stopping treatment wasn’t conceivable. I told him: “Listen, I can… If you want we can do it, but it’s the last one!” Actually, I cheated a bit; I gave in on that point, telling that we wouldn’t do anymore [chemotherapy]. It was a bit stupid, because he could have said the same the week after… and what would I have done? Physician 18, oncologist.P: I’d like to continue, but as long as… First of all, I’ve not defecated for 10 days, and there is still no sign… They’re trying their best to liberate the bowels, but that’s it, that’s where we’re at. YB: Is this the reason why chemotherapy is not being continued for the moment? P: No, we’re still doing it… But you see, I was told it would be long. For the previous time, it was already long, because I didn’t defecate for 14 days… YB: Would you need more discussion or explanations from your doctor about the current situation? P: [whispering] There’s no point… YB: Why? P: Because I very much hope, so there’s no need to… to know too much… Patient 20.
Individual and systemic barriers to a shared questioning
Individual barriers
YB: Is this feeling of giving up strong, when treatments are stopped? MD: Yes, I feel it intensely, because I was taught to heal people and not the other way round! We’re not here to tell… We do it every day, but it’s rarely easy. Physician 1, hematologist.It’s a bit like giving up, since as soon as we don’t treat the disease anymore, we know very well that it will evolve towards a tragic end. Maybe it’s a kind of personal failure statement too. One thinks “that’s it, I can’t stabilize or slow the progression of the disease!” But most of all, it’s the feeling towards the patient… one feels that when one decides to stop, it’s a kind of death sentence… That’s exactly what it is. Physician 26, onco-hematologist.
One has to acknowledge that it’s one’s job, and that this [end-of-life decision] is going to happen. But it’s true that we get more attached to some patients, and that’s natural […] I think that what matters most is that we do our best, trying to keep an eye inside on what relationship we may have with patients so that decision remains fair. We can’t always keep control, far from it, and that’s not the goal either. Not exposing oneself is also important to avoid getting into feelings of failure, etc. I’m quite aware of this, and I believe that I’m quite conscious about how I get involved, including on the emotional side. So it happens that, sometimes, I let it go, and fortunately we have a psychologist who helps to get it off one’s chest, when we find it hard. Physician 10, oncologist.
Systemic barriers
MD: We do out-patient consultations early in the morning, we hurry up to go see [hospitalized patients] or determine a goal because our time is limited. And sometimes we don’t have time… that’s it, our own time. YB: How does this influence your decisions? MD: In the sense that we don’t take the time to listen to what the patient has to say, nor the time to explain. […] We don’t take the time to let the patient set his/her pace, and say things… Physician 21, oncologist.Is it easier with experience? I’d say no, it’s less and less easy, because we’re not psychologically supported despite the difficult situations we may face, the bad news we have to give… We might deliver very good news, and 10 s later, we might announce death. So these sudden turnaround situations for hospitalized people or out-patients are difficult because we don’t have an outlet; we don’t have anybody to speak to about it with. Physician 1, hematologist.We don’t have the words, we were not trained for that. So we use everyday words without knowing if we’re… if they’re the right words, if they’re fair according to the psychological context. We were not trained for that… Personally I wasn’t trained. So we blurt it straight out, and we hurt… Physician 25, onco-hematologist.