Fifteen Dutch GPs participated; they were based at 14 different practices representing 11 different health centres located in two provinces around Amsterdam. Eleven participants were recruited through the researchers’ network, one through snowballing, and three GPs responded to an invitation sent by the academic network of GPs of the authors’ institute. Table 2 gives the participants’ characteristics.
Involvement of GPs in the SDM process
Moments to engage in conversations about treatment
Most GPs mentioned having conversations with patients about their physical and psychological wellbeing on several occasions throughout the cancer trajectory: before referral and after patients received their diagnosis or other bad news, such as disease progression. These latter conversations were mentioned as possible starting points for GPs’ involvement in the SDM process:
‘Often, when someone has received bad news, I’m definitely involved. So I get in touch with them and tell them I’d love to drop by and talk to you about this … to hear what you’ve learned. And whether you’ve decided for yourself yet?’
(GP10)
Initiative for the GP–patient conversation
GPs differed in their opinions about whether patients, oncologists, or GPs should initiate such conversations. A major consideration was the importance of tailoring contact to patients’ needs, with some GPs waiting for patients to take the initiative while others contacted patients more proactively. Some GPs mentioned that, during cancer treatment, patients generally did not express needing GP involvement. Occasionally, oncologists actively referred patients to GPs to discuss treatment options:
‘Only in rare cases, the oncologist goes: “talk to your GP about this”. Then it’s usually in the letter, uhm, and that’s of course fine by me. And that’s generally to do with me knowing the circumstances just that bit better.’
(GP01)
Supporting role of GPs in the SDM process
All GPs reported practices that potentially support SDM. These were organised into three categories: checking the quality of a decision, complementing SDM, and enabling SDM. GPs appear to deploy these strategies to ensure that decision making about treatments is conscious, where the patient is aware of the choice; well informed so the patient knows about the various possibilities and their pros and cons; and appropriate, in that the decision aligns with the patient’s values and preferences.41,42 Figure 1 represents these strategies that GPs may use to reach high-quality decisions.
Figure 1. Three strategies GPs use to support shared decision making (SDM).
Checking the quality of a decision
GPs may check the quality of a decision by asking questions to check if there are any doubts or deficiencies for making high-quality decisions. GPs mentioned practices to check patients’ choice awareness, information level, and/or values and treatment preferences. For example, GPs reported how they queried the patient–oncologist decision-making conversation, tried to gauge patients’ understanding about treatment information, and probed for patients’ thoughts about and expectations regarding the proposed treatment:
‘First, I check, like, “what have you been told? What stuck?” I ask them, “what have you heard from the specialist and what did you understand and can you tell me that in your own words?” Sometimes there’s a discrepancy already there.’
(GP05)
‘And then with a patient as in this [example] case, of course for myself I want to know a little bit more about, well, “how do you feel about this treatment, have you got any doubts, what would be important to you in the near future?”’
(GP11)
Complementing SDM
This category comprised practices to add to the SDM process by, for example, introducing the choice, clarifying information, and supporting preference construction. With regard to increasing patients’ choice awareness, GPs mentioned how they explained that a choice needed to be made between different treatment options:
‘And then I also like to say, as a GP: “ok, that may seem like the only option to you, but another option is actually to not do the chemo. Are you aware of that, that that is also an option? To say no?”’
(GP10)
Additionally, GPs structured, clarified, and added information when they noticed that patients missed or misinterpreted information provided by the oncologist:
‘When I notice any doubts, then I’ll definitely try to present as honest as possible a picture [of the consequences of the treatment] and explain that no treatment is also an option. And that it doesn’t mean they are on their own and that their life will end in suffering.’
(GP10)
GPs sometimes supported patients’ preference construction by exploring their values, appraisals of treatment options, and, based on that, their preferences for treatment:
‘One could look more at the bigger picture, like: “gosh, what is the meaning of life for you? What is quality of life for you? What do you expect from palliative chemotherapy? What do you expect to happen if you don’t get it?”’
(GP02)
Enabling SDM
GPs were found to enable SDM by organising additional activities to ensure that the SDM process will continue beyond GPs’ direct involvement. GPs reported how they acted as an intermediary between the patient and oncologist, aided contact between the patient and oncologist, or helped prepare these conversations:
‘I have called the oncologist once or twice with, “listen, you propose this, but I’m worried. This really is a very vulnerable person, we really shouldn’t do this”. And to have the specialist say: “that’s great, thank you for that — that gives me another angle into this conversation.”’
(GP10)
‘And if I don’t think I can do it [explain information] , they just have to make another appointment with the specialist and I will call the specialist to say “they have not understood a thing, you have to discuss it again”.’
(GP07)
Interprofessional SDM: GPs’ added value
Although they mentioned many examples of practices that support SDM about advanced cancer treatment, most GPs suggested that — when talking about SDM in abstract terms independent of patient cases — they were hardly involved. Cancer treatment decisions were considered mainly the expertise and responsibility of oncologists. Also, GPs reported that patients were primarily hospital-oriented and GPs only acted on patient demand:
‘Usually, I have no say in this [treatment decision making] . I don’t see patients again until after they’ve made a decision with the oncologist … They hardly ever come to me regarding a decision about whether to start chemotherapy. That’s usually beyond my scope.’
(GP09)
Moreover, some GPs mentioned being cautious about interfering with hospital treatment decision making, reflecting their perception of the role boundaries between oncologists and GPs:
‘If they’ve even already decided on something with the specialist and started that, then it’s a bit like … well, meddling in a decision that’s already been taken. So you don’t go, uhm, causing trouble.’
(GP11)
Nevertheless, GPs recognised their potential added value in treatment decision making and mentioned several reasons for this:
The unique position of the GP in the healthcare system
GPs pointed out their position as gatekeepers for specialised hospital care. The availability and accessibility of GPs may result in patients contacting them more easily:
‘Well, I do think that visiting a GP is an easier step than making a new appointment with a medical specialist in hospital. Many questions patients have, take us one or two phone calls to answer or ease their minds, whereas to see a medical specialist they need to make another appointment, another trip to hospital, waiting rooms, and, you name it.’
(GP05)
GPs believed that their longstanding relationships with patients enabled them to better tailor conversations about decisions than oncologists by accounting for patients’ medical history and social context:
‘But I also think that a GP is better qualified to check certain motives, more so than a specialist would. Think of certain aspects, like, what will family think of specific decisions? ’
(GP14)
Additional and different conversations about treatment
GPs indicated that their involvement offers patients an additional opportunity to deliberate on their treatment decision, which possibly reduces the sense of urgency and emotional load that may be present shortly after diagnosis. This way, patients have time to let the news settle and think about questions regarding treatment options:
‘Of course, it’s a very tense conversation, a bad news consultation like that. It often means decisions need to be made at short notice. I think the whole setting itself makes it difficult, where, once patients hear the word “cancer”, they miss out the rest of the conversation. So I think it’s definitely a good idea to have a second conversation about it.’
(GP07)
Primary healthcare provider in the terminal stage
In the Netherlands, GPs become the primary healthcare provider in later stages of palliative care. Some GPs pointed out that because of their specific expertise in this phase, they are able to help patients to anticipate the care offered if they choose to refrain from life-prolonging treatment or when no further life-prolonging treatment options exist:
‘Then I’ll also discuss my part in that [terminal phase] , as in, “what can I do for you? … I can make you as comfortable as possible, that’s my part. So with regard to pain control, chest tightness, nausea, things like that, weight loss, to respond to that as well as possible”. To me, that’s my role as GP, to guide them in this, but definitely also to state very clearly what other options may be, or how I may help at home, outside of hospital.’
(GP10)
As medical generalists, GPs indicated that they might be less focused on treating the disease than oncologists, thereby providing more space to consider refraining from disease-targeted treatment:
‘Well, I also explain a little, like … We ask a specialist to do what’s possible, but not everything that’s possible may be beneficial … That is pretty much the specialist’s tunnel vision: we provide treatment. Where we [GPs] come in from the angle of: “what is good for you?”’
(GP04)
Several GPs mentioned that being involved in early decision making about palliative treatment also helped build their relationship with the patient in preparation for the terminal phase:
‘Really, from the moment of diagnosis I make sure I keep in touch by calling now and then. And over time you see that contact intensifies slightly. And at a certain point, someone’s treatment is exhausted and they’re handed over to me. And I try to not make that moment the first time I see them and have to work up a plan.’
(GP01)
Requirements for fulfilling a role in the SDM process
In the interviews, GPs identified some requirements for their involvement in decision making about cancer treatment.
Collaboration with the oncologist
Good collaboration with oncologists was considered key for increased and valuable involvement of GPs. Many GPs also indicated that more insight into conversations between the patient and oncologist, and adequate reporting of such conversations, would be helpful:
‘Yes, I think I’d like to know more about that [treatment decision making] process and what is discussed, because you get the idea people get a more positive image than I have … I get the idea people think: “now I’m cured”. While I think: “well yes, you got a stay of execution”.’
(GP09)
Information about cancer and treatment options
GPs believed that limited knowledge of and experience with cancer and cancer treatment restricted their contribution to decision making.
Some GPs described the risk of providing patients with incorrect information. Information provided by oncologists about the diagnosis, treatment, and prognosis was therefore considered helpful:
‘But I notice, I’m not really trained to know: what chemotherapy, which side effects, life expectancy at which kind of metastatic cancer. But I’d certainly benefit from knowing that.’
(GP08)
Time to engage in conversations about treatment
Several GPs stated the importance of having sufficient time to engage in conversations about treatment. Having enough time would reduce a sense of pressure and help build trust:
‘It’s a conscious choice to visit someone at 5 pm. And that’s what I tell them: “I’d rather not come around lunch time, because I’ll have to rush and only have 10 minutes or 20 maybe. And this is not an in-between conversation, so I’ll come by around 5 and we can discuss this at length”.’
(GP03)
Trusting relationship with patient
A trusting relationship was described as essential. GPs indicated that having high-quality contact and pre-existing relationships with patients was important to support patients emotionally, comfort them, and build trust. According to some, relationship building helped with discussing patient values and weighing these:
‘So you can say: “gosh, you’ve had some really bad news. I know you’ve always … You’ve always said I want to turn 100 and how do you feel about that now?”’
(GP07)
Patient-centred communication
Patient-centred communication was considered important. GPs explained they needed skills to adapt conversations to different patient characteristics such as patients’ level of acceptance of their imminent death, health literacy, and spirituality. The ability to set aside personal preconceptions and to converse in a neutral and unprejudiced way were also regarded as necessary, to avoid influencing the patient’s decision-making process:
‘But I think the most important thing is just no taboos. Being open to discuss everything and really listen. Don’t give your own interpretation of what would I do, if … But really hear what the patient’s fear or need is. I think that’s the most important thing. And then see if you can somehow combine that in such a way that you actually let patients answer that question [what to do] themselves.’
(GP02)
