We conducted interviews with 10 general practitioners with characteristics of participants shown in table 1. We identified 3 main themes: timing and conduction of EOL-conversations, factors influencing EOL-conversations, and modes of GP-oncologist interaction. All themes showed important challenges in regard to communication strategies or procedures within the cancer center and between general practitioners and oncologists (table 2).
1) Timing and conduction of EOL-conversations:
In general, GPs emphasize that these conversations should be offered early in the disease and that honest information is important. One GP uses very open and direct ways of communication. „I’m an advocate of the truth. I don’t encourage unrealistic hopes, but tell them [the patients] that they have an incurable disease.“ [GP 3,5] „ It’s my attitude that the patient has a right to know the truth. Even if he doesn’t want to hear it.“ [GP 3,55]
More GPs choose a rather cautious approach depending on the patient’s preparedness and try not to overwhelm with information.
„You don’t have to say everything always. There are patients who want to hear little or nothing.“ [GP 1,13]
Another GP explains: „It’s step by step. A process that evolves. [...] I know patients that shut down and then I don’t push them to hear it.“ [GP 11,20]
In general, GPs express difficulties of EOL-communication, most importantly the concern for emotional reactions and the fear to destroy hope.
„Actually, we also find it difficult to say: in this case we would stop the cancer treatment.“ [GP 10,35]
The responsibility for the initiation of EOL-conversations and the allocation of specific topics seems not to be clearly defined. Several GPs state that it is the oncologist’s responsibility to address prognosis and limitations of treatment/advance directives.
„I see it clearly with the specialists. To say, we can still do something or not.“ [GP 4,52]
Other GPs position themselves in a stronger role. This includes not only the initiation of these conversations but also the role in supporting and reinforcing communication during the whole course of disease. They emphasize their abilities in using more patient-centered language, their long-standing trustful relationship with the patient and their better knowledge about his social environment.
„Everything that was discussed in the hospital, they want it discussed again with the GP. [...] I see myself as the one closer to the patient. Who perhaps enjoys more trust.“ [GP 6,39]
Still, challenges arise depending on how these topics were communicated with the patient in the cancer center. GPs describe situations of conflict with perceptions of overly optimistic communication or the suspected withholding of information in the cancer center.
„It always depends on how the first conversation [in the cancer center] went. Did they fuel too much hope...“ [GP 4,55]
2) Factors influencing EOL-conversations:
GPs clearly describe that even when feeling the responsibility to start EOL-conversations, the lack of specific medical knowledge may be a hindering factor.
„These [cancer] therapy regimes, [...] what is still possible, and what is reasonable. In this, as GPs, we are not that fit anymore nowadays. It’s so complex, the third antibody or the third checkpoint-inhibitor for lung cancer, I don’t know it.“ [GP 10,33]
Because of the knowledge gap it is difficult for GPs to determine the risk-benefit ratio or to estimate the end of a cancer treatment. The rapid changes in oncological treatment options may even lead to avoidance of talking about prognosis and EOL at all and the risk of supporting unrealistic expectations.
„In most conversations I leave it [the prognosis] always open in the beginning. And I say that nobody knows how long it will take. Because we have new findings every day, new drugs are being approved.“ [GP 8,49]
On the one hand, GPs describe a relation of trust with the oncologists and a strategy of not interfering with the center’s care.
„I rely on the expertise of the colleagues in the hospital of course. Normally I follow the hospital’s recommendations.“ [GP 3,33]
On the other hand, some situations seem problematic when opinions about treatment goals differ. Some GPs choose patient-empowerment as a strategy.
„And there to be the advocate, that someone can live as he wants. If he still wants to go on a trip I say: discuss with your oncologist if a treatment break makes a difference or not. [...] I encourage to ask questions.“ [GP 10,37]
Another strategy is to approach the oncologist directly to express their view. But this seems to happen merely when general practitioner and oncologist are acquainted with each other. Otherwise, they try to navigate the dilemma between conflicting opinions or attitudes.
„When the oncologist has a different perception and we see it more pessimistically and then try to accompany with palliative care... that is often difficult.“ [GP 4,31]
Often GPs are left to wait until the cancer center takes the decision to stop the oncological treatment.
„It isn’t over until the hospital says: we have no treatment options left.“ [GP 8,49]
As cancer treatment may expand over multiple therapy lines it is uncertain when options will be exhausted, also impairing the initiation of EOL-conversations. GPs describe the lack of transparency about what was discussed exactly with the patient at the cancer center.
„Let’s say, I assume that the patient has been told the basics, you have this and that, the prognosis is this. I assume it, but of course I don’t know it for certain.“ [GP 11,40]
The patient may function as an intermediary for the missing information. But GPs say that sometimes it is difficult to rely on patients‘ statements because of the informations‘ complex and sensitive nature.
„I mean, sometimes you get strange answers from the patients, that, we all know, are completely different from what was said. So, they hear what they want to hear.“ [GP 8,57]
GPs emphasize that the disease understanding and coping process may take some time and that they play an important role in repeating and explaining the center’s information. They often have a much longer and continuous relationship with the patients and their families, while communication partners in the hospital vary constantly. All these aspects are underlined as of special importance in the delivering of bad news and EOL-communication.
„Patients understand, they listen, but not all information reaches them. And you have to tell some things repeatedly. Again and again. That is, I think, completely normal. They are often overwhelmed, aren’t they? With all this information they get.“ [GP 6,23]
Nonetheless, GPs often lose some or complete contact with cancer patients during the active treatment phase because of the close connection with the center with regular visits for therapy and follow-up. When cancer treatment comes to an end, care coordination is expected to shift back to the GP but this may happen abruptly. This again may hinder adequate EOL-care.
„The more terminal it [the disease] becomes at the end, the more it will be me who takes over the care, right?“ [GP 5,30]
3) Modes of GP-oncologist interaction:
The official way of receiving medical information from the hospital is the written report that is handed to the patient at discharge after hospital treatment or at a follow-up visit in the outpatient department. The oncological information is considered very useful by the GPs even for professional medical update (e.g. new cancer treatments). This differs considerably from the information about the content of prognosis communication and EOL-conversations.
„This is always a little bit difficult. To talk to the patient about prognosis when I don’t have all the information or I don’t know what is still planned generally.“ [GP 4,31]
„We can’t estimate the prognosis that well. This we have to leave to the center. But it would be good if we then would receive some information. Sometimes we find it out when talking to the patient.“ [GP 8,21]
GPs express different opinions when deliberating on which mode of interaction with oncologists about EOL-communication could be the most appropriate. Some state that written information is enough, including digital options.
„Well, a phone call is not necessary for this. But a short notice „advance directive was made“ or „palliative situation was discussed“, that would be good.“ [GP 1,41]
„On the long run I would say that everything should be placed on a digital platform. [...] It would be ideal and handy if the center would be logged in, too.“ [GP 10,47]
Nonetheless, it is of concern to GPs that the information and communication load is already overwhelming even without these additional topics.
For this reason some GPs say that a phone call would be the best solution. Still, challenges arise when considering the time limitations in the GPs‘ and hospital clinicians‘ workday, sometimes also differing in working hours and consequently the difficulties in reaching each other.
„We would wish that we could talk to the colleague also personally. Because it’s a very important phase of course. We tried everything at the beginning, yes. And now we see that the tumor grows and new metastases appear. And the patient gets sicker after the therapy. Then we should discuss: how far do we want to go?[...] Then it would be good if the colleague called us and told us his perception. So that we have a better basis for our conversation with the patient.“ [GP 4,45]
Prognosis and EOL-topics are not only difficult to discuss but also the documentation and information of GPs are challenging.
„Yes, exactly about this prognosis-factor we should be informed. But, I don’t have a good idea at the moment how to do it.“ [Niko 8,57]
Still, the importance to achieve an optimal information flow about this topic is emphasized. This may improve the relationship between GP and oncologist, the communication with patients and ultimately the patients‘ care.
„If both of us deliver our conversations in unison, it’s also easier. [...] It would certainly be good for the patient if we both say the same thing, right?“ [GP 5,32]
„And then it’s also good to grab the phone and say [to the oncologist]: let’s talk briefly and honestly. [...] This is sometimes also this challenging borderline area, so that we should relate to each other trustfully, that we both mean it well.“ [GP 10,57]