From the structural analysis a number of themes emerged, these themes are explored in details below.
Informed consent, external constraints and vulnerability
In this study we see examples of how molecular biologists experience that informed consent can be influenced by external constraint. Below we present selected quotations showing how the themes and sub-themes of informed consent, external constraints and vulnerability are reflected in the interviews.
For instance, in MBU, Q1, Table 3, a molecular biologist employed at the university tells that patients must be informed of their options regarding treatment or trials and that their decision regarding these issues should be respected. This quotation indicates that informed consent should be respected without external constraints. However, in MBP, Q2, Table 3, a molecular biologist employed in a private biopharmaceutical company stresses that very sick patients would accept any treatment, they would accept the risks involved, they are vulnerable and constraint by the circumstances to a certain choice. MBU, Q5, presented below, illuminates the same issues telling that patients and research subjects should decide themselves, but that very sick patients are constraint by the circumstances to a certain choice.
... people make their own choices; if you inform people of the risks, they must make the decision themselves. The problem is if they feel they are forced into it. Some may feel this way; it depends on the person.
Respect for autonomy based on the patient's wishes and ideas, information and understanding
This study shows examples of how oncology physicians experience that informed consent or refusal is based on the patient's wishes and ideas, information and understanding. For instance OPC, Q3, Table 3, tells that the physician in dialogue with the patient performs a medical prognosis or risk-benefit analysis based on the patient's wishes and ideas, mutual understanding and respect. Furthermore, OPC, Q4, Table 3, stresses that the physician has a positive obligation to adjust to the level of the patient when disclosing information making sure that the patient understands. OPC, Q6, below, stresses that the tasks of the physician are 1) To disclose information so that the patient can make informed consent and 2) To respect this informed consent. However, OPC, Q6 also reflects the principle of respect for autonomy as a negative obligation, since the physician must respect the decision even though it is not the one he/she has recommended.
My task is to ensure as well as possible that they know ... receive information on what we can offer and what options are available to them in their situation. And that the information is communicated in such a way that it forms the basis of their decision-making. If they then decide something else, then that is that.
The principle of respect for autonomy does not apply
Oncology physicians experience that there are situations, where the principle of respect for autonomy does not apply. OPC, Q7, below, describes such a situation.
... when we have a protocol like that – there is the inclusion criteria ... the patient may meet all the criteria, but when I sit in front of the patient, I think to myself: this just does not work. This patient is in some sort of crisis or situation in which it is not fair to ask them to make this kind of decision. And then I can choose to say to myself that it is not fair. Then we give them the standard treatment ... once in a while I decide that they are not capable of making these decisions themselves. It is not fair to place the strain and stress of having to make such a decision on them – because it is a strain.
OPC, Q7 stresses that the physician's decision about treatment depends on the physical and psychological condition of the patient. Furthermore, the quotation tells that the physician avoids asking the patient to make a decision or not if the patient is in a difficult situation, since it is not fair or just under these circumstances to place stress on the patient.
Family and physician autonomy
... I prefer that the important decisions are made in consultation with the family – and that our decisions are accepted by the family. Because they are the ones who must live on and feel that things have been done in a decent way. So it is important for me that the family backs up the decision. It is preferable if we can agree on the decision, but if the family and I disagree strongly, we may be forced to make a decision that goes against the family. It is still in the family's interest ...
OPC, Q8, above, describes how the physician prefers making important decisions in consultation with the family. Furthermore, the quotation tells that the physician prefers that the family supports and accepts these decisions. However, if the physician and the family disagree, the autonomy of the physician overrides the autonomy of the family having the well-being of the patient in focus.
Falls beliefs, lack of understanding and acceptance
... an increasing number of patient complaints that ... may reflect the fact that we have become less competent – I am not sure, but it may reflect the fact that it becomes increasingly difficult for people and patients to accept that not everything can be cured. Yes, everything can be treated and everything can be diagnosed, and everything is ... I mean, if you make a scan, the answer is very precise – it is black and white: you are either ill or healthy. The fact that there may be shades of grey and the fact that results must be interpreted and so on is likely to become increasingly difficult for patients to understand.
OPC, Q9 tells that the number of patient complaints is rising. Patients believe that every disease can be cured and they do not accept the limits of treatment. Furthermore, the quotation tells that it is difficult for patients to understand that results need to be interpreted and that samples do not always give clear answers. This reflects that patients have falls beliefs, do not understand the information provided and therefore do not accept the situation.
OPC, Q10, below, indicates a shift in the action pattern of patients. Previously, the patient told the physician when to stop treatment if it seemed hopeless, these days oncology physicians have to set the limits for treatment themselves.
When we reach a point where my professional experience tells me that more chemotherapy will not be meaningful, it will only cause side-effects and it will not do any good. It is quite often me who suggests a termination of the therapy – rather that the patient telling me he or she wants to stop. There has been a clear shift in the patients' action pattern over the last many years.