Deliberation of alternatives
When the public health services cannot provide life-prolonging treatment which is available in a private hospital, the doctor has three alternative courses of action:
Inform the patient that a private treatment option exists.
Not inform the patient that a private treatment option exists.
Inform some patients, but not others, based on an individual assessment as to who will benefit from this information.
The committee realises that there may be good reasons for not informing patients about private treatment options. The information may put the patient in a difficult situation, the family's finances and stability are at stake, and the gain to be had in terms of treatment is not very great in any case. Providing good-quality information is time-consuming. Loyalty to public healthcare provision may indicate that the duty to inform primarily encompasses what is regarded as appropriate treatment within the public health services.
At the same time, some patients who are well able to pay and have a strong desire to prolong their life at its final stage may obviously benefit from the information. If doctors are able to determine who these patients are, they appear to be applying a personalised information strategy. This was the position that Dr Sundstrøm defended. Its weakness, as seen by the committee, is the challenge involved in distinguishing between the patients. Patients' ability to pay is not written all over them. The likelihood of making an error is high, and regardless of the outcome, the patients may feel that such concealed assessments on the doctor's part will amount to a violation of their autonomy. Today, patients with no ability to pay may also benefit from information on costly forms of treatment (6). A number of Norwegian patients have started fundraising campaigns on Facebook to pay for treatment in Norway or abroad. The patient may appear in the media to use his or her case politically in an attempt to sway the Decision Forum, politicians or others. Even without any ability to pay, they will have some scope for action.
The choice to inform some, but not all patients arises from an honourable intention of professional ethics to carry out good medical practice. In this specific case one may ask, however, whether this principle will prevail in the encounter with key values in Norwegian society, especially the idea of equality. One issue is that the two-tiered healthcare system, with private payment for costly cancer therapies, violates this value. It may be even worse for the patients to feel that they are treated unequally by the public health services when patients with the same disease receive different information from their doctor.
This equality argument has parallels with the conclusion drawn by the Clinical Ethics Committee at Haukeland University Hospital, which in 2015 argued that public hospitals should not administer cancer treatment paid for by patients themselves (7). A situation could then be imagined where two patients with the same disease were admitted to the same oncological ward, but only one of them received life-prolonging treatment. Patients with identical diseases should receive the same treatment by the public health services. The matter was submitted to the Ministry of Health and Care Services, which drew the same conclusion: '... treatment of patients with self-financed drugs that have been excluded from use or are under consideration by the Decision Forum may undermine the principle of equal provision of health services' (8).
The committee realises that information on costly private treatment with limited effect may have a negative impact on the life of some patients. Instead of abandoning medical treatment when the public services have nothing more to offer, patients may eventually upend their family's finances with very limited benefit and perhaps even major adverse effects. With good dialogue between the therapist and the patient, such damage should be preventable. Patients must be assumed to be able to take a critical view of costly cancer therapies with limited effect and what would be the right thing to do to maintain the quality of life at its final stage.
Another argument in favour of informing is that the dilemma we are facing here is a direct result of a deliberate prioritisation in the Norwegian health services. In the debate on prioritisation in recent years, the need for open and democratic priorities has been highlighted. As an illustration, the slogan launched by the Norheim Commission was 'Open and fair' (1). In a universal health service that belongs to us all, it is desirable that as many as possible understand the need to prioritise, and participate in the discussion of the criteria. In the name of openness and democracy, it is essential that patients who are not offered treatment for reasons of prioritisation at least gain insight into the processes in which they are involved.