Eight out of ten Norwegians believe that the next of kin are responsible for making decisions about life-prolonging treatment when patients cannot make decisions themselves. This is incorrect.
Colourbox illustration
What are our attitudes towards and knowledge about key parts of the health legislation which apply during end-of-life treatment? In two new surveys researchers have asked a representative selection of the Norwegian population about this.
- Six out of ten Norwegians answered correctly that doctors are allowed to end ventilator treatment when the patient asks for it, even if it causes the patient's death, Morten Magelssen says.
He is an associate professor at the Center for Medical Ethics at the University of Oslo and has contributed to both studies.
- Seven out of ten also knew that doctors are allowed to give large doses of medication to relieve pain and other distressing symptoms, even if it can quicken the patient's death, Magelssen explains.
- The fear that palliative treatment causes patients to die sooner is admittedly greatly exaggerated. According to previous research, it happens very rarely, he continues.
The doctor makes decisions about treatment if the patient is unable to do so
In one of the surveys, the researchers asked a selection of the Norwegian population to take a stand regarding the claim: "When the patient can no longer make decisions about treatment, it is the patient's next of kin who makes the decision".
- Eight out of ten said "yes". Only one out of ten said "no", which is actually the correct answer to the question, Magelssen says.
When the patient cannot make decisions about their own treatment, the next of kin have the right to be involved in decisions about their health care. The involvement should consist of expressing what the patient themself would have wanted. But the decision itself is given to the patient's doctor, in the Norwegian patient- and user-rights law.
- In the study we saw a widespread misconception. Many apparently believe that the next of kin have a far more central role - and a far greater responsibility - in decisions about life-prolonging treatment than what they actually have according to the law, Magelssen says.
- To prevent misunderstandings or conflicts, the doctor should communicate clearly what the next of kin's role and rights are, and explain where the responsibility lies, he continues.
Many believe that the next of kin should be allowed to decide treatment restrictions
- In the study, we examined how much a sample of the Norwegian population thought the next of kin's views should matter when there is disagreement about treatment, Magelssen says.
In the survey, the researchers described a patient with severe dementia, and asked: "Imagine that the doctor and the nurses think that the treatment should be stopped. They discuss this with the patient's next of kin. The family wants the treatment to continue, so that the patient can live on. How much weight should the next of kin's views be given in this situation?"
- One out of ten believed that the family's view should be given decisive weight, that the next of kin should be allowed to decide. Almost half, depending on how the patient's previously expressed view was described, believed that the relatives' opinions should be of great importance, Magelssen says.
- There is apparently a tension here, between the legislation, which clearly states that the doctor makes the decision based on the patient's wishes, and a widespread opinion in the Norwegian population that the wishes of the next of kin should be given great or even decisive weight, Magelssen says.
- The surveys share data on what the Norwegian population thinks the law says, and gives an indication of how they think things should be, he continues.
When are healthcare professionals at risk of prolonging life beyond what is good for the patient?
Since the 1950s, medical treatment has given increasing opportunities to extend people's lives. This has resulted in a new type of ethical challenge: When are healthcare professionals in danger of prolonging life beyond what is good for the patient?
Treatment restriction means ending or not starting treatment that could be life-prolonging, for a terminally ill patient.
- This decision is made when the patient requests it, or when it is considered to be what is best for the patient, Magelssen explains.
The treatment that is terminated or not started can be everything from ventilator, dialysis, and intensive care, to antibiotics, fluid, and nutritional treatment. A decision that the patient should not be resuscitated in the event of cardiac arrest is also an example of treatment limitation.
- If too much treatment is given, we are in risk of prolonging a painful death or a life with a lot of suffering, Magelssen says.
Treatment restriction can lead to ethical challenges
- The survey shows that a large majority, almost nine out of ten, supported that in a given situation it is right to end or not start life-prolonging treatment. Only four percent disagreed, Magelssen says.
- Treatment limitation is clinically, ethically, and legally accepted. However, that does not prevent it from sometimes leading to difficult decisions, disagreements, and ethical problems, Magelssen says.
- Matters about "when enough is enough" or treatment restrictions is the most frequent ethical problem that is brought up in the clinical ethics committees, which are found in all healthcare institutions and in around 20 municipalities in Norway. That is why this is important to do research on, he concludes.
References
Wikstøl D, Horn MA, Pedersen R, Magelssen M. Citizen attitudes to non-treatment decision making: a Norwegian survey. BMC Medical Ethics 2023, 24: 20.
Aarseth S, Horn MA, Dahlberg J, Magelssen M. Befolkningens kunnskaper og holdninger om beslutninger ved livets slutt. Michael 2023, 20: 11-23.
The first article is part of the project Etikk i helsetjenesten (uio.no), which is funded by the Norwegian Directorate of Health.
