“Patients do not want to be shielded from difficult treatment decisions,” says Associate Professor Jannicke Rabben at UiA.

“Even patients who say that the doctor knows best often want to be involved when the decision concerns what is meaningful to them. However, they need support to recognise when they have a choice and how they can take part,” she says.

Dr. Rabben recently defended her doctoral thesis on patient, family caregiver and nurse involvement in shared decision making in palliative cancer care. She interviewed patients, relatives and nurses at Sørlandet Hospital and the University Hospital of North Norway. Her aim was to understand how shared decision making works when patients have incurable cancer.

A sense of control over their own lives

Shared decision making means that the patient and doctor decide together. It is a legal right in Norway. But how does this work when the choices concern life and death?

Previous research shows that many patients with serious cancer wish to be involved in decisions. This was also the case for the patients Dr. Rabben interviewed.

“Being included in decisions gives patients a sense of control over their own lives. It is not about understanding every medical detail, but about understanding enough to be able to reflect on the available options. It is also about expressing what matters to them. This perspective is crucial when choosing between treatment alternatives”, she says

Dr. Rabben explains that the effect of some treatments is highly uncertain. As a result, some patients may spend their final months in a hospital bed with distressing side effects, when they could have been at home with their family.

“In such situations, the patient’s perspective is particularly important. Yet it is deeply ingrained in us to continue treatment, even when cure is no longer possible,” she says.

One nurse she interviewed described a young patient with small children. The patient had undergone many treatments without the disease being halted. The nurses felt there was nothing more to offer, but the doctor suggested yet another treatment.

“Both the doctor and the nurse knew that the chance of the treatment working was extremely small. They also knew that this was likely to be the family’s last Christmas together”.

The nurse therefore asked the doctor whether there was a risk that the patient would be re-admitted with side effects during the days at home.

“Most likely,” was the answer.

With this information, the patient and family wanted to reconsider. Would they spend their last Christmas together in hospital? Or would they rather be at home?

Dr. Rabben emphasises that health professionals must be honest about the uncertainties surrounding treatment so that patients can make an informed choice.

“They must talk about what the treatment may cost in terms of quality of life and time. And they must make it clear that it is legitimate to prioritise quality of life over life prolonging treatment,” she says.

Many patients are unsure why and how they should take part in decisions about treatment. According to Dr. Rabben, patients often feel they lack the knowledge to have an opinion.

“They ask themselves why their voice should matter when they do not understand all the medical details”.

“Patients are in a difficult situation, surrounded by health professionals who hold valuable information. But often both patients and health professionals are uncertain about what shared decision making actually involves,” Dr. Rabben says.

One of the key findings in her research is that shared decision making is more than a single conversation between doctor and patient. It is a process over time that also involves other health professionals, such as nurses.

“In conversations with nurses, it may become clear that the patient is actually unsure whether they want to continue treatment. Or that relatives need someone to talk to about their concerns. A good shared decision making process requires good communication among health professionals as well”.

Dr. Rabben notes that Norway has come far in implementing shared decision making compared with many other countries.

However, based on the interviews, she concludes that the healthcare system does not sufficiently facilitate it. Patients experience decreasing continuity and encounter an increasing number of different professionals.

“We need to consider whether it is realistic to achieve good shared decision making when there is less time for each consultation, and when the conditions for good collaboration between doctors and nurses are not always optimal,” she says.