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Cancer patients want to participate in difficult decisions

Patients, relatives, and nurses are often unsure about how this should happen, a new study shows.

Good communication and sufficient time are essential.
Sissel Eikeland COMMUNICATIONS ADVISER
Presented by: Presented by: Presented by: University of Agder
Published

Patients do not want to be shielded from difficult treatment decisions.

“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,” says Jannicke Rabben, an associate professor at the University of Agder.

She has 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. 

Researcher Jannicke Rabben explains that healthcare workers should be honest about the uncertainty surrounding treatment so that patients can make an informed choice.

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 Rabben interviewed.

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

They could have been at home with their family

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's deeply ingrained in us to continue treatment, even when a cure is no longer possible,” she says.

One nurse Rabben 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.

Spending Christmas at home or in hospital?

“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,” she says.

The nurse therefore asked the doctor whether there was a risk that the patient would be hospitalised with side effects during the Christmas period.

“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?

Many do not know why or how they can participate

Rabben explains that healthcare workers 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's 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 Rabben, patients often feel they lack the knowledge to have an opinion.

“They ask themselves why their voice should matter when they don't understand all the medical details,” she says.

Shared decision-making is a process

“Patients are in a difficult situation, surrounded by healthcare professionals who hold valuable information. But often both patients and health professionals are uncertain about what shared decision-making actually involves,” 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's a process over time that also involves other healthcare workers, 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,” she says.

Limited continuity

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 steadily less continuity and encounter an increasing number of different professionals.

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

Reference:

Rabben, J. Patient, family caregiver and nurse involvement in shared decision making in palliative cancer care, Doctoral thesis at the University of Agder, 2025.

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Read the Norwegian version of this article on forskning.no

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