Patients Want Involvement in Treatment Decisions | UiA Research

The desire for agency doesn’t diminish in the face of a serious cancer diagnosis. In fact, patients actively desire to be part of the conversations surrounding their treatment, even when those conversations involve difficult choices. This isn’t about questioning a doctor’s expertise, but about aligning care with personal values and priorities. A recent study from Norway highlights this crucial aspect of patient care, revealing that even those who express trust in their physicians still seek involvement in decisions that deeply impact their lives.

Shared Decision-Making: Beyond ‘Doctor Knows Best’

“Patients do not want to be shielded from difficult treatment decisions,” says Associate Professor Jannicke Rabben at Norway’s University of Agder (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 recognize when they have a choice and how they can take part.” Rabben’s work, and a growing body of research, underscores the importance of shared decision-making in oncology and palliative care. This approach moves away from a purely paternalistic model – where the physician dictates treatment – towards a collaborative one, where patients are informed, empowered, and actively participate in shaping their care plan.

Rabben’s research interests span cancer care, shared decision-making, user involvement, person-centered nursing, palliative care, and family caregiver support. She has published extensively on these topics, including a 2024 systematic review and metasynthesis on shared decision-making in palliative cancer care published in Palliative Medicine (doi: 10.1177/02692163241238384). Her work builds on a foundation of clinical experience as an oncology nurse and advisor at the Norwegian Cancer Society.

What Does Shared Decision-Making Actually Look Like?

Shared decision-making isn’t simply about presenting patients with options. It requires a nuanced process. It begins with clear, accessible information about the diagnosis, prognosis, and available treatment options – including the potential benefits, risks, and side effects of each. Crucially, it also involves exploring the patient’s values, preferences, and goals. What matters most to them? Are they prioritizing quality of life, extending lifespan, or minimizing discomfort? These are deeply personal questions, and the answers will shape the most appropriate course of action.

Rabben and colleagues are currently investigating nurses’ perceptions of their role in this process. A 2026 study, soon to be published in the Journal of Advanced Nursing (doi: 10.1111/jan.16994), uses qualitative interviews to understand how nurses perceive their involvement in shared decision-making for advanced cancer treatment and palliative care. This research is vital as nurses often serve as a key point of contact for patients and families, and their support is essential for facilitating meaningful conversations.

The Role of Support and Recognizing Choice

The UiA research highlights a critical barrier to patient participation: many individuals simply don’t realize they have a choice. They may assume their doctor will automatically determine the best course of action and feel hesitant to question that authority. This is where healthcare providers can play a proactive role, explicitly inviting patients to share their thoughts and preferences, and helping them understand the range of options available.

This isn’t about creating uncertainty or burdening patients with complex medical details. It’s about fostering a sense of control and empowering them to produce informed decisions that align with their values. It’s also about acknowledging the emotional and psychological toll of a cancer diagnosis. Patients may be grappling with fear, anxiety, and uncertainty, making it difficult to process information and articulate their needs.

Beyond the Individual: Family Caregivers

The importance of shared decision-making extends beyond the patient to include family caregivers. Rabben’s previous work, published in 2025 in the Journal of Advanced Nursing (doi: 10.1111/jan.16705), explored the experiences and perceptions of both people with advanced cancer and their family caregivers regarding shared decision-making in palliative cancer care. Family members often play a vital role in providing support, advocating for the patient, and helping to implement treatment plans. Their perspectives are invaluable, and they should be included in the decision-making process whenever possible.

Limitations and Future Directions

While the evidence supporting shared decision-making is growing, it’s important to acknowledge the limitations. The UiA research, like much of the work in this area, relies on self-reported data, which may be subject to bias. Patients may overestimate or underestimate their level of involvement in decision-making, or they may be reluctant to express dissatisfaction with their care. The cultural context can play a significant role. In some cultures, patients may be more deferential to authority figures and less likely to challenge a doctor’s recommendations.

Looking ahead, further research is needed to identify effective strategies for implementing shared decision-making in diverse healthcare settings. This includes developing training programs for healthcare providers, creating patient-friendly resources, and addressing systemic barriers to patient participation. The European Association for Palliative Care’s 13th World Research Congress, highlighted in a 2024 publication by Rabben and colleagues (doi: 10.1177/02692163241242338), also pointed to ongoing uncertainty among both patients and families regarding their – and nurses’ – roles in shared decision-making, emphasizing the need for clearer communication and support.

What comes next: Ongoing research, like Rabben’s work at the University of Agder, will continue to refine our understanding of shared decision-making and identify best practices for implementation. Healthcare organizations are increasingly recognizing the importance of patient-centered care and are investing in initiatives to promote shared decision-making. This is a gradual process, but it represents a fundamental shift in the way healthcare is delivered – one that prioritizes the needs and preferences of the individual.