HomeNewsNot everything medically possible needs to be done: insights from daily practice in patients with metastatic cancer

Not everything medically possible needs to be done: insights from daily practice in patients with metastatic cancer

Today, Ellis Slotman defends her PhD at the University of Twente on research into treatment choices and outcomes in patients with metastatic cancer. Her research highlights the complexity of everyday oncological care. Behind clinical guidelines lies a reality in which patients sometimes choose to forgo treatment, are unable to complete treatment, or prioritise quality of life over maximum medical intervention. The study also demonstrates how real-world data can contribute to better-informed treatment decisions and more appropriate care.

The dissertation shows that treatments and treatment outcomes vary considerably among patients. In daily practice, treatment decisions often deviate from guidelines, for example, due to differences in physical condition, resilience, and the burden of side effects. It also appears that the wishes of patients or their families are an important reason for choosing not to pursue treatment.

A clear example is the treatment of patients with metastatic bladder cancer. More than one-third of patients stop chemotherapy prematurely, often because the treatment is too burdensome. Of these patients, nearly one quarter die within a month of discontinuing treatment.

In addition, many patients who do complete treatment require dose adjustments due to side effects. This demonstrates the significant impact of factors such as side effects, patient condition, and treatment burden on the eventual treatment pathway.

Ellis Slotman: “What surprised me most was the difference between how we think care progresses and what actually happens in practice. Real-world data show what truly happens: how many patients do not start treatment or cannot complete it. I see that these insights regularly surprise physicians, because they do not always align with their expectations. That is understandable, as in practice they mainly (re)encounter the patients who do receive treatment. This is precisely why these data are so valuable and essential to support meaningful conversations about appropriate care.”

Less treatment can sometimes mean better care

Slotman demonstrates that less intensive care does not always lead to worse outcomes. For example, shorter radiotherapy schedules (hypofractionation) for pain caused by bone metastases provide pain relief comparable to longer schedules. In recent years, these shorter regimens have been increasingly used in the Netherlands, although variation between radiotherapy centres persists.

In the final stage of life, reducing potentially non-beneficial care, such as hospital or ICU admissions or dying in a hospital, can also contribute to a better quality of life for patients and their loved ones. In her systematic literature review, Slotman shows that such care is also associated with the well-being of bereaved relatives.

“A major added value of the study was mapping the differences in fractionation schedules that existed across the participating radiotherapy centres. This opened the discussion about different indications, the need for standardisation, and how different centres interpret the available literature. This, in turn, helped shape further research,” said Joanne van der Velden, resident in radiation oncology at UMC Utrecht.

Quality of life and symptoms at the center

In metastatic cancer, the focus shifts toward quality of life, symptom burden, and improving life expectancy, but longer survival is not the only relevant outcome. Symptoms such as pain, fatigue, psychosocial burden, and existential concerns have a major impact on daily functioning and quality of life. The dissertation shows that pain is highly prevalent in the final phase of life: more than 80% of patients experience pain during the last week of life. At the same time, structured symptom monitoring is associated with better pain relief. This underlines the importance of systematically measuring symptom burden and quality of life in the final stage of life.

Real-world data as a foundation for learning and improvement

The study is based on data from the Dutch Cancer Registry (NKR) and other national data sources. These real-world data provide insight into how care is actually delivered and what outcomes it achieves in daily practice, helping support better-informed decision-making. These insights are important to:

  • better substantiate treatment decisions and provide patients with more realistic information
  • learn from variation in treatment patterns and outcomes
  • strategically use real-world data for quality improvement and the further development of clinical guidelines

“We suffer most from false expectations; better managing expectations is a challenge, and real-world data can help,” says Tineke Smilde, medical oncologist.

Toward appropriate care for every patient

The findings underline the importance of appropriate care: not everything that is medically possible necessarily has to be done. In some situations, forgoing treatment is a conscious and appropriate choice. According to Slotman, this calls for better integration of real-world data into clinical guidelines, greater attention to shared decision-making, and the structural use of symptom monitoring and proactive care planning. This will help create care that is not only medically sound, but above all, valuable to patients and their loved ones.

More information

For more information about the research, please contact Ellis Slotman at e.slotman@iknl.nl. Read the dissertation: Balancing burden and benefit in advanced cancer: real-world insights into treatment considerations, patterns and outcomes. Previously published research by Ellis Slotman: Treatment for metastatic bladder cancer is often too burdensome.

About the research

Over the past several years, Ellis Slotman conducted her research at IKNL in collaboration with the University of Twente. Her dissertation, Balancing burden and benefit in advanced cancer: real-world insights into treatment considerations, patterns and outcomes, focuses on the use of real-world data from, among others, the Dutch Cancer Registry and national hospital and radiotherapy centre data to provide insight into treatment patterns, outcomes, and end-of-life care in everyday clinical practice.

drs. J.G.M. van den Elshout (Janneke)
Press relations