Patients’ desire for participation changes over the course of the disease
What treatment a doctor recommends for advanced cancer not only depends on medical aspects. His relationship to the individual patients and his own view of their life situation at their age play a role. This was found out by a research team led by Dr. Jan Schildmann of the Ruhr-Universität Bochum (RUB) together with colleagues from the University of Oxford. The RUB researchers also explored how patients perceive and evaluate the information they receive for clarification and decision making. The medical ethicists report in the journals The Oncologist and Annals of Oncology.
One of the most difficult challenges in medicine
“Treatment decisions in advanced, life-threatening diseases are among the most difficult challenges in medicine”, says Jan Schildmann, head of the North Rhine-Westphalian junior research group “Medical Ethics at the End of Life: Norm and Empiricism”. Often scientific data on the benefits and harm of therapies in such situations is scarce. At the RUB Institute for Medical Ethics and History of Medicine, headed by Prof. Dr. Dr. Jochen Vollmann, the scientists investigated how the cancer patients evaluated the explanation of potential therapies and what criteria the doctors based their decisions on. To this end, the researchers interviewed physicians working in medical oncology and cancer patients, and qualitatively evaluated the discussions.
Personal values influence treatment recommendations of doctors
When making decisions for or against a therapy, in addition to medical factors, the age and life situation of patients played a role – for example, whether they had a family. Thus, one of the doctors participating in the interview study said: “I think instinctively you feel that this is a young patient with a young family you need to make even more effort to try and help them live for a bit longer.” The doctors also made comparisons to their own age and their own life situation. “I most recently had a young woman … with teenage daughters, the same age as my daughters, so there was a kind of sense of … it shouldn’t influence, but you can picture the person the same as yourself”, as an example from one of the interviews. The results of the studies carried out in England are consistent with previously published results from Germany.
The wishes of the patients change over the course of the disease
In order to explore the wishes of the patients, the researchers interviewed people suffering from pancreatic cancer. The result: at the start of treatment, patients hardly processed the information they received; their confidence in the doctor was crucial. “I placed my life and my illness in the hands of the specialists and said you will do this right”, one of the participants explained. In the course of the disease, however, the people learned to process the doctors’ words better; then they wanted more information and to be involved in the decision on possible therapies.
Reflecting value judgements
“The results of this qualitative study cannot be applied to the entire cohort of oncologists, or all patients with cancer”, says Jan Schildmann. However, results of other research groups have also pointed out that doctors’ treatment recommendations are based not purely on medical aspects. “Doctors should reflect on the value judgments that play a role in the recommendations. They should also consider what information really enables patients to participate in decision-making according to their wishes at a certain time.”
Funding: The empirical study is part of a clinical-ethical research project carried out by the North Rhine-Westphalian junior research group “Medical Ethics at the End of Life: Norm and Empiricism”, funded by the Ministry of Innovation, Science, Research and Technology.
Bibliographic records: J. Schildmann J, P. Ritter, S. Salloch, W. Uhl, J Vollmann (2013): ‘One also needs a bit of trust in the doctor … ‘: a qualitative interview study with pancreatic cancer patients about their perceptions and views on information and treatment decision-making, Annals of Oncology, doi: 10.1093/annonc/mdt193
J. Schildmann, J. Tan, S. Salloch, J. Vollmann (2012): “Well, I think there is great variation …”: a qualitative study of oncologists’ experiences and views regarding medical criteria and other factors relevant to treatment decisions in advanced cancer, The Oncologist, doi: 10.1634/theoncologist.2012-0206