Going to the doctor’s sounds like a fairly straightforward affair for most people. Explain your symptoms, get a diagnosis, and receive a treatment. After all, science knows best. Or does it?
According to Arwen Pieterse, communication and decision researcher at Leiden University Medical Center, a patient’s personal situation should be considered next to a healthcare professional’s expertise when deciding on the best treatment option.
This concept of Shared Decision-Making model (SDM) revolves around the idea that patients should actively participate in deciding between treatment options, or potentially not having treatment at all. This is especially important in complex decisions such as cancer treatments, the focus of Pieterse’s studies, as those treatments can be life changing.
“For treatment of rectal cancer, you could choose between having surgery or first having radiotherapy then surgery. Both are viable options, but they vary in the probability of their outcome”, Pieterse explains. “You have better chances of staying cancer-free if you do radiotherapy, but you also have an increased chance of becoming incontinent and sexually disabled, so there is a trade-off”.
According to Pieterse, many treatments, like these, always contain uncertainties, varying balances between the harms and benefits that should be communicated with patients. “If we see that five chemotherapy patients out of a hundred are alive ten years after their diagnosis, we should communicate to patients that they understand there is a 95% chance the therapy will not succeed, but that they still might experience the harmful side effects. The patient should then be allowed to decide whether they want to proceed with the treatment.”
Pieterse presents the SDM model as a four-step process. First, patients should be aware that they have choice in the final decision, instead of just listening to doctors, and that what they consider important is necessary to choose the best option. Next, information on treatment options should be shared, with risks and benefits all being presented in a clear manner. In a third step, the patient should discuss their preferences with the doctor, and then the final choice of treatment combines the medical expertise and the patient’s preference.
Although the SDM model is in the legal guidelines that healthcare professionals should follow in The Netherlands, why is it still being investigated? “The problem is that some medical professionals act as if there is a best choice before discussing it with a patient. They might think they involve their patients in the decision-making process, but they only do so to a limited extent. Because they believe they know best, they’re convinced they did a good job” comments Pieterse. She insists that many healthcare professionals still need to become aware of how to better involve patients into making decisions.
Pieterse also points out that this does not mean that all medical appointments require patient input either. “Many patients come to the GP with a flu, asking for antibiotics, because they want to be done with the infection. If the infection is due to a virus, antibiotics won’t help, even if patients can be very stubborn about wanting them. In that case, you don’t need to have share decision making since the professional’s medical expertise is enough to say that this treatment is not going to help. It is important for healthcare professionals to balance between these situations and others where patients should have a choice.”
Time can also be a struggle when you have to diagnose many patients in a single day, and it is the current focus of Mrs. Pieterse’s studies. “Time often makes patient involvement difficult. But the information shared during consultations may not all be that helpful to patients. Maybe some information can be viewed by patients before and after consultations. Some of the work could be done by nurses as well, as patients might more easily open up to them. We could win some time by teaching healthcare professionals to better convey information and to be strategic about the use of their time.”
Pieterse continues to teach Shared Decision Making in hospitals and at the university.
“I’m training medical students and healthcare providers to identify when it is essential to involve patients, their context and preferences, and how it helps in determining the best choices. I believe everyone in healthcare wants to offer patient-centered care, but what that means can differ from person to person. I teach them to be open to the idea that they can’t always know what is the best choice for the patient, how to ask open questions and truly give room for the patient to have a voice”.