Shared decision making (SDM) allows cancer patients to choose treatment options aligned with their own values and preferences. It enables patients, with guidance from their care provider, to make informed decisions. However, this decisional responsibility comes with the fear of making the wrong choice for some patients, which may cause distress.
Burden of choice
Some burden of choice is an inevitable consequence of SDM, but this may be exacerbated if SDM is not applied optimally in clinical practice. In the push to implement SDM, key aspects of the process have been overlooked. For example, assessing correctly when patients prefer their clinician to make decisions, or providing proper support to patients in their decisional process.
Research bias
To date, most research has investigated the benefits of SDM for cancer patients. However, it is just as important to collect insights into the unintended negative impacts of SDM. Project leader, Dr. Marij Hillen explains, “We lack an evidence-based, comprehensive insight into the burden SDM poses on cancer patients.”
Balancing the research equation
With funds from KWF, Dr. Hillen and Dr. Inge Henselmans from Cancer Center Amsterdam will determine what elements of SDM negatively affect patients and seek to identify solutions to reduce this burden.
Their project has several components:
1. Investigate potential causes of SDM burden via in-depth interviews with patients and clinicians to explore the perception of burden and identify possible solutions.
2. Recognize features of clinical practice that impact the burden of SDM by observing and recording decision-making consultations, followed by patient reflections on their consultation.
3. Quantify SDM burden using a patient survey to elucidate how increased burden correlates to patients’ personality, sociodemographic or disease status.
4. Propose solutions to prevent or mitigate burdensome SDM by integrating findings with a critical synthesis of the conceptual/ethical literature.
This process will allow Dr. Hillen and Dr. Henselmans to identify causes, quantify the incidence, and define the nature of SDM burden on cancer patients. Their goal is to make justifiable recommendations to minimize adverse effects of SDM and ensure it benefits, rather than distresses, cancer patients.
Reducing the burden
“This project describes the burden associated with SDM and addresses a neglected part of the SDM movement. We will use this information to optimize the implementation of SDM in oncology practice,” says Dr. Hillen. She anticipates this will facilitate better care for cancer patients by minimizing potential distress and maximizing the benefits of SDM.
For more information contact Dr. Marij Hillen.
Dr. Marij Hillen
Dr. Inge Henselmans
People involved at Cancer Center Amsterdam:
Dr. Marij Hillen
Dr. Inge Henselmans
Text by Lynita Howie.