In a recent study published in JCO Oncology Practice, Steffensen et al examined the process of shared decision-making (SDM) in which clinicians and patients collaborate to make health-care decisions according to the patients’ values, preferences, and medical needs. Although many seriously ill patients receive a great deal of care from family members, these caregivers are often excluded from the SDM process. The authors argue that patients would receive better home care and potentially more optimal clinical treatment if clinicians systematically involved family caregivers in decision-making. “Caregivers must be seen not merely as logistical supporters but as crucial partners in SDM,” they wrote.
Caregiver engagement is especially important for patients with cancer, as the integration of family caregivers into cancer-related SDM may lead to more realistic, sustainable, and effective treatment choices.
Barriers to Caregiver Inclusion in SDM
Several obstacles already exist that can complicate or impede SDM, according to the authors, making the integration of family caregivers even more difficult. Patients may not have sufficient knowledge regarding their condition and treatment options, making them hesitant to assert themselves when decisions are discussed. Clinicians often lack formal training in SDM and related communication skills, and some may perceive SDM as undermining their authority. They may also have concerns about confidentiality, family conflict, or autonomy issues, leading to misgivings about including family caregivers in the decision-making process. Caregivers themselves, in not wishing to overshadow the patient, may feel it is better to stay silent when treatment options are discussed.
Extending the Three-Talk Model to Caregivers
The basic three-talk model, with the original elements Team Talk, Option Talk, and Decision Talk, is an established framework for SDM that helps patients to understand care choices, compare alternatives, and collaborate with health-care professionals. The study authors adapted the three-talk model to explicitly integrate caregivers.
In Team Talk, which is the core basis for SDM, a patient-only inquiry is recommended at the start to ascertain whether the patient wishes to involve one or more family members in decision-making. If the patient opts to involve family caregivers, they must consent to participate at an agreed-upon level of involvement, and they should be provided with guidance on the decision-making role the patient has chosen for them.
In Option Talk, both patients and caregivers should be engaged to discuss available care options. Decision aids (eg, written summaries or visual guides), double questioning, and educational sessions can support this process and help ensure that differing perspectives are expressed.
In Decision Talk, clinicians work with patients and caregivers to arrive at a treatment plan, asking questions that acknowledge the vital role of caregivers and invite their perspectives. As the authors stated: “Establishing psychological safety for caregivers to actively participate in Decision Talk facilitates an inclusive conversation that reflects their understanding and emotional connection to the patient’s situation.”
“When decision-making is shared with all the important people involved in a patient’s care, including family caregivers, patients, and their clinicians reap valuable rewards,” the authors concluded.
Karina Dahl Steffensen, MD, PhD, of the Center for Shared Decision Making, Lillabaelt Hospital, University Hospital of Southern Denmark, Vejle, Denmark, is the corresponding author of the JCO Oncology Practice article.
Disclosure: For full disclosures of all study authors, visit ascopubs.org.
