Shared Decision-Making and Treatment Planning for Patients with ALK-Positive NSCLC

Dr. Florez introduces shared decision-making as a collaborative approach ensuring patient voices, values, and goals become integral components of treatment planning, particularly crucial for young patients facing long-term therapy with implications spanning treatment selection, side effect management, and family dynamics.

Megan emphasizes the importance of healthcare providers treating patients as real people rather than objects of pity, noting that some early encounters involved providers appearing sad during visits. She prefers straightforward, honest communication without emotional overlay from clinicians. Additionally, she advocates for deeper questioning beyond superficial inquiries, as patients living with chronic side effects like nausea, constipation, and swelling may not spontaneously report these issues during routine appointments.

When discussing ALK-positive disease treatment options, Dr. Florez emphasizes offering choices rather than dictating therapy, allowing patients to maintain control over their treatment journey. Megan's treatment selection involved careful consideration of side effect profiles and life goals, including family planning discussions that influenced drug selection based on reproductive toxicity profiles of different agents.

Matt's role as care partner exemplifies team-based decision-making, with the couple approaching challenges collaboratively as they had throughout their marriage. His consistent attendance at appointments and transparency from healthcare providers created an environment of trust enabling informed decision-making. He emphasizes feeling supported and loved by the care team, which facilitated difficult treatment decisions.

Dr. Florez advocates for eliminating healthcare hierarchies, noting that white coats are not symbols of superiority. She emphasizes ongoing shared decision-making throughout treatment courses, including dose modifications and treatment holidays, rather than limiting collaboration to initial therapy selection. This approach becomes particularly important as patients with ALK-positive disease often live for years or decades, requiring continued partnership in care decisions.