When we or those we love face serious, life-threatening illness, we have to make many personal and medical decisions that can be frightening, difficult and confusing. Compassionate and clear conversation is the key to easing confusion and fear and ensuring that decisions about care reflect what matters most to patients. That might be spending time with family. Or taking a long dreamed-of vacation. Or, it might be exercising all possible treatment options. For many patients, the priorities evolve over time, making conversation throughout the course illness essential to individual and family wellbeing.
We know that individuals who have conversations with their clinicians about their values, goals and wishes are more likely to receive the care they want, have fewer non-beneficial medical treatment, and report better quality of life.
And yet, less than one third of patients with end-stage medical diagnoses discuss their goals and preferences with their clinicians. When these conversations do occur, they often take place late in the course of illness when there is little time to translate them into meaningful actions. The conversations tend to focus on medical procedures and treatments rather than a patient’s values and priorities. Documentation of the conversations may be buried in the electronic medical record where it is difficult for other clinicians to retrieve and use the information.
The Serious Illness Care Program was created by a team of palliative care experts at Ariadne Labs to address these challenges. It is a system-level intervention centered around a Serious Illness Conversation Guide, structured questions drawn from best practices in basic palliative care. It serves as a framework for clinicians to explore topics that are crucial to gaining a full understanding about what is most important to patients. The Guide is one element of a six-part program that creates system-level support for clinicians to have these important conversations with their patients.
Our goal is for every seriously ill patient to have more, better and earlier conversations with their clinicians about their goals, values and priorities that will inform their future care.