In the past, this conversation has been called a transition in goals of care. But transition implies a gradual process, and this one is discrete. Resetting goals of care takes initiative (and some courage) from a caring clinician, and many clinicians hate these conversations. Patients too—even when they have known this moment was coming—experience this conversation as a turning point in their illness.
The model for resetting goals of care comes from cancer care—it’s the conversation when further anticancer treatment is no longer expected to prolong life (and might do more harm than good). Up to this point, it’s common for oncologists to act as cheerleaders—keep putting up with those toxicities!—until it’s time to be ‘realistic.’ No doubt, a more sophisticated approach is to cultivate patient awareness and coping from the beginning of the illness, and evidence indicates a more front-loaded approach improves outcomes.
In addition, the cancer model doesn’t generalize to all illnesses. The trajectories of heart failure, renal failure, and dementia are distinctly different, and using the end of disease-modifying therapy to trigger this conversation doesn’t quite work. Much work is going on now to identify triggers in a variety of situations, and you may need to understand your own local pattern of care to figure out where this conversation will fit best for your patients.
In this section, we’ve included two different talking maps: the first map, PAUSE, outlines a conversation early in the illness meant to enable patients to anticipate a future change in goals of care. The second map, REMAP, applies to the moment in the trajectory of illness when goals of care need to be clarified, and often, reset.
These conversations are perhaps the hardest of any we teach—and depend on skills we’ve described in other sections. So if you haven’t looked through the other sections, check them out—what’s there will make it easier for you to do what we describe here!