"We explain that when you're sick and not feeling well is not a good time to have these conversations; it's when you're feeling well and relatively stable," Berra says. Timing is especially critical for the next steps conversation for those facing a potentially terminal illness, she says.
"We have found the conversation makes the most sense to a patient who is advanced in their illness but not yet appropriate for and accepting of hospice care," Berra says. "If a patient is too early in their illness, the situations presented in the next steps ACP do not make as much sense to them."
These steps are typically not handled by one facilitator in a close series of conversations, but more likely conversations by different facilitators over many years of care.
What supports the timing is that ACP takes place as a routine matter. If the concept is introduced individually and at random times, the patient might react with misconceptions about the reason for the discussion: "What do you know that I don't?" Berra says.
"We've made this conversation as part of our model of care," Berra says. "So lots of times that's easier for patients to accept when they just know we offer it to all of our patients at certain stages of their illness. So it's normalized."
Adds Hammes: "Every patient in our cancer center is approached about two months into their chemotherapy to undertake the first steps planning. It doesn't matter what their prognosis is. It doesn't matter what their type of cancer is. We want to initiate and say we approach all patients in our cancer center and we really prompt them and try to motivate them to take this one first step to do basic planning."
Even with a careful plan of care and good timing, an effective ACP program must teach the skill needed to have these conversations, Hammes says.
"Have you ever been in a situation where someone just told you they're very sick and you just don't know what to say?" Hammes says. "Our natural tendency is not to say anything. Physicians and nurses are often caught not knowing what to say and so they avoid the topic completely. Many people believe that they avoid the topic because of the content. My belief is that they avoid the topic because they lack any knowledge or skill in having this conversation. We have developed an expertise in this, training people to not only competently have these conversations but to comfortably have these conversations."