Set the Agenda
After introductions, I often find it helpful to reflect briefly on why we have come together for the conversation and invite input at this time from anyone present as to what they were hoping we would talk about. The inherent pitfall is getting off on a tangent from the start. The clinician needs to lead this conversation.
In my experience, failure to identify the agenda up front leaves some family members less engaged, as they are waiting on a moment to talk about their agenda item. I typically give some sense of when I will cover the agenda items identified and ask them to remind me if I forget. I make certain to write the agenda down as they name the topics. Anytime a group of people gets together to talk about ACP with health care professionals, there is some degree of uncertainty, eagerness, and anxiety that agenda setting seems to defuse.
Deliver the Person With Dementia From Anonymity
With the agenda set, I comment that we have collected a good list of things to cover. I may also add in a few agenda items myself. However, I typically don't jump right into the agenda items. First, there is an opportunity to reflect on the personal aspect of why we are all coming together. There is
a person, and his or her life at the center of the conversation, so there is an opportunity to deliver that person from anonymity. This largely represents a social history that has been removed from a bulleted item in the medical chart to an expanded thoughtful review of the person's social history at the front of the conversation to acknowledge who the patient is as a person. Asking for permission to talk openly is important. As we know, people living with serious illness want to talk about ACP, but at the same time, they want sensitivity to when they are ready to talk (Wenrich et al., 2000)
State the Obvious
Stating the obvious is as easy and as hard as it may seem. This is something I learned during my palliative care fellowship from Dr. Ira Byock and adapted to persons with dementia and their families. Stating the obvious is nothing other than simply stating the obvious. What is the obvious thing to say when meeting with patients and families living with dementia? Stating the obvious is contrasted with asking the obvious. A pitfall to stating the obvious is that as the conversation facilitator you make an assumption that the obvious is the obvious. In fact, you may be wrong, but I would not let that prevent you from stating the obvious. In delivering the patient from anonymity the conversation almost always culminates in a history that outlines the family transitions from pre-diagnosis to diagnosis, to role change, chronic care, shared care, institutionalized care, and to EOL care. Paralleling this is the history of loss of iADLs and ADLs and the progression from Stage I to VII. You may be tempted to ask the obvious, such as, “How did that make you feel when your mother needed your assistance with bathing?” Or this question of the obvious, “Are you concerned your mother is wandering the neighborhood when you are at work?” The response to asking the obvious is often a single-word answer and an unspoken message of disbelief that you just asked the obvious. In contrast, just state the obvious: “I can't imagine how difficult it must be to worry about your mother's wandering and her safety.”
Stating the obvious gives you an opportunity to contextualize, honor the person with dementia and the caregiver, and provide a healing space for a reflective response from the family. An example of stating the obvious is founded in common themes of the family journey and the stages of dementia. During the progression of dementia people experience ambiguity and ambivalence to the diagnosis and progression. In fact, not all caregivers will be on the same page with knowing if this is real and if they are right in their interpretations. Equally inherent in the disease journey is the balance of independence and safety. Typically, caregivers value their loved one's safety over his or her independence, and the patient often values independence and may lack sufficient insight in the disease process to understand concerns for safety. The concept of contextualization is simply laying a foundation upon which to state the obvious.