Having Conversations In Spite of Cognitive Deficits Lois Ustanko, RN MHA MS Certified Advance Care Planning Facilitator
Explore Cognitive Capacity If there are questions or concerns about whether the individual has the capacity to provide information to put within a directive ask exploratory questions. “Do you have any challenges with memory.” If yes —”What have doctors told you about your memory loss?” If you have a concern that they may not have capacity you can ask that the individual be evaluated before helping them write a directive. Be honest with family members that have accompanied the individual. “Based on some of your dad’s responses I’m not confident he’s able to understand clearly what I’m asking. I’d like to have his PCP evaluate him before we go any further with his planning. Would it be okay if I connected with his PCP about this?”
Create an Environment Conducive to Conversations Schedule discussions at the time of day the individual is most alert and least fatigued Limit distractions Address factors that promote comfort Have they eaten? Are they hydrated? Have they used the bathroom? Has their pain been addressed? Allow extra time for the discussion — be calm and ask questions slowly If they look overwhelmed either take breaks or schedule a follow up appointment Strive to help them be comfortable and safe — perhaps even in their home
Using the ACP Conversation Script Start in the same manner as with all ACP conversations — have them recall past experiences witnessing loved ones with the aging process and the end of life How do these experiences inform their personal beliefs? Would they want their journey to be the same or different from how their loved ones experienced aging or death? Have the individual describe what “living well” means to them. Responses will guide them to the goals of care. What will ideal care look like to them if they have increased challenges with ADLs? “What do you worry about most?”
Modifying the ACP Conversation Script Be focused and direct to make efficient use of the individual’s cognitive reserve. Identify the most important topics and focus on these first. Ask simple questions — the script has long, wordy descriptions. Ask only one question at a time — pause and wait for a response — silence is okay. Avoid questions that require them to remember something that occurred recently. Consider using the shorter healthcare directive form — identify the agents & briefly describe their preferences.
Substitutive Judgment Meeting with Agents When Individual Cannot Participate Directly in Advance Care Planning What was really, really important to You CAN meet with the agent(s) or loved ones who know her? If we listed the 3 most the individual well to collect information that may important things she wanted us to know what would they be ? assist with future decisions. You WILL NOT write a directive. If the individual has a directive, review it with consideration for the current health issues. What has the individual discussed with the agent or family in the past? (Especially beliefs they expressed about care they would or would not want based on observations of others.) Are there religious, spiritual, or cultural beliefs that might impact decisions? What is their perception of the individual’s current quality of life? What questions do the agent(s) or family members have for providers? At Sanford we can write an Identify gaps in knowledge about supportive care ACP note to document this or decisions needed if the individual is at risk of discussion. dying.
Resources Your Conversation Starter Kit: For Families and Loved Ones of People with Alzheimer’s Disease or Other Forms of Dementia Produced by the Institute for Healthcare Improvement in collaboration with The Conversation Project
It’s Important It’s more difficult but more important to have Advance Care Planning discussions as soon as possible with loved ones who are developing cognitive issues. The reason is simple…if they do have a dementia (i.e. Alzheimer’s Disease) their ability to think and share thoughts will decline as the disease progresses. And…knowing wishes and preferences will be a critical guide as agents and family members need to make very difficult decisions in the future. Put the agent(s) and family members at ease —it’s normal for them to fear having the conversation. They may not want to express that their loved one might be losing their mental ability. Many are in denial even when they see clues or symptoms that cognition is declining. “Is this normal aging or something else?” Having the conversation about care isn’t an intrusion or unkind— it may be the most intimate way to promise the loved one they will be cared for even when they lose capacity to speak for themselves.
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