Clinical Progress Note: Addressing Prognosis in Advanced Dementia

• Obtain the caregiver’s and/or patient’s perception of illness: “Is it OK if we have a conversation about what may lie ahead with your mother? Is there anyone else that should be present? What is your understanding of your mother’s illness?”
• Give relevant data: “Based on her current level of decline with complications and repetitive hospitalizations, I am worried that her life expectancy is likely measured in months rather than years.”
• Address emotions: “This must be very hard to hear. I cannot imagine how difficult it must be to see her in the hospital so often.”
• Elicit concerns and goals based on understanding key values: “Tell me what you are hoping for regarding your mother’s future care and what worries you have. Tell me what your mother would say if she could fully understand her current situation.”
• Present goals based on patient and caregiver values: “Based on what you have told me about your mother, she valued her interactions with family and her independence, and she would not want measures that would cause distress, especially when facing a terminal illness.”
• Be mindful of prognostic uncertainty: “While we cannot know for certain what will happen next, I am very worried that your mother will continue to aspirate even with a feeding tube.”
• Make a recommendation with permission: “From our conversation, I have an idea of what treatment might make sense to your mom. May I share my recommendation with you?” If they are willing, you might say: “As evidence shows that feeding tubes do not improve the level of family interaction or independence in patients with dementia and as your mother would not want any distressing procedures, I recommend that we do not place a feeding-tube.”
• Balance realism and hope: “Instead, we can focus on other ways to maintain dignity and quality of life for her even without a feeding tube.”

Conversations about goals of care and prognosis can be challenging and time consuming. At times, the conversations can be strained. The following tips are based on authors’ shared experiences to help in those challenging situations:

• Caregivers may show signs of emotional and/or cognitive strain: Recognize and name the emotional response and consider asking the family if they need a break to avoid overtaxing them.

“I can see that this is very difficult for you. Do you want to take a break and meet again?”

• Caregivers may have unrealistic hopes: Confirm the caregivers’ understanding of the situation, before assuming their hope is unrealistic. Try to reframe what they/we can hope for by validating their goals while avoiding unnecessary burdens or discomfort.

“I want to be sure that I have explained your mom’s situation clearly. Can you tell me in your words, what I have told you?” as this gives you an opportunity to clarify misunderstandings that may manifest as “false hope”.

“Together we can hope for the best and see if your mother can tolerate hand-feeding safely without causing any harm or distress.”