OPPORTUNITIES FOR DECISION MAKING AND ADVANCE CARE PLANNING
Figure 13.1 represents a paradigm shift from the regular problem-based approach to caring for seriously ill people with multiple medical problems to a model to incorporate goals based on care, attention to symptoms, and healing. Inherent in this model is that the best care possible for seriously ill people is not found in the sum of the treatment options for each medical problem, but rather in the treatments that best represent a person's goals and values. This is particularly important in advanced dementia where more medical care and more medical treatments may actually lead to increased suffering, loss of independence, and decreased quality of life.
WATCH OVER ME: THERAPEUTIC CONVERSATIONS
The rest of the chapter will serve to provide a practical framework where you can take the academic foundations of dementia staging, the family journey, and anticipatory guidance and apply them practically to conversations around ACP for people with dementia. I encourage practitioners to take bits and pieces and use them to serve their patients. We often find ourselves in various settings in which this framework will need to morph into a different form to serve that setting. I hope that the framework and practical examples of syntax and vocabulary will assist in the conversation. Remember, our contact with the patient and family is a therapeutic intervention.
FIGURE 13.1 Concurrent Problem-Based and Goals-Based Care.
ACP, advance care planning. The guiding principles listed below are in a particular sequence. However, the sequence and use can vary depending on the clinical encounter. Figure 13.2 gives an overview of Watch Over Me.
Therapeutic conversations with patients and families living with dementia start prior to sitting down with the patient and family. Preparing for a conversation seems intuitive. However, it does take time, and experientially the time invested pays off during the conversation. Using a structured tool to review a person's chart can help to gather the information that will prepare one well in leading the conversation. Trust is foundational to the therapeutic ACP conversation, and knowing the pertinent background information prior to entering into the conversation will help bolster one's confidence as well as patient and family trust. In some circles, this chart review tool is called a rounding tool. When reviewing the medical chart, it will become overwhelmingly apparent that the attention to the medical detail often outweighs attention to the social, emotional, and personal experience of an illness such as dementia.
FIGURE 13.2 Watch Over Me®: Therapeutic Conversations in Advanced Dementia.
ADL, activity of daily living; ADU & NWTG, all dressed up and nowhere to go; iADL, instrumental ADL; EOL, end of life; NH, nursing home.
Create the Space
Think of the space for the conversation as a physical and emotional space. I often look for a private and quiet physical space that is unlikely to be interrupted. I check to make sure that a box of tissues is present in the room and that there are enough chairs present for everyone to sit and interact with one another. The emotional space takes time to create as well. Some of the practical factors about creating the emotional space start from the first introduction. I let them know who I am and what role I serve. I introduce other team members and medical learners I am teaching and ask for permission for their observation. When we are all seated, I like to make sure I know who is present and what their relationship is to the patient and each other, so I ask everyone present to introduce themselves. If other clinicians from disciplines are present, we make sure to introduce them and their roles in the conversation. I often thank them for taking the time to meet with us and reflect briefly on the importance of coming together to talk about caring for their loved one. Their loved one may be present; however, often in persons with advanced dementia lacking decisional capacity, the meeting may serve to only upset them. Creating the space of the conversation from an emotional standpoint continues throughout the conversation. The foundations of the conversation are formed largely in the next two sections on agenda setting and delivering the patient from anonymity.