Identify Hope

It tends to follow along these lines: “I appreciate you reviewing Petra's history for me. It seems as though, and I am not surprised, you have a good handle on the implications of her illness for her life. You all have been through a lot and I commend you on engaging in this conversation today. We have covered a lot [contextualization]. I want to ask you a more difficult question, a question that gets a bit more at the heart of caring for Petra and a question that will help us understand how to provide her the best care possible. Would that be okay? [Ask permission.] In my role, I often take a moment to acknowledge that Petra got this disease, and you and your family are living with the illness. This isn't easy. I know that you recounted Petra's illness and I understand from my review and from your history that she has Stage VI dementia characterized by her inability to control her bowel and bladder, her wandering, and her inability to recognize people she loves. As you noticed, she is coughing after meals, suggesting swallowing problems typical of early Stage VII dementia, known for dependence on others for all her cares, including swallowing, speaking, and ambulation [contextualization and anticipatory guidance]. I can only imagine that you have given thought to how all this might play out, and therein lies the question I what to ask you. Knowing what you know about Petra's illness I can imagine that hope may be difficult to identify at times. However, that is the question that I want to ask. I am wondering what you and your family are hoping for from Petra's medical care at this time, knowing her and having insights into how she would choose to be cared for given her advanced dementia.”

Normalize Feelings of Relief in Grief

I attempt to normalize the relief in the following way: “I commend you on caring for Petra all these years. She prepared well and arguably that has been a blessing for you. However, this is still difficult. Often people experience all the decisions as a terrible restaurant with a menu of items you don't want. As we reviewed today, you have done a wonderful job in caring for Petra. I have a sense that this may be true for you. As we have been talking today, I listened closely and recognized something similar to many caregivers that I have met with over the years. Perhaps this isn't true for you, and if it isn't, please correct me. I can imagine that this journey has been laden with a fair amount of guilt. In fact, as Petra approaches the EOL, I would not be surprised if you are experiencing guilt in a new way. In the past, the guilt has revolved around decision making and the shifting landscape of your life together. At this time, I can imagine that the guilt may also be found in the anticipated relief that many caregivers experience when their loved ones dies. Is this true for you?”

Tailoring and Anticipatory Guidance

“As we have talked, Hans, it appears as though Petra has Stage VI dementia evidenced by her inability to control her bowel and bladder, her inability to recognize family, and her wandering. I commend you on watching over her and keeping her safe. It seems as though she is demonstrating signs of Stage VII, as she has a very small vocabulary and is only taking a few steps at a time. I think that we can anticipate in the near future she will exhibit more signs of Stage VII. She will likely have difficulty eating and swallowing and her food may go into her lung. She will likely eat and drink less and she will spend more time in bed. I would recommend we talk about how we will respond to these medical problems as they arise so that we have a response that best honors Petra and represents her goals as best we can. Would that be okay?”

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