APPLYING THE PRINCIPLES OF WATCH OVER ME
Mrs. Petra Snoepwinkel is a 77-year-old retired professor of English literature living with her husband, Hans. Petra, widowed 12 years ago, married her long lost high school sweetheart, Hans, 8 years ago, and by all accounts they had a wonderful time traveling about the world.
Petra's high blood pressure and kidney function worsened to the point where she needed to be on dialysis 3 days a week. She started dialysis 2 years ago, and her kidney specialist is concerned that her quality of life is severely impaired and the burden of dialysis may be outweighing the benefit to Petra and her family. Common to dialysis, Petra develops a very low blood pressure when her blood is removed from her body and filtered through the dialysis machine. She has also suffered through life-threatening infections of the blood stream eight times in the last 3 months. She has been hospitalized each time and almost died on four occasions, requiring machines to support her breathing for several days. Over the last 5 years Petra's dementia has worsened and Hans has covered and cared well for her. Petra is dependent in her ADLs, and she is being sedated with medications to allow her to undergo dialysis. She is in Stage VI dementia, no longer recognizing her husband. She has never completed an ACP document, and Hans wants her to live as long as possible and get the best care possible.
During your review of the chart you see that Petra was diagnosed 5 years ago. She had gone to see her local clinician with complaints of forgetfulness and was referred to a specialist. After 4 hours of paper tests, many questions, blood tests, and special x-rays of the brain, with Hans at her side, she was told that she had dementia. In just 4 hours her common complaint of forgetfulness had just received an official and devastating name, dementia.
Following the diagnosis, Petra and Hans returned to life as usual. Petra had a diagnosis, but life hadn't changed. Hans focused on his good moments and covered for her deficits. Life was essentially unchanged. She remembered and forgot as much as his friends. She knew his family and friends and everyone in her family had always died from other things such as accidents, heart disease, and strokes. She had no intention of entertaining the diagnosis of dementia. At age 77 Petra was certain that if she had dementia, it would remain a small footnote in this chapter of her life. Hans and Petra lived in a lovely home in an upscale neighborhood and had enjoyed an active social life until 3 years ago, when Petra wandered off and got lost in the airport in Amsterdam while Hans was in the men's room. Luckily, Petra was quickly and safely found prior to boarding a plane back home to Connecticut. Hans kept this story to himself, but over the next year it became increasingly difficult for Hans to conceal
his wife's forgetfulness and changing functioning.
Setting the Agenda
Petra's forgetfulness had worsened and now impaired her ability to complete not only common tasks of daily living but also basic tasks of caring for oneself. Petra could no longer speak on her own behalf and conversations about anything medical upset her and provoked agitated behavior.
Hans had always attempted to have Petra talk about her wishes for medical care due to her diagnosis of dementia; however, she never did. Hans found himself trying to represent her wishes against an ever lengthening list of medical diagnoses and therapeutic options with the love of his life, Petra, losing all functions that she so valued in life.
You ask, “I appreciate you all coming together today to talk about Petra's care. This is really important and I have the time this afternoon to talk to you about a number of things that I identified when reviewing her chart, but first I would ask all of you what you were hoping to talk about today. I want to create a list of topics important to you and Petra's care. So, if you could, maybe just name the topics; we can cover the details as we proceed forward.” Deliverance From Anonymity (continued)
You transition with the Snoepwinkel family, “I appreciate the agenda that we have created and I think that we can cover what you all have identified in the time we have today. Prior to coming to this meeting today, I reviewed Petra's medical chart and it may be surprising to you, but it tells me very little about who she is as a person and how you all entered into her life. If it would be okay with you (asking for permission), I would like to take the next 5 or 10 minutes to better understand who Petra is as a person. I don't even know where she was born.”
Stating the Obvious
Here is an example: “I appreciate you sharing all that you have about Petra. I can only begin to imagine how challenging your lives have been in the last few years. I can honestly say you and Petra have been through a lot. I want to take a moment to reflect on what you have told me and recognize several key elements that you mentioned that seemed apparent to me. If I have interpreted the details incorrectly, let me know (contextualization). I want to commend you and your family. As I have listened closely and read between the lines, I can only imagine that you and your family have been going through times of questioning yourselves about what you were experiencing with Petra. Wondering, 'Are we right about what we are experiencing and is it really happening?' I heard you describe how as a family you have navigated the difficult role changes that have occurred when Petra lost her ability to manage her finances and go to work. Now her independence is becoming more limited and she is not enjoying or understanding this newfound lack of independence, and at the same time you all are more worried about her wandering off than her independence. I can imagine at several times in the last years you have experienced feelings of guilt in the midst of trying to care well for Petra.” Then just remain quiet and let the next steps unfold. You have honored their disease stage, family journey, and emotional experience.
Determine Understanding of Illness
I often contextualize and ask, “As I mentioned earlier, I reviewed Petra's chart and I have a really good understanding of her medical background. I spoke with her neurologist and her nurse at the adult day care to gain a better understanding of how the illness is affecting her on a daily basis.
I know that we have covered a fair amount already today, so I do not
want you to recount all the medical history, but it is important for me to have a handle on what your collective understanding is of what is going on with Petra in broad strokes, of her medical conditions in an itemized list to make sure that I know where everyone's understanding of her illness is at this time. Would it be okay to do that?” I often ask clarifying questions to determine the appropriate stage of dementia and then explain that to the caregiver.