Maximum Conservative Treatment and Care
“Hans, I have to say that I can't begin to know how very difficult this must be for you to make decisions on behalf of Petra at this time of life, when she is living every day with two organs, her brain and kidneys, failing. It may seem like there is nothing more we can do. However, there is a lot we can do. I think it would be helpful to talk about how we can best care for Petra. Currently, she is being sedated to receive dialysis treatment that causes her blood pressure to be very low, not to mention the life-saving treatments for the life-threatening blood infections she is getting regularly. Her current care would be what I would call full medical treatment. Often, for people who are in this advanced Stage VI of dementia, we start to define other goals of care. Certainly, we will always provide Petra maximum conservative care to keep her safe, warm, and dry, with attention to her symptoms. I am wondering if we should be shifting from full medical treatments to maximum conservative treatments at this time due to her decline and approaching EOL. This would allow us to talk about what treatments match your stated goals for Petra. Would this be okay?”
Dying for CPR
“Hans, I know when Petra was admitted to the hospital the doctors and nurses asked if you wanted her heart restarted if it stopped, and if she quit breathing if you would want us to breath for her. When they asked, I know you consented to her undergoing these procedures. I can only imagine that the questions they were asking felt like you were choosing between life and death. If I am honest with you and if I understand how you have been seeing her declining, then the question isn't about restarting her stopped heart or breathing for Petra. The question isn't about choosing between life and death. If that were the question then we would always choose life. The question is, when Petra dies will we allow her to die peacefully with you at her side, or will you be driven from her side while she dies undergoing an attempt of resuscitation?”
The Unasked Question
“I know that the medical teams have asked you about a feeding tube for your mother, whom you love and for whom you have been caring. I think it is important that we talk about that, but I want to suggest that the decision isn't that simple or only about a feeding tube. This leads me to ask you a very difficult question that gets to the heart of caring for your mother. Is it okay if I ask you a question a bit closer to the heart? I think, as we have been speaking today, that we recognize that your mother is in Stage VII for VII stages of dementia and, honestly, we have recognized that this stage is where people with dementia approach the end of their lives. I know that your mother is no longer eating and in fact is not showing any interest in eating by mouth. I know the doctors have offered a feeding tube, and I want to talk about it but first I need to ask you a question that you might experience as being a bit callous, but honestly, it is a truly caring question that gets closer to the heart of the matter in caring for your mother with advanced dementia. I think we recognize that the natural progression of her disease is resulting in her dying from her disinterest and inability in eating. We can certainly give her a feeding tube. However, that won't change the natural progression of her illness, and it does raise the question that nobody has asked you. A feeding tube will certainly push your mother's frail physical state further, but not make her immortal. Therefore, it raises the question that if your mother isn't allowed to die from the natural progression of her illness, we can push her more, but then what is she going to be allowed to die from?”
In Petra's case, her family wants to continue to sedate her for dialysis while choosing not to treat her next septic episode. They want full medical treatments at a time of life when there is no benefit to identify and harm to the patient will occur. This calls for the unasked question to be asked in yet a different way. “I understand that you want to continue your mother's dialysis treatment and that you understand that without it she would be allowed to die peacefully. At the same time you have decided not to treat her next septic episode. In thinking about this, I have to ask you to acknowledge this very difficult situation, as I understand it. Your mother has a natural way to die peacefully and we are not going to allow that; rather we are going to push her forward to get something arguably worse and then not treat the sepsis? Do I understand you correctly?”
Mrs. Snoepwinkel is living with multiple terminal illnesses and, arguably, the care planning that a patient and family must navigate will directly impact her quality of life. The decisions made will impact how she lives and dies. There is clearly something worse than her dying, namely dying badly. In addition, her family's well-being and her legacy will be impacted by how her care is directed. Efforts for ACP will likely increase the chance that in the midst of the inherent sadness of the situation, both Petra and her family will be well.
Dementia is a terminal illness that most people will encounter in some capacity and role during their lifetime. Watch Over Me offers a framework to counsel patients and families living with dementia. An understanding of the stages of dementia as determined by a person's functional ability determined by iADLs and ADLs will help inform families and patients of their current situation and help to provide insight in to the future. The anticipatory guidance will help the patient and family in their journey as they transition in role, living setting, and EOL care planning. The stages of dementia and the phases of the family journey are practically connected, and Watch Over Me helps professionals to counsel patients and families as they navigate and make medical treatment and ACP decisions to help them live well in the face of a functionally debilitating disease like dementia.
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