Maximum Conservative Treatment and Care
The vocabulary and syntax used in communicating with seriously ill people and their families is sometimes unfortunate. It is not an uncommon experience to hear care directed primarily toward comfort characterized by discontinuing treatments, stopping the antibiotics, and not feeding mom.
There are, however, more accurate and therapeutic ways of communicating about these very special times of life when a person with advanced dementia in Stage V, VI, or VII needs medical care tailored to represent individual goals and values. I recommend shifting the vocabulary and syntax away from what the patient doesn't receive to vocabulary and syntax representing what the patient will receive. Often perceptions of “there is nothing more we can do” prevail during these stages of dementia, and, frankly, nothing is less true. The terms “maximum conservative treatment” and “maximum conservative care” are terms that I use to represent the landscape of care options in Stages V, VI, and VII. Maximum conservative care is always part of the care
plan. It is the very foundation of the caring of one human being by another. Providing them a clean, warm, safe, comfortable, professional approach to caring well for them—making sure their personal needs of toileting, bathing, dressing, and oral care; social, emotional, and spiritual well-being; and expert pain and symptom management are being carefully and professionally managed. Maximum conservative care may, in fact, be the complete plan of care for a patient with advanced dementia. It may also be accompanied by maximum conservative treatments to include antibiotics both oral and intravenous, surgeries for fractured hips, and medical treatments for chronic illness. The transition from the combined maximum conservative treatment and care to maximum conservative care requires ongoing evaluation of patient function, disease and treatment burden, and modifiable quality-of-life determinants.
Dying for CPR
CPR has no role in advanced dementia, yet our default approach is to offer it to every patient. More accurately, we offer it to their caregivers. In my experience, caregivers feel as though they are making decisions between life and death when asked about CPR. Of course, it is unique that we offer an arguably ineffective treatment to persons who will not benefit from a trial of CPR. People get their information on CPR from the TV rather than medical professionals. The common vocabulary used is similar to that of running out of gas. If your heart stops, would you like us to restart it? It implies the possibility of success. If you run out of gas, would you like me to bring you some? CPR in advanced dementia is different, and the question is really much different. There is clearly something worse than a person dying, and that is the person dying badly. Dementia often gives the caregivers and the local medical establishment adequate time to formulate a response to a person dying with advanced dementia. It is, however, very difficult in good conscience to recommend CPR for persons with advanced dementia. It is hard to identify what is in it for them with unlikelihood of success.
The Unasked Question
The unasked question, as I have coined the term, is the question that never gets asked when a person with dementia has arrived in Stage VII and is unable to speak, eat, or ambulate. I call it the unasked question because the questions that are asked are represented in Figure 13.1 and can best be thought of as questions to determine therapies for identified diagnosis. For example, let's say that Diagnosis 1 (Dx 1) is the inability to swallow. Then the medial question and conversation is: Do you want your loved one to have a feeding tube? The answer will determine Treatment 1 (Tx 1). Yet there remains an unasked and vitally important question. Can you identify
it? The unasked question informs the goals for treatment. Only after the goals of treatment have been determined can we determine what diseasespecific treatments fit the goals. The unasked question is simply, “If your loved one isn't allowed to die from the natural progression of their disease, what will he or she be allowed to die from?” Of course, that isn't how you ask the question. I suggest that you need to contextualize, ask permission, and then ask the question with adequate foundational contextualization.
This question—what will he or she be allowed to die from—gets at the heart of the matter. It is the unasked question, and in Figure 13.1 it starts to inform goals of care to determine Goal 1 (G1) and Goal 2 (G2). This represents a departure from standard medical care and a paradigm shift toward goals based on care and healing.