Monday, July 15, 2019
Note on Informed Consent and Decision-Making After Loss of Competency in Dementia Patients: A New Model
Lauren Padama recently published a Note entitled, Informed Consent and Decision-Making After Loss of Competency in Dementia Patients: A New Model, 28 S. Cal. Interdisc. L.J, 173-201 (2018). Provided below is an introduction of the Note.
After receiving a diagnosis of Alzheimer's, journalist Greg O'Brien analogized his experience with the disease to a plug in a loose socket. The light from the lamp starts to flicker, so he pushes the plug back in to the socket. It flickers more; Greg now becomes frustrated as he continues to push the plug back in. Eventually, the plug falls out of the socket entirely, and the light is extinguished permanently. This metaphor tracks the progression of Alzheimer's as a typical patient loses his memory and other core cognitive functions. It does not, however, consider that the cognitive decline is typically accompanied by a revocation of medical autonomy.
Most adults are familiar with the myriad forms they are required to sign before receiving medical treatment. These consent forms are designed to reiterate a physician's warning of the risks and benefits of the procedures to ensure that the patient is fully informed before agreeing to the procedure. This basic idea was famously articulated by then Judge Cardozo when he noted, "Every human being of adult years and sound mind has a right to determine what shall be done with his own body … ." Since then, every jurisdiction has developed a doctrine of informed consent, which requires the doctor to make a "reasonable disclosure of the available choices with respect to proposed therapy and of the dangers inherently and potentially involved in each." The physician's efforts to apprise the patient of the risks and benefits of the treatment or procedure would, however, be futile if the patient were unable to evaluate the risks and benefits of the procedure and come to an informed decision on whether to accept or reject treatment. Thus, informed consent also requires that the patient have the capacity to consent to treatment. For patients with Alzheimer's or dementia, the cognitive decline associated with the disease eventually precludes the patient from meeting the medically determined competency standards. This means that the patient can no longer give consent to receive or refuse treatment. The patient is therefore forced to rely on the judgment of the physician or another statutorily approved decision-maker for all medical decisions after loss of capacity.
Informed consent was created to preserve patient autonomy, but dementia effectively revokes a patient's right to consent or decline treatment. A dementia diagnosis is followed by a determination of incompetency at a time when critical treatment decisions are made, such as the decision to administer psychotropic medications. Most decision-makers follow a physician's treatment recommendation, which means psychotropic medications are frequently prescribed to manage symptoms of dementia. When patients refuse, caregivers in both professional and private settings covertly administer medication without the patient's knowledge or consent.
This article explains the challenges facing both the medical and legal community as the aging population in the United States leads to an inevitable increase in the number of dementia patients. In particular, the variety of accepted instruments used to assess competency has created variability in who is considered incompetent, which forces the patient to rely on statutorily approved methods of decision-making, such as conservators, family members, and advance directives. Since requirements for each vary by jurisdiction, this paper primarily focuses on California law. After discussing the deficiencies with each form of decision-making in the context of concealment of psychotropic medication, this paper explores a new approach to decision-making that focuses on the patient as opposed to the physician's recommendations. The proposed model combines elements of enhanced consent and supported decision-making to create a new method of decision-making. This method of decision-making gives a patient in the early and moderate stages of Alzheimer's more control over her healthcare decisions by forcing decision-makers to communicate directly with the patient instead of assuming the patient's preference. This aims to preserve autonomy in early stages of Alzheimer's by shifting the focus from substituted decision-making to decision-makers actually assisting the patient in deciding whether to accept or reject psychotropic medication and then articulate that choice effectively to the physician.
This paper begins with an overview of dementia and one of the most commonly prescribed treatments for Alzheimer's patients: psychotropic medications. I then discuss informed consent, the right to refuse medication, and assessing capacity both generally and in Alzheimer's patients. After explaining the problems with current competency assessments, I then review the most common methods of decision-making after loss of capacity for Alzheimer's patients as well as alternative methods of decision-making used in other populations. I demonstrate the deficiencies in the statutorily approved methods of decision-making by applying each method to a common real-world problem of medication concealment. Lastly, I illustrate the benefits of utilizing my proposed model, a hybrid of enhanced consent and supported decision-making. This model aims to preserve patient autonomy in the early stages of Alzheimer's while also providing a tool to plan for the later stages of the disease.