Rebecca Dresser’s A Fate Worse than Death? article raises profound questions. Scientists have known for some time that certain biomarkers (specifically, elevated tau and beta-amyloid levels) correlate with elevated risks for Alzheimer’s disease. Soon, patients may learn about their own increased probabilities for developing this deadly and dehumanizing disease. This knowledge might cause these patients to adopt advance directives that reject spoon-feeding upon the arrival of advanced dementia. Some preemptive suicides may result. Dresser considers whether we should endorse or recoil from these responses.
Dresser’s analysis anticipates a time when biomarker information relative to Alzheimer’s disease risks is routinely made available to asymptomatic patients. Whether to disclose Alzheimer’s disease biomarker results is still controversial. The tests are imperfect. Dresser examines a study of 311 participants that revealed an eleven to twenty-six percent chance of developing Alzheimer’s disease within five years based on elevated tau and beta-amyloid levels. Many individuals with biomarkers for Alzheimer’s never develop Alzheimer’s (perhaps due to mortality from other causes, perhaps due to other protective factors). Scientists still lack a clear understanding of the relationship between neuropathological patterns and the clinical occurrence of Alzheimer’s disease. Because the tests for pre-symptomatic Alzheimer’s remain unproven, some experts assert that the tests should be deployed only in a research context. With patient demand, however, more and more people are likely to learn their biomarker results in the years to come. Their likely responses lead us to critical legal questions.
Individuals may respond to news of any terminal illness by making more extreme advance directive selections. Some may even consider self-destruction. But a diagnosis of Alzheimer’s disease gives rise to unique considerations. A person with cancer can defer serious thoughts of suicide until the disease overtakes her. An individual with Alzheimer’s disease (or other similar neurological decay) might conclude that she cannot afford a wait and see approach. “Suicide takes relatively sophisticated planning, as well as a strong commitment,” Dresser explains. (P. 658.) As Alzheimer’s progresses, cognition is compromised. The capacity for self-destruction may itself be destroyed, or the individual “may lose interest in doing so.” (Id.) Therefore, persons with an Alzheimer’s diagnosis or a biomarkers prediction are more likely to consider preemptive suicide.
Policymakers should discourage suicide based on Alzheimer’s disease biomarker predictors, Dresser asserts. As a legal matter, it’s an uncontroversial assertion: The great majority of states still criminalize assisted suicide. Those that permit it carefully constrain its availability to narrow sets of circumstances and impose significant government oversight.
Dresser’s more stilling query is whether we should permit competent individuals with positive Alzheimer’s disease biomarkers greater authority over their future care than the law currently recognizes. Advance directives derive from the basic right to refuse unwanted invasive medical treatment. Advance directives instruct care providers, in advance of a later incapacity, to withdraw life-sustaining treatment in the event of a vegetative or terminal condition. An advance directive becomes operative at a point in time when the patient is unable to make or communicate a healthcare decision. (Prior to that time, the patient retains autonomy over her own healthcare decisions by simply communicating her preferences, idiosyncratic or not, to her doctors.)
The varieties of artificial means of life support that are typically addressed in an advance directive (and authorized by the Uniform Health-Care Decisions Act) include antibiotics, chemotherapy, and mechanical respiration. An advance directive can also document an individual’s refusal of nutrition delivered intravenously (“tube feeding”). Tube feeding is a kind of medical treatment. Typically, it is delivered through the abdomen. State laws often clarify that tube feeding may not be withdrawn (even if the pre-incapacitated patient directed) when withdrawal would cause discomfort. Palliative care is one exception to the breadth of advance directives recognized by state law.
Aside from comfort concern limitations, state laws honor the advance refusal of tube feeding. Dresser considers whether an advance refusal of assisted feeding should also be recognized. In some instances, withholding food and water is medically appropriate because the patient has difficulty swallowing, chokes, or experiences discomfort when eating. No court or state legislature has yet considered advance refusal of sustenance by oral feeding. With the projected increasing ability of individuals to assess their own likelihood of experiencing the cognitive decay associated with Alzheimer’s disease via biomarker tests, more and more patients may include assisted spoon-feeding among the treatments they refuse in the text of an advance directive.
Because spoon-feeding is not as invasive as other medical procedures, it is unlikely that a court would find it to be a constitutional liberty interest. Cruzan v. Missouri (U.S. 1990) recognized an incapacitated person’s liberty interest in a pre-incapacity refusal of medical treatment. Government “invasions into the body” are repugnant to substantive due process, emphasized Justice O’Connor, concurring. Spoon-feeding cannot be characterized as a bodily invasion, so there would seem to be no constitutional imperative to give effect to an advance refusal of oral feeding assistance. Recognition would have to come in the form of expansions to state advance directive statutes.
Is the difference between intravenous feeding and assisted feeding only a matter of degree? Perhaps the difference represents a fundamental matter of personal autonomy – where moral considerations shift from the pre-incapacity articulated preferences of an individual to what the majority sees as being in that individual’s best interests. Perhaps not. Perhaps we should consider measures that give effect to individuals’ pre-dementia directions regarding spoon-feeding. Dresser, a Professor of Law as well as a Professor of Ethics in Medicine at Washington University in St. Louis, believes that “[t]he availability of [Alzheimer’s disease] biomarker tests could increase public support for such measures.” (Pp. 666-67.) Professor Dresser’s short article raises important questions that we will likely face with increasing frequency in the near future. “How to die” may become the next fundamental debate in elder law.