In the very near future, U.S. society will have to reckon with the healthcare needs of an elderly population larger than ever seen before. According to census data from 2000, there were 34 million U.S. residents aged 65 years or older (12% of the total population). By 2025, this figure is expected to rise to over 65 million (nearly 20% of the total population). In response to this reality, Catholic bioethicists living and working in the U.S. have been paying attention to the variety of end-of-life care options available.
In recent years, some U.S. physicians have begun to recommend an option with which many Catholic bioethicists might lack familiarity: voluntarily stopping eating and drinking (VSED). Catholic bioethicists are familiar with the critical issues regarding physician-assisted suicide (PAS) and withdrawing treatment from both voluntary and non-voluntary patients, and a few, including Ron Hamel and Maureen Cavanagh, approach VSED with similar ethical analyses. VSED has become another end-of-life option by a campaign using personal stories to sway public opinion; Catholic healthcare systems, however, have not yet launched a counter campaign.
I was recently invited to speak at a national conference, meeting in Seattle, on VSED along with a philosophy colleague, Paulette Kidder. Both of us expressed serious ethical concerns about VSED, particularly regarding the role of healthcare professionals in facilitating the patient’s choice to engage in the practice. In order for VSED to produce the desired result of death (which happens in one to two weeks), it is true not only that the voluntary patient must have medical competence sufficient for understanding the difficulties likely to be encountered while dehydrating oneself, the patient must also have access to appropriate palliative care provided by a medical professional (family caretakers cannot realistically do this alone). Depending on the jurisdiction, the withholding of nutrition and fluids, combined with the provision of palliative care, may or may not be legally risky for physicians and nurses.
The Seattle location for the conference was not accidental: state jurisdictions like Washington that have PAS laws on the books have become test environments for VSED. Since PAS regulations generally require a six-month terminal prognosis, patients living in such locations who suffer from a serious, degenerative illness that exceeds the six-month requirement become likely candidates for choosing VSED. But who is the patient most likely to choose VSED? What is the “representative case” to test?
Catholic ethicists typically pay the most attention to “hard cases,” in which a patient or designated surrogate contemplates whether and why it might be permissible to withdraw, withhold, or forego adjuvant treatment when the patient has a terminal or otherwise serious illness involving medically extraordinary circumstances. Consider, for example, a patient in the late stages of amyotrophic lateral sclerosis (ALS), who retains cognitive capacities and does not desire to remain alive. Hard cases like this one expose the fact that no ethical norm or civil law can cover every case; exceptions are always conceivable and frequently necessary. However, ethical wisdom and experience have also shown that these statistical outliers and other exceptions ought not serve as the basis for a change in normative positions or civil laws, as the representative cases might.
However in light of the age demographic shift, a more realistic candidate for the typical VSED choice is the person beginning to experience symptoms of dementia. The representative dementia case presents a gradual decline in an older adult, which is distinct from the harder (and less representative) case of early-onset Alzheimer’s Disease compellingly portrayed in the 2014 film “Still Alice.” Dementia is likely to become the practical context within which healthcare professionals will be called upon most frequently to provide assistance or support for a patient choosing VSED.
Assuming that VSED will never be an ideal choice, can it ever be the best choice possible in such cases? Proponents of VSED predictably presuppose individual autonomy as the highest value against which all other ethical claims are to be measured. Catholic traditions, alternatively, promote the value of respect for human dignity and free choice in terms of a relational autonomy, appropriately circumscribed by the social character of human life. This relational autonomy is perhaps most poignantly embodied in the care offered to a patient in a gradual process of cognitive decline, a situation that signifies to family caregivers and healthcare providers our common vulnerability to biological forces none can fully control. To recognize this fact is not to romanticize suffering decline, but to be realistic about human mortality.
Speaking within this tradition, Margaret Farley observed that the virtues of respect for persons and compassion are mutually determinative: respect tempers compassion by indicating the appropriate care one should offer and compassion tempers respect by focusing attention on the particular suffering person with whom one shares similar possibilities. VSED forces the question: what is the content of compassion in an autonomy-driven culture where patients who do not wish to experience the gradual decline of dementia need the support of healthcare professionals in order to facilitate their deaths?
If compassion is reducible to an obedient response to the request of another autonomous self who is suffering, then we have lost something terribly important in compassion and moral agency: reciprocity and the willingness to share the burdens of another as one’s own. Not even advocates, like Timothy Quill, say that physicians and nurses in PAS jurisdictions should always suggest VSED as an advisable life-ending option for every patient. If we, as Catholic ethicists, wish to enter the conversation about this emerging issue, then we need to ask ourselves: what arguments might best respond to this development in which our broader culture is denying mortal vulnerability and seeking a quick escape?