Bioethics is not about technology. This is a controversial statement, since bioethicists are often invited to comment on new issues at the interface of technology and health. We comment on gene therapy, on big data and medical research, on the use of advanced imaging techniques in the courtroom. But the questions we address are not really about technology.
The technical intervention is a bright shiny object. It’s a distraction from the old questions that bioethics tackles. We ask about values and beliefs, about dignity and comfort. We do situate these questions in the contemporary context, and help parse whether a technical intervention will help patients, based on their values. We can talk about who gets to decide, and why. We can think with patients and clinicians about what dignity means for a person, and whether the life she is likely to have is one she would find worth living. We can ask about autonomy and its limits.
Advance directives for dementia
The ancient nature of bioethics’ questions has been raised recently by the creation of advance directives that specify that a person should no longer be offered food or fluid by mouth when he or she meets certain conditions. No technology here, for this is among the oldest of ethical questions. The issue is drawing increasing attention, both in court cases (in Canada, Bentley v. Maplewood Seniors Care Society, 2014 BCSC 165) and publications, including an article in the Hastings Center Report last June (P. T. Menzel and M. C. Chandler-Cramer, “Advance Directives, Dementia and Withholding Food and Water by Mouth,” HCR 2014; 44(3):23–37) and a January 19, 2015, story in the New York Times (“The Complexities of Choosing an End Game for Dementia” by Paula Span). The focus of this current discussion is not on the feeding tubes so often placed in patients with severe dementia—a practice that the American Geriatrics Society has singled out as its number-one culprit in medical treatments to avoid. No, what is new about these advance directives is that they decline oral feeding and hydration. Reviewing the ethical basis for these directives, I don’t find they pass muster.
To be clear, I support—enthusiastically—the right of patients to state in advance their preferences for end-of-life treatment. But it is also true that advance directives have their limits. Patients may choose to accept or reject medical treatments that are appropriate and offered. Patients with chronic illnesses often have a good idea of what treatments may be recommended to them. A patient with chronic lung disease who has been on a ventilator in the past is in a good position to say whether she would like that treatment again should she be in respiratory distress. For a person who contemplates advanced dementia, ruling out such options as a feeding tube in favor of oral feeding, or resuscitation, and/or a pacemaker can all make sense.
Discerning between basic healthcare and medical treatment
However, a patient cannot decline a basic healthcare measure that is not a medical treatment. People cannot request that they not be bathed, or kept warm, or covered. Apart from ethical considerations, regulations for healthcare facilities would not permit this. Oral food and drink belong in this same category of basic human care, rather than in the category of medical intervention. An advance directive cannot appropriately ask that basic nourishment be withheld from a person in end-stage dementia, particularly if that demented person requests or accepts food that is offered.
Can an advance directive be cruel?
One aspect of the problem with a request to refuse food and drink for a person in severe dementia arises when we try to picture who would implement that request. Severe dementia requires a great deal of hands-on care, and that care is often delivered by very kind, hardworking, underpaid health attendants. A surprising amount of dementia care is provided by unpaid family members.
Do we have the right and authority to impose this request on these possibly unknown future caregivers? What of their values and preferences, and how will this request feature among the other requests we make of them? We ask that caregivers for those with dementia understand vexing behaviors such as agitation and aggression as manifestations of the illness. In other words, we ask that caregivers be kind and caring even when the patient may be difficult to care for. Do we really hope for a day in which we ask caregivers to stand by while a confused and vulnerable patient who wants food is made to do without? The people who care well for patients with dementia are those most likely to have a hard time carrying out a directive to be cruel.
An advance directive that insists someone else not offer food and drink by mouth is one that refuses to acknowledge the other person at the end of that transaction. This is entirely too much autonomy. An advance directive can clarify values and preferences for future treatments, but cannot ask a person, an actual person, to do something he or she should not be asked to do. Some family members might support such a request, and if they are caring for a loved one at home, they may be able to comply without anyone else ever knowing. The focus here is on insisting that someone who does not agree carry out such a wish.
In our rush to promote autonomy, we neglect important, very old questions. The most important is this: How shall we live together in a community that accords dignity to each member?