Welcome to Ethics Consult -- an opportunity to discuss, debate (respectfully), and learn together. We select an ethical dilemma in patient care, you vote, and then we present an expert's judgment.
Last week, you voted on whether it's ethical to keep a patient on a feeding tube after a dementia diagnosis. Here are the results:
1. Is it ethical to keep this patient on a feeding tube?
Yes: 76%
No: 24%
2. Would your answer change if the patient had late-stage dementia?
Yes: 42%
No: 58%
And now, bioethicist Jacob M. Appel, MD, JD, weighs in:
This scenario raises two related questions -- one empirical and one ethical. Feeding tubes can be of great benefit to patients with acute neurological insults such as strokes or traumatic brain injuries as they progress through their recoveries, as well as to patients who have trouble feeding themselves but remain cognitively intact like those with Lou Gehrig's disease.
Their value in improving or prolonging life in patients with advanced dementia is far less certain. According to the American Geriatric Society's position statement on the subject, "Feeding tubes are not recommended for older adults with advanced dementia" because data show that "hand feeding is at least as good as tube feeding for the outcomes of death, aspiration pneumonia, functional status, and comfort," while "[t]ube feeding is associated with agitation, greater use of physical and chemical restraints, greater healthcare use due to tube-related complications, and development of new pressure ulcers." So the first question one must ask is whether the feeding tube is medically indicated (i.e., serves the purpose of either extending or improving life).
Assuming there is a potential benefit from the feeding tube, the ethical obligation is for the providers to ascertain the patient's wishes. If the patient's cognitive impairment is only mild, it may be possible to discuss these preferences directly with him or her. The patient with the capacity to make such decisions may ask for the feeding tube to be withdrawn or even opt to voluntarily stop eating and drinking; alternatively, the patient may request continued tube feeding indefinitely.
It is a mistake to think of the former choice as suicide in any traditional sense. Loss of appetite may be a symptom of diseases like Alzheimer's disease and brain tumors, and individuals rejecting tube feeding might better be thought of as letting nature take its course. That should be their right. If they lack capacity, one should look for an advance directive or evidence from their family on what they would have wanted done in the circumstances.
In the absence of clear evidence, some jurisdictions allow providers and families to take into account how the patient led his or her life and to render a decision accordingly; other jurisdictions do not. In many cultural traditions, an ethical approach might look to the interests of the family as well, as they must live with the consequences, but this is generally not the approach of Western allopathic medicine. The far more challenging case is that of the patient who has no advance directive or third-party decision-maker and whose wishes remain unknown: should the default be a feeding tube or not?
It isn't at all clear how to weigh the benefits of extended life against those of potential suffering or loss of dignity; in theory, one might ask what the majority of people would choose in such a circumstance and act accordingly, which would statistically achieve the better outcome a majority of the time, but even if that method were desirable, gathering such information would prove challenging. However, it should be emphasized that a healthcare ethic that values autonomy does not inherently favor either tube feeding or not tube feeding as a default in the absence of evidence regarding patient preferences.
A far more complicated case arises when the evidence favoring a feeding tube is poor, but the patient or family insists upon it. To what degree are medical providers obliged to offer care that they believe to be empirically futile? There is a fundamental difference between imposing the value judgment that life in a particular state is not worth living and offering the medical verdict that a feeding tube for a particular patient is no longer likely to prolong his or her life. The latter situation is arising with increasing frequency, as families, often based on personal or cultural experiences, doubt the wisdom or honesty of physicians. Under these circumstances, there may be room to provide low-cost, non-harmful interventions without indication, but not higher-cost or overtly harmful interventions, if they are clearly futile.
Feeding tubes in advanced dementia patients impose a moderate cost and some risk to patients, and a small minority of experts like Claud Regnard question the consensus against their use, so whether or not to permit them when not medically indicated is a challenge that requires in-depth discussions with the patient and/or family and a careful cost-benefit analysis of the consequences.
Jacob M. Appel, MD, JD, is director of ethics education in psychiatry and a member of the institutional review board at Icahn School of Medicine at Mount Sinai in New York City. He holds an MD from Columbia University, a JD from Harvard Law School, and a bioethics MA from Albany Medical College. Appel is the author of the recent book, .
And check out some of our past Ethics Consult cases:
Can Pediatrician Fire Vaccine Refusers?