Soft Paternalism I
Michael A. Gillette, Ph.D.

Mr. A is a 67 year old patient who was recently discharged from the hospital after experiencing a stroke. Mr. A now presents in the emergency room in a disoriented state. He is unable to eat and his wife institutes a no-code order as well as an order to withhold tube feedings. Mrs. A has been closely involved in her husband's care, appears to be a loving and supportive wife, and has had numerous conversations with Mr. A regarding life support decisions. She has a properly executed document which appoints her as having legal power of attorney for health care decisions for Mr. A. What should be done?

Ms. B is a 75 year old patient who suffers from severe dementia secondary to advanced Alzheimer's Disease. She has severe decubitus ulcers on her lower extremities and was recently subject to an above-the-knee amputation to ward of gangrenous infection. Ms. B is minimally responsive to verbal cues, but is cognizant of pain and sometimes indicates desires when questioned. Ms. B is presently being fed by gastrostomy tube.

Recently, after Ms. B experienced the amputation, Ms. B's family indicated that they felt the patient would not want to live in this condition. They have made a formal request that the hospital remove the gastrostomy tube so that "nature may take its course". Should the hospital comply?

Mr. C is a 15 year old resident of a state mental retardation facility who suffers from serious genetic anomaly and has a long history of poor nutritional status, reflux disorder and aspiration pneumonia. Mr. C is alert at the present time, but has experienced two hospitalizations within the last six months where he was successfully treated for pneumonia. The attending physician requested a gastroenterology consult, which recommended that Mr. C be made NPO (taken off all oral feedings). Mr. and Mrs. C (Mr. C's parents and legal guardians) are convinced that their son will die soon no matter what is done, and they refuse to allow a feeding tube to be placed. Furthermore, they do not want antibiotics to be used if their son should require future hospitalizations. They believe that Mr. C's recently increased lethargy is a sign that he is dying. The nutritionist involved is convinced that Mr. C will improve with better nutrition. Does the Training Center have the right to force treatment with a feeding tube over parental objections?

These three cases are very similar in so far as they each surround the plight of a patient who does not have the ability to eat in the normal oral fashion and who lacks the capacity to make decisions for him/herself regarding the use of artificial means of providing food. Furthermore, in each case a family member has stepped forward and requested that tube feedings be either withheld or withdrawn. Given the great similarity of these cases, one might assume that the ethical answer to each question would be identical to that in the other two cases. As it turns out, however, not only might the answers to the ethical questions be distinct, but the theoretical approach to each conundrum might be very different itself. It is the differences among these cases that demonstrates both the usefulness and the limitations of the theories that I have discussed in this newsletter over the past several months.

Last month I presented a soft-paternalist approach to making choices for people who are incapable of making their own decisions. This approach is based on the idea that what is good for one person may not be good for another. Whether feeding by tube is right for Mr. X will depend on Mr. X's values regarding tube feedings. If Ms. Y must decide for Mr. X, then she should consider what Mr. X would want if he could decide for himself.

The first case from above is precisely the sort of case in which soft-paternalism thrives. Mr. A's wife knows Mr. A better than anyone else; she has had conversations regarding g-tubes with Mr. A; she is concerned about Mr. A and seems to be representing his would-be desires; and she has been granted authority to make this decision by Mr. A. In a normal community hospital setting, it is entirely likely that Ms. A would be allowed to make the decision to forego therapy. In fact, the relevant Virginia statute clearly supports this approach and answer to the problem.

Case two is slightly more difficult, since there is no clear advance directive formulated by the patient. Still, in this case it seems reasonable to stick to the soft-paternalistic approach. The family knows Ms. B the best, and they might best be able to determine what she would have wanted. If the hospital objects, it would most likely claim that Ms. B's life is not as bad as the family assumes, and that Ms. B would not want to die of starvation. Although there could be disagreement here, the discussion is framed within the concept of soft paternalism.

The third case is not nearly as easy to judge. In the third case Mr. C has never been able to formulate any desires whatsoever regarding tube-feedings. It is not clear that the family knows the patient best, because he has been hospitalized since childhood. The family's wishes are not representative of the patient's desires, and neither is hospital policy, because the patient does not have and never has had any desires in this area. No one can represent non-existent desires!

The soft-paternalistic approach seems to be useless in the final case. What then could help in case three? Next month we will continue to explore the possibilities.