Ethics Consultations and Patients With Neurological Diseases–Reply–I

We thank Dr Algom and colleagues for their interest in and comments regarding our recent article. Herein, we respond to the queries in their letter. Of the 255 patients in our series, 47 (18%) had a neurological diagnosis. Of these 47 patients (mean age, 68.0 years; median age, 74.5 years), 15 (32%) were diagnosed as having an ischemic stroke; 10 (21%), an intracranial hemorrhage; 7 (15%), traumatic brain injury; 3 (6%), dementia; and 2 (4%), amyotrophic lateral sclerosis. The remaining 9 patients (19%) were diagnosed as having a variety of other neurological conditions (eg, paraneoplastic encephalopathy, central nervous system vasculitis, granulomatous leptomeningitis, myasthenia gravis, generalized dystonia, and central nervous system lymphoma). One patient had brain death (in the setting of fulminant hepatic failure), but none of the patients were in a persistent vegetative state. Of the 47 patients, 16 (34%) were in the intensive care unit, 36 (77%) had a poor prognosis or terminal diagnosis, and 12 (26%) died before discharge. Although 28 patients (60%) had do-not-resuscitate orders, only 12 (26%) had advance directives. No clear trend was observed in the volume of ethics consultations involving patients with neurological diagnoses during the study period.

The ethical issues addressed in the ethics consultations involving the 47 patients with neurological diagnoses were similar to those involving the overall study population. Algom and colleagues were correct in assuming that issues related to patient decision-making capacity and surrogate decision-making were common; they were addressed in 40 consultations (85%). This frequency, however, was similar to that involving our overall patient population (82%).

Ethics consultations regarding patients with neurological disease also addressed the following ethical issues: (1) disagreement among staff members or between staff members and the patient and/or patient's family (34 consultations [72%]), (2) the withholding or withdrawal of treatment (32 [68%]), (3) quality of life vs end-of-life care (29 [62%]), (4) medical futility (24 [51%]), (5) patient autonomy (18 [38%]), and (6) advance directives (12 [26%]). Less common ethical issues were allocation of resources, legal issues, family conflicts, and religious and cultural issues.

We conducted further analysis of the cases in which the ethics consultations addressed the withholding or withdrawal of treatment (eg, mechanical ventilation, enteral nutrition, surgery, hemodialysis, pacemakers). This issue was addressed in 68% of the consultations involving patients with neurological diagnoses but only 52% of those involving the entire study group. Notably, of the 47 consultations involving patients with neurological diagnoses, 17 (36%) addressed the appropriateness of enteral nutrition (eg, placement of a permanent feeding tube) after stroke or brain injury. In contrast, of the 208 consultations involving patients with a nonneurological diagnosis, only 17 (8%) addressed the issue of the appropriateness of enteral nutrition. In 35 of the neurological cases (74%), the assembly of the entire multidisciplinary ethics consultation was not necessary because ethical issues were resolved by education of involved parties, intensified efforts at communication, and exploration of core issues. This result is similar to the result for the overall group (70%).

A number of inferences can be drawn from these findings. First, the ethical issues that prompt ethics consultations for patients with neurological diagnoses are similar to those for patients with nonneurological diagnoses. Second, these patients were diagnosed as having relatively common neurological conditions (eg, ischemic stroke and intracranial hemorrhage). Media attention paid to the Terri Schiavo saga and similar cases might lead one to believe that, among patients with neurological diagnoses, those who have persistent vegetative states account for most ethics consultations. In fact, none of our patients had these diagnoses. Third, ethical issues related to enteral nutrition appear to be more common among patients with neurological vs nonneurological diagnoses. Despite relatively clear guidelines regarding the benefits and burdens of such treatment, this finding suggests that clinicians involved in the care of patients with neurological conditions should become more familiar with these guidelines. Finally, as with our entire study group, knowledge of clinical ethics varied among clinicians, and education played an important role during the ethics consultation process. The ethical issues involving most of our patients with neurological diagnoses resolved during the ethics consultation process, which typically entails the discernment of ethical issues and concerns as well as ethics education of patients, clinicians, and other relevant parties.