I recently attended a medical ethics seminar held at the Rehabilitation Institute of Chicago that reaffirmed medical practice guidelines about brain injury. Doctors continue to agree that it is necessary to wait before they can predict brain injury outcomes with reasonable, though they also admit not total, certainty. For traumatic brain injury (e.g. car accidents), the waiting period is one year. For anoxic brain injury (e.g. stroke or heart attack), it’s three months.
Many people with disabilities know someone who beat the predictions and amazed the doctors. But those people may become increasingly rare. In fact, evidence is mounting rapidly that the accepted guidelines are not consistently followed.
In yesterday’s blog entry, several major stories involving “rush to judgment” cases were discussed. On an MSNBC blog entry related to the Jill Finley case, several people told stories involving similar scenarios – with “mixed” outcomes. We also get calls from families several times a year – families feeling pressured by doctors to remove the life support from a family member mere weeks or even days post-injury.
Discussing the medical advice in the Jesse Ramirez case, Dr. Steven Miles referred to early decisions to end someone’s life as “malpractice” and “unusual.” Between the news stories and the phone calls we get, I don’t think that these scenarios are “unusual” any more.
Dr. Joel Frader is the current president of the Chicago End-of-Life Care Coalition. Frader co-authored a 2004 article with James L. Nelson, a bioethicist at Michigan State University. The authors bemoaned the difficulty of predicting outcomes “at those times during the course of treatment when there may be a ‘convenient’ window of opportunity to stop interventions and allow a patient to die.” (Nelson and Frader, “Brain Trauma and Surrogate Decision Making: Dogmas, Challenges, and Response,” Journal of Clinical Ethics, Vol. 15, No. 4, 264-276.) “A convenient window of opportunity” to cause death by omission before someone objects or the individual shows “too many” signs that recovery is underway, though he or she may be permanently disabled to some extent? This suggests that the “better dead than disabled” philosophy may be gaining wider acceptance within the medical profession than the public has been led to believe.
Frader and Nelson also questioned what they call the “orthodoxy” of taking only the patient’s perspective into consideration in health care decision making, without also considering the burdens to family caregivers. This intentionally echoes the arguments and sentiments of philosopher John Hardwig, author of the infamous “Is There a Duty to Die?”. (Hardwig’s answer is “yes,” demonstrating that a communitarian ethical framework can be just as hostile to the lives of people with disabilities as utilitarian ones.)
The pressures seem to be mounting. In a recent New York Times article (Jane Brody, “The Solvable Problem of Organ Shortages”), Dr. Robert Steinbrook, a consultant with the New England Journal of Medicine, reportedly said “potential donors included patients on ventilators after devastating and irreversible brain injuries, as might follow a hemorrhagic stroke, as well as patients with high spinal cord injuries and terminal musculoskeletal diseases like ALS, for whom further medical treatment is deemed futile.” Like Ruben Navarro? Readers of this blog will hopefully recall that Navarro – five days into a coma – was enlisted as an organ donor under the NHBD protocol. He continued breathing after removal of his ventilator and a transplant surgeon is now facing multiple criminal charges for allegedly trying to “hasten” his death.
Brody went on to write, “These patients are technically not dead. But if they are considered suitable donors and the families agree to donation, life-support measures are ended. …If the heart does not stop within a reasonable time, planned donations have to be canceled, which occurs in about one in five cardiac deaths.” We can safely assume, though, that the deaths proceed as scheduled.
Isn’t it time for some open public discussion about how the medical profession is making these judgments, and how they should be made? —Diane Coleman