A 2007 Not Dead Yet blog described “rush to judgment” cases where people who had sustained a major brain injury were denied life sustaining treatment before appropriate time had passed to determine if they could become conscious. It referred to an article co-authored by Dr. Joel Frader, now a member of the Northwestern Center for Bioethics and Medical Humanities, which asserted there was a convenient “window of opportunity” to withdraw respiratory support from newly brain injured patients before they could breathe on their own and possibly survive with disabilities. The blog noted that “the better ‘dead than disabled’ philosophy may be gaining wider acceptance within the medical profession than the public has been led to believe.”
In the years since then, rush to judgment cases have become commonplace. It is the ultimate one and done. In a recent New York Timespiece, health writer Gina Kolata describes what the article calls “the custom” or “the convention”. Adoctor sits down with family members within 72 hours of the patient’s admission to intensive care to discuss the patient’s prognosis, and whether they want to keep their loved one alive, or to remove life support….many doctors would describe the outlook as grim — most likely death or severe disability. Reported outcomes of patients who had severe traumatic brain injuries show that most times the decision is to remove life support. The patient dies.
In a tone of wide-eyed wonder Kolata reports on a study that indicates that doctors and family make “better” decisions when the patients receive life sustaining treatment a while longer.
Kolata does not mention that such a short time frame as 72 hours has always been controversial among both disability activists and health care professionals. Neither does she depict making quick, irreversible decisions as reflective of both the health care disparities faced by people with disabilities face and of the broken health care system. Yet she deserves credit for bringing this simple, understandable study to the attention of the newspaper’s readership.
The study was undertaken after Yelena Bodien, a neuroscientist at Massachusetts General Hospital and Spaulding Rehabilitation Hospital, and her colleagues noticed that many of their patients were exceeding the prognosis their families had originally been given. They compared 80 patients with severe injuries who died after life support was withdrawn, with 80 similar patients whose life support was not withdrawn so early. They found that 42 percent who continued life support recovered enough in the next year to have some degree of independence. A few even returned to their former lives.
42 percent! The understated conclusion was that prognosis is more accurate if there is more of a wait prior to withdrawing life support. What it really means is that 42 percent of those whose lives were ended could have also recovered enough in the next year to have some degree of independence and a few returned to their former lives but instead they are dead.
The results of the study are striking but the study does not really break new ground. Dr. Joseph Fins, an expert in consciousness levels, stated years ago in regard to people who have sustained major brain injuries, “It’s glossing over all the unknowns for the sake of a quicker, cleaner solution. It’s wrong to be so uniformly fatalistic so early on, especially with all the data emerging about the prospects for later-stage recovery.”
Moreover the guidelines from the American Academy of Neurology, reflecting the view that current ICU practice is based on flawed and outdated information, categorically state that when “discussing prognosis with caregivers of patients with a disorder of consciousness during the first 28 days post-injury, clinicians must avoid statements that suggest these patients have a universally poor prognosis.”
Writing in Stat, Dr. Roger Truog, a ethicist and doctor at Boston Children’s Hospital, maintains that adhering even to these modest guidelines would unduly strain family, ICU’s and rehabilitation beds. Rather than acknowledging the error rates, he writes, “most ICU physicians do not believe they are incapable of accurately predicting poor outcomes in the most severe cases.” Truog appears to endorse the “window of opportunity” – or “better dead than disabled” – approach.
What is a poor outcome? The investigators for the study have received pushback from colleagues who do not doubt the results but who say, “If we don’t make a decision early, we might be committing these patients to a life they would not like.”
As usual, it is all about disability, quality of life biases and the belief that disability is a fate worse than death and that people with disabilities are a burden to society.
Is change coming? The update to the 504 Regulations is designed to prevent healthcare providers receiving federal funds from acting on such views but it looks like there will be a steep learning curve at best.
Wow! Woah!