Over the years, I’ve written about several of my patients like “Mike”, “Jack”, Katie” and “Chris” in comas or “persistent vegetative states” who regained full or some consciousness with verbal and physical stimulation. I have also recommended Jane Hoyt’s wonderful 1994 pamphlet “A Gentle Approach-Interacting with a Person who is Semi-Conscious or Presumed in Coma” to help families and others stimulate consciousness. Personally, I have only seen one person who did not improve much from the so-called “vegetative” state during the approximately two years I saw him weekly.
Since then, I have written several blogs on unexpected recoveries from severe brain injuries, most recently the 2018 blog “Medical Experts Now Agree that Severely Brain-injured Patients are Often Misdiagnosed and May Recover” and my 2020 blog “Surprising New Test for Predicting Recovery after Coma.
Now, there is an important new study “New Study: Brain-injured patients who died after life support ended may have recovered”
As the article states:
“Using data gathered over a 7 1/2-year period on 1,392 traumatic brain injury patients in intensive care units at 18 U.S. trauma centers, the researchers designed a mathematical model to calculate the likelihood that life-sustaining treatment would be discontinued. They based their model on demographics, socioeconomic factors and injury characteristics.
Then, they paired patients continuing on life-sustaining treatment to individuals with similar model scores, but for whom life-sustaining treatment was stopped.
Based on follow-up, the estimated six-month outcomes for a significant proportion of the withdrawn group were either death or recovery of at least some independence in daily activities. Of the survivors in the not-withdrawn group, more than 40% recovered at least some independence.” (All emphasis added)”
and
“While many people recover consciousness over a few hours or a day, others remain in the intensive care unit, relying on life support, such as a breathing tube, said Bodien, who also is an assistant professor in the department of physical medicine and rehabilitation at Spaulding Rehabilitation Hospital in Charlestown, Mass.
“Predicting who will recover following severe traumatic brain injury, and to what degree, can be challenging. Yet, families are often asked to make decisions about continuing or withdrawing life support, such as mechanical breathing, within just 72 hours of the injury,” Bodien said.
“This decision is based largely on whether the clinical team believes that recovery is possible,” she added. “It is unknown whether some people who died because life support was discontinued could have survived and recovered had life support been continued.”
Currently, no medical guidelines or precise algorithms determine which patients with severe traumatic brain injury are likely to recover. The most common reason families opt for withdrawing life support measures is physicians relaying information that suggests a poor neurologic prognosis.“
And:
“In the study, researchers found that some patients for whom life support was withdrawn may have survived and recovered some independence a few months after injury. Postponing decisions on withdrawing life support may be helpful for some patients, they noted.” (All emphasis added)
ADVOCATING FOR BRAIN-INJURED PATIENTS
I personally know how important and often difficult it is for healthcare professionals like myself as well as families when doctors recommend withdrawing treatments on a comatose patient.
For example and many years ago, I received a phone call from a distraught fellow nurse living in California. Her sister, “Rose”, was comatose from complications of diabetes and had been in an intensive care unit for three days. Now the doctors were telling the family that Rose’s organs were failing and that she had no chance to survive. The doctors recommended that the ventilator and other treatments be stopped so that she could be “allowed to die”. My nurse friend was uncomfortable with the speed of this recommendation even though the rest of the family was ready to go along with the doctors.
As I told her, back when I was a new nurse in the late 1960s, we would sometimes see patients in the intensive care unit who seemed hopeless and we would speak to families about Do Not Resuscitate (DNR) orders. However, the one thing we didn’t do was to quickly recommend withdrawal of treatment. We gave people the gift of time and only recommended withdrawing treatment that clearly was not helping the person. Some patients did indeed eventually die but we were surprised and humbled when an unexpected number of these “hopeless” patients went on to recover, sometimes completely.
About six weeks after the initial phone call, my nurse friend called back to tell me that the family decided not to withdraw treatment as the doctors recommended and that her sister not only defied the doctors’ prediction of certain death but was now back at work. I asked her what the doctors had to say about all this and she said the doctors termed Rose’s case “a miracle”.
“In other words” she noted wryly, “these docs unfortunately didn’t learn a thing.”
CONCLUSION
In 1983, I personally dealt with a withdrawal of treatment situation like this in my own family when my baby daughter with Down Syndrome and a severe heart defect developed pneumonia was placed on a ventilator. She was unresponsive and critically ill.
We hoped to get her stable enough for her planned heart surgery.
One day, a young resident came in and suggested “getting this over with” by removing her ventilator and “letting her die”. I told him that I would sue if he tried.
I went to the chairman of pediatric cardiology whom I knew well and told him what happened and the chairman said he would fire him. Instead, I suggested that he try to educate the young doctor first but, if he didn’t get the point, then he should be fired.
Karen did eventually die in the ICU on the ventilator but I was comforted by the fact that her death was not unnecessarily hastened as well as the fact that later, this wonderful chairman started the first clinic for people with Down Syndrome in the US to deal with their health issues.
This important study should be mandatory reading for all healthcare professionals and families who need to know the facts.
nancyvalko 