vegetative state

One In Four Brain Injury Patients Who Appear Unresponsive Respond Covertly

nancyvalko assisted suicide, brain injury, culture, disability, education, food and water, futility, medical ethics, vegetative state, ventilators/life support

Back in May, I wrote the blog “New Study: Brain-injured patients who died after life support ended may have recovered” about a 7 1/2 year study of 1392 traumatic brain injury patients in ICU at 18 US trauma centers.

The researchers designed a mathematical model to calculate the likelihood that life-sustaining treatment would be discontinued “based on demographic, socioeconomic factor and injury characteristics” and then “paired patients continuing on life-sustaining treatment to individuals with similar moded scores but for whom life-sustaining treatment was stopped.”

They found that of the survivors who did not have life-sustaining treatment withdrawn, “more than 40% recovered at least some independence.” (Emphasis added)

This led one researcher to conclude that:

““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.” (All emphasis added)

NEW STUDY

Now a newer study, published in August, states that one in Four Brain Injury Patients Who Appear Unresponsive Respond Covertly | MedPage Today, finding that functional MRI and EEG tests can detect awareness in coma or vegetative states.

The authors explain that:

“Cognitive-motor dissociation — a phenomenon that occurs when patients who appear unresponsive perform cognitive tasks that can be detected on functional MRI (fMRI) or electroencephalography (EEG) — occurred in one in four people with severe brain injury, a prospective cohort study found.”

The study evaluated 241 unresponsive patients with brain injury who were given verbal commands, such as to imagine playing tennis or opening and closing their hands.

Of these, 60 patients (25%) repeatedly showed brain activation on fMRI or EEG indicating they were covertly following instructions, reported Nicholas Schiff, MD, of Weill Cornell Medicine in New York City, and co-authors in the 

Cognitive-motor dissociation was associated with younger age, longer time since injury, and brain trauma as an etiologic factor. In total, 11 patients with cognitive-motor dissociation were assessed with fMRI only, 13 were assessed with EEG only, and 36 with both techniques.

“This research shows that a substantial fraction of apparently unresponsive, severely brain-injured persons are aware and can engage in sustained cognitive activity,” Schiff told MedPage Today. These findings importantly point to the need to establish infrastructure to evaluate patients and to begin efforts to test possible therapies to help them.” (All emphasis added)

CONCLUSION

I have worked with brain-injured patients for decades both as a nurse and as a volunteer and I personally saw many amazing recoveries or improvements despite dire predictions and/or recommendations of life support removal.

One of the most amazing cases was a woman with disabilities whose husband wanted to remove life support as the doctors recommended.

As she personally told me, she frantically tried to move her hands to protest but her gestures were seen as seizures and she was given sedatives.

She persisted until finally, one nurse said she might be trying to tell us something and gave her a paper and pencil.

The patient wrote d-i-v-o-r-c-e.

She not only lived but became active in the disability community fighting assisted suicide!

“New Study: Brain-injured patients who died after life support ended may have recovered”

nancyvalko bereavement, brain injury, disability, education, end-of-life, futility, grief, medical, medical ethics, nursing, vegetative state, ventilators/life support

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.

Progress in the War Against Conscience Rights

nancyvalko abortion, AMA, ANA, assisted suicide, brain injury, civil rights, Compassion & Choices, conscience rights, culture, education, end-of-life, euthanasia, food and water, futility, law, medical, medical ethics, nursing, Planned Parenthood, pro-life, vegetative state

As I wrote in my 2016 blog “Conscientious Objection, Conscience Rights and Workplace Discrimination” :

The tragic cases of Nancy Cruzan and Christine Busalacchi , young Missouri women who were claimed to be in a “persistent vegetative state” and starved and dehydrated to death, outraged those of us in Missouri Nurses for Life and we took action.

Besides educating people about severe brain damage, treatment, cases of recovery and the radical change in medical ethics that could lead to the legalization of euthanasia, we also fought for healthcare providers’ rights against workplace discrimination for refusing to participate in deliberate death decisions. We talked to nurses who were threatened with termination.

Although Missouri had some protections against forcing participating in abortion, there were no statutes we could find where health care providers were protected against being forced to participate in deliberate death decisions. We were also told by some legislators that our chance of success was almost nil.

Nevertheless, we persisted and after years of work and enduring legislators watering down our original proposal to include lethal overdoses and strong penalties, Missouri Revised Statutes, Section 404.872.1 was finally signed into law in 1992. It states:

Refusal to honor health care decision, discrimination prohibited, when.

404.872. No physician, nurse, or other individual who is a health care provider or an employee of a health care facility shall be discharged or otherwise discriminated against in his employment or employment application for refusing to honor a health care decision withholding or withdrawing life-sustaining treatment if such refusal is based upon the individual’s religious beliefs, or sincerely held moral convictions.

(L. 1992 S.B. 573 & 634 § 7)

PROGRESS DURING THE TRUMP ADMINISTRATION

In 2018, the Trump administration announced a new Conscience and Religious Freedom Division  in the department of Health and Human Services’ Office for Civil Rights (OCR) to enforce “federal laws that protect conscience and the free exercise of religion and prohibit coercion and discrimination in health and human services”. The division specifically mentions “issues such as abortion and assisted suicide (among others) in HHS-funded or conducted programs and activities” and includes a link to file a conscience or religious freedom complaint “if you feel a health care provider or government agency coerced or discriminated against you (or someone else) unlawfully”.

Both Planned Parenthood (abortion) and Compassion and Choices (assisted suicide) loudly condemned this.

Lawsuits were quickly filed by groups like Americans United for Separation of Church and State and the Center for Reproductive Rights, delaying implementation of the Final Conscience Rule until at least late November. The first lawsuit was filed by San Francisco within hours of the announcement of the Rule.

NOW STATES ARE GETTING INVOLVED

In 2020, the Medical Conscience Rights Initiative (MCRI)  was launched by the Religious Freedom Institute, Alliance Defending Freedom and the Christ Medicus Foundation to promote legislation on the state level “to protect America’s healthcare providers from mandates to perform voluntary procedures in violation of their conscience (e.g., abortion, physician assisted suicide, gender transition surgery, etc.).”

Now five states-Arkansas, Ohio, South Carolina, Florida and now Montana– have enacted versions of this model legislation while “similar efforts are ongoing in multiple other states.”

CONCLUSION

Conscience rights are a necessity, especially since as Dr. Donna Harrison, director of the American Association of Pro-Life Obstetricians and Gynecologists (AAPLOG) makes the crucial point that:

 “Those who oppose the HHS Conscience Rule demonstrate their clear intention to squeeze out of the medical profession any doctor who still abides by the Hippocratic Oath, and to squelch any opposition to forcing doctors to kill human beings at the beginning and end of life.” (Emphasis added)

Disturbingly, as a 2021 paper “Teaching the Holocaust in Nursing Schools: The Perspective of the Victims and Survivors” points out: “the majority of nursing and medical schools do not include Holocaust and genocide studies in their curriculum“, unlike years ago when it was included as an essential part of medical ethics education.

The results are frightening, as I wrote in a 2019 blog “How Could This Happen? Ohio Doctor Accused of Murder in 25 Patient Overdose Deaths”. The doctor was eventually acquitted of murder after “Husel’s defense team, led by high-profile attorney Jose Baez, argued that no maximum doses of fentanyl are considered illegal under state law and that his client was trying to give comfort care to people who were dying or near death.” (Emphasis added)

 Today, both the American Medical Association and American Nurses Association champion “abortion rights” and have dropped their total opposition to medically assisted suicide.

Without conscience rights and whistleblower protections, our health care system can not only become unethical but also downright dangerous to both healthcare providers and patients.

AN INCREDIBLE STORY OF RECOVERY AND HOPE

nancyvalko brain injury, courage, disability, faith, futility, inspiration, medical, medical ethics, mental health, pro-life, vegetative state

I was watching ESPN’s Sports Center show with my husband when I commented on the smart female sportscaster Victoria Arlen who held her own with the male sportscasters. Then my husband told me she had an amazing story and I had to check it out for myself.

A LIFE-CHANGING ILLNESS

When she was 11 in 2006, Victoria Arlen developed two rare conditions: Transverse Myelitis (“a neurological disorder caused by inflammation of the spinal cord”) and Acute Disseminated Encephalomyelitis (” a neurological, immune-mediated disorder in which widespread inflammation of the central nervous system (brain and spinal cord) damages tissue known as white matter”) . 

According to her website, she quickly lost the ability to speak, eat, walk and move and slipped into a “vegetative state”. The doctors thought she was a lost cause. “Victoria spent nearly four years “locked” inside her own body completely aware of what was going on just unable to move or communicate.”

But she didn’t give up.

Amazingly, she was able to improve and according to the May 10, 2023 issue of People magazine:

“After winning gold at the 2012 Paralympic Games and getting a job as one of the youngest reporters at ESPN, she spent year in physical therapy relearning to walk (something doctors thought she’d never be able to do)— and then dance, placing fifth on Dancing with the Stars in 2017.

By all accounts, Arlen had seemed to triumph over her tragedy.

THE RELAPSE

But on March 17, 2022, Victoria had a relapse-her worst fear.

But because her relapse of just the transverse myelitis was recognized early, doctors were able to treat her and prevent lasting paralysis. But her recovery was “grueling”, learning to sit up and take steps again with daily rehab.

She said ” I needed to prove to myself that I was going to be okay” and “”I keep believing in miracles I choose to have faith that I’m going to be okay, and I choose to have hope that things are going to continue to get better,

She continued to have nerve pain but is now back at ESPN’s Sports Center and says, ” “I’ve been given another second chance, and I make a conscious effort now more than ever to appreciate every single moment,” she says. “Because in the blink of an eye, it can be taken away.”

Her webpage reveals that:

“Victoria is also the Founder and Co- Chair of Victoria’s Victory Foundation, a nonprofit that assists those with mobility related disabilities. Since 2017, VVF over provided half a million dollars in scholarship funds to those who need it most.

Victoria’s book titled Locked In hit stores worldwide in August of 2018 as well as her 30 for 30 titled Locked In, that Victoria narrated and produced. Victoria continues to share her story on various speaking tours throughout the world.”

CONCLUSION

Ms. Arlen ends her story with an inspirational message that should touch all of us-especially healthcare providers:

“Heroes in real life don’t wear masks and capes. Sometimes they don’t stand out at all. But real heroes can save a life or many lives just by answering the call in their heart. In the darkest period of my life, when I couldn’t help myself, my heroes were there. … Sometimes we just need someone to lean over and whisper, ‘You can do it!‘ (Emphasis added)