Medical Experts Now Agree that Severely Brain-injured Patients are Often Misdiagnosed and May Recover

People with severe brain injuries from accidents, strokes, illness, etc. are often in comas at first. If they don’t die or spontaneously wake up, they can progress to a “persistent vegetative state” (PVS) described as “awake but unaware” and/or a “minimally conscious state” (MCS) described as definite, but extremely limited, awareness of self or environment, and limited means of communication. People with these conditions have had court battles over removing their feeding tubes such as the 1988 Nancy Cruzan (PVS) and the 2001 Robert Wendland (MCS) right to die” cases.

Now, an August 9, 2018 Medscape article “New Guideline for Minimally Conscious, Vegetative States Released”  reveals that 3 specialty societies including the American Academy of Neurology have just published a new guideline with 15 recommendations for “accurate diagnosis, prognosis and treatment for these conditions”.

The reason for the new guidelines, according to Dr. Joseph Giacino, who was one of the authors of the study, is because:

“Misdiagnosis of  DoC (“disorders of consciousness”) is common because underlying impairments can mask awareness — in fact, there is a 40% rate of misdiagnosis, leading to inappropriate care decisions as well as poor health outcomes.” (Emphasis added)

The 223 page new guideline titled Practice guideline update: Disorders of consciousness” states that:

 “Clinicians should refer patients with DoC (disorders of consciousness) who have achieved medical stability to settings staffed by multidisciplinary rehabilitation teams with specialized training to optimize diagnostic evaluation, prognostication, and subsequent management, including effective medical monitoring and rehabilitative care.”

and

When discussing prognosis with caregivers of patients with DoC (disorders of consciousness) during the first 28 days after injury, avoid statements suggesting that these patents “have a universally poor prognosis”. (All emphasis added)

According to Dr. Giacino, “Approximately 20% of individuals who have disturbance in consciousness from trauma regain functional independence between 2 and 5 years post-injury, even though they may not return to work or pretrauma functioning.” (Emphasis added)

The study also cites the drug amantadine and brain imaging showing that the brain can still respond normally to stimulus even though the person seems unaware as potentially helpful.

What about the “right to die” for these people? Ominously, the guideline does mention 1 study found that hospital mortality was 31.7%, with 70.2% of those deaths associated with the withdrawal of life-sustaining therapy”. (Emphasis added)

IS THE “40% MISDIAGNOSIS” RATE REALLY NEWS?

Doctors like Dr. Keith Andrews of the UK and US doctor Mihai Dimancescu published  medical journal articles  in the 1990s showing that around 40% of patients in a so-called “persistent vegetative state” were misdiagnosed.  And in 1987, the Royal Hospital for Neuro-Disability in the UK opened a “vegetative state” unit and later developed the “Sensory Modality Assessment and Rehabilitation Technique (SMART)” as a clinical tool for the assessment and rehabilitation of people with disorders of consciousness following severe brain injury.

Despite this, most media stories about cases like Terri Schiavo’s and “right to die”/assisted suicide groups continued to insist that “PVS” is a hopeless condition for which everyone should sign a “living will” to ensure that food and water is withheld or withdrawn to “allow” death.

This happened despite articles like the New York Times’ 1982 article “Coming Out of Coma”.  about the unexpected return of consciousness of Sgt. David Mack over a year after the famous “right to die” neurologist Dr. Ron Cranford  predicted ”He will never be aware of his condition nor resume any degree of meaningful voluntary conscious interaction with his family or friends” before. (Emphasis added)

There have also been articles about people like Terry Wallis who in 2003 regained consciousness after 19 years in a “minimally conscious” state. Unfortunately, such cases were often explained away as just “misdiagnosis” or a “miracle”.

MY EXPERIENCE

Just before Drs. Jennet and Plum invented the term “persistent vegetative state” in 1972,  I started working with these many comatose patients as a young ICU nurse. Despite the skepticism of my colleagues, I talked to these patients as if they were awake because I believed it was worth doing it for the patient if hearing is truly the last sense to go. Because of this, I unexpectedly saw some amazing recoveries and one patient later  told me that he would only respond to me at first and refused to respond to the doctor because he was angry when heard the doctor call him a “vegetable” when the doctor assumed the patient was comatose.

Over the years, I’ve written about several other patients like “Jack”, “Katie” and “Chris” in comas or “persistent vegetative states” who regained full or limited consciousness with verbal and physical stimulation. I 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 healing of the brain. Personally, I have only seen one person who did not improve from the so-called “vegetative” state during the approximately two years I saw him.

CONCLUSION

It is good news that the American Academy of Neurology and other groups are finally rethinking their approach to people with severe brain injuries, especially the recommendation to start rehabilitation therapies as soon as the person is medically stable and the recommendation for  periodic and thorough testing over time.

This is crucial because the often quick prognosis of “hopeless” attached to people with severe brain injuries can-and has-led to early withdrawal of feeding tubes and ventilators as well as DCD (donation after cardiac/circulatory death) for these non-brain dead people.

Dr. Joseph Fins MD and chief of Medical Ethics at Weill Cornell Medical College perhaps says it best when he praises the new guideline as “a real step forward for this population that has historically been marginalized and remains vulnerable” and “suggests that brain states are not static, but dynamic, and that people can improve over time”. (Emphasis added)

 

 

 

 

 

The Changing Rules for Organ Donation

BACKGROUND

Whether we are renewing our driver’s licenses, reading the news or watching TV, it’s almost impossible to miss the campaign to persuade us to sign an organ donation card.

But do we really know what we are signing?

While internet organ donor registration sites like Donate Life America and organdonor.gov still maintain that vital organs can only be harvested (the technical term for removal) after brain death (a controversial issue itself ), a whole new category of organ donors initially called NHBD (non-heart beating organ donors) and later changed to DCD (donation after cardiac death) was added in the 1990s.  This new pool of organ donors are patients who are severely brain-injured but not brain dead, on ventilators (breathing machines) and considered hopeless in terms of survival or predicted “quality of life”.

Organs from these patients are taken when families agree to stop the ventilator and allow doctors to take the person to an operating room where the patient’s organs are removed when (or if) the patient’s heartbeat and breathing stops for 2-5 minutes within a 1-2 hour time frame. If the patient does not die within the time frame, the transplant is cancelled because the organs are potentially damaged and the patient is then returned to a room to die without further treatment.

At first, there was some criticism of DCD on legal, medical and ethical grounds, especially after a 1997 segment of the TV show “60 Minutes” exposed the case of a young gunshot victim whose organs were taken by DCD but the medical examiner who conducted the autopsy said he believed the injury was survivable.

Nevertheless, this new kind of organ donation was deemed ethically acceptable in 2000 by the US Institutes of Medicine while unfortunately also finding “opinion is divided on the option of non-heart-beating donation for the patient who is ventilator dependent but conscious and who wants to stop life-sustaining treatment.

As of 2015, DCD comprised 8.9 percent of all transplants in the US but the procedure is still little-known to the public.

THE DEAD DONOR RULE AND IMMINENT DEATH DONATION

In 2016, UNOS (United Network for Organ Sharing), the organization that manages the nation’s organ transplant system under contract with the federal government, issued its decision on Imminent Death Donation, a policy that would take DCD a step farther to become virtual organ donor euthanasia.

Because “a substantial minority” of DCD donors fail to die fast enough in the 1-2 hour time frame for organ donation, UNOS was considering re-framing the issue as “the recovery of a living donor organ immediately prior to an impending and planned withdrawal of ventilator support expected to result in the patient’s death” to ensure better quality organs and avoid an unsuccessful procedure. (Emphasis added)

Not only would this language change DCD donors from dead donors to living donors, but this also effectively destroys the definition of Dead Donor Rule that states:

“The dead donor rule is an ethical norm that has been formulated in at least two ways: (1) organ donors must be dead before procurement of organs begins; (2) organ procurement itself must not cause the death of the donor. (Emphasis in original)

Although living organ donation can be ethical when a healthy person freely decides to donate an organ like one kidney to someone who has lost kidney function, this imminent death donation is entirely different because the donor’s organ is taken before a planned and expected death.

Writing in a 2013 New England Journal of Medicine article “The Dead-Donor Rule and the Future of Organ Donation”, a group of prominent doctors gave this rationale for abandoning the dead donor rule:

“Respect for autonomy requires that people be given choices in the circumstances of their dying, including donating organs. Nonmaleficence requires protecting patients from harm. Accordingly, patients should be permitted to donate vital organs except in circumstances in which doing so would harm them; and they would not be harmed when their death was imminent owing to a decision to stop life support. That patients be dead before their organs are recovered is not a foundational ethical requirement.” (Emphasis added)

The following year, a polling study in the Journal of Medical Ethics concluded that  the American public is “largely in support of organ removal even though it causes death in this scenario.” (Emphasis added)

CONSEQUENCES

Although UNOS ultimately decided to shelve last year’s proposal to approve Imminent Death Donation “because of its potential risks at this time, due to a lack of community support and substantial challenges to implementation”, that decision may only be temporary:

“In the future, it may be possible to adequately address those challenges through additional research or careful policy development or revision.”

However, apparently no bad ethical idea ever really dies when it comes to increasing the number of organs to transplant and now UNOS is currently considering “Living Organ Donation by Persons with Certain Fatal Diseases who Meet the Criteria to be Living Organ Donors”.

Thanks to the disability advocacy group Not Dead Yet (NDY), I was recently alerted to this new  proposed organ donation policy change and read UNOS’ public comment proposal that describes such patients as having “a progressive, incurable, chronic disease that is fatal and will ultimately be terminal” and gives examples like Alzheimer’s and Multiple Sclerosis.

In its statement opposing the policy change, NDY points out:

“Yet the Committee seems to want to create a special subgroup of living donors to whom the normal rules governing living donations do not apply and whose deaths are of less concern than the deaths of other donors because these living donors are presumably anticipated to die soon anyway. The recommendations would promote overt and lethal discrimination between donors based on disability and perceived health status…

One example of the Committee’s biased double standard is while OPTN policy is not to accept persons as living donors if they show evidence of suicidality, it urges an exception for people with certain fatal diseases so as not to preclude people with plans for assisted suicide (where legal) from first undergoing a living organ donation. (pg. 10) Surely, public confidence in the organ procurement system will not be enhanced by any policy proposal that hints toward a future in which organ euthanasia is accepted and promoted.” (Emphasis added)

CONCLUSION

Unfortunately, the short time frame for public comments on this new policy is now closed and UNOS apparently does not send out alerts to the general public. Also, to the detriment of the public, the media tends to publicize feel-good stories about donation rather than explore controversial policies.

Personally, I am for ethical donation of organs and tissues. Years ago, I volunteered to donate a kidney to a friend and our youngest grandson was saved in 2013 by an adult stem cell transplant.

But I do not have an organ donor card nor encourage others to sign one because I believe that standard organ donor cards give too little information for truly informed consent. Instead, my family knows that I am willing to donate tissues like corneas that can be ethically donated after natural death and will only agree to that donation.

The bottom line is that what we don’t know-or allowed to know-can indeed hurt us, especially when it comes to organ donation. We need to demand transparency and information before such policies are quietly implemented.

 

Brain Death: Do We Know Enough?

 

The following is my article published in the National Catholic Bioethics Quarterly (Spring 2016): 55-59. © 2016 The National Catholic Bioethics Center Quarterly.

Abstract. Every year, people make decisions based on trust in the certainty of diagnoses of brain death. These decisions range from signing an organ donation card to withdrawing life support from a loved one. Two recent developments have revived concerns about medical standards for determining brain death. One is a recent study on variability in brain death policies in the United States; the other is the filing of a federal lawsuit to rescind the death certificate of Jahi McMath, a teenager who appears to have survived a 2013 declaration of brain death. The author examines these developments and asks whether trust in the certainty of brain-death determinations is currently warranted.

Nancy Valko, RN, ALNC, is a legal nurse consultant and a spokesperson for the National Association of Prolife Nurses. A registered nurse since 1969, she has worked mostly in critical care as well as hospice, oncology, and home health. She is a past co-chair of the St. Louis Archdiocesan Respect Life Committee. She received the People of Life award from the US Conference of Catholic Bishops in 2015.

—————————————————————————

Two recent developments on the controversial issue of brain death have revived concerns about the medical standards currently used for determining brain death. One was the publication of a JAMA Neurology study of 508 US hospitals, titled “Variability of Brain Death Policies in the United States,” by Dr. David Greer et al., which found major variations in their policies for determining brain death. The study concluded that “hospitals should be encouraged to implement the 2010 AAN [American Academy of Neurology] guidelines to ensure 100% accurate and appropriate determination of brain death.”1

The other development surrounds a federal lawsuit pushing to rescind the death certificate of Jahi McMath. McMath, a teenager from Oakland, California, was declared brain dead two years ago but is apparently still surviving and may be showing some signs of improvement.2

Every year, people make decisions—to withdraw life support from loved ones or to sign organ donation cards—based on trust in the certainty of a diagnosis of brain death. Is such trust warranted?

A Short History of US Brain-Death Policies

Although the concept of irreversible coma was first introduced in 1959, the cur- rent legal and medical concept of brain death gained widespread acceptance after the publication, in 1968, of “A Definition of Irreversible Coma,” the report of the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death.

The stated purpose of the Harvard report was “to define irreversible coma as a new criterion for death,” because new technology such as ventilators could maintain a patient “whose heart continues to beat but whose brain is irreversibly damaged.” The committee noted that “obsolete criteria for the definition of death can lead to controversy in obtaining organs for transplantation.” The Harvard paper laid out four conditions for a diagnosis of brain death: (1) unreceptivity and unresponsitivity, (2) no movement or breathing, (3) no reflexes, and (4) a flat electroencephalogram, providing confirmatory data that should be utilized “when available.”3

Starting in the early 1970s, various state legislatures and courts acted to turn brain death into a legally recognized standard for determining death by loss of all brain function. Patients declared brain dead could then be removed from life support measures, like mechanical ventilation, without legal ramifications or their organs could be harvested while their hearts were still beating and a ventilator kept their lungs functioning.

In 1981, the US Uniform Determination of Death Act formally added “irreversible cessation of all functions of the entire brain, including the brain stem” to the legal definition of death.4 However, while the act set the general legal standard for determining brain death, it did not dictate the medical criteria. Many state laws  just cite “accepted medical standards” for determining brain death. Over the years, efforts were made to standardize these medical criteria, most recently by the AAN guidelines established in 2010.5

Not All Hospitals Comply with the Guidelines

In an interview with Medscape, David Greer, the lead author of the study in JAMA Neurology, expresses concern that not all of the 508 US hospitals surveyed were “100% compliant” with the 2010 guidelines by the American Academy of Neurology. Of the hospitals surveyed, the Medscape article notes that only “about a third of policies (33.1%) required specialist expertise in neurology or neurosurgery, but 150 policies had no mention of who could perform the determination.” 6 The article also notes that not all hospital policies require testing of lower brainstem function to establish the loss of all brain function, and not all comply with other AAN recommendations such as establishing the cause of the brain dysfunction, the absence of effects of specific medications like sedatives, and crucial aspects of the apnea test.

One of the potentially disastrous consequences of these inconsistencies in hospital testing policies is that a person can be treated as a living patient at one hospital but declared brain dead at another.

Would full compliance with the 2010 guidelines “ensure 100% accurate and appropriate determination of brain death”? Probably not, given the findings of the 2010 report updating the AAN guidelines.7 Eelco Wijdicks et al. observe that “many of the details of the clinical neurologic examination to determine brain death can- not be established by evidence-based methods. The detailed brain-death evaluation protocol that follows is intended as a useful tool for clinicians. It must be emphasized that this guidance is opinion-based. Alternative protocols may be equally informative.” They also note that there is “insufficient evidence” to determine such crucial standards as “the minimally acceptable observation period to ensure that neurologic functions have ceased irreversibly,” “the comparative safety of techniques used for apnea testing,” and the accuracy of “newer ancillary tests [in confirming] the cessation of function of the entire brain.”8

The significance of these criteria is highlighted in a 2012 article, “A Survey of American Neurologists about Brain Death: Understanding the Conceptual Basis and Diagnostic Tests for Brain Death,” by Ari Joffe et al.9 The authors note, “It has been shown that some brain functions continue after accurately clinically diagnosed BD (brain death), including EEG activity in 20%, evoked potential activity in 5%, and hypothalamic neuroendocrine function in > 50%. These activities may be explained by the finding that continued brain blood flow occurs in 5–40% of BD patients, and pathologic destruction of brain does not occur in more than 40% of BD patients (even after over 24–48 hr. of maintained circulation).”10 Thus there seems to be reasonable cause for concern whether even 100 percent compliance with AAN guidelines would completely ensure the accuracy of a diagnosis of brain death or the validity of some critical brain-death tests.

Jahi McMath

In December 2013, thirteen-year-old Jahi McMath suffered cardiac arrest after undergoing surgery for sleep apnea at Children’s Hospital Oakland, in California. Although doctors managed to resuscitate her, they declared McMath brain dead and prepared to remove the ventilator. Hoping she might recover, however, the family insisted that it remain in place.

After several court battles, a judge permitted McMath’s family to transfer her to a facility in New Jersey that allowed the continued use of the ventilator. Two years later, McMath’s family is still fighting, suing in federal court have her death certificate rescinded.11 According to the family’s attorneys, “Jahi does not fulfill California’s statutory definition of death, which requires the irreversible absence of all brain function, because she exhibits hypothalamic function and intermittent responsiveness to verbal commands.” 12

A ruling to rescind McMath’s death certificate would have profound implications for the medical and legal determination of brain death, especially since her initial diagnosis was confirmed by multiple doctors in a well-respected hospital.

McMath is not the first person to survive for a prolonged time after a brain- death diagnosis. Alan Shewmon, MD, studied approximately 175 cases of long-term survival after a declaration of brain death, for periods ranging from one week to more than fourteen years.13 In other cases, pregnant women declared brain dead have been able to gestate unborn babies for weeks or months until a healthy delivery.14

Most concerning of all are cases like that of Zach Dunlap, a young man from Oklahoma who was declared brain dead after an all-terrain vehicle accident in 2008. Testing showed no blood flow to his brain, and Dunlap was being considered for organ donation when a relative discovered a physical response from Zach. Four months later and already making plans to return to work, Dunlap appeared on NBC’s Today show, where he told hosts that he heard a doctor say he was dead, and it “just made me mad inside.”15

Alarmingly, there have been other reported “near misses” like Dunlap’s that also did not lead to rigorous medical investigations to determine what went wrong with the initial brain-death determinations. Yet experts continue to maintain that there is “no documented report of patients regaining brain function after being declared brain dead,” although some allow that “maybe mistakes happened and they weren’t reported.”16

Persistent Controversies

Controversy about brain death has simmered for years in bioethical and medical circles. Influential  experts such as Robert Truog and Franklin Miller argue that doctors should drop the rule requiring that people be declared dead before vital organs are taken, and instead merely obtain “valid informed consent for organ donation from patients or surrogates before the withdrawal of life-sustaining treatment in situations of devastating and irreversible neurologic injury.”17

The Catholic Church has been involved in the controversy over brain death since the Harvard report cited Pope Pius XII’s 1957 address “The Prolongation of Life” to support its recommendations.18 Since then, there have been several papal statements and conferences on the determination of brain death. Collectively, these are widely seen to indicate a cautious acceptance of the concept of brain death that is based on the assurance of medical certainty to provide moral certainty.

When the issue is death, medical ethics must be backed up by accurate medical facts. In the case of the legal and medical definition  of brain death as “irreversible cessation of all functions of the entire brain, including the brain stem,”19 medical science, not philosophical speculation, must provide the proof beyond a reasonable doubt.

When cases like those of McMath and Dunlap are routinely dismissed instead of rigorously investigated to establish the facts, medical certainty is not achieved and medical integrity is undermined. In addition, when hospitals set their own standards and policies for determining brain death without external accountability, lives—as well as the essential and necessary trust in the health care system—can and possibly will be lost.

Footnotes:

1. David M. Greer et , “Variability of Brain Death Policies in the United States,” JAMA Neurology 73.2 (February 1, 2016): 213, doi: 10.1001/jamaneurol.2015.3943.3943. The updated AAN guidelines are presented in Eelco F. M. Wijdicks et al., “Evidence-Based Guideline Update: Determining Brain Death in Adults—Report of the Quality Standards Subcommittee of the American Academy of Neurology,” Neurology 74.23 (June 8, 2010): 1911–1918.

2. McMath et v. State of California et al., no. 4:2015cv06042 (N.D. Cal. Dec. 23, 2015); see David DeBolt and Malaika Fraley, “Jahi McMath: Family Sues in Federal Court to Have Brain-Dead Girl Declared Alive,” Mercury News, December 24, 2015, http://www.mercurynews.com/.

3. Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death, “A Definition of Irreversible Coma,” JAMA 6 (August 5, 1968): 337, doi: 10.1001/jama.205.6.337. P. Mollaret and M Goulon identified irreversible coma in their essay “Le Coma Dépassé (memoire preliminaire),” Revue Neurologique 101.1 (July 1959): 3–15.

4.National Conference of Commissioners on Uniform State Laws, Uniform Determination of Death Act, approved 1980/1981, http://www.uniformlaws.org/.

5. Allison Gandey, “New Brain Death Guidelines Issued,” com, June 10, 2010, http://www.medscape.com/.

6. Pauline Anderson, “Not All Hospital Brain Death Policies Comply with Guidelines,” com, December 30, 2015, http://www.medscape.com/, emphasis added.

7. Wijdicks et al , “Evidence-Based Guideline Update.”

8. Ibid. 1911, 1914, emphasis added.

9. Ari Joffe et , “A Survey of American Neurologists about Brain Death: Understanding the Conceptual Basis and Diagnostic Tests for Brain Death,” Annals of Intensive Care 2.1 (February 17, 2012): 1–8, doi: 10.1186/2110-5820-2-4.

10. Ibid, 4

11. DeBolt and Fraley, “Jahi McMath”

12. Winkfield v. Children’s Hospital Oakland, no. RG-15760730, first amended com plaint (CA, Ct. Alameda County, Nov. 4, 2015), para. 36, original emphasis.

13. Alan Shewmon, “Chronic ‘Brain Death’: Meta-Analysis and Conceptual Con- sequences,” Neurology 51.6 (December 1998): 1538–1545.

14. Majid Esmaeilzadeh et , “One Life Ends, Another Begins: Management of a Brain-Dead Pregnant Mother—A Systematic Review,” BMC Medicine 8.74 (November 18, 2010): doi: 10.1186/1741-7015-8-74.

15. Natalie Morales, “‘Dead’ Man Recovering after ATV Accident,” NBC News, March 24, 2008, nbcnews.com/.

16. Pauline Anderson, “Not All Hospital Policies ”

17. Robert Truog and Franklin G. Miller, “The Dead Donor Rule and Organ Transplantation,” New England Journal of Medicine 359.7 (August 14, 2008): 675, doi: 10.1056/NEJMp0804474.

18. Ad Hoc Committee of Harvard Medical School, “Definition of Irreversible Coma,” 88 note 1, citing Pius XII, “The Prolongation of Life,” Address to an International Congress of Anesthesiologists (November 24, 1957), The Pope Speaks 4 (Spring 1958): 393–398.

19. Commissioners on Uniform State Laws, “Uniform Determination of Death Act,” sec 1.

“Everybody’s a Winner When Euthanasia Combines with Organ Donation, Say Doctors”

This excellent article by Michael Cook  titled “Everybody’s a Winner When Euthanasia Combines with Organ Donation, Says Doctors” is a must read for anyone concerned about ethics and healthcare.

Michael Cook, the current editor of Mercatornet, writes that

Several Dutch and Belgian doctors have proposed legal reforms to increase the popularity of combining euthanasia and organ donation in the Netherlands and Belgium.

Writing in the Journal of Medical Ethics, they report valuable unpublished information about the prevalence of the procedure. So far, it has been performed only about 40 times in the two countries. However, there is “a persisting discrepancy between the number of organ donors and the number of patients on the waiting lists for transplantation” – which euthanasia patients could help to balance. (Emphasis added)

Ominously, the authors of this British Medical Journal article  titled “Legal and ethical aspects of organ donation after euthanasia in Belgium and the Netherlands”, write that public perception of this formerly abhorrent practice is increasingly positive:

“transplant coordinators in Belgium and the Netherlands notice a contemporary trend towards an increasing willingness and motivation to undergo euthanasia and to subsequently donate organs as well, supported by the increasing number of publications in popular media on this topic.

and

“In the context of organ donation after euthanasia, the right of self-determination is a paramount ethical and legal aspect. It is the patient’s wish and right to die in a dignified way, and likewise his wish to donate his organs is expressed. Organ donation after euthanasia enables those who do not wish to remain alive to prolong the lives of those who do, and also—compared with ‘classical’ donation after circulatory death—allows many more people to fulfil their wish to donate organs after death.” (Emphasis added)

This slippery slope actually started in 1998 when Jack Kevorkian removed the kidneys of one of his victims and offered them for transplantation. Almost everyone was stunned and horrified. Transplant surgeons refused the organs at that time but the reasons given in some news articles unfortunately had less to do with the ethics than with the concerns over the viability of the organs and the  harvesting technique of the organs themselves.

By 2003, the prestigious journal Critical Care Medicine published an article titled “Role of brain death and the dead-donor rule in the ethics of organ transplantation” by Drs. Robert D. Troug and Walter M. Robinson that went even further:

“We propose that individuals who desire to donate their organs and who are either neurologically devastated or imminently dying should be allowed to donate their organs, without first being declared dead”.  (Emphasis added)

Thus, the actual cause of death would be the organ removal which, in itself, would be euthanasia.

We should not assume that legalized organ donation euthanasia can’t happen here in the US when the public has already been softened up for years by a mostly sympathetic media publicizing sad cases like Brittany Maynard’s and the relentless Compassion and Choices campaign to legalize physician-assisted suicide in every US state.

I can even envision a time when organ donation euthanasia could be presented to the public as merely “medically assisted death-with benefits.”

 

 

A Belated But Wonderful Christmas Present

Last December, I wrote a blog “All I want for Christmas is…a kidney” about Bernie, my daughter-in-law, and her need for a kidney transplant. Last Friday, she received one!

Bernie is doing well and should be home sometime this week. It will be a new life for her and my son Steve without the hours of dialysis, strict dietary restrictions and other limitations. Their faith, hope, patience and acceptance of their situation have been truly inspiring!

Unfortunately, Bernie’s wonderful father Gene Buerke did not live to see this day. He died from a massive stroke 2 weeks ago but we are sure he is celebrating in heaven. Please pray for the repose of his soul as well as Bernie’s speedy recovery.

Thank you all for your prayers and support!

 

Do We Know Enough About Brain Death?

Just last month, there were two major developments reported on the controversial issue of brain death. One was an article about a lawsuit to revoke the death certificate of Jahi McMath, a California teenager who was declared brain dead 2 years ago but is still alive and apparently showing some signs of improvement.

The other was a December 30, 2015 article in Medscape, a website for medical professionals that requires subscription, titled “Not All Hospital Brain Death Policies Comply With Guidelines” . The article reports on a medical journal study titled “Variability of Brain Death Policies in the United States.”

Jahi McMath

Jahi McMath, a 13-year-old girl, underwent a routine surgery for sleep apnea in December 2013 at a California children’s hospital. That night she started bleeding and eventually her heart stopped. Her heart was restarted and she was placed on a ventilator to stabilize her condition, but soon the doctors declared her brain dead and prepared to remove the ventilator. However, the family insisted that the ventilator be continued, hoping that Jahi might eventually get better.

The doctors disagreed, insisting that Jahi was legally dead by brain death criteria. The parents went to court to keep the doctors from removing her ventilator but after a series of legal battles lasting weeks, a judge eventually gave Jahi’s family permission to transfer her to another facility that would continue the ventilator.

Virtually all the ethicists and other experts contacted by most media outlets condemned the family’s actions as denying the reality of brain death. In a January 10, 2014 USA Today article, ethicist Arthur Caplan, head of the bioethics division at New York University’s Langone Medical Center, criticized the judge’s decision for Jahi’s family, declaring that Jahi’s new doctors are “trying to ventilate and otherwise treat a corpse,” Caplan said. “She is going to start to decompose.”

Now, 2 years after Jahi was declared brain dead, her family is in federal court suing to revoke her death certificate because as their experts contend

“At this time, Jahi does not fulfill California’s statutory definition of death, which requires the irreversible absence of all brain function, because she exhibits hypothalamic function and intermittent responsiveness to verbal commands.”

A future ruling revoking Ms. McMath’s death certificate would be groundbreaking.

“Variability of Brain Death Policies in the United States.”

In this December 28, 2013 Journal of the American Medical Association Neurology article, a study was done of 508 US hospital policies on brain death determination.

Alarmingly, the article states that hospital brain death criteria requirements “are not 100% compliant” even with updated 2010 guidelines by the American Academy of Neurology which require only one examination to determine brain death.

And of the total 508 hospitals, the article states that only

“about a third of policies (33.1%) required specialist expertise in neurology or neurosurgery, but 150 policies had no mention of who could perform the determination. Many policies still allow for more junior physicians to determine brain death, the authors noted.” (Emphasis added)

Also disturbing, the article noted that some policies didn’t require testing of lower brainstem function (required for a finding of irreversible loss of all brain functions) with less than 80% of the policies requiring the absence of a cough reflex. Only 57.2% of hospital brain death policies required that oxygen be given to maintain oxygenation during the critical apnea test to determine if a patient can take breaths off a ventilator, even though low a low oxygen level can lead to more brain damage.

In an effort to reassure, Gene Sung, MD, past-president, Neurocritical Care Society, and director, Division of Neurocritical Care and Stroke at UCLA claims that he

agreed that there have there have been no documented reports of regaining function after a declaration of brain death. “But still, we don’t know for sure; maybe mistakes happened and they weren’t reported,” he said. (Emphasis added)

Actually, there have been multiple reported cases of people regaining at least some function after a brain death declaration such as Zach Dunlap (who fully recovered) as well as Jahi McMath.

If as Dr Greer, the lead author of the study, states “This is one of those diagnoses where we need to be correct 100% of the time”, must we not rigorously examine such cases to determine if or why there was a misdiagnosis to ensure that current brain death guidelines really hold up to scrutiny?

Besides the potential premature loss of lives, our medical integrity is at stake and we medical professionals must prove worthy of the trust society gives us.

All I Want For Christmas Is…..A Kidney

All I want for Christmas is a kidney but not for me. I want it for my wonderful daughter-in-law Bernie, short for Bernadette.

Bernie Valko had a kidney transplant when she was 15 years old after a birth complication damaged her kidneys and almost cost her life. For almost 17 years, Bernie did well with her new kidney, went to college and became an occupational therapist.

In September 2012, Bernie was set to marry my son Steve when her transplanted kidney failed the night before their wedding. Bernie told my son that, under the circumstances, they could cancel the wedding. Instead my son said his only regret was not marrying her sooner! No one knew before the wedding except family members. Nevertheless, Steve and Bernie’s wedding was a joyous occasion, although their honeymoon had to be postponed indefinitely.

Three days later, Bernie became very ill and was hospitalized. Dialysis was finally started but difficulties arose. Despite this, Bernie kept working as much as possible. Currently, she has dialysis 3 days a week and works three days a week. As a former dialysis nurse myself, I know that most dialysis patients are unable to work. However, Bernie is a trooper and even volunteers at their St. Louis, Mo. parish.

Bernie desperately needs a transplant. She needs a donor with an O+ blood type for a living donor transplant because such kidneys last almost twice as long and avoid the ethical concerns with other transplants.

Becoming a living kidney donor is not a decision to be made lightly. Information on becoming a living kidney donor is online at http://www.barnesjewish.org/become-a-kidney-transplant-living-donor . Bernie is now at the top of the Barnes Jewish Hospital waiting list.

In the meantime, Bernie and Steve also started a Facebook page “Find a Kidney for Bernie” with pictures and contact information if you or someone you know with an O+ blood type would like to be tested for a living kidney donation to Bernie.

Medical Professionals, Planned Parenthood and Fetal Tissue from Aborted Babies

On August 6, 2015, the Medscape website for medical professionals had an article: “Reader Poll: “Should Medical Societies Support Federal Funding for Planned Parenthood?” with 3 questions:

1. Do you agree that Planned Parenthood should continue to receive federal funds for non-abortion-related care?
2. Do you believe that these 18 medical societies were justified in stating their support for Planned Parenthood?
3. Do you believe that it is ethical for Planned Parenthood to donate aborted fetal tissue for use in medical research?

Not surprisingly, given how these questions are worded, a large majority voted yes.

The Medscape article referenced a letter to Congress dated 8/3/2015 by 18 medical societies supporting continued funding for Planned Parenthood.
However, when I accessed the letter, it surprisingly says nothing about fetal tissue research.

I am including the actual letter and its signers below.

I wonder if these groups’ members feel the same way. I checked on two groups and couldn’t find the letter on the American Congress of Obstetricians and Gynecologists or Society’s for Adolescent Health and Medicine’s websites.

I would encourage members of these groups as well as other ethical doctors and nurses to contact to contact these organizations to encourage them to protest this position (and the use of aborted babies for fetal tissue research), especially since it appears that many medical professionals are unaware of the issues involved.

I have seen this before.

Even though the American Nurses Association did not sign this letter and a current search shows no position on Planned Parenthood or fetal tissue use on its website, I was a member of the American Nurses Association (ANA) years ago and tried to work within that organization at a state level on several ethical issues. I read every issue of ANA’s Journal of Nursing, particularly the political section. When the ban on partial birth abortion came up in Congress, I read nothing about it in the Journal.

Awhile later, I was watching a political talk show and one of the panelists mentioned that the ANA was against the ban. That was news to me so I searched for the information on the internet. It took some time but I finally found the letter.

I tracked down the public relations director of the ANA and called her. At first, she said that she didn’t know what I was talking about but eventually found the information herself and seemed surprised.

I told her that I no longer could be a member of ANA not only because of its’ stance on partial birth abortion but also because of the secrecy. We members were not polled or even informed. I also told her that I would encourage other ANA members to also leave if the ANA did not change its position or inform its membership.

The PR person apologized. I gave her my phone number and encouraged her to have someone from the ANA contact me.

I never heard back from them.

We need accountability from our professional organizations, especially since these organizations claim to represent the interests of groups of medical professionals.

———————————————————————————————————————————————–

In a letter dated August 3, a group of 18 medical societies, including the American Congress of Obstetricians and Gynecologists and the Society for Maternal-Fetal Medicine, ask the Senate and House leadership to continue to allow Planned Parenthood to participate in federal health programs.

https://filemanager.capwiz.com/filemanager/file-mgr/acog/Provider_Ltr_in_Support_of_Planned_Parenthood_Funding_Updated.pdf

August 3, 2015

The Honorable Mitch McConnell
Senate Majority Leader
S-230, U.S. Capitol Building
Washington, DC 20510
The Honorable John Boehner
Speaker of the House of Representatives
H-232, U.S. Capitol Building
Washington, DC 20515
Dear Leader McConnell and Speaker Boehner:

As organizations representing health care professionals and the people they serve across the country, we strongly oppose any effort to prevent Planned Parenthood health centers from participating in federal health programs, including Medicaid and the Title X family planning program. Any proposal to exclude Planned Parenthood from public health programs will severely curtail women’s access to essential health care services, including family planning, well-woman exams, breast and cervical cancers screenings, and HIV testing and counseling. At a time when we should be focused on improving the health of all people, it is frustrating to witness ongoing attempts to cut off access to life-saving preventive care.
Planned Parenthood health centers play a crucial role in improving the health and lives of people across the country. In fact, 2.7 million people rely on Planned Parenthood for health care. For many women, Planned Parenthood is their only source of care—offering basic preventive services that are fundamental to women’s health and well-being. Each year, Planned Parenthood health centers provide nearly 400,000 cervical cancer screenings and nearly 500,000 breast exams.

Additionally, Planned Parenthood provides over 2.1 million contraceptive services and nearly 4.5 million tests and treatments for sexually transmitted infections, including HIV. These services improve women’s health, prevent an estimated 516,000 unintended pregnancies, and decrease infant mortality.
Policies that would exclude Planned Parenthood from public health funding would hurt millions of women and undermine health care access in communities across the country. Approximately 60 percent of Planned Parenthood patients access care through Medicaid and Title X, in addition to those who rely on other essential programs, including maternal and child health programs and Centers for Disease and Prevention (CDC) breast and cervical cancer screening programs.

In some states, Planned Parenthood is the only provider participating in Title X, and more than 50 percent of Planned Parenthood health centers are located in a medically underserved or health professional shortage area. Because federal law already requires health care providers to demonstrate that no federal funds are used for abortion, prohibitions on funding for preventive care at Planned Parenthood health centers will only devastate access to these life-saving services.

Every day, we see the harmful impact that unequal access to health care has on women and communities across the country, and we therefore strongly support policies that improve access to affordable, quality health care. Policies that would deny Planned Parenthood public health funds only serve to cut millions off from critical preventive care, and we strongly oppose any effort to do so. Should you have any questions, please contact ACOG Government Affairs staff, Rachel Gandell at 202-863-2534 or rgandell@acog.org.

Sincerely,

American College of Nurse-Midwives
American Congress of Obstetrician and Gynecologists
American Medical Women’s Association
American Medical Student Association
American Public Health Association
American Society for Reproductive Medicine
Association of Reproductive Health Professionals
Association of Women’s Health, Obstetric and Neonatal Nurses
Doctors for America
GLMA: Health Professionals Advancing LGBT Equality
National Alliance to Advance Adolescent Health
National Association of Nurse Practitioners in Women’s Health
National Family Planning and Reproductive Health Association
National Hispanic Medical Association
National Physicians Alliance
Physicians for Reproductive Health
Society for Adolescent Health and Medicine
Society for Maternal-Fetal Medicine
cc: Senate Minority Leader Harry Reid
House Minority Leader Nancy Pelosi

Killing to Heal? Ethical Problems with DCD (Donation after Circulatory Death)

This first appeared as an item in the Pro-Life Wisconsin Monday Update, 7-13-15. It is a short overview of ethical concerns about DCD (donation after cardiac or circulatory death and formerly called NHBD, non-heart beating donation).

Killing to Heal? Ethical Problems with DCD (Donation after Circulatory Death)

By Nancy Valko, RN, ALNC and Julie Grimstad, Patient Advocate, Prolife Healthcare Alliance

Donation after Circulatory Death (DCD) is ethically controversial because it links the so-called “right to die” with organ donation, opening a terrible Pandora’s Box. In the quest to secure life-saving vital organs, DCD is pushing the boundaries of what constitutes death. Those with the responsibility to determine death are cautioned to take ample time, even in hospice patients, lest death be declared prematurely. When death is hastily declared for the purpose of acquiring organs, as the DCD procedure requires, the paramount ethical principle – the sanctity of human life – can be overridden by utilitarian calculations of whose life is worth more, the organ donor’s or the recipient’s. Consider the following:
1. DCD involves taking organs from patients who have not been determined to be “brain dead” but who are on ventilators and considered hopeless in terms of predicted survival or “quality of life.” U.S. guidelines (from The Organ Procurement and Transplant Network) even allow conscious disabled people on ventilators to agree to the DCD procedure. In spite of the fact that the patient’s or family’s consent to removal of the ventilator must precede consent to organ donation, these guidelines imply that disabled patients’ organs are more valuable than their lives.

2. As noted by reporter David Wahlberg, “…critics, including some Catholic hospitals and the disability rights group Not Dead Yet, say circulatory death donation can pressure families to withdraw life support. Some say drugs given beforehand can hasten death.” [“UW Hospital a leader in alternative to brain death organ donation,” David Wahlberg, Wisconsin State Journal, July 5, 2015]

3. The DCD procedure requires a doctor’s prediction that a person’s heartbeat and breathing will stop within 1-2 hours after the ventilator is removed, but doctors are often wrong. A study presented at the 2015 Transplant Congress by University of Wisconsin doctors stated, “In 46 patients (27.2%) no organs were recovered because the patients did not expire within 2 hours.” Such patients are then just returned to their rooms to die without further treatment. There is something dangerously awry when doctors’ prognoses are so often wrong – fatally wrong.

4. The DCD procedure usually involves moving the patient-donor to an operating room and there removing the ventilator in order to bring about death in a controlled environment. The donor’s organs are taken only 2-5 minutes after breathing and heartbeat stop. Haste saves organs because they rapidly deteriorate without circulation.

5. The basic ethical principle guiding organ donation is the Dead Donor Rule: a person must be dead before the removal of organs for transplantation. Shouldn’t we be absolutely certain a person is dead before organs necessary for life are removed from him/her? What good is the Dead Donor Rule if the “dead” part is fiction?

6. Evidence suggests at least some DCD donors would survive and even recover given time and therapy. For example, NBC’s Today show, September 6, 2011, featured an interview with Shelli Eldredge, a young mother who was comatose after a traumatic brain injury from an accident on June 16, 2011. A doctor recommended stopping life support. Although Shelli’s husband, a doctor himself, also believed it was medically impossible for her to recover, he wouldn’t give up. After a month, Mrs. Eldredge woke up and started speaking. Three months later, she was giving this interview – alert, articulate, and working toward a full recovery.

A civilized society must not allow the deaths of some people to be manipulated in order to obtain organs for others.

Our Grandson Was Saved By An Adult Stem Cell Transplant

Wednesday, July 1, 2015, our 2 year old grandson Liam and his family were featured on the local news by the St. Louis NBC affiliate. The video segment titled “St. Louis family meets life-saving bone marrow donor” is now online at:
http://www.ksdk.com/story/news/local/outreach/2015/06/30/bone-marrow-transplant-donor-reunion/29537057/ and it is wonderful.

It told the basic story about how our 2 year old grandson Liam Bryant, who like his deceased older brother Noah, had a bone marrow transplant for a rare autoimmune disease called HLH and is doing well thanks to the generosity of a stranger named Kevin who donated his bone marrow. There were many tears of joy when Liam and the family were able to meet Kevin in person.

But there is much more to the story.

There are two types of stem cell procedures. Ethically controversial embryonic stem cell (ESC) procedures and non-controversial adult stem cell procedures. ESC procedures are controversial because the cells used are derived from human embryos – babies at a very early stage of development – who are killed in the process. ESC procedures, so far, have not proved to be the breakthrough they were expected to be.

Liam’s transplant came from adult stem cells. Adult stems cells are now proving very useful in the treatment of many diseases thanks to ongoing research, but bone marrow transplants using adult stem cells have been successful for decades.

Liam’s Parents Also Chose Life

The autoimmune disease HLH is notoriously difficult to diagnose and there is only a short window of opportunity to successfully treat the disease with a bone marrow transplant. Liam’s 6 year old brother Noah’s HLH was not diagnosed early and although he fought hard for many months, complications of his bone marrow transplant took his life in October 2012.

While we were all standing vigil for Noah two days before he finally died, Noah’s parents received the difficult news that a special prenatal test showed that Liam, Noah’s unborn brother, also had HLH. The abortion option was brought up. This happened even though little Liam himself would have an excellent chance for a bone marrow transplant cure, especially since his bone marrow transplant could be planned before he showed any sign of the disease.

I was so proud of my stepdaughter when she instantly replied to the abortion “option” with outrage. She told the doctor that it was unthinkable that she would be offered the “choice” of killing one of her children while watching another one of her children die!

The “helpful” doctor who suggested abortion probably thought that she was only being sympathetic, but, like too many people in our society, she saw abortion as an acceptable solution to a tough situation. My stepdaughter enlightened the doctor not only about the truth of abortion as killing but also about the effects on the family. So-called “therapeutic” abortion is never therapeutic for either the child or the family. How can killing a child ever prevent grief and guilt? How can anyone rationalize the very real difference between dying and being killed?

BONE MARROW AND ORGAN DONATION

As I have previously written (see my previous blogs on Non-brain Death Organ donation, Parts one and two), many people are understandably concerned about signing an organ donation card because of the controversies surrounding brain death organ donation and DCD (donation after circulatory death).

However, there are alternatives such as the donation of bone marrow, blood or even a kidney or part of a liver while still alive and healthy. In addition, after death, tissues like bone or corneas can be taken even hours after death is certain.

HOW TO BECOME A BONE MARROW DONOR FOR SOMEONE LIKE OUR GRANDSON

If you or someone you know is between the ages of 18 and 44 and wants to consider being tested for bone marrow donation, you can get more information and join the bone marrow registry at Be The Match at https://bethematch.org/Support-the-Cause/Donate-bone-marrow/Join-the-marrow-registry/

Bone marrow donation can be done by a technique that collects peripheral blood stem cells (PBSC) from the donor’s blood as well as by having bone marrow taken from the hip as Liam’s donor did. An explanation of both donation methods can be found at >https://bethematch.org/transplant-basics/how-marrow-donation-works/steps-of-bone-marrow-or-pbsc-donation/

We will continue to be eternally grateful to Liam’s donor for a true gift of life.

Addendum from the Pro-Life Healthcare Alliance Newsletter July 23, 2015 :

There is a third designation of stem cells that is little known but is gaining momentum: the fetal stem cell. Human beings are called embryos for the first eight weeks after fertilization. After that, we enter the fetal stage, which is from nine weeks post-fertilization until birth. Fetal stem cells are stem cells harvested during the fetal stage of development. Fetal stem cells, often procured from elective abortions, are disingenuously classified as “adult” stem cells simply because they do not come from embryos. Needless to say, this creates great confusion. Be wary. See: https://www.ncregister.com/daily-news/stem-cell-stealth-mode-when-terminology-masks-immorality/