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 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)

Fast Forward to Today

In 2016, we face groups like Compassion and Choices that have pushed assisted suicide legislation through in some states and hoping for an eventual sweeping Supreme Court decision making assisted suicide a constitutional right like abortion.

Some European countries like Belgium and Holland have virtual euthanasia on demand for even non-terminally ill people of any age. In Canada, their Supreme Court has forced assisted suicide on that country and now the province of Quebec has lethal injection kits available to any doctor.

Not surprisingly, conscience/workplace rights for health care providers are being vigorously fought both in those countries and here in the US.

For example, Compassion and Choices’ Barbara Coombs Lee, one of the architects of Oregon’s assisted suicide law, claims that strong conscience-right protections encourage “workers to exercise their idiosyncratic convictions at the expense of patient care” at the end of life.

Hope on the Horizon?

In May, a hospital in Poland stopped performing abortions after every single doctor signed a pledge refusing to do them.

Now, several hospitals in Santa Barbara  and Palm Springs as well as Providence medical centers are opting out of the new California assisted suicide law.

Personally, I believe that if people are given a choice when they are sick, they would naturally prefer a hospital that is committed to care rather than assisted suicide.

Thus, conscientious objection, workplace discrimination/conscience rights laws and the power of institutions dedicated to ethical health care can help turn the tide against assisted suicide laws or at least save some lives and mitigate some of the damage caused by assisted suicide laws. It may take a long time before killing sick or disabled people is again seen as abhorrent and unethical but the effort will be worth it.

As I have said before, “NO!” is a powerful and potentially lifesaving word.

 

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.

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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.

Caring for Difficult People

As nurses, we have the privilege to get to know and help all kinds of people we might never have had a chance to meet otherwise on a very personal basis. Sometimes we care for them during some of the most stressful times in their lives.

Doctors and nurses are supposed to treat everyone according to the highest medical and ethical standards without regard to race, gender, socioeconomic status, nationality, etc. but, like everyone else, we can find some individuals particularly difficult.

One incident that changed my perspective on caring for difficult people happened many years ago when I was a young nurse.

I used to pride myself on keeping my cool in any tense situation until the day I almost lost it with a difficult patient.

A young man with drug addiction was admitted to our floor and he incessantly and loudly demanded more pain medication from all his doctors and nurses. No one could reason with him.

Then one day, he came up to me and screamed in my face. I couldn’t calm him and, despite my best intentions, I could feel my anger rise and my face turn red.

Suddenly, an unexpected thought flashed through my mind: “This is the face of Jesus!” At that moment, I was looking directly into this young man’s eyes and I felt a wave of empathy.

Although I did not say a word, the young man’s face suddenly changed and he stepped back almost as if he had been struck. He stopped yelling and started talking. In the end, he actually apologized for his behavior and admitted that he needed help. He was never verbally abusive to any of us after that.

I was stunned by this remarkable change and it changed my perspective. As I tell younger nurses now, it is usually easy to care for pleasant people but it is the difficult ones that need us the most and who often can teach us how to really respect every life.

Perhaps there is a lesson here not just for nurses but for everyone in this current climate of anger and division in our society: When we respect and recognize the intrinsic value in every human being, we really do have a chance to achieve a more just and peaceful society.

A Surprise Wedding Present

As most of you know, my daughter Marie died by suicide in 2009. I believe in an all merciful God who loves my daughter even more than I ever could. I trust in Him and I know that my Marie is with Him.

However, I knew that our whole family and especially Marie’s little sister Joy would especially miss her when Joy was planning her wedding this year.

I don’t usually pray for something personal except for help with more wisdom, patience, etc. but  Joy and Marie were especially close and Joy had been Marie’s maid of honor in 2005. The two of them even lived together for the last few months of Marie’s life.

When Joy was younger, the three of us would often talk about Joy’s possible future wedding  and Marie would tease Joy about probably becoming a” bridezilla”. Marie promised that she would personally keep her little sister in line if that happened.

So I knew that there could be a shadow over Joy’s happiness at her wedding and I prayed for a sign that Marie was at peace.

However, I was totally stunned when, the week before Joy’s wedding, a package came from Kentucky with a carefully wrapped, thirty year old letter inside. The package was from  Marie’s older but then close friend Stephanie who had moved away in 1983.

Stephanie wrote that she just happened to find a letter Marie had written to her at age 7 and had to send it to me. The letter was even typewritten! Who knew that Marie could figure out a typewriter?

The letter contained a lot of spelling mistakes but it was hilarious to read Marie’s description of her life at age 7. Marie even wrote down each family member’s age which told us how old she was at the time. (See photo: Marie’s letter at age 7 to Stephanie)

Marie wrote about how her older brother was nice and mean sometimes. Marie also wrote about her little sister Joy and how she ate a “dede” bug. All I could do was smile.

What a wonderful wedding present for Joy and all of us!  At the wedding, we all felt that Marie was there and celebrating with us.

As my late mother often used to say, “God is good!”

Here is the proof:

Joy and Chris wedding pic favorite

Joy and Chris May 21, 2016

 

Canada and Assisted Suicide for Psychiatric Patients

My first husband and the father of my children was a caring man and dedicated psychiatrist who himself eventually became disabled by mental illness. Early in our marriage, I helped him write his medical journal articles and we planned to eventually include me in his psychiatric practice to work with the families of his patients. As a nurse, I always believed that families were ideally the best support system for patients and our goal was to improve the care and outcomes of people with mental illness.

Tragically, my husband’s mental illness worsened despite intensive treatment. He ultimately abandoned our family and lived the next 26 years in and out of hospitals and assisted living places before he died of natural causes in 2014.

Thus I have a unique perspective on the legal, medical and personal aspects of mental illness.

At one point, a family member sympathetically suggested that it might be better for everyone if he committed suicide. I was horrified. You don’t give up on sick people and I told this person that I would do anything in my power to stop him if he tried to kill himself. Suicide would be the ultimate tragedy.

Canada and Its New Assisted Suicide Law

In February 2015, the Canadian Supreme Court ruled unanimously in the Carter v. Canada case to legalize physician-assisted suicide for competent, consenting adults whose suffering is due to a “grievous and irremediable” medical condition and gave Parliament a year to develop a regulatory regime along these “parameters.”

The Parliamentary Special Joint Committee on Physician-Assisted “Dying” suggested that the “grievous and irremediable” criterion includes nonterminal medical conditions, including psychiatric disorders.

The federal government’s Bill C-14, on the other hand, defined “grievous and irremediable” as an “advanced state of irreversible decline in capabilities” in a person for whom “natural death has become reasonably foreseeable.”  The Senate ultimately passed the bill but the controversy about assisted suicide for psychiatric patients is still raging.

In a June 21, 2016 commentary in the Canadian Medical Association Journal “Should assisted dying for psychiatric disorders be legalized in Canada?”, authors Scott Y.H. Kim MD PhD and Trudo Lemmens LLM DCL warn against this.

As they note:

In Belgium and the Netherlands, medical assistance in dying has been provided to people with chronic schizophrenia, posttraumatic stress disorder, severe eating disorders, autism, personality disorders and even prolonged grief.

The authors conclude that:

Because of the necessarily broad criteria used to regulate assisted dying (in Canada), legalizing the practice for psychiatric conditions will likely place already vulnerable patients at risk of premature death.

However, others like Belgium psychiatrist Joris Vandenberghe, MD, PhD disagree:

“I think the current approach taken by the Canadian government is a bit too strict because it doesn’t fully recognize the enormous impact that psychiatric disorders can have on patients,” Dr Vandenberghe told Medscape Medical News. (Emphasis added)

However, even Dr. Vandenberghe recognizes the problems while still calling for more “safeguards”:

“I am generally not opposed to our euthanasia legislation and agree that patients suffering from psychiatric conditions should not be excluded from our legislation. However, extra precautions are urgently needed.

“I’m not happy with the way things work here [in Belgium]. Sometimes euthanasia is used with insufficient reluctance on the part of the healthcare professionals involved. We’re missing opportunities for treatment, and we need more safeguards,” said Dr. Vandenberghe.

So for me, the answer lies in a thorough evaluation of a patient prior to euthanasia. There really is no time pressure in psychiatric disorders, and if you have a multidisciplinary committee involved in the evaluation, you can take care of lot of the concerns we now have about euthanasia in the setting of psychiatric illness.”

The reality is that very few psychological or psychiatric referrals are even now made for anyone considering assisted suicide either in the US or in Europe. The answer is not more “safeguards” for assisted suicide practitioners to disregard while enjoying virtual legal immunity but rather an emphatic “No!” from the public as well the legal and medical systems. We also need an unbiased media to publicly expose the real facts about legalized medical killing.

 Conclusion

I have seen both the legal and medical systems often fail people with mental illness like my ex-husband who desperately need treatment and safety.

On the medical side, I begged for direction from my ex-husband’s doctors about what I could do to help him but I was told that there was nothing I could do or not do since the doctors were seeing him regularly. I was not allowed to even know his diagnosis without his permission.

On the legal side, I had problems getting supervised visitation even after a hostage situation.  Due to almost constant harassment, I had multiple orders of protection violated without adequate legal response. And despite being on mental illness disability, my ex-husband was allowed to file and lose several frivolous lawsuits-until he ran out of money.

It was a heartbreaking situation.

However, I always hoped that my ex-husband would improve so that he could at least have a better relationship with his children. Even though that did not happen, I am grateful that he did not die by suicide, assisted or otherwise.

Unfortunately, my family’s experience is not unique among families with a member who is mentally ill.

If our medical and legal systems are already often failing people with mental illness and their families, how can we allow them the power to “assist” our loved ones’ suicide?

That would be the ultimate betrayal of an already stigmatized and vulnerable group of people.