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Women for Faith and Family has published Voices magazine until 2014, the 30th anniversary of Women for Faith and Family.

I have been privileged to be a contributing editor for this magazine. It has been one of the best experiences of my life.

Women for Faith and Family was kind enough to start a webpage for me with my articles, interviews, etc. and I am preserving these articles on this website.

I have two blogsites, the one here is for my older articles from my Women for Faith and Family webpage titled “Nancy Valko” up to 2014 and one titled “Nancy Valko-A Nurse’s Perspective on Life, Healthcare and Ethics” at www.nancyvalko.com for blogs since June, 2015. Please feel free to visit both sites.

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Death and the Organ Donor -Eastertide 2009

Death and the Organ Donor

by Nancy Valko, RN

In the early 1970s, I was a young nurse working with many trauma victims in a state-of-the-art intensive care unit and I loved it. Because of the high number of young accident victims, I was also often involved with organ donation from patients diagnosed as brain-dead. Asking shocked and grieving relatives about organ donation was the hardest part of my work.

Back then, “brain death” was a new legal and ethical concept stemming from an influential 1968 Harvard medical school committee paper titled “A Definition of Irreversible Coma”, which concluded that severely brain-injured patients who met certain criteria could be pronounced dead before the heart stops beating. Starting in the early 1970s, various state legislatures and courts acted to turn this “medical consensus” into a legally recognized standard for determining death by loss of all brain function. Patients declared “brain-dead” then could have their organs harvested while their hearts were still beating and a ventilator kept their lungs going. The brain death concept virtually created the modern transplant system because waiting to take organs until breathing and heartbeat naturally stopped usually resulted in unusable, damaged vital organs.

Like most people, I didn’t know the history of brain death back then and despite the tragic circumstances of my “brain- dead” patients, I was excited by the opportunity to participate in turning tragedy into the “gift of life”.

Over time, however, I developed some nagging concerns about the brain-death concept and I shared them with our intensive care doctors. I was told, as one doctor put it, “Nancy, greater minds than yours have already figured this all out so don’t worry about it.” It took me years to realize that this meant these doctors didn’t know the answers either.

Death and Choice
Unknown to most people, controversy about brain death has simmered for years in the bioethics community. Some well-known physicians, for example, Alan Shewmon and Paul Byrne, argue that the current brain-death standard does not reflect true death. Others, such as Dr. Ron Cranford and ethicist Robert Veatch, argue that the brain-death standard should be stretched to include so-called “persistent vegetative” patients, further expanding the pool of potential organ donors.

Last August the bioethics world was rocked by an article by Drs. Robert Truog and Franklin G. Miller in the prestigious New England Journal of Medicine that made the shocking assertion that many organ donors were not really dead at the time their vital organs were harvested.1 This Harvard doctor and this National Institutes of Health bioethicist then proposed the radical idea that doctors should drop the rule requiring that people be declared dead before vital organs are taken in favor of merely “obtaining 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”. This, in Truog’s and Miller’s opinion, would preserve the current transplant system and still be acceptable to the public because “issues related to respect for valid consent and the degree of neurologic injury may be more important to the public than concerns about whether the patient is already dead at the time organs are removed.”

Perhaps as a result of articles like this, the President’s Council on Bioethics decided to explore the determination-of- death issues involved in organ transplantation. In January 2009, the Council published “Controversies in the Determination of Death: A White Paper”.2 Many of the report’s consensus conclusions were surprising and controversial themselves.

The President’s Council on Bioethics White Paper
The President’s Council on Bioethics white paper on the determinations of death made several startling admissions, including finding that some of the most fundamental rationales for brain death were wrong. The Council, citing scientific studies and observations, admitted that the brain is apparently not the central organizing agent without which the body cannot function for more than a short period of time. Years ago, many of us questioned why some supposedly brain-dead pregnant women could be maintained on ventilators — for even up to a couple of months in some cases — in order to help their unborn children develop and survive birth. Others observed that some supposedly brain- dead children could actually grow and even sexually mature if maintained on life support. It turns out that we were right to question this allegedly settled matter.

The Council also had to admit the little-known fact that brain-death tests vary widely from institution to institution, potentially leading to people who could be declared brain-dead at one hospital but at a different hospital still be considered alive. Personally, I was disappointed that the Council’s paper did not even mention instances like the recent Zach Dunlap case, in which every supposedly definitive brain-death test was done, but a last-minute response by Zach stopped the impending organ donation and Zach even recovered.3

But in the consensus opinion of the Council members, apparently the concept of brain death is just too big to fail. Accordingly, some members of the Council proposed that the term “brain death” be replaced with the term “total brain failure”. And with the new term, these members created a new justification for harvesting the organs of people declared to have this condition. According to this redefinition, the brain is important not because it controls physiological processes, but because these processes represent “engagement with the world”.

This “engagement with the world” takes three forms: openness to the world, an ability to act on the world, and the need to do so. These abstract requirements can be met by something as basic as breathing but they are not met by physiological activities that continue in people who have allegedly lost all neurological function. This, the Council members insisted, is enough to spare breathing, brain-injured people like Terri Schiavo from a diagnosis of “total brain failure”. Ironically though, this assertion does not protect people like Terri from having vital organs removed during the time when they are initially placed on a ventilator because doctors can then use another, newer determination of death called “donation after cardiac death” or DCD (formerly known as “non-heartbeating organ donation” or NHBD).4 The Council’s white paper also addresses this type of death determination and, in the process, makes more startling admissions.

DCD/NHBD was developed in the early 1990s to promote a newer standard of determining death for the purpose of organ donation. DCD/NHBD describes a procedure in which a person is declared hopelessly brain-injured or ill but not brain-dead and, with the consent of the patient or surrogates (or potentially even a “living will”-style document), has his or her ventilator removed with the expectation that breathing and heartbeat will stop within about 1 hour. When the heartbeat and breathing stop for usually about 2 to 5 minutes, the person is declared dead and the organs are taken for transplant. If the person’s heartbeat and breathing do not stop within the allotted time, the transplant is called off and the person is left to die without further treatment.

The Council’s white paper admitted that the legal definition of irreversible cessation of heartbeat and breathing used to justify DCD/NHBD has problems. Most people would consider “irreversible” in this context to mean that the heart has lost the ability to beat. But in DCD/NHBD, “irreversible” instead means that there is a deliberate decision not to try to restart the heart when it stops and that enough time has elapsed to ensure that the heart will not resume beating on its own. However the Council had to admit the dearth of scientific evidence supporting this determination. In some cases involving babies, for instance, the heart is harvested and actually restarted in another baby.

The Council also admitted that even fully conscious but spinal-cord-injured patients have become DCD/NHBD donors when dependent on a ventilator. This sad fact is the result of virtually all withdrawal-of-treatment decisions now being considered legal and thus ethical.

The Council also noted that even though doctors are advised to take their time determining death when a natural death occurs, the interval between declaring death and starting transplantation in a DCD/NHBD patient has been as short as 75 seconds. It seems obvious that the push for a speedy declaration of death is not about new scientific information determining the moment of death but rather a desire to quickly get organs because “[t]he longer a patient removed from ventilation ‘lingers’ before expiring, the more likely are the organs destined for transplantation to be damaged by warm ischemia [lack of adequate blood flow]”.5 But even while expressing concerns, the Council still supported the DCD/NHBD concept in the end.

Despite pages discussing these DCD/NHBD issues, the Council unfortunately ignored a most crucial issue: How do doctors determine who is a “hopeless enough” patient with functioning vital organs and who will also die fast enough to get usable organs? The Council never mentioned articles like the one in the September/October 2008 issue of the Journal of Intensive Care Medicine, which stated “Donation failure [patients who don’t die fast enough to have usable organs] has been reported in at least 20% of patients enrolled in DCD”. Those authors also concluded that “There is little evidence to support that the DCD practice complies with the dead donor rule”.6

We Are All Affected
While organ donation is a worthy goal when conducted ethically, it is very dangerous when physicians and ethicists redefine terms and devise new rationales without the knowledge or input of others, especially the public. This has been happening far too often and far too long in many areas of medical ethics and the consequences are often lethal.

Opinions about medical ethics affect all of us and our loved ones. And good medical ethics decisions are the foundation of a trustworthy medical system. We are constantly exhorted to sign organ-donor cards and join state organ registries but are we getting enough accurate information to give our truly informed consent? This question is too important to just leave to the self-described experts.


Notes

1 “The Dead Donor Rule and Organ Transplantation”, R. D. Truog and F. G. Miller. New England Journal of Medicine, August 14, 2008.

2 Controversies in the Determination of Death: A White Paper by the President’s Council on Bioethics, The President’s Council on Bioethics. Washington, DC: January 2009. Available online at: www.bioethics.gov/reports/death/index.html.

3 “Was Zach Dunlap’s Recovery a Miracle?”, Nancy Valko, RN. Voices Vol. XXIII, No. 2, Pentecost 2008. Available online at www.wf-f.org/08-2-Valko.html.

4 “Non-heart beating organ donation and the vegetative state”, George Isajiw, MD and Nancy Valko, RN. March 2004. Available online at www.wf-f.org/NHBD-VatMar2004.html

5 Controversies in the Determination of Death: A White Paper by the President’s Council on Bioethics, page 82.

6 “Organ Procurement after Cardiocirculatory Death: A Critical Analysis”, Mohamed Y. Rady, MD, PhD, Joseph L. Verheijde, PhD, MBA, and Joan McGregor, PhD. Journal of Intensive Care Medicine. September/October 2008, available online at http://jic.sagepub.com/cgi/reprint/23/5/303.pdf.


Nancy Valko, a registered nurse from St. Louis, is president of Missouri Nurses for Life, a spokesperson for the National Association of Pro-Life Nurses and a Voices contributing editor.


Katie’s Story- Voices Online Edition Lent-Easter 2002

Autor’s note: The following was published in the November, 2001 issue of the New York State Nurses for Life’s newsletter.

Eileen Doyle, RN, president of New York Nurses, is one of my favorite people as well as a tremendous resource for me. I had called her about reprinting the pamphlet mentioned in the article and during our conversation, I told her Katie’s story. She asked me to write it up but, as I told her, I was not writing articles for awhile in order to help with my dying Aunt Jane.

But one night, I woke up at 3 am and felt compelled to write this story. I didn’t know why I felt such an urgency. It was as if something or Someone wanted it written right then.

I sent the story to Eileen the next day and she e-mailed me back that it was just in time for the next newsletter.

Four days later, the planes flew into the World Trade Center.

I am so grateful to have been able to contribute something — anything — to such a fine organization, especially at such a time of crisis.

KATIE’S STORY

In over 30 years of being a nurse, I’ve seen many amazing recoveries. But none were as gratifying as that of a woman I will call “Katie”.

I was working in an oncology unit when we were notified that we would be receiving an 84-year-old woman who was comatose from a massive CVA (stroke). Due to unusual circumstances, she was a permanent resident at our acute care hospital but the orthopedic unit where she stayed was being remodeled and we had an empty bed.

When Katie had her stroke, the doctors soon felt it was a terminal event and recommended to her out-of-town family that she just be allowed to die. IVs were stopped and Katie appeared to be in a coma. She wound up in the orthopedic unit to die. But one nurse told the doctor that Katie would open her eyes if “ice cream” was shouted into her ear and begged the doctor to at least give her IV fluids for awhile. The doctor reluctantly agreed and allowed a peripheral IV with a protein solution we called “TPN lite”. The IV could not sustain her indefinitely but it was something at least.

When Katie came to us, I was told by the off-going nurse that Katie was indeed totally unresponsive and I was warned that no one wanted to hear me say that she wasn’t. You see, for many years, both in ICU and this unit, I had been an advocate of talking to comatose patients and many of them unexpectedly “woke up” or improved. I was often teased about this and, after one incident, a fellow nurse half-seriously asked if I was a witch. Of course I wasn’t; I’m a practicing Catholic. I just believed that hearing was probably the last sense to leave a person and so I always talked to apparently comatose patients as if they were awake. I was surprised myself when many such patients eventually started to respond. Some even made a full recovery.

When I first met Katie, she did indeed seem unresponsive. But when I turned her to wash her back, I felt a slight resistance from her. I told the other nurses that I felt there was some consciousness there but they just laughed. But I felt it also helped preserve her dignity to be treated as if she could hear everything.

Katie was incontinent of stool constantly so we nurses were cleaning her up several times a shift. Some of the nurses resented that we had to spend such a large amount of time with a high-care patient as well as care for our very ill cancer patients..

Then something amazing happened. Within a few weeks Katie started to respond and even to speak.

At first, she just would just mutter nonsense but she would look at us when we spoke to her. The other nurses were delighted with this progress and soon Katie became our unit’s “project”. The IVs were getting harder and harder to maintain with time, so an order was received that we could try to feed her by mouth. It turned out she was really hungry and soon the IVs were stopped completely.

Katie was still confused but she was obviously responding to us. She seemed to plateau indefinitely at that stage when I got the idea of getting her a doll. I had heard that such doll therapy had helped some Alzheimer’s patients and I thought “Why not try it on a stroke patient?”

My daughters contributed one of their soft, washable dolls and Katie’s progress escalated and she became less confused. She clutched the doll constantly. We nurses couldn’t wait until her doctor saw her.

It was a couple of months after we received Katie before her medical doctor came by. I was told by the other nurses that his response after seeing Katie was “Well, ladies, I don’t think you did her any favors”. The nurses were disheartened and wondered how he could say that. I said that he was obviously a bit biased because she was still 84 years old and didn’t have a job. I said we would just have to work harder with Katie.

And thus began a kind of “charm school” for Katie. We nurses demanded that she say “please” and “thank you” appropriately and two nurses worked on teaching her how to flirt. Katie’s confusion was eventually totally resolved and she even seemed to recover most of her long-term memory. She could finally even feed herself with a spoon! However, our requests for physical therapy were rebuffed so she still had to travel by wheelchair.

It was a couple of months later when her doctor returned and this time Katie just astounded him. I was there when he came out of her room and said, “Ladies, write this up! It’s a miracle!” Straight-faced, I replied that it was really no miracle and that we accomplished such things every day. I predicted that if he gave us another week, Katie “would have a man AND a job”. The doctor laughed and said that he didn’t doubt this.

Katie became part of our unit’s family and everyone loved her. Unfortunately, we never heard from her real family and Katie never asked. But our unit had changed and Katie inspired us all.

Even our patients in supposed comas at the end of life would often wake up to acknowledge their loved ones before they died because we talked to them and encouraged family members to try to communicate with them. What a priceless gift!

It seemed that Katie’s story was having a happy ending and she would stay with us forever. But that was not to be.

Apparently, our medical director had never been informed that we had a non-cancer patient on our unit. Despite our pleas when he found out about Katie, he wrote a transfer order back to the orthopedic unit and even though we told the orthopedic nurses about Katie’s mental recovery, they were very unhappy about the transfer. There were many tears when Katie left us.

We oncology nurses continued to visit her but the trauma of the transfer took its toll. Katie soon regressed. She finally became confused again and would only mutter “I want a beer”. She stopped feeding herself and it wasn’t long before we heard she was found dead in bed. We oncology nurses all felt like we had lost one of our own family members.

But Katie’s story is a true testament to the power of love and respect for life. In our “right to die” society, it is not surprising that Katie was slated for death by withdrawal of treatment because she was considered a hopeless case. She only lived because we nurses took on the system and we won, not only for Katie but also for other patients written off by a callous new medical ethic that insists such people are “better off dead.”

It’s been several years since Katie died and I am now back working full-time in a general ICU. Once again, I’m having to fight attitudes that some patients are better off dead than possibly severely brain injured. One of my colleagues has even nicknamed me “cutie pie”, not for my looks (obviously), but because he laughingly says that when I refer to patients as “cutie pies”, these patients are usually “confused, combative, or demented”.

But I have seen the power of labels such as “hopeless” or “difficult” when applied to patients and I have seen the power of affirmation even save a life.

I remember Katie and smile.

Several months ago, I was called by a mother see her 19-year-old daughter in a nursing home, who had been severely brain-injured in a car accident nine months earlier. At the time of the accident, “Chris” (as I will call her) was so critical that her mother said she had even been approached about donating her daughter’s organs. (And this was a Catholic hospital!)

However, after a few days, Chris was able to get off the ventilator and progressed to what the doctors labeled a hopeless, “vegetative” state. Rehab efforts were considered futile at that point and, like many patients, the choice was between removing the feeding tube or sending Chris to a nursing home after a couple of months. What a choice! Death or ‘warehousing’. Why are there so few long-term rehab facilities for such patients or support for families who want to take their loved ones home? It seems that such severely brain-injured patients are the only ones doctors routinely give up on so soon and label family members who resist withdrawing basic medical care as “in denial”.

When I started with Chris, her eyes were often open but her mom said no one knew if she could see or hear. I started working with her as a volunteer for about a half hour once a week. I told the mom I couldn’t promise anything.

That was last winter.

Now, Chris has made so much progress that no one doubts that she is conscious. She smiles, cries, moves her legs on command, turns her head to look at people talking to her and now appears to be trying to vocalize! Just this week, a tech said she seemed to laugh when he choked on a soda. Chris’s doctor now recommends that she be taken home for more stimulation than she gets at the nursing home. (Since I wrote this in September, Chris has improved even more. She now eats yogurt by mouth and today when I visited her, she finally said Hi! )

Many of Chris’s nurses and techs are really excited. I brought them Jane Hoyt’s wonderful pamphlet “A Gentle Approach: Interacting with a Person who is Semi-conscious or Presumed in Coma” and the head nurse was interested in reprinting it for the other employees. I discovered this pamphlet through New York Nurses for Life and I believe it is a wonderful tool for nurses and families.

Chris’s story — like Katie’s — show that when nurses get ‘turned on’ to a ‘hopeless’ patient, great things can unexpectedly happen!

Nancy Valko, RN


The foregoing essay was published in the November, 2001 issue of the New York State Nurses for Life’s newsletter. Reprinted by author’s permission.

Enforcing the “Right to Die” The Case of Terri Schiavo

Voices Online Edition
Vol. XVIII: No. 3 – Michaelmas 2003

Enforcing the “Right to Die”
The Case of Terri Schiavo

by Nancy Valko, RN

By the time this article is published, Terri Schiavo may be dead.

Terri is not a convicted murderer. She is not terminally ill. Instead, she is a 39-year-old severely brain-injured woman whose parents and siblings, the Schindler family, have been waging a long legal battle to prevent Terri’s husband and the legal system from ending her life.1

In July, 2003, Terri was granted perhaps her last “stay of execution” by a Florida appeals court before her case is returned to Judge George Greer, a Florida judge who has previously and repeatedly ordered Terri’s tube feedings stopped. Although this will give the family’s lawyers some time to file an appeal with the Florida Supreme Court, hope is slim because that court has declined to even hear Terri’s case in the past.

The final hope to save Terri Schiavo’s life may lay with Florida Governor Jeb Bush, who has recently received thousands of petitions for him to intervene to save Terri’s life.2

 

Who is Terri Schiavo and Why Do Some People Believe She Should Die?
In 1990, 26-year-old Terri Schiavo mysteriously collapsed at home and suffered brain damage as a result of oxygen deprivation. A medical malpractice suit ensued and a trust fund was established to pay for Terri’s lifetime care. After the case was resolved, Terri’s husband, Michael, claimed that he now remembered statements his wife had made in the past about not want-ing to be kept alive in such a condition. (A former girlfriend has since disputed that claim because of statements Michael Schiavo made to her.) He petitioned a court for permission to stop her tube feedings and claimed that Terri was in a so-called “vegetative state”, despite videotape evidence of Terri, showing her smiling, responding to her mother and even apparently trying to talk.

Florida law allows food and water to be withheld if a person meets the state’s definition of “vegetative state” as “the absence of voluntary action or cognitive behavior of any kind” and “an inability to communicate or interact purposefully with the environment”. Experts for the husband claim that Terri’s visible responses are mere “reflexes” and disagree with other medical experts who have testified that Terri has at least some basic awareness and could possibly be helped with therapy.

Terri’s parents and siblings volunteered to take responsibility for Terri’s care, but Michael Schiavo has refused to relinquish guardianship or divorce Terri, despite living with and fathering a child by a girlfriend. He has also refused to allow rehabilitation services and, despite the fact that Terri is not terminally ill, had her transferred to a hospice facility three years ago.

Nevertheless, Judge Greer and the Florida courts have so far dismissed all concerns about the circumstances surrounding this case and maintain that the only issues are Terri’s disabled condition and her alleged desire to die. As a Florida probate court said in June, “we understand why a parent who had raised and nurtured a child from conception would hold out hope that some level of cognitive function remained. If Mrs. Schiavo were our own daughter, we could not but hold to such a faith. But in the end, this case is not about the aspirations that loving parents have for their children. It is about Theresa Schiavo’s right to make her own decision, independent of her parents and independent of her husband”.3

While the Schindler family endures such portrayals of themselves as being in denial over Terri’s condition — and incurs enormous legal bills fighting to save her — the courts have allowed Michael Schiavo to use the funds for Terri’s care to pay legal bills. George Felos, Mr. Schiavo’s lawyer who has been involved in several other “right to die” cases, has reportedly received more than $600,000 so far from the fund. His main medical expert was Dr. Ronald Cranford, who has testified in many “right to die” cases and who does not support even spoon-feeding for the so-called “vegetative” and people he terms “minimally conscious”.

Although Terri Schiavo’s case has received only a smattering of national media coverage, disability, pro-life, and other groups throughout the country have expressed outrage and alarm over this precedent-setting case. Terri’s case is being seen as the final dismantling of any legal safeguards to protect the mentally disabled from the deliberate starvation and dehydration that would be unthinkable for a convicted murderer or even an animal. 


The Catholic Connection
As Catholics, Terri’s parents Bob and Mary Schindler requested the help of their local bishop, Bishop Robert Lynch of the Diocese of St. Petersburg, Florida, to help save their daughter’s life.4 Instead, Bishop Lynch issued a statement that “The Catholic Church would prefer to see all parties take the safer path but it must and will refrain from characterizing the actions of anyone in this tragic moment”.5

This statement was particularly discouraging since Father Gerard Murphy, a pastor and former hospital chaplain, had already testified for Terri’s husband that withdrawing Terri’s tube feedings “would be consistent with the teaching of the Catholic church”.6

Unfortunately, there is a long history of Catholic priests and ethicists who have given similar testimony in other public “right to die” cases without rebuttal by the local bishop, despite Church documents and a 1998 statement by Pope John Paul II emphasizing that “the omission of nutrition and hydration intended to cause a patient’s death must be rejected”.7 Instead, these priests and ethicists uniformly mischaracterize people like Terri Schiavo as “gravely ill” and simple feeding tubes as “prolonging death”.

Unfortunately, these ethicists have often held prominent positions in Catholic health care and education for years. It has now become harder and harder to find a Catholic health facility that does more than provide mere lip service to principle on this crucial issue. It is telling that when Archbishop Justin Rigali of St. Louis issued a statement quoting Church teaching during the Steven Becker “right to die” case in 2000, many Catholic priests and ethicists from around the country criticized him for taking such an uninformed and “extreme” position in defense of life.8

Therefore, it is welcome news that Catholic groups are now challenging such misrepresentations in the Terri Schiavo case. Women for Faith & Family president Helen Hitchcock sent a letter to Florida Governor Jeb Bush asking him to “review Terri Schiavo’s case and to intercede on her behalf”, noting that Women for Faith & Family has filed amicus briefs in the similar Cruzan and Busalacchi cases.9 A Catholic media coalition sent a public letter to all the Florida bishops calling for them “to publicly condemn the injustice and moral evil of this deliberate act of euthanasia and to issue a plea for mercy to the Florida courts and to Governor Jeb Bush”.10 The Catholic Medical Association issued a statement that “discontinuing nutrition and hydration in this circumstance violates in its intention the distinction between ‘causing death’ and ‘allowing death'” and quotes the 1989 pastoral statement of the Bishops of Florida that states “We can never justify the withdrawal of sustenance on the basis of the quality of life of the patient”.11

The National Catholic Partnership on Disability, which includes Cardinal Francis George on its board, has highlighted the differences between Terry Wallis, a man who recently regained full consciousness after 19 years when his family refused to give up, and Terri Schiavo, whose husband is seeking to end her life. In their press release, Mary Jane Owen, executive director of the partnership, states, “those of us who live with assorted disabilities are aware that when any of us is deprived of their essential dignity and worth, each of us face that same discounting by the judgments of the culture of death”.12


A Precedent-Setting Case
The importance of saving Terri cannot be overestimated, not only for her right to live but also to apply a brake to the current “right to die” movement that seems bent on terminating people with severe brain injuries or conditions. It is no accident that people like Terri are put into hospices and cases like hers are included in “end of life” education programs for health care professionals and the public. It is no coincidence that withdrawal of treatment decisions have become the justification for the new non-heartbeating organ donation policies.13 And it is the ultimate irony that even families and patients who choose to live can now be overruled by medical futility policies being instituted at hospitals throughout the country.

Terri’s family has put up a courageous fight to save their daughter’s life and, if they finally lose, a terrible precedent will be set for coercing other families to give up fighting for their loved ones. If evidence of Terri’s responsiveness, as well as questions of possible perjury and bias, continue to be ignored by the courts, no one with a disability is ultimately safe from medical or legal discrimination.

Bob Schindler, Terri’s father, poignantly observes, “We pay great lip service in this country to disability rights, but as the degree of a person’s disability increases, the level of legal protection that person receives decreases”.

Notes
1 Schindler family’s website, www.terrisfight.org.
2 Petition to Issue a Stay in Florida Court Proceedings Regarding Theresa Schindler-Schiavo, available online at: www.terrisfight.org/Framesets/CNewsFrame.htm.
3 “Court Says Woman Has Right To Die” by Hugo Kugiya, Newsday, June 3, 2003.
4 “US Supreme Court Rules Woman Can Be Starved to Death over Parents’ Objections”, LifeSite News, 4/26/01. Available online at: www.lifesite.net/ldn/2001/apr/01042602.html.
5 “Husband Seeks to End Life of Brain-Damaged Wife” by Eve Tushnet, National Catholic Register, May 20-26, 2001.
6 Trial testimony of Father Gerard Murphy, January 24, 2000.
7 “Pope Tells American Bishops: Fight Death”, October 2, 1998. Includes full text of ad limina address delivered by Pope John Paul II in Rome to the bishops of California, Nevada, and Hawaii. Available online at www.petersnet.net/browse/553.htm.
8 See “Steven Becker and the Fight for the Soul of Catholic Health Care”, Nancy Valko, Voices Advent 2000. Available online at: www.wf-f.org/valkoadvent.html.
9 WFF’s July 21 Letter to Governor Jeb Bush concerning Terri Schiavo case. Available online at: www.wf-f.org/Bush-Schiavo.html. See text below.
10 “Catholic Media Group Calls on Florida Bishops To Defend Terri”, press release, July 23, 2003. Available online at: www.missionsun.org/faithwatch.htm.
11 Statement of the Catholic Medical Association on the case of Mrs. Terry Schiavo, by Robert J. Saxer, M.D, President of Catholic Medical Association and Steven White, M.D., President of Florida Catholic Medical Association.
12 “National Catholic Partnership on Disability Highlights Differences Between Two Neurologically Disabled Individuals”, press release July 10, 2003. Available online under Recent Headlines at: www.terrisfight.org.
13 See “Ethical Implications of Non-Heart-Beating Organ Donation”, Nancy Valko, Voices Michaelmas 2002. Available online at: www.wf-f.org/02-3-OrganDonation.html.


Nancy Valko, a registered nurse, is president of Missouri Nurses for Life, a spokesperson for the National Association of Pro-life Nurses and a Voices contributing editor.

The Issue is Equality (1993)

The following is an op-ed published in the St. Louis Post-Dispatch newspaper Friday, March 19, 1993 and reprinted on LifeIssues.net on 12/01/2001

By Nancy Valko, RN
Reproduced with Permission

It happened more than 10 years ago. I was pregnant with my third child and the controversy over Baby Doe was still swirling.

Baby Doe was a newborn boy who was born with Down Syndrome and a defect in his esophagus that needed surgical correction before he could drink from a bottle. Although this operation was routine for newborns with this problem, Baby Doe’s parents refused it, and a court upheld their decision. Several parents came forward offering to adopt Baby Doe and even pay for the operation. They were rebuffed, and Baby Doe died six days later without being fed.

I was shocked. Why didn’t the court or the law protect Baby Doe from such obvious discrimination? How could the parents’ lawyer maintain that it was a “loving decision”? Did that mean that parents who make sure their disabled children receive life–saving treatment are unloving?

Four months later I gained a new understanding of the gravity of those questions when my daughter, Karen, was born with Down Syndrome and an even more serious condition than Baby Doe’s: a life–threatening heart defect. I was stunned when Karen’s doctor said that there was an operation available with an 80 to 90 percent success rate, but that he would support my husband and me “100 percent” even if we chose not to operate.

I was furious. As a nurse, I knew that such an operation would have been presented as a technological blessing, not an option, if my baby were not mentally retarded. I told the doctor that I resented such discrimination, that my daughter had rights of her own, and that if he was prejudiced against children with Down Syndrome, he could not touch her.

To the doctor’s credit, he recognized his well–intentioned mistake and promised that he would do his absolute best for my daughter. And he did.

But it frightened me that there was such a biased attitude among even good, caring doctors. Could I really trust any of those health–care providers on whom my child and I depended? I came to realize that Baby Doe’s parents “private” decision had an enormous impact on public policy and attitudes, leaving my baby at risk if I did not protect her.

Even though both Baby Doe and my Karen died several years ago (one by parental decree, one despite the best medical care), I found them often on my mind as I followed the Christine Busalacchi controversy. She, like Baby Doe and Karen, had mental disabilities, although at different points on the disability spectrum. Christine’s father, like Baby Doe’s parents, felt his child had no quality of life and went to court to prevent feeding. Mr. Busalacchi also “won” the right not by changing the law but by political and judicial acquiescence.

But the same question raised in the Baby Doe case must be raised again: Should parents have absolute power over their children’s lives or do the state and society have an obligation to ensure that everyone, disabled or able–bodied, has a right to necessary care and treatment?

We have forgotten that, before the Baby Doe case, the answer used to be obvious.

Why do we view harm to children and the elderly as an issue that the state and society must address regardless of family involvement, while maintaining that no one may even question whether a father has a right to act on his opinion that his mentally disabled daughter would be better off dead? Are mentally disabled people any less vulnerable?

The Busalacchi controversy was not about making a medical decision: Christine was neither dying nor too sick to receive food. In fact, in 1991, she was able to take most of her food by mouth before her father insisted that only the feeding tube be used.

The controversy was not about the severity of disability: There are many people who cannot smile, eat, or laugh like Christine could (even as a so–called “reflex”) who are currently receiving care and treatment. And despite the offensive and medically untestable label of “vegetative,” a recent study showed that most of the families studied were unwilling to withdraw food and water.

No, the issue is really about equality. No one should be denied care or treatment required for others just because he or she has a mental disability.

But for now, the Missouri Supreme Court and the state administration have refused to act on cases such as Busalacchi’s, allowing family choice to be the overriding issue. And, as I personally found out, it is not hard to find doctors or others who would be willing to concur with the family in death decisions.

It is families like mine who have tried to give their mentally disabled loved ones the best quality of life possible who must now watch sadly as the planned death of Christine Busalacchi is portrayed as a victory for family rights.

The disability rights movement has had great success in ensuring access to parking spots, public buildings and education for the disabled. It’s a tragedy when the disabled cannot be ensured access to something as simple as food and water.

Awakenings: Coma Patients Can Recover

Nancy Valko
National Catholic Register
12.03.00-12.09.00
by Eve Tushnet
Reproduced with Permission

In her 30 years of nursing, Nancy Valko brought so many patients out of comas that other nurses started asking if she was a witch.

But Valko, president of Missouri Nurses for Life and spokeswoman for the National Association of Pro-Life Nurses, said that her methods were simple: talking to the patients, playing their favorite music, making simple requests.

Valko recounted, “I used to get teased for talking to comatose patients. I was even asked if I talked to my refrigerator.”

But her talk got results: One day, a 17-year-old boy came to the hospital in a deep coma. The neurosurgeon on duty said, “He won’t live until morning and it’s a good thing, because he’d be a vegetable.”

The boy lived, and soon he could even move at the nurses’ request — but he would never respond when the neurosurgeon was present.

Eventually he was released, and Valko never expected to see him again. But one day a handsome young man walked into the ward and said, “Do you remember me?”

The 17-year-old had come back to thank them for saving his life. When Valko mentioned the neurosurgeon, she recalled, “He got very serious.” The boy said, “I remember him calling me a vegetable. I wouldn’t move for him.”

Valko‚s experience is not unique. Dr. Mihai Dimancescu, a Long Island neurosurgeon who has worked with many patients in comas, noted a growing “recognition that people who have some kind of a brain injury, even if they’re in a coma for several weeks, do have the potential for recovery. A lot of hospitals are more aggressive in the early days of treatment, particularly the university hospitals and some of the larger community hospitals.”

Although Dimancescu stressed that no technique was at all certain, he explained that new knowledge of the brain has shown that “new connections can be made between brain cells where connections have been lost. Parts of the brain can take over the function of other parts that have been lost.”

And the techniques are improving constantly. Paulette Demato, program coordinator for the New York-based Coma Recovery Association, said that a flu medication called amantadine has had a few successes. One woman in New Mexico was given amantadine as a routine flu treatment and awoke from a 16-year-long coma, Demato said (see sidebar).

Give Them a Chance

These treatments are rare and uncertain. But bigger hospitals are starting to change the basic way they treat comatose patients.

In the smaller hospitals, though, many doctors and patient advocates say that the financial pressures of managed care lead doctors to push for withdrawal of costly treatments.

And even doctors can be misinformed about coma recovery.

Demato said, “Particularly with older patients, the medical community will say, ‘They’re not going to wake up, and they’ve already lived their lives’, so how about we disconnect them from all the machinery?”

She added that families are often “not given the opportunity to wait and see what happens. Very often the medical community will try to force a family’s hand and convince the family to cut off care.”

Dimancescu warned that patients in comas may not get proper nutrition or treatment for infections because they have been, in essence, written off by the medical staff.

Pope John Paul II stressed that withdrawal of nutrition and routine medical care is morally unacceptable during his Oct. 2, 1998, ad limina meeting with bishops from California, Nevada and Hawaii. “As ecumenical witness in defense of life develops, a great teaching effort is needed to clarify the substantive moral difference between discontinuing medical procedures that may be burdensome, dangerous or disproportionate to the expected outcome, and taking away the ordinary means of preserving life such as feeding, hydration and normal medical care,” the Pope said.

Valko said that she had seen an 84-year-old woman recover after her doctor and family almost decided to withdraw feeding. “We brought her all the way back,” Valko said. “She was feeding herself Jell-O with a spoon. We taught her how to flirt.”

Valko noted, “That was a woman who was supposedly totally gone; in fact, she was marked for no feeding.”

Valko said that some patients are unresponsive because they are “a little like turtles. They withdraw, out of fright.”

Hanging On Too Long?

But Joanne Lynn, president of Americans for Better Care for the Dying, said that anyone “in coma long enough to have been treated with some vigor” was so unlikely to recover that an awakening would be in “the range of the miraculous.”

“On the average, the error is to hang on too long and put families through too much,” Lynn said. She said that someone who had been in a coma for “a few weeks or a month or two” was extremely unlikely to recover, and that families should act accordingly. She compared dramatic coma-recovery stories to “tales of people who awake from the dead. We do not wait three days before we bury people.”

But neurosurgeon Dimancescu argued that “misconception number one” about patients in comas was the belief that “once somebody’s been in a coma for a week or more the situation is irreversible.”

He added, “A lot of people are diagnosed in a coma when they’re not. They do understand some things.” He urged doctors to “look for a response in an unusual way: eye-blinks, one for yes, two for no; or they might be able to respond by moving a finger.”

He stressed that people in comas may be able to hear: “The last thing to go is the hearing, and the first thing to come back is the hearing. What one has to do is try to be imaginative. Put yourself in the position of somebody who’s had a severe insult to the brain, in a hospital bed, probably very frightened.”

Dimancescu said that some people are skeptical of coma stimulation because they “believe that stimulation and therapy is recommended ad infinitum, no matter what the person’s progress is. That would be a waste of resources and create false hopes in the family.” In practice, he said, intense care was “usually recommended for about three months.”

He added that doctors‚ predictions were often wrong — patients who did not seem badly injured might never recover, but patients with greater injuries could awaken.

Valko summed it up: “We don’t know as much as we think we do, doctors and nurses.”

Voices 2007: Whatever Happened to Common Sense at the End of Life?

Voices Online Edition Vol. XXII, No. 3
Michaelmas 2007

Bioethics Watch:

 

by Nancy Valko, RN

Withdrawal of treatment, “living wills”, terminal sedation, assisted suicide, organ donation, etc. Currently, it’s virtually impossible to escape all the death talk in the media and elsewhere. For example, if you are admitted to a hospital for almost any reason, you or your relatives will be asked if you have or would like information about documents formalizing your “end-of-life” choices.

But despite all the hype, not every situation involving end-of- life issues has to involve wrestling with big ethical dilemmas. Many times, there are relatively simple considerations or strategies that actually used to be commonly employed until the introduction of the so-called “right to die”. Accurate information, common sense and a good understanding of ethical principles can cut through the “right-to-die” fog and make a person’s last stage of life as good as possible both for the person and his or her family.

Here are just four examples:

Prolonging Death or Providing Comfort?

I once cared for Mary (all names have been changed), an older woman who was near death with cancer. Her loving family took her to the doctor when she became confused and severely short of breath. An x-ray showed a fluid buildup near her lungs. The doctor inserted a long needle, aspirated the fluid and Mary immediately improved. However, the family was still worried. They asked me what they should do if the fluid built up again because they were afraid that this would prolong her death. I told them that the primary question now was comfort. If, for example, fluid did slowly build up again but Mary was comfortable, it could be burdensome to aspirate the fluid. However, if Mary did develop severe breathing problems that could not be controlled by medication, they might want to consider another aspiration since the goal was to make Mary as comfortable as possible during the short time she had left.

“Why, that’s just common sense!” the daughter exclaimed. Exactly!

Mary soon peacefully died at home with her family, never needing another medical intervention.

Families often suffer undue fear about prolonging death when a family member is dying and this can spoil what can be one of the most meaningful times in life.

After almost 40 years as a nurse, I have found that barring murder or other such situations, people generally die when they are ready to die even regardless of medical interventions. When death is imminent, the big priority should be comfort rather than whether a person might live a few hours or days longer.

What if an Elderly Person Doesn’t Want Treatment?

One of my friends was very worried about his elderly grandmother whose health seemed to be declining. She ate very little and said she was ready to die. Efforts to improve grandma’s nutrition didn’t work and she refused a feeding tube. My friend was finally able to persuade her to at least try a small feeding tube inserted through her nose.

Within a short time, there was a dramatic improvement in grandma’s mood and physical functioning. According to my friend, she was back to where she was 10 years before and the feeding tube was removed. (She lived comfortably several more years.)

Too often, doctors and even families assume that an elderly person who doesn’t feel well is just dying of old age without exploring possibilities such as depression, poor nutrition, loneliness, treatable physical problems, etc. Sometimes the answer may be as simple as antidepressants or better nutrition. At the very least, it is worthwhile to explore the options. If an elderly person is truly dying, he or she will die but the family will have the comfort of knowing that they did what they could do.

For example, in a similar situation, another friend was caring for her frail, elderly mother with chronic lung and heart problems. Ann’s mom agreed to try a feeding tube but after a short initial improvement, her mom started going downhill again. Fluid began to build up and the feedings were stopped. Ann’s mom was given what little food and fluid she wanted and she eventually died of natural causes.

Particularly in the frail elderly, it can be difficult to determine whether or not a person is truly dying. And while we are never required to accept treatment that is medically futile or excessively burdensome to us, sometimes this can be hard to determine. Far too many times, feeding tubes and other interventions are automatically assumed to be futile and/or burdensome or reasonable options are presented as just a yes or no choice. But there is another alternative that is often ignored: trying an intervention with the option of stopping it if it truly is futile or burdensome.

There are no guarantees in life or death but even finding out that something doesn’t work can be a step forward.

Shouldn’t We Be Allowed to Die?

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 this 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 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.”

Cases like this are usually not miracles. Virtually every doctor and nurse has seen at least one surprising recovery and almost every day brings a new media report about yet another unexpected recovery. However when such considerations as cost, a poor prognosis or low quality of life intersect with the “right to die”, people can literally be forced to die prematurely. When doctors and ethicists decide to play God — even with good intentions — that arrogance can be fatal.

Isn’t It Compassionate to Support a Person’s Right to Die?

When I first met Frank, I was puzzled. Frank was a terminally ill man who I was supposed to see for pain control but he didn’t seem to be in any physical pain at all. I talked to Frank’s wife Joan who tearfully confided to me that Frank was cleaning his gun collection when he asked her if she would still be able to live in their home if, in his words, “anything happened”.

Joan knew he was talking about shooting himself and even though she was horrified, she said she knew the right thing to say: “I will support any decision you make”. However, she later panicked and called the doctor to ask about pain control and that’s when I came in.

When I suggested to Joan that Frank’s real question might not be about their home but rather about whether his slow death might be too hard on both of them, she was stunned and said that this never occurred to her. She loved Frank and she wanted to care for him until the end.

Frank and Joan then finally had an open and long overdue discussion about their sorrow and fears. When I last saw them, they were holding hands and smiling. Frank died peacefully — and naturally — a few weeks later with his wife at his side.

As a situation like this shows, political correctness can actually be lethal itself. Unfortunately, the public is given the message that “tolerance” is a paramount value. From abortion to euthanasia, we are constantly told that opposition to these practices is callous and inhumane. We are told that we cannot impose our own narrow morality on people who do not agree.

Sadly, in the case of assisted suicide/euthanasia, it’s this tolerance that really can make the life or death difference. I’ve worked with some suicidal people over the years and I have found that ambivalence over whether or not to kill oneself is virtually routine. For example, one terminally ill woman I cared for said that she would take an overdose when she left the hospital. She didn’t seem sad or depressed and was actually quite animated and smiling. As she put it, she was just tired of being tired and feared that the future “was just all downhill”.

However, when we talked about her feelings, the ramifications of her decision and what help was available, she slowly changed her mind. But when she excitedly told her friends about her new decision to live, these friends tracked me down to give me a real tongue-lashing about not supporting this woman’s original choice.

The ultimate irony of the push to spread legalized assisted suicide beyond Oregon’s terrible law is that at the same time we naturally see suicide as a tragedy to be prevented, we are pressed to accept that suicide is a compassionate choice for the terminally ill and even others.

A Time to Live, a Time to Die

When I worked as a hospice nurse years ago, our guiding principle was that we neither prolonged nor hastened dying. I totally supported this and I felt great satisfaction helping my patients and their relatives live as fully as possible until natural death. We nurses not only made sure that people were as physically comfortable as possible, we also helped with spiritual, emotional and practical concerns.

Unfortunately, the “right-to-die” enthusiasts have had way too much success in trying to convince both medical personnel and the public that choice in dying is really the ultimate principle. However, trying to micromanage death by such measures as withdrawal of basic treatment, terminal sedation, lethal overdoses, etc. profoundly changes the medical system, even for people who may recover or who may live with disabilities.

The “right to die” movement is really more about despair rather than hope or true justice. People deserve the best in health care and that includes the right to both excellent care and a natural lifespan.

It’s just common sense.

Brain Death and Catholic Teaching (2014)

Voices Online Edition
Vol. XXIX, No. 1
Pentecost 2014

Brain Death and Catholic Teaching

by Nancy Valko, RN

Earlier this year, the public was transfixed by two news stories involving brain death. The circumstances of Jahi McMath and Marlise Muñoz were very different on the surface, but the legal and ethical questions concerning the diagnosis of brain death and the use of life support in both women started a firestorm of controversy even within the Catholic Church.

No wonder the average person, Catholic or not, is confused.

It is important to first scrutinize the facts of both cases to begin to understand why there is a lack of unity on such life and death matters even among respected Catholic sources.

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 January the National Catholic Bioethics Center issued a statement that said, in part, “… the determination of death by the rigorous application of the neurological criteria is considered legitimate by the Catholic Church, which accepts the findings of science in such a determination.”1

In a January 10, 2014 USA Today article, ethicist Arthur Caplan, head of the bioethics division at New York University’s Langone Medical Center, condemned the judge’s decision for Jahi’s family, declaring that brain dead people will eventually “start to decompose,” even if the ventilator was continued.2

However, almost 3 months later in a March 28, 2014 interview with NBC Bay Area News,3  Jahi’s mother reported that her daughter now moves her arms, legs, and head spontaneously but “is still asleep” and unable to move on command. Jahi is currently being fed by a feeding tube, sustained on a ventilator on room air (no extra oxygen) and receives physical therapy 3 to 4 times a week.  At the time of this interview, Ms. McMath had just received an award from the Terri Schiavo Life & Hope Network as a relative who protects “a loved one against overwhelming odds.”

While Jahi’s movements described by her mother were dismissed by some experts as merely “spinal reflex movements,”4 it was a foot movement in the 2008 case of Zack Dunlap5 that led doctors to rethink their diagnosis of brain death in him and stop an imminent organ donation. Although Zack made a very fast recovery and Jahi’s continued lack of apparent conscious movement is not as hopeful, critics of brain death point to these kinds of developments as showing how much we still do not know about the human brain and its capabilities.

Although the medical criteria used to determine brain death vary — often widely — from one hospital to another, the definition of brain death is supposed to show an irreversible lack of function of the entire brain and brain stem. In Zack Dunlap’s case, he had more testing, including a test showing a lack of blood flow to the brain, than the average person diagnosed as brain dead.

Marlise Muñoz

Marlise Muñoz was a 33-year-old woman who was 14 weeks pregnant with her second child in November 2013 when she collapsed from a suspected blood clot and stopped breathing at home. She was taken to a Texas hospital and, like Jahi McMath, revived and put on a ventilator. Like Jahi, Mrs. Muñoz was also declared brain dead within a short time; but in this case, the roles of the family and hospital were reversed. Mrs. Muñoz’s husband was ready to remove the ventilator and the hospital objected because of a Texas law, like those in several other states, that prohibits the withdrawal of life support from a pregnant woman so that the baby has at least a chance to survive to birth.

Mr. Muñoz strenuously disagreed, stating that his wife told him she would not want to live in such a state and, in several news reports, voiced his concern that the lack of oxygen and effects from resuscitation might have damaged his unborn child. He went to court to force the hospital to remove the ventilator.

This time, virtually all the many ethicists and experts contacted by the media supported the husband’s decision to remove the ventilator. Many argued that the 1989 Texas law was only meant to apply to pregnant women in conditions like a “vegetative state,” not a brain-dead woman. Some even claimed that removing the ventilator was similar to a legal late-term abortion. As the case wound its way in court for weeks, lawyers for Eric Muñoz eventually claimed that tests showed the now-22-week-unborn child was “distinctly abnormal” with fluid building up inside the skull, a possible heart problem, and lower extremities “deformed to the extent that the gender cannot be determined.”6 In an interview on CNN’s Anderson Cooper 360°, Mrs. Muñoz’s mother “described in agonizing detail in the interview how towards the end, her daughter’s body had begun to visibly deteriorate, making it difficult to look at an empty shell of what had been her beloved daughter.”7

A judge ordered that life support be removed, and on January 24, 2014, both mother and baby died.

While many commentators stated that it was virtually impossible for a pregnant mother declared brain dead to deliver a healthy baby, a 2010 British Medical Journal study reported that “In 12 (63%) of 19 reported cases, the prolonged somatic support [of the mother declared brain dead] led to the delivery of a viable child.”8

In the Muñoz case, virtually all pro-life and Catholic ethicists agreed that giving the unborn child at least a chance to be born was the ethically correct position. And, of course, birth defects do not make a baby unadoptable.

Confusion Among Catholics

The controversy about brain death has been simmering among Catholic ethicists, medical experts, and theologians for many years.

It all started with a 1968 Harvard paper titled “A Definition of Irreversible Coma — Report of the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death.”9 Within a very few years, all 50 states included brain death in the legal definition of death. This allowed brain death criteria to be used for the purpose of organ transplantation. Before this, organ transplantation was virtually impossible in patients declared dead by the traditional standard of irreversible cessation of breathing and heartbeat. In those cases, vital organs were too damaged by lack of blood flow and oxygen to be useful. Brain death allowed organs to be harvested while a ventilator supported breathing and the heart was still sending blood to vital organs.

In 1975, the Committee on Health Affairs of the United States Catholic Conference issued “Guidelines for the Determination of Brain Death,” which concluded that criteria for brain death to provide “moral certainty” of brain death were “morally sound and acceptable.” In 1981, the Pontifical Council “Cor Unum” stated that the determination of the moment of death is a medical, not a theological, judgment.10

The Pontifical Academy of Science studied the question of determination of death in 1985 at the request of Pope John Paul II. The Academy concluded “From the debate it emerged that cerebral death is the true criterion of death, since the definitive arrest of the cardiorespiratory functions leads very quickly to cerebral death.”11  Apparently searching for greater clarity, Pope John Paul II raised the question again with the Pontifical Academy in 1989. The Academy reached the same conclusion.

In 1995, the Pontifical Council for Pastoral Assistance to Health Care Workers under Fiorenzo Cardinal Angelini issued its Charter for Health Care Workers. The legitimacy of neurological criteria was accepted by this body as well, and it concluded, “When total cerebral death is verified with certainty, that is, after the required tests, it is licit to remove organs and also to surrogate organic functions artificially in order to keep the organs alive with a view to a transplant.”12

In 2000, Pope John Paul II gave an address to a Vatican conference on organ donation where he stated:

Here it can be said that the criterion adopted in more recent times for ascertaining the fact of death, namely the complete and irreversible cessation of all brain activity, if rigorously applied, does not seem to conflict with the essential elements of a sound anthropology. Therefore a health-worker professionally responsible for ascertaining death can use these criteria in each individual case as the basis for arriving at that degree of assurance in ethical judgment which moral teaching describes as “moral certainty.” This moral certainty is considered the necessary and sufficient basis for an ethically correct course of action. Only where such certainty exists, and where informed consent has already been given by the donor or the donor’s legitimate representatives, is it morally right to initiate the technical procedures required for the removal of organs for transplant.13

Nonetheless, the Pontifical Academy of Sciences published a statement in 2008 under the title “Why the Concept of Brain Death Is Valid as a Definition of Death.”14

In November 2008, Pope Benedict XVI gave an address to a prestigious international conference on organ transplants in which he stated:

In an area such as this, in fact, there cannot be the slightest suspicion of arbitration and where certainty has not been attained the principle of precaution must prevail. This is why it is useful to promote research and interdisciplinary reflection to place public opinion before the most transparent truth on the anthropological, social, ethical and juridical implications of the practice of transplantation. However, in these cases the principal criteria of respect for the life of the donator must always prevail so that the extraction of organs be performed only in the case of his/her true death.15

In the meantime, other respected Catholic doctors and ethicists like Paul Byrne MD, Alan Shewmon MD, and E. Christian Brugger PhD, as well as other doctors, nurses, and ethicists raised alarms about the validity of brain death criteria, including the lack of standards for testing from one hospital to another and the continued survival of some patients declared brain dead for years. They cite cases where such patients grew, achieved puberty, gestated their unborn baby for months, etc., as well as the reported cases of recoveries like Zach Dunlop’s.

In response to the paucity of such critiques at Vatican conferences, a conference called “Signs of Life,” featuring critics of brain death from all over the world, was held near the Vatican in February 2009.16

Now with more and more people alarmed about the issue of brain death, especially when organ transplantation is involved, it seems that the controversy is far from over.

Personal observations

Back in the 1970s when I was a young intensive care unit nurse, no one I knew questioned the new innovation of brain death. We trusted the experts.

However, as the doctors diagnosed brain death in our unit and we cared for these patients until their organs were harvested, some of us became uncomfortable. For example, doctors told us that these patients would die anyway within two weeks even if their ventilators were continued, but no studies were cited. I asked many questions but was told that greater minds than mine had it all figured out. It was years before I realized that these doctors did not have the answers to my concerns either.

Over the ensuing years, I began to see many more changes in brain death diagnosis and organ transplantation that alarmed me.

These include the innovation in the 1990s of Donation after Cardiac Death (DCD, formerly known as non-heart beating organ donation), in which brain death need not be determined but instead is based on when (or if) a critically ill — but not brain dead — patient stops breathing within an hour after the ventilator is removed with the agreement of the family.

While the general public is mostly unaware of DCD, such organ donor protocols are now policy in both Catholic and secular hospitals. Ironically while so many Catholic ethicists and conferences endorse brain death as the true standard for death, the lack of brain death standards in DCD is virtually ignored. One of the innovators of DCD organ transplantation, Dr. Michael DeVita, even admitted “the possibility of [brain function] recovery exists for at least 15 minutes” after heartbeat and breathing stops but stated that “the 2-minute time span (before organ removal) probably fits with the layperson’s conception of how death ought to be determined.”17

It is frightening but perhaps illuminative that one of the first known potential DCD donors was a conscious woman with severe multiple sclerosis who requested that her ventilator be removed and that her organs be taken when she stopped breathing.18 (In the end, like a significant number of other DCD donors,19 she continued to breathe for too long for her organs to be usable.)

Other developments and proposals were also disturbing: Paying living donors for organs, presumed consent so that only people who signed a paper saying that they did not want their organs taken were exempt, some doctors in Belgium touting their success pairing assisted suicide/euthanasia with organ transplantation20 and even some ethicists proposing that the dead donor rule itself be eliminated in order to get more organs to transplant.21 The dead donor rule is an ethical norm that states that the donor must be dead before organs are harvested and the harvesting itself must not cause the death of the donor.22

On the other hand, I also saw cases where families were told that their loved one was brain dead for the purpose of withdrawal of treatment, not organ transplantation. When I pointed out that some of these patients continued to breathe on their own after the ventilator was removed and thus were obviously not brain dead by any criteria, I was often met with shrugs and comments like “close enough” or “she was going to die soon anyway.” Attitudes like that chilled me to the bone. It seemed that pessimism, hubris, and misplaced sympathy — rather than evil intent — trumped ethical integrity. The secular media often echoes this apathy, especially when it erroneously equates coma or the so-called “vegetative state” with brain death itself. The result can be lethal.

After years of study and prayer, my personal stand is rejection of two extremes: that brain death is settled science and ethics that no one dare even question; and that withdrawal of ventilators with or without organ donation is always tantamount to murder.

I believe that ventilators, like all other forms of treatment, are subject to the same traditional principle: Treatments that are futile in terms of survival or unduly burdensome to the person can be ethically withdrawn according to strict principles ensuring that death is not intended. I believe in the traditional hospice philosophy to neither hasten nor prolong death.

Personally, I have not signed a standard organ donor card because the wording is so vague (death, not brain death or DCD, is all that is mentioned) and in some states that card can even automatically override family decision-making. I have told my family that I agree to the donation of every tissue that can be used after a careful determination of natural death. Tissues like corneas, heart valves, bone, and skin are not dependent on immediate harvesting after determination of death.

I do not take this position lightly. Right now, I have a daughter-in-law who is in desperate need of a kidney transplant, the most common transplant. She has studied the issue and told her doctors that she wants a living donor. Living donors are generous family members, friends, or even strangers who willingly offer one of their two kidneys for transplant after testing for compatibility.

My daughter-in-law’s decision was based not only on ethical concerns about brain death and non-heart beating organ donation but also on the facts that organ availability is greater with living donor kidneys and that such kidneys last almost twice as long as cadaver kidneys and work immediately.23

Unfortunately, it is uncertain whether the controversy over brain death or even DCD will ever be completely resolved, even within the Catholic community of experts and authorities. However, I do have hope that the issue of organ transplantation that is such a prime motivator of brain death determination and DCD may someday become moot.

Not only have treatments like adult stem cell transplants and improved therapies helped many people with end-stage organ disease survive, but great strides are being made toward developing artificial organs. For example, just last year scientists in Australia grew a tiny but functioning kidney using human skin cells.24 If a person’s own cells can be used to grow an organ, that could eliminate the rejection problem that causes so many transplants to fail, as well as the need for the current powerful and expensive drugs used to prevent rejection.

In the meantime, there must be the honest, respectful discussion about the critical issues of brain death, DCD, and organ donation, based on the highest ethical principles and scrutiny.

Notes:

1 “Jahi McMath and Catholic Teaching on Determination of Death.” National Catholic Bioethics Center Resources. January 7, 2014. ncbcenter.org/resources/jahi-mcmath-and-catholic-teaching-on-the-determination-of-death.

2 “Ethicists criticize treatment of teen, Texas patient” by Liz Szabo. USA Today. January 10, 2014. usatoday.com/story/news/nation/2014/01/09/ethicists-criticize-treatment-brain-dead-patients/4394173/.

3 “‘She’s Still Asleep,’ Jahi McMath’s Mother Says of Brain-Dead Daughter” by Lisa Fernandez. Friday, Mar 28, 2014. NBC Bay Area. nbcbayarea.com/news/local/Shes-Still-Asleep-Jahi-McMaths-Mother-Says-of-Brain-Dead-Daughter-252700851.html.

4 Ibid

5 “Was Zack Dunlap’s Recovery a Miracle?” by Nancy Valko, RN. Voices. Pentecost 2008. wf-f.org/08-2-Valko.html.

6 “Brain-Dead Marlise Munoz’s Fetus Is ‘Distinctly Abnormal.’ Please, Texas, Let This Nightmare End” by Emily Bazelon. Slate. January 23, 2014. slate.com/blogs/xx_factor/2014/01/23/marlise_munoz_case_the_ fetus_of_a_brain_dead_texas_woman_is_said_to_be_distinctly.html.

7 “Husband of brain dead woman who sued to have pregnant wife’s life support turned off may be forced to pay for her hospital stay” UK Daily Mail. February 2, 2014. dailymail.co.uk/news/article-2550352/Marlise-Munoz-case-Husband-brain-dead-woman-sued-pregnant-wifes-life- support-turned-forced-pay-hospital-stay.html.

8 “One life ends, another begins: Management of a brain-dead pregnant mother-A systematic review.” by Majid Esmaeilzadeh, Christine Dictus, Elham Kayvanpour, et al. BMC Medicine. 8:74, 2010. biomedcentral.com/1741-7015/8/74.

9 “A Definition of Irreversible Coma-Report of the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death.” Journal of the American Medical Association. August 5, 1968, 205(6): 337-340. hods.org/english/h-issues/documents/ADefinitionofIrreversibleComa-JAMA1968.pdf.

10 “Catholic Teaching Regarding the Legitimacy of Neurological Criteria for the Determination of Death” by John M. Haas, PhD, STL, KM. National Catholic Bioethics Center Quarterly. Summer 2011. Reprinted on CatholicCulture.org: catholicculture.org/culture/library/view.cfm?id= 9719.

11 Ibid.

12 Ibid. (Cf. FAQ on “Brain Death”: ncbcenter.org/page.aspx?pid=1285# receiveOrgan).

13 Address to the 18th International Congress of the Transplantation Society. Pope John Paul II, August 29, 2000, §5. vatican.va/holy_ father/john_paul_ii/speeches/2000/jul-sep/documents/hf_jp-ii_spe_ 20000829_transplants_en.html. Also here, including comments on cloning: ncbcenter.org/page.aspx?pid=1236.

14 “We need to achieve a convergence of views and to establish an agreed shared terminology. In addition, international organizations should seek to employ the same terms and definitions, which would help in the formulation of legislation.” On the Pontifical Academy of Sciences website: casinapioiv.va/content/accademia/en/publications/extraseries/brain death.html.

15 “Address of His Holiness Benedict XVI to Participants at an International Congress Organized by the Pontifical Academy for Life.” November 7, 2008. vatican.va/holy_father/benedict_xvi/speeches/2008/november/documents/hf_ben-xvi_spe_20081107_acdlife_en.html.

16 “‘Brain Death’ is Life, Not Death: Neurologists, Philosophers, Neonatologists, Jurists, and Bioethicists” by Hilary White. LifeSiteNews.com. February 26, 2009. lifesitenews.com/news/archive/ ldn/1990/22/9022604.

17 “The Death Watch: Certifying Death Using Cardiac Criteria” by Michael A. DeVita, MD, University of Pittsburgh Medical Center. Prog Transplant 11(1):58-66, 2001. (Cf. Valko, “Organ Donation: Crossing the Line.” Voices. Advent-Christmas 2011: wf-f.org/11-4-Valko.html).

18 Michael A. DeVita and James V. Snyder, “Development of the University of Pittsburgh Medical Center Policy for the Care of Terminally Ill Patients Who May Become Organ Donors after Death Following the Removal of Life Support” in Procuring Organs for Transplant. Robert M. Arnold, et al, eds. Baltimore: Johns Hopkins University Press, 1995.

19 “Organ Procurement after Cardiocirculatory Death: A Critical Analysis,” Mohamed Y. Rady, MD, PhD; Joseph L. Verheijde, PhD, MBA; and Joan McGregor, PhD. Journal of Intensive Care Medicine. 23(5), 2008. jic.sagepub.com/cgi/reprint/23/5/303.pdf.

20 “Initial Experience with Transplantation of lungs recovered from Donors after Euthanasia,” by D. Van Raemdonck, et al. Applied Cardiopulmonary Pathophysiology. 15:38-48, 2011. applied-cardiopulmonary-pathophysiology.com/fileadmin/downloads/acp-2011-1_20110329/05_vanraemdonck.pdf.

21 “The Dead-Donor Rule and the Future of Organ Donation,” by Robert D. Truog, MD; Franklin G. Miller, PhD; and Scott D. Halpern, MD, PhD. New England Journal of Medicine. 369:1287-1289, 2013. nejm.org/doi/full/10.1056/NEJMp1307220.

22 “Is Organ Procurement Causing the Death of Patients?” by James Dubois. Issues in Law and Medicine. 18(1):21-41. citations.duhaime. org/I/IssuesLMed.aspx 21 (2002-2003); cited in “Dead Donor Rule Definition,” duhaime.org/LegalDictionary/D/DeadDonorRule.aspx.

23 “Living Donor Kidney Transplant,” Barnes Jewish Hospital. barnesjewish.org/living-donor-kidney-transplant.

24 “Kidney grown from stem cells by Australian scientists,” by Jonathan Pearlman. The Telegraph. December 13, 2013. telegraph.co.uk/ news/worldnews/australiaandthepacific/australia/10520058/Kidney-grown-from-stem-cells-by-Australian-scientists.html.

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Nancy Valko, a registered nurse from St. Louis, is a spokesperson for the National Association of Pro-Life Nurses and a Voices contributing editor. She and her family live in St. Louis.