2004 Voices: The Pope’s Address on Feeding and the “Vegetative” State

Voices Online Edition Vol. XIX No. 3 Michaelmas 2004

Bioethics Watch The Pope’s Address on Feeding and the “Vegetative” State

 

by Nancy Valko, RN

“When someone suffers an illness or injury that puts them in a persistent vegetative state, they have put their first foot on the path to eternal life. When we remove artificial nutrition and hydration, we open the door and say, ‘Have a wonderful journey'”.

Sister Jean deBlois, ethicist, Aquinas Institute, Spring, 2004

“The sick person in a ‘vegetative state’, awaiting recovery or a natural end, still has the right to basic health care (nutrition, hydration, cleanliness, warmth, etc.), and to the prevention of complications related to his confinement to bed. He also has the right to appropriate rehabilitative care and to be monitored for clinical signs of eventual recovery”.

Pope John Paul II, March 20, 2004

Before 1972, when influential neurologists Drs. Fred Plum and Bryan Jennett coined the term “persistent vegetative state” (PVS) to describe a condition in which a person was presumed awake but unaware because of an injury or illness involving the brain, the idea of removing a feeding tube from a brain-injured person was simply unthinkable. The experience of the Nazi euthanasia program — which used medical personnel to end the lives of the disabled, mentally ill and others characterized as “useless eaters” — was considered the ultimate betrayal of medical ethics and still fresh in many minds.
But around this same time, the euthanasia movement was finally gaining traction with its “living will” document, where a person could request no heroic measures when he or she was dying. Because traditional ethics held that medical treatment could be withheld or withdrawn if it was futile or excessively burdensome, there were few objections to such a document and state legislatures started passing laws giving legal status to such documents.

However, it wasn’t long before “right to die” court cases involving people considered in PVS started to result in feeding tubes being withdrawn with the support and court testimony of some doctors and ethicists who maintained that PVS patients would never recover and that such patients would refuse medically assisted food and water. As a result, PVS began to be added to state “living will” laws and eventually such laws expanded to include documents allowing the withdrawal of virtually any kind of medical treatment or care by a designated surrogate when a patient was mentally unable to make decisions.
Some influential Catholic ethicists developed theological justifications for withdrawing food and water in the special case of PVS by arguing that there was no moral obligation to maintain the lives of such people who could supposedly no longer achieve the spiritual and cognitive purpose of life. Terms like “futile” and “burdensome” — the traditional ethical standard for withdrawing treatment or care — were redefined . “Futility” was now to mean little or no chance of mental not physical improvement, and “burdensome” to the patient, was extended to include family distress, medical costs and even social fairness in distributing “scarce health care resources”.

Despite myriad Church statements supporting the basic right to food and water (see sidebar page 34), some of these Catholic ethicists even testified in “right to die” court cases that their view was consistent with Church teaching, insisting that there was no intention to cause death by starvation and dehydration but rather merely withdrawing unwanted and useless treatment.

Unfortunately, some Catholic ethicists have moved even beyond PVS, and now include conditions such as Alzheimer’s and the newly named “minimally conscious state” (in which patients are mentally impaired but not unconscious) as additional circumstances in which giving a person medically assisted food and water, antibiotics, etc., is no longer obligatory.

Pope’s Address on “Vegetative State” Surprises Many

Against such a backdrop, Pope John Paul II’s March 20 address to the International Congress “Life-Sustaining Treatments and Vegetative State: Scientific Advances and Ethical Dilemmas“, affirming the obligation to feed and care for patients considered in PVS, was, in the words of one Catholic ethicist, a “stunner”. Not surprisingly, reactions to the pope’s statement varied widely and some were scathing.

For example, ethicists Arthur Caplan and Dominic Sisti described the pope’s statement as “flawed”, “at odds with the way medicine has been practiced in the United States for well over a decade” and “fundamentally at odds with the American values of self-determination, freedom and autonomy”.2

Sister Jean deBlois, C.S.J., director of a master’s degree program for health care executives at Aquinas Institute in St. Louis, said that the pope’s statement places “an unnecessary and unfounded burden on family members faced with treatment decisions on behalf of their loved ones” and that “artificial nutrition and hydration… holds no comparison to a meal”.3

Father John F. Tuohey, who holds the endowed chair in applied health-care ethics at Providence St. Vincent Medical Center in Portland, Oregon, wrote an article in the June issue of Commonweal magazine treating the pope’s statement as a poorly argued thesis proposal by a misinformed student.4

Peggy Wilkers, president of Fitzgerald Mercy Hospital Nurses Association of Pennsylvania was quoted as saying the pope’s statement “will change very, very little” and that she and other nurses would base their patient care “not on what the pope says but on what the family wants”. She defended families “who would love to keep their loved one alive knowing full well that they will never be who they were before” but can’t take care of them at home and can’t find affordable long-term care.5

However, many others applauded the pope and at least one ethicist changed his opinion about withdrawing feedings as a result of the pope’s statement.6

Pro-life groups like The National Right to Life Committee and the American Life League welcomed the pope’s statement, especially in view of the ongoing Terri Schiavo “right to die” case in Florida. Women for Faith & Family posted the statement on its web site as soon as it appeared.

The World Federation of Catholic Medical Associations and The Pontifical Academy for Life issued a joint statement calling the pope’s words “deeply inspiring”.7
The National Catholic Bioethics Center described the pope’s statement as “a welcome clarification of Catholic thinking on one of the most vexing and controversial issues in health care”.8

Richard Doerflinger, Deputy Director of the Secretariat for Pro-Life Activities, US Conference of Catholic Bishops, wrote that the pope’s statement was not only an affirmation of human dignity but also “a recognition of the latest medical and scientific findings on the ‘vegetative’ state, reviewed at length during the congress itself. Misdiagnosis of the ‘vegetative’ state is common, prognoses (including predictions that patients can never recover) are far from reliable, and the assumption that this state of unresponsiveness entails complete absence of internal sensation or awareness is being seriously questioned”.9

However, the Catholic Health Association (CHA), a national group of more than 2000 hospitals and health organizations, was less enthusiastic.

As USA Today reported, “Until now, the 565 hospitals in the Catholic Health Association considered feeding tubes for people in a persistent vegetative state ‘medical treatment’, which could be provided or discontinued, based on evaluating the benefits and burdens on patient and family”.10

Thus, the pope’s words could have a profound impact on practices and policies in Catholic health institutions, many of which had relied on ethicists like Dominican Father Kevin O’Rourke of St. Louis University, who have long maintained that there is no benefit possible in maintaining the mere physical existence of PVS patients.

Father Michael Place, president of the CHA, said that the pope’s statement “has significant ethical, legal, clinical, and pastoral implications” that might even affect “those patients who are not in a persistent vegetative state” and will continue to be studied by CHA.11

In the meantime, CHA is advising its members that “Until such time as we have a greater understanding of the meaning and intent of the pope’s allocution, Catholic hospitals and long-term care facilities should continue to follow the United States Conference of Catholic Bishops’ Ethical and Religious Directives for Catholic Health Care Services as interpreted by the diocesan bishop”.12

Ironically, just a few weeks ago, a reporter from a national secular newspaper called me about Pope John Paul II’s statement. A self-described “cafeteria Catholic”, he was perplexed after talking to several Catholic health experts who maintained that the pope’s statement needed months of intensive study to understand its intent and meaning. Even this reporter said that he found the pope’s statement very clear and explicit and he could not understand the apparent evasiveness of these Catholic experts.

Challenge – and Opportunity While the average person might assume that the pope’s eloquent defense of the most severely disabled in our society would finally resolve the controversy over PVS and feeding tubes in at least Catholic health facilities, the battle is far from over.

Not only do we need consistent, unambiguous policies in Catholic health facilities that protect the lives of the severely brain-injured but, as the pope points out, we also need better support for such patients and their families. This is an area where the Catholic health system has a real opportunity to take a powerful leadership role in health care.

Patients and their families cannot help but benefit from new opportunities for appropriate rehabilitative care as well as spiritual, physical and emotional assistance.

And whether we are clergy, health care providers, ethicists or laypeople, we do well to heed the words of Jesus that the pope included in his statement: “Amen, I say to you, whatever you did for one of these least brothers of mine, you did for me”. (Mt 25:40)

FOOD AND WATER: Some excerpts from Catholic sources
“Ultimately, the word euthanasia is used in a more particular sense to mean ‘mercy killing’, for the purpose of putting an end to extreme suffering, or having abnormal babies, the mentally ill or the incurably sick from the prolongation, perhaps for many years of a miserable life, which could impose too heavy a burden on their families or on society”.13 Declaration on Euthanasia, May 1980

“Nutrition and hydration (whether orally administered or medically assisted) are sometimes withdrawn not because a patient is dying, but precisely because a patient is not dying (or not dying quickly enough) and someone believes it would be better if he or she did, generally because the patient is perceived as having an unacceptably low ‘quality of life’ or as imposing burdens on others”.14 NCCB Committee for Pro-Life Activities, 1992.

“The administration of food and liquids, even artificially, is part of the normal treatment always due to the patient when this is not burdensome for him: their undue suspension could be real and properly so-called euthanasia”.15 The Charter for Health Care Workers, 1995.

” the presumption should be in favor of providing medically assisted nutrition and hydration to all patients who need them”.16 Pope John Paul II, 1998

NOTES 1 “Prolonging Life or Interrupting Dying? Opinions differ on Artificial Nutrition and Hydration”, Aquinas Institute, Spring 2004 newsletter. Available online at Aquinas Institute website at http://www.ai.edu
2 “Do Not Resuscitate” by Arthur Caplan and Dominic Sisti, Philadelphia Inquirer, April, 1, 2004. Available online at: http://www.philly.com/mld/inquirer/news/editorial/8324997.htm?1c (registration required) broken link 6/27/2005

3 “Prolonging Life or Interrupting Dying?”
4 “The Pope on PVS — Does JPII’s statement make the grade?” by Fr. John F. Tuohey, Commonweal, June 18, 2004.
5 “Pope’s feeding-tube declaration pits religion, medicine” by Virginia A. Smith, Philadelphia Inquirer, April 16, 2004. Available online at: http://www.philly.com/mld/inquirer/news/ nation/8442625.htm broken link 6/27/2005

6 “Australian ethicist Rethinks Position on ‘Vegetative State'”, Catholic News. Available online at: www.cathnews.com/news/ 407/57.php
7 “Considerations on the Scientific and Ethical Problems Related to Vegetative State”, Joint statement by the Pontifical Academy for Life and the World Federation of Catholic Medical Associations. Available online at: http://www.vegetativestate.org/documento_FIAMC.htm [link broken 12/3/2007]
8 Statement of the NCBC on Pope John Paul II’s Address on Nutrition and Hydration for Comatose Patients. Available online at: www.ncbcenter.org/press/04-04-23-NCBCStatementon NutritionandHydration.html
9 “John Paul II on the ‘Vegetative State'” by Richard M. Doerflinger, Ethics and Medics, June 2004, Vol. 29 No. 6. Available online at: www.ethicsandmedics.com/0406-2.html 10 “Pope declares feeding tubes a ‘moral obligation'” by Cathy Lynn Grossman, USA Today, 4/1/04. Available online at: http://www.usatoday.com/news/religion/2004-04-01-pope-usat_x.htm no longer available, 6/27/2005

11 Ibid.
12 “Persistent Vegetative State and Artificial Nutrition and Hydration: Questions and Answers”, Resources for Understanding the Pope’s Allocution on Persons in a Persistent Vegetative State. Online for CHA members on website www.chausa.org
13 Declaration on Euthanasia, Sacred Congregation for the Doctrine of the Faith, May 5, 1980. Available on the WFF web site at: www.wf-f.org/declarationoneuthanasia.html 14 “Nutrition and Hydration: Moral and Pastoral Reflections”, NCCB Committee for Pro-Life Activities, 1992. Available online at: www.usccb.org/prolife/issues/euthanas/nutindex.htm
15 Charter for Health Care Workers by the Pontifical Council for Pastoral Assistance to Health Care Workers, 1995. Available online at: www.wf-f.org/healthcarecharter.html
16 Ad limina address of the Holy Father to US Bishops of California, Nevada and Hawaii, October 2, 1998. Available online at: www.wf-f.org/JPII-Bishops-Life-Issues.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. She is based in St. Louis, MO.

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1996: NO BLANK BULLETS

No Blank Bullets

Commentary by Nancy Valko, RN

This was originally published in the January-March 1996 edition of the Patients Rights Council newsletter.

Commentary: No Blank Bullets: By Nancy Valko

Ready… aim… fire!

All the B-movie scenes I watched as a child flashed through my mind when I heard that a convicted murderer had been recently executed by firing squad. My visceral reaction was to cringe, instantly imagining the terror of being blindfolded and waiting for the bullets to hit. What I couldn’t imagine, though, were the feelings of being one of the men called to pick up and aim a piece of cold, hard steel at another human being. Would the man cope by pretending it was just another round of target practice? Would he try to remember the details of the murders and the tears of the victims’ families to muster the outrage that such crimes call for? What did he feel after the execution — sadness or satisfaction?

I was not surprised to later learn that one of the firing squad guns contained only blank bullets. In such circumstances, it is sensible to protect each executioner from the certain knowledge that he personally ended another’s life. In the more common lethal injection executions, the process is said to include at least two people and two buttons to start the process. Again, the procedure for legally terminating another life tries to protect those whom society asks to perform the awful task.

It is ironic, therefore, that society is considering the addition of yet another kind of execution to the legal list — assisted suicide — but this time without the blank bullets.

Few people would seriously consider legalizing relative– or family-assisted suicide. The inherent dangers of this type of private killing are much too obvious. Thus, the goal must be physician-assisted suicide or, more accurately, health care professional-assisted suicide, since nurses also must necessarily be involved when the assisted suicide occurs in a health facility or home health situation. We doctors and nurses are the ones society is now considering asking to perform the act of terminating lives, but unlike the firing squad or the lethal injection team, we will know and have to live with the certain knowledge that we caused death.

It is doubly ironic that when a convicted murderer tries to discourage efforts by lawyers to stop his or her execution, this is considered as a sign of stress or mental disorder, while a sick person’s willingness to die is considered an understandable and even courageous decision! How do we reconcile the two views that killing is the ultimate punishment for a convicted murderer and, at the same time, the ultimate blessing for an innocent dying or disabled person?

Both the American Medical Association and the American Nurses Association have recently issued strong statements against assisted suicide and euthanasia. While acknowledging the very real deficiencies too often found in care at the end of life, these organizations call for more education and access to help instead of the simple but dangerous option of killing terminally-ill or severely-disabled people or helping such people kill themselves. It is eminently logical that our concern for life should not be limited to just the curable.

And, although some polls show that a significant number of doctors and nurses, like the general public, say they could support assisted suicide in a hypothetical case, when faced with the realities and ramifications of legalizing the practice, most express deep concerns and fears regarding its implementation.

Society has long insisted that health care professionals adhere to the highest standards of ethics as a form of protection for society. The vulnerability of a sick person and the inability of society to monitor every health care decision or action are powerful motivators to enforce such standards. For thousands of years doctors (and nurses) have embraced the Hippocratic standard that “I will give no deadly medicine to any one, nor suggest any such counsel.” Should the bright line doctors and nurses themselves have drawn to separate killing from caring now be erased by legislators or judges?

As a nurse, I am willing to do anything for my patients — except kill them. In my work with the terminally ill, I have been struck by how rarely these people say something like, “I want to end my life.” And the few who do express such thoughts are visibly relieved when their concerns and fears are addressed and dealt with instead of finding support for the suicide option. I have yet to see such a patient go on to commit suicide.

This should not be surprising. Think about it. All of us have had at least fleeting thoughts of suicide in a time of crisis. Imagine how we would feel if we confided this to a close friend or relative who replied, “You’re right. I can’t see any other way out either.” Would we consider this reply as compassionate or, instead, desperately discouraging? The terminally-ill or disabled person is no different from the rest of us in this respect.

I often wonder if right-to-die supporters really expect us doctors and nurses to be able to assist the suicide of one patient and then go on to care for a similar patient who wants to live without this having an effect on our ethics or our empathy. Do they really want to risk more Jack Kevorkians setting their own standards of who should live and who should die?

The excuse that the only real issue is the patient’s choice would be cold comfort to us doctors and nurses when we have to go home and face the fact that we helped kill another human being or had to remain silently powerless while some of us legally participated. There will be no blank bullets then for us — or for society.

Nancy Valko, R.N., is an oncology nurse and the author of numerous articles on bioethical issues. She is also listed in the 1996-1997 edition of Who’s Who in American Nursing.

2013-2014 Voices: What do Pro-Lifers Really Do?

Voices Online Edition
Vol. XXVIII, No. 4
Christmastide 2013-2014

What do Pro-Lifers Really Do?

by Nancy Valko, RN

“Pro-life Groups Don’t Really Protect the Unborn,”1 blared the headline of an opinion article that appeared September 4, 2013 on the Yahoo news site. The author was Elizabeth Jahr, described as a senior at Marymount University in Arlington, Virginia, majoring in politics and theology and religious studies. Obviously, this Yahoo opinion piece, which also appeared in the Christian Science Monitor the same day, was especially aimed at young people.

Ms. Jahr states bluntly that “Religious and political groups that funnel tremendous resources into a legal war to limit and even ban abortion in America are at best, wasting time, and at worst, damaging efforts to protect the unborn.”

The comments that appeared on the Yahoo version of the article were outrageous — applauding the author for exposing people in the pro-life movement as politically aggressive morons.

This is stunning, especially when you consider that Planned Parenthood, the most visible face of abortion in the US, received 542.4 million taxpayer dollars in 2012 alone2 while nonprofit and volunteer groups like Birthright and Our Lady’s Inn here in St. Louis struggle to help countless women in crisis pregnancies and even after birth.

It is no accident that too many good people feel intimidated about expressing their pro-life beliefs, sometimes even with friends and family members. Ridicule, anger and scorn are difficult to handle but, as the old adage goes “All that is necessary for evil to triumph is for good men to do nothing.”

If any group ever needed a great publicity agent or public relations firm, it would certainly be the pro-life movement. However, the pro-life movement never has had the time, money, or inclination to burnish its image. People in the pro-life movement have been too busy saving lives and assisting the vulnerable to defend their work and motivations.

ONE OF THE GREATEST VOLUNTEER MOVEMENTS EVER

I consider myself a latecomer and draftee to the pro-life movement. I was a 23-year-old intensive care unit nurse when the Roe v. Wade decision came down. Like most people, I was shocked when abortion was legalized. I was vaguely aware of the Roe case, but, like most people I knew, I didn’t believe the case had a chance. Abortion was a nasty business only whispered about when I was growing up. As a medical professional, I couldn’t imagine good doctors and nurses condoning — much less participating in — such a brutal act. And I couldn’t imagine that Roe and its companion case Doe v. Bolton would extend abortion for the entire pregnancy.

However, I was professionally offended by the pro-life argument that legalizing abortion would lead to the legalization of infanticide and euthanasia. It was one thing to deny the truth with an early and unseen unborn baby but it was quite another to imagine any doctor or nurse looking a born human being in the eye and killing him or her. So I remained relatively silent but supportive except with people I knew well until almost 10 years later. It was 1982 when I found that my newborn daughter with Down syndrome almost became a victim of lethal medical discrimination because of the abortion mentality generated by Roe. I finally discovered the truth that the pro-life movement had predicted years before. It was then that I discovered that no group was fighting harder for people like my daughter as well as the inherent right to life of all of us than the growing pro-life movement.

What I found when I finally joined the pro-life movement was a large and diverse group of people committed to serving as well as saving the most vulnerable among us. I saw people who volunteered time and personal effort to ensuring that pregnant women had the resources to give birth and raise their children as well as find real help after the trauma of an abortion. Others were involved in programs assisting the poor and elderly. Some were caring for large families or ill family members themselves but still made the time to help in some way. To this day, I never met a pro-life person who was not involved in actively helping others. The pro-life movement is committed to people and principle, not politics.

PRO-LIFE LEGISLATION

I was also impressed by how much the pro-life movement was doing at the state and national level to legally protect the vulnerable as much as possible. Over the years, I saw pro-life laws — like informed consent, safety regulations for abortion clinics, the Born-Alive Infant Protection Act, laws against assisted suicide, etc. — proposed and even passed with great time and effort by pro-life people.

Although I was impressed with how much the pro-life movement was doing, I was initially discouraged to discover that even duly passed common sense pro-life laws are routinely held up — sometimes for years — by judges and special interest groups with deep pockets, like Planned Parenthood. For example, the widely supported Illinois parental notification law for minor girls was just now finally upheld after 18 years.3 Was it expensive? Yes! Was it worth the trouble? Of course. After all, pro-life legislation is educational for the public as well as protective for women and others at risk. Even when legislation fails, more and more people find out important truths about the abortion and euthanasia issues from the discussion.

Enforcement of these laws can be even more challenging. For example, the Born-Alive Infant Protection Act has been widely ignored.4 The Kermit Gosnell post-abortion killings show the wisdom of the Act and are now putting pressure on states and government officials.

CONCLUSION

After staying in the pro-life movement now for more than three decades, I recognize the argument that legalized abortion would lead to infanticide and euthanasia was absolutely true. As a nurse as well as a mother, I have been horrified to see the ever- increasing expansion of what we now call the Culture of Death to include the disabled, elderly, frail and seriously ill as well as the unborn.

But pro-life people are nothing if not resilient and creative.

With dedication and commitment, I have seen the pro-life movement increase in numbers and rise up to meet every new challenge to the right to life. I see smiling, positive people who refused to be permanently discouraged by setbacks or media stereotypes.

As a result of those initial efforts, today we see more and more abortion clinics closing (a record 44 so far this year!)5, waiting lists for adoption of babies with disabilities, few doctors and nurses jumping on the assisted suicide bandwagon, and other signs of progress. Despite the media hype and propaganda like Ms. Jahr’s article, the pro-life movement is alive, well, and growing.

And most importantly, hearts and minds are being opened and thus lives are being saved!
***
Notes

1 Elizabeth Jahr, “Pro-life groups don’t really protect the unborn.” September 4, 2013. Yahoo.com: http://www.csmonitor.com/Commentary/Opinion/2013/0904/Pro-life-groups-don-t-really-protect-the-unborn

2 American Life League’s STOPP International “Analysis of Planned Parenthood Federation of America Annual Report 2011-2012.” January 13, 2013: stopp.org/pdfs/2012/STOPP_PPFA_ 2011_2012_Final.pdf

3 Naomi Nix, “Illinois Supreme Court backs parental notification for abortions.” July 11, 2013. Chicago Tribune: articles. Online at: http://articles.chicagotribune.com/2013-07-11/news/chi-abortion-parental-notification-20130711_1_illinois-supreme-court-said-lorie-chaiten-parental-notification

4 Kathryn Jean Lopez, “How About Enforcing the Born-Alive Infant Protection Act?” May 15, 2013. The Corner at the National Review Online: nationalreview.com/corner/348430/how-about-enforcing-born-alive-infant-protection-act-kathryn-jean-lopez

5 Operation Rescue Staff, “Two more abortion clinics close: that makes 44 this year” LifeSiteNews.com. September 20, 2013. Online at: lifesitenews.com/news/two-abortion-clinic-closures-up-the-tally-to-44-this-year?utm_source=LifeSiteNews.com+ Daily+Newsletter& utm_campaign=83c2820b88-LifeSiteNews_ com_US_Full_Text_06_19_2013&utm_medium=email&utm_term=0_0caba610ac-83c2820b88-326224910
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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.

Voices copyright © 1999-Present Women for Faith & Family. All rights reserved.

2012 Voices: Right to Health Care, Duty to Die?

Voices Online Edition
Vol. XXVII, No. 3
Michaelmas 2012

Right to Health Care, Duty to Die?

by Nancy Valko, RN

I was a 23-year-old intensive care unit nurse when the US Supreme Court’s Roe v. Wade decision shockingly declared abortion legal. Nearly 40 years later I am still an ICU nurse, as the Patient Protection and Affordable Care Act (also known as the ACA, popularly known as Obamacare) has been shockingly declared legal as a tax by the Supreme Court.

The first Supreme Court decision ushered in the Culture of Death. Will the second decision establish it as a right?

THE PAST AS PROLOGUE

In 1973, the public was told that the Roe v. Wade decision just made abortion legal for the first three months of pregnancy and would save thousands of lives of women who foolishly but desperately sought out so-called back alley abortionists. The doctors and nurses I worked beside were surprised but hoped for the best. We were told that once abortion was out in the open, it would become easier to help these women have their babies. Abortion would only be a last resort. The real consequences came later.

Now we have Planned Parenthood clinics operating as politically correct abortion businesses, subsidized by hundreds of millions of taxpayer dollars every year. Articles about women seriously harmed or even dying from legal abortions rarely make even the local news.

Conscience rights for health care providers and religious organizations are being dismantled, most recently by the Obama administration’s Health and Human Services department mandating so-called free birth control including contraceptives, sterilizations, and abortifacients as “essential preventive health care” regardless of religious, moral, or even medical objections.

Reasoned dissent from the expanding abortion agenda is increasingly marginalized as “extremist” and an unconstitutional intrusion of religion. In 1973, such developments were unthinkable but if fertility and babies can now be characterized as “diseases” to be prevented, what can we expect regarding people with chronic illnesses, disabilities, old age, etc. following this latest Supreme Court ruling?

THE AFFORDABLE CARE ACT

During the 2010 battle to pass the Affordable Care Act, House speaker Nancy Pelosi (D-CA) made the notorious comment “We have to pass the bill so that you can find out what is in it.”

However, one of the biggest dangers may not lie in what the bill specifically states but rather its mechanism for setting up an unelected but powerful panel called the Independent Payment Advisory Board (IPAB), which, along with the existing United States Preventive Services Task Force and other government agencies, will strongly determine how health care will be distributed. But even before this latest panel takes effect, we are already beginning to see the effects of a utilitarian economic mindset on healthcare. “Living wills” and other advance directives are increasingly promoted as an effective way to reduce Medicare costs at the end of life. The impact of these panels and agencies will be enormous if and when the ACA takes full effect.

NURSING ECONOMIC$

Nursing is often cited the most trusted profession, even above doctors. I believe that this is due, at least in part, to the fact that we are not paid by the amount of care provided nor do we command enviable salaries. Traditionally, we are advocates for the individual patient regardless of age, socioeconomic status, etc. But with such great trust comes great responsibility. Whether or not we deserve this as nurses depends in large part on our education and motivation. Unfortunately, both are at greater risk than ever now as educational, legal, and cultural influences are undermining a profession of caring.

Recently, I had a startling glimpse into the possible future nightmare facing both healthcare and nursing when I read “How Can We Afford to Die?” the May-June 2012 issue of Nursing Economic$. (No, the “$” is not a typo but evidently a mindset.)

This influential nursing journal, written by nurse educators and others in health care policy positions, devoted the whole issue to death, dying, and cost containment. The agenda quickly became clear as the costs at the end of life were endlessly cited, but concerns about potential abuses were dismissed and conscience rights were not even mentioned in the six articles I read.

Note these quotes from an articled titled “End of Life Care in the United States: Current Reality and Future Promise”: “Health care professionals have an ethical responsibility to assist patients to achieve the care and life they want for their last days, and in many cases that may involve assisting them to die with dignity in a surrounding of their choice, and embraced by those they have loved for a life-time” (emphasis added); and from the conclusion “Simply put, we can begin to control the cost of end-of-life care and afford to die with dignity if we act today” (emphasis added).1

In another article titled “Quality in Life and Death: Can We Have the Conversations?”, Deborah B. Gardner PhD, RN enthusiastically cites polls purporting to show overwhelming public support for physician-assisted suicide and euthanasia, while apparently bemoaning a poll showing a majority of physicians against this. She dismisses the idea of a “slippery slope” with legalized euthanasia but ironically states that “To offer assisted dying effectively, it must be integrated into the practice of medicine” (emphasis added). Also disturbing in light of the Supreme Court decision, she also states that “As nurses, we participate in providing social justice through the delivery of health care” (emphasis added).2

In the editorial for this issue of Nursing Economic$, Donna M. Nickitas, PhD, RN says that “Nurses are well positioned to advocate for death with dignity” and unapologetically even advocates for “punitive reimbursement policies for excessive end-of-life treatments that only prolong life.”3

If enacted, such penalties will certainly intimidate many doctors regarding how aggressively to treat you if you are terminally ill, elderly, critically or chronically ill, or even potentially disabled.

This issue of Nursing Economic$ was given in conjunction with the Hospice-Palliative Care Action Plan presented at the Fifth Nursing Economic$ Summit “How Can We Afford to Die?” on June 6, 2012 in Washington, DC, in which an 8-point action plan was also presented. One of the points discussed the importance of getting everyone over the age of 18 to sign “living wills” and other advance directives. But this point had one interesting caveat: “if many patients have advance directives that make positive, cost-conscious systemic change impossible, most of the other efforts discussed as part of our action plan will go for naught”4 (emphasis added).

In other words, not choosing a potentially premature death can upset the economic imperative to reduce costs.

LOSS OF ETHICS AND CONSCIENCE RIGHTS

We are fast losing two of the most effective protections against an economics-obsessed, utilitarian health care system: traditional ethics and conscience rights. Without these two bulwarks, laws and regulations tend to follow the latest bias, pressure group, or opinion poll and ignore such basic human rights as life, religion, and freedom of speech.

When assisted suicide promoter Dr. Timothy Quill can become director of the American Academy of Hospice and Palliative Medicine5 — and our own United States government can by decree force Catholic institutions and other moral objectors to suddenly cover abortifacients and sterilizations — we must realize that we are already far down the road to an enforced Culture of Death that recognizes no bedrock principles or, in the end, even choice.

NOTES

1 “End-of-Life Care in the United States: Current Reality and Future Promise — A Policy Review” by Lisa A. Giovanni, MSN, RN. Nursing Economic$. May-June, 2012. Online: https://www.nursingeconomics.net/ce/2014/article3003127134.pdf

2 “Quality in Life and Death: Can We Have the Conversation?” by Deborah B. Gardner. Editorial. Nursing Economic$. pp 1-4. Summary online at: http://wedestr1302.pbworks.com/w/page/59237429/Roxie%20Summary

3 “The Dialogue about Death and Dying: It’s Time” by Donna M. Nickitas, PhD, RN, NEA-BC, CNE. Nursing Economic$, May-June 2012, Vol. 30/No.3. pp 122, 147. Online at: https://www.nursingeconomics.net/necfiles/specialissue/2012/editorial_Nickitas.pdf

4 “’Affordable’ Death in the United States: An Action Plan Based on Lessons Learned from the Nursing Economic$ Special Issue. Online at: nursingeconomics.net/necfiles/specialissue/2012/plan_Kovner.pdf

5 “Meet AAHPM President Timothy E. Quill, MD FACP FAAHPM”  AAHPM-Spring Quarterly. Online at: http://digitaleditions.walsworthprintgroup.com/article/Meet+AAHPM+President+Timothy+E.+Quill,+MD+FACP+FAAHPM/1010399/105036/article.html

Note: Dr. Quill was the respondent in the 1997 US Supreme Court case Vacco v. Quill challenging the ban on assisted suicide in New York, arguing that there is no difference between refusing lifesaving medical treatment and assisted suicide. The court ruled unanimously that there was no constitutional right to assisted suicide. Full disclosure: I was personally involved in writing the amicus brief for the National Association of Pro Life Nurses (nursesforlife.org) in this case.

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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.

Voices copyright © 1999-Present Women for Faith & Family. All rights reserved.

2012 Voices: Then and Now: The Descent of Ethics

Voices Online Edition
Vol. XXVII, No. 2
Pentecost 2012

Then and Now: The Descent of Ethics

by Nancy Valko, RN

I feel blessed to have grown up and become a nurse in the era of TV programs like Marcus Welby, MD, Ben Casey, and Medical Center. I couldn’t wait to be part of such a noble profession and I proudly recited the “Florence Nightingale Pledge,” the nursing equivalent of the Hippocratic Oath, at my graduation from a Catholic nursing school in 1969.

Written in 1893 and named in honor of nurse/hero Florence Nightingale, the pledge reads:

I solemnly pledge myself before God and in the presence of this assembly, to pass my life in purity and to practice my profession faithfully. I will abstain from whatever is deleterious and mischievous, and will not take or knowingly administer any harmful drug. I will do all in my power to maintain and elevate the standard of my profession, and will hold in confidence all personal matters committed to my keeping and all family affairs coming to my knowledge in the practice of my calling. With loyalty will I endeavor to aid the physician in his work, and devote myself to the welfare of those committed to my care.1

Forty-three years later, I still subscribe to those simple but powerful principles but the healthcare world around me has changed dramatically. On the plus side, I have witnessed the great advances in treating illnesses, pain, etc. However, on the minus side, I have witnessed an increasing rejection of traditional ethics that has turned the world I knew upside-down in so many ways. In 1969, I could never have imagined that the crime of abortion would be declared a constitutional right or that euthanasia in the guise of “physician assisted suicide” would become legal in any state. And could any of us ever have imagined a time when a US president would try to force even Catholic healthcare institutions into violating their conscience rights?

These changes did not happen overnight and neither were they the result of new scientific discoveries. The tragedy is that this all began with small, deliberate steps.

CONTRACEPTION AND ABORTION

In 1965, the American College of Obstetricians and Gynecologists (ACOG) redefined conception from the union of sperm and egg to “the implantation of a fertilized ovum,”2 allowing hormones — like those in the Pill — that can interfere with implantation to be classified as contraceptive rather than potentially abortifacient. Eventually, this opened the door not only to widespread acceptance of artificial contraception but also later developments such as abortifacient “morning after” pills, embryonic stem cell research, and in vitro fertilization (IVF).

Unsurprisingly, abortion itself was legalized a mere eight years after the ACOG redefinition of conception when the stage was already set for a pervasive contraceptive mentality making childbearing merely a “choice.” Now, we not only have abortion celebrated as a right but also infertile couples who want to adopt having to compete with same-sex couples for a smaller and smaller pool of available children to love and raise. Some desperate infertile couples resort to IVF, artificial insemination, or surrogate motherhood. Today, unborn babies themselves routinely have to pass “quality control” prenatal tests to escape abortion. And just recently, two parents won almost $3 million in a “wrongful birth” lawsuit because they claimed that they would have aborted their daughter with Down Syndrome if the prenatal tests had been accurate.3

Moreover, according to two ethicists writing in a recent article in the Journal of Medical Ethics, even a newborn without disabilities does not necessarily have any right to live. Ethicists Alberto Giubilini and Francesca Minerva baldly state that “what we call ‘after-birth abortion’ (killing a newborn) should be permissible in all the cases where abortion is, including cases where the newborn is not disabled.” This, they argue, should be permissible because, like a fetus, the newborn is only a “potential person.”4

ORGAN DONATION

In 1968, an ad hoc committee at Harvard Medical School issued a report defining a type of irreversible coma as a new criterion for death, stating that “[t]he burden is great on patients who suffer permanent loss of intellect, on their families, on the hospitals, and on those in need of hospital beds already occupied by these comatose patients” and the “[o]bsolete criteria for the definition of death can lead to controversy in obtaining organs for transplantation.”5

Since then, all 50 states have adopted laws adding brain death to the definition of death but each hospital can determine its own, often widely varying, criteria for what counts as brain death.

When brain death did not provide enough organ donations to transplant, some ethicists and doctors devised a new way of obtaining organs. Now, we have non-heart-beating organ donation (aka donation after cardiac death) for people who do not meet the brain death definition6 and doctors like Robert Truog, who argues that the traditional “dead donor rule” before organ transplantation should be eliminated in favor of taking organs from living patients on life support with “valid consent for both withdrawing treatment and organ donation.”7

In a final step, doctors in Belgium have already combined euthanasia with organ donation.8 Could this happen here? Just last year, the New York Times published an article from a death row inmate in Oregon arguing for the right to donate his organs after his own capital punishment by lethal injection, and started an organization promoting this for other prisoners.9

TTHE “RIGHT TO DIE” AND EUTHANASIA

The 1970s brought the invention of “living wills” and the Euthanasia Society of America changed its name to the Society for the Right to Die. The so-called “right to die” movement received a real boost when the parents of Karen Quinlan, a 21-year-old woman considered “vegetative” after a probable drug overdose, “won” the right to remove her ventilator with the support of many prominent Catholic theologians. Karen continued to live 10 more years with a feeding tube, much to the surprise and dismay of some ethicists. Shortly after the Quinlan case, California passed the first “living will” law.

Originally, “living wills” only covered refusal of life-sustaining treatment for imminently dying people. There was some suspicion about this allegedly innocuous document and, here in Missouri, “living will” legislation only passed when “right to die” advocates agreed to a provision exempting food and water from the kinds of treatment to be refused.

But, it wasn’t long before the parents of Missouri’s Nancy Cruzan, who was also said to be in a “vegetative” state, “won” the right to withdraw her feeding tube despite her not being terminally ill or even having a “living will.” The case was appealed to the US Supreme Court, which upheld Missouri law requiring “clear and convincing evidence” that Nancy Cruzan would want her feeding tube removed, but, in the end, a local judge allowed the feeding tube to be removed. Shortly after Nancy’s slow death from dehydration, Senators John Danforth and Patrick Moynihan proposed the Patient Self-Determination Act (never voted upon but became law under budget reconciliation), which required all institutions to offer all patients information on “living wills” and other advance directives. Since then, such directives evolved to include not only the so-called “vegetative” state and feeding tubes but virtually any other condition a person specifies as worse than death and any medical care considered life-sustaining when that person is deemed unable to communicate.

But has this choice become an illusion? The last several years have also seen the rise of so-called futility policies and even futility laws in Texas that can override patient or family decisions to continue treatment on the basis that doctors and/or ethicists know best.

In the early 1990s, Jack Kevorkian went public with his first assisted suicide and the “right to die” debate took yet another direction. By the end of the decade, Oregon became the first state to allow physician-assisted suicide. At first, the law was portrayed as necessary for terminally ill people with allegedly unrelievable pain. Within a short time, though, it was reported that “according to their physicians, the patients requested assistance with suicide because of concern about loss of autonomy and control of bodily functions, not because of concern about inadequate control of pain or financial loss.”10

In 2008, Washington became the next state to legalize assisted suicide and in 2009, Montana’s state Supreme Court declared that it was not against public policy for a doctor to assist the suicide of a competent terminally ill person. Relentless efforts to legalize assisted suicide in other states have failed so far, but many euthanasia proponents support terminal sedation as a stopgap alternative to assisted suicide for the present.11 Ominously, just last year assisted suicide activist and terminal sedation advocate Dr. Timothy Quill was named president-elect of the American Academy of Hospice and Palliative Medicine (AAHPM).

In just the last few months, popular health expert Dr. Mehmet Oz voiced his support for physician-assisted suicide on his TV show and Dr. Phil McGraw hosted a segment on his widely seen TV show featuring a Canadian woman who wanted her adult disabled children to die by lethal injection. Ironically, the mother, along with former Kevorkian lawyer Geoffrey Feiger, argued that removing their feeding tubes was an “inhumane” way to end the lives of the adult children. Tragically, when the studio audience was polled, 90% were in favor of lethal injections for the disabled adults.

THE CHALLENGE AHEAD

After 43 years, I don’t miss the starched nursing uniforms and glass IV bottles of my youth but I certainly do miss the idealism and ethical unity that I shared with my colleagues during that time.

Back then, Catholic nursing education like mine added a level of ministry to our efforts but, Catholic or not, we all shared the common goal of providing the very best health care for every patient regardless of age, socioeconomic status, or condition.

But now, in capitulation to the new ideal of “choice,” we doctors and nurses find ourselves ostracized from our professional organizations for being “politically incorrect” when we oppose abortion and stand up for discrimination-free medical care for the disabled. We are warned not be “judgmental” when a terminally ill person asks to die. At the same time, we see our conscience rights being legally dismantled with excuses such as “Doctors, nurses and pharmacists choose professions that put patients’ rights first. If they foresee that priority becoming problematic for them, they should choose another profession.”12

This did not happen overnight but rather by small and ever deepening steps. The result has not been a more compassionate and just society but rather a culture with a false sense of power and entitlement. We have been seduced into believing not only that we deserve control over having or not having children but also the degree of perfection of those chosen children. We think we deserve a life in which the seriously ill or disabled don’t financially or emotionally burden us. We think we deserve to decide when our own lives are not worth living, and have a right to be painlessly dispatched by a medical person. And we desperately but ultimately futilely want to believe that our actions and attitudes will not have terrible consequences.

It will take all of us openly and constantly challenging this culture of death to restore the traditional respect for life that protects all our lives.

Notes

1 American Nurses Association. Online at: http://nursingworld.org/FunctionalMenuCategories/AboutANA/WhereWeComeFrom/FlorenceNightingalePledge.aspx

2 American College of Obstetricians and Gynecologists Terminology Bulletin. Terms Used in Reference to the Fetus. No. 1. Philadelphia: Davis, September, 1965.

3 “Jury awards nearly $3 million to Portland-area couple in ‘wrongful birth’ lawsuit against Legacy Health” by Aimee Green. The Oregonian. Online at: http://www.oregonlive.com/portland/index.ssf/2012/03/jury_rules_in_portland-area_co.html

4 “Killing babies no different from abortion, experts say” by Stephen Adams. The Telegraph. February 29, 2012. Online at:

http://www.telegraph.co.uk/news/health/news/9113394/Killing-babies-no-different-from-abortion-experts-say.html

5 “A Definition of Irreversible Coma — Report of the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death, The Journal of The American Medical Association. August 1968. Excerpt jama.ama-assn.org/content/205/6/337.extract

6 “Death and the Organ Donor” by Nancy Valko, RN. Voices, Eastertide 2009. wf-f.org/09-01-Valko.html

7 “The dead donor rule: can it withstand critical scrutiny? By Miller FG, Truog RD, Brock DW. Journal of Medicine and Philosophy, 2010 Jun; 35(3):299-312. Online at:  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3916748/

8 “Initial Experience with Transplantation of Lungs Recovered from Donors after Euthanasia”. Applied Cardiopulmonary Pathophysiology 15: 38-48, 2011. applied-cardiopulmonary-pathophysiology.com/fileadmin/downloads/acp-2011-1_20110329/05_vanraemdonck.pdf

9 “Giving Life after Death Row” by Christian Longo. March 5, 2011. New York Times: Online at: http://www.nytimes.com/2011/03/06/opinion/06longo.html

10 “Legalized Physician-Assisted Suicide in Oregon — The Second Year” by Amy D. Sullivan, PhD, MPH, Katrina Hedberg, MD, MPH, and David W. Fleming, MD. The New England Journal of Medicine, 2000; 342:598-604 February 24, 2000. nejm.org/doi/full/10.1056/NEJM200002243420822

11 Timothy E. Quill, MD and Ira R. Byock, MD for the ACP-ASIM End-of-Life Care Consensus Panel, “Responding to Intractable Terminal Suffering: The Role of Terminal Sedation and Voluntary Refusal of Food and Fluids”, Annals of Internal Medicine. 2000; 132:408-414. Abstract: annals.org/content/132/5/408.abstract

12 “An Unconscionable Conscience Rule”, St. Louis Post-Dispatch editorial, December 24, 2008: stltoday.com/news/opinion/columns/the-platform/an-unconscionable-conscience-rule/article_8c777b41-d4f4-539c-bd82-2760fd738037.html

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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.

Voices copyright © 1999-Present Women for Faith & Family. All rights reserved

2011 Voices: Organ Donation: Crossing the Line: Linking the “right to die” with organ donation has opened a terrible Pandora’s Box

Voices Online Edition
Vol. XXVI, No. 4
Advent – Christmas 2011

Organ Donation: Crossing the Line: Linking the “right to die” with organ donation has opened a terrible Pandora’s Box

by Nancy Valko, RN

In the US, whether we are renewing our drivers’ licenses, watching the TV news or just picking up a newspaper, it’s impossible to miss the campaign to persuade us to sign an organ donation card. We see story after story about grieving relatives who have been comforted by donating a loved one’s organs after a tragic death, and grateful people whose lives have been changed by the “gift of life”. But in the understandable zeal to save or extend as many lives as possible through organ transplantation, are some ethical boundaries being crossed?

For example, since the early 1990s, a little-known but disturbing revolution has been occurring in organ donation. A new procedure now called “donation after cardiac death” (DCD) has been quietly added to brain death organ donation in more and more hospitals in the United States and in other countries. It was made possible by linking the so-called right to die with organ donation. Now, doctors in Belgium are using DCD criteria for determination of death to harvest organs after euthanasia.1

What is DCD?

In 1993, a whole issue of the Kennedy Institute of Ethics Journal2 was devoted to discussing a new pool of organ donors — patients who are not brain dead but who are on ventilators and considered hopeless in terms of survival or predicted “quality of life”. In these patients, the patient or family agreed to the withdrawal of life support and to a “do not resuscitate” order. The patient was then taken to an operating room where the ventilator was withdrawn. When (or if, see below) the breathing and heartbeat stopped within about one hour, doctors waited for usually two minutes before then pronouncing cardiac death rather than brain death. The patient’s organs were then harvested for transplant. At that time, this was called non-heart-beating organ donation (NHBD) but since then, some insisted that the term was confusing and the name morphed to donation after cardiac death (DCD). However, since hearts have now been transplanted and thus are obviously not dead, there is a current proposal3 to change the name to donation after circulatory death and keep the acronym DCD.

NHBD/DCD was unknown to the American public until 1997 when many viewers were shocked by a report on the influential US television show 60 Minutes that revealed little-known policies called NHBD at some hospitals that would allow taking organs for transplant from persons who could be, in narrator Mike Wallace’s words, “not quite dead”.

The 60 Minutes story explored the possibility that these NHBD policies were allowing doctors to discontinue life support, administer possibly harmful medications to some potentially salvageable patients, and harvest these patients’ organs for transplants using cardiac rather than brain death criteria. At the program’s end Wallace predicted that as a result of the broadcast the practice of NHBD (DCD) was unlikely to continue. But he was wrong.

INSTITUTE OF MEDICINE REPORTS ON ORGAN DONATION

This TV show caused a temporary firestorm of controversy, leading to a drop in organ donations and eliciting strong criticism of the 60 Minutes story by some transplant organizations. As a result, the Institute of Medicine (IOM) was asked to assess the NHBD/DCD policy. This resulted in two reports in 19974 and 20005 supporting NHBD/DCD with certain guidelines.

The first report did not condemn the practice but instead made recommendations such as waiting five minutes before harvesting organs after breathing and heartbeat stops. This report virtually extinguished media attention and public interest in the topic.

However, the second report showed that many — if not most — of the recommendations were not being routinely followed. The second IOM report even admitted that opinion was divided on the option of NHBD for the patient who is ventilator-dependent but conscious and who wants to stop life-sustaining treatment.

A later 2009 report, Controversies in the Determination of Death: A White Paper by the President’s Council on Bioethics,6 reexamined both brain death and NHBD/DCD and made many alarming discoveries about the practice of organ donation, such as wait intervals as short as 75 seconds before harvesting organs in some DCD cases. But in the end, both criteria for organ donation were supported and encouraged. Thus, controversies about organ donation have been virtually limited to bioethics and transplant groups — until recently.

ETHICAL PROBLEMS

However, in March 2011, the boundaries of NHBD/DCD organ donation were pushed even further by a proposal by the Organ Procurement and Transplantation Network (US) to mandate rule changes on DCD. Titled “Proposal to Update and Clarify Language in the DCD Model Elements. Affected/ Proposed Bylaw”,7 one important change would allow DCD for non-brain-injured patients on ventilators with “end-stage musculoskeletal disease, pulmonary disease or upper spinal cord injury” who consent to donation.

Gone is the requirement of an “assessment to determine whether death is likely to occur (after withdrawal of life support) within a timeframe necessary for organ donation” because “there is no industry standard that allows for a true assessment of the likelihood of death within a specific time frame. Each hospital establishes its own timeframe for organ acceptability.”8 These are just two of the proposed changes.

Although this proposal was open for public comment until June 2011, it went unnoticed until a September 19, 2011 Washington Post article, “Changes in controversial organ donation method stir fears”,9 was published and the controversy over NHBD/DCD erupted again.

But while ethicists quibble about technicalities with NHBD/DCD, crucial questions are not being raised: Is the “dead donor rule” that transplant experts are supposed to follow being corrupted by new determinations of death? How do doctors determine who is a “hopeless enough” patient who will die fast enough to get usable organs?

For example, at least 20% of NHBD/DCD donors do not die fast enough after withdrawal of a ventilator to have usable organs10 and are just returned to their rooms to die without further treatment. Doctors writing in the prestigious Journal of Intensive Care Medicine concluded that “There is little evidence to support that the DCD practice complies with the dead donor rule.”11 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.12

In addition, a determination of brain death that was the past standard for most organ donations is considered unnecessary for NHBD/DCD even though one of the strongest promoters of the DCD protocol, Dr. Michael DeVita, has admitted, “the possibility of [brain function] recovery exists for at least 15 minutes”. Nevertheless, Dr. DeVita defended waiting only two minutes before organ harvesting because he maintains that the person is unconscious and, as he writes, “the 2-minute time span probably fits with the layperson’s conception of how death ought to be determined”.13 In contrast, those of us with the responsibility to declare death are cautioned to take ample time in determining death even in hospice patients, lest death be declared too soon.

Additionally, a 2003 article in the New England Journal of Medicine illustrated a disturbing lack of objective medical standards for withdrawal of ventilators.14 This article admitted that no study was done to “validate physician predictions of patients’ future functional status and cognitive function”, and the researchers did not ask doctors to “justify their predictions of the likelihood of death or future function”.

With such subjective standards being used for withdrawal of ventilators, it should not be surprising that many potential NHBD/DCD procedures will not even result in a transplant because the patient will continue to breathe and have a heartbeat for longer than the usual one-hour time limit.

Most recently, an August 2011 article in the Internal Medicine News Digital Network15 cited a Canadian Medical Association Journal study on traumatic brain injury revealing that most of these patients’ deaths in ICU “stemmed directly from withdrawal of life-sustaining therapy, including 64 per cent of patients who died within three days of admission to an ICU” (emphasis added).

The authors of the study concluded: “Our study highlights the need for high-quality research to better inform decisions to stop life-sustaining treatments for these patients.” Such decisions could be a lethal mistake because these kinds of patients are often considered some of the best potential NHBD/DCD organ donors.

For example, a September 6, 2011 segment of US television’s Today show featured an interview with Shelli Eldredge, a young mother who was comatose after a traumatic brain injury from an accident in June.16 One doctor recommended stopping life support. Although Dr. Eldredge, Shelli’s husband, also believed it was medically impossible for her to recover from the brain injury, he wouldn’t give up. After a month, Mrs. Eldredge woke up and started speaking. Three months later, she was giving this interview — alert, articulate, and working toward a full recovery.

WHAT WE MUST DO

In 2003, the newspaper of the Archdiocese of St. Louis, the St. Louis Review, published an editorial17 calling for a moratorium and re-evaluation of NHBD/DCD for St. Louis hospitals, a recommendation widely criticized and then ignored. Now we have doctors in Belgium using lethal injections instead of withdrawing ventilators in NHBD/DCD protocols to harvest organs after euthanasia, and the Ethics Committee of Eurotransplant even formulating recommendations on organ donation after euthanasia.18

Linking the so-called right to die with organ donation, as NHBD/DCD does, has truly opened a terrible Pandora’s Box. Unfortunately, choice rather than principle is becoming the overriding ethic.

While organ donation can be a gift of life and a worthy goal, a civilized society must not allow the deaths of some people to be manipulated to obtain organs for others. We must demand transparency from organ transplant organizations and insist on public input for the protection of both the public and our health care systems. At the same time, we must also work tirelessly for universal laws against assisted suicide and euthanasia — before organ donation after euthanasia becomes yet another excuse for medically induced death.

References

1 “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

2 Kennedy Institute of Ethics Journal. Volume 3, Number 2, June 1993. Online at: http://muse.jhu.edu/journals/kennedy_institute_of_ethics_journal/toc/ken.3.2.html

3 “Proposal to Update and Clarify Language in the DCD Model Elements. Affected/Proposed Bylaw”. Online at: optn.transplant. hrsa.gov/PublicComment/pubcommentPropSub_283.pdf

4 Non-Heart-Beating Organ Transplantation: Medical and Ethical Issues in Procurement (1997), Institute of Medicine, National Academy Press. Available online at nap.edu/openbook.php?record_id=6036

5 Non-Heart-Beating Organ Transplantation: Practice and Protocols (2000), Institute of Medicine, National Academy Press. Available online at: nap.edu/openbook.php?isbn=0309066417

6 “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: bioethics.georgetown.edu/pcbe/reports/death/index.html

7 “Proposal to Update and Clarify Language in the DCD Model Elements. Affected/Proposed Bylaw”. Online at:

http://optn.transplant.hrsa.gov/PublicComment/pubcommentPropSub_283.pdf

8 Ibid.

9 “Changes in controversial organ donation method stir fears” by Rob Stein. Washington Post, September 19, 2011. Online at: washingtonpost.com/national/health-science/changes-in-controversial-organ-donation-method-stir-fears/2011/09/15/gIQAlY9agK_story.html

10 “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 jic.sagepub.com/cgi/reprint/23/5/303.pdf

11 Ibid.

12 “Is Organ Procurement Causing the Death of Patients?” by James Dubois, 18 Issues L. & Med. citations.duhaime.org/I/IssuesLMed.aspx 21 (2002-2003), cited in “Dead Donor Rule Definition”. Online at: duhaime.org/LegalDictionary/D/DeadDonorRule.aspx

13 “The Death Watch: Certifying Death Using Cardiac Criteria” by Michael A. DeVita, MD, University of Pittsburgh Medical Center, Pittsburgh, Pa. Prog. Transplant 11(1):58-66, 2001. © 2001 North American Transplant Coordinators Organization.

14 “Withdrawal of Mechanical Ventilation in Anticipation of Death in the Intensive Care Unit” by Deborah Cook, MD, et al. New England Journal of Medicine, Volume 349:1123-1132, September 18, 2003, Number 12. Abstract available online at: content.nejm.org/cgi/content/short/349/12/1123

15 “Support Withdrawal Causes Most Deaths after TBI (traumatic brain injury)” by Mary Ann Moon, Internal Medicine News Digital Network. August 29, 2011. Online at: internalmedicine news.com/news/neurology/single-article/support-withdrawal-causes-most-deaths-after-tbi/f3409f41da.html

16 “Mom defies the odds after devastating accident” by Lisa Flam. MSNBC.com online at: today.msnbc.msn.com/id/44408465/ns/today-today_health/t/mom-defies-odds-after-devastating-accident/

17 “Organ Donation and the Definition of Death”, St. Louis Review, May 23, 2003. Online at: wf-f.org/review-organdonation.html

18 Report of the Board and central office of Stichting Eurotransplant International Foundation. 1.5 Recommendations approved: Ethics Committee. In: Oosterlee A, Rahmel A, eds. Annual Report 2008 of the Eurotransplant International Foundation. Eurotransplant International Foundation, Leiden, the Netherlands, 2008. p. 24, cited as footnote 22 in “Initial Experience with Transplantation of lungs recovered from Donors after Euthanasia” by D. Van Raemdonck, et al. Applied Cardiopulmonary Pathophysiology 15:38-48, 2011. Online at: applied-cardiopulmonary-pathophysiology.com/fileadmin/downloads/acp-2011-1_20110329/05_vanraemdonck.pdf

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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.

2010 Voices: Ethics Committees: Are “Death Panels” Already Here?

Voices Online Edition
Vol. XXV, No. 1
Eastertide 2010

Ethics Committees: Are “Death Panels” Already Here?

by Nancy Valko, RN

Government tends to revolve around issues such as regulations, taxes, and spending for various programs. Medical ethics, on the other hand, is about caring for a patient’s health and well-being. It is not surprising then that when government economics and medical ethics collide in something as momentous as health-care reform, there is bound to be trouble. In the case of the recent US health-care-reform proposals, one of the most contentious issues has been the specter of “death panels” — government committees that have the power to decide whether we live or die.

I am no alarmist but especially as a nurse, I do believe there is cause for serious concern about the push for euthanasia “rights”, whether or not some form of health-care reform eventually passes. For example, Compassion and Choices (the newest incarnation of the pro-euthanasia Hemlock Society) boasted that it “has worked tirelessly with supportive members of congress to include in proposed reform legislation a provision requiring Medicare to cover patient consultation with their doctors about end-of-life choice”.1

“End-of-life” is a necessarily vague term that obscures the fact that we have had a sea change in medical ethics and law over the last few decades that has even led to the legalization of “assisted suicide” in three states. The end-of-life choice provisions turned out to be one of the biggest fuses detonating public opposition to the recent congressional proposals for health care reform.

In addition, although the idea of health-care rationing was dismissed as a myth when the current proposal for health-care reform was first made, we now have ethicists and even the mainstream media admitting that the rationing of health care is not only a present reality of health care economics2 but also a future means to provide basic care for all citizens. Government committees were proposed to set the rules for health-care services.

Is good, ethical health-care reform desirable or even possible? Of course. In 2003, I was privileged to serve on a Catholic Medical Association task force on health-care reform. Many good ideas — such as health-savings accounts, ways to help the uninsured poor, and strong conscience-rights protections — were discussed. The results were published in a 2004 report entitled “Health Care in America: A Catholic Proposal for Renewal”.3 While some of these ideas have had support in the US Congress, the Obama administration has rejected what I believe are some of the best proposals we and others have brought up.

ETHICS AND HEALTH CARE REFORM

Since I first started writing about medical ethics and serving on hospital ethics committees, I have seen ethics discussions evolve from “what is right?” to “what is legal?” to “how can we tweak the rules to get the result we think is best?” This attitude is not very reassuring when we are considering a massive overhaul of the US health-care system.

Former vice-presidential candidate Sarah Palin has been ridiculed for coining the term “death panels”. But it resonated with me. In 1983 my daughter Karen was born with Down syndrome and a severe heart defect. Even though Karen’s father and I were told that her chances for survival were 80 to 90 percent after open-heart surgery, we were also told that the doctors would support us if we refused surgery and “let” Karen die. We refused to allow such medical discrimination against our daughter.

Later on we were shocked to learn that one doctor had written a “do-not-resuscitate” order for Karen without our knowledge, because she thought I “was too emotionally involved with that retarded baby”.

In later years, I was asked if I was going to feed my mother, who had Alzheimer’s disease. And after my oldest daughter died by suicide from a drug overdose, I was told that it is usually a waste of time to try to save people who attempt suicide.

Did evil people say these things? No. These doctors and nurses were otherwise compassionate and caring health-care professionals. But they are just as vulnerable as the general public to the seductive myth that choosing death is better than living with terminal illness, a serious disability, or presumed poor “quality of life”.

If or when government committees and accountants take over health care, will we get — or even deserve — better than this?

COMMON SENSE AND ETHICS

Health care does not occur in a vacuum. Real people — patients, families and health care providers alike — are affected when economics and new ethical rationales trump basic needs. The Good Samaritan did not ask whether the man lying on the road had health insurance. The Hippocratic Oath established a sacred covenant between doctor and patient, not health-care rationing protocols. I strongly disagree with ethicists who contend that new technologies and economics demand new ethics.

I am tired of hearing some of my medical colleagues talk about patients who “need to die”. I am saddened to hear many of my elderly, frail patients fret about being an emotional and financial burden on their families. I am outraged when I read editorials arguing that those of us who refuse to participate in abortion or premature death should find another line of work.4

I recently attended a 40th-anniversary nursing-school reunion. We remarked on how much has changed. Some things are better — uniforms, equipment and technologies, for example. But some things are worse, especially ethics.

People are often surprised to learn that even back in the late 1960s, we had “do-not-resuscitate” orders, and spoke to families about forgoing aggressive medical treatment when patients seemed to be on the terminal trajectory to death.

But, unlike today, we did not then immediately ask the family members whether we could withdraw food, water, antibiotics, etc., to get the sick person’s death over with as soon as possible. Back then, we were often surprised and humbled when some patients recovered. Today, when doctors and nurses are too quick to give up hope, too many patients don’t even get a chance to recover.

In those days, medical ethics was easily understood. We would never intentionally cause or hasten death. We protected our patients’ privacy and rights. We were prohibited from lying or covering up mistakes. We assumed that everyone had “quality of life”; our mission was to improve it, not to judge it unworthy.

Medical treatment was withdrawn only when it became futile or excessively burdensome for the patient — not for society. Food and water was never referred to as “artificial”, even when it was delivered through a tube rather than from a spoon. Doctors and nurses knew that removing food and water from a non-dying person was as much euthanasia as a lethal injection.

“Vegetable” was a pejorative term that was never used in front of patients or their families. And suicide was a tragedy to be prevented, not an alleged constitutional right to be assisted by doctor and nurses.

But things are different today.

We now have ethics committees developing “futility guidelines” to overrule patients and/or their families even when they want treatment continued.

We have three states with legal assisted suicide and terminal sedation is supported by some ethicists as an already legal option for euthanasia in any state.

We have non-brain-dead organ-donation policies with some ethicists even arguing that we should drop the dead-donor rule.5

We are now asked to sign living wills and other advance directives with check-offs to eliminate even basic medical care for conditions such as being unable to regularly recognize relatives.

We are willing to sacrifice living human beings at the earliest stages of development to fund research for cures for conditions like Parkinson’s rather than promote research on ethical and effective adult-stem-cell-therapies.

We are inspired by the Special Olympics, but support abortion for birth defects.

We now talk about a newborn child as yet another carbon footprint instead of as a blessing and sacred responsibility.

I could go on and on but I think you get the idea. These are “death panels” already at work, even if we don’t call them that. And they have been created by apathy, misplaced sympathy, a skewed view of tolerance and an inordinate fear of a less-than-perfect life.

In the famous words of the comic strip character Pogo, “We have met the enemy and he is us”.

NOTES:
1 “Anti-Choice Extremists Mislead on End-Of-Life Conversation Provision in Health Care Reform”. Compassion and Choices. Monday, July 27, 2009. Online: compassionandchoices.org/blog/?p=445.

2 “In Delivering Care, More Isn’t Always Better, Experts Say” by Ceci Connolly. Washington Post, September 29, 2009. Online at:
washingtonpost.com/wp-dyn/content/article/2009/09/28/AR2009092803837_pf.html.

3 “Health Care in America: A Catholic Proposal for Renewal”. Statement of the Catholic Medical Association. September 2004. Available online at: http://cathmed.org/resources/position-papers/2004-statement-on-health-care-reform

4 “An Unconscionable Conscience Rule”. St. Louis Post-Dispatch editorial, December 24, 2008. Available online at: stltoday.com/ blogzone/the-platform/published-editorials/2008/12/an-unconscionable-conscience-rule/.

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

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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.
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