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.
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.
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.
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.
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.
Voices Online Edition
Vol. XVIII: No. 3 – Michaelmas 2003
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”.
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 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
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.
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 Online Edition — Vol. XXII, No. 3
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.
A Nurse’s View of Ethics and Health Care Legislation -Michaelmas 2009
As a nurse for 40 years, I have long been very concerned about the direction our health system has been taking. Now, I am becoming truly frightened by the significant changes that government’s proposed health care reform would cause.
I’ve read much of HR 32001, the 1000+-page proposed health care reform bill currently being pushed by the Obama administration and I agree with the critics who worry about potential taxpayer-funded abortion, rationing of care and promotion of the “right to die”. Like them, I am also concerned about a massive governmental overhaul of our health care at an exorbitant financial as well as moral cost.
Much of the bill’s language is murky legalese that is hard to understand. Much of the language is vague enough to allow all sorts of interpretations — and consequences. Worse yet, efforts to insert limits on such issues as taxpayer-funded abortion-on- demand so far have been rebuffed — or concealed in various ways. Government officials who advocate the proposed health- care-reform legislation are furiously trying to allay the fears of the increasing number of citizens who oppose the bill — but we have only to look at the statements and philosophy of the people supporting this bill to recognize potential dangers. Here are some examples:
— Compassion and Choices (the newest name for 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 (section 1233 of House Bill 3200).”2
— On abortion, President Barack Obama not only said “I remain committed to protecting a woman’s right to choose” on the January 22, 2009 anniversary of Roe v. Wade, but he also moved to rescind the recently strengthened federal conscience-rights protections for doctors and nurses who object to participating in abortion.
— On rationing: Dr. Ezekiel Emanuel, President Obama’s health care advisor, wrote in the January 2009 issue of the British medical journal Lancet about using a “complete lives system” to allocate “scarce medical interventions”. He wrote that “When implemented, the complete lives system produces a priority curve on which individuals aged between roughly 15 and 40 years get the most substantial chance, whereas the youngest and oldest people get chances that are attenuated.”3 Dr. Emanuel wrote a 2005 article on the Terri Schiavo case, bemoaning the low percentage of people signing “living wills” and other advance directives and stated, “Cases such as these also introduce economic issues, as the costs of keeping people alive — especially in the ICU — are substantial.”4
End-of-Life Issues a Major Concern
Just recently, a judge in Montana, acting alone, declared assisted suicide legal, making Montana the third state with legalized assisted suicide.5 Last year, cancer patient Barbara Wagner received a letter from the state-run Oregon Health Plan that denied coverage for an expensive drug for her recurrent lung cancer, but agreed to cover drugs for assisted suicide as “palliative” or comfort care that would cost around $50.6 This past July, a New York nurse sued her hospital after she allegedly was pressured into participating in a late-term abortion.7
Around the country there are instances where judges refuse to allow the implementation of state laws mandating parental notification, women’s right to know information and abortion clinic safety regulations.
Unfortunately, those of us who try to be ethical health-care professionals cannot turn to the mainstream national organizations like the American Medical Association (AMA) and the American Nurses Association (ANA) for help. I’ve been particularly alarmed that the ANA, like Planned Parenthood, is so vocal in its support of the newly proposed health-care-reform legislation.
Like most nurses, I do not belong to the ANA. Though I was formerly a member of ANA, and tried to work for change, I withdrew my membership when the ANA opposed the ban on partial- birth abortion. Since then, the ANA has also opposed strengthened conscience clause protections8 and supported the “right to die” in the Terri Schiavo case.9
As a nurse, I believe that not participating in abortion is a moral and natural imperative, not a “choice”. And also as a nurse, I’ve seen the effects of the “right-to-die” movement on health-care providers and their education over the years. Personally, I have become sick of hearing that this or that patient “needs to die” when the patient or family chooses not to withdraw basic care or treatment. Unfortunately, there are a lot of medical people and prominent ethicists who don’t really believe in free choice when it comes to the “right to die” and who actually do think some patients are a drain on the health care system and society. Not surprisingly, many of them also support direct euthanasia.
President Obama said in an April interview, “The chronically ill and those toward the end of their lives are accounting for potentially 80 percent of the total health care bill out here.”10
The present context of the moral and ethical issues makes it particularly worrisome for the proposed health-care-reform legislation’s plan to mandate “end-of-life counseling”.
Mounting concern about what is really involved in the administration’s health care reform proposals has met with unexpected resistance. It’s been amazing to watch the throngs of people of all ages making their voices heard at town hall meetings. I’ve been especially impressed by the older citizens. It seems that seniors who may once have told their children that they didn’t want to ever be a burden have now awakened to the realization that soon government-appointed ethicists may decide when a person is “too burdensome” to be allowed to live.
Some of the criticism of HR 3200 now seems to be finding its mark. Dr. Emmanuel, who at first maintained that critics were taking quotes from his writings out of context, now says that his views have “evolved”, and that he no longer supports health care rationing.11 And Iowa Senator Chuck Grassley now says, regarding the upcoming Senate version of health care reform, “We dropped end-of-life provisions from consideration entirely because of the way they could be misinterpreted and implemented incorrectly.”12
These are hopeful developments — much, much more is necessary. The architects of what is now often termed “Obamacare” are still determined to win passage of a comprehensive health- care bill, and pro-abortion groups demand unlimited abortion coverage. Politicians’ continued reassurances are most often mere repackaging of bad ideas. Influential ethicists who support abortion and the “right to die” can be expected to resist opposition as vigorously as ever.
Good Health-Care Reform
Of course, we must continue to be serious about making health care better, especially when it comes to the moral and ethical foundation of our health-care system. It can be done.
A few years ago, I was privileged to serve on a Catholic Medical Association task force on health-care reform. Many great ideas, such as health-savings accounts, ways to help the uninsured poor, and better conscience-rights protections, were developed and published in a 2004 report entitled “Health Care in America: A Catholic Proposal for Renewal”.13 Some of these ideas already have support in Congress.
In early August, the National Association of Pro-life Nurses (NAPN), of which I am a member, issued a statement of guiding principles necessary for any ethical health care reform (see sidebar).14
Many of our bishops have been addressing these crucial issues, as well. The US Conference of Catholic Bishops has a Health Care Reform web section to provide information, action alerts, statistics, statements and other resources (www.usccb.org/ healthcare/).
As I write this in August 2009, the future of HR 3200 and the government’s proposed reform of health care in general are still in dispute, as voting was delayed until after the August recess of the US Congress. The proposal may well be changed before a vote is taken. What is indisputable is that all citizens need to be informed and especially to be heard on this crucial issue that affects all of us.
Position Statement on Health Care Legislation of the National Association of Pro-life Nurses
Because proposed health-care legislation affects those of us in the nursing profession directly, the National Association of Pro-life Nurses issues the following guidelines to be included in any approved proposal.
• The bill must not include any mandate for abortion
• Abortion funding prohibitions must be included to reflect long-standing bans in place
• State laws regulating abortion must be upheld
• There must be protection of the conscience rights of health care workers, and
• Any plan adopted must include full prenatal and delivery care for all pregnancies.
In addition, we are opposed to mandating end-of-life consultation for anyone regardless of age or condition because of the message it sends that they are no longer of value to society. Such consults place pressure on the individual or guardian to opt for requests for measures to end their lives.
We believe those lives and ALL lives are valuable and to be respected and cared for to the best of our abilities. Care must be provided for any human being in need of care regardless of disability or level of function or dependence on others in accordance with the 1999 Supreme Court decision in the Olmstead v. L. C. Decision.
Adopted by the Board of Directors
August 3, 2009
On 25 Years of Women for Faith & Family
Twenty-five years ago, militant feminism seemed to be taking over our culture, and WFF started as a small beacon of light for Catholic women struggling to live their faith in an increasingly callous and dispiriting society. Today we are growing in numbers, stronger and better able to bring God’s message of hope and love to all through an organization of dedicated and devout women.
Congratulations to Women for Faith & Family for 25 great years! I am both proud and humbly inspired to be part of the WFF family!
2 “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.
3 “Principles for allocation of scarce medical interventions” by Govind Persad BS, Alan Werthheimer PhD, Ezekiel J Emanuel MD, The Lancet, Volume 373, Issue 9661, Pages 423-431, January 31, 2009. Available online: www.thelancet.com/journals/lancet/article/PIIS0140-6736(09)60137-9/fulltext.
4 “The Prognosis for Changes in End-Of-Life Care after the Schiavo Case” by Lindsay A. Hampson and Ezekiel J. Emanuel. Health Affairs, 24, no. 4 (2005): 972-975. Online: content.healthaffairs.org/cgi/content/full/24/4/972.
5 “Montana judge rejects stay of physician-assisted suicide ruling” by Kevin B. O’Reilly. AMNews. January 29, 2009. Online: www.ama-assn.org/amednews/2009/01/26/prsd0129.htm.
6 “Death Drugs Cause Uproar in Oregon: Terminally Ill Denied Drugs for Life, But Can Opt for Suicide”, by Susan Donaldson James. ABC News. August 6, 2008. Online: abcnews.go.com/Health/story?id=5517492&page=1.
7 “Nurse ‘Forced’ to Help Abort — Faith Objector Sues Mt. Sinai” by Kathianne Boniello. New York Post. July 26, 2009. Available online: www.nypost.com/seven/07262009/news/regionalnews/nurse_forced_to_help_abort_181426.htm.
8 “Bush-Era Provider Conscience Act Rules Under Scrutiny” by Cathryn Domrose. August 3, 2009. Nurse.com. Available online: news.nurse.com/article/20090803/NATIONAL01/108030001/-1/frontpage
9 American Nurses Association Statement on the Terri Schiavo Case. American Nurses Association. March 23, 2005. Available online: nursingworld.org/FunctionalMenuCategories/MediaResources/PressReleases/2005/pr03238523.aspx.
10 “Obama Says Grandmother’s Hip Replacement Raises Cost Questions” by Hans Nichols. April 29, 2009. Bloomberg Press. Available online at: www.bloomberg.com/apps/news?pid=20601070&sid=aGrKbfWkzTqc.
11 “Palin target renounces care rationing” by Jon Ward. Washington Times. August 14, 2009. Online: www.washtimes.com/news/2009/aug/14/white-house-adviser-backs-off-rationing/print/.
12 “Grassley: End-of-life care concerns, other concerns in House health care legislation”. Press release by Senator Chuck Grassley of Iowa, August 13, 2009. Online: grassley.senate.gov/news/Article.cfm?customel_dataPageID_1502=22465.
13 “Health Care in America: A Catholic Proposal for Renewal”. Statement of the Catholic Medical Association. September 2004. Available online at: http://www.cathmed.org/assets/files/CMA%20Healthcare%20Task%20Force%20Statement%209.04%20Website.pdf
14 Position Statement of the National Association of Pro-life Nurses on Health Care Legislation. August 3, 2009. Available online at: www.nursesforlife.org/napnstatement.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.
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
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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Do hospitals give up on severely impaired patients too soon?
By Sandy Caspersen And Nancy Valko
Editor’s note: Following an operation in March 2000 to relieve pressure on the brain brought on by a cyst, Steven G. Becker, 28, of suburban St. Louis, was diagnosed as being in a “persistent vegetative state”. In late May, Becker’s wife, the attending physician, and St. John’s Mercy Medical Center decided to end assisted nutrition and hydration (administration of food and water by feeding tube). Becker’s mother sued to stay that decision and to require continued health care. A hearing on the matter is scheduled in mid-September.
Nancy Valko, R.N., was contacted by Sandy Caspersen, the aunt of Steven Becker, and together they wrote the editorial below which appeared in the St. Louis Post-Dispatch. At the demand of the Commentary Page editor, they deleted all references to Catholicism (“too narrow”). The Post-Dispatch “balanced” this pro-life editorial by another by Father Kevin O’Rourke, an influential St. Louis ethicist who gained national prominence in the Nancy Cruzan case, in support of her parents who wanted their daughter’s food and water discontinued. Father O’Rourke opposes continuing nutrition and hydration for disabled patients who seem unlikely to recover full “cognitive function”. In his view, food and water delivered by feeding tube is not “ordinary care” that we are obliged to give every disabled patient, even if full recovery seems dim.
THERE are many ways to kill a sick or disabled person. Removing food and water is only one.
Since Steven Becker’s March operation to relieve pressure on his brain, discussion has revolved around eliminating food and water, provided through a tube into his digestive tract. This medically assisted food and water was correctly called “comfort care” in records at St. John’s Mercy Medical Center before the decision was made to end his life. Now the hospital — as well as the media — calls it “life support”.
But St. John’s and its ethics committee have also decreed that other treatments — antibiotics, other beneficial medications, physical therapy and a possible operation to correct his now-infected brain shunt — can also be denied to Becker even though the legal process is still proceeding.
Becker has been deemed by his doctors to be in a “permanent vegetative state”, defined as “awake but (assumed) unaware”. That diagnosis is disputed by at least one other doctor. But pain medications and muscle relaxants, which can cause sedation, are among the few treatments that may be provided. Why would a supposedly unresponsive person even need pain medication?
With the kind of “death ethics” mentality promulgated by the hospital’s ethics committee, it isn’t surprising that even Becker’s hygiene has suffered. When family members have offered to help by bathing him themselves during their visits, their requests for washcloths were unmet, and family members now bring their own.
It is outrageous that St. John’s ethics committee can sanction the denial of beneficial treatment, which had helped Becker progress and fight infection, while continuing Becker’s feedings until a September hearing only because of a court order.
Is this where the “right to die” has brought us?
Becker’s case must be setting a speed record for such public cases, but this ignores the studies and news reports showing that many severely brain-injured people eventually recover — sometimes even fully recover — with time and treatment.
Some members of the family asked for this time for Becker. However, the ethics committee decided that he would not make a good enough recovery. Becker’s wife, Christie, has accepted its recommendations to end his life. Other family members were then offered similar counseling to induce them to accept the recommendations and thus avoid controversy, but they resisted. Now Becker’s fate will be decided by a judge.
Becker never chose this situation. He had taken courses toward a possible career as a nurse. The court-appointed guardian’s report stated that because he was medically sophisticated enough to understand ethical dilemmas and had allegedly made comments that he wouldn’t want to live like people in other public “right to die” cases, this constituted “clear and convincing” evidence that he would rather die than potentially live with severe disabilities. However, some members of his family say that, even after he had consulted with a neurosurgeon and knew brain surgery was being considered, he adamantly refused to sign a living will or other advance directive. If he had signed such a directive, this would have made his wishes known about refusing treatment if he were unable to speak for himself.
Becker’s wife supposedly disputes this incident now, but the fact remains (and the hospital record proves) that he did not sign an advance directive, which the law required he be offered. This should confirm that he did not choose to refuse treatment even though he was aware of the possibilities. This refusal is his last known health-care decision, so why should alleged comments from years ago be considered more persuasive?
What does it take to refuse the “right to die”? We all should be asking this question.
With the push to contain costs, coupled with multi-million-dollar malpractice suits when a person survives but is disabled, we must also be alert to an inherent conflict of interest when a hospital’s ethics committee urges withdrawing or limiting necessary care. Also, doctors and nurses have the right and the responsibility to resist a “death ethics” mentality and protect their most vulnerable patients who cannot defend themselves due to age, disability or mental impairment.
Steven Becker isn’t the first person to face death by denial of basic care — despite refusing to sign a living will or other advance directive.
But, please, let him be the last.
Editor’s note: for a follow-up on Steven Becker’s story, see “A Lethal Evolution”.
The case against: an experienced nurse worries that Obamacare will entrench an existing quality-of-life ethic.
Nancy Valko | Nov 12 2009 | comment
Medical ethics are concerned with care for a patient’s welfare, something huge institutions are not very good at. The controversy about “death panels” in proposed health care reform legislation is to be expected. As a nurse, despite all the soothing noises from the Obama administration, I do believe there is cause for serious concern.
For example, Compassion and Choices (the name of the pro-euthanasia Hemlock Society after its merger with another “right to die” group) 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.”
“End-of-life choice” might have been an innocent term a generation ago, but now in three American states “end-of-life choice” includes legal assisted suicide. No wonder people were worried when they read these words in HR 3962 (also known as the Pelosi bill). It even includes a whole section on “Dissemination of Advance Care Planning Information” that is problematic and misleading.
In addition, although the idea of health care rationing was originally dismissed as a myth, ethicists and the mainstream media admit that health care rationing is necessary. Government committees have been proposed to set rules for health care services.
Is ethical health care reform needed? 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”. The Obama Administration has rejected most of these proposals.
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 without our knowledge. Apparently he thought I “was too emotionally involved with that retarded baby”.
In later years, I was asked if I was going to feed my mother with Alzheimer’s. And then, after my oldest daughter died from an apparently deliberate drug overdose, I was told that it is usually a waste of time to save suicide attempters.
Did evil people say these things? No. These doctors and nurses were otherwise compassionate, 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, serious disability or poor “quality of life”.
When government committees and accountants take over health care, will things get better?
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.
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 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 immediately ask them whether we could withdraw food, water and antibiotics to get the death over with as soon as possible. Back then, we were often surprised and humbled when some patients recovered. Today, too many patients don’t even get a chance. Doctors and nurses are too quick to give up hope.
Back then, ethics was easily understood. We didn’t ever 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 judge it.
Medical treatment was withdrawn 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. Doctor 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.
Today we 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. We have even non-brain dead organ donation policies (called non-heartbeating organ donation or donation after cardiac death). Some ethicists even argue that we should drop the dead donor rule.
We see living wills and other advance directives with check-offs for even basic medical care and for incapacitated conditions like 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 another carbon footprint instead of as a blessing and sacred responsibility.
I could go on and on but I think you get the idea.
Death panels are not the overwrought fantasy of right-wing nut cases. Real “death panels” are already at work. They have been created by apathy, misplaced sympathy, a skewed view of tolerance and an inordinate fear of a less than perfect life. Death panels? In the famous words of the comic strip character Pogo, “We have met the enemy and he is us.”
Nancy Valko is president of Missouri Nurses for Life and a spokeswoman for the National Association of Pro-life Nurses.