Voices 2009: A Nurse’s View of Ethics and Health Care Legislation

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!


Notes

1 H.R. 3200 – America’s Affordable Health Choices Act of 2009, available online at: www.opencongress.org/bill/111-h3200/text or www.govtrack.us/congress/bill.xpd?bill=h111-3200.

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.

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

Voices Online Edition Vol. XIX No. 3 Michaelmas 2004

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

 

by Nancy Valko, RN

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

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

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

Pope John Paul II, March 20, 2004

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 Because traditional ethics held that medical treatment could be withheld or withdrawn if it was futile or excessively burdensome, there were few objections to such a document and state legislatures started passing laws giving legal status to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

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

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

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

Pope’s Address on “Vegetative State” Surprises Many

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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September 2000: Do Hospitals Give Up on Severely Impaired Patients Too Soon?

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”.

Nancy Valko is president of Missouri Nurses for Life, and writes “Bioethics Watch” for Women for Faith & Family. (The above editorial is reprinted with the permission of the author.)

“Non-heart beating organ donation” and the “vegetative state”

 

 

Editor’s Note: The following was presented by Dr. George Isajiw to the participants in the International Congress on “Life-Sustaining Treatments and Vegetative State: Scientific Advances and Ethical Dilemmas”, held in Rome March 17-20, 2004. To read the text of the Holy Father’s address to the Congress, click here. Since this article was published in 2004, non-heartbeating organ donation (NHBD) has been renamed donation by ethicists and organ transplant organization as” death after cardiac or circulatory death (DCD)”  but the issues remain the same.

By George Isajiw, M.D. and Nancy Valko, RN

On May 23, 2003, the newspaper of the Archdiocese of St. Louis, the St. Louis Review, published an editorial stating that “the NHBD (non-heart beating organ donation) protocol is cruel and dangerous and does not meet standards of respect for human life” and called for an immediate moratorium on NHBD at all St. Louis hospitals.

Reaction was swift and critical. The St. Louis Post-Dispatch cited transplant surgeons and others who defended NHBD as a way to increase organ donations by taking organs from patients who “have little brain activity and are in a vegetative state with no hope of recovery and whose families decide to discontinue life support.1 Michael Panicola, vice president of ethics for the Catholic SSM Healthcare System, defended NHBD as “an opportunity for people to give the gift of life when they don’t meet brain death criteria.”

FACTS ABOUT NON-HEART BEATING ORGAN DONATION
For the past several years, a little-known but disturbing revolution has been occurring in organ donation. In the understandable but sometimes alarming zeal to obtain more organs, a new procedure called “non-heart-beating organ donation” has been quietly added to brain death organ donation in more and more hospitals in the United States and in other countries.2

Here, we are referring only to so-called “controlled NHBD protocols, although the “uncontrolled NHBD protocols, which are used for patients who have failed resuscitation efforts, have their own set of ethical problems which overlap with “controlled” NHBD, such as cannulation for preservation of organs before consent can be obtained.

While brain death organ donation means that the person is legally dead but still has a heartbeat when organs are harvested, the potential NHBD patient does not meet the brain death criteria but is termed “hopeless” or “vegetative” soon after suffering a devastating condition such as a severe stroke or trauma, and while still needing a ventilator to breathe. Because of the legal acceptance of the so-called “right to die”, families or other surrogates then agree to have the ventilator turned off, a “do not resuscitate” order is written, and when the patient’s breathing and heartbeat stops, the organs are removed.

In NHBD, the ventilator is usually stopped in an operating room while a doctor watches for up to one hour until the heartbeat and breathing stops. After an interval of usually just 2 to 5 minutes, the patient is declared dead and the transplant team takes over to remove the organs. A determination of brain death is considered unnecessary even though one of the inventors of the NHBD protocol, Dr. Michael DeVita has admitted, “the possibility of [brain function] recovery exists for at least 15 minutes”. Nonetheless, Dr. DeVita defends waiting only 2 minutes before harvesting the organs because he believes that the person is unconscious and, as he writes, “the 2-minute time span probably fits with the layperson’s conception of how death ought to be determined”.3

A recent article in the New England Journal of Medicine illustrates the disturbing lack of objective medical standards for withdrawal of ventilators.4 This article, published in September of 2003, admits that no study was done to “validate physicians’ predictions of patients, future functional status and cognitive function”, and the researchers did not ask doctors to ”justify their predictions of the likelihood of death or future function”.

With such subjective standards being used for withdrawal of ventilators, it should not be surprising that the potential NHBD patient will unexpectedly continue to breathe for longer than the usual one hour time limit required for the organ transplant to be successful. In these cases of failed NHBD, the transplant is then cancelled but, rather than resuming care, the patient is just returned to his or her room to eventually die without any treatment or further life support.

The recent case of Jason Childress illustrates the lethal problems with this non-treatment plan and the lack of objective medical or ethical standards for withdrawing ventilators.5

Jason is a young man who was severely brain-injured in a car accident and became the subject of a “right to die” case in which the judge ordered the removal of his ventilator 2 months after his accident. Against all predictions and because his tube feedings were not also stopped, Jason continued to breathe on his own and is now showing signs of improvement and receiving treatment. Ominously, the doctors, initial recommendation to withdraw the ventilator 2 days after his accident could have made him a prime candidate for NHBD since he would have possibly been too injured to breathe on his own that soon after his accident. The rush to declare patients “hopeless or “vegetative soon after illness or injury can thus deprive at least some patients of the chance of survival or even recovery.6

Some NHBD protocols do not even require that the donor be mentally impaired at all. For example, one ethicist wrote about the case of a fully conscious man with ALS who decided to check himself into a hospital, have his ventilator removed and donated his organs under NHBD criteria. The ethicist wrote, “An operating room nurse reported feeling that the procedure was ‘Kevorkian-like'”.7

CONCLUSION
Even more pressure to increase the use of NHBD is apparently coming in the US, even though the public has been kept largely uninformed about this new method of obtaining organs. For example, last November, an advisory committee to the US Health and Human Services department recommended that, in the future, all hospitals should establish policies and procedures to “manage and maximize” NHBD and also be required to “notify organ procurement organizations prior to the withdrawal of life support to a patient, so as to determine that patient’s potential for organ donation”8. Unknown to most of the public, hospitals are now already required to report every death to the local transplant organization even when tissue or organ donation is refused and, if enacted, this new proposal will put further pressure on medical personnel and distraught families.

Ironically, at the same time, new information is coming forward about these so-called “hopeless” patients who are considered potential NHBD candidates. A September 2003 article in the New York Times featured the work of Dr. Joseph T. Giacino and others with people who have had severe brain damage but who are now showing signs of “complex mental activity even after months or years with little sign of consciousness”.9 And, of course, there are many reported cases even in the media of brain-injured people who improve or even recover long after the doctors declared them hopeless.

Yet, even this may not be enough for some ethicists like Dr. Robert Truog, who recently proposed that “individuals who desire to donate their organs and who are either neurologically devastated or imminently dying should be allowed to donate their organs, without first being declared dead.”10 In other words, Dr. Truog wants to eliminate even the controversial NHBD protocol in favor of just taking organs from incapacitated or dying patients while they are obviously still alive.

Linking the so-called “right to die” with organ donation, as NHBD does, has truly opened a terrible Pandora’s box. While organ donation can be a gift of life and a worthy goal, we must not allow the deaths of some people to be manipulated to obtain organs for others. The position of Cardinal Justin Rigali, now Archbishop of Philadelphia, who was at that time the Archbishop of St. Louis and who asked for an immediate moratorium and re-evaluation of NHBD, is eminently sensible and should be replicated worldwide.

================================================================

NOTES

[1] “Archdiocese criticizes some organ retrievals” by Deborah L. Shelton, St. Louis Post-Dispatch, 6/10/03.

[2] “It is difficult to determine whether other countries such as Holland and Japan adopt a uniform defensible template in their practice of controlled NHBOD and information from the UK is also extremely limited as to the extent and nature of practice”. From “Non-heart beating organ donation: old procurement strategy” new ethical problems by M. D. Bell, Journal of Medical Ethics 2003; 29:176-181. Online at:

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

[4] “Withdrawal of Mechanical Ventilation in Anticipation of Death in the Intensive Care Unit” by Deborah Cook, M.D., et al. New England Journal of Medicine, Volume 349:1123-1132, September 18, 2003, Number 12.

[5] “Jason Childress Still Breathing, Receives Proper Medical Care” by Steven Ertelt, LifeNews.com Editor, September 25, 2003. :

[6] “Ethical Implication of Non-Heart Beating Organ Donation” by Nancy Valko, RN. Voices magazine, Michaelmas 2002 Volume XVII, No. 3.

[7] A Primer for Health Care Ethics by Kevin O’Rourke, O.P., Georgetown University Press, 2000, p. 182

[8] US Department of Health and Human Services Advisory Committee on Organ Transplantation, Recommendations to the Secretary. November 2002. Recommendation 14

[9] “What if There Is Something Going On in There?” by Carl Zimmer. New York Times, 9/28/03

[10] “Role of brain death and the dead-donor rule in the ethics of organ transplantation” by Robert D. Truog, MD, FCCM; Walter M. Robinson, MD, MPH. Critical Care Medicine Journal, September 2003; 31(9):2391-2396

George Isajiw, M.D., is based in Washington, DC, and is Internal Medicine Consultant to the Linacre Institute of the Catholic Medical Association. He is also past president of the Catholic Medical Association, USA. His 2002 paper “Advance ‘Mis-Directives’: Euthanasia in Catholic Hospitals in the United States” appears here.

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

2008 Voices: Was Zack Dunlap’s Recovery a Miracle?

Voices Online Edition
Vol. XXIII, No. 2
Pentecost 2008

Was Zack Dunlap’s Recovery a Miracle?

As Easter arrived, NBC’s news show Dateline breathlessly ran a story1 about a teenage boy declared “brain dead” who nevertheless began to recover just hours before his organs were scheduled to be harvested.

Last November, 21-year-old Zack Dunlap was declared dead 36 hours after flipping his 4-wheeler ATV. Official word of his death was even reported to Oklahoma authorities. The parents were told that their son was brain dead and they knew he had signed an organ donor card. After seeing a brain scan apparently showing no blood flow to his brain, the parents agreed to donate his organs.

However, Zack jerked his foot when a nurse ran a sharp object up the bottom of his foot. Although skeptical at first, soon even the doctors agreed that he was showing purposeful movement and the organ removal was cancelled. Five weeks later, Zack was transferred to the Jim Thorpe Rehabilitation Hospital in Oklahoma City.

Today, just four months later, it is almost impossible to tell that Zack ever had an accident, much less a catastrophic one. He speaks clearly, walks without assistance and is planning to go back to work. He now insists that that he heard a doctor say he was dead and that this “just made me mad inside”.

During the broadcast of this amazing story, much was made of Zack’s grandmother’s prayer for a miracle. Zack’s doctors continue to insist that no mistakes were made in Zack’s diagnosis of brain death and the parents agreed, saying “There’s no blame in a miracle.”

So have we indeed witnessed a replay of the Lazarus miracle? Probably not.

THE TRUTH BEHIND MOST MIRACLES

I fervently believe in the enormous power of prayer. I believe that God can and still does perform miracles but even when recovery doesn’t happen or is less than desired, prayer always helps.

As a nurse, I have seen many amazing recoveries over the years, ranging from the purely physical to the deeply spiritual. Intense prayer has accompanied many of these recoveries, but some, to my knowledge, have not. Of course, people like my paternal grandmother have made a habit of praying for anyone who most needed prayer, but I know from personal experience that there are no special words or prayers guaranteed to make a recovery happen. In the end, we always have to trust God.

But there is a larger issue: Are we conferring too much similar trust in the wisdom of the medical and ethical establishments?

It is ironic that true miracles such as the Resurrection and those verified at Lourdes are often dismissed as fake by the scientific establishment, but recoveries such as Zack’s are routinely seen as “miraculous” rather than as problems that need rigorous scrutiny or even opportunities to learn more.

Countless times over the years, I have seen doctors turn out to be wrong when they have given families a dire prognosis about their loved one. Honest mistakes do happen but with time and care, a surprising number of such patients survived and some even fully recovered. In the past, however, we weren’t in such a rush to withdraw treatment or donate organs. Today, a dire prognosis can be a death sentence.

In Zack’s case, barring a true miracle, it seems most likely that the doctors were well-intentioned but frighteningly wrong.

The diagnosis of brain death itself can be problematic and is still being debated even in Catholic circles.2 But while debate will continue over the validity of brain death, it seems obvious that we also need much more scrutiny of the ethics and practicality of applying that theory. At the very least, brain death is not a term to be used lightly.

For example, despite claims that brain death soon results in the end of all bodily function, we now have cases of pregnant “brain dead” women able to live for even months until their babies could be delivered. At the present time, the tests required to diagnose brain death can vary widely from hospital to hospital. When I personally served on an ethics committee at a local hospital years ago, I was appalled when one young doctor proposed that our hospital adopt the least strict brain death tests so that we could obtain more organs. This can have lethal repercussions even outside the context of organ donation.

For example, recently an elderly Minnesota woman’s family was told that she was brain dead after a massive stroke. No organ donation was planned and the family decided to take the 65-year-old woman home to die. Less than a month later, she was awake, talking and the doctors now say there is a possibility of a full recovery.3

And, as I have written before, there is now a big push for organ donation policies to include taking organs from people who are not brain dead, but whose families or guardians agree to withdraw life support and donate the organs when (or if) the heart stops within about an hour.4 This kind of organ donation is called non-heartbeating organ donation (NHBD) or donation after cardiac death (DCD). Currently, a California surgeon is fighting charges that he used drugs to hasten a disabled man’s death in order to obtain his organs using this kind of organ donation.5

MEDICAL MIRACLES

Scientists do agree on at least one thing. There’s a lot we don’t know about the human body, especially the brain. In the meantime, we have become used to the term “medical miracles” when new discoveries are made.

In the past, for example, we have had the development of CPR (cardiopulmonary resuscitation), which literally changed our legal definition of death from the cessation of heartbeat and breathing to the irreversible cessation of heartbeat and breathing. Countless lives that could have ended prematurely are now being saved. And just by not giving up, we have discovered that drowning victims can sometimes recover full brain function after being submerged in cold water for a prolonged period of time.

In recent years, careful observation and new technology is showing us that many people thought to be in a coma or the so-called “vegetative state” can indeed think and feel.6 Unfortunately, and despite numerous cases of people waking up even years after being diagnosed as comatose or “vegetative”, many doctors and ethicists continue to insist that such people are hopeless and better off dead.

Death penalty opponents hold that it is better for ten guilty men to live than for one innocent man to die. Ironically, that same rationale is seldom applied to such patients.

LESSONS TO BE LEARNED

In the past generation, we have seen a societal U-turn from “sanctity of life” to “quality of life”. Thousands of people sign “living wills” and other advance directives stating that they don’t want even simple measures such as food and water or antibiotics in the event that they do not have full mental function. Futility policies to allow the removal of basic medical care even against the patients’ or families’ wishes are becoming increasingly common, even in Catholic hospitals.7 More and more countries are legalizing assisted suicide and even outright euthanasia.

Terminal sedation, when used to make a person unconscious until he or she dies from dehydration, is now viewed by many as an ethical and legal substitute for euthanasia.8 Some ethicists, like Peter Singer of Princeton University,9 insist that human beings actually lack “personhood” when diagnosed as “vegetative” or severely brain-impaired and that caring for such people is a waste of health care resources.

In light of this new view of human worth, it is disappointing but not surprising that Zack’s dad, like many other well-meaning but misguided people, would say, “He lived life to the fullest. And laying in bed the rest of his life? That wasn’t an option.” This same rationale is used every day to deny basic care to even conscious people like the frail elderly, people with severe disabilities, patients with Alzheimer’s, etc. Society seems to be quickly forgetting that there is a very real difference between withdrawing futile and/or burdensome treatment from someone near death and actually causing or hastening the death of a vulnerable person.

In the final analysis, it seems that the story of Zack Dunlap’s recovery is less a story about a miracle than a cautionary tale about a close call. If Zack indeed had his organs harvested, this whole incident would be seen as just another successful case of organ donation. If Zack had survived with severe brain damage, we probably would have never heard about him at all.

While the media may treat Zack’s recovery as a feel-good human interest story, I believe that we should instead consider Zack’s case as both a wake-up call and an opportunity: We desperately need reform of some of our questionable medical and ethical policies as well as some of our own attitudes toward the sick and disabled. And we need to scientifically examine medical mysteries like Zack’s recovery so that possibly even more people can benefit from such medical marvels.

As far as miracles go, perhaps Zack Dunlap’s recovery was God’s way of reminding us that we still don’t know as much as we think we do and that we still need to take good care of each other.

Notes:

1 “‘Dead’ man recovering after ATV accident”, March 23, 2008. available online at: http://www.msnbc.msn.com/id/23768436/

2 “Vatican resuscitates issue of whether brain death means total death” by Carol Glatz. Catholic News Service. September 15, 2006. Available online at: http://www.catholicnews.com/data/stories/cns/0605285.htm.

3 “Lake Elmo woman makes miracle recovery from ‘brain dead’” by Allen Costantini, KARE 11 News. Feb 13, 2008. Available online at: http://www.kare11.com/news/news_article.aspx?storyid= 498009.

4 “Ethical Implications of Non-Heart-Beating Organ Donation” by Nancy Valko. Voices, Michaelmas 2002, Volume XVII, No. 3. Available online at: http://www.wf-f.org/02-3-OrganDonation.html.

5 “Surgeon Accused of Speeding a Death to Get Organs” by Jesse McKinley. New York Times. February 27. 2008. Available online at: http://www.nytimes.com/2008/02/27/us/27transplant.html?_r=1 &oref=slogin&ref=us&pagewanted=print.

6 “What if There Is Something Going On in There?” by Carl Zimmer. New York Times. September 28, 2003. Online at: http://www.nytimes.com/2003/09/28/magazine/28VEGETAT.html? pagewanted=print&position=.

7 “The Duty to Die: Scouting the Next Pro-Life Battlefield” by Deborah Sturm. insidecatholic.com. March 24, 2008. Available online at: insidecatholic.com/Joomla/index.php?option=com_content&task=view&id=3150&Itemid=48.

8 “When Is Sedation Really Euthanasia?” by Kathleen Kingsbury. Time. March 21, 2008. Available online at: http://www.time.com/ time/health/article/0,8599,1724911,00.html. See also my article “Sedated to Death? When ‘comfort care’ becomes dangerous” (written in 2002) at http://www.wf-f.org/02-2-terminalsedation.html.

9 “Taking Life” by Peter Singer. Excerpted from the book Practical Ethics, 2nd edition, Cambridge, 1993, pp. 175-217. Available online at: http://www.utilitarian.net/singer/by/1993—-.htm.
Nancy Valko, a registered nurse from St. Louis, is president of Missouri Nurses for Life, a spokesperson for the National Association of Pro-Life Nurses and a Voices contributing editor.

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2001 Voices: Of Living Wills and Butterfly Ballots

Voices Online Edition
Pentecost 2001 — Volume XVI No. 2

Bioethics Watch
Of Living Wills and Butterfly Ballots
By Nancy Valko, RN

Who can forget the infamous “butterfly ballot”? In last year’s presidential election, there were allegations that the butterfly ballot – one with candidates on both sides of the ballot and arrows pointing to the appropriate hole to be punched – confused elderly Florida voters into voting for the wrong candidate and thus gave Governor Bush the election.

But in terms of potential confusion – for young and old alike – the butterfly ballot has nothing on the “living will”. While confusion about ballots is terrible, confusion about matters like the “living will” can be lethal.
For example, earlier this year, I received a call from a woman concerned about her 100-year-old mother, who was living in a nursing home. “Joyce” worried that her mother, “Alice”, wasn’t receiving adequate medical care and food. She cited an instance where she wanted her mother be taken to the hospital for treatment of pneumonia and dehydration.

The problem was that the elderly woman had signed a “living will” eight years before, and listed her son rather than her daughter as the person to make medical decisions. And, according to the daughter who called me, the son was reluctant to authorize any more treatment for his mother because he felt it was time for her to die.

Alice, the mom, was now frail and needed help with eating and bathing but was conscious, though usually confused. In cases like this, nursing homes and other institutions rely on the “living will” and other advance directives as the ultimate legal arbiter. The daughter now had no say in her mother’s treatment and was even threatened with being barred from seeing her.

Is this what Alice envisioned when she signed her “living will” and, in effect, “voted” for non-treatment?

HISTORY OF THE “LIVING WILL”

Very few people signing “living wills” and other advance directives have any idea of how such documents became a universal aspect of health care today.

In the early 1970s when I was a young nurse, we had never heard of the “living will”. When a patient was confused or comatose and appeared to be dying, we discussed such possibilities as “do not resuscitate” (DNR) orders with families. Often, aggressive or useless treatments were discouraged because such measures were considered futile or excessively burdensome in that situation. But one thing we didn’t do was offer to withhold or withdraw treatments like antibiotics or feedings to cause or hasten the patient’s death

This all began to change with the advent of the “living will” and the increasing acceptance of the newly discovered “right to die”.

Actually, the “living will” was originally invented in 1967 by two groups, the Euthanasia Society of America and Euthanasia Education Council, and was touted as a first step in gaining public acceptance of euthanasia. These groups had been struggling for years to get “mercy-killing” bills (which would allow doctors to give disabled or dying patients lethal overdoses) passed in various state legislatures. The “living will” opened up the new strategy of an incremental approach.

Along with the “living will”, these groups also made strategic name changes: The Euthanasia Society of America changed into the Society for the Right to Die and the Euthanasia Educational Council became Concern for Dying. In the 1990s, the groups formally merged and are now known simply as Choice in Dying.

The first “living wills” were simple declarations such as “If I should have a terminal illness and I am unable to make medical decisions, I direct my attending physician to withhold or withdraw medical treatment that prolongs the dying process and is not necessary to my comfort or to alleviate my pain”. Horror stories about doctors overtreating dying patients – which sometimes happens – led people to believe that the “living will” was a necessity.
California became the first state to legalize the “living will” in 1976, as the California Natural Death Act. Eventually all other states followed suit. But there were some concerns.

In Missouri, pro-life advocates noted the beginning of court cases involving the removal feeding tubes from non-dying, brain-injured people now called “vegetative” and they feared the “living will” would allow such passive euthanasia. “Right to die” advocates in Missouri disavowed this and, to ensure passage of the pending “living will” bill, a provision was added that food and water were among the kinds of care and treatment that could not be withdrawn. That provision was short-lived.

Euthanasia advocates soon bemoaned the “limitations” of the “living will” and proposed a new document called the “durable powers of attorney for health care” (DPA). This new kind of “living will” allowed another person, usually a relative or friend, to be named to make all health care decisions whenever a person was mentally incapacitated.
It also usually added the newly invented term “permanent vegetative state” and a checklist of the types of treatment to be automatically refused.

In response, states like Missouri and New York passed “safeguards” to ensure that feeding tubes could not be removed without “clear and convincing” evidence that the person would have wanted feedings removed if in a “vegetative” state. This was about more than just the “vegetative” state. It allowed the “right to die” position to morph from one where the issue was allowing dying people a natural death to one where choice and legalities were the primary issues, whatever the patient’s condition.

This set the stage for the Nancy Cruzan feeding tube case in Missouri, which gave the biggest boost yet to the “right to die” agenda.

Nancy’s parents, with the help of “right to die” advocates, petitioned a local judge for permission to withdraw Nancy’s feeding tube despite the lack of “clear and convincing” evidence that this is what she would have wanted. This case of a woman said to be in a “vegetative” state for seven years gained national notoriety, and eventually reached the US Supreme Court, which upheld Missouri’s “clear and convincing” standard.

But public sympathy for Nancy’s parents was enormous and the case went back to the local judge who first ruled that the feeding tube could be removed. Three of Nancy’s former friends then came forward to testify that, about ten years previously, Nancy had seemed to agree with statements about not wanting to live in an incapacitated state. The judge determined that these statements met the “clear and convincing” standard and Nancy died twelve long days after her feedings were stopped.

In reaction to the Cruzan decision, the US Congress enabled the Patient Self-Determination Act (PSDA) to be enacted in 1991. Proposed by Missouri Senator John Danforth and New York Senator Daniel Patrick Moynihan, the PSDA mandated that all patients be offered information and documents on their right to refuse treatment and thus prevent another Cruzan case. Hospitals were threatened with loss of federal funding if they did not comply.

Despite this, “right to die” advocates were disappointed that relatively few prospective patients actually sign a “living will” or other advance directives. But they were heartened by the media and public acceptance of the “right to die”, which made withdrawal of treatment decisions common, whether or not a “living will” was signed.

“Right to die” advocates then set their sights on “physician-assisted suicide”, using the Nancy Cruzan case to make their case that, since death was the goal of withdrawing feedings from the “vegetative”, a constitutional “right to die” should allow lethal overdoses for conscious, terminally ill persons. The US Supreme Court didn’t buy this argument, but opened the door for states to “experiment”. Oregon passed the first assisted suicide law in 1994 (in effect in 1997).

Now, the “right to die” mentality has so thoroughly permeated health care that even Catholic medical ethics committees discuss “futility guidelines”, designed to overrule families or patients who want care continued when a patient is deemed to have a poor quality of life. Some prominent ethicists now recommend rationing health care and denying many routine medical treatments to patients over a certain age. “Living wills” are often interpreted by doctors and nurses as meaning the patient would rather die than live with a significant disability. Families are encouraged to make non-treatment decisions as soon as possible after illnesses such as strokes and asked “would your mom really want to live like this?” Coupled with the current cost-containment mania in health care, the “right to die” is fast becoming the “duty to die”.

ALICES’S “LIVING WILL”

As a nurse, I have seen all types of “living wills” over the years. Some are very long and full of legalese. Some are short and vague. One-hundred-year-old Alice’s “living will” is typical of many offered today – even in Catholic health care facilities – and contains both a “living will” and a kind of DPA. Alice’s “living will”, when examined, shows how such documents can cause more problems and confusion than they claim to “solve”.

The first page contains the usual terminology about “an incurable injury, disease or illness certified to be a terminal condition … where the application of life-sustaining procedures would serve only to artificially prolong the dying process and I am unable to participate in decisions regarding my medical treatment, I direct that such procedures be withheld or withdrawn”.

Unfortunately, while Alice may have envisioned a coma-like state and a condition such as cancer, the reality is that such conditions as a severe stroke or Alzheimer’s are often considered terminal conditions even though the person can live for a long time afterwards. And the “inability to participate in making decisions” can be temporary or permanent and even include conscious states such as simple confusion.

On the second page of Alice’s document, as usual, there is the instruction that “if there is a statement below with which you do not agree, draw a line through it and add your initials.” (Try adding this instruction to a voting ballot in Florida and hear the howls of “confusing” and “unfair”.)

Alice’s document goes on to say that it is “the final expression of my legal right to refuse medical or surgical treatment and accept the consequences of such refusal”. This exempts the doctor from any legal risk regarding withholding or withdrawing treatment but, ironically, has led to lawsuits where a doctor does provide treatment and the patient survives but is debilitated. Many health care professionals now feel that the safest course when a patient has a “living will” is “if in doubt, do not treat”.

The second page of Alice’s document expands the terminal condition to “a condition, disease or injury without hope of significant recovery, or extreme mental deterioration or other (fill in the blank)”.
The document goes on: “Life-sustaining procedures I choose to have withheld or withdrawn include: surgery, heart-lung resuscitation (CPR), antibiotics, mechanical ventilator (respirator), tube feeding (food and water delivered through a tube in the vein, nose or stomach), and other (fill in the blank)” and “a meaningful quality of life means to me that: (fill in the blank)”.

The document also conveniently provides permission for organ donation.

Alice, like most people signing such a document, did not cross off anything or fill in the blanks. This left Alice vulnerable to such possibilities as the denial of simple antibiotics if she contracted pneumonia or the withholding of surgery if she fractured her hip. And terms like “significant recovery”, “extreme mental deterioration” and “meaningful life” have no real medical meaning and are thus open to various interpretations by doctors or families.

Unlike consent forms, “living wills” and other advance directives are not used to inform people about the risks and benefits before treatment in a particular situation. Instead, they are used to cover refusal of treatment in an unknown future situation, which can lead to unintended consequences.

For example, in 1988 my own mother was fully conscious but in a moderate stage of Alzheimer’s disease when a growth was discovered in her throat. Surgery was performed and the doctor informed us that the growth was an incurable cancer wrapped around her windpipe. During surgery, he performed a tracheostomy, a hole in her throat. My family was aghast at this and when the doctor started talking about chemotherapy and radiation, they drove him from the room. They assumed the doctor was trying to prolong Mom’s dying. And, indeed, if my Mom had signed a “living will” like Alice’s, she would have felt comfortable checking off surgery, chemotherapy and radiation as death-prolonging treatment to be refused.

What my family didn’t know was that the tracheostomy was performed to prevent future suffocation as the tumor grew. The chemo and radiation were proposed as palliative therapy, hopefully to prevent or minimize the pain as the cancer grew in that sensitive area.

After the dust settled, I explained all this to my father who then authorized the treatments. Mom tolerated them well and, although no guarantees were made, she didn’t even need a Tylenol for pain at the end. Three months after the surgery she died as predicted and just the way she wanted – peacefully in her sleep. I shudder to think what might have happened if Mom had a “living will” and no one to explain options.

RESISTING THE NEW “DEATH ETHICS”

Even Catholic hospitals and nursing homes now offer the kind of “living will” Alice had and, sadly, most people falsely assume that such directives are automatically compatible with Church teaching.

While it has always been true that futile or excessively burdensome treatment or care can morally be refused, the Church has long condemned causing or hastening death, whether by omission or commission.

In 1998, Pope John II said that “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 [what the Catechism of the Catholic Church calls “the refusal of ‘over-zealous’ treatment” (2278); cf Evangelium Vitae, 65] and taking away the ordinary means of preserving life, such as feeding, hydration, and normal medical care”. Unfortunately, some Catholic ethicists have influenced Catholic health care facilities to follow the secular, “right to die” ethic instead.

Groups like National Right to Life, American Life League and the International Anti-Euthanasia Task Force have developed more protective documents like the “Will to Live” and “Loving Will”, to address many of the problems in the standard “living will” or other advance directives. These documents can be useful, especially when family members disagree about ethical options, but they are not usually available at hospitals and nursing homes. The documents can be obtained by contacting the organizations themselves (see below) or sometimes through pro-life organizations. An excellent discussion of ethical healthcare decisions can be found in Father Edward Richard’s article, “Bioethical Magisterium on Normal Treatment and Ordinary Care”, in the June 2000 issue of Voices (available on our web site, see “About Medicine and Morality” page).

However, no “living will” is risk-free and even refusing to sign a “living will” is no guarantee that the “right to die” will not be exercised for you despite your wishes.

The best defense now is to have a loving relative or friend who is informed about ethical options and who can legally speak for you if you cannot because of illness or injury. It is also crucial that you choose a doctor without a “right to die” bias, preferably one with a good understanding of traditional ethical principles.

As a former hospice nurse and current ICU nurse, I can attest that there is a very real difference between allowing natural death and hastening or causing a person’s death.

The Culture of Death spawned the “living will” and it has been very successful in seducing society to increasingly ignore this difference, even to the point of accepting assisted suicide. We continue down this slippery slope at our own peril.

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Sources:
1. “Time for a Formalized Medical Futility Policy” by Rev. Peter A. Clark, SI, PhD, & Catherine M. Mikus, Esq., Health Progress, July-August, 2000.
2. “Pope Tells American Bishops: Fight Death Culture” EWTN news, 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.