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.

2009 Mercatornet: Have death panels already arrived?

Have death panels already arrived?

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.

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

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

Ethics Committees: Are “Death Panels” Already Here?

by Nancy Valko, RN

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

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

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

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

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

ETHICS AND HEALTH CARE REFORM

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

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

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

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

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

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

COMMON SENSE AND ETHICS

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

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

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

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

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

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

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

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

But things are different today.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Nancy Valko, a registered nurse from St. Louis, is president of Missouri Nurses for Life, a spokesperson for the National Association of Pro-Life Nurses and a Voices contributing editor.
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2003 Voices: Futility Policies and the Duty to Die

Voices Online Edition
Lent/Easter 2003
Volume XVIII, No. 1

Futility Policies and the Duty to Die

by Nancy Valko, RN

When I first saw “Jack” last September, he was lying unconscious in an ICU with a ventilator to help him breathe. It had been two weeks since a truck struck the 60 year-old and his injuries were devastating — including broken bones, blunt-force trauma and a severe head injury.

When Jack’s family contacted me about seeing him, they were desperate. The doctors told them that he would never come out of the coma and the issue of withdrawal of treatment was raised. The wife refused.

I could make no guarantees but I gave Jack’s wife a pamphlet on coma stimulation1 and began visiting Jack weekly.

As an ICU nurse myself, I could see that some of the staff felt that taking care of Jack was a waste of time. So I was not surprised when the family was soon told that nothing more could be done and that he should be transferred to a long-term care facility.

By that time, Jack was opening his eyes and his family thought he could squeeze their hands at times. The medical and nursing staff assured them that this was just a “reflex”.

Jack was transferred to the new facility. There his condition soon became critical again and he was moved back to an ICU. The staff found out I was a nurse and some of them asked me what the family’s rationale was. It was obvious that they too felt Jack was a hopeless case.

But over time, Jack improved and was able to breathe on his own. Eventually it became evident to all that Jack was starting to respond. Just before Thanksgiving — a little more than two months after his accident — Jack became fully awake. He is now in a rehabilitation facility near his home in Illinois where the staff is working to strengthen his arms and legs, which were broken in the accident. Now, no one meeting him would ever guess that he had had a brain injury.

Even doctors and nurses who ordinarily disdain religion often call cases like Jack’s “miracles”. Of course, for many in healthcare, it’s easier to believe in miracles than to accept that they were wrong and a life could have been unnecessarily or prematurely lost.

But while Jack’s story has a happy ending, many similar cases do not. Families often automatically accept or are even pressured into accepting a doctor’s grim prognosis for their loved one and withdraw treatment after a patient’s brain is injured by trauma or other conditions like a stroke. Usually, the patient then dies.

Unfortunately, families like Jack’s who choose to continue treatment despite a “hopeless” prognosis are increasingly being denied that choice because of “futile care” policies being adopted in many hospitals throughout the country.

And such “futile care” principles have so permeated much of medicine today that there are even cases of elderly or terminally ill patients expected to have months of life remaining whose doctors didn’t want to prescribe medications such as antibiotics because the person was going to die sooner or later anyway.2

Futile Care Policies and “Choice”
Most people assume that either they or their families will have the right to decide about medical treatment when they become seriously or critically ill. The biggest problem, people are told, is that they or their loved one will be tethered to a machine forever if they do not sign a “living will” or other health care directive. The “right to die” movement has convinced most people and medical personnel that the ability to refuse treatment is one of the most important aspects of medical care to prevent patients and families from needless suffering. Indeed, poll after poll shows that most people say they would rather die than be a “vegetable”. And many people automatically assume that they would never want their lives prolonged if they had a terminal illness, were paralyzed or senile, etc. Most people assume that refusing treatment, like assisted suicide (the other goal of the “right to die” movement), means choice and control.

But a funny thing happened on the way to this supposed “right to die” nirvana.

Some families and patients did not “get with the program” and insisted that medical treatment be continued for themselves or their loved ones despite a “hopeless” prognosis and the recommendations of doctors and/or ethicists to stop treatment. Many doctors and ethicists were appalled that their expertise would be challenged and they theorized that such families or patients were unrealistic, “in denial” about the prognosis or were mired in dysfunctional family relationships. (In contrast, families who agree to withdraw treatment are almost always referred to as “loving” and their motives are spared such scrutiny.)

At a 1994 pediatric ethics conference I attended, one participant was even applauded when he suggested that parents who refused to withdraw treatment from their “vegetative” children were being “cruel” and even “abusive” by not “allowing” their children to die. In some cases, doctors and ethicists have even gone to court to force withdrawal of treatment over a family’s objections. These ethicists and doctors were stunned when judges were often reluctant to overrule the families.

Yet over the years and unknown to most of the public, many ethicists have still refused to concede the choice of a right to live and instead have developed a new theory that doctors cannot be forced to provide “inappropriate” or “futile” care and treatment to patients deemed “hopeless”. This theory has now evolved into “futile care” policies at hospitals in Houston, Des Moines, California and many other areas. Even Catholic hospitals are now becoming involved.

In the July-August 2000 issue of the Catholic Health Association’s magazine Health Progress3, Catherine M. Mikus and Reverend Peter Clark — a lawyer and an ethicist — argue that it is “time for a formalized medical futility policy” in Catholic hospitals. Like many such articles in secular ethics journals, the authors refrain from being too specific about what conditions and which patients would be subject to such a policy. The authors concede that even the American Medical Association says that medical futility is a concept that “cannot be meaningfully defined” and is a “subjective judgment” on which there is no widespread agreement.

Mikus and Clark make it clear that they are not talking about treatments that are “harmful, ineffective, or impossible”, the traditional concept of medical futility that, of course, is not ethically obligatory. For example, no doctor would honor a family’s request for a kidney transplant for a person who is imminently dying. Instead, the authors argue for a new definition of futility to overrule patients and/or families on a case-by-case basis based on the doctor’s and/or ethicist’s determination of the “patient’s best interest”. Ironically, the “right to die” movement was founded on the premise that patients and/or families are the best judges of when it is time to die. Now, however, we are being told that doctors and/or ethicists are really the best judges of when we should die. This is reminiscent of the imperious statement attributed to Henry Ford that his Model T customers could “paint it any color, so long as it’s black”. Thus the “right to die” becomes the “duty to die”, with futile care policies offering death as the only “choice”.

But despite the lack of consensus on what constitutes futile care, these Catholic authors are passionate about why such policies should be adopted and insist that their policies are “firmly rooted in the Catholic tradition”: “Proper stewardship of these resources entails not wasting them on treatments that are futile and inappropriate. They must be rationally allocated; to waste them is ethically irresponsible and morally objectionable”. In other words, a social justice-style argument is being made to save money.

Unfortunately, when it comes to Mikus and Clark’s opinions, not only is a sense of humility lacking but also a sense of God’s jurisdiction: “In assessing whether a treatment is medically futile, physicians must consider carefully not only the values and goals of the patient/surrogate, but also those of the community, the institution, and society as a whole”.

This not only ignores God’s ultimate role in life and death but also turns the Hippocratic oath on its head. While the Hippocratic oath is no longer routinely used with medical students, its enduring legacy has always been the sacredness of the commitment of the doctor to his individual patient. Now, new doctors are often told that their ultimate commitment instead resides with the health and welfare of society.

It is appalling that Catholic doctors are now also being encouraged to adopt the secular and utilitarian concept of the greatest good for the greatest number rather than a spiritual commitment to each individual for whom they care. Under this new standard, Jesus the great Healer must be considered a failure for tenderly concerning Himself with healing such “little” lives during His ministry rather than constructing a more “politically correct” health system.

Where Do We Go from Here?
Just a generation ago, doctors and nurses were ethically prohibited from hastening or causing death. Family disputes and ethically gray situations occurred, but certain actions (such as withdrawing medically assisted food and water from a severely brain-injured but non-dying person) were considered illegitimate no matter who was making the decision.

But with the rise of the modern bioethics movement, life is no longer assumed to have the intrinsic value it once did, and “quality of life” has become the overriding consideration. Over time, the ethical question “what is right?” became “who decides?” — which now has devolved into “what is legally allowed?”

Thus, it is not surprising that the Health Progress article on futility policies is subtitled “Mercy Health System’s Procedures Will Help Free Its Physicians from Legal Concerns”. This is no afterthought, but rather the greatest fear of the authors that families may sue.

Doctors are understandably afraid of civil or malpractice lawsuits. In this article, Mikus and Clark attempt to convince doctors that a written futility policy — no matter how vague — is necessary. Then doctors would use the power of an ethics committee to back up their decisions in any legal proceeding in order to prove that the determination of futility meets the hospital’s standard of care.

Even more ominously, there have been efforts to incorporate futile care policy into state and federal law. For example, Senator Arlen Specter introduced the Health Care Assurance Act of 2001 that, while aimed at improving health care for children and the disabled, nevertheless contains a provision that there is no obligation “to require that any individual be offered, or to state that any individual may demand, medical treatment which the health care provider does not have available, or which is, under prevailing medical standards, either futile or otherwise not medically indicated”. [Emphasis added.]

The first step in solving a problem is to recognize it. We cannot always rely on a mainstream media that would rather exhaustively cover a star’s shoplifting charge than alert us to thorny ethical problems. Legislation and policies are often developed without public knowledge or comment. Health insurance can no longer be counted on to pay for all needed treatment in many situations.

This is why publications such as Voices and many other Catholic periodicals, pro-life news services and the Internet are so important, especially in the area of ethics. We in the Church are also blessed with encyclicals, Vatican documents and the writings of the doctors of the Church, which give clear principles that are still just as valid and useful as ever in a world of increasing technology and seductive decadence.

If we truly want to protect lives, save souls and fight injustice, we cannot remain silent in the face of an ever-expanding “culture of death”.

Notes:
1 Jane D. Hoyt, M.Ed., “A Gentle Approach – Interacting with a Person who is Semi-Conscious or Presumed in Coma”. Available online at: www1.umn.edu/phrm/pub/hoyt.html

2 Wesley Smith, “Futile Care Theory and Medical Fascism”, FrontPage magazine, December 2002. Available online at http://216.247.220.66/archives/miscellaneous/futile.htm (broken link)

3 Peter A. Clark, SI, Ph.D., and Catherine M. Mikus, Esq., “Time for a Formalized Medical Futility Policy”, Health Progress, July-August 2000. Available online at:
http://www.chausa.org/PUBS/PUBSART.ASP?ISSUE=HP0007&ARTICLE=F – broken link

Nancy Valko, a registered nurse, is president of Missouri Nurses for Life and a Voices contributing editor.

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