medical ethics

Do We Know Enough About Brain Death?

nancyvalko brain death, medical ethics, organ donation

Just last month, there were two major developments reported on the controversial issue of brain death. One was an article about a lawsuit to revoke the death certificate of Jahi McMath, a California teenager who was declared brain dead 2 years ago but is still alive and apparently showing some signs of improvement.

The other was a December 30, 2015 article in Medscape, a website for medical professionals that requires subscription, titled “Not All Hospital Brain Death Policies Comply With Guidelines” . The article reports on a medical journal study titled “Variability of Brain Death Policies in the United States.”

Jahi McMath

Jahi McMath, a 13-year-old girl, underwent a routine surgery for sleep apnea in December 2013 at a California children’s hospital. That night she started bleeding and eventually her heart stopped. Her heart was restarted and she was placed on a ventilator to stabilize her condition, but soon the doctors declared her brain dead and prepared to remove the ventilator. However, the family insisted that the ventilator be continued, hoping that Jahi might eventually get better.

The doctors disagreed, insisting that Jahi was legally dead by brain death criteria. The parents went to court to keep the doctors from removing her ventilator but after a series of legal battles lasting weeks, a judge eventually gave Jahi’s family permission to transfer her to another facility that would continue the ventilator.

Virtually all the ethicists and other experts contacted by most media outlets condemned the family’s actions as denying the reality of brain death. In a January 10, 2014 USA Today article, ethicist Arthur Caplan, head of the bioethics division at New York University’s Langone Medical Center, criticized the judge’s decision for Jahi’s family, declaring that Jahi’s new doctors are “trying to ventilate and otherwise treat a corpse,” Caplan said. “She is going to start to decompose.”

Now, 2 years after Jahi was declared brain dead, her family is in federal court suing to revoke her death certificate because as their experts contend

“At this time, Jahi does not fulfill California’s statutory definition of death, which requires the irreversible absence of all brain function, because she exhibits hypothalamic function and intermittent responsiveness to verbal commands.”

A future ruling revoking Ms. McMath’s death certificate would be groundbreaking.

“Variability of Brain Death Policies in the United States.”

In this December 28, 2013 Journal of the American Medical Association Neurology article, a study was done of 508 US hospital policies on brain death determination.

Alarmingly, the article states that hospital brain death criteria requirements “are not 100% compliant” even with updated 2010 guidelines by the American Academy of Neurology which require only one examination to determine brain death.

And of the total 508 hospitals, the article states that only

“about a third of policies (33.1%) required specialist expertise in neurology or neurosurgery, but 150 policies had no mention of who could perform the determination. Many policies still allow for more junior physicians to determine brain death, the authors noted.” (Emphasis added)

Also disturbing, the article noted that some policies didn’t require testing of lower brainstem function (required for a finding of irreversible loss of all brain functions) with less than 80% of the policies requiring the absence of a cough reflex. Only 57.2% of hospital brain death policies required that oxygen be given to maintain oxygenation during the critical apnea test to determine if a patient can take breaths off a ventilator, even though low a low oxygen level can lead to more brain damage.

In an effort to reassure, Gene Sung, MD, past-president, Neurocritical Care Society, and director, Division of Neurocritical Care and Stroke at UCLA claims that he

agreed that there have there have been no documented reports of regaining function after a declaration of brain death. “But still, we don’t know for sure; maybe mistakes happened and they weren’t reported,” he said. (Emphasis added)

Actually, there have been multiple reported cases of people regaining at least some function after a brain death declaration such as Zach Dunlap (who fully recovered) as well as Jahi McMath.

If as Dr Greer, the lead author of the study, states “This is one of those diagnoses where we need to be correct 100% of the time”, must we not rigorously examine such cases to determine if or why there was a misdiagnosis to ensure that current brain death guidelines really hold up to scrutiny?

Besides the potential premature loss of lives, our medical integrity is at stake and we medical professionals must prove worthy of the trust society gives us.

“What Kind of Mother is 8 Months Pregnant and Wants an Abortion?”

nancyvalko abortion, disability, euthanasia, family, grief, medical ethics, prenatal testing

Just after Christmas, the popular fast news website Yahoo News published the article “What Kind of Mother Is 8 Months Pregnant and Wants an Abortion?”  “as an example of one of our best of 2015.” (emphasis added)

In this story, an anonymous woman called “Kate”, a married mother of one daughter, found out at almost 8 months that her unborn second daughter had Dandy-Walker Syndrome, a genetic disorder that can result in mental and physical disabilities. A subsequent test was said to show severe brain abnormalities.

Kate, now an administrator of the website “Ending a Wanted Pregnancy” which includes a Poor Prenatal Diagnosis Index, decided to have an abortion-for her unborn daughter’s sake. Adoption and keeping the baby were mentioned as options but were rejected by Kate without explanation.

As Kate relates her story:

The doctor said, “We expect your baby to have moderate to severe mental retardation; she’s going to have moderate to severe physical disability; she is probably never going to walk or talk; she will possibly never be able to lift her head; she is going to have seizures all of the time… (and) Babies like this one are not generally comfortable enough to sleep.”

In that moment, I had to shift my thinking. I was hoping for special ed, and had been focusing on questions like: How much should you save to know your special-needs daughter will be OK after you die? I was thinking about long-term care and mild to moderate disability. Instead, I had to think about a baby who was probably not going to live very long, and the longer she lived, the more pain she would be in. That realization – that I was more scared of her living than of her dying — is what made the choice for me.

Kate then tells how difficult and expensive ($25,000) it was to find an abortionist to perform such a late abortion. Kate’s doctor eventually found one in Colorado, far from Kate’s home in Boston and Kate endured a four day abortion procedure.

Kate relates the procedure:

The whole first day was counseling and testing to make sure it was safe to do the procedure. They want to make sure you completely understand what is going to happen and that no one is pressuring you into the decision. At the end of the day, I signed all the paperwork, and the doctor injected the baby with a drug that, over a few hours, slowed her heart to still. It was a very, very difficult day. Euthanizing the baby is, obviously, a very hard thing to do. (emphasis added)

On the fourth day, labor was induced and Kate delivered her dead daughter.

Kate’s 2 year old daughter cried when Kate told her that her expected sister was “gone”. Three years after the abortion, Kate says

Now, every six months or so, we talk about it again — her understanding of it evolves as she grows. At this point, she knows the baby died because she was sick in a way the doctors couldn’t fix, because she had holes in her brain, and you need your whole brain to be healthy.

Kate’s story was obviously meant to generate sympathy for a distraught mother and thus show why abortion should continue to be legal. However, the shocking description of the third trimester abortion and the continued effect on the mother and sister undermine the narrative that abortion is the best option in such a difficult situation.

ANOTHER SIDE TO THE LATE-TERM ABORTION DECISION

Personally, I know what it is like to be told that your baby has severe problems and might die. I was told just a short time after my daughter Karen was born that she had an inoperable heart defect and would live just “2 weeks to 2 months.” I know the panic and fear that mothers like Kate must feel but in my case, as in many others, the doctor turned out to be  wrong about her terminal diagnosis.

Although my Karen later died of complications from pneumonia before her open heart surgery, I treasure the almost 6 months we had together and I have no regrets.

Today, I also have a wonderful stepdaughter who has Turner’s Syndrome, one of the conditions listed in the Poor Prenatal Diagnosis Index on the  “Ending a Wanted Pregnancy” website, and she is now a kind, generous woman who has no mental or physical disabilities.

In both these cases, abortion would have “solved” nothing.

Unfortunately, stories like Kate’s are desperately discouraging to women and families facing a difficult prenatal diagnosis. Tragically, the article also ignores the help and resources available to help such children and their families.

For example, the article does not mention groups like local Birthright centers and the website Prenatal Partners for Life which is “dedicated to providing families, either expecting, or those who have had, a child with special needs or a life limiting condition, the support, information, and encouragement they need to make informed decisions involving their preborn or newborn child’s care.” There are also support and information websites for specific conditions like the Dandy-Walker Alliance , the condition that Kate’s baby had.

And anyone who reads pro-life news sites such as Life News  and NRL News Today  has read many inspiring stories of hope and even unexpected happiness when a woman chooses life for her baby despite a difficult or even terminal diagnosis.

These and other other websites also contain information about Project Rachel, an organization that helps women, men and even families to heal after abortion.

CONCLUSION

I am not writing this blog to condemn Kate or other women who have had abortions. My heart goes out to them and I wish I could have had a chance to personally offer help, options, encouragement and information. I consider these women as additional victims of the abortion mentality that has so infected our society.

However, I do have a problem with abortion supporters who use such tragic stories to garner sympathy and support for their political agenda of legal abortion at any time for any reason and paid for by taxpayers as “reproductive health”.

Women and their babies deserve better.

Miracle Baby Comes Home for Christmas

nancyvalko brain injury, end-of-life, medical ethics, Uncategorized

Francesca and Lee Moore-Williams held their beautiful 18 month old daughter Bella’s hand as her ventilator was turned off and they waited for her death. But just 30 minutes later, Bella awoke  “kicking and screaming” according to the UK’s Mirror newspaper article “Miracle baby whose life support was turned off home for Christmas”. Five months later, she is scheduled to come home this Christmas.

Bella’s health became a concern in April when clumps of her hair fell out. Three months later, she took a turn for the worse and was admitted to a hospital in critical condition. Doctors told the parents that a MRI scan showed abnormalities on both sides of her brain and at some point, the decision was made to turn off the ventilator supporting her breathing.

According to the Mirror article:

She was later diagnosed with the genetic disorder Biotinidase deficiency, which is so rare it affects just one in every 60,000 births.

Sufferers of the condition do not produce enough biotin – a vitamin which is essential for healthy cell growth.

The deficiency can be fatal if left untreated but will now be managed safely with tablets.

And today:

Bella, of Clacton-on-Sea, Essex, who turns two in January, is now learning to walk and talk and her hair is growing back.

Experts say she is around eight months behind other children her age but she is expected to catch up.

Francesca said: “She’s at nursery and to look at her you wouldn’t think she’s been through what she has.

Perhaps this Christmas “miracle” also holds a message about the need for hope and humility for those of us in the medical professions.

Merry Christmas and Happy Holidays to all!

 

 

Contraception and Informed Consent

nancyvalko family planning, medical ethics

My late grandmother always told me “Never discuss religion, politics or sex”. Contraception can touch on all three of these topics and birth control itself can usually be counted on to arouse strong and conflicting opinions in any group.

However, contraception is crucially also a medical issue. With a range of contraceptive options and so many contrary claims about benefits and risks, it is essential for everyone, especially women and girls, to know the facts when they have to make a decision.

As Dr. David J. Hilger writes in his December 2015 article titled “Contraception and Informed Consent-Women Need a Full Account of the Risks”, the first oral contraceptive was marketed in 1960 and

“Despite early indications of severe and sometimes life-threatening risks, oral contraceptives were quickly approved and widely accepted. It was not until after oral contraception was widely utilized that many of the medical risks were published. Information regarding risk continues to be discovered and is reported in the medical literature, but it is not widely publicized.”

What I appreciated about this article was that it contained not only the latest information on some of the medical risks of oral contraceptives but also the latest research in Natural Family Planning, a routinely overlooked topic even in a doctor’s office or clinic. It is essential for women to know all the options, risks and benefits when making a birth control decision to have truly informed consent.

MY JOURNEY

As a nurse, I thought I was well-informed about contraception when I started using the Pill in 1974. At that time, all I knew about side effects was the risk of weight gain which I experienced myself when I almost could not fit into my wedding dress! I stopped 18 months later when my husband, a doctor, read medical journal articles about the increased risks of blood clots with the Pill

I never used hormonal birth control again and I eventually learned and practiced Natural Family Planning which worked great for me in both conceiving and postponing pregnancy.

It was many years later when I discovered more information about contraceptives in medical journal articles about the possible post-fertilization (abortifacient) effects , increased risk of depression or, most ironically, increased risk of sexual dysfunction. For me, the knowledge of the possible abortifacient effect alone would have kept me from ever using hormonal contraception.

In recent years but rarely mentioned in the media, there has also been many  birth control lawsuits filed against a number of different kinds of birth control pills and devices.

CONCLUSION

My children and especially my daughters, gave me even more incentive to research the facts when their public schools gave sex education classes and I discovered glaring lapses and inaccuracies. For example, condoms were promoted as safe sex even though a Centers for Disease Control fact sheet admits that

“However, condom use cannot provide absolute protection against any STD.”

Another example is that Natural Family Planning was ignored in favor of a negative depiction of the old “rhythm method”.

In the end, I believe that birth control is not a decision to be taken lightly and that women of all ages have the right to know the potential risks and options. I only wish I had known more myself in 1974.

Germany Legalizes Assisted Suicide-As Long As It Is “Free”

nancyvalko assisted suicide, euthanasia, medical ethics, nursing

While the UK Parliament overwhelmingly defeated a physician-assisted suicide bill in September 2015, less than two months later the German parliament has passed a law legalizing some assisted suicides. As Reuters News reported:

“The bill, which was upheld with 360 out of 602 votes, criminalizes organizations that assist patients in terminating their own lives for profit. It is meant to prevent the commercialization of the procedure as a “suicide business.”

However, single instances of suicide assistance – by a doctor or relative – do not contradict the new law. A husband who helps his terminally ill wife to die would not be prosecuted.

“Commercial” assisted suicide would be punished by up to three years imprisonment, even if doctors allegedly perform the procedure to relieve suffering.

Why Germany?

The law is a surprise to many, especially since Germany has long been sensitive to the issue of euthanasia following its’ history in World War II when the Nazis used the practice to kill over 200,000 people with mental and physical disabilities as well as millions of Holocaust victims.

Actually, the 1945 Hadamar Trial involving euthanasia by healthcare professionals at the Hadamar psychiatric clinic was the first mass atrocity trial in the US zone of Germany following World War II. As a nurse, I was particularly horrified when I first read about the famous study of the willing participation of nurses titled “Killing while caring: the nurses of Hadamar”

What can we expect?

Former Justice Minister Brigitte Zypries said the new German assisted suicide law “will open an era of great legal uncertainty” and will certainly be appealed to the Federal Constitutional Court.

But If efforts to stop the German law fail, the law will doubtless be expanded in the future as other countries in Europe have done.

Although ignored or dismissed in the US, the expansion and problems of euthanasia/assisted suicide in European countries like the Netherlands, Belgium, Luxembourg and Switzerland show the danger of first accepting a supposedly “limited” assisted suicide law.

For example, the Netherlands now uses lethal injections to dispatch infants with disabilities and adults of any age even without physical illness or consent. Belgium has done planned organ donation after euthanasia by lethal injection with the Ethics Committee of Eurotransplant even formulating recommendations for organ donation after euthanasia.  And Switzerland has a booming business with assisted suicide organizations like Exit and Dignitas even though a study showed that 16% of assisted suicide deaths in Switzerland are of people who have no underlying illness.

Conclusion

As the late Richard John Neuhaus wisely said ” I believe in the slippery slope the same way I believe in the Hudson River. It’s there.”

But until we are ready to recognize the potent logic about the disastrous and unintended consequences when we legalize “just a little bit” of legalized medical killing, we may find that the slippery slope has no bottom.

Physician-assisted Suicide: Nurses in the Line of Fire

nancyvalko assisted suicide, conscience rights, medical ethics, nursing

Years ago, the newly legalized Oregon physician-assisted suicide law caused much discussion at my St. Louis hospital. Some of my fellow nurses said that they supported such a law but when I asked them if they would participate, they were shocked. “No, of course, the doctor would have to do it!”, one exclaimed. Some nurses, like perhaps most people,  thought assisted suicide would only occur at a patient’s home with his or her family sitting with the patient watching the drinking of the lethal overdose.

I explained that in hospitals or hospices, would we expect the assisting doctors to be present when the patient ingested the lethal overdose, not to mention staying with the patient and family during the time it could take for the patient to die? My colleague agreed that nurses, not doctors, would probably bear the brunt of the “dirty work” of assisted suicide.

Back in 2000 and three years after Oregon legalized physician-assisted suicide, I saw an article from Nursing Spectrum magazine titled “Assisted Suicide: What Role for Nurses?” that stated:

Initially, when the law was designed, the assumption was that physicians would be the first ones to explore PAS with patients,” says Pam Matthews, RN, BSN, administrator for Evergreen Hospice, Albany, OR, “but in reality, nurses are usually the ones in the line of fire…. Much of nurses’ roles lies behind the scenes long before the drama of PAS unfolds. Home care and hospice nurses actively help patients understand their rights, acting as advocates for those who are considering PAS.” (emphasis added)

How many nurses are really willing to “advocate” for physician-assisted suicide? The article states:

“Before PAS became law, it was publicly debated, and we performed surveys of our hospice teams’ feelings on the issue,” Matthews says. “We found that most nurses felt strongly that patients should have the choice of PAS, although most said they would not participate in the event.” (emphasis added)

Recently, I spoke to a nurse in Washington State who is against physician-assisted suicide law about nurses’ experience with physician-assisted suicide in her state. She referred me to a 2014 study in the Journal of Pain and Symptom Management titled “Dignity, Death, and Dilemmas: A Study of Washington Hospices and Physician-Assisted Death”. (click on link and click PDF to read the full text)

While 21% of the Washington hospices in this study, mostly religiously-affiliated, refused any involvement in assisted suicide, this study sadly confirms the how legalization has affected both hospices’ and nurses’ role in assisted suicide.

Here are some excerpts:

First of all, the study notes that:

(T)he primary patient rights organization that facilitates arrangements for physician-assisted death, Compassion & Choices, refers terminally ill patients to hospice programs as a first resort for end-of-life caregiving. (emphasis added)
And admits that:
The authorizing legal statutes in both states (Oregon and Washington) make no reference to the experience of severe pain or intolerable suffering as an indication for a patient to make a request for physician-assisted death but rely entirely on the entitlement due a patient in respect of their personal dignity. (emphasis added)
However, the study rationalizes the upwards of 90% of physician-assisted suicide victims being enrolled in hospice:

The designation of a ‘‘physician’’ as the primary professional resource for patients allows hospice programs to maintain fidelity to the norm that ‘‘hospice neither prolongs nor hastens dying’’ (our emphasis). In short, although most patients who use the Death with Dignity rights are enrolled in hospice, hospice programs want to stress that this is a ‘‘physician-directed’’ process, not ‘‘hospice-assisted’’ death.” (emphasis added)

The study provides further dubious rationalization:

Although the phrase (“hastening death”) is descriptively accurate about what typically happens when a patient ingests the medication, describing the process in this manner appears to compromise a central hospice precept that dying or death is not to be hastened. It thus raises a broader question about an evolving hospice identity and integrity in which, in contrast to historical tradition and practice, hospice programs are willing to incorporate practices that hasten death. Insofar as several hospices in both Oregon and Washington have policies with respect to palliative sedation, in which pain relief is the primary goal even if death is hastened as a secondary consequence, it may be that some hospice programs could legitimately claim that the issue has already been resolved, and physician-assisted death is the moral equivalent for hospice of palliative sedation.” (emphasis added)

As far as allowing the hospice nurse to exercise his or her conscience rights:

In every circumstance in which personal, moral, or ethical values are cited as a basis for a caregiver to request they withdraw from being the responsible caregiver for a patient that makes a request, another staff member must be available to assure continuity of care and avoid violating the hospice value of non-abandonment.” Two traditional tenets of hospice philosophy-non-abandonment and refraining from ‘‘hastening death’’-remain prevalent values but create their own complications. (emphasis added)

One obvious complication is that it may not always be possible to find another nurse willing to be involved in the assisted suicide and if not enough willing nurses can be found, this “right” to withdraw may result in workplace discrimination against such nurses or even rejection of some potential hospice nurses before employment.

The article also cites a surprising reason, denied or unmentioned in news stories, for some hospice policies restricting nurses from actually attending the assisted suicide:

This may be particularly compelling in circumstances where the patient experiences complications with the medication (e.g., when the patient aspirates the medication), and some further medical treatment is needed by the patient for death to occur. In this context, the restriction on hospice staff presence serves as a further check against physician-assisted death becoming hospice-assisted death.
(emphasis added)

In the conclusion, the study refers to a 2011 Hastings Center Report by ethicist Bruce Jennings, MA:

Jennings contends that legalized physician-assisted death presents a defining moral choice for hospice identity because ‘‘legalization(of physician-assisted death) would liberate dying people from what hospice had been teaching could be a meaningful and valuable time of life. On the other hand, a major part of that quality of living while dying that hospice champions is autonomy, respect, and dignity. How could hospice stand against that?”  (emphasis added.)

For the sake of ourselves, our patients and our profession, how can we nurses NOT make a stand against physician-assisted suicide?

Euthanasia Kits, Conscience rights and Coercion

nancyvalko assisted suicide, Canada, conscience rights, medical ethics

The country that gave us Celine Dion, Mike Myers and Joni Mitchell is now giving doctors euthanasia kits?

As I wrote in a September blog “Disaster in Canada”, this past February, the Canadian Supreme Court unanimously ruled to end the long-standing ban on physician-assisted suicide and gave federal and provincial governments 12 months to craft legislation to respond to the ruling. Despite concerns raised by opponents of assisted suicide, the Canadian supreme court agreed with the trial court that physician-assisted suicide laws like that in Oregon has curtailed such abuses and missteps. “The risks associated with physician-assisted suicide,” the high court stated, “can be limited through a carefully designed and monitored system of safeguards.”

But even before such legislation is made, Canada’s second largest province Quebec is jumping to allow to active euthanasia via lethal injections.

In a shocking article in the British Medical Journal titled “’Euthanasia kits’ are prepared for Quebec doctors as palliative care centres rebel on right to die” , new guidelines from the College of Medicine in Quebec on physician-assisted suicide include “euthanasia kits”. These kits contain three sequential injections: a benzodiazepine sedative to relieve anxiety, a barbiturate to induce coma, and a curare-type neuromuscular block to stop the heart and respiration with backup doses, and detailed instructions. These kits will be available to all licensed physicians in Quebec. (Emphasis added)

Ironically, this lethal injection protocol mimics the lethal injection protocols used in the US for executions that are now being challenged by groups like the ACLU as “cruel” and “inhumane.”

The rationale for doctor-administered lethal injections over the self-administered oral lethal overdoses just signed into law in California is explained in the BMJ article:

The college decided that doctors should administer the drugs intravenously rather than simply prescribe an oral drug. Yves Robert, secretary of the college, said that this had involved seeking advice from abroad, including speaking to the first doctor to legally prescribe life ending drugs in Oregon, USA, nearly 20 years ago. “He told us there were some bad side effects,” Robert said, including regurgitation and, in a few cases, reawakening days later.” (Emphasis added)

Apparently, the annual Oregon state health reports on assisted suicide that rely merely on the assisting doctors’ self-reporting of problems are not much of a “safeguard”. Nonetheless, all the public (and the Canadian supreme court) continues to hear is that physician-assisted suicide laws are working well without any problems.

PUSHBACK

But the existence of euthanasia kits is not the whole story.

As the BMJ article reports, all 29 of Quebec’s palliative care centers announced a collective decision not to offer physician-assisted suicide, now renamed “medical aid in dying.” At least for now.

One director stated that “There is no doctor here who’s willing to push that syringe.”

This refusal has apparently enraged physician-assisted suicide supporters like Gaétan Barrette, Quebec’s health minister, who stated:

“Once again, this is a comment that prioritizes the views of the physician, when the law is made for the patient,” said Barrette. “I have a very formal announcement to make to these doctors: physicians, nowhere in Quebec, are owners of the institution. Not of the institution, nor of the floor, nor of a single bed. In no way can a doctor say: ‘In room 326, this will never happen.’ That is completely inappropriate.”

So now there are now efforts to challenge the conscience rights of objecting doctors.

Euthanasia/assisted suicide supporters know that without enough medical professionals willing to perform medicalized killing, the movement itself is dead.

Unfortunately, such supporters have had better luck in the US with convincing groups like the California Medical Association, the American Public Health Association, The American College of Legal Medicine, American Medical Student Association and American Medical Women’s Association and The American Academy of Hospice and Palliative Medicine to support legalized physician-assisted suicide or take a “neutral” position using polls, not principles.

It is a myth that physician-assisted suicide will only ever involve oral lethal overdoses requested by terminally ill patients in unbearable pain. As we have seen with the relentless progression of medically assisted killing in Holland, Luxembourg, and Belgium, it is just a matter of time before lethal injections are considered more humane than unreliable oral overdoses and the pool of potential victims expands beyond the terminally ill and just those who request it.

Tragically, it is a very short step from saying “I would not want to live like that” to saying “No one should live like that.”

Like those doctors of conscience in Quebec, those of us in the US who are also medical professionals need to be our own Resistance Movement against medicalized killing and the efforts to coerce us into participating.

This is Down Syndrome Awareness Month

nancyvalko abortion, disability, medical ethics, prenatal testing

In 1982, I was appalled when I read about the Baby Doe controversy  in which the parents of a newborn boy with Down Syndrome refused a common but life-saving surgery,  leaving him to die of starvation and dehydration while lawyers were appealing his case to the US Supreme Court. Four months later,  I gave birth my third child, a beautiful little girl named Karen Ann who had Down Syndrome and a major heart defect. Picture of Karen’s homecoming.

.In 2000, I wrote an article about Karen.  I reprint it here in honor of my Karen and Down Syndrome Awareness month:

“Who Wants a “Defective” Baby?”

“Of course, no one wants to adopt a defective baby. ” This was said with much emotion (and not much charm) by an older gentleman in a class at a local university where I was speaking this past April. I had been invited to discuss the legalities and effects of Roe v. Wade from a pro-life point of view to a class of senior citizens studying the Constitution and the Supreme Court.

While several of these senior citizen students defended abortion as a matter of complete privacy for the mother, their arguments centered around the “need” for legalized abortion as a solution for social problems.

Since I had told the story of my daughter Karen, born in 1982 with Down Syndrome and a severe heart defect, the pro-abortion students were extremely vocal about the personal and societal justifications for aborting a baby like Karen. Hence the statement about no one wanting to adopt a “defective” baby.

“Happily, sir,” I told the senior student, “You are wrong. Even back when I had Karen, I found out from the National Down Syndrome Association that there was a list of people waiting to adopt a baby with Down Syndrome. Just the night before, I added, I had found a new website for matching prospective parents with children who had chromosomal and physical defects.

The student refused to believe that this could be true.

The effects of Roe v. Wade
Life of the mother, incest, rape and fetal defect are the four hard cases usually cited to justify what has now become abortion on demand. All of these are uncommon reasons given in the estimated 1.3 million abortions every year; but the possibility of having a child with a birth defect is a common fear nearly all expectant mothers experience and, not surprisingly, polls show that the majority of the public support abortion in this circumstance.

Although I have always been pro-life, I could understand the fear underlying these poll results. Then my own daughter was born.

Just two weeks before the birth of my daughter Karen, I saw a mother trying to pry her young son with Down Syndrome away from a display case at the supermarket. She looked exhausted.

“Please, Lord,” I silently prayed, “Let this baby be ok. I can handle anything but Down’s.”

When Karen was born with Down Syndrome, I was stunned. But I was quickly put in touch with mothers from the Down Syndrome Association who replaced my fears with information and realistic hope.

Then a doctor told me the truly bad news. Karen had a heart defect, one so severe that it seemed inoperable and she was not expected to live more than 2 months. That certainly put things in the proper perspective.

What “pro-choice” really means
It turned out later that Karen’s heart defect was not quite as bad as originally thought and could be corrected with one open-heart surgery, but I was shocked when the cardiologist told me he would support me 100% if I decided not to agree to the surgery and allow her to die. This was especially hard to hear because, as a nurse, I knew that the doctor would have been otherwise enthusiastic about an operation offering a 90% chance of success — if my child didn’t also have Down Syndrome. Apparently, even though Karen was now a legal person according to Roe v. Wade by the fact of her birth, this non-treatment “option” could act as a kind of 4th trimester abortion.

It was then that I realized what pro-choice really meant: Choice says it doesn’t really matter if a particular child lives or dies. Choice says the only thing that really matters is how I feel about this child and my circumstances. I may be “Woman Hear Me Roar” in other areas according to the militant feminists, but I was not necessarily strong enough for a child like this.

I also finally figured out that Roe v. Wade’s effects went far beyond the proverbial desperate woman determined to end her pregnancy either legally or illegally. The abortion mentality had so corrupted society that it even endangered children like my Karen after birth. Too many people, like the student in Supreme Court class, unfortunately viewed Karen as a tragedy to be prevented.

Medical progress or search and destroy?
In the late 1950s, a picture of the unborn baby using sound waves became the first technique developed to provide a window to the womb. Ultrasound in recent years has been used to save countless lives by showing women that they were carrying a living human being rather than the clump of cells often referred to in abortion clinics.

But while expectant parents now routinely and proudly show ultrasound pictures of their developing baby, there is a darker side to prenatal testing. Besides ultrasound, which can show some birth defects, blood tests like AFP testing and the Triple Screen to test for neural tube defects or Down Syndrome are now becoming a routine part of prenatal care. Amniocentesis and chorionic villus sampling are also widely available tests to detect problems in the developing baby. It seems that every year, new testing techniques are tried and older ones refined in the quest to find birth defects prenatally.

97% of the time, women receive the good news that their baby seems fine; but the tests are not foolproof, and they can only test for hundreds of the thousands of known birth defects. Relatively few such birth defects can be treated in the womb at the present time. Some women want testing so that they can prepare for a child who has a birth defect, but when the tests do show a possible problem like Down Syndrome, up to 90% of women will abort.

While some hail prenatal testing as a way to prevent birth defects, the effects of such testing has led to what author Barbara Katz Rothman calls the “tentative pregnancy” in her 1993 book of the same name. Although Rothman calls herself pro-choice, her studies of women considering amniocentesis led to her conclusion that such testing has changed the normal maternal-child bonding in pregnancy and the experience of motherhood, usually for the worse.

“I might not be pregnant”
I observed this firsthand several years ago when I ran into an acquaintance and congratulated her on her obvious pregnancy. I was stunned when she replied, “Don’t congratulate me yet. I might not be pregnant.”

“Diane”, the mother of a 5-year-old boy, went on to explain that she was awaiting the results of an amniocentesis and said, “I know what you went through with your daughter but I can’t give up my life like that. If this (the baby) is Down’s, it’s gone.”

I reassured her that the test would almost surely show that her baby was ok, but I added that if the results were not what she expected I would like her to call me. I promised that I would give her any help she needed throughout the pregnancy and that my husband and I or even another couple would be willing to adopt her baby. She was surprised, as I later found out, both by my reaction and the information about adoption.

Diane gave birth to a healthy baby girl a few months later and apologized for her comments, saying that she probably would not have had an abortion anyway. But I understood her terrible anxiety. Society itself seems to have a rather schizophrenic attitude towards children with disabilities.

On one hand, people are inspired by the stories of people who have disabilities and support organizations like the Special Olympics; but, on the other hand, many people consider it almost irresponsible to bring a child with disabilities into the world to suffer when prenatal testing and abortion are so available.

But as the vast majority of parents who are either natural or adoptive parents of children with disabilities will attest, all children are born with both special gifts and special limitations. No child should be denied birth because of a disability or even a limited life expectancy.

Women who do abort after a diagnosis of a birth defect are also hurt. Besides depriving themselves of the special joys — which occur along with the difficulties — of loving and caring for such a child, these women often experience unresolved grief, guilt and second-guessing instead of the relief and peace they expect.

A few years ago, a local hospital which performs late-term abortions for birth defects asked a miscarriage and stillbirth counseling group to help with their distressed patients. The group declined, citing the fact that the most reassuring message they give grieving mothers is that there is nothing they did or didn’t do that caused the death of their babies. Obviously, that was not a statement they could make to mothers who abort. There is a very real difference between losing and terminating a child.

How many of these mothers knew before their abortions that, in practical terms, there has never been a better array of services and support for children with disabilities and their parents? Or that their children were dearly wanted by prospective adoptive parents? Such information might have been just the support they needed to choose life for their children.

Final thoughts
Despite the best medical care, my Karen died at the age of 5 and 1/2 months, but the impact of her life has lived on. At her funeral Mass, the priest talked about how this child who never walked or talked had transformed the lives of those who met her.

Especially mine.

After Karen died, I sat down and tried to put into words what Karen and all children with disabilities have to teach the rest of us. The following reflection was published in the National Down Syndrome Association newsletter in May, 1984.

THINGS NO TEACHER EVER TAUGHT
In 1982 my daughter, Karen, was born with Down Syndrome and a severe heart defect. Less than six months later she died of complications of pneumonia. Karen may have been retarded but she taught me things no teacher ever did.

Karen taught me:

That life isn’t fair — to anyone. That self-pity can be an incapacitating disease. That God is better at directing my life than I am. That there are more caring people in the world than I knew. That Down Syndrome is an inadequate description of a person. That I am not “perfect” either, just human. That asking for help and support is not a sign of weakness. That every child is truly a gift from God. That joy and pain can be equally deep. That you can never lose when you love. That every crisis contains opportunity for growth. That sometimes the victory is in trying rather than succeeding. That every person has a special purpose in life.

That I needed to worry less and celebrate more.

Why California’s Governor Brown is Wrong About Physician-assisted Suicide For “Excruciating Pain”

nancyvalko assisted suicide, medical ethics, palliative care

When California Governor Jerry Brown signed the physician-assisted suicide law, he wrote

“In the end, I was left to reflect on what I would want in the face of my own death,” the governor wrote. “I do not know what I would do if I were dying in prolonged and excruciating pain. I am certain, however, that it would be a comfort to be able to consider the options afforded by this bill. And I wouldn’t deny that right to others.”

Gov. Brown apparently believes the two myths promulgated by pro-assisted suicide organizations and most mainstream media about physician-assisted suicide: 1. Unbearable pain is routine in terminal illnesses and often cannot be relieved. 2. Unbearable pain is the reason people choose physician-assisted suicide.

As a former hospice, oncology, trauma, and critical care nurse, I made sure my patients had the best pain control possible after one unforgettable incident that happened shortly after I graduated from nursing school.

In 1969, I cared for a 32-year old woman I will call “Joan” who was dying from cancer. Joan looked emaciated with her skin  stretching over her bones and she was in terrible pain. Joan’s pain was so intense at times that she even talked about wanting us to kill her. At the time she was on a relatively small dose of Demerol given by an intramuscular shot every 4 hours as needed for pain.

I gave her the shot, wincing as I injected it into her shrunken buttock but the shot did nothing for her pain. I went to my head nurse who said to repeat the injection in four hours but  “Joan” continued to have intense pain.

I reported this to my head nurse and Joan’s doctor, suggesting that the dose be increased and/or given more often. The doctor told me no because he said he did not want her to “become addicted” to pain meds. I couldn’t believe my ears. I told him that she was imminently dying, even asking us about killing her to relieve the pain. Joan didn’t have to worry about addiction. I knew that from nursing school. The doctor still refused.

I went over his head to the chief of staff and the assistant director of nursing to plead for Joan. Instead, I was told that if I gave Joan her shot even 15 minutes earlier than the 4 hours, I would be fired.

I was frustrated to the point of tears but I knew there was one thing I could do.

I spent the last two days of Joan’s life with her as much as possible while working my shifts. After my shifts, I would sit with her for hours telling her stories, stroking her back, and doing whatever I could to distract her from the pain until she finally fell asleep. I would not abandon her.

After Joan died, I decided to learn everything I could about pain relief so that I could rebut a future ignorant doctor and help my patients. And I did. I studied every article on pain relief that I could find and talked to experts in the field as well as experienced colleagues. I’m still doing this 46 years later.

I never again had a patient die with severe pain.

For example and 20 years later, I started working on an oncology (cancer) floor in honor of my mother who I cared for until she died  from cancer and Alzheimer’s disease. As I promised my father, I made sure she was comfortable and Mom was even alert and in good spirits at the end.

I loved my new job in oncology but one day I came in hearing a woman down the hall screaming. That was unusual on our floor. It turned out that this woman I’ll call “Kim” was also a 32-year old woman with terminal cancer.

Kim’s pain had been under good control at home with long-acting morphine pills supplemented with fast acting morphine pills to relieve breakthrough pain. However, her family mistakenly thought that since her pain was relieved, she did not need to take her long-acting pills. Kim agreed but the result over a short time was terrible pain unrelieved by slowly increasing a morphine drip.

Working with the doctor, I came up with an overnight game plan to aggressively and quickly treat her extreme pain. The doctor agreed after I promised to monitor Kim closely so that her breathing would not be compromised.

By the next morning, Kim’s pain was finally under control and shortly afterward, she was able to be discharged home on her usual medication regimen.

Governor Brown, using pain as a reason to enlist doctors and nurses to help patients kill themselves is perverse not only because pain can be controlled, especially with the medical advances we have today but also because Oregon’s own report shows that physician-assisted suicide victims in Oregon cited “Losing autonomy”, “Less able to engage in activities making life enjoyable”, “Loss of dignity”,“ Losing control of bodily functions” and “Burden on family, friends/caregivers” before “Inadequate pain control or concern about it” as the top end of life concerns.

Personally, I will continue to fight for good pain and symptom control for all patients as passionately as I oppose physician-assisted suicide.

CALIFORNIA GOVERNOR SIGNS ASSISTED SUICIDE BILL AND MY 1996 ARTICLE “NO BLANK BULLETS”

nancyvalko assisted suicide, conscience rights, euthanasia, medical ethics

USA Today article: Calif. governor signs assisted suicide bill

Comment: Note the quote about why Governor Brown signed this bill after it was defeated 4 times in committee with weeks of deliberation: “In the end, I was left to reflect on what I would want in the face of my own death,” the governor wrote. “I do not know what I would do if I were dying in prolonged and excruciating pain. I am certain, however, that it would be a comfort to be able to consider the options afforded by this bill. And I wouldn’t deny that right to others.”

Unfortunately, it seems too many people base their judgements about physician-assisted suicide based on possible future self-interest rather than what the bill allows-medicalized killing by suicide-instead of the terrible consequences on people at risk, medical ethics and society.

Almost 20 years ago and before Oregon implemented its physician-assisted suicide law, I wrote the following commentary for the January-March 1996 edition of the Patients Rights Council newsletter. I believe it is just as valid today.

No Blank Bullets

Ready… aim… fire!

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

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

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

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

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

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

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

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

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

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

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

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