disability

Canada’s Assisted Suicide Law to Cover Mental illness, Dementia and Minors

nancyvalko assisted suicide, Canada, disability, euthanasia, law

In a Canadian CBC News article titled “Mature minors, mentally ill should have right to doctor-assisted death, report advises”, a special committee of MPs (members of Parliament)  and senators issued a 70 page report “Medical Assistance in Dying: A Patient-Centred Approach”  stating that mature minors and mentally ill people should not be excluded from the right to “doctor-assisted death” (physician-assisted suicide).  It also states that Canadians should have the right to make an “advance request” for physician assisted suicide, termed “medical aid in dying”,  after being diagnosed with certain debilitating, but not necessarily terminal, conditions.

There is not even a requirement that the lethal overdose be oral or self-administered and the Canadian province of Quebec has already started lethal injections.

Ironically, capital punishment existed in various forms in Canada until 1998, when the federal government completely abolished the death penalty.

How can lethal injections be “cruel and inhumane” for convicted murderers but a civil right when it is chosen by an ill person?

And while physician-assisted suicide laws in the US routinely provide immunity for physicians, the Canadian recommendations also exempt nurses, pharmacists and other health care practitioners from key criminal code provisions.

Age of Consent

Although the Canadian Pediatric Society pushed to exclude minors regardless of competence, the report states that

“Given existing practices with respect to mature minors in health care and the obvious fact that minors can suffer as much as any adult, the committee feels that it is difficult to justify an outright ban on access to medical assistance in death for minors.”(Emphasis added)

Mental Illness

The report states that the right to assisted death should not be limited to physical conditions, and that Canadians with psychiatric conditions should not be excluded from “doctor assistance to end suffering” (physician-assisted suicide).

However

“As reported by Medscape Medical News, the inclusion of psychiatric suffering in assisted death laws in European countries such as Belgium has sparked significant debate, particularly with research showing that many individuals who have a history of suicide attempts later regret taking such action.

“Most people who consider or attempt suicide never die by suicide [and] the conviction that there is no alternative but to end their lives often passes with the resolution of an acute crisis,” medical ethicist Paul S. Applebaum, MD, told Medscape Medical News.

“By making the option of suicide easier, ie, a painless, certain death with medical assistance, the Dutch, Belgian, and similar laws may encourage many people, especially women, who would not have ended their lives to do so,” said Dr Applebaum, Dollard Professor of psychiatry, medicine, and law and director of the Division of Law, Ethics, and Psychiatry at Columbia University College of Physicians and Surgeons, in New York City.” (Emphasis added)

“Advance Consent” for Assisted Suicide for People with Dementia

The advocacy group Dying With Dignity Canada applauded the report’s recommendations, especially the one to allow advance consent.

“Patients deserve real choice,” said CEO Shanaaz Gokool in a release.

“Without the option to consent in advance to assisted dying, Canadians with dementia who want to die in peace with the help of a physician face a dire choice: access assisted dying prematurely, while they are still competent; or risk losing competence before their wishes can be carried out, only to be condemned to the exact fate they sought to avoid.” (Emphasis added)

Actually, that result was already on the agenda when “living wills” were first proposed by Chicago lawyer Louis Kutner in his 1969 article “Due Process of Euthanasia: The Living Will, A Proposal” .

Some people say that Holland, Switzerland and Belgium are not like the US so that their virtually unregulated euthanasia policies should not affect us. But no one can deny the potential lethal impact on our own society from this terrible “right to be killed” propagated by our neighbor to the north.

Arguing Life, Death and Assisted Suicide

nancyvalko assisted suicide, Canada, disability, euthanasia, law, medical ethics, mental health, palliative care

In the article “Sides discuss NY proposal for aid in dying”, the exchange between Diane Coleman, a founder of Not Dead Yet, the foremost disability organization fighting physician-assisted suicide, and  Dr Timothy Quill, who fought for the constitutionality of physician-assisted suicide in the landmark 1997 US Supreme Court Vacco v Quill decision, is very enlightening.

Diane Coleman of Not Dead Yet spoke simply and eloquently:

“I don’t think I speak for all (opponents), but the disability community’s core message is that if assisted suicide is legal, some people’s lives will be lost due to mistakes, coercion and abuse, and that’s an outcome that can never be undone.

There is inherent discrimination in assisted-suicide laws. Most suicidal people receive suicide prevention. Assisted suicide laws would carve out an exception to that, and that exception would apply to people who are elderly, ill, disabled, and those are devalued groups in society. … Assisted-suicide laws would say, ‘these certain people, we not only agree with their suicide but give them the means to carry it out.’ We’re saying it comes down to social justice. Equal rights means equal suicide prevention.”

And

“It’s really not about physical pain. If you look at Oregon reports, about reasons people want to commit suicide, the reasons are things like feeling like the person has lost their autonomy, they’ve lost their dignity, they can’t do the things they used to do. They feel like a burden on their families. Those are psychosocial reasons that relate to the disability that people have when they have an advanced stage or chronic condition.”

On the other hand, Dr. Quill portrayed assisted suicide as little more than a benign discussion:

“Whether or not this practice is legalized, seriously ill patients are asking us to talk about it, they’re asking us to consider it” said Quill, founding director of the palliative care program at URMC and a board-certified palliative care consultant. (Emphasis added)

But to the question “Why do people with a terminal illness want to end their lives?”, Dr. Quill telling states:

“Some of it has to do with severe symptoms. I would say that’s not the majority. The majority is people who are tired of dying. It’s going on way too long for them. The kind of debility and weakness that accompany it, particularly for people that are used to being in charge of their lives, is very, very, very hard. Some of those people want to talk about what options they have to accelerate the process.” (Emphasis added)

This is very different from the way physician-assisted suicide has been sold to the public as a necessary last resort for terminally ill people in “unbearable pain”. However, as a 2014 article  “Dignity, Death, and Dilemmas: A Study of Washington Hospices and Physician-Assisted Death” admits, pain is not even a requirement for receiving physician-assisted suicide  in Oregon and Washington state:

The authorizing legal statutes in both states 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. A patient rights framework provides the primary moral structure… (Emphasis added)

Thus, physician-assisted suicide is really about power and control over death, not the  suffering of the individual. And it is this power and control that has led European countries like the Netherlands to expand physician-assisted suicide even to non-terminally ill people who cannot or have not made the death decision themselves such as babies with deformities and people with dementia, mental illness or other impairments.

Closer to the US, the Canadian Supreme Court  has legalized physician-assisted suicide but still  without formalized rules, even on conscience rights.  In the province of Quebec, legal injection euthanasia kits  can be distributed to any doctor who wants them.

The Assisted Suicide Agenda in the US

It is alarming that the influential American Academy of Hospice and Palliative Medicine that had this same Dr. Timothy Quill in the article as a recent past president and honoree of their Visionary award. But it should not be surprising that the AAHPM has changed its former position of opposition to physician-assisted suicide to a position of “studied neutrality” towards what it now calls “physician-assisted death”.  Neutrality is progress to physician-assisted suicide activists like Dr. Quill and organizations like Compassion and Choices that need to neutralize medical opposition as much as possible while quietly setting up relentless campaigns to legalize assisted suicide in every state. If enough states give in, a new Supreme Court decision may even overturn the Vacco v Quill decision and legalize physician-assisted suicide throughout the US.

But in the meantime, trying to sell “neutrality” to doctors and convincing the media to change the term “physician-assisted suicide” to  “physician-assisted death” cannot mask the inevitable and lethal damage done not only to individuals but also to our medical and legal institutions that can no longer ensure ethical protection for our lives.

College professor Rachel Adams:”My son with Down syndrome is not a mascot for abortion restrictions”

nancyvalko abortion, adoption, disability

In this Washington Post article, Rachel Adams, herself a mother of a child with Down Syndrome, maintains that

“But we won’t end discrimination by limiting access to abortion, which will have the unwanted consequence of driving some women to risk their health by seeking illegal alternatives and other women to bear children they are not prepared to raise. Better to put resources into services and supports that improve the lives of people with Down syndrome and their families.” (Emphasis added)

This presents a false choice between aborting a child because of a probable diagnosis (without knowing the eventual prognosis) and a possibly difficult life for the mother, even though studies have shown great satisfaction in families with a child with Down Syndrome.

Also, it is very telling that nowhere in this article does Ms. Adams even mention adoption. There are groups helping prospective adoptive parents for children with Down Syndrome and other special needs. Here are just a few (this does not imply my personal endorsement of any group) : National Down Syndrome Adoption Network, Special Angels Adoption, Adopt America Network, Love without Boundaries-Adopt Special Needs, Special Needs Adoption Coalition.

Ms. Adams obviously loves her son but prenatal medical discrimination has led to medical discrimination after birth for people with disabilities. All the “resources into services and supports that improve the lives of people with Down syndrome and their families” she mentions will not necessarily protect her son’s life as he ages and especially if her son outlives her.

My son and daughter-in-law hope to adopt or foster a child when my daughter-in-law recovers from her recent kidney transplant. They have said they would be happy to have a child with special needs, especially a child with Down Syndrome like my son’s late sister Karen.

My testimony for Simon’s Law

nancyvalko disability, futility, law, medical ethics, Simon's Law

On February 16,  a hearing was held by the Health committee of the Missouri Legislature on Simon’s Law.

Here is my submitted testimony to Dr. Frederick and all the committee members:

I am a past member of the Down Syndrome Association in St. Louis, an RN and legal nurse consultant and most importantly, the mother of a daughter who had special needs.
I cannot be at the hearing tomorrow but please accept my testimony in favor of Simon’s Law:

In September 1982, I gave birth to a beautiful baby girl we named Karen. Karen was born with both Down Syndrome and a severe heart defect called a complete endocardial cushion defect. A pediatric cardiologist was called in and even before I left the recovery room, he gave me the bad news about our Karen’s heart defect and even said that it was inoperable. He said to take Karen home where she would die in 2 weeks to 2 months.

This doctor turned out to be wrong. Further testing revealed that Karen’s heart defect could be fixed with one open heart operation and she had a 90% chance of survival.

My husband (a doctor) and I (an ICU nurse) were determined that our daughter receive the best medical care possible for her heart condition and without bias because she had Down Syndrome. We knew about the recent Baby Doe case where the parents of baby boy with Down Syndrome and an easily correctable tracheoesophageal fistula refused surgery so that their baby would die. The case went to court and a judge ruled that the parents could make that lethal choice. As medical professionals, we were appalled by this case but at least we could make sure that our daughter would have her chance at life. Or so I thought.

The bias against children like Karen soon became apparent when the cardiologist said he would support us “100%” if we chose to let our Karen die without surgery. I had to insist that Karen be treated for her heart defect the same way any other child would be treated for the same heart defect. To do otherwise was medical discrimination and illegal.

Then, the surgeon recommended for Karen’s pre-op heart catheterization was overheard questioning the wisdom of even treating “all these little mongoloids”! Another doctor sympathetically told us that “people like you shouldn’t be saddled with a child like this.” We were stunned by this negative view of children with Down Syndrome.

Later on when Karen developed a pneumonia that was being successfully treated in the hospital, I found out that my trusted pediatrician had even made Karen a “Do Not Resuscitate” behind my back because I “was too emotionally involved with that retarded baby”. The DNR was rescinded and we took Karen home but I found it hard to trust any doctor after that.

Unfortunately, Karen developed another bout of pneumonia and died of complications just before her scheduled open-heart surgery. But even at the very end, when Karen was apparently dying, a young resident physician “offered” to pull all her tubes so that she would die as soon as possible. I reported this young man to the chief of pediatric cardiology who was furious with the resident. (This chief of cardiology later started a clinic for children with Down Syndrome to meet their special health needs.)

Although we lost Karen when she was just 5 ½ months old, I still treasure my time with her and because of her, I became an advocate and volunteer for people with disabilities.
I wish I could say that my story is unique but I have seen many similar situations over the last three decades involving people of all ages with disabilities.

Therefore, I beg you to approve Simon’s Law. It will potentially save lives as well as send a strong message that medical discrimination against the disabled based on subjective judgements of “medical futility” and/or predicted “poor quality of life” is wrong.

Sincerely,

Nancy Valko, RN ALNC

“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.

LIVING WITH “LIVING WILLS”

nancyvalko advance directives, disability, end-of-life, euthanasia, food and water, futility

In the early 1970s when I was a young ICU nurse, none of us medical professionals had even heard of a “living will”. There was a universal presumption for life and “quality of life” was something to be improved, not judged.

Nevertheless, sick people could and did refuse treatment and even check themselves out of the hospital against medical advice. When patients appeared to be dying, they or their families could agree to a “do not resuscitate” (DNR) order. Overly aggressive or useless treatments could be discouraged when such measures were considered medically futile or excessively burdensome for the patient. But one thing we didn’t do was offer to withhold or withdraw medical care like tube feedings to cause or hasten a patient’s death.

Unknown to us, all this began to change after Louis Kutner, a Chicago lawyer, wrote an article in the Indiana Law Journal titled Due Process of Euthanasia: The Living Will, A Proposal” in 1969. (emphasis added). By 1970, The Euthanasia Society of America (later renamed the Society for the Right to Die) distributed 60,000 living wills. In 1976, California passed the nation’s first “living will” law. Now, there are proposals to eventually include even physician-assisted suicide in “living wills”.

I use the common term “living will” to represent the wide variety of end of life documents that have evolved since the original “living will”, including the newest but problematic one called POLST (physician orders for life-sustaining treatment).

I wrote a 2001 article “Of Living Wills and Butterfly Ballots”   because I was concerned that many people were signing such documents with little knowledge of the history and problems with such documents that I witnessed as a nurse and ethics committee member. However, with the crucial help of a sympathetic media, court cases involving seriously brain-injured people like Terri Schiavo and government mandates such as the 1990 Patient Self-Determination Act have resulted in the heavy promotion of “living wills” as simple, worry-free documents. Now the federal government is set to begin paying healthcare providers for talking to all Medicare beneficiaries about such documents.

CAN “LIVING WILLS” BE HAZARDOUS TO YOUR HEALTH?

Recently, I talked to lawyers who expressed confusion and concern over the “living wills” they were asked to draw up. In addition, Medscape, a subscription website for medical professionals, and the American Medical News have published recent articles such as “Advance Directives May Be Hazardous to Your Health”  and “Clearing Up Confusion on Advance Directives”. The last article even warns

“misinterpretations of end-of-life documents too often result in lost lives or unwanted care” such as when “physicians incorrectly assume that DNR means not to treat a patient who is critically ill”.

When even doctors and lawyers are confused, there is a big problem. In the real world of medicine, I even heard some doctors say that if in doubt, it might be legally safer not to treat than to treat someone with a “living will” in an emergency because of lawsuits where a patient with a “living will” survived or had serious impairments.

SHOULD I EVEN HAVE A “LIVING WILL”?

When “living wills” first came out, I felt I was safer not to have one to make sure I received treatment. Later, I changed my mind. I felt it was safer to designate someone I trusted with the legal authority to make decisions if I was unable to speak for myself rather than just leave it to my family members, some of whom vigorously disagreed with my stance for feeding brain-injured people like Terri Schiavo.

I never tell people that they must or must not have a “living will” but everyone should be fully informed. I do encourage people to check out information sites like the Pro-Life Healthcare Alliance’s “Informed-A Guide to Critical Medical Decisions”  which has sections explaining ventilators, CPR (cardiopulmonary resuscitation), feeding tubes, misuse of opioids and sedatives as well as end of life considerations.

There are also several informative and protective “living will” documents from organizations like the Patients Rights Council and the American Life League. The National Right to Life Committee even has such documents online and specific to state laws.

SOME POINTS TO CONSIDER BEFORE SIGNING A “LIVING WILL” STYLE DOCUMENT

Here are some of my personal recommendations as a nurse before signing a standard “living will” or even a protective one.

1. Make sure the document is as short as possible, simple to understand and that the presumption for life is expressly stated so that if doctors are in doubt about your wishes, they should treat you.

What most people do not know is that “living will” style documents often go unread by doctors and nurses until a critical situation develops and time is of the essence. Even worse, some doctors and nurses still assume or misinterpret “living wills” as meaning the patient does not want treatment, especially if the patient is older or disabled.

2. Avoid vague terms like “significant recovery” and “terminal event” that have no objective medical standard and can easily be misinterpreted.

I’ve seen patients who have just had a stroke or head injury incorrectly judged “terminal” or “incurable” by doctors. Such patients often get better with time and treatment. And, of course, any treatment that is medically futile or excessively burdensome to the patient can be ethically withdrawn later. I add the emphasis because now futility and burden are too often assumed to mean an inadequate “quality of life” or economic burden to the family or society.

3. Designate one person you trust to make your medical decisions with a backup person or persons.

Sometimes when only one person is the designated decision maker, he or she may be unavailable or incapacitated so a backup is important especially in a critical situation.

4. Consider not checking off particular treatments or conditions to be automatically refused.

Personally, I wanted a positive “living will” that only designates my decision maker and his/her right to make decisions about my care rather than signing a “living will” to refuse future treatment or set possible future conditions where I would want treatment stopped or withheld. Instead, I want all current options, risks and benefits of treatment fully explained to my decision maker based on my current condition.

5. Many “living wills” contain a section on pain with such sentences such as “I want my doctor to give me enough pain medicine to relieve my pain”. You might consider adding a phrase like “without hastening my death.”

I have seen unnecessarily high doses of pain medicine deliberately given to make a patient unconscious while food and water were stopped. Often, this was called “comfort care” instead of terminal/palliative sedation  but the result was hastening or causing death by dehydration and/or suppression of breathing.

Everyone wants and deserves adequate pain control at the end of life. Carefully increasing doses of pain medication and other measures work in virtually any situation and family members should advocate this for their loved ones.

CONCLUSION

There may be no perfect “living will” but as a former hospice nurse and family caregiver myself, I believe that dying people have a right to a good death with as few medical interventions as possible for comfort without deliberately hastening or causing death. The time before death may be short or long but I believe that people have the right to die at their own natural pace.

Death is not something to get over with as soon as possible. As some people with terminal illness have told me, they hated being treated as if they were already dead when they were still alive. They wanted to hear jokes, be with family and friends, go to church, etc. And since hearing is thought to be the last sense to go, I interacted with my dying patients in comas just as I did with my conscious patients.

The process of coming to terms with  death can be difficult at times but it also can be a meaningful time to review a life with all its joys and sorrows as well as a time for family and friends to show love, support and even healing.

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.

How NOT To Prevent Assisted Suicide On World Suicide Prevention Day

nancyvalko assisted suicide, disability, euthanasia

HOW NOT TO PREVENT ASSISTED SUICIDE ON WORLD SUICIDE PREVENTION DAY

Today is World Suicide Prevention Day and this week is the US National Suicide Prevention Week.

.According to the International Association for Suicide Prevention:

“We may not be able to pinpoint the exact figure, but we do know that each individual suicide is a tragic loss of life. It is hard to imagine the extreme psychological pain that leads someone to decide that suicide is the only course of action. Reaching out to someone who is struggling can make a difference.” (emphasis added)

All aspects of suicide, suicide prevention and the groups at risk are addressed by these organizations. Yet on the topic of preventing physician assisted suicide, there is only silence.

If indeed some suicides should be considered acceptable or even worthy, I have some suggestions on how NOT to prevent assisted suicide:

1. Change the terminology. Call your organization “Compassion and Choices” rather than The Euthanasia Society of America. Insist that physician assisted suicide now be called “death with dignity”, “aid in dying” or some other term that eliminates the word “suicide.”  Glamorize assisted suicide as “heroic” and “altruistic”. Refuse to even acknowledge the existence of suicide contagion and its devastating effects on surviving friends and families. Insist that only terminally ill people with 6 months to live and are in unendurable pain are eligible despite the evidence.

2. Change strategies as necessary. If most people in a state like California will not vote to legalize assisted suicide, find a judge to rule that a ban on assisted suicide is unconstitutional and hope that this will lead to a new US Supreme Court decision. Lobby professional health care organizations like the AMA, ANA and American Academy of Hospice and Palliative Medicine to take at least a neutral position on assisted suicide because some of their members are in favor of assisted suicide. Encourage articles in journals like Psychology Today promoting the idea of “rational suicide”. Promote positive statements on assisted suicide from celebrities like Hugh Grant, Dr. Mehmet Oz and Stephen Hawking.

3. Demonize the opposition. Call them “religious extremists” who are against individual choice and freedom. Accuse them of actually wanting people to endure needless suffering. Tell health care professionals that their conscience rights  are merely a right to ” to exercise their idiosyncratic convictions at the expense of patient care”.  Ignore disability organizations like Not Dead Yet.

4. Manage negative facts to persuade the media and thus the public to support assisted suicide. Publicize tragic stories like Brittany Maynard’s to raise even more money to legalize assisted suicide everywhere. Dismiss  or downplay stories about coercion, euthanasia on demand in European countries, ethical palliative and hospice care  and criticism of so-called “safeguards” and self-reported state statistics.

5. Most of all, ignore the lethal consequences of physician assisted suicide on individuals, health care itself and society.

IF I KNEW MY DAUGHTER HAD DOWN SYNDROME…

nancyvalko abortion, disability, grief, medical ethics

IF I KNEW MY DAUGHTER HAD DOWN SYNDROME….
September 6, 2015
Recently I read a Yahoo news article titled  “If I Knew My Daughter Had Down Syndrome, I Would Have Aborted Her – All Women Should Have That Right”  that broke my heart.
Beautiful pictures of this mom and her daughter accompanied her harsh words:

“Ohio is poised to become the second state in this country to ban abortion because of a fetal diagnosis of Down syndrome this fall. As a pro-choice woman who has a 7-year-old daughter with Down syndrome, I find this absolutely appalling.”
“This is an issue that hits close to home for me: If I had had a prenatal diagnosis, I would have obtained an abortion. Today, I am beyond grateful that I didn’t. But I cannot ever in any circumstances imagine insisting others not have that right.”

Here is what I wrote back in the comments section of this article:

I am an RN whose third child Karen was born in 1982 with both Down Syndrome and a heart defect. I was given a “choice” of whether or not to allow a surgery even though there was an up to 90% chance of success. I was outraged because that “choice” would not have been offered if my daughter did not have Down Syndrome. I knew then that I had to fight this medical discrimination not only for my daughter but for other children with disabilities.
Years later, a nice woman asked that, if I knew my daughter had Down Syndrome before birth, would I have chosen abortion. Instead of talking about how people with Down Syndrome were defying old, pessimistic predictions or how there was actually a waiting list of prospective adoptive parents for children with Down Syndrome, I asked the woman if she knew how abortions were done.
She said no so I asked her if she wanted to know. When she consented, I simply and clinically described how first, second and third trimester abortions were done. The woman responded with horror and said “You couldn’t do that to your child!”
That is exactly the point. It is not about what challenges a child may have but rather about deliberately killing an innocent child at any stage of life.
I would like to reassure the mom in this article that, while her feelings are understandable, she has apparently been a great mother to her daughter and should be proud of herself.
I would also like to encourage her to let go of any guilt over what she might have done, celebrate her beautiful daughter and please don’t discourage other mothers from choosing life for their child. Nancy V.

THE TRAGEDY OF SO-CALLED “THERAPUETIC ABORTION FOR FETAL DEFECT”

A friend of mine I will call “Mary” (not her real name) had an ultrasound of her unborn baby at 5 months that appeared to show anencephaly.  Anencephaly is a serious birth defect in which a baby is born without parts of the brain and skull. Most babies born with this condition die soon after birth.

However, Mary was also told that this pregnancy would kill her and, in a panic, she quickly endured 28 hours of hard labor with a prostaglandin-induced abortion before her baby was delivered. She never saw her baby.

Mary tried hard to put the tragedy behind her and decided to tell most of her friends that she had a miscarriage rather than an abortion. However, as she confided later, she half-expected to be somehow punished when she later had a son and it took several months after his birth before she could truly believe that her new son was healthy. But every Christmas she also secretly hung an ornament for her dead first child.

What Mary didn’t know was that her obstetrician apparently lied to her. First of all, she was not in any special physical danger from her pregnancy.

I later ran into an old friend who happened to be the doctor (not Mary’s obstetrician) who read her ultrasound. Since he also knew I was a friend of Mary’s, he asked how she was doing. He turned white and had to sit down when I told him about the abortion. It turns out that not only was Mary healthy but the ultrasound suggested only  the possibility of anencephaly. Such initial testing is too often wrong and should not be used as a definitive diagnosis.

I felt Mary had a right to know all this but she rebuffed my offer to tell her what I learned. However, five years later, she called and  said that although she didn’t want a lecture, she had a question that continued to haunt her: What did the hospital do with her baby’s body?

Abortion claims many victims because there is an enormous difference between dying and being killed no matter what the reason.