Month: February 2016

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

Justice Antonin Scalia, RIP

nancyvalko family, law

The sudden death of US Supreme Court Justice Antonin Scalia was announced Saturday, February 13, 2016.

His death was not just the devastating loss of a brilliant, wise and witty man but also the loss of the Supreme Court Justice I most admired and read over the years. Justice Scalia and his writings inspired me to pursue the study of the Constitution and law.

I never met Justice Scalia personally but I was privileged to be asked to serve on a panel to discuss end of life issues at a 2009 conference organized by his son, Fr. Paul Scalia.

Fr. Paul was apparently used to people like me gushing about his father but Fr. Paul himself is very proud of his father. Fr. Paul is great example of his father’s deep devotion to his wife and 9 children.

The loss of Justice Scalia has tremendous national implications since so many important cases have been decided by a 5 to 4 majority of justices and now there are several crucial cases being considered, including cases involving abortion and religious rights. It is widely recognized that with the loss of Justice Scalia, there are four justices who lean liberal and four justices who lean more conservative.

With only 8 justices now, such close cases may result in very different decisions than if Justice Scalia were there.

However, our country has been very fortunate to have someone like Justice Scalia both for his personal and his professional example of excellence.

May he rest in peace.

 

 

 

 

 

 

“David Daleiden Refuses Plea Deal for Probation: ‘What We Want is an Apology’”

nancyvalko abortion, fetal tissue, Planned Parenthood

I was glad to read the LifeNews.com article by Steven Ertelt about this response to the Houston grand jury indictment of David Daleiden and Sandra Merritt, especially one day after reading an outrageous USA Today op-ed titled “The great deception behind the anti-Planned Parenthood videos: Column” by Dawn Laguens, Executive Vice President and Chief Experience Officer for Planned Parenthood Federation of America.

Ms. Laguens’s op-ed claims that

“Daleiden, working in concert with other well-known anti-abortion extremists including Troy Newman of Operation Rescue, who has documented ties to violence, spent nearly three years creating a fake company, creating fake identities (including fake government IDs), obtaining a credit card using a fake name and information, trespassing onto private property and illegally recording conversations without consent with the express goal of finding a way to attack Planned Parenthood and the health care services we provide.”

Unfortunately, almost all mainstream media have supported the Planned Parenthood explanation of the surprising Houston grand jury’s indictment of Mr. Daleiden and Ms. Merrit rather than investigating whether a Houston Planned Parenthood clinic had sold the organs of aborted babies, the original purpose of the grand jury.

Journalism and Ethics

As a former reporter myself, I am constantly amazed by the lack of investigative reporting on abortion-related as well as other “politically incorrect” issues.

The Cambridge Dictionary defines investigative journalism as “a type of journalism that tries to discover information of public interest that someone is trying to hide.”

The mission statement for the Center for Medical Progress that was founded by David Daleidan shows how important this is:

The Center for Medical Progress is a group of citizen journalists dedicated to monitoring and reporting on medical ethics and advances. We are concerned about contemporary bioethical issues that impact human dignity, and we oppose any interventions, procedures, and experiments that exploit the unequal legal status of any class of human beings. We envision a world in which medical practice and biotechnology ally with and serve the goods of human nature and do not destroy, disfigure, or work against them.

Investigative journalism itself has had a long and mostly proud history and for many years there has even been a Pulitzer Prize for Investigative Reporting.

While Planned Parenthood criticizes David Daleiden’s and his Center for Medical Progress’ “deception” in making the undercover videos about selling fetal tissue from aborted babies, the Society of Professional Journalist’s Code of Ethics states that journalists should:

Avoid undercover or other surreptitious methods of gathering information unless traditional, open methods will not yield information vital to the public. (Emphasis added)

The Center for Medical Progress’ undercover investigation undoubtedly meets this criteria.

Planned Parenthood has long gone to great lengths to keep negative information about its activities from the public while taking over $500 million dollars a year in taxpayer money. Planned Parenthood is now endorsing Hillary Clinton for president and its’ “advocacy and political organizations have plans to spend at least $20 million in the upcoming election cycle”.

It seems the real problem with the undercover investigation of Planned Parenthood is not really the alleged “crimes” of the investigators but rather a fear of damaging information undermining Planned Parenthood’s carefully crafted public façade as a benevolent, “top-ranked non-profit” organization that helps women and families.

But even the threat of a lawsuit such as Planned Parenthood’s against the Center for Medical Progress has caused many individuals and organizations to settle cases rather than potentially be imprisoned and/or bankrupted by legal fees. It takes a lot of courage to stand up to such intimidation tactics by an entrenched, politically connected and well-funded organization like Planned Parenthood.

Good for David Daleidan and the Center for Medical Progress!

 

A Belated But Wonderful Christmas Present

nancyvalko family, organ donation

Last December, I wrote a blog “All I want for Christmas is…a kidney” about Bernie, my daughter-in-law, and her need for a kidney transplant. Last Friday, she received one!

Bernie is doing well and should be home sometime this week. It will be a new life for her and my son Steve without the hours of dialysis, strict dietary restrictions and other limitations. Their faith, hope, patience and acceptance of their situation have been truly inspiring!

Unfortunately, Bernie’s wonderful father Gene Buerke did not live to see this day. He died from a massive stroke 2 weeks ago but we are sure he is celebrating in heaven. Please pray for the repose of his soul as well as Bernie’s speedy recovery.

Thank you all for your prayers and support!