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Archive for the ‘Euthanasia’ Category

Three UK Court of Appeal judges heard arguments today in the case of releasing a baby boy on life support to get experimental therapy in the United States. Justices Andrew McFarlane, Eleanor King and Philip Sales are expected to issue a ruling Thursday in a case reviewing a decision against the baby’s parents made April 11 by High Court Justice Nicholas Francis.

Imagine yourself in this drama, as the London parents, Connie Yates and Chris Gard.

After their son Charlie was born healthy in August, they brought him to the Great Ormond Street Hospital [GOSH] for care in October. After establishing a diagnosis of a rare and incurable disease, GOSH then prevents them from taking their failing son overseas for a “last chance” experimental treatment!

Parents stateside have watched a related development as Scott and Sheryl Crosier led a crusade to stop DNR orders from being placed on children without parental notice and consent. Their 3-months-old son, Simon, with Trisomy 18, was denied resuscitation and died. Multiple stories of medical bias against medically fragile children were presented to the Kansas legislature, which enacted Simon’s Law in April by resounding margins.

Britain has no such hospital decision-making protection for parents.

After Charlie’s parents tracked down a potential new therapy, they launched a GoFundMe campaign –in January– to raise funds for the expenses of taking their baby overseas, with this plea:

“We are running out of precious time with our baby, he can’t have this treatment in the UK so our only hope now is to get Charlie to America.”

Over 80,000 members of the public responded generously to pledge over $1.5 million to cover Charlie’s expenses… yet GOSH will not let Charlie leave the premises!

For months, Charlie’s parents pleaded that they did not think their son was in pain; insisting that “their fight was not them ‘being selfish’ in keeping Charlie alive but about exhausting all options for potential treatment.”

CHARLIE DETERIORATES
WHILE CONFINED IN LONDON
Today, according to various UK news reports, GOSH attorneys doubled down on their position, telling the Court of Appeal that Charlie “cannot see, hear, make a noise or move,” that it is “hard for anyone to know whether he is pain,” and that further treatment would leave him in a “condition of existence.”

In essence, the hospital asserts the parents are unreasonable to pursue a treatment, cannot tell if they are causing Charlie pain and there’s no “meaningful” reason for Charlie to stay alive.

It is now five months since the funding campaign was started by Charlie’s parents, desperate to get him to the U.S. to be involved in experimental “nucleoside bypass therapy.” They acknowledged it was a move that had limited scientific basis to repair Charlie’s mitochondrial depletion syndrome, but would assuredly aid in the research to help others in the future.

It is hard not to see that Charlie Gard’s deteriorating condition is due in no small part to the stubbornness of a hospital unjustly asserting control, and “usurping the parental function” in the words of the parents’ attorney today in Court.

Followers of Charlie’s saga scratch their heads and say why has the hospital insisted –against the parents’ wishes—that Charlie be removed from life support and “die with dignity?”

The Court of Appeal will have the final word Thursday.

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Baby Charlie Gard: parents fight vs. life-support removal

Today, it was confirmed in the British press that the U.K. Court of Appeal will review on May 23, the case of Charlie Gard– a nine-months-old baby ordered off life support by the High Court last month.

Baby Charlie has been in a London hospital since October, when it was detected he had mitochondrial depletion syndrome, a rare and grave chromosomal condition that weakens his muscles. No successful cure is yet available, but he is eligible to receive an innovative treatment in the U.S. called nucleoside bypass therapy.

London’s Great Ormond Street Hospital, however, won’t allow Charlie’s parents, Connie Yates and Chris Gard, to remove him for the trip overseas– even after more than $1.5 million has been raised with a GoFundMe campaign, to cover medical expenses and travel.

The April 11 court decision by Justice Nicholas Francis backed the position of the hospital “bosses” (as the Brits term the hospital bureaucracy) that Charlie’s ventilator be shut off, and he be allowed to “die with dignity.”

But the modern definition of dignity is too often infected with subjective “quality of life” assessments and rationed care considerations.

The attorney for Charlie’s appeal is Charles Da Silva, and the granting of this appellate review reflects a legal analysis that the parents can possibly prevail.

Connie and Chris are desperate that their parental rights be upheld. They are not claiming the therapy will cure Charlie, but that it has shown some success and Charlie’s participation will aid the research. The parents have stated:

“If there is no improvement we will let him go. We just want to give him a chance. Charlie is still strong and stable. He is growing more beautiful by the day.”

The huge outpouring of support from the public is quite touching, including candlelight vigils, and letters storming Parliament as registered on social media at #charlie’s fight and www.charliesfight.org.

The public believes Charlie’s parents should be in charge of their son… will the Court of Appeal see it that way?

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Charlie Gard, who suffers from a rare, life-limiting chromosomal condition that weakens his muscles, will turn 9 months on Thursday, in the Great Ormond Street Hospital (GOSH) of London.

But the raging battle over treatment options–and whether the government hospital service has sole medical authority over those decisions–is far from over even though a High Court ruling last month defends death for Charlie.

His parents, Connie Yates and Chris Gard, are devastated that their decision-making rights over Charlie’s care have been crushed. They met today’s deadline to file a legal complaint to prevent Charlie from being taken off life-support. According to Britain’s The Sun, a new legal team has been hired and made the required application.

No time line for court acceptance of the appeal has been announced.

Chris and Connie have been constantly at Chris’s bedside at GOSH since October. They are currently being prevented from taking him to the United States for an innovative treatment called nucleoside bypass therapy. The treatment has not yet been published, according to Connie, but has shown success. It involves administering natural compounds to remedy the mitochondrial depletion syndrome Charlie suffers.

Many thousands of well-wishers on social media have encouraged his parents, and pledged over $1.3 million pounds (roughly $1.7 million dollars) to Charlie’s GoFundMe account to cover expenses for the overseas trip.

precious Charlie

Yet on April 11, the U.K. High Court ruled against the parents, holding that GOSH could keep Charlie, shut off his ventilator, and allow the baby to “die with dignity” on the grounds that the proposed U.S. treatment could not “cure” him.

FUTILITY JUDGMENTS
The idea that any court can deny parents the right to remove their son from a hospital seems absurd and unjustifiable. But it’s a logical outgrowth of the reality of rationed care— particularly in Britain with the National Health Service– coupled with changes in medical ethics.

It is sadly no longer the assumption that medical facilities feel bound to sustain a patient’s life. Instead, doctors can delegate treatment as not to be administered because it will

  • not cure the underlying disease; and /or
  • not produce an “acceptable” quality of life.

Such care is alternatively called “non-beneficial,” “medically inappropriate,” or “futile.” A new law in Kansas, Simon’s Law, requires hospitals to disclose any futility policies upon request.

When the medical elite deem that certain patients should be denied medical care, those who object are considered as throwing a “monkey wrench” in the system. Charlie’s parents’ attorney found an email from a doctor at GOSH who called the parents a ‘spanner in the works’ due to their exploration of all medical options available internationally.

GOSH asserts that further treatment would unnecessarily “prolong” Charlie’s suffering. In an interview on British ITV, Connie said:

“If there is no improvement we will let him go. We just want to give him a chance. Charlie is still strong and stable. He is growing more beautiful by the day.”

Appeal judges will be considering whether Charlie’s parents have a reasonable chance of success before allowing a full appeal hearing to be held. The Mail reported the couple’s new attorneys may be looking at using human rights laws to defend their case.

“Before he was hired, the couple’s new lawyer, Charles da Silva, wrote on his firm’s Facebook page that the High Court ruling highlights that not only doctors but judges can get it wrong too,” the Daily Mail reported.

The world’s parents are watching. Stay tuned.

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Sen. LaTurner

Sen. Pilcher-Cook

Last night, the Kansas Senate approved Simon’s Law, 29-11, despite a last-minute hostile amendment from Sen. Barbara Bollier (R-Mission Hills).

All but three Republicans voted in favor of this Kansans for Life-priority bill while eight of nine Democrats voted in opposition.

Simon’s Law insures that parents are the decision-makers when it comes to Do Not Resuscitate (DNR) orders for their critically ill children.

Sen. Jacob LaTurner (R-Pittsburg) carried the bill on the Senate floor, and opposed the Bollier amendment as undermining the key purpose of the bill.

Baby Simon

Simon’s Law was introduced last year and passed the Senate but wasn’t heard in the House before time ran out on the session. It is named in honor of infant Simon Crosier, whose life ended when he was denied resuscitation in a hospital, after a DNR was put on his chart without the knowledge or consent of his parents.

Parents have been uniformly shocked and disturbed to discover that DNRs could be assigned to their children without their consent. In a number of cases, families testified that their children were treated as “not worthy of life” due to chromosomal disorders. Simon had Trisomy 18.

During Thursday evening’s Senate floor debate, pro-life champion Sen. Mary Pilcher Cook brought up the issue of medical discrimination. She cited a book by former U.S. Senator Rick Santorum and his wife, Karen.

In “Bella’s Gift: How One Little Girl Transformed Our Family and Inspired a Nation,” the Santorums chronicle medical discrimination against their daughter, Bella, who, like Simon, has Trisomy 18. Sen. Santorum recounts how Bella had to be hospitalized repeatedly and for six years, medical personnel continually advised the Santorums to let her die.

Sen. Pilcher Cook warned that medical discrimination exists, and cited last year’s study in which 25-76% of responding pediatricians said they were comfortable issuing DNRs unilaterally. That is the situation Simon’s Law is meant to end.

Vocal support for parental rights during the debate on Simon’s Law also came from pro-life Senators Rob Olson (R-Olathe), Dennis Pyle (R-Hiawatha), and Steve Fitzgerald (R-Leavenworth).

Sen. Pyle

Sen. Fitzgerald

This year, Kansans for Life collaborated with medical and disability experts to produce a slightly amended version of Simon’s Law, which was commended during floor debate.

Substitute for SB 85 requires that parents be informed orally and in writing, before an order for a DNR can be placed in the medical chart of an unemancipated minor.

The delivery of that information must be recorded on the chart. Parents can allow that order to proceed or refuse it.

During conflict resolution, the child’s life must be preserved. This provision was emphasized by Sen. LaTurner as particularly important.

Sub SB 85 also requires that hospitals and medical facilities with written “futility” policies about when life-sustaining care will be denied, must disclose them to patients (or prospective patients) upon request.

Simon’s Law will have a hearing in the House Federal & State Affairs committee on Tuesday. In the House, Simon’s Law has the sponsorship of 30 State Reps, including three practicing physicians.

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no-physician-asst-suicideThe American Medical Association (AMA) is in the process of considering whether to forego its opposition to assisted suicide and “go neutral.”

At its summer meeting, the group voted to further study the issue, after rejecting a proposal from the Louisiana delegation that would retain the AMA’s opposition to physician-assisted suicide.

Kansans for Life is sponsoring a citizen petition to urge the AMA not to abandon its long-held opposition to physician-assisted suicide. Please sign the petition here today and circulate on social networking. It is urgent that physicians hear from thousands of concerned Americans.

National Right to Life’s NRL News Today continues to cover this issue. It featured a November commentary about the AMA retreating “into the mirage of moral neutrality,” the position articulated by Dr. Frederick White, chair of the International ethics committee with the Willis Knighton Health System in Shreveport, Louisiana. White writes:

“The central premise of physician-assisted suicide is this: A doctor should be allowed to kill certain patients. …
Despite what advocates of physician-assisted suicide claim, this debate is not about autonomy. Patients with terminal conditions already have the autonomy to direct limitation or withdrawal of life-sustaining care, to request palliative and hospice care, and to even take their own lives. Physician-assisted suicide is about a method of death, about whether that method of death should allow a conspirator, and about whether that conspirator should be a doctor.
…on the most pressing life-and-death issue of our day, doctors cannot take a pass. They must choose — either a doctor will or will not be allowed to kill certain patients. “

Recently NRL News Today posted an encouraging article, announcing that the American Psychiatric Association (APA) has taken a strong position that

a psychiatrist should not prescribe or administer any intervention to a non-terminally ill person for the purpose of causing death.

This implies that it is not ethical for a psychiatrist to help a non-terminally ill person to commit suicide, either by providing the means or by direct lethal injection, as is being currently practiced in The Netherlands and Belgium.

Although this binds only APA members, the APA is one of the world’s most influential professional bodies. The World Psychiatric Association (WPA) is considering a similar statement.suicide-control

FALSE ASSURANCE of CONTROL
Prolific author and euthanasia opponent, Wesley J. Smith, debunks the popular idea that medicalized killing will be “a last resort” reserved for the terminally ill, “to be deployed only in the context of a long-term relationship with a caring doctor and, even then, strictly when there is no other way to alleviate suffering.”

Smith reminds that no law requires objective proof of unalleviable pain and suffering before death can be administered.  So-called “protective guidelines,” are false assurances, because as it works out in countries such as Belgium and the Netherlands, “doctor-facilitated suicide is available to the dying, the disabled, the elderly, the mentally ill—and even some married couples who choose death over the prospect of future widowhood.

Read more about physician-assisted suicide from NRL News Today here.

TAKE ACTION: A position of “neutrality” from the AMA on physician-assisted suicide is unacceptable cowardice. Sign the KFL petition to the AMA today!

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pp money (2)The Kansas Legislature adjourned for the year in the wee hours of Monday morning, with two big victories in the area of pro-life healthcare. UPDATE, May 13: Gov. Brownback signed both measures into law this week.

Disappointingly, the time clock hurt us on achieving Simon’s Law, which will be explained further on in this post.

Senate Bill 248, formerly SB 436 (KFL testimony here) was enacted late Sunday evening. It enacts, as permanent law, the “Huelskamp-Kinzer” language prioritizing Title X federal reproductive health money to full-service public health clinics.

Planned Parenthood hates this mechanism because they do not qualify as full-service and it’s a big chunk of Kansas money they no longer get. Planned Parenthood filed a legal challenge against the prioritization but lost in federal appeals court. Title X Kansas funding now surpasses the pre-litigation level.

Sen. Masterson, Sen. Tyson

Sen. Masterson, Sen. Tyson

Huelskamp-Kinzer language is a model way for states to improve healthcare for the indigent, by funneling Title X money to comprehensive services at “safety net” clinics and public hospitals.

State Sen. Caryn Tyson (R- Parker) carried the bill and Sen. Ty Masterson (R-Andover) shepherded it to completion. The vote was 87-34 in the House and 32-8 in the Senate.

MIDWIVES’ ROLE IN ABORTION STOPPED
Kansas passed a large bill, HB 2615, with a number of sections regulating health care services and providers. The section governing the independent practice of midwives includes pro-life language:
            Nothing in the independent practice of midwifery act should be call midwifeconstrued to authorize a certified nurse-midwife engaging in the independent practice of midwifery under such act to perform, induce or prescribe drugs for an abortion.”

There was quite a bit of educating to do on this subject as some legislators just didn’t want to believe that nurse midwives– those most intimately dedicated to nurturing labor and delivery– would actually do abortions.  Yet the National Abortion Federation has long had a strategy for increasing “access to abortion” (i.e. more babies aborted) by expanding the scope of practice of lower level health care professionals. Read more on this topic, including a memo from National Right to Life Director of State Legislation, Mary Spaulding Balch, J.D. here.

Sen. O'Donnell, Sen. Pilcher Cook

Sen. O’Donnell, Sen. Pilcher Cook

Sen. Sen. Michael O’Donnell (R-Wichita) and Sen. Mary Pilcher Cook (R-Shawnee) were real champions on insuring the abortion ban stayed with the midwives’ regulation. The House passed the final healthcare bill 115-7, but only after Senators voted 26-12 to insure that the final version kept the pro-life language.

TIME CRUNCH HURT SIMON’s LAW
This year’s Kansas legislature was dominated by a budget crisis, and in an unprecedented move, leadership cancelled two weeks of legislative session time.  This really doomed House consideration of Simon’s Law, despite heroic

Sen. Laturner, Rep. Pauls

Sen. LaTurner, Rep. Pauls

attempts by bill sponsor, Sen. Jacob LaTurner (R-Pittsburg), vice-chair of the Senate Federal & State Affairs committee, and Rep. Jan Pauls (R-Hutchinson), Chair of the House Federal & State Affairs committee, to maneuver it to get a House vote.

Simon’s Law is a vital bill to protect parental rights in preventing the unilateral issuance of Do Not Resuscitate (DNR) for minors. The measure has gained tremendous public enthusiasm, and secured an amazing 37-3 bipartisan vote in the Kansas Senate. With support of pediatric specialists across the country and four pro-life medical groups, Kansas ought to be enacting Simon’s Law next year.

baby SImon Crosier died to a secret DNR

baby Simon Crosier died due to a secret DNR

Lest too rosy a picture be painted about Simon’s Law, however, it must be noted that not one Kansas medical facility or physician group officially testified about the measure—pro, con or neutral—and many well-paid medical lobbyists out of the public eye pushed to kill the bill. Apparently, the current ability to issue DNRs unilaterally is sadly a power that too many medical entities do not want brokered by parents.

The movement to educate the public about discrimination in life-sustaining procedures has just begun and the entire nation needs Simon’s Law.

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Heart stethPro-lifers across the nation have been reading our series of articles on the “Faces & Facts of Simon’s Law,” and are urging Kansas to protect children and empower parents by enacting this vital measure.

The state legislature returns to work Wednesday following a short recess. The Kansas Senate has already passed SB 437, Simon’s Law, by a notable bipartisan 37-3 vote last month. The bill will prevent minors from being denied life-sustaining treatment without parental permission and will require, upon request, disclosure of hospital policies on “futile care.”

Recently, four medical associations have published their strong support for Simon’s Law, see here. The following are some excerpts from their endorsements:

  • ACPEDSThe American College of Pediatricians informs that, “Once inconceivable, the practice of hospital staff placing a do not resuscitate (DNR) order on a child’s chart without the informed consent of the child’s parents or legal guardian is on the rise… increasingly predicated upon the ill-defined and subjective concept of ‘quality of life’ with one or more disabilities considered intolerable.”
  • AAPSThe Association of American Physicians & Surgeons writes, “care judged by some to be ‘futile’ is often life-saving, even if it does not restore full function… [When] there is a time when medical intervention provides no benefit, it is unethical and should be unlawful for a medical facility to determine that point unilaterally.”
  • NAPNThe National Association of Prolife Nurses asserts that parents have “a right to full disclosure and participation in the healthcare decisions of their disabled or severely ill children.”
  • The Kansas City (Kansas/Missouri) Guild of the Catholic Medical Association believes Simon’s Law “recognizes the right practice of medicine… the sacredness of life and the primary role Cath guildparents have in caring for a child. [F]acilities or practitioners cannot and should not determine that a patient’s life is no longer deserving of medical care.”

These medical group endorsements acknowledge that DNRs are very often being issued due to negative judgments about the kind of life the child will live—not upon a medical assessment of impending death. In shorthand, such judgments about ‘futility’ are qualitative, not physiological.

The families that submitted testimony for Simon’s Law recounted that too many medical personnel clearly viewed their child as a victim of disabilities, without a rewarding life–a view that the family vigorously disputed.

Neonatologist McCaffrey

Dr. McCaffrey

Neonatologist Martin McCaffrey regularly treats severely ill infants and counsels many families about Trisomy 18 and other related chromosomal conditions. He advises:

“ A medical team using its subjective prediction of future quality of life as criteria to make life and death decisions,and  forcing that determination is a tyrannical enforcement of prejudice towards children with disabilities.

The case which prompted Simon’s Law legislation is a prime example of such bias.

It is my sincere hope that Simon’s Law will pass. The only physicians and hospitals that would be impacted by this legislation are those employing unilateral [orders not to resuscitate].”

Knowledgeable medical groups and individuals agree that Simon’s Law is a necessary corrective measure.

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