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Posts Tagged ‘Simon’s Law’

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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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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Charlie Gard with parents

Days after Kansas achieved a landmark law for parents’ decision-making authority governing hospitalized children, another baby and his parents are losing their fight with a London hospital to bring their ailing son to the U.S. for treatment.

On April 7, Kansas’ Gov. Sam Brownback signed “Simon’s Law,” to insure parents can reject hospital DNR (do not resuscitate) orders for their children. The law was instigated by the parents of Simon Crosier– an infant denied the right to live by a hospital DNR — based on bias against Simon’s life-limiting condition, Trisomy 18.

Simon Crosier

During consideration of the bill, and despite documented evidence to the contrary, there were plenty of denials that hospitals would ever overcall parents’ wishes on treatment to preserve life.

Yet consider this currently-unfolding tragic scenario as reported by the BBC and other UK media.

Connie Yates and Chris Gard’s eight-months-old son, Charlie, has been in Great Ormond Street Hospital (GOSH) hospital since October for treatment of a rare condition that causes progressive muscle weakness. Charlie is believed to be one of only 16 known babies ever to have had this mitochondrial-depletion disease.

As reported by the BBC April 3, there was “no evidence that he is in pain on a regular basis.”

Charlie’s parents have now raised over 1.3 million pounds through a “GoFund Me” campaign to be able to bring Charlie to the U.S. for pioneering treatment called nucleoside therapy.

Ms. Yates said, “the support and phenomenal kindness of countless people has been a source of strength.”

“We just want to have our chance. It would never be a cure but it could help him live. If it saves him, amazing. I want to save others. Even if Charlie doesn’t make it through this, I don’t ever want another mum and their child to go through this.”

But the London hospital won’t let them remove Charlie, concluding there is no “accepted cure.”

The parents took legal action but the High Court sided with the hospital on April 11. The BBC headline was dire, “Doctors can withdraw life support from a sick baby with a rare genetic condition against his parents’ wishes.”

The language used to officially overcall the rights of parents uses now-all-too-familiar terms.

  • The GOSH attorney argued that “world-renowned” experts agreed the child should not be given long-term life support as his “quality of life” is “so poor.”
  • UK doctors have insisted there is no “accepted cure” and Charlie should be allowed to “die with dignity.”
  • The attorney appointed to represent Charlie, said proposed treatment in the U.S. was “purely experimental” and continuing his life support would only “prolong the process of dying”.

Justice Francis

High Court Justice Nicholas Francis of the Family division made the fateful ruling that Charlie be moved from life-support to a palliative care regime and be allowed to “die with dignity.” And even after Justice Francis admitted that experimentation might benefit medical science, he asserted it could not “benefit” Charlie.

Justice Francis had seen Charlie at GOSH, and said it has been his “sad duty” to apply the law relating to disagreements between parents and hospitals. He expressed his “complete conviction” that it was in the “best interests” of the child to let him “slip away.”

But this was no mere settlement about what GOSH could or should provide.

This is an imprimatur on whether a child with a life-limiting condition, once admitted to a hospital, can leave!

On Tuesday, April 25, in the House of Commons, MP Ruth Cadbury spoke up for the plight of her constituents, Charlie’s parents. She urged the justice secretary to use “any powers to intervene…to do the right thing.”

MP Cadbury

The plea was immediately rejected.

Charlie’s parents, Chris and Connie, “are devastated” by the decision, and have until Tuesday, May 2, to file an appeal, said their attorney, Laura Hobey-Hamsher.  “They are struggling to understand why the court has not at least given Charlie the chance of treatment in America.”

The neurologist who would oversee the experimental treatment had testified to the court that while Charlie was in the “terminal stage” of his illness, treating him would be compassionate.

That notwithstanding, the hospital refuses to discharge Charlie and the High Court has decreed Charlie move to “a palliative regime.”

Tragically, British hospitals and government have ruled that Charlie Gard must die.

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Sheryl Crosier and Gov. Brownback share a spontaneous hug after the official signing of Simon’s Law.

Appreciative parents, legislators and pro-life /pro-family advocates surrounded Kansas Gov. Sam Brownback this morning as he formally signed Simon’s Law.

Simon’s Law passed the Kansas Senate 29-9 on March 16 and the House by 121-3 on March 31. The victory culminated a grassroots campaign among families whose children with chromosomal disorders were denied life-saving care.

Simon’s Law is a very significant pro-life measure in the area of selectively “rationed” care and medical discrimination against children with life-limiting diagnoses. Simon’s Law:

  • validates both the medical advisory role and parental rights;
  • ends “secret” DNRs based on “quality of life” judgments;
  • buttresses dignity for children with disabilities;
  • exposes policies denying life-saving care; and
  • combats erosion of the Sanctity of Life ethic in our culture.

As catalogued in an award-winning 2014 short documentary, “Labeled,” a frightening number of children with chromosomal disorders are denied life-saving medical treatment.

Trisomy 18, Trisomy 13, and related genetic disorders have been routinely labeled “lethal” and “incompatible with life.” As a result, children with these conditions almost automatically receive DNR (Do Not Resuscitate) orders without parental consent.

That was the experience of Sheryl and Scott Crosier, who lost their infant son, Simon, six years ago.

Kansas pro-life legislators surround the Crosier family (left) as Gov. Brownback officially signs Simon’s Law with Frank & Ann Barnes at far right.

Simon had a diagnosis of Trisomy 18. At age three months, he had what proved to be a fatal apnea attack in the hospital.  While his parents held him, they waited in numbing shock as no emergency aid came to the rescue.

Later, Sheryl and Scott found that a DNR order was in Simon’s chart, which neither parent knew about nor approved.

After Simon’s death, Sheryl and Scott reviewed his chart and discovered Simon had only been given “comfort feeds” which are not sufficient for growth and development. He had also been given medications incompatible with his apnea. These revelations fueled their anger and their resolve to do something.

A LAW TO ALERT PARENTS
The Crosiers believed legislation was needed to

  1. stop the issuance of unilaterally-issued DNRs, and
  2. expose the practice of hospital futile care policies dictating scenarios in which life-saving treatment is withheld or withdrawn.

They began in Missouri in 2014, but certain medical interests were opposed and the measure has not yet been able to secure committee passage.

Kansans for Life  took up the original bill last year, and redrafted it with aid from NRLC’s Robert Powell Department for Medical Ethics. After an impressive win in the Kansas Senate, there was insufficient time for action in the House in the 2016 legislative session.

This year, the bill was refiled amid delicate negotiations between Kansans for Life  and hospital staff and hospital ethicists. The result was a more narrowly focused bill that was able to bridge entrenched medical objections.

The Crosiers approved the revisions and came to testify at the Statehouse with 12-year-old son Sean. The sadness and sense of betrayal of Simon’s death is still very real for them. Sean testified about how his excitement at being a “big brother” tuned into “pain and heartache” that still endures.

Parents of Trisomy kids rejoice in the signing of Simon’s Law

NATIONAL IMPACT
Frank and Ann Barnes from North Carolina also traveled to Topeka to celebrate the bill signing today. Their daughter Megan, was profiled last year in the NRLC News Today

Yes, Megan had limitations, but her mother described her as “content” and “knew she was loved.” At age nineteen, Megan was hospitalized for virus-caused dehydration, in a pediatric intensive care unit at a major teaching hospital. She was never to return home.

Due to her Trisomy 18 condition, a DNR had been verbally ordered into her chart by an “attending” physician without parental notice or consent. Megan was dead four days later.

Ann and Frank are actively involved with S.O.F.T., a nationwide family support group for Trisomy 13, Trisomy18, and related disorders. At today’s signing and press conference, Gov. Brownback invited them to talk about their daughter and the impact of her death.

As of July 1, Simon‘s Law in Kansas will mandate:

  1. Parents receive both written and verbal notification before a Do Not Resuscitate Order (DNR) is placed in a child’s medical file. Parents can then allow the order– or refuse it orally or in writing. Court access for disputes is delineated and the child remains safe during resolution.
  2. Parents and prospective patients of any age have the right to request and receive hospital policies concerning “denial of life-saving care” (sometimes referred to as medical futility policies). There is no mandate that hospitals have such policies.

See KFL Simon’s Law video here and more on the KFL youtube channel.

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The American College of Pediatricians has congratulated the Kansas legislature for the passage of Simon’s Law, “on behalf of our most vulnerable patients and their families.”

In a letter this week to Kansas Gov. Sam Brownback, the College’s president,  Dr. Michele A. Cretella, urged him to sign the first-in-the-nation bill, which is exactly what will happen Friday morning in a public ceremony in the Capitol at Topeka.

As a backdrop, she cites a Feb. 2014 article in the journal Pediatrics, for her assertion 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.” (see more here)

Infant Simon Crosier with his brothers before his death by secret DNR

Dr. Cretella congratulates that, “Simon’s Law is designed to prevent this practice. It will guarantee parents their inalienable right to participate in the healthcare decisions of their children. The willingness of some physicians to circumvent the child’s and parent’s or guardian’s consent regarding disagreement over medical care is ethically concerning. This is because medical decision-making is increasingly predicated upon the ill-defined and subjective concept of ‘quality of life’.”

She continues, “While a life with one or more disabilities may be considered intolerable by some, there are many children and adults with one or more severe disabilities who believe otherwise, as do their families. A medical team of highly accomplished, able-bodied individuals that relies upon its subjective and imperfect prediction of a child’s potential quality of life in the future, as a basis for its decision-making, is likely to be biased against preserving the life of a disabled child. Allowing these medical teams to then force that biased view on a patients and his family via unilateral DNR, approaches the practice of euthanasia.”

This is the context of why Simon’s Law is a great step in reclaiming a cultural respect for the dignity of human life. Dr. Cretella explains,

“Simon’s Law acknowledges every human being’s inherent dignity and the fact that patients and their guardians– most especially parents of minors– have the right to know policies concerning the ‘denial of life-saving care’.”

Dr. Cretella

In conclusion, Dr. Cretella writes, “Moreover, the requirement that patients themselves and/or their parents or other legal guardian receive both written and verbal notification before a Do Not Resuscitate Order (DNR) is placed in a medical file respects the principles of beneficence, nonmaleficence, justice and autonomy.”

Kansans for Life appreciates the support for Simon’s Law from such a respected group… one that defines itself as designed “to promote a society in which all children, from the moment of their conception, are valued unselfishly.”

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Crosier family before Simon’s death

Kansans for Life’s top priority pro-life bill, Simon’s Law, has been sent to a receptive Gov. Sam Brownback for his signature.

Kudos goes to the tireless efforts of the Scott and Sheryl Crosier family for launching the grassroots campaign, in their infant son’s name, to enact a law which will save lives and solidify parental rights.

In final action Thursday, the Kansas House voted 121-3 in favor of Sub SB 85, Simon’s Law. The measure had already been approved 29-9 by the Senate two weeks ago, and requires:

  • Parents receive both written and verbal notification before a Do Not Resuscitate Order (DNR) is placed in a child’s medical file. Parents can then allow or refuse the order.
  • Parents and patients of any age, upon request, have the right to receive hospital policies concerning “denial of life-saving care” (sometimes referred to as medical futility policies). There is no mandate that hospitals have such policies.

Rep. John Whitmer (R-Wichita) carried Simon’s Law on the House floor with precision and in a heartfelt manner.  He recapped that Simon Crosier was a medically-fragile infant with Trisomy 18 whose death was caused by denial of resuscitation because a DNR was placed in his medical file –without his parents’ knowledge or consent.

Rep. Brim

Rep. Shelee Brim (R-Shawnee) was first up to speak in support of Sub SB 85 during House debate Wednesday. She referenced a close friend who had been urged to abort a child due to a “dire” diagnosis of anencephaly and spina bifida. Her friend refused and that ‘child’ is now twenty. In remarks committed to the House Journal, Rep. Brim said,

Little blessings like Simon may be on Earth for a matter of minutes, hours, or years. These vulnerable babies are not yet able to speak for themselves and I feel that their parents are their voices– NOT the doctors. We may not know the reason for the brevity of a baby’s life, but there is a reason. Simon’s life taught an important lesson and my hope is that we learn from this.”

Rep Dan Hawkins (R-Wichita), chairman of the House Health and Human Services Committee, commended the efforts to negotiate the final language with medical and disability experts and produce what is “not only a good bill, but a great one.”

Special thanks goes out to Representatives Kevin Jones (R-Wellsville) [see video] and Randy Powell (R-Olathe) [see video] who were the chief sponsors of the House bill, joining with 28 co-sponsors, including three practicing physicians. (See more Simon’s Law support videos here.)

Rep. Jacobs

Rep. Trevor Jacobs (R- Fort Scott) explained his vote in support of Simon’s Law,

I sincerely believe that one of government’s most essential and valuable responsibilities is to protect the life of its weakest and most vulnerable citizens, and that is the life of a child. In the Hebrew language, “Simon” means “to listen or to hear.” I have heard the cry for help and for justice [and] stand for the sanctity of life.”

Kansas stands alongside the Crosier family and other families who testified about victimization by medical discrimination and unilateral DNR placements. We hope other states are now encouraged to enact Simon’s Law.

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Simon Crosier & parents

The weather outside in the capital city of Kansas today was dreary and rainy, but a raft of sunshine could be felt under the capitol dome this morning when the Kansas House passed Simon’s Law with a unanimous voice vote.

Tomorrow,  in “final action,” the individualized vote tally will be recorded. Simon’s Law, Sub SB 85, already passed the Senate 29-9-2 March 16, and it will be heading for signing to a receptive Gov. Sam Brownback.

The importance of this measure for restoring dignity to, and protection for, medically marginalized infants and children should not be understated.

Testimonies in support of Simon’s Law came from numerous families whose children were treated disrespectfully and even denied life-sustaining care due to being “labeled” as “incompatible with life.”

The bill was named for Simon Crosier, whose parents have been conducting a grass roots campaign against the imposition of DNR (Do Not Resuscitate) orders without parental consent. His story was part of the introductory remarks given by the bill-carrier of Sub SB 85, Rep. John Whitmer (R-Wichita).

Rep. Whitmer

“Simon Crosier was born on September 7, 2010. On his 3rd day of life he was diagnosed with full Trisomy 18, a chromosomal disorder, and his life –and sadly the quality of his medical care and treatment– changed dramatically after that diagnosis. You see, many doctors declare Trisomy 18 as “incompatible with life,” despite evidence of the contrary and of course those who survive for months, years and even decades.

Simon drew his last strained breath at 10:45am on December 3rd, 2010. Imagine watching your child take his last breaths, his oxygen saturation levels plummeting and the medical professionals doing nothing to intervene. It wasn’t until AFTER Simon’s death that his parents discovered there was a Do Not Resuscitate (DNR) order in his medical file which explains why the medical professionals stood around and did nothing.

His parents did not know about, nor did they consent or even discuss this with ANY of the medical personnel prior to the execution of that DNR order. Passage of Senate bill 85 would prevent any other family from having to go through what the Crosier family has had to endure.

Specifically, Senate bill 85 addresses: instituting DNRs and similar physician’s orders; petitions to enjoin; resolution of parental disagreements; required disclosures of policies by medical facilities and physicians; and existing law concerning emergency health care. Simon’s Law goes a long way toward ensuring that medically fragile children are not discriminated against because of a diagnosis.”

Kansans for Life congratulates the expert presentation and management of debate by Rep. Whitmer and was edified at the variety of legislators speaking in defense of this bill. More tomorrow.

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