Child's [Court Appointed] guardian supports doctors, hospital

BYLINE: Mary Ann Roser
DATE: May 9, 2007
PUB: Austin American-Statesman (TX)
EDITION: Final
SECTION: Metro & State
PAGE: B01

A court-appointed guardian for Emilio Gonzales, an 18-month-old on life support at Children's of Austin, has filed a legal brief that backs the doctors and the hospital in their plans to stop treating the child, against his mother's wishes.

Emilio, who has been on a respirator at Children's Hospital since late December, will continue receiving treatment until Travis County Probate Judge Guy Herman makes a final ruling on the dispute over the boy's care.

Herman postponed a hearing scheduled for Tuesday until May 30 at the request of attorneys because three witnesses whom lawyers for Children's Hospital planned to call were unavailable.

The guardian ad litem, Austin lawyer, Jody Helman, filed his 52-page brief with the court late Friday in anticipation of presenting his recommendations to Herman during the hearing.

The brief says the hospital and doctors have followed federal and state laws governing end-of-life care. It adds that "there is no constitutional right to medical treatment and Emilio does not have a fundamental right to receive life-sustaining treatment."

Helman's findings are likely to get strong consideration from the judge, because Herman chose Helman to investigate the case and make recommendations to the court.

Doctors say Emilio has Leigh's disease, a rare neurometabolic disorder that causes the central nervous system to collapse.

Emilio's mother, Catarina Gonzales of Lockhart, and her attorney, Jerri Ward, question that diagnosis, and Helman says in his brief that no definitive diagnosis has been made. Even so, doctors report that Emilio's brain is withering and that he is not responsive, a point also contested by his mother.

Gonzales, Ward and her co-counsel, Martin Cirkiel of Round Rock, believe that the doctors should continue treating Emilio. But doctors say that because Emilio has no hope of recovery, and aggressive treatments are potentially painful, he should be allowed to die in peace.

Once doctors give notice that they want to stop treating a patient against the family's wishes, they can start a process in which the family has 10 days to transfer their loved one to another facility. The hospital and the court have given Gonzales and her supporters more time to find another facility, but months of searching have failed.

Helman's brief methodically attacks Ward's arguments that doctors and the hospital have violated the rights of Emilio and his mother by seeking to unhook him from the respirator.

Ward has accused doctors and the hospital of discrimination against the disabled and contends that the state law that allows doctors to overrule the treatment decisions of loved ones when conflicts arise is unconstitutional, among other allegations.

"It's real surprising to me that a guardian ad litem would care more about the rights of doctors and the hospital than about Emilio," Ward said.

Michael Regier, general counsel for the Seton Family of Hospitals, which runs Children's Hospital, said he was "delighted the guardian's position on the legal issues are in sync with the hospital's."

Email address for Judge Guy Herman:  maroser@statesman.com 445-3619

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Emilio Gonzales

BYLINE: AMERICAN-STATESMAN
DATE: May 22, 2007
PUB: Austin American-Statesman (TX)
EDITION: Final
SECTION: Editorial
PAGE: A08

Emilio Gonzales -Baby Emilio to the world- was born blind, deaf and with a fatal and incurable disease, but he posed a deeply troubling question in his 19 short months of life.

Baby Emilio was the intersection where medical ethics, parental rights, politics and the common good collided. He passed away last weekend as his mother, Catarina Gonzales, and her attorney fought to keep Children's of Austin from disconnecting the respirator that had been keeping him alive.

Doctors at Children's Hospital diagnosed Emilio with Leigh's disease, a fatal condition that causes the central nervous system to collapse. His physicians and the hospital's ethics committee felt the costly, aggressive care was causing him to suffer when he had no chance to survive.

Emilio's mother disagreed and, with the support of right-to-life advocates, sued to keep the hospital from terminating his care. At the heart of the argument is a 1999 state law, the Advance Directives Act, that gives physicians the authority to end extraordinary care in hopeless cases.

Because of the Gonzales' situation, that law has been attacked by advocates who believe it gives doctors power over a family's rights and desires. A bill before the Legislature would extend the time families have to move a patient before care is terminated and would give them more time to prepare a case for continued care.

Emilio's case was not just a test of the Texas law, it was also a test of the common good. A charitable hospital - Children's Hospital is part of the Catholic church's Seton Healthcare Network - should not be forced to provide expensive, extreme care in cases deemed hopeless.

A demand for extraordinary measures is not infinite. Public, private and charitable hospitals should not be made to provide special care when it is found to be unreasonable. The resources expended on Emilio were enormous.

It required a lot of doctors, nurses and expensive equipment to keep Emilio alive, all of it paid for by Medicare and Medicaid. Those resources devoted to an irreversibly terminal patient could have been allocated to others who stood to benefit from them.

These are difficult decisions. Catarina Gonzales, who says she can't have other children, suffered along with her only son. She wanted him to live as long as possible, and all who followed Baby Emilio's story felt her anguish.

But Children's Hospital did all it could and its decision to discontinue care was made after a careful and studied analysis of Emilio's condition. The Texas law worked as it is supposed to work, though revisions proposed by lawmakers this session to extend the period for argument and the time allotted to see if another facility will take the patient are good ones.

Baby Emilio's situation placed in stark relief the clash of rights in life-or-death decisions. Emilio's family's wishes could not be considered in a vacuum; Children's Hospital, the Catholic church and the community at large have rights and obligations, too.

Emilio is at rest, but the debate over conflicting rights continues as advocates challenge the Advance Directives Act as unconstitutional and discriminatory against people with disabilities. It's a debate likely to escalate as medical care and research continue to advance in extraordinary ways.

Emilio's case presented Austin and the world with a fundamental issue about life and death. Because no right is absolute, the discussion will be with us for years to come.

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Like life, death is sacred

BYLINE: Bishop Gregory Aymond,
DIOCESE OF AUSTIN
DATE: April 15, 2007
PUB: Austin American-Statesman (TX)
EDITION: Final
SECTION: Editorial
PAGE: G03

The heart-wrenching situation regarding Emilio Gonzales, a 17-month-old child at Children's Hospital, has garnered national attention. Beside the heavy emotions, the issue of determining the use of extraordinary medical treatment in the face of such difficult situations is not a new dilemma. In my own family, I have been part of making end-of-life decisions for both of my parents and for my 24-year-old nephew, who was involved in a traumatic vehicle accident a few months ago. I empathize with Emilio's mother as she attempts to do what is best for her child and I remember her in prayer daily.

The terms "extraordinary" (disproportionate) and "ordinary" (proportionate) care are used by Catholic moral theologians in defining ethically required medical care and ethically optional medical care. Generally, if a medical procedure carries little hope of benefit and is excessively burdensome, Catholics - and Catholic institutions - are not morally obligated to pursue that procedure. Even Pope John Paul II was adamant that he would not accept extraordinary medical care as his health declined.

Suicide, euthanasia and assisted suicide are not morally acceptable; they violate the very sacredness of human life. We hold the teaching on the sacredness of life as fundamental. And we believe that our lives do not end with death, that we are called to everlasting life. Catholic teaching on ethically required medical care states that we should use all reasonable means to preserve human life and to promote the profound dignity that belongs to it. Yet we recognize that sometimes we should not use technology if it inflicts greater suffering on loved ones and holds them back from being able to go home to God.

The decision to forego extraordinary medical care must be made by the patient or the patient's proxy with a great deal of prayer and consultation with ethicists, spiritual mentors and health care professionals. In some situations, we would be obligated to use extraordinary medical care. There is no "one size fits all."

Physicians have stated that Emilio's condition is irreversible and will result in his death. There is great concern that continued extraordinary treatment will only result in greater pain for Emilio, without curing or improving his condition. Based on this information and a review of the case by ethicists, moving to a "comfort care" plan for Emilio would be morally acceptable. Emilio would still receive food, water, pain medication and other "ordinary" treatment. Some compare Emilio's situation to Terri Schiavo's. They are very different; in the Schiavo case, ordinary means - food and water - were withdrawn, which caused her death.

In 1995's "The Gospel of Life," Pope John Paul II wrote, "To forego extraordinary or disproportionate means is not the equivalent of suicide or euthanasia; it rather expresses acceptance of the human condition in the face of death."

The late pope's teaching is carefully reflected in the "Ethical and Religious Directives for Catholic Health Care Services," a document used by Catholic hospitals in the United States.

Our first concern must be the well-being of Emilio, physically and spiritually, and that appropriate pastoral and spiritual care is offered to his family. I have offered to meet with Catarina Gonzales to offer my support and explain the teachings of the Catholic Church regarding end-of-life issues. I ask everyone to join me in praying for Emilio, his mother and those responsible for his care.

I cannot imagine the pain that Catarina Gonzales is experiencing as she faces terrible questions no mother wants to face. As Catholics, we believe in the sacredness of life from the moment of conception to natural death. The journey toward death is sacred, but often it is also painful and lonely.

Perhaps the most important gift that Emilio and his family offer to the rest of us is an opportunity to reflect on our own beliefs and concerns for how we - and our loved ones - live the last days of our natural lives and prepare to return to the loving God who created us.

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Emilio's life raises issues of care's cost

BYLINE: Mary Ann Roser
DATE: May 28, 2007
PUB: Austin American-Statesman (TX)
EDITION: Final
SECTION: Metro & State
PAGE: B01

Doctors who wanted to end life support for 18-month-old Emilio Gonzales at Children's Hospital of Austin said their concerns were about stopping his suffering - not about the cost.

But by the time he died, May 19, after 142 days in the intensive care unit, Emilio's hospital bill had reached $1.68 million. Some bloggers and callers to a hot line the hospital established to handle a flood of Emilio-related calls wondered about the cost of treating a patient who had no hope of recovery.

Because there was no hope for Emilio, "why don't we spend our money for children who can get better?" Vera Preston-Jaeger, a retired math professor who lives in Bastrop, asked in an interview.

Medical ethicists across the country said that even though physicians and politicians are squeamish about mingling discussions of money and end-of-life care, they expect those debates to only intensify as baby boomers age, health care resources become more scarce and cases like Emilio's capture headlines.

"Emilio Gonzales would be a very, very good example" in the ongoing debate, said Dr. Robert Fine, director of the Office of Clinical Ethics at the Baylor Health Care System. "He spent almost six months on a mechanical ventilator. Did he recover? No. Did it do him any better? No."

Daniel Callahan, international program director at the Hastings Center, a think tank in Garrison, N.Y., that is concerned with end-of-life issues, said, "A very common view among doctors is life is priceless and you can't decide whether a person is worth the money or not. But I think, increasingly, cost is going to have to be a consideration. The problem is, there is this enormous ambivalence about actually doing it."

Doctors say in surveys that cost should be considered in treatment decisions for terminal patients - except for their own patients, Callahan said. And many families want everything done for their loved ones but will question the cost when the patient is someone else's loved one, he said.

Medicare, which insures about 80 percent of Americans at the end of life, spends 28 percent of its dollars on the last year of life and 14 percent of its dollars on the last two months, Fine said. Medicare also sets the pace for what services private insurers will cover.

To some extent, Medicare and other insurers already ration care, he and others said. Some costly procedures are branded "experimental" and refused for coverage. Some health plans won't cover transplants, and most set lifetime dollar limits on how much they will pay out, ending coverage once a person hits the limit.

But using a rare case such as Emilio's to make broader decisions about end-of-life care for everyone oversimplifies the issue and is dangerous, said Dr. David Casarett, associate professor of medicine at the University of Pennsylvania and a palliative care physician and researcher.

"These decisions need to include not only cost, but medical benefit, comfort to the patient and quality of life," Casarett said.

Under Texas law, doctors and hospital ethics committees have the final say over end-of-life care and can overrule the family's wishes.

When doctors wanted to stop treating Emilio, who was born blind and deaf and was later diagnosed with a terminal illness that destroyed his central nervous system, the ethics committee at Children's Hospital initially decided to continue treating him.

But in February, the committee agreed with doctors that it was time to stop and gave Catarina Gonzales, his 23-year-old mother, 10 days to find another hospital for Emilio. The committee, and later a judge, extended the time as Gonzales fought to keep him on a respirator and looked unsuccessfully for another facility that would treat him. The hospital and doctors said the cost of Emilio's treatment was never part of the discussion.

Emilio's care was covered by Medicaid and Supplemental Security Income, and the hospital expects to collect $389,000 of what it billed because of low reimbursements under the program, said Michael Regier, general counsel for the Seton Family of Hospitals, which runs Children's Hospital.

Jerri Ward, the Austin lawyer who represented Gonzales for free, said the talk surrounding the cost of Emilio's care is "a sick discussion."

Even so, Ward said, "someday, we're going to have to talk about the elephant in the room - how we're going to fund these things. Are we going to want to be living in a city where we throw away the weakest and the most vulnerable because they don't have the political power to get the treatments they need?"

But until there are alternatives, such as trained health care mediators to help resolve differences between doctors and loved ones, people will continue going to court to stop doctors from withdrawing treatment, Casarett said.

And ultimately, Callahan and other ethicists said, people might not like what happens if policymakers step in to decide how to keep down health care costs for the terminally ill.

"The insurance carrier and the government will step in and say, 'All patients over X dollars, we're not going to pay for that anymore,' " Fine said. "They'll simply say, 'This patient's life isn't worth that much money.' "

Email address for Larry Kolvoord AMERICAN-STATESMAN maroser@statesman.com. 445-3619

'Someday, we're going to have to talk about the elephant in the room,' said Jerri Ward, left, with Catarina Gonzales after Emilio's burial.

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Nockels Case




Hospital starved our grandmother to death, family tells inquest

News Items | Olive Nockels

The Daily Telegraph (LONDON)
January 9, 2007 Tuesday
David Sapsted

A PENSIONER who, according to her family, starved to death in hospital, pleaded for food and a cup of tea in the days leading up to her death, an inquest heard yesterday.

Olive Nockels, 91, a great-grandmother, begged her family for beetroot sandwiches, macaroni cheese and a cup of tea, the inquest in Norwich was told.

But doctors and nurses from Norfolk and Norwich University Hospital insisted that no such request had been passed on to them.

Before her death in October, 2003, Mrs Nockels, a retired school matron, had become the subject of a High Court action after she went four days without food or fluids after hospital staff withdrew them against the family's will.

The family obtained a High Court injunction ordering the treatment to be reinstated but - without their knowledge, the family claim - the hospital obtained an amendment to the order the following day to have the words "so far as is medically possibly'' inserted.

Mrs Nockels, who was admitted to hospital following a stroke after a hip operation, died four days after the High Court ruling.

Ivy West, her daughter, told the inquest that on Oct 2, on the day the hospital withdrew the feeding tubes and more than a week before Mrs Nockels died, her mother made an impassioned plea from her hospital bed. "She said: 'Help, help me, help me, please'. They weren't feeding her or giving her any drink and I think she knew what was going on,'' said Mrs West.

The inquest was told that nurses had withdrawn tubes supplying nutrition and fluids to Mrs Nockels on doctors' advice after she became "waterlogged'' with fluid leaking from her limbs and trunk.

Two attempts were made to fit a naso-gastric tube as a last option but Mrs Nockels, from Holt, Norfolk, became upset and the attempts were abandoned.

Nurse Fiona Smith told the inquest: "Olive became quite distressed, groaning and crying, and tried to stop the tube placement by moving her head. She was not co-operating and it was impossible to achieve.'' Consultant Brian Payne said that he had been asked by Dr David Maisey, Mrs Nockels's doctor, for a second opinion on his patient's mental capacity 10 days before she died. James Dingemans, QC, representing the family, put it to Mr Payne: "Members of her family report that she had asked for beetroot sandwiches, cups of tea, and macaroni cheese. That would indicate that she had mental capacity.''

Mr Payne replied: "I was not aware of that and it strikes me as different to what I saw when I examined her. When I asked her whether she knew she would die without fluid or food, she made no response at all. I felt I was looking at a fragile lady with multiple disabilities and felt she was dying. I felt it reasonable to get the family to an understanding of that position and anything else would be futile and burdensome. I thought she was going to die and it wouldn't have surprised me if she had died that evening.''

In a written statement to William Armstrong, the Norwich and Central Norfolk coroner, Mrs West claimed that hospital staff were "determined'' not to treat her mother from the start.

She accused them of removing her hearing aid and false teeth, preventing her from communicating with staff, and leaving her in a cold room with the window open and only a blanket covering her.

"I was seriously concerned about the attitude towards her and their determination not to treat her,'' she said, adding that, contrary to the hospital's claims, her mother was lucid and able to talk.

We constantly complained that, without nutrition, she would just get weaker and we repeatedly asked for her to receive food. He (Dr Maisey) kept saying he would consider it in a few days. After two weeks, he said he was surprised that she was still alive.''

Chris West, Mrs Nockels's grandson, said: "They said my grandmother's quality of life would be so poor that they should not intervene and let her die. It became obvious the intention was not to treat her despite the fact she was conscious and asking for food and water. The answer was always no.''

Mrs Nockels died on Oct 10 with the cause of death given as cerebral infarction - a stroke. But Dr Michael Jarmulowicz, a consultant pathologist called as a witness by the family, told an earlier hearing: "She didn't die of cerebral infarction, but with cerebral infarction. She died as a result of lack of food and fluids, with cerebral infarction secondary to that.''

The inquest continues.


Additional Nockels' articles

October 8, 2003
New move in elderly care case
The family of a 91-year-old woman at the centre of a legal row about the rights of elderly patients in hospital want her to be examined by an independent doctor.
ttp://news.bbc.co.uk

October 10, 2003
BBC News: Olive Nockels Dies
A 91-year-old grandmother at the centre of a High Court action over the treatment of elderly patients has died.
news.bbc.co.uk

August 7, 2006
Nockels Doctor Accused in Man's Death
www.timesonline.co.uk   He died of thirst: NHS accused by widow over care...A CORONER investigating the death of a woman allegedly starved and deprived of fluids in hospital has been asked to hold an inquest into the death of a patient on the same ward.
By Michael Horsnell.

www.doctorsfed.org.uk   He died of thirst: NHS accused by widow over care...A CORONER investigating the death of a woman allegedly starved and deprived of fluids in hospital has been asked to hold an inquest into the death of a patient on the same ward.

January 11, 2007
Coroner Rules Norfolk Grandmother "Not Starved" after 16 Days on 1/4 Starvation Diet
www.lifesite.net