News outlets all over the world have told the sad story of Charlie Gard. Charlie was born in September 2017 with a rare medical disorder called mitochondrial DNA depletion syndrome. As a result of this disorder, Charlie is blind, deaf, and in need of life support for breathing.
Charlie’s parents want to transfer him from a hospital in London to the United States, where a long-shot experimental treatment is available. Charlie was even the subject of a sympathetic Tweet by President Donald Trump: “If we can help little #Charlie Gard . . . we would be delighted to do so.”
This seems like a straightforward situation, in which the doctors and hospitals think the experimental treatment is futile, but the decision should be up to the parents, right? Not so fast.
In Great Britain, the Children Act of 1989 enables courts to override the decisions of parents with respect to their children’s health care, mandating that “the child’s welfare shall be the court’s paramount consideration.” Applying this law, British courts have ruled that Charlie should get no further treatment and have ordered his life support withdrawn.
You might think that this type law is only a risk on the other side of the Atlantic, but the example of Texas law shows otherwise.
Texas death panels
When it comes to protecting patient and family rights in health care treatment decisions, Texas ranks dead last. The reason is a law that went on the books a decade after the British Children Act. It is Texas Health & Safety Code Chapter 166, commonly called the Advance Directives Act.
Most people who supported the law when it was passed in 1999 did so because they felt that it gave health care providers, patients, and families a clear procedure for handling end-of life-care requests and directives. In reality, though, it gives doctors and hospitals nearly unchecked powers to override the wishes of patients and their families.
The draconian provisions of the Advance Directives Act are triggered when an attending physician refuses to honor a patient’s advance directive or a treatment decision made by or on behalf of a patient. Once this happens, the patient’s case is referred to the hospital’s ethics committee.
As a medical malpractice lawyer, I have represented and advised many patients and families at hospital ethics committee/medical futility meetings at Houston hospitals in the Memorial Hermann and Kindred systems, as well as Kingwood Medical Center.
While the law does not allow the attending doctor to serve on the ethic committee, it might as well. An ethics committee mainly comprises the doctor’s colleagues on the medical or nursing staff of the hospital.
The hospital has to give 48 hours’ notice of the ethics committee meeting that will decide the patient’s fate. The patient or a designated health care agent may attend the meeting, but the law provides no right to legal counsel.
Ethics committee proceedings are semi-formal affairs that are intimidating to patients and their families. Things get underway with the attending doctor, and nursing and case management staff involved with the patient’s care, presenting their opinions about the patient’s condition. Using medical terms, they explain how all hope is lost and that providing further care would be medically futile.
At that point, the patient or representative is given an opportunity for a rebuttal. Then the committee adjourns and votes.
If the ethics committee agrees with the attending physician, then it issues a written decision. The patient and family members then have 10 days to arrange transfer to another facility, at their expense, or the hospital and doctors can terminate all curative treatment, as well as food and water.
The law provides an opportunity for judicial review of a hospital ethics committee decision. The patient can file a lawsuit in an appropriate Texas court to seek an extension of the 10-day transfer period. To be entitled to an extension, though, the patient must prove that, more likely than not, there is a reasonable expectation that a doctor or facility would honor the patient’s advance directive or treatment decision if there was additional time available.
I have taken Memorial Hermann to court to get more time following an adverse ethics committee decision.
Absent a court order, the clock stops ticking at the end of 10 days, as does food, water, and treatment. There is nothing that the family can do but wait for the patient to die. The hospital, doctors, and members of the ethic committee are totally immune from civil suit, criminal charges, or licensure review, so long as they follow the procedures in the Advance Directives Act.
The law empowers hospital committees to make life and death decisions that conflict with patient and family wishes, with no oversight, reporting, or review.
If that isn’t a death panel, I don’t know what one would look like.
We are here to help
If you find yourself being bullied by hospital administrators, doctors, or nursing staff, or facing a hospital ethics committee, then call Painter Law Firm, in Houston, Texas, at 281-580-8800, for a free consultation. We are experienced in advising and representing patients and families dealing with these issues and may be able to help you. As part of our review, we can also let you know there may be a medical malpractice issue motivating the whole situation—it would not be the first time that I have seen a hospital try to use an ethics committee to save money and cover up their negligence.
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Attorney Robert Painter is a medical malpractice attorney at Painter Law Firm PLLC, in Houston, Texas. He focuses his law practice on representing plaintiffs in medical negligence cases. As a health lawyer, Robert Painter also advises patients and families dealing with medical ethics committees convened under the draconian Texas Advance Directives Act.
