HOUSTON – A Beaumont family waited for the green light to transfer their matriarch to a long-term care facility Wednesday after a pro-life organization agreed to cover the costs associated with her move.
Texas Right to Life has raised thousands of dollars to help cover the costs to transfer Carolyn Jones, 61. The money raised will also cover Jones’ first weeks of care at the new facility and continued legal defense.
Jones remained at Memorial Hermann Southwest Hospital on Wednesday, awaiting a transfer. Jones suffered a stroke two years ago and has been at Memorial Hermann Southwest since last fall. Earlier this month, Jones’ family was notified of a decision to eventually take her off of ventilation, following parameters outlined in a section of Texas’ Advance Directives Act.
At issue is the so-called 10-day rule, which Jones’ family said unfairly gives doctors the right to decide whether the 61-year-old gets to live.
Doctors removed Jones from ventilation Monday. Despite that, her family confirmed to KPRC2 she was breathing Wednesday, although she was in need of dialysis treatment.
Jones and her family are at the crossroads of law and ethics: Texas' 10-day rule section of the Advance Directives Act gave them 10 days to find a new medical facility or face the removal of life-sustaining treatment, which took place Monday afternoon.
"I don't think they gave her a fair chance," said Kita Jones, Jones’ daughter.
How does 10-day-rule work?
The Jones family received word earlier this month that it had 10 days to find a new medical facility for Carolyn Jones. That’s outlined in the law.
It gives a patient or their caregiver 10 days to find a new medical facility or risk the removal of life-sustaining treatment.
Hospitals have said it's the last thing they want to do, stressing it comes after all options for treatment have been explored and deemed ineffective by a patient’s doctor.
An ethics panel at the hospital reviews the case and makes the ultimate decision on the matter.
KPRC2 spoke with an expert on law and medical ethics to gain a better understanding of how the panels work.
Dr. Michael Ewer is a visiting professor in the Health Law and Policy Institute at the University of Houston Law Center.
Ewer previously served as chairman of both the Ethics Committee and the Conflict-of-Interest Committee at the MD Anderson Cancer Center. He has written four books, as well as nearly 300 publications. He is an internationally recognized speaker and consultant in the field of medical ethics and medical-legal issues.
Ewer is not affiliated with Carolyn Jones' case.
What are medical ethics panels?
“Generally, they are made up of a number of different coalitions. Physicians take part; nurses, generally, take part; administrators can take part, clergy can take part and sometimes people not connected with the institution itself may be invited to join,” Ewer said.
Ewer added the goal of the panel is to ensure objectivity in reviewing cases. In the end, the panel’s focus is to provide balanced insight that’s in the patient’s best interest.
“We try very hard both legally and medically to not have a confrontational relationship, but these panels sometimes are called out of necessity because there simply is no other mechanism to bring to the table to try to do what is right,” Ewer said.
What’s the point?
Ewer said the panels are a result of people asking for treatment that seems to contradict what some deem as standards of medical care.
The Texas Advance Directive Act was passed in 1999.
“There was no way, really, under the laws at that time to say, 'Wait a minute, we need to stop.' The question of whether or not we’re doing what is right and to make sure that various parties are being heard,” Ewer said.
“What the legislation says is you need to get a group of people who really know what they’re talking about, who can balance those various interests, get it right and try to do the right thing,” Ewer said.
Balance is the goal.
Ewer said balance is crucial.
“The balance is a balance between what we know about the patient’s desires, what we know about the physician’s assessment of the likelihood of meaningful recovery or any recovery that might be acceptable to the patient or the family and then we have institutional and societal interests,” Ewer said.
After a panel makes its decision, that doesn’t mean the patient and/or family agrees. The law allows the chance for a family to appeal the decision before a judge, which could extend the 10-day window.
“In the passage of this act, they were very, very careful to make sure that this did not become a rubber stamp for the institution,” Ewer said.
Is a 10-day window too short?
Critics have long argued the 10-day window isn’t long enough for a patient’s family to find a new medical facility. Moreover, they’ve criticized the ethics panels, alleging they’re no more than death panels, designed to maintain the status quo: keeping a hospital in business. Long-term care, they argue, requires too large of a financial cost, leading to a decision to end life-sustaining treatment.
Ewer said he does not believe panels take into account cost. That, he said, would be unethical.
“They should reflect entirely the science, they should encounter and take into account the emotion, the feelings, the knowledge of what patients want,” he said.
Legislative push to repeal the 10-day rule
The Texas Senate passed a bill Tuesday that extends the 10-day rule to 45 days. The bill now goes to the House for a vote.
KPRC2 asked Ewer if he thought the change, if signed into law, would make a difference.
“The patients who surprise the health care teams by turning around in the period of time between 10 and 45 days would be something that I would find exceedingly interesting to follow. If none of them do, then perhaps 45 days was not the correct way. If some of them do, maybe 45 days isn’t long enough,” Ewer said.