Periodically, a case involving a patient being removed from life support or being denied some potentially life-saving treatment against the will of their family captures the moral imagination of the American public.
Responses to these events tend to fall neatly along well-established cultural divides. Conservatives side with the families. Liberals side with the hospital wanting to free up space for patients more likely to produce an enforceable income stream. This isn’t much different than the cultural fight over abortion. One side thinks seriously about what it means to take a life. The other finds arguments about convenience more persuasive. If you have ever perused comments about these cases on social media, it’s somewhat stunning how common “the family needs to move on already” is among politically minded observers.
The case du jour is that of 11-month Tinslee Lewis in Texas. Texas Fourth District Court of Appeals Chief Justice Sandee B. Marion ruled this past week that the hospital can remove the child from life support:
Lawyers for the hospital argued Tinslee will never get better and keeping her on life support is causing her needless suffering.
The hospital has reached out to at least 19 other facilities to potentially transfer Tinslee, but said each facility agreed with Cook Children’s diagnosis.
However, Tinslee’s family believes she needs more time to get better, and they think she will.
Nixon argued that the hospital does not have the right to decide whether Tinslee lives or dies.
“It is the mother’s right to make that decision,” he said.
Nixon said also that the judge’s decision deprives the family of its ability to direct Tinslee’s medical care. The only crime Tinslee committed was being born sick, Nixon said.
“Criminals on death row have more rights,” he said.
That “criminals on death row have more rights” than families with a loved one in critical condition is a solid observation. In our justice system, serial killers and child rapists can fight to prolong their lives – with a cumulative expense of tens of millions of taxpayer dollars in lawyers’ fees and prison expenses – for decades. Folks on death row are more likely to die of natural causes or prison violence than to be executed by the state.
In Texas, however, hospitalized individuals on life support get 10 days. And Tinslee Lewis is not the first child that Cook Children’s Hospital in Fort Worth has used the law against to cease providing services:
The case of 11-month-old Tinslee Lewis is once again shining a national spotlight on Texas’s 10-day rule.
Gov. Greg Abbott and Attorney General Ken Paxton, whose job is to defend Texas law, have come out against it. In an email, Paxton even called the law “unconstitutional” and “barbaric.”
So what exactly is this rule?
It’s part of the Texas Advance Directive Act that was passed by the Legislature and signed into law back in 1999. A portion of that law states:
“If the patient is requesting life-sustaining treatment that the attending physician and the review process have decided is inappropriate treatment, the patient shall be given available life-sustaining treatment pending transfer … The physician and the health care facility are not obligated to provide life-sustaining treatment after the 10th day after the written decision.”
In other words – when doctors and patients reach an impasse and the hospital gets its board’s approval to invoke the rule, patients or their families have 10 days to find a facility that will accept them. If they can’t, the hospital can stop giving life-sustaining treatment on day 11.
The law is pretty rare. The only other states with something similar are California and Virginia. The other 47 states don’t put time limits on transfers.
The law has been controversial in Texas. Baby Tinslee’s case isn’t the first to get national attention. The law also came into question in 2018 in the case of a 9-year-old girl diagnosed with cancer, who was also being treated at Cook Children’s Medical Center in Fort Worth.
I have no way of knowing the particulars of the Lewis family’s situation, but I can relate to the general problem of a hospital wanting to cease providing care for a loved one and the difficulty of transferring a patient in critical condition.
As I have mentioned in earlier posts, my father developed an aneurysm in his aorta that ruptured several years ago. He survived emergency surgery only to be in a coma for weeks.
You learn a lot about how little doctors understand about how the brain functions when you have a loved one in this predicament. Most of what doctors will tell you is based on statistics they collect. “If a patient does not regain consciousness within 72 hours following surgery, they are unlikely to ever recover,” they would explain.
Of course this statistic is skewed by the fact that the doctors spend every day after those 72 hours trying to persuade family members to take their loved ones off of life support. It’s a morally perverse self-fulfilling prophecy.
In reality, doctors have very little technology to inform their decisions about what is happening in the brain. They show you endless brain scans, which provide some information about activity in the brain, but which cannot tell you anything about the quality of that activity. The nature of consciousness is an absolute mystery to the medical profession, but specialists don’t want to tell you that. All they have to offer are statistics, which are rather useful in talking to people who cannot think critically themselves.
In our case, we were assured and reassured that my father was a “vegetable.” Doctors would cruelly explain that to us standing next to his bed.
When their attempts to “reason” with us failed, they sent in the hospital’s non-denominational religious counselor to try to convince us we were making the wrong decision prolonging his care.
“You seem like good people. Do you really think your father would want you to do this?” he’d say, decked out in his fake priest garb with a fake compassionate smile. “Don’t you think your father would want you to let him go and find peace?”
Actually, no. My father is a badass son of a bitch Vietnam vet. He’d want us to fight for him.
And he’d sigh and shake his head, as if he had the unfortunate position of bearing inside information and dealing with people who were fundamentally outsiders.
As the days carried on, members of my family were convinced my father was starting to show signs of consciousness. We brought in friends to confirm this, including a family friend who is a cop. It was impossible to get the doctors to acknowledge this. We were sitting with my father all day and all night, and they’d stop in for five minutes in the morning to shine a flashlight at his eyes and remind us that he was a vegetable and we should cut off his life support. They refused to listen to anything we were saying. Their behavior even visibly disturbed many of his nurses.
We started to wonder if the decision that my father’s life was not worth saving was already having an impact on the level of care he was receiving. Did they see carrying out all the routine procedures he needed to survive as a chore? We evaluated the possibility of transferring him, but were advised no other hospital would want to babysit his living corpse.
The presiding physicians and hospital officials then started the process of building a legal case against us to remove him from life support against our directives. Each time the doctor came in to evaluate him, he’d have another physician and hospital official shadowing him to rubber-stamp his assessments. They explained to us that this is what they were doing.
Then one day, my father just woke up. Whatever microscopic damage that had been done by the catastrophic event had healed and he was suddenly fully conscious and talking. He was exactly like himself, though he did struggle with walking. As we had had the television in the room on all day, tuned to the news, he commented about all the events that were happening in the world, which this was the earthquake in Japan that damaged their nuclear power plants. It was insane.
The worst detail of this whole ordeal is that my father heard and understood every time the doctor tried to convince us to remove him from life support. He did not want to die, but had no physical means of communicating that.
While his nurses were celebratory, the doctors’ attitude quickly turned cold and curt. They were clearly afraid of a lawsuit or being reported to licensing boards. They could not get him moved to a floor fast enough.
The core debate in all of these cases is not about care. It’s about money. It’s about the business of running a hospital. There is a whole industry in the US of caring for individuals that are hopelessly bedridden, but hospitals want their prime real estate for patients they can gang-bang with fees for tests and scans and 50 specialists stepping in. Hospitals in the US have evolved financially predatory business models, and it is informing every aspect of their existence now, including their advice on who lives and dies. And in many states, the law props them up in that respect.
When your loved one is in an emergency – whether that is an organ failure, a horrific traffic accident, a terrorist attack – you usually do not have the opportunity to decide what hospital they are sent to. Once they are hospitalized, you don’t have a lot of options to move them to a new hospital if you don’t like the level of care they are receiving or have conflicts with the people providing the care.
My advice to anyone reading these stories in the news is not to shrug them off as yet another installment in the culture wars, but sources of valuable intelligence on the nature of local health care providers that you may need one day.
I should add that this is not only a conflict between patients and hospitals. I have heard surgeons gripe about how they pull off miracles in the operating room saving trauma patients, only to have their “recovery” kill them.