Alisha Hauber had never heard the phrase “do not resuscitate” when she saw the hospital order on her son Lane’s crib a few days after he was delivered.
Hauber knew something was wrong with Lane as soon as he was born, but only after Cook Children’s Hospital in Fort Worth finished testing did she learn he had a chromosomal disorder doctors often call “incompatible with life.” She was told Lane wouldn’t survive a week and the decision not to attempt cardiopulmonary resuscitation was non-negotiable.
“They didn’t ask for our consent,” Hauber, a mother of four, said of the “do not resuscitate” or DNR order. “They did it without our permission even when we asked them to take it off. They said it was the physician’s right and the hospital’s right.”
Eight years later, with Lane profoundly disabled but alive, Hauber still bristles at the unilateral right, medicine’s little-known secret. An order placed without patient consent may seem like a violation of one of medicine’s most cherished principles, but experts say cases like Hauber’s, though infrequent, aren’t isolated. Even the medical field seems unsure what to make of such power, divided about when to invoke it.
A survey published in the July issue of the journal Chest found half of responding doctors endorsed unilateral DNR orders as appropriate. Six percent of doctors and 20 percent of pulmonary critical-care doctors who responded said they had performed a unilateral DNR — that is, slipped an order in a patient’s file or refused a request to provide CPR — in the previous year.
Beginning next April, the right of Texas hospitals and doctors to write unilateral DNRs will be dramatically curtailed under a law signed by Gov. Greg Abbott last month. The law requires doctors and hospitals to notify and get consent from patients or their guardians before implementing a DNR order.
The likely impact of the law is unclear, given that most hospitals already have policies calling for doctors to get such approval before writing a DNR. More than one critic called it “a solution in search of a problem,” and bioethicist Thaddeus Pope said its value may be “more symbolic than practical.”
“This law probably won’t affect that many people, but it’s another example of discretion being taken from clinicians and hospitals,” said Pope, director of the Health Law Institute at Mitchell Hamline School of Law in St. Paul, Minn. “That’s been a national trend the last five or so years, the health-care profession losing power they used to have, the emergence of a greater culture of patient rights.”
Texas Right-to-Life testified at a legislative hearing that eight states have enacted laws requiring health-care practitioners get patient consent before writing a DNR, though not all are recent and most are limited in scope. Pope cited laws passed recently in Kansas, Oklahoma, New York and Idaho as examples of the curtailment of medical authority.
The Kansas statute, known as Simon’s law for a child whose death followed a doctor’s unilaterally-issued DNR, preceded the Texas law by a few months but requires consent only in pediatric cases. The child for whom the Kansas law is named had the same chromosomal disorder as Lane Hauber.
Ethicists said it is unclear how the new Texas law squares with the state’s 1999 futile-care law, which gives hospitals the authority to remove a patient’s life-sustaining care against loved ones’ wishes if the doctor deems continued treatment unethical because it would cause suffering. The constitutionality of the futile-care law is being challenged in a lawsuit scheduled to be heard in a Houston courtroom this week.
Texas Attorney General Ken Paxton has filed a brief in support of the plaintiff, the family of a now-deceased cancer patient for whom Houston Methodist Hospital initially invoked the law.
The DNR law, one of Abbott’s special-session right-to-life priorities, passed easily, with bipartisan support, despite opposition by the Texas Hospital Association. The Texas Medical Association opposed early drafts but took a neutral position after changes were made in the final version to provide doctors better protection from lawsuits.
The bill was sponsored by Sen. Charles Perry, R-Lubbock, who said it “defies all logic” that doctors could slip a DNR order into a patients’ files without their knowledge.
“It’s not so much that it happens often — I’m glad it doesn’t — as that it happens at all,” said Perry, a CPA. “My heart goes out to people it’s happened to.”
Several such people, including Hauber, told their stories at legislative hearings. Hauber said she was unable to get treatment for Lane even as he got older and stronger because of the DNR order and the medical community’s attitude about his disorder, known as trisomy 18, in which only about a half of those who carry the extra chromosome are born alive and only about 10 percent live to their first birthday.
Hauber told legislators that “I don’t think it’s fair, I don’t think it’s right” that a hospital or doctor has “complete control over the rest of your life and can make decisions for you.”
Cook Children’s Hospital declined comment about the case, citing patient confidentiality laws.
Pope and William Winslade, a University of Texas Medical Branch at Galveston ethicist, side with parents of such children, arguing that a hospital’s issuance of DNRs and accompanying non-treatment policies in trisomy 18 cases represent not medical judgments so much as value judgments, the view that it’s better to be dead than live with such a condition.
Greater consensus between doctors and ethicists prevails when the patient is elderly, incapacitated and near death and a loved one still wants CPR attempted. In many such situations, say experts, most doctors would favor a DNR order, noting that CPR is one of medicine’s most brutal procedures.
“CPR is a physical insult to the individual,” said Dr. Arlo Weltge, an emergency medicine doctor at the University of Texas at Houston McGovern Medical School and a Texas Medical Association board member. “Those chest compressions can break ribs. Electricity applied to the chest is painful. Intubation is miserable. And CPR is not necessarily a lifesaving event.”
FAMILIES CAN OVERRIDE
Weltge noted DNRs are rare in emergency departments because patients typically are there with acute problems, such as trauma, where CPR is one of the foundations of treatment. They occur more often in hospital rooms where an aging patient has advanced cancer or dementia, often in addition to other degenerative conditions.
Ideally, such patients have made their wishes known to doctors, but the reality is many have not — only about a third of U.S. adults have advance directives for end-of-life care. If they become incapacitated, DNR decisions typically fall to a family member.
Some interpret language in the Texas law as giving too much power to family members or other surrogates.
“It’s really an anti-DNR bill,” said Courtenay Bruce, a professor in the Center for Medical Ethics and Health Policy at Baylor College of Medicine. “It makes it hard for patients to institute DNR orders — requiring paperwork or witnesses — but easy to revoke. It allows families to override the wishes of an incapacitated patient, which is wrong. You want to honor patient preferences, not families who may be ill informed or have vested interests.”
That families have such authority was the primary issue cited by the Texas Hospital Association. In a statement, it said the law will “undermine patients’ choices and add unnecessary confusion and ambiguity.”
Still, the law does allow doctors the discretion to order DNRs in certain circumstances, where it is “medically appropriate” and death is imminent. In cases in which death is not imminent, Bruce said hospitals could invoke the process spelled out in the futile-care law, which involves approval by an institutional ethics committee and a 10-day clock to allow the family time to find a hospital that would follow their wishes.
Pope, who praised the requirement that hospitals be more transparent about DNRs, suggested the law may be a mixed bag.
“I don’t think it’s a terrible statute,” he said. “I’m confident it’ll produce some good and some bad — probably some families who want to care for a trisomy 18 child will find less resistance and probably some people for whom a DNR order is highly appropriate will have to undergo CPR. I don’t know how to weigh that.”