WHEN TINSLEE LEWIS When she was ten months old, the doctors said the treatment that kept her alive was causing her pain and had to stop. Born with serious heart and lung problems that the surgery couldn’t alleviate, she had no chance of getting better, they said. His family disagreed. Almost two years and several judgments later, Tinslee remains on life support in a hospital in Texas. In April, the hospital, demanding that a final court decision, expected in January, be brought forward, described how the child’s body had been “ravaged” by invasive treatments. Her mother replied that the two-year-old girl, who is heavily sedated but conscious, has shown signs of improvement.
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This battle goes beyond the suffering of a child, her family and those who care for her. Texas Right to Life, a pro-life group that funds the Lewis legal fight, hopes this will result in the overturning of a state law designed to protect the right of doctors to refuse what is known as “futile.” Or “not beneficial” to worry about. The law allows doctors to see if another hospital will accept the patient and, if that is not successful, to stop treatment after ten days.
Yet the questions this case raises, about how the clashes between doctors who wish to interrupt care and the families of patients who wish to continue it should be resolved, are familiar to doctors in hospitals across America. Many say that such conflicts occur more often.
Robert Truog, a pediatric intensive care physician at Children’s Hospital in Boston and director of the Bioethics Center at Harvard Medical School, says advances in medical technology mean that it is “very difficult to die in a ICU [intensive-care unit] these days. “This can make it harder for families to accept that there is no chance that a fatally ill patient will recover. Their hopes, he says, are often bolstered by experimental treatments discovered online Ten years ago, one or two patients a year were kept alive against the advice of doctors at Dr Truog’s hospital. ICU; now there are two or three at any given time. “Families are more and more likely to go to court. Doctors don’t want to be ubiquitous on social media, so they increasingly choose the path of least resistance. “
Such conflicts affect patients of all ages. In recent years, a rapid increase in the use of extracorporeal membrane oxygenation devices, which keep patients alive when their heart or lungs (or both) are not working, has resulted in loved ones being more likely to require further treatment.
The combination of powerful life support systems with religious belief – or the simple power of grieving – can create big problems for hospitals. Thaddeus Pope, a bioethicist and professor at the Mitchell Hamline School of Law in Minnesota, said the influence of vitalism, which maintains that life must be preserved at all costs, has resulted in a growing number of patients dying cerebral cells are kept in hospital. And “doctors absolutely don’t want dead patients in their hospitals,” he says.
Such cases can cause enormous distress to medical staff, especially nurses who treat patients on an hourly basis. Even washing and feeding someone who cannot feel anything can cause anguish to a person who is trained to heal. Caring for conscious patients in a way that causes suffering but without any benefit can put them under intolerable strain. The most recent court record from the hospital where Tinslee Lewis spent her life describes how nurses who change her diaper first apologize, “in the hope that she will understand that the torture she is undergoing is not their choice “.
Providing futile medical care can create other problems. This can delay the admission of other patients to intensive care units. Although the hospital says its staff don’t consider the financial cost of keeping Tinslee alive, her care, paid for by Medicaid, has cost more than $ 24 million, according to the hospital’s latest court records.
In any healthcare system that prioritizes the expertise of physicians and the wishes of patients’ families, end-of-life conflicts are inevitable. Developing policies that make them less likely can be more difficult in a decentralized health system. Texas is one of three states, along with California and Virginia, that have legislation giving doctors more power to withdraw care without consent. Others have passed laws that prohibit this.
What all disputes have in common is that once doctors determine that further treatment is unnecessary, deciding what to do next is as much a moral judgment as it is a medical one. “The life she has might not be the life we would want for our children, but we can’t make that decision,” says John Seago, legislative director of Texas Right to Life. “The hospital makes a moral decision. She is alive, which means that the care is not in vain. He says Texas law gives hospitals too much power.
Wish and hope
Other pro-life groups disagree, saying prolonging the dying process is against their beliefs. Such organizations participated in the development of the Texas law in 1999, in the belief that it would bring a swift resolution to atrocious conflicts. The row has revealed an unusual divide between pro-life groups, which tend to present a united front on abortion. Kyleen Wright, president of Texans for Life, said anti-abortion advocacy has allowed them to bond with progressive lawmakers that would otherwise be unthinkable.
The battle on Tinslee may deter other states from introducing such legislation. However, other improvements to the system are possible. Many criticize the role played by hospital ethics committees in weighing up such conflicts. Since their members tend to be employed by hospitals, some fear that they will do what they want. Independent panels, appointed by states, could further reassure grieving relatives.
In the case of adults, advanced guidelines can help. Patients tend to be less enthusiastic about life support interventions than families or caregivers. “People don’t want the guilt that might follow the decision to stop treatment,” Pope said.
Sometimes the best solutions are the simplest. Arif Kamal, a palliative care expert at Duke University, says involving people trained to talk about death “beyond the clinical details” can help reconcile families with what doctors tell them. Once a disagreement arises, it unfortunately becomes much less likely.■
This article appeared in the United States section of the print edition under the title “Signs of vitalism”