Who should decide when care is futile?

By Arthur Caplan

Ruben Betancourt died on May 29, 2009. Last week, a New Jersey appellate court declined to rule on the heated dispute that had broken out between his family and a North Jersey hospital over stopping his medical care prior to his death.

It's not often that the nonruling of a court holds national significance. But the state Appellate Division's punt in this case merits our attention.

Betancourt, 73, had undergone surgery at Trinitas Regional Medical Center in Elizabeth to remove a tumor from his thymus gland. The surgery went well, but during his postoperative recovery, Betancourt's breathing tube somehow became disconnected, and he suffered severe, irreversible brain damage.

As a result, Betancourt wound up needing a ventilator, kidney dialysis, and a feeding tube. He soon developed terrible skin ulcers and infections.

The doctors at Trinitas believed it was pointless to continue treating Betancourt. His brain was permanently and severely damaged, his kidneys would never work again, and his skin would only continue to fall apart.

Betancourt's daughter and the rest of his family did not agree. They wanted all treatment to continue.

The hospital unilaterally imposed a do-not-resuscitate order, meaning the staff would not try to revive Betancourt if his heart stopped. The family went to court and persuaded a judge to have the order rescinded. Then the hospital went to court to have it restored.

In the midst of all this fighting, Ruben Betancourt died.

Should doctors ever be able to decide that medical care is futile and stop treatment regardless of the wishes of a patient's family, friends, or guardians? It's a huge question, and it will only become more pressing in the years to come, as more and more patients' lives are prolonged with expensive medical technology.

Today these cases are almost always worked out quietly, without lawsuits. In my experience, the hospital usually backs down, and care goes on.

But that may not be the right answer in every case. And doctors, who often feel frustrated by situations they deem futile, don't press to end care for a variety of reasons, including the risk of adverse publicity and the money to be made providing more care.

In its 26-page opinion, the New Jersey court said it would not rule on the Betancourt case because the facts were in dispute, a malpractice charge might be brought against the hospital, and the hospital and family are fighting over Betancourt's bills. The court held that the contentious nature of the case did not make it useful for resolving broader issues of public policy concerning medical futility and decisions to stop care against families' wishes.

The court did, nevertheless, understand the importance of the matter, saying: "The issues presented are profound and universal in application. They warrant thoughtful study and debate not in the context of overheated rhetoric in the battlefield of active litigation, such as marked the [Terri] Schiavo debate, but in thoughtful consideration by the Legislature as well as executive agencies and commissions charged with developing the policies that impact on the lives of all."

State legislatures, bioethics commissions, religious groups, think tanks, and the federal government would do well to heed those words.

Although few cases involving medical futility reach court, that doesn't mean doctors don't grapple with them regularly in hospitals and intensive care units. Although nearly every such case is resolved in favor of continuing care, that doesn't mean this is the best use of medical resources or public money. And although this nation is likely to encounter more cases like Ruben Betancourt's, that doesn't mean we should resolve them all in the courts.

What these facts do mean is that it's time to openly and publicly examine what should happen when medical professionals feel they can do no more for patients, but their families, partners, and friends vehemently disagree.