Make Your Wishes Known

The story of a 36-year-old man on life support whose family pulled the plug, and what happened next
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Dr. Kenneth Prager, a 70-year-old medical ethicist, was sitting in his office at the New York Presbyterian Hospital waiting for a patient when he got a call from a colleague. He was happy to hear from Dr. Steve Williams, 56, who had trained under him and was now the chief medical officer of a nearby hospital. But he grew uneasy when he began to understand the reason for the call.

Most of the time, ethicists handle cases where a family refuses to let a family member go. This was just the opposite. Williams was caring for a 36-year-old patient who was unconscious, and on several forms of life support, but was expected to recover. The patient's family, though, believed it was best to pull the plug.

Because of immense technological advances in medicine, it can be hard for doctors to determine at what point the treatment is futile.

Joseph Brown, a tall, wiry man, was lying unconscious on the bed in the ICU, oblivious to everything going on around him -- including his father, sister and girlfriend, who agreed that his life support should be withdrawn. Every time the hospital would try to wake him up, Brown would be agitated and needed sedation. He needed an amputation -- actually several. His working class family decided, unilaterally, that he wouldn't want to live that way. They claimed that because he worked with his hands, as a bricklayer, if he lost them his life would be worthless.

Prager, director of Clinical Ethics and Chair of the Medical Ethics Committee, was uncomfortable with their decision. He has been involved with the medical ethics committee at the New York Presbyterian hospital since its inception in 1992 and is called for ethics consultations around 150 to 200 times per year. Brown's case was one of the few unusually complex cases he encountered.

"If there is any doubt about what the patient would want, it would seem appropriate to err on the side of life. Wrongful death is a greater injustice than wrongful life," said Prager.

Williams and his colleague Julia Stern, vice president of the legal affairs at the hospital, and also part of the ethics committee, generally resolved most ethical dilemmas without involving any third party. But because it was an unusual case, he wanted a second opinion; just to make sure he was on the right path. Because of immense technological advances in medicine, it can be hard for doctors to determine at what point the treatment is futile.

If the patient, family, and the doctors involved are not on the same page regarding the treatment of the patient, the doctors consult the ethicists who try to achieve a consensus and recommend what seems to be the best interest of the patient.

The job becomes much more challenging when the family demands something that seems to compromise the welfare of the patient, even though that is what they feel reflects the patient's wishes.

Brown was a single white male who lived with his family. In November of 2005, his toe got infected. He ignored it for sometime, thinking it was something he could treat at home with some antibiotics or ointment. But the skin in and around his toe kept hardening and getting redder, and he eventually had to go to a hospital. Even then, Brown thought he just needed a surgeon to drain the infection from his toe and that that would be an end of the problem. Unfortunately, that wasn't the case.

By the time he came to the hospital, the infection had entered his blood stream and spread in his entire body. Brown had developed necrotizing fasciitis -- the "flesh-eating" disease that kills 73 percent of the patients diagnosed with it.

The disease can start with something as simple as a paper cut or a pimple. It is caused by bacteria that enter the body through a break in the skin and then spread along the fascia underneath -- which is the division between the muscle and fat. 

Brown soon developed sepsis and multi-organ failure, and had to be sedated and put on a breathing machine, with a tube in his windpipe.

Before meeting the family, Williams had assumed that the family did not know Brown's current clinical status. "I wanted to make sure they understood his condition was survivable ... that there were prosthetics, rehab centers, that there was a quality of life that could be attained even after the amputation," said Williams.

Williams and his colleague Julia Stern met the family in a small conference room, almost ten yards from the ICU on the second floor of the hospital. They sat toward the end of the table and Brown's father John, his sister and girlfriend sat across the table facing the pair.

John, a muscular man in his late 60s, had the coarse face of someone who worked hard to make ends meet. He kept insisting that Brown would prefer to die. A manual laborer would feel worthless after amputations.

"I told them this is not typically the situation in which you remove life support. Normally if you have someone young, you really want to do everything possible to save him, unless there is no hope," said Williams.

The family kept shaking their heads in disagreement.

Williams and Stern tried to break down Brown's medical situation. "The family was ... a bread and butter working class family. I guess they did not have college education. They were nice people, but things had to be explained to them in basic terms," said Williams.

"I told them everything that is wrong with him now is reversible and at this point there were early signs that he was headed in the right direction."

But, the family seemed unconvinced. They kept on asking questions like what will Brown do without the limbs? What would his future be like?

"They were adamant, not angrily so," said Williams, who was still finding it hard to believe that the family wanted to let Brown go. Brown's family was not angry or overly emotional. They were unequivocal about what they wanted. They wanted him to have the breathing machine stopped. They were sure Brown wanted it.

Brown had left no advanced directive -- no written account of his wishes for medical care in near-death situations. Nobody had ever heard Brown talk about anything concerning end-of-life situations. Their certainty about his wishes amounted to speculation, however confident. 

In the absence of an advanced directive, the ethical and legal protocol is to implement a person's presumed wishes through what is known as substituted judgment. A healthcare proxy takes decisions for a patient but if the patient has not appointed a surrogate, family makes the decision based on what they think the patient would have wanted for himself if he had the capacity to do so. Brown's family presumed - in fact were sure that he would prefer death to life with disability.

Occasionally, families tell Williams that he is not God; that he doesn't get to decide who lives for how long. Williams smiles, rubbing his hands through his salt and pepper beard. "I tell them God is making his desire clearly known. We are fighting God at every step of the way with the ventilator, the IV medications, the pacemaker. I am in a tug of war with God. God is trying to pull your loved one up to heaven and I am trying to keep him here on earth. I have been in this tug of war many times, and I have never won."

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Ashwaq Masoodi is a Fulbright scholar from Kashmir. Her work has also appeared on The New York Times City Room and in Guernica magazine and newspapers in India. 

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