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going on around him -- including his father, sister and girlfriend, who agreed that his life support should be withdrawn.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."

After the meeting, Williams knew he wanted a varied range of opinions and to buy some time. "We could have gone to the ICU and asked that the life support be removed but it wasn't that simple. There was uncertainty in the case," said Williams.

In the 1970s, as his involvement with patients in the ICU increased, Prager began thinking about how doctors treating terminally ill patients were not prolonging their lives, but instead prolonging the dying process.

He and Stern decided to approach the hospital bioethics committee. The committee had 15 members including doctors, a priest, lawyer, and a social worker. It was rare for the full committee to be called together to hear an urgent case. But this time, they did.

***

When the first ethics committee at his hospital was established, Prager was working as a pulmonologist. Most of the people involved worked as volunteers. Even today, most of the members of the ethics committee are volunteers. Most have on-the-job training, serving on hospital ethics panels. But the new generation of ethicists now is obtaining degrees in bioethics. In fact, currently almost 81 universities and academic centers in the US offer masters in bioethics, American Society of Bioethics and Humanities lists.

In 1960s, when Prager was a general internist at the Columbia Medical Center, the bioethics movement started in the medical research field after the need was felt to ask research subjects for their consent before intervening on their bodies, triggered by an exposé of the abuse of human subjects during research procedures.

In the 1970s, as his involvement with patients in the ICU increased, Prager, who was by then an attending physician, began thinking about how doctors treating terminally ill patients were not prolonging their lives but instead prolonging the dying process. This was the time when the first centers for studies of bioethics were formed. The major centers for studies of bioethics were the Hastings Center and the Kennedy Institute of Ethics.

The mention of the term "hospital ethics committee" first came up in the Karen Quinlan decision in 1976. It was not until 1980 when 7,000 hospitals implemented ethics committees.

Soon, questions were raised about medical authority in dealing with life and death situations in hospitals and nursing homes -- questions that have beset Prager's mind now for a long time. The movement spread to hospitals. A need was felt to inform the patients before anything was done on him and also to seek an informed consent from them.

In early 1990s, Prager joined the Columbia Medical Center cardiac arrest committee, which was the precursor of the ethics committee there.

In 1992, the Joint Commission, a non-profit organization that accredits healthcare organizations made it mandatory for hospitals to have some mechanism to deal with ethical concerns. The commission did not define exactly what the mechanism would be.

There is no national licensure process for clinical ethicists. In fact there is no universal standard for ethics consultation or credentialing of consultants. But there is a movement under weigh to standardize both. The American Society for Bioethics and Humanities has established standards for health care ethics consultations.

In 1998, the Society issued the 'Core Competencies for Health Care Ethics Consultation' report on skills ethicists should have and standards that should be followed for ethical consultation. A revision of the report was issued in 2011. The idea is to try to limit as much variations as possible in the way ethical consultations are done.

"It is a huge responsibility. There is a tremendous need for young doctors to get guidance as to how to deal with these cases. As the technology advances, treatments are made sophisticated. This increases the dilemmas and makes decisions difficult," said Prager.

***

Just before the full ethics committee meeting on Brown's case was held, Williams called Prager as he thought he was the "obvious person to go to" for this case.

"We had had previous discussions about ethical cases. I knew it was an interest of his," said Williams.

Williams told Prager he wanted to "bounce off" an unusual case of him. Sitting in front of his desk covered with stacks of papers on previous and ongoing cases classified by date, Prager was surprised to receive the unexpected call. He excitedly said, "Go."

Prager thought even though it was an accepted practice to rely on families for making decisions of an incapacitated patient's care, he did not think it was right to let Brown die. He told Williams that as long as Brown's brain was not severely damaged, he could live.

He said had he been on the ethics committee, he would have stressed that this was an unprecedented type of case and no one knew of Brown's wishes. "He (Brown) could have never have envisaged this. I don't know how the relatives could possibly know what he would have wanted," said Prager with the wrinkles around his mouth and nose, popping up while speaking.

Prager was reminded of a New England Journal of Medicine article he read a couple of weeks back on disfiguring operations done on American soldiers in Iraq to save their lives. It talked about how 203 U.S. soldiers had undergone major amputations before the battle for Fallujah, and how there was an increase in such surgical operations.

"In the US army, people weren't saying let's let them (soldiers) die because who would want to live with half their limbs gone. Instead they said let's give them all the help they need to live," said Prager.

A day after he met the family, Williams remembers thinking if the hospital could just push things back a little further, to may be give Brown a chance to recover. He was sure Brown would survive.

While the committee meeting was being held, Brown's condition started to improve. Due to the medicines, his white blood cells count that had increased came down to normal. The toxin levels started to fall. His kidney functioning improved. He was doing more and more breathing on his own and relied less on the ventilator. "We had evidence on all fronts that he was recovering," said Williams.

A substantial group, including Williams and other doctors caring for Brown, had gathered in the upscale boardroom in the administrative building of the hospital. Everyone sat at a large round table. The orthopedic surgeon in the case recommended amputations but also warned about the subsequent disability that would follow. The ethics committee members said that even though it is a norm to rely on families for making such decisions, "a decision to forego 30 to 40 years of potential life was weighty." 

Ultimately, though, the committee was convinced that the family was acting in good faith.

The family was given two options: either continue the current level of care and attempt within 10 days readdress the question with the patient or else discontinue mechanical ventilation immediately.

As he was constantly monitoring Brown's condition, Williams told the committee that there was a high likelihood that Brown would survive even without the ventilator.

But even after an extensive discussion, Brown's family said the life support should be discontinued. They feared that if the process were delayed, Brown would have a life of unwanted disability.

The hospital asked the family if someone wanted to come and meet Brown one last time. Hospitals orchestrate the withdrawal of life support so that families can visit, say their final goodbyes. All the unnecessary equipment around Brown was removed. All the beeping alarms, the respirator and blinking monitors were discontinued. Bedside space was created for the family in case they wanted to be around Brown in what could possibly be his last moments.

The doctors turned off the breathing machine and took the tube out of his windpipe. Brown showed no respiratory distress, though. He began breathing on his own; calmly, comfortably.

After being sedated for 15 days, Brown began regaining consciousness. Brown's sister tried speaking with him. She told him about the decision that the family had taken. She explained that the doctors had suggested amputation of his hands and legs.

To her surprise, Brown said, "Do whatever it takes."

There was some concern among doctors about how the family would react to Brown's decision. To their surprise, the family accepted it calmly. "There wasn't any rancor. It wasn't as dramatic as [I] expected," said Williams.

And within less than a month and amputations of his four limbs, Brown was discharged from the hospital.

***

Several weeks later, Brown was sitting on a wheelchair in the hospital waiting room wearing the hospital gown. He was reading a magazine that lay on his tray table. All four of his stumps were wrapped as he waited to be transferred to a rehab center. Williams introduced himself. Brown held out a stump to shake hands. Brown had no idea who Williams was.

When Williams explained the sequence of events that had happened with him, Brown said he was happy that he was alive even though he was appropriately depressed about losing his limbs.

"Many people shy away from disabilities. When a person is actually facing such a situation, many if not most of them, want to live. They might say I may be paralyzed but I love life," said Prager.

As Prager speaks, the phone on the left side of his desk starts ringing. Dressed in a crisp off white shirt, Prager listens to the caller patiently. The call is from the ICU. He rubs his hand across the forehead and scribbles the details of the case on a white paper lying on his desk. There is a moment of silence after Prager drops the phone and prepares to head to the ICU.



The names of family members, one of the doctors, his colleague, and the patient have been changed, along with some of the patient's personal details for purposes of confidentiality.

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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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