She wondered if her daughter found the songs calming. Her hands are placed on rolled cloths, to keep them from contracting into fists. Two seconds later, Jahi cocks her right wrist. Move your hand so we can see it. Move it hard. Her face is expressionless and still. After fifteen seconds, she wiggles her toes.
Seven months after moving to New Jersey, Jahi began menstruating. Is there another diagnosis? In late August, , Jahi was released from St. Her discharge diagnosis was brain death. She moved into a two-bedroom apartment that Nailah and Marvin had rented in a colorless condominium complex near New Brunswick. They slept on an air mattress on the floor, and Jordyn, who had just moved to New Jersey, to begin first grade, slept on the couch.
Jahi had the brightest room, with a large window overlooking the parking lot. Nurses, paid for by Medicaid, provided twenty-four-hour care, in eight-hour shifts. Speak clearly, softly, slowly. Not long after the family moved in, two detectives and a patrol officer showed up at the apartment. The Franklin Township Police Detective Bureau had received an anonymous tip that there was a dead body in the house. The cops concluded that there was no criminal activity and left, but the nurse on duty was rattled, and she quit. Nailah had for months been flooded by e-mails and Facebook messages accusing her of child abuse or of exploiting her daughter for money.
Strangers started a petition on Change. Nailah read the Bible more than she ever had, and she tried to entertain the idea that God had chosen her to suffer this way because she was resilient enough to endure it. But large areas of her cerebrum, which mediates consciousness, language, and voluntary movements, were structurally intact. Machado also performed a test that measures the interplay between the sympathetic and parasympathetic nervous systems, a relationship that regulates states of arousal and rest.
Everyone is so proud of you. Alan Shewmon, who had just retired as the chief of the neurology department at Olive View-U. Coimbra, called ischemic penumbra.
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If blood was still flowing to parts of the brain, however slowly, then, in theory, some degree of recovery could be possible. Shewmon has given a diagnosis of brain death to roughly two hundred people. He is measured, formal, and precise. He pulled a desk chair next to her bed and, with a notepad in his hand, watched her for six hours. Jahi did not respond to his instructions to move her limbs, a fact that Shewmon did not find particularly revealing.
He had analyzed the videos that Nailah had recorded, and they suggested to him that Jahi was in a minimally conscious state, a condition in which patients are partly or intermittently aware of themselves and their environment. After Shewmon left, Nailah took more videos. Shewmon eventually analyzed forty-nine videos containing a hundred and ninety-three commands and six hundred and sixty-eight movements. This cannot be reasonably explained by chance. Then she bent her pinkie.
Four seconds later, Jahi moved her middle finger again. He went to medical school, in , and then specialized in neurology, because he wanted to understand the relationship between the mind and the brain. For the next fifteen years, he believed in and defended the notion of brain death, but in the early nineties he began to feel increasingly troubled by the concept. In , Shewmon was asked to consult on the case of a fourteen-year-old boy who, after falling off the hood of a moving car, had been declared brain-dead.
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He survived for sixty-three days and began puberty. Shewmon began researching similar cases, and found a hundred and seventy-five people, many of whom were children or teen-agers, who lived for months or years after they were legally dead. The longest survivor was a boy who had been declared dead after contracting meningitis, when he was four. His heart beat for twenty more years, during which time he grew proportionally and recovered from minor wounds and infections, even though he had no identifiable brain structure and the outside of his brain had calcified.
In a personal note appended to the end of the report, the chairman of the council, Edmund Pellegrino, expressed regret regarding the lack of empirical precision. In , after Nailah filed her taxes, her accountant called to tell her that her submission had been rejected by the I. She decided not to fight the I.
Nailah sold her house in Oakland to pay her rent in New Jersey. She almost never left the apartment. Consumed by guilt for having urged Jahi to have her tonsils removed, she was given a diagnosis of depression. But this is one situation that I cannot adapt to. The hospital argued that deceased bodies do not have legal standing to sue.
Dolan submitted video recordings of Jahi and declarations from Machado, three New Jersey doctors who had examined her, and Shewmon, who concluded that Jahi had fulfilled the requirements of brain death at the time of her diagnosis but no longer did. The hospital hired its own medical experts. Thomas Nakagawa, who wrote the guidelines for pediatric brain death, said that the only accepted criteria for brain death were those stipulated by the guidelines.
MRI scans, the heart-rate analysis, the videos of movement, and the evidence of menstruation were not relevant to the criteria. A similar debate unfolded in , when an Ethiopian college student, Aden Hailu, was declared brain-dead at a hospital in Nevada after exploratory surgery for stomach pain. Truog, the director of the Center of Bioethics at Harvard, said that once, when he gave an academic talk on brain death, he described it as a catastrophic brain injury, rather than death. What you are doing is immoral: to put doubts in the minds of people about a practice that is saving countless lives.
In order to support public trust in the scientific enterprise, I guess I feel that the medical profession is always going to be better off, in the long run, if we speak honestly and truthfully about what we know. I believe it is a morally virtuous thing to do and we ought to facilitate it. We are doing the right thing for the wrong reasons. Although Jahi has come to represent a different way of defining life, her family is not sure that they would keep her on a ventilator if she still fulfilled the expectations for brain death.
Do you want to live? Are you suffering? Because many days I do want to die. But then I see her every day, trying her best. Last December, I visited Nailah at her apartment, and she said that she had begun to feel more hopeful.
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She felt more confident that the courts would allow her to bring Jahi home to Oakland, although the trial has not yet been scheduled. Recently, she had asked Jahi how long she thought it would take. Six months? A year? A year and a half? Jahi squeezed her hand after the third question. Nailah took it as her answer. Jahi wore pink pajamas, and her face was clear and smooth but bloated, a side effect of a steroid she takes to raise her blood pressure.
Her eyes were closed.
Her hair was in thin braids that Nailah worried were getting thinner. Stacey, a nurse who had been caring for Jahi for the past year, stood by her feet. Stacey had spent the morning reading her a Sherlock Holmes story. Every clinical trial to get a new drug or therapy approved by the U.
Phase I tests ask whether the drug is safe for human use and what is the optimal dose. Here, both patient and scientist know that the real drug not a control treatment or placebo is being given, and escalating doses are used to ascertain how much can be used to attack the cancer without producing unacceptable side effects. Their chances of seeing improvement are impossible to quantify, although, of course, treatments are not tested unless there is good evidence from animal experiments to believe they are promising. Treatments established as safe in Phase I move to Phase II, which asks what effect the drug or other therapy has on the disease or disorder.
In Phase II, a single group of patients gets the new treatment and is closely followed to see whether it is working. For conditions less serious than brain cancer, half of the patients in a trial may be randomly selected to receive a placebo—not the standard treatment—as the comparison, but this is rightly deemed unethical where a life-threatening illness is involved.
Since standard-of-care treatment for glioblastoma multiforme is only modestly effective, we view randomizing patients into that treatment as handing them a death sentence, which we refuse to do. At the Brain Tumor Center, we take those ethical considerations further. Instead, we may compare two promising new treatments— for example, a combination of radiotherapy, surgery, and a single newer drug versus a combination of radiotherapy, surgery, the newer drug, and a new pharmaceutical agent being tested. If we run these two treatments concurrently it is easier to compare the data and a success may stand out more clearly.
For an additional comparison, we can use the historical rate of success in disease control achieved in patients who received the standard of care. Not so in many patients with brain cancer. Another challenge for an aggressive approach to treatment is what to do with patients not eligible for clinical trials. The drug is an FDA-approved medication, recognized to be safe and effective in treating some other cancer, but has not been tested and approved to treat brain cancer.
We go ahead and use off-label drugs when we have some evidence that they may help in a particular case. For example, we use a drug approved for colon cancer, CPT It has certainly helped some brain tumor patients, but it does not score a knockout. Using cancer drugs off label puts us at odds with insurance companies, who consider the treatment experimental and often refuse to pay for it.
They claim that they can control medical costs better when they cover only treatments already proven effective for a particular condition in the large clinical trials necessary to win FDA approval. We might agree, if there were alternatives for our patients. But many patients cannot participate in clinical trials. For example, someone might have already had another treatment that would confound our analysis of results if we included that patient in a study.
With standard treatment producing such an abysmal success rate, we think it is unfair not to offer that patient some other chance. She had been told that it was inoperable. Because of the poor prognosis for brain cancer in general, and the propensity of tumors to grow back after surgery, many surgeons do not even try operations in cases like this. One result is that they do not develop the skill that comes with having done hundreds of them.
We believe in giving patients their best chance. As Allan Friedman puts it, time is precious.
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No one lives forever, but he sees his job as getting his patients as much quality time as possible. Many patients he sees have already been turned away by other surgeons.
Allan was an unlikely candidate for excelling at neurosurgery. He now says that, while you may never get used to it, the surgery eventually becomes fairly routine. Now, he does 12 operations in a typical week, each lasting about 4 hours. For example, bleeding is a major problem in brain surgery.
Any chance that a surgical move will cause unexpected bleeding must be anticipated and, if possible, prevented. Here good preparation can make the difference between life and death, disability and normal functioning. To achieve the most intense concentration during surgery, Allan has to distance himself from the person on the operating table.
He says that there are still times during an operation when he catches himself thinking about the person and has to stop for a second to dissociate himself from the human attachment, which distracts him from the mechanical process. The patient, on the other hand, should be distracted if awake during the surgery. There is always a technician talking to the patient. To avoid damaging the language centers of the brain, neurosurgeons electrically probe areas that they consider cutting to see if disrupting the signaling at that location interferes with speech.
If a man speaks several languages, he must be tested in each one because each may be localized in a different brain region. Probing one area may show no effects on the ability to speak English, for example, but cutting it might bar the person from speaking Spanish. One patient of ours was a rabbi who spoke English, Hebrew, and Yiddish, each localized to a different area of his brain.
You do not want a rabbi waking up no longer able to speak Hebrew! Because we deal with the brain, the fear factor among patients is high. Many feel sure they will not be able to tolerate being conscious during the operation. Yet, during hundreds of surgeries he has done on conscious patients, Allan has never had someone become unbearably distraught or agitated.
For the most traumatic parts, such as opening the skull, the patient is under general anesthesia; but any time a patient is conscious there is someone in the operating room whose sole task is to talk to the patient. I wrote a letter to my kids, just in case. In fact, for several weeks after the operation, as she recovered in the intensive care unit, Eileen could not initiate speech.
Eileen also endured three terrifying days when she entirely lost the ability to speak, probably as a the result of brain swelling during recovery. Her speech is entirely normal now, nearly two years after the surgery, but she has some problems with concentration and focus that prevent her from returning to her job ironically, as an oncology nurse. Treatment for cancer, and sometimes the tumor itself, in any region of the brain, can cause this problem.
Eileen has completed her radiation and chemotherapy treatments and at her latest checkup showed no sign of tumor regrowth. Unfortunately, the news is not often as good as it was for Eileen. We are asked why we do not run clinical trials of the drugs and methods we are using for patients who are not already in a clinical trial program. If we began formal testing protocols with these patients, we would be locked into a particular treatment for the duration of the testing.
That treatment might not always be the best option, which really matters if you are one of the roughly 10 percent of patients who survive much longer than you would have with traditional care. One is immunotherapy. How do you get the immune system to recognize and attack the cancer? This would spare healthy tissue and avoid the many toxic side effects associated with current chemical, radiation, and other therapies.
We have advanced now to developing human antibodies and attaching them to radioactive molecules or toxins that harm the tumor when the antibodies home in on it. Collaborating with the National Cancer Institute, our Center has treated about patients this way—more than any other medical center. With several different antibodies and different groups of patients we are in Phase II trials. This year, we will also start a new Phase I study.
Another line of research employs dendritic cells, which are like commanders of the immune system, telling the soldiers what to attack and what to leave alone. When researchers are trying to teach dendritic cells to recognize tumors, one common technique is to grind up the tumor and present it to dendritic cells taken from the patient. Animal experiments suggest, however, that brain tumors have antigens on them that, if targeted by the immune system, could lead to a disease similar to multiple sclerosis MS.
In MS, the immune system attacks healthy areas of the central nervous system. This protein does not induce the MS-like condition in animals when it is used as a target for dendritic cells. So far, we have done this with 10 patients, who have shown no signs of toxicity or MS-like disease. Preliminary tests indicate that they have developed immunity to the protein and have T cells active against it.
It is too early to determine what effect this has had on their tumors. We are also testing new radiation therapy that makes use of a radioisotope called astatine , which is 1, times more active against tumors than iodine , now used for radiotherapy. We have used this new isotope to treat 17 patients with glioblastoma multiforme and seen lengthened survival—in fact, some of these patients are our long-term survivors—and better quality of life. A fourth key area is genetics.
What genes are responsible for turning a normal cell into a cancerous one? Some genes prevent cells from going wrong; others promote tumors. We are looking at one gene, called MRP3, that is involved with drug resistance. If a tumor cell has this gene, and expresses it, then as soon as a toxic agent like a chemotherapy drug enters that cell, the cell is able to pump it back out. Another gene we are studying allows the cancer to spread from one cell to another. In other words, it makes malignant cells migrate, so that surgery often fails to cure the cancer.
Metastasis is a terrifying word to the cancer patient. You do not want to take out one more brain cell than necessary. If we can kill cells that express the gene that causes cancer to spread, or if we can inactivate the gene within those cells, we might prevent metastasis or a recurrence of the primary cancer. Some of our scientists are studying brain cells called astrocytes, which ordinarily support neurons but can become cancerous astrocytomas. What genes induce that change? So far, our researchers have been able to turn normal brain cells into tumor cells in a test tube, and it turns out that at least three molecular abnormalities must be present before that transformation occurs.
Now we can test each gene involved in the transformation to discover what it contributes to the process of cancer development and then how to interfere with that process. Research will soon bring us better treatments. We are immensely optimistic. But the question we are asked most often is: Are you offering false hope to patients now, today, by treating their tumors so aggressively? I have tried to characterize in scientific and ethical terms why we favor aggressive treatment, but how does it make patients and families feel about their chances? We have one good yardstick. The families of patients who have died should be our harshest critics, but rarely has a family said we gave them false hope.
They are glad that their loved one preserved a sense of optimism about the future and got the best shot at prolonging it. When a doctor at home tells a patient that nothing can be done, the patient and his family believe that he is half-dead already. But our team is devoted to quality-of-life concerns and does everything possible to ensure psychological and spiritual support, as desired, for both patient and family.
Our family support center is the model for dozens of similar centers in hospitals across the country.