This past August, Justice Eleanor King, a high court judge in the United Kingdom, granted Charlotte Fitzmaurice’s request to stop giving life-sustaining hydration to her 12-year-old daughter, Nancy. In the ruling, she expressed her admiration for Ms. Fitzmaurice. “The love, devotion, and competence of Nancy’s mother are apparent,” said Justice King. “Please, can you tell Nancy’s mother I have great admiration for her.”
Nancy was born with meningitis, septicemia, and hydrocephalus. She was blind. With the help of mobility aids and a feeding tube, she lived well past her initial prognosis of death by age 4. According to her mother, her developmental age was equivalent to a six-month-old child’s. Nancy enjoyed music and hearing birds chirp and the sound of children playing.
Two years ago, however, Nancy became ill with a post-surgical infection that caused her immense pain. Ms. Fitzmaurice described her daughter’s condition to The Mirror as “screaming and writhing in agony.” Strong pain medications such as morphine and ketamine did not help. Even the doctors at the prestigious London children’s hospital Great Ormond Street supported Ms. Fitzmaurice’s petition to end her daughter’s pain—and her life.
The case set a precedent in the U.K. Before, patients had to be terminally ill and require life-support for breathing in order to be considered for euthanasia. Nancy Fitzmaurice met neither of these conditions.
Although Nancy died in August, news of her case only bubbled into the British tabloids last week, because, according to The Mirror, the parents came forward with the details in the hope that similar decisions could be made by parents and doctors, without requiring intervention from courts.
The case offers some interesting contrasts with one that was heavily covered by the U.S. press this past week: that of Brittany Maynard’s physician-assisted suicide. Maynard was 29 years old at the time of her death, able to request drugs from her physician after considered reflection. Nancy, on the other hand, was incapable of communicating her wishes. Even had she been a typically developing 12-year-old, she would arguably not have had the reflective capacities and life experience to decide whether her life was worth living despite great pain.
While Maynard made her own decisions, Nancy’s medical decision-making was in the hands of her mother. Maynard played an active part in her own death by taking prescribed lethal drugs, while Nancy’s caregivers passively withdrew nutrition and hydration, letting her die instead of actively killing her. Nancy relied on others to make her medical decisions for her. “In pediatrics, young children have never been competent to make medical decisions,” said Steven Joffe, associate professor of medical ethics and health policy at the University of Pennsylvania Perelman School of Medicine, in an interview with The Daily Beast. “Unlike with previously competent adults, we can’t rely on the patient’s known values or former statements.”
The Autistic Self-Advocacy Network (ASAN) issued a press release condemning the decision to withdraw Nancy’s hydration and nutrition. “We’re concerned that press coverage did not include a disability-rights perspective,” Ari Ne’eman, president of ASAN, told The Daily Beast. “One of the most frustrating things about this issue is that people imagine that it’s between religious zealots on one hand and humanists on the other.” Some of the opposition to physician-assisted suicide, euthanasia, and the withdrawal of life-saving treatment is not from right-wing or religious groups, but secular disability-rights activists on the left. “This issue is not right or left in the culture wars,” he said.
What Ne’eman worries most is that Nancy died not to relieve her pain, but because she was disabled. “The media coverage implies that those who need a feeding tube would be better off dead. Nancy’s killing puts into action longstanding statements that it would be better to be dead than disabled,” he said. “People have trouble imagining that people who require assistance with eating, breathing, getting dressed have lives worth living.”
The tabloid press coverage so far, which has been very sympathetic to Ms. Fitzmaurice, does seem to be blurring the line between whether hydration was withdrawn because Nancy was in pain or because Nancy didn’t have a good quality of life. For example, The Mirror says that Nancy “could not walk, talk, eat, or drink. Her quality of life was so poor she needed 24-hour hospital care and was fed, watered, and medicated by tube.” Which may indeed sound like a wretched quality of life to those unfamiliar with disability, and the phrase “watered” is further dehumanizing.
However, this life is by no means in and of itself a guarantee of a life not worth living. One of my sons has disabilities. He does not walk, talk, eat, or drink, and he gets his nutrition—and watering!—through a feeding tube. (He does not, however, require 24-hour hospital care.) Yet he plays catch with his brothers, tinkers on his toy piano, swims, giggles uncontrollably when someone wears a silly hat, explores gardens, cuddles, lets people know when he’s mad at them, demands (non-verbally) to have books read to him. There’s a lot of pleasure and socializing in his life.
Nancy, according to her mother, was at least somewhat responsive to the environment, often happy and engaged. So presumably the decision to withdraw treatment should not rest on her developmental level or the fact that she had a feeding tube, but the fact that she was in great pain. “Sometimes you might withdraw a ventilator in cases of very severe and permanent neurological damage,” Joffe said. He stressed that he could not comment specifically on Nancy Fitzmaurice since so little was known about the case, but suggested, “most pediatricians would hesitate to withdraw medical nutrition and hydration with kids, especially if a kid is interacting in a way that a six-month-old interacts. It’s hard in those circumstances to say quality of life is so poor that it’s a life not worth living.”
The question, then, should not be whether Nancy’s life was worth living due to her disability, but what to do about Nancy’s apparently unbearable pain. Ne’eman suggests there are other palliative options that might have preserved her life, such as a medically induced coma. He worries that pain is a front for the real issue—a devaluing of people with disabilities. “Very frequently what is referred to as ‘pain’ is actually a broader determination of quality of life,” he said.
“The disability-rights view properly cautions us that we should not discount the quality of life of people with disability. There is a real risk that we may leap to conclusions about quality of life that are not based on any real knowledge," said Joffe. “I take that message very seriously.”
Arthur Caplan is the director of medical ethics for NYU Langone Medical Center. In an interview with The Daily Beast, he said that he understood the concerns of disability-rights advocates and thought that it was important to have “guardrails” against slippery slopes. “These decisions should not be made in private, but with an ethics committee,” he said. It is highly unusual that a child is in severe, unremitting, inameliorable plain, he noted. “But if you consider the case of a child in severe pain, cognitively unable to understand that pain,” he said, “it might be ethical to pull all care, if that’s the only way to get pain under control.” He further suggested that rather than withdrawing hydration, he would be inclined to keep increasing pain medications even though doing so risks the patient’s ability to breathe. “I would be risking terminal pain medication,” he said. “The potential benefits outweigh the risk.”
Ne’eman argues that Nancy’s case is already a step onto the slippery slope downward. We used to consider terminal illness a necessary condition for withdrawal of treatment. Now, it seems, we no longer do.
Jeff McMahan is a professor of moral philosophy at Oxford University and a leading ethicist, whose research focuses more on the broader ethical issues at stake than specific policies. He has an unorthodox view of Nancy Fitzmaurice’s case in several ways. First, he thinks the fact that Nancy did not have a terminal illness is not a reason to avoid withdrawal of treatment. In fact, he said, it should give her caregivers all the more reason to consider withdrawal of life-sustaining fluids. “Someone with a terminal illness will die soon anyway,” he said. “Someone without a terminal illness can go through years and years of terrible suffering.” It’s that latter group, he thinks, who most need the ability to decide to die.
McMahan agrees with disability-rights advocates to a certain extent, stressing that there is “some force and validity” to what they’re saying. A case like Nancy’s, however, distinguishes his view from theirs. “Disability advocates are correct that we may acquiesce too readily to claims that someone’s life isn’t worth living, and form mistaken beliefs about what life is like for people with disabilities,” he said. But applied to this particular case, he said, “it’s nonsense,” given that Nancy’s unrelenting pain could render her life not worth living quite apart from her disability.
McMahan noted that if we agree with the disability-rights view, then that would mean that we’re saying that when people take pets to vets to be euthanized, “what they’re really doing is saying that the animal’s life is not worth living.” But they take their animals to the vet precisely because they care about their animals.
I asked McMahan if he thought it morally preferable in a case like Nancy’s to withdraw treatment rather than giving lethal drugs. He said he agreed that there is a moral distinction between doing harm and allowing harm to happen. It is because most people feel that there is such a moral distinction that physician-assisted suicide remains illegal in most places, while withdrawing treatment is, under certain circumstances, usually legal. However, if someone is experiencing unremitting pain, he said, then death should not be considered harm. Rather, death is then a benefit. “This isn’t a case between doing harm and allowing harm to occur,” he said. “You can either do good, or merely allow the child to benefit. In that case, I would favor active euthanasia.” That is, he would actively aid the child by giving lethal drugs rather than simply allowing death to happen.
While Joffe gives no small consideration to the disability-rights view, he is also inclined to give serious weight to the fact that the doctors at Great Ormond Street backed Ms. Fitzmaurice. Great Ormond Street, he notes, has one of the most extraordinary pediatric palliative care departments in the world—a point McMahan made as well.
Joffe noted that there are indeed cases, albeit very rare ones, in which a patient is suffering pain so severe that it cannot be controlled. What if this were the case for Nancy Fitzmaurice? What if she were one of the rare sufferers of unending pain, and every safe medication had already been given? What if the pain her mother and doctors observed had nothing to do with disability, but was in fact pain? Was there anything else doctors could have done, short of withdrawing hydration?
In cases of unrelievable pain, Joffe said, a doctor can give the patient what’s known as “palliative sedation.” This renders the patient unconscious and thus, effectively relieves pain. So doctors could have done this for Nancy. However, this would not, sadly, have changed much for Nancy. Palliative sedation would have relieved her pain, it is true. But palliative sedation also usually results in the patient’s death.