The difference the way the justice system treats parents who want to keep their kids alive versus the way the justice system treats parents who want to let their kids die is so clear to me.
And I feel that this difference is to save the system money. It is not in the best interests of the child.
But there you go.
The ethical underpinning of our society is gone.
We are floating in the ether doing whatever is bureaucratically expedient to save the system money and labelling this junk as being in the "best interests of the child".
It's all because of prejudice towards the disabled citizens and the costs of keeping them alive.
It's all about human rights abuses but then no one cares except of course the families.
#Euthanasia--Not Dead Yet--It's all about the best interests of the health care system and not the best interests of the kid.
This terminally ill infant will be allowed to die. But first, his parents will say goodbye.
By Lindsey Bever June 30 at 4:35 PM
A British couple have been given more time with their terminally ill son after an emotional court battle and uproar over when and where Charlie Gard would be disconnected from machines helping to keep him alive.
Charlie has a rare genetic condition and resulting brain damage that has robbed him of his ability to move his arms and legs, eat or even breathe on his own.
His parents had said doctors at Great Ormond Street Hospital for Children in London were planning to remove the 10-month-old from life support Friday but have now decided to postpone it.
“Together with Charlie’s parents we are putting plans in place for his care, and to give them more time together as a family,” a spokesman for Great Ormond Street Hospital for Children NHS Foundation Trust confirmed in a statement to The Washington Post. “We would ask you to give the family and our staff some space and privacy at this distressing time.”
Charlie's parents and their attorney could not immediately be reached for comment, and the hospital said it could not provide specific details about Charlie's case.
British courts decided that Charlie should be allowed to die after a heartbreaking legal battle in which doctors asserted that the child had no chance of survival, and Charlie's parents argued that there was an experimental treatment in the United States they had not tried. The case was taken all the way to the European Court of Human Rights, which declined to hear the case Tuesday, upholding previous court rulings that it was in Charlie's best interest to withdraw life support.
Charlie's parents, Chris Gard and Connie Yates, appeared on video Thursday, sobbing and saying their son would be removed from life support Friday and take his last breaths at the hospital.
“He'd fight to the very end, but we're not allowed to fight for him anymore,” Gard said in the video statement. “We can't even take our own son home to die.”
The parents said the hospital would not give them time to let family members say goodbye.
On Friday, Yates told the Daily Mail that the hospital had agreed to the parents' request.
“We have been in talks today with Great Ormond Street and they have agreed to give us a little bit more time with Charlie,” she told the Daily Mail. “We are really grateful for all the support from the public at this extremely difficult time. We're making precious memories that we can treasure forever with very heavy hearts. Please respect our privacy while we prepare to say the final goodbye to our son Charlie.”
Charlie's parents said Thursday that since November, they have been talking with doctors at Great Ormond Street Hospital for Children about their son's end-of-life care.
One option, the couple said, was to let Charlie die at home.
“So we chose to take Charlie home to die,” his mother said Thursday in the video, which was posted on YouTube. “And we have said this for months that this is what we want. That is our last wish, if it went this way — the way it's gone. And we've promised our little boy every single day that we will take him home because that is a promise we thought we could keep.”
Charlie's father said in the video that they want to take their son home and give him a bath, cuddle with him on the couch and let him rest in a crib he has never slept in.
“We're now being denied that,” Gard said. The parents said hospital personnel told them they could not arrange transport for Charlie and, when the parents offered to pay for it, the parents said the hospital personnel told them that was not an option.
When asked about those claims, a spokesman for Great Ormond Street Hospital for Children NHS Foundation Trust said in a statement: “As with all of our patients, we are not able to and nor will we discuss these specific details of care. This is a very distressing situation for Charlie’s parents and all the staff involved and our focus remains with them.”
Monsignor Vincenzo Paglia, president of the Vatican's Pontifical Academy for Life, issued a statement Friday, saying that the situation has “meant both pain and hope for all of us.”
“We feel close to him, to his mother, his father, and all those who have cared for him and struggled together with him until now,” he said in the statement, according to Vatican Radio.
He also noted the “heart-rending pain of the parents” in trying to determine what is best for their child.
“The proper question to be raised in this and in any other unfortunately similar case is this: What are the best interests of the patient? We must do what advances the health of the patient, but we must also accept the limits of medicine,” he said. He added that, “Likewise, the wishes of parents must be heard and respected, but they, too, must be helped to understand the unique difficulty of their situation and not be left to face their painful decisions alone.”
Charlie was born in August with a rare genetic condition called infantile onset encephalomyopathic mitochondrial DNA depletion syndrome, or MDDS, according to court records.
The term depletion refers to the markedly decreased amount of mitochondrial DNA found in muscle, liver and brain tissues in these disorders. These are severe disorders presenting in early infancy or childhood with profound weakness, encephalopathy, seizures and liver failure.
Weeks after birth, Charlie was struggling to hold up his head and was not gaining weight. At the two-month mark, he had become lethargic, and his breathing had become shallow, according to court records.
Charlie was transported to Great Ormond Street Hospital for Children, where he has been ever since.
Earlier this year, doctors concluded that nothing more could be done for the terminally ill infant. Charlie's parents pushed back, arguing that there was an experimental treatment in the United States.
Charlie's mother wrote on a GoFundMe page several months ago that she and Charlie's father had hope:
After endlessly researching and speaking to Dr's all over the world we found hope in a medication that may help him and a Dr in America has accepted him in his hospital. It hasn't been tried on anyone with his gene before (he's only number 16 in the world ever reported) but it's had success with another mitochondrial depletion syndrome called TK2 which is similar — it's helping children to get their strength back and live longer! We strongly feel as his parents that Charlie should get a chance to try these medications. He literally has nothing to lose but potentially a healthier, happier life to gain.
Great Ormond Street Hospital went to the courts with this question: Was it legal, and in Charlie's best interest, for the hospital to remove the child from life support — even against his parents' wishes?
In a ruling in April, Justice Nicholas Francis of the Family Division of the High Court of Justice wrote that there was “unanimity among the experts” that the therapy could not repair structural brain damage.
“Transporting Charlie to the USA would be problematic, but possible,” he wrote. “Subjecting him to nucleoside therapy is unknown territory — it has never even been tested on mouse models — but it may, or may not, subject the patient to pain, possibly even to mutations. But if Charlie’s damaged brain function cannot be improved, as all seem to agree, then how can he be any better off than he is now, which is in a condition that his parents believe should not be sustained?”
He said it was “with the heaviest of hearts but with complete conviction for Charlie’s best interests” he decided that the hospital could withdraw treatment, except for palliative care, to let Charlie “die with dignity.”
An appeals court, then a supreme court, upheld it, according to the National Review.
After the European Court of Human Rights issued its decision Tuesday, Great Ormond Street Hospital said it marked “the end of what has been a very difficult process.” But the hospital said in a statement, “There will be no rush by Great Ormond Street Hospital to change Charlie’s care and any future treatment plans will involve careful planning and discussion.”
What's most important from where the world meets Washington
Yates, Charlie's mother, said through tears Thursday that Aug. 4, 2016, was the best day of their lives because it was “the day that Charlie was born.” June 30, 2017, she added, would be the worst day of their lives.
“We know what day our son is going to die, and we don't even get any say in what happens to him,” Charlie's father said.
This post has been updated.
RIGHT OR WRONG
U.K. Courts Grant Mother Right to End Her 12-Year-Old Disabled Daughter’s Life
Supporters of a British mother who was granted the right to end her disabled daughter’s life say the girl is no longer in pain. Critics say she was killed for being disabled.
11.04.14 5:55 AM ET
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 Mirroras “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.