PHILADELPHIA — When Joe and Chrissy Rivera sat down with a physician at the Children’s Hospital of Philadelphia to talk about their child’s medical prognosis, the couple had no inkling they were about to become part of a heated national debate.

Their 3-year-old, Amelia, has a rare genetic disorder, Wolf Hirschhorn syndrome, a condition caused by missing chromosomal material. It causes mental disabilities and may include other birth defects. Amelia’s kidneys were failing, and she would need a kidney transplant sometime within the next year or so.

As described in a blog post by Chrissy Rivera, a high-school English teacher, the doctor, who is not named, placed two sheets of paper on the conference table last month, with words highlighted in pink: “mentally retarded” on one and “brain damage” on the other.

According to Rivera, Amelia was being denied a transplant because of her mental disabilities.

“I put my hand up,” she recalled. “‘Stop talking for a minute. Did you just say that Amelia shouldn’t have the transplant done because she is mentally retarded? I am confused. Did you really just say that?’”

Whatever the doctor said, it was a terrible blow for the New Jersey couple. “The tears. Oh, the damn tears. Where did they come from? Niagara Falls. All at once. There was no warning. I couldn’t stop them,” Rivera wrote in her blog post on a website for Wolf Hirschhorn families.

A spokesman for the Children’s Hospital declined to discuss the case, citing privacy concerns. A post on the hospital’s Facebook page, however, stated that the institution had “never declined a patient for transplant based solely on their cognitive status, and we have performed transplants on many children with disabilities. … We make all decisions regarding eligibility using a non-discriminatory approach, after a multidisciplinary assessment and discussion, which is the standard of practice throughout the country.”

Doctor’s Orders

While it is impossible to make an informed judgment about Amelia’s case without knowing more about her medical condition, the child’s story has nevertheless touched a nerve and highlighted serious questions about how individuals with disabilities are regarded in the ethical framework of modern medicine.

Christian Brugger, who holds the J. Francis Cardinal Stafford Chair of Moral Theology at St. John Vianney Theological Seminary in Denver, said that more and more medical practitioners today are regarding some lives as less “worth living” than others.

“I don’t think that anybody would quibble with the sad fact that frail seniors are routinely pressured to sign end-of-life directives [that frequently put an end to medical treatment],” said Brugger, who added that this practice is having an effect: Elderly patients are “increasingly” opting to forego medical treatment that might give them additional years of life.

An increasingly popular practice, said Brugger, is asking patients to sign what is known as the POLST, which stands for “Physician Orders for Life-Sustaining Treatment.” All too often, Brugger said, this can lead to just the opposite of life-sustaining treatment, even when an older patient could benefit from that treatment.

While the POLST is couched in terms of “honoring” patients’ wishes, Brugger worries that its forms consist of a series of “exclusionary statements” that lead one to reject, while still able-bodied, later treatments. Once the patient has ticked off the boxes, a physician signs the form, making it a doctor’s order that can’t be reversed. “The POLST is spreading like wildfire at the state level,” Brugger said.

In the cases of children like Amelia or elderly patients, the question is the same: Is the life of a child with a mental disability or a grandfather in a wheelchair worth less than that of others without disabilities when it comes to making decisions about medical treatment?

Princeton University jurisprudence professor Robert George set guidelines: “The first principle that has to be constantly borne in mind is the principle that every member of the human family possesses a profound, inherent and equal dignity. There are no natural inferiors or superiors. We don’t get our fundamental worth from the quality of our intellects, or from our strength, beauty or social status,” said George.

“If you begin from that principle and make decisions based on that principal,” George said, you can’t arrive at the conclusion that somebody “has more intrinsic worth because of intellect. Who made that rule?”

“The short answer is that [people with mental disabilities] should not be denied medical treatment anybody without a disability receives,” said John Brehany, executive director of the Catholic Medical Association. “You can’t say This life isn’t worth as much as somebody else’s.”

“But,” Brehany added, “receiving a transplanted organ is complex, before and after the procedure, not like having the oil changed in your car. So some aspects of a mental disability, including medication a person with a disability is on, might complicate the picture.”

Complicating Factors

Several people interviewed for this story cited as complicating factors such matters as whether the patient requires other medications that might cause the transplant to fail and whether there is a supportive family to make sure that necessary procedures are followed so that the organ isn’t rejected.

Principle considerations should be the patient’s chances for surviving the operation and the probability of the organ’s working, said bioethicist Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania (which is not affiliated with the Children’s Hospital of Philadelphia). Caplan noted that children with Down syndrome are often good candidates for a transplant because “they’ll do fine, have a nice life, and be part of a family.” 

A spokeswoman for the United Network for Organ Sharing, the clearinghouse for organ transplants in the U.S., said that mental disabilities are not included in the computerized system that determines allocation of organs. If mental disability had been considered, she said, it would have happened at a lower level in the process. The United Network for Organ Sharing computer would not, in effect, “know” about the disability.

The Rivera family, however, has indicated that they do not require an organ donor — somebody in the family is prepared to donate a kidney for Amelia.

This can present an ethical problem if the donor is another minor child. George said that this can be “very highly problematic” because a level of consent is essential.

But George said that organ donation by a minor can be ethical in some circumstances.  “I’d want to make sure a 14-year-old was mature enough to make such a decision and had the family support to say No if he doesn’t want to donate,” George said.

The issue underlying medical treatment for disabled patients revolves around two views of the value of human life: a utilitarian view versus one that upholds the sanctity of life.

“You have many within the medical intelligentsia, exemplified in publications such as the New England Journal of Medicine, and also among the media elite, advocating for cost-benefit controls that would almost certainly be based on invidious discriminations,” said Wesley Smith, a prominent bioethicist and writer affiliated with the Discovery Institute.

“You have the elite pushing for ever more utilitarian practices,” Smith said, “and moving away from the principles of the Hippocratic Oath in which the doctor proclaims sole allegiance to the patient.”

Smith said that many doctors graduating from medical school today do not even take the ancient Hippocratic Oath, which would rule out such practices as assisted suicide and abortion.

Smith said that a “growing belief in quality-of-life judgmentalism” among elites is behind the idea that doctors can ethically prevent some suicides while at the same time assisting others to commit suicide.

Quality of Life

A system of judging the quality of life has been institutionalized in the United Kingdom. The quality-adjusted life year — or QALY — evaluates how many “quality years” a patient might derive from a particular treatment. If, for example, a patient has a mental disability or uses a wheelchair, the quality is judged lower than for an able-bodied person. Some health-care experts say that the U.S. is headed for something similar.

Grace Marie Turner of the Galen Institute, which advocates against Obamacare — as the nationalization of health care under the Patient Protection and Affordable Care Act is commonly called — called QALY “a specific tool used in Europe to determine how much your life is worth to the government and put a dollar-amount value on your life.”

“What we see in Europe is that people have to be able to command international media attention [to obtain otherwise denied medical treatments], but an ordinary person won’t be able to do that,” said Turner.

If the Supreme Court does not overturn Obamacare and Congress allows the system to remain in place, boards will determine what medical procedures Americans will be able to receive. The Obama administration will be in charge of setting up these boards.

“I am very concerned about a health-care system administered by an administration that has attitudes towards human life that this administration has,” said Brugger. The medical boards are likely to be such that Amherst College political scientist and Catholic convert Hadley Arkes predicts these life-or-death decisions will be made by “utilitarians winging it.”

What medical professionals believe is also important. “Studies have shown that the religious beliefs of physicians, nurses and other health-care workers influence how they approach care of their patients,” said Edward Furton, ethicist and director of publications at the National Catholic Bioethics Center.

“Studies have also shown that health-care workers who are secularized are equally influenced by their own non-religious outlook,” he continued. “The more medicine separates the patient from the idea of our equal creation before God, the more we can expect the utilitarian view of the human person to go unchecked.”

On a more optimistic note, Robert George often puts forward an example of how unfettered utilitarianism would work: If, George posited in a talk on natural law and utilitarianism, a gifted person who is likely to make contributions to society is in need of a liver transplant but has a rare blood type, why would it be wrong to simply remove the liver from a person who is a match but is mentally disabled?

George noted the listeners’ instinctive recoil from this hypothetical proposition, suggesting that utilitarianism has not won yet.

“There is currently a struggle within medicine pitting the Hippocratic ethic against a utilitarian ethic,” George said. “Much depends on which side prevails.”

As for Amelia Rivera, there are reports that her family and the hospital are still in conversation about her treatment, and it is not yet clear what the outcome will be.

Register correspondent Charlotte Hays writes from Washington.