ETHICS COMMITTEES FACING TOUGHER ABORTION DECISIONS Developments in medicine have seen the number of problematic cases soar, as Zhou Wenting reports from Shanghai.

As deputy director of the Obstetrics and Gynecology Hospital of Fudan University, one of the largest maternity hospitals in Shanghai, Jiang Hua sees both joy and despair every day.

Despite the joy of seeing new lives begin, though, he also shoulders a heavy responsibility as deputy head of the hospital’s ethics committee. The panel decides whether a pregnancy should be allowed to go to term if the baby has been diagnosed with a congenital defect or a serious or lifethreatening illness.

Members of the committee are also responsible for discussing the matter with the parents.

“Under Chinese law, there are only two medical reasons for a pregnancy to be terminated after 28 weeks: if the baby is diagnosed with a life-threatening deformity; or if the mother’s health is not suitable for the pregnancy to continue,” said Lin Jianhua, director of the Shanghai Consultation and Rescue Center for Critically Pregnant and Lying-in Women.

In all other cases where parents request an abortion after 28 weeks, the ethics committee of the hospital involved must approve the procedure, she added.

Jiang said committee members understand the importance of every decision they make.

As a result, they try to take all the factors — including the stage of pregnancy, the level of fetal abnormality, potential risks, the family’s situation and their religion — into account to provide maximum protection of the parents’ rights.

“But sometimes we are faced with the dilemma of either obeying the regulations — thereby ensuring the woman’s safety — and respecting the life of the fetus and the family’s right to choose,” he said.

“I look forward to the National Health and Family Planning Commission releasing more detailed guidelines related to identifying different levels of deformity and the appropriate steps hospitals should take.”

Discussions

In 1987, the Shanghai Association of Medical Ethics, the first such provincial-level body in China, was established to facilitate the discussion of ethical standards when patients enrolled for biomedical experiments.

Later, the association’s remit was expanded to areas such as obstetrics, organ transplantation and donation, and assisted reproduction.

Each committee has an odd number of members to prevent voting deadlocks.

For example, the ethics committee at the International Peace Maternity and Child Health Hospital of China Welfare Institute in Shanghai has 15 members.

In addition to specialists from the departments of obstetrics, gynecology, family planning and psychology, the panel also includes lawyers and local residents.

However, over the decades, the number of difficult decisions related to the termination of pregnancy has not fallen.

Instead, technological advances in prenatal diagnosis have uncovered more problems and seen the number of difficult decisions soar, according to Lin, who is also deputy director of the department of obstetrics at Shanghai Renji Hospital.

“Our general principle is that if the illnesses or defect can be rectified with one surgical intervention after the baby’s birth, we will not approve an abortion,” she said.

Late-stage termination

Despite that basic guideline, some cases still present problems; for example, if a fetus has only one hand or foot, or if it has been diagnosed with a congenital condition such as heart disease, or if the length of the limbs indicates deformity.

“In cases such as these, a family’s request for an abortion presents a dilemma for the ethics committee,” Lin said.

She noted that the procedure can pose a risk to the mother, and most large hospitals decline to perform latestage abortions if the circumstances are not covered by the national regulations.

In most cases, families accept the committee’s advice and send the baby for treatment as soon as possible after birth.

However, according to Jiang, some ethics committees will agree to late-stage abortions in such circumstances to maintain a stable doctor-patient relationship.

“Even after doctors spend hours explaining the risks surrounding late-stage abortion — including hemorrhage, infertility or the need for a hysterectomy — some families are still willing to take the chance, so what can the hospital do?” he said.

“Sometimes when a hospital refuses to approve the procedure, the woman’s relatives visit every day to complain (that the hospital should have noticed the problem earlier), and the hospital is eventually forced to provide compensation so the family can pay for the baby to have surgery.”

Difficulties can also arise when a woman who is less than 28 weeks pregnant considers having an abortion, but a lack of clinical information or hesitation on her part means she does not make the final decision until the pregnancy has advanced to 28 weeks or longer.

“There is a time lag between when a mother-tobe first comes for a checkup and when she receives a medical report from us. It is usually between three to four weeks, but even longer if the process involves amniocentesis,” Jiang said.

Possible solutions

Experts said one solution would be to ensure that all examinations for fetal deformities are completed before the 24th week of pregnancy.

“Problems must be identified as early as possible to give the mother and her family enough time to consider their situation. We believe that every single family would regard giving up a kid as the very last resort,” Lin said.

Specialists have also suggested that every aspect of each case — financial, social and familial — should be considered before the ethics committee makes its decision.

Jiang gave an example where a prenatal diagnosis shows that a fetus has a congenitally deformed hip. Although the condition would not be fatal, it would mean there would only be a very slight possibility that the child would ever be able to walk normally, even after repeated surgeries and rehabilitation.

“When responding to such requests, we first consider whether the fetus displays any medical indications for a latestage abortion, and also the impact of the child on the family,” he said.

“The parents’ attitude plays a key role because a child’s birth is not necessarily a good result if the parents’ desire to save the baby is not strong.”

According to Lin, it is crucial for doctors to explain clearly to couples how serious their baby’s condition is, how many times he or she will require surgery and the cost.

Jiang said the process can be painful for all involved, but development is ongoing and each case provides more material for lawmakers to consider and work with.

“Such cases can prompt widespread public discussion which enables guidelines to be formulated and can help to promote informed legislation,” he said.

FIRST PERSON

LIANG LUWEN / FOR CHINA DAILY