By Dr Zilfalil Alwi

SITI (not her real name) was a 2-year-old girl suffering from spinal muscular Atrophy (SMA), a progressively fatal neuromuscular genetic disease that result in severe muscle weakness, disability and ultimately death.

Since the age of 3 months, she has been in and out of hospital Intensive Care Unit (ICU) for lung infection and respiratory failure.

The severity of the infection gradually became worse and the duration of respiratory support had to be increased on each occasion.

The doctor told Siti's parents that the condition would get worse and ultimately, she would be totally dependent on the life support machine to stay alive, as her respiratory muscles would be too weak to function.

As ICU beds were limited in number and always in short supply, as well as presenting a huge cost to the health service, doctors were not keen on putting Siti on a life support machine.

During the last hospital admission, the doctors decided not to send her to ICU or to connect her to a life support machine. Siti died five days later due to respiratory failure.

Siti's parents were unhappy with the doctor's decision not to connect her to a life support machine and decided to sue the hospital.

The doctors maintained that further treatment would have increased Siti's distress and that they could do little more than delay death without significant alleviation of suffering.

Almost every day of their working lives, doctors are faced with ethical issues. While it may be acceptable for them to base their decisions on past experiences, accountability for their decisions, or lack of them, have resulted in a more cautious approach to these issues now. Doctors are increasingly compelled to explain and justify their decisions to parents.

The application of medical reasoning to medical decision-making is known as medical ethics. It involves the critical consideration about what should or should not be done in the context of medical practice based on acceptable values, good or bad, right or wrong.

More often than not, it involves a search for morally acceptable answers in areas where there is a conflict of moral concerns. While the answers and decisions made may not be agreeable to all parties, the process through which the decision is reached is equally important as the decision itself.

In the daily practice of a medical doctor, it is quite common to come across parents who disagree with their decision. Most of the time, doctors are reluctant to override a parent's strongly held views, especially when the benefits and burdens of the treatment are finely balanced and it is not clear what is best for the child.

Parental responsibility includes the right to give consent to medical treatment. Parents, arguably, also have equal moral right to make decisions for their children. But can parents claim a right to be involved in any important decision about their child's life, including decisions about medical treatment?

While parental responsibility includes giving consent on behalf of their children for medical treatment, a child should not be allowed to come to serious harm because parents refuse consent for the appropriate treatment. Both parents and doctors are obliged to act in the child's best interest.

Given that parents have a duty to protect their child, any withholding of treatment, given against the wishes of parents, must provide significant benefit to the child. Therefore, there must be a regard to the rights and to have the child's welfare as the paramount consideration.

Any objection to a decision by the doctors by the dissenting parents must be made out of the genuine concern for the child's welfare and not due to other grounds, such as a family or marital dispute.

If it appears that the parents are following a course of action that is contrary to the child's interest, it may be necessary to seek a view from the courts.

Disputes between doctors and parents can be difficult for everybody involved in the child's care. Therefore, reaching an agreement by all involved parties is the best prescription for the child's welfare. If this fails, a decision must be made by the clinician in charge whether to go ahead despite the disagreement and put the onus on the parents who refuse treatment, to take steps to stop it.

There are no simple answers when it comes to issues of medical ethics. The aim should be to provide opportunities for involved parties to engage in responsible decision making.

Fostering a relationship of trust between a doctor and parents is important; it will help the doctor to form a more appropriate management plan and also encourage the parents to follow medical advice in the best interest of the child.

Associate Prof Dr Zilfalil Alwi is a consultant pediatrician and clinical geneticist at the School of Medical Sciences, Universiti Sains Malaysia in Kubang Kerian, Kelantan; and secretary of the Medical Genetics Society of Malaysia. He is currently a Visiting Fellow at Department of Medical Genetics, St Georges Hospital Medical School, University of London. He can be reached at zilfalil@kb.usm.my