Letters

by FK-506

As motorists on the NKVE scrambled to let pass the police outriders followed by a Perdana with an IJN logo with a host of other ambulances heading towards Subang Airport on Wednesday afternoon, many suspected the heart that 14 year old Tee Hui Yi so badly required after being placed on an ventricular assist device (VAD) for almost 12 months may have finally arrived. And indeed it had as she had her transplant done almost the same night courtesy of an unfortunate 15 year old accident victim who was declared brain dead at Ipoh General Hospital.

The miracle was all the more phenomenal as Tee Hui Yi’s predicament was highlighted only the day before on the front pages of the New Straits Times. Sadly she is said to have suffered a “hyperacute rejection” of her transplanted heart and had a second one put in which IJN happened to get from a patient from JB. Two hearts all in a day for one patient when none was available for almost a year. Miracles and coincidences do happen just like the statue of Virgin Mary crying blood sporadically in various churches around the world on Christmas. Hopefully Tee Hui Yi’s saga will finally end with her recovering fully.

Tee Hui Yi apparently developed viral myocarditis at the age of two and progressed to end stage heart failure. The indication for the expensive bridge to a natural heart in the form of the artificial ventricular assist device was presumably the failure of medical therapy in not being able to maintain her circulation optimally anymore on conservative therapy. In simple terms, for a future, she would need a heart. The VAD was just a stop gap. But in Malaysia this bridge to a heart or for that matter any other organ can be exceptionally long, arduous and occasionally a bridge just too far, leaving in its trail thousands dead on waiting lists.

Tee Hui Yi herself moaned her predicament repeatedly as highlighted almost routinely by the media and it was a sorry sight seeing this teenager lugging her VAD everywhere not to mention all the anticoagulants and other medication she probably had to take to ward off infection. Towards the end, obvious wasting was noticeable necessitating additional nutrition through a nasogastric tube. Almost two years ago, 16 year old Mohamed Fikri Nor Azmi underwent a similar waiting game when he became the first recipient of the VAD after also being diagnosed as having end stage heart failure as a result of “valvular cardiomyopathy”. The indication for placing this teenager on the expensive VAD and on a waiting bridge to a natural heart was not only less clear but controversial as the country, then and now, still did not have an established organ procurement program. You just cannot set out to sea without first knowing if you can reach port unless you have already decided that you don’t mind drowning. But Fikri was more fortunate and received his heart far earlier.

Whatever the indications maybe and assuming all established criteria to place a VAD had been strictly adhered to, it isn’t quite right to place patients on VADs which have a limited life of their own into patients, not knowing if they are ever going to get a heart. This cannot be ethically correct. Not too long ago, Ismail Merican, the current DG admonished his colleague and this country’s only liver transplant surgeon at that time, K.C. Tan for carrying out living related donor liver transplants at the Subang Jaya Medical Center. Merican howled that what SJMC and Tan did were improper as ignorant patients may “not have been briefed about complications”. Tan, who pioneered liver transplant techniques at King’s College, London, of course left, preferring to base himself in “less ethical” Singapore, leaving Merican to focus on traditional medicine back here in Malaysia.

Why is there such a dearth of donors in Malaysia? Families have been known to backtrack on pledges when tragedy actually strikes and when the question of removing organs is brought up. Despite assurances by religious authorities that organ donation is honorable; people are just not buying it. And unfortunately the hard sell attitude of transplant coordinators aided by the high-spirited overdrive of the mass media in Malaysia is not helping either. Many fail to realize that the most painful thing about losing a family member to a traffic accident is the suddenness. And If you define human death as brain death and give doctors the power to demand or request organs a family member might have his heart or lung ripped out even before they have a chance to mourn.

The situation now in Malaysia is even more tenuous with the public lacking confidence in our medical graduates compounded further by an ineffective health care system that is now renowned for its many medical blunders. Add this to the current perception of widespread political corruption with a judiciary hopelessly entangled in a quagmire from which no one knows if they are ever going to extricate themselves, you will end up with a family or relative not wanting to believe anything the authorities tell you including the fact that their beloved is brain dead.

And is brain death criteria in Malaysia strictly adhered to? Are our anesthetists, neurologists, neurosurgeons or critical care physicians well trained in ascertaining brain death? Will the average Malaysian in the current environment trust the word of the doctor? Will our brain death certifiers be singularly medically unbiased or will they lean towards to a lower criteria as the demand for the organ rises just as in Argentina, Brazil, Chile, China and India or if the VAD’s 3000 hours ticks closer. Abuse of brain death criteria around the world is widespread and quite possibly in Malaysia if some cases highlighted in the media are anything to go by.

In Japan, the name Juro Wada is almost synonymous with how society can turn distrustful of organ donation. In a nation of Shinto Buddhists where the human body is held sacred, Wada wanted to become the first surgeon to do a heart transplant in Japan. And he achieved this in 1968 when he successfully transplanted a heart and the operation was heralded as a victory for Japanese medicine. Controversy began when it was discovered that Wada had been in charge of ascertaining the suitability of the donor, as well as the recipient’s need for a heart.

Soon, doubts emerged about whether the donor had been brain-dead after all. Two and a half months after the operation the recipient died. Records indicated that the recipient might not have needed a new heart in the first place; later testimony suggested that someone had tampered with the patient’s old heart to make it appear closer to failure. Government prosecutors wanted to charge Wada with murder, and the case might well have led to an indictment but for the untimely death of a key witness. This is the type of fraudulence that the medical fraternity here can do without if transplant programs are to progress in this country.

As surgeons the world over scrambled for their piece of glory during Wada’s genre, it was evidently clear that it was always at the expense of the patient. The surgical technique itself developed by Shumway, Lower and Barnard was straightforward but what many failed to realize was that the extensive preoperative preparation, work-up and the post-operative pitfalls in immunological surveillance usually detected by serial biopsies are the ones that will determine if patients are going to achieve long term survival. Journalists with rudimentary medical knowledge did not have the critical thinking to assess endpoints of success or gauge why most patients actually die in the pre and post-operative periods choosing rather to focus on the glamour of the actual surgery.

A successful heart and lung transplant program should yield a survival rate of at least 10 years by today’s standards. This country has done less then 20 in 10 years and there have been reports of unusually early complications. Even if allowances were given for a learning curve, patients reportedly dying of dengue, hyperacute rejection, infection and accelerated atherosclerosis in less then two years, if media reports are to be believed, means our programs are short of the basic sciences technological base very much required to keep such programs afloat and credible. Even within the medical fraternity no one knows the short, medium and long term results of mortality and morbidity rates of all organs transplanted in Malaysia. Many in fact depend on reports from the “New Straits Times Journal of Medicine” to announce such results. Hitching a ride on a space rocket is easy but to keep the rocket consistently flying between earth and space requires meticulous planning and focus.

Our transplant coordinators should re-strategize and focus instead on organs that are not culturally taboo, does not involve brain death and are well within our resources. Specifically they should pay greater attention to corneas, bones, much needed kidneys as well as living related liver transplants. These transplants may be less glamorous but a long and gratifying track record in these areas may warm Malaysians eventually to actually accepting brain death.

They may then one day think nothing of seeing their loved one having his/her heart/lungs/liver removed and declared dead instantly. That day may come or it may not. But neither the medical community nor the media should pile the pressure on the public to hasten this process. To do so will only arouse suspicion or turn prospective donors off completely. Hopefully someday we will have a primary health care system that will prevent the emergence of most diseases but until then we should avoid descending into the questionable achievement of killing people to save the dying.