Saving lives, by redefining death

On Saturday, 5 October, the Good Weekend magazine, an insert in the Sydney Morning Herald and Melbourne Age ran an article on organ transplants, “Can you spare a kidney”, focussing on Ms Mandy Sayer wishing to donate a kidney to her dialysis reliant brother, Jason. The piece covered many aspects of the transplant process: whether to wait years for a donor in Australia or to scoot overseas for a transplant; what anti-rejection drugs are needed to accept the newly inserted organ and most interestingly, Sayer raised the issue of the type of transplant: live, deceased or “paired”.

The article eschewed questioning, let alone investigating, the current state of affairs in Australia and the United States, which requires that all donations, other than a kidney and part of a liver - be donated only after death has been determined.

Coincidently, only 48 hours earlier, Harvard Medical School Division of Medical Ethics’ Prof. Robert D. Truog M.D. in the 3 October edition of the New England Journal of Medicine queried the US (and it seems for that matter, Australian) ethical standards whose so-called “Dead Donor Rule” demands that vital organs be taken only from persons who are “dead”. He asks the obvious: why are certain living patients, such as those who are knocking on death’s door but not quite dead and have zero chance of regaining a viable and meaningful life, forbidden (or hindered) from donating their organs, if doing so would benefit others and is consistent with their own express wishes?

Truog and his co-writers recount a recent case, where the parents of a young girl, Amanda Panzini of Manchester, New Hampshire, wanted to donate her organs after a Ford ute ran her over as she was bicycling, leaving her with devastating brain damage.

After being run over, Amanda was taken to a local hospital before being medivaced to specialist centre, Boston’s Children Hospital where she underwent emergency neurosurgery to decompress her skull, but to no avail. She was soon moved into the intensive care unit and placed on life support.

Her cerebral cortex - the part of the brain involved in memory, attention and language - was permanently damaged. Very few such patients ever leave hospital and those who do leave remain in a neurologically devastated state.

Amanda’s mother, Robin understood her daughter’s condition; asked that she be disconnected from the ventilator and that her organs be donated forthwith. But as the clinical lead of the ICU, Monica Kleinman M.D. examined Amanda, Kleinman hit a wall.

While trying to determine if Amanda satisfied all the requirements of brain death, all controlled by the brain stem, she realised that Amanda, despite her irreversible brain damage, had some reflexive neurons in working order: Amanda slightly gagged when the back of her throat was tickled. This meant only one thing: Amanda was not brain-dead. Well not as we currently define it. And there’s the rub. To qualify as brain dead, Amanda had to fail not most, but all of the tests. The bar is set equally high in Australia, according to the Australian Organ Donor Register.

Aware of just how keen Amanda’s folks were on giving meaning to their daughter’s life, Kleinman suggested organ Donation after Cardiac Death, or D.C.D. This would require the “irreversible cessation” of the heartbeat.

Her heart would have to stop for a period of time for her to be declared “dead”, as per the so-called “Dead-Donor Rule”, and only then could vital organs can be removed. As she lay lifeless in the ICU, with a machine doing her breathing and no hope of regaining a meaningful existence, young Amanda had a beating heart and very much viable organs.

The process of D.C.D. is straightforward.  Amanda’s breathing tube would be pulled out and if her heart stopped within an hour, a countdown would take place. An arbitrary 5-minute countdown. If within those five minutes there was zero sign of cardiac activity, she would be declared “dead”; the heart would be deemed to have stopped “irreversibly” and surgeons would quickly open up Amanda to remove the organs for transplant. Time here is of the essence. As the organs would quickly degrade without oxygenation.

Darshak Sanghavi, the chief of paediatric cardiology at the University of Massachusetts Medical School four years ago studied Amanda’s experience amongst those of many patients and critiqued the manner in which Americans define death, remarking that removing a ventilator doesn’t guaranty that Amanda would stop breathing any time soon. She may continue to breathe, however erratically, which would mean a return to the ICU.  But this time the ventilator would not be reconnected. Given almost no brain function, she would die, be it in hours or days. The sad fact is that not only would she die, but will take most of her organs with her into her coffin as it only takes a few short hours without a ventilator for most of her organs to degrade to the extent they are not viable for transplanting.

Luckily for all concerned, in Amanda’s case, very soon after she was unplugged from the ventilator she didn’t breathe and her heart stopped. Surgeons took her liver, kidneys and pancreas.

Amen to that.

Amanda illustrates a new form of organ donation that can help address our ever-widening gap between the supply and demand of viable organs: patients who are not quite dead but very much dying, be it from brain death or cardiac death.

With modern technology like respirators and tube feedings, the brain damaged, unconscious Amanda could have been kept “alive” for a very long time. Kept ”alive” with zero possibility of recapturing a viable life. Draining away both her existence and the life her organs could give others.

Truog’s (and for that matter Sanghavi’s) exasperation with the current definition of “death” reminds one of Jeremiah 5:21: ” Hear now this, O foolish people, and without understanding; which have eyes, and see not; which have ears, and hear not“. Simply put, patients have begun dying, and the only uncertainty is when, not if. Patients’ families accept this and ask to donate their relative’s organs. But there’s a roadblock: the patient is not, as currently defined,  “dead”.

So let’s move the roadblock.

The Dead Donor Rule impedes the ability to harvest organs by defining death too narrowly, robbing some patients of their wishes to donate viable organs and resulting in hastening deaths amongst would be transplant recipients.

Just as we have long debated when life begins, perhaps it’s time we debated just when life ends.

There are 1,600 people on organ transplant waiting lists in Australia. 1,600 reasons to start that debate.