EARLY ONE MORNING A few years ago, I drove to the hospital to visit a good friend and his brother, both patients on the renal transplant ward. The streets were empty, so too were the hospital corridors. I was there for a celebration to be marked by the three of us watching the live broadcast of a rugby game, a test match between the All Blacks and South Africa in Johannesburg.
The story had started several months before when Trevor, my friend’s brother, turned up in the emergency department of the hospital close to death. He hadn’t been well for some time and was becoming increasingly tired and lethargic. Earlier that afternoon, he had visited an oral surgeon to seek advice about a white lesion on his tongue. Thinking it might be an oral cancer, the surgeon took a small biopsy of the lesion and sent Trevor on his way. Within a few minutes Trevor’s tongue began to bleed, quite quickly becoming dark in colour and twice its normal size. Already in their car and realising the danger he was in, his wife drove at breakneck speed to my hospital. When they arrived in the emergency department, Trevor was in deep trouble; his tongue was so swollen that the only airway he had was thanks to the tiny space created by his finger pushing his tongue down off the roof of his mouth.
He was immediately transferred to the operating theatres for expert help to secure his airway and save his life. He was met there by an anaesthetist, a surgeon, and nurses. The plan was simple—do an awake fibre-optic intubation. Should that fail, or if Trevor lost his airway beforehand, the surgeon was there and ready to do an emergency tracheostomy.
Trevor was attached to some monitors, a drip was put in, and bloods taken. Sue, the anaesthetist, sprayed his nose with local anaesthetic while an assistant prepared the small-bore flexible bronchoscope. This is a clever device, a narrow tube with a camera on its end, which is advanced through the nose, across the back of the pharynx, round the corner at the back of the tongue and forward toward the larynx. All the way down, she sprayed more local to stop Trevor gagging and coughing and make this uncomfortable procedure as bearable as possible. The bronchoscope is sufficiently small for a breathing tube to be preloaded onto it. Once Sue negotiated the way through the vocal cords into the top of the trachea the breathing tube was advanced off the bronchoscope, giving Trevor a safe airway. This sounds easy but it isn’t. With every breath and cough, the tissues move and the view from the scope’s camera is lost. Thankfully, on this occasion, all went according to plan and without too much difficulty.
Once Trevor was safe, he was sedated and transferred to the ICU, which is where I saw him the next morning. I remember being stunned when I saw his bloods. The creatinine level in his blood, a marker of renal function, was over 1000—the normal range is 60 to 110. His urea, a waste product normally excreted by the kidneys, was 60—the normal range is four to eight—and he was anaemic. I knew immediately that Trevor had end-stage renal failure. No wonder his tongue bled! With a urea level that high, our platelets, which normally prevent bleeding, don’t work. And as for that white lesion on his tongue, that was no cancer—it was what we call uraemic glossitis, another sign of severe renal failure.
I found out later that Trevor’s family had a history of poly-cystic kidney disease, a genetic disorder that results from a mutation in our DNA which can be passed from one generation to the next. His grandfather, father and two sisters had died of this. Trevor knew a fair bit about his disease and the nature of its transmission and although he was being monitored by a renal physician, the rapid deterioration in his kidney function and this weird complication had taken everyone by surprise.
The pattern of inheritance here is one we call autosomal dominant, a form of Russian roulette, where a child can get the disorder by inheriting the gene mutation from only one parent. Each child of a parent with an autosomal dominant mutation therefore has a 50 per cent chance of inheriting the abnormal gene. My close friend Rod, Trevor’s brother, was spared.
The swelling in Trevor’s tongue quickly reduced so after a couple of days we took out his breathing tube and discharged him to the care of the renal service. A week later, Trevor went home but this time with a large-bore dialysis catheter in his neck and instructions to return three times a week.
In the meantime, Rod was making his own plans to donate a kidney to his brother and had contacted the live donor service to begin the exhaustive set of investigations to allow this to happen safely for both of them. The process culminated in the ‘operations’ a few days before the early morning test match.
There we were waiting for the rugby to start at three in the morning in Rod’s hospital room. The TV was set up, the tea made, and soon Trevor arrived from his room next door. His new kidney safely tucked into a superficial space in his left anterior abdominal wall, he was smiling, sartorial with his hospital gown gaping at the back, as he pushed a pole on which hung his IV fluids and a bag full of urine.
However, Rod was not so excited at the prospect of watching the rugby. He was barely awake, drowsy and snoring from the morphine dose necessary to control the pain from his operation. Those were the days before the now much less painful removal of a donor’s kidney through a keyhole incision using a laparoscope. Swooping down Rod’s side was a long, Praxiteles-like wound closing the deep tunnel made by the surgeons to gain access into his retroperitoneum in order to remove one of his kidneys. How ironic, I thought—Trevor looking so chipper, his catheter bag bulging with urine from his brother’s kidney and poor Rod out to it and oblivious to the drama unfolding at Ellis Park.
In most parts of the world there are more people waiting for organs than there are organs available for transplantation. Many will wait for months, some for years, and some will die waiting. In New Zealand, there are about 600 people waiting for transplants, two-thirds of them on dialysis waiting for a kidney, and the rest super urgently needing a heart, a lung or a liver immediately necessary to save their lives.
For people with end-stage renal failure, longevity and quality of life on dialysis are to a large extent related to the underlying disease process at work. Unlike Trevor, the majority of people on dialysis have end-stage renal failure as a result of diabetes. As such, they are not well because of the widespread vascular disease that accompanies it. For them, life on dialysis is both tough and short.
For Trevor, if done well, dialysis could have been very effective, but we knew that a live kidney transplant would be much better, allowing him to live an independent and active life.
Donating a kidney to someone you know as Rod did is called directed donation. It ensures that the kidney goes to a specific individual. Donating to a stranger is called altruistic or non-directed donation and, in this case, the kidney will be given to the next best-matched patient on the waiting list.
Notwithstanding the story of my friend, a good number of donated organs are the result of more tragic circumstances, from people who suffer a severe injury to their brain and become brain dead. They also come from a smaller group of patients with a severe brain injury who do not become brain dead but die within an hour of being removed from a ventilator.
Diane had suffered from brittle asthma all her life—a form of the disease that is severe, unpredictable and often recurrent. As a child, she’d had many admissions to hospital but by the time she became a teenager, she was better settled on steroid inhalers and Ventolin and her breathing seemed to improve. However, one day, quite suddenly when she was alone at home she had a severe asthma attack. Despite using her home nebuliser she did not improve. Breathless and gasping, she called an ambulance. By the time the paramedics arrived, she was unconscious and in cardiac arrest, the flatline of asystole showing on the monitor. The paramedics began CPR, took over her breathing, and gave her several rounds of intravenous adrenaline. After twenty minutes, her heart started but she remained totally comatose. Diane was eighteen years old.
Strangely, when she arrived at hospital twenty minutes later and we listened to her chest, there was no sign of the tight wheeze that had caused her collapse and on first glance she looked so peaceful that a bystander could have thought that she was simply asleep. Tragically that was not the case. Despite all that we did to improve her condition, the damage was done and after 48 hours, it was evident that Diane had become brain dead.
Tavita was a property developer and farmer from down south. He was a fit and healthy man who loved nothing more than working on the land. Early one morning, he and his two sons were shaping a new road on the edge of their property. Tavita was at the helm of a large earthmoving machine when its accelerator jammed and the huge machine left the road. He jumped off and landed awkwardly, the back of his head hitting the ground with an audible thump. By the time his boys got to him he was deeply unconscious but still breathing. Paramedics arrived soon after, stabilised his neck in a stiff collar, intubated him, and raced to hospital.
On arrival, Tavita had a Glasgow Coma score of three—as low as it gets—and fixed and dilated pupils. Apart from the blow to the head, he had no other injuries. A CT done soon after painted a grim picture. The normal structures of his brain were no longer evident; it looked more like a watermelon after it had been dropped, so bad was the swelling and bleeding. A day or so later, he too was declared brain dead.
Moana was 52. She worked in the city for a high-powered law firm. At a meeting one morning she complained of a sudden and severe headache. She said it felt like she had been hit across the head with a baseball bat. Inside her head, a small aneurysm on a big artery had suddenly burst. Moments later she collapsed to the ground and never woke again. Like Diane and Tavita, Moana also became brain dead.
These are tragic and sad stories and of course there have been and will be many others. Each is the result of something unexpected and sudden that brings with it a kind of grief and shock that is impossible to describe.
Diane, Tavita and Moana all suffered catastrophic neurological consequences associated with a sudden and progressive increase in pressure inside the cranium to the point when that intracranial pressure exceeds the arterial pressure taking blood into the brain. At that point, the brain loses its blood supply causing the brain and brainstem, the very top segment of the spinal cord, to die. This is accompanied by well-recognised physiological changes and neurological findings that are evident on bedside examination and it is these that are used to diagnose brain death—a state where there is an irreversible loss of brain and brainstem function. Following agonising discussions with their families, all three agreed to organ donation.
Each year in New Zealand, another forty or so people join them, the majority dying from a sudden cerebral haemorrhage like Moana, others from trauma like Tavita, and a smaller number as a result of a severe hypoxic injury to the brain like Diane’s.
For everyone’s protection, making the diagnosis of brain death is clearly and strictly defined in guidelines determined by world bodies of intensive care and other professional bodies. In all cases, there is an accepted set of conditions and diagnostic tests to confirm this condition before organ donation can proceed. In this part of the world it is the Australian and New Zealand Intensive Care Society (ANZICS) that sets these guidelines in accordance with evidence and best practice from around the world. Getting to this point has been an interesting journey with many ethical, moral and legal twists and turns along the way.
How we define death has continued to change over the years. Before we accumulated a detailed knowledge of anatomy and physiology, death was signalled when the soul departed the body. With greater knowledge about the function of the heart and circulation, death was said to have occurred when the heart stopped beating and there was no forward flow of blood. Now we recognise death as a process in which different cells of the body may cease to function at different rates. Its definition is complicated further because we know that artificial respiration for patients who cannot adequately breathe for themselves can keep the heart beating, thereby sustaining life in other organs of the body once the brain is dead.
For people like Diane, Tavita and Moana, who have suffered a catastrophic neurological event, artificial ventilation and other kinds of organ support are not only used to buy time to diagnose, provide care, determine prognosis and allow family and loved ones to gather and come to terms with what is going, but also to give them time to discuss organ donation with their families.
The actual diagnosis of brain death must be made by two medical practitioners and is, in effect, a diagnosis of death. The time that brain death is determined becomes the official time of death recorded on a death certificate, despite a patient’s body still being kept alive in an intensive care unit.
Diane, Tavita and Moana had all collapsed suddenly and within seconds lost any chance of recovery. For their families, this was a time of overwhelming shock and disbelief. Their grief is palpable and their emotions raw. It is a time that brings families and friends together to support each other, putting aside many of the things that may have kept them apart before. It is a deep dive into uncharted emotional territory in which great distances are covered in a short space of time. At some stage in this torment, when the winds begin to settle and with the right facilitation, it can become a time for reconciliation of differences, reminiscing and, later, a time for some humour too.
We, the doctors and nurses, travel that distance alongside families doing what we can to help, inform and comfort them. It is a time for truth-telling because there is no turning the clock back. None of us are Superman able to spin the earth backwards in order to turn back time and save Lois Lane’s life. We live in the real world.
Right from the start, the conversations we have set the tone for what’s to follow. Never easy, these need as much care and preparation as if part of a surgical procedure. How we proceed together is determined by how well we connect, and the way that we recognise and address the things that really matter. We have come a very long way since that day when my father, out of huge frustration at the limited but strictly enforced visiting hours, climbed the drainpipe at Wellington Hospital to get a glimpse of my brother Les lying there in traction. That hospital treated my father badly and he never forgave them for that.
What you reap is what you sow. Kindness, compassion, expertise and honesty deliver great rewards when it comes to hard conversations. So too does time spent to help families better understand what has happened and what the consequences of those things are, especially when a terrible outcome is expected. In practical terms, that may mean we meet formally with families many times in one day and, in between, have more conversations with small groups or individuals to get people to a common understanding. Coming to terms with a terrible truth takes time and it is our job to help that process along.
As we get a better sense of the patient’s condition and prognosis, what we discuss in the more formal family meetings evolves over time. I do my best to be totally transparent when it comes to sharing information to help families come to terms with what has occurred and to better understand what I am saying. If I suspect there is a chance that a patient might become brain dead, I will usually mention that as a possibility. Commonly families will pick up on this and, if it is appropriate, then we will embark on a more detailed conversation. With Diane’s family this process was prolonged and delicate.
There can be no such thing as ‘normal’ or ‘expected’ behaviour from parents about to lose a child. Other issues can make the process all the more complicated. In Diane’s case, her mother and father had separated several years earlier and it was clear from the outset that they didn’t get on. She spent time with each of them in a shared care arrangement. One week with her dad, who had remarried and now lived with his new wife and her three children, and the next week with her mum in the old family home. When she collapsed, Diane was at her mother’s house. Sadly she was alone as her mother was at work.
After 36 hours with us in the ICU, despite the breathing tube, drips and monitors, Diane still looked like Diane. Her hair recently washed, she looked even more peaceful than she had when she was first admitted. By this time I had met and spoken with her family many times and they now seemed much closer to accepting the possibility that Diane may not do well.
Even though it was not common practice then, I asked the family whether they would consider joining me and a colleague as we did a further formal assessment of Diane’s neurological state and level of consciousness. They agreed but before going ahead we found ourselves in another conversation about brain death and organ donation.
At that time, I strongly suspected Diane had become brain dead but it was her mother who raised the possibility of her becoming an organ donor. There is no one right time to broach such a sensitive issue with a family in a position like this, but the right time always becomes obvious, at least it does to me. When that time comes I do what I can to provide families with as much information as I can so they can make the right decision for them. Despite always being an advocate for donation, in the early part of my career success was defined by a family agreeing to organ donation and failure by their refusal, but with time I have become less invested in the outcome, wanting only to do the right thing by the family carrying the awful burden of this sudden loss.
With my registrar and Diane’s estranged parents in the room, we prepared to do the formal tests to confirm brain death. Although I have done this many times before, I took even greater care to demonstrate that we were meticulously following the protocols and guidelines, explaining each as we went.
This standardised approach provides the public—and all involved—with reassurance about the process and protects its integrity. Before we can even start making an assessment whether brain death might have occurred, there are a series of questions that need to be answered. The answers to these questions ensure that the diagnosis is sound; that the patient has indeed suffered an irreversible loss of brainstem function and has become brain dead. Once that has been proven, should the family agree to organ donation, the process of identifying potential recipients and harvesting the deceased person’s organs prior to them being transplanted begins.
This is goose bump territory because once done, it unleashes a man-made chain of events that is fuelled by integrity, evidence and good will from all parties. In reality, it is a series of processes that move in many directions, touching and calling on the expertise of many people, often in different parts of a country or across countries. It is profound, moving and magnificent and it starts with an informed, heartfelt ‘Yes, we agree’.
The brainstem is an ancient and essential part of our neurological system. Anatomically, it is the connection between the brain and our spinal cord, the home of functions vital to life and the highway along which all signals travel from our body to our brain and from our brain to our body. It is also the home of many of the cranial nerves, which control how our eyes work, our swallow and cough reflex, whether we can initiate a breath or not and much more.
As complex as all that is, assessing cranial nerve function at the bedside is a relatively simple thing to do and it is this assessment that is used to diagnose brain death.
The diagnosis can only be made by demonstrating the complete and irreversible loss of function of every single one of those cranial nerves while excluding a range of other conditions that might confound our findings.
With Diane’s parents present and watching, we carefully ticked off the preconditions and, one by one, ruled out those other causes:
1.We had been closely observing and monitoring Diane in an intensive care unit for longer than six hours, a sign of irreversibility.
2.We were certain of the diagnosis that she had suffered a severe brain injury from a lack of oxygen (or hypoxia) as a result of her asthma attack and the prolonged period of cardiac arrest associated with it. Repeated examinations by many of us, and the CT findings, showed features that clearly matched the diagnosis.
3.Diane’s temperature was in the normal range for testing—a very low body temperature can itself confuse our testing.
4.There was no evidence of other conditions that could confound the findings from the tests we were about to perform, especially those that resulted from the effects of sedative or other medications.
5.The rest of Diane’s blood tests were normal, ruling out other important conditions caused by electrolyte, endocrine and metabolic disturbances that could make bedside testing less accurate in diagnosing brain death.
6.We agreed that at no stage had Diane been given neuromuscular-blocking drugs to prevent her moving spontaneously or reacting to any other sort of stimulus which would confound the testing.
7.And finally, because she was still quite stable from a respiratory point of view, it was straightforward to examine her cranial nerves and do the apnoea test to ensure that she had irreversibly lost the ability to breathe.
While all of this was going on, Diane remained unchanged, deeply comatose on a ventilator, all her vital signs stable, while her nurse, always at the bedside, attended to the myriad of tasks necessary to keep her free of complications.
For Diane to be declared brain dead, she needed to show no response to any of the tests we were about to embark on and those tests needed to be done twice in the presence of two doctors. So with her parents watching and me giving a running commentary, we went through each of the eight bedside tests for the first time.
First, we tested to see whether Diane showed any sign of consciousness by seeing whether she responded, in any way at all, to a painful stimulus in the area of the cranial nerves. This was done by applying pressure to the area where the supraoptic nerve exits the skull—at a point that is roughly in the middle of each eyebrow. I then applied pressure to the nail beds of a finger and toe on each limb. In each instance, Diane did not flinch or show any physiological response whatsoever to these painful stimuli.
Next, we examined her pupils. Since admission, these had been fixed and dilated—fixed in that they did not constrict to a bright light and dilated because they were the size of saucers. We tested each eye for any direct response to light—there was none. We then shone a light in one eye looking for constriction of the pupil in the other eye, the so-called consensual light reflex. That too was absent.
Next, we tested the corneal or blink reflex. The blink is one of our most rapid and powerful reflexes. It is so quick that in a flash-burn to the face—common in summer when young men throw a light onto a petrol-soaked woodpile—the eyes are rarely injured, while the rest of the face is singed. I opened Diane’s eyes one at a time and with the edge of a gauze swab, touched the cornea, the surface of the eye over the pupil. There was no blink. What I saw and felt was much more than a simple absence of a reflex; Diane was gone, her eyes were devoid of life like those of a fish on ice. Within them I saw only the profound emptiness of death.
Following that, we tested for the loss of integrity of the vestibulo-ocular reflex, a complex set of connections between a number of cranial nerves that control eye movement and balance. Done on one side then the other, 50 to 100 millilitres of ice cold water is slowly injected into the ear canal. An assistant then holds open both eyelids while we watch for any movements of the eyes. In a conscious person, the normal response would be to see both eyes move together toward the side of the stimulation, then flick back to the centre. Diane’s eyes, still as big as saucers, stared blankly upward. They did not move. They did nothing.
Next, we tested for a gag reflex. Using a small wooden tongue depressor, I carefully touched both sides of the back of her throat at the level of the pharynx. Normally this would evoke a powerful gag, a reflex designed to protect us from inhaling food and other material into our lungs. Once again, these were absent.
Our cough reflex is another survival mechanism, which is easy to assess. I opened up a port at the end of Diane’s breathing tube and slipped a long suction catheter, normally used to retrieve secretions, deep into her trachea. Diane made no effort to cough.
Brain death is always associated with a total loss of respiratory function even in the face of the most powerful physiological stimulus to breathe—a defined and much higher than normal level of carbon dioxide in our blood. To avoid hypoxia, we raised the oxygen level in Diane’s blood before removing her from the ventilator then, through a similar suction catheter that was used in the previous test, we ran a flow of one to two litres of oxygen a minute into her breathing tube to keep her oxygen saturations above 90 per cent, all the while paying close attention to see whether she made any respiratory effort as the carbon dioxide level in her blood slowly rose. As time passed the level of carbon dioxide in her blood started to rise. At several points, we measured the partial pressure of carbon dioxide in Diane’s blood to ensure that we reached the level of 60 millimetres of Mercury (mmHg) or 8.5 kilo Pascals (kPa) defined in the guideline. After eight minutes, her carbon dioxide level came back at 75 millimetres of mHg or 10 kPa, well above that threshold. At no stage during that process did Diane make any respiratory effort whatsoever.
I carefully documented the results of those tests and spoke with Diane’s parents. A little while later, again in their presence, we repeated the same set of tests and got the same results. Diane showed no response at all to those tests, which concluded at twenty past midnight—the official time of Diane’s death. That time together with the diagnosis of brain death would later feature on the official record, given to her family the next morning.
Not long after, we had our last formal family meeting, me, Diane’s parents, her stepfather, a grandparent, her sister, a brother, and an uncle and aunt. Diane was dead. My job now was to get the best result for this family—something that in one month, three months, a year, and forever, at the worst, they could live with without regret.
It didn’t take long before they spoke about what Diane would have wanted for herself. She had been a wonderful daughter and, despite the divorce and the difficulties that followed, she loved her parents, as they had loved her. They described her as generous to a fault, always putting others before herself. Although they had never talked about the possibility of something like this occurring and had never spoken about organ donation, it was something her family knew she would want to do. I said nothing and listened. One by one they spoke, looking at each other with tears in their eyes, seemingly united again as a family.
I thanked them. They had made an extremely brave decision. Although Diane was dead and able to be removed from the ventilator, after which her heart would slow and within minutes stop, they elected to prolong this inevitable process. They agreed to keep Diane on the ventilator to allow for a myriad of new tests to be done in order to assess the function of her heart, lungs, liver, kidneys and potentially other transplantable tissues too. This would take many more hours. Despite her youth, the longer that took, the more likely Diane’s body, adrift without its brain, might begin to unwind in strange ways.
We discussed this possibility in some detail, that Diane might need to be actively warmed to prevent her becoming significantly hypothermic, and that she would likely require further boluses of intravenous fluids and drug infusions to support her blood pressure as well as other drugs to correct endocrine abnormalities commonly associated with brain death.
I took particular care to explain a weird and deeply disturbing complication associated with brain death—abnormal movements of the limbs and sometimes the head that can sometimes occur in this setting. These are spinal reflex movements, just like the involuntary knee jerk that occurs after a knock to the patella tendon just below a bent knee.
These so-called spinal reflexes can also be initiated in other muscle groups in our arms and elsewhere but are not spontaneously evident in the presence of a normally functioning nervous system. With the onset of brain death and loss of the normal hierarchy of neurological control mechanisms, these spinal reflex movements can occur spontaneously and become pronounced. They are not signs of life.
Despite explaining the possibility of this in advance, when they occur these movements can be deeply unsettling for families and raise in them renewed hope of a miraculous recovery.
Despite the family’s agreeing to Diane becoming a donor, we also talked about the rare occurrence when something from left field might arise to prevent donation from occurring—a technical issue, an undiagnosed disease in the donor or an unusual problem with the recipients. As rare as this is, it gives me the opportunity to thank them for their willingness to donate, for the journey they have taken to acknowledge what Diane would have wanted, and for the courage to follow through whether donation itself takes place or not. I tell them this is all they can do, they have embraced it wholeheartedly, and I hope that in the future it will bring them strength.
In the meantime, I had phoned the donor coordinator who manages the process of donation, setting in motion the well-oiled wheels of a great system. Diane’s blood was sent for tissue typing. An echo of her heart was done. Measurements and further tests were taken to assess the size and function of the liver, lungs and kidneys. All the while a series of phone calls with other specialists and the donor coordinator took place to help finesse the process.
At the same time, a separate part of the transplant team contacted potential recipients. Some were local, some in far-off places. For them and their families, it is a time of great hope and trepidation. For those waiting for a kidney, life is tough but it is often stable. With this offer comes new problems—a lifetime of drugs to prevent the recipient’s body rejecting the foreign tissue of someone else’s body and other consequences too. But, like it did for my friend’s brother, receiving a new kidney carries the hope of a much more normal life. It is a gift like no other and those lucky enough to receive it profoundly know that. For those waiting for a liver or a heart, organ donation is simply lifesaving and often delay means death.
During this process, most of Diane’s family said their goodbyes but her mum and dad decided to stay to see it through. The donor coordinator, the glue that holds all of this together, arrived first to thank them and then to answer any questions that they might have. An hour or so later, at about 5 a.m., the retrieval team arrived—several surgeons and an anaesthetist. Together we went through the paperwork to ensure all was as it should be and, a little while later, Diane was taken to the operating room. Her parents were exhausted, almost too tired to cry. I was exhausted too. By that stage, it seemed like we had known each other for years, but it had only been a day and a half. We spoke together for the last time, hugged each other—yes, there were a few tears—and then we said our goodbyes.
The next morning, we found out that one kidney went to a patient in a town in the far south of the country. He was just 24 years old and doing so well that the kidney was already making urine! The second kidney stayed closer by and went a man in his fifties—it was the same good news for him too.
Diane’s heart and one lung were transplanted into a nineteen-year-old girl with cystic fibrosis. Although still on a ventilator, she too was doing well.
One lobe of Diane’s liver was transplanted into a three-month-old baby born with an abnormality of the bile ducts. The other went into a 42-year-old mother of three who had quite suddenly developed fulminant liver failure from a viral infection. Both would have been dead in days had their conditions been left untreated, but now they were doing well too. Diane’s family would have heard the same news.
I understand only too well how emotionally draining and all-consuming this whole process can be. It is real beyond description. Each time I go through it, I am totally consumed by it and each time it leaves me completely wrung out. I know this is the same for other ICU specialists too.
As for the families, although I cannot speak for them, I have observed in some an overwhelming desire to know more about the recipients—who can assume a new role, as surrogate family in the minds of the donor family. This carries great risks for all parties, so we actively discourage breaking the confidentiality around this process while still maintaining a duty of care to those families. This will vary from one jurisdiction to another but may take the form of occasional or regular calls to ensure that they are doing ok and, if not, they are offered help.
Every year memorial services are held in the bigger cities to honour and remember those who have passed and those who have given and received. For everyone involved, living has a new meaning.
Each year in New Zealand, on average, forty people will become brain dead and donate organs. A much smaller number of patients with a severe unrecoverable brain injury, who do not develop brain death but die within an hour of them being removed from a ventilator, will do the same. Although each one is a momentous event, in the bigger scheme of things, the demand for organs far outweighs the supply. This is especially so for the fabulous kidney, slowly failing in more and more people as a result of the epidemic of obesity-related diabetes.
From time to time, usually in response to publicity about a single case, politicians come under pressure to increase donor numbers and look to other jurisdictions for ideas. Spain leads the way internationally with 34 deceased donors per million population—3.4 times the rate of donors in New Zealand—according to figures from the International Registry of Organ Donation and Transplantation.
Although different factors impact on these differing donor rates, it is the legal environment, and organisational and cultural issues, that seem to be most important. Spain, Belgium and Portugal have all passed ‘presumed consent’ laws where individuals are automatically considered an organ donor unless they opt out. Other jurisdictions have established donor registers to allow individuals to opt in. Both have their downsides: inaction in an opt-in system can lead to individuals who would want to be a donor not donating. In contrast, inaction in an opt-out system can potentially lead to an individual who does not want to donate becoming a donor, or a family deeply opposed to donation feeling as though the state has stolen the organs of their loved one. In each case, the ramifications for families, also grappling with the tragedy of death, can be disastrous.
Spain’s presumed consent laws have helped improve rates of organ donation, but their success in large part has been attributed to the organisational measures it has implemented. In 1989, Spain established a nationwide transplant coordination network. It helps doctors and transplant coordinators to identify potential donors through better training and education. It also provides real-time advice to treating clinicians.
A similar system has been established in New Zealand through Organ Donation New Zealand, but for strong cultural reasons we require family consent for organ donation to proceed in order to protect the ongoing interests of the surviving family.
Organ donation in circumstances like Diane’s results from a sudden and unexpected catastrophe and therefore something many people have not considered. Despite that, we can and should make our own wishes known about what we might want for ourselves by speaking with family and friends. These are conversations we really ought to have along with those about what matters to us about how we live and how we wish to die. These don’t have to be morbid and sad; on the contrary they are more about life than death. Most of all, they should help us all get the most out of this gift—our one and only precious life.