It’s not you – it’s me.
Besides being your favourite pseudo-compassionate break-up line, this is also the answer to the ominous-sounding question: who owns your organs when you die?
If your partner passes away before you, his or her organ donor wishes can go entirely unheard. As the next of kin, it’s your decision if critical organs like their corneas, heart, lungs, kidneys, liver, pancreas and skin are harvested for transplant patients.
This familial fallback is standard practice here in New Zealand and many other nations. But it raises some surprising ethical dilemmas. What’s more, half of donor candidate families vetoed organ donation here last year – despite the deceased being willing donors in many cases – and this raises a big question mark over the long held policy. Whose choice is it anyway?
And what do ethical philosophers have to say about this?
Seeking Benefits Over Harm
New Zealand has among the worst donor rates in the developed world, with 12 deceased donations pmp (per million people). Spain has the highest rate at 40 pmp, demonstrating the theoretical potential to more than treble our performance. The US, by comparison, sits at 26 pmp and the UK at 12 pmp. (To understand why all of these numbers are just handfuls in the millions, we’ll examine the logistics of organ donation later.) First, what’s the most ethical way to approach organ donation?
The ethical case for abolishing the family veto law hinges on valuing the survival of critically ill people over the feelings of grieving families. Here’s the worst case scenario:
- A family in shock is forced to sacrifice the organs of their loved one (if that was the wish of the deceased);
- If the deceased wasn’t a registered organ donor, no-one is committed to harvesting anything;
- A transplant recipient gets their quality of life back, and often defies death altogether.
The philosopher Jeremy Bentham took a utilitarian approach to such ethical dilemmas. He sought the greatest balance of benefits over harms for everyone involved. It’s a fair distribution of resources in a life-or-death scenario, so how can we argue with that?
It sounds like how a computer would solve the problem. Perhaps we could even create an algorithm to quantify the feelings of everyone involved and calculate the answer – to harvest or not to harvest.
And there’s the rub. Some ethicists decry the utilitarian response as being disconnected from humanity and altruism. Despite objectively pursuing the greater good, utilitarianism lacks subjectivity and compassion; something that uncomfortably chips away at its moral high ground.
Is It Legal?
There’s another angle we need to consider. Having a veto law transfers the rights of the dying patient to their family on insufficient legal grounds. If it’s your body, it should be your decision, regardless of the emotional or religious objections of your grieving family. What gives them the right to overrule you?
Consider official end-of-life legislature, like a legal will or do-not-resuscitate order (DNR). These are put in place while we’re alive and well, and they hold firm when we die. There’s no precedent for the next-of-kin to overrule us. So why are our long-held wishes overlooked when it comes to organ donation?
It comes down to informed consent. Wills and DNRs are legally binding documents created with great care and consideration, witnessed by lawyers or doctors.
The same can’t be said for organ donor registration. Here – and in many other countries – becoming an organ donor is a yes-or-no check box on a driver’s licence application. Supporters of the veto argue that this doesn’t constitute informed consent and, far from trampling your rights, it protects you by having your next-of-kin make a fully informed and relevant decision on your behalf.
In Singapore, the family veto was abolished years ago as part of a wider slate of policy updates. In 1987, the state dictated that all citizens are automatically organ donors unless they actively opt-out of the system. You better be pro-active if you want out of the deal, because there’s no family fallback to rule you out.
Seems like a sensible solution. However, on closer inspection it raises many more ethical conundrums. If you opt-out of being a donor, does that mean you shouldn’t be eligible to receive an organ transplant yourself? What are the implications of refusing to be a donor on religious grounds when society as a whole is divided in its belief systems? Are children and mentally disabled people automatically considered donors, or is it ethical to let caregivers decide on their behalf?
Despite its hard-line approach, Singapore’s donor rate is terrible: just 8 donations pmp. What seems like a fair distribution system has become a lose-lose situation. Transplant patients are left dying on waiting lists, and grieving families suffer when their desperate objections to organ harvesting are ignored.
Take one well-publicised example. After 43-year-old Sim Tee Hua suffered a stroke, he lay on life support surrounded by his family. Doctors concluded there was no chance of recovery, but his family wanted more time in the hope of a miracle. Hua was an ideal donor candidate and there were transplant patients ready and waiting for life-saving operations.
There’s a small and unlikely window for organ retrieval. The decision to donate is finalised while patients are still technically alive, but supported by machines in the ICU. Once they die, blood supply to the organs quickly dissipates and they become useless for transplant. The act of organ retrieval is the technical cause of death.
Few people would be able to seal the fate of a loved one for the benefit of strangers, and in such a scenario you can see the value of the family veto. Except in Singapore, there was none.
Sim Tee Hua had never opted-out of organ donation. So by law, police and hospital security restrained the family while medical staff took him into surgery to retrieve his organs. In doing so, they instrumentalised his death and the family were left feeling cheated by the state and with further trauma to process.
Such accounts give us a disturbing glimpse of what can go wrong within a system originally designed to prolong and value human life. The media coverage was extensive, leading to a public outcry and a subsequent further drop in national donor rates. Abolishing the veto was a grave error in this instance.
It’s Called Organ Donation, Not Organ Requisition
Just because we have the medical technology to allow for organ donation, does that mean everyone should be on board with it? In the developed world, the government is (usually) pretty good at respecting individual’s beliefs. Opting-out of a life saving system might make you selfish, but it might also mean we have a healthy, free society.
Meanwhile, the family veto law affords grieving families to commit an act of profound altruism. It might give some meaning to the death of their loved one. Neuroscientists have linked altruistic acts to social bonding and attachment. So perhaps signing off on organ donation creates a sense of peace and closure which contrasts with the violation of compelled organ harvesting.
That said, are there better ways to encourage organ donation across the population, to reduce the impact of families vetoing donation at the critical moment? As it turns out, there are.
Spain Does It Best
As a champion of organ donation, Spain set the global standard in the 1990s. It achieved this by shifting its focus to the organisational level. The government trained intensive care specialists to be transplant coordinators. Since most cadaver donors come from the intensive care unit – brain-dead, yet ventilated – the intimate involvement of specialists in coordinating donation has been effective at the front line.
Like Singapore and many other European countries, Spain runs an opt-out system of presumed consent, unless you declare otherwise. Unlike Singapore, it also enforces the family veto. So what drives the Spanish donor rate: the veto, transplant coordinators or the hard-line legislation of state-owned body parts?
Researchers estimate opt-out systems generate 25-30% higher donor rates, although part of the effect is indirect. In practice, presumed consent means there’s better public awareness of the need and responsibility for organ donation, and this affords Spain a sufficient organ supply to continue to honour the family veto. Unlike Singapore, it has the best of both worlds. And there are no organ requisition horror stories where the family are left traumatised.
At the front line, Spanish transplant coordinators also excel at respectfully nudging families toward donation at a time of great stress, confusion and uncertainty. By comparison – and somewhat alarmingly – less than half of New Zealand health professionals even raised the topic of organ donation with candidate families last year. What’s holding them back? Aren’t they, of all people, aware of the organ shortage?
It’s not a unique problem. UK researchers found the same issue. While 4 out of 5 health professionals are pro-donation, it turns out they fear putting further stress on families in their darkest hour. And that’s where it’s all breaking down.
Despite the title of this post, organ donation is not about ownership of body parts. It’s about saving and enhancing lives. If we can balance the ethics in the process then that’s a massive bonus.
Logistically, New Zealand – and many other countries – can get to work in several ways:
- Run an official donor register. Coordinating donors through driver’s licence applications just leaves millions of non-drivers’ donor wishes unknown. This is an opportunity to collect some low hanging fruit. What’s more, a separate formal register creates the opportunity to raise public awareness, create properly informed consent, and ensure families are clear about our wishes.
- Train transplant coordinators. Without appropriate training, hospital staff have a hard time approaching grieving families to approach retrieval surgery. Training specialists for this role is a good approach to handling this sensitive situation. As long as the family veto is in place, it requires the family to further sign-off on surgery you already agreed to have, making for a double opt-in system. We can better navigate this with extra education and support at the critical time.
- Increase public awareness. There’s a rational case for investing government money into advertising campaigns to increase national donor rates. More donors means fewer patients on transplant waiting lists. The kidney failure patient no longer has to spend 12 hours per week receiving dialysis, and after the cost of the once-off surgery, is significantly less of a burden on the healthcare system. The cost of government support through living benefits falls too.
- Keep the family veto. As Sim Tee Hua’s case revealed, there are times when lack of a veto is catastrophic for the family. Each case is likely to be different and sometimes, an extra layer of protection for the grieving family is vital. What’s more, Singapore has shown us that abolishing the veto doesn’t improve donor rates. Media coverage and public opinion are too sensitive to exceptional cases. Ethically, the veto stands on solid moral ground, provides informed consent, compassion for the grieving family, and the altruism implied by the phrase organ donation.
Organ donation turns out to be an ethical and logistical minefield with no single perfect solution. And there are plenty more personal, political, religious, and philosophical perspectives not explored here. Simply opening up the conversation with loved ones can help contribute to the final solution; one that can be installed worldwide once we figure out what it is. For now, governments can take a leaf out of Spain’s book in setting the standard for most lives saved with organ donation.