Who Owns Your Organs When You Die?

Who Owns Your Organs When You Die?

It's not you - it's me. Besides being your favourite pseudo-compassionate breakup line, this is also the answer to the ethical minefield of a question: who owns your organs when you die?

If you pass away tomorrow, your organ donor wishes could go entirely unheard. It's actually your next-of-kin's decision if your corneas, heart, lungs, kidneys, liver, pancreas, and skin are harvested and given to transplant patients... even if you clearly state otherwise on your driver licence.

This "family veto" law is standard practice in many developed nations today. But it raises a little-known ethical dilemma. And it's likely costing lives. Half of donor candidate families veto organ donation here in New Zealand—despite the deceased being willing donors in many cases. So whose choice should it be? And what do ethical philosophers have to say about this?

Bentham's Utilitarianism

As nations, New Zealand and the UK have among the worst donor rates in the developed world, with 12 deceased donations pmp (per million people). The US does a lot better with 26 pmp. But first place goes to Spain, which donates organs at a rate of 40 pmp.

Even so 40 donors per one million people seems pretty low, right? We'll dive into the logistics of organ donation in a moment to see why this is. But first let's take a look at the ethics of the contentious veto dilemma.

If we were to abolish the family veto law, it would value the survival of critically ill people over the feelings of grieving families. In the worst case scenario, families still in shock could be forced to sacrifice the organs of their loved ones against their wishes. Even so, a stranger on the transplant list would get their quality of life back, and often defy death altogether.

But feelings are hard to measure. How do you weigh up the pros and cons of such a law? How do you even enforce it?

The philosopher Jeremy Bentham devised a Utilitarian approach to such ethical dilemmas. He said we should seek the greatest balance of benefits over harms for everyone involved. So his answer would have been to abolish the veto straight up: it's a fair distribution of resources in a life-or-death scenario.

Could it really be that simple? Apparently not. 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 chips away at its moral high ground.

There's another angle we need to consider here, and that's the rights of the deceased. Having a veto law transfers the rights of the dying patient to their family, but it may be on insufficient legal grounds. If it's your body, it should be your decision, regardless of the emotional or religious objections of your 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 organ donation wishes overlooked?

It comes down to informed consent. Wills and DNRs are legally binding documents created with great care and consideration, witnessed by lawyers or doctors. This isn't true for organ donor registration.

In many countries, becoming a donor is a yes-or-no checkbox on a driver licence application, which doesn't constitute informed consent.

Far from trampling your rights, the veto law actually protects you by having your next-of-kin make a fully informed and relevant decision on your behalf.

When Your Body is State-Owned

Time for a story about what happens when things go wrong. In Singapore, the family veto was abolished in 1987 as part of a wider slate of policy updates. The state dictated that all citizens are automatically organ donors unless they actively opt-out of the system. What's more, there's no family veto to call upon.

This sounds like a sensible solution if we're primarily focused on saving lives. 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 the society as a whole is divided in its belief systems? Are children and mentally disabled people automatically considered donors, or is it okay 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 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.

Unfortunately for them, Hua was an ideal donor candidate in his condition. There's a small and unlikely window for organ retrieval: it must happen while patients are still technically alive, but usually supported by machines in the ICU.

When you die, your organs no longer receive a blood supply and become useless for transplant. They must be harvested while you're alive, making organ retrieval surgery the technical cause of death.

Few people would be able to seal the uncertain fate of a loved one for the benefit of a stranger, and in such a scenario you can see the value of the family veto. Except in Singapore, there was no veto.

Sim Tee Hua had never opted-out of organ donation, and the ensuing scene was a dystopian nightmare. By law, police and hospital security restrained the family while medical staff took Hua into surgery to retrieve his organs. In doing so, they instrumentalised Sim Tee Hua's death and the family were left feeling horrifically 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 designed to prolong and value human life. The media coverage was extensive, leading to a public outcry and a 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 generally pretty good at respecting individuals' 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, offering some meaning to the death of their loved one.

Neuroscientists have linked altruistic acts to social bonding and attachment, and signing off on organ donation may help create a sense of peace and closure around the death.

That said, are there better ways to encourage organ donation across the population? Something to help reduce the number of families who veto donation at the critical moment?

Lessons From Spain

As the 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 also act as Transplant Coordinators. Since most cadaver donors come from the ICU—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, also known as presumed consent, unless you declare otherwise. Unlike Singapore, it enforces the family veto. So what drives the Spanish donor rate: the family veto, transplant coordinators, or the hard-line default 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 sufficient organ supply to honour the family veto. In contrast to Singapore, it has the best of both worlds. And there are no compelled harvesting horror stories to spook the nation as a whole.

Most critically, at the front line, Transplant Coordinators excel at respectfully nudging families toward donation at a time of great stress, confusion, and uncertainty.

By comparison, less than half of New Zealand health professionals 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 among ICU nurses. While 4 out of 5 health professionals are pro-donation, they fear putting further stress on families in their darkest hour. And that fear is where it's all breaking down.

How to Increase Donor Rates

Despite the title of this post, organ donation is not about the ownership of body parts. It's about saving and enhancing lives. If we can balance the ethics in the process that's a massive bonus.

Logistically, lawmakers can get to work in several practical ways:

  • Run an official donor register. Coordinating donors through driver's licence applications leaves millions of non-drivers' donor wishes unknown. This is an opportunity to collect some low hanging fruit. What's more, a formal register creates the opportunity to raise public awareness, create properly informed consent, and ensure our families are clear about our wishes when we die.
  • Increase public awareness. There's a financial case for governments to invest in promoting organ donation. More donors means fewer patients on transplant waiting lists, which in turn cuts significant healthcare costs. 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.
  • Train Transplant Coordinators. Without training, hospital staff have a hard time approaching grieving families to talk about organ retrieval surgery. As long as the family veto is in place, your next-of-kin have to sign-off on the donor surgery you already agreed to have, making for a double opt-in system. We can better navigate this hurdle with more training and support at the organisational level.
  • Keep the family veto. As Sim Tee Hua's case revealed, there are times when the lack of a veto is catastrophic for the family. These may be exceptions and not the rule, but an extra layer of protection is needed for extreme cases, not to mention the subsequent media coverage which hurts national donor rates. Singapore has shown us this in practice. Besides, the family veto appears to stand on solid moral ground, provides informed consent, compassion for the grieving family, and the sense of altruism implied by the phrase organ donation as opposed to organ requisition.

Final Thoughts

Organ donation turns out to be an ethical and logistical minefield, perhaps with no single perfect solution. There are plenty more personal, political, religious, and philosophical perspectives not explored here.

Simply opening up the conversation with your loved ones can help reduce the problem and save more lives overall. This is something we can all do at the individual level today, while governments take a leaf out of Spain's book in setting the standard for the most lives saved with organ donation.

Becky Casale Bio

ABOUT THE AUTHOR: Becky Casale is the creator of Science Me. She's studying for a BSc and raising two small humans so parts of her DNA can live on a bit longer.