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 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.

The family fall-back is standard practice here in New Zealand and many other nations. But it raises some surprising ethical dilemmas I want to explore today.

What's more, the policy might be costing lives without cause. Half of donor candidate families vetoed organ donation here last year—despite the deceased being willing donors in many cases. Whose choice is it anyway?

And what do ethical philosophers have to say about this?

Maximum Benefits vs Minimum Harms

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 though, what's the most ethical way to approach the veto dilemma?

The 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. 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, 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 For Your Family to Overrule Your Wishes?

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.

When Your Body is State-Owned by Default

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.

And you'd 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 if we're 100% 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 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 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 (medically-speaking) 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. It must happen while patients are still technically alive, but usually supported by machines in the ICU. Once they die, blood supply to the organs ceases and they become useless for transplant. As a result, organ retrieval surgery is the technical cause of death.

Few people would be able to seal the 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 none.

Sim Tee Hua had never opted-out of organ donation. And so the ensuing scene was some dystopian nightmare. 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 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 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, 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 creates a sense of peace and closure.

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?

As it turns out, there are.

Let's Take Lessons From Spain

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 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 also enforces the family veto.

So what drives the Spanish donor rate: the family 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 compelled harvesting horror stories to spook the nation as a whole.

Most critically, at the front line, Spanish Transplant Coordinators 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 among ICU nurses. 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.

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 then that's a massive bonus.

Logistically, New Zealand—and many other countries—can get to work in several practical ways right now:

  • 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 families are clear about our wishes when we die.
  • Increase public awareness. There's a compelling financial case for governments to invest in advertising and promote organ donation. More donors means fewer patients on transplant waiting lists, which in turn cuts significant 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 appropriate 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, the next-of-kin are required to further sign-off on surgery you already agreed to have, making for a double opt-in system. We can better navigate this hurdle with extra education and support at the organisational level.
  • Keep the family veto. As Sim Tee Hua's case revealed, there are times when lack of a veto is catastrophic for the family. These may be exceptions and not the rule, but an extra layer of protection is still necessary for extreme cases—and the inevitable 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.

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 loved ones can help lessen 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 most lives saved with organ donation.

Becky Casale Bio

ABOUT THE AUTHOR: Becky Casale is a science freak and a writer who pooped out Science Me. She is studying for a BSc and writing her first sci-fi novel.