Who Owns Your Organs When You Die?
The Family Veto
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 stated otherwise on your driver's licence.
The Family Veto is standard practice in many developed nations. But it raises a little-known ethical dilemma that continues to cost lives.
When the opportunity for organ donation arises, half of all families say no to organ donation here in New Zealand. Often, their dying loved ones were willing donors. Is this ethical? What are the overall costs? And what does ethical philosophy have to say about this?
As nations, New Zealand and the UK have among the worst donor rates in the developed world, with 12 deceased donations per million people. The US does a lot better with 26 per million. But first place goes to Spain, which donates organs at a rate of 40 per million.
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 family veto issue.
The Philosophy of Organ Donation
The philosophy of utilitarianism says that when we're confronted with an ethical dilemma, we should weigh it up in terms of overall utility. In other words, seek the greatest balance of benefits over harms for everyone involved. Utilitarianism would have us abolish the family veto straight up, as it's a fair distribution of resources in a life-or-death scenario.
But some ethicists decry this response. Some families feel that harvesting their loved ones organs is itself totally disconnected from humanity. It's an objective solution that lacks subjectivity and compassion; a fact that chips away at its moral high ground.
There's a second dilemma here. The law transfers your rights to your family, conflicting with the anti-vax mantra: My Body, My Decision. Consider other end-of-life legislature, like legal wills and do-not-resuscitate orders (DNRs). We put these in place when we're alive and they hold firm when we die. There's no precedent for our next-of-kin to overrule us. How is it that our organ donation wishes can be dashed so readily?
The tangle here comes down to informed consent. Wills and DNRs are legally binding documents, created with great care and consideration, and 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 your driver's licence application, which is a far cry from informed consent.
Instead of trampling your rights, the family veto was set up to protect you, enabling your next-of-kin to make a fully informed decision on your behalf. But what new information could they have at your deathbed that you lacked in life?
The Worst Case Scenario
Time for a story about what happens when donor laws go horribly wrong.
In Singapore, the family veto was abolished in 1987, along with a new dictate that all citizens are automatically organ donors unless they actively opt-out of the system.
In 2007, when 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.
But Hua hadn't opted out from organ donation, and his condition made him an ideal donor candidate.
There's a small and unlikely window for organ retrieval: it must happen while the patient is still alive, usually supported by machines in the ICU.
When you die, your organs no longer receive a blood supply and become ineligible for transplant. So they must be harvested within a critical window that makes organ retrieval surgery 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 the value of the family veto becomes clearer. Except in Singapore, there was no family veto.
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, thereby instrumentalising his death.
The family were left with two traumas to process, while feeling horrifically abused by the state.
Such accounts give us a disturbing glimpse of what can go wrong in a system geared to value human life. The media coverage of Sim Tee Hua was extensive, leading to a public outcry and a drop in national donor rates.
Today, Singapore's donor rate is terrible: just 8 donations per million. What set out to be a fair distribution system has become a lose-lose situation. Transplant patients are still dying on waiting lists, and grieving families still suffer when their feelings and objections are ignored.
Singapore's auto opt-in system also raises more ethical quandaries. If you opt-out of being a donor, does that mean you shouldn't be eligible to receive an organ transplant yourself?
What if you opt-out on religious grounds? Should children and mentally disabled people be automatic donors? Should their caregivers be allowed to opt-out on their behalf?
The Value of Altruism
If we have the technology to perform organ transplants, does that mean everyone should be on board with it? In the developed world, the government treads a fine line when it comes to respecting our individual beliefs. Opting-out of a life-saving system might make you selfish, but it might also mean we have a healthy, free society.
There's also something to be said for altruism: self-sacrifice for the benefit of someone else.
Altruistic acts are correlated with social bonding and attachment. In signing off on organ donation, your next-of-kin can gain a sense of peace and closure during the grief process.
By affording them this act of profound generosity, your next-of-kin can find meaning in the face of death. It's a silver lining that someone, somewhere is enduring significantly less suffering as a result of your tragedy.
But this might be the last thought on our minds in the midst of shock and grief. So how do we broach the topic at the critical moment?
How Spain Does It Best
With the highest rates of organ donation in the world, Spain set the global standard in the 1990s. Like Singapore, Spain runs a system of presumed consent, with the option to opt out. But unlike Singapore, it also has a family veto.
Presumed consent raises donor rates by an estimated 25-30% both directly and indirectly. It means there's more public awareness of the need for organ donors, and sends the message that people are in this together. It also affords Spain sufficient organ supply to honour the family veto and avoid horror stories that spook the nation.
What's more, the Spanish government put Transplant Coordinators at the front line. Donor candidates most often come from the ICU, so intensive care specialists were trained up to have an intimate involvement in the decision-making process.
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 said they raised the topic of organ donation with candidate families last year. The same problem occurred in the UK. While 4 out of 5 health professionals are pro-donation, they fear putting further stress on families in their darkest hour. And that's where it all breaks down.
How to Increase Organ Donor Rates
Logistically, lawmakers can get to work raising donor rates in three ways:
1. Start an Official Donor Register
Right now, we log our donor status our driver's licence, which leaves millions of non-drivers out of the equation. This is low hanging fruit. As for the issue of informed consent, let's do it properly. Lay out all the emotional and practical outcomes of organ donation and let people decide for themselves before making a firm commitment. If we ever become eligible for organ donation, our families will know we've thought it through and will be less likely to veto it.
2. Invest in Public Awareness Campaigns
There's a clear financial case for governments to invest in promoting organ donation. Patients on transplant waiting lists incur significant healthcare costs, as well as increasing patient loads on medical staff. Take kidney failure for example: the financial burden of ongoing dialysis and living subsidies stack up far more than one-off transplant surgery.
3. Train Transplant Coordinators
Surveys show many hospital staff have a hard time approaching grieving families to talk about organ donation. And when they miss the critical window, they not only deny transplant patients their chance for a normal life, they also deny families a potentially healing act of altruism. Teaching the specialist skills will help more healthcare workers feel able to step in and raise donor rates at the key organisational level.
Organ donation is an ethical and logistical minefield, perhaps with no single perfect solution. There are plenty more personal, political, religious, and philosophical perspectives to consider.
Opening up the conversation with your loved ones can help ease a difficult decision and save lives. This is something we can all do today, while our governments take a leaf out of Spain's book and get as many people as possible on team donor. We might just need it ourselves one day.