Organ donation is important. When a person dies in a way that leaves them brain dead but their other organs still viable, such as an intracranial haemorrhage in an intensive care unit, their organs can be transplanted to save others’ lives in a way nothing else can. Only a few organs, kidneys for example, can be donated by live donors. But others, like lungs and hearts, can only be given posthumously.

This is something most of us will already know, but it’s something else entirely for it to have saved the life of someone you know. I want to start this article by telling you a story.

Poppy McKay is a family friend. She’s 24 years old, and she is probably alive today because of an organ donor who is sadly not.

She was diagnosed at birth with cystic fibrosis, an incurable genetic disease that primarily affects her lungs and digestive system. For her whole life, she’d been in and out of hospital, having to undergo daily treatment.

In early 2012, most of her treatment was stopped as it was no longer being effective. The only option left to her, she was told, was to be assessed for a lung transplant. She was put on the active list later that year. She spent her 21st birthday on the list, and by the end of the year could barely walk up the stairs at home. Her lungs were so weak she wasn’t even able to blow into the machine to measure their function.

But then the phone rang, and the transplant coordinator said she should go to the hospital immediately because they had a pair of lungs for her. After a long operation starting in the early hours in the morning, she came out of the operating theatre with a new pair of lungs.

Since the transplant, she progressed from breathing with help from a machine, to breathing on her own, to walking with a frame, and then without one. When I see her now, you could tell me she’d never been sick a day in her life and if I didn’t know better I might believe you.

Organ donations like this are very special. They can save the lives of multiple people, but only at the cost of another life. I think it says a lot about a person, and their family, when they allow this to be done.

Are you an organ donor? When I ask that question, do you think to check your driver licence? That’s the closest thing New Zealand has to recording a person’s status as an organ donor. When you apply for a driver licence, as part of the process you are asked this question:

Would you be willing to donate organs in the event of your death?

New Zealand Transport Agency | Organ and tissue donation

You can’t apply for a licence unless you tick either “Yes” or “No” in response to this. If you tick “Yes” then the word “DONOR” will be printed on your licence. Either way, you’ll very likely consider the question answered and not worry about it for most of the rest of your life, and you might feel justified in doing that. But you’d be wrong.

When I was applying for my licence a few years ago, I noticed this text on the NZTA website (the emphasis is mine):

Ticking the ‘Yes’ box on your driver licence form only means that you have indicated your wish to be identified as an organ and tissue donor. It does not automatically mean that your organs or tissues will be donated in the event of your death. In practice, your family will always be asked for their agreement to organ and tissue donation.

If your family knows what your wishes are in regard to donation, they will be more likely to follow them through in the event of your death. Having your wishes displayed on your driver licence is just one way of making them known to your family. You should also discuss your decision with them.

New Zealand Transport Agency | Organ and tissue donation

I emailed Organ Donation New Zealand about this in 2012, to ask if there was anything I could do that would guarantee that my wish to be an organ donor would be respected if I were ever in a situation where I was a potential organ donor. I was told that my family and friends would be asked about my wishes and if they would agree to consent. I emailed them again last week and they confirmed that this answer is still true today.

I’m lucky in that my family and I are on the same page about organ donation. Having spoken to them about it recently, I can be entirely confident that they would respect my wish to be an organ donor if they ever had to. I’m sure not everyone is in the same position, although until recently I could only speculate as to how common that would be.

Last week, Andy Tookey from the organ donation lobby group GiveLife released a press release in response to information released to him under the Official Information Act. Mr Tookey was kind enough to send me the documents released to him, and gave me permission to publish them here.

The document includes a copy of the most recent audit of potential donor deaths in New Zealand. One part of this document in particular was very interesting to me, and I’ve duplicated it here:

It’s that last figure in particular which I find interesting. In all the cases where organ donation was formally discussed with the family of a potential organ donor in 2015, they only agreed to it 39% of the time. The reasons the families refused the remaining 61% of the time weren’t recorded, and I could imagine in some cases they might have known their loved one did not want to be an organ donor.

For comparison, I’ve seen several figures of the proportion of NZ driver licences with “DONOR” printed on them, which all centre at around 50%*. Given the discrepancy between this and the proportion of families that agreed, it seems likely at least some of the time the family would have acted against their loved one’s wishes and prevented them from being an organ donor.

To help make sense of all this I spoke to Associate Professor Colin Gavaghan, an expert in medical law and ethics at Otago University. I asked him about what the law says about how organ donation handles informed consent, what problems he sees with the current system, and what could change so someone could be assured that their wish to be an organ donor could be respected even if their family disagrees. Here’s what he told me:

The use of organs in NZ is covered by the Human Tissue Act 2008. The Act has a number of stated purposes, the first of which is to ensure that the collection of human tissue occurs only with proper recognition of, and respect for:

• the autonomy and dignity of the donor;
• the cultural and spiritual needs, values, and beliefs of the deceased’s immediate family;
• the cultural, ethical, and spiritual implications of the collection or use of human tissue; and
• the public good associated with collection or use of human tissue.

Straight away, the potential for conflict between some of those objectives becomes obvious. How are medical staff to balance the autonomous wishes of the deceased with the beliefs of their immediate family, if those are not aligned? How is the public good of organ donation to be balanced with the “cultural, ethical and spiritual” values of those who don’t agree with organ donation?

Luckily, the Act makes it clear that those objectives are not equally weighted. As the Ministry of Health point out “The Act makes informed consent the fundamental principle underpinning the lawful collection and use of human tissue from deceased people.” [http://www.health.govt.nz/our-work/regulation-health-and-disability-system/human-tissue-act/about-human-tissue-act]

What that means is that if you have documented your wishes before you die, those wishes should be the most important determinant of what happens after death. No other authority is needed.

That’s the theory, anyway. In reality, there are a few factors that make things a bit more complicated.

1. The Act doesn’t require doctors to take your organs. Your consent authorises the salvaging of your organs, but it doesn’t make it compulsory for anyone to do so. In some ways, this discretion seems sensible. We wouldn’t, I assume, want to force doctors to harvest organs that are likely to be unsuitable for transplant. There may also be cases where evidence arises that the deceased may have changed their mind after indicating their consent. More controversially, the MoH notes that ‘the immediate family may be distressed by a decision to proceed with donation.’ How much weight should be given to that is contentious, and I’ll come back to it in a minute.

2. By far the most common way for New Zealanders to record their wishes about organ donation is via their driving licenses. Both the Act and the MoH make it clear, however, that this won’t constitute “informed consent” for legal purposes.

I can see why this would be the case. Unlike the UK’s donor card, for instance, the NZ driving license doesn’t allow people to specify which organs they would be willing to donate. (I’ve never really understood what would motivate someone to agree to donate all of their organs, but not, say, their pancreas. But ultimately, it’s their choice.)

This is problematic for a couple of reasons. One is my suspicion that most people who fill out that part of the license actually do so believing they are giving legally valid consent. If so, that’s just bad in itself; if we value autonomy (as the Act claims to) then it seems generally wrong when people do things under false beliefs. But it might also be bad in that it discourages them from taking other steps that might actually be legally significant. Why bother if you think the info on your driving license is enough?

Even if people were to recognise that the driving license doesn’t amount to “informed consent”, it isn’t entirely obvious what they could do instead. Unlike the UK and Australia, NZ doesn’t have a register where people can record their wishes. The Act provides that one could be set up, but thus far, there has been no political will to establish one.

I’m not sure whether establishing a register would be worthwhile in terms of increasing the supply of donor organs. It’s possible that it would cost too much to set up and run, and divert too much money from more worthwhile initiatives. But there may be cheaper options available that could be almost as effective.

Although they were rendered largely redundant by the Register, I still have my UK Donor Card, a wallet-sized statement of willingness to donate my organs after I die. It contains simple tick boxes to indicate views regarding specific organs.

I can’t think of any reason why something similar couldn’t be distributed in NZ, and be so constructed as to contain enough information to constitute “informed consent”.

3. The Act makes it clear that, where valid consent is obtained from the deceased, no-one else should be able to override that. As the MoH says: “The framework does not allow others to legally veto an individual’s consent”.

In practice, however, we know that immediate family (and sometimes more distant family) are routinely asked to make the decision. Unfortunately, this doesn’t just happen in NZ, but in the UK as well. It happens even in situations where the relevant law has made it clear it isn’t required.

There can be good reasons to consult the family of the deceased. As the UK NHS explains, “In the event of your death, the person closest to you (usually your next of kin) will be asked to confirm that you hadn’t changed your mind before your death.” (http://www.nhs.uk/conditions/organ-donation/Pages/Donationprocess.aspx)

A lot can depend, though, on how the approach is made and the questions asked. There’s a difference between asking the family if the deceased changed their mind, and asking them for their own consent. In the UK, where it’s also worryingly common for families to override consent in this situations (500 recorded instances since 2010) various strategies are being tried out to reduce this phenomenon.

For instance, the relatives of the deceased can be provided with an information sheet, gently but clearly explaining that the deceased has consented to organ donation, and that this will be what happens unless they know of a good reason why it should not. This might not sound very different to what happens at the moment, but the hope is that it will make it clearer that it isn’t up to the family to decide what should happen, but rather, to inform the medical staff of any relevant information that they may not know.

What of the situation where the bereaved relatives are genuinely distraught at the prospect of the organs being taken? There’s no clear answer here, but my own view is that the wishes of the deceased, and the value of the potential donation, should still carry greater weight.

There are 3 reasons why I say this. First, we don’t give that sort of weight to family wishes in any other circumstances. If I refuse life-saving treatment, that refusal has to be honoured, regardless of how much my family might want me kept alive. Likewise, I can’t imagine any competent adult having their consent to treatment being invalidated on the basis that their family don’t wish them to have it.

We have, as a society, accepted the primacy of individual autonomy in just about every other medical situation. It isn’t clear why organ donation should be the exception.

Second, it isn’t clear to me that immediately bereaved people are generally in a state of mind to make properly reflective choices about such matters. Certainly, it doesn’t seem likely that they will make a better decision (in the sense of being a balanced one) than that made by the deceased themself when they set down their wishes in advance, presumably in the cold light of day.

Third – and this is important – if really we’re going to start down the road of overruling individual autonomy on the basis of the interests of other people, then let’s consider all of those interests – not only those of the immediate family, but those of the potential donor recipients. And their families. Of course, the medical staff who are seeking consent to take organs won’t have to face those people, and explain to them that – while a perfectly good organ was available – someone has just refused to let them have it.

To summarise, I’d favour 2 changes:

1. A means should be made available for people to express their wishes about organ donation in a manner that will be regarded as legally valid consent. This could be via a register, or a donor card, or something else. This should replace the section of the driving license, which has substantial potential to be misleading with regard to its legal status.
2. Where legally valid consent from the deceased is available, the practice of routinely seeking consent from what will frequently be traumatised, overwrought bereaved relatives should end. Instead, relatives should approached with a sensitive statement to the effect that the deceased has consented to their organs being taken, and that this is what will happen unless the relatives know of any specific reason why it should not. Of course, the possibility remains that certain families with very strong anti-donation views will lie about this, but it’s hard to imagine that being a common occurence.

Associate Professor Colin Gavaghan

I also asked Poppy, as someone who has personally been involved with organ donation, what her thoughts on this issue were:

I have an issue with people not being able to be in “control” of the last wish they could potentially have by, when unable to communicate with them, their families or loved ones can say no to organ donation.

A donor registry could be a good option. I haven’t done a lot of research around it but know it’s successful in some countries. If anything, it brings a hell of a lot more awareness, and even if we still had the same law as the driver’s license one, you would think seeing as a much more informed decision had been made to register themselves as donors, the families may not oppose it as often.

Having been in the position of needing a transplant, I obviously believe that everyone who can be a donor, should be a donor. Everyone who wants to be a donor, should be allowed to keep their wishes.

However, I have never been on the other side. Having to already deal with the fact a loved one is going to die, some people may find it too hard to then have their body “chopped” up and not be buried/cremated whole. I believe that if someone has expressed strongly enough their feelings of being a donor, their loved ones would want to honour it. More awareness needed?

My main advice for people who want to be organ donors and their families is to “have the conversation”. Make sure those who will be responsible to make the decision for you if you’re ever in that situation knows your wishes and how strongly you feel about it. Research success stories of organ donation/transplant and see how life changing it can be for up to 8 people per donor, not only life changing for them but for their families and friends.

Poppy McKay

The idea of a register is one that Andy Tookey from GiveLife has also been pushing for. In my opinion, it seems the current system is simply not robust enough. It fails to capture people without a driver licence, for example, and also isn’t enough to constitute informed consent. I don’t know if a register is the right way forward, but I do think it seems like a good suggestion and I hope it will at least be considered. There should be a way for people to be assured that their wishes regarding organ donation will be respected after they’ve died.

So, what should you take away from this article? If nothing else, remember this:

• Your driver licence saying you’re an organ donor doesn’t mean you would be if you ever could be
• In order for you to be an organ donor, it is important that your family understands your wishes, and that you’re on the same page. Talk to them about it.

I would also like to give my sincere thanks to Colin and Poppy for their contributions to this article. Thank you both!

* I’ve seen figures of 48.8%, 49%, and 52% over the past few days, but I haven’t found a primary source for any of them. I’ve asked NZTA for the information via the Official Information Act, but I expect it will take them a while to give it to me. Here’s a link to the OIA request on FYI.org.nz – Organ donor preference on driver licences