On the 13th, the government recently withdrew several of its own Members’ bills, with no guarantee their replacements wouldn’t be Opposition bills, (luck was with Labour and NZ First backbenchers, however, and those two parties won all three new bill drawings) in order to advance the End of Life Choice Bill up the members ballot. This means we need to have a serious discussion both about the moralities and practicalities of euthanasia in New Zealand, and I think this is a reasonable issue to revisit, and probably one of the best things ACT in its modern, post-Banks incarnation has done, actually acting like the Liberal right-wing party it claims to be, and being permissive on social reforms.
That said, despite my usually strident stance as a liberal and champion of reform on social policy, this is not a Bill without complications, and this is an issue that in my opinion even supporters should be wary of. This is one of the few bills where I have actually listened to National Party concerns in the debate and actually said to most (but naturally, not all) “actually, these are valid dangers we need to be careful of in writing a Bill like this, and they might arguably have a bit of a point even if they’re taking it too far.” That doesn’t stop me from thinking that cautiously providing people in suffering and near the end of their life or with a terminal condition with a way to end their life with diginity is a good idea, it just makes me think this bill needs dramatic rewrites before it’s an acceptable starting point.
I’m going to do a quick rundown of what the bill does. And by quick, I mean it will be quick for analyzing a Bill that does anything more than a quick fix, so strap in, we’re heading past 2,000 words.
Eligibility and general problems
To even be eligible, people must be:
All of these are, with the possible exception of being over 18, necessary requirements of a reasonable assisted dying law. And the over 18 requirement is absolutely forgivable for a first-shot at this issue, as arguably allowing younger people assistance with the permission of their guardians is an issue that can be left until after the law is reviewed, and would likely need additional caution and/or safeguards beyond what’s in this Bill, because we should probably want to see how the bill works in New Zealand before we consider if it needs to allow for younger people in these situations to have a process to make a decision with the permission of their legal guardian(s). We could also argue with a six-month prognosis, but this does seem a reasonable point to open up the decision given the process seems to be quite lengthy, and sometimes prognoses are optimistic, so I hope those parts are going to remain uncontroversial.
The age restriction is intended to prevent young people taking this option before they’ve had a reasonable chance to develop. The bill definitely prevents large-scale death tourism by locking out non-residents, and prevents those who are mentally not competent to make this decision from being eligible. It may not prevent all death tourism, however, and it may increase immigration requests for, say, Australians who would like to end their lives, or other nearby countries with no law allowing this. The fact that we have laws around not necessarily accepting immigrants who are already sick won’t always stop people applying.
These requirements may not be is sufficiently broad in preventing bad outcomes. Where are they lacking?
Well, there is no requirement that the person’s reason for seeking assisted dying must be related to the effects of their condition, just that they have the condition and find their suffering intolerable, so arguably people who happen to be suffering and have a degenerative condition, but have other reasons to want to die, such as depression, could be said to qualify under the bill. (depression for reasons not caused by the patient’s condition is not usually a loss of capacity to understand, it simply influences decisions in ways that may be self-destructive or harmful, so arguably it should be excluded from the evaluation given current wording!) There is also no reasonable attempt to require affirmative consent throughout the process, just make people aware they can say no, and this issue should really be addressed in legislation that aims to deal with degenerative illness. Other laws that allow euthanasia are very clear that when consent is not obtained it is still illegal to kill someone. The law simply refers to what to do if someone chooses to receive or not to receive the lethal medication. It should instead refer to consenting or not consenting, so that a lack of consent is treated as choosing not to go through with the process.
There is also no allowance for the evaluation to actually conclude that the person involved isn’t in fact suffering, or criteria for what constitutes “unbearable suffering,” meaning that it’s completely open to a reasonable person test. Remember that “reasonable people” in jury decisions allowed us to beat kids with weapons before we repealed §59 of the crimes act, so while it’s an established legal process, that doesn’t mean it will be enforced well, and the risks for this bill letting things go wrong are very high, because we’re talking about people potentially dying when they shouldn’t, here.
Alarmingly, there is little consideration of the very real slippery slope effect this could have for the elderly, gradually broadening the definition of “unbearable suffering.” Already most people who would qualify or want to qualify are likely to be older New Zealanders, and we should be very careful about the effect it might have on our society to lose this many people. While there is provision to avoid active coercion, there is no provision to rule out contributory effects from feeling devalued, or a burden on the community, that arguably have been observed in countries that allow euthanasia, and whether these could be termed “unbearable suffering.” If I were drafting this bill, I would likely be referring to specific categories of symptoms that trigger eligibility rather than suffering in general, such as “intolerable pain,” or listing specific degenerative diseases that affect the brain. (just referring to loss of mental capacity arguably runs into issues with disabilities and the elderly, again, so it would need to be defined carefully to avoid this. Listing specific degenerative diseases, and giving the Minister of Health the ability to add more via the Governor General, would probably be the best bet to avoid this issue)
Finally, there is no separation between terminal or degenerative disease and disability- in fact the requirements can be read to explicitly include any sort of irreversible disability that involves progressive decline in capability, and this too is poorly defined and could broaden in definition over time if not spelled out explicitly in the Bill. There are very real concerns that this Bill will allow for disabled people to be euthanized, and this concern should be taken in the context of previous medical treatments having been performed on disabled people without their consent, often with painful or traumatizing physical or psychological side-effects. A lack of effort in addressing these concerns would likely cause the Bill to fail at second or third reading, because the Greens’ support at the very least in contingent on this issue being addressed.
This was one of the points of objection that the conservative MPs in Parliament had that I most disagreed with. This bill has a thoroughly sensible regime around conscientious objection- any medical practitioner may object to providing this service, but they are compelled to tell their patients who request end of life options that there will be a SCENZ register available where they can find a practitioner that doesn’t object. This means that the patient is adequately informed of alternatives, but the objector never themselves has to do the direct referral, simply tell them that there is an organization which will arrange the referral for them. I would actually consider taking this approach a little further and allowing them to pass off the duty of informing their patient of the SCENZ register to any willing staff member, so long as they confirm their patient was in fact informed, allowing them even more moral distance from the act they object to.
This approach is in fact so sensible, that we should probably extend it to our abortion law, where currently women (or anyone else who needs an abortion) have no right to be informed of where else they might go to get an abortion if they ask someone who objects to providing one. Whatever your personal opinion on abortion, it is a safe medical procedure, (less risky than assisted dying, in fact) and it is absolutely reasonable if this Bill passes into law, to conclude Labour has no excuse for not extending the same treatment to medical practitioners who object to abortions. You could have the Ministry for Women provide the necessary information.
Currently the allowable penalties for failure to comply with this provision are up to three months of jail time, or a fine of up to $10,000 for most offenses against this act, so likely any non-complying conscientious objectors would simply be hit with a fine. I think that’s probably appropriate in most cases, although I can see a judge getting frustrated with repeat offenders and giving them a short stay in jail.
Providing full information and evaluating the request
This part of the bill is quite good, in that nobody can make a final decision on being assisted to die until they have been informed thoroughly of the nature of their condition, any other options for treatment or palliative care, the fact that they can change their mind at any time, informed of their rights both to talk to family, friends, etc… or not talk to them if they don’t want to, and there must be an effort made to ensure this person has not been pressured or compelled into the decision, in fact the attending practitioner is legally required to do this to the best of their abilities.
There is good evidence that making people aware of their options for end of life care including palliative care, and having them make a decision in advance actually decreases both unnecessary treatment and suffering, and desire for more radical solutions like euthanasia in cases where an option for reduced suffering exists that doesn’t require an early death or simply dying due to giving up, so discussing these options with patients in general is good policy, and I welcome its requirement in this bill because where these methods of giving dignity to the dying are utilized at a patient’s request they are a much more preferable outcome for everyone.
Either two or three medical practitioners must assess the patient independently, (a third is necessary if one or both of the first two cannot make a determination as to the mental capacity of the patient to make this decision) so there are reasonable provisions for assessment in the Bill, but again, assessment only safeguards against things the bill requires to be considered in the assessment, such as direct coercion or inability to make and/or comprehend the decision, and its consequences in the latter case. It also doesn’t provide safeguards to prevent involuntary death in terms of administering the lethal drugs. The requirement for a second independent assessment by a person chosen by SCENZ, however, is a reasonable safeguard against fakery regarding the assessment step in most cases, so it does make sure that eligibility is accurately determined. SCENZ will need to be careful, however, in how they assign people to each other, to ensure there is no room for collusion.
Confirming the decision
Basically, a lot of people are required to send a lot of paper trail to each other. While this is important to establish accountability and make sure people take their obligations seriously, this is one of the weaker parts of the bill, and does not in fact act as a failsafe, and I find the Opposition’s arguments reasonably damning here. More safety measures (such as legal requirements to ensure the patient is still sufficiently committed to this course with each evaluation that the process should proceed, rather than simply reminding them they can change their mind, or requiring an independent observer to be present who can halt the procedure if they think the patient is being/has been coerced or unduly influenced) may be a good idea for the initial introduction of this bill, perhaps with a sunset for some of the safeguards that can be triggered by the SCENZ watchdog group as and when it considers it appropriate, or with agreement by the Minister.
What the bill actually allows and requires
Unusually for such a Bill, this Bill allows for both assisted dying, (where the patient is provided drugs but chooses to take them themselves) and for medical practicioners to administer lethal drugs at the patient’s request. There is a very good argument on the precautionary principle that we should start with just assisted dying where the patient actively has to take the drugs themselves, and leave a provision in the law that if SCENZ has no ethical concerns about how the law is being applied, that we can proceed to allowing medical practitioners to administer drugs, too, as in my opinion that is the most dangerous step, because it can theoretically be done by force rather than requiring co-operation.
It also has some reasonable requirements about dealing with medication that isn’t required due to last-minute changes of mind, but again, this focuses a little much on creating a paper trail compared to actual safeguards, although this may be because those safeguards are implicit in requirements on pharmacists and similar professionals.
It also requires SCENZ (an agency set up to assist with administering the law, “Support and Consultation for End of Life in New Zealand”) to report on statistics and concerns to the responsible minister regularly, and makes various provisions relating to BDM that don’t immediately seem controversial.
This bill explicitly states that it doesn’t interfere with or change existing rights in law to effectively end your own life by refusing treatment or food, which is probably a good thing, as these are important legal principles and are well-integrated into our medical ethics in New Zealand.
This bill allows immunity to conviction (presumably on murder or similar charges) for people offering assisted dying in good faith who took reasonable measures to avoid negligence. This is effectively the heart of the bill, and is very simply drafted. However, this is arguably also a problem, because it might require an experienced lawyer to draft instructions on how medical professionals maintain that immunity, and it’s possible that even if these concepts are defined well and uncomplicated to interpret, they may be difficult to explain well to lay people. While the general concepts are easily explained to someone with passing familiarity to the law, and thus likely to any good nurse, (compliance with the law is a large part of the job) the border cases might be difficult to define. I would have preferred an approach where negligence is well-defined in the law as failure to comply with specific provisions to a specified standard, rather than simply leaned on as a legal concept. Good faith is relatively self-explanatory- you are liable to murder charges if you collude to trick someone into ending their life, or to do it for profit, or any other motive that is against the patient’s best interests. This prevents situations where we’re allowing collusion by prison medics to kill prisoners, or allowing killers who are demonstrably so-called “angels of mercy” to have legal immunity, but there needs to be more safeguards to prevent these types of people from potentially infiltrating the medical profession and actually killing people rather than offering a dignified end to those who want and need it in advance, because preventing murder is literally the first job a society has, and there is a reasonably thin line, although an observable one, between euthanasia and murder, or assisted death and suicide. Likely, the opportunities will be rare enough that serial killers, at least, will not be a concern, but we should be cautious at first because any failures in this legislation are very high-stakes.
As I allude to above, the bill is a very strong approach to euthanasia, and fails to include phase-in or phase-out periods for safeguards and additional methods of assisting people to die with dignity that arguably could cause a slippery slope.
As above, there also needs to be a lot better work done about properly defining eligibility in a way that doesn’t allow loopholes or potentially stigmatize disability and old age.
There are also tricky issues of risk around prognosis of terminal illness versus actually having a given terminal illness, and the accuracy of prognoses. Often we just don’t know enough to give accurate timeframes or even diagnoses of when and whether a person has a terminal disease. While doctors often do very well, there is a very real risk that people without a terminal or degenerative condition will end their lives on inaccurate information, and we won’t find out until after their death. I would hope that this is an issue that receives a lot of debate in public, and in parliament, because we may need some reasonable safeguards in the law here.
If you’d like to submit on the bill, Parliament has opened submissions. You can read the bill on our legislation site now if you want to check parts or the whole for yourself to check if you agree with my criticisms or praise. I have already made a submission along the lines in this post, although it is not worded exactly the way I have worded my feedback here, to avoid it seeming like a form letter if anyone chooses to lift parts of this post for their submission. (which you are all welcome to do if any of my criticism or praise speaks to you)