Table 3 Quotations of the participating legal experts
Quote | Participant | Quotation |
|---|---|---|
The implications of an AED | ||
q1.1 | pI.V | ‘…That ultimately, when it becomes an issue, such a request made in the past is one of the elements of the due care criteria that must be taken into account.’ |
q1.2 | pI.III | ‘My point is that it starts with a written advance directive. […] But that’s preceded by the determination of whether someone’s actually incompetent in this matter. […] So that’s about someone no longer being able to determine their current will regarding their decision of whether or not to want euthanasia.’ |
q1.3 | pII.III | ‘I’m also looking at the UN Disability Convention [United Nations Convention on the Rights of Persons with Disabilities], and I think that older people predict [expect] substitute decision-making, but I believe that when it comes to euthanasia, only support[ive] decision-making is conceivable.’ |
q1.4 | pII.III | ‘So long as someone can express their will, by themselves, this advance directive is just a ‘collateral.’ You can say something about how you thought about it at the time, but you have to look into it further, because… how someone thinks about it now.’ |
q1.5 | pI.II | ‘When you look at the text of the law, you also see that the assessment of a reasonable valuation of interests must take place when the advance directive is drawn up. And not in retrospect.’ |
q1.6 | pI.III | ‘Especially on this very subject, I would say: avoid checklists at all times. The physician must be able to explain thoroughly and independently why he or she has come to his or her decision.’ |
q1.7 | pII.II | ‘…is that two things are often included in requests: when should it take effect? And that’s linked to situations in which people say that the suffering is no longer acceptable suffering. Like: I find it unacceptable to go to a nursing home, that would be great suffering for me, I shouldn’t end up there…’ |
q1.8 | pI.I | ‘Those people go to a civil-law notary and they leave the office thinking that everything’s been arranged, but that’s not true. You actually have to continuously talk and refresh as much as possible. Then it will remain a useful document.’ |
q1.9 | pI.II | ‘I have some scepticism about the idea that people in a situation of declining cognitive abilities would be able to provide an update every time that would improve the originally given advance directive.’ |
q1.10 | pII.V | ‘So, the relativity of all that you may sign in terms of notarial instruments… its meaning must also be made clear. To the client too… primarily to them even.’ |
q1.11 | pI.II | ‘It’s very difficult to foresee what circumstances may occur.’ |
q1.12 | pI.I | ‘Which leaves room for interpretation, but you should try to prevent this as much as possible. […] Yes, there’s something to be gained from better, neater phrasing. Avoiding interpretation problems.’ |
q1.13 | pI.III | ‘That you can’t make watertight whatever might be the patient’s wish at some point in the future. And what exactly they want and don’t want. But I particularly advocate clarity to avoid inconsistencies.’ |
q1.14 | pI.I | ‘That you […] may make it mandatory or strongly recommend that you are advised by a legal professional. […] someone who also takes a look at it.’ |
q1.15 | pI.III | ‘You could give tips, for example. […] Or an explanation of the example document: this is an example; you still have to think very carefully about actual situations… about what you would want or not.’ |
q1.16 | pII.I | ‘A standard text… you’d better be advised to describe in your own words what unbearable suffering means to you. That’s not apparent here [general statement shared in chat]. […] Yes, if that isn’t recorded in further detail, it will still be unclear.’ |
q1.17 | pI.II | ‘That I would prefer [a generic directive] over a detailed advance directive that attempts to address all kinds of circumstances that are difficult for people to foresee.’ |
The role of other stakeholders | ||
q2.1 | pI.IV | ‘But when it comes to the difference in perspective between the representative and the physician, I am more inclined to put the primacy in the hands of the physician. Admittedly, I listen […] to various sources. When it comes to family, nurse and representative. But he [the physician] really has to support it.’ |
q2.2 | pI.II | ‘They [representatives of the patient] can serve as a resource for the physician, but they have no voice themselves. Unlike when they may be able to play a role as representatives in common illness. That’s fundamentally different in the context of euthanasia.’ |
q2.3 | pII.I | ‘The representative can be helpful in interpreting the patient’s wishes and expressions, but can of course never replace the request.’ |
q2.4 | pI.I | ‘But never that he or she [the representative] says: “I’m going to veto now.” Or, “on my behalf, it should be like this.” That’s not possible. Only a source of information for the physician.’ |
q2.5 | pI.II | ‘And when that clashes with what a representative believes is meant by a written advance directive… then, of course, the question is whether this is based on a reasonable argument. A physician will certainly have to heed a reasonable argument.’ |
q2.6 | pI.IV | ‘But then there’s also the possibility… if there’s a difference of opinion… to ask a colleague, like “how do they see that,” […] to have a second physician assess it and take that into consideration or involve the nursing team.’ |
q2.7 | pI.I | ‘Because, in addition to competence, undue influence also plays a role. So, like, the will can be confused […] externally by… erm, yes, undue influence […] coercion from the outside. And that’s very difficult to substantiate. But […] it happens.’ |
q2.8 | pII.IV | ‘I’ve seen too much of it in clinical practice, from representatives who don’t wish to do the right thing for those they represent. So, I’m very wary if the representative has conflicting interests.’ |
q2.9 | pI.I | ‘And I would stress that it’s useful if you [the patient] also stipulate: “if I can no longer say it myself, you have to ask my brother.” Because you can write down what you think yourself, but include in it who you [the physician] should consult.’ |
q2.10 | pI.I | ‘The person who wrote it must also ensure that this representative is able to do so [serving as an informant, providing clarification] as best as possible. Where is the document and what do I mean?’ |
q2.11 | pI.II | ‘I can’t imagine a physician who would say, “oh well, what those nurses are all saying about that suffering, hmmm, […] [he/she] doesn’t know the first thing about suffering.”’ |
The value of current expressions | ||
q3.1 | pII.III | ‘The Human Rights Convention says “own will and preferences” is important. And we need to know how to determine that.’ |
q3.2 | pII.III | ‘What he once stated is only interesting to us insofar as we can no longer figure out what he’s thinking.’ |
q3.3 | pII.II | ‘But from a legal perspective it’s very difficult, for… is the will still there? And that’s actually the question; we think the will get lost as dementia proceeds.’ |
q3.4 | pI.IV | ‘But you do ask a lot from physicians when, in addition to that Supreme Court ruling, the Euthanasia law, the text, they ask: yes, but European law also has frameworks that are relevant. To take those in consideration as well. You can hardly expect that from a physician.’ |
q3.5 | pI.II | ‘It’s good to realise behind it all that a physician who acts within Dutch law is not violating human rights.’ |
q3.6 | pII.III | ‘Then we come to objectively determining what is unbearable suffering. And I think you are only bound to what they say in their advance directive to a limited extent. […]. And then we just have to really consider: is it really suffering or is [the] person perhaps showing all the signs of simply being happy?’ |
q3.7 | pII.III | ‘We have to imagine another complicating factor: how would this patient […] experience this situation if he were competent? Because it’s not self-evident that when I describe a situation, […] that also means that I […] [now] feel the same as when I wrote that advance directive.’ |
q3.8 | pII.V | ‘Those [written advance directives] are made at a time when there’s not yet hopeless suffering at all. And then you have to discuss all kinds of hypothetical situations with your client. […] You won’t be discussing this subject in great detail for a very long time.’ |
q3.9 | pII.II | ‘You have a higher threshold if you make an irreversible decision that ends life. And you have a lower threshold when you have reversible and non-invasive situations.’ |
q3.10 | pII.II | ‘And the rotten thing is that we can’t verify it [the wish for euthanasia] anymore. And that this is becoming increasingly difficult, in the case of dementia, I mean.’ |
q3.11 | pII.III | ‘So, I think [the] wish for life […] is so primary… almost like [an] animal instinct. That if someone says “I don’t want to die, or not now” … that then, from an ethical, legal perspective, we may think that [person] is competent in the matter, to express their “own will and preferences” now.’ |
q3.12 | pII.II | ‘That’s the point I want to make: that we are interpreting much more than establishing the will.’ |
q3.13 | pII.II | ‘It’s always an interpretation by the listener, the value he attaches to the expressions.’ |
The responsibility of interpreting euthanasia requests | ||
q4.1 | pII.III | ‘As soon as it comes to [the assessment of the due care criteria in the context of a death wish], as legal professionals we are absolutely no longer competent. It’s up to the physician to say whether the will [death wish] is there at all, whether the expressions [of the patient] correspond to the will [death wish]. […] The physicians must tell us: that person is not able to express [his] will [death wish]. [That] person expresses his will [death wish] extremely inconsistently. Or [his death wish is] open to multiple interpretations.’ |
q4.2 | pII.I | ‘But that the decision, the conviction that the due care criteria have been met… yes, that’s obviously up to the physician.’ |
q4.3 | pI.II | ‘In itself, the physician is the master of interpretation. They have the right to interpret, and it’s about his or her conviction.’ |
q4.4 | pI.III | ‘It’s also kind of straightforward. The moment you, as a physician, make your decision and are convinced, you are in the framework of the Euthanasia law and no other framework. You will be reviewed against that framework.’ |
q4.5 | pI.III | ‘That physician must be able to explain thoroughly and independently why he or she has come to his or her decision.’ […] It’s all possible, as long as you can explain it.’ |
q4.6 | pI.III | ‘The moment you have any doubts about the voluntariness or deliberateness of the request in the case of a very clear advance directive that doesn’t allow room for any misinterpretation, you are treading on thin ice.’ |
q4.7 | pI.II | ‘It’s not about a physician’s highly personal views, but about whether a reasonable thinking and acting physician arrives at a certain judgement in that context according to their professional standard. […] So, I see a point of reference in professional standards.’ |
q4.8 | pI.III | ‘And the same applies to such a guideline: you shouldn’t want to make it watertight, because it’s precisely the discretion that a physician has and the conviction that the physician should have that make it a very personal consideration for the physician.’ |
q4.9 | pI.II | ‘But the professional physician should have proper legal protection to act and choose in such situations.’ |
q4.10 | pI.IV | ‘But he [the physician] really has to support it. And if not, you don’t have to do it. So [I] think that protection is in place, but only like: is it even understood that way, by the physician? I wonder.’ |