UK Medical Records Sellout Delayed: NHS Realises It Needs to Inform People of their Rights

So, some of you may recall my rather negative comments on a UK national plan to make NHS medical records which are not even fully anonymised available to not only research universities, but also – totally unnecessary from a medical research standpoint – private industry in the pharma and insurance fields. This in spite of the fact that it takes just a few snippets of information combined with a medical sample to correctly trace the individual from whom the sample has been taken these days. Former posts are here, here and here. A very recent report in the Guardian is here.

Yesterday, the BBC reported that the plan – which unnecessarily jeopardizes the interests, integrity and liberty of masses of people, besides putting them at risk of being discriminated against for health reasons – has been delayed, since the NHS "has accepted the communications campaign, which gives people the chance to opt out, needs to be improved". That is, the "campaign" consisting of no information at all whatsoever, and which was made public only thanks to some vigilant bloggers – especially MedConfidential. The "campaign" consisting of the NHS apparently deliberately making its very best to hide from the public that they have the unconditional right to opt out of the whole scheme and how they may go about claiming that right. No wonder that the lead-heavy players in the field such as "The Royal College of GPs, the British Medical Association and patient watchdog Healthwatch England have all voiced concerns".

The plan is to devise an information campaign, which – lets hope – actually informs people about their right and gives them as easy access to the form to fill out to opt out as they facilitate the sellout of patient medical details and records. By August it will all be ready to roll-out the system, the responsible ones promise. I believe it when I see it.

Just in case they don't: here's once again the link to all you need to opt out. If I lived in the UK, I certainly would fill out and hand it in immediately! The inconsiderate hurry, carelessness and obvious money-hunger of the forces having pushed this setup into place inspire everything but confidence and trust. I'm sure there will be more to come eventually.

Legalised Euthanasia for Children Regardless of Age in Belgium: The Actual Law in English

The past few days we have heard the reports of the change made to the Belgian (permissive, but also restrictive) euthanasia law that makes it include children of all ages among those who may lawfully receive medical help to end their lives. For instance here, here, here and here. None, however, have had access to or quoted any actual English translation of the new law. Thanks to my colleague Kristof Van Assche at the Vrije Universiteit Brussel's Faculty of Law and Criminology, I'm now happy to be able provide one for interested readers, with the following disclaimer: This is Kristof's own provisional translation, based on this English version of the original law and his own added translations of the made changes. Kristof posted it in the closed Facebook group for bioethics scholars, Bioethics International, and gave me permission to share it with a wider audience in this way. Here comes screenshots from the original post just referred to:

And here, to make quotation easier, is the text in plain text:
 

Law of 28 May 2002 on Euthanasia, amended by the Law of 13 February 2014 – Consolidated version [changes in brackets]

Chapter II: Conditions and procedure

Section 3

§1. The physician who performs euthanasia commits no criminal offence when he/she has verified that:
- the patient is a legally competent adult, a legally competent emancipated minor, [or a minor with the capacity of discernment] and is conscious at the moment of making the request;
- the request is voluntary, well-considered and repeated, and is not the result of any external pressure;
- the adult or emancipated minor patient is in a medically futile condition of constant and unbearable physical or mental suffering that cannot be alleviated, and that results from a serious and incurable disorder caused by illness or accident;
- [the minor with the capacity of discernment is in a medically futile condition of constant and unbearable physical suffering that cannot be alleviated and that will result in death in the short term, and that results from a serious and incurable disorder caused by illness or accident;]
and when he/she has respected the conditions and procedure as provided in this Act.

§2. Without prejudice to any additional conditions that the physician may wish to attach to his/her intervention, he/she must in advance and in each case:
1) inform the patient about his/her health condition and life expectancy, discuss with the patient his/her request for euthanasia and the possible therapeutic and palliative courses of action and their consequences. Together with the patient, the physician must come the belief that there is no reasonable alternative to the patient’s situation and that the patient’s request is completely voluntary;
2) be certain of the constant physical or mental suffering of the patient and of the durable nature of his/her request. To this end, the physician has several conversations with the patient spread out over a reasonable period of time, taking into account the progress of the condition of the patient;
3) consult another physician about the serious and incurable nature of the disorder and inform him/her about the reasons for this consultation. The consulted physician reviews the medical record, examines the patient and must be certain of the patient’s constant and unbearable physical or mental suffering that cannot be alleviated. He/she drafts a report on his/her findings.
The consulted physician must be independent of the patient as well as of the treating physician and must be competent to give an opinion about the disorder in question. The treating physician informs the patient about the results of this consultation;
4) if there is a nursing team that has regular contact with the patient, discuss the request of the patient with the team or its members;
5) if the patient so desires, discuss the request of the patient with his/her relatives appointed by him/her;
6) ensures that the patient has had the opportunity to discuss his/her request with the persons that he/she wanted to meet;
7) [when the patient is an unemancipated minor, consult, in addition, a child psychiatrist or a psychologist, and inform him about the reasons for this consultation.
The consulted specialist takes note of the medical record, examines the patient, verifies the capacity of discernment of the minor and certifies this in writing.
The treating physician informs the patient and his or her legal representatives of the outcome of this consultation.
At a meeting with the legal representatives of the minor, the treating physician provides them with all the information specified in §2, 1° in and verifies that they agree with the request of the minor patient.]

§3. […]

§4. The request of the patient [and, if the patient is a minor, also the agreement of the legal representatives] have to be put in writing. The document is drawn up, dated and signed by the patient himself/herself. If the patient is not capable of doing this, the document is drawn up by an adult person who is designated by the patient and must not have any material interest in the death of the patient.
This person indicates that the patient is incapable of putting his/her request in writing and indicates the reasons why. In such case the request is drawn up in the presence of the physician and the said person mentions the name of the physician on the document. This document must be annexed to the medical record.
The patient may revoke his/her request at any time, in which case the document is removed from the medical record and returned to the patient.

[§4/1. After the physician has treated the request of the patient, the persons concerned are offered the possibility of psychological assistance.]

My most sincere thanks to Kristof for allowing me to share.

What is Derek Parfit to do with the Prize Money? Preliminary Explorations

As I reported yesterday, All Souls (Oxford) emeritus and moral philosophy giant Derek Parfit has been selected as the 2014 Rolf Schock Logic and Philosophy laureate and, in effect, will receive about € 68 000. After having cheered at this excellent choice for about 24 hours (this affirming him as a worthy winner), I'm now moving to the next, obviously more pressing question:

Whatever should he do with the money??

There are, to start with, three crude options – a sort of A, B, C of the philosophy of Derek Parfit, if you want – needed scrutiny to commence exploring this complex issue, which has received far too little attention since Sartre refused the Nobel Prize, before getting philosophically serious with some deeper complications. I will here preliminary probe this exciting topic, employing only some of the tools sharpened and left ready for use on the kitchen zinc by the master himself.

Thus:

Consider:

The three options:

The Grand Gesture
Derek refuses the money in a grand gesture of public display - e.g., as a protest against the lack of female Schock laureates, the ridiculousness of scientific prizes, or somesuch.

Well-earned Enjoyment During the Fall of Life
Derek receives the money and then spends it on having a good time for himself and his close ones after a long life of hard academic work and duty.

Making the World a Better Place
Derek receives the money and uses it for a morally good cause (better than giving them away to elderly philosophy professors, that is).

Some philosophers would doubt that any of these strategies can be justified. I claim, however:

The Parfit As the Assumed Subject – Holding Certain Positions which Will Not Change Just Because Someone or Else Doubts them – of this Blog Post Justificatory Principle Claim:
 A blog post discussing a subject related to Derek Parfit which is not literally about the issue of the possibility of justifying normative positions, can assume the Parfit stance on the possibility of justifying normative positions.

That is, that it exists. A little bit, I'm sure. In principle, at least. And being in the land of principles at the moment, this will do until I'm done (see the latter part of this post).

However, affirming (tentatively) this possibility does not imply that it is easy. On the contrary, I claim:

The Very Much Difficulty of Solving Intricate Moral Problems Related to Derek Parfit Claim

Which, I trust, explains itself (and, if you insist, can be confirmed by at least 15 years of Swedish practical philosophy students at the BA level).

Now, consider the option of The Grand Gesture. It is obvious from his writings that Parfit is enough of a consequentialist to hold this option as justified only if it leads to some sort of sufficiently good relevant effect, such as a future adjustment of the gender imbalance of the prize laureates or the refusal of the Rolf Schock Foundation to award any more prizes. However, it is equally obvious that any such effect depends on not only what Derek Parfit does, but how this is fitted in with what a large number of other agents do (and in this case, have done). Therefore:

Consider:

The Possibly Endlessly Divided Possible Protest
Many people, some now, some in the past and some, yet unidentified, in the future may together act to form an effective and justified protest for the worthy cause C. However, some in the past have already failed to do their part and it is undecided how many in the future will, although we assume that it is possible for enough of the latter (whose total number is unknown) to act in a such a way as to make a choice of the presently deliberating agent Derek to participate in the possible protest into actually participating in an actual effective protest which will eventually be completed.

What should Derek do?

This is a conundrum demanding theory X, and thus we presently lack the theoretical context to properly assess The Grand Gesture and I for one will dub any attempt at doing it in the absence of X as the 6th mistake in moral mathematics.

Therefore, instead consider the option Well-earned Enjoyment During the Fall of Life. It is obvious that any worse wise-cracker than me would here begin invoking puns relating to problems of personal identity and thereby believe something of relevance to the philosophy of Derek Parfit having thus been linked to a ridiculous attempt at being funny at the expense of his obvious aging. I reject this claim. Instead, I affirm the claim that relation R is what creates trouble for the Well-earned Enjoyment During the Fall of Life. While it is patently obvious that the Derek receiving the prize is also the Derek who deserves it whatever his ages at different stages might have been, and thus the right to enjoy it – he has the same social security number as that young man winning an All Souls fellowship without having a doctorate and who eventually went on writing an influential little essay called "On doing the best for our children", doesn't he?! Duh! – so, that's obviously settled as a deepest of deep further facts. However, lacking enough of relation R – I mean, just look at that hair!....

....and no glasses as in some other and earlier pictures I have seen – this is of no help, as relation R is what matters.*

Thus pending theory Y, which would provide the missing reason for why a laureate should enjoy a prize in the absence of relation R, it is time to move on to the option Making the World a Better Place. 

Consider:

(Q) Quirky as it may be to determine what is a morally good cause in the case of Derek, there actually exists one.

(P) The good cause referred to in (Q) is (as it were!) (N)**

Even if that is so, however, it may be undetermined what N is. Many would claim the opposite (and truth to be told, so would I if I had only eaten a better lunch), but I nevertheless claim that although N does exist, there is no definite N, such that Derek should choose promote that particular N with his (well-earned) prize-money. In effect, there is no reason for Derek to choose option Making the World a Better Place.

Oh, well, Nagel might object, so:

Consider:

The Many Equally Important Beneficiaries of Derek's Doing Good
Depending on exactly how Derek goes about doing good with his prize money by choosing a particular version of N, different people will travel around differently, meeting different people and so on, after 5000 years resulting in a great number of different spermatozoa to exist than if Derek had made another choice of N. Perhaps all of the ova will be the same, how would I know? But the central fact we assume is this: the good of Derek's action for the world will not occur earlier than in 5000 years time. Thus completely different people will benefit and let us – when we're at it, what the heck – assume that they would all benefit the same. Some economists would question that claim. I, however, claim the opposite of that questioning, thus affirming my original claim as positively supported from a theory of rationality yet to be formulated.

In any case, the upshot is that we need theory – obviously!! – Z to be able to provide a reason for picking out any particular way of doing N in order be justified in any sort of rational support of Making the World a Better Place. We are back were we started in our Derek Parfit A, B, C:

X, Y, Z.

Ta! from Gothenburg!

*) Some readers may not remember the famous relation R from the now lost 34th edition postscript to Reasons and Persons, where the overly abstract notion of the original analysis of R had been ironed out to more concrete form; now signifying the As Ravingly Dashing Head of Hair as Ever relation.
**) If you ask yourself what (N) is, you obviously know nothing of philosophy and needs to attend university.