NFP67-Check.info is an information platform which takes up the criticism presented on 25 April 2013 by the Swiss organisations Exit-A.D.M.D Suisse romande, Exit (Deutsche Schweiz) DIGNITAS - To live with dignity - To die with dignity, EX International und Lifecircle/Eternal Spirit of the Swiss National Research Project "End of Life" (NRP 67) done by the Swiss National Science Foundation (SNSF) and reports more and provides background information on this issue.
Shining a light on the National Research
Programme “End of Life” (NRP 67)
The criticism by the Swiss self-determination organisations of the National Research Programme “End of Life” (NRP 67) has proved to be justified. The results of the Synthesis Report that was published on 21 November 2017 and the “Key messages for policy-makers and representatives of interested groups” that were drawn from it by the steering group show that the research programme, with its conservative and religious leadership, aims to undermine people's right to freedom of choice, self-determination and self-responsibility at the end of life and consequently also the will of the Swiss people – and this at a cost of 15 million francs to the Swiss taxpayer.
Assisted dying, patient's instructions and the right to refuse treatment were not examined by the NRP 67 in a results-based and scientifically neutral way, but rather with a clear prejudice against patient autonomy and freedom of choice. The research results are based on one-sided research, and the publications contain inaccurate information. They do not meet scientific standards. The questionable research results are being misused in the debate around “last matters” by the opponents of freedom of choice and self-determination – primarily conservative, religiously motivated individuals, together with “ethicists” and members of “ethics commissions” – to call for restrictions on self-determination in the form of end-of-life regulations introduced through the back door of science, after the Swiss Federal Council, members of the Federal Assembly and the Council of the Canton of Zurich had all rejected them.
Prejudice apparent, even in the Implementation Plan
Even though only about 1.6% of all deaths in Switzerland are cases of assisted suicide, they play a disproportionate role in the NRP 67; they are referred to very frequently in the objectives of the programme. In the NRP 67 documentation, it is taken for granted that assisted dying is something “disputed” and problematic. Apparently, one of the aims of the programme is to “shine a critical light” on “the dogma of self-determination”. It says that assisted dying and a patient's decision to put an end to their own suffering by means of a self-determined death are “socially controversial”, that the use of assisted dying by the chronically ill is “particularly controversial” and that patients opting for assisted dying are making a “controversial decision at the end of their life”. The NRP 67 Implementation Plan reinforces this impression with expressions such as “Discussion about an appropriate way to regulate controversial assisted suicide (Article 115 of the Criminal Code)” and “Proposals for new legal regulation of assisted suicide”. It is typical that there is not a word of explanation as to why this debate about Article 115 should be initiated; this was apparently so obvious to the authors that it required no explanation. The report also openly demands regulation regarding which types of dying should be “permitted”. That is to say, it is not patients who should be able to choose, but some self-appointed experts – preferably bodies motivated by ethics and religion – who should decide what is allowed and what is not; one project refers explicitly to (state) “control of dying”. This attitude confirms the NRP 67 authors' prejudice and could have serious consequences for patient rights:
Patient autonomy put at risk
“Especially at the end of their life, many people no longer have decision-making capacity as a result of serious illness. Yet this is precisely when complex, very important medical decisions often have to be taken: for example, should life-prolonging treatment be withdrawn? Or does the patient even wish to make use of assisted dying?” Statements such as these demonstrate the lack of willingness to show respect for patients at the end of life as sentient human beings who are able to make decisions that affect them personally, or to recognise patient autonomy. It is even less surprising that the Synthesis Report demands “new legal concepts which take account both of the ideal of patient autonomy and of patients' need for protection and care”. In other words: people at the end of life are simply labelled as incapable of decision-making so as to be able to justify protecting those patients from themselves…(!). The extent to which this contradicts the way that the Swiss Federal Supreme Court regards questions of capacity of decision-making in old age can be seen, for example, in Decision 5A_748/2008.
The rights of personal representatives are being curtailed
The Law on the Protection of Adults, Swiss Civil Code (ZGB) Art. 378, paragraph 3, and Art. 379 says: In the absence of guidance in the form of patient's instructions, then the person authorised to represent them makes a decision – and in urgent cases a doctor gives medical treatment – in accordance with the presumed will and interests of the person who lacks decision-making capacity. According to ZGB Art. 377, the doctor giving treatment is obliged to involve the person authorised to represent the patient in compiling a treatment plan for a patient who lacks decision-making capacity and to inform them of all the relevant circumstances relating to the proposed medical intervention.
In the Synthesis Report, this clear regulation is presented as problematic: it says that authorised representatives are frequently out of their depth and dependent on assistance from experts to reach a decision. It also claims that it is legally unclear whether representatives should represent the “presumed will” of the dying person or their objective interests, regardless of that person's own ideas. The Law on the Protection of Adults juxtaposes the two criteria without explaining their relationship.
It is interesting that this statement suggests that the presumed will of the patient is different from their (objective) interests. However, if we look impartially at the relevant article of the Law on the Protection of Adults, there is no contradiction. Consequently, there is no problem with the Law on the Protection of Adults. Rather, there are apparently some groups within and connected with the NRP 67 who want to create a problem in order to be able to curtail the decision-making powers of people authorised to represent patients.
Palliative sedation is questioned
The report says that not only should assisted suicide, a trusted practice for over 30 years, be critically questioned, but also the widespread practice of palliative (terminal) sedation, where, at the dying person's own request, medication is used to put them into a kind of deep sleep to soothe suffering. According to the Synthesis Report, clarification is required as to whether terminal sedation needs to be legally regulated. There is not a word about the fact that such regulation would entail restricting patient autonomy.
Dubious choice of expert opinions
DIGNITAS put forward a request under the Freedom of Information Act on behalf of the Swiss self-determination organisations. The Swiss National Science Foundation (SNSF) and NRP 67 opposed it all the way to the Federal Supreme Court; they wrote that it was simply an allegation that, in the selection process, expert opinions on research applications which suited their ends had been deliberately commissioned, and that they had not acted transparently. However, during the public deliberations of the Federal Supreme Court on 2 December 2015, Federal Judge Thomas Merkli gave an example which showed that “shopping for experts” was definitely part of the established procedure for the NRP 67 programme: Merkli explained how, in relation to one project which was submitted, the SNSF had asked an international academic for an expert opinion which was supposed to assess a large number of aspects. The foreign expert judged the qualifications of the researcher submitting the application, as well as other aspects, to be in by far the majority of cases “poor” or even, frequently, “very poor”; therefore – in the words of Merkli – “miserable”. Instead of rejecting the project, the SNSF decided to get a second expert opinion from a different foreign academic. Merkli described how the new assessor judged both the same project author and the other aspects to be “very good” . In how many cases did the SNSF and NRP 67 proceed in this way in order to get assessments that suited them of the projects that they wanted to include?
Unprofessional researchers and incorrect publications
One of the many sub-projects of NRP 67 is “Assisted suicide: Developments over the last 30 years”. With a budget of 230,493 Swiss francs, this aims to “produce an overview of the last 30 years, i.e. since the founding of the first assisted dying organisations in Switzerland”. Those responsible for the project are the German Christine Bartsch of the Institute for Forensic Medicine at the University of Zurich (IRM) and Thomas Reisch, of the University Hospital of Psychiatry in Bern. The project leaders approached EXIT and DIGNITAS and asked them to help. Using an “internationally standardised questionnaire”, members of EXIT and DIGNITAS were to be asked about their feelings at different times. EXIT asked to see the questionnaire and DIGNITAS had it examined more closely by the Swiss Gallup polling company “ISOPUBLIC”. The results of this examination were worrying:
“Altogether there are 4 problem areas:
a) For technical reasons, the survey should not be carried out as planned. Volunteers who take its requirements seriously could spend hours addressing this difficult subject.
b) The questionnaire is set out in a negative way. All aspects – including those which could easily have been presented in a positive light – are expressed negatively.
c) Some of the questions are hard to understand.
d) The answers are not balanced and definitely need to be modified.
” ISOPUBLIC commented on the questionnaire in detail and came to the conclusion that it suffered from serious deficiencies.
In the newspaper “Der Bund” on 26 March 2013, Thomas Reisch – described in the article as a “suicide researcher” – maintained that “assisted dying is spreading throughout Switzerland” and “people who take their own lives are, in most cases, mentally ill and usually suffering from depression”. He continued: “However, there is a large proportion for whom a great deal could have been done with some assistance.” For a researcher who said he would use the data from EXIT and DIGNITAS in a scientific and neutral way, these are highly questionable statements. It is not just that lonely, high-risk spontaneous suicides and accompanied, physician-approved, rational suicides are bundled together: “suicide researcher” Reisch is ignoring the fact that the increase in accompanied suicides in the Bern area, to which the article refers, is not due to the “assisted dying organisations” which have been present for the last 30 years, but to demographics (more and more people becoming older and older), developments in medicine (better treatment prolongs life but not necessarily the quality of life) and a growing awareness of self-determination among patients.
To cap it all, there was the publication of the pilot study “Suicide tourism: a pilot study on the Swiss phenomenon”, in which Christine Bartsch and Thomas Reisch were involved, among others. The authors apparently deliberately chose the period from 2008 to 2012 to give a distorted picture of a doubling of assisted suicides in Switzerland for people from abroad and so suggest a dramatic result. If the authors had chosen a period of two years longer, 2006 to 2012, they would have only been able to show that the number of cases remained constant. The paper, published in the Journal of Medical Ethics, contains so many mistakes that the journal allowed DIGNITAS to publish a rebuttal .
Religious involvement up to and including the Chairman of the steering group for the NRP 67
The German Catholic moral theologian Markus Zimmermann (ex Acklin) works as a senior lecturer in Special Moral Theology and Social Ethics for the Department of Moral Theology and Ethics at the University of Freiburg in Uechtland. Moral theology is the usual name given to the academic discipline which studies the behaviour and practical lifestyle of individuals from the point of view of ethics and in the context of Christian belief. In 1996, Zimmermann gained his doctorate with a thesis entitled “Euthanasia, a theological-ethical study”; an extended and revised version of this work was published in 2002 in the second edition of the series Studies on Theological Ethics. In it, he rejected assisted suicide – even though it is well established in Switzerland and approved of by a majority of the population – subsuming it under the term “voluntary euthanasia”(!). His thesis was published with financial support from the “Swiss Academy of Medical Sciences” (SAMS), for which he worked as a member of its so-called “Central Ethics Commission”. He is now vice-president of the “National Ethics Commission for Human Medicine NEK”.
It is less well known that he also wrote a draft version of a policy paper called “Old-age rational suicide as a challenge – ethical considerations in the context of the end-of-life debate and palliative care” for the “Swiss National Commission Justitia et Pax” a lay commission of the Catholic Church which identifies itself with slogans such as “Organised death is unacceptable”.
At the trilateral meeting of the German-language ethics committee DACH in April 2015, Zimmermann gave a talk about “The Culture of Dying”. In it, he criticised the option of exercising self-determination through assisted suicide and called for greater consideration of the psychosocial and spiritual needs of the dying – but he gave no concrete suggestions, simply criticising the self-determination organisations.
Among the supportive “scientists” is Brigitte Tag, a professor in the Faculty of Criminal Law, Criminal Procedural Law and Medical Law at the University of Zurich. She had moved to Switzerland from Germany, and tried to propose to the then Swiss justice minister Eveline Widmer-Schlumpf a law on the “Regulation of Assisted Dying”, which had already failed utterly in Germany because it was in breach of fundamental rights.
The SAMS also supported the German theologian Nina Streeck, who, alongside her work as a journalist for the newspaper “NZZ am Sonntag”, was also a doctoral student at the Institute for Biomedical Ethics at the University of Zurich, with a research grant of 38,639 francs. Her aim was to find out whether “social pressure” weighed heavily on the dying or whether they could “genuinely” be themselves, as was revealed in a SAMS bulletin. In the NZZ am Sonntag, Nina Streeck wrote things such as: “According to the assisted dying organisation Exit, it should be easier for the aged to find access to the means for dying. This implies that you can only lead a meaningful life if you can look after yourself. We must counter this false impression.” And: “The assisted dying helpers from Exit recruit their members with the buzzword 'self-determination'. That is misleading.” Later, Nina Streeck worked in Professor Simon Peng-Keller's department of “Spiritual Care”; he, like Markus Zimmermann, had taken his doctorate at the University of Fribourg. The chair is funded by the Roman Catholic and Reformed churches...
There are various further connections between “researchers” involved in the NRP 67 and some of the “experts” who have come from Germany (some with a theological background) on ethics commissions, in hospices, in partnerships at conferences, etc. Names that appear in this cosy network include Regula Schmitt-Mannhart (co-author with Markus Zimmermann of a policy paper for “Justitia et Pax”), Rouven Porz (Chairman of the Board of the Swiss Society for Biomedical Ethics, Ethics Unit, Inselspital Bern), Frank Matthwig (theologian, member of the National Ethics Commission NEK), Heike Gudat-Keller (Hospiz Im Park, Arlesheim), Dr. med. R. Kressig (Acute Geriatrics Department, University Hospital Basel, who came to fame for deciding that his hospital would not issue expert reports for people wanting help with assisted dying), Tanja Krones, Nikola Biller-Andorno, etc.
The NRP 67 incorporates the blatant moral-theological positions of the Catholic Church, for example that dying is “a process of personal growth”.
Really important subjects deliberately excluded
None of the projects in the NRP 67 addressed the subject of overtreatment: according to Prof. Dr Gian Domenico Borasio, Professor of Palliative Medicine, “up to half of all dying patients are given treatments such as chemotherapy, radiation, artificial feeding or antibiotics which will do them no good or may even harm them”. Overtreatment is, he says, “in purely mathematical terms, a hundred times more significant than assisted dying”. He wonders: “Does no one talk about it because there is a lot of money at stake?”
The NRP 67 is closely connected with the SAMS through the Chairman of the Steering Group, the aforementioned moral theologian Zimmermann. Ultimately, the SAMS represents the interests of health officials and hospitals; it was founded by medical and veterinary university faculties and the Swiss Medical Association FMH. There are similar links between Tanja Krones of the NRP 67 project “Planning the end of life (Advance care planning)” and the “Central Ethics Commission at the German Medical Association”. The position of the German Medical Association can be seen in what its president, Frank Ulrich Montgomery, says about assisted suicide: “Leave it to the plumber, the pharmacist or the vet to do...”
Nor did any team of researchers address the subject of the prevention of suicides and suicide attempts, let alone the connection between that subject and assisted suicide – even though the self-determination organisations like Exit and DIGNITAS have been pointing to this connection for years, and projects to do with this were initially included in the federal government's Implementation Plan.
The NRP 67 discredits the reputation of Switzerland as a place to carry out research
The SNSF and the NRP 67 have damaged their own credibility and have only themselves to blame. No serious academic can use the results of the NRP 67 without running the risk of ex-posing themselves to accusations of behaving unscientifically. In that sense, the NRP 67 also damages the good reputation of Switzerland as a research centre. It is disconcerting that the SNSF and the NRP 67 disregard the long-standing and successful practice – followed for many years by established organisations like Exit and DIGNITAS – of combining palliative care, the prevention of suicide attempts, patient's instructions / advance directives and accompanied suicide, both nationally and internationally.
Projects like the NRP 67 show that exactly the same manipulative forces are at play in research as they are in the church or other institutions of faith or power. Although entirely sincere in their original intentions, over time a self-sustaining system develops which is joined by more and more people attempting to promote their own interests by abusing that power for their own gain. The intentions become dogma, attitudes harden, anxieties are fuelled and disseminated, critics are belittled or silenced, and, behind the wall of silence and lack of transparency, personal convictions are presented as the only truth, in the name of some higher cause – in this case, the “strictly scientific approach”. Ultimately, the consequences of projects such as NRP 67, which was self-serving from the start and was designed without any claim to being genuinely open-ended research, are borne by the citizens of our country, whose freedom of choice and right to self-determination are curtailed in favour of prejudiced and religiously motivated paternalism.
One initiative arising from the NRP 67 is to turn the legal concept of assuming decision-making capacity (which is fundamentally accepted in the Civil Code) into a medical concept so that, in every case, a doctor must establish the patient's decision-making capacity. In other words, this means that every competent citizen of Switzerland who is considering putting an end to their suffering and their life, of their own volition and supported by professionals, is initially labelled as incapable of making a decision – and only doctors, and more likely psychiatrists, would be the ones to ascertain and determine whether this citizen can and therefore should be able to… Especially when it comes to accompanied suicide, we know that specialist psychiatrists often refuse to assess patients’ capacity of decision-making and in that way prevent the patient from determining their own end in life.
From 1848 until 1973, the Swiss federal constitution did not allow members of the clergy to be elected to Parliament. Nowadays, a domineering desire for power, combined with religious dogma, is once again entering and influencing our politics and legislation in the guise of “ethics” and “research”. The conservative and religious circles have changed their tactics to achieving their goals: they now appear as scientists, ethicists and researchers – friendly and understanding, and using verbose language. Their soft soap is so reassuring that even the press has nodded off: you'll find hardly any criticism there of the bias, lack of transparency and muddle of the NRP 67. After all, “experts” and “scientists” have worked on the NRP 67, so it can't be unscientific...