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Newsletter RtD-Europe, December 2005

Board RtD-Europe:
Elke Baezner (President), EXIT Deutsche Schweiz
Deborah Annetts, VES UK
Ans Baars, NVVE
Hugh Wynne, FATE
Karen Sanders, VES UK
Executive support: Rob Jonquière, NVVE
Secretariat: Kitty Jager, NVVE

Editors: Ann Beaton, Rob Jonquière, Kitty Jager

LATEST DEVELOPMENTS ON ASSISTED DYING IN EUROPE

Prepared by Ann Beaton, European Research worker RtD-Europe
(based at the Voluntary Euthanasia Society of England and Wales, London)

EMERGING THEMES

At least three common themes can be found in the reports from different countries:

  1. The double effect issue – morphine eases pain and can hasten death. There is a lack of clarity about medical practice here cf the Martin case in UK and Ostende case in Belgium.
  2. Palliative care – it is interesting to note that increased quantity and improved quality of palliative care is resulting from pressure from Right to Die groups for greater changes in the law. Most recent case is Germany.
  3. The imbalance between public opinion and government willingness to act.

BELGIUM
Doctors continue to face problems
(i)Another Doctor arrested
A GP from Ostende was arrested on 29 July and imprisoned for 4 days, accused of having ended the lives of 5 patients in a care home over the last 3 years by unduly increasing their doses of morphine. The management of the home brought the case, because the deaths were “quicker than expected”. The doctor claimed to have acted to relieve suffering and with the consent of the families, who have all confirmed this and made no complaint. He remains accused.

The ADMD’s latest bulletin notes the timely issue of the following statement by the Commission of Control and Evaluation of Euthanasia (CCEE) : “As the giving of high doses of morphine is frequent in the last moments of life to ease suffering, the Commission has interpreted the absence of declaration in these cases as the view of the medical profession that this means of treatment is a treatment of suffering and not as euthanasia, even if death was hastened. In this case we are dealing with a normal medical attitude”.

The ADMD ask whether, in the light of this and earlier cases, there is not a concerted policy on the part of the judiciary and some nursing homes to intimidate the medical profession.

(ii) A Doctor loses his Job
In early 2003 a patient suffering from cancer was brought to hospital as an emergency; she was refusing food and weighed less than 30 kilos. The doctor carried out the action demanded by the patient – but there was no written request.
He then correctly addressed a declaration of euthanasia to the Commission (CCEE) – and that should have been the end of the case. However the doctor happened to discuss it with a colleague and soon found himself asked to leave the hospital at once – and not to return.

The hospital then made a formal complaint to the magistrates and to the Belgian General Medical Council. Both rejected the case, which then went to arbitration. The verdict was issued in the summer: no reinstatement for the doctor but condemnation of the hospital which was obliged to pay him a triple compensation: (a) for the failure to give him notice; (b) for defamation of character and (c) for having failed to consult the General Medical Council before dismissing him.

The ADMD draws several lessons from this case. First, there should be no question of a doctor not making the regulatory declaration; only by making the declaration could he justify his action. Secondly, the requirement that there should be a written request for euthanasia is not an absolute: such a document is proof of the request but it is possible to establish the position in other legally valid ways. In this case nurses had received the oral requests of this patient and mentioned this in their case notes. The rapid deterioration of the patient made it impossible to obtain a written confirmation. Finally, it is illogical for the hospital management to seek to hijack the conscience clause in the law, designed for the doctor.

FRANCE
The French ADMD is continuing its active programme of lectures and conferences, with a busy schedule of over a dozen sessions in November and December.

Catherine Leguay’s book
Publication of the book about Victor Humbert in September, reported in the last newsletter, stimulated a major article in “Le Monde”. The article points out that, two years after the death of her son, Marie Humbert and the doctor in the case still wait to know if they are to be prosecuted for helping the paraplegic to die. The decision is due by the end of this year. Meanwhile Dr Chaussoy’s lawyer will be submitting a paper to the judge arguing for a dismissal of the case in the light of the law on the end of life.

The article reports that since the death of her son Marie Humbert, with the support of ADMD and the group “Faut qu’on s’active!” (We need to take action), has collected 180,000 signatures, including those of several celebrities, in favour of a legal right to give someone active help to die. It also quotes the head of “Faut qu’on s’active” Vincent Lena as strongly condemning the “sort of large-scale charade played out in the vote on the end of life”. “The French have been sold a set of phantom regulations which would not apply to cases such as that of Vincent Humbert”.
On the other hand, as recently as 8 September the Minister of Health declared himself totally opposed to going any further than the law voted in April. On the same occasion he promised regulations on living wills and “a person as Guardian” before the end of the year.

New board of management for the ADMD
We set out below the list of members of the new Board, as sent to us by ADMD France:
Gilles ANTONOWICZ, Lise BANKIR, Alain BARROUILLET, Henri CAILLAVET, Henri CHAMARET, Paul CHAUVET, Edith DEYRIS, Marc DREYFUS, Gisèle DRON, Régine GRASSANO, Claude HURY, Gérard PAYEN, Alain PINTUREAU, Jacques POHIER, Jean-Luc ROMERO, Josette SOTTILE-NOCCA, Françoise STELLER, Christian TEYSSEDRE, Chantal URTIN-PETIT.

Members of the new Committee:
Président: Gérard PAYEN, Vice-Présidents: Edith DEYRIS et Jean-Luc ROMERO, Secrétaire général: Alain BARROUILLET, Secrétaire générale adjointe: Claude HURY, Trésorière: Régine GRASSANO, Trésorière adjointe: Chantal URTIN-PETIT.
Honorary President: Henri CAILLAVET

GERMANY
Dignitas to open office in Germany
The Swiss organisation Dignitas has set up its first office abroad, in Hanover, Lower Saxony. The office, established in September, will provide information to people considering assisted suicide but will not supply drugs, as in Switzerland. Anyone wishing to have an assisted suicide would still need to go to Switzerland. President Minelli of Dignitas made clear that there was the possibility in Germany of drawing a distinction between accompanying a suicide and actively helping someone to die.

The opening of the office has provoked controversy in Germany. The Justice Minister of Lower Saxony has announced her intention of trying to change the national law to rule out assistance with suicide, especially if done on a commercial basis. German doctors are also totally opposed to having Dignitas operate in Germany.

DGHS on the other hand has welcomed Dignitas’ decision and not all Ministers in other regions see the need to rule out all forms of euthanasia. The organisation suggests there is a deliberate policy in the media and on the part of other interested organisations to confuse the issue. The media have even implied that the President of the German Medical Association does not know the difference between accompanied suicide and active help to die. The Government’s response so far has been to announce its intention of spending 250 million euros on palliative care wards and hospices but to repeat its previous condemnation of euthanasia.

Publicity Week
For the third time since 2001 the DGHS organised a “week for the right of self-determination” in early November. This consisted of a series of lectures and conferences throughout Germany and in Austria to discuss end-of-life issues.
At the end of the week the DGHS issued a press notice calling for German people to be given the right to decide on end of life questions independently. They point out that the media give more space to negative views; in fact the public is much more open-minded, so they need a say on the question. Also a senior Hamburg law lord recently re-opened the debate by demanding a clear legal right to help someone to die.

President’s statement
German President Horst Köhler has come out in support of DGHS’ long-standing campaign for clear legal rules on living wills. This was endorsed by DGHS President Wichmann who called for regulations reflecting the broadest possible consensus in order to avoid the stigma of taboo or “political correctness” in relation to doctor-assisted suicide, irrespective of whether that involves active indirect or active direct euthanasia. He called for the training of all medical professionals to make clear that all patients have the right to self-determination, not only practising Jehovah’s Witnesses who can refuse blood transfusions.

ITALY
Libera Uscita
The Society Libera Uscita held its second national meeting on 23 October 2005 in Rome. After the reports of the President, Secretary and Treasurer, Maria Di Chio, Vice President, presented a study concerning the ethical foundation of euthanasia, which was discussed by the members at the meeting. After the discussion the members approved the following resolutions: a) to confirm their support for Sen. Battisti’s euthanasia Bill and also the Benvenuto Bill on advance directives; b) to carry out a thorough study of the issues concerning euthanasia, especially in relation to terminally ill new-borns, as carried out by doctors at the Groningen University Medical Centre, and c) to introduce new Bills in 2006, when there will be a new government in Italy. Then the members of Libera Uscita elected their Board: Giancarlo Fornari, President; Maria Di Chio, Vice President; Giampietro Sestini, Secreatary; Luigi de Gasperi, Treasurer were all re-elected.

The Society “Civilta Laica”, together with Libera Uscita, organised a meeting on “Euthanasia: a Right, not a Crime” on 19 November in the city of Terni (Umbria). Libera Uscita’s President, Giancarlo Fornari, gave a presentation on the activities of the Society and the Bill concerning advance directives. At the end of the meeting the film “Million Dollar Baby” was shown. The meeting was very successful, so the two societies now want to organise similar meetings in other towns.

In November many students from a high school in Verona (Veneto) organised a meeting on euthanasia. The film “The Sea Inside” was shown at the start of their meeting and afterwards Maria Di Chio gave a presentation on the activities of Libera Uscita and explained the meaning of voluntary euthanasia and of physician-assisted suicide. She particularly drew the attention of the students to the fact that voluntary euthanasia is based on the principle of autonomy and liberty. The students were very interested and put many questions to Mrs Di Chio.

NETHERLANDS
Groningen Protocol
For the last few years a group of doctors in Groningen have practised a system of ending the life of severely handicapped new-born babies. A Commission, consisting of a lawyer, a paediatrician and an ethicist, monitors such deaths and reports to the local Prosecutor’s Office on any cases causing concern. It is proposed that this system, which currently covers some 20-30 cases each year, should be established on a national basis on the lines of the Commission monitoring euthanasia. It would not require any change in the law. This question has been in the news recently following an article in a scientific journal.

The NVVE has expressed the view that, if doctors are involved in this activity, it is better that it be done openly than in secret. They have made clear however that this issue is outside their remit.

Palliative Sedation
On 7 December the Royal Dutch Medical Association (RDMA) issued a report on palliative sedation. Until now this has been regarded as a purely medical decision but a year ago the government and the Prosecutor’s Office called for the profession to regulate it more formally, if they were not to face legislation/state regulation. In their guidelines, the RDMA come out firmly with the view that palliative sedation is not a replacement or alternative of euthanasia but a recognised normal medical procedure. Difficult cases arise only where there could have been overdoses or where adequate doses were refused.

NVVE Symposium
On 9 December the NVVE organised a symposium for professionals on “ Suffering of Life, may we finish it…?”. The purpose of the discussions is to establish the boundaries between euthanasia for the terminally sick on the one hand and the right of self determination for those who find their suffering intolerable and wish their lives to be ended, the “lastwillpill group”. In between we find the results of the RDMA appointed Dijkhuis Commission, which say that intolerable suffering of life is also a medical problem and thus part of the medical domain, and thus reason for euthanasia. The problem there is that the Supreme Court has ruled in the Brongersma case (2000-2002) that finding one’s life’s suffering intolerable was not a reason for euthanasia as permitted under the law. Such suffering was not a medical condition and did not therefore qualify for assistance with suicide.

NORWAY
The Norwegian Association has reported that it has not been very active during 2005 but has plans to step up its activities next year. However we welcome the contact now established for the first time with the newsletter and look forward to reporting from Norway in the future.

SCOTLAND
The Dignity in Dying Private Member’s Bill promoted by Jeremy Purvis, Liberal Democrat MSP, ran out of time on 11 November 2005. We understand Mr Purvis is now seeking another Parliamentary mechanism to promote his Bill, failing which it will not be able to proceed this Session.

SWEDEN
“Reflections from Sweden”.
By Norman Gumbricht, Member of the Board of RTVD.

The Swedish Association RTVD (The Right to Die with Dignity) has during the years of its existence tried to make its aim known not only among the members of the association, who – for obvious reasons – hardly need to be convinced, but also among the general public, and we have especially endeavoured to get government, local authorities, medical associations etc to show some interest in or at least listen to what RTVD has to say as representative for a great number of people – a great number of people (both inside and outside our association), who consider it their natural right to decide about their death as much as they have the right to decide about their life. Until quite recently the wall of silence and lack of interest with which we were confronted by the establishment was almost compact. However, a change seems now to develop.

The question of Last Wills, Terminal Sedation, Assisted Suicide, and Euthanasia has lately been more openly discussed. Certainly not in the sense of acceptance or as a desirable part of medical treatment, but the very fact that the problem now no longer seems non-existent must be seen as a progress.

A young MP has put forward a proposal in respect of euthanasia, which is expected to be discussed in parliament during the month of November. Even if it is quite unlikely that parliament will accept any such proposal, the fact that the question has come up at all is very encouraging. The Swedish Medical Association, in particular its “Delegation for Ethical Issues”, have recently expressed the view that they are not opposed to the question of euthanasia being submitted to the government for examination. Not a big step, but still a move in the right direction.

Only some weeks ago it was reported in the Swedish press that a relatively young man, who was totally disabled after a motor accident, who could communicate with manual signs only but who had been able to indicate clearly that he wished to end his life after many years of suffering, had finally, helped by his family, gone to Switzerland and there died in the care of DIGNITAS. It was the first time ever that a Swedish citizen has taken this step and the case caused considerable public attention. The question arises, of course, what the local establishment can win by refusing this poor man such help at home instead of having him take the painful road to a foreign country. Even if a patient is fully determined to end his life, the final decision to do so will cause him anguish and qualms, and it can be easily imagined how much heavier this burden will be if he has to investigate, inquire, arrange and settle the necessary formalities abroad. Travel in his condition can be no easy task, and bringing back the body for burial in his own country involves further difficulties. How much more dignified and endurable would it not have been to comply with the patient’s request at home.

Furthermore, we feel quite convinced that opening the possibility of euthanasia under restricted and supervised conditions does not mean that every patient actually will make use of it. The mere thought of euthanasia being available will be such a comfort for many that only a few of them will ask for it at the end of the day.

However, as mentioned above, we look forward to continued and successful work and we feel encouraged by the work of other associations in the countries around us.

SWITZERLAND
Are numbers of assisted suicides increasing?
A year ago it was impossible to know whether the record number of assisted suicides – 131- was a one-off peak or indicated an upward trend. It will be a few more years before one can give a definitive answer.

In 2004 EXIT accompanied 154 severely ill people as they died. The number of requests for assisted suicide also increased, not least from those who were not members of the Association, which presented a further problem.

On the plus side people’s confidence in EXIT has clearly increased. Not a single official inquiry has resulted in a complaint – on the contrary. EXIT received regular and positive feedback for its care in preparation of cases, its carrying out of its work and the documentation of cases.

Medical professionals also look to EXIT – some make direct contact; others recommend patients to get in touch. This has raised the difficult question of treating non-members. EXIT sees itself as primarily available to its members. The management is now seeking a solution to this in consultation with the Ethics Commission and the Professional Standards Commission.

EXIT now has a team of 14 men and women who accompany the seriously ill at their death. This team plays a large part in EXIT’s good reputation, as do the doctors, who work with them and who often find themselves opposed to officialdom, not least because the drugs they require are not as readily available as EXIT would wish. This is not only a problem for the doctors but also for EXIT’s members, who find their right to self-determination restricted. This situation needs publicising and encourages EXIT to play a politically active role to improve it.

UNITED KINGDOM
VES Annual General Meeting 12th November 2005
(i) Change of name
There were two major resolutions at this year’s AGM. First was the proposal to change the name of the Society to Dignity in Dying UK Ltd, campaigning under the name Dignity in Dying.

Deborah Annetts gave a presentation on the reasons behind the name change and the research that had gone into this. Over the last few years, MPs, Peers, doctors, nurses, charities, and other stakeholders kept telling us that our name is a barrier to changing the law and winning more support. Most importantly, at the 2003 AGM members overwhelmingly called for a change to our name. So in January 2004 the Board set up a Name Change Subcommittee. We asked members for suggestions. 168 suggestions came in. We decided to do things internally, rather than spending £100,000 on branding professionals. After a lot of hard work we came to two names, ‘Dignity in Dying’ and ‘Choice in Dying’. After both qualitative and quantitative research, ‘Dignity in Dying’ came out top by a very long way. The Board endorsed the research and put the name to the members for their decision. The members voted by ballot and at the AGM.

The vote at the AGM was clear: 177 for, 38 against, and 8 abstentions. This was also mirrored in the proxy voting: over 3,500 in favour, 151 against.

Choice is also very important hence the strapline – ‘your life, your choice’.

(ii) Changing the Memorandum and Articles of Association
The second resolution was to change the Memorandum and Articles of Association (‘mem and arts’) of the organisation. Essentially “the mem and arts” needed to be amended to reflect more fully the strategic direction of the organisation. A Governance Subcommittee worked very hard with the society’s legal advisors on amending the ‘mem and arts’ in order to achieve the appropriate structure for the organisation.

The extension of the Articles is well explained in a statement from the Society’s Chair, Karen Sanders: “As medical technology has advanced, the dying process in many cases has become longer. This has resulted in the development of palliative care as well as a mass of guidelines around refusal and withdrawal of treatment, which could not have been foreseen by the founders of VES in 1935. It is clear that dying has become a more complex process and that this means there is often a large gap between the service which is delivered in relation to the end of life and what people want”.

The key changes proposed were:

  • To extend the scope of our campaigning – we have been asked to campaign in Scotland, the Channel Islands and the Isle of Man as well as England and Wales;
  • To campaign for patient choice at the end of life – VES is increasingly being called on to advise on withholding and withdrawing treatment, not just assisted dying. This is a key change in VES’ activity;
  • To set up a new charity – this will improve our chance of setting up an associated charity – and stop us losing out on bequests and gift aid etc.;
  • To guarantee elections to the board and promote democracy. At the moment there is no requirement for elections to the Board to take place each year; in future these would be guaranteed. The new rules would also remove the nomination requirement for candidates for the Board. As most members join as individuals, not as a part of a group, they have been unable to get elected to the Board if they did not know other members, who would propose them. Removal of the nomination requirement will be much fairer.

Again this was put to the members. Over 2,200 members voted for the changes, less than 100 against.

House of Lords Debate
On 10 October the House of Lords had a major debate on Lord Joffe’s Bill on assisted dying for the terminally ill, the largest ever on this subject in the UK Parliament. The Bill went further than any previous legislation and there was unprecedented support for a change in the law.

35 peers spoke in favour of the Bill, including medical professionals and expert health advisers. Of those who opposed the Bill 16 held strong religious views and it was significant that religious leaders of all faiths united in opposition. As the VES pointed out, they represent a very small minority of the UK population.

At the beginning of November Lord Joffe reintroduced his Bill into the House of Lords, this time basing it more closely on the Oregon model, i.e. allowing assisted suicide but not euthanasia. The Bill is due to get its Second Reading in the New Year. If the Select Committee recommendation is accepted, this should be passed on the nod and the Bill would then go to a Committee of the whole House.

A recent survey by YouGov found that 87% of the UK public support a change in the law; only 42% of doctors oppose a Bill limited to assisted suicide, as proposed by Lord Joffe.

VES Meetings
The VES is holding a series of meetings around the country as a means of introducing members to each other and giving them the opportunity to meet members of the staff. The first of these meetings took place in York in September and more are planned over the coming months.

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