Vigilance following the announcement of the development plan for palliative care

by | December 4, 2015 | End of life, Palliative care

On December 3, 2015, the Health Minister announced a new development plan 2016-2018 for palliative care, with a budget of 190 million Euros, with 40 million attributed for 2016. This was the follow-up to the promise made by President François Hollande in July 2012 which had gone unheeded.

The objective of this plan is to create new palliative care units and mobile teams for palliative care, with better territorial distribution. It also comprises creating a specific university sector, with an academic staff dedicated to palliative care, as well as a national information campaign on the advance directives.

For Alliance VITA, this plan arriving almost 3 years late does not respond to current challenges. It is actually 500 million Euros over five years which are necessary to respond to the needs of accompanying those at the end of life in France. As a member of Relieve suffering without killing, Alliance VITA supports their proposal for a dual vigilance plan: vigilance on the application of the law concerning the end of life, which entails risks of drifting towards euthanasia, and vigilance on the practical and effective implementation of the government’s proposed plan.

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Press release from Soulager mais pas Tuer (Relieve suffering without killing), December 3, 2015

 

Palliative care: an insufficient plan after 3 years of accumulated delay!

 

For Relieve suffering without killing, the development plan for palliative care announced today can only partially make up for the unfair delay accumulated since 2012.

To date, the public authorities haven’t kept their promises for the development plan for palliative care made by the President of the Republic in July 2012. Right in the middle of the debate on the end of life, the plan announced at the end of 2015 is bewildering: will it be able to catch up with the accumulated delay over 3 years? Indeed France has long known a situation of patchy end of life health care and training programs proposed in this domain, without mentioning the great disparities between regions.

To only budget 190 million Euros over three years starting in 2016, is still insufficient to respond to the needs of accompanying those at the end of life, since we had estimated, as early as 2013, a need of 500 million Euros over five years.

This is why relieve Suffering without killing has announced the launch of a dual vigilance plan:

Vigilance on the application of the law concerning the end of life, which entails risks of drifting towards euthanasia, which appears as a menace the very essence of palliative care;

And vigilance on the effective implementation of the announced plan and its adequacy to the real needs of the French.

Often presented as a way of bargaining the endorsement of the law concerning the end of life, law which is both useless and dangerous, the new plan would also have an alarming scope if it led to a confusion between palliative care and euthanasia, via protocols for terminal sedation with deprival of nutrition and hydration that the law for the end of life may well encourage.

Egg freezing to postpone pregnancy does not appeal to French women

by | December 4, 2015 | Bioethics, Medically Assisted Procreation

Published on December 3, 2015, a survey from the Odoxa institute, carried out in a private Spanish fertility center, the Eugin clinic, reported the majority of French (59%) were opposed to legalizing the freezing of ovocytes for non-medical reasons by women who wished to postpone pregnancy to a later date.

This technique would allow women to conserve their reproductive cells while still young in order to become mothers at a later date. Currently in France, this is not authorized except for medical reasons, for example before chemotherapy which potentially leaves the woman infertile.

The idea of extending this possibility to all women was not unanimously received. As for the idea of personally having recourse to this procedure, if it were authorized in France, 83% of the women responded in the negative.

The reasons cited by those questioned regarding their misgivings to push forward the law were first of all, moral and ethical considerations. Vitrification ‘for reasons of personal convenience” implies the risk of selecting embryos for 37% of the women. 25% mention the fear of commercially exploiting the distress of women, and another 25% esteem the procedure to be “against human nature”. 11% of those interrogated were concerned that this procedure would reinforce the idea that motherhood prevents career advancement.

At the end of 2012, the National board of French gynecologists and obstetricians declared they were favorable to using this technique “for personal convenience”. Nonetheless, there is nothing innocuous about it. It requires the woman to submit to exams, then an ovarian stimulation followed by a surgical intervention to retrieve the ovocytes in the ovaries. The risks related to this procedure are not zero. Furthermore, freezing ovocytes does not guarantee pregnancy at a later date, using in vitro fertilization. According to Eugin, for women aged 35 to 37 who kept their ovocytes frozen, only 62% would have a chance to have a child. A percentage that drops to 52% for women aged 38 to 40.

Recall that we are still awaiting a recommendation from the French National Consultative Ethics Committee on society questions related to medically assisted reproduction. These questions could be addressed within that framework.

3rd International Day for the disabled

by | December 3, 2015 | News

Since its inception at the UN’s initiative in 1992, the International Day for the disabled will again be held this year on December 3.

For the 2015 edition entitled « Sustainable development: social inclusion matters”, M. Ban Ki-moon, UN General Secretary transmitted this message: “This year, we are celebrating the International Day for the Disabled the day after adopting an ambitious Program of sustainable development on the horizon for 2030. This worldwide action plan commits us to taking the necessary measures to insure that no one be left behind.”

This day is an occasion to improve awareness of disabilities, especially in academic establishments so that disabled youth might be better attended to.

For Tugdual Derville, Alliance VITA’s general delegate and founder of the association A Bras Ouverts*: “This day is one more opportunity to think of all the people affected by disabilities. The associative network of our country has made magnificent progress in opening hearts to understanding so that the most vulnerable and injured have their rightful place in society. But we live with an ambivalent mentality, split between an open attitude towards differences and the rejection of vulnerabilities. How can we care for the human being and for each person without reaching out to the most vulnerable! Accepting those who are vulnerable is the first criteria of our humanization.”

Health Law, a key moment after Parliament members' vote

by | December 2, 2015 | Bioethics, News

The Health Bill was voted on by the members of parliament on December 1st, during a second reading, with 296 votes for the law, 243 against, and 16 abstentions, which is to say that with a majority weaker than in the first reading. It must be examined again by the Senate in a few days.

Presented by the Health Minister, Marisol Touraine in October 2014, the law had already been examined in a first reading by the National Assembly (voted on in April 2015), then by the Senate (voted on in October). Since the accelerated procedure was established by the government, there was no second reading. However, the two chambers failed in elaborating a consensus text during the Joint Committee (CMP) which followed at end of October. The text has just been examined another time by the MP’s, and it will be so by the senators from 14th to 16th of next December. A second CMP should follow, the result of which is uncertain: in the case of another failure, the MP’s will have the final say by an ultimate vote, which is expected before the end of December.

This law has become in the course of discussions a “catch-all” law. Initially it contained 57 articles and ended up with nearly 230 articles, described in 200 dense and complexe pages. It is still subject to numerous controversies on various subjects of society, such as generalizing direct payment of by national health insurance for medical consultations, “neutral” cigarette pack, experimenting “shooting rooms” for drug addicts, etc.

Many measures which raise important bioethical issues will be discussed again in the Senate mid-December:

Enabling midwives to practice medication abortions (article 31). In fact, the idea of this extension seems to be widely supported; the debate only remains on one sentence about “abortion for medical reasons” (IMG) that would remain solely the responsibility of doctors.

The creation of regional action plans to access abortion (article 38). This measure, discreetly introduced by an amendment at the end of the discussion at the National Assembly last April, could prove to have serious practical consequences. Based on an experimentation carried out in Ile de France, the idea is to set abortion quotas to be achieved in each hospital or clinic, as a percentage of the number of births. If health establishments from now on have a quota of abortions to complete each year, without doubt under the threat of financial penalties, isn’t it contradictory with the primary objective of preventing abortions, which aims at avoiding abortion as much as possible?

The permission to make research on gametes and embryos within Medically Assisted Procreation (MAP) (article 37). This is to permit, within MAP, biomedical research on gametes or on embryos in vitro, including for gestational purposes. The actual scope of this article is still to be assessed, in particular the content of these research and the role of the Biomedicine Agency which permits, until now, all embryo research. The government holds tight to this amendment introduced during the parliamentary discussion, undoubtedly under the pressure of researchers who pretend to be held back in their research by the current legal dispositions, although they were made largely more flexible since a 2013 law.

The post-mortem removal of organs without the consent of the relatives of the deceased (article 46ter). Up until now, the consent of the donor is assumed, except if expressly refused, but in practice, no organ removal is done if relatives oppose it. To obtain more grafts, from now on, one would no longer consider the relatives’ consent : they will simply be informed before the removal of organs, but their view will no longer be important. This idea provoked strong reluctance in the public opinion, notably among the professionals concerned.

The last three measures above had been removed by the senators last October. They have just been reintroduced by the Members of Parliament, and the senators will have to vote again on these issues in the days to come.

However, some articles were voted on by the two assemblies, and cannot be discussed any more. Amongst the most important ones regarding abortion: the removal of a week’s waiting period for reflection before an abortion (article 17bis) and the ability to practice instrumental abortions by doctors in health centers (article 16bis).

A last measure that concerns all families, but that was passed largely without notice, is to be mentioned: funeral care and embalming. The government has insisted on banning them at the place of residence where families often stay with their dead until the body is buried. To avoid sanitary risks, which in reality, are unproven, this type of care would only be possible in professional funeral homes. Officially, the idea was to remove the ban on embalming for people affected with the HIV virus or Hepatitis, which was claimed by many associations in the name of non-discrimination towards homosexual people. A majority of MP’s and senators refused this restriction of liberty which affects all the population, since other, less constraining, solutions can be considered.

Techniques for modifying the human genome: a major preoccupation

by | December 1, 2015 | Bioethics

The Crispr-Cas9 technique which enables the modification of the human genome is at the center of the preoccupations of an international conference taking place in Washington from December 1st – 3, at the initiative of the American Academy of Science and Medicine, for which the Britannic Royal Society and the Chinese Society of Science are participants.

In an article published in Nature, the biologist Jennifer Doudna, co-founder with the Frenchwoman, Emmanuelle Charpentier of this technique, announced that she expects this conference to lay down clear guidelines on security, communication, international cooperation, rules, and prudence, as to what is ethically acceptable or not.

This technique is a simple, inexpensive, flexible, genetic tool, which allows the correction of defective DNA of all cell types: whether vegetable, animal or human. “It’s a bit like a Swiss knife which cuts DNA at a specific spot and can be used to introduce a complete series of changes in the genome of the cell or of the organism”, explains Emmanuelle Charpentier. One of the most important potential applications would be new therapeutic techniques for certain human genetic diseases.

But the dilemmas brought about by this are serious, especially since the announcement in April 2015 by a Chinese team who modified a defective gene in several human embryos. In fact, the CRISPR-Cas9 technique enables modification of human DNA in embryos, ovules or spermatozoids, and that, in a way that becomes transmissible from generation to generation; to make it short “customized babies” and “improvements in the human genome”.

In October 2015, the UNESCO International Bioethics Committee called for a moratorium on the techniques of editing human reproductive cells DNA in order to avoid modifications in opposition to ethics of individual hereditary characteristics, which could lead to the resurfacing of eugenics.

For Tugdual Derville, Alliance VITA’s general delegate: “ethics do not purely and simply forbid the use of a promising technique, but we ask politicians and scientists to issue appropriate and effective guidelines, to determine the limits that must not be transgressed. These techniques of editing DNA applied to human reproductive cells or to human embryos legitimately cause dizziness: we are risking the emergence of custom-made babies. At a time where the climate and our planet occupy all our leaders, we should recall that the human genome is the most precious part of “the heritage of mankind”. Its integrity must absolutely be preserved for future generations. This is therefore a major challenge for governments, who, unfortunately, have not yet realized it.”