by NexDev | April 27, 2018 | Old age and Dependency
The “ESEC” (Economic, Social and Environmental Council) has recently requested for the French government to launch a generalized public citizens’ debate on ageing and greater dependency in their draft opinion submitted on April 24, to the Health Minister, Agnès Buzyn.
The ESEC addressed the issue of advanced aging and greater dependency, in view of the on-going personnel crisis in the French nursing homes (“EPHADs”). At their plenary session held on April 24th they voted an opinion statement entitled “Aging with Dignity“, which includes 15 recommendations. At a time when the “EHPAD” personnel are experiencing enormous distress due to staff shortages and poor working conditions, the ESEC intends to adopt the flagship recommendations of the parliamentary mission to double the number of nurses and nursing aides within the next 4 years.
The report underlines the fact that the current services and accommodation for the elderly “are inadequate for their needs and expectations”. Among the 15 recommendations in their report, the ESEC concurred that “as soon as possible, a wide public discussion should be held, to address sources of funding for collectively managing the loss of autonomy”. The ESEC also recommends reuniting everyone involved in this field to “ascertain the main points for long-term sustainable financing for home care services”. They suggest carrying out studies to better identify “any social and territorial disparities in the subsidiary programs” granted by different regions, in order to better equilibrate the Personalized Autonomy Allowance (PAA) levels.
Finally, the report underlines the importance of preventing the loss of autonomy, “throughout life” and “especially at work” in order to “limit or delay the effects of aging”. The ESEC also recommends “expeditiously lift” the obstacles for the administrative procedures for time-off periods developed for caregivers. The report also stresses the necessity of maintaining social contact and fighting against solitude and loneliness.
All these recommendations are a welcome contribution to the ongoing broad-based deliberations for the past few months in France, concerning how to best manage healthcare for the ageing population. Nevertheless, the ESEC’s work is diminished by a recent opinion published on the end-of-life, a highly controversial statement which recommends legalizing euthanasia, by disguising it as healthcare.
As emphasized by Tugdual Derville, Alliance VITA’s general delegate *:
“Today some elderly people are being marginalized from society; how tempting it could be for us to deem that their lives are not worth living. When their health begins sliding downhill, how tempting it could be to employ the means to finally “be finished” with this life that is burdensome! This is an enormous risk! At these most difficult moments, the knowledge that we won’t resort to an expeditious process of euthanasia, can incite us to be much more inventive and show more solidarity.”
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* Quote from the Round Table discussion on End-of-Life organized by the Social Affairs Committee of the French National Assembly on April 18, 2018.
by NexDev | April 25, 2018 | Palliative care
Life-support treatment was withdrawn by legal order in the UK in the evening of April 23, 2018 for 23 month-old toddler, Alfie Evans. His parents have filed an urgent appeal for a transfer to Rome where the Italian authorities have accepted to care for him.
Born on May 9, 2016 Alfie has a degenerative neurological condition, which is difficult to diagnose. Since being admitted to the Alder Hay Children’s Hospital in Liverpool, he has been in a pauci-relational state on a mechanical respirator. The toddler’s young parents have filed numerous lawsuits in the past few months, to contest the hospital’s requests for withdrawing Alfie’s life-support treatment. They have already lost a series of appeals in the High Court, the Court of Appeal, and the London Supreme Court who all ruled in favor of the Liverpool Hospital considering that the latter “must be free to act in the manner which has been established to be in Alfie’s best interest.” The parents’ appeal to the European Court of Human Rights (ECHR) was also rejected.
Faced with the impending ruling from the British courts to withdraw the tot’s respiratory assistance, several prominent individuals have recently become involved: including Pope Francis and the President of the European Parliament Antonio Tajani. The authorities in Italy are ready to offer Italian citizenship to Alfie so care could be continued in a hospital in Rome.
Nine hours after stopping his respirator, the little boy continued to breathe spontaneously on his own; in the morning he was hydrated and received oxygen. The parents’ lawyer filed a new emergency appeal on Tuesday, April 24th, requesting his transfer to Italy. During the hearing the Liverpool Hospital doctors voiced their circumspection for the child’s short-term medical condition, in the event of a theoretical transfer. Then in the evening, the British court ruled against the transfer to Italy but considered the possibility that the parents could take Alfie home.
A new hearing is scheduled for Wednesday afternoon, April 25th.
This case is reminiscent of another heart-breaking case, that of the little Charlie Gard, who died on July 21, 2017. Charlie’s parents had protested against stropping treatment, but after final medical examinations, accepted that their baby’s respiratory assistance be withdrawn.
by NexDev | April 25, 2018 | Bioethics
To participate in this year’s National Consultations on Bioethics in France, Alliance VITA has requested for people to share their testimonies when facing certain trials in life such as: infertility, disability, illness, bereavement…
In response to VITA’s request at the end of January, these testimonies were published on their website to contribute to the widespread citizen involvement for the National Consultations on Bioethics taking place this year in France.
Just a few days before this National Bioethical Consultation website will be closed to public comments, Alliance VITA has published an online, illustrated collection of the testimonials which they have received hereto date, that will be updated in the coming days.
Each one of these personal stories reminds us, that behind all the topics being discussed, are genuine men and women for whom technology and legislative measures do not respond to their distress. Different subjects are addressed varying from the difficulty conceiving a child, to accompanying someone at the difficult end-of-life period, to hearing the announcement of a handicap,
The reality is much more complex, painful, and necessitates a retrospective journey, that is to say time. And these testimonies invite us all to leap forward in a burst of human solidarity.
“I was pregnant with my first baby who was diagnosed with a serious heart malformation at 6 months … »
Twenty years ago, I was expecting my first child. A serious cardiac malformation was diagnosed at my 6th month of pregnancy. Only two outcomes seemed available: either ending pregnancy for medical reasons or therapeutic obstinancy after my baby’s birth. The pressure I felt from the medical and social services was very strong, in an atmosphere of panic and emergency. My son died at 6 months of pregnancy, from a ‘medically performed abortive procedure”. I felt immeasurable guilt and pain. Even today, I still regret this act. It would have been so much healthier for me if my son was born and died a natural death, where he could have received palliative care if necessary.
Juliette
« If something serious happens to me, I want you to donate everything …»
I am a mother of 3 children: Camille age 20, Pierre age 26, and Alexis, who was 23 years old. Alexis died on May 9, 2015 following an accident when he was chopping wood. Alexis was in a state of brain death. Previously in the winter of 2015, he expressed his desire to be an organ donator following a broadcast the family watched together. His words “if something happens to me, donate everything” have allowed our family to be more serene about his decision for donating. Alexis gave his organs to 6 different people. Afterwards we founded the association “Alexis, an energy for life” (“Al.é.lavie”) in tribute to him and to allow families of organ donors to be heard. Many associations have been founded for people receiving transplants in France, but very few if any for living donors or families of deceased donors. In March 2017, we set up a discussion group in the French region of the Rhône-Alpes, headed by professionals who support relatives of organ donors. We also try to that for this sensitive subject of organ donation every citizen receives better information which is clearly explained in the context of our bioethical laws. In my opinion, the ethical rules for this field must be conceived in collaboration with the medical, associative, political and civil members of society. To contribute, we hope to help families of organ donors express their feelings and opinions.
Catherine
« I can testify to the beauty of the last months of life, which certainly comprise physical and moral suffering, but so much more… »
As a psychologist specialized in palliative care in patients’ homes, I can that I have witnessed and experienced the beauty of individuals’ last months of life, which are both physically and morally painful, but also more fulfilling than imagined! How many families try to exceed what is expected of them? How many families undertake an incredible journey filled with dialogue, introspection, and thinking of others? How many families have gone from “I give up, I can’t continue anymore, let’s finish off with this” to “happily we had these months together; we were able to talk to each other, to address previously topics which had previously been ‘taboo’…And still others: “I didn’t think I was capable of accomplishing that, I feel proud to have accompanied my family member until the end”…
Ombeline
« After 2 to 3 years together, we still were awaiting the birth of our 1st child. »
After 2 or 3 years of married life, we were still were unable to conceive a child, so we investigated causes of infertility. After medical testing without any positive prospects, the doctors proposed an IVF inherent with all the questions and issues related to conserving embryos and the artificial reproduction technique (ART) disassociated from any form of physical and emotional act of love. We were uncomfortable with this proposition which we finally turned down. The doctors were ambivalent about our decision. We then turned to adoption procedures, to especially receive a living child in our home, compared to fabricating a child at any price. Happily, medical techniques continue to evolve! But we must consider that their role is to repair, or to replace cells of pathological tissues, but never to circumvent and modify an organ or a human body, to preserve the natural human condition without trying to liberate its’ state from the respect of its human contingencies.
Carine
« According to his wishes, he died at home with palliative care. »
On September 2nd, my husband expired from cancer contracted 11 years ago when he was 49 years old. He died according to his desires: at home with palliative care. I would like to testify to render homage to the accompaniment by the nurse, the doctor, the healthcare team and my mother which were exceptional for both of them. The end-of-life is very precious in both directions. It’s too important to be deprived of signification, cannot be esteemed to be meaningless, nor ultra-medicalized, abridged artificially, nor trivialized…
Dominique
« At birth, the doctors said that I wouldn’t live…»
I am 56 years old and I was born with a spina bifida. At birth, the doctors said I wouldn’t survive. I was in an incubator for 2 ½ months. Already at a young age, I had to fight for life. The doctors then said that I would have VERY SEVERE disabilities and that my parents should not become attached emotionally. At 2 ½ years, I started reeducation and finally took my first steps at 6 ½ years old. I live independently despite my great walking difficulties and my complete incontinence (I requested an artificial bladder at age 10). I have worked non-stop for almost 32 years. I LOVE Life and I defend it. I deplore and scream that no one speaks out for others No one has the right to say that a child won’t be happy in life just because he is disabled. An autonomous individual cannot imagine how it is to be disabled. Today, most children who are diagnosed with spina bifida are aborted and are never born. I have the right to say that I survived. I agree with medical research to improve the lives of people with disabilities, for cures, to heal them.
Claire
by NexDev | April 20, 2018 | Medically Assisted Procreation
On April 18, 2018, Alliance VITA held a presentation and dedication ceremony in honor of their Director of Training and Research, Blanche Streb, for her new book entitled: “Customised Babies – Survival of the Fittest”1 (published by ARTEGE editions).
Interview
What motivated you to write this book?
Because not only in France, but elsewhere, we are in a state of ethical crisis. The government is suggesting that surrogacy without father may be authorized. Even the fact of speaking of such a drastic permutation show that we are on the verge of a commonly accepted right to have a child. For any situation whatsoever, even in case unrelated to infertility. The right to have a child is the first step towards ordering babies from an “à la cart” menu. We must be on the alert when we see how the reproductive marketplace and pre-selection process is already expanding in other countries: the US, Belgium, Spain, Cyprus, Ukraine etc. Is this really what we want for our country…to have the right to place an order for a child?
Debates concerning surrogacy without a father have clearly shown that French people disapprove it. Society is “not ready”. Fortunately, the priority still prevails in favor of the best interest of the child.
« Customised » babies?
This is a baby that can be conceived in both the figurative and literal definitions of the term. Firstly as a “project” designed with certain parameters, then tangibly with artificial fertilization in a test tube.
Why the survival of the fittest?
The customized baby earns a right to exist by meeting certain criteria. For example, by not having any known genetic disease or even not being predisposed to a disease (even though testing doesn’t ensure that the baby will not ultimately be affected); – or by corresponding to the chosen aesthetic criteria: size, eye color, sex …; – or by being genetically boosted to be “better” than the others… Hence this subtitle: the survival of the fittest is a world where human existence yields to technology, where human beings, besides being selected to obtain the right to existence, would then be improved, or even “enhanced”.
What’s wrong with wanting to improve the quality of human beings?
It is a viewpoint on the slippery slope towards eugenics. And the techniques ignore any precautionary principles, making the embryo an object, a guinea pig. Most of the methods are neither safe nor effective. None of this can eliminate suffering from our lives nor make humans any better. It cannot guarantee happiness for either the customised babies or their designers, and it doesn’t contribute to build a fairer or more hospitable civilization…. To be born after the sorting process or genetic manipulation could make those individuals feel as if they exist only “thanks to the technological goodwill” of someone else. A bit like a probationary period throughout their entire lives. Am I good enough, perfect enough? Do I sufficiently meet the specifications that I was designed for? Then why am I not completely, totally, and permanently happy if that’s what I was conceived for? To whom can I complain? And for what? Doesn’t refusing to accept an anomaly, a weakness, entail the risk of nipping happiness in the bud?
What is the objective of your book?
It’s an overall summary on the topic and how we reached this point. What are the techniques used today for selecting and creating babies “à la carte”? How far can technology go: artificial gametes, babies created from 2 people of the same sex, 3-parent IVF? I also discuss the impact for these means of conception on the child, on the parents, on human relationships, on society… Finally, I propose some keys to help encouraging a burst of conscience: rediscover human biodiversity, refuse the genetic bar code, reflect on the ethics of donating, and define the progress for serving mankind… I think it is time to rethink the whole process of artificial reproduction and set boundaries that we can all agree upon. We must step back from our fascination with technology. What biotechnology allows today for surrogacy cannot promise what we all hope for: a better world! One must always ask oneself: does this technical progress really lead to progress for mankind?
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Bébés sur mesure – le monde des meilleurs, Blanche Streb, Artège éditions, 2018.
This book is available in French at your regular bookstore or by order.
![[Press Release] Clandestine Showroom for Reproductive Techniques (ART) Opens in Paris](https://www.alliancevita.org/wp-content/uploads/2018/04/showroom_vita-1080x675-1.jpg)
by NexDev | April 17, 2018 | Medically Assisted Procreation, Press Releases
To denounce the actual facts hidden behind the slogan “ART for all”, on April 17, 2018, the VITA Association has opened a “reproductive boutique» for 3 days in the passage Choiseul, a shopping street in the 2nd arrondissement in Paris.
As successively explained by VITA’s representatives: Tugdual Derville, General Delegate; Caroline Roux, Coordinator of Listening Services and VITA’s International Director; Blanche Streb, Director of Training and Research, this latest initiative aims to prevent society from transgressing into a marketplace where the human being is considered as “a product, a custom-made commodity, that is selected and sorted, that can be bought and thrown away”.
The so-called “ART for all” that France is currently debating, aims to extend its’ access which until this point has been reserved for medically diagnosed cases of infertility. Alliance VITA demonstrates how this would shift towards a new reproductive paradigm – the right to have a child manufactured by ART- which would in a general manner lead to abysmal consequences for human dignity, and in particular for the most vulnerable human beings.
In the aisles of this boutique one can select surrogate women, anonymous genitors, choose from a stock of gametes, and order custom-made babies. In this manner VITA denounces:
- what has already been performed elsewhere,
- what is already happening in France, with impunity,
- and what could become legal in the future …
When laws don’t regulate technology, new developments continue to generate new markets and create an increased demand: for the sale of gametes, for renting women’s bellies, for “optimizing” human beings, for ordering custom-made babies, for systematic prenatal and pre-implantation testing, for babies born from 3-parent IVF, for genetically-modified embryos, for artificial gametes, self-begetting, etc.
Whether or not the reproductive market is a liberal profit-seeking business affair, – or state-controlled – in itself it thereby plants the seeds of totalitarianism and eugenics. Because individuals are being treated as objects or machinery whether it is the child, the man who produces the gametes, or the woman who produces a baby.
The French National Consultations on Bioethics demonstrate citizens’ involvement in the issues and their hostility to establishing the “right to have a child” and to the eugenics induced by the new reproductive techniques. The citizens’ response cannot be ignored by President Macron.
Alliance VITA’s covert boutique is “the last appeal to President Macron before organizing a widespread public rally”.
Since the president is the one who must ultimately decide, Alliance VITA asks that France:
- protect its principle of non-commodification of human beings and human body parts
- defend the dignity of individuals on an international level against the non-regulated ultra-liberal marketing of human beings.
