by NexDev | June 22, 2018 | Palliative care
The young 14-year-old Inès, who had been in a coma for one year, died recently when mechanical ventilation was disconnected. On January 5, 2018 the doctors recommended this decision, which was validated by the Council of State. Treatment was discontinued on June 19, 2018, against the parents’ wish.
On June 22, 2017, Ines had a cardiac arrest at home, due to her rare neuromuscular disease: autoimmune myasthenia gravis. The ambulance emergency squad resuscitated her and admitted her to the University Hospital in Nancy, where she remained unconscious but in stable condition since then, via artificial ventilation and gastric tube feeding.
On August 3, 2017, the parents were informed in writing of the physician’s decision to extubate Inès and stop mechanical ventilation, after having implemented the collegial procedure provided for by law, judging that it was now a situation of “unreasonable obstinacy”. However, they agreed not to enforce the decision against the parents’ will.
The parents then filed several different appeals. In January 2018, the Council of State’s report stated that “according to the report established by three medical experts, carried out on request of the administrative court in Nancy, the neurological prognosis of the child is even more severe, she is in a persistent vegetative state, unable to communicate, the irreversible nature of the neurological lesions being certain in the current state of science “. As a result, “considering the current knowledge in medical science, continuing treatment could be characterized as unreasonable obstinacy”. The European Court of Human Rights came to the same conclusion.
The date of Tuesday, June 19th, was chosen to disconnect the respirator, which was to be accompanied by highly qualified palliative care. This procedure is a tragic and painful experience for loved ones. The parents attempted to postpone the deadline, which was finally postponed until late afternoon. The young girl died 40 hours later on Thursday morning, June 21st. Security forces had to restrain both parents from interfering during the discontinuation of the respirator.
The French “Inspectorate General of Social Affairs” (IGAS) published its evaluation of the 2016 end-of-life law. The report gives suggestions for assisting medical teams and families in the event of tenacious conflicts. Quite frequently, medical teams initiate the decision process to limit or cease treatment, while patients or their families are often convinced that their best interest is to remain in opposition. The rapporteurs explain that “medicine finds itself trapped by continual rhetoric on medical progress”.
For Alliance VITA, it is agonizing to speak out on such cases of human suffering. Nonetheless, last January, Alliance VITA’s General Delegate, Tugdual Derville proposed his reflections on the current case. He carefully showed the difference between the case of Inès, and that of Vincent Lambert, who is in a pauci-relational state and does not require mechanical ventilation.
“The situation of the young Ines cannot be compared to that of Vincent Lambert. It is with respectful trepidation that we speak out on situations involving conflicting opinions within families, or between relatives and caregivers, which have been made public, either by media coverage or by legal accusations. Nevertheless, for Vincent Lambert’s case, we spoke out to emphasize that in our viewpoint, pursuing an enteral diet (once a gastric feeding tube has been inserted) and giving artificial hydration, both essential for the life of a pauci-relational or neuro-vegetative patient does not constitute unreasonable obstinacy, but only due care, which patients always deserve (to be kept warm, washed, dressed, fed, and hydrated). It should be noted that Vincent Lambert is not in an end-of-life situation, and that he breathes without mechanical ventilation.
Regarding young Ines and the arduous conflict between her parents and the health care team, the case is completely different in our opinion since she can no longer breathe without mechanical ventilation.
- After suffering a cardio respiratory attack at the end of June, as a secondary effect of her genetic disease, it is possible that at the beginning of summer, the recommendation to cut off the respirator, which was keeping her alive, was made hastily and without compassion.
- Nonetheless, the role of medicine is not to keep seriously-ill and unconscious patients artificially alive for months on end, by mechanically forcing their respiratory function.
- Furthermore, once the patient’s condition has been stabilized, and if his health permits, he will breathe spontaneously once the respirator is disconnected.
- Therefore, in principle it is not an act of euthanasia, since the objective is not to cause death, but rather to stop treatment which has become unreasonably overzealous, and which is inappropriate to impose on the person to delay death. If the long-term respiratory maintenance virtually prevents a patient from dying, it can be qualified as abusive and overzealous care.
According to the law dated April 22, 2005 regarding rights for the sick and those at the end-of-life, care is qualified as “overzealous” when medical procedures “appear useless, disproportionate or when they have no effect except that of maintaining artificial life “.
The difference between stopping a respirator versus stopping nutrition and/or hydration may seem to be a rather tenuous and fine line but, for us and our medical advisors, it is crucial, if the medical practice wants to remain on the cutting edge of appropriate treatment, that is “Neither disproportionate treatment, nor euthanasia”.
by NexDev | June 22, 2018 | Medically Assisted Procreation
When China’s government abolished their one-child law, it triggered unprecedented consequences on surrogacy, since the Chinese are now resorting to it, and some of them are even going abroad to circumvent the Chinese law.
The majority of couples who have a single child now wish to have a second child. However they are either too old or they want to select the sex and/or verify that there are no disabilities. However these practices are prohibited by Chinese law, as well as freezing oocytes or embryos.
Some couples circumvent the Chinese law and go to Southeast Asia. In China, nearly 80 million women are missing due to gender selective abortion, because Chinese families prefer to have a boy rather than a girl.
In 40 years, 330 million selective abortions could have been practiced. For demographic reasons, China now strongly prohibits this practice, while international and European organizations severely condemn this practice based on human rights’ regulations.
According to the Qianzhan State Research Institute, this so-called “reproductive tourism” registered 1.4 billion dollars of business last year and has already grown by 22% this year. The president of Singapore’s “Borderless Health Group” announced: Southeast Asia has a new industrial business chain“. Their future plans include developing sperm and egg banks in Thailand, Australia and the United States, primarily to target the Chinese.
by NexDev | June 22, 2018 | Bioethics
For the annual International Organ Donation Day, held on June 22, 2018, the French Biomedicine Agency launched an awareness campaign to promote donations. Their objective is to clarify the meaning of the presumed consent for organ donation stated in the 2016 Health Act in France, which has created uneasiness and apprehension that human bodies could be state controlled.
Organ donation has been addressed during the ongoing French National Bioethical Consultations. According to the French Biomedical Agency, there were 5,891 transplants in 2016, but nevertheless as of January 1st, 2017, there were still 14,500 patients on the waiting list for an organ transplant: an increase of 29.8% in the past 10 years in this country.
Although donations are to be encouraged in order to save lives, specific guidelines must be strictly respected. It is a major challenge to respect the people in such situation, especially the most vulnerable, and also to promote the practice of organ donation, which is based on mutual trust and confidence between those who are cared for and caregivers.
by NexDev | June 22, 2018 | News
On June 20, when Vincent Lambert’s three court-assigned doctors resigned, the Administrative Court in Chalons-en-Champagne, France, is now reconsidering whether or not to request a new expert for assessing the clinical recommendations for his case.
Appointed by court order on May 2, 2018, the 3 designated doctors were given one month to assess and report on Vincent Lambert’s clinical status. They handed in their resignation on June 14th, stating “they were not able to resist against criticism and attempts of manipulations”. They pointed out that “the three experts have no way of properly organizing this expert assessment, nor do they have the authority to control those who handle contempt, slander and lies”. In the end, the doctors suggested that the court appoint “a panel of experts, invested with undisputable authority”.
The June 20th hearing was intended to determine “the terms of the expert assessment”. The court president explained that the court is now faced with “two options: either appoint 3 new experts for an expert assessment, or conclude that the expertise was a failure, and, in such a case, “decide without further delay whether or not to stop treatment.
On one side of the family, Vincent Lambert’s parents’ lawyer Jean Paillot states “We’ve requested this expertise, and especially the truth on Vincent’s medical status” since “his state of awareness and responsiveness has changed”. Paillot also requested that the expertise be carried out by a specialized unit, outside of the hospital.
Those willing to stop treatment include other family members, and among them his wife and legal tutor, Rachel and his nephew François. Their lawyer Mr. Gérard Chemla, states that in any case “the expertise will not change the debate since the doctors have already gone as far as they can go and it is a case of unreasonable obstinacy”
As for now, the date for the hearing has not been set.
by NexDev | June 15, 2018 | Palliative care
On 12th June 2018, the French “General Inspectorate of Social Affairs” (IGAS) published its evaluation of the 2016 end-of-life law. The report gives 30 recommendations for a more homogeneous application of this law and for an improved consideration of the most vulnerable.
This report has been anxiously awaited ever since November 2017. At that time the French Health Minister initiated the request in order “to evaluate the law’s application, especially for training health professionals, implementing advance directives as well as naming the trusted individual for these directives, providing access to palliative care throughout the country, and establishing deep sedation in various health facilities, in nursing homes (EHPAD’s) or at home (“HAD”).
The report calls for “minor corrections in the existing law and regulations“, reminding that “keeping the regulations unchanged is essential to allow professionals, individuals facing the end of life, as well as their families and relatives, to have a good command of these regulations”. According to the rapporteurs, “The February 2, 2016 law, which was quickly adopted, gave an encouraging impetus for managing the end-of-life and developing palliative care”. With only 2 short years of field experience to evaluate how the law is being applied, this comprehensive report nonetheless shows the desire for improving the management of end-of-life situations, without denying the complexity of some situations.
The rapporteurs emphasize an urgent need for a more reliable system to input the data on end-of-life medical decisions. In particular, they mention the need for a specific tracking, at national level, for decisions to restrict or discontinue a treatment, as well as for deep and continuous sedation until death “. In view of the lack of research concerning the end-of-life research, the report recommends that the topic of “Palliative and End-of-Life Care” be promoted in calls for national projects and in the programs run by major research organizations.
In view of these deficiencies, and of a problem of governance at the National Center for Palliative and End-of-Life Care, the report also recommends that this Center, created by the 2016 law, be audited “for better knowledge of palliative care, but also for monitoring and evaluating the public policies regarding the end-of-life “.
In recent years, advances have been made in palliative care training, but these efforts need to be improved to develop palliative care and to reduce regional inequalities. In the following analyses and studies carried out in the past few months, the report underlines the importance of developing palliative care in nursing homes (“EPHAD’s”).
Advance directives and person of trust
It appears that people are more at ease in designating a person of confidence, than writing their advance directives. Although it is true that the collection of advance directives can be “improved” and that there is still a little number of directives, yet the rapporteurs mention that they are not mandatory. “Even if there are many different forms, of unequal quality, their proliferation should still be encouraged”. Some patients are in favor of simple forms, while others are reassured by exhaustive forms.
Mainly handwritten on plain paper, the legal binding aspect for the advance directives is in fact compromised by a vague wording. However, “the majority of health professionals (doctors, caregivers, hospital staff), all agree that there is more open and improved communication with patients and their loved ones on the end-of-life. They ascertain that the February 2, 2016 law helped curtail taboos, allowing discussions for speaking about suffering, support, comfort, sedation, and adapting to changing situations over time.“
How to define “Unreasonable Therapeutic Obstinacy »
The feedback from field situations emphasizes that identifying a case as “unreasonable therapeutic obstinacy” is remarkably complex. The term is defined as “the useless or disproportionate nature of the treatments in question, but giving leeway to interpretation or uncertainties depending on the circumstances.” As the authors point out, it is challenging to “adapt to each situation and to foster the flow of communication in order to facilitate consensus“. In most cases, the medical team usually initiates the issue of restricting or stopping treatment, however in some cases the patients, or their families, persist in their opposition, convinced of doing the right thing: “and medicine finds itself ensnared by its own promise of promoting medical progress.”
Recent cases involving the young Marwa and Ines but also Vincent Lambert are notable examples of these tense conflicts. The recent report recommends creating a telephone access for professionals confronted with such cases, to be able to discuss with a qualified external consultant, a professional mediator or an expert in ethical issues.
In particular, acknowledging that artificial nutrition and hydration is a treatment that can be stopped is “a delicate issue which is problematic to execute “. This is especially relevant for the most vulnerable individuals, such as patients with Alzheimer disease, or those in a pauci-relational condition. As the French National Union of Cranial Injuries (“UNAFTC”) has pointed out, artificial nutrition and hydration “constitute an integral part of the therapeutic and life plan for these patients. Thus it cannot be considered as unreasonable obstinacy, unless otherwise expressed by the patient’s advance directives or witnessed by the designated person of trust, or in the absence of the family or relatives, or in the event of complications.”
Deep and continuous sedation until death
According to the hospital centers consulted, these requests are rare. A quantitative survey was launched by the National Center for Palliative and End-of-Life Care, which was challenged by the SFAP (French Society for Accompaniment and Palliative Care). More specific data should be available by the end of the year.
On March 15, 2018, the High Authority of Health (“HAS”) clarified the grey zones for implementing “deep and continuous sedation until death” by publishing recommendations and standard operating procedures. The authors were cautious to differentiate this exceptional type of sedation, from euthanasia, whose objective is to cause death. According to some teams interviewed, “this new right has fostered patient communication, sometimes leading to cancelling requests for euthanasia“. Several overall difficulties linger: “healthcare teams are expected to discern essential concepts such as refractory suffering, unbearable suffering, and life-threatening conditions in the short term, while also appropriately handling the current criteria for evaluation …»
As a conclusion, the rapporteurs insist that “each situation dealing with the end-of-life must always be considered as profoundly unique, painful and complex.»
