Working Document on decesion-making process regarding medical treatment in end-of-life situations

Committee on Bioethics of the CoE launched public consultation on the Working Document on decesion-making process regarding medical treatment in end-of-life situations "to elicit comments, in particular from the sectors directly concerned (such as patients, physicians, other carers, families, bodies which/persons who may be involved in the decision-making-process regarding medical treatment in end of life)".


The scope of the Working Document focuses on end-of-life decision such as refusal or withdrawal of medical treament with due regard to previously expressed wishes. Euthanasia and assisted suicide is expressly excluded.

The Working Document consists of three main parts. The first deals with the ethical and legal frames related to the decision-maing process, namely the principles of autonomy, beneficence and non-maleficence and justice (under the name of equitable access to helath care as incorporated into Article 3 of the Convention on Human Rights and Biomedicine).

The second part identifies the parties involved in the decision-maikng process and highlights some of their role regarding the process. These parties are renging from the patient him/herself with the disctiction of being competent or not, through legal representatives, power of attorneys, surrogates and family members to the carers (doctor and the medical team).

Finally, the Working Document draws up the framework of the decision-making process regarding end-of-life situations and analyses the prossible roles of the parties involved and some technical and procedural aspects.

Article on "abortion on demand" and the case-law of the Court

from www.guardian.co.uk

Grégor Puppinck, director of the European Center for Law and Justice has published a guest article on EJIL: Talk! on ECtHR case-law concenring "abortion on demand". "The purpose of this article is firstly to identify the rationale of the Court on the matter of abortion, and secondly to observe how it applies to the vast majority of abortions practiced, i.e. “abortion on demand”, also called on request:  abortions that are not justified by a matter of health, life or rape, but by the free will of the woman." The article raises two main concerns of which I would like to reflect to:

Firstly, the author correctly emphasises - referring to A, B and C v. Ireland - that "States can allow it for the sake of competing rights guaranteed by the Convention". However he fails to recognise what the Court really said, namely that

there is indeed a consensus amongst a substantial majority of the Contracting States of the Council of Europe towards allowing abortion and that most Contracting Parties have in their legislation resolved the conflicting rights of the foetus and the mother in favour of greater access to abortion. [P. and S. v. Poland, 57375/08, § 97, 30 October 2012]

I think this is importan as Puppinck justifies his reasoning by some kind of grateful tolerance on behalf of the Court towards abortion. But this is not the case, the ECtHR only recognised the european consensus which shall be taken into account as a development within the legislation of the Member States of the CoE. This is not the grace of the Court since it cannot rule - ans this was the case of the former abortion judgments when it rejected to recognise some basic access rights to abortion services - against the will of the majority of the state.There shall also be reference to the judgment in Costa and Pavan v. Italy where the Court expressly emphasised the difference between a born child - as bearer of rights - and the unborn foetus or embryo. It stated as follows:

La Cour n’est pas convaincue par ces arguments. Tout en soulignant que la notion d’« enfant » ne saurait être assimilée à celle d’« embryon », elle ne voit pas comment la protection des intérêts évoqués par le Gouvernement se concilie avec la possibilité ouverte aux requérants de procéder à un avortement thérapeutique lorsqu’il s’avère que le fœtus est malade, compte tenu notamment des conséquences que cela comporte tant pour le fœtus, dont le développement est évidemment bien plus avancé que celui d’un embryon, que pour le couple de parents, notamment pour la femme [...]. [Costa and Pavan v. Italy, no. 54270/10, § 62, 28 August 2012]

Secondly, the author suggests a very terrifying solution for opposing abortion:

Possibly, one day a father or grand-parent of an unborn child will complain before the Court and succeed to save the life of their child. All that such a father or grandparent has to do is to fax a letter to the Court under article 39 of the Rules of the Court, requesting it to take urgent and interim measures in order to avoid the realization of a serious and imminent risk of breach of a fundamental right. All they have to do is to request that the rights to life (art. 2) and to physical integrity and dignity (art. 3) of their unborn child or grand-child be preserved, and that their right to family life (art. 8) be protected. The relatives of the unborn child could successfully obtain from the Court an order to suspend the procedure of abortion, if they demonstrate that this abortion is not justified by a proportionate motives guaranteed by the Convention; they may also inform the Court that they are ready to rear the child. This procedure has never been used yet to stop an abortion, but it could be an effective way to save lives. It would be in continuity with the original meaning of the Convention and with the Court’s own case-law.

The mentioned possibility envisages a very cruel and severe interference with the right to respect of private life of the pregnant woman, and - furthermore - represent a clearly sexist opinion towards reproductive rights of women.

The Principle of Respect for Human Vulnerability

The UNESCO"s International Bioethics Committe (IBC) published its report on The principle of Respect for Human Vulnerability. The document is a result of a five year work of the IBC, beginning with its 15th session in 2008 dealing with questions connected to Article 8 of the Universal Declaration on Bioethics and Human Rights which states as follows: "In applying and advancing scientific knowledge, medical practice and associated technologies, human vulnerability should be taken into account. Individuals and groups of special vulnerability should be protected and the personal integrity of such individuals respected."

Here are the introductory remarks by Stefano Semplici, chairperson of the IBC:

Article 8 of the Universal Declaration on Bioethics and Human Rights (2005) enshrines the principle of respect for human vulnerability and personal integrity as a bioethical value of universal concern to the Member States of UNESCO. The specific purpose of Article 8 is to address special vulnerabilities that occur, whether as a consequence of personal disability, environmental burdens or social injustice, in the contexts of healthcare, research and the application of emerging technologies in the biomedical sciences. This Report is the result of three years of reflection by the International Bioethics Committee of UNESCO (IBC).

We are definitely all equally entitled to meet our basic needs related to our health and well-being, but we are certainly not all equally and permanently able to meet all those basic needs of ours.

Over the course of its reflections, the Committee has investigated the multiple ethical implications of this very basic inequality among human beings which is particularly highlighted and exacerbated in the context of advances in the fields of biomedical sciences. As a matter of fact, these advances have opened the way for many new and powerful capacities for the safeguarding of human welfare, but they have also created mechanisms of exploitation and degradation which can take advantage of natural and context-related vulnerabilities.

Vulnerability, in its first and more general sense, is an essential feature of human nature and may therefore boost awareness of a common destiny and responsibility. This Report seeks to elaborate the scope and content of Article 8 of the Declaration of 2005, focusing on special vulnerabilities and taking into account conditions that, more or less directly, impinge upon the capacity to live as free and autonomous individuals; and on the right to live in a world where significant inequalities in the capacity to meet everyone’s basic needs are adequately addressed.

In writing this report, which is neither exhaustive, nor prescriptive, the ethicists, geneticists, biologists, lawyers, philosophers, psychiatrists, neurologists and immunologists composing the IBC aimed at paving the way for a broader reflexion and indicating possible lines of action not only for States, but also for individuals, groups, communities, institutions and corporations, public as well as private.

They specifically call on all concerned stakeholders to exercise great vigilance in protecting those who are especially vulnerable. Nearly every country of the world is the home of one or the other type of vulnerable groups: countries in which proper antiretroviral therapies are for various reasons not being provided to a majority of HIV/AIDS infected people; countries in which poor patients are refused healthcare because they lack insurance coverage; countries in which people are involved in clinical trials without respecting the principle of free and informed consent, just for the sake of profit. Unfortunately, the list is easy to extend.

Special Vulnerabilities of Women and Girls

Gender-related vulnerabilities and in particular the special vulnerabilities of women and girls have always been in the forefront of the Committee’s reflections throughout its work on this publication. Females, both children and women, are given special attention in the Report. Seven of the eighteen cases proposed for discussion specifically refer to the treatment of women in healthcare delivery,research and the applications of new biotechnologies. Female cases are prominent as they are particularly exposed to the whole range of the social, cultural, economic, educational and political determinants of vulnerability. This is also highlighted in one of the concluding paragraphs of the Report:

“A further important example of special vulnerabilities can be provided using the example of the position of women. In some cultures, female children are uniquely vulnerable to the risk of being unwanted, uncared for, abused and rejected. Female children may also find their interest in bodily integrity gravely threatened, including especially their right to be free from sexual assault and exploitation. Adult women may find themselves transferred from the patronage of their father to the patronage of their husband, thereby denying them the personal authority to make important life and healthcare decisions on their own behalf. As women live longer in many parts of the world, elderly women might find themselves abandoned by their families, subject to inadequate healthcare, and disregarded by society. Migrant women and women affected by war are especially vulnerable to abuse and are often disenfranchised from engaging in conflict resolution and reconciliation.”

Special Vulnerabilities in Africa

Human vulnerabilities that are present in developed countries are often exacerbated in developing countries, due to a wide range of factors, including extreme poverty. This is especially visible in the case of developing countries of sub-Saharan Africa. The Committee has consistently maintained this concern within its reflection on Article 8. This is particularly evident with the mention of three specific cases from Africa, even though the general practice is to remove specific regional or national references. Other cases highlight vulnerabilities of immediate relevance to the African context, while the remaining cases are applicable to fast emerging situations on the continent. In essence, all the possible remedies elaborated within the Report, from providing vulnerable populations with adequate health education and access to available therapies, to striving against poverty and strictly limiting the use of potentially discriminating incentives in medical research, have universal application across both developed and developing countries, but are especially pertinent to the African context.

Ultimately, the goal of our efforts in this regard is to inspire and stimulate all stakeholders, not only States, to take the necessary steps to protect the interests of vulnerable populations in the context of healthcare, research and the application of emerging technologies in the biomedical sciences; and to ensure the realization and enjoyment of human rights across all strata of society.

Csoma v. Romania

In the case Csoma v. Romania (Application no. 8759/05) the ECtHR found a violation of Article 8 of the ECHR in connection with the inefficient remedy provided for a victim of forced sterilisation Romania.

Csoma who worked as a nurse at the local hospital fell pregnant 2002. In the second trimester of the pregnancy a test showed that her foetus has hydrocephalus. After consulting her doctor, Dr. P.C., who worked in the same hospital as the applicant, she decided to have an abortion. For this reason she was admitted to the town hospital where she received medicationvia infusion to induce abortion, but to no avail. The next day, concentrated glucose was injected into her stomach with the same purpose after which the foetus stopped moving. After the injection  she developed fever but she was not seen by a doctor and was only given painkillers. The following morning her body expelled the foetus why lying still in her bed and she started bleeding profusely. The doctors could not stop the bleeding and she was diagnosed with disseminated intravascular coagulation (DIC). She was then transfered to another hospital where, due to her critical condition, the doctors had to remove her reproductive organs.

After consulting several specialits, the applicant lodged a complaint with the with the County College of Doctors. The College in its opinion found no direct link between the injection given to the applicant and the DIC. However it mentioned several deficiencies of the applicant's medical records, in particular the lack of: her wirtten informed consent, the ultrasound scans of the precise localisation of the placenta and the summary of lab test results.

In 2002 the applicant also lodged a criminal complaint against Dr P.C. based on the charges of grievous unintentional bodily harm and negligence in the conduct of a profession. She also stated that she joined a civil claim to her complaint as well. During prosecution two medical expert reporst were filed. In the first one, the forensic intstitute "concluded that no medical negligence had been committed, noting that the method chosen for inducing the abortion could be performed in any gynaecological hospital unit". The applicant lodged a complaint against this opinion and brought up several addition questions concerning the circumstances of the case. These question, however, remained unanswered. The second report reached the same conclusion but it also highlighted the missing documents from the applicants medical files. Based on these opinions the prosecutor decided not to bring criminal charges against Dr. P.C. in 2003. This decision was upheld by the supervising prosecutor and the county court as well. The prosecutor a couple of months later asked the Mina Minovici National Forensics Institute to review all the medical reports and to issue an opinion on the medical acts performed in the case. The Forensics Institute confirmed the conclusions of the first medical report and thus excluded any medical negligence. "It nevertheless observed that the doctor had failed to discuss the proposed procedure and the possible complications with the applicant and her family and to obtain her signature expressing her written consent to the proposed procedure."

The applicant - relying on Articles 2, 6 and 13 of the Convention - complained that

she had not been properly informed of the risks of the [abortion procedure apllied in her case] and that because of medical negligence her life had been endangered and she had become permanently unable to bear children. She considered that the investigation of the case had been superficial and that the forensic authorities had lacked impartiality in issuing the medical expert reports, leading to a situation in which she had not obtained recognition of the serious bodily harm inflicted on her and a guilty person had been protected.

Violation of Article 8

The Court however - referring to Pretty case - decided to examine the case under Article 8 of the ECHR. For doing so, it reiterated the applicable principles:

- Contracting States are under an obligation to introduce regulations compelling hospitals to adopt appropriate measures for the protection of their patients’ lives;

- Contracting States are bound to adopt the necessary regulatory measures to ensure that doctors assess the foreseeable consequences of a planned medical procedure and inform their patients of the consequences prior to the intervention in order to enable patients to give informed consent. The State Party concerned may be directly liable under Article 8 for the lack of information; and

- If the legal system of a State affords victims full access to civil proceedings or to disciplinary proceedings which may lead to liability for medical negligence being established and a corresponding award of compensation, this could in principle be sufficient to discharge the State’s positive obligation to provide an effective judicial system.

The ECtHR emphasized that domestic legislation expressly provided for the patient’s right to information and to give informed consent and for the doctor's obligation to obtain, informed consent prior to a medical procedure. However it could not find any explanation for why that consent was not obtained in the applicant's case. In this regard, the Court rejected the Government’s argument "according to which the fact that the applicant was a trained nurse dispensed the doctor from following established procedures and informing her of the risks involved in the procedure". The ECtHR found no reason for the urgent performing of the intervention. This question remained however unanswered since the medical reports filed during the prosecution did not deal with it.

The Court thereafter proceeded to examine whether the remedies at the applicant’s disposal were sufficient to provide her redress. It noted that - as the applicant attached a civil claim to her criminal complaint - she could have - in theory - obtained an assessment of and compensation for the damage, therefore this remedy was appropriate. The ECtHR thereafter proceeded to examine the investigation.It found in this regard that the prosecutor did not weigh the conflicting factual issues presented by the case: he did not take into account the medical expert report prepared for the College of Doctors, and also failed to take the opinion of the Forensics Institute.

 

The Court further examined the Government's claim that a civil action against the doctor and the hospital could have constituted an effective remedy. It noted that it would have been impossible for the applicant to raise the issue of medical negligence again in a new set of proceedings since -  at the time when the facts of the case occured - the system did not allow for a new forensic report to be commissioned if the Forensics Institute had already given its opinion. Taking into account the consistency with which the expert reports excluded the existence of medical negligence, the Court found that a civil claim would not have been an effective remedy. In relation with the ability for the applicant to seek compensation directly from the hospital, the ECtHR noted that - even if the domestic case law is developing - the domestic courts have not consistently established the liability of hospitals in cases of medical negligence.Therefore "[t]he lack of any fault in the hospital’s handling of the matter, coupled with the developing domestic case-law concerning hospitals’ liability for medical acts [...], renders an action for compensation against the hospital too weak a remedy to be deemed effective". Lastly, the Court found that in the present case that the applicant did not remain passive, nor was her sole goal to have the doctor criminally punished, as a consequence it would be disproportionate to require her to lodge yet another action with the civil courts.

The Court thereafter conclude that by not involving the applicant in the decision-making process regarding her medical treatment and by not informing her properly of the risks involved in the intervention, the applicant suffered an infringement of her right to private life. The system in place made it impossible for her to obtain redress for the infringement of her right, therefore the respondent State has failed to comply with its positive obligations under Article 8 of the Convention.

Comment on A, B and C v. Ireland

The American Universtiy International Law Review (Vol. 27, No. 2) published a comment "Reproductive Choice in the Hands of the State: The Right to Aboriton under the European Convention on Human Rights in Light of A, B & C v. Ireland" by Brynn Weinstein.

The Comment examines the reasoning of the ECtHR used in the case of A, B & C v. Ireland, particularly regarding A's and B's rights since the Court found violation of C's right. The author, however, points out the failures of the Court in applying - for example - the margin of appreciation test, the existence of "European consensus" in comparison with judgments such as Goodwin v. United Kingdom or Dudgeon v. United Kingdom.

Here is an exerpt of the introduction:

This Comment argues that the Court in A, B & C incorrectly assessed the right to health and well‐being under Article 8 of the Convention by misapplying the margin of appreciation test used to determine whether a State’s restriction on a fundamental right violates the Convention. In doing so, the Court improperly deferred to Ireland’s domestic legislation by granting Ireland a broad margin of appreciation – the ability to regulate a fundamental right guaranteed under the Convention. Specifically, this Comment argues that the Court incorrectly assessed Ireland’s margin of appreciation to restrict the right to health and well‐being by disregarding the sweeping nature of Irish abortion law and its effect on women’s health and well‐being, and by incorrectly examining European consensus on the issue. By finding that Ireland’s restrictive abortion laws successfully balance Ireland’s aim of protecting public morals and women’s right to health and well‐being, the Court in A, B & C significantly limited women’s right to privacy under the Convention.

Z. v. Poland

In the case Z. v. Poland (Application no.46132/08) the ECtHR found no violation of Article 2 of the Convention in relation with the investigation carried out by the Polish authorities concenring the untimely death of the applicant's pregnant daughter in a hospital.

The applicant Z. is living in Pilah in Poland. Her daugther, Y.became pregmnant pregnant. Prior to or early in her pregnancy she developed ulcerative colitis (UC). Y. began experiencing the symptoms (nausea, abdominal pains, vomiting and diarrhoea) of the disease which were recurrent and caused pain and discomfort to her. Between May and September 2004, the applicant's daughter was admitted to six hospitals in three different Polish cities. She was operated on a number of occasion but received only basic treatment. concerning the UC. On 4 September 2004 Y’s condition deteriorated. She was transferred to a hospital where - immediately following her admission - she was sent for a surgical operation to establish the cause of an apparent sepsis. During the operation the doctors removed her appendix. Y’s condition worsened, consequently she was transferred to the intensive care unit of the hospital. On 5 September the doctors removed the foetus, which was dead, ten day later the doctors removed her uterus. Y. died two weeks later as a result of septic shock.

On 1 March 2005 an investigation of possible unintentional homicide of the applicant’s daughter was opened. The investigation of Y.'s death was extended several times. It was suspended, on 26 May 2006. due to the need - expressed by the prosecutor - to obtain expert opinions. Subsequently six medical opinions were submitted to the prosecutor’s office. Altogether the prosecution obtained opinions from eight medical experts. The experts were subsequently heard by the prosecutor. During the prosecution at least six prosecutors handled the investigation at different stages. On 11 June 2008 the District Prosecutor resumed and discontinued the investigation. According to the decision "on the basis of the experts’ opinions [...] no direct link had been established between the treatment and the death of the applicant’s daughter". This decision was subsequently upheld by the district court.

Two disciplinary proceedings were launched - on May 2005 and 20 June 2005 - against the doctors who had treated Y. Both procedures were discontinued.

The applicant complained - citing Articles 2 and 13 of the Convention - that the doctors treating her daughter failed to provide her with adequate treatment. She also complained that no effective investigation was conducted which would have allowed the establishment of responsibility for her daughter’s death. Lastly, referring to the law governing objection on grounds of conscience, she maintained that the State had failed to adopt a legal framework which would have prevented the death of her daughter. In this regard the Court noted that

the first sentence of Article 2 enjoins the State not only to refrain from the intentional and unlawful taking of life, but also to take appropriate steps to safeguard the lives of those within its jurisdiction The Court accepts that it cannot be excluded that acts and omissions by the authorities in the field of health-care policy may in certain circumstances engage their responsibility under the positive limb of Article 2. However, where a Contracting State has made adequate provision to secure high professional standards among health professionals and the protection of the lives of patients, it cannot accept that matters such as an error of judgment on the part of a health professional or failure to coordinate by health professionals in the treatment of a particular patient, assuming such negligence to have been established, are sufficient of themselves to call a Contracting State to account from the standpoint of its positive obligations under Article 2 of the Convention to protect life.

The ECtHR therefore examined the facts of the case from the angle of the procedural requirement implicit in Article 2. In this connection the Court considered that "the investigation succeeded in elucidating the circumstances which were relevant to the issue of determining any responsibility on the part of the medical personnel for the death of the applicant’s daughter. It does not find any grounds to contest the findings of the investigation". It further observed that the only delay during the course of the prosecution was the rejection on behalf of the medical academies in Gdansk, Szczecin and Warsaw to give an opinion on the case. The Court also accepted the fact that the the medical questions involved in the case were of great complexity and required thorough analysis, consequently the period of two years and four months during which the case remained stayed  - and the prosecutor obtained six madical opinions - does not seem substantial. The ECtHR therefore considered that "the domestic authorities dealt with the applicant’s claim arising out of her daughter’s death with the level of diligence required by Article 2 of the Convention. Consequently, there has been no violation of Article 2 in its procedural aspect".

The Court declared the remainder of the application inadmissible.

***

An interesting - but disputed - fact of the case is the following: In August 2004 Y. was admitted to a hospital and was operated in relation with an abscess and rectovaginal fistula. Her doctors were aware of Y’s UC, her doctor however refused to perform a full endoscopy and no diagnostic imaging of the abdomen was performed on her. The applicant submitted that the doctor had justified not performing a full endoscopy by referring to his fear of endangering the life of Y.'s foetus. The doctor had stated - according to Z. - that his conscience did not allow him, but had not formalised his objection or directed Y to another doctor. THe Government argued this fact and the Court classified it as "Facts in dispute" and as a consequence did not examined it in depth.

Summary of I.G. and Others v. Slovakia and P. and S. v. Poland (Hungarian)

In the upcoming issue of Fundamentum, the Hungarian Human Rights Quarterly, you can find two summaries of I.G. and Others v. Slovakia and P. and S. v. Poland (the language is Hungarian).

The first is the last case in the row concerning forved sterilisation of roma women in Slovakia. In this case, just as in V.C. v. Slovakia and N.B. v. Slovakia, the Court found violation of Article 3 and 8. However, the ECtHR also made a progress regarding its case law as it also found violation of Article 3 in its procedural limb (unlike in the previous cases).

The other judgment concerns the lack of accessibility of abortion in Poland. This case can also be put in a row with former judgments such as Tyrer v. Poland. The Court found several violation ranging from: Article 3, 5, 8. 

The table of contents can be found here.