Respecting the autonomy of the living and dying

2020 ◽  
Vol 28 (4) ◽  
pp. 379-385
Author(s):  
Jill Stavert
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Human Rights ◽  
International Human Rights Law ◽  
Advanced Dementia ◽  
Persons With Disabilities ◽  
Content Type ◽  
Care And Support ◽  
Recent Developments ◽  
Care And Treatment

PurposeThe purpose of this study is to inform those who are supporting persons who are dying and are responsible for planning, commissioning or delivering palliative care about the need to support and maximise the decision-making ability and choices of persons with advanced dementia or severe frailty.Design/methodology/approachThis article will consider the legal and human rights principles applicable to Scotland, and indeed to other jurisdictions, which govern decisions about care and treatment of persons with and without capacity and the application of these principles to palliative care situations.FindingsIt is important that those involved in the care and support of the dying are fully aware of the need to support and maximise their decision-making ability concerning palliative care and treatment choices.Research limitations/implicationsIt is a well-established legal and human rights principle that the decisions of a person with capacity must be respected, including decisions about palliative care and treatment at the end of life. Moreover, recent developments in international human rights law reinforce the message that this principle applies equally to all. Applying this principle into persons with advanced dementia or severe frailty therefore requires skilled assessment and supported decision-making in order to optimise capacity and respect autonomy.Originality/valueThe discussion applies the United Nations Convention on the Rights of Persons with Disabilities approach concerning equality of rights enjoyment and supported decision-making to palliative care and treatment situations.

From Substitute to Supported Decision-Making: Participatory Action Research on the Convention on the Rights of Persons With Disabilities

2021 ◽  
pp. 104420732110554
Author(s):  
Benoît Eyraud ◽  
Iuliia Taran
Keyword(s):  
Decision Making ◽  
Human Rights ◽  
Action Research ◽  
Participatory Action Research ◽  
Lived Experience ◽  
Participatory Action ◽  
Persons With Disabilities ◽  
Care And Support ◽  
Health And Social Care ◽  
The Relationship

In this article, we present findings from a participatory action-research program in France on the exercise of human rights and supported and substitute decision-making, inspired by the United Nations Convention on the Rights of Persons with Disabilities (“CRPD”). Bringing together persons with the lived experience of disability, academics, and health and social care and support professionals, the project used the method of “experience-based construction of public problem” to transform experience into collective expertise. This enabled the exploration of support that people in vulnerable situations, whose capacity to exercise their human rights has weakened, need to make decisions in their lives and participate meaningfully in public debate. The relationship between the awareness of rights and exercise of rights is discussed. We argue for the need to balance out the positions of different contributors in participatory action research, in a reasoned manner, by recognizing the scientific and citizen-based participation of all partners.

scholarly journals Physicians’ decreased tendency to choose palliative care for patients with advanced dementia between 1999 and 2015

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Saila Haapasalmi ◽  
Reetta P. Piili ◽  
Riina Metsänoja ◽  
Pirkko-Liisa I. Kellokumpu-Lehtinen ◽  
Juho T. Lehto
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Legal Protection ◽  
Postal Survey ◽  
Advanced Dementia ◽  
Background Factors ◽  
Physician Decision Making ◽  
Care Approach ◽  
Life Threatening ◽  
The Impact

Abstract Background Physicians’ decision-making for seriously ill patients with advanced dementia is of high importance, especially as the prevalence of dementia is rising rapidly, and includes many challenging ethical, medical and juridical aspects. We assessed the change in this decision-making over 16 years (from 1999 to 2015) and several background factors influencing physicians’ decision. Methods A postal survey including a hypothetical patient-scenario representing a patient with an advanced dementia and a life-threatening gastrointestinal bleeding was sent to 1182 and 1258 Finnish physicians in 1999 and 2015, respectively. The target groups were general practitioners (GPs), surgeons, internists and oncologists. The respondents were asked to choose between several life-prolonging and palliative care approaches. The influence of physicians’ background factors and attitudes on their decision were assessed. Results The response rate was 56%. A palliative care approach was chosen by 57 and 50% of the physicians in 1999 and 2015, respectively (p = 0.01). This change was statistically significant among GPs (50 vs 40%, p = 0.018) and oncologists (77 vs 56%, p = 0.011). GPs chose a palliative care approach less often than other responders in both years (50 vs. 63% in 1999 and 40 vs. 56% in 2015, p < 0.001). In logistic regression analysis, responding in 2015 and being a GP remained explanatory factors for a lower tendency to choose palliative care. The impact of family’s benefit on the decision-making decreased, whereas the influence of the patient’s benefit and ethical values as well as the patient’s or physician’s legal protection increased from 1999 to 2015. Conclusions Physicians chose a palliative care approach for a patient with advanced dementia and life-threatening bleeding less often in 2015 than in 1999. Specialty, attitudes and other background factors influenced significantly physician decision-making. Education on the identification and palliative care of the patients with late-stage dementia are needed to make these decisions more consistent.

scholarly journals Children with learning disabilities and their participation in judicial procedures – what can disability advocacy offer?

2017 ◽  
Vol 22 (1) ◽  
pp. 10-15 ◽  
Author(s):  
Gábor Petri
Keyword(s):  
Human Rights ◽  
Learning Disabilities ◽  
Design Methodology ◽  
Access To Justice ◽  
Self Advocacy ◽  
Persons With Disabilities ◽  
Content Type ◽  
Rights Of The Child ◽  
Judicial Procedures ◽  
Article 5

Purpose The purpose of this paper is to provide a commentary on the paper titled “The Zone of Parental Control, The ‘Gilded Cage’ and The Deprivation of a Child’s Liberty: Getting Around Article 5”. Design/methodology/approach This paper uses the original article as a jumping off point to assess what aids advocacy organisations and human rights instruments can give to children with learning disabilities who enter legal procedures. Findings Existing human rights laws such as the UN Convention on the Rights of the Child and the UN Convention on the Rights of Persons with Disabilities provide innovative principles to reviewing existing policies, but little practical guidance is given to real implementation. Disability advocacy is ambiguous towards the question of representation of children with learning disabilities. Originality/value Literature on self-advocacy and especially on the self-advocacy and self-representation of children with learning disabilities is very limited. Access to justice for children with learning disabilities is similarly under-researched and is rarely addressed in disability advocacy.

Human rights violations during the COVID-19 pandemic

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Mohammed R.M. Elshobake
Keyword(s):  
Health Care ◽  
Human Rights ◽  
Freedom Of Expression ◽  
Human Rights Violations ◽  
International Human Rights Law ◽  
Human Rights Law ◽  
International Human Rights ◽  
Content Type ◽  
International Human ◽  
The Right

Purpose The purpose of this paper is to explore the most prominent human rights violations during the COVID-19 pandemic in accordance with international human rights law. Design/methodology/approach Through doctrinal and legal study and content analysis, this paper analyses the important relevant legal provisions under International human rights law and applies these provisions to the reality of managing the COVID-19 crisis to identify the most prominent human rights violations during the COVID-19 outbreak. This research paper considered as a review paper in that it provides a review of the most prominent measures taken during the COVID-19 crisis, which constitutes violations of international human rights law. Findings It is concluded that some measures that have been taken by countries to confront the COVID-19 pandemic have constituted violations of human rights and did not comply with the legal conditions to restrict human rights. Indeed, the COVID-19 pandemic has shown the ugly fractures in health-care systems, health inequities, racism and discrimination, Undermining the right to freedom of expression and the right to access information, gross negligence in protecting detainees from COVID-19 infection, all of these constitute clear violations of the principles of international human rights law. Research limitations/implications The spread of COVID-19 has not stopped, and its effects still continue, including human rights violations. Therefore, this paper cannot enumerate all human rights violations that occur during the spread of COVID-19. Practical implications Based on the results in this paper, governments need to be more prepared to face any health crisis at all levels including health care, which would reduce human rights violations. Social implications This research paper reflects positively on the social reality, as the adoption of its recommendations leads to the provision of adequate health care to all members of society in accordance with the principles of human rights, granting them the right to access information, protecting their right to freedom of expression, reducing the phenomenon of racism and discrimination and providing adequate health care to all detainees. Originality/value This paper studies an up-to-date topic that we are still living and seeing its effects. The benefit of this paper is to provide recommendations that protect human rights during the COVID-19 pandemic.

Art.23 Respect for Home and the Family

2018 ◽  
Author(s):  
Fiala-Butora János
Keyword(s):  
Human Rights ◽  
Family Life ◽  
Intimate Relationships ◽  
International Human Rights Law ◽  
Human Rights Law ◽  
International Human Rights ◽  
Persons With Disabilities ◽  
The Family ◽  
United Nations Convention ◽  
The Right

This chapter examines Article 23 of the United Nations Convention on the Rights of Persons with Disabilities. The right to family life and its various components have long been recognized by international human rights law and in regional human rights instruments. Despite this long tradition of protecting the family in human rights law, persons with disabilities have long been subject to serious violations of their right to family life. The prevailing stereotype has considered persons with disabilities asexual, which has led to the denial of their sexual autonomy. The right to family life also encompasses all forms of relationships and parenthood. To be truly equal members of society, persons with disabilities must achieve equality of opportunity in these areas as well. This requires significant attitudinal change, empowerment, dismantling of barriers, and support to experience intimate relationships.

scholarly journals ‘Too High’, ‘Too Low’, or ‘Just Fair Enough’?

2019 ◽  
Vol 17 (2) ◽  
pp. 351-368
Author(s):  
Joanna Nicholson
Keyword(s):  
Decision Making ◽  
Human Rights ◽  
International Criminal ◽  
Fair Trial ◽  
International Human Rights Law ◽  
Criminal Courts ◽  
International Human Rights ◽  
International Human ◽  
The Right ◽  
Human Rights Standards

Abstract That an accused receives a fair trial is essential to the legitimacy of international criminal courts and tribunals. However, how best to interpret the right to a fair trial in order to maximize the legitimacy of international criminal courts and tribunals’ decision-making? Some argue that international criminal courts and tribunals should aspire to the highest standards of fairness and should aim to set an example for domestic courts in this regard. Others argue that the unique context within which international criminal courts and tribunals operate allows them, at times, to interpret the right to a fair trial in a way which falls below minimum international human rights standards. This article examines both of these positions and finds both to be problematic. Rather, the article argues that international criminal courts and tribunals should aim for a middle path, the ‘fair enough’ standard, when interpreting the right to a fair trial. In situations where a different standard than that found within international human rights law is applied, international criminal courts and tribunals should expend greater effort in being open and clear as to why this is so, and should take care in communicating this to their audience, including victims and the accused. By doing so, the legitimacy of their decision-making will be enhanced.

Human Rights and the Arctic

2009 ◽  
Vol 1 (1) ◽  
pp. 233-243
Author(s):  
Gudmundur Alfredsson
Keyword(s):  
Human Rights ◽  
Indigenous Peoples ◽  
The Arctic ◽  
International Human Rights Law ◽  
Human Rights Law ◽  
Independent State ◽  
The Status ◽  
Recent Developments ◽  
The Many ◽  
The Right

Abstract This article surveys some of the many international human rights law issues that come up in connection with the Arctic, such as the rights of indigenous peoples and the formulation of these rights in a draft Nordic Sami Convention. The focus, however, is on recent developments concerning the status of Greenland as a result of an agreement concluded in 2008 between the Danish and Greenlandic authorities. This agreement foresees not only a significant increase in self-government but also opens the door for the Greenlandic people to create an independent State through the exercise of the right to external self-determination as a matter of political decolonisation of an overseas colonial territory.

Human Rights in Germany – A View from Germany's National Human Rights Institution

2016 ◽  
Vol 44 (1) ◽  
pp. 50-58
Author(s):  
Beate Rudolf
Keyword(s):  
Human Rights ◽  
Added Value ◽  
International Human Rights Law ◽  
Persons With Disabilities ◽  
The Right To Privacy ◽  
National Human ◽  
Human Rights Treaties ◽  
Protection Of Human Rights ◽  
The Right ◽  
The Relationship

AbstractThis paper discusses the protection of human rights in Germany through the interplay of constitutional law and international human rights law. It also explores the relationship between specialized human rights treaties on the rights of women, children, and persons with disabilities with “general” human rights treaties and their added value. It will highlight current human rights issues, such as the treatment of refugees, the protection against racist discrimination, and the right to privacy in the digital age.

International human rights law: a selected annotated bibliography

2015 ◽  
Vol 29 (6) ◽  
pp. 2-8
Author(s):  
Amy Burchfield
Keyword(s):  
Human Rights ◽  
General Public ◽  
Annotated Bibliography ◽  
International Human Rights Law ◽  
Human Rights Law ◽  
International Human Rights ◽  
Content Type ◽  
Wide Range ◽  
International Human ◽  
Just Society

Purpose – This selected annotated bibliography guides users to print and online tools for researching international human rights law. Design/methodology/approach – To research international human rights law, users may need to access a wide range of resources that represent varying levels of depth and analysis. Thus, this selected annotated bibliography reviews a selection of dictionaries, handbooks, nutshells, encyclopedias, guides and Web sites that will be useful to scholars, students, practitioners and the general public. The results of a trial search for information on the women’s human rights are included for each resource. Findings – As recent world events such as the Arab Spring and the Syrian Civil War make headlines, the need for understanding international human rights law continues to be essential to life in a just society. The resources reviewed here help researchers, practitioners and the general public better understand the human rights implications of the events happening around them today, as well as past events. Originality/value – This is an original bibliography that aims to select and review tools for researching international human rights law from a variety of types and formats. It may be valuable to librarians working in academic, school and public libraries who handle questions about human rights, legal issues and world events.

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