The ethical issues linked to the use of assistive technology in dementia care
- Annex 1 – Examples of ethical principles in legal documents and various conventions
- Annex 2 – Techniques to help come to a decision
The principles of dignity and privacy can be found in the constitutions of several countries, examples of which include:
Article 22 [Privacy
Article 10 [Human Dignity, Human Rights]
(1) The dignity of the person, the inviolable rights which are inherent, the free development of the personality, respect for the law and the rights of others, are the foundation of political order and social peace. (…/…)
Article 18 [Honour, Privacy, Home, Secrecy of Communication]
(1) The right of honour, personal, and family privacy and identity is guaranteed.
95. The state protects the honour and dignity of persons. Such behaviour against a person as torture, other cruelty or abasement of dignity is prohibited. No one may be subjected to a punishment which is merciless or debasing to the dignity of a person.
We, the citizens of the Czech Republic in Bohemia, Moravia and Silesia,
This right may be restricted only in cases specifically provided by a law.
(2) No one shall be subjected to torture or cruel, inhuman or degrading treatment or punishment.
(1) Everyone shall have the right to maintain and protect his or her dignity,honour, reputation and good name.
(2) Everyone shall have the right to be free from unjustified interference in his or her private and family life.
(3) Everyone shall have the right to be protected against unjustified collection, disclosure and other misuse of his or her personal data.
European and International Conventions and Declarations
References to ethical principles can also be found in the United National Universal Declaration of Human Rights, the European Convention on Human Rights and the European Convention on Human Rights and Biomedicine.
Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine (Council of Europe, Oviedo, 4.IV.1997)
Convinced of the need to respect the human being both as an individual and as a member of the human species and recognising the importance of ensuring the dignity of the human being;
Conscious that the misuse of biology and medicine may lead to acts endangering human dignity; (…/…)
Resolving to take such measures as are necessary to safeguard human dignity and the fundamental rights and freedoms of the individual with regard to the application of biology and medicine,
Article 1 – Purpose and object
Parties to this Convention shall protect the dignity and identity of all human beings and guarantee everyone, without discrimination, respect for their integrity and other rights and fundamental freedoms with regard to the application of biology and medicine.
Article 10 – Private life and right to information
- Everyone has the right to respect for private life in relation to information about his or her health.
- Everyone is entitled to know any information collected about his or her health. However, the wishes of individuals not to be so informed shall be observed.
- In exceptional cases, restrictions may be placed by law on the exercise of the rights contained in paragraph 2 in the interests of the patient.
Article 11 – Non-discrimination
Any form of discrimination against a person on grounds of his or her genetic heritage is prohibited.
Universal Declaration of Human Rights
(adopted by the United Nations General Assembly on 10 December 1948)
Whereas recognition of the inherent dignity and of the equal and inalienable rights of all members of the human family is the foundation of freedom, justice and peace in the world,
All human beings are born free and equal in dignity and rights. They are endowed with reason and conscience and should act towards one another in a spirit of brotherhood.
Everyone has the right to life, liberty and security of person.
No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment.
All are equal before the law and are entitled without any discrimination to equal protection of the law. All are entitled to equal protection against any discrimination in violation of this Declaration and against any incitement to such discrimination.
Convention for the Protection of Human Rights and Fundamental Freedoms (Council of Europe, 1950, came into force in 1953)
Article 3. Prohibition of torture
No one shall be subjected to torture or to inhuman or degrading treatment or punishment.
Article 5. Right to liberty and security
- Everyone has the right to liberty and security of person. No one shall be deprived of his liberty save in the following cases and in accordance with a procedure prescribed by law.
Article 8. Right to respect for private and family life
- Everyone has the right to respect for his private and family life, his home and his correspondence.
The enjoyment of the rights and freedoms set forth in this Convention shall be secured without discrimination on any ground such as sex, race, colour, language, religion, political or other opinion, national or social origin, association with a national minority, property, birth or other status.
The European Social Charter (revised) (Council of Europe, 1996)
Disabled persons have the right to independence, social integration and participation in the life of the community.
Article 23 – the right of elderly persons to social protection
– to enable elderly persons to choose their life-style freely and to lead independent lives in their familiar surroundings for as long as they wish and are able, by means of:
a provision of housing suited to their needs and their state of health or of adequate support for adapting their housing;
b the health care and the services necessitated by their state;
– to guarantee elderly persons living in institutions appropriate support, while respecting their privacy, and participation in decisions concerning living conditions in the institution.
Part V, Article E, Non-discrimination
The enjoyment of the rights set forth in this Charter shall be secured without discrimination on any ground such as race, colour, sex, language, religion, political or other opinion, national extraction or social origin, health, association with a national minority, birth or other status.
International Covenant on Economic, Social and Cultural Rights (United Nations, 1966, entered into force in 1976)
Considering that, in accordance with the principles proclaimed in the Charter of the United Nations, recognition of the inherent dignity and of the equal and inalienable rights of all members of the human family is the foundation of freedom, justice and peace in the world,
Recognising that these rights derive from the inherent dignity of the human person,
- All peoples have the right of self-determination. By virtue of that right they freely determine their political status and freely pursue their economic, social and cultural development.
2. The States Parties to the present Covenant undertake to guarantee that the rights enunciated in the present Covenant will be exercised without discrimination of any kind as to race, colour, sex, language, religion, political or other opinion, national or social origin, property, birth or other status.
Oppenheimer (1991) suggests that by following a line of reasoning through to its logical extremes and analysing the problem in different ways (including considering it from different perspectives), it is possible to see whether possible conclusions are “in accord with moral intuition”. Before doing this, other non-ethical issues linked to the situation need to be identified and acknowledged.
Whilst it is not advisable to just go along with your gut feeling, a nagging feeling that something simply isn’t right should indicate the need for further reflection.
It may help to think of a role model (e.g. a former teacher, your mother or a more public figure) and then imagine what they would think about your proposed decision.
Alternatively, you could imagine how you would feel about your reasoning and decision being made public (e.g. through a newspaper article or your friends and neighbours discussing it) (HENT, 2002). This doesn’t mean that you should be influenced in your decision by what others might think but that you should hopefully feel comfortable with the reasoning behind your decision.
Visualising the problem
It may be help to put your thoughts down on paper. This allows you to think about the issue, leave it for a while and then come back to it and consider it anew. It also helps make sure that you haven’t overlooked something. Some people make sense of things better in visual form. A few points jotted down or sketched may also serve as useful memory aids when discussing issues with people with dementia, and can be a good way to get people talking about the issue. Here are a few examples:
Drawing a rich picture
A rich picture is a diagram containing words, images, cartoons and symbols, linked to the main theme which is usually placed in the middle. Although they originated in the context of managerial decision making as a starting point for understanding human activity systems (Checkland, 1981, Checkland and Scholes, 1990), rich pictures can be drawn to describe processes, events, concepts and problematic situations, such as making an ethical decision. The important issues can be highlighted and links between the various issues can be shown. Making a rich picture is an iterative process which involves trying to understand a situation and refining that understanding. The picture may highlight contradictions, different perspectives and missing information (Monk and Howard, 1998). The following is an example of a rich picture about energy usage.
(Source: Open University)
Figure 1: Example of a rich picture
The ethical grid
Another approach is to look at ethical dilemmas as if they were part of a spider’s web, with each idea being linked to the others by a series of routes. Seedhouse (1998) displayed this graphically as a grid with four concentric layers (which could also be considered as looking down on a pyramid). The outer (bottom) layer represents organisational issues, the next outcomes for different people involved, the one above that, general principles and finally at the top, factors closely linked to the individual.
Figure 2: Seedhouse’s ethical grid (in Stutchbury and Fox, 2009)
Spray diagrams and mind maps
Rich pictures and the ethical grid might be particularly useful tools for starting a group discussion and getting input and different perspectives from others (e.g. in family meetings or staff meetings). If you just want to jot down your own ideas, there are a few simple possibilities.
Spray diagrams are simple ways of presenting different arguments, looking at the relationships between ideas, whereas mind maps, which are quite similar, are more about brainstorming on your own and just getting your ideas down on paper, even in a relatively unstructured way. The following diagram and the rich picture above were provided by the Open University and guidelines for constructing such a diagram can be found at: http://systems.open.ac.uk/materials/T552/
(Source: Open University)
Figure 3: An example and explanation of a spray diagram
The techniques described above are useful tools which can be used in the context of the whole decision-making process. On the next two pages, you will find flowcharts which provide an overview of the decision-making process. These are just two perspectives on how to approach ethical decision making but they may be of some help in organising your ideas and planning your course of action.
The first flowchart was developed in the context of the Technology, Ethics and Dementia (TED) project (Bjørneby, Topo and Holthe, 1999). It is specifically aimed at ethical decision making in the context of dementia and technology and is based on the experience of the partners in the TED project. The flowchart provides concrete steps on how to decide on the appropriate and ethical use of AT starting with the initial assessment of the living situation of the person with dementia continuing right up to the point of the assessment of the final solution once implemented. As such, it is less about ethical dilemmas and more about how to avoid them.
The second flowchart is an amended version of one developed by the American Speech-Language-Hearing Association (2010). It represents a more general approach to ethical decision making and handling ethical dilemmas.
In both cases, at every step of the way, the opinions of the person with dementia should be respected
- Describe the living circumstance of the person with dementia
- Analyse the needs of the person with dementia
- Identify the problems that need to be solved
- Identify potential technology and alternatives
- Consider ethical dilemmas and issues
- Assess and recommend
- Choose solutions and decide
- Implement chosen solutions
- Assess result
Figure 4: Steps in the decision process (Bjørneby, Topo and Holthe, 1999)
Figure 5: Flowchart of the ethical decision making process (adapted from the American Speech-Language-Hearing Association flowchart, 2010)
Last Updated: lundi 23 avril 2012