Joint submission by AGE Platform
Europe, HelpAge International, The Law in the Service of the Elderly and the
National Association of Community Legal Centres Australia[1]
Open-Ended Working Group On
Ageing, 9th Working Session, 23-26 July 2018
Autonomy
and independence
Authors
1.
This joint submission is authored by Robin Allen
(Cloisters), Andrew Byrnes (Australian Human Rights Institute, Faculty of Law,
University of New South Wales), Israel (Issi) Doron (University of Haifa), Nena
Georgantzi (AGE Platform Europe / National University of Ireland Galway), Bill
Mitchell (National Association of Community Legal Centres, Australia) and
Bridget Sleap (HelpAge International). Our views do not necessarily reflect the
broad and consensual positions of the organisations we represent, which will be
submitted separately.
Context
of Response
2.
This response addresses the guiding questions from a global perspective.
It is an executive summary of a more comprehensive statement which will be
provided to the 9th working session.
Guiding Question 1
3.
Autonomy is the ability to make
choices and decisions, including with support if necessary, according to one’s
conscience, values, will and preferences.
4.
Independence is the ability to
perform actions of daily living and participate in society in accordance with
one’s will, values and preferences.
5. Whilst
the right to equal recognition before the law and the right to a family and
private life are enshrined in international human rights law, there are no
explicit standards on autonomy and independence in older age in international
human rights law.
6. Some
regional human rights standards recognise the right to autonomy and
independence in older age. However, these vary and are inconsistent across
regions.
Guiding Question
2
7. Autonomy
is both an underlying principle that governs every human right and a right in
and of itself. The principle of autonomy presumes that individuals are able to
make choices according to their own will and preferences. In order to make
autonomous decisions, and for these decisions to be legally effective, the law
requires that the individual has the legal capacity to do so. To enjoy their right to autonomy, therefore,
older persons must enjoy legal capacity and equal recognition before the law on
an equal basis with others.
8. Independence
does not necessarily mean living alone or carrying out all daily activities by
or for oneself. Rather independence is having choice and control over decisions
about one’s own life, including control over decisions which lead to the
execution of tasks that someone else carries out. To enjoy their right to
independence, older persons must enjoy their right to care and support for
independent living.
Guiding Question
3
9. Older
persons are subjected to ageist attitudes that devalue, discount or ignore
their views and choices, or assume they can no longer make, and are thereby
denied the opportunity to make, decisions for themselves.
10. Older
persons may be denied their autonomy and independence in any aspect of life
including decisions about their care and support services; leisure time;
property; income; finances; place of residence and living arrangements;
personal, family and private life, including sexual and intimate relationships;
and political participation.
11. Concerns
have also emerged around the denial of older persons’ free and informed consent
in areas such as medical treatment, restrictive interventions and practices,
and end of life care and treatment.
12. A
paradigm shift is required away from this and to the presumption that older
persons can exercise their autonomy and independence through choice and control
over decisions in their lives in line with their will and preferences. The best
safeguard for autonomy, independence and legal capacity is respect for will and
preferences.
13. This
paradigm shift requires us also to change the social construction of human
dignity in older age whereby dignity in older age is not centred around
protection, intervention and professional care in the ‘best interest’ of the
older person. Rather, dignity in older age means respecting autonomy and
ensuring independence in older age. The use of the ‘best interests’ principle
in respect of adults is not a safeguard that complies with international human
rights norms.
Guiding Question
5
14. International
human rights standards are needed on older persons’ right to freedom of
personal autonomy and legal capacity to make decisions, to determine their life
plans and to lead autonomous and independent lives in line with their will and
preferences and on an equal basis with others. This includes the right to have
those decisions respected.
15. The
right should apply to all aspects of life.
16. The
right should include the right to:
·
Interact with
others and full, effective and meaningful participation in family, social,
cultural, economic, public and political life and educational and training
activities
·
Live
independently in the community on an equal basis with others (More detail on
the right to care and support for independent living is included in our
submission on long-term care.)
·
Choose where,
with whom, and how to live their lives and not to be obliged to live in any
particular living arrangement. When older persons choose to live in shared
residential settings, their rights to autonomy and independence must be
respected.
17. Standards
are also needed on the right of older persons to legal capacity at all times
and the right to equal recognition before the law on an equal basis with
others.
18. The
right should apply to all aspects of life.
19. The
right should include the right to:
·
Designate one or
more trusted persons to assist them to make decisions based on their
instructions, will and preferences
·
Make advance
directives to express their will and preferences in advance
·
Participate in,
and challenge, any decisions that interfere with the exercise of their legal
capacity.
