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
Open-Ended Working Group On Ageing,
9th Working Session, 23-26 July 2018
Long-term
care and palliative care
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:
Long-term care
3. Living
independently at any stage of life means the provision of all necessary support
to enable one to make decisions, perform actions of daily living and
participate in society in accordance with one’s will and preferences.
4. Support
is the act of providing help or assistance to someone who requires it to carry
out daily activities and participate in society. Knowledge about, access to and choice and
control over the support necessary to be able to live according to one’s will
and preferences is central to autonomy, dignity, and independence in older age.
5. There
is no specific right to support for independent living in older age in
international human rights law. A wide range of general provisions in
international human rights law are pertinent in long-term care settings but
their specific application in this area has yet to be fully explored. Article
19 of the Convention on the Rights of Persons with Disabilities 2006, which
explicitly guarantees the right to independent living for persons with disabilities
and includes provision of support services to enable such independent living,
applies only to older persons with disabilities.
6. Some
regional human rights standards recognise care and support for independent
living in older age. However, these vary and are inconsistent across regions.
Guiding Question 2
7. Older
persons’ choice and control over the support they require is often limited or
denied within current systems of long-term care. Support options available may
serve the system rather than the individual user’s needs and preferences.
Support is also often unavailable and may not be guaranteed under the law. Some
types of support, for example, personal assistance schemes, may be subject to
upper age limits and therefore not available to older persons. Support may also
be unaffordable or tied to particular living arrangements.
8. The
use of restrictive practices to manage behaviour in long-term care and support
settings, including within in-home care settings, is a particular concern. Common forms of restrictive practice
in long term care include: detention (e.g. locking a person in a room or ward
indefinitely); seclusion (e.g. locking a person in a room or ward for a limited
period of time); physical restraint (e.g. clasping a person’s hands or feet or
mis-use of equipment to stop them from moving); mechanical restraint (e.g.
tying a person to a chair or bed); and chemical restraint (e.g. giving a person
sedatives or other unnecessary medication to restrict or subdue behaviour). These
practices amount to violations of human rights.
9. Isolation, social exclusion, segregation and
loneliness can affect older persons regardless of their particular living
arrangements.
Guiding Question 3
10. Explicit,
legally binding international human rights standards are needed on older
persons’ right to affordable, appropriate, integrated, quality, timely,
holistic, care and support services which are adapted to their individual
needs, promote and protect their well-being and maintain their autonomy,
dignity, and independence, without discrimination of any kind.
11. The
right should extend to the provision of care and support services in all
settings, public and private, including but not limited to in the home, in the
community, and in residential settings.
12. Older
persons should have the right to the care and support services they require
independent of and unrelated to the income of their family members.
13. States
should take steps to ensure, inter alia, older persons:
·
Enjoy autonomy and
independence in the exercise of this right
·
Are able to participate
fully in the community and society
·
Have access to
effective complaints and redress mechanisms
·
Have access to
information about their health status and care and support services
14.
States should ensure that standards, professionalism, and quality of care and support
services are in line with human rights principles.
15.
States should ensure that older persons are not denied necessary and
appropriate care and support services based on their and/or their family’s
financial means. States should develop and implement policies to address public
and private financing of care and support services.
16.
States should ensure effective compliance mechanisms for complaints arising out
of a range of issues including pricing, quality, and the protection of human
rights in care and support.
Guiding Question
5: Palliative care
17.
Palliative care is an approach that seeks to improve the quality of life of
patients diagnosed with life-threatening illnesses through prevention and
relief of suffering. It also addresses the psychosocial, legal and spiritual
aspects associated with life-threatening illnesses and end-of-life care.
18.
While existing international human rights treaties do not specify a right to
palliative care, there is a growing body of authoritative interpretations and
“soft law” that establishes this right. Access to palliative care is both a
component of the right to the highest attainable standard of health and
implicates the right to freedom from torture, cruel, inhuman and degrading
treatment.
19.
Some regional human rights standards recognise the right to palliative care.
However, these vary and are inconsistent across regions.
20.
International human rights standards are needed on older persons’ right to
quality palliative care services that are available, accessible, and acceptable
without discrimination of any kind.
21.
The right should apply to holistic palliative care in all settings and should not
be limited to pain relief or any particular treatment or setting.
22.
States should take steps to ensure, inter alia:
·
Quality palliative
care services are available, accessible and acceptable for older persons in a
setting consistent with their needs, will and preferences, including at home
and in long-term care settings
·
Availability and
accessibility of essential medicines, including internationally controlled
essential medicines, for the treatment of moderate to severe pain, and for palliative
care of older persons
·
A range of
supports to exercise legal capacity, including the appointment of one or more
trusted persons to assist them to make decisions based on their instructions,
will and preferences, and the opportunity to make advanced directives, living
wills and other legally binding documents that set out their will and
preferences around medical interventions, palliative care and other support and
care at the end of life
·
Older persons are
able to express their free, prior and informed consent to their palliative care
treatment and any other health matters
·
Regulation and
monitoring of compliance of all palliative care providers with professional
obligations and standards.
