Developing a rights-based approach in long-term care

Governing Body Fellow Professor Mary Daly welcomed Dr Magdi Birtha of the Vienna-based European Centre for Social Welfare Policy and Research to the Care Initiative on Wednesday 1 February with Professor Jonathan Herring of Exeter College, University of Oxford as the respondent. They spoke about why a human rights-based approach is needed in long-term care policies across Europe and what practical tools could help in the development and assessment of policies to respond best to the social, economic and political challenges of an ageing population.

Magdi Birtha Jonathan Herring And Mary DalyLecture report

Green Templeton Dr Shanghavie Logan (Clinical Medicine, 2019) reports from the evening:

Dr Magdi Birtha’s focus was on a project undertaken by the European Centre for Social Welfare Policy to develop a rights-based approach in long-term care undertaken between 2017 and 2019 with support from the Swedish Ministry of Health and Social Affairs. This led to the team developing an index to assess the implementation of a rights-based approach to long-term care provision.

Dr Birtha’s focus was on a project undertaken by the Centre to develop a rights-based approach in long-term care undertaken between 2017 and 2019 with support from the Swedish Ministry of Health and Social Affairs. This led to the team developing an index to assess the implementation of a rights-based approach to long-term care provision (the so-called ROPI).

Despite a growing ageing population no specific convention for protecting older people’s rights exists, as is the case for other vulnerable populations. Dr Birtha pointed out that while there are ongoing discussions at the UN to create such a convention, barriers have been raised by some states around concerns regarding the financial burdens that may entail. Currently the convention rights of those with disabilities is used as the basis for discussions, but Dr Birtha highlighted that the two groups are not the same and rights focused specifically on the needs of older people need to be identified.

The conceptual framework developed by Dr Birtha and her team focused on desired outcomes of care provision, alongside the enabling processes and structural conditions that could support provision. The team also identified principles that should guide provision. These include dignity, autonomy and self-determination. These must be present throughout the journey of a person through care, from onset to their transition out of care, including end-of life care.

Following validation by experts, ten rights for people in long-term care settings were identified. These include freedom from torture, the right to privacy and family life, the right to equal access to and affordability of care, the right to choice, the right to equal capacity and decision making capacity, the right to participation and social inclusion, the right to the highest standard of health, and the right to remedy and redress. The team highlighted the importance of connecting an outcome with underlying policies. Therefore, they focused on identifying tools that not only assess outcomes but also encompass the underlying policies that lead to the outcomes.

On this basis, the project team developed the Rights of Older People index (ROPI), which has a composite focus on underlying structures such as policies and resources. It was piloted in Sweden, Poland, Slovakia and Austria and then tested in 8 further countries including the UK. The range of countries ensured that a variety of long-term care systems were assessed. The piloting and testing involved the collection of primary and secondary data, with standardised questionnaires shared with experts and relevant ministries.

An important finding was that all countries need to improve their provision as none received the highest score. But countries varied in the strength of their provisions across the ten dimensions. Overall Sweden scored highest and Italy, Switzerland and Poland the lowest.  The UK scored in the middle range.

Dr Birtha and her team have identified how ROPI and the scoreboard could be used in steering policy, identifying indicators to supplement existing frameworks, support disaggregation of indicators on basic socio-demographic variables and improve comparability in data collection. The team also developed a scoreboard that focused on quantitative outcomes. They posit that the tools in combination can guide states in fixing issues at structural levels, by assessing policies and outcomes in conjunction in an integrated way.

Professor Jonathan Herring, the DM Wolfe-Clarendon Fellow in Law at Exeter College, discussed some implications of the research for future care provision and identified the index as a good starting point to consider rights standards in a caregiving setting.

He went on to explore the ambiguity of the phrase ‘human rights’ and how it is perceived differently. From a legal standpoint, human rights could be considered entitlements that are legally stated and can be arbitrated by a court. However, a human rights approach does not allow us to focus on more nebulous moral goods which focus on a culture of respect as opposed to legally enforceable rights. This is a consideration of relevance for the ROPI, as freedom from torture is a relatively simple right to investigate from a legal standpoint but access to family life is much more difficult to determine. The point was made that there is no perfect solution but a mixture of both approaches could provide the best model to monitor long-term care provision, with the law having a role to create a space for morally good care.

Another point of discussion focused on whether care home residents should have the same rights as those not living in a communal setting. It was argued that rights of liberty and autonomy are often not feasible in communal settings and the nature of communal living means that clashes of rights will occur. Professor Herring posited the use of a communitarian model of rights as opposed to an individualistic model. This provoked interesting discussion, including the possible need to reconsider the concept of care homes if they cannot uphold fundamental rights such as autonomy.

This event provided a valuable platform for the discussion of a rights-based approach to long-term care and identified gaps in existing knowledge as well as weaknesses in practice. More work is needed to secure the rights of people receiving long-term care and enable countries to provide safe and compassionate care through a systems-wide approach.

About the Care Initiative

Green Templeton’s Care Initiative explores issues associated with care of older people by bringing together people from different disciplinary and professional backgrounds. It engages in informed debate and research around the complex issues involved in caring for and with older people. Its general field of interest lies in explicating the policy dimensions of care for older people and developing understanding of the linkages between social care and health care. More information

Created: 22 March 2023