In the right circumstances, residential long-term care can have enormous benefits for individuals – socially, psychologically and physically. Getting the circumstances right is easier said than done, however.

Human rights relevant to long-term care admission

Research shows that residents tend to have better outcomes if they have had the opportunity to input into the decision to enter residential care, to select the care home and discuss their care plan with the director and staff of the care home.

In contrast, “emergency”, or short notice admissions (e.g. following a fall, the onset or deterioration of dementia or cognitive impairment or a stroke) can have negative implications, not just in ensuring the individual’s input into the decision, but also in terms of medication management, increased risk of falls, and limited input into their care plan.

European research has found that almost half of older people are admitted to nursing homes at short notice. Fortunately, human rights standards protect individuals in need of long-term care at this critical moment, and provide guidance to care providers to make sure that the transition to residential care is rights-based for each individual.Although there is currently no explicit right to long-term care articulated in any binding human rights convention, the international human rights framework strongly protects the right of older persons to access health and medical care as required.

All individuals have a right to the highest attainable standard of physical and mental health. This means that a sufficient quantity of healthcare services (e.g. hospitals, clinics, medicines, and doctors’ services) must be accessible and of good quality for everyone, on an equitable basis, where and when needed. In particular, states need to recognise and provide for the specific needs of groups that generally face particular health challenges, such as higher mortality rates or vulnerability to specific diseases, including older persons.

Even in times of times of severe resource constraints, States must protect the most disadvantaged and marginalized members or groups of society and must always provide the required healthcare to individuals who cannot afford to pay for it.

The UN’s Convention on the Rights of Persons with Disabilities (CRPD) also provides for persons with disabilities (including older persons in need of long-term care) to live independently in the community, with the choice of where and with whom to live, and the support to allow them to do so. This means that all older Europeans (with the exception of individuals living in Ireland, which has not yet ratified the CRPD) have the right to refuse to enter into a residential long-term care setting if they would prefer not to.

Other human rights offer protection to an individual making the transition to long-term care, including the right to choose and be part of the decision-making process, have access to information (in accessible formats), the right to dignity and privacy. The right to a private life also encompasses an individual’s relationship with others, which is particularly important in the context of long-term care, as residents often rely on others to facilitate contact with family and friends.

Care providers are required to take reasonable steps to help those in their care maintain contact with family members and accommodate spouses or same sex couples who wish to live together and continue their relationship in the home. The right to privacy is a qualified right, indicating that interference with these rights is allowed in special circumstances.

Admission to residential care: human rights obligations of policy-makers and care providers in practice

• You are not obliged to accept every individual that applies for a place in your care home, but you are obliged to abide by human rights standards (and local laws) on non-discrimination.

Waiting lists should be maintained on the basis of fairness, urgency and transparency, according to evidence based medical criteria which include the individual’s condition and risk factors, emotional and psycho-social criteria and their quality of life.

Need and urgency should never be determined on the basis of race, religion, gender or other non-medical status. It should not be acceptable to buy or exert influence to move up a waiting list. Anyone placed on the waiting list must be eligible, based on the care home’s admission criteria, or that of the State.

• You must ensure each individual has given informed consent to be admitted into the residential care setting, and has been given information about the care home in order to make an informed choice, including payment.
• You must take reasonable steps to help each individual maintain contact with family members and accommodate spouses or same sex couples who wish to live together and continue their relationship in the home.
• An individual care plan should be made for each resident at the earliest opportunity.
  The resident has the right to participate in the planning process and their wishes and needs taken into account. Care plans should include measurable objectives and timeframes.
• Residents should always be treated with dignity and respect.

Guidance for older persons on selecting a long-term care provider

• Examine all the options – are home care, community based services or assisted living possible?
• Look at the cost implications – even when offered formal care by the state, many older persons in Europe are obliged to pay a contribution to the cost of care. Find out what you will be required to pay and what will happen in the event of any financial difficulties.
• Look for advice – local and national NGOs and the National Human Rights Institution (NHRIs) can help direct you to advice on your rights and entitlements.
• Get help from organisations for older persons or human rights defenders, if you feel you are being pressured to move into a residential care home against your will, or discharged from acute care before you’ve had a chance to find a care home that you’re happy with. They can help you fight for your right to access care in the community.
• If possible, identify care homes based on your needs (location, size, specialist services for a specific healthcare requirement).
• Before admission to the care setting, the staff should explain your rights and protections, as well as how the complaints system works.
• Upon admission or soon after, you should have the opportunity to collaborate with care staff about your schedule in the care home.
• You should always be treated with dignity and respect.

Photo: British Red Cross Care in the home