The right of older persons to dignity and autonomy in care

Human rights Comment
Strasbourg 18/01/2018
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The right of older persons to dignity and autonomy in care

Older persons have exactly the same rights as everyone else, but when it comes to the implementation of these rights, they face a number of specific challenges. For example, they often face age discrimination, particular forms of social exclusion, economic marginalisation due to inadequate pensions, or are more vulnerable to exploitation and abuse, including from family members.

These challenges require specific policy responses in the context of a rapidly ageing world population, but particularly so in Europe which already has the highest median age in the world: the World Health Organisation (WHO) estimates that 25% of Europeans will be aged 65 and older by 2050 (from 14% in 2010).   Against this background, the question of the human rights of older persons has been receiving more attention within the UN system, but also the Council of Europe, for example in the form of a Recommendation by the Committee of Ministers on the promotion of human rights of older persons adopted in 2014.

We need to acknowledge that the existence of many stereotypes about older persons as being helpless, in poor health or dependent could be a problem in itself and that it is not uncommon for older persons to defy these stereotypes: Claudio Arrau, one of the greatest concert pianists of the 20th century, continued touring, recording and extending his repertoire well into his 80s. However, it is also a reality that many of us must face increasing frailty as a natural consequence of the ageing process, sometimes together with cognitive impairment, reducing the independence that we crave and increasing the need for care. When this need is such that help is required for daily tasks, such as shopping, cooking, eating, cleaning or bathing, over a long period of time, we speak of a need for long-term care.

Long-term care

The European Social Charter, the point of reference for social rights in Europe, was the first international convention to provide specifically for care for older persons. States who have accepted Article 23 of the Revised Social Charter (or Article 4 of the 1988 Additional Protocol to the 1961 Charter) have the obligation to enable older persons to remain full members of society for as long as possible. This includes enabling them to lead independent lives in their familiar surroundings as long as they wish and are able, by adapting their housing to their state of health and by providing the health care and the services they need. For older persons living in residential institutions, states must guarantee appropriate support, while respecting privacy, and participation in decisions concerning their living conditions. Unfortunately, only 20 member states have accepted this provision to date.

As recognised by the Parliamentary Assembly of the Council of Europe (PACE) in May 2017 in a Resolution devoted to the question of the human rights of older persons and their comprehensive care, the access of older persons to good quality health care and long-term care remains a challenge in Europe.

The European Network of National Human Rights Institutions (ENNHRI) has been conducting a very valuable project on the human rights of older persons in long-term care since 2015. In June 2017, it published a report which took as its basis the monitoring work carried out by six of its members (the National Human Rights Institutions in Belgium, Croatia, Germany, Hungary, Lithuania and Romania). The report shows that, in spite of good practices and the hard work and dedication of many care workers, human rights concerns were found in care homes in all six countries (mirroring similar research carried out by 11 other ENNHRI members in recent years), notably due to a lack of resources and the failure to use a human rights-based approach in the design and delivery of long-term care.

Of course long-term care is not limited to residential settings and persons requiring it should be offered the possibility to choose their living arrangements, with adequate supports. Of particular relevance in this respect is the United Nations Convention on the Rights of Persons with Disabilities (CRPD), ratified by 45 of the 47 member states of the Council of Europe and by the EU: in addition to its Article 25 on Health which acknowledges the needs of older persons, the CRPD also provides for the right to live independently and to be included in the community in its Article 19. This right, along with dignity and self-determination, must be guiding principles for the design of long-term care services, including in residential settings, where the majority of care recipients are estimated to have a form of disability.

Very worryingly, research and analyses of national policy reforms indicate that, despite the urgency of rethinking long-term care in the context of the rapidly growing ageing population of Europe, many Member States are not adequately planning for these future challenges, but are instead improvising, with short-term fixes. This is likely to further aggravate already existing problems of access to long-term care, which can sometimes be available only to those with the highest care needs or those who can afford to pay for them, as well as compromising the quality of services and the protection of the human rights and dignity of their recipients.

It is recognised that older persons are highly vulnerable to abuse, including in long-term care, the WHO estimating that at least 4 million older persons experience maltreatment in the European region every year. In a case concerning a geriatric nurse who was dismissed for having brought a criminal case against her employer alleging deficiencies in the care provided (Heinisch v. Germany, 21 July 2011), the European Court of Human Rights recognised this problem, stating that “in societies with an ever growing part of their elderly population being subject to institutional care, and taking into account the particular vulnerability of the patients concerned, who often may not be in a position to draw attention to shortcomings in the provision of care on their own initiative, the dissemination of information about the quality or deficiencies of such care is of vital importance with a view to preventing abuse”.

In this context, while the ENNHRI members collaborating for the abovementioned report did not find evidence of outright torture or deliberate abuse as such, worrying practices were detected in all six countries, raising serious concerns about upholding dignity, the right to privacy, autonomy, participation, and access to justice. These included, among many other examples, verbal and physical aggression; lack of adequate medical care, as well as overuse of medication; locking doors from the outside; disrespecting the intimacy of residents, for example by bathing them at the same time; lack of heating or insufficient food to save money; or preventing residents from making complaints. It is not excluded that some of these occurrences of neglect could potentially be serious enough as to constitute a violation of Article 3 of the ECHR (prohibition of inhuman or degrading treatment).

It is urgent for member states to thoroughly review, with the participation of older persons, their approach to long-term care in order to make it more human rights-based, including in the light of the Revised Social Charter (by accepting Article 23 if they have not yet done so), the 2014 Recommendation of the Committee of Ministers, and the 2017 Resolution of the PACE. In addition to providing the resources such a system requires to be accessible and affordable, states must also take account of the training needs of care professionals, as well as of informal caregivers, and ensure that the choices for older persons are maximised, for example when they wish to live in their home, while preventing social isolation (the 2003 heat wave in France which killed many older persons was a terrible wake-up call about the risks of such isolation). Particular attention should be paid to ensure regular independent monitoring of long-term care services on the basis of clear principles and rights that older persons can easily enforce themselves. I encourage member states and care givers to make full use in this process of the relevant toolkit of ENNHRI.

Palliative care

Another important aspect of the right of older persons to dignity and autonomy in care concerns palliative care. Palliative care is an approach that improves the quality of life of patients and their families facing life-limiting illness, mainly through pain and symptom relief, but also through psychosocial support. This is contrasted with curative medicine, for which the goals of curing an illness or extending the patient’s life come before the subjective well-being of the patient. However, palliative care and curative treatment can be administered in parallel.

While palliative care concerns persons of all ages suffering from life-limiting illnesses, such as cancer, lack of specific measures to avoid pain or to allow the terminally ill to die with dignity naturally affects older persons in a disproportionate manner, as they experience increased rates of chronic and terminal illnesses involving moderate to severe pain. This is again of concern in the European region given the projected demographic developments.

The importance of palliative care as an integral part of health services and its denial as a human rights violation are being increasingly recognised at the international level. Special Rapporteurs of the UN on Torture and on Health stated that the denial of pain relief causing severe pain and suffering may amount to cruel, inhuman or degrading treatment. Within the Council of Europe, the abovementioned Recommendation of the Committee of Ministers on the human rights of older persons devoted a chapter to palliative care, providing that “any older person who is in need of palliative care should be entitled to access it without undue delay, in a setting which is consistent with his or her needs and preferences, including at home and in long-term care settings”.

However access to palliative care and pain relief remains problematic. Human Rights Watch reports that many countries in Europe are affected by shortcomings regarding palliative care, such as the lack of a palliative care policy and of pain management training of carers, as well as problems of regulation and availability of opioids. I was heartened to see that Armenia and Ukraine, where these problems caused extremely intense, needless suffering until very recently, are now making progress in the right direction. However many other countries continue to face similar problems.

When it comes to older persons more specifically, a WHO report underlined how pain is frequently underassessed for older people, in particular for persons with dementia, and pointed to a widespread failure to inform and involve patients in decision-making, lack of home care, of access to specialist services and of palliative care within residential homes. A deficient palliative care policy also leads to frequent cases where older people undergo unnecessary examinations, treatments, hospitalisations and admissions to intensive care, sometimes against their own will. This is burdensome and expensive for the patient, family and society. All member states need to have a serious rethink of their palliative care policy to address such shortcomings.

An issue that is relevant in this connection is “advance directives” or “living wills”, i.e. documents which allow one to freely express one’s will, for example as regards care planning, so that it can be respected when one is no longer in a position to express it oneself, due to the loss of consciousness or ability to make decisions. These documents are particularly relevant for older persons with degenerative illnesses, such as Alzheimer’s disease. Their value has been repeatedly recognised by the Council of Europe, but practice is extremely variable among member states. I welcome the debate that took place on this question recently in Italy, culminating in the adoption of the so-called Biotestamento Law, but such debate is necessary in many other member states.

The common thread for all these issues is the need to safeguard the dignity, autonomy and self-determination in care and treatment choices for older persons, given the specificities of their human rights situation. Many argue that this situation points to a need for a binding international legal instrument, and I am happy to note the on-going work within the UN to assess this need. I also fully endorse the recent call of the PACE for a similar assessment, with the involvement of older persons, within the Council of Europe.

Nils Muižnieks

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