Europäische Union - 25.04.2005 - von Richard Baker
Age discrimination is an increasingly high profile issue on the European political agenda and increasingly emerging in public discourse and I welcome the opportunity to offer a perspective from AGE.
AGE is the European Older People’s platform which brings together 150 national and regional organisations representing older people or engaged in work around ageing populations from the 25 member states of the European Union and from the candidate countries. Within AGE, the Expert Group which I Chair draws together 28 members from EU member states, Norway and a number of European networks. It is responsible for advising and supporting AGE’s policy and influencing work in this area.
In exploring the issue of age discrimination, health and the impact on bio-medicine, it is important to be clear on a number of aspects of context.
Firstly, the nature of our demographic trajectory and the increasing diversity of the older population. You will all be aware that we are living longer and having fewer children but the scale of this change is worth emphasis. In Europe, it is estimated that the proportion of the population aged over 60 will grow from 20 to 37% between 2002 and 2050. In some states the rate of change is much faster than the average – in the Czech Republic, for example, over the same period the proportion of over 60’s is projected to rise from 17% to 40% Across the developed world the figures are following similar trends and in the developing world, despite the tragic tolls taken by AIDS and war, populations are ageing overall with the global projections showing a growth in the proportion of 60 year olds from 10% to 21% over this period.
Secondly, however, it is the nature of our ageing society which is much more important than the figures themselves. Our older population of today, and future older populations, are, in common with other sections of the population, increasingly diverse in terms of their cultural backgrounds, their skills, their lifetime experiences, their health, their mobility and geographical location. Some older people control a huge proportion of national wealth whilst others live in high levels of poverty - this is especially the case for older women. The European Commission estimates that almost 30% of people over 65 in the EU15 member states had income below the poverty line. This heterogeneity is an important aspect of the policy context around age.
And we must be clear in our thinking about ageing that, at the individual level; it does not affect everyone in the same way. It is a deeply personal process with different transitions and experiences. The male-oriented notions of lifetime transitions on which many policies are constructed – fixed periods of time in school, work and then retirement – with the dates of these transitions fixed around certain birthdays - are rapidly breaking down for men and they were never really true for women’s lives anyway. Family structures are increasingly diverse with smaller overall sizes and multiple generations alive simultaneously. In the context of health, chronological age does not map uniformly to biological age and the older population includes people with a range of physical and mental conditions acquired during the course of their lives, but there is not a health condition which we could recognise as old age.
Yet, across Europe we continue to use age as a criterion in the way we organise society. For example, we talk in the employment context about the notion of ‘working age’ as 18-65 when large proportions of Europe’s population start work before or well after this and, as a result of redundancy, early retirement, health and age discrimination only around 40% of older people in the European Union are working in the last 10 years before ‘retirement’ age. In Italy for example, one of the countries of the EU with the highest levels of life expectancy, for many younger people education continues until 27 years of age and the current level of employment of older workers is 31%. At the same time, in some countries up to 10 percent continue to work in paid employment beyond ‘retirement’ age, and a huge number more make unpaid and voluntary productive contributions to our society which go unrecognised and undervalued.
The same disjuncture applies in the provision of goods and services with age-based stereotypes and attitudes persisting and chronological age being used to define access to insurance, financial services, social security, education and training and, of course, health care - one of the most important areas for concern and anxiety for people of all ages – but perhaps particularly for older people, desperate to retain their health and sense of well-being as they age. Sadly, whilst this is an area of concern, this is also one of the areas where policy and practice is most wedded to the use of age in research and decision making. This results in barriers of different forms which limit access to services and opportunities and have impacts on health and independence and the presence of underlying attitudes and stereotypes which influence the approach of practitioners, researchers and patients themselves.
In December we published two reports at a meeting of members of the Inter-group on ageing in the European Parliament which revealed some interesting issues about age discrimination in this field.
The first, a simple document entitled Age Barriers: Older people’s experience of discrimination in access to goods, facilities and services sought to identify a list of areas outside the field of employment where older people faced direct or indirect discrimination. It did not claim to be a comprehensive review, but sought to set out a prima facie list of examples of age discrimination for further study in the context of both the forthcoming European Commission review on future equality actions and an ongoing discussion within AGE about the incidence of age discrimination and the most appropriate mechanisms to deal with it.
In the area of health it identified some interesting issues:
§ how age is used directly across the EU as a component in the analysis of effectiveness of treatments and procedures and a key criteria in their targeting and availability. One procedure which a number of my colleagues reported was in Government funded breast cancer screening where there are age limits for access of 59 in Poland, 65 in Ireland and 69 in Cyprus. It is restricted to women aged 50-69 in Belgium and Denmark but is available until 75 in the Netherlands. In Hungary, there are not age limits being used. If age were to be a good indicator of effectiveness then, perhaps, one would expect that clinical analysis in different member states would lead to fairly similar availability regimes. Clearly they are not currently consistent. Perhaps national statistical differences do justify differences in availability – we are aware, for example, that Dutch women run a higher risk of developing breast cancer at an early age than their counterparts from Italy or Spain. But what is, perhaps, striking is that the availability limits are so clear for many countries – no fuzzy boundaries – one day you can have it, the next day you can’t.
§ across the Union, whilst older people are key consumers of treatments and medication, they are not a priority. Many member states have yet to adopt national health strategies targeted at older people. One that does exist is the National Service Framework in the UK - of which more later. It is salutary that it has as its first standard the need to root out age discrimination in health and care as a result of considerable research about the presence of such discrimination in the national health and care system. The German government have also done research in this area and their report in 2002 highlighted that people over 65 experience unequal treatment in keys areas of rehabilitation and prevention. The Swedish MERI research report funded by the European Union highlights large gaps in available evidence about older people and bio-medical treatment but also suggests that older women receive less modern and cheaper treatments than men
§ a range of examples from across the EU showing how older people are de-prioritised for treatment compared with other age groups with age being used directly in priority setting in Greece and Slovenia, with older people in France and Belgium being declined private health insurance after retirement and older people receiving less prestigious or long term treatments in Denmark, the Czech Republic and Germany
Perhaps closer to home for this conference, the report also identified how older people and children are excluded in many states from clinical trials with a particular issue raised in the report about strict age limits being placed on cancer trials.
Our second report looked at legislation which is already in existence which covers these areas. Whilst the current European Directive covering age – the 2000 Directive on Equal Treatment in Employment - only focuses on employment and training, in some states – our study reported on Australia, the USA, Ireland, Belgium, Canada but there are also others – legislation pre-existed the Directive in the area of goods and services. In each of these states their legislation covers health and medicine.
Momentum continues to develop gently in Europe – the Employment Directive having prompted wider debate – and other states such as Sweden and Lithuania are taking wider measures which will stimulate debate around age discrimination in health and medical treatments. On the presumption that this momentum continues at European and national levels, we are going to need to get to grips with our understanding of ageism in a range of areas beyond employment.
This environment, where ageism is increasingly recognised and challenged - not least by patients themselves – and where it is increasingly divergent from demographic reality, offers up some challenging issues for Ethics Committees and those tasked to come to judgements on the efficacy of research practices and the targeting of bio-medical treatments.
Articles 1 of both the Convention on Biomedicine and the Protocol on bio-medical research clearly state that their objects are to protect dignity and identity and guarantee everyone respect, rights and freedoms, without discrimination. Article 3 of the Convention commits signatories to providing equitable access to health care of appropriate quality. In the context of bio-medical research paragraph 3 of article 2 of the Protocol sets out in great detail issues of scope which is admirable for its specificity in identifying groups which might be at risk and the absence of the use of age as a proxy for risks of one form or another.
Elsewhere the convention and the protocol begin to bring age into discussion. It first appears in article 6 of the convention when it considers issues around consent. When seeking to determine the opinion of a minor, then a test of capability to offer an opinion is ‘age and degree of maturity’. The same wording appears in article 15, paragraph 1, in the protocol in the context of research on infants or very young children and the explanatory note again comments that ‘it is necessary to evaluate their attitude taking account of their age and maturity…’ . Later article 17 of the Convention and in paragraph 2 of article 15 of the protocol highlights a justification for research in order to benefit an individual or persons in the same ‘age category….’
This is interesting wording, which implies clearly an understanding that in the normal course of ageing people change and that there are phases of life where people often share common needs and characteristics. But, by avoiding the assertion of specific ages such as 65 or 80, or 6, or age ranges such as over 65 or under 16, and, relying instead on notions such as ‘maturity’ and ‘category’, the wording perhaps recognises that the timings of these transitions are fuzzy and the use of hard edged age bands is, just as in the area of employment I mentioned earlier, likely to lead to discrimination as people are either eligible or ineligible depending on their specific birthday.
This question of the use in policy of specific ages, or even age bands with hard edges, is a key issue which is likely to be tested legally across Europe in the context of employment law as cases emerge following the Employment Directive and which has begun to be tested in cases related to goods and services in those states which have wider legal frameworks. But this is also difficult territory, particularly in the translation of age neutrality into law, policy and research where clear boundaries make life much easier.
In thinking about age discrimination and recognising the changes which we experience during the life-course, when are age based differences of treatment unacceptable discrimination? When might they be justified? In the health treatment context, I find it very hard to imagine circumstances where the ‘here today, gone tomorrow’ position which uses hard chronological age limits to determine availability can be justified, but the targeting of treatment on groups within the population with common characteristics seems much more legitimate. It raises a key question for bio-medical practitioners about whether age is a legitimate tool to use to identify these groups?
The evidence from AGE’s report suggests that our health care systems have yet to respond adequately to these issues. This is also supported by other research. For example, a recent research paper by Dr Suzanne Wait, Director of Research at the International Longevity Centre in the UK, has reviewed the current academic literature on experiences of age discrimination in health.
It seems to be dominated by UK evidence – there is very little other research. This is an issue in itself and there needs to be much more work done to develop an evidence base in this area both to raise the profile of the issue and to understand its complexities.
However, the evidence which does exist paints a picture which confirms the message within the AGE paper. As I mentioned earlier, the UK now has a National Service framework for older people, developed to provide an overall national framework for the improvement of the health of older people and the development of health care services. Following initial campaigning by Age Concern and our colleagues in Help the Aged, particularly highlighting failures to consult patients and relatives in the placement of Do Not Resuscitate notices on the medical records of individuals, wider research by the Governing Bodies of the medical professions included a survey of General Practitioners in 2000 in which 12% reported upper age limits in knee replacements, 35% in kidney dialysis, 20% in cardiac care and 34% in access to cardiac by-pass operations.
A more recent survey by the Kings Fund showed that age specific limits are rarely written down in protocols or guidance but are rather more custom and practice – learned behaviour within the professions – based on presumed evidence and rarely questioned. Professor Sir John Grimley Evans of the John Radcliffe Infimary in Oxford has described this as ‘hidden discrimination’. One surgeon questioned as part of the survey was quoted as suggesting that the fact that research was not done to test assumptions, meant an absence of evidence of effectiveness, hence perpetuating a climate of caution.
Work which has been done in other countries suggests that the same issues exist elsewhere. In Canada, a study by Herbert-Croteau at al showed that 83% of women between 50 and 69 were offered adequate adjuvant treatment, compared with only 49% over 70 despite similar prognosis of disease. In a study reported in Revue de Practicien, Boutan-Laroze highlights how, despite evidence of equivalent survival rates for patients above and below 70 years old for patients treated with chemo-radiotherapy regimens, misconceptions about cancers in older people being slow progressors have lead to what Dr Wait describes rather delicately as ‘therapeutic frugality’.
And evidence also suggests that these issues exist in the field of research. Across Europe older people are the largest consumers of medicines. Finnish figures highlight how people over 65 years of age use over 50% of all the medicines consumed in the country and are responsible for 40% of all drug costs. In 2000 only 3% of Finnish people over the age of 85 were not using some form of medication and the mean number of drugs in use for the average older person across the EU ranges from 6.2 in Northern Ireland to 7.6 in Sweden.
A paper produced by Dr Sinead O’Mahony of the British Geriatrics Society reviews the evidence about ageism in clinical trials. She suggests that whilst much of this prescribing is justified by need given that the burden of chronic disease, morbidity and mortality is strongly age-related, this prescribing is not strongly evidence based for older people due to the under-representation of older people in clinical trials – a gap which needs to be urgently addressed.
She highlights evidence how even though people over 75 years of age represent about one third of patients for acute myocardial infarction, they were only 10% of the earlier trial group on which the efficacy of thrombolysis was based. In the absence of reliable data about risks and benefits, she suggests that the research community have relied on the extrapolation of evidence from middle-aged men to older women. These gaps have persisted into more recent trials in cardio-vascular medicine.
In the area of oncology, predominantly a disease of older people, older people are very poorly represented in clinical trials adding to uncertainty about treatment benefits and side-effects. Chu and others report evidence across Europe and North America that older people are much less likely to receive definitive treatment.
On the day that I was preparing this text, I did my own, very quick, randomised trial – I tapped into the Cancer Relief UK website and pulled up the first 20 clinical trials out of 194 listed. They were testing treatments for 15 different cancers and included a range of different treatments. Only 6 of them did not have some form of age exclusion. 7 did not permit people under 18 from taking part, two did not permit people under 16. 1 study, which said it was targeted at children, had an upper age limit of 21. There were some age ranges, 18-60, 18-50, for example, and one which was only for people aged over 55.
I have no doubt that the researchers conducting these programmes have absolutely no intention of institutionalising age discrimination and are using age to seek to target their research appropriately. But given the evidence I have highlighted from reputable researchers and the wider evidence from my colleagues in AGE across Europe, I think we do need to take great care that what might seem justifiable research practice to establish evidence of average results and risk does not translate into barriers to access to services or inadequate research. I think we also need to examine carefully the validity of the age exclusions in research programmes themselves and test the assumptions behind them, especially, perhaps, in areas like cancer where clinical trials are often the only chance that patients have to try newer treatments for their condition. Clearly there are ethical issues to be grappled with around the frailty of some older patients and the consent of children, but by the same token there are similar ethical issues to be confronted about the deployment of treatments to people within these age groups without a developed evidence base, especially given the increasing heterogeneity of the population and the importance of these groups as volume consumers.
So what should Ethics Committee members make of all this. What is the conceptual framework around age equality which we should apply to article 3 of the convention in trying to deal with age discrimination in the field of bio-medicine? What can Committee members do practically?
We can, I think, draw usefully from the concepts of equality which are generally recognised in European and International law. In the context of the word ‘appropriate’ which features so strongly in the Convention, in common language these concepts would suggest that the simple fact that one person is of a different age than another should not mean that they have different rights of access to a treatment which might help them. On the other hand, the fact that someone is of the same age as someone else doesn’t mean that they should have to have the same treatment if a different treatment is what is required in their individual circumstances. We should be seeking to achieve fair and appropriate access and equality of outcome. In the context of age, these principles will be increasingly relevant as the older population becomes more numerous and more diverse.
And we have to understand that age discrimination exists in a number of forms.
Direct discrimination, where someone is denied access to a treatment simply because of their chronological age. Easy to spot, rarely justifiable, very common. For example the ‘fair innings’ argument that a younger person should have priority over an older one where resources are scarce.
Indirect discrimination, where an apparently neutral provision leads to a discriminatory outcome - in a health care context, most commonly found in a decision not to deliver a service which is mostly required by people with a certain characteristic - in this case age - and which has a detrimental outcome compared with others.
And then, perhaps particularly in the health care context because of the power relationships involved – but not exclusively – we need to recognise the importance of cultural attitudes and ingrained stereotypes which do not manifest in overt prejudice but in hidden discrimination and unquestioned use of assumptions.
We can also draw from established concepts to identify and test where differences of treatment might be justified. Each of the equality frameworks permit the identification of practices which can be exempted if objectively justified as necessary and proportional. In a biomedical context, the use of age bands to establish comparative risk in a trial situation might be an area where such an exemption might be justified. Another area for exploration in this context might be where treatments can be clearly shown to be appropriate for age groups or individuals given their characteristics. This form of targeting would parallel positive action in the employment context. Clearly though, genuine justification would need to be established and it would be important to ensure that the use of age for testing or research purposes did not translate into rigid barriers to the actual treatment.
Members of Ethics Committee can also play an important role in this area promoting good practice and examining the assumptions underlying the use of age. So much of the challenge of dealing with age discrimination relies on the challenging of ingrained assumptions and stereotypes. We should not simply rely on the use of policy and regulation. Asking questions of those proposing studies, testing the assumptions of researchers and examining the evidence underpinning proposed age limits. These are all important roles which need to be undertaken. Members can also promote awareness through discussions nationally and locally and the promotion of training for staff about age limits and discrimination. They can also seek to promote more detailed research in this area within their territory to help build a broader evidence base.
In our ageing society, with a population characterised by diversity and heterogeneity across the age ranges, if we are to protect dignity and identity and ensure rights and freedoms without discrimination, we need to get to grips with the issue of age discrimination. It is clear that it exists within our health care system, within bio-medical practice and within research. Evidence would suggest that it can effect the achievement of the best possible outcomes for individual patients and that research findings can be more accurately established. But we also need to be clear not to throw the baby out with the bathwater and challenge positive action or legitimate differentiation.
There is much to be done – research, awareness raising, discussion, debate, the establishment of a clear framework on this issue which achieves the values of the convention. I hope that this contribution has added to your consideration of the issue.
Richard Baker: Speech to Council of Europe Ethics Committee Conference, "Age discrimination and bio-medicine"
Dubrovnik – April 25 2005
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