Dignity and Older Europeans

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Cardiff Centre for Ethics, Law & Society
http://www.ccels.cf.ac.uk
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Dignity and older Europeans
Dr Win Tadd
Senior Research Fellow
Department of Geriatric Medicine
Cardiff University
Introduction
Ethical issues involving older people have recently come to the fore, This is not
surprising as ageing of the population is a universal phenomena affecting both
developed and developing countries. By 2020, the numbers of people aged 80 years
and over in Europe is predicted to be between 6 and 8 per cent of the total (Butler,
1997) and by 2050, over 100 million people in Europe will be over 65 years of age,
with those over 80 years rising to 48 million. Such demographic changes throw into
dramatic relief a number of profound questions which affect all aspects of life at a
variety of levels: individual; family; society; economics; medicine; health and social
care. For example, what if anything do we owe older people as individuals or societies?
How do we determine a just distribution of resources between the generations? How do
we decide about life sustaining treatments in old age? What authority should be placed
on advance directives? What constitutes successful ageing or for that matter, a good
death? How should we treat people with dementia? What value should be placed on
quality of life? How should we conduct research with older people? How can we
ensure that services for older people promote important moral values such as
autonomy, dignity and respect?
Within the confines of this paper clearly it will not be possible to address all of these
issues and therefore I wish to focus attention on the topic of dignity in the care of older
people, drawing on research undertaken as part of an EU funded project between 2002
and 2004
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.
The right to, and the need for dignity is frequently cited in policy documents relating
to the health and social care of older people (DoH, 2000, 2001a, 2001b, 2006;
Brazinová, Janská,& Jurkovi, 2004; Ministry of Health and Social Affairs, Sweden,
1997). In the UK, the NHS Plan (DoH, 2000) uses the term on a number of occasions
(Chapter 15 is entitled ‘Dignity, security and independence in old age’) and the
National Service Framework for Older People explicitly mentions dignity in relation
to person-centred care (DoH, 2001a). More recently, the UK national director for
older people presented the next steps for the Framework in a report entitled A New
Ambition for Old Age (DoH, 2006). The report describes how some staff demonstrate
deep rooted negative attitudes and behaviours towards older people and it concludes
that much more is to be done if all older people are to receive care which is humane
and dignified. As a first step, the Department of Health has established a Dignity in
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The Dignity and Older Europeans project (contract number QLG6-CT-2001-00888) was
funded by the European Commission, DG Research, Directorate E: Biotechnology,
Agriculture and Food, under FP5, Quality of Life Programme.
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Care initiative to ensure all older people are treated with dignity when using health
and social care services. This initiative is intended to create a zero tolerance towards
violations of dignity in any care setting.
A similar emphasis is placed on dignity in other European countries. For example, the
government of the Slovak Republic adopted a Charter of Patients’ Rights (Brazinová,
Janská & Jurkovi, 2004) which states that the ‘right of patients are based on the right
for human dignity, self-determination and autonomy’ and in Sweden, the (1997)
Health Act states that ‘Care shall be given with respect for the equal value of all
human beings and for the dignity of the individual’.
Dignity is also expressed as an important value in professional codes (ICN 2000;
NMC, 2004) and declarations of human rights (UN, 1948; Council of Europe; 1997).
Yet concerns about the standards of care for older people abound (Baggott, Allsop
and Jones, 2005; Tadd and Bayer, 2001). Although many older people are able to
pursue their interests through better education and financial and physical wellbeing,
for others the last years of life are devastated by chronic illness, disability or
dementia, increased dependence and a reduced quality of life. A major issue therefore
for many European societies is how to ensure that older people can live out their days
with dignity.
Why dignity one might ask? There is some evidence to suggest that positive health
and social outcomes result when people feel more valued and respected; are involved
in care decisions; maintain a positive self-regard, and are able to exercise direction
over their lives (Kenny, 1990; Bensink et. al., 1992; Brillhart & Johnson, 1997,
Ranzin et. al., 1998; Tadd, Dieppe and Bayer, 2002; Walsh and Kowanko, 2002). In
circumstances where cure is not an option, it seems even more appropriate that care
with dignity should become the standard. If this is not the case, then it has serious
implications for human well-being, as well as an economic cost, as distressed and
dissatisfied relatives may vent their displeasure by initiating formal complaints which
require costly investigation and resolution (Tadd, Dieppe and Bayer, 2002). Further,
once dignity is put on the back burner, there is a danger that neglect and disregard will
become the norm and staff morale will plummet, as they themselves are ‘brutalised’
by ‘uncaring’ systems (HAS, 1998; DoH, 2001; Tadd and Bayer, 2001; Baggott,
Allsop and Jones, 2005). Such consequences have been routinely uncovered in
investigations into patient abuse (CHI, 2003). All this suggests that the perception of
patients as people possessing dignity is of the utmost importance in practice and
considerations of dignity appear to be a central element in the provision of high
quality care.
Dignity, however, is a complex concept that is difficult to define and without
clarification of what the concept entails, aspirations to recognise, respect and promote
the dignity of individuals within the daily reality of care giving, are not only subject
to wide variation, they are also toothless and in danger of degenerating into mere
slogans (van Hooft, et. al, 1995). It is somewhat surprising therefore that relatively
little research has been undertaken to explore the meaning of dignity, especially in the
case of the most vulnerable populations for whom cure is not possible. Some analysis
of the concept and its importance for nursing has been undertaken (Pokorny, 1989;
Soderberg et. al, 1997; Shotton and Seedhouse, 1998; Gallagher and Seedhouse,
2002; Haddock, 2003) but systematic evidence as to how those providing care for
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older people see dignity, or how they promote dignified care is limited (Seedhouse
and Gallagher, 2002; Woolhead et al., 2004).
Even in palliative care, which has a considerable literature on ‘death with dignity’,
and where the goal is ‘achievement of the best quality of life for patients and their
families,’ (WHO 1990) ‘dignity remains a poorly defined and unexplored concept’
(Enes, 2003). This is despite the fact that requests for euthanasia and/or physician
assisted suicide are often rooted in concerns for the person’s dignity (Back et al.,
1996; Emanuel et al., 1996; van der Maas et al., 1991; van der Maas et al., 1996;
Meier et al, 1998; Kissane et al., 1998; Chin et al., 1999; Sullivan et al, 2000; Ganzini
et al., 2000). Similarly, physicians often cite loss of dignity as a reason for acceding to
patients’ requests for assistance with suicide or for euthanasia (van der Maas et al.,
1991; Meier et al, 1998; Ganzini et al., 2000). Studies on dignity in palliative care
have usually been small scale (with the exception of Chochinov’s work or they have
relied on professionals’ views of what constitutes dignified care or a dignified death,
(Turner et al., 1996; Gamlin, 1998; Street and Kissane, 2001; Chochinov, 2002;
Chochinov et al., 2002a; Cochinov et al., 2002b; Enes 2003). The Dignity and older
Europeans (DOE) project sought to remedy some of these deficits.
Overview of the DOE project
The study was cross-cultural involving older people, health and social care
professionals and young and middle aged adults from the UK, Spain, Slovakia,
Sweden, France and Ireland and was multi-disciplinary involving nurses,
philosophers, sociologists, psychologists, clinicians, health service researchers and
non-governmental organisations. It lasted three years, from 2002 - 2004, and was
divided into 3 phases
Phase 1 involved a review of the philosophical and professional literature from
which a model of human dignity was developed.
Phase 2 involved the empirical elements where data from 265 focus groups
involving 1320 participants in 6 European countries was qualitatively analysed .
Phase 3 involved refinement of the model and development of the educational
materials and policy and service recommendations for the care of older people in
Europe.
Although a full account of the study is beyond the remit of this paper, detailed
versions of the methodology can be found in Calnan and Tadd (2005); of the
philosophical model in Nordenfelt, (2003, 2004) and Nordenfelt and Edgar, (2005);
and of the findings in Bayer, Tadd and Krajcik (2005), Arino-Blasco, Tadd and
Boix-Ferrer (2005) and Stratton and Tadd (2005).
In this paper I would like to explore some of the findings that focus on health care for
older people from the perspectives of older people and professionals before
considering some of the implications.
Older peoples views of dignity in care
A large proportion of the discussion among the focus groups with older participants in
each country concerned dignity in care. Worryingly, most participants found it easier
to speak of their experiences of indignity than of those where their dignity had been
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enhanced.
Family Care
Many types of care were discussed, including family care, acute care, long-term
residential care and care at the end of life. Understandably the majority of participants
preferred to be cared for by a loving family, however, for many this was not possible,
either because their children had moved away or both partners had to work, leaving
them unable to care for their ageing parents. Most participants decried this state of
affairs believing that European societies were both consumerist and individualistic,
which resulted in many older people being reliant on external agencies for any care
they required. For example
“What was the old mindset? Take care of your parents at home! The thing is that
now young people have tons of work. And now a TV, now a car... We used to do
without anything!”
(UK patient)
Some participants were ‘shared’ among their children, spending three months with
one child and a similar period with another, or husbands and wives were separated
with one going to one child and the other to another, while others recognized there
was no room for them.
“When they pack you off from one home to the next...
“That doesn’t seem dignified, to go from one child’s house to another in ‘shifts’?”
“No, not at all.”
“They make you feel like a ball. Like they were taking you in out of obligation.”
(Spain)
“They would take me to stay in their flat if they could, but the children have a
computer there and books and the flat is too small for the whole family.” (
Slovakia)
Older participants also recognised that governments needed to do more to ease the
economic and physical burdens for families who choose to care for their elderly
relatives. When family care is not possible, nursing homes or some form of residential
care are often the only alternatives. Most older participants wished to be involved in
decisions to enter long-term care and many participants found the thought of being
forced into residential care particularly abhorrent.
“Now this person needs someone to care for them. What happens to people who
don’t have anyone?” 6.1: “Off to the nursing home.”
“I think that a lot of people, at least 80%, when they find themselves like that,
they’d prefer to be dead.” (Spain)
“The prospect of being “shoved” into a nursing home by family members and
being “forgotten” is still feared by some older people.” (Ireland)
“One thing I have noticed here is that most people I know didn’t come on their own
decision. At one moment in their life, independent of their age and independent of
being fit or not, … it has been their family, their close relatives, their children who
decided for them.” (France)
Dependence and independence
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A major concern of all the participants was loss of independence, which together with
increasing dependence, was one of the harder adjustments they faced.
“I am healthy for my age. I pray not to be dependent. I have pity for all who must
rely on the help of other people. I pray for sanity”. (Slovakia)
“I don't mind dying but … I'm terrified of getting in the situation where I can't look
after myself”. (UK)
Whether because of physical or mental impairment, dependence was viewed as being
utterly humiliating and in all centres participants expressed a fear of becoming a burden
on either their families, or the State, as they found this prospect shameful. Participants
also acknowledged that there were degrees of dependence, which affect a person’s
experience of dignity. When disability or frailty was such that intimate care would be
necessary for the rest of one’s life then dignity was difficult to maintain. For this reason
the attitude of older people towards increasing dependence and infirmity was important.
If people remained positive regardless of their disability then participants claimed they
could better retain their dignity.
“When I’ve lost my faculties I would rather die. Because I should not be a burden
for society, and certainly not a nuisance for my family.” (Spain)
Attitudes of carers
Such feelings could also be either ameliorated or exaggerated by the attitudes of family
members and carers. When negative attitudes were displayed feelings of uselessness and
lack of value were heightened.
“Well they hounded me enough. Not now… well they probably will pop up again
some time but you just feel you are a burden. I felt a complete burden, that I should
stay in hospital forever or just fade away… that my useful days were over, it was
condescending, patronising.” (France)
Some participants believed that when care-givers demonstrated positive attitudes
towards dependent old people, this was an expression of the regard in which they
were held, in other words, a concrete demonstration of value.
“... When you feel that they treat you with loving care, affection, attention,
gentleness, it makes you feel good. It makes you feel like a human being.”( Spain)
“The nursing staff up here work very, very hard. They do. But I always find time
to talk to them or they to me and they have always treated me with dignity, it didn’t
matter whether they were just passing, you were acknowledged and you were
treated like the person you are”. (Ireland)
Long-term care
Although participants did not relish the thought of long-term residential care, most
acknowledged that for many people there was no alternative. However, recognition,
by staff and relatives, of the impact that such a move could have on an older person’s
experience of dignity was vital. Some participants from residential care spoke of the
growing isolation they experienced and how even after accepting and adapting to
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  • Chapter
    IntroductionThe Dignity and Older Europeans studyFindingsDiscussionConclusion AcknowledgementsReferences
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