Eleanor Roosevelt, 1958

'Where, after all, do universal human rights begin? In small places, close to home -- so close and so small that they cannot be seen on any map of the world. Yet they are the world of the individual person... Unless these rights have meaning there, they have little meaning anywhere. Without concerted citizen action to uphold them close to home, we shall look in vain for progress in the larger world.' Eleanor Roosevelt, 1958

The Small Places has moved...

The Small Places has moved to a new home here, including all the old posts. Any posts after 6th March 2014 will appear on the new website, but old posts are preserved here so that URLs linking here continue to work. Please check out the new site.

Wednesday, 6 July 2011

The darker side of dignity

Dignity is a slippery term.  Writing extra-curially, Lady Hale once asked 'what does dignity mean? It is not a lawyers' concept.'  According to Kant, humans possess an inherent dignity, that requires us to treat other human beings as people and not 'things'; dignity makes us an end in ourselves, and not a means to other ends.  As a concept linked to 'rights' dignity began to emerge after the Second World War in what Francesca Klug has called the second-wave rights.  Dignity is enshrined in the preamble of that most aspirational and poetic of post-war human rights instruments, the Universal Declaration of Human Rights:
'Whereas recognition of the inherent dignity and of the equal and inalienable rights of all members of the human family is the foundation of freedom, justice and peace in the world'
It is a concept sufficiently noble, grand and vague that all the signatories to the UDHR could agree upon it as a grounding for the more detailed human rights it established.  Whereas the 'first wave' rights of the Enlightenment and Modern era tended to enshrine political and civil rights grounded in autonomy and liberty ('the right to be left alone'), dignity could potentially ground welfarist social and economic rights.  The kind of rights where a state actually had to take steps to do things for their citizens, rather than refrain from interfering with them.  Klug writes:

The concept [of dignity in the UDHR] illuminates that obvious point that the protection of the right to life, for example, involves providing the wherewithal to live as well as refraining from murder. It suggests that the freedom to choose your own path in life is a pretty hollow freedom if in reality you have few choices. The old Marxist complaint that fundamental rights are only ‘formal rights’, whereas ‘real rights’ involve access to a reasonable standard of living and so forth, was addressed by Socialists fusing with liberals and others to produce second wave rights.’
The aspirations of the socialists, detectable in the rights of the UDHR, are rather less visible in the European Convention on Human Rights.  Dignity did not make an appearance in its rather drier, rather less aspirational, but - crucially - justiciable text, and for this reason its outings in European and UK jurisprudence are relatively rare. Catherine Dupré has written extensively about its emergence in ECtHR, ECJ and domestic case law - a piece on the legal meaning of dignity was recently published on the Guardian website. Dupré argues that 'dignity', unlike liberty and autonomy, is a term better suited to taking into account our interconnected and interdependent natures, and the reality that our levels of dependence upon each other will vary across time.  Dignity is a concept that seems to be especially beloved of Lady Hale and Lord Justice Munby, and perhaps largely as a result of their rulings its use in community care case law seems to be growing.

For some, there is potentially a darker side to dignity, that arises from its relationship with liberty and autonomy. David Feldman writes:

‘We must not assume that the idea of dignity is inextricably linked to a liberal-individualist view of human beings as people whose life-choices deserve respect. If the state takes a particular view on what is required for people to live dignified lives, it may introduce regulations to restrict the freedom which people have to make choices which, in the state’s view, interfere with the dignity of the individual, a social group or the human race as a whole.’ (FELDMAN, D. (1999) Human Dignity as a Legal Value - Part 1. Public Law, Winter, 682-702. - no link available)
Potentially, sometimes, dignity may come into conflict with liberty and autonomy.  The crucial question is: Who decides what is dignified?  What happens if there are conflicting answers about which way of proceeding offers the best safeguards of a person's dignity?  What role does a person's own view have, on what is dignified for them?  Can someone else tell us that our conception of dignity is wrong, and their way of proceeding is more dignified?  And if so - does 'dignity' offer grounds for them to impose their view of how a person should proceed upon them?  And what is the relationship between dignity and happiness?  There are some interesting judgments emerging from European states that enshrine dignity in their constitutions.  A German court banned a laser quest game because it was an affront to 'human dignity'.  A French court banned a dwarf tossing show on the basis it was an affront to human dignity (thanks to Zoe Sutherland for this link).  These questions around who 'authors' dignity, and whether coercion can be used to secure a person's dignity, come up not infrequently in social care.  I can think of at least two recent legal cases where constructions of dignity by social care professionals and social care service users have come into conflict.  The first was the case C v A Local Authority [2011] (Re C) that I discussed in a series of three posts last month (beginning here); and the second is today's ruling by the Supreme Court in McDonald v Kensington and Chelsea (see also the press release).

The case of Re C concerned a young man with severe autism and severe learning disabilities, who lived in a residential school.  A great deal of the case revolved around C's desire to be naked and the school's response to that.  The court heard evidence that C would take his clothes off; the school's response to this was to encourage him to go to a room called the 'Blue Room', and staff would prevent him from exiting whilst he was in a state of undress. In their submission, the local authority wrote:
'We can not allow him to compromise his privacy and dignity by exposing himself to others and in addition it is not appropriate for other young people to be exposed to his naked body.' [4]
And later on:
'They deny that it is inappropriate to seclude C in the blue room when he is naked because of the need to protect his dignity' [28]
This trope of dignity seems to have originated in an Ofsted report:
'C's use of the garden area at the school is compromised by his behaviours and needs, not least his nakedness. The school has not been able to find constructive ways around a 2010 Ofsted inspection opinion that his personal dignity would be compromised were he to have access to the sensory garden at the school.' [53]
Dignity was repeatedly given as grounds for seclusion, but the court partially rejected this analysis.  They were strongly persuaded by the evidence of a consultant psychiatrist, that C's desire for nakedness arose from haptic oversensitivity, which resulted in neurological pain when he wore clothes.  The psychiatrist commented:
'The blue room must never be used as a punishment. Placing him in the room to preserve his dignity is in effect punishing him for removing his clothes. There is no evidence of him feeling that his dignity is compromised, it is the carers who are embarrassed while at the same time he is distressed because of his sensitivity i.e. the irritation or pain he feels. A programme should be developed which understands his needs to be unclothed and develops strategies to help.' [77]
The consultant notes that C does not seem to feel that his dignity is compromised by his nakedness; nevertheless the court concludes:
It is in C's best interests for his dignity to be protected by him being clothed e.g. when visitors and residents other than staff and his mother and brother are present in the communal areas of his accommodation but having regard to C's sensory need to be naked, restrictions on his choice to be so must be minimised. [16]
Dignity is explicitly brought into tension with autonomy in this passage, and their competing demands on justice and 'best interests' are acknowledged.  It is not argued that C will suffer in any way because his dignity is compromised; it is sufficient in itself to affect his 'best interests'.  The ruling indicates that 'dignity' is determined - at least in part - by the values of the community and not solely by those of the person whose dignity is implicated.

Today's judgment in McDonald v Kensington and Chelsea is the final (domestic) instalment of a closely followed social care case.  Elaine McDonald had been a prima ballerina, she had suffered a stroke and several falls in later life and consequently had very impaired mobility.  She also had a small and neurogenic bladder which resulted in urinary frequency, although she remained continent.  When she had been discharged from hospital she had received overnight support from carers, who assisted her in getting to the bathroom.  Later on, the Royal Borough of Kensington and Chelsea sought to withdraw this assistance and offer Ms McDonald, in its place, incontinence pads and sheets.  McDonald sought judicial review of this decision on various grounds, but her claims were rejected in the High Court and the Court of Appeal.  The Supreme Court considered various aspects of community care law: whether a review amounted to a reassessment of needs; whether the council were operating any policies that contravened the Disability Discrimination Act 1995, or whether they had failed to have regard for the general disability equality duty contained therein.  McDonald also sought judicial review on Article 8 grounds, arguing that it was engaged because withdrawing night time support had exposed her to risk and indignity (High Court, paragraph 27; Court of Appeal, 63).  Insofar as the hearings revolved around dignity, I want to consider the competing uses the term is put to by the local authority (and judges finding in their favour) and the claimant and interveners (and Lady Hale, alone, of the judges).

For the local authority, regardless of what Ms McDonald felt, incontinence pads better protected her privacy and dignity than support from a carer overnight:
'Mr Brown [a service manager in the Royal Borough's adult social care department] referred to the care plan reviews discussed above, and gave evidence in support of their conclusions. He said that he remained satisfied that the use of pads was appropriate notwithstanding Ms McDonald's objections. It was the Royal Borough's view that such products provided greater privacy and dignity than the presence of a carer assisting with personal and intimate functions at night, it minimised the risk of falls and provided the safest environment.' [Court of Appeal, 27]
The Court of Appeal (in the form of Rix LJ) supported the Royal Borough's analysis of what would best promote Ms McDonald's dignity:
'I reject Mr Cragg's submission that there has not been a reassessment of Ms McDonald's needs, or that such a reassessment has not founded itself on the analysis that Ms McDonald would be safer, more independent, and achieve greater privacy and ultimately dignity, if she consented to the use of pads.' [55]
It is clear however that Ms McDonald did not share either the Royal Borough's or the Court's view of what measures would best promote her dignity.  As someone who was continent, the enforced reliance on incontinence pads and sheets was a source of horror to her, and experienced as 'affront to her dignity' (Court of Appeal [2], [24], [25]).  It is arguable, in the case of C, that had he understood the significance of nakedness in social contexts, he would have experienced it as undignified.  Incapacity could potentially provide grounds to impose a particular view of dignity upon a person.  However, unlike C, we have no reason to believe that Ms McDonald was unaware of the social significance of the matter in question.  Ms McDonald was perhaps all too aware of the social significance of being forced to actively soil herself (despite being continent), and then remain in soiled pads and bedding overnight until a carer could support her to get changed.  Whilst differing views on whether this is undignified should be acknowledged, it is difficult to deny that as things stand few people would actively choose this situation.  In any case, there is surely a significant difference in terms of dignity between choosing to use incontinence pads, and having them forced upon one when one is - additionally - continent.  Asked why most people would be averse to it, it is hard to find a word that better fits than 'indignity'.  If we wanted to, we could throw in health reasons as well; in a recent paper Luke Clements has highlighted the relationship between reliance on incontinence aids and depression, as well as skin breakdown.  But these were evidently not considered of sufficient import to undermine the care plan, or to engage Article 8.

In the Supreme Court, Lord Brown considered Ms McDonald's Article 8 claim.  After reviewing some Strasbourg jurisprudence, Lord Brown commented on 'the hopelessness of the article 8 argument in the present case' [16].  The comment is evidence, if ever any were needed, that even our most senior domestic courts still operate a 'mirror principle', feeling bound not to exceed or build upon a perceived 'ceiling' in human rights values in European case law (see Klug's comments in oral evidence before the Joint Committee on Human Rights, here - pdf).  Lord Brown contrasted Ms McDonald's plight with that of Mrs Bernard in Bernard v London Borough of Enfield (2002); a woman whose care needs were left completely unmet, and who was doubly incontinent and immobile, and forced to urinate and defecate  on the living room floor in front of her family.  Lord Brown commented 'what is striking about Bernard is the contrast between that case and this'.  There is, of course, a gradient of suffering and indignity - and all cases will be placed along it.  At law, a line must be drawn somewhere, and in many ways this case has been about where to draw that line.  Lord Brown seems to have little hesitation in drawing it below urinating and defecating on one's living room floor, but above doing the same in one's bed.  Several respected organisations have disagreed with his decision.  Age UK commented in a press release:
'Today’s decision is shameful.  Older people have a fundamental right to dignity and forcing someone to sleep in their own urine and faeces could not be more undignified. This judgement opens the door to warehousing older people in their own homes without regard to their quality of life.'
John Wadham, the director of the Equality and Human Rights Commission expressed his disappointed with the ruling (here), and linked it to wider findings by the EHRC that older people's rights and dignity are poorly protected in home care services:
'Local authorities will now have greater discretion in deciding how to meet a person's home care needs and will find it easier to justify withdrawing care. This means that older people's human rights to privacy, autonomy and dignity will often be put at serious risk.
'The Court has missed a significant opportunity to interpret the law to protect some of the most vulnerable people to harm in society. The Commission's inquiry into care in the home has already highlighted some of the problems with the current system of home care. This judgment will only fuel those problems.'
As Ms McDonald was not faecally incontinent and had no trouble with her bowels [27] there was some discussion by their Lordships as to whether the ruling would also be taken as condoning practices that might leave people lying in faecally soiled clothing or bedding.  It has to be said, their Lordships sounded distinctly uncomfortable and irritated that Lady Hale had even raised this possibility, and thus required them to deal with it.  Lord Walker stated:
Mr Brown referred to a possible need to pass faeces at night, but noted that it had not been raised as an issue at the most recent review. In view of this I find it rather regrettable that Lady Hale’s judgment makes so many references to defecation. She says, at the end of para 77, that the consequences (of what she describes as the logical implications of the majority decision) do not bear thinking about. But in this case we do have to think about urine and faeces. For an adult to use incontinence pads for urination may be quite unpleasant for both the user and the carer, but most people would agree that it is a good deal less unpleasant and undignified than their use for defecation. I totally disagree with, and I deplore, Lady Hale’s suggestion that the decision of the majority would logically entitle a local authority to withdraw help from a client so that she might be left lying in her faeces day and night, relieved only by periodic changes of absorbent pads or sheets. [32]
Given that their Lordships view of 'dignity' departs so far from the consensus view of the respected NGO's quote above, of Ms McDonald's own view, even of the Daily Mail's view of dignity in care, I'm not so sure how obvious it is that the judgment wouldn't have been taken that way by some local authorities.  When one takes a term like dignity, and castrates it of all ordinary meaning to serve a particular end, lawyers should not be surprised if others extend that meaning yet further in that direction than they might have intended.  In any case, however 'deplorable' Lord Walker might find Lady Hale's suggestion that some local authorities might view themselves entitled by the judgment to leave a person ' lying in her faeces day and night', at least her comments prompted him to write this passage, which would undermine any attempts to do so.

Reading the judgments in McDonald v Kensington and Chelsea my mind was drawn to a point about dignity made by Catherine Dupré in her piece for the Guardian:
'Every breach of human dignity not only affects the individual victim, but also society as a whole, by raising the question of how we choose to live (and die) and relate to each other.'
To me the ruling says a great deal about how we as a society choose to relate to each other, and in particular how we are choosing to relate to those most vulnerable and most in need. As a consequence of this ruling thousands may be forced to experience circumstances that few would hesitate to characterise as distressing and undignified, or at best uncomfortable.  Resources are a perennial problem for local authorities, and it is not necessarily morally incoherent for a local authority to only offer incontinence pads to promote dignity rather than night time support if it really were the only possible option that they could feasibly afford.  There are wider questions to be asked though, political questions, about a system of social care funding that forces local authorities to make such decisions.  I am reminded of the comments of Lord Lloyd in Barry v Gloucestershire County Council (1997):
'The passing of the Chronically Sick and Disabled Persons Act 1970 was a noble aspiration. Having willed the end, Parliament must be asked to provide the means.'
What I find most abhorrent, dangerous even, about the ruling is the way in which it was done.  For the Supreme Court to have said to Ms McDonald, 'We are very sorry, but whilst we recognise this is an affront to your dignity, it is simply unaffordable to support you in the way you would prefer', would at least have acknowledged the reality of the situation.  That we live in a society that would rather keep free entry in  museums and art galleries than grant the elderly and infirm the human dignity they deserve.  Instead, the term was used to promote a lie: that this outcome was better in some way for Ms McDonald.  If things were a different way, if the pads were significantly more expensive than supporting Ms McDonald to get to the bathroom at night - I have no doubt that the local authority would not have forwarded this argument, that they would not have fought her in court to accept the more 'dignified' option.  At base, this was a case about money.  The local authority's disingenuous arguments about dignity inflicted upon her the separate and additional indignity of denying her experience.  By accepting their argument the Court compounded this.  It may well be that by having done so, social care staff will feel better about the terrible decisions they are being forced to take by the current economic and political climate. Perhaps it will also help their Lordships will feel better about the ruling.  I doubt Ms McDonald or those affected by the judgment will sleep any better as a result of their assurances though.

4 comments:

  1. Good post and good timing as usual. I have been pondering this issue for some time and as it stands I don't think we are currently there in terms of where the bar is set by the courts.

    Dignity and access to services began in ernest in the Uk from a human rights angle in the 90's in particular when we saw a relatively steep rise in asylum applications and the concomitant removal of access to health and social care provision unless there was a breach of ECHR rights.

    It was a period of time that i believe led to the incorporation directly of the ECHR into UK domestic legislation via the HRA 98.

    I believe we are now into a new phase of this with the Dilnot review and the move into co-funding etc.

    Dignity in some senses is linked to aspiration and expectation: that is the personal and the organisational.

    Currently our social care systems don't aspire to dignity: notwithstanding it theoretically exists in a variety fo policies. The response to Dilnot in some quarters as being about chasing the middle class vote is I feel a symptom of that lack of aspiration.

    I am working on some ideas around this and want to thank you Lucy as this helps enormously my thinking. I may reference this work if that is OK with you?

    kind regards

    Noel

    ReplyDelete
  2. Many thanks for an interesting introduction to this topic from a human rights point of view. You probably know about 'dignity in dying' and its opponents in the assisted suicide debate; some people think that 'dignity' there is a marketing tool concept for both sides. However, there is a research and practice debate about what is dignity in the nursing and social work field, which I'm just writing an article about for the journal 'Ethics and Social Welfare' and was pleased to learn about the points you are making. On my palliative care blog, there is a now somewhat elderly post with an account of some of the issues at that time: http://blogs.stchristophers.org.uk/one/2008/09/23/resource-document-dignity-in-care-policy/. There are other mentions of diginity if you search the archive of my blog. You may also find useful the Social Care Instiute for Excellence website on 'dignity in care': http://www.scie.org.uk/publications/guides/guide15/index.asp; SCIE organises the Department of Health work on dignity in care, and publishes a literature review, which you can download from its site. Its 'social care online' database also gives access to a wide range of social work literature, and you could probably find a lot of citations on dignity in health and social care in that. There is a very important recent publication on dignity in older people published as a result of a European study of older people: Nordenfelt, L. (Ed.)(2009), Dignity in care for older people. Chichester: Wiley-Blackwell.

    ReplyDelete
  3. Under these arrangements Ms MacDonald is expected to go to bed at 8.30pm!
    She is then left alone for 12 hours.
    A care assistant treating someone like this in a residential home would be accused of gross negligence because of the risk to health.
    I have seen a gangrenous bedsore so know that personal care is not just a matter of dignity.

    ReplyDelete
  4. Thanks Anonymous and Malcolm for your comments.

    Anonymous - you're quite right, the fact that Ms McDonald is left in bed for 12 hours isn't even mentioned in the judgment, only the Age UK press release. And yet that seems to me to be a major issue. To be honest, 12 hours is shorter than with some care providers I've seen...

    Thanks for the links to stuff on dignity Malcolm, I'll definitely look those up. I was reading the Law Commission's final report on Adult Social Care yesterday and came across this interesting passage on dignity:

    '4.35 We have also reviewed the other principles put forward at consultation. We remain concerned that concepts such as dignity and independent living are too imprecise to be expressed as statutory principles. The notion of dignity has been used by the courts in judgments which are addressing texts which do not use the word dignity. This suggests that while a legal structure can be constructed in a way that is conducive to dignity – or even in a way which undermines it – it is difficult to build a legal structure on the imprecise notion of dignity.'

    http://www.justice.gov.uk/lawcommission/publications/1460.htm

    It seems the term is not a favourite with law makers.

    ReplyDelete