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Ageism and Autonomy in Health Care: Explorations Through a Relational Lens

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Abstract

Ageism within the context of care has attracted increasing attention in recent years. Similarly, autonomy has developed into a prominent concept within health care law and ethics. This paper explores the way that ageism, understood as a set of negative attitudes about old age or older people, may impact on an older person’s ability to make maximally autonomous decisions within health care. In particular, by appealing to feminist constructions of autonomy as relational, I will argue that the key to establishing this link is the concept of self-relations such as self-trust, self-worth and self-esteem. This paper aims to demonstrate how these may be impacted by the internalisation of negative attitudes associated with old age and care. In light of this, any legal or policy response must be sensitive to and flexible enough to deal with the way in which ageism impacts autonomy.

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Notes

  1. Re C [1994] 1 All ER 819 [74] and subsequently ss. 2–3 Mental Capacity Act 2005; and for an academic critique of these provisions, see [56].

  2. See Re T (Adult: Refusal of Medical Treatment) [1993] Fam 95 [69, 75].

  3. Relational autonomy has been described as an ‘umbrella term’, focusing on the analysis of ‘implications of the intersubjective and social dimensions of selfhood and identity for conceptions of individual autonomy…’ [58, p. 4].

  4. These characteristics are sometimes considered as part of the broader concept of self-respect: [5].

  5. United Nations Open-Ended Working Group on Ageing, established by General Assembly resolution 65/182, 21st December 2010; [81].

  6. There is considerable variation in the terms used to describe the two visions of autonomy. Alternatives for the individualistic include: procedural, internalist, liberal and content-neutral. Alternatives for the relational include: externalist, socio-relational. This paper is not concerned with the subtle differences between each of these theories, and the terms individualistic or procedural autonomy are used to reflect the former, and relational to reflect the latter.

  7. Mental Capacity Act 2005, s 3(1)(a)–(d).

  8. Mental Capacity Act 2005, 2 1(4).

  9. Mental Capacity Act 2005 s. 1(2) ‘A person must be assumed to have capacity unless it is established that he lacks it.’

  10. Although this paper is not concerned with the feminist criticisms of the autonomous agent as being ‘male’ per se, i.e. the distinction between a feminine and masculine construction of autonomy, it is worth noting that a number of feminists have been critical of the atomistic conception of autonomy given its propensity for being orientated towards the masculine conception of the self. Naffine for example, argues that ‘[t]he autonomy of the individual…was explicitly reserved for the male’ [60, p. 105]. Similarly, Gilligan argues that ‘the capacity for autonomous thinking, clear decision-making, and responsible actions—are those associated with masculinity and considered undesirable as attributes of the feminine self’ [37, p. 17]. See also: [17, 59].

  11. Martha Fineman, one of the leading critics of autonomy on this count, argues that ‘[the] liberal subject…is indispensable to the prevailing complementary ideologies of personal responsibility and the noninterventionist or restrained state…The image of the human being encapsulated in the liberal subject is reductive and fails to reflect the complicated nature of the human condition’ [32, p. 17]. See also: [31, 55, 63].

  12. These ideas may seem individualistic in themselves, and therefore paradoxical to the argument that autonomy should be understood relationally, however there is a clear distinction to be made between saying that the values that autonomy upholds are individualistic, and that autonomy itself is individualistic. Simply because the values may be interpreted in an individualistic manner does not necessarily mean that their gatekeeper (autonomy) should also be.

  13. There is, of course, a body of literature that argues that autonomy is a ‘thoroughly noxious’ concept [44], however this seemingly ignores the values autonomy upholds, which is a primary focus of this paper and of relational autonomists in general. The assumption in this paper is that autonomy itself is an important concept because of the values it embodies, but the procedural account is unduly atomistic, and a relational model should be understood as the more appropriate conceptualization.

  14. Decisions made under such conditions may attract what Stoljar terms the feminist intuition, ‘which claims that preferences influenced by oppressive norms of femininity cannot be autonomous’ [79, p. 95]. Oshana explains this by arguing that being autonomous under the procedural conceptualisations of autonomy does not lack any socio-relationality, but that the agent’s ‘psychological condition…is alone important for her autonomy’ [67, p. 85].

  15. It is worth noting here, however, that Marina Oshana presents a ‘perfectionist’ account of autonomy, that is, someone who willingly and voluntarily surrenders their autonomy, such as the deferential wife, cannot be considered autonomous in doing so. The argument presented in this paper should be distanced from this perspective for two reasons. Firstly, because this perfectionist relational account fails to realise the idea that autonomy is a more flexible, non-binary concept (see below, n. 17). Secondly, Oshana’s account does not rely on the idea of self-identification as a central tenet of autonomy, which this article does.

  16. See, for example: [36, 64, 83].

  17. This idea in particular has been used in different contexts by different authors. For example, Schwartz [76] argues that the notion of ‘perfect’ autonomy does not exist, but rather that we should recognize its existence on a spectrum from minimal to maximal autonomy. Similarly, Donnelly [26, p. 41], drawing on the work of Joseph Raz, advances the idea that autonomy is an ‘achievement’, moving beyond this dichotomization of autonomy found in traditional health care law and ethics. She suggests that our ability to act autonomously is, in fact, continuously evolving towards a state of achievement, rather than being fixed.

  18. This idea is not just applicable to older people, but applies to any one of any age. The idea that autonomy is a two-fold process as presented here is, however, easier to see when illustrated in the context of old age where individuals may exhibit greater situational or pathogenic vulnerabilities, that is, those vulnerabilities that are context specific (situational) or those that are ‘generated by…morally dysfunctional or abusive interpersonal and social relationships and socio-political oppression or injustice’ (pathogenic) [54, p. 9].

  19. Although this aspect to relationality will not be discussed in any depth in this article, an example of this can be found in the McDonald [72] case. In R (McDonald) v Royal Borough of Kensington & Chelsea [2011] UKSC 33, the applicant sought judicial review of the decision of her local authority to remove the provision of night time care to help her access the toilet. This service was replaced with incontinence pads. Ultimately the Supreme Court held, Lady Hale dissenting, that the removal of assistance to use the toilet was lawful, and did not violate the applicant’s article 8 rights. On the analysis presented here, the provision of night time care would be indicative of enabling a maximally autonomous decision under the circumstances (the circumstances being that Elaine McDonald was not able to use the toilet without such assistance). Removal of the night time assistance reduced her ability to act in a maximally autonomous way. On the spectrum of autonomy presented in this paper, night time carers would represent a step towards maximal autonomy, incontinence pads would be on the spectrum somewhere below this. Of course this case also highlights how difficult courts would find it if they had to uphold only maximal autonomy, especially in light of increasing fiscal constraints on social care provision: [11].

  20. A continuous feature of empirical research in this area suggests that older people are continuously homogenized and misrepresented, or portrayed negatively in popular culture in many countries [82, 84].

  21. Recent proposals by the National Institute for Clinical Excellence (NICE) [24, 61], for example, suggest taking into consideration a treatment’s ‘wider societal benefit’, such as the patient’s capacity to return to work, as well as unpaid activities such as child-care, volunteering and domestic work. These proposals could potentially be ageist on two counts. Firstly, by placing these considerations at the centre of treatment decisions it places greater value on younger generations, who are more likely to be engaged in activities such as those listed above. Secondly, the term ‘wider societal benefit’ brings with it the assumptions that those who do not qualify are of little ‘benefit’ to society. Although not explicit, the ageism implicit in NICE’s proposals are both etymological and substantive; they reflect and reinforce the more broader assumptions made about older people as disengaged or unproductive, and of little social value [16].

  22. This is not a purely hypothetical example. Evidence of such practices have been highlighted in particularly in the following reports: [20–22, 46].

  23. Similar facts were found in recent Nursing and Midwifery Council fitness to practice hearings: [65, 66].

  24. This example is derived in part from one presented by Clough and Brazier’s in their recent article [16, p. 3]. This is also a good example of the ‘macro’ and ‘micro’ level ageism distinction highlighted above; the doctor’s ageist attitude may well have been informed by broader assumptions about older people, particularly older women, as ‘asexual’ [19, 80].

  25. This argument has been made previously in relation to victims of domestic violence. See, for example, [76, pp. 453–454].

  26. Of course, she may very well retain the potential to become a maximally autonomous agent if her cognitive functioning remains maximally operative: [4, p. 658]. The argument presented here is not concerned with the way that oppression may hinder our cognitive development.

  27. Although this may very well be the case. For example, if an older person is discriminated against because of an age based rationing policy then this may still have an impact on that particular person’s autonomy because of her age, but it is not akin to saying that her autonomy is curtailed because the way she views herself has changed.

  28. This is to take coercion in the legal sense such as in Re T [75] where there is direct coercion by one party over another’s decision.

  29. These points are of particular contemporary relevance given the increasing debate over the legalization of assisted suicide, and more specifically, the fact that the universal prohibition on assisted suicide is designed to protect those who may seek help ending their lives simply due to lowered self-worth, for example: R (Nicklinson & Anor) v Ministry of Justice [2014] UKSC 38 [73, at 311–315].

  30. Charpentier and Soulières’ recent study indicates that the desire to not be seen as a troublemaker is very much present when deciding what course of action to take by older people in residential homes: ‘I’m not doing anything to jeopardize my stay here. I like it here. So it’s best to keep quiet.’ (Mr. P., age 82 [translation]); ‘If we complain too much we get a reputation as old troublemakers! Grumpy old complainers! It’s easy to put negative labels on us. My philosophy is that if you want to be liked you have to be likeable. I do my best not to upset anyone.’ (Ms. M., age 96 [translation]) [13, p. 350]. A similar story (that of Betty) is presented by Les Bright: ‘Unhappiness and depression gave way to fear, itself accompanied by a decision to do or say nothing that would inflame the situation further’ [8, p. 193].

  31. We could, of course, always argue that there is an acceptance in this example of the subjugated role, or that autonomy is compromised because Elizabeth doesn’t want to upset her son, however neither of these threats are necessarily to do with the attitudes underpinning the actions in the first place.

  32. A study conducted in the Czech Republic by Buzgová and Ivanová [10] reported that only 11 % of care receivers noted some form of abuse, while even less (5 %) witnessed an act of mistreatment directed towards themselves or another older person in the institution. On the other hand, 27.8 % of staff surveyed noted that they themselves had psychologically abused a patient, and 42.1 % had observed another staff member psychologically and verbally abusing patients.

  33. Christman argues that ‘[t]o label such persons as non-autonomous because they do not stand in the proper social relations to their alleged “superiors” means that deliberations about the meaning of equality and legitimate authority is circumscribed to exclude voices who are otherwise…competent and authentic in ways that the procedural account of autonomy require’ [14, at p. 157].

  34. Above, n.15.

  35. Above, n.17.

  36. ‘While traditional accounts of authenticity refer only to the isolated agent reflecting on his or her own desires, relational accounts “think of autonomy in terms of the forms of human interactions in which it will develop and flourish” (emphasis added), [14 at p. 148], quoting Nedelsky [62, at p. 16].

  37. See, for example, Naffine [60].

  38. This has been a predominant criticism of mandatory reporting systems to tackle elder abuse: [30, 48].

  39. It is questionable whether such a response can be effected by the law. This would, of course, depend on the type of interference suffered warranting legal intervention, which is why I am tentatively advancing this suggestion. Whether the law (in the form of the inherent jurisdiction or the MCA) should intervene in turn raises questions as to when the law ought to intervene. Clearly it would be impossible, and undesirable, to suggest that the court involves itself wherever it suspects ageism, particularly as ageism and its effects may well be very subtle and unidentifiable. In light of this, it is also important to explore alternative responses, such as the importance of human rights principles, the role of regulatory bodies, and the role professional education for health care workers can have in combatting ageism, which is generally outside the scope of this paper, but may provide fertile ground for further research.

  40. [25] This case raised the legal issue of whether the inherent jurisdiction of the High Court remained to protect ‘vulnerable adults’ who do not fall within the remit of the Mental Capacity Act 2005. The case concerned an elderly couple who had been subjected to mistreatment by their son, DL, but nevertheless who retained capacity under the Mental Capacity Act. The Court of Appeal held unanimously that the inherent jurisdiction had survived notwithstanding the implementation of the Mental Capacity Act.

  41. [25, at 61], citing Lord Donaldson terminology in Re F (Mental Patient: Sterilisation) [1990] 2 AC 1.

  42. [25, at 64].

  43. In reality it is impossible to conceive of a decision that is made completely free from external pressures and therefore the most that can be hoped from any legal intervention is a removal of external pressures that may render the decision unauthentic.

  44. Such advocates can be appointed in certain circumstances to those who lack capacity under the Mental Capacity Act ss. 35–41, however it may be that one response is to expand the role of such advocates to be included within the inherent jurisdiction. For a general overview of the benefits of a state appointed advocate system for people with disabilities, see [33].

  45. See, for example, [49, 68].

  46. [1] The case concerned the application of Aintree University Hospitals NHS Foundation for a declaration that it would be in David James’ best interests to have certain intrusive medical treatments withheld in the even of a deterioration in his clinical condition (he was, at the time of the application, in a state of low consciousness). Mr James’ family, however, argued that while they understood that he could never regain full health, he still gained some pleasure from his current quality of life, in particular the visit from his family and friends. The Supreme Court found that when determining ‘best interests’, a subjective approach should be favoured. They also noted, however, that the Court of Appeal, despite erring in taking an objective stance, had, in fact, been correct to overturn the original decision given that Mr James’ condition had deteriorated by the time the case reached the Court of Appeal, and it would no longer be in his best interests to provide invasive life-sustaining treatment by that point.

  47. By using Aintree as an analogous case here, I am not advocating the use of the Mental Capacity Act in such cases. There are, of course, those where the older person may well lack capacity under the Act’s provisions, however the use of Aintree is simply to highlight that holistic and semi-relational approaches to an individual’s welfare have begun to be recognized by even the highest appellate court in other contexts, and therefore there is no impediment, at least in theory, as to why this type of approach could not be taken elsewhere.

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    Laura Pritchard-Jones

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Correspondence to Laura Pritchard-Jones.

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Pritchard-Jones, L. Ageism and Autonomy in Health Care: Explorations Through a Relational Lens. Health Care Anal 25, 72–89 (2017). https://doi.org/10.1007/s10728-014-0288-1

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