Trust in aged care

Introduction

Care and trust

This section explains why trust is of central importance to what we will call “organized care”. This
latter term refers to care in modern societies that is mediated through economic and/or institutional
arrangements. In terms of aged care, this includes residential care, community care, respite care,
daytime care, and can even be extended to the state subsidization of family home carers. This
definition is preferred here over other distinctions like formal vs informal care, or public vs private
care. The opposite of organized care would be “non-organized care”, where there are no
organizations involved at all in the provision of care. In Australia, aged care is predominantly “semi-
organized care”, which is any configuration involving both non-paid (but perhaps financially
supported) care and formal services (Smith, 2019). The point is that once organizations (including
state organizations) become somehow involved in providing care, complex pathways of
organizational and systemic accountability are implicated which extend the possibilities of trust
beyond phenomena that emerge from non-organized family or interpersonal ties.

Defining care
Care is a tricky concept to define because it connects a broad semanticrange of meanings repertoire
(Gilbert, 2019), and can variously be taken to mean a type of instrumental task, an emotion, a type
of human relationship, institutional arrangements, or an ethical orientation (Fine, 2006). There has
been a wide-ranging debate about the meaning of care taking place across the humanities and social
sciences over the last few decades which cannot be summarized here. Yet underlining it is a
historical trend: a disruption of the normative assumption that caregiving ought to be handled in the
domestic sphere, with the expectation that caregiving should take place privately in the home and
performed predominantly by women family members of a person requiring care. These traditional
gendered expectations about care have been challenged (but not replaced) by the emerging
possibilities of organized care.

Traditionally organized care meant institutionalization, with the threat of “structured dependency”
where people are re-socialised into becoming docile and compliant dependants (Townsend, 1981).

However, a shift in emphasis is underway from notions of care as a social or familial burden, towards
care as a range of services consumers can choose from . This broadens what we mean by care
relations, as they are not solely encapsulated by the dyadic relationships between carer and cared
for, but also involve health and social professionals (Fine, 2004). It has also brought greater attention
to the perspective of the care recipient, with care figured as a service that is foremost undertaken in
order to maintain their dignity and quality of life rather than as an altruistic act or gendered
obligation of the caregiver.

New arrangements of managed care reduce this normative load – allow a more transactive
appreciation of care. Far from being alienating, it takes the perspective of the person receiving care
more seriously. Care providers are involved in an exchange and therefore obliged to follow
standards, offer services, care recipient also has more choice. Logic of choice has in turn been
criticized because it individualizes care and attributes responsibility to the person receiving it, who
must make the choices and must bear the consequences. Not a realistic appreciation of dependency,
both biological and socially constructed (kittay).
Person-centred care.

Division between instrumental understandings of care which focus on tasks of maintaining clean,
healthy, and calm bodies, and the relational

Svendsen, Navne, Gjødsbøl, and Dam (2018) have cut through a lot of the debate by defining care as
“substitution”. To substitute means to perform acts on another person’s behalf in a way that either
sustains or establishes the conditions for them living well. They argue for a context-dependant and
relational notion of personhood and suggest that the substitution efforts of those performing care
are contribute to the maintenance of a care recipient’s social self. Substitution can be a transactional
or ethical action. It is not necessarily benign, and it can be imposed upon or willed by the participant.
It may encompass instrumental tasks such as bathing, dressing, cooking, cleaning, transporting,
communicating, and so on. Yet it may also involve more complex or abstract matters like supporting
someone to begin or sustain relationships, or facilitating the maintenance of a person’s particular
identity through memory work, or supporting their participation in markets and institutions, and
more.

Crucial to this idea of substitution is that it acknowledges an assumption which is of central

importance in theorising managed care in the contemporary Western world: In an ideal situation,
substitution would not occur. Idea that ideally people should be autonomous individuals, able to
perform these things themselves. But in reality and in various different ways, people do not have
this autonomy and therefore require the substitutions of others to perform of their behalf. Notion of
autonomous individual may itself be unrealistic – does not apply to children, and may only apply to
an employed adult, traditionally a man but nowadays almost as likely to be a woman. Various
commentators have pointed out that this normative ideal of autonomous individual is unrealistic for
most people, or perhaps anyone. Autonomy seems like a vexed idea. But the whole point of a
normative ideal is that it does not have to be either clear or plausibly correspond to current realities
in order to still be culturally influential. Western notions of managed care centred around this:
Ideally people should be autonomous individuals who maintain conditions of their own lives
themselves, but sometimes they cannot and there are people, organizations and systems which can
substitute for those aspects of their life they cannot perform autonomously. As life expectancies
increase it is increasingly likely that we will make used of these services in older age. Cannot rely on
the care work of women in the family to do this anymore, because of the feminization of labour
(Fine). There has been the growth of government, not-for-profit and private services which perform
this substitution. Consisting of people like care staff, managers, etc; organizations like aged care
homes, ACAT services, etc,; larger institutional “couplings” like funding, regulation, training, etc.
Taken together all these things comprise of the aged care system

Define the fourth age as opposed to the third age . Point out that third age associated with
autonomy, choice, pleasure, freedom from the constraints of the labour market. Opposed to fourth
age which is associated with frailty, abjection, and the need for care. If the third age is culmination of
autonomous individualism, the fourth age is cancellation of it. Organized care is inevitably
asymmetrical, as its function is defined by situations where the care recipient is less able to look
after themselves than the person providing care (Gilleard & Higgs, 2018).

Defining trust
Trust is crucial to this system because people, organizations, and institutions are non-transparent
and complex. Non-transparency and complexity is not the consequence of a concealment of
information, it is an inevitable effect of things performing their role. The future is unpredictable, and
you can’t account for every possibility. A man cannot be absolutely certain that tomorrow the staff
in the residential care home he lives in will support him to get ready in time for outing he has
planned. But the assumption they will is trust. Decision to book tickets depended on this trust in the
first place. Interpersonal, organizational, systemic. Trust that other people have an interest in his
well being out of an interpersonal acquaintance and desire to maintain a positive relationship, and
therefore will ensure the substitution work is performed. Trust that the organization has a both an
interest in its reputation, as well as internal procedures that operate to ensure his needs are met.
Trust that he is situated in a context defined by legislation, regulation, etc. which standards are
ensured and breaches penalized. Staff are educated, etc. When we view the aged care system from
the outside, as members of the public, and doubt that it is fulfilling these function in line with
interests or users or others we are talking about a lack of public trust.

Luhmann’s phenomenological theory of trust holds that it is a way of managing world complexity.
There are two interconnected aspects of complexity: the simultaneity of time, and the non-triviality
of agents. The first means that complexity is fundamentally a problem of time rather than of the
amount of information. Events that affect you are happening simultaneously to your immediate
present, and beyond your ability to pay first-hand attention to them. Since it is impossible to keep
track of every event which could possibly be of concern to us, we have to trust by “bracketing” them
out and holding expectations about what will happen despite our inability to attend to them directly.
We will only know whether these expectations were fulfilled at that point in the future when they
become directly apparent to us. In the present we hold to these assumptions nonetheless because
to not do so in a modern society, where your life is profoundly interconnected with things beyond
your immediate control, just results in being paralysed by uncertainty. The non-triviality of others
just means that the actions of other people, and to some organizations and systems, are endowed
with agency and therefore behave in ways that cannot be fully determined. These non-trivial agents
also exist in time, meaning that changes in their social relations – changes you cannot attend to
owing to simultaneity – can affect their behaviour in ways you cannot anticipate. Trust

Recent calls for cameras in aged care homes. Clear illustration of a lack of trust. Simultaneity and
suspicion of intentions.

It is only about our capacity to understand or retain information insofar as doing so would consume
time, so we trust others (such as doctors) who deploy symbols (such as qualifications, displays of
expertise, or an authoritative tone) suggesting they have dedicated their time to specializing. A
residential aged care home is a good example of complexity because unlike popular perceptions of
medicine, individual events within it may not seem complex in of themselves, but when we consider
their simultaneity and their relational interdependence, we can see why trust is necessary.

Unfortunately, Anthony Giddens introduced some ambiguity into trust research when he argued
that trust is a result of childhood development, and particularly the warmth of relations between
mother and child. This implies that trust is foremost a psychological phenomenon, and therefore
that there are types of people who are more trusting than other types by virtue of their
psychological development. The psychological dimension of trust is of course important. After all,
trust is not just about calculating one’s interest in light of the future, and can be worth it for its own
sake. Psychologists find that people feel better about themselves when they are trusted, and are
happier when they confer trust to others. Conversely, often the emotional feeling of a betrayal of
trust is worse than any extrinsic losses that resulted from it. Nonetheless, the developmental aspect
is not the main thrust of the sociological understanding of trust outlined here. We are focusing here
on how trust shapes and is shaped by social relations.

Best interests
“Best interests” is another tricky concept. Care as substitution in a way that supports the conditions
of living well… is the same as substitution is in ones best interests. Substitution be divided into three
considerations. Instrumental, guardianship, conservatory. We don’t just trust to enact our best
interests, as if these are self-evident, but also trust that their definition of best interests is
commensurate with our own. Mol explores this in relation to care where best interests cannot be
reduced to maximising choice. Trusting in medicine means assuming that the doctor is in a better
position to judge best interests than we are. Conservatory – sustaining the conditions for human
flourishing, allowing a person to make the most of their capacities for relationships and meaningful
activities. Jennings (2001) distinguishes two goals of conservatory care: semantic agency and moral
personhood. Person-centred care. Comes into conflict with guardianship – increased fall risk where
PCC implemented. Either can be interpreted as a breach of trust – related to attitude, and not a
“rational” idea.

Types of trust
Trust in identities and trust in processes. Three different types of trust.

Interpersonal trust
As you disentangle yourself from your family or friends, you are simultaneously entangling yourself
with others, such as health care professionals or others with a similar condition to you (Mol).
Organizational trust
Dignity of risk

Accountability

Social revolution in aged care. Puts trust in the residents to manage their own activities.

System trust

PPublic trust

In September 2018 Australian Prime Minister Scott Morrison announced his government was
launching a Royal Commission into the aged care industry, stating: “Australians must be able to trust
that their loved ones will be cared for appropriately and the community should have confidence in
the system” (Hasham, 2018). The Royal Commission was launched to pre-empt an investigative
report by the ABC television program Four Corners which argued that the Australian aged care
industry was “in crisis”, and drew on crowd-sourced stories from members of the Australian public
to document disturbing incidents of neglect and abuse faced by residents of aged care facilities, as
well as broader dysfunction in the regulation and quality assurance processes of the aged care
industry. The report argued that “every day stories of neglect and inattention, poor quality food, lack
of personal care, boredom and heart-breaking loneliness” were typical for much of the industry
(Connolly, 2018). Now launched, the Royal Commission has called for further stories from the public,
through hearings and submissions, and these have prompted more media reports of incidents of
abuse, neglect, mismanagement and systemic failure.
and tThe current Royal Commission is the latest in a long line of government and independent
probes into the quality of Australia’s aged care industry (Productivity Commission, 2011; Smith,
2019). In another highly publicized incident in 2017, the Oakden nursing home in South Australia
was shut down by the State Government after a review by the South Australian Chief Psychiatrist
revealed disturbing incidents of assault, over-medication, and clinical neglect involving residents
with dementia and Parkinson’s disease had failed to be recognized by regulators (Gage, Donnellan, &
Harmsen, 2017). The incident prompted the Federal Minister for Aged Care Hon Ken Wyatt to
commission a review of quality in the aged care system as a whole, which argued that regulations
were overly focused on processes or “box-ticking”, with poor engagement with consumers needs
and expectations, and that providers are focusing on remaining accredited at the expense of
providing quality care (Carnell & Paterson, 2017).

The Australian Aged Care Quality Agency (AACQA) was established in 2014 as body that determines
the accreditation and ratings of aged care providers in accordance with the quality of care standards
specified by the Aged Care Act 1997. This was followed by the appointment of an Aged Care
Complaints Commissioner (ACCC) in 2016 to independently review and mediate individual
complaints against care providers. Accreditation ratings of aged care providers are published on the
Department of Health’s My Aged Care website and are intended to allow consumers a means to
review and compare aged care options. Mediatized scandals have a damaging impact on the public’s
trust in the implicated institutions (Alaszewski, 2003; Gille, Smith, & Mays, 2017; Gilson, 2003). The
AACQA and ACCC were established both to address shortfalls in public trust in the aged care
industry, by overseeing the evaluation of care facilities and independently administrating the
complaints process. Yet both of these bodies came under criticisms in the Four Corners report for
failing to act on complaints, and for retaining 100% accreditation ratings for aged care providers
after incidents of assault in their facilities had been exposed, and staff members criminally convicted.
Their perceived failures have only compounded the shortfall in public trust.

Miller and colleges examined the media portrayal of aged care in American newspapers and
concluded that a prevalence of negative perceptions about aged care among the American public
can be partially attributable to the mostly negative representations of nursing homes and nursing
home residents within the news media, with comparatively little coverage of positive aged care
stories or experiences (Miller, Livingstone, & Ronneberg, 2017; Miller, Tyler, & Mor, 2013).
Moreover, newspapers routinely “objectify” care-recipients as problems that must be managed,
especially those receiving state subsidized care (Rozanova, Miller, & Wetle, 2016). These kinds of
perceptions can influence people’s decisions about seeking care for themselves or their family
members (Mebane, 2001), and may constitute an erosion of what has also been termed “public
trust” in the aged care system (Gille, Smith, & Mays, 2016). Similarly, a British study used multimodal
discourse analysis to examine the way people with dementia are represented in news (Brookes,
Harvey, Chadborn, & Dening, 2017). They found a predominance of negative imagery, which invokes
connotations with death and frailty, as well as social isolation and dependency within aged care
settings.

In a recent survey by an independent consulting firm in Australia, only 18% of respondents reported
that they had “a high degree of trust” in organized aged care services (Faster Horses, 2018). In
another survey, the national director of UnitingCare Australia – a large non-profit aged care provider
– reported that some respondents claimed that they would “rather be dead” than live in residential
aged care (The Guardian, 2019). When we speak of public trust, we are speaking of these general
perceptions that people have of aged care organizations and the system when they view it from a
distance and are not closely involved in the internal processes. Media portrayals are dictated by
what is newsworthy rather than what is an accurate depiction of realities (Gilleard & Higgs, 2018).
Luhmann points out that public opinion circulates largely detached from organizational and systemic
realities, much of it being received through the media who tend to select surprising and dramatic
events rather than mundane daily realities (TS2). Consequently, a scandal can publicly appear as
symbolic of and therefore damning of the whole system, rather than as an isolated and extreme
“black swan” incident (Taleb).

Interestingly, the Faster Horses survey found that when respondents had a family member who
using aged care services, slightly more (25%) of them reported “a high degree of trust”. A hypothesis
for this is a proximity effect. As people become more proximate to social systems, such as the aged
care system, their relations with it become more complex. Asking members of the public from all
ages what they think about aged care is likely to garner responses from people who have
stereotypically negative views, have cultural anxieties, and less first-hand knowledge. Also less
awareness of the day to day bodily experience of living with frailty or disability, the kinds of things
that aged care substitutes for. The emotional complexities of caregiving for families. Exposure to
aged care through health professionals, peers, marketing, etc. The facework of the system. Hence,
qualitative studies showing that people are relieved to receive care as it increases their sense of
security.

Proximity – practical and generationalexistential. In the former sense, as people age or their family
members age, they come into contact with the aged care system. Meet individuals working in that
system, visit the organizations of the system and pay closer attention to their branding, services,
what differentiates them from one another, and they become more familiar with the regulatory
context… the My Aged Care system, the ways in which quality is evaluated, etc. Also the processes
internal and what is required. Interpersonal, organizational, and system trust come to replace the
media stereotypes. Nusem et al have argued that if we want to improve quality, people should be in
contact with services earlier, mediated by wellness services and social workers. Trust formed earlier
less likely to be a “forced choice” where people are channelled into care. Generational: Biggs and
Lowenstein point out that as we age our life-course priorities change, and this is a collective
generational experience. The life course priorities of middle-aged people are dominated by the ideal
of the autonomous individual mentioned earlier. Prospect of substitution is a direct threat to the
achievement of this ideal. But as generations age, they enter retirement, members experience frailty
and death, etc. a mature understanding of human co-dependence develops. Care is seen no longer
as a threat to the self, but as its preservation. Changes in the cultural symbolism of trust, but culture
linked to life course stages.

Biggs and Lowenstein argue that dominant culture is inflected with the life course priorities of
Middle age, which tend to be defined by autonomous individualism. As we age, best interests shift,
people are more likely to see substitution not as an erasure of their own agency but as the
facilitation of it as we come to recognise finitude. Statements like “id rather be dead” demonstrate
Lack of generational intelligence, or the ability to put yourself into the position of another age group
and understand their different historical experienceexperiences, lifve chances and different life
priorities relative to age. Expectations that in old age people remain productive and active,
dependency represents failure. Age otherness and depictions in the media.

Higgs and Gilleard argue that fear of fourth age is not just a consequence of malignant ideologies or
discourses (which could be reversed), but a manifestation of “existential and ontological dimensions
of human corporality and its physical limitations” (Higgs & Gilleard, 2019, p. 11) which long predate
contemporary ideologies.
 Australia’s aged care system into what it is today, such as the Quality Commission, which were
subject to critique in the Four Corners documentary. Reaction to scandals is often to increase
regulation and surveillance, the assumption that front line workers are culpable and if they are
managed better by the authorities, then consumers will trust the system more. But Brown suggests
the opposite is the case, as management incursions into day to day practices colonizes the spaces of
interaction between workers and consumers, eroding their ability to cultivate interpersonal trust
relations. Given all this, there is an urgent need to apply the conceptual tools of trust research to the
formal aged care sector.

The aim of this paper is to tease out the ways in which trust research can be applied to
contemporary issues facing the aged care sector.

A deficit of trust in aged care services has significant implications for the uptake of services, the well-
being of users and their families, the morale of the workforce, and the operations of service
providers, regulators, and social policy.

A note on empirical methods

We have argued that trust is an implicit social process rather than an explicit cognitive choice. This
has implications for the methods we use in trust research. A major limitation of the Faster Horses
survey listed earlier is that it asked “do you have a high degree of trust” with “yes”, “no”, “unsure”
alternatives. But we do not have to think about whether we trust in order to do so, and asking
people directly may not be the best way to measure trust

Phenomenology of trust: not thought about unless it is broken. Remains implicit until it's broken. A
social relation rather than a cognitive decision. The selection of trust is a social rather than cognitive
operation.

Implicit observation of “bracketing complexity”. A lot of research in anthropology and gerontological

nursing available which can be used.

Anecdotally, I recently presented at an ethnic senior’s community group where a man told me he
would avoid going to a doctor if he was experiencing any memory loss or confusion. He was
concerned the doctor might misdiagnose him with dementia, then lock him in a dementia ward and
force him to take psychotropic medication. He said “once you go in, you never come out” and
implied that dementia wards were full of drugged up people who did not belong there, and that
some of them had been friends of his. This man was not alone in thinking this, as others in the group
also expressed similar concerns. It is tempting to just dismiss these comments as paranoid or
misinformed – although diagnostic errors related to dementia do occur (Skinner, Scott, & Martin,
2016) – but they need to be taken seriously as the symbolism through which aged care, and
especially dementia care, is publicly perceived by some people.

Conclusion

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