risk insight - dignity of risk in residential aged care

Context: setting the sceneWhile the majority of older Australian’s are well and live independently in our community, there is a growing recognition of the need to strengthen arrangements for older people in Australia to maintain their health and quality of life.

According to the Australian Bureau of Statistics, Australia’s population of 22.6 million is ageing and last year there were 3.1 million people over the age of 65 years. Furthermore there is a small and significant proportion living in Residential Aged Care Services (RACS). In 2009, there were 2,783 RACS providing permanent accommodation and care for 158,885 older persons (Australian Institute of Health and Welfare, 2010). On average, the resident’s lived in their Residential Aged Care Service for about 2.8 years (Australian Institute of Health and Welfare, 2010). For the vast majority of residents (90%), it was their last home (Australian Institute of Health and Welfare, 2010).

Living long or living wellAs we age, or perhaps, as we realise our life is finite and time is precious, the quality of our daily life experiences becomes increasingly important. Ideally, we would live a long time and live well. The reality is somewhat different.

Do we choose an activity with a rewarding short-term benefit to our quality of daily life at a cost of potential detrimental effects to health? Or, are we willing to sacrifice our immediate quality of daily life for a long-term health benefit?

In this context it is crucial both the negative and positive outcomes are described. Negative outcomes are expressed as an adverse event to our health. The positive outcomes are increased social participation, personal growth and quality of life.

Quality of life and ‘dignity of risk’Being autonomous and being permitted to take risks is a key component of dignity, which is a fundamental aspect of a person’s quality of life. Therefore, an individual’s dignity is eroded when not permitted to take risks.

The concept ‘dignity of risk’ stems from this idea. Essentially, our quality of life is linked to being able to take risks of our choosing and not to have these choices taken away from us.

The Commonwealth’s Charter of Residents’ Rights and Responsibilities captures the ‘dignity of risk’ concept with the statement:

“Each resident of a residential care service has the right to maintain his or her personal independence, which includes a recognition of personal responsibility for his or her own actions and choices, even though some actions may involve an element of risk which the resident has the right to accept, and that should then not be used to prevent or restrict those actions.”

‘Dignity of risk’ and decision-makingFor people living in the community their ability to make decisions and take risks of their choosing usually remains intact as they get older. The social, community and legal basis is clear and consistent when an individual has the capacity and competence to make their own choices.

The situation for people living in residential aged care services is more complex.

Along with the multiple chronic co-morbidities (for example cardiovascular disease, chronic pain, respiratory illness and diabetes), approximately 60 per cent of individuals living in RACS have dementia and 27 per cent suffer from a mental illness (Australian Institute of Health and Welfare, 2010).

The cognitive and physical impairments accompanying these disorders may limit the capacity of residents to fully understand the hazards and accept the risks associated with their lifestyle choices and preferences. Therefore, decisions relating to the acceptability and benefits of residents’ risk-taking choices are often distributed between the resident, their family, health professionals and other RACS staff.

This creates a situation of competing interests that are often difficult to satisfactorily resolve, as each group is guided by their personal, professional values and their interpretations of community expectations. The key groups involved in decision-making around ‘dignity of risk’ are the individual resident, internal RACS stakeholders, and external stakeholders.

Each of these stakeholders has differing needs and mandates:

(1) The individual resident (generally speaking) wants to reach and maintain the highest possible quality of life.

(2) The internal RACS stakeholders (those who are at the point of care, involved with the day-to-day decisions that affect the life of the resident and are usually visible) are mandated to serve the best interests of the individual resident and the other residents living in the RACS.

(3) The external stakeholders (those with direct influence on describing, assessing, enforcing and investigating potential breaches of the implicit and explicit rules governing societal expectations) are mandated with serving the whole of the community rather than the individual resident.

This presents the sector with the challenge of balancing, and where possible, fulfilling the competing needs and mandates of each stakeholder.

Social changesRACS staff face a number of challenges, including identifying and minimising the risk of harm associated with a resident’s choices without eroding dignity and ensuring the decision maker (or proxy) has the requisite information and authority to make their decision. Staff must also ascertain if the resident (or their

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proxy) understands the hazards and accepts the risks and also assist residents who may lack the physical ability to enact the lifestyle choices.

There is also an ongoing resourcing issue between identifying and minimising the risk of associated harm and enabling the resident to enact their choice without unreasonably disadvantaging co-residents and colleagues.

These challenges have increased over the past few decades because residents are frailer with significant cognitive and

physical impairments and changing societal values and expectations place a much greater emphasis on quality of life.

The recently proposed reforms to the Commonwealth Aged Care system (Department of Health and Ageing, 2012) and Victorian State Guardianship and Administration Laws (Victorian Law Reform Commission, 2012) reflect society’s increasing concern with how we accommodate the needs of our ageing population. How we manage the ‘dignity of risk’ in residential aged care is a timely issue for discussion.

Discussion topicsRoundtable participants considered the following questions:

Topic 1: Adhering to current standards: Is it possible to put the existing external stakeholders’ standards about ‘dignity of risk’ into practice?

Topic 2: Balancing ‘dignity of risk’ with safe care: How do we balance providing safe care with the resident’s right to take risks?

Topic 3: Balancing the needs of the individual within their community: How do we balance the dignity of an individual with the dignity of their community (for example, other residents and staff)?

Topic 4: Translation of principles into the real world: Is it possible to develop practical decision-making frameworks for use by a wide range of staff in RACS?

Topic 1: Is it possible to put the existing external stakeholders’ standards about ‘dignity of risk’ into practice? There are a number of standards regarding practice and responsibilities in respecting an individual’s dignity of risk found in statements of human rights, consumer rights, the health professional codes of practice, government and regulatory authorities charters.

In Australia, the Commonwealth’s Charter of Residents’ Rights and Responsibilities and the Aged Care Standards and Accreditation Agency’s Accreditation Standards explicitly document these rights.

While these statements describe key principles, understandably there are often differences of opinion about how and whether the principles are being translated into day-to-day practice.

Much of the debate centres on whether the principles are too abstract, and the degree of guidance required assisting internal stakeholders in how to approach decisions concerning ‘dignity of risk’.

the roundtable participants were asked: “is it possible to put the existing external stakeholders’ standards about ‘dignity of risk’ into practice?”The general consensus was that existing standards could and should be put into practice.

The perceived barriers to putting the existing standards into practice included lack of a systematic approach to defining, articulating and documenting decisions, a risk averse culture in the aged and health care sectors and the broader community and resources constraints.

A systematic approach to defining, articulating and documenting decisions requires an ability to (a) consider the pertinent information to arrive at a reasoned decision, (b) explain the decision to relevant stakeholders, (c) enact the decision and (d) modify the decision as and when new information becomes available.

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(a) Considering the pertinent information to arrive at a reasoned decision requires sufficient resources (time and expertise) to identify:

•Resident’schoiceorpreference

•Hazardsassociatedwiththeirchoice

•Negativeandpositiveconsequencesfromexposuretoidentified hazards

•Likelihoodorriskofidentifiedconsequencesoccurring

•Considerationofoptionsoralternativesforthehazardsandrisk to be minimized or eliminated without decreasing the intrinsic value of the activity to the resident

•Considerationofwhethertheresidentortheirappointedrepresentative are willing to accept the risk of negative consequences and the proposed hazard and risk minimization strategies.

(b) Explaining and documenting the decision to other stakeholders requires the resources (time and expertise) to identify and communicate with the other relevant stakeholders, including:

•Resident’sfamilyandcarers

•RACSstaffwhohaveanalternateview

•Externalstakeholderswhomayjudgethedecisioninretrospect if harm occurs.

(c) Enacting the decision requires sufficient resources (time, expertise and finances) to:

•Enabletheresidenttocompletetheactivityor

•Justifyandmanagethecircumstancesthatmayarisefornotenabling the resident to complete the activity.

(d) Modifying the decision as and when new information becomes available. This requires:

•Regularreviewoftheresident’sphysicalandcognitiveability

•Reappraisalofthehazard,risksandchangingcontexts.

Where will these resources come from?Several participants suggested that resources currently being expended in passively responding to issues related to ‘dignity of risk’ (for example dealing with complaints and litigation) could be redirected to fund proactive changes capable of preventing consumer dissatisfaction. It was also noted that a more detailed admission process include the risk associated activities. This information should be obtained from the resident and/or their next of kin, as appropriate.

“The most important person you can add to an aged care facility is a psychologist who solely deals with the family members. It reduces the stress for the residents, the family members, the staff and the external health carers more than any other single thing.”Dr. Richard Bills, Central Highlands General Practice Network, General Practice Victoria

Cultural changeRoundtable participants were also of the opinion that the time had come for cultural change within the whole community. For example, the widely accepted incident reporting forms required after a resident falls requires an analysis solely focussed on prevention of harm, but it does not explicitly consider whether the fall is a consequence of a decision for quality of life.

For the aged care services sector to achieve the necessary changes for older people requires moving from a culture of risk aversion to risk tolerance. It also requires an understanding of balancing competing needs.

To achieve this, cultural change requires:

•The“debunking”ofmythssurroundingtheoverarchingimportance of risk management within the aged care sector.

•Reframingtheexpectationsofresidentsandtheirfamilies.Explaining there are risks associated with activities that enhance quality of life, that living in a RACS came with responsibility and potential compromises associated with shared housing.

•Reframingexpectationsofthecommunity.Explainingthatthesimplistic notion of older people should be ‘kept safe’ in RACS is only one aspect to quality of life. That injury or death may be a consequence of a resident actively participating in life.

•Reframingtheperspectiveofagedcareandhealthcareprofessionals from the notion of “do no harm” in RACS to a more active appraisal of what enhances a residents’ quality of life.

•Encouraginganopendialoguebetweencareprovidersandconsumers by highlighting to care providers the benefits of full disclosure and informed consent prior to entry (e.g. reduced consumer dissatisfaction).

•Seekamoreactiverolefromtheresident’sfamilyandfriendsto support the activities the resident wishes to participate in. This may require resources from the RACS but could be managed with support from other options.


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summary and next stepsSummary of issuesThe following issues were emphasised in the discussion:

It is possible to adhere to the current standards promulgated by existing external stakeholders about ‘dignity of risk’. This will require several changes to enable internal stakeholders to reach a reasonable decision, explain the decision to other stakeholders, and enact the decision. These changes can be achieved via reallocation of existing resources, and transition within the sector from a culture of risk averseness to one of greater risk tolerance.

•Balancing‘dignityofrisk’withsafecareisachievableviamodels adapted from the disability sector, such as planned risk-taking, and sincere efforts to reach acceptable compromises when a resident’s choice may not be reasonably enacted.

•Itispossibletobalancetheneedsoftheindividualwithintheir community. This requires evaluating the individual resident’s desired choice according to whether its impact on others is reasonable, necessary and justified. Shortcomings of this ad hoc approach include its reliance on value judgments by powerful stakeholders, and tendency to preferentially serve more outspoken residents or their representatives

•Mechanismstofosterbettercommunicationandconsultationneeds to be systematic.

•Translationofprinciplesintotherealworld.Realworldapplication may be achieved via development of a decision-making framework for use by staff with sufficient expertise and training in complex decision-making (for example management and registered nurses).

Possible next stepsA number of options for addressing the issues were canvassed:

•Reframethediscussionof‘dignityofrisk’fromtheacademicand regulatory context into an operational context by greater engagement with RACS providers, staff, residents and families

•Promotionofrisktoleranceandconcernforresidents’qualityoflife at the organisation and community level

•Developmentandvalidationofastandardised,nationallyaccepted decision making tool or guide for use by senior clinical and managerial staff

•Strengthentheeducationofconsumersabouttheirrights(forexample consumer fact sheets relating to ‘dignity of risk’ in the aged care setting)

•Strengthencommunityandagedandhealthcarestaffunderstanding of capacity and competence, to improve understanding that residents with cognitive impairment can and must be involved in decision-making

•ImprovementoftheRACSinductionprocessinordertoreframe expectations of consumers’ about the nature of safety and allocation of resources to individual residents

•EducationofRACSstaffclarifyingtheirprofessionallegalandethical obligations to reduce unnecessarily risk-averse practices

•Changeexistingdocumentationprocesses(suchasincidentreport forms) to reflect priorities relating to both ‘dignity of risk’ and improved safety.


ReferencesAustralian Bureau of Statistics (2011). 3101.0 - Australian Demographic Statistics, Jun 2011.

Australian Institute of Health and Welfare (2010). Residential aged care in Australia 2008-09: a statistical overview, from http://www.aihw.gov.au/publication-detail/?id=6442472446

Department of Health and Ageing (2012). Living Longer. Living Better, from http://www.health.gov.au/internet/publications/publishing.nsf/Content/ageing-aged-care-reform-measures-toc

Department of Health and Ageing (2004). Decision-making tool: Responding to issues of restraint in aged care, from http://www.health.gov.au/internet/main/publishing.nsf/Content/ageing-decision-restraint.htm.

Perske, R. (1972). The ‘dignity of risk’ and the mentally retarded. Mental Retardation, 10, 24-27.

AS/NZS ISO 31000:2009, Risk Management - Principles and Guidelines

Victorian Law Reform Commission (2012). Guardianship: Consultation paper 10, from http:// apo.org.au/research/guardianship-consultation-paper-10


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