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Supported Decision-Making for Aged Care Providers

Dr Craig Sinclair

Sue Field

Cognitive Decline Partnership Centre Activity 24: Supported decision-making and dementia

I N V E S T I G A T O R T E A M :

D R C R A I G S I N C L A I R , S U E F I E L D , K A T E G E R S B A C H , M I C H E L L E

H O G A N , J U L I E B A J I C - S M I T H , P R O F . R O M O L A B U C K S , A / P R O F .

M E R E D I T H B L A K E , K A T H Y W I L L I A M S , A / P R O F . J O S E P H I N E

C L AY T O N , A / P R O F . K I R S T E N A U R E T , P R O F . M E E R A A G A R , P R O F .

C A M E R O N S T E W A R T , H E L E N R A D O S L O V I C H , M E R E D I T H G R E S H A M ,

D R A N G E L I TA M A R T I N I , P R O F . S U S A N K U R R L E

Twitter: @nhmrc_cdpc: @csinclair28

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Our partners

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United Nations Convention on the Rights of Persons with Disabilities (CRPD)

The Big Picture

Article 12 – Equal Recognition Before the Law

1. States Parties reaffirm that persons with disabilities have the right to recognition everywhere as persons before the law

2. States Parties shall recognize that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life

3. States Parties shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity

4. States Parties shall ensure that all measures that relate to the exercise of legal capacity provide for appropriate and effective safeguards to prevent abuse in accordance with international human rights law

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“We’ve just been told that they haven’t got capacity, so they don’t get involved with any of their decision making. We don’t ever ask them, we always ask the next of kin.”

(Residential aged care facility manager, 2015)

(Lawyer)

(Doctor)

(Family carer)

The Mismatch

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Supported decision-making in dementia

• Cognitive Decline Partnership Centre: “…aims to improve the lives of people with dementia by developing, communicating and implementing research that improves care.”

• ‘Planning for later life’ stream

• Legislation, case law and tribunal hearings

• Policies of aged care service providers

• Interviews with people living with dementia and family caregivers

• Interviews with professionals

Consumer representatives: Kathy Williams, Ann Pietsch, Theresa Flavin, Mike Barry, Vicki Barry, Ron Sinclair, Cate McCullough, Karine Shellshear, Darcelle Wu

Partner organisations: Helping Hand Aged Care, Brightwater, HammondCare, Dementia Australia

Advisory group members: NSW Office of the Public Guardian, SA Office of the Public Advocate, SA Department of Communities and Social Inclusion, Alzheimers Australia (NSW, SA, WA), Carers Australia (NSW, SA), LASA NSW, Australian Aged Care Quality Agency, COTA SA, NSW Elder Abuse Helpline & Resource Unit, Seniors Rights Services NSW, Advocare, Partners in Culturally Appropriate Care NSW, Multicultural Aged Care SA

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AgedCare Dementia

• Lack of existing guidance for aged care providers• CDPC partner organisations• Consumer-directed care roll-out• Incoming single quality framework for aged care

Supported decision-making

“…the process whereby a person with a disability is enabled to make and communicate decisions with respect to personal or legal matters”

(United Nations, 2006)

A voluntary process

About the person’s own decision

Assisting person to understand

Assisting person to weigh options

Assisting person to communicate choice

Maintaining or building person’s decision-

making ability

Creating enabling contexts

Supported decision-making

vs ‘support for decision-making’

(Browning, 2014)

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Australian Law Reform Commission, 2014

“…if you’re a disability advocate as I have been for most of my working life the last thing you want to do is substitute decision-making and yet there are cases where I’ve come really close to that...”

(Liesel, care-partner of person living with dementia)

adapted with permission NSW Public Guardian, 2018

Substitute decision-making: A last resort

Will, PREFERENCE & RIGHTS

Will: A person’s intentions, longer term goals and values, reflecting “What’s important FOR me”

Preference: A person’s more momentary wants, desires and impulses, reflecting “What’s important TO me”

Rights (personal)

Rights (others)

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• The ‘empowered consumer’ vs ‘the real world’ of stress, uncertainty and coping

• Individualist vs relational perspectives

• Social context of decision-making vs declining social networks

• ‘Support to make one’s own decisions’ vs progressive cognitive impairment

• Independent, supported and substitute decisions intertwine – no clear ‘line in the sand’

• Access to familiar, trusted person vs isolation or histories of abuse, mistreatment or neglect

• Need for ‘taking time’ vs constraints of the setting (e.g. hospital)

• Dignity of risk vs duty of care

• Trained, specialist facilitators vs close, trusted family members

• Constraints - person’s will and preference vs options available, - time limitations for service providers

• Managing professional boundaries and conflicts of interest

KEY TENSIONS IN SUPPORTED DECISION-MAKING IN DEMENTIA

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INDIVIDUAL(personwithdementia)

INDIVIDUAL(spousepartner)

RELATIONAL

DECISION-MAKINGAPPROACHADOPTED

Independent

Joint

Supported

Substitute

DECISIONAL

EXTERNAL

• Typeofdecision• Importancetopersonwith

dementia• Complexity(cognitive&moral)• Risk• Timeavailable

• Acceptingcondition• Stressandburden• Beliefs&attitudesabout

dementia• Caregivingand

communicationskills

• Stageofdementia• Dailyfluctuations• Self-efficacy• Acceptingcondition• Acceptinghelp/advice• Preferencetohave

controlordelegate • Relationshipquality• Trustandfamiliarity• Relationalhistoryofdecision-

making• Relationalvaluessystem

• Influenceoffamilymembers

• Interactionswithprofessionals

• Institutionalprocesses

• Accesstoservices

• Accesstosocialnetworks

• Accesstoinformation

Perceivedimpactofdecisiononrelationship

Sinclair et al. International Psychogeriatrics (2018)

Factors influencing decision-making approach

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Background to policy analysis

•Supported Decision-Making based on UN Convention on Rights of Person’s with Disabilities and Australian Law Reform Commission National Decision-Making Principles – a shift away from existing paradigms•No specific legislation governing Supported Decision-

Making• Incoming single quality framework – replacing

previous aged care accreditation standards in the Quality of Care Principles 2014 (Cth)

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Aged Care Standards

• Quality of Care Principles• Phasing out of 44 Standards, 12 month transition to new single set

of standards (Aged Care Quality Standards), effective 1/7/2019

• Standard 1 – Consumer Dignity & Choice• Standard 2 – Ongoing Assessment & Planning with

Consumers• Standard 3 – Personal Care & Clinical Care• Standard 4 – Services & Supports for Daily Living• Standard 5 – Organisation’s Service Environment• Standard 6 – Feedback & Complaints• Standard 7 – Human Resources• Standard 8 – Organisational Governance

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Aged Care Act – incoming single quality framework

1.2 Each consumer is able to (and supported to as needed) exercise choice and independence, including to:

a. make decisions about their own care and the way that care and services are delivered

b. make decisions about when family, friends, carers or others should be involved in their care

c. communicate their decisionsd. make connections with others and maintain relationships

of choice, including intimate relationships

Other relevant Quality Standards: 1.1; 1.4; 2.2; 3.1; 3.2; 5.1; 6.4; 8.2; 8.3; 8.4

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Policy Analysis Framework

ALRC Principles

Subordinate 'Audit Domains'

Specific Criteria

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Study Design

• Aged care providers invited to participate:• submitting policies and procedures relevant to healthcare or

lifestyle decision-making

• nominate 1-2 senior staff (with policy role) for interview

• Independent policy analysis against ALRC National Decision-Making Principles

• Confidential, tailored feedback

• Aggregate findings reported publically

• Policy development guideline

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Organisations

Organisation Type of aged care services

Disabilityservices

provider?

Size Type

1 (p1, p2) Residential + Community Yes Large Not for profit

2 (p3, p4) Residential + Community No Large Not for profit

3 (p5) Residential + Community Yes Small Not for profit

4 (p6) Residential + Community No Small Not for profit

5 (p7) Residential + Community No Large Not for profit

6 (p8) Residential + Community Yes Large Not for profit

7 (p9) Residential + Community No Large Not for profit

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Results - Snapshot

• 3/7 organisations had specific published policy on capacity assessment

• 7/7 organisations referred to current state-based legislation on substitute decision-making

• High—level policy statements acknowledged care recipient rights to make decisions and receive support. But rare to see specific guidance on nature of this support. 0/7 referred specifically to ‘supported decision-making’.

• 0/7 organisations fully met Domains under Principle 3, ‘will, preference and rights’

• Domains under Principle 4 ‘safeguards to prevent abuse and undue influence’ typically ‘not met’ or ‘partially met’, except for restraint (fully met by 6/7 organisations)

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Principle 1

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Principle 2

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Principle 3

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Principle 4

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Organisational contexts

“They [problematic cases] might become more prevalent as time moves on because aged care is changing for a whole range of reasons, the people in it and the families that are attached to the people in it I think are changing aged care a lot and I think the government are changing it by the way they’re changing the funding.”

(Participant 4)

• Rapidly changing sector

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Policy Development & Implementation

• ‘Rigorous and transparent’ vs ‘agile and values-based’

“[Organization] has a philosophy of… being flexible and agile in terms of meeting individuals’ needs and taking risks for people in order to meet those needs. So if we don’t need a policy to ensure that we meet a regulation of some description… we tend not to have it.”

(Participant 7)

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Policy Development & Implementation

• ‘Change management approach’

“I suppose its about when policies are reviewed or looked at, because there’s only a few people that are involved in it, some other areas of the business aren’t represented in those discussions… and then they might go ‘this doesn’t work for us’… so they’ll just develop their own sub-procedures to manage it, and I think there’s a danger in that.”

(Participant 1)

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Policy Development & Implementation

“There is still a real challenge about allocating the resources to meet sometimes the external policy, idealistic view… I think we [aged care sector] share it and we want it but we don’t really have the means to achieve it and for us that can sometimes be quite demoralizing as a sector.”

(Participant 3)

• Idealistic views vs practical resource challenges

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Pre-emptive approach vs reactive response

“… if the residents, if they want to go out they have the right to go. We don’t lock people up or restrain people because they might be at risk of leaving the building. We would say we’ll get a volunteer to go with them for the walk and let them go.”

(Participant 6)

“… I operate an open-door policy and the residents can come and speak to me at any time and they do… and I suppose, it’s having that sort of relationship where you can then open up the more difficult discussions if you need to.”

(Participant 6)

“…we seem to be reactive… we have a root cause analysis procedure to investigate complaints or incidents. Wouldn’t it be far better to do a review of client experience or customer experience after admission as a routine? That to me would help.”

(Participant 9)

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Policy Guidelines – WHY?

•New, unfamiliar terminology

• Incoming quality framework

•Apparent indication that previous policy guidance and regulatory attention on restraint has influenced policy.

•Need for a pro-active, pre-emptive response

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Policy Guidelines –WHAT?

RESOURCES & IMPLEMENTATION

Supported decision-making

resources

Policy guidelines for aged

care providers

Pilot training package and webinars

Consumer guide and fact sheet

Short videos

Research & policy forum

Submissions to government inquiries

http://sydney.edu.au/medicine/cdpc/resources/supported-decision-making.php

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Thankyou

For health professionals and people providing (paid) dementia care:www.dementia-care.rcswa.edu.au

Prizes and interesting, reflective cases ☺

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Thankyou

For health professionals and people providing (paid) dementia care:www.dementia-care.rcswa.edu.au

Prizes and interesting, reflective cases ☺

REFERENCES

• Australian Law Reform Commission (2014). Equality, Capacity and Disability in Commonwealth Laws. Sydney, ALRC. 124.

• Browning, M., C. Bigby and J. Douglas (2014). "Supported decision-making: Understanding how its conceptual link to legal capacity is influencing the development of practice." Research and Practice in Intellectual and Developmental Disabilities 1(1): 34-45.

• Sinclair, C., K. Gersbach, M. Hogan, R. S. Bucks, K. A. Auret, J. M. Clayton, M. Agar and S. Kurrle (2018). "How couples with dementia experience healthcare, lifestyle, and everyday decision-making." International Psychogeriatrics: 1-9.

• Smull, M. S. (2001). Essential Lifestyle Planning for Everyone: A Handbook for Facilitators: North West.

• United Nations. (2006). "Convention on the Rights of Persons with Disabilities (CRPD)." Retrieved 10/1/2018, 2018, from https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html.

• United Nations Office of the High Commissioner on Human Rights (2009). Thematic Study by the Office of the United Nations High Commissioner for Human Rights on enhancing awareness and understanding of the Convention on the Rights of Persons with Disabilities. New York, United Nations General Assembly.