Hearing the voices of the vulnerable

in planning for care at the end of life

ACD Conference May 2016

A/Prof Bernadette Richards

A/Prof Gregory Crawford

Project Team

> Teresa Burgess

> Alwin Chong

> Gregory Crawford

> Terry Dunbar

> Jaklin Eliot

> Debbie Faulkner

> Katherine Hodgetts

> Ian Olver

> Bernadette Richards

> Tanya Zivkovic

Advance Care Directives in South Australia: A brief introduction

A/Prof Bernadette Richards

Objects and principles of the Act

• To protect health practitioners and others giving effect to the directions wishes and values of a person who has given an ACD

• Enable competent adults to give directions about their future health care, residential and accommodation arrangements and personal affairs

• Express wishes and values in respect to above

• Allow future decisions to be made by another person on their behalf

• Ensure as far as practicable and appropriate that health care accords with the expressed directions, wishes and values

• To ensure that the wishes and values are considered in dealing with the person's residential and accommodation arrangements and personal affairs

• Provide mechanisms for disputes

• (s9)

University of Adelaide 4

Further foundational principles

• Provision of healthcare includes withdrawal or withholding of health care (s5)

• Health practitioner cannot be compelled to provide particular health care (s6)

Whilst a person can indicate his or her wishes in respect of the health care he or she wishes to receive, ultimately the question of what form of health care should be provided to a patient is a matter for the health practitioner to decide (however, a person is entitled to refuse health care of any kind, or to require it to be stopped, including health care that saves or prolongs his or her life).

University of Adelaide 5

Impaired decision-making

s7 defines impaired decision making:

Not capable of understanding or retaining or using information or communicating decision

Important:

• Not incapable of understanding merely because not able to understand technical or trivial information

• Not able to retain merely because can only retain for a short time

• May fluctuate between being impaired and not

• Not impaired merely because a decision made results, or may result, in an adverse outcome

University of Adelaide 6

Binding and non-binding provisions

s19 Binding and non-binding provisions

Refusal of particular health care will be a binding provision

University of Adelaide 7

Substitute Decision-Maker (SDM)

Who can be appointed?

s21: Can appointment one or more persons as SDMs

SDMs cannot be:

• Not competent

• Health practitioner responsible in part or with others for the health care

• Paid carer of the person

• Any other person described in the regulations

University of Adelaide 8

Substitute Decision-Maker (SDM)

What if there is more than one SDM? Do they both have to make the decision?

• s22 Jointly and severally empowered

s23 Powers of SDMs:

• Health care

• Residential and accommodation arrangements

• Personal affairs

NOTE:

• Even if it is written in the ACD the SDM cannot refuse the administration of drugs to relieve pain or distress; the natural provision of food and liquids by mouth

University of Adelaide 9

Undue Influence (s56)

Re T : '...so long as it did not overbear the independence of the patient's decision.'

Lord Donaldson formulated the following question:

'Does the patient really mean what he says or is he merely saying it for a quiet life, to satisfy someone else or because the advice and persuasion to which he has been subjected is such that he can no longer thinking and decide for himself? In other words, is it a decision expressed in form only, not in reality?'

University of Adelaide 10

Hearing the voices of the vulnerable in

planning for care at the end of life

A/Prof Gregory Crawford

Senior Consultant Palliative Medicine

Northern Adelaide Local Health Network

Discipline of Medicine, University of Adelaide

Advance Care Planning (ACP)

> significant differences in the

understanding and conceptualisation

> most practitioners agree on the aims of

ACP

> significantly different ideas around the

process of implementation, particularly in

documentation

> some view ACP as a process

OR

> an ongoing discussion, incorporating both

wishes and values. (Rhee, Zwar, & Kemp, 2011)

Assumptions

> often unspoken

> concerns regarding conversations, care,

and decision-making at the end-of-life

> assumes a particular model of autonomy

• i.e. a rational autonomous adult/patient

independently obtaining and deliberating over

information to arrive at a decision. (Eliott & Olver, 2007)

> However, these assumptions are rooted in

an Anglo-Australian conception of self

> may not reflect decision-making in non-

Anglo-Australian communities within

Australia.

Assumptions

> This is particularly relevant for vulnerable

populations such as Aboriginal and Torres

Strait Islanders, and people from

Culturally and Linguistically Diverse

(CALD) backgrounds

> communal or family-based decision-

making processes, or specific relational

responsibilities may render policies

premised on individual autonomy

culturally inappropriate, even insensitive.

Cultural considerations

> specific cultural taboos can prohibit

discussions about death and dying

> need to be sensitively negotiated

between patients, families, and health-

care professionals particularly with

Indigenous and CALD communities.

> There is little guidance on how best to

support end-of-life care planning for

Indigenous and CALD individuals,

families, and communities. (Federation of Ethnic Communities Council of Australia, 2015;

McGrath, 2006)

Cultural considerations

> a marked dissonance between policy and

practice in end-of-life care conversations

for people living and dying with chronic

disease, regardless of cultural

background.

> Faced with a life-limiting illness, many

patients and families appear to enact

‘relational autonomy’

• i.e. decisions and deciders are located in a

network of relationships

• affects how and what decisions are made. (Eliott & Olver, 2007)

Current pilot study

> Funded by Northern Communities Health

Foundation

> To undertake separate scoping

community forums with representatives of

each of the nominated vulnerable groups

• Research team

Teresa Burgess, Alwin Chong, Gregory

Crawford, Terry Dunbar, Jaklin Eliott, Debbie

Faulkner, Katherine Hodgetts, Ian Olver,

Bernadette Richards, Tanya Zivkovic.

i.e. public health, Indigenous, palliative care,

social science, bioethics and law

Aims

> bring together experienced community

workers providing care for marginalised and

vulnerable populations

• advanced chronic disease

• Aboriginal and Torres Strait Islanders

• people from CALD backgrounds

• in the Northern suburbs of Adelaide, South

Australia.

> to identify and name issues and challenges

• to bridge the gap between policy and practice

• in initiating advance care planning processes

• in developing advance care plans in accordance

with national policy.

Aims

> To identify and articulate dissonance

between policy and practice in end-of-life

care conversations, ACP, and the

development of advance care plans and

directives in specific vulnerable

populations.

> To contribute to the development of a

larger scale research project, which will

draw together diverse stakeholders

including experts from community,

government, academia, and community

members themselves

Aims

> to provide detailed input into the five-year

review of the SA Advance Care Directives

Act which is required following

implementation in 2013

• encompassing legal, ethical, palliative care,

cultural anthropology, Indigenous health, and

epidemiological expertise

> will contribute to this review to ensure that

future policy and practice developments

can meet the needs of all South

Australians, including the most vulnerable

groups in society.

Consultations

> Aboriginal Health Workers, Elders Village

> Northern Health Network

• supports primary healthcare by providing

support to general practitioners and allied health

professionals

> Salisbury District Council

> The Multicultural Communities Council SA

> GP focus group

Aboriginal Elders Village

> The importance of speaking with the right

person.

• current policy does not account well for the

kinship/familial relationships that exist

within/between HCP and patients/families

> available documents/policy is not helpful

> Can be a way of reclaiming control over own

life, in a cultural context.

> one-size-fits all will not work

• variability in contexts, relationships, cultural beliefs

and practices.

> Community wants to be included in

developing relevant policy and process

Aboriginal Elders Village

> There are practical obstacles in

consulting with relevant decision-makers

• finding them, and thus processes will need to

• Flexible processes needed

> Each location caring for Indigenous

elders should be able to facilitate

important ceremonial/culturally relevant

practices

> Written documents may not be preferred,

and indeed, in some contexts, associated

with very negative perceptions of 'white'

policies.

CALD consultation

> met with Multicultural Communities

Council who will facilitate meetings with

the Italian and Vietnamese communities

> Bhutanese (Nepalese) community to be

contacted directly

GP focus group

> there is a lot of confusion about ACDs

> a general feeling that no-one wants to talk

about it

> certainly not interested until patients are

unwell

> also thought many CALD groups would

refuse to talk about it

> is a complex process and can require

multiple conversations

GP focus group

> that incentives for patients to complete

ACDs might work

> Incentives would definitely help GPs to do

more

> Need for training about how to have the

conversation needed

> CPD points might be a good idea

> Takes time

Next steps

> Including vulnerable populations in the

development and implementation of

policies and strategies in complex and

sensitive public policy areas

• will investigate how vulnerable populations

can be meaningfully included in the

development of policies and strategies in

complex and sensitive public policy areas

• will use the recent implementation of the

Advance Care Directives Act 2013 (SA) as a

case study.

Next steps

> A systematic review of literature around

inclusive community engagement,

particularly with potentially vulnerable or

marginalised communities, as a means of

informing policy development

> A case study of inclusive engagement on

the topic of Advance Care Planning in

South Australia.

> This case study investigation will

comprise three separate but related

studies, including:

Legislative review

> A legislative review, investigating the

current legislative framework governing

Advance Care Planning in South

Australia, the Advance Care Directives

Act, 2013.

Review of current practice

> A review of current practice, investigating

how Advance Care Planning is currently

undertaken and how advance care

directives are being completed and used

in acute care.

• a case note audit and review of ACP and ACD

prevalence in two major Adelaide hospitals,

following a methodology developed by

Gardiner et al., (2011) in the U.K. and NZ.

Community & health professional

understandings of ACD

> Investigation into community and health

professional understandings of advance

care planning with a focus on potentially

vulnerable communities.

> Inclusive engagement processes will be

undertaken with a range of vulnerable

groups with a view to informing policy

development around ACP

Groups

> ATSI

• participatory action research framework

• design, analysis and evaluation of “culturally

appropriate ACP”

> CALD

• Bhutanese, Vietnamese and Italian

> Chronic disease

• Cancer

• Dementia

• COPD

> Health Service Providers

• in acute and community care

• around ACP and implementation of ACDs

And then

> an identification of the similarities and

differences in these understandings

between service providers and vulnerable

communities

> An overarching ethical analysis

examining the results of the three

proposed studies.

“Well, when it’s

my turn, I just

hope I go quietly.

… You know –

without a lot of

running around.”

References

> Eliott, J.A., & Olver, I.N. (2007). Autonomy and the family as

(in)appropriate surrogates for the do-not-resuscitate (DNR)

decision: a qualitative analysis of dying cancer patients’ talk.

Journal of Clinical Ethics 18(3), 206-218.

> Federation of Ethnic Communities’ Councils of Australia (2015)

Review of Australian research on older people from Culturally

and Linguistically Diverse backgrounds. Commonwealth of

Australia.

> Gardner, C., Cobb, M., Gott, M., Ingleton, C. (2011) Barriers to

providing palliative care for older people in acute hospitals.

Age & Ageing, 40(2), 233-238.

> McGrath, P., Holewa, M. (2006). Seven principles for

indigenous palliative care service delivery: research findings

from Australia. Austral-Asian Journal of Cancer, 5(3), 179-186.

> Rhee, J., Zwar, N., & Kemp L. (2011). How is advance care

planning conceptualised in Australia? Findings from key

informant interviews. Australian Health Review, 35,197-203.