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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.