The trouble with……adopting outside models!

9/05/2016
The trouble with……adopting
outside models!
Dr Barbara Hayes
Palliative Care Physician; Clinical Leader - Advance Care Planning
&
Stefania Zen
TALS Cultural Liaison Officer
Northern Health
2016
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Acknowledgments
Emiliano Zucchi (TALS Co-ordinator)
and
NH Transcultural & Language Services Team
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Advance Care Planning is…
… a process of planning for
future health care decisions - in advance
 Plan only comes into
effect – if and when a
person is unable to make
decisions for themself
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Background
2004 Introduced ACP
– Respecting Patient Choices Model
 2007 Audit – little ACP activity
 d/w staff
Great idea BUT
- no time
- too complex
- ?? Cultural appropriateness
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Background
Senior Doctor: “…people coming to western countries
from the Middle East would be quite not accepting of the
idea of stopping treatment, their idea is to have
treatment… In the Middle East you would never discuss
with the patient resuscitation or decision-making.”
(Hayes B; J Bioeth Inquiry 2010)
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Qualitative research
Interview ‘in-house interpreters’
 6 participants
 3 Italian language
 3 Arabic/Assyrian/Chaldean/Turkish languages
 Knowledge of Catholic, Orthodox Christian &
Islamic faiths
 Semi-structured, in-depth, one-to-one, recorded
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Northern Health
Top 10 languages-2009
(32089 appointment requests)
1
Turkish
5942
2
Arabic
5849
3
Italian
4900
4
Greek
3763
5
Macedonian
3044
6
Assyrian
2311
7
Vietnamese
1481
8
Cantonese & Mandarin
750
9
Serbian
446
10
Spanish
338
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Qualitative research
Asking
? How would people from the cultural / language group
you identify with be expected to respond to ACP
discussions?
? How do they discuss death and dying?
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Themes
 Sanctity-of-Life v Quality-of-life
 Role of Individual v Family
 Honouring wishes
 Talking about death
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Sanctity-of-life v Quality-of-life
 Quality-of-life is important to many
 Others identify moral/religious duty to accept all
life-prolonging treatment
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Role of Individual v Family
 Individual autonomy valued by many
 The individual defines what is best for themself
 Protecting patient from bad news is good
 The family/community defines what is best for the
person
ie Autononomy vs Beneficence
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Honouring wishes
 Important  Not important
 Family may identify higher moral duties
 especially preserving life
 Oral wishes v written wishes
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Talking about death
 No-one wanted to talk about it!!
 Mentioned often but rarely discussed
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What to say
All approaches to ACP can be variations on:
“Who would make medical decisions for you
if you were too ill to do this for yourself
and
how would they know what you would want?”
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Advance Care Planning in 3-steps
A
C
P
• Appoint an Agent
• Chat & Communicate
• Put it on Paper
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Advance Care Planning is…
… a process of planning for future health care,
where a person’s values, beliefs and preferences are
made known,
so they can guide clinical decision making,
at a future time when that person cannot make or
communicate their decisions due to lack of capacity.
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
ACP informs the ‘in-the-moment’ future decisions
required at a time of deterioration

Rather than making medical treatment decisions now,
for a future hypothetical deterioration
(Sudore & Fried. Annals of Internal Medicine. 2010)
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Why do we like it?
 Sensitive to cultural diversity
AND - sensitive to diversity of moral reasoning
 Easier to introduce to patients – all patients
 Encourages informal and ongoing conversation
 Only write down strongly held wishes
 Easy to implement / understand / teach
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A
C
P
• Appoint an Agent
• Chat & Communicate
• Put it on Paper
Dr Barbara Hayes
Clinical Leader – Advance Care Planning
Northern Health
Email: Barbara.Hayes@nh.org.au
Northern Health Advance Care Planning Program
http://www.nh.org.au/services/advance-care-planning
Vic Department of Health and Human Services
http://www.health.vic.gov.au/acp
Office of the Public Advocate
http://www.publicadvocate.vic.gov.a
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References
 Hayes, B. (2010). "Trust and distrust in CPR decisions."
Journal of Bioethical Inquiry. 7(1): 111-122.
 Sudore R & Fried T. (2010). “Redefining the ‘Planning’ in
Advance Care Planning: Preparing for end-of-life decision
making.” Annals of Internal Medicine. 153(4): 256-252
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