Theresa Hegarty: using patient, carer and staff stories to improve patient experience
End of Life Care from the Perspective of Patient, Carer and Family
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Transcript of End of Life Care from the Perspective of Patient, Carer and Family
3 surveys
Exploring the attitudes towards end of life planning
and palliative care from different perspectives
Healthy Australia 2009-13; General consumers
Consumers’ attitudes towards end of life planning
Victorian Palliative Care Satisfaction Survey (2013)
The experiences patients and bereaved carers have towards palliative care
Healthcare Professional Research (May 2012)
The role GPs play towards initiating dialogue with patients
87% prefer to live their final days in comfort
44% disagreed with the statement ‘medical
intervention should be used to prevent death
whenever possible’
77% stated if they had an incurable disease and were
likely to die soon, they would prefer to be at home
rather than in a hospital
Respondents prefer comfort as an end of
life choice
Most consumers do not have an advance
care plan
90% of consumers do not have a written Advance Care
Plan
52% of consumers do not have a written advance care
plan but feel their wishes are known
31% of consumers do not have a written advance care
plan and think their wishes are not known
‘Which of the following have you already formally discussed with someone
on the premise you did not have long to live?’
19%
23%
27%
35%
37%
47%
Spiritual and religious needs
Where you would prefer to die
Pain relief
Medical needs (e.g. treatment)
Legal issues (e.g. medical power of attorney,advance care planning)
Financial issues (e.g. financial power of attorney)
Medical needs are important but finances
was their main concern
Statement: new how to enquire about the palliative care service
Only half knew how to enquire about
palliative care
14%
17%
10%
15%
18%
18%
18%
20%
40%
29%
BereavedCarer
Patient
1=Strongly disagree 2 3 4 5=Strongly agree
Top 5 Priorities to Improve VIC State-wide
Ranking Item Mean
Performance
(out of 5)
1 Satisfaction with opportunities to talk with other
carers about your own situation 3.27
2 Satisfaction with planning ahead for funeral
arrangements 3.74
3 Satisfaction with ongoing support to minimise
financial burden 3.57
4
Satisfaction with support for legal issues (e.g.
advance care planning, medical power of
attorney) 3.97
5 Satisfaction with level of training provided to carry
out specific care functions 3.96
Bereaved carers need more information
Diagnosis of terminal illness is the trigger for
end of life conversations
GP conversations are initiated when
• It is clear significant extra care is needed (48%)
• Not long after terminal diagnosis (35%)
• At the point of diagnosis with a terminal illness (16%)
Discussion with over 50s
More likely to consider the following aspects of
end of life planning in comparison to
respondents circa 30 years old;
• Funeral
arrangements,
• Power of attorney &
Executors
• Level of care /
Accommodation
• Resuscitation
Discussion with circa 30s
More likely to consider following aspects of end
of life planning in comparison to respondents
over 50 years old;
• Guardianship,
• Organ donation
• Insurance (e.g. health, life)
Discussions increase importance rating of
end of life planning
0.00
1.00
2.00
3.00
4.00
5.00
Over 50s Circa 30s
Importance of End of life planning
Pre-discussion Post-discussion
4.17 4.28
3.42 2.75
Measure the % of GP patients who have an Advance
Care Plan
Build protocols into healthdirect’s Aged Care Gateway
Introduce ageing and dying into the secondary school
curriculum
Promote individual responsibility and participation in dialogue with ageing parents
Actions
Tom Holman
0412 566 425