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End of Life Care from the Perspective of Patient, Carer and Family Focus
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Page 1: End of Life Care from the Perspective of Patient, Carer and Family

End of Life Care from the Perspective of Patient, Carer and Family

Focus

Page 2: End of Life Care from the Perspective of Patient, Carer and Family

2

Page 3: End of Life Care from the Perspective of Patient, Carer and Family
Page 4: End of Life Care from the Perspective of Patient, Carer and Family

Ockham's Razor

It is linked with change

Page 5: 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

Page 6: End of Life Care from the Perspective of Patient, Carer and Family

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

Page 7: End of Life Care from the Perspective of Patient, Carer and Family

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

Page 8: End of Life Care from the Perspective of Patient, Carer and Family

‘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

Page 9: End of Life Care from the Perspective of Patient, Carer and Family

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

Page 10: End of Life Care from the Perspective of Patient, Carer and Family

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

Page 11: End of Life Care from the Perspective of Patient, Carer and Family

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%)

Page 12: End of Life Care from the Perspective of Patient, Carer and Family

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

Page 13: End of Life Care from the Perspective of Patient, Carer and Family

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)

Page 14: End of Life Care from the Perspective of Patient, Carer and Family

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

Page 15: End of Life Care from the Perspective of Patient, Carer and Family

Consumer

1

2

3

HCP Efficiency

Opportunity

Process and emotional alignment

Page 16: End of Life Care from the Perspective of Patient, Carer and Family

Conceptual framework for patient pathway

Page 17: End of Life Care from the Perspective of Patient, Carer and Family

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

Page 18: End of Life Care from the Perspective of Patient, Carer and Family

Some drive to bring people together