ENGAGING CONSUMERS: THE UNTAPPED DRIVERS OF CHANGE Tom Holman, Dr Natalie Brici
THREE SURVEYS To explore the attitudes towards end of life planning and palliative care from different perspectives Healthy Australia 2012; General consumers (N=710) Consumers attitudes towards end of life planning Victorian Palliative Care Satisfaction Survey (2012); Patients in palliative care (N=692) and bereaved carers (N=936) The experiences patients and bereaved carers have towards palliative care Healthcare Professional Research (May 2012); General Practitioners (N=302) The role GPs play towards initiating dialogue with patients
RESPONDENTS PREFER COMFORT AS AN END OF LIFE CHOICE 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
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
MEDICAL NEEDS ARE IMPORTANT BUT FINANCES WAS THEIR MAIN CONCERN General consumers were asked: Which of the following have you already formally discussed with someone on the premise you did not have long to live? Financial issues (e.g. financial power of attorney) Legal issues (e.g. medical power of attorney, advance care planning) Medical needs (e.g. treatment) 37% 35% 47% Pain relief Where you would prefer to die Spiritual and religious needs 19% 23% 27%
ONLY HALF KNEW HOW TO ENQUIRE ABOUT PALLIATIVE CARE Did you know how to enquire about the palliative care service? Patient 17% 15% 18% 20% 29% Bereaved Carer 14% 10% 18% 18% 40% 1=Strongly disagree 2 3 4 5=Strongly agree
BEREAVED CARERS NEED MORE INFORMATION Top 5 Priorities to Improve State-wide Ranking 1 2 3 4 5 Item Mean Performance (out of 5) Satisfaction with opportunities to talk with other carers about your own situation 3.27 Satisfaction with planning ahead for funeral arrangements 3.74 Satisfaction with ongoing support to minimise financial burden 3.57 Satisfaction with support for legal issues (e.g. advance care planning, medical power of attorney) 3.97 Satisfaction with level of training provided to carry out specific care functions 3.96
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 OVER 50s Importance of End of Life planning 5.00 4.17 4.28 4.00 3.00 2.00 1.00 0.00 Pre-discussion Post-discussion
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 5.00 4.00 3.00 Importance of End of life planning 4.17 4.28 3.42 2.75 2.00 1.00 0.00 Over 50s Pre-discussion Circa 30s Post-discussion
SUMMARY Most consumers do not have a written advance care plan Conversations with GPs are not initiated without triggers Discussing end of life planning increases the perception of it being an important topic
ACTIONS 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
THANK YOU Tom Holman Managing Director UltraFeedback Dr Natalie Brici Research Consultant UltraFeedback m +61(0)412 566 425 t +61(0)3 9819 2086 f +61(0)3 9819 2838 e tom.holman@ultrafeedback.com w www.ultrafeedback.com a 2 Domville Avenue, Hawthorn, Victoria 3122 Australia