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


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Tom Holman, Managing Director, Ultrafeedback delivered this presentation at the 2013 Managing the Deteriorating Patient conference. The management of patients in clinical deterioration has become a chief concern for Australian hospitals, with a patient’s potential for deterioration existing in every hospital ward and health service across the country. This annual event focusses on improving education for staff caring for these patients, and improving the policies and protocols in place to maintain patient safety. For more information, please visit the event website: www.healthcareconferences.com.au/deterioratingpatients

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

  1. 1. End of Life Care from the Perspective of Patient, Carer and Family Focus
  2. 2. 2
  3. 3. Ockham's Razor It is linked with change
  4. 4. 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
  5. 5. 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
  6. 6. 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
  7. 7. Medical needs are important but finances was their main concern ‘Which of the following have you already formally discussed with someone on the premise you did not have long to live?’ 47% Financial issues (e.g. financial power of attorney) Legal issues (e.g. medical power of attorney, advance care planning) 37% Medical needs (e.g. treatment) 35% Pain relief Where you would prefer to die Spiritual and religious needs 27% 23% 19%
  8. 8. Only half knew how to enquire about palliative care Statement: new how to enquire about the palliative care service Patient Bereaved Carer 17% 15% 14% 10% 1=Strongly disagree 18% 18% 2 20% 18% 3 29% 40% 4 5=Strongly agree
  9. 9. Bereaved carers need more information 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
  10. 10. 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%)
  11. 11. 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, • Level of care / Accommodation • Power of attorney & Executors • Resuscitation
  12. 12. 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)
  13. 13. Discussions increase importance rating of end of life planning Importance of End of life planning 5.00 4.17 4.28 4.00 3.42 2.75 3.00 2.00 1.00 0.00 Over 50s Pre-discussion Circa 30s Post-discussion
  14. 14. Process and emotional alignment HCP Efficiency 1 2 3 Opportunity Consumer
  15. 15. Conceptual framework for patient pathway
  16. 16. 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
  17. 17. Some drive to bring people together
  18. 18. Tom Holman 0412 566 425 tom.holman@ultrafeedback.com tom.holman@customerfocus.com.au