Advance care planning
Do we really know what our
patients want & do we respect it?
Dr Karen Detering
Respecting Patient Ch...
Mr K, aged 62
• Separated, wife lives nearby, 5 children
• Medical history
• Severe COPD
• Ischaemic cardiomyopathy
• Unde...
Mr K continued....
• 2010 - 3 admissions - exacerbations COPD
• Early 2011 – 2 admissions – exacerbations COPD
• September...
Impact of advance care planning for Mr K
• Family very happy with care received
• Staff felt comfortable
• Clear plan of m...
Mr G, 81 YO
• lives with wife, 3 children
• Pulmonary fibrosis – diagnosed in July 2011
• treated - steroids & oxygen. Poo...
Mr G Continued …..
• He discussed his wishes with his GP, and
documented his wishes.
• Wife as his substitute decision mak...
Background – medical decision-making
• Competent patients can refuse unwanted medical
interventions, even if death is the ...
Decision-making in non competent patients
• Substitute decision maker
• Decision making guided by
• Previously completed A...
What Is Advance Care Planning?
• Advance care planning:
• Assists patients to reflect on their values and
beliefs in relat...
Why is ACP important?
• Most people die after chronic illness
• 80% of deaths occur under medical care & ~
50% not compete...
Coordinated ACP:
• Trained non medical staff facilitate ACP
• Work closely with patient’s health care team
• Assist patien...
Building the evidence
Randomised controlled trial of ACP
• English speaking, competent patients ≥ 80YO
• Main diagnosis - Cardiac / Respiratory
...
What happened to decisions after ACP?
Yes Y- DOO No Delegate Don’t know
Pre ACP (%) 27 23 38 0 12
Post ACP (%) 3 31 47 18 ...
Wishes regarding CPR?
Yes Y- DOO No Delegate Don’t know
Pre ACP (%) 27 23 38 0 12
Post ACP (%) 3 31 47 18 1
Cardiopulmonar...
Wishes regarding life-prolonging treatment?
Yes Y- DOO No Delegate Don’t know
Pre ACP (%) 27 23 38 0 12
Post ACP (%) 3 31 ...
Other results:
• ACP patients more likely to be satisfied regarding
• overall hospitalisation & information provided
• bei...
Other results:
• Control patients- negative comments
• the doctors don’t listen
• I felt ignored and in the way
• They don...
Deceased patients
• Primary outcome measure:
• Patient’s wishes known and respected
• Intervention 86%
• Control 30% p < 0...
Impact of death on surviving relatives
• Death of a relative can cause significant anxiety,
depression and post-traumatic ...
Deceased patients (56 patients)
Intervention Control P value
Number of people with IES > 30 0 4 0.03
Number of people with...
Deceased patients (56 patients)
Intervention Control P value
Number of people with IES > 30 0 4 0.03
Number of people with...
Deceased patients (56 patients)
Intervention Control P value
Number of people with IES > 30 0 4 0.03
Number of people with...
Deceased patients (56 patients)
Intervention Control P value
Number of people with IES > 30 0 4 0.03
Number of people with...
Survey of surviving family members
“He had a very peaceful death, just as it should have
been, & I would like to thank all...
Benefits of ACP
• ACP improves end of life care and patient
satisfaction with care
• ACP assists family to:
1. know patien...
Illness trajectories
Illness trajectories
Erratic e.g. organ failure – COPD
Illness trajectories
Erratic e.g. organ failure – COPD
ACP in patient with chronic / life limiting illness
• Hope for the best/ plan for the worst
• Determine patient’s treatmen...
ACP - the present and the future
• ACP – should be part of routine health care
• Acute, sub acute, GP, community, aged car...
www.respectingpatientchoices.org.au
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Dr Karen Detering, Austin Health - Advanced care planning - Do we really know what our patients want and do we respect it?

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Dr Karen Detering, Austin Health delivered the presentation at the 2013 Hospital in the Home Conference.

The Hospital in the Home Conference is a nurse oriented program packed with comprehensive case studies to improve HITH services and maximise hospital efficiency throughout Australia.

For more information about the event, please visit: http://www.communitycareconferences.com.au/HITHevent

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Dr Karen Detering, Austin Health - Advanced care planning - Do we really know what our patients want and do we respect it?

  1. 1. Advance care planning Do we really know what our patients want & do we respect it? Dr Karen Detering Respecting Patient Choices Program Austin Health karen.detering@austin.org.au
  2. 2. Mr K, aged 62 • Separated, wife lives nearby, 5 children • Medical history • Severe COPD • Ischaemic cardiomyopathy • Undertook advance care planning Dec 09 • Son appointed as substitute decision-maker • Completed ACP electing to have “trial” of life-sustaining treatment
  3. 3. Mr K continued.... • 2010 - 3 admissions - exacerbations COPD • Early 2011 – 2 admissions – exacerbations COPD • September 2011 • Presented with exacerbation of COPD • Managed on ward, deteriorated • Intubated, ICU for 3 days • no reversible factors identified • patient extubated • 1/7 later, died on ward with sons, and wife present
  4. 4. Impact of advance care planning for Mr K • Family very happy with care received • Staff felt comfortable • Clear plan of management • No conflict • Reduced staff time required to manage patient and family • Staff happy with outcome as they knew patient wishes followed
  5. 5. Mr G, 81 YO • lives with wife, 3 children • Pulmonary fibrosis – diagnosed in July 2011 • treated - steroids & oxygen. Poor response to Rx • increasing SOB, and oxygen requirements. • Recurrent infection requiring IV antibiotics • ACP was introduced. July 2011 – he declined • In January 2012 he was approached again: • Not for intubation / Not for ICU • Not wishing further hospitalisation
  6. 6. Mr G Continued ….. • He discussed his wishes with his GP, and documented his wishes. • Wife as his substitute decision maker • Subsequently became unwell - infection & SOB • GP called, not ambulance (as he would have previously done) • Died at home with family present
  7. 7. Background – medical decision-making • Competent patients can refuse unwanted medical interventions, even if death is the likely outcome • This is well established ethically and legally in the practice of modern medicine • Ethical principles: • Autonomy & Informed consent • Beneficence vs. non maleficence • Dignity & Respect
  8. 8. Decision-making in non competent patients • Substitute decision maker • Decision making guided by • Previously completed Advance Care Plan • “Substituted judgement” –aim to reach the decision patient would reach if competent • Consideration of the patient’s “best interests”
  9. 9. What Is Advance Care Planning? • Advance care planning: • Assists patients to reflect on their values and beliefs in relation to their goals of medical care • Encourages patients to • Appoint a substitute decision maker & discuss their wishes with this person • Document their future treatment wishes • Only comes into effect if the person becomes unable to make their own decisions
  10. 10. Why is ACP important? • Most people die after chronic illness • 80% of deaths occur under medical care & ~ 50% not competent when near death • Family & friends – significant chance of not knowing our views without discussion • A doctor who is uncertain will, with good intention, treat aggressively  People being kept alive under circumstances that are not dignified, and in way they would not have wanted
  11. 11. Coordinated ACP: • Trained non medical staff facilitate ACP • Work closely with patient’s health care team • Assist patients / relatives to reflect on patient’s goals, values and beliefs • Encourage appointment of SDM and documentation of wishes • Uses current legislation • Makes sure documents are clear and available
  12. 12. Building the evidence
  13. 13. Randomised controlled trial of ACP • English speaking, competent patients ≥ 80YO • Main diagnosis - Cardiac / Respiratory • Intervention – coordinated ACP • 81% patients completed ACP • 86% expressed wish re end-of-life care • 82% wish re CPR, 75% wish re LPT • Family involved – 74%, ↑ likelihood of completing ACP • Average time taken - 64 minutes
  14. 14. What happened to decisions after ACP? Yes Y- DOO No Delegate Don’t know Pre ACP (%) 27 23 38 0 12 Post ACP (%) 3 31 47 18 1 Cardiopulmonary Resuscitation Yes Y- DOO No Delegate Don’t know Pre ACP (%) 67 9 22 0 2 Post ACP (%) 2 37 33 24 4 Life-prolonging Treatment
  15. 15. Wishes regarding CPR? Yes Y- DOO No Delegate Don’t know Pre ACP (%) 27 23 38 0 12 Post ACP (%) 3 31 47 18 1 Cardiopulmonary Resuscitation Yes Y- DOO No Delegate Don’t know Pre ACP (%) 67 9 22 0 2 Post ACP (%) 2 37 33 24 4 Life-prolonging Treatment
  16. 16. Wishes regarding life-prolonging treatment? Yes Y- DOO No Delegate Don’t know Pre ACP (%) 27 23 38 0 12 Post ACP (%) 3 31 47 18 1 • move to less aggressive treatment • delegation of decision making Cardiopulmonary Resuscitation Yes Y- DOO No Delegate Don’t know Pre ACP (%) 67 9 22 0 2 Post ACP (%) 2 37 33 24 4 Life-prolonging Treatment
  17. 17. Other results: • ACP patients more likely to be satisfied regarding • overall hospitalisation & information provided • being listed to • level of involvement in decision making • their own / their family
  18. 18. Other results: • Control patients- negative comments • the doctors don’t listen • I felt ignored and in the way • They don’t want me as I am too old • They wouldn’t speak to me, and kept discussing things with my family
  19. 19. Deceased patients • Primary outcome measure: • Patient’s wishes known and respected • Intervention 86% • Control 30% p < 0.001 • No difference in mortality between groups • Location of death • ICU: 0 intervention pt, 4 control pt (p = 0.03)
  20. 20. Impact of death on surviving relatives • Death of a relative can cause significant anxiety, depression and post-traumatic stress • How do you quantify the impact? • IES: Impact of Event Score • HADS: Hospital Anxiety & Depression Score
  21. 21. Deceased patients (56 patients) Intervention Control P value Number of people with IES > 30 0 4 0.03 Number of people with HADS – depression > 8 0 8 0.002 Number of people with HADS – anxiety > 8 0 5 0.02 FM’s satisfaction with the quality of death Very satisfied: n, % Satisfied: n, % Not satisfied, n. % 24, 82.8% 2, 6.9% 3, 10.3% 13, 48.1% 8, 29.6% 6, 22.2% 0.02 FM’s perception of patient’s satisfaction with the quality of death Very satisfied: n, % Satisfied: n, % Not satisfied, n. % 25, 86.2% 1, 3.4% 3, 10.3% 10, 37.0% 10, 37.0% 7, 25.9% <0.001
  22. 22. Deceased patients (56 patients) Intervention Control P value Number of people with IES > 30 0 4 0.03 Number of people with HADS – depression > 8 0 8 0.002 Number of people with HADS – anxiety > 8 0 5 0.02 FM’s satisfaction with the quality of death Very satisfied: n, % Satisfied: n, % Not satisfied, n. % 24, 82.8% 2, 6.9% 3, 10.3% 13, 48.1% 8, 29.6% 6, 22.2% 0.02 FM’s perception of patient’s satisfaction with the quality of death Very satisfied: n, % Satisfied: n, % Not satisfied, n. % 25, 86.2% 1, 3.4% 3, 10.3% 10, 37.0% 10, 37.0% 7, 25.9% <0.001
  23. 23. Deceased patients (56 patients) Intervention Control P value Number of people with IES > 30 0 4 0.03 Number of people with HADS – depression > 8 0 8 0.002 Number of people with HADS – anxiety > 8 0 5 0.02 FM’s satisfaction with the quality of death Very satisfied: n, % Satisfied: n, % Not satisfied, n. % 24, 82.8% 2, 6.9% 3, 10.3% 13, 48.1% 8, 29.6% 6, 22.2% 0.02 FM’s perception of patient’s satisfaction with the quality of death Very satisfied: n, % Satisfied: n, % Not satisfied, n. % 25, 86.2% 1, 3.4% 3, 10.3% 10, 37.0% 10, 37.0% 7, 25.9% <0.001
  24. 24. Deceased patients (56 patients) Intervention Control P value Number of people with IES > 30 0 4 0.03 Number of people with HADS – depression > 8 0 8 0.002 Number of people with HADS – anxiety > 8 0 5 0.02 FM’s satisfaction with the quality of death Very satisfied: n, % Satisfied: n, % Not satisfied, n. % 24, 82.8% 2, 6.9% 3, 10.3% 13, 48.1% 8, 29.6% 6, 22.2% 0.02 FM’s perception of patient’s satisfaction with the quality of death Very satisfied: n, % Satisfied: n, % Not satisfied, n. % 25, 86.2% 1, 3.4% 3, 10.3% 10, 37.0% 10, 37.0% 7, 25.9% <0.001
  25. 25. Survey of surviving family members “He had a very peaceful death, just as it should have been, & I would like to thank all staff for this.” “Even though we already knew what he wanted it was great to be able to talk about it so openly.” _____________________________________________ “Mum didn’t want heroics. I was horrified to hear she received 45 minutes of CPR. She didn’t want it. All anyone had to do was ask.” “The doctors kept asking if dad should be resuscitated. I didn’t think they should keep asking, as they also told us it wouldn’t help him. It was obvious to us he was dying.”
  26. 26. Benefits of ACP • ACP improves end of life care and patient satisfaction with care • ACP assists family to: 1. know patient wishes, be involved in ACP discussions • More able to make decisions • Less burdened 2. Have less risk of stress, anxiety and depression 3. Be more satisfied with quality of patient’s death
  27. 27. Illness trajectories
  28. 28. Illness trajectories Erratic e.g. organ failure – COPD
  29. 29. Illness trajectories Erratic e.g. organ failure – COPD
  30. 30. ACP in patient with chronic / life limiting illness • Hope for the best/ plan for the worst • Determine patient’s treatment preferences during an acute exacerbation/ deterioration • Consider a “trial of treatment” if appropriate • Reassure that discussing ACP • Will not diminish focus on maximizing outcomes (incl. survival if this is a goal) • limiting LPT does not equate to limiting care • discuss a commitment to non abandonment
  31. 31. ACP - the present and the future • ACP – should be part of routine health care • Acute, sub acute, GP, community, aged care, well elderly • Incorporated into hospital standards, government policy • All health care staff need to be aware of concepts, know what to do if patient has ACP, how to respond to requests for ACP
  32. 32. www.respectingpatientchoices.org.au
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