Clinical Ethics

1. Clinical Ethics Prepared by Peter Saul ICU John Hunter Hospital 13th October 2006

2. Medicine is a contact sport…

3. Medicine is a contact sport… People get hurt

9. A little history.. • JHH Clinical Ethics Committee • Founded 1993 • Survey 1995 (J Qual Clin Prac 1998) • CUEHL 1996 • Became Area (HACEC) 2000 • ACHS commendation 2001 • Consultation service published 2004 (MJA 2004;181:204-206)

11. Macro and micro • Macro • Policy • Institutional change • Cultural change • Micro • The pointy end • Support for value-laden decisions at the bedside

12. Time to have a go • The Wandering Man • Elderly man found wandering around a park • Investigations showed brain tumour (inoperable, incurable) • Immigrant, no family or friends in Australia • CEC contacted six weeks after admission • Still wandering, vomiting blood

13. Questions • What can we do without consent? • Hide drugs in his food? • Do an endoscopy? • Restrain him? • Write a no-CPR order?

14. Time to have a go 2 • Young woman with severe Crohn’s disease • Unable to give up smoking • New (expensive) drug available – evidence suggests drug much less effective if patients smoke. • Should the drug be withheld?

15. Ethics consultation • Formal and informal • Knowledge deficit or dilemma (values) • Expertise and accountability

16. “Can you tell me, Socrates - is virtue something that can be taught? Or does it come by practice? Or is it neither teaching nor practice that gives it to a man, but natural aptitude, or something else?” Plato Protagoras and Meno

18. Macro stuff • “Patient autonomy” • A short and undistinguished career • An issue of culture • Can patients become meaningfully involved in decisions about their care? • A worthy subject for experimentation

21. A few facts (AIHW 2002) • Life is still getting longer • But slower • At high cost • All the gain is at the end • Last 5-9yrs with disability • Extremes of age now common • > 90% of Australians now get to be old • Chronic illness now common

23. 80 deaths a month 90% have no attempt at resuscitation 80% have no involvement in their own EOL decisions

24. 80% die after a decision to withdraw or withhold treatment Almost all these decisions are made by surrogates

25. Place of death • US data - 20% in ICU (60% in Miami) • Crit Care Med 2004;32:638-643 • UK data - institutions 80% (hospitals 66.5%) • BMJ 2003;326:30-34 • Bankstown data - > 60% have multiple hospital admissions during last year of life, av bed days 25 • Age & Ageing 2004

26. Death in hospital is an actively managed event…

27. That doesn’t involve the patient

28. Principles of a good death • To know when death is coming, and to understand what can be expected • To be able to retain control of what happens • To be afforded dignity and privacy • To have control over pain relief and other symptoms • To have choice and control over where death occurs (at home or elsewhere) • To have access to information and expertise of whatever kind is necessary • To have access to any spiritual or emotional support required • To have access to hospice care in any location • To have control over who is present and who shares the end • To be able to issue advance directives which ensure wishes are respected • To have time to say goodbye, and control over other aspects of timing • To be able to leave when it is time to go, and not to have life prolonged pointlessly • Age Concern, London 1999

29. Advance care planning in residential care • Questionnaire study of 4625 residents of nursing homes and hostels in NSW • <0.2% had a written advance directive • 1% had a no-CPR order • decision making largely informal Aust NZ J Med 2000;30:339-343

30. “There is always an easy solution to every human problem - neat, plausible, and wrong” H L Mencken 1917

31. Advance directives • Level 1 evidence that you can get people to write them • J Crit Care 2004;19:1-8 • Level 1 evidence they don’t work • Arch Int Med 2004;164:1501-1506

32. End of life decision making in NSW • No legislation (unlike our neighbours) • A complex (and disputed) intersection of guidelines and perceptions about what the common law might say

33. An outline of the RPC Program • Born in LaCrosse Wisconsin in the 90’s • Adopted and adapted by Austin Health in Victoria in 2002 - trialed 02-03 • Extended to acute care pilot hospitals in all states 2004-2006 • Extended to residential aged care 2005 • Rural pilot and GP’s 2006

34. The essence of RPC • Starts at the top • Changes hospital systems • Trains facilitators • Focuses on families/carers, not just patients • Aims to provoke documented discussions (not just AD’s) • Educates absolutely everybody

35. ACP pre RCP Program • Only 1% of in-patient notes included any reference to a plan or patient preferences (4 states) • Legislation not influential • 0.2% of notes in nursing homes in Hunter Region of NSW contained a plan

36. Surrogates pre RCP Program • No recognition of guardianship provisions in acute care (on admission or subsequently). • < 5% of residents in nursing homes in Hunter had a recorded guardian

37. Evaluation • “Program logic map” • Outsourced to a group at LaTrobe • Looked at several tiers, quantitative and qualitative • Tries to establish links between changes made and outcomes

38. Outcomes at JHH • Changes to hospital administration • Changes to processes of care in the pilot wards • 120 trained staff • High level of confidence in trained staff • Incorporated into routines of care • Extended into clinics

39. Early results at JHH • 2 plans and no identified proxies (PR) in 200 patients pre-implementation • 50/200 identified preferred proxy and 30/200 recorded preferences in evaluation period • A smorgasbord of documents produced • Impact evaluated Jan-Apr 2006

40. Outcomes at JHH • (1 in 50 told us to go away) • 15 in-patients/week introduced to RPC (4 wards) and lots of outpatients • 8 ask for follow-up • 3 identify or appoint a proxy • 2 request a no-CPR order • 1 writes a plan (may include an advance care directive). Takes about 2hrs. • All plans followed so far

41. Guidelines for end of life care and decision making • A “shared decision” • Based on “consensus” • Ethical principle • In the absence of a competent adult patient, nobody has the trump card

42. Patient wishes doctors family

43. Patient wishes doctors family No trump card

44. Advance care planning in NSW • Identify who will make decisions for you • If not OK, appoint somebody else • Talk to them • Make sure everybody knows what you’ve said • Write something down and keep it with you