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End of Life Decisions

End of Life Decisions. Peter Saul Newcastle, NSW. Be careful, then, and be gentle about death, For it is hard to die, It is difficult to go through the door, Even when it opens. D H Lawrence. “There is always an easy solution to every human problem - neat, plausible, and wrong”

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End of Life Decisions

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  1. End of Life Decisions Peter Saul Newcastle, NSW

  2. Be careful, then, and be gentle about death, For it is hard to die, It is difficult to go through the door, Even when it opens. D H Lawrence

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

  4. This talk • Dying is getting harder • Late, from chronic disease • Technology does prolong life • Decisions must be made for which we are ill-prepared • There are no simple solutions • “Living Wills” • “Euthanasia”

  5. Mrs A

  6. Mrs A age 89yrs • Long term resident in nearby RACF • Cognitively impaired • Wheelchair-bound with spinal arthritis • Recurrent UTI’s – several hospital admissions • Daughter listed as “next of kin” • Advance care directive in notes

  7. At 1 am… • Mrs A became very ill (BP 70) • Mrs A said: • Do nothing • Don’t ring my daughter (she’s on holiday) • Don’t ring the GP • I don’t want to go to hospital again

  8. GP contacted • After hours service • “call an ambulance”

  9. 3 am - in the ED… • BP still low despite fluid and antibiotics • No urine output • Mrs A was clearly disoriented and confused • “I just want to go home” • Still refusing treatment verbally (but allowing us to do everything)

  10. In the ED… • Advance care directive requested from RACF (not sent with patient as it was RACF policy not to) • 2 years old • “Statement of wishes” form. • No-CPR order • Refused “life support” for any illness from which she was not expected to make a “reasonable recovery”. • What do we make of this?

  11. In the ED… • Daughter really was on holiday (and had no mobile). • Niece contacted • “Do everything”

  12. What did we do? • We concluded the the ACD did not constitute a palliative care order. • Mrs A, while refusing treatment was fully cooperative. • We accepted the no-CPR order, but transferred her (against her will) to a private ICU for limited support. • She stayed for a week, and was transferred back to the RACF in good spirits

  13. A good outcome

  14. A good outcome ?

  15. 90% of life gained after 2003 is with profound (core) disability

  16. Change in demography of death

  17. Everything has changed… When we die What we die of Where we die How we die

  18. The Big Movers • Dementia (7th to 3rd) • Diabetes (9th to 6th) • Falls (41st to 20th)

  19. 7000 deaths/year 4000 of them in acute care hospitals

  20. Mostly in ED and ICU

  21. Most are incompetent at the time a decision is made

  22. The “Do Everything Default”

  23. The D.E.D. • Technical imperative • Medical imperative • Defensive practice • Medico-legal mumbo-jumbo • Subspecialisation and the SEP Field • Failure to recognise dying • Unwillingness to go there

  24. Dysthanasia

  25. Change in demography of death Rise of “patient autonomy”

  26. The rise of patient autonomy

  27. “Living Wills” • Uncommon • Legalistic • Vague • Not available • Unsupported by families/carers • Mystifying to doctors • Failed in trials and in legislation

  28. Living Wills • 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

  29. Hastings Center Report 2004

  30. Advance Care Directive

  31. Substitute decision makers

  32. MOLST medical summary Diagnosis and co morbidity Co morbidity is increasingly the biggest predictive indicatory of mortality Identification of advance care planning discussion and document location Summary of prognostic indicators observed over the past 6 months Substitute decision maker identification documented Medical advice re hospital based life sustaining treatment

  33. MOLST medical orders Any section not completed implies full medical treatment for that option Attempt CPR supports discussion re success rate of CPR Accept naturaldying reinforces that dying is anticipated Clear instructions on when to transfer to hospital and use of critical care services Identification of artificial feeding and fluids as medical treatment, promoting further discussion opportunities Goals of antibiotic therapy clarified. Options other then IV administration are identified and opens up discussion opportunities Consent for treatment documented. MO ordering treatment identified

  34. Only work as part of a community-wide system of care. Health literacy the key first step.

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