1. Identifying “Harm” in Palliative Care …when death is the anticipated outcome Dr David MacKintosh, Senior Staff Specialist, Central Coast Palliative Care Service, NSW Australasian Association of Bioethics and Health Law, Sydney, 2013 drdmac1@gmail.com

2. Case… AB - 73 year old woman Chronic airways disease – emphysema Cancer of the kidney Admitted to a hospice at family’s request – acutely unwell (2 days) –capacity lost Family requested no active management Hospice staff agreed AB died peacefully four days later Family grateful for care Hospice staff – job well done  Australasian Association of Bioethics and Health Law, Sydney, 2013 2

3. Has AB been harmed? Australasian Association of Bioethics and Health Law, Sydney, 2013 3

4. Patient Safety? ‘freedom from accidental or preventable injury produced by medical care’ –‘How do I harm thee? Let me count the ways.’ –Drug adverse effects –Chopping off the wrong leg –Untimely death Australasian Association of Bioethics and Health Law, Sydney, 2013 4

5. Patient Safety? Medline 2012 – ‘Patient Safety' –All disciplines - 1694 citations –Palliative Care - 5 citations Australasian Association of Bioethics and Health Law, Sydney, 2013 5

6. Untimely death Curative medicine –You need a very good excuse Palliative care ‘cultural’ perspective –Death normalised –The Death Denying Society Does PC need a good excuse? Are rules of clinical governance different? Australasian Association of Bioethics and Health Law, Sydney, 2013 6

7. For our purposes, ‘harm’ is… A circumstance which causes a person to be in a bad state –Non-comparative (badness is bad in itself) Australasian Association of Bioethics and Health Law, Sydney, 2013 7

8. Harm is always bad, but… Magnitude – degrees of badness Constipation vs Death Mitigation available – still bad, but… ‘all things considered…’ e.g. death as release from unbearble suffering …despite mitigation… Australasian Association of Bioethics and Health Law, Sydney, 2013 8

9. …but, …despite mitigation… Harm still exists: ‘harm as fact’ Has magnitude but is not amenable to mitigation Harm experienced: ‘lived harm’ Has magnitude, is amenable to mitigation Australasian Association of Bioethics and Health Law, Sydney, 2013 9

10. For our purposes dying is: The period of life during which the processes which maintain life begin to fail irreversibly –Hours to days Not applicable where death is anticipated but not imminent –Weeks to months (Pre-dying) He was sick and was going to die anyway Australasian Association of Bioethics and Health Law, Sydney, 2013 10

11. For our purposes death is: Death 1 - Moment of irreversible cessation of life or Death 2 - The continuing state following irreversible cessation of life Australasian Association of Bioethics and Health Law, Sydney, 2013 11

12. Death as harm… Loss of a portion of a life that would otherwise have been lived Epicurus (341 BC to 270 BC) –‘Death is nothing to us’ (Letter to Menoeceus) Death 2 … the state of being dead, NOT loss of life lived Curative medicine - ultimate harm Palliative care - ? Australasian Association of Bioethics and Health Law, Sydney, 2013 12

13. Death as harm… Any circumstance that leads to a reduction in life lived can be considered to be a harm (‘harm as fact’) Mitigation through an all things considered approach (e.g. burden vs benefit) may reduce the magnitude of the harm of death (‘lived harm’) but does not remove it Australasian Association of Bioethics and Health Law, Sydney, 2013 13

14. Was AB harmed? AB - 73 year old woman Chronic airways disease – emphysema Cancer of the kidney Admitted to a hospice at family’s request – acutely unwell (2 days) –capacity lost Family requested no active management Hospice staff agreed AB died peacefully four days later Family grateful for care Hospice staff – job well done  Australasian Association of Bioethics and Health Law, Sydney, 2013 14

15. AB… The rest of the story… Emphysema - No recent admissions to hospital (Predying) Extent of the cancer unknown (Predying) Interesting lifestyle – burdensome for husband / family Respite admission to hospice in week prior to final illness –Subsequent death unexpected, unanticipatable Acutely unwell for only 2 days prior to admission Australasian Association of Bioethics and Health Law, Sydney, 2013 15

16. Right Time? – Right Reason? Would AB have died from one of her diseases? –Probably; eventually Did she die from one of her diseases? –Probably not What did she die from? –We don’t know Possibly urinary sepsis – potentially treatable Australasian Association of Bioethics and Health Law, Sydney, 2013 16

17. Possible harms A circumstance which causes a person to be in a bad state Loss of a portion of life that would otherwise have been lived –Untimely death Australasian Association of Bioethics and Health Law, Sydney, 2013 17

18. Contributing harms A circumstance which causes a person to be in a bad state Deprivation of access to adequate assessment and treatment that may have mitigated that loss –As a result of Subordination of AB’s interests to –Substitute decision makers’ interests – release from burden of care –Obiesance to Palliative Care / Hospice Perspective Australasian Association of Bioethics and Health Law, Sydney, 2013 18

19. Conflicting needs Substitute decision makers interests –What constraints if any can / should be imposed on substitute decision makers? Palliative Care / Hospice perspective –What is its place? Normalisation of death The struggle against Death Denial –Is it any of their business? Australasian Association of Bioethics and Health Law, Sydney, 2013 19

20. Mitigating circumstances None known Suggestions please Australasian Association of Bioethics and Health Law, Sydney, 2013 20

21. Restitution available None Australasian Association of Bioethics and Health Law, Sydney, 2013 21

22. ? For possible harms –Do such harms exist? Should we care about them? Can we do anything about them? Should we do anything about them? Australasian Association of Bioethics and Health Law, Sydney, 2013 22