1. Moral and Ethical Dilemmas in End of Life Care and Dementia

2. Ethical Dilemmas Truth Telling Consent Confidentiality Hydration Feeding Justice Euthanasia Symptom Management

3. Ethical Frameworks Principles based Duties based Consequentialist Non-consequentialist Utilitarian

4. Ethics – not universal Time Place Society Culture Religion

5. Principle Based Approach to Bioethics Beneficence Non-malficence Respect for autonomy Justice

6. Beneficence

7. Non-malficence

8. Autonomy Respect for the autonomy of others in so far as such respect is compatible with respect for the autonomy of others Make decisions based on deliberation and values

9. Autonomy Capacity – situation specific Affected by cognitive (and communication) deficits

10. Bodily Autonomy Resistive behaviour to care

11. Justice Fairness

12. Justice Distributitive justice Rights based justice Legal justice

13. Justice Treat equals equally Treat unequals unequally

14. Ethical Aspects of Symptom Management in Dementia Patient report essential Limited evidence base No effective symptom-assessment tools ? Under management

15. Artificial Feeding in Advanced Dementia

16. No evidence of reduction in pressure sores, infection, improved function, comfort, survival Finucane, Christmas, Travis JAMA, 1999: 282(14), 1365-70

17. Percutaneous endoscopic gastrostomy does not prolong survival in patients with dementia Murphy and Lipman Arch Int Med 2003, 163; 1351-3

18. Artificial Hydration What is the purpose Benefits- prolong life - relieve symptoms Burdens  IV access  Subcutaneous inflammation  Hospitalisation  Fluid overload

19. Artificial Hydration A blanket policy is ethically indefensible Towards death a person’s desire for food and drink lessens Evidence suggest Artificial Hydration in imminently dying patients influences neither survival or symptom control

20. An Bord Altranais ‘So long as there is a means of nutrition and hydration it is the duty of the nurse to provide nutrition and hydration’

21. Medical Council of Ireland ‘The Council reiterates its view that access to nutrition and hydration remain one of the basic needs of human beings and all reasonable and practical efforts should be made to maintain both of them’

22. Advance Directive / Care Plan Ethical to respect if current situation reflects envisaged situation May be formally written May be informal – patient’s wishes

23. Advance Directive/ Care Plan The role of family/social network Substituted decision Not ’legal’ but likely to be recognised by courts

24. Confidentiality An ethical obligation May need to be breached if a patient is not able to make decisions about care Views of family about what patient would have wanted

25. Truth Telling What is the ethical obligation?  Consequentialist  Nonconsequentialist ‘Negotiated’ truth telling

26. Moral and Ethical Dilemmas at the End of Life and Dementia Do the right thing The patient’s voice Forward planning Framework for decision making informed by professional code and an ‘ethical guide’