IMPLEMENTING THE PRINCIPLE OF AUTONOMY IN DEMENTIA CARE To help anticipate To help live with dementia IMPLEMENTING THE PRINCIPLE OF AUTONOMY IN DEMENTIA CARE TRADUIRE LE PRINCIPE D’AUTONOMIE DANS LE SOIN AUX PERSONNES ATTEINTES DE DEMENCE Fabrice GZIL, PhD Manager, Social Studies Department FONDATION MEDERIC ALZHEIMER – Paris (France) 26th Conference of Alzheimer’s Disease International – 28th March 2011 - Toronto (Canada)

Conflict of Interest Disclosure Fabrice Gzil, PhD Has no real or apparent conflicts of interest to report.

CAPACITY FOR AUTONOMY AND DEMENTIA Implementing the Principle of Autonomy in Dementia Care ADI Conference, Toronto, 28th March 2011 3 3

CAPACITY FOR AUTONOMY AND DEMENTIA CLINICIANS Competence assessment field Can people with dementia consent to medical treatment or research? Implementing the Principle of Autonomy in Dementia Care ADI Conference, Toronto, 28th March 2011 3 4

CAPACITY FOR AUTONOMY AND DEMENTIA CLINICIANS PHILOSOPHERS Competence assessment field Can people with dementia consent to medical treatment or research? Moral philosophy How is that capacity affected by dementia? Implementing the Principle of Autonomy in Dementia Care ADI Conference, Toronto, 28th March 2011 3 5

CAPACITY FOR AUTONOMY AND DEMENTIA CLINICIANS PHILOSOPHERS Competence assessment field Can people with dementia consent to medical treatment or research? Moral philosophy How is that capacity affected by dementia?  Confronting the views of clinicians and philosophers Implementing the Principle of Autonomy in Dementia Care ADI Conference, Toronto, 28th March 2011 3 6

What is capacity for autonomy for CLINICIANS ? Implementing the Principle of Autonomy in Dementia Care ADI Conference, Toronto, 28th March 2011 4 7

What is capacity for autonomy for CLINICIANS ? Paul APPELBAUM Assessing decision-making capacity APPELBAUM & GRISSO. Assessing Competence to Consent to Treatment. Oxford University Press, 1998 Implementing the Principle of Autonomy in Dementia Care ADI Conference, Toronto, 28th March 2011 4 8

What is capacity for autonomy for CLINICIANS ? Paul APPELBAUM Assessing decision-making capacity APPELBAUM & GRISSO. Assessing Competence to Consent to Treatment. Oxford University Press, 1998 A conceptual model of consent capacity based on US case law Implementing the Principle of Autonomy in Dementia Care ADI Conference, Toronto, 28th March 2011 4 9

What is capacity for autonomy for CLINICIANS ? Paul APPELBAUM Assessing decision-making capacity APPELBAUM & GRISSO. Assessing Competence to Consent to Treatment. Oxford University Press, 1998 A conceptual model of consent capacity based on US case law Decision-making capacity is related to four abilities  UNDERSTANDING: ability to comprehend information  APPRECIATION: ability to relate this information to one’s own situation  REASONING: ability to evaluate and compare alternatives  EXPRESSING A CHOICE: ability to convey a relatively consistent choice Implementing the Principle of Autonomy in Dementia Care ADI Conference, Toronto, 28th March 2011 4 10

What is capacity for autonomy for CLINICIANS ? Paul APPELBAUM Assessing decision-making capacity APPELBAUM & GRISSO. Assessing Competence to Consent to Treatment. Oxford University Press, 1998 A conceptual model of consent capacity based on US case law Decision-making capacity is related to four abilities  UNDERSTANDING: ability to comprehend information  APPRECIATION: ability to relate this information to one’s own situation  REASONING: ability to evaluate and compare alternatives  EXPRESSING A CHOICE: ability to convey a relatively consistent choice Clinical tools to assess consent capacity  MacCAT-T : MacArthur Competence Assessment Test for Treatment Decisions  MacCAT-CR : MacArthur Competence Assessment Test for Clinical Research Implementing the Principle of Autonomy in Dementia Care ADI Conference, Toronto, 28th March 2011 4 11

What is capacity for autonomy for PHILOSOPHERS ? Ronald DWORKIN The ability to act out of a genuine character DWORKIN. Life’s Dominion: An argument about abortion, euthanasia and individual freedom. Alfred Knopf, 1993 The capacity to shape one’s life according to one’s distinctive personality Implies to have a sense of one’s whole life, "a past joined to a future" Implementing the Principle of Autonomy in Dementia Care ADI Conference, Toronto, 28th March 2011 5 12

What is capacity for autonomy for PHILOSOPHERS ? Ronald DWORKIN The ability to act out of a genuine character DWORKIN. Life’s Dominion: An argument about abortion, euthanasia and individual freedom. Alfred Knopf, 1993 The capacity to shape one’s life according to one’s distinctive personality Implies to have a sense of one’s whole life, "a past joined to a future" Agnieszka JAWORSKA The capacity to value JAWORSKA. Respecting the Margins of Agency: Alzheimer’s patients and the capacity to value. Philosophy and Public Affairs 28(2), 1999 To be a ‘valuer’ is a sufficient condition to have capacity for autonomy Valuing may be quite independent of grasping the narrative of one’s life Implementing the Principle of Autonomy in Dementia Care ADI Conference, Toronto, 28th March 2011 5 13

CAPACITY FOR AUTONOMY AND DEMENTIA CLINICIANS PHILOSOPHERS Implementing the Principle of Autonomy in Dementia Care ADI Conference, Toronto, 28th March 2011 6 14

CAPACITY FOR AUTONOMY AND DEMENTIA CLINICIANS PHILOSOPHERS Capacity to make meaningful decisions Evaluated through specific tools (MacCAT-T, MacCAT-CR…) Capacity to have ‘critical interests’ or values More global capacity Implementing the Principle of Autonomy in Dementia Care ADI Conference, Toronto, 28th March 2011 6 15

CAPACITY FOR AUTONOMY AND DEMENTIA CLINICIANS PHILOSOPHERS Capacity to make meaningful decisions Evaluated through specific tools (MacCAT-T, MacCAT-CR…) Capacity to have ‘critical interests’ or values More global capacity  Articulating the views of clinicians and philosophers Implementing the Principle of Autonomy in Dementia Care ADI Conference, Toronto, 28th March 2011 6 16

A ‘task-specific’ approach of competence APPELBAUM A ‘task-specific’ approach of competence An assessment of independent decision-making capacity Implementing the Principle of Autonomy in Dementia Care ADI Conference, Toronto, 28th March 2011 7 17

APPELBAUM A ‘task-specific’ approach of competence An assessment of independent decision-making capacity JAWORSKA In the context of dementia, capacity for autonomy is best understood as the capacity to originate the appropriate bases for one’s decision that can be partly taken by others Implementing the Principle of Autonomy in Dementia Care ADI Conference, Toronto, 28th March 2011 7 18

APPELBAUM A ‘task-specific’ approach of competence An assessment of independent decision-making capacity JAWORSKA In the context of dementia, capacity for autonomy is best understood as the capacity to originate the appropriate bases for one’s decision that can be partly taken by others DWORKIN When the person has lost the capacity for autonomy, the critical interests which gave meaning and coherence to the person’s life are still important; one should try to respect them Implementing the Principle of Autonomy in Dementia Care ADI Conference, Toronto, 28th March 2011 7 19

… If no coherent sense of self Can the person with dementia make this decision alone? … Uncertainty Is the person able to use information provided (understand, appreciate, reason) to express a choice? If not… Another person will make the decision, but the substitute decision-maker should consider the person’s current values … If no coherent sense of self Substitute decision-maker should consider the person’s precedent values and wishes(e.g. her advanced directives) Implementing the Principle of Autonomy in Dementia Care ADI Conference, Toronto, 28th March 2011 8 20

Thank you Merci for your attention de votre attention Fabrice GZIL gzil@med-alz.org www.fondation-mederic-alzheimer.org