1. CAROL TAYLOR, PH.D. Professor, Georgetown School of Nursing and Health Studies Senior Scholar, Kennedy Institute of Ethics ERIN LEVETON, J.D. Adjunct Professor, Georgetown Law School Legislative and Policy Analyst, D.C. State Office of Disability Administration LAURA GUIDRY-GRIMES, M.A. Doctoral Candidate, Georgetown Philosophy Department MARISA BROWN, PH.D. Research Instructor, Georgetown Center for Child and Human Development - University Center for Excellence in Developmental Disabilities 2014 I NTERNATIONAL C ONFERENCE FOR C LINICAL E THICS C ONSULTATION

3. The Project A qualitative research study that will provide evidence of the ethical principles surrogate decision-makers apply when making end of life decisions for individuals with intellectual disabilities. Three major activities:  research study,  the development of an interactive decision- making guide, and  dissemination through a variety of electronic and face-to-face events

4. Aims & Motivations  Research funded by a Georgetown Complex Moral Problems Grant  Exploration of two unique features  complexity in identifying best interest issues  developing an understanding of how these decisions are made

5. Community Support Agency Community Services and Supports Family Formal Advocates Community Support Agency Nurses Program coordinators Psychologist Speech Pathologist Occupational Therapist Physical Therapist Nutritionist Social Worker Formal Advocates Guardian Attorney Government Monitors Protection and Advocacy PERSON Community Services and Supports  Health  Recreation  Employment Supports

7. Developmental Disability  Developmental Disability, as specified in federal Public Law 100-146, means a severe, chronic disability of a person that:  is attributable to a mental or physical impairment or combination of mental and physical impairments;  is manifested before the person attains age twenty-two;  is likely to continue indefinitely;

8. Developmental Disability (cont.)  results in substantial functional limitations in three or more of the following areas of major life activity:  self-care  receptive and expressive language  learning  mobility  self-direction  capacity of independent living  economic self-sufficiency; and

9. Developmental Disability (cont.)  reflects the person’s need for a combination and sequence of special, interdisciplinary, or generic care, treatment, or other services that are of lifelong extended duration and are individually planned and coordinated. [42 U.S.C.6001(5)]

10. Intellectual Disability  Disability characterized by significant limitations in intellectual functioning and in adaptive behavior  Consider limitation within context of community environments  Valid assessments  Limitations coexist with strengths  Use limitations to develop profile of needed supports  Over time, and with appropriate supports, functioning will generally improve American Association on Intellectual and Developmental Disabilities 2010

11. Understanding Capacity  Capacity may change over time based on experience or situation.  A combination of different supports may be required to provide the best assistance.  Lack of opportunity to make decisions can prevent people from developing capacity.  Capacity is not black and white.  Can have capacity to consent to x without having capacity to consent to y ; can have capacity to consent to x without having capacity to refuse x

13. Research Process  Consulted advisory group throughout survey construction, discussion of key data  IRB-approved online survey sent to guardians working in Washington, DC area  22 started survey (16 completed all questions)  Difficulties in recruitment

14. Summary of Key Data  Demographics  Most (62%) attorneys  Almost all (95%) had more than two years of experience as court-appointed guardian  Experiences  68% claim to have a “clear understanding” of ethical/legal issues; 26% expect medical team to make clear recommendation  95% cite “reasoning with others about best interests of charge” as influential in decisions; 63% cite “legal consequences”

15. Summary of Key Data  Experiences (cont’d)  89% report some – moderate level of complexity in making health care decisions for charge  78% report no – some moral distress

16. Summary of Key Data  Responses to scenarios  Top 3 variables that informed all decisions  How patient’s current status compares to baseline  Pt’s functional abilities  Likelihood of recovery or rate of decline  Majority reported being not very – somewhat confident for almost all of the decisions  Small minority would not consider legal consequences for most of the scenarios

17. Significant Learnings  Application of best interest standard  Differing interpretations  Concerns of disability advocates  Less confidence, higher distress in end of life scenarios than in general health care decision-making  Significant reliance on medical team for guidance

19.  Ethics Work-up  Case Studies  Case Analyses  The Guided Interview  Quality of Life Assessment  Annotated Reference Guide  Frequently Asked Questions http://gucchdgeorgetown.net/ucedd/complex

20. PLEASE CONSULT HANDOUT