Decisions in Special Health Care: A Family Member's Perspective

1. Ethical Decision Making and Special Health Care Needs: A Family Member’s Perspective Special Needs Alliance 2018 Fall Meeting Marshall B. Kapp, J.D., M.P.H. Professor Emeritus Florida State University

2. Introduction • My story • Professional preparation and personal application • Decisions may involve chronic care mgt. (e.g., osteoporosis, diabetes), non-emergent acute situations (e.g., breast or prostate cancer), 4-alarm acute crises (e.g., ruptured appendix), transitions in care settings, and EoL/LSMT issues. • Emphasis here on diagnostic and therapeutic interventions

3. Getting Competent Legal Services to Consumers and Their Families • Most consumers and families are clueless about selecting a lawyer. • So, too, are many of the advocacy and support organizations to whom consumers and families turn to for recommendations. • Ethical imperative, not just good marketing, to make your qualifications known

4. Assumption: You have identified the client. • Attorney’s role is notto make ethical decisions about medical care. • Attorney’s role is to answer (substantively and procedurally): • What is required/Duty? • What is permissible/Authority/Power? • What is prohibited/Limits?

5. The Fundamentals • Primacy of consumer autonomy • Evaluating decisional capacity/Shared decision making • Assisted capacity? • Capacity to execute Advance Directives? • Instruction directives (Living Wills) • Proxy directives (Durable Powers of Attorney)

6. Problems with Instruction Directives • Philosophical—Person might change his/her mind later. • Practical • Directive doesn’t physically follow the person. • Directive likely limited to 4-alarm decisions • Directive may not provide much direction. • Caregivers are likely to be strangers. • Hence, better to utilize Proxy directives

7. Surrogate or Proxy Decision Makers • Authority: • Proxy directive • Operation of state default decision making statute • Custom (“next of kin”)/”Bumbling through” • Formal judicial appointment (Guardianship or Conservatorship)

8. When is this necessary? • Plenary or partial? • Permanent or temporary?

9. Cons • Is there a candidate for the job? • Time-consuming process • $$ • Emotionally tumultuous • What protection is really gained?

10. Pros • Definitive authority • Family dynamics • Control over selection? • Willingness of health care providers to cooperate • Speed of responding to medical situation • General quality of care because clear advocate is involved

11. Surrogate Selection • Availability • Willingness • Family dynamics • Ability to make decisions • Ability to make decisions rationally • Capacity to handle misc. financial expenses (e.g., travel, fax and scanning/email capacity, cell phone) • Can surrogate “live without” the patient? • Separate surrogates for personal (health) v. $$ matters?

12. Challenges for Surrogate Decision Making • Surrogate understanding the job’s responsibilities • Legal, ethical, and health care system illiteracy • Ability and willingness to make informed decisions • Family dynamics • Influence of religion and clergy/”Praying on it” • Dependence of public funding for care limiting choices

13. Discontinuity of care • Care often provided by strangers (e.g., hospitalists, NH Medical Director) • Records are not transmitted • Institutions driven by protocols, not patients

14. Applying surrogate decision making standards • Substituted judgment

15. Best interests • What are the goals? Minimize suffering or maximize likelihood of survival? At what point do the goals of care change/transition for the individual? • Danger of overtreatment? Presumption that more is better? Medical interventions are not benign. • Special approval/oversight for EoL decisions? Formal due process for Institutional Ethics Committees? • Research participation: Compulsion to “do something” • Avoiding surrogate conflicts of interest? Are conflicting interests irrelevant?

16. “Unbefriended” individuals • Identifying and empowering a decision maker • Applying decision making standards • Erring on the side of overtreatment

17. Policy Issues • How difficult should guardianship/conservatorship be? Protection/overprotection balance? Does legal process actually make a difference? • When the system becomes too complex and taxing, are families discouraged from participating in the system, resulting in fewer protections for the special needs individual?

18. Starting presumption? • Vulnerability, need for protection, abuse and neglect as the natural state of nature? • Adversarial orientation • Family (or other) is well-intentioned, abuse and neglect are the exception? • Supportive, therapeutic orientation

19. Discussion?