1. Take Charge Florida! End of Life Decisions and You Marshall Kapp, J.D., M.P.H. Center for Innovative Collaboration in Medicine and Law Florida State University marshall.kapp@med.fsu.edu Marshall Kapp, J.D., M.P.H. Center for Innovative Collaboration in Medicine and Law Florida State University marshall.kapp@med.fsu.edu

2. FSU C OLLEGE OF M EDICINE Introduction  Autonomy principle  Informed choice/consent or refusal  Vulnerability in critical illness: – Decisional capacity – Institutional context – Strange providers – Lack of preparation

3. FSU C OLLEGE OF M EDICINE Background  Florida Advance Directive Law –Instruction directives (Living Wills), F.S. § 765.302 –Surrogate (agent) appointment, F.S. § 765.202; Durable power of attorney, F.S. chapter 709, is functional equivalent. May withhold or withdraw life-prolonging treatment if:  No reasonable probability of patient recovering capacity  End-stage condition, terminal, or PVS

4. FSU C OLLEGE OF M EDICINE  Substituted judgment (How much evidence?)  Best Interests standard

5. FSU C OLLEGE OF M EDICINE  Do Not Resuscitate (DNR) Orders  Florida Statutes § 401.45(3)  Implemented by Fla. Admin. Code r. 64B8-9.016  Department of Health “Yellow Form,” DH Form 1896, http://www.doh.state.fl.us/demo/trauma/PDFs/DNROF ormMultiLingual2004.pdf http://www.doh.state.fl.us/demo/trauma/PDFs/DNROF ormMultiLingual2004.pdf

6. FSU C OLLEGE OF M EDICINE  Default statute, F.S. § 765-401, authorizes a “proxy.” –Spouse –Adult child(ren) –Parent –Adult sibling(s) –Close relative –Close friend –Clinical social worker selected by ethics committee

7. FSU C OLLEGE OF M EDICINE  Guardianship  Ad hoc, default, bumbling through

8. FSU C OLLEGE OF M EDICINE Problems with the Status Quo – Patients without directives +/or agents – Interpretation and application disagreements – Document portability questions – Inadequate enforcement mechanisms – Surrogates or Proxies disagree, won’t decide, make decisions based on conflicts of interest

9. FSU C OLLEGE OF M EDICINE POLST as the Next Generation of Advance Planning – Nomenclature varies – Definition  Physician order, not an advance directive – National movement, www.polst.orgwww.polst.org

10. FSU C OLLEGE OF M EDICINE The POLST PARADIGM  Applicability – Not for everyone – People with advanced illness or frailty, whom the physician would not be surprised to see die within a year – Does not get implemented if patient is still decisionally capable

11. FSU C OLLEGE OF M EDICINE Virtues of the POLST – Combines the patient’s expertise on values and the physician’s expertise of medical means to achieve those values. Structure for discussion (not just a form). – Follows the person across care settings – More likely to be honored – Allows for more precision, less need for interpretation

12. FSU C OLLEGE OF M EDICINE  POLST ≠ Physician-assisted death (PAD)/Physisian-assisted suicide (PAS) – POLST is not about hastening death, but rather getting patients the kind of care they want. Patient-centered.

13. FSU C OLLEGE OF M EDICINE Florida POLST Status and Strategy  FSU Center as coordinator, http://med.fsu.edu/medlaw/POLST http://med.fsu.edu/medlaw/POLST  Florida POLST Facebook, https://www.facebook.com/floridapolst https://www.facebook.com/floridapolst  POLST Mailing List: Send email to nicholas.breeding@med.fsu.edu or call 850-645-9473 nicholas.breeding@med.fsu.edu

14. FSU C OLLEGE OF M EDICINE  Legal alternatives  Legislation  Regulation  Clinical consensus

15. FSU C OLLEGE OF M EDICINE  Clinical consensus – Fla. Stat. § 765.106 Preservation of existing rights— The provisions of this chapter are cumulative to the existing law regarding an individual’s right to consent, or refuse to consent, to medical treatment and do not impair any existing rights or responsibilities which a health care provider, a patient, including a minor, competent or incompetent person, or a patient’s family may have under the common law, Federal Constitution, State Constitution, or statutes of this state.

16. FSU C OLLEGE OF M EDICINE  Practical problems – DOH and Board of Medicine will not act without explicit legislative command – Physicians and EMS will not act without explicit immunity provisions – Conservative legal advice

17. FSU C OLLEGE OF M EDICINE  2015—POLST authorization and immunity in amendment to S.B. 1052 (Right to Try), then in substitute S.B. 1052, failed.

18. FSU C OLLEGE OF M EDICINE  2016—S.0662 and S.0664* (Senator Brandes) – Committees: Health Policy; Appropriations Subcommittee on Health and Human Services; Appropriations – https://www.flsenate.gov/tracker/login https://www.flsenate.gov/tracker/login

19. FSU C OLLEGE OF M EDICINE  H.B. 957 (Rep. Gonzalez) – Committees: Health and Human Services, Health Care Appropriations, Civil Justice Subcommittee, Health Quality Subcommittee – http://www.myfloridahouse.gov/Sectio ns/Bills/billsdetail.aspx?BillId=55909 http://www.myfloridahouse.gov/Sectio ns/Bills/billsdetail.aspx?BillId=55909

20. FSU C OLLEGE OF M EDICINE Policy/Statutory POLST Drafting Issues for 2017  Should the form content be specified in statute? Must the approved form be used?  Which specific medical interventions should be listed as options?  Require statement of reasons (e.g., diagnosis) for the POLST for this patient? Restrict permissible reasons (e.g., require “terminal” illness)?

21. FSU C OLLEGE OF M EDICINE  Who (besides physicians) may write a POLST?  Who (besides physicians) may discuss a POLST with the patient?  Must patient or surrogate consent be documented on the form by signature?

22. FSU C OLLEGE OF M EDICINE  Extent of surrogates’ authority to consent to POLST on behalf of a patient lacking decisional capacity?  Immunity for providers for following a POLST?  Penalties for provider non-compliance?  Originals vs. Copies/Faxes?  Conflicts between POLST and advance directives?

23. FSU C OLLEGE OF M EDICINE Registry Questions – Who has access? – Confidentiality and security of data? HIPAA compliance? – Quality control, timeliness, updating of data? Liability for inaccurate data entry?

24. FSU C OLLEGE OF M EDICINE Policy Questions for Healthcare Institutions  How does POLST fit with institutional by-laws and protocols?  Recognition of POLST signed by physician without privileges in that institution?  Recognition of POLST signed by non-physician?

25. FSU C OLLEGE OF M EDICINE Ramifications for Health Care Consumers – Discuss with your physician – Update and harmonize all advance planning documents. – Assure family understanding – Political activity (legislative and regulatory)

26. FSU C OLLEGE OF M EDICINE Conclusion  Legislation would only be the beginning: – Regulation/form development – Education of health care providers, attorneys, and the public