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Planning Ahead for Incapacity: Health Care Decision-making Charles P. Sabatino

Planning Ahead for Incapacity: Health Care Decision-making Charles P. Sabatino Commission on Law and Aging American Bar Association December 2008. These slides are available at: http://www.abanet.org/aging/cle/home.shtml. Legal Background A. Introduction

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Planning Ahead for Incapacity: Health Care Decision-making Charles P. Sabatino

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  1. Planning Ahead for Incapacity: Health Care Decision-making Charles P. Sabatino Commission on Law and Aging American Bar Association December 2008 These slides are available at: http://www.abanet.org/aging/cle/home.shtml

  2. Legal Background • A. Introduction • B. Sources of the Right to Consent to or Refuse • Medical Treatment • C. Limits On The Right To Refuse Treatment? • D. Is There A Right To Demand Particular • Treatments? • E. Informed Consent. • F. Determining Capacity • G. Decision-making Standards • H. Advance Directive Legislation P. 1-22

  3. Key HCDM Cases Supreme Court P. 5-7 • Cruzan v. Director, Mo. Dept. of Health(1990) • Recognized Liberty Interest in refusing med treatment • Nutrition & Hydration not different from any other • treatment • Considerable leeway allowed for procedural safeguards, • e.g., MO’s “clear & convincing” standard. • Washington v. Gluksberg & Vacco v. Quill (1997) • No constitutional right to assistance in committing suicide. P. 11

  4. Key HCDM Cases District of Columbia Citation on P. 7 • In re A.C., 573 A.2d 1235, 1249 (D.C. 1990) • In exercising substituted judgment, court must: • Determine as best it can what choice that individual, if competent, would make with respect to medical procedures. • Consider totality of evidence, taking into account patient's past decisions re medical treatment and evidence concerning patient's value systems, goals and desires • Give greatest weight to previously expressed wishes.

  5. Substitute Consent in D.C. Health Care Decisions Act App 2, DC 8 D.C. Code § 21-2210 (b) A decision to grant, refuse or withdraw consent made pursuant to subsection (a) of this section shall be based on the known wishes of the patient or, if the wishes of the patient are unknown and cannot be ascertained, on a good faith belief as to the best interests of the patient.

  6. Substitute Consent in Md. Health Care Decisions Act App 2, MD 11 • § 5-605(c) • (2) In determining the wishes of the patient, a surrogate shall consider the patient's: • (i) Current diagnosis and prognosis with and without the treatment at issue; • (ii) Expressed preferences regarding the provision of, or the withholding or withdrawal of, the specific treatment at issue or of similar treatments; • (iii) Relevant religious and moral beliefs and personal values; • (iv) Behavior, attitudes, and past conduct with respect to the treatment at issue and medical treatment generally; • (v) Reactions to the provision of, or the withholding or withdrawal of, a similar treatment for another individual; and • (vi) Expressed concerns about the effect on the family or intimate friends of the patient if a treatment were provided, withheld, or withdrawn.

  7. Substitute Consent in Va. Health Care Decisions Act App 2, VA 5 § 54.1-2986 Any person authorized to consent to the providing, withholding or withdrawing of treatment … shall (i) prior to giving consent, make a good faith effort to ascertain the risks and benefits of and alternatives to the treatment and the religious beliefs and basic values of the patient receiving treatment, and … (ii) base his decision on the patient's religious beliefs and basic values and any preferences previously expressed by the patient regarding such treatment to the extent they are known, and if unknown or unclear, on the patient's best interests.

  8. Federal Law: P. 9-10 • PSDA (1990): Hospitals, NHs, HHAs and HMOs in Medicare or Medicaid must: 1. Give all adults at admission written info about: (1) patient hcdm rights, and (2) their policies re hcdm. 2. Ask you if you have AD and document. 3. Educate staff & community on ADs. 4. Prohibition: Can't discriminate based on ADs. • Military AD(10 U.S.C.A. § 1044c) is “exempt from any requirement of form, substance, formality, or recording that is provided for advance medical directives under the laws of a State”

  9. DC-MD-VA ComparisonChart in Appendix 1 A.-E. Key Statutes for DC/MD/VA

  10. Key Statutes District of Columbia App 1, p. 1 • A. Advance Directive Law • Living Will: D.C. Code Ann. §§ 7-621 to -630; • Durable Power of Attorney for Health Care: • D.C. Code §§ 21‑2201 to ‑2213 • B. Default Surrogate provision • D.C. Code § 21‑2210 • C. Mental Health Adv. Directive Law: None • D. EMS-DNR Law • D.C. Code §7-651.01 to §7-651.17, enacted 2001 • EMS protocol (App. 3) – Problems with implementation! • Anatomical Gifts: D.C. Code § 7-15201.01 to .11

  11. Key Statutes Maryland App 1, p. 1 A. Advance Directive Law Declaration or Advance Directive: Md. Health‑Gen. Code §§ 5‑60l to ‑626 B. Default Surrogate provision Md.Health - Gen. Code § 5‑605 C. Mental Health Adv. Directive Law: Md. Health-Gen. Code § 5-602.1 (enacted 2001) D. EMS-DNR Law Md. Health-General Code §§5-601, 5-608, 5-617 D-1 POLST: “Instructions on Current Life-Sustaining Treatment Options” (formerly Pt. Plan of Care). E. Anatomical Gifts: Est. & Trusts Code § 4-501 to 4-512

  12. Key Statutes Virginia App 1, p. 1 • A. Advance Directive Law • Va. Code Ann. §§ 54.1‑2981 to –2993 • B. Default Surrogate provision • Va. Code Ann. § 54.1‑2986 • C. Mental Health Adv. Directive Law: None • D. EMS-DNR Law • Va. Code Ann. §§54.1‑2987.1, -2988, -2989, and – • 2982. Regs: 12VAC5-65-10 to –110 • Anatomical gifts: Va. Code §§32.1-289 to 297.1

  13. DC-MD-VA ComparisonChart in Appendix 1 F. Required Formalities G. Oral Directives H. Prohibited Agents I. Limits on Agent’s Power J. Post-Mortem Authority of Principal K. Determination of Incapacity

  14. DC-MD-VA ComparisonChart in Appendix 1 L. Medical Preconditions M. Default Surrogate Consent N. Restrictions on Default Surrogate’s Authority O. Dispute Resolution among Surrogates P. Standard for Surrogate D-M Q. Authority of Agent vs. Guardian

  15. DC-MD-VA ComparisonChart in Appendix 1 R. Non-compliance • DC (7-627(b) re Declaration) Must “effect transfer…to another physician who will honor the declaration….” Failure to do so constitutes unprofessional conduct. • MD (5-613) Must inform person and “make every reasonable effort to transfer the patient….” • VA (54.1-2987) Must “make a reasonable effort to transfer the patient….”

  16. DC-MD-VA ComparisonChart in Appendix 1 S. Official Advance Directive Registry • DC –None • Md. Health‑Gen. Code Ann. §§5-619 to 5-626 (enacted in 2006) • Va. Code Ann. § 54.1-2994 (enacted in 2008) Regulations pending.

  17. II. Why ADs Have Not Worked as Well as Hoped A great idea but: • Most people don’t do. • When they do, a standard form doesn’t provide much guidance. • When they name an agent, they seldom explain their wishes to agent. • Even if they do, health care providers usually don’t know about the directive. • Even if providers know directive exists, it isn’t in medical record. • Even if in the record, it isn’t consulted. P. 22

  18. What ADs Can’t Do P. 23-24 • Can’t provide cookbook directions. • Can’t change fact that dying is complicated. • Can’t eliminate personal ambivalence. • Can’t be a substitute for Discussion. • Can’t control health care providers.

  19. P. 24 What ADs Can Do • CAN be an important part of a developmental process of advance planning • Especially with respect to appointing/informing a health care agent. 2. CAN help you stop and think and DISCUSS. • Discussion doesn’t need to be about specific medical decisions, but rather about VALUES & PRIORITIES: What’s important to you in living? What conditions of living may outweigh the value of continued life? 3. CAN empower and give DIRECTION if reflective of the patient’s voice. • Specific instructions are relevant to foreseeable decisions – as in a care plan, but need not be in AD.

  20. P. 24-25 III. More Effective Advance Planning 1. Emphasize the process, not the transaction. 2. Understand your client’s perceptions and fears 3. Understand your role as Lawyer. 4. Engage your client. Offer a workbook approach, e.g., see Lawyer’s (& Consumer’s) Tool Kit for Health Care Advance Planning(www.abanet.org/aging) 5. Give priority to appointment of Proxy. 6. Stress periodic review of one’s wishes. 7. Have you done your own advance planning?

  21. Drafting Issues P. 26 • Statutory Differences DC/MD/VA See Chart in APPENDIX 1 • Selecting an Agent • Who’s prohibited? • DC - HC provider (person or organization) • MD - Owner, operator or employee of a HC facility providing care to X, unless family or close friend • VA – None specified • Criteria – Tool Kitfor Advance Health Care Planning • Co-Agents? • What is your duty to consultation/education? See Making Medical Decisions for Someone Else: A Maryland Handbookand Tool Kit App 1. H

  22. Text from Tool Kit The ideal health care proxy… • Meets the legal criteria in your state for acting as agent or proxy or representative? • Would be willing to speak on your behalf. • Would be able to act on your wishes and separate his/her own feelings from yours. • Lives close by or could travel to be at your side if needed. • Knows you well and understands what’s important to you. • Could handle the responsibility. • Will talk with you now about sensitive issues and will listen to your wishes. • Will likely be available long into the future. • Would be able to handle conflicting opinions between family members, friends, and medical personnel. • Can be a strong advocate in the face of an unresponsive doctor or institution.

  23. P. 26-27 Drafting Issues 3. Agent’s Scope of Authority/Discretion • Be aware of statutory limits & post mortem authority (VA) • Be explicit • Maximum discretion? Do you want agent to be able to override written instructions, if any?

  24. P. 27-28 Drafting Issues Often overlooked– Authority to . . . • Make anatomical gifts, autopsy, disposition of remains • Contract for, hire, fire health care & support personnel • Direct care even if Pregnancy -- DC/MD/VA permissive • Change domicile. • Execute releases & waivers (the “carrot”) • Institute legal action (the “stick”). • Consent to experimental treatment • Delegate d-m during absence • Care for pets • Determine Visitation (especially important in Virginia) • Make mental health decisions (MD; be aware of § 5‑602.1)

  25. Drafting Issues P. 28 4. Effective Date: immediate or springing? • DC & MD – either. VA - springing 5. Determining D-M Capacity • DC -- 2 physicians, one must be psychiatrist One must examine w/in 1 day preceding cert. • MD – 2 physicians unless otherwise specified One must examine w/in 1 day preceding cert. If can’t communicate or unconscious, only 1 required. PVS confirmed by a neurologist, neurosurgeon, or other physician w/ expertise in cognitive functioning. • VA - 1 physician + either 2nd physician or licensed clinical psychologist after personal examination. Recert. required every 180 days. P. 28 + App 1. K

  26. Drafting Issues P. 28-29 6. Specific Instructions: pros & cons If you do include specific instructions… • People change their minds. • Recent medical history is important • Focus on quality of life. What does that mean? Benefits & burdens are subjective. • Never say never • Consider “values history” • What’s a benefit? What’s a burden? • A secondary illnesses can complicate matters

  27. . .

  28. Drafting Issues P. 30-31 Other instructions: • Anatomical Gifts (Agent can make in VA) • Pain Control • Engage principal to greatest extent possible • Nominate Guardian • Perhaps designate primary physician • Eliminate unwanted surrogates (troublemakers) • Carrots and sticks • Pregnancy • Pets • Personal/environmental/emotional. See Five Wishes at www.agingwithdignity.org

  29. www.agingwithdignity.org

  30. Drafting Issues P. 31 Post-execution Logistics • An invisible AD = no AD • Still haven’t talked to physician? • Wallet card • AD registries • Maryland S.B. 236, enacted 2006 • Va. Code § 54.1-2994, enacted 2008 • USLivingWillRegistry.com • Docubank.com • Full Circle Registry: protectedlivingwill.com • NationalLivingWills.com • America Living Will Registry: ALWR.com • Provide a framework for review

  31. Drafting Issues P. 32 My advice for when to review AD… When any of the 5 D’s occur: • You reach a new DECADE • You experience a DEATH of family or friend • You DIVORCE • You receive a new DIAGNOSIS • You have a significant DECLINE in your condition as measured by Activities of Daily Living (ADLs)

  32. P. 32-34 IV. HIPAA Issues Access to protected health information by… • Agent under health care DPA ? • Putative agent under springing power ? • Close family member ? See: www.hhs.gov/ocr/hipaa

  33. P. 30-32 IV. POLST – Beyond ADs • Last 30 years: standardizing patient communications – • statutory advance directives • Tipping Point: POLST Paradigm – standardizing • physicians EOL orders. Focus on here and now. • Oregon’s Physicians Orders for Life-Sustaining • Treatment – requires: • Doc to find out patient’s wishes re: CPR, care goals (comfort vs. treatment), antibiotics, N&H. • Translate into doctors orders on visually distinct (bright pink) med file cover sheet. • All providers ensure form travels with patient. Only MD has a version: LST Options Form

  34. See updated form at: http://www.oag.state.md.us/Healthpol/PPOC.htm

  35. Out of Hospital DNR Orders District of Columbia App 3 • AD is not enough to avoid CPR • Emergency Medical Services Non- • Resuscitation Procedures Act of 2000 • DC Act 13-486, approved November 29, 2000 • Establishes a “Comfort Care Order” which “authorizes EMS personnel to withhold cardiopulmonary resuscitation from a person if the person experiences cardiac or respiratory arrest as the result of a specified medical or terminal condition and to administer comfort care.”

  36. Draft

  37. Out of Hospital DNR Orders Maryland App 3 • Revised Maryland Medical Protocols for EMS • Providers, effective January 1, 2005 which are • available from the Maryland Institute for • Emergency Medical Services Systems at • See App. 1 for web page.

  38. Out of Hospital DNR Orders Maryland App 3 The following are acceptable for implementing the EMS/DNR protocol: (1) Original Maryland EMS/DNR Order Form (2) Copy of it. (3) Other State EMS/DNR Order Form (4) EMS/DNR Bracelet Insert (5) Medic Alert DNR Bracelet or Necklace (6) Oral DNR Order from EMS System Medical Consultation (7) Oral DNR Order from on-site physician

  39. Out of Hospital DNR Orders Maryland App 3 • The following are not acceptable for implementing the EMS/DNR protocol: • (1) Advance directives without an EMS/DNR Order • (2) Facility specific DNR orders • (3) Notes in medical records • (4) Prescription pad orders • (5) DNR stickers • (6) An oral request from someone other than a • physician

  40. Out of Hospital DNR Orders Virginia App 3 • Virginia Durable Do Not Resuscitate (DNR) Order • 12 VAC 5-65-10 to –110 • Unique document printed on distinctive paper by the Virginia DoH. The form has 3 sections: Physician’s Order, Patient's Signature, & Signature of Designated Agent or Other Authorized Decision Maker • Other DNR Orders • Qualified EMS personnel can recognize only • In a licensed health care facility. • when transporting a patient from one health care • facility to another

  41. SummaryProcess-Oriented Advance Planning • Don’t do one-stop AD • Your client probably can’t pay you enough to go through the process in depth, so give the client the tools to do the important part. • Give priority to the power of attorney • Use Workbook approach: Value worksheet/Thought-provoking exercises • Look at different model ADs • Stress that client has to talk to proxy & doctor • Help educate the agent/proxy • Periodic review – the 5 D’s.

  42. ResourcesAdvance Directive Forms P. 37 • Five Wishes Advance Directive. Published by Aging with Dignity. • A Guide to Living Wills and Health Care Proxies by Harvard Medical School. • Ethical Wills: Putting Your Values on Paperby Barry K. Baines (Perseus Publishing, 2001)

  43. P. 38 Resources • Lawyer’s (or Consumer’s) Tool Kit for Advance Health Care Planning ABA Commission on Legal Problems of the Elderly (2000). www.abanet.org/aging • Making Medical Decisions for Someone Else: A Maryland Handbook • Handbook for Mortals: Guidance for People Facing Serious Illness, by Joanne Lynn, MD, and Joan Harrold, MD (NY: Oxford University Press, 1999). • Hard Choices for Loving People: CPR, Artificial Feeding, Comfort Measures Only and the Elderly Patient, by Hank Dunn .

  44. Final Thought Circumstances change but the question remains the same as in 1982: “How to foster a relationship between patients and professionals characterized by mutual participation and respect, and by shared decision-making” - President’s Cmsn for the Study of Ethical Problems in Medicine & Biomedical & Behavioral Research

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