Health Care Directives

1. Health Care Directives Patricia M. Siebert Minnesota Disability Law Center/MMLA, Federal Protection and Advocacy System for Minnesota psiebert@mylegalaid.org 612-746-3734

2. Today’s presentation will cover: • Part 1: Basics of health care directives • Part 2: Directives, medications and early intervention • Part 3: How to write a good health care directive • Questions about health care directives • A walk through the MDLC “combined directive”

3. Part 1: Basics of health care directives

4. Right to Bodily Integrity “ No right is held more sacred, or is more carefully guarded by the common law, then the right of every individual to the possession and control of his own person, free from all restraint or interference of others, unless by clear and unquestionable authority of law.” Minnesota Supreme Court,1976

5. self- determination = control over one’s life • When people exercise self-determination, they become “causal agents . . . actors in their lives instead of being acted upon” (Wehmeyer, Palmer, Agran, Mithaug, & Martin, 2000, p. 440). • People who exercise greater self determination have a better quality of life, better employment, and more community integration. (Powers et al., 2012; Shogren, Wehmeyer, Palmer, Rifenbark, & Little, 2014;Wehmeyer and Schwartz, 1997; Wehmeyer & Palmer, 2003) • Slide borrowed from National Resource Center for Supported Decision-making.

6. What are the basic Components of an “Advance” Directive? • Instructions: A legally recognized document with instructions-“directives”- on medical care, written in advance of the anticipated need – ‘now, for later’—same basic concept as a will. • Agent: A person has option to name a decision-making agent (‘health care power of attorney’) to carry out instructions. • Incapacity: Usually goes into effect when a person lacks the mental capacity to make informed decisions about medical care; incapacity determination is usually made by attending doctor, but the statute says “unless otherwise specified.” (145C.02)

7. Two laws, but in reality one directive • The Advance Psychiatric Directive (or “declaration”) applies onlyto ECT and antipsychotic medications. §253B.03,Subd.6d. • The Health Care Directive applies to end of life and health care instructions, including other mental health treatment, including other medications. Ch. 145C. • A person can make a directive for any or all of these areas of health care, and do it in one document.

8. Advance Psychiatric Directive (APD) • “A competent adult may make a written declaration of preferences or instructions regarding intrusive MH treatment”. • “Intrusive MH treatment” = onlyneuroleptic medications and ECT; other instructions, other meds– use HCD • May appoint a ‘proxy’—same as a health care agent. • This law predated HCD statute; now psychiatric directive can be incorporated into the broader health care directive.§145C.05.

9. Health Care Directive (HCD) • Minnesota Statutes Chapter 145C is much broader in scope than APD; specifically says mental health APD can be incorporated into the HCD • Person making the directive = “principal”. • The principal may choose to name an agent with the authority to enact instructions and/or make health care decisions, even while having capacity. §145C.05, Subd. 2 (c) • The principal can choose different agents for mental and physical care.

10. Directive Legal Basics • Executed by an adult (age 18) with capacity to do so (legal presumption of capacity in law) in writing, signed and dated, two witnesses; or notarized (HCD). • APD: witnesses affirm that “the declarant understands the nature and significance of the declaration”. (MDLC form incorporates this.) • Witness or notary may not be the agent, and at least one witness may not be an employee of a current provider at the time of signing

11. Directive Legal Details • Can a case manager or crisis team member be a witness? Yes, if the other witness is NOT a provider. • Can a case manger be an agent? No. • A directive from another state meeting basic requirements is a legally sufficient, valid directive (145C.04) • There is not a specific form required in Minnesota.

12. Definitions of Note (HCD) • “Health care” means “any care, treatment , service or procedure to maintain, diagnose or otherwise affect a person’s physical or mental condition”, including one’s abode. 145C.01, Subd. 4. • “Decision-making capacity” is “ability to understand the significant risks, benefits, and alternatives to proposed health care and to make and communicate a health care decision.” 145C.01, Subd 1b.

13. Capacity: Who decides ? • Principal is presumed to have the capacity to execute a HCD/APD absent clear and convincing evidence to the contrary; burden on the person challenging a HCD. • Generally, the HCD and agent ‘activate’ when, in the judgment of the principal's attending physician, the principal lacks decision-making capacity, ‘unless otherwise specified’. 145C.02

14. But what is incapacity? A word about supported decision-making • If I can’t do my taxes on my own does that mean I am incapacitated? --If I don’t really understand the ramifications of what ‘termination of life support’ means, am I incapacitated? • Or-- is it that I need someone else’s knowledge and help in order to help me understand consequences of a decision, so I can make a choice that reflects my interests and values? This is not incapacity—it’s informed choice.

15. Appointment of Agent • May appoint an agent (min. age 18) to carry out instructions. The principal can choose different agents for mental and physical care. • Directive can allow agent to make decisions within instructions or guidelines set by principal, or based on agent’s knowledge of principal. • The principal may choose to give an agent the authority to make health care decisions, even while the principal has capacity. • Agent cannot be one’s attending provider at time of execution or activation, exception if family member, or if principal gives specific explanation why this provider is appointed.

16. Instructions under HCD §145C.05 may include: • Instructions regarding ‘intrusive MH treatment’-ECT or antipsychotic medications. • Instructions about other medications, including ones that help, ones to avoid, and permission to try new ones within principal’s guidelines. • Instructions about physical and other mental health treatment, including instructions on when to seek treatment, and what hinders recovery.

17. Other instructions may include: • Instructions as to when someone other than the attending physician may activate the directive: for ex: the principal depends on prayer for care of disease; or the principal is in a care facility authorized to do so • Given that agent can act even when not incapacitated, could person set parameters for when agent takes over? • Can also have funeral directives--instructions on disposition of remains and organ/tissue donations

18. Life Sustaining Care (§145C.15) • HCD can (should!) have instructions regarding nutrition, hydration and other end of life decisions • The provider must provide the directed end of life care or if unwilling, transfer the care to another provider willing to provide care. • Provider must notify the agent if unwilling to comply and document notification in record

19. Record Access • HCD can permits --or limit-- the agent to review and consent to disclosure of medical records, and may have instructions regarding disclosure. • HIPAA promotes the use of HCDs to access medical records. 45 CFR §164.524. • HIPAA also permits record disclosure “consistent with prior expressed wishes known to the provider”. “Expressed wishes” can be oral. 45 CFR §164.510

20. Obligations of Providers • Provider must obtain informed consent if the person is capable of giving it, unless agent is specifically authorized to consent. • HCD: provider must act in good faith per applicable standards of care (145C.11); APD: comply to the “fullest extent possible, consistent with reasonable medical practice, the availability of treatments requested, and applicable law.” (253B.03) • If the provider is unwilling to comply, provider must promptly notify the person and document in record.

21. §145C.11--Legal Immunity for: • Agent acting in good faith reliance on directive instructions • Provider relying on directive in good faith and within standards of care is not subject to criminal prosecution, civil liability or professional discipline • Ditto for provider relying on decisions made by an agent the provider believes is acting in good faith • A provider of intrusive MH treatment in “good faith reliance” on an APD is held harmless from liability if later finding of invalidity of the APD.

22. Legal Presumptions (§145C.10) • Person is presumed to have the capacity to execute a HCD/APD absent clear and convincing evidence to the contrary; burden on HCD challenger. • Presumption that HCD is valid absent clear and convincing evidence to the contrary. • Providers/agent are presumed to be acting in good faith absent clear and convincing evidence to the contrary.

23. Revocation requirements • A directive may be revoked at any time while a person has the capacity to do so (destruction, written revocation, verbally before 2 witnesses) 145C.10 • A later directive overrides an earlier directive. • In Minnesota, a directive cannot be revoked during a time of incapacity—’locks in’. • Directive “inactivates” when person regains capacity to make health care decisions

24. Penalties under §145C.13 • Gross misdemeanor for willfully concealing/canceling HCD, withholding knowledge of a revocation, falsifying a HCD, coercing execution of a HCD or requiring/prohibiting HCD as a condition of receiving services • Felony if one of the above actions results in bodily harm to the person

25. hcd Court cases are few • Vermont law allowed HCD of committed MI patient to be superseded after 45 days, if “no significant improvement”. This standard was not applied to others with HCDs. • 2nd Circuit: Vermont law violated the ADA: cannot treat valid HCD differently because person is later committed. Hargrave v. Vermont, 340 F.3d 27 (2nd Cir. 2003) • MN guardianship case: court discretion in appointing guardian over HCD nomination

26. Duke study on psychiatric directives • 2/3 of psychiatrists would honor a HCD but thought they would be used to refuse treatment • 94% of HCDs gave advance consent for at least one medication; 77% also rejected at least one medication.” No one liked Haldol.” Dr. Eric Elbogen • 75% listed side effects experienced on particular medications • 50% instructed staff on how to avoid seclusion and restraint • 88% named a hospital they would go to; 62% named hospitals they would refuse

27. Crisis Assessment and Advance Directives (Minn. Stat.§256B.0624) • Crisis assessment law includes determining whether a person has an advance directive: • “preferences communicated directly by recipient” OR • “[preferences] as communicated in a health care directive…the treatment plan…, a crisis prevention plan…or a wellness recovery action plan (WRAP) • The point is –has the person articulated choices for care and services? • If recipient does not have an advance directive, the “case manager or crisis team shall offer to work with the recipient to develop one”.

28. Part 2: Role of HCDs in medication decisions and early intervention

29. HCDs and ‘neuroleptic’ medications • Applies to patients committed under Ch.253B. • The provider “may subject a declarant to intrusive treatment in a manner contrary to the declarant’s expressed wishes only upon order of the court”. 253B.03, Subd.6d(d) • But court also must follow a valid directive. 253B.092; can order different care if court finds a directive is invalid. • Note--emergency medication “necessary to prevent serious, immediate physical harm to the patient or others” is otherwise possible but limited to 14 days or first hearing. §253B.092

30. Persons with capacity retain the right to make medication decisions. §253B.092 3 factors in evaluating capacity to make medication decisions: • Does the person demonstrate awareness of the situation, including reasons for hospitalization and possible consequences of the decision? • Does the person demonstrate an awareness of proposed treatment including risks, benefits, alternatives? • Does the person communicate a reasoned choice not based on delusion, even though not in his/her best interest?

31. Committed incapacitated Persons with a valid directive have the right to have it honored. • If a directive consents to neuroleptic medications, they may be administered without a court order; agent also able to consent to medications not specified in the directive if instructions allow this flexibility. §253B.092, Subd. 7. • If the directive refuses certain medications, the agent and the court are required to enforce a valid directive. §53B.092, Subd. 7: “If the person clearly stated what the person would choose to do in this situation when the person had the capacity to make a reasoned decision, the person's wishes must be followed.”

32. HCDs and early intervention §253B.066 The criteria for this form of involuntary commitment are not based on demonstrated harm to self or others, but on anticipated harm. • The court may order a variety of alternatives for up to 90 days, including day treatment, medication monitoring, and short term hospitalization not to exceed 10 days. • The court must determine that early intervention is the ‘least restrictive treatment program available that can meet the patient’s treatment needs’.

33. Early intervention criterion-- ‘enforcing choice’ Mentally ill and refuses to accept appropriate mental health treatment, and the person’s mental illness is manifested by grossly disturbed behavior or faulty perceptions and either: • A. the behavior/perceptions significantly interfere with the person’s ability to care for self AND the person, when competent, would have chosen substantially similar treatment under the same circumstances... • One clear example of this would be a HCD.

34. Why isn’t early intervention used? • Tendency of system to wait until someone deteriorates to point where they meet criteria through full commitment? A 6 month commitment has advantages.. • Community providers can be uncomfortable with taking someone who is not also committed to the commissioner; early intervention is designed as community commitment. • LRA and ADA support the use of early intervention v. full commitment.

35. Part 3: Questions about advance directives— and how to write one

36. Why have an Advance Directive? • Self-determination: HCD operationalizes an individual’s choices regarding treatment • Opportunity to document your best idea of a crisis prevention plan that works • Opportunity to authorize in advance who you want to receive/release information • Can incorporate your legal arrangements for care of your children, finances, pets • Can prevent the need for guardianship or commitment • Everyone needs to think about life and end of life decisions.

37. Give me an idea of what good instructions might look like. • I authorize my agent to get me mental health help if I start to… order lots of stuff from TV ads… if I start hearing voices telling me to hurt myself… I give permission for adjusting my meds or putting me in the hospital. • I want to go to a crisis bed if I am feeling self-destructive. • Take me to X hospital ER, where I trust the staff. • I do not want any injections because I am afraid of shots but I am OK with pills. • Because of past abuse, I cannot be put into restraints. This would worsen my condition. Do this instead…

38. What might a “suspect” directive look like? • I will not eat any hospital food because I know it’s poisoned • I will not take any medications because doctors are working for drug companies • I will need XYZ pain medication in this dose • I want Peter Breggin to be my health care agent An irrational directive will raise questions about validity or consistency with standards of care!

39. Why have an agent? • To see that your instructions are carried out • To work with care providers at a time when it is very hard for you to do so • An agent means a more flexible directive, able to adjust to unforeseen options or circumstances • A guardian cannot override valid HCD/agent absent a court order. §524.5-315

40. What about kids, pets and finances? • Kids: Designated standby custodian, Chapter 257B. • Enables designation of triggering events • Other parent must consent or be unable to consent due to unwillingness, absence in child’s life, termination etc. See form, p.19 of document. • Good for 60 days and form must be renewed after one year. • Finances: Power of Attorney form, §523.23 contains actual form. Also MN Attorney General has form. • Pets: make prior arrangements, with instructions and contacts placed in HCD. • Attach these documents to HCD.

41. Can I prepare a directive in the hospital or under commitment? • Under the law a person is assumed competent – even if committed • But if you are under a Jarvis order, you are legally incompetent to make neuroleptic medication decisions. • Directives should not be filled out when your judgment is impaired • Directives CAN be filled out as part of a discharge plan if you are doing well

42. How long is a directive in effect? • When your condition is such that you have regained the capacity to make informed decisions, your directive is no longer in effect • In the health care directive, you can choose to authorize your agent to make decisions for you even at a time when you have the capacity to make your own decisions. §145C.05

43. Who should have a copy of my directive? • Federal law requires that health care providers make the directive you give them a part of your medical chart • Those involved with your care/treatment-- Family/Friends? Case Manager? Hospital? • Your Agent • Keep your copy of the directive in a safe, accessible spot, for example your refrigerator • Carry a wallet card, put it on a flash drive, or put the directive on your smart phone or computer.

44. When should I rewrite a directive? • When you need to change the instructions in your directive—for example, new insurance with a different hospital, new doctor, a need to change your agent, etc. • Make it a point to review it once a year, when you do your taxes, change your smoke detector batteries, setting the clock back, etc.

45. Can a HCD be used to hospitalize me? • Yes, if you have an instruction consenting to hospitalization in certain circumstances, or if you give your agent the authority to consent to voluntary hospitalization. §145C.05, Subd. 2(a)(6) and §253B.04, Subd. 1. • Also, early intervention can be used “when person, when competent would have chosen substantially similar treatment”. 253B.065. This is in effect a court-enforced HCD.

46. What if my providers refuse to go along with my directive? • Provider must in good faith follow directives that are within reasonable medical practices/ standards and can be reasonably carried out. • But, a provider acting in good faith is not liable for refusing to follow a directive. • If refusing, provider must notify you and document why in your chart, and may transfer care. • You do not get more care or services than what you were reasonably and otherwise entitled to when you had capacity.

47. What if I refuse to go along with things I put in my directive? • Treatment providers have an obligation to follow a valid directive, but often defer to the courts because they are hesitant to do so, even given immunity in the HCD statute • Providers can file a petition for commitment and to administer medications, but a directive will have an effect on what the court decides • Agent can be instructed in the directive to work with providers to implement instructions and make other decisions as needed.

48. What about Court Orders and Medications if there’s an APD? • The provider “may subject a declarant to intrusive treatment in a manner contrary to the declarant’s expressed wishes only upon order of the court”. 253B.03, Subd.6d(d) • But court must follow a valid directive. 253B.092 • Note--emergency medication “necessary to prevent serious, immediate physical harm to the patient or others” is otherwise possible but limited to 14 days or first hearing. §253B.092

49. End of life decision-making • People need help understanding impact of relevant medical processes, nutrition, hydration, ventilators, etc • Internet resources, guidelines for care such as www.honoringchoices.org • Information/discussion with one’s family; one’s religious advisors • Conversations with one’s medical personnel • Learn about POLST doctor’s orders for EMT or ER at http://www.polstmn.org/

50. A brief trip through the pages of the MDLC “combined” directive • MH care-Beliefs, concerns, preferences (1-2) • Description of MH problems, instructions as to when capacity is impaired, what helps, what hinders • MH medications and ECT (3-4) • Other MH treatment, including emergency interventions, trusted providers, who can visit, permission to release records (4-6) • Appointment of mental health agent (6)