Advance Mental Health Care Directives Resources for from this presentation can be downloaded from: Help in understanding.

Advance Mental Health Care Directives

Resources for from this presentation can be downloaded from: www.mhsret.org/amhcd

Help in understanding the website address:– mhsret = Mental Health Services

Research, Evaluation, and Training Program at UH

– amhcd = Advance Mental Health Care Directive

Advance Mental Health Care Directives

Presentation by

A. Michael Wylie, Ph.D.

Social Sciences Research Institute

College of Social Sciences

University of Hawai`i at Manoa

February 13, 2008

Purpose of an Advance Directive

• To establish a person’s preferences for treatment should the person, in the future, become incompetent or unable to communicate those preferences to treatment providers.

Mental Health Care Advance Directive

• Specifies treatment preferences for times when a consumer of mental health services is unable to communicate preferences as a consequence of episodic deterioration in mental health.

“End-of-Life Health Care Directive” is Different from a “Mental Health Directive” in important ways:

• End-of-life directives assume chronic deterioration in mental ability leading to death vs. cyclical patterns of competency seen in mental illness– Establishment of of proxy decision maker

is easier under Uniform Health Care Act (Chapter 327E)

– revocation can occur at any time by patient (error on side of caution)

Advance Psychiatric Directives

Psychiatric Advance Directives (PAD)

Advance Directive for Mental Health

Advance Mental Health Care Directive

Advance Directive

History of Advance Directives

• several high profile cases – karen ann quinlan

– nancy cruzan

• lead to cruzan decision 1990

• congress enacted the patient self–determination act of 1990

Examples of Types of Preferences:

• Effective or non-effective medications

• Specific treatments

• How to handle emergencies

• Hospital of choice

• Notification of specific people

Proxy Directives

• Designation of agent to make decisions:

– Breadth of decision-making– legal authority

a. substituted judgement

b. best interest

Elements Necessary to Use and Execute AMHCDs

• Education of consumers

• Access to legal aid if needed

• Training materials

• Competency during completion

• Communication and dissemination

• Provider involvement and awareness, respectful, good faith efforts in compliance

Issues in Designating an Agent

• Finding someone (cannot be a treatment team member)

• An agent must be willing and able to accept role

• Can designate back-up agents if primary agent is unavailable or unwilling to serve

Conditions Under Which Compliance Will Be Enhanced

• Clear directive, specific, yet not overly restrictive

• Compatible with accepted medical practice

• Awareness and dissemination

• Appointment of a proxy decision maker who is very familiar with preferences

CONDITIONS UNDER WHICH COMPLIANCE MAY NOT OCCUR

• Unreasonable treatment preferences

• Illegal or unapproved drugs

• Financial conditions and resources

• Compliance will not occur:– court order takes precedence

– if life threatening emergency to self or others, not

likely to be followed

– if provider is unaware of existence

• Minnesota was the first State in the Nation to adopt an Advance Mental Health Care Directive in 1991

• Hawaii was the second State in the Nation to adopt an Advance Mental Health Care Directive in 1992

HISTORY OF ADVANCE MENTAL HEALTH CARE DIRECTIVES

CHAPTER 327F, HRS: MEDICAL TREATMENT DECISIONS FOR PSYCHOTIC DISORDERS ACT

• ACT 84, 1992 Session Laws of Hawaii• Did not permit designation of a proxy

decision maker • Heavily focused on the administration of

psychotropic medications• No sample form included• Repealed by new law in 2004

ADVANCE DIRECTIVE SURVEY OF CONSUMERS IN HAWAII

• During 1997-2000, SAMHSA funded an evaluation study in Hawaii allowing a UH research team to ask consumers statewide about their use and familiarity with Hawaii’s Advance Directive Law (Chapter 327F, HRS)

• Questions were included in a face-to-face interview with a sample of 563 Medicaid recipients receiving either managed care (207 consumers) or fee-for-service (356 consumers) mental health treatment

SURVEY QUESTION 1. (YES/NO)

1. Have you heard about Hawaii`s advance directive for mental health treatment (that is, giving permission for psychiatric treatment when it is needed, even if it is against your will)?

• 7% answered “Yes” • (39 of the 563 participants)

SURVEY QUESTION 2. (YES/NO)

2. If Yes, have you completed Hawaii’s advance directive for mental health treatment?

• 6 of 39 who had heard of the law answered yes (15%)

• This represents only 1% of the entire sample (6 out of 563)(15%)

SURVEY QUESTION 3. (YES/NO)

3. If Yes, did you appoint a surrogate decision maker?

• 3 of 6 who had completed an AMHCD had appointed a proxy decision maker (50%)

SURVEY QUESTION 4. (5 POINT RATING SCALE )

4. If COMPLETED, were you satisfied with the document?

1 2 3 4 5

No Slightly Mod. Quite Extremely

a bit

• The mean rating on Q4 for those completing an AMHCD was 3.4

SURVEY SUMMARY

• The vast majority of consumers of mental health services in 1998 did not know about Hawaii’s Advanced Directives law. In this study, only 7% stated they had heard about the law and only 1% of those interviewed had completed an AMHCD.

Two Concurrent Activities Also Occurred during this same general period:

• Chapter 327E, HRS (Uniform Health Care Decision Act, Modified) was established amongst great controversy

• The Hawaii Disability Rights Center began facilitating Advance Mental Health Care Directives following the “Bazelton Model”

End-of-Life Health Care Directive is Different from a Mental Health Directive in important ways:

• End of Life Directives Assume Chronic Deterioration Mental Ability Leading to Death vs. Cyclical Patterns of Competency Seen in Mental Illness– Establishment of of proxy decision maker

is easier under Uniform Health Care Act (Chapter 327E)

– revocation can occur at any time by patient (error on side of caution)

Hawaii Disability Rights Center sponsored by SAMHSA

• http://mentalhealth.samhsa.gov/

The HDRC modified the Bazelon Center form for Advance Directives for Mental Health Care and began

a Statewide initiative in 1999

• http://www.bazelon.org

# AMHCDs COMPLETED BY HDRC FROM OCT. 1999 - MARCH 2005

• 10/99 - 9/00 Mntl Hlth - 44 Hlth - 1

• 10/00 - 9/01 Mntl Hlth - 17 Hlth - 11

• 10/01 - 9/02 Mntl Hlth - 14 Hlth - 15

• 10/02 - 9/03 Mntl Hlth - 18 Hlth - 17

• 10/03 - 9/04 Mntl Hlth - 12 Hlth - 17

• 10/04 - 3/05 Mntl Hlth - 15 Hlth - 9

TOTAL 120 70

COMBINED TOTAL = 190

PARALLEL TO THIS INITIATIVE THE DOH BEGAN A PROCESS TO DEVELOP A MODEL AMHCD LAW

• The 1998 survey led the DOH to examine potential reasons for this low rate of knowledge and use of AMHCDs

• It was determined that Hawaii’s law was inadequate as a basis for AMHCDs

• After stakeholder consultation, a bill was introduced in 2003 legislative session and was passed by the 2004 legislature

SB 1238 SD2 HD2 CD1• The bill was approved as Act 224 by

Governor Lingle on July 13, 2004

• The law became immediately effective

• Act 224 was codified by the reviser of statutes as Chapter 327G, HRS

• Act 224/Chapter 327G includes a sample form (aka, the “short form”) which can be modified if substance is retained.

http://www.capitol.hawaii.gov/site1/docs/docs.asp?press1=docs

READ THE STATUTE ONLINE:

HAWAII’S AMHCD LAW STATES:

• A competent adult can make instructions and preferences for MH Tx

• Can be combined with an “end-of-life” healthcare directive per Chapter 437E

• Can designate primary and back-up agents to make treatment decisions

• Must be written and either notarized or signed by two competent witnesses

HAWAII’S AMHCD STATES (Cont.):

• More recent AMHCDs take precedent over earlier AMHCDs if in conflict

• Can be revoked any time the consumer has capacity and in any fashion (verbal)

• Can not be revoked if consumer is found to lack decision making capacity

• Can be overridden by court order or if an emergency situation (imminent harm to self or others) exists

DETERMINATION OF CAPACITY

• A determination that the person lacks capacity must be jointly agreed upon by two people, one of which must be a supervising physician and the other either a physician or psychologist.

• An “Agent” (proxy decision maker), if specified, must be notified promptly upon loss of ability to make healthcare decisions.

DEFINITION OF “CAPACITY”

• Capacity is defined as a persons ability to understand the significant benefits, risks, and alternatives to proposed mental health care or treatment and to make and communicate a mental health care decision

• A determination that the person has regained decision making capacity can be made by the supervising physician

LIABILITY FOR NOT FOLLOWING

• Providers not complying with AMHCDs are liable for damages and legal fees

• However, providers are not required to provide treatment contrary to generally accepted health care standards

• A exemption from liability is provided for providers and designated agents acting in “good faith” (e.g. unaware of AMHCD)

ARE PROVIDERS AWARE OF HAWAII’S AMHCD LAW?

• Earlier research (1998) showed that only 7% of consumers were aware of AMHCDs and only 1% had completed an AMHCD

• One of the best ways to inform consumers of the opportunity to complete an AMHCD is through the education that consumers receive from providers.

2004 HAWAII PROVIDER SURVEY

• To evaluate the effectiveness of the new law a baseline provider survey was conducted during the fall of 2004

• The objective of the survey was to assess provider’s perspective on: – Their own Awareness of the law– Consumer Utilization of AMHCDs– Consumer Satisfaction with AMHCDs

SURVEY METHODOLOGY

• Developed a 6 Question Survey • Distributed through the AMHD

Office of Consumer Affairs• Batches of surveys were mailed to

the head of each State owned or funded provider agency

• Front line clinical staff were asked to complete and return the survey by fax.

SURVEY DISTRIBUTED TO ALL AMHD PROVIDERS

• Survey distributed to 1,290 providers and staff including the following:– CMHC (N = 174)– Clubhouse (N = 49)– HSH (N = 400)– POS (N = 667)

RESPONSE RATE • Respondents

–CMHC = 54/174 = 31%

–HSH = 17/400 = 4%

–POS = 154/667 = 23%

–Unknown = 15

–Total N = 240/1290 = 18.6%

–Return rate excluding HSH = 25%

Question 1 - Awareness• Are you aware that the State of Hawaii has

a law related to Advanced Mental Heath Care Directives?

• N = 240

Yes

No

No Response

65%

35%

< 1%

• As a mental health provider how familiar are you with the details of the State of Hawaii’s AMHCD statute?

• N = 240

Not Familiar

SomewhatFamiliar

Very Familiar

47%

46%

7%

Question 2 - Degree of Awareness

Question 3 - Utilization• In the past year, approximately how many Advance

Directives have been completed by consumers that you are familiar with?

• N = 240

0

1-3

4 - 24

25+71%

11%5%

13%

• Of the consumers with which you have regular substantial contact approximately what percentage have completed an AMHCD?

• N = 240

0

1-10%

>10%67%17%

15%

Question 4 - Utilization

• Do you have direct knowledge of consumers whose Advance Directives have been enacted as a result of their loss of treatment making capacity?

• N = 240

YesNoNo Response89%

10%

< 1%

Question 5 - Utilization

• If yes, how would you generally rate the overall satisfaction of those consumers whose Advance Directives were enacted?

• N = 29 No Response

Dissatisfied

MostlyDissatisfied

Mixed

MostlySatisfied

Satisfied

Very Satisfied

29%

42%

17%

Question 6 - Satisfaction

PROVIDER SURVEY CONCLUSIONS• Bad News: Low provider awareness and consumer

usage– 35% of providers were unaware of law– Only 7% report being very familiar with the law– 67% of all providers do not have contact with a

consumer who has completed an AMHCD• Good News: Small group of providers are very

aware and know of consumers using AMHCDs– Satisfaction results mixed; Providers reported

that approximately 60% of consumers were satisfied with outcome (N=23)

2005 Consumer Survey

1. 13 Question Survey Administered by United Self Help Consumer Assessment Team and MHSRET

2. Phone Surveys

3. In-Person Surveys at 4 Clubhouse Programs

4. Total of 748 Surveys with 738 usable

16622%

57278%

YesNo

Are you aware that the State of Hawaii has an AMHCD law?

N = 166*

6539%

6539%

3622%

GoodAveragePoor

How would you describe your knowledge of Hawaii's AMHCD law?

N = 166

4628%

12072%

YesNo

Have you ever completed an AMHCD?

N = 46

3883%

817%

YesNo

The first time you completed your AMHCD, did you specifically choosethe type of treatment you would like to receive?

N = 46

3576%

1124%

YesNo

The first time you completed your AMHCD, did you specificallydesignate one or more people to make treatment decisions for you?

N = 46

12%

12%2

4%

37%

49%

24%

49%

1022%

1941%

40206543210

How many times has your AMCHD been used?

N = 27

1348%

1037%

27%

27%

Very SatisfiedSatisfiedMixedVery Dissatisfied

How satisfied were you with the decision to use your AMHCD?

N = 27

1348%

1037%

14%

311%

Very SatisfiedSatisfiedDissatisfiedVery Dissatisfied

How satisfied were you with the treatment you received while yourAMHCD was in effect?

N = 27

1244%

1037%

27%

311%

Very SatisfiedSatisfiedMixedVery Dissatisfied

How satisfied were you with the actions of the people who madetreatment decisions for you?

N = 27

1452%

1037%

14%

27%

Very SatisfiedSatisfiedMixedVery Dissatisfied

How satisfied are you with having an AMHCD?

Summary of 2005 Consumer Survey• Only 22% were aware of AMHCD Law• Of this group, only 28% (n=48) had ever completed an

AMHCD• Consistent with 1998 Survey this represents less than

1% of the total sample• Consumers completing AMHCDs report being able

choose treatments (83%) and proxy decision makers (76%).

• 40% of consumers with AMHCDs have never had them implemented.

• When implemented, 80%-90% of consumers report a positive experience while 10%-20% report a negative or mixed experience.

Sample Forms

• Can vary from simple to complex

• Trade-off between widespread use vs. legal challenges

• As forms become more complex, the fewer people will complete them

• Little case law exists on how the courts will view these.

• Chapter 327G provides basic form

Policy

• Consumers shall be afforded every opportunity to have an advance mental health care directive (AMHCD) that shall be easily accessed by providers who will honor and respect the consumer’s rights.

Practice

• Clinical and supervisory staff should be familiar with Chapter 327G, HRS.

Where to Get AMHCDs

• Short form can be downloaded from the amhd website: http://amhd.org by following “for consumers” link

• From the Bazelon Center website www.bazelon.org

• An adapted Bazelon plus Chapter 327G (the “long form”) from the Hawaii Disability Rights Center

http://www.nrc-pad.org/index.php

Where might this go from here?

• Developing the AMHD ACCESS Line as a Central Repository for Community

• Providing Education to Hospital ERs, Providers and Consumers

• Legislative Change to Allow Identification on Drivers License or State IDs

Any Commentsor Questions?

Mahalo for Your Attention!

For More Information, Contact:

• Hawaii Disability Rights Center– 949-2922– Toll free: 1-800-882-1057

• www.bazelon.org

• http://amhd.org

A. Michael Wylie, Ph.D.Associate Professor and Director, Mental Health Services Research, Evaluation, and Training Program of the University of Hawaii at Manoa3465 Waialae Avenue, Suite 200 Honolulu, Hawaii 96816

www.mhsret.org

and

Consulting Psychologist to the Adult Mental Health Division3465 Waialae Avenue, Suite 200 Honolulu, Hawaii 96816

www.amhd.org

Phone: 808-735-3435Fax: 808-735-3436Email: [email protected]