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Advance Mental Health Care Directives

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Title: Advance Mental Health Care Directives


1
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

2
Advance Mental Health Care Directives
  • Presentation by
  • A. Michael Wylie, Ph.D.
  • Social Sciences Research Institute
  • College of Social Sciences
  • University of Hawaii at Manoa
  • February 13, 2008

3
Purpose of an Advance Directive
  • To establish a persons preferences for treatment
    should the person, in the future, become
    incompetent or unable to communicate those
    preferences to treatment providers.

4
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.

5
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)

6
Advance Psychiatric Directives Psychiatric
Advance Directives (PAD) Advance Directive for
Mental Health Advance Mental Health Care
Directive Advance Directive
7
History of Advance Directives
  • several high profile cases
  • karen ann quinlan
  • nancy cruzan
  • lead to cruzan decision 1990
  • congress enacted the patient selfdetermination
    act of 1990

8
Examples of Types of Preferences
  • Effective or non-effective medications
  • Specific treatments
  • How to handle emergencies
  • Hospital of choice
  • Notification of specific people

9
Proxy Directives
  • Designation of agent to make decisions
  • Breadth of decision-making
  • legal authority
  • a. substituted judgement
  • b. best interest

10
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

11
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

12
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

13
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

14
HISTORY OF ADVANCE MENTAL HEALTH CARE DIRECTIVES
  • 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

15
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

16
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 Hawaiis 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

17
SURVEY QUESTION 1. (YES/NO)
  • Have you heard about Hawaiis 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)

18
SURVEY QUESTION 2. (YES/NO)
  • If Yes, have you completed Hawaiis 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)

19
SURVEY QUESTION 3. (YES/NO)
  • If Yes, did you appoint a surrogate decision
    maker?
  • 3 of 6 who had completed an AMHCD had appointed a
    proxy decision maker (50)

20
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

21
SURVEY SUMMARY
  • The vast majority of consumers of mental health
    services in 1998 did not know about Hawaiis
    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.

22
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

23
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)

24
Hawaii Disability Rights Center sponsored by
SAMHSA
  • http//mentalhealth.samhsa.gov/

25
The HDRC modified the Bazelon Center form for
Advance Directives for Mental Health Care and
began a Statewide initiative in 1999
26
  • http//www.bazelon.org

27
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

28
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 Hawaiis 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

29
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.

30
READ THE STATUTE ONLINE
http//www.capitol.hawaii.gov/site1/docs/docs.asp?
press1docs
31
HAWAIIS 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

32
HAWAIIS 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

33
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.

34
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

35
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)

36
ARE PROVIDERS AWARE OF HAWAIIS 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.

37
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
    providers perspective on
  • Their own Awareness of the law
  • Consumer Utilization of AMHCDs
  • Consumer Satisfaction with AMHCDs

38
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.

39
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)

40
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

41
Question 1 - Awareness
  • Are you aware that the State of Hawaii has a law
    related to Advanced Mental Heath Care Directives?
  • N 240

lt 1
35
65
42
Question 2 - Degree of Awareness
  • As a mental health provider how familiar are you
    with the details of the State of Hawaiis AMHCD
    statute?
  • N 240

7
47
46
43
Question 3 - Utilization
  • In the past year, approximately how many Advance
    Directives have been completed by consumers that
    you are familiar with?
  • N 240

5
11
13
71
44
Question 4 - Utilization
  • Of the consumers with which you have regular
    substantial contact approximately what percentage
    have completed an AMHCD?
  • N 240

15
17
67
45
Question 5 - 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

lt 1
10
89
46
Question 6 - Satisfaction
  • If yes, how would you generally rate the overall
    satisfaction of those consumers whose Advance
    Directives were enacted?
  • N 29

17
29
42
47
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 (N23)

48
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

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Summary of 2005 Consumer Survey
  • Only 22 were aware of AMHCD Law
  • Of this group, only 28 (n48) 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.

60
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

61
  • 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
    consumers rights.
  • Practice
  • Clinical and supervisory staff should be familiar
    with Chapter 327G, HRS.

62
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

63
http//www.nrc-pad.org/index.php
64
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

65
Any Comments or Questions?
66
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

67
A. Michael Wylie, Ph.D. Associate Professor and
Director,  Mental Health Services Research,
Evaluation, and Training Program of
the University of Hawaii at Manoa 3465 Waialae
Avenue, Suite 200 Honolulu, Hawaii
96816 www.mhsret.org and Consulting
Psychologist to the Adult Mental Health
Division 3465 Waialae Avenue, Suite 200 Honolulu,
Hawaii 96816 www.amhd.org Phone
808-735-3435 Fax 808-735-3436 Email
wylie_at_hawaii.edu
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