Advance Mental Health Care Directives

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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

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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

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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.

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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.

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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)

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Advance Psychiatric DirectivesPsychiatric
Advance Directives (PAD)Advance Directive for
Mental HealthAdvance Mental Health Care
DirectiveAdvance Directive
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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

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Examples of Types of Preferences

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

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Proxy Directives

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

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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

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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

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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

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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

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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

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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

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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

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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)

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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)

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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)

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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

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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.

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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

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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)

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Hawaii Disability Rights Center sponsored by
SAMHSA

• http//mentalhealth.samhsa.gov/

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

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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

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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

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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.

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

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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

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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.

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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

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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)

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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.

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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

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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.

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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)

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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

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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
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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
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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
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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
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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
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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)

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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.

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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

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• 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.

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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

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

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Any Commentsor Questions?
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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

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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
96816www.mhsret.organd Consulting
Psychologist to the Adult Mental Health
Division3465 Waialae Avenue, Suite 200 Honolulu,
Hawaii 96816www.amhd.orgPhone
808-735-3435Fax [phone]Email
wylie_at_hawaii.edu