Transcript Advance Mental Health Care Directives

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
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
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
No
•
2
Slightly
3
Mod.
4
5
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
10/00 - 9/01
10/01 - 9/02
10/02 - 9/03
10/03 - 9/04
10/04 - 3/05
Mntl Hlth - 44 Hlth - 1
Mntl Hlth - 17 Hlth - 11
Mntl Hlth - 14 Hlth - 15
Mntl Hlth - 18 Hlth - 17
Mntl Hlth - 12 Hlth - 17
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.
READ THE STATUTE ONLINE:
http://www.capitol.hawaii.gov/site1/docs/docs.asp?press1=docs
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?
< 1%
• N = 240
35%
Yes
65%
No
No Response
Question 2 - Degree of Awareness
• As a mental health provider how familiar
are you with the details of the State of
Hawaii’s AMHCD statute?
• N = 240
7%
46%
Not Fam iliar
47%
Som ew hat
Fam iliar
Very Fam iliar
Question 3 - Utilization
• In the past year, approximately how many
Advance Directives have been completed
by consumers that you are familiar with?
• N = 240
11%
5%
0
13%
1-3
4 - 24
71%
25+
Question 4 - Utilization
• Of the consumers with which you have
regular substantial contact approximately
what percentage have completed an
AMHCD?
• N = 240
15%
0
1-10%
17%
67%
>10%
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?
< 1%
• N = 240
10%
89%
Yes
No
No Response
Question 6 - Satisfaction
• If yes, how would you generally rate the
overall satisfaction of those consumers
whose Advance Directives were enacted?
No Response
• N = 29
Dissatisfied
17%
29%
42%
Mostly
Dissatisfied
Mixed
Mostly
Satisfied
Satisfied
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
Are you aw are that the State of Haw aii has an AMHCD law?
166
22%
No
Yes
572
78%
How w ould you de scribe your k now ledge of Hawaii's AMHCD law ?
Poor
Average
Good
36
22%
65
39%
65
39%
N = 166*
Have you e ver comple ted an AMHCD?
No
Yes
46
28%
120
72%
N = 166
The first time you complete d your AMHCD, did you specifically choos e
the type of treatment you w ould lik e to re ce ive ?
8
17%
No
Yes
38
83%
N = 46
The first time you complete d your AMHCD, did you specifically
des ignate one or more people to mak e tre atm ent de cisions for you?
No
Yes
11
24%
35
76%
N = 46
How m any tim e shas your AMCHD bee n us ed?
2
4%
1 1
2% 2%
0
1
2
3
4
5
6
20
40
3
7%
4
9%
19
41%
2
4%
4
9%
10
22%
N = 46
How s atisfied w ere you w ith the de cision to us e your AMHCD?
2
7%
2
7%
Very Dissatisfied
Mixed
Satisfied
Very Satisfied
13
48%
10
37%
N = 27
How s atisfied w ere you w ith the treatme nt you rece ived while your
AMHCD w as in effect?
3
11%
1
4%
Very Dissatisfied
Diss atisfied
Satisfied
Very Satisfied
13
48%
10
37%
N = 27
How s atisfied w ere you w ith the actions of the people who m ade
tre atm ent de cisions for you?
3
11%
2
7%
12
44%
10
37%
N = 27
Very Dissatisfied
Mixed
Satisfied
Very Satisfied
How s atisfied are you w ith having an AMHCD?
2
7%
1
4%
Very Dissatisfied
Mixed
Satisfied
Very Satisfied
14
52%
10
37%
N = 27
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 Comments
or 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 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: [email protected]