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Advance Directives Testimony
James W. Jordan, Jr.
Executive Director
National Alliance for the Mentally
Pennsylvania Chapter
(NAMI PA)
House Committee on Health and Human Services
Public Hearing on House Bill 2036
January 29, 2004
Good Morning Chairman Kenney and distinguished members of the Health
and Human Services Committee. Thank you for providing an opportunity for
the National Alliance for the Mentally Ill, Pennsylvania Chapter (NAMI
PA) to testify on House Bill 2036.
NAMI PA is the largest statewide non-profit organization that is dedicated
to helping mental health consumers and their families rebuild their lives
and conquer the challenges posed by severe mental illness. Our purpose
is to help all people who are affected by mental illnesses, including
families, consumers, friends, neighbors and coworkers. We strive to educate
the public about the true nature of mental illness to combat the stigma
and discrimination often faced by persons with mental illness. We have
60 affiliates across the Commonwealth who provide support, education and
advocacy within their communities.
We would like to commend this Committee and its members, the Mental Health
Association, the Pennsylvania Mental Health Consumers Association, Carol
Horowitz, a family member and parent of an individual with mental illness,
and other individuals and organizations on their work in drafting this
legislation. We would also like to commend you, Representative Kenney,
for your leadership in addressing this important and complex issue.
Laws specifically authorizing psychiatric advance directives have been
enacted in twelve states. The first law authorizing psychiatric advance
directives was enacted in Minnesota in 1991. Alaska, Hawaii, Idaho, Illinois,
Maine, North Carolina, Oklahoma, Oregon, South Dakota, Texas and Utah
have since followed suit. All of these laws establish the right of persons
with mental illnesses to write directives, when competent, indicating
their wishes concerning acceptance or refusal of psychiatric treatment.
Some of these laws (e.g. Alaska and Oregon) apply only to written declarations
concerning inpatient psychiatric treatment, psychotropic medications,
and electroconvulsive therapy. Others apply more generally to all forms
of psychiatric treatment.
NAMI supports the development of advance directives. To help demonstrate
our support of this concept we have incorporated this concept into our
Peer to Peer training program. This program helps consumers to have a
better understanding of mental illness and provides instruction on the
development of personal recovery plans and the development of individual
advance directives.
NAMI PA supports the intent of this bill. There are many potential benefits
to Psychiatric Advance Directives (PAD). These benefits include:
• Allowing consumers to make their own health care decisions;
• Enhancing communication between consumers, their family and their
treatment provider;
• Allowing for early intervention;
• Reducing court proceedings regarding involuntary treatment.
The use of advance directives for psychiatric decision making is relatively
new, and there are unresolved questions about the use of PADs. Ongoing
research projects and pending court decisions should provide more information.
In the meantime, PADs should be considered as a way to empower consumers
to take a more active role in their treatment, and as a way to avoid conflicts
over treatment and medication issues.
NAMI believes that every person with a brain disorder is entitled to
the same level of service afforded other physical illnesses. Every person
is also entitled to be fully informed about specific medications and procedures
and the risks, possible undesirable side effects of such medications and
procedures, and other options. The risks and possible undesirable side
effects of refusing treatment and what the alternatives are should also
be a part of this information process. Every consumer has a right to be
part of individual treatment planning. Every consumer has the right to
be informed of all community services and supports.
With adequate professional consultation, every person with a brain disorder
who has the capacity and competence to do so should be entitled to manage
his or her own treatment. When an individual lacks capacity and competence
because of his or her brain disorder, however, the substitute judgment
of others subject to sufficient safeguards with frequent review may be
justified in determining treatment and possible hospitalization.
NAMI supports the effort to develop processes by which caregivers and
service providers work collaboratively with persons with brain disorders
to develop plans for treatment, services, and supports that are followed,
when, and if, needed in the future. NAMI supports the appointment of healthcare
proxies or agents where necessary.
NAMI supports the proposed legislation but recommends that the following
areas require additional review and development:
Legal capacity or competence
While advance directives are quite promising as tools for empowering consumers
to more actively participate in their own treatment, there are legitimate
concerns about these instruments as well. One of the thorniest issues
concerns determinations of legal capacity or competence. Questions about
capacity arise at two different points in the process. First, declarants
must be competent at the time they draft advance directives for these
documents to be valid. Second, an advance directive may be used for healthcare
or psychiatric decisions only when the declarant is not competent to make
these decisions him/herself.
Most state statutes presume that people are competent at the time they
draft advance directives. These laws generally require the directive to
be signed by two adult witnesses who attest to the person’s capacity
at the time the instrument is drafted. More difficult questions arise
over determining capacity at the time the advance directives are used
for healthcare decisions. In some states, a judge must make capacity determinations.
In other states, such as Oregon, the law specifies that capacity determinations
may be made either by a judge or two physicians.
Refusal of all treatment
Another controversial issue concerns the potential use of psychiatric
advance directives to refuse all treatment. Thomas Szasz, a leading anti-psychiatry
proponent, was one of the first to advocate for the use of “psychiatric
living wills” as a mechanism for refusing psychiatric treatment.
All of the state laws authorizing psychiatric advance directives except
Maine specify that declarants may use these directives to consent or refuse
psychiatric treatment. Maine’s law authorizes the use of advance
directives specifically to indicate treatment preferences. It is silent
on whether these directives can be used to refuse treatment.
Confidentiality
NAMI supports the involvement of consumer and family members as partners
in
the development of policy and use of data for decision making and the
collaborative use of information by all stakeholders.
NAMI believes that consumers of healthcare services own their own health
records, especially those parts including any individual identifying information,
while providers and managed care organizations are custodians of these
records. Consumers have the right to inspect and amend their own healthcare
records. Providers and managed care organizations should be allowed the
use of aggregate data for purposes of quality assurance, and research.
Review of Psychiatric Advance Directives
Consideration should be given to establishing time frames for review and
reauthorization of psychiatric advance directives. This will help to ensure
that instructions are current and meet the needs of the consumer. Failure
to establish a review process could create a situation where outdated
advance directives could interfere with effective treatment.
Security of Trust Funds
NAMI believes that the assets of trusts established for the benefit of
persons with brain disorders should be secure from capture for any purposes
other that those prescribed in the documents establishing the trusts.
Revocation of Advance Directives
Another unresolved question concerns revocation of advance directives.
Clearly, an individual may revoke an advance directive when competent.
A more difficult question arises when an individual tries to revoke an
advance directive while actively symptomatic and in need of treatment.
For example, an individual may write an advance directive specifying preferred
medications and assigning health care power of attorney to a family member
to act in their behalf should they lose capacity to make treatment decisions.
Subsequently, during a relapse, they may seek to revoke their advance
directive and refuse all treatment. A lengthy court proceeding could ensue
to determine capacity and whether treatment refusal should be overridden.
This negates an important objective of advance directives, which is to
avoid court proceedings of this nature.
Proof of Dangerousness
Current interpretations of laws that require proof of dangerousness often
produce unsatisfactory outcomes because individuals are allowed to deteriorate
needlessly before involuntary commitment and/or court-ordered treatment
can be instituted. When the “dangerousness standard” is used,
it must be interpreted more broadly than “imminently” and/or
provably dangerous.
Involuntary Commitment
NAMI believes that all people should have the right to make their own
decisions about medical treatment. However, NAMI is aware that there are
individuals with brain disorders such as schizophrenia and bipolar disorder
who, at times, due to their illness, lack insight or good judgment about
their need for medical treatment.
Responsibility for determining court-ordered treatment should always be
vested with medical professionals who – in conjunction with the
individual, family, and other interested parties – must develop
a plan for treatment.
On behalf of the many families and individuals represented in our organization,
we thank you for the opportunity to comment on this important piece of
legislation. We look forward to working collaboratively with you to help
insure its passage. I would be happy to answer any questions you may have.
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