BILL ANALYSIS
SENATE JUDICIARY COMMITTEE
Martha M. Escutia, Chair
2003-2004 Regular Session
AB 2445 A
Assembly Member Canciamilla B
As Amended April 27, 2004
Hearing Date: June 15, 2004 2
Probate Code 4
GMO:rm 4
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SUBJECT
Advance Health Care Directives
DESCRIPTION
This bill would require the Secretary of State to issue
identification cards to persons who have registered their
advance health care directive information with the
statewide Advance Health Care Directive Registry. The cost
of issuing the identification cards would be included in
the fee currently chargeable by the Secretary of State for
registration in the Registry, which is limited to the
actual cost.
The bill would require a general acute care hospital,
within 24 hours of arrival of a patient who is unconscious
or otherwise incapable of communication in the hospital's
emergency department, to contact the Secretary of State to
inquire whether the patient has registered an advance
health care directive with the statewide Registry, if the
hospital finds evidence of the Registry's identification
card from the patient or the patient's family.
Finally, the bill would require the Secretary of State to
add, to the list of information received into and released
from the Registry, the registrant's advance health care
directive.
BACKGROUND
AB 891 (Alquist, Chapter 658, Statutes of 1999) established
(more)
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the Health Care Decisions Law, which also governs advance
health care directives. AB 891 repealed the law
establishing a central registry for powers of attorney for
health care or Natural Death Act declarations, which were
permitted prior to AB 891. AB 891 then established the
Advance Health Care Directive Registry, where individuals
may register specified information relating to an executed
advance health care directive, that may be made available
to any health care provider, the public guardian, or other
authorized person. The directive itself is not included in
the information that may be registered with the Secretary
of State.
Unfortunately, according to the author, few people actually
complete even the simplest form of the advance health care
directive, the do-not-resuscitate (DNR) order, let alone
register it in the Registry. In fact, according to the
author, there are only 500 registrants in the Registry
since it was established by AB 891. The author however
contends that, according to the 2002 study published in the
Archives of Internal Medicine entitled "Early Intervention
in Planning End-of-Life Care with Ambulatory Geriatric
Patients," the consistently low percentage of adults with
formal directives reflects, in large measure, "the extent
to which advance care planning has been marginalized in
clinical and legal practice and estate planning."
The author states that this bill is an effort to educate
Californians about advance health care directives and to
help individuals carry out their end-of-life choices.
CHANGES TO EXISTING LAW
1. Existing law establishes the Advance Health Care
Directive Registry in the office of the Secretary of
State and specifies the information that may be received
and released by the Registry to a health care provider,
a public guardian, or any person authorized by the
registrant. [Probate Code Sec. 4800.]
This bill would add, to the information contained in the
registry, the registrant's executed advance health care
directive.
This bill would require the Secretary of State to
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receive and release the enumerated information provided
by the registrant and to issue a Registry identification
card indicating that the advance health care directive
or information about the directive has been deposited
with the Registry.
This bill would require the Secretary of State, at the
request of the legal representative of the registrant,
to transmit information concerning the written advance
health care directive to the registry system of another
jurisdiction.
2. Existing law requires a general acute care hospital,
within 24 hours of arrival of a patient who is
unconscious or otherwise incapable of communication in
the hospital's emergency department, to make reasonable
efforts to contact the patient's agent, surrogate, or
family member with authority to make health care
decisions for the patient. Existing law deems the
hospital to have discharged this duty if it examines the
patient's personal effects, if any, or reviews any
reports, verbal or written, made by emergency health
technicians or the police, to identify the name of an
agent, surrogate, or family member, or attempts to
contact any agent, surrogate or family member the
hospital reasonably believes has authority to make
health care decisions for the patient. [Probate Code
Sec. 4716.]
This bill would also require a hospital to contact the
Secretary of State to inquire if the patient has
registered an advance health care directive with the
Registry, when the hospital finds evidence of the
patient's Registry identification card.
COMMENT
1. Need for the bill
According to the author:
Advance health care directives are a relatively new
idea at the state level. North Carolina is the only
state that allows residents to pay a fee and
voluntarily file their advance health care directives
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and organ donation wishes with the Secretary of
State's computer registry. Minnesota, South Dakota,
Hawaii and Oklahoma have laws that allow individuals
with an advance health care directive to have a symbol
affixed to their driver's license. Hawaii, Nevada and
Rhode Island permit patients to use do-not-resuscitate
bracelets and medallions. Arizona lawmakers recently
introduced legislation to make Arizona one of the
first states in the country to have a free computer
registry for residents to file end-of-life directions
for medical treatment?
Even when someone has prepared an advance health care
directive, if it cannot be found when it is needed
most, family members are asked to make difficult
decisions about the care of their loved one. AB 2445
will help individuals with their end-of-life choices?
Most important, it will help ensure that family
members and health care providers have access to an
individual's health care choices in the event the
patient cannot speak for him or herself.
2. Secretary of State to issue identification cards;
hospital's duty to call Registry
This bill would require the Secretary of State to issue
identification cards to persons who have executed and
registered information about their advance health care
directive, for a fee that would be based on the actual
cost to the Secretary of establishing and maintaining
the Registry and issuing the cards.
This is probably the most practical and useful aspect of
this bill, even though at present there are only 500
persons out of potential millions that may register
their directive with the Secretary of State.
The identification card would be useful to health care
providers, especially in emergency rooms. If found on
an unconscious patient, the card would at least alert
the emergency room personnel that the patient has a
directive that, while it may or may not address a
particular emergency situation, would give the hospital
some information.
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Under this bill, the hospital would be required to
contact the Secretary of State directly or indirectly,
by voicemail or by fax, if the hospital finds evidence
of the card on the patient or from the patient's family
or agent. This duty is in addition to the hospital's
duty under existing law to examine the personal effects
of the patient as well as any verbal or written report
made by emergency technicians, and the duty to contact
or attempt to contact any agent, surrogate, or family
member with authority to make health care decisions on
behalf of the patient. However, the Secretary of State,
under this bill, would not have to respond to this
inquiry within any period of time.
It is not clear what effect this provision would have on
the liability of a hospital that proceeds with any
life-saving efforts when it does not receive a timely
response after having made an inquiry with the Secretary
of State, or what liability the Secretary of State would
have if the information about the health care directive
is forwarded to the hospital too late, and the hospital
has taken steps contrary to the directive.
SHOULD SOME RESPONSE TIME BE INCORPORATED INTO THIS
SCENARIO TO AVOID UNINTENDED CONSEQUENCES AND TO CLARIFY
RESPONSIBILITY AS BETWEEN THE HEALTH CARE PROVIDER AND
THE SECRETARY OF STATE?
Under this bill, a hospital would be liable if it called
the Secretary of State or faxed an inquiry and then did
nothing else to contact any other person under Probate
Code Section 4716.
Unless these issues are resolved, the Secretary of State
may find that it would cost much more than the $100,000
estimated by the Assembly Committee on Appropriations to
implement this bill, since the potential liability
cannot be estimated.
SHOULD THESE SCENARIOS BE CONSIDERED BEFORE MOVING
FORWARD WITH THIS BILL?
OR SHOULD THE BILL SIMPLY DELETE THE TIE-IN TO THE
HOSPITAL'S DUTY UNDER PROBATE CODE SECTION 4716, AND
INSTEAD IMPROVE EFFORTS TO EDUCATE HOSPITALS AND
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ENCOURAGE THEM TO CALL THE REGISTRY VOLUNTARILY?
3. Privacy problems: information in Secretary of State's
Registry
Since passage of AB 891, the Legislature has enacted
stricter rules for the use and/or release of
confidential personal information such as social
security numbers, addresses and phone numbers, and other
personal identifiers. Additionally, the federal
regulations implementing HIPAA (Health Information
Portability and Accountability Act) were finally put
into place, although to date the state is still not
finished screening its statutes to see if they are HIPAA
compliant or HIPAA preempted.
The current statute allows for the registration of a
person's name, social security or driver's license
number, address, date and place of birth, an intended
place of deposit of a written advance health care
directive, and the name and telephone number of an
agent. This bill would add to this information the
actual advance health care directive of a registrant.
The degree to which the Secretary of State must protect
the privacy of this information, considering it is
mandated to release the information to "any health care
provider, the public guardian, or other person
authorized by the registrant," is uncertain.
Potentially, SB 2445 could make sensitive private
information subject to public access.
a. The Public Records Act would make all of this
information public records, unless specifically
exempted from the PRA
The Public Records Act (Government Code Sec. 6250 et
seq.) opens a public agency's records, except those
exempted by the Act, to public inspection and
copying. The Confidentiality of Medical Information
Act (CMIA) (Civil Code Sec. 56 et seq.) protects from
disclosure medical and related personal information
in the possession or control of a health care
provider.
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While the Public Records Act (PRA) would exempt from
disclosure medical information and other personal
information if it is otherwise designated
confidential and non-disclosable by other law, the
information that is and will be contained in the
Secretary of State's Advance Health Care Directive
Registry may not be exempt under the PRA. This is
because (1) the advance health care directive is not
in the possession and control of the health care
provider as required by the CMIA, and (2) the rest of
the information provided to the Registry has not been
exempted as a group from the PRA.
SHOULD THIS INFORMATION BE EXEMPT FROM THE PUBLIC
RECORDS ACT?
b. Secretary of State procedure does not require
reason for needing information
Current Probate Code Sec. 4801 directs the Secretary
of State to "establish procedures to verify the
identities of health care providers, the public
guardian, and other authorized persons requesting
information pursuant to Section 4800."
While the procedures may be helpful in terms of
ensuring the person requesting the information is
indeed that person or represents the health care
provider or public guardian, this section lacks the
requirement that the request for information be
accompanied by the reason for needing the
information. Unless this advance health care
directive information is exempted as a group from the
Public Records Act, the Secretary of State could be
obligated to release the information to a requestor
who may not have any current need for the advance
health care directive at all but who may simply be
"fishing" for information.
SHOULD THE REQUESTOR OF INFORMATION STATE THE REASON
WHY HE OR SHE OR IT NEEDS THE ADVANCE HEALTH CARE
DIRECTIVE OR INFORMATION ABOUT IT?
Further, it is not clear why the social security
number should be disclosed, simply for the asking, to
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any requestor, if there are other identifiers that
may be used to confirm the identity of the
registrant.
SHOULD SOCIAL SECURITY NUMBERS BE WITHHELD BY THE
SECRETARY OF STATE?
Finally, this bill may be a good opportunity to make
Section 4800 internally consistent by using the
phrase "legal representative" in place of "other
person authorized by the registrant," which is
distinct from the "agent" of a person who executes an
advance health care directive, as used in other
relevant sections of the Probate Code.
SHOULD THIS TECHNICAL AMENDMENT BE ADOPTED?
The Secretary of State is authorized under existing
Probate Code Section 4800(d) to charge a fee to the
registrant, in an amount that in the aggregate does
not exceed the actual cost of establishing and
maintaining the registry. This bill would allow the
Secretary to also cover the cost of issuing the
identification cards that this bill would authorize.
It is important to note that, even though the
Registry is set up to be self-supporting, an
excessive registration fee will probably discourage
registration. Thus, it may be important to set the
fee at a low level initially until there are
sufficient registrants to make the Registry
self-supporting.
4. Bill would delete a currently required advisement by
Secretary of State
This bill would delete from current Probate Code Sec.
4802 the requirement that the Secretary of State
establish procedures to advise a registrant that "a
health care provider may not honor a written advance
health care directive until it receives a copy from the
registrant."
This advisement was carefully considered by the
California Law Revision Commission when it recommended
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passage of AB 891. Nothing in this bill changes the
current state of the law regarding a health care
provider's obligation to honor or not honor a written
advance health care directive.
In fact, it would be a disservice to all who execute
advance health care directives and register with the
Secretary of State not to tell them that a health care
provider may not honor a directive, because under
certain circumstances the provider may not do so (for
example, if the provider believed in good faith that the
person who executed the directive was not competent).
SHOULD THIS DELETED PROVISION BE RETURNED TO PROBATE
CODE SEC. 4802?
5. Other alternative
The stated goal of this bill is to increase efforts to
educate the public about the benefits of executing an
advance health care directive to make clear to family
and medical personnel what end-of-life choices one has
made. It is a laudable goal, supported by the report of
the Assembly Select Committee on Palliative Care,
"Improving Care at Life's End."
However, considering the problems with the bill as heard
today in Committee, it may be better to direct the
Secretary of State (or the Department of Health
Services) to engage in a campaign to disseminate
information about advance health care directives and to
encourage hospitals and other health care providers to
check the Registry. Concurrently, the bill could direct
the Secretary of State to consider the privacy issues
raised in this analysis as it establishes procedures for
the receipt of information from a larger population who
may wish to register, and the careful and limited
release of that information.
6. Technical amendments
On page 3, line 19, strike out "shall" and insert:may
(This is in keeping with Legislative Counsel statutory
language change from "shall" to "may" where appropriate,
and also restores the current language of the statute.)
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Support: American Lung Association; California Medical
Association; Compassion in Dying Federation
(Compassion); Gray Panthers; End of Life Choices,
Greater Bakersfield, Central Coast, Central Valley,
Orange County, Sacramento Valley, San Diego Chapters
Opposition: None Known
HISTORY
Source: Author
Related Pending Legislation: None Known
Prior Legislation: AB 891 (Alquist, Ch. 658, Stats. 1999)
See Background
Prior Vote:Asm. Health (Ayes 14, Noes 0)
Asm. Appr. (Ayes 16, Noes 5)
Asm. Flr. (Ayes 52, Noes 27)
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