BILL ANALYSIS Ó
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Date of Hearing: September 4, 2015
ASSEMBLY COMMITTEE ON FINANCE
Shirley Weber, Chair
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(Eggman) - As Amended September 3, 2015
SUBJECT: End of life.
SUMMARY: Enacts the End of Life Option Act allowing an adult
diagnosed with a terminal disease, and with the capacity to make
medical decisions, to receive a prescription for an aid-in-dying
drug to end his or her life in a humane and dignified manner.
Specifically, this bill (among many additional provisions):
1)Defines a qualified individual as an adult who has the
capacity to make medical decisions, is a resident of
California, and has satisfied all of the requirements of these
provisions in order to obtain a prescription for a drug to end
his or her life.
2)Requires an individual requesting an aid-in-dying drug to have
done so voluntarily.
3)Allows a request for a prescription for an aid-in-dying drug
to be made only by the individual diagnosed with the terminal
disease, not by others on behalf of the individual, including
prohibiting requests through a power of attorney, an advance
health care directive, a conservator, health care agent,
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surrogate, or any other legally recognized health care
decision maker.
4)Specifies that a person will not be qualified to obtain an
aid-in-dying drug solely because of age or disability.
5)Requires an individual requesting a prescription for an
aid-in-dying drug to submit two oral requests, a minimum of 15
days apart, and a written request, and for the attending
physician to personally receive all three requests. Requires
written requests to be signed and dated by the individual in
the presence of two witnesses who must attest to the best of
their knowledge and belief that the individual is personally
known to them or has provided proof of identity, is of sound
mind, and not under duress, fraud, or undue influence.
6)Prohibits the attending physician, consulting physician, or
the mental health specialist of the requesting individual from
being a witness on the written request.
7)Allows only one of the witnesses to be related to the
individual by blood, marriage, registered domestic
partnership, or adoption or be entitled to a portion of the
individual's estate upon death, and only one of the witnesses
to own, operate, or be employed at a health care facility
where the individual is receiving medical treatment or
resides.
8)Specifies that at any time an individual may withdraw or
rescind his or her request for an aid-in-dying drug, or decide
not to ingest an aid-in-dying drug, without regard to their
mental state.
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9)Prohibits an attending physician from writing a prescription
for an aid-in-dying drug without first personally offering the
individual an opportunity to withdraw or rescind the request.
EXISTING LAW: Requires a health care provider, who makes a
diagnosis that a patient has a terminal illness, to notify the
patient of his or her right to comprehensive information, as
specified, and counseling regarding legal end-of-life options.
Requires a health care provider who does not wish to provide the
specified information to refer or transfer a patient to another
health care provider who will provide this information.
FISCAL EFFECT:
Department of Health Care Services
Potential minor costs and savings in Medi-Cal based on the
Medi-Cal program choosing to cover this end-of-life option
(General Fund (GF)).
Department of Public Health
The Department of Public Health (DPH) would incur one-time GF
costs of $90,000 for information technology services, and
ongoing GF costs in the range of $250,000.
DPH anticipates that a secure drive with password protection
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would be needed to store the confidential data collected
pursuant to this bill, and would require an SQL database to
perform data collection and storage. DPH states that a database
could be developed with one-time development costs of
approximately $88,000, and ongoing yearly maintenance by
Information Technology Services Division (ITSD) of approximately
$10,000 per year, as shown in the chart below.
----------------------------------------------------------------
|Database Development Task |Hours |Cost |
|-----------------------------------------+---------+------------|
|Application Development | | |
|-----------------------------------------+---------+------------|
| Requirements Specifications |267 |$16,000 |
|-----------------------------------------+---------+------------|
| Design/Test Plan |133 |$8,000 |
|-----------------------------------------+---------+------------|
| System Development / Code & |800 |$48,000 |
| Test | | |
|-----------------------------------------+---------+------------|
| Acceptance Testing/User |133 |$8,000 |
| Training | | |
|-----------------------------------------+---------+------------|
| Initial Internet/SQL DBA |133 |$8,000 |
| setup | | |
|-----------------------------------------+---------+------------|
| | | |
|-----------------------------------------+---------+------------|
|Total One-Time Cost |1466 |$88,000 |
|-----------------------------------------+---------+------------|
|Ongoing yearly maintenance ($845 x 12) |14/mo |$10,140 |
----------------------------------------------------------------
Additionally, once the database is established, DPH estimates
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that two full-time positions would be required to perform
confidential program and reporting duties outlined in this bill,
with duties including:
Collect data, enter reports received, collect forms,
track program utilization and associated deaths;
Follow-up with providers that submit incomplete reports;
Perform data analysis, cross-check decedent deaths with
list of prescribed participants, and draft annual reports;
Prepare the annual report mandated by the bill;
Maintain program information on the public website, and
respond to inquiries regarding program policy; and
Update website as needed, and make reporting forms
available for download online.
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Summary of Total Cost to DPH
------------------------------------------------------------
| Total Budget Year Cost |Total Cost Budget Year + 1 |
|--------------------------------+---------------------------|
| $323,087 |$245,227 |
| | |
| | |
| | |
------------------------------------------------------------
Department of Managed Health Care
Due to the sensitive and controversial nature of aid-in-dying
medication, the Department of Managed Health Care (DMHC)
anticipates a high level of public interest, which will result
in Public Records Act (PRA) or Information Practices Act (IPA)
requests during the first three years. The Office of Legal
Services (OLS) anticipates PRA/IPA requests regarding which
health plans that cover aid-in-dying medications and under what
terms the medications are covered, as well as information on
relevant policy decisions, enforcement policies, and consumer
grievances. OLS estimates that these tasks will have no cost in
the current fiscal year, $276,000 (Managed Care Fund (MCF)) and
2.0 positions in the 2015-16 fiscal year, and $244,000 MCF and
2.0 positions each in the 2016-17 and 2017-18 fiscal years. OLS
does not anticipate ongoing costs after the 2017-18 fiscal year.
The Help Center, Office of Administrative Services, Office of
Technology and Innovation, Office of Enforcement, Office of Plan
Licensing, Division of Plan Surveys, and Office of Financial
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Review anticipate absorbable workload that will have no
significant fiscal impact on those programs.
Medical Board of California
Minor costs to the Medical Board to update several of the forms
required by this bill as deemed necessary (Contingent Fund of
the Medical Board of California).
Board of Pharmacy
Minor costs to the Board of Pharmacy. The Board would not need
to amend or adopt any regulations. The Board estimates that any
additional enforcement actions due to this bill would result in
minor costs (Pharmacy Fund).
COMMENTS:
PURPOSE OF THIS BILL. According to the author, this bill would
allow an adult in California with a terminal disease who has the
capacity to make medical decisions, and who has been given a
prognosis of less than six months to live, to make end of life
decisions. The author states by giving these patients the legal
right to ask for and receive an aid-in-dying prescription from
his/her physician, this bill would provide one more option to
the number of options one has when faced with the end of their
life. The author notes this bill includes strong provisions to
safeguard patients from coercion and to allow voluntary
participation by physicians, pharmacists, and health care
facilities, and that this medical practice is already recognized
in five other states. The author contends there is substantial
evidence from those states that prove this law can be used
safely and effectively.
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BACKGROUND. Five states have authorized what is referred to as
Death with Dignity, Aid-in-Dying or Assisted Suicide. Oregon
and Washington enacted their legislation through voter
initiatives that took effect in 1997 and 2009, respectively.
Vermont enacted legislation in 2013. In Montana and New Mexico,
the courts have effectively authorized doctors to engage in the
practice. Belgium, the Netherlands, Luxembourg, and Switzerland
all allow for physician aid-in-dying, and next year Canada will
implement the practice as well.
COST AND COVERAGE. This bill does not mandate coverage of
the aid-in-dying medication. Individual insurers will
determine whether or not to participate. However, federal
funding cannot be used for services rendered under the End
of Life Options Act. The Oregon Medicaid program, which is
paid for in part with federal funds, ensures that these
costs are covered only with state funds. According to
Compassion & Choices (C&C), the current approximate cost of
the medication in Oregon is $1,500 per prescription.
California's Medi-Cal program could choose to cover these
drugs for this purpose, using state-only funds. Staff notes
if Medi-Cal were to choose not to cover this but other
health insurers did, it could create unequal access to this
end-of-life option based on economic status.
SUPPORT. C&C supports this bill, stating it will improve the
quality of end-of-life care for terminally ill Californians and
their families, while protecting physicians who care for them.
C&C writes they want people to be free to choose how they live -
and when the time comes, how they die. They contend that all
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Californians should have the option, in consultation with their
families and doctors, to make the end-of-life decisions that are
right for them in the final stages of a terminal illness.
Numerous other organizations support this bill because they
value autonomy in making fundamental life decisions. These
organizations also applaud the many patient protections in the
bill, including provisions which make it a felony to coerce
someone to request an aid-in-dying prescription.
OPPOSITION. There is a broad coalition of opposition to this
bill, including, Disability Rights Education & Defense Fund
(DREDF), Silicon Valley Independent Living Center, and The ARC
California, who all state physician-assisted suicide is bad for
Californians, particularly those with low incomes who may lack
adequate access to health care, including mental health
services. These organizations contend this bill will have a
devastating impact on the treatment of terminally ill and
disabled patients, stating that if assisted suicide is made
legal it quickly becomes just another treatment option, always
being the cheapest, and therefore, eventually the treatment of
choice.
The Association of Northern California Oncologists states they
oppose this bill for several specific reasons-first, they note
it is contrary to a physician's oath and primary responsibility
to do no harm. Secondly, legalizing physician-assisted suicide
undermines the valuable and overwhelmingly successful work of
their hospice and pain and palliative care colleagues. Finally,
they state the legislation is based on a common misunderstanding
that it is easy to determine when a patient is terminal, noting
that despite a physician's prognosis, many patients outlive
terminal diagnoses.
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Opponents to this bill also make the following arguments:
This option could be used as a form of elder abuse by an
heir or abusive caregiver who stands to gain economically
or otherwise by the hastened death of the patient,
particularly in the absence of a required witness to the
death.
Coercion and inappropriate approval of this option could
occur, and has in Oregon (according to the opposition), by
way of: "doctor shopping," ignoring histories of
depression, psychiatric disabilities, dementia or other
developmental disabilities, and economic pressures of the
patient, relatives or caregivers.
Legalizing suicide, even for a narrow set of
circumstances, can have a contagious effect, sending the
message to the general public that suicide is justified and
appropriate in certain situations, thereby leading to
increasing rates of suicide in the general population.
Opponents cite evidence of a substantial increase in the
suicide rate in Oregon in the general population since
passage of the assisted suicide law in that state.
Opponents state that the data from Oregon is woefully
inadequate and do not prove the safety of this law in that
state. Specifically, the Disability Rights Education and
Defense Fund states that available data is quite minimal
and there is no oversight, investigation of abuse,
enforcement, penalties for non-compliance, nor monitoring.
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REGISTERED SUPPORT / OPPOSITION:
Support
AIDS Healthcare Foundation
The American Nurses Association
California Church IMPACT
California Psychological Association
Cardinal Point at Mariner Square Residents' Association
The City of Cathedral City
The City of Santa Barbara
The City of Santa Cruz
The Community Church of California City
Compassion & Choices CA
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County of Santa Cruz Board of Supervisors
Death with Dignity National Center
Democratic Women of Monterey County
Democratic Women of Santa Barbra
Equality California
Five Counties Council Labor Council
Full Circle Living and Dying Collective, Western Nevada County,
CA
GLMA Health Professionals Advancing LGBT Equality
Gray Panthers
The Humboldt and Del Notre Counties Central Labor Commission
The Libertarian Party of Orange County
Los Angeles LGBT Center
The Mar Vista Community Council
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The National Association of Social Workers, California Chapter
(NASW-CA)
The National Center for Lesbian Rights
The National Council of Jewish Women
People of Faith for Justice
Potrero Hill Democratic Club
Progressive Christians Uniting
San Benito County Democratic Central Committee
San Francisco AIDS Foundation
San Mateo County Democracy for America
The San Mateo County Democratic Party
Santa Barbara County Board of Supervisors
Sacramento Central Labor Council AFL-CIO
Seal Beach Leisure World Democratic Club
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The Sierra County Democratic Central Committee
Shasta County Citizens for Democracy
The South Orange County Democratic Club
The Tehachapi Mountain Democratic Club
The Unitarian Universalist Church of the Desert
The Unitarian Universalist Church of the Verdugo Hills
Ventura County Board of Supervisors
Visalia Democratic Club
West Hollywood United Church of Christ
Opposition
Alliance of Catholic Health Care
American Disabled For Attendant Programs
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Association of Northern California Oncologists
Autistic Self Advocacy Network
California Disability Alliance
California Foundation for Independent Living Centers
Disability Rights California
Disability Rights Education & Defense Fund
Not Dead Yet
Silicon Valley Independent Living Center
United African American Ministerial Action Council
Several Physicians and Other Individuals
Analysis Prepared by:Andrea Margolis / FINANCE /916-319-2099
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