BILL ANALYSIS Ó
AB 15 X2
Page 1
ASSEMBLY THIRD READING
AB 15
X2 (Eggman, et al.)
As Amended September 3, 2015
Majority vote
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|Committee |Votes|Ayes |Noes |
| | | | |
| | | | |
| | | | |
|----------------+-----+----------------------+--------------------|
|Public Health |10-3 |Bonta, Maienschein, |Mayes, Santiago, |
| | |Baker, Bonilla, |Steinorth |
| | |Campos, | |
| | | | |
| | | | |
| | |Eduardo Garcia, | |
| | |Levine, | |
| | | | |
| | | | |
| | |Mark Stone, Thurmond, | |
| | |Wood | |
| | | | |
|----------------+-----+----------------------+--------------------|
|Finance |5-3 |Weber, Bloom, |Melendez, Bigelow, |
| | |Jones-Sawyer, |Obernolte |
| | |McCarty, Ting | |
| | | | |
| | | | |
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AB 15 X2
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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:
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)Defines various other terms for purposes of these provisions,
including defining an adult as an individual 18 years of age
or older, an aid-in-dying drug as a drug determined and
prescribed by a physician for a qualified individual, and an
attending physician as the physician who has primary
responsibility for the health care of an individual and
treatment of the individual's terminal disease. Defines
terminal disease as an incurable and irreversible disease that
has been medically confirmed and will, within reasonable
medical judgment, result in death within six months.
3)Requires an individual requesting an aid-in-dying drug to have
done so voluntarily.
4)Specifies that the individual must be a resident of California
with the ability to establish residency through possession of
a California driver's license or other identification issued
by the State of California; registration to vote in
California; or, filing of a California tax return for the most
recent tax year.
5)Allows a request for a prescription for an aid-in-dying drug
to be made only by the individual diagnosed with the terminal
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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,
surrogate, or any other legally recognized health care
decision maker.
6)Specifies that a person will not be qualified to obtain an
aid-in-dying drug solely because of age or disability.
7)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.
8)Prohibits the attending physician, consulting physician, or
the mental health specialist of the requesting individual from
being a witness on the written request.
9)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.
10)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
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mental state.
11)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,
and, requires the attending physician before prescribing to do
all of the following:
a) Make an initial determination whether the requesting
adult has the capacity to make medical decisions, and if
there are indications of a mental disorder, to refer the
individual for a mental health specialist assessment. If a
mental health assessment referral is made, no aid-in-dying
drugs will be prescribed until the mental health specialist
determines that the individual has the capacity to make
medical decisions and is not suffering from impaired
judgment due to a mental disorder;
b) Determine whether the requesting adult has a terminal
disease;
c) Determine whether the requesting adult has voluntarily
made the request for an aid-in-dying drug and is a
qualified individual;
d) Confirm that the individual is making an informed
decision by discussing all of the following with them:
i) Their medical diagnosis and prognosis;
ii)The potential risks associated with ingesting the
requested aid-in-dying drug;
iii)The possibility that they may choose to obtain the
aid-in-dying drug but not take it; and,
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iv)Feasible alternatives or additional treatment options
including, but not limited to, comfort care, hospice
care, palliative care, and pain control.
e) Refer the individual to a consulting physician for
medical confirmation of the diagnosis and prognosis, and
for a determination that the individual has the capacity to
make medical decisions;
f) Confirm that the individual's request does not arise
from coercion or undue influence by another person by
privately discussing, unless an interpreter is needed,
whether or not the individual is feeling coerced or unduly
influenced by another person;
g) Counsel the individual about the importance of all of
the following:
i) Having another person present when they ingest the
aid-in-dying drug;
ii)Not ingesting the aid-in-dying drug in a public place;
iii)Notifying the next of kin of their request for an
aid-in-dying drug. An individual's inability or refusal
to notify their next of kin does not constitute a reason
to deny their request for an aid-in-dying drug;
iv)Participating in a hospice program; and,
v) Maintaining the aid-in-dying drug in a safe and
secure location until they will ingest it.
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h) Inform the individual that they may withdraw or rescind
the request for an aid-in-dying drug at any time and in any
manner, and offer the individual an opportunity to withdraw
or rescind the request for an aid-in dying drug before
prescribing the aid-in-dying drug;
i) Verify, immediately prior to writing the prescription
for the aid-in-dying drug, that the individual is making an
informed decision;
j) Confirm that all the requirements for requesting an
aid-in-dying drug have been met; and,
aa)Fulfill all medical record documentation requirements,
including completing the End of Life Option Act Checklist
and Compliance Form and placing it in the individual's
medical record.
bb)Provide the individual with a final attestation form and
instruct them to fill it out and sign it 48 hours prior to
ingesting the aid-in-dying drug. The form attests, among
other things, that the individual has been fully informed
of their diagnosis and prognosis, counseled regarding
feasible alternatives, including hospice and palliative
care, and that the individual understands they may choose
not to ingest the drug and is under no obligation to ingest
the drug. Requires the form to be delivered by the
individual's health care provider, family member, or other
representative to the attending physician to be included in
the patient's medical record.
12)Once all of the requirements have been met, allows the
attending physician to deliver the aid-in-dying drug in any of
the following ways:
a) Dispensing the aid-in-dying drug directly, including
AB 15 X2
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ancillary medication intended to minimize the qualified
individual's discomfort, if the attending physician is
authorized to dispense medicine under California law, has a
current United States Drug Enforcement Administration
certificate, and complies with any applicable
administrative rule or regulation;
b) With the individual's written consent, contacting a
pharmacist to inform them of the prescriptions, and
delivering the written prescriptions personally, by mail,
or electronically to the pharmacist, who may dispense the
drug to the individual, the attending physician, or a
person expressly designated by the individual and with the
designation delivered to the pharmacist in writing or
verbally; and,
c) Delivery of the dispensed drug to the qualified
individual, the attending physician, or a person expressly
designated by the individual may be made by personal
delivery, or, with a signature required on delivery, by the
United Parcel Service, United States Postal Service,
Federal Express, or by messenger service.
13)Prior to the individual obtaining an aid-in-dying
prescription from the attending physician, requires the
consulting physician to:
a) Examine the individual and their medical records;
b) Confirm in writing the attending physician's diagnosis
and prognosis;
c) Determine that the individual has the capacity to make
medical decisions, is acting voluntarily, and has made an
informed decision;
d) Refer the individual for a mental health specialist
assessment, if there are indications of a mental disorder;
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and,
e) Document all of the above in the individual's medical
record.
14)If the attending or consulting physician refers the
individual to a mental health specialist, requires the mental
health specialist to:
a) Examine the qualified individual and their medical
records;
b) Determine that the individual has the mental capacity to
make medical decisions, act voluntarily, and make an
informed decision;
c) Determine that the individual is not suffering from
impaired judgment due to a mental disorder; and,
d) Document all of the above in the individual's medical
record.
15)Requires all of the following to be documented in the
individual's medical record:
a) All oral requests for aid-in-dying drugs;
b) All written requests for aid-in-dying drugs;
c) Both the attending physician's and consulting
physician's diagnosis and prognosis, and the determination
that a qualified individual has the capacity to make
medical decisions, is acting voluntarily, and has made an
informed decision, or that the attending or consulting
physician has determined that the individual is not a
qualified individual;
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d) A report on the outcome and determinations made during a
mental health specialist's assessment, if performed;
e) The attending physician's offer to the qualified
individual to withdraw or rescind his or her request at the
time of the individual's second oral request; and,
f) A note by the attending physician indicating that all
requirements have been met and indicating the steps taken
to carry out the request, including a notation of the
aid-in-dying drug prescribed.
16)Requires the attending physician, within 30 calendar days of
writing a prescription for an aid-in-dying drug, to submit a
copy of the patient's written request, the attending physician
compliance form, and the consulting physician compliance form
to the State Department of Public Health (DPH).
17)Requires the attending physician, within 30 calendar days
following the qualified individual's death from ingesting the
aid-in-dying drug, or any other cause, to submit the attending
physician follow-up form to DPH.
18)Outlines the requirements of the witnessed form an individual
must submit to request an aid-in-dying drug. Requires the
language of the request to be written in the same translated
language as any conversations, consultations, or interpreted
conversations between a patient and his or her attending or
consulting physicians. Prohibits an interpreter from being
related to the individual requesting the aid-in-dying drug and
requires interpreters to meet certain professional association
standards.
19)Makes a provision in a contract, will, or other agreement
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executed on or after January 1, 2016, whether written or oral,
to the extent the provision would affect whether a person may
make, withdraw, or rescind a request for an aid-in-dying drug,
invalid.
20)Prohibits the sale, procurement, or issuance of a life,
health, or accident insurance or annuity policy; health care
service plan contract; or, health benefit plan, or the rate
charged for a policy or plan contract from being conditioned
upon or affected by a person making, withdrawing, or
rescinding a request for an aid-in-dying drug. Also provides
that an obligation owing under any contract executed on or
after January 1, 2016, may not be conditioned or affected by a
qualified individual making, withdrawing, or rescinding a
request for an aid-in-dying drug.
21)Provides that death resulting from the self-administration of
an aid-in-dying drug is not suicide, and therefore health and
insurance coverage shall not be exempted on that basis.
22)Provides that a qualified individual's act of
self-administering an aid-in-dying drug has no effect upon a
life, health, or accident insurance or annuity policy other
than that of a natural death from the underlying disease.
23)Prohibits an insurance carrier from providing any information
in communications to an individual about the availability of
an aid-in-dying drug unless requested by the individual or
their attending physician at the behest of the individual.
Clarifies that any communication must not include both a
denial of treatment and information about the availability of
aid-in-dying drug coverage.
24)Provides that a person will not be subject to civil or
AB 15 X2
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criminal liability solely because the person was present when
the qualified individual self-administered the prescribed
aid-in-dying drug, and that a person may, without civil or
criminal liability assist the qualified individual by
preparing the aid-in-dying drug, but not assist the individual
in ingesting the aid-in-dying drug.
25)Prohibits a health care provider or professional organization
or association from subjecting an individual to censure,
discipline, suspension, loss of license, loss of privileges,
loss of membership, or other penalty for participating in good
faith compliance with these provisions, or for refusing to
participate.
26)Prohibits a health care provider from being be subject to
civil, criminal, administrative, disciplinary, employment,
credentialing, professional discipline, contractual liability,
or medical staff action, sanction, or penalty or other
liability for participating in these provisions.
27)Specifies that the immunities and prohibitions on sanction of
a health care provider are solely reserved for actions of a
health care provider taken pursuant to these provisions, and
clarifies a health care provider may be sanctioned by their
licensing board or agency for conduct and actions constituting
unprofessional conduct, including failure to comply in good
faith with these provisions.
28)Specifies that a request by a qualified individual to an
attending physician to provide an aid-in-dying drug in good
faith compliance with these provisions does not constitute the
sole basis for the appointment of a guardian or conservator,
and actions taken in compliance with these provisions do not
provide the basis for a claim of neglect or elder abuse.
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29)Provides that participation in activities authorized by this
bill must be voluntary, and further clarifies that an
individual is not subject to any type of sanction for refusing
to inform a patient regarding his or her rights under these
provisions and not referring an individual to a physician who
does participate in activities authorized by this bill.
30)Allows a health care provider, with advance notice, to
prohibit its employees, independent contractors, or other
persons or entities, including other health care providers,
from participating in these provisions while on premises owned
or under the management or control of the prohibiting health
care provider.
31)Allows, if a health care provider has given notice, and an
individual or entity violates the prohibition to participate
in these provisions, the prohibiting provider to take action
against an individual or entity, including, but not limited
to, loss of privileges or membership, suspension, loss of
employment, or termination of any lease or other contract
between the prohibiting health care provider and the
individual or entity that violates the policy.
32)Specifies that nothing in these provisions prevent a health
care provider from providing an individual with services that
do not constitute participation in these provisions, that a
health care provider may not be sanctioned for making a
determination that an individual has a terminal disease and
informing them of their medical prognosis, or for providing
information about the End of Life Option Act to a patient upon
the request of the individual.
33)Makes knowingly altering or forging a request for an
aid-in-dying drug to end an individual's life without their
AB 15 X2
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authorization, or concealing or destroying a withdrawal or
rescission of a request, or administering an aid-in-dying drug
to an individual without his or her knowledge or consent,
punishable as a felony.
34)Prohibits the attending physician, consulting physician, or
mental health specialist from being related to the qualified
individual by blood, marriage, registered domestic
partnership, or adoption, or be entitled to a portion of the
individual's estate upon death.
35)Makes coercing or exerting undue influence on an individual
to request or ingest an aid-in-dying drug punishable as a
felony.
36)Specifies that nothing in these provisions may be construed
to authorize a physician or any other person to end an
individual's life by lethal injection, mercy killing, or
active euthanasia.
37)Specifies that nothing in these provisions may be construed
to limit civil liability.
38)Requires DPH to collect and review the information submitted
by the attending physician on the patient's written request,
the attending physician's compliance form, and the consulting
physician's compliance form; requires the information to be
confidential and collected in a manner that protects the
privacy of the patient, the patient's family, and any medical
provider or pharmacist involved with the patient under these
provisions.
39)Requires DPH, on or before July 1, 2017, and each year
AB 15 X2
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thereafter, based on the information collected on the
attending physician follow-up form in the previous year, and
DPH's access to vital statistics, to compile a report which
includes, but is not limited to all of the following:
a) The number of people for whom an aid-in-dying
prescription was written;
b) The number of known individuals who died each year for
whom aid-in-dying prescriptions were written, and the cause
of death of those individuals;
c) For the period commencing January 1, 2016, to and
including the previous year, cumulatively, the total number
of aid-in-dying prescriptions written, the number of people
who died due to use of aid-in-dying drugs, and the number
of those people who died who were enrolled in hospice or
other palliative care programs at the time of death;
d) The number of known deaths in California from using
aid-in-dying drugs per 10,000 deaths in California;
e) The number of physicians who wrote prescriptions for
aid-in-dying drugs;
f) Of the people who died due to using an aid-in-dying
drug, demographic percentages organized by the following
characteristics:
i) Age at death;
ii)Education level;
iii)Race;
AB 15 X2
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iv)Sex;
v) Type of insurance, including whether or not they had
insurance; and,
vi)Underlying illness.
40)Requires DPH to post the report on its Internet Web site.
41)Requires DPH to make the following forms available on its
Internet Web site: the attending physician checklist and
compliance form, the consulting physician compliance form, and
the attending physician follow-up form. The forms identify
each and every requirement that must be fulfilled by a health
care provider to be in compliance with the End of Life Option
Act.
42)Requires a person with any unused aid-in-dying drugs after
the death of a patient, to personally deliver the unused drugs
to the nearest qualified disposal facility, or if none is
available, to dispose of the drugs in accordance with
guidelines developed by the California State Board of Pharmacy
(BOF) or a federal Drug Enforcement Administration approved
take back program.
43)Provides that any governmental entity that incurs costs
resulting from an individual terminating his or her life under
these provisions in a public place will have a claim against
the estate of the individual to recover those costs and
reasonable attorney fees related to enforcing the claim.
44)Allows the Medical Board of California to develop, revise,
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and update an attending physician checklist and compliance
form, a consulting physician compliance form, and an attending
physician follow-up form, based on those already provided by
DPH. Requires DPH, upon completion of the new forms, to
publish them on its Internet Web site.
45)Specify that these provisions remain in effect only until
January 1, 2026, and as of that date are repealed, unless a
later enacted statute, that is enacted before January 1, 2026,
deletes or extends that date.
46)Makes various findings and declarations, including that any
limitation to public access to personally identifiable patient
data collected pursuant to these provisions is necessary to
protect the privacy rights of the patient and his or her
family, and that the statistical report to be made available
to the public is sufficient to satisfy the public's right to
access.
47)Makes the provisions of this bill severable if any provision
is held invalid.
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 and
counseling regarding legal end-of-life options, and requires the
comprehensive information to include, but not be limited to:
1)Hospice care at home or in a health care setting;
2)A prognosis with and without the continuation of
disease-targeted treatment;
AB 15 X2
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3)The patient's right to refusal of or withdrawal from
life-sustaining treatment;
4)The patient's right to continue to pursue disease-targeted
treatment, with or without concurrent palliative care;
5)The patient's right to comprehensive pain and symptom
management at the end of life; and,
6)The patient's right to give individual health care
instruction, which provides the means by which a patient may
provide written health care instruction, such as an advance
health care directive, and the patient's right to appoint a
legally recognized health care decision maker.
FISCAL EFFECT: According to the Assembly Finance Committee:
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)).
DPH
DPH would incur one-time GF costs of $90,000 for information
technology services, and ongoing GF costs in the range of
$250,000.
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DPH anticipates that a secure drive with password protection
would be needed to store the confidential data collected
pursuant to this bill, and would require a Structured Query
Language (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 of
approximately $10,000 per year, as shown in the chart below.
----------------------------------------------------
|Database Development Task |Hours |Cost |
|-----------------------------------+-------+--------|
|Application Development | | |
|-----------------------------------+-------+--------|
| Requirements |267 | $16,000|
| Specifications | | |
|-----------------------------------+-------+--------|
| Design / Test Plan |133 | $8,000|
|-----------------------------------+-------+--------|
| System Development / |800 | $48,000|
| Code & Test | | |
|-----------------------------------+-------+--------|
| Acceptance Testing / |133 | $8,000|
| User Training | | |
|-----------------------------------+-------+--------|
| Initial Internet / SQL |133 | $8,000|
| DBA setup | | |
|-----------------------------------+-------+--------|
| | | |
|-----------------------------------+-------+--------|
|Total One-Time Cost |1466 | $88,000|
|-----------------------------------+-------+--------|
|Ongoing yearly maintenance ($845 x |14/mo |$10,140 |
|12) | | |
| | | |
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| | | |
| | | |
| | | |
----------------------------------------------------
Additionally, once the database is established, DPH estimates
that two full-time positions would be required to perform
confidential program and reporting duties outlined in this bill,
with duties including:
1)Collect data, enter reports received, collect forms, track
program utilization and associated deaths;
2)Follow-up with providers that submit incomplete reports;
3)Perform data analysis, cross-check decedent deaths with list
of prescribed participants, and draft annual reports;
4)Prepare the annual report mandated by the bill;
5)Maintain program information on the public website, and
respond to inquiries regarding program policy; and
6)Update website as needed, and make reporting forms available
for download online.
Summary of Total Cost to DPH
-----------------------------------------------
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| Total Budget Year Cost | Total Cost Budget |
| | Year + 1 |
|-------------------------+---------------------|
| $323,087 |$245,227 |
| | |
| | |
| | |
-----------------------------------------------
Department of Managed Health Care (DMHC)
Due to the sensitive and controversial nature of aid-in-dying,
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
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
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required by this bill as deemed necessary (Contingent Fund of
the Medical Board of California).
Board of Pharmacy (BOP)
Minor costs to the BOP. The BOP would not need to amend or
adopt any regulations. The BOP 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 that 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. The author concludes, Californians that
are faced with a terminal disease should not have to leave the
state in order to have a peaceful death. In the end, how each
of us spends the end of our lives is a deeply personal decision.
That decision should remain with the individual, as a matter of
personal freedom and liberty, without criminalizing those who
help to honor our wishes and ease our suffering.
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Five states have authorized what is referred to as Death with
Dignity or Aid-in-Dying. 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.
1)Hospice and palliative care. At the center of hospice and
palliative care is the belief that each of us has the right to
die pain-free and with dignity, and that our families will
receive the necessary support to allow us to do so. Hospice
care is available to patients who no longer wish treatment
directed at curing their disease. Patients are usually
referred to hospice by their personal physician, although they
can be referred by their families or even by themselves.
Initially, a physician certifies that the patient has a life
expectancy of six months or less if the disease follows its
normal course. Hospice usually begins within 48 hours after a
referral, and can begin sooner based on the circumstances. A
hospice nurse evaluates what the person and family needs and
develops a plan of care. The plan addresses the entire
family's needs: medical; emotional; psychological; spiritual;
and, support services. The nurse then coordinates the care
with a physician and the full team of health professionals.
Palliative care is patient and family-centered care that
optimizes quality of life by anticipating, preventing, and
treating suffering. Palliative care involves addressing
physical, intellectual, emotional, social, and spiritual needs
and, to facilitate patient autonomy, access to information and
choice. Palliative care is provided and services are
coordinated by an interdisciplinary team - patients, families,
palliative and non-palliative health care providers
collaborate and communicate about care needs. Palliative care
services are available concurrently with or independent of
curative or life-prolonging care.
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2)How we want to die. In February of 2012 the California
HealthCare Foundation published a survey, "Final Chapter:
Californians' Attitudes and Experiences with Death and Dying".
The survey found that most Californians would prefer a
natural death if they became severely ill, rather than have
all possible care provided. We want to die at home rather
than in a hospital or nursing home, and want to talk with our
doctor about our wishes for end-of-life care. However, what
we want isn't what we always get, as the survey numbers
illustrate:
a) Seventy percent of Californians would prefer to die at
home; however of deaths in 2009, 32% occurred at home, 42%
in a hospital, and 18% in a nursing home;
b) Almost 80% say they definitely or probably would like to
talk with a doctor about end of life wishes, but only 7%
have had a doctor speak with them about it; and,
c) The survey also found that what matters most at the end
of life varies by race and ethnicity, for example, Latinos
rate living as long as possible more highly than do other
groups. African Americans and Latinos are much more likely
to place importance on being at peace spiritually. Asians
and white/non-Latinos place the least importance on living
as long as possible. Sixty percent of all respondents say
it is extremely important that their family not be burdened
by decisions regarding their care.
3)Current options at the end of life. While palliative care is
generally agreed to be the standard of care for the dying, in
some cases some patients who are very ill do not respond to
pain medications or may be suffering in other ways that make
comfort impossible. In these circumstances patients' last
resort options include aggressive pain management, forgoing
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life-sustaining treatments, voluntarily stopping eating and
drinking, and sedation to unconsciousness to relieve
suffering.
With terminal sedation (TS), a patient will be given
medications that induce sleep or unconsciousness until death
occurs, often as a result of starvation or dehydration as in
these instances artificial life support (such as tube feeding)
is withheld, or as a result of the underlying illness or
disease. Although death is certain in this instance, it may
not happen for days or weeks. Because the patient is sedated,
they are believed to be free of suffering. Some patients
reject TS because they believe their dignity would be violated
if they have to be unconscious for a prolonged period before
they die, or that their families suffer unnecessarily while
waiting for them to die.
Some patients who are physically capable of taking nourishment
may choose to voluntarily stop eating and drinking (VSED), and
then are gradually allowed to die, primarily of dehydration or
some other complication. Legally, the right of competent,
informed patients to refuse life-prolonging interventions is
clear and voluntary cessation of eating and drinking could be
considered an extension of that right. However, VSED may
initially increase suffering because the patient may
experience thirst and hunger and patients can lose mental
clarity at the end of the process, which may undermine their
sense of personal integrity, or raise questions about whether
the action remains voluntary.
4)Oregon. Oregon's Death with Dignity Act (DWDA), enacted in
late 1997, allows terminally-ill adult Oregonians to obtain
and use prescriptions from their physicians for
self-administered, lethal doses of medications. In 2011, the
Oregon Public Health Division published a summary of DWDA
activity up to 2010 which also examined the larger trends seen
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over 13 years of DWDA. The first prescriptions and deaths
under DWDA occurred in 1998, with 24 prescriptions written and
16 self-administered deaths. At the end of 2010, a total of
821 prescriptions had been written and 525 patients had died
from ingesting medication prescribed under DWDA. The report
noted that demographic characteristics remained relatively
unchanged over 13 years. Of the 65 patients who died under
DWDA in 2010, most (70.8%) were over age 65; the median age
was 72. One hundred percent of decedents were white,
well-educated (42.2% had at least a baccalaureate degree), had
cancer (78.5%), or amyotrophic lateral sclerosis (11%). As in
previous years, the most commonly mentioned end of life
concerns among those who died in 2010 were loss of autonomy
(93.8%), decreasing ability to participate in activities that
made life enjoyable (93.8%), and loss of dignity (78.5%).
Since the law was passed in 1997, a total of 1,327 people have
had DWDA prescriptions written and 859 patients have died from
ingesting medications prescribed under DWDA. Over 90% of
patients who used DWDA were enrolled in hospice.
5)Improved end of life care. A 2001 report published in the
Journal of American Medicine, "Oregon Physicians' Attitudes
About and Experiences with End-of-Life Care Since Passage of
the Oregon Death with Dignity Act," found that a high
proportion of physicians reported they had made efforts to
improve their knowledge of palliative care since DWDA passed
in 1994. Among the 2094 physicians who cared for at least one
terminally ill patient in the previous year, 76% reported that
they had made efforts to improve their knowledge of the use of
pain medications in the terminally ill "somewhat" or "a great
deal," 69% reported that they sought to improve their
recognition of psychiatric disorders, such as depression, and
79% reported that their confidence in the prescribing of pain
medications had improved.
6)Taking the end of life drug. The following narrative
describes how end of life drugs are prepared and ingested. It
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was received from a retired Oregon family physician who wrote
approximately 15 prescriptions for aid-in-dying drugs over the
course of his career:
The most common drug prescribed is 10 grams of
secobarbital (Seconal). A standard size Seconal
capsule is 100 mg [milligram]. This drug was very
commonly used as a sleeping pill before the invention
of the benzodiazepines (e.g. Dalmane, or Valium) and
then later zolpidem (Ambien). The 100 Seconal
capsules are delivered in a bottle with a label
stating they are for use in the Oregon Death with
Dignity Law. In all of the cases I've been involved
with, family members, volunteers, and hospice workers
have all been very aware that the patient has been in
possession of the medication, and I am not aware of a
dose that is unaccounted for. In Oregon it is
important to understand that it would be very unusual
for a patient to actually obtain the drug and then not
use it. It is much more common for the patient to
request that the prescription be held on file at the
pharmacy until they decide to use it. Pharmacies have
been very willing to do this. When the patient
decides to take the drug the capsules are opened and
emptied by the pharmacist, a volunteer or family
member, and the powder is mixed with about three
ounces of liquid for use.
Seconal is not the only drug used in DWDA. According to
the Oregon Public Health Division, DWDA 2013 annual
report, since 2010, the trend has shifted to predominant
use of pentobarbital (90% of all prescriptions in 2013).
Patients are usually also prescribed an anti-nausea
medication to take before ingesting an aid-in-dying drug.
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1)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 charges for services rendered under their
DWDA are paid only with state funds. According to
Compassion & Choices (C&C), the current approximate cost
of the medication in Oregon is $1,500.
2)Rough estimate of potential aid-in-dying participation in
California. On average, over the last 17 years, 50
people a year have used DWDA in Oregon. Oregon has about
33,000 residents die each year. California is
approximately seven times more populous than Oregon and
has approximately 230,000 deaths each year. If the same
percentage of people in California chooses to use the End
of Life Options Act as in Oregon, we may have
approximately 350 participants a year.
3)Shifting views on Death with Dignity. While Death with
Dignity remains a very controversial issue, opinions have
shifted significantly over the last several years. A
Medscape survey of 17,000 United States doctors released
in December 2014 found that 54% of doctors surveyed in
2014 think physician-assisted suicide should be allowed.
That is up from 46% in 2010. A 2014 Gallup poll found
that 69% of Americans support laws allowing doctors to
"end the patient's life by some painless means" if the
patient has an incurable disease. In the same poll, 58%
of Americans said they support laws allowing doctors to
"assist the patient to commit suicide" if the patient has
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an incurable disease and is in severe pain. A June 2015
phone survey of 601 likely November 2016 election voters,
conducted by Goodwin Simon Strategic Research for C&C,
shows nearly 69% of likely voters in California would
favor a Death with Dignity measure, and support is
significant among every voter subgroup, including:
a) Men (70%) and women (67%);
b) Younger voters (69% ages 18-54) and older voters
(68% ages 55+);
c) Catholics (60%), non-evangelical Protestants (65%),
and evangelical Christians (57%); and,
d) Democrats (73%), Independents (80%), and
Republicans (55%).
Only 24% of Californians would oppose the measure.
12)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 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.
AIDS Project Los Angeles supports this bill stating that this
issue is particularly important because of its impact on the
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LGBT community, and noting that the roots of the death with
dignity movement owes much to mothers of men dying painfully
during the early days of the acquired immune deficiency
syndrome (AIDS) epidemic.
The AIDS Healthcare Foundation (AHF) notes they have invested
more than a quarter of a century to the palliative care
necessary to minimize end of life pain and suffering. AHF
states their medical staff has been witness to end stages for
countless citizens that rob the patient of his or her dignity
and impose unnecessary misery and they have employed every
medical device available to them to reduce the misery, often
with little or no success. AHF concludes, when a person with
human immunodeficiency virus (HIV) reaches the end of life
with treatment options no longer available, it is inhumane
that we fail to provide them with the choice that would bring
them peace.
Numerous other organizations support this bill including the
California Council of Churches IMPACT, the California
Association for Nurse Practitioners, and the California
Commission on Aging 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.
13)Opposition. A broad coalition of opposition to this bill,
including, Disability Rights Education & Defense Fund (DREDF),
Silicon Valley Independent Living Center, and The ARC
California 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
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legal it quickly becomes just another treatment option, always
being the cheapest, and therefore, eventually the treatment of
choice.
The California Catholic Conference notes that the mere fact
that this bill has been introduced as part of the second
extraordinary session, which was created to specifically
address the state's future financing of our Medi-Cal and
publicly financed healthcare systems, should invite concern
and offer reason enough to not support this bill.
The Association of Northern California Oncologists states they
oppose this bill for several specific reasons the first, being
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 a terminal diagnosis.
Analysis Prepared by:
Lara Flynn / HEALTH / (916) 319-2097 FN:
0002237
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