BILL ANALYSIS Ó
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Date of Hearing: September 1, 2015
ASSEMBLY COMMITTEE ON PUBLIC HEALTH AND DEVELOPMENTAL SERVICES
Rob Bonta, Chair
ABX2 15
(Eggman, et.al.) - As Introduced August 17, 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:
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
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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
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.
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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
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;
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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,
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:
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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.
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.
12)Once all of the requirements have been met, allows the
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attending physician to deliver the aid-in-dying drug in any of
the following ways:
a) Dispensing the aid-in-dying drug directly, including
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;
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d) Refer the individual for a mental health specialist
assessment, if there are indications of a mental disorder;
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
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physician has determined that the individual is not a
qualified individual;
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.
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19)Makes a provision in a contract, will, or other agreement
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.
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24)Protects a person from civil, criminal, administrative,
employment, or contractual liability or professional
disciplinary action for participating in the provisions of
this bill, including an individual who is present when a
qualified individual self-administers the prescribed
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 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.
28)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.
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29)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.
30)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.
31)Clarifies 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.
32)Makes knowingly altering or forging a request for an
aid-in-dying drug to end an individual's life without their
authorization, or concealing or destroying a withdrawal or
rescission of a request, punishable as a felony.
33)Makes coercing or exerting undue influence on an individual
to request an aid-in-dying drug punishable as a felony.
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34)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.
35)Specifies that nothing in these provisions may be construed
to limit civil liability.
36)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.
37)Requires DPH, on or before July 1, 2017, and each year
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
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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;
iv)Sex;
v) Type of insurance, including whether or not they had
insurance; and,
vi)Underlying illness.
38)Requires DPH to make the following forms available on its
Internet Website: 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
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care provider to be in compliance with the End of Life Option
Act.
39)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
(BOP) or a federal Drug Enforcement Administration approved
take back program.
40)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.
41)Requires the Medical Board of California (MBC), on or before
January 1, 2019, to develop, revise, 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 Website.
42)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.
43)Makes the provisions of this bill severable if any provision
is held invalid.
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EXISTING LAW:
1)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:
a) Hospice care at home or in a health care setting;
b) A prognosis with and without the continuation of
disease-targeted treatment;
c) The patient's right to refusal of or withdrawal from
life-sustaining treatment;
d) The patient's right to continue to pursue
disease-targeted treatment, with or without concurrent
palliative care;
e) The patient's right to comprehensive pain and symptom
management at the end of life; and,
f) 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.
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2)Requires a health care provider who does not wish to provide
the information in 1) above to refer or transfer a patient to
another health care provider who will.
3)Licenses and regulates physicians and surgeons under the
Medical Practice Act by MBC, within the Department of Consumer
Affairs (DCA) and provides for the licensure and regulation of
pharmacies, pharmacists and wholesalers of dangerous drugs or
devices by the BOP, also within the DCA.
4)Mandates health care practitioners to report any suspected
elder abuse.
5)Provides, for purposes of a judicial determination, a person
has the capacity to give informed consent to a proposed
medical treatment if the person is able to do all of the
following:
a) Respond knowingly and intelligently to queries about
that medical treatment;
b) Participate in that treatment decision by means of a
rational thought process; and,
c) Understand all of the following items of minimum basic
medical treatment information with respect to that
treatment:
i) The nature and seriousness of the illness, disorder,
or defect that the person has;
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ii) The nature of the medical treatment that is being
recommended by the person's health care providers;
iii) The probable degree and duration of any benefits and
risks of any medical intervention that is being
recommended by the person's health care providers, and
the consequences of lack of treatment; and,
iv) The nature, risks, and benefits of any reasonable
alternatives.
6)Provides that a person who has the capacity to give informed
consent to a proposed medical treatment also has the capacity
to refuse consent to that treatment.
7)Provides that a resident of a long-term care facility lacks
the capacity to make a decision regarding his or her health
care if the resident is unable to understand the nature and
consequences of the proposed medical intervention, including
its risks and benefits, or is unable to express a preference
regarding the intervention. Requires the physician, in making
the determination regarding capacity, to interview the
patient, review the patient's medical records, and consult
with facility staff, family members and friends of the
resident, if any have been identified.
8)Requires the physician and surgeon last in attendance, or in
the case of a patient in a long-term care facility at the time
of death, the physician last in attendance or a licensed
physician assistant under the supervision of the physician
last in attendance, on a deceased person, to state on the
certificate of death the disease or condition directly leading
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to death, antecedent causes, other significant conditions
contributing to death and any other medical and health section
data as may be required on the certificate. Requires the
physician or physician assistant to specifically indicate the
existence of any cancer, as defined, of which the physician or
physician assistant has actual knowledge.
FISCAL EFFECT: This bill has not been analyzed by a fiscal
committee.
COMMENTS:
1)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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2)BACKGROUND. 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.
a) Dying in America. A 2014 report published by the
Institute of Medicine, "Dying in America: Improving
Quality and Honoring Individual Preferences Near the End of
Life," identified persistent major gaps in care near the
end of life that require urgent attention. Understanding
and perceptions of death and dying vary considerably across
the population and are influenced by culture, socioeconomic
status, and education, as well as by misinformation and
fear. Engaging people in defining their own values, goals,
and preferences concerning care at the end of life, and
ensuring that their care team understands their wishes, has
proven remarkably elusive and challenging. While the
clinical fields of hospice and palliative care have become
more established, the number of specialists in these fields
is too small. Too few clinicians in the primary and
specialty fields that entail caring for individuals with
advanced serious illnesses are proficient in basic
palliative care. Often, clinicians are reluctant to have
honest and direct conversations with patients and families
about end of life issues. Patients and families face
additional difficulties presented by the health care system
itself, which does not provide adequate financial or
organizational support for the kinds of health care and
social services that might truly make a difference to them.
The report notes that a patient-centered, family-oriented
approach to care near the end of life should be a high
national priority and that compassionate, affordable, and
effective care for these patients is an achievable goal.
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b) 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. A Center to Advance Palliative Care and
National Palliative Care Research Center analysis conducted in
July of 2012, found that larger hospitals are more likely to
have a palliative care team. More than 81% of hospitals in the
U.S. with more than 300 beds have a palliative care team, while
less than one-quarter of hospitals with fewer than 50 beds
reported having a palliative care team.
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c) 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:
i) 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;
ii) 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,
iii) 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.
d) 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
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patients' last resort options include aggressive pain
management, forgoing 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.
e) Ethics. The American Medical Association (AMA) code of
medical ethics (opinion 2.201) states the duty to relieve
pain and suffering is central to the physician's role as
healer and is an obligation physicians have to their
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patients. Palliative sedation to unconsciousness is the
administration of sedative medication to the point of
unconsciousness in a terminally ill patient. It is an
intervention of last resort to reduce severe, refractory
pain or other distressing clinical symptoms that do not
respond to aggressive symptom-specific palliation.
Palliative sedation is an accepted and appropriate
component of end-of-life care under specific, relatively
rare circumstances. Indeed, the AMA code states, when
symptoms cannot be diminished through all other means of
palliation, including symptom-specific treatments, it is
the ethical obligation of a physician to offer palliative
sedation to unconsciousness as an option for the relief of
intractable symptoms.
f) 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 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
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(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.
g) 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.
h) Taking the end of life drug. The following narrative
describes how end of life drugs are prepared and ingested.
It 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. 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.
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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.
i) 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.
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j) 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.
aa) 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 U.S.
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 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:
i) Men (70%) and women (67%);
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ii) Younger voters (69% ages 18-54) and older
voters (68% ages 55+);
iii) Catholics (60%), non-evangelical Protestants
(65%), and evangelical Christians (57%); and,
iv)Democrats (73%), Independents (80%), and Republicans
(55%).
Only 24% of Californians would oppose the measure.
1)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
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 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
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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
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.
2)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
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 the bill.
The Association of Northern California Oncologists states they
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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.
3)RELATED LEGISLATION.
a) SB 128 (Wolk and Monning) is substantially similar to
this bill. SB 128 is pending a hearing in the Assembly
Health Committee.
b) SB 19 (Wolk) establishes the Physician Orders for Life
Sustaining Treatment (POLST) eRegistry Pilot. SB 19 is
pending a vote on the Assembly Floor.
c) SB 149 (Stone), SB 715 (Anderson), and AB 159 (Calderon)
permit a manufacturer of an investigational drug,
biological product, or device to make the product available
to eligible patients with terminal illnesses, and
authorizes a health plan to provide coverage for any
investigational drug, biological product, or device made
available pursuant to these provisions. The bills also
prohibit the MBC and the Osteopathic Medical Board of
California from taking any disciplinary action against the
license of a physician based solely on the physician's
recommendation to an eligible patient regarding, or
prescription for or treatment with, an investigational
drug, biological product, or device, provided that the
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recommendation or prescription is consistent with medical
standards of care. SB 149 was held in the Assembly
Appropriations Committee and SB 715 is pending in the
Senate Health Committee. AB 159 is pending a vote on the
Senate Floor.
d) AB 637 (Campos) Chapter 217, Statutes of 2015, allows
nurse practitioners and physician assistants acting under
the supervision of the physician and within the scope of
practice authorized by law to sign a POLST form.
4)PREVIOUS LEGISLATION.
a) AB 2139 (Eggman), Chapter 568, Statutes of 2014,
requires a health care provider, when making 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.
Extends the right to request information to a person
authorized to make health care decisions for the patient
and specifies that the information may be provided at the
time of diagnosis or at a subsequent visit with the health
care provider.
b) SB 1357 (Wolk), of 2014 would have established a POLST
registry at the California Health and Human Services
Agency. SB 1357 was held on the Senate Appropriations
suspense file.
c) SB 1004 (Ed Hernandez), Chapter 574, Statutes of 2014,
requires the Department of Health Care Services (DHCS) to
assist Medi-Cal managed care plans in delivering palliative
care services, and requires DHCS to consult with
stakeholders and directs DHCS to ensure the delivery of
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palliative care services in a manner that is cost-neutral
to the General Fund, to the extent practicable.
d) AB 2747 (Berg), Chapter 683, Statutes of 2008,
facilitates end of life care communication between doctors
and their patients by enacting the California Right to Know
End-of-Life Act of 2008 to ensure that health care
providers provide critically-needed information in
carefully-circumscribed instances.
e) AB 3000 (Wolk), Chapter 266, Statutes of 2008, creates
POLST in California, which is a standardized form to
reflect a broader vision of resuscitative or
life-sustaining requests and to encourage the use of POLST
orders to better handle resuscitative or life sustaining
treatment consistent with a patient's wishes.
f) AB 374 (Berg), of 2007, would have enacted the
California Compassionate Choices Act, which would authorize
competent adults who have been determined by two physicians
to be suffering from a terminal disease to make a request
for medication to hasten the end of their lives in a humane
manner. AB 374 was moved to the inactive file on the
Assembly Floor without a vote recorded.
g) AB 651 (Berg), of 2006, would have established a
procedure for a competent adult person who is terminally
ill and expected to die within six months to obtain from
his or her physician a prescription for medication that he
or she may self-administer in order to end his or her life.
AB 651 failed passage in the Senate Judiciary Committee.
h) AB 654 (Berg), of 2005, would have enacted the
California Compassionate Choices Act, which would authorize
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competent adults who have been determined by two physicians
to be suffering from a terminal disease to make a request
for medication to hasten the end of their lives in a humane
and dignified manner. AB 654 was moved to the inactive
file on the Assembly Floor without a vote recorded.
5)SUGGESTED AMENDMENTS.
a) As currently drafted the bill provides immunity to
persons participating in good faith with these provisions
who are present when a qualified individual
self-administers the prescribed aid-in-dying drug. In
order to clarify that this provision applies to individuals
who are not health care providers, the Committee may wish
to amend the bill as follows:
443.14. (a) Notwithstanding any other law, a person , other
than a health care provider, shall not be subject to civil
or criminal liability solely because the person was present
when the qualified individual self-administers the
prescribed aid-in-dying drug. A person who is present may,
without civil or criminal liability, assist the qualified
individual by preparing the aid-in-dying drug so long as
the person does not assist the qualified person in
ingesting the aid-in-dying drug. criminal, administrative,
employment, or contractual liability or professional
disciplinary action for participating in good faith
compliance with this part, including an individual who is
present when a qualified individual self-administers the
prescribed aid-in-dying drug .
b) As currently drafted the bill provides blanket immunity
for health care providers participating in these
provisions, even in instances where their actions are
grossly negligent. The Committee may wish to amend the
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bill as follows:
443.14 (d) The immunities from liability specified in
this section do not apply to any acts or omissions
constituting gross negligence or willful or wanton
misconduct.
c) As currently drafted the bill requires DPH to report
information based on information collected from the
attending physician, and for the report to be available to
the public, however it does not specifically require DPH to
post the report on its Internet Web site. The Committee
may wish to amend the bill as follows:
(b) On or before July 1, 2017, and each year thereafter,
based on the information collected in the previous year,
the department shall report create a report with the
information collected from the attending physician
follow-up form follow-up form, and post that report to its
Internet Web site .
d) As currently drafted the bill requires the Medical Board
to revise several of the forms required by this bill. The
Committee may wish to amend the bill to instead authorize
the Board to update the forms when and if that becomes
necessary.
e) Additional minor, technical amendments to correct
drafting errors and add Speaker Atkins, Assemblymember
Perea, and Senator Glazer as co-authors.
REGISTERED SUPPORT / OPPOSITION:
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Support
Insurance Commissioner Dave Jones
AIDS Healthcare Foundation
AIDS Project Los Angeles
Area Agency on Aging, Central Coast Commission for Senior
Citizens
Bloom in the Desert Ministries
California Association of Marriage and Family Therapists
California Association for Nurse Practitioners
California Church IMPACT
California Commission on Aging
California Democratic Party
California Primary Care Association
Cardinal Point at Mariner Square Residents' Association
Coastside Democrats
Compassion & Choices, California
County of Santa Cruz
Democratic Women of Santa Barbara County
Desert Stonewall Democrats
Full Circle Living & Dying Collective
Gay and Lesbian Medical Association
Gray Panthers of Long Beach
Laguna Woods Democratic Club
Mar Vista Community Council
National Association of Social Workers, California Chapter
Older Women's League, San Francisco
Potrero Hill Democratic Club
Progressive Christians Uniting
Sacramento Central Labor Council AFL-CIO
San Francisco AIDS Foundation
Santa Barbara County Board of Supervisors
San Mateo County Medical Association
Unitarian Universalist Church of the Desert
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Ventura County Board of Supervisors
West Hollywood United Church of Christ
Numerous individuals
Opposition
Agudath Israel of California
Alliance of Catholic Health Care
Arroyo Grande Community Hospital
Association of Northern California Oncologists
Autistic Self Advocacy Network
California Catholic Conference
California Disability Alliance
California Foundation for Independent Living Centers
California Hospital Medical Center
California Nurses for Ethical Standards
Choice is an Illusion
Coalition of Concerned Medical Professionals
Communities Actively Living Independent and Free
Community Hospital of San Bernardino
Communities United in Defense of Olmstead
Crusade for Life
Dignity Health
Disability Action Center
Disability Rights Education & Defense Fund
Dominican Hospital
FREED Center for Independent Living
Glendale Memorial Hospital and Health Center
Independent Living Center of Southern California
Independent Living Resource Center, San Francisco
Life Priority Network
League of United Latin American Citizens, Evergreen Council
League of United Latin American Citizens, Mayfair Council
League of United Latin American Citizens, Santa Clara Council
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Marian Regional Medical Center
Medical Oncology Association of Southern California, Inc.
Mercy General Hospital
Mercy Hospital Folsom
Mercy Medical Center
Mercy Medical Center Mt. Shasta
Patients' Rights Action Fund
Placer Independent Resource Services
Providence Health & Services, Southern California
The Salvador E. Alvarez Institute for Non-Violence
Santa Rosa Memorial Hospital
Scholl Institute of Bioethics
Sequoia Hospital
Silicon Valley Independent Living Center
St. Agnes Medical Center
St. Bernardine Medical Center
St. John's Regional Medical Center & Pleasant Valley Hospital
St. Joseph's Behavioral Health Center
St. Joseph Health
St. Joseph Health, Mission Hospital Viejo & Laguna Beach
St. Joseph Hospital, Orange
St. Joseph's Medical Center
St. Joseph Health, Queen of the Valley
St. Jude Medical Center
St. Mary Medical Center, Long Beach
St. Mary Medical Center, Apple Valley
The Arc, California
Numerous individuals
Analysis Prepared by:Lara Flynn / HEALTH / (916) 319-2097
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