BILL ANALYSIS Ó
SB 128
Page 1
Date of Hearing: July 7, 2015
ASSEMBLY COMMITTEE ON HEALTH
Rob Bonta, Chair
SB
128 (Wolk and Monning) - As Amended June 16, 2015
SENATE VOTE: 23-15
SUBJECT: End of life.
SUMMARY: Establishes the End of Life Option Act allowing an
adult with the capacity to make medical decisions, who has been
diagnosed with a terminal disease, to receive a prescription for
an aid-in-dying drug in order to end his or her life in a humane
and dignified manner. Specifically, this bill:
1)Defines various 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.
2)Requires an individual requesting an aid-in-dying drug to have
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done so voluntarily.
3)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.
4)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 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.
5)Specifies that a person will not be considered a qualified
individual solely because of age or disability.
6)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 acting
voluntarily, is not being coerced to make or sign the request,
and has the capacity to make medical decisions.
7)Allows only one of the witnesses to be related to the
individual by blood, marriage, registered domestic
partnership, or adoption or be entitled to a portion of the
individual's estate upon death, and only one of the witnesses
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to own, operate, or be employed at a health care facility
where the individual is receiving medical treatment or
resides.
8)Prohibits the attending physician, consulting physician, or
the mental health specialist of the individual from being a
witness on the written request.
9)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.
10)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 before prescribing, requires the attending physician 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
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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.
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aa) Fulfill all medical record documentation requirements,
including completing the End of Life Option Act Checklist
and placing it in the individual's medical record.
11)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
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.
12)Prior to a qualified individual obtaining an aid-in-dying
drug from the attending physician, requires the consulting
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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;
and,
e) Document all of the above in the individual's medical
record.
13)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
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impaired judgment due to a mental disorder; and,
d) Document all of the above in the individual's medical
record.
14)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;
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.
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15)Outlines the requirements of the form an individual must
submit to request an aid-in-dying drug, including translation
and interpreter requirements. Prohibits an interpreter from
being related to the individual requesting the aid-in-dying
drug and requires interpreters to meet certain professional
association standards.
16)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.
17)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.
18)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.
19)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.
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20)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.
21)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.
22)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.
23)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.
24)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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25)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.
26)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.
27)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.
28)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.
29)Makes knowingly altering or forging a request for an
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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.
30)Makes coercing or exerting undue influence on an individual
to request an aid-in-dying drug punishable as a felony.
31)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.
32)Requires the State Public Health Officer (SPHO) to annually
review a sample of records maintained pursuant to these
provisions and to adopt regulations establishing additional
reporting requirements for physicians and pharmacists designed
to collect information to determine utilization and compliance
with these provisions. Provides that the information
collected is confidential and must be done in a way that
protects the privacy of the patient, their family, and any
medical provider or pharmacist involved with the patient.
33) Based on the information collected, requires the Department
of Public Health (DPH) to compile an annual report and to make
the report public within 30 days of its completion.
34) Requires the SPHO to make an End of Life Option Act
Checklist available to health care providers on DPH's Internet
Website. Specifies the content of the form, which identifies
each and every requirement that must be fulfilled by a health
care provider to be in compliance with the End of Life Option
Act, and requires the form to be completed and maintained in
the patient's medical record.
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35)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.
36)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.
37)Makes the provisions of this bill severable if any provision
is held invalid.
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;
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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.
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 the Medical Board of California (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
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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;
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,
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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
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.
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FISCAL EFFECT: According to the Senate Appropriations
Committee:
1)One-time costs of $265,000 over two years for the development
of regulations by DPH General Fund (GF).
2)One-time costs of $90,000 and ongoing costs of $10,000 per
year for DPH to develop and operate a secure computer system
for tracking patients who have received an aid-in-dying
prescription (GF).
3)Ongoing costs of $235,000 per year for DPH staff to collect
data, follow up on prescriptions with prescribing physicians,
and prepare the required annual report (GF).
4)Ongoing costs of $275,000 per year for DPH staff to review a
sample of the medical records of participating patients, to
ensure compliance with the requirements of this bill (GF).
5)One-time costs of $600,000 over two years for the Department
of Managed Health Care (DMHC) to develop policies, adopt
regulations, and respond to public record requests (Managed
Care Fund). This bill does not mandate coverage for
aid-in-dying medication by health plans. However, because
current law mandates coverage for pain management drugs, DMHC
expects to develop regulations to clarify the responsibilities
of health plans in this area.
6)Minor costs to the MBC: The MBC would not need to amend or
adopt any regulations. The MBC estimates that any additional
enforcement actions due to this bill would result in minor
costs.
7)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
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costs.
8)Minor potential reduction in statewide health care spending
(various funds).
COMMENTS:
1)PURPOSE OF THIS BILL. According to the authors, the End of
Life Option Act would allow an adult individual in California
with a terminal disease who has the capacity to make medical
decisions and who have been given a prognosis of less than six
months to live, the autonomy to exercise ultimate
decision-making authority in end of life decisions. The
authors state, 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 end of life for
those individuals that feel it is right for them. The authors
note there are provisions to safeguard patients from coercion
and to allow voluntary participation by physicians,
pharmacists and health care facilities; that this medical
practice is already recognized in five other states; and,
there is substantial evidence from those states that prove
this law can be used safely and effectively. The authors
contend Californians that are faced with a terminal disease
should not have to leave the state in order to have a peaceful
death, and in the end, how each of us spend the end of our
lives is a deeply personal decision. The authors conclude
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.
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
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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.
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
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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.
c) How we want to die. In February of 2012 the California
Health Care 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
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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.
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
patients' last resort options include aggressive pain
management, forgoing life-sustaining treatments,
voluntarily stopping eating and drinking, and sedation to
unconsciousness to relieve suffering.
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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 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
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
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respond to aggressive symptom-specific palliation. It is
an accepted and appropriate component of end-of-life care
under specific, relatively rare circumstances. 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 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.
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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. 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
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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.
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
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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 choose 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%);
ii) Younger voters (69% ages 18-54) and older
voters (68% ages 55+)
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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. C&C also points to the case of
Brittany Maynard. On November 1, 2014, Brittany Maynard, a
terminally ill California native, died in Oregon after taking
aid-in-dying medication. In the final weeks of her life, Ms.
Maynard partnered with C&C to launch a campaign to make
aid-in-dying an open and accessible medical practice in
California and throughout the country.
The Conference of California Bar Associations (CCBA) states
that this bill deals with fundamental rights of free speech
and self-determination. CCBA notes that the end of life is a
time of great sadness and stress for patients and their
families who should not have their decisions constrained by
criminal laws. CCBA asserts that the right to ask one's
physician for aid-in-dying is based on the simple premise that
people should be free.
AIDS Project, Los Angeles and Equality California support this
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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.
Numerous other organizations support this bill including the
American Civil Liberties Union of California, the American
Federation of State, County and Municipal Employees AFL-CIO,
the American Medical Women's Association, the American Nurses
Association/California, California Council of Churches IMPACT,
the Ethical Culture Society of Silicon Valley, Planned
Parenthood, and the Secular Coalition for California 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, among others, Disability Rights Education & Defense
Fund (DREDF), California Catholic Conference, Silicon Valley
Independent Living Center, and the ARC California 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 state that 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.
Agudath Israel of California states, in order to avoid abuse
or subtle coercion, this bill must include robust and detailed
reporting criteria, requiring in statute that the attending
physician document the reason for the request, how the request
was initiated, and the substance of the discussion of
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alternatives presented to the patient.
The Association of Northern California Oncologists states they
oppose this bill for several specific reasons. First, because
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.
Disability Rights California notes, from their advocacy work,
they know that in medical settings the lives of people with
disabilities are not always valued as highly as those of
people without disabilities, which has led to the failure to
offer or the denial of medical treatment, supports and
services. They state, in addition, in society at large,
people with disabilities and seniors are subject to fears and
stereotypes that devalue their lives and some people
considering assisted suicide are experiencing disability,
caused by their underlying diagnosis, for the first time.
3)RELATED LEGISLATION.
a) SB 19 (Wolk) establishes the Physician Orders for Life
Sustaining Treatment (POLST) registry. SB 19 is scheduled
to be heard in the Assembly Health Committee on July 7,
2015.
b) SB 149 (Stone), SB 715 (Anderson), and AB 159 (Calderon)
permit a manufacturer of an investigational drug,
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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
recommendation or prescription is consistent with medical
standards of care. SB 149 is pending in the Assembly
Business and Professions Committee and SB 715 is pending in
the Senate Health Committee. AB 159 is pending in the
Senate Appropriations Committee.
c) AB 637 (Campos) 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. AB 637 is currently pending a vote on the
Senate Floor.
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
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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 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 palliative care services in a manner that is
cost-neutral to the GF, 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
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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
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)DOUBLE REFERRAL. This bill is double referred; upon passage
in this Committee, this bill will be referred to the Assembly
Judiciary Committee.
6)SUGGESTED AMENDMENTS. In order to further protect patients
from the possibility of coercion, to ensure complete and
accurate data collection, and to clarify and strengthen the
DPH reporting requirements regarding the use of aid-in-dying
drugs, the Committee may wish to amend the bill as follows:
a) To require the attending and consulting physician's,
within 30 calendar days of approving a qualified patient
for a prescription for an aid-in-dying drug, to send a
Compliance Form to DPH which contains the following
information, which will be used by DPH to create an annual
compliance and utilization report:
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i) The patient's name and date of birth and the
attending or consulting physician's name and telephone
number;
ii) A determination that the patient has a terminal
disease and has six months or less to live;
iii) A determination that the patient is capable, and
acting voluntarily;
iv) A determination that the patient has made his/her
decision after being fully informed of:
(1) His or her medical diagnosis and prognosis;
(2) The potential risks associated with taking the
aid-in-dying drug; and,
(3) The feasible alternative, including, but not
limited to, comfort care, hospice care, and pain
control.
v) A determination that the patient is not suffering
from a psychiatric or psychological disorder, or
depression causing impaired judgment.
b) To require the attending physician within 30 calendar
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days of approving a qualified patient for a prescription
for an aid-in-dying drug, to send a copy of the patient's
written, witnessed request to DPH.
c) To require the attending physician to file an Attending
Physician Follow-up Form with DPH within 30 calendar days
of the death of a patient with a prescription for an aid-in
dying drug, that includes, but is not limited to the
following information:
i) The cause of death, whether from the aid-in-dying
drug or the underlying illness, or from another cause
such as terminal sedation or ceasing to eat or drink;
ii) If the patient died from ingesting an aid-in-dying
drug, whether or not the attending physician was present
at the time of death, or if another licensed health care
provider was present, or if no licensed health care
provider was present at the time of death;
iii) If the attending physician or another licensed
health care provider was present at the time of death,
whether or not the physician or health care provider was
present when the patient ingested the aid-in-dying drug,
and whether or not they were at the patient's bedside at
the time of death;
iv) The day the patient consumed the aid-in-dying
drug, and the day the patient died;
v) Where the patient ingested the aid-in dying drug;
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a private home, assisted living facility, nursing home,
acute care hospital inpatient, in-patient hospice
resident, or some other location;
vi) The length of time between ingesting the
aid-in-dying drug and unconsciousness;
vii) The time between ingesting the aid-in dying drug
and death;
viii) Any complications that occurred, such as vomiting,
seizures, or regaining consciousness;
ix) Whether or not the Emergency Medical System
activated for any reason after the aid-in-dying drug was
ingested;
x) Whether or not the patient was receiving hospice
care;
xi) The date on which the attending physician began
caring for the patient, and the date on which the
aid-in-dying prescription was written;
xii) A list of concerns with check boxes (labeled yes,
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no, don't know) to indicate whether or not the physician
believes they may have contributed to the patient's
decision to request a prescription for the aid-in-dying
drug, including:
(1) The financial cost of treating or prolonging
his or her terminal condition;
(2) The physical or emotional burden on family,
friends, or caregivers;
(3) His or her terminal condition representing a
steady loss of autonomy;
(4) The decreasing ability to participate in
activities that made life enjoyable;
(5) The loss of control of bodily functions, such
as incontinence and vomiting;
(6) Inadequate pain control at the end of life;
or,
(7) A loss of dignity.
xiii) The type of health care coverage the patient had
for their underlying illness, if any.
d) Technical amendment regarding conflicting requirements
for witnesses. The bill outlines specific requirements for
who may act as a witness to a patients request for an
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aid-in-dying drug, and what they must attest to. The bill
also specifies the exact content of the witness form;
however the requirements on the form differ from those in
this bill language. This bill should be amended to conform
the requirements in the bill to the language specified on
the form.
REGISTERED SUPPORT / OPPOSITION:
Support
Honorable Dianne Feinstein, United States
Senator
Insurance Commissioner Dave Jones
State Controller Betty Yee
AIDS Healthcare Foundation
AIDS Project Los Angeles
Alameda County Board of Supervisors
American Civil Liberties Union of California
American Federation of State, County and Municipal Employees,
AFL-CIO
American Medical Student Association
American Medical Women's Association
American Nurses Association, California
Area Agency on Aging
Bloom in the Desert Ministries United Church of Christ
Brownie Mary Democratic Club
California Association of Nurse Practitioners
California Church IMPACT
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California Commission on Aging
California Primary Care Association
California Psychological Association
California Senior Legislature
Camarillo Health Care District
Cardinal Point at Mariner Square Residents' Association
Cathedral City
Cities of Los Angeles, San Jose, Santa Barbara, and West
Hollywood
Civil Rights for Seniors
Coastside Democrats
Compassion & Choices
Conference of California Bar Associations
Congress of California Seniors
County of Santa Barbara Board of Supervisors
County of Santa Cruz Board of Supervisors
Death with Dignity National Center
Democratic Party of Orange County
Democratic Party of Santa Barbara County
Democratic Party of Santa Cruz County
Democratic Women of Monterey County
Democratic Women of Santa Barbara County
Democratic Women's Club of Santa Cruz County
Democrats of Napa Valley Club
Desert AIDS Project
Desert Stonewall Democrats
Equality California
Ethical Culture Society of Silicon Valley
Full Circle Living and Dying Collective
GLMA: Health Professionals Advancing LGBT Equality
Gray Panthers of Long Beach
Hemlock Society of San Diego
I Care for Your Loved One Compassionate Senior Services
Kings County Democratic Central Committee
Laguna Woods Democratic Club
Libertarian Party of Orange County
Lompoc Valley Democratic Club
Los Angeles County Democratic Party
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Los Angeles LGBT Center
Mar Vista Community Council
Monterey County Board of Supervisors
Morongo Basin Democratic Club
Napa County Democratic Central Committee
National Association of Social Workers - California Chapter
National Center for Lesbian Rights
National Council of Jewish Women
Older Women's League-San Francisco
Planned Parenthood
Progressive Democrats of America California
Potrero Hill Democratic Club
San Francisco AIDS Foundation
San Francisco for Democracy
San Mateo County Democracy for America
San Mateo County Democratic Central Committee
San Mateo County Medical Association
Santa Barbara County District Attorney Joyce L. Dudley
Secular Coalition for California
Shared Crossing Project
Sierra County Democratic Party
Sonoma County Democratic Party
South Orange County Democratic Club
Sun City Democrats
Tam Nguyen, Councilmember, City of San Jose
Trinity County Democratic Central Committee
Trinity County Progressives
Trinity United Methodist Church
Ventura County Board of Supervisors
Hundreds of individuals
Opposition
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Agudath Israel of California
Alliance of Catholic Health Care
The Arc of California
Archdiocese of Los Angeles, Archbishop José H. Gomez
Arroyo Grande Community Hospital, Dignity Health Affiliate
Association of Northern California Oncologists
California Catholic Conference
California Disability Alliance
California Foundation for Independent Living Centers
California Nurses for Ethical Standards
California Prolife Council
Capitol Resource Institute
Choice is an Illusion
Coalition of Concerned Medical Professionals
Communities Actively Living Independent and Free
Communities United In Defense of Olmstead
Concerned Women for America
Dignity Health
Disability Action Center
Disability Rights California
Disability Rights Education & Defense Fund
Faith and Public Policy, Calvary Chapel Chino Hills Ministry
FREED Center for Independent Living
Independent Living Resource Center of San Francisco
Independent Living Center of Southern California
Knights of Columbus Council 1920, Glendale, California
Life Legal Defense Foundation
Life Priority Network
Medical Oncology Association of Southern California
National Right to Life Committee
Osteopathic Physicians & Surgeons of California
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Patients Right Action Fund
Placer Independent Resource Services
Polio Survivors Association
Providence Health & Services
Queen of the Valley Medical Center
Scholl Institute of Bioethics
Silicon Valley Independent Living Center
Dr. Aaron Kheriaty, Associate Clinical Prof of Psychiatry,
University of California Irvine
Hundreds of individuals
Opponents have submitted petitions that they purport contain
over 11,000 signatures
Analysis Prepared by:Lara Flynn / HEALTH / (916)
319-2097