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SENATE COMMITTEE ON HEALTH
Senator Ed Hernandez, O.D., Chair
BILL NO:
AUTHOR:
VERSION:
HEARING DATE:
CONSULTANT:
SB 128
Wolk and Monning
March 17, 2015
March 25, 2015
Teri Boughton
SUBJECT: End of life
SUMMARY: Permits a competent, qualified individual who is a terminally ill adult to receive a
prescription for aid in dying medication if certain conditions are met, such as two oral requests, a
minimum of 15 days apart, and a written request signed by two witnesses, is provided to his or
her attending physician, the attending physician refers the patient to a consulting physician to
confirm diagnosis and competency of the patient, and the attending physician refers the patient
for counseling, if appropriate. Protects a person from civil or criminal liability, or professional
disciplinary action, for participating in good faith compliance with this bill. Permits a person or
entity that elects, for reasons of conscience, morality, or ethics, not to engage in activities
authorized pursuant to this bill. Makes it a felony to knowingly alter or forge a request for
medication to end an individual’s life without his or her authorization or concealing or
destroying a rescission of a request for medication if the act is done with the intent or effect of
causing the individual’s death. Makes it a felony to knowingly coerce or exert undue influence
on an individual to request medication for the purpose of ending his or her life.
Existing law:
1. Establishes requirements for health care providers when a provider makes a diagnosis that a
patient has a terminal illness, including that the patient has a right to comprehensive
information and counseling regarding legal end of life options.
2. Requires the comprehensive information to include, but not be limited to:
a.
b.
c.
d.
Hospice care at home or in a health care setting;
A prognosis with and without the continuation of disease-targeted treatment;
The right to refuse or withdraw from life-sustaining treatment;
The right to continue to pursue disease-targeted treatment, with or without
concurrent palliative care;
e. The right to comprehensive pain and symptom management at the end of life,
including, but not limited to, adequate pain medication, treatment of nausea,
palliative chemotherapy, relief from shortness of breath and fatigue, and other
clinical treatments useful when a patient is actively dying; and,
f. The right to give individual health care instruction, such as an advance health care
directive, and the right to appoint a legally recognized health care decision-maker.
3. 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.
c. Understand all of the following items of minimum basic medical treatment
information with respect to that treatment:
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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.
iv. The nature, risks, and benefits of any reasonable alternatives.
4. 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.
5. Provides that a resident of a long term care facility lacks 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.
6. Makes it a felony to deliberately aid, or advise, or encourage another to commit suicide.
7. Requires licensed health care prescribers eligible to prescribe controlled substances, and
pharmacists authorized to dispense controlled substances who dispense Schedule II through
IV controlled substances to provide the dispensing information to the Department of Justice
(DOJ) on a weekly basis in a format approved and accepted by the DOJ, as specified.
8. Establishes the State Public Health Officer (SPHO), who is a California licensed physician
and surgeon with demonstrated medical, public health, and management experience, to serve
as the director of the State Department of Public Health (DPH). Establishes the Department
of Social Services (DSS) to administer human assistance programs that provide cash aid and
services to eligible needy families, and licenses and regulates residential care facilities for the
elderly.
9. 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 Board of Pharmacy, also within the DCA.
10. Requires the physician and surgeon last in attendance, or in the case of a patient in a longterm care at the time of death, the physician and surgeon last in attendance or a licensed
physician assistant under the supervision of the physician and surgeon 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
and surgeon or physician assistant to specifically indicate the existence of any cancer as
defined, of which the physician and surgeon or physician assistant has actual knowledge.
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This bill:
1. Permits a competent, qualified individual, as defined, who is a terminally ill adult to make a
request to receive a prescription for aid in dying medication if all of the following conditions
are satisfied:
a. The attending physician has determined the individual to be suffering from a
terminal illness;
b. The individual has voluntarily expressed the wish to receive a prescription for aid
in dying medication;
c. The individual is a resident of California and is able to establish residency
through:
i. California driver license or other identification issued by the State of
California;
ii. Registration to vote;
iii. Evidence of property ownership or lease; or,
iv. California tax return for the most recent year; and,
d. The individual documents his or her request for aid in dying medication, as
specified.
2. Prohibits a person from being a “qualified individual” based on age or disability.
3. Prohibits a request for aid in dying medication made on behalf of a patient through a power
of attorney, an advance health care directive, or a conservator.
4. Requires a qualified individual wishing to receive a prescription for aid in dying medication
to submit two oral requests, a minimum of 15 days apart, and a witnessed written request, as
specified, to his or her attending physician.
5. Requires at least two adult witnesses who attest that to the best of their knowledge and belief
the individual is competent, acting voluntarily, and not being coerced to sign the request.
6. Permits one of the two witnesses to be related by blood, marriage, or adoption; or be a person
entitled to a portion of the person’s estate upon death. Permits one of the two witnesses to
own, operate, or be employed at a health care facility where the qualified individual is
receiving medical treatment or resides. Prohibits the attending physician from being one of
the witnesses.
7. Permits a qualified individual to rescind his or her request at any time without regard to their
mental state.
8. Requires the attending physician to:
a. Make the initial determination whether the requesting adult is competent, has a
terminal illness, has voluntarily made the request, and is a qualified individual.
b. Ensure the individual is making an informed decision by discussing with him or
her the medical diagnosis and prognosis, potential risks with taking the
medication, the probable result of taking the medication, the possibility that he or
she may choose to obtain the medication but not take it, and the feasible
alternatives or additional treatment opportunities including, but not limited to,
comfort care, hospice care, palliative care, and pain control.
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c. Refer the individual to a consulting physician, (defined as a physician who is
qualified by specialty or experience to make a professional diagnosis and
prognosis regarding the individual’s illness), for medical confirmation of the
diagnosis, prognosis, and for a determination that the individual is competent and
has complied with this bill.
d. Refer the individual for counseling, if appropriate. Defines counseling as one or
more consultations, as necessary, between an individual and a California licensed
psychiatrist or psychologist for the purpose of determining that the individual is
competent and is not suffering from a psychiatric or psychological disorder or
depression causing impaired judgment.
e. Ensure that the individual’s request does not arise from coercion or undue
influence by another person.
f. Counsel the individual about the importance of having another person present
when he or she takes the medication and not taking the medication in a public
place.
g. Inform the individual that he or she may rescind the request at any time and in any
manner.
h. Offer the individual an opportunity to rescind the request before prescribing the
medication.
i. Verify, immediately prior to writing the prescription for medication, that the
individual is making an informed decision.
j. Ensure that all appropriate steps are carried out in accordance with this bill prior
to writing a prescription.
k. Fulfill the record documentation that may be required through regulation by DPH,
in consultation with DSS, as specified.
9. Permits the attending physician to deliver the medication in any of the following ways:
a. Dispense directly, including ancillary medication intended to minimize
discomfort, if the 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, contact a pharmacist, inform the pharmacist
of the prescription, and deliver the written prescriptions personally, by mail, or
electronically to the pharmacist, who is required to dispense the medications to
the qualified individual, the attending physician, or a person expressly designated
by the individual and with the designation delivered to the pharmacist in writing
or verbally.
10. Permits delivery of the dispensed medication to the qualified individual, the attending
physician, or a person expressly designated by the qualified individual to be made by:
personal delivery, United Parcel Service, United States Postal Service, Federal Express, or by
messenger service.
11. Requires, prior to a qualified individual obtaining aid in dying medication from the attending
physician, the consulting physician to perform all of the following:
a. Examine the individual and his or her relevant medical records;
b. Confirm in writing the diagnosis and prognosis;
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c. Verify, in the opinion of the consulting physician, that the qualified individual is
competent, acting voluntarily, and has made an informed decision; and,
d. Fulfill the record documentation that may be required through regulation by DPH,
in consultation with DSS.
12. Permits the attending physician to sign the qualified individual’s death certificate unless
otherwise prohibited by law. Requires the cause of death to be the underlying terminal
illness.
13. Prohibits an individual from receiving a prescription for aid in dying medication unless he or
she has made an informed decision. Requires the attending physician, immediately before
writing a prescription for aid in dying medication, to verify that the individual is making an
informed decision.
14. Establishes a format for the aid in dying medication request and requires that a request be in
substantially the same form. Requires the request to be written in the same translated
language as any conversations, or consultations between a patient and his or her attending or
consulting physicians. Authorizes a written request in English if accompanied by an
interpreters declaration signed under penalty of perjury. Specifies the words of the
declaration. Requires the interpreter to be qualified, as specified in Department of Managed
Health Care regulations applicable to health care service plans and not related to the qualified
individual by blood, marriage, or adoption or be entitled to a portion of the person’s estate
upon death.
15. Makes a provision in a contract, will, or other agreement, whether written or oral, affecting
whether a person may make or rescind a request for aid in dying medication, invalid.
Prohibits an obligation owing under any contract in effect on January 1, 2016, from being
conditioned upon or affected by a person making or rescinding a request for aid in dying
medication.
16. Prohibits the sale, procurement, or issuance of a life, health, 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 or
rescinding a request for aid in dying medication.
17. Provides, notwithstanding any other law, that a qualified individual’s act of selfadministering aid in dying medication may not have an effect upon a life, health, or accident
insurance or annuity policy other than that of a natural death from the underlying illness.
18. Protects a person, notwithstanding any other law, from civil or criminal liability or
professional disciplinary action for participating in good faith compliance with this bill,
including an individual who is present when a qualified individual self-administers the
prescribed aid in dying medication.
19. Prohibits a health care provider or professional organization or association from censoring,
disciplining, suspending, or revoking licensure, privileges, membership, or administering
other penalty to an individual for participating or refusing to participate in good faith
compliance with this bill.
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20. Provides that a request by an individual to an attending physician or to a pharmacist to
dispense aid in dying medication or to provide aid in dying medication in good faith
compliance with the provisions of this bill does not constitute neglect or elder abuse for any
purpose of law or provide the sole basis for the appointment of a guardian or conservator.
21. Requires participation in activities authorized pursuant to this bill to be voluntary. Permits a
person or entity that elects, for reasons of conscience, morality, or ethics, not to engage in
activities authorized pursuant to this bill, and provides that a person or entity is not required
to take any action in support of a patient’s decision under this bill, except as otherwise
required by law.
22. Requires, if a health care provider is unable or unwilling to carry out an individual’s request
under this bill and the individual transfers care to a new health care provider, the prior health
care provider to transfer, upon request, a copy of the individual’s relevant medical records to
the new health care provider.
23. Provides that nothing in this bill prevents a health care provider from providing an individual
with health care services that do not constitute participation in this bill.
24. Prohibits a health care provider from being sanctioned for: making an initial determination
that an individual has a terminal illness and informing him or her of the medical prognosis;
providing information about the End of Life Option Act to a patient upon the request of the
individual; providing an individual, upon request, with a referral to another physician; or,
contracting with an individual to act outside the course and scope of the provider’s capacity
as an employee or independent contractor of a health care provider that prohibits activities
under this bill.
25. Provides, notwithstanding any contrary provision in this bill, the immunities and prohibitions
on sanctions of a health care provider are solely reserved for actions taken pursuant to this
bill and those providers may not be sanctioned for conduct and actions not included and
provided for in this bill if the conduct and actions do not comply with the standards and
practices set forth by the MBC.
26. Makes it a felony to knowingly alter or forge a request for medication to end an individual’s
life without his or her authorization or concealing or destroying a rescission of a request for
medication if the act is done with the intent or effect of causing the individual’s death.
27. Makes it a felony to knowingly coerce or exert undue influence on an individual to request
medication for the purpose of ending his or her life or to destroy a rescission of a request.
28. Provides that nothing in a particular section of this bill limits further liability for civil
damages resulting from other negligent conduct or intentional misconduct by any person.
Provides that the penalties in a particular section do not preclude criminal penalties
applicable under any law for conduct inconsistent with the provisions of this bill.
29. Provides that nothing in this bill 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.
Provides that actions taken in accordance with this bill shall not, for any purpose, constitute
suicide, assisted suicide, mercy killing, homicide, or elder abuse under the law.
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30. Requires DPH, in consultation with DSS, to adopt regulations establishing reporting
requirements for physicians and pharmacists to determine utilization and compliance with
this bill.
31. Requires the information collected under 30) 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.
32. Requires DPH to provide an annual compliance and utilization statistical report aggregated
by age, gender, race, ethnicity, and primary language spoken at home and other data
determined relevant, and requires the report to be made public 30 days upon completion.
33. Requires a person who has custody or control of any unused aid in dying medication to
personally deliver the unused medication to the nearest qualified facility that properly
disposes of controlled substances, or if none is available, dispose of it by lawful means.
34. Requires any governmental entity that incurs costs resulting from a qualified individual
terminating his or her life in a public place to have a claim against the estate of the qualified
individual to recover those costs and reasonable attorney fees.
35. Establishes legislative findings and declarations that any limitation in this bill to public
access to personally identifiable patient data is necessary to protect the privacy rights of the
patient and his or her family, the interests of protecting the privacy rights of the patient and
his or her family in this situation strongly outweigh the public interest in having access to
personally identifiable data relating to services, and the public statistical report is sufficient to
satisfy the public’s right to access.
36. Makes provisions of this bill severable if any provision is held invalid.
FISCAL EFFECT: This bill has not been analyzed by a fiscal committee.
COMMENTS:
1. Author’s statement. According to the authors, SB 128, the End of Life Option Act would
give qualified, terminally ill patients in California, 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. By giving these patients the legal right to ask for and receive a lethal
prescription from his/her physician, SB 128 would provide one more option to the number of
options one has when faced with the end of life. Furthermore, there are provisions to
safeguard patients and to allow voluntary participation by physicians, pharmacists and
healthcare facilities. This medical practice is already recognized in five other states.
Terminally ill Californians 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.
2. Other States. According to the National Conference of State Legislatures, four states
currently allow a person to request medication to end one’s life, including: Montana,
Oregon, Vermont, and Washington. Montana’s authorization was determined in the 2008
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case of Baxter v. State of Montana. In January 2014, New Mexico’s authorization was
determined in Morris v. New Mexico, however the New Mexico Attorney General has
appealed the district court’s ruling. According to the Albuquerque Journal News, a decision
is not expected for several months. Oregon, Vermont and Washington have authorized the
practice in statute, by voter initiative in Oregon (passed in 1994 and enacted in 1997) and
Washington (in 2008). In 2013, Vermont passed legislation to authorize physician aid in
dying. Arkansas and Idaho have enacted laws which specifically prohibit physician aid in
dying.
3. Other Countries. Belgium, the Netherlands, Luxembourg, Switzerland and, beginning next
year, Canada, allow physician aid in dying. The Netherlands and Belgium also allow
euthanasia (medication administered by a physician). Belgium extended its law in 2014 to
include children of any age living with terminal illness. In the Netherlands, the law is not
available to children under 12 years old and for teenagers, the law requires parental consent.
4. Oregon Data. According to the Oregon Public Health Division 2013 report, from 1998 to
2013, 1,173 were prescribed aid with dying medication and 752 deaths occurred as a result of
ingesting prescribed medications. From 1998 to 2013 the gender break down of those who
died from ingesting a lethal dose of medication was 52 percent male and 48 percent female.
Less than 32 percent of the individuals who ingested the medication were between ages 1864. Almost 70 percent were over aged 65. The race breakdown was white (97 percent),
African American (.1 percent), American Indian (.3 percent), Asian (1.1 percent), Pacific
Islander (.1 percent), other (.1 percent), two or more races (.3 percent), and Hispanic (.7
percent). Over 46 percent of those who ingested the medication were married and the
remaining 64 percent were widowed, never married, divorced, or status was unknown (three
individuals). Less than 28 percent of those who ingested the medication had a high school
education or less and 72 percent had some college or higher education levels (five individuals
had unknown status). Ninety percent of those who ingested the medication were enrolled in
hospice. Sixty-three percent had private insurance, 35 percent had Medicare, Medicaid or
other governmental insurance, and less than two percent were uninsured (35 individuals had
unknown status). Almost 80 percent of those who ingested the medication had malignant
neoplasms, seven percent had Amyotrophic lateral sclerosis, five percent had chronic lower
respiratory disease, two percent had heart disease, one percent had HIV/AIDS and six
percent had other illnesses. Six percent of those who ingested the medication were referred
for psychiatric evaluation. Ninety-four informed their family of their decision. Ninety-five
percent died at home, four percent died in long-term care, and .1 percent died in the hospital.
Ninety-one percent of those who ingested the medication were concerned about loss of
autonomy, 89 percent were concerned about being less able to engage in activities that make
life enjoyable, 81 percent were concerned about loss of dignity, 50 percent were concerned
about losing bodily function, 40 percent were concerned about being a burden on family,
friends or caregivers, 23 percent were concerned about inadequate pain control, and three
percent were concerned about financial implications of treatment. There were 22
complications of regurgitation reported and six individuals regained consciousness after
ingesting the medications. A range of between 15 and 1,009 days elapsed from the first
request for medication and death.
5. Brittany Maynard. According to Compassion and Choices, a nonprofit that works to
expand end of life choices, Brittany Maynard was a California native with a terminal brain
cancer diagnosis who moved to Oregon to access its death with dignity law. Brittany
Maynard died in Oregon after taking aid in dying medication on November 1, 2014. In the
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final weeks of her life, Ms. Maynard partnered with Compassion and Choices to launch a
campaign to make aid in dying an open and accessible medical practice in California and
throughout the country. According to Brittany Maynard, as published on CNN Opinion
Tuesday, October 7, 2014, “Because the rest of my body is young and healthy, I am likely to
physically hang on for a long time even though cancer is eating my mind. I probably would
have suffered in hospice care for weeks or even months. And my family would have had to
watch that.” After moving to Oregon with her family, establishing the residency
requirements, and finding new physicians, Ms. Maynard obtained aid in dying medication.
“Now that I’ve had the prescription filled and it’s in my possession, I have experienced a
tremendous sense of relief. And if I decide to change my mind about taking the medication, I
will not take it…..When my suffering becomes too great, I can say to all those I love, I love
you; come be by my side, and come say goodbye as I pass into whatever’s next.”
6. Seattle Program. According to an April 11, 2013, New England Journal of Medicine
article, Seattle Cancer Care Alliance established a physician aid in dying program at a
comprehensive cancer center in Seattle that serves the Pacific Northwest. A total of 114
patients inquired about the program between March 5, 2009, and December 31, 2011. Of
these, 44 (38.6 percent) did not pursue the program, and 30 (26.3 percent) initiated the
process but either elected not to continue or died before completion. Of the 40 participants
who, after counseling and upon request, received a prescription for a lethal dose of
secobarbital (35.1 percent of the 114 patients who inquired about the program), all died, 24
after medication ingestion (60 percent of those obtaining prescriptions). The participants at
the center accounted for 15.7 percent of all participants in the program in Washington (255
persons) and were typically white, male, and well educated. The most common reasons for
participation were loss of autonomy (97.2 percent), inability to engage in enjoyable activities
(88.9 percent), and loss of dignity (75.0 percent). Eleven participants lived for more than 6
months after prescription receipt. The article concludes, qualitatively, patients and families
were grateful to receive the lethal prescription, whether it was used or not, and overall, the
program has been well accepted by patients and clinicians.
7. Excluded/different provisions comparison with other States.
a. Oregon’s Statute (OR) requires a physician to refer a patient to counseling if he or she
believes the patient is suffering from a psychiatric or psychological disorder or
depression causing impaired judgment. SB 128 requires a physician to refer to
counseling, if appropriate. OR prohibits the medication from being prescribed until
the psychologist or psychiatrist determines that the patient is not suffering from a
psychiatric or psychological disorder or depression causing impaired judgment.
Similar provisions are in Washington’s Statute (WA). There is no similar explicit
prohibition on the prescription until the patient is cleared by the psychiatrist or
psychologist in SB 128.
b. OR requires the attending physician to recommend that the patient notify the next of
kin but also states that the patient’s refusal to notify next of kin is not a reason to deny
the request. Similar provisions are in WA. There is no similar provision in SB 128.
c. OR requires the physician to wait 48 hours from receiving the written request before
writing the prescription. Similar provisions are in WA and Vermont’s Statute (VT).
There is no similar provision in SB 128.
d. OR requires documentation in a patient’s medical record by the attending physician,
and consulting physician, and determinations of the counseling session, if performed.
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Similar provisions are in WA and VT. There is no similar provision in SB 128. This
same requirement existed in AB 374 of 2007.
e. OR requires annual review of a sample of records. WA requires an annual review of
all records. SB 128 says a physician is required to report if DPH requires it through
regulations.
f. OR allows a health care provider to prohibit another provider from participating on
the premises of the prohibiting provider if the policy has been disclosed to the
provider. It also allows for sanctions if the prohibited provider violates the policy.
Similar provisions are in WA. There is no similar provision in SB 128.
8. U.S. End of Life Care. A 2014 publication of the Institute of Medicine (IOM), Dying in
America: Improving quality and Honoring individual preferences near the end of life. the
IOM Committee on Approaching Death: Addressing Key End-of-Life Issues (committee)
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, and too few clinicians in 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 committee believes 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.
9. Death Certificate. According to the MBC newsletter (Summer 2014), physicians are
advised not to put mechanisms of death on the death certificate (such as cardiopulmonary
arrest) because mechanisms are not the cause of death. Instead, the newsletter suggests the
physician use the condition that immediately led to the death, for example, Arteriosclerotic
Cardiovascular Disease or Hypertensive Health Disease. If the decedent has significant
medical history, which did not cause the death, but likely contributed to the poor health and
subsequent death, the death certificate allows those conditions to be listed. A physician must
attest death certificates within 15 hours. Any person required to fill out a certificate of death
who fails, neglects, or refuses to perform such duty is guilty of a misdemeanor.
10. Evidence of Problems? An article published in the Michigan Law Review in June of 2008,
referenced by opponents of the bill, examines the Oregon Death with Dignity Act, drawing
from case studies and information provided by doctors, families and other care givers. The
article concludes that seemingly reasonable safeguards for the care and protection of
terminally ill patients written into the Oregon law are being circumvented. The article
indicates that the Oregon Public Health Division does not collect the information it would
need to effectively monitor the law. The article draws on six cases (four with independent
information from more than one source, and one with information provided by an opponent
of aid in dying and another with information provided by a proponent). The case studies
present examples of situations where a prescribing physician regretted not discussing the case
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with the patient’s regular physician, a psychologist cleared a patient based on the results of a
test administered by her family and without seeing the patient, a physician declined a request,
did not refer the patient to counseling and the patient committed suicide the next day, a
psychological evaluation suggested possible coercion by the family but aid in dying
medication was prescribed, aid in dying was prescribed after a patient made a request to two
different physicians instead of two requests to the same physician, and a patient with a
history of depressive disorder may have delayed aid in dying by a year and reconnected with
family because of support provided by a volunteer. Another document provided by the
Disability Rights Education and Defense Fund describes a situation where a patient’s
caretaker was prosecuted by federal investigators for real estate fraud and mistreatment of the
patient after his death by physician aid in dying. This document also describes a situation
where a family member helped a patient take the medication rather than through selfadministration.
11. Role of Pharmacist. According to a 2011 article in the American Journal of Health System
Pharmacists, based on experience in Washington and Oregon, physicians issuing
prescriptions to be dispensed at a pharmacy must notify the pharmacist in advance. The
physician must either deliver the written prescription personally or mail it to the pharmacist.
Once the prescription is filled, it may be obtained by the physician, the patient, or an agent of
the patient (e.g., family member). Oral medication counseling must be offered to the patient
or patient's agent and provided in person, whenever practical, and in a private area; the
pharmacist can offer to provide counseling over the telephone. Secobarbital is the
medication most commonly prescribed for physician assisted suicide, followed by
pentobarbital. The lethal dose prescribed is typically 9 grams of secobarbital in capsules or
10 grams of pentobarbital liquid, to be consumed at one time. The contents of the
secobarbital capsules or the pentobarbital liquid should be mixed with a sweet substance such
as juice to mask the bitter taste. Until the time of use, the medication must be stored out of
reach of children and kept away from others to prevent unintentional overdose or abuse. The
pharmacist or physician should instruct patients to take the lethal dose on an empty stomach
to increase the rate of absorption. The typical dose of pentobarbital as an oral hypnotic for
adults is 100–200 milligrams at bedtime, and that of secobarbital is 100 milligrams orally at
bedtime. Patients receiving the lethal dose of secobarbital or pentobarbital should be
instructed to take an antiemetic (e.g., metoclopramide) about one hour before ingesting the
barbiturate to prevent nausea and vomiting. Cases of vomiting after taking an antiemetic have
been reported; in the event of vomiting after medication ingestion, patients should be
instructed to have a family member contact the attending physician to determine the course
of action. Patients should be instructed that if they decide not to end their life after ingesting
the medication, they must contact emergency medical services to begin lifesaving measures.
12. Unused Medication Disposal. As referenced in the 2011 American Journal of Health
System Pharmacists article, patients need to be informed of appropriate disposal methods in
case the medication is not taken; the Food and Drug Administration provides guidance on
that issue. Secobarbital and pentobarbital are not among the medications recommended for
disposal by flushing, and they should be placed in the household trash after mixing with an
unpalatable substance such as coffee grounds. Unused medications also can be brought to a
drug "take back" program involving law enforcement personnel. Patients are not permitted to
return controlled substance medications to a pharmacy.
SB 128 (Wolk)
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13. Double referral. This bill is double referred. Should it pass out of this committee, it will be
referred to the Senate Committee on Judiciary.
14. Related legislation.
a. SB 19 (Wolk) establishes the Physician Orders for Life Sustaining Treatment
(POLST) registry. SB 19 is currently pending in the Senate Health Committee.
b. SB 149 (Stone), SB 715 (Anderson) and AB 159 (Calderon) permits 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 bill also prohibits 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 and SB 715 are scheduled to be heard in the
Senate Health Committee on April 15, 2015. SB 159 is pending in the Assembly
Health 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 in the Assembly Judiciary
Committee.
15. Prior 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-oflife 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), would have established a Physician Orders for Life Sustaining
Treatment registry at the California Health and Human Services Agency. SB 1357
was held on the Senate Appropriations suspense file.
c. 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 criticallyneeded information in carefully-circumscribed instances.
d. 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.
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e. 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.
f. 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.
g. 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.
h. AB 891 (Alquist), Chapter 658, Statutes of 1999, streamlined and updated the
provisions governing health care decisions for adults without decision-making
capacity. Specifically, this bill repealed the provisions governing durable powers of
attorney for health care and the Natural Death Act, and revised and recast these
provisions as part of a new Health Care
16. Support. Compassion and Choices writes that too many suffer needlessly at the end of life,
too many endure unrelenting pain and other symptoms, and too many turn to violent means at
the end of life when medical aid could help them die peacefully. This bill is modeled after
legislation in Oregon and other states where aid in dying has been proven to be good policy
and safe medical practice. California voters support the medical option of aid in dying by
more than two to one margin (64 percent support compared to 24 percent oppose). Studies
show patients who receive counseling about end of life choices score higher on quality of life
and mood measures than patients who do not. Courts have upheld this right. In 1997, the
United States Court of Appeals for the Ninth Circuit upheld Oregon’s first-in-the-nation
Death With Dignity Act (passed by ballot in 1994). On December 31, 2009, Montana
Supreme Court ruled in a 5-2 vote that terminally ill Montanans have the right to choose aid
in dying under state law. In January 2014, New Mexico Second Judicial District Judge Nan
Nash issued a landmark decision that terminally ill, mentally competent adults have a
fundamental right to aid in dying under the substantive due process clause of the New
Mexico State Constitution. On February 6, 2014, the Canada Supreme Court ruled that
prohibition of assisted dying violates the right to life, liberty and security of the person and is
not in accordance with principles of fundamental justice.
The AIDS Healthcare Foundation writes that 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. The Secular Coalition for California supports the
development of new public policy based on science and reason and indicates that the benefits
of this bill are supported by extensive scientific study and data. They strongly encourage
policymakers to base their decisions regarding this legislation on sound, tested evidence, not
superstition and unsubstantiated fear-mongering. Equality California indicates that this issue
is particularly important to them because of its impact on the lesbian, gay, bisexual, and
SB 128 (Wolk)
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transgender community. The roots of the “death with dignity” movement owe much to
mothers of men dying painfully during the early days of the AIDS epidemic.
Almost one hundred physicians have registered their support for this bill. Many write about
witnessing patients suffer horrifically painful deaths because the standard of care medication
management and surgery is not effective at controlling terminal pain. Pain medication can
cause disabling side effects. One physician writes that providing terminally ill patients with
this humane option is preferable to the desperate and covert self-help practices some patients
are currently forced to employ. Providing this autonomy and choice to the vulnerable and
dying is one of the last comforting things we can do for our fellow humans. Another
physician writes that patients and families have asked for relief from suffering but he has
been unable to provide this which he believes is his role as their physician. A physician and
cancer patient indicates he has urged the California Medical Association (of which he is a
member) to take a neutral position on this bill. He asserts that palliative sedation is a poor
substitute to offer as an alternative, and he would not want to rely on a doctor sedating him
into unconsciousness in preference to having the key to exit in his own possession.
17. Opposition. The California Disability Alliance indicates it has a broad agenda for promoting
health, independence and full community inclusion of persons with disabilities but is
convinced that legalizing physician assisted suicide or euthanasia in the present environment
of increasingly cost-driven health care budgeting decisions will adversely affect their efforts
to achieve these goals and will result in unnecessary deaths among people in poverty, people
with disabilities, and elderly people. California Family Alliance states there is no true way to
protect against undue influence for those who seek to profit from a patient’s early death.
The California Family Alliance writes the true compassionate approach is to provide terminal
patients with a variety of viable life-affirming options, including physical, mental and
emotional support. The California Foundation for Independent Living Centers believes that
people with disabilities and their families will still face more subtle, behind-the-scenes forms
of persuasion coercion. The disability community is convinced that the perception that death
is preferable to living with a disability is still pervasive. The Arc and United Cerebral Palsy
California Collaboration opposes this bill based on a long and shameful history and on recent
experience, people with developmental disabilities and their families simply do not believe
that any regulations and safeguards will actually protect them adequately from being
pressured or even forced into ending their lives prematurely.
The Association of Northern California Oncologists opposes this bill because it is contrary to
a physician’s oath and primary responsibility to do no harm, legalizing physician-assisted
suicide undermines the valuable and overwhelmingly successful work of hospice and pain
and palliative care colleagues, and the legislation is based on a common misunderstanding
that it is easy to determine when a patient is terminal. Hematologists/oncologists are the first
to recognize that it is notoriously difficult for physicians to know when their patients are
terminal. Data from Oregon finds that many patients have been prescribed life-ending
medications and have lived more than a year after the prescription has been filled. The
Agudath Israel of California, a Jewish advocacy group, is concerned because of California’s
diversity and more advanced medical system with many more large and advanced medical
centers that they are not sure the same results would be seen here as in Oregon. The Alliance
of Catholic Health Care (Alliance) indicates that California law already gives every patient
the right to refuse extraordinary end of life treatment. Both the Alliance and the California
Hospital Association are opposed to this bill not allowing sanctions on health care providers
who participate in aid in dying contrary to a hospital’s policy. The Alliance also fears that if
SB 128 (Wolk)
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aid in dying becomes a legal right or “settled law,” it will be extremely difficult to limit it to
a small group of terminal patients. Additionally, the Alliance is concerned that once a patient
obtains a lethal dose of drugs there is no transparency and cites a quote associated with the
Oregon Department of Human Services “…the reporting requirements can only ensure that
the process for obtaining lethal medications complies with the law.” The Alliance states that
we cannot determine whether physician-assisted suicide is being practiced outside the
framework of the Death with Dignity Act. The Alliance also refers to a Yale study of the
Netherlands that indicated in 18 percent of the cases there were complications and the
physician intervened and ended the life of the patient. The Alliance also raises concerns that
there is no definition of active euthanasia. Several thousands of individuals registered their
opposition including some physicians. One physician writes that the bill wrongly assumes all
physicians are ideal moral agents. Physicians are under increasing stress, workloads and cost
pressures. It takes no great skill and very little time to write a lethal prescription and it takes
consummate skill and lots of effort to provide good end of life care.
18. Concerns. The California Medical Association expresses concerns that physician assisted
suicide would undermine trust in the physician-patient relationship, as patients may fear or
suspect that a physician will steer them toward physician assisted suicide rather than pursing
a more difficult course of treatment. CMA is also concerned that some patients may feel
pressured or coerced to accept physician assisted suicide, particularly if the patient feels
obligated to relieve their loved ones of the burden of caring for them. CMA writes that the
right to fatal, life-ending medications would become an expectation, and ultimately a duty,
fueled by those members of society whose existence is expensive or otherwise could be
considered burdensome.
19. Policy Comments.
a. Oregon as a Model. Some of the provisions contained in the laws in Oregon,
Washington and Vermont identified in comment 7 could be argued are safeguards
that have contributed to the successful implementation in those states. The authors
may wish to reconsider their inclusion in SB 128.
b. Reporting Agency. SB 128 requires the DPH, in consultation with DSS, to establish
reporting requirements for physicians and pharmacists. As noted at a recent Senate
Budget Subcommittee on Health and Human Services hearing, on March 3, 2015, the
State Auditor notified the Legislature that DPH remains a high-risk agency due to
weakness in program administration and because it has been slow to implement
recommendations, especially those that have a direct impact on public health and
safety. DPH delivers a broad range of public health programs. Some of these
programs complement and support the activities of local health agencies in
controlling environmental hazards, preventing and controlling disease, and providing
health services to populations who have special needs. Others are solely stateoperated programs, such as those that license health care facilities. Given the
challenges at DPH the authors may wish to reconsider giving DPH this reporting
responsibility. Additionally, it is not clear why DSS has been included as a
consulting agency. If DPH remains as the reporting agency, the authors may wish to
consider adding a deadline on when the regulations should be promulgated and when
first report and annual reports are expected. It is also not clear what action DPH can
take if the physicians and pharmacists do not comply with the reporting
requirements.
SB 128 (Wolk)
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c. Hospice. As indicated in the IOM report, hospice is an important approach to
addressing the palliative care needs of patients with limited life expectancy and their
families. For people with a terminal illness or at high risk of dying in the near future,
hospice is a comprehensive, socially supportive, pain-reducing, and comforting
alternative to technologically elaborate, medically centered interventions. In fact, the
director of the Seattle Cancer Care Alliance, Dr. Anthony Back, indicates in a
September 24, 2014, Medscape interview, that hospice is especially for patients who
have the option for dying at home. “Hospice mobilizes all those resources and helps
organize them and helps connect them to the team and the clinic or the hospital.
That’s part of showing patients that we can provide this continuous care that flows
from the hospital to the clinic to the home. So palliative care and hospice are
linchpins. It would be weird to have some kind of protocol for assisted suicide if you
didn’t have really good palliative care in place." Vermont requires the physician to
record in the patient’s medical record an attestation that the patient was enrolled in
hospice care at the time of the patient’s oral and written requests for medication to
hasten his or her death or that the physician informed the patient of all feasible endof-life services. The authors may wish to consider a requirement that the patient is
receiving either hospice or palliative care at the time of the request for aid in dying
medication. This would ensure that the patient has access to pain management and
emotional support at the time of the request.
d. Model notice. Opponents have referred to two Oregon patients with terminal cancer
who were sent notifications by an Oregon health plan (the equivalent of a Medi-Cal
managed care plan) that denied cancer treatment but offered coverage for end-of-life
care including physician aid in dying. The authors may wish to consider amendments
to ensure that notifications from health plans regarding aid in dying coverage are
carefully crafted to not convey a message that a person may interpret as being
pressured by the plan to end his or her life earlier than through the natural progression
of the terminal illness. This could be accomplished by the development of a focus
tested model notice by health insurance regulators in consultation with interested
stakeholders.
20. Technical and clarifying amendments.
a. The bill requires an interpreter to be qualified as described in subparagraph (H) of
paragraph (2) of subdivision (c) of Section 1300.67.04 of Title 28 of the California
Code of Regulations. It is not clear what qualifications are being required. The
regulation refers to health plan standards. Since aid in dying is not guaranteed to be a
covered benefit, it is not appropriate to reference the plan standards. However, the
regulation also references standards promulgated by the California Healthcare
Interpreters Association or the National Council on Interpreting in Healthcare. The
authors may wish to amend this bill to reference these standards directly.
b. Opponents have raised a concern that the law could be interpreted to allow a patient
to get around the two requests at least 15 days apart requirement. The concern is that
if a physician declines the request, upon requesting consideration by a second
physician, the two requests within 15 days would be met even though the two
requests were not made to the same provider. The authors may wish to make it clear
that the requirements under 443.3 must be made to the same attending physician.
SB 128 (Wolk)
SUPPORT AND OPPOSITION:
Support:
AIDS Healthcare Foundation
Alameda County Board of Supervisors
American Federation of State, County and Municipal Employees, AFL-CIO
American Medical Student Association
American Medical Women’s Association
California Council of Churches IMPACT
California Primary Care Association
California Senior Legislature
Compassion & Choices
Conference of California Bar Associations
Congress of California Seniors
County of Santa Cruz, Board of Supervisors
Death with Dignity National Center
Democratic Party of Orange County
Democratic Party of Santa Barbara County
Equality California
Gay and Lesbian Medical Association
Gray Panthers of Long Beach
Hemlock Society of San Diego
I Care for Your Loved One: Compassionate Senior Services
Insurance Commissioner Dave Jones
Laguna Woods Democratic Club
Lompoc Valley Democratic Club
National Center for Lesbian Rights
National Council of Jewish Women California
Older Women’s League of San Francisco
Progressive Democrats of America, California
San Francisco for Democracy
San Mateo County Democracy for America
Secular Coalition for California
Sonoma County Democratic Party
Trinity County Progressives
U.S. Senator Dianne Feinstein
Thousands of individuals
Oppose:
Agudath Israel of California
Alliance of Catholic Health Care
Arc and United Cerebral Palsy California Collaboration
Association of Northern California Oncologists
Autistic Self-Advocacy Network
California Catholic Conference
California Disability Alliance
California Family Alliance
Page 17 of 18
SB 128 (Wolk)
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California Foundation for Independent Living Centers
California Hospital Association
California Nurses for Ethical Standards
California ProLife Council
Calvary Chapel Golden Springs
Capitol Resource Institute
Concerned Women for America
Dignity Health
Disability Rights Education and Defense Fund
Faith and Public Policy (Ministry of Calvary Chapel Chino Hills)
International Life Services
Life Legal Defense Foundation
Life Priority Network
Medical Oncology Association of Southern California
Mission Hospital (St. Joseph Health)
Mission Hospital Laguna Beach
National Right to Life Council
North Orange County ProLife Chapter
Pajaro Valley Senior Coalition
Petaluma Valley Hospital
Providence Health and Services
Queen of the Valley Medical Center
Redwood Memorial Hospital
San Joaquin ProLife Council
Santa Rosa Memorial Hospital
Scholl Institute of Bioethics
Sisters of Social Service of Los Angeles
St. Joseph Hospital, Eureka
St. Joseph Hospital, Orange
St. Mary Medical Center
Thousands of individuals
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