BILL ANALYSIS �
AB 2139
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Date of Hearing: May 6, 2014
ASSEMBLY COMMITTEE ON HEALTH
Richard Pan, Chair
AB 2139 (Eggman) - As Amended: April 2, 2014
SUBJECT : End-of-life care: patient notification.
SUMMARY : Requires health care providers, when they make a
diagnosis that a patient has a terminal illness, to notify the
patient of his or her right under current law to comprehensive
information and counseling regarding legal end-of-life options.
Specifically, this bill :
1)Requires a health care provider, when he or she makes a
terminal diagnosis, to notify the patient of his or her right
to, or when applicable, the agent of the patient's right to,
comprehensive information and counseling regarding legal
end-of-life options.
2)Expands current law that gives patients the right to receive
comprehensive information and counseling to also allow the
patient's agent to receive this information and counseling.
Specifies that an agent, for these purposes, is an individual
designated in a power of attorney for health care, as
specified, to make a health care decision for the patient who
has been diagnosed with a terminal illness, regardless of
whether the person is known as an agent or attorney in fact,
or by some other term.
3)Specifies that a terminal illness, for the purposes of this
bill and current law about end-of-life counseling, is a
medical condition resulting in a prognosis of a life
expectancy of one year or less, if the disease follows its
normal course.
EXISTING LAW :
1) Requires a health care provider, when he or she makes a
diagnosis that a patient has a terminal illness, to provide
the patient comprehensive information and counseling
regarding legal end-of-life options, upon request.
Requires the provider, if he or she does not wish to comply
with a patient's request, to refer the patient to another
provider who will. Defines "health care provider," for
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these purposes, as an attending physician and surgeon or a
nurse practitioner or physician assistant, as specified.
2) Requires comprehensive information about end-of-life
options to include: a) hospice care at home or in a health
care setting; b) a prognosis with and without the
continuation of disease-targeted treatment; c) the
patient's right to refusal of or withdrawal from
life-sustaining treatment; d) the patient's right to
continue to pursue disease-targeted treatment, with or
without concurrent palliative care; e) the patient's right
to comprehensive pain and symptom management at the end of
life; and f) the patient's right to give individual health
care instructions under current law, including advance
health care directives.
3) Allows for the referral of a patient in a health
facility to a hospice provider, a private or public agency,
or a community-based organization that specializes in
end-of-life care case management and consultation for
comprehensive information and counseling.
4) Defines advanced health care directive or advance
directive to mean either an individual health care
instruction or a power of attorney for health care.
Establishes a process and form for an individual to give
instructions about health care decision making and
designating an agent to make decisions on his or her
behalf.
5) Establishes the Physician Orders for Life Sustaining
Treatment (POLST) form, which directs a health care
provider regarding resuscitative and life-sustaining
measures, and requires that it be explained by a health
care provider. Also requires a health care provider to
treat an individual in accordance with a POLST form.
6) Requires all physicians to complete a mandatory
continuing education course in the subjects of pain
management and the treatment of terminally ill and dying
patients.
7) For the purpose of various provisions of law, defines
"terminal disease" and "terminal illness" in various ways:
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a) For the purpose of law governing residential care
facilities for persons with chronic life-threatening
illness, defines "terminal disease" or "terminal illness"
to mean a medical condition resulting from a prognosis of a
life expectancy of one year or less, if the disease follows
its normal course.
b) For the purpose of law governing hospice licensure,
defines "terminal disease" or "terminal illness" to mean a
medical condition resulting in a prognosis of life of one
year or less, if the disease follows its natural course.
c) For the purpose of coverage of continuity of care by
health insurance, defines "terminal illness" as an
incurable or irreversible condition that has a high
probability of causing death within one year or less.
d) For the purpose of law governing licensing of congregate
living health facilities, defines terminal illness to apply
if an individual has a life expectancy of six months or
less as stated in writing by his or her attending physician
and surgeon.
FISCAL EFFECT : None
COMMENTS :
1)PURPOSE OF THIS BILL . The author states that the need for
this bill arises from the discrepancy between the care that
most Californians prefer at the end of life and that which
they are receiving. The author cites three reports from 2012
and 2013 prepared by the California HealthCare Foundation
(CHCF) that raise serious concerns with the care Californians
receive at the end of life. One report provides evidence that
most Californians would prefer to die at home, avoid pain, and
be comfortable as they approach the end of life. However, an
additional study finds great disparity in end-of-life care in
California across regions and institutions, with California,
compared to the nation as a whole, trending toward providing
more inpatient care and more intensive care in the last six
months of life. Similarly, in a third study specific to
cancer care, CHCF finds that, compared to the country as a
whole, California's patients with advanced cancer are more
likely to die in the hospital, spend time in an intensive care
unit (or ICU), and receive aggressive life-saving measures in
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the final weeks of life. Finally, while 80% of Californians
indicate they would definitely or probably would like to talk
with a doctor about end-of-life care, only about 7% have had
these important conversations.
The author writes that these concerns have persisted despite the
passage of AB 2747 (Berg), Chapter 683, Statutes of 2008,
which gives patients with a terminal diagnosis the right to be
informed, upon request, about their legal end-of-life care
options. The author indicates this bill would ensure that
patients with a terminal illness are notified about this
right.
2)BACKGROUND . A 2008 study found that end-of-life discussions
are associated with less aggressive medical care near death
and earlier hospice referrals, and that aggressive care is
associated with worse patient quality of life and worse
bereavement adjustment for family members.<1> A 2013 report
by CHCF notes that although the use of palliative and hospice
care has increased over the past 25 years, problems remain in
making sure end-of-life treatment is aligned with patient
wishes. The report finds that there are still barriers to
conversations about end-of-life care between clinicians,
patients, and families, including lack of training for
physicians and other caregivers and lack of payment for
physicians to spend time in such discussions.
3)HOSPICE AND PALLIATIVE CARE . Palliative care is medical care
that focuses on providing comfort to patients and their loved
ones without respect to disease or prognosis. Palliative care
is not restricted to those who are dying or enrolled in
hospice programs, and can be provided concurrently with
curative therapy and other medical treatments. Palliative
care can be provided across inpatient and outpatient settings,
including homes, hospitals, and nursing homes.
Hospice care is a specialized form of interdisciplinary health
care that is designed to provide palliative care, alleviate
the physical, emotional, social, and spiritual discomforts of
an individual who is experiencing the last phases of life due
--------------------------
<1> Wright, Alexi A., Baohui Zhang, Alaka Ray, Jennifer W. Mack,
Elizabeth Trice, Tracy Balboni, Susan L. Mitchell et al.
"Associations between end-of-life discussions, patient mental
health, medical care near death, and caregiver bereavement
adjustment." JAMA 300, no. 14 (2008): 1665-1673.
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to the existence of a terminal illness, and provide supportive
care to the primary caregiver as well as to the family of the
hospice patient.
4)MEDICARE REIMBURSEMENT . Medicare fee-for-service reimburses
for an Initial Preventive Physical Examination (IPPE, also
known as a Welcome to Medicare Visit) provided during an
individual's first 12 months of Medicare Part B coverage. The
IPPE is required to include various services. Since 2009,
these services have included end-of-life planning, upon
agreement with the individual. End-of-life planning means
verbal or written information about the ability to prepare an
advance directive and whether the physician is willing to
follow the individual's advance directive wishes.
Medicare only covers end-of-life planning in the IPPE, not in
annual wellness visits. Federal regulations briefly added
end-of-life planning to the annual wellness visit in 2010 in
response to the requests of health care providers and others,
based upon a number of recent research studies and the
inclusion in the IPPE benefit. However, Centers for Medicare
and Medicaid Services rescinded this coverage in January 2011,
indicating that it had not had the opportunity to consider
prior to the issuance of the final rule the wide range of
views on this subject held by a broad range of stakeholders
(including members of Congress and those who were involved
with this provision during the debate on the Patient
Protection and Affordable Care Act).
Medicare also covers hospice benefits if an individual's
attending physician and the hospice's medical director certify
that the individual is terminally ill and has six months or
less to live if the illness runs its normal course. To
receive hospice care, a beneficiary must sign a statement
choosing hospice care instead of other Medicare-covered
benefits to treat the terminal illness.
5)SUPPORT . California Advocates for Nursing Home Reform
(CANHR), in support, writes that people with terminal
illnesses are often unprepared for end-of-life decision making
and consequently receive treatment that is not consistent with
their wishes. CANHR writes that this bill will ensure that
patients are offered an opportunity for patients to have a
conversation with their physicians about the course of a
terminal disease and the full range of expected treatment
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options. The California Commission on Aging writes that while
current law does nothing to prevent a terminally ill patient
from obtaining important information on end-of-life care,
newly diagnosed patients may not know what to ask for, or even
that such care options exist. By offering to provide the
information, the physician opens the door for an important
conversation that can help the patient make a wise decision at
such a crucial time. Also in support, the Alzheimer's
Foundation of America writes that, in the case of individuals
with dementia, it is imperative that such choices are
presented as early as possible after diagnosis to ensure that
the individual has input into end-of-life choices before the
disease robs them of their ability to make decisions.
Compassion and Choices, in support, writes that this bill will
help patients who might not know end-of-life information is
available upon request, and that providing notification at 12
months will provide a greater amount of time for patients to
receive and consider the comprehensive information.
6)OPPOSITION . The California Medical Association (CMA), in
opposition, asserts that end-of-life issues should definitely
be discussed, but they should be discussed upon the patient's
request, as required by current law, or when the physician
deems it appropriate. CMA writes that, by requiring the
physician to give a patient information about end-of-life
options upon diagnosis, this bill could disrupt the
physician-patient relationship. CMA further argues that this
bill's definitions of the terms "terminal diagnosis" and
"agent" are problematic and could serve to limit when and with
whom a physician can have end-of-life-discussions. The
Medical Oncology Association of Southern California (MOASC),
in opposition, writes that oncologists generally oppose
mandates and similar efforts to legislate the specifics of the
physician-patient relationship because state law cannot
address the complexity and nuance of that relationship,
especially during the end-of-life period. MOASC argues that
interactions with patient should be guided by the physician's
relationship with the patient and the physician's professional
judgment, and should not be subject to external forces that
might interfere with the relationship. MOASC also writes that
this bill undoes the carefully negotiated agreement in AB 2747
of 2008. MOASC writes that the compromise in that bill, which
required counseling upon the patient's request, allows the
physician and patient flexibility to work together to address
the patient's end-of-life needs. Also in opposition, the
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California Right to Life Committee writes that this bill will
not create a more informed and supportive environment but will
make a vulnerable patient more anxious.
7)RELATED LEGISLATION . AB 2452 (Pan) requires the Secretary of
State to establish and maintain a secure website that provides
an electronic reproduction of an advance health care directive
and other specified documents submitted to the registry
system.
8)PREVIOUS LEGISLATION .
a) AB 2747 requires a health care provider, when he or she
makes a diagnosis that a patient has a terminal illness, to
provide the patient comprehensive information and
counseling regarding legal end-of-life options, upon
request.
b) AB 3000 (Wolk), Chapter 266, Statutes of 2008, created
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.
c) AB 891 (Alquist), Chapter 658, Statutes of 2000,
established the Health Care Decisions Law which also
governs advance health care directives.
9)POLICY COMMENTS .
a) There is broad evidence and agreement that conversations
about end-of-life care are beneficial for patients.
However, there is little evidence about what the best point
in time is to notify patients they have a right to have
this discussion. By requiring the notification to happen
upon the diagnosis of a terminal illness, this bill may
create a statutory requirement for a clinical practice that
conflicts with evidence that emerges later.
b) This bill requires notification when a health care
provider diagnoses an individual with a terminal illness.
This could result in repeated notifications, each time a
patient with a terminal illness comes into contact with a
different attending physician. If this occurs, it could
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divert time and resources away from providing a patient
with the curative and/or palliative care they need.
c) This bill defines terminal illness as a medical
condition resulting in a prognosis of a life expectancy of
one year or less, if the disease follows its normal course.
However, prognosis is a matter a clinical judgment; it is
a subjective probability determined by the provider.
Studies have shown that physicians are often not able to
provide an accurate prognosis,<2> and that accuracy
diminishes as the length of time judged increases, a
problem known as the horizon effect. Specifically, the
ability to discriminate between patients who would survive
for one year and those who would not has been found to be
very poor.<3> This bill, by requiring notification for
patients who are judged to have less than one year to live,
may require physicians to notify patients based on a
judgment that has a high probability of being inaccurate,
especially as the prognosis approaches a year.
REGISTERED SUPPORT / OPPOSITION :
Support
Alzheimer's Foundation of America
American Cancer Society Cancer Action Network
California Advocates for Nursing Home Reform
California Commission on Aging
California Hospice and Palliative Care Association
Compassion and Choices Northern California
National Association of Social Workers, California Chapter
Opposition
Association of Northern California Oncologists
California Medical Association
California Right to Life Committee
Medical Oncology Association of Southern California
---------------------------
<2> Glare, Paul, Kiran Virik, Mark Jones, Malcolm Hudson,
Steffen Eychmuller, John Simes, and Nicholas Christakis. "A
systematic review of physicians' survival predictions in
terminally ill cancer patients." BMJ 327, no. 7408 (2003): 195.
<3> Mackillop, William J., and Carol F. Quirt. "Measuring the
accuracy of prognostic judgments in oncology." Journal of
clinical epidemiology 50, no. 1 (1997): 21-29.
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Analysis Prepared by : Ben Russell / HEALTH / (916) 319-2097