BILL ANALYSIS Ó
SENATE COMMITTEE ON HEALTH
Senator Ed Hernandez, O.D., Chair
BILL NO: AB 2139
AUTHOR: Eggman
AMENDED: May 13, 2014
HEARING DATE: June 18, 2014
CONSULTANT: Boughton
SUBJECT : End-of-life care: patient notification.
SUMMARY : Requires a health care provider to notify a patient
diagnosed with a terminal illness, or when applicable, the right
of another person authorized to make health care decisions for
the patient, of his or her right to comprehensive information
and counseling regarding legal end-of-life options.
Existing law:
1.Establishes the Right to Know End of Life Act of 2008, which
requires, when a health care provider makes a diagnosis that a
patient has a terminal illness, the health care provider to,
upon the patient's request, provide the patient with
comprehensive information and counseling regarding legal
end-of-life care options.
2.Authorizes, when a terminally ill patient is in a health
facility, the health care provider, or medical director of the
health facility if the patient's health care provider is not
available, to refer the patient to a hospice provider or
private or public agencies and community-based organizations
that specialize in end-of-life care case management and
consultation to receive comprehensive information and
counseling regarding legal end-of-life care options.
3.Requires, if the patient indicates a desire to receive
end-of-life care information and counseling, the comprehensive
information to include, but not be limited to, the following:
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;
Continued---
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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, including, but
not limited to, adequate pain medication, treatment of
nausea, palliative chemotherapy, relief of shortness
of breath and fatigue, and other clinical treatments
useful when a patient is actively dying; and,
f. The patient's right to give individual health
care instruction pursuant to existing law, 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.
4.Authorizes the information described in 3) above to be in
writing and health care providers to utilize information from
organizations specializing in end-of-life care that provide
information on factsheets and Internet Web sites to convey the
information.
5.Authorizes counseling to include, but is not limited to,
discussions about the outcomes for the patient and his or her
family, based on the interest of the patient, and to occur
over a series of meetings with the health care provider or
others who may be providing the information and counseling
based on the patient's needs.
6.Authorizes the information and counseling sessions to include
a discussion of treatment options in a manner that the patient
and his or her family can easily understand. Requires, if the
patient requests information on the costs of treatment
options, including the availability of insurance and
eligibility of the patient for coverage, the patient to be
referred to the appropriate entity for that information.
7.Requires, if a health care provider does not wish to comply
with his or her patient's request for information on
end-of-life options, the health care provider to refer or
transfer a patient to another health care provider that shall
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provide the requested information, and provide the patient
with information on procedures to transfer to another health
care provider that shall provide the requested information.
8.Authorizes an adult having capacity to give an individual oral
or written health care instruction, which may be limited to
take effect only if a specified condition arises.
9.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.
10.Defines health care decisions as a decision made by a patient
or patient's agent, conservator, or surrogate, regarding a
patient's health care, including the selection and discharge
of health care providers and institutions, approval or
disapproval of diagnostic tests, surgical procedures, programs
of medication, and directions to provide, withhold, or
withdraw artificial nutrition and hydration and all other
forms of health care, including cardiopulmonary resuscitation.
This bill:
1.Requires a health care provider to notify a patient diagnosed
with a terminal illness of his or her right to, or when
applicable, the right of another person authorized to make
health care decisions for the patient, to comprehensive
information and counseling regarding legal end-of-life
options. Authorizes this notification to be provided at the
time of diagnosis or at a subsequent visit.
2.Authorizes the information and counseling sessions to include
a discussion of treatment options in a culturally sensitive
manner that the patient and his or her family, or another
person authorized to make health care decisions for the
patient, can easily understand.
3.Clarifies that the notification in 1) above is not required if
the patient or other person authorized to make health care
decisions for the patient has already received the
notification.
4.Updates existing law to include another person authorized to
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make health care decisions for the patient, as specified, as a
proxy for the patient with regard to end-of-life care
information and counseling.
FISCAL EFFECT : This bill has been keyed non-fiscal.
PRIOR VOTES :
Assembly Health: 13- 5
Assembly Floor: 46- 28
COMMENTS :
1.Author's statement. According to the author, this bill simply
seeks to ensure that patients who have been diagnosed with a
terminal illness are notified of their right under existing
law to request comprehensive information and counseling about
end-of-life treatment options. Increasing the awareness of
this right will help terminally ill patients, their families,
and their physicians make informed treatment decisions and
better ensure the wishes of the patients are fulfilled.
Research - including surveys conducted by the California
HealthCare Foundation (CHCF), indicate that a wide discrepancy
exists between the end-of-life care that individuals say they
want and what - in practice - the terminally ill actually
receive. While an overwhelming number of Californian's (70
percent in one CHCF survey) indicate a desire to die at home
and only 7 percent say they would like all possible care to
prolong life, the reality is quite different. Individuals
frequently receive aggressive treatment or life-sustaining
care in the last few weeks of life and are nearly as likely to
spend their last month in a hospital as they are at home. This
discrepancy is attributable to a variety of factors, including
individuals not making their wishes clear in advance and a
lack of familiarity with what options exist outside of
aggressive treatment. Existing law 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 about legal end-of-life options,
upon the request of the patient. This bill represents a
modest - but essential - step to ensure patients are notified
of this right.
2.Death and Dying in California. A February 2012 snapshot
published by CHCF indicates Californians say the most
important factors at the end of their life are: 1) Making sure
their family is not burdened financially by the costs of care
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(67 percent say this is extremely important) and 2) Being
comfortable and without pain (66 percent). Two-thirds of
Californians say they would prefer a natural death if they
were severely ill, while only 7 percent say they would want
all possible care to prolong life. Almost 80 percent say they
definitely or probably would like to talk with a doctor about
end-of-life wishes, but only 7 percent have had a doctor speak
with them about it. Over 80 percent think it would be a very
or somewhat good idea for doctors to be paid for such
discussions. Seventy percent of Californians say they would
prefer to die at home. However, of deaths in California in
2009, 32 percent occurred at home, 42 percent in a hospital,
and 18 percent in a nursing home. Compared to the nation as a
whole, California is trending toward providing more inpatient
care and more intensive care in the last six months of life.
Another CHCF study by the Dartmouth Atlas Project found in
some regions in California, Medicare beneficiaries spent twice
as many days in the hospital in their last six months of life
compared to those living in other parts of the state, and
patients spent more than three times as many days in an
intensive care unit (ICU). Aggressive care of the dying has
not been found to benefit patients medically, and is known to
be at odds with Californians' desires about end-of-life care.
The Study to Understand Prognoses and Preferences for Outcomes
and Risks of Treatment (SUPPORT) found that doctors rarely
talked to patients about their preferences for end-of-life
care, and less than half of physicians knew which patients
preferred to avoid cardiopulmonary resuscitation. A follow-up
study using SUPPORT data showed that among a sample of 479
patients, 391 expressed a preference to die at home but more
than half died in a hospital. The percentage of patients in
their last six months of life seeing 10 or more physicians
increased on average between 2003 and 2010 but varied
considerably from region to region. Santa Cruz and San Mateo
counties had slight decreases from 2007 to 2010 and Stockton
had the highest increase in the state. Medicare beneficiaries
with chronic disease were significantly more likely to be
treated by 10 or more doctors in the last six months of life
in 2010 than they were in 2003.
3.End-of-Life Cancer Care in California. According to an August
2013 report by CHCF, compared to the country as a whole, in
2010 California's patients with advanced cancer were more
likely to die in the hospital, spend time in an ICU, receive
life-support procedures in the last month of life, and receive
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chemotherapy in the last two weeks of life. Some regions saw a
steep increase in the percentage of patients receiving
life-sustaining procedures in the last month of life, while
others saw no change or a decrease. In 2010, nearly one-third
of Californians with poor-prognosis cancer spent their last
days in hospitals and ICUs, a decline of seven percent
compared with 2003-07 but still 20 percent higher than the
national average. More than 10 percent of Californians with
poor-prognosis cancer who were in the last month of life
received advanced life-support procedures in 2010. About six
percent of cancer patients were given chemotherapy in the last
two weeks of life in 2010; in some regions of the state and in
some hospitals, the rate exceeded 10 percent. The percentage
of dying cancer patients in California who received hospice
care increased slightly between 2003-07 and 2010, but remained
below the national average. In some California hospitals,
referral to hospice care occurred so close to the day of death
that it was unlikely to have provided much assistance or
comfort to patients.
4.Double referral. This bill is double referred. Should it
pass out of this committee, it will be referred to the Senate
Judiciary Committee.
5.Related legislation. SB 1357 (Wolk) would establish 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.
SB 1004 (Hernandez) would require the Department of Health
Care Services to request a federal Medicaid waiver to conduct
a pilot project and evaluate whether an adult pediatric
palliative care benefit should be offered in the Medi-Cal
program. SB 1004 is set for hearing on June 20, 2012 in
Assembly Health Committee.
6.Prior legislation. AB 2747 (Berg), Chapter 683, Statutes of
2008, seeks to facilitate meaningful 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.
AB 891 (Alquist), Chapter 658, Statutes of 1999, streamlined
and updated the provisions governing health care decisions for
adults without decisionmaking capacity. Specifically, this
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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 Decisions Law.
8. Support. Compassion & Choices believes this bill improves
the existing California Right to Know End of Life Options Act
in a few reasonable, simple ways. Having the physician notify
a patient improves the law because a provider might otherwise
be reluctant to provide such notice. According to the
American Cancer Society Cancer Action Network (ACS CAN)
learning that a cancer is advanced and that treatment is not
helping is more than any person should be forced to endure but
it is at this time that information about end of life options
becomes most important. This bill would ensure that all
California patients with a terminal diagnosis or their
caretakers are aware of their right to comprehensive
information or counseling about their end-of-life options as
the standard of care. The California Commission on Aging
writes that by offering to provide the information, the
physician opens the door for an important conversation that
can strengthen the patient's ability to make wise decisions at
such a crucial time.
9.Opposition. The Association of Northern California
Oncologists and the Medical Oncology Association of Southern
California 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. This
bill undoes a carefully negotiated agreement codified in AB
2747 of 2008. There is no evidence that this current system
is not working, or would need to be changed.
10.Opposition unless Amended. The California Medical
Association (CMA) writes that physicians support informing and
educating patients regarding end-of-life issues, but generally
are opposed to legislation mandating the specifics of how this
occurs within the physician-patient relationship given the
varying complexities particular to each individual patient and
each individual diagnosis. CMA requests that this bill be
amended to clarify that the notification would not be required
at these times if deemed inappropriate by a physician. This
amendment would ensure there is flexibility within the statute
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to allow a physician to use their professional assessment of
that patient's physical, emotional, and psychosocial needs to
make sure these conversations occur without causing undue
emotional distress to the patient.
SUPPORT AND OPPOSITION :
Support: American Cancer Society Cancer Action Network
California Commission on Aging
Compassion & Choices
National Association of Social Workers, California
Chapter
Oppose: Association of Northern California Oncologists
California Medical Association (unless amended)
Medical Oncology Association of Southern California
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