BILL ANALYSIS �
SENATE JUDICIARY COMMITTEE
Senator Hannah-Beth Jackson, Chair
2013-2014 Regular Session
AB 2139 (Eggman)
As Amended May 13, 2014
Hearing Date: June 24, 2014
Fiscal: No
Urgency: No
TMW
SUBJECT
End-of-Life Care: Patient Notification
DESCRIPTION
This bill would require a health care provider, when making a
diagnosis that a patient has a terminal illness, to notify the
patient of his or her right to comprehensive information and
counseling regarding legal end-of-life options. This bill would
also include the right of another person authorized to make
health care decisions for the patient to request that
information.
BACKGROUND
In 2008, the Legislature enacted AB 2747 (Berg, Ch. 683, Stats.
2008) to provide patients with a terminal diagnosis the right to
be informed, upon request, about their legal end-of-life care
options. However, a recent study found that "[t]he majority of
cancer patients want to be involved in their medical care, but a
collusion of silence and health care fragmentation results in
far too many patients uninformed of their prognoses and the
option of hospice. Many are informed far too late, resulting in
hospice referral in the last three days of life. This pattern
of care often leaves the dying patient in pain and without the
opportunity to say 'Goodbye, I love you, please carry on. . . ."
(Dartmouth Atlas Project and Lown Institute, Measuring Up?
End-of-Life Cancer Care in California (Aug. 2013) p. 25.)
Another study reported that 82 percent of Californians say it is
important to have end-of-life wishes in writing, only 23 percent
say they have done so, yet 80 percent say they definitely or
(more)
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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. (California Healthcare Foundation, Final Chapter:
Californians' Attitudes and Experiences with Death and Dying
(Feb. 2012), p. 2.)
This bill seeks to expand notification to terminally ill
patients of their rights to end-of-life care information and
would also authorize the person authorized to make health care
decisions for the patient to request that information.
This bill was heard in the Senate Health Committee on June 18,
2014, and passed out on a vote of 6-2.
CHANGES TO EXISTING LAW
Existing law , the Health Care Decisions Law (HCDL), defines
"health care decision" to mean a decision made by a patient or
the patient's agent, conservator, or surrogate, regarding the
patient's health care, including: (1) selection and discharge
of health care providers and institutions; (2) approval or
disapproval of diagnostic tests, surgical procedures, and
programs of medication; and (3) directions to provide, withhold,
or withdraw artificial nutrition and hydration and all other
forms of health care, including cardiopulmonary resuscitation.
(Prob. Code Sec. 4617.)
Existing law provides that a competent adult has a fundamental
right to accept or reject medical treatment, including the right
to withdraw or withhold life-sustaining treatment that may cause
or hasten death. (Cruzan v. Director, Missouri Dept. of Health
(1990) 497 U.S. 261; Thor v. Superior Court (1993) 5 Cal.4th
725; Cobbs v. Grant (1970) 8 Cal.3d 229; Bouvia v. Superior
Court (Glenchur) (1986) 179 Cal.App.3d 1127.)
Existing law provides individuals with a means to declare their
treatment preferences at or near the end-of-life, such as a
request to forgo resuscitative measures, commonly referred to as
a "do not resuscitate" (DNR) request, or an advance health care
directive, which allows an individual to designate an agent to
make health care decisions on their behalf, or to provide
instructions on their preferred method of health care. Existing
law releases a health care provider who, in good faith, honors a
request to forgo resuscitative measures, from criminal, civil,
administrative, and other penalties. (Prob. Code Sec. 4780 et
seq.)
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Existing law requires a health care provider, when making a
diagnosis that a patient has a terminal illness, upon the
patient's request, to provide the patient with comprehensive
information and counseling regarding legal end-of-life care
options, and, 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, may 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. (Health & Saf. Code
Sec. 442.5.)
Existing law requires the comprehensive information to include,
but not be limited to, the following:
hospice care at home or in a health care setting;
a prognosis with and without the continuation of
disease-targeted treatment;
the patient's right to refusal of or withdrawal from
life-sustaining treatment;
the patient's right to continue to pursue disease-targeted
treatment, with or without concurrent palliative care;
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
the patient's right to give individual health care
instruction, which provides the means by which a patient may
provide written health care instruction, such as an advance
health care directive, and the patient's right to appoint a
legally recognized health care decisionmaker. (Health & Saf.
Code Sec. 442.5(a).)
Existing law allows, but does not require, that information to
be in writing and authorizes 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. (Health & Saf. Code Sec. 442.5(b).)
Existing law provides that counseling may include, but not be
limited to, discussions about the outcomes for the patient and
his or her family, based on the interest of the patient.
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Information and counseling may 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.
(Health & Saf. Code Sec. 442.5(c).)
Existing law provides that the information and counseling
sessions may include a discussion of treatment options in a
manner that the patient and his or her family can easily
understand. 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 must be
referred to the appropriate entity for that information.
(Health & Saf. Code Sec. 442.5(d).)
Existing law requires the health care provider, if the health
care provider does not wish to comply with his or her patient's
request for information on end-of-life options, to refer or
transfer a patient to another health care provider that will
provide the requested information and provide the patient with
information on procedures to transfer to another health care
provider that will provide the requested information. (Health &
Saf. Code Sec. 442.7.)
Existing law provides the following definitions:
"actively dying" means the phase of terminal illness when
death is imminent;
"disease-targeted treatment" means treatment directed at the
underlying disease or condition that is intended to alter its
natural history or progression, irrespective of whether or not
a cure is a possibility;
"health care provider" means an attending physician and
surgeon. It also means a nurse practitioner or physician
assistant practicing in accordance with standardized
procedures or protocols developed and approved by the
supervising physician and surgeon and the nurse practitioner
or physician assistant;
"hospice" means 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
to the existence of a terminal disease, and provide supportive
care to the primary caregiver and the family of the hospice
patient, as specified;
"palliative care" means medical treatment, interdisciplinary
care, or consultation provided to a patient or family members,
or both, that has as its primary purpose the prevention of, or
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relief from, suffering and the enhancement of the quality of
life, rather than treatment aimed at investigation and
intervention for the purpose of cure or prolongation of life;
in some cases, disease-targeted treatment may be used in
palliative care; and
"refusal or withdrawal of life-sustaining treatment" means
forgoing treatment or medical procedures that replace or
support an essential bodily function, including, but not
limited to, cardiopulmonary resuscitation, mechanical
ventilation, artificial nutrition and hydration, dialysis, and
any other treatment or discontinuing any or all of those
treatments after they have been used for a reasonable time.
(Prob. Code Sec. 442(a).)
This bill would additionally require a health care provider,
when the health care provider makes a diagnosis that a patient
has a terminal illness, to notify the patient 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.
This bill would authorize that notification to be provided at
the time of diagnosis or at a subsequent visit in which the
provider discusses treatment options with the patient or the
other authorized person.
This bill would additionally authorize another person authorized
to make health care decisions for the patient to request
comprehensive information and counseling regarding legal
end-of-life care options and allow the authorized person to be
referred 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. This bill would also make conforming revisions to
incorporate this additional authorization.
This bill would require the information and counseling session
regarding legal end-of-life care options to include a discussion
of treatment options in a culturally sensitive manner.
This bill would not require a patient to be notified of his or
her right to end-of-life care information and counseling if the
patient has already received the notification by the time the
health care provider makes a diagnosis that a patient has a
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terminal illness.
This bill would define "health care decision" to mean a decision
made by a patient or the patient's agent, conservator, or
surrogate, regarding the patient's health care, including the
following: (1) selection and discharge of health care providers
and institutions; (2) approval or disapproval of diagnostic
tests, surgical procedures, and programs of medication; and (3)
directions to provide, withhold, or withdraw artificial
nutrition and hydration and all other forms of health care,
including cardiopulmonary resuscitation. (Prob. Code Sec.
4617.)
COMMENT
1. Stated need for the bill
The author writes:
This bill arises from the discrepancy between the care that
most Californians prefer at the end of life and that which
they are receiving. Research prepared by the California
HealthCare Foundation (CHCF) raise[s] serious concerns with
the care Californians receive at the end of life. One survey
conducted by CHCF provides evidence that most Californians
would prefer to die at home, avoid pain, and be comfortable as
they approach the end of life. However, a recent CHCF 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, the
[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, and
receive aggressive life-saving measures in the final weeks of
life.
AB 2139 seeks to increase awareness among terminally ill
patients that they have a right to comprehensive counseling
and information about end-of-life care options. Knowledge of
the full-range of care options can help ensure the wishes of
terminally ill patients are fulfilled and help maximize the
quality of life at the end-of-life.
2. Additional disclosure of patient's right to end-of-life
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information
Existing law requires a health care provider, when making a
terminally ill diagnosis to a patient, to provide the patient,
upon the patient's request, with information regarding
end-of-life care options information. This bill would also
require the health care provider, when making the diagnosis, to
notify the patient of his or her rights to receive that
information if they desire.
California Advocates for Nursing Home Reform, in support,
writes:
The unavoidable fact is that all of us will someday die.
Death is inevitable. Coming to terms with a terminal illness
can [be] very complicated, and individuals should have the
right to receive information about the dying process. If
passed, AB 2139 would mean that when a health care provider
makes a diagnosis that a patient has a terminal illness the
health care provider is to notify the patient of his or her
right to receive comprehensive information about counseling,
treatments, and end-of-life care options.
The importance of AB 2139 cannot be understated. When
individuals are unprepared for end-of-life, they may be
subject to treatments that are not consistent with their
wishes. While the ways individuals deal with pending death
vary, CANHR believes that physicians need to have
conversations with their terminally ill patients discussing
the course of their illnesses and the full range of expected
treatment options.
AB 2139 is an important bill that will empower [patients] with
terminal illnesses and guarantee that they will be offered
important information to help them navigate a truly difficult
time.
The author points out that recent studies have shown most
Californians indicate they would definitely or probably would
like to talk with a doctor about end-of-life care, but only
about 7 percent have had these important conversations, despite
the passage of AB 2747 (Berg, Ch. 683, Stats. 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 asserts this bill would ensure that patients with a
terminal illness are notified about this right. Arguably, a
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patient will not request information that he or she does not
know he or she is entitled to receive under the law. Making the
patient aware of their right to this information would further
the purpose of making certain that individuals are aware of
their end-of-life options.
3. Expanding persons authorized to request and receive
end-of-life information
This bill would expand the existing right to receive end-of-life
care information to persons authorized to make health care
decisions for the patient. By expanding the right to request
and receive this information to the person who must make these
decisions on behalf of the patient if he or she is unable to do
so will help ensure that the patient's wishes are carried out.
4. Oppositions' concerns
The opposition argues that end-of-life issues should be
discussed but only upon the patient's request, as required by
current law, or when the physician deems it appropriate. The
opposition also contends that requiring the physician to give a
patient information about end-of-life options upon diagnosis
could disrupt the physician-patient relationship.
The California Medical Association (CMA), opposed unless
amended, contends this bill would create a "one size fits all
approach" that "inserts itself into the private relationship
between a patient and their physician and potentially limits the
patient's ability to comprehend the information, as the patient
may not be emotionally ready to hear about these issues at the
exact times dictated by the bill. In addition, due to potential
cultural sensitivities and religious backgrounds, the patient
could be seriously offended by any notification or discussion of
these issues by their physician. To account for these concerns
and ensure that a physician can use their knowledge, experience,
and connection with his or her patient at such a vulnerable
interval of time in which death approaches, CMA requests that
the 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 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."
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In response, the author contends that this bill simply provides
notice to terminally ill patients about their right, under
existing law, to comprehensive counseling and information
regarding end-of-life treatment options. The author asserts
that this bill does not require patients to ask for the
counseling or information, so the concerns of the opposition are
inconsistent with the facts of the bill. The author agrees that
the judgment of physicians plays a very important role in
determining the best course of care for terminally ill patients;
however, it is not only the judgment of physicians that matter.
The author asserts that this bill seeks to ensure that
terminally ill patients are aware of their rights - so they can
ensure they have all the information they need to determine the
most appropriate course of treatment in conjunction with their
families and doctors.
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
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
HISTORY
Source : Author
Related Pending Legislation : None Known
Prior Legislation : AB 2747 (Berg, Ch. 683, Stats. 2008) See
Background.
Prior Vote :
Senate Committee on Health (Ayes 6, Noes 2)
Assembly Floor (Ayes 46, Noes 28)
Assembly Committee on Health (Ayes 13, Noes 5)
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