The California Right to Know
End-of-Life Options Law
{The following law was enacted
in California in 2008.
The text below is unchanged,
except to make it more
readable on your computer screen.
After the end of the text of
the law,
a detailed critique is offered.}
LEGISLATIVE COUNSEL'S DIGEST AB 2747, Berg. End-of-life care.
Existing law provides for the licensure and regulation of health
facilities
and hospices by the State Department of Public Health.
Existing law provides for the regulation and licensing of physicians
and surgeons
by the Medical Board of California.
This bill would provide that when a health care provider, as
defined,
makes a diagnosis that a patient has a terminal illness,
the
health care provider shall, upon the patient's request,
provide the
patient with comprehensive information and counseling
regarding legal
end-of-life options, as specified,
and provide for the referral or
transfer of a patient, as provided,
if the patient's health care
provider does not wish to comply
with the patient's request for
information on end-of-life options.
THE PEOPLE OF THE STATE OF CALIFORNIA DO ENACT AS FOLLOWS:
SECTION 1. The Legislature finds and declares all of the
following:
(a) Palliative and hospice care are invaluable resources for
terminally ill Californians
in need of comfort and support at the end
of life.
(b) Palliative care and conventional medical treatment for
terminally ill patients
should be thoroughly integrated rather than
viewed as separate entities.
(c) Even though Californians with a prognosis of six months or
less to live
are eligible for hospice care,
nearly two-thirds of them
receive hospice services for less than one month.
(d) Many terminally ill patients benefit from being referred to
hospice care earlier,
where they receive better pain and symptom
management
and have an improved quality of life.
(e) Significant information gaps may exist
between health care
providers and their patients
on end-of-life care options potentially
leading to delays in,
or lack of referrals to, hospice care for
terminally ill patients.
The sharing of important information
regarding specific treatment options
in a timely manner by health
care providers with terminally ill patients
is a key component of
quality end-of-life care.
Information that is helpful to patients and
their families includes, but is not limited to,
the availability of
hospice care,
the efficacy and potential side effects of continued
disease-targeted treatment,
and withholding or withdrawal of
life-sustaining treatments.
(f) Terminally ill and dying patients rely on their health care
providers
to give them timely and informative data.
Research shows a
lack of communication between health care providers
and their
terminally ill patients can cause problems,
including poor
availability of, and lack of clarity regarding,
advance health care
directives and patients' end-of-life care preferences.
This lack of
information and poor adherence to patient choices can result in "bad
deaths"
that cause needless physical and psychological suffering to
patients and their families.
(g) Those problems are complicated by social issues,
such as
cultural and religious pressures on the providers, patients, and
their family members.
A recent survey found that providers that
object to certain practices are less likely than others
to believe
they have an obligation to present all of the options to patients
and
refer patients to other providers, if necessary.
(h) Every medical school in California is required
to include
end-of-life care issues in its curriculum
and every physician in
California is required
to complete continuing education courses in
end-of-life care.
(i) Palliative care is not a one-size-fits-all approach.
Patients
have a range of diseases and respond differently to treatment
options.
A key benefit of palliative care is that it customizes
treatment
to meet the needs of each individual person.
(j) Informed patient choices will help terminally ill patients and
their families
cope with one of life's most challenging situations.
SEC. 2. Part 1.8 (commencing with Section 442)
is added to
Division 1 of the Health and Safety Code, to read:
PART 1.8. End-Of-Life Care
442.
For the purposes of this part, the following definitions
shall apply:
(a) "Actively dying" means the phase of terminal illness when
death is imminent.
(b) "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.
(c) "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.
(d) "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,
and that
meets all of the criteria specified in subdivision (b) of Section
1746.
(e) "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 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 as described in subdivision
(b) of Section 1339.31.
In some cases, disease-targeted treatment may
be used in palliative care.
(f) "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.
442.5.
When a health care provider makes a diagnosis that a
patient has a terminal illness,
the health care provider shall, upon
the patient's request,
provide the patient with comprehensive
information and counseling
regarding legal end-of-life care options
pursuant to this section.
When a terminally ill patient is in a
health facility, as defined in Section 1250,
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.
(a) If the patient indicates a desire to receive the information
and counseling,
the comprehensive information shall include, but not
be limited to, the following:
(1) Hospice care at home or in a health care setting.
(2) A prognosis with and without the continuation of
disease-targeted treatment.
(3) The patient's right to refusal of or withdrawal from
life-sustaining treatment.
(4) The patient's right to continue to pursue disease-targeted
treatment,
with or without concurrent palliative care.
(5) 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.
(6) The patient's right to give individual health care instruction
pursuant to Section 4670 of the Probate Code,
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.
(b) The information described in subdivision (a) may, but is not
required to be, in writing.
Health care providers may utilize
information from
organizations specializing in end-of-life care that
provide information
on factsheets and Internet Web sites
to convey
the information described in subdivision (a).
(c) 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.
Information and counseling as described
in subdivision (a)
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.
(d) 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 shall be referred to the appropriate entity for
that information.
442.7.
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 shall do both of the following:
(a) Refer or transfer a patient to another health care provider
that shall provide the requested information.
(b) Provide the patient with information on procedures to transfer
to another health care provider that shall provide the requested
information.
CRITIQUE OF THE
CALIFORNIA RIGHT TO KNOW
END-OF-LIFE OPTIONS LAW
by
James Leonard Park
The following comments on the California law are
offered
in case other states decide to follow the example of California.
This law passed easily in California,
with the official support of the California Medical Association.
But other states might decide to enact more comprehensive laws.
ONLY A FEW END-OF-LIFE OPTIONS ARE MENTIONED IN THE LAW
When it was originally proposed,
this law contained a more complete list of end-of-life options.
But opponents of the right-to-die criticized it as a 'euthanasia' bill,
so the more controversial life-ending choices were dropped.
Only four specific options made it into the law:
"the availability of
hospice care,
the efficacy and potential side effects of continued
disease-targeted treatment,
and withholding or withdrawal of
life-sustaining treatments."
Another part of the law discusses pain-control.
The law does explicitly say that the options that
can be discussed
are not limited to the four
named:
(1) Hospice care is the least controversial.
And the early parts of this law say so much about hospice care
that the casual reader might believe that this is a law promoting
hospice care.
And there is no denying that better use of hospice services
will improve the quality of terminal care for any dying patient.
(2) The doctor is encouraged to discuss the pros and cons
of continuing attempts to
treat the disease.
This is already a part of any medical care.
It is called "informed consent".
Any doctor who does not discuss medical treatments
with the patient and/or the proxies
is already guilty of malpractice.
Every treatment has both positive and negative effects.
Both pros and cons must be discussed with every patient
for every proposed medical treatment.
(3) The doctor is encouraged to discuss and possibly provide pain-control:
"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."
What doctors would consult this text in California
law
to receive this encouragement?
(4) The "withholding or withdrawal of life-sustaining treatments"
is the only possibly-new option contained in this law.
Not all patients know that they have a right
to avoid or discontinue life-supports.
Because life-supports have become so routine in modern medical care,
most patients assume these to be standard medical treatments,
which no one would consider omitting or discontinuing.
But here the doctor is given explicit permission
to discuss the possibility of turning off the machines.
Life-support systems are not legally required.
And 'pulling the plug' is a legal option at the end of life.
Other legal options that could have been mentioned
include:
(5) increasing
pain-medication with the knowledge
that the pain-killers themselves
will probably shorten the process of dying.
(6) Terminal sedation.
This is a step beyond merely increasing the drugs
intended to control pain and suffering.
Terminal sedation means giving enough drugs
to keep the patient continuously
unconscious until death.
Modern medical practice recognizes this option.
And it could be included in any law concerning end-of-life options.
(7) Terminal dehydration.
It is also a legal option to withhold food and water,
with the knowledge that the patient will die sooner as a result.
When terminal sedation is chosen,
all food and water is usually also withheld,
since these add nothing to the quality of the patient's life
and they only delay the moment of death.
In defense of this California law, it should be
noted that
"artificial
nutrition and hydration"
is included in definition f as a form of life-support.
"Artificial
nutrition and hydration" means food and water provided by tubes.
All such mechanical forms of life-support can be omitted or ended.
But the option of terminal
dehydration would include
taking in food and water by any and all means,
including normal eating and drinking.
It is in fact a legal option for the patient and/or the proxies
to decide to give up all
forms of taking in food and water.
As said at the beginning of this section
about how few end-of-life options are mentioned,
these additional end-of-life options are implicit in this California
law,
but they appear nowhere in the text.
More courageous and honest end-of-life laws
will mention all legal
options.
If
we are
creating 'right-to-know' laws,
why leave out some of the
information we have a right to know?
Where state law also permits life-ending chemicals
(as is now the case in Oregon and Washington states),
this option will also be added to this list of four.
Here is a further explanation of the four legal
options:
"Four Legal Ways to Choose a Voluntary Death or a Merciful Death":
http://www.tc.umn.edu/~parkx032/CY-L-END.html
OTHER LIMITATIONS
The patient must be declared
to be "terminal" or "imminently dying".
The law requires the patient to be declared terminal
before any of its provisions come into effect.
Only a small percentage of people who actually died
were ever officially declared to be in a terminal condition.
Any other laws modeled after this one
should seek to avoid this requirement of terminal illness.
All patients will eventually die.
Therefore it is relevant for everyone
to know their options at the end
of life.
The patient must request
information about end-of-life options.
The doctor who is caring for a patient near the end
of life
has no affirmative obligation to disclose any of the legal options.
Only if requested by the
patient does any obligation come into force.
And even then, if the doctor does not want to comply,
he or she can transfer the patient to another doctor,
who is willing and able to explain
the end-of-life options open to the patient.
(How often will that happen?)
The end-of-life options mentioned in this law
are so well-known and so
innocuous
that almost no doctor will be reluctant to discuss them.
This law has no teeth:
There are no consequences
for doctors who do not provide needed
information.
Since 2008, how often has this law been applied?
I suspect that this law has been universally ignored
now that it is printed in the law-books of California.
Lawmakers probably should not attempt to control
what happens between patient and doctor.
Has any doctor in California even been criticized
for not providing end-of-life information?
And if so, did anything happen as a result of this criticism?
A BETTER LAW MIGHT BE CRAFTED
TO PROTECT THE RIGHTS OF DOCTORS
This law
supposedly requires doctors to tell their patients a few things.
Doctors rightly resist any
attempts to legislate medical practice.
When sitting down with patients
and/or their proxies,
doctors should not have to consult
the California law
to know what to say
or seek the advice of
lawyers to see if they have complied.
This law has no
teeth.
No sanctions or penalties are named
for doctors who refuse to follow
the advice contained in this law.
Supporters have said that their
might receive sanction
from their professional
organizations for unprofessional conduct.
But why would anyone waste time
having any such hearing?
Doctors are needed at the bedside,
not in the hearing room.
I predict that no actions will
ever be taken to enforce this law.
Anyone
who might complain
that
they were not given options
for terminal care
already knows what these options
are.
And if the survivors learn they had other options after their loved one
has died,
will they really go to the trouble of making a civil or criminal
complaint?
It would have
been much better (in my non-professional opinion)
to create a law that made as explicit
as possible
just what options doctors have at the end of life.
Such laws would be written in deep
consultation with physicians.
Physicians sometimes need
protection from patients and/or families
who believe the doctors did
something wrong in their terminal care.
A better law
might be called "End-of-Life Options".
It would put into legal language
the choices already being used in
the modern practice of terminal care.
This law would spell out in as
much detail as requested by doctors
just what it means for them to
recommend
any of the following end-of-life
options:
(1) increasing pain-medication.
(2) terminal sedation.
(3) disconnecting life-supports.
(4) giving up food and water.
When these
practices are explicitly embodied in state law,
then physicians practicing in that
state
would not have to worry about any
civil or criminal complaints
from patients and/or their families
that they did in fact recommend
any of these legal end-of-life options.
Physicians
would be protected against malpractice suits
because the state law explicitly
permits these actions.
Physicians
would be protected against any criminal prosecutions
because state law says that these
options are all legal.
Some
less-developed nations still have controversies
concerning these practices.
And there have been court cases
trying to decide just what is permitted at the end of
life
and what is not permitted.
Putting explicit permission into
the written laws
would eliminate any and all such
confusions
in the public mind and in the
justice systems.
End-of-life
options laws will be easier to pass
in the most advanced parts of the
world
because modern medicine already
follows these practices.
But the greatest benefits might be
appreciated
in less-advanced parts of the
world,
where medical care is less-well
defined.
For example, terminal dehydration
will be controversial in some countries.
And, perhaps
most powerfully,
doctors
will enthusiastically support any laws
that make their end-of-life
options explicit.
Sometimes doctors worry that they
might be stretching the law.
But when the law says that they
can (for example)
disconnect life-supports under
certain safeguards,
then they can proceed without
consulting any legal experts.
law posted here
November 16, 2008; critique added 11-22-2008; revised 5-12-2010;
8-6-2011