AB1592

(Aroner): This bill would enact the Death with Dignity Act, which would authorize an adult who meets certain qualifications, and who has been determined by his or her attending physician to be suffering from a terminal disease, as defined, to make a request for medication for the purpose of ending his or her life in a humane and dignified manner. The bill would establish procedures for making these requests. Status: in Assembly Inactive file on request of author.

Position: Oppose. Letter of opposition sent.

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Following is the Resolution adopted as CDR policy on physician-assisted suicide.

Resolution Adopted by Californians for Disability Rights on Physician
Assisted Suicide
May, 1997

Whereas the Californians for Disability Rights (CDR), strongly supports a
person's right to self determination;and

Whereas CDR also recognizes the current lack of effective, available,
health care, long term care, and other support services for persons with
disabilities; and

Whereas prevailing attitudes about disability, although somewhat improved,
still question the quality of life of persons with disabilities, especially
for those of us with severe disabilities; and

Whereas we affirm and agree with the needs recognized by Last Acts Inc. to
improve the currently inadequate knowledge of and support in the health
care system for terminally ill persons and their families for hospice care,
effective pain management, and the right to refuse medical treatment and
still receive palliative care;

Now therefore be it resolved that the CDR State Council, on behalf of the
members of CDR, supports improvements in the areas above as a primary focus
and opposes physician assisted suicide.

CDR has taken a position in opposition to AB1592, Aroner, regarding
physician-assisted suicide in line with a previously adopted stand.
Here is the letter of explanation sent to Assembly Member Aroner.
 

April 19, 1999

The Honorable Assembly Member Dion Aroner
State Capitol
Sacramento, CA 95814

Dear Assembly Member Aroner:

Californians for Disability Rights (CDR) is one of the largest and oldest
grassroots organizations of persons with disabilities in California.  We
appreciate the fact that you carried AB 2702 for us last year and that you
have supported the disability community on many important issues over the
years, both before and since your election to serve in the Legislature.
Thus, we regret to say that we must respectfully advise you that CDR, along
with other disability-rights advocates, has come to the conclusion that we
must oppose Assembly Bill 1592.

We fully understand that many people fear the prospect of suffering with a
painful terminal illness, especially since the medical profession often
pressures people to undergo treatment that is itself painful or
debilitating. We also acknowledge that informed choice is an important
principle that should govern the delivery of medical care.  However, we
believe that there are other ways that these issues can be addressed and
that assisted suicide is a dangerous practice that could all to easily be
abused. AB 1592 does include some measures aimed at preventing hasty or
uninformed decisions, but we do not believe they go nearly far enough.

This is a complex issue.  CDR has been studying the topic for several
years.  We previously expressed our position on physician assisted suicide
in the form of a Resolution which is attached.  Our State Council at its
Saturday April 17, 1999 meeting reaffirmed the concepts in the Resolution
along with voting to oppose AB 1592.

Because of our great respect for you and our knowledge of your long
standing support of disability issues, we would like the opportunity to
meet with you to discuss this issue and other alternatives to address some
of the issues surrounding it.  However, as AB 1592 will be heard in the
Assembly Judiciary Committee tomorrow, we felt compelled to put our
concerns in writing.  Accordingly, this letter provides a brief summary of
our general objections to the concept of assisted suicide and our specific
concerns about AB 1592.

The disability community has at least two serious objections to the basic
concept of assisted suicide.  These are:

1. Historical Experience:

The Holocaust Museum in Washington, D.C., has documented that in Nazi
Germany the T-4 euthanasia program was developed, tested, and utilized on
persons with disabilities.  In an effort to create the "perfect race,"
several hundred thousand persons with disabilities were taken to centers
where they were euthanized without regard to their will or desire.  These
techniques were later utilized in the gas chambers.  More recently, in
Holland where physician assisted suicide is legal, a 1990 government study
reported that 5,941 persons were given lethal injections without their
consent.  Of these, 1,474 were fully competent according to their
physicians.  Such persons were euthanized due to reasons such as " low
quality of life, no prospect of improvement, and the family couldn't take
it anymore."  Finally, data reported from Oregon by the New England Journal
of Medicine, where the law more closely resembles AB 1592, reflects that
one person requested medication to end their life due to intractable pain.
The other 15 known suicides were for the following reasons: 12 for "loss of
autonomy," 10 for the 'inability to participate in activities", and 8 cited
loss of control of bodily functions.   The reasons for the end of life in
Holland and for all but one person in Oregon are disability issues that we
have been dealing with for decades.

2.  Attitudes Toward Disability

Concerns in this area relate to the pervasive and deeply embedded
stereotypes that exist in our society about disability and their impact on
persons with illnesses or disabilities, their families and friends, and the
medical profession.  There is still widespread general belief that life
with a severe disability or chronic or terminal illness is an intolerable
burden which cannot be sustained by the individual and which places great
hardship on family and friends.  Because we have all been socialized with
this perspective, to one degree or another, it is often the first initial
thought pattern after diagnosis of a disability or even a terminal illness.
 As Christopher Reeves makes clear in his book, Still Me, the reaction of
his wife to his injury made the difference in his willingness to choose to
live.  We are concerned that the self interest and even the lack of
sensitivity that may be natural to family members and friends may encourage
people to choose to end their lives to reduce the burden on others.  In
addition, the stories told by countless persons with disabilities about the
medical profession's lack of disability sensitivity make it clear that
medical professionals, too, carry stereotypes and misconceptions about life
with a disability or serious illness.

We would also like to address several specific concerns related to AB 1592.

1. Defining Terminal Illness:

AB 1592 provides that a person can only get assistance to end their life if
they are terminally ill.  The bill defines that term to mean that, in the
opinion of a physician, death is certain to occur within six months.
However, the bill is not clear about how to apply this definition,
particularly with respect to those with chronic or progressive medical
conditions.  Dr. Kevorkian started by assisting persons with reported
terminal illnesses to die.  He then progressed to assist in the deaths of
numerous persons with a variety of medical conditions and disabilities,
many of whom were not imminently at risk of death.  We believe AB 1592
could be construed to permit such abuses. For example, if someone has a
progressive disability, and especially if they have lived beyond the "life
expectancy" for their condition would they be defined as having a terminal
illness?

A related concern involves the situation of a person with a chronic or
progressive disability who may incur a sudden illness such as pneumonia.
Is there the possibility that such a person may receive a diagnosis by a
physician who does not specialize in working with persons with
disabilities, which is then confirmed by another physician, of being
"terminally ill"? If the person experiences an extended illness and
recovery period often accompanied by undiagnosed reactive depression, it is
possible that the time limits for the offering of the medication to end
life could be reached.

2.  Health Care and Services:

We believe assisted suicide must be considered in light of the availability
of quality health care and support services which are necessary in order to
continue to live with a terminal illness.  The degree of access to health
care, palliative care, home health care, and hospice care all influence a
person's desire to live.  Further, as health care costs increase, there may
be a tendency for health care providers to limit access to such services.
Even more dangerous is the possibility that information about options will
be slanted by a health care provider, consciously or not, to support the
option of ending one's life early rather than to have insurance or the
government pay for expensive and extended treatments.  In addition, such an
option can become an expedient solution to assist people to die rather than
to provide funding for increased palliative and hospice care as well as
increased home health care to allow people to live out their natural lives
in dignity and maximum comfort.

Further concerns arise regarding AB 1592 due to the health care system's
reliance on managed care models.  For example, under AB 1592, a physician
from the patient's managed care provider would be allowed to make the
terminal diagnosis and another physician, who would very likely be from the
same managed care system, could make the confirming diagnosis.  CDR sees
this as a conflict of interest in a system where a premium is placed on
cost containment.

In addition, the bill requires the patient to be informed of all "feasible"
treatment options including hospice care and palliative care. However,
there is no definition of how "feasibility" is to be defined.  If the
health care system finds certain options to be costly and therefore, not
feasible, do they not have to be offered to the patient?

3.  Counseling Services:

AB 1592 does not require counseling for all persons who request medication
to end their lives.  Instead, it requires physicians to offer counseling to
persons "who may be suffering from a psychiatric or psychological disorder,
or depression causing impaired judgement."  This provision of the bill
raises several serious concerns.  First, even in the cases described above,
counseling must be offered but it is not required.   Second, physicians
historically are not well trained to recognize such mental problems,
especially reactive depression.  Third, even when counseling is provided,
the bill specifies that it will be done by a psychologist or psychologist,
not by someone who is trained and specializes in death and dying or in
hospice care.  Fourth, the counseling may be provided by someone from the
same health care system as the person requesting to end their life even
when it is an HMO.  This again raises the issue of possible conflict of
interest.

Summary:

After a great deal of discussion CDR has concluded that there are too many
risks at stake for persons with disabilities to embrace assisted suicide.
We believe it is dangerous to assume that the history of forced euthanasia
might not be repeated, especially in a climate where hate crimes are not
unheard of, where medical costs are a growing concern, and where acceptance
of disability by general society is a goal we have yet to achieve.  We are
very interested in exploring options with you and others to increase access
to palliative and hospice care as well as to increase informed choice for
persons with terminal illnesses in refusing extensive medical treatment.
We believe there is significant progress which can and should be made in
these areas.  For these reasons, we feel compelled to oppose AB 1592, but
we would appreciate the opportunity to meet with you to further discuss
these matters.

Sincerely,
Susan Barnhill
President, Californians for Disability Rights