BILL ANALYSIS Ó
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|SENATE RULES COMMITTEE | SB 128|
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THIRD READING
Bill No: SB 128
Author: Wolk (D) and Monning (D), et al.
Amended: 6/1/15
Vote: 21
SENATE HEALTH COMMITTEE: 6-2, 3/25/15
AYES: Hernandez, Hall, Mitchell, Monning, Roth, Wolk
NOES: Nguyen, Nielsen
NO VOTE RECORDED: Pan
SENATE JUDICIARY COMMITTEE: 5-2, 4/7/15
AYES: Jackson, Hertzberg, Leno, Monning, Wieckowski
NOES: Vidak, Anderson
SENATE APPROPRIATIONS COMMITTEE: 5-2, 5/28/15
AYES: Lara, Beall, Hill, Leyva, Mendoza
NOES: Bates, Nielsen
SUBJECT: End of life
SOURCE: Author
DIGEST: This bill permits a qualified adult with capacity to
make medical decisions, who has been diagnosed with a terminal
disease to receive a prescription for an aid in dying drug if
certain conditions are met, such as two oral requests, a minimum
of 15 days apart and a signed written request witnessed by two
individuals is provided to his or her attending physician, the
attending physician refers the patient to an independent,
consulting physician to confirm diagnosis and capacity of the
patient to make medical decisions, and the attending physician
refers the patient for a mental health specialist assessment if
there are indications of a mental disorder. This bill protects
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a person from civil, criminal, administrative, employment, or
contractual liability, or professional disciplinary action, for
participating in good faith compliance with this bill. This
bill permits a person or entity that elects, for reasons of
conscience, morality, or ethics, not to engage in activities
authorized pursuant to this bill. This bill makes it a felony
to knowingly alter or forge a request for a drug to end an
individual's life without his or her authorization or concealing
or destroying a withdrawal or a rescission of a request for an
aid in dying drug if the act is done with the intent or effect
of causing the individual's death. This bill makes it a felony
to knowingly coerce or exert undue influence on an individual to
request an aid in dying drug for the purpose of ending his or
her life.
Senate Floor Amendments of 6/1/15 revise the definition of
"self-administer," and permit an interpreter to be present
during the private discussion when the attending physician
confirms that a qualified individual's request does not arise
from coercion or undue influence by another person. Require the
mental health specialist to examine the qualified individual and
his or her relevant medical records; determine that the
individual has mental capacity to make medication decisions, act
voluntarily and make informed decisions; determine that the
individual is not suffering from impaired judgment due to a
mental disorder; and fulfill the record document requirements.
Permit a person or entity that elects, for reasons of
conscience, morality, or ethics, not to engage in activities
authorized pursuant to this bill and states that a person is not
required to take any action in support of an individual's
decision under this bill. Protect a health care provider from
civil, criminal, administrative, disciplinary, employment,
credentialing, professional discipline, contractual liability or
medical staff action, sanction, or penalty or other liability
for refusing to participate in activities authorized under the
End of Life Option Act, including but not limited to, refusing
to inform a patient regarding his or her rights under the End of
Life Option Act, and not referring an individual to a physician
who participates in activities authorized under the End of Life
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Option Act.
ANALYSIS:
Existing law:
1) Establishes requirements on a health care provider when a
provider makes a diagnosis that a patient has a terminal
illness, including that the patient has a right to
comprehensive information and counseling regarding legal end
of life options.
2) Provides that a person who has the capacity to give informed
consent to a proposed medical treatment also has the capacity
to refuse consent to that treatment.
3) Makes it a felony to deliberately aid, or advise, or
encourage another to commit suicide.
This bill:
1) Permits a qualified individual with capacity to make medical
decisions, as defined, who is an adult with a terminal
disease diagnosis to make a request to receive a prescription
for an aid in dying drug if all of the following conditions
are satisfied:
a) The attending physician has diagnosed the individual
with a terminal disease;
b) The individual has voluntarily expressed the wish to
receive a prescription for an aid in dying drug;
c) The individual is a resident of California and is able
to establish residency, as specified; and
d) The individual documents his or her request for an aid
in dying drug, as specified.
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2) Prohibits a request for an aid in dying drug made on behalf
of a patient through a power of attorney, an advance health
care directive, or a conservator.
3) Requires a qualified individual wishing to receive a
prescription for an aid in dying drug to submit two oral
requests, a minimum of 15 days apart, and a witnessed written
request, as specified, to his or her attending physician.
4) Requires at least two adult witnesses who attest that to the
best of their knowledge and belief the individual has
capacity to make medical decisions, is acting voluntarily,
and is not being coerced to sign the request.
5) Permits an individual to rescind his or her request at any
time without regard to the individual's mental state.
6) Requires the attending physician to:
a) Make a determination that the requesting adult has
capacity to make medical decisions, has a terminal disease
diagnosis, has voluntarily made the request, and has the
physical and mental ability to self-administer the aid in
dying drug.
b) Confirm that the individual is making an informed
decision and inform the individual of feasible
alternatives or additional treatment options including,
but not limited to, comfort care, hospice care, palliative
care, and pain control.
c) Refer the individual to a consulting physician,
(defined as a physician who is independent from the
attending physician and qualified by specialty or
experience to make a professional diagnosis and prognosis
regarding the individual's disease), for medical
confirmation of the diagnosis, prognosis, and for a
determination that the individual has capacity to make
medical decisions and has complied with this bill.
d) Refer the individual for a mental health specialist
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assessment if there are indications of a mental disorder.
e) Confirm that the individual's request does not arise
from coercion or undue influence by another person by
having the discussion outside the presence of any other
persons.
f) Fulfill the record documentation required by this
bill, as specified.
g) Complete the End of Life Option Act Checklist and
include it in the individual's medical record.
7) Prohibits a request for a prescription for an aid in dying
drug to be made on behalf of the patient, and requires an
individual seeking to obtain a prescription for an aid in
dying drug to submit all three requests directly to the
attending physician and not through a designee.
8) Invalidates any provision in a contract, will or other
agreement executed on or after January 1, 2016, whether
written or oral, to the extent the provision would affect
whether a person may make, withdraw, or rescind a request for
an aid in dying drug.
9) Prohibits an insurance carrier from providing any
information in communications made to an individual about the
availability of an aid in dying drug absent a request.
Prohibits any communication from including both the denial of
treatment and information as to the availability of aid in
dying drug coverage.
10)Requires participation in activities authorized pursuant to
this bill to be voluntary. Permits a person or entity that
elects, for reasons of conscience, morality, or ethics, not
to engage in activities authorized pursuant to this bill, and
provides that a person or entity is not required to take any
action in support of a patient's decision under this bill,
except as otherwise required by law.
11)Authorizes a health care provider to prohibit employees,
independent contractors, or other persons or entities, from
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participating in activities under this bill while on premises
owned or under the management or direct control of the health
care provider, as specified.
12)Makes it a felony to knowingly alter or forge a request for
medication to end an individual's life without his or her
authorization or concealing or destroying a withdrawal or
rescission of a request for an aid in dying drug if the act
is done with the intent or effect of causing the individual's
death.
13)Makes it a felony to knowingly coerce or exert undue
influence on an individual to request an aid in dying drug
for the purpose of ending his or her life or to destroy a
withdrawal or rescission of a request.
14)Provides that nothing in this bill may be construed to
authorize a physician or any other person to end an
individual's life by lethal injection, mercy killing, or
active euthanasia. Provides that actions taken in accordance
with this bill shall not, for any purpose, constitute
suicide, assisted suicide, homicide, or elder abuse under the
law.
15)Requires the State Public Health Officer (PHO) to annually
review a sample of medical records maintained as required
under this bill and adopt regulations establishing reporting
requirements for physicians and pharmacists to determine
utilization and compliance with this bill. Requires the PHO
to make available to health care providers the End of Life
Option Act Checklist by posting it on its Internet Web site.
Comments
Author's statement. According to the authors, "the End of Life
Option Act would give qualified, terminally ill patients in
California, who have been given a prognosis of less than six
months to live, the autonomy to exercise ultimate
decision-making authority in end of life decisions. By giving
these patients the legal right to ask for and receive a lethal
prescription from his/her physician, SB 128 would provide one
more option to the number of options one has when faced with the
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end of life. Furthermore, there are provisions to safeguard
patients and to allow voluntary participation by physicians,
pharmacists and healthcare facilities. This medical practice is
already recognized in five other states. Terminally ill
Californians should not have to leave the state in order to have
a peaceful death. In the end, how each of us spends the end of
our lives is a deeply personal decision. That decision should
remain with the individual, as a matter of personal freedom and
liberty, without criminalizing those who help to honor our
wishes and ease our suffering."
Other states. Montana, Oregon, Vermont, and Washington
currently allow a person to request medication to end one's
life. In January 2014, New Mexico's authorization was
determined in Morris v. New Mexico, however the New Mexico
Attorney General has appealed the district court's ruling.
According to the Albuquerque Journal News, a decision is not
expected for several months.
Other countries. Belgium, the Netherlands, Luxembourg,
Switzerland and, beginning in 2016 Canada, allow physician aid
in dying. The Netherlands and Belgium also allow euthanasia
(medication administered by a physician). Belgium extended its
law in 2014 to include children of any age living with terminal
illness. In the Netherlands, the law is not available to
children under 12 years old and for teenagers, the law requires
parental consent.
Oregon data. According to the Oregon Public Health Division
2013 report, from 1998 to 2013, 1,173 were prescribed aid with
dying medication and 752 deaths occurred as a result of
ingesting prescribed medications. 90% of those who ingested the
medication were enrolled in hospice. 63% had private insurance,
35% had Medicare, Medicaid or other governmental insurance, and
less than 2% were uninsured (35 individuals had unknown status).
Almost 80% of those who ingested the medication had malignant
neoplasms, 7% had Amyotrophic lateral sclerosis, 5% had chronic
lower respiratory disease, 2% had heart disease, 1% had HIV/AIDS
and 6% had other illnesses. 6% of those who ingested the
medication were referred for psychiatric evaluation. 94%
informed their family of their decision. 95% died at home, 4%
died in long-term care, and .1% died in the hospital. 91% of
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those who ingested the medication were concerned about loss of
autonomy, 89% were concerned about being less able to engage in
activities that make life enjoyable, 81% were concerned about
loss of dignity, 50% were concerned about losing bodily
function, 40% were concerned about being a burden on family,
friends or caregivers, 23% were concerned about inadequate pain
control, and 3% were concerned about financial implications of
treatment. There were 22 complications of regurgitation
reported and six individuals regained consciousness after
ingesting the medications. A range of between 15 and 1,009 days
elapsed from the first request for medication and death.
Brittany Maynard. Brittany Maynard was a California native with
a terminal brain cancer diagnosis who moved to Oregon to access
its death with dignity law. Brittany Maynard died in Oregon
after taking aid in dying drugs on November 1, 2014. In the
final weeks of her life, Ms. Maynard partnered with Compassion
and Choices to launch a campaign to make aid in dying an open
and accessible medical practice in California and throughout the
country. After moving to Oregon with her family, establishing
the residency requirements, and finding new physicians, Ms.
Maynard obtained aid in dying drugs.
U.S. end of life care. A 2014 publication of the Institute of
Medicine (IOM), called Dying in America: Improving quality and
Honoring individual preferences near the end of life, identified
persistent major gaps in care near the end of life that require
urgent attention. Understanding and perceptions of death and
dying vary considerably across the population and are influenced
by culture, socioeconomic status, and education, as well as by
misinformation and fear. Engaging people in defining their own
values, goals, and preferences concerning care at the end of
life and ensuring that their care team understands their wishes
has proven remarkably elusive and challenging. While the
clinical fields of hospice and palliative care have become more
established, the number of specialists in these fields is too
small, and too few clinicians in primary and specialty fields
that entail caring for individuals with advanced serious
illnesses are proficient in basic palliative care. Often,
clinicians are reluctant to have honest and direct conversations
with patients and families about end of life issues. Patients
and families face additional difficulties presented by the
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health care system itself, which does not provide adequate
financial or organizational support for the kinds of health care
and social services that might truly make a difference to them.
The IOM committee believes a patient-centered, family-oriented
approach to care near the end of life should be a high national
priority and that compassionate, affordable, and effective care
for these patients is an achievable goal.
Evidence of problems. An article published in the Michigan Law
Review in June of 2008, referenced by opponents of this bill,
examines the Oregon Death with Dignity Act, drawing from case
studies and information provided by doctors, families and other
care givers. The article concludes that seemingly reasonable
safeguards for the care and protection of terminally ill
patients written into the Oregon law are being circumvented.
The article indicates that the Oregon Public Health Division
does not collect the information it would need to effectively
monitor the law. The article draws on six cases (four with
independent information from more than one source, and one with
information provided by an opponent of aid in dying and another
with information provided by a proponent). Another document
provided by the Disability Rights Education and Defense Fund
describes a situation where a patient's caretaker was prosecuted
by federal investigators for real estate fraud and mistreatment
of the patient after his death by physician aid in dying. This
document also describes a situation where a family member helped
a patient take the medication rather than through
self-administration.
FISCAL EFFECT: Appropriation: No Fiscal
Com.:YesLocal: Yes
According to the Senate Appropriations Committee:
1)One-time costs of $265,000 over two years for the development
of regulations by the Department of Public Health (DPH)
(General Fund).
2)One-time costs of $90,000 and ongoing costs of $10,000 per
year for DPH to develop and operate a secure computer system
for tracking patients who have received an aid-in-dying
prescription (General Fund).
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3)Ongoing costs of $235,000 per year for DPH staff to collect
data, follow up on prescriptions with prescribing physicians,
and prepare the required annual report (General Fund).
4)Ongoing costs of $275,000 per year for DPH staff to review a
sample of the medical records of participating patients, to
ensure compliance with the requirements of this bill (General
Fund).
5)One-time costs of $600,000 over two year for the Department of
Managed Health Care (DMHC) to develop policies, adopt
regulations, and respond to public record requests (Managed
Care Fund). This bill does not mandate coverage for
aid-in-dying medication by health plans. However, because
current law mandates coverage for pain management drugs, DMHC
expects to develop regulations to clarify the responsibilities
of health plans in this area.
6)Minor costs to the Medical Board: The Medical Board would not
need to amend or adopt any regulations. The Medical Board
estimates that any additional enforcement actions due to this
bill would result in minor costs.
7)Minor costs to the Board of Pharmacy: The Board of Pharmacy
would not need to amend or adopt any regulations. The Board of
Pharmacy estimates that any additional enforcement actions due
to this bill would result in minor costs.
8)Minor potential reduction in statewide health care spending
(various funds). (See Senate Appropriations Committee analysis
for further discussion).
SUPPORT: (Verified5/28/15)
Insurance Commissioner Dave Jones
State Controller Betty Yee
AIDS Healthcare Foundation
AIDS Project Los Angeles
Alameda County Board of Supervisors
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American Civil Liberties Union of California
American Federation of State, County and Municipal Employees,
AFL-CIO
American Medical Student Association
American Medical Women's Association
American Nurses Association, California
Bloom in the Desert Ministries United Church of Christ
Brownie Mary Democratic Club
California Church IMPACT
California Primary Care Association
California Psychological Association
California Senior Legislature
Camarillo Health Care District
Cardinal Point at Mariner Square Residents' Association
Cathedral City
Cities of Los Angeles, San Jose, Santa Barbara, and West
Hollywood
Civil Rights for Seniors
Coastside Democrats
Compassion & Choices
Conference of California Bar Associations
Congress of California Seniors
County of Santa Cruz Board of Supervisors
Death with Dignity National Center
Democratic Party of Orange County
Democratic Party of Santa Barbara County
Democratic Women of Monterey County
Democratic Women of Santa Barbara County
Democrats of Napa Valley Club
Desert AIDS Project
Desert Stonewall Democrats
Equality California
Ethical Culture Society of Silicon Valley
Full Circle Living and Dying Collective
GLMA: Health Professionals Advancing LGBT Equality
Gray Panthers of Long Beach
Hemlock Society of San Diego
Honorable Dianne Feinstein, United States Senator
I Care for Your Loved One Compassionate Senior Services
Kings County Democratic Central Committee
Laguna Woods Democratic Club
Libertarian Party of Orange County
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Lompoc Valley Democratic Club
Los Angeles LGBT Center
Mar Vista Community Council
Morongo Basin Democratic Club
Napa County Democratic Central Committee
National Association of Social Workers - California Chapter
National Center for Lesbian Rights
National Council of Jewish Women
Older Women's League-San Francisco
Planned Parenthood
Progressive Democrats of America California
Protrero Hill Democratic Club
San Francisco AIDS Foundation
San Francisco for Democracy
San Mateo County Democracy for America
San Mateo County Democratic Central Committee
San Mateo County Medical Association
Santa Barbara County
Santa Cruz City Council
Secular Coalition for California
Shared Crossing Project
Sierra County Democratic Party
Sonoma County Democratic Party
South Orange County Democratic Club
Sun City Democrats
Tam Nguyen, Councilmember, City of San Jose
Trinity County Democratic Central Committee
Trinity County Progressives
Trinity United Methodist Church
OPPOSITION: (Verified5/28/15)
Access to Independence
Agudath Israel of California
Alliance of Catholic Health Care
Arc, California
Arroyo Grande Community Hospital, Dignity Health Affiliate
Association of Northern California Oncologists
Autistic Self Advocacy Network
California Catholic Conference
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California Disability Alliance
California Family Alliance
California Foundation for Independent Living Centers
California Nurses for Ethical Standards
California Prolife Council
California Right to Life Committee, Inc.
Calvary Chapel Golden Springs
Capitol Resource Institute
Coalition of Concerned Medical Professionals
Communities Actively Living Independent and Free
Communities United In Defense of Olmstead
Concerned Women for America
Dignity Health
Disability Action Center
Disability Rights Education & Defense Fund
Faith and Public Policy, Calvary Chapel Chino Hills Ministry
FREED Center for Independent Living
French Hospital Medical Center, Dignity Health Affiliate
Independent Living Resource Center of San Francisco
Independent Living Center of Southern California
International Life Services
Knights of Columbus Council 1920, Glendale, California
Life Legal Defense Foundation
Life Priority Network
Medical Oncology Association of Southern California
Mission Hospital
Mission Hospital Laguna Beach
National Right to Life Committee
North Orange County ProLife Chapter
Pajaro Valley Senior Coalition
Patients Right Action Fund
Petaluma Valley Hospital
Placer Independent Resource Services
Providence Health & Services, Southern California
Queen of the Valley Medical Center
Redwood Memorial Hospital, Fortuna
San Joaquin ProLife Council
Santa Rosa Memorial Hospital
Scholl Institute of Bioethics
Silicon Valley Independent Living Center
Sisters of Social Service of Los Angeles
St. Joseph Hospital, Eureka
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St. Joseph Hospital, Orange
St. Jude Medical Center
St. Mary Medical Center
ARGUMENTS IN SUPPORT: Compassion and Choices writes that too
many suffer needlessly at the end of life, too many endure
unrelenting pain and other symptoms, and too many turn to
violent means at the end of life when medical aid could help
them die peacefully. This bill is modeled after legislation in
Oregon and other states where aid in dying has been proven to be
good policy and safe medical practice. California voters
support the medical option of aid in dying by more than two to
one margin (64% support compared to 24% oppose). Studies show
patients who receive counseling about end of life choices score
higher on quality of life and mood measures than patients who do
not. Courts have upheld this right. In 1997, the United States
Court of Appeals for the Ninth Circuit upheld Oregon's
first-in-the-nation Death With Dignity Act (passed by ballot in
1994). On December 31, 2009, Montana Supreme Court ruled in a
5-2 vote that terminally ill Montanans have the right to choose
aid in dying under state law. In January 2014, New Mexico
Second Judicial District Judge Nan Nash issued a landmark
decision that terminally ill, mentally competent adults have a
fundamental right to aid in dying under the substantive due
process clause of the New Mexico State Constitution. On
February 6, 2014, the Canada Supreme Court ruled that
prohibition of assisted dying violates the right to life,
liberty and security of the person and is not in accordance with
principles of fundamental justice.
The AIDS Healthcare Foundation writes, "When a person with HIV
reaches the end of life with treatment options no longer
available, it is inhumane that we fail to provide them with the
choice that would bring them peace." The Secular Coalition for
California supports the development of new public policy based
on science and reason and indicates that the benefits of this
bill are supported by extensive scientific study and data. They
strongly encourage policymakers to base their decisions
regarding this bill on sound, tested evidence, not superstition
and unsubstantiated fear-mongering. Equality California
indicates that this issue is particularly important to them
because of its impact on the lesbian, gay, bisexual, and
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transgender community. The roots of the "death with dignity"
movement owe much to mothers of men dying painfully during the
early days of the AIDS epidemic.
Almost one hundred physicians have registered their support for
this bill. Many write about witnessing patients suffer
horrifically painful deaths because the standard of care
medication management and surgery is not effective at
controlling terminal pain. Pain medication can cause disabling
side effects. One physician writes, "Providing terminally ill
patients with this humane option is preferable to the desperate
and covert self-help practices some patients are currently
forced to employ. Providing this autonomy and choice to the
vulnerable and dying is one of the last comforting things we can
do for our fellow humans." Another physician writes that
patients and families have asked for relief from suffering but
he has been unable to provide this which he believes is his role
as their physician. A physician and cancer patient indicates he
has urged the California Medical Association (of which he is a
member) to take a neutral position on this bill. He asserts
that palliative sedation is a poor substitute to offer as an
alternative, and he would not want to rely on a doctor sedating
him into unconsciousness in preference to having the key to exit
in his own possession.
ARGUMENTS IN OPPOSITION: The California Disability Alliance
indicates it has a broad agenda for promoting health,
independence and full community inclusion of persons with
disabilities but is convinced that legalizing physician assisted
suicide or euthanasia in the present environment of increasingly
cost-driven health care budgeting decisions will adversely
affect their efforts to achieve these goals and will result in
unnecessary deaths among people in poverty, people with
disabilities, and elderly people. California Family Alliance
states there is no true way to protect against undue influence
for those who seek to profit from a patient's early death.
California Family Alliance writes the true compassionate
approach is to provide terminal patients with a variety of
viable life-affirming options, including physical, mental and
emotional support. The California Foundation for Independent
Living Centers believes that people with disabilities and their
families will still face more subtle, behind-the-scenes forms of
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persuasion and coercion. The disability community is convinced
that the perception that death is preferable to living with a
disability is still pervasive.
The Association of Northern California Oncologists opposes this
bill because it is contrary to a physician's oath and primary
responsibility to do no harm, legalizing physician-assisted
suicide undermines the valuable and overwhelmingly successful
work of hospice and pain and palliative care colleagues, and
this bill is based on a common misunderstanding that it is easy
to determine when a patient is terminal.
Hematologists/oncologists are the first to recognize that it is
notoriously difficult for physicians to know when their patients
are terminal. Data from Oregon finds that many patients have
been prescribed life-ending medications and have lived more than
a year after the prescription has been filled. The Agudath
Israel of California, a Jewish advocacy group, is concerned
because of California's diversity and more advanced medical
system with many more large and advanced medical centers that
they are not sure the same results would be seen here as in
Oregon. The Alliance of Catholic Health Care (Alliance)
indicates that California law already gives every patient the
right to refuse extraordinary end of life treatment. The
Alliance also fears that if aid in dying becomes a legal right
or "settled law," it will be extremely difficult to limit it to
a small group of terminal patients. Additionally, the Alliance
is concerned that once a patient obtains a lethal dose of drugs
there is no transparency and cites a quote associated with the
Oregon Department of Human Services "?the reporting requirements
can only ensure that the process for obtaining lethal
medications complies with the law." The Alliance states, "We
cannot determine whether physician-assisted suicide is being
practiced outside the framework of the Death with Dignity Act."
The Alliance also refers to a Yale study of the Netherlands that
indicated in 18% of the cases there were complications and the
physician intervened and ended the life of the patient. The
Alliance also raises concerns that there is no definition of
active euthanasia. Several thousands of individuals registered
their opposition including some physicians. One physician
writes that the bill wrongly assumes all physicians are ideal
moral agents. Physicians are under increasing stress, workloads
and cost pressures. It takes no great skill and very little
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time to write a lethal prescription and it takes consummate
skill and lots of effort to provide good end of life care. A
coalition of opponents indicate that while protections for
health care providers have been increased through recent
amendments it is the patient who remains without adequate
protections.
Prepared by:Teri Boughton / HEALTH /
6/2/15 9:19:19
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