[Senate Hearing 109-1028]
[From the U.S. Government Publishing Office]
S. Hrg. 109-1028
THE CONSEQUENCES OF LEGALIZED ASSISTED SUICIDE AND EUTHANASIA
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HEARING
before the
SUBCOMMITTEE ON THE CONSTITUTION,
CIVIL RIGHTS AND PROPERTY RIGHTS
of the
COMMITTEE ON THE JUDICIARY
UNITED STATES SENATE
ONE HUNDRED NINTH CONGRESS
SECOND SESSION
__________
MAY 25, 2006
__________
Serial No. J-109-80
__________
Printed for the use of the Committee on the Judiciary
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45-836 PDF WASHINGTON : 2008
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COMMITTEE ON THE JUDICIARY
ARLEN SPECTER, Pennsylvania, Chairman
ORRIN G. HATCH, Utah PATRICK J. LEAHY, Vermont
CHARLES E. GRASSLEY, Iowa EDWARD M. KENNEDY, Massachusetts
JON KYL, Arizona JOSEPH R. BIDEN, Jr., Delaware
MIKE DeWINE, Ohio HERBERT KOHL, Wisconsin
JEFF SESSIONS, Alabama DIANNE FEINSTEIN, California
LINDSEY O. GRAHAM, South Carolina RUSSELL D. FEINGOLD, Wisconsin
JOHN CORNYN, Texas CHARLES E. SCHUMER, New York
SAM BROWNBACK, Kansas RICHARD J. DURBIN, Illinois
TOM COBURN, Oklahoma
Michael O'Neill, Chief Counsel and Staff Director
Bruce A. Cohen, Democratic Chief Counsel and Staff Director
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Subcommittee on the Constitution, Civil Rights and Property Rights
SAM BROWNBACK, Kansas, Chairman
ARLEN SPECTER, Pennsylvania RUSSELL D. FEINGOLD, Wisconsin
LINDSEY O. GRAHAM, South Carolina EDWARD M. KENNEDY, Massachusetts
JOHN CORNYN, Texas DIANNE FEINSTEIN, California
TOM COBURN, Oklahoma RICHARD J. DURBIN, Illinois
Ajit Pai, Majority Chief Counsel
Robert F. Schiff, Democratic Chief Counsel
C O N T E N T S
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STATEMENTS OF COMMITTEE MEMBERS
Page
Brownback, Hon. Sam, a U.S. Senator from the State of Kansas..... 1
Feingold, Hon. Russell D., a U.S. Senator from the State of
Wisconsin, prepared statement.................................. 57
WITNESSES
Coleman, Diane, President, Not Dead Yet, Forest Park, Illinois... 25
Imbody, Jonathan, Senior Policy Analyst, Christian Medical
Association, Ashburn, Virginia................................. 12
Jackson, Ann, Executive Director, and Chief Executive Officer,
Oregon Hospice Association, Portland, Oregon................... 23
Marker, Rita L., Executive Director, International Task Force on
Euthanasia and Assisted Suicide, Steubenville, Ohio............ 21
McMurchie, Julie S., Portland, Oregon............................ 8
Reitsema, Hendrik, Eck en Wiel, The Netherlands.................. 10
Smith, Wesley J., Senior Fellow, Discovery Institute, Castro
Valley, California............................................. 16
Tucker, Kathryn, Director of Legal Affairs, Compassion and
Choices, and Affiliate Professor of Law, University of
Washington School of Law, Seattle, Washington.................. 19
Wyden, Hon. Ron, a U.S. Senator from the State of Oregon......... 4
QUESTIONS AND ANSWERS
Responses of to Ann Jackson questions submitted by Senator
Feingold....................................................... 33
Responses of Julie McMurchie to questions submitted by Senator
Feingold....................................................... 36
Responses of Kathryn Tucker to questions submitted by Senator
Feingold....................................................... 38
SUBMISSIONS FOR THE RECORD
Coleman, Diane, President, Not Dead Yet, Forest Park, Illinois,
prepared statement............................................. 41
Imbody, Jonathan, Senior Policy Analyst, Christian Medical
Association, Ashburn, Virginia, prepared statement............. 59
Jackson, Ann, Executive Director, and Chief Executive Officer,
Oregon Hospice Association, Portland, Oregon, prepared
statement...................................................... 62
Marker, Rita L., Executive Director, International Task Force on
Euthanasia and Assisted Suicide, Steubenville, Ohio, prepared
statement...................................................... 66
McMurchie, Julie S., Portland, Oregon, prepared statement........ 77
Reitsema, Hendrik, Eck en Wiel, The Netherlands, prepared
statement...................................................... 80
Smith, Wesley J., Senior Fellow, Discovery Institute, Castro
Valley, California, prepared statement......................... 84
Tucker, Kathryn, Director of Legal Affairs, Compassion and
Choices, and Affiliate Professor of Law, University of
Washington School of Law, Seattle, Washington, prepared
statement...................................................... 105
Wyden, Hon. Ron, a U.S. Senator from the State of Oregon,
prepared statement............................................. 122
THE CONSEQUENCES OF LEGALIZED ASSISTED SUICIDE AND EUTHANASIA
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THURSDAY, MAY 25, 2006
United States Senate,
Subcommittee on the Constitution, Civil Rights and
Property Rights of the Committee on the Judiciary,
Washington, DC.
The Subcommittee met, pursuant to notice, at 1:02 p.m., in
room SD-226, Dirksen Senate Office Building, Hon. Sam
Brownback, Chairman of the Subcommittee, presiding.
Present: Senator Brownback.
OPENING STATEMENT OF HON. SAM BROWNBACK, A U.S. SENATOR FROM
THE STATE OF KANSAS
Chairman Brownback. The hearing will come to order. Thank
you all for joining us today. My colleague, and the ranking
member, Senator Feingold, I believe will be here shortly. He is
carrying an amendment on the floor, and when he comes at the
proper time we will have him do an opening statement. But I do
want to get this moving forward because we will have votes
coming up shortly on the floor and I would like to get as much
of the testimony as we can.
The fundamental duty of American Government, and indeed of
any government, is to protect and defend the lives of their
citizens, the sanctity of the lives of their citizens. It thus
becomes the duty of every lawmaker to examine closely any
policy that undermines either directly or indirectly the
importance and value of each individual's life.
As Chairman of this Subcommittee, I have held hearings
examining important issues such as abortion and the death
penalty, both of which are legal in the United States, to
examine whether they promote or inhibit the culture of life.
Today, we will take the next step in this inquiry and focus on
assisted suicide and euthanasia, and its effects on society and
how we view our fellow human beings.
To be sure, the constitutional question has long been
resolved. In a 1997 case called Washington v. Glucksberg, the
U.S. Supreme Court ruled that the 14th Amendment to the
Constitution does not protect a fundamental right to assisted
suicide. Recognizing that the state has an interest in
protecting human life, the Glucksberg court upheld Washington
State's ban on assisted suicide. ``To hold otherwise,'' wrote
the majority, ``would require the invalidation of a consistent
and almost universal tradition that has long rejected the
asserted right, and continues explicitly to reject it today
even for terminally ill, mentally competent adults.'' In order
to invent this right, the Court, quote, ``would have to reverse
centuries of legal doctrine and practice, and strike down the
considered policy choice of almost every State,'' end quote.
While the decision in Glucksberg left the door open for
States to permit and regulate assisted suicide, it kept it
firmly shut on those who demanded the novel discovery of this
so-called individual right. On a State level, legalized
assisted suicide is still in its infancy in the United States.
Only one State, Oregon, has allowed the practice. Thirty-eight
States have formally criminalized assisted suicide, and seven
more States prohibit the practice under common law.
This reflects a clear, enduring consensus of the people
that assisted suicide is wrong and is objectionable.
Nonetheless, a small but vocal minority have continued to push
States to permit the practice, claiming that assisted suicide
is nothing more than a modern expression of individual liberty.
The Oregon law, which was narrowly approved by voters in 1994,
permits physician-assisted suicide in cases involving competent
terminally ill patients.
According to official reports from doctors assisting
patients who have committed suicide, the Oregon law has
hastened the death of 246 people. Some suggest this number may
be understated because some doctors underreport how often they
have prescribed a lethal dose of medication for the purposes of
assisting suicide. Senator Wyden, from Oregon, will be here to
testify regarding this on the first panel.
Five years ago, the Federal Government determined that the
Oregon law was inconsistent with the Controlled Substances Act,
the CSA. The CSA authorizes physicians to prescribe federally
controlled substances to patients when used for legitimate
medical purpose. It also authorizes the Attorney General to
revoke a physician's prescription privileges if the physician's
actions render his registration inconsistent with the public
interest.
In 2001, then-Attorney General John Ashcroft issued a
directive that physician-assisted suicide, as permitted by the
Oregon law, did not qualify as a legitimate medical purpose
under the CSA. As a result, physicians who prescribed lethal
doses of controlled substances to patients to induce suicide
could be prosecuted and their license to prescribe medicines
could be revoked. The State of Oregon sued in Federal court to
block this interpretation.
In January of this year, the U.S. Supreme Court held in
Gonzales v. Oregon--wrongly, in my opinion, but they determined
that the CSA did not permit the Attorney General to prohibit
doctors in Oregon from prescribing regulated drugs for use in
physician-assisted suicide. In his dissent, Justice Scalia
observed that the Attorney General's directive was an
appropriate interpretation of the CSA. He found it illogical to
consider a prescription of a controlled substance to kill
another person to be a, quote, ``legitimate medical purpose.''
The legalization of assisted suicide and euthanasia would
be problematic for numerous reasons. First and foremost, I
believe the danger involving involuntary euthanasia is shown by
the ominous experience practiced in the Netherlands, and we
will have a witness here today to talk about the Netherlands'
experience. They have legalized assisted suicide and there have
been numerous cases reported of doctors literally killing their
patients without consent.
In 2001, a Dutch doctor was found guilty of murder for
euthanizing a patient, but was given no penalty for his action.
The court said that he made an error in judgment, but acted in
what he believed to be the best interests of his patient. I
think most Americans could be quite disturbed that a doctor
could act with such blatant disregard and lack of respect for
human life, yet not be penalized. Patients who oppose
euthanasia would have much to fear if they could no longer
trust their own doctor. This nightmare scenario is antithetical
to the proper role of a doctor as healer and caregiver.
A second related danger drawn from the Dutch experience is
the slippery slope leading to general disrespect for life,
particularly when it involves the defenseless. Doctors in the
Netherlands moved to allow euthanizing infants with terminal
illnesses, highlighting how assisted suicide and euthanasia
targets the weakest among us.
Such policies devalue the lives of those who are ill and
those with disabilities, but even more insidious is the
devaluation of our own lives when we deem a certain population
as having little worth. If we fail to recognize the significant
contributions to society made by persons with disabilities, the
notions that we are all blessed to be alive, that we are a
compassionate society and that, above all, we are all equal are
all meaningless. I doubt, again, whether Americans want
Government to decide which life is worth preserving and which
can be destroyed.
Finally, expanding the use of assisted suicide would
disregard our considered judgment about self-destructive
behavior, which is that it is frequently a cry for help. It is
for this reason we usually seek to help those who attempt
suicide. Often, it is not death that someone in this situation
seeks, but the reassurance that his or her life means something
and has value. Particularly when one considers the prominent
role played by depression and other psychological conditions,
it cannot necessarily be said that a person seeking physician-
assisted suicide is making a truly independent decision.
There are many important issues related to this topic that
I hope we can explore with our panels today. It is my hope that
we can carve out the proper role for lawmakers in fulfilling
the Government's duty to promoting life and protecting
individual liberties. We have excellent panels of witnesses on
this very important topic. First, of course, we will hear from
the Senator from Oregon, Senator Wyden, the senior Senator from
his State, who has a considered opinion on this and who has
been around the topic a great deal of time. We don't
necessarily agree on it, but I certainly respect him and his
viewpoints and his articulation of those. I look forward to
hearing from him.
We will then hear from a panel that will include Julie
McMurchie, from Portland, Oregon. Next, we will hear testimony
from Hank Reitsema. His grandfather was a victim of legalized
euthanasia in the Netherlands. Last on that panel will be
Jonathan Imbody, a senior policy analyst at the Christian
Medical Association. Mr. Imbody has done significant research
on personal experience with euthanasia in the Netherlands.
On our next panel, we will hear from Wesley Smith, a Senior
Fellow at the Discovery Institute, who has worked on this topic
of euthanasia and has written books on it. Kathryn Tucker is
Director of Legal Affairs at Compassionate Choices in Seattle,
Washington. And then we will hear from Rita Marker, Executive
Director of the International Task Force on Euthanasia and
Assisted Suicide; Ann Jackson, Executive Director of the Oregon
Hospice Association. And, last, we will hear from Diane
Coleman, founder of Not Dead Yet, an organization giving a
voice to persons with disabilities in this debate.
It is a difficult topic, it is a hard topic. It is a topic
involving life and death, choices, and the role of Government,
all of which are integrally intertwined.
We will have Senator Feingold's statement when he gets
here, but first let's go to Senator Wyden. I look forward to
your testimony and your statement.
STATEMENT OF HON. RON WYDEN, A U.S. SENATOR FROM THE STATE OF
OREGON
Senator Wyden. Thank you very much, Mr. Chairman, and let
me first commend you, Mr. Chairman, and thank you for your
thoughtfulness in having me here today. When I asked to testify
because, of course, thousands of Oregonians care so much about
this issue, it probably would have been pretty easy for you to
say, look, time is short and can we do it on another occasion.
But you have always gone out of your way to make sure that a
debate is fair and that those with whom you might disagree,
like myself, on this would have an opportunity to be heard. I
just want you to know how much I appreciate that, and thank you
for your courtesy today.
Chairman Brownback. Thank you.
Senator Wyden. Mr. Chairman, when Oregonians first adopted
the Death with Dignity Act and then defended it on a second
ballot initiative, it seems to me they were sending Government
a clear message. When the American people resisted Government
interference in the tragic case of the late Terri Schiavo, they
too sent their Government a strong message. That message is
that death and end-of-life care is an intensely personal and
private moment, and at those moments the Government ought to
leave its people alone. The Government ought not to attempt to
override or preempt the individual and the family values,
religious beliefs or wishes.
I have said before, and just would repeat it here today, I
personally voted against physician aid in dying both as an
Oregon voter and as a Senator. As the former director of the
Oregon Gray Panthers, a seniors advocacy group, I saw firsthand
how many poor and vulnerable individuals received inadequate
health care. I worried primarily about the adequacy of the
ballot measure safeguards to protect poor older people, and as
a result I voted against the Oregon ballot measure not once,
but twice, as a private citizen.
Despite my personal objections, I firmly believe that my
election certificate doesn't give me the authority or the right
to substitute my personal and religious beliefs for judgments
made twice by the people of our State. I will continue to
strongly oppose any legislative or administrative effort to
overturn or nullify the will of Oregon voters on this matter.
Now, had Oregon acted with haste or without a thorough
examination and debate, I wouldn't be in much of a position to
defend the Oregon law. But certainly nobody can accuse the
people of my State of acting precipitously in approving this
measure. The voters of Oregon did so after two lengthy and
exhaustive debates, Mr. Chairman, that dominates the water
coolers and dinner table conversation of the people of my State
like nothing else.
The issue of physician aid in dying is settled as far as my
State of Oregon is concerned. My State has endured two legal
ballot initiatives, court challenges to stop the implementation
of the law, attempts in Congress to overturn the law, an
attempt to overturn the law through administrative action by
the Federal Government, and finally a challenge that went to
the U.S. Supreme Court. At each stage of this lengthy
discussion, the will of a majority of Oregonians prevailed.
During the eight years the law has been in effect, the
opponents of the law have combed through it to look for
possible pitfalls. However, the law still stands. During the 8
years the law has been in effect, the opponents said that there
would be abuses and that there would be a stampede to Oregon.
The law has not been abused. In fact, over 8 years, an average
of about 30 Oregonians a year have used lethal prescriptions.
This, of course, is a small fraction of Oregonians who faced
terminal illness during that period.
While I do not know how I would vote were the issue to
appear on the Oregon ballot once more, I believe that it is
time at least for me to acknowledge that my fears concerning
the poor elderly were thankfully never realized, and the
safeguards appear to have worked well in preventing potential
abuses.
What is often not discussed by opponents of the Oregon law
is the Oregon Death with Dignity Act has brought about many
improvements that are widely supported by all parties to this
discussion in end-of-life care. For example, pain management
has improved. My State remains the only State to discipline a
physician for the under-treatment of pain. However, perhaps the
most important side effect of the law is that families, health
professionals and patients know they can and should have
conversations about how they want to handle these
extraordinarily difficult end-of-life challenges and what their
wishes are with respect to treatment.
In 1997, the U.S. Supreme Court decided two important cases
that should inform this discussion. The Court, in Washington v.
Glucksberg and in the Vacco case, rejected any constitutional
right of terminally ill patients to physician aid in dying. But
more importantly, the Court in those decisions left the States
free to permit or prohibit assistance in end-of-life matters
such as dying.
Indeed, the High Court encouraged States to proceed with
their various initiatives in this area. So Oregon did, in fact,
exactly what the Court encouraged be done. Historically and
constitutionally, States have always possessed the clear
authority to determine acceptable medical practice within their
borders. States are responsible for regulating medical,
pharmacy and nursing practice. Even the preamble to Medicare
states, ``Nothing in this title shall be construed to authorize
any Federal officer or employee to exercise any jurisdiction or
control over the practice of medicine or the manner in which
medical services are provided.''
The scientific health literature is full of studies
documenting how medical practice differs from region to region,
State to State, and sometimes from medical institution to
medical institution. End-of-life care, in my view, should be no
different.
While other States have considered physician aid in dying
since Oregon passed and implemented the Death with Dignity Act,
they have not adopted it. I respect their choice, Mr. Chairman.
Yet, no one challenged their decisions in court. Neither the
Congress nor the administration attempted to overturn those
decisions. Oregon's decision, reached through legal means,
ought to be respected as well. Fair-weather friends of States'
rights should be reminded that States' rights does not mean
just when you think a State is right.
Mr. Chairman, I want to end by saying that it is my hope--
and that is why I always appreciate the opportunity to talk
with you about these and other issues--that we could find some
common ground here, that we could find some ground where all
sides could come together and thereby focus our efforts on
those kinds of areas.
I know of no member of the U.S. Senate, Mr. Chairman, who
doesn't want to reduce the desire and demand for physician
assistance in terms of working through those difficult
decisions. In order to do that, pain management needs a huge
boost, not another setback. Previous attempts to negate
Oregon's law have damaged pain management in every part of our
country. Even the New England Journal of Medicine editorialized
against that attempt out of concern for the impact on pain
management nationwide. They said many doctors are concerned
about the scrutiny they invite when they prescribe or
administer controlled substances, and they are hypersensitive
to drug-seeking behavior in patients. Patients, as well as
doctors, often have exaggerated fears of addiction and the side
effects of narcotics. Congress would make this bad situation
worse.
It is my view that pain management has a long way to go in
this country, Mr. Chairman. Senator Smith and I introduced
something that we thought could be the bipartisan basis of
bringing people together around this issue, and it is called
the Conquering Pain Act. What Senator Smith and I seek to do is
to help provide families, patients and health professionals
with 24/7 assistance so that no patient anywhere in this
country would be left in excruciating pain waiting for a
doctor's office to open up.
Another area that I think would be ripe for bipartisan
efforts to find common ground is in the Medicare hospice
benefit, Mr. Chairman. I have legislation, the Medicare Hospice
Demonstration Act, to test new ways of bringing hospice
benefits to the patient. For example, Medicare currently
requires terminally ill patients to choose between so-called
curative care and hospice. In plain English, that means that
you can't get hospice benefits unless you give up hope in our
country. That makes no sense, and I contend that people do not
get into hospice soon enough to get its full benefits if they
are forced to make this kind of choice. The idea that I have--
and the Aetna Company is now testing it--would set aside this
either/or choice and allow hospice to begin while the patient
continues with curative care.
Finally, the Nation also has a shortage of providers,
physicians and nurses who are trained in palliative care
essentially, or what is also known as comfort care. The
legislation that I authored here provides funding to assure
that there is a medical faculty trained in comfort care for all
ages. It is a sad fact that not everyone can be cured. As the
number of ways to prolong life multiplies, end-of-life care
issues are going to be more controversial, more difficult and
more painful. The aging of our population will bring more
families face to face with these issues.
I contend that the more that is done to improve end-of-life
care and to help support patient and family decisions, the less
people will turn to physician aid in dying. For the citizens of
Oregon, the Death with Dignity Act has brought about
improvement in many areas and encouraged conversations that
many would not have had. For many, it has brought a small
measure of peace of mind knowing that they can remain in
control of their lives if they choose to do so. It has
decriminalized the end-of-life process.
You can never prove a negative, Mr. Chairman, and I am not
here to offer some kind of scientifically based theory. But I
actually believe in Oregon, because of all of the debate we
have had and because we have seen an increase in the use of
hospice, an increase in the number of folks who spend their
last days at home--I believe in Oregon we have fewer physician
aid in dying cases than in other States where that kind of
action is prohibited.
Mr. Chairman, I know these are deeply personal issues. My
State has chosen a unique path, but rather than pursue a bitter
and divisive debate over physician aid in dying, what I want to
do today, in addition to defending the law that has been
adopted for my State, is to also outline a number of approaches
such as that Senator Smith and I have proposed that could bring
together the Senate and people of differing views on this issue
in a fashion that would be good for our country.
Chairman Brownback. Thank you very much, Senator Wyden, and
thank you for your very thoughtful, very dignified, and
continued effort to try to bring people together on tough
subjects. That is quite laudable and necessary to ever move
much of anything forward and I appreciate it greatly.
Senator Wyden. Thank you, Mr. Chairman.
Chairman Brownback. The next panel will consist of three
panel on the panel, if they could come forward now: Julie
McMurchie, of Portland, Oregon; Hendrick Reitsema from the
Netherlands; and Jonathan Imbody from Ashburn, Virginia.
I am told that Senator Feingold remains on the floor with
an amendment, so we are going to continue to proceed forward.
We will put all of your formal statements into the record, if
you would care to summarize. I would like to run the clock at 6
minutes to give you an idea where you are just so we can get as
much testimony in as possible.
Ms. McMurchie.
STATEMENT OF JULIE S. MCMURCHIE, PORTLAND, OREGON
Ms. McMurchie. Mr. Chairman, thank you for inviting me. I
am here to tell the story of my mother, who used Oregon's law 5
years ago to end her life after a long battle with lung cancer.
I would like to start out by asking that you refrain from
using the term ``suicide'' in this context. I think it demeans
my mother's memory. To paraphrase the mental health amici in
Oregon v. Gonzales, ``End-of-life decisions by terminally ill
patients are in no way related to what is commonly termed
suicide, which is considered to be a self-destructive act often
related to clinical depression.'' My mother was not depressed
when she made the decision to hasten her death.
A decision to hasten death is more accurately parallel to a
patient's thoughtful decision to decline life-sustaining
treatments, a product of judgment and reason based on the
desire to maintain one's dignity in a period where death is
pending. That reason and judgment is fundamentally different
from the reasoning a clinically depressed person uses to
justify suicide.
On January 25, 2001, my mother, Peggy Sutherland, a 67-
year-old lifelong registered Republican, hastened her death
under the rights afforded to her by Oregon's death with dignity
law. I would like to start out today by telling you a little
about her background.
My mother grew up in a very traditional household on the
Philadelphia Main Line. She was raised to do what she was told
and was given little freedom to make decisions for herself. She
did what her parents and society expected of her, and when she
graduate from a women's Ivy League college, she immediately
married my father and supported him while he went through
medical school.
When it came time for my father to decide where to start
his practice, they decided to move to Oregon. My mother had
never been west of the Mississippi and she moved her entire
family across the country based on one photograph of the Oregon
coast.
My mom loved Oregon. She often talked about the constraints
and societal expectations that had burdened her in the East and
how much she loved the free thinkers and independent thought
that she found in Oregon. She was intellectual and practical,
and raised my four siblings and I to evaluate and make our own
decisions and to take care of ourselves.
In January of 2000, my mother was diagnosed with lung
cancer. She had a surgery to remove the tumor and was
pronounced cured, though, of course, she was not. When the
tumor returned a few months later, she had another surgery to
remove her lung. Each of these surgeries was an enormous
undertaking and she had a great deal of pain and long
recoveries.
In June of that year, my mother's sister in Pennsylvania
was also diagnosed with lung cancer. My aunt spent 100 days in
a small hospital room prior to her natural death. Most of that
time, she was in a coma and her three sons did their best to
travel from Seattle, Florida and Geneva to spend time in that
small hospital room.
My mother and I visited my aunt several times and it became
very clear to my mom that she did not want that death for
herself or her family. In August of 2000, she was diagnosed as
terminal and began talking to her children about hastening her
death under Oregon's law. Over the next 4 months, she had
multiple hospitalizations, CT scans, PET scans, bone scans,
chemotherapy, and radiation treatments. I went with her to
almost every one of her doctor appointments and treatment
appointments.
At the same time, though, she very much continued to make
the most of every single day. She stayed very active in her
book club, her bridge club, and in the lives of her five
children and nine grandchildren. I wanted my mom to come and
live with me during her last months, but she really didn't want
to do that. She wanted to be independent. She had a great
apartment overlooking the Williamette River and she loved it
there, and that is where she was most comfortable and that is
where she wanted to be. So I respected that.
One morning in December, my mom woke up and could not get
out of bed because the pain was too great. She was hospitalized
for 3 weeks while we tried to control the pain well enough to
fulfill her wishes and take her to the Oregon coast to die. She
had two M.D. pain specialists attending her during those 3
weeks, and had a morphine pump installed directly into her
spine.
This next point I think is very important. I have two
siblings who are physicians, very sophisticated physicians, and
they are both married to physicians. My mom and dad, while my
parents were divorced when she died, had been married for 40
years and my dad is a cardiologist. My mother had the most
sophisticated medical and palliative care available. She had
more doctors than anyone knew what to do with and we were all
paying very close attention to her care.
I remember very clearly when my mom made the decision to
switch from trying everything to stay alive one more day to
letting go and allowing herself to die. She came home from that
last 3-week hospital stay and made her first request to hasten
her death under Oregon's law. This request was very consistent
with my mom's personality and with the forthrightness and
acceptance with which she had treated her illness and terminal
diagnosis.
My three sisters, my brother and I all immediately
supported her. After watching this disease ravage her body and
after watching the dignity and grace with which she had handled
a terrible year, we all felt she deserved this final bit of
control. She failed rapidly during the 15 days of the mandatory
waiting period under the law. She had been bedridden for 6
weeks and had lost control of her bodily functions. She began
having difficulty breathing because of the tumors growing in
her airways and she began coughing up blood. My sister, who is
a pulmonologist, began to worry that she would hemorrhage in
her lungs and drown.
On the morning of January 25, 2001, my mom made her final
request to end her suffering and use Oregon's death with
dignity law. On that morning, she lay in her own bed, in her
own room, surrounded by her five children, our five spouses,
her remaining sister and a nephew, and her long-time internist
and friend.
We read some poetry. We listened to some music, and she
wanted to hear the 23rd Psalm. We all hugged her, kissed her
and told her how much we loved her. Her final words before she
drank the medication were ``I don't think anyone has realized
how much pain I have been in.'' She drank the medication and
fell peacefully into a coma within 5 minutes. Fifteen minutes
after that, she died.
I feel that my family was given a gift that morning. My
final memories of my mother are profoundly loving and
supportive. May we all be so lucky to die surrounded by those
we love the most in the world. May we all be so lucky to have
the last eyes we see and the last touch we feel be that of our
children.
The inevitability of my mother's death from her disease was
not in question. Her choice to hasten that inevitability was a
reflection of her values and emblematic of the personal freedom
our country prizes. Her choice was not about making that choice
for others, as in euthanasia, nor was it in any way about
demeaning the life of or compromising the rights of people with
disabilities. Her choice in no way degraded or sought to
critique the end-of-life choices that others with different
values make everyday.
On the contrary, my mother would have wanted people with
different values, whether grounded in their religion or
otherwise, to be able to make their own choices about how their
lives come to an end when faced with a terminal diagnosis.
Oregon's law is about preserving those choices for everyone.
Thank you very much.
[The prepared statement of Ms. McMurchie appears as a
submission for the record.]
Chairman Brownback. Thank you for a very touching
statement, and I appreciate your willingness to travel here and
your willingness to give it. That had to be very difficult to
do. Thank you for doing it.
Mr. Reitsema, thank you very much, as well, for traveling
here to speak to the Subcommittee.
STATEMENT OF HENDRICK REITSEMA, ECK EN WIEL, THE NETHERLANDS
Mr. Reitsema. Thank you very much for the privilege of
testifying today, Mr. Chairman. I too agree that dying with
dignity is dying being loved by others. Dignity is something
that is attributed and given, not something that we possess by
ourselves.
It was January 1996 that my Dutch grandfather was
euthanized in an old people's home in the north of the
Netherlands. My family has never quite been the same since
then, and I would like to impress upon you and all present that
policymaking relating to life and death has massive
consequences for all those people involved and the families
around people who are touched by these policies.
Since that event in 1996, I have done my level best to keep
up with the developments in the Netherlands and the policies
relating to euthanasia and physician-assisted suicide. I would
like to share a snapshot of that development and how it has
impacted my own family.
I was visiting my grandfather at the beginning of the week
that he was killed, unaware, as the rest of my family, that a
treatment of morphine overdose and starvation was being applied
to him. My ``opa,'' as I called him, being a rather stubborn
individual and a very devout Christian man, had had a stroke a
couple of years prior to that, and he for that reason was
partially paralyzed on one side and needed the care that you
get in a nursing home.
My grandmother, who lived two street blocks away from this
nursing home, visited him everyday, and many cousins often
visited my grandfather, as did I, because he was an awful lot
of fun to be around, a real patriarch of this close-knit and
large family. It is very unlikely that this man who loved life
so much and was mentally still so much up and with it--he could
play a very good game of cards right up to close before he
died--it is very unlikely that he would have expressed the
desire to die. It would have flown against everything that he
believed.
Yet, the medical staff that surrounded him was working on
what they perceived as providing a speedy and dignified and
painless death, as they saw it. Now, take note that the Dutch
are not some kind of monsters. The fact that we as a society
have embraced euthanasia and assisted suicide is not because we
disrespect life in the first place, but because of the
motivation to fight suffering. The consequences, though, have
been disastrous for many of us.
By the mid-1990's, this kind of procedure, when requested
by ailing patients, was not at all uncommon in Dutch medical
facilities. It all started basically in 1973 with the Geetruida
Postma case, and through a series of court decisions and
medical association guidelines, the parameters for assisted
suicide and euthanasia which proved to be inextricably linked
because of the involvement of the physician and the motivation
to fight suffering--these decisions broadened the parameters to
the situation in 2002 when it was formally legalized.
In that trajectory, a set of criteria were formulated.
Basically, they boil down to patient consent, to suffering that
is unbearable without the prospect of improvement, being well-
informed and consulting at least one independent physician.
In my grandfather's case, it is rather clear that what
happened did not meet these criteria very well, the primary
reason being that what happened in his treatment was not really
being considered euthanasia, euthanasia being reserved only for
active killing with lethal injection under sedation, with the
immediate result of dying. Let's say the extension of using
pain treatment to end life was more what happened in his case.
Let's say the shifting tide in terms of the terminology has
also produced a sort of vague, unclear zone, a gray area where
a lot more people are confronted with physicians making active
decisions about death than those that are reported in the
formal Government reports.
He was diagnosed with lymph cancer in December 1996, and in
January 1996 the doctor decided, when he asked for pain relief
treatment for a thrombotic leg, to instigate progressive
morphine application and subsequent withholding of food. I
visited him and was surprised at how fast he was deteriorating.
At the end of that week, my aunt was visiting and she was
feeding him some water at the moment when one of the nursing
staff said, don't do that, you are prolonging his death. This
was the moment when the family discovered what was happening.
Needless to say, pandemonium broke loose and we tried to
reverse the situation unsuccessfully. He had already contracted
pneumonia from the morphine overdose, which makes your tongue
swell and makes it hard to get the phlegm out. He died the next
day, and the death reason on his death certificate was listed
as pneumonia, not active activity of physicians.
The impact on our family was massive. My father, who had
been living in South Africa for 35 years, at that point already
sometimes feeling guilty for being so far away, had planned a
trip in March the moment he heard that my grandfather was ill.
He never got the opportunity to do that. He had to shift the
ticket to go to a funeral. My grandfather would probably have
had about 3 years to live, given the prognosis. My sister is a
physician and she surmised that it would have been roughly
three years.
In all of this, my grandmother was feeling pressured into
agreeing with some kind of pain treatment she didn't
understand. I find that the most cruel event in what happened
to the family. She agreed because of respect for the medical
profession to whatever the doctors thought was good, not
understanding the exact implications, and later was so
traumatized by it that she for the rest of her life had a heard
time talking about the whole event around my grandfather's
death. She herself in the end moved 200 kilometers, which in
the Netherlands is a long way--that is halfway through our
country--to be in a nursing home herself when she became
infirm, where she would be guaranteed that they would respect
her life. That meant that she had been to be away from all the
people that she had relationships with close to home and it
meant that she was afraid of the medical system.
I think the Dutch legal system has gotten itself into a
catch-22, that of trying to legalize for the sake of fighting
pain and suffering, but in so doing having to provide some kind
of immunity for doctors before they are willing to report their
activity. The result is that only 40 to 50 percent is being
reported at present, and that can hardly be considered an
effective policy.
I thank you for listening.
[The prepared statement of Mr. Reitsema appears as a
submission for the record.]
Chairman Brownback. Thank you for talking about another
tough family situation and the practical events that happen.
Mr. Imbody, thank you for joining us.
STATEMENT OF JONATHAN IMBODY, SENIOR POLICY ANALYST, CHRISTIAN
MEDICAL ASSOCIATION, ASHBURN, VIRGINIA
Mr. Imbody. Senator Brownback, thank you for this privilege
of testifying. I serve as senior policy analyst with the
Christian Medical Association, a professional organization of
17,000 members.
I spent several months in the Netherlands a few years ago
researching personal accounts of euthanasia. I knew from
published medical studies that Dutch doctors admitted, on
condition of anonymity, to putting approximately 1,000 patients
to death a year without the patient's request.
I interviewed Dr. Zbigniew Zylicz, a Polish-born internal
medicine and oncology specialist who practiced in the
Netherlands since 1979. Dr. Zylicz told me about his experience
with an elderly patient in an academic hospital. He said, ``My
patient was afraid to go to the hospital,'' similar to Mr.
Reitsema's grandmother, ``because she was afraid of euthanasia.
She was not asking for this. She did not even want this, and
they promised her that nothing would happen to her. I admitted
her on the weekend to a bed of another patient who would be
coming back Monday morning. I had no other facility for her.
She was very ill and I expected she would die on the weekend,
but she improved. With good treatment and pain control, she
started to talk and she was not dead. On Monday morning when I
went off my shift and went home, my colleague came and did
something. I don't know exactly what he did, but she died
within 10 minutes. And the nurses called me at home. They were
very upset about this and I was very upset about this, too. Dr.
Zylicz added, and this was not the only single case. This was
the whole system working like this.''
The Dutch have a lot of faith in their dikes and in their
regulations, but euthanasia introduces dangerous gray areas of
decisionmaking by doctors and by vulnerable patients who feel
pressured to die. These gray areas defy regulation.
I interviewed a Dutch couple, Ed and Xandra, who told me
about Ed's father, Franz. Franz was a Dutch sailor who had
reluctantly entered the hospital for pain relief. The doctors
discovered that Franz had a terminal illness.
Franz's son, Ed, recalls, ``We were all invited to the
hospital when [the doctors] said the diagnosis. The doctors
told my dad, well, you don't have too long to live. We can't
guarantee anything, but if we operate, you could live longer
and have more time to be with your kids.'' Ed recalls, ``When
the doctors left, my sister said it very bluntly, just putting
it on the table. `What about euthanasia', she said.''
Franz's wife didn't protest. Xandra suggests that is
because Franz's wife was angry with him and thought Franz had
been unfaithful in their marriage. So Franz agreed to
euthanasia.
Xandra remembers the day the doctor came to put her father-
in-law to death. She said, ``[The doctor] had all those little
vials, and she had two injections, one to put him to sleep and
one for the killing part. She was, OK, I need to do this now.
Probably, she had another appointment after that.''
``Then she started injecting him,'' Xandra recalls. ``While
she was giving the injection, I was standing at my father-in-
law's feet. He was really looking at me and at our baby. I was
holding the baby at the time.'' Then Xandra says her father-in-
law suddenly cried out. He said, ``I don't want to die.''
Xandra frantically looked to the doctor and at the others
in the room, ``but no one was reacting,'' she recalls. She
didn't know what to do. ``And then,'' she says, ``he was like
he was in a deep sleep. So then the doctor started getting the
other injection. Then I left the room.'' Franz died from that
second injection, whether he really wanted to or not.
Once a country casts off millennia of Hippocratic and
Judeo-Christian prohibitions against suicide and euthanasia,
the ship drifts farther and farther out to sea with no anchor.
If we assume the power to kill patients who ask for it, why not
kill disabled patients who cannot ask for it? If we assume the
power to kill patients with physical illnesses, why not kill
patients with emotional illnesses? If we assume the power to
kill the elderly who have medical problems, why not kill
infants who have medical problems?
This slippery slope is not theoretical. This is exactly
what has happened in the Netherlands, and it can happen
anywhere unless we provide truly compassionate alternatives to
state-sponsored suicide. More doctors need advanced training in
palliative care. In certain cases, more aggressive pain relief
prescribing regulations will help doctors provide more
effective relief for patients. Hospice care can provide
tremendous benefits for patients and families.
And this is something on which I think we all agree:
Perhaps the most important help for terminally ill patients
transcends medicine. The unconditional, persevering love of
family, friends and God can provide us with incomparable
strength, courage and hope beyond our physical condition.
Thank you.
[The prepared statement of Mr. Imbody appears as a
submission for the record.]
Chairman Brownback. Thank you very much, Mr. Imbody. Mr.
Imbody, did you do a full report on the series of interviews
that you did in the Netherlands?
Mr. Imbody. I have not. I have written a few articles, but
I have not put it together in a full report.
Chairman Brownback. If you wouldn't mind submitting for the
record the articles, I would appreciate it, because if you did
a series of interviews, it would be, I think, a good
accumulation of information for us to be able to have as an
examination for the Committee.
Mr. Imbody. I will.
Chairman Brownback. The Netherlands situation, Mr.
Reitsema, you said started in 1973 when the law passed, or was
it a court interpretation? What happened in the Netherlands?
Mr. Reitsema. It was a court interpretation where a
physician aided her mother in killing her mother, euthanizing
her. And the court, though they found her guilty of the crime
of euthanasia, only applied a 1-week suspended sentence to her
at that point. And this was the start of the courts giving a
signal that as long as the criteria which the colleagues
testified to in that court case, the physician colleagues of
the physician involved--as long as those criteria of, let's
say, careful due process were being held to, the courts would
then not litigate against or apply penalties against. So there
was this development.
The Dutch know more policy areas where we have what we call
hedogbleit; i.e., something is formally illegal, but with a
series of court decisions showing there will not be
prosecution, it creates space for people as long as they are in
contact with the Ministry of Justice and short of checking up--
Chairman Brownback. So you can do it. It is illegal, but
there is no penalty?
Mr. Reitsema. Illegal, but no penalty, and to a certain
extent having the blessing of the Ministry of Justice.
Chairman Brownback. This started in 1973 and then has
been--
Mr. Reitsema. 1973, and slowly progressed right until 2002,
where those criteria, basically the same criteria which were
formulated then, became law, formalized law. Just in this last
year, at the end of 2004 going into 2005, we have had the same
process happening with infanticide where these basic criteria,
save for patient consent, because babies are not capable of
that, have been applied to infants in cases of unbearable
suffering, et cetera.
So the Department of Justice has agreed to not prosecute
doctors as long as they stick within the parameters of this set
of criteria. The Department of Justice has no intention of
formally legalizing euthanasia for babies, or infanticide, at
this point.
Chairman Brownback. How many cases of euthanasia a year now
in the Netherlands? If you know particularly those of infants,
I would like to know the number.
Mr. Reitsema. I will start with the question of adult
euthanasia. It depends upon how you define euthanasia. The way
the Department of Justice is defining it, there are about 3,500
cases of assisted suicide and euthanasia.
Chairman Brownback. In a population of how many?
Mr. Reitsema. In a population of 17 million people. If one
includes terminal sedation, as it is being called, which means
putting somebody into a subconscious sleep state and not
feeding them artificially, which is the only way you can feed
somebody who is sedated, that number would increase to be about
14,000 people of, let's say, the formally registered, which is
about 10 percent of all deaths in the Netherlands. So about 10
percent of all deaths in the Netherlands at the moment have a
physician-assisted component in the killing. That would be
equivalent to about 420,000 people in the USA if you would
compute it on the population here.
Chairman Brownback. And infants?
Mr. Reitsema. In infants, there is a report between 1997
and 2004 where 22 cases were formally reported over that whole
period. Government studies show that there are about 20 cases,
where an independent British medical journal study shows that
there were almost 100 cases, 20 with lethal injection and 80 by
the withholding of food and the necessary means to stay alive.
So probably about 100 per year is an accurate figure.
Chairman Brownback. Do we have other countries to track
that have had this much experience with euthanasia. The
Netherlands is well-known. To me, it is always worthwhile to
look at what has been the experience of other countries.
Mr. Reitsema. The Netherlands is unique in terms of the
length of history with these policies, but a country like
Belgium has similarly legalized up to a certain extent. The
numbers in the Belgian situation are much lower than in the
Netherlands.
Chairman Brownback. I want to thank the panel, and
particularly, Ms. McMurchie, on your closeness to the
difficulty. My apologies for language used that offended you. I
did not intend to do that and I apologize to you for that.
One of my biggest concerns here is where does this go once
you start in it, and that is why the questioning here. And if
you want to respond to that, I would be happy to have you
respond to that point, because when you start down these policy
roads, that is always a point you are really wondering at the
end of it. Where does this go to? A lot of times, we are just
trying to do what is good right, and then you get 20 years down
the road and you ask how did we get here.
Ms. McMurchie. Oregon's law has very defined and very clear
safeguards to keep us from approaching that slippery slope. As
you said--and Kathryn Tucker can talk more about this; she
knows a lot more than I do--in the Glucksberg case, it was sent
back to our State as a test tube, if you will, to see how those
safeguards would work, and it has worked beautifully.
There have been zero reports of abuses, zero reports of
coercion in this law. It is very much the individual's choice.
The safeguards include waiting periods, specific requests made
both in writing and verbally. The medication has to be self-
administered. My mother had to be able to hold that medication
in a glass by herself and drink it by herself. We couldn't
touch it. And that is what she did.
There has just been nothing to suggest that any of these
fears--I mean, euthanasia is such a completely different issue
than Oregon's aid in dying law, completely different, and I
have great respect for that difference. This is very much a
personal choice about one's own impending death. This isn't
about anyone trying to coerce a disabled person. It is not
saying anything about a disabled person's life or the value of
that life whatsoever. It has nothing to do with that. It is an
individual person's choice.
We keep a lot of data in Oregon and Compassion and Choices
has a lot of data about the motivations that the individuals
that use the law or request the law--the motivations that cause
them to do so, and it is all about autonomy and enjoying life
and a little bit about pain control. It is not about money. It
is not about anything other than that personal choice.
Chairman Brownback. I appreciate that. The concern is that
the Netherlands came into this by a daughter trying to help her
mother in a difficult situation, and then you are 30 years out
and you have got the kinds of numbers even on infants that you
are looking at. When you enter that policy field and you are
saying, OK, we are going to say this is all right, where do you
end up?
Ms. McMurchie. But they take the choices away from the
individual, which we do not at all in any way do.
Chairman Brownback. I thank the panel very much.
Ms. McMurchie. Thank you very much.
Chairman Brownback. I will call up Wesley Smith, a Senior
Fellow at the Discovery Institute; Kathryn Tucker, Director of
Legal Affairs, Compassion and Choices; Rita Marker; Ann
Jackson; and Diane Coleman.
If I could ask this panel if you would stick to the
timeframes, we have got a large panel and I am told a vote in
45 minutes and I would like to conclude this by that period of
time. So if we could stay with your timeframes, I would
certainly appreciate that.
Mr. Smith, thank you for joining us.
STATEMENT OF WESLEY J. SMITH, SENIOR FELLOW, DISCOVERY
INSTITUTE, CASTRO VALLEY, CALIFORNIA
Mr. Smith. Thank you, Senator Brownback, for having me. I
appreciate it very much. I will omit my biographical data,
since it is attached to my written testimony, and go right into
the presentation.
Chairman Brownback. Please, and all of your written
testimony will be included in the record, so you can summarize.
Mr. Smith. Thank you.
I appear today to argue that there is a proper public
policy role for the Federal Government against assisted
suicide, such as prohibiting federally controlled substances
from being used to intentionally end life and in the
application of other Government policies consistent with the
standards of federalism. This would be in keeping with the
existing Government policy that prohibits Federal money from
being used to fund assisted suicide under the Medicaid program.
There are two deep ideological beliefs asserted by
advocates for justifying the legalization of assisted suicide.
The first is a radical individualism that perceives personal
autonomy as being virtually absolute, as including the
individual's right to self-determination, including a right to
control the time, place and manner of death. The second
ideological principle underlying assisted suicide is that
killing, which simply means ending life--that is descriptive--
can be an acceptable answer to the problem of human suffering.
Assisted suicide advocacy in the U.S. is usually couched in
terms that would limit assisted suicide to those who are
terminally ill. But given the philosophical and ideological
principles that underlie the assisted suicide movement that
autonomy is paramount and killing is a valid answer to human
suffering, restricting assisted suicide to the dying becomes
utterly illogical. After all, many people experience far
greater suffering and for a far longer period than people who
are terminally ill.
Thus, once the premises of assisted suicide advocacy become
accepted by a broad swath of the medical professions and the
public, there seems little chance that the eligibility for
permitted suicide will remain limited to the terminally ill. We
need only look to the experience of the Netherlands to see the
destructive force that the implacable logic of assisted suicide
ideology unleashes.
The Dutch have permitted euthanasia and assisted suicide
since 1973, when it was, in essence, decriminalized by a court
ruling so long as certain protective guidelines were followed.
And as you heard, they were formally legalized in 2002. In
actual practices, these guidelines have provided scant
protection for the weak, vulnerable and despairing.
Indeed, since 1973, Dutch doctors have gone from killing
terminally ill people who ask for it, to chronically ill people
who ask for it, to disabled people who ask for it, to people
who aren't sick but depressed who ask for it. The assisted
suicide of depressed people was explicitly approved by the
Dutch supreme court in the death of Hilly Bosscher. Bosscher
wanted to kill herself because she had lost her two sons.
Bosscher had one desire left in life, which was to be buried
between her two dead children.
Her psychiatrist, Dr. Boudewijn Chabot, met with her on
four occasions without attempting to treat her. Believing her
to be suffering from what he called incurable grief, he helped
Bosscher kill herself. The Dutch supreme court validated
Chabot's actions on the basis that the law cannot distinguish
between suffering caused by physical illness and suffering
caused by mental anguish.
In the Netherlands, infants are killed by doctors because
they have birth defects. A 1997 study published in the British
medical journal, the Lancet, revealed how deeply pediatric
euthanasia had implanted itself into Dutch neo-natal medical
practice. And as you heard, that amounts to almost 100 babies
per year.
Dutch doctors also euthanize people who have not asked to
be killed. This practice even has a name--termination without
request or consent. Dutch Government studies show that at least
900 such people are killed each year, and even though this is
murder under Dutch law, virtually nothing meaningful is ever
done about it.
The Netherlands is a very small country, Mr. Chairman, with
about 130,000 total deaths per year. We are not small. About 2
million of us die each year. To see the death toll that would
occur in the United States if assisted suicide became
normalized, we need only apply Dutch euthanasia statistics to
the United States population, and these are older statistics in
which fewer people were being euthanized based on the Remmelink
report of 1990.
In that year, 2,700 patients were euthanized or assisted in
suicide by their doctors upon request. We are not talking about
involuntary or nonvoluntary--upon request. Based on our higher
population, the equivalent number of deaths by assisted suicide
in the United States would be approximately 41,500 hastened
deaths per year. Clearly, the stakes for America's seriously
ill, disabled and elderly patients in this debate are very high
indeed.
I would like to finish my testimony by quoting a friend of
mine who died of ALS. His name was Bob Salamanca, and I met him
as a hospice volunteer. I had been a hospice volunteer. I was
trained specifically as a hospice volunteer that if any patient
was suicidal, I was to tell the team so that intervention could
be done to prevent the suicide--suicide prevention, which
almost always works when it is actually applied. It doesn't
always work, but it quite frequently does.
Bob Salamanca was quite aware of the debate about assisted
suicide, and he was spitting nails because what he said was,
you know, if somebody has one situation for wanting suicide,
the state will prevent it, but if I ask for suicide, some
people say the state should permit it to be facilitated. And he
wrote a piece in the 1997 San Francisco Chronicle and this is
what he said, and I would like his voice to be heard.
``Euthanasia advocates believe they are doing people like
me a favor. They are not. The negative emotions toward the
terminally ill and disabled generated by their advocacy is
actually at the expense of the dying and their families and
friends, who often feel disheartened and without self-assurance
because of a false picture of what it is like to die created by
these enthusiasts who prey on the misinformed. What we the
terminally ill need is exactly the opposite, to realize how
important our lives are, and our loved ones, friends, and
indeed society need to help us to feel that we are loved and
appreciated unconditionally.''
Bob Salamanca died peacefully in his sleep of Lou Gehrig's
disease. I gave his eulogy, and he would be so proud today to
be able to have testified in front of this panel.
Thank you.
[The prepared statement of Mr. Smith appears as a
submission for the record.]
Chairman Brownback. That is very powerful, very good.
Professor Tucker.
STATEMENT OF KATHRYN TUCKER, DIRECTOR OF LEGAL AFFAIRS,
COMPASSION AND CHOICES, AND AFFILIATE PROFESSOR OF LAW,
UNIVERSITY OF WASHINGTON SCHOOL OF LAW, SEATTLE, WASHINGTON
Ms. Tucker. Thank you. Good afternoon. Thanks for inviting
me to testify at this important hearing. As Legal Director for
Compassion and Choices, I speak on behalf of our supporters who
strongly believe, as do a majority of Americans, that dying
patients should be empowered to control their dying process.
Even with excellent pain and symptom management, a fraction
of dying patients will confront a dying process so prolonged
and marked by such extreme suffering and deterioration that
they determine that hastening their own impending death is
their least worst alternative.
I represented the patients in the Glucksberg and Quill
cases and in the Oregon v. Gonzales case, so I do know a bit
about this area. In Glucksberg and Quill, the terminally ill
patients and physicians brought action against the States of
Washington and New York for States laws that criminalized so-
called assisted suicide to the extent that it would apply to a
mentally competent, terminally ill patient who wanted to
control the time and manner of death.
They sought the right to do so under the Federal
Constitution. Those claims were successful in both the Second
and Ninth Circuit Courts of Appeals. The U.S. Supreme Court
refrained from finding a Federal constitutional right in 1997,
believing that the issue should be left to the States in the
first instance. And the Court's decision encouraged the earnest
and profound debate about the matter to continue.
Eight years of experience in Oregon--Ann Jackson will
testify to that. I won't speak in great detail in deference to
her testimony. However, I will say that with this 8 years of
experience, objective observers nationwide have now published
studies and publicly spoken out that what we can see from
Oregon is that--and here is a quote from the State of Vermont
examining this question, quote, ``It is quite apparent from
credible sources in and out of Oregon that the Death with
Dignity Act has not had an adverse impact on end-of-life care,
and in all probability has enhanced other options.''
The Director of Bioethics at Pennsylvania Medical School,
an objective outside observer, said after reviewing the Oregon
data, quote, ``I was worried about people being pressured to do
this, but the data confirms that the policy in Oregon is
working. There is no evidence of abuse, coercion or misuse.''
Just recently this term, the American Public Health
Association submitted an amicus brief to the U.S. Supreme Court
in the Gonzales v. Oregon case in which the group advised the
Court that researchers have consistently found that the
experience in Oregon does not bear out concerns that physician-
assistance would be disproportionately chosen by or forced on
terminally ill patients who are poor, uneducated, uninsured, or
fearful of financial consequences of their illness.
Terminally ill Oregonians do not choose assisted dying
because they have untreated pain. On the contrary, Oregonians
have access to good pain and symptom management. Only the
relatively few who find that the cumulative burden of their
illness is intolerable persist in the desire to hasten death
and go on to use the Dignity Act.
Nationwide, although Oregon is yet the only State to
legalize this option, support is wide and deep. All of the
polling shows 65 or 70 percent of Americans support this choice
and would like to see it enacted in their own States. Recently,
in California, which is a State considering a similar measure,
70 percent of Californians across all demographics, all
religious groups, all ages, support the idea that incurably ill
patients have the right to ask for and receive life-ending
medication. I should say that that is the California
Compassionate Choices Act that is pending.
Support is found among persons of diverse religious faiths.
In the Oregon v. Gonzales case, an amicus brief was filed by a
religious coalition which advised the Court as follows, quote,
``Numerous faiths, religious organizations and religious
leaders strongly support physician-assisted dying as an
entirely legitimate and moral choice.''
Support is also strong among physicians, with all polling
showing a majority of physicians favoring patients being
empowered to make this choice for themselves. And all of my
written testimony has citation to those studies. Mental health
professionals also recognize that dying patients can choose to
hasten impending death and be fully mentally competent and, in
fact, be acting to preserve sense of self. Again, an amicus
brief submitted in the Gonzales case details that and I quote
that at length in my written testimony.
Although only legal in Oregon, there is a widespread back-
alley, underground practice where patients want the freedom to
make this choice and they have to turn to the back alley. Many
studies document this and many patients and families have
spoken of this publicly.
What happens when a patient cannot find a physician who
feels safe in discussing this and helping the patient is the
patient often acts alone with violent or uncertain means or
calls on family members. And there was a dramatic case in
Connecticut just this past year exemplifying that. The amicus
brief in the Quill, Glucksberg and Gonzales cases of surviving
family members speaks to that experience as well--the stories
of loved ones who didn't have access or authority to empower
their own decisionmaking at end of life, a very different story
than you heard from Julie McMurchie today about a peaceful
death at home, in bed, with loved ones present in a peaceful
and humane manner.
The question is not whether assisted dying will occur, but
rather whether it will occur in a regulated and controlled
fashion with safeguards and scrutiny or whether it will occur
covertly, in a random, dangerous, unregulated manner.
In conclusion, in the Glucksberg and Quill cases, the Court
recognized that Justice Brandeis' concept of the States as
laboratories was particularly applicable to physician-assisted
dying. The Court's conclusion in those cases that the Federal
Constitution does not bar States from prohibiting the practice
rested in a reluctance to reach a premature constitutional
judgment that would cutoff the process of democratic
decisionmaking.
It is timely, prudent and humane for States to enact laws
to empower terminally ill, mentally competent adult citizens to
control the timing and manner of their deaths by enabling them
to obtain medications from their physicians that could be self-
administered to bring about a peaceful and humane death,
subject to careful procedures. Passage of such a law harms no
one and benefits both the relatively few patients in extremis
who make use of such a law and a great many more who draw
comfort from knowing this option is available should their
dying process become intolerable.
Thank you, Mr. Chairman.
[The prepared statement of Ms. Tucker appears as a
submission for the record.]
Chairman Brownback. Thank you, Professor.
Ms. Marker, thank you for joining us.
STATEMENT OF RITA L. MARKER, EXECUTIVE DIRECTOR, INTERNATIONAL
TASK FORCE ON EUTHANASIA AND ASSISTED SUICIDE, STEUBENVILLE,
OHIO
Ms. Marker. Thank you for inviting me to be here today and
to testify.
In 1994, Oregon transformed the crime of assisted suicide
into a medical treatment when it passed the Death with Dignity
Act. In November of 2001, Attorney General John Ashcroft issued
an interpretive ruling, known as the Ashcroft Directive, in
which he stated that doctors could risk losing their Federal
registration to prescribe federally controlled substances if
they did so for the purpose of suicide. He based that ruling on
the fact that he interpreted prescribing for suicide as being
not in the public interest and that such prescribing would not
be a legitimate medical purpose under the Controlled Substances
Act.
Contrary to widespread misunderstanding, the Ashcroft
Directive, if it had been upheld, would not have overturned
Oregon's law. Assisted suicide would still have been legal in
Oregon. Doctors could still have carried it out. Doctors could
still have prescribed any of a number of other prescription
drugs that were not federally controlled.
Now, as you have heard, the directive was immediately
challenged, and in January of this year the U.S. Supreme Court
found that the Attorney General had actually exceeded his
authority when he issued his directive. However, that decision
was not an endorsement of Oregon's law. It was a very narrow
decision and it was based on the fact that the Controlled
Substances Act does not explicitly prohibit prescribing for
suicide and does not explicitly state that such prescribing of
federally controlled substances for suicide is not a legitimate
medical purpose. But the Court was clear that if Congress
wishes to make such an explicit statement, it can definitely do
so by explicit language in the statute. So it is up to Congress
to decide.
Now, it helps to examine a bit more what is happening in
Oregon, and we do hear about the safeguards. We hear a lot
about that. In fact, the Court even referred to some of those
safeguards, so why don't I just go over a few of the so-called
safeguards that are in the Oregon law.
One is reporting, and that was intended to prevent abuses
and to assure that there would be compliance. In the annual
reports, it is found that there were 246 reported cases of
assisted suicide in Oregon since it went into effect. However,
those numbers may or may not be accurate. As Dr. Katrina
Hedberg, who is no opponent of Oregon's law--she was one of the
lead authors in most of the official Oregon reports--she had
said there is no way to know if additional deaths were
reported, and she said that there is no way to know because
there is no regulatory authority or resources to ensure
compliance with the law.
Likewise, as far as complications, Dr. Hedberg said that
not only do we not have the resources to investigate, but we
don't have the legal authority to do so. All information in the
annual reports, the reports that sound so glowing, actually
come from the very doctors who are doing the prescribing. As
the State of Oregon said in its first official summary, we just
have to assume that doctors are being their usual careful,
accurate selves, but we have no way of knowing if the
information is accurate or complete.
Then there is the whole requirement that patients be
referred for counseling if their judgment is impaired, if the
physician believes that to be the case. Well, in fact, in each
of the last 3 years, only two patients have been referred for
counseling before getting the prescription for the lethal
drugs.
But even more importantly, the State of Oregon's Death with
Dignity Act refers to what happens when the prescription is
written, but there is no requirement that the patient be
competent at the time the prescription is filled or taken. And
again, as Dr. Hedberg said, the law itself only provides for
the writing of the prescription, not what happens afterwards.
A final safeguard that is mentioned is that the patient to
be qualified has to have a six-month life expectancy or less.
But according to Dr. Peter Rasmussen, who acknowledges having
participated in suicide deaths under Oregon's law in the double
digits, he said the prognosis is undoubtedly inaccurate. His
exact words were that ``We can easily be one hundred percent
off.'' He said we could say 6 months, but it could really be
12, but he said I don't think this is a problem. Well, so much
for that safeguard.
When you get right down to it, the safeguards are mere
illusions. They are about as protective as the emperor's new
clothes. So the question is, is it the intent of Congress to
have federally issued registrations to prescribe federally
controlled substances used in this manner? It is obviously up
to Congress.
The CSA can be amended. Congress has never endorsed
suicide, as you well know, and went a long way in refusing to
facilitate it by passing the Assisted Suicide Funding
Restriction Act of 1997. This precludes the use of Federal
funding for suicide. It does not prevent using State money for
it and, in fact, the State of Oregon uses State money for
suicide.
Likewise, Congress can say Federal registrations to
prescribe federally controlled substances may not be used for
the purpose of suicide. This would indeed leave States to
permit doctors to use their medical licenses, which are run by
the State, to prescribe other substances.
In closing, I want to just mention a couple of facts about
suicide. By the way, suicide, as it is being used here and as I
am using it, is just very explicitly meaning the act or
instance of taking one's own life voluntarily or intentionally.
That is not emotionally charged or value-laden.
In the United States, in 1999, the Surgeon General actually
announced that suicide had become a serious public health
problem. As of 2004, there were twice as many suicides per year
as homicides in the United States. When Congress last amended
the CSA in 1984, it could not have envisioned that it would be
considered appropriate to use a Federal registration to
prescribe for the purpose of suicide. Congress can easily
remedy this and it is up to Congress.
Thank you very much, and I stand ready to assist in any way
or answer any questions.
[The prepared statement of Ms. Marker appears as a
submission for the record.]
Chairman Brownback. Thanks, Ms. Marker. I appreciate that.
Ms. Jackson, thank you for coming.
STATEMENT OF ANN JACKSON, EXECUTIVE DIRECTOR AND CHIEF
EXECUTIVE OFFICER, OREGON HOSPICE ASSOCIATION, PORTLAND, OREGON
Ms. Jackson. Yes, thank you very much for inviting me to
join you today. I have been Director of the Oregon Hospice
Association for the past 18 years. OHA is a charitable public-
benefit organization whose goal is to make sure that all
Oregonians can have high-quality care, care that is consistent
with their personal values when facing a life-threatening
illness. I am a co-investigator of research concerning hospice
workers' experiences with Oregon's Death with Dignity Act and
with hastening death.
In January of this year, the U.S. Supreme Court ruled, as
we have mentioned before, that it was the States, not the
Justice Department, that have the authority to regulate medical
treatment for the terminally ill. OHA was relieved by the
Supreme Court's decision, not because we support or oppose the
Death with Dignity Act, but because a decision in favor of the
Justice Department would have added to the chilling impact that
regulatory scrutiny has on pain management, and because a
decision against Oregon would have interrupted important
research in our laboratories of the States without good reason.
In fact, in the first 8 years, the Act has been very
responsibly implemented. None of the predicted dire
consequences has occurred. Reports issued by the State of
Oregon, as required and supported and augmented by numerous
independent studies, are closing a data void. Assisted dying
has never before been practiced in a legal environment. We are
learning from this wealth of knowledge, applying it to approved
end-of-life care in Oregon, and it is knowledge that has
application well beyond our borders.
We have learned that physician-assisted dying is not
disproportionately selected by those who lack financial
resources, health insurance, family support, or education.
These individuals tend to be more highly educated, have as much
or more social support and adequate financial means. Only two
have not had health insurance.
We have learned that assisted dying is not
disproportionately used by minorities or the disabled. While
fearing pain is a concern, experiencing pain is not a factor.
Assisted dying is not used by people without access to hospice
and palliative care. Every Oregonian has access, even in the
most remote and rural areas of the State. Every Oregonian has
access to all legal end-of-life options, regardless of who they
are or where they live in Oregon.
We have learned that Oregon's hospice workers strongly
support a dying Oregonian's right to choose from among all end-
of-life options. We have learned how important it is for them
to set aside their own needs, as health care professionals must
often do, to meet the needs of their patients. We have learned
that depression is not an important factor. Hospice workers
rank depression and financial concerns among the least
important reasons an individual will ask for or use a
prescription.
Mental health referrals have declined because physicians
routinely refer patients to hospice. Psycho-social and mental
status is constantly assessed, addressed and monitored by
hospice social workers and the hospice team.
Hospice workers have noted that violent suicide among
hospice patients, rare in the past, is virtually non-existent
now. Suicide rates in Oregon have always been among the highest
in the Nation, but not among the dying at this time. Having
health insurance is not an issue. Oregon's hospices provide
care without regard to a patient's ability to pay. In addition,
hospices can identify at admission individuals as immediately
eligible for the Oregon health plan's hospice benefit.
The perspective of hospice workers is important. They visit
patients and family caregivers often in the last weeks of life
and can compare hospice patients who ask for a prescription
with those who do not. Almost all who have used assisted dying
have been offered hospice and 90 percent were enrolled.
Patients' physicians identify autonomy, the ability to
enjoy life and loss of dignity as primary concerns of those who
use assisted dying in Oregon. Hospice workers consistently
identify controlling circumstances of death, loss of dignity
and the desire to die at home as the most important reasons.
Oregon's home death rate is the highest, its hospital death
rate the lowest. Eighty percent of Oregonians have an advance
directives and they are followed. When the POLST, physician
orders for life-sustaining treatment, is in place, respect for
wishes is virtually one hundred percent. The POLST, which was
developed in Oregon, is being adopted throughout the country.
Hospice utilization is and has been among the highest in
the country. In fact, Oregon was declared the national leader
in end-of-life care in 1998, just before the Death with Dignity
Act was implemented, and maintains its position as the leader
today. It is not true that the quality of hospice and
palliative care in Oregon has suffered. Only 246 individuals,
not thousands, have ended their lives under provisions of the
Act--246 of 240,000 Oregonians who died in the same period.
A study published in 2004 revealed that just 1 of 200
individuals who considers assisted dying and 1 of 25 who makes
a formal request will actually use a prescription. Oregon's
hospices describe as typical an individual who asks for a
prescription on day 1, becomes qualified on day 15, and because
he has a plan for his worst fears, is able to get on with life.
That the Oregon law is available, regardless of whether it is
used, offers great comfort.
One explanation for the very low rate may be the high
quality of hospice and palliative care in Oregon. Oregon's
hospices recognized early in the public debate that hospice
support, or the lack of it, would be a determining factor in
whether a patient would choose to hasten death. Hospice
addresses most fears identified by the public as reasons for
supporting the legalization of assisted dying.
But autonomy and control, not uncontrolled symptoms, are
the reasons people use a prescription. The medical community
has not taken such preferences into great consideration in the
past. But those are among the few reasons Congress should
consider carefully before it takes further action against
Oregon. The Oregon Hospice Association would like to think that
Congress will consider the potential repercussions on pain
management and end-of-life care. Even a proposed law can have
an immediate effect of undermining physician willingness to
prescribe controlled substances, as we saw in its previous
attempts to compromise Oregon's law.
Chairman Brownback. Ms. Jackson, we are going to start
wrapping it up. I just want to make sure we get some time--
Ms. Jackson. Yes, I am.
The Oregon Hospice Association would prefer to think that
Congress will recognize and respect the Supreme Court's belief
in the value offered in the laboratory of the States.
Thank you.
[The prepared statement of Ms. Jackson appears as a
submission for the record.]
Chairman Brownback. Thank you, Ms. Jackson.
Ms. Coleman.
STATEMENT OF DIANE COLEMAN, PRESIDENT, NOT DEAD YET, FOREST
PARK, ILLINOIS
Ms. Coleman. Thank you for the opportunity to address the
Subcommittee on behalf of Not Dead Yet, a disability rights
group that opposes legalization of assisted suicide and
euthanasia.
The first thing I want to emphasize is that I am sick and
tired of the ways that the culture war has been used to exclude
and marginalize the disability community in the public debate
on these issues. I am sick and tired of our opponents on the
family privacy issue--
[Applause.]
Chairman Brownback. Please, no outbursts. I appreciate
people's opinions, and everybody is certainly entitled to that,
but let's not have an outburst here.
Ms. Coleman.
Ms. Coleman. I am sick and tired of our opponents on the
family privacy issue, often our progressive allies on other
issues, who talk about the Schiavo case as a conservative
travesty and over-simplify the dangers facing people who depend
on others for basic needs.
The most common elder guardians are the spouse and adult
child, who are also the most common perpetrators of elder
abuse. If we were talking about child abuse, everyone would
admit that there is a legitimate role for Government
intervention, carefully balanced against privacy rights. Do
people in guardianship deserve less?
Nor can we trust State courts as the final word. If we were
talking about death penalty, most would admit that the courts
are far from infallible and that a right of Federal review is
an important protection for the constitutional rights of the
accused. Do people in guardianship deserve any less?
I am also sick and tired of our allies on this issue, often
our conservative opponents on other issues, who see assisted
suicide and euthanasia as violating their principles, but see
no contradiction as they slash budgets for the health care we
need to survive. This is nothing less than back-door
euthanasia.
Assisted suicide is supposedly about terminal illness, not
disability. So many question the legitimacy of disability
groups meddling and trying to take away what they see as the
general public's right to choose assisted suicide. The real
issue is the reasons people ask for and doctors give assisted
suicide.
Although intractable pain was sold as the primary problem,
it is really a bait-and-switch. The reasons doctors actually
report are the patient's loss of autonomy, loss of dignity,
feelings of being a burden. Unfortunately, popular culture has
done virtually nothing to educate the public about how people
with severe disabilities actually live autonomous and dignified
lives. Our lives are portrayed as tragedies or sensationalized
as heroism, but the real-life issues and coping styles that
most people will need if they live long enough are left out of
the picture. No wonder people who acquire disabilities so often
see death as the only viable solution.
Disability concerns are focused on the systemic
implications of adding assisted suicide to the list of medical
treatment options available to seriously ill and disabled
people. The disability rights movement has a long history of
healthy skepticism toward medical professionals who are
assisted suicide's gatekeepers, which has grown to outright
distrust since managed care took over.
But perhaps the most important question is not whether the
rights of the few people who request assisted suicide and get
it have been compromised, though that is a concern, but whether
legalizing these individual assisted suicides has a broader
social impact.
Does it matter that a society accepts the disability-
related reasons that people give for assisted suicide, declares
the suicide rational and provides the lethal means to complete
it neatly? Does it harm people who are not deemed eligible for
assisted suicide under the current version of the law, but
still experience the same sense of loss?
I think we should look at the fact that Oregon has the
fourth highest elder suicide rate in the country. In the face
of constant social messages that needing help in everyday
living or being incontinent robs one of dignity and autonomy,
makes one a burden and justifies State-sponsored suicide, maybe
Oregon's elders have taken this disgusting and prejudicial
message to heart. What looks to some like a choice to die
begins to look more like a duty to die to many disability
activists.
There is also the problem of doctors as gatekeepers. This
week, I received a phone call from a woman with three children.
Her ex-husband, age 35, had been in a car wreck April 2nd. She
said that he had been on a ventilator until 2 weeks ago. She
described ways in which he seemed to be slowly improving in
responsiveness, but from the beginning the doctors had urged
the man's mother to withhold treatment. Last week, they finally
persuaded her to remove his food and fluids, and he died
Sunday. I am getting too many calls like this from people being
pressured to withhold treatment.
Another key issue is the problem of State guardians who
have an inherent conflict of interest due to the State's role
in Medicaid. Now, increasingly another type of third-party
medical decision threatens older and disabled people--decisions
by physicians in open opposition to the patient, their
surrogate or their advance directive; i.e., futility.
A Muslim family from Naperville, Illinois, visited my
office recently with detailed records of how family members
were pressured to sign a ``do not resuscitate'' order for their
mother. They complained that the ethics committee had no one
from their own religion. When they finally refused the DNR, the
doctor denied resuscitation anyway and the mother died.
Basically, the bioethicists have warped so-called end-of-
life care into life-ending non-care. They have had hundreds of
millions of dollars to work with and they have used it to build
a guardianship and futile care steamroller that is decimating
the civil and constitutional rights of people whose lives are
viewed as too marginal or costly to merit support. That is the
system in which people are talking about introducing assisted
suicide.
While disagreeing with mainstream bioethics, the
conservatives have their own way of rationing health care.
Instead of rationing based on the person's health status, they
ration based on economic status. For those who depend on
publicly funded health care, Federal and State budget cuts pose
a very large threat. I can't help but note that the power for
much of the end-of-life movement has come from the fact that
Medicare, including the new Part D, does not cover the primary
pain relieving medications, continuing a pattern of extortion--
Chairman Brownback. Ms. Coleman, in all fairness, I need to
have you also wrap up, if you could.
Ms. Coleman. OK. Regardless of our abilities or
disabilities, none of us should feel that we have to die to
have dignity or that we have to die to be relieved of pain or
that we should die to stop burdening our families or society.
Reject the script you have been given by the right to die and
the right to life movements. Instead, listen to the disability
rights movement. We offer a very different vision, as well as
the practical know-how and leadership to build a society and a
health care system that respects and welcomes everyone.
[The prepared statement of Ms. Coleman appears as a
submission for the record.]
Chairman Brownback. Thank you very much. I want to thank
the whole panel. It was a thoughtful set of comments, and a
good chiding, too, from Ms. Coleman, and good and appropriate.
Let me pick up on, Ms. Coleman, your comments, and I want
to ask just a couple of questions, given where the time is on
it, because I agree with what you are saying about the messages
that society sends out. I think those are important. I think
the messages that the law sends out are important, as well, and
I am concerned about what those do.
I believe that we should message that all life at all
stages at all times in all places, no matter who it is, is
beautiful and sacred life; that that should be the message
coming out. I grow concerned when laws come forward like these
that seem to send another message out in the system. OK, it may
be true, it may not be true, but I think from what I hear you
saying people receive the message as that there is more
pressure to die.
Am I correct in hearing what you are saying, and then do
you see statistics that then back that up? You cite some in
Oregon. Do you see that in other places?
Ms. Coleman. There is very little data. In fact, it seems
to me that there has not been much research about people
requesting to die and what happens as they evolve through their
own process of being terminally ill or the processes that
people go through in acquiring disabilities. Frankly, we would
like to see a lot more research about this end-of-life area
than has been conducted. Right now, the causes of death are
hidden. The things that doctors say to people are not analyzed
in terms of their impact on the decisions people make.
Chairman Brownback. You don't think we know very much about
why people in a disability situation die and what is happening
surrounding them?
Ms. Coleman. Or in a terminal illness situation. I mean,
most people who are terminal go through phases of disability
before they get there and that is a source of great concern to
us because we see people trying to say, well, there is some
fundamental difference between the terminally ill and the
disabled, and that is not the case at all. Terminally ill
people are a subset of people with disabilities.
The issues that they are raising about the concerns they
face are the same as disability issues, that sense of being a
burden on family if there is not enough home and community-
based services or other services to make it practical. And that
burden feeling is a source of great concern. We are all in
favor of the implementation of the U.S. Supreme Court decision
in Olmstead which would give consumers a choice in long-term
care, and that is not happening yet in most States. Those
choices are not there and many people are forced into
institutions where they pretty much say, well, I would rather
die than go to a nursing home. That could be considered
understandable, but we are really trying to push for much
better options that give people the kind of support they need
and are not forcing them into situations where they feel like a
burden on family.
Chairman Brownback. Let me ask Mr. Smith, if I could, I ran
across statistics and held a hearing on it a year ago--Senator
Kennedy and I have a bill addressing it--on the percent of
children diagnosed with Down's syndrome in utero that are
aborted. We are at nearly 90 percent now of children in the
United States diagnosed in utero with Down's syndrome that are
then aborted.
Senator Kennedy and I have a bill. We are obviously on
different sides in the abortion issue, but both of us feel like
that number is just way too high. And it is very troubling that
you would get somebody that has Down's syndrome--if they get
here, feet on the ground, they are protected and we try to work
with the situation with the Americans With Disabilities Act.
But if you are in the womb, you are disproportionately killed.
It is one of those things that you look at and you say, OK, is
that an unintended consequence of saying, OK, this is the right
to choose, this is where we are?
I don't like it, I don't agree with it, period, that this
is taking place, and yet it almost seems to be a product of,
OK, we have got a right to choice in 1973, in Roe. Then the
science further develops and we can determine the information
better. We are going to be able to do soon over a hundred tests
in utero for what the child looks like, or features.
These sorts of unintended consequences when you start down
a path--it seems like to me we have seen one there and you have
got a similar path you could argue we may well be looking at in
this feature; that we don't know in 20, 30 years where we end
up if you open this door and what technology will drive you to
at that point in time.
Have you seen papers? Are there people who have written on
this topic that you look at and you say, OK, this is a
reasonable place we would be in 30 years if we opened this
door, or given the technology trends that we have, given the
change of law that this would be?
Mr. Smith. Yes, I have, actually. It strikes me that what
you are describing is a return of eugenics thinking, and that
is a subset of a belief that human life does not have intrinsic
value simply and merely because it is human. I remember once
giving a speech to a medical school in which I proposed that we
have to look, especially medical professionals, at each human
being as having equal human dignity. That is the fundamental
basis of universal human rights.
I had a bright young medical student come up to me
afterwards and he said, you know, I am involved in genetic
counseling. What am I supposed to tell people when a woman
presents having tested to have a baby who is Down's? And I
said, well, why don't you bring in a Down's family and let the
family and the Down's human being present their own story
instead of seeming to push in a certain direction?
I think the spread of the idea that there are some lives
not worth living is already happening in Belgium, which has
only legalized assisted suicide and euthanasia for a couple of
years. The very first person who was killed by euthanasia
violated the Belgian guidelines. It was a patient with multiple
sclerosis, and nothing, of course, was done about it.
In Flanders, they have done studies where infanticide is
raising to the levels already of Dutch proportions. In the
Netherlands, the day the--in fact, I have it with me--the day
the Dutch formally legalized euthanasia--the very next day, the
Dutch Minister of Health said we have to have suicide pills for
elderly people who are tired of life, because this creates a
mind set that begins to see death as an acceptable answer to
human suffering.
In Oregon, it has not been problem-free. In fact, I think
it would be a tremendous benefit to the country if the Congress
at some point did a detailed investigation. And because of
time, I will only talk about one issue. It is the issue of what
I call doctor-shopping. Let's assume I am a patient who wants
assisted suicide and I go to my doctor and I request the lethal
prescription and my doctor says no. My doctor says, you know
what, I am not sure you are going to die within six months, or,
you know what, I think there are things we can do that would
help you not want to kill yourself.
I then just go off and go to an assisted suicide advocacy
organization and they refer me to a doctor, often Dr.
Rasmussen, who facilitates a lot of these assisted suicides.
And if I meet the criteria for the law, I will get the lethal
prescription. In my view, that is Kevorkianism. That is not as
it is sold that it is going to be just an intimate decision
with a long-time family doctor who knows your values, and so
forth. It is not necessarily happening that way.
In the first couple of years of the statistics that were
published, you saw that some patients died from assisted
suicide after only knowing the prescribing doctor for 2 weeks
or less. And the responsive organ to the people such as myself
who raised a concern about that was to keep tracking that
statistic. They just stopped tracking it.
So there is a lot going on in Oregon that I think could use
a real thorough exploration rather than the facile kinds of
statistics we get based mainly on information provided by the
lethally prescribing doctors who are about as much as likely to
tell the State they violated the laws as they are to tell the
IRS they cheated on their taxes.
Chairman Brownback. I want to get, if I could, Professor
Tucker, a question to you on this point. You are very
accomplished and you have worked on this area a lot in the
legal field, but I want to take you, if I can, to another area.
You may feel like you are just not competent to address it
because it is a numbers and it is the trend lines; it is not
the legal issue.
In 1973, we had--this is according to CDC numbers--just
over 615,000 abortions in the United States. In 1990, we were
at 1.4 million, more than double. Then several years ago,
President Clinton, when he vetoed the partial birth abortion
ban, was saying we want abortions in the United States to be
safe, legal and rare. And a lot of people were saying, OK, I
like that idea; I want it to be safe, I want it to be legal, I
want it to be rare. I don't think you can argue it is rare. We
may be able to argue the other points.
But I take you to the debate you are in right now on this
particular issue, and you may not want to answer this because
it is where does the trend line take us to. And I think you
would want assisted suicide to be safe, legal and rare.
Ms. Tucker. Indeed.
Chairman Brownback. But the trend lines of these sorts of
things don't appear to go that way once you open these issues
up on the projections of it. I mean, the trend line seems to be
it opens in one area and then it really expands substantially
to where you could have it as safe and legal, but certainly not
in the rare category, and it expands into a whole series of
fields.
I am sure you have thought about that and I would
appreciate your thought on that subject.
Ms. Tucker. I think that in Oregon it is, in fact, quite
rare. The deaths in Oregon have not exceeded 30 per year. It
started out with fewer per year. Ms. Jackson has, I am sure,
the details in the forefront of her mind, but it stayed very
rare.
An interesting aspect in Oregon, however, is that more
patients every year start the process, go through the process,
obtain the medications, than go on to take them. And patients
are comforted by knowing that they have this option, and few of
them actually go on to take the medications.
And I should say I hear a lot of concern about are we
starting down a dangerous road. Oregon's law is only about
patient self-administration of medication. So these stories
that we have heard about the Netherlands where physicians are
euthanizing patients are not at all on the table in Oregon or
any other State here. The support in the United States among
the American people is for patient self-administration.
The Netherlands has always permitted euthanasia--different
culture, different choice. In this culture, the public support
is for patient self-administration. So that is where the line
is drawn. It has been rarely used in Oregon, with safeguards
that hold that line very well indeed.
Chairman Brownback. And you don't buy this messaging that
we are doing to people and that this has an impact on them, or
that once you start down these roads, the likelihood of
substantial expansion that we have seen in other countries that
have gone--you just don't think that applies here?
Ms. Tucker. No, because no one races to make this decision.
As you heard from Julie McMurchie's story, her mother, upon
receiving the diagnosis of cancer, went through extensive
curative therapy. There is surgery, there is radiation, there
is chemotherapy, there is palliative care. Patients who receive
these diagnoses want to access as much curative and palliative
care as possible. They pursue that aggressively.
But for some, they come to a point where the illness has
ravaged their bodies so tremendously and they have so lost
their ability to bear this cumulative burden that they choose
to have a peaceful, comfortable death. It is not a question
about life versus death. It is a question about a horrific
death that is prolonged beyond endurance and a death that is
peaceful and on their own terms. And those people love life.
Those are culture of life people. They love their life and they
want that life to come to a peaceful closure.
Chairman Brownback. Well, it is a very good, well-spoken,
well-thought panel. I appreciate it, and I am sure it won't be
the last time that the topic is visited.
We will keep the record open for the requisite number of
days. We will accept Senator Feingold's statement into the
record, if he cares to submit one. I know he would have liked
to have been here, but he is carrying an amendment on the
floor.
I do hope the panelists here and maybe those who watched
will think about these topics. I do think it is important that
we consider, when you enter, where it is that you exit on these
massive policy issues. You know the lawyer's statement of good
facts make bad law. You can look at a situation and say that is
just--I mean, factually you look at it and you say this is
terrible.
But then once you consider entering into it and you expand
into it, which is the logical way that these things happen--
that has been the history of our country and of mankind that I
have seen--they have consequences as you move on down. I hope
people can consider that and I hope we will get some good
written statements.
I particularly want to thank Ms. Coleman. I thought you had
really an interesting and a good thought, and it was a good
reminder of some of the things we need to look at.
The hearing is adjourned.
[Whereupon, at 2:49 p.m., the Subcommittee was adjourned.]
[Questions and answers and submissions for the record
follow.]
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