[Senate Hearing 109-1028]
[From the U.S. Government Publishing Office]


                                                       S. Hrg. 109-1028
 
     THE CONSEQUENCES OF LEGALIZED ASSISTED SUICIDE AND EUTHANASIA

=======================================================================


                                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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                       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
                                 ------                                

   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

                              ----------                              

                    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

                              ----------                              


                         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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