[Congressional Record (Bound Edition), Volume 151 (2005), Part 4]
[Senate]
[Pages 5508-5511]
[From the U.S. Government Publishing Office, www.gpo.gov]




                            END-OF-LIFE CARE

  Mr. WYDEN. Mr. President, late last week, the Nation witnessed the 
end to a saga that was heartrending not only for the medical 
circumstances of the young woman at its center, but for the tragic 
controversy that surrounded it.
  The Congress has spoken once about Terri Schiavo, and in the near 
future the Senate's Committee on Health, Education, Labor, and Pensions 
is expected to hold hearings about one of the issues Ms. Schiavo's 
situation brought to the spotlight: the rights of the incapacitated and 
our society's responsibility toward that community. I hope the Congress 
will now begin a thoughtful examination of this and issues relating to 
end-of-life care. For that reason, I rise today to urge and encourage 
caution as the Senate moves forward.

[[Page 5509]]

  George Washington called the Senate the saucer to cool the 
legislation. I would say the Senate, in fact, must cool its own 
passions before proceeding. The alternative is unacceptable. The Senate 
must not revisit the dangerous zero-sum game of 2 weeks ago, creating a 
false debate between those who seek protection and those who desire 
choices and actually sacrificing one of those rights to secure the 
other. This body's responsibility is to find solutions that preserve 
both. Protecting the vulnerable and preserving end-of-life choices are 
not mutually exclusive. Advocates for the disabled are right when they 
say that losing physical or mental capacity must not deprive anyone of 
their rights even if they have not had or taken the opportunity to make 
their treatment and wishes known.
  There is legitimate cause for worry that the majority of our 
population might give short shrift to the real rights of a minority 
group. Journalist James Taranto summed it up well when he said:

       It was natural for an able-bodied person to think: I 
     wouldn't want to live like [Terri Schiavo]. But someone who 
     is disabled and abjectly dependent on others was more apt to 
     be chilled by the talk of her ``poor quality of life'' and to 
     think: I wouldn't want to be killed like that.

  Let us reject any legislative effort that springs from these false 
choices diminishing the rights of the incapacitated and all Americans. 
New Federal efforts may have the goal of protecting rights, but they 
may have the real effect of engineering outcomes with little regard to 
a patient's true interests. Instead of courting this risk, the Senate 
should seek to empower the disabled and all Americans.
  My sense is that momentum still exists in this body to act unwisely 
in a way that will produce more government and fewer choices for all 
Americans at the end of life, so let me be clear. I intend to oppose 
any congressional fiat that disempowers our citizens--disabled, abled, 
incapacitated, or otherwise. I will oppose any such dictate that 
restricts the choices for our citizens at the end of life and grows the 
role of government instead.
  In the last 2 weeks, Americans have overwhelmingly cautioned the 
Congress against government mandates for the end of life. Many voices 
are speaking. Some have been shouting. If the Senate can't yet 
distinguish the country's clearly stated desire, then this body ought 
to fall silent and listen harder before acting.
  In many ways, this is the central question of our time: whether the 
Federal Government will seek to expand its reach when the citizens wish 
for more individual empowerment. Presented with that question 2 weeks 
ago, the Senate got it wrong. The American people have made it clear 
that moving forward, there ought to be a course correction. True 
leaders will approach these choices dispassionately with a set of 
impartial principles.
  I will spend a few minutes discussing what I think those principles 
ought to be. First, the Senate should help empower Americans to make 
their own choices about the end of life, whatever those choices should 
be. Policy ought to be grounded on the principle that Americans setting 
their dining room tables, in their kitchens, discussing their wishes 
and their fears with their loved ones, and asking in the end that 
government should make sure their desires are carried out. The choices 
they have to discuss--discuss in their homes and in their workplaces--
ought to be expanded, not weakened, by Government and bureaucracy. Our 
policies should help their wishes to be honored by their families and 
their health care system--their lives sustained as they wish or 
unwanted treatment ended as they wish.
  Second, as the Senate looks at the end of life, the Senate needs to 
look at the entire picture. End-of-life care is more than respirators 
and feeding tubes and even more than living wills. The Senate has to 
get beyond today's hot-button questions. The Senate ought to look at 
the fundamentals: conquering pain, expanding hospice care, capping the 
great potential of comfort care, which is known as palliative care. 
Supporting new ways to treat a very ill patient physically, 
spiritually, and emotionally, long before the last days of life, is a 
good use of the Senate's time.
  Third, the Senate must address end-of-life issues with respect for 
constitutional boundaries that have been dangerously dismissed to date. 
For the last 2 weeks, issues of separation of powers and federalism 
have received virtually no attention. The Senate needs to reflect on 
the roots and the reason of federalism, which has given the States 
control over medical practice for more than 200 years. There is a line 
the Senate must not cross again. Beyond that line are the 
constitutional rights of States and, ultimately, the rights of our 
citizens.
  Those individual rights, or citizens rights, ought to be the Senate's 
first guideline in moving forward. I realize the temptation is to frame 
the debate entirely in terms of the heartbreaking situation of Ms. 
Schiavo. I believe it would be a mistake, however, to base Federal law 
on the basis of the tragic chaos that transpired in that woman's 
family. The Senate cannot jump in now and play medical czar to 
predetermine the outcome of every similar case. Our responsibility is 
to help individuals and their families to avoid the compounded tragedy 
that occurred in that family.
  Helping Americans make their wishes clear is paramount. There are a 
variety of ways this can be done. The 50 States and the District of 
Columbia have made provisions for the declaration of individual 
choices, often through the creation of an advanced directive or a 
living will. If the Congress acts, it certainly should not thwart State 
laws in this area. Our goals should be to increase awareness and access 
and to look for ways to aid the enforcement of those wishes of families 
and the health care system.
  Certainly, living wills should be encouraged, and thousands of 
Americans now are looking to fill these forms out. But in many 
instances, frequently that living will, a piece of paper, is not 
enough. Too often people will still be confused about an individual's 
real desires. Too often the language will not be clear or subject to 
misinterpretation. The bioethicist Carl Schneider of the University of 
Michigan said he is ``appalled'' at the number of people who are 
advising the public that a living will alone will be sufficient. He 
states:

       Living wills often do not work.

  So the national discussion about end-of-life choices should include 
information that will ensure that wishes be carried out, not just 
stated. As national leaders, those of us in the Senate can promote this 
discussion.
  Most folks looking into advanced directives today seem to think they 
can just avoid a controversy through a living will. Maryland Attorney 
General Joe Curran recently said that 27,000 people in his State alone 
downloaded the forms over a period of 7 days. That is compared with 600 
downloads during just 1 week in January. But, as I have indicated 
today--and I know it will be surprising to many Americans--the reality 
is the laws vary with respect to living wills and advanced directives, 
and often they do not ensure enforcement of a patient's wishes. 
Therefore, Americans need to know about vital mechanisms in addition to 
the living will. For example, the health care proxy, which designates 
one person if a person becomes incapacitated, is another approach that 
may be a value to our citizens because it leaves no doubt as to who 
speaks for those who cannot speak for themselves.
  There are other options that can help ensure the effectiveness of an 
advanced directive. My home State uses a document called a ``POLST,'' 
which stands for ``Physician Orders for Life-Sustaining Treatment,'' a 
bright-pink document that physicians place in patients' charts to help 
nurses and hospice workers and other providers follow the wishes of the 
patients for end-of-life care. Studies show these physician orders, the 
product of a frank discussion between patients, families, and 
providers, result very often in the kind of end-of-life care that 
patients desire.
  There are various approaches being tested in other States as well, 
and the Senate should promote them. One of

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our most valuable guidelines in moving forward should be the 1990 
Patient Self-Determination Act. Its spirit and letter ought to be 
honored for two reasons. First, the law was passed by the Congress to 
encourage and ease the use of States' advanced directives. It requires 
many Medicare and Medicaid providers to discuss advanced directives and 
how they will be carried out. Its requirements in that respect are as 
correct today as they were 15 years ago.
  The second requirement of the 1990 Patient Self-Determination Act is 
just as important. It prohibits discrimination against those who do not 
have an advanced directive. Now, it is estimated that as many as 75 
percent of Americans do not have an advanced directive to guide their 
end-of-life choices. Under the Patient Self-Determination Act, 
mandating different and discriminatory treatment for Medicare and 
Medicaid patients without advanced directives is specifically ruled 
out. That is the kind of protection I believe all Americans deserve: 
protection that ensures the preservation of all their choices.
  Now, I am grateful that Senator Harkin and others are tackling vital 
issues, important issues that often go ignored, such as the concerns of 
those who are disabled. Americans should expect the Senate, however, to 
do even more.
  In this Congress, I will advocate vigorously for three pieces of 
legislation that take an appropriate Federal approach to key end-of-
life issues. If the Senate has a commitment to consider the end of life 
seriously, I would expect those bills to come to a vote. They all 
involve issues I have been working on since the early 1970s when I was 
codirector of the Oregon Gray Panthers and taught gerontology at 
several Oregon universities. I have been working to improve care for 
older people and the dying throughout my service in the Congress and as 
a member of the Aging Committee in both the House and the Senate.
  For more than a decade, the people of my home State of Oregon have 
had a passionate and thoughtful debate on end-of-life issues. Through 
all of this, I have found that our health care system often neglects 
how people die and how important it is to make dying patients and their 
families more comfortable.
  Almost half of the dying experience moderate to severe pain in the 
last days of their lives. It does not have to be that way. The 
distinguished Presiding Officer is one of our authorities on medical 
technology, and he knows medical technology and know-how exist today to 
reduce the suffering that I am describing. What does not exist is a 
medical system that supports clinicians trying to address these issues 
or a system to support patients and families as they try to find help 
for pain.
  I intend to reintroduce the Conquering Pain Act, a bipartisan bill I 
have written that recognizes that too often at the end of life pain 
goes untreated for the dying patient. The Conquering Pain Act does not 
tell providers how to practice medicine. It certainly does not override 
the States' constitutional right to oversee medical practice. But it 
does serve to ensure that patients in every corner of our country, 24/
7, 7 days a week, can get access to help as they try to deal with pain.
  This legislation creates six regional Family Support Networks to 
assist physicians and families of patients in pain, and it ensures that 
in every single community in this country Americans know where to turn 
to get information and help when loved ones are suffering. Americans 
deserve to know their health care providers and their families will 
have resources to ease suffering. I believe the ability to see a loved 
one's pain properly treated can help families across this country. It 
certainly will add dignity and preserve choices at the end of life.
  My second effort will focus on the vital work of hospice programs. 
More Americans are familiar with hospice today through Ms. Schiavo's 
case, but its true purpose may still be somewhat unclear. Hospice 
programs provide a range of services to control pain and other 
symptoms, maintain dignity, and provide comfort care, primarily to 
individuals in their own homes.
  But the hospice benefit under Medicare needs to be improved. Today, 
about 20 percent of patients who die in the United States receive 
hospice care, and of that low number few begin their care early enough 
to receive the full benefit of hospice. Medicare requires patients and 
doctors to stop all treatment that might bring a cure before they can 
begin hospice treatment. I do not believe--I do not think Senators will 
believe--that patients should be required to abandon all hope of 
recovery to get the good hospice care they need, but that is what the 
Medicare law states today. It makes no sense, and it ought to be 
changed.
  My Medicare Hospice Demonstration Act permits patients to seek 
hospice care as they seek a cure. It will not require patients and 
their families to abandon hope even as they move towards acceptance. 
For many, it will result in better care, more control, and more 
peaceful passage through the end of life.
  Finally, the Senate ought to promote training in what is called 
comfort care or palliative care in our medical schools. This is a 
practice that is important for the Senate to understand. Comfort care, 
palliative care, helps terminally ill patients live as actively as 
possible and helps their families cope. It neither hastens nor 
postpones death. It is offered in hospice programs, in the home, and in 
other settings. It prevents and relieves suffering by identifying, 
assessing, and treating pain and other problems. Those can include 
physical problems, emotional problems, and even spiritual concerns. 
Palliative care is appropriate even before hospice care. It is even 
compatible with aggressive efforts to prolong life, such as 
chemotherapy or radiation therapy.
  The Palliative Care Training Act will ensure that our country has 
more trained professionals to offer these critical comfort care 
services. The legislation addresses a need that the Senate has ignored 
too long. Without it, our citizens will not have enough dedicated 
professionals to meet this enormous need.
  As the distinguished Presiding Officer and I have discussed often, we 
are in the middle of a demographic revolution. We will have many more 
older people. It will not be uncommon for individuals to live beyond 
100, and with Americans living so much longer than they did a century 
ago, it is important they have options that work for them. And demand 
for comfort, for palliative care, is certainly going to grow.
  With all the American health care system has to offer, there has to 
be better care for patients and their families at the end of life. I 
hope these three bills I have described will get careful and thoughtful 
examination in the days ahead and in the hearings that apparently will 
begin later this the week in the committee on which the distinguished 
Presiding Officer serves.
  As I have indicated, I believe the Senate has not been appropriately 
careful in recent weeks. When this body first considered legislation 
regarding Ms. Schiavo, I made my objections known. I was compelled to 
block the initial version of the legislation, a bill that was put 
forward without hearings, without discussion, and one that threatened 
to turn the Congress into a convention of case-by-case medical czars. 
In my view, that legislation intruded dangerously on States' rights to 
determine medical practice.
  I worked with colleagues so Congress could pass bipartisan 
legislation that in my view didn't set that dangerous precedent, 
particularly as it related to my own State's law that the people of 
Oregon have now approved twice. I didn't filibuster that final bill, 
which I had concerns about, but my concerns remain. I do not wish to 
see the steps of the Capitol as the new gathering place for Americans 
to bring their difficult family disputes at the end of life. I 
certainly do not want to see our Constitution trampled. Unfortunately, 
Congress has now opened the door to both those possibilities.
  The Senate has a renewed responsibility to do better. Each State's 
constitutional right to determine medical practice exists whether the 
Congress agrees or disagrees--to put it bluntly, whether Congress likes 
it or not. Congress cannot only respect the principle

[[Page 5511]]

of States rights when it thinks the State is right. In the same way, 
the checks and balances the Founding Fathers set among the executive, 
legislative, and judicial branches, those powers are not up for 
negotiation because they produce an outcome that is unacceptable to 
some Americans. Before acting, the Senate ought to consider the very 
nature of federalism that has brought and held our States together for 
more than two centuries. Then the Congress should think carefully about 
whether it makes sense to tear down a basic pillar of our national 
contract.
  This body writes Federal laws. If the Senate does not like the effect 
of a Federal law, our prerogative is to change it. But it is not the 
Senate's prerogative to play constitutional chicken when matters happen 
outside of our jurisdiction. That is true no matter how strong our 
personal passions may be.
  I have fought for the rights of my State and its voters to decide the 
issue of physician-assisted suicide at home in Oregon. As I make this 
point, I want to point out that I voted twice against this law as an 
individual citizen. On two occasions, I cast my personal ballot against 
legalizing assisted suicide in my State. In addition, I voted against 
Federal funding of assisted suicide as a Member of this body. But the 
people of my State have spoken on an issue they have a right to decide 
at home in Oregon. As I have said in this body, I intend to defend 
their right to make that decision in every way I can.
  In the case of Ms. Schiavo, I believe that Floridians, through their 
representatives in the State legislature, deserve the same leeway to 
decide such medical matters for themselves. When Congress ignored the 
fact that Florida's legislature was still working on the case and 
ignored the right of the State courts to rule, it sought to weaken 
Florida's rights, Oregon's rights, and the rights of every State in our 
Nation. Any legislation this body passes now should not pose the same 
constitutional threat. The legislation I have outlined today will not, 
and I will oppose any legislation that does so again.
  It is an imperfect process even for States to rule on medical 
matters. End-of-life issues are about the heart and the head, about our 
personal morals as well as the law. Letting States decide is the rule 
of the Constitution I have sworn to uphold, and I intend to stand up 
for that principle. It is a critically important principle that the 
Senate stand for. And it is a principle that ought to dictate our 
actions before any legislation comes to a vote on the floor. In 
hearings this week--and in any part of the legislative process--there 
are responsibilities to fulfill before the Senate acts or there is a 
risk of gravely irresponsible legislation.
  The Senate should ask: Does any legislation on end of life meet key 
tests? Does it clarify and expand and ensure the choices that 
individuals and families can make? Does it aid in the honoring of those 
wishes once expressed, whether those wishes are to have life sustained 
or unwanted treatments withheld? Does it protect the rights of those in 
the disability community and those who are incapacitated, particularly 
when they have not had the opportunity to make their wishes known? Does 
it speak to more than the political debates of the moment and truly 
take in hand the basic issues at the end of life? Does it contribute to 
less pain, better care, and more peace for those at the end of life? 
Does it fully meet the responsibility of the Senate without usurping 
the constitutional role of the States and the judiciary? And finally, 
does it meet the obligations of the Senate to the American people 
without extending our reach into their personal lives?
  The Senate has an obligation to learn from the events of the last 2 
weeks. Before acting, let us think. The Senate has been called the 
world's greatest deliberative body. Let us now be more deliberative as 
we dare to approach issues that are more intimate and more personal 
than any others we could discuss.
  The truth is, Americans' end-of-life choices should not be made by 
strangers in the Congress, pushed by the passion of one case or the 
political priorities that press on every side. Americans are going to 
continue to wrestle with end-of-life care for themselves and their 
loved ones for as long as breath is drawn on this soil. Americans will 
bring all they have to bear ethically, morally, and spiritually to make 
the best decisions for themselves and to honor the decisions of their 
loved ones. The Senate must equal their effort and do its duty with 
honor for those at the end of life.
  I yield the floor.
  The ACTING PRESIDENT pro tempore. The Senator from Florida.
  Mr. NELSON of Florida. Mr. President, what is the parliamentary 
procedure we are in at the moment?
  The ACTING PRESIDENT pro tempore. The Senator from Florida should 
know that we are in morning business and there is a 10-minute limit on 
the Senator's remarks.

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