[Senate Hearing 110-841]
[From the U.S. Government Publishing Office]


                                                        S. Hrg. 110-841
 
HONORING FINAL WISHES: HOW TO RESPECT AMERICAN'S CHOICES AT THE END OF 
                                  LIFE

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



                                HEARING

                               before the

                       SPECIAL COMMITTEE ON AGING
                          UNITED STATES SENATE

                       ONE HUNDRED TENTH CONGRESS

                             SECOND SESSION

                               __________

                             WASHINGTON, DC

                               __________

                           SEPTEMBER 24, 2008

                               __________

                           Serial No. 110-37

         Printed for the use of the Special Committee on Aging



  Available via the World Wide Web: http://www.gpoaccess.gov/congress/
                               index.html



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                       SPECIAL COMMITTEE ON AGING

                     HERB KOHL, Wisconsin, Chairman
RON WYDEN, Oregon                    GORDON H. SMITH, Oregon
BLANCHE L. LINCOLN, Arkansas         RICHARD SHELBY, Alabama
EVAN BAYH, Indiana                   SUSAN COLLINS, Maine
THOMAS R. CARPER, Delaware           MEL MARTINEZ, Florida
BILL NELSON, Florida                 LARRY E. CRAIG, Idaho
HILLARY RODHAM CLINTON, New York     ELIZABETH DOLE, North Carolina
KEN SALAZAR, Colorado                NORM COLEMAN, Minnesota
ROBERT P. CASEY, Jr., Pennsylvania   DAVID VITTER, Louisiana
CLAIRE McCASKILL, Missouri           BOB CORKER, Tennessee
SHELDON WHITEHOUSE, Rhode Island     ARLEN SPECTER, Pennsylvania
                 Debra Whitman, Majority Staff Director
            Catherine Finley, Ranking Member Staff Director

                                  (ii)




                            C O N T E N T S

                              ----------                              
                                                                   Page
Opening Statement of Senator Herb Kohl...........................     1
Opening Statement of Senator Sheldon Whitehouse..................     2
Opening Statement of Senator Ron Wyden...........................     4
Opening Statement of Senator Ken Salazar.........................     6
Opening Statement of Senator Susan Collins.......................   104

                                Panel I

Statement of Joan Curran, Executive Director--External Affairs, 
  Gundersen Lutheran Medical Center, LaCrosse, WI................     7
Statement of Joseph O'Connor, Chair, Commission on Law and Aging, 
  American Bar Association, Bloomington, IN......................    11
Statement of Dr. Diane E. Meier, Gaisman Professor of Medical 
  Ethics, Department of Geriatrics, Mount Sinai School of 
  Medicine, New York, NY.........................................    39
Statement of Dr. Joan Teno, Professor of Community Health and 
  Medicine, Warren Alpert School of Medicine, Brown University, 
  Providence, RI.................................................    65
Statement of W.A. Drew Edmondson, Oklahoma Attorney General, 
  Oklahoma City, OK..............................................    76
Statement of Dr. Patricia Bomba, Vice President and Medical 
  Director, Geriatrics, Excellus BlueCross BlueShield, Rochester, 
  NY.............................................................    82

                                APPENDIX

Prepared Statement of Senator Robert P. Casey, Jr................   117
Prepared Statement of Senator Ken Salazar........................   117
Additional information from Dr. Patricia Bomba...................   119
Statement of Richard Grimes, President and CEO, Assisted Living 
  Federation of America..........................................   123
Statement and additional information from Barbara Lee, President, 
  Compassion and Choices.........................................   125

                                 (iii)



HONORING FINAL WISHES: HOW TO RESPECT AMERICANS' CHOICES AT THE END OF 
                                  LIFE

                                -----


                     WEDNESDAY, SEPTEMBER 24, 2008

                                        U.S. Senate
                                 Special Committee on Aging
                                                    Washington, DC.
    The committee met, pursuant to notice, at 10:32 a.m. in 
room SD-562, Dirksen Senate Office Building, Hon. Herb Kohl 
(chairman of the committee) presiding.
    Present: Senators Kohl [presiding], Wyden, Salazar, 
Whitehouse, Collins, and Rockefeller.

             OPENING STATEMENT OF SENATOR HERB KOHL

    The Chairman. Good morning to everyone. We will commence 
our hearing at this time. I would like to thank Senator Sheldon 
Whitehouse for holding today's hearing.
    We are very pleased to have Senator Whitehouse as a member 
of this Committee and he is emerging as one of our leaders. 
Senator Whitehouse is tackling a very sensitive but extremely 
crucial issue this morning. We all thank him for that.
    Today we will discuss end of life care, a topic which 
includes how to best treat patients at their most vulnerable 
stage in life. Most importantly we will discuss how to 
encourage advance planning about what kind of care people want 
for themselves at the end of their lives. At a time when 
shifting demographics are about to unleash an unprecedented 
number of older Americans, this Committee often focuses on 
planning for the foreseeable events ahead.
    Through our work we urge our constituents to save for a 
secure retirement, make sure that they will have adequate 
health coverage and also to think about their future long term 
care needs. In terms of foreseeable events, perhaps it's a 
cliche, but the end of one's life is as inevitable as it comes. 
Advanced planning is meant to provide clarification at time 
that can be fraught with pain, confusion and sadness.
    We will learn about how many Americans have acquired 
advanced directives. How likely the instructions are to be 
followed by our nation's health professions. In my own State of 
Wisconsin, we are engaged in promoting advanced directives on 
many levels all over our state.
    For example, Gundersen Lutheran Medical Center in LaCrosse 
has streamlined advanced directives into their electronic 
medical records system. In Milwaukee, businesses have partnered 
to provide advanced planning material to their employees. Both 
of these efforts help to ensure that people get the care that 
they want at the end of their life.
    Unfortunately we will hear from some of today's witnesses 
about the many barriers to advanced planning. I believe we can 
all agree that nothing should get in the way of providing 
comfort and solace to people at the end of their lives. Our 
hope is that this morning we will discover some policy 
solutions to promote the use of advanced directives within our 
nation's medical institutions.
    I would like particularly to thank and welcome our witness 
from Wisconsin today, Joan Curran for being here today to 
testify on end of life care. Once again, I'd like to thank 
Senator Whitehouse for his leadership on this issue. At this 
time I will turn the hearing over to him.
    Senator Whitehouse.

        OPENING STATEMENT OF SENATOR SHELDON WHITEHOUSE

    Senator Whitehouse. Thank you, Chairman. Welcome to all our 
witnesses, many of whom have traveled a great distance to be 
here. I appreciate, very much, that you are here.
    Now I first want to thank the Chairman for his 
encouragement of this hearing and for the wonderful cooperation 
we received from him and his staff in pulling all of this 
together. It has been vital to getting this done. I'm extremely 
grateful to him for his leadership of this Committee and for 
his leadership with respect to this issue.
    I'm also delighted that my colleagues, Senator Wyden and 
Senator Salazar are here as well. I'm proud that they're here. 
I appreciate their attendance.
    I consider the discussion that we're going to have today to 
be a vital one about choice and dignity at the end of life. 
This discussion can be uncomfortable, but anybody who has been 
there through the death of a loved one knows its importance.
    It's a discussion, more than anything else, about free 
will, something we value very highly in this country. Making 
sure that people enjoy the exercise of their free will at the 
time of life where there is perhaps, the greatest premium on 
dignity.
    Individuals at the end of life are vulnerable. Many are 
unable to communicate. Few are in a position to argue with a 
bureaucracy. We owe them the opportunity to make their wishes 
known and some certainty that the wishes made known will indeed 
be respected.
    How much treatment do I want? Where do I want to be? How 
much pain do I wish to endure? These are wishes that should be 
honored.
    It's particularly important to honor those wishes at the 
end of life because the ramifications of failing to do so are 
grim. Too many of us have witnessed a death taken over by 
machines and medicine turning the human being we love into a 
snarl of tubes and wires with humanity and dignity diminished. 
The late American political writer, Stuart Alsop, while he was 
dying, wrote ``a dying man needs to die, as a sleepy man, needs 
to sleep, and there comes a time when it is wrong, as well as 
useless to resist.'' He was speaking from his own experience.
    If someone chooses not to resist death, he or she should 
have the right to make that decision and to have it honored. So 
we face two broad policy questions that I hope this hearing 
will address.
    First, how can we make sure that Americans carefully think 
about and communicate and document how they want to be treated 
at the end of life? Many people fail to complete advance 
directives because they believe they are difficult to execute 
or that they'll just be ignored. Many are reluctant to discuss 
death at all. Many think that completing a form is unnecessary 
because a loved one will make the right decisions for them.
    Currently only between 18 and 30 percent of Americans have 
completed some type of advance directive. Acutely ill 
individuals do a little better, but only 35 percent of dialysis 
patients and 32 percent of COPD patients have advance 
directives. Even among terminally ill patients fewer than 50 
percent have an ``advanced directive'' in their medical record.
    The second policy question I hope this hearing will address 
is how can we help get those documented wishes actually 
translated into a plan of care with the provider? How can we 
make sure, for example that EMS workers don't resuscitate a 
patient against patients' documented wishes? That doctors can 
comfortably provide adequate pain medication to patients in 
need. Or that patients can receive palliative care wherever 
they are.
    Currently roughly 70 percent of physicians whose patients 
have advance directives do not know about them. This is a 
fundamental disconnect. Particularly troubling in light of the 
fact that physicians don't accurately predict their patients' 
preferences all the time, indeed about 65 percent success rate. 
Fortunately we have invited some superb individuals to help us 
wade through these questions from a variety of perspectives.
    I think what we'll do is have all the witnesses testify, 
and then we'll have a question and answer session. I'd ask the 
witnesses to keep their testimony to 5 minutes. I'll give a 
little signal when it's getting there, so that we have more 
time for a more general discussion.
    One witness is Joseph O'Connor, who has been the Chair of 
the American Bar Association's Commission on Law and Aging 
since 2005. The Commission has been involved in end of life 
legal research and implementation of appropriate end of life 
policies for the past 29 years. Mr. O'Connor is a partner in 
the law firm of Bunger and Robertson in Bloomington, IN. He has 
served the Indiana State Bar Association in various capacities 
including as its President.
    Dr. Diane Meier is the Director for the Center to Advance 
Palliative Care, a national organization devoted to increasing 
the number and quality of palliative care programs in the 
United States. She's also Director of the Lilian Benjamin 
Hertzberg Palliative Care Institute and Professor of 
Geriatrics, Internal Medicine and Medical Ethics at the Mount 
Sinai School of Medicine in New York City. She is the principle 
investigator of an NCI funded, 5 year, multi-site study on the 
outcomes of hospital palliative care services in cancer 
patients. Just yesterday, Dr. Meier received a MacArthur 
Foundation Fellowship, the so-called ``genius grant'', which 
she hopes will help her with her children. [Laughter.]
    For her leadership in innovation in promoting high quality 
palliative care. Congratulations, Dr. Meier.
    Dr. Joan Teno, a friend from Rhode Island, is a Professor 
of Community Health and Medicine, an Associate Director of the 
Center for Gerontology and Health Care Research at the Brown 
University Medical School. She's a Health Services Researcher, 
Hospice Medical Director and Board Certified Internist with 
added qualification in geriatrics and palliative medicine. Dr. 
Teno has served on numerous advisory panels including the 
Institute of Medicine, World Health Organization, American Bar 
Association and as grant peer reviewer for the National 
Institutes of Health. She is also an Associate Medical Director 
at Home and Hospice Care of Rhode Island.
    Drew Edmondson serves as the Attorney General of Oklahoma. 
I had the honor of serving as Attorney General of Rhode Island 
while Drew was Attorney General of Oklahoma. He was elected by 
his peers to be the head of the National Association of 
Attorneys General and as the President of that Association made 
high quality, end of life care a priority.
    Thanks to advocacy from his office, the past three Oklahoma 
Governors have all endorsed and participated in a state wide, 
palliative care week aimed at raising awareness about end of 
life decisionmaking. Attorney General Edmondson has also 
convened legal experts, health care providers and community 
leaders to form the Oklahoma Attorney General's Task Force on 
end of life health care, which continues to study this issue 
and advocate for the forums.
    Finally, Dr. Patricia Bomba is the Vice President and 
Medical Director of Geriatrics for Excellus Health Plan 
Incorporated and subsidiaries of the Lifetime Health Care 
companies. In her current role, she serves as a Geriatric 
Consultant on projects and program development affecting 
seniors. She's a nationally recognized palliative care and end 
of life expert who designs and oversees the implementation of 
community projects.
    She's New York State's representative on the National POLST 
Paradigm Task Force, a multi-state collaborative. She served as 
a New York State delegate to the White House Conference on 
Aging, and is a member of the review Committee of the National 
Quality Forums framework and preferred practices for palliative 
and hospice care quality projects.
    So we have a brilliant group of witnesses and before we go 
to them for their statements I would ask my colleagues, Senator 
Wyden of Oregon and Senator Salazar of Colorado if they would 
like to share a few words with us.

             OPENING STATEMENT OF SENATOR RON WYDEN

    Senator Wyden. Thank you, Mr. Chairman. I commend you, 
Chairman Whitehouse for particularly scheduling this session. 
As we go into the national reform debate in the next session of 
Congress, I think it is fair to say that you cannot get that 
topic right unless you expand options for sensible, end of life 
care.
    So I commend you, Chairman Whitehouse and also Chairman 
Kohl for your leadership. You have guided us throughout this 
session into a host of important issues. We've been 
particularly appreciative of the fact that you've allowed 
members of the Committee to chair hearings. Senator Whitehouse 
has been a real addition to the U.S. Senate in the health 
debate, very pleased that you're staking out this question.
    I think it's fair to start this discussion with a little 
bit of history because regrettably on the end of life issue the 
U.S. Senate has had to spend a lot of time in recent years 
blocking ill advised ideas. In particular two areas I have been 
involved in. I went to the floor of the U.S. Senate twice to 
block the original Terry Schiavo legislation.
    I think we all remember the tragedy of that story, a 
severely brain damaged, Florida woman. A measure was, in 
effect, proposed authorizing that that case be removed to the 
Federal courts. It would have set a precedent in effect for the 
U.S. Congress to intervene in family tragedies across the land. 
I objected until the measure was redone to allow Federal court 
intervention just in the Schiavo case. Of course we all 
remember the tragedy of that woman dying shortly afterwards.
    We had much the same thing in the debate about Oregon's 
Death with Dignity law, a law that I didn't even vote for at 
the time. The measure passed in the House of Representatives to 
undermine the Oregon law. There was a sense that the Senate 
would simply go along with the House and throw the Oregon law 
in the trash can. I objected to that too. The Oregon law 
remains on the books.
    So I noted Chairman Whitehouse's fine statement of Dr. 
Meier that you're being recognized for you genius. I hope some 
of that starts to apply in the Congressional examination of end 
of life issues. Because, regrettably in the past there have 
been a fair amount of ill advised proposals.
    What I think the part of what needs to be done in the 
future end of life care, what we try to do in the Healthy 
Americans Act, a bill with 16 sponsors, eight Democrats and 
eight Republicans, is to try to get at the area all Americans 
seem to support and that is creating more options for families 
and our loved ones in terms of end of life. Chairman Whitehouse 
touched on the advanced directives effort. That is something we 
encourage in the Healthy Americans Act.
    We feel very strongly that families ought to have access to 
24/7 assistance in terms of end of life options. It seems so 
often the crisis about end of life care takes place on a Sunday 
night and there is no doctor or nurse available. People have 
nowhere to turn.
    So to have those options is something we've included in the 
Healthy Americans Act. Senator Rockefeller, who serves on the 
Finance Committee with Senator Salazar and I, feels very 
strongly about creating those options. I think, this is 
something the American people feel strongly about as well.
    Finally with respect to hospice care. My goodness, we 
should all agree on expanding more options for hospice care. 
One that I felt strongly about that we put in the Healthy 
Americans Act is right now, the Federal Government basically 
says you've got to give up the prospect of curative care in 
order to get the Hospice benefit, which just seems inhumane and 
contrary to all of what you all as witnesses have been 
advocating for.
    Let's give families as many options as we can. So we make 
clear in the Healthy Americans Act that you do not have to give 
up the prospect of curative care in order to get the Hospice 
benefits. If we can steer clear with your genius, Dr. Meier and 
others, of some of these ill advised approaches that we've had 
in recent years and go to where I think the American people 
want us to go which is a consensus.
    That let's give them more options for them to choose from--
not for government to dictate but options for them to choose 
from. With the leadership of Chairman Whitehouse and good 
sessions like this, we can make good progress in this area. 
Particularly make sure that next year, when we move ahead on 
health reform we finally get end of life care right and create 
the kinds of options that all of you and others are advocating 
for. So, Mr. Chairman, I thank you and particularly for your 
leadership.
    Senator Whitehouse. I thank you, Senator Wyden. As he 
indicated, Senator Wyden's Healthy Americans Act is, probably, 
is the leading bipartisan healthcare bill in the Senate right 
now. It's thanks to energy and diligence and foresight that it 
has gotten as far as it has.
    I'm now pleased to call on Attorney General and now 
Senator, Ken Salazar, part of the merry band of Attorneys 
General who served with Attorney General Edmondson.
    Senator Salazar.

            OPENING STATEMENT OF SENATOR KEN SALAZAR

    Senator Salazar. Thank you very much, Senator Sheldon, 
Whitehouse and Attorney General Edmondson, welcome to the U.S. 
Senate. Someday you may be joining us here and hopefully you'll 
be on the Aging Committee and on the Finance Committee and on 
the Judiciary Committee. There's some wonderful Committees 
here.
    To Chairman Kohl, thank you so much as well for focusing in 
on this issue. We have been involved in the Finance Committee 
over the last year on trying to figure out what we ought to do 
with healthcare reform. I think a lot of us can describe the 
problem, each of us in our own states, each of us doing 
something to try to put a greater level of understanding on the 
issue of healthcare.
    I know Senator Wyden has been the lead proponent of 
bringing together Republicans and Democrats to focus in on the 
issue in a very effective and successful way. Senator 
Whitehouse, himself, has put together a bipartisan group which 
he has met with regularly to try to address the issues of 
healthcare. Senator Kohl, I can tell you that without your 
leadership on this Committee there would be issues that I think 
would be overlooked.
    So, today in particular, as we look at end of life issues 
and the complexity around those end of life issues, it seems to 
me that the inescapable conclusion that I have is that we need 
to make sure that this is part of our dealing with the future 
of healthcare here in America. As Senator Whitehouse stated, it 
is an issue that affects each and every one of us. We've seen 
it happen in our own families and we've seen it happen with 
other people.
    It was under the leadership of Attorney General Edmondson, 
as the President of the National Association of Attorneys 
General that we put together, not only a national summit, but 
summits around the country to try to deal with this issue. I 
think that there is no limitation on the amount of attention 
that we need to bring to this issue, because it's still an 
issue that for whatever reason, isn't put on the radar screen 
of America in the way that it should. Hearing Senator 
Whitehouse talk about statistics with respect to advanced 
directives and the fact that less than a third of the people in 
America actually have advanced directives.
    Then if you analyze the number of doctors who've actually 
read the advanced directives. Know that there's an ``advanced 
directive'' there for a patient than it's really a small 
percentage really of people who are guiding their own destiny. 
In most cases at a time when they can't even have the 
consciousness to do it.
    So this the right issue. It's the right issue for moral 
reasons, for ethical reasons, for legal reasons, for cost 
reasons and a whole host of other issues. So I just appreciate 
the quality of this panel. Again it's an honor for us, Drew, to 
have you here as our comrade in arms as Attorney General for 
Sheldon and for me to be able to have you here as one of the 
witnesses in this hearing. We really, really appreciate it.
    Thank you very much, Mr. Chairman.
    Senator Whitehouse. Thank you, Senator Salazar.
    Senator Salazar. If you're really good Drew Edmondson, you 
do what Sheldon Whitehouse does which is, you know, he hasn't 
been here that long. He's already chairing a Committee. 
[Laughter.]
    Really good.
    Senator Whitehouse. Alert viewers will have noticed that 
one of the witnesses was not introduced when I went through the 
panel. That is because she hails from the home state of The 
Chairman. So our last act before we get to the witnesses is to 
invite Chairman Kohl to introduce Joan Curran of Wisconsin.
    The Chairman. Thank you, Senator Whitehouse. As he said, I 
do have the honor and the distinct pleasure to introduce Joan 
Curran who's from LaCrosse, WI. She has graciously agreed to 
share her story with us today.
    Ms. Curran has both professional and personal experience 
with end of life planning. Currently she is the Chief of 
Government Relations in External Affairs at Gundersen Lutheran 
Medical Center in LaCrosse. Gundersen Lutheran has successfully 
implemented a very good system for end of life planning. Indeed 
has one of the best systems throughout our country. Ms. Curran 
will share her personal experiences today.
    With that, we turn the microphone over to you, Ms. Curran.

STATEMENT OF JOAN CURRAN, EXECUTIVE DIRECTOR--EXTERNAL AFFAIRS, 
        GUNDERSEN LUTHERAN MEDICAL CENTER, LACROSSE, WI

    Ms. Curran. Chairman Kohl, Senator Smith, Senator 
Whitehouse, members of the Special Committee on Aging, thank 
you for giving me the chance to talk with you about advanced 
care planning today. For the past 26 years I've worked for 
Gundersen Lutheran. An integrated health system headquartered 
in LaCrosse, WI with clinics and healthcare services in 
Wisconsin, Minnesota and Iowa.
    For more than 20 years ago the entire LaCrosse community 
committed to an innovative model of the advanced care 
directives. They made sure it went beyond just filling out 
paperwork and legal documents. They made sure that the 
``advanced directive'' was in every person's medical record, 
where and when it was needed. They made sure that medical 
professionals had the training to know how to comply with the 
patients' wishes.
    The system was designed by healthcare professionals and was 
implemented even before there were electronic medical records. 
As I speak to you today it's not only as an employee of the 
Medical Center who has lead the Nation in advanced care 
planning. I'm here today to tell my personal stories in hopes 
that you'll be showing how advanced care planning is more than 
just filling out the paperwork.
    In 1989 my friend Annette experienced headaches so severe 
that she went to the emergency room on a Sunday afternoon. That 
day she was diagnosed with a brain tumor. She was 28 years old.
    Annette went through surgery that week to determine the 
severity of the tumor. She and I were both stunned when the 
neurosurgeon told us that it was a Grade 4 out of Grade 5 
malignancy. Although the surgery was successful, she was given 
6 months to live, perhaps a year if they could slow the growth 
with radiation treatment.
    The radiation started a few weeks later. During the next 
weeks we were both focused on dealing with the treatments, side 
effects and how frightening this was for both of us. The 
hospital chaplain was the first individual to discuss with 
Annette whether she wanted to talk about her treatment in the 
event she could not speak for herself.
    At the time I remember being upset that anyone would want 
to discuss such a sensitive subject at such a fragile and 
emotional time. To my surprise, she was relieved to have the 
topic on the table. With the chaplain and later her physician, 
we went over her decisions.
    Annette asked me to be the person who made sure her 
treatment choices were honored. I wasn't sure I could do it. 
With the help of an attorney in the pastoral care department at 
the hospital, we secured the needed documentation for 
healthcare power of attorney, as well as power of attorney. 
Through those documents we codified what care Annette wanted as 
her illness progressed.
    But more importantly through the discussions that were 
facilitated as we filled out those documents, I became very 
comfortable and fully understood what she wanted and why it was 
important to her. These discussions allowed me and her loved 
ones to cope with what was happening to Annette. We were so 
fortunate that the medical center and staff were supportive of 
her decisions, too. Because of this we were certain everyone 
was on the same page and her treatment plan reflected her 
wishes.
    We also became more knowledgeable about the legal 
implications and limitations of the existing system. For 
example, we found out that emergency care and her acute care 
and hospital care were not coordinated by any uniform standard. 
So we taped a copy of Annette's advanced directives and my 
healthcare power of attorney to her bed and to the door of our 
house in case an emergency happened. That way, even in an 
emergency Annette would receive the care she wanted and she 
would not receive care she didn't want. We both carried paper 
copies with us in the event the unexpected happened.
    Two years after Annette's original diagnosis, she no longer 
had the ability to communicate. Her treatment wishes were well 
established in her care plan and any treatment options 
considered those wishes. I was with her when she died on 
Christmas Day 1991.
    As she had chosen, she received only the care that she 
wanted. It proved to be the greatest gift I could have ever 
given her. That in itself gave me comfort in the months 
following her death.
    Before I came to Washington today, I reviewed Annette's 
``advanced directive'' written nearly 20 years ago. On it was a 
handwritten note from Annette that I had forgotten. It read, 
``I would like Joan to be my healthcare agent because she's 
been a great friend to me for many, many years. We've talked an 
agreed that she would make all my decisions for me.'' This 
``advanced directive,'' then and now, allowed all of us and 
Annette's loved ones to move beyond her death and celebrate her 
life.
    My second experience with end of life planning was a very 
different situation. With Annette, she was young and her 
illness lasted for two and a half years. Several years later my 
84 year old Dad died very suddenly and unexpectedly.
    One afternoon long before dad got sick, Mom and Dad let my 
siblings and I know that they had completed advanced 
directives. Throughout the discussion when one of us would say, 
``Dad, you can't mean that.'' He would let us know that indeed 
that is what he meant. My mother wanted to make sure that 
everyone understood what they wanted so there would be no 
disputes.
    By the end of the conversation, we were clear on who would 
be making the decisions. Each of us had a copy of their wishes. 
What proved to be the most important was that we all understood 
what those written words meant.
    On December 18, 2004, my Dad was taken to the emergency 
room. Dad was diagnosed with bleeding in his brain and was 
transferred from the local emergency room in Minnesota to 
nearby Gundersen Lutheran Medical Center in Wisconsin. His 
``advanced directive'' went with him.
    Unlike my experience in 1989, by 2004 Gundersen had 
incorporated advanced care planning into their electronic 
medical record system which made it easy for information to be 
available to any medical professional treating my Dad. That 
Saturday, Dad was making good progress and he was anxious to go 
home. Our physician wanted to keep him one more night.
    Fifteen minutes after I left the hospital, I got a call 
that Dad was in trouble. As my Dad was being wheeled down the 
hallway to undergo a CT scan the last words to my sister, from 
him, were, ``No more.'' The doctor explained to us that Dad 
would no longer be able to talk, to walk or to feed himself. 
Within a short period of time he would need life support to 
help him breathe.
    The doctor gave us some treatment options, but it was clear 
that Dad would never regain functionality. I remember asking my 
Mom if she understood what the doctor had said and if she 
needed him to repeat anything or if she had any questions. She 
confidently nodded her head and said to him, ``Thank you, 
doctor, your work is done here. He's in God's hands now.'' It 
was just after midnight.
    As a family we're all comfortable with the way my Dad chose 
to die. We've never had to wonder whether it was the right 
thing to not seek additional treatment or if we made the right 
decisions. Since then we've been able to spend time helping our 
Mom, enjoying what time we have left with her.
    I urge this Committee to give the rest of the country what 
patients in LaCrosse, WI have had access to for many years, a 
system that allows people to make their wishes known and a 
healthcare organization that value and respect those choices. 
By expanding Gundersen's end of life care model across the 
nation, healthcare systems will engage their patients in the 
right discussions, developing the mechanisms to incorporate 
those wishes into their treatment plans. Please take a minute 
to read the information at the end of my written testimony 
which outlines our Gundersen Lutheran end of life care system. 
The work and proven results of our system, our transforming end 
of life care to increase continuity of care, quality of care 
and respect for patients' wishes while lowering the cost and 
reducing overall utilization of the healthcare system.
    As you move forward my strongest recommendation is that you 
would remove barriers and create incentives to expand this 
successful end of life care planning nationwide. Any policy or 
regulations regarding advanced care planning should incorporate 
six principles. They are briefly.
    One, healthcare professionals should have all adults 
understand and document their end of life care goals and 
preferences, as well as designate an end of life care 
decisionmaker.
    Two, there should be a process to convert treatment goals 
and preferences into medical orders to ensure information is 
transferable and honored.
    Three, universal implementation of electronic medical 
records and internet-based personal health records shall 
include and integrate timely information relevant to the 
patient's advance directives.
    Four, if no advance directive exists at the time of need 
any authentic expression of an individual's goals, values or 
wishes with respect to healthcare should be honored.
    Five, Federal support for research, education and expansion 
of the best practice relating to the quality and continuity of 
care related to advanced directives and the end of life.
    Six, Medicare would reimburse organizations at a higher 
level if certain advanced care planning outcomes were met.
    For example, if 85 percent or more of the adult decedents 
had a written advance directive found in the medical record at 
the site of care. The wishes expressed in the document were 
consistent with the treatment provided rather than reimbursing 
for a specific event. Payment would be hinged on outcomes that 
meet performance benchmarks.
    On behalf of my Dad and my friend, Annette, I ask you to 
give families and loved ones the opportunity to experience this 
gift of love and give the medical community the ability to 
fulfill the wishes of their patients. Thank you for this 
opportunity to speak to you today about this important issue.
    [The prepared statement of Ms. Curran follows:]


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    Senator Whitehouse [presiding]. Thank you, Ms.
    Curran. Now before we go to Mr. O'Connor, I want to 
acknowledge the arrival of Chairman Rockefeller, my Chairman on 
the Intelligence Committee, who is probably the leading 
champion in the Senate on these issues, particularly as it 
relates to the Federal healthcare system. So we are extremely 
honored, Chairman, that you are here. I invite you to say a few 
words, if you would like.
    Senator Rockefeller. I'm rendered speechless. I will honor 
this Committee by saying nothing--ask questions.
    Senator Whitehouse. Very good. Mr. O'Connor?

  STATEMENT OF JOSEPH O'CONNOR, CHAIR, COMMISSION ON LAW AND 
        AGING, AMERICAN BAR ASSOCIATION, BLOOMINGTON, IN

    Mr. O'Connor. Thank you, Mr. Chairman and members of the 
Committee. I am here as Chair of the Commission on Law and 
Aging of the American Bar Association which has tracked the 
changing legal landscape of state health decisions legislation 
for more than 20 years. We have provided details of these 
changes in our written testimony and ask that the written 
testimony be admitted into the record.
    Since 1976 when California adopted the first so-called 
living will statute, the legal framework of health decisions 
law has evolved incrementally. States initially placed strong 
emphasis on standardized legal formalities and procedures. 
These were requirements and limitations intended to serve as 
protections against abuse and error.
    I will call this approach the legal transactional approach, 
which focused on the formalities of creating and implementing 
specific legal instruments to direct or delegate health care 
decisions including standardized statutory forms, required 
disclosures or warnings, prescribed phrases or words or even 
font size and prescribed witnessing or notarization. However 
research over the last 30 years has found that the legal 
transactional approach often served to impede rather than 
promote effective advance care planning. In recognition of 
these shortcomings, state policies gradually moved toward a 
more flexible process of communication. This communications 
paradigm involves efforts to discern the individual's changing 
priorities, values and goals of care and to meaningfully engage 
a proxy and others who will participate in the healthcare 
decisionmaking process.
    The 1993 Uniform Healthcare Decisions Act represented the 
first concrete milestone in this redirection by offering a 
model of simplicity that prompted many states to combine 
disparate, statutory and regulatory provisions into simpler, 
comprehensive acts. Complementing this trend in the law is a 
growing awareness of policy that no matter how good the 
communication may be between patient, family and physician, 
healthcare is provided in a regimented, confusing and fast 
moving system in which patient wishes can easily be overlooked. 
How can we make sure that the goals and preferences of the 
patients are actually translated into the language and 
processes of the healthcare system?
    An emerging strategy that began in Oregon has had a 
positive impact in bridging this crucial gap. It's called 
Physician's Orders for Life Sustaining Treatment or POLST, as 
well as by other names in different states. To date, eight 
states have authorized the use of versions of the POLST 
Paradigm, statewide and parts of several other states are 
implementing it on a local basis.
    The primary Congressional foray into this subject is the 
Patient Self Determination Act of 1990 which at its heart is an 
information and education mandate. It didn't create or change 
any substantive right to healthcare decisionmaking. But it did 
require that patients be asked if they had an advance directive 
and be given information about them.
    Congress took a more proactive approach in 1996 for 
military personnel by expressly exempting directives of 
military personnel from state law requirements. Given the 
unique need of military personnel this exception can't really 
be viewed as trend toward greater Federal control over advance 
directive law. But it does raise the question about what 
actions might be effective in encouraging a policy and practice 
shift supportive of the communications model of advanced care 
planning.
    Our written testimony enumerates several possible 
strategies with some of their pros and cons which we offer as 
ideas for consideration, not as policy prescriptions. I will 
highlight three of these.
    Overcoming the variability of state law. Congress could 
expand the military ``advanced directive'' approach and in 
effect, create a Federal ``advanced directive,'' at least for 
Medicare and Medicaid patients. But of course, that strategy 
raises obvious state rights issues as well as the danger that a 
standardized Federal form would, like state forms, put more 
emphasis on formality rather than on reflection and 
communication.
    The second effort might be to affirm the principle of self 
determination. This principle is central to both common law and 
constitutional law. Yet it sometimes is limited by the 
formalities of state ``advanced directive'' laws.
    Idaho's statute provides an instructive affirmation of the 
principle. Their advanced statute simply states, ``Any 
authentic expression of a person's wishes with respect to 
healthcare should be honored.'' This does not create any new 
writer obligation. It merely cites in simple terms a 
fundamental principle and focuses the inquiry on accurately 
determining the person's wishes and goals. It also clarifies 
the roles of statutory advanced directives as one means of 
communication, but not the only.
    The third would be to encourage the POLST Paradigm. 
Congress could require that providers have a process to convert 
treatment and goals and preferences of persons with life 
limiting illness into a highly visible, medical orders and to 
ensure that this information is transferable across all care 
settings. This, of course, is what POLST does.
    With that I will close. I thank you for giving me this 
opportunity on behalf of the ABA to submit a perspective on 
this important subject. Of course, I would be happy with the 
panel members to answer any questions we can.
    [The prepared statement of Mr. O'Connor follows:]
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    Senator Whitehouse. Thank you, Mr. O'Connor. Dr. Meier, 
we're now delighted to turn to you.

 STATEMENT OF DR. DIANE E. MEIER, GAISMAN PROFESSOR OF MEDICAL 
    ETHICS, DEPARTMENT OF GERIATRICS, MOUNT SINAI SCHOOL OF 
                     MEDICINE, NEW YORK, NY

    Dr. Meier. Senator Whitehouse, Chairman Kohl and other 
distinguished Committee members, thank you for this opportunity 
to speak with the Senate Special Committee on Aging. I am a 
Geriatrician and a Palliative Care physician at the Mount Sinai 
School of Medicine in New York City. What I'm going to talk 
about today is not advanced care planning per say, but about 
palliative care which is strongly related to it and will be a 
somewhat different perspective than what you'll be hearing from 
my colleagues on the panel.
    Palliate care is medical care focused on relief of 
suffering, and support for best possible quality of life for 
people with serious illness and their families. It is delivered 
at the same time as all other appropriate medical care 
including curative or life prolonging, care should that be 
appropriate for the patient.
    In addition to my work at Mount Sinai I lead a national 
initiative called the Center to Advance Palliative Care whose 
mission is to improve access to the quality of palliative care 
in American hospitals. I was drawn to this work because of my 
distress over many decades working in a large academic teaching 
hospital about how our sickest and most vulnerable fellow 
citizens are treated in U.S. hospitals. I'm going to tell you a 
story about one of my patients which I think exemplifies the 
urgent need for palliative care in hospitals. I hope that will 
put a human face on the data that I will be presenting 
subsequently.
    Mrs. J was an 85 year old woman with multiple problems 
including dementia, coronary disease, kidney failure, who was 
admitted to the ICU with a bloodstream infection. Her hospital 
course was complicated by the development of gangrene in her 
left foot and many deep pressure ulcers on her back resulting 
from prolonged, intensive care unit bed rest. She underwent 
five surgical debridements of her wounds under general 
anesthesia. When they were asked by her primary doctor, her 
family consistently said they wanted everything done.
    On day 63 of her hospital stay a palliative care consult 
was initiated to help clarify the goals of this hospitalization 
and to treat Mrs. J's evident pain and discomfort. She was 
persistently moaning in pain and would scream and lash out and 
resist care when the nurses tried to change her surgical 
dressings.
    The Palliative Care team, me, a nurse, a social worker and 
a couple of medical students, met with her son who was her 
health care proxy and her two grandchildren. During what turned 
into a 90 minute discussion, we clarified confusion about her 
diagnosis and prognosis. We asked the son a different question. 
We asked him what he was hoping we could accomplish for his 
mother. What he said was, ``she's in so much pain. Why can't 
they do anything about it? They said the pain medicines would 
make her more confused, but she gets more confused every day 
that I come to see her. When I visit all she does is moan and 
turn her face away from me.''
    Possible sources of discomfort and pain were identified. A 
treatment plan including morphine for her pain and extra doses 
of morphine 30 minutes before dressing changes was initiated. 
We started Tylenol for her fevers. We stopped the antibiotics 
which she'd been on for two months with absolutely no benefit 
to her fevers or her wounds.
    She got pain relief and had a marked improvement in mood, 
interaction and function. She began to tolerate her dressing 
changes without resistance, participated in physical therapy, 
actually was able to get out of bed and into a chair and 
enjoyed visits with her family. She was discharged from the 
hospital several days later back to the nursing home that she 
had lived in before she was admitted to the hospital but this 
time with a referral for hospice care on return to the nursing 
home.
    The Hospice team followed the care plan that was developed 
in the hospital and continued provision of expert pain 
management and expert wound care. The patient slowly recovered 
actually near to her previous state of health and awareness and 
interaction. The family expressed tremendous satisfaction with 
the resolution of her stay and continued to visit her daily in 
the nursing home where they reported to me that she was 
interactive and comfortable.
    Patients like these are the basis and the motivation for 
the development of hospital palliative care programs in the 
U.S. This patient had a health care proxy. This patient had 
expressed her prior wishes. So it's not that there was a 
failure of advance care planning.
    She was getting the wrong care. She was in the wrong place. 
She and her family suffered enormously. The cost of her over 
two month hospitalization, and this was several years ago, 
exceeded 100,000 dollars. When goals and alternatives were 
clarified, a process that required skilled and expert 
communication and discussion with her exhausted and distraught 
family, the patient was able to go back to her home, be among 
familiar care givers, her pain was easily controlled her wounds 
began to heal and she was restored back to herself, a process 
that required the intervention of the palliative care team to 
help her get on the right path.
    Palliative Care Programs in hospitals are a rapidly 
diffusing innovation and have been shown in multiple studies to 
both improve quality and reduce costs for America's sickest and 
most complex patients. The chronically and seriously ill in the 
United States constitute only 5 to 10 percent of our patients, 
but account for well over half of the nation's healthcare 
costs. Palliative care programs are a solution to this growing 
quality and cost crisis.
    Palliative care is not the same as hospice. Non-hospice 
palliative care is appropriate at any point in a serious 
illness from the time of diagnosis. There is no prognostic 
requirement, and no requirement to give up curative care. 
Hospice is a form of palliative care provided for people with 
serious illness who are clearly in the last weeks to months of 
life-they must have a two MD-certified prognosis of 6 months or 
less which is very difficult to predict, and must sign a piece 
of paper giving up their right to insurance coverage for 
curative care.
    Palliative care improves the quality of patient centered 
care while reducing costs because it begins with the goals and 
preferences of the patient and the family. As in the case of 
Mrs. J, palliative care-teams support the development of 
realistic care plans to meet these goals. How are healthcare 
costs reduced? Seriously ill patients are actually able to 
leave the hospital, the most expensive setting of care and get 
care in settings more appropriate to their needs, often where 
most of us would like to be, at home.
    This is possible because we ensure very sophisticated 
transition and discharge planning. This patient, Mrs. J could 
not have gone back to her nursing home without development of a 
very detailed and expert pain and wound management plan. He was 
the expertise of the palliative care team that allowed us to 
safely send her out of the hospital.
    Senator Whitehouse. Yes.
    Dr. Meier. Should I stop?
    Senator Whitehouse. If you could summarize.
    Dr. Meier. Alright, I'll summarize. Just to say there's 
enormous state by state variation in access to palliative care, 
like everything else in the American healthcare system. While 
there are a lot more palliative care programs than there used 
to be, if you're a poor person, if you're in a public hospital, 
a sole community provider hospital or if you happened to be 
served by a for profit hospital, you are much less likely to 
have access to palliative care.
    The three key barriers to improving access to palliative 
care are first, that there is no graduate medical education 
support for palliative care fellowship training because of the 
cap from the 1997 Balanced Budget Act on graduate medical 
education. So we cannot pay to train physicians to specialize 
in palliative medicine.
    Second there is no support for junior faculty members 
trying to be the teachers and the researchers that are needed 
to promote this kind of care for future generations of doctors 
and nurses. We are promoting something along the lines of the 
Geriatric Academic Career Awards, the GACA, but this time for 
palliative care, Palliative Academic Career Awards.
    Third, there has been an appallingly inadequate level of 
NIH investment in palliative care research. We have absolutely 
no evidence base to support our work. The major institutes, 
NCI, NHLBI, NIKKD and others have done little or nothing to 
support research in palliative care. That imbalance needs to be 
corrected.
    Thank you very much.
    [The prepared statement of Dr. Meier follows:]
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    Senator Whitehouse. Dr. Teno.

 STATEMENT OF DR. JOAN TENO, PROFESSOR OF COMMUNITY HEALTH AND 
 MEDICINE, WARREN ALPERT SCHOOL OF MEDICINE, BROWN UNIVERSITY, 
                         PROVIDENCE, RI

    Dr. Teno. Good morning. I want to thank you for the 
opportunity to speak to the needs of older Americans dying in 
nursing homes. My name is Dr. Joan Teno. I'm a Professor of 
Community Health and Medicine at the Warren Alpert School of 
Medicine.
    Senator Whitehouse. Dr. Teno, could you hold the microphone 
a little bit closer? Everybody will hear better if you do.
    Dr. Teno. Ok, how's this? I've had the privilege of being 
involved in more than 150 publications, numerous grant awards, 
yet if you search my name using the Google search engine, the 
headline associated with my name is cat predicts death in 
nursing home. Indeed, in Rhode Island, we have a cat named 
Oscar who lives at the Steere House Nursing home who regularly 
holds vigils with people dying from dementia on the locked 
dementia unit.
    We wrote a short piece that was published in the Newman 
Journal by a friend of mine, Dr. David Dosa and that piece 
trans-global. Who would imagine that Oscar the cat, the cat 
that sits with people dying from dementia would become the 
topic of coffee breaks and would be the discussion at dinner 
tables? This experience illustrates what a touch tone issue 
dying in nursing homes are for so many people across the United 
States.
    Today I'd like to speak to you about the importance of 
nursing homes in end of life care, the opportunities to 
improve, evidence that we can improve and suggest solutions for 
consideration of Congress.
    First, nursing homes are the final place of care in sight 
of death for one in four Americans. Forty percent of persons 
who die spend some time in a nursing home in their last months 
of life. Nursing homes are the last safety net for an 
impoverished elderly who can't afford care needed to remain at 
home. Many don't have families and high quality nursing homes, 
such as the one that Oscar the cat lives, the nursing home 
staff become the sole source of love and care for these older 
people.
    Yet there are important opportunities to improve. In a 
nationwide study that I conducted while at Brown University, we 
found that one in three bereaved family members reported the 
need for better pain control in a nursing home. They did not 
have enough emotional support. They stated that their loved one 
was not treated with dignity.
    Only 42 percent rated the care of their loved one as 
excellent compared to 70 percent of those persons dying with 
hospice services. Sadly, nursing home residents are often lost 
in between transition between an acute care hospital and a 
nursing home. They're sort of lost there going back and forth.
    Let me just give you some numbers to illustrate that. In 
the United States, the rate of healthcare transitions in the 
last 6 months of life for people residing in a nursing home 
varies from a low of 1.9 in Salem, OR to a high of 5.1 
transitions per person in Monroe, LA. So that means almost 
every 30 days someone's moving to a different location. But 
most of those movements probably is in the last several weeks 
of life.
    Such transitions are costly, can often be avoided and lead 
to interventions that many would classify as futile. The key to 
decreasing this rate of healthcare transition is promoting 
advance care planning. A process of communication that 
clarifies patient preferences and formulates a plan of care 
that ensures those wishes will be honored.
    The good news is we can improve. Let me tell you about the 
experience in Rhode Island. In Rhode Island, we became focused 
on the fact that one in seven nursing home residents had 
persistent or severe pain. A community, state, government 
partnership in Rhode Island achieved a 43 percent reduction in 
severe pain. This effort would not have been possible without 
the Attorney General's Task Force at End of Life Care created 
by Senator Whitehouse, then Attorney General of Rhode Island.
    Finally, let me leave you with some proposed solutions for 
consideration of Congress.
    First, a key step to decreasing the weight of costly, but 
burdensome healthcare transitions are to promote advanced care 
planning. Obviously this needs to be done at a community level.
    Second, Congress should assure there are sufficient number 
of physicians with needed training and skills in hospice and 
palliative medicine.
    Third, we need to tackle the issue of reducing healthcare 
transition through promoting advance care planning. Fostering 
hospital/nursing home partnership is one way forward. There's 
some very good evidence coming out of Sacramento that will 
demonstrate that partnerships between the hospitals and nursing 
homes can improve, not only the quality of life, but also 
reduce terminal hospitalizations. The bottom line is hospitals 
need to take a leadership role.
    Fourth, the current Medicare and Medicaid service ruling 
that will cut hospice reimbursement by 5.5 billion dollars 
should be rescinded. I urge your support of the Medicare 
Hospice Protection Act. Furthermore, I would urge you to expand 
the role of hospice in a cost neutral manner.
    The hospice benefit was created around the dying trajectory 
of people dying of cancer. Now increasingly dementia is the 
fifth leading cause of death in the United States. We need to 
assure that those persons and their families afflicted with 
dementia have the same access to palliative care as those 
people dying of cancer. The current financial incentives under 
Medicare result in multiple, costly hospitalizations. This 
expansion should be done in a manner that guarantees high 
quality care through appropriate regulatory oversight and 
public reporting of hospice quality.
    As one elderly woman wrote to us in an email message, she 
hoped she would die in a nursing home with a cat on her bed. 
Our hope is policymakers will recognize the importance of 
adequate funding so that a hospice nurse, social worker, 
spiritual counselor and a volunteer can be at that person's 
bedside, who must adequately fund and demand high quality care 
for frail, older Americans who's last home is a nursing home. I 
thank you for the opportunity to speak with you today.
    [The prepared statement of Dr. Teno follows:]

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    Senator Whitehouse. Thank you, Dr. Teno. It's now my honor 
and privilege to call on Attorney General Drew Edmondson.

 STATEMENT OF W.A. DREW EDMONDSON, OKLAHOMA ATTORNEY GENERAL, 
                       OKLAHOMA CITY, OK

    Mr. Edmondson. Thank you, Senator Whitehouse, Chairman 
Kohl, members of the Committee. I'm honored to be asked to be 
here today, particularly honored to be with two of my former 
colleagues, who after accomplishing great things in the Office 
of Attorney General had the good sense to move on. I will try 
to remember that the prerogative of unlimited debate on the 
Senate side rests with the Senators and not with the witnesses.
    We are here talking about an issue that we tend to think in 
terms of an issue belonging to the elderly. I would simply 
remind in passing that two of the highest profile cases we have 
had, the Terry Schiavo case and the Nancy Cruzan case involved 
people in their 20's and that when we talk about advance 
directives and conversations, we need to be having these 
conversations with our children as well as with our parents. So 
that was a point that I wanted to make in passing.
    I got involved in this issue because of a meeting that I 
attended with my wife, who is a medical social worker. It was 
her meeting. I was there as the spouse. The speaker was Myra 
Christopher, who at that time was Executive Director of the 
Midwest Bioethics Center which is now the Center for Practical 
Bioethics.
    Myra Christopher, addressing the audience said, if I were 
to ask you what you envisioned and hoped for in your end of 
life, some 80 percent of you if you track national polls, would 
say that you would prefer to die at home, free from pain and in 
the company of family and friends. Myra went on to say, you can 
turn that statistic on its head because in fact, some 80 
percent of you will die in a hospital or nursing facility, you 
will die in pain that could be managed and is not being managed 
and you will die isolated from family and friends. It was not 
my meeting, but I was sitting there as Attorney General saying, 
what's wrong with this picture?
    Every person in the State of Oklahoma is a consumer of 
healthcare and they were all constituents of mine. If there are 
barriers between what people want in their end of life 
situation and what they're actually receiving in the real 
world, I need to find out what those barriers are and what we 
can do to eliminate them. So we had the conference, the 
listening conferences on end of life care around the nation, in 
Kansas City, in Baltimore, and in San Diego.
    We asked three questions from a consumer standpoint. Will 
my wishes be known and honored? Will I receive adequate pain 
management? Will I receive competent care?
    We assembled panels of experts. We assembled people who had 
gone through this experience with loved ones. The stories that 
we heard were shocking and frightening about advanced 
directives that were not followed, people who were in pain that 
could be managed and were not treated across the country and 
the call to action was unmistakable.
    That call has been answered in many states and by the 
Federal Government in many ways at conferences, task forces, 
initiatives in state after state. So I commend you for 
continuing that effort to answer those questions and provide a 
better situation for people who are facing those situations. I 
would offer two things that you might consider in doing that.
    First, physicians deserve adequate medical care 
reimbursement for the time they take to discuss end of life 
decisions and advanced care planning with their patients. The 
counseling that physicians provide about advance directives is 
as important as any test or procedure that they might provide.
    Second, the six month terminal diagnosis that is required 
for the Medicare Hospice Benefit should be more permeable 
allowing terminally ill hospice patients access to palliative 
treatment, not currently allowed. There should not be an 
artificial division between ordinary medical care and hospice 
care.
    I hope that the things that have been done by Attorneys 
General have been helpful in reaching these goals and answering 
those questions. I am very hopeful that the work that you're 
engaged in: the work that you're talking about doing, the work 
that will go forward by this Committee and the Congress of the 
United States will do that as well.
    We were told during our conferences by an Assistant 
Attorney General named Jack Schwartz from the State of Maryland 
that if at the end of our terms that we could say that as a 
result of our work, we had lessened the level of human 
suffering in our states. Than no matter what else we do, we 
could count our service to be well done. I offer that same 
commendation to you. Thank you very much.
    [The prepared statement of Mr. Edmondson follows:]
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    Senator Whitehouse. Thank you Attorney General Edmondson. 
Our final witness is Dr. Bomba.

  STATEMENT OF DR. PATRICIA BOMBA, VICE PRESIDENT AND MEDICAL 
DIRECTOR, GERIATRICS, EXCELLUS BLUECROSS BLUESHIELD, ROCHESTER, 
                               NY

    Dr. Bomba. Senator Whitehouse, Chairman Kohl, members of 
the Committee, thank you for the opportunity to provide 
testimony today. It's not about me. It's not about you. It's 
really, truly about the people we serve.
    I've had an interest in end of life care, personally and 
professionally since 1983. It's poignant that I'm here today as 
our family has suffered four losses in the past 9 months with 
four elders age 75 to 95, including my mother, maternal and 
paternal uncle and my maternal aunt. My uncle is being buried 
today.
    I would like to end with some positive stories that reflect 
advance care planning can have a positive outcome. The 
variation in terms of where palliative care and hospice has 
provided can be across the board. My paternal uncle died 
acutely and received intensive palliative care in an intensive 
care unit. My second uncle who was just transferred and died 
this past week was able to be transferred from an intensive 
care unit into a free standing hospice unit and died 
peacefully. My mother was able to die in our home after 3 
months of hospice care. They all received intensive palliative 
care services. Their stories were different.
    What they had in common was that the conversation that we 
had not only with their providers, but within our family made 
the difference. Even as an expert, at the end, we have our 
emotions and you're still losing a mom. My expertise came from 
an 85 year old woman who in 1983 challenged me to say, you 
don't feel comfortable talking about death and you must because 
it's about my death, not your death. She taught me how 
important it was to be able to provide accurate prognostication 
so that her end of life and her final chapter could be hers.
    The importance of informed medical decisionmaking and not 
just asking would you like this intervention or not and to have 
it based on goals for care. Being sure the patient is able to 
understand if the treatment would make a difference, understand 
the benefits and burdens, and if is there is hope of recovery, 
what would life be like afterwards? Most importantly what do I 
value focussing on the importance of patient centered care in 
separating out personal wishes verses the professional's.
    Eight years ago I assumed a position in a not-for-profit 
health plan. In the role I represent not only myself or the 
health plan, but frankly I'm the leader of a community wide, 
end of life palliative care initiative. So I here represent 
countless individuals, healthcare professionals, professional 
associations and consumers.
    Before I talk about the two major advance care planning 
initiatives, I want to share about the initiative. We started 
in Rochester, NY with more than 150 community volunteers, a 
broad perspective of healthcare professionals from hospitals, 
from nursing homes, disease management programs. We included 
consumers.
    We have a broad coalition with diversity from both a 
spiritual and cultural perspective. We have leadership that 
included consumers. We focused in four major areas.
    We want to increase the completion rate of advance 
directives. We want to assure that once those were honored that 
we would assure that preferences were honored once the 
directives were there. We want good pain and symptom 
management. We want to focus on education and communication.
    We've developed programs that I'll speak of today. One is 
the Community Conversations on Compassionate Care, a program to 
encourage all individuals 18 and older, to do traditional 
advance directives. In our state, a healthcare proxy, in other 
states a durable power of attorney for health care. Focusing on 
two important concepts, who is the right healthcare agent, not 
necessarily the daughter, the son, but who is the right person 
who can act on behalf of the individual? Second, what are the 
values, beliefs of the individual?
    We've encouraged that for everyone including young people. 
As our colleague Attorney General Drew Edmondson said, it's not 
just for the serious ill, but we need to think about young 
people as well. We ask people to have value statements.
    My son, who is currently a 25 year old law student's value 
statement was, ``without my mind, pull the plug. It's my time. 
If I have the ability to think, to feel, to speak then yeah, 
I'll stay.'' The concept was personhood, but it wasn't merely 
written on a document. It was shared in a family discussion 
around the kitchen table. We call them healthcare proxy 
parties. So we encourage that type of discussion.
    We also had a second group called MOLST. We developed the 
Medical Orders for Life Saving Treatment Program, which is New 
York State's version of the POLST Paradigm program that you've 
heard spoken of earlier. We focused on community principles of 
pain management. We have developed a community website.
    We began with data. We started with the community survey 
after the Institute of Medicine said we could do better 
nationally. What we found looked at advance directive rates 
hospice referrals and pain management.
    Less than 20 percent of our patients in home care services 
had advance directives at that time without regard for whether 
they had cancer, heart disease, lung disease or dementia. We 
knew we could do better.
    Senator Whitehouse. If you could sum up when you have a 
chance, Dr. Bomba.
    Dr. Bomba. What's that?
    Senator Whitehouse. We're beyond time. If you could sum up?
    Dr. Bomba. Oh, ok. The program on community conversations 
includes five easy steps to get people to be motivated to 
complete directives. The MOLST program was put together based 
on national research.
    We were able to find the POLST program and we adapted it 
for New York State. We've been able to change what we weren't 
able to have in our state currently which was EMS was not 
allowed to follow any form but a simple form. They were not 
allowed to follow do not intubate orders.
    We've changed the scope of practice. Governor Patterson 
signed the MOLST into law in July of this year. We have had 
training across the country.
    What I would ask the Committee to consider is to look at 
the POLST Paradigm as a national model. That has been 
recommended before. I would also suggest looking at the 
national quality forum, five platforms for advanced care 
planning. Assuring a system wide approach to knowing who 
surrogate decisionmakers are.
    Second, to understand values at every site of care.
    Third, for the right group, those with a prognosis with 
seriously ill individuals a prognosis of less than a year, 
covert the orders--convert the wishes, rather, into actionable 
medical orders with a promise by healthcare professionals to 
follow those orders because Oregon has found that that works.
    The next is to assure accessibility and to do community 
education programs.
    I would concur with Attorney General Edmondson in terms of 
funding with one caveat. We need to align incentives for the 
conversation. We need to incentivize action. We need to be able 
to look at Medicare currently and recognize that we can't just 
do face to face conversations.We need to be able to acknowledge 
conversations with healthcare agents. As well as guardians.
    Senator Whitehouse. Thank you very much.
    [The prepared statement of Dr. Bomba follows:]
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    Senator Whitehouse. Thank you, Dr. Bomba. Before we go to 
questions I would like to call on Susan Collins of Maine, my 
colleague, who has graciously joined us. If she'd like to share 
a few words, I'd be gratified.

                  STATEMENT OF SENATOR COLLINS

    Senator Collins. Thank you very much. I want to pride your 
decision to hold this hearing and The Chairman.
    I've worked so long on end of life care with my colleague 
from West Virginia. This is an issue that we joined together on 
my very first year in the Senate. I'm delighted that he's 
joined us as well.
    Mr. Chairman, in the interest of time since I had to be at 
another hearing I'd ask permission to have my full statement in 
the record.
    [The prepared statement of Senator Collins follows:]

              Prepared Statement of Senator Susan Collins

    I want to thank the Chairman and my colleague from Rhode 
Island for calling this morning's hearing to examine ways that 
we can improve how we care for people at the end of their 
lives.
    Noted Princeton health economist Uwe Reinhardt once 
observed that ``Americans are the only people on earth who 
believe that death is negotiable.'' Advancements in medicine, 
public health and technology have enabled more and more of us 
to live longer and healthier lives. When medical treatment can 
no longer promise a continuation of life, however, patients and 
their families should not have to fear that the process of 
dying will be marked by preventable pain, avoidable distress, 
or care that is inconsistent with their values and needs.
    The fact is that dying is a universal experience. Clearly 
there is more that we can do in this country to relieve 
suffering, respect personal choice and dignity, and provide 
opportunities for people to find meaning and comfort at life's 
conclusion.
    Unfortunately, most patients and their physicians do not 
currently discuss death or routinely make advance plans for 
end-of-life care. As a consequence, about one-fourth of 
Medicare funds are now spent on care at the end of life that is 
geared toward expensive, high-tech interventions and "rescue 
care." While most Americans say that they would prefer to die 
at home, studies show that almost 80 percent die in 
institutions where they may be in pain and where they may be 
subjected to high-tech treatments that merely prolong 
suffering.
    I have worked with my dear friend and colleague from West 
Virginia, Senator Rockefeller, on a number of initiatives 
designed to improve the way our health care system cares for 
patients at the end of their lives.
    The Medicare physician fee-fix bill passed by the Congress 
earlier this year includes a Rockefeller bill that I 
cosponsored that requires physicians to include a discussion 
regarding advance directives during the initial ``Welcome to 
Medicare'' physician visit to which all Medicare beneficiaries 
are entitled.
    I have also joined the Senator from West Virginia in 
introducing the broader Rockefeller-Collins Advanced Planning 
and Compassionate Care Act which is further intended to 
facilitate appropriate discussions and individual autonomy in 
making decisions about end-of-life care.
    For example, our bill requires that every Medicare 
beneficiary receiving care in a hospital, nursing home, or 
other health care facility be given the opportunity to discuss 
end-of-life care and the preparation of an advance directive 
with an appropriately trained professional within the health 
institution. The legislation also requires that, if the patient 
has an advance directive, it must be displayed in a prominent 
place in the medical record so that all the doctors and nurses 
can clearly see it.
    The legislation also establishes a telephone hotline to 
provide consumer information and advice concerning advance 
directives, end-of-life issues, and medical decision making. It 
establishes an End-of-Life Advisory Board to assist the 
Secretary of Health and Human Services in developing outcome 
standards and measures to evaluate end-of-life care programs 
and projects.
    Mr. Chairman, patients and their families should be able to 
trust that the care they receive at the end of their lives is 
not only of high quality, but also that it respects their 
desires for peace, autonomy and dignity. On Monday, I had the 
opportunity to visit the Hospice of Southern Maine's Gosnell 
Memorial Hospice House which is the product of an extraordinary 
collaborative effort to improve the quality of end-of-life care 
for patients in Southern Maine and their families.
    In most cases, hospice care enables dying patients to 
remain in the comfort of their own homes, free from unnecessary 
pain and surrounded by friends and families. The Gosnell 
Memorial Hospice House provides an alternative for those 
individuals for whom care in the home is not longer sufficient. 
It provides a comfortable and attractive home-like setting for 
hospice patients and their families where they can receive 
advanced professional palliative and end-of-life care in their 
final days. The facility is making such a positive difference 
for so many patients and their families and should serve as a 
model for the rest of the nation.
    Again, Mr. Chairman, I thank you for calling this hearing 
which will give us the opportunity to further examine these 
important issues.

    Senator Whitehouse. Without objection.
    Senator Collins. Thank you. I'll just make a couple of 
comments. On Monday of this week I visited a new hospice house 
in Southern Maine. What a wonderful place that was to be for 
people who are dying and their families.
    I was so impressed with the care, the palliative care, 
being provided at this facility. It was a tremendous, warm 
place where the wishes of the patients were accommodated to the 
point that one patient's greatest wish was to die outside. So 
what they did is wheeled the bed outside in a lovely garden so 
that this individual's last wish could be accommodated.
    Even more of a benefit was the peace that it brought to the 
family members. It was an extraordinary facility. But here is 
what is at risk.
    Starting October first, unless we act to block it, there 
are going to be cuts made in reimbursements to home care and 
hospice care. This makes no sense at all by every study and 
every measure home healthcare and hospice care is not only a 
more compassionate way for many Americans to spend their final 
days, but it's less expensive. For CMS and this Administration 
to target home healthcare and hospice care for more than two 
billion dollars worth of cuts over the next 5 years makes no 
sense at all.
    So I just want to make a plea for my colleagues to join in 
figuring out a way for us to block this before it goes into 
effect and time is short. It's October first.
    A quarter of all Medicare dollars go toward end of life 
care, high tech care in hospitals where people are tethered to 
high cost machines even though there's no hope of curing. At 
that point in life most people want palliative care, 80 percent 
as our witnesses are indicated. Yet in most cases they die in 
hospital settings. This simply doesn't make sense.
    We're not honoring the wishes of people at the end of their 
lives. It's costly to care for them in high tech settings. So 
whether you look at it as an economic issue or as an issue of 
compassion, we need to change. We're certainly going in the 
wrong direction if we're going to cut reimbursements for home 
healthcare and hospice care.
    Let me just end by one of my favorite quotes on this issue. 
It's by a noted healthcare economist, Uva Rinehart. I think 
he's at Princeton.
    He once observed that Americans are the only people on 
Earth who believe that dying is negotiable. Obviously it isn't 
negotiable. But surely what is negotiable and what we should 
honor are people's wishes as to the setting in which they die. 
I believe the vast majority of Americans would rather be 
surrounded by family and friends, free from pain and comforted 
in a setting of a home with hospice care or a hospice facility 
which gives you a little higher level of care. So let's direct 
our reimbursement policies toward that goal.
    Again thank you so much for the opportunity to make a few--
a brief statement on this issue about which I feel so 
passionately. Thank you for holding this hearing.
    Senator Whitehouse. Thank you, Senator Collins. Thank you 
so much for your passion on this issue. I agree with you.
    I suspect that if an alien race came from outer space to 
see us as humans and they looked at the way people die in this 
country they would wonder why it is that we choose to torment 
our dying and why we haven't figured out a better way. It would 
seem that way, I think, to people not familiar with unintended 
consequences that have led us to this point.
    I'd like to ask a question that some of you have touched 
on, particularly Ms. Curran and Dr. Meier. As we mentioned when 
I was speaking before the hearing, I've had two very close 
experiences with dying, both people who were of great personal 
dignity and a great desire for personal independence. One was 
my father, who died at home, peacefully, comfortably and with 
great dignity.
    The other was my grandmother-in-law, who despite fierce 
determination that she should go on her own terms, because of 
the way in which she came to the hospital through an emergency 
medical response, was against her will, intubated. We were not 
capable of getting her de-intubated, and she died in exactly 
the way she had urged us to prevent.
    For me, my father's death, as sad as it was, was unclouded 
by any concerns about the way he died. I consider it to be one 
of the great blessings of my life that it happened that way. 
For my wife and for her sister, who felt the responsibility of 
honoring my grandmother-in-law's wishes and who were unable to 
do so because of those circumstances, I believe that there 
remained a cloud on their grieving. I think it really does make 
a very big difference to survivors whether or not they feel 
that they've been able to help their loved one, as you 
mentioned Ms. Curran, accomplish their will.
    I've told this story. You've told your story. Were you 
aware of any place in which this has been documented? We're in 
a building here in which anecdotes are nice, but people like to 
see a little hard data. Has anybody looked at this in any 
qualitative way to the extent to which others suffer because 
somebody else's wishes were denied them at this very vulnerable 
time?
    Ms. Curran. One of the things that we measure at Gundersen 
Lutheran is patient satisfaction outcomes or family 
satisfaction outcomes with the program. So we have data on how 
families feel if they've participated in palliative care, 
hospice care, end of life care planning our model compared to 
those who don't. We just got recent, very, very recent data 
right before I came here that shows that there's a significant 
statistical difference of higher satisfaction with families who 
get what they need for their loved ones at the time of death.
    Senator Whitehouse. Dr. Meier?
    Dr. Meier. Well, actually my colleague, Dr. Teno has done 
most of the high quality research on this topic. As was just 
said all the studies that have looked at it, both in the United 
States and internationally, have shown markedly better 
satisfaction in, as judged by the family survivors, after 
receiving palliative care.
    Senator Whitehouse. Yeah. Joan's work on this has been 
phenomenal. I just happen to be familiar with it because we've 
worked together for so long in Rhode Island.
    For her I would move to my second question. I'd like to ask 
Attorney General Edmondson to comment on it as well. When I 
first got into this issue it was because of Dr. Teno's 
information about the extent to which people died in pain and 
to the extent in which families characterize that pain as 
agonizing or excruciating, which all seemed unnecessary because 
we have the medication to treat that.
    The first concern was that well it's because of us, you 
know, prosecutors. Doctors are scared that if the moment of 
death gets moved forward 30 seconds because of the breathing is 
depressed by a morphine based drug for instance, that could 
technically be prosecutable. Therefore everybody has got to be 
careful about this stuff.
    But as we looked into it, what seemed more to be the case 
was that it was kind of overlooked. If I recall the 
intervention that had the most effect was to add pain as a 
fifth vital sign onto charts and direct doctors' attention to 
it. Then suddenly it all came into play. Family members didn't 
have to be there fighting with the doctor saying, please, 
please, please. My loved one is in agony. Can't you do 
something?
    Could you, Joan and Drew comment on that?
    Dr. Teno. I think one of the experiences that we got out of 
doing a very multi-faceted intervention in Rhode Island is that 
you need to look at this from a community/state partnership. 
You need to bring multiple groups of people together to think 
about what are a series of stepped interventions that you need 
to do to improve end of life care. So as you mentioned the key 
first step is to make sure someone is measuring pain because if 
you don't measure it, you're not going to improve it.
    A key second step is making sure doctors know how to manage 
pain or to make sure there's appropriate resources available in 
the community. For people who are dying in nursing homes one of 
those very important resources is hospice. This is one of the 
things that really I'm so pleased by Senator Collin's comments 
about talking about such an important issue.
    If we cut every hospice's budget somewhere around four to 5 
percent that's going to effect access to end of life care in 
nursing homes. It's going to have a disproportionately effect 
on these family members. These family members, quite poignantly 
will tell you that when hospice becomes involved, they no 
longer had to fight for adequate pain control.
    Yes, this does impact the family. Years later they will 
recall that it's almost like a post traumatic stress disorder 
with these families, almost like they went to Vietnam and they 
came back. They will recall with such sadness on how their 
mother had to struggle and be in pain while dying. It burns a 
permanent record that mars them for the rest of their life.
    Senator Whitehouse. Attorney General Edmondson you used a 
very good word, permeable, about trying to interrupt the 
heartbreak between curative medicine and palliative hospice 
medicine that the present Federal regime seems to require. 
Would you like to comment a little further on that, on the 
context of the pain question whether you've gone the vital 
signs route and whether that helped?
    Mr. Edmondson. One of the things that's very difficult and 
it's very understandable is to get doctors to say that their 
patient is going to die because that's not what they're geared 
to do. Doctors are geared to save lives. Doctors are geared to 
cure. It's very hard to get them to cross over that threshold 
and realize that the death of a patient is not a failure. It's 
a natural process of life.
    Again, my wife, the medical social worker, reversed the 
question when she was in a hospital setting she would ask the 
doctor would you be surprised if this patient died in the next 
6 months or in the next year. That changes the perspective. It 
changes the attitude as to what kind of services are supposed 
to be available.
    On pain and on palliative care we heard many statistics 
during our listening conferences. They ranged but there's still 
high numbers at the bottom ranges. Thirty to 40 to 50 million 
Americans, in pain, today that could be managed and is not 
being managed, 30 to 40 percent of the residents of nursing 
homes, in pain that could be managed and is not being managed.
    One of the barriers to that is the perception by some 
doctors that if they prescribe oxycontin instead of Tylenol 
Number Three, they're more likely to become under investigation 
by either the State Narcotics Bureau or a Medical License 
Review Board or the DEA. We've been working for the last two or 
three years with DEA to try to change those perspectives, and 
to convince the medical community that if they prescribe 
appropriately, if they chart, if they do examinations, they do 
not have to risk investigation or prosecution by narcotics 
agents.
    The paucity of doctors who have been prosecuted, the very 
small percent, are still on the front page of the paper and 
scared the bejesus out of the rest of the medical community. So 
we are also encouraging DEA and local law enforcement when they 
have to have one of those prosecutions to take the next step 
and explain why that doctor was practicing out of the 
mainstream and why this should not be a warning to doctors that 
are prescribing appropriately.
    Senator Whitehouse. Thank you, Attorney General.
    Chairman Kohl?
    The Chairman. Thank you very much. Ms. Curran, in LaCrosse 
at Gundersen Lutheran where you work, you have one of the best 
systems in the country at providing patients with the care that 
they want at the end of their lives. Can you give us some of 
the central elements of that system?
    Ms. Curran. The system starts with every patient. It's part 
of our assessment process. When patients come into the medical 
center regardless of their age, as long as they're an adult, we 
ask about whether or not they have an advance care plan in 
place. So it's part of the assessment process. Through 
education to our medical staff and again, the acceptance in the 
community believe this is the right thing to do for our 
patients.
    In addition to that we have a long history of palliative 
care in our organization. The other thing that we pride 
ourselves in is that we're very close to our patients, 
listening to what they want for care. So, those are probably 
the biggest steps.
    Is No. 1, having advance care planning as part of their 
medical assessment. Even in my routine appointment this year, 
even though my advance directives have been on file for a 
number of years. One of the things my practitioner said to me 
was, do you have any changes you would like to make to your 
advanced care plan. That's part of our routine, I mean, that's 
part of our routine assessment of our patients.
    In addition to that we have a long history of knowing how 
to facilitate these discussions with families and friends. So 
even though the program in its inception in 1986 started with 
the pastoral care department primarily working with people that 
had terminal illnesses or prognoses of terminal illnesses, 
that's moved onto in the community whether it's been with 
churches, social workers, practitioners themselves. It 
permeates the whole organization as well as our community. So 
those are probably the strongest elements of our programs.
    Someone talked about measuring results. We actually have 
two studies that we have done on two people who have advance 
care planning in place? Is it where they need it at the site of 
care? When they need it? Are physicians or medical 
professionals honoring that care?
    We just finished our 10 year follow up and our statistics 
are astounding and the fact that we have over 90 percent in all 
of those categories. In one of them they're 99.
    The Chairman. Thank you very much. Thank you, Mr. Chairman.
    Senator Whitehouse. Chairman Rockefeller?
    Senator Rockefeller. Thank you, Senator Whitehouse and 
Chairman and Susan Collins. Susan Collins and I have, since 
the--what was it, the 105th Congress which was some 50 years 
ago. [Laughter.]
    Have introduced a bill to make people more sensitive to the 
wishes of people who--and it's never gotten anywhere. It's 
never gotten any attention. We may have had a hearing. If there 
was, we weren't on the Committee.
    This is the course. Dana Farber, in 2005, you know they, 
obviously there's a superior hospital. They had 90 percent of 
their medical students and residents surveyed, had positive 
views of physician's responsibility to help patients at the end 
of life prepare for death. Fewer than 18 percent of all of them 
reported receiving any formal end of life care or training on 
palliative care education.
    When geriatricians become geriatricians often find it 
doesn't work enough or pay enough and go off into other fields 
is a major thing. Nobody's addressed this. So the number of 
geriatricians, can that be made up by social workers and 
everybody else?
    My mother spent 12 years dying from Alzheimer's and was in 
the hospital and finally made her wishes--she had all the 
advance directives and everything needed. All four of her 
children agreed with what her wishes were. The hospital 
wouldn't release her, for reasons which you indicated. They 
just wouldn't release her because of the Hippocratic Oath, ``Do 
no harm.''
    That's the question I'd like to ask whoever would like to 
respond to it, whichever one of you would like to respond to 
it. How do you describe, ``Do no harm.'' I mean ``do no harm'' 
to the patient. ``Do no harm'' to the patient in the case of 
Alzheimer's, but not necessarily in other cases where there's 
acute pain. ``Do no harm'' to people who can't feel pain and 
therefore what harm could you be doing them.
    While in the meantime in states like West Virginia, 
families are coming back, their children are coming back from 
other states. Moving back, bankrupting themselves so that, you 
know, their children and then, you know, this constant pattern. 
So what does ``do no harm'' and what is the point at which ``do 
no harm'' crosses the conventional understanding of what that 
means into another doing harm intending not to. Please.
    Incidentally I'm thrilled with what happened to you 
yesterday. But I also noticed that the example that you gave 
was an example that worked. Your entire testimony was about an 
example that worked. My mind is full of cases that didn't work.
    Dr. Meier. I gave this example, because it worked after 63 
days. Mrs. J had 63 days of unremitting suffering with ``do no 
harm'' type care, until a palliative care consult was 
eventually called. So yes, it worked, but rather late.
    So I think the main point is that you cannot expect 
physicians and nurses to relieve suffering which is part of the 
Hippocratic Oath, if they have never been taught how to do so. 
I went to medical school at Northwestern, 4 years of med 
school, 3 years of internal medicine residency, 2 years of 
geriatrics fellowship, 9 years of training at the best 
institutions in this country. Oregon is where I did my 
residency, actually and fellowship, without a single lecture on 
how to manage pain. Not one. No, it was never on the 
curriculum.
    So if you look around at these levels of excruciating and 
tolerable pain in the community, in the nursing home, in the 
hospital, it's very simple. None of us ever learned how to do 
anything about it. Why is there no medical education focused on 
this?
    Part of it is that it's not required by the accreditation 
bodies that accredit medical schools and residency programs. 
Part of it is that there's nothing to allow us to create a 
pipeline of faculty in palliative medicine to teach this to 
future generations of doctors and nurses because we can't get 
any slots because of the cap. Part of it is that we can't get 
people to enter this field in teaching hospitals because 
there's no way they can get grant support. They can't survive.
    So how we fund research, how we fund medical education, how 
we assure a pipeline of experts in this field influences the 
training that your future physicians and nurses will get. If 
they don't have the right training, you can't blame them for 
not knowing what they're doing about the suffering.
    Senator Rockefeller. Even if they do have the right 
training, I don't know how many bills we passed, probably you 
and I Susan, Jack Danforth and I, you know the chart is at the 
end of the bed, one of you were talking about were in 
magisterial form, ignored.
    Dr. Meier. But if the patient is in pain, but the doctor 
literally does not know how to prescribe morphine, they'll 
ignore it. If the doctor does not know what to do about the 
problem, they'll move on to something they do know how to do.
    Senator Rockefeller. How does a doctor not know how to 
issue?
    Dr. Meier. They weren't taught.
    Senator Rockefeller. Morphine?
    Dr. Meier. In literally 9 years of training I never 
prescribed morphine nor did I see it prescribed. I did teach 
myself at the age of 45 how to manage pain having been on a 
faculty of a major medical school for many years before that.
    Senator Rockefeller. So then do the various medical 
associations of hospitals have to sort of, dig in and do some 
very careful planning? I mean, why--
    Dr. Meier. I know it's inconceivable that doctors are not 
taught to manage pain, but it's a fact.
    Senator Rockefeller. Yeah. I know. I totally believe you. I 
also believe in community work, community service. I believe 
that relatively low pay is a very good thing if you teach 
firefighters all the rest of it. Senate is debatable.
    The geriatricians, training to be geriatricians and then 
stopping being geriatricians because they can't make enough 
money and they want to go onto something else just makes me 
think of what's going on up in New York somewhere. It makes me 
very angry. I'd like to have somebody explain to me why this is 
so. Why are they dropping out?
    Dr. Meier. Because they graduate from medical school with a 
quarter million dollars in debt and they can--the average 
salary for a geriatrician in this country is $115,000 dollars a 
year. The average salary for an orthopedic surgeon is $600,000 
dollars a year. There's your explanation.
    Senator Rockefeller. Does that--do they take a Hippocratic 
Oath?
    Dr. Meier. Everyone takes the Hippocratic Oath.
    Senator Rockefeller. Well. Thank you, Mr. Chairman.
    Senator Whitehouse. Senator Collins.
    Senator Collins. Dr. Meier, I want to follow up on the 
discussion you just had with the rest of the panel by asking a 
broader question. That is to what extent do reimbursement 
policies, whether they're Medicare, Medicaid or private 
insurers' influence how end of life care is handled? We've just 
heard how decisions to specialized are influenced by financial 
factors.
    Look at reimbursement policies for me. Do our current 
reimbursement policies under Medicare, Medicaid and BlueCross 
BlueShield and the private insurers actually encourage rescue 
care over palliative care? What kinds of changes should be made 
in reimbursement policies so that we're not biasing the kind of 
care provided toward rescue care over palliative care?
    We'll start with you, Ms. Bomba.
    Dr. Bomba. Thank you. I would say that there's a 
significant impact because we really have traditionally 
followed what Medicare does. Medicare basically looks at 
action. It really does not fund compassion, the conversation 
that is needed to be able to have the discussion on an advance 
care planning that we've talked about this morning, 
particularly with seriously ill patients and then translate 
those into medical orders.
    I would give examples of where you can make changes that we 
did in our own health plan. Palliative medicine physicians have 
only become recognized by the American Board of Medical 
Specialists recently. Back in 2001 we recognized we could not 
develop palliative medicine programs in our communities across 
Upstate New York without really encouraging and paying 
providers.
    So we set up an interim certification process using 
criteria that we developed and the American Board of Hospice 
and Palliative Medicine. We were able to then grow that base of 
providers. We were the first health plan that began to pay 
physicians for this type of activity.
    So that's an example of where we can make a difference. 
We're trying to develop a reimbursement model now to be able to 
look at enhancing the reimbursement for primary care 
physicians, for geriatricians, for hospitals, for people that 
would have these conversations, not only in the hospital with 
hospital based palliative medicine, but in the offices, in the 
home, in nursing homes. Some of the barriers--
    Senator Collins. Excuse me for--but I want to make sure I 
get everybody else's.
    Dr. Bomba. Yes. So some of the barriers end up becoming how 
do we link it in developing a system that mirrors Medicare. 
Some of those are barriers that exist today. So we have to be 
able to turn that around.
    Senator Collins. Thank you. Mr. Attorney General, did you 
have anything on this issue?
    Mr. Edmondson. I mentioned in my testimony I thought it 
would be good to add a reimbursement rate under Medicare for 
doctors having end of life discussions with patients. You know, 
a good doctor will do that, but many doctors are so busy and 
have such overhead that if it's not reimbursable, it's not 
going to happen. It's a very important component.
    Senator Collins. Thank you. Dr. Teno?
    Dr. Teno. I think one of the most perverse Medicare 
reimbursement incentive is the skilled nursing home benefit. It 
results in multiple hospitalizations and it takes dying people 
and keeps them on skilled rehab because the nursing home wants 
to get paid more dollars per day and ends up resulting in a 
very late referral to hospice. Time and time again, as a 
Hospice Medical Director, I'm dealing with someone who spent an 
hour on hospice services.
    Second, and I'll conclude at that, is we need to link 
reimbursement to outcomes and accountability. We need to report 
about the quality of hospital care. There is no measure that 
describes the experience of dying in an acute care hospital and 
they get a free ride on that. They need to be held accountable.
    Senator Collins. Thank you. Dr. Meier?
    Dr. Meier. The system is perfectly designed to get the 
results that it gets.
    For example, my husband is an interventional cardiologist, 
an hour of his time doing an angioplasty, which admittedly is a 
skilled procedure, is several thousand dollars in reimbursement 
from Medicare. Hour of my time meeting with a distraught 
family, such as the 90 minutes I described with Mrs. J's 
family, we billed for the time and we probably got reimbursed 
about $57 dollars from Medicare. You cannot, through fee for 
service billing make a living or support a palliative care 
program under the current Medicare guidelines. So that is a 
major inhibition to the spread of this demonstratably effective 
and efficient type of care.
    Senator Collins. Thank you. Mr. O'Connor?
    Mr. O'Connor. Thank you, Senator. I don't believe the ABA 
has a specific position on this. But I would echo what Attorney 
General Edmondson said that the question becomes whether the 
doctors under Medicare and Medicaid can get reimbursed for 
counseling on end of life decisions and then that gets into the 
whole infrastructure of the reimbursement system that I'm--
these folks are a lot more authoritative on that then I would 
be.
    Senator Collins. Thank you. Ms. Curran?
    Ms. Curran. Gundersen Lutheran may be the anomaly in the 
group. We have a CEO who believes it's all of our 
responsibilities to lower the cost of healthcare.
    To that end we've enacted these different programs. So in 
the last two years the life at Gundersen Lutheran the average 
cost is about $18,000 dollars a year. National average is about 
25,000 a year.
    He certainly gets asked from his board in a fee for service 
market why would you do less. Our response is because it's the 
right thing to do for our patients. Everybody needs to take the 
first step.
    I agree with others, that if you reimburse for outcomes and 
end of life care that you will get a different outcome and a 
better outcome.
    Senator Collins. Thank you. Thank you, Mr. Chairman.
    Senator Whitehouse. Thank you. I'd like to thank the 
Senators who joined us. I'd like to thank the witnesses very 
much.
    I will ask one final question before I conclude the hearing 
that has to do with the POLST Program. Now when we were working 
in Rhode Island we found that advance directives were drafted 
in law firms and read in hospitals. There was a huge 
translation issue between lawyer speak and hospital speak. So 
we tried to redraft those forms in hospital language so at 
least there didn't have to be that translation that took place.
    I mentioned the issue with my grandmother-in-law, who 
against her will was intubated because she didn't have the 
magic bracelet on that nobody knew she needed in order to have 
her wishes honored in that circumstance. Does the POLST, from 
your perspective, Mr. O'Connor, solve both of those problems? 
How would we encourage its further adoption in more states 
without taking away the authority of individual states to make 
their own determinations, which I think is something we wish to 
honor?
    Mr. O'Connor?
    Mr. O'Connor. Let me deal with your first issue first. I 
have been practicing law for 30 years and have been, ever since 
they came out in Indiana, have been helping my clients write 
living wills and healthcare powers of attorney and wondering 
what happens with those after they're written, you know. I've 
got a lot of friends who are doctors and they say they don't 
see them. It's exactly what the studies have now proven to be 
the case. So a better model needs to be put forward. It has 
been.
    The POLST Paradigm was recently at the ABA meeting in New 
York. The entire House of Delegates representing over 600 
lawyers from around the country voted unanimously in favor of 
promoting the POLST Paradigm across the country. What can 
Congress do?
    Senator Whitehouse. Does it lend itself to state level 
differences if there are state level differences? Is it 
flexible in the sense that states with different plans and 
different ideas can still make their own decisions?
    Mr. O'Connor. Almost every state has a similar advance 
directive laws. There are variations from state to state. We've 
got charts that show that.
    But we believe the POLST Paradigm can be adopted in most 
states based on their current statutory framework. Just with 
that addition it doesn't contravene what's already in place for 
the most part. It's a simple, straight forward form. It 
promotes communication between the physician and patient.
    We feel like there's a good group of states that are 
considering even now. There's eight states that have enacted 
it. There's more that are considering it. What Congress can do 
to promote that? I'm not sure, but we would love it if it could 
jump in.
    Senator Whitehouse. Dr. Bomba?
    Dr. Bomba. I would provide clarity that it doesn't replace 
traditional directives. We were able to adopt the Oregon model, 
the POLST Program into New York State, integrating some of the 
complexities of our law that require capacity, determination 
and review of DNR orders. We were able to do it.
    The traditional directives are for everyone as I said 
earlier. The POLST Paradigm or the MOLST are for seriously ill 
patients and they are medical orders signed by a licensed 
physician in that state. In some states----
    Senator Whitehouse. It does trump the statutory obligation 
of EMS folks to resuscitate?
    Dr. Bomba. In fact, absolutely.
    Senator Whitehouse. To intubate?
    Dr. Bomba. To use your grandmother-in-law's example, had 
she had a goal based discussion it would have been translated 
into orders that said, do not resuscitate, do not intubate. But 
with what other choices she would have made regarding 
antibiotic use, IV fluids, peg tube feedings.
    Senator Whitehouse. Her problem was she thought she'd made 
those choices already, but they couldn't be honored by the 
technicians who came.
    Dr. Bomba. What would have been different is they would 
have been written on a medical order form that was hers. It 
would have been posted to her refrigerator and when EMS arrived 
they would have looked at the POLST and said, she has had a 
discussion and this is what she wants.They would follow the 
orders.
    A decade of research in Oregon has shown that people get 
what they want because they are medical orders. It takes away 
the ambiguity of the traditional directives. But it doesn't 
replace them. It should still be a directive for everyone 18 
and older to help with the situations that, Mr. Edmondson spoke 
of and I did, about the young people and avoiding the Terry 
Schiavos of the world to be able to know who the agent is.
    In our state it provides clear and convincing evidence. So 
people follow it.
    Senator Whitehouse. Ok. Well, this has been very helpful. I 
am extremely grateful to all of you for coming and sharing your 
expertise and the personal experiences that so much inform what 
really matters in this question. The record of the hearing will 
remain open an additional week for those who wish to submit 
anything further.
    But with that, we are and with my gratitude, adjourned.
    [Whereupon, at 12:13 p.m., the hearing was adjourned.]
                            A P P E N D I X

                              ----------                              


           Prepared Statement of Senator Robert P. Casey, Jr.

    I would like to thank Senator Whitehouse for bringing us 
together today to discuss end-of-life choices and how we can 
help ensure that an individual's final wishes are honored. This 
is an extremely difficult time for any family. But as science 
and medicine advance and we have the ability to extend life far 
beyond what we thought possible fifty years ago, we must also 
ensure we are honoring a person's wishes. Advance directives 
help to do this.
    Advance directives are not widely used in this country. 
According to a 2007 Rand study, only 18-30 percent of Americans 
have completed any kind of advance directive expressing their 
end-of-life wishes. That figure increases to 35 percent for 
kidney dialysis patients and 32 percent for patients with 
Chronic Obstructive Pulmonary Disorder (COPD).
    Even when people do have advance directives, their 
physicians might not be aware of them. In the Rand study, 
between 65 and 76 percent of physicians whose patients had an 
advance directive were unaware of its existence.
    State laws on advance directives vary widely. Thirty eight 
states have developed their own advance directive or living 
will forms and twelve states will only accept their specific 
forms as legally valid. Twenty three states impose explicit 
limitations on a patient's right to forgo life-sustaining 
treatments or artificial nutrition and hydration.
    In Pennsylvania, any ``competent person'' who is at least 
18 years old, or is a high school graduate, or has married can 
make an advance directive. The advance directive must be signed 
by the individual or someone they designate if they are unable 
to sign and two witnesses who must be at least 18 years old. 
The advance directive becomes operational when the doctor has a 
copy of it and the doctor has concluded that the individual is 
incompetent and in a terminal condition or permanently 
unconscious. The advance directive can be revoked at any time 
and in any manner; the individual simply must tell their doctor 
or other health care provider that they are revoking it. 
Someone who saw or heard the individual revoke the advance 
directive may also pass this information on.
    Clearly, Mr. Chairman, there is still work to be done and I 
look forward to hearing from the witnesses and working with you 
and my colleagues on this committee and in the Senate to 
examine what steps we might take to help in this process.
                                ------                                


               Prepared Statement of Senator Ken Salazar

    Thank you, Senator Whitehouse, for chairing this hearing 
today and to our esteemed witnesses for being here to share 
your expertise. I would also like to recognize Oklahoma 
Attorney General W. Drew Edmondson. Thank you for making the 
pilgrimage to Washington, D.C. and for your public service.
    Today we have an important opportunity to focus on end-of-
life health care decisions that many elder Americans make every 
day. End-of-life health care decisions are difficult, but an 
exceptionally important part of a patient's health. There are 
ethical and legal questions that patients must consider and 
health care providers must contemplate appropriate timing and 
venues for the discussion with their patient.
    Most importantly, end-of-life decisions are important for 
giving elder Americans the dignity they deserve and spare loved 
ones the stress of making decisions about their care. However, 
as reports have shown, few patients document their final 
wishes, and when they do, their wishes are not always followed. 
I was surprised to read that a recent RAND study found that 
between 65 to 76% of physicians whose patients had an advance 
directive were unaware of its existence.
    On July 31, 2008 I introduced a bill entitled the Consumer 
Health Education and Transparency Act to empower consumers to 
make informed health care decisions. An important provision in 
the bill would require the Secretary of Health and Human 
Services (HHS) to collaborate with stakeholders to consider how 
to better prepare Americans for end-of-life care decisions and 
evaluate end-of-life care spending trends.
    In addition, HHS will be tasked with conducting a study to 
evaluate consumer attitudes and questions regarding end-of-life 
care decisions and methods for empowering consumers to ensure 
that their end-of-life care instructions are properly executed. 
It is my hope that the study will help to identify ways to 
ensure that the choices patient's make are honored and 
respected.
    Again, thank you Chairman Kohl for facilitating this 
hearing and to Senator Whitehouse for serving as Chair. I look 
forward to hearing from our witness on what policies would 
support wider completion of end-of-life directives.
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