[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
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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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