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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 

SPECIAL COMMITTEE ON AGING 

HERB KOHL, Wisconsin, Chairman 

RON WYDEN, Oregon 

BLANCHE L. LINCOLN, Arkansas 

EVAN BAYH, Indiana 

THOMAS R. CARPER, Delaware 

BILL NELSON, Florida 

HILLARY RODHAM CLINTON, New York 

KEN SALAZAR, Colorado 

ROBERT P. CASEY, Jr., Pennsylvania 

CLAIRE McCASKILL, Missouri 

SHELDON WHITEHOUSE, Rhode Island 

GORDON H. SMITH, Oregon 

RICHARD SHELBY, Alabama 

SUSAN COLLINS, Maine 

MEL MARTINEZ, Florida 

LARRY E. CRAIG, Idaho 

ELIZABETH DOLE, North Carolina 

NORM COLEMAN, Minnesota 

DAVID VITTER, Louisiana 

BOB CORKER, Tennessee 

ARLEN SPECTER, Pennsylvania 

DEBRA WHITMAN, Majority Staff Director 

CATHERINE FINLEY, Ranking Member Staff Director 

(II) 

C O N T E N T S 

Page 

Opening Statement of Senator Herb Kohl ............................................................. 1 

Opening Statement of Senator Sheldon Whitehouse ............................................ 2 

Opening Statement of Senator Ron Wyden ........................................................... 4 

Opening Statement of Senator Ken Salazar ......................................................... 6 

Opening Statement of Senator Susan Collins ....................................................... 104 

PANEL I 

Statement of Joan Curran, Executive Director—External Affairs, Gundersen 

Lutheran Medical Center, LaCrosse, WI ........................................................... 7 

Statement of Joseph O’Connor, Chair, Commission on Law and Aging, American Bar Association, Bloomington, IN .............................................................. 11 

Statement of Dr. Diane E. Meier, Gaisman Professor of Medical Ethics, Department of Geriatrics, Mount Sinai School of Medicine, New York, NY ....... 39 

Statement of Dr. Joan Teno, Professor of Community Health and Medicine, 

Warren Alpert School of Medicine, Brown University, Providence, RI ........... 65 

Statement of W.A. Drew Edmondson, Oklahoma Attorney General, Oklahoma 

City, OK ................................................................................................................ 76 

Statement of Dr. Patricia Bomba, Vice President and Medical Director, Geriatrics, Excellus BlueCross BlueShield, Rochester, NY ..................................... 82 

APPENDIX 

Prepared Statement of Senator Robert P. Casey, Jr. ........................................... 117 

Prepared Statement of Senator Ken Salazar ........................................................ 117 

Additional information from Dr. Patricia Bomba ................................................. 119 

Statement of Richard Grimes, President and CEO, Assisted Living Federation 

of America ............................................................................................................. 123 

Statement and additional information from Barbara Lee, President, Compassion and Choices ................................................................................................... 125 

(III) 

(1) 

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 

2 

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. 

3 

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, multisite 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.] 

4 

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 

5 

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 

6 

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 

7 

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 docVerDate Nov 24 2008 14:37 Jun 25, 2009 Jkt 000000 PO 00000 Frm 00011 Fmt 6633 Sfmt 6633 H:\DOCS\49769.TXT SAG PsN: JOYCE
8 

uments. 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. 

9 

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. 

10 

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 

22 

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.’’ 

40 

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 prefVerDate Nov 24 2008 14:37 Jun 25, 2009 Jkt 000000 PO 00000 Frm 00044 Fmt 6633 Sfmt 6633 H:\DOCS\49769.TXT SAG PsN: JOYCE
41 

erences 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 

66 

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. 

67 

[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 

77 

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. 

83 

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. 

84 

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 onefourth 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 hightech 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 opporVerDate Nov 24 2008 14:37 Jun 25, 2009 Jkt 000000 PO 00000 Frm 00108 Fmt 6633 Sfmt 6633 H:\DOCS\49769.TXT SAG PsN: JOYCE
105 

tunity 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 peoVerDate Nov 24 2008 14:37 Jun 25, 2009 Jkt 000000 PO 00000 Frm 00109 Fmt 6633 Sfmt 6633 H:\DOCS\49769.TXT SAG PsN: JOYCE
106 

ple’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? 

107 

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. 

108 

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 

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109 

ical 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 

110 

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, 

111 

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 

112 

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 

113 

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 

114 

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 

115 

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.] 

(117) 

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. 

118 

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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