U.S. GOVERNMENT PRINTING OFFICE

WASHINGTON : 

For sale by the Superintendent of Documents, U.S. Government Printing Office

Internet: bookstore.gpo.gov Phone: toll free (866) 512–1800; DC area (202) 512–1800

Fax: (202) 512–2104 Mail: Stop IDCC, Washington, DC 20402–0001

75–911 PDF 2012

S. HRG. 112–553 

EMPOWERING PATIENTS AND HONORING 

INDIVIDUALS’ CHOICES: LESSONS IN IMPROVING 

CARE FOR INDIVIDUALS WITH ADVANCED ILLNESS 

HEARING 

BEFORE THE

SPECIAL COMMITTEE ON AGING 

UNITED STATES SENATE 

ONE HUNDRED TWELFTH CONGRESS 

SECOND SESSION 

WASHINGTON, DC 

JUNE 13, 2012 

Serial No. 112–18 

Printed for the use of the Special Committee on Aging 

( 

Available via the World Wide Web: http://www.fdsys.gov 
(II) 

SPECIAL COMMITTEE ON AGING 

HERB KOHL, Wisconsin, Chairman 

RON WYDEN, Oregon 

BILL NELSON, Florida 

BOB CASEY, Pennsylvania 

CLAIRE MCCASKILL, Missouri 

SHELDON WHITEHOUSE, Rhode Island 

MARK UDALL, Colorado 

MICHAEL BENNET, Colorado 

KIRSTEN GILLIBRAND, New York 

JOE MANCHIN III, West Virginia 

RICHARD BLUMENTHAL, Connecticut 

BOB CORKER, Tennessee 

SUSAN COLLINS, Maine 

ORRIN HATCH, Utah 

MARK KIRK III, Illinois 

DEAN HELLER, Nevada 

JERRY MORAN, Kansas 

RONALD H. JOHNSON, Wisconsin 

RICHARD SHELBY, Alabama 

LINDSEY GRAHAM, South Carolina 

SAXBY CHAMBLISS, Georgia 

CHAD METZLER, Majority Staff Director 

MICHAEL BASSETT, Ranking Member Staff Director 
(III) 

CONTENTS 

Page 

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

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

Statement of Senator Susan Collins ...................................................................... 3 

Statement of Senator Joe Manchin ........................................................................ 5 

PANEL OF WITNESSES 

Statement of Vince Mor, Ph.D., Florence Pirce Grant Professor of Community 

Health, Warren Albert School of Medicine, Brown University, Providence, 

RI ........................................................................................................................... 6

Statement of Gail Austin Cooney, M.D., Associate Medical Director for Physician Quality and Performance Improvement at Hospice of Palm Beach 

County, West Palm Beach, FL ............................................................................ 9 

Statement of Karren Weichert, President and CEO, Midland Care Connection, 

Inc., Topeka, KS ................................................................................................... 11 

Statement of Albert Gutierrez, President and CEO, Saint Joseph Regional 

Medical Center, Mishawaka, IN ......................................................................... 14 

APPENDIX 

WITNESS STATEMENTS FOR THE RECORD

Vince Mor, Ph.D., Florence Pirce Grant Professor of Community Health, 

Warren Albert School of Medicine, Brown University, Providence, RI ........... 26 

Gail Austin Cooney, MD, Associate Medical Director for Physician Quality 

and Performance Improvement at Hospice of Palm Beach County, West 

Palm Beach, FL .................................................................................................... 34 

Karren Weichert, President and CEO, Midland Care Connection, Inc., Topeka, 

KS .......................................................................................................................... 37

Albert Gutierrez, President and CEO, Saint Joseph Regional Medical Center, 

Mishawaka, IN ..................................................................................................... 46 

RELEVANT ARTICLES SUBMITTED BY COMMITTEE MEMBERS

The Long Goodbye, Time Magazine, June 11, 2012 ............................................. 53 

Why Doctors Die Differently, The Wall Street Journal, February 25, 2012 ....... 63 

ADDITIONAL STATEMENTS SUBMITTED FOR THE RECORD

The Honorable Susan Collins (R–ME), Committee Member ................................ 64 

ADVault, Inc., Dallas, TX ....................................................................................... 66 

Hospice and Palliative Nurses Association, Pittsburgh, PA ................................ 70 

Human Rights Campaign, Washington, DC .......................................................... 72 

Services & Advocacy for Gay, Lesbian, Bisexual & Transgender Elders, New 

York, NY ............................................................................................................... 75 

(1) 

EMPOWERING PATIENTS AND HONORING 

INDIVIDUALS’ CHOICES: LESSONS 

IN IMPROVING CARE FOR INDIVIDUALS 

WITH ADVANCED ILLNESS 

WEDNESDAY, JUNE 13, 2012 

U.S. SENATE, 

SPECIAL COMMITTEE ON AGING, 

Washington, DC. 

The Committee met, pursuant to notice, at 2:03 p.m., in Room 

SD–562, Dirksen Senate Office Building, Hon. Herb Kohl, chairman of the committee, presiding. 

Present: Senators Kohl [presiding], Whitehouse, Collins, and 

Manchin. 

OPENING STATEMENT OF SENATOR HERB KOHL, CHAIRMAN 

The CHAIRMAN. Good afternoon to everybody. I would personally 

like to thank Senator Sheldon Whitehouse for holding today’s hearing. Senator Whitehouse is tackling a sensitive but very important 

issue today, and we thank him so much for that. 

We’re here to discuss care for individuals with advanced illnesses. With the rapidly growing number of older Americans who 

are living longer than ever, we’re going to face a continuing rise in 

the number of people suffering from chronic diseases, especially in 

their later years. These people deserve to have their wishes carried 

out when it comes to their healthcare at the end of life. But, as a 

recent article in the ‘‘Wall Street Journal’’ made clear, it’s important for people to understand that some living wills are better than 

others, and even if you have one, it’s possible that your wishes may 

not be followed. 

Many living wills are simply too vague or fail to cover unanticipated situations. If people are considering a living will, then they 

need to work out the details with the help of a qualified doctor and 

a loved one. 

In my State of Wisconsin we have excellent models of clear advance directives and health systems that adhere to patients’ wishes. One such model is Gunderson Lutheran Medical Center, in La 

Crosse. Their written testimony submitted for the record today 

states 96 percent of all adult residents of La Crosse County who 

died had some type of advanced care plan, and treatments were 

consistent with the patients’ wishes over 99 percent of the time. 

Imagine that. Models such as this need to be replicated throughout 

our country. It’s vital for patients, their families, and our overall 

healthcare system. 
2 

Today, our witnesses will highlight some of the best practices 

and discuss ways to improve our healthcare system, so that it can 

better serve people with advanced illnesses. As I already stated, an 

important part of this care is making sure that treatment decisions 

align with patients’ preferences and goals. Nothing should get in 

the way of providing comfort to people suffering from advanced illnesses. Our hope is that today we will discover some additional 

ways to promote better patient care. 

Once again, I’d like to thank Senator Whitehouse for his leadership on this issue, and at this time, I turn the hearing over to Senator Whitehouse. 

STATEMENT OF SENATOR SHELDON WHITEHOUSE 

Senator WHITEHOUSE [presiding]. Thank you, Chairman Kohl, for 

starting us off today with those very thoughtful remarks, and let 

me take this opportunity to thank you for your leadership of the 

Aging Committee and for the wonderful work you’ve done to protect our seniors from fraud and abuse, to make sure that Social Security is, in fact, secure, to address long-term care, and, of course, 

to address the question of end-of-life care, where your State had 

such a leadership role. 

I’ll do my, like, book tour moment here, and point out that 

there’s a wonderful book called, ‘‘Having Your Own Say,’’ that has 

come out of the Gunderson Health system, and a number of my colleagues will be doing a Washington conference around that book 

and around this issue with the coalition to transform advanced 

care, which is a wide group of industry and other supporters of 

what we need to do here. 

Like many of the folks who are here, this hearing is important 

to me on both professional and personal levels. I’ve been working 

on adding dignity and affirming choice in end-of-life care back since 

I was attorney general in Rhode Island, working then with Dr. 

Mor’s colleague, Joan Teno, who brought to our attention early on 

that the families of people who died in Rhode Island reported more 

often than not that they died in pain, and of the family members 

who had reported that their loved one died in pain, they reported 

more often than not that the level of pain was severe or excruciating. And so, that gave us an important opening into trying to 

make sure that people were protected from unnecessary pain. 

The groups that we started working with, AARP, religious leaders, the medical society, Brown University, still gather, and I 

should salute them for just this week getting the, I’ll get the name 

right, Medical Orders for Life Sustaining Treatment Law passed 

and signed into law by, I guess, your former colleague, we didn’t 

overlap, now Governor Chafee. He signed that law into effect on 

Monday, this week, June 11th. And that’s a victory for that group. 

Personally, I have had the experience of loved ones dying with 

great dignity, and without pain, and in a manner consistent with 

their own wishes and desires. And although grief always casts a 

shadow, the shadow of that grief, I think, is lightened by the experience being one that is dignified, humane, desired in its means, 

and pain free. 

I have also had the experience of loved ones dying with treatment being administered to them against their will, and not only 
3 

is it a tragedy from the point of view of this person, who I loved 

very much, but it was also a lingering burden that added to the 

shadow of grief, that we were unsuccessful in securing her wishes, 

and that the machinery of healthcare took over, trampled what she 

wanted. This was a very, very dignified, proud, and independent 

woman, and she ended up dying with a ventilator tube down her 

throat. And we had been asked over and over again, don’t let that 

happen. And so, it adds to the shadow of grief when people don’t 

get their wishes maintained. 

So, it’s really important, I think, that we take the time in this 

hearing to take a look at these issues to do what we can to make 

sure that the system is one that is akin to what was described in 

a 1997 report of the Institute of Medicine, a human care system, 

they called it. The quote, ‘‘People can trust to serve them well as 

they die, even if their needs and beliefs call for a departure from 

typical practices. It honors and protects those who are dying, conveys by word and action that dignity resides in people and helps 

people to preserve their integrity, while coping with unavoidable 

physical insults and losses.’’ 

Unfortunately, our system for delivering care to those with advanced and serious illness regularly fails to meet that standard. 

The Dartmouth Atlas of Healthcare shows that in the last 6 

months of life, chronically ill Medicare beneficiaries in some regions of the country spent more than 3 times as many days in the 

hospital and more than 10 times as many days in an intensive care 

unit as patients in other regions. This regional variation overrides 

patient preferences about how to manage their care. 

As Americans live longer, we are increasingly suffering from a 

greater burden of chronic diseases. More than three-quarters of 

Americans 65 and older have at least one chronic disease, and as 

the baby-boomer generation ages, the percentage of the U.S. population age 65 and older is projected to increase from 11 percent of 

the population now, to 16 percent by 2020, and almost 20 percent, 

almost 1 in 5, by 2030. So, our physicians, our nurses, our clinicians have to be properly trained to not only conduct the medical 

miracles that we see every day in our wonderful medical profession, but also be trained to have conversations about care options, 

and about care goals, and about ensuring that patients can make 

their wishes known, and can have their wishes honored. 

So, I’m delighted that we have the witnesses here today. I’ll introduce them specifically later on. But, Senator Collins is here. I 

know, from previous hearings, how deeply she feels about this. I’m 

honored that she has joined us, and I’d like to invite her to say a 

few words at the beginning of the hearing. 

STATEMENT OF SENATOR SUSAN COLLINS 

Senator COLLINS. Thank you very much. First, Senator 

Whitehouse, let me join you in commending our chairman for his 

leadership. I know there will be subsequent hearings before he retires from the Senate, but I don’t want to let this opportunity pass 

by without thanking him for his leadership of this committee and 

all the work that he has done. 

And I want to thank you, Senator Whitehouse, for your interest 

in this hearing to look at best-practice models of hospice and pallia-
4 

tive care for patients with advanced serious illnesses and complex 

care needs. 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 their needs. 

Clearly, there is much 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 end. 

Fortunately, also, there are some wonderful models of coordinated patient-centered care for individuals with advanced illness. 

In his cover story in this week’s ‘‘Time’’ Magazine, Joe Klein writes 

about his own experience during his parents’ final days. His mother and father were patients in The Fairways, a Pennsylvania nursing facility in the Geisinger Healthcare system. Both parents had 

multiple and complex health conditions, including dementia. Prior 

to their admission to The Fairways, Mr. Klein said that there was 

no coordination among the flotilla of physicians involved in their 

care. All of this changed at Fairways. He was consulted about 

every development or adjustment of medication. 

While he still characterized his parents’ decline as horrific, he 

wrote that he no longer felt so powerless, guilty, and frustrated. 

He, instead, was part of a team that made their passage as comfortable as possible. And, Mr. Chairman, I would ask unanimous 

consent to include Mr. Klein’s article in the hearing record, since 

it’s so on point. 

Senator WHITEHOUSE. Without objection. 

Senator COLLINS. On a more personal level, just within the past 

few months, a very close friend of mine was a patient in the 

Gosnell Memorial Hospice House in southern Maine. I visited her 

twice there, and I had the opportunity to see firsthand what compassionate, high-quality, and seamlessly coordinated care can mean 

for patients with advanced illness and their family. 

In most cases, hospice care enables dying patients to remain in 

the comfort of their homes, free from unnecessary pain and surrounded by family and friends. The Gosnell Memorial Hospice 

House, in Scarborough, Maine, provides an alternative for those individuals for whom care in their home is no longer possible or no 

longer sufficient. I just wish we had more hospice houses throughout the State of Maine and throughout this country. 

This hospice house provides a comfortable homelike setting for 

hospice patients and their family in which they can receive advanced patient-centered care. From pain and symptom management, to psychological and spiritual support, to actually delivering 

longed-for scones to accompany my friend’s tea, the care at Gosnell 

Memorial Hospice House was always centered on the patients’ 

needs and desires, and it is first rate. And I’ve seen what a tremendous difference it has made and made for my friend, and for other 

patients and their families. 

Again, thank you for having this hearing, and I know this issue 

is a personal passion for my colleague from Rhode Island, and it 
5 

is for me, also. This is an issue that I, too, have worked for many 

years on. 

Finally, let me just end by saying the last area where we should 

be cutting Medicare reimbursements is for hospice and home-based 

care. That is such a poor decision, and I hope that’s something that 

can unite us. 

Thank you. 

Senator WHITEHOUSE. Thank you, Senator Collins, and I can recall sitting in this committee and hearing you speak on the subject, 

and having the hair on my arms stand up, you spoke so eloquently 

about it. I’m very glad that you’re here and your passion for this 

is, let’s just say I’m a newcomer compared to you, and I appreciate 

what you said. 

I would like to add a document of my own to the record, which 

is the ‘‘Wall Street Journal’’ article from February called, ‘‘Why 

Doctors Die Differently,’’ which was a very interesting article showing how doctors who actually know better than anybody else how 

the system treats people at end of life so often make the decision 

that they’re going to opt out of that particular treadmill and go out 

on their own terms and with their dignity intact. So, without objection, that will also be made part of the record. 

And we’ve been joined by my distinguished colleague from West 

Virginia, Joe Manchin, and I would invite Senator Manchin to say 

a few words. 

STATEMENT OF SENATOR JOE MANCHIN 

Senator MANCHIN. Thank you, Senator Whitehouse. I appreciate 

very much your concern and your interest in having this hearing. 

And Chairman Kohl, thank you, again, for your courtesies as always. 

In West Virginia, we have the second oldest State in the nation, 

percentage-wise, per capita, and so it’s very near and dear to all 

of us. And we have one of the largest homeownerships. So, independent living. Our amber is Montani Semper Liberi. Mountaineers are always free, and trust me, they truly take that to heart, 

especially as we grow older. 

When I was governor, our biggest concern we had is how do we 

allow people to live in the dignity and respect that they’ve earned 

all their life. I’ve watched so many of my friends’ family members, 

their parents and their grandparents, their aunts or uncles that 

have gone into a nursing home, and truly have given up, because 

they’ve taken everything away from them. They took all their assets away and left them with nothing. And these were people that 

were proud making decisions all their life, helping their family, and 

all of a sudden everything was taken away. So, we thought there 

had to be a better way. 

When I became governor, from 2005 to 2010, we expanded more 

services for in-home care, assisted, to help the people live, assistance, that could live independently. We spent more money than 

ever in the history of our State, and I think on a percentage, more 

than any other State in the nation. And we have more people living 

at home than ever before, and people that might, otherwise, be institutionalized. 
6 

So, that being said, I know this is a very tough decision. It’s one 

that we keep putting off, especially those of us who don’t want to 

face the inevitable that we might have to make these decisions. I 

have a few questions we’ll go into later. I just want to make the 

statement that I appreciate your commitment towards helping all 

of us live with a little bit more dignity and respect as we grow 

older, but how do that as public policy. 

And I know the States have an awful lot of involvement, if they 

want to. I have been committed that you base your priorities 

around your values, and if you have the values of taking care of 

your youth, taking care of their experienced citizens as they grow 

older, and the veterans who have given you the freedoms to enjoy 

all these things, then you’ll be fine. And you can’t do everything, 

I know that, but this is a value we hold very near and dear in West 

Virginia. I’m so pleased to so many of you involved in the same 

concerns that we have, and helping us is going to be tremendous. 

So, I’ll have some questions later. I thank you again, and I’m 

very proud of my State, and the things that we’ve done. 

Senator WHITEHOUSE. Thank you, Senator. 

Now, our first witness this afternoon is from my home State. 

He’s Dr. Vince Mor. He’s a Professor of Community Health at the 

Brown University School of Medicine. Dr. Mor has been on the faculty of Brown for, believe it or not, over 30 years. I guess he started young. He has served in a number of positions there, including 

as director of the Center for Gerontology and Healthcare Research, 

and chair of the Department of Community Health. 

He’s been principal investigator for nearly 30 different NIH research grants. He’s been awarded grants from the Robert Wood 

Foundation and the Commonwealth Fund, as well as HCFA and 

the Office of the Assistant Secretary for Planning and Evaluation. 

His research focuses on how different models of care influence 

healthcare use and the healthcare outcomes, particularly for frail 

and chronically ill individuals. He’s also evaluated policies in aging 

and long-term care, including Medicare funding of Hospice, an 

issue Senator Collins mentioned, patient outcomes in nursing 

homes, and a national study of residential care facilities. 

Dr. Mor, I extend you a warm welcome down to Washington, 

D.C., and I look forward to hearing your testimony. 

STATEMENT OF VINCE MOR, PH.D., FLORENCE PIRCE GRANT 

PROFESSOR OF COMMUNITY HEALTH, WARREN ALBERT 

SCHOOL OF MEDICINE, BROWN UNIVERSITY, PROVIDENCE, 

RI 

Dr. MOR. Thank you very much. Good afternoon, Senators. I 

want to thank you for the honor of speaking with you today regarding the critical needs of people who are dying and their families 

here in America. Actually, Senator Kohl, I could probably put everything away, because you prefaced most of my comments, as did 

Senator Collins. 

About 2.4 million Americans die each year, and for them dying 

is a critical event. Obviously, in the life of a family, that without 

appropriate medical care and support can result not only in pain 

and suffering for the dying person, but post-traumatic stress and 

complicated grief for survivors, as Senator Whitehouse indicated. 
7 

My charge today is to talk about the context of dying in America. 

Over the past 3 decades we’ve made great progress in the U.S., 

with the expansion of hospice services and the emerging subspecialty of hospice and palliative medicine, but very important 

work remains to be done. 

Our healthcare system is still a long way from ensuring that 

medical care at the end of life is based on the patients’ fully informed preferences and values. Successes in public health, and 

medical treatments, and chronic disease have resulted in tremendous increases in longevity. Over the past century the average 

number of years a 75-year-old can expect to live ticked up just a 

bit ever year. So, increasingly we encounter centenarians, the fastest growing part of the population of those 85 and over, and the 

older population is dying of diseases that a century ago were extremely rare. 

Dementia, despite not being recognized a terminal illness several 

years ago, is now the sixth leading cause of death in the United 

States, and 1 in 8 Americans 65 and over is afflicted with it. All 

these patients have a different dying trajectory than patients with 

cancer, for example. They have the same needs for symptom management. Pneumonia in a patient with dementia results in the 

same level of shortness of breath as it does in a cancer patient. 

So, based on our research and that of others, the place of care 

and the geographic region, you mentioned Wisconsin, greatly influence how they die and where they die. In a study we conducted of 

survivors of individuals who had been in a nursing home in their 

last weeks of life, we found that 1 in 3 reported that their loved 

ones experienced inadequate pain control, they did not have 

enough emotional support, and that they weren’t treated with dignity. On the other hand, among those who died at home and with 

hospice services, nearly 71 percent rated the care of their loved one 

as excellent. 

Since more and more Americans are spending part of their last 

weeks of life in a nursing home, this has implications that go far 

beyond the people who live in nursing homes on a long-term basis, 

because they’re moving through these facilities. Sadly, too often, 

dying persons and their families are lost in transition between 

acute care and nursing home. With funding from the National Institute on Aging, I have worked on a multidisciplinary research 

team that includes Dr. Joan Teno, to describe the pattern of transitions at the end of life amongst nursing home residents with advanced cognitive and functional impairment. 

We created an index of burdensome transition and found that 

there is a huge geographic variation in the likelihood that people 

experience these burdens and transitions in the last month of life. 

We compared Grand Junction, Colorado, and McAllen, Texas. And 

if you were in Grand Junction, Colorado, only 13 percent of the 

dying patients had one of these burdensome transitions in the last 

month, whereas more than twice as many in McAllen, Texas, had 

them. In Wisconsin, it’s almost as low as in Grand Junction. High 

rates of transition from one medical care setting to another result 

in medical errors, problematic care coordination, duplication of 

services, and relocation stress for these frail older persons. 
8 

So, what I’d like to do is make a few recommendations. First, it 

must be clear that a single healthcare provider or healthcare system should be accountable for an episode of care. We should no 

longer tolerate the sentiment that some have expressed, ‘‘out of my 

hospital, no longer my responsibility’’. Hospitals, nursing homes, 

and other healthcare providers must become partners in order to 

decrease inappropriate healthcare transitions, particularly in the 

last month of life. 

Financial incentives, whether it’s bundling payments, or some 

other mechanism, have got to be aligned to make this possible. 

Without financial and clinical accountability, dying patients and 

their families will continue to be lost in transition. If we do this, 

we have to make sure that incentives to go in one direction aren’t 

countermanded by having other incentives going in the other direction of denying care. So, we have to ensure that managed care or 

other organizations are held accountable for providing care consistent with patients’ preferences. 

Currently, in 2012, Medicare is the predominant payer for older 

populations. The fee-for-service system that we have in place now, 

which made sense in the 1960s when we designed it, to increase 

access for older people who didn’t have such care, doesn’t make 

sense now. Fee-for-service payments, create separate silos for funding each type of provider such that they are only concerned with 

what goes on inside their walls. We believe it’s essential to move 

the current system towards increased accountability, whether it’s 

managed care or accountable care, something has to be done to 

bring these together. Otherwise, I worry that frail elderly individuals will continue to be transferred from one provider to another, 

like so much flotsam and jetsam. 

Thank you very much for your time. 

Senator WHITEHOUSE. Thank you, Dr. Mor. 

Our next witness is Dr. Gail Austin Cooney. She is the Associate 

Medical Director for Physician Quality and Performance Improvement at Hospice of Palm Beach County, in Florida. In 2005, Dr. 

Cooney was diagnosed with metastatic ovarian cancer, which recurred in 2010. Both times, Dr. Cooney received curative and palliative care concurrently. Today, her cancer is, again, in remission. 

Hospice of Palm Beach County is a non-profit hospice facility 

that provides care for approximately 1,200 patients daily, in a 

range of settings, including private homes, hospitals, nursing facilities, and assisted living facilities. 

In 2009 to 2010, Dr. Cooney was president of the American Academy of Hospice and Palliative Medicine. In 2012, she received that 

organization’s Josephina D. Magno Distinguished Hospice Physician award. 

Dr. Cooney received her medical degree from the Mayo Medical 

School, completed residencies in internal medicine and neurology at 

Emory University, and completed a neuro-oncology fellowship at 

Memorial Sloan Kettering Cancer Center in New York. 

Dr. Cooney, we are already wowed by you and look forward to 

hearing your testimony. 

[Laughter.] 
9 

STATEMENT OF GAIL AUSTIN COONEY, M.D., ASSOCIATE MEDICAL DIRECTOR FOR PHYSICIAN QUALITY AND PERFORMANCE DEVELOPMENT, HOSPICE OF PALM BEACH COUNTY, 

WEST PALM BEACH, FL 

Dr. COONEY. Senator Kohl, Senator Whitehouse, and other distinguished members of the committee, thank you so much for having me here to speak today. 

As was discussed I spent most of my professional career in the 

field of hospice and palliative medicine. And Senator Collins, when 

you mentioned patient-centered care, it made me realize that that 

is why I have been so happy in my field, because that’s what I 

found there. 

But I’m going to mostly talk today about my personal story, because a few years back I had an unusual meeting of my personal 

and professional lives, and I know that I would not be here today 

to speak to you without the support of my palliative care team. 

I’d like to give you a definition of palliative care, because it’s 

often very misunderstood, both by the general public and by 

healthcare providers. Palliative care is specialized medical care for 

people with serious illness. This type of care is focused on providing 

patients with relief from the symptoms, pain, and stress of a serious illness, whatever the diagnosis. The goal is to improve quality 

of life for both the patient and the family. 

Palliative care is provided by a team of doctors, nurses, and other 

specialists who work along with the patient’s other doctor, to provide an extra layer of support. Palliative care is appropriate at any 

age, with any diagnosis, at any stage of the illness, and can be provided along with curative care. For me, the key messages in my 

story are that focus on quality of life, while pursuing curative 

treatments, because that’s what happened to me. 

In 2008, I was actually developing a palliative oncology program 

in West Palm Beach, Florida, where I live. Things were going well. 

We were due to open in August of 2008. But on July 27th, I walked 

into the office of one of the oncologists that I was working with— 

you know, I’m a doctor, I didn’t make a doctor’s appointment—I 

just walked into the office, and I said, ‘‘People have told me that 

I’m bloated.’’ And she looked at me and said, ‘‘Not bloated.’’ I had 

an ultrasound. I had a CAT scan. And by that afternoon, I had 

been diagnosed with stage IIIC ovarian cancer. That’s the stage at 

which most women are diagnosed with ovarian cancer, because it 

is almost always diagnosed late. But I don’t have time to tell you 

all about that today. 

Two days later, I had surgery. It is difficult surgery, because of 

the way ovarian cancer spreads. It is like you take a black velvet 

painting and throw a carton of yogurt at it, and then go in and try 

to clean it up. The surgeon does the best he can, but there’s still 

stuff stuck in between all of those ‘‘little black velvet fibers.’’ And 

so the second part of treatment, after the surgery, is 

intraperitoneal chemotherapy. And what that means is that they 

take some of their most toxic drugs and dump them right into your 

belly, with the idea being that it will get right up against those 

tumor cells, up in the black velvet, and be able to get rid of them. 

It’s very toxic therapy. Only about 40 percent of women who begin 

a course of intraperiteneal therapy are able to complete it, because 
10 

of the toxicities. But of those women that do complete the therapy, 

a third live over a year. And for ovarian cancer, that is good. 

I decided I wanted to be one of those third. But if I was going 

to do it, I had to make sure that I could tolerate the side effects 

of the treatment, and that’s where I knew to ask for the help of 

a palliative care team. And so I actually became one of the first patients at the palliative program I had just been setting up. It’s a 

strange life. 

My team worked on the nausea and the vomiting; the chemotherapy is very toxic that way. I used medications. I had acupuncture. The other really difficult problem is the communication between family members. I can talk to my patients about advanced 

illnesses. But, talking to my husband and my children, I needed 

guidance. I worked with a counselor on those issues. And I hung 

in there. On Christmas Eve 2008, I had my last treatment. 

Two months later, I was in remission. I started feeling better. My 

hair grew back. I even started working part time. But even though 

I was feeling well two years later, in 2010, the cancer came back. 

I had no symptoms this time, but it was back. And the choices for 

treatment this time were even more complicated. On initial diagnosis, it is somewhat straightforward what you do first to treat 

cancer. For recurrences, they often don’t have as much data. And 

even though I speak doctor pretty well, pretty fluently, I needed 

somebody to help me talk through what my goals of care were, as 

I looked at a whole new range of toxic therapies. Again, I needed 

my palliative care team. 

I ultimately had chemotherapy. After that, I had surgery at M.D. 

Anderson Cancer Center, in Houston, Texas, where I also accessed 

their palliative care team. It was a tough year. But, I’m happy to 

say that once again my disease is in remission, and I have been 

left with a real passion to share my story, because I think it is so 

important that people understand the benefits that palliative care 

can have when it’s used from the time of diagnosis, because for 

many serious illnesses, the treatments are difficult. And for me, my 

palliative care team helped me to make the side effects a priority, 

They made sure that treatment of side effects was a priority. They 

helped me to talk about the issues that otherwise would have just 

been underlying stressors that would have made it more difficult 

to heal. I really want others to have access to this kind of care, because as difficult as my experience was, I had a lot of things going 

on my side. 

I have a husband and a family who love me and stood by me. 

I have good health insurance, and I didn’t have to bankrupt my 

family in order to pay for my medical care. I had access to superb 

palliative care and I knew to ask for it; because even where I was, 

in some really good institutions, I had to ask for palliative care, 

and most people don’t know to ask. 

People with serious illness, me now, and someday all of us, we 

need your help to make this kind of care, this added layer of support, available to all Americans, so that they can have an experience with serious illness that is as healing and as hopeful as mine 

has been. 

Thank you so much for listening to my story. 

Senator WHITEHOUSE. Thank you so much, Dr. Cooney. 
11 

Our third witness is Karren Weichert. She’s the President and 

Chief Executive Officer of Midland Care Connection, in Topeka, 

Kansas. Over two decades, Ms. Weichert has transformed Midland 

Care from a volunteer hospice program into an integrated care delivery system that offers services across the continuum of care. 

Under her leadership, Midland Care opened the first hospice inpatient unit, the first hospice-sponsored adult care facility, and the 

first hospice-sponsored PACE program in Kansas. 

In addition to her work at Midland Care, Dr. Weichert has 

served two terms as national director for the National Hospice and 

Palliative Care Organization, and currently serves on their governance committee. She also works with Leading Age, as a member of 

the Hospice Home Health Taskforce, and is a board member of the 

National PACE Association, and chairperson of their Public Policy 

Committee. 

Ms. Weichert, I appreciate coming in today. We’re delighted to 

hear your testimony. 

STATEMENT OF KARREN WEICHERT, PRESIDENT AND CEO, 

MIDLAND CARE CONNECTION, INC., TOPEKA, KS 

Ms. WEICHERT. Thank you. Chairman Kohl, Senator Whitehouse, 

and members of the committee, I am really delighted and quite 

honored to be with you today. I am Karren Weichert, with Midland 

Care Connection, Topeka, Kansas. And as the Senator said, we 

started with the hospice over 30 years ago, and now have developed into a full continuum of care services to address the needs of 

those with advanced illnesses. 

Our continuum today includes not only hospice inpatient care, as 

well as homecare, but it also includes adult daycare and residential 

care, home health, home support, a palliative care program, and 

PACE, Program of All Inclusive Care for the elderly. 

I want to tell you a story about a gentleman who was in our care 

a couple of years ago, Denzel Ekey. And Denzel came to us as a 

78-year old man with Alzheimer’s disease and myasthenia gravis, 

which affects the muscles in his arms and legs, and eventually his 

throat. 

He was cared for by his wife, Mary, in the home, and she was 

doing an outstanding job of that, but she needed some help. And 

so she invited us into help with his personal care, bathing and 

such. We did that for a short time, and then he began to coming 

to our adult daycare. As his care needs continued to increase, and 

it began to be more difficult for her to provide that care, he was 

enrolled in our PACE program, whereby we could wrap services 

around him, coordinating not only all of his medical care, but all 

of the supportive care needs that he had while remaining in his 

own home. 

Eventually, because of his disease process, and some of the 

things that his wife encountered, he had to move into our residential center, and we were delighted that we had that option for him, 

because there he was still connected with his PACE team, the residential team was there to provide him that 24/7 care that he needed to maintain, and then at some point, when the PACE team recognized that he actually was in the last few months of his life, they 

actually invited the hospice colleagues to be involved in his care as 
12 

well, because there were some complexities to his care that they 

needed assistance with the symptom management of his disease 

process. 

The hospice team also lent a hand to Mary, and she was a devoted wife, and she needed help just dealing with the fact that she 

was going to be losing this man that she had loved all these years. 

She came every day to the residential center and sat by his side. 

And, in fact, she was with him on that last day, Christmas Day of 

2010, and he died. 

I tell this story, because Denzel was so near and dear to us as 

an organization, because he sat on our board over 25 years ago 

when we were just a hospice, when we had a dream to develop into 

something more, and he was one of those people with courage and 

conviction that stepped out and said, yes, I think we need to do 

this. We need to make some decisions that can move our organization forward and serve more people. And we did that. Little did he 

know that we would one day be serving him. So, we were honored 

that we had that opportunity. 

Denzel is also significant, because he’s one of those over age 65 

afflicted with Alzheimer’s that we’ve heard. And Alzheimer’s today 

is one of the top 10 diseases in our country, but it is one for which 

there is no prevention, there is no cure, and there is no way to really successfully prevent the progression of the disease. So, it’s very 

significant that we should talk about Denzel today. 

I also want to talk about how does all of this care happen. I believe that as we look ahead at how we might be forging a new way 

to provide care, and we’ve heard some really poignant and significant statistics today about how we can provide care to those with 

advanced care illness. I think it’s important to remember that it 

needs to be provider based, and by provider based, I mean that it 

needs to be an entity who is responsible not only to coordinate the 

care and to manage the care, but to provide the care. 

It also needs to be interdisciplinary in nature. It is extremely important that the whole team be involved in the care of a significant 

illness, because it is not just a physical process. It affects the whole 

person, and the interdisciplinary team comes together, as professionals, to work on all of the different elements that might be affecting the patient through this process. 

It also needs to take into account that one person has the disease, but the whole family is going through this process, and we 

certainly need to build into our system ways to support those caregivers, because they are so critical to the effective care of individuals who want to remain in their home. 

And lastly, I think that those organizations need to have financial responsibility and be accountable for the care that they deliver. 

We have in this country two programs, both PACE and hospice, 

who have been doing this for a number of decades now, and they 

are capitated systems. They’re given a set amount of money, and 

then they are required to provide all of the care that the individuals entrust to them must have. And they do, and they do it quite 

effectively, and they do it with a high satisfaction rate throughout 

our country. 

Today, we are challenged with silos. Silos in our healthcare system, providers not communicating very well with each other, and 
13 

patients caught up in those silos. We also have silos in our regulatory entities, and we have regulations that are quite antiquated, 

and not effective in today’s system, because today we have ways to 

communicate that we didn’t have 20 years ago, when many of those 

regulations were developed. 

We have electronic medical records. We have real-time reports 

about what’s going on with our patients. Much more effective ways 

to serve them, and yet, many times, we are mired down in all of 

the regulatory things that we have to meet. If we are to serve people effectively, we need to eliminate some of those silos and mesh 

those together, so that our focus can be really on delivering that 

care. 

I think in this country these two programs have also been effective for three reasons. First of all, because they both developed 

around helping patients to stay in their home, stay in their home, 

where they want to be. They also developed with those patients as 

a part and as a center of the care, involving them in the discussions about what was happening to them, educating them about 

the process of their disease, and having them have input into what 

was going to happen. 

They’ve also utilized that interdisciplinary team, which is so important, because we understand in hospice and in PACE that suffering is not just physical pain. It happens to us in totality, and 

so we have to learn to serve that total person. And we’ve also 

learned that, I think the reason that hospice and PACE have been 

so effective, and probably one of the key things that have cut down 

on ER visits and unnecessary hospitalizations is because they are 

responsive. They are available 24/7. They answer that telephone. 

They calm those fears. They go and sit by the bedside. And they 

make those home visits at 2:00 o’clock in the morning, either the 

physician, or the nurse, someone is going out there. And that 

avoids those unnecessary stays in the hospital. 

I will tell you, we don’t like people to go to the hospital. A couple 

of reasons. We’re financially responsible for that. That’s one of 

them. But, you know what, it goes far beyond that. Hospitals are 

not great places to be. If you’ve ever been to one of them, there’s 

a lot of sick people there, and we have a very frail population that 

we then are exposing to a lot of other things. We don’t want them 

to go to the hospital. And it’s very disorienting. We want them to 

be at home, if at all possible. 

I encourage this committee and Congress to use these programs 

as the models. We have a lot of new innovative programs being 

talked about out there today, but we’ve got two programs in this 

country that have been around, that have been effective, and are 

underutilized. And I would submit that we need to build on that 

which we know is effective and that which we know has those components that people are asking for today. 

I appreciate the opportunity to be with you today. I think that 

we have a big charge ahead of us to develop a program and in a 

healthcare system that’s going to serve people with advanced illness. It needs to be seamless. It needs to be coordinated. And it 

needs to have the patient at the center of the care. 

Thank you. 
14 

Senator WHITEHOUSE. Thank you. Well, we appreciate the opportunity of you sharing your experience with us. So, thank you very 

much, Ms. Weichert. 

Our final witness is Albert Gutierrez. He’s the president and 

CEO of Saint Joseph Regional Medical Center, in Northern Central 

Indiana. Mr. Gutierrez joined Saint Joseph in 2010. It’s a multihospital, non-profit healthcare system that includes acute care hospitals, a rehabilitation center, 20 in-network physician practices, 

and several community health centers. It is a ministry organization 

of the fourth largest Catholic healthcare system in the country, 

Trinity Health. 

Saint Joseph has been recognized as one of the top healthcare 

systems in the country, having been named one of the top 15 hospital systems in the nation by Thomas Reuters. This year ‘‘Modern 

Healthcare’’ magazine named Mr. Gutierrez one of the country’s 

top 25 minority executives. Prior to joining Saint Joseph, Mr. 

Gutierrez was president and CEO of Shore Memorial Hospital, in 

New Jersey, where he was employed for 25 years. 

Mr. Gutierrez earned his bachelor’s degree from Thomas Edison 

State College and an executive MBA from Saint Joseph’s University. Me. Gutierrez, we are delighted you’re here. Please proceed 

with your testimony. 

STATEMENT OF ALBERT GUTIERREZ, PRESIDENT AND CEO, 

SAINT JOSEPH REGIONAL MEDICAL CENTER, MISHAWAKA, IN 

Mr. GUTIERREZ. Thank you very much, Senator. Distinguished 

members of the committee, colleagues in healthcare, members of 

the public, and my fellow panelists, for the purposes of these proceedings, my perspective is one of a healthcare executive. While we 

have angels in the architecture, saving our patients in hospitals, 

I’m the direct intermediary to the funding sources and the Federal 

Government. 

We believe that there are specific structural elements related to 

empowering patients and honoring individual decisions in care. The 

first prescription is a prescription of hope for the suffering. Part of 

the wide variation in treatment modalities for suffering and its related expressions is the wide variability in individual’s tolerance to 

suffering. The tolerance of the patient, but also the tolerance of the 

loved ones who are watching the person suffer. 

Suffering occurs when one is deprived of clinical and emotional 

support. When we observe suffering in another human being, God 

gives us all the remarkable reflexive response to preserve life. I’m 

sure the committee has witnessed this behavior in the selfless heroism of our soldiers on the battlefield and the individuals who 

rushed to help those who are injured or afraid at Ground Zero, 

among innumerable other examples. This instinct to help a fellow 

human being is remarkable. Countless times every day it occurs in 

our healthcare facilities. This natural instinct to help and heal 

arises in compassionate caregivers who receive the suffering at our 

doors. 

Unfortunately, in pursuit of a noble goal, relief of suffering, we 

frequently offer ineffective, costly, and painful procedures, sometimes to the detriment of the economic stability of our own institutions and the economic instability of our country. We actually know 
15 

what patients want in advanced illness. They want us to minimize 

their pain, reduce the burden on their families, and give them some 

control over what is happening. 

Caring for the body, mind, and spirit of every person we touch 

is core to our mission, and is embedded in the walls of every health 

system within Trinity Health. As a ministry of the Catholic 

Church, we believe that every human life is worth living. Palliative 

care reflects our commitment to respecting the dignity of every 

human person. We believe palliative care to be a prescription of 

hope for suffering. 

So, that being said, what is a prescription of hope for society? 

Good medicine is ethical medicine, and good medicine yields highquality, cost-effective outcomes. What is truly amazing about palliative care is that while it alleviates suffering for the patient and 

family, it does improve the quality of care and reduce costs. We 

know that the extensive use of healthcare resources does not enhance the quality of life at the end of these precious lifetimes. Patients should know they have a choice. They have a right to forego 

costly, burdensome, extraordinary, or disproportionate interventions. 

So, what happens? In order for a patient to make sound decisions 

within those parameters they must be engaged in the conversation. 

Senator Whitehouse, as you mentioned earlier, when we have 

failed the request of patients, what is it that has occurred? I can 

only articulate my conversation with my father, who loved three 

things: His family, his God, and the New York Yankees, who had 

a son who is the president of a healthcare system, who had access 

to some of the best physicians and treatment modalities in the 

world. And he was very specific to me. He said, ‘‘Son, I’m finished. 

I’ve done everything that I’ve wanted to do in life. Do not use any 

of your abilities and skills to save my life. I am ready.’’ So, we sat 

down and we documented the event, and we put the information, 

and I gave it to my parents, and it was all set. 

My father died in my sister’s arms, but still I get the call from 

my sister, as the ambulance is rushing to the house, ‘‘Where are 

the documents?’’ And we could talk about solutions for that a little 

bit later. But, in order for a patient to make sound decisions within 

those parameters, they must be engaged in that conversation. 

As a faith-based institution, we also believe in the prescription 

for hope for each precious life. At the core of our prescription for 

hope is establishing that conversation and making sure that we engage the role of our faith-based agendas as we all see them as individuals. It is even made more difficult when people have no hope 

and have no particular perspective on faith, and still, health systems need to be a part of that conversation. 

At our facility, a 60-year-old man who had suffered a massive 

stroke showed up alone at our emergency room. After CAT scans 

and other examinations, the doctors agreed that that massive 

stroke was so damaging that he would not recover. Someone called 

the only number on his cell phone contact list. It said, ‘‘Boss.’’ And 

there were no other contacts. Our legal staff exerted every effort 

to locate next of kin, even getting permission to search his apartment for an address book, to no avail. 
16 

The doctors had determined that the curative line of care was 

not possible, and his boss was not willing to take the responsibility 

of serving as his guardian. We convened our ethics conference, and 

based upon our proceedings, we brought our recommendation to the 

courts, and a judge appointed a guardian. 

After extensive discussion, the guardian and the doctors clearly 

understood the medical choices. And in the best interest of the patient, extraordinary interventions were ceased and he was moved 

to hospice care. 

There, the guardian visited him on a regular basis. The one documentation of his wishes that we did find was he wanted to identify 

himself as an organ donor. Saint Joseph’s Regional Medical Center, 

upon his passing, met his wishes, paid his funeral expenses, and 

had him buried in a local cemetery. The patient died with dignity, 

with his desires being met. 

So, in light of my closing recommendations, as a Catholic institution, we are committed to caring for every person who comes 

through our doors and to make sure that that commitment is sustainable. We have long encouraged these conversations. Going back 

to the Civil War, the Sisters of the Holy Cross, in South Bend, took 

care of the injured and dying on both sides of the armed conflict. 

So, therefore, first, we need to ensure that palliative care programs 

and providers are in place across our country, and are well funded. 

Second, we need to shine a light into end-of-life care as a societal 

issue to be addressed. No longer should it remain in the shadows. 

It’s no longer enough just to ask if there is an advance directive. 

It’s more for everyone to understand what’s in the directive. 

To that end, recently, our community needs assessment identified a very simple tool. It’s called ICE, in case of emergency. And 

where do you find ice? In a refrigerator. So, I’ve learned with discussions with every family member to put our documents in a tube 

and put them in the refrigerator, and put a symbol on the door. 

And that’s part of the deployment that we’ll be having in our particular community over the next year. Too long has our country 

shied away from these difficult conversations. 

Third, we need to establish the guarantee that no one dies alone. 

Just as we saw with the end of life care given to a stranger, no 

one should face that end of life alone. 

My last directive comes to us as a people from a letter of his Holiness, Pope John Paul, to the elderly in 1999. A letter that should 

be given to every senior in the country. That’s pretty specific. And 

Pope John closes in a way that I should close today. And he writes, 

‘‘And when the moment our definitive passage comes, grant that 

we may face it with serenity, without regret for what we shall 

leave behind, for in meeting you, after sought you for so long, you’ll 

find God. We shall find once more every authentic good which we 

have known here on earth, in the company of all who have gone 

before us, marked with the sign of faith and hope.’’ And I’ll get to 

see a Yankee game someday. 

Thank you very much. 

Senator WHITEHOUSE. Thank you very much, Mr. Gutierrez. 

That was wonderful, moving, impressive testimony from all of you, 

and I thank the panel so much. 
17 

I will turn first to my colleague from West Virginia, Senator 

Manchin, whose schedule is pressing, and allow him to ask his 

questions. 

Senator MANCHIN. Thank you, Senator. 

First of all, thank you all for moving testimonies, and I appreciate it very much. 

Mr. Gutierrez, I would assume that your sister found the document, because your father died in her arms. 

Mr. GUTIERREZ. Yes. When she called me, I said, ‘‘It’s in the can 

on the shelf in the closet. And it was appropriately deployed, and 

yes, he died comfortably in her arms. 

Senator MANCHIN. And your recommendation is, is that we go for 

ice. Is that what you mean? 

Mr. GUTIERREZ. Absolutely. Go for ice in the refrigerator, and 

that’s where the documents are, unless you’re a member of the 

younger generation, we expect there will be an app to address that. 

Senator MANCHIN. I assume there would be. I was thinking 

about that, thinking that, you know, with Facebook and everything 

else. 

Mr. GUTIERREZ. You know, it’s part of the overall recommendations. You’ll see that coming from our South Bend study over the 

next few months. 

Senator MANCHIN. Dr. Mor, I think in your testimony you said 

that people receiving hospice were receiving it too late, and I assume that we’re keeping them in the hospital longer than what 

they would desire, or what good we can do there. And we should 

be getting them back into the care of their loving home, and have 

hospice intervene. 

How do we do that? Is it just the rigmarole or it’s the business 

of business, I guess I could say. 

Dr. MOR. It’s complicated. I think one of the issues is that not 

enough people have the conversation with their doctor about their 

prognosis early and often. I was really delighted that Mr. Gutierrez 

brought up this issue of the conversation. 

It’s also, as Karren mentioned, about the lack of continuity. People bounce from one place to the other, and the system just proceeds. It’s also because there are these silos of both payment and 

accountability. Over the last decade, we’ve seen a doubling of the 

number of people who actually use the Medicare hospice benefit, 

but, there’s also been a very substantial increase in the proportion 

of people who only get 3 days of hospice before dying. And half of 

those people have a prior hospitalization, including intensive care. 

Senator MANCHIN. How long could hospice care, I mean how long 

could it be delivered? 

Dr. MOR. Well, if people, for instance, are arriving 10, 15, 25 

days before, it’s not a building, but in care, then there’s a reasonable process to deliver needed support and services. Even earlier, 

if there’s advanced time, and depending on the nature of the disease, there’s just more time to get the mix of services and symptom 

management right. And that’s what’s important. 

Without the integration, without the conversations, there are too 

many people who fall in the cracks. It might be done properly in 

Wisconsin, or Minnesota, but it’s not done properly often around 

the country. 
18 

Senator MANCHIN. And Ms. Weichert, a Medical Association 

study found that caregivers have access to patients’ living wills as 

infrequently as 16 percent of the time. How does your organization 

make sure that we have care teams that understand the goals and 

wishes? 

I go back to the early 1980s with my grandmother. And I had 

my grandfather die suddenly of a heart attack, and my grandmother, she died at the same time trying to help him. But, then 

9 days had passed, and she was on life support. And we just knew 

that she wouldn’t want to live a life like that, and eventually the 

whole family had to make this decision to make the hospital understand that’s what we know that she would have wanted. But, 9 

days had gone by. 

I mean today’s a different day. I understand that. How do we 

make sure? I heard that there were cases where the hospital still 

doesn’t believe, and they still continue to do things when there’s 

not a document. 

Ms. WEICHERT. Well, I would say there’s actually two things that 

I’d like to address in answer to that question. The first one is that 

in our care continuum, we have different touch points, where we 

have access to the patients and to the families, and we can have 

those conversations. The earlier someone accesses care, the easier 

it is to have those conversations. 

And the second thing that I would say is that I’m a two-time cancer survivor myself. I know how tough it is to have that discussion 

when you are sick, when you are diagnosed. It is important for us 

to encourage our families to have those discussions much earlier, 

so that the other extended family knows what their wishes are, 

knows what they would like to have happen to them. So, if a time 

comes, as your grandmother, when she can’t speak for herself, the 

family is confident that they’re doing the right thing. 

Senator MANCHIN. Right. 

Ms. WEICHERT. One of the things that Mary said to me in my 

story about Denzel Ekey, she said, ‘‘Denzel and I had discussion 

long before, because we did not want our children to suffer through 

wondering if they had made the right decisions. So, we had that 

discussion, and we put those papers in place, so everyone would 

know what our desires were for our end-of-life care.’’ 

Senator MANCHIN. Thank you. My time is at the end, and Dr. 

Cooney, I enjoyed your testimony very much, and God bless you, 

and I wish you the best. And I know that better educating the patient is going to make a better informed decision. 

What would you say, not everyone’s going to have the opportunity to have the access you’ve had or the care you got. 

Dr. COONEY. How do we improve access? 

Senator MANCHIN. Yes. You had specific care, which was pretty 

extensive, I understand. 

Dr. COONEY. Because I knew to ask for it. 

Senator MANCHIN. That’s it. Now, we’re talking. 

Dr. COONEY. You know, I think we need to educate the public, 

and I think we need to educate the healthcare providers, both, to 

see this as an integral part of medical care. 
19 

Senator MANCHIN. Thank you, Mr. Chairman. I appreciate it 

very much. Thank you. I’m so sorry I have to go to another meeting. 

Senator WHITEHOUSE. Thank you, Senator Manchin. We’re delighted that you could be with us. 

I get you alone, now that everybody is gone. This is great. It 

means I don’t have to obey my time limit. 

[Laughter.] 

Senator MANCHIN. I’m kind of afraid to leave. 

[Laughter.] 

Senator WHITEHOUSE. First, let me just thank you all again. This 

was a really superb panel, and I think it helps us make a wonderful record for pursuing action in this area. As I’ve been listening, 

I’ve been sort of trying to put the problems into different categories, and I’ve summarized the four categories as the transition, 

problem, lost in transitions, as Dr. Mor said, failures of directives, 

whether because they don’t exist, or because they’re not clear, or 

because they’re not honored and given effect. The treatment of 

pain, and palliative care, and the conditions surrounding the underlying illness itself, and the question of family support and confidence in the proceedings, I guess. 

Dr. Mor, you spoke very eloquently about the lost in transitions 

problem, and Ms. Weichert, you touched on it as well. I just wanted 

to let the other witnesses have an opportunity to touch on the transitions problems, if they cared to, where the handoff failures happen, and what we can do to minimize those transitions, where 

they’re not absolutely necessary. And I’ll put an asterisk on that 

question, because one of the things I’m pushing the Administration 

very hard to do is to take some of the meaningful use health information funds and create a pilot program, where qualified meaningful users will get the benefit of participating in the pilot, if they 

connect with nursing homes, which are not legally qualified, meaningful users. And that, I think, might help with some of the transitions that might be unnecessary. But, any thoughts that any of you 

have on the transition problem, I’d love to explore. 

Mr. Gutierrez. 

Mr. GUTIERREZ. Yes. Actually, at our facility we’ve narrowed it 

down to the specific document. We have a fully engaged, fully compliant electronic health record meeting all the requirements of 

meaningful use at this point. But, it’s not the same standard that’s 

applied for long-term care. So, we’ve identified the problem. 

We have it down to one document, and that is the admission discharge and transfer document and its contents, and having the 

standards established that they all specifically address a full complement of understanding the medications that the patients are on, 

the clinical picture prior coming to the hospital. And if we were 

able to get more of that information on a consistent basis, the first 

orders that are written in the emergency room will be a much more 

effective bridge, instead of starting all over again. And that industry currently is underfunded significantly nationally to develop 

these electronic health records. 

The second area, a bigger concern, with the—— 

Senator WHITEHOUSE. Just to jump in on that, in the future, my 

suspicion is, if we can get a pilot rolling on this, it would surely 
20 

prove that it actually saved money, and then we could extend the 

meaningful use program to nursing homes in line with the pilot 

without having to go and find a pay for, because, frankly, it would 

pay for itself in the improved outcomes and less unnecessary 

wasteful care. 

Mr. GUTIERREZ. Yes. You are correct. What we’ve been finding in 

all the wealth of data that the electronic health record requirements have been giving us, that we’re finding more and more opportunities to reduce costs. The data is actually magnificent. But 

not having access to the wealth of data that’s created in that industry eliminates a lot of the expense in those first 12 hours of care, 

in particular in the emergency room. 

So, I think your suggestion is something that we, as an industry, 

at least within our healthcare system, would find something that 

would help drive better communication, even within our own system. 

Dr. COONEY. I’d just like to mention one of the ways in which a 

palliative care program can also help with transitions of care, because what they often do is serve as a communicator between the 

silos that exist in our healthcare system. I remember one patient 

on whom I was asked to consult on who was in the ICU and each 

doctor was addressing their own little body system. You know, 

their own little body system, wasn’t doing too badly, but the 

woman was dying. I sat down and I wrote my note. I wrote, ‘‘Patient dying.’’ One by one, they all came by and wrote, ‘‘Agree with 

above. Will stop – whatever their treatment was.’’ Sometimes palliative care can help to serve that role of facilitating communication 

between the silos. 

Senator WHITEHOUSE. The issue of failure of directives is one 

that I think is particularly concerning. First of all, we have the societal failure that many people don’t have directives. And unfortunately, the whole fantasy about death panels emerged out of a very 

sensitive amendment proposed by actually a Republican colleague 

of mine, to simply provide for folks on Medicare to have a discussion with their doctor about what they wanted, so you could begin 

to make sure that there were, in fact, directives, and your wishes 

were, in fact, expressed and on record. I guess things can turn into 

strange political transmutations. But, it was a very, very sensible 

point. So, that’s the first problem. 

Then, you get to the problem of, as you said, Dr. Cooney, speaking doctor. These are very often written by lawyers, and they don’t 

translate readily onto the hospital floor. 

And then in the case in my family that I referred to, everything 

had been done, everything had been done properly, but unbeknownst to this wonderful woman, EMTs were forbidden to honor 

anything in the State where she died. You could have your priest, 

and your lawyer, and your accountant, and your family, and your 

advance directive, and your living will all right there, and they 

would come and resuscitate, because that’s what they’re obliged to 

do, unless you had a magic ribbon on your wrist. But, nobody had 

told her that she should have that magic ribbon on her wrist, plus 

she was a lady of a certain amount of elegance and style, and the 

last thing she would want was some ribbon on her wrist all day 
21 

in and out. So, there would have been a brawl about it, if that had 

been the option. 

So, there are all these failings in the existence of them, in the 

comprehensibility of them, in the actual effect, when people think 

they’ve got them squared away. And Mr. Gutierrez pointed out, it’s 

no good if you can’t find it when you need it. 

So, what are the best practices you’ve seen out there for coping 

with this? I know Gunderson Lutheran has worked hard on this. 

What do you see as best practices with respect to preserving and 

honoring wishes? 

Dr. COONEY. I was really excited by the legislation that came out 

that eventually got shot down by the ‘‘death panel’’ people. I’ve always worried that attorneys write advance directives. The advance 

directives get filed away with the will. Nobody ever looks at them, 

and nobody knows what they say. In reality, it should be 

healthcare providers, ideally, the physician, but at least a 

healthcare worker, who talks through these issues with each person, because healthcare providers know the kinds of situations that 

that person is likely to run into. 

The kind of complications I’m going to run into are different than 

the kind of complications that you’re going to run into, because I 

have specific medical conditions. And an advance directive can be 

specific to those sorts of issues. 

The advice I give everyone is to talk about their wishes with everybody they can, so that you have as many people as possible who 

know what you want, and will stand up for you. It doesn’t get rid 

of the problem with the EMTs. I’ve seen that myself. 

Senator WHITEHOUSE. Yes. 

Dr. COONEY. The more people who know what you want, and 

that it is really what you want, and not something you just wrote 

down on a piece of paper in your attorney’s office, when you were 

just signing documents, I think the better the chance that someone 

will stand up for you and make sure your wishes are enforced. 

Senator WHITEHOUSE. Well, that’s a very helpful thought. 

Now, on the question of palliative care and treatment of pain, are 

we seeing better outcomes than we did when Dr. Teno did her first 

work, and what can we do to improve further? 

I mean it’s conceptually possible that we could have no one die 

in pain in the country, is it not? I know that in the case of my father, he felt very good about all of this, both because he had a 

nebulizer that was delivering his painkiller to him whenever he 

wanted it, and it was very effective. And he controlled the button. 

So, he found he actually didn’t need it very much. He’d been a 

marine. He’d been, you know, he was a pretty tough guy, but he 

really wanted to know that if he was going to need it, it was there 

for him. And so, that was very successful. And then, also, he had 

confidence in the hospice nurses around him, that if something 

happened, he could cope. So, his anxiety level about the whole operation, even though it was his imminent death, was actually pretty low. He felt he was in the hands of capable trained professionals. He knew he had a way to deal with pain. Let’s bring on 

the rest of it. He was able to face it with a lot of calm. And I think 

that actually helps in the pain circuit as well. 
22 

But, Dr. Mor, you’ve done a lot of looking at this. What do 

you—— 

Dr. MOR. So, others could chime in, but my mother died here in 

Washington 33 years ago of cancer, and as was the practice in 

those days, she was down at the end of the hall, as far away from 

the nursing station as possible, and in pretty constant pain. Things 

have improved dramatically since that time, with patient-initiated 

analgesia, and a general sensitivity at all levels, and in most of the 

specialties in that medicine. 

It’s not to say that it’s always done right, or it’s not to say that 

it isn’t sometimes done excessively, because for every action, there’s 

sometimes reaction. But the constant awareness of pain, and the 

reported pain levels for people who are in their final weeks or 

months of life has dropped empirically, dramatically. 

There are still other issues to deal with, but I think that our attention to pain as a sort of a sixth vital sign, as it were, has actually been very, very effective over time. 

Senator WHITEHOUSE. It’s actually reported in Rhode Island now 

as a vital sign. 

Dr. MOR. It’s reported as a vital sign. It’s actually being reported 

as a quality measure for most hospitals, for hospices, for nursing 

homes, and for home health agencies. And whether the reports are 

exactly right or not right is not the issue, but it means everybody 

is attending to it and trying. 

Senator WHITEHOUSE. Yes. Ms. Weichert, would you agree? 

Ms. WEICHERT. Well, I do have a comment about that. 

Senator WHITEHOUSE. Please. 

Ms. WEICHERT. Thank you for asking me, but, again, isn’t it interesting how we’re all intertwined with our personal experiences. 

But, my grandson was diagnosed with Ewing Sarcoma, which is a 

cancer that hits children. And he was served in a regional hospital 

that just prior to his surgery, where they were going to amputate 

his leg, after a year of very aggressive chemotherapy, he was in 

significant pain, significant pain, and they couldn’t seem to get it 

under control, nor did they, in my opinion, try hard enough. 

And so, I asked our palliative care team if they would become involved. And, in fact, they said, ‘‘Well, there is a palliative care team 

in that hospital. Why don’t we call them?’’ And so, our physician 

called that palliative care team in the hospital, where he was, 

three floors down, and they were appalled that they had not been 

called before. The concern is, because he was a child, we didn’t 

want to overmedicate him. Oh. Well, did we want him to hurt? And 

so, within a couple of hours they had his pain under control. Thank 

goodness. 

So, I think that there is still a lack of acceptance, even among 

other healthcare providers, about what palliative care is and what 

it can provide in quality of life to the patient. 

Senator WHITEHOUSE. It strikes me that there are circumstances 

in which, although we silo conceptually curative care from palliative care, that there are nevertheless circumstances in which welldelivered palliative care has a significant curative effect. Is that 

the experience? 

Ms. WEICHERT. Oh. I would say absolutely, Senator. And I think 

that they definitely go hand in hand. 
23 

Senator WHITEHOUSE. Okay. That one was unanimous. 

And the last point that I’ll touch on is this question of family 

support. Even to the extent that we’re getting better at treating the 

patient with advanced illness, and trying to improve the directives 

that help that patient control how they’ll be treated in their advanced illness, particularly in a very advanced illness, the family 

tends to be involved. 

You’ve touched on the question of when there’s no advance directive, then there’s confusion, there’s family stress, different family 

members are disagreeing about how much care to do, and you’re 

in for a real mess. I think it was you, Mr. Gutierrez, who pointed 

out that having a solid directive lifted that burden off of the rest 

of the family, and was a good, you know, reason for people to get 

this done in their own lives, so they’re not causing that stress 

among their loved ones. 

But, I think, Dr. Cooney, Ms. Weichert, you were talking a little 

bit more about actually trying to provide support for the family in 

getting through this, and that that, in turn, provided benefit back 

into the care process. Would you want to address that a little? 

Again, put it in terms of best practices. If you were going to design a program that had best practices, what would be the best 

practice for attending to the family of the person in the state of advanced illness? 

Dr. COONEY. As you pointed out, Senator, just as a patient’s 

death doesn’t happen in isolation, it affects the family that lives on. 

A significant illness doesn’t happen in isolation. It affects everyone 

who is around them. And yet, our healthcare payment system is 

very patient focused. The hospice Medicare benefit, you know, is directed at the patient and family. 

I do a lot of work with physician billing, and you don’t get paid 

for talking to the family. It’s not considered an important part of 

your job. I think that’s a huge mistake, because when we don’t coordinate care for people in their individual context, we lose the opportunity to really deliver the best care to the patient, because 

their family is really part of that illness unit. 

Senator WHITEHOUSE. Mr. Gutierrez. And then Ms. Weichert. 

Mr. GUTIERREZ. Senator, the one intervention that is most appropriate dealing with the complexity of the medical information is the 

role of nurse navigation, having an individual who basically acts as 

a concierge to all the options, both on the moral, ethical, and scientific side. 

We, unfortunately, cannot wait for, nor can the system afford for 

the right piece of legislation to come out. So, systems need to adopt, 

you know, the following three criteria that we’re holding ourselves 

to. All patients and families, upon knowledge of a serious illness, 

must be made aware of the opportunity to have a palliative conversation. That’s number one. 

Number two, the professionals, all the professionals who are in 

contact with the patient during that serious illness, in their competency requirements, in their job descriptions, will have the competency to participate in an intervention and understand their role. 

And third, that we need to find a way, irrespective of the payer’s 

responsibilities, within our ministry, to provide an infrastructure 

that supports it on a consistent basis. 
24 

So, you know, the nurse navigator from our perspective is probably valued the most, because during that 15- or 20-minute physician interaction, or that ICU interaction, or that emergency room 

interaction, patients need more. And our investment in those individuals is something that is slowly evolving throughout all of our 

ministries. 

Senator WHITEHOUSE. And the nurse navigator has responsibility 

for addressing not only the concerns of the patient, but also addressing the questions of the family. 

Mr. GUTIERREZ. Absolutely. Usually, we’re looking at individuals 

that are masters prepared. Whether they be oncology nurse navigators, or pediatric nurse navigators, usually having one assigned to 

a particular clinical service line is one that could be of a great assistance and guidance. 

Senator WHITEHOUSE. And Ms. Weichert. 

Ms. WEICHERT. Well, I totally agree with my colleague here. But, 

I would also say that when someone is given a serious diagnosis, 

someone that you love is given a serious diagnosis, most of us 

today run to the internet, and we look to see what is out there. And 

quite honestly, it’s very confusing. 

We also, the first place we go is, they’re going to die, and what 

are we going to do, and how am I going to take care of them. It 

is the gift that we give one another when we are able to take care 

of somebody we love, and it’s a gift that they give to us, but generally, we don’t know how to do that, and we haven’t been trained 

in that, and we don’t know what to expect. And so, having those 

conversations very early on, having that opportunity for a palliative consult at the very beginning of a serious diagnosis, I think is 

critical to moving this issue forward in our country. 

Senator WHITEHOUSE. Well, thank you. It’s been a wonderful experience to share this panel with all of you. Your own experiences, 

as well as your dedication in this area, and your knowledge, has 

been immensely helpful. And I think that we’re at a relatively 

primitive level, despite the fact that we’re a very sophisticated society, in terms of how we deal with people with events, illnesses, how 

we support them and their families through the events they’ll miss, 

and how we face and manage the process of death, when it comes. 

And I think you’ve all been very helpful in helping this Senator 

and the others who were here make a record that we’ll inform our 

decisions as we go forward, to try to provide more support to you 

and your excellent organizations, who are doing this out in the real 

world and with real patients. 

So, I thank you very much for the time and trouble you took to 

come here and for the experience and wisdom that you shared. The 

record of these proceedings stays open for ordinarily a week, if anybody wishes to add any additional materials. And subject to that, 

the hearing is adjourned. 

[Whereupon, at 3:25 p.m., the hearing was adjourned.] 
(25) 

APPENDIX 
26 
27 
28 
29 
30 
31 
32 
33 
34 
35 
36 
37 
38 
39 
40 
41 
42 
43 
44 
45 
46 
47 
48 
49 
50 
51 
52 
53 
54 
55 
56 
57 
58 
59 
60 
61 
62 
63 
64 
65 
66 
67 
68 
69 
70 
71 
72 
73 
74 
75 
76 
77 

Æ