[Senate Hearing 112-553]
[From the U.S. Government Publishing Office]


                                                        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



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                       SPECIAL COMMITTEE ON AGING

                     HERB KOHL, Wisconsin, Chairman

RON WYDEN, Oregon                    BOB CORKER, Tennessee
BILL NELSON, Florida                 SUSAN COLLINS, Maine
BOB CASEY, Pennsylvania              ORRIN HATCH, Utah
CLAIRE McCASKILL, Missouri           MARK KIRK III, Illinois
SHELDON WHITEHOUSE, Rhode Island     DEAN HELLER, Nevada
MARK UDALL, Colorado                 JERRY MORAN, Kansas
MICHAEL BENNET, Colorado             RONALD H. JOHNSON, Wisconsin
KIRSTEN GILLIBRAND, New York         RICHARD SHELBY, Alabama
JOE MANCHIN III, West Virginia       LINDSEY GRAHAM, South Carolina
RICHARD BLUMENTHAL, Connecticut      SAXBY CHAMBLISS, Georgia
                              ----------                              
                 Chad Metzler, Majority Staff Director
             Michael Bassett, Ranking Member Staff Director


                                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


                    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.
    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 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 palliative 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 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.
    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.
    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.
    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.]

   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 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.
    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 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 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.
    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 multi-hospital, 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 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 high-quality, 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.
    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.
    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.
    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.
    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 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 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.
    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 well-delivered 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.
    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.
    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.]


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