[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
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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
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Chad Metzler, Majority Staff Director
Michael Bassett, Ranking Member Staff Director
CONTENTS
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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
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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.]
APPENDIX
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