[Senate Hearing 114-844]
[From the U.S. Government Publishing Office]




                                                        S. Hrg. 114-844
 
                   THE RIGHT CARE AT THE RIGHT TIME:
                   ENSURING PERSON-CENTERED CARE FOR
                    INDIVIDUALS WITH SERIOUS ILLNESS

=======================================================================

                                HEARING

                               BEFORE THE

                       SPECIAL COMMITTEE ON AGING

                          UNITED STATES SENATE

                    ONE HUNDRED FOURTEENTH CONGRESS


                             SECOND SESSION

                               __________

                             WASHINGTON, DC

                               __________

                             JUNE 23, 2016

                               __________

                           Serial No. 114-26

         Printed for the use of the Special Committee on Aging
         
         
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]         
         


        Available via the World Wide Web: http://www.govinfo.gov
        
        
        
                        ______                       


             U.S. GOVERNMENT PUBLISHING OFFICE 
48-079PDF           WASHINGTON : 2022         
        
                       SPECIAL COMMITTEE ON AGING

                   SUSAN M. COLLINS, Maine, Chairman

ORRIN G. HATCH, Utah                 CLAIRE McCASKILL, Missouri
MARK KIRK, Illinois                  BILL NELSON, Florida
JEFF FLAKE, Arizona                  ROBERT P. CASEY, JR., Pennsylvania
TIM SCOTT, South Carolina            SHELDON WHITEHOUSE, Rhode Island
BOB CORKER, Tennessee                KIRSTEN E. GILLIBRAND, New York
DEAN HELLER, Nevada                  RICHARD BLUMENTHAL, Connecticut
TOM COTTON, Arkansas                 JOE DONNELLY, Indiana
DAVID PERDUE, Georgia                ELIZABETH WARREN, Massachusetts
THOM TILLIS, North Carolina          TIM KAINE, Virginia
BEN SASSE, Nebraska
                              ----------                              
                  Kevin Kelly, Majority Staff Director
                 Derron Parks, Minority Staff Director
                 
                         C  O  N  T  E  N  T  S
                         

                              ----------                              

                                                                   Page

Opening Statement of Senator Susan M. Collins, Chairman..........     1
Opening Statement of Senator Sheldon Whitehouse, Member of the 
  Committee......................................................     3

                           PANEL OF WITNESSES

Atul Gawande, M.D., M.P.H., Executive Director, Ariadne Labs; 
  Professor, Department of Health Policy and Management, Harvard 
  T.H. Chan School of Public Health; Samuel O. Thier Professor of 
  Surgery, Harvard Medical School; Staff Writer for ``The New 
  Yorker,'' Boston, Massachusetts................................     5
Kate Lally, M.D., F.A.C.P., Chief of Palliative Care, Care New 
  England Health System, Providence, Rhode Island................     8
Amy Berman, Senior Program Officer, The John A. Hartford 
  Foundation, New York, New York.................................    10

                                APPENDIX
                      Prepared Witness Statements

Atul Gawande, M.D., M.P.H., Executive Director, Ariadne Labs; 
  Professor, Department of Health Policy and Management, Harvard 
  T.H. Chan School of Public Health; Samuel O. Thier Professor of 
  Surgery, Harvard Medical School; Staff Writer for ``The New 
  Yorker,'' Boston, Massachusetts................................    31
Kate Lally, M.D., F.A.C.P., Chief of Palliative Care, Care New 
  England Health System, Providence, Rhode Island................    41
Amy Berman, Senior Program Officer, The John A. Hartford 
  Foundation, New York, New York.................................    49

                       Statements for the Record

"The Best Possible Day," New York Times, October 5, 2014.........    55
"Living Life In My Own Way-And Dying That Way As Well," Health 
  Affairs, April 2012............................................    60


                   THE RIGHT CARE AT THE RIGHT TIME:

                   ENSURING PERSON-CENTERED CARE FOR

                    INDIVIDUALS WITH SERIOUS ILLNESS

                              ----------                              


                        THURSDAY, JUNE 23, 2016

                                       U.S. Senate,
                                Special Committee on Aging,
                                                    Washington, DC.
    The Committee met, pursuant to notice, at 11:01 a.m., in 
Room 562, Dirksen Senate Office Building, Hon. Susan M. 
Collins, Chairman of the Committee, presiding.
    Present: Senators Collins, Heller, Casey, Whitehouse, 
Blumenthal, Donnelly, Warren, and Kaine.

                 OPENING STATEMENT OF SENATOR 
                   SUSAN M. COLLINS, CHAIRMAN

    The Chairman. Good morning. Not long ago one of my dear 
friends was a patient at the Gosnell Memorial Hospice House in 
Scarborough, Maine. Despite her serious illness, her days were 
filled with visits from friends and families and many joyful 
moments. She was surrounded by her family when she died 
peacefully.
    In many cases hospice care enables dying patients to remain 
in the comfort of their own homes, free from unnecessary pain, 
and surrounded by family and friends. The Gosnell Memorial 
Hospice House provides an alternative when care in the home is 
no longer possible or sufficient. It provides a comfortable, 
attractive, homelike setting for hospice patients and their 
families, where they can receive patient-centered care. From 
pain and symptom management to psychological and spiritual 
support, and even to delivering longed-for scones to go with my 
friend's tea, the care at the Gosnell Memorial Hospice House is 
first-rate. Such compassionate, high-quality, and seamlessly 
coordinated care can make a tremendous difference for seriously 
ill patients such as my friend and their families.
    Advances in medicine, public health, and technology are 
helping more and more of us live longer and healthier lives, 
but when medical treatment can no longer promise a continuation 
of life, patients and their families should not have to fear 
preventable pain, avoidable distress, or care that is not 
consistent with their values or needs.
    A majority of Americans say that they would prefer to die 
at home. Yet, most people die in the hospital. Fewer than 45 
percent of Americans receive hospice care at home during their 
last stages of life, and nearly half of those receive hospice 
care in the final weeks or even days of their lives.
    Federal policies must support efforts to relieve suffering, 
respect personal choice, provide opportunities for people to 
find meaning and comfort during serious illness, and most 
important, remain in control of their own care.
    We know that hospice care can benefit both the patient and 
the family, so why aren't people accessing this service sooner?
    I am concerned that this may be a result of a restriction 
in Medicare that requires beneficiaries to stop conventional 
curative care for their terminal diagnosis in order to elect 
hospice care. It is encouraging that CMS and organizations such 
as BlueCross BlueShield of Massachusetts are beginning to 
evaluate the benefits of allowing beneficiaries to receive 
curative and palliative care concurrently.
    As the Senate Co-Chair of the congressional Task Force on 
Alzheimer's Disease, I am also particularly aware of the needs 
of Alzheimer's patients and their families. Although it is the 
fifth leading cause of death for seniors, Alzheimer's is not 
always viewed as a terminal illness, and too little attention 
is paid to the special end-of-life needs of Alzheimer's 
patients and their families.
    While strides are being made in improving care, people with 
dementia often die without the benefit of hospice care. 
Medicare's eligibility requirements for hospice can prevent 
some individuals with dementia from accessing quality care. 
Current regulations require a physician to certify that a 
patient entering hospice is likely to die within 6 months. It 
is difficult for physicians to determine with that kind of 
precision how long anyone with a terminal disease will leave, 
and it is particularly challenging with a disease like dementia 
which has an unpredictable trajectory.
    As a consequence, Alzheimer's patients who could benefit 
from the better pain control, fewer hospitalizations, and 
greater family satisfaction that hospice provides are under-
enrolled in hospice care.
    Additionally, since hospice has traditionally been used for 
the care of patients with cancer, hospice staff are not always 
sufficiently trained and prepared to meet the special needs of 
Alzheimer's patients and their caregivers.
    Today, we will explore ways to improve the quality and 
availability of care and discuss models of care that are 
helping people with serious illnesses and their families. We 
are so fortunate to have an outstanding panel of witnesses, 
including a personal hero of mine, Dr. Atul Gawande, whose book 
``Being Mortal'' has been a bestseller. In fact, I thought I 
was going to have it right here to hold up, and this book, by 
the way, and my ownership of it, has an interesting journey. It 
first was read by Jay Rockefeller, who passed it on to Angus 
King, who passed it on to me, and I had my husband read it 
first, and then I got to read it.
    Now Dr. Gawande is probably not happy about what that means 
for book sales, that there was--there you go. I could hold that 
up. That there were so many readers.
    Senator Whitehouse. This is the iPad version.
    The Chairman. I passed it on to my staff, whom I asked to 
bring it today, but we also have truly outstanding other 
witnesses, one of whom Senator Whitehouse will introduce, and I 
will introduce the other, but I want to thank all of them for 
being here today.
    Regrettably, one witness who was supposed to be here today 
is Dr. Katherine Pope. She was the medical director of that 
wonderful hospice house in southern Maine, but the 
thunderstorms caused her early morning plane from Maine to be 
canceled.
    The Chairman. I know that this issue is a personal passion 
for my colleague from Rhode Island, Senator Whitehouse, and I 
so appreciate his serving as the Ranking Member at today's 
hearing, and I now turn to him for his opening statement. Thank 
you.

                 OPENING STATEMENT OF SENATOR 
          SHELDON WHITEHOUSE, MEMBER OF THE COMMITTEE

    Senator Whitehouse. Thank you so much, Chairman Collins.
    As many people in the audience know, Senator Collins has an 
abiding concern for this issue. She has held hearing after 
hearing, and I am really grateful for her leadership and that 
she and Ranking Member McCaskill agreed to hold this hearing, 
and I welcome Senator Heller as well. This is a really, really 
important issue.
    I first became engaged with it as our State's Attorney 
General and, for years, worked with our medical professionals 
and faith leaders and advocates for seniors, particularly those 
engaged with care for the terminally ill: to first, improve our 
policies for assessing and managing pain; second, to look at 
the different socioeconomic factors that often intruded on a 
patient's ability to get the decisions that they wanted to make 
about care to be what happened; and then to simplify and 
clarify the legal standards and protections so that it was 
easier for people to make decisions about their care that would 
hold up later on when the pressures of an emergency tended to 
foul things up.
    Like many of us here, I also had the experience of loved 
ones who have died with and without their wishes for their care 
at the end of life being respected, and it is certainly very 
clear to me that when a patient's wishes are respected it not 
only changes things at that particularly intimate and important 
time for the patient but also for all of the family. It adds a 
whole added dimension to the natural grief if you cannot do 
anything about helping your loved one get the kind of care at 
the end of their life that they wanted.
    In 1997, the Institute of Medicine described a human care 
system as one that--and I will quote them here--``people can 
trust to serve them well as they die, even if their needs and 
beliefs call for a departure from typical practices, yet 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.''
    As we know, too often our system fails to meet this 
standard. As Senator Collins pointed out, most everybody would 
prefer to die at home, and yet, most die in an acute care 
hospital or a nursing home. We can do better.
    Part of it is cultural. Part of it is not having organized 
ourselves as a society to have the conversation and to get 
people to make the decision and put it on record, but an 
unfortunate piece of it is tied to the payment structure, so we 
need to design our payment systems so that they will yield to 
the desires of patients and families, so today, I am 
introducing the Removing Barriers to Person-Centered Care Act, 
which stems from a series of roundtable discussions with Rhode 
Island stakeholders and with the Coalition to Transform 
Advanced Care. The common theme that emerged was that providers 
are really frustrated with Medicare rules and regulations that 
prevent them from coordinating care for individuals who have 
serious advanced illness and get these patients the right care 
and in the right setting, so this would simply open up pilots 
and allow CMS to say, bring us your ideas, and we will give 
waivers where necessary so that you can do what you want.
    One of the things that inspired me in this, Senator 
Collins, was a hearing witness that you brought from Maine who 
described the way in which she had had to work through a whole 
array of difficult procedures in order to deliver the care that 
she felt her patients deserved, so I am hoping that we can get 
this done:
    Allowing Medicare patients to receive hospice care and 
curative treatment at the same time ought to be a sensible 
solution.
    Allow patients to receive Medicare coverage in skilled 
nursing and without these 3-day inpatient hospital stay rules 
ought to be something that we can work through, and allowing 
Medicare patients to receive home health services before they 
are finally homebound, but when it is cheaper and better to 
serve them at home, ought to be another restriction we can work 
around, so there are a lot of issues on which we can make 
progress.
    I join Chairman Collins in welcoming the witnesses. Dr. 
Gawande is a nationally renowned expert in this area, who also 
brings an extraordinarily humane point of view that shines 
through his expertise, but my personal hero here today is Kate 
Lally, and if I could just take a minute to introduce her now, 
then we can go on through that.
    The Chairman. Yes.
    Senator Whitehouse. Kate wears a lot of hats in my home 
State. Our second largest hospital chain is Care New England, 
and she is the Chief of Palliative Care at the Care New England 
Health System. Care New England also has an accountable care 
organization that tries to improve care and lower costs and 
work through the ACO model. She is the medical director for 
that ACO model, and finally, she is the Hospice Medical 
Director for Care New England VNA Hospice.
    She spearheaded the hospital system's role as a pioneer 
sponsor in the Institute for Health Care Improvement's 
``Conversation Ready'' initiative. She is a graduate of Yale's 
School of Medicine and post-graduate training in internal 
medicine at the Hospital of the University of Pennsylvania.
    She is an outstanding doctor, but also really a remarkable 
leader on this in Rhode Island, and somebody who I count on a 
lot. Her judgment and her humaneness are really paragon, so 
delighted that she should be here.
    The Chairman. Thank you very much, Senator.
    I, too, want to welcome Senator Heller and Senator Casey 
for being with us today.
    Now we will turn to our panel. As I said, I am absolutely 
thrilled that Dr. Atul Gawande is here today, and I now have my 
copy of his book to hold up, and he is a surgeon and a best-
selling author. He is the Executive Director of the Ariadne 
Labs and a professor at both Harvard School of Public Health 
and Harvard Medical School.
    His most recent book, ``Being Mortal: Medicine and What 
Matters in the End,'' has been on the ``New York Times 
Bestseller List'' for more than a year and a half, and to me, 
that indicates the hunger in this country for guidance and a 
dialog on these important issues of caring for people with 
serious illnesses.
    Senator Whitehouse has introduced our second witness, but I 
also want to extend my welcome to Dr. Kate Lally.
    Our final witness this morning is going to be Amy Berman. 
She is a Senior Program Officer at the John Hartford Foundation 
in New York City. She has a wide range of experience as a 
researcher and as a cancer survivor herself. She has a unique 
perspective from all different angles on the issues surrounding 
care for individuals with serious illnesses.
    Thank you all for joining us today, and we will start with 
Dr. Gawande.

            STATEMENT OF ATUL GAWANDE, M.D., M.P.H.,

          EXECUTIVE DIRECTOR, ARIADNE LABS; PROFESSOR,

          DEPARTMENT OF HEALTH POLICY AND MANAGEMENT,

           HARVARD T.H. CHAN SCHOOL OF PUBLIC HEALTH;

         SAMUEL O. THIER PROFESSOR OF SURGERY, HARVARD

      MEDICAL SCHOOL; STAFF WRITER FOR ``THE NEW YORKER,''

                     BOSTON, MASSACHUSETTS

    Dr. Gawande. Thank you, Chairman Collins, and thank you, 
Ranking Member Whitehouse and the members of the Committee, for 
the chance to provide some testimony on ways to improve what is 
too often an inhumane system of care for people with serious 
and life-limiting illness.
    Now I just want to start out by saying I do not come to 
this issue as an expert. I came to this issue as a practicing 
surgeon at the Brigham Women's Hospital in Boston, where midway 
through my career (I am a little over a decade now in practice) 
what I had come to recognize was that my training as a 
clinician had helped me understand and feel quite competent and 
capable in taking care of people when they come to me with 
fixable problems--a cancer I can remove. I would primarily 
practice cancer surgery, but I did not find over and over again 
that I was all that prepared or all that clear about what it 
meant to be competent and excellent at taking care of people 
who were bringing unfixable problems how to manage the 
consequences of an incurable cancer, worsening organ failure, 
frailties of aging, and I can tell you many, many cases, but I 
will just pick out one, where a neighbor called--my daughter's 
piano teacher. Her name was Peg Bachelder, and she was 62 years 
old.
    She had had a cancer. It had been treated a couple years 
before, and it came back. It came back in her pelvis. It had 
spread to her liver. She had undergone chemotherapy. She was 
admitted to the hospital with fevers and pain and findings that 
the chemotherapy that she was on had not produced a response 
to--the cancer had not responded.
    At that point the team did not have any conventional 
options to offer, and the debate was what should she do. Should 
she try for something, anything, experimental therapy, 
something to attack this problem? Or, should she just be 
comfortable, as the doctor said? Should we try something to be 
comfortable? The way she heard it is: Should she do something, 
or should she do nothing? She called and wanted to know: What 
should we do?
    This is the moment that we are debating. This is the moment 
that we are having a national debate and have been having this 
national debate for a while now.
    We break the bad news, and then what? What do we think it 
means to be great at care?
    I honestly did not have good answers. I did not have the 
training, and I did not have the background, and so what I did 
was I got to pick up my writer's pen and go as a journalist to 
say let me talk to a whole bunch of folks and see what I should 
be doing different.
    I ended up interviewing more than 200 patients and families 
about their experiences with serious illness and serious 
infirmities, more than scores of experts, including folks like 
in Dr. Lally's profession of palliative care hospice nurses, 
nursing home workers, critical care doctors, you name it, and 
what came out of that were a couple simple lessons: Medicine 
and society have failed to recognize that people have 
priorities in their life besides just living longer. Those 
priorities, the quality of life they want, varies from 
individual to individual and over time.
    The most reliable way to learn what people's priorities are 
for their care is to ask them, and we do not ask. We ask less 
than a third of the time.
    The result is that for the majority of people their care, 
at some point along the way, becomes out of alignment with what 
their deepest wishes are for what matters to them besides just 
surviving, and we are seeing it now play out on a national 
level. We have--since 1988, we have had measures every year of 
some of the aspects of quality of life, and the data has been 
that now today for people in the last year of life they spend--
more than half spend--are often in moderate to severe pain. 
More than half have more than a month of depression, periodic 
confusion, incontinence, shortness of breath, but the 
treatments they are receiving are entirely focused on solely 
the question of: Do you survive, or do you not survive? And 
that is where you get suffering.
    Now when we do ask, when care is not narrowly focused on 
just the control of the disease but on the wider range of 
priorities, on both quality and quantity, the experience is 
stunningly different. The result is that when people are asked 
and receive options of palliative care, which includes--which 
is focused on quality of life: People choose less toxic care. 
They enter hospice sooner. They suffer less. They are more 
physically capable. They are better able to interact with 
others and for longer in their life. Their family suffers less 
depression. They spend fewer days in the hospital and in the 
ICU, and as a result, they have lower costs, and they do not 
die sooner; they live longer, if anything else, and what we 
have tried to understand then in the research center where I 
work--at Ariadne Labs, what we try and understand is: How do we 
take that knowledge that palliative care doctors create and 
bring it to ordinary doctors like me? What am I supposed to do 
differently next time I am with a patient? That is what I did 
not understand, and the few critical questions--they are good 
at understanding how to ask the questions that help you 
understand what matters in people's lives, and so you ask 
questions like:
    What is your understanding of where you are with your 
illness at this time?
    What are your fears if your health worsens?
    What are your goals if time should be short?
    What are you willing to go through and not willing to go 
through for the sake of more time?
    What is the minimum quality of life you would find 
acceptable?
    When I listen to people who were asked these kinds of 
questions, they answer them in ways--they say, you know, things 
like: ``I would like to get to a family wedding. That is a 
really important thing to me.'' ``I want to be at home.'' Or, 
as one--the father of one of my colleagues told her, ``If I can 
eat chocolate ice cream and watch football on television, that 
is good enough for me. Keep me going. If I cannot, let me go.'' 
It was like the best living will ever.
    Now Peg Bachelder, my neighbor and the piano teacher of my 
daughter, when I asked her these questions, it came down to one 
thing; she wanted to be home, she wanted to be comfortable, and 
she wanted to teach. She wanted to teach her students.
    She went home on hospice, and that is what they managed. 
They provided medical capabilities so she was not only not in 
pain, but she could teach again, and my daughter got 4 weeks of 
lessons from Peg. She had the last--she lived 6 weeks. In the 
last 2 weeks of her life, she had a recital with all the 
children and my daughter playing there, and it is the reason 
that now, 4 years later, music is the career she wants in her 
life.
    What it made clear is that we have had a 50-year experiment 
in medicalizing mortality, treating it as purely a problem of 
the disease and how we focus our treatment on it, and that has 
failed because we failed to recognize that our goal is not 
merely survival, and often we respond by saying that the goal--
well, our goal must be a good death, and that is wrong either--
--it actually disturbs me that we think that that is the goal.
    The goal is a good life, as good a life as possible all the 
way to the very end.
    Recent data came out just last week from researchers at 
Harvard, showing that if you reach age 65 we will get to live, 
on average, at least 20 more years of our life. We live better 
and with less disability, but we are still going to have 8 
years of our life with disability, with significant disability, 
and that is a prison if no one asks you what the quality 
choices are you want in your life and matches care to it, or 
that is incredible freedom in that we get to be lucky enough to 
live to be old and sometimes frail but get to do the things 
that matter to us, and it is achieved by making these 
conversations normal, the conversations about what your 
priorities are.
    The gaps are large. We have a long way to go. In the 
education of clinicians, we have gaps. We have gaps in the 
availability of palliative and geriatric expertise. We have 
gaps in the systems to ensure people have health care proxies 
and discuss their priorities. We have gaps in research, but 
with just some tiny efforts underway--my own research center's 
work; as Senator Warren knows, a coalition also that we have 
launched in Massachusetts involving the payers, involving the 
State government, involving health care organizations, 
consumers, medical schools, and a public campaign--we are 
showing that better is possible, and I look forward to 
discussing how.
    Thank you.
    The Chairman. Thank you very much, Doctor.
    Dr. Lally.

                 STATEMENT OF KATE LALLY, M.D.,

               CHIEF OF PALLIATIVE CARE, CARE NEW

        ENGLAND HEALTH SYSTEM, PROVIDENCE, RHODE ISLAND

    Dr. Lally. Thank you, Chairman Collins, Senator Whitehouse, 
and members of the Senate Special Committee on Aging. Thank you 
so much for having me here today.
    As Senator Whitehouse, I do serve as Chief of Palliative 
Care at Care New England, but I am also a practicing hospice 
and palliative care physician, much as Dr. Gawande mentioned.
    I want to talk with you a little bit today about our work 
in palliative care and the program we have developed in our 
hospitals and in the community, and I want to tell you about it 
in terms of how it affected one of our patients, Mr. L., and 
the barriers that he faced as he approached the end of life.
    Our program started in 2012 when we joined forces with the 
Institute for Health Care Improvement and their work on the 
Conversation Project and becoming ``Conversation Ready.'' It 
was through that work that we learned statistics, as have been 
mentioned here today, that while 70 percent of us say we want 
to die at home, 70 percent of us will die in a hospital, 
nursing home, or other long-term care facility, so in order for 
our patients to live and die in ways of their choosing, and not 
in ways that are put upon them by the medical system, we 
developed a palliative care program, first in one of our 
hospitals and then in all four, and we treated a lot of 
patients. We treated 1,400 patients in our hospital alone last 
year.
    One of those patients early on was Mr. L. He was a man with 
pancreatic cancer that I met in one of our hospitals. His 
oncologist asked me to meet with him to manage pain but also to 
have the kind of conversation Dr. Gawande just mentioned about 
his understanding of his disease and the treatment options in 
front of him.
    When I met with him, he told me that he understood that he 
would die from his cancer, he understood he had a terminal 
diagnosis, but until that day he wanted to live with his 
cancer, and what mattered most to him was spending time with 
his family, spending time with his grandchildren, and being 
home, but he said his quality of life at the moment was so poor 
due to pain and anxiety, so over the next few days I worked 
with him. We adjusted his medications, and we made him 
comfortable, and he was discharged home.
    Not long after, though, his oncologist called me. He had 
failed his first line of chemotherapy. His cancer was 
progressing. Now she was looking at a second line, but she was 
not optimistic, and his pain was getting worse with his 
disease, so she wanted me to meet with him and talk about those 
symptoms and talk about what options lie ahead when 
chemotherapy was no longer available.
    Unfortunately, for Mr. L, at that time we were like most 
health systems in this country, and we did not have community-
based palliative care, but we quickly developed it. We hired 
nurse practitioners who go into patients' homes, like Mr. L. 
They can adjust pain medication, and they can continue those 
conversations because they are not one-time conversations.
    We also integrated into our new accountable care 
organization because when you look at those highest risk 
patients many of them are approaching end of life and we need 
that basic skill set on symptom management and goals of care, 
so we work with our nurses, our nurse practitioners, our social 
workers in our ACO to help them have those conversations.
    Recently, a patient said to one of our nurses, I feel like 
I am dying and everybody is afraid to tell me. She did not know 
what to say. What do you say? We have done some training on 
conversation tips and techniques to help our team with that.
    We have also applied for and received a Hartford Foundation 
grant, and we have worked with Ms. Berman on improving 
transitions of care for palliative care patients out of the 
hospital and into the community, and we send nurses into our 
area skilled nursing facilities, again, to continue those 
conversations about what matters most to patients and help 
transition them to services like hospice when it becomes 
appropriate, but even with all that specialized care, we knew 
we could not make a dent in things for exactly the reasons Dr. 
Gawande mentioned. All of our providers, all of our nurses need 
the skill set, so we applied for and received a Geriatric 
Workforce Enhancement Program grant from HRSA, where we are 
working with our PCPs.
    Myself and a geriatrician are going into their practices 
and asking them those questions, as Dr. Gawande just 
discussed--what are the barriers? What are you struggling 
with--and having these conversations. We are giving them tips, 
techniques, and tools to do this better.
    We are starting with our young physicians, our medical 
students, our residents. We are having them go through a month-
long training in geriatrics and palliative care, and many of 
them go through a simulation experience where they meet with 
patients, or actors who play patients and family members, to 
have those difficult conversations in a safe space, but even 
with all of this, there are still barriers that excellent care 
along cannot overcome. There are legislative barriers.
    For example, Mr. L was lucky. He went home, but if he had 
gone to a skilled nursing facility, he would have had to make a 
choice. He could have gone for rehabilitation and care focused 
on getting stronger, but given his advanced cancer that would 
have been unlikely.
    If he chose hospice, that would have been the right care 
for him, but he would have been stuck paying for his room and 
board fee in the nursing home, which would have been covered if 
he had chose more rehabilitative-focused care.
    Senator Whitehouse, as he mentioned, is addressing many of 
these issues with his Removing Barriers to Patient-Centered 
Care Act of 2016. There are other legislative opportunities--
the Palliative Care and Hospice Education and Training Act, 
which really focuses on educating doctors on these issues, as 
Dr. Gawande focused on the need to do. In addition, there is 
the Care Planning Act of 2015 looking at how we can pay in 
better ways for patients as they approach the end of life and 
the specialized care that they need.
    It is an incredibly exciting time to be in health care, and 
many of these issues we are talking about today most of us will 
face at one point in our lives.
    I thank you for the opportunity to be here.
    The Chairman. Thank you very much.
    Ms. Berman.

                STATEMENT OF AMY BERMAN, SENIOR

             PROGRAM OFFICER, THE JOHN A. HARTFORD

                 FOUNDATION, NEW YORK, NEW YORK

    Ms. Berman. Thank you Madam Chair, Ranking Member 
Whitehouse, and illustrious members of the Special Committee on 
Aging.
    I am delighted to be here. My name is Amy Berman, and I am 
a nurse and the Senior Program Officer at the John A. Hartford 
Foundation in New York. Our sole mission is to improve the care 
of older adults.
    I am here because I am terminally ill. This is the face of 
somebody who lives with life-limiting illness. I want you to 
remember that. Five and a half years ago I was diagnosed with 
stage four cancer, inflammatory breast cancer that spread to my 
lower spine. The cancer is progressing and this particular kind 
of cancer has the worst prognosis, so for most people with 
breast cancer, 90 percent survive 5 years or more. Mine, the 
prognosis, the likely course of the disease, 11 to 20 percent 
survive to 5 years. That means it is not just unlikely, it is 
highly unlikely, that I would live to 5 years.
    I am at five and a half years, and I am not just here; I am 
doing great. I feel well. I work full-time. I get to play and 
travel, walk my puppy, do all of the good things that we get to 
do in life. I enjoy, but the reason is because I get the care 
that most people cannot get, the care that is not yet 
available. I get access to the workforce that is not broadly 
out there, and so I am going to talk a little bit about that.
    When I was first diagnosed, I went to two doctors. It is 
not uncommon you go for a second opinion.
    One doctor wanted to throw everything at the disease, just 
as Gawande was talking about. No conversation. Never asked me 
what it is I was hoping to accomplish. Knowing that there is no 
cure for the illness, he wanted to do the most intense 
chemotherapy, mastectomy, radiation, and more of the most 
intense chemotherapy. He was ready to fight, fight, fight, but, 
unfortunately, there is absolutely nothing that he would have 
been doing in his Hail Mary pass that would have gotten me to a 
better place, and in fact, it would have gotten me to a worse 
place.
    I went to another oncologist, and this oncologist explained 
information in the way in which we talk about care planning 
should be, talked openly with me about treatment options, and 
she said, what is it that you would like to accomplish?
    I said, well, you know, I kind of like the Niagara Falls 
trajectory, so I start here feeling really good, and I end at 
the universal ``We all end here.'' I want to go good, good, 
good, and drop off the cliff. Give me more of the good days and 
try to limit the bad days. That is all that I ask for. You 
know, there is no cure. There is no cure on the horizon, so 
just give me as good of a life as possible.
    Now that first doctor, who never asked me a question, who 
suggested what he was going to do to me, not for me, he was 
going to drop me off the cliff with burdensome treatment, and I 
was going to go out to the same end point.
    It was the complete opposite of the trajectory that I 
wanted. It would have been harmful. It would have been costly. 
I would have been hospitalized multiple times.
    I refer to myself as a walking triple aim. I have the good 
fortune of having better health, better care, and I have saved 
about a million dollars to date. A million dollars. I am one 
person. One. An ``N of 1,'' a million dollars, and the benefit 
is not the cost savings. I mean, yes, that is a benefit to 
society, but the benefit to me is that I get to continue living 
a good life. I get treatment, but the treatment that I get I 
choose those treatments that have the least amount of side 
effect, the least amount of burden, so that I can continue to 
feel as well as possible and get that Niagara Falls.
    I also have a professional life, and professional and 
personal have certainly converged for me. I lead the John A. 
Hartford Foundation's investments in models of care that 
improve health cost and quality for older adults. We have 
invested roughly a half a billion dollars since 1982 in 
efforts, including things like: The Center to Advance 
Palliative Care, which is a major resource to this field. 
National POLST, Physician Orders for Life-Sustaining Treatment. 
Respecting Choices, one of those models that we talk about. The 
Conversation Project, you know, how do you have conversations 
at the kitchen table, and they have a wonderful starter kit. 
Vital Talk. Training for health care professionals to be more 
engaged in the conversation. Home-based primary and palliative 
care. The work of the Independence at Home demonstration, and 
Dr. Gawande's work. My dear Kate Lally's work.
    You know, we have the good fortune of getting to, you know, 
select the best, most promising, evidence-based things in the 
country, and they are all represented in these discussions.
    As a person who gets the kind of care that is the happy 
story, the right way of getting care, I want to tell you my 
care is the exception. I pay for my care. I organize my care.
    People who have money would not know to have this care. It 
is truly the exception, and yet, it is the thing that makes 
everyone succeed in life. It makes my family happy as well, by 
the way, so there are a few things that I would recommend.
    The first, you know, regarding the workforce, we do not 
have enough experts in palliative care, and we do not have 
enough broad-based competence for the rest of the workforce 
that cares for seriously ill people and the skills around 
palliative care, so they call that primary palliative care, so 
you need both primary and the experts.
    In graduate medical education, it is shocking to me that we 
do not give a single slot to palliative care. Cardiologists, 
neurologists, plastic surgeons, but not a single slot to 
palliative care. I really think this needs a relook, and nurse 
practitioners, so some of the things that are before you that--
some of the pieces of legislation that Dr. Lally talked about 
address these kinds of issues. Models of care: There are a 
number of outstanding models. Evidence-based, but the bottom 
line is putting palliative care along with the treatment that 
one gets from their regular provider, so as an extra layer of 
support. As Dr. Gawande mentioned, there are improvements, 
reduction in hospitalization, nursing home placement, people 
live better, and the savings are tremendous. It is all of those 
things that you want. Research: I just need to mention that the 
NIH has doubled their funding in this area. It has gone from 
0.2 percent to 0.4 percent. It still rounds to zero; it should 
not. As we do a moon-shot and try to find cures, we need to be 
attentive to care because the death rate still hovers at 100 
percent and will continue to do so.
    The last thing that I would like to say to this wonderful 
Committee is I want to see the actions happen. I have a life-
limiting illness. I would like to see legislation passed that 
furthers these kinds of things that we are talking about, and I 
would like to be there to witness that signature.
    I thank you so much.
    The Chairman. Thank you very much, Ms. Berman. I cannot 
imagine more eloquent testimony for our Committee to hear, and 
I just wish every member of the Senate could be here to have 
heard your plea for action at the end of your statement but 
also your extraordinary story.
    As I listened to you, I thought you epitomize what is the 
theme of our hearing, which is you received the right care at 
the right time, but I cannot help but wonder; if you had not 
had a medical background and been a researcher who was so 
familiar with this area, would you have been able to get the 
kind of care that is consistent with your wishes?
    Would you have even known, particularly after going to the 
first oncologist, if you had stopped with him? Do you think 
that most people realize that there are alternatives to the 
Hail Mary approach that you described that your first 
oncologist wanted to pursue?
    Ms. Berman. I think not. I think you are right. If I did 
not know about the field of palliative care and had not been 
one of the supporters of that for the past 11 years, long 
before I was ever diagnosed, perhaps I would not have known to 
access the kinds of services that help me feel great today, but 
even when you think about having these kinds of discussions, I 
think a lot of people go to the doctor and they say, treat me, 
and it is kind of like getting in a cab and saying, take me to 
the airport, except you end up at DCA Reagan and you meant to 
go to Dulles. You know.
    We go in assuming that people are going to do the right 
thing, but without having that deeper-dive conversation we are 
not going to get to the right place.
    I am reminded of a person who was the head of a health 
system, a chief nurse officer, a very, very accomplished woman, 
and her husband got sick and had care and later died, and she 
was as expert as expert could be, but she said to me, I never 
thought to question the doctor.
    When we are in these situations, I think a lot of people--
if we do not structure the kind of encounter in a way that 
really engages people, if we do not intentionally do these 
things, you know, the way that both of my esteemed colleagues 
on the panel do so well, if we do not structure them well, they 
are not going to naturally happen that way, and people are 
going to be taken down a path that may not be the right path.
    The Chairman. Thank you.
    Dr. Gawande and Dr. Lally, one of my favorite expressions 
is from Uwe Reinhardt, the Princeton economist, and he says 
that Americans are the only people on earth who think that 
death is negotiable, and I have always felt that that sums up 
our reluctance to have these kinds of conversations.
    As you said, Dr. Gawande, the goal is not a good death; it 
is a good life. I love that phrase, and as both of you have 
pointed out, many physicians, unless they are experts in this 
area, and that is very rare, particularly in a rural State like 
mine--we do not ask the majority of people if their care is 
consistent with their wishes, but there is another situation 
that I think is even more difficult, and that is when a patient 
is no longer able to articulate his or her wishes because those 
conversations which should occur when people are younger and 
healthy have never occurred, and they should, in my judgment, 
occur more than once during a person's life because people 
change as far as what their goals may be.
    What do we do in situations where the patient has no 
advance directives, no indication of their wishes, and is 
unable to articulate what a good life would mean to them?
    The family members do not always agree, I have seen this, 
on what should be done.
    Dr. Gawande and then Dr. Lally.
    Dr. Gawande. Well, I am partly going to have--you know, Dr. 
Lally, this is the common thing she does every week, and I will 
be very interested to hear how she talks about it, but the two 
things that are fundamentally important here: Number one is 
that often even when people have not had the direct 
conversation, you can find ways to trace back and understand 
the values they have expressed in their life. I will give you 
one example.
    I did a number of interview with people in their first 
month of being in a nursing home and then met people along the 
way, and even very--and this was a place where 70 to 80 percent 
had advanced dementia, and one of the people that I met along 
the way was a woman who was 85 years old, had Alzheimer's 
disease, and she had started to develop the advanced form that 
includes sometimes having difficulty with swallowing, and so 
she was put on a pureed food only diet, and she was caught over 
and over again hoarding cookies. She would steal cookies from 
neighbors, eat them, and the staff would find them, take away 
her cookies, and write her up, and they would call the family. 
You know, she is breaking the rules. This is not safe, and 
understanding that--I think there is one level of recognition 
about the discussion with the families. The assumption is that 
safety and health are the only thing that matters, but here she 
was expressing what her one joy was in life, that she wanted to 
eat, and you want to just say, let her have the damn cookies, 
and that ability to say it is okay to take risks that are 
consistent with what the person is voicing as what matters to 
them, whether it is what mattered before or what matters now, 
and how they are expressing it along the way, and for me that 
was a revelation, that you could ask what else matters to a 
person besides just their survival. Tell me what their joys are 
in life. Tell me what their joys were in life. Tell me how that 
I would understand how to do this, and I will just say this 
week I was in the operating room with a patient where they had 
not had the discussion, and I discovered surprisingly extensive 
cancer, and I had to make a decision about whether we would 
have to sacrifice her ability to talk and leave her with a 
permanent tracheotomy or not. She was only in her 50's, and I 
went to the family to discuss it, and they had not discussed 
this before, and we had not recognized going in that this might 
be the kind of thing that I would even need to have discussed.
    If I just put in front of them, so what do you want to do, 
they were completely lost, but I could say to them, do you 
think that she would want to sacrifice--would she be willing to 
live--would she consider a minimum quality of life acceptable 
to live with a tracheotomy?
    They said, no. They could not imagine it, that she would 
take some risks. We could try radiation. We could try other 
things that we could potentially address, and it was not the 
end of the conversation, but it let me make a decision that we 
did not push forward at the end of that time. We would wake her 
up. We would have ongoing conversations and then come back to 
decide if we would go back and go from there, but I think that 
even when on one level it is too--it is always too early to 
have these conversations, people feel, until it is too late, 
but then it is also always possible to be able to have these 
conversations even after the person is not expressing for 
themselves and bring people together.
    The Chairman. Thank you.
    Dr. Gawande. Dr. Lally, you see the conflict yourself.
    The Chairman. Dr. Lally, I am going to ask you to be brief 
in your response because I have gone over my time, or if it is 
okay, and I am also going to turn the gavel over to Senator 
Whitehouse, something that rarely happens in a Senate 
committee, because I have an amendment on the Senate floor and 
did not anticipate the timing here, but please, if you do not 
mind, I will have your Rhode Island witness begin a response. 
Thank you.
    Senator Whitehouse. Thank you for your amendment on the 
Senate floor.
    The Chairman. Thank you.
    Dr. Lally. Thank you.
    I agree with Dr. Gawande. In his description of that 
patient with the tracheotomy, what he asked was not do you want 
a tracheotomy or do you not? He said, what is a good quality of 
life to you, and would having this tracheotomy be a good 
quality of life?
    When I talk with patient and families, when there is a 
family member who cannot speak, I ask that family, tell me 
about your loved one. Tell me about the kind of life they led. 
Tell me about the types of values that they had, and if I hear 
this person was so active, they were always out and about, the 
idea of being bed bound would be very difficult to them, then I 
may talk about options for treatment one way.
    If I hear, as Dr. Gawande mentioned earlier, sitting and 
watching football and having a little bit of Jello, that is a 
good quality of life, I may guide my treatment options another 
way, but I think you can often talk with patients and families 
and really get a sense of that person. Clearly, it is ideal to 
get it from the patient themselves, but if they cannot speak, 
the people who love them often know well, and there are tools 
now. We have talked--all of us have talked--about the 
Conversation Project, and they have recently put out a tool 
targeted at patients with advanced dementia to help families 
really think about what the person would value and what they 
want most.
    The Chairman. Thank you very much, and I do turn it over.
    Senator Whitehouse. Thank you, Chairman.
    When we are dealing with this patient group--people who are 
usually elderly, often very, very ill, and at least in 
contemplation of their mortality--and we are trying to develop 
care plans for them that meet their wishes and their family's 
wishes, I want to ask you how three specific Medicare payment 
rules affect getting a good outcome.
    One is the Medicare payment rule that forbids Medicare 
patients to receive hospice care and curative care at the same 
time. Does that help in any way?
    Another is the Medicare rule that forbids patients to 
receive Medicare coverage in a skilled nursing home without 
having had the two-night rule, the consecutive 3-day inpatient 
hospital stay first, which often forces, everybody winks, and 
you get a phony hospital stay in order to open up the skilled 
nursing home aspect, and the third is forbidding Medicare 
patients to receive home health care until they are completely 
homebound, even if they are terribly ill and it would be 
appropriate to deliver home health care.
    Those are three rules we would like to find workarounds 
for. Could you, just from your own practical experience--let me 
go across this way this time and ask for your comment on any or 
all of how those rules affect getting the care that we are 
trying to aim at here.
    Ms. Berman. Senator Whitehouse, you have named three things 
that are real barriers to good care.
    You are correct that for people who are seriously ill they 
may not be homebound and they may have an unsteady trajectory. 
There may be periods of time that they need to access this 
care, and they are not permanently homebound, and so you are 
right; that is a major barrier.
    Each one of these things stand in the way of good care.
    I think, you know, what you are really talking about is 
opening up a set of services that really can be life-changing, 
life-enhancing for not only the person but also their family, 
and allow them to be supported and stay at home.
    Senator Whitehouse. These rules, in your view, are 
obstacles?
    Ms. Berman. They are obstacles. If I have to go into a 
hospital in order to enter hospice, that is a tragedy. It is 
not what it is that I would think that I would want.
    My hope is that, like 70 percent of people surveyed in 
America, I want to die at home, and for me to have to go 
through a hospitalization that has all of the potential harms 
and costs, it is not what I want, and it is not hopefully what 
I will ever need.
    Senator Whitehouse. Dr. Lally.
    Dr. Lally. I would agree absolutely. These are huge 
barriers to how we deliver care to our patients.
    Just yesterday I met with a woman who has a uterine cancer 
which is very advanced, and chemo is much more likely to cause 
harm than to benefit her, so I had had a big meeting with her 
family and her, and we talked about that, and her wishes were 
not to go through with chemotherapy, but then as we talked 
about hospice, and she and her family saw very well the 
benefits hospice would bring--being able to call someone 24 
hours a day, having the nurses come into your home when 
needed--they saw that that was a huge benefit, but her son 
said, what if there is a clinical trial? What if she needs a 
blood transfusion? What do we do?
    Then we start the dance. Well, then we could take her off 
of hospice and talk about these options, but would anything 
really change with that? No. She needs that person-centered 
care coming in, talking with her and her family as she gets 
sicker and weaker about what to expect as her disease 
progresses, and to put up these barriers where we cannot--she 
cannot get that blood transfusion, she could not get one round 
of chemotherapy, if it were felt to benefit her, as a barrier 
to hospice, is a huge barrier that our patients face, and they 
have to acknowledge I am going to die within 6 months. That is 
something we say to them right out front. That is a big thing 
to ask a patient to acknowledge, so I think that is a huge 
barrier.
    Senator Whitehouse. Just one additional point--presumably, 
these rules were all put in place with a good intention.
    Dr. Lally. Yes.
    Senator Whitehouse. To try to control costs and so forth, 
but when you are dealing with this particular population that 
we are talking about today, is it your experience that if we 
were to waive those rules so that people could go through a 
more patient-centered health program, that that would drive 
costs up?
    Dr. Lally. It is not. You know, this particular patient I 
think is a good example. She was very clear in her wishes not 
to pursue chemotherapy, but her family was not so clear on 
those wishes, and that was a lot of our discussion.
    I would worry with her that, let's say, her son went out 
and said: You know what? We are not going to do hospice because 
we may pursue chemotherapy down the road, and many of my 
patients make that choice.
    I would think then without having that expert care coming 
in and saying the fact that you are getting weaker, the fact 
that you are having trouble swallowing, that is disease 
progression, that is going to bring her back to the hospital, 
and then we are going to do all of these medical things that we 
do to try and prolong her life, which are not going to help her 
very much and probably are not consistent with her wishes, 
which is going to end up having us have a much higher cost 
rather than that one round of chemo.
    I know some private insurers will carve out occasional 
curative treatments because they know that the overall cost 
will still be lower, so no, I do not think this will lead to an 
increase in costs. I think it may lower them.
    Senator Whitehouse. My time has run out. Let me turn next 
to Senator Casey.
    Senator Casey. Thanks very much. I appreciate Senator 
Whitehouse and Senator Collins convening this hearing.
    What a panel. We often come to hearings on a whole range of 
subject areas in different committees, and often you are 
informed after that hearing or leading up to it. Sometimes you 
are inspired, and that happens more often than you would think, 
but rarely have I been to a hearing where we are both informed, 
inspired, and moved by your testimony.
    I wanted to start with Ms. Berman. I guess it was--I am not 
certain of the year--1997 or 1998 the ``Philadelphia Enquirer'' 
did a series on long-term care. Three parts or five parts, I 
cannot remember, but it was a remarkable series focusing on one 
topic, and their writer, his name is Michael Vitez, in one of 
the stories, said--quoting experts and advocates, he said, life 
can have quality and meaning even until the very last breath.
    I have never forgotten that line. It has been kind of a 
touchstone for me on a whole range of issues, but I have never, 
I do not think, met the personification of that, and you seem 
to personify that, the spirit of that assertion, so we are 
grateful that you brought that to us today.
    How do we bring this not only to more--not just more 
families but even to the younger people so they can begin to 
think about the end, their end of life, or at least begin to 
think about planning?
    The focus of my question would be young people but in 
addition to that, obviously, physicians. It is, in a sense, a 
culture change as much as anything, and what would you 
encourage us to do by way of policy of advocacy or otherwise to 
move in the direction you hope we can move in so that more 
people have the experience that you are currently enjoying?
    Ms. Berman. Thank you so much, Senator Casey.
    I would say that there needs to be greater public 
awareness, and this is awareness at all ages. There needs to be 
a campaign of sorts so that people understand what is at stake, 
so that people understand that they have an opportunity to do 
advance care planning sooner. Seventy-5 percent of people are 
unable to make some or all decisions at the end of life.
    If we do not think about these things early, the decisions 
are left in the hands of family members who have no 
understanding of what somebody wants, and I can tell you that 
will rip apart a person's soul--making decisions and not 
knowing whether they are making the right decision. It is a 
horrible thing, not just for the person who is receiving the 
care but for the family.
    I think also, you know, in terms of the young people, just 
kind of normalizing an understanding of what end-of-life is. 
You know, a public campaign would do that as well.
    I think we have to think about a greater awareness about 
palliative care, so palliative care, many people view this as 
turning off care or giving up care, or they conflate it with 
end-of-life.
    If you look at me, and I am seriously ill, palliative care 
is really about keeping your life, and it goes along with 
curative care or it goes along with the care that keeps you 
going, so I receive treatment, and I have palliative care, and 
that has helped me avoid at least one hospitalization. It has 
helped me proactively manage pain and symptoms. They have had 
conversation with my family. It has been helpful on so many 
different levels to avoid a lot of the care that I do not want, 
but for people to access it, it has to be something that is a 
conversation started much earlier, that people become aware of 
what it is and what it means, and I would say it is the best 
friend of the seriously ill.
    Senator Casey. I appreciate that.
    I guess I will be running out of time, but I did want to 
ask, I guess, one or both of the doctors. Kaiser Family 
Foundation tells us that 14 percent of primary care providers 
are offering advance care planning to help patients better 
navigate advanced illness and end-of-life, so obviously, this 
is for the health care practitioners in the system a huge 
change that we have to confront, and I have only got about 10 
seconds, but let me go a little over. Any advice you have for 
us just in terms of those kinds of structural changes?
    Dr. Gawande. I will jump in with a couple of things. Number 
one is that we are demonstrating models now for being able to 
bring the skills that palliative care doctors have to 
nonpalliative care clinicians.
    We just ran a trial, or just finished a trial, where we are 
having results come out from taking the whole Dana-Farber 
Cancer Institute. We randomized, so half of the clinicians we 
provided a two-and-a-half-hour training in asking the kinds of 
questions that palliative care doctors ask: What is your 
understanding of where you are with your illness? What are you 
willing to go through and not willing to go through for the 
sake of more time? Those kinds of things, and the clinicians--
you know, even very experienced clinicians--talking to people 
with advanced disease, changed how they went about their 
conversations, and we took it to primary care clinicians as 
well.
    We were able to--by supporting them, not just with training 
but also identifying the patients at highest risk of dying, and 
notifying them when they have not had these conversations with 
the system. We got from less than a third having these 
conversations to over 90 percent.
    They also had them earlier, at 5 months before deaths 
instead of just in the last few weeks, and the result was--that 
we made public with a scientific presentation at the Society 
for Clinical Oncology--we have cut their likelihood of 
depression during their last period of life by 50 percent, from 
20 percent to 10 percent, and also cut their rate of anxiety, 
so we now know there are models, and ours is not the only one, 
for how to take it to change clinician training, and I would 
say there are a couple policy points of view here. Number one, 
our quality measures for hospitals, for health systems, nursing 
homes, elder care, hospice care, they are narrowly focused on 
just safety and health, which are just measures of survival.
    They do not include well-being. They do not include 
questions like: Are you able to--are you suffering during the 
course of your care? What is the likelihood you are suffering 
along the way?
    Developing those measures and having them incorporated so 
that well-being is considered, and not just quantity of life, 
is reflected in our policy.
    Second, I think we have been doing this work of learning 
how to teach and actually measuring whether we have these 
impacts, doing it on tiny funds and with little significant 
effort at demonstration projects and making them work, and so 
that is an opportunity.
    Then, third, our research funding is aiming----
    Senator Casey. We may have to wrap up only because we are 
out of time.
    Dr. Lally, I may ask you to submit it in writing if yo you 
can do that.
    Dr. Gawande. Okay. Just the third one is that our research 
funding has almost its entire budget focused on survival 
without asking whether we have therapies and whether we have 
implementation programs that are able to improve the quality of 
life. Our therapies are not even designed to improve the 
quality of life along the way, purely focused on survival 
often.
    Senator Casey. Great. Thanks very much.
    Senator Whitehouse. Senator Warren. Just so my colleagues 
know, then Senator Kaine and Donnelly is the order we have.
    Senator Warren. Thank you, Mr. Chairman.
    Thank you all for being here, and I want to say thank you 
especially for your being here, Ms. Berman.
    I was very close to my father, and my mother had already 
passed away when he was diagnosed with advanced stage cancer, 
and we went through the same thing about in and out of the 
hospital, and I remember when my daddy took me aside and said, 
baby, I am just asking you for one last gift. Let me die at 
home with you and my brothers there, and we did. We made that 
happen, and I remember a few hours before he died he said, this 
has been a great gift, and he held my hand, and I thought, no, 
Daddy, you are the one who gave us the great gift.
    We knew we were doing the right thing. My brothers and I 
were all there, and we could give him the best possible days 
that were left to him, so I know those are hard, hard subjects 
for families to talk about, but you have given us a chance to 
talk about it and to urge other families to talk about it.
    Now I want to go back to your work, Dr. Gawande. According 
to a recent survey from the University of Massachusetts Medical 
School, 85 percent of respondents believe that patients should 
discuss end-of-life concerns with their physicians; only 15 
percent have actually had the conversation about their own 
wishes. That is a giant disconnect.
    Now, Dr. Gawande, you have identified in this two key 
problems. First, for many people these are very hard 
conversations to have, and second, there are tangible barriers 
in the system that prevent an individual's wishes from being 
followed, like the lack of widespread reimbursement for 
providers' time to help patients and their families make these 
plans, lack of physician training at the end-of-life and 
palliative care, and the overall lack of coordinated person-
centered care.
    I am not the only family member who has had to argue with 
doctors, with other hospital personnel, about end-of-life 
treatments, even when I had a fistful of papers that my father 
had filled out, and, frankly, I am no retiring violet on such 
things, of fighting for people I love, but the tilt for more 
care no matter what was palpable.
    Let me ask you about this, Dr. Gawande. How is the 
Massachusetts Coalition for Serious Illness Care, which was 
organized in part by BlueCross and BlueShield and has a 
partnership with Ariadne Labs, which you are the executive 
director for--how are you working to address that part of the 
disconnect?
    Dr. Gawande. We have--thank you for asking that, Senator.
    We just launched a couple months ago a coalition, a 
statewide initiative, first to measure the gaps, and the 
University of Massachusetts survey has been crucial. It showed 
how few people and where we are, but we are going to make that 
measure every year and watch and drive those numbers down.
    The way that the coalition is working is by bringing 
payers, health systems, the consumer groups, and others 
together, groups like the Conversation Project based out of 
Massachusetts, to foster the consumer conversation, the public 
conversation, working with the medical schools at the very 
beginning.
    You know, I had no exposure to geriatrics, to palliative 
care skills, or to what a hospice was. I did not ever walk or 
set foot in a hospice until I did the research for writing my 
book, and being able to work with the medical schools, we are 
the first State where the medical schools are all teaching 
these as basic skills, and then teaching at the higher levels, 
all the way up the chain, and getting the commitment of the 
health systems, and then the payers. We have BlueCross-
BlueShield that agreed this year that they would cover hospice 
without requiring you to give up curative care. It was based on 
Aetna findings that when they randomized that, that they had 70 
percent who chose hospice, that they ended up being able to 
save money, and that they had much better quality of life for 
people without harming survival, so we are aiming to see if we 
can bring all of the payers in the State aboard with doing 
that, and I agree with Senator Whitehouse and the legislation 
that aims to do that here at a national level as well.
    Senator Warren. Good. Well, I just want to say thank you 
because what Massachusetts has begun with the Coalition for 
Serious Illness Care is potentially transformative here, both 
in how we deliver health care and how people can have their 
wishes respected at the ends of our lives.
    There are lots of options on the table to advance these 
goals, including pilot projects for Medicare beneficiaries with 
advanced illnesses. This is the program proposed--I will quit. 
I am giving you a plug here, Senator Whitehouse.
    Proposed by Senator Whitehouse, better to test ways that we 
can manage this at the end of life, so I just want to say thank 
you. Thank you all for your work.
    Thank you for your bill, and thank you for holding this 
hearing.
    Senator Whitehouse. Thank you, Senator Warren.
    Senator Kaine.
    Senator Kaine. Thank you, Mr. Chairman.
    Thanks to the witnesses.
    What a wonderful hearing, and the title. You know, I think 
we have a system that is really institution-centered, not 
person-centered, and you can see this replicated in a lot of 
areas of policy. Juvenile justice. There is a whole lot of 
areas, you know, where we will put money into institutions, and 
when you have to get a waiver for somebody to be treated in 
their home and they do not need a waiver to be treated in the 
institution, it just tells you we have got the whole thing 
flipped around. You should not need a waiver to be treated in 
your home. If we are going to have to have waivers, you should 
get a waiver to have to go to an institution, but the bias is 
moneys to institutions, not moneys to persons, and that is why 
I am so happy to have you here today.
    Senator Warren told a moving story about her dad. Now I am 
fortunate enough that my parents and my wife's parents are 
still alive, but one of my best friends--I am going to tell the 
reverse of the story. One of my best friends' father-in-law was 
slipped very quickly into a position where he was not able to 
make his health care decisions for himself, and my friend 
watched his wife and the siblings have the battle about what 
should be done, and here is a family dynamic that is common to 
a lot of families. They were not all on the same page, and in 
fact, one of the siblings had frankly been kind of persona non 
grata in the family and been estranged from his father and kind 
of battled with his father over his lifetime, and now with his 
father not able to make decisions this was his moment in his 
own odd way--no, I am going to battle for Dad. We need to do 
everything for Dad--when the other siblings had reached the 
position: We think we know what Dad would have wanted, and it 
would not have been to use extraordinary measures, and so in 
this painful moment of losing their dad, they are also ripping 
the Band-Aid off this family dynamic of the differences among 
the siblings that went back, and the father, who is there in 
this precarious State, is kind of almost just like a suffering 
innocent and silent bystander to a family dynamic that is 
exacerbated because of the fact that the family had not come 
together and reached conclusions before, and so many families 
go through this, so many families go through this, and you 
know, the death is hard enough without the dynamic.
    I am intrigued by, Doctor, as you discussed the 
Massachusetts example, and I think we really want best 
practices, and I am enough of just kind of an incentive thinker 
that, you know, what about a reimbursement under Medicare or 
Medicaid or even under Social security for people hitting that 
age and a joint reimbursement to both the physician and the 
individual for doing an end-of-life plan?
    That plan does not have to be submitted to anybody other 
than the individual's physician, but if it is done and if a 
physician says it has been done, then have an incentive in 
place so that people, you know, will not just shy away from 
something, ``Oh, I do not want to talk about that,'' but will 
say, ``Hey, there is really a reason to do that.'' I think that 
could take that gap between the 85 percent and the 15 percent 
that Senator Warren was talking and start to close it, but we 
really need to learn from you, and I will just open it up and 
see if you have additional. We really need to learn from you 
about what are the incentives that would help us close that gap 
and enable us to get over the hump and have these discussions 
which, though painful, are certainly necessary and avert all 
these kinds of later challenges, and I would bet to say if you 
did an incentive program like that and paid for it and it 
worked, the financial savings, payment notwithstanding, would 
be enormous. Anyway, whatever your thoughts, I would appreciate 
hearing them.
    Dr. Lally. Senator Kaine, you have described a day in my 
life. That is what I do every day as I work with families and 
patients, and very often there is exactly what you beautifully 
described--years and years of infighting in families that 
really comes to a head at this very emotional moment, and of 
course, when families are losing a loved one, there is grief. 
There will be grief, but then on top of it there is that 
stressor of: What did Dad want?
    I find what I often do is I try to, as you again 
beautifully described, bring the patient back to the center and 
really try to put aside a lot of the infighting and think not 
``Could we do X, Y, and Z,'' but ``Tell me about your father 
and what his wishes would have been,'' and then really 
reframing some of the language.
    As you mentioned, there is always the child from out of 
State, who comes in and says, you know, I am going to save Dad.
    We talk about what everything means to that person, and 
everything should be consistent with their goal. It shouldn't 
necessarily be everything to keep you alive as long as possible 
because that may not have been his wish, but what is everything 
that we can do to meet this person's goal, so that is a very 
common conversation that I have, and it is also a very common 
thing I talk with patients about.
    When I am saying, we need to come up with a plan, I will 
say to them: Your family, of course, they will be sad when it 
is your time, but if you can stop that fighting, if they can 
hear your voice, of course, they will grieve, but there will 
not be anger. There will not be stress, and you can take that 
stress off of them.
    I often use that incentive, but clearly, there could be 
other incentives as well.
    Ms. Berman. Senator Kaine, it is an excellent question.
    I would say that if we had access to palliative care in the 
community, if there were a consultation with individuals, one 
of the things that they do, as Dr. Lally is describing, this is 
part of the process of their care. It is not just about 
managing pain and symptoms, and care coordination, and 
addressing spiritual needs. It is a team-based care but also 
very much is about understanding goals of care and have advance 
care planning done, but right now palliative care is largely 
available in hospitals. It is in about 90 percent of large 
hospitals. We do not really have a payment mechanism to cover 
palliative care in the community, so the care that I get--I do 
get palliative care, and I am not in the hospital, which is 
great--I pay for that, so I get the care that is not available. 
I seek it out very intentionally, but I am not sure whether or 
not we need incentives other than some way to be able to 
incorporate this into the usual part of care, as the Institute 
of Medicine has recommended in their oncology report and their 
end-of-life report, as Dr. Gawande talked about in terms of the 
research findings on cost and quality, and as Dr. Lally 
described in her everyday life, and as I stand before you 
saying, this is exactly what other people should have, but they 
will not get unless we all do something.
    Senator Whitehouse. Senator Donnelly.
    Senator Donnelly. Thank you, Mr. Chairman, and thanks to 
the entire panel.
    Ms. Berman, I just wanted to ask you: You had to make some 
really tough decisions. You do not know if the decision you are 
making is going to shorten your life or is going to take away a 
chance or make a chance better. Tell us a little bit about how 
you worked through all that, if you would not mind.
    Ms. Berman. Thank you, Senator Donnelly.
    When I first diagnosed, I think I was just shocked. It was 
not something that I expected to hear because I felt too good. 
I had a spot on my breast, and that is how we started figuring 
it out, but I felt great, and I then had to go for a full body 
scan, and when they did the scan they saw a spot light up on my 
lower spine, and the only way to figure out whether that was 
cancer and not wrenching my back--I happen to like surfing in 
the ocean. I could have wrenched my back, so the only way to 
find out was to remove a piece of bone from the lower spine, 
and I agreed to do that because I needed to know was this early 
or was this late because I thought it would be a very different 
set of choices, so I did have that piece of bone removed, and 
it did confirm the cancer, and then I knew I was stage four. I 
felt great, and I am stage four, so you know, making these 
kinds of decisions, I think it is important to know that most 
people know their diagnosis, but they actually do not know 
where they are in terms of their care. They do not have a good 
sense of, you know, what people in the medical profession call 
a prognosis, the likely course of the disease.
    There was a piece written in ``Health Affairs'' that said 
60--basically, two-thirds of physicians who were surveyed, 
their own self-report, two-thirds of them said they either gave 
a rosier prognosis or lied outright, so they are not telling 
people, and people cannot be part of that decision without that 
good information. That is a problem.
    Senator Donnelly. Yes.
    Ms. Berman. We need to have care planning, which of course, 
Ranking Member Whitehouse, you know, this is incorporated into 
your efforts. You know, the notion of doing good care planning 
is more than just advance care planning.
    Senator Donnelly. Right.
    Ms. Berman. You know. I am not at the end of life, so it is 
not just about those decisions at the end. It is about 
understanding kind of where we are and then what are the 
options so we know which way to move forward.
    Senator Donnelly. Well, I think you are incredibly brave, 
and we are really, really proud of you.
    Dr. Gawande, I want to ask you about trying to help the 
medical community make better decisions.
    I remember a very, very close relative of mine who was 
elderly and did not have any kids, so we were trying to help 
with the decisions that were made, and they lived in another 
part of the country, so I went down to try to help, and he had 
just come out of a colonoscopy surgery, and he was like in his 
last week of life, and I thought to myself, this is crazy, but 
nobody had said this is not going to make his last week better, 
no prognosis showed him with a long-term prognosis, and my 
relatives were following the course of care that was 
recommended to them, so they are doing everything they can for 
him, and I am sitting here looking, going, this makes no sense 
at all, and I am not a medical professional, but I hope I have 
a little common sense, and so how do we help the medical 
community? Everybody surrounding these kinds of decisions, how 
do we help them to take a breath and just say, ``You know what? 
This may not add up right now?''
    Dr. Gawande. For me, as a surgeon who made those choices 
all the time and felt like I was doing badly, I did not know a 
way out of that box. The family is in front of you, you have 
got a bad situation, and the only way I understood how to frame 
it was to say, ``Do we do something, or are we just going to 
'keep you comfortable?'"
    That was about the extent of what I had learned about how 
to think about it, and what it seemed to me and to the families 
was: Do we fight, or do we do nothing? If that is the only way 
you understand the options, then it is not surprising everybody 
says, well, let's try that colon surgery as a last-ditch effort 
because you would not do nothing for somebody, would you?
    When we have changed it--and this was the paradigm shift 
for me--to ask: What are we fighting for? What matters to you 
besides just surviving? What matters to you about why you want 
to survive? What is it you want to be capable of doing? What 
would happen?
    It ties into what Amy had to say, that when those tough 
choices came, now I was on the son side. My father, himself a 
surgeon, had a brain tumor that was in his spinal cord and 
brain stem, and he had made clear from our conversations that 
for him priority one was he wanted to keep doing surgery as 
long as he could, and then when that is not possible that he 
could be at the family dinner table, having conversations with 
his family and friends because he is an incredibly social 
person, and that was the definition of life for him.
    Now with his clinician, with his surgeon, radiologist, 
radiation therapist, oncologist, our goal was what can we do 
that he can still have his shot at being at the table however 
long as possible, but do not take away his ability to eat, his 
ability to be at home, do things that would take that away.
    Now they could offer guidance. We had three doctors in my 
family, and we did not understand the options they were putting 
in front of us, but they could give us guidance and say, this 
is the option that you have your best chance to achieve that 
with, and that divided family is often divided because the 
unwritten and the undiscussed concept was you understood there 
was something more than survival to be fighting for. It was 
what mattered to him about a good life all the way to the very 
end, and what that looked like, and then asking the clinicians 
and the family, what do we do to give him that best good life?
    It is not either/or. It is not quantity versus quality. 
When we think about how to have those best possible days, 
people do not live shorter and often live longer.
    Senator Donnelly. Thank you.
    Thank you, Mr. Chairman.
    Senator Whitehouse. Thank you very much. This has been a 
memorable and remarkable panel hearing, and I am immensely 
grateful to the witnesses for their participation in it.
    Committee members have until Friday, July 1st to submit 
questions for the record.
    I know that my question with regard to the no hospice care 
and curative care together rule, the no nursing home care 
without a 3-day hospital stay rule, and the no home health care 
until you are fully homebound rule only got answered by Ms. 
Berman and Dr. Lally. If I could invite you, Dr. Gawande, to do 
a response for the record on those questions, that would be, I 
think, really helpful to us.
    This concludes the hearing, with my very grateful thanks to 
all three of you. You are remarkable.
    [Whereupon, at 12:26 p.m., the Committee was adjourned.]



      
      
      
      
      
      
      
      
      
      
      
      
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                                APPENDIX

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                      Prepared Witness Statements

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                       Statements for the Record

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