[Senate Hearing 112-553] [From the U.S. Government Publishing Office] S. Hrg. 112-553 EMPOWERING PATIENTS AND HONORING INDIVIDUALS' CHOICES: LESSONS IN IMPROVING CARE FOR INDIVIDUALS WITH ADVANCED ILLNESS ======================================================================= HEARING BEFORE THE SPECIAL COMMITTEE ON AGING UNITED STATES SENATE ONE HUNDRED TWELFTH CONGRESS SECOND SESSION __________ WASHINGTON, DC __________ JUNE 13, 2012 __________ Serial No. 112-18 Printed for the use of the Special Committee on Aging Available via the World Wide Web: http://www.fdsys.gov U.S. GOVERNMENT PRINTING OFFICE 75-911 WASHINGTON : 2012 ----------------------------------------------------------------------- For sale by the Superintendent of Documents, U.S. Government Printing Office Internet: bookstore.gpo.gov Phone: toll free (866) 512-1800; DC area (202) 512-1800 Fax: (202) 512-2104 Mail: Stop IDCC, Washington, DC 20402-0001 SPECIAL COMMITTEE ON AGING HERB KOHL, Wisconsin, Chairman RON WYDEN, Oregon BOB CORKER, Tennessee BILL NELSON, Florida SUSAN COLLINS, Maine BOB CASEY, Pennsylvania ORRIN HATCH, Utah CLAIRE McCASKILL, Missouri MARK KIRK III, Illinois SHELDON WHITEHOUSE, Rhode Island DEAN HELLER, Nevada MARK UDALL, Colorado JERRY MORAN, Kansas MICHAEL BENNET, Colorado RONALD H. JOHNSON, Wisconsin KIRSTEN GILLIBRAND, New York RICHARD SHELBY, Alabama JOE MANCHIN III, West Virginia LINDSEY GRAHAM, South Carolina RICHARD BLUMENTHAL, Connecticut SAXBY CHAMBLISS, Georgia ---------- Chad Metzler, Majority Staff Director Michael Bassett, Ranking Member Staff Director CONTENTS ---------- Page Opening Statement of Senator Herb Kohl........................... 1 Statement of Senator Sheldon Whitehouse.......................... 2 Statement of Senator Susan Collins............................... 3 Statement of Senator Joe Manchin................................. 5 PANEL OF WITNESSES Statement of Vince Mor, Ph.D., Florence Pirce Grant Professor of Community Health, Warren Albert School of Medicine, Brown University, Providence, RI..................................... 6 Statement of Gail Austin Cooney, M.D., Associate Medical Director for Physician Quality and Performance Improvement at Hospice of Palm Beach County, West Palm Beach, FL......................... 9 Statement of Karren Weichert, President and CEO, Midland Care Connection, Inc., Topeka, KS................................... 11 Statement of Albert Gutierrez, President and CEO, Saint Joseph Regional Medical Center, Mishawaka, IN......................... 14 APPENDIX Witness Statements for the Record Vince Mor, Ph.D., Florence Pirce Grant Professor of Community Health, Warren Albert School of Medicine, Brown University, Providence, RI................................................. 26 Gail Austin Cooney, MD, Associate Medical Director for Physician Quality and Performance Improvement at Hospice of Palm Beach County, West Palm Beach, FL.................................... 34 Karren Weichert, President and CEO, Midland Care Connection, Inc., Topeka, KS............................................... 37 Albert Gutierrez, President and CEO, Saint Joseph Regional Medical Center, Mishawaka, IN.................................. 46 Relevant Articles Submitted by Committee Members The Long Goodbye, Time Magazine, June 11, 2012................... 53 Why Doctors Die Differently, The Wall Street Journal, February 25, 2012....................................................... 63 Additional Statements Submitted for the Record The Honorable Susan Collins (R-ME), Committee Member............. 64 ADVault, Inc., Dallas, TX........................................ 66 Hospice and Palliative Nurses Association, Pittsburgh, PA........ 70 Human Rights Campaign, Washington, DC............................ 72 Services & Advocacy for Gay, Lesbian, Bisexual & Transgender Elders, New York, NY........................................... 75 EMPOWERING PATIENTS AND HONORING INDIVIDUALS' CHOICES: LESSONS IN IMPROVING CARE FOR INDIVIDUALS WITH ADVANCED ILLNESS ---------- WEDNESDAY, JUNE 13, 2012 U.S. Senate, Special Committee on Aging, Washington, DC. The Committee met, pursuant to notice, at 2:03 p.m., in Room SD-562, Dirksen Senate Office Building, Hon. Herb Kohl, chairman of the committee, presiding. Present: Senators Kohl [presiding], Whitehouse, Collins, and Manchin. OPENING STATEMENT OF SENATOR HERB KOHL, CHAIRMAN The Chairman. Good afternoon to everybody. I would personally like to thank Senator Sheldon Whitehouse for holding today's hearing. Senator Whitehouse is tackling a sensitive but very important issue today, and we thank him so much for that. We're here to discuss care for individuals with advanced illnesses. With the rapidly growing number of older Americans who are living longer than ever, we're going to face a continuing rise in the number of people suffering from chronic diseases, especially in their later years. These people deserve to have their wishes carried out when it comes to their healthcare at the end of life. But, as a recent article in the ``Wall Street Journal'' made clear, it's important for people to understand that some living wills are better than others, and even if you have one, it's possible that your wishes may not be followed. Many living wills are simply too vague or fail to cover unanticipated situations. If people are considering a living will, then they need to work out the details with the help of a qualified doctor and a loved one. In my State of Wisconsin we have excellent models of clear advance directives and health systems that adhere to patients' wishes. One such model is Gunderson Lutheran Medical Center, in La Crosse. Their written testimony submitted for the record today states 96 percent of all adult residents of La Crosse County who died had some type of advanced care plan, and treatments were consistent with the patients' wishes over 99 percent of the time. Imagine that. Models such as this need to be replicated throughout our country. It's vital for patients, their families, and our overall healthcare system. Today, our witnesses will highlight some of the best practices and discuss ways to improve our healthcare system, so that it can better serve people with advanced illnesses. As I already stated, an important part of this care is making sure that treatment decisions align with patients' preferences and goals. Nothing should get in the way of providing comfort to people suffering from advanced illnesses. Our hope is that today we will discover some additional ways to promote better patient care. Once again, I'd like to thank Senator Whitehouse for his leadership on this issue, and at this time, I turn the hearing over to Senator Whitehouse. STATEMENT OF SENATOR SHELDON WHITEHOUSE Senator Whitehouse [presiding]. Thank you, Chairman Kohl, for starting us off today with those very thoughtful remarks, and let me take this opportunity to thank you for your leadership of the Aging Committee and for the wonderful work you've done to protect our seniors from fraud and abuse, to make sure that Social Security is, in fact, secure, to address long-term care, and, of course, to address the question of end- of-life care, where your State had such a leadership role. I'll do my, like, book tour moment here, and point out that there's a wonderful book called, ``Having Your Own Say,'' that has come out of the Gunderson Health system, and a number of my colleagues will be doing a Washington conference around that book and around this issue with the coalition to transform advanced care, which is a wide group of industry and other supporters of what we need to do here. Like many of the folks who are here, this hearing is important to me on both professional and personal levels. I've been working on adding dignity and affirming choice in end-of- life care back since I was attorney general in Rhode Island, working then with Dr. Mor's colleague, Joan Teno, who brought to our attention early on that the families of people who died in Rhode Island reported more often than not that they died in pain, and of the family members who had reported that their loved one died in pain, they reported more often than not that the level of pain was severe or excruciating. And so, that gave us an important opening into trying to make sure that people were protected from unnecessary pain. The groups that we started working with, AARP, religious leaders, the medical society, Brown University, still gather, and I should salute them for just this week getting the, I'll get the name right, Medical Orders for Life Sustaining Treatment Law passed and signed into law by, I guess, your former colleague, we didn't overlap, now Governor Chafee. He signed that law into effect on Monday, this week, June 11th. And that's a victory for that group. Personally, I have had the experience of loved ones dying with great dignity, and without pain, and in a manner consistent with their own wishes and desires. And although grief always casts a shadow, the shadow of that grief, I think, is lightened by the experience being one that is dignified, humane, desired in its means, and pain free. I have also had the experience of loved ones dying with treatment being administered to them against their will, and not only is it a tragedy from the point of view of this person, who I loved very much, but it was also a lingering burden that added to the shadow of grief, that we were unsuccessful in securing her wishes, and that the machinery of healthcare took over, trampled what she wanted. This was a very, very dignified, proud, and independent woman, and she ended up dying with a ventilator tube down her throat. And we had been asked over and over again, don't let that happen. And so, it adds to the shadow of grief when people don't get their wishes maintained. So, it's really important, I think, that we take the time in this hearing to take a look at these issues to do what we can to make sure that the system is one that is akin to what was described in a 1997 report of the Institute of Medicine, a human care system, they called it. The quote, ``People can trust to serve them well as they die, even if their needs and beliefs call for a departure from typical practices. It honors and protects those who are dying, conveys by word and action that dignity resides in people and helps people to preserve their integrity, while coping with unavoidable physical insults and losses.'' Unfortunately, our system for delivering care to those with advanced and serious illness regularly fails to meet that standard. The Dartmouth Atlas of Healthcare shows that in the last 6 months of life, chronically ill Medicare beneficiaries in some regions of the country spent more than 3 times as many days in the hospital and more than 10 times as many days in an intensive care unit as patients in other regions. This regional variation overrides patient preferences about how to manage their care. As Americans live longer, we are increasingly suffering from a greater burden of chronic diseases. More than three- quarters of Americans 65 and older have at least one chronic disease, and as the baby-boomer generation ages, the percentage of the U.S. population age 65 and older is projected to increase from 11 percent of the population now, to 16 percent by 2020, and almost 20 percent, almost 1 in 5, by 2030. So, our physicians, our nurses, our clinicians have to be properly trained to not only conduct the medical miracles that we see every day in our wonderful medical profession, but also be trained to have conversations about care options, and about care goals, and about ensuring that patients can make their wishes known, and can have their wishes honored. So, I'm delighted that we have the witnesses here today. I'll introduce them specifically later on. But, Senator Collins is here. I know, from previous hearings, how deeply she feels about this. I'm honored that she has joined us, and I'd like to invite her to say a few words at the beginning of the hearing. STATEMENT OF SENATOR SUSAN COLLINS Senator Collins. Thank you very much. First, Senator Whitehouse, let me join you in commending our chairman for his leadership. I know there will be subsequent hearings before he retires from the Senate, but I don't want to let this opportunity pass by without thanking him for his leadership of this committee and all the work that he has done. And I want to thank you, Senator Whitehouse, for your interest in this hearing to look at best-practice models of hospice and palliative care for patients with advanced serious illnesses and complex care needs. Advancements in medicine, public health, and technology have enabled more and more of us to live longer and healthier lives. When medical treatment can no longer promise a continuation of life, however, patients and their families should not have to fear that the process of dying will be marked by preventable pain, avoidable distress, or care that is inconsistent with their values and their needs. Clearly, there is much more that we can do in this country to relieve suffering, respect personal choice and dignity, and provide opportunities for people to find meaning and comfort at life's end. Fortunately, also, there are some wonderful models of coordinated patient-centered care for individuals with advanced illness. In his cover story in this week's ``Time'' Magazine, Joe Klein writes about his own experience during his parents' final days. His mother and father were patients in The Fairways, a Pennsylvania nursing facility in the Geisinger Healthcare system. Both parents had multiple and complex health conditions, including dementia. Prior to their admission to The Fairways, Mr. Klein said that there was no coordination among the flotilla of physicians involved in their care. All of this changed at Fairways. He was consulted about every development or adjustment of medication. While he still characterized his parents' decline as horrific, he wrote that he no longer felt so powerless, guilty, and frustrated. He, instead, was part of a team that made their passage as comfortable as possible. And, Mr. Chairman, I would ask unanimous consent to include Mr. Klein's article in the hearing record, since it's so on point. Senator Whitehouse. Without objection. Senator Collins. On a more personal level, just within the past few months, a very close friend of mine was a patient in the Gosnell Memorial Hospice House in southern Maine. I visited her twice there, and I had the opportunity to see firsthand what compassionate, high-quality, and seamlessly coordinated care can mean for patients with advanced illness and their family. In most cases, hospice care enables dying patients to remain in the comfort of their homes, free from unnecessary pain and surrounded by family and friends. The Gosnell Memorial Hospice House, in Scarborough, Maine, provides an alternative for those individuals for whom care in their home is no longer possible or no longer sufficient. I just wish we had more hospice houses throughout the State of Maine and throughout this country. This hospice house provides a comfortable homelike setting for hospice patients and their family in which they can receive advanced patient-centered care. From pain and symptom management, to psychological and spiritual support, to actually delivering longed-for scones to accompany my friend's tea, the care at Gosnell Memorial Hospice House was always centered on the patients' needs and desires, and it is first rate. And I've seen what a tremendous difference it has made and made for my friend, and for other patients and their families. Again, thank you for having this hearing, and I know this issue is a personal passion for my colleague from Rhode Island, and it is for me, also. This is an issue that I, too, have worked for many years on. Finally, let me just end by saying the last area where we should be cutting Medicare reimbursements is for hospice and home-based care. That is such a poor decision, and I hope that's something that can unite us. Thank you. Senator Whitehouse. Thank you, Senator Collins, and I can recall sitting in this committee and hearing you speak on the subject, and having the hair on my arms stand up, you spoke so eloquently about it. I'm very glad that you're here and your passion for this is, let's just say I'm a newcomer compared to you, and I appreciate what you said. I would like to add a document of my own to the record, which is the ``Wall Street Journal'' article from February called, ``Why Doctors Die Differently,'' which was a very interesting article showing how doctors who actually know better than anybody else how the system treats people at end of life so often make the decision that they're going to opt out of that particular treadmill and go out on their own terms and with their dignity intact. So, without objection, that will also be made part of the record. And we've been joined by my distinguished colleague from West Virginia, Joe Manchin, and I would invite Senator Manchin to say a few words. STATEMENT OF SENATOR JOE MANCHIN Senator Manchin. Thank you, Senator Whitehouse. I appreciate very much your concern and your interest in having this hearing. And Chairman Kohl, thank you, again, for your courtesies as always. In West Virginia, we have the second oldest State in the nation, percentage-wise, per capita, and so it's very near and dear to all of us. And we have one of the largest homeownerships. So, independent living. Our amber is Montani Semper Liberi. Mountaineers are always free, and trust me, they truly take that to heart, especially as we grow older. When I was governor, our biggest concern we had is how do we allow people to live in the dignity and respect that they've earned all their life. I've watched so many of my friends' family members, their parents and their grandparents, their aunts or uncles that have gone into a nursing home, and truly have given up, because they've taken everything away from them. They took all their assets away and left them with nothing. And these were people that were proud making decisions all their life, helping their family, and all of a sudden everything was taken away. So, we thought there had to be a better way. When I became governor, from 2005 to 2010, we expanded more services for in-home care, assisted, to help the people live, assistance, that could live independently. We spent more money than ever in the history of our State, and I think on a percentage, more than any other State in the nation. And we have more people living at home than ever before, and people that might, otherwise, be institutionalized. So, that being said, I know this is a very tough decision. It's one that we keep putting off, especially those of us who don't want to face the inevitable that we might have to make these decisions. I have a few questions we'll go into later. I just want to make the statement that I appreciate your commitment towards helping all of us live with a little bit more dignity and respect as we grow older, but how do that as public policy. And I know the States have an awful lot of involvement, if they want to. I have been committed that you base your priorities around your values, and if you have the values of taking care of your youth, taking care of their experienced citizens as they grow older, and the veterans who have given you the freedoms to enjoy all these things, then you'll be fine. And you can't do everything, I know that, but this is a value we hold very near and dear in West Virginia. I'm so pleased to so many of you involved in the same concerns that we have, and helping us is going to be tremendous. So, I'll have some questions later. I thank you again, and I'm very proud of my State, and the things that we've done. Senator Whitehouse. Thank you, Senator. Now, our first witness this afternoon is from my home State. He's Dr. Vince Mor. He's a Professor of Community Health at the Brown University School of Medicine. Dr. Mor has been on the faculty of Brown for, believe it or not, over 30 years. I guess he started young. He has served in a number of positions there, including as director of the Center for Gerontology and Healthcare Research, and chair of the Department of Community Health. He's been principal investigator for nearly 30 different NIH research grants. He's been awarded grants from the Robert Wood Foundation and the Commonwealth Fund, as well as HCFA and the Office of the Assistant Secretary for Planning and Evaluation. His research focuses on how different models of care influence healthcare use and the healthcare outcomes, particularly for frail and chronically ill individuals. He's also evaluated policies in aging and long-term care, including Medicare funding of Hospice, an issue Senator Collins mentioned, patient outcomes in nursing homes, and a national study of residential care facilities. Dr. Mor, I extend you a warm welcome down to Washington, D.C., and I look forward to hearing your testimony. STATEMENT OF VINCE MOR, PH.D., FLORENCE PIRCE GRANT PROFESSOR OF COMMUNITY HEALTH, WARREN ALBERT SCHOOL OF MEDICINE, BROWN UNIVERSITY, PROVIDENCE, RI Dr. Mor. Thank you very much. Good afternoon, Senators. I want to thank you for the honor of speaking with you today regarding the critical needs of people who are dying and their families here in America. Actually, Senator Kohl, I could probably put everything away, because you prefaced most of my comments, as did Senator Collins. About 2.4 million Americans die each year, and for them dying is a critical event. Obviously, in the life of a family, that without appropriate medical care and support can result not only in pain and suffering for the dying person, but post- traumatic stress and complicated grief for survivors, as Senator Whitehouse indicated. My charge today is to talk about the context of dying in America. Over the past 3 decades we've made great progress in the U.S., with the expansion of hospice services and the emerging subspecialty of hospice and palliative medicine, but very important work remains to be done. Our healthcare system is still a long way from ensuring that medical care at the end of life is based on the patients' fully informed preferences and values. Successes in public health, and medical treatments, and chronic disease have resulted in tremendous increases in longevity. Over the past century the average number of years a 75-year-old can expect to live ticked up just a bit ever year. So, increasingly we encounter centenarians, the fastest growing part of the population of those 85 and over, and the older population is dying of diseases that a century ago were extremely rare. Dementia, despite not being recognized a terminal illness several years ago, is now the sixth leading cause of death in the United States, and 1 in 8 Americans 65 and over is afflicted with it. All these patients have a different dying trajectory than patients with cancer, for example. They have the same needs for symptom management. Pneumonia in a patient with dementia results in the same level of shortness of breath as it does in a cancer patient. So, based on our research and that of others, the place of care and the geographic region, you mentioned Wisconsin, greatly influence how they die and where they die. In a study we conducted of survivors of individuals who had been in a nursing home in their last weeks of life, we found that 1 in 3 reported that their loved ones experienced inadequate pain control, they did not have enough emotional support, and that they weren't treated with dignity. On the other hand, among those who died at home and with hospice services, nearly 71 percent rated the care of their loved one as excellent. Since more and more Americans are spending part of their last weeks of life in a nursing home, this has implications that go far beyond the people who live in nursing homes on a long-term basis, because they're moving through these facilities. Sadly, too often, dying persons and their families are lost in transition between acute care and nursing home. With funding from the National Institute on Aging, I have worked on a multidisciplinary research team that includes Dr. Joan Teno, to describe the pattern of transitions at the end of life amongst nursing home residents with advanced cognitive and functional impairment. We created an index of burdensome transition and found that there is a huge geographic variation in the likelihood that people experience these burdens and transitions in the last month of life. We compared Grand Junction, Colorado, and McAllen, Texas. And if you were in Grand Junction, Colorado, only 13 percent of the dying patients had one of these burdensome transitions in the last month, whereas more than twice as many in McAllen, Texas, had them. In Wisconsin, it's almost as low as in Grand Junction. High rates of transition from one medical care setting to another result in medical errors, problematic care coordination, duplication of services, and relocation stress for these frail older persons. So, what I'd like to do is make a few recommendations. First, it must be clear that a single healthcare provider or healthcare system should be accountable for an episode of care. We should no longer tolerate the sentiment that some have expressed, ``out of my hospital, no longer my responsibility''. Hospitals, nursing homes, and other healthcare providers must become partners in order to decrease inappropriate healthcare transitions, particularly in the last month of life. Financial incentives, whether it's bundling payments, or some other mechanism, have got to be aligned to make this possible. Without financial and clinical accountability, dying patients and their families will continue to be lost in transition. If we do this, we have to make sure that incentives to go in one direction aren't countermanded by having other incentives going in the other direction of denying care. So, we have to ensure that managed care or other organizations are held accountable for providing care consistent with patients' preferences. Currently, in 2012, Medicare is the predominant payer for older populations. The fee-for-service system that we have in place now, which made sense in the 1960s when we designed it, to increase access for older people who didn't have such care, doesn't make sense now. Fee-for-service payments, create separate silos for funding each type of provider such that they are only concerned with what goes on inside their walls. We believe it's essential to move the current system towards increased accountability, whether it's managed care or accountable care, something has to be done to bring these together. Otherwise, I worry that frail elderly individuals will continue to be transferred from one provider to another, like so much flotsam and jetsam. Thank you very much for your time. Senator Whitehouse. Thank you, Dr. Mor. Our next witness is Dr. Gail Austin Cooney. She is the Associate Medical Director for Physician Quality and Performance Improvement at Hospice of Palm Beach County, in Florida. In 2005, Dr. Cooney was diagnosed with metastatic ovarian cancer, which recurred in 2010. Both times, Dr. Cooney received curative and palliative care concurrently. Today, her cancer is, again, in remission. Hospice of Palm Beach County is a non-profit hospice facility that provides care for approximately 1,200 patients daily, in a range of settings, including private homes, hospitals, nursing facilities, and assisted living facilities. In 2009 to 2010, Dr. Cooney was president of the American Academy of Hospice and Palliative Medicine. In 2012, she received that organization's Josephina D. Magno Distinguished Hospice Physician award. Dr. Cooney received her medical degree from the Mayo Medical School, completed residencies in internal medicine and neurology at Emory University, and completed a neuro-oncology fellowship at Memorial Sloan Kettering Cancer Center in New York. Dr. Cooney, we are already wowed by you and look forward to hearing your testimony. [Laughter.] STATEMENT OF GAIL AUSTIN COONEY, M.D., ASSOCIATE MEDICAL DIRECTOR FOR PHYSICIAN QUALITY AND PERFORMANCE DEVELOPMENT, HOSPICE OF PALM BEACH COUNTY, WEST PALM BEACH, FL Dr. Cooney. Senator Kohl, Senator Whitehouse, and other distinguished members of the committee, thank you so much for having me here to speak today. As was discussed I spent most of my professional career in the field of hospice and palliative medicine. And Senator Collins, when you mentioned patient-centered care, it made me realize that that is why I have been so happy in my field, because that's what I found there. But I'm going to mostly talk today about my personal story, because a few years back I had an unusual meeting of my personal and professional lives, and I know that I would not be here today to speak to you without the support of my palliative care team. I'd like to give you a definition of palliative care, because it's often very misunderstood, both by the general public and by healthcare providers. Palliative care is specialized medical care for people with serious illness. This type of care is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness, whatever the diagnosis. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses, and other specialists who work along with the patient's other doctor, to provide an extra layer of support. Palliative care is appropriate at any age, with any diagnosis, at any stage of the illness, and can be provided along with curative care. For me, the key messages in my story are that focus on quality of life, while pursuing curative treatments, because that's what happened to me. In 2008, I was actually developing a palliative oncology program in West Palm Beach, Florida, where I live. Things were going well. We were due to open in August of 2008. But on July 27th, I walked into the office of one of the oncologists that I was working with--you know, I'm a doctor, I didn't make a doctor's appointment--I just walked into the office, and I said, ``People have told me that I'm bloated.'' And she looked at me and said, ``Not bloated.'' I had an ultrasound. I had a CAT scan. And by that afternoon, I had been diagnosed with stage IIIC ovarian cancer. That's the stage at which most women are diagnosed with ovarian cancer, because it is almost always diagnosed late. But I don't have time to tell you all about that today. Two days later, I had surgery. It is difficult surgery, because of the way ovarian cancer spreads. It is like you take a black velvet painting and throw a carton of yogurt at it, and then go in and try to clean it up. The surgeon does the best he can, but there's still stuff stuck in between all of those ``little black velvet fibers.'' And so the second part of treatment, after the surgery, is intraperitoneal chemotherapy. And what that means is that they take some of their most toxic drugs and dump them right into your belly, with the idea being that it will get right up against those tumor cells, up in the black velvet, and be able to get rid of them. It's very toxic therapy. Only about 40 percent of women who begin a course of intraperiteneal therapy are able to complete it, because of the toxicities. But of those women that do complete the therapy, a third live over a year. And for ovarian cancer, that is good. I decided I wanted to be one of those third. But if I was going to do it, I had to make sure that I could tolerate the side effects of the treatment, and that's where I knew to ask for the help of a palliative care team. And so I actually became one of the first patients at the palliative program I had just been setting up. It's a strange life. My team worked on the nausea and the vomiting; the chemotherapy is very toxic that way. I used medications. I had acupuncture. The other really difficult problem is the communication between family members. I can talk to my patients about advanced illnesses. But, talking to my husband and my children, I needed guidance. I worked with a counselor on those issues. And I hung in there. On Christmas Eve 2008, I had my last treatment. Two months later, I was in remission. I started feeling better. My hair grew back. I even started working part time. But even though I was feeling well two years later, in 2010, the cancer came back. I had no symptoms this time, but it was back. And the choices for treatment this time were even more complicated. On initial diagnosis, it is somewhat straightforward what you do first to treat cancer. For recurrences, they often don't have as much data. And even though I speak doctor pretty well, pretty fluently, I needed somebody to help me talk through what my goals of care were, as I looked at a whole new range of toxic therapies. Again, I needed my palliative care team. I ultimately had chemotherapy. After that, I had surgery at M.D. Anderson Cancer Center, in Houston, Texas, where I also accessed their palliative care team. It was a tough year. But, I'm happy to say that once again my disease is in remission, and I have been left with a real passion to share my story, because I think it is so important that people understand the benefits that palliative care can have when it's used from the time of diagnosis, because for many serious illnesses, the treatments are difficult. And for me, my palliative care team helped me to make the side effects a priority, They made sure that treatment of side effects was a priority. They helped me to talk about the issues that otherwise would have just been underlying stressors that would have made it more difficult to heal. I really want others to have access to this kind of care, because as difficult as my experience was, I had a lot of things going on my side. I have a husband and a family who love me and stood by me. I have good health insurance, and I didn't have to bankrupt my family in order to pay for my medical care. I had access to superb palliative care and I knew to ask for it; because even where I was, in some really good institutions, I had to ask for palliative care, and most people don't know to ask. People with serious illness, me now, and someday all of us, we need your help to make this kind of care, this added layer of support, available to all Americans, so that they can have an experience with serious illness that is as healing and as hopeful as mine has been. Thank you so much for listening to my story. Senator Whitehouse. Thank you so much, Dr. Cooney. Our third witness is Karren Weichert. She's the President and Chief Executive Officer of Midland Care Connection, in Topeka, Kansas. Over two decades, Ms. Weichert has transformed Midland Care from a volunteer hospice program into an integrated care delivery system that offers services across the continuum of care. Under her leadership, Midland Care opened the first hospice inpatient unit, the first hospice-sponsored adult care facility, and the first hospice-sponsored PACE program in Kansas. In addition to her work at Midland Care, Dr. Weichert has served two terms as national director for the National Hospice and Palliative Care Organization, and currently serves on their governance committee. She also works with Leading Age, as a member of the Hospice Home Health Taskforce, and is a board member of the National PACE Association, and chairperson of their Public Policy Committee. Ms. Weichert, I appreciate coming in today. We're delighted to hear your testimony. STATEMENT OF KARREN WEICHERT, PRESIDENT AND CEO, MIDLAND CARE CONNECTION, INC., TOPEKA, KS Ms. Weichert. Thank you. Chairman Kohl, Senator Whitehouse, and members of the committee, I am really delighted and quite honored to be with you today. I am Karren Weichert, with Midland Care Connection, Topeka, Kansas. And as the Senator said, we started with the hospice over 30 years ago, and now have developed into a full continuum of care services to address the needs of those with advanced illnesses. Our continuum today includes not only hospice inpatient care, as well as homecare, but it also includes adult daycare and residential care, home health, home support, a palliative care program, and PACE, Program of All Inclusive Care for the elderly. I want to tell you a story about a gentleman who was in our care a couple of years ago, Denzel Ekey. And Denzel came to us as a 78-year old man with Alzheimer's disease and myasthenia gravis, which affects the muscles in his arms and legs, and eventually his throat. He was cared for by his wife, Mary, in the home, and she was doing an outstanding job of that, but she needed some help. And so she invited us into help with his personal care, bathing and such. We did that for a short time, and then he began to coming to our adult daycare. As his care needs continued to increase, and it began to be more difficult for her to provide that care, he was enrolled in our PACE program, whereby we could wrap services around him, coordinating not only all of his medical care, but all of the supportive care needs that he had while remaining in his own home. Eventually, because of his disease process, and some of the things that his wife encountered, he had to move into our residential center, and we were delighted that we had that option for him, because there he was still connected with his PACE team, the residential team was there to provide him that 24/7 care that he needed to maintain, and then at some point, when the PACE team recognized that he actually was in the last few months of his life, they actually invited the hospice colleagues to be involved in his care as well, because there were some complexities to his care that they needed assistance with the symptom management of his disease process. The hospice team also lent a hand to Mary, and she was a devoted wife, and she needed help just dealing with the fact that she was going to be losing this man that she had loved all these years. She came every day to the residential center and sat by his side. And, in fact, she was with him on that last day, Christmas Day of 2010, and he died. I tell this story, because Denzel was so near and dear to us as an organization, because he sat on our board over 25 years ago when we were just a hospice, when we had a dream to develop into something more, and he was one of those people with courage and conviction that stepped out and said, yes, I think we need to do this. We need to make some decisions that can move our organization forward and serve more people. And we did that. Little did he know that we would one day be serving him. So, we were honored that we had that opportunity. Denzel is also significant, because he's one of those over age 65 afflicted with Alzheimer's that we've heard. And Alzheimer's today is one of the top 10 diseases in our country, but it is one for which there is no prevention, there is no cure, and there is no way to really successfully prevent the progression of the disease. So, it's very significant that we should talk about Denzel today. I also want to talk about how does all of this care happen. I believe that as we look ahead at how we might be forging a new way to provide care, and we've heard some really poignant and significant statistics today about how we can provide care to those with advanced care illness. I think it's important to remember that it needs to be provider based, and by provider based, I mean that it needs to be an entity who is responsible not only to coordinate the care and to manage the care, but to provide the care. It also needs to be interdisciplinary in nature. It is extremely important that the whole team be involved in the care of a significant illness, because it is not just a physical process. It affects the whole person, and the interdisciplinary team comes together, as professionals, to work on all of the different elements that might be affecting the patient through this process. It also needs to take into account that one person has the disease, but the whole family is going through this process, and we certainly need to build into our system ways to support those caregivers, because they are so critical to the effective care of individuals who want to remain in their home. And lastly, I think that those organizations need to have financial responsibility and be accountable for the care that they deliver. We have in this country two programs, both PACE and hospice, who have been doing this for a number of decades now, and they are capitated systems. They're given a set amount of money, and then they are required to provide all of the care that the individuals entrust to them must have. And they do, and they do it quite effectively, and they do it with a high satisfaction rate throughout our country. Today, we are challenged with silos. Silos in our healthcare system, providers not communicating very well with each other, and patients caught up in those silos. We also have silos in our regulatory entities, and we have regulations that are quite antiquated, and not effective in today's system, because today we have ways to communicate that we didn't have 20 years ago, when many of those regulations were developed. We have electronic medical records. We have real-time reports about what's going on with our patients. Much more effective ways to serve them, and yet, many times, we are mired down in all of the regulatory things that we have to meet. If we are to serve people effectively, we need to eliminate some of those silos and mesh those together, so that our focus can be really on delivering that care. I think in this country these two programs have also been effective for three reasons. First of all, because they both developed around helping patients to stay in their home, stay in their home, where they want to be. They also developed with those patients as a part and as a center of the care, involving them in the discussions about what was happening to them, educating them about the process of their disease, and having them have input into what was going to happen. They've also utilized that interdisciplinary team, which is so important, because we understand in hospice and in PACE that suffering is not just physical pain. It happens to us in totality, and so we have to learn to serve that total person. And we've also learned that, I think the reason that hospice and PACE have been so effective, and probably one of the key things that have cut down on ER visits and unnecessary hospitalizations is because they are responsive. They are available 24/7. They answer that telephone. They calm those fears. They go and sit by the bedside. And they make those home visits at 2:00 o'clock in the morning, either the physician, or the nurse, someone is going out there. And that avoids those unnecessary stays in the hospital. I will tell you, we don't like people to go to the hospital. A couple of reasons. We're financially responsible for that. That's one of them. But, you know what, it goes far beyond that. Hospitals are not great places to be. If you've ever been to one of them, there's a lot of sick people there, and we have a very frail population that we then are exposing to a lot of other things. We don't want them to go to the hospital. And it's very disorienting. We want them to be at home, if at all possible. I encourage this committee and Congress to use these programs as the models. We have a lot of new innovative programs being talked about out there today, but we've got two programs in this country that have been around, that have been effective, and are underutilized. And I would submit that we need to build on that which we know is effective and that which we know has those components that people are asking for today. I appreciate the opportunity to be with you today. I think that we have a big charge ahead of us to develop a program and in a healthcare system that's going to serve people with advanced illness. It needs to be seamless. It needs to be coordinated. And it needs to have the patient at the center of the care. Thank you. Senator Whitehouse. Thank you. Well, we appreciate the opportunity of you sharing your experience with us. So, thank you very much, Ms. Weichert. Our final witness is Albert Gutierrez. He's the president and CEO of Saint Joseph Regional Medical Center, in Northern Central Indiana. Mr. Gutierrez joined Saint Joseph in 2010. It's a multi-hospital, non-profit healthcare system that includes acute care hospitals, a rehabilitation center, 20 in- network physician practices, and several community health centers. It is a ministry organization of the fourth largest Catholic healthcare system in the country, Trinity Health. Saint Joseph has been recognized as one of the top healthcare systems in the country, having been named one of the top 15 hospital systems in the nation by Thomas Reuters. This year ``Modern Healthcare'' magazine named Mr. Gutierrez one of the country's top 25 minority executives. Prior to joining Saint Joseph, Mr. Gutierrez was president and CEO of Shore Memorial Hospital, in New Jersey, where he was employed for 25 years. Mr. Gutierrez earned his bachelor's degree from Thomas Edison State College and an executive MBA from Saint Joseph's University. Me. Gutierrez, we are delighted you're here. Please proceed with your testimony. STATEMENT OF ALBERT GUTIERREZ, PRESIDENT AND CEO, SAINT JOSEPH REGIONAL MEDICAL CENTER, MISHAWAKA, IN Mr. Gutierrez. Thank you very much, Senator. Distinguished members of the committee, colleagues in healthcare, members of the public, and my fellow panelists, for the purposes of these proceedings, my perspective is one of a healthcare executive. While we have angels in the architecture, saving our patients in hospitals, I'm the direct intermediary to the funding sources and the Federal Government. We believe that there are specific structural elements related to empowering patients and honoring individual decisions in care. The first prescription is a prescription of hope for the suffering. Part of the wide variation in treatment modalities for suffering and its related expressions is the wide variability in individual's tolerance to suffering. The tolerance of the patient, but also the tolerance of the loved ones who are watching the person suffer. Suffering occurs when one is deprived of clinical and emotional support. When we observe suffering in another human being, God gives us all the remarkable reflexive response to preserve life. I'm sure the committee has witnessed this behavior in the selfless heroism of our soldiers on the battlefield and the individuals who rushed to help those who are injured or afraid at Ground Zero, among innumerable other examples. This instinct to help a fellow human being is remarkable. Countless times every day it occurs in our healthcare facilities. This natural instinct to help and heal arises in compassionate caregivers who receive the suffering at our doors. Unfortunately, in pursuit of a noble goal, relief of suffering, we frequently offer ineffective, costly, and painful procedures, sometimes to the detriment of the economic stability of our own institutions and the economic instability of our country. We actually know what patients want in advanced illness. They want us to minimize their pain, reduce the burden on their families, and give them some control over what is happening. Caring for the body, mind, and spirit of every person we touch is core to our mission, and is embedded in the walls of every health system within Trinity Health. As a ministry of the Catholic Church, we believe that every human life is worth living. Palliative care reflects our commitment to respecting the dignity of every human person. We believe palliative care to be a prescription of hope for suffering. So, that being said, what is a prescription of hope for society? Good medicine is ethical medicine, and good medicine yields high-quality, cost-effective outcomes. What is truly amazing about palliative care is that while it alleviates suffering for the patient and family, it does improve the quality of care and reduce costs. We know that the extensive use of healthcare resources does not enhance the quality of life at the end of these precious lifetimes. Patients should know they have a choice. They have a right to forego costly, burdensome, extraordinary, or disproportionate interventions. So, what happens? In order for a patient to make sound decisions within those parameters they must be engaged in the conversation. Senator Whitehouse, as you mentioned earlier, when we have failed the request of patients, what is it that has occurred? I can only articulate my conversation with my father, who loved three things: His family, his God, and the New York Yankees, who had a son who is the president of a healthcare system, who had access to some of the best physicians and treatment modalities in the world. And he was very specific to me. He said, ``Son, I'm finished. I've done everything that I've wanted to do in life. Do not use any of your abilities and skills to save my life. I am ready.'' So, we sat down and we documented the event, and we put the information, and I gave it to my parents, and it was all set. My father died in my sister's arms, but still I get the call from my sister, as the ambulance is rushing to the house, ``Where are the documents?'' And we could talk about solutions for that a little bit later. But, in order for a patient to make sound decisions within those parameters, they must be engaged in that conversation. As a faith-based institution, we also believe in the prescription for hope for each precious life. At the core of our prescription for hope is establishing that conversation and making sure that we engage the role of our faith-based agendas as we all see them as individuals. It is even made more difficult when people have no hope and have no particular perspective on faith, and still, health systems need to be a part of that conversation. At our facility, a 60-year-old man who had suffered a massive stroke showed up alone at our emergency room. After CAT scans and other examinations, the doctors agreed that that massive stroke was so damaging that he would not recover. Someone called the only number on his cell phone contact list. It said, ``Boss.'' And there were no other contacts. Our legal staff exerted every effort to locate next of kin, even getting permission to search his apartment for an address book, to no avail. The doctors had determined that the curative line of care was not possible, and his boss was not willing to take the responsibility of serving as his guardian. We convened our ethics conference, and based upon our proceedings, we brought our recommendation to the courts, and a judge appointed a guardian. After extensive discussion, the guardian and the doctors clearly understood the medical choices. And in the best interest of the patient, extraordinary interventions were ceased and he was moved to hospice care. There, the guardian visited him on a regular basis. The one documentation of his wishes that we did find was he wanted to identify himself as an organ donor. Saint Joseph's Regional Medical Center, upon his passing, met his wishes, paid his funeral expenses, and had him buried in a local cemetery. The patient died with dignity, with his desires being met. So, in light of my closing recommendations, as a Catholic institution, we are committed to caring for every person who comes through our doors and to make sure that that commitment is sustainable. We have long encouraged these conversations. Going back to the Civil War, the Sisters of the Holy Cross, in South Bend, took care of the injured and dying on both sides of the armed conflict. So, therefore, first, we need to ensure that palliative care programs and providers are in place across our country, and are well funded. Second, we need to shine a light into end-of-life care as a societal issue to be addressed. No longer should it remain in the shadows. It's no longer enough just to ask if there is an advance directive. It's more for everyone to understand what's in the directive. To that end, recently, our community needs assessment identified a very simple tool. It's called ICE, in case of emergency. And where do you find ice? In a refrigerator. So, I've learned with discussions with every family member to put our documents in a tube and put them in the refrigerator, and put a symbol on the door. And that's part of the deployment that we'll be having in our particular community over the next year. Too long has our country shied away from these difficult conversations. Third, we need to establish the guarantee that no one dies alone. Just as we saw with the end of life care given to a stranger, no one should face that end of life alone. My last directive comes to us as a people from a letter of his Holiness, Pope John Paul, to the elderly in 1999. A letter that should be given to every senior in the country. That's pretty specific. And Pope John closes in a way that I should close today. And he writes, ``And when the moment our definitive passage comes, grant that we may face it with serenity, without regret for what we shall leave behind, for in meeting you, after sought you for so long, you'll find God. We shall find once more every authentic good which we have known here on earth, in the company of all who have gone before us, marked with the sign of faith and hope.'' And I'll get to see a Yankee game someday. Thank you very much. Senator Whitehouse. Thank you very much, Mr. Gutierrez. That was wonderful, moving, impressive testimony from all of you, and I thank the panel so much. I will turn first to my colleague from West Virginia, Senator Manchin, whose schedule is pressing, and allow him to ask his questions. Senator Manchin. Thank you, Senator. First of all, thank you all for moving testimonies, and I appreciate it very much. Mr. Gutierrez, I would assume that your sister found the document, because your father died in her arms. Mr. Gutierrez. Yes. When she called me, I said, ``It's in the can on the shelf in the closet. And it was appropriately deployed, and yes, he died comfortably in her arms. Senator Manchin. And your recommendation is, is that we go for ice. Is that what you mean? Mr. Gutierrez. Absolutely. Go for ice in the refrigerator, and that's where the documents are, unless you're a member of the younger generation, we expect there will be an app to address that. Senator Manchin. I assume there would be. I was thinking about that, thinking that, you know, with Facebook and everything else. Mr. Gutierrez. You know, it's part of the overall recommendations. You'll see that coming from our South Bend study over the next few months. Senator Manchin. Dr. Mor, I think in your testimony you said that people receiving hospice were receiving it too late, and I assume that we're keeping them in the hospital longer than what they would desire, or what good we can do there. And we should be getting them back into the care of their loving home, and have hospice intervene. How do we do that? Is it just the rigmarole or it's the business of business, I guess I could say. Dr. Mor. It's complicated. I think one of the issues is that not enough people have the conversation with their doctor about their prognosis early and often. I was really delighted that Mr. Gutierrez brought up this issue of the conversation. It's also, as Karren mentioned, about the lack of continuity. People bounce from one place to the other, and the system just proceeds. It's also because there are these silos of both payment and accountability. Over the last decade, we've seen a doubling of the number of people who actually use the Medicare hospice benefit, but, there's also been a very substantial increase in the proportion of people who only get 3 days of hospice before dying. And half of those people have a prior hospitalization, including intensive care. Senator Manchin. How long could hospice care, I mean how long could it be delivered? Dr. Mor. Well, if people, for instance, are arriving 10, 15, 25 days before, it's not a building, but in care, then there's a reasonable process to deliver needed support and services. Even earlier, if there's advanced time, and depending on the nature of the disease, there's just more time to get the mix of services and symptom management right. And that's what's important. Without the integration, without the conversations, there are too many people who fall in the cracks. It might be done properly in Wisconsin, or Minnesota, but it's not done properly often around the country. Senator Manchin. And Ms. Weichert, a Medical Association study found that caregivers have access to patients' living wills as infrequently as 16 percent of the time. How does your organization make sure that we have care teams that understand the goals and wishes? I go back to the early 1980s with my grandmother. And I had my grandfather die suddenly of a heart attack, and my grandmother, she died at the same time trying to help him. But, then 9 days had passed, and she was on life support. And we just knew that she wouldn't want to live a life like that, and eventually the whole family had to make this decision to make the hospital understand that's what we know that she would have wanted. But, 9 days had gone by. I mean today's a different day. I understand that. How do we make sure? I heard that there were cases where the hospital still doesn't believe, and they still continue to do things when there's not a document. Ms. Weichert. Well, I would say there's actually two things that I'd like to address in answer to that question. The first one is that in our care continuum, we have different touch points, where we have access to the patients and to the families, and we can have those conversations. The earlier someone accesses care, the easier it is to have those conversations. And the second thing that I would say is that I'm a two- time cancer survivor myself. I know how tough it is to have that discussion when you are sick, when you are diagnosed. It is important for us to encourage our families to have those discussions much earlier, so that the other extended family knows what their wishes are, knows what they would like to have happen to them. So, if a time comes, as your grandmother, when she can't speak for herself, the family is confident that they're doing the right thing. Senator Manchin. Right. Ms. Weichert. One of the things that Mary said to me in my story about Denzel Ekey, she said, ``Denzel and I had discussion long before, because we did not want our children to suffer through wondering if they had made the right decisions. So, we had that discussion, and we put those papers in place, so everyone would know what our desires were for our end-of- life care.'' Senator Manchin. Thank you. My time is at the end, and Dr. Cooney, I enjoyed your testimony very much, and God bless you, and I wish you the best. And I know that better educating the patient is going to make a better informed decision. What would you say, not everyone's going to have the opportunity to have the access you've had or the care you got. Dr. Cooney. How do we improve access? Senator Manchin. Yes. You had specific care, which was pretty extensive, I understand. Dr. Cooney. Because I knew to ask for it. Senator Manchin. That's it. Now, we're talking. Dr. Cooney. You know, I think we need to educate the public, and I think we need to educate the healthcare providers, both, to see this as an integral part of medical care. Senator Manchin. Thank you, Mr. Chairman. I appreciate it very much. Thank you. I'm so sorry I have to go to another meeting. Senator Whitehouse. Thank you, Senator Manchin. We're delighted that you could be with us. I get you alone, now that everybody is gone. This is great. It means I don't have to obey my time limit. [Laughter.] Senator Manchin. I'm kind of afraid to leave. [Laughter.] Senator Whitehouse. First, let me just thank you all again. This was a really superb panel, and I think it helps us make a wonderful record for pursuing action in this area. As I've been listening, I've been sort of trying to put the problems into different categories, and I've summarized the four categories as the transition, problem, lost in transitions, as Dr. Mor said, failures of directives, whether because they don't exist, or because they're not clear, or because they're not honored and given effect. The treatment of pain, and palliative care, and the conditions surrounding the underlying illness itself, and the question of family support and confidence in the proceedings, I guess. Dr. Mor, you spoke very eloquently about the lost in transitions problem, and Ms. Weichert, you touched on it as well. I just wanted to let the other witnesses have an opportunity to touch on the transitions problems, if they cared to, where the handoff failures happen, and what we can do to minimize those transitions, where they're not absolutely necessary. And I'll put an asterisk on that question, because one of the things I'm pushing the Administration very hard to do is to take some of the meaningful use health information funds and create a pilot program, where qualified meaningful users will get the benefit of participating in the pilot, if they connect with nursing homes, which are not legally qualified, meaningful users. And that, I think, might help with some of the transitions that might be unnecessary. But, any thoughts that any of you have on the transition problem, I'd love to explore. Mr. Gutierrez. Mr. Gutierrez. Yes. Actually, at our facility we've narrowed it down to the specific document. We have a fully engaged, fully compliant electronic health record meeting all the requirements of meaningful use at this point. But, it's not the same standard that's applied for long-term care. So, we've identified the problem. We have it down to one document, and that is the admission discharge and transfer document and its contents, and having the standards established that they all specifically address a full complement of understanding the medications that the patients are on, the clinical picture prior coming to the hospital. And if we were able to get more of that information on a consistent basis, the first orders that are written in the emergency room will be a much more effective bridge, instead of starting all over again. And that industry currently is underfunded significantly nationally to develop these electronic health records. The second area, a bigger concern, with the---- Senator Whitehouse. Just to jump in on that, in the future, my suspicion is, if we can get a pilot rolling on this, it would surely prove that it actually saved money, and then we could extend the meaningful use program to nursing homes in line with the pilot without having to go and find a pay for, because, frankly, it would pay for itself in the improved outcomes and less unnecessary wasteful care. Mr. Gutierrez. Yes. You are correct. What we've been finding in all the wealth of data that the electronic health record requirements have been giving us, that we're finding more and more opportunities to reduce costs. The data is actually magnificent. But not having access to the wealth of data that's created in that industry eliminates a lot of the expense in those first 12 hours of care, in particular in the emergency room. So, I think your suggestion is something that we, as an industry, at least within our healthcare system, would find something that would help drive better communication, even within our own system. Dr. Cooney. I'd just like to mention one of the ways in which a palliative care program can also help with transitions of care, because what they often do is serve as a communicator between the silos that exist in our healthcare system. I remember one patient on whom I was asked to consult on who was in the ICU and each doctor was addressing their own little body system. You know, their own little body system, wasn't doing too badly, but the woman was dying. I sat down and I wrote my note. I wrote, ``Patient dying.'' One by one, they all came by and wrote, ``Agree with above. Will stop - whatever their treatment was.'' Sometimes palliative care can help to serve that role of facilitating communication between the silos. Senator Whitehouse. The issue of failure of directives is one that I think is particularly concerning. First of all, we have the societal failure that many people don't have directives. And unfortunately, the whole fantasy about death panels emerged out of a very sensitive amendment proposed by actually a Republican colleague of mine, to simply provide for folks on Medicare to have a discussion with their doctor about what they wanted, so you could begin to make sure that there were, in fact, directives, and your wishes were, in fact, expressed and on record. I guess things can turn into strange political transmutations. But, it was a very, very sensible point. So, that's the first problem. Then, you get to the problem of, as you said, Dr. Cooney, speaking doctor. These are very often written by lawyers, and they don't translate readily onto the hospital floor. And then in the case in my family that I referred to, everything had been done, everything had been done properly, but unbeknownst to this wonderful woman, EMTs were forbidden to honor anything in the State where she died. You could have your priest, and your lawyer, and your accountant, and your family, and your advance directive, and your living will all right there, and they would come and resuscitate, because that's what they're obliged to do, unless you had a magic ribbon on your wrist. But, nobody had told her that she should have that magic ribbon on her wrist, plus she was a lady of a certain amount of elegance and style, and the last thing she would want was some ribbon on her wrist all day in and out. So, there would have been a brawl about it, if that had been the option. So, there are all these failings in the existence of them, in the comprehensibility of them, in the actual effect, when people think they've got them squared away. And Mr. Gutierrez pointed out, it's no good if you can't find it when you need it. So, what are the best practices you've seen out there for coping with this? I know Gunderson Lutheran has worked hard on this. What do you see as best practices with respect to preserving and honoring wishes? Dr. Cooney. I was really excited by the legislation that came out that eventually got shot down by the ``death panel'' people. I've always worried that attorneys write advance directives. The advance directives get filed away with the will. Nobody ever looks at them, and nobody knows what they say. In reality, it should be healthcare providers, ideally, the physician, but at least a healthcare worker, who talks through these issues with each person, because healthcare providers know the kinds of situations that that person is likely to run into. The kind of complications I'm going to run into are different than the kind of complications that you're going to run into, because I have specific medical conditions. And an advance directive can be specific to those sorts of issues. The advice I give everyone is to talk about their wishes with everybody they can, so that you have as many people as possible who know what you want, and will stand up for you. It doesn't get rid of the problem with the EMTs. I've seen that myself. Senator Whitehouse. Yes. Dr. Cooney. The more people who know what you want, and that it is really what you want, and not something you just wrote down on a piece of paper in your attorney's office, when you were just signing documents, I think the better the chance that someone will stand up for you and make sure your wishes are enforced. Senator Whitehouse. Well, that's a very helpful thought. Now, on the question of palliative care and treatment of pain, are we seeing better outcomes than we did when Dr. Teno did her first work, and what can we do to improve further? I mean it's conceptually possible that we could have no one die in pain in the country, is it not? I know that in the case of my father, he felt very good about all of this, both because he had a nebulizer that was delivering his painkiller to him whenever he wanted it, and it was very effective. And he controlled the button. So, he found he actually didn't need it very much. He'd been a marine. He'd been, you know, he was a pretty tough guy, but he really wanted to know that if he was going to need it, it was there for him. And so, that was very successful. And then, also, he had confidence in the hospice nurses around him, that if something happened, he could cope. So, his anxiety level about the whole operation, even though it was his imminent death, was actually pretty low. He felt he was in the hands of capable trained professionals. He knew he had a way to deal with pain. Let's bring on the rest of it. He was able to face it with a lot of calm. And I think that actually helps in the pain circuit as well. But, Dr. Mor, you've done a lot of looking at this. What do you---- Dr. Mor. So, others could chime in, but my mother died here in Washington 33 years ago of cancer, and as was the practice in those days, she was down at the end of the hall, as far away from the nursing station as possible, and in pretty constant pain. Things have improved dramatically since that time, with patient-initiated analgesia, and a general sensitivity at all levels, and in most of the specialties in that medicine. It's not to say that it's always done right, or it's not to say that it isn't sometimes done excessively, because for every action, there's sometimes reaction. But the constant awareness of pain, and the reported pain levels for people who are in their final weeks or months of life has dropped empirically, dramatically. There are still other issues to deal with, but I think that our attention to pain as a sort of a sixth vital sign, as it were, has actually been very, very effective over time. Senator Whitehouse. It's actually reported in Rhode Island now as a vital sign. Dr. Mor. It's reported as a vital sign. It's actually being reported as a quality measure for most hospitals, for hospices, for nursing homes, and for home health agencies. And whether the reports are exactly right or not right is not the issue, but it means everybody is attending to it and trying. Senator Whitehouse. Yes. Ms. Weichert, would you agree? Ms. Weichert. Well, I do have a comment about that. Senator Whitehouse. Please. Ms. Weichert. Thank you for asking me, but, again, isn't it interesting how we're all intertwined with our personal experiences. But, my grandson was diagnosed with Ewing Sarcoma, which is a cancer that hits children. And he was served in a regional hospital that just prior to his surgery, where they were going to amputate his leg, after a year of very aggressive chemotherapy, he was in significant pain, significant pain, and they couldn't seem to get it under control, nor did they, in my opinion, try hard enough. And so, I asked our palliative care team if they would become involved. And, in fact, they said, ``Well, there is a palliative care team in that hospital. Why don't we call them?'' And so, our physician called that palliative care team in the hospital, where he was, three floors down, and they were appalled that they had not been called before. The concern is, because he was a child, we didn't want to overmedicate him. Oh. Well, did we want him to hurt? And so, within a couple of hours they had his pain under control. Thank goodness. So, I think that there is still a lack of acceptance, even among other healthcare providers, about what palliative care is and what it can provide in quality of life to the patient. Senator Whitehouse. It strikes me that there are circumstances in which, although we silo conceptually curative care from palliative care, that there are nevertheless circumstances in which well-delivered palliative care has a significant curative effect. Is that the experience? Ms. Weichert. Oh. I would say absolutely, Senator. And I think that they definitely go hand in hand. Senator Whitehouse. Okay. That one was unanimous. And the last point that I'll touch on is this question of family support. Even to the extent that we're getting better at treating the patient with advanced illness, and trying to improve the directives that help that patient control how they'll be treated in their advanced illness, particularly in a very advanced illness, the family tends to be involved. You've touched on the question of when there's no advance directive, then there's confusion, there's family stress, different family members are disagreeing about how much care to do, and you're in for a real mess. I think it was you, Mr. Gutierrez, who pointed out that having a solid directive lifted that burden off of the rest of the family, and was a good, you know, reason for people to get this done in their own lives, so they're not causing that stress among their loved ones. But, I think, Dr. Cooney, Ms. Weichert, you were talking a little bit more about actually trying to provide support for the family in getting through this, and that that, in turn, provided benefit back into the care process. Would you want to address that a little? Again, put it in terms of best practices. If you were going to design a program that had best practices, what would be the best practice for attending to the family of the person in the state of advanced illness? Dr. Cooney. As you pointed out, Senator, just as a patient's death doesn't happen in isolation, it affects the family that lives on. A significant illness doesn't happen in isolation. It affects everyone who is around them. And yet, our healthcare payment system is very patient focused. The hospice Medicare benefit, you know, is directed at the patient and family. I do a lot of work with physician billing, and you don't get paid for talking to the family. It's not considered an important part of your job. I think that's a huge mistake, because when we don't coordinate care for people in their individual context, we lose the opportunity to really deliver the best care to the patient, because their family is really part of that illness unit. Senator Whitehouse. Mr. Gutierrez. And then Ms. Weichert. Mr. Gutierrez. Senator, the one intervention that is most appropriate dealing with the complexity of the medical information is the role of nurse navigation, having an individual who basically acts as a concierge to all the options, both on the moral, ethical, and scientific side. We, unfortunately, cannot wait for, nor can the system afford for the right piece of legislation to come out. So, systems need to adopt, you know, the following three criteria that we're holding ourselves to. All patients and families, upon knowledge of a serious illness, must be made aware of the opportunity to have a palliative conversation. That's number one. Number two, the professionals, all the professionals who are in contact with the patient during that serious illness, in their competency requirements, in their job descriptions, will have the competency to participate in an intervention and understand their role. And third, that we need to find a way, irrespective of the payer's responsibilities, within our ministry, to provide an infrastructure that supports it on a consistent basis. So, you know, the nurse navigator from our perspective is probably valued the most, because during that 15- or 20-minute physician interaction, or that ICU interaction, or that emergency room interaction, patients need more. And our investment in those individuals is something that is slowly evolving throughout all of our ministries. Senator Whitehouse. And the nurse navigator has responsibility for addressing not only the concerns of the patient, but also addressing the questions of the family. Mr. Gutierrez. Absolutely. Usually, we're looking at individuals that are masters prepared. Whether they be oncology nurse navigators, or pediatric nurse navigators, usually having one assigned to a particular clinical service line is one that could be of a great assistance and guidance. Senator Whitehouse. And Ms. Weichert. Ms. Weichert. Well, I totally agree with my colleague here. But, I would also say that when someone is given a serious diagnosis, someone that you love is given a serious diagnosis, most of us today run to the internet, and we look to see what is out there. And quite honestly, it's very confusing. We also, the first place we go is, they're going to die, and what are we going to do, and how am I going to take care of them. It is the gift that we give one another when we are able to take care of somebody we love, and it's a gift that they give to us, but generally, we don't know how to do that, and we haven't been trained in that, and we don't know what to expect. And so, having those conversations very early on, having that opportunity for a palliative consult at the very beginning of a serious diagnosis, I think is critical to moving this issue forward in our country. Senator Whitehouse. Well, thank you. It's been a wonderful experience to share this panel with all of you. Your own experiences, as well as your dedication in this area, and your knowledge, has been immensely helpful. And I think that we're at a relatively primitive level, despite the fact that we're a very sophisticated society, in terms of how we deal with people with events, illnesses, how we support them and their families through the events they'll miss, and how we face and manage the process of death, when it comes. And I think you've all been very helpful in helping this Senator and the others who were here make a record that we'll inform our decisions as we go forward, to try to provide more support to you and your excellent organizations, who are doing this out in the real world and with real patients. So, I thank you very much for the time and trouble you took to come here and for the experience and wisdom that you shared. The record of these proceedings stays open for ordinarily a week, if anybody wishes to add any additional materials. And subject to that, the hearing is adjourned. [Whereupon, at 3:25 p.m., the hearing was adjourned.] APPENDIX [GRAPHIC] [TIFF OMITTED] 75911.001 [GRAPHIC] [TIFF OMITTED] 75911.002 [GRAPHIC] [TIFF OMITTED] 75911.003 [GRAPHIC] [TIFF OMITTED] 75911.004 [GRAPHIC] [TIFF OMITTED] 75911.005 [GRAPHIC] [TIFF OMITTED] 75911.006 [GRAPHIC] [TIFF OMITTED] 75911.007 [GRAPHIC] [TIFF OMITTED] 75911.008 [GRAPHIC] [TIFF OMITTED] 75911.009 [GRAPHIC] [TIFF OMITTED] 75911.010 [GRAPHIC] [TIFF OMITTED] 75911.011 [GRAPHIC] [TIFF OMITTED] 75911.012 [GRAPHIC] [TIFF OMITTED] 75911.013 [GRAPHIC] [TIFF OMITTED] 75911.014 [GRAPHIC] [TIFF OMITTED] 75911.015 [GRAPHIC] [TIFF OMITTED] 75911.016 [GRAPHIC] [TIFF OMITTED] 75911.017 [GRAPHIC] [TIFF OMITTED] 75911.018 [GRAPHIC] [TIFF OMITTED] 75911.019 [GRAPHIC] [TIFF OMITTED] 75911.020 [GRAPHIC] [TIFF OMITTED] 75911.021 [GRAPHIC] [TIFF OMITTED] 75911.022 [GRAPHIC] [TIFF OMITTED] 75911.023 [GRAPHIC] [TIFF OMITTED] 75911.024 [GRAPHIC] [TIFF OMITTED] 75911.025 [GRAPHIC] [TIFF OMITTED] 75911.026 [GRAPHIC] [TIFF OMITTED] 75911.027 [GRAPHIC] [TIFF OMITTED] 75911.028 [GRAPHIC] [TIFF OMITTED] 75911.029 [GRAPHIC] [TIFF OMITTED] 75911.030 [GRAPHIC] [TIFF OMITTED] 75911.031 [GRAPHIC] [TIFF OMITTED] 75911.032 [GRAPHIC] [TIFF OMITTED] 75911.033 [GRAPHIC] [TIFF OMITTED] 75911.034 [GRAPHIC] [TIFF OMITTED] 75911.035 [GRAPHIC] [TIFF OMITTED] 75911.036 [GRAPHIC] [TIFF OMITTED] 75911.037 [GRAPHIC] [TIFF OMITTED] 75911.038 [GRAPHIC] [TIFF OMITTED] 75911.039 [GRAPHIC] [TIFF OMITTED] 75911.040 [GRAPHIC] [TIFF OMITTED] 75911.041 [GRAPHIC] [TIFF OMITTED] 75911.042 [GRAPHIC] [TIFF OMITTED] 75911.043 [GRAPHIC] [TIFF OMITTED] 75911.044 [GRAPHIC] [TIFF OMITTED] 75911.045 [GRAPHIC] [TIFF OMITTED] 75911.046 [GRAPHIC] [TIFF OMITTED] 75911.047 [GRAPHIC] [TIFF OMITTED] 75911.048 [GRAPHIC] [TIFF OMITTED] 75911.049 [GRAPHIC] [TIFF OMITTED] 75911.050 [GRAPHIC] [TIFF OMITTED] 75911.051 [GRAPHIC] [TIFF OMITTED] 75911.052