November 2002 A Vision for Better Care at the End of Life Death and dying are not easy to deal with. Perhaps you or someone you love is facing an illness that cannot be cured. Few of us are really ready for the hard choices that may have to be made at the end of life. It can be hard for everyone involved—the dying person, their family and loved ones, and health care providers, too. But there is a way to ease pain and make life better for people who are dying and for their loved ones. It is called palliative care. Palliative care means taking care of the whole person—body, mind, spirit—heart and soul. It looks at dying as something natural and personal. The goal of palliative care is that you have the best quality of life you can have during this time. Some health care providers—doctors, nurses, social workers, pharmacists, clergy and others—have learned how to give this special kind of care. But all health care providers should know how to give good palliative care or to help you find someone who can. FIVE PRINCIPLES OF PALLIATIVE CARE The following Five Principles of Palliative Care describe what care can and should be like for everyone facing the end of life. Some of these ideas may seem simple or just common sense. But all together they give a new and more complete way to look at end-of-life care. 1. Palliative care respects the goals, likes and choices of the dying person. It . . . • Respects your needs and wants as well as those of your family and other loved ones. • Finds out from you who you want to help plan and give you care. • Helps you understand your illness and what you can expect in the future. • Helps you figure out what is important. • Tries to meet your likes and dislikes: where you get health care, where you want to live and the kinds of services you want. • Helps you work together with your health care provider and health plan to solve problems. 2. Palliative care looks after the medical, emotional, social and spiritual needs of the dying person. It . . . • Knows that dying is an important time for you and your family. • Offers ways for you to be comfortable and ease pain and other physical discomfort. • Helps you and your family make needed changes if the illness gets worse. • Makes sure you are not alone. • Understands there may be difficulties, fears and painful feelings. • Gives you the chance to say and do what matters most to you. • Helps you look back on your life and make peace, even giving you a chance to grow. 3. Palliative care supports the needs of the family members. It . . . • Understands that families and loved ones need help, too. • Offers support services to family caregivers, such as time off for rest, and advice and support by telephone. • Knows that caregiving may put some family members at risk of getting sick themselves. It plans for their special needs. • Finds ways for family members to cope with the costs of caregiving, like loss of income, and other expenses. • Helps family and loved ones as they grieve. continued on inside back cover November 2002 © 2002 by Last Acts®, a national coalition to improve care and caring near the end of life. As this is the first comprehensive report ever published on the conditions of dying in America today, Last Acts encourages everyone interested to reproduce and distribute this material as widely as possible. It is also available for downloading from the Last Acts’ Web site at www.lastacts.org. (iii) ACKNOWLEDGMENTS The development of this Last Acts report was an inspiring group project. Many people contributed to this effort, which we hope will spark public discussion about the state of dying in America today. From the first brainstorming session held by the Last Acts Committee Conveners to the report’s publication, drafts found their way into over 40 pairs of capable hands. We are grateful to all of the conveners and other experts who guided us so carefully. Special thanks to Jim Towey for “birthing” the idea that led to the report and his initial stew- ardship of this project. In designing specific measures, we particularly benefited from the expertise of Ira Byock, M.D., Stephen Connor, Ph.D., Elliott S. Fisher, M.D., David Joranson, M.S.S.W., Diane Meier, M.D., Christina Puchalski, M.D., Charles Sabatino, J.D., Joan Teno, M.D., and John Wennberg, M.D. Carolen Collins and the Midwest Bioethics Center were instrumental in de- veloping our “Momentum for Change” section. Peg Metzger developed and wrote the Action Guide which serves as a companion piece to this report. The “Islands of Hope” features describe some of the past winners of the Ameri- can Hospital Association’s Circle of Life Award, www.hospitalconnect.com/aha/ awards-events/circle_of_life/index.html. Many thanks also to Jean and Dick Atcheson and Margaret Trejo, our editorial and design experts, who brought an extraordinary amount of energy, creativity and dedication to this process. As always, the Last Acts team members provided helpful suggestions and quick “turn around” when needed—especially Mollie Katz, Karen Long, Jane Koppelman, and our program officer at The Robert Wood Johnson Foundation, Vicki Weisfeld. Sheila Gaskins’ unflappable good cheer helped us through many a draft. And, last but not least, there would be no report without the tireless and continuous efforts of Tricia Nitsche, our Last Acts Research Associate. How we die says a lot about our society. We hope this report fuels a much larger discussion of why and how America must grapple with improving the care of people nearing the end of their lives. Karen Orloff Kaplan Judith R. Peres Director Deputy Director Last Acts Last Acts (v) CONTENTS Introduction 1 Sparking a Public Discussion 3 How Last Acts Prepared This Report 5 State Report Card Measures 7 1 State Advance Directive Policies 9 Do state policies support good advance care planning? 9 How we rated state advance directive policies 10 MAP Quality of state advance directive laws, 2002 11 CASE STUDY Planning for care makes the end of life easier 12 2 Location of Death 13 What proportion of the state’s deaths occur at home? 13 How we rated the states regarding proportion of at-home deaths 13 MAP Deaths at home, 1997 14 CASE STUDY A family-centered death at home 15 3 Hospice Use 16 Is hospice care widely used in the state? 16 How we rated the use of hospice care 17 MAP People over 65 who used hospice in the last year of life, 2000 18 MAP Median number of days in hospice, 2001 19 CASE STUDY Hospice care allows comfort and closure 20 4 Hospital End-of-Life Care Services 21 Do hospitals in the state offer pain and palliative care services? 21 How we rated the availability of end-of-life care services in hospitals 22 MAP Hospitals reporting pain management programs, 2000 23 MAP Hospitals reporting hospice programs, 2000 24 MAP Hospitals reporting palliative care programs, 2000 25 CASE STUDY An integrated hospital-based palliative care program 26 (vi) 5 Care in ICUs at the End of Life 27 How many elderly people spend a week or more in intensive care units during the last six months of life, meaning that they may have received overaggressive care? 27 How we rated each state’s proportion of ICU deaths 28 MAP People over 65 with 7 or more ICU days during the last 6 months of life, 2000 29 CASE STUDY A difficult death in intensive care 30 6 Pain Among Nursing Home Residents 31 How well do the state’s nursing homes manage their residents’ pain? 31 How we rated each state on how well its nursing homes manage patients’ pain 31 MAP Nursing home residents in persistent pain, 1999 32 CASE STUDY Unnoticed pain, unnecessary suffering 33 7 State Pain Policies 34 Do state policies encourage good pain control? 34 How we rated state pain policies 35 MAP Strength of state pain policies, 2001 36 CASE STUDY Undertreatment of pain sparks legislative change 37 8 Palliative Care-Certified Physicians and Nurses 38 Does the state have enough physicians and nurses who are trained and certified in palliative care? 38 How we rated the supply of palliative care-certified physicians and nurses 40 MAP Percentage of general primary care and primary care subspecialty physicians who are certified in palliative medicine, 2000 41 MAP Percentage of full-time-equivalent nurses (estimated) who are certified in palliative care, 2000 42 CASE STUDY Doctors fear end-of-life decisions, too 43 Recommendations for Action 45 Actions for Public Policymakers 48 Actions for Health Care Leaders 49 Actions for Everyone 50 (vii) Momentum for Change 51 Statewide End-of-Life Care Initiatives 55 Appendix 67 Methodology 69 1 State Advance Directive Policies 70 CHART Quality of state advance directive laws, 2002 70 2 Location of Death 72 CHART Deaths at home, in a hospital, and in a nursing home, by state, 1997 72 3 Hospice Use 74 CHART People over 65 who used hospice in the last year of life, by state, 2000 74 CHART Median number of days in hospice, by state, 2001 75 4 Hospital End-of-Life Care Services 76 CHART Hospitals reporting pain management programs, hospice programs, and palliative care programs, by state, 2000 76 5 Care in ICUs at the End of Life 78 CHART People over 65 with 7 or more ICU days during the last 6 months of life, by state, 2000 78 6 Pain Among Nursing Home Residents 79 CHART Nursing home residents in persistent pain, by state, 1999 79 7 State Pain Policies 80 CHART Strength of state pain policies, 2001 80 8 Palliative Care-Certified Physicians and Nurses 82 CHART Percentage of general primary care and primary care subspecialty physicians who are certified in palliative medicine, 2000 82 CHART Percentage of full-time-equivalent nurses (estimated) who are certified in palliative care, 2000 84 Conveners, Last Acts Committees 86 Other Advisers 87 Endnotes 89 D Introduction uring the past century, we in the United States have seen significant changes in the way we experience illness and death. A hundred years ago, people usually died from an injury or sudden illness. Farm work, factory work—even childbirth—were risky. Today, with medical and other advances, people live longer and can expect to live several years with an illness that may eventually kill them. Ultimately, many will reach a point where medical tech- nology may be able to keep them alive but can neither restore their health nor even improve their condition. In truth, more treatment may be merely pro- longing dying. At that point, patients and families face difficult choices about the kind of care they want. While opinion polls reveal that most Americans would prefer to die at home, free from pain and with their loved ones, the reality is vastly different. Americans often die alone in hospitals or nursing homes, in pain and attached to life support machines they may not want. And this happens despite modern medicine’s ability to ease most pain, the existence of good models of delivering supportive care, and the increasing availability of excellent end-of-life care through hospice and palliative care programs. All these services, however, are underused—in large part because in our death-denying culture, many Americans don’t want to discuss death and dying, or because many Americans don’t know about these options for good end-of-life care and thus don’t ask for them. The last decade saw an evolution in the way Americans think about death and dying. The debate over physician-assisted suicide, coupled with pioneer- ing studies about patterns of end-of-life care, launched a national dialogue about how we die. In November 1995, the Journal of the American Medical Association published initial results from SUPPORT (Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments), the largest, (2) most widely publicized research project examining end-of-life care in the United States to date.1 SUPPORT documented what the public had suspected: Dying in America was unnecessarily painful and isolating, physicians did not understand patients’ wishes, and it was costly. In 1997, an Institute of Medicine report, Approaching Death in America: Improving Care at the End of Life, under- scored that “people have come to both fear a technologically over-treated and protracted death and dread the prospect of abandonment and untreated physical and emotional stress.”2 On the heels of SUPPORT, The Robert Wood Johnson Foundation launched Last Acts, a multiyear, multimillion-dollar national campaign to promote improvements in care and caring near the end of life. Since 1996, Last Acts has been communicating with policymakers, groups representing health care pro- fessionals, and consumer organizations about the need to make sure that se- riously ill and dying patients receive the best care possible and have the fullest possible understanding of the kinds of care available. The need for serious efforts to figure out how best to care for dying people and their loved ones is becoming more urgent every day. A large aging population, increases in the incidence of chronic disease, and the reduced availability of paid and unpaid caregivers, among other factors, must soon focus more at- tention on ways to improve the care we offer individuals nearing the end of their lives. Experts—and the public—generally agree that the best end-of-life care treats the whole person—body, mind and spirit. This is called palliative care. Palliative care works aggressively to relieve pain and other physical symp- toms; it also offers emotional and spiritual support to the patient and family, while respecting their culture and traditions. Care for people near the end of life is largely financed and delivered through Medicare and Medicaid—programs that were not designed to provide comprehensive palliative care. Palliative care is often contrasted with curative care, but the lines between cure and the relief of suffering are blurry. In fact, palliative care may be needed for many years after diagnosis of a serious illness and not just near the end of life. Palliative care can complement other therapies and can be delivered in many settings—hospitals, nursing homes, other long-term-care facilities and hospices. Although palliative care has broad applications, this report focuses on palliative care near the end of life. FAST FACT Approximately 2.5 million people die each year—55,000 of them are children and 80 percent of them are Medicare beneficiaries. (3) In 1997, Last Acts published its Precepts of Palliative Care, which describe for health professionals five areas that are key to delivering high-quality end-of-life care.3 Briefly stated, these core areas are: ■ Respecting patient goals, preferences and choices. ■ Providing comprehensive caring. ■ Utilizing the strengths of interdisciplinary resources. ■ Acknowledging and addressing caregiver concerns. ■ Building systems and mechanisms of support. A Vision for Better Care at the End of Life, a version of the Precepts for the public, appears as the endpapers of this report. SPARKING A PUBLIC DISCUSSION In this report, Last Acts rates each of the 50 states and the District of Colum- bia on eight criteria as a basis for assessing the state of end-of-life care in this country. Despite many recent improvements in end-of-life care and greater public awareness about it, this report shows that Americans at best have no better than a fair chance of finding good care for their loved ones or for them- selves when facing a life-threatening illness. In most states, too few patients are accessing hospice and palliative care services, there are too few professionals trained in pain management and palliative care, and there are too many patients dying in hospitals and nursing homes—in pain—rather than at home with their families. Our ratings suggest a statistical portrait of access to some facets of good end-of- life care—they are far from a perfect measuring tool. For several important aspects of end-of-life care—such as whether emotional or spiritual needs are addressed or awareness of the dif- ferences in the kind of care desired by people from dif- ferent cultural backgrounds—state-by-state data simply do not exist. (Some notes on the importance of spirituality and cultural issues in health outcomes and health care decision-making are presented on pages 4 and 5.) All the data need some ex- planation about their strengths and weaknesses and what they are really telling us. We hope that this report will stimulate efforts to improve the availability and quality of the data needed to understand end-of-life care in this country, but meanwhile we hope to spark a public discussion that cannot wait until more refined data are developed. (4) In a country where so much research is conducted it is remarkable that this should be the first attempt to offer a comprehensive report on a situation that ought to interest every single American. Its importance is as obvious as its urgency. Our elderly population is increasing, and as our family members and friends grow ill and die, the experience becomes vivid to every one of us. What do we know about death in this country? What are our expectations for our own care at the end of our lives? Or would we rather not think about it? Last Acts offers this report to help every interested American start to under- stand how disturbing the current situation is and, at the same time, what the elements of good end-of-life care are. It is a reminder that thinking ahead about the kind of care we want for ourselves and our families, and where we might turn to find it, is critical in averting crises when an incurable illness strikes. Thinking ahead is essential in making the end of life as peaceful as possible. SPIRITUALITY Over time Western medicine has separated physical care from patients’ spiritual needs. Increasingly, however, there is recognition of the importance of spirituality in the care of dying people.4,5 Numerous studies have been done that support the important role spirituality plays in patient care.6,7 When medicine confronts life-limiting illness, in particular, and when cure becomes less likely, it is of paramount importance to help patients cope with their suffering and eventual dying. As people near death they often wrestle with questions such as “Why me?” or “What will happen to me?” or “What has my life meant?” These are inherently issues of the spirit, not only of biology or chemistry. Physicians and other health care providers increasingly recognize that good care of dying people is as much or more about these questions as it is about the relief of pain and other symptoms. Spirituality is an expression of how people relate to a larger whole—something greater than themselves—and how they find meaning in the midst of their suffering. A person’s purpose and meaning in life can be expressed in different ways—through specific religious traditions, a deep regard for nature, connections to family, nature, art and music, or in some other way that is uniquely personal.8,9,10,11 Many hospitals recognize the role of spiritual caring in their provisions for chaplains and religious services and the inclusion of chaplains or other religious advisers on hospital palliative care teams.12 Hospice has long rec- ognized the critical importance of involving pastoral pro- fessionals on interdisciplinary teams and always makes this service part of the total package of care available to all patients and their families. Increasingly, medical schools are realizing that ad- dressing spirituality can be an important and useful part of patient care and doctors’ own well-being. More than 70 medical schools now include some teaching about spiri- tuality and medicine.13 While some doctors may hesitate to tread on spiritual ground, it seems that Americans their doctors to ask them about spiritual concerns. In 1996, reported that 63 percent of people surveyed believe it is good for doctors to talk to patients about spiritual beliefs.14 The American College of Physicians has convened two consensus conferences, which concluded Key Issues MORE INFO See “Spirituality and End-of- Life Care” in Innovations in End-of-Life Care, 1(6), Nov.–Dec., 1999, and “Palliative Care in African American Communities” in Innovations in End-of-Life Care, 3(5), Sept.–Oct., 2001, at www2.edc.org/lastacts/ USA Today want (5) that physicians are obligated to address the spiritual and existential suffering of their patients.15,16 A spiritual as- sessment tool was developed that many medical schools and hospitals are now using routinely.17 In another recent survey, 45 percent of respondents indicated that spiritual or religious beliefs would influence their treatment decisions if they were seriously ill.18 A 1997 Gallup survey, which addressed needs people would have at the end of life, showed that the top concern of the American public was having their spiritual needs ad- dressed.19 In fact, seriously ill patients and bereaved family members have rated attention to spirituality among their most important concerns at the end of life.20,21 DIVERSITY People from different backgrounds have different beliefs about and approaches to almost any important issue. The challenges and dilemmas that surround serious illness and death are no exception. Increasingly, doctors, nurses and counselors are being urged to identify and respect the unique needs, wishes and views about end-of-life issues of dying patients and their families. In recent years, the diversity of our population’s pref- erences with respect to end-of-life care has received some long-overdue attention. Results of one study of Caucasian, African, Korean and Mexican Americans suggest that eth- nicity is strongly related to attitudes toward and personal wishes for the use of life support.22 Another study found that African Americans are consistently more likely than whites to prefer aggressive treatment during the terminal phase of an illness. African Americans are one-third as likely as Caucasians to have living wills and one-fifth as likely to have Do Not Resuscitate (DNR) orders. Hispanics are about one-third as likely as Caucasians to have DNR orders and are equally likely to have living wills.23 Even though certain beliefs and practices may be more common in particular ethnic or cultural groups, we cannot presuppose another individual’s beliefs, desires or motives based on superficial knowledge or stereotype. The Diversity Committee has published a , which is ac- companied by several case studies that depict the kinds of issues that arise when patients from various backgrounds deal with end-of-life decisions.24 HOW LAST ACTS PREPARED THIS REPORT In May 2001, Last Acts brought together a group of national experts in palliative care, spirituality, pain management and the U.S. health care system. (Please see page 86 for a complete listing of the conveners’ names and affiliations.) They were there to produce something that did not exist—a way to describe the status of end-of-life care in every state. Much discussion of possible means of measuring the state of care eventually focused on eight important questions: 1 Do state policies support good advance care planning? 2 What proportion of the state’s deaths occur at home? 3 Is hospice care widely used in the state? 4 Do hospitals in the state offer pain and palliative care services? 5 How many elderly people spend a week or more in intensive care units during the last six months of life, meaning that they may have received over- aggressive care? Key Issues Last Acts Statement on Diversity and End-of-Life Care (6) 6 How well do the state’s nursing homes manage their residents’ pain? 7 Do state policies encourage good pain control? 8 Does the state have enough physicians and nurses who are trained and cer- tified in palliative care? The answers to these questions can be found in the State Report Card Measures—the heart of this report. We describe each measure in turn, say why it is important and how it was developed and show a map indicating state per- formance—A, B, C, D or E. (A much more detailed description of the data behind each measure, by state, is in the Appendix.) With each measure, we include a brief case study illustrating how this measure affects real people, in real situations, every day. We follow this section with a set of Recommendations for Action. Although the State Report Card Measures are discouraging and show tremendous shortfalls in care, there is good news, too. In a later section of this report, titled Momentum for Change, we describe how state coalitions composed of diverse professional and consumer groups have recognized the serious problems with care of the dying in their states and are working actively to try to fix them. Already some of their efforts have resulted in substantial progress, described on pages 53–66. And, recently, Last Acts established a new project, called Rallying Points, to help some 350 local coalitions work to improve end-of-life care at the community level. Details about where these coalitions are located and what they are doing can be found on the project’s Web site, www.rallyingpoints.org. State Report Card Measures See the Appendix, pages 67–85, for the actual data, charted by state, on which these measures are based. (9) State Advance Directive Policies 1 Do state policies support good advance care planning? People use advance care planning documents (living wills and medical powers of attorney) in an attempt to determine the type of care they want if they cannot speak for themselves. These documents explain the extent to which people want life-sustaining medical treatments, and appoint someone to make those decisions for them if they cannot. Experts and consumers alike believe that honoring a terminally ill patient’s treatment preferences is a critical element of high-quality end-of-life care.25 Although advance directive policies are determined primarily at the state level, in 1991, Congress enacted the Patient Self-Determination Act (PSDA). This act requires that all health care facilities receiving Medicare or Medicaid re- imbursements must inform patients of their right to make choices about the treatment they receive and to prepare advance directives. As an additional guide to patients’ treatment wishes, most health care facilities, including nursing homes and rehabilitation centers, are required to have a Do Not Resuscitate (DNR) order policy in place if they wish to be accredited by the Joint Commission on Accreditation of Healthcare Organizations (JCAHO). There are also some people living at home for whom resuscitation is not ap- propriate or is unwanted. In order to protect them from resuscitation efforts (which are mandatory if emergency personnel are called), many states have authorized “non-hospital” (or out-of-hospital) DNR orders. These are orders signed by a physician that can be presented to emergency medical personnel, which allow them not to begin resuscitation. Currently 44 states and the District of Columbia have authorized the use of non-hospital DNR orders. Despite the PSDA’s requirement that health care providers tell patients about advance directives, surprisingly few Americans actually complete these doc- uments. A study published in 2002 estimated the overall prevalence of advance directives to be 15 to 20 percent in the general population.27 Rates of com- pletion are also low in the populations that most need them. A 2002 study of nursing home residents found that only 20 percent of them had living wills, and 48 percent had DNR orders.28 ? Advance Directive is a general term used to describe two types of documents—living wills and medical powers of attorney. Living wills (sometimes called medical directives) are written instructions for care in the event that a person is not able to make medical decisions for him- or herself. Currently, 47 states and the District of Columbia have laws authorizing living wills. Massachusetts, Michigan and New York do not.26 (10) State Advance Directive Policies 1 How we rated state advance directive policies For this report, we looked at the extent to which five aspects of state policies conform to key elements of the Uniform Health Care Decisions Act,29 plus one aspect reflecting the existence of state DNR order policy. Except where indicated, the sources of these data are the legislative tracking charts pro- duced by the American Bar Association’s Commission on Law and Aging.30 Ac- cording to the Uniform Act, states should: ■ Recommend a single, comprehensive advance directive, which reduces con- fusion (1 point). ■ Avoid mandatory forms or language for medical powers of attorney or combined living wills/medical powers of attorney, giving residents the freedom to express their wishes in their own way (1 point). ■ Give precedence to the agent’s authority or most recent directive over the living will, recognizing that an agent has the advantage of being able to weigh all the facts and medical opinions in light of the patient’s wishes at the time a decision needs to be made (1⁄2 point).31 ■ Authorize default surrogates (typically next of kin) to make health care decisions, including decisions about life support if the patient has not named someone (1 point). ■ Include “close friend” in the list of permissible default surrogates, recog- nizing that “family” in today’s world often extends beyond the nuclear family (1⁄2 point). ■ Have a statewide (non-hospital) DNR order protocol for Emergency Medical Service personnel, to ensure that the wishes of terminally ill patients in the community can be followed by EMS personnel (1 point).32 This report placed states into five groups according to their overall score, which could range from 0.0 to 5.0. States receiving an A scored 4.5 to 5.0 overall, those receiving a B scored 3.5 to 4.0, and so on. Fairview Health Services • Minneapolis, Minnesota Fairview Health Services includes seven hospitals, three physician networks, 75 clinics, three nursing homes, and 14 senior residences. All patients are asked upon admission who should make decisions for them if they become incapacitated. At one of Fairview’s rural sites, advance directives and care plans are reviewed whenever patients have a history and physical exam. Patients keep the original form, as they go from setting to setting, and a copy goes into each chart. ✔ IS L A N D O F H O P E A medical power of attorney (sometimes called a health care power of attorney) is a document that appoints a particular person (health care proxy or health care agent) to make health care decisions for a patient who is unable to do so for him- or herself (not just during a terminal illness). All 50 states and the District of Columbia have laws recognizing health care powers of attorney. Currently 28 states and the District of Columbia specify the types of decisions that health care proxies can make. e ic l er f Quality of state advance directive laws, 2002 Range 0.5 – 5.0 4.5–5.0 3.5–4.0 2.5–3.0 1.5–2.0 0.5–1.0 A B C D E (11) State Advance Directive Policies 1 Source: American Bar Association, Commission on Law and Aging. State Health Decisions Legislative Update, 2002, www.abanet.org; Sabatino, CP. “The Legal and Functional Status of the Medical Proxy: Suggestions for Statutory Reform.” Journal of Law, Medicine & Ethics, 27: 552–68, 1999; Sabatino, CP, “Survey of State EMS-DNR Laws and Protocols.” Journal of Law, Medicine & Ethics, 27: 297–315, 1999. Delaware Florida Hawaii Maine Maryland Michigan New Mexico A Alabama Arizona Colorado Connecticut Georgia Illinois Massachusetts Minnesota Mississippi New York Oregon Virginia West Virginia B Alaska Kansas Pennsylvania Vermont EArkansas California District of Columbia Idaho Iowa Kentucky Louisiana Missouri Montana New Jersey North Dakota Rhode Island South Dakota Texas Utah Washington Wyoming C Indiana Nebraska New Hampshire North Carolina Ohio Oklahoma Nevada South Carolina Tennessee Wisconsin D State Advance Directive Policies 1 In 1998, when Margaret Lazarz was 80, she sat down with trusted rel- atives to orchestrate a critical stage in her life—her final medical care. With two cardiac surgeries and a pacemaker behind her, and congestive heart failure a near certainty, she knew that a time would come, not far in the future, when she would need her loved ones to act on her behalf. She created a power of attorney for health care, designating her sister-in-law, Rosella Lazarz, and her niece, Janet Aide, as her representatives in making decisions. If her breathing and heart stopped, she did not want doctors to attempt cardiopulmonary resuscitation (CPR) unless she had a good chance of survival. Her wishes were put down in writing. Some time later, Margaret was taken to the hospital because her poorly functioning heart allowed her lungs to fill with fluid and she was unable to breathe. There she was asked whether she wanted to be resuscitated if her symptoms advanced further. Margaret’s personal doctor was met with a list of questions from the family representatives: How bad was her heart? What could she expect for the future? If her breathing stopped, would CPR be suc- cessful? Would her treatment be top quality if she did not choose CPR? Could a plan be made to ensure she was comfortable, no matter what happened? Gently, the doctor explained to Margaret that CPR would not help extend her life with any quality, if it worked at all. She then agreed to let her written directive stand. In just a few weeks, her breathing and heart began to fail again. Hospice helped make her more comfortable, and she died the fol- lowing day. Her advance directive, well understood by her family, had been respected. “It was a big relief to have a plan,” said Rosella Lazarz, who is confident that she abided by her sister-in-law’s last wishes. Adapted from Partnership for Caring C A S E S T U D Y P l a n n i n g f o r c a r e m a k e s t h e e n d o f l i f e e a s i e r (12) (13) Location of Death 2 What proportion of the state’s deaths occur at home? About 50 percent of Americans 65 and older die in hospitals, often after stays in intensive care units, visits to multiple physicians in the months before death, and expensive life-prolonging treatments. Another 20 to 25 percent die in nursing homes, and this proportion is growing. Only 24.9 percent of Americans die at home, although more than 70 percent say that is their wish.33 Certainly, not all people with life-threatening illnesses can die at home. Sometimes a hospital or nursing home is the most appro- priate place for people whose conditions require advanced medical technology or when home care is difficult or not desired. Still, most patients who die in hospitals and nursing homes would not require institutional care if support were available for them at home.34 That, coupled with the large proportion of people who want to die at home, suggests that the 24.9 percent rate of home deaths easily could be higher. Where people die—and what kind of end-of-life care they receive—may be less a reflection of their wishes and more influenced by local doctors’ practice habits, the availability of hospice services and the proportion of open hospital beds in the community.35 People use hospice services earlier in their course of illness if they live in areas that have more hospital beds, more hospice services and more general practitioners.36 They are less likely to die in hospitals if they live in areas where nursing homes and hospices are more available. Patients’ preferences often are not the deciding factor in where they die.37 How we rated the states regarding proportion of at-home deaths We gave states one of five grades, with the top grade reserved for states where more than 60 percent of deaths occurred at home, a level below the ex- pressed desire of more than 70 percent of Americans. No state receives an A on the map on page 14. ? ✔ Deaths at home, 1997 Range 14.7% – 35.8% Mean 24.9% > 60% 45 < 60% 30 < 45% 15 < 30% 0 < 15% A B C D E (14) Location of Death 2 Source: Brown University Center for Gerontology and Health Care Research, www.chcr.brown.edu/dying/forresearcherssod.htm. —A —B District of Columbia EAlaska Idaho New Mexico Nevada Oregon Utah Washington C Alabama Arizona Arkansas California Colorado Connecticut Delaware Florida Georgia Hawaii Illinois Indiana Iowa Kansas Kentucky Louisiana D Maine Maryland Massachusetts Michigan Minnesota Mississippi Missouri Montana Nebraska New Hampshire New Jersey New York North Carolina North Dakota Ohio Oklahoma Pennsylvania Rhode Island South Carolina South Dakota Tennessee Texas Vermont Virginia West Virginia Wisconsin Wyoming (15) Location of Death 2 For 11 years, Ruth Wolf waged a fierce battle against cancer. At the age of 58, she had gone through chemotherapy, attended cancer support groups, researched new cancer treatments, challenged her oncologist’s decisions, and endured both a double mastectomy and a bone marrow transplant. When the cancer spread to her brain, she decided it was time to die. Ruth wanted to exert as much control over the course of her death as she had over her disease, and dying at home was paramount to that wish. With the help of hospice, her two extremely supportive daughters and her husband, she was able to do just that. Ruth had her hospital bed and oxygen tank placed in her living room, so that her many friends would feel more com- fortable visiting than if she were in her bedroom. “She wasn’t hiding,” recalled her daughter, Dagny. A multitude of friends came through—friends from childhood, from her college days, and from her cancer support group. “They had time to talk with her,” Dagny said. “In fact, people would come and camp out in our house.” For the two months before her death, the house was con- stantly filled with the sounds of laughter, talking and ringing phones, just as Ruth had wanted. “Mom had collected dozens of scarves to cover her head while she was in chemotherapy,” Dagny said. “She had us drape the scarves over the fur- niture, and asked each visitor to take a scarf to have something to remember her by. When they chose a scarf, she told a story that went along with how she had bought that particular one. It’s tragic that she died so young, but if we could all die like she did, we’d be fortunate. I take great pride in the fact that we helped her have the death that she wanted, and that she was able to do it at home.” Adapted from an interview with Ruth Wolf’s daughter, Dagny C A S E S T U D Y A f a m i l y - c e n t e r e d d e a t h a t h o m e (16) Hospice Use 3 Is hospice care widely used in the state? Hospice is a philosophy of care that considers the dying patient and family as one unit and focuses on relieving symptoms (palliation) rather than at- tempting to cure underlying disease. This kind of palliative care can be provided wherever the patient calls home—a private residence, a nursing home, assisted living or a hospice facility. The care is multifaceted, attending not only to physical symptoms, but also to psychological, emotional and spiritual needs. Support for family members continues after the patient’s death—one-year bereavement services are a standard hospice benefit. Over the years, Americans have increasingly turned to hospice. Enrollment has risen from about 1,000 per year in 1975, when hospice care was intro- duced in the United States, to 700,000 in 2000.38 This increase in enrollment was made possible in large part by congressional approval of hospice care as a separate Medicare benefit in 1982. Since Medicare covers almost every American 65 and older, and since 75 percent of Americans who die are in that age group, hospice then became a covered benefit for the vast majority of dying Americans. To qualify, a patient must have a life expectancy of six months or less and must forgo curative treatments. Medicaid also pays for care near the end of life, largely through funding of long-term-care services for low- income people. Medicaid’s role in paying for hospice is small and follows Medicare’s rules. Many end-of-life care experts, as well as patients and families, consider hospice to be the “gold standard” in end-of-life care—in terms of both quality and cost- effectiveness.39 Most people equate end-of-life palliative care with hospice care, but it can also be effectively delivered in hospitals, nursing homes and other long-term-care facilities. Family members consistently report the quality of hospice care to be excellent.40 Compared to traditional care for the terminally ill, hospice care and the use of advance directives such as living wills and medical powers of attorney could save up to 10 percent of the cost of care in a ? Hospice of the Florida Suncoast • Largo, Florida This award-winning organization provides high-quality end-of-life care for 4,700 people each year, and in its Pinellas County region it is “the place to go” for support when death touches life. HFSC reaches out to many segments of the community—police officers, em- ployers and doctors’ office staff, as well as families—with bereavement counseling services. “They helped me get myself together and prepare for the future,” said one widow whom HFSC aided. IS L A N D O F H O P E (17) Hospice Use 3 patient’s last year of life, 10 to 17 percent in the last six months, and 25 to 40 percent in the final month.41 Traditional end-of-life care seriously affects family income and savings.42 Experts agree that patients need to be enrolled in hospice for at least 60 days to maximize its benefits, in terms of pain and symptom management and psychological and spiritual support.43 Unfortunately, the average length of stay in hospice has dropped over the years, from 70 days in 1983 to 36 days more recently. In 1998, 28 percent of hospice patients were enrolled for one week or less before dying.44 How we rated the use of hospice care This report measures hospice use in two separate ways: How many state res- idents who die receive hospice care, and for how long? For each, we placed each state into one of five groups, A through E. For the percentage of residents who obtain hospice care, states receiving an A would be those where more than 50 percent of people over 65 used hospice in their last year of life. For the length of hospice care, states in the A group would have median patient stays of at least the recommended 60 days. The remaining four grades were set at equal intervals. Data for the hospice care measure are from 2000; data for length of stay are from 2001. Note that no state gets an A, and only one achieves a B. ✔ People over 65 who used hospice in the last year of life, 2000 Range 4.9 – 42.0% Mean 21.5% > 50% 37.5 < 50% 25 < 37.5% 12.5 < 25% 0 < 12.5% A B C D E (18) Hospice Use 3 Source: Special analysis by the research team for the Dartmouth Atlas of Health Care, Web site www.dartmouthatlas.org. —A ArizonaB Alaska Maine EColorado Florida Illinois Michigan Nevada New Mexico Ohio Oklahoma Oregon Texas C Alabama Arkansas California Connecticut Delaware District of Columbia Georgia Hawaii Idaho Indiana Iowa Kansas Kentucky Louisiana Maryland Massachusetts Minnesota Mississippi Missouri Montana Nebraska New Hampshire New Jersey New York North Carolina North Dakota Pennsylvania Rhode Island South Carolina South Dakota Tennessee Utah Vermont Virginia Washington D West Virginia Wisconsin Wyoming Median number of days in hospice, 2001 Range 13.7 – 42.9 days Mean 25.3 days > 60 days 45 < 60 days 30 < 45 days 0 < 15 daysA B C E (19) Hospice Use 3 15 < 30 daysD Source: National Hospice and Palliative Care Organization. —A —B Rhode Island EAlabama Louisiana Mississippi New Mexico North Carolina South Carolina C Arizona Arkansas California Colorado Connecticut Florida Georgia Hawaii Idaho Illinois Indiana Iowa Kansas Kentucky Maine Maryland Massachusetts Michigan Minnesota Missouri Montana Nebraska New Hampshire New Jersey New York North Dakota Ohio Oklahoma Oregon Pennsylvania South Dakota Tennessee Texas Utah Vermont Virginia D Washington West Virginia Wisconsin Wyoming Data not available Alaska Delaware District of Columbia Nevada (20) Hospice Use 3 A round of chemotherapy had produced less than promising results for Tom Bradshaw, 61. Doctors said that his esophageal cancer had grown, and new cancers had appeared in his liver and stomach. Tom decided that he did not want to spend his final days in a losing battle with a rapidly advancing and very painful disease. He preferred to be as comfortable as possible and at home. Tom and his wife, Mimi, contacted a local Miami hospice organization that helped them set up the range of services Tom would need through what turned out to be his final two months of his life. The hospice assigned a nurse and a physician to Tom’s case. Then hospice staff trained Mimi, their friends and family, in administering Tom’s pain medications and using tiny ice chips to help him cope with an extremely dry throat and mouth. The hospice nurse also taught Mimi how to tell when Tom’s pain was increasing, so that he could be given a higher dosage of morphine to bring him comfort. In addition, Tom received visits from a family psychologist to discuss death, and how to make peace with his son, with whom he had a strained re- lationship. In his last meeting with the psychologist, Tom said, “I don’t want to die, but it seems to be my time. It’ll be okay.” When the hospice nurse estimated that Tom would probably die in about two days, she told Mimi to alert family and friends who lived at a distance, so that they would have time to visit with him and say goodbye. In those two days, Tom was surrounded by a round-the-clock vigil of those who loved him. Later, many said they felt good about the way Tom died. They were grateful for the opportunity to be part of a courageous, peaceful and graceful death in the comfort and familiar surroundings of Tom’s home. A social worker from the hospice kept in touch with Mimi for a year after Tom’s death, helping her to cope with her feelings of loss. Adapted from an interview with Tom Bradshaw’s son, Keenan C A S E S T U D Y H o s p i c e c a r e a l l o w s c o m f o r t a n d c l o s u r e (21) Hospital End-of-Life Care Services 4 Do hospitals in the state offer pain and palliative care services? Although the proportion of deaths occurring in hospitals is declining in America, about half of all deaths still take place there. All hospitals should offer critically ill and dying patients the palliative care services they need. A self-reported survey conducted by the American Hospital Association (AHA) in 2000 found that only 42 percent of U.S. hospitals reported offering a formal pain management program, and 23 percent and 14 percent offered formal hospice or palliative care programs, respectively. These services are defined by the AHA as follows: a) Pain Management: A formal program that educates staff about how to manage chronic and acute pain based on accepted academic guidelines. b) Hospice: A program providing palliative care and supportive services that address the emotional, social, financial and legal needs of terminally ill pa- tients and their families. This care can be provided in the hospital or at home under the auspices of the hospital. c) Palliative Care Program: A program providing specialized medical care, drugs or therapies to manage acute or chronic pain and/or control other symptoms. The program, run by specially trained physicians and other cli- nicians, also provides services such as counseling about advance directives, spiritual care and social services to seriously ill patients and their families. While the number of organized palliative care programs in hospitals is increasing, they are not yet the norm and do not easily fit into the coverage and payment policies of Medicare and other insurers. Funding for these programs often depends on cobbling together resources from different departments and funding streams, including short-term grants. Their continuation is jeopardized whenever any of these resources disappear. ? (22) Hospital End-of-Life Care Services 4 How we rated the availability of end-of-life care services in hospitals As with any self-reported survey, the data depend on the accuracy of reporting by many individuals. While such a method is less reliable than a special study, the AHA has conducted this survey for many years, and it is a reasonably trust- worthy snapshot of the nation’s approximately 6,000 hospitals. Each service was considered separately. States were placed into one of five equally distributed groups, with the better states having the most hospitals that offer formal end-of-life care services. No state would earn an A in any of the three services. ✔ Beth Israel Medical Center • Manhattan “We create a system around the patient,” says Russell K. Portenoy, M.D., describing the com- prehensive services of Beth Israel’s Department of Pain Management and Palliative Care. It offers patients and families—early in the trajectory of a serious illness—a broad range of services, including intensive pain and symptom management, but also inpatient consultations, case management and community-based services. This successful program is becoming in- tegral to patient care, teaching and research programs throughout the institution. IS L A N D O F H O P E (23) Hospital End-of-Life Care Services 4 Hospitals reporting pain management programs, 2000 Range 4.9 – 72.7% Mean 42.3% 80 < 100% 60 < 80% 40 < 60% 0 < 20% A B C E 20 < 40% D Source: Hospital Statistics. American Hospital Association, 2000 data. —A Connecticut Delaware District of Columbia New Hampshire New Jersey New York B Mississippi Nevada Wyoming EAlabama Arizona California Colorado Florida Georgia Hawaii Illinois Indiana Maine Maryland Massachusetts Michigan Missouri North Carolina Ohio Oregon C Alaska Arkansas Idaho Iowa Kansas Kentucky Louisiana Minnesota Montana Nebraska New Mexico North Dakota Oklahoma South Dakota Tennessee Texas West Virginia Pennsylvania Rhode Island South Carolina Utah Vermont Virginia Washington Wisconsin D (24) Hospital End-of-Life Care Services 4 Hospitals reporting hospice programs, 2000 Range 5.0 – 57.5% Mean 23.5% 80 < 100% 60 < 80% 40 < 60% 0 < 20% A B C E 20 < 40% D Source: Hospital Statistics. American Hospital Association, 2000 data. —A —B Alabama Alaska Delaware District of Columbia Florida Georgia Hawaii Kansas Kentucky Louisiana Maine Maryland Mississippi Nevada New Mexico New York Oklahoma Rhode Island South Carolina Texas Utah West Virginia Wisconsin EConnecticut Iowa Wyoming C Arizona Arkansas California Colorado Idaho Illinois Indiana Massachusetts Michigan Minnesota Missouri Montana Nebraska New Hampshire D New Jersey North Carolina North Dakota Ohio Oregon Pennsylvania South Dakota Tennessee Vermont Virginia Washington (25) Hospital End-of-Life Care Services 4 Hospitals reporting palliative care programs, 2000 Range 0 – 54.5% Mean 13.8% 80 < 100% 60 < 80% 40 < 60% 0 < 20% — A A —B Alabama Alaska Arizona Arkansas California Colorado Delaware Florida Georgia Hawaii Idaho Illinois Iowa Kansas Kentucky Louisiana Maine Minnesota Mississippi Missouri Montana Nebraska Nevada New Mexico North Carolina North Dakota Oklahoma Oregon EDistrict of Columbia Vermont C Connecticut Indiana Maryland Massachusetts Michigan New Hampshire New Jersey New York Ohio Pennsylvania D B C E 20 < 40% D Source: Hospital Statistics. American Hospital Association, 2000 data. Rhode Island South Carolina South Dakota Tennessee Texas Utah Virginia Washington West Virginia Wisconsin Wyoming (26) Hospital End-of-Life Care Services 4 One of the nation’s premier hospital-based palliative care programs functions at Mount Sinai Hospital in New York City’s Lilian and Benjamin Hertzberg Palliative Care Institute. A consultation team (a nurse, 10 attending physicians, some rotating fellows and a few residents in training) advises hospital physicians who care for seriously ill patients on topics such as pain and symptom management, when to use comfort care and how to talk about treatment options with patients and family members. The program also includes a four-bed inpatient unit for patients with dif- ficult emotional and physical symptoms and for those who need help ad- justing to and planning a course of care for their terminal illness. The unit is staffed by nurses, social workers, interns and residents, and works closely with the consultation team. A home care program staffed by Mount Sinai's Certified Home Health Agency and Mount Sinai’s “Visiting Doctors” program cares for seriously ill patients who are able to return home. Finally, a palliative care program trains new physicians, using bedside teaching, clinical rotations and lectures. Mount Sinai requires that all oncology and geriatrics fellows complete a one- month clinical palliative care rotation. According to program director Diane Meier, M.D., an increasing number of hospital physicians are using the consultation team, and they are seeking the team’s advice earlier in a patient’s care. About half of the patients for whom the team consults are able to leave the hospital to go home, usually with hospice care, or to a nursing home. In hospitals without these palliative care services, such sick patients would probably die in the hospital. Adapted from the Mount Sinai School of Medicine Web site, www.mssm.edu/geriatrics/ hertzberg.shtml C A S E S T U D Y A n i n t e g r a t e d h o s p i t a l - b a s e d p a l l i a t i v e c a r e p r o g r a m (27) Care in ICUs at the End of Life 5 How many elderly people spend a week or more in intensive care units during the last six months of life, meaning that they may have received overaggressive care? Hospital intensive care units (ICUs) and critical care units (CCUs) are where patients with acute, life-threatening illnesses or injuries receive specialized around-the-clock medical and nursing care, such as mechanical ventilation and invasive cardiac monitoring. Each year more than 4 million patients are ad- mitted to U.S. intensive care units,45 and about 500,000 of them die there.46 Many Americans fear spending their final days in intensive care “connected to machines.” ICU care is often uncomfortable and unwanted. For example, a recent study of cancer patients being treated in the ICU found that 55 to 75 percent had moderate to severe pain, discomfort, anxiety, sleep disturbance or unsatisfied hunger or thirst.47 Another study of ICU cancer patients established that their treatment choices—as expressed by their advance directives—did not affect whether life-support efforts were begun.48 Data in this report show that the percentage of people who died who spent a week or more in an intensive care unit during the last six months of life ranged from 3.4 percent in Oregon to 17.3 percent in New Jersey. As with many of our measures, substantial variation exists within states. Some communities within the state will be well below the state average, while other communities will be above it. ? MORE INFO Data at the level of specific communities are available from the Dartmouth Atlas of Health Care at www.dartmouthatlas.org (28) Care in ICUs at the End of Life 5 How we rated each state’s proportion of ICU deaths End-of-life care in ICUs and CCUs has only recently gained the attention of re- searchers. New initiatives are focusing attention on the type of care given in the ICU, communication with patients and their families, and the amount of time that terminally ill patients spend in an ICU. As yet, there is no consensus on what percentage of people appropriately spend seven or more days in an ICU in the last six months of life. We therefore rated the states on a “curve” for this measure. The five states with the lowest percentage of decedents who spent a week or more in the ICU in their last six months of life received an A. The ten next lowest were given a B, and so on. ✔ MORE INFO For more information on initiatives promoting palliative care excellence in intensive care, see www. promotingexcellence.org. (29) Care in ICUs at the End of Life 5 People over 65 with 7 or more ICU days during the last 6 months of life, 2000 Range 3.4 – 17.3% Mean 10.1% 0 – 6.0% 6.1 – 7.5% 7.6 – 12.% 12.2 – 13.7% 13.8+% Colorado Hawaii New Hampshire North Dakota Oregon A A Idaho Iowa Maine Massachusetts Minnesota Montana Utah Vermont Washington Wisconsin B Delaware Florida New Jersey South Carolina Tennessee EAlabama Alaska Arizona Arkansas California Connecticut Georgia Kansas Louisiana Mississippi Missouri C District of Columbia Illinois Indiana Kentucky Maryland Michigan North Carolina Texas Virginia West Virginia D B C D E Nebraska New Mexico New York Nevada Ohio Oklahoma Pennsylvania Rhode Island South Dakota Wyoming Source: Special analysis by the research team for the Dartmouth Atlas of Health Care, www.dartmouthatlas.org. (30) Care in ICUs at the End of Life 5 Joann’s mother, Violet, had surgery to remove a second brain tumor, and in the years that followed the procedure she repeatedly told her family that if anything were to happen, she did not want to endure “that sort of thing” again. “She would say, ‘I’m tired. I’ve had enough. If anything else comes up, I don’t want any more,’ “ Joann said. Violet never signed an advance directive, but her family felt that her wishes were clear. Then, quite suddenly, she had a heart attack and was rushed to the hospital. Facing a medical emergency, with no clear instructions on what to do, the doctor put her on life support in the intensive care unit. She remained there, semicomatose, for a week, and then died. Joann said later that there had been no room for intimacy or conversation in the ICU, and physical contact with her mother was all but impossible. During the rare moments when Violet was alert, she was alarmed to find herself in the hospital. “Because of all the tubes and this and that, you felt like you couldn’t physically help,” Joann said, “and it’s hard to stroke someone or be near them. You can’t even imagine saying goodbye because it’s like they are not even there. You’re an observer. It was the equivalent of being at a wake.” If anyone had ever talked with Violet about what she meant by “nothing extraordinary” and “I’ve had enough,” and then had discussed her wishes with the doctor, perhaps he would have known not to intubate her. Had the family known more about the medical system and the options available, and what their mother wanted and didn’t want, perhaps they would have asked that the ventilator be removed so that her dying would not have been pro- longed and so that they could have said goodbye to her in peace. From Virginia Morris, Talking About Death Won’t Kill You (New York: Workman Publishing, 2001). Reprinted with permission. C A S E S T U D Y A d i f f i c u l t d e a t h i n i n t e n s i v e c a r e (31) Pain Among Nursing Home Residents 6 How well do the state’s nursing homes manage their residents’ pain? About 1.6 million Americans live in nursing homes and according to national surveys, if they are in pain, it is not likely to be assessed or adequately treated. These findings are sobering, given that many nursing home residents have chronic conditions, and more than 20 percent of residents die there— a figure projected to double by 2020. Adequate pain management for seriously ill and dying nursing home residents is essential to achieving high- quality end-of-life care in a state.49 According to a comprehensive national study conducted in 1999, nearly one- sixth of nursing home patients are in daily pain, and more than 40 percent of residents who were in pain at their first pain assessment were still in severe pain 60 to 180 days later.50 Another recent study found that many dying nursing home residents who are in daily pain receive either inadequate pain treatment or none at all.51 How we rated each state on how well its nursing homes manage patients’ pain The percentage of patients who are considered to be in persistent pain was cal- culated by finding the percentage of patients in pain, when first asked, who were still in pain when asked again, 60 to 180 days later. States where fewer than 25 percent of nursing home residents have persistent pain would have received an A. (None qualified.) The remaining four groups were placed at 10 percent intervals, with states where rates of persistent pain are more than 55 percent receiving an E. ? ✔ St. Joseph’s Manor • Trumbull, Connecticut In 1997, when St. Joseph’s Manor started an institution-wide effort to improve end-of-life care, staff recognized that “dying is a sacred time, a life event that should be supported in special ways,” says Karin Tomsic, director of pastoral care and mission. An angel placed on a dying resident’s door signals that additional support is needed, that it is time to say goodbye, and that routine events, such as equipment maintenance, should be set aside. IS L A N D O F H O P E (32) Pain Among Nursing Home Residents 6 Nursing home residents in persistent pain, 1999 Range 33.3 – 54.9% Mean 42.2% < 25% 25 < 35% 35 < 45% > 55% — A A HawaiiB IdahoEAlabama Arkansas California Connecticut Delaware District of Columbia Florida Georgia Illinois Indiana Iowa Kentucky Louisiana Maine C Alaska Arizona Colorado Kansas Montana Nevada New Mexico South Dakota Utah West Virginia D B C E 45 < 55% D Maryland Massachusetts Michigan Minnesota Missouri Mississippi Nebraska New Hampshire New Jersey New York North Carolina North Dakota Ohio Oregon Oklahoma Pennsylvania Rhode Island South Carolina Tennessee Texas Vermont Virginia Washington Wisconsin Wyoming Source: Brown University Center for Gerontology and Health Care Research, www.chcr.brown.edu/dying/forreessearcherspsp.html. (33) Pain Among Nursing Home Residents 6 C A S E S T U D Y U n n o t i c e d p a i n , u n n e c e s s a r y s u f f e r i n g One year ago, Robert Wagner, 81, moved to a nursing home after a stroke impaired his speech and paralyzed his right side. Robert found it awkward and embarrassing to communicate. He struggled to complete a sentence and was ashamed to gesture because of his immobilized right arm. He seemed to avoid talking, even when his wife and friends were there. Whenever nurses and physicians asked him how he felt, he routinely an- swered, “Fine.” One day, Robert’s occupational therapist noticed that he was frowning and blinking often. Although he said, as usual, that he was fine, the therapist consulted with a physician who referred him to an ophthalmologist. During the eye exam, the ophthalmologist inadvertently leaned against Robert’s left leg. Robert let out a cry, and tears welled up in his eyes. The ophthalmologist then realized that Robert was in pain. Further testing revealed a cancer in his right femur. Robert’s pain would not have gone unnoticed if the staff in his nursing home had been properly trained to identify pain in their patients—even in those who cannot communicate. Providers qualified to prescribe medications are experienced in selecting the right pain medication at the right dosage, and nursing home staff would have checked Robert’s comfort level frequently, knowing that pain can flare up unpredictably. Adapted from the Partners Against Pain Web site, www.partnersagainstpain.org (34) State Pain Policies 7 Do state policies encourage good pain control? Medical experts agree that at least 90 to 95 percent of all serious pain can be safely and effectively treated, yet at least half of dying patients report being in pain.52 For the patient, unrelieved pain is oftentimes crippling; it triggers a range of problems that include depression, social isolation, disturbed sleep, de- creased mobility, falls, difficulty in thinking clearly, and loss of appetite. Unre- lieved pain is costly to society in both direct and indirect ways, and it can ruin the quality of life of patients and their families.53 Many factors contribute to inadequate pain treatment, but for most of them state-level data do not exist. One factor we are able to assess is state policy relating to pain management. State policy can have an impact on what doctors know about pain management, their ability to prescribe adequate doses of pain medication, and their fears of being sanctioned for overprescribing. All states have laws addressing controlled substances, such as opioids, which are primarily aimed at decreasing the chance that these drugs will be misused. Some of these state policies are useful and effective; some create formidable barriers to good pain management. For example, certain laws would sanction a doctor based on the number of doses in a prescription or the prescription’s du- ration, both of which standards have no clinical basis and do not take into account the very high doses that some patients may need.55 In July 2000, the American Bar Association recognized the numerous legal barriers to good pain management and adopted a resolution urging state, federal and territorial governments to remove legal barriers to high-quality pain and symptom management, and to support the right of all patients to receive effective pain and symptom evaluation, management and ongoing monitoring, as part of basic medical care.56 ? FAST FACT “Opioids” are strong pain medications derived from opium, or synthesized to behave like opium derivatives. Examples of opioids include morphine, codeine, oxycodone, methadone and fentanyl.54 (35) State Pain Policies 7 How we rated state pain policies We assessed pain policies using six criteria and assigned a point value to each: 1 State policy explicitly addresses the needs of terminally ill patients (1 point). 2 The state has a comprehensive pain management policy or has adopted the model pain treatment guidelines issued by the Federation of State Medical Boards (0 = no or none of the guidelines adopted; 1 point = adopted one or two of the guidelines; 2 points = adopted several guidelines; 3 points = adopted most or all). 3 State policy includes provisions that have the potential to impede pre- scribing pain medication, particularly restrictions on medical decision- making that could affect dying patients (–1 to –3 points, with –1 point = only a few negative provisions; –2 points = several; –3 points = significant restrictions). 4 State policy reassures physicians that they can treat pain with opioids without undue regulatory scrutiny (1 point). 5 State policy defines what constitutes good medical practice for pain man- agement (2 points). 6 State policy expresses concern about the undertreatment of pain (1 point). States were given grades, according to their overall score, which ranged from –2 to +9. States in the A group scored +8 to +9 overall, those in the B group scored +6 to +7, and so on. ✔ (36) State Pain Policies 7 Strength of state pain policies, 2001 Range –2 – +9 +8, +9 +6, +7 +3, +4, +5 0, +1, +2 –2, –1 Alabama Florida Kansas Nebraska North Carolina Utah Washington A A Kentucky Maine Maryland Minnesota Missouri Nevada Pennsylvania Rhode Island West Virginia B Alaska Connecticut Delaware Hawaii Idaho Illinois Indiana Louisiana New York Wisconsin EArizona California Colorado Montana New Hampshire New Mexico Oklahoma Oregon South Carolina South Dakota Tennessee Wyoming C Arkansas District of Columbia Georgia Iowa Massachusetts Michigan Mississippi New Jersey North Dakota Ohio Texas Vermont Virginia D B C D E Source: Based on Achieving Balance in Federal & State Pain Policy, dated July 2000, and updated in the Annual Review of State Pain Policies 2000 (published February 2001) and Annual Review of State Pain Policies 2001 (published February 2002) from the Pain and Policy Studies Group of the University of Wisconsin’s Comprehensive Cancer Center, Madison, Wisconsin. More recent information may be available at the group’s Web site: www.medsch.wisc.edu/painpolicy. (37) State Pain Policies 7 At age 85, William Bergman was dying of lung cancer. He was ad- mitted to Eden Medical Center in northern California in February 1998, com- plaining of intolerable pain. During a five-day hospital stay in which he was treated by an internal medicine specialist, nurses charted Mr. Bergman’s pain level at 10—the worst rating on their pain intensity scale. Despite his family’s intention that his pain be addressed, Mr. Bergman’s internist sent him home— still in agony—with inadequate medication. Ultimately, his family contacted another physician who took a more aggressive approach, and Mr. Bergman died at home soon afterward. This case inspired the California legislature to pass Assembly Bill 487, signed into law October 4, 2001. The new law requires that physicians who fail to prescribe, administer or dispense adequate pain medication be charged with unprofessional conduct and be investigated by the California Medical Board’s Division of Licensing. Physicians found guilty of undertreating pain must complete a pain-management education program. Adapted from a story that appeared in Last Acts Quarterly, Summer 2001 C A S E S T U D Y U n d e r t r e a t m e n t o f p a i n s p a r k s l e g i s l a t i v e c h a n g e (38) Palliative Care-Certified Physicians and Nurses 8 Does the state have enough physicians and nurses who are trained and certified in palliative care? Appropriate care for dying people requires a team of health professionals trained in end-of-life care. While certification in palliative care is now available for physicians and nurses, few who offer this care have specialty training. For both physicians and nurses, certification programs in palliative care help to set standards of quality care and provide clinicians who can serve as change agents and leaders in the field of end-of-life care and within their institutions. Since 1996, the American Board of Hospice and Palliative Medicine (ABHPM) has offered physicians certification in palliative care. As of March 2002, 917 U.S. doctors had passed the board’s examination. Certifi- cation is an acknowledgment of a physician’s knowledge, at- titudes and skills as they apply to good palliative care. Ac- cording to a recent study, certified physicians are more likely than their noncertified peers to believe themselves ade- quately prepared to provide palliative care (70 percent versus 38 percent); however, only 39 percent of physicians providing palliative care are certified.57 As of January 2002, 7,623 U.S. nurses were certified in hospice and palliative care as CHPN (“Certified Hospice and Palliative Nurse”). The Hospice and Pal- liative Nurses Association (HPNA) has provided this certification since 1994. To be certified, CHPNs must demonstrate both knowledge and competency in hospice and palliative nursing. Large hospice programs are beginning to ac- knowledge the benefits of having certified nurses on their staffs. Several programs and state hospice organizations sponsor review courses and provide financial assistance to nurses interested in certification; others offer certified nurses higher salaries.58 While accreditation standards for medical schools now include the mandate to cover end-of-life care, the requirement contains no clear standards for that in- struction.59 As the Accreditation Council for Graduate Medical Education does not yet accredit palliative medicine residencies or fellowships, a limited number of these programs currently exist. ? (39) Palliative Care-Certified Physicians and Nurses 8 Several excellent programs do exist for practicing health care professionals. One of these is the Education for Physicians on End-of-Life Care (EPEC) project, which trains physicians both to provide such care and to train others to do so. EPEC is designed to educate physicians about the essential clinical compe- tencies required to provide quality end-of-life care. As of February 2002, the EPEC project had trained 863 physicians and other health care professionals.60 A study of physicians and hospitals providing palliative care found that the EPEC program “plays a key role in educating physicians on palliative care.”61 ELNEC (End-of-Life Nursing Education Consortium) is a program to train a core of expert nurse-educators and to coordinate national nursing efforts in end-of-life care. ELNEC began in February 2000 and will continue for three and a half years. The program involves three-day courses for baccalaureate and associate-degree faculty, who then can facilitate the integration of end- of-life nursing care into basic nursing curricula. The eighth course, scheduled for January 2003, is for state board of nursing representatives to strengthen their commitment to encouraging end-of-life care education and practice initiatives.62 As of April 2002, there were 937 ELNEC trainers in the United States. Other efforts are under way to incorporate palliative care and end-of-life care into the medical school curriculum. Studies demonstrating a lack of end-of-life material in medical textbooks have sparked a response by publishers.63 In addition, educators and students are establishing new end-of-life curricula in medical education.64,65 FAST FACT Nearly 40 million Americans will be 65 or older by 2010. The baby boomers—those born between 1946 and 1964—will start turning 65 in 2011. Their numbers will drive an elder boom.66 By 2030, one-fifth of the U.S. population, more than 70 million people, will be over the age of 65.67 (40) Palliative Care-Certified Physicians and Nurses 8 How we rated the supply of palliative care-certified physicians and nurses This report compares states on the percentage of physicians or nurses who are certified in palliative care. Our measure considers data for physicians and nurses separately, in part to emphasize the need for progress in both fields. In practice, however, palliative care should be a collaborative effort, involving a team of practitioners rather than a doctor or nurse working alone. Nurses spend more time with dying patients and families than do any other health care pro- fessionals and are intimately involved in all aspects of end-of-life care.68 Since an “ideal” percentage of certified palliative care health care practitioners has not been established, we rated states on a “curve” for this measure. The five states with the highest percentage of palliative care certified physicians or nurses are in the A group. The B group contains the 10 states with the next highest percentages, and so on. ✔ (41) Palliative Care-Certified Physicians and Nurses 8 Percentage of general primary care and primary care subspecialty physicians who are certified in palliative medicine, 2000 Range 0.00 – 0.97% Mean 0.33% 0.50 – 0.97% 0.37 – 0.49% 0.22 – 0.36% 0.18 – 0.21% 0.00 – 0.17% Maine Montana New Hampshire New Mexico Vermont A A Arizona Florida Iowa Kansas Michigan Ohio Oklahoma Utah Wyoming B Alaska Georgia Idaho Nebraska North Dakota South Carolina Virginia ECalifornia Colorado Connecticut Delaware District of Columbia Hawaii Illinois Kentucky Louisiana Maryland Minnesota Mississippi Missouri New York Oregon C Alabama Arkansas Indiana Massachusetts Nevada New Jersey North Carolina Pennsylvania D B C D E Rhode Island South Dakota Tennessee Texas Washington West Virginia Wisconsin Source: American Board of Hospice and Palliative Medicine; www.abhpm.org. American Medical Association. Physician Characteristics and Distribution in the US, 2002–2003 Edition (Chicago: American Medical Association Press, 2002). (42) Palliative Care-Certified Physicians and Nurses 8 Percentage of full-time-equivalent nurses (estimated) who are certified in palliative care, 2000 Range 0.09 – 1.13% Mean 0.41% 0.66 – 1.13% 0.50 – 0.65% 0.30 – 0.49% 0.18 – 0.29% 0.00 – 0.17% Delaware Kentucky Montana New Hampshire Vermont A A Arizona Florida Maine Maryland New Mexico Ohio Oklahoma Oregon West Virginia Wisconsin B Alaska District of Columbia Missouri Rhode Island South Dakota ECalifornia Colorado Connecticut Georgia Hawaii Illinois Indiana Iowa Kansas Massachusetts Michigan Minnesota Nebraska New Jersey North Carolina Pennsylvania C Alabama Arkansas Idaho Louisiana Mississippi Nevada New York North Dakota South Carolina Tennessee Utah D B C D E Texas Virginia Washington Wyoming Source: Hospice and Palliative Nursing Association; www.hpna.org/. HRSA, Division of Nursing. The National Survey of Registered Nurses, March 2000: Preliminary Findings February 2001. (43) Palliative Care-Certified Physicians and Nurses 8 A doctor was treating a patient whose cancer had spread to 11 dif- ferent areas of the brain. Chemotherapy and radiation no longer held any promise; it was time to focus on comfort. And yet, according to one col- league, the doctor kept softening anything he said with words like “yet” or “at this time.” So the family kept asking, “Is it time for more chemo yet?” The doctor admitted privately that he was hoping the patient would decide against further chemotherapy, which would end the discussion and put the weight of the decision on the patient’s shoulders, rather than on his or the family’s. This scenario could have been avoided had the doctor been properly trained in end-of-life care. He could have been more direct and honest in telling the patient and family that more treatment would be senseless. He could have discussed care options (including hospice) to ensure that the patient’s remaining days would be spent as comfortably as possible. At the very least, he could have informed the patient and family that death was approaching, allowing time for everybody to say goodbye. From Virginia Morris, Talking About Death Won’t Kill You (New York: Workman Publishing, 2001). Reprinted with permission. C A S E S T U D Y D o c t o r s f e a r e n d - o f - l i f e d e c i s i o n s , t o o Recommendations for Action A Recommendations for Action s the data in this report indicate, Americans’ likelihood of receiv- ing good end-of-life care varies widely, depending on where they live, what they know about quality end-of-life care services and the type of care they choose. Even though some aspects of care may be better in some states than in others, in general, care for dying Americans is no better than mediocre. This is true despite years of research, im- proved professional education and training, the ex- cellent record of hospice, innovation among hos- pitals and some nursing homes, grassroots advocacy and millions of dollars of private philanthropy—all directed at advancing the understanding and availability of good palliative care near the end of life. Last Acts believes that the United States is at a crossroads. The state-by-state data we have gathered and analyzed here depict a nation that is coping poorly with critically ill and dying people right now. As we noted, there were no available data on spiritual and cultural issues at the end of life that could be tracked by state; however, there is no reason to believe that these matters are being well addressed nationwide. Meanwhile, demographers forecast a con- stantly growing number of elderly people and ever higher burdens of chronic illnesses. Much more must be done to make dying a more compassionate and caring experience, both for the patient and for the family, in America. Last Acts recommends the essential steps that follow. (48) Actions for Public Policymakers General 1. Make quality end-of-life care a priority for national health policy. 2. Make end-of-life care a special priority in aging policy. 3. Support public/private initiatives to meet the needs of family caregivers. 4. Encourage policies to enhance consumers’ knowledge of the options for quality care near the end of life. Decision-Making 5. Promulgate policies that encourage advance care planning and out-of- hospital Do Not Resuscitate programs. 6. Ensure that in the absence of advance directives, family surrogacy is rec- ognized and used in the best interests of dying people. Professional Capacity 7. Set state targets for the numbers of doctors and nurses with palliative care training needed to care for the state’s critically ill and dying patients, and work with state-funded educational institutions to achieve them. 8. Encourage requirements for continuing medical and nursing education about end-of-life care. Service Delivery 9. Establish good pain management policies that tackle the problem of under- treatment of pain. 10. Encourage coordination of health services programs used by dying people of all ages, to promote continuity of care. 11. Require that hospitals and nursing homes establish palliative care services—using appropriately trained multidisciplinary teams, meeting quality standards and encouraging contracting with hospice—as a con- dition of their participation in Medicare and Medicaid. 12. Reassess the rules and regulations that apply to nursing homes (where re- habilitation is the mission) and allow greater flexibility in caring for dying residents. 13. Support the provision of hospice services in government-run institutions— prisons, jails, mental hospitals, and so on. 14. Change the Medicare hospice eligibility criteria to allow Medicare benefi- ciaries to qualify for the Hospice benefit by diagnosis rather than an es- timate of a six-month prognosis of terminal illness. ✔ (49) Research and Financing 15. Support large-scale demonstrations of promising models of coordinated end-of-life care that are likely to show both better quality of life for patients and families, and cost savings. 16. If these demonstrations warrant, revise Medicare and Medicaid benefits to cover the clinical, counseling and support services essential to high-quality end-of-life care. 17. Collect data to assess quality, cost and access to end-of-life care in a variety of settings. 18. Develop evidence-based palliative care clinical protocols. Actions for Health Care Leaders 1. Work to establish multidisciplinary palliative care services in hospitals— particularly in intensive care units—and nursing homes for seriously ill patients who have symptoms that are difficult to handle or painful treatments, or who are likely to die. 2. Include hospice or palliative care service rotations in physician, nurse, social work and pharmacy training. 3. Encourage the capacity of end-of-life teams to be culturally competent. 4. Expand the relevant training and role of social workers—particularly about advance care planning, recognizing cultural issues and the need for family support. 5. Convey the expectation of good pain and symptom management to clinical staff in hospitals, nursing homes and other settings. 6. Work with clinicians on key communications skills: breaking bad news and setting realistic treatment goals. Currently, few know how to do this well. 7. Support practicing physicians who seek training in palliative care. 8. Engage in ongoing clinical and process improvement efforts. 9. Advocate tirelessly for the comfort and support of dying patients and their families. ✔ (50) Actions for Everyone 1. Learn what constitutes good end-of-life care. 2. Don’t be afraid to insist that your loved one, friend or neighbor receive it. 3. Join others in your state or community who are trying to make positive changes. 4. Ask your employer to have policies in place to help seriously ill employees, those caring for a seriously ill family member, and those who are bereaved. 5. Complete your own advance directive and discuss it with your family, health care proxy and physician. Update it every five years or when your health changes. 6. Encourage your spiritual leader to help your congregation explore the spiritual aspects of illness and death, and organize to help seriously ill members and their families. 7. Learn practical ways to help friends and family who are grieving. Americans have successfully avoided the unpleasant topic of death and dying for two or three generations. But now, as we begin to experience a rapid in- crease in the number of elderly citizens, our denial comes at a price we cannot afford—the risk of leaving more and more Americans without good, sup- portive, affordable care as their lives come to a close. The data brought together in this report represent the best statistics currently available regarding end-of-life care in America. We ardently wish that they will inspire better, more thorough and complete documentation of progress at the national, state and local levels. The many people who aided Last Acts in com- piling this report share the hope that it will raise public awareness, spur both the expectation and demand for good end-of-life care, and help everyone who cares about our future to make a clear and factual case for reform. ✔ Momentum for Change S Momentum for Change tatewide coalitions and partnerships in 30 states are working to build a diverse constituency for improving the quality of end-of-life care. Through them, significant numbers of community, professional and policy stakeholders are able to identify common obstacles, create comprehensive strategies, and carry out mutually agreed-on policy and educational initiatives. There are four main goals for their activities: ■ To improve advance care planning. ■ To improve pain management. ■ To improve the quality of care and care coordination. ■ To increase both the demand for and access to high- quality end-of-life care. The groups vary considerably in terms of management structure, type of lead organization and mechanisms for carrying out initiatives. A handful grew out of state end-of-life commissions that gathered data and set reform agendas. Others were formed from well- established hospice, bioethics, health care decision-making or pain policy or- ganizations. A few have been in existence for more than a decade; others have formed since 1998, or even more recently. Many of the coalitions began by gathering information about serious barriers to good end-of-life care, which they have used to inform their respective statewide plans of action. Typically, the groups: ■ Create consumer education tools that empower patients to plan and ad- vocate for themselves and their loved ones at the end of life. ■ Help public agencies, associations of faith leaders, state nursing groups and others identify end-of-life care as a critical agenda item. ■ Launch coordinated community outreach efforts around programs such as Bill Moyers’ four-part PBS series, On Our Own Terms. (54) ■ Obtain media coverage that raises the public’s expectation of excellent care. ■ Spotlight cultural, ethnic, social and economic diversity issues to ensure that excellent end-of-life care is available to underserved and vulnerable people as well as those who can afford it. ■ Organize training sessions for practicing physicians, nurses, pastoral care professionals and other members of palliative care teams using tested edu- cational programs such as the Education for Physicians on End-of-Life Care (EPEC) curriculum. ■ Conduct model quality improvement projects focused on advance care planning and pain management in nursing homes and other care settings. ■ Organize state licensing boards to adopt joint pain policy standards or issue interpretations of laws and regulations. ■ Educate policy leaders on how to revise existing state policies and create new policies related to end-of-life care. Overall, the statewide end-of-life care initiatives have proved their ability to overcome the competition and dissension that sometimes keep natural allies from collaborating and promoting the common good. They help states create a whole that is greater than the sum of its parts. • • • The map opposite shows the 30 existing statewide coalitions and partner- ships and is followed by brief descriptions of each one with complete contact information. FAST FACT Largely through the work of statewide coalitions, 160 separate legislative acts were passed in 23 states between 1999 and 2001. (55) Statewide End-of-Life Care Initiatives ■ Alabamians for Better Care at Life’s End ■ California Coalition for Compassionate Care ■ Connecticut Coalition to Improve End-of-Care—Better Endings ■ District of Columbia Partnership to Improve End-of-Life Care ■ The Florida Partnership for End-of-Life Care ■ Georgia Collaborative to Improve End-of-Life Care ■ Hawaii Kokua Mau ■ Illinois Coalition for Improving End-of-Life Care ■ Indiana Hospice & Palliative Care Organization ■ Iowa Partnership for Quality Care in Dying with Dignity ■ Kansas LIFE Project—Living Initiatives for End-of-Life Care ■ Journey’s End—A Kentucky Partnership for Quality End-of-Life Care ■ Maine Center for End-of-Life Care ■ Massachusetts Compassionate Care Coalition ■ Michigan Partnership for the Advancement of End-of-Life Care ■ Minnesota Partnership to Improve End-of-Life Care ■ Missouri End-of-Life Care ■ Nebraska Coalition for Compassionate Care ■ Nevada Center for Ethics and Health Policy ■ New Hampshire Partnership for End-of-Life Care ■ New Jersey Comfort Care Coalition ■ North Carolina: The Carolinas Center for Hospice and End-of-Life Care ■ North Dakota Matters of Life & Death Project ■ Oklahoma Alliance for Better Care of the Dying ■ Rhode Island: Improving Quality of Care for Our Most Vulnerable Population ■ Tennesseans End-of-Life Partners ■ Texas Partnership for End-of-Life Care ■ Utah Partnership to Improve End-of-Life Care ■ Washington State End-of-Life Consensus Coalition ■ West Virginia Initiative to Improve End-of-Life Care ■ Community–State Partnerships to Improve End-of-Life Care Source: National Conference of State Legislatures; Community-State Partnerships; Rallying Points. ■ Community-State Partnerships to Improve End-of-Life Care ■ Statewide Initiatives: Rallying Points Alabamians for Better Care at Life’s End Formed in 1999, the partnership is focused on improving access to end-of- life care for the most disadvantaged Alabamians. The partnership is working to build professional and lay education opportunities through nursing cur- riculum reform and a palliative care rural scholars program. It is also work- ing to implement pain as a fifth vital sign at the University of Alabama at Birmingham Hospital and eventually at other institutions; to create a clergy education program; and to liberalize Medicaid regulations. The group re- cently co-sponsored an interdisciplinary one-day Intensive Palliative Care Introduction/Review Course. Contact: Kay Johnson, R.N., M.P.H., University of Alabama at Birmingham Palliative Medicine Program, 1801 Building, 1530 Third Avenue South, Birmingham, AL 35294-0023. Phone: (205) 975-9815. E-mail: kayjohns@uab.edu.Web: www.abcle.org. California Coalition for Compassionate Care The California program is carried out by a 35-member partnership formed in 1998. The coalition has three major initiatives: (1) end-of-life care guidelines for skilled nursing facilities; (2) advance care planning tools in English and Spanish; and (3) professional education efforts that include EPEC training for practicing physicians. The group is highly regarded as an educational resource on end-of-life issues by California policymakers. A recent initiative is the establishment of several Latino advisory committees that are working to- gether to guide community outreach efforts directed at Spanish-speaking Californians. Contact: Marge Ginsburg, Executive Director, Sacramento Health Care Decisions, 10540 White Rock Road, Suite 135, Rancho Cordova, CA 95670. Phone: (916) 851-2828. E-mail: marge.shd@quiknet.com. Web: www.finalchoices.calhealth.org. Connecticut Coalition to Improve End-of-Life Care— Better Endings The Connecticut coalition is a statewide not-for-profit organization that ad- dresses a comprehensive array of end-of-life care issues. Its six task forces are: Public Education, Professional Education, Law and Ethics, Services and the Continuum, Research, and Arts and Humanities. Focused on public, profes- sional and policymaker education, the task forces engage in projects related to community outreach and focus group research, advance care planning, best practices in end-of-life care, professional education for medical students, de- velopment of consumer education materials and caregiver support. Contact: Karen Weingrod, Director, Connecticut Coalition, 300 Research Parkway, Meriden, CT 06450. Phone (203) 237-4556. E-mail: kweingrod@canpfa.org. Web: www.canpfa.org/endoflife/index.htm. (56) (57) District of Columbia Partnership to Improve End-of-Life Care This District-wide program is guided by a community advisory board whose members represent many cultures and ethnic groups within the city. Initiatives have four focus areas: Professional Education, Public Education, Public Policy, and Research. All areas utilize the combined expertise of a broad array of professionals, health care organizations, professional schools and community organizations to effect systematic, sustained reform of care for residents of the D.C. metropolitan area who are facing life-limiting illnesses. Contact: Joan Panke, M.A., A.P.R.N., Executive Director, D.C. Partnership, c/o District of Columbia Housing Authority, 1250 Eye Street, N.W., Suite 700, Washington, DC 20005. Phone: (202) 289-6231. E-mail: jpanke@dcha.org. Web: www.dcha.org/EOL/eol.htm. The Florida Partnership for End-of-Life Care Based on the recommendations of a state end-of-life work group, state part- nership initiatives have included a statewide network of community-based coalitions, the State’s first-ever pain management training program for phar- macists, a DNR order demonstration project, an end-of-life care education program for EMS providers, public education campaigns involving the statewide aging network, ethics educational materials for diverse populations, and professional end-of-life care educational programs with special sessions for attorneys and clergy. Contact: Robyn Chase, Coordinator, Florida Partnership, 1616 Metropolitan Circle, Suite D, Tallahassee, FL 32308. Phone: (850) 878- 2632. E-mail: flpartners@nettally.com. Web: www.floridapartnership.org. Georgia Collaborative to Improve End-of-Life Care The focus of the Georgia collaborative is educating nurses, physicians and health facility surveyors. The partnership works collaboratively to present ELNEC training for nurses and social workers in the state. Contact: Glenn Landers, Georgia Collaborative, c/o Georgia Health Policy Center, One Park Place South, Atlanta, GA 30303. Phone: (404) 463-9562. E-mail: mail@ gaeolcare.org. Hawaii Kokua Mau Kokua Mau, which means continuous care, builds on four key recommen- dations that emerged from a statewide planning process conducted by Governor Ben Cayetano’s Blue Ribbon Panel on Living and Dying with Dignity. Hawaii’s multicultural, multiracial citizens face a unique and complex challenge in finding quality end-of-life care in the setting of their choice. Therefore, the Kokua Mau project focuses on providing culturally appropriate practical re- sources to the clergy; running a speaker’s bureau and conducting a statewide public awareness campaign; piloting a pain as a fifth vital sign demonstra- tion project; and providing updated information to policymakers and health care regulatory boards. Contact: Joanna Crocker, Ph.D., Project Coordina- tor, Executive Office on Aging, No. 1 Capitol District, 250 South Hotel Street, Suite 406, Honolulu, HI 96813-2831. Phone: (808) 586-7285. E-mail: jcrocke@mail.health.state.hi.us. Web: www.kokuamau.org. Illinois Coalition for Improving End-of-Life Care The Illinois coalition has several priority activities that include providing edu- cation on end-of-life issues such as pain management and use of advance di- rectives to both professional and community groups. Contact: Mickey Stanley, Executive Director, Illinois Coalition for Improving End-of-Life Care, 200 West Third Street, Suite 704, Alton, IL 62002. Phone: (618) 275-4336. E-mail: Stanley@shawneelink.com. Indiana Hospice & Palliative Care Organization The organization (IHPCO) provides a statewide consumer helpline on family caregiving, manned by a social worker. The organization recently developed a public education campaign, “Say You Care: Start the Conversation,” which features conversation starters, a workbook for families, a family caregiving information sheet, a video and a public service announcement featuring basketball star Larry Bird. The group also serves as a clearinghouse for profes- sionals on end-of-life issues and advocates on behalf of the terminally ill and their loved ones. Contact: Harriet O’Connor, President and CEO, IHPCO, 1720 Market Tower Building, 10 West Market Street, Indianapolis, IN 46104. Phone: (317) 464-5145. E-mail: inhospiceorg@att.net. Iowa Partnership for Quality Care in Dying with Dignity The Iowa partnership has 108 members and more than four dozen community coalitions. Four work groups address specific issues related to enhancing the quality of end-of-life care. These work groups (1) promote Iowans’ end-of-life care awareness and knowledge; (2) distribute the partnership’s Implementing Pain as a Fifth Vital Sign manual throughout Iowa health care institutions; (3) develop guidelines for EMS agency and personnel for out-of-hospital DNR orders and promote related legislation; and (4) increase access to oral health care at the end of life. The partnership also plans to pilot a faith community ini- tiative. Contact: Tanya Uden-Holman, Ph.D., M.A., Assistant Professor (Clinical Track), Institute for Quality Healthcare, University of Iowa, 5229 Westlawn Building South, Iowa City, IA 52242-1100. Phone: (319) 335-8708. E-mail: tanya-uden-holman@uiowa.edu. Web: www.public-health.uiowa.edu/EndOfLife/. (58) (59) Kansas LIFE Project—Living Initiatives for End-of-Life Care The Kansas LIFE Project is a collaborative effort of more than 70 agencies and organizations including governmental agencies, professional associa- tions, licensing boards, academic institutions, medical providers, media, consumer action groups and a Caring Communities program. The shared mission of the LIFE Project Partners is to help Kansans live with dignity, comfort and peace as they near the end of life. The project’s strategic initiatives are focused on impacting three arenas—public policy, professional education and systems change, and public engagement and awareness. Contact: Stacie Ogborn, Project Manager, LIFE Project Foundation, 1901 University, Wichita, KS 67213. Phone: (316) 263-6380. E-mail: stacie@lifeproject.org. Web: www.lifeproject.org. Journey’s End—A Kentucky Partnership for Quality End-of-Life Care The centerpiece of the Kentucky Partnership is establishment of a new Leg- islative Taskforce on End-of-Life Care chaired by State Sen. Julie Denton. The partnership also recently learned that the University of Louisville is supporting its proposal for a new center for research in end-of-life care. The partnership has a number of other initiatives under way. They include: (1) education of prac- ticing professionals using the EPEC curriculum; (2) a toll-free peer resource help line for professionals staffed by five board-certified palliative care physicians and initiated July 2000; (3) development of pain management and advance care planning guidelines to be piloted in five long-term-care facilities; and (4) imple- mentation of a coordinated case management service to support a wide array of interdisciplinary palliative care services for a Medicaid partnership, called Passport. Contact: Jennifer Scharfenberger, Project Coordinator, KHA Center for Nursing and Allied Health Professions, 2501 Nelson Miller Parkway, Louisville, KY 40223. Phone: (502) 426-6220. E-mail: JScharfenberger@kyha.com. Web: www.journeysendky.org. Maine Center for End-of-Life Care The newly created Maine Center for End-of-Life Care builds on the work of the Maine Consortium for Palliative Care & Hospice and the 18-year-old Maine Hospice Council. The partnership has developed a resource directory; a hospice/palliative care rotation for second-year medical students at the Uni- versity of New England; and an interfaith manual on end-of-life care. An im- portant aspect of the project is the involvement of health care insurers and af- filiates and other health care organizations in development of an ideal services package that includes universal access to hospice and end-of-life care. The center currently supports five regional coalitions and is working with the state long-term-care association on standards of best practice and employee re- tention. Contact: Kandyce Powell, R.N., M.S.N., Maine Hospice Council, 16 Winthrop, P.O. Box 2239, Augusta, ME 04338-2239. Phone: (207) 626-0651. E-mail: kpowell@saturn.caps.maine.edu. Web: www.mcpch.org. Massachusetts Compassionate Care Coalition MCCC is a voluntary collaborative of organizations, agencies, institutions and individuals who seek to enhance care for people affected by life-limiting illnesses. The group works closely with the Massachusetts legislature’s Com- mission on End-of-Life Care. MCCC has been engaged in a variety of public outreach projects: promoting community conversations on advance care planning and developing several theater and visual arts projects. The coalition sponsors regular networking breakfasts that bring professionals and consumers together. MCCC co-sponsored a seminar on “Ethics and The Health Professions in End-of-Life Care” with Brandeis University in October 2002. Contact: Carol Wogrin, Executive Director, MCCC, 53 Langley Road, Suite 260, Newton Center, MA 02459. Phone: (617) 964-1196. E-mail: cwogrin@ mountida.edu. Michigan Partnership for the Advancement of End-of-Life Care The Michigan Partnership for the Advancement of End-of-Life Care strives to increase the quality of, accessibility to, and timeliness of referrals to palliative and end-of-life care in Michigan. The partnership has a number of accom- plishments over the past three years. Educators from medicine, nursing, pharmacy, social work and pastoral care developed competencies for end-of-life care and promoted those standards and available resources within their insti- tutions and disciplines. Members of the partnership helped the state’s regu- latory agency develop and adopt statewide pain management and end-of-life in- dicators for use by long-term care facilities and surveyors. Focusing on diverse communities and end-of-life care decision-making, the partnership developed a well-received community education training program and supporting ma- terials. Contact: Bradley McKinney, M.P.H., M.S.W., Project Director, Michigan Partnership, 6015 West St. Joseph Highway, Suite 104, Lansing, MI 48917. Phone: (517) 886-6667. E-mail: bradhospice@aol.com. Minnesota Partnership to Improve End-Of-Life Care The Minnesota partnership began in 1997 when representatives from three large health insurers began discussing a joint project to improve end-of-life care for Minnesotans. The partnership also staffed a 26-member state commission to identify and address public policy barriers to good care, with a focus on state (60) (61) funding, education and licensure. While the partnership is in transition to refine its mission and search for a new host agency, board chair Mary Lou Irvine is the contact: mary.l.irvine@healthpartners.com. Missouri End-of-Life Coalition The Missouri coalition was formed in 1998 to foster cooperation, education and research to promote high-quality care for the dying. It develops and promotes public awareness projects that educate health care providers, students, policy- makers and the public regarding optimal care; fosters collaborative research efforts; and promotes advance care planning that enables dying persons, loved ones and caregivers to express their needs and expectations. The coalition has two current projects: work with the state Emergency Medical Services Bureau to implement local EMS unit policies that honor out-of-hospital DNR order re- quests; and collaboration on an end-of-life care manual to guide policies and procedures in nursing facilities. Widespread distribution will be followed by regionalized training. Contact: Cindy Baird, Executive Director, Missouri Hospice & Palliative Care Association, 3905 Stonewall Avenue, Independence, MO 64055. Phone: (816) 350-7702. E-mail: cindy@mohospice.org. Nebraska Coalition for Compassionate Care The Nebraska coalition has a number of educational, awareness and coalition- building efforts aimed at physicians, nursing home residents and the general public. Two priority activities are: promotion of a new publication, An Educa- tional Guide on End-of-Life Care Law and Public Policy in Nebraska, which ex- plains how health care professionals can offer the best care without violating ap- plicable state laws; and a joint project with the Nebraska Hospice Association to launch an initiative that will measure quality of life and satisfaction with care, and monitor health care dollars spent on end-of-life care. Contact: Greg Schleppenbach, Operations Board Chair, NCCC, P.O. Box 94714, Lincoln, NE 68509-4714. Phone: (402) 477-0204. E-mail: gregschlepp@alltel.net. Web: www.nebrccc.org. Nevada Center for Ethics and Health Policy The Nevada Center for Ethics and Health Policy carries out activities initiated by the State’s Attorney General and outlined in the statewide plan, “Death with Dignity and Caring in the State of Nevada.” Housed at the University of Nevada, Reno, the program trains teams of clinicians drawn from underserved areas of Nevada; carries out statewide campaigns focused on advance care planning; staffs continuing education programs for community health nurses; works with licensure boards, professional associations and other institutions to integrate end-of-life policies that reflect recent changes in Nevada law; and organizes interdisciplinary conferences for doctors and nurses on pain relief practices and what it means to have a dignified death. Contact: Noel Tiano, Th.D, Executive Director, Nevada Center for Ethics and Health Policy, University of Nevada/339, Reno, NV 89557-0133. Phone: (775) 327-2309. E-mail: noel@unr.edu. Web: www.unr.edu/ncehp. New Hampshire Partnership for End-of-Life Care The New Hampshire partnership is driven by findings from a 1998 statewide study, “Death in New Hampshire: A Review of Medical Charts.” The centerpiece of its activity is a series of regional education initiatives across the state to help patients and families engage in advance care planning and complete directives. A public information campaign promotes the importance of talking about treatment preferences and reinforces the local education initiatives. Workshops and quality improvement efforts inform health care professionals, insurers and others about best practices related to advance care planning. Related efforts are designed to encourage health and spiritual care providers to talk about advance care planning. Contact: Shawn LaFrance, M.S., M.P.H., Vice President, Foun- dation for Healthy Communities, 125 Airport Road, Concord, NH 03301. Phone: (603) 225-0900. E-mail: slafrance@nhha.org. Web: www.fhconline.org. New Jersey Comfort Care Coalition Housed at New Jersey Health Decisions, the coalition has 30 participating or- ganizations. The group has created interdisciplinary training for health pro- fessions students and clinicians, new models to finance care, and a compre- hensive campaign for public education and dialogue. The coalition recently co-sponsored an intensive ethics conference with the New York Citizens’ Com- mittee on Health Decisions, “In the Wake of Devastation: Dealing with Trauma, Stress and Grief.” Contact: Stephanie G. Levy, Project Manager, New Jersey Health Decisions, 13 Rockland Terrace, 1st Floor, Verona, NJ 07044. Phone: (973) 857-5552. E-mail: stevilevy@aol.com. North Carolina: The Carolinas Center for Hospice and End-of-Life Care The Carolinas Center has developed an infrastructure for statewide community outreach that includes 35 local end-of-life care coalitions, 30 advance care planning (ACP) instructors, and numerous statewide organizations to which it provides consultation, networking and resources. Certified ACP instructors have trained more than 450 health care professionals and community leaders and distributed more than 20,000 ACP educational materials to help consumers plan and communicate their wishes. A comprehensive Web site in- cludes an end-of-life resource locator as well as online resources. A quality (62) (63) improvement project provides intensive education in pain management and end- of-life care for staff in nursing homes. Contact: Gwynn Sullivan, R.N., M.S.N., Director of NC Community Outreach, The Carolinas Center, 2400 Weston Parkway, P.O. Box 4449, Cary, NC 27519-4449. Phone: (919) 677-4117. E-mail: gsullivan@carolinasendoflifecare.org. Web: www.carolinasendoflifecare.org. North Dakota Matters of Life & Death Project The Matters of Life & Death Project is a coalition of more than 50 organizations, individuals and agencies in North Dakota working together on initiatives to improve care at the end of life. Initiated in 1999, the project has implemented interdisciplinary strategies in four key areas: professional education; services and access to end-of-life care; public education; and advance care planning. The project strives to create a more supportive environment that encourages advance planning and provides early access to excellent care that addresses the physical, psychological, spiritual and social needs of dying people and their family. Contact: Bruce Levi, J.D., Project Director/Director of Legal Affairs, North Dakota Medical Association, Box 1198, Bismarck, ND 58502. Phone: (701) 223-9475. E-mail: blevi@ndmed.com. Web: www.ndmed.com. Oklahoma Alliance for Better Care of the Dying The alliance (OkABCD) has collected data from focus groups and town hall meetings in several cities to document citizens’ experiences with end-of-life care. OkABCD focuses on several key initiatives: (1) a public awareness campaign that encourages older adults to talk with their loved ones and physicians about their care preferences; (2) a speaker’s bureau that shares in- formation on various end-of-life issues; (3) interdisciplinary workshops that meet the professional education needs of physicians, nurses, nursing home ad- ministrators, social workers, physician assistants, pharmacists, emergency medical technicians, clergy and other concerned professionals; and (4) meetings with directors of nursing homes, state regulators and surveyors to resolve misunderstandings about hospice care in nursing homes, pain as- sessment and other regulatory topics. Contact: Linda Edmondson, L.C.S.W., Executive Director, Oklahoma Association for Healthcare Ethics, 228 Robert S. Kerr Boulevard, Suite 300, Oklahoma City, OK 73102-5201. Phone: (405) 236- 2280. E-mail: leokabcd@swbell.net. Rhode Island: Improving Quality of Care for Our Most Vulnerable Population The Rhode Island program has experienced success in two key areas: advance care planning and pain management. The Attorney General’s office has put to- gether a legal steering committee to examine current advance directive forms and explore standardization of their use in long-term care facilities and by emergency medical health providers. The Pain Management/Public Policy/ Professional Education task force has supported a Brown/Rhode Island Con- tinuous Quality Improvement Pain Management project, which is collecting data from participating nursing homes. The Rhode Island Department of Health initiated a statewide “Pain Awareness Week” in cooperation with the Attorney General’s Health Care Advocate. Contact: Debra DeSilva, Project Coordinator, Brown University, Box G-H Hemisphere Building, LL, 167 Angell Street, Prov- idence, RI 02912. Phone: (401) 863-9628. E-mail: debra_desilva@brown.edu. Web: www.chcr.brown.edu/commstate/homepagewithframes.htm. Tennesseans End-of-Life Partners The coalition (TELP) focuses on defining and promoting best practices in end- of-life care. TELP has implemented a statewide survey of physicians regarding their perceived competencies and concerns in providing optimal end-of-life care. In collaboration with the State Health Department, TELP worked with the Board for Licensing Healthcare Facilities to amend its Rules & Regulations to address end-of-life care and pain management for all licensed health care fa- cilities, including hospitals, nursing homes, ambulatory surgery, residential hospice and home care organizations. The group also conducted training sessions on pain management and end-of-life care at the State Surveyors an- nual meeting. Contact: Norma Lindsey, TELP, c/o St. Mary’s Medical Center, 900 East Oak Hill Avenue, Tower 2, Knoxville, TN 37917. Phone: (865) 545-7166. E-mail: nlindsey@stmaryshealth.com. Texas Partnership for End-of-Life Care The Texas partnership (TxPEC) has launched 12 local and regional partnerships serving Texans in 20 cities. The organization regularly offers educational opportu- nities to health care and social service professionals as well as the faith community. It has sponsored EPEC training, developed a clergy project, held conferences and conducted consumer polls on end-of-life attitudes in five communities. Regional task forces are addressing such issues as service coordination in nursing homes, grief and bereavement training, bilingual staff recruitment, and development of residential hospice facilities. The partnership is planning a conference in 2004 to promote diversity and cultural exchange. Contact: Suze Miller, Executive Director, TxPEC, 3710 Cedar Street, Box 22, Suite 275, Austin, TX 78705. Phone: (512) 453-9600. E-mail: info@txpec.org. Web: www.txpec.org. Utah Partnership to Improve End-of-Life Care The Utah partnership has four major goals: (1) to increase public awareness of end-of-life issues; (2) to improve professional practices; (3) to provide educa- (64) (65) tional assistance on policy that affects end-of-life care; and (4) to conduct meetings that bring together care providers and the loved ones of people who have died. The partnership’s Web site is widely used by consumers seeking information on end-of-life care. The group also is participating in an ad hoc committee that is developing a form like Oregon’s POLST (Physician Orders for Life-Sustaining Treatment). Future efforts may include promoting palliative care for children and involving the clergy. Contacts: Maureen Henry or Kim Segal, Co-Project Managers, HealthInsight, 348 E. 4500 South, Suite 300, Salt Lake City, UT 84107. Phone: (801) 892-0155. E-mail: mhenry@ healthinsight.org. Web: www.carefordying.org. Washington State End-of-Life Consensus Coalition The Washington coalition has hosted numerous conferences and workshops across the state and supported the creation of multidisciplinary clerkships. Cur- rently the group is working in three areas: (1) to create an interdisciplinary con- tinuing medical education pilot program for the Washington State Medical As- sociation’s annual meeting, which will focus on communication and symptom management to provide comfort to patients and their families; (2) to help create a pain management resource for health care professionals; and (3) to host an end-of-life coalition meeting in 2003. The coalition engages policy leaders in addressing the regulatory barriers to honoring advance directives. Contact: Graham Short, Communications Coordinator, Washington State Medical Asso- ciation, 2033 Sixth Avenue, Suite 1100, Seattle, WA 98122. Phone: (206) 441- 9762. E-mail: gfs@wsma.org. West Virginia Initiative to Improve End-of-Life Care The West Virginia program uses a multidisciplinary approach and strong public participation to improve end-of-life care for all state residents. Current activities include a plan to initiate a series of community discussions, “Dispelling the Myths about Pain,” to be held with civic and community groups in senior centers, churches, public libraries and other public locations. A minority issues task force has begun to work on planning a possible conference for African- American clergy. The group is also seeking funds to film a documentary about the end-of-life care experiences of African Americans in West Virginia. The policy task force is working on minor changes to the DNR order and to the West Virginia Health Care Decisions Act that would include wording about the use of the POLST form. The palliative care nurse-educators group continues to provide palliative care education and consultation with nursing homes and rural hospitals throughout the state. The professional education task force hopes to develop a social work track at the West Virginia University School of Social Work Summer Institute on Aging. Contact: Jim Keresztury, L.C.S.W., Physician Orders for Life- Sustaining Treatment (POLST) is a one-page, two-sided document de- signed to help health care providers honor the end- of-life treatment desires of their patients. The document is a physician order form that follows patient wishes and treatment intentions and thereby enhances the ap- propriateness and quality of patient care. It is not intended to be completed by the patient or the patient’s family. It is not an advance directive, which in Oregon must follow statutory wording. The POLST form is easily recognized because of its bright pink color and standardized format. It uses language to convey physician orders about specific medical treatment that is understandable to nursing home staff, home health/hospice personnel, covering physicians, emergency medical services and loved ones of the patient. A.C.S.W., M.B.A., Project Manager/Associate Director, West Virginia University Center for Health Ethics and Law, 1195 Health Sciences North, P.O. Box 9022, Morgantown, WV 26506-9022. Phone: (304) 293-7618. E-mail: jkeresztury@hsc.wvu.edu. Web: www.wvinitiative.org. Community-State Partnerships to Improve End-of-Life Care National Program Office, Midwest Bioethics Center, 1021 Jefferson Street, Kansas City, MO 64105. Phone: (816) 221-1100. Contacts: Myra Christo- pher, National Program Director. E-mail: myra@midbio.org. Jacqueline Talman, M.S.W., L.C.S.W., Deputy Director. E-mail: jtalman@midbio.org. Web: www.midbio.org. (66) Appendix Appendix METHODOLOGY The idea for this report came out of a 2001 discussion among the end-of-life care experts who serve as conveners of Last Acts’ 11 committees. Jim Towey, at that time co-convener of the Last Acts Family Committee, volunteered to steer the process to produce it. Jim consulted and received comments and sug- gestions from many experts in the end-of-life field who helped develop initial measures for rating the states. They recommended that the criteria be quan- tifiable, and that each should represent an important aspect of end-of-life care. Staff did an initial search for data sources and presented draft measures and po- tential data to the Last Acts committee conveners. (Listings of both groups appear on pages 86 and 87.) Based on their suggestions and the advice of ad- ditional experts and reviewers, staff revised criteria and, in some cases, located new data sources. The data ultimately used, although accurate and as up-to-date as possible, do not adjust for variations in public programs and morbidity factors, nor can they show very real local differences in care within states. Data were obtained pri- marily from publicly available sources (e.g., Web sites, published books and special projects). The following sections describe the data sources and special considerations for each measure used. Quality of state advance directive laws, 2002 (70) State Encourages single, comprehensive AD statute Avoids mandatory forms or language (in proxy or combined proxy/living will) Source: American Bar Association, Commission on Law and Aging. State Health Decisions Legislative Update, 2002, www.abanet.org; Sabatino, CP. “The Legal and Functional Status of the Medical Proxy: Suggestions for Statutory Reform.” Journal of Law, Medicine & Ethics, 27: 552–68, 1999; Sabatino, CP, “Survey of State EMS-DNR Laws and Protocols.” Journal of Law, Medicine & Ethics, 27: 297–315, 1999. 1 STATE ADVANCE DIRECTIVE POLICIES The ratings are based on an analysis done by Charles Sabatino, J.D., in 2002 that looked at six aspects of state statutes. We placed each state in one of five possible groups according to its overall score (range of possible scores was 0.0–5.0). *MA, MI & NY have only proxy statutes but are treated as compre- hensive statutes because health care instructions may be included in any directive. **As MA, MI & NY have only proxy statutes, precedence to agent’s authority is inherent in the statutory structure. Alabama • Alaska Arizona • • Arkansas • California • • Colorado • Connecticut • • Delaware • • District of Columbia • Florida • • Georgia • Hawaii • • Idaho • Illinois • Indiana Iowa • Kansas Kentucky • Louisiana • Maine • • Maryland • • Massachusetts •* • Michigan •* • Minnesota • • Mississippi • • Missouri • Montana • Nebraska • Nevada New Hampshire New Jersey • • New Mexico • • New York •* • North Carolina • North Dakota • Ohio Oklahoma • Oregon • Pennsylvania • Rhode Island • South Carolina South Dakota • Tennessee • Texas Utah Vermont Virginia • • Washington • West Virginia • Wisconsin Wyoming • (71) AD statute gives precedence to agent’s authority or most recent directive over LW Default surrogates include “close friend” Has statewide EMS-DNR protocol in place TOTAL Shaded columns count 1⁄2 point Statute authorizes default surrogates for health care decisions, including life support • • • 3.5 • 1.0 • • 3.5 • • 3.0 • 3.0 • • • 3.5 • • 4.0 • • • • 5.0 • • 3.0 • • • • 5.0 • • • 3.5 • • • 4.5 • • 3.0 • • • • 4.0 • • 2.0 • • 2.5 • 1.0 • • 3.0 • • 3.0 • • • • 5.0 • • • 4.5 •** • 3.5 •** • 4.5 • • 3.5 • • 3.5 • • 2.5 • • 3.0 • 1.5 • • 2.0 • • 1.5 • 3.0 • • • • 5.0 •** • 3.5 • 2.0 • • • 3.0 • • 2.0 • 2.0 • • • 3.5 1.0 • • 2.5 • • 2.0 • • 2.5 • 2.0 • • • 2.5 • • • 2.5 • 0.5 • • 4.0 • • 3.0 • • • • 4.0 • • 1.5 • • 3.0 Deaths at home, in a hospital, and in a nursing home, by state, 1997 (72) State Deaths at home in 1997 (%) Source: Brown University Center for Gerontology and Health Care Research, www.chcr.brown.edu/dying/ forresearcherssod.htm. 2 LOCATION OF DEATH Data are from 1997 and were analyzed by the Brown Uni- versity Center for Gerontology and Health Care Research.69 The center used data from the Mortality Files compiled by the National Center for Health Statistics to demonstrate where chronically ill Americans died in 1997. We report per- centages of deaths occurring at home, in a hospital, and in a nursing home. Alabama 29.2 Alaska 35.8 Arizona 25.5 Arkansas 25.0 California 26.9 Colorado 29.0 Connecticut 21.3 Delaware 27.7 District of Columbia 14.7 Florida 27.4 Georgia 19.3 Hawaii 22.7 Idaho 32.3 Illinois 19.5 Indiana 23.1 Iowa 20.9 Kansas 23.2 Kentucky 24.6 Louisiana 21.0 Maine 23.8 Maryland 26.7 Massachusetts 22.4 Michigan 25.6 Minnesota 23.7 Mississippi 21.5 Missouri 23.2 Montana 27.7 Nebraska 18.8 Nevada 31.7 New Hampshire 23.6 New Jersey 26.9 New Mexico 32.1 New York 21.2 North Carolina 23.9 North Dakota 18.4 Ohio 23.1 Oklahoma 24.1 Oregon 35.1 Pennsylvania 23.2 Rhode Island 20.9 South Carolina 25.1 South Dakota 19.3 Tennessee 19.8 Texas 23.3 Utah 34.1 Vermont 29.6 Virginia 24.9 Washington 30.0 West Virginia 26.5 Wisconsin 24.5 Wyoming 26.6 (73) Deaths in a hospital in 1997 (%) Deaths in a nursing home in 1997 (%) 56.5 14.3 43.5 20.7 42.8 31.7 55.1 19.9 48.4 24.7 40.6 30.4 48.0 30.7 46.4 25.9 71.9 13.4 51.7 20.9 63.7 17.0 64.7 12.6 37.0 30.7 57.7 22.9 47.4 29.5 48.6 30.4 49.3 27.6 55.5 19.9 65.1 13.9 43.0 33.0 49.4 23.9 48.8 28.8 49.7 24.8 38.6 37.7 65.8 12.7 49.0 27.9 41.6 30.7 45.8 35.4 51.8 16.5 48.5 27.9 56.9 16.2 46.7 21.3 61.8 17.0 53.3 22.8 48.3 33.2 48.8 28.1 53.4 22.5 32.5 32.4 49.1 27.7 45.8 33.3 56.5 18.4 45.8 34.9 61.5 18.7 57.3 19.4 38.9 27.0 38.4 31.9 54.0 21.0 35.7 34.3 58.0 15.5 40.3 35.2 42.8 30.6 People over 65 who used hospice in the last year of life, by state, 2000 (74) State Deaths with hospice stays (%) Source: Special analysis by the research team for the Dartmouth Atlas of Health Care, www.dartmouthatlas.org. 3 HOSPICE USE The first measure represents the percentage of Medicare- eligible non-HMO patients who were receiving hospice care at the time of their death. The second measure is the median length of stay in hospice. Data for the hospice care measure are based on a special analysis by the research team for the Dartmouth Atlas of Health Care Working Group and are for the year 2000. The length of stay data are from 2001 and were obtained from the National Hospice and Palliative Care Organization’s membership database. The data included in the length of stay measure are from states with five or more reporting hospice agencies. Alabama 23.5 Alaska 4.9 Arizona 42.0 Arkansas 18.8 California 24.2 Colorado 36.8 Connecticut 19.4 Delaware 24.4 District of Columbia 13.8 Florida 35.3 Georgia 24.2 Hawaii 19.1 Idaho 20.8 Illinois 25.0 Indiana 18.8 Iowa 23.1 Kansas 22.5 Kentucky 20.8 Louisiana 19.7 Maine 9.1 Maryland 20.5 Massachusetts 18.3 Michigan 28.2 Minnesota 21.8 Mississippi 17.6 Missouri 22.0 Montana 17.5 Nebraska 20.0 Nevada 28.8 New Hampshire 17.9 New Jersey 18.7 New Mexico 29.6 New York 15.8 North Carolina 18.9 North Dakota 18.1 Ohio 26.9 Oklahoma 28.4 Oregon 31.1 Pennsylvania 21.2 Rhode Island 18.3 South Carolina 19.3 South Dakota 12.8 Tennessee 15.4 Texas 28.4 Utah 24.9 Vermont 14.9 Virginia 18.1 Washington 24.1 West Virginia 16.6 Wisconsin 19.5 Wyoming 14.5 (75) Median number of days in hospice, by state, 2001 State Median length of hospice stay Alabama 42.9 Alaska — Arizona 27.7 Arkansas 26.0 California 23.6 Colorado 22.5 Connecticut 21.5 Delaware — District of Columbia — Florida 18.2 Georgia 25.4 Hawaii 26.6 Idaho 25.1 Illinois 18.8 Indiana 26.7 Iowa 27.9 Kansas 25.4 Kentucky 27.5 Louisiana 33.2 Maine 27.4 Maryland 20.5 Massachusetts 18.1 Michigan 26.2 Minnesota 23.2 Mississippi 37.0 Missouri 24.1 Montana 25.2 Nebraska 25.4 Nevada — New Hampshire 20.8 New Jersey 21.1 New Mexico 35.2 New York 18.9 North Carolina 32.2 North Dakota 20.9 Ohio 17.5 Oklahoma 25.9 Oregon 23.9 Pennsylvania 24.3 Rhode Island 13.7 South Carolina 34.1 South Dakota 26.8 Tennessee 23.6 Texas 25.0 Utah 19.3 Vermont 27.0 Virginia 24.9 Washington 23.6 West Virginia 29.4 Wisconsin 18.0 Wyoming 15.2 Source: National Hospice and Palliative Care Organization. (76) Hospitals reporting pain management programs, hospice programs, and palliative care programs, by state, 2000 State Number of hospitals reporting Source: Hospital Statistics. American Hospital Association, 2000. 4 HOSPITAL END-OF-LIFE CARE SERVICES These measures show the percentage of hospitals self- reporting end-of-life services— specifically defined as pain management, hospice or a palliative care program. Data on hospitals that offer these services are from the 2000 American Hospital Association annual survey of all U.S. hos- pitals; the response rate for this survey in 2000 was 84 percent.70 Each service was considered separately. Alabama 78 Alaska 16 Arizona 50 Arkansas 91 California 244 Colorado 64 Connecticut 40 Delaware 6 District of Columbia 11 Florida 201 Georgia 171 Hawaii 20 Idaho 36 Illinois 200 Indiana 106 Iowa 125 Kansas 144 Kentucky 99 Louisiana 123 Maine 40 Maryland 62 Massachusetts 86 Michigan 149 Minnesota 116 Mississippi 102 Missouri 143 Montana 58 Nebraska 80 Nevada 19 New Hampshire 29 New Jersey 75 New Mexico 41 New York 193 North Carolina 112 North Dakota 34 Ohio 158 Oklahoma 111 Oregon 56 Pennsylvania 198 Rhode Island 16 South Carolina 77 South Dakota 56 Tennessee 100 Texas 476 Utah 41 Vermont 14 Virginia 90 Washington 70 West Virginia 66 Wisconsin 137 Wyoming 26 (77) Hospitals with pain management program (%) Hospitals with hospice program (%) Hospitals with palliative care program (%) 41.0 37.5 46.0 33.0 42.6 50.0 62.5 66.7 72.7 53.7 40.4 40.0 38.9 53.0 54.7 32.0 20.1 35.4 30.9 45.0 59.7 57.0 53.0 25.0 4.9 46.9 24.1 23.8 10.5 62.1 68.0 24.4 61.1 50.0 32.4 53.8 27.0 41.1 57.6 56.3 42.9 28.6 35.0 30.9 46.3 42.9 56.7 40.0 28.8 58.4 19.2 16.7 6.3 20.0 25.3 20.5 20.3 57.5 16.7 9.1 17.9 14.6 5.0 30.6 32.0 34.9 44.8 14.6 15.2 10.6 17.5 19.4 20.9 30.2 39.7 12.7 27.3 34.5 30.0 5.3 34.5 25.3 19.5 19.2 24.1 38.2 29.1 17.1 39.3 30.3 6.3 14.3 39.3 21.0 10.5 19.5 35.7 27.8 22.9 16.7 15.3 42.3 6.4 18.8 12.0 7.7 13.1 17.2 32.5 16.7 54.5 12.9 10.5 10.0 8.3 17.5 21.7 16.0 16.0 11.1 10.6 15.0 25.8 23.3 20.1 8.6 0.0 2.1 15.5 5.0 5.3 34.5 24.0 14.6 20.2 14.3 5.9 22.8 10.8 19.6 21.7 6.3 1.3 5.4 12.0 9.2 14.6 42.9 17.8 17.1 18.2 1.5 11.5 (78) Source: Special analysis by the research team for the Dartmouth Atlas of Health Care, www.dartmouthatlas.org. 5 CARE IN ICUs AT THE END OF LIFE Data are from 2000 and were a special analysis of state-level data prepared by the Dart- mouth Atlas of Health Care Working Group.71 The group established the percentage of Medicare beneficiaries who had had an ICU or CCU hospi- talization during their last six months of life, and the length of the stay on a day rate basis per beneficiary who had died. Finally, the ICU days were totaled across all hospital admissions during the last six months of life, based on Medicare claims data. Note that states received a grade for the third set of data only. People over 65 with 7 or more ICU days during the last 6 months of life, by state, 2000 State Beneficiaries with an ICU or CCU stay (%) ICU/CCU stay day rate per decedent Alabama Alaska Arizona Arkansas California Colorado Connecticut Delaware District of Columbia Florida Georgia Hawaii Idaho Illinois Indiana Iowa Kansas Kentucky Louisiana Maine Maryland Massachusetts Michigan Minnesota Mississippi Missouri Montana Nebraska Nevada New Hampshire New Jersey New Mexico New York North Carolina North Dakota Ohio Oklahoma Oregon Pennsylvania Rhode Island South Carolina South Dakota Tennessee Texas Utah Vermont Virginia Washington West Virginia Wisconsin Wyoming 2.5 2.4 1.7 2.2 2.3 1.0 2.0 3.2 2.9 3.0 2.5 1.3 1.4 2.8 2.7 1.6 1.9 2.6 2.3 1.7 2.7 1.6 2.6 1.4 2.4 2.5 1.5 2.1 2.1 1.4 3.8 1.7 2.3 2.7 1.3 2.5 1.9 0.8 2.4 1.8 3.2 1.7 3.1 2.7 1.5 1.5 2.9 1.5 2.6 1.6 1.8 Decedents with 7 or more ICU/ CCU days (%) 11.5 11.7 8.3 9.9 10.8 4.7 9.0 15.7 12.8 14.9 12.0 5.8 6.6 13.7 13.3 7.5 9.0 12.7 11.3 7.2 12.3 7.0 12.5 6.2 11.4 11.7 6.7 9.3 10.7 5.9 17.3 8.3 10.2 12.5 5.5 12.1 9.0 3.4 11.5 8.0 15.6 7.9 14.9 13.6 6.8 6.3 13.5 7.0 12.5 6.9 8.4 32.7 29.3 22.2 31.2 23.8 17.3 25.2 37.0 32.0 32.2 32.7 18.1 23.6 33.8 34.3 25.0 27.3 33.1 30.2 25.5 31.5 22.0 33.3 21.3 31.1 31.0 25.4 26.2 25.3 21.6 37.2 25.3 26.0 33.9 22.2 30.9 27.5 15.2 29.3 21.2 37.1 24.1 35.4 33.2 24.2 23.7 33.8 24.0 31.6 24.9 25.9 (79) Nursing home residents in persistent pain, by state, 1999 State Patients in persistent pain in nursing homes (%) Alabama 37.3 Alaska 45.8 Arizona 46.6 Arkansas 41.9 California 44.4 Colorado 47.2 Connecticut 38.1 Delaware 41.7 District of Columbia 42.9 Florida 42.5 Georgia 44.4 Hawaii 33.3 Idaho 54.9 Illinois 41.9 Indiana 42.1 Iowa 37.2 Kansas 45.4 Kentucky 40.6 Louisiana 43.0 Maine 41.3 Maryland 38.5 Massachusetts 38.1 Michigan 39.2 Minnesota 39.7 Mississippi 38.0 Missouri 41.0 Montana 48.4 Nebraska 36.8 Nevada 51.1 New Hampshire 41.9 New Jersey 37.2 New Mexico 45.1 New York 37.1 North Carolina 40.4 North Dakota 43.8 Ohio 44.4 Oklahoma 42.3 Oregon 39.6 Pennsylvania 38.8 Rhode Island 41.4 South Carolina 37.7 South Dakota 45.3 Tennessee 42.6 Texas 42.4 Utah 51.7 Vermont 44.2 Virginia 39.1 Washington 44.3 West Virginia 46.9 Wisconsin 40.8 Wyoming 43.1 6 PAIN AMONG NURSING HOME RESIDENTS Data are from 1999 and were analyzed by the Brown Uni- versity Center for Gerontology and Health Care Research.72 The center analyzed data from the Minimum Data Set, the nursing home resident as- sessment instrument that all nursing homes are required to complete. Rates of persistent severe pain were calculated by using the number of residents reported to be in moderate daily or episodic excruciating pain at a first assessment and again at a second assessment 60 to 180 days later, divided by the total number of people reporting pain at the first assessment, to achieve the percentages shown here. Source: Brown University Center for Gerontology and Health Care Research, www.chcr.brown.edu/ dying/forresearcherspsp.htm. (80) Strength of state pain policies, 2001 State Policy explicitly addresses needs of terminally ill patients (1 point) State has a comprehensive pain management policy (1 point = few provisions, 2 = some, 3 = most/all) Source: Based on Achieving Balance in Federal & State Pain Policy, July 2000, and updated in the Annual Review of State Pain Policies 2000 (published February 2001) and Annual Review of State Pain Policies 2001 (published February 2002) from the Pain and Policy Studies Group of the University of Wisconsin’s Compre- hensive Cancer Center, Madison, Wiscon- sin. More recent information may be available at the group’s Web site: www.medsch.wisc.edu/painpolicy. 7 STATE PAIN POLICIES We developed a scoring system that was used to score the data in Achieving Balance in Federal & State Pain Policy, prepared by the Pain and Policy Studies Group of the University of Wisconsin.73 The range of possible scores was –3 to +9. (In the chart at right 0 = no policies found; doesn’t apply.) Note that while this criterion is a measure of the pain policy environment in a state, it is not a measure of the actual practice of pain management. Alabama 1 3 Alaska 0 0 Arizona 0 2 Arkansas — — California 1 2 Colorado 1 0 Connecticut 0 0 Delaware 0 0 District of Columbia 0 0 Florida 1 3 Georgia 0 0 Hawaii 0 0 Idaho 0 0 Illinois 0 0 Indiana 0 0 Iowa 0 1 Kansas 1 3 Kentucky 2 3 Louisiana 0 1 Maine 1 2 Maryland 1 1 Massachusetts 1 0 Michigan 1 0 Minnesota 1 3 Mississippi 1 0 Missouri 1 3 Montana 0 0 Nebraska 1 3 Nevada 1 3 New Hampshire 1 2 New Jersey 1 0 New Mexico 0 0 New York 1 1 North Carolina 1 2 North Dakota 0 0 Ohio 0 0 Oklahoma 0 1 Oregon 1 0 Pennsylvania 0 3 Rhode Island 1 2 South Carolina 0 3 South Dakota 0 3 Tennessee 0 2 Texas 0 0 Utah 1 3 Vermont 0 0 Virginia 0 0 Washington 1 2 West Virginia 1 1 Wisconsin 0 0 Wyoming 0 0 (81) Includes “dis- couraging” pro- visions (minus 1 to 3 points, with –1 few, –2 some, –3 significant restrictions) Describes the steps in good medical practice for pain management (2 points) Expresses concern about the under- treatment of pain (1 point) TOTAL Reassures physicians on their ability to prescribe opioids for pain management (2 points) 0 2 2 0 8 –1 0 0 0 –1 –1 2 2 0 5 –1 2 — — 1 –3 2 2 1 5 –1 2 2 1 5 –1 0 0 0 –1 –1 0 0 0 –1 0 0 0 0 0 –1 2 2 1 8 –1 0 2 0 1 –1 0 0 0 –1 –1 0 0 0 –1 –1 0 0 0 –1 –2 0 0 0 –2 –1 0 2 0 2 0 2 2 1 9 –2 2 2 0 7 –2 0 0 0 –1 0 2 2 0 7 0 2 2 1 7 –1 0 0 1 1 –2 2 0 0 1 0 2 0 0 6 –1 0 0 1 1 0 2 0 0 6 –1 2 2 1 4 0 2 2 1 9 –1 2 2 0 7 –1 0 2 0 4 –2 0 2 0 1 0 2 2 0 4 –3 0 0 0 –1 0 2 2 1 8 0 2 0 0 2 0 0 0 0 0 0 2 2 0 5 –1 2 0 1 3 –1 2 2 1 7 –2 2 2 1 6 –2 2 0 1 4 0 0 0 0 3 –3 2 2 0 3 –2 2 0 0 0 –1 2 2 1 8 –2 0 2 1 1 0 0 2 0 2 0 2 2 1 8 0 2 2 1 7 –1 0 0 0 –1 0 2 2 0 4 (82) Percentage of general primary care and primary care subspecialty physicians who are certified in palliative medicine, 2000 State Total number of physicians Source: American Board of Hospice and Palliative Medicine; www.abhpm.org. American Medical Association. Physician Characteristics and Distribution in the US, 2002–2003 Edition (Chicago: American Medical Association Press, 2002). 8 PALLIATIVE CARE- CERTIFIED PHYSICIANS AND NURSES This measure approximates the availability of palliative care-certified physicians and nurses using the percentage of clinicians who are certified in palliative care. Data on the number of palliative care- certified physicians and nurses are from the American Board of Hospice and Palliative Medicine’s Web site74 and the Hospice and Palliative Nursing Association’s Web site, respec- tively.75 Data on the number of primary care physicians are for 2000 and are from the American Medical Associa- tion.76 Data on the number of registered nurses are estimated for the year 2000 and are from the U.S. Department of Health and Human Services, Health Resources and Services Administration.77 While this measure approx- imates the percentage of pal- liative care-certified physicians and nurses statewide, it does not capture the actual avail- ability at local levels. Alabama Alaska Arizona Arkansas California Colorado Connecticut Delaware District of Columbia Florida Georgia Hawaii Idaho Illinois Indiana Iowa Kansas Kentucky Louisiana Maine Maryland Massachusetts Michigan Minnesota Mississippi Missouri Montana Nebraska Nevada New Hampshire New Jersey New Mexico New York North Carolina North Dakota Ohio Oklahoma Oregon Pennsylvania Rhode Island South Carolina South Dakota Tennessee Texas Utah Vermont Virginia Washington West Virginia Wisconsin Wyoming 9,887 1,362 12,250 5,711 97,213 11,692 13,279 2,099 4,488 46,013 19,324 3,887 2,370 35,943 13,461 5,927 6,486 9,468 12,207 3,598 23,449 28,886 25,209 14,257 5,399 14,061 2,188 4,300 4,025 3,438s 27,462 4,565 78,524 21,118 1,603 30,229 6,565 9,312 39,603 3,814 9,689 1,708 15,360 46,904 5,041 2,318 20,362 16,693 4,442 13,954 1,013 (83) Total primary care plus primary care subspecialty physicians Physicians certified by the American Board of Hospice and Palliative Medicine Certified doctors as % of total primary care + subspecialty physicians 4,264 634 4,560 2,476 37,624 4,672 5,207 833 1,679 16,545 8,064 1,600 926 15,426 5,627 2,359 2,653 3,884 4,908 1,408 9,233 11,092 10,353 6,217 2,236 5,698 828 1,863 1,592 1,334 11,498 1,874 31,414 8,604 717 12,405 2,690 3,611 15,357 1,576 4,001 748 6,453 19,096 1,944 939 8,382 6,688 1,856 5,809 420 9 1 17 5 96 16 12 3 5 69 11 5 0 46 11 9 12 11 11 11 28 20 44 18 5 14 8 3 3 12 21 17 72 16 1 51 11 13 29 4 7 2 17 64 8 6 14 20 6 21 2 0.21 0.16 0.37 0.20 0.26 0.34 0.23 0.36 0.30 0.42 0.14 0.31 0.00 0.30 0.20 0.38 0.45 0.28 0.22 0.78 0.30 0.18 0.43 0.29 0.22 0.25 0.97 0.16 0.19 0.90 0.18 0.91 0.23 0.19 0.14 0.41 0.41 0.36 0.19 0.25 0.18 0.27 0.26 0.34 0.41 0.64 0.17 0.30 0.32 0.36 0.48 (84) Percentage of full-time-equivalent nurses (estimated) who are certified in palliative care, 2000 State Alabama Alaska Arizona Arkansas California Colorado Connecticut Delaware District of Columbia Florida Georgia Hawaii Idaho Illinois Indiana Iowa Kansas Kentucky Louisiana Maine Maryland Massachusetts Michigan Minnesota Mississippi Missouri Montana Nebraska Nevada New Hampshire New Jersey New Mexico New York North Carolina North Dakota Ohio Oklahoma Oregon Pennsylvania Rhode Island South Carolina South Dakota Tennessee Texas Utah Vermont Virginia Washington West Virginia Wisconsin Wyoming 30,987 4,264 28,575 17,147 154,002 26,556 26,407 6,024 8,877 112,735 49,746 7,516 6,765 87,457 38,780 25,897 21,204 30,064 34,510 10,936 38,291 59,884 66,452 37,357 19,652 47,337 6,327 13,826 9,320 9,446 56,868 10,295 136,663 62,427 5,779 84,188 19,684 21,498 104,392 9,389 25,877 7,463 43,757 116,252 10,940 4,596 43,602 33,486 13,831 38,498 3,417 Source: Hospice and Palliative Nursing Association; www.hpna.org/. HRSA, Division of Nursing. The National Survey of Registered Nurses, March 2000: Preliminary Findings February 2001. Estimated full-time-equivalent registered nurses (85) Number of nurses certified by the Hospice and Palliative Nursing Association Certified nurses as % of full-time- equivalent/registered nurses 0.26 0.14 0.61 0.26 0.36 0.35 0.48 0.70 0.09 0.60 0.33 0.32 0.22 0.33 0.34 0.48 0.39 0.69 0.19 0.55 0.51 0.34 0.46 0.45 0.22 0.17 0.89 0.43 0.25 0.84 0.40 0.51 0.28 0.36 0.24 0.65 0.52 0.52 0.46 0.16 0.18 0.12 0.18 0.38 0.19 1.13 0.47 0.46 0.55 0.50 0.41 82 6 175 44 548 94 127 42 8 676 165 24 15 288 132 124 83 208 64 60 194 202 306 168 44 79 56 60 23 79 225 53 388 222 14 546 102 112 480 15 46 9 78 442 21 52 205 155 76 192 14 (86) CONVENERS, LAST ACTS COMMITTEES Diversity Committee Phyllis Pennese Patient and Community Services Supervisor Advocate Hospice Chicago, Illinois Jose Lusende Multicultural Coordinator, Medical Social Services St. Vincent’s Hospital Indianapolis, Indiana Evaluation and Outcomes Committee Joel C. Cantor, Sc.D. Professor of Public Policy Director, Center for State Health Policy Rutgers University New Brunswick, New Jersey Joan Teno, M.D., M.S. Associate Director Center for Gerontology and Health Care Research Brown University Providence, Rhode Island Family Committee Susan Blumenfield, D.S.W. Director, Department of Social Work Services Mount Sinai Medical Center New York, New York Financing Committee Theresa Varner, M.A., M.S.W. Director, Public Policy Institute AARP Washington, D.C. Andy Schneider, J.D. Medicaid Policy, LLC Washington, D.C. Institutional Innovation Committee Joseph Fins, M.D. Director of Medical Ethics New York Presbyterian Hospital New York, New York J. Donald Schumacher, Psy.D. President and CEO National Hospice and Palliative Care Organization Alexandria, Virginia Cherry Meier, R.N., M.S.N. Long-Term Care Manager National Hospice and Palliative Care Organization Alexandria, Virginia Palliative Care Committee Colleen Scanlon, J.D., R.N. Vice President-Advocacy Catholic Health Initiatives Denver, Colorado Margaret L. Campbell, R.N. Nurse Practitioner Palliative Care Service Detroit Receiving Hospital Detroit, Michigan Policy Strategy Committee Peter Leibold, J.D. Executive Vice President/CEO American Health Lawyers Association Washington, D.C. Provider Education Committee Anne Rhome, M.P.H., R.N. Deputy Executive Director American Association of Colleges of Nursing Washington, D.C. Steve Pantilat, M.D. Assistant Clinical Professor of Medicine University of California–San Francisco San Francisco, California Spirituality Committee Christina Puchalski, M.D. Director The George Washington Institute for Spirituality and Health Washington, D.C. Frank Ostaseski Director Zen Hospice Project San Francisco, California Standards and Guidelines Committee Charles Sabatino, J.D. Assistant Director Commission on Legal Problems of the Elderly The American Bar Association Washington, D.C. (87) OTHER ADVISERS Ira Byock, M.D. Principal Investigator Life’s End Institute: Missoula Demonstration Project Missoula, Montana Myra Christopher National Program Office Director Community-State Partnerships to Improve End-of-Life Care Midwest Bioethics Center Kansas City, Missouri Stephen R. Connor, Ph.D. Vice President, Research, Development and Finance National Hospice and Palliative Care Organization Alexandria, Virginia Elliott S. Fisher, M.D., M.P.H. Associate Professor of Medicine Center for the Evaluative Clinical Sciences Dartmouth Medical School Hanover, New Hampshire Gail Hunt President National Alliance for Caregiving Bethesda, Maryland David Joranson, M.S.S.W. Director Pain & Policy Studies Group University of Wisconsin Comprehensive Cancer Center Madison, Wisconsin Steve J. McPhee, M.D. Professor of Medicine Division of General Internal Medicine University of California–San Francisco San Francisco, California Diane E. Meier, M.D. Director Hertzberg Palliative Care Institute Mount Sinai School of Medicine New York, New York Tina Phipps, Ph.D. Director Einstein Center for Urban Health Policy & Research Albert Einstein Healthcare Network Philadelphia, Pennsylvania Susan Tolle, M.D. Director Center for Ethics in Health Care Oregon Health & Sciences University Portland, Oregon Jim Towey Former President and Founder Aging with Dignity Washington, D.C. John E. Wennberg, M.D., M.P.H. Director Center for the Evaluation of Clinical Sciences Dartmouth Medical School Hanover, New Hampshire Josh Wiener, Ph.D. Principal Research Associate The Urban Institute Washington, D.C. Endnotes Endnotes 1. SUPPORT Principal Investigators. “A Controlled Trial to Improve Care for Seriously Ill Hospitalized Patients: The Study to Understand Prognoses and Pref- erences for Outcomes and Risks of Treatment (SUPPORT).” Journal of the American Medical Association, 274: 1591–1598, 1995. 2. Field MJ and Cassel CK (eds.). Committee on Care at the End of Life, Division of Health Care Services, Institute of Medicine. Approaching Death: Improving Care at the End of Life (Washington: National Academy Press, 1997). 3. The Precepts of Palliative Care, developed by the Last Acts Committee on Palliative Care, December 1997, are available at www.lastacts.org. 4. Astrow AB, Puchalski CM, Sulmasy DP. “Religion, Spirituality, and Health Care: Social, Ethical, and Practical Considerations.” American Journal of Medicine, 110(4): 283–287, 2001. 5. Post SG, Puchalski CM, Larson DB. “Physicians and Patient Spirituality: Profes- sional Boundaries, Competency, and Ethics.”Annals of Internal Medicine, 132(7): 578–583, 2000. 6. Puchalski CM. “Spirituality and End of Life Care.” In Berger AM, Portenoy RK, Weissman DE (eds.). Principles and Practice of Palliative Care and Supportive On- cology, 2nd ed. (Philadelphia: Lippincott Williams & Wilkins, 2002), 799–812. 7. Koenig HG, McCullough M, Larson DB. Handbook of Religion and Health (New York: Oxford University Press, 2001). 8. Sheehan MN. “Spirituality and Care at the End of Life.” Choices: The Newsletter of Choice In Dying, 6(2), 1997. 9. Puchalski, op. cit. 10. Puchalski CM and Romer AL. “Taking a Spiritual History Allows Clinicians to Understand Patients More Fully.” Journal of Palliative Medicine, 3(1): 129–137, 2000. 11. Association of American Medical Colleges. Report III—Contemporary Issues in Medicine: Communication in Medicine, Medical School Objectives Project (MSOP III) (Washington: Association of American Medical Colleges, 1999), 25–26. Available at www.aamc.org/meded/msop/report3.htm#task. 12. Field and Cassel, op. cit. 13. Romer A. “Taking a Spiritual History Allows Clinicians to Understand Patients More Fully: An Interview with Dr. Christina Puchalski.” Innovations in End-of-Life Care, 1(6), 1999. Available at www.edc.org/lastacts. 14. McNicol T. “The New Faith in Medicine: Believing in God May Be Good for Your Health, According to This Research.” USA Today Weekend, April 5–7, 1996. (92) 15. Lo B, Quill T, Tulsky T, for the ACP-ASIM End-of-Life Care Consensus Panel. “Discussing Palliative Care with Patients.” Annals of Internal Medicine, 130: 744–749, 1999. Available at http://38.232.17.254/ethics/lo.htm. 16. Lo B, Ruston D, Kates LW, Arnold R, Faber-Langendoen K, Puchalski CM, et al. “Discussing Religious and Spiritual Issues at the End of Life: A Practical Guide for Physicians.” Journal of the American Medical Association, 287(6): 749–754, 2002. 17. Puchalski and Romer, op. cit. 18. Ehman JW, Ott BB, Short TH, Ciampa RC, Hansen-Flaschen J. “Do Patients Want Physicians to Inquire About Their Spiritual or Religious Beliefs If They Become Gravely Ill?” Archives of Internal Medicine, 159: 1803–1806, 1999. 19. Gallup International Institute. Spiritual Beliefs and the Dying Process: A Report on a National Survey. Conducted for the Nathan Cummings Foundation and the Fetzer Institute, 1997. Available at www.ncf.org/reports/rpt_fetzer_contents.html. 20. Steinhauser KE, Christakis NA, Clipp EC, McNeilly M, McIntyre L, Tulsky JA. “Factors Considered Important at the End of Life by Patients, Family, Physicians and Other Care Providers.” Journal of the American Medical Association, 284(19): 2476–2482, 2000. 21. Ehman et al., op. cit. 22. Blackhall LJ, Frank G, Murphy ST, Michel V, Palmer JM, Azen SP. “Ethnicity and Attitudes Towards Life-Sustaining Technology.” Social Science and Medicine, 48: 1779–1789, 1999. 23. Degenholtz HD, Arnold RA, Meisel A, Lave JR. “Persistence of Racial Disparities in Advance Care Plan Documents Among Nursing Home Residents.” Journal of the American Geriatrics Society, 50: 378–381, 2002. 24. Last Acts Statement on Diversity and End-of-life Care, developed by the Last Acts Diversity Committee, in fall 2001, is available at www.lastacts.org. 25. Lynn J. “Measuring Quality of Care at the End of Life: A Statement of Principles.” Journal of the American Geriatrics Society, 45:526–527, 1997. 26. Partnership for Caring. End-of-Life Law Digest, 2002, available at www..partnership- forcaring.org; accessed 7/2/02. 27. Schwartz CE, Wheeler HB, Hammes B, Basque N, Edmunds J, Reed G, Ma Y, Li L, Tabloski P, Yanko J, U Mass End-of-Life Working Group. “Early Intervention in Planning End-of-Life Care with Ambulatory Geriatric Patients.” Archives of Internal Medicine, 162: 1611–1618, 2002. 28. Degenholtz et al., op. cit. 29. National Conference of Commissioners on Uniform State Laws. Uniform Health Care Decisions Act, 1993. 30. American Bar Association, Commission on Law and Aging. State Health Decisions Legislative Update, 2002, available at www.abanet.org/elderly. 31. Sabatino CP. “The Legal and Functional Status of the Medical Proxy: Suggestions for Statutory Reform.” Journal of Law, Medicine & Ethics, 27: 52–68, 1999. 32. Sabatino CP. “Survey of State EMS-DNR Laws and Protocols.” Journal of Law, Medicine & Ethics, 27: 297–315, 1999. 33. A 1999 Harvard Public Opinion Poll found that 71 percent of Americans would prefer to die at home. A 2002 Harris Interactive Poll found that 86 percent of Americans believe that people who have a terminal illness would most like to receive end-of-life care at home. (93) 34. Emanuel LL, von Gunten CF, Ferris FD. “Gaps in End-of-Life Care.” Archives of Family Medicine, 9: 1176–1180, 2000. 35. Wennberg J. The Dartmouth Atlas of Health Care Working Group, Center for Evaluative Clinical Science, Dartmouth Medical School, Dartmouth Atlas of Health Care, 1999. Available at www.dartmouthatlas.org/atlaslinks/99atlas.php. 36. Christakis NA and Iwashyna TJ. “Impact of Individual and Market Factors on the Timing of Initiation of Hospice Terminal Care.” Medical Care, 38: 528–541, 2000. 37. Pritchard RS, Fisher ES, Teno JM, Reding DJ, Knaus WA, Wennberg JE, Lynn J. “Influence of Patient Preferences and Local Health System Characteristics on the Place of Death.” Journal of the American Geriatrics Society, 46: 1242–1250, 1998. 38. Miller GW, Williams JR, English DDJ, Keyserling J. Delivering Quality Care and Cost-Effectiveness at the End-of-life. National Hospice and Palliative Care Organi- zation, February 2002, available at www.nhpco.org; accessed 7/2/02. 39. Ibid. 40. Ibid. 41. Ibid. 42. Covinsky KE, Landefeld CS, Teno J, Connors AF, Dawson N, Youngner S, Desbiens N, Lynn J, Fulkerson W, Reding D, Oye R, Phillips RS. “Is Economic Hardship on the Families of the Seriously Ill Associated with Patient and Sur- rogate Care Preferences?” Archives of Internal Medicine, 156(15): 1737–1741, 1996. 43. Emanuel, von Gunten, Ferris, op. cit. 44. General Accounting Office. “More Beneficiaries Use Hospice, Yet Many Factors Contribute to Shorter Stays” (GAO/HEHS-00-182). Washington, September 2000. 45. Birkmeyer JD, Birkmeyer CM, Wennberg JE, Young MP. Leapfrog Safety Standards: Potential Benefits of Universal Adoption (Washington: Leapfrog Group, 2000). 46. Leapfrog Group. “Fact Sheet: ICU Physician Staffing,” November 2000. Available at www.leapfroggroup.org/FactSheets.htm; accessed 7/2/02. 47. Nelson JE, Meier DE, Oei EJ, Nierman DM, Senzel RS, Manifredi PL, Davis SM, Morrison RS. “Self-Reported Symptom Experience of Critically Ill Cancer Patients Receiving Intensive Care.” Critical Care Medicine, 29(2): 277–282, 2001. 48. Kish WS, Martin CG, Shaw AD, Price KJ. “Influence Of An Advance Directive on the Initiation of Life Support Technology in Critically Ill Cancer Patients.” Critical Care Medicine, 29(12): 2294–2298, 2001. 49. Ferrell BR. “Pain Evaluation and Management in the Nursing Home.” Annals of Internal Medicine, 123: 681–687, 1995. 50. Teno J, Bird C, Mor V. “The Prevalence and Treatment of Pain in U.S. Nursing Homes.” The Center for Gerontology and Health Care Research at Brown Uni- versity, available at www.chcr.brown.edu/dying/factsondying.htm; accessed 4/25/02. 51. Miller SC, Mor V, Wu N, Gozalo P, Lapone K. “Does Receipt of Hospice Care in Nursing Homes Improve the Management of Pain at the End-of-Life?” Journal of the American Geriatrics Society, 50: 507–515, 2002. 52. Portenoy RK. “Opioid Therapy for Chronic Nonmalignant Pain: A Review of Critical Issues.” Journal of Pain and Symptom Management, 11(4): 203–217, 1996. 53. Hill CS. “The Barriers to Adequate Pain Management with Opioid Analgesics.” Seminars in Oncology, 20(suppl. 1): 1–5, 1993. (94) 54. Christopher M and Spann J. “Advances in State Pain Policy and Medical Practice.” State Initiatives in End-of-Life Care: A Report on Pain Policy, 4, April 1999. 55. Hill, op. cit. 56. ABA Commission on Legal Problems of the Elderly. “Report to the House of Delegates: Proposed ABA Policy on Legal Obstacles to Effective Pain Man- agement, 2000,” available at http://www.abanet.org/ftp/pub/elderly/policyfinal.doc; accessed 7/2/02. 57. Salsberg E. “Study of the Supply, Demand and Use of Palliative Care Physicians in the U.S.” Center for Health Workforce Studies, SUNY, Albany School of Public Health, 2002. 58. Available at www.hpna.org/NBCHPN/why_recert.htm; accessed 4/25/02. 59. Metzger M and Kaplan KO. “Transforming Death in America: A State of the Nation Report.” Last Acts, Washington, 2001, available at www.lastacts.org. 60. www.epec.net/content/about.html; accessed 4/25/02 61. Salsberg, op. cit. 62. Metzger and Kaplan, op. cit. 63. Rabow MW and McPhee SJ. “Deficiencies in End-of-Life Care Content in Medical Textbooks.” Journal of the American Geriatrics Society, 50(2): 397, 2002. 64. Wood EB, Meekin SA, Fins JJ, Fleischman AR. “Enhancing Palliative Care Edu- cation in Medical School Curricula: Implementation of the Palliative Education Assessment Tool.” Academic Medicine,. 77(4): 285–291, 2002. 65. Magnani JW, Minor MA, Aldrich JM. “Care at the End of Life: A Novel Cur- riculum Module Implemented by Medical Students.” Academic Medicine, 77(4): 292–298, 2002. 66. Metzger and Kaplan, op. cit. 67. U.S. Census Bureau projections, available at www.census.gov/population/www/ projections/natsum-T3.html; accessed 7/17/02. 68. Ferrell BR and Coyle N. “An Overview of Palliative Nursing Care.” American Journal of Nursing,. 102(5): 25–31, 2002. 69. www.chcr.brown.edu/dying/siteofdeath.htm; accessed 4/15/02. 70. American Hospital Association, Hospital Statistics (Chicago: Health Forum, 2002). 71. Dartmouth Atlas of Health Care Working Group, Center for Evaluative Clinical Science, Dartmouth Medical School, Dartmouth Atlas of Health Care. Analysis for other geographic levels available at www.dartmouthatlas.org. 72. www.chcr.brown.edu/dying/severepain.htm; accessed 8/21/02. 73. Joranson DE, Gilson AM, Ryan KM, Maurer MA, Nischik JA, Nelson JM. Achieving Balance in Federal and State Pain Policy: A Guide to Evaluation (Madison, WI: Pain & Policy Studies Group, University of Wisconsin Comprehensive Cancer Center, 2000). Joranson DE, Maurer MA, Gilson AM, Ryan KM, Nischik JA. Annual Review of State Pain Policies, 2000 (Madison, WI: Pain & Policy Studies Group, University of Wisconsin Comprehensive Cancer Center, February 2001). Joranson DE, Maurer MA, Gilson AM, Ryan KM. Annual Review of State Pain Policies: A Question of Balance, 2001 (Madison, WI: Pain & Policy Studies Group, University of Wisconsin Comprehensive Cancer Center, February 2002). Available at www.medsch.wisc.edu/painpolicy/biblio.htm; accessed 7/5/02. 74. Available at www.abhpm.org/listings.htm; accessed 3/7/02. (95) 75. Available at www.hpna.org/hpna_map.htm; accessed 3/7/02. 76. American Medical Association. Physician Characteristics and Distribution in the US, 2002–2003 Edition (Chicago: American Medical Association Press, 2002). 77. HRSA, Division of Nursing. The National Survey of Registered Nurses, March 2000: Preliminary Findings February 2001. 4. Palliative care helps gain access to needed health care providers and appropriate care settings. It . . . • Uses many kinds of trained care providers, doctors, nurses, pharmacists, clergy, social workers and personal caregivers. • Makes sure, if necessary, that someone is in charge of seeing that your needs are met. • Helps you use hospitals, home care, hospice and other services, if needed. • Tailors options to the needs of you and your family. 5. Palliative care builds ways to provide excellent care at the end of life. It . . . • Helps care providers learn about the best ways to care for dying people. It gives them the education and support they need. • Works to make sure there are good policies and laws in place. • Seeks funding by private health insurers, health plans and government agencies. The Five Principles are a vision for better care at the end of life. They were developed for people who are dying, their families and their loved ones by the Last Acts Task Forces on Palliative Care and the Family. Last Acts is a coalition of more than 900 organizations representing health care providers and consumers nationwide. The organizations involved in Last Acts believe that everyone can make a difference in the care given to dying people and their families. We need to work together toward a health care system that offers all Americans, when they are dying: • The services that meet their individual needs. • Health plans that cover such care. • Health care providers who are well trained in palliative care. That would make the Five Principles of Palliative Care a reality. WHAT YOU CAN DO You and your family should expect to get good care at the end of life. You can improve the likelihood that you and your family will get the care you want if you: • Share this document. Discuss the care you want with your family, friends, physician and other health care pro- fessionals, and your spiritual adviser. Don’t wait until you are seriously ill! • Learn about your options for care. Make a list of questions to ask, to find out whether your doctor can pro- vide the care you want near the end of life. There is a list of sample questions on the Last Acts Web site, www.lastacts.org. • Check with your local hospitals, nursing homes and home health agencies about the special services (palliative care) they offer for dying patients and their families. Examples: Are there physicians, nurses, social workers and spiritual counselors trained in end-of-life care who can talk to you and your family about your concerns? Do they have experts who can manage pain and other physical discomforts? Do they offer bereavement services? • Find out about local hospice services. • Think about important decisions now. Prepare a living will and appoint someone to make decisions for you if you are not able (a health care proxy). • Look into community support groups and educational programs for seriously ill patients and their families (often offered by church groups, community centers, libraries and other organizations). For more information about Last Acts, visit our Web site at www.lastacts.org. Last Acts National Program Office 1620 Eye Street, N.W. Suite 202 Washington, D.C. 20006-4017 www.lastacts.org Phone: (800) 341-0050 Fax: (202) 296-8352

End-of-life care: questions and answers

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End-of-life care: questions and answers

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