The State of Palliative Care in Colorado

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1 The State of Palliative Care in Colorado Identifying Gaps and Opportunities March 2013 Prepared for the CIVHC Palliative Care Task Force

2 Acknowledgments CHI thanks these experts for participating in key informant interviews: Candace Bailey, Children s Waiver Specialist, Colorado Department of Health Care Policy and Financing Jennifer Ballentine, MA, Executive Director, Life Quality Institute Dan Johnson, MD, FAAHPM, Director of Palliative Care at Kaiser Permanente-Colorado, faculty at University of Colorado School of Medicine, Director at Life Quality Institute Cordt Kassner, PhD, Principal, Hospice Analytics Janet Lyons, RN, BSN, Executive Director of Clinical Services, Christian Living Communities Paula Mattison, RN, Director of Clinical and Quality Services, Colorado Health Care Association and Center for Assisted Living Paula Nelson Martin, RN, PhD, AOCN, Director, University of Colorado School of Nursing Palliative Care Program Katy Thiel, MSW, Social Worker for Home Health and Hospice, Northwest Colorado Visiting Nurse Association Mary Tuuk, MD, Chief Medical Officer, InnovAge Christy Whitney, RN, MS, President and CEO, Hospice & Palliative Care of Western Colorado Jeanie Youngwerth, MD, Assistant Director, Palliative Care Consult Service at University of Colorado Hospital, Assistant Professor at University of Colorado School of Medicine CHI staff members contributing to this report: Anna Vigran, lead author Amy Downs Deborah Goeken Michele Lueck About This Report The Center for Improving Value in Health Care (CIVHC) commissioned the Colorado Health Institute (CHI) to provide a gaps analysis related to palliative care in Colorado as part of CIVHC s strategic initiative to increase the availability of palliative care to all Coloradans. This overview identifies available information, gaps in information and models of palliative care being used in Colorado. CHI completed this work in mid-2012, using information from key informant interviews as well as existing survey data. Members of the CIVHC Palliative Care Task Force have contributed additional information to this paper. 2 The State of Palliative Care in Colorado:

3 Table of Contents 4 Introduction 5 Summary of findings 6 Understanding palliative care 7 Pictures of palliative care in Colorado 8 Do Coloradans want palliative care? 9 Advance directives 10 Is palliative care available in Colorado? 10 Palliative care in hospitals 11 Palliative care in outpatient settings 12 Paying for palliative care 13 Care providers knowledge and attitudes about palliative care 14 How much palliative care is being delivered in Colorado? 14 Medicare data and palliative care 15 Recommendations 17 Conclusion 17 Methods and limitation 18 Endnotes Identifying Gaps and Opportunities 3

4 Introduction Palliative care provides support for seriously ill patients and their families. Patients who benefit from palliative care are often still receiving curative treatments, and while many are in their last years of life, this is not always the case. Anyone of any age who is seriously ill can benefit from a diverse, supportive team of care professionals who work to understand and try to meet the goals and needs of the patient and the patient s family. The goal of palliative care is to improve quality of life for both the patient and the patient s family. A wide range of services is provided through palliative care programs, including coordinated medical care, pain and symptom management, care planning assistance, chaplain services, creative therapies, and social support. Although elements of palliative care are present in many health care settings, palliative care as a particular set of services delivered in specific ways by specially trained providers is rapidly becoming more formalized. Official definitions and certifications are being established as the national health care conversation turns to how coordinated team care can help to meet the Triple Aim goals of improving the patient experience, ensuring better health outcomes, and containing costs. Studies have shown that palliative care programs can help to meet these goals. 1,2 Palliative care was granted official subspecialty status by the American Board of Medical Specialties in Five years later, in 2011, The Joint Commission launched an Advanced Certification Program for Palliative Care. 3 While palliative care has been shown to address the Triple Aim goals, data on the availability, composition, and use of palliative care remain limited. As the practice of palliative care evolves, the ability to measure its availability and effectiveness must evolve as well. The term palliative care is unfamiliar to most people. 4,5 Even within the medical community there are different interpretations. 6,7,8 Most insurers, including Medicare, do not specifically cover the full range of palliative care services. This report explores and answers three questions to gain a better understanding of the state of palliative care in Colorado: Do Coloradans want palliative care? Is palliative care available in Colorado? How much palliative care is delivered in Colorado? 4 The State of Palliative Care in Colorado:

5 Summary of Findings While most adults are not familiar with the term palliative care, according to national surveys, they have a favorable opinion once it is explained to them. 9,10 The national survey results match the experience of Colorado providers and patients, according to key informant interviews. 11,12,13 The term palliative care is used differently by different care providers, resulting in inconsistent metrics. One 2008 survey found that about 25 percent of responding hospitals and 23 percent of hospices in Colorado reported providing palliative care. 14 That same year, a report card by the Center to Advance Palliative Care and the National Palliative Research Center found 67 percent of Colorado hospitals reported having a palliative care program. 15 By 2011, that report card said the number of Colorado hospitals reporting a palliative care program had climbed to 73 percent. 16 The differences in survey results between the Colorado specific survey and the national survey most likely relate to variations in methodology, definitions, and questions. Because of these limitations, the data should be viewed cautiously. Measuring the delivery of palliative care has many of the same challenges as measuring availability. Because most insurers do not pay for comprehensive palliative care, only a portion of the palliative care being delivered is tracked through billing. For example, many patients who receive palliative care are Medicare-eligible. But while Medicare pays for palliative care consultation visits provided by a physician or a nurse practitioner, it does not offer a specific benefit that covers most other facets of palliative care. And the CMS billing code for palliative care consultations is always a secondary diagnosis, not tied to reimbursement of any kind. 17 Consequently, available Medicare data almost certainly underestimate the level of palliative care provided in Colorado. 18 More data are available about hospice care, since hospice accreditation standards and a Medicare Hospice benefit were established in the 1980s. 19 It may be tempting to extrapolate data on hospice care in Colorado to estimate how much palliative care is provided. However, the differences between the two make it inadvisable to use hospice care data as a proxy for palliative care data, according to Cordt Kassner, principal at Hospice Analytics. 20 A number of steps could contribute to consistent measurement of palliative care and, ultimately, a better baseline understanding of where it stands in Colorado. Reliable data can help achieve the goal of having palliative care available for all Coloradans who could benefit from palliative services. Recommendations are included at the end of this report. Identifying Gaps and Opportunities 5

6 Understanding Palliative Care To understand palliative care, it is important to understand how it differs from hospice care. Essentially, all hospice is palliative care, but not all palliative care is hospice; another way to phrase it is that hospice is a specialty level of palliative care, defined and constrained by the Medicare Hospice Benefit. Palliative care is provided to patients who may still be using curative therapies; patients receiving palliative care may have a longer life expectancy than that of hospice patients; and most palliative care services are not specifically covered by Medicare. Also, patients receiving palliative care often continue to see the clinicians providing their usual or specialist care, with the palliative care team offering an extra layer of support. Medicare pays for palliative care consultation visits provided by a physician or a nurse practitioner, but there is not a Medicare palliative care benefit that covers its other facets, such as a social worker, nursing care, medications for symptom control or pain relief, and equipment services which are covered under the hospice benefit. 21 Defining palliative care How people use the term palliative care varies significantly. This is the definition from the Center to Advance Palliative Care, widely used across the country: Palliative care is specialized medical care for people with serious illnesses. This type of care is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness - whatever the diagnosis. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses, and other specialists who work with a patient s other doctors to provide an extra layer of support. Palliative care is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment The State of Palliative Care in Colorado:

7 Pictures Of Palliative Care in Colorado Case Studies Case Study One About 10 years ago, Kaiser Permanente launched randomized controlled trials of palliative care in three settings home, hospital and clinic. 23 All three studies showed that palliative care increased patient and family satisfaction, helped to improve a variety of quality measures, and decreased overall costs. These studies set the foundation for the growth of palliative care within the Kaiser Permanente system, growth that has been particularly strong in Colorado. This first case study was provided by Kaiser Permanente Colorado. A Kaiser Permanente Colorado patient is admitted to the hospital with progressive congestive heart failure. He has had two admissions in the past three months, and his family is struggling to manage his condition at home. He has had a couple of close calls, which worries them. They have resisted discussions about planning for the future but are now realizing they need help. They report they are not interested nor are they ready for hospice care. The hospital s palliative care team, which includes a physician, nurse, pharmacist, social worker, and chaplain, initially meets with the patient and his family for about an hour, then begins working to provide supportive resources both in the hospital and after the patient goes home. The patient and his family are offered spiritual support, assistance with completion of advance directives and other legal issues, and a pain management plan. The patient and his family are linked to palliative care services in the outpatient setting to continue support after his discharge from the hospital. Case Study Two Hospice & Palliative Care of Western Colorado has provided palliative care for 18 years through its Transitions program, which was created to care for patients who were not eligible for hospice under the Medicare definition. 24 It features a registered nurse care coordinator who visits the patient at least once a month and as often as once a week. It also offers the availability of 24-hour consultations from a nurse or physician, access to volunteer services, monthly consultations with a social worker, and a weekly phone call from a member of the palliative care team to assess the patient s status and care goals. Hospice & Palliative Care of Western Colorado has a 13-bed hospice facility, provides hospice and palliative care services in long-term care facilities in the area, and also works with the local hospital. This second case study comes from Hospice & Palliative Care of Western Colorado. A woman is admitted to the Transitions palliative care program in Grand Junction when her husband becomes a hospice patient there. She is not sick enough to need hospice care, so they admit her to a bed under palliative care - in the same room as her husband. When her husband dies, she is discharged to her daughter s home. The nurse from the Transitions program completes a home safety assessment and makes recommendations. The nurse visits weekly, a volunteer takes the patient to her grief group, another volunteer takes her to play bridge, and a social support volunteer comes every Monday. After falling and breaking her pelvis, the patient s health deteriorates and she is admitted to hospice. She still lives with her daughter, but now a certified nursing assistant comes to the home and helps her with bathing on a regular basis. A nurse and a volunteer still visit weekly, but she hasn t needed services from the chaplain or the social worker. Identifying Gaps and Opportunitites 7

8 Question One: Do Coloradans Want Palliative Care? The answer to this question is complicated by the fact that most people have not heard of palliative care. 25,26 Instead, the term hospice is more familiar to the general public, even though misconceptions remain about hospice, including the view of hospice as a place people go to die. Currently, there is no Colorado-specific data on consumer knowledge and attitudes toward palliative care. Key informants agreed, however, that it is reasonable to assume that knowledge and attitudes about palliative care are not significantly different in Colorado than in other parts of the country. Two national surveys conducted in 2011 found that less than a third of respondents had heard of palliative care. When a description was read to them, however, most respondents in both surveys had a favorable opinion of it. 27,28 The language used to define palliative care was important, with the research indicating that palliative care should be differentiated from end-of-life care or hospice in order for it to be understood. 29 For instance, while nearly half of the respondents agreed that both palliative care and end-of-life care may be appropriate for many patients, they worried that emphasizing palliative care and end-of-life care could interfere with doing whatever it takes to help patients extend their lives as long as possible. 30 Respondents reported their top three sources of information concerning palliative and end-of-life care were family members and friends, the news media, and doctors or other health care providers. Their most trusted sources of this information were doctors and other health care providers, family members and friends, and religious leaders. The national findings are consistent with statespecific surveys conducted over the past decade in California, Idaho, Massachusetts, Nebraska, North Carolina, and South Dakota. The most recent survey, conducted in California in 2011, was the only survey that asked specifically about palliative care. It found that 17 percent of respondents had heard of palliative care, compared with 73 percent who said they had heard of hospice care. 31,32,33,34,35,36,37 Given the challenges of defining palliative care, even within the health care community, it is not surprising that most adults have not heard of it. However, many palliative care providers interviewed did not seem concerned that patients are unfamiliar with the term. Christy Whitney, president and CEO, Hospice & Palliative Care of Western Colorado, said that often people do not know the term even when they are enrolled in a palliative care program. Dr. Dan Johnson, who oversees Kaiser Permanente s palliative care programs, offered the following perspective: Patients and families who are receiving palliative support may not call it palliative care. They might simply know it as Cindy, a palliative-trained social worker down the hall, the person who has been so helpful for me and my family The State of Palliative Care in Colorado:

9 Key informants said that patients and families often want to avoid using the terms hospice or end-of-life care, and that they may find the term palliative care less threatening. An illustration of the fluidity of the usage of the term comes from InnovAge, a Colorado provider for the Program of All-Inclusive Care for the Elderly (PACE), which provides comprehensive long-term services and supports to Medicare and Medicaid enrollees. About a year ago, InnovAge changed the name of one of their programs from end-of-life care to palliative care. InnovAge executives said that palliative care is more commonly used now and sounds less frightening than end-of-life care. 39 As illustrated above, it may be helpful if people don t have preconceptions of palliative care. Key informants said they have found that some patients don t like to be assigned to a group particularly if the label of that group sounds frightening. Instead the key informants said they discuss available services that meet the needs of the patient and family, who generally appreciate that extra support, even if they don t know it as palliative care. Advance Directives Advance directives support effective delivery of palliative care by allowing for informed decision making and documenting of preferences, as opposed to rushed decisions made in moments of crisis. Advance care planning is a key component of palliative care, as described in CIVHC s Palliative Care Best Practices: A Guide for Long-Term Care and Hospice. 40 A national household telephone survey conducted by Thomson Reuters in 2010 found that more than half of respondents (56.9%) had communicated their preferences regarding end-of-life care. 41 People over the age of 65 were more likely to have informally communicated their preferences and to have completed formal advance directives than those under the age of 35. Respondents who were in higher income brackets were more likely to have done so than those with lower income. Most people who had communicated their wishes had done so informally, such as talking with friends and family (87.3%). About 60 percent had a living will or medical directive, and 50 percent had a health care power of attorney The 2012 Colorado Behavioral Risk Factor Surveillance System (BRFSS) questionnaire for the first time asked respondents if they had completed an advance health care directive, living will, or medical durable power of attorney. Data provided by this survey will show the prevalence of completed advance directives in Colorado as well as geographic and demographic disparities within the state. This information, which will be available in spring 2013, can help direct work to identify barriers to completing advance directives in Colorado. The Life Quality Institute (LQI) is evaluating the implementation of Medical Orders for Scope of Treatment (MOST) forms, a new tool for documenting treatment preferences. LQI surveyed providers in summer 2012, and the results could be used in combination with BRFSS data to get a better understanding of how advance directives are being used in Colorado. Identifying Gaps and Opportunities 9

10 Question Two: Is palliative care available in Colorado? Yes, although the data surrounding this question most of it obtained from surveys of health care providers vary widely. The differences in survey results most likely relate to variations in methodology, definitions, and questions. Still, a review of the data on palliative care in Colorado, as well as key informant interviews with people responsible for palliative care work in a variety of settings across the state, gives some indication of the level of palliative care being provided here. Palliative care in hospitals Palliative care programs are most often available in hospitals, primarily because the fee-for-service payment model supports paying for physician and nurse practitioner consultations as well as the fact that hospitals have many patients who can benefit from palliative care, the key informants said. The down side to this focus on hospital-based palliative care is that patients tend to be quite ill and have already required intensive use of health care resources. Two studies measuring the prevalence of hospitalbased palliative care in Colorado were conducted in Taken together, they suggest that while the percentage of hospitals that provide palliative care is higher in Colorado than the national average, it may not be as high as some surveys suggest. The Colorado Center for Hospice and Palliative Care (CCHPC) interviewed all hospices and hospitals in the state to determine if they were providing palliative care. The survey used this definition of palliative care: Palliative care is the active, interdisciplinary comfort care of individuals whose conditions may not be responsive to curative treatment. It seeks to achieve the best quality of life as determined by each patient and family. Palliative care focuses on aggressive control of pain and other physical symptoms, and on the emotional, social, and spiritual priorities of the patient and the patient s family. At the time of the 2008 survey, there were 84 state licensed hospitals in Colorado and 48 hospices. 42 This survey found that 21 of the contacted hospitals (25 percent) reported that they had a palliative care program, and five of those hospitals reported that they contracted with a local hospice to provide palliative care services. The number of palliative care consultations provided at each hospital varied widely, from eight to 10 per year to 720 per year. This variation seemed to be related to the size of the population served by the hospital and the length of time the palliative care program had existed. In addition, the delivery of palliative care varied considerably, from a model with one registered nurse to models that featured a full team of caregivers, including a chaplain and pharmacist, according to Dr. Johnson. A 2008 national survey by the American Hospital Association found that a much higher percentage, 67 percent, of Colorado hospitals reported having a palliative care program. 43 This finding is reported in America s Care of Serious Illness: A State by State Report Card published by the Center to Advance Palliative Care and the National Palliative Research Center, and showed the percentage of Colorado hospitals with palliative care programs to be higher than the national rate of 53 percent. For this survey, the definition of palliative care was: An organized program providing specialized medical care, drugs or therapies for the management of acute or chronic pain and/or the control of symptoms administered by specially trained physicians and other clinicians; and supportive care services, such as counseling on advanced directives, spiritual care, and social 10 The State of Palliative Care in Colorado:

11 services, to patients with advanced disease and their families. Primary data from the American Hospital Association was supplemented with information from the National Palliative Care Registry, the only repository for national data on the structure and processes of hospital palliative care programs. It was launched in Hospitals were found to have a palliative care program if they reported offering services in any of these manners: 44 By the hospital; By the health system; By the health care network; Through a contractual agreement or joint venture with another provider, such as a hospice providing non-hospice palliative care to hospital patients. Current evidence suggests that the amount of palliative care provided in Colorado has increased since The 2011 Report Card from the Center to Advance Palliative Care and the National Palliative Research Center said that the percentage of Colorado hospitals reporting a palliative care program had climbed to 73 percent from the 67 percent reported in Meanwhile, Kaiser Permanente currently provides about 1,700 inpatient palliative care consultations a year between just two hospitals Exempla St. Joseph s in Denver and Exempla Good Samaritan Medical Center in Lafayette. Another example of the growing recognition of palliative care in the state comes from the University of Colorado Hospital (UCH), which is working on an application to win approval as an Advanced Certification Program for Palliative Care. The Joint Commission launched the certification program in 2011 to recognize hospital inpatient programs that demonstrate exceptional patient and family-centered care in order to optimize the quality of life for patients with serious illnesses. 46 As of February 2012, only five hospitals across the country had received this advanced certification. 47 Dr. Jeanie Youngwerth, who is leading the certification application process, stated that the UCH application should be finished in She said that going through this certification process will help the hospital improve its palliative care program as well as increase the program s visibility and prestige. 48 Palliative care in outpatient settings Palliative care is also provided to people living in their own homes, in assisted living settings, and in nursing homes. Community hospice organizations and long-term care providers primarily deliver this care, although other providers, such as Kaiser Permanente Colorado, are involved as well. The 2008 CCHPC survey found that 11 of the 48 hospices (23%) reported that they had palliative care programs that were separate from their Medicare-qualified hospice services. Six of those 11 said they provided palliative care consultations, although they did not specify where they provided these consultations. The remaining five said they provided support, people services, whatever they need, or counseling. This illustrates again how providers use different terminology. Hospices do not always consider what they offer a consultation, as hospitals traditionally do, although the services provided may be quite similar. This variation in terminology makes it difficult to compare data collected from hospice organizations to data collected from hospitals. The hospices reported a wide range of annual consultations, from 14 to 412. Christy Whitney of Hospice & Palliative Care of Western Colorado said there are several predominant ways that Colorado hospice organizations offer palliative care: Some have a physician who will do consultation visits upon request for patients who are not enrolled in hospice, either in a hospital or other settings. Several other organizations offer palliative Identifying Gaps and Opportunities 11

12 care services, usually by nurse practitioners and/or physicians. These services tend to be more acute and offered to patients undergoing active, aggressive therapies requiring a greater intensity of service and expertise. Many of these patients tend to transfer late to hospice or not at all. Other models include less intensive home and outpatient (e.g., assisted living facility or nursing home support) through nurse or social work models. These services often described as bridging programs are provided by community hospices with a goal to support patients as they transition from more curative to comfort approaches to care. These programs are limited by poor reimbursement options. Outpatient nurse/social work care coordination palliative care services focus on assuring that patients who are going in and out of hospice eligibility, or who aren t quite ready for hospice, have coordinated care and can access appropriate palliative interventions. Most of these patients do eventually transfer to a hospice program prior to death. Paying for palliative care Most insurers, including Medicare, cover palliative care consultations done by a physician or a nurse practitioner. These consultations are paid for as a specialty consultation, however, not specifically as palliative care. However, these payments do not tend to cover the entire cost of a palliative consultation. In fact, they pay only about 50 percent of the cost. Palliative care consultations/ encounters are typically two to three times the length of a typical physician or specialist encounter. In general, outpatient palliative care by a provider other than a physician or nurse practitioner is not reimbursed by insurers. There are exceptions, including the following: Kaiser Permanente Colorado pays for inpatient and outpatient palliative care through four programs: Inpatient palliative care consultations in partnership with Exempla Healthcare at St. Joseph s in Denver and Good Samaritan Medical Center in Lafayette; Home-based palliative care in partnership with The Denver Hospice and HospiceCare of Boulder and Broomfield Counties; An ambulatory palliative care clinic at the Rock Creek Clinic in Lafayette, and social workers providing palliative care services at other clinics; The Kaiser Special Services, which provides up to 15 lifetime visits with palliative-trained social workers or nurses. This program primarily serves patients in nursing homes or assisted living facilities who are not eligible for other Kaiser palliative care programs, but who are not yet ready to enroll in hospice. Kaiser Permanente Colorado has found that about a third of patients who receive an inpatient palliative care consultation are not transitioned to any program, a third are transitioned to hospice, either at home or in a facility with hospice services, and the rest are transitioned to Kaiser Permanente s clinic-based or home-based palliative care services. Rocky Mountain Health Plan has a contract with Hospice & Palliative Care of Western Colorado and it pays a rate for an encounter day for the Transitions palliative care program under its regular health plan. Colorado s pediatric Medicaid palliative care waiver, implemented in 2008, pays for homebased and community-based palliative care for children with life-limiting illnesses that require an institutional level of care. This waiver allows the children to live at home, where they may receive palliative and supportive care, as well as expressive therapy such as painting and music, counseling and respite care. 49 All 200 slots were filled as of mid-august 2012, but there wasn t a waiting list. Still, some patients could not get all the services they wanted. For example, expressive therapy providers were not always available The State of Palliative Care in Colorado:

13 Colorado is one of three states with a pediatric Medicaid palliative care waiver, although there is growing interest from other states. 51 The possible development of a Medicaid palliative care benefit for adults is being discussed in Colorado. In 2012, Colorado Medicaid did expand eligibility for hospice services to include patients with a terminal illness who have a life expectancy of nine months or less, instead of only those who have a life expectancy of six months or less. Care providers knowledge and attitudes about palliative care In many ways, Colorado has been at the leading edge of palliative care training, with much of the work led by Life Quality Institute (LQI). 52 Palliative care training in Colorado includes: University of Colorado Medical School: LQI introduced palliative care content at the medical school in 2003, when very few medical schools taught palliative care. By 2007, over 40 hours of required palliative curriculum was established at the University of Colorado. Today many medical schools have added palliative care curriculum, and the University of Colorado has fully incorporated it into its program, including a requirement for hospice and palliative care training and a clinical rotation. Residency programs: Required hospice and palliative care education has been incorporated into five residency programs in the Denver Metro area.. Fellowships: A University of Colorado palliative care fellowship was accredited in July 2010, and recently expanded to two positions each year. Physician assistant training: Also led by LQI, this effort, first established in 2007, includes classroom training and clinical rotations in a variety of palliative care settings for University of Colorado physician assistant students. University of Colorado College of Nursing Palliative Care Certificate Program: Started in 2003, it prepares nurses for advanced practice certification from the Hospice and Palliative Nurse Association. About 100 have completed the certificate program, with approximately half practicing in Colorado. Recently, LQI has focused on practicing professionals, offering two conferences each year, in-service and grand rounds presentations, and an interdisciplinary palliative care certificate program launched in August 2012, primarily directed toward providers upstream from hospice and palliative care, such as nursing facilities, assisted living, or even primary care. This program is the only interdisciplinary palliative care course currently offered in the country. Colorado had 57 physicians, nine advanced practice nurses, and 173 registered nurses certified in hospice and palliative medicine in 2008, according to the 2011 Report Card on access to palliative care in hospitals. 53 While the number of hospice and palliative care certification programs is increasing, they remain quite new, and it is not clear how quickly they will grow or how much these certifications will be in demand by employers. Meanwhile, HealthTeamWorks - a Colorado organization focusing on quality improvement in health care using a systems approach - has distributed a document titled Palliative Care Guideline to primary care providers throughout Colorado to help them deliver primary palliative services. The document provides a definition of palliative care, and helps the provider distinguish it from hospice care. In addition, it offers step-bystep guidance on how to begin the discussion with patients and their families about using palliative care. 54 In another forward-looking development, in , the Colorado Health Care Association (CHCA) and the Colorado Center for Hospice & Palliative Care (COCHPC) wrote a comprehensive palliative care best practices guide. The guide was updated in 2011 by members of CIVHC s Palliative Care Task Force. It is available on CIVHC s website. 55 Identifying Gaps and Opportunities 13

14 Question Three: How much palliative care is delivered in Colorado? Data for different kinds of care is most reliably gathered through payment records. For example, robust data is available on hospice care because it is a Medicare benefit. Thus, Medicare claims data paint a complete picture of hospice care across the country. Palliative care claims data offer little information to help identify where palliative care services are provided. This means it is difficult to quantify the level of palliative care being delivered in Colorado - or anywhere, for that matter. There is, however, detailed data collected in particular systems, such as Kaiser Permanente and InnovAge. Palliative care is a diverse, complex, and often long-term coordinated care approach, and as such there are few financial incentives for this kind of care under a fee-for-service payment system. Medicare data and palliative care The Centers for Medicare and Medicaid Services (CMS) has a billing code for palliative care, which became effective in The CMS billing code, V66.7, is a secondary diagnosis that indicates encounter for palliative care. Its subheadings include end-of-life care, hospice care, and terminal care. 56 The palliative care code is always coded second, with the underlying disease coded first. The palliative care code is not tied to any reimbursement. Physicians usually bill this service under consulting time. Medicare s V66.7 billing code is the only code to track palliative care consultations, outcomes, and costs. The palliative care community has been encouraging its use for years, but there are limitations to these data because of inconsistent use and a complex billing process. Unless reimbursement becomes associated with the code, it won t be consistent or accurate, according to Cordt Kassner. With little additional money available in federal and state budgets, such discussions haven t gone far, he added. In the current climate of budgetary constraints, new programs - even those shown to have the potential for saving money - often have difficulty winning funding. At the same time, many Colorado providers don t submit palliative care billing codes to Medicare even if they are providing services to Medicare patients. Kaiser Permanente, a Medicare Advantage provider, receives a capitated per member per month payment. Because of that, it doesn t submit fee-for-service billing to Medicare. Kaiser Permanente has a detailed internal coding system to keep track of palliative care, but those data are not provided to Medicare and don t show up in Medicare data. InnovAge is a provider for the Program of All-Inclusive Care for the Elderly (PACE), which provides comprehensive long-term services and supports to Medicare and Medicaid enrollees. PACE providers also receive capitated payments so they do not submit fee-for-service billing information to Medicare. Even given these limitations, the V66.7 code for encounter for palliative care is currently the best measure available of palliative care in Colorado. Medicare data shows that in 2010, 1,610 Medicare beneficiaries in Colorado received at least one palliative care consultation. These data are available from Hospice Analytics. Clearly this is an underestimate. Kaiser Permanente Colorado reported more hospital palliative care consultations last year at just the two hospitals where they provide this service. 14 The State of Palliative Care in Colorado:

15 Recommendations The need for palliative care is compelling. Nearly a third of Medicare s annual budget goes to care for patients during their last year of life. 57 Yet despite this cost, there are significant gaps in the quality of care delivered to these patients, and gaps in the provision and continuity of care that add costs and detract from the quality of care for vulnerable patients. The need for palliative care is compelling. Nearly a third of Medicare s annual budget goes to care for patients during their last year of life. Yet despite this cost, there are significant gaps in the quality of care delivered to these patients, and gaps in the provision and continuity of care that add costs and detract from the quality of care for vulnerable patients. The concept at the heart of palliative care is providing support to help improve the quality of life of very sick people and their families. While this idea is timeless, the formalized discipline of palliative care is relatively new. Over the past 10 years, palliative care has received increased recognition and there is a growing urgency to integrate palliative care into the health care system. Still, as this report shows, there are significant obstacles to extending the use of palliative care. Problems include confusion about its definition, a lack of understanding on behalf of providers and consumers, no widely-accepted metrics, and a fee-for-service payment system that does not offer financial incentives for this model of care. Based upon investigation into gaps surrounding the knowledge and use of palliative care in Colorado, CHI makes the following recommendations for those working to increase access to high-quality palliative care. Design and conduct a bi-annual survey to measure palliative care provided in Colorado and determine trends in availability. Collecting the data necessary to get an overview of what palliative care services are available and provided in Colorado would require several steps: Adopt a working definition of palliative care. Any discussion of increasing the availability of palliative care must begin with the acknowledgment that definitions vary, even among those providing the care. Achieving a shared vocabulary will allow for more specific survey questions that will yield more accurate and helpful data. Identify consistent and quantifiable palliative care reporting metrics for Colorado. National definitions and guidelines, such as questions included in the National Palliative Care Registry, can be used to identify key metrics that would be most helpful in tracking palliative care in Colorado. 58 Identifying Gaps and Opportunities 15

16 Analyze 2012 BRFSS data on use of advance directives by geography, race/ethnicity, age, income, and educational attainment to identify which groups are least likely to have completed an advance directive. This information can be used to identify Colorado communities or demographic groupings that would particularly benefit from a pilot program to increase the completion of advance directives. Focusing on one community or grouping to change the conversation about end-of-life care has been shown to be effective in La Crosse, Wisconsin, as well as in Grand Junction, Colorado. The pilot program should be developed in collaboration with Life Quality Institute, which is working to increase implementation of the Colorado Medical Orders for Scope of Treatment form (MOST). Work to include palliative care in care collaboration and payment reform pilot programs. Including palliative care services in pilot programs that address either of these areas would provide an opportunity to demonstrate the benefits of this model and increase access to palliative care. It would also be helpful to identify strategies to encourage development of a palliative care consultation billing code for physicians and nurse practitioners that would establish an appropriate fee for reimbursing these visits in a hospital setting. This could begin with a focus on people who have Medicaid as a primary payer. Continue to improve communication and increase awareness of the palliative care approach, particularly among providers and administrators who are charged with integration of care, improvement of outcomes, and reduction of costs. Introducing people who are charged with advancing the Triple Aim goals in their own practices to models of palliative care that have been shown to be effective could help integrate palliative care into existing models of care. This could lead to improved collaboration between palliative care providers and other care providers, such as hospitals, clinics, and nursing facilities, making palliative care more widely available. These efforts could include case studies illustrating how palliative care benefits a variety of patients and families who are receiving care in a variety of settings. These could be presented in a variety of easily accessible formats, such as photo essays, short videos, or one-page descriptions. 16 New Approaches to Paying for Health Care:

17 Conclusion In the rapidly changing world of health care it is challenging to introduce one more idea into the conversation. Integrating palliative care into existing systems meets people where they are and gives patients, providers, and administrators a first-hand understanding of the benefits of this model of care. Taken together, these recommendations would increase knowledge and improve attitudes about palliative care, increase the ability to measure palliative care in Colorado, and demonstrate how the palliative care model can help advance the Triple Aim goals across the health care system. Methods and Limitations This report presents an overview of the current palliative care landscape in Colorado using key informant interviews and existing survey results. Colorado-specific palliative care data collected in the past five years were reviewed, as well as national surveys and surveys conducted in other states that address questions for which no Colorado specific data are available. The key informant interviews conducted for this review were particularly valuable given the limited amount of palliative care data available from other sources. While the interviews provided valuable guidance and insight into the diversity and complexity of palliative care provided in Colorado, they do not comprise a comprehensive survey of subject matter experts, care providers, or insurers. Implications for Quality Improvement and Cost Containment in Colorado 17

18 Endnotes 1 Conversations with Dan Johnson, MD, FAAHPM, Kaiser Permanente, University of Colorado School of Medicine, Life Quality Institute, August 17, Morrison R.S., et al. (2011). Palliative Care Consultation Teams Cut Hospital Costs for Medicaid Beneficiaries. Health Affairs No 3: The Joint Commission. (2012). Advanced Certification for Palliative Care. (Retrieved July 11, 2012, from: jointcommission.org/assets/1/18/palliative_care_brochure_final_ pdf). 4 Center to Advance Palliative Care. (2011) Public Opinion Research on Palliative Care. (Retrieved July 11, 2012, from: 5 National Journal and The Regence Foundation. (2011). Living Well at the End of Life: A National Conversation (Retrieved July 12, 2012, from: 6 Conversations with Dan Johnson, August 17, Conversation with Janet Lyons, RN, BSN, Executive Director of Clinical Services, Christian Living Communities, August 8, Conversation with Christy Whitney, RN, MS, President and CEO, Hospice & Palliative Care of Western Colorado, August 15, Center to Advance Palliative Care Public Opinion Research on Palliative Care. 10 National Journal and The Regence Foundation. Living Well at the End of Life: A National Conversation 11 Conversation with Dan Johnson, August 17, Conversation with Janet Lyons, August 8, Conversation with Christy Whitney, August 15, Colorado Center for Hospice and Palliative Care Web Site Update Project Interviews with Hospice and Hospitals. Terra Anderson. May Provided by Cordt Kassner. 15 Center to Advance Palliative Care and National Palliative Care Research Center. (2008). America s Care of Serious Illness: A State-by-State Report Card on Access to Palliative Care in Our Nation s Hospitals. Report provided by Rachel Augustin, Research Projects Director, Center to Advance Palliative Care, August 3, Center to Advance Palliative Care and National Palliative Care Research Center. (2011). America s Care of Serious Illness: A State-by-State Report Card on Access to Palliative Care in our Nation s Hospitals (Retrieved December 19, 2012, from: 17 Cost Savings Associated with Palliative Care PowerPoint slides. (May 8, 2012) Provided by Cordt Kassner. 18 Conversation with Cordt Kassner, PhD, principal at Hospice Analytics, July 30, National Hospice and Palliative Care Organization. (2012). History of Hospice Care. (Retrieved July 11, 2012, from: 18 The State of Palliative Care in Colorado:

19 20 Conversation with Cordt Kassner, July 30, Center for Medicare & Medicaid Services. (2012). Medicare Hospice Benefits. (Retrieved December 20, 2012, from: 22 Center to Advance Palliative Care. (2012). Definition of Palliative Care. (Retrieved August 10, 2012, from: capc.org/tools-for-palliative-care-programs/marketing/media-and-messaging/definition-of-palliative-care). 23 Conversations with Dan Johnson, August 17, Conversation with Christy Whitney, August 15, Center to Advance Palliative Care Public Opinion Research on Palliative Care. 26 National Journal and The Regence Foundation. Living Well at the End of Life: A National Conversation 27 Center to Advance Palliative Care Public Opinion Research on Palliative Care. 28 National Journal and The Regence Foundation. Living Well at the End of Life: A National Conversation 29 Center to Advance Palliative Care Public Opinion Research on Palliative Care. 30 National Journal and The Regence Foundation. Living Well at the End of Life: A National Conversation. 31 California HealthCare Foundation. (2012). Snapshot Final Chapter: Californians Attitudes and Experiences with Death and Dying. (Retrieved July 13, 2012, from: FinalChapterDeathDying.pdf) 32 Center for the Study of Aging, Boise State University. (2006). Idaho Statewide End-of-Life Survey Report. (Retrieved July 13, 2012, from: 33 Massachusetts Commission on End of Life Care. (2005). End-of-Life Care Survey. (Retrieved July 13, 2012, from: AARP. (2005). AARP Massachusetts End of Life Survey. (Retrieved July 13, 2012, from: docs/expert-panel/aarp-end-of-life-report-final.pdf) 35 Nebraska Hospice and Palliative Care Partnership. (2007). Nebraska End of Life Survey Report. (Retrieved July 13, 2012, from: 36 AARP. (2003). AARP North Carolina End of Life Care Survey. (Retrieved July 13, 2012, from: 37 Life Circle South Dakota. (2007). South Dakota s Dying to Know: End-of-Life Research, (Retrieved July 13, 2012, from: 38 Conversation with Dan Johnson, August 17, Conversation with Mary Tuuk, MD, chief medical officer, InnovAge, August 14, CIVHC. (2012). Palliative Care Best Practices: A Guide for Long-Term Care and Hospice. (Retrieved August 22, 2012, from: Identifying Gaps and Opportunities 19

20 41 Thomson Reuters. (2010). National Survey of Healthcare Consumers: End-of-Life Care. (Retrieved July 13, 2012, from: 42 Colorado Center for Hospice and Palliative Care Web Site Update Project Interviews with Hospice and Hospitals, May Center to Advance Palliative Care and National Palliative Care Research Center. (2008). America s Care of Serious Illness: A State-by-State Report Card on Access to Palliative Care in Our Nation s Hospitals. 44 Center to Advance Palliative Care and National Palliative Care Research Center. (2011). A State-by-State Report Card on Access to Palliative Care in our Nation s Hospitals: Methodology. (Retrieved December 19, 2012, from: 45 Center to Advance Palliative Care and National Palliative Care Research Center. (2011). America s Care of Serious Illness: A State-by-State Report Card on Access to Palliative Care in Our Nation s Hospitals. 46 The Joint Commission. (2012). Advanced Certification for Palliative Care. (Retrieved July 11, 2012, from: The Joint Commission. (2012). The Joint Commission Awards First Advanced Certifications for Palliative Care. (Retrieved August 10, 2012, from: certifications_for_palliative_care/) 48 Conversation with Jeanie Youngwerth, MD, Assistant Director, Palliative Care Consult Service at University of Colorado Hospital, Assistant Professor at University of Colorado School of Medicine, August 9, Colorado Department of Health Care Policy and Financing. (2012). Waivers. (Retrieved August 21, 2012, from: 50 Conversation with Candace Bailey, waiver administrator at the Department of Health Care Policy and Finance for the Children with Life Limiting Illness (CLLI) waiver, August 14, Conversation with Candace Bailey, August 14, Conversation with Jennifer Ballentine, MA, Executive Director, Life Quality Institute, August 9, Center to Advance Palliative Care and National Palliative Care Research Center. (2011). America s Care of Serious Illness: A State-by-State Report Card on Access to Palliative Care in Our Nation s Hospitals. 54 HealthTeamWorks. (2011). Palliative Care. Guidelines and Supplemental Materials. (Retrieved December 18, 2012, from: 55 Center for Improving Value in Health Care. (2011). Palliative Care Best Practices: A Guide for Long-Term Care and Hospice. (Retrieved December 18, 2012, from: 56 Cost Savings Associated with Palliative Care PowerPoint slides. (May 8, 2012) Provided by Cordt Kassner. 57 CIVHC slides. (2012). Palliative Care: Providing the Best Care Possible. 58 Center to Advance Palliative Care. (2011). National Palliative Care Registry DY 2011 (Retrieved December 18, 2012, from: 20 The State of Palliative Care in Colorado:

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