Letter to Brian Wing

September 7, 2006 Mr. Brian J. Wing Deputy Commissioner New York State Department of Health Office of Medicaid Management One Commerce Plaza, Suite 826 Albany, NY 12210 Re: LTC Restructuring RFI Dear Mr. Wing: Thank you for your letter of July 5, 2006 on the proposal for a statewide Medicaid waiver for eligible persons to access long term care services outside the nursing home setting. We forward this letter as our comments in response to the Requests for Information (RFI) enclosed therein. The Hospice and Palliative Care Association of New York State (HPCANYS) supports this initiative in its intent to build on the recommendations that were issued in 2004 by the Health Care Reform Working Group. We offer these comments in the hope that they can help shape a system that better responds to patient needs while helping to contain costs to the system in general. HPCANYS represents 57 hospice and palliative care programs operating throughout the state, and we and our member programs stand ready and willing to provide expertise and services to help in attaining these goals. We offer below a number of broad recommendations and comments that reflect our thoughts about the RFI and the general systemic change that it anticipates. These comments will also inform our more specific recommendations that respond to the seven topics set out in section IV of the RFI. Comments and Recommendations Overview 1. As stated in the RFI cover letter, it is important that the waiver “contains the components necessary to effectively rebalance and restructure New York State’s long term care system.” But it is at least as critical that the waiver be designed in such a way that it is not merely a set of 1 “components.” Rather, the waiver should be explicit and intentional in creating a process for smooth, intelligent and appropriate patient transitions between the available components. Most existing long-term care options already provide adequate services to the stable patient. When conditions change resulting in a change of care needs, the current arrangements for transitions between programs or settings are often disjointed, awkward, time-consuming and frustrating to patients and families. Yet in most cases, these transitions are highly predictable, and care providers are capable of much more effective planning. The waiver should be based on the idea that transitions are the most problematic part of the current long-term care system. The care during stable episodes may need some minor change, but the system for navigating the path between those episodes remains unnecessarily difficult. Transition planning offers the greatest potential for systemic improvement. The new arrangements should be grounded in a process design, not a program design. 2. Similarly, the current system generally views the patient’s needs in single segments, geared toward solving a single problem when it presents itself and based on the choices then available for that problem. The result is a set of patients moving from one episode of care to the next, often without explicit orientation to the longer arc of the care process, the predictable challenges ahead, or the range of choices that, over the longer term, may be available to provide for the patient a more satisfactory care plan with lower costs to the system. The waiver system should therefore be grounded in the necessity for planning long term care for the entire disease process and over a multiyear period, anticipating the foreseeable changes in medical conditions that will inevitably necessitate changes in care. We can’t expect to solve the problems of long-term care with an unplanned series of short-term decisions. 3. Likewise, the waiver system should acknowledge the fact that for the majority of long term care patients, and for virtually all of the frail elderly population, long term care implicitly includes end-of-life care. The waiver system should therefore be explicit about the very real and practical need to include end-of-life education, planning and advance directive documentation as part of the process. Some frank discussion about the patient’s preferences for care at the end of life, undertaken early in the process (while capable of further refinement as care progresses), can provide for much higher levels of confidence and satisfaction for patients and families. If these decisions can be made early and documented in an atmosphere of calm reflection, patients and families are far more likely to see the care provided as aligning with their own wishes while at the same time providing cost savings by avoiding the current default process for medical crisis – the ambulance and the emergency room. 2 A. Community Resources Although it is understood that all necessary supports may not be available or even appropriate under the 1115 waiver, we can identify those community resources that specifically impact hospice and palliative care and which may affect a consumers’ ability to avoid hospitalization and long term care placement. Critical to effective care coordination across provider sites will be the ability of the point of entry (POE) to identify, employ and leverage provider and volunteer resources effectively. Continuous risk and needs assessments are necessary at all stages across the care continuum, including prehospitalization, admission, prior to discharge, within 72 hours of discharge (and at varying stages dependent upon the acuity level of the consumer). Imperative for the success of the POE is the education of seniors and caregivers to make the navigation of the system manageable. At a minimum, health care providers must be well educated in effective discharge planning and transitional care. Professional associations like ours can assist in this important process by making the education of POE staff (and their own members) a priority. Each participant in the system must understand its place in the long-range arc of the patient’s care and align its advice and direction to the optimal choices available in light of consumer preferences and accessible community resources. The goal must be to make decisions based on the widest scope of considerations so that choices are not needlessly constrained by a narrow or parochial view of the patient’s needs and desires. As mentioned in the April 2006 report, From Hospital to Home: Improving Transitional Care for Older Adults, April 2006 (http://169.229.143.217/PDF/h2hsummaryrpt.pdf), “hospice services, which are commonly provided in the home and support both the patient and the caregiver, serve as a model for care that could improve outcomes for many older adults living with chronic, unstable, but long-lasting medical conditions, such as heart disease, chronic lung disease, cancer and HIV. A wider application of the hospice model might allow older adults who currently end up in long term care facilities to remain in the community.” The first recommendation in this report supports the need for greater public awareness surrounding transitional care issues for seniors. The restructuring of long-term care in New York can meaningfully improve the quality of care for all, especially for those with life-limiting illness. As the report goes on to state, discharge planners’ lack of training about the wide array of services for consumers and their caregivers has adversely impacted the utilization of healthcare services across the continuum. As the population over age 65 continues to grow, education about hospice and palliative care is essential, but education about decision-making within the hospice model can be 3 of equal importance to making our healthcare more responsive to community needs. 1. In the wake of the hospital closure advisory recommendations it is timely for every hospital closure to include a detailed retraining and redeployment plan for healthcare workers. Every effort must be made to guarantee the continued availability of that rare commodity, trained and experienced healthcare professionals and allied staff. To ensure the necessary educational and retraining programs for healthcare staff, the Department of Health must provide continuing support focused on the ever-growing needs of the aging in our communities. To do so:  Care models should be redesigned to address nurse and nursing assistant shortages.  Physicians, nurses, social workers and other ancillary healthcare providers either must undergo training or must be educated to understand the care needs of older consumers. (See Recommendation 6.1 from the aforementioned report, From Hospital to Home: Improving Transition Care for Older Adults.)  Healthcare professionals must be well informed of the differences in care options, especially those that differentiate hospice and certified home health care.  Retraining must be available for specialized healthcare workers for the new jobs that will be needed in the progressive field of hospice and palliative care.  All physicians must be knowledgeable about patient eligibility criteria for hospice care and cognizant of how the system relies on their best clinical judgment in making eligibility determinations.  Budget resources must be allocated to support: 1. Retraining for hospice and palliative care, encouraging the training of all allied health workers in the benefits of palliative techniques and interdisciplinary team care. 2. Ongoing POE and provider staff training and access to impartial information on long-term care for the entire community. 3. Demonstration projects that will enhance the discharge and longterm care planning process 2. Financial incentives should be developed for providers who demonstrate better quality of care management. Home-based palliative care has been shown to be remarkably cost-effective, particularly by reducing emergency room admissions, rehospitalizations and the exacerbation of disease, particularly among those patients with end stage illnesses such as cancer, heart failure, COPD or renal failure. At the same time, palliative care also leads to higher patient and family satisfaction. 4 Incentives to train professionals in this field would be an investment with an immediate and measurable payoff. 3. An interdisciplinary support mechanism that mirrors the hospice philosophy would more effectively address the physical, psychosocial and spiritual needs of the consumer and will promote a consumer-centric educated choice. Given the fact that in the next decade one in four New Yorkers will be over the age of 60, reliable and impartial information on hospice and palliative care is imperative for the success of the POE. Essential support services must:  Coordinate early discussion with consumers recently diagnosed with life-limiting illness;  Be consumer-centered and support self determination based upon the availability of care options in the community;  Provide a complete list of all services that are available in the area, including long term care services, hospice, palliative care and home care providers as well as adult day programs;  Provide comprehensive and unbiased information and assistance in all services and support including hospice and palliative care;  Provide comprehensive, ongoing and on-demand needs assessment including psychosocial, medical, spiritual and financial needs;  Enhance caregiver support in order to prevent caregiver burnout, enabling consumers with life-limiting illness to remain at home. 4. Only twenty percent of the general population in New York has written advance directives. When no family member is legally authorized to speak for the consumer, the most common default choice is invasive and painful treatment instead of more comfortable palliative measures. Allowing consumers ample time to discuss treatment options after initial diagnosis and facilitating a farsighted decision-making process is most likely to eliminate wasteful healthcare spending on futile treatment regimens. Educating consumers about the hospice and palliative care options early on helps to remove one of the significant psychological barriers impeding the greater utilization of hospice and palliative care. There is a big difference between the brink of death and the end of life. Informed and deliberate end of life care planning has to acknowledge this difference and incorporate processes and structures that initiate decisionmaking at the earliest possible time. Hospice and palliative care are clearly important choices for those who face the issue of self-determined life closure, but their value (both in patient satisfaction and in cost to the system) cannot be realized if there is no system to initiate a timely and informed discussion. 5 5. Informal support at the end of life comes primarily from family, and that situation should probably not change. What is needed is to surround the informal family caregivers with supplemental resources and expertise so that family members can function effectively within their sphere of ability while filling in the inevitable gaps as the medical condition progresses. Often trained volunteers can provide necessary informal support for caregivers at the end of life. Their availability may be the difference between a patient remaining at home and an admission to an institutional setting, or the difference between the burnout of a committed caregiver and the achievement of the goal of a peaceful death among family at home. Hospice and palliative care programs have an established record of collaboration with a myriad of trained volunteers who assist with consumers’ needs when facing end of life. The hospice model offers great promise for solving this chronic problem. 6. Consumer choice can best be protected with the seamless delivery of clear, succinct information and education in an easily navigated system that begins early in the disease process. Because the medical condition will change, the problems will change, the array of necessary services will change and the questions will change. Managing those changes is the joint responsibility of the system and the patient. This raises the critical point that the system fails the patient when the patient has unanswered questions or does not have good options. Consumer choice is only as good as the information and options that are presented to the consumer. Likewise, the information and options will only be valuable if they are provided by the system in a way that aligns with the ultimate goals of the patient and family. The system has to be based on a continuous, ongoing conversation that is grounded in the long-term goals and wishes of the patient and the commitment of the system to provide the most responsive solutions available in the community at the earliest possible time. Developing a solution to a predictable crisis is not a success for the system. The ideal system will not end with a simple referral to a provider to solve today’s problem only; it has to look forward to the issues of the future and infuse today’s advice with preparation for the patient’s continuing evolution as the medical condition progresses. 7. First, the state must recognize that interdisciplinary hospice and homebased palliative care for patients with chronic or life-limiting illness is not only cost effective, but also more important, provides an improved quality of life for patients and their families. Second, the community’s POE must be scrupulously unbiased as to services and service providers. Providing consumers with comprehensive information about all available end of life care options, appropriate types of care and available providers is the principal function of a POE. 6 Third, economic incentives should be provided to healthcare purchasers (employers), health plans, and providers to enhance quality of care at end of life. Palliative care and chronic disease management for end stage heart failure and COPD (as well as other similar conditions) should play an increased role in ensuring high quality health outcomes while lowering system costs. New York State is well positioned to use its purchasing power to leverage this critical improvement in quality end of life care. B. Service Coordination and Management In keeping with the major themes of our general comments, service planning and case management should be designed to conform to the broadest possible arc of disease progression and the associated psychosocial and spiritual needs of the patient and family. Ideally, long-term care should begin with a realistic sense of the likely trajectory of both disease process and care-giving needs. Focus must be on the continuum of care instead of the designation of low or high intensity of need. The same patient may, and likely will, need both at different times. Identifying a patient’s needs as low intensity now may constrain the ability to view this same patient as the high intensity patient of the future. From a design perspective, the system should anticipate these transitions well in advance and be calculated to minimize the obstacles (both real and perceived) to a smooth evolution of care in response to changing needs. The service planning and case management task should therefore not be to answer the question “what now” but instead to have prepared well in advance the answer to the question “if, then.” In such a system, the consumer’s obligation is to engage in the discussion as early as possible and to be active in preparing for the various “if, then” scenarios. The division of responsibilities is nearly equal between the patient and family on the one hand and the long-term care system on the other. It is unfair to expect that consumers will be able to plan responsibly for their long-term care needs in the absence of complete and straightforward knowledge of the long-term problems they face. The consumer can take responsibility for decision –making only to the extent that sufficient information and options have been presented in a coherent way. That means that consumer responsibility begins only after appropriate and sufficient consumer education has been completed. To work best, the system should include long-range thinking, particularly for those with diseases and medical conditions that entail physical deterioration over time and consequent intensification in caregiving needs. Part of the discussion must necessarily include family-based decision-making for advance directives, including health care proxies, DNR orders and living wills. We strongly urge DOH to use an assessment tool such as the Functional Independence Measure (FIM™), developed by UB Foundation Activities, Inc., a 7 not-for-profit corporation associated with the University of Buffalo, The State University of New York. The tool helps ensure that quality of care is scientifically measured and improved. We would be happy to share information on the FIM™. The use of the Medical Orders for Life-Sustaining Treatment (“MOLST,” now authorized in Monroe and Onondaga counties) offers an extraordinarily useful model for starting these discussions. The MOLST form will incorporate advance directives as part of a set of standing physician orders that will travel with the patient throughout the health care system. In completing the forms and incorporating the patient’s wishes in the physician orders, the important decisionmaking task will have begun with real substance. As the care progresses, changes can be made as necessary or desired, but the main point is that the discussion will have begun in a structured and non-hypothetical setting. The MOLST decisions offer the chance to get the process started in a way that answers the most essential questions of both the patient and the medical professional. The POE system should capitalize on this opportunity to begin the conversation. There is no excuse for the long-term care system to defer deep consideration of these questions so that individual answers are provided only in an atmosphere of predictable and preventable crisis. C. Long Term Care Services Long term care restructuring should re-configure services in a way that maximizes benefits to the consumer while using the state’s limited resources with more efficiency and cost effectiveness. Many necessary services are bundled together for purposes of the reimbursement system, but these services can often be used in other varied combinations that produce both lower cost and higher patient and family satisfaction. (Our comments below are organized to respond to the numbered questions appearing in the RFI.) 1. Personal care and other long-term care home based services should be available in combination with hospice services just as hospice service is currently available in the nursing home. Most personal care, consumer driven care, and other long-term care services are designed to help people remain at home. But perversely, the artificial bundling of services often results in placing patients in the nursing home by default. Often just a few hours of personal care is all that would be needed to shore up the caregiver and allow the hospice patient to remain in his or her own home. The restrictions on providing these services to hospice patients force hospice patients to the nursing home when there is inadequate care giving in the home. This increases the financial burden for Medicaid while reducing the satisfaction of the patient and family. Simply stated, no one is winning with these restrictions because they provide incentives for the 8 most expensive and least satisfactory results. Current regulations result in the payment of many multiples of the cost of personal care by functionally forcing the patient to choose the increased expense of nursing home care. Hospice programs have been successful in addressing the decrease in adequate family care giving. Recognizing this trend, Hospice has removed many of the obstacles to caring for these patients. For example, most hospices no longer require that a patient have a caregiver who agrees to provide up to around-the-clock, seven day-a-week care. However, because hospice patients are ineligible for virtually all other inhome long term care services under Medicaid (unless there is a separate medical diagnosis from the hospice diagnosis which creates an independent need for care), hospice patients are left with only costly residential choices when their own support system is insufficient to provide needed custodial care in the home. Under the current system Medicaid pays for the nursing home while Medicare pays for hospice, or Medicaid pays for both. By breaking free of the bundle and paying for even a few hours of care in the home each week, Medicaid could prevent many costly nursing home admissions. Just a few hours of extra care can enhance service to the patient while simultaneously revitalizing the caregiver by allowing continuity of care for the balance of the day. Current regulations prevent access to services outside the bundle. The inapt bundling of services makes everyone a loser; it forces the patient to move to an unwanted setting, makes the caregiver feel like a failure, and compels Medicaid to pay thousands of unnecessary dollars each month. 2, 3, 6. Currently patients on the LTHHC program are denied access to hospice services, while residents in a nursing facility are afforded access to their hospice benefit. As the population ages, more states are allowing LTHHC waiver beneficiaries who also qualify for the Medicare Hospice Benefit to receive both when the care is coordinated. LTHHC and Hospice are offered concurrently in Arizona, Florida, Ohio, Georgia, Massachusetts, Michigan and Texas. Coordination is the key. Coordinated care is cost-effective and better able to keep patients out of the costly nursing home and acute care settings. New York State appears to be orienting its efforts toward more all inclusive care programs for the chronically ill, such as the PACE program. While hospice is willing and eager to work with such programs, there are regulatory blocks and financial disincentives for the programs to work with hospice. This again is a critical and unnecessary barrier to care that has its roots in an inapt bundling system. What hospice does every hour of every day is provide palliative care geared specifically to the end of life. This is a far different type of care than chronic or routine care. Just as 9 hospice care is not seen as a duplication of nursing home care, it should not be regulated as if it represents a duplication or conflict with programs such as PACE. Rather, it should be required that such programs work actively with hospice to assure that all residents of New York State have access to quality end of life care. Effective programs like PACE should not preclude access to other effective programs like hospice; the appropriate combination of the two should produce both higher quality and lower costs. Studies have shown that this is cost effective and greatly improves the patient and family satisfaction. 4. The benefit bundling problem is clearly even more critical when the patient is a child with a limited life prognosis. The PACC (Program of AllInclusive Care for Children) is designed to address this particularly difficult situation and to assure that hospice and palliative care services can be provided in combination with other Medicaid home based services. With the majority of the hospice population, the care giving situation is compromised by the absence, age or infirmity of a caregiver or by the total lack of a support system. With children, generally parental care is compromised by the competing needs of work and of siblings who also require care. Pediatric patients are not generally appropriate for nursing home placement but instead remain in acute care hospitals because all of the necessary care is not available in the home. Including the PACC program in the mega waiver would assure that children with life-limiting illness and their families would have access to a broader range of care options that, in an appropriate combination, would greatly improve their quality of life, lead to more effective utilization of services and keep children in their homes and in their communities to the fullest extent possible. The PACC program was piloted at Hospice Buffalo through a CMS/Children’s Hospice International grant to NYS DOH in 2000-2003. As part of the grant, an actuarial study was conducted by Millaman USA, and their findings showed a cost savings to the Medicaid system. We would be happy to share a copy of this report. Legislation authorizing an additional PACC pilot program was passed by the legislature and signed by the Governor this year. 7. Hospice has a genuine concern that the single point of entry system will be indifferent to hospice care at best and ignorant of hospice care at worst. There should be specific guidelines related to the legitimate and unique place of hospice in this system. Screening questions must be designed to identify patients appropriate for hospice, and HPCANYS would be more than happy to work with the state in developing these and in educating the people who will actually be operating the system once it is developed. 10 D. System Oversight We concur that the electronic data collection system developed as part of system oversight must be statewide, seamless, and comprehensive. It is essential that the system have the capacity to provide trending reports, and also be able to “drill down” to generate reports specific to regional/county issues. (Our comments below are organized to respond to the numbered questions appearing in the RFI.) 1 & 2. The National Hospice and Palliative Care Organization (NHPCO) has developed a Family and Patient Satisfaction tool that has a good track record and is providing valuable data to the hospice industry. The tool is mailed to family members and returned to the Hospice. The 6-page survey takes from 20 – 60 minutes to complete, depending on the level of detail provided. Hospice staff follows up with the family by phone as appropriate. We would be happy to provide a sample of this survey tool. 3. Program evaluation and monitoring of performance standards should be assigned to an independent, statewide entity, not the local agency assigned to implementing the newly restructured system. Having one independent organization evaluating and monitoring performance and standards is crucial to unbiased analysis of how the system is working. The critical features of the data collection efforts must be the standardization of data sets throughout the state and consistency over time to assure the accuracy of any conclusions reached about trends. E. Infrastructure The appropriate administrative structure for restructuring long term care would be to have the POE activity operated by Regional Resource Development Centers, rather than by assigning this responsibility as an additional role for service providers, such as county departments of health. They are the contracted organizations used to implement DOH programs, for example, this one in Binghamton: http://www.stic-cil.org/tbirrdc.html 1. The goal of this restructuring is to assure that people receive the most appropriate level of care, and have access to the most appropriate provider. Having a neutral entity take responsibility for providing information, gathering patient history, and referring individuals to sources of care best accomplishes this task. This would avoid the conflicts of interest that can develop when a provider’s reimbursement would be reduced if the provider refers the patient to another source of care. 2. Regional Councils comprised of representatives of consumer groups and long-term care providers, including hospice, should oversee the work of Regional Resource Development Centers. The term "Regional Council" 11 describes an oversight group that would monitor the Development Centers’ appropriate use of care providers and serve as a watchdog to make sure people aren't being directed for care to some favored provider groups instead of to the most appropriate provider. The Councils would be responsible for assuring that the Centers have up-to-date information on available services, and for monitoring appropriateness of service utilization. 3. Some major obstacles to patient access to appropriate levels of care are presented by reimbursement rules. Examples of this include: a. Medicaid eligibility rules for the Long Term Home Health Care Program include “spousal impoverishment” criteria, while determining Medicaid eligibility for hospice patients does not. This is a barrier for access to Hospice care for low-income persons. b. The Medicare SNF benefit and the state’s interest in Medicare Maximization, results in many dying persons being placed in the Medicare SNF benefit with a focus on rehabilitation upon admission to a nursing home, rather than being more appropriately admitted to a hospice program. c. Medicaid should pay for home-based interdisciplinary palliative care services on a per diem basis, and hospices should be authorized service providers. d. Precluding hospice as an option for patients in the LTHHC program denies patients access to appropriate care. Consideration should be given to allow hospice to be offered concurrently with LTHHC, as it is with traditional nursing facility care. Duplication is avoided by a coordinated plan of care. 4. The Regional Resource Development Centers should be charged with tracking the impact of reimbursement rules on the appropriate utilization of services within the network of long-term care services. F. Cost Neutrality It would be important to Hospice that cost neutrality be achieved through a case mix or bands system which recognizes the necessary increase in cost of care at end of life. Other systems could present a barrier to hospice being chosen as a provider of care if they do not provide particular exclusions for hospice and end of life care. An unweighted system could also result in less than adequate care at end of life which would inadvertently lead to care being unexpectedly and unnecessarily more expensive. For example, if the state adopted individual or aggregate caps which allowed no margin for end of life, hospice might appear too expensive and not be selected. However, without the customized care of hospice to continually address the symptoms associated with end of life, dying patients often end up in hospitals with extensive treatment which is not only 12 costly, but designed to cure or prolong life rather than provide comfort. HPCANYS would be happy to work with the State to assure that any cost neutrality model adequately addresses the appropriate care at end of life. G. Implementation Ideally, the implementation of systemic change will begin with an analysis of the ideal end point of long-term care – a good death following a full life. If that is the ultimate goal, the planning and implementation of the system can be reverse engineered to accommodate both the legitimate needs of patients and the fiscal constraints of the system generally. In any case, implementation will best begin with the initiation of services that generate, promote and sustain ongoing conversation about the patient’s long-term goals in light of the available individualized medical possibilities. The implementation process must begin with a commitment to a culture of education, discussion and decision-making in a collaborative and farsighted system. Conclusion We would like to underscore that the waiver must create a smooth, seamless, appropriate transition process for patients. Transition planning offers the greatest potential for systemic improvement. The new waiver should be grounded in a process design, not a program design. It is imperative that the waiver system focus on planning long term care for the entire disease process and over a multiyear period, anticipating the foreseeable changes in medical conditions that will inevitably necessitate changes in care. Lastly, long term care implicitly includes end-of-life care. The waiver system must be explicit about the very real and practical need to include end-of-life education, and advance care planning as part of the process. Thank you for considering our recommendations and comments. If you have questions or need additional information, please contact me at 518/446-1483 or kmcmahon@hpcanys.org. Sincerely, Kathy A. McMahon President and CEO cc: Dennis P. Whalen, Executive Deputy Commissioner, NYS Dept. of Health David V. Wollner, Director, Office of Health Systems Management 13