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Blueprint for Success: Translating Innovations from the Field of Palliative Medicine to the Medical-Legal Partnership a
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Lynn Hallarman MD , Denise Snow JD , Manasi Kapoor , Carrie d
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Brown MD , Kerry Rodabaugh MD & Ellen Lawton JD a
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Stony Brook Medicine
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Stony Brook Medicine School of Nursing
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Advisory Board Company
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University of Arkansas for Medical Sciences
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University of Nebraska Medical Center
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Department of Health Policy , George Washington University Published online: 26 Mar 2014.
To cite this article: Lynn Hallarman MD , Denise Snow JD , Manasi Kapoor , Carrie Brown MD , Kerry Rodabaugh MD & Ellen Lawton JD (2014) Blueprint for Success: Translating Innovations from the Field of Palliative Medicine to the Medical-Legal Partnership, Journal of Legal Medicine, 35:1, 179-194, DOI: 10.1080/01947648.2014.885330 To link to this article: http://dx.doi.org/10.1080/01947648.2014.885330
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The Journal of Legal Medicine, 35:179–194 C 2014 American College of Legal Medicine Copyright 0194-7648 print / 1521-057X online DOI: 10.1080/01947648.2014.885330
BLUEPRINT FOR SUCCESS: TRANSLATING INNOVATIONS FROM THE FIELD OF PALLIATIVE MEDICINE TO THE MEDICAL-LEGAL PARTNERSHIP Lynn Hallarman, MD, Denise Snow, JD, Manasi Kapoor, Carrie Brown, MD, Kerry Rodabaugh, MD, and Ellen Lawton, JD*
INTRODUCTION Palliative medicine and medical-legal partnership (MLP) are two distinct healthcare delivery innovations that share common strategies, opportunities, and challenges. This article uses the framework of palliative medicine to offer insights and recommendations on how to move the MLP field forward, toward greater integration and sustainability. Palliative medicine is a medical sub-specialty whose focus is to relieve the symptoms, pain, and stress of a serious illness—whatever the diagnosis or prognosis.1 Palliative care is inherently interdisciplinary and requires expertise across a broad range of disciplines to meet the care demands of patients with high-intensity symptom management, complex personal-social-legalspiritual needs, family dynamics, and a multiplicity of issues surrounding goals of treatment.2 Palliative medicine can be integrated into the care of patients across a broad age range, from pediatrics to geriatrics, and can occur * Lynn
Hallarman is the Director of Palliative Medicine and Associate Professor of Internal Medicine at Stony Brook Medicine. Denise Snow is a Staff Attorney Nassau/Suffolk Law Services Committee, Inc., and a Clinical Associate Professor at Stony Brook Medicine School of Nursing. Manasi Kapoor is a Senior Analyst at the Advisory Board Company. Carrie Brown is an Assistant Professor at the University of Arkansas for Medical Sciences. Kerry Rodabaugh is an Associate Professor at the University of Nebraska Medical Center. Ellen Lawton is the Lead Research Scientist at the National Center for Medical-Legal Partnership, Department of Health Policy at George Washington University. Please address all correspondence to Dr. Hallarman at [email protected]. 1 Bill McInturff & Elizabeth Harrington, 2011 Public Opinion Research on Palliative Care, CTR. TO ADVANCE PALLIATIVE CARE (2011), http://www.capc.org/tools-for-palliative-care-programs/marketing/ public-opinion-research/2011-public-opinion-research-on-palliative-care.pdf. 2 Lynn Hallarman & Denise Snow, The Medical-Legal Partnership: An Alliance Between Doctors and Lawyers in the Care of Patient-Clients with Advanced Life-Limiting Illness, 17 N.Y. ST. BAR ASSN.
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while patients are receiving curative or disease-modifying treatments, such as chemotherapy. MLP integrates legal advocacy into the healthcare setting and addresses health-related legal problems that impact vulnerable patients and their families’ ability to cope with illness.3 MLP attorneys partner with the frontline healthcare team to resolve legal matters that have an impact on the patient’s health or are created or aggravated by the patient’s health issues.4 MLPs have broad applicability across populations, including children, the elderly, and those with chronic or life-threatening illness. MLPs can assist clinicians, both in the outpatient clinic and hospital settings, in identifying and addressing major sources of financial-legal-social anxieties surrounding legacy planning, guardianships/planning for minor children and disabled adult children, future planning documents, access to care, and next steps in care. The similarities and overlap between palliative care and the MLP are striking. Like the field of palliative medicine, MLP is fundamentally interdisciplinary. MLP relies on close collaboration between healthcare team members and outside legal professionals. Palliative care and MLP help integrate bedside healthcare against a backdrop of complex bureaucracies and systems that exacerbate care fragmentation, create patient and family stress, and promote both inadequate advance care planning and lagging referrals for essential benefits and services.5 Both fields are rooted in patient and family advocacy, with access to quality, comprehensive care for vulnerable patients as an overarching priority, and both fields have emerged from innovations that challenge traditional paradigms of healthcare delivery. This article examines the intersection between palliative medicine and MLP, as well as how the field of palliative medicine can inform the strategic growth of MLP as essential patient care and provide a roadmap for the future. I. THE EMERGENCE AND GROWTH OF PALLIATIVE CARE IN THE UNITED STATES The lessons learned from palliative care as it applies to MLP can first be examined by reviewing the history of palliative medicine. Palliative care HEALTH L.J. 44, 46 (2012); see Kerry J. Rodabaugh et al., A Medical-Legal Partnership as a Component of a Palliative Care Model, 13 J. PALLIATIVE MED. 13, 15-18 (2009), http://www.medical-legalpartnership. org/sites/default/files/page/MLP%20as%20a%20Component%20of%20a%20Palliative%20Care%20 Model.pdf. 3 Ellen Lawton et al., Medical-Legal Partnership: A New Standard of Care for Vulnerable Populations, in POVERTY, HEALTH & LAW: READINGS & CASES FROM MEDICAL-LEGAL PARTNERSHIP 74 (Elizabeth Tobin Tyler et al. eds., 2011). 4 Id. at 75; N.Y. ST. PUB. HEALTH L. A3304-A § 22 (2011); see M. Klein et al., Doctors and Lawyers Collaborating to HeLP Children—Outcomes from a Successful Partnership Between Professions, 24 J. HEALTHCARE POOR & UNDERSERVED 1063 (2013). 5 See NAT’L CTR. FOR MEDICAL-LEGAL PARTNERSHIP, http://www.medical-legalpartnership.org (last visited Oct. 29, 2013).
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developed initially as an outgrowth of the hospice movement first started in the 1960s in the United Kingdom with the pioneering work of Cecily Saunders.6 The hospice model grew from observations and case studies by Saunders and others documenting the bedside experience of the dying cancer patient. The subsequent interdisciplinary care approach fundamental to hospice care developed in response to perceived gaps in oncology care surrounding symptom management and the care of the family.7 As the hospice movement took hold in the United States in the 1970s, it resulted in the establishment of the Hospice Medicare Benefit in 1982, which, for the first time, provided a funding mechanism for the care of the terminally ill.8 The hospice Medicare model is based on the cancer death trajectory, which typically has a predictable period of functional debility in the months before death, and allows, based on the patient’s preferences, for the initiation of home hospice care that includes the treatment of symptoms, spiritual care, support for families, and bereavement.9 Hospice provides care for those in the last weeks or months of life. Patients must have a least two medical physicians certify a prognosis of less than six months to live. Life-prolonging treatments are discontinued because they have become ineffective or intolerable, and/or they are not the patient’s choice.10 The emergence of the field of palliative medicine throughout the 1980s and 1990s in the United States, as distinct from hospice care, initially occurred in response to research evidence showing that hospitalized patients, including those with heart and lung disease, dementia, and stroke, as well as cancer, often experience inadequate symptom management, poor communication with physicians, and unsustainable demands on family support systems.11 This led to the establishment of hospital-based palliative care teams that reached beyond cancer care to patients with less predictable prognoses and illness trajectories characterized by long periods of chronic illness punctuated by acute exacerbations. Underpinning the ongoing growth of palliative care programs in hospitals across the United States has been the unprecedented growth of our aging population, the members of which often have one or more non-cancer chronic illnesses, and the evolution of the cancer trajectory into a
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David Clark, From Margins to Centre: A Review of the History of Palliative Care in Cancer, 8 LANCET ONCOLOGY 430, 430 (2007). 7 Id. at 434. 8 Memorandum from Stuart Wright, Deputy Inspector General for Evaluation and Inspections, Dep’t of Health & Human Servs. 3-4 (Sept. 4, 2009), http://oig.hhs.gov/oei/reports/oei-02-06-00223.pdf. The Tax Equity and Fiscal Responsibility Act of 1982 includes a Medicare hospice benefit, but it included a 1986 sunset provision. Id. In 1986, the Medicare Hospice Benefit was enacted, making the benefit permanent. Id. Under this Act, states are given the option of including hospice in their Medicaid programs—thereby making hospice care available to nursing home residents. Id. 9 See id. 10 Id. 11 See A Controlled Trial to Improve Care for Seriously Ill Hospitalized Patients: The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT), 274 JAMA 1591 (1995).
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multi-year, chronic disease.12 Non-hospice palliative care is appropriate at any point in a serious illness. It can be provided at the same time as life-prolonging treatment. The key difference in comparing palliative care to hospice is that palliative care has no prognostic requirement, no need to choose between treatment approaches.13 Patients with congestive heart failure or emphysema are typical examples of patients who often need palliative intervention during long periods of time to mitigate debilitating symptoms, such as breathlessness, fatigue, low appetite, or loss of function. Also, as chronic, serious illness progresses, patients and families become high risk for caregiver distress, triggering hospitalization, nursing home placement, and financial ruin. Integrating palliative care into the care of the seriously ill is a demonstrated strategy to improve clinical outcomes, reduce unnecessary emergency room and hospital utilization, and promote both advance care planning discussions and patient/family choice.14 In the 1990s, palliative care emerged as a distinct field of medicine with: the formation of national organizations, such as the American Academy of Hospice and Palliative Medicine; development of a national certification exam; and expansion of educational initiatives. At the same time, the Robert Wood Johnson Foundation established the Last Acts Institute and the Project on Death in America, with the goal of improving end-of-life care in the United States.15 The Robert Wood Johnson initiative, combined with sentinel reports from the Institute of Medicine and the National Institute of Health promoting palliative care, helped support leadership development and groundbreaking research that would come to fruition in the early 2000s.16 A key turning point for palliative care occurred in 2002, when the Veterans Administration (VA) embraced the national expansion of palliative care consultation teams in all VA facilities, making the VA the first healthcare system in the United States to formalize palliative care consultation on a systems level.17 In 2006, hospice and palliative medicine were formally recognized by the American Board of Medical Subspecialties (ABMS) and the Accreditation Council for Graduate
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See Gerald F. Anderson, Medicare and Chronic Conditions, 353 NEW ENG. J. MED. 305 (2005). Diane E. Meier, Increased Access to Palliative Care and Hospice Services: Opportunities to Improve Value in Health Care, 89 MILBANK Q. 343, 346 (2011), http://www.capc.org/capcsearch/?submitsearch =false&search=prognostic+requirement. 14 See Frances M. Wu et al., Effects of Initiating Palliative Care Consultation in the Emergency Department on Inpatient Length of Stay, 16 J. PALLIATIVE MED. 1 (2013). 15 See Felicity Aulino & Kathleen Foley, The Project on Death in America, 94 J. ROYAL SOC’Y MED. 492 (2001); Lori De Milto, Assessment of Last Acts Program Provides Recommendations for Future Direction, ROBERT WOOD JOHNSON FOUND. (Oct. 2002), http://www.rwjf.org/en/research-publications/ find-rwjf-research/2002/10/assessment-of-last-acts-r–program-provides-recommendations-for-.html. 16 About HCFO, CHANGES IN HEALTH CARE FINANCING & ORGANIZATION, http://www.hcfo.org/about (last visited Oct. 27, 2013). 17 See Office of Public and Intergovernmental Affairs, VA Is Leader in Hospice and Palliative Care, U.S. DEP’T OF VETERAN AFF. (Jan. 8, 2008), http://www1.va.gov/opa/pressrel/pressrelease.cfm?id=1442. 13
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Medical Education (ACGME).18 This helped codify the presence of palliative medicine programs in academic medical centers and increase the workforce of palliative medicine specialists. Palliative care was literally redefined in 2010, when a landmark study demonstrated that integrating palliative care early into the care of patients with advanced lung cancer significantly extended survival, in addition to improving quality outcomes and decreasing death in intensive care settings.19 This study established that palliative care should be integrated early on with usual care and should be available on an outpatient basis.20 Another critical study, conducted in 2011, demonstrated that patients who received palliative care accrued significantly lower costs and experienced similar clinical outcomes as compared to a matched cohort of patients who received only usual care.21 These two sentinel studies have led to validation and greater acceptance of the burgeoning palliative care specialty. II. THE EMERGING FIELD OF MLP MLP integrates legal care directly into patient healthcare using three levels of legal intervention: (1) directly with the patient, (2) at the clinic level, and (3) through policy advocacy.22 The MLP goal is to prevent and/or resolve health-harming legal problems arising from the social determinants of health. The expertise of an attorney is applied to specific health-related legal problems that, otherwise, cannot be resolved without legal advocacy for patients and families without financial means to hire an attorney. For example, there are families living in poverty that are wrongfully denied food supports and educational benefits, necessary resources to meet their daily needs and promote health. There are children living in housing with mold or rodents, in clear violation of housing laws, whose physical environment is making them sick. And there are seniors denied long-term-care coverage to which they are entitled, whose lack of access to insurance prevents them from getting the medical care they need.23 Despite this vivid connection between health and law, and the fact that civil legal aid offices and healthcare institutions have long treated the same 18
ABMS Establishes New Subspecialty Certificate in Hospice and Palliative Medicine, AM. BD. MED. SPECIALTIES (Oct. 6, 2006), http://www.abms.org/News and Events/downloads/NewsubcertPalliativeMed. pdf. 19 Jennifer S. Temel et al., Early Palliative Care for Patients with Metastatic Non–Small-Cell Lung Cancer, 363 NEW ENG. J. MED. 733, 733 (2010). 20 Id. 21 Rolfe Sean Morrison et al., Cost Savings Associated with US Hospital Palliative Care Consultation Programs, 168 ARCH. INTERNAL MED. 1783, 1785 (2008). 22 Lawton et al., supra note 3, at 81. 23 Id.
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patient/clients, there had never been a coordinated effort by the health and legal professions to address health-related legal needs, or to understand that many legal problems are health problems—until the advent of MLPs. While the core of every MLP is the same—an existing healthcare institution and an existing legal institution coming together to integrate their services and address the health-related legal needs of vulnerable patients—the model is inherently flexible, and, therefore, able to respond to the local needs and resources of a particular community.24 As of 2013, nearly 300 hospitals and health centers in the United States had developed MLPs in a range of healthcare settings, including rural and urban community health centers, children’s hospitals, veterans’ medical centers, and specialty care.25 They address the needs of children, families, veterans, chronically ill individuals, and the elderly. Like palliative care, MLP emerged as an innovation in the field, and grew organically in response to perceived needs, local adaptation and promotion, and an increasing awareness by healthcare providers that unmet legal needs play a critical role in the health and well-being of vulnerable patients. The first MLP began in Boston Medical Center’s pediatrics department in 1993 when the first attorney was hired to help address the housing conditions—such as mold and rodent infestations—that were negatively impacting child health, especially for children with asthma.26 But there are many historical antecedents to MLP—examples where legal and health partners have come together over the years to address local issues related to the social determinants of health—like the provision of legal services in the care of HIV/AIDS patients in the 1980s.27 Dr. Jack Geiger, founder of the community health center model and a member of the National Medical-Legal Partnership Advisory Council, speaks eloquently of an even earlier example, hiring a attorney at the first community health center in Mississippi in the 1960s to handle discrimination and other legal issues that plagued the community.28 Emerging evidence demonstrates that patient-clients benefit substantially from the addition of legal expertise to the patient care team and from the elevation of the healthcare provider voice in policy decisions and regulations.29 24
Megan Sandel et al., Medical-Legal Partnerships: Transforming Primary Care by Addressing the Legal Needs of Vulnerable Populations, 29 HEALTH AFF. 1697, 1704 (2010), http://content.healthaffairs.org/ content/29/9/1697.full.pdf. 25 The Movement, NAT’L CTR. FOR MEDICAL-LEGAL PARTNERSHIP, http://www.medical-legalpartnership.org/ movement (last visited Nov. 2, 2013). 26 POVERTY, HEALTH & LAW, supra note 3, at 723. 27 Ellen Lawton, Medical Legal Partnerships: From Surgery to Prevention?, MGMT. INFO. EXCH. J. 37, 38 (2007), http://www.washingtonmlp.org/documents/439011Medical-Legal%20Partnerships%20%20From%20Surgery%20to%20Prevention.pdf. 28 Dr. Jack Geiger, Remarks at the 2013 National Medical-Legal Partnership Summit (Apr. 10, 2013) (on file with author). 29 See, e.g., Tishra Beeson et al., Making the Case for Medical-Legal Partnerships: A Review of the Evidence, NAT’L CTR. FOR MEDICAL-LEGAL PARTNERSHIP (2013), http://www.medical-legalpartnership.org/
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But the professions themselves benefit in significant ways, as well.30 On the healthcare side, MLP builds capacity to handle patient legal needs, allowing healthcare team members to work at the top of their professional abilities, rather than struggling to navigate complex government bureaucracies.31 Healthcare institutions benefit from a return on investment, in part, by helping control costs for especially high utilizers of healthcare resources.32 The civil legal aid community benefits from expanding its capacity to provide care and introducing the ability to prevent legal problems, rather than simply having to react to legal problems that plague vulnerable communities.33 III. MLP-PALLIATIVE CARE INTERSECTION The inherent challenges and similarities of the conceptual models of both palliative care and MLP intersect across three key domains: (1) practice, (2) cost and impact, and (3) workforce. (See Table 1.) A. Practice The heterogeneity in both the palliative care and MLP patient across age and diagnosis makes early patient identification as a preventive strategy an ongoing challenge and a target for progress. In the case of palliative care, despite the mounting evidence that early consultation is clearly associated with better quality-of-life outcomes and improvements in advance care planning, patients with serious illness typically come to the attention of palliative sites/default/files/page/Medical-Legal%20Partnership%20Literature%20Review%20–%20February% 202013.pdf; Mary M. O’Sullivan et al., Environmental Improvements Brought by the Legal Interventions in the Homes of Poorly Controlled Inner-City Adult Asthmatic Patients, 49 J. ASTHMA 911 (2012); Robert Pettignano et al., Medical-Legal Partnership: Impact on Patients with Sickle Cell Disease, 128 PEDIATRICS 1482 (2011), http://pediatrics.aappublications.org/content/128/6/e1482.full.pdf; Dana Weintraub et al., Pilot Study of MLP to Address Social and Legal Needs of Patients, 21 J. HEALTHCARE POOR & UNDERSERVED 157 (2010), http://www.medical-legalpartnership.org/sites/default/files/page/ Pilot%20Study%20of%20MLP%20to%20Address%20Social%20and%20Legal%20Needs%20of%20 Patients.pdf; Anne M. Ryan et al., Pilot Study of Impact of MLP on Patients Perceived Stress and Well-Being, 23 J. HEALTHCARE POOR & UNDERSERVED 1536 (2012). 30 See, e.g., JoNel Newman, Miami’s Medical-Legal Partnership: Preparing Lawyers and Physicians for Holistic Practice, 9 IND. HEALTH L. REV. 473 (2012); Randye Retkin et al., Lawyers and Doctors Working Together: A Formidable Team, 20 HEALTH LAWYER 33 (2007), http://hlaw. ucsd.edu/prospectivestudents/documents/TheHealthLawyerArticle.pdf; Ellen Cohen et al., MedicalLegal Partnership: Collaborating with Lawyers to Identify and Address Disparities, 25 J. GEN. INTERNAL MED. 136 (2010), http://www.medical-legalpartnership.org/sites/default/files/page/MedicalLegal%20Partnership%20-%20Collaborating%20with%20Lawyers(1).pdf; Robert Pettignano et al., The Health Law Partnership: Adding a Lawyer to Heath Care Team Reduces Costs and Improves Provider Satisfaction, 18 J. PUB. HEALTH MGMT. E1 (2012); Edward Paul et al., Medical-Legal Partnerships: Addressing Competency Needs Through Lawyers, 1 J. GRAD. MED. EDUC. 304 (2009). 31 See Paul et al., supra note 30. 32 See Rodabaugh et al., supra note 2; James A. Teufel et al., Rural Medical-Legal Partnership and Advocacy: A Three Year Follow-Up Study, 23 J. HEALTHCARE POOR & UNDERSERVED 705 (2012). 33 See Lawton, supra note 27.
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Practice is inherently interdisciplinary and interprofessional.
Service typically targets highest utilizers of healthcare services. Outcomes and impact of the program is difficult to quantify. Insurers do not reimburse services, or reimbursements are insufficient for high-intensity intervention. Financial model proves potentially or demonstrable cost-savings. Healthcare team lacks basic training and education.
Heterogeneity of patients across age and diagnosis demands expertise for early identification. The intervention is frequently misunderstood.
√ (services unreimbursed)
√ √ (insufficient reimbursement)
OF
Medical-legal partnership teams include physicians, nurses, social workers, community-health workers, patient navigators, attorneys, and paralegals.
√
No training in identifying and managing health-related legal needs or basic advocacy.
MEDINA COUNTY (Aug. 24, 2011), http://www.hospiceofmedina.org/dynamic/files/
Palliative care teams include physicians, nurses, nutritionists, chaplains, and social workers.
Minimal training on symptom management and leading end-of-life planning conversations. √
√
√
Legal professionals in healthcare settings traditionally focus on risk management, not patient or family advocacy, and healthcare team members believe legal problems can be fully addressed by social work or case management staff. √
Palliative care is confused with hospice care, as confirmed by a recent study, which found that 70% of the public does not understand palliative care.34
√
√
√
√
Medical-Legal Partnership
Palliative Care
Release Findings of Public Opinions of Palliative Care, HOSPICE CARE Palliative%20Care%20in%20the%20News.pdf.
34Groups
Workforce
Cost and Impact
Practice
Domain
TABLE 1. Comparison of Domains of Practice, Impact, and Workforce of Palliative Care and Medical-Legal Partnership
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medicine providers in a state of crisis, in the hospital setting, and, often, in the advanced stages illness. Too often, discussions about goals of care are had only when treatment failure is obvious and, unfortunately, in the instance of the non-decisional patient. At this point, families of hospitalized palliative care patients are often exhausted and overwhelmed due to the strains of caregiving.35 Lack of advance care planning also can lead to late identification of palliative care patients with complex problems, for example, lack of long-term-care insurance coverage, resulting in prolonged hospitalizations and caregiver strain, precipitating collapse of family support; or personal financial issues (i.e., mounting unpaid debt and/or lack of insurance) that could have been resolved upstream in the decisional patient, with the appointment of an agent through a power of attorney. Without early intervention and access to proper legal and palliative care resources, such problems become, instead, the purview of the family, the hospital, and the court system. Similarly, people with chronic legal issues, such as housing instability or other potentially health-related legal and/or financial strains, including job or insurance loss, can manifest as medical crisis. For instance, when an eviction notice has been served to a chronically ill individual who is subsequently tipped into homelessness and medical deterioration, or when lack of insurance forces a late presentation of serious illness in the emergency room. The legal system is not structured to promote “preventive law,” especially for lowincome or otherwise vulnerable people, and taking steps to prevent a legal crisis in the setting of medical illness, such as the urgent need for designation of guardianship for minor children or attainment of Medicaid can be challenging, if not impossible.36 Moreover, the pervasive lack of legal resources means that the legal community is perennially administering “emergency” legal treatment and has not begun the conceptual or organizational process to shift resources upstream toward prevention.37 Palliative care continues to address the issue of earlier identification of palliative-appropriate patients through field advances, including emerging integrated system responses, such as electronic medical record triggers, and redefining timing of palliative consultation and evaluation.38 Operational metrics for hospital-based palliative care programs assist consult teams in defining patient populations and tracking specific patient outcomes, such as discharge 35
See generally Kenneth Covinsky et al., The Impact of Serious Illness on Patients’ Families: Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment, 272 JAMA 1839 (1994). See POVERTY, HEALTH & LAW, supra note 3, at 723. 37 Ellen M. Lawton, Integrating Healthcare and Legal Services to Optimise Health and Justice for Vulnerable Populations: The Global Opportunity, in II THE LAW OF THE FUTURE AND THE FUTURE OF LAW 78 (Sam Mueller et al. eds., 2012), http://www.fichl.org/fileadmin/fichl/documents/LOTFS/LOTFS 1 Web.pdf. 38 See David E. Weissman & Diane E. Meier, Identifying Patients in Need of a Palliative Care Assessment in the Hospital Setting: A Consensus Report from the Center to Advance Palliative Care, 14 J. PALLIATIVE MED. 1 (2011). 36
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destination, readmission rates, and successful symptom control to improve identification of patients most likely to benefit from a palliative intervention.39 On a national scale, the Center to Advance Palliative Care launched an educational campaign to help patients and families understand palliative care to promote patient self-advocacy and patient choice.40 On a legislative level, the State of New York codified patient and family rights to information about palliative care and access to palliative care consultation through amendment of Public Health Law 2997-C and D: The Palliative Care Information Act (PCIA)41 and the Palliative Care Access Act (PCAA).42 The PCIA, Public Health Law 2997-C, requires attending healthcare practitioners to offer terminally ill patients palliative care information and counseling, including information about prognosis, the range of options appropriate to the treatment, the risks and benefits associated with those options, and the patient’s “legal rights to comprehensive pain and symptom management.”43 The PCAA, Public Health Law 2997-D, requires healthcare providers, hospitals, and nursing homes to establish policies and procedures for providing access to information and counseling regarding appropriate palliative care options to patients with advanced, life-limiting conditions and illnesses or to those authorized to make medical decisions for them.44 It also requires hospitals and nursing homes to facilitate access to appropriate palliative care consultations and services, including pain management consultations and services, and referrals consistent with patient needs and preferences, when appropriate.45 B. Cost and Impact Both palliative care and MLPs serve patients with high-intensity, timeintensive needs. The typical new palliative consult can take 2.8 hours, often with the expectation for repeated, intensive family meetings, detailed documentation, and time-consuming interactions with primary referring teams.46 Legal advocacy through MLP also frequently requires time-intensive interventions. In some MLP settings, attorneys are called to the bedside for legal consultation with clients and their families, which may trigger lengthy legal
39
See David E. Weissman & Diane E. Meier, Operational Features for Hospital Palliative Care Programs: Consensus Recommendations, 11 J. PALLIATIVE MED. 1189 (2008). 40 Get Palliative Care, http://www.getpalliativecare.org/ (last visited Nov. 2, 2013). 41 Palliative Care Information Act, N.Y. STATE PUB. HEALTH LAW § 2997-c (2011). 42 Palliative Care Access Act, N.Y. STATE PUB. HEALTH LAW § 2997-d (2011). 43 Id. § 2997-c(d)(2). 44 Id. § 2997-d. 45 Id. 46 J. Cameron Muir et al., Integrating Palliative Care into the Outpatient, Private Practice Oncology Setting, 40 J. PAIN & SYMPTOM MGMT. 126, 132 (2010).
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interventions, including time in court, appeals, petitions, and the drafting of legal documents.47 The time intensity of both services is problematic, for different reasons. On the palliative care side, physician productivity is measured by volume and billing, and palliative care is a cost center for most institutions without associated revenue to pay the full cost of its provision.48 Palliative care is a billable physician service on governmental and private insurance plans and recognized as a standard of care by accrediting organizations, such as The Joint Commission.49 Nevertheless, like much of medical billing, the reimbursement rate does not sufficiently cover the time requirements needed to work with a patient and/or family.50 On the MLP side, there is no reimbursement or payment mechanism for legal professionals who are part of the healthcare team. This is unlike the case for social workers or nutritionists.51 One of the most powerful aspects of MLP, however, is the opportunity to leverage existing community legal resources in the healthcare setting, thereby facilitating a mechanism for direct legal advocacy by a legal expert and freeing the clinical team to actuate effective medical care plans.52 Nevertheless, it is not yet sustainable to integrate legal professionals into specialty services, like palliative care, without a funding stream that emanates from the healthcare entity, and the MLP has yet to be fully recognized for its positive effects on clinical outcomes by clinical providers, insurers, and other payers. Currently, financial support for MLPs varies, ranging from public funding to private philanthropy to healthcare institutional contributions. Palliative care outcomes research has been critical in making the case for expanded palliative care services in the area of care domains as such services affect the individual patient, as well as the impact, on the systems level, of palliative care intervention on utilization, length of stay, readmissions, patient-family satisfaction, hospital mortality, and cost savings. Palliative care has been identified as key to hospital reform because of its link both to lower utilization and improved outcomes. For instance, high costs in the last few
47
Medical-Legal Partnership Benefits Cancer Patients, NAT’L CTR. FOR MEDICAL-LEGAL PARTNERSHIP (Aug. 21, 2009), http://www.medical-legalpartnership.org/news/medical-legal-partnership-benefitscancer-patients. 48 Mark Kelley, Productivity Still Drives Compensation in High Performing Group Practices, HEALTH AFFAIRS BLOG (Dec. 20, 2010), http://healthaffairs.org/blog/2010/12/20/productivity-still-drivescompensation-in-high-performing-group-practices/. 49 See generally Rodabaugh et al., supra note 2. 50 Workgroup Report on Hospice Care, Palliative Care and End of Life Counseling, MD. OFFICE ATTY. GEN. (2010), http://www.oag.state.md.us/Healthpol/Hospice and Palliative Care Workgroup Report .pdf. 51 See generally Teufel et al., supra note 32. 52 See generally id.
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weeks of life are associated with poorer quality of death.53 Moreover, patients who speak with their physicians about their wishes and care preferences incur significantly lowers healthcare costs in the last week of life.54 The Patient Protection and Affordable Care Act (PPACA) is currently a potential opportunity for palliative care to qualify under a bundled payment strategy, and to promote sustainable and expanded interdisciplinary healthcare teams that, heretofore, have been funded almost exclusively through outside, unsustainable philanthropic and private funds.55 MLP is currently not a recognized service by health insurers and other payers. Payment models for sustainable MLP services, such as joint funding models by the hospital system and the legal agency, are on track to demonstrate high value for patients, providers, and hospitals and health centers—paving the way for transitioning to a billable service. A payment model similar to hospice care’s bundled payment, in which the agency receives a set dollar amount for each day the patient is enrolled in hospice, is another potential payment model for MLP. C. Workforce Palliative medicine and MLP also share the opportunity and challenges of building a twenty-first-century, interprofessional workforce that is equipped to address the complex needs of vulnerable patients and their families. As described above in section I, the palliative medicine field has made substantial advances toward improving the standard of care through the implementation of certification exams and associated curriculum for physicians and nurse practitioners, as well as the development of fellowship training for physicians and social workers.56 Targeted workforce development and training strategies for oncologists, geriatricians, critical care, and emergency medicine providers are aimed at increasing integrated primary palliative care.57 The Center to Advance Palliative Care has seeded a highly innovative national approach to workforce education through the collection and sharing of best practices; this effort has catalyzed program building on a national scale—particularly important for a field whose providers are often working 53
Baohui Zhang et al., Health Care Costs in the Last Week of Life: Associations with End of Life Conversations, 169 ARCH. INTERNAL MED. 480, 480 (2009). 54 Benjamin Chastek et al., Health Care Costs for Patients with Cancer at the End of Life, 8 J. ONCOLOGY PRACTICE 75s, 79s (2012). 55 Diane E. Miller, Increased Access to Palliative Care and Hospice Services: Opportunities to Improve Value in Health Care, 89 MILBANK Q. 343, 365-69 (2011), http://www.ncbi.nlm.nih.gov/pmc/ articles/PMC3214714/pdf/milq0089-0343.pdf; see also Center to Advance Palliative Care, http:// www.capc.org (last visited Oct. 29, 2013). 56 American Academy of Hospice and Palliative Medicine, http://www.aahpm.org (last visited Oct. 29, 2013). 57 See Eduardo Bruera, Conceptual Models for Integrating Palliative Care at Cancer Centers, 15 J. PALLIATIVE MED. 1261 (2012).
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in isolation as the only palliative care provider in an institution or, even, in a region.58 In the MLP field, both clinical and legal partners, alike, are in the earliest stages of understanding and developing appropriate mechanisms for workforce development and training. While there are a handful of flexible legal fellowship programs that have seeded MLPs, there are no certifications, clinical fellowships, consensus guidelines, or leadership mechanisms that would drive workforce capacity and training toward enhanced quality and growth.59 In MLP practice, both the legal and the healthcare partners require substantial interprofessional training.60 For attorneys, it should include knowledge and understanding of the complexities of the healthcare landscape from a clinical or patient view; a broad “primary care” orientation toward: legal issue areas, including health insurance, family law, public benefits, and housing; an understanding of how to triage legal issues for resolution with healthcare partners; and a comprehension of the role and importance of data collection and research.61 For healthcare team members who participate in MLP, it is crucial to be grounded in the basic dynamics of social determinants of health, and poverty and legal needs, alongside an understanding of the legal community, in general, and how best to partner with legal professionals and others to promote patient well-being. As with palliative care providers, solidifying the title, role, and skill set will help the legal partner become a regular and familiar referral resource for the medical team. Finally, both the palliative care and legal communities suffer as a result of public perception of their roles and activities, as well as misunderstanding by the medical community. Palliative care is frequently seen as synonymous with “end-of-life care”—a phrase that is vulnerable to misperceptions, particularly when associated with governmental oversight.62 In 2009, the requirement in the PPACA that physicians be reimbursed by Medicare once every five years if a Medicare beneficiary asks them for consultation on advanced care, “endof-life” planning considerations underwent massive distortions in the media 58
Dale Lupu, Estimate of Current Hospice and Palliative Medicine Physician Workforce Shortage, 40 J. PAIN & SYMPTOM MGMT. 899 (2010). 59 Elizabeth Tobin Tyler, Allies Not Adversaries: Teaching Collaboration to the Next Generation of Doctors and Lawyers to Address Social Inequality, 11 J. HEALTH CARE L. & POL’Y 249 (2008), http://docs.rwu.edu/ cgi/viewcontent.cgi?article=1000&context=law feinstein sp; see also Elizabeth Tobin Tyler, Aligning Public Health, Healthcare, Law & Policy: Medical-Legal Partnership as a Multilevel Response to the Social Determinants of Health, 8 J. HEALTH & BIOMED. L. 211 (2012), http://docs.rwu.edu/cgi/ viewcontent.cgi?article=1002&context=law feinstein sp. 60 Elizabeth Tobin Tyler et al., Bridging the Health and Legal Professions Through Education and Training, in POVERTY, HEALTH & LAW, supra note 3, at 97. 61 Id.; Sandel et al., supra note 24, at 1698. 62 McInturff & Harrington, supra note 1, at 5; see Devon S. Fletcher et al., Opportunities and Challenges for Palliative Care Professionals in the Age of Health Reform, 14 J. HOSPICE & PALLIATIVE NURSING 452, 452 (2012); America’s Affordable Health Choices Act, H.R. 3200, 111th Cong. § 1233 (2009).
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that led to fears about palliative care in general.63 This misperception played out in a particularly devastating way for the field of palliative medicine when funding for palliative medicine education and training was stripped from the PPACA.64 The MLP community struggles to combat perceptions by the public and the medical community regarding the role of attorneys in healthcare as being mostly focused on risk management and malpractice.65 While the growth of the MLP model has helped to diminish this perception, there is still much work to be done to educate healthcare team members and administrators of the role and value of civil legal aid professionals in addressing the social determinants of health. Separately, while it is clear that patients and families think that addressing legal and financial issues as part of comprehensive planning for the patient with serious illness is important, timely access to these services in a manner that is concordant with a medical plan is unattainable for most patients, given the paucity of legal resources for low-income people in general.66 IV. BLUEPRINTING PALLIATIVE CARE TO THE MLP While there is indisputable evidence that social determinants are the single largest factor in health outcomes, until the advent of the MLP, there has been a significant gap in the capacity of healthcare teams resources to address these complex socio-financial problems. With its holistic, contextual vision of patient care, the palliative medicine community is uniquely situated to raise awareness of the importance of integrating attorneys into the healthcare team because palliative medicine cannot be delivered effectively to patients in the midst of serious illness, especially those with low reserve, disease progression, and poor social and/or financial support, when there is no one to assist in caring for them, they have nowhere to live, they are experiencing job loss, their debt burden is mounting and/or they are in the midst of financial collapse, they have stressed families or no family, they are uninsured or under-insured, or they cannot afford to guidance on financial-legal planning. 63
Brendan Nyhan, Why the “Death Panel” Myth Wouldn’t Die: Misinformation in the Health Care Reform Debate, 8 FORUM 1, 8 (2010), http://www.dartmouth.edu/∼nyhan/health-care-misinformation.pdf; see Fletcher et al., supra note 61, at 452. 64 Fletcher et al., supra note 61, at 452. 65 See Public Perceptions of Lawyers Consumer Research Findings, A.B.A. 1 (2002), http://www. cliffordlaw.com/abaillinoisstatedelegate/publicperceptions1.pdf; Retkin et al., supra note 30; see also Stewart B. Fleishman et al., The Attorney as the Newest Member of the Cancer Treatment Team, 24 J. CLIN. ONCOLOGY 2123 (2006), http://jco.ascopubs.org/content/24/13/2123.full.pdf. 66 See Sara Rosenbaum et al., Who Cares for the Poor? Understanding the Healthcare and Legal Systems in the United States, in POVERTY, HEALTH & LAW, supra note 3, at 3; Legal Needs and Civil Justice: A Survey of Americans, A.B.A. (1994), http://www.americanbar.org/content/dam/aba/migrated/legalservices/ downloads/sclaid/legalneedstudy.authcheckdam.pdf.
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TABLE 2. Applying the Palliative Care Initiative to the Medical-Legal Partnership Model
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Certification
Guidelines for Practice Supportive Data
Leadership
Successful Palliative Care Initiatives that Have Led to Standards of Care Practitioner certification is validated by the field in mainstream medicine. National consensus guidelines were created based on outcomes, evidence, and expert opinion67 A national database68
Leadership centers that demonstrate best practices have been created.69
How Palliative Care Initiatives Can Be Applied to MLP Practice Validation of the MLP role through practitioner certification must be established. Consensus guidelines coalesce expert opinion and roadmap potential outcomes research. A national database helps individual MLP programs make the case to local funders. Mature MLP programs teach and serve as models for new programs.
Like palliative care, the strength of the MLP to affect positive change will rely on its ability to coalesce its relatively small workforce on a national scale through information sharing and combined expertise. A recent major accomplishment for the MLP movement is the formal, but unfunded, recognition of the MLP entity by the health laws of the State of New York. This first, critical step allows for established programs to gain recognition and legitimacy on a state level. Next steps could include the development of MLP certification for attorneys, and perhaps healthcare providers and other team members, through integrated healthcare fellowship training and the development of interprofessional curriculum. (See Table 2.) CONCLUSION: RAISING NATIONAL AWARENESS While a future goal is to launch a national awareness campaign to introduce the need for legal services into all cancer centers and palliative care programs, and to make the provision of these services to indigent patients the standard of care, it will need to march in tandem with intensive capacity building in the legal aid community to meet the overwhelming need. One
67
See Policies and Tools for Hospital Palliative Care Programs: A Crosswalk of National Quality Forum Preferred Practices, CTR. TO ADVANCE PALLIATIVE CARE 1, 75-76 (2007), http://www.capc.org/capcresources/capc publications/nqf-crosswalk.pdf. 68 National Palliative Care Registry for Data Year 2011, CTR. TO ADVANCE PALLIATIVE CARE, http://registry. capc.org/ (last visited Nov. 3, 2013). 69 See PCLC Overview, CTR. TO ADVANCE PALLIATIVE CARE, http://www.capc.org/palliative-care-leadershipinitiative/overview (last visited Nov. 3, 2013).
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of the major barriers to developing these partnerships is lack of sustainable funding. By providing evidence that demonstrates the ability of these partnerships to self-fund, we anticipate that awareness will increase demand for this type of integrated care for the oncology patient, as well as for all patients with serious illness, such as heart failure, emphysema, and dementia, and it also will allow physicians and hospital administrators, alike, to understand that these programs are a win-win solution for all involved. More outcomes research is needed to provide additional validation to these interventions and to change the standard of care for all patients facing both serious illness and health-related legal problems.
Journal of Legal Medicine Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/ulgm20
Blueprint for Success: Translating Innovations from the Field of Palliative Medicine to the Medical-Legal Partnership a
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Lynn Hallarman MD , Denise Snow JD , Manasi Kapoor , Carrie d
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Brown MD , Kerry Rodabaugh MD & Ellen Lawton JD a
Click for updates
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Stony Brook Medicine
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Stony Brook Medicine School of Nursing
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Advisory Board Company
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University of Arkansas for Medical Sciences
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University of Nebraska Medical Center
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Department of Health Policy , George Washington University Published online: 26 Mar 2014.
To cite this article: Lynn Hallarman MD , Denise Snow JD , Manasi Kapoor , Carrie Brown MD , Kerry Rodabaugh MD & Ellen Lawton JD (2014) Blueprint for Success: Translating Innovations from the Field of Palliative Medicine to the Medical-Legal Partnership, Journal of Legal Medicine, 35:1, 179-194, DOI: 10.1080/01947648.2014.885330 To link to this article: http://dx.doi.org/10.1080/01947648.2014.885330
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The Journal of Legal Medicine, 35:179–194 C 2014 American College of Legal Medicine Copyright 0194-7648 print / 1521-057X online DOI: 10.1080/01947648.2014.885330
BLUEPRINT FOR SUCCESS: TRANSLATING INNOVATIONS FROM THE FIELD OF PALLIATIVE MEDICINE TO THE MEDICAL-LEGAL PARTNERSHIP Lynn Hallarman, MD, Denise Snow, JD, Manasi Kapoor, Carrie Brown, MD, Kerry Rodabaugh, MD, and Ellen Lawton, JD*
INTRODUCTION Palliative medicine and medical-legal partnership (MLP) are two distinct healthcare delivery innovations that share common strategies, opportunities, and challenges. This article uses the framework of palliative medicine to offer insights and recommendations on how to move the MLP field forward, toward greater integration and sustainability. Palliative medicine is a medical sub-specialty whose focus is to relieve the symptoms, pain, and stress of a serious illness—whatever the diagnosis or prognosis.1 Palliative care is inherently interdisciplinary and requires expertise across a broad range of disciplines to meet the care demands of patients with high-intensity symptom management, complex personal-social-legalspiritual needs, family dynamics, and a multiplicity of issues surrounding goals of treatment.2 Palliative medicine can be integrated into the care of patients across a broad age range, from pediatrics to geriatrics, and can occur * Lynn
Hallarman is the Director of Palliative Medicine and Associate Professor of Internal Medicine at Stony Brook Medicine. Denise Snow is a Staff Attorney Nassau/Suffolk Law Services Committee, Inc., and a Clinical Associate Professor at Stony Brook Medicine School of Nursing. Manasi Kapoor is a Senior Analyst at the Advisory Board Company. Carrie Brown is an Assistant Professor at the University of Arkansas for Medical Sciences. Kerry Rodabaugh is an Associate Professor at the University of Nebraska Medical Center. Ellen Lawton is the Lead Research Scientist at the National Center for Medical-Legal Partnership, Department of Health Policy at George Washington University. Please address all correspondence to Dr. Hallarman at [email protected]. 1 Bill McInturff & Elizabeth Harrington, 2011 Public Opinion Research on Palliative Care, CTR. TO ADVANCE PALLIATIVE CARE (2011), http://www.capc.org/tools-for-palliative-care-programs/marketing/ public-opinion-research/2011-public-opinion-research-on-palliative-care.pdf. 2 Lynn Hallarman & Denise Snow, The Medical-Legal Partnership: An Alliance Between Doctors and Lawyers in the Care of Patient-Clients with Advanced Life-Limiting Illness, 17 N.Y. ST. BAR ASSN.
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while patients are receiving curative or disease-modifying treatments, such as chemotherapy. MLP integrates legal advocacy into the healthcare setting and addresses health-related legal problems that impact vulnerable patients and their families’ ability to cope with illness.3 MLP attorneys partner with the frontline healthcare team to resolve legal matters that have an impact on the patient’s health or are created or aggravated by the patient’s health issues.4 MLPs have broad applicability across populations, including children, the elderly, and those with chronic or life-threatening illness. MLPs can assist clinicians, both in the outpatient clinic and hospital settings, in identifying and addressing major sources of financial-legal-social anxieties surrounding legacy planning, guardianships/planning for minor children and disabled adult children, future planning documents, access to care, and next steps in care. The similarities and overlap between palliative care and the MLP are striking. Like the field of palliative medicine, MLP is fundamentally interdisciplinary. MLP relies on close collaboration between healthcare team members and outside legal professionals. Palliative care and MLP help integrate bedside healthcare against a backdrop of complex bureaucracies and systems that exacerbate care fragmentation, create patient and family stress, and promote both inadequate advance care planning and lagging referrals for essential benefits and services.5 Both fields are rooted in patient and family advocacy, with access to quality, comprehensive care for vulnerable patients as an overarching priority, and both fields have emerged from innovations that challenge traditional paradigms of healthcare delivery. This article examines the intersection between palliative medicine and MLP, as well as how the field of palliative medicine can inform the strategic growth of MLP as essential patient care and provide a roadmap for the future. I. THE EMERGENCE AND GROWTH OF PALLIATIVE CARE IN THE UNITED STATES The lessons learned from palliative care as it applies to MLP can first be examined by reviewing the history of palliative medicine. Palliative care HEALTH L.J. 44, 46 (2012); see Kerry J. Rodabaugh et al., A Medical-Legal Partnership as a Component of a Palliative Care Model, 13 J. PALLIATIVE MED. 13, 15-18 (2009), http://www.medical-legalpartnership. org/sites/default/files/page/MLP%20as%20a%20Component%20of%20a%20Palliative%20Care%20 Model.pdf. 3 Ellen Lawton et al., Medical-Legal Partnership: A New Standard of Care for Vulnerable Populations, in POVERTY, HEALTH & LAW: READINGS & CASES FROM MEDICAL-LEGAL PARTNERSHIP 74 (Elizabeth Tobin Tyler et al. eds., 2011). 4 Id. at 75; N.Y. ST. PUB. HEALTH L. A3304-A § 22 (2011); see M. Klein et al., Doctors and Lawyers Collaborating to HeLP Children—Outcomes from a Successful Partnership Between Professions, 24 J. HEALTHCARE POOR & UNDERSERVED 1063 (2013). 5 See NAT’L CTR. FOR MEDICAL-LEGAL PARTNERSHIP, http://www.medical-legalpartnership.org (last visited Oct. 29, 2013).
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developed initially as an outgrowth of the hospice movement first started in the 1960s in the United Kingdom with the pioneering work of Cecily Saunders.6 The hospice model grew from observations and case studies by Saunders and others documenting the bedside experience of the dying cancer patient. The subsequent interdisciplinary care approach fundamental to hospice care developed in response to perceived gaps in oncology care surrounding symptom management and the care of the family.7 As the hospice movement took hold in the United States in the 1970s, it resulted in the establishment of the Hospice Medicare Benefit in 1982, which, for the first time, provided a funding mechanism for the care of the terminally ill.8 The hospice Medicare model is based on the cancer death trajectory, which typically has a predictable period of functional debility in the months before death, and allows, based on the patient’s preferences, for the initiation of home hospice care that includes the treatment of symptoms, spiritual care, support for families, and bereavement.9 Hospice provides care for those in the last weeks or months of life. Patients must have a least two medical physicians certify a prognosis of less than six months to live. Life-prolonging treatments are discontinued because they have become ineffective or intolerable, and/or they are not the patient’s choice.10 The emergence of the field of palliative medicine throughout the 1980s and 1990s in the United States, as distinct from hospice care, initially occurred in response to research evidence showing that hospitalized patients, including those with heart and lung disease, dementia, and stroke, as well as cancer, often experience inadequate symptom management, poor communication with physicians, and unsustainable demands on family support systems.11 This led to the establishment of hospital-based palliative care teams that reached beyond cancer care to patients with less predictable prognoses and illness trajectories characterized by long periods of chronic illness punctuated by acute exacerbations. Underpinning the ongoing growth of palliative care programs in hospitals across the United States has been the unprecedented growth of our aging population, the members of which often have one or more non-cancer chronic illnesses, and the evolution of the cancer trajectory into a
6
David Clark, From Margins to Centre: A Review of the History of Palliative Care in Cancer, 8 LANCET ONCOLOGY 430, 430 (2007). 7 Id. at 434. 8 Memorandum from Stuart Wright, Deputy Inspector General for Evaluation and Inspections, Dep’t of Health & Human Servs. 3-4 (Sept. 4, 2009), http://oig.hhs.gov/oei/reports/oei-02-06-00223.pdf. The Tax Equity and Fiscal Responsibility Act of 1982 includes a Medicare hospice benefit, but it included a 1986 sunset provision. Id. In 1986, the Medicare Hospice Benefit was enacted, making the benefit permanent. Id. Under this Act, states are given the option of including hospice in their Medicaid programs—thereby making hospice care available to nursing home residents. Id. 9 See id. 10 Id. 11 See A Controlled Trial to Improve Care for Seriously Ill Hospitalized Patients: The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT), 274 JAMA 1591 (1995).
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multi-year, chronic disease.12 Non-hospice palliative care is appropriate at any point in a serious illness. It can be provided at the same time as life-prolonging treatment. The key difference in comparing palliative care to hospice is that palliative care has no prognostic requirement, no need to choose between treatment approaches.13 Patients with congestive heart failure or emphysema are typical examples of patients who often need palliative intervention during long periods of time to mitigate debilitating symptoms, such as breathlessness, fatigue, low appetite, or loss of function. Also, as chronic, serious illness progresses, patients and families become high risk for caregiver distress, triggering hospitalization, nursing home placement, and financial ruin. Integrating palliative care into the care of the seriously ill is a demonstrated strategy to improve clinical outcomes, reduce unnecessary emergency room and hospital utilization, and promote both advance care planning discussions and patient/family choice.14 In the 1990s, palliative care emerged as a distinct field of medicine with: the formation of national organizations, such as the American Academy of Hospice and Palliative Medicine; development of a national certification exam; and expansion of educational initiatives. At the same time, the Robert Wood Johnson Foundation established the Last Acts Institute and the Project on Death in America, with the goal of improving end-of-life care in the United States.15 The Robert Wood Johnson initiative, combined with sentinel reports from the Institute of Medicine and the National Institute of Health promoting palliative care, helped support leadership development and groundbreaking research that would come to fruition in the early 2000s.16 A key turning point for palliative care occurred in 2002, when the Veterans Administration (VA) embraced the national expansion of palliative care consultation teams in all VA facilities, making the VA the first healthcare system in the United States to formalize palliative care consultation on a systems level.17 In 2006, hospice and palliative medicine were formally recognized by the American Board of Medical Subspecialties (ABMS) and the Accreditation Council for Graduate
12
See Gerald F. Anderson, Medicare and Chronic Conditions, 353 NEW ENG. J. MED. 305 (2005). Diane E. Meier, Increased Access to Palliative Care and Hospice Services: Opportunities to Improve Value in Health Care, 89 MILBANK Q. 343, 346 (2011), http://www.capc.org/capcsearch/?submitsearch =false&search=prognostic+requirement. 14 See Frances M. Wu et al., Effects of Initiating Palliative Care Consultation in the Emergency Department on Inpatient Length of Stay, 16 J. PALLIATIVE MED. 1 (2013). 15 See Felicity Aulino & Kathleen Foley, The Project on Death in America, 94 J. ROYAL SOC’Y MED. 492 (2001); Lori De Milto, Assessment of Last Acts Program Provides Recommendations for Future Direction, ROBERT WOOD JOHNSON FOUND. (Oct. 2002), http://www.rwjf.org/en/research-publications/ find-rwjf-research/2002/10/assessment-of-last-acts-r–program-provides-recommendations-for-.html. 16 About HCFO, CHANGES IN HEALTH CARE FINANCING & ORGANIZATION, http://www.hcfo.org/about (last visited Oct. 27, 2013). 17 See Office of Public and Intergovernmental Affairs, VA Is Leader in Hospice and Palliative Care, U.S. DEP’T OF VETERAN AFF. (Jan. 8, 2008), http://www1.va.gov/opa/pressrel/pressrelease.cfm?id=1442. 13
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Medical Education (ACGME).18 This helped codify the presence of palliative medicine programs in academic medical centers and increase the workforce of palliative medicine specialists. Palliative care was literally redefined in 2010, when a landmark study demonstrated that integrating palliative care early into the care of patients with advanced lung cancer significantly extended survival, in addition to improving quality outcomes and decreasing death in intensive care settings.19 This study established that palliative care should be integrated early on with usual care and should be available on an outpatient basis.20 Another critical study, conducted in 2011, demonstrated that patients who received palliative care accrued significantly lower costs and experienced similar clinical outcomes as compared to a matched cohort of patients who received only usual care.21 These two sentinel studies have led to validation and greater acceptance of the burgeoning palliative care specialty. II. THE EMERGING FIELD OF MLP MLP integrates legal care directly into patient healthcare using three levels of legal intervention: (1) directly with the patient, (2) at the clinic level, and (3) through policy advocacy.22 The MLP goal is to prevent and/or resolve health-harming legal problems arising from the social determinants of health. The expertise of an attorney is applied to specific health-related legal problems that, otherwise, cannot be resolved without legal advocacy for patients and families without financial means to hire an attorney. For example, there are families living in poverty that are wrongfully denied food supports and educational benefits, necessary resources to meet their daily needs and promote health. There are children living in housing with mold or rodents, in clear violation of housing laws, whose physical environment is making them sick. And there are seniors denied long-term-care coverage to which they are entitled, whose lack of access to insurance prevents them from getting the medical care they need.23 Despite this vivid connection between health and law, and the fact that civil legal aid offices and healthcare institutions have long treated the same 18
ABMS Establishes New Subspecialty Certificate in Hospice and Palliative Medicine, AM. BD. MED. SPECIALTIES (Oct. 6, 2006), http://www.abms.org/News and Events/downloads/NewsubcertPalliativeMed. pdf. 19 Jennifer S. Temel et al., Early Palliative Care for Patients with Metastatic Non–Small-Cell Lung Cancer, 363 NEW ENG. J. MED. 733, 733 (2010). 20 Id. 21 Rolfe Sean Morrison et al., Cost Savings Associated with US Hospital Palliative Care Consultation Programs, 168 ARCH. INTERNAL MED. 1783, 1785 (2008). 22 Lawton et al., supra note 3, at 81. 23 Id.
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patient/clients, there had never been a coordinated effort by the health and legal professions to address health-related legal needs, or to understand that many legal problems are health problems—until the advent of MLPs. While the core of every MLP is the same—an existing healthcare institution and an existing legal institution coming together to integrate their services and address the health-related legal needs of vulnerable patients—the model is inherently flexible, and, therefore, able to respond to the local needs and resources of a particular community.24 As of 2013, nearly 300 hospitals and health centers in the United States had developed MLPs in a range of healthcare settings, including rural and urban community health centers, children’s hospitals, veterans’ medical centers, and specialty care.25 They address the needs of children, families, veterans, chronically ill individuals, and the elderly. Like palliative care, MLP emerged as an innovation in the field, and grew organically in response to perceived needs, local adaptation and promotion, and an increasing awareness by healthcare providers that unmet legal needs play a critical role in the health and well-being of vulnerable patients. The first MLP began in Boston Medical Center’s pediatrics department in 1993 when the first attorney was hired to help address the housing conditions—such as mold and rodent infestations—that were negatively impacting child health, especially for children with asthma.26 But there are many historical antecedents to MLP—examples where legal and health partners have come together over the years to address local issues related to the social determinants of health—like the provision of legal services in the care of HIV/AIDS patients in the 1980s.27 Dr. Jack Geiger, founder of the community health center model and a member of the National Medical-Legal Partnership Advisory Council, speaks eloquently of an even earlier example, hiring a attorney at the first community health center in Mississippi in the 1960s to handle discrimination and other legal issues that plagued the community.28 Emerging evidence demonstrates that patient-clients benefit substantially from the addition of legal expertise to the patient care team and from the elevation of the healthcare provider voice in policy decisions and regulations.29 24
Megan Sandel et al., Medical-Legal Partnerships: Transforming Primary Care by Addressing the Legal Needs of Vulnerable Populations, 29 HEALTH AFF. 1697, 1704 (2010), http://content.healthaffairs.org/ content/29/9/1697.full.pdf. 25 The Movement, NAT’L CTR. FOR MEDICAL-LEGAL PARTNERSHIP, http://www.medical-legalpartnership.org/ movement (last visited Nov. 2, 2013). 26 POVERTY, HEALTH & LAW, supra note 3, at 723. 27 Ellen Lawton, Medical Legal Partnerships: From Surgery to Prevention?, MGMT. INFO. EXCH. J. 37, 38 (2007), http://www.washingtonmlp.org/documents/439011Medical-Legal%20Partnerships%20%20From%20Surgery%20to%20Prevention.pdf. 28 Dr. Jack Geiger, Remarks at the 2013 National Medical-Legal Partnership Summit (Apr. 10, 2013) (on file with author). 29 See, e.g., Tishra Beeson et al., Making the Case for Medical-Legal Partnerships: A Review of the Evidence, NAT’L CTR. FOR MEDICAL-LEGAL PARTNERSHIP (2013), http://www.medical-legalpartnership.org/
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But the professions themselves benefit in significant ways, as well.30 On the healthcare side, MLP builds capacity to handle patient legal needs, allowing healthcare team members to work at the top of their professional abilities, rather than struggling to navigate complex government bureaucracies.31 Healthcare institutions benefit from a return on investment, in part, by helping control costs for especially high utilizers of healthcare resources.32 The civil legal aid community benefits from expanding its capacity to provide care and introducing the ability to prevent legal problems, rather than simply having to react to legal problems that plague vulnerable communities.33 III. MLP-PALLIATIVE CARE INTERSECTION The inherent challenges and similarities of the conceptual models of both palliative care and MLP intersect across three key domains: (1) practice, (2) cost and impact, and (3) workforce. (See Table 1.) A. Practice The heterogeneity in both the palliative care and MLP patient across age and diagnosis makes early patient identification as a preventive strategy an ongoing challenge and a target for progress. In the case of palliative care, despite the mounting evidence that early consultation is clearly associated with better quality-of-life outcomes and improvements in advance care planning, patients with serious illness typically come to the attention of palliative sites/default/files/page/Medical-Legal%20Partnership%20Literature%20Review%20–%20February% 202013.pdf; Mary M. O’Sullivan et al., Environmental Improvements Brought by the Legal Interventions in the Homes of Poorly Controlled Inner-City Adult Asthmatic Patients, 49 J. ASTHMA 911 (2012); Robert Pettignano et al., Medical-Legal Partnership: Impact on Patients with Sickle Cell Disease, 128 PEDIATRICS 1482 (2011), http://pediatrics.aappublications.org/content/128/6/e1482.full.pdf; Dana Weintraub et al., Pilot Study of MLP to Address Social and Legal Needs of Patients, 21 J. HEALTHCARE POOR & UNDERSERVED 157 (2010), http://www.medical-legalpartnership.org/sites/default/files/page/ Pilot%20Study%20of%20MLP%20to%20Address%20Social%20and%20Legal%20Needs%20of%20 Patients.pdf; Anne M. Ryan et al., Pilot Study of Impact of MLP on Patients Perceived Stress and Well-Being, 23 J. HEALTHCARE POOR & UNDERSERVED 1536 (2012). 30 See, e.g., JoNel Newman, Miami’s Medical-Legal Partnership: Preparing Lawyers and Physicians for Holistic Practice, 9 IND. HEALTH L. REV. 473 (2012); Randye Retkin et al., Lawyers and Doctors Working Together: A Formidable Team, 20 HEALTH LAWYER 33 (2007), http://hlaw. ucsd.edu/prospectivestudents/documents/TheHealthLawyerArticle.pdf; Ellen Cohen et al., MedicalLegal Partnership: Collaborating with Lawyers to Identify and Address Disparities, 25 J. GEN. INTERNAL MED. 136 (2010), http://www.medical-legalpartnership.org/sites/default/files/page/MedicalLegal%20Partnership%20-%20Collaborating%20with%20Lawyers(1).pdf; Robert Pettignano et al., The Health Law Partnership: Adding a Lawyer to Heath Care Team Reduces Costs and Improves Provider Satisfaction, 18 J. PUB. HEALTH MGMT. E1 (2012); Edward Paul et al., Medical-Legal Partnerships: Addressing Competency Needs Through Lawyers, 1 J. GRAD. MED. EDUC. 304 (2009). 31 See Paul et al., supra note 30. 32 See Rodabaugh et al., supra note 2; James A. Teufel et al., Rural Medical-Legal Partnership and Advocacy: A Three Year Follow-Up Study, 23 J. HEALTHCARE POOR & UNDERSERVED 705 (2012). 33 See Lawton, supra note 27.
186
Practice is inherently interdisciplinary and interprofessional.
Service typically targets highest utilizers of healthcare services. Outcomes and impact of the program is difficult to quantify. Insurers do not reimburse services, or reimbursements are insufficient for high-intensity intervention. Financial model proves potentially or demonstrable cost-savings. Healthcare team lacks basic training and education.
Heterogeneity of patients across age and diagnosis demands expertise for early identification. The intervention is frequently misunderstood.
√ (services unreimbursed)
√ √ (insufficient reimbursement)
OF
Medical-legal partnership teams include physicians, nurses, social workers, community-health workers, patient navigators, attorneys, and paralegals.
√
No training in identifying and managing health-related legal needs or basic advocacy.
MEDINA COUNTY (Aug. 24, 2011), http://www.hospiceofmedina.org/dynamic/files/
Palliative care teams include physicians, nurses, nutritionists, chaplains, and social workers.
Minimal training on symptom management and leading end-of-life planning conversations. √
√
√
Legal professionals in healthcare settings traditionally focus on risk management, not patient or family advocacy, and healthcare team members believe legal problems can be fully addressed by social work or case management staff. √
Palliative care is confused with hospice care, as confirmed by a recent study, which found that 70% of the public does not understand palliative care.34
√
√
√
√
Medical-Legal Partnership
Palliative Care
Release Findings of Public Opinions of Palliative Care, HOSPICE CARE Palliative%20Care%20in%20the%20News.pdf.
34Groups
Workforce
Cost and Impact
Practice
Domain
TABLE 1. Comparison of Domains of Practice, Impact, and Workforce of Palliative Care and Medical-Legal Partnership
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medicine providers in a state of crisis, in the hospital setting, and, often, in the advanced stages illness. Too often, discussions about goals of care are had only when treatment failure is obvious and, unfortunately, in the instance of the non-decisional patient. At this point, families of hospitalized palliative care patients are often exhausted and overwhelmed due to the strains of caregiving.35 Lack of advance care planning also can lead to late identification of palliative care patients with complex problems, for example, lack of long-term-care insurance coverage, resulting in prolonged hospitalizations and caregiver strain, precipitating collapse of family support; or personal financial issues (i.e., mounting unpaid debt and/or lack of insurance) that could have been resolved upstream in the decisional patient, with the appointment of an agent through a power of attorney. Without early intervention and access to proper legal and palliative care resources, such problems become, instead, the purview of the family, the hospital, and the court system. Similarly, people with chronic legal issues, such as housing instability or other potentially health-related legal and/or financial strains, including job or insurance loss, can manifest as medical crisis. For instance, when an eviction notice has been served to a chronically ill individual who is subsequently tipped into homelessness and medical deterioration, or when lack of insurance forces a late presentation of serious illness in the emergency room. The legal system is not structured to promote “preventive law,” especially for lowincome or otherwise vulnerable people, and taking steps to prevent a legal crisis in the setting of medical illness, such as the urgent need for designation of guardianship for minor children or attainment of Medicaid can be challenging, if not impossible.36 Moreover, the pervasive lack of legal resources means that the legal community is perennially administering “emergency” legal treatment and has not begun the conceptual or organizational process to shift resources upstream toward prevention.37 Palliative care continues to address the issue of earlier identification of palliative-appropriate patients through field advances, including emerging integrated system responses, such as electronic medical record triggers, and redefining timing of palliative consultation and evaluation.38 Operational metrics for hospital-based palliative care programs assist consult teams in defining patient populations and tracking specific patient outcomes, such as discharge 35
See generally Kenneth Covinsky et al., The Impact of Serious Illness on Patients’ Families: Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment, 272 JAMA 1839 (1994). See POVERTY, HEALTH & LAW, supra note 3, at 723. 37 Ellen M. Lawton, Integrating Healthcare and Legal Services to Optimise Health and Justice for Vulnerable Populations: The Global Opportunity, in II THE LAW OF THE FUTURE AND THE FUTURE OF LAW 78 (Sam Mueller et al. eds., 2012), http://www.fichl.org/fileadmin/fichl/documents/LOTFS/LOTFS 1 Web.pdf. 38 See David E. Weissman & Diane E. Meier, Identifying Patients in Need of a Palliative Care Assessment in the Hospital Setting: A Consensus Report from the Center to Advance Palliative Care, 14 J. PALLIATIVE MED. 1 (2011). 36
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destination, readmission rates, and successful symptom control to improve identification of patients most likely to benefit from a palliative intervention.39 On a national scale, the Center to Advance Palliative Care launched an educational campaign to help patients and families understand palliative care to promote patient self-advocacy and patient choice.40 On a legislative level, the State of New York codified patient and family rights to information about palliative care and access to palliative care consultation through amendment of Public Health Law 2997-C and D: The Palliative Care Information Act (PCIA)41 and the Palliative Care Access Act (PCAA).42 The PCIA, Public Health Law 2997-C, requires attending healthcare practitioners to offer terminally ill patients palliative care information and counseling, including information about prognosis, the range of options appropriate to the treatment, the risks and benefits associated with those options, and the patient’s “legal rights to comprehensive pain and symptom management.”43 The PCAA, Public Health Law 2997-D, requires healthcare providers, hospitals, and nursing homes to establish policies and procedures for providing access to information and counseling regarding appropriate palliative care options to patients with advanced, life-limiting conditions and illnesses or to those authorized to make medical decisions for them.44 It also requires hospitals and nursing homes to facilitate access to appropriate palliative care consultations and services, including pain management consultations and services, and referrals consistent with patient needs and preferences, when appropriate.45 B. Cost and Impact Both palliative care and MLPs serve patients with high-intensity, timeintensive needs. The typical new palliative consult can take 2.8 hours, often with the expectation for repeated, intensive family meetings, detailed documentation, and time-consuming interactions with primary referring teams.46 Legal advocacy through MLP also frequently requires time-intensive interventions. In some MLP settings, attorneys are called to the bedside for legal consultation with clients and their families, which may trigger lengthy legal
39
See David E. Weissman & Diane E. Meier, Operational Features for Hospital Palliative Care Programs: Consensus Recommendations, 11 J. PALLIATIVE MED. 1189 (2008). 40 Get Palliative Care, http://www.getpalliativecare.org/ (last visited Nov. 2, 2013). 41 Palliative Care Information Act, N.Y. STATE PUB. HEALTH LAW § 2997-c (2011). 42 Palliative Care Access Act, N.Y. STATE PUB. HEALTH LAW § 2997-d (2011). 43 Id. § 2997-c(d)(2). 44 Id. § 2997-d. 45 Id. 46 J. Cameron Muir et al., Integrating Palliative Care into the Outpatient, Private Practice Oncology Setting, 40 J. PAIN & SYMPTOM MGMT. 126, 132 (2010).
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interventions, including time in court, appeals, petitions, and the drafting of legal documents.47 The time intensity of both services is problematic, for different reasons. On the palliative care side, physician productivity is measured by volume and billing, and palliative care is a cost center for most institutions without associated revenue to pay the full cost of its provision.48 Palliative care is a billable physician service on governmental and private insurance plans and recognized as a standard of care by accrediting organizations, such as The Joint Commission.49 Nevertheless, like much of medical billing, the reimbursement rate does not sufficiently cover the time requirements needed to work with a patient and/or family.50 On the MLP side, there is no reimbursement or payment mechanism for legal professionals who are part of the healthcare team. This is unlike the case for social workers or nutritionists.51 One of the most powerful aspects of MLP, however, is the opportunity to leverage existing community legal resources in the healthcare setting, thereby facilitating a mechanism for direct legal advocacy by a legal expert and freeing the clinical team to actuate effective medical care plans.52 Nevertheless, it is not yet sustainable to integrate legal professionals into specialty services, like palliative care, without a funding stream that emanates from the healthcare entity, and the MLP has yet to be fully recognized for its positive effects on clinical outcomes by clinical providers, insurers, and other payers. Currently, financial support for MLPs varies, ranging from public funding to private philanthropy to healthcare institutional contributions. Palliative care outcomes research has been critical in making the case for expanded palliative care services in the area of care domains as such services affect the individual patient, as well as the impact, on the systems level, of palliative care intervention on utilization, length of stay, readmissions, patient-family satisfaction, hospital mortality, and cost savings. Palliative care has been identified as key to hospital reform because of its link both to lower utilization and improved outcomes. For instance, high costs in the last few
47
Medical-Legal Partnership Benefits Cancer Patients, NAT’L CTR. FOR MEDICAL-LEGAL PARTNERSHIP (Aug. 21, 2009), http://www.medical-legalpartnership.org/news/medical-legal-partnership-benefitscancer-patients. 48 Mark Kelley, Productivity Still Drives Compensation in High Performing Group Practices, HEALTH AFFAIRS BLOG (Dec. 20, 2010), http://healthaffairs.org/blog/2010/12/20/productivity-still-drivescompensation-in-high-performing-group-practices/. 49 See generally Rodabaugh et al., supra note 2. 50 Workgroup Report on Hospice Care, Palliative Care and End of Life Counseling, MD. OFFICE ATTY. GEN. (2010), http://www.oag.state.md.us/Healthpol/Hospice and Palliative Care Workgroup Report .pdf. 51 See generally Teufel et al., supra note 32. 52 See generally id.
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weeks of life are associated with poorer quality of death.53 Moreover, patients who speak with their physicians about their wishes and care preferences incur significantly lowers healthcare costs in the last week of life.54 The Patient Protection and Affordable Care Act (PPACA) is currently a potential opportunity for palliative care to qualify under a bundled payment strategy, and to promote sustainable and expanded interdisciplinary healthcare teams that, heretofore, have been funded almost exclusively through outside, unsustainable philanthropic and private funds.55 MLP is currently not a recognized service by health insurers and other payers. Payment models for sustainable MLP services, such as joint funding models by the hospital system and the legal agency, are on track to demonstrate high value for patients, providers, and hospitals and health centers—paving the way for transitioning to a billable service. A payment model similar to hospice care’s bundled payment, in which the agency receives a set dollar amount for each day the patient is enrolled in hospice, is another potential payment model for MLP. C. Workforce Palliative medicine and MLP also share the opportunity and challenges of building a twenty-first-century, interprofessional workforce that is equipped to address the complex needs of vulnerable patients and their families. As described above in section I, the palliative medicine field has made substantial advances toward improving the standard of care through the implementation of certification exams and associated curriculum for physicians and nurse practitioners, as well as the development of fellowship training for physicians and social workers.56 Targeted workforce development and training strategies for oncologists, geriatricians, critical care, and emergency medicine providers are aimed at increasing integrated primary palliative care.57 The Center to Advance Palliative Care has seeded a highly innovative national approach to workforce education through the collection and sharing of best practices; this effort has catalyzed program building on a national scale—particularly important for a field whose providers are often working 53
Baohui Zhang et al., Health Care Costs in the Last Week of Life: Associations with End of Life Conversations, 169 ARCH. INTERNAL MED. 480, 480 (2009). 54 Benjamin Chastek et al., Health Care Costs for Patients with Cancer at the End of Life, 8 J. ONCOLOGY PRACTICE 75s, 79s (2012). 55 Diane E. Miller, Increased Access to Palliative Care and Hospice Services: Opportunities to Improve Value in Health Care, 89 MILBANK Q. 343, 365-69 (2011), http://www.ncbi.nlm.nih.gov/pmc/ articles/PMC3214714/pdf/milq0089-0343.pdf; see also Center to Advance Palliative Care, http:// www.capc.org (last visited Oct. 29, 2013). 56 American Academy of Hospice and Palliative Medicine, http://www.aahpm.org (last visited Oct. 29, 2013). 57 See Eduardo Bruera, Conceptual Models for Integrating Palliative Care at Cancer Centers, 15 J. PALLIATIVE MED. 1261 (2012).
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in isolation as the only palliative care provider in an institution or, even, in a region.58 In the MLP field, both clinical and legal partners, alike, are in the earliest stages of understanding and developing appropriate mechanisms for workforce development and training. While there are a handful of flexible legal fellowship programs that have seeded MLPs, there are no certifications, clinical fellowships, consensus guidelines, or leadership mechanisms that would drive workforce capacity and training toward enhanced quality and growth.59 In MLP practice, both the legal and the healthcare partners require substantial interprofessional training.60 For attorneys, it should include knowledge and understanding of the complexities of the healthcare landscape from a clinical or patient view; a broad “primary care” orientation toward: legal issue areas, including health insurance, family law, public benefits, and housing; an understanding of how to triage legal issues for resolution with healthcare partners; and a comprehension of the role and importance of data collection and research.61 For healthcare team members who participate in MLP, it is crucial to be grounded in the basic dynamics of social determinants of health, and poverty and legal needs, alongside an understanding of the legal community, in general, and how best to partner with legal professionals and others to promote patient well-being. As with palliative care providers, solidifying the title, role, and skill set will help the legal partner become a regular and familiar referral resource for the medical team. Finally, both the palliative care and legal communities suffer as a result of public perception of their roles and activities, as well as misunderstanding by the medical community. Palliative care is frequently seen as synonymous with “end-of-life care”—a phrase that is vulnerable to misperceptions, particularly when associated with governmental oversight.62 In 2009, the requirement in the PPACA that physicians be reimbursed by Medicare once every five years if a Medicare beneficiary asks them for consultation on advanced care, “endof-life” planning considerations underwent massive distortions in the media 58
Dale Lupu, Estimate of Current Hospice and Palliative Medicine Physician Workforce Shortage, 40 J. PAIN & SYMPTOM MGMT. 899 (2010). 59 Elizabeth Tobin Tyler, Allies Not Adversaries: Teaching Collaboration to the Next Generation of Doctors and Lawyers to Address Social Inequality, 11 J. HEALTH CARE L. & POL’Y 249 (2008), http://docs.rwu.edu/ cgi/viewcontent.cgi?article=1000&context=law feinstein sp; see also Elizabeth Tobin Tyler, Aligning Public Health, Healthcare, Law & Policy: Medical-Legal Partnership as a Multilevel Response to the Social Determinants of Health, 8 J. HEALTH & BIOMED. L. 211 (2012), http://docs.rwu.edu/cgi/ viewcontent.cgi?article=1002&context=law feinstein sp. 60 Elizabeth Tobin Tyler et al., Bridging the Health and Legal Professions Through Education and Training, in POVERTY, HEALTH & LAW, supra note 3, at 97. 61 Id.; Sandel et al., supra note 24, at 1698. 62 McInturff & Harrington, supra note 1, at 5; see Devon S. Fletcher et al., Opportunities and Challenges for Palliative Care Professionals in the Age of Health Reform, 14 J. HOSPICE & PALLIATIVE NURSING 452, 452 (2012); America’s Affordable Health Choices Act, H.R. 3200, 111th Cong. § 1233 (2009).
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that led to fears about palliative care in general.63 This misperception played out in a particularly devastating way for the field of palliative medicine when funding for palliative medicine education and training was stripped from the PPACA.64 The MLP community struggles to combat perceptions by the public and the medical community regarding the role of attorneys in healthcare as being mostly focused on risk management and malpractice.65 While the growth of the MLP model has helped to diminish this perception, there is still much work to be done to educate healthcare team members and administrators of the role and value of civil legal aid professionals in addressing the social determinants of health. Separately, while it is clear that patients and families think that addressing legal and financial issues as part of comprehensive planning for the patient with serious illness is important, timely access to these services in a manner that is concordant with a medical plan is unattainable for most patients, given the paucity of legal resources for low-income people in general.66 IV. BLUEPRINTING PALLIATIVE CARE TO THE MLP While there is indisputable evidence that social determinants are the single largest factor in health outcomes, until the advent of the MLP, there has been a significant gap in the capacity of healthcare teams resources to address these complex socio-financial problems. With its holistic, contextual vision of patient care, the palliative medicine community is uniquely situated to raise awareness of the importance of integrating attorneys into the healthcare team because palliative medicine cannot be delivered effectively to patients in the midst of serious illness, especially those with low reserve, disease progression, and poor social and/or financial support, when there is no one to assist in caring for them, they have nowhere to live, they are experiencing job loss, their debt burden is mounting and/or they are in the midst of financial collapse, they have stressed families or no family, they are uninsured or under-insured, or they cannot afford to guidance on financial-legal planning. 63
Brendan Nyhan, Why the “Death Panel” Myth Wouldn’t Die: Misinformation in the Health Care Reform Debate, 8 FORUM 1, 8 (2010), http://www.dartmouth.edu/∼nyhan/health-care-misinformation.pdf; see Fletcher et al., supra note 61, at 452. 64 Fletcher et al., supra note 61, at 452. 65 See Public Perceptions of Lawyers Consumer Research Findings, A.B.A. 1 (2002), http://www. cliffordlaw.com/abaillinoisstatedelegate/publicperceptions1.pdf; Retkin et al., supra note 30; see also Stewart B. Fleishman et al., The Attorney as the Newest Member of the Cancer Treatment Team, 24 J. CLIN. ONCOLOGY 2123 (2006), http://jco.ascopubs.org/content/24/13/2123.full.pdf. 66 See Sara Rosenbaum et al., Who Cares for the Poor? Understanding the Healthcare and Legal Systems in the United States, in POVERTY, HEALTH & LAW, supra note 3, at 3; Legal Needs and Civil Justice: A Survey of Americans, A.B.A. (1994), http://www.americanbar.org/content/dam/aba/migrated/legalservices/ downloads/sclaid/legalneedstudy.authcheckdam.pdf.
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TABLE 2. Applying the Palliative Care Initiative to the Medical-Legal Partnership Model
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Certification
Guidelines for Practice Supportive Data
Leadership
Successful Palliative Care Initiatives that Have Led to Standards of Care Practitioner certification is validated by the field in mainstream medicine. National consensus guidelines were created based on outcomes, evidence, and expert opinion67 A national database68
Leadership centers that demonstrate best practices have been created.69
How Palliative Care Initiatives Can Be Applied to MLP Practice Validation of the MLP role through practitioner certification must be established. Consensus guidelines coalesce expert opinion and roadmap potential outcomes research. A national database helps individual MLP programs make the case to local funders. Mature MLP programs teach and serve as models for new programs.
Like palliative care, the strength of the MLP to affect positive change will rely on its ability to coalesce its relatively small workforce on a national scale through information sharing and combined expertise. A recent major accomplishment for the MLP movement is the formal, but unfunded, recognition of the MLP entity by the health laws of the State of New York. This first, critical step allows for established programs to gain recognition and legitimacy on a state level. Next steps could include the development of MLP certification for attorneys, and perhaps healthcare providers and other team members, through integrated healthcare fellowship training and the development of interprofessional curriculum. (See Table 2.) CONCLUSION: RAISING NATIONAL AWARENESS While a future goal is to launch a national awareness campaign to introduce the need for legal services into all cancer centers and palliative care programs, and to make the provision of these services to indigent patients the standard of care, it will need to march in tandem with intensive capacity building in the legal aid community to meet the overwhelming need. One
67
See Policies and Tools for Hospital Palliative Care Programs: A Crosswalk of National Quality Forum Preferred Practices, CTR. TO ADVANCE PALLIATIVE CARE 1, 75-76 (2007), http://www.capc.org/capcresources/capc publications/nqf-crosswalk.pdf. 68 National Palliative Care Registry for Data Year 2011, CTR. TO ADVANCE PALLIATIVE CARE, http://registry. capc.org/ (last visited Nov. 3, 2013). 69 See PCLC Overview, CTR. TO ADVANCE PALLIATIVE CARE, http://www.capc.org/palliative-care-leadershipinitiative/overview (last visited Nov. 3, 2013).
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of the major barriers to developing these partnerships is lack of sustainable funding. By providing evidence that demonstrates the ability of these partnerships to self-fund, we anticipate that awareness will increase demand for this type of integrated care for the oncology patient, as well as for all patients with serious illness, such as heart failure, emphysema, and dementia, and it also will allow physicians and hospital administrators, alike, to understand that these programs are a win-win solution for all involved. More outcomes research is needed to provide additional validation to these interventions and to change the standard of care for all patients facing both serious illness and health-related legal problems.
