The Palliative Care Medical-Legal Partnership (PC-MLP)

1. The Palliative Care Medical-Legal Partnership (PC-MLP) Tuesday, February 5, 2013 Audio Conference 1:30 – 2:30 PM EDT Denise Snow, JD, RN, CNM Staff Attorney, Permanency Legal Assistance Needs Project (PLAN) Nassau/Suffolk Law Services Committee, Inc. Clinical Associate Professor, School of Nursing Stony Brook University Stony Brook, NY Email: denise_snow@notes2.nursing.sunysb.edu Lynn Hallarman, MD Director of Palliative Medicine Stony Brook University Hospital Stony Brook, NY Email: lynn.hallarman@stonybrookmedicine.edu

2. DISCLOSURE Lynn Hallarman and Denise Snow have disclosed no relevant financial relationships.

3. Objectives • Define a Medical-Legal Partnership (MLP) • Identify Triggers for Medical-Legal Consultation • Recognize Individuals and Families with Medical-Legal Suffering • Develop an MLP in your Community

4. What is a Medical-Legal Partnership? “A collaboration between health care and legal service providers to assist patients and their families, without charge in resolving legal matters created or aggravated bythe patient’s health.” Summary definition from NY State Public Health Law Section 22, 2011

5. What is a Medical-Legal Partnership? MLPs assist patients with medical-legal issues in need of rapid resolution who cannot afford legal counsel or whose situation is exigent

6. MLP Essentials

7. Anna is a 21 yr. old single mother w/ malignant melanoma + lung mets.She is a full time college student and lives with her parents and 3 yr. old daughter. She is estranged from the father of her child and is overwhelmed with anxieties about her cancer, and caring for her daughter. She suffers from fatigue and body aches.  Anna has had ongoing problems with her insurance. Her oncologist is hoping to prolong Anna’s life (maybe two years) with oral anti-cancer treatment.  Anna’s Story… Part 1 Anjuli & Anna

8. History of the MLP • First formalized partnership was founded in 1993 at Boston Medical Center for children’s advocacy by Barry Zuckerman MD, Gary Bellow, JD and Jeanne Charn, JD • National Medical-Legal Partnership founded in 2009: www.medical-legalpartnership.org

9. The Medical-Legal Partnership Model Nationally Endorsed by: American Bar Association American Medical Association American Academy of Pediatrics Numerous other national organizations To Date: More than 97 MLPs nationwide partnered in 275 hospitals and health centers to provide legal assistance to more than 54,000 individuals and families serving children, the elderly, veterans and patients with chronic illnesses. MLPs cooperated in 23 medical schools and 29 law schools, legal services organizations and hundreds of private law firms and other pro bono partners providing $13 million in services.

10. New NY State Legislation on Health-Related Legal Services: First in the Nation! January 2011 N.Y. State passed: “Health-Related Legal Services Program” (Public Health Law A3304-A Sec 22) Key aspects: • Support growth of MLPs • Pro-bono model linked to a clinical setting • Address structural-system issues that worsen health care disparity in vulnerable persons

11. Screening For and Responding to Distress… Clinicians can ask patients: “Are there any financial or legal concerns you have that are affecting your ability to cope with your illness or affecting you or your family?”

12. Identifying Patients/Families at Higher Risk for Financial/Legal Distress/Suffering: • Finances: Uninsured, sole wage earner, • pursuing benefits/statuses, employment • status,discrimination • Dependents: single parent, minor children, • domestic partnership where survivor has • no guardianship, disabled children of any age • Family: Unmarried couples, food and energy • insecurity, poor environmental • or housing conditions, domestic violence • Legal Status:immigrant status, history of tax evasion, in divorce proceedings, other legal problems Does the patient have a serious illness? …And issues with:

13. Not Only the Underserved Should Be Screened! Identifying the ‘sick poor’ All patients with advanced or terminal illness should be screened for “red flag” signs of health related legal distress

14. Anna’s Story… Part 2 Anna was referred for palliative care consultation to assist with her symptom management and help her to cope with the difficulties (and sorrows) of incurable fatal cancer. Anna does not want to talk about her prognosis but is willing to meet with the PCT including a social worker to discuss a strategy for symptom management and dealing with her insurance issues/ limited financial resources. The Palliative Care MD and Social Worker meet with the patient over a series of visits including one visit with her parents. A Health Care Proxy is done, her severe fatigue addressed, and immediate health insurance issues are resolved. Anna

15. The Nature of Suffering… “The state of severe distress associated with events that threaten the intactness of the person.” - Cassell

16. The Death Spiral and the “Sick Poor” Advanced Life-limiting Illness Complex Disease Directed Therapy such as Chemo/Radiation Progressive Functional Decline/Loss of Reserve S U F F E R I N G Prolonged Sick Leave, Inability to Work Insurance Loss/JOB LOSS/Mounting Debt Food, Housing, Energy Insecurity Family Decompensation Crisis Hospitalizations Death Social Isolation/Inability to Self-Advocate

17. Medical-Legal Suffering? A Proposed Definition: The stripping of personhood by the inability to resolve legal problems created or aggravated by advanced or disabling illness

18. Compounding The Bed-Side Drama: When critical conversations about prognosis are avoided… Next step planning/ shoring up of resources…

19. MLPs: Breaking the Cycle of Unmet Needs For Patients with Serious Illness

20. Breaking the Cycle of Unmet Need…Legal Consultation as Part of the Treatment Plan • We can appeal a denial or decision - “no” may not mean “no”. • We know the rules! • We can go to court or hearing • We can help with future planning

21. MLP Consultation Process for Hospitalized Patients with Advanced Illness and Exigent Legal Needs

22. Anna’s Story… Part 3 3months later, Anna is sent to the ED for headache, vomiting, inability to speak and right-sided weakness. She is found to have isolated brain metastases. She undergoes an urgent surgery for resection of the brain mass. The inpatient palliative care team evaluates her for symptom management and support. Her 2 month hospitalization is characterized by severe pain, nausea, lack of appetite, depression and highly anxious parents. Attempts at further anti-cancer treatment are made. Anna, however, remains weak and with diminished coping.

23. History of Stony Brook University Palliative Care MLP

24. Critical Outcomes: Stony Brook PC-MLP • Establishment of a dozen guardianships for minor children: • avoiding foster care placement • Planning for several disabled adult children: • assuring continuity of care • Obtained income benefits (SSI/SSDI) for numerous patients: • preventing financial disasters • Obtained health insurance benefits for patients: • avoiding crushing medical debt • Assisted patients in obtaining power of attorney: • preventing lengthy guardianship actions • Allowing for appropriate placement/transfers: • decreasing length of hospital stay • Executed numerous bedside wills: • creating peace of mind

25. Types of Legal Problems Addressed by Stony Brook Medical Center & Nassau/Suffolk Law Services

26. Starting an MLP

27. Starting an MLP….. National Center for Medical-Legal Partnership www.medical-legalpartnership.org“Resources for Emerging Partnerships”

28. First Steps: Form a strategic planning group for your MLP • identify medical & legal champions • Check for Legal Services Corporations (LSC) in your area Is there an existing MLP in your area? • Check the MLP site map on the national website Contact your state bar association or local law school • www.medlegalprobono.org Assess funding opportunities: • legal funding/state grants/foundational support

29. The MLP as an Educational Resource Basic legal training for health care providers to help them screen and refer patients who may benefit from legal assistance Combined curriculums for medical students and lawyers

30. Anna’s Story… Part 4 During this hospitalization, Anna reveals her extreme worries to the PCT about her daughter’s future and her fears that the father of the child will attempt to take the child. PCT/social worker contact the MLP legal advocate with the permission of the patient. The advocate comes same day to the bedside and counsels, pro-bono, Anna and her parents on the process of guardianship, and papers are signed giving temporary guardianship to Anna’s parents. Anjuli

31. In May 2008, Anna continues to deteriorate. She expresses to her care team the “deep relief” she feels knowing that Anjuliwill be safe with her parents. Anna dies a week later. The MLP Laywer continues to work with Anna’s parents to obtain permanent guardianship. In 2011, Anna’s daughter at age 7 lives with her grandparents.

32. Resources • National Center for Medical-Legal Partnership www.medical-legalpartnership.org (“Resources for Emerging Partnerships”) • The American Bar Association Medical Legal Pro Bono Project www.medlegalprobono.org • New York State Department of Health: Rules, Regulations & Laws www.health.ny.gov • The Legal Services Corporation (LSC), a federally funded organization enacted by US Congress with the mission to provide high-quality civil legal advocacy to low income individuals. The LSC provides a list of all of legal advocates in all fifty states by county and/or region. http://www.lsc.gov • The state bar association or county bar association in your region. Many bar associations support a formal pro bono program. http://www.americanbar.org/groups/bar_services/resources/state_local_bar_associations.html

33. References • Hallarman L., Snow D., The Medical Legal Partnership: An Alliance Between Doctors and Lawyers in the Care of Patient-Clients with Advanced Life-limiting Illness. NYSBA Health Law Journal Winter Edition 2012,Vol 17, No. 1 • Hallarman, L., Snow, D., The Medical-Legal Partnership: Medical-Legal Suffering for Patients with Advanced Illness, Fast Fact #245, Journal of Palliative Medicine Volume 15, Number 1, 2012 • Rodabaugh K, Hammond M, Myszka D, Sandel A. A Medical-Legal Partnership as a component of a palliative care model. (2010) Journal of Palliative Medicine; 13(1): 15-19 • Zuckerman B, Sandel M, Lawton E, Morton S, Medical-legal Partnerships: transforming health care. (2008) Lancet:372;1615-7 • Paul E, Fullerton DF, Cohen E, Lawton, Ryan A, Sandel M, Medical-Legal Partnerships: Addressing Competency Needs Through Lawyers. Journal of Graduate Medical Education, (2009) Dec, pp. 304-308 • Fleishman, SB., Retkin R., Brandfield J., Braun V. (2006) The Attorney as the Newest Member of the Cancer Treatment Team, Journal of Clinical Oncology, Vol. 24. No 13, May, pp. 2123-2126 • Cassell, EJ. The Nature of Suffering. (1982) New England Journal of Medicine March 18;306(11):pp. 639-45

34. Question & Answer Period ABOUT CAPC The Center to Advance Palliative Care (CAPC) provides health care professionals with the tools, training and technical assistance necessary to start and sustain successful palliative care programs in hospitals and other health care settings. CAPC is a national organization dedicated to increasing the availability of quality palliative care services for people facing serious illness. Thank you for joining us today!

35. Continue the Discussion on CAPCconnectTM Forum! At the conclusion of this audio conference, we welcome you to continue the discussion with your peers and faculty on CAPCconnectTM Forum! Go to: http://www.capc.org/forums to post your message and comments within the “General Operational Topics” discussion topic!