Palliative Care: Challenges for an Emerging Discipline

1. Palliative Care: Challenges for an Emerging Discipline Russell K. Portenoy, MD Chairman and Gerald J. and Dorothy R. Friedman Chair in Pain Medicine and Palliative Care Department of Pain Medicine and Palliative Care Beth Israel Medical Center Chief Medical Officer Continuum Hospice Care Professor of Neurology and Anesthesiology Albert Einstein College of Medicine

2. Palliative Care: Challenges for an Emerging Discipline • Current landscape • Challenges • For the subspecialty • For hospital-based palliative care • For hospice

3. Quality-of-Life Concerns in Cancer Populations • High prevalence of poorly controlled symptoms • High prevalence of psychological distress • High caregiver burden and financial stress • Disparities in access and outcomes • Health care systems skewed for treatment and acute medical management

4. End-of-Life Care: Illustrative Outcome Data • Study: Telephone survey of family members representing 1578 decedents • Results: • About 1/4 reported concerns with physician communication • About 1/4 with pain or dyspnea did not receive adequate treatment • Insufficient emotional support reported by 1/3 of those cared for by a home health agency, nursing home, or hospital, and 1/5 receiving home hospice • “Treated with respect”: nursing homes 68.2%, hospitals 79.6%, Home hospice 96.2% • Family satisfaction “excellent”: 50% of those in institutions, 70.7% receiving hospice Teno et al, JAMA, 2004

5. Intensity and Cost of Treatment for Advanced Cancer: US Trends • Study: Analysis of 1993-1996 Medicare claims data from 28,777 patients who died within 1 year of a diagnosis of lung, breast, colorectal, or other gastrointestinal cancer • Results: • Chemo within 2 weeks of death increased from 13.8% in 1993 to 18.5% in 1996 (P <.001) • There were small but significant increases in ED visits, hospitalizations, and ICU admissions in the last month of life • Very short hospice admissions (3 days or less) increased from 14.3% to 17.0% (P =.004) Earle et al, JCO, 2004

6. Variation in Quality of Care for Advanced Illness • Study: Analysis of Medicare claims data during the last 6 months of lifefor patients admitted to one of the 77 hospitals on the 2001 US News and World Report "best hospitals" list • Results: • Percentage of deaths occurring in hospital ranged from 15.9% to 55.6% (interquartile range 35.4-43.1%) • Hospice enrollment ranged from 10.8% to 43.8% (22.0-32.0%) • Days in hospital: from 9.4 to 27.1 (11.6-16.1) • Days in ICU: from 1.6 to 9.5 (2.6-4.5) • # MD visits: from 17.6 to 76.2 (25.5-39.5) • % patients seeing >10 MDs: from 16.9% to 58.5% (29.4-43.4%) • % deaths in ICU: from 8.4% to 36.8% (20.2-27.1%) Wennberg JE et al, BMJ, 2004

7. Part of the Solution: Palliative Care • NQF National Framework and Preferred Practices for Palliative and Hospice Care (adopted May 17, 2006) • "Palliative care means patient and family-centered that optimizes quality of life by anticipating, preventing, and treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social, and spiritual needs to facilitate patient autonomy, access to information and choice.“ • Consensus guidelines, viz., National Consensus Project (www.nationalconsensusproject.org)

8. Part of the Solution: Palliative Care • National Cancer Institute definition • “palliative care (PA-lee-uh-tiv...)Care given to improve the quality of life of patients who have a serious or life-threatening disease. The goal of palliative care is to prevent or treat as early as possible the symptoms of the disease, side effects caused by treatment of the disease, and psychological, social, and spiritual problems related to the disease or its treatment. Also called comfort care, supportive care, and symptom management.” • Some define “supportive care” in terms specific to treatment-related effects

9. Part of the Solution: Palliative Care • Best considered a therapeutic model • Interdisciplinary • Targeted to all types of ‘serious or life-threatening illness’ • Relevant throughout the course of the disease • Unit of care is patient and family • Emphasizes comprehensive and continuous care

10. Part of the Solution: Palliative Care • Goal of palliative care • To prevent and manage suffering, and to maintain quality of life, of patients with serious or life-threatening illness, and their families, by reducing the burden of illness and promoting adaptation and coping throughout the course of the disease

11. Part of the Solution: Palliative Care • Domains of Quality (www.nationalconsensusproject.org) 1. Structure and Processes of Care 2. Physical Aspects of Care 3. Psychological and Psychiatric Aspects of Care 4. Social Aspects of Care 5. Spiritual, Religious and Existential Aspects of Care 6. Cultural Aspects of Care 7. Care of the Imminently Dying Patient 8. Ethical and Legal Aspects of Care

12. Palliative Care: Key Elements • Objectives • Ongoing communication to support shared decision making and advance care planning with due regard for culture, religion, and other sources of variation • Comfort through expert symptom control • Management of psychosocial and spiritual needs

13. Palliative Care: Key Elements • Objectives • Availability of practical help in the home • Management of complex problems associated with far advanced illness andactive dying • Support for family while caregiving and when bereaved

14. Palliative Care • Key concept • Palliative care should be considered a best practice during routine cancercare, and • Palliative care should beavailable at a specialist-level for patients and families in need of an interdisciplinary approach involving a high level of expertise in multiple domains

15. Specialist-Level Palliative Care in the U.S. • In 2006, “Hospice and Palliative Medicine” accepted by the American Board of Medical Specialties as a subspecialty in • Internal Medicine • Family Medicine • Neurology and Psychiatry • Anesthesiology • Pediatrics • Surgery • Emergency Medicine • Physical Medicine and Rehabilitation • Obstetrics and Gynecology • Radiology

16. Specialist-Level Palliative Care in the U.S. • In 2006,“Hospice and Palliative Medicine” accepted by the Accreditation Council on Graduate Medical Education • One year Fellowship • Program requirements accepted • Family Medicine RRC will review all applications • Pre-review by a new Committee on Hospice and Palliative Care • First cycle review early in 2009 • Approximately 60 programs applied and accreditation will be retroactive to July, 2008

17. Systems to Deliver Palliative Care • In the U.S., improved access to specialist-level palliative care requires • Access to professionals with specialist-level competencies • Access to systems that support specialist care • Institution-based palliative care programs can deliver specialist care in hospitals and NH’s • Hospice can deliver specialist-level palliative care at EOL

18. Access to Specialists: Challenges • Workforce issues • All disciplines affected • For physicians • For nurses • For social workers • For pastoral care providers • Concerns • Limited number • Inadequate training • Regional maldistribution

19. Physician Workforce Issues • Currently too few specialists • Most care in specialist programs delivered by physicians with limited training • Fragile support for growth of the workforce

20. Physician Workforce Issues • Issues in certification and accreditation • Certification of specialists • Experiential track only till 2013 • After 2013, certification possible only after one-year training in an ACGME-accredited Fellowship • No identified mid-career strategy for those who cannot take a Fellowship • Pediatrics dilemma

21. Physician Workforce Issues • Issues in certification and accreditation • Number of Fellowship slots • Limited by national and institutional training caps and by half-salary support for Fellowships • Rules may limit academic hospices as primary training sites • With uncertain funding, limited number of clinician-educators, and uncertain future demand, the number of Fellowships may remain small and those created will have few slots

22. Access to Specialists: Challenges • Nursing issues • Certification available but overall shortage of nurses and few specialists • State-to-state variation in APN status • Few training opportunities

23. Access to Specialists: Challenges • Social work issues • No identified subspecialty • Tension in job role • Few training opportunities • Pastoral care issues • No identified subspecialty • Few training opportunities

24. Access to Systems: Hospital-Based Palliative Care • The good news: foundations for growth • National Quality Forum Framework accepted • Joint Commission interested • Best practice defined by consensus (www.nationalconsensusproject.org ) • Technical assistance available (www.capc.org)

25. Access to Systems: Hospital-Based Palliative Care • The good news: foundations for growth • Clear evidence of a growing recognition of unmet need and quality imperative • 96% increase in the number of hospital-based programs between 2000 and 2006 (American Hospital Association) • Emerging literature on cost savings

26. Access to Systems: Cost Reduction Before Referral In Palliative Care Unit Smith TJ et al. J Pall Med 2003;6(5):699-705. Charts courtesy of J Brian Cassel, PhD, Massey Cancer Center, Virginia Commonwealth University Smith et al. J Pal Med 2003

27. Access to Systems: Cost Reduction • Findings of a national program that funded 22 demonstration projects providing palliative care services in diverse settings • Costs of health care in the last 6 to 12 months of life remained high, but no higher than customary care and commensurate with the complex needs of patients Byock I et al. J Palliat Med. 2006;9(1):137-51.

28. Access to Systems: Cost Reduction • Largest study • Data from 8 hospitals 2002- 2004 • Cost savings for those discharged alive • $1696 per admission (P = .004) • $279 per day (P < .001) • Cost savings for those who died • $4908 per admission (P = .003) • $374 per day (P < .001) Morrison et al, Arch Int Med, 2008

29. Access to Systems: Hospital-Based Palliative Care • The bad news: challenges to growth • Large geographical variation in programs suggest quality and economic barriers • State-by-State report card (J Palliat Med, 2008) • U.S. overall: Prevalence of palliative care programs across states varies from 10% to 100% • California and New York, like the U.S. overall, gets a ‘C’ = 41-60% of hospitals >50 beds have a palliative care program

30. County-by-County Palliative Care Programs: California No programs 127 programs in 225 hospitals statewide Los Angeles County= 33 programs San Bernardino = 4 programs

31. Access to Systems: Hospital-Based Palliative Care • The bad news: challenges to growth • Most of interdisciplinary team cannot generate reimbursement for services and the business plan for palliative care services relies on cost reductions that may or may not materialize or be easily measured

32. Access to Systems: Hospital-Based Palliative Care • The bad news: many programs struggle with quality concerns • Largely address inpatient issues and institutional deaths • Limited continuity of care • Ambulatory and home care models not yet developed or widely available • Many with poor linkages to hospice, NHs, home care • Many programs miss key elements of an IDT • Perceived to lack focus on the psychosocial and the spiritual, and family issues

33. Access to Systems: Hospital-Based Palliative Care • The bad news: challenges to growth • In some institutions, competition among departments, division, or services

34. Challenge for Hospice: Open Access • Hospice is a capitated managed care benefit available as an entitlement under Medicare and Medicaid • To survive financially, most hospices limit enrolment and limit care • Open Access is being explored as a means to expand the availability of hospice services

35. Open Access: Definition • Hospice eligibility is determined solely by the specific requirements in the federal regulations, and not by the intended plan of care

36. Open Access: Eligibility • Eligibility: Summary of Regulations (42CFR418.20): • Patient must be Medicare-eligible and patient or representative must agree to that Part A benefits will be turned over to the hospice. • Physician must certify that life expectancy is <6 months if the disease runs its normal course. • Patient or representative must acknowledge that the treatment of the disease will be palliative and not curative.

37. Open Access: Eligibility • Eligibility: Summary • Definition of “curative” has not been stipulated • Clearly means “a treatment that has a reasonable likelihood of cure.” • Probably means “a treatment that has a reasonable likelihood of prolonging survival beyond 6 months.” • Never intended to mean “a treatment that is disease-modifying, or capable of yielding relatively brief added survival.”

38. Open Access: Broad Goals • Under a pure Open Access model • Hospice patients may receive ANY treatment unless it is likely to extend prognosis beyond 6 months • Hospice provides added services and requires that the patient give up nothing • Hospice should be seen as a program of services and not a philosophy about dying

39. Pure Open Access: Implications • Benefits of hospice to patients and families may be better realized • Benefits of the hospice to hospitals may be better realized • Benefits to the hospice may be realized

40. Pure Open Access: Implications • But risks to the hospice • Overwhelming increase in patient cost associated with requirement to pay for all treatments related to the terminal illness • Care provided by hospice staff may be outside of scope of practice • Staff may become distracted by needs of the acutely ill and not provide same level of care to the imminently dying

41. Open Access: Implementation Issues • Hypothesis: Cost of pure Open Access should be possible, at least for larger hospices • If risk pool can be optimized • If care can be managed like other managed care organizations

42. Open Access: Implementation Issues OPEN ACCESS Managing the Risk Pool Real Time Financial Data Complex Case Management

43. Open Access: Implementation Issues • Case study: Continuum Hospice Care • Formal policy and procedure was developed • Teams were in-serviced • Procedure was piloted • Forms for data collection developed for EMR • Informational items for staff

44. Open Access: Implementation Issues • Case study: Outcomes • Unsustainable costs given changes in oncology practice • Oncologist confusion • Admissions Team confusion • Scope of practice concerns • Continuum Hospice Care and other hospices are re-thinking viability of “pure” Open Access model • Change in payor system will be needed to improve access

45. Specialist-Level Palliative Care • What needs to happen? • Support the growth of institution-based palliative care programs based on well-defined guidelines and a sustainable business model • Expand access to hospice while enhancing hospice quality through payor policy changes • Meet needs for workforce expansion through programs for mid-career shift and Fellowship training

46. Specialist-Level Palliative Care • What needs to happen? • Create meaningful bridges between palliative care programs and hospice

47. Hospice and Palliative Care: Current Situation Palliative Care Programs Hospice Upstream Programs Bridge Programs Few Specialists in Hospice and Palliative Medicine

48. Palliative Care: The Future of the Specialty Palliative Care Programs Hospice Staffing, Policies and Procedures, Bridge Programs Specialists in Hospice and Palliative Medicine