Foundations of Palliative Care J. Cameron Muir, MD, FAAHPM EVP, Quality and Access, Capital Caring Clinical Scholar, Georgetown Center for Bioethics Assistant Clinical Professor, Johns Hopkins Oncology Past President, Am. Academy of Hospice and Palliative Medicine J. Cameron Muir, MD, FAAHPM EVP, Quality and Access, Capital Caring Clinical Scholar, Georgetown Center for Bioethics Assistant Clinical Professor, Johns Hopkins Oncology Past President, Am. Academy of Hospice and Palliative Medicine

Presentation Outline: National Framework(s) Hospice AND Palliative Care – Unique Solutions Quality Outcomes Care Transitions across the Continuum Positive Impact on Bottom Line 2

ASCO - 1 Cancer Care During the Last Phase of Life JCO 5: , 1998 Longstanding & continuous relationship – training and interest in end-of-life care Responsive to patient’s wishes Truthful, sensitive, empathic communication with patient and family Optimizes QOL throughout the course of the illness

ASCO - 2 Palliative Cancer Care a Decade Later: Accomplishments, the Need, Next Steps JCO 27: , 2009 Changes are needed in current policy, drug availability, education, quality improvement, and research for integration of PC throughout the experience of cancer The need for palliative cancer care is greater than ever Vision: PC integrated into CCC by 2020

National Priorities Partnership Convened by the National Quality Forum (NQF) Engage patients and families in managing their health and making decisions about their care Improve the health of the population Improve the safety and reliability of America’s healthcare system Ensure patients receive well-coordinated care within and across all healthcare organizations, settings, and levels of care Guarantee appropriate and compassionate care for patients with life-limiting illnesses Eliminate overuse while ensuring the delivery of appropriate care 5

6 NQF Framework for Quality Palliative Care Eight Domains 1. Structure and Process 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

NQF: Core Elements of Palliative Care Debilitating chronic or life-threatening illness, condition or injury Patient- and family-centered care Begins at the time of diagnosis of a life-threatening or debilitating condition Comprehensive care Interdisciplinary team Attention to relief of suffering Communication skills Skill in care of the dying and the bereaved Continuity of care across settings 7

ASCO - 3 ASCO Statement: Toward Individualized Care for Patients with Advanced Cancer JCO 28:1-6, 2011 Individualized approach to discussing and providing disease-directed and supportive care throughout the continuum of care Discussion of patient’s goals and preferences improves patient care Oncologists should curtail the use of ineffective therapy and ensure a focus on palliative care

The “problem” 90% of us will die from a chronic, progressive illness 85% of us want to be at “home” 75% of us will die in an institution 50% die in hospitals 25% die in a nursing facility Will not die “well” SUPPORT study Cancer and AIDS symptom burden studies

Sites of Death Death in the US Census: Historically (400 BC-1950 AD) - At home with family

Framework for Continuum of Care

Framework: Integrated Palliative Care Palliative Care Disease Modifying Treatments Hospice Diagnosis Treatments to Relieve Suffering/Improve QOL 6MoDeath Bereavement

Mean survival: “advanced” disease Dementia: years (x = 11 years) CHF: 3 years (x from EF <20%) COPD: years Breast CA (bone mets only): 3 years Lung CA (IIIb/IV): months Multiple hospitalizations Symptom = first indication of advanced disease

Hospice is “Gold Standard” Utilization increasing dramatically: 158,000 (1985) 1,360,000 (2008) NHPCO (2008) Average: 57 days Median: 22 days Primary site = home #1 feedback: “if only I’d known about your services earlier”

Palliative Care Across continuum: 3 years across 57 days through death Physical Practical Emotional Spiritual Reduce suffering Improve Quality of Life Setting: Acute Care Outpatient

Who Does Palliative Care??? Primary PC What all of us should know – AND do… Secondary PC When I need an extra set of eyes and hands… can you give me some advice? Tertiary PC When all of us here can’t figure it out… 16

When does PC start??? 2 weeks before death? Last breath? 6 Months or less “if the disease runs it’s usual course”? “Would it surprise you if they died in the next year?” At Diagnosis? “Whenever I say it does?” Triggers: Identifying Patients in Need of a Palliative Care Assessment in the Hospital Setting: A Consensus Report from the Center to Advance Palliative Care. David E. Weissman, M.D.1 and Diane E. Meier, M.D.2; J OF Pall Med, 14(1), 2011 None exist in the outpatient setting 17

Best Hospitals: Best Practice Top 100 Hospitals (US News & World Report) Has considered the presence of Hospice and Palliative Care services as an indicator of excellence since 2001 All of the Top Ten have Palliative Care programs 46 of the Top 50 Cancer Programs Since 2001: ~20%/year Growth in US Hospital-based Palliative Care 18

US News and World Report Rankings 19

Trends in Hospital-based Palliative Care Consultation: % increase from

H/PC becoming standard… Significant growth in past 5 years:  1486 hospital-based PC Programs (2008)  59% of COTHs have PC Programs (2005)  90 fellowship programs/54 Accredited (2008)  ACGME recognition for training (7/06)  ABMS Recognition as subspecialty (9/06)

ASCO QOPI “Palliative Subset” (Core Measures) Pain Assessment 3. Pain assessed by the second office visit (%) 4. Pain intensity quantified by the second office visit (%) 5. For patients with moderate to severe pain, documentation that pain was addressed (%) Narcotic analgesic assessment 6. Effectiveness of pain medication assessed on visit following new narcotic prescription (%) 7. Constipation assessed at time of or at first visit following new narcotic analgesic prescription (%) Psychosocial support (Test) 21. Chart documents patient’s emotional well-being was assessed within one month of first visit to office (%) 22. For patients identified with a problem with emotional well-being, the chart documents that action was taken within one month of first visit to office (%) 22

ASCO QOPI “Palliative Subset” (Care at End of Life Measures) Pain assessed and documented near the end of life 35. Pain assessed on the second to last or last visit before death (%) 36. Pain intensity quantified on second to last or last visit before death (%) Dyspnea assessed near the end of life 37. Dyspnea assessed on second to last or last office visit before death (%) 38. Action taken to ease dyspnea on second to last or last office visit before death (%) Timing of hospice enrollment 39. Patient enrolled in hospice before death (%) 40. Patient enrolled in hospice/referred for palliative care services before death (%) 41. Patient enrolled in hospice within 3 days of death (%) (Lower Score - Better) 42. Patient enrolled in hospice within 1 week of death (%) (Lower Score - Better) 43. For patients not referred in last 2 months of life, hospice/palliative care discussed (%) Timing of chemotherapy administration before death 44. Chemotherapy administered within the last two weeks of life (%) (Lower Score -Better) 23

Unique Opportunity Integrate the best of: Acute care Hospice Care Palliative Care Further enhance the quality of the continuum of care “Accountable Care” “Transitions” 24

Quality Outcomes of Palliative Care… Reduction of Pain & Symptoms Improves Quality of Life Patient and Family Satisfaction Nurse Satisfaction Physician Satisfaction Reduced Provider/Caregiver burden Care plan consistent with wishes Increased Referral/LOS to Hospice CAPC care/citations/index_html#2 25

PC = Improved Survival The New England Journal of Medicine - original article Early Palliative Care for Patients with Metastatic Non– Small-Cell Lung Cancer RCT – standard care vs standard plus PC Improved QOL Decreased resource utilization (33% vs. 54%, P = 0.05) Lived 3 months longer (11.6 months vs. 8.9 months, P = 0.02) J. Temel, et al., n engl j med 363(8): (august 19, 2010) 26

60 Minutes Nov. 22, 2009 The Cost of Dying: Patients' Last Two Months of Life Cost Medicare $50 Billion Last Year; Is There a Better Way? More than the budget of the Department of Homeland Security or the Department of Education 27

Palliative Care = Quality 28

Integrating Palliative Care into an Outpatient Private Practice Oncology Setting Private practice with 5 offices: Primary office – 7 Medical Oncologists/4 NPs * Integrated PC consultation ½ day/week in April 2005 Secondary office – 2 Medical Oncologists Integrated PC consultation ½ day/week in August 2008 Three additional offices begin summer Medical Oncologists /1 NP 2 Medical Oncologists Integrating Palliative Care into an Outpatient Private Practice Oncology Setting JC Muir, F Daly, M Davis, et al, JPSM 40(1): ,

Clinical Quality Outcomes 30

Symptom Relief (UCSF) 32

Initial Consultation Symptoms 33 96% = 3-5 Symptoms JC Muir, F Daly, M Davis, et al, Integrating Palliative Care into the Outpatient, Private Practice Oncology Setting. JPSM 40(1): , 2010

Symptom Relief 34 ESAS: Edmonton Symptom Assessment Scale/90 JC Muir, F Daly, M Davis, et al, Integrating Palliative Care into the Outpatient, Private Practice Oncology Setting. JPSM 40(1): , 2010

35 MeanMedian Availability of Palliative Care Services: Accessibility of Palliative Care Services: Acceptability Of Palliative Care Services: Continuity of Palliative Care Services: Quality of Palliative Care Services: Cost Impact of Palliative Care Services: Physician Satisfaction JC Muir, F Daly, M Davis, et al, Integrating Palliative Care into the Outpatient, Private Practice Oncology Setting. JPSM 40(1): , 2010

36 Impact of Comprehensive Palliative Oncology in Partnered versus Non-Partnered Practices JC Muir, F Daly, M Davis, et al, Integrating Palliative Care into the Outpatient, Private Practice Oncology Setting. JPSM 40(1): , 2010

37 Estimated FNVHO/F MD* Productive Time Expanded Using Outpatient Palliative Care Services Referring Physician Minutes Average of 170 minutes of provider time saved per referral to PC

Summary Unprecedented opportunity: High quality care Care across an enhanced continuum Reduce health care expenditures 38