Assuring Safe Passage: Moving Conversations about the End of Life Upstream

1. Assuring Safe Passage: Moving Conversations about the End of Life Upstream Susan D. Block, MD Chair, Department of Psychosocial Oncology and Palliative Care Professor of Psychiatry and Medicine Dana-Farber Cancer Institute Brigham and Women’s Hospital Harvard Medical School Center for Palliative Care

2. End-of-Life Conversations “It’s too early until it’s too late.”

3. Objectives • Provide overview of communication about end-of-life care and propose evidence-based approach to improve process • Describe rationale for early values and goals discussions as a high-value clinical intervention • Review rationale for use of checklists in medicine • Describe a systems approach to serious illness communication for patients with serious and life-threatening illness

4. What are the biggest challenges you face in communicating with patients about end-of-life care?

5. The end-of-life experience of cancer patients • Patients who receive hospice care report better quality of life at the end of life • Aggressive care is associated with reduced quality of life, more physical and emotional distress at the EOL • In last month of life, cancer patients experience: • Chemotherapy (40%) • Emergency department visits (48%) • Hospital admissions (50%) • Death in ICU (8%) • 55-75% have serious pain, anxiety, discomfort • No hospice referral (35%) • Late hospice referral (median 16 days)

6. Impact on family/caregivers • Death in hospital /ICU is associated with 9-11 times higher rate of PTSD, generalized anxiety disorder and prolonged grief disorder among bereaved caregivers • Family members of patients who die report higher satisfaction levels with care in hospice than in hospital

7. End-of-Life Experiences

8. Quality of end-of-life care (Teno 2004)

9. Advance Care Planning • About 30% of Americans have an Advance Directive (Keeter 2006) • No evidence that discussion of ACP increases anxiety or hopelessness (Wright 2008) • Discussion in health care setting about ACP is associated with increased discussion by patient with family, friends (Jones 2011) • RCTs: In older patients, ACP is associated with higher level of goal-consistent care (Detering 2010; Silveira 2010)

10. Cancer Patients and EOL Discussions • Only 37% of cancer patients with average survival of 4 months reported having had discussion about EOL issues with physician (Wright 2008) • Although 95% of hospitalized oncology patients believe it is important to have discussions about advance directives/EOL care, only 41% have them • Major barrier: Oncologists don’t bring up issue (Dow 2010) • 37% of cancer patients admitted to ICU had no HCP or living will (Halpern 2011)

11. Prognostication • 90% of patients on dialysis (20-25% annual mortality rate) report they have not discussed prognosis (Davison et al. 2010) • 75-90% of patients and caregivers (multiple diseases) say they want all the information about their disease , including prognosis (Jenkins 2001, Mack 2006; Janssen et al. 2012)

12. But…we don’t do it routinely and well • Discussions happen late, patients are unprepared, and are often at their worst • Large prospective cohort study, lung and colorectal cancer • 87% of patients who died had EOL discussion reported or documented • 55% of first conversations took place in hospital • First conversation took place a median of 33 days before death • Only 27% were conducted by oncologists (Mack 2012)

13. Even when we do ACP, there are problems with EHR documentation • Advance care planning information found in: • Progress notes 69% • Scanned documents 43% • Problem lists 34% Seale et al. Clin Med & Research 2012 • Many had documentation in multiple locations, not all consistent • No standardization in type of information collected and location of information

14. Does documentation improve care? • Increased documentation is associated with more concordance of patient values with care received (Morrison 2005)

15. End-of-life discussions are a high-value clinical intervention

16. Improving quality • Early discussion of end-of-life care issues among cancer patients is associated with improved outcomes: • Patients more likely to have wishes followed • Increases quality of life • Reduces rate of hospitalization and ICU admission • Increases use of hospice • Reduces stress, anxiety, depression, PTSD and bereavement morbidity in survivors • Improves family satisfaction • Strengthens clinician-patient relationship (Wright 2008)

17. Reducing costs • 25% of Medicare costs occur in last year of life; 50% of costs are on hospitalization • Early conversations associated with 36% cost reduction (Zhang 2009) • MGH early palliative care RCT in patients with NSCLC showed 29% reduction in hospital days; major focus of visits was communication (Temel 2010, Jacobsen 2011)

18. Analyze failures in the processes of care A Systematic Approach to Designing Better Performance Identify Pause Points Identify best practices to avert key failures for each Pause Point Distill into practical intervention (e.g., checklist) Redraft Try and retry the intervention Problem

19. Failures in End-of-Life Planning • Patients are not prepared to talk about the end of life • No system for identifying appropriate patients • Unclear who should conduct the conversation • Inadequate clinician competency/comfort in EOL discussions • Conversations happen too late • Clinicians focus on procedures, rather than values and goals • Patients often don’t know how to discuss with family; family members don’t understand patient’s wishes • Information about patient wishes is not clearly and predictably recorded in EHR

20. Prepare Patients: Health Care Agent Designation for all Newly Diagnosed Patients • Systems-level standard: • All patients < 65 or with serious or chronic illness should designate HCP (or decline in writing) within first three visits • Normalizes discussion for patients, clinicians • “Cancer is a serious illness; unexpected things happen we need to be prepared; helps assure your wishes will be followed”

21. DFCI Health Care Proxy Initiative

22. Identify Triggers: COPD • Initiation of new or different treatments • Lack of further treatment options • Functional decline • Symptom exacerbation • Ongoing oxygen requirement • Hospitalizations Janssen DJA et al. Patient Education and Counseling 2012

23. Identify Triggers: CHF • Annual CHF review • Increased symptoms • Reduced function • Hospitalization • Progressive increase in diuretic need • Hypotension • Azotemia • Initiation of inotrope therapy • First or recurrent shock (Allen et al. Circulation 2012)

24. Identify Triggers: Cancer • Prognosis-related triggers • “Would you be surprised if this patient died in the next year?”(Moss AH, et al.2010) • Disease-based/condition-based criteria, e.g.: • All patients with NSCLC, pancreatic cancer, GBM • Patients over 70 with AML • Treatment-based identification • Prostate cancer: 4 visits + cabazitaxel • Renal cancer: 4 visits + everolimus

25. Train Clinicians • RCTs: Communication skills training programs work (Jenkins 2002, Fallowfield 2006, Szmuilowicz 2010) • Other studies demonstrate impact of training (Sullivan 2005, Back et al. 2007) • Key elements: • cognitive input • modeling • skills practice with feedback • Improvements are maintained for at least 6 months (Maguire 2002, Sullivan 2006)

26. Prompt Clinicians to Discuss End-of-Life Preferences • Initiate discussion early • Outpatient setting, no crisis • Clinician initiates discussion • Ongoing clinician-patient relationship • Focus initially on discussion, exploration, NOT decisions • Allows patient time to adjust to reality of poor prognosis without pressure to make major decisions • Allows patient time to talk with family about wishes

27. What do checklists do? • Bridge gap between evidence and “real world” implementation • Assure adherence to key processes • Achieve higher level of baseline performance • Ensure completion of necessary tasks during complex, stressful situations

28. A tested structure for communication: 7 questions to guide EOL care

29. Prompt patients to discuss EOL planning with family members

31. Document in EHR • Goal: A “single source of truth” in electronic health record • Structured documentation format supports acquisition and communication of key information

32. Partners Health System Advance Care Planning Module

35. Outcomes?

36. Is the checklist discussion harmful?Anxiety before & after Checklist discussion Mean GAD score: Baseline = 4.24 Post-SICC = 3.09

37. Is the checklist discussion harmful? Depression before & after Checklist discussion Mean PHQ score: Baseline = 5.34 Post-SICC = 4.00

38. How did clinicians think the Checklist discussion affected their patients?

39. Do patients find the Checklist conversation acceptable?

40. Does the Checklist help the clinicians?

41. Checklist Acceptability

42. How do patients rank their priorities after discussion?

43. Most patients say they received the right amount of information…

44. Effectiveness

45. Summary of preliminary data • Checklist discussions are feasible • Checklist discussions do not appear to be harmful • No increase in anxiety or depression • Patients and clinicians find discussions helpful • Apparent gap in communication of prognosis to patients