Suffering at End of Life: Michigan Status Report & Recommendations

1. Suffering at End of Life:Michigan Status Report& Recommendations Kay Presby MPH RN Pain & Symptom Management Committee 02.08.07

2. Data Sources • 2004 EOL Needs Assessment • 50 Stakeholder & 57 hospice mgr interviews • 2002 Michigan Resident Death File • 2004 Special Cancer Behavioral Risk Factor Survey, EOL Module • Even years, phone, MPHI & MSU IPPSR • 2006 Census of Hospital-Based Palliative Care Programs Pain & Sx Mgt Commiittee 02.08.07

3. Project Sponsors • Michigan Dept of Community Health • Michigan Public Health Institute • Michigan Hospice & Palliative Care Organization • Michigan Cancer Consortium Pain & Sx Mgt Commiittee 02.08.07

4. Good News Infrastructure • Expert professionals • Model programs • Palliative care teams A EOL Pain Policy Pain & Sx Mgt Commiittee 02.08.07

5. Location of Hospital-Based PC Teams Pain & Sx Mgt Commiittee 02.08.07

6. Good News Infrastructure • Expert professionals • Model programs • Palliative care teams Public Awareness • 90% aware of hospice • 60% use hospice A EOL Pain Policy Pain & Sx Mgt Commiittee 02.08.07

7. Disappointing News • Policy has had little impact on practice. • Hospice length of service is dropping. • 1/3 die before one week • Median LOS is 18 days Needless suffering still is widespread in Michigan. Pain & Sx Mgt Commiittee 02.08.07

8. Michigan Commission on EOL Care, 2002 Stakeholders, 2004(n=50) “The lack of effective pain and symptom management is a public health issue that requires the highest level of professional and regulatory attention.” 80% named eliminating unnecessary suffering as the top end of life priority. Who says so? Pain & Sx Mgt Commiittee 02.08.07

9. Hospice managers, 2004 Patients & families, 2004 90% ~ Pain management is a problem in their service area. 48% ~ At least half of patients admitted in severe pain (6+). Why not before? Why doesn’t anyone else know? How could you do this so quickly? Who says so? Pain & Sx Mgt Commiittee 02.08.07

10. Place of Death by Age, Michigan 2002 Michigan Resident Death File, 2002 Pain & Sx Mgt Commiittee 02.08.07

11. Distribution of Decedents, Any Terminal Illness, by Site & Avg Pain Level for Final 3 Months,MI 2004 BRFS Pain & Sx Mgt Commiittee 02.08.07

12. 87,500 61,250 23,275 Average annual count of deaths in Michigan 70% die of chronic disease 38% live their final 3 months with severe to excruciating pain, as reported by caregivers Back of the envelope… Pain & Sx Mgt Commiittee 02.08.07

13. Pain & Sx Mgt Commiittee 02.08.07

14. Pain & Sx Mgt Commiittee 02.08.07

15. The person in pain today does not have to wait for a better drug to be developed ~ he just needs someone to prescribe correctly what we already know.” (Joanne Lynn, MD, 2000) Goldie ~ Detroit metro Tom ~ western Mich Henry ~ mid Michigan James ~ northern MI Colleen ~ thumb Put a face on the suffering… Pain & Sx Mgt Commiittee 02.08.07

16. Invisible to Health Care System? • Not according to Wennberg study of intensity of services during final 6 mos for Michigan Medicare decedents in 1995-96: • 15% to 45% were admitted to ICU • Average no. of physician visits: 16 to 34 • Up to 33% saw 10+ physicians Dartmouth Atlas of Health Care in Michigan, 2000; http://www.bcbsm.org Pain & Sx Mgt Commiittee 02.08.07

17. Then why the suffering? Input from interviewed hospice managers (n=57): 90% Protocol doesn’t fit type or intensity of pain ~ wrong drug, dose, frequency 70% Lack of clinician knowledge re: opioid drugs & dosing, atypical pain; RN reluctance 30% Pain med not taken as directed 10% Side effects, fear of addiction End of Life in Michigan, Needs Assessment Report, 2005 Pain & Sx Mgt Commiittee 02.08.07

18. Critical Issues to Address • Undertreatment of pain has not been embraced as an urgent problem in Michigan. • Clinicians can’t do what they don’t know. • Hospitals are slow to embrace palliative care as a clinical and business priority. • Nursing homes struggle with pain mgt and hospice is not often used. • Consumers expect to suffer. They don’t know that pain is optional at the end of life. Pain & Sx Mgt Commiittee 02.08.07

19. Key Recommendations • Public Health Administration • Establish an end-of-life unit within the Division of Chronic Disease and Injury Control to: • Monitor population needs • Foster alliances and convene partners for coordinated action • Organize and galvanize statewide action • Coordinate action among state units Pain & Sx Mgt Commiittee 02.08.07

20. Key Recommendations • Bureau of Health Professions: • Require CME in pain mgt for license renewal. • Adopt the 2004 FSMB model pain policy. • Bureau of Health Systems: • Require access to hospice services in all nursing homes. • Establish an M-tag for pain management. Pain & Sx Mgt Commiittee 02.08.07

21. Key Recommendations • Medical Services Administration: • Assure coverage and reimbursement for hospice and palliative care services by all health plans. • Require access to palliative care consults in network hospitals; board-certified physicians (ABHPM) and nurses preferred (CHPN, BCPCM). • Division of Chronic Disease & Injury Control • Wage a sustained community organization campaign to prepare consumers to expect and demand effective pain control. Pain & Sx Mgt Commiittee 02.08.07

22. Essential Strategies • Make it easy to do the right thing • Systems • Give the policy teeth • Consequences • Make a plan and assure action • Communicate, implement, sustain, monitor Pain & Sx Mgt Commiittee 02.08.07

23. End-of-Life Needs Assessment Report Available online at the Michigan Cancer Consortium website ~ http://www.michigancancer.org/OurPriorities/EndOfLifeCare_InformationForProviders.cfm Pain & Sx Mgt Commiittee 02.08.07