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

2. Pain & Sx Mgt Commiittee 02.08.072 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

3. Pain & Sx Mgt Commiittee 02.08.073 Project Sponsors  Michigan Dept of Community Health  Michigan Public Health Institute  Michigan Hospice & Palliative Care Organization  Michigan Cancer Consortium

4. Pain & Sx Mgt Commiittee 02.08.074 Good News Infrastructure  Expert professionals  Model programs  Palliative care teams A EOL Pain Policy

5. Pain & Sx Mgt Commiittee 02.08.075 Location of Hospital-Based PC Teams

6. Pain & Sx Mgt Commiittee 02.08.076 Good News Infrastructure  Expert professionals  Model programs  Palliative care teams Public Awareness  90% aware of hospice  60% use hospice A EOL Pain Policy

7. Pain & Sx Mgt Commiittee 02.08.077 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.

8. Pain & Sx Mgt Commiittee 02.08.078 Who says so?  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.

9. Pain & Sx Mgt Commiittee 02.08.079 Who says so?  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?

10. Pain & Sx Mgt Commiittee 02.08.0710 Place of Death by Age, Michigan 2002 Michigan Resident Death File, 2002

11. Pain & Sx Mgt Commiittee 02.08.0711 Distribution of Decedents, Any Terminal Illness, by Site & Avg Pain Level for Final 3 Months, MI 2004 BRFS

12. Pain & Sx Mgt Commiittee 02.08.0712 Back of the envelope… 87,50061,25023,275 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

13. Pain & Sx Mgt Commiittee 02.08.0713

14. Pain & Sx Mgt Commiittee 02.08.0714

15. Pain & Sx Mgt Commiittee 02.08.0715 Put a face on the suffering… 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

16. Pain & Sx Mgt Commiittee 02.08.0716 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 http://www.bcbsm.org

17. Pain & Sx Mgt Commiittee 02.08.0717 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

18. Pain & Sx Mgt Commiittee 02.08.0718 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.

19. Pain & Sx Mgt Commiittee 02.08.0719 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

20. Pain & Sx Mgt Commiittee 02.08.0720 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.

21. Pain & Sx Mgt Commiittee 02.08.0721 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.

22. Pain & Sx Mgt Commiittee 02.08.0722 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

23. Pain & Sx Mgt Commiittee 02.08.0723 End-of-Life Needs Assessment Report Available online at the Michigan Cancer Consortium website ~ http://www.michigancancer.org/OurPriorities/ EndOfLifeCare_InformationForProviders.cfm