Suffering at End of Life: Michigan Status Report

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Suffering at End of LifeMichigan Status
Report Recommendations

• Kay Presby MPH RN
• Pain Symptom Management Committee 02.08.07

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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

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Project Sponsors

• Michigan Dept of Community Health
• Michigan Public Health Institute
• Michigan Hospice Palliative Care Organization
• Michigan Cancer Consortium

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Good News

• Infrastructure
• Expert professionals
• Model programs
• Palliative care teams

A
EOL Pain Policy
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Location of Hospital-Based PC Teams
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Good News

• Infrastructure
• Expert professionals
• Model programs
• Palliative care teams
• Public Awareness
• 90 aware of hospice
• 60 use hospice

A
EOL Pain Policy
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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.

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Who says so?

• Michigan Commission on EOL Care, 2002
• Stakeholders, 2004(n50)

• 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.

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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 doesnt anyone else know?
• How could you do this so quickly?

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Place of Death by Age, Michigan 2002

• Michigan Resident Death File, 2002

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Distribution of Decedents, Any Terminal Illness,
by Site Avg Pain Level for Final 3 Months, MI
2004 BRFS
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Back of the envelope

• 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

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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

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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

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Then why the suffering?

• Input from interviewed hospice managers (n57)
• 90 Protocol doesnt 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

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Critical Issues to Address

• Undertreatment of pain has not been embraced as
  an urgent problem in Michigan.
• Clinicians cant do what they dont 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 dont know that
  pain is optional at the end of life.

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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

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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.

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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.

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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

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End-of-Life Needs Assessment Report

• Available online at the Michigan Cancer
  Consortium website
• http//www.michigancancer.org/OurPriorities/EndOf
  LifeCare_InformationForProviders.cfm