suffering at end of life: michigan status report & recommendations

Suffering at End of Life:Suffering at End of Life:Michigan Status ReportMichigan Status Report& Recommendations& Recommendations

Kay Presby MPH RNKay Presby MPH RNPain & Symptom Management Committee 02.08.07Pain & Symptom Management Committee 02.08.07

Pain & Sx Mgt Commiittee 02.08.07Pain & Sx Mgt Commiittee 02.08.07 22

Data SourcesData Sources

2004 EOL Needs Assessment2004 EOL Needs Assessment 50 Stakeholder & 57 hospice mgr interviews50 Stakeholder & 57 hospice mgr interviews 2002 Michigan Resident Death File2002 Michigan Resident Death File

2004 Special Cancer Behavioral Risk Factor 2004 Special Cancer Behavioral Risk Factor Survey, EOL ModuleSurvey, EOL Module Even years, phone, MPHI & MSU IPPSREven years, phone, MPHI & MSU IPPSR

2006 Census of Hospital-Based Palliative 2006 Census of Hospital-Based Palliative Care ProgramsCare Programs


Project SponsorsProject Sponsors

Michigan Dept of Community HealthMichigan Dept of Community Health Michigan Public Health Institute Michigan Public Health Institute Michigan Hospice & Palliative Care Michigan Hospice & Palliative Care

OrganizationOrganization Michigan Cancer ConsortiumMichigan Cancer Consortium


Good NewsGood News

InfrastructureInfrastructure Expert professionalsExpert professionals Model programsModel programs Palliative care teamsPalliative care teams

A

EOL Pain Policy


Location of Hospital-Based PC TeamsLocation of Hospital-Based PC Teams


Good NewsGood News

InfrastructureInfrastructure Expert professionalsExpert professionals Model programsModel programs Palliative care teamsPalliative care teams

Public AwarenessPublic Awareness 90% aware of hospice90% aware of hospice 60% use hospice60% use hospice

A

EOL Pain Policy


Disappointing NewsDisappointing News

Policy has had little impact on practice.Policy has had little impact on practice. Hospice length of service is dropping.Hospice length of service is dropping.

1/3 die before one week1/3 die before one week Median LOS is 18 daysMedian LOS is 18 days

Needless suffering still is widespread in Needless suffering still is widespread in Michigan.Michigan.


Who says so?Who says so?

Michigan Michigan Commission Commission on EOL Care, on EOL Care, 20022002

Stakeholders, Stakeholders, 20042004(n=50)(n=50)

““The lack of effective pain The lack of effective pain and symptom management and symptom management is a public health issue that is a public health issue that requires the highest level of requires the highest level of professional and regulatory professional and regulatory attention.”attention.”

80% named eliminating 80% named eliminating unnecessary suffering as the unnecessary suffering as the top end of life priority.top end of life priority.


Who says so?Who says so?

Hospice Hospice managers, managers, 20042004

Patients & Patients & families, families, 20042004

90% ~ Pain management is a 90% ~ Pain management is a problem in their service area.problem in their service area.

48% ~ At least half of patients 48% ~ At least half of patients admitted in severe pain (6+).admitted in severe pain (6+).

Why not before?Why not before? Why doesn’t anyone else Why doesn’t anyone else

know?know? How could you do this so How could you do this so

quickly?quickly?


Place of Death by Age, Michigan 2002Place of Death by Age, Michigan 2002

34%

46%

52%

52%

46%

47%

27%

13%

24%

18%

25%

32%

34%

27%

5%

0% 100%

85+

75 - 84

65 - 74

<65

All

Age

at D

eath

Percentage of Deaths by Site

Hospital Nsg Home Home Other

Michigan Resident Death File, 2002Michigan Resident Death File, 2002


Distribution of Decedents, Distribution of Decedents, Any Terminal IllnessAny Terminal Illness, by Site , by Site & Avg Pain Level for Final 3 Months,& Avg Pain Level for Final 3 Months, MI 2004 BRFSMI 2004 BRFS

0 10 20 30 40 50 60 70 80

Other (N = 16)

Hospice Building (N = 14)

Hospital (N = 62)

Nursing Home (N = 85)

Home Setting (N = 524)

All Locations (N = 701)

Percentage

None Mild to Moderate Severe to Excruciating


Back of the envelope…Back of the envelope…

87,50087,500

61,25061,250

23,27523,275

Average annual count of Average annual count of deaths in Michigandeaths in Michigan

70% die of chronic disease70% die of chronic disease

38% live their final 3 months 38% live their final 3 months with severe to excruciating with severe to excruciating pain, as reported by pain, as reported by caregiverscaregivers


Put a face on the suffering…Put a face on the suffering…

The person in pain todayThe person in pain today

does not have to waitdoes not have to wait

for a better drugfor a better drug

to be developed ~ to be developed ~

he just needs someonehe just needs someone

to prescribe correctlyto prescribe correctly

what we already know.”what we already know.” (Joanne Lynn, MD, 2000)(Joanne Lynn, MD, 2000)

Goldie ~ Detroit metroGoldie ~ Detroit metro Tom ~ western MichTom ~ western Mich Henry ~ mid MichiganHenry ~ mid Michigan James ~ northern MIJames ~ northern MI Colleen ~ thumbColleen ~ thumb


Invisible to Health Care System?Invisible to Health Care System?

Not according to Wennberg study of intensity Not according to Wennberg study of intensity of services during final 6 mos for Michigan of services during final 6 mos for Michigan Medicare decedents in 1995-96:Medicare decedents in 1995-96: 15% to 45% were admitted to ICU15% to 45% were admitted to ICU Average no. of physician visits: 16 to 34Average no. of physician visits: 16 to 34 Up to 33% saw 10+ physiciansUp to 33% saw 10+ physicians

Dartmouth Atlas of Health Care in Michigan, 2000; Dartmouth Atlas of Health Care in Michigan, 2000; http://www.bcbsm.orghttp://www.bcbsm.org


Then why the suffering?Then why the suffering?Input from interviewed hospice managers (n=57):Input from interviewed hospice managers (n=57):

90%90% Protocol doesn’t fit type or intensity of Protocol doesn’t fit type or intensity of pain ~ wrong drug, dose, frequencypain ~ wrong drug, dose, frequency

70%70% Lack of clinician knowledge re: opioid drugsLack of clinician knowledge re: opioid drugs

& dosing, atypical pain; RN reluctance& dosing, atypical pain; RN reluctance

30%30% Pain med not taken as directedPain med not taken as directed

10%10% Side effects, fear of addictionSide effects, fear of addiction

End of Life in Michigan, Needs Assessment Report, 2005End of Life in Michigan, Needs Assessment Report, 2005


Critical Issues to AddressCritical Issues to Address

Undertreatment of pain has not been Undertreatment of pain has not been embraced as an urgent problem in Michigan.embraced as an urgent problem in Michigan.

Clinicians can’t do what they don’t know.Clinicians can’t do what they don’t know. Hospitals are slow to embrace palliative care Hospitals are slow to embrace palliative care

as a clinical and business priority.as a clinical and business priority. Nursing homes struggle with pain mgt and Nursing homes struggle with pain mgt and

hospice is not often used.hospice is not often used. Consumers expect to suffer. Consumers expect to suffer.

They don’t know that pain is optional at the They don’t know that pain is optional at the end of life.end of life.


Key RecommendationsKey Recommendations

Public Health AdministrationPublic Health Administration Establish an end-of-life unit within the Division Establish an end-of-life unit within the Division

of Chronic Disease and Injury Control to:of Chronic Disease and Injury Control to: Monitor population needsMonitor population needs Foster alliances and convene partners for Foster alliances and convene partners for

coordinated actioncoordinated action Organize and galvanize statewide actionOrganize and galvanize statewide action Coordinate action among state unitsCoordinate action among state units



Bureau of Health Professions:Bureau of Health Professions: Require CME in pain mgt for license renewal.Require CME in pain mgt for license renewal. Adopt the 2004 FSMB model pain policy.Adopt the 2004 FSMB model pain policy.

Bureau of Health Systems:Bureau of Health Systems: Require access to hospice services in all Require access to hospice services in all

nursing homes.nursing homes. Establish an M-tag for pain management.Establish an M-tag for pain management.



Medical Services Administration:Medical Services Administration: Assure coverage and reimbursement for hospice and Assure coverage and reimbursement for hospice and

palliative care services by all health plans.palliative care services by all health plans. Require access to palliative care consults in network Require access to palliative care consults in network

hospitals; board-certified physicians (ABHPM) and hospitals; board-certified physicians (ABHPM) and nurses preferred (CHPN, BCPCM).nurses preferred (CHPN, BCPCM).

Division of Chronic Disease & Injury ControlDivision of Chronic Disease & Injury Control Wage a sustained community organization campaign Wage a sustained community organization campaign

to prepare consumers to expect and demand effective to prepare consumers to expect and demand effective pain control.pain control.


Essential StrategiesEssential Strategies

Make it easy to do the right thingMake it easy to do the right thing SystemsSystems

Give the policy teethGive the policy teeth ConsequencesConsequences

Make a plan and Make a plan and assure actionassure action Communicate, implement, sustain, monitorCommunicate, implement, sustain, monitor


End-of-Life Needs Assessment ReportEnd-of-Life Needs Assessment Report

Available online at the Michigan Cancer Available online at the Michigan Cancer Consortium website ~Consortium website ~

http://www.michigancancer.org/OurPriorities/http://www.michigancancer.org/OurPriorities/EndOfLifeCare_InformationForProviders.cfmEndOfLifeCare_InformationForProviders.cfm

suffering at end of life: michigan status report & recommendations

Documents

brfspain sx mgt commiittee

pain management

severe pain

hospice care q8

eol care

lack of effective pain

michigan commission

site avg pain level