Diversity in Palliative Care Across the Life Span

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Diversity in Palliative Care Across the Life Span

• Patricia Beach, MSN, RN, AOCN
• Beth McBurney-White, MSN, CNS
• Mercy Health Partners Northern Region
• Toledo, Ohio

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Objectives

• Describe the development and implementation of a
  palliative care program across the life span
• Discuss the effectiveness of a collaborative
  interdisciplinary team on quality and cost
  effectiveness of a palliative care program
• Communicate opportunities for enhancing diversity
  through a life span approach to palliative care

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Critical System Challenges

• Higher and higher expenses
• Excellence in saving lives
• Chronic illnesses/multiple illnesses
• Prognostication difficulty
• Therapeutic Optimism is the Norm

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Critical Health System Challenges

• Multiple providers
• Payer demands
• Frequent and intense use of services

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Critical Social Challenges

• Expectations for living and dying
• Existential
• Quality of life
• Appropriate care in whatever setting

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What is palliative care?

• an approach that improves the quality of life
  of patients and their families, facing the
  problems associated with life-threatening
  illness, through the prevention and relief from
  suffering, by means of early identification,
  impeccable assessment, treatment of pain and
  other problems physical, psychological and
  spiritual
• WHO 2002

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Palliative Care


Curative Focus Disease-specific Treatments
Bereavement Support
Palliative Focus Comfort/Supportive Treatments
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How is palliative care different from case
management?

• Both
• prevent service fragmentation

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How is palliative care different from case
management?

• Case management
• relies on benchmarks and standards for treatment
  plans
• No medical judgement
• facilitating transitions between settings
• Palliative care
• individualized focus on pain and symptom control
  
• Designing and implementing care plan
• Interdisciplinary team
• Continues after transitions are complete

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Who may be served by palliative care?

• Any person with a life threatening or life
  limiting illnesses.

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When is a palliative care referral appropriate?

• Disease
• Function
• Response to treatment

 
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How old are palliative care patients?

• A person is a person no matter how small
• Dr. Suess

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Growth and Development

• TRUE OR FALSE
• Children and adults have completely different
  needs because of their growth and development.

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Growth and Development

• TRUE OR FALSE
• Childrens developmental needs are so special
  that it is not possible to compare them to adult
  developmental needs.

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Growth and Development

• Psychoanalytical (Freud)
• Social (Erikson)
• Cognitive (Piaget)
• Morality/Spirituality (Kohlberg)

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Growth and Development at Every Age

• Progressive
• Mutuality
• Relative

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Growth and Development Universal Effects

• Relationship stability
• Biological stability
• Almost universal conviction that there is meaning
  to what we are doing

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Interventions Universal Effects

• Remember our relationships
• Scrapbooking
• Videotaping
• Memorials
• Make the experience meaningful
• Journals vs. Drawing
• Listening vs. Playing
• Stay normal
• Days of Our Lives vs. Dora the Explorer
• Bridge Club vs. Cub Scouts

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The Big 2

• Two major differences between adults and children
  in palliative care
• Blessing vs. tragedy
• Medical treatment of symptoms

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Quality of Life

• Everyone with a life threatening illness
  deserves
• Access to relationships that matter
• Pain under control
• Surrounded by people who know what to do and say
• Explanations that are repetitive and clear

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Palliative Care

• Builds relationships
• Encourages sharing of expertise
• Diminishes confusion and frustration
• Being there provides great comfort
• Karen S. Heller and Mildred Solomon, IPPC, 2005

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A life span approach just makes sense

• Smoother transition from pediatrics to adult care
  
• Similar goals can lead to overlap of some members
  of the team thus increasing efficiency and cost
  saving
• Quality measured similarly

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How does approach compare between adults and
children?

• Long term chronic disease
• Curative efforts often continue well into disease
  trajectory
• Services may be temporary
• May recover or greatly stabilize

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Get together the essential people

• Administration
• Financial
• Mission
• Clinical
• Acute care
• Home care
• Hospice care

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Clinical Team

• Physician/APN dyad
• Chaplain
• Social worker
• Nurse coordinator

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You should probably have an advisory committee

• Dietician
• Hospital unit nurse
• Hospice nurse
• School nurse
• Parish nurse
• Risk Management
• Ethicist
• Parents/Consumers
• Community bereavement counselors
• Home care nurse
• Child life
• Quality improvement
• VP Patient Care
• VP Quality Initiatives
• Hospital CEO

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If you dont remember anything else

• The interdisciplinary team is the key

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Half this Game is 90 Mental

• Danny Ozark, Philadelphia Phillies Manager

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Evolution of Palliative Care

• Catholic Healthcare Partners strategic initiative
• Mercy Health Partners
• Regional task force
• Hospitals
• Mercy Hospital of Tiffin
• Mercy Hospital of Willard
• St. Anne Mercy Hospital
• St. Charles Mercy Hospital
• St. Vincent Mercy Childrens Hospital

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Timeline

• 1999 CHP initiative
• 2000 SVMMC Palliative Care Unit opens
• Consult service begins
• 2001 Palliative Care coordinator for region
• 2003 Palliative Care coordinator for each
  hospital
• MacPac
• 2004 CHP Collaborative
• Symptom Management Clinic
• Measurement system-wide
• 2005 MIDAS Focus study

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Grants Awarded

• Program Development
• Unit renovations
• 1999 100,000.00
• Spiritual care
• 2000 290,000.00
• Memorial envelopes, comfort baskets
• over 5 years 11,000.00

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Grants Awarded

• Palliative Care Coordinators
• Annually 25,000.00
• Annually 22,000.00-25,000.00 MaCPaC
• American Academy of Pediatrics CATCH grant
• 10,000.00
• TOTAL 642,340.50 over 8 years

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Midas Focus Study

• Disease
• Advance care planning
• ICU days
• Discharge plan
• Readmissions

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Disease
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Children Palliative Care
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ICU days

• About 50 of palliative care patients come from
  an ICU
• An additional 15 from monitored units
• Just less than 25 directly from ED

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Community Access to Child Health Grant

• GAPS Gaps in Pediatric Palliative Care Study
• Expansion and extension of 2005 needs assessment
• State wide physician survey
• Qualitative parent survey

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How Quality is Assessed

• Degree to which health services increase the
  likelihood of desired health outcomes and are
  consistent with current professional standards of
  care.

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Quality Care

• Clinical Practice Guidelines for Quality
  Palliative Care (National Consensus Project,
  2004)
• A National Framework Preferred Practices for
  Palliative Hospice Care Quality (National
  Quality Forum, 2007)

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Both have 8 domains of care

• Structure process
• Physical
• Psychosocial psychiatric
• Social
• Spiritual, religious existential
• Cultural
• Care of the imminently dying patient
• Ethical legal

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Definition of Quality in Healthcare

• Patient-centered
• Beneficial
• Timely
• Safe
• Equitable
• Efficient
• National Quality Forum www.qualityforum.org
• Institute for Healthcare Improvement
  www.ihi.org

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Is Palliative Care Patient and Family-Centered?

• To answer this question we need to know what
  persons with serious illness want from our
  healthcare system.

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What Do Family Caregivers Want?

• Study of 475 family members 1-2 years after
  bereavement
• Loved ones wishes honored
• Inclusion in decision processes
• Support/assistance at home
• Practical help (transportation, medicines,
  equipment)
• Personal care needs (bathing, feeding, toileting)
• Honest information
• 24/7 access
• To be listened to
• Privacy
• To be remembered and contacted after the death
• Tolle et al. Oregon report card.1999
  www.ohsu.edu/ethics

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What Do Patients Want?

• Freedom from pain
• At peace with God
• Presence of family
• Mentally aware
• Treatment choices followed
• Finances in order
• Feel life was meaningful
• Resolve conflicts n340 seriously ill patients
• Die at home Steinhauser et al. JAMA 2000

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Advance Care PlanningBefore Palliative Care
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Advance Care PlanningAfter Palliative Care
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2. Is Palliative Care Beneficial?

• Does hospice and palliative care demonstrably
  improve the experience of serious illness for
  patients and their families?

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Are Hospice and Palliative Care Demonstrably
Beneficial?

• The Evidence
• Reduction in symptom burden
• Improved patient and family satisfaction
• Reduced costs

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Does Hospital Palliative Care Improve Outcomes?
Results from Systematic Reviews

• Compared to conventional care, HPCTs were
  associated with significant improvements in
• Pain
• Non-pain symptoms
• Patient/family satisfaction
• Hospital length of stay, in-hospital deaths

Jordhay et al Lancet 2000Higginson et al,
JPSM, 2003 Finlay et al, Ann Oncol 2002
Higginson et al, JPSM 2002.
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Deaths in ICU
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Model for Improvement

• Plan-Do-Study-Act
• Try it out and learn from trying and learn from
  trying
• PLAN
• State an AIM- 90 of patient pain reduced to a
  tolerable patient specified level within 24 hours
  of initial complaints of pain
• Choose a MEASURE Identify specific members of
  hospital team
• Review 5 charts per week to identify -initial
  complaints of pain (0-10 scale), tolerable level
  in 24 hours (yes/no)
• Select CHANGES to try-Unit leader rounding and
  asking patients about pain-Education for nurse
  manager staff nurses Symptom Management Clinic
• Conduct small scale rapid cycle TESTS-Trying a
  measure and checking its effect

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Symptom Management Clinic
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3. Is palliative care timely?

• Withdrawal of futile support
• Discharge plans
• Palliative care attended deaths

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Ventilator Withdrawal

• A little over 1/3 of our patients have ventilator
  withdrawn
• Another 50-60 have changes in ventilator

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Discharge Plans

• About ½ patients die in hospital
• Hospice discharges-home, ECF, inpatient hospice
  unit

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Palliative Care Attended Deaths

• Cared for by palliative care consultant team OR
• Admitted to a palliative care unit or designated
  bed OR
• In the last 24 hours of life evidence of
• Symptom management.
• Spiritual care offered.
• Goals of care discussed.

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Palliative Care Attended Deaths
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Is Hospice and Palliative Care Safe?

• No studies of medical error rate associated with
  palliative and hospice care
• Studies do not show any difference in mortality
  rate or timing of death between
  palliative/hospice care patients and usual care
  groups.
• Research needed.

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5. Is Hospice and Palliative Care Equitable?

• Studies suggest that minorities
  (African-American, Hispanic-Latino, Asian) less
  likely to receive palliative hospice care than
  whites.
• Hospice data 78 white (vs. 75 U.S.) 8 A-A
  (vs. 12.3 U.S.) 6 Hispanic (vs. 12.5 U.S.)
  2 Asian (vs.3.6 U.S.) 6.4 multiracial.
• No ethnic-racial data on hospital palliative care
  consult services

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6. Is Palliative-Hospice Care Efficient?

• Creating ICU bed capacity with PCU transfers
• ICU bed capacity decreases necessity for ED
  bypass
• APN reimbursement in an outpatient setting

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Palliative Care Is Cost-Saving supports
transitions to more appropriate care settings

• Palliative care lowers costs (for hospitals and
  payers) by reducing hospital and ICU length of
  stay, and direct (such as pharmacy) costs.
• Palliative care improves continuity between
  settings and increases hospice/nursing home
  referral by supporting appropriate transition
  management.

Lilly et al, Am J Med, 2000 Dowdy et al, Crit
Care Med, 1998 Carlson et al, JAMA, 1988
Campbell et al, Heart Lung, 1991 Campbell et al,
Crit Care Med, 1997 Bruera et al, J Pall Med,
2000 Finn et al, ASCO, 2002 Goldstein et al,
Sup Care Cancer, 1996 Advisory Board 2002
Project Safe Conduct 2002, Smeenk et al Pat Educ
Couns 2000 Von Gunten JAMA 2002 Schneiderman et
al JAMA 2003 Campbell and Guzman, Chest 2003
Smith et al. JPM 2003 Smith, Hillner JCO 2002
www.capc.org Gilmer et al. Health Affairs 2005.
Campbell et al. Ann Int Med.2004 Health Care
Advisory Board. The New Medical Enterprise 2004.
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Palliative Care Reduces Direct Costs per Day
Prior to Death

• Panalyses
• All adult deaths (18 years) for calendar years
  2002, 2003
• LOS 10 - 35 days
• 30 most frequent DRGs for palliative care
  patients
• Palliative Care (N368)
• Usual Care (N1036)

Median Day of First Palliative Care Consult
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Do Palliative and Hospice Care Improve Quality?

• Patient-centered? Yes
• Beneficial? Yes
• Timely? No
• Safe? No data
• Equitable? No
• Efficient? Yes

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MHP Collaborative 2

• Budget vs. grant funding
• APN billing/revenue opportunities
• Cost avoidance
• Transition from pediatric to adult
• Care transformation chronic care
• Research grants

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Your kid can run faster than my kid, but my kid
has a car

• Look at your strengths through new eyes
• Using technology to sustain essential
  relationships
• Conference calls
• On-line education
• EHR

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Never doubt that a small group of thoughtful,
committed people can change the world. Indeed
its the only thing that ever has. Margaret Meade