Palliative Care in Hospitals: Making the Case

1
Palliative Care in HospitalsMaking the Case

• Diane E. Meier, MD
• Director
• Center to Advance Palliative Care
• in Hospitals and Health Systems
• a Robert Wood Johnson Foundation - Mount Sinai
  School of Medicine initiative
• 10.10.02

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• Center to Advance Palliative Care
• Mount Sinai School of Medicine
• 1255 5th Avenue, C-2
• New York, NY 10029
• 212-201-2670 office
• 212-426-1369 fax
• 212-201-2680 event line
• www.capc.org

A national initiative supported by The Robert
Wood Johnson Foundation at the Mount Sinai School
of Medicine.
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Palliative Care

• Interdisciplinary care that aims to relieve
  suffering and improve quality of life for
  patients with advanced illness and their
  families.
• It is offered simultaneous with all other
  appropriate medical treatment.

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The Cure - Care Model The old system
D E A T H
Life Prolonging Care
Palliative/ Hospice Care
Disease Progression
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(No Transcript)
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Palliative Cares Place in the Course of Illness
Life Prolonging Therapy
Death
Diagnosis of serious illness
Palliative Care
Medicare Hospice Benefit
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Palliative Care
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Hospital-based palliative careThe 5 main
arguments

• Clinical imperative
• Concordance with patient and family preferences
• Demographic imperative meets the needs of
  growing aging and chronically ill population
• Educational imperative
• Fiscal imperative cost avoidance, improved
  hospital capacity

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Defining and Making the Case for Palliative Care

• Different attributes of palliative care appeal to
  different audiences
• Alignment of messages and mission is key to
  making the successful case for palliative care

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Message alignment for palliative care The
patient perspective

• For patients, palliative care is a key tool to
• relieve symptom distress pain, nausea,
  breathlessness, anxiety, depression, fatigue,
  weakness
• navigate a complex and confusing medical system
• understand the plan of care
• help coordinate and control care options
• allow simultaneous palliation of suffering along
  with continued disease modifying treatments (no
  requirement to give up curative care)
• provide practical and emotional support for
  exhausted family caregivers

11
Message alignment for palliative care The
clinician perspective

• For clinicians, palliative care is a key tool to
• handle repeated, intensive patient-family
  communications, coordination of care across
  settings, comprehensive discharge planning
• manage day-to-day pain and distress of highly
  symptomatic and complex cases, 24/7, thus
  supporting the treatment plan of the primary
  physician
• promote patient and family satisfaction with the
  quality of the care provided

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Message alignment for palliative care The
hospital perspective

• For hospitals, palliative care is a key tool to
• effectively treat the growing number of people
  with complex advanced illness
• provide service excellence, patient-centered care
• increase patient and family satisfaction
• improve staff satisfaction and retention
• meet JCAHO quality standards
• rationalize the use of hospital resources
• increase capacity, reduce costs

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Why palliative care?

• 1. Clinical imperative
• the quality of the care given to persons with
  serious and complex illnesses

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Why hospital-based palliative care? The clinical
imperative

• Hospitals are where the sickest people go and
  remain the site of death for many.
• Patients feel a loss of control and unsafe in the
  medical system.
• Numerous studies document unnecessary patient
  suffering.
• Patients want and will demand better care.
• Family caregiver burden
• Hospitals and clinicians struggling to do better,
  meet JCAHO pain, quality standards

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Site of death Time trends

• 1989 1993__1997
• Hospitals 65 56 53
• Nursing homes 18 19 24
• Home 17 21 23
• (Teno et al, Brown Site of Death Atlas of the
  U.S www.chcr.brown.edu/dying/usa_statistic
  s.htm and
• 1993 National Mortality Followback Survey )

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Everybody with serious illness spends at least
some time in a hospital...

• 98 of Medicare decedents spent at least some
  time in a hospital in the year before death.
• 15-55 of decedents had at least one stay in an
  ICU in the 6 months before death.
• Dartmouth Atlas of Health Care 1999

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The Nature of Suffering and the Goals of Medicine
- Eric J. Cassell

• The relief of suffering and the cure of
  disease must be seen as twin obligations of a
  medical profession that is truly dedicated to the
  care of the sick. Physicians failure to
  understand the nature of suffering can result in
  medical intervention that (though technically
  adequate) not only fails to relieve suffering but
  becomes a source of suffering itself.

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Death in the hospital What do we know about it?

• Physical suffering
• Poor to non-existent communication about the
  goals of medical care
• Lack of concordance of care with patient and
  family preferences
• Huge financial, physical, and emotional burdens
  on family caregivers
• Suffering in professional caregivers
• Fiscal impact on hospitals

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National data on the experience of dying in 5
tertiary care teaching hospitals

• The SUPPORT Study
• Controlled trial to improve care of seriously ill
  patients
• Multi-center study funded by RWJ
• 9000 patients with life threatening illness, 50
  died within 6 months of entry
• JAMA 19952741591-98

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SUPPORT Phase I Results

• 46 of DNR orders were written within 2 days of
  death.
• Of patients preferring DNR, lt50 of their MDs
  were aware of their wishes.
• 38 of those who died spent gt10 days in ICU.
• Half of patients had moderate-severe pain gt50 of
  last 3 days of life.

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Pain data from SUPPORT

• of 5176 patients reporting moderate to severe
  pain between days 8-12 of hospitalization
• colon cancer 60
• liver failure 60
• lung cancer 57
• MOSF cancer 53
• MOSF sepsis 52
• COPD 44
• CHF 43
• Desbiens Wu. JAGS 200048S183-186.

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Why palliative care?

• 2. Concordance with patient and family wishes
• What is the impact of serious illness on
  patients families? And what do persons with
  serious illness say they want from our healthcare
  system?

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Family caregivers and the SUPPORT study JAMA
19952721839

• Patient needed large amount of family caregiving
  34
• Lost most family savings 31
• Lost major source of income 29
• Major life change in family 20
• Other family illness from stress 12
• At least one of the above 55

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Family caregiversThe numbers

• 1996 United States estimates 25 million
  caregivers deliver care at home to a seriously
  ill relative
• Mean hours caregiving per week 18
• Cost equivalent of uncompensated care 194
  billion dollars (assume 8/hr)
• Levine C. Loneliness of the long-term caregiver
  N Engl J Med 19993401587-90.

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Caregiving needs among terminally ill persons

• Interviews with 900 caregivers of terminally ill
  persons at 6 U.S. sites
• need more help 87 of families
• transportation 62
• homemaking 55
• nursing 28
• personal care 26
• Emanuel et al. Ann Intern Med2000132451

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Caregiver characteristics

• 900 family caregivers of terminally ill persons
  at 6 sites across the U.S.
• Women 72
• Close family member 96
• Over age 65 33
• In poor health 33
• Emanuel et al. N Engl J Med 1999341956.

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Caregiving increases mortality

• Population based cohort study 400 in-home
  caregivers and 400 controls
• Increased risk of death RR 1.6 among caregivers
  reporting emotional strain
• Substantial increased risk of major depression
• Depression associated in multiple studies with
  ischemic heart disease, cancer, and all-cause
  mortality
• Schulz et al. JAMA 19992822215.

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What Do Patients With Serious Illnesses Want?

• Pain and symptom control
• Avoid inappropriate prolongation of the dying
  process
• Achieve a sense of control
• Relieve burdens on family
• Strengthen relationships with loved ones

Singer et al, JAMA 1999
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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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Why palliative care?

• 3. The demographic imperative
• Hospitals need palliative care to effectively
  treat the growing number of persons with serious,
  advanced and complex illnesses.

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The demographic imperativeChronically ill,
aging population is growing

• The 63 of Medicare patients with 2 or more
  chronic conditions account for 95 of Medicare
  spending (CDC)
• The number of people over age 85 will double to 9
  million by the year 2030 (CDC)
• Aging baby boomers will demand better care for
  their parents, then for themselves
• Data show caregivers are severely burdened
  financially, emotionally, and physically (JAMA)
• System patterns, silo payment incentives promote
  acute episodic care, but patients will need a
  continuum of care over years of illness

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Average Life Expectancy
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Who is dying in the U.S. in 2002?

• Median age of death is 78 years, and rising
• Among survivors to age 65, median age at death is
  82 years
• Among survivors to age 80, median age at death is
  88 years

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The demographic imperative Is this patient
terminally ill?

• 94 y/o with moderate dementia, congestive heart
  failure, and recurrent infections. She is
  treated with spoon feeding, antipsychotic
  medications, an ACE inhibitor, a beta blocker,
  and judicious use of diuretics.
• Is this patient terminally ill?
• (slide courtesy of Joan Teno MD, Brown
  University)

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The Demographic ImperativeThe Reality of the
Last Years of Life Death Is Not
Predictable(slide courtesy of Joanne Lynn, MD
Rand Corp.)
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Leading Causes of Death in 1997 77 are not due
to cancer

• Heart disease 33
• Malignant neoplasm 23
• Cerebrovascular disease 7
• COPD 5
• Accidents 4
• Pneumonia 4
• Account for 75 of all deaths
• Natl. Ctr. Health Statistics, CDC,
  1998

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Better care needed from the day of diagnosis of
any serious illness

• People need better care throughout the multi-year
  course of advanced illness
• Medicare Hospice Benefit developed to care for
  the dying regulations require 6 month prognosis
  and decision to forego coverage for life
  prolonging care.
• Additional approaches are needed for much larger
  numbers of persons with chronic, progressive
  illness.

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Why palliative care?

• 4. The educational imperative
• Every doctor and nurse-in-training learns in
  the hospital.

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The educational imperative

• Teaching hospitals are the site of training for
  most clinicians.
• Acknowledged deficits in skills/knowledge and
  attitudinal barriers abound.
• Medical school and residency curricula offer
  little to no teaching in palliative care.
• Meier, Morrison Cassel. Ann Intern Med
  1997127225-30.

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Deficiencies in medical education

• 74 of residencies in U.S. offer no training in
  end of life care.
• 83 of residencies offer no hospice rotation.
• 41 of medical students never witnessed an
  attending talking with a dying person or his
  family, and 35 never discussed the care of a
  dying patient with a teaching attending.
  Billings Block JAMA 1997278733.

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Physician Training in Pain Management

• Oncologists self report
• 86 of their patients undermedicated
• 50 rated pain management in their own practice
  as fair to very poor
• 73 evaluated their own training in pain
  management as fair to very poor

Von Roenn et al, Ann Intern Med, 1993
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The Educational Imperative

• Palliative care not part of medical training, but
  this is changing
• LCME undergraduate medical education requirement
  as of 2000
• ACGME residency training recommendation
• JCAHO recommendations on educating staff
• Message Palliative care best quality care for
  the seriously ill, not less care, not cheaper
  care, and not instead of life-prolonging care

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Palliative care education

• LCME requirement (2000)
• Clinical instruction must include important
  aspects of end of life care.
• ACGME requirements for internal medicine and
  internal medicine subspecialties (2000)
  Each resident should receive instruction in
  the principles of palliative careit is desirable
  that residents participate in hospice and home
  careThe program must evaluate residents
  technical proficiency,communication, humanistic
  qualities, and professional attitudes and
  behavior

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Why palliative care?

• 5. The fiscal imperative
• Population aging, growth in effective
  technologies, and antiquated payment system
  financial crisis for healthcare

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Why Palliative Care? The Fiscal Imperative

• Exponentially rising costs with effective new
  technologies, aging population
• 9.2 growth in hospital payments in 2001
• 76 of projected 2002 Medicare budget will be
  spent on hospital care (198 billion)
• Under DRG system long, high intensity hospital
  stays fiscal crisis for hospitals
• Hospital and insurer of the future will have to
  efficiently and effectively treat serious and
  complex illness in order to survive

46
Medical Spending and Care of the Seriously Ill
1.3 trillion in 2001

• 11 of U.S. health care dollar spent in last year
  of life, much of it on hospital services
• 30 of Medicare costs to the 5 of enrollees with
  most serious and complex illness
• (Emanuel et al. N Engl J Med 1994330540.)

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Summary Care for serious illness at the turn of
this century

• Unprecedented gains in life expectancy
  exponential rise in number and needs of the frail
  elderly
• Cause of death shifted from acute sudden illness
  to chronic episodic disease
• Untreated physical symptoms
• Unmet patient/family needs
• Future doctors and nurses untrained
• Fragmentation, poor coordination and an
  unresponsive health care and payment system

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How do we make it better?

• Starting with first principles
• Does our healthcare system respond to the needs
  of our sickest patients and their families?
• What are the goals of medical care?
• What should they be?

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A different kind of care

• Palliative care in hospitals aims to
• Relieve physical and emotional suffering
• Support family caregivers
• Train future health professionals
• Meet the needs of the growing population of
  elderly with complex and advanced illness
• Coordinate and rationalize care-
• the right care for the right patient at the right
  time in the right place
• Begin to make the system responsive to the
  patients it intends to serve

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Palliative Care...

• To relieve suffering, improve quality of life
• Affirms life, sees death as a personal and
  natural process
• Many diagnoses
• serious or life threatening illness
• Appropriate early in course of illness
• Patient and family preferences sought and
  respected
• Should be combined with life prolonging therapies
  or may become the focus of care near the end of
  life
• Interdisciplinary
• Psychological, spiritual, social, bereavement
  support

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Annie Jones What actually happened

• 82-year-old with hypertension, diabetes, renal
  failure osteoporosis, vision loss.
• Cycle of health crises- falls, fractures,
  pneumonia
• Hospitalized two times in 9 months
• Home with Medicare-CHHA, discharged from homecare
  after 4 weeks- new crisis- repeat
  hospitalization
• In pain, symptoms not managed- long hospital
  stay, resulting in progressive deconditioning,
  weakness, functional decline
• Not ready for hospice but in need of more support
  in hospital and ongoing transition management and
  care coordination at home

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Annie Jones What should have happened

• Palliative care consultation for
• Pain and symptom relief- facilitates success of
  rehabilitation, reduces hospital length of stay
• Patient/family discussions re needs/goals,
  advance care planning
• Home needs assessment
• Identification of on-going support services at
  home
• Plan for coordination and monitoring after home
  care skilled need terminates
• Support for gradual transition to hospice when
  illness progresses to terminal stage

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Role of the hospital-based palliative care
consultation team

• Advice and support to ward team on symptom
  control and psychosocial/existential issues
• Support to families
• Support and advice to staff
• Education of hospital staff
• Liaison between hospital and hospice/home care
  services or other institutions
• Auditing and research
• Dunlop and Hockley 1998

54
Clinical benefits of hospital-based palliative
care the evidence base

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

55
Palliative care improves quality

• Data show hospital-based palliative care
• Relieves pain and distressing symptoms
• Supports on-going re-evaluations of goals of care
  and difficult decision-making
• Improves quality of life, satisfaction for
  patients and their families
• Eases burden on providers and caregivers
• Helps patients complete life prolonging
  treatments
• Improves transition management

Campbell et al, Heart Lung, 1991 Campbell et al,
Crit Care Med, 1997 UC Davis Health System News
2002 Carr et al, Vitas Healthcare, 1995
Franklin Health, 2001 Dartmouth Atlas, 2000
Micklethwaite, 2002 Du Pen et al, J Clin Oncol,
1999 Finn et al, ASCO, 2002 Francke, Pat Educ
Couns, 2000 Advisory Board, 2001 Portenoy,
Seminars in Oncol, 1995 Ireland Cancer Center,
2002 Von Roenn et al, Ann Intern Med, 1993 Finn
J et al ASCO abstract 2002.
56
Palliative care is a cost-saving change, 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 in hospitals improves continuity
  between settings and increases hospice/homecare/nu
  rsing 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.
57
How Palliative Care Reduces Length of Stay

• Palliative care
• Clarifies goals of care with patients and
  families
• Helps families to select medical treatments that
  meets their goals
• Assists families in decisions to withhold or
  withdraw death-prolonging treatments that dont
  help to meet their goals

58
Implications of LOS Reduction

• Patients with advanced illness have a long length
  of stay and high cost/admission
• Palliative care results in
• Reduction in length of stay
• Reduction in total costs/admission
• Opportunity for new admissions
• Better quality care
• Highly satisfied families

59
6 Case studies on the clinical and financial
impact of hospital-based palliative care services

• Mount Sinai Hospital, New York City
• Kaiser Permanente, California
• St. Johns Regional Medical Center, Joplin MO
• Ireland Cancer Center and Hospice of the Western
  Reserve, Cleveland
• Virginia Commonwealth University, Richmond
• University of Michigan and Hospice of Michigan,
  Ann Arbor

60
Case 1. Clinical and Financial Impact of
Palliative Care Service at Mount Sinai Hospital

• Documentation of patient demographics
• 723 consecutive patients prospectively studied
• Recommendation and implementation rates recorded

61
Palliative Care Program Patient Characteristics
1997 2002 (N2080)

• Median Age 71.4 (range 18 to 112)
• 54 Women
• 47 White, 23 African American, 23 Latino, 7
  Other
• 64 Medicare
• Performance status at time of consult
• Moribund 18
• Very sick requiring active supportive treatment
  32
• Severely disabled 26
• Disabled requiring assistance 13
• Normal activity but requiring frequent medical
  care 11

Source Medical Records Patient/Proxy
Interviews
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Palliative Care Service Diagnoses 4/97 3/02
Source Medical Record
63
Improvement in Symptoms for 1070 Mount Sinai
Hospital Patients Followed by the Palliative Care
Service (6/97-12/01)
Severe
Pain
Nausea
Moderate
Dyspnea
Mild
None
64
Percent of Palliative Care Families Satisfied or
Very Satisfied Following Their Loved Ones Death
With

• Control of pain - 95
• Control of non-pain symptoms - 92
• Support of patients quality of life - 89
• Support for family stress/anxiety - 84
• Manner in which you were told of patients
  terminal illness - 88
• Overall care provided by palliative care program-
  95

Source Post-Discharge/Death Family Satisfaction
Interviews, Mount Sinai Hospital, New York City
65
Mount Sinai Hospital, 2001 Financial analyses
in patients who died with and without palliative
care

• Medicare data Palliative Care Patients Spent 360
  Fewer Days in Mount Sinai As Compared to
  DRG-Matched Patients Not Followed by Palliative
  Care
• Cost savings from palliative care 757,555 per
  year for patients with LOS gt 14 days

66
Fiscal impact of Mount Sinai clinical palliative
care service length of stay analyses in 2001

• 360 fewer days, gt750,000 direct costs saved
• Savings do not include income from new admissions
  allowed by increase in bed capacity
• Result hospital salary support for a doctor and
  2 nurses for the palliative care service
• Meier, D. Planning a
  hospital-based palliative care program A
  primer for institutional leaders. www.capc.org

67
Case 2. Results of Palliative Care Evaluation by
Kaiser PermanenteGarfield Memorial Fund

• Comparison trial
• Two year study, 1999-2001
• Multivariate analysis in subgroup of deceased
  patients (n300)

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Change in Satisfaction with Services
P .01
P .6
69
Kaiser Permanente Study Cancer Mean Total Costs
p.001 F15.77
Covariates days on service, severity of illness
70
Kaiser Permanente Study COPD Mean Total Costs
p.02 F6.17
Covariates days on service, severity of illness
71
Kaiser Permanente Study CHF Mean Total Costs
p.31 F1.07
Covariates days on service, severity of illness
72
Total Service Costs

• Average 6,580 (45) reduction in costs for PC
  patients
• Locus of care shifted from inpatient to home,
  result is lower costs

plt.001 F35.93
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Case 3. St. Johns Regional Medical Center,
Joplin, MOActual Direct Cost Per Patient
Analysis Before and After Palliative Care
Consultation

• Direct Cost saved per patient
• Cost Prior to Palliative Care
• Less Cost After Start of Palliative Care
• Equals Total Cost Savings

74
Annual Net Savings
Total net savings per year after program
expense 108,467

• Direct Cost Savings Converts To A Sustainable
  Program
• St. Johns Regional Med. Ctr., Joplin, MO

75
Case 4. Ireland Cancer Center and Hospice of the
Western Reserve Project Safe Conduct- RWJF
Promoting Excellence project

• Palliative care delivered simultaneous with best
  quality cancer care
• Highly significant reduction in pharmacy costs
  per day per patient (61 to 18)
• Highly significant increase in referral to
  hospice during last months of life (13 to 80)

76
Case 5. Virginia Commonwealth University
Palliative Care Unit

• Specialist run high-volume in-patient palliative
  care unit
• Comparing 2 week periods before and after
  referral, costs and charges reduced by 66
  overall
• Compared to non-palliative care control group,
  direct and total costs reduced 57.
• Smith TJ, Coyne P, Cassel B et al. A high
  volume specialist palliative care unit and team
  may reduce in-hospital end of life care costs.
  2002. Tsmith_at_hsc.vcu.edu

77
Case 6. The University of Michigan- Hospice of
Michigan RWJF Promoting Excellence
Study
Target population Advanced breast, prostate,
lung, colon, bladder, pancreatic, melanoma
cancers meeting hospice criteria Intervention
RN Palliative Care Coordinator (RN-PCC)
78
Palliative Care Trial Cost Comparison (patients
with complete data as of July 1, 2002,at
Medicare prices, excludes prescription drugs)
79
Comparison of ER Admissions, Hospital Admissions
and Hospital Days
ER
HOSPITAL
HOSPITAL
Subjects
Admissions
Admissions
Days


per pt


per pt
per pt
STUDY
26
20
.8
43
1.65
200
7.7
CONTROL
29
31
1.07
53
1.83
288
9.9
80
The Palliative Care Trial Group is Living Longer
than the Usual Care Group
81
Summary

• Hospital-based palliative care teams will play an
  essential role in improving end of life care
• Common site of death
• Universal site of medical care for seriously ill
• Important teaching setting
• Clinical evidence
• Pain and symptom burden can be reduced
• Satisfaction can be improved
• Improves quality of care for patients and their
  families

82
Summary, continued

• Educational evidence
• Positive impact on knowledge/skills/attitudes
• Palliative care is now a requirement for under-
  and postgraduate medical education
• Fiscal evidence
• Costly, prolonged hospital and ICU stays
  associated with serious illnesses that precede
  death
• Multiple studies of varied palliative care
  interventions point to cost savings

83
Hospital-based palliative care Needed and
effective

• Number of current palliative care programs over
  700
• Number of U.S. hospitals approximately 7000
• Challenge How to increase the number and
  quality of hospital-based palliative care
  programs?
• Barriers Target audience needs more convincing,
  need more professional training and capacity,
  financing for new programs

84
So, how do we get there?

• Stay tuned

85
Advice to local champions Just do it...

• Here are some important messages for anyone
  getting started Each individual program begins
  in a unique place, with a unique history and a
  unique set of people that are there, and you
  start with what youve got. The second important
  message is persistence. You have to have this
  strong vision, and work at it persistently over
  time. Over time, through some serendipity and a
  lot of perseverance by a small group of involved,
  committed people, we built an effective program.
  Also remember, its better to beg forgiveness
  than to ask permission. Its not like there was
  this giant committee in the hospital that said
  Should we have this inpatient hospice unit in
  the hospital? When you begin you just start
  doing it.
• von Gunten J Pal Med 20003115-122.