HOSPICE

1
HOSPICE
2020
True Ryndes, ANP, MPH President and CEO 2001
2

• Life teaches us to be prepared.
• Usually people think that means being
• prepared for the worst.
• Sometimes it means being prepared for
• the best.
• Doogie Hauser, MD

National Hospice Work Group
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Whos Connecting the Dots?
Fragmented Care (Human and data consequences)
Increased volume of at risk patients living
longer
Shortage of RNs and aides (resistance of nursing
to support alternative care roles)
Regulatory pressures
Telemedicine
Data burden
Family caregiver changes
Insecure funding (federal entitlements
commercial Insurance safety net service)
Congregate care issues
Labor dissatisfaction
National Hospice Work Group
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Advancing the Second Curve
FUTURE
PRESENT
B
Second Curve
A
First Curve
After Ian Morrison, The Second Curve, 1996
National Hospice Work Group
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Lessons from Other Industries

• Rail Industry
• Coca Cola
• Ensure
• Volvo
• Amazon.com

• Transportation, not trains
• Classic, lite, caff-free, Cherry
• For people too busy to eat
• Safe but unattractive to many
• Online Books to Online Anything

National Hospice Work Group
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Amazon.com

• Mission StatementTo constantly strive for
  customer ecstasy by providing an online store
  with the ability to obtain anything for them at
  the touch of a button.

National Hospice Work Group
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Medicare Benefit
Disease-modifying Therapy (curative,
restorative, palliative intent)

Hospice
Presentation
Death
6m
Bereavement
F. Ferris MD, Canadian Palliative Care Assoc.
National Hospice Work Group
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Is this really a change?
Disease-modifying Therapy (curative
restorative intent)


Hospice Care
Presentation
Death Bereavement
12 m
F. Ferris, CPCA, NHWG
National Hospice Work Group
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Aspects of a Patients Condition
Disease The pathology
Consequences The predicament and the
opportunities
Illness The patients experience of the
disease
I cant catch my breath. Im losing weight.
What if the treatments dont work? What will this
mean to my family? What do I need to do now to
get better, or close shop?
Lung cancer
National Hospice Work Group
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A New Vision of Hospice Care
Disease Modifying Care Curative, restorative,
palliative intent
Life Closure
Risk
Disease
Life Condition
Death Bereavement
Condition Modifying Care Curative, restorative,
palliative intent
After F. Ferris, CPCA model
National Hospice Work Group
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Patients illness Dying
Caregiver risk incidence Of morbidity and
mortality
T. Ryndes. The Epidemiology of Bad Dying
National Hospice Work Group
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COMMUNITY


AT RISK
ACUTE CONDITIONS

CHRONIC CONDITIONS

ANTICIPATING DEATH

DYING AND BEREAVED
POPULATIONS BENEFITING FROM HOSPICE
SERVICES
National Hospice Work Group
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• Being responsible sometimes
• means pissing people off.
• General Colin Powell

National Hospice Work Group
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If you see one hospice
you see one hospice.

• There appear to be three types of hospice
  programs emerging in the United States
• Comprehensive hospice centers
• Community hospice
• Medicare hospice

National Hospice Work Group
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HOSPICE

Traditional Hospice
Palliative Care
Palliative Consult Service
Life Transition Services
Public Service
Hospice isa health care provider, mental health
provider, volunteer organization, a spiritual
care organization, a community service, a
community charity and a community trust.
National Hospice Work Group
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HOSPICE

Traditional Hospice
Palliative Care
Palliative Consult Service
Life Transition Services
Public Service

• Professional education and research strong
  academic ties
• Involved in public engagement and mobilization of
  community resources around end of life care,
  including public policy
• Social change agent
• Community education schools, general public
• Information and referral

National Hospice Work Group
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HOSPICE

Traditional Hospice
Palliative Care
Palliative Consult Service
Life Transition Services
Public Service

• Individuals and groups office workers,
  schools, churches. Camps, retreats, emergency
  response.
• Grief counseling regardless of cause
• Caregiver education and support services
• Support to victims of violent crimes and
  catastrophic events
• Senior Care Management
• Condition Management
• Advance planning and third act counseling

National Hospice Work Group
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HOSPICE

Traditional Hospice
Palliative Care
Palliative Consult Service
Life Transition Services
Public Service

• Care provided to patient or patient/family unit
  regardless of prognosis. Episodic involvement
  by team member or team. All settings.
• Symptom management
• Counseling
• Decision support and mediation
• Ethical concerns
• Health system interpretation

National Hospice Work Group
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HOSPICE

Traditional Hospice
Palliative Care
Palliative Consult Service
Life Transition Services
Public Service

• Condition management provided to patient and
  family regardless of prognosis, across settings,
  by palliative care team. (Programs PACE, HIV,
  peds., disease state mgt.)
• Symptom management
• Counseling
• Practical care and support (CNAs, vols)
• Decision support and mediation
• Ethical concerns
• Health system interpretation

National Hospice Work Group
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HOSPICE

Traditional Hospice
Palliative Care
Palliative Consult Service
Life Transition Services
Public Service

• Condition management provided to those facing a
  limited
• prognosis, across settings, by team. Patient and
  family focus.
• All ages, including perinatal.
• Symptom management
• Coaching in aspects of life closure spiritual
  care.
• Adaptive counseling
• Practical care and support (CNAs, HMs, vols)
• Decision support and mediation
• Ethical concerns
• Health system interpretation

National Hospice Work Group
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NHWG/NHPCO Outcomes Forum

• Two studies over the past 3 years, based on
  measures associated with the NHPCO Outcomes of
  Care Comfortable Dying, Safe Dying, Self
  Determined Life Closure, Effective Grieving. N
  2000. 9 and 11 sites.
• Findings
• CD 82 comfortable within 72 hours of admission
• SD 95 of family members expressed increase in
  confidence as death approached
• SDLC 99 not wanting CPR had preference met.
  94.5 wanting to avoid hospitalization, avoided
  it.
• EG 95 acknowledged effective support in coping
  after the death

National Hospice Work Group
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HOSPICE
2020

• Who will be our patients?
• Who will provide the care?
• How will care be different?

National Hospice Work Group
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HOSPICE
2020

• Who will be our patients?
• Changing demographics
• Who will provide the care?
• How will care be different?

National Hospice Work Group
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Increased volume of at risk patients living
longer insecure funding

• According to a 1997 Congressional Budget Office
  report
• Between 2010 and 2030, the over 65 population
  will rise over 70 while under current law the
  population paying payroll taxes will rise less
  than 4

Policy Challenges Posed By the Aging of America,
Urban Institute Discussion Briefing, May
1998
National Hospice Work Group
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Who Will Our Patients Be?
Changing U.S. Age Distribution
Indicates the Baby-Boom Group
1980
1990
2000
80
80
70
70
60
60
50
50
40
40
30
30
20
20
10
10
10
5
0
5
10
10
5
0
5
10
10
5
0
5
10
Millions of Persons
Amara et. al., Looking Ahead at American Health
Care (1988)
National Hospice Work Group
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Graying of America

• 1994 2.3 million deaths in US
• 1.7 million were elderly
• 2020 2.5 million elderly will die

D. Brock and D. Foley, Demography and
Epidemiology of Dying in the US, Invited paper
1998
National Hospice Work Group
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San Diegos Population Growth is Far Outpacing
both the U.S. and California

• Today, 1 in 10 San Diegans
• is over age 65
• By 2025, it will be 1 in 5

Source US Census Bureau
San Diego Regional Chamber of Commerce San
Diegos Health Care Infrastructure in
JeopardyOctober 26, 2000
National Hospice Work Group
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Most Americans die in hospitals
Center to Advance
Palliative Care
Do They?

• National Center for Health Statistics
• 1993 National Mortality Followback Survey
  indicated the national average for in-hospital
  deaths was 56. Includes all deaths. e.g.
  vehicular and firearm accidents, alcohol and
  drug related deaths, AMIs, strokes, homicides
  and suicides.
• JD Cushman hospice penetration study, Oregon,
  1996
• In-hospital death rate 31.
• Dartmouth Atlas, 1999
• US in-hospital death rate, 1995-96, was 17.9
• Percentage of Medicare deaths, ages 65-99,
  occurring in hospitals, 1995-96 was 33.

National Hospice Work Group
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• In 1989, the site of death of the majority
  (64.1) of Americans who died of chronic
  illnesses was an acute care hospital.
• In 1997, this had decreased to 51.8. Overall,
  more persons are now dying in nursing homes and
  at home.
• About one in four persons died at home in 1997

Brown Atlas on Site of Death
National Hospice Work Group
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Graying of America
1.6 million Americans live in SNFs 90 of these
people are over the age of 65 5.3 million SNF
residents projected by 2030
National Center for Health Statistics Highlights
of Trends in the Health of Older Americans
United States, 1994, 1997 USA Today pg B1, Thurs,
Sept 30, 1999
National Hospice Work Group
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Hospice vs. nonhospice patients in SNFs

• Superior pain assessments
• Pain more likely to be detected
• More likely to be treated with pain medications
  for daily pain
• Less likely to receive painful IM or IV
  analgesics
• Fewer physical restraints
• Fewer feeding tubes
• Less parenteral/IV feeding

Synthesis and Analysis of Medicares Hospice
Benefit Executive Summary and Recommendations USDH
HS, March 2000, pg. 11
National Hospice Work Group
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Hospitalization of SNF Patients in last 30 days
of life
45
41.3
40
Patients enrolled in hospice for fewer than 30
days
35
30
(n2644)
25
20
Non-
15
12.5
hospice
10
(n7929)
5
0

Hospitalized
Susan C. Miller, PhD, MBA Preliminary Data Center
for Gerontology and Health Care Research, Brown
University
National Hospice Work Group
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Hospitalization of SNF Patients in last 30 days
of life 30 day hospice
40
38.8
35
Patients enrolled in hospice for 30 days or more
30
25
(n1648)
20
15
Non-
hospice
10
(n4944)
5
1.8
0

Hospitalized
Susan C. Miller, PhD, MBA Preliminary Data Center
for Gerontology and Health Care Research, Brown
University
National Hospice Work Group
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Hospitalization of SNF Patients in last 30 days
of life
4.5
4.4
Patients enrolled in hospice for fewer than 30
days
4
3.5
3
(n 2644)
2.5
2
Non-
1.5
hospice
1.2
1
(n 7929)
0.5
0
Hospital
Days
Susan C. Miller, PhD, MBA Preliminary Data Center
for Gerontology and Health Care Research, Brown
University
National Hospice Work Group
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Hospitalization of SNF Patients in last 30 days
of life 30 day hospice
4.5
4.2
4
3.5
Patients enrolled in hospice for 30 days or more

3
2.5
(n1648)
2
1.5
Non-hospice
1
(n4944)
0.5
.14
0
Hospital Days
Susan C. Miller, PhD, MBA Preliminary Data Center
for Gerontology and Health Care Research, Brown
University
National Hospice Work Group
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HOSPICE
2020

• Who will be our patients?
• Who will provide the care?
• Family Caregivers
• Labor availability
• New roles
• Professional unions
• Nursing Care Centers
• How will care be different?

National Hospice Work Group
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Family Caregiving

• 73 of caregivers are women.
• They devote an average of 4.5 years to care
  giving, but often ten or more.
• 15 of all caregivers and 31 of those
  providing the highest levels of care report
  significant physical and emotional stress

Family Caregiving in the US, Findings from a
National Survey National Alliance for Caregiving
and AARP, 1997
National Hospice Work Group
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Caregiver Challenges

• Those who report mental or emotional strain
  associated with the chronic stress of caregiving
  had mortality risk 63 higher than noncaregiving
  controls.

• Fewer preventive behaviors
• Decreased immunity
• Greater cv reactivity
• Slower wound healing

Schulz and Beach, The Caregiver Health Effects
Study JAMA. 1999 2822215-2219
National Hospice Work Group
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Patients illness Dying
Caregiver risk incidence Of morbidity and
mortality
T. Ryndes. The Epidemiology of Bad Dying
National Hospice Work Group
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Shortage of RNs and CNAs

• The absolute size of the RN workforce (not per
  capita) begins declining in 2012, and by 2020
  will be approximately the same size it is
  today.that is nearly 20 below requirements.

• The overall number of FTE RNs per capita will
  reach a peak in the year 2007 and will thereafter
  decline through 2020.

Buerhaus, Staiger and Auerbach Implications of an
Aging Workforce, JAMA, June 14, 2000
National Hospice Work Group
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Who Will Provide the Nursing Care?
Millions
Projections by Division of Nursing BHPr, HRSA,
USDHHS, 1996
National Hospice Work Group
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Nursing age distribution 1980-1996
Thousands
HRSA Division of Nursing National Sample Survey
of Registered Nurses, 1996
National Hospice Work Group
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California RNs

• 1999 General unemployment rate was 2.9
• Average age 46.5 years
• 90 of nurses are currently employed
• gt30 are over the age of 50
• Upswing in turnover rates
• 1997 Unemployment rate was 8.6

San Diego Union Tribune 8/31/99
National Hospice Work Group
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California RNs 2010 2020

• The state will need an additional 43,000 RNs by
  2010 to maintain the current employed RN to
  population ratio
• By 2020 an estimated additional 74,000 nurses
  will be needed.

Image, Journal of Nursing Scholarship (Vol 31, No
4,1999)
National Hospice Work Group
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Growth of Professional Unions

• Since 1991
• CNA added gt6,000 RNs in 20 facilities
• 3,000 soon to vote 7 facilities

• 1999
• ANA voted to create an entity to assist state
  nursing associations with collective bargaining

National Hospice Work Group
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Nurses Aides Crisis
1.3 million nurses aides 6.94 per hour --
average wage 93 annualized turnover
The Hazards of Elder Care Overexertion, Assault
Put Aides at High Risk for Injury by Lorraine
Adams in the Washington Post October 31, 1999
National Hospice Work Group
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Nurses Aides Crisis
333,000 more needed by 2006 2.8 million
increase in gt80 year olds Bureau of Labor
Statistics
Lorraine Adams A Caregiver Persists Despite the
Indignities Washington Post , 11-1-1999
National Hospice Work Group
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HOSPICE
2020

• Who will be our patients?
• Who will provide the care?
• How will hospice care be different?
• Expanded Services
• Senior Care Management
• (PACE)
• Telemedicine
• Nursing Care Centers

National Hospice Work Group
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Telemedicine

• Inform choices
• Referrals
• Smart cards
• Supplement and enhance home visits
• Teaching and counseling
• Consulting
• Billing
• Fund Development

National Hospice Work Group
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Telemedicine

• Pooling resources triage, on-call, continuous
  care RNs, volunteers, home health aides
• Documentation and data

National Hospice Work Group
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• It is estimated that at least 20-30 of hospice
  patients are appropriate recipients of
  telemedicine services (interdisciplinary
  assessment, emergency response, symptom
  management, inclusion of patient and family in
  team meetings, etc.).i
• Use of tele-homecare could reduce home care
  visits by 30 and cut hospital stays in halfii
• RNs can do 15-25 televisits/day. Televisits (via
  video) cost approximately 32/visit compared to
  90 for a regular visit.iii

• i Personal communication. Barry Savransky,
  Telemedicine Solutions in Healthcare.
• ii Health Partners, 1999.
• iii American Telecare, 1999.

National Hospice Work Group
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Consumer Literacy

• Thanks to a mix of an aging population, better
  and more expensive treatments and ever greater
  public awareness of health matters (via the
  internet), the National Health Service is simply
  unable to cope.

S. Pollard Britains National Health Service Is
Unable to Cope New York Times, 2/6/00
National Hospice Work Group
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Consumer Literacy

• Increased hospitalizations among those unable to
  read
• Discharge instructions
• Consent forms
• Patient education materials prescription
  bottles, med preps, etc.

• Low health literacy increases with age
• 24 of enrollees 65-69
• 70 of enrollees 85 and older

Gazmararian JA et. al., JAMA 281, 545-551 2/10/99
National Hospice Work Group
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Nursing Care Centers

• A nurse occupies the chief management position
• Nurses are the providers of preventive and
  primary services
• Depend on advance practice nurses, such as NPs

National Hospice Work Group
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Nursing Care Centers Safety Net Provider

• Proven beneficial in inner city and isolated
  rural areas
• strip malls,
• schools,
• community and recreation facilities

National Hospice Work Group
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Whos Connecting the Dots?
Fragmented Care
Increased volume of at risk patients living
longer
Shortage of RNs and aides
Regulatory pressures
Telemedicine
Data burden
Family caregiver changes
Insecure funding
Labor dissatisfaction
Congregate care issues
National Hospice Work Group
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Who do you want to connect them?
Fragmented Care
Increased volume of at risk patients living
longer
Shortage of RNs and aides
Regulatory pressures
Telemedicine
Data burden
Family caregiver changes
Insecure funding
Labor dissatisfaction
Congregate care issues
National Hospice Work Group
58

• Activists are not anarchists. They are, instead,
  the loyal opposition. Their goal is to create a
  movement within their company and a revolution
  outside it.

Gary Hamel, Leading the Revolution