Palliative Care: Challenges
for an Emerging Discipline
Russell K. Portenoy, MD
Chairman and Gerald J. and Dorothy R. Friedman
Chair in Pain Medicine and Palliative Care
Department of Pain Medicine and Palliative Care
Beth Israel Medical Center
Chief Medical Officer
Continuum Hospice Care
Professor of Neurology and Anesthesiology
Albert Einstein College of Medicine
Palliative Care: Challenges
for an Emerging Discipline

Current landscape

Challenges
– For the subspecialty
– For hospital-based palliative care
– For hospice
Quality-of-Life Concerns in
Cancer Populations
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High prevalence of poorly controlled
symptoms
High prevalence of psychological
distress
High caregiver burden and financial
stress
Disparities in access and outcomes
Health care systems skewed for
treatment and acute medical
management
End-of-Life Care: Illustrative
Outcome Data
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Study: Telephone survey of family members representing
1578 decedents
Results:
– About 1/4 reported concerns with physician communication
– About 1/4 with pain or dyspnea did not receive adequate
treatment
– Insufficient emotional support reported by 1/3 of those cared
for by a home health agency, nursing home, or hospital, and
1/5 receiving home hospice
– “Treated with respect”: nursing homes 68.2%, hospitals
79.6%, Home hospice 96.2%
– Family satisfaction “excellent”: 50% of those in institutions,
70.7% receiving hospice
Teno et al, JAMA, 2004
Intensity and Cost of Treatment
for Advanced Cancer: US Trends
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Study: Analysis of 1993-1996 Medicare claims data
from 28,777 patients who died within 1 year of a
diagnosis of lung, breast, colorectal, or other
gastrointestinal cancer
Results:
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Chemo within 2 weeks of death increased from 13.8% in
1993 to 18.5% in 1996 (P <.001)
There were small but significant increases in ED visits,
hospitalizations, and ICU admissions in the last month of
life
Very short hospice admissions (3 days or less) increased
from 14.3% to 17.0% (P =.004)
Earle et al, JCO, 2004
Variation in Quality of Care
for Advanced Illness

Study: Analysis of Medicare claims data during the last 6
months of life for patients admitted to one of the 77 hospitals on
the 2001 US News and World Report "best hospitals" list

Results:
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Percentage of deaths occurring in hospital ranged from 15.9% to
55.6% (interquartile range 35.4-43.1%)
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Hospice enrollment ranged from 10.8% to 43.8% (22.0-32.0%)
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Days in hospital: from 9.4 to 27.1 (11.6-16.1)
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Days in ICU: from 1.6 to 9.5 (2.6-4.5)
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# MD visits: from 17.6 to 76.2 (25.5-39.5)
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% patients seeing >10 MDs: from 16.9% to 58.5% (29.4-43.4%)
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% deaths in ICU: from 8.4% to 36.8% (20.2-27.1%)
Wennberg JE et al, BMJ, 2004
Part of the Solution:
Palliative Care
 NQF National Framework and Preferred Practices
for Palliative and Hospice Care (adopted May 17,
2006)
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
"Palliative care means patient and family-centered that
optimizes quality of life by anticipating, preventing, and
treating suffering. Palliative care throughout the continuum
of illness involves addressing physical, intellectual,
emotional, social, and spiritual needs to facilitate patient
autonomy, access to information and choice.“
Consensus guidelines, viz., National Consensus
Project (www.nationalconsensusproject.org)
Part of the Solution:
Palliative Care
 National Cancer Institute definition
−
“palliative care (PA-lee-uh-tiv...)
Care given to improve the quality of life of patients who
have a serious or life-threatening disease. The goal of
palliative care is to prevent or treat as early as possible the
symptoms of the disease, side effects caused by treatment
of the disease, and psychological, social, and spiritual
problems related to the disease or its treatment. Also
called comfort care, supportive care, and symptom
management.”
 Some define “supportive care” in terms specific to
treatment-related effects
Part of the Solution:
Palliative Care

Best considered a therapeutic model
– Interdisciplinary
– Targeted to all types of ‘serious or lifethreatening illness’
– Relevant throughout the course of the
disease
– Unit of care is patient and family
– Emphasizes comprehensive and
continuous care
Part of the Solution:
Palliative Care

Goal of palliative care
– To prevent and manage suffering, and to
maintain quality of life, of patients with
serious or life-threatening illness, and their
families, by reducing the burden of illness
and promoting adaptation and coping
throughout the course of the disease
Part of the Solution:
Palliative Care

Domains of Quality
(www.nationalconsensusproject.org)
1. Structure and Processes of Care
2. Physical Aspects of Care
3. Psychological and Psychiatric Aspects of Care
4. Social Aspects of Care
5. Spiritual, Religious and Existential Aspects of Care
6. Cultural Aspects of Care
7. Care of the Imminently Dying Patient
8. Ethical and Legal Aspects of Care
Palliative Care:
Key Elements

Objectives
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Ongoing communication to support shared
decision making and advance care
planning with due regard for culture,
religion, and other sources of variation
Comfort through expert symptom control
Management of psychosocial and spiritual
needs
Palliative Care:
Key Elements

Objectives
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Availability of practical help in the home
Management of complex problems
associated with far advanced illness and
active dying
Support for family while caregiving and
when bereaved
Palliative Care

Key concept
– Palliative care should be considered a
best practice during routine cancer
care,
and
– Palliative care should be available at a
specialist-level for patients and families
in need of an interdisciplinary approach
involving a high level of expertise in
multiple domains
Specialist-Level Palliative
Care in the U.S.

In 2006, “Hospice and Palliative Medicine”
accepted by the American Board of Medical
Specialties as a subspecialty in
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Internal Medicine
Family Medicine
Neurology and Psychiatry
Anesthesiology
Pediatrics
Surgery
Emergency Medicine
Physical Medicine and Rehabilitation
Obstetrics and Gynecology
Radiology
Specialist-Level Palliative
Care in the U.S.

In 2006,“Hospice and Palliative Medicine”
accepted by the Accreditation Council on
Graduate Medical Education
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One year Fellowship
Program requirements accepted
Family Medicine RRC will review all applications
Pre-review by a new Committee on Hospice and
Palliative Care
– First cycle review early in 2009
– Approximately 60 programs applied and
accreditation will be retroactive to July, 2008
Systems to Deliver
Palliative Care
 In the U.S., improved access to specialistlevel palliative care requires
− Access to professionals with specialist-level
competencies
− Access to systems that support specialist
care
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Institution-based palliative care programs can
deliver specialist care in hospitals and NH’s
Hospice can deliver specialist-level palliative
care at EOL
Access to Specialists:
Challenges
 Workforce issues
– All disciplines affected
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For
For
For
For
physicians
nurses
social workers
pastoral care providers
– Concerns
 Limited number
 Inadequate training
 Regional maldistribution
Physician Workforce
Issues
 Currently too few specialists
 Most care in specialist programs
delivered by physicians with limited
training
 Fragile support for growth of the
workforce
Physician Workforce
Issues
 Issues in certification and accreditation
– Certification of specialists
 Experiential track only till 2013
 After 2013, certification possible only after oneyear training in an ACGME-accredited
Fellowship
 No identified mid-career strategy for those who
cannot take a Fellowship
 Pediatrics dilemma
Physician Workforce
Issues
 Issues in certification and accreditation
– Number of Fellowship slots
 Limited by national and institutional training caps and by
half-salary support for Fellowships
 Rules may limit academic hospices as primary training
sites
– With uncertain funding, limited number of clinicianeducators, and uncertain future demand, the
number of Fellowships may remain small and those
created will have few slots
Access to Specialists:
Challenges
 Nursing issues
– Certification available but overall shortage of
nurses and few specialists
– State-to-state variation in APN status
– Few training opportunities
Access to Specialists:
Challenges
 Social work issues
– No identified subspecialty
– Tension in job role
– Few training opportunities
 Pastoral care issues
– No identified subspecialty
– Few training opportunities
Access to Systems: HospitalBased Palliative Care
 The good news: foundations for growth
– National Quality Forum Framework
accepted
– Joint Commission interested
– Best practice defined by consensus
(www.nationalconsensusproject.org )
– Technical assistance available
(www.capc.org)
Access to Systems: HospitalBased Palliative Care
 The good news: foundations for growth
– Clear evidence of a growing recognition of
unmet need and quality imperative
 96% increase in the number of hospital-based
programs between 2000 and 2006 (American
Hospital Association)
– Emerging literature on cost savings
Access to Systems: Cost
Reduction
Before Referral
In Palliative Care Unit
Smith TJ et al. J Pall Med 2003;6(5):699-705.
Charts courtesy of J Brian Cassel, PhD, Massey Cancer Center, Virginia Commonwealth University Smith et al. J Pal Med 2003
Access to Systems: Cost
Reduction

Findings of a national program that funded 22
demonstration projects providing palliative
care services in diverse settings
– Costs of health care in the last 6 to 12 months of
life remained high, but no higher than customary
care and commensurate with the complex needs of
patients
Byock I et al. J Palliat Med. 2006;9(1):137-51.
Access to Systems: Cost
Reduction

Largest study
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Data from 8 hospitals 2002- 2004
Cost savings for those discharged alive
 $1696 per admission (P = .004)
 $279 per day (P < .001)
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Cost savings for those who died
 $4908 per admission (P = .003)
 $374 per day (P < .001)
Morrison et al, Arch Int Med, 2008
Access to Systems: HospitalBased Palliative Care
 The bad news: challenges to growth
– Large geographical variation in programs suggest
quality and economic barriers
 State-by-State report card (J Palliat Med, 2008)
– U.S. overall: Prevalence of palliative care programs across
states varies from 10% to 100%
– California and New York, like the U.S. overall, gets a ‘C’
= 41-60% of hospitals >50 beds have a palliative care
program
County-by-County Palliative
Care Programs: California
127 programs
in 225
hospitals
statewide
No programs
San Bernardino
= 4 programs
Los Angeles
County= 33
programs
Access to Systems: HospitalBased Palliative Care
 The bad news: challenges to growth
– Most of interdisciplinary team cannot generate
reimbursement for services and the business plan
for palliative care services relies on cost reductions
that may or may not materialize or be easily
measured
Access to Systems: HospitalBased Palliative Care
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The bad news: many programs struggle with
quality concerns
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Largely address inpatient issues and institutional
deaths
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Limited continuity of care
Ambulatory and home care models not yet developed
or widely available
Many with poor linkages to hospice, NHs, home care
Many programs miss key elements of an IDT
Perceived to lack focus on the psychosocial and
the spiritual, and family issues
Access to Systems: HospitalBased Palliative Care
 The bad news: challenges to growth
– In some institutions, competition among
departments, division, or services
Challenge for Hospice:
Open Access
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Hospice is a capitated managed care
benefit available as an entitlement
under Medicare and Medicaid
To survive financially, most hospices
limit enrolment and limit care
Open Access is being explored as a
means to expand the availability of
hospice services
Open Access: Definition

Hospice eligibility is determined solely
by the specific requirements in the
federal regulations, and not by the
intended plan of care
Open Access: Eligibility

Eligibility: Summary of Regulations
(42CFR418.20):
– Patient must be Medicare-eligible and patient or
representative must agree to that Part A benefits
will be turned over to the hospice.
– Physician must certify that life expectancy is <6
months if the disease runs its normal course.
– Patient or representative must acknowledge that
the treatment of the disease will be palliative and
not curative.
Open Access: Eligibility

Eligibility: Summary
– Definition of “curative” has not been
stipulated
Clearly means “a treatment that has a
reasonable likelihood of cure.”
 Probably means “a treatment that has a
reasonable likelihood of prolonging survival
beyond 6 months.”
 Never intended to mean “a treatment that is
disease-modifying, or capable of yielding
relatively brief added survival.”

Open Access: Broad Goals

Under a pure Open Access model
– Hospice patients may receive ANY
treatment unless it is likely to extend
prognosis beyond 6 months
– Hospice provides added services and
requires that the patient give up nothing
– Hospice should be seen as a program of
services and not a philosophy about
dying
Pure Open Access:
Implications
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Benefits of hospice to patients and
families may be better realized
Benefits of the hospice to hospitals may
be better realized
Benefits to the hospice may be realized
Pure Open Access:
Implications

But risks to the hospice
– Overwhelming increase in patient cost
associated with requirement to pay for all
treatments related to the terminal illness
– Care provided by hospice staff may be
outside of scope of practice
– Staff may become distracted by needs of
the acutely ill and not provide same level of
care to the imminently dying
Open Access:
Implementation Issues

Hypothesis: Cost of pure Open Access
should be possible, at least for larger
hospices
– If risk pool can be optimized
– If care can be managed like other
managed care organizations
Open Access:
Implementation Issues
OPEN
ACCESS
Managing the
Risk Pool
Real Time
Financial Data
Complex Case
Management
Open Access:
Implementation Issues

Case study: Continuum Hospice Care
– Formal policy and procedure was
developed
– Teams were in-serviced
– Procedure was piloted
Forms for data collection developed for EMR
 Informational items for staff
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Open Access:
Implementation Issues

Case study: Outcomes
– Unsustainable costs given changes in oncology
practice
– Oncologist confusion
– Admissions Team confusion
– Scope of practice concerns
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Continuum Hospice Care and other
hospices are re-thinking viability of “pure”
Open Access model
Change in payor system will be needed to
improve access
Specialist-Level
Palliative Care

What needs to happen?
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Support the growth of institution-based
palliative care programs based on welldefined guidelines and a sustainable
business model
Expand access to hospice while
enhancing hospice quality through payor
policy changes
Meet needs for workforce expansion
through programs for mid-career shift and
Fellowship training
Specialist-Level
Palliative Care

What needs to happen?
–
Create meaningful bridges between
palliative care programs and hospice
Hospice and Palliative Care:
Current Situation
Palliative Care
Programs
Bridge
Programs
Hospice
Upstream
Programs
Few Specialists in Hospice and Palliative Medicine
Palliative Care:
The Future of the Specialty
Palliative Care
Programs
Hospice
Staffing, Policies
and Procedures,
Bridge
Programs
Specialists in Hospice and Palliative Medicine