Community-Based Palliative Care:
Need for New Models of Service
Delivery
Cary Reid, MD, PhD
Irving Sherwood Wright Associate Professor of Medicine
Director, Cornell Translational Research Institute on Pain
in Later Life
Division of Geriatrics and Palliative Medicine
Weill Cornell Medical College
Agenda
• Describe key issues related to aging demographic
• Review emergence of palliative care to address
needs of individuals with advanced chronic
illness and families
• Present rationale for why community-based
models of palliative care needed
• Highlight examples of community-based
approaches
Life Expectancy
Life Expectancy from 1900 - 2100
Year
Consequences of Aging Society
• 50% of those ages 70 and older will experience
2 or more chronic conditions
• High symptom burden (independent of disease)
• Pain, loss of energy, difficulty concentrating
• Sleep disturbance, appetite problems, depressed mood
• ↓ Functional status
• ↑ Disability: those reaching 65 can expect to
spend on average 8 years (12%) of life span living
with one or more disabilities
• ↑ Healthcare costs
Common Conditions Where Pain is
Predominant Symptom
System
Common disorders in later life
Dermatology
Pressure ulcers, cellulitis, scleroderma
Gastrointestinal
Irritable bowel disease, constipation
Cardiovascular
Angina, advanced heart disease
Pulmonary
Pleurisy, pneumothorax, advanced lung disease
Rheumatology
Arthritis, gout, rheumatoid arthritis
Endocrine
Diabetic neuropathy
Renal
Kidney stones, cystitis, end stage renal disease
Infectious disease
Herpes zoster, HIV/AIDs neuropathy
Neurology
Parkinson’s disease, post-stroke pain, headache
Musculoskeletal
Low back disorders, tendonitis, bursitis
Oncology
Cancer and cancer treatments
Miscellaneous
Surgery, sickle cell
Associated Psychosocial Stressors
• Difficulty finding meaningful role(s) to fill
• Multiple losses (spouse, colleagues, friends)
• Social isolation
• Financial worries/concerns: “Never thought
I would live this long”
• Threats to independence
Other Life Course Issues
• Religious/spiritual/existential needs
• How to overcome fears about uncertain
future?
• How to find meaning/hope?
• How to obtain forgiveness?
• For some, addressing feeling of being
abandoned by God
Issues Related to Aging Society
• In 2009, 62 million individuals reported
caregiving responsibilities
• Prone to physical and psychological
problems
• Increased risk for social isolation
• Needs often equal to or greater than
care recipient’s needs
• Can also lead to beneficial outcomes
Issues Related to Aging Society
• Many patients receive care that is not
consonant with their values/preferences
• Aggressive care often delivered when
individuals desire comfort approaches1
• Some individuals report/express concerns
about receiving too little care (undertreatment)2
1Lynn
et al JAMA 1995;274:1591-8. 2Phipps et al. J Clin Oncol
2003;21:549-54
Policy Responses at Societal Level
• Older Americans Act (1965): Initiative to provide
comprehensive services for older adults; Administration on Aging established at federal level
• Support services to promote maintenance of independence
• Nutrition programs, e.g., congregate & home delivered meals
• National Family Caregiver Support program
• Medicare (1966) guarantees access to health
insurance for Americans over 65; Medicaid as well
• Medicare Part D (2003) subsidizes costs of
prescription drugs
Death Moves from Home to Hospital
In 1900 vast majority of deaths occurred at home;
in 1960s most occurred in hospital/nursing home
1960s-1970s: Multiple reports documenting poor
conditions/inadequate care of dying patients in
hospital/nursing homes
Generated strong support for efforts to address problem
Hospice As Solution
Advocated use of technology to alleviate suffering
Hospice Care Timeline
• 1960s- Cicely Saunders work with dying patients
in London
• 1966- Saunders travels to meet with Florence
Wald (Yale)
• 1967- St. Christopher’s opens in London
• 1974- First hospice opens in US (Branford, CT)
• 1982- Hospice benefit established
• 1986- Hospice benefit made permanent
• 2012- Over 5,000 hospice programs nationwide
Emergence of Palliative Care
• Rapidly growing segment of medical
care system, drivers include….
• Aging society
• Problem of multi-morbidity
• High unmet needs in those not
eligible to receive hospice care
• Palliative care adopted core tenets
from hospice movement
Palliative & Hospice Care
• Both strive to relieve suffering and improve
quality of life by:
• Addressing symptom burden aggressively
• Tending to spiritual/religious/existential needs
• Addressing needs of patients & families
• Ensuring care is consonant with preferences &
values of patient
• Palliative care appropriate for patients seeking
curative & life-prolonging interventions
Palliative (vs. Hospice) Care
Hospice
Therapies to prolong life
Bereavement
Care
Palliative care
Interventions to relieve
6 months Death
suffering & improve
quality of life
Palliative Care Timeline
• 1980s- First inpatient palliative care program
• 1999- Center to Advance Palliative Care
created
• 2000-2010- Multiple educational programs
established for medicine, nursing, social work,
and chaplaincy trainees
• 2014- Over 1,500 inpatient palliative care
programs; >85% of hospitals with 300+ beds
Who Delivers Palliative Care?
• Interdisciplinary team based care in
hospital setting by
• Nursing, social work, chaplaincy, & medical
provider(s) with requisite skills in
• Physical, social, psychological, spiritual,
and legal aspects of medical care
Milestones in Palliative Care
• Palliative nursing certification in 2002
(American Board of Nursing Specialties)
• Consensus quality guidelines in 2006 (Framework &
Preferred Practices for Palliative and Hospice Care
Quality)
• Recognized as subspecialty in 2008 by American
Board of Medical Specialties
• Certification program in palliative care for hospitals
by Joint Commission in 2011
Outcomes of Palliative Care
• Enhanced patient quality of life
• Improved levels of patient & family
satisfaction
• Improved symptom management
• Reduced hospital costs
Casarett et al J Am Geriatr Soc 2008;56:593-599. Temel JS et al. N Engl J
Med 2010;363:733-742. Temel et al. J Support Oncol 2011;9(3):8794.
Why Rapid Growth In
Inpatient Setting?
• Availability of providers with requisite skills
(MDs, RNs, SWs, chaplains, & volunteers)
• Significant needs of hospitalized patients
with advanced chronic illness (e.g, high
symptom burden, other unmet needs)
• Demonstrated cost savings to hospitals (and
help gaining market share)
Morrison RS. Curr Opn Support Palliat Care 2013;7:201-6.
Consequences of Rapid Growth
• Lack of rigorous evidence base to guide
management & policy decisions
• Many challenges to studying vulnerable
populations
• Insufficient research funding
• Model perpetuates segmented care
• Little incentive for non-palliative care
physicians to deliver this type of care
• Patient/family level: Impact of “yin-yang”
delivery approach?
Unanswered Questions
• What components of multi-component
intervention most effective?
• More evidence supporting improvement in positive
caregiver outcomes needed
• Are certain models of delivery more effective than
others or most appropriate in a given setting?
• Is hospitalization best time to introduce PC
to patients/families (at time of
decompensated illness) ?
Trends In Palliative Care Delivery
Temel et al. N Engl J Med 2010;363:733-742.
Trends in Palliative Care Delivery
• ‘Early’ palliative care delivery in outpatient
setting (e.g., time of initial diagnosis)
• Randomized 151 patients recently
diagnosed with advanced non-small cell
lung cancer to:
• Standard oncologic care + PC vs. standard
oncologic care alone
• PC delivered by MD or NP from hospitalbased PC team
Temel JS et al. N Engl J Med 2010;363:733-742.
Temel et al. Study and
Associated Outcomes
• Initial assessment at study enrollment then met
with patient/family every 4 weeks; intervention
components:
• Assessed for physical & psychosocial needs
• Helped establish goals of care
• Assisted patients with decision making when
appropriate
• Care coordination
• ↑ QOL, ↓ depressive symptoms, less aggressive
care, ↑ survival (by about 2 months)
Temel JS et al. N Engl J Med 2010;363:733-742.
Trends in Palliative Care Delivery
• Develop PC programs for use in outpatient and
other settings (e.g., emergency rooms)
• Programs targeting patients with specific noncancer diseases:
• Advanced heart disease
•
•
•
•
COPD
Parkinson’s disease
End-stage renal disease
Dementia
• Few patients currently served using this
approach; difficult to sustain financially
Palliative Care Delivery Summary
• Rapid program diffusion in large U.S. hospitals
• Employ interdisciplinary team-based approach
• Training programs for diverse provider groups
(building a workforce)
• Current healthcare-based delivery approaches
necessary but insufficient to meet growing
palliative care needs of aging population
Why Are New Delivery Models Needed?
• Limited reach of hospital/outpatient programs
• Problem of referral filter (800 consults/yr at NYPH)
• Most adults with advanced chronic illness not
hospitalized (incidence rate 253/1,000)
• Stigma issues (palliative care = hospice care)
• Distrust of medical system
• Access issues
• Insurance problems
• Physical barriers make it difficult to get to
physician’s office/clinic
Why Are New Delivery Models Needed?
• Difficulty establishing longitudinal relationships
Kamal et al. J Pain Symptom Manage 2013;46:254-64.
New Delivery Models Needed
• Maximizing reach of PC will require new
models & approaches that are community
based
• Multidisciplinary team based approach not
practical for use in community (not cost
effective under current reimbursement
model)
• Ecologic approaches needed that incorporate
values/preferences of local stakeholder
groups
New Delivery Models Needed
• Medical expertise/knowledge NOT NEEDED to
• Provide support to patients with advanced
chronic illness & families
• Address spiritual/existential needs
• Coordinate care
• Help patients receive care consonant with
their values and preferences
• Helpful and frequently necessary when
managing burdensome symptoms
New Delivery Models Needed
Stjernsward, Foley, Ferris J Pain Symptom Manage 2007;33:486-93.
Models Should Leverage
Available Resources
• Community-based agencies provide services to
many populations with high palliative care needs
• Established longitudinal relationships
• Social service agencies (e.g., case management,
senior centers, adult day care)
• Faith-based organizations (e.g., churches,
synagogues)
• Advocacy organizations (e.g., Alzheimer’s
Association, American Parkinson’s Disease Assoc)
• Home care agencies
Why Partner With Community
Agencies?
• Established trust with clients, parishioners, patients
families
• Missions consonant with palliative care:
• Enhance quality of life of individuals & families
• Ensure dignity of the individual
• Minimize risk for institutionalization
• Most care not provided by healthcare system but
informal (and formal care) delivered at home
• If reimbursement aspects of healthcare reform
occur, focus will be on prevention of hospitalization
How Should Models
Be Developed?
• Strongly endorse forming partnerships
with community stakeholders to include
end users (patients/families)
• Maximize chance of building programs
that are relevant and sustainable
• Community-based participatory research
one approach
Tenets of Community Based
Participatory Research (CBPR)
• Recognizes community as unit of identity
• May be defined geographic area or individuals with
shared problem or interest in problem
• Builds on strengths, resources, expertise in
given community
• Facilitates collaborative partnerships throughout all phases of the project
Key Elements of CBPR Approach
• Integrates knowledge and action for mutual benefit
of all partners
• Promotes co-learning throughout all phases of
project
• Emphasizes dissemination of findings to community
to effect change
• Both palliative care and CBPR agree on importance of
• Forming interdisciplinary partnerships
• Integrating perspectives of multiple stakeholders
• Upholding dignity of individuals affected by given
issue/problem
CBPR Employed To
• Enhance self-management strategies
• Improve screening rates for important
diseases (breast, colon cancer)
• Enhance awareness of specific health
problems (e.g., asthma)
• Disseminate pain programs in NYC
• Identify barriers to implementing specific
health programs
• Limited use in developing PC models
What Does Community-Based
Palliative Care Currently Look Like?
• Models vary based
on partners, setting
specific needs of
given community
Community-Based Palliative
Care (CBPC): Example 1
• Managed care provider providing Medicaid managed
care + Kentucky based palliative care team:
• Developed curriculum and trained case managers in PC
• Brought in PC-trained RN & social worker as consultants
• Developed/implemented tool to identify appropriate
patients for PC
• Developed reference manual for case managers
• Program feasible to implement; improved symptom
management of clients receiving PC services
Head et al Prof Case Manage 2010;15:206-217.
CBPC: Example 2
• Local health system & Area on Aging Agency in
charge of Medicaid waivers program worked to
develop CBPC intervention
• Case managers conducted PC needs assessment,
findings discussed with PC team; plan developed and
discussed with patient and family, recommendations
sent to patient’s primary physician
• Subsequent visits made (or contact by phone monthly)
for coaching and determining adherence with plan
• Found to be feasible to implement, well liked by
case managers and clients
Radwany et al. Pop Health Manage 2014;157(2):106-111.
CBPC: Example 3
• Health network in rural Pennsylvania
teamed with PC consultative service to
provide home-based PC services provided
by NPs
• Qualitative results from NP interviews
revealed high satisfaction with program;
NP’s perceived as way to overcome care
fragmentation
Deitrick et al. Adv Nurs Science 2011;34(4):E23-36.
CBPC: Example 4
• Boston-based collaborative conducted community
needs assessment targeting individuals living in
inner city communities living with chronic illness to
identify PC needs
• Employed CBPR approach to develop PC model to
be delivered by social worker/nurse; components:
• Intervention components: education, coping skills,
community resources, help client identify future
goals
• Plan is for feasibility testing
Kaiser et al. Pall Supportive Care 2014;12:369-378.
CBPC: Example 5
• Training program of volunteers from communities
in rural India to identify individuals with palliative
care needs
• 16 hours of training on diverse topics: assessing for
psychosocial problems in those with chronic illness;
education in basic nursing care; use of role plays
• Teams employed for case finding and providing
support/monitoring of identified individuals
• Teams supported by MD/RN teams
Kumar et al J Pain Symptom Manage 2007;33:623-7.
CBPC: Examples 6, 7= Community
Agency/Researcher Partnership
CBPC: Example 6
• Developed PC educational curriculum for case
managers providing case management services to
frail older adults in New York City
• Two half-day training sessions, then bi-monthly
sessions to reinforce information, provide
additional training on PC, problem solve around
applying PC principles in practice
• Case managers found training highly useful;
knowledge gains documented; led to enhanced
knowledge about which clients should receive PC
Project funded by Fan Fox and Samuels Foundation.
CBPC: Example 7
• Conduced community-based palliative care needs
assessment in East and Central Harlem
• Residents endorsed high (unmet) PC needs
• Community agencies highly willing to partner to
address problem of limited PC delivery
• Created community advisory board composed of
diverse stakeholder groups to help develop
community-informed PC delivery model
• Planned approaches: Educational initiatives
targeting individuals, providers in social service
agencies and faith-based organizations
Project funded by Fan Fox and Samuels Foundation.
Multiple Linkages Can Enhance CBPC Provision
Health and
Home Care
Agencies
Social
Service
Agencies
Palliative Care to
Patient & Family
Advocacy
Organizations
FaithBased
Agencies
Other Community-Based Approaches?
• Use of community-health workers?
• Successful at improving chronic disease management,1
decreasing readmission rates,2 improving outcomes
among those with HIV3
• Community pharmacist involvement?
• Using lay health educators in faith-based
communities to deliver PC education and training?
• Augmenting existing caregiver training programs?
• Home attendant training by Alzheimer’s Association?
1Brownstein
et al. Am J Prev Med 2005;29:128-33. 2Kangovi et al
JAMA Intern Med 2014;Feb 10. 3AIDS Behav 2013;17(9):2927-34.
New Delivery Models Needed
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Conclusions
• Impressive growth of palliative care programs
over past 3 decades, almost entirely hospital
based
• Community-based models can help to extend
reach, particularly to populations not well served
by healthcare system
• Community agencies share similar goals with
healthcare agencies, AND……
• Have client trust and resources to assist in
developing & implementing palliative care
programs in community settings
Conclusions
• Community-based models being
developed; work remains in early phases
• Use of community based participatory
approach offers several advantages when
creating/implementing models
• Exciting time to develop, test and evaluate
new approaches of delivering communitybased palliative care
Questions & Answers