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Community-Based Palliative Care: Need for New Models of Service Delivery


Community-Based Palliative Care: Need for New Models of Service Delivery Cary Reid, MD, PhD Irving Sherwood Wright Associate Professor of Medicine – PowerPoint PPT presentation

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Title: Community-Based Palliative Care: Need for New Models of Service Delivery

Community-Based Palliative Care Need for New
Models of Service Delivery
  • Cary Reid, MD, PhD
  • Irving Sherwood Wright Associate Professor of
  • Director, Cornell Translational Research
    Institute on Pain in Later Life
  • Division of Geriatrics and Palliative Medicine
  • Weill Cornell Medical College

  • 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

(No Transcript)
Life Expectancy from 1900 - 2100
Life Expectancy
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
  • ? 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
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 Parkinsons 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
    recipients 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 (under-treatment)2

1Lynn et al JAMA 19952741591-8. 2Phipps et al.
J Clin Oncol 200321549-54
Policy Responses at Societal Level
  • Older Americans Act (1965) Initiative to provide
    comprehensive services for older adults
    Adminis-tration on Aging established at federal
  • Support services to promote maintenance of
  • 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
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. Christophers 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

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
Bereavement Care
Therapies to prolong life
Palliative care
Interventions to relieve suffering improve
quality of life
6 months
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 gt85 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 200856593-599.
Temel JS et al. N Engl J Med 2010363733-742.
Temel et al. J Support Oncol 20119(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
Consequences of Rapid Growth
  • Lack of rigorous evidence base to guide
    management policy decisions
  • Many challenges to studying vulnerable
  • 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
  • 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 2010363733-742.
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 hospital-based PC

Temel JS et al. N Engl J Med 2010363733-742.
Temel et al. Study and Associated Outcomes
  • Initial assessment at study enrollment then met
    with patient/family every 4 weeks intervention
  • Assessed for physical psychosocial needs
  • Helped establish goals of care
  • Assisted patients with decision making when
  • Care coordination
  • ? QOL, ? depressive symptoms, less aggressive
    care, ? survival (by about 2 months)

Temel JS et al. N Engl J Med 2010363733-742.
Trends in Palliative Care Delivery
  • Develop PC programs for use in outpatient and
    other settings (e.g., emergency rooms)
  • Programs targeting patients with specific
    non-cancer diseases
  • Advanced heart disease
  • COPD
  • Parkinsons 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
  • 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
    physicians office/clinic

Why Are New Delivery Models Needed?
  • Difficulty establishing longitudinal

Kamal et al. J Pain Symptom Manage 201346254-64.
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
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,
  • Advocacy organizations (e.g., Alzheimers
    Association, American Parkinsons 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

How Should Models Be Developed?
  • Strongly endorse forming partnerships with
    community stakeholders to include end users
  • Maximize chance of building programs that are
    relevant and sustainable
  • Community-based participatory research one

Tenets of Community Based Participatory Research
  • 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
    through-out 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
  • Emphasizes dissemination of findings to community
    to effect change
  • Both palliative care and CBPR agree on importance
  • 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
  • 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
  • Brought in PC-trained RN social worker as
  • 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 201015206-217.
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 patients primary
  • 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
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 NPs perceived as
    way to overcome care fragmentation

Deitrick et al. Adv Nurs Science
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
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 200733623-7.
CBPC Examples 6, 7 Community Agency/Researcher
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
Faith- Based Agencies
Palliative Care to Patient Family
Advocacy Organizations
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 Alzheimers

1Brownstein et al. Am J Prev Med 200529128-33.
2Kangovi et al JAMA Intern Med 2014Feb 10. 3AIDS
Behav 201317(9)2927-34.
New Delivery Models Needed
  • Impressive growth of palliative care programs
    over past 3 decades, almost entirely hospital
  • 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

  • Community-based models being developed work
    remains in early phases
  • Use of community based participatory approach
    offers several advantages when creating/implementi
    ng models
  • Exciting time to develop, test and evaluate new
    approaches of delivering community-based
    palliative care

Questions Answers