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

DeliveryDelivery

Cary Reid, MD, PhDIrving Sherwood Wright Associate Professor of Medicine

Director, Cornell Translational Research Institute on Pain in Later Life

Division of Geriatrics and Palliative MedicineWeill Cornell Medical College

AgendaAgenda

• 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 from 1900 - 2100Life Expectancy from 1900 - 2100

Year

Lif

e E

xpec

tan

cy

Consequences of Aging SocietyConsequences 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 Common Conditions Where Pain is Predominant SymptomPredominant 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 Associated Psychosocial StressorsStressors

• 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 IssuesOther 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 SocietyIssues 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 SocietyIssues 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 1995;274:1591-8. 2Phipps et al. J Clin Oncol 2003;21:549-54

Policy Responses at Societal Policy Responses at Societal LevelLevel

• Older Americans Act (1965): Initiative to provide comprehensive services for older adults; Adminis-tration 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 Death Moves from Home to HospitalHospitalIn 1900 vast majority of deaths occurred at home;

in 1960s most occurred in hospital/nursing home1960s-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 SolutionHospice As Solution

Advocated use of technology to alleviate suffering

Hospice Care TimelineHospice 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 CareEmergence 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 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) CarePalliative (vs. Hospice) Care

Therapies to prolong life

Hospice

Interventions to relieve suffering &

improve quality of life

Bereavement Care

6 months Death

Palliative care

Palliative Care TimelinePalliative 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?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 CareMilestones 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 CareOutcomes 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 Why Rapid Growth In Inpatient Setting?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 Consequences of Rapid GrowthGrowth• 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 QuestionsUnanswered 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 Trends In Palliative Care DeliveryDelivery

Temel et al. N Engl J Med 2010;363:733-742.

Trends in Palliative Care Trends in Palliative Care DeliveryDelivery

• ‘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 teamTemel JS et al. N Engl J Med 2010;363:733-742.

Temel et al. Study and Temel et al. Study and Associated Outcomes 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 Trends in Palliative Care DeliveryDelivery• 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• Parkinson’s disease• End-stage renal disease• Dementia

• Few patients currently served using this approach; difficult to sustain financially

Palliative Care Delivery Palliative Care Delivery SummarySummary

• 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 Why Are New Delivery Models Needed?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 Why Are New Delivery Models Needed?Needed?

• Difficulty establishing longitudinal relationships

Kamal et al. J Pain Symptom Manage 2013;46:254-64.

New Delivery Models NeededNew 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 NeededNew 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 NeededNew Delivery Models Needed

Stjernsward, Foley, Ferris J Pain Symptom Manage 2007;33:486-93.

Models Should Leverage Models Should Leverage Available ResourcesAvailable 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 Why Partner With Community Agencies?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 How Should Models Be Developed?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 Tenets of Community Based Participatory Research (CBPR)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 through-out all phases of the project

Key Elements of CBPR Key Elements of CBPR ApproachApproach

• 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 ToCBPR 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 What Does Community-Based Palliative Care Currently Look Palliative Care Currently Look

Like?Like?• Models vary based

on partners, setting specific needs of given community

Community-Based Palliative Community-Based Palliative Care (CBPC): Example 1Care (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 servicesHead et al Prof Case Manage 2010;15:206-217.

CBPC: Example 2CBPC: 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 3CBPC: 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 4CBPC: 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 5CBPC: 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 CBPC: Examples 6, 7= Community Agency/Researcher PartnershipAgency/Researcher Partnership

CBPC: Example 6CBPC: 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 7CBPC: 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.

Social Service

Agencies

Advocacy Organizations

Faith- Based

Agencies

Health and Home Care Agencies

Palliative Care to Patient & Family

Multiple Linkages Can Enhance CBPC ProvisionMultiple Linkages Can Enhance CBPC Provision

Other Community-Based Approaches?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 NeededNew Delivery Models Needed

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ConclusionsConclusions• 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

ConclusionsConclusions

• 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 community-based palliative care

Questions & AnswersQuestions & Answers