Presentation on theme: "Community-Based Palliative Care: Need for New Models of Service Delivery Cary Reid, MD, PhD Irving Sherwood Wright Associate Professor of Medicine Director,"— Presentation transcript:
1 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
2 Agenda Describe key issues related to aging demographic Review emergence of palliative care to address needs of individuals with advanced chronic illness and familiesPresent rationale for why community-based models of palliative care neededHighlight examples of community-based approaches
5 Consequences of Aging Society 50% of those ages 70 and older will experience 2 or more chronic conditionsHigh symptom burden (independent of disease)Pain, loss of energy, difficulty concentratingSleep 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
6 Common Conditions Where Pain is Predominant Symptom SystemCommon disorders in later lifeDermatologyPressure ulcers, cellulitis, sclerodermaGastrointestinalIrritable bowel disease, constipationCardiovascularAngina, advanced heart diseasePulmonaryPleurisy, pneumothorax, advanced lung diseaseRheumatologyArthritis, gout, rheumatoid arthritisEndocrineDiabetic neuropathyRenalKidney stones, cystitis, end stage renal diseaseInfectious diseaseHerpes zoster, HIV/AIDs neuropathyNeurologyParkinson’s disease, post-stroke pain, headacheMusculoskeletalLow back disorders, tendonitis, bursitisOncologyCancer and cancer treatmentsMiscellaneousSurgery, sickle cell
7 Associated Psychosocial Stressors Difficulty finding meaningful role(s) to fillMultiple losses (spouse, colleagues, friends)Social isolationFinancial worries/concerns: “Never thought I would live this long”Threats to independence
8 Other Life Course Issues Religious/spiritual/existential needsHow to overcome fears about uncertain future?How to find meaning/hope?How to obtain forgiveness?For some, addressing feeling of being abandoned by God
9 Issues Related to Aging Society In 2009, 62 million individuals reported caregiving responsibilitiesProne to physical and psychological problemsIncreased risk for social isolationNeeds often equal to or greater than care recipient’s needsCan also lead to beneficial outcomes
10 Issues Related to Aging Society Many patients receive care that is not consonant with their values/preferencesAggressive care often delivered when individuals desire comfort approaches1Some individuals report/express concerns about receiving too little care (under-treatment)21Lynn et al JAMA 1995;274: Phipps et al. J Clin Oncol 2003;21:549-54
11 Policy Responses at Societal Level Older Americans Act (1965): Initiative to provide comprehensive services for older adults; Adminis-tration on Aging established at federal levelSupport services to promote maintenance of independenceNutrition programs, e.g., congregate & home delivered mealsNational Family Caregiver Support programMedicare (1966) guarantees access to health insurance for Americans over 65; Medicaid as wellMedicare Part D (2003) subsidizes costs of prescription drugs
12 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 homesGenerated strong support for efforts to address problem
13 Advocated use of technology to alleviate suffering Hospice As SolutionAdvocated use of technology to alleviate suffering
14 Hospice Care Timeline1960s- Cicely Saunders work with dying patients in LondonSaunders travels to meet with Florence Wald (Yale)1967- St. Christopher’s opens in London1974- First hospice opens in US (Branford, CT)1982- Hospice benefit established1986- Hospice benefit made permanent2012- Over 5,000 hospice programs nationwide
15 Emergence of Palliative Care Rapidly growing segment of medical care system, drivers include….Aging societyProblem of multi-morbidityHigh unmet needs in those not eligible to receive hospice carePalliative care adopted core tenets from hospice movement
16 Palliative & Hospice Care Both strive to relieve suffering and improve quality of life by:Addressing symptom burden aggressivelyTending to spiritual/religious/existential needsAddressing needs of patients & familiesEnsuring care is consonant with preferences & values of patientPalliative care appropriate for patients seeking curative & life-prolonging interventions
17 Palliative (vs. Hospice) Care Bereavement CareTherapies to prolong lifePalliative careInterventions to relieve suffering & improve quality of life6 monthsDeath
18 Palliative Care Timeline 1980s- First inpatient palliative care programCenter to Advance Palliative Care createdMultiple educational programs established for medicine, nursing, social work, and chaplaincy traineesOver 1,500 inpatient palliative care programs; >85% of hospitals with 300+ beds
19 Who Delivers Palliative Care? Interdisciplinary team based care in hospital setting byNursing, social work, chaplaincy, & medical provider(s) with requisite skills inPhysical, social, psychological, spiritual, and legal aspects of medical care
20 Milestones in Palliative Care Palliative nursing certification in (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 SpecialtiesCertification program in palliative care for hospitals by Joint Commission in 2011
21 Outcomes of Palliative Care Enhanced patient quality of lifeImproved levels of patient & family satisfactionImproved symptom managementReduced hospital costsCasarett et al J Am Geriatr Soc 2008;56: Temel JS et al. N Engl J Med 2010;363: Temel et al. J Support Oncol 2011;9(3):8794.
22 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.
23 Consequences of Rapid Growth Lack of rigorous evidence base to guide management & policy decisionsMany challenges to studying vulnerable populationsInsufficient research fundingModel perpetuates segmented careLittle incentive for non-palliative care physicians to deliver this type of carePatient/family level: Impact of “yin-yang” delivery approach?
24 Unanswered QuestionsWhat components of multi-component intervention most effective?More evidence supporting improvement in positive caregiver outcomes neededAre 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) ?
25 Trends In Palliative Care Delivery Temel et al. N Engl J Med 2010;363:
26 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 alonePC delivered by MD or NP from hospital-based PC teamTemel JS et al. N Engl J Med 2010;363:
27 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 needsHelped establish goals of careAssisted patients with decision making when appropriateCare coordination↑ QOL, ↓ depressive symptoms, less aggressive care, ↑ survival (by about 2 months)Temel JS et al. N Engl J Med 2010;363:
28 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 diseaseCOPDParkinson’s diseaseEnd-stage renal diseaseDementiaFew patients currently served using this approach; difficult to sustain financially
29 Palliative Care Delivery Summary Rapid program diffusion in large U.S. hospitalsEmploy interdisciplinary team-based approachTraining 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
30 Why Are New Delivery Models Needed? Limited reach of hospital/outpatient programsProblem 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 systemAccess issuesInsurance problemsPhysical barriers make it difficult to get to physician’s office/clinic
31 Why Are New Delivery Models Needed? Difficulty establishing longitudinal relationshipsKamal et al. J Pain Symptom Manage 2013;46:
32 New Delivery Models Needed Maximizing reach of PC will require new models & approaches that are community basedMultidisciplinary 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
33 New Delivery Models Needed Medical expertise/knowledge NOT NEEDED toProvide support to patients with advanced chronic illness & familiesAddress spiritual/existential needsCoordinate careHelp patients receive care consonant with their values and preferencesHelpful and frequently necessary when managing burdensome symptoms
35 Models Should Leverage Available Resources Community-based agencies provide services to many populations with high palliative care needsEstablished longitudinal relationshipsSocial 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
36 Why Partner With Community Agencies? Established trust with clients, parishioners, patients familiesMissions consonant with palliative care:Enhance quality of life of individuals & familiesEnsure dignity of the individualMinimize risk for institutionalizationMost care not provided by healthcare system but informal (and formal care) delivered at homeIf reimbursement aspects of healthcare reform occur, focus will be on prevention of hospitalization
37 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 sustainableCommunity-based participatory research one approach
38 Tenets of Community Based Participatory Research (CBPR) Recognizes community as unit of identityMay be defined geographic area or individuals with shared problem or interest in problemBuilds on strengths, resources, expertise in given communityFacilitates collaborative partnerships through-out all phases of the project
39 Key Elements of CBPR Approach Integrates knowledge and action for mutual benefit of all partnersPromotes co-learning throughout all phases of projectEmphasizes dissemination of findings to community to effect changeBoth palliative care and CBPR agree on importance ofForming interdisciplinary partnershipsIntegrating perspectives of multiple stakeholdersUpholding dignity of individuals affected by given issue/problem
40 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 NYCIdentify barriers to implementing specific health programsLimited use in developing PC models
41 What Does Community-Based Palliative Care Currently Look Like? Models vary based on partners, setting specific needs of given community
42 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 PCBrought in PC-trained RN & social worker as consultantsDeveloped/implemented tool to identify appropriate patients for PCDeveloped reference manual for case managersProgram feasible to implement; improved symptom management of clients receiving PC servicesHead et al Prof Case Manage 2010;15:
43 CBPC: Example 2Local health system & Area on Aging Agency in charge of Medicaid waivers program worked to develop CBPC interventionCase managers conducted PC needs assessment, findings discussed with PC team; plan developed and discussed with patient and family, recommendations sent to patient’s primary physicianSubsequent visits made (or contact by phone monthly) for coaching and determining adherence with planFound to be feasible to implement, well liked by case managers and clientsRadwany et al. Pop Health Manage 2014;157(2):
44 CBPC: Example 3Health network in rural Pennsylvania teamed with PC consultative service to provide home-based PC services provided by NPsQualitative results from NP interviews revealed high satisfaction with program; NP’s perceived as way to overcome care fragmentationDeitrick et al. Adv Nurs Science 2011;34(4):E23-36.
45 CBPC: Example 4Boston-based collaborative conducted community needs assessment targeting individuals living in inner city communities living with chronic illness to identify PC needsEmployed 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 goalsPlan is for feasibility testingKaiser et al. Pall Supportive Care 2014;12:
46 CBPC: Example 5Training program of volunteers from communities in rural India to identify individuals with palliative care needs16 hours of training on diverse topics: assessing for psychosocial problems in those with chronic illness; education in basic nursing care; use of role playsTeams employed for case finding and providing support/monitoring of identified individualsTeams supported by MD/RN teamsKumar et al J Pain Symptom Manage 2007;33:623-7.
47 CBPC: Examples 6, 7= Community Agency/Researcher Partnership
48 CBPC: Example 6Developed PC educational curriculum for case managers providing case management services to frail older adults in New York CityTwo half-day training sessions, then bi-monthly sessions to reinforce information, provide additional training on PC, problem solve around applying PC principles in practiceCase managers found training highly useful; knowledge gains documented; led to enhanced knowledge about which clients should receive PCProject funded by Fan Fox and Samuels Foundation.
49 CBPC: Example 7Conduced community-based palliative care needs assessment in East and Central HarlemResidents endorsed high (unmet) PC needsCommunity agencies highly willing to partner to address problem of limited PC deliveryCreated community advisory board composed of diverse stakeholder groups to help develop community-informed PC delivery modelPlanned approaches: Educational initiatives targeting individuals, providers in social service agencies and faith-based organizationsProject funded by Fan Fox and Samuels Foundation.
50 Multiple Linkages Can Enhance CBPC Provision Health and Home Care AgenciesSocial Service AgenciesFaith- Based AgenciesPalliative Care to Patient & FamilyAdvocacy Organizations
51 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 HIV3Community 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: Kangovi et al JAMA Intern Med 2014;Feb 10. 3AIDS Behav 2013;17(9):
52 New Delivery Models Needed ??????????????????????????????????????
53 ConclusionsImpressive growth of palliative care programs over past 3 decades, almost entirely hospital basedCommunity-based models can help to extend reach, particularly to populations not well served by healthcare systemCommunity agencies share similar goals with healthcare agencies, AND……Have client trust and resources to assist in developing & implementing palliative care programs in community settings
54 ConclusionsCommunity-based models being developed; work remains in early phasesUse of community based participatory approach offers several advantages when creating/implementing modelsExciting time to develop, test and evaluate new approaches of delivering community-based palliative care