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

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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 families Present rationale for why community-based models of palliative care needed Highlight examples of community-based approaches

3

4 Life Expectancy from Year Life Expectancy

5 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

6 Common Conditions Where Pain is Predominant Symptom SystemCommon disorders in later life DermatologyPressure ulcers, cellulitis, scleroderma GastrointestinalIrritable bowel disease, constipation CardiovascularAngina, advanced heart disease PulmonaryPleurisy, pneumothorax, advanced lung disease RheumatologyArthritis, gout, rheumatoid arthritis EndocrineDiabetic neuropathy RenalKidney stones, cystitis, end stage renal disease Infectious diseaseHerpes zoster, HIV/AIDs neuropathy NeurologyParkinson’s disease, post-stroke pain, headache MusculoskeletalLow back disorders, tendonitis, bursitis OncologyCancer and cancer treatments MiscellaneousSurgery, sickle cell

7 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

8 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

9 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

10 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 approaches 1 Some individuals report/express concerns about receiving too little care (under- treatment) 2 1 Lynn 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 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

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 homes Generated strong support for efforts to address problem

13 Hospice As Solution Advocated use of technology to alleviate suffering

14 Hospice Care Timeline 1960s- Cicely Saunders work with dying patients in London Saunders travels to meet with Florence Wald (Yale) St. Christopher’s opens in London First hospice opens in US (Branford, CT) Hospice benefit established Hospice benefit made permanent Over 5,000 hospice programs nationwide

15 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

16 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

17 Palliative (vs. Hospice) Care Palliative (vs. Hospice) Care Therapies to prolong life Hospice Interventions to relieve suffering & improve quality of life Bereavement Care 6 months Death Palliative care

18 Palliative Care Timeline 1980s- First inpatient palliative care program Center to Advance Palliative Care created Multiple educational programs established for medicine, nursing, social work, and chaplaincy trainees Over 1,500 inpatient palliative care programs; >85% of hospitals with 300+ beds

19 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

20 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

21 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: 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 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?

24 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) ?

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 alone PC delivered by MD or NP from hospital- based PC team Temel 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 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:

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 disease COPD Parkinson’s disease End-stage renal disease Dementia Few patients currently served using this approach; difficult to sustain financially

29 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

30 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

31 Why Are New Delivery Models Needed? Difficulty establishing longitudinal relationships Kamal 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 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

33 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

34 New Delivery Models Needed Stjernsward, Foley, Ferris J Pain Symptom Manage 2007;33:

35 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

36 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

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 sustainable Community-based participatory research one approach

38 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 through- out all phases of the project

39 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

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 NYC Identify barriers to implementing specific health programs Limited 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 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:

43 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):

44 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.

45 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:

46 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.

47 CBPC: Examples 6, 7= Community Agency/Researcher Partnership

48 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.

49 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.

50 Social Service Agencies Advocacy Organizations Faith- Based Agencies Health and Home Care Agencies Palliative Care to Patient & Family Multiple Linkages Can Enhance CBPC Provision

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 HIV 3 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? 1 Brownstein et al. Am J Prev Med 2005;29: Kangovi et al JAMA Intern Med 2014;Feb AIDS Behav 2013;17(9):

52 New Delivery Models Needed ????? ???????????? ?????????????????????

53 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

54 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 community- based palliative care

55 Questions & Answers


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