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

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
(No Transcript)
4
Life Expectancy from 1900 - 2100
Life Expectancy
Year
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
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
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
  recipients 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 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
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
• 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

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
Hospice
Bereavement Care
Therapies to prolong life
Palliative care
Interventions to relieve suffering improve
quality of life
Death
6 months
18
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

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 200856593-599.
Temel JS et al. N Engl J Med 2010363733-742.
Temel et al. J Support Oncol 20119(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
20137201-6.
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 2010363733-742.
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 2010363733-742.
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 2010363733-742.
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
• Parkinsons 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
  physicians office/clinic

31
Why Are New Delivery Models Needed?

• Difficulty establishing longitudinal
  relationships

Kamal et al. J Pain Symptom Manage 201346254-64.
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
200733486-93.
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., Alzheimers
  Association, American Parkinsons 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 201015206-217.
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 patients 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
2014157(2)106-111.
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 NPs perceived as
  way to overcome care fragmentation

Deitrick et al. Adv Nurs Science
201134(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
201412369-378.
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 200733623-7.
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
Multiple Linkages Can Enhance CBPC Provision
Health and Home Care Agencies
Social Service Agencies
Faith- Based Agencies
Palliative Care to Patient Family
Advocacy 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 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
  Association?

1Brownstein et al. Am J Prev Med 200529128-33.
2Kangovi et al JAMA Intern Med 2014Feb 10. 3AIDS
Behav 201317(9)2927-34.
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/implementi
  ng models
• Exciting time to develop, test and evaluate new
  approaches of delivering community-based
  palliative care

55
Questions Answers