ADVANCE CARE PLANNING AND PALLIATIVE CARE FOR PEOPLE WITH DISABILITY

1. ADVANCE CARE PLANNING AND PALLIATIVE CARE FOR PEOPLEWITH DISABILITY GARY L. STEIN, JD, MSW Associate Professor Wurzweiler School of Social Work Yeshiva University New York, NY

2. AIMS OF DISCUSSION • Promote better planning for serious illness among people with disability • Assure that individual concerns & needs are addressed • Promote access to hospice & palliative care • Better inform end-of-life policy & practice • Integrate community concerns

3. PUBLICATIONS Stein, G.L. (2008). Providing Palliative Care to People with Intellectual Disabilities: Services, Staff Knowledge, and Challenges. Journal of Palliative Medicine, 11(9), 1241-1248. Stein, G.L. & Kerwin, J. (2010). Disability Perspectives on Health Care Planning and Decision-Making. Journal of Palliative Medicine, 13(9), In publication.

4. THE STRUGGLE • Writings of persons with disabilities evince profound struggle for respect, humanity & access to care.

5. THE STRUGGLE “The peculiar drama of my life has placed me in a world that by and large thinks it would be better if people like me did not exist. My fight has been for accommodation, the world to me and me to the world. As a disability pariah, I must struggle for a place, for kinship, for community, for connection …. I am still seeking acceptance of my humanity.” • Harriet McBryde Johnson, The New York Times Magazine, 2/16/03

6. USAGE • Intellectual Disability • People with cognitive limitations, primarily resulting from mental retardation • Onset at birth or early in life • Physical Disability • Individuals with irreversible, serious orthopedic & mobility impairments • Acquired during childhood, adolescence, or as younger adult • Aim to assure that unique perspectives of previously overlooked individuals are addressed • Substantial prior research on ACP for people with chronic illness & age-related medical impairment

7. PRINCIPLES • Framework for advance care planning applies equally to all • Even those with limited decisional capacity should be encouraged to participate in planning to extent they can

8. WHY CONSIDER DISABILITY? • Extensive history of discrimination, stereotyping & neglect • Paternalistic attitudes • Institutional abuse • Environmental barriers • Inadequate care • Common experiences & world views may create community with needs to be integrated into policy & practice

9. WHY CONSIDER DISABILITY? • Knowledge needed on whether unique community perspectives, attitudes & values exist • Unique from other cultural / demographic groups & population generally • On advance care planning, palliative care, life-sustaining care, etc. • On adverse health states related to PVS

10. WHY CONSIDER DISABILITY:INFLUENCE OF PROVIDER PERCEPTIONS • Lack of regard for people with disabilities among some healthcare professionals documented • Under-estimating quality of life: Implications • Less optimistic views communicated to & influence patient & family decisions regarding aggressive care • May predict provision of life-sustaining treatments • Self-fulfilling prophecy – devalued lives receive less resources for care • Influences community concerns about under-treatment, life-sustaining care & assisted suicide (policy statements)

11. PATERNALISM vs. AUTONOMY • Past presumptions: • People w/intellectual disability lack decisional capacity • The value to protect from harm always prevails over value to maximize autonomy • Recent move towards respecting & maximizing autonomy • People living longer • Cultural changes (emphasis on autonomy) • Disability providers / advocates promoting better end-of-life care

12. INNOVATIVE APPROACHES TO DECISION-MAKING • Pre-Existing Physical Disability • Why treat any differently? • Carefully consider challenges to access: • Paternalistic attitudes & values • Devaluing lives • Institutional abuse • Environmental barriers • Inadequate care

13. INNOVATIVE APPROACHES TO DECISION-MAKING • Focus on decision-specific capacity rather than global determinations • Guidelines for better assessments (Center for Practical Bioethics, 1996) • Resource guides on ACP & EOL (Last Passages / NYSARC, 2000) • Person-centered planning – ongoing communication process (Kingsbury, 2004)

14. INNOVATIVE APPROACHES TO DECISION-MAKING • Assisted capacity – augmenting decisional capacity (Friedman, 1998) • Project BRIDGE – carefully eliciting & listening to preferences (Center for Practical Bioethics, 1999) • Shared decision-making / Best respect – forging consensus among those who know person best – the community of care (Beltran, 1996; Martyn, 1994) • Family values letters (Beltran, 1996)

15. INNOVATIVE APPROACHES TO DECISION-MAKING • Professional education • Policy statements • Honoring & documenting treatment preferences • Treatment should be same as everyone else (AAIDD, 2002) • Reliance on Ethics Committees for guidance • New Jersey regulatory model (NJAC 10:48B)

16. CHALLENGES • Addressing community distrust about devaluing lives & under-treatment / denial of care • Replacing paternalistic attitudes & stereotypes with skilled assessments of capacity & supported decision-making • Limited research, innovative programs & attention • What types of care do people prefer? • Which approaches work best? • How are decisions currently made? • Effective conflict management & consensus-building

17. Case 1: Vivian H. • 62-year old living in group home, comfortable/happy within environment • Presenting: Advanced esophageal cancer • Inappropriate for surgery, chemo, or radiation • Public guardian questions use of PEG tube if she cannot eat • MD recommends hospice & DNR order • EC: hospice referral, DNR order rec’d, PEG tube inconsistent w/comfort care

18. Case 2: Donald P. • 60-year old with Down’s Syndrome • Presenting: Dementia, depression, respiratory failure, multi-system organ failure, sepsis, decubiti • Tracheostomy, PEG tube • MD recommends comfort care, removal of PEG tube • Public guardian requests recommendation for DNR and comfort care • EC: DNR order appropriate, PEG tube could be withdrawn, hospice referral appropriate

19. Case 3: Maureen F. • 64-year old living in supervised apt., limited capacity • Issue: MD wants endoscopy to determine existence of tumor, ulcerative condition, or other condition • Client opposes procedure; MD uncomfortable recommending w/out assent • EC: Psychiatric evaluation re capacity, guardian to reassess consent, rely on trusted family members, consider alternative tx’s, treat depression

20. ACCESS TO HOSPICE CARE:Needs Assessment • Document degree to which hospice & palliative care provided • Challenges in providing care • Need for & use of staff training • Staff experiences in provision of care

21. ACCESS TO HOSPICE CARE:Needs Assessment • Surveys to developmental centers and group homes • Experiences with hospice & palliative care • Training needs of staff on end-of-life care • Surveys to hospices & hospital-based palliative care • Experiences in caring for people with developmental disabilities • Training needs of staff on caring for the community

22. SAMPLE • Survey mailed to 235 Hospitals, Hospices, Developmental Centers, & Group Homes • Responses came from: • 3 Hospitals and 19 Hospices out of 50 (44%) • 50 of 178 Group Homes (28%) • 5 of 7 Developmental Centers (71%)

23. KNOWLEDGE ABOUT DD(5 being very knowledgeable, 1 being not-knowledgeable)

24. KNOWLEDGE ABOUT HOSPICE(5 being very knowledgeable, 1 being not-knowledgeable)

25. USE OF HOSPICE • Use of hospice services • Group Homes – 11 (22%) • DD Centers – 3 (60%) • Number of people with developmental disabilities that have used hospice services in the last year • Group Homes – 1 to 2 persons (n=11) • DD Centers – 1 to 2 persons (n=3)

26. WHY HOSPICE WAS NOT USED • Not needed (n=15) • Don’t meet hospice criteria • Medically fragile population doesn’t last long in hospitals • Not sure what would be offered • Don't provide this service • People requiring 24-hour care can’t live in group homes. • When consumers are diagnosed as terminally ill, they’re either in hospital or nursing facility.

27. PROVISION OF SERVICES • Facility Provides Services to DD • Hospices/Hospital – 20 (91%) • No. People Using Hospice Services (prior year) • Hospitals – 3-4 persons (n=2) • Hospices – 1-22 persons, M=3.6 (n=18) • Why Not Used? • No referrals

28. STAFF TRAINING • 3 Hospices (16%) Provided Training on: • Communication • Pain Management • Physical, psychological, and developmental disabilities • 2 Developmental Disability Centers (40%): • Palliative Care • 6 Group Homes (12%): • Ethics and services available • Hospice • Pain control

29. COMMUNICATION CHALLENGES (5 being very significant, and 1 being not significant)

30. COMMUNICATION CHALLENGES Responses: • Cognitive & motor deficits make it difficult to express needs • Non-verbal clients can’t express pain • Not understanding their illnesses due to cognitive limitations • Medical personnel may not speak directly to client • Family comes out of nowhere & wants everything done

31. NEED FOR SPECIALIZED STAFF EDUCATION & TRAINING (5 being very significant, and 1 being not significant)

32. NEED FOR STAFF EDUCATION • Responses: • Guardians not familiar with hospice • Health workers must make extra effort to understand needs of DD • Hospice staff need to know how to care for DD • Medical staff have difficulty & frustration in communicating • Need for education in care & treatment of people with disabilities

33. CONCLUSIONS • Promote access to palliative care • Professional training critical • Promote awareness • Understand population • Overcome communications barriers • Encourage comfort • Inform families & guardians

34. CONCLUSIONS • Address policy barriers • Encourage hospice & palliative care • Permit DNR orders • Permit withholding or withdrawing of life-prolonging care • Encourage use of ethics committees • Develop services models • Research quality of end-of-life care & impact of new policies • Continuity of leadership critical

35. FOR MORE INFORMATION: GARY L. STEIN, JD, MSW Associate Professor Wurzweiler School of Social Work Yeshiva University New York, NY 212-960-5400, ext. 5442 glstein@yu.edu