ADVANCE CARE PLANNING AND PALLIATIVE CARE FOR PEOPLE WITH DISABILITY

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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

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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

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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.

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THE STRUGGLE

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

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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

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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

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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

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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

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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

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WHY CONSIDER DISABILITYINFLUENCE 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)

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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

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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

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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)

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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)

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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 1048B)

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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

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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 recd, PEG tube
  inconsistent w/comfort care

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Case 2 Donald P.

• 60-year old with Downs 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

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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 txs, treat
  depression

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ACCESS TO HOSPICE CARENeeds 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

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ACCESS TO HOSPICE CARENeeds 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

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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)

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KNOWLEDGE ABOUT DD(5 being very knowledgeable,
1 being not-knowledgeable)
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KNOWLEDGE ABOUT HOSPICE(5 being very
knowledgeable, 1 being not-knowledgeable)
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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 (n11)
• DD Centers 1 to 2 persons (n3)

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WHY HOSPICE WAS NOT USED

• Not needed (n15)
• Dont meet hospice criteria
• Medically fragile population doesnt last long in
  hospitals
• Not sure what would be offered
• Don't provide this service
• People requiring 24-hour care cant live in group
  homes.
• When consumers are diagnosed as terminally ill,
  theyre either in hospital or nursing facility.

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PROVISION OF SERVICES

• Facility Provides Services to DD
• Hospices/Hospital 20 (91)
• No. People Using Hospice Services (prior year)
• Hospitals 3-4 persons (n2)
• Hospices 1-22 persons, M3.6 (n18)
• Why Not Used?
• No referrals

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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

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

• Responses
• Cognitive motor deficits make it difficult to
  express needs
• Non-verbal clients cant 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

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

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CONCLUSIONS

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

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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

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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_at_yu.edu