adults with intellectual disability knowing, planning for...
TRANSCRIPT
FACULTY OF HEALTH SCIENCES
CENTRE FOR DISABILITY RESEARCH AND POLICY
Adults with intellectual disability knowing, planning for and fearing death: Is there a problem?
Roger J. Stancliffe
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Today’s Seminar
Purpose/ Focus Presenter Short Title Adults with intellectual disability deserve information and support about end of life to help them understand and plan.
All All
Universal concerns that apply regardless of disability - issues related to end of life and members of the broader community.
Clayton & Meller Horsfall
Advance care planning Bringing our dying home
Findings of the 3-year research project, Dying to Talk
Stancliffe Wiese & McMaugh
Is there a problem? Learning about dying and death
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Today’s Presenters: Part of the Picture
Person with ID
Family
Researchers
Service providers
Health professionals
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End of Life and People with Intellectual Disability: Where have we come from?
Segregated and anonymous in life and death
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In Minnesota, people who lived and died in institutions, were buried with only a number.
Current Responses to Past Events
› Remembering With Dignity
› http://www.selfadvocacy.org/programs/rwd/
› In 2010 Minnesota’s state legislature officially apologized for the past treatment of state hospital patients.
PBS story
› http://www.pbs.org/newshour/bb/nation-july-dec13-graves_12-26/
› A compelling PBS news story about people who lived and died in institutions in Minnesota, who were buried with only a number, but through the persistent efforts of self-advocates and families and gradually are honoured and remembered with proper headstones (0:00 – 1:40 … “just to be buried as a number…”).
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Remembering with Dignity
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Honoured and remembered with personal headstones
Similar Events Have Occurred in Australia
› Randwick Asylum for Destitute Children (216 children died, many were buried in the grounds. To date, 35 children have been identified by name).
› Peat Island Hospital - Report of 300 people who died there interred in unmarked pauper's graves at Brooklyn cemetery:
http://en.wikipedia.org/wiki/Peat_Island
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What to Do?
ACTING ON OUR VALUES
› If we believe in the dignity and humanity of all we must do far better than we have in the past.
› Now is the time to develop and
evaluate effective interventions to help adults with intellectual disability understand and plan for end of life.
WHO IS RESPONSIBLE?
› “Somebody's got to do something, and it's a damned shame (but) it has to be us!”
› Jerry Garcia, member of the rock band The Grateful Dead
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The Dying to Talk Research Project Phase 1: Is there a Problem?
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Thanks to our participants and DVD performers!
Thanks to our Advisory Group!
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Name Position
Noel Atkinson Parent; Centre for Disability Studies, University of Sydney
Josephine Clayton Associate Professor of Palliative Care, Sydney Medical School, University of Sydney. Staff Specialist Physician in Palliative Medicine, HammondCare’s Palliative & Supportive Care Service, Greenwich and Royal North Shore Hospitals, Sydney.
Brendan Crumpton (supported by Damiano Orlando)
Affiliate, Sunshine
Lyudmyla Dendtler Area Manager Accommodation Services; Northcott Disability Services Parramatta
Gail Jeltes General Manager, Operations & Corporate Relations, Sunshine.
Desmond Meers Senior Pastoral Care Coordinator, HammondCare
Anne Meller Clinical Nurse Consultant Aged Care and Advanced Care Planning; Prince of Wales Hospital
Peter Saul Senior Intensive Care specialist at John Hunter Hospital Newcastle; Director intensive care at Newcastle Private hospital
Roger Stancliffe Professor of Intellectual Disability, Centre for Disability Research and Policy, University of Sydney
Cameron Stewart Pro Dean Sydney Law School; Member of Centre for Health Governance, Law and Ethics; Associate of the Centre for Values, Ethics and the Law in Medicine, Sydney Medical School
Michele Wiese Research Associate, University of Sydney
The Dying to Talk Research Project
THE RESEARCH PROJECT › 3-year research project on end of
life and adults with intellectual disability - Phase 1 - Understanding of end of life
- Phase 2 - Intervention
› Funded by an ARC Linkage grant
› The research partners are
- University of Sydney, Centre for Disability Research and Policy (CDRP)
- Sunshine
THE RESEARCH TEAM › Roger Stancliffe - CDRP
› Josephine Clayton -HammmondCare / University of Sydney
› Sue Read - Keele University
› Gail Jeltes - Sunshine
› Michele Wiese – CDRP
› Rebecca Barton – CDRP
› Pippa McMaugh, Mariko Ward, Hayley Brooks, Bernadette Curryer, and Lewis Kidson
Dying to Talk research project
BACKGROUND (quantitative) We compared the responses of adults with ID and disability staff on
(a) Experience of death
(b) Understanding the concept of death (c) Knowledge of and self-determination about end-of-life planning (d) Fear of death.
› Phase 1
- instrument development
- qualitative study
- family study (McMaugh et al.).
Participants: › 39 adults with mild or moderate
intellectual disability and 40 disability staff
› Adults with ID - Mostly lived independently with drop-
in support,
- In paid work
- Able to self-consent to participation in this study.
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PHASE 1
Experience of Death
› We asked participants to tell us if they had experienced the death of other people.
› There was no significant difference between disability staff and people with ID.
Conclusion Adults with ID were aware of these deaths, so hiding death from them is not an option.
95 100
0102030405060708090
100
Adults with ID Staff
Percentage reporting one or more deaths of others
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Concept of Death Questionnaire (CODQ) (McEvoy, et al. 2012)
› Evaluates understanding of the five components of death - Causality (biological or external
causes of death)
- Finality (the dead cannot come back to life)
- Non-functionality (all life functions stop after death)
- Universality (all living things die)
- Inevitability (one’s own death is inevitable)
› Responses are scored on a 3-point scale: 0= no understanding,
1= partial understanding,
2= sound understanding
› 3 vignettes (no pictures)
› Total scores range from 0-26.
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Concept of Death Questionnaire – Sample item
VIGNETTE “Patrick’s brother is eighteen. Patrick’s brother was killed in a car crash”
QUESTIONS › Will the dead person “ever be alive
again” (Finality)
› What can the person “do now he is not living” (Non-functionality)
› Could this “ever happen to someone else” (Universality)
› Could this “happen to you” (Inevitability).
› What “causes people to die/ how do people die?” (Causality)
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Concept of Death Total Scores
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24.21 25.93
0
13
26
Adults with ID Staff
Understanding the Concept of Death (mean and range)
26
14
26 23
Concept of Death Findings for Participants with ID
› Inevitability one’s own death (69.2% with complete understanding – lowest of any CODQ component).
› Some scored zero on Inevitability by consistently denying, across all three CODQ vignettes, that death could ever affect them.
› Some but not all adults with ID have an incomplete understanding of the basic biological facts of death.
› Variability among participants with ID, with total CODQ scores ranging from 54% to 100% of the scale maximum. - People with mild ID scored significantly
higher than those with moderate ID.
- People with more severe ID likely would have scored lower, revealing a more pronounced difference with staff.
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End-of-Life Planning Scale (EOLPS) (Wiese et al., 2014)
EOLPS assesses knowledge of, and self-determination about:
(1) Bequeathing
(2) Preferred place of care
(3) Funeral wishes
(4) Preferred carers
(5) Advance care planning
(6) Things to take with me
(7) Organ donation
3 questions for each topic:
1. “Who decides if …?”
2. “Could the person decide if …?
3. “What can the person do now to ensure their wish is known about?”
› The EOLPS total score ranges from 0-42.
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A new scale developed for this study.
End-of-Life Planning Scale (EOLPS) – Sample item
“All his adult life David has loved to build things. His dad gave him a hammer and he loves it more than anything he owns. David thinks that when he dies he would like the hammer put in the coffin with his dead body.”
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Things to take with me vignette:
End-of-Life Planning Total Scores
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23.37
41.50
0
7
14
21
28
35
42
Adults with ID Staff
End-of-Life Planning (mean and range)
42
0
42
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Conclusions about End-of-Life Planning
› First data on End-of-Life Planning and people with ID.
› Adults with ID know substantially less about this topic than do disability staff. - People with mild ID scored significantly higher
than those with moderate ID.
› Group differences were consistent across all
7 EOLPS subscales.
Conclusion › This major knowledge gap is socially
important, and calls for interventions to be developed and tested to narrow this disparity.
Low Levels of Self-Determination Q1. (who decides?) Almost 2/3 of participants with ID sored 0 (others decide or don’t know who decides), indicating low levels of self-determination.
› By contrast only 2% of staff responses scored 0 on Q1.
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Fear of Death
› Based on the Collett-Lester Fear of Death Scale, version 3.0 (FODS3.0)(Lester & Abdel-Khalek, 2003).
› Modified to meet the needs of adults with ID by creating the FODS3.0-ID.
Four 7-item factors to evaluate fear of
a) others’ dying
b) others’ death
c) your own dying
d) your own death.
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Fear of Death – Sample item
(a) Others’ dying “Being with a person who is dying”
(b) Others’ death “Seeing the person’s dead body”
(c) Your own dying “Dying in hospital away from family and friends”
(d) Your own death “Dying young”
Responses and scoring › Not frightened (1)
› A bit frightened (2)
› Very frightened (3)
› 28 items.
› FOD3.0-ID total score ranges from 28-84.
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How frightened are you about ….
Fear of Death Total Scores
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63.93
48.52
28
36
44
52
60
68
76
84
Adults with ID Staff
Fear of Death (mean and range)
84
40
72
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Conclusions about Fear of Death
› More fear of death among adults with ID than among disability staff - Consistent with similar differences for fear
in general.
› Fear of death was not significantly
associated with level of ID.
› Wide variability in FODS3.0-ID scores among participants with ID and disability staff.
› No significant relationship between fear of death and understanding the concept of death.
› Some individuals with ID may be very fearful of death, meaning that considerable sensitivity is needed when helping them understand end of life and death more fully.
› Equally, some participants with ID reported low levels of fear of death, so an overly cautious approach with these individuals may be unnecessary.
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Overall Conclusions
› It is possible to reliability assess these issues among adults with ID.
› People with ID already are well aware of the death of people they know, so avoidance and protection are not options.
› Yes there is a problem. Deficits in knowledge, planning and self-determination provide ample justification for interventions to improve these outcomes.
How to respond to this problem. › Substantial variability among our
participants with ID suggests that an individualized intervention approach should be taken.
We will address these issues in Phase 2 (intervention phase) of the Dying to Talk research project.
We will carefully document the benefits of the intervention and measure potential harms.
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Centre for Disability Research and Policy www.sydney.edu.au/health_sciences/cdrp/