Supporting the Carer: Where to Go from Here

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Supporting the Carer Where to Go from Here

• Peter V. Rabins, MD, MPH
• Johns Hopkins School of Medicine

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Cognitive Trajectory
Adjusted for dementia duration
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Functional Trajectory
Adjusted for gender and dementia duration
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Common Ethical Challenges(Practical Dementia
Care, 2nd Ed. Chapter 13, in press)

• The person who doesnt want to be evaluated
• The person who lives alone
• The person who demands to drive
• The use of medication and restraints to control
  behavior and protect from harm
• The use of lying to better patients life and
  prevent harm
• The person with poor oral intake
• Medical decision making for the severely
  incapacitated

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Decision Making in Late-Stage Dementia
Demographic Characteristics (n125)
Residents Surrogates Females
55
77 White
84 82 Age - Mean (SD)
81.5 (7.0)
60.2 (12.1) Education - Mean (SD)
11.5 (3.5) 14.7
(3.3) Widowed
54 4.0 Married
30 75.2
Sep, Div, Nev Mar
15 20.8 Daughter or Son --
51.2 Spouse -- 25.6 Other
Relative -- 15.2 Non-Relative --
8.0
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CORRELATES OF HAVING ADVANCEDIRECTIVES
YES X2 p value
SEX Male 23 29 32 26
SEX Female 19 15 49 40 2.60 0.107
AGE lt80 19 15 26 21
AGE 80-89 17 14 46 37
AGE gt89 6 5 9 7 2.91 0.226
RACE African Am 16 13 4 3
RACE White 26 21 77 62 lt0.001a
Education ltHigh School 24 21 16 14
Education HS or gt 16 14 61 52 17.998 lt0.001
Marital Status Mar, Wid 32 26 73 59
Marital Status Sep, Div, Never 10 8 8 7 4.298 0.038
Living Situation at Admission Lived alone 7 6 3 3
Living Situation at Admission Lived with others 35 28 77 63 0.019a
Living Situation at Admission
a Fishers Exact Test
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End Life Wishes Expressed in Advance
DirectiveSUPPORTIVE CARE
Wants Forbids Conditional ?/Contradictory None stated
Food by mouth 11a 3b 0 0 67
Water by mouth 11a 3b 0 0 67
Comfort care 29 0 0 3 49
Pain treatment 33 2 0 4 42
Hospice 2 0 0 0 79
a,,b same patients a,,b same patients a,,b same patients a,,b same patients a,,b same patients a,,b same patients

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End Life Wishes Expressed in Advance Directive
ACTIVE TREATMENTS
Wants Forbids Conditional ?/Contradictory None stated
Artificial nutrition hydration 6 38 5 0 32
Tube feeding 1 8 0 0 72
Ventilator 0 10 1 0 70
Antibiotics 0 7c 1 0 74
Dialysis 0 7c 1 0 74
Acute Hosp 0 0 0 0 81
C same patients
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Decisions Faced by Surrogates (Surrogate Interview after Residents Death) (n 72) Decisions Faced by Surrogates (Surrogate Interview after Residents Death) (n 72) Decisions Faced by Surrogates (Surrogate Interview after Residents Death) (n 72) Decisions Faced by Surrogates (Surrogate Interview after Residents Death) (n 72)
Type of Treatment Faced with Decision N () Only Decided For Ever Decided Against
Hospital admission 38 (52.8) 13.1 86.8
Blood test/ diagnostic test 29 (40.3) 44.84 55.2
Feeding tube 25 (34.7) 8.0 92.0
X-ray 21 (29.2) 66.7 33.3
Infection treatment 25 (34.7) 64.0 36.0
Respirator/ ventilator 17 (23.6) 23.5 76.5

Resuscitate 14 (19.4) -- 100.0
Surgery 4 (5.6) 100.0
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Difficulty and Satisfaction with Decisions To Treat (Surrogate Interview after Residents Death) (n 72) Difficulty and Satisfaction with Decisions To Treat (Surrogate Interview after Residents Death) (n 72) Difficulty and Satisfaction with Decisions To Treat (Surrogate Interview after Residents Death) (n 72) Difficulty and Satisfaction with Decisions To Treat (Surrogate Interview after Residents Death) (n 72) Difficulty and Satisfaction with Decisions To Treat (Surrogate Interview after Residents Death) (n 72) Difficulty and Satisfaction with Decisions To Treat (Surrogate Interview after Residents Death) (n 72) Difficulty and Satisfaction with Decisions To Treat (Surrogate Interview after Residents Death) (n 72) Difficulty and Satisfaction with Decisions To Treat (Surrogate Interview after Residents Death) (n 72) Difficulty and Satisfaction with Decisions To Treat (Surrogate Interview after Residents Death) (n 72) Difficulty and Satisfaction with Decisions To Treat (Surrogate Interview after Residents Death) (n 72)
Provide Treatment Made Decisions N () Difficulty of Making Last Decision Difficulty of Making Last Decision Difficulty of Making Last Decision Difficulty of Making Last Decision Satisfaction with Last Decision Satisfaction with Last Decision Satisfaction with Last Decision Satisfaction with Last Decision
Provide Treatment Made Decisions N () Not Some-what Very Dont Know Not Some-what Very Dont Know
To do blood/dx test 19 (26.6) 78.9 5.3 15.8 36.8 63.2
To do x-rays 18 (24.7) 100.0 16.7 83.3
To treat infection 14 (19.2) 85.7 7.1 7.1 28.6 71.4
To treat pneumonia 12 (16.4) 91.7 8.3 25.0 75.0
To use pain medication 9 (12.3) 100.0 100.0
To admit to hospital 7 (9.6) 100.0 14.3 85.7
To use resp/ vent 7 (9.6) 71.4 14.3 14.3 28.6 71.4
To use feeding tube 4 (5.5) 100.0 25.0 50.0
To provide oxygen 3 (4.1) 100.0 25.0 100.0
To perform surgery 1 (1.4) 100.0 100.0
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Difficulty and Satisfaction with Decisions to Limit Treatment (Surrogate Interview after Residents Death) (n 73) Difficulty and Satisfaction with Decisions to Limit Treatment (Surrogate Interview after Residents Death) (n 73) Difficulty and Satisfaction with Decisions to Limit Treatment (Surrogate Interview after Residents Death) (n 73) Difficulty and Satisfaction with Decisions to Limit Treatment (Surrogate Interview after Residents Death) (n 73) Difficulty and Satisfaction with Decisions to Limit Treatment (Surrogate Interview after Residents Death) (n 73) Difficulty and Satisfaction with Decisions to Limit Treatment (Surrogate Interview after Residents Death) (n 73) Difficulty and Satisfaction with Decisions to Limit Treatment (Surrogate Interview after Residents Death) (n 73) Difficulty and Satisfaction with Decisions to Limit Treatment (Surrogate Interview after Residents Death) (n 73) Difficulty and Satisfaction with Decisions to Limit Treatment (Surrogate Interview after Residents Death) (n 73) Difficulty and Satisfaction with Decisions to Limit Treatment (Surrogate Interview after Residents Death) (n 73)
Limit Treatment Made Decisions N () Difficulty of Making Last Decision Difficulty of Making Last Decision Difficulty of Making Last Decision Difficulty of Making Last Decision Satisfaction with Last Decision Satisfaction with Last Decision Satisfaction with Last Decision Satisfaction with Last Decision
Limit Treatment Made Decisions N () Not Some-what Very Dont Know Not Some-what Very Dont Know
Not to hospitalize 34 (46.6) 61.8 8.8 29.4 14.7 79.4 5.9
Not to use feeding tube 24 (32.9) 54.2 16.7 29.2 20.8 70.8 8.3
Not to do blood/ dx tests 18 (24.7) 55.6 16.7 27.8 5.6 83.3 11.1
Not to resuscitate 15 (20.6) 66.7 6.7 26.7 6.7 26.7 53.3 13.3
Not to use resp/ vent 14 (19.2) 50.0 28.6 21.4 28.6 57.1 14.3
Not to treat infection 10 (13.7) 60.0 40.0 20.0 70.0 10.0
Hospice/ palliative care 9 (12.3) 77.8 22.2 100.0
Not to do x-rays 7 (9.6) 71.4 28.6 71.4 28.6
Not to treat pneumonia 5 (6.9) 40.0 20.0 40.0 20.0 60.0 20.0
Not to perform surgery 5 (6.9) 40.0 20.0 40.0 20.0 60.0 20.0
Comfort care 2 (2.7) 50.0 50.0 100.0
Limit pain medication 1 (1.4) 100.0 100.0
Remove oxygen 1 (1.4) 100.0 100.0
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Does Having an Advance Directive Make Decisions to Limit Treatment More Difficult. Does Having an Advance Directive Make Decisions to Limit Treatment More Difficult. Does Having an Advance Directive Make Decisions to Limit Treatment More Difficult. Does Having an Advance Directive Make Decisions to Limit Treatment More Difficult.
Four most Common Decisions N72 () Chi 2 Value P-Value
Hospital Admission 34 (47) 0.19 0.66
Blood Tests 18 (24.7) 0 0.99
Feeding Tube 24 (33) 6.135 0.03
Treatment of Infection 10 (14) 0.741 -----
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Difficulty with Decision Difficulty with Decision Difficulty with Decision Difficulty with Decision
Decision To Treat Decision To Treat Decision To Limit Decision To Limit
Not Difficult Any Difficulty Not Difficult Any Difficulty
87.7 12.3 55.2 44.8
Satisfaction with Decision Satisfaction with Decision Satisfaction with Decision Satisfaction with Decision
Decision To Treat Decision To Treat Decision To Limit Decision To Limit
Somewhat Satisfied Very Satisfied Somewhat Satisfied Very Satisfied
28.8 71.2 19.4 80.6
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Research Team

• Betty Black
• Hillary Phillips
• David Blass
• Linda Fogarty
• Holly Taylor
• Tom Finucane
• David Loreck

• Alva Baker
• Linda Hovanek
• Michelle Knowles
• Kate Hicks
• Pearl German