Supporting the Carer: Where to Go from Here

Peter V. Rabins, MD, MPH

Johns Hopkins School of Medicine

Cognitive TrajectoryTime*Spouse Caregiver*Closeness

-16

-14

-12

-10

-8

-6

-4

-2

0

1 2 3 4 5 6 7 8

Visit (per 6 months)

MM

SE

dev

iati

on

fro

m v

isit

0

lowClose/Spouse

lowClose/Child

modClose/Spouse

modClose/Child

HighClose/Spouse

HighClose/Child

Adjusted for dementia duration

Functional TrajectoryTime*Spouse Caregiver*Closeness (p<.001)

0

5

10

15

20

25

1 2 3 4 5 6 7 8

Visit (per 6 mo.)

Su

m-C

DR

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vis

it 0

lowClose/Spouse

lowClose/Child

modClose/Spouse

modClose/Child

HighClose/Spouse

HighClose/Child

Adjusted for gender anddementia duration

Common Ethical Challenges(Practical Dementia Care, 2nd Ed. Chapter 13, in press)

• The person who doesn’t 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 patient’s life and prevent harm

• The person with poor oral intake

• Medical decision making for the severely incapacitated

Decision Making in Late-Stage Dementia Demographic Characteristics (n=125)

Residents SurrogatesFemales 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 %

CORRELATES OF HAVING ADVANCEDIRECTIVES# % YES % X2 p value

SEX Male 23 29 32 26

Female 19 15 49 40 2.60 0.107

AGE <80 19 15 26 21

80-89 17 14 46 37

>89 6 5 9 7 2.91 0.226

RACE African Am 16 13 4 3

White 26 21 77 62 <0.001a

Education <High School 24 21 16 14

HS or > 16 14 61 52 17.998 <0.001

Marital Status Mar, Wid 32 26 73 59

Sep, Div, Never 10 8 8 7 4.298 0.038

Living Situationat Admission

Lived alone 7 6 3 3

Lived with others 35 28 77 63 0.019a

a Fisher’s Exact Test

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

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

Decisions Faced by Surrogates(Surrogate Interview after Resident’s Death)

(n = 72)

Type of TreatmentFaced 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

Difficulty and Satisfaction with Decisions To Treat(Surrogate Interview after Resident’s Death)

(n = 72)

Provide Treatment Made Decisions

N (%)

Difficulty of Making Last Decision

%

Satisfaction with Last Decision

%

No

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Do

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Kn

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No

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ow

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

Difficulty and Satisfaction with Decisions to Limit Treatment

(Surrogate Interview after Resident’s Death)

(n = 73)

Limit Treatment Made

Decisions

N (%)

Difficulty of Making Last Decision

%

Satisfaction with Last Decision

%

No

t

So

me

-w

ha

t

Ve

ry

Do

n’t

Kn

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No

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Do

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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

Does Having an Advance Directive Make Decisions to Limit Treatment More

Difficult.Four most Common

DecisionsN=72 (%) Chi 2

ValueP-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 -----

Difficulty with DecisionDecision To Treat Decision To Limit

Not Difficult Any Difficulty Not Difficult Any Difficulty

87.7 % 12.3 % 55.2 % 44.8 %

Satisfaction with DecisionDecision To Treat Decision To Limit

Somewhat Satisfied

Very Satisfied Somewhat Satisfied

Very Satisfied

28.8 % 71.2 % 19.4 % 80.6 %

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