Supporting the Carer: Where to Go from Here Peter V. Rabins, MD, MPH Johns Hopkins School of Medicine

Cognitive Trajectory Adjusted for dementia duration

Functional Trajectory Adjusted for gender and dementia duration

Common Ethical Challenges (Practical Dementia Care, 2 nd 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 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 % Spouse % Other Relative % Non-Relative %

CORRELATES OF HAVING ADVANCEDIRECTIVES #%YES%X2X2 p value SEXMale Female AGE< > RACEAfrican Am White <0.001 a Education<High School HS or > <0.001 Marital Status Mar, Wid Sep, Div, Never Living Situation at Admission Lived alone7633 Lived with others a a Fisher’s Exact Test

End Life Wishes Expressed in Advance Directive SUPPORTIVE CARE WantsForbidsConditional?/ContradictoryNone stated Food by mouth 11 a 3b3b 0067 Water by mouth 11 a 3b3b 0067 Comfort care Pain treatment Hospice a,,b same patients

End Life Wishes Expressed in Advance Directive ACTIVE TREATMENTS WantsForbidsCondition al ?/Contradi ctory None stated Artificial nutrition & hydration Tube feeding Ventilator Antibiotics 0 7 c Dialysis 0 7 c Acute Hosp C same patients

Decisions Faced by Surrogates (Surrogate Interview after Resident’s Death) (n = 72) Type of Treatment Faced with Decision N (%) Only Decided For % Ever Decided Against % Hospital admission38 (52.8) Blood test/ diagnostic test29 (40.3) Feeding tube25 (34.7) X-ray21 (29.2) Infection treatment25 (34.7) Respirator/ ventilator17 (23.6) Resuscitate14 (19.4) Surgery4 (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 % NotSome-whatVeryDon’tKnowNotSome-whatVeryDon’tKnow To do blood/dx test19 (26.6) To do x-rays18 (24.7) To treat infection14 (19.2) To treat pneumonia12 (16.4) To use pain medication9 (12.3)100.0 To admit to hospital7 (9.6) To use resp/ vent7 (9.6) To use feeding tube4 (5.5) To provide oxygen3 (4.1) To perform surgery1 (1.4)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 % NotSome-whatVeryDon’tKnowNotSome-whatVeryDon’tKnow Not to hospitalize34 (46.6) Not to use feeding tube24 (32.9) Not to do blood/ dx tests18 (24.7) Not to resuscitate15 (20.6) Not to use resp/ vent14 (19.2) Not to treat infection10 (13.7) Hospice/ palliative care9 (12.3) Not to do x-rays7 (9.6) Not to treat pneumonia5 (6.9) Not to perform surgery5 (6.9) Comfort care2 (2.7) Limit pain medication1 (1.4)100.0 Remove oxygen1 (1.4)100.0

Does Having an Advance Directive Make Decisions to Limit Treatment More Difficult. Four most Common Decisions N=72 (%)Chi 2 ValueP-Value Hospital Admission34 (47%) Blood Tests18 (24.7%)00.99 Feeding Tube24 (33%) Treatment of Infection10 (14%)

Difficulty with Decision Decision To TreatDecision To Limit Not DifficultAny DifficultyNot DifficultAny Difficulty 87.7 %12.3 %55.2 %44.8 % Satisfaction with Decision Decision To TreatDecision To Limit Somewhat Satisfied Very SatisfiedSomewhat 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