3. Pre Self-Evaluation
For your learning!
Please chose a random 4 digit number
and write it on your pre Self-
Evaluation, remember for your post

4. How do you have the
conversation?
Funded by the
Picker Institute/Gold Foundation

5. Discussing goals of care
with family members of
patients with dementia.
Jennifer Rhodes-Kropf MD
Division of Geriatrics, BIDMC/HSL
Faculty Harvard Medical School

6. Background
 What has brought me here today?
 Teaching module and medical education
research
 Umbrella project- The Conversation Project

7. Session Goals:
 To understand the natural history and
prognostication for advanced dementia.
 To be familiar with the data that supports a
palliative care approach for patients with
advanced dementia.
 To learn the components of discussing goals of
care with family members of patients with
dementia (role play).

9. The Natural History of Alzheimer's, a
Terminal Diagnosis
Functional
Stages Clinical Function Gen Terms
Assessment
Staging Test 1 No difficulties Normal
(FAST)
2 Subjective forgetfulness Mild Dementia
3 Decreased job functioning and Moderate
organizational capacity Dementia
4 Difficulty with Complex tasks Moderate
instrumental ADLs
5 Requires supervision with ADLs Moderate-
Severe
6 Impaired ADLs, with incontinence Severe
7 A-F, Next Slide Severe-terminal

10. FAST Stage 7, severe-terminal
 A. Ability to speak limited to six words
 B. Ability to speak limited to single word
 C. Loss of ambulation
 D. Inability to sit
 E. Inability to smile
 F. Inability to hold head up

11. FAST 7 scale for Prognostication
 Commonly accepted that FAST 7c (non
ambulatory) is c/w a likely less than 6 month
prognosis and eligible for hospice
 Further hospice criteria, exhibits one or more
dementia related co-morbidities; aspir PNA,
infections (ex UTI), pressure ulcers, persistent
fevers, wt loss >10% in 6 mos.

12. Data on Clinical Course of Advanced
Dementia (AD) All Types
 Mitchell, SL, Teno JM, Kiely Dk, et al. The Clinical Course of
Advanced Dementia. N Engl J Med 2009; (361): 1529-1538.
 2003-2009 data prospectively gathered from 323
nursing home residents with advanced dementia
in 22 facilities

13. Data on Clinical Course of Advanced
Dementia
 Over 18 mos 55% of residents died and
probability of;
 A febrile episode 53% (death 6 mos 45%)
 Pneumonia 41% (death 6 mos 47%)
 Development of eating problems 86% (death 6 mos
39%)
 Note: the 6 mo mortality rate was calculated after
adjustment for age, sex and disease duration.

14. Data on Clinical Course of
Advanced Dementia
 In the last 3 mos of life, 40.7% of residents underwent
at least one burdensome intervention (hospitalization,
ER visit, IV therapy, or tube feeding).
 Residents whose proxies had an understanding of the
poor prognosis and clinical complications expected in
AD were much less likely to have burdensome
interventions in the last 3 mos of life than were
residents whose proxies did not have this
understanding (adjusted OR, 0.12; 95% CI, .04 to .37)

15. AD and PNA; do you treat or not
treat with antibiotics?
 Givens JL, Jones RN, Shaffer ML, et al. Survival and comfort after treatment
of pneumonia in AD. Arch Intern Med. 2010 Jul 12;170(13):1107-9.
 Evaluated the benefit of antimicrobial agents for PNA
on 2 tx goals: survival and comfort for residents given
an antimicrobial agent of any formulation vs. no agent.
 Same CASCADE data base as Mitchell study, from
2003-2009, prospective, 323 NH residents, 22 facilities
 Residents followed for 18 mos or until death
 Comfort level assessed by the Symptom Management at
End-of-Life in Dementia scale among residents who
did not die 90 days post suspected PNA

16. AD and PNA; do you treat or not
treat with antibiotics?
 Abxs prescribed 91% of time for episodes of suspected
PNA
 Survival was improved, as much as 9 mos, after
suspected PNA in the tx group.
 However, after multivariable adjustment in the
residents still living 3 mos post tx, residents receiving
abx had lower scores on the Symptom Management at
EOL in Dementia scale (worse comfort) compared w/
untx’d residents.
 There was rigorous adjustment for clinical
characteristics that are associated w/ likelihood of tx.

17. “Mom is not eating.”
Poor Appetite
 Presuming you’ve ruled out reversible causes for
anorexia, what might help your patient increase
her oral intake?

18. “Mom is not eating.”
Poor Appetite
 Unrestrict diet, consistency
 Calorie drinks/puddings, frequent small meals
 Ethnic food
 Family present at meal times, hire a companion
 Pleasant surroundings (group eating, good smells),
minimize distractions
 Megace, trial mirtazepine
Morley JE. Clinics in Geriatrics Medicine. 2002

19. Dysphasia
 Assessment
 Differential Diagnosis
 What to do when the swallow evaluation states
“keep NPO, high aspiration risk?”

20. Dysphasia
 Assessment; history and bedside
 Differential Diagnosis:
thrush (odynophasia)
pharyngitis (odynophasia)
CVA
Parkinson’s Disease
Acute illness/prolonged ICU stay
Alzheimer's (final stages/near end of life)
 What to do with the swallow evaluation?
 “Time limited trial” of NG tube feeds

21. Tube feed or not to tube feed:
prevention of aspiration pneumonia?
 Does tube feeding prevent aspiration
pneumonia?

22. Tube feed or not to tube feed:
prevention of aspiration pneumonia?
 Three retrospective cohort studies comparing
patients with and without tube feeding
demonstrated no advantage.
 Swallowing studies, such as video fluoroscopy,
lack both sensitivity and specificity in predicting
who will develop aspiration pneumonia.
Finucane et al. 1996. Crogahans 1994

23. Does tube feeding prolong life?
 Finucane and colleagues in 1999, in the
first systemic review of the evidence,
noted that feeding-tube insertion did
not prolong survival.
 No demonstrable improvement in QOL
 No prevention aspiration PNA
 No improvement in healing of pressure sores

24. Does tube feeding prolong life?
1,545 nursing home patients with swallowing
disorders and cognitive impairment
 23% received tubes vs control group of 1,192-
closely matched in nutrition, cognition,
functional status
 1 yr mortality 50% in tube fed, 61% control (risk
ratio .71; 95% confidence interval)
Rudberg MA, et al. 2000

25. Tube feed or not to tube feed:
the issue of quality of life
 “Ido not want my dad to starve
to death or to die of
dehydration.”

26. Tube feed or not to tube feed:
quality of life?
 Most actively dying patients do not experience
hunger or thirst.
 The “flu analogy.”
(uncomfortable to eat if you have no appetite)
 The issue of dehydration.
 Morbidity associated with having a feeding tube.

27. “Comfort Feeding”
 Tips for encouraging increase PO intake per
prior slide
 Swallow consult guidance for family feeding the
patient
 Lots of time spent feeding the patient

28. Discussing artificial nutrition with
families of patients with AD
 Introduction/purpose of meeting
 Assess family person’s understanding of
patient’s condition
 Describe the natural progression of dementia
and indicators of advanced stage of disease
 Present the data* in regards to feeding tubes,
make your recommendations, and discuss any
concerns
 Summarize what was discussed, what decisions
were made, and what further decisions remain to
be decided

29. Discussing goals of care –
additional points
 Decision points; artificial nutrition, IVF, labs,
antibiotics, hospitalizations.
 Presence of Advance Directives (health care proxy and
living will)
 “What did dad want?”
 Palliative care or hospice care
 Issue of resuscitation (DNR/DNI) and DNH
 What conversations have you already experienced in the
setting of AD?

30. Family Meeting Communication
Assessment Tool (FAMCAT)
 (Kalamazoo Consensus Statement on the Essential Elements of
Communication in Medical Encounters. Adapted by J. Irish and colleagues,
BIDMC.)
 Builds the Relationship
 Opens the Discussion
 Gathers Information
 Understands the Patient’s Perspective
 Shares Information
 Reaches Agreement
 Provides Closure
 Manages Flow

31. Role Play of Physician talking to
Daughter of Patient with AD
 Role play is optional. Facilitator will pair all
trainees off and delegate roles.
 Setting: outpatient, patient is medically stable at
this moment, you have cared for the patient for
1 year.

32. Role Play of Physician talking to
Daughter of Patient with AD
 Mrs. Carl has dementia and lives at home with
her daughter. She has 12 hrs a day of private
paid help. Mrs. Carl has not been able to walk
for about 6 months. She was in the hospital 3
times over the last 6 months; once for PNA,
once for a UTI, and most recently for
dehydration. Mrs. Carl is gradually eating less
and less.

33. Role of Daughter with Dementia
 Please work into the conversation these
concerns:
 “Doctor I am really concerned because my Mom is
not eating or drinking very much.”
 “Doctor I do not want my Mom to die of starvation
or dehydration.”
 “I want her to live as long as possible.”
 “I do not want my Mom to suffer.”

34. Role Play Debriefing
 What part of the conversation went the best?
 What part of the conversation was most
challenging?
 What might you as the physician do differently
for future conversations?
 Did your colleagues give you any feedback that
you thought particularly helpful?

35. Take Away Points
 Over 18mos, 55% of AD residents died- AD is a
terminal diagnosis
 Abxs for PNA increase survival, but decreased
QOL
 Management of Poor Appetite
 Dysphasia assessment and differential
 Tube feeds may or may not increase survival
 But, tube feeds do not increase QOL

36. Take Away Points
 Comfort Feeding
 Discussing Goals of Care/artificial nutrition
with families
 Responding to “I do not want my Dad to starve to death
or die of dehydration.”

37. Post Self-Evaluation
For your learning!
Please be sure you have the same 4
digit number on your post test.
jrhodeskropf@hsl.harvard.edu

38. Module Challenges
 Making space in the already packed curriculum
 Modifying the module format to adapt to
varying group size
 Getting residents to attend- non “glamorous”
topic

40. Module II:
Trainee Living Will Assignment