2014 Jewish Home Lifecare Palliative Care conference: It's Not the Place, It's the Practice

1. Care of the Patient with Advanced
Dementia: What Providers Need to Know
Susan L. Mitchell MD, MPH

2. Goals
• Describe clinical course of advanced
dementia
• Present most common complications
• Outline an approach to decision-making

3. Epidemiology
• Over 5 million Americans have
Alzheimer’s disease, 16 million by
2050.
• 5th leading cause of death in US for
persons > 65 years
• Grossly underestimated on death
certificates

4. 2001 Location of Death
80
Hospital
Nursing Home
70
Home
% Deaths
60
Other
50
40
30
20
10
0
Dementia
Mitchell SL et. al. JAGS 2005
Cancer
Other conditions

5. Advanced Dementia
Global Deterioration Scale Stage 7
– Do not recognize family
– Loss of all verbal abilities
– Non-ambulatory
– Incontinent
* Reisberg B, J Psychiatry 1982

6. Background
• Palliative care sub-optimal across
care settings:
– Under-recognition as a terminal
condition
– Prognostication
– Lack of high quality research
– Under-utilization of hospice

7. Cancer
Chronic disease

8. Prognosis
•
•
•
•
Challenging
Guides decision making and hospice
Very limited empiric work
ADEPT study
• ADEPT:
• Hospice:
AUROC = 0.68
AUROC = 0.55
• Receipt of palliative care should be
based on goals of care
* Mitchell SL, JAMA 2010

9. Clinical Course
• CASCADE study
• Prospective study 323 NH resident
with advanced dementia
• 22 NHs in Boston

10. Clinical Course
• CASCADE study
– Mortality: 55% over 18 months (40%
over 12 months)
– Expected complications
• ~ 90% eating problems
• ~50% recurrent infections/fever
• Others rare (stroke, fracture, MI)
– Burdensome symptoms
• Increase toward death
• Last 3 months: pain 25%; dyspnea 30%
* Mitchell SL, NEJM 2009

11. Reporting of dementia on
death certificates
Immediate (16%)
Underlying (35%)
Contributing (16%)
Not mentioned(37%)
Wachterman et al, JAMA 2009

12. Proxy preparedness:
association with interventions
HCP perceives…
All
Decedents
N=177 (%)
Burdensome
interventions last 3
months of life* (%)
AOR
(95% CI)**
< 6 months to live
Yes
No
26
74
30
44
0.3 (0.1-0.8)
referent
Understand complications
Yes
No
82
18
36
65
0.3 (0.2-0.6)
referent
Both
Either
Neither
21
67
12
27
39
73
0.1 (0.04-0.4)
0.2 (0.1-0.5)
referent
* Burdensome intervention=hospitalization, emergency room, parenteral therapy, feeding tube during last 3
months of life
**adjusted for facility clustering and occurrence of clinical complications

13. Decision-Making
Proxy’s participated in 126 decisions
Eating problem (29% )
Pneumonia (19% )
Febrile illness (6% )
Pain Rx (18% )
Dyspnea Rx (10% )
Behavior Rx (10% )
Seizure Rx (6% )
Other (2% )
Givens JL, JAGS 2009

14. Decision-Making
• Advance care planning is critical
• Opportunity to discuss early
– Prepare family for what to expect in
advanced stages
– Elicit wishes
– Set the stage for future discussions

15. Ethical Framework
• Beneficence
• Non-maleficence
• Autonomy
• Justice

16. Steps to Operationalize
Ethical Decision-Making
1.
2.
3.
4.
Clarify clinical situation
Determine primary goal of care
Present treatment options
Weigh options against perceived
values

17. Step 1: Clarify Clinical Situation
• Eating problems
– Very common in end-stage
– Last activity of daily living to be lost

18. Step 2: Goals of Care
• Life prolongation
• Maintain function
• Comfort
Gillick MR, JAMDA 2001

19. Step 3: Present Options
• Supportive care vs. long-term tubefeeding (PEG or J-tube)

20. Ranking the Evidence
1st
2nd
3rd
• Randomized controlled trial
• None!
• Cohort studies
• Few
• Selection bias
• Case series (many)
• Prognostic information
• No control group

21. Options: Hand-Feeding
• Provide food and drink to the extent
that is enjoyable
• Sub-optimal nutrition in favor of
comfort
• Palliative care
– Treatment not stopped

22. Tube-feeding
• Over 30% of nursing home residents with
advanced dementia are tube-fed*
• 68% of feeding-tube insertions occur
during acute hospitalization**
• Wide regional variation
*Mitchell SL et al, JAMA;2004
**Kuo S et al, JAMDA;2009

23. Options: Tube-Feeding
• Purported benefits
– Aspiration
– Malnutrition
– Survival
– Comfort

24. Arch Intern Med; 1997
.5
0
.25
JAGS; 2012
Survival
.75
1
1 Year Survival from Baseline by FT Status
0
100
200
Days from Baseline
No FT
300
FT
400

25. Tube-Feeding: Risks
• Relatively safe procedure
• Special considerations
– Agitation
– Hospital transfer for complications
– Pressure ulcers: increased risk and
poorer healing
• Teno et al, Arch Intern Med;2012

26. Step 4: Weigh Options
Options
Advantages
Disadvantages
Handfeeding
Tastes food
Social Interaction
Focus on comfort
Takes Time
Inconsistent Intake
Tubefeeding
Nutrition delivered
No Clear Benefits
Complications

27. Step 4: Weigh Options
• Align with goal of care
– Comfort
– Prolong life
Hand-Feeding
???

28. Step 4: Weigh Options
• Expert opinion and empiric
data
– tube-feeding has no
demonstrable benefits in
advanced dementia
–tube-feeding should not be
offered
*Gillick MR, NEJM 2000
#Finucane T et al, JAMA 1999

29. Pneumonia

30. Step 1: Clarify Clinical Situation
• Very common in end-stage
dementia: ~ 50% last 90 days
• High mortality
• Discomfort:
symptoms* and treatment
*van der Steen et al, JAGS 2002

31. Step 2: Goals of Care
• Life prolongation
• Maintain function
• Comfort
Gillick MR, JAMDA 2001

32. Step 3: Present Options

33. % residents getting
antimicrobial
Antimicrobial Exposure
45
40
35
30
25
20
15
10
5
0
56-43
42-29
28-15
Days prior to death
*D’Agata EMD, Mitchell SL Arch Int Med 2007
14-0

34. Pneumonia: survival
0.00
0.25
0.50
0.75
1.00
Survival after pneumonia episodes
0
200
400
600
analysis time
No treatment
IM antimicrobials
Oral antimicrobials
IV antimicrobials or hospitalization
*Adjusted for age, gender, race, functional status, suspected aspiration, congestive heart failure, hospice
referral, do-not-hospitalize order, and chest x-ray having been obtained.
*Givens JL Arch Int Med 2010

35. Mean SM_EOLD*
Pneumonia: Comfort
45
40
35
30
25
20
15
10
5
0
Ptrend= 0.01
None
Oral
IM
Antibiotic treatment
IV or
hospital
*Symptom Management at the End-of-Life in Dementia, range=0-45, higher score means more comfort

36. Antimicrobial Resistance
• Nursing home prevalence
study (N=84)
– 64% advanced
dementia colonized
– 3 times higher than
other residents
• Nursing home residents
bring resistant bacteria
into hospitals
• Public health issue
*Pop-Vicas A, J Am Geriatr Soc 2008

37. Step 4: Weigh Options
Options
Advantages
Disadvantages
No
Greater Comfort
antibiotics/
palliation
Shorter Survival
Antibiotics Prolong Survival
Greater Discomfort
Cost
Antimicrobial
Resistance

38. Step 4: Weigh Options
• Align with goal of care
– Comfort
– Prolong life
Palliation only
Antibiotics
BUT…
Oral may be adequate

39. CASCADE: Hospital Transfers
Admissions (N=74)
%
ER Visits (N=60)
%
Infections
59
Feeding Tube Cx
47
GI Bleed
8
Infection
27
Dyspnea
7
Fall
15
Fracture
5
Fracture
3
Heart Failure
3
Mental Status Change
2
Dehydration
3
Chest Pain
2
Feeding Tube Cx
3
IV insertion
2
Other
12
Jaundice
2

40. Hospitalization
• Most (> 75%) hospital transfers of NH
advanced dementia are avoidable…
Managed same efficacy in nursing home
OR
Not consistent with goal of care/preferences

41. Decision to Hospitalize
• What is the goal of care?
– Survival
Comfort
– 95% of proxies state comfort
• Does hospitalization meet that goal?

42. Summary
• Dementia is terminal illness
• Feeding problems and infections are
most common complications and
decisions
• Aggressive interventions are less
likely when families have a better
understanding of prognosis and
expected complications

43. Summary
• Ethical decision-making
 informed , guided by the goals of care
• Tube-feeding has no demonstrable
benefits and should not be offered
• Antimicrobial treatment of pneumonia may
prolong life but also cause more
discomfort
• Most hospitalizations avoidable

44. Take home points
•
•
•
•
Opportunity for advance care planning
Focus on goals of care
Do not feel compelled to offer everything
Be knowledgeable about the best
evidence
• Use decision support tools/geriatric
consults/team