Advanced Stage Dementia and Palliative Care 2013 NIH/ACL Alzheimers - PowerPoint PPT Presentation

Advanced Stage Dementia and Palliative Care 2013 NIH/ACL Alzheimer’s Webinar Series September 24, 2013

Welcome Ba sil E lda da h, MD, PhD Ac ting Chie f, Ge ria tric s Bra nc h Divisio n o f Ge ria tric s a nd Clinic a l Ge ro nto lo g y a t the Na tio na l I nstitute o f Ag ing e lda da hb @ nia .nih.g o v

NIA Mission T o impro ve the he a lth a nd we ll-b e ing o f o lde r Ame ric a ns thro ug h re se a rc h, a nd spe c ific a lly, to : • Suppo rt a nd c o nduc t hig h-q ua lity re se a rc h o n a g ing pro c e sse s, a g e -re la te d dise a se s, a nd spe c ia l pro b le ms a nd ne e ds o f the a g e d • T ra in a nd de ve lo p hig hly skille d re se a rc h sc ie ntists fro m a ll po pula tio n g ro ups • De ve lo p a nd ma inta in sta te -o f-the -a rt re so urc e s to a c c e le ra te re se a rc h pro g re ss • Disse mina te info rma tio n a nd c o mmunic a te with the pub lic a nd inte re ste d g ro ups o n he a lth a nd re se a rc h a dva nc e s a nd o n ne w dire c tio ns fo r re se a rc h.

NIA Organization Office of the Director Intramural Research Program Division of Division of Geriatrics & Division of Division of Behavioral & Clinical Aging Biology Neuroscience Social Research Gerontology Extramural Divisions

Relevant funding opportunities • “Advanc ing the Sc ie nc e of Ge r iatr ic Palliative Car e ” o R01: http:/ / g ra nts.nih.g o v/ g ra nts/ g uide / pa -file s/ PA- 13-354.html R03: http:/ / g ra nts.nih.g o v/ g ra nts/ g uide / PA-file s/ PA- o 13-356.html R21: http:/ / g ra nts.nih.g o v/ g ra nts/ g uide / PA-file s/ PA- o 13-355.html • “Pain in Aging” o R01: http:/ / g ra nts.nih.g o v/ g ra nts/ g uide / PA-file s/ PA- 13-058.html R03: http:/ / g ra nts.nih.g o v/ g ra nts/ g uide / PA-file s/ PA- o 13-060.html o R21: http:/ / g ra nts.nih.g o v/ g ra nts/ g uide / PA-file s/ PA- 13-059.html

Relevant NIA-Supported Research Centers • Alzhe ime r ’s Dise ase Re se ar c h Ce nte r s o http:/ / www.nia .nih.g o v/ a lzhe ime rs/ a lzhe ime rs- dise a se -re se a rc h-c e nte rs • Claude D. Pe ppe r Olde r Ame r ic ans Inde pe nde nc e Ce nte r s o https:/ / www.pe ppe rc e nte r.o rg / pub lic / ho me .c fm • Re sour c e Ce nte r s for Minor ity Aging Re se ar c h o http:/ / www.nia .nih.g o v/ re se a rc h/ db sr/ re so urc e - c e nte rs-mino rity-a g ing -re se a rc h-rc ma r

Clinical Course of Advanced Dementia: Complications, Interventions, and Decision-Making Susan L. Mitchell MD, MPH

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

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

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

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

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

Cancer CHRONIC DISEASE

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Step 4: Weigh Options Options Advantages Disadvantages Hand- Tastes food Takes Time feeding Social Interaction Inconsistent Intake Focus on comfort Tube- Nutrition delivered No Clear Benefits feeding Complications

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

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

Pneumonia

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

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

Step 3: Present Options

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

Pneumonia: survival Survival after pneumonia episodes 1.00 0.75 0.50 0.25 0.00 0 200 400 600 analysis time No treatment Oral antimicrobials IM 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

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

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\

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

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

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

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