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Susan Mitchell-Care of the Patient with Advanced Dementia: What Physicians Need to Know

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

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Susan Mitchell-Care of the Patient with Advanced Dementia: What Physicians Need to Know

  1. 1. Care of the Patient with Advanced Dementia: What Providers Need to Know Susan L. Mitchell MD, MPH
  2. 2. Goals • Describe clinical course of advanced dementia • Present most common complications • Outline an approach to decision-making
  3. 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. 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. 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. 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. 7. Cancer Chronic disease
  8. 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. 9. Clinical Course • CASCADE study • Prospective study 323 NH resident with advanced dementia • 22 NHs in Boston
  10. 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. 11. Reporting of dementia on death certificates Immediate (16%) Underlying (35%) Contributing (16%) Not mentioned(37%) Wachterman et al, JAMA 2009
  12. 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. 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. 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. 15. Ethical Framework • Beneficence • Non-maleficence • Autonomy • Justice
  16. 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. 17. Step 1: Clarify Clinical Situation • Eating problems – Very common in end-stage – Last activity of daily living to be lost
  18. 18. Step 2: Goals of Care • Life prolongation • Maintain function • Comfort Gillick MR, JAMDA 2001
  19. 19. Step 3: Present Options • Supportive care vs. long-term tubefeeding (PEG or J-tube)
  20. 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. 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. 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. 23. Options: Tube-Feeding • Purported benefits – Aspiration – Malnutrition – Survival – Comfort
  24. 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. 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. 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. 27. Step 4: Weigh Options • Align with goal of care – Comfort – Prolong life Hand-Feeding ???
  28. 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. 29. Pneumonia
  30. 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. 31. Step 2: Goals of Care • Life prolongation • Maintain function • Comfort Gillick MR, JAMDA 2001
  32. 32. Step 3: Present Options
  33. 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. 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. 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. 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. 37. Step 4: Weigh Options Options Advantages Disadvantages No Greater Comfort antibiotics/ palliation Shorter Survival Antibiotics Prolong Survival Greater Discomfort Cost Antimicrobial Resistance
  38. 38. Step 4: Weigh Options • Align with goal of care – Comfort – Prolong life Palliation only Antibiotics BUT… Oral may be adequate
  39. 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. 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. 41. Decision to Hospitalize • What is the goal of care? – Survival Comfort – 95% of proxies state comfort • Does hospitalization meet that goal?
  42. 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. 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. 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

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