1. Policy Implications of Dementia Tsunami May 2, 2014 Joan M Teno MD, MS Professor of Health Services, Policy, and Practice Warren Alpert School of Medicine

2. Overview From a health system perspective, examine feeding tube decision making in NH residents with advanced cognitive impairment

3. Objective u Recognize the Demographic Changes in the Number of Older Americans Dying of Dementia u Understand and Debate the policy implications of Medicare and Medicaid financial incentives on care of persons with advanced dementia

4. Trends of US deaths from Alzheimer’s disease National Center for Health Statistics

5. New Data Regarding Dementia As Cause of Death

6. Dementia: Change as Cause of Death

7. State Variation in Dementia As Cause of Death

8. New Financial Implications of Dementia (NEJM, 2013) u Current $ 2010 Dementia $109 Billion Heart $102 Billion Cancer $ 77 Billion

9. Projected Costs in 2040 u $379 to $511 Billion dollars u Majority of those costs are custodial care.

10. If you go to midas… u If you get a GI consult, you will something scoped u If you get a Neuro consult, you will get CT, LP, etc.

11. Disease Trajectory in Dementia Despite the advances in pharmacologic treatment, dementia is often a terminal illness with trajectory of progressive decline to point of being bed bound with dysphagia that results in recurrent aspiration pneumonias and in ability to maintain nutrition

12. MILD MODERATE SEVERE ADVANCED MEMORYPERSONALITYSPATIALDISORIENTATION APHASIAAPRAXIACONFUSIONAGITATIONINSOMNIA RESISTIVENESSINCONTINENCEMOTOR IMPAIRMENT IMPAIRMENTBEDFASTMUTE NO MEMORY TIME INDEPENDENCE EATING PROBLEMS RECURRENT INFECTIONS ? ? INSTITUTIONALIZATION DRIVING †

13. CASCADE Choices, Attitudes, and Strategies for Care of Advanced Dementia at the End-of-Life Eligibility u 60+ u LOS of at least 30 days in NH u Severe cognitive impairment – Global Deterioration Scale of 7 u Proxy

14. Choices, Attitudes, and Strategies for Care of Advanced Dementia at the End-of-Life

15. CASCADE: Aims To establish a cohort of nursing home residents with advanced dementia and their proxies (families), follow repeatedly for 18 months: To establish a cohort of nursing home residents with advanced dementia and their proxies (families), follow repeatedly for 18 months: 1. Clinical Course 2. Decision-Making 3. Satisfaction with End-of-Life Care 4. Complicated Grief

16. Patients with advanced dementia † 18 months Health care proxy 18 months 3 months † 2 months post- death 7 months post- death Death 3 months

17. Facilities 22 facilities 22 facilities Within 60 mile radius of Boston Within 60 mile radius of Boston > 60 beds > 60 beds

18. Eligibility criteria Eligibility criteria Eligibility criteria –> 60 y, length of stay > 30 days –Dementia –Global Deterioration Scale = 7 –Proxy available and communicates in English

19. 1728 residents met screening criteria > 60y, CPS = 5, 6, LOS > 30 days 570 eligible Dementia, GDS=7, HCP available and speaks English 0.36 323 dyads recruited 0.57 246 HCP refused 1 physician refused

20. Survival N=177/323 (55%) N=177/323 (55%) Median = 478 days Median = 478 days 6-months = 25% 6-months = 25% 93% die in NH 93% die in NH *Adjusted for age, gender, disease duration

21. Pneumonia Probability of > 1 pneumonia: 41% (N=132/323) 6-month mortality after pneumonia: 47%

22. Survival after Multiple Admissions for Expected Complications of Dementia

23. Febrile Episodes Probability of > 1 febrile episode: 53% (N=171/323) 6-month mortality after febrile episode: 44.5%

24. Eating Problems Probability of eating problem: 86% (N=278/323) 6-month mortality after eating problem: 38.6% Mitchell, NEJM 2009

25. Existing evidence regarding feeding tubes in persons with dementia u Structured literature review of observational studies found that feeding tubes was NOT associated: –Improved survival –Healing of pressure sores –Prevention of aspiration pneumonia –Improved quality of life Finucane, Jama 1999

26. Rate of Feeding Tube Use Among Nursing Home Residents with Severe Cognitive Impairment Teno, JAMA 2001

27. Study of Feeding tubes in Persons with Advance Cognitive Impairment u National MDS data repository u Medicare Denominator, Part A and Part B data u Merged to examine the incidence use of feeding tubes and characterize health care markets that vary in feeding tube incidence

28. u Examining incidence feeding tube insertion among 97241 nursing home residents (74% female, mean age 84.8 years) with Cognitive Performance Score of 4,5, and 6.

29. Incidence of Feeding tube u Low States –HI –ND –SD –UT –Iowa –Less than 5/1000 High States –MS 108/1000 –AL 100/1000 Rhode Island –20/1000

30. Key Questions u Are feeding tube inserted in an Acute Care Hospital stay or in Nursing Home? –68% are inserted during an acute hospital stay u How long do persons survive after a feeding tube insertion? –64% die within one year of feeding tube insertion

31. Rate of Health Care Transitions in the Last Six months of Life among NH Residents

32. Incidence of feeding tubes Insertion

35. Concerns with retrospective case series u Studies only decedents (tells us nothing about the living) u Potentially ICU care could be saving life u Cancer patients may follow different disease trajectories

37. Our approach u Prospective cohort that studies a “clean” cohort of NH residents with advance dementia (e.g., Teno JAMA 2010) u Retrospective cohort with decedents –120 days prior to death with MDS evidence of advanced cognitive impairment and severe functional dependency (Gozalo, NEJM 2011)

39. Striking Variation u 12% of the Hospitals - NO feeding tube insertion over 8 years u 25% hospitals you one in ten chance of getting a feeding tube insertion u Highest, one in three NH residents with advanced dementia had a feeding tube inserted. u Two Hospitals about a mile from each other. One has 3.3 FT insertions per 100 vs. another hospital in LA has 13.3 FT insertions per 100 admission

40. Factors Associated with Higher FT Insertion Rates u For Profit - AOR 1.33 u Larger hospitals AOR 1.48 u Hospitals more aggressive care AOR 2.6

41. Feeding tubes and Survival

42. Rate of Feeding Tube Use Among Nursing Home Residents with Severe Cognitive Impairment Teno, JAMA 2001

43. 5 State Survey of FT Decision Making u 1/2 stated conversations under 15 minutes u 1/3 stated did not discuss risks u 1/2 said MD strongly in favor u 13% stated felt pressured by MD to insert u 1/4 family member regretted the decision

44. And there is Risks to FT u 39% are bothered by feeding tube u 22% were physically restrained u 20% were pharmacologically restrained

45. u Feeding Tubes and Pressure Ulcers

46. Methods u National MDS data repository 1999-2007 Medicare Denominator, Part A and Part B data u Screened MDS for the first Cognitive Performance Score of 6 indicating that NH residents needed assistance in feeding and diagnosis of dementia

47. Statistical Approach Propensity matched cohort study with nearest neighbor match 3 cases without FT: 1 case (PEG feeding tube) with replacement Separate propensity score match for hospitalized NH residents with feeding tube insertion and no evidence of PU (MDS or hospital diagnosis, N=1124). A second model examined those with PU prior to an hospitalization with a feeding tube insertion (N=461). 47

48. Statistical Analyses (2) Outcome was stage II and higher PU on the next MDS for the prevention analysis and healing was noted by improvement of PU Stage. Sensitivity Analyses Prevent PU – we examined risk of development of Stage IV PU Heal PU - i) we examined whether results varied by stage of PU and ii) whether the MDS was completed within 30 days of hospitalization 48

49. Results – Prevent Pressure Ulcer? CharacteristicCase with FTCase w/o FT Avg. Age82.982.7 Gender (%F)70.868.7 Race (% Black)27.025.5 DNR33.735.3 Mech. Altered Diet 44.842.5 Swallowing problems 38.935.8 60 Day Mortality7.05.5

50. Prevention Pressure Ulcer ?? Risk of developing of a new PU was examined among 1124 cases with FT and 2082 cases without a FT. 35.6% vs. 19.8% AOR 2.27 (95% CI 1.95, 2.65) Sensitivity – only Stage IV AOR 3.20 (95% CI 2.14 to 4.89) 50

51. Results – Heal Pressure Ulcer ? CharacteristicCase with FTCases w/o FT Avg. Age83.082.5 Gender (%F)65.364.6 Race (% Black)32.132.2 DNR33.8 Mech. Altered Diet 53.451.5 Swallowing problems 43.241.5 60 Day Mortality12.710.6

52. Heal Pressure Ulcer?? Healing of PU was examined among 461 cases and 754 controls 27.1% improved vs. 34.6% cases without a FT AOR 0.70 (95% CI.55,.89) Sensitivity Analyses By stage, no change in conclusions MDS done within a month, AOR = 0.76 52

53. Limitations u Unobserved factors that is not measured in the MDS. We could only match for those characteristics that were observed. u We relied on MDS for whether there was pressure ulcer. For the analysis of healing of PU, the MDS is completed a variable time period prior to that hospitalization. It is possible that we missed a healing early stage PU. 53

54. Conclusion u PEG FT are not associated with prevention or improved healing of a pressure ulcer. Rather, our findings suggest that use of PEG FT is associated with increase risk of pressure ulcer among NH residents with advanced cognitive impairment. 54

55. Our Conclusion u Our results suggest that decision to insert a feeding tube in nursing home residents with advance dementia is more about which hospitals you go to than a decision making process the illicit and supports patient choice. u There are important risks to feeding tube insertions.

56. The Role of the “System”

57. Incentives u Follow the money..

58. 45.25 - 56.45 56.45 - 58.79 58.79 - 62.46 62.46+ Shading % Medicaid

59. Intrator, Health Services Reserch 2007

60. Hospitalizations is not.. u Without important risks –Relocation stress –Medical Errors –Lack of care coordination –Duplication of diagnostic work up –Hospital unable to meet special needs

62. Table of Two Cities … OutcomeGrand Junction, CO McAllen, TXUS Multiple Hospitalizations for Pneumonia, UTI, dehydration 1.1%25.8%8.1% GBTI None89.0%64.5%81.0% GBTI =111.0%28.0%16.0% GBTI=2+0%7.3%3.1%

63. Association of BT and Adverse Outcomes Outcomes in 2006 and 2007 Lowest Quintile N=19,679 (ARR, 95% CI) 2 nd Quintile N=21,141 (ARR, 95% CI) 3 rd Quintile N=19,870 (ARR, 95% CI) 4 th Quintile N=21,374 (ARR, 95% CI) Highest Quintile N=20,556 (ARR, 95% CI) Feeding Tube Insertion Ref.1.14 (0.81-1.62) 1.97 (1.43-2.70) 2.06 (1.51-2.81) 3.38 (2.48-4.60) Stage IV DURef1.48 (1.31-1.66) 1.65 (1.48-1.85) 2.00 (1.79-2.23) 2.28 (2.04-2.54) ICU use- last 30 days Ref1.47 (1.34-1.61) 1.85 (1.69-2.01) 1.86 (1.71-2.03) 2.10 (1.93-2.29) Late Hospice Referral Ref1.33 (1.23-1.44) 1.40 (1.29-1.51) 1.25 (1.15-1.36) 1.17 (1.07-1.28)

64. Hospitalizations, Feeding Tubes, and Harm “ I will say absolutely with the MediCAL populations - with the 7 day bed hold policy, if the families squawks, I will send the resident out. What do you have to loose? We are still getting paid. Otherwise, we get sued. The family believes they are getting services.” “If it wasn’t so litigious, we would not be sending them out..”

65. Ho: u Feeding tube discussions are difficult – too often perceived as “care” vs. “no care” u The easiest pathway is not having discussions with default of hospitalizations and not addressing goals of care.

66. A proposal for a new order to allow for persons and/or family with neuro-degenerative disorder to select feedings for their comfort, but not to the point of distress.

67. Role of Infections u Suspect that many of these feeding tubes are inserted too early – during an infection in an hospital. Those not hospitalize, many regain ability to undergo careful hand feeding. If they survive long enough, they may progress being unable to eat safely.

68. Some preliminary work on hospital based feeding tube insertions u 42% of the hospitalizations are for a infection u 80% of the time when a feeding tube was inserted, a subspecialist billed for one of more days as the attending physician u 75% of the time when a feeding tube was inserted there was discontinuity in type of physician (hospitalist, generalist, or subspecialist)

69. Attending Physician Rate of FeedingTube Insertion UnadjustedAdjusted Odds Ratio 95% CI Hospitalist (n=9888) 2.2 0.78 (.63-.97) Non-Hospitalist, General Internist (n=24291) 2.5Reference Subspecialist (n=3588) 11.7 4.8 (4.0, 5.8) Discontinuity of the Type of Attending Physician (n=22762) 16.1 7.9 (6.9, 9.0)

70. jamanetwork.com Slide 2 Copyright restrictions may apply.

71. Methods Retrospective cohort 20% sample Medicare fee for service deaths from 2000, 2005, and 2009 Test of trend and multivariate regression model that adjusted for sociodemographic and diseases

72. Results 200020052009 Death in acute care hospital 32.626.924.6 ICU in last month 24.326.329.2 Hospice use21.632.342.2 Health care transition last 90 days 2.12.83.1 Transition last 3 days 10.312.414.2

73. Date of download: 2/5/2013 Copyright © 2012 American Medical Association. All rights reserved. From: Change in End-of-Life Care for Medicare Beneficiaries: Site of Death, Place of Care, and Health Care Transitions in 2000, 2005, and 2009 JAMA. 2013;309(5):470-477. doi:10.1001/jama.2012.207624 Overall, nearly one-half of decedents experienced a transition in the last 2 weeks of life. Decedents with a diagnosis of cancer experienced increases in the use of hospice services, especially in the last week of life, while decedents with a diagnosis of chronic obstructive pulmonary disease (COPD) often transitioned to an acute care hospital. Decedents with dementia were predominantly in a nursing home with transitions to hospice services in last week of life. Figure Legend :

74. Now is the time for Policy Innovation u Bundling of Payments u Concurrent Care

75. Elgol, Scotland

76. Thanks. Joan_Teno@brown.eduJoan_Teno@brown.edu