1. W. DAVID CLARK, MD NOVEMBER 18, 2015 Nutrition Considerations in Advanced Dementia

2. Disclosure I have no financial interests or relationships with any manufacturers of products or providers of services that I may reference in my presentation.

3. Objectives Briefly review the technical aspects of percutaneous endoscopic gastrostomy (PEG) tube placement Summarize current recommendations for tube nutrition in advanced dementia Discuss meaningful informed consent provided to surrogate decision-makers considering PEG placement in demented patients

4. Palliative Care: Your Initial Thoughts? Hospice Brink of death Depressing The people who come in when there’s nothing more doctors can do Nice people, but hope I never need them Palliative Care initiates conversations that address suffering  Any age, any stage of illness

5. “I hate to sound this way, but why me? Why me with dementia?” Pat Summitt

6. Statistics Alzheimer’s dementia: 6 th leading cause of death in US 1 in 9 people over age 65 have Alzheimer’s dementia  1 in 3 at age 85 and older Cost to Nation:  $226 billion annual estimated cost in 2015  Estimated annual cost $1.1 trillion (in 2015 dollars) by 2050. Alzheimer’s Association

7. Irreversible Dementias Alzheimer’s dementia Multi-infarct dementia Parkinson disease Picks disease Huntington chorea HIV-associated dementia

8. Clinical Course of Advanced Dementia 323 nursing home residents with advanced dementia 22 NH; resident + HC proxy followed 18 months Average age 85.3 yrs 85% female Dementia  Alzheimer’s 72.4 %  Vascular 17%  Other12.7% 54.8% mortality at the end of 18 months enrollment Mitchell SL, M.D., Teno, JM, Kiely DK, Shaffer ML, et al. The clinical course of advanced dementia. NEJM 2009; 131(16): 1529-1538

9. Clinical Course of Advanced Dementia Proxy Perspective: 96% believed that comfort was the primary goal of care Communication to Proxy: 18% had received prognostic information from a physician 32.5% said a physician had counseled them on complications to expect in advanced dementia Mitchell SL, M.D., Teno, JM, Kiely DK, Shaffer ML, et al. The clinical course of advanced dementia. NEJM 2009; 131(16): 1529-1538

10. Clinical Course of Advanced Dementia Adjusted 6 month mortality: One episode of pneumonia46.7% Febrile episode44.5% Eating problems36.8% Mitchell SL, M.D., Teno, JM, Kiely DK, Shaffer ML, et al. The clinical course of advanced dementia. NEJM 2009; 131(16): 1529-1538

11. Clinical Course of Advanced Dementia Distressing symptoms occurring sometime in 18- month F/U: Dyspnea > 5 days/month46% Pain > 5 days/month39% Pressure ulcers (Stage II or higher)38.7% Agitation53.6% Aspiration40.6% Mitchell SL, M.D., Teno, JM, Kiely DK, Shaffer ML, et al. The clinical course of advanced dementia. NEJM 2009; 131(16): 1529-1538

12. Tube Feeding in Demented Patients: Evidence No evidence for preventing aspiration pneumonia Any evidence of perceived caloric advantages are outweighed by the adverse effects of tube feeding No evidence of prolonged survival in demented patients with dysphagia No evidence of pressure sores being prevented or improved by tube feedings No evidence of functional decline mitigated or functional status improved No evidence of enhanced comfort Finucane TE, Christmas C, Travis K Tube feeding in patients with advanced dementia. A review of the evidence. JAMA 1999; 282(14):1365-1370

13. PEG Complications 484 patients All pts with PEG inserted in hospital during study (4.5 yrs) Indications for PEG  Tumors (44%)  Head/neck cancer  Gastric/esophageal cancer  Neurological disorders (45%)  Stroke  Neurological disease other than stroke  Dementia (2% of cohort) Blomberg J, Lagergren J, Martin L, Mattsson F, Lagergren P Complications after percutaneous endoscopic gastrostomy in a prospective study. Scand J Gastroenterol. 2012 Jun;47(6):737-42

14. PEG Complications Surveillance:  Mortality  Leakage  Diarrhea  Constipation  Abdominal pain  Fever  Peristomal infection

15. Complication at 2 Months Diarrhea 10% Leakage 8% Peristomal infection 6% Fever 1% 18% died within 2 months of PEG insertion

16. Inadvertent Tube Removal: Mature Tract Typically occurs in combative or confused patients PEG tube tract requires ~ 4 weeks to mature If mature, a Foley catheter or replacement tube can be reinserted Tract will begin to close within 24 hours Gastrostomy tubes: Complications and their management Mark H. DeLegge, MD, FACG UpToDate

17. Inadvertent Tube Removal: Immature Tract Allow PEG tract to heal New PEG tube can be placed in a few days at a different site Replacement will require another endoscopy IV antibiotics for minimum of 7 days and observed for signs of peritonitis Gastrostomy tubes: Complications and their management Mark H. DeLegge, MD, FACG UpToDate

21. PEG Origin First introduced in 1980 as a way to deliver nutrition to critically ill children

24. PEG placement after initial evaluation for severe dementia: 3.8% of patients in Nebraska 41.8% of patients in the District of Columbia Teno JM, Mor V, SeSilva D, et al. Use of feeding tubes in nursing home residents with severe cognitive impairment. JAMA 2002;287:3211-2 Geographic Variation

26. “The biggest problem with communication is the illusion that it has occurred.” George Bernard Shaw

27. Informed Consent: Is It Adequate? 154 consecutive hospitalized pts (1 year) with advanced chronic illness who underwent feeding gastrostomy 4 categories of illness  Acute stroke35.7%  Chronic dementia20%  Other neurologic conditions14.9%  Non-neurologic conditions with failure to thrive29% Brett AS; Rosenberg JC The adequacy of informed consent for the placement of gastrostomy tubes. Arch Intern Med 2001;161: 745-748

28. Informed Consent: Is It Adequate? “We considered any documented discussion of specific benefits and burdens of and alternatives to tube feeding, however brief, to constitute adequate informed consent.” Brett AS; Rosenberg JC The adequacy of informed consent for the placement of gastrostomy tubes. Arch Intern Med 2001;161: 745-748

29. Informed Consent: Is It Adequate? Adequate discussion documented in 1 of 154 pts Advanced Directive available 7.1% Authorization  Patient 7.8%  Surrogate (over telephone) 22.1% Brett AS; Rosenberg JC The adequacy of informed consent for the placement of gastrostomy tubes. Arch Intern Med 2001;161: 745-748

30. Informed Consent: Is It Adequate? Cumulative Mortality  In Hospital 16.9%  30 Day31.8%  1 year50% AS Brett; JC Rosenberg The adequacy of informed consent for the placement of gastrostomy tubes. Arch Intern Med 2001;161: 745-748

31. Informed Consent: Is It Adequate? Typical Sequence of decision-making: PN documents dysphagia, aspiration, or inadequate energy intake in pt unable or unwilling to swallow “May need gastrostomy tube.” Swallowing study confirms dysphagia and/or aspiration Consultant sees pt, agrees gastrostomy needed Process suggests “inevitability” AS Brett; JC Rosenberg The adequacy of informed consent for the placement of gastrostomy tubes. Arch Intern Med 2001;161: 745-748

33. Restraints for Tube Protection Mitts, wraps, pillow immobilization, padding  Social deprivation  Sensory deprivation Physical restraints  Agitation  Distress Chemical restraints  May be utilized out of desperation to protect tube Gillick MR. Rethinking the role of tube feeding in patients with advanced dementia. N Engl J Med 2000;342:206-10

34. “Feeding Tube” Vs “Mechanical delivery of nutritional formula through a tube”

35. American Geriatrics Society: August 2014 Percutaneous feeding tubes are not recommended for older adults with advanced dementia. Careful hand ‐ feeding should be offered; efficacy is at least as good as tube feedings for outcomes of death, aspiration pneumonia, functional status, and comfort. Tube feeding is associated with agitation, increased use of physical and chemical restraints, and worsening pressure ulcers. AGS Ethics Committee and Clinical Practice and Models of Care Committee

36. American Geriatrics Society: August 2014 Efforts to enhance oral feeding by altering the environment and creating individual-centered approaches to feeding should be part of usual care for older adults with advanced dementia Tube feeding is a medical therapy that an individual's surrogate decision-maker can decline or accept in accordance with advance directives, previously stated wishes, or what it is thought the individual would want

37. American Geriatrics Society: August 2014 It is the responsibility of all members of the healthcare team caring for residents in long-term care settings to understand any previously expressed wishes of the individual (through review of advance directives and with surrogate caregivers) regarding tube feeding and incorporate these wishes into the care plan Institutions such as hospitals, nursing homes, and other care settings should promote choice, endorse shared and informed decision-making, and honor individuals' preferences regarding tube feeding. They should not impose obligations or exert pressure on individuals or providers to institute tube feeding

38. Comfort Eating Goal: Enjoyable eating and drinking for patient Labor intensive No prescribed caloric goal Allows family to care for loved one Allows care staff to interact with patient 93 Year-0ld Man with Advanced Dementia and Eating Problems. Susan Mitchell, MD, MPH, Discussant. JAMA 2007;298(21):2527-2535 Formal order: “Comfort Feeding Only” Palacek EJ, Teno, JM, Casarett DJ, et.al Comfort feeding only: a proposal to bring clarity to decision-making regarding difficulty with eating for persons with advanced dementia. J Amer Geriatric Soc 2010;58(3):580-584

41. Principles Established Through the Courts Artificial nutrition and hydration are indistinguishable from other life-sustaining therapy ‘‘Ordinary’’ care vs. ‘‘extraordinary’’ care are meaningless distinctions Providing artificial nutritional support is no more ‘‘basic’’ than dialysis or oxygen delivery The decision to withdraw or withhold nutritional therapy is no different than the decision to start The right to consent to medical treatment is meaningless without the right to refuse medical treatment. DeLegge MH, McClave SA, DiSario JA, Baskin WN, Brown RD, Fang JC, Ginsberg GG. Ethical and medicolegal aspects of PEG-tube placement and provision of artificial nutritional therapy. Gastrointestinal Endoscopy 2005; 62(6): 952-959

42. PEG Tube: Final Decisions Determine as clearly as possible the overall goals of care  Often presented as “What do you want us to do?”  Appropriate questions is “What do you think the patient would want?” Have informed discussion with surrogate decision- makers  Risks and benefits of PEG tube placement  Alternative care options Honor patient’s wishes if documented or if they can be elicited through an appropriate surrogate decision- maker. Mark H. DeLegge, MD, Stephen A. McClave, MD, James A. DiSario, et al. ASGE Task Force on Enteral Nutrition. Ethical and medicolegal aspects of PEG-tube placement and provision of artificial nutritional therapy Gastrointestinal Endoscopy 2005; 62(6): 952-959

44. Summary Advanced dementia has a very poor prognosis Consensus among experts that PEG tube placement in advanced dementia is not beneficial to patient An informed conversation with family member(s) or surrogate decision-makers can clarify expectations but is often omitted