Disclosure
Tube Trap? Nutrition Considerations in Advanced Dementia W. DAVID CLARK, MD
I, W. David Clark, MD have no financial interests or relationships with any manufacturers of products or providers of services that I may reference in my presentation. I have no financial relationships with any of the companies supporting this educational event. I will not discuss any pharmaceuticals, medical procedures, or devices that are investigational or unapproved for use by the FDA.
2015
Objectives
Palliative Care
Briefly review the technical aspects of percutaneous
Conversations
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 Discuss the role of advanced care planning in facilitating decisions re: tube nutrition
Goals of Care Support
“The biggest problem with communication is the
illusion that it has occurred.” George Bernard Shaw
Statistics Alzheimer’s dementia: 6th 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
“I hate to sound this way, but why me? Why me with dementia?” Pat Summitt
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Irreversible Dementias
Clinical Course of Advanced Dementia
Alzheimer’s dementia
323 nursing home residents with advanced dementia
Multi-infarct dementia
Average age 85.3 yrs
Parkinson disease
85% female
Picks disease
Dementia Alzheimer’s Vascular Other
Huntington chorea HIV-associated dementia
72.4 % 17% 12.7%
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
Clinical Course of Advanced Dementia Proxy Perspective: 96% believed that comfort was the primary goal of care 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
Clinical Course of Advanced Dementia Distressing symptoms occurring sometime in 18month F/U: Dyspnea > 5 days/month 46% Pain > 5 days/month 39% Pressure ulcers (Stage II or higher) 38.7% Agitation 53.6% Aspiration 40.6%
Clinical Course of Advanced Dementia Adjusted 6 month mortality: One episode of pneumonia Febrile episode Eating problems
46.7% 44.5% 36.8%
Mitchell SL, M.D., Teno, JM, Kiely DK, Shaffer ML, et al. The clinical course of advanced dementia. NEJM 2009; 131(16): 1529-1538
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 Mitchell SL, M.D., Teno, JM, Kiely DK, Shaffer ML, et al. The clinical course of advanced dementia. NEJM 2009; 131(16): 1529-1538
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
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PEG Complications 484 patients Indications for PEG
Tumors (44%) Head/neck cancer Gastric/esophageal cancer Neurological disorders (45%) Stroke Neurological disease other than stroke Dementia (2% of cohort) 18% died within 2 months of PEG insertion
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
Complication at 2 Months
Inadvertent Tube Removal: Mature Tract
Diarrhea 10%
Typically occurs in combative or confused patients
Leakage 8%
PEG tube tract requires ~ 4 weeks to mature
Peristomal infection 6% Fever 1%
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
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
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PEG Origin First introduced in 1980 as a way to deliver nutrition
to critically ill children
Geographic Variation 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
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Informed Consent: Is It Adequate? 154 consecutive hospitalized pts with advanced
chronic illness who underwent feeding gastrostomy 4 categories of illness Acute stroke Chronic dementia Other neurologic conditions Non-neurologic conditions with failure to thrive
35.7% 20% 14.9% 29%
Brett AS; Rosenberg JC The adequacy of informed consent for the placement of gastrostomy tubes. Arch Intern Med 2001;161: 745-748
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
Informed Consent: Is It Adequate? Cumulative Mortality In Hospital 16.9% 30 Day 31.8% 1 year 50%
AS Brett; JC Rosenberg The adequacy of informed consent for the placement of gastrostomy tubes. Arch Intern Med 2001;161: 745-748
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
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
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System Incentives for Gastrostomy
NH Characteristics and Tube Feedings in Patients with Advanced Cognitive Impairment
“Do something” when prognosis is poor
Full time speech therapist on staff
Financial Gastroenterologists Hospitals Nursing homes
More licensed nurses rather than nurse assistants Larger facility Higher proportion of Medicaid beds
Avoid institutional adverse publicity Sanctions Liability Finucane TE; Christmas C; Leff BA Tube feeding in dementia: how incentives undermine health care quality and patient safety. J Am Med Dir Assoc 2007 May; 8(4) 204-208
Absence of Alzheimer’s unit [high staff/pt ratios] Pressure ulcers in > 10% of residents Higher proportion of residents w/o advanced directives Higher proportion of residents with total functional
dependency Mitchell SL, Kiely DK, Gillick MR Nursing home characteristics associated with tube feeding in advanced cognitive impairment. J Am Geriatr Soc 2003;51:75–79
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
“Feeding Tube” Vs
“Mechanical delivery of nutritional formula through a tube”
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Choosing Wisely: AAHPM
American Geriatrics Society: August 2014
1) Don't recommend percutaneous feeding tubes in
Percutaneous feeding tubes are not recommended
Careful hand‐feeding should be offered; efficacy is at
patients with advanced dementia; instead, offer oralassisted feeding 2) Don't delay palliative care for a patient with serious illness who has physical, psychological, social, or spiritual distress because they are pursuing disease-directed treatment 3) Don't leave an implantable cardioverter-defibrillator activated when it is inconsistent with the patient/family goals of care 4) Don't recommend more than a single fraction of palliative radiation for an uncomplicated painful bone metastasis 5) Don't use topical lorazepam (Ativan®), diphenhydramine (Benadryl®), and haloperidol (Haldol®) (ABH) gel for nausea These recommendations and their supporting rationale should be considered by physicians, patients, and their caregivers as they collaborate in choosing those treatments that do the most good and avoid the most harm for those living with serious illness
American Geriatrics Society: August 2014 Efforts to enhance oral feeding by altering the
for older adults with advanced dementia. 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
American Geriatrics Society: August 2014 It is the responsibility of all members of 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
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.
Moral vs Scientific Decision-making
Hunger and Thirst: What Do Alert Patients Say?
Nutrition is Symbolic of Caring
Comfort Nurturing
Fears of Starvation
Guilt of “not doing enough” Family pressure
Belief that QOL enhanced Personal religious beliefs
(not specifically discussed in article cited)
Gillick MR, Volandes AE The standard of caring: why do we still use feeding tubes in patients with advanced dementia? J Am Med Dir Assoc. 2008 Jun;9(5):364-7
32 competent pts admit to comfort care unit over 1 yr Food/fluids offered to all, ingested as pts desired Hunger: 63% had no hunger @ admission; only 1 pt
had hunger @ death No pt consistently consumed > 25% calculated daily
fluid/calorie requirement Thirst/Dry Mouth: 38% were experiencing @ death Relieved in all pts with mouth care + ice chips McCann RM, Hall WJ, Groth-Juncker A. Comfort care for terminally ill patients. The appropriate use of nutrition and hydration. JAMA 1994;272: 1263-1266
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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
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
PEG Tube: Final Decisions Determine as clearly as possible the overall goals of
care
As the patient would express them 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 a 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
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Advanced Care Planning Health Care Power of Attorney Person designated by patient to legally speak for the patient POA-HC should “speak patient’s voice” POA-HC able to accommodate to dynamics of healthcare Activation
Pt is non-decisional Pt knowingly and voluntarily transfers decision-making to POA-HC
Living Will Pt’s guide to surrogate decision-makers and clinicians Specific directives are most helpful Static document
Iowa Living Will Template DECLARATION RELATING TO LIFESUSTAINING PROCEDURES “incurable or irreversible condition” “death within a relatively short period of time” “reasonable degree of medical certainty there can be no recovery” “withhold or withdraw life-sustaining procedures that merely prolong the dying process……….” This declaration is subject to any specific instructions or statement of desires I have added in "Additional Provisions" below.
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 Completion of advanced care planning documents should be encouraged for all patients with decisionmaking capacity
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