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W. DAVID CLARK, MDNOVEMBER 18, 2015
Nutrition Considerations in Advanced Dementia
Disclosure
I have no financial interests or relationships with any manufacturers of products or providers of services that I may reference in my presentation.
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
Palliative Care: Your Initial Thoughts?
HospiceBrink of deathDepressingThe people who come in when there’s
nothing more doctors can doNice people, but hope I never need them
Palliative Care initiates conversations that address sufferingAny age, any stage of illness
“I hate to sound this way, but why me? Why me with dementia?”
Pat Summitt
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
Irreversible Dementias
Alzheimer’s dementiaMulti-infarct dementiaParkinson diseasePicks diseaseHuntington choreaHIV-associated dementia
Clinical Course of Advanced Dementia
323 nursing home residents with advanced dementia
22 NH; resident + HC proxy followed 18 monthsAverage age 85.3 yrs85% femaleDementia
Alzheimer’s 72.4 % Vascular 17% Other 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 careCommunication to Proxy:18% had received prognostic information
from a physician32.5% 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
Adjusted 6 month mortality:One episode of pneumonia 46.7%Febrile episode 44.5%Eating problems 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
Clinical Course of Advanced Dementia
Distressing symptoms occurring sometime in 18-month 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%
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 pneumoniaAny evidence of perceived caloric advantages are
outweighed by the adverse effects of tube feedingNo evidence of prolonged survival in demented
patients with dysphagiaNo evidence of pressure sores being prevented or
improved by tube feedingsNo evidence of functional decline mitigated or
functional status improvedNo 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
PEG Complications
484 patientsAll 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
PEG Complications
Surveillance: Mortality Leakage Diarrhea Constipation Abdominal pain Fever Peristomal infection
Complication at 2 Months
Diarrhea 10%Leakage 8%Peristomal infection 6%Fever 1%18% died within 2 months of PEG insertion
Inadvertent Tube Removal: Mature Tract
Typically occurs in combative or confused patients
PEG tube tract requires ~ 4 weeks to matureIf mature, a Foley catheter or replacement tube
can be reinsertedTract 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 healNew PEG tube can be placed in a few days at
a different site Replacement will require another endoscopyIV antibiotics for minimum of 7 days and
observed for signs of peritonitis
Gastrostomy tubes: Complications and their management Mark H. DeLegge, MD, FACG UpToDate
PEG Origin
First introduced in 1980 as a way to deliver nutrition to critically ill children
PEG placement after initial evaluation for severe dementia:3.8% of patients in Nebraska41.8% 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
“The biggest problem with communication is the illusion that it has occurred.”
George Bernard Shaw
Informed Consent: Is It Adequate?
154 consecutive hospitalized pts (1 year) with advanced chronic illness who underwent feeding gastrostomy
4 categories of illness Acute stroke 35.7% Chronic dementia 20% Other neurologic conditions
14.9% Non-neurologic conditions with failure to thrive
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?
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?
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?
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
aspirationConsultant sees pt, agrees gastrostomy neededProcess suggests “inevitability”
AS Brett; JC Rosenberg The adequacy of informed consent for the placement of gastrostomy tubes. Arch Intern Med 2001;161: 745-748
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”
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
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
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
Comfort Eating
Goal: Enjoyable eating and drinking for patientLabor intensiveNo prescribed caloric goalAllows family to care for loved oneAllows 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 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
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
