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When patient with advanced dementia stops eating… Dr Yeung, Pui Yu IHGM 30 August, 2013

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When patient with advanced dementiastops eating…

Dr Yeung, Pui Yu

IHGM 30 August, 2013

Case 1 - Mr. Mok

• 83 year old

• Married retired manual worker

• Nursing home resident since June 2011

• Chair bound, ADL depend including feeding

• Mute

• Non-smoker, non-drinker

Past Medical History

• Hypertension, atrial fibrillation, congestive heart failure

• Chronic obstructive pulmonary disease, old pulmonary tuberculosis

• Old ischemic stroke (L cerebral infarct May, 2008)

• Vascular dementia with BPSD

• BPH

• Thyrotoxicosis with RAI

Medication

• Aspirin 80mg daily po

• Pantoloc 40mg daily po

• Alfuzosin prolonged release 10mg daily po

• Becloforte 2 puff bd inhale

• Ventolin 2 puff qid inhale

HPI• Admitted for fever (temp 39.2) and cough with purulent sputum• No SOB• BP 148/71, pulse 128/min, SaO2 99% on 2L O2• Chest transmitted sound, occasional wheezing• wcc 17.4, astrup no CO2 retention; Hb 12.3 g/dL• Cr 95 umol/L, urea 8.4, Na 140, K 4.5 (mmol/L); LFT normal

serum albumin 31g/L, TSH 1 mIU/L• CXR no gross consolidation• Treated as respiratory tract infection with empirical augmentin• Blood/ NPS/ sputum/ urine culture all negative• Fever not response and stepped up to rocephin• Put on IVF due to poor oral intake• Transferred to convalescent bed for further management

Problem list

Active problems

• Chest infection on antibiotic

• Poor feeding

Chronic problems

• HT/ AF

• COPD

• CVA

• Vascular dementia

Input/ output chartbefore transfer

Aftertransfer

Review history of recent two years• He got several episodes of worsen behavioral and psychological

symptoms of dementia in nursing home or when hospitalized due to acute illness. He refused feeding with weight loss of several kilograms– Noted more agitated upon nursing care– Attempted to kick staffs who approached him for nursing

care such as mouth care, feeding, changing diapers, etc– No specific target– No known frightening experience– No recent change of staff– Failed staff’s advice including talk to him before the

procedure• Titrated medication by psychiatrist and wait and see• With time, the behavioral and psychological symptoms of

dementia will lessen and his intake increased

Feeding problem –Interdisciplinary approach

• Assess and manage underlying cause

• Implement nursing care plan for patient with poor feeding– Encourage oral intake by place him at a comfortable

position, reduced distraction, offer assistance, food within easy reach, oral hygiene, small and frequent meals, discuss food preference with wife

– Monitor input and output

• No tooth and not wearing dentures

• Administer IV replacement

• Refer dietitian on dietary regimen and supplement

Feeding difficulties: problem of chewing, swallowing or combination of both

• Refer Speech therapist for swallowing assessment– No choking

– Oral transit time: mildly prolonged

– Swallow reflex: moderate delayed

– Laryngeal elevation: moderate reduced

– Moderate dysphagia with risk of silent aspiration

• VFSS (17/6/2013)– Mild to moderate oral stage and mild pharyngeal stage

dysphagia. No significant penetration or aspiration observed

• Suggested oral feeds as tolerated with D puree diet, mildly thick fluid

Collaboration with family

• Went through the diagnosis, treatment provided and clinical course with wife

• Mr. Mok has advanced dementia with pneumonia and feeding problem

• Wife knew his condition very well and opted for comfort feeding

• Wife came to hand feed Mr. Mok almost twice a day and sometimes prepared his preference food

• With time, even the staff were able to feed Mr. Mok for more than half bowel of meal

Beforedischarge

Case 2 - Mr. Ng

• 84 year old

• Recently moved to private nursing home

• Wife lived in nursing home

• Chair/ bed bound, ADL dependent including feeding

• Mute

• Ex-smoker, ex-drinker

Past Medical History

• Hypertension• BPH and AROU with TURP 2004• Mixed dementia• Vitamin B12 deficiency• HP negative gastritis (11/2010)• Right inguinal hernia with repair on 9/2011• Small left capsular hemorrhage 5/2012, neurosurgery

suggested conservative treatment– Latest CT brain (1/2013) old lacunar infarcts in

bilateral basal ganglia and thalamic regions• Cataract

Medication

• Zestril 20mg daily po

• Hytrin 1mg daily po

• Methycobal 500 microgram tds po

• Senokot 15 mg nocte po

• Admitted for fever (temp 38.2) and vomiting undigested food for 4 times

• No abdominal pain or diarrhea

• wcc 14.9 x10^9/L, Hb 13.3, lymphocyte 1.1 x10^9/L

• Urine multi-stix wcc ++

• Cr 69 umol/L, Na 137, K 3.9 urea 3.9, Ca 2.26 PO4 1.19 (mmol/L), serum albumin 39-> 34; LFT normal

• CXR no gross consolidation

• Treated as urinary tract infection with empirical iv augmentin

• Urine insignificant growth, sputum mixed bacterial morphotypes, blood and NPS both no growth

• TSH 0.76 mIU/L, B12/ folate normal

• Refused oral feeding by staff and only ate when fed by family. He was put on IVF

• Transferred to convalescent bed for further management

Problem list

Active problems

• UTI on antibiotics

• Refused feeding

Chronic problems

• HT

• BPH with TURP

• Hemorrhage stroke

• Mixed dementia

• Vitamin B12 deficiency

Input/ output chartafter transfer

Social history - complicated

• Moved to live in private nursing home for 1 to 2 months

• Previously lived alone

• Wife lived in nursing home

• Attended day care centre Monday to Saturday

• HHS for escort

• Children took turn to take care of his at night time and Sunday

Feeding problem –Interdisciplinary approach

• Assess and manage underlying cause

• Implement nursing care plan for patient with poor feeding– Encourage oral intake by place him at a comfortable

position, reduced distraction, offer assistance, food within easy reach, oral hygiene, small and frequent meals, discuss food preference with children

– Monitor input and output

• Only several teeth missing, not wearing dentures

• Administer IV replacement

• Refer dietitian on dietary regimen and supplement

Feeding difficulties: problem of chewing, swallowing or combination of both

• Speech therapist swallowing assessment before transfer– Bedside assessment: Nil communication. Not cooperative on

approach. Spat out all attempted oral trials– Failed assessment due to feeding refusal

• Speech therapist swallowing assessment after transfer– No speech, no drooling. 5ml thin liquid via syringe and

teaspoon and spat out by patient• Previous Speech therapist management

– KH (6/2012) pureed diet , medium thick liquid– IP (9/2012) pureed diet, slight thick liquid, syringe feeding

as tolerated– OPD (9/2012) mild oropharyngeal dysphagia with choking

on thin liquid via straw-sipping or teaspoon and slight delay in swallowing trigger noted. Suggested pureed diet and slight thick liquid

– DCC (before admission) regular diet

Collaboration with family

• Went through the diagnosis, treatment provided and clinical course with children

• Mr. Ng has advanced dementia with UTI and feeding problem

• Children believed that father would dislike tube feeding and opted for comfort feeding

• Children would come and hand feed Mr. Ng occasionally. They had difficulty to prepare his preference food

• With time, ward staff noticed that Mr. Ng liked noodle very much. He finished the meal quickly with not much struggle

Input/ Output chartfed by children

Input/outputchart

Progress

• When planned to discharge back to OAH…• He developed fever with decreased general condition• Sepsis started iv augmentin empirically after sepsis workup• wcc 8.4, Cr 72 Na 127 K 3 LFT normal• He became too dull for oral feeding and children changed their

mind and wanted RT insertion for feeding• Fever down trend but kick up after a few days• Complicated with HAP with high fever and sputum retention• CXR showed right lower zone consolidation• Later urine grew ESBL E coli sensitive to ciprofloxacin,

ceftazidime and ertapenem and • sputum grew E coli sensitive to gentamicin, cefuroxime,

ciprofloxacin and cotrimoxazole• Complicated with coffee ground aspirated from RT, started on

PPI• Downhill course and succumbed

Feeding and advanced dementia

Mortality from dementia in advance age

• A community-based cohort study followed up subjects aged 75 or older for five years in Sweden

• It evaluated the impact of dementia on the risk of death, taking into account other chronic conditions potentially related to death, and contrasting Alzheimer’s disease (AD), and vascular dementia (VaD)

• 70% of the dementia cases died during the five years after diagnosis, with a mortality rate specific for dementia of 2.4 per 100 person-years

• After controlling for socio-demographic variables and comorbidity, 14% of all deaths could be attributed to dementia with a risk of death among demented subjects twice as high as that for non-demented people

• Mortality risk ratios were 2.0 (95% CI 1.5–2.7) for AD and 3.3 (95% CI 2.0–5.3) for VaD

• This study confirmed that dementing disorders are a major risk factor for death

Hedda Aguero-Torres et al. Mortality from dementia in advance age: A 5-year follow-up study of incident

dementia cases. J Clin Epidemiol 52;8:737–743, 1999

Mortality from dementia in advance age

• Dementia is a leading cause of death in the United States but is under-recognized as a terminal illness

• Dr. Teno pointed out that dementia is the fifth- or sixth-leading cause of death but many people are not ware of dementia is a terminal disease (Gardner, 2010)

Hedda Aguero-Torres et al. Mortality from dementia in advance age: A 5-year follow-up study of incident

dementia cases. J Clin Epidemiol 52;8:737–743, 1999

Clinical course of advanced dementia

• A 18-month, prospective cohort study of 323 nursing home residents with advanced dementia and their health care proxies in 22 nursing homes in Boston (the Choices, Attitudes, and Strategies for Care of Advanced Dementia at the End-of-Life (CASCADE) study)

• to characterize:– residents’ survival– clinical complications– symptoms and treatments

• to determine the proxies’ understanding of the residents’ prognosis and the clinical complications expected in patients with advanced dementia

Susan L Mitchell et al. The clinical course of advanced dementia. N Eng J med 2009;361;16; 1529-1538

Clinical course of advanced dementia

• 54.8% of the residents died over a period of 18months

– the probability of pneumonia was 41.1%

– the probability of a febrile episode was 52.6%

– the probability of an eating problem was 85.8%

• After adjustment for age, sex, and disease duration, the 6-month mortality rate for

– residents who had pneumonia was 46.7%

– residents who had a febrile episode was 44.5%

– residents who had an eating problem was 38.6%Susan L Mitchell et al. The clinical course of advanced dementia. N Eng J med 2009;361;16; 1529-1538

Clinical course of advanced dementia

• Common distressing symptoms, including – Dyspnea (46.0%)– Pain (39.1%)

• In the last 3 months of life, 40.7% of residents underwent at least one burdensome intervention (hospitalization, emergency room visit, parenteral therapy, or tube feeding)

• Residents whose proxies had an understanding of the poor prognosis and clinical complications expected in advanced dementia were much less likely to have burdensome interventions in the last 3 months of life(odds ratio 0.12; 95% CI 0.04 to 0.37)

Susan L Mitchell et al. The clinical course of advanced dementia. N Eng J med 2009;361;16; 1529-1538

Prevalence of feed difficulty in elderly with dementia

• Prevalence of swallowing difficulties in patient with dementia ranged from 13 to 56% (Kannayiram et al. 2013)

• It is estimated that up to 53% of patients with dementia residing in long-term care facilities have dysphagia (Chouinard et al., 1998; Langmore et al., 2002)

• According to CC Chang (2012), using EdFED with cut off score five, the prevalence rate of feeding difficulties in institutionalized elderly with dementia in Taiwan was 60.2%

Edinburgh Feeding Evaluation in Dementia Scale (EdFED scale)• Score answers to Q 1-10: never (0), sometimes (1), often (2)1. Does the patient require close supervision while feeding? 2. Does the patient require physical help with feeding? 3. Is there spillage while feeding? 4. Does the patient tend to leave food on the plate at the end of

the meal? 5. Does the patient ever refuse to eat? 6. Does the patient turn his head away while being fed? 7. Does the patient refuse to open his mouth? 8. Does the patient spit out his food? 9. Does the patient leave his mouth open allowing food to drop

out? 10. Does the patient refuse to swallow? • Total scores range from 0 to 20, with 20 being the most

serious. Scores can be used to track change.11. Indicate appropriate level of assistance required by patient:

supportive-educative; partly compensatory; wholly compensatory

Assistance is already or might be required

Reflect functional or cognitive decline

Level of support required

Stockdell, Ruth et al., The Edinburgh Feeding Evaluation in Dementia Scale : Determining how much help

people with dementia need at mealtime. American Journal of Nursing, 108(8), Aug 2008, p 46-54

Feeding difficulties in advanced dementia

• Common reported symptoms would be pocketing of food in the mouth, difficulties with mastication, coughing or choking with food or fluid and the need for reminders to swallow food (Priefer & Robbins, 1997)

• Problematic eating patterns may include indifference to food, refusal of food, or failure to manage the food bolus properly once it is in the mouth

• Consequence of dysphagia may be dehydration, weight loss, malnutrition and aspiration pneumonia (Easterling & Robbins, 2008; Hudson, Daubert, & Mills, 2000; Mendez, Friedman, & Castell, 1991; Mion, McDowell, & Heaney, 1994; Watson, 1997)

• Aspiration pneumonia has been reported to be a cause of death in patients with dementia (Chouinard, Lavigne, & Villeneuve, 1998; Grasbeck, Englund, Horstmann, Passant, & Gustafson, 2003; Langmore, Skarupski, Park, & Fries, 2002)

• The rate of silent aspiration in patients with dementia residing in long-term care facilities has been reported to be 68% (Garon, Sierzant, & Ormiston, 2009)

Mechanism of effective swallowing• A successful swallow requires input from the cortex, subcortex, brain-

stem, and cranial nerves• Dysphagia is the term used to describe disordered swallowing

regardless of aetiology• It can be a result of behavioural, sensory, or motor problems (or a

combination of these) and is common in individuals with neurologic disease and dementia

• Age-related physiologic changes that can affect swallowing:– Decreased sensitivity of the pharynx and supraglottal area– Loss of dentition that diminishes the ability to manipulate the bolus– Decreased ability to produce saliva– Decreased tongue pressure during bolus transit– Diminished tongue strength– Slower oral and pharyngeal bolus transit movement– Delayed initiation of the pharyngeal reflex– Reduced anteroposterior UES opening during swallowing– A need for larger pharyngeal volume to trigger a reflexive

pharyngeal swallow

Swallowing problems in advanced dementia

• Four overlapping phases describe the movement and modifications of the bolus as it progresses from the mouth through the esophagus and into the stomach

• In the oral preparatory and oral phases, the bolus is mixed with saliva, reshaped, and chewed when needed to ready it for movement into the pharynx. Food consistency, taste, and volume dictate the length of the oral preparatory and oral phase functions

• Contributing factors to oral phase dysphagia include inability to recognize food visually, oral-tactile agnosia, and swallowing and feeding apraxia (Logemann, 1998; Priefer & Robbins, 1997)

• During the pharyngeal phase, breathing ceases momentarily as the bolus is moved through the pharynx

• Pharyngeal phase dysphagia leads to aspiration before, during and after swallowing (Finucane, Christmas, & Travis, 1999)

• In the esophageal phase the bolus moves to the stomach through muscular action called peristalsis. Peristalsis is the product of the reciprocal relaxation and contraction of the circular and longitudinal muscles that make up the esophagus

Different types of dementia and feeding difficulties

• Suh et al. (2009) compared swallowing function in patients with moderate to severe Alzheimer’s disease (AD) and Vascular dementia (VaD) using VFSS

• Patients with AD had significant oral transit delay for liquids (p < 0.008). Hence AD patients in a residential environment required twice as much time to complete meals as non-demented patients with physical impairments

• Patients with VaD showed more deficits in bolus formation and mastication (p < 0.039) and a higher frequency of silent aspiration (p < 0.011)

Patients with dementia are at high risk of worsen feeding difficulties

• They are at high risk of eating and feeding difficulties and inadequate food and fluid intake

• Depending on the severity of their cognitive impairment, they may forget to eat, forget they have eaten, fail to recognize food, or eat things that are not food

• Due to impaired motor skills or visual impairment, they may have difficulty to manipulate eating utensils and moving food or fluid to the mouth

• They may have dental problems or poor oral hygiene, dysphagia and other problems that make chewing and swallowing difficult

• They may have difficulty initiating the eating process, or they may start eating, get distracted, and fail to finish

Patients with dementia are at high risk of worsen feeding difficulties

• Their eating difficulties may have existed before hospitalization, but the problem was worsen in the hospital because demented people often become more confused in an unfamiliar place– Different mealtime routines and foods add to the

problem– There were factors that reduce appetite and food and

fluid intake. E.g., pain, nausea, dental and oral problems, special diets, medications and depression

• Due to their cognitive and related communication impairments, demented patients may not be able tell anyone they are hungry or that they need help eating or more time to chew and swallow. So, when staff members try to help, some of them resist, push the food away, refuse to open their mouths, or spit food out

Interdisciplinary approach• Severely demented person who needs assistance with eating is

best cared for by an interdisciplinary team• The team should includes dietitian, speech therapist,

occupational therapist, dentist, nurse and social worker• A mealtime environment as free of distractions as possible• Poor dental hygiene can diminish a person’s ability and desire to

eat, and so oral care techniques should be reinforced by nurses• Dentist inspects improperly fitting dentures, loose or missing

teeth• Speech therapist assesses any chewing or swallowing problem

and recommend appropriate diet accordingly• Dietitian reviews and recommends appropriate calorie diet and

to consider commercial nutritional drinks between meal snacks• Occupational therapist provides lightweight, sturdy covered cup

to improve demented person’s grip and reduce the likelihood of spilled liquids

Mealtime solutions• Adequate staffing

– gentle reminders to eat and assistance to those in need

• Limit distractions by removing items from the table and dining area– Minimal noise, calming classical music, colourful dishware and few

interruptions have been shown to improve food intake

• Strategic seating– family style seating, fewer people or even one-on-one dining with staff

• Encouraging independence– use of adaptive feeding devices, finger foods, verbal or physical cueing,

hand-over-hand assistance and proper positioning

• Allow adequate time to eat• Offer food first, enhanced foods (nutrient-dense) such as fortified

cereal, potatoes, soups and sauces and supplements last• Add flavours and avoid restricted diet• Decrease caffeine, offer an early dinner or a late-afternoon snack to

encourage better food intake• To avoid dehydration

– Offer fluids multiple times throughout the day– Offer a variety of fluids

Mealtime solutions• Dietary modification: use of thickened fluids• Posture modifications: chin-tuck, supraglottic swallow

maneuver, cervical spine mobilization

• Medications– neuroleptics used in AD patients increased the latency of

swallowing reflex and the risk for aspiration pneumonia (Wada et al. (2001)

– Yamaguchi, Maki, and Maki (2010) reported three cases with the use of dopamine agonists and angiotensin-converting enzyme inhibitors (ACEIs) exhibited prolonged oral intake for a period of seven months up to two years. These medications have been reported to reduce risk of aspiration pneumonia by way of increasing substance P, which enhances both swallowing and the cough reflexes

Decision to types of feeding“We can't just let him/ her starve to death”

• Whether or not to place a feeding tube in a patient with advanced dementia is a difficult problem often faced by family members and health care professionals

• Family and physicians often project sensations of hunger and thirst onto severely demented patients with poor oral intake

• Providing artificial nutrition and hydration have been promoted as a method to improve nutrition, maintain skin integrity by enhanced protein intake, prevent aspiration pneumonia, minimize suffering, improve functional status and extend life

• Family are often attracted to the above perceived benefits• Providing artificial nutrition and hydration has been associated

with caring and nurturing whereas forgoing these measures has been equated with neglect and abandonment

• When family are faced with the decision to provide artificial nutrition and hydration, it seems sensible to provide it by any means

Information on the current status of feeding tube usage

• It is estimated that approximately 30% of all percutaneous endoscopic gastrostomy (PEG) tubes are placed in patients with dementia (Rabeneck, 1996)

• Specific nursing home resident characteristics were associated with feeding tube use– Black residents were almost twice as likely as White residents to

have a feeding tube inserted– Written end-of-life advance directives, do-not-resuscitate orders,

and instructions to avoid artificial hydration and nutrition were associated with lower likelihood of feeding tube insertion

• Research findings suggested that approximately two thirds of nursing home residents with advanced dementia who have feeding tubes had the tubes inserted during an acute-care hospitalization (Gardner, 2010; Teno et al., 2010)

• The decisions about insertion of feeding tubes in patients with advanced dementia are more likely to be based on hospital practices than on the wishes of patients and their families (Mitchell, Kiely, et al., 2003; Teno et al., 2010)

Information on the current status of feeding tube usage

• Surveys with people in nursing homes and family members of people with dementia indicated that majority would prefer not to have a feeding tube inserted at the end stage of life(Gardner, 2010)

• Besides, there is increasing evidence that the use of feeding tubes in patients with advanced dementia does not improve survival, prevent aspiration pneumonia, heal or prevent decubitus ulcers, or improve other clinical outcomes (Kuo, Rhodes, Mitchell, Mor, & Teno, 2009; Sampson, Candy, & Jones, 2009; Teno et al., 2010)

• Tube feeding may actually increase mortality and morbidity and reduce quality of life (Sampson et al., 2009)

• The procedure can be burdensome through tube-related complications and the use of restraints

Comfort feeding

Role of feeding tube in improving nutrition

• Two studies have demonstrated that weight loss increased in amount and frequency as the duration of the tube feeding lengthened (Cioconm, 1988; Kaw M, 1994)

• A sample of 40 chronically tube-fed patients with poor functional and cognitive status demonstrated that weight loss, severe depletion of lean and fat body mass, and micronutrient deficiencies persisted even if generous amounts of standard enteral formulas were provided

• Nutritional markers such as hemoglobin, hematocrit, albumin, and cholesterol levels also did not show any significant improvement after a feeding tube was placed

• The persistent malnutrition in these chronically tube-fed patients in the face of adequate amounts of formula suggest that “the long-term effects of chronic disease, immobility, and neurologic defects may undermine attempts at long-term nutritional support.”

• Negative outcomes may be unavoidable in these patients despite tube feeding

• No evident that tube feeding slows weight loss (Henderson, 1992)Henderson CT, Trumbore LS, Mobarhan S, Benya R, Miles TP. Prolonged tube feeding in long-term care:

nutritional status and clinical outcomes. J Am Coll Nutr 1992;11:309-25

Role of feeding tube in prolonging life• Peck et al. (1990) showed 58% of enterally fed nursing home residents

(NHR) with dementia had aspiration pneumonia as compared to 16% of those fed orally at six months

• Prospective observational study by Mitchell et al. (1997) in NHR with severe dementia found no difference in survival with feeding tube placement (Relative Risk (RR) 0.90, 95% CI 0.67–1.21)

• A cohort study (Mitchell 1998) with 12-month follow-up on 5,266 NHR with chewing and swallowing problems living in Washington– 10.5% of residents with chewing and swallowing problems had a

feeding tube– Residents selected for feeding tube placement have poorer survival

after one year than residents who are not tube-fed (risk ratio, 1.44; 95% CI, 1.17-1.76)

– the feeding tubes are removed in a significant proportion of residents (25%) who survive one year. Residents with a potentially reversible condition, for whom the feeding tubes are a temporary intervention, need to be identified

• Nair, Hertan, and Pitchumoni (2000), in an observational prospective case control study, showed mortality at six months was higher in patients who had a PEG tube (44% vs. 26%, p < 0.03)

Feeding tube insertion for dementia or other diagnoses

• Retrospective cohort study by Sanders et al. (2000) compared survival in patients with dementia who received a PEG tube, to patients who had PEG tube insertion for other reasons (oropharyngeal cancer, stroke, and other neurological injuries)– The 30-day mortality rate was 28% for the group that did not

have dementia, and 54% in the dementia group (p < 0.0001)– The 12 month mortality rate was 63% and 90%, respectively

• Gaines et al. (2009) performed a retrospective cohort survival analysis to compare patients who received PEG tubes for dementia to patients who received PEG tubes for other diagnoses– The 30-day mortality rate was 17.9% and there was no

significant difference in survival between two patient groups

Feeding tube insertion and Health care use• Analysis by Sylvia et al. (2009) on nursing home residents without a

feeding tube. They were followed for up to 1 year to see whether a feeding tube was inserted and then followed for 1 year after insertion to examine health care use and survival– The incidence of feeding-tube insertion was 53.6/1000 residents– Most (68.1%) feeding-tube insertions were performed in an acute

care hospital with the most common reasons for admission being pneumonia, dehydration, and dysphagia

– One year post-insertion mortality was 64.1% with median survival of 56 days

– Within 1 year, 19.3% of those who had a feeding tube inserted required a tube replacement or repositioning within a median 145 days after the initial insertion

– Over 1 year, tube feeding was associated with an average of 9.1 hospitalized days per person, 1.0 hospitalizations, 0.3 emergency room visits that did not result in a hospital admission

• Hence, most feeding tubes are inserted in an acute care hospital. Feeding-tube insertions are also associated with poor survival and significant rate of health care use after insertion

Sylvia Kuo, Ramona L. Rhodes, et al. Natural History of Feeding-Tube Use in Nursing Home Residents With

Advanced Dementia. J Am Med Dir Assoc 2009; 10: 264–270

Role of tube feeding in prevention and treatment of pressure sores• Two retrospective cohort studies demonstrated that during six

months of follow-up, poor oral intake was associated with non-healing pre-existing pressure sores and the formation of new pressure sores (Berlowitz, 1996 and 1997)

• Malnutrition is often cited as a risk factor for developing pressure sores, and feeding tubes are often placed to improve nutritional status and theoretically improve skin integrity

• Retrospective study observed that the incidence of decubitus ulcers was not statistically different between those patients with (21%) and without (13%) feeding tubes (Peck, 1996)

• A MEDLINE search from 1985 to 1994 reviewing the relationship between malnutrition and pressure sores and to gauge the effectiveness of tube feeding in improving the outcomes of pressure sores– The conclusion suggests that the data linking malnutrition and the

development of pressures sores were incomplete and contradictory– “the routine use of tube feeding to prevent or treat pressure sores

is not clearly supported by data” (Finucane, 1995)

Role of tube feeding in preventing aspiration

• Interrupting the cycle of eating, aspiration, and subsequent pneumonia is one of the most commonly cited reasons for using a feeding tube

• Finucane (1996) reviewed existing studies and found no evidence that feeding tubes prevents aspiration in patients with dementia

• In fact, some data have shown that the risk of aspiration is increased (Bourdel-Marchasson, 1997)

• One study examining the risk of aspiration pneumonia in 104 severely demented nursing home patients found that patients with feeding tubes experienced significantly more episodes of aspiration pneumonia (58%) than the patients without feeding tubes (17%; P <0.01) (Peck, 1990)

Site of feeding tube and aspiration prevention

• In assessing whether one site of feeding tube placement was superior to others, investigators compared the incidence of aspiration between patients with jejunostomy tubes and those with gastrostomy tubes

• A meta-analysis of 45 studies between 1978 and 1989 with a total of 2,976 gastric tubes and 386 jejunal tubes found that aspiration rates were highly variable across different patient populations and studies (Lazarus, 1990)

• The authors concluded that there were no data to demonstrate decreased risk of aspiration at one feeding tube site compared with another

• The continued risk of aspiration despite feeding tube placement may result from continued reflux of gastric contents and aspiration of oropharyngeal secretions (Valles, 1995)

Adverse consequences of feeding tube

• Patients fed via gastrostomy experience aspiration at similar rates to those receiving nasogastric feedings

• But gastrostomy tubes causes less discomfort to patients and fewer tube management problems for caregivers

• A jejunal route is necessary either for functional (gastroparesis) or morphological (stenosis, previous esophageal or gastric surgery) reasons

• Short-term stomal complications: Infection, erythema, bleeding, pain, secretion

• Long-term stomal complications: Infection, erythema, bleeding, pain, secretion, ingrowth, abscess

• Long-term tube complications: Blockage, dislocation, tube defect, aspiration

• Nutritional complications: intolerance of enteral feeding, constipation, nausea, vomiting, diarrhoea

Role of tube feeding in maintaining comfort

• Many of those demented patients started on tube feeding were put on restraints either physically or chemically to keep them from removing the tube

• This increase stress and agitation for patients and deprive them of the pleasure of interacting with family members in normal approaches to eating and drinking

• It is impossible to ask patients suffering from severe dementia if they are truly uncomfortable in such a state. But do we need to ask?

Role of tube feeding in maintaining comfort –

“We can't just let him/ her starve to death”

• Consider result from study on thirst and hunger in patients dying with other terminal illnesses

• One study (McClann, 1994) surveyed 32 patients dying of cancer and stroke. The patients had anorexia or profound dysphagia, and they retained sufficient awareness to express sensations of hunger and thirst at least 75% of the time from initial admission until their death

• All those who experienced hunger received small amounts of food for alleviation

• Those who complained of thirst and dry mouth were given mouth swabs, sips of water, ice chips, and lubrication of the lips

• the amount given to attempt to alleviate these symptoms was much less than the amount needed to replenish losses

• Majority of these patients (84%) reported that their thirst and hunger were successfully alleviated by these minimal interventions

Comfort feeding / Hand feeding• A preferable alternative to tube feeding is hand feeding,

which allows the maintenance of patient comfort and intimate patient care

• Alternative oral nutrition programs have been tried including “caregiver hand feeding” of those patients who are not tube feed and unable to take adequate nutrition

• After 6 months of participation in an aggressive nutrition intervention (which included increased nursing or caregiver time for feeding and or presentation of finger foods, as well as oral supplements, environmental analysis, assisted feeding, and positional alterations) improvements were noted in serum albumin levels, but not in weight and body mass index, for 50% of the patient participants

Boffelli S, Rozzini R, Trabucchi M. Nutritional intervention in special care units for dementia. J Am Geriatr

Soc 2004; 52:1216-7

Comfort feeding only• A proposed new order, ‘‘comfort feeding only’’, with the

goal of providing new language to reframe discussions of managing eating problems in patients with dementia

• Comfort refers to the stopping point in feeding, emphasizing that the patient will be fed so long as it is not distressing

• Comfort refers to the goals of the feedings. The feedings are comfort oriented in that they are the least-invasive and potentially most-satisfying way of attempting to maintain nutrition through careful hand feeding

• “Comfort feeding only” provides an individualized care plan stating what nursing home staff will do to ensure the comfort of the patient during hand feeding, if possible

Eric J. Palecek er al. Comfort Feeding Only: A proposal to bring clarity to decision-making regarding

difficulty with eating for persons with advanced dementia. J Am Geriatr Soc 58:580–584, 2010

Comfort feeding only• This order differs from other written medical orders such

as do not resuscitate (DNR), do not intubate (DNI), and do not tube feed in that the focus is on what is done for the patient to promote comfort, rather than simply forgoing an action such as resuscitation, intubation, or tube feeding

• “Comfort feeding only” provides for continued attempts to hand feed the patient as long as it is not causing distress

• When the patient is unable to eat without significant distress, the care plan for “Comfort feeding only” calls for a form of continued interaction with the resident, which could include assiduous mouth care, speaking to the resident, and therapeutic touch

Eric J. Palecek er al. Comfort Feeding Only: A proposal to bring clarity to decision-making regarding

difficulty with eating for persons with advanced dementia. J Am Geriatric Soc 58:580–584, 2010

Comfort feeding only• In advanced dementia, apraxia and attention deficits interfere

with self-feeding, and dysphagia causes choking or food avoidance

• Feeding problems cause important health effects such as weight loss, dehydration, poor wound healing, and pneumonia

• There are measures to deal with the above feeding problems• Modifications of oral feeding such as high-calorie supplements,

appetite stimulants, modified foods, enhanced dining environments, and personal assistance

• These treatments can be offered alone or in combination as an alternative to tube feeding

• They help demented patient with feeding problems to gain weight but are unlikely to improve other outcomes

Laura C. Hanson, Mary Ersek, Robin Gilliam and Timothy S. Carey. Oral Feeding Options for People with

Dementia:: A Systematic Review. J Am Geriatric Soc 59:463–472, 2011

Recommendations for Oral Feeding in Patients with Severe Dementia Preventing aspiration

pneumonia for those at risk

• Sit the patient upright (45 degrees) while eating

• Bolus size of less than one teaspoon

• Restrict clear liquids• Place food well into the

mouth• Encourage gentle coughs

after each swallow• Remind to swallow

multiple times after each mouthful of food to clear the pharynx

Strategies to improve food intake • Use strong flavors, eg. Gravy, juices, enrichers

(cream, spices), sweets (chocolate bars)• Use varying amounts of food

– Try finger foods, use preferred foods in large quantities (e.g., ice cream)

– Adapt food consistency– Try liquid supplements (given one to two hours

before the next meal; it can promote satiety)– Try slightly thickened food (puddings, milkshakes)– Try blending foods (cereals mixed with pudding)

• Make food available to the patient– Lengthen mealtimes because it takes longer for

demented patients to ingest, chew, and swallow food– Allow patients to keep their supplements (e.g., liquid

supplements and/or candy bars) at the bedside

• Modify environmental factors– Capitalize on the midday meal when patients

demonstrate maximal cognitive function

• For those resistive or combative at mealtime, try holding hands or reassuring touches on the arms, or try cheerful conversations or singing softly

Feeding choices and Religious traditions

• Among Orthodox Jews, implementing tube feeding for a family member with progressive dementia is standard (Cooper-Kazaz et al. 1999)

• Roman Catholic position on the issue of tube feeding is that there is a “presumption in favor of providing nutrition and hydration to all patients, including patients who require medically assisted nutrition and hydration,” but with the significant caveat that an intervention is indicated only if it is “of sufficient benefit to outweigh the burdens involved to the patient.”

Hedda Aguero-Torres et al. Mortality from dementia in advance age: A 5-year follow-up study of incident

dementia cases. J Clin Epidemiol 52;8:737–743, 1999

Cost effectiveness• Mitchell and colleagues (2003) made a cost comparison of tube-

fed versus hand-fed dementia patients over a 6-month period and found that the daily nursing care cost was higher for those who were hand fed

• But this generated a higher daily reimbursement rate from Medicaid in many states for tube-fed dementia patients

• Boseley (2010) also concluded it is more cost effective to insert a feeding tube than to invest staff time in feeding patients by mouth

• Nursing homes are tightly regulated and both weight loss and dehydration are used as indicators of poor quality care

• Hence, nursing homes may have pressure to use aggressive interventions and financial incentive to tube feeding residents

Mitchell SL, Buchanan JL, Littlehale S, et al. Tube-feeding versus hand-feeding nursing home residents with

advanced dementia: a cost comparison. J Am Med Dir Assoc 2004;5:S23-9

Appetite stimulants• Reubern er al. found that Megestrol acetate at doses of 400mg

and 800mg increases prealbumin in recently hospitalized older persons with impaired appetite

• Cortisol suppression is common at higher doses and may be persistent

• the drug did not confer benefit on other nutritional or clinical outcomes (Appetite, health-related quality of life, and adverse effects)

• Yeh et al. showed that 61.9% of Megestrol acetate treated patients had gained 1.82 kg (4 lbs) compared to 21.7% of placebo patients

• The treated patients also reported significantly greater improvement in appetite, enjoyment of life, and well being

• There was no difference in survival between MA and placebo groups

Reubern et al, The Effects of Megestrol Acetate Suspension for Elderly Patients with Reduced Appetite After

Hospitalization: A Phase II Randomized Clinical Trial. J Am Geriatr Soc 53:970–975, 2005.

Yeh et al. Usage of Megestrol acetate in the treatment of anorexia-cachexia syndrome in the elderly. The

journal of Nutrition, Health and Aging vol 13, num 5, 2009 p 448-454

Appetite stimulants• Robert K. Persons et al. studied the use of stimulate megestrol acetate oral

suspension at 400mg or 800mg daily in malnourished elderly patients• The results showed a statistically significant increase in patient appetite and

a dose-responsive increase in prealbumin level• There was no significant improvement in serum albumin or clinical

endpoints (weight, functional status or health-related quality of life)• The potential adverse effects of megestrol are diarrhoea, cardiomyopathy,

palpitation, hepatomgely, leukopenia, edema, paresthesia, confusion, convulsion, depression, neuropathy, hypesthesia and abnormal thinking, thrombophlebitis, pulmonary embolism and glucose intolerance

Recommendations from American Geriatric Society on appetite stimulation• There are no FDA-approved drugs available for the promotion of

weight gain in older adults• A minority of patients receiving mirtazapine report appetite stimulation

and weight gain• All drugs used for appetite have substantial potential adverse events

Robert K. Persons et al. Should we use appetite stimulants for malnourished elderly patients? Journal of family

practice, vol 56, no 9, sep 2007, p761-2

Conclusion• Eating/ feeding problem in advanced

dementia should be tackle with interdisciplinary approach

• Only minority of them have advance directives and many advance directives fail to address artificial nutrition and hydration

• In the absence of a clear directive, health care professionals rely on family or surrogates to participate in the decision regarding a feeding tube

• Discussions of feeding options should include risks and benefit of tube feeding and the availability of alternatives

• It is the way to safeguard the best interest of patient and at the same time not putting too much pressure on surrogates in the decision making

Take home messages -When person with advanced dementia stops eating?

• Look for the etiology of the feeding problem, focusing on reversible causes such as depression, medications (causing dry mouth or anorexia) and the type and presentation of the food

• Empirically modify the food: to discontinuing restrictive diets, modifying the consistency of the food, using finger foods (for those with oral apraxia), and presenting one item at a time

• Consider a swallowing evaluation• Alert the family or health care proxy that a feeding problem has been identified,

indicate what evaluation has already occurred, what is planned, and begin to elicit preferences for care. Clarify to them that the resident has advanced dementia and stress that feeding problems are characteristic of this condition

• If the feeding problem persists, discuss with the family the evaluation and empiric treatment that have taken place

• Discuss palliative care as an option• Indicate that tube feeding is sometimes instituted in this setting if there is

compelling reason to believe that the patient would have wanted artificial nutrition and hydration. Let the family know that tube feeding has not been shown to be a superior choice

• Recommend the use of hand feeding to whatever extent it is tolerated, and explain that this approach is conducive to maintaining comfort

Thank you for your attention

&

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