Download Feeding, Swallowing and Nutritional Challenges in the

Feeding, Swallowing and
Nutritional Challenges in the Older
Adult with Dementia:
Considerations in Guiding and
Supporting
Decision-Making
Paula A. Sullivan, MS., CCC-SLP, BCS-S
North Florida/South Georgia Veterans Health Administration
[email protected]
Decision-Making In the Individual
with Dementia
• Problems with swallowing, feeding, and nutrition are common
in the elder with dementia and often emerge during an acute
event, when prognosis is unclear
• When this crisis situation occurs, solutions are extremely
limited, fraught with emotion, and made with limited
evidence regarding the most appropriate goals of care
Feeding Tubes in Advanced Dementia
• Despite the complete lack of evidence
supporting benefits of FTs in this population
(Finucane, Christmas, & Travis, 1999) and the high likelihood of
significant burdens and risks, their use
remains prevalent
• Feeding tubes are used in about one third of
all nursing home residents with advanced
dementia (Sampson, Candy, & Jones, 2009)
Alzheimer’s disease is THE most
frequently encountered
neurodegenerative disease
Dementia
• Over 100 causes of dementia
• Variety of dementia makes treatment extremely
difficult
• Big four that make up 94-98% of dementias
– Alzheimer’s – 65% (affects the hippocampus at the base of the
cortex)
– Lewy body (affects the entire brain, so symptoms are wideranging and unpredictable)
– Frontotemporal (Pick’s disease) (affects the frontal and
temporal lobes in the front and sides of the brain); may occur in 5% of
ALS pts)
– Vascular (affects the entire brain, so symptoms can vary widely)
Epidemiology of Dementia
(Alzheimer’s Association, 2010)
• Of Americans 65 and older, 1 in 9 has
Alzheimer’s disease (AD)
• 1 in 3 people age 85 and older has AD
• AD is the most common form of dementia
• The number of persons with AD is projected to
increase from 5.1 million in 2014 to up to 16
million in 2050
Epidemiology of Dementia
• Median survival after the onset of symptoms
in dementia ranges from 3-6 years (Larson et al.,
2004)
• Approximately 70% of persons with dementia
die in nursing homes (Mitchell et al., 2005)
• Advanced dementia meets accepted
standards of an end-of-life condition but it is
not widely accepted as a terminal illness (Mitchell
et al., 2004; Morrison & Sie, 2000)
Typical Clinical Course of Advanced
Dementia
• “Sentinel events”
• Eating difficulties and recurrent infections are
common complications such as UTIs
• Pneumonia is the immediate precipitating
cause of death in more than 50% of cases (Chen
et al., 2006)
Dementia Dysphagia
• Eating problems are the hallmark of end-stage
dementia because the ability to eat independently is
generally the last activity of daily living to be lost
prior to death (Chen et al., 2007)
• As dementia progresses, swallowing problems
become more pronounced
• Dysphagia can be the result of behavioral (cognitive),
sensory, motor problems (or combination)
Is Dysphagia a Terminal Symptom?
(Regnard, Leslie, et al., 2010)
• In Alzheimer’s dementia, dysphagia can occur
early in the disease process and is not always
a terminal symptom as commonly believed
(Preifer et al., 1997; Royal College of Physicians and the British Society of
Gastroenterologist, 2010)
• Can be missed because of poor screening,
atypical presentations, and care provider
adjustments to its presence
Evolving Role of the SLP in Dementia
Dysphagia Intervention
• We will be increasingly faced with the
challenges of the older individual with
dementia
• With that come accompanying health and
economic challenges
• This will lead to increasingly complex choices
and decision-making for the SLP
Decision-Making In the Individual
with Dementia
Course goals:
1. Provide a model for addressing ethical dilemmas
2. Talk about the importance of early and periodic
interdisciplinary assessment to hopefully avoid crisis
situations
3. Discuss decision support tools to assist team and family
Case Presentation 1
• Consult from PCP: “Elderly man has difficulty swallowing
some foods, especially meats, despite modifications such as
grinding. Your assessment and recommendations will be
appreciated.”
• 92 year old man with history of dementia residing with family
• Family manages medication. Pt walks alone at home;
otherwise uses a cane or walker.
• Dysphagia complaints:
Per daughter, 6 month history of
c/o food sticking, coughing with liquids for at least 6 months.
• Only mild gradual weight loss; no recent chest colds or PNA
Case Presentation 2
• 84 year old man presented to ED with
diagnosis of advanced dementia admitted
with UTI
• Declining ability to perform ADL’s,
FTT/refusing food and feeding, dehydrated
• Lived alone, no known family or AD
Case Presentation 3
• 84 year old patient with Parkinson’s admitted for altered MS and poor oral
intake on 2/12/13
– limb jerking, hallucinations; family report of declining functioning at
home
– Multiple ED visits during prior month with comparable presentation
– Well known to Speech service for a 3 year period for both LSVT and
periodic dysphagia evaluation and intervention
– AD on file stating DNR/DNI
• Most recent VFSS 1 month ago demonstrated:
– moderate oropharyngeal dysphagia with silent, thin liquid aspiration
– aspiration managed with 10cc Provale cup or nectar thick liquids
– patient clearly expressed wishes regarding QoL and against Provale
cup and thickened liquids
Case Presentation 3
• No clearly identifiable reason for delirium and
poor oral intake
• Wife, daughter, and care giver present at time
of bedside assessment
• Clinical Swallowing Observations:
psychosis/delirium; unsafe for any oral intake;
family ADAMANT about desire for comfort
care
Decision-Making
• If you were informed that you had
six months to live, would you:
-Want to know?
-Don’t want to know?
-Not sure?
-Need more time to think about it?
What is Ethics?
• System of moral principles that helps
differentiate between choice that are good
and those that are bad (Gabard & Martin, 2011)
• Sometimes this is very easy; most times it is
VERY complex
• Thus, ethical frameworks can assist us
How do you set aside your own
views when helping patients, family
members, and significant others?
What Are You Thinking?
• Perform a self-assessment – reflect on your
own beliefs and values
• Explore possibility of personal biases
• Avoid judgment
SLP Misconceptions About PEG in Advanced
Dementia (Sharp & Shega, 2009)
• Sharp and Shega mailed a survey to geographically stratified
random sample of 1,050 medical SLPs to determine beliefs and
practices about use of PEG in pts with advanced dementia
– Response rate of 57%
– 56% of SLPs recommend PEG (many believe that PEG
improves nutritional status and increases survival; many
believed that PEG improves nutritional status and increases
survival; relatively few believed that PEG improved functional
status or QoL
– Nearly 40% believed that PEG was standard of care while
15% believed it should be
– Only 11% of SLPs would want a PEG themselves
Physicians’ End-of-Life Attitude Scale (PEAS)
(Levetown, et al., 2000)
• Outcome measure for palliative care
education (38 questions)
• Assesses the willingness of medical trainees to
care for dying patients
• Data indicated that for some persons, life
experiences may lessen difficulties in dealing
with dying patients, while for others, personal
losses may exacerbate such concerns
Personal Journey
Autonomy
• Respect for a person's worth and right to
make decisions
• Person’s should have control over their own
destiny and be able to make decision that
determine their fate
• When making a decision, the individual should
be free from interference and undue
influences by others and for avoidable
obstacles
Examples of Autonomy
• SHARED DECISION-MAKING
• Persons should be aware of pros and cons of
each option
• Information should be presented both verbally
and in written form
• Provide information into segments to allow
the individual the time to fully review and
comprehend
Beneficience
• TAKE POSITIVE ACTIONS TO DO GOOD FOR
OTHERS AND ACT TO PREVENT OR REMOVE
HARM
• Weighing probably benefits against potential
risks of harm
• Assess swallow function
• Recommend ways to make swallowing
preferred liquids and solids easier and safer
Nonmaleficense
• DO or INFLICT NO HARM; WHAT WE DO
SHOULD HAVE A GREATER PROBABILITY OF
HELPING THAN OF HARMING
• An unappealing diet may reduce patient
coughing and distress but could result in
decreased intake and dehydration
Justice
• PROVIDE WHAT PATIENTS NEED IN A FAIR AND
EQUITABLE MANNER; fair distribution of
resources
• Will cost of VFSS influence our plan of care?
Health Care Decision-Making
• Health care facilities are obligated to provide written
information about a patient’s rights to make
decisions about care
• This includes: right to accept or refuse medical or
surgical treatment and the right to make advanced
directives
• If the patient has decision-making ability the
patient’s agreement or refusal must be an informed
consent
Health Care Decisions
• Capacity – person making the decision is able
to understand the facts of a situation and
understand how the decision is personally
relevant
• Competence or incompetence – determined
by a judge
Determining Decisional Capacity
(Reichman, Streim, Karlawish, & Lobel, 2009)
• Understanding – comprehend relevant information
and the choice to be made
• Choice – ability to clearly state a preference and to be
consistent in the expression of this preference
• Appreciation – the ability to understand how the facts
of the situation and decision are personally relevant
• Reasoning – ability to weight pros and cons and
understand the impact of choices
When determining decision-making capability, we must
balance the principle of autonomy with beneficence.
This requires education and time.
Importance of Patient Education
• O’Brien et al. (1995) conducted a study of 421
randomly selected, competent persons living
in 49 NHs
• Only 1/3 would favor a FT if unable to eat due
to permanent brain damage
• 25% of those who initially favored FTs changed
their minds when they learned that they
might have to be physically restrained
Advance Care Planning
• Living Will – legal document that specifies the type
of medical treatments and life-sustaining measures a
person’s would not want in case of end-stage
condition, vegetative state such a artificial feedings/
In AD, a person is not considered terminally ill until
the later stages
• Medical Power of Attorney – individual names a
healthcare proxy to make medical decision for
him/her in the event they are unable to
Proxy Role - “substituted judgment”
Elements of Decision Making Capacity
(Casper, 2012)
• Comprehension – if patient lacks
understanding, a proxy may make these
decisions
• Choice – the patient should be able to
consider more than one alternative
• Consequences – the patient should appreciate
the risks and benefits of a choice
• Coercion – the patient must not fear reprisal
as a result of making a decision
Integrative,
Comprehensive
Management
Eating, Feeding, and Swallowing
Disorders in Dementia
• Eating: The action of managing food on the plate, using
implements, placing food in the mouth, chewing the food,
and propelling it through the mouth, pharynx, and esophagus
into the stomach
• Feeding: Generally the same as eating. Both include the
social, behavioral, and motor control needed to get oral
nutrition
• Swallowing: The actions involved in physically placing food in
the mouth, chewing, and the oral, pharyngeal, and
esophageal stages of the swallow
Early Identification
• “Early identification and impeccable assessment” (and
counseling) once disease is suspected or identified
• In Alzheimer’s dementia, dysphagia can occur early in the
disease process and is not always a terminal symptom as
commonly believed (Preifer et al., 1997; Royal College of
Physicians and the British Society of Gastroenterologist, 2010)
• Regular monitoring and management man prevent
complications (FTLD may lead to swallowing deficits),
yield prognostic information, and optimize management
Periodic Assessment
• Ensure the highest level of functioning during
disease course and to make sure the wishes of
the surrogate and patients are honored with
changes over time
• Quarterly screenings
• Periodic monitoring by health care team
Dysphagia in Alzheimer’s Dementia
(Horner and colleagues, 1994)
• Prospective study of 25 pts with moderate or severe AD
evaluated
– Only 4 showed normal performance
– 6/25 (28.6%) aspirated; higher aspiration with more severe
dementia
– Most prevalent abnormalities: delayed pharyngeal
response, prolonged oral phase, inefficient pharyngeal
clearance
– Severity of swallow on VFSS correlated with severity of
dysphagia
-
Eating and Swallowing in FTD and AD
(Ikeda et al., 2002)
• Questionnaire to relatives of 91 patients with
FTLD (FTD and SD) and AD; swallowing not
formally assessed
• 30/36 questions probed for changes in
appetite, food preference, eating habits, oral
behaviors
• 6 probed swallowing problems
• Severity of dysphagia was similar for both
groups
Eating and Swallowing in FTD and AD
(Ikeda et al., 2002)
• Frequency of reported problems was higher in
the FTLD group than AD, especially for the
eating domains
• Overall, dysphagia symptoms were the least
reported problems in all patient groups,
occurring in 20-30% of patients
• AD pts developed swallowing symptoms
earlier in disease course than patients with
FTD and SD
Dysphagia in FTLD
(Langmore and colleagues, 2007)
• 21 pts with 3 variants of FTLD (9 w/ FT
dementia; 7 w/ progressive nonfluent aphasia;
5 w/ semantic dementia)
• FEES assessment
• Of 21 patients, 4 caregivers reported
swallowing difficulties
• FEES revealed moderate dysphagia in 12/21
pts
Dysphagia in FTLD
(Langmore and colleagues, 2007)
• Abnormalities were not explained by
compulsive eating behaviors but seemed to
reflect deficits in cortical and subcortical
pathways connecting with brainstem
swallowing center
• Conclusions: Swallowing abnormalities are
found in many patients with FTLD. The
appearance of dysphagia signals progression
of FTLD to brain stem systems
Dysphagia in Parkinson’s Disease
• 50-60% of patients experience oral,
pharyngeal and esophageal phase dysphagia
(Lieberman et al., 1980; Fuf et al., 1997)
• Oral stage deficits: lingual tremor at rest,
multiple lingual gestures during oral bolus
manipulation and propulsion
• Pharyngeal stage deficits: decreased laryngeal
elevation, incomplete UES relaxation,
pharyngeal residue, aspiration
Most Frequent Swallowing Disorders
• Apraxia of Swallow (can be related to
haloperidol use)
• Delayed Pharyngeal Swallow - often talking
during the delay with bolus in pharynx particularly in FTD
• Impaired pharyngeal swallow
-Reduced tongue base retraction
-Reduced laryngeal elevation
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Eating/Feeding Disorders
Most Frequent Feeding/Eating
Disorders
• Visual agnosia for food – failure to
recognize food as edible
• Distractibility
• Eating apraxia – inability to use eating
utensils
• Tactile agnosia for food - failure to
recognize food as something to swallow
in the mouth
Other Frequent Feeding/Eating
Disorders
• Absent or continuous chewing
• Pocketing food
• Spitting food
• Multiple swallows
• Food refusal
• Compulsive, rapid, careless eating
leading to airway obstruction and
asphyxia
Medical and Swallowing
Evaluation
Clinical Evaluation
• Is there an advanced directive?
• What are the patients/family’s understanding
of status?
• What are the patients/family’s goals of care?
Medical Evaluation
• Should consider problems with eating and
swallowing as a clinical syndrome that trigger
a medical assessment and work-up
• Many factors are potentially reversible
necessitating careful search
• Obtain a clear understanding of baseline
medical problems, functional status, mental
status, stage of dementia, and baseline eating
status
Medical Evaluation
• Rule-out acute medical problems (e.g. infection,
stroke, medication adverse effects, delirium) or other
potentially reversible causes of eating problems
• Look for associated disorders that may worsen
cognitive impairment
– Depression
– Sleep disorders – idiopathic insomnia, nocturia,
pain, sleep apnea, restless limb
syndrome/periodic limb movements of sleep
Antipsychotic Medications
(Knol et al., 2008)
• 60% increase pneumonia risk demonstrated on a
case-control study of elderly patients
• Most events with atypical antipsychotics (Clozapine,
Abilify, Risperdal)
• Typical drugs: sedation (haloperidol, chlorpromazine)
•
Look at other drugs that potentially incraese cognitive impairement
(neuroleptics, anticholonergic drugs, antihistamines, sedative
anticonvulsants
Note: Only 30 percent of demented patients on antipsychotics were still
alive at the end of 12 months, compared to 59 percent of those who took a
placebo. Risk increased significantly after mote than a year on the
medications (Ballard, Wolfson Center for Age-Related Diseases at King’s
College, London).
Other Evaluation Considerations
•
•
•
•
•
Changes in sleep or increasing fatigue
Changes in social history
Cognitive Screening (MOCA, MMSE, etc.)
Depression (Geriatric Depression Scale)
Physical exam, labs
Differentiating Delirium from
Dementia in the Acute Setting
Delirium
Dementia
Depression
Rapid onset
Insidious
Can be either
Impaired consc.
Fully conscious
Conscious
Stupor common
Normal arousal
Normal, slower
Agitation
Not easily
agitation
Global memory
deficits
Blunted or easy
agitation
No loss
Recent memory
deficits
Differentiating Delirium from
Dementia in the Acute Setting
Delirium
Dementia
Depression
Sudden onset
confusion
Chronic confusion No confusion
Minimizes
symptoms
Ignores symptoms Exaggerates
symptoms
Visuospatial
deficits
Intact visuospatial
Unaffected
Bedside/Clinical Assessment
• Determine scope of dysphagia evaluation
• Assessment may include bedside, FEES,
and/or VFSS assessment to guide decisionmaking
• What does the patient/family want, need,
and/or can tolerate
Bedside/Clinical Assessment
• Define behavioral/cooperation level/ability to participate
• Determine whether poor attention or distraction is a factor
• Identify easily reversible causes of dysphagia
(e.g. loose fitting dentures, constipation, fatigue)
• Determine food preferences, textures, temperature
• Easier foods/fluids, postures/positions
• Determine whether conservative measures (offering finger
foods, smaller portions, favorite foods, or nutritional
supplements) may improve oral intake
• Need for feeding assistance
Evaluation Considerations
Bedside Exam
– Observe patient self-feeding or being
fed. Time feeding process: how long
does it take for patient to “eat” 30 cc
or 12 half teaspoons of food? (e.g.
pudding; normal time is 2.5 minutes)
63
Feeding Scales/Tools
• Edinburgh Feeding Evaluation in Dementia
(EdFED)
• Eating Behavioral Scale (EBS)
These scales can be used to document change in feeding/eating
over time, part of quarterly NH screenings
Other Clinical/Bedside Evaluation
Considerations (Regnard, Leslie, et. Al., 2010)
• Eating for survival vs. eating for pleasure
• Patient and caregiver distress from eating
(prolonged oral meals, repeated admissions for pneumonia
and fatigue caused by malnutrition)
• Symptoms of malnutrition (taste changes, anorexia,
fatigue, poor wound healing, susceptibility to infections and
gastric stasis)
• Administration of medications
Evaluation Consideration
Bedside Exam
– Determine whether VFSS is necessary
•
•
•
Should be performed only when it will affect
the course of treatment and will not present
any unnecessary risk, burden, or cost to the
patient/family
Yes, if pharyngeal swallow disorder is suspected
and patient is potentially amenable to
management (moderate, not severe patients)
No, if eating or feeding disorder or oral stage
problem is present
66
What is the Purpose of the Instrumental Exam
(Rosenbek, 2013)
• Is this person aspirating?
• Is the individual at risk for aspiration?
• Is the person at risk from aspiration?
Aspiration Considerations
(Rosenbek, 2013)
• Aspiration on VFSS does not mean aspiration during
meals
• No aspiration on VFSS does not mean no aspiration
during meals
• All aspirators do not have health consequences
• Health consequences from aspiration may have
nothing to do with prandial aspiration
• Aspirators will aspirate and making them NPO does
not alter this fact
Nutritional Assessment
and Intervention
Nutritional Status in Dementia
• Resting metabolism rate is low because muscle wasting has
shrunk lean body mass and brains are atrophic
• Metabolic rate above basal is low because patients are
physically inactive
• Patients often have an adapted state whereby they have a
history of weight loss which the body adapts to by reducing its
metabolic rate and retaining dietary protein more efficiently
• Demented patients may be thin and eat less than seems
appropriate but in most cases they are NOT STARVING; they
are in a state of physiologic homeostasis
Longitudinal Findings in LTC Residents with
Dementia (Wang et al., 1997)
Hospitalized demented patients were found to
have:
– a history of weight loss before admission
– Low resting metabolic rate
– Constant body weight over a prolonged period of
observation
They were not progressively starving but lived in condition
of metabolic homeostasis.
Weight Loss and Malnutrition in
Dementia
• Memory impairment can contribute to malnutrition
as AD pts may forget to eat (Morely & Silver, 1988; Claggett, 1989)
• Pts require more calories with development of
restlessness and increased motor activity
• Distractibility and agitation make sitting for
mealtime problematic
• Medication effects – dry mouth, sedation
• Visual agnosia - loss of food or utensil recognition
Weight Loss in Dementia
• Referral for PEG is often prompted by significant
weight loss or fall in serum albumin
• In a prospective study, Nair et al. (2000) found
that only 50% of demented patients with inadequate
oral intake are likely to survive beyond 6 months
• Survival higher in age-matched control group (w/o
PEG) with a higher albumin than in patients with PEG
• This underscores the benefit of more timely
commencement of nutritional intervention
Nutritional Monitoring
• The most simple indicator of change in
nutritional status is obtained through serial
weights
• Blackburn et al., (1977) define weight loss as a
decline of 5% body weight in one month, 7.5%
in 3 months, and 10% in 6 months
Albumin vs. Prealbumin
• Prealbumin is thought to be best predictor of
nutritional status because it is less affected
than albumin by other factor and most
reflective of protein intake (Spiekerman, 1995)
• A serum albumin of less than 5.0 mg per dL
indicate end of life is imminent
Catabolic State
•
•
•
•
Food is not absorbed
Tissues no longer heal well
Infection is difficult to cure
An irreversible downward spiral
The End-of-Life Process
TF in Advanced Dementia: Length of Survival
• Outslander et al. (1993) reviewed 7 studies that
addressed a comparison of elderly patients who
were on oral diets vs. PEG. No clear evidence that
PEG affected length of survival
• In a carefully performed study of NH patients with
advanced dementia and eating disorders, Mitchell et
al. (1998) found that patients fed through a
gastrostomy tube and those who continued to be fed
by hand had the same survival rate
The End-of-Life Process
• Starvation produces a euphoric state that increases
comfort (body uses fat as energy source and ketones
build up; ketomia causes the euphoria)
• Feeding even small amounts can prevent ketonemia
and prolong the sense of hunger
• As protein intake decreases, urine output is diminished
• A by product of the conversion to body fat to energy is
water. This source of energy and fluid, along with
decreased urine output, can combine to meet the
reduced metabolic needs of most patients.
The End-of-Life Process
(Bernat et al., 1993)
• Reduction in thirst and hunger drives results from
a gradual reduction in gastrointestinal peristalsis
and a decrease in intravascular volume; forced
nutrition in the presence of diminished peristalsis
produces nausea and vomiting
• Forced nutrition (NG, IV, enteral feeding) can
create discomfort in addition to direct discomfort
of the tubes themselves
• Thus, attempts to compensate for the normal
reduction of food and fluid intake in dying
patients increases their discomfort
Natural Dehydration
• Secretions in lungs are diminished (reduced cough and
congestion)
• Can lead to a melting away of the swelling and
increased comfort those with edema and ascites
• Less fluid in GI tract which may decrease nausea,
vomiting, bloating, and regurgitation
• Less urine output
• ANH can worsen fluid retention symptoms (peripheral
edema, ascites, pleural effusions) (Hvodo et al., 2005)
Food & Metabolism: Talking with
Loved Ones
• Talk about the natural process in dying:
decreased appetite, decreased thirst
• When body’s metabolism begins to shut
down, it no longer builds the body’s tissues
and organs = anabolic state of nutrition
• When body’s tissues and organs begin to
break down regardless of whether persons is
taking nutrition = catabolic state
Comfort Care
• McCann et al. (1994) performed a prospective
evaluation of 32 mentally aware, competent patients
with terminal illness in a 10-bed comfort care unit
• Outcome Measures: Symptoms of hunger, thirst, and
dry mouth were recorded, and the amounts and
types of food and fluids necessary to relieve these
symptoms were documented. The subjective level of
comfort was assessed longitudinally in all patients
Comfort Care
• 20 (63%) never experienced any hunger
• 11 (34%) has symptoms only initially
• In all patients, symptoms of hunger, thirst, and dry
mouth could be alleviated, usually with small
amounts of food, fluids, and or application of ice
chips and lip lubrication
• Comfort care included use of narcotics for relief of
pain or SOB in 94% of patients
• Conclusion: food and fluid administration beyond the
specific requests of patients may play a minimal role
in providing comfort to terminally ill patients
Dysphagia Goals of Intervention in
Dementia Dysphagia
• Maximizing swallowing function and
optimizing nutrition and hydration
• Assist in the minimization of risks
• Reduce eating fatigue and distress (maximize
patient and family comfort and satisfaction
with eating and drinking)
• Honor and accept patient and family’s quality
of life wishes
Early and Mid-Stage
Intervention
Considerations
Thickened liquids are the most frequent
strategy for managing aspiration risk
(Garcia et al., 2005)
Modified Foods and Fluids
• Excessive food and fluid modification may decrease
QoL and impact nutritional status by negatively
affecting appetite and oral intake
• Protocol 201 demonstrated that “thicker is not
always better” (Robbins et al., 2008)
• UTIs and dehydration were more common with
thickened liquids
• Mean LOS due to pneumonia was 3x longer for
patients drinking honey thick liquids compared to
those randomized to nectar thick liquid or chin tuck
Medicare Recommends Regular Diets for NH
Residents (ASHA Leader, April 2013)
• Research shows “little benefit” from therapeutic diets, tube
feedings, and altered consistency diets
• “Unless a medical condition warrants a restricted diet,
consider beginning with a regular diet and monitoring how
the person does eating it.”
• “Interdisciplinary team members should, including heath care
practitioners, should be involved in balancing the risks of
aspiration against the potential benefit of more liberal diets
and food consistency, and deciding whether there are viable
alternatives
(Standards developed by interdisciplinary task force sponsored by Pioneer Network
and Rothschild Foundation)
Preserving Feeding Independence
• Position properly
• Investigate whether patient can safely use any finger
foods
• Place small amounts of foods on lips and encourage
licking it off
• Decrease all distractions
• Create a pleasant atmosphere that increases
appetite
• Try backward chaining feeding technique
Compensatory Management
Strategies
• Postural techniques
• Think three T’s (taste, temperature, texture) to
maximize sensory input and facilitate a faster
oral onset or faster triggering of the
pharyngeal swallow
• Introduce foods that are highly seasoned,
spicy, and sweet
• Carbonated beverages
Eating Intervention Strategies
(Vitale, Monteleoni et al., 2009) Strategies
Backward Chaining
• Place the spoonful of food in patients’ hand
and help them guide it to their own mouth
• Provides cortical/subcortical
awareness/stimulation of the need to swallow
• Assistance is gradually withdrawn as patient
learns to regain the ability to feed themself
Spaced Retrieval (SR) Technique
• Spaced retrieval is an intervention strategy that uses
expanded rehearsal
• Patient practices successfully recalling information
over progressively longer periods of time
• Clinical procedure (Brush & Camp, 1998):
– Patient is first told target information then immediately
asked to recall it
– In subsequent trials, the patient is asked to recall the
information after time intervals that are doubled as training
progresses
– The time intervals between recall attempts are interspersed
with conversation or therapy activities
– If patient makes an error, the clinician provides the correct
information, asks for immediate recall, then goes back to the
last time interval at which the patient was correct
Spaced Retrieval
• SR therapy sequence to teach use of liquid chaser
(Brush & Camp, 1998) to an 86 year old with mild dementia
(19/30 MMSE). All training occurred at mealtimes:
– Session 1 & 2: Cue card presented at beginning of meal,
“What do you do after your swallow your food.” The pt
responded correctly and was then instructed to take a sip
of liquid. The SLP asked pt to recall card information and
carry out behavior at 1, 2, 4, 8, and 16 minutes w/o errors.
The cue card was faded. The training fit naturally into the
eating pauses during the meal.
Spaced Retrieval
• SR sessions 3-13 (Brush & Camp, 1998):
The pt remembered the sequence and would only
be asked, “What should you do after swallowing
food?” when he made an error and put the next
bite into his mouth w/o first taking a sip of liquid.
The pt was able to implement the swallowing
technique with 95% success and one verbal
reminder during each meal.
Techniques to Optimize Hydration and
Nutrition (adapted from Easterling and Robbins, 2008)
• Good oral hygiene (Chalmers & Pearson, 2005)
• Consistent environment and seat in the dining
room
• Encourage 6 small meals and hydration breaks
per day rather than 3 meals per day (Silver Spoons –
Musson et al., 1990)
• Include foods that are spicy, sweet, and sour
to maximize sensory input
Techniques to Optimize Hydration and
Nutrition (adapted from Easterling and Robbins, 2008)
• Consult with a RD about appropriate high
calorie snacks
• Encourage self-feeding
• Don’t allow staff to be called away during
meals or when assisting pts with meals/snacks
• Eliminate nonfood items from tables or trays
Techniques to Optimize Hydration and
Nutrition (adapted from Easterling and Robbins, 2008)
•
•
•
•
Make foods visually appealing
Allow pts to touch food – FINGER FOODS
Focus on patient preferences
Do not make patients wait when they arrive
for meals
Techniques to Optimize Hydration and
Nutrition
• Timed Snack Protocol (Boczko, 2005)
– Designed to decrease incidence of malnutrition and
dehydration in skilled nursing facilities
– 4 week study in which residents were weighed weekly and
snacks given and consumed were recorded
– Snacks offered every two hours after meals
– Successful in improving hydration and nutrition and med
compliance
– Snacks included highly spiced or sweetened finger foods
based on pt preference
Techniques to Optimize Hydration and
Nutrition
• Memorial Meal Mates Program (Robinson and
Colleagues, 2002)
• College-aged volunteers provided 3-hour
training by interdisciplinary team
• Intake nearly DOUBLED: Mean intake of pts
fed by Meal Mates was 59% vs. 32% for pts
fed by nursing
Food for Thought: We have delegated
one of the most important and challenging
care activities to the least educated, lowest
paid worker, and underappreciated in the
nursing home.
Caregiver Training
• NH staff have enormous responsibility providing
feeding assistance
• Volunteer training program (Lipner, Bosler and Giles,
1990)
– Volunteers must complete a training program (90-minute
lecture and practical experience)
– Competency based
– Some form of volunteer recognition to identify trained
volunteers
– Quarterly or annual recognition program of volunteer
service
Caregiver Training
• Silver Spoons (Musson et al., 1997)
• Daily “Happy Hour” which encourages
socialization and hydration
• “Second Seating” – lunch provided for pts
that require modifications of eating style,
food/fluids, timing
Other Intervention Considerations
• There are other factors that are likely more
important and that need to be considered
• We must consider other medical variables and…
Predictors of PNA in Nursing Home Residents
(Langmore, 2002)
•
•
•
•
•
•
•
•
Requires suctioning
COPD
CHF
Feeding tube
Bedfast
High care mix index
Delirium
Weight loss
• Dysphagia (# 9)
• UTI
• Mechanically altered
diet
• Dependence for eating
• Bed mobility
• Locomotion
• Number of meds
• Age (# 16)
Intervention in the Later Stages of
Dementia
Tube Feeding
• Use of ANH in patients with advanced
dementia has been deemed to lack
benefit and carry substantial treatment
burdens
• Use of ANH remains prevalent
FT in Advanced Dementia
(Finucane et al., JAMA 1999)
• Does not improve nutritional status
• Does not prevent aspiration
• Does not reduce occurrence of
pneumonia
• Does not increase life expectancy
• Increase in urinary and GI output
resulting in increase in pressure sores
and need for restraints
Enteral tube feeding in older people with advanced
dementia: Findings from a Cochrane systematic review
(Candy et al., 2009)
• Full literature review completed in April 2008
• No RCTs were identified
• 7 observational studies: 6 assessed mortality (no evidence of
increased survival with enteral feeding); other study assesses
nutritional outcome
• 0 studies examined effect on QOL and no evidence of benefit
in terms of nutritional status or prevalence of pressure ulcers
• Conclusions: Insufficient evidence to suggest that enteral TF
is beneficial in people with advanced dementia. Data is
lacking on the adverse effects of this intervention
Prevalence of Tube Feeding
(Mitchell et al.,2003)
• Cross-sectional Medicare database of 200,000
NH residents with advanced dementia
• Approximately one-third had FTs
• Pt characteristics consistently associated with
a higher likelihood of being fed included
younger age, male, nonwhite race, divorced,
lack of advance directives, recent decline in
functional status, no diagnosis of AD
Prevalence of Tube Feeding
(Teno et al.,2002)
• 1999 National Repository of Minimum Data
Set of over 385,000 NH residents with
advanced dementia
• 18.1% had FT
• Rate varied form 3.8% in Nebraska to 44.8% in
D.C.
• Pts with DNR order had a markedly reduced
utilization of FTs
Feeding Tubes in Advanced Dementia
• Considerable variability in use of FTs in longterm care
• 34% of NH residents with advanced dementia
have FTs
• Two-thirds of these tubes are placed during an
acute stay (Mitchell et al, 2003; Teno et al, 2010)
Influences Impacting Feeding Approaches in Advanced
Dementia (Lopez et al, 2010)
• Study of 2 NHs in South Carolina
– 1 with FT rate of 41.8%, other with rate of 10.7%
in patients with advanced dementia
– Data collection included: physical environment,
mealtime and decision-making processes, direct
observation and interview of key personnel,
availability of educational materials, etc.
Influences Impacting Feeding Approaches in
Advanced Dementia
(Lopez et al, 2010)
• Results:
-NH with low rate had homelike environment centered on
eating as key component of life, mealtimes staffed with
trained NAs who valued hand feeding, and advanced care
planning included family and palliative care options
-Other NH had striking variations
Conclusions: NH culture influences the approach to feeding.
NHs with low rate include a physical environment that promotes
enjoyment of food, administrative staff, and empowerment of
staff to value hand feeding and shared decision-making involving
family members.
TF is not Innocuous
• TF has not been shown to prevent aspiration, heal
pressure wounds, improve nutritional status or
decrease mortality in AD
• Burdens of FTs in AD include: recurrent and new
aspiration, tube-associated and aspiration-related
infection, increased oral secretions, discomfort, tube
malfunction, use of physical and chemical restraints;
need for hospital readmission to manage tube related
complications
Feeding Tubes in Dementia
• The current evidence does not support use of FTs in this
population
• Why is the use of FTs so high in this population”?
- The greater majority of NH residents do not have
orders documenting their wishes about the use of artificial
nutrition or hydration
– NHs are fearful about regulatory scrutiny of weight loss
– If SLP states the individual is not safe to eat, this is
interpreted as “do not feed”; hence, a FT is often placed
Misconceptions About FT in Advanced
Dementia in Physicians
• Shega and colleagues (2003) conducted survey
measuring physician knowledge and beliefs
– 76% believed FT would reduce the risk of
aspiration
– 75% believed it would accelerate healing of a
decubitus ulcer
– 61% believed it would prolong survival
– 27% believed it would improve functional status
SLPs Perceptions About PEG in Advanced Dementia
(Sharp & Shega, 2009)
• Sharp and Shega conducted a survey of 1,050 medical SLPs to
describe beliefs and practices about use of PEG in patients
with AD
– 56% of SLPs recommend PEG (many believe that PEG
improves nutritional status and increases survival
– Nearly 40% believed that PEG was standard of care while
15% believed it should be
– Only 11% of SLPs would want a PEG themselves
– Conclusions: Discrepancy between SLPs beliefs,
literature, and self-reported practice.
Other Considerations in TF
Placement: Symptom Management
• Eating for survival or eating for pleasure
• Reducing patient distress of prolonged oral meals,
repeated admissions for PNA, fatigue due to
malnutrition
• Reducing hospital admissions – antibiotics for
infections can be administered via G-tube
• Continued administration of medications
• Distressing mealtimes
• Patient/family wishes
Management of Distressing
Symptoms
(Roe et al., 2007)
•
•
•
•
•
•
•
Central to successful patient care
Coughing/choking
Increased dyspnea/SOB
Thick saliva
Excess saliva
Gagging
Difficulty chewing
The OTHER Option in the Later Stages
Hand Feeding
• Labor intensive
• 45-90 minutes per minutes per day are needed to hand feed and
deliver medications to patients with advanced dementia (KayserJones et al., 1999)
• Hu et al. (1986) found staff took an average of 14 minutes per day
to assist patients with mild to moderate dementia while family
members took 28 minutes
• Burns, Jacoby, and Luthert (1990) found that AD patients in a
residential facility required TWICE as much time to complete meals
as non demented pts with physical impairments
• Potential fiscal incentive to tube feed pts with advanced dementia
by NHs. Tube fed pts generate a higher daily reimbursement rate
from Medicaid yet require less expensive nursing home care
(Mitchell et al., 2003)
Hand Feeding
• Allows patients to maintain pleasure of tasting food
as long as it remains comfortable for them
• Provides an opportunity for family members to care
for their loved ones and for formal caregivers to
interact with their patients
Supportive Nutrition: Comfort and
Choice
• Small portions: offer small amounts more frequently
• Include nutritious high calorie snacks
• Use fats and sweets: butter, cream cheese, sour cream,
honey, jams, jellies
• Consider supplements: Carnation Instant Breakfast,
homemade milkshakes, add powdered milk in cooking
• Limit beverages with meals
• Allow adequate times for meals
• In patients with dysphagia: smooth and moist foods,
encourage liberal use of fats to lubricate, bolus formation,
and calories, encourage ice chips, Italian ice, popsicles for
hydration
Oral Feeding Options for People with Dementia: A
Systematic Review
(Hanson et al., 2011)
-Reviewed the benefits of oral feeding options in
people with dementia review
-Systematic review from 1/90-10/09
-13 controlled trials on use of supplements
-12 controlled trials on assisted feeding or other
interventions
Conclusions: High caloric supplements and other
feeding options can help people with dementia with
feeding problems to gain weight. “These treatments
can be offered alone or in combination as an
alternative to tube feeding.”
Oral Feeding Options for People with Dementia: A
Systematic Review
(Hanson et al., 2011)
• Three studies testing appetite stimulants demonstrated lowstrength evidence of benefit
• One study found that dronabinol improved weight and
improved disruptive behaviors (Volicer, Stelly, & Morris, 1997)
• Randomized study of megestrol acetate or placebo provided
to NH residents demonstrated 43% of the intervention vs.
18% of the placebo group gained more than 1.82 kg over 12
weeks but those with advanced dementia were less likely to
respond (Yeh, Wu, & Lee, 2000)
Other Nonmedical Interventions
• Chocolate and exercise (Beck, Damkjaer & Beyer,
2008)
• Enhanced dietitian time ( Keller et al., 2003)
• Assisted feeding 2x per day during or between
meals (Simmons et al., 2009)
TF vs. Hand Feeding
• Not an either or proposition
• Range of options and choices rather than one
decision
• Eating and drinking with assistance
• Eating or drinking favorites or certain meals
• Withholding or withdrawing nutrition and hydration
• TF
• Time-limited trial
• Primary TF supplemented by quality of life eating
What are the Next Steps?
• Identify the goals of care. The goals of care
guide everything!!!
• Help guide decision-making
• Help transition patient and family toward a
palliative, comfort, or compassionate
approach to care
Guiding Decision-Making
• Primary Care Practitioner (PCP)
recommendations about feeding tube
placement in patients with advanced dementia
are influenced by the SLP (Shega et al., 2003)
• Thus, we as SLPs have a powerful influence and
have a tremendous responsibility in guiding
decision-making
Strategies for Preventing Tube
Feeding: Long Term Care
• Conducive to development of relationship with patient and
family
• Sit down, LISTEN, provide comfort and support to family
• Decision making for feeding problems is among the most
difficult decision in dementia
• Thus, SLPs should be prepared to provide effective and
compassionate decision support
• Advance care planning is critical in feeding decisions
• Lack of advance directives is a consistent risk factor associated
with FT insertion in dementia (Mitchell et al., 2003; Gessert et al.,
2000)
Staff Education
• Many doctors are unfamiliar with literature
• Many doctors face barriers: attitudinal,
institutional, imposed by healthcare)
• Work to change doctors’ knowledge skills, and
practice
Strategies for Preventing Tube
Feeding: Long Term Care
• Discussion about feeding decisions should follow an
ethical framework (Mitchell, 2007):
1. clarify the clinical situation
2. establish the primary goals of care
3. present treatment options and their risks and
burdens
4. weigh the options against values and preferences
5. provide additional and ongoing decision support
Explore Fully Patient’s/Family’s Goals
of Care
• Do they understand what to expect with natural
history of the disease and impact on swallowing,
eating, nutrition?
• “Does eating bring you pleasure/enjoyment.”
• When you think about your medical care, how do you
think about balancing quality of life with length of
life?”
• “Would you ever consider a feeding tube.”
Decision-Making
• Patients and families need time to process
information
• Decision-making is a process that evolves over
time
• Clinicians must make themselves available
• Frequent follow-up is critical
Assisting the Family (and Team) with
Decision-Making
• What will be beneficial for your loved one?
• What are the benefits of ALL options: careful
hand feeding, modified diet, TF, etc.
• What are the risks of ALL options: careful hand
feeding, modified diet, TF, etc.
Video Resource for Families:
http://www.med.unc.edu/pcare/resources/feedingoptions
Decision-Making In Advanced Dementia
(Teno et al., 2011)
• Of approximately 500 family members surveyed
– Almost 11% of descendents with dementia had a FT
– Risks associated with FT were not discussed in 1/3 of the
cases
– More than half of the respondents felt healthcare provider
was strongly in favor of FT placement
– The possibility of hand feeding was NOT discussed in
nearly 1/3 of the cases
Decision-Making Process and Support
(Mitchell & Lawson, 1999)
• Examined process by which family member or
surrogate made decision for long-term FT
placement
• Telephone survey to 46 substitute decision
makers of TF patients over 65 years
• Physician education was limited to 15 minutes
or less in 37% or absent 28.3% of the time
Decision-Making Process and Support
(Mitchell & Lawson, 1999)
• 84.8% felt they understood the benefits
• Less than half felt they understood the risks
• Just over half felt they received adequate
support from the health care team in making
the decision
Improving Decision-Making for Feeding Option in Advanced
Dementia: A Randomized, Controlled Trial
(Hanson et al., 2011)
• Objectives: To test whether a decision-aid improves
quality of decision-making about feeding options in
advanced dementia
• 24 Nursing Homes in NC
• Methods: Surrogates received an audio or print
decision-aid on feeding options in AD. Controls
received usual care.
• 256 residents and surrogate decision-makers
Improving Decision-Making for Feeding Option in Advanced
Dementia: A Randomized, Controlled Trial
(Hanson et al., 2011)
• Findings:
– After 3 months, intervention surrogates had lower
Decisional Conflict Scale scores than controls and more
often discussed feeding options with health care provider
– Residents in the intervention group were more likely to
receive a dysphagia diet and showed a trend toward staff
eating assistance
– Tube feeding was rare in both groups, even after 9 months
Conclusions: A decision-aid reduced decisional conflict for
surrogates and increased their knowledge about feeding
options with providers
Family Perspective
• Decision about feeding/eating/nutrition is one of the
most stressful events in a family’s life
• Fatigued and overwhelmed
• Fear, guilt, and anger are common
• Usually faced with making decisions because loved
one has lost capacity
• Sometimes arguing/unable to reach consensus
Family Perspective & Conference
Issues
• Identify family
members/relationships
• Include patient if he/she
has some capacity
• Share the hard news
• Simple language
• Explain why patient is
unlikely to improve
• Discuss options of care
• Provide cautious optimism
What Else?
• In some cultures the entire family wants to be
involved
• Suggest family choose 1 person to be
spokesperson and contact person
• If this is not feasible, family may hire a
mediator…
– Ulterior motives?
Help Family (and Team) Select Reasonable
Goals of Care
• Spend more time with family; need time to process information;
decision making is a process that evolves over time; frequent
follow-up
• Provide them with informational materials:
Decisional support tool: Making Choices: Long-term Feeding Tube Placement
in Elderly Patients: A Book and Guide for Substitute Decision-Makers
(Mitchell & Lawson, 1999)
• Demonstrate and empower them to participate with:
– Careful hand feeding
– Focus on pleasure feeds
– Don’t force feed
– Oral care techniques
Handling Hard Conversations (adapted
from Stone-Goldman, 2013)
• Breath and observe your body language uncross your arms, calm presence
• Listen with respect and patience - try to
appreciate what the individual is going
through
• Remember that when people are distressed,
information is of less use than quiet support avoid persuading, convincing or arguing
• Don’t impose your own agenda
Paradigm Shift in Goals of Care
• Traditional Goals
– Rehabilitative
– Compensation
– Combination
• Goals of Care in
Dementia
– Compensate/preserve
– Comfort/Compassionate
(palliative) – focus on
maximizing QoL
Compensate, Comfort,
CHOICE
Palliative Care ≠ Hospice
Palliative
Hospice
• Provides patients &
caretakers w/relief from
symptoms, pain, and
stress of a serious
illness
• Provided by a team
• “Extra layer of support”
• Useful for any stage of
disease
• provides patients &
caretakers w/relief from
symptoms, pain, &
stress of a serious
illness
• Provided by a team
• Limited to end of life
care
Why a Palliative Care Approach?
• WHO, 2013
• IMPROVE PATIENT OUTCOMES
• Prevention and relief of emotional, spiritual,
and physical suffering
• EARLY IDENTIFICATION through careful
assessment and treatment of problems
• Strive to increase participation in activities the
patient finds rewarding: eating, drinking in
social and religious activities
Palliative Care
(WHO, 1990)
• Provides relief from pain and other distressing
symptoms
• Affirms life and regards dying as a normal
process
• Offers a support system to help patients live
as actively as possible until death
• Uses a team approach to address needs of
patients and their families
• Is applicable early in the course of illness…
Communicating Goals of Care and
Options and Choice – NOT
Recommendations
Offer Options/Choices (Palecek et al., 2010)
• Orders should stress the patient’s goals of care
• Order for comfort or supportive feeding
• This order should state what steps are to be taken to ensure
patient’s comfort through an individualized feeding care plan
• Comfort feeding through careful hand feeding
• “This …offers a clear goal-oriented alternative to tube
feeding and eliminates the apparent care-no care dichotomy
imposed by current orders to forgo artificial hydration and
nutrition.”
“In light of the patient’s guarded prognosis and
poor likelihood of swallowing recovery, he/she
appears to profile as one that would benefit from a
non-invasive, compassionate approach with focus
on comfort feeds.”
Individualized Plan of Care
• In light of the patient’s guarded prognosis and poor likelihood
of swallowing recovery, he/she appears to profile as one that
would benefit from a non-invasive, compassionate approach
with focus on comfort feeds. This is is concert with
patient/surrogate’s documented/expressed desire for DNI.
• This can be accomplished by…
– …
– …
– …
Other Documentation/Communication
Considerations
• Include patient choice in plan of
care
• Avoid the descriptors “difficult” or “noncompliant”
• Negative descriptors do not acknowledge patient’s choices
Communicating Care Plans
(adapted from Krival, 2013)
• Diet: regular consistency, thin liquids, with thickened liquids
as needed for comfort/ease.
• Pt requires total assistance with meals and medications. He
needs to rest to breathe between bites and sips.
• If pt is distressed on thin liquids (signs: coughing, frowning,
grimacing, panting):
– Take longer rest breaks so he can catch breath
– Small sips (either close off the straw, or use a cup to control the
amount).
– Offer thickened liquids. This should be the last thing you try.
Communicating Care Plans
(adapted from Krival, 2013)
• Pt will have good days and bad days. Sometimes he/she is
more alert and able to breathe easier. If you feel you have
done everything to help him/her (softer foods, thickened
liquids, etc.) but that it is not comfortable for pt to eat, let the
nurse know. You and the nurse can decide to hold the tray
until he/she is more awake and alert.
• We understand that pt may aspirate at times, and that none
of us may be able to prevent it. The goal is for him/her to be
comfortable eating and drinking, and for him/her to eat and
drink as much or as little as he/she wishes.
Challenges of Decision-Making
Best
available
evidence
Patient
wishes
Clinician’s
knowledge &
experience
Support in Dementia-Dysphagia
Ethical Decision-Making
• ASHA Code of Ethics
• ASHA Roles of SLP in Swallowing and Feeding
Disorders (2002)
• Knowledge and Skills Needed by SLPs
Providing Services to Individuals with
Swallowing or Feeding Disorders (2002)
Other Support and Considerations
• Have you discussed your concerns with other
care providers? Provided education?
• Have you documented with supporting data?
• Ethics Committee or Medical Review Board?
Resources for the Clinician
• Oral Feeding Difficulties and Dilemmas: A Guide to
Practical Care, Particularly Towards End of Life (Royal
College of Physicians and British Society of
Gastroenterologists, 2010)
• Decisional support tool: Making Choices: Long-term
Feeding Tube Placement in Elderly Patients: A Book and
Guide for Substitute Decision-Makers (Mitchell &
Lawson, 1999) http://decisionaid.ohri.ca/decaide.html
• Facing eating difficulties in end-stage dementia (Gillick &
Mitchell, 2002)
American Geriatrics Society (AGS)
2013 (May) Feeding Tubes in
Advanced Dementia Position
Statement
AGS Positions (2013)
1. Percutaneous FTs are not recommended for older
adults with advanced dementia (AD).
2. Efforts to enhance oral feeding by altering
environment and creating patient-centered
approaches to feeding should be part of usual care
for older adults with AD.
3. TFing is a medical therapy that can be declined or
accepted by a patient’s surrogate decision maker in
accordance with advanced directives, previously
stated wishes, or what it is thought the patient
would want.
AGS Positions (2013)
4. It is the responsibility of all team members for
residents in LTC settings to understand any previously
expressed wishes of the patient regarding TF’ing and
incorporate these wishes into the care plan.
5. Institutions should promote choice, endorse shared
and informed decision-making, and honor patient
preferences regarding TFing. They should not impose
obligations or exert pressure on patients or providers to
institute TFing.
Make Sure You Haven’t Overlooked These
Opportunities
•
•
•
•
Maximizing care plan for patient quality of life
Attending to family needs
Attending to your needs
Avoiding being judgmental
Other Comfort
• Knowing that comfort (palliative) care focuses
on life. Comfort care (palliative) patients live
longer and better
• Recognizing that you did no harm and assisted
the patient and family in adding life to their
remaining time
Bow Out vs. Transition Out
• Once agreed upon, if no role for active SLP
involvement:
– Offer means of continued support for the patient
and/or family
– Provide easy contact info
Case Presentation 1
• Consult from PCP: “Elderly man has difficulty swallowing
some foods, especially meats, despite modifications such as
grinding. Your assessment and recommendations will be
appreciated.”
• 92 year old man with history of dementia residing with family
• Family manages medication. Pt walks alone at home;
otherwise uses a cane or walker.
• Dysphagia complaints: Per daughter, 6 month history of c/o
food sticking, coughing with liquids for at least 6 months.
• Only mild gradual weight loss; no recent chest colds or PNA
Case Presentation 2
• 84 year old man presented to ED with
diagnosis of advanced dementia admitted
with UTI
• Declining ability to perform ADL’s,
FTT/refusing food and feeding, dehydrated
• Lived alone, no known family or advanced
directive
Case Presentation 3
• 84 year old patient with Parkinson’s admitted for altered MS and poor oral
intake on 2/12/13
– limb jerking, hallucinations; family report of declining functioning at
home
– Multiple ED visits during prior month with comparable presentation
– Well known to Speech service for a 3 year period for both LSVT and
periodic dysphagia evaluation and intervention
– AD on file stating DNR/DNI
• Most recent VFSS 1 month ago demonstrated:
– moderate oropharyngeal dysphagia with silent, thin liquid aspiration
– aspiration managed with 10cc Provale cup or nectar thick liquids
– patient clearly expressed wishes regarding QoL and against Provale
cup and thickened liquids
Case Presentation 3
• No clearly identifiable reason for delirium and
poor oral intake
• Wife, daughter, and care giver present at time
of bedside assessment
• Clinical Swallowing Observations:
psychosis/delirium; unsafe for any oral intake;
family ADAMANT about desire for comfort
care
Conclusions
• Successful management of the patient with
dementia is complicated
• SLP must assume an early and active role
throughout the course of disease
• Must carefully assess and consider patients
rights, wishes, and QUALITY OF LIFE
• Goals should stress the patient’s goals of care
• Caregiver cooperation and diligence is critical
• SLP must assume a leadership role
My (Our) Goal
To work towards the creation of
system that I (we) would want
caring for my (our) loved ones
and me.