Clinical Excellence in Dementia Dysphagia Management Best Practices in Cognitive Based Swallowing Disorders

1. 10/18/2011 Clinical Excellence in Dementia – Dysphagia Management Best Practices in Cognitive Based Swallowing Disorders

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3. 3 The Normal Aging Swallow What has been described as swallowing dysfunction in young persons may not be abnormal in very elderly persons. It is difficult to distinguish the effect of normal aging from the effects of specific diseases or gradual degenerative changes. Preliminary observations on the effects of age on oropharyngeal deglutition, Julie F. Tracy, Jeri A. Logemann, Peter J. Kahrilas, Pothen Jacob, Mindy Kobara and Christine Krugler, Dysphagia, Volume 4, Number 2 / June, 1989 Five measures were significantly changed with increasing age: 1. Duration of pharyngeal swallow delay (increased) 2. Duration of pharyngeal swallow response (decreased) 3. Duration of cricopharyngeal opening (decreased) 4. Peristaltic amplitude (decreased) 5. Peristaltic velocity (decreased) What is normalWhat is normal

4. 4 Dysphagia and Dementia Combination The ripple effect Dysphagia – the pebble or rock in the pond Nutrition Hydration Quality of Life Resuming calm waters Achieving a Balance of Safety and Quality of Life SLP RoleSLP Role

5. 5 The Dysphagia & Dementia Combination The complexity of the relationship Dementia and significant change Anticipated improvement as an acute process resolves Treatment appropriateness conflict Individualized approaches identified via the skilled dysphagia clinician Nursing, Activities, Family training All / general areas of challenge When is skilled treatment appropriate Basic versus individualized approachesAll / general areas of challenge When is skilled treatment appropriate Basic versus individualized approaches

6. 6 Dementia Related Behaviors A call for one of three….. Comfort Movement Communication Hunger, thirst, position, basic needsHunger, thirst, position, basic needs

7. 7 Early Stage Dementia Effects of Dementia on nutrition and hydration Mild Cognitive Impairment Depression Awareness of cognitive deficits Decreased nutrition and hydration

8. 8 Middle Stage Dementia Effects of dementia on nutrition and hydration Wandering Motor restlessness Assistance needed for adequate oral care Cognitive based dysphagia Decreased nutrition and hydration

9. 9 Advanced / Late / End Stage Dementia Effects of dementia on nutrition and hydration Self-feeding ability is lost Individuals become dependent on others for meal consumption Cognitive based dysphagia Dependence on oral care Oral apraxia Oral acceptance deficits Oral preparatory deficits Positioning Three common head/neck positions occur in the later stages of dementia: chronic head/neck flexion, variable head/neck flexion/extension caused by a lack of positioning management, and chronic head/neck hyperextension Crescent Pillow Mate - cervical alignment w/o forward flexion

10. 10 Differential Diagnosis Cognitive based dysphagia Etiology lies in neurological disease process Behavioral refusal of PO intake In the presence of intact oral motor and oral phase function Determine favorite solids and liquids Ask patient to take favorite items

11. 11 Cognitive Challenges Dementia – Behaviors - Medications Alertness – Pre-requisite skills Awareness Attention Distracted periodically throughout the meal

12. 12 Management of Cognitive Challenges Impacting Swallowing Alertness Consider the etiology of reduced alertness Give extra helpings when alert Nutritional supplements Flexibility within the feeding routine Defining satisfactory alertness criteria for safe meal consumption: Are eyes open – not 100% necessarily if other criteria are met Are questions being answered contingently? Does patient follows one-step commands?

13. 13 Challenging Mealtime Environmental Factors Media Music that evokes a positive or negative reaction TV Lighting – the more natural the better Environmental organization – level of clutter Color contrast Other Patients, Staff Meal tray set up Pre-meal wait time

14. 14 Sensory Function Are sensory pathways intact, intermittently intact, or absent? Assessment of the six anatomic sites in this order: - tongue (anterior two-thirds); - tongue (posterior one-third); - hard palate; - soft palate; - posterior pharyngeal wall; and -laryngeal region Manifested in: decreased PO intake secondary to - altered/absent perception of taste; diminished safety mechanism for sensing hot food, with potential/actual intraoral injuries; and/or profound sensory deficits in the later stages of the disease that eliminate any functional mastication pattern Managing Dysphagia in Residents with Dementia, Sue Curfman, MA, CCC Assessment – Bedside examAssessment – Bedside exam

15. 15 Oral Motor Changes in Dementia The oral motor function will determine the pattern of mastication, which deteriorates in a predictable fashion with the progression of dementia. The progressive deterioration in the mastication patterns below reflects a transition from higher level reflex integration to lower level reflex integration during the course of dementia: (1) rotary chew pattern; (2) lateral chew/chomping pattern and jaw-jerk reflex; (3) suck-swallow pattern and (4) absent oral motor function for chewing. Managing Dysphagia in Residents with Dementia SKILLED INTERVENTION FOR A COMMON—AND TROUBLING—DISORDER BY SUE CURFMAN, MA, CCC

16. 16 Oral Apraxia Patient is unable to volitionally open their mouth to a spoon and/or cup Once bolus is in the mouth, the Patient may be unable to manipulate it or initiate a swallow This may be seen with solids and/or liquids

17. 17 Oral Acceptance Partial to complete lip closure Differentiate between patient refusal and oral apraxia

18. 18 Oral Preparatory Partial to complete oral stasis Bolus may come to a complete stop in the mouth

19. 19 Thermal Gustatory Methods Addressing oral acceptance, oral preparatory & oral stage dysphagia: Thermal - Gustatory Stimulation Methods Why does lemon Italian ice work...? Neuroreceptors and motor response Cyclic Ingestion Technique Alternate extreme tastes versus bland tastes

20. 20 Interpretation of Cognitive and Behavioral Characteristics Wandering as a variable interferring with meals Auditory comprehension deficits Many need visual cues to comprehend mealtime setting Biting the spoon – a primitive reflex that emerges – may be misinterpreted as refusal to eat Turning the head away – A protective mechanism to indicate more time is needed

21. 21 Dysphagia, Weight Loss, and Cognition Consider primary reason for inability to sustain nutrition & hydration Weight loss as a result of dysphagia and impaired cognition SLPs treat the dysphagia and / or the cognitive deficits that may lead to reduced nutrition and hydration and then weight loss SLP focused goals for swallowing and cognition

22. 22 Predictors of aspiration pneumonia: how important is dysphagia? Predictors of aspiration pneumonia: how important is dysphagia? - Langmore SE - Dysphagia - 01-APR-1998; 13(2): 69-81 Research Risk Factors for Aspiration Pneumonia Dependence for feeding Dependence for oral care Number of decayed teeth Tube feeding More than one medical diagnosis Number of medications Smoking

23. 23 Predictors of aspiration pneumonia: how important is dysphagia? Predictors of aspiration pneumonia: how important is dysphagia? - Langmore SE - Dysphagia - 01-APR-1998; 13(2): 69-81 The role that each of the significant predictors might play was described in relation to the pathogenesis of aspiration pneumonia. Dysphagia was concluded to be an important risk for aspiration pneumonia, but generally not sufficient to cause pneumonia unless other risk factors are present as well. A dependency upon others for feeding emerged as the dominant risk factor, with an odds ratio of 19.98 in a logistic regression model that excluded tube-fed patients.

24. 24 Safe PO Candidacy NPO PO

25. 25 Cognitive Based Dysphagia Treatment Treatment Techniques: The coated spoon Cold, metal spoon presentation Adaptive equipment Patient routine adaptations - timing of meals capitalize on patient routine at PLOF Alternate hot - cold Diet texture modification

26. 26 Cognitive Based Dysphagia Treatment Treatment Techniques: Timing, readiness, latency techniques Use of distraction Tactile, visual, verbal cues & modeling Behavioral strategies Finger foods When it is difficult to use a utensil When it is helpful to ambulate and eat When in doubt - COMBINE!

27. 27 Additional Treatment Strategies Participation in mealtime set up Self feeding Limiting the items of meal presentation Establish mealtime routine 6 small meals per day / snacks between meals Frequent breaks Walk and eat Demonstrates an inability to understand what is expected of him/her at mealtime Establish the same routine at each meal. Reinforce with simple one-step directions using visual and gestural cueing. Placement of the fork/spoon in the resident’s preferred hand and hand-over-hand caregiver assistance may trigger the eating process. LIMITED ATTENTION SPAN Has an inability to attend to the task of eating, limiting the meal from being consumed entirely Use simple words. Touch and redirect the resident to the task of eating. Five or six meals per day may be needed for residents who are unable to eat much at any one time if they become agitated when caregivers attempt to refocus them. Leaves the table during the meal The meal may be a combination of sitting and eating, followed by walking and eating finger foods from a bowl. Make sandwiches with anything that will hold together. Waist pouches may help a pacer to keep his/her hands free so he/she can hold finger foods. Eats nonedibles Avoid garnishes that are not easily chewed or eaten or that are decorative in nature. Pours liquids onto foods If residents pour liquids over food, it may be necessary to provide them only when food is not present. Takes another resident’s food Offer visual cueing for boundaries by using place mats to reduce interest in another’s meal. Square tables provide better definition of territory than round tables. Demonstrates an inability to understand what is expected of him/her at mealtime Establish the same routine at each meal. Reinforce with simple one-step directions using visual and gestural cueing. Placement of the fork/spoon in the resident’s preferred hand and hand-over-hand caregiver assistance may trigger the eating process. LIMITED ATTENTION SPAN Has an inability to attend to the task of eating, limiting the meal from being consumed entirely Use simple words. Touch and redirect the resident to the task of eating. Five or six meals per day may be needed for residents who are unable to eat much at any one time if they become agitated when caregivers attempt to refocus them. Leaves the table during the meal The meal may be a combination of sitting and eating, followed by walking and eating finger foods from a bowl. Make sandwiches with anything that will hold together. Waist pouches may help a pacer to keep his/her hands free so he/she can hold finger foods. Eats nonedibles Avoid garnishes that are not easily chewed or eaten or that are decorative in nature. Pours liquids onto foods If residents pour liquids over food, it may be necessary to provide them only when food is not present. Takes another resident’s food Offer visual cueing for boundaries by using place mats to reduce interest in another’s meal. Square tables provide better definition of territory than round tables.

28. 28 Additional Treatment Strategies Differentiating the place setting and square tables Likes and dislikes Multisensory cueing Double portions Alternate temperature Capitalize on sweet taste receptors Anxiety Name place cards, receipts for ‘payment’ of meals PERCEPTUAL DYSFUNCTION Has difficulty discriminating boundaries between items Focus on color contrast in terms of the food to the plate or cup, and the contrast of the plate to the place mat. Supporting visual interpretation can reduce the resident’s anxiety. Communication: Understanding and being understood Develop a list of food preferences and dislikes. Use multisensory cueing with frequent pointing. Lift the item away from the table or lift the food from the plate to regain attention. Use verbal encouragement, such as, “This is a new recipe I want to cook for my daughter. Would you please try it and tell me what you think?” When asking questions about food choices, use “either/or” questions rather than “yes/no” questions, which could lead to “nos” and not eating. Weight gain/loss Doubling up on breakfast may help to maintain weight. Offer snacks between meals and before bedtime. Alternate hot and cold foods to help trigger a swallow. Establish a policy so that honey and sugar may be used on food, if medically appropriate, as these entice residents to eat. Sweet taste receptors remain intact through the end stage; therefore, residents with end-stage disease usually favor sweets and can be enticed to eat by adding sweet thickeners to their foods. Offer high-protein and increased calorie foods. PERCEPTUAL DYSFUNCTION Has difficulty discriminating boundaries between items Focus on color contrast in terms of the food to the plate or cup, and the contrast of the plate to the place mat. Supporting visual interpretation can reduce the resident’s anxiety. Communication: Understanding and being understood Develop a list of food preferences and dislikes. Use multisensory cueing with frequent pointing. Lift the item away from the table or lift the food from the plate to regain attention. Use verbal encouragement, such as, “This is a new recipe I want to cook for my daughter. Would you please try it and tell me what you think?” When asking questions about food choices, use “either/or” questions rather than “yes/no” questions, which could lead to “nos” and not eating. Weight gain/loss Doubling up on breakfast may help to maintain weight. Offer snacks between meals and before bedtime. Alternate hot and cold foods to help trigger a swallow. Establish a policy so that honey and sugar may be used on food, if medically appropriate, as these entice residents to eat. Sweet taste receptors remain intact through the end stage; therefore, residents with end-stage disease usually favor sweets and can be enticed to eat by adding sweet thickeners to their foods. Offer high-protein and increased calorie foods.

29. 29 Optimal Task Presentation Visual World Shrinks Early Stage Dementia – 14 – 24 inches Middle Stage Dementia – 7-14 inches With visual perceptual deficits Late Stage Dementia – 7 inches from the midline Significantly diminished visual perceptual processing

30. 30 To Thicken or Not To Thicken Review of the best practice guide Evidence

31. 31 Nourishing Full Liquid Diet Michelle: Suggest this slide be deleted and replaced with new slides.Michelle: Suggest this slide be deleted and replaced with new slides.

32. 32 Finger Food Finger Food Includes food that are easy to eat without a utensil To provide adequate nutrition & variety, some foods requiring utensils are included Purpose is to allow persons to retain or increase the individuals independence in dining Can be combined with a mechanical soft diet if an altered texture is needed Most meats are ground Gravy or sauce planned when appropriate Raw fruits/vegetables generally excluded unless modified consistent is appropriate All other foods are regular consistency Review slide This diet is typically only used in skilled nursing center, not a hospital. Review slide This diet is typically only used in skilled nursing center, not a hospital.

33. 33 Enteral Feedings & Small Amounts of PO Enteral nutrition is eligible for Medicare Part B reimbursement for an individual with Part B benefits, not currently using Med A benefits or using a Medicare/Managed Care benefit.   Coverage guidelines indicate:"The patient must require tube feedings to maintain weight and strength commensurate with the patient's overall health status. Adequate nutrition must not be possible by dietary adjustment and/or oral supplements. Coverage is possible for patients with partial impairments - e.g., a patient with dysphagia who can swallow small amounts of food or a patient with Crohn's disease who requires prolonged infusion of enteral nutrients to overcome a problem with absorption." Refer to the following website:http://www.cms.hhs.gov/mcd/viewarticle.asp?article_id=25361&article_version=5&show=all Clarify that this only applies to residents living in a nursing center (including a skilled nursing unit of a hospital) or in home care. Enteral Feeding and End-of-Life Decisions More than one-third of severely cognitively impaired elderly residents in U.S. nursing homes have feeding tubes. However, studies by Murphy and Lipman, as well as Finucane et al, conclude that there are no documented changes in nutritional status, pressure sores, or other functional status following gastrostomy tube placement in these residents.1,2 Tube feeding is not proven to prevent “wasting away,” and there is no survival benefit in residents with dementia who receive enteral feeding. Issues related to enteral feeding to sustain life in the end stage of dementia should be discussed with the resident and family early in the disease process. It is optimal for the person to state his/her own preference regarding enteral feeding before losing the ability to communicate such complex ideas. If the resident cannot do this, it is important to provide caregivers with adequate information regarding available treatment options and the consequences related to nutritional intake. Clarify that this only applies to residents living in a nursing center (including a skilled nursing unit of a hospital) or in home care. Enteral Feeding and End-of-Life Decisions More than one-third of severely cognitively impaired elderly residents in U.S. nursing homes have feeding tubes. However, studies by Murphy and Lipman, as well as Finucane et al, conclude that there are no documented changes in nutritional status, pressure sores, or other functional status following gastrostomy tube placement in these residents.1,2 Tube feeding is not proven to prevent “wasting away,” and there is no survival benefit in residents with dementia who receive enteral feeding. Issues related to enteral feeding to sustain life in the end stage of dementia should be discussed with the resident and family early in the disease process. It is optimal for the person to state his/her own preference regarding enteral feeding before losing the ability to communicate such complex ideas. If the resident cannot do this, it is important to provide caregivers with adequate information regarding available treatment options and the consequences related to nutritional intake.

34. 34 Enteral Feeding Appropriate use of PEG Advanced Dementia Population End of Life Population

35. 35 Adaptive Equipment Feeding Positioning Oral phase swallowing function Pharyngeal phase swallowing function Review CSBReview CSB

36. 36 Cognitive Based Dysphagia: Team Members Team Building Team Education & Training This is one reason a facility can benefit from the involvement of a speech-language pathologist (SLP). The role of the SLP will change over time because of the progressive nature of the dementia disease process and its effect on swallowing function and nutrition. The SLP’s goal is the same as Medicare’s number one goal in these residents: “facilitating and maintaining safety for the resident during swallowing and p.o. intake” (Medicare Transmittal No. 597, Medicare Hospital Manual). It is imperative that the SLP, as well as the director of nursing and other key members of the caregiving team, have a solid understanding of dysphagia and appropriate treatment and management techniques specific to the disorder. Administrators and other nursing home professionals will also benefit from a general understanding of the complexities of caring for these residents. Managing Dysphagia in Residents with Dementia SKILLED INTERVENTION FOR A COMMON—AND TROUBLING—DISORDER BY SUE CURFMAN, MA, CCC Source of article: Nursing Homes/Long Term Care Management Adapted with permission from an original article published at www.speechpathology.com. This is one reason a facility can benefit from the involvement of a speech-language pathologist (SLP). The role of the SLP will change over time because of the progressive nature of the dementia disease process and its effect on swallowing function and nutrition. The SLP’s goal is the same as Medicare’s number one goal in these residents: “facilitating and maintaining safety for the resident during swallowing and p.o. intake” (Medicare Transmittal No. 597, Medicare Hospital Manual). It is imperative that the SLP, as well as the director of nursing and other key members of the caregiving team, have a solid understanding of dysphagia and appropriate treatment and management techniques specific to the disorder. Administrators and other nursing home professionals will also benefit from a general understanding of the complexities of caring for these residents. Managing Dysphagia in Residents with Dementia SKILLED INTERVENTION FOR A COMMON—AND TROUBLING—DISORDER BY SUE CURFMAN, MA, CCC Source of article: Nursing Homes/Long Term Care Management Adapted with permission from an original article published at www.speechpathology.com.

37. 37 Caregiver Education and Training ASK …... What do I want skilled treatment to accomplish? What do I want the resident to be able to do? Is the goal to accomplish Rx tasks with some degree of independence or with a certain amount / type of assistance? Are there individualized strategies that can be useful in attaining or approaching goals that I can instruct a caregiver in order to maintain safety and quality of life?

38. 10/18/2011 SLP Role in Late Stage Dementia and End of Life Dysphagia Considerations and Research

39. 39 End of Life Population Seriously ill patients exhibiting multiple comorbidities Advanced age Terminal illness Progressive / chronic disease Advanced dementia Does not include patients in persistent vegetative state Dysphagia Care & End of Life Michelle Best Practice includes bedside and possible instrumentation (Refer to CSB). The dysphagia evaluation also includes review of the patient’s current and premorbid levels of function, medical status, nutrition and hydration status and patient/family wishes. Once this information is gathered, the SLP needs to weigh the swallow prognosis and nutrition/hydration options with the patient’s medical prognosis. We need to ask, “How close is this patient to end of life?” Michelle Best Practice includes bedside and possible instrumentation (Refer to CSB). The dysphagia evaluation also includes review of the patient’s current and premorbid levels of function, medical status, nutrition and hydration status and patient/family wishes. Once this information is gathered, the SLP needs to weigh the swallow prognosis and nutrition/hydration options with the patient’s medical prognosis. We need to ask, “How close is this patient to end of life?”

40. 40 Identifying the EOL Patient Communication with the healthcare team Brown’s End of Life Decision Tool Compares PLOF to medical status Treatment Plan Development Trial treatment / Short term treatment (Safety focus) Prerequisite discussions: medical indications, patient preferences, quality of life and contextual features. Feeding versus Non-feeding options Oral / Enteral / Parenteral / Combo / Withholding All Dysphagia Care & End of Life Michelle Family members repeatedly state they do not want their relative to “starve to death” 50% of medcial professionals still believe that even if all forms of life support including mechanical ventilation and dialysis are stopped, nutrition and hydration should always be continued. As a result when pt.s w/ advanced dementia start to demonstrate dysphagia or lose interest in eating. Thus PEG tubes are used with increased frequency. How can we help physicians and surrogate decision makers make compassionate, morally sound, and technically reasonable decisions about the treatment of persons with advanced dementia? Ideally, such decisions should reflect the preferences and values of the patient and should arise from a clear determination of the overall goals of care. Unfortunately, preferences of the patient are seldom known, and the goals of care — such as prolonging life, promoting independence in activities of daily living, or maximizing comfort — cannot readily be translated into practice. Surrogate decision makers for demented patients who opt for feeding through a gastrostomy tube usually do so because they hope to extend life and prevent aspiration pneumonia, because they wish to prevent suffering, or because their values, particularly their religious beliefs, dictate that sustenance must never be withheld. Recent information supports the conclusion that tube feeding seldom achieves the intended medical aims and that rather than prevent suffering, it can cause Religious and bio ethicists have come to the conclusion that feeding tubes are not required in patients with advanced dementia Many believe that given the weight of the scientific evidence that gastrostomy tubes are not effective and given the lack of a compelling ethical argument for their use, many have suggested that physicians, nursing homes, and hospitals adopt a policy of recommending that gastrostomy tubes not be used in patients with advanced dementia. Why? Do Feeding Tubes Work in Patients with Dementia? A gastrostomy tube is placed in a patient to provide nutrition and hydration. Although in theory tube feeding can provide adequate nutrition in a patient with dementia, in reality this is often not the case. Issues - diarrhea, clogging of the tubes, and the tendency of patients with dementia to pull out the tubes, nutritional status often does not improve with the use of feeding tubes. Aside from maintaining nutrition, one of the primary reasons to use a feeding tube is to interrupt the cycle of eating, aspiration, and then pneumonia that is so common in patients with advanced dementia. It is now clear from multiple observational studies that feeding tubes do not prevent aspiration in patients with dementia. The continued risk of aspiration appears to result from reflux of gastric contents and aspiration of saliva. Despite the lack of evidence that tube feeding reduces the risk of aspiration in persons with dementia who have difficulty swallowing, the standard of care in many institutions is to withhold oral intake and to insert a gastrostomy tube if there is videofluoroscopic evidence of aspiration. Studies find that the patients who were fed through a gastrostomy tube and those who continued to be fed by hand had the same survival rates. Other studies have confirmed that swallowing or eating problems in patients with dementia are independently associated with mortality, regardless of whether a gastrostomy tube is in place. These were observational studies, however, not randomized trials thus there are un accounted for variables (vascular dementia patients, group of patients with TF were possibly sicker…) Explaination for failure of TF to be effective: Difficulty with eating is a marker of severe dementia, which is a uniformly fatal disorder. Since eating is typically among the last activities of daily living to become impaired in persons with dementia, difficulty with eating unfortunately signals that the person has entered the final phase of the illness. DO Feeding Tubes Promote the Comfort of Patients with Advanced Dementia? Families and physicians often believe that the use of a feeding tube will promote the comfort of a person with advanced dementia. Is a person with advanced dementia who has difficulty eating actually uncomfortable in the absence of artificial nutrition and hydration? Due to cog-linguistic deficits, it is difficult, if not impossible, to obtain data on the subjective experience of patients with advanced dementia who stop eating and drinking. We can, however, try to extrapolate from the experience of patients dying of cancer or stroke who have who are sufficiently lucid to describe their sensations. A growing literature from the hospice movement indicates that such patients do not experience more than transient hunger and that any thirst they experience can be alleviated with ice chips, oral care and swabs. Moreover, many elderly patients do not feel distress from dehydration because they have an impaired thirst mechanism which also serves to minimize discomfort. A few observers have suggested that maintaining hydration promotes comfort by preventing delirium, but most clinicians find that, on balance, hydration without nutrition causes discomfort, because it prolongs the process of dying and increases the production of urine and sputum. Not only do gastrostomy tubes fail to prevent suffering, they may actually cause it. The percutaneous insertion of a gastrostomy tube, the most common method used, requires upper endoscopy, an incision in the abdominal wall, and intravenous sedation. Once the endoscope is in place, the permanent gastrostomy tube is threaded into the stomach, anchored in place, and pulled through the abdominal wall. Although it is a relatively simple procedure, the long-term rate of complications has been reported to range from 32 percent to 70 percent. The problems, such as superficial skin infections and dislodgment or clogging of the tube, are usually relatively minor. When tube feeding is used as a permanent alternative to oral feeding, patients are deprived of the enjoyment derived from eating. Patients with dementia who are fed through a tube no longer have the opportunity to taste food or experience the social satisfaction associated with mealtimes. Feeding by hand is an act of nurturing that cannot be accomplished by hanging a bag of nutrients on a pole for delivery through a tube. These problems might be overcome — but only in some instances and to a limited extent — by supplementing tube feeding with the provision of small amounts of food to persons with dementia who have difficulty swallowing. Refer to CSB for Recreational PO. The most serious potential adverse consequence of tube feeding is the need to restrain the patient. A patient with advanced dementia does not have the cognitive capacity to understand why a tube is protruding from the abdominal wall and often pulls it out. To prevent the patient from removing the tube, the physician frequently orders the use of restraints. In one study, 71 percent of patients with dementia who had feeding tubes were restrained, regardless of the type of tube used. TF presence is associated with the use of restraints. The experience of being restained is distressing, even to persons with severe dementia, and it often results in agitation, which in turn may lead to the use of pharmacologic sedation. In summary, data collected over the past decade suggest that gastrostomy tubes are not necessary to prevent suffering and may actually cause suffering. Is Withholding Artificial Nutrition Morally Wrong? Most religions will weigh the risks and benefits even if they advocate for AHN at end stage. A study of 421 randomly selected, competent persons living in 49 nursing homes found that only one third would favor a feeding tube if they were unable to eat because of permanent brain damage. Moreover, 25 percent of the respondents who initially favored tube feeding changed their minds about its acceptability when they learned that they might have to be physically restrained to facilitate use of the tube. Obstacles to a New Standard of Care 2 states, Missouri and New York, have adopted such a policy for decisions about artificial nutrition and hydration. They have statutes requiring "clear and convincing" evidence that an incompetent patient would not have wanted tube feeding in order for a surrogate decision maker to authorize the withholding of tube feeding. The assumptions underlying such laws are that tube feeding is a life-sustaining treatment and that the state has an interest in protecting life. Such laws are clearly applicable to patients like Cruzan, who was in a persistent vegetative state, and who could be maintained by a feeding tube indefinitely. The relevance of the laws to patients with advanced dementia, a condition in which medical intervention offers little chance of prolonging life, is highly questionable. As Lo and Steinbrook have pointed out, "It would be irrational to interpret the Cruzan ruling as requiring that futile treatment be administered to incompetent patients merely because they had not given clear and convincing evidence of refusal." Regulations governing nursing homes are another potential barrier to the implementation of a new standard of care. Federal regulations require nursing homes to ensure that their residents have "acceptable parameters of nutritional status, such as body weight and protein levels, unless the resident's clinical condition demonstrates that this is not possible." Physicians should take the initiative in promoting hand feeding and allow state legislatures and nursing home regulators to follow their lead. Michelle Family members repeatedly state they do not want their relative to “starve to death” 50% of medcial professionals still believe that even if all forms of life support including mechanical ventilation and dialysis are stopped, nutrition and hydration should always be continued. As a result when pt.s w/ advanced dementia start to demonstrate dysphagia or lose interest in eating. Thus PEG tubes are used with increased frequency. How can we help physicians and surrogate decision makers make compassionate, morally sound, and technically reasonable decisions about the treatment of persons with advanced dementia? Ideally, such decisions should reflect the preferences and values of the patient and should arise from a clear determination of the overall goals of care. Unfortunately, preferences of the patient are seldom known, and the goals of care — such as prolonging life, promoting independence in activities of daily living, or maximizing comfort — cannot readily be translated into practice. Surrogate decision makers for demented patients who opt for feeding through a gastrostomy tube usually do so because they hope to extend life and prevent aspiration pneumonia, because they wish to prevent suffering, or because their values, particularly their religious beliefs, dictate that sustenance must never be withheld. Recent information supports the conclusion that tube feeding seldom achieves the intended medical aims and that rather than prevent suffering, it can cause Religious and bio ethicists have come to the conclusion that feeding tubes are not required in patients with advanced dementia Many believe that given the weight of the scientific evidence that gastrostomy tubes are not effective and given the lack of a compelling ethical argument for their use, many have suggested that physicians, nursing homes, and hospitals adopt a policy of recommending that gastrostomy tubes not be used in patients with advanced dementia. Why? Do Feeding Tubes Work in Patients with Dementia? A gastrostomy tube is placed in a patient to provide nutrition and hydration. Although in theory tube feeding can provide adequate nutrition in a patient with dementia, in reality this is often not the case. Issues - diarrhea, clogging of the tubes, and the tendency of patients with dementia to pull out the tubes, nutritional status often does not improve with the use of feeding tubes. Aside from maintaining nutrition, one of the primary reasons to use a feeding tube is to interrupt the cycle of eating, aspiration, and then pneumonia that is so common in patients with advanced dementia. It is now clear from multiple observational studies that feeding tubes do not prevent aspiration in patients with dementia. The continued risk of aspiration appears to result from reflux of gastric contents and aspiration of saliva. Despite the lack of evidence that tube feeding reduces the risk of aspiration in persons with dementia who have difficulty swallowing, the standard of care in many institutions is to withhold oral intake and to insert a gastrostomy tube if there is videofluoroscopic evidence of aspiration. Studies find that the patients who were fed through a gastrostomy tube and those who continued to be fed by hand had the same survival rates. Other studies have confirmed that swallowing or eating problems in patients with dementia are independently associated with mortality, regardless of whether a gastrostomy tube is in place. These were observational studies, however, not randomized trials thus there are un accounted for variables (vascular dementia patients, group of patients with TF were possibly sicker…) Explaination for failure of TF to be effective: Difficulty with eating is a marker of severe dementia, which is a uniformly fatal disorder. Since eating is typically among the last activities of daily living to become impaired in persons with dementia, difficulty with eating unfortunately signals that the person has entered the final phase of the illness. DO Feeding Tubes Promote the Comfort of Patients with Advanced Dementia? Families and physicians often believe that the use of a feeding tube will promote the comfort of a person with advanced dementia. Is a person with advanced dementia who has difficulty eating actually uncomfortable in the absence of artificial nutrition and hydration? Due to cog-linguistic deficits, it is difficult, if not impossible, to obtain data on the subjective experience of patients with advanced dementia who stop eating and drinking. We can, however, try to extrapolate from the experience of patients dying of cancer or stroke who have who are sufficiently lucid to describe their sensations. A growing literature from the hospice movement indicates that such patients do not experience more than transient hunger and that any thirst they experience can be alleviated with ice chips, oral care and swabs. Moreover, many elderly patients do not feel distress from dehydration because they have an impaired thirst mechanism which also serves to minimize discomfort. A few observers have suggested that maintaining hydration promotes comfort by preventing delirium, but most clinicians find that, on balance, hydration without nutrition causes discomfort, because it prolongs the process of dying and increases the production of urine and sputum. Not only do gastrostomy tubes fail to prevent suffering, they may actually cause it. The percutaneous insertion of a gastrostomy tube, the most common method used, requires upper endoscopy, an incision in the abdominal wall, and intravenous sedation. Once the endoscope is in place, the permanent gastrostomy tube is threaded into the stomach, anchored in place, and pulled through the abdominal wall. Although it is a relatively simple procedure, the long-term rate of complications has been reported to range from 32 percent to 70 percent. The problems, such as superficial skin infections and dislodgment or clogging of the tube, are usually relatively minor. When tube feeding is used as a permanent alternative to oral feeding, patients are deprived of the enjoyment derived from eating. Patients with dementia who are fed through a tube no longer have the opportunity to taste food or experience the social satisfaction associated with mealtimes. Feeding by hand is an act of nurturing that cannot be accomplished by hanging a bag of nutrients on a pole for delivery through a tube. These problems might be overcome — but only in some instances and to a limited extent — by supplementing tube feeding with the provision of small amounts of food to persons with dementia who have difficulty swallowing. Refer to CSB for Recreational PO. The most serious potential adverse consequence of tube feeding is the need to restrain the patient. A patient with advanced dementia does not have the cognitive capacity to understand why a tube is protruding from the abdominal wall and often pulls it out. To prevent the patient from removing the tube, the physician frequently orders the use of restraints. In one study, 71 percent of patients with dementia who had feeding tubes were restrained, regardless of the type of tube used. TF presence is associated with the use of restraints. The experience of being restained is distressing, even to persons with severe dementia, and it often results in agitation, which in turn may lead to the use of pharmacologic sedation. In summary, data collected over the past decade suggest that gastrostomy tubes are not necessary to prevent suffering and may actually cause suffering. Is Withholding Artificial Nutrition Morally Wrong? Most religions will weigh the risks and benefits even if they advocate for AHN at end stage. A study of 421 randomly selected, competent persons living in 49 nursing homes found that only one third would favor a feeding tube if they were unable to eat because of permanent brain damage. Moreover, 25 percent of the respondents who initially favored tube feeding changed their minds about its acceptability when they learned that they might have to be physically restrained to facilitate use of the tube. Obstacles to a New Standard of Care 2 states, Missouri and New York, have adopted such a policy for decisions about artificial nutrition and hydration. They have statutes requiring "clear and convincing" evidence that an incompetent patient would not have wanted tube feeding in order for a surrogate decision maker to authorize the withholding of tube feeding. The assumptions underlying such laws are that tube feeding is a life-sustaining treatment and that the state has an interest in protecting life. Such laws are clearly applicable to patients like Cruzan, who was in a persistent vegetative state, and who could be maintained by a feeding tube indefinitely. The relevance of the laws to patients with advanced dementia, a condition in which medical intervention offers little chance of prolonging life, is highly questionable. As Lo and Steinbrook have pointed out, "It would be irrational to interpret the Cruzan ruling as requiring that futile treatment be administered to incompetent patients merely because they had not given clear and convincing evidence of refusal." Regulations governing nursing homes are another potential barrier to the implementation of a new standard of care. Federal regulations require nursing homes to ensure that their residents have "acceptable parameters of nutritional status, such as body weight and protein levels, unless the resident's clinical condition demonstrates that this is not possible." Physicians should take the initiative in promoting hand feeding and allow state legislatures and nursing home regulators to follow their lead.

41. 41 Cognition and Determining Decision Making Capacity Michelle Variables in any cognitive assessment independent of dx such as delirium, dementia or depression: Wax and wane of cog status, meds, anxiety, time of day, environmental factors A Framework for Assessing Capacity to Make Medical Decisions - Can the person make and express personal preferences at all? - Can the person give reasons for the alternatives selected? - Are the supporting reasons rational in the sense that the person begins with a plausible idea and reasons logically from that premise to a result? - Can the person comprehend the personal implications, namely the probable risks and benefits, of the various choices presented and selected? A framework for assessing decision-making capacity The capacity to make decisions implies the ability to: communicate choices understand relevant information appreciate the idea of consequences, and to manipulate information rationally To make medical decisions, a person must be able to understand the nature of the illness for which a particular treatment is offered, the probable course of the illness without the proposed treatment, and the nature and consequences of treatment options, including risks and benefits. When determining decision-making capacity, one should attempt to understand how the patient arrived at a decision and to recognize the influence of the patient's personal values. No single test or instrument is adequate to determine decision-making capacity, and the results of any test need to be interpreted in the context of the whole clinical presentation – the big picture. The mini-mental status exam (MMSE), for example, though helpful as a screening tool for detecting cognitive impairment, is neither sensitive nor specific for evaluating decision -making capacity, especially in the middle range of its scoring. Informally the best method to gain insight into DMC is: Via asking open ended questions – “Can you describe your illness, diagnosis, what has happened to you medically?’ Decision making capacity is reflected in consistent responses to questions that are phrased in different ways. Patient's performance may be improved by repetition, enhancing the disclosure of information with visual aids and cueing, addressing psychological issues, or facilitating family support. Tools for Eval of DMC w/ Neurpsych ACE – Aid to Capacity Evaluation- Dr. Etchells Site Article MacArthur Competence Assessment Tool for Treatment (MacCAT-T) for Eval of DMC The assessment of decision-making capacity is often a very emotional issue, as we are commonly asked to perform such evaluations when there is conflict between the patient, family, and treatment team. Like many clinicians, I do not use one tool for the evaluation of decision-making capacity. It is most important to keep in mind that any evaluation of decision-making capacity should be as specific as possible. Often clarifying the specific issue in question is helpful to both the treatment team and the patient. Using the basic MODEL of: Understanding, Appreciation, Reasoning, and Communication, an evaluation of decision-making capacity can be made in almost every case. The MacCAT-T, which utilizes these four basic items, offers clinicians a semistructured interview with prepared forms and a rating scale for evaluating responses. At times, it may be necessary to evaluate the patient on more than one occasion, and at varying times of the day. Neuropsychological testing is usually utilized in cases where the diagnosis is unclear, or if the patient presents with cognitive deficits of an unusual nature. Utilize the interdisciplinary team and significant others for collateral information, and then listen to the patient. State the importance of considering the Cognitive Heirarchy of Skills r/t the cog linguistic skills required for capacity demonstration during eval. Decision-making by mentally incapacitated long-term care facility residents Long-term care facility residents judged to be incompetent may still possess the capacity for making some decisions, particularly about such personally meaningful things as what to wear and what to eat. Thus, an incompetent person may possess the capacity to make meaningful personal decisions and yet lack the legal authority to do so. Among the major losses experienced by people admitted to nursing facilities are loss of independence, loss of control over daily schedules, and often loss of the ability to perform basic activities of daily living. Consequently, the decisions that nursing home residents remain able to make loom large, representing the last vestiges of personal control. Thus it may be advantageous, for the sake of their quality of life, to ensure that even those residents who are incompetent, and those mentally incapacitated residents who simply lack the ability to make complex reasoned decisions, are encouraged to make those decisions they are able to make for themselves. The idea of providing choices to incapacitated people in the spirit of preserving and respecting their dignity has been described as part of 'everyday ethics.' 17 The choices offered to mentally incapacitated people should not involve risks to their health if they make unwise choices. The goal is to balance the risks inherent in poor decisions against the loss of autonomy.1 Michelle Variables in any cognitive assessment independent of dx such as delirium, dementia or depression: Wax and wane of cog status, meds, anxiety, time of day, environmental factors A Framework for Assessing Capacity to Make Medical Decisions - Can the person make and express personal preferences at all? - Can the person give reasons for the alternatives selected? - Are the supporting reasons rational in the sense that the person begins with a plausible idea and reasons logically from that premise to a result? - Can the person comprehend the personal implications, namely the probable risks and benefits, of the various choices presented and selected? A framework for assessing decision-making capacity The capacity to make decisions implies the ability to: communicate choices understand relevant information appreciate the idea of consequences, and to manipulate information rationally To make medical decisions, a person must be able to understand the nature of the illness for which a particular treatment is offered, the probable course of the illness without the proposed treatment, and the nature and consequences of treatment options, including risks and benefits. When determining decision-making capacity, one should attempt to understand how the patient arrived at a decision and to recognize the influence of the patient's personal values. No single test or instrument is adequate to determine decision-making capacity, and the results of any test need to be interpreted in the context of the whole clinical presentation – the big picture. The mini-mental status exam (MMSE), for example, though helpful as a screening tool for detecting cognitive impairment, is neither sensitive nor specific for evaluating decision -making capacity, especially in the middle range of its scoring. Informally the best method to gain insight into DMC is: Via asking open ended questions – “Can you describe your illness, diagnosis, what has happened to you medically?’ Decision making capacity is reflected in consistent responses to questions that are phrased in different ways. Patient's performance may be improved by repetition, enhancing the disclosure of information with visual aids and cueing, addressing psychological issues, or facilitating family support. Tools for Eval of DMC w/ Neurpsych ACE – Aid to Capacity Evaluation- Dr. Etchells Site Article MacArthur Competence Assessment Tool for Treatment (MacCAT-T) for Eval of DMC The assessment of decision-making capacity is often a very emotional issue, as we are commonly asked to perform such evaluations when there is conflict between the patient, family, and treatment team. Like many clinicians, I do not use one tool for the evaluation of decision-making capacity. It is most important to keep in mind that any evaluation of decision-making capacity should be as specific as possible. Often clarifying the specific issue in question is helpful to both the treatment team and the patient. Using the basic MODEL of: Understanding, Appreciation, Reasoning, and Communication, an evaluation of decision-making capacity can be made in almost every case. The MacCAT-T, which utilizes these four basic items, offers clinicians a semistructured interview with prepared forms and a rating scale for evaluating responses. At times, it may be necessary to evaluate the patient on more than one occasion, and at varying times of the day. Neuropsychological testing is usually utilized in cases where the diagnosis is unclear, or if the patient presents with cognitive deficits of an unusual nature. Utilize the interdisciplinary team and significant others for collateral information, and then listen to the patient. State the importance of considering the Cognitive Heirarchy of Skills r/t the cog linguistic skills required for capacity demonstration during eval. Decision-making by mentally incapacitated long-term care facility residents Long-term care facility residents judged to be incompetent may still possess the capacity for making some decisions, particularly about such personally meaningful things as what to wear and what to eat. Thus, an incompetent person may possess the capacity to make meaningful personal decisions and yet lack the legal authority to do so. Among the major losses experienced by people admitted to nursing facilities are loss of independence, loss of control over daily schedules, and often loss of the ability to perform basic activities of daily living. Consequently, the decisions that nursing home residents remain able to make loom large, representing the last vestiges of personal control. Thus it may be advantageous, for the sake of their quality of life, to ensure that even those residents who are incompetent, and those mentally incapacitated residents who simply lack the ability to make complex reasoned decisions, are encouraged to make those decisions they are able to make for themselves. The idea of providing choices to incapacitated people in the spirit of preserving and respecting their dignity has been described as part of 'everyday ethics.' 17 The choices offered to mentally incapacitated people should not involve risks to their health if they make unwise choices. The goal is to balance the risks inherent in poor decisions against the loss of autonomy.1

42. 42 Competence and Informed Consent / Patient Refusal Legal Cognition and decision making capacity Reasons why patient’s refuse When patients choose different tx Waiver Issues Only as useful as the discussion that leads to informed consent / refusal May be viewed as coercive May limited modifications later May conflict w/ MD order SLP DOES follow thru as part of the Palliative Care Team Review CSB Right to Refuse SLP Does not terminate care Skilled dysphagia / communication care is a decision independent of communication as a part of the Palliative Care Team – we may or may not continue to tx a patient depending on the big picture variables. Difference between waiver and IC Waiver – May be considered coersive, May limit pt. ability to come back and ask for help at a later date if they have a chnge of heart Instead – Do Use IC Process: Document pt. rationale, DMC, educatio and training provided and response to that training – more important than the piece of paper SLP DOES follow thru as part of the Palliative Care Team Review CSB Right to Refuse SLP Does not terminate care Skilled dysphagia / communication care is a decision independent of communication as a part of the Palliative Care Team – we may or may not continue to tx a patient depending on the big picture variables. Difference between waiver and IC Waiver – May be considered coersive, May limit pt. ability to come back and ask for help at a later date if they have a chnge of heart Instead – Do Use IC Process: Document pt. rationale, DMC, educatio and training provided and response to that training – more important than the piece of paper

43. 43 Support the patients right to decide Emphasize education and training Give families the confidence to provide comfort care State laws for EOL care Documentation Diagnoses, prognoses Risks and benefits of all options discussed Dysphagia clinical presentation Patient and family wishes / decisions Legal documents and MD code orders Dysphagia Care & End of Life MichelleMichelle

44. 44 Dysphagia Care & End of Life The Dilemma Artificial hydration and nutrition Benefit versus harm American Academy of Hospice and Palliative Medicine: AHN is potentially harmful Can the body adequately utilize nutrition and hydration at EOL? Can withholding AHN increase patient comfort? The medical community’s longstanding assumption AHN Benefits – prolongs life, minimizes aspiration, promotes nutrition, heals wounds, improves function – NOT in EOL population. Michelle For much of the 20th centrury TFs were considered necessary tx for the advanced AD patient with swallowing and eating issues. Yet research does not support the benefits We have NO evidencethat enteral feeding tubes benefit patients with dementia, yet more and more patients end up with just that. Research receommends: EOL training for all HC practitioners and palliative care consultants in each facility.Michelle For much of the 20th centrury TFs were considered necessary tx for the advanced AD patient with swallowing and eating issues. Yet research does not support the benefits We have NO evidencethat enteral feeding tubes benefit patients with dementia, yet more and more patients end up with just that. Research receommends: EOL training for all HC practitioners and palliative care consultants in each facility.

45. 10/18/2011 American Academy of Hospice and Palliative Medicine Position Statement on Artificial Nutrition and Hydration Michelle and Linda AAHPM Position Statement on AHN To provide clarity on the use of artificial hydration and nutrition, the American Academy of Hospice and Palliative Medicine offers the following position statement: The American Academy of Hospice and Palliative Medicine recognizes dying as an expected natural process in the human life cycle. AAHPM supports excellence in end-of-life care with attention to relief of physical, psychological, spiritual, and social distress in the dying process for patients and their families. Hydration and nutrition are traditionally considered useful and necessary components of good medical care. They are provided with the primary intention of benefiting the patient. However, when a person is approaching death, the provision of artificial hydration and nutrition is potentially harmful and may provide little or no benefit to the patient and at times may make the period of dying more uncomfortable for both patient and family. For this reason, the AAHPM believes that the withholding of artificial hydration and nutrition near the end of life may be appropriate and beneficial medical care. Clinical judgment and skill in assessment of individual clinical situations is necessary to determine when artificial hydration and nutrition are appropriate measures to apply. Potential contraindications to artificial hydration and nutrition For many patients near the end oflife, the burdens of AHN outweigh its benefits. Listing of potential complications of AHN – Refer to Table Largest risk AHN poses to dying individuals is the potential for fluid overload leading to peripheral edema, pulmonary congestion, if not pulmonary edema among other complications. Should these problems occur, they not only cause discomfort, but may in fact hasten the patient’s death. Two recent reviews of the data found no evidence that AHN prolongs life or diminishes suffering in patients with advanced dementia. The studies concluded that percutaneous endoscopic gastrostomy (PEG) tubes should not be used in severely demented patients at the end of life, because the burdens of PEG outweigh the benefits. The authors recommend that a palliative care concept be pursued instead, possibly because PEG tubes do not decrease the incidence of aspiration. Michelle and Linda AAHPM Position Statement on AHN To provide clarity on the use of artificial hydration and nutrition, the American Academy of Hospice and Palliative Medicine offers the following position statement: The American Academy of Hospice and Palliative Medicine recognizes dying as an expected natural process in the human life cycle. AAHPM supports excellence in end-of-life care with attention to relief of physical, psychological, spiritual, and social distress in the dying process for patients and their families. Hydration and nutrition are traditionally considered useful and necessary components of good medical care. They are provided with the primary intention of benefiting the patient. However, when a person is approaching death, the provision of artificial hydration and nutrition is potentially harmful and may provide little or no benefit to the patient and at times may make the period of dying more uncomfortable for both patient and family. For this reason, the AAHPM believes that the withholding of artificial hydration and nutrition near the end of life may be appropriate and beneficial medical care. Clinical judgment and skill in assessment of individual clinical situations is necessary to determine when artificial hydration and nutrition are appropriate measures to apply. Potential contraindications to artificial hydration and nutrition For many patients near the end oflife, the burdens of AHN outweigh its benefits. Listing of potential complications of AHN – Refer to Table Largest risk AHN poses to dying individuals is the potential for fluid overload leading to peripheral edema, pulmonary congestion, if not pulmonary edema among other complications. Should these problems occur, they not only cause discomfort, but may in fact hasten the patient’s death. Two recent reviews of the data found no evidence that AHN prolongs life or diminishes suffering in patients with advanced dementia. The studies concluded that percutaneous endoscopic gastrostomy (PEG) tubes should not be used in severely demented patients at the end of life, because the burdens of PEG outweigh the benefits. The authors recommend that a palliative care concept be pursued instead, possibly because PEG tubes do not decrease the incidence of aspiration.

46. 46 The vital role of the SLP with EOL patients Helping the patient achieve a dignified death; honoring their beliefs and wishes For complex cases: Refer to the ombudsman or ethics committee Dysphagia Care & End of Life

47. 10/18/2011 Cases, Conclusions and Questions