Dementia in Hospice CareDementia in Hospice Care Part I: Stages, Hospice Guidelines, Part I: Stages, Hospice Guidelines,

and Assessing Pain/Discomfortand Assessing Pain/Discomfort

Amy Corcoran, MDAmy Corcoran, MDClinical InstructorClinical Instructor

Division of Geriatrics, Department of MedicineDivision of Geriatrics, Department of Medicine

December 5, 2007December 5, 2007

BackgroundBackground

WissahickonWissahickon Hospice Geriatric Hospice Geriatric Education Program Needs Education Program Needs

Assessment:Assessment:

88% care for older adults with dementia88% care for older adults with dementia

50% reported that 5150% reported that 51--75% of their patients 75% of their patients were over 65 yearswere over 65 years--oldold

Needs Assessment (cont)Needs Assessment (cont)

30% reported assessing/managing 30% reported assessing/managing delirium and pain in older adults at least delirium and pain in older adults at least once/weekonce/week

97% reported that being comfortable 97% reported that being comfortable caring for older adults with cognitive caring for older adults with cognitive impairment was important to themimpairment was important to them

99% would like to enhance their abilities to 99% would like to enhance their abilities to assess pain in cognitively impaired assess pain in cognitively impaired patientspatients

ObjectivesObjectives

To define and describe dementia as a To define and describe dementia as a terminal illnessterminal illness

To apply hospice guidelines for dementia To apply hospice guidelines for dementia for increased identification of eligibilityfor increased identification of eligibility

To assess pain and symptoms of To assess pain and symptoms of discomfort in patients with dementiadiscomfort in patients with dementia

To educate and negotiate with families To educate and negotiate with families about treating pain in patients with about treating pain in patients with dementiadementia

ObjectivesObjectives

To define and describe dementia as a To define and describe dementia as a terminal illnessterminal illness

To apply hospice guidelines for dementia To apply hospice guidelines for dementia for increased identification of eligibilityfor increased identification of eligibility

To assess pain and symptoms of To assess pain and symptoms of discomfort in patients with dementiadiscomfort in patients with dementia

To educate and negotiate with families To educate and negotiate with families about treating pain in patients with about treating pain in patients with dementiadementia

What is What is dementia?dementia?

www.ars.usda.gov/is/np/fnrb/fnrb0105.htm

What is dementia?What is dementia?

Decline in mental abilitiesDecline in mental abilities

Decline in functional abilitiesDecline in functional abilities

Medical Diagnosis: Medical Diagnosis:

Cognitive impairment noted in 2 domains by cognitive Cognitive impairment noted in 2 domains by cognitive testing, affecting daily life, and occurring over the past testing, affecting daily life, and occurring over the past 66--12months12months

Illness with progressive decline over 7Illness with progressive decline over 7--10 years10 years

Comparable to other illness (i.e. CHF, COPD)Comparable to other illness (i.e. CHF, COPD)

Trajectory of Chronic IllnessTrajectory of Chronic Illness

This is why prognostication is so difficult!

Case #1Case #1

88 year88 year--old female nursing home resident old female nursing home resident with Alzheimerwith Alzheimer’’s Dementia who has lived s Dementia who has lived there for the past 5 years since her husband there for the past 5 years since her husband passed away. She requires cueing for passed away. She requires cueing for dressing, bathing, and toileting, however dressing, bathing, and toileting, however eats independently when food is set up in eats independently when food is set up in front of her. She knows his name, but does front of her. She knows his name, but does not know the date or her residence and only not know the date or her residence and only sometimes she recognizes her children. sometimes she recognizes her children.

What stage of dementia does this lady What stage of dementia does this lady have? have?

Stages of DementiaStages of DementiaMILDMILD

FunctionFunction --independent of all ADLS, may need assistance independent of all ADLS, may need assistance with complex taskwith complex task

CognitionCognition --difficulty learning new informationdifficulty learning new information--memory loss interferes with everyday functionsmemory loss interferes with everyday functions--mild word finding difficulty but maintain social mild word finding difficulty but maintain social conversationconversation--mild judgment impairmentmild judgment impairment

BehaviorBehavior --mild personality changesmild personality changes

MMSEMMSE >>1919

MMSE=Mini-Mental Status Exam (30point question cognitive test)

Stages of DementiaStages of DementiaMODERATEMODERATE

FunctionFunction --independent of all ADLS, may need reminders or independent of all ADLS, may need reminders or minimal assistanceminimal assistance--assistance or complete dependence with assistance or complete dependence with IADLsIADLs

CognitionCognition --substantial memory loss, disoriented in time and substantial memory loss, disoriented in time and often to placeoften to place--conversation disorganized, ramblingconversation disorganized, rambling--impaired judgmentimpaired judgment

BehaviorBehavior --may have psychotic behavior, wandering, agitated may have psychotic behavior, wandering, agitated verbal or physical symptomsverbal or physical symptoms--sleep disturbancesleep disturbance--appears well enough to be taken to functions appears well enough to be taken to functions outside of home environmentoutside of home environment

MMSEMMSE 1212--1919

Stages of DementiaStages of DementiaSEVERESEVERE

FunctionFunction --dependent of all IADLdependent of all IADL--dependent of dependent of ADLsADLs (incontinent, may need (incontinent, may need assistance with eating) assistance with eating)

CognitionCognition --oriented to person onlyoriented to person only--only fragments of memory retainedonly fragments of memory retained--severe language impairmentsevere language impairment--inconsistent recognition of familiar peopleinconsistent recognition of familiar people--vary short attention spanvary short attention span

BehaviorBehavior --emotional emotional labilitylability--restlessnessrestlessness--inability to focus on tasksinability to focus on tasks--appears to ill to be taken to functions outside of appears to ill to be taken to functions outside of the home environmentthe home environment

MMSEMMSE 00--1111

Advanced Stages of DementiaAdvanced Stages of Dementia

TERMINALTERMINALFunctionFunction --inability to walk or sit up without assistanceinability to walk or sit up without assistance

--inability to smile or hold head upinability to smile or hold head up>>10% body weight loss, pressure ulcers >stage 2, 10% body weight loss, pressure ulcers >stage 2, UTIsUTIs, aspirations , aspirations pneumoniaspneumonias

CognitionCognition --few words spokenfew words spoken

BehaviorBehavior --passivepassive

MMSEMMSE Not testableNot testable

Cotter, VT, et al. Dementia. Geriatric Secrets 3rd Edition. Hanley & Belfus. 2004, pp53. Adapted from Cotter, VT: Forgetfulness. Goolsby, MJ. Nurse Practitioner Secrets. Philadelphia, Hanley & Belfus, 2002, pp64-70.

PROFOUNDPROFOUNDFunctionFunction --dependent of all IADLdependent of all IADL

--dependent of dependent of ADLsADLs (loss of ambulation, feeds with assistance) (loss of ambulation, feeds with assistance)

CognitionCognition --speaks <6 wordsspeaks <6 words--consistent difficulty in recognizing familiar peopleconsistent difficulty in recognizing familiar people

BehaviorBehavior --repetitive vocalizations, calling outrepetitive vocalizations, calling out

MMSEMMSE <11<11

ObjectivesObjectives

To define and describe dementia as a To define and describe dementia as a terminal illnessterminal illness

To apply hospice guidelines for dementia To apply hospice guidelines for dementia for increased identification of eligibilityfor increased identification of eligibility

To assess pain and symptoms of To assess pain and symptoms of discomfort in patients with dementiadiscomfort in patients with dementia

To educate and negotiate with families To educate and negotiate with families about treating pain in patients with about treating pain in patients with dementiadementia

Case #2Case #2

84y/o elderly woman with PMH of 84y/o elderly woman with PMH of moderate dementia, HTN, and urinary moderate dementia, HTN, and urinary incontinence who lives in assisted living incontinence who lives in assisted living with a fullwith a full--time caregiver. She was time caregiver. She was admitted to the hospital for new onset admitted to the hospital for new onset confusion. confusion.

Previous 6 monthsPrevious 6 months

Functional decline noted by both daughter Functional decline noted by both daughter and caregiverand caregiver

Less cooperative with careLess cooperative with care

Less talkative and less appropriate with Less talkative and less appropriate with answersanswers

Needing more assistance with all basic Needing more assistance with all basic Activities of Daily Living (Activities of Daily Living (ADLsADLs))

She has lost 20 pounds over the past 2 She has lost 20 pounds over the past 2 monthsmonths

Hospital StayHospital Stay

Found to have Acute Renal Failure thought to be Found to have Acute Renal Failure thought to be prepre--renal due to dehydration and poor renal due to dehydration and poor intakeintakeresolves with intravenous fluids.resolves with intravenous fluids.

As well as urinary tract infectionAs well as urinary tract infection---->resolves with >resolves with antibiotics.antibiotics.

During her hospitalization she develops a stage During her hospitalization she develops a stage 3 pressure ulcer.3 pressure ulcer.

Patient no longer able to get out of bed and Patient no longer able to get out of bed and requires maximum assistance with all requires maximum assistance with all ADLsADLs. . She is also not cooperating with physical She is also not cooperating with physical therapy.therapy.

Family DiscussionFamily Discussion

Family does not wish to pursue aggressive Family does not wish to pursue aggressive workwork--up.up.

Due to the progressive decline over the Due to the progressive decline over the past 6 months the team discusses options, past 6 months the team discusses options, including hospice.including hospice.

HealthcareHealthcare--proxy, her daughter, feels that proxy, her daughter, feels that hospice is the most appropriate and would hospice is the most appropriate and would support her mothersupport her mother’’s previously expressed s previously expressed wishes.wishes.

History of the Dementia History of the Dementia GuidelinesGuidelines

Guidelines NOT criteria for admission to Guidelines NOT criteria for admission to hospice!hospice!

Consensus NOT evidenceConsensus NOT evidence--based!based!

LuchinsLuchins study was completed around the study was completed around the same time as the initial guidelines were same time as the initial guidelines were published in the late 1990spublished in the late 1990s

Evidence Based Medicine for Evidence Based Medicine for Dementia PrognosisDementia Prognosis……What there is What there is

of it!of it!

1997 1997 LuchinsLuchins’’ Study published in Study published in JAGS around the same time as JAGS around the same time as development of Dementia Criteria for development of Dementia Criteria for hospice admission, used FASThospice admission, used FAST

2004 Mitchell Study published in 2004 Mitchell Study published in JAMA JAMA

Functional Assessment Functional Assessment StagingStagingStagesStages

1.1. No difficultiesNo difficulties2.2. Subjective forgetfulnessSubjective forgetfulness3.3. Decreased job functioning and organizational capacityDecreased job functioning and organizational capacity4.4. Difficulty with complex tasks, instrumental Difficulty with complex tasks, instrumental ADLsADLs5.5. Requires supervision with Requires supervision with ADLsADLs6.6. Impaired Impaired ADLsADLs, with incontinence, with incontinence7.7. A. Ability to speak limited to six wordsA. Ability to speak limited to six words

B. Ability to speak limited to single wordB. Ability to speak limited to single wordC. Loss of ambulationC. Loss of ambulation D. Inability to sitD. Inability to sitE. Inability to smileE. Inability to smileF. Inability to hold head upF. Inability to hold head up

Fast Fact and Concept #150: Prognostication in Dementia. Sing Tsai MD and Robert Arnold MD http://www.aahpm.org/cgi-bin/wkcgi/view?status=A%20&search=185&id=659&offset=225&limit=25

LuchinsLuchins’’ StudyStudy

Followed two cohorts separated by time Followed two cohorts separated by time and place and place (N=47)(N=47) of hospice patients for 2 of hospice patients for 2 yearsyears

Of both groups: median survival time of 4 Of both groups: median survival time of 4 months, average of 6.9months, and 37% months, average of 6.9months, and 37% survived longer than 6monthssurvived longer than 6months

Score >7c had mean survival time of Score >7c had mean survival time of 3.2months3.2months

Score <7c had mean survival time of Score <7c had mean survival time of 18months18months

MitchellMitchell’’s Dementia s Dementia Prognosis StudyPrognosis Study

Mortality Risk Index (MRI)Mortality Risk Index (MRI)

Modified specific MDS (minimum data set) Modified specific MDS (minimum data set) used in longused in long--term care facilitiesterm care facilities

Much larger sample sizeMuch larger sample size

More consistent and effective with More consistent and effective with prediction of prognosis of <6monthsprediction of prognosis of <6months

(see handout)(see handout)

Current Hospice Dementia GuidelinesCurrent Hospice Dementia GuidelinesNHPCO guidelines state severity of dementia NHPCO guidelines state severity of dementia (FAST >7a) is appropriate for hospice enrollment,(FAST >7a) is appropriate for hospice enrollment,based on an expected six month or less prognosis, ifbased on an expected six month or less prognosis, ifthe patient also exhibits one or more specific dementiathe patient also exhibits one or more specific dementiarelated corelated co--morbititiesmorbitities within the past 6 monthswithin the past 6 months::

Aspiration pneumoniaAspiration pneumonia

PyelonephritisPyelonephritis

SepticemiaSepticemia

Multiple, progressive stage 3Multiple, progressive stage 3--4 4 decubitus decubitus ulcersulcers

Fever after antibioticsFever after antibiotics

Unable to maintain fluid/caloric intake to sustain lifeUnable to maintain fluid/caloric intake to sustain life

If feeding tube in place, weight loss>10% in 6 months or If feeding tube in place, weight loss>10% in 6 months or serum albumin <2.5gm/dl are helpful indicatorsserum albumin <2.5gm/dl are helpful indicators

Ongoing controversy about dementia Ongoing controversy about dementia and other chronic illnessesand other chronic illnesses

New York Times articleNew York Times article——out living out living hospicehospice

Reimbursement and CMS sending bills Reimbursement and CMS sending bills to hospices to pay back services that to hospices to pay back services that they already reimbursedthey already reimbursed

As hospice providers what are we to As hospice providers what are we to do?do?

Important to DocumentImportant to Document

Downward Trends over the past Downward Trends over the past 6 months6 months--1 year:1 year:Weight Weight Albumin levelsAlbumin levels Intake Intake

Skin integritySkin integrity

Changes in function, behavior and Changes in function, behavior and cognition cognition

““Decline in Health StatusDecline in Health Status”” (non(non--cancer) Hospice Guidelinescancer) Hospice Guidelines

ProgressionProgression of disease as documented by symptoms, signs, of disease as documented by symptoms, signs, and test resultsand test results

DeclineDecline in in KarnofskyKarnofsky Performance Status or Palliative Performance Status or Palliative Performance ScorePerformance Score

Weight loss; decreased Weight loss; decreased anthroporphorphicanthroporphorphic measures (medmeasures (med-- arm circumference, etc.), decreasing albumin or cholesterolarm circumference, etc.), decreasing albumin or cholesterol

Dependence on assistance for 2 or more Dependence on assistance for 2 or more ADLsADLs

DysphagiaDysphagiainadequate nutritional intakeinadequate nutritional intake

Recurrent aspirationRecurrent aspiration

Decline in systolic blood pressure to <90 or progressive Decline in systolic blood pressure to <90 or progressive postural hypotensionpostural hypotension

Increasing ER visits or hospitalizations related to hospice Increasing ER visits or hospitalizations related to hospice primary diagnosisprimary diagnosis

Decline in FAST for dementiaDecline in FAST for dementia

Progressive stage 3Progressive stage 3--4 pressure ulcers in spite of optimal care4 pressure ulcers in spite of optimal care

Case #2: Case #2: Back to Our PatientBack to Our Patient

She is enrolled in home hospice.She is enrolled in home hospice.

She receives home visits from RN 1She receives home visits from RN 1-- 2x/week and agency caregiver for 8 2x/week and agency caregiver for 8 hours/week from hospice.hours/week from hospice.

She is mainly She is mainly bedboundbedbound and is put in a and is put in a reclining chair with reclining chair with hoyerhoyer lift 2lift 2--3x/week.3x/week.

She does not have any pain or symptom She does not have any pain or symptom management issues during this time.management issues during this time.

While on HospiceWhile on Hospice……

She has gained weightShe has gained weight

Her lab values are all within normal limitsHer lab values are all within normal limits

She does not have any skin breakdown She does not have any skin breakdown

She does not have any pain or symptom She does not have any pain or symptom management issuesmanagement issues

She is able to carry on a conversation, She is able to carry on a conversation, possibly using more than 6 wordspossibly using more than 6 words

Should we consider recertifying Should we consider recertifying this patient for the this patient for the

Medicare Hospice Benefit?Medicare Hospice Benefit?

ObjectivesObjectives

To define and describe dementia as a To define and describe dementia as a terminal illnessterminal illness

To apply hospice guidelines for dementia To apply hospice guidelines for dementia for increased identification of eligibilityfor increased identification of eligibility

To assess pain and symptoms of To assess pain and symptoms of discomfort in patients with dementiadiscomfort in patients with dementia

To educate and negotiate with families To educate and negotiate with families about treating pain in patients with about treating pain in patients with dementiadementia

Does he look like he is in pain Does he look like he is in pain or deep thought?or deep thought?

www.shipstononline.org/shipstonblog/

Case #3Case #3

103 year103 year--old hospice patient with old hospice patient with terminal dementia who is actively dying. terminal dementia who is actively dying. She has been on She has been on tramadoltramadol twice daily twice daily with acetaminophen as needed for with acetaminophen as needed for history of osteoarthritishistory of osteoarthritis--type pain and is type pain and is now no longer taking much by mouth.now no longer taking much by mouth.

How do you assess her for pain or How do you assess her for pain or discomfort?discomfort?

Adequate Pain AssessmentAdequate Pain Assessment

Requires repeat comprehensive assessmentsRequires repeat comprehensive assessments

Older adults underOlder adults under--report painreport pain””normal agingnormal aging””

ScalesScales——choose a scale that is appropriate choose a scale that is appropriate based on cognitive and communication abilities based on cognitive and communication abilities of the individual (reof the individual (re--assess using the SAME assess using the SAME scale)scale)

11--1010

FacesFaces

NonNon--verbal assessmentverbal assessment

HadjistavropoulusHadjistavropoulus

T., et al. An Interdisciplinary Expert Consensus Statement on T., et al. An Interdisciplinary Expert Consensus Statement on Assessment of Pain in Older Persons. Assessment of Pain in Older Persons.

Clinical Journal of Pain. January 2007 Supplement. Volume 23 (Clinical Journal of Pain. January 2007 Supplement. Volume 23 (1):S11):S1--43.43.

Assessment in Older AdultsAssessment in Older Adults With or Without Cognitive With or Without Cognitive

ImpairmentImpairmentWhat type of questions would you ask?What type of questions would you ask?

How limited in basic activities?How limited in basic activities?

How is their sleep?How is their sleep?

How is their appetite?How is their appetite?

Can they rate the pain?Can they rate the pain?

How is their mood?How is their mood?

How are their interpersonal interactions?How are their interpersonal interactions?

Any change in mental status?Any change in mental status?

FeldtFeldt’’ss Checklist Nonverbal Checklist Nonverbal Pain Indicators (CNPI)Pain Indicators (CNPI)

At rest AND with movementAt rest AND with movement

Nonverbal vocalizationsNonverbal vocalizations

Facial grimacing and wincingFacial grimacing and wincing

BracingBracing

RubbingRubbing

RestlessnessRestlessness

Vocal complaintsVocal complaints

(see handout)(see handout)

Other Assessment ToolsOther Assessment Tools

MANY SCALES out there!MANY SCALES out there!

PAINPAIN--AD (AlzheimerAD (Alzheimer’’s Disease)s Disease)

Needs special trainingNeeds special training

May be picking up symptoms other than painMay be picking up symptoms other than pain

Discomfort ScaleDiscomfort Scale--DSDS--DAT (Discomfort Scale for DAT (Discomfort Scale for Dementia of AlzheimerDementia of Alzheimer’’s Type)s Type)

Looking more at fever, NOT painLooking more at fever, NOT pain

Why not FLACC?Why not FLACC?

Studies were in nonverbal pediatric patients Studies were in nonverbal pediatric patients (preverbal, recommended for those under 1 years of (preverbal, recommended for those under 1 years of age)age)

ObjectivesObjectives

To define and describe dementia as a To define and describe dementia as a terminal illnessterminal illness

To apply hospice guidelines for dementia To apply hospice guidelines for dementia for increased identification of eligibilityfor increased identification of eligibility

To assess pain and symptoms of To assess pain and symptoms of discomfort in patients with dementiadiscomfort in patients with dementia

To educate and negotiate with families To educate and negotiate with families about treating pain in patients with about treating pain in patients with dementiadementia

Educating the Caregivers and Educating the Caregivers and FamilyFamily

Commonly asked questions:Commonly asked questions:

How can I tell if my loved one is How can I tell if my loved one is in pain?in pain?

What if the pain medication What if the pain medication makes my loved one makes my loved one ““act funnyact funny”” or sleepy or or sleepy or ““kills themkills them””??

What are the clues?What are the clues?

American Geriatric Society Guide for American Geriatric Society Guide for FamilyFamily

Facial expressionsFacial expressions

Verbalizations/vocalizationsVerbalizations/vocalizations

Body movementsBody movements

Behavioral changesBehavioral changes

Mental status changesMental status changes

Case#3 (cont)Case#3 (cont) Back to Our PatientBack to Our Patient

Restless at rest (moving her legs)Restless at rest (moving her legs)

Nonverbal, barely opening her eyesNonverbal, barely opening her eyes

Grimacing with any movement of her bodyGrimacing with any movement of her body

Case#3 (cont)Case#3 (cont)

After negotiating a plan of care with the After negotiating a plan of care with the family, all agreed to started her on liquid family, all agreed to started her on liquid morphine 5mg sublingual twice daily and morphine 5mg sublingual twice daily and more frequently as needed more frequently as needed

SummarySummary To define and describe dementia as a To define and describe dementia as a

terminal illnessterminal illness

To apply hospice guidelines for dementia To apply hospice guidelines for dementia for increased identification of eligibilityfor increased identification of eligibility

To assess pain and symptoms of To assess pain and symptoms of discomfort in patients with dementia discomfort in patients with dementia

To educate and negotiate with families To educate and negotiate with families about treating pain in patient with about treating pain in patient with

dementiadementia

AcknowledgementsAcknowledgements

XandyXandy Wells, RNWells, RNJoseph Straton, MD MSCEJoseph Straton, MD MSCE

Sarah Sarah KaganKagan, PhD RN, PhD RNJennifer Kapo, MDJennifer Kapo, MD

ReferencesReferences

Cotter, VT, et al. Dementia. Geriatric Secrets 3rd Edition. Hanley & Belfus. 2004, pp53. Adapted from Cotter, VT: Forgetfulness. Goolsby, MJ. Nurse Practitioner Secrets. Philadelphia, Hanley & Belfus, 2002, pp64-70.

Mitchell, et al. Estimating Prognosis for Nursing Home Mitchell, et al. Estimating Prognosis for Nursing Home Residents With Advanced Dementia. JAMA. June 2004. 2734Residents With Advanced Dementia. JAMA. June 2004. 2734-- 2740.2740.

LuchinsLuchins, et al. Criteria for Enrolling Dementia Patients in , et al. Criteria for Enrolling Dementia Patients in Hospice. JAGS. Sept 1997. Hospice. JAGS. Sept 1997. VolVol 34. Issue 9.34. Issue 9.

Fast Fact and Concept #150: Prognostication in Dementia. Sing Fast Fact and Concept #150: Prognostication in Dementia. Sing Tsai MD and Robert Arnold MD Tsai MD and Robert Arnold MD www.eperc.org/fastfactwww.eperc.org/fastfact

FeldtFeldt, Karen PhD RN, The Checklist for Nonverbal Pain , Karen PhD RN, The Checklist for Nonverbal Pain Indicators (CNPI). Pain Management in Nursing. Indicators (CNPI). Pain Management in Nursing. VolVol 1, No 1, 1, No 1, March 2000: 13March 2000: 13--21.21.

HadjistavropoulusHadjistavropoulus, Thomas PhD et al. An Interdisciplinary , Thomas PhD et al. An Interdisciplinary Expert Consensus Statement on Assessment of Pain in Older Expert Consensus Statement on Assessment of Pain in Older Adults. Adults. ClinClin J Pain. J Pain. VolVol 23, No 1, January 2007 Supplement.23, No 1, January 2007 Supplement.

The AGS Foundation for Health in Aging. Pain in Dementia: A The AGS Foundation for Health in Aging. Pain in Dementia: A Family Guide to Assessment and Treatment. Family Guide to Assessment and Treatment. www.healthinaging.orgwww.healthinaging.org