General Debility The Palliative Response F. Amos Bailey, M.D

General Debility General Debility The Palliative ResponseThe Palliative Response

F. Amos Bailey, M.D.F. Amos Bailey, M.D.

General DebilityGeneral DebilityDefinitionDefinition

Declining functional status with Declining functional status with

limited prognosislimited prognosis

Condition may include multiple medical Condition may include multiple medical problemsproblems

None of medical conditions necessarily None of medical conditions necessarily

terminal on its ownterminal on its own

Know Signs of Life’s Know Signs of Life’s EndEnd

While no one knows how long anyone will While no one knows how long anyone will live, live,

there are certain signs there are certain signs

that health is very poor and declining that health is very poor and declining

and time could be limitedand time could be limited

Palliative Evaluation of Palliative Evaluation of Suffering in DebilitySuffering in Debility

PhysicalPhysical – Poorly controlled physical symptomsPoorly controlled physical symptoms

(e.g., pain, anorexia, asthenia)(e.g., pain, anorexia, asthenia)

EmotionalEmotional – Distress in the face of physical declineDistress in the face of physical decline

Palliative Evaluation of Palliative Evaluation of Suffering in DebilitySuffering in Debility

Social Social – Distress from need for additional Distress from need for additional

supportive servicessupportive services

Spiritual/ExistentialSpiritual/Existential– Existential angst Existential angst – Feeling of hopelessnessFeeling of hopelessness

Palliative ResponsePalliative ResponseOverviewOverview

Symptom ManagementSymptom Management– Development of plan of care to palliate Development of plan of care to palliate

symptoms symptoms not relieved by disease-modifying treatment not relieved by disease-modifying treatment

Advance Directive DiscussionAdvance Directive Discussion– Document surrogate decision maker(s) Document surrogate decision maker(s) – Educate and guide about treatment preferencesEducate and guide about treatment preferences– Appropriate in any debilitating illnessAppropriate in any debilitating illness

Assess Eligibility for Hospice ReferralAssess Eligibility for Hospice Referral

Truth-Telling to Patient/FamilyTruth-Telling to Patient/Family

PrognosticationPrognosticationValue to Value to

Patient/FamilyPatient/Family

Aids in symptom managementAids in symptom management Allows time to access community resources Allows time to access community resources Fosters preparing and planning care Fosters preparing and planning care Helps avoid lurching from crisis to crisisHelps avoid lurching from crisis to crisis

Determining PrognosisDetermining Prognosis

Can be difficult in individual caseCan be difficult in individual case

““Would I be surprised if patient died Would I be surprised if patient died

in the next 6 months?”in the next 6 months?”

yields a more accurate answer thanyields a more accurate answer than

““Will this patient die in next 6 months?”Will this patient die in next 6 months?”

If you would not be surprised, If you would not be surprised,

assess palliative care needsassess palliative care needs

Language is ImportantLanguage is Important

““Because of the severity of your Because of the severity of your illness, illness,

you and your family are eligible for you and your family are eligible for

the assistance of hospice at home”the assistance of hospice at home”

is preferable tois preferable to

““You have a prognosis of less than six You have a prognosis of less than six months; months;

therefore, I am referring you hospice”therefore, I am referring you hospice”

Example of Example of Life-Limiting Illness Life-Limiting Illness

Combination of diagnoses in 84 year-oldCombination of diagnoses in 84 year-old– Moderately severe dementiaModerately severe dementia– Progressive heart failureProgressive heart failure– Chronic renal diseaseChronic renal disease

Status despite medical managementStatus despite medical management– Unintentional weight loss Unintentional weight loss – Confined to bedConfined to bed

Patient and/or family choose palliationPatient and/or family choose palliation– Relief of symptoms and suffering vs. cureRelief of symptoms and suffering vs. cure

Markers for Poor Markers for Poor Prognosis Prognosis in Debilityin Debility

Disease Progression Disease Progression – Of one or more of underlying diseasesOf one or more of underlying diseases– Although none yet considered terminalAlthough none yet considered terminal

Increased Dependence Increased Dependence

Need for Home Care ServicesNeed for Home Care Services

Markers for Poor Markers for Poor Prognosis Prognosis in Debilityin Debility

Multiple Emergency Room VisitsMultiple Emergency Room Visits Multiple Hospital AdmissionsMultiple Hospital Admissions

are signs thatare signs that

disease-modifying treatment disease-modifying treatment

is inadequate tois inadequate to

Control symptomsControl symptoms Relieve sufferingRelieve suffering Prevent decline in functionPrevent decline in function

Functional Decline Functional Decline Objective MeasuresObjective Measures

Activities of Daily Living (ADL) Activities of Daily Living (ADL)

Development of dependence in at least Development of dependence in at least three ADL’s in the last six months three ADL’s in the last six months – BathingBathing– DressingDressing– FeedingFeeding– TransfersTransfers– ContinenceContinence– Ability to walk unaided to the bathroomAbility to walk unaided to the bathroom


Karnofsky Performance StatusKarnofsky Performance Status– Karnofsky Score 50% or less with declineKarnofsky Score 50% or less with decline

in score over last 6 monthsin score over last 6 months

– KS 70% KS 70% Cares for selfCares for self Unable to carry on normal activity or active Unable to carry on normal activity or active

workwork

– KS 50% KS 50% Requires considerable assistance Requires considerable assistance Requires frequent medical careRequires frequent medical care


Unintentional Weight Loss Unintentional Weight Loss – Greater than or equal to 10% of body Greater than or equal to 10% of body

weightweight– In the last 6 monthsIn the last 6 months

Albumin Albumin – Less than 2.5 mg/dl Less than 2.5 mg/dl – Always combine this measure with other Always combine this measure with other

evidence of declineevidence of decline

Palliative Care Palliative Care ConsultConsult

IndicationsIndications

Unrelieved SufferingUnrelieved Suffering

Functional DeclineFunctional Decline– Any combinationAny combination of measures of decline of measures of decline

or or

markers for poor prognosismarkers for poor prognosis

Consideration of Hospice ReferralConsideration of Hospice Referral

Palliative Care ConsultPalliative Care ConsultValueValue

Symptom ControlSymptom Control– Assessment Assessment – PlanPlan

Treatment PlanningTreatment Planning– Assist to define goals of careAssist to define goals of care– Assist to develop plan that melds Assist to develop plan that melds

symptom management with disease-symptom management with disease-modifying treatmentmodifying treatment

Assist with Advance Care PlanningAssist with Advance Care Planning

Determine eligibility for hospice careDetermine eligibility for hospice care

Palliative Care inPalliative Care inGeneral DebilityGeneral Debility

Consult Often and EarlyConsult Often and Early

Dementia Dementia The Palliative ResponseThe Palliative Response


Dementia Causes Dementia Causes SufferingSuffering

PhysicalPhysical EmotionalEmotional Social Social SpiritualSpiritual

Both the person afflicted with dementia Both the person afflicted with dementia and the person’s family and the person’s family will experience suffering will experience suffering

in any or all of these domainsin any or all of these domains

Dementia Dementia and Palliative Careand Palliative Care

Most patients and families living with Most patients and families living with dementia would benefit from the dementia would benefit from the Palliative Care approach to the Palliative Care approach to the assessment and treatment of their assessment and treatment of their sufferingsuffering

Suffering has multiple domains and is Suffering has multiple domains and is best addressed in an interdisciplinary best addressed in an interdisciplinary processprocess

Dementia Dementia and Hospice Care and Hospice Care

A select subset of all patientsA select subset of all patients

with dementia will qualifywith dementia will qualify

for services through the for services through the

Medicare Hospice BenefitMedicare Hospice Benefit

The Physician’s RoleThe Physician’s Role

Evaluation and diagnosis of dementiaEvaluation and diagnosis of dementia Search for reversible causes (rare)Search for reversible causes (rare) Management of current medical Management of current medical

problemsproblems Sensitive revelation of the diagnosis and Sensitive revelation of the diagnosis and

prognosisprognosis Assist in defining Goals of CareAssist in defining Goals of Care

The Physician’s RoleThe Physician’s RoleMedical ManagementMedical Management

Management of acute, often Management of acute, often recurrent and infectious illnessesrecurrent and infectious illnesses– PneumoniaPneumonia– UTIUTI

Management of co-morbid illnessManagement of co-morbid illness – Treatment may be more difficult, Treatment may be more difficult,

especially in the advanced stages of especially in the advanced stages of dementiadementia

The Physician’s Role The Physician’s Role Late-Stage DementiaLate-Stage Dementia

Evaluation of key markers of late-Evaluation of key markers of late-stage dementiastage dementia– Inability to walk independentlyInability to walk independently– Fewer than six intelligible wordsFewer than six intelligible words– Decline in oral intake and nutritional Decline in oral intake and nutritional

statusstatus– Frequent ER visits and hospital Frequent ER visits and hospital

admissionadmission

Management of late-stage dementiaManagement of late-stage dementia

Transition to hospice careTransition to hospice care

Dementia Dementia Physical SufferingPhysical Suffering

PainPain Pain from complications of dementia is Pain from complications of dementia is

often under-treated due to difficulty often under-treated due to difficulty with self-reportingwith self-reporting

InfectionsInfections Pneumonia Pneumonia

– Aspirations and atelectasis Aspirations and atelectasis UTI UTI

– Diapers and indwelling cathetersDiapers and indwelling catheters

DementiaDementiaPhysical SufferingPhysical Suffering

Decubitis UlcersDecubitis Ulcers

IncontinenceIncontinence ImmobilityImmobility RestraintsRestraints Poor hygienePoor hygiene Decreasing nutritional statusDecreasing nutritional status

Dementia Dementia Physical SufferingPhysical Suffering

AstheniaAsthenia

FallsFalls

Bed or chair confinementBed or chair confinement

Medical interventions and iatrogenic injuryMedical interventions and iatrogenic injury– Nasogastric tubes and PEG tubesNasogastric tubes and PEG tubes– Foley cathetersFoley catheters– IV’sIV’s– Restraints to protect other interventions Restraints to protect other interventions

or to prevent attempts to get upor to prevent attempts to get up

Dementia Dementia Emotional SufferingEmotional Suffering

DepressionDepression

May benefit from treatment with SSRIMay benefit from treatment with SSRI

Cognitive LossCognitive Loss

May benefit from treatment with May benefit from treatment with medications like Aricept in early-to-medications like Aricept in early-to-moderate stagesmoderate stages

May cause unacceptable side effects May cause unacceptable side effects without benefitwithout benefit

Dementia Dementia Emotional SufferingEmotional Suffering

DeliriumDelirium

Wandering and sun-downingWandering and sun-downing Often worsened by even a minor illnessOften worsened by even a minor illness Disturbance of sleep-wake cycle disrupts Disturbance of sleep-wake cycle disrupts

homehome Usually less intense in familiar Usually less intense in familiar

environmentsenvironments

Dementia Dementia Caregiver SufferingCaregiver Suffering

DepressionDepression– Referral for treatmentReferral for treatment

FatigueFatigue– RespiteRespite

AngerAnger– Support groupsSupport groups

GuiltGuilt– Spiritual counsel/ support groupsSpiritual counsel/ support groups

Dementia Dementia Social SufferingSocial Suffering

Loss of independenceLoss of independence Family struggles with role reversalFamily struggles with role reversal Declining health or death of spouse Declining health or death of spouse

complicates carecomplicates care Loss of financial resourcesLoss of financial resources Need to change location of careNeed to change location of care

DementiaDementiaSocial SufferingSocial Suffering

Need to Change Location of Need to Change Location of CareCare

Nursing Home

Assisted Living Facility

Hospice Care

Home

Dementia Dementia Spiritual SufferingSpiritual Suffering

GuiltGuilt AngerAnger Inability to maintain relationship with Inability to maintain relationship with

faith communityfaith community Feelings of abandonment Feelings of abandonment

Advance Care PlanningAdvance Care PlanningIn Early DementiaIn Early Dementia

Patient can help make decisionsPatient can help make decisions

Surrogates for decision-makingSurrogates for decision-making Preferred locations of carePreferred locations of care Feeding tubesFeeding tubes Resuscitation and other aggressive Resuscitation and other aggressive

interventionsinterventions

Advance Care PlanningAdvance Care PlanningAdvanced DementiaAdvanced Dementia

Family and caregivers Family and caregivers

discuss decisionsdiscuss decisions

Transitions to other venues of careTransitions to other venues of care Response to complications and Response to complications and

progression of illnessprogression of illness Feeding tubesFeeding tubes Resuscitation attemptsResuscitation attempts

Prognosis and Care Prognosis and Care NeedsNeeds

Prediction by Fast ScoringPrediction by Fast Scoring

Development of incontinenceDevelopment of incontinence – Usually will require transfer from ALF to Usually will require transfer from ALF to

nursing homenursing home

FAST Score of 6 or 7 FAST Score of 6 or 7 – May predict a less than six-month May predict a less than six-month

survival survival – Qualifies patient for referral to hospiceQualifies patient for referral to hospice


Key Indicators for Limited Key Indicators for Limited PrognosisPrognosis

Loss of ability to ambulate independentlyLoss of ability to ambulate independently Fewer than six intelligible wordsFewer than six intelligible words Declining oral intakeDeclining oral intake


Key Indicators for Limited Key Indicators for Limited Prognosis Prognosis

Markers of advanced dementia Markers of advanced dementia predictpredict– Frequent ER visitsFrequent ER visits– Frequent hospital admissionsFrequent hospital admissions


Key Indicators for Limited Key Indicators for Limited PrognosisPrognosis

Markers should prompt…Markers should prompt…– Discussion with surrogates of limited Discussion with surrogates of limited

prognosisprognosis– Review or development of Advance Care Review or development of Advance Care

PlanPlan– Consideration of hospice referralConsideration of hospice referral

The Palliative Response The Palliative Response Hepatic FailureHepatic Failure


End-Stage Liver End-Stage Liver DiseasesDiseases

MarkersMarkers– Hepatic insufficiency Hepatic insufficiency – CirrhosisCirrhosis

EtiologyEtiology– Can arise from various specific Can arise from various specific

diagnosesdiagnoses SymptomsSymptoms

– Share many of the same symptomsShare many of the same symptoms PrognosisPrognosis

– Share general guidelines for predicting Share general guidelines for predicting prognosisprognosis

Palliative Care Palliative Care ResponseResponseEvaluationEvaluation

Physical Physical – Assess for poorly controlled symptoms Assess for poorly controlled symptoms

(e.g., pain, anorexia, asthenia)(e.g., pain, anorexia, asthenia) EmotionalEmotional

– Distress secondary to physical declineDistress secondary to physical decline Social Social

– Distress secondary to increased Distress secondary to increased debility debility

– Need for additional support servicesNeed for additional support services Existential/Spiritual AngstExistential/Spiritual Angst

– Hopelessness secondary to prognosisHopelessness secondary to prognosis

Palliative Care Palliative Care ResponseResponse

ManagementManagement Symptom ManagementSymptom Management

– Develop plan of care to palliate symptoms Develop plan of care to palliate symptoms not relieved by disease-modifying treatmentnot relieved by disease-modifying treatment

Advance Care PlanningAdvance Care Planning– Discuss choice of surrogate decision-maker(s)Discuss choice of surrogate decision-maker(s)– Inform and guide regarding treatment Inform and guide regarding treatment

preferences preferences – Any patient with end-stage liver disease Any patient with end-stage liver disease

needs to document surrogate(s) and needs to document surrogate(s) and preferencespreferences


Truth Telling and Truth Telling and ReferralReferral

Truth Telling/PrognosticationTruth Telling/Prognostication– Assists with symptom managementAssists with symptom management– Enables access of community resourcesEnables access of community resources– Facilitates preparing and planning care Facilitates preparing and planning care – Prevents lurching from crisis to crisisPrevents lurching from crisis to crisis

Assess Eligibility for Hospice Assess Eligibility for Hospice Care Care

Triggers for Triggers for PrognosticationPrognostication

Multiple Emergency Room visits Multiple Emergency Room visits

Multiple hospital admissionsMultiple hospital admissions

– Typical of patients with hepatic failureTypical of patients with hepatic failure– Indicate poorly controlled symptomsIndicate poorly controlled symptoms

Determining PrognosisDetermining Prognosis

Determining individual prognosis is difficultDetermining individual prognosis is difficult

Would I be surprised if this patient Would I be surprised if this patient died died

in next 6 months?in next 6 months?yields more accurate prognosisyields more accurate prognosis thanthan

Will this patient die in the next six months?Will this patient die in the next six months?

If you would not be surprised, assess palliative If you would not be surprised, assess palliative needsneeds

Sharing PrognosisSharing Prognosis

Important for people to know that Important for people to know that prognosis is limitedprognosis is limited

““While no one knows how long anyone While no one knows how long anyone

will live, there are certain signs that your will live, there are certain signs that your health is very poor and declining and health is very poor and declining and that time could be limited”that time could be limited”

““People are eligible for hospice when People are eligible for hospice when their illness is so severe that they might their illness is so severe that they might die in the next 6 months to a year”die in the next 6 months to a year”


““Because of the severity of your Because of the severity of your disease, you and your family are disease, you and your family are eligible for the assistance of hospice eligible for the assistance of hospice at home”at home”


““You have a prognosis of less than six You have a prognosis of less than six months; therefore, I am referring you to months; therefore, I am referring you to hospice”hospice”

Is Patient a CandidateIs Patient a CandidateFor Liver Transplant?For Liver Transplant?

If YESIf YES

Pursue aggressive treatment goalsPursue aggressive treatment goals

Is Patient a CandidateIs Patient a CandidateFor Liver Transplant?For Liver Transplant?

If NOIf NO

Due to ineligibility or choice Due to ineligibility or choice

Patient and/or family may elect Palliative Patient and/or family may elect Palliative CareCare– After discussion with physiciansAfter discussion with physicians– Direct Goals of Care and treatment to Direct Goals of Care and treatment to

relief of symptoms and suffering rather relief of symptoms and suffering rather than to cure of underlying diseasesthan to cure of underlying diseases

Markers for Poor Markers for Poor PrognosisPrognosis

Synthetic Function Synthetic Function ImpairmentImpairment

Severe synthetic function impairmentSevere synthetic function impairment – Serum Albumin less than 2.5gm/dlSerum Albumin less than 2.5gm/dl– Prolonged INR greater than 2.0Prolonged INR greater than 2.0

Indications to assess improvementIndications to assess improvement– Acute illness resolvesAcute illness resolves– Abstinence from alcoholAbstinence from alcohol


Clinical Indicators Clinical Indicators

Refractory AscitesRefractory Ascites– Lack of response to diuretics Lack of response to diuretics – Non-adherence to treatmentNon-adherence to treatment

Spontaneous Bacterial PeritonitisSpontaneous Bacterial Peritonitis

Hepatorenal SyndromeHepatorenal Syndrome


Clinical Indicators Clinical Indicators Recurrent Hepatic EncephalopathyRecurrent Hepatic Encephalopathy

– Decreased response to treatmentDecreased response to treatment– Non-adherence to treatmentNon-adherence to treatment

Recurrent Variceal BleedingRecurrent Variceal Bleeding– Despite medical intervention and Despite medical intervention and

managementmanagement

Other Markers forOther Markers for Poor Prognosis Poor Prognosis

Unintentional weight loss Unintentional weight loss – Greater than or equal to 10% of body Greater than or equal to 10% of body

weightweight– In the last 6 monthsIn the last 6 months

Muscle wasting/reduced strengthMuscle wasting/reduced strength

Continued alcohol useContinued alcohol use

HBsAg positivityHBsAg positivity

Multiple ER and hospital admissionsMultiple ER and hospital admissions

ConsiderConsiderPalliative Care ConsultPalliative Care Consult

Any combinationAny combination of markers for poor of markers for poor prognosisprognosis

Not necessary for patient to have all Not necessary for patient to have all signs or symptomssigns or symptoms

Palliative Care ConsultPalliative Care Consult

Unrelieved SufferingUnrelieved Suffering– Assess symptom controlAssess symptom control– Advise about Goals of CareAdvise about Goals of Care– Assist to meld symptom management Assist to meld symptom management

with disease- modifying treatmentwith disease- modifying treatment

Advance Care PlanningAdvance Care Planning

Evaluate for Hospice ReferralEvaluate for Hospice Referral– Help establish life-expectancyHelp establish life-expectancy– Determine eligibility for hospice careDetermine eligibility for hospice care

Palliative Care andPalliative Care andProgressive Liver Progressive Liver

DiseaseDisease


Pulmonary Disease Pulmonary Disease The Palliative ResponseThe Palliative Response


Suffering in Pulmonary Suffering in Pulmonary DiseaseDisease

Patients with advanced pulmonary Patients with advanced pulmonary diseasedisease

often suffer extensively despite often suffer extensively despite

maximum disease-modifying therapiesmaximum disease-modifying therapies

Palliative Care Palliative Care EvaluationEvaluation

Pulmonary DiseasePulmonary DiseasePhysical DiscomfortPhysical Discomfort

Poorly controlled symptomsPoorly controlled symptoms

(e.g., dyspnea and asthenia)(e.g., dyspnea and asthenia)

Emotional DistressEmotional Distress

Secondary to physical declineSecondary to physical decline

Palliative Care Palliative Care EvaluationEvaluation

Pulmonary DiseasePulmonary DiseaseSocial DistressSocial Distress

Secondary to debility and need for Secondary to debility and need for additional support and servicesadditional support and services

Spiritual DistressSpiritual Distress

Existential angst and hopelessnessExistential angst and hopelessness


Manage SymptomsManage Symptoms Develop plan to palliate symptoms unrelieved Develop plan to palliate symptoms unrelieved

by disease-modifying treatmentby disease-modifying treatment

Discuss Advance DirectiveDiscuss Advance Directive Discuss choice of surrogate decision maker(s)Discuss choice of surrogate decision maker(s) Discuss treatment preferences Discuss treatment preferences Appropriate in any advanced pulmonary Appropriate in any advanced pulmonary

diseasedisease

Evaluate for Hospice ReferralEvaluate for Hospice Referral


PrognosticationPrognosticationValue of Truth TellingValue of Truth Telling

Assists with symptom managementAssists with symptom management Enables patient and family to access Enables patient and family to access

community resources community resources Fosters preparing and planning careFosters preparing and planning care Helps family avoid lurching from crisis to Helps family avoid lurching from crisis to

crisiscrisis

Aids to Aids to PrognosticationPrognostication

Determining individual prognosis is difficultDetermining individual prognosis is difficult

Would I be surprised if this patient Would I be surprised if this patient died Idied Iin the next six months?in the next six months?

yields more accurate answer thanyields more accurate answer than

Will this patient die in the next six months?Will this patient die in the next six months?

If you would not be surprised, If you would not be surprised, assess for palliative care needsassess for palliative care needs


““Because of the severity of your lung Because of the severity of your lung disease, you and your family are disease, you and your family are eligible for the assistance of hospice eligible for the assistance of hospice at home”at home”


““You have a prognosis of less than six You have a prognosis of less than six months. Therefore, I am referring you to months. Therefore, I am referring you to hospice”hospice”


““While no one knows how long anyone While no one knows how long anyone will live, there are certain signs that will live, there are certain signs that your lung disease is very severe and your lung disease is very severe and that time could be limited”that time could be limited”

““People are eligible for hospice when People are eligible for hospice when their illness is so severe that they might their illness is so severe that they might die in the next six months to a year”die in the next six months to a year”


Disabling DyspneaDisabling Dyspnea Dyspnea at rest despite maximum medical Dyspnea at rest despite maximum medical

managementmanagement

Patients may be very limited Patients may be very limited

(e.g., bed-to-chair or mostly bed confined)(e.g., bed-to-chair or mostly bed confined)

Other problems often presentOther problems often present

(e.g., cough, profound fatigue)(e.g., cough, profound fatigue)

Consider co-morbid illnessesConsider co-morbid illnesses

Poor Prognosis Poor Prognosis Functional Markers Functional Markers

Multiple emergency room visitsMultiple emergency room visits


Declining functional status Declining functional status (based on assessment of Activities of Daily (based on assessment of Activities of Daily Living)Living)

Inability to live independentlyInability to live independently(necessitating move to live with family or in a (necessitating move to live with family or in a residential care facility)residential care facility)

Poor Prognosis Poor Prognosis 5 Key Clinical Markers 5 Key Clinical Markers

1. Unintentional Weight Loss1. Unintentional Weight Loss

Greater than 10% of body weight Greater than 10% of body weight Over six monthsOver six months

Poor Prognosis Poor Prognosis 5 Key Clinical Markers5 Key Clinical Markers

2. Resting Tachycardia2. Resting Tachycardia

Resting heart beat >100/ minuteResting heart beat >100/ minute Unrelated to recent breathing treatmentUnrelated to recent breathing treatment Unrelated to atrial fibrillation Unrelated to atrial fibrillation Unrelated to MATUnrelated to MAT


3. Hypoxemia at Rest3. Hypoxemia at Rest

Despite supplemental oxygen, such as Despite supplemental oxygen, such as 2l NP, 2l NP, pO2 less than or equal to pO2 less than or equal to 55mm HG55mm HG

4. Hypercapnia 4. Hypercapnia

pCO2 greater than or equal to 50mm HGpCO2 greater than or equal to 50mm HG


5. Evidence of Right Heart 5. Evidence of Right Heart FailureFailure

Physical Signs of RHFPhysical Signs of RHF EchocardiogramEchocardiogram ElectrocardiogramElectrocardiogram

Palliative Care Palliative Care EvaluationEvaluationIndicationIndication

Any combination of markers of poor Any combination of markers of poor prognosis warrants referral for prognosis warrants referral for Palliative Care evaluation Palliative Care evaluation

Not necessary or appropriate for Not necessary or appropriate for

patient to exhibit all markers to patient to exhibit all markers to warrant palliative evaluationwarrant palliative evaluation

Palliative Care ConsultPalliative Care ConsultReview of ContributionReview of Contribution

Unrelieved SufferingUnrelieved Suffering– Assess symptom controlAssess symptom control– Assist to develop treatment plan that Assist to develop treatment plan that

melds symptom management with melds symptom management with disease-modifying treatmentdisease-modifying treatment

Goals of CareGoals of Care

Advance Care PlanningAdvance Care Planning

Assess for Hospice ReferralAssess for Hospice Referral

Palliative Care andPalliative Care andPulmonary DiseasePulmonary Disease


Renal DiseaseRenal DiseaseThe Palliative ResponseThe Palliative Response


Suffering in Suffering in End-Stage Renal End-Stage Renal

DiseaseDisease

Patients with End-Stage Renal DiseasePatients with End-Stage Renal Disease

often suffer extensively often suffer extensively

despite despite

maximum disease-modifying maximum disease-modifying therapiestherapies

Dialysis TherapyDialysis Therapy

Some patients Some patients declinedecline

Some patients Some patients inappropriateinappropriate – Co-morbid diseases Co-morbid diseases – Quality-of-life issuesQuality-of-life issues

Some patients decide to Some patients decide to discontinuediscontinue– Progressive decline Progressive decline – Co-morbid illness Co-morbid illness – Appropriate for hospice referralAppropriate for hospice referral

Palliative EvaluationPalliative Evaluation

PhysicalPhysicalUncontrolled symptomsUncontrolled symptoms

(e.g., Dyspnea, Asthenia, Delirium)(e.g., Dyspnea, Asthenia, Delirium)

EmotionalEmotional

Distress in the face of physical declineDistress in the face of physical decline

Palliative EvaluationPalliative Evaluation

SocialSocial

Distress from increased debility and Distress from increased debility and need for additional servicesneed for additional services

SpiritualSpiritual

Existential angst and hopelessnessExistential angst and hopelessness

The Palliative The Palliative ResponseResponse

Symptom ManagementSymptom Management– Develop plan of care to palliate symptoms Develop plan of care to palliate symptoms

not relieved by disease-modifying treatmentnot relieved by disease-modifying treatment

Advance Directive DiscussionAdvance Directive Discussion– Discuss surrogate decision maker(s) Discuss surrogate decision maker(s) – Discuss treatment preferencesDiscuss treatment preferences– Document result of discussionDocument result of discussion

Hospice ReferralHospice Referral for advanced patients for advanced patients

Truth-TellingTruth-Telling

Value of Truth Telling Value of Truth Telling and Prognosticationand Prognostication

Assists with symptom managementAssists with symptom management Enables accessing community resourcesEnables accessing community resources Fosters preparing and planning careFosters preparing and planning care Helps avoid lurching from crisis to crisisHelps avoid lurching from crisis to crisis

Establishing PrognosisEstablishing Prognosis

Ask…Ask…

Would you be surprised if this Would you be surprised if this patient patient died in next six months?died in next six months?

Yields more accurate prognosis than…Yields more accurate prognosis than…

Will this patient die in the next six Will this patient die in the next six months?months?

If you would not be surprised…If you would not be surprised…

assess for palliative care needsassess for palliative care needs

Sharing PrognosisSharing Prognosis

Important for people to know Important for people to know that prognosis is limitedthat prognosis is limited

““Because of the severity of your kidney Because of the severity of your kidney disease, you and your family are eligible disease, you and your family are eligible for the assistance of hospice at home”for the assistance of hospice at home”

preferable to…preferable to… ““You have a prognosis of less than six You have a prognosis of less than six

months; therefore, I am referring you to months; therefore, I am referring you to hospice”hospice”


““While no one knows how long anyone While no one knows how long anyone will live, there are certain signs that will live, there are certain signs that your kidney disease is very severe and your kidney disease is very severe and that time could be limited”that time could be limited”

““People are eligible for hospice when People are eligible for hospice when their illness is so severe that they might their illness is so severe that they might die in the next six months to a year”die in the next six months to a year”


Co-Morbid IllnessesCo-Morbid Illnesses

StrokesStrokes

Advanced DementiaAdvanced Dementia

Congestive Heart Failure Congestive Heart Failure despite control of fluid overloaddespite control of fluid overload


Co-Morbid IllnessesCo-Morbid Illnesses

Chronic Lung Disease Chronic Lung Disease Oxygen Dependence Oxygen Dependence

Diabetes Mellitus Diabetes Mellitus Manifestations of long-term Manifestations of long-term

complicationscomplications

Poor PrognosisPoor PrognosisKey Clinical MarkersKey Clinical Markers

Unintentional Weight LossUnintentional Weight Loss– Greater than 10% of body weight over Greater than 10% of body weight over

six months six months

Resting TachycardiaResting Tachycardia– Resting heartbeat greater than Resting heartbeat greater than

100/minute100/minute– Unrelated to recent breathing Unrelated to recent breathing

treatment, atrial fibrillation or MATtreatment, atrial fibrillation or MAT

Poor PrognosisPoor PrognosisKey Clinical MarkersKey Clinical Markers

Poor Prognostic Markers Poor Prognostic Markers

for patient who will not be receiving for patient who will not be receiving dialysisdialysis

Serum Creatinine >8mg/dlSerum Creatinine >8mg/dl Creatinine Clearance <10cc/minuteCreatinine Clearance <10cc/minute

Poor Prognosis Poor Prognosis Functional MarkersFunctional Markers

Multiple emergency room visitsMultiple emergency room visits


Declining functional status based on Declining functional status based on assessment of Activities of Daily Livingassessment of Activities of Daily Living

Need to move from living independently Need to move from living independently to living with family or in a residential to living with family or in a residential care facilitycare facility

Palliative Response to Palliative Response to Markers for Poor Markers for Poor

PrognosisPrognosis Any combination of markers for poor Any combination of markers for poor

prognosis might prompt evaluation by prognosis might prompt evaluation by palliative care for unrelieved suffering or palliative care for unrelieved suffering or for hospice referralfor hospice referral

It is not necessary or appropriate for a It is not necessary or appropriate for a patient to exhibit all of the markers patient to exhibit all of the markers before being evaluated by palliative carebefore being evaluated by palliative care

Palliative Care ConsultPalliative Care Consult

Symptom ControlSymptom Control

Treatment Plan Treatment Plan Assist to develop plan that melds Assist to develop plan that melds symptom management with disease-symptom management with disease-modifying treatmentmodifying treatment

Goals of Care Goals of Care Advance Care PlanningAdvance Care Planning Assess for Hospice Care Assess for Hospice Care

Palliative CarePalliative CareEnd-Stage Renal End-Stage Renal

DiseaseDisease


Congestive Heart Congestive Heart FailureFailure

The Palliative ResponseThe Palliative Response


Dying from Heart Dying from Heart Disease Disease

Physical Suffering at Life’s Physical Suffering at Life’s EndEnd

PAINPAIN was one of was one of the most common the most common problemsproblems

78% report pain in 78% report pain in the last yearthe last year

63% report pain the 63% report pain the last weeklast week

50% say pain is 50% say pain is ““very distressing”very distressing”

DYSPNEADYSPNEA was the was the second most second most common problemcommon problem

61% report dyspnea 61% report dyspnea in the last yearin the last year

51% report dyspnea 51% report dyspnea in the last weekin the last week

43% say dyspnea is 43% say dyspnea is “very distressing”“very distressing”

McCarthy et. al., 1996

Dying from Heart Dying from Heart Disease Disease

Physical Suffering at Life’s Physical Suffering at Life’s EndEnd

Loss of appetite 43%Loss of appetite 43%

Nausea/Vomiting 32%Nausea/Vomiting 32%

Constipation 37%Constipation 37%

Fecal incontinence 16%Fecal incontinence 16%


Dying from Heart Dying from Heart DiseaseDisease

Emotional Suffering at Life’s Emotional Suffering at Life’s EndEnd

Low mood Low mood 59%59% Sleeplessness Sleeplessness 45% 45% Anxiety Anxiety 30%30% Mental confusionMental confusion

– Under age 55Under age 55 27%27%– Over age 85Over age 85 42%42%– Much more distressing for Much more distressing for

younger than older patientsyounger than older patients


Social and Spiritual Social and Spiritual Suffering at Life’s EndSuffering at Life’s End

Dying in setting other than home (70%)Dying in setting other than home (70%) Declining functional statusDeclining functional status Social isolationSocial isolation Depletion of financial resourcesDepletion of financial resources Caregiver fatigueCaregiver fatigue Questions of meaning – Why?Questions of meaning – Why?

Predictors of PoorPredictors of PoorQuality of Life (QOL)Quality of Life (QOL)

Loss of functionLoss of function Low moodLow mood Mental confusionMental confusion Incontinence Incontinence Pain/dyspnea contribute but less predictivePain/dyspnea contribute but less predictive

All forms of suffering reduce QOLAll forms of suffering reduce QOLFewer than 1/2 report good QOL at Life’s EndFewer than 1/2 report good QOL at Life’s End

Status and Status and Symptoms Symptoms

at Life’s Endat Life’s End 55% conscious in the last three days55% conscious in the last three days 4 of 10 had severe pain most of the time4 of 10 had severe pain most of the time 8 of 10 had severe asthenia8 of 10 had severe asthenia 1 of 4 had severe dysphoria1 of 4 had severe dysphoria 2 of 3 had one or more difficult-to-tolerate 2 of 3 had one or more difficult-to-tolerate

physical or emotional symptomsphysical or emotional symptoms

SUPPORT Study Lynn et. al., 1997

Interventions at Life’s Interventions at Life’s EndEnd

11% - final resuscitation event11% - final resuscitation event 25% - ventilator support25% - ventilator support 40% - feeding tube40% - feeding tube 59% - would have preferred comfort care59% - would have preferred comfort care

(as reported by family)(as reported by family) 10% - some aspect of care was contrary to 10% - some aspect of care was contrary to

stated wishesstated wishes

SUPPORT Study Lynn et. al., 1997

Congestive Heart Congestive Heart Failure Failure Survival StudySurvival Study

Time in MonthsTime in Months Survival %Survival %

11 81% 81%

33 75% 75%

66 70% 70%

1212 62% 62%

1818 57% 57%

Poor Prognostic SignsPoor Prognostic Signs

Lower Systolic BP - Elevated Creatinine - Lower Systolic BP - Elevated Creatinine -

Persistent RalesPersistent Rales Cowie et. al., 2000

Six-Month Survival Six-Month Survival Rates Congestive Rates Congestive

Heart FailureHeart Failure

Ejection fraction <20%Ejection fraction <20% 73%73% ArrhythmiaArrhythmia 75%75% Inclusion to hospiceInclusion to hospice

– Broad 473Broad 473 75%75%– Intermediate 170Intermediate 170 69%69%– Narrow 12Narrow 12 58%58%

Lynn et. al, 1999

Congestive Heart FailureCongestive Heart FailureResearch ResultsResearch Results

High Death Risk/Low Prognostic AccuracyHigh Death Risk/Low Prognostic AccuracySurvival can be unpredictably very shortSurvival can be unpredictably very short

Impossible to predict accurately which Impossible to predict accurately which congestive heart patients will die in given congestive heart patients will die in given periodperiod

Many patients die before judged “eligible” for Many patients die before judged “eligible” for hospice care by their predicted life hospice care by their predicted life expectancyexpectancy

Thus, many patients amenable to palliative Thus, many patients amenable to palliative care instead experience unrelieved sufferingcare instead experience unrelieved sufferingSUPPORT Study

Lynn et. al, 1999

Congestive Heart Congestive Heart FailureFailure

The Palliative The Palliative ResponseResponse Symptom management Symptom management

(vs. disease modification)(vs. disease modification) Psychological, emotional and bereavement Psychological, emotional and bereavement

supportsupport Care of the family unitCare of the family unit Access to community resourcesAccess to community resources Interdisciplinary assistance Interdisciplinary assistance Home servicesHome services Advance Care PlanningAdvance Care Planning

Doctor-Patient Doctor-Patient Communication About Communication About

Death and DyingDeath and DyingEvidence of Communication DifficultyEvidence of Communication Difficulty

MMany patients realized were dying, but without any input from physician about this reality

Patients queried researchers about condition, prognosis and likely manner of death

Etiology of Communication DifficultyEtiology of Communication Difficulty Patients – Confusion, memory lossPatients – Confusion, memory loss Physicians – Discomfort/unwillingness to Physicians – Discomfort/unwillingness to

provide informationprovide information Rogers & Addington-Hall, 2000

Optimum Optimum Medical TreatmentMedical Treatment

Ace inhibitors Digoxin Loop diuretics Beta-blockers Spironolactone Anticoagulant therapy Nitrates

BreathlessnessBreathlessness

KEEP DRY, reposition, reassure, provide a KEEP DRY, reposition, reassure, provide a fanfan

OxygenOxygen Morphine or another opioid in short-acting Morphine or another opioid in short-acting

form form Ms 10mg/5ml 5-10mg q1-2 hour for dyspneaMs 10mg/5ml 5-10mg q1-2 hour for dyspnea Mild anxiolytic Mild anxiolytic

LLorazepam 0.5-1mg q2-4 hoursorazepam 0.5-1mg q2-4 hours

Relief of dyspnea is more important than Relief of dyspnea is more important than determining the creatinine level determining the creatinine level

Diuretic Treatment is Diuretic Treatment is Key Key

in Breathlessnessin BreathlessnessGoals Goals

Minimal rales and patient comfortMinimal rales and patient comfort Weight controlWeight control

– Weigh and chart dailyWeigh and chart daily– Increase: increase diuretics/reduce fluid Increase: increase diuretics/reduce fluid

intakeintake– Decrease: risk of hypotension or renal Decrease: risk of hypotension or renal

failure secondary to overshootingfailure secondary to overshooting

Possible Unavoidable Side EffectsPossible Unavoidable Side Effects HypotensionHypotension Elevated creatinine and BUNElevated creatinine and BUN Dry mouthDry mouth

Home Nursing RoleHome Nursing Role

Assist with medicinesAssist with medicines Assist with dietAssist with diet Assist with memory Assist with memory Assess patient safety and comfortAssess patient safety and comfort

– Bed or recliner with raised head? Bed or recliner with raised head? – Easy access to toiletEasy access to toilet– Family supportFamily support– Need for additional assistanceNeed for additional assistance

(home health aides, homemaker, meals)(home health aides, homemaker, meals)

Fatigue and Fatigue and LightheadednessLightheadedness

Reassess drug therapyReassess drug therapy Consider depressionConsider depression Recommend energy conservationRecommend energy conservation Check for postural hypotensionCheck for postural hypotension If dyspnea is controlled, may be able to If dyspnea is controlled, may be able to

titrate fluid intake to increase titrate fluid intake to increase intravascular volume with oral hydrationintravascular volume with oral hydration

Nausea and AnorexiaNausea and Anorexia

EtiologyEtiology Complications of drug therapyComplications of drug therapy Constipation secondary to medicines or Constipation secondary to medicines or

decreased fluid intakedecreased fluid intake

InterventionsInterventions Frequent small meals to accommodate Frequent small meals to accommodate

fatiguefatigue Appetite stimulant (e.g., alcohol or decadron)Appetite stimulant (e.g., alcohol or decadron) Metoclopramide for decreased emptying Metoclopramide for decreased emptying

EdemaEdema

InterventionsInterventions Diuretic therapyDiuretic therapy Fluid restrictionFluid restriction ElevationElevation Salt restrictionSalt restriction ReassuranceReassurance

Consider EtiologyConsider Etiology AnasarcaAnasarca Decreased albumin levelDecreased albumin level

Emotional SufferingEmotional Suffering

ManifestationsManifestations DeliriumDelirium DepressionDepression AnxietyAnxiety

InterventionsInterventions Medical management Medical management Supportive home environment Supportive home environment Openly address fears to help regain Openly address fears to help regain

sense of controlsense of control

Social SufferingSocial Suffering

EtiologyEtiology Loss of incomeLoss of income Cost of treatmentCost of treatment Difficulty with transportation and errandsDifficulty with transportation and errands Necessity for residential care vs. home Necessity for residential care vs. home

carecare Time limits and lack of defined prognosisTime limits and lack of defined prognosis

InterventionsInterventions Access community resourcesAccess community resources

Spiritual SufferingSpiritual Suffering

EtiologyEtiology Uncertainty about timing/manner of deathUncertainty about timing/manner of death Guilt and angerGuilt and anger Sense of isolation and abandonment due Sense of isolation and abandonment due

to fatigue of caregivers and other to fatigue of caregivers and other supporterssupporters

InterventionIntervention Improve symptom control Improve symptom control Reconnect with communityReconnect with community

Programmatic ResponseProgrammatic Response

Hospice Care in advanced and difficult Hospice Care in advanced and difficult cases for intensive supportcases for intensive support

Congestive Heart Home Health SpecialistCongestive Heart Home Health Specialist

(offered by some insurances)(offered by some insurances)

Medicaring Demonstration ProjectMedicaring Demonstration Project

(supportive services for CHF and COPD)(supportive services for CHF and COPD)

HIV/AIDS HIV/AIDS and Palliative Careand Palliative Care


Changing Natural Changing Natural HistoryHistory

of HIV/AIDSof HIV/AIDSEarly 1980’s Early 1980’s

Clusters of PCP Pneumonia Clusters of PCP Pneumonia

Identification of high-risk groups in USIdentification of high-risk groups in US– Gay menGay men– Injecting drug usersInjecting drug users– HemophiliacsHemophiliacs


of HIV/AIDSof HIV/AIDSMid 1980’sMid 1980’s

Identification of HIV as the causative Identification of HIV as the causative agentagent

Screening and testing of at-risk groupsScreening and testing of at-risk groups Identification of the routes of infectionIdentification of the routes of infection Development of education/prevention Development of education/prevention

campaignscampaigns Mounting numbers of deaths from AIDSMounting numbers of deaths from AIDS



Understanding of natural history of Understanding of natural history of infectioninfection

Acute infection (usually not recognized)Acute infection (usually not recognized) Long period of time during which infected Long period of time during which infected

person is asymptotic (infectious)person is asymptotic (infectious) ARC (AIDS Related Complex)ARC (AIDS Related Complex) Opportunistic infection and/or certain types Opportunistic infection and/or certain types

of cancers leading to deathof cancers leading to death



Understanding of the natural history of Understanding of the natural history of infectioninfection

Lose about 100 CD4’s/yearLose about 100 CD4’s/year Relationship to CD4 lymphocyte depletionRelationship to CD4 lymphocyte depletion

– ~ 500-1000/dl Normal~ 500-1000/dl Normal– 200-500/dl ARC200-500/dl ARC– <200/dl PCP<200/dl PCP– <100/dl Other opportunistic <100/dl Other opportunistic

infections (OI) and infections (OI) and deathdeath


of HIV/AIDSof HIV/AIDSLate 1980’s Late 1980’s

TreatmentTreatment

TMP/Sulfa for PCPTMP/Sulfa for PCP AZT trialAZT trial DDI trial DDI trial People living longer develop other OI’sPeople living longer develop other OI’s

– CMVCMV– MAIMAI


of HIV/AIDSof HIV/AIDSEarly 1990’sEarly 1990’s

Recognition that the medicines Recognition that the medicines developed developed

could be toxic and lose effectivenesscould be toxic and lose effectiveness

Development of other NRTI’sDevelopment of other NRTI’s Development of NNRTI’sDevelopment of NNRTI’s HIV/AIDS hospice programs in larger citiesHIV/AIDS hospice programs in larger cities

– San FranciscoSan Francisco– New York New York – ChicagoChicago



Beginning to appreciate the crisis Beginning to appreciate the crisis developing in Sub-Saharan Africa, Asia and developing in Sub-Saharan Africa, Asia and other developing countriesother developing countries

Hospice programs in smaller communities Hospice programs in smaller communities begin to have more referrals as local begin to have more referrals as local infection occurs and persons living with infection occurs and persons living with AIDS (PWA) return to live with their familiesAIDS (PWA) return to live with their families



Finding Expression for the CrisisFinding Expression for the Crisis

AIDS QuiltAIDS Quilt Red RibbonsRed Ribbons Angels in AmericaAngels in America (play) (play) RENTRENT (musical) (musical) The Band Played OnThe Band Played On (book and movie) (book and movie) PhiladelphiaPhiladelphia (movie) (movie)



New TreatmentsNew Treatments

PI Protease Inhibitors introducedPI Protease Inhibitors introduced HAART (Highly Active Anti-Retroviral HAART (Highly Active Anti-Retroviral

Therapy) 2NRTIs and a PITherapy) 2NRTIs and a PI People with AIDS on their death beds got People with AIDS on their death beds got

up and walked out of hospicesup and walked out of hospices Irrational exuberance (possible cure) Irrational exuberance (possible cure)


of HIV/AIDSof HIV/AIDSLate 1990’s to Present Late 1990’s to Present

PI Protease Inhibitors widely used in both PI Protease Inhibitors widely used in both newly infected and established patientsnewly infected and established patients

HIV/AID specialty hospice programs closeHIV/AID specialty hospice programs close New side effects and toxicity identifiedNew side effects and toxicity identified COST of treatment over $1000 a monthCOST of treatment over $1000 a month Patients begin to fail treatment because Patients begin to fail treatment because

of the development of resistanceof the development of resistance


of HIV/AIDSof HIV/AIDSLate 1990’ to PresentLate 1990’ to Present

Infection Escalates in Developing Infection Escalates in Developing CountriesCountries

HIV/AIDS infection rate in some South African HIV/AIDS infection rate in some South African countries reaches 25% of the populationcountries reaches 25% of the population

Protest about the inability to afford or access Protest about the inability to afford or access treatment in developing countriestreatment in developing countries

Development of HIV/AIDS hospice care in Development of HIV/AIDS hospice care in developing worlddeveloping world


of HIV/AIDSof HIV/AIDSLate 1990’s to PresentLate 1990’s to Present

View HIV/AIDS in USA as chronic illness View HIV/AIDS in USA as chronic illness such as DM or HTNsuch as DM or HTN

Hospice referral of patients with Hospice referral of patients with HIV/AIDS resumesHIV/AIDS resumes

The future…..The future…..

The Experience of The Experience of Dying from HIV/AIDSDying from HIV/AIDS

PhysicalPhysical EmotionalEmotional

SufferingSuffering

SocialSocial SpiritualSpiritual

Palliative CarePalliative Care

““Palliative care seeks to prevent, relieve, Palliative care seeks to prevent, relieve, reduce or soothe the symptoms of disease reduce or soothe the symptoms of disease or disorder without effecting a cure…or disorder without effecting a cure…

Palliative care in this broad sense is not Palliative care in this broad sense is not restricted to those who are dying or those restricted to those who are dying or those enrolled in hospice programs…enrolled in hospice programs…

It attends closely to the emotional, It attends closely to the emotional, spiritual, and practical needs and goals of spiritual, and practical needs and goals of patients and those close to them.”patients and those close to them.”

Institute of Medicine 1998Institute of Medicine 1998

Palliative CarePalliative Care

Palliative Care

HospiceTherapy with Curative Intent

Symptom Rx Supportive Care

Bereavement Care

Presentation 6m Death

Physical SufferingPhysical Suffering

Opportunistic infectionOpportunistic infection MalignancyMalignancy Treatment toxicityTreatment toxicity Organ FailureOrgan Failure

Physical SufferingPhysical SufferingOpportunistic InfectionOpportunistic Infection

Opportunistic infection may developOpportunistic infection may developwhen immune competency when immune competency cannot be restored due tocannot be restored due to

Lack of response (resistance)Lack of response (resistance) Non-compliance with treatmentNon-compliance with treatment Lack of availability of treatment Lack of availability of treatment

(developing countries)(developing countries)

Physical SufferingPhysical SufferingOpportunistic InfectionOpportunistic Infection

Opportunistic infection may lead toOpportunistic infection may lead todeath within 12 months of onsetdeath within 12 months of onset

MAC 74%MAC 74% CMV 70%CMV 70% Toxoplasmosis 73%Toxoplasmosis 73% CMV and MAC 99%CMV and MAC 99% CMV and wasting 88%CMV and wasting 88%

Physical SufferingPhysical SufferingComplicationsComplications

Complications when immune-Complications when immune-competencycompetency

cannot be restored may lead to deathcannot be restored may lead to death

within 12 months of onsetwithin 12 months of onset

Progressive multifocal Progressive multifocal

leukoencephalopathy 100%leukoencephalopathy 100% Dementia 79%Dementia 79% Cancers such as B cell lymphoma, primary Cancers such as B cell lymphoma, primary

CNS lymphoma and cervical cancer in womenCNS lymphoma and cervical cancer in women

Physical SufferingPhysical SufferingComplications of Complications of

TreatmentTreatment

Diabetes mellitusDiabetes mellitus PancreatitisPancreatitis Lipid dystrophy with stroke or heart Lipid dystrophy with stroke or heart

diseasedisease Hepatic injuryHepatic injury Bone marrow suppressionBone marrow suppression

Physical SufferingPhysical SufferingComplications & Organ Complications & Organ

FailuresFailures

Renal failureRenal failure Liver failure with Hepatitis B and/or CLiver failure with Hepatitis B and/or C CardiomyopathyCardiomyopathy Co-morbid risk of injury from drug and Co-morbid risk of injury from drug and

alcohol abusealcohol abuse

Palliative CarePalliative Careand Hospice Referralsand Hospice Referrals

Indications for ReferralIndications for Referral

HAART therapy ineffectiveHAART therapy ineffective HAART therapy not tolerated wellHAART therapy not tolerated well PWA declines treatment for HIVPWA declines treatment for HIV Complications such as dementia, PMLComplications such as dementia, PML HIV may be secondary diagnosis with the HIV may be secondary diagnosis with the

primary diagnosis being hepatic failure primary diagnosis being hepatic failure or canceror cancer

Palliative and Hospice Palliative and Hospice CareCare

Physical symptoms may be similar to those Physical symptoms may be similar to those of other patients referred to hospice of other patients referred to hospice although may have larger numberalthough may have larger number

Special issuesSpecial issues– Pain control in patients with history of Pain control in patients with history of

past or current drug usepast or current drug use– Decisions about continuing some OI or Decisions about continuing some OI or

HIV treatmentsHIV treatments– Management of specific OI/HIV problems Management of specific OI/HIV problems

in concert with HIV specialistin concert with HIV specialist

Emotional Suffering Emotional Suffering and HIV/AIDSand HIV/AIDS

Depression and suicideDepression and suicide Cognitive impairment Cognitive impairment

– Dementia or PMLDementia or PML Substance abuseSubstance abuse AnxietyAnxiety Mental illness and homelessnessMental illness and homelessness Gender and sexuality issuesGender and sexuality issues

Social Suffering Social Suffering and HIV/AIDSand HIV/AIDS

Relative youth of infected individualsRelative youth of infected individuals

Infection of multiple members of family or Infection of multiple members of family or community groupcommunity group

Estrangement from family and society Estrangement from family and society

Loss of incomeLoss of income

Lack of insurance - Medicaid and Lack of insurance - Medicaid and Medicare issuesMedicare issues

Social Suffering Social Suffering and HIV/AIDSand HIV/AIDS

Unstable living environmentUnstable living environment

LonelinessLoneliness

Dissatisfaction with available supportDissatisfaction with available support

Lack of recognized long-term Lack of recognized long-term relationshiprelationship

Need for Advance Care PlanningNeed for Advance Care Planning

Need for residential careNeed for residential care

Spiritual Suffering Spiritual Suffering and HIV/AIDSand HIV/AIDS

Perceived and Actual Discrimination Perceived and Actual Discrimination

HomosexualityHomosexuality RaceRace EthnicityEthnicity ClassClass

Spiritual Suffering Spiritual Suffering and HIV/AIDSand HIV/AIDS

Perceived and actual rejection by faith Perceived and actual rejection by faith communitycommunity

Fear of divine judgment and retributionFear of divine judgment and retribution

Lack of time to process life events and Lack of time to process life events and develop sources of meaning and develop sources of meaning and transcendencetranscendence

Unmet need for grace and mercyUnmet need for grace and mercy

Palliative Care Palliative Care for HIV/AIDSfor HIV/AIDS

Many HIV/AIDS primary care providers Many HIV/AIDS primary care providers have recognized the importance of have recognized the importance of incorporating nursing, social work, incorporating nursing, social work, pastoral care and mental health in a pastoral care and mental health in a coordinated holistic model of care coordinated holistic model of care

New service models have developed New service models have developed because of fear, prejudice and because of fear, prejudice and discrimination by community providersdiscrimination by community providers

Hospice Care Hospice Care for HIV/AIDSfor HIV/AIDS

Late Hospice Referrals are CommonLate Hospice Referrals are Common

Difficult for patients to accept hospiceDifficult for patients to accept hospice Difficult for providers determine Difficult for providers determine

appropriateness because of appropriateness because of effectiveness of HAART treatmenteffectiveness of HAART treatment

Lack of stable home environment and Lack of stable home environment and primary caregiverprimary caregiver


Persons with HIV/AIDS Persons with HIV/AIDS

frequently receive EOL care frequently receive EOL care

in “non-traditional” hospice settingsin “non-traditional” hospice settings

Acute care hospitalsAcute care hospitals Residential care facilitiesResidential care facilities Prisons Prisons


There is an international need for hospice There is an international need for hospice and palliative care as primary treatment and palliative care as primary treatment because of lack of infrastructure for because of lack of infrastructure for medical treatmentmedical treatment

HAART is unlikely to become widely HAART is unlikely to become widely available because of expense and available because of expense and difficulty of treatment management in difficulty of treatment management in poor and developing countriespoor and developing countries


Needs to be available to patients and their Needs to be available to patients and their medical providersmedical providers

Could become a model for the incorporation Could become a model for the incorporation of palliative care into other chronic illnessesof palliative care into other chronic illnesses

Care needs to be flexible and responsive to Care needs to be flexible and responsive to patient and caregiver needspatient and caregiver needs

Providers need to learn from each other Providers need to learn from each other about management of HIV/AIDS throughout about management of HIV/AIDS throughout the course of the diseasethe course of the disease


Offers Possibility for GrowthOffers Possibility for Growth

IndividualIndividual CommunityCommunity ProfessionProfession

HIV/AIDS HIV/AIDS and Palliative Careand Palliative Care

Consult Early and OftenConsult Early and Often

Documents

General Debility The Palliative Response F. Amos Bailey, M.D