EOL & Hospice CareEOL & Hospice Care

James A Zachary MDJames A Zachary MDLSU Health Sciences CenterLSU Health Sciences Center

HIV Outpatient ClinicHIV Outpatient Clinic

December 13, 2004December 13, 2004

EOL & Hospice Care

EOL & Hospice EOL & Hospice CareCare

Hospice CareHospice Care Multidisciplinary program devoted to Multidisciplinary program devoted to

providing end-of-life care (6 months or providing end-of-life care (6 months or less as defined by Medicare)less as defined by Medicare) Palliative & spiritual care for patientPalliative & spiritual care for patient Psychological & spiritual support for family & friendsPsychological & spiritual support for family & friends

Usually outpatientUsually outpatient ““Directed” by designated primary care Directed” by designated primary care

provider or hospice directorprovider or hospice director Requires caretaker (or, assisted-living Requires caretaker (or, assisted-living

situation, eg Belle Reeve, Lazarus situation, eg Belle Reeve, Lazarus House)House)

Nursing home: payment problems?Nursing home: payment problems?

Hospice CareHospice Care

Most common diagnosisMost common diagnosisEnd stage lung diseaseEnd stage lung diseaseCongestive heart failureCongestive heart failureDementia Dementia Amyotrophic lateral sclerosisAmyotrophic lateral sclerosisStrokeStrokeAcquired immunodeficiency Acquired immunodeficiency

syndrome (AIDS)syndrome (AIDS)

Hospice CareHospice CarePre-hospice integration into care Pre-hospice integration into care

modelmodelTreat to cureTreat to cureOverly aggressive and Overly aggressive and

expensive utilization of expensive utilization of healthcare serviceshealthcare services

Patients and family express Patients and family express dissatisfaction with MD’s dissatisfaction with MD’s handling of dying patienthandling of dying patient

Hospice CareHospice Care Many physicians are Many physicians are uncomfortableuncomfortable taking care of taking care of

dying patientsdying patients The fact that there may be The fact that there may be no curative no curative

interventionsinterventions is difficult to accept by some is difficult to accept by some physiciansphysicians

Patients and families may not be allowed to Patients and families may not be allowed to accept that their disease is terminal accept that their disease is terminal

In the final days of life, many patients receiving In the final days of life, many patients receiving aggressive treatment may be aggressive treatment may be denied the denied the possibility of preparingpossibility of preparing for death and suffer for death and suffer physically, emotionally, and spirituallyphysically, emotionally, and spiritually

Hospice CareHospice Care The HospiceThe Hospice model attempts to bring model attempts to bring

affirmation to the patient's life, while treating affirmation to the patient's life, while treating the dying patient on an emotional, spiritual, the dying patient on an emotional, spiritual, and physical leveland physical level

When a cure is no longer possible, the goal is When a cure is no longer possible, the goal is to keep the patient comfortable (palliation)to keep the patient comfortable (palliation)

Health care providers who do not have Health care providers who do not have adequate training or experience in palliative adequate training or experience in palliative care may exhibit inappropriate attitudes care may exhibit inappropriate attitudes toward the terminally ill, resulting in needless toward the terminally ill, resulting in needless sufferingsuffering

Hospice CareHospice Care Patients with Patients with poor symptom controlpoor symptom control not only not only

have their quality of life adversely affected but have their quality of life adversely affected but often become socially isolated and withdrawnoften become socially isolated and withdrawn

In the final days of life, terminally ill patients In the final days of life, terminally ill patients with inadequate symptom control may miss with inadequate symptom control may miss the the opportunity to be surrounded by family opportunity to be surrounded by family and friendsand friends and and may not experience a peaceful may not experience a peaceful and tranquil deathand tranquil death

Hospice care picks up where curative therapy Hospice care picks up where curative therapy ends allowing the provider to feel assured that ends allowing the provider to feel assured that they have done their best throughout the they have done their best throughout the patient’s life!patient’s life!

Growth of Hospice Care in Growth of Hospice Care in USUS

Clinics in Office PracticeVolume 28 • Number 2 • June 2001

Growth of Hospice Care in Growth of Hospice Care in USUS

Clinics in Office PracticeVolume 28 • Number 2 • June 2001

History of HospiceHistory of Hospice

SaundersSaunders founded the first modern founded the first modern hospicehospice in England in in England in 19671967 (St (St Christopher’s)Christopher’s)

Team conceptTeam concept pioneered there pioneered there Saunders introduced Saunders introduced aggressive pain aggressive pain

managementmanagement Saunders demonstrated that hospice Saunders demonstrated that hospice

care could be effective care could be effective administered in administered in patient’s homepatient’s home

History of HospiceHistory of Hospice Success of St Christopher’s opened up the door for Success of St Christopher’s opened up the door for

hospices to open in Europe and Canadahospices to open in Europe and Canada First American hospiceFirst American hospice was established in New was established in New

Haven, Connecticut, funded by the National Cancer Haven, Connecticut, funded by the National Cancer Institute as a national demonstration project for Institute as a national demonstration project for home care of the terminally ill and their familieshome care of the terminally ill and their families

The first hospices in the United States relied The first hospices in the United States relied mostly on grants and donationsmostly on grants and donations to serve the to serve the terminally ill and at first were staffed entirely by terminally ill and at first were staffed entirely by professional and lay volunteers. professional and lay volunteers.

In In 19821982, Congress passed the , Congress passed the Tax Equity and Tax Equity and Fiscal Responsibility ActFiscal Responsibility Act, which authorized , which authorized Medicare to reimburse Medicare to reimburse hospiceshospices for the care of the for the care of the terminally ill who met specific criteria.terminally ill who met specific criteria.

Hospice CareHospice Care Designed for 6 months or less Designed for 6 months or less

length of stay per patient originallylength of stay per patient originally Average length of stay: Average length of stay: 6 days6 days Barriers to hospice referralBarriers to hospice referral

Poor knowledge of end-of-life Poor knowledge of end-of-life prognostic factors in the appropriate prognostic factors in the appropriate disease processdisease process

Academic institution’s almost Academic institution’s almost exclusive emphasis on diagnosis and exclusive emphasis on diagnosis and curecure

Evolving medical science: (false?) Evolving medical science: (false?) hope for curehope for cure

Unwillingness to provide/accept Unwillingness to provide/accept hospice referralhospice referral

PatientsPatients: fear of death, fear of pain, : fear of death, fear of pain, cultural concernscultural concerns

FamilyFamily: loss of family member, loss of : loss of family member, loss of monetary supportmonetary support

Hospice CareHospice Care

Providers poor referral rate to hospiceProviders poor referral rate to hospiceLack of timeLack of timeLack of experience, or training in Lack of experience, or training in

establishing and/or discussing prognosis establishing and/or discussing prognosis and hospice careand hospice care

Hard time “giving up”Hard time “giving up”Poor understanding of the hospice conceptPoor understanding of the hospice conceptUnfailing trust in the evolution of medical Unfailing trust in the evolution of medical

sciencescience

Overcoming Barriers to Overcoming Barriers to HospiceHospice Poor knowledge of end-of-life prognostic Poor knowledge of end-of-life prognostic

factors in the appropriate disease factors in the appropriate disease processprocess Study the relevant literature, orStudy the relevant literature, or Call in consultants with the appropriate Call in consultants with the appropriate

prognostic knowledgeprognostic knowledge Experience!Experience!

Academic institution’s emphasis on Academic institution’s emphasis on diagnosis and curediagnosis and cure Develop curricula devoted to end-of-life Develop curricula devoted to end-of-life

issuesissues Psychological and spiritual issuesPsychological and spiritual issues Communication issuesCommunication issues EOL mentoring by terminally-ill patients & EOL mentoring by terminally-ill patients &

appropriate facultyappropriate faculty Encourage specialized End-of-Life care Encourage specialized End-of-Life care

programsprograms

Overcoming Barriers to Overcoming Barriers to HospiceHospice

Unwillingness to provide/accept Unwillingness to provide/accept hospice referralhospice referral Patients: distrust of medical system, fear of death, fear Patients: distrust of medical system, fear of death, fear

of pain, “go-stop” phenomenaof pain, “go-stop” phenomena Proactive discussion initiated early in provider-patient relationshipProactive discussion initiated early in provider-patient relationship Advanced directivesAdvanced directives Assurances of aggressive palliative careAssurances of aggressive palliative care Spiritual well-beingSpiritual well-being Consistent approach to prognosis and careConsistent approach to prognosis and care

Family: loss of family member, loss of monetary supportFamily: loss of family member, loss of monetary support Involvement with provider-patient early on in disease processInvolvement with provider-patient early on in disease process Advanced directivesAdvanced directives Spiritual well-beingSpiritual well-being

Providers: lack of time, experience, or training in Providers: lack of time, experience, or training in discussing prognosis and hospice carediscussing prognosis and hospice care

Emphasize critical humanistic importance of these issuesEmphasize critical humanistic importance of these issues Encourage realistic communications at all timesEncourage realistic communications at all times Specialized EOL teams to assist with all of the aboveSpecialized EOL teams to assist with all of the above

MWMW CD4 80CD4 80 Stage 4 adenoCa of lung Stage 4 adenoCa of lung

with mets to brainwith mets to brain OtherOther

CachecticCachectic OdynophagiaOdynophagia N + VN + V Back pain: cervical & lumbarBack pain: cervical & lumbar Pleuritic chest painPleuritic chest pain Hgb 6Hgb 6 Oral candidiasisOral candidiasis ConstipationConstipation

Meds: fentanyl transdermal, Meds: fentanyl transdermal, oxycodone liquid, no ARVsoxycodone liquid, no ARVs

TBTB 29 y/o female29 y/o female Cryptosporidiosis with probable cholangial Cryptosporidiosis with probable cholangial

involvementinvolvement End stage liver disease due to chronic hep B End stage liver disease due to chronic hep B

(INR 5.6)(INR 5.6) CD4= 3CD4= 3 OtherOther

Multiple recent hospitalizationsMultiple recent hospitalizations N + V, dehydrationN + V, dehydration Oral candidiasisOral candidiasis Chest painChest pain DepressionDepression Family unaware of HIV dx (?)Family unaware of HIV dx (?)

Meds: lactulose, no ARVsMeds: lactulose, no ARVs

JKJK 47 y/o male47 y/o male End stage lung disease/COPD End stage lung disease/COPD

on home Oon home O22

CD4 = 15 CD4 = 15 Chronic inadherence Chronic inadherence (not seen in (not seen in

clinic x 8 mos)clinic x 8 mos)

OtherOther MalnourishedMalnourished Still smokingStill smoking Very frequent admissions for resp failureVery frequent admissions for resp failure

Meds: no ARVs, MDIs, Meds: no ARVs, MDIs, antibioticsantibiotics

BSBS 43 y/o female43 y/o female Chronic rifampin-resistant TB Chronic rifampin-resistant TB

meningitis with paraplegiameningitis with paraplegia Unable to swallowUnable to swallow Bed-boundBed-bound Large decubitus ulcers with Large decubitus ulcers with

osteomyelitisosteomyelitis PEG tube for hydration & feedsPEG tube for hydration & feeds OtherOther

HIV/AIDSHIV/AIDS No diverting colostomyNo diverting colostomy Husband died of AIDS in last yearHusband died of AIDS in last year Chronic painChronic pain

Meds: oxycodone liquid, no ARVs, Meds: oxycodone liquid, no ARVs, anti-TB meds, fentanyl transdermalanti-TB meds, fentanyl transdermal

RLRL 39 y/o female39 y/o female Severe AIDS dementia (unable to care Severe AIDS dementia (unable to care

for herself)for herself) Multiple recent admissionsMultiple recent admissions Mod severe pruritic HIV dermatitisMod severe pruritic HIV dermatitis CD4 12CD4 12 No ARVsNo ARVs OtherOther

Lives at Lazarus HouseLives at Lazarus House Spells/syncope/seizuresSpells/syncope/seizures Small superficial decubitusSmall superficial decubitus Cholestatic hepatitisCholestatic hepatitis Recent Recent S pyogenesS pyogenes bacteremia bacteremia

EKEK 42 y/o male42 y/o male MalnourishedMalnourished Chemically dependent (cocaine/EtOH)Chemically dependent (cocaine/EtOH) CD4-depleted (CD4 52 in 5/2000)CD4-depleted (CD4 52 in 5/2000) Multiple recent hospitalizationsMultiple recent hospitalizations OtherOther

Lytic lumbar spine lesionLytic lumbar spine lesion Proximal muscle weaknessProximal muscle weakness Oral candidiasisOral candidiasis Homeless (living abandoned car)Homeless (living abandoned car)

Meds: no ARVsMeds: no ARVs Chronically inadherentChronically inadherent

MWMW 39 y/o male39 y/o male Recurrent pneumocystis pneumoniaRecurrent pneumocystis pneumonia Chronic chemical dependence (cocaine/EtOH)Chronic chemical dependence (cocaine/EtOH) Chronic mental illness: psychosis vs schizotypalChronic mental illness: psychosis vs schizotypal Homeless (Salvation Army)Homeless (Salvation Army) CD4-depleted (CD4 = 3 as of 3/2001)CD4-depleted (CD4 = 3 as of 3/2001) Multiple recent hospitalizations (recent AMA)Multiple recent hospitalizations (recent AMA) MalnourishedMalnourished OtherOther

Oral candidiasisOral candidiasis Perianal HSVPerianal HSV Neutropenia, granulocytopenia, anemiaNeutropenia, granulocytopenia, anemia Hepatitis CHepatitis C

Meds: suspect chronic inadherence to ARVs & PCP Meds: suspect chronic inadherence to ARVs & PCP prophylaxisprophylaxis

AWAW39 y/o woman with children39 y/o woman with childrenCD4 = 10CD4 = 10Steady downward courseSteady downward courseMultiple hospitalizationsMultiple hospitalizationsPoor functional statusPoor functional statusChronic inadherence/intolerance to Chronic inadherence/intolerance to

ARVsARVsNovember 2001: TTP, malnutritionNovember 2001: TTP, malnutrition

Z-Factors for AIDS Z-Factors for AIDS Hospice RxHospice Rx

CD4-depletionCD4-depletionSteady trend toward decline: clinical and Steady trend toward decline: clinical and laboratorylaboratory

Multiple recent hospitalizationsMultiple recent hospitalizations Multiple OIs: DMAC, CNS toxoMultiple OIs: DMAC, CNS toxo Malnutrition/wastingMalnutrition/wasting Multiple life-threatening diagnoses Multiple life-threatening diagnoses Multiple symptoms usually including chronic painMultiple symptoms usually including chronic pain Chronically poor functional statusChronically poor functional status Chronically nonadherentChronically nonadherent**/intolerant/not on ARVs/intolerant/not on ARVs Chronic chemical dependenceChronic chemical dependence Poor support system? Poor support system? CNS lesions?CNS lesions? Refractory oral/esophageal candidiasisRefractory oral/esophageal candidiasis Antiretroviral resistance?Antiretroviral resistance?

The Hospice RxThe Hospice Rx

Plan session and discuss Plan session and discuss terminal prognosis with terminal prognosis with patient includingpatient including Designated caretaker and as Designated caretaker and as

many family members as many family members as possiblepossible

Primary Care providerPrimary Care provider Social ServicesSocial Services NursingNursing PalCare representativePalCare representative ? ?

The Hospice RxThe Hospice Rx Emphasize that HospiceEmphasize that Hospice

is an “aggressive” form of is an “aggressive” form of therapy appropriatetherapy appropriate with with the phase of life that the the phase of life that the patient has enteredpatient has entered

provides support for the provides support for the patient, their family & patient, their family & friends both in life and in friends both in life and in the bereavement periodthe bereavement period

caters to the physical, caters to the physical, mental & spiritual sides of mental & spiritual sides of the patient & their familythe patient & their family

is a “prescription” is a “prescription” appropriate for this patient appropriate for this patient like a cast would be for a like a cast would be for a broken arm, antibiotics for a broken arm, antibiotics for a pneumonia, etc.pneumonia, etc.

The Hospice RxThe Hospice Rx

Designate patient “Do Not Resuscitate” in Designate patient “Do Not Resuscitate” in medical recordmedical record A physician decision made in consultation with A physician decision made in consultation with

another MDanother MD Ethical responsibility to inform patient and Ethical responsibility to inform patient and

familyfamily Ask Social Services to initiate contact with Ask Social Services to initiate contact with

Hospice AgencyHospice Agency Designate hospice-care MD for this Designate hospice-care MD for this

patientpatient Order suitable palliative care measuresOrder suitable palliative care measures

Standing orders?Standing orders? Durable medical equipment: Durable medical equipment: hospital bed, bed hospital bed, bed

side commode, wheelchair, etc.side commode, wheelchair, etc. Palliative medications: Palliative medications: analgesics, anxiolytics, analgesics, anxiolytics,

antidepressants, antiemetics, hypnoticsantidepressants, antiemetics, hypnotics

The Hospice Rx: The Hospice Rx: ProblemsProblems

Avoid “stop-go”: Avoid “stop-go”: get all providers on get all providers on the same pagethe same page

Patient/family refuses hospicePatient/family refuses hospice Hope for the best!Hope for the best! Consider enlisting support of patient’s most trusted Consider enlisting support of patient’s most trusted

confidantesconfidantes PalCare consultPalCare consult Consider moderately aggressive care with Advanced Consider moderately aggressive care with Advanced

Directives specifying “DNR” (if patient improves, Directives specifying “DNR” (if patient improves, collaborate with them on new Advanced Directives)collaborate with them on new Advanced Directives)

As downward course continues, attempt hospice Rx As downward course continues, attempt hospice Rx repeatedlyrepeatedly

Patient goes to hospital while on Patient goes to hospital while on hospicehospice Discuss & confirm terminal prognosis Discuss & confirm terminal prognosis

with care teamwith care team Optimized palliation in houseOptimized palliation in house

Robert Woods Johnson grantee 1998Robert Woods Johnson grantee 1998 MultidisciplinaryMultidisciplinary

Harlee KutzenHarlee Kutzen: PI, guru, palliative care/pain expert: PI, guru, palliative care/pain expert Carole PindaroCarole Pindaro: palliative care provider: palliative care provider Peter DragoPeter Drago: general workhorse, coordination, : general workhorse, coordination,

communication facilitation, mental health providercommunication facilitation, mental health provider Jim ZacharyJim Zachary: palliative care provider, hospice : palliative care provider, hospice

coordinator, interest in addiction/pain control, website coordinator, interest in addiction/pain control, website techietechie

Designed to bridge the gap between curative Designed to bridge the gap between curative therapy and hospicetherapy and hospice

Proven benefits to patients, providers, and Proven benefits to patients, providers, and systemsystem

PalCarePalCare