HIV / AIDS Palliative Care Work Group

Carla Alexander, MDCarla Alexander, MD

AndAnd

Tony Back, MDTony Back, MD

2/20022/2002

Why now?

With longer life expectancy quality With longer life expectancy quality of life more importantof life more important

Decreasing mortality rate gives Decreasing mortality rate gives false sense of security (chronic false sense of security (chronic illness)illness)

Current providers not prepared to Current providers not prepared to cope with declinecope with decline

HIV as a chronic illness

Like CHF & COPD – Same Like CHF & COPD – Same medications throughout coursemedications throughout course

Course of therapy not necessarily Course of therapy not necessarily congruent with clinical responsecongruent with clinical response

More like cancer but when to d/c More like cancer but when to d/c drugs ?drugs ?

Changing epidemiology

PopulationsPopulations Dually and triply diagnosedDually and triply diagnosed PrisonsPrisons WomenWomen Younger generation & childrenYounger generation & children

Research

Epidemiology of symptoms & of dyingEpidemiology of symptoms & of dying Prognostic indicatorsPrognostic indicators Evaluate existing AIDS literature re Evaluate existing AIDS literature re

palliative issuespalliative issues Identify policy issuesIdentify policy issues Methods for motivating internal Methods for motivating internal

championschampions

Education

Clinician-directed & patient-directedClinician-directed & patient-directed Traditional topics, egTraditional topics, eg

Communications skillsCommunications skills Goal settingGoal setting

Personal awarenessPersonal awareness Teaching strategiesTeaching strategies Policy issuesPolicy issues

Clinical Care

Standards of careStandards of care What exists ?What exists ? Survey of how programs handle end of Survey of how programs handle end of

life issueslife issues Identify model systems for deliveryIdentify model systems for delivery

Social Dimensions

Advocacy / support / community / Advocacy / support / community / cultureculture

Define appropriate expectationsDefine appropriate expectations How to help professionals develop How to help professionals develop

sensitivitiessensitivities Uncover true costs of careUncover true costs of care

Not in the scope but of utmost importance . . .

International picture of epidemicInternational picture of epidemic Palliative care not to supplant Palliative care not to supplant

care but to offer support care but to offer support regardless of treatment optionsregardless of treatment options