Palliative Care Unit 18 HIV Care and ART: A Course for Healthcare Providers

Palliative Care

Unit 18HIV Care and ART:

A Course for Healthcare Providers

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Learning Objectives

Define palliative care and its role in the management of HIV

Describe palliative care in the African context Assess and manage pain and dyspnea in HIV Communicate bad news and discuss end-of-life

care

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Introductory Case: Yared

Yared is a 35 year-old HIV+ gentleman who returns to clinic complaining of nausea and diarrhea.

6 months ago his ART regimen was changed to Nelfinavir, AZT, and ddI because of immunologic treatment failure.

The patient has a history of CNS toxoplasmosis and pulmonary TB.

He lost his job and started drinking ETOH daily since his wife died in a car accident 1 year ago.

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Introductory Case: Yared (cont.)

Alert and oriented, but appears fatigued and chronically ill

T 37.7 HR 110 BP 90 / 70 47 kg (7 kg weight loss since last visit) Pale conjunctivae White plaques on soft palate Normal exam otherwise

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Volume depletion Nausea & diarrhea Clinical treatment failure (new thrush, wt loss) Pallor Alcohol dependence Unemployment

What are his palliative care needs?

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Principles of Palliative Care

Interventions that improve the quality of life for patients and their families

Prevention and relief of suffering pain and other physical problems psychosocial and spiritual issues

An integral part of a comprehensive care and support framework

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Principles of Palliative Care

In the framework of a continuum of care from the time the incurable disease is diagnosed until the end of life

Regards dying as a normal process and affirms life

Offers support to help the patient and family cope during the patient’s illness and in the bereavement period

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Pre-HAART Palliative Care Model

Diagnosis Death

Therapies to modify disease(curative, restorative intent) Hospice

BereavementCare

6m

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The Role of Palliative Care inHAART Era

Diagnosis Death

Therapies to modify disease(curative, restorative intent) Actively

Dying

BereavementCare

Life Closure

Palliative Care: interventions intended to relieve suffering and improve quality of life

6m

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Palliative Care and ART

Antiretroviral therapy does not avert the need for palliative care 40–50% of patients experience virological failure 40% of patients have adverse reactionsHIV-related cancers still occurPsychological and spiritual needs persist

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Role of Palliative Care in HIV

Treatment of antiretroviral side effects Management of HIV complications Relief of psychosocial challenges Improved ART adherence Reduction of drug resistance in the individual

and community Preparation for end-of-life

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Nausea Diarrhea Fatigue Substance dependence Unemployment Lack of social support

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Return to Case Study

Yared returns to the clinic 1 month later His diarrhea and nausea have improved with

interventions offered at the last visit. He is still fatigued, however, and continues to use ETOH.

He is now living with his uncle 500 km away from clinic.

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Palliative Care in Africa

Palliative care models for developed countries may not work in AfricaFeasibility ?Accessibility ?Sustainability ? Cultural diversity ?

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Challenges to Palliative Care in Africa

Late disease presentation Inadequate diagnostic facilities and assessment

skills Poor availability of chemotherapy and

radiotherapy Absence of opioids

Regulatory and pricing obstacles Ignorance and false beliefs

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Cultural Variation and Preferences

A “good death” in Africa varies culturally and historically

Bearing bad news could be seen as the cause of a terminal illness

Labeling patients as “terminally ill” may have harmful consequencesIsolationDenied access to care

Traditions need to dictate appropriate models of care

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Palliative Care Needs in Africa

Hospice care (home and hospice center) Pain and symptom control Financial support Emotional and spiritual support Food and shelter Legal help and school fees

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Models in Africa

Home-based care has been the most common service model in Africa

Limitations of home-care modelsInadequately trained care givers Lack access to essential drugsLimited access for patients in inaccessible

geographical areasStigma

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WHO Palliative Care Project

WHO “community health approach to palliative care for HIV/AIDS and cancer patients in Africa project.” 2001Botswana, Ethiopia, Uganda, Tanzania, and

Zimbabwe

Objective Improve the quality of life of patients and their families

in African countriesDevelop home based palliative care models

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End of Life Experience in Ethiopia

86 adults surveyedFamilies members of a person bed-ridden with AIDSThe most common problems identified:

• Pain associated with the illness (76%)

• Vomiting, diarrhea, and appetite loss (30%)

• Cost of and lack of drugs

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End of Life Experience in Ethiopia (2)

Patient needs were not met in most casesRelief of pain Relief of symptoms

Burden on familyEducation interruption Financial constraints Emotional (anxiety, fear, sadness)Physical

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The Role of Stigma in Ethiopia

Physician reluctance to pass bad news to patients on any health matter, especially AIDS

Fear of discrimination often prevents many Ethiopians from seeking treatment for AIDS

Many people with AIDS have been evicted from their homes by their families and rejected by their friends and colleagues

Infected children are often orphaned or abandoned

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Direction of Palliative Care in Africa

Understanding of the capacity and needs of the community

Innovation within a framework Trend towards home-based care (e.g. Ethiopia) Integrated approach with strong referral links Addresses need at all stages of disease Provision of simple protocols

The WHO Integrated Management of Adolescent Illness (IMAI) manual

Advocacy

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Yared returns to the clinic 4 months later He is very fatigued and has developed burning

lower extremity pain.

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Advanced HIV: A Spectrum of Symptoms Pain Diarrhea, nausea, vomiting Fever Dyspnea, cough Fatigue Orthopnea, PND Skin disorders Confusion Depression, anxiety, fatigue, fear

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Pain

The symptom most feared when patients contemplate death

Usually a manifestation of physical distress May be exacerbated by anxiety, fear, depression Ability to tolerate and cope with pain varies

drastically between patients

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Pain Syndromes in HIV

Abdominal pain Peripheral neuropathy Oropharyngeal pain Headache pain Post-herpetic neuralgia Musculoskeletal pain

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Peripheral Neuropathies

Among the most common causes of pain in HIV The neuropathies associated with HIV can be

classified as Primary HIV-associated Secondary diseases caused by

• Neurotoxic substances • Opportunistic infections

Grouped by Timing in relation to onset of HIV infectionClinical and diagnostic features

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Distal Symmetrical Sensory Polyneuropathy (DSSP)

Most frequent neurological complication associated with HIV infection > 1/3 of HIV-infected patients

Pathophysiology unclear Course: Slowly progressive sensory features Location: feet, lower extremity, sometimes

hands; symmetrical distribution

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Clinical feature of DSSP

SymptomsPainTinglingNumbness

SignsDepressed or absent ankle reflexesElevated vibration threshold at toes and ankles Decreased sensitivity to pain and temperature in a

stocking distribution

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NRTI associated DSSP

Thought to be secondary to mitochondrial toxicity from ddI, d4T or ddC

Clinically indistinguishable from HIV-related DSSP Temporal relationship to NRTI drug use

Up to 30% of patients affected; after 3-6 mo of use

May be permanent Increase risk associated with advanced HIV disease,

alcoholism, diabetes, vitamin B12 or thiamine deficiency, and neurotoxic drugs (e.g. INH)

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NRTI associated DSSP (2)

Early recognition is critical NRTI dosing

May be dose-reducedMay be stopped and switched to an alternate non-

toxic antiretroviral agent Symptomatic relief may begin to be noted

approximately 4 weeks after discontinuation of the neurotoxic antiretroviral

In some patients, symptoms may persist, most likely because of coexistent HIV DSSP

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Assessment of Neuropathic Pain

History: onset, duration, character, and severity (scale 1-10)

Physical examination:Pain and temp (diminished sensation in DSSP)Ankle reflexes (absent or depressed in DSSP) Vibratory (elevated thresholds at the toes in DSSP) Proprioception and muscle strength (preserved

except in severe cases of DSSP)

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Pharmacologic Management of Neuropathic Pain

Mild pain: Non-opioid analgesics Ibuprofen 600-800mg orally three times per day Paracetamol (Acetaminophen)

Moderate-to-severe pain: opioid analgesic combinations Paracetamol plus codeine Adjuvant analgesics

• TCAs (Amitriptyline) • Anti-epileptics (Lamotrigine and Gabapentin)

Severe pain: opioid analgesicMorphine

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Yared returns to clinic 2 weeks later with continued pain despite Dose reduction in ddI (200 bid ->125 bid) Stopping ETOHTaking Ibuprofen 600mg bid.

Physical examination is unchanged

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WHO 3-step Analgesics Ladder

■ Morphine

■ Hydromorphone

■ Methadone

■ Levorphanol

■ Fentanyl

■ Oxycodone

■ ± Adjuvants

3 severe

2 moderate

■ A/Codeine

■ A/Hydrocodone

■ A/Oxycodone

■ A/Dihydrocodeine

■ ± Adjuvants

1 mild

■ ASA

■ Acetaminophen

■ NSAIDs

■ ± Adjuvants

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Yared returns 2 months later He is tachypneic, cyanotic, delirious, and

unable to stand. He says to you “I can’t breath”.

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Dyspnea

A subjective awareness of difficulty or distress associated with breathing

Mechanisms are not well understood Often ignored by health professionals The patient's report is the best indicator of dyspnea

Not respiratory rate and oxygenation status

Often takes a chronic course of respiratory decline Punctuated by episodes of acute shortness of breath

and increased anxiety

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Causes of Dyspnea in HIV

Opportunistic infections Pulmonary malignancies Pneumothorax Asthma Bronchiectasis Pulmonary embolism Severe anemia Congestive heart failure Debilitation / severe wasting

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Assessment of Dyspnea

History Onset, duration, PCP-prophylaxis

Physical examVitals, Pulmonary, Cardiac, Extremities, etc

Diagnostic testingCXR, CBC, Chemistry

Prompt diagnosis Ensure best chance of curative treatment

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Onset of dyspnea was gradual, and associated with dry cough and fever. He stopped taking Bactrim one month ago

T 38.5 HR 110 BP 98 / 70 RR 35 Pale, cyanotic, fatigued Cardiac and lung exam were normal No lower extremity edema Laboratory:

Hgb 5 gm/dl, MCV 104, Creatinine 1.1.

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© Slice of Life and Suzanne S. Stensaas

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Yared was admitted to the hospital and started on high dose Co-trimoxazole plus steroids for treatment of PCP

He was also provided a blood transfusion.

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Nonpharmacologic Treatment of Dyspnea

Position patient for comfortProp patient forward using pillows May allow better lung expansion / gas exchange

Provide cool circulating air Encourage presence of family and caregivers Consider pursed-lip breathing Promote soothing activities, such as prayer or

listening to relaxing music

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Oxygen Therapy

Titrated to comfort is recommended for terminally-ill, hypoxemic, and dyspneic patients

Role in treating patients who are not hypoxemic is less clear

Many patients and families believe that oxygen can alleviate shortness of breath

If it does no harm, oxygen administration may confer a psychological benefit

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Pharmacologic Management of Dyspnea

Opioids - the primary modalityMechanism of action is not clearly understoodStart low dose (5 to 10 mg PO morphine or 2 to 4 mg

IV or SC morphine)Start early in course of dyspnea

• help reduce the effects of respiratory depression

• allows for rapid titration to levels that can comfort the patient and reduce anxiety

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Pharmacological Management of Dyspnea

Anxiolytics Should be considered as a second-line intervention Used when a "true” anxiety (psychological rather than

physiologic in origin) is perceived

Disease specific treatmentBronchodilators Diuretics Steroid Antibiotics

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Cough

Violent expiration of air through the glottis Thought to result from irritation and inflammation

of sensory receptors in the tracheobronchial tree Usually related to

Increased mucus productionAspiration of mucus Gastric contents

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Cause of Cough in HIV

Inflammatory processes caused by infections TuberculosisBacterial / fungal pneumonia

Bronchial lesions Lung parenchymal disease

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Management of Cough

Avoid stimuli that may induce coughingsmoke, cold air, exercise

Elevate head of bed (reduce gastroesophageal reflux)

Bronchodilators Corticosteroids Cough suppressant (when no therapeutic

reason to stimulate cough)Opioid based medicine

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Delirium

An acute confusional stateDisturbances of level of consciousnessAttentionThinking Perception Memory Psychomotor behavior

Progresses rapidly over hours or days Early symptoms are often nonspecific

irritability disturbances in the sleep-wake cycle

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Cause of Delirium in HIV

Infection Metabolic Drugs Endocrine Inflammation Vascular Malignancy

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Management of Delirium

Assess and treat underlying cause Create quiet, familiar, comfortable environment If persistent

Antipsychotics (Haloperidol)Anxiolytics (Diazepam) – use with caution; may

worsen confusion

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Despite 10 days of appropriate therapy for PCP, the patient’s condition continues to deteriorate. Additional measures have been taken to manage the patient’s dyspnea, cough, and delirium. AB’s uncle and sister arrive later to the hospital. The family wants to know his status and prognosis.

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Bad News

Physicians are continuously faced with the challenge of telling patients and their families bad news

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Clinical Outcomes

How bad news is discussed has implicationspatient's comprehension of informationsatisfaction with medical care level of hopefulness subsequent psychological adjustment

Delivering unfavorable medical information does not necessarily cause psychological harm

Patients desire accurate information to assist them in making important quality-of-life decisions

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Response to Bad News

When patients are given bad news, they have a wide variety of reactions.

There is no single reaction to expect. Possible reactions:

Shock Fright Accept Sadness Not worried

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Discussing Death: Cultural Perspectives

Some cultures believe that discussion of death can hasten itAfrican-AmericansNative-AmericansImmigrants from China, Korea, MexicoEthiopians?

Need to explore individual perspectives

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Barriers to Delivering Bad News

People who deliver bad news experience strong emotions

MD reluctance to deliver bad news AnxietyBurden of responsibility for the newsFear of negative evaluationFear of destroying hopeInadequacy dealing with the patient's emotions

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Patient and Clinician Stress Related to Bad News

Stress

TimeEncounter

PatientClinician

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A Recommended Protocol for Giving Bad News (SPIKES)

Set up the interview: mental and physical preparation

Perception: assess what the patient knows about the medical situation

Invitation: ask how much they want to know Knowledge: give the medical facts Emotion: respond to patients emotions Strategy and summary: negotiate a concrete

follow-up step

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STEP 1: Setting up the Interview

Mental rehearsalAnticipate difficult emotions / questionsReview strategy / importance of giving information

Select appropriate settingPrivacyInvolve significant othersSit downInitiate connectionManage time constraints

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STEP 2: Perception

“Before you tell, ask” Use open ended questions

“What is your understanding of your medical situation?”

“What have you been told about your medical condition?”

Correct misinformation Tailor bad news to patients understanding Uncover forms of illness denial

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STEP 3: Invitation

Majority of patients want full information (US & Europe)

BUT some do not“How would you like me to give the information about

the tests?”“Would you like me to give all the information?”

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STEP 4: Knowledge

Warn the patient that bad news is coming“I have some bad news about the results of your

blood test.” Use language at the level of comprehension and

vocabulary of the patient Use non-technical terminology Avoid excessive bluntness Assess patient’s understanding frequently

“Did you understand that? Did that make sense to you?”

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STEP 5: Emotion

Observe Identify Connect cause Communicate understanding Empathize

“I know that this isn't what you wanted to hear” I wish the news were better”Reduce the patient's isolationValidate patient's feelings

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STEP 6: Strategy

Develop a clear follow-up plan Address patient goals

Discuss management options when patient is ready

Share responsibility for decision-making

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End-of-Life Discussion

Utilize SPIKES principles Elicit patient/family’s understanding and values Use language appropriate to the patient Align patient and clinician views Use repetition to show you are listening Acknowledge emotions, difficulty, fears Use reflection to show empathy Tolerate silences

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Key Points

Palliative care is integral to HIV care from the time of diagnosisPalliative care faces unique challenges in Africa and

must be culturally sensitiveManagement of pain and dyspnea includes both

pharmacological and non-pharmacological methodsPain is common in HIV and can be managed

according to WHO pain ladder Delivering bad news and talking about death is part of

effective palliative care

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Key Points

Delivering Bad News Giving bad news and talking about death is a

fundamental communication skill for doctorsExploring individual and cultural beliefs is important in

adapting the bad news communication to each patient How bad news is delivered can affect how patients

adjust to their illness

Documents

Palliative Care Unit 18 HIV Care and ART: A Course for Healthcare Providers