Palliative Care
Unit 18
HIV Care and ART:
A Course for Healthcare Providers
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
2
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.
3
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
4
Introductory Case: Yared (cont.)
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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?
5
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
6
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
7
Pre-HAART Palliative Care Model
Therapies to modify disease
(curative, restorative intent)
Diagnosis
Hospice
6m
Death
Bereavement
Care 8
The Role of Palliative Care in
HAART Era
Therapies to modify disease
(curative, restorative intent)
Life
Closure
Actively
Dying
Diagnosis
6m
Death
Palliative Care: interventions intended to
Bereavement
relieve suffering and improve quality of life
9
Care
Palliative Care and ART
 Antiretroviral therapy does not avert the need
for palliative care
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40–50% of patients experience virological failure
40% of patients have adverse reactions
HIV-related cancers still occur
Psychological and spiritual needs persist
10
Role of Palliative Care in HIV
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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
11
Introductory Case: Yared (cont.)
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Nausea
Diarrhea
Fatigue
Substance dependence
Unemployment
Lack of social support
12
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.
13
Palliative Care in Africa
 Palliative care models for developed countries
may not work in Africa
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Feasibility ?
Accessibility ?
Sustainability ?
Cultural diversity ?
14
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
15
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 consequences
 Isolation
 Denied access to care
 Traditions need to dictate appropriate models of
care
16
Palliative Care Needs in Africa
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Hospice care (home and hospice center)
Pain and symptom control
Financial support
Emotional and spiritual support
Food and shelter
Legal help and school fees
17
Models in Africa
 Home-based care has been the most common
service model in Africa
 Limitations of home-care models
 Inadequately trained care givers
 Lack access to essential drugs
 Limited access for patients in inaccessible
geographical areas
 Stigma
18
WHO Palliative Care Project
 WHO “community health approach to palliative
care for HIV/AIDS and cancer patients in Africa
project.” 2001
 Botswana, Ethiopia, Uganda, Tanzania, and
Zimbabwe
 Objective
 Improve the quality of life of patients and their families
in African countries
 Develop home based palliative care models
19
End of Life Experience in Ethiopia
 86 adults surveyed
 Families members of a person bed-ridden with AIDS
 The most common problems identified:
• Pain associated with the illness (76%)
• Vomiting, diarrhea, and appetite loss (30%)
• Cost of and lack of drugs
20
End of Life Experience in Ethiopia (2)
 Patient needs were not met in most cases
 Relief of pain
 Relief of symptoms
 Burden on family
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Education interruption
Financial constraints
Emotional (anxiety, fear, sadness)
Physical
21
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
22
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
23
Introductory Case: Yared (cont.)
 Yared returns to the clinic 4 months later
 He is very fatigued and has developed burning
lower extremity pain.
24
Advanced HIV:
A Spectrum of Symptoms
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Pain
Diarrhea, nausea, vomiting
Fever
Dyspnea, cough
Fatigue
Orthopnea, PND
Skin disorders
Confusion
Depression, anxiety, fatigue, fear
25
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
26
Pain Syndromes in HIV
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Abdominal pain
Peripheral neuropathy
Oropharyngeal pain
Headache pain
Post-herpetic neuralgia
Musculoskeletal pain
27
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 infection
 Clinical and diagnostic features
28
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
29
Clinical feature of DSSP
 Symptoms
 Pain
 Tingling
 Numbness
 Signs
 Depressed or absent ankle reflexes
 Elevated vibration threshold at toes and ankles
 Decreased sensitivity to pain and temperature in a
stocking distribution
30
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)
31
NRTI associated DSSP (2)
 Early recognition is critical
 NRTI dosing
 May be dose-reduced
 May be stopped and switched to an alternate nontoxic 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
32
Assessment of Neuropathic Pain
 History: onset, duration, character, and severity
(scale 1-10)
 Physical examination:
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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)
33
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 analgesic
 Morphine
34
Return to Case Study
 Yared returns to clinic 2 weeks later with
continued pain despite
 Dose reduction in ddI (200 bid ->125 bid)
 Stopping ETOH
 Taking Ibuprofen 600mg bid.
 Physical examination is unchanged
35
WHO 3-step Analgesics Ladder
3 severe
■ Morphine
2 moderate
■ Hydromorphone
■ A/Codeine
■ Methadone
■ A/Hydrocodone
■ Levorphanol
■ ASA
■ A/Oxycodone
■ Fentanyl
■ Acetaminophen
■ A/Dihydrocodeine
■ Oxycodone
■ NSAIDs
■ ± Adjuvants
■ ± Adjuvants
1 mild
■ ± Adjuvants
36
Return to Case Study
 Yared returns 2 months later
 He is tachypneic, cyanotic, delirious, and unable
to stand.
 He says to you “I can’t breath”.
37
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
38
Causes of Dyspnea in HIV
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Opportunistic infections
Pulmonary malignancies
Pneumothorax
Asthma
Bronchiectasis
Pulmonary embolism
Severe anemia
Congestive heart failure
Debilitation / severe wasting
39
Assessment of Dyspnea
 History
 Onset, duration, PCP-prophylaxis
 Physical exam
 Vitals, Pulmonary, Cardiac, Extremities, etc
 Diagnostic testing
 CXR, CBC, Chemistry
 Prompt diagnosis
 Ensure best chance of curative treatment
40
Return to Case Study
 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.
41
Introductory Case: Yared (cont.)
42
© Slice of Life and Suzanne S. Stensaas
Introductory Case: Yared (cont.)
 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.
43
Nonpharmacologic
Treatment of Dyspnea
 Position patient for comfort
 Prop patient forward using pillows
 May allow better lung expansion / gas exchange
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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
44
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
45
Pharmacologic
Management of Dyspnea
 Opioids - the primary modality
 Mechanism of action is not clearly understood
 Start 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
46
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 treatment
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Bronchodilators
Diuretics
Steroid
Antibiotics
47
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 production
 Aspiration of mucus
 Gastric contents
48
Cause of Cough in HIV
 Inflammatory processes caused by infections
 Tuberculosis
 Bacterial / fungal pneumonia
 Bronchial lesions
 Lung parenchymal disease
49
Management of Cough
 Avoid stimuli that may induce coughing
 smoke, cold air, exercise
 Elevate head of bed (reduce gastroesophageal
reflux)
 Bronchodilators
 Corticosteroids
 Cough suppressant (when no therapeutic
reason to stimulate cough)
 Opioid based medicine
50
Delirium
 An acute confusional state
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Disturbances of level of consciousness
Attention
Thinking
Perception
Memory
Psychomotor behavior
 Progresses rapidly over hours or days
 Early symptoms are often nonspecific
 irritability
 disturbances in the sleep-wake cycle
51
Cause of Delirium in HIV
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Infection
Metabolic
Drugs
Endocrine
Inflammation
Vascular
Malignancy
52
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
53
Introductory Case: Yared (cont.)
 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
55
Clinical Outcomes
 How bad news is discussed has implications
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patient's comprehension of information
satisfaction 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
56
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:
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Shock
Fright
Accept
Sadness
Not worried
57
Discussing Death:
Cultural Perspectives
 Some cultures believe that discussion of death
can hasten it
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African-Americans
Native-Americans
Immigrants from China, Korea, Mexico
Ethiopians?
 Need to explore individual perspectives
58
Barriers to Delivering Bad News
 People who deliver bad news experience strong
emotions
 MD reluctance to deliver bad news
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Anxiety
Burden of responsibility for the news
Fear of negative evaluation
Fear of destroying hope
Inadequacy dealing with the patient's emotions
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Patient and Clinician
Stress Related to Bad News
Clinician
Patient
Stress
Encounter
Time
60
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
61
STEP 1: Setting up the Interview
 Mental rehearsal
 Anticipate difficult emotions / questions
 Review strategy / importance of giving information
 Select appropriate setting
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Privacy
Involve significant others
Sit down
Initiate connection
Manage time constraints
62
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
63
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?”
65
STEP 5: Emotion
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Observe
Identify
Connect cause
Communicate understanding
Empathize
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“I know that this isn't what you wanted to hear”
I wish the news were better”
Reduce the patient's isolation
Validate patient's feelings
66
STEP 6: Strategy
 Develop a clear follow-up plan
 Address patient goals
 Discuss management options when patient is
ready
 Share responsibility for decision-making
67
End-of-Life Discussion
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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
68
Key Points
 Palliative care
 is integral to HIV care from the time of diagnosis
 Palliative care faces unique challenges in Africa and
must be culturally sensitive
 Management of pain and dyspnea includes both
pharmacological and non-pharmacological methods
 Pain 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
69
Key Points
 Delivering Bad News
 Giving bad news and talking about death is a
fundamental communication skill for doctors
 Exploring 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
70