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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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Introductory Case: Yared (cont.)
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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Introductory Case: Yared (cont.)
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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Introductory Case: Yared (cont.)
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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Return to Case Study
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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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”.
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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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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.
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Introductory Case: Yared (cont.)
© Slice of Life and Suzanne S. Stensaas
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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.
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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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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
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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