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

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1 Unit 18 HIV Care and ART: A Course for Healthcare Providers
Palliative Care Unit 18 HIV Care and ART: A Course for Healthcare Providers Unit 18 should take approximately 1 hour and 45 minutes to implement: Step 1: Overview of Unit Learning Objectives (Slide 2) – 5 minutes Step 2: Palliative Care Overview (Slides 3-23) – 25 minutes Step 3: Palliative Care for Painful HIV Syndromes (Slides 24-53) – 45 minutes Step 4: Giving Bad News (Slides 54-68) – 25 minutes Step 5: Key Points (Slides 69-70) – 5 minutes

2 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 Step 1: Overview of Unit Learning Objectives (Slide 2) – 5 minutes The aim of this unit is to provide an overview of palliative care and how healthcare professionals can provide helpful and effective palliative care to patients and their families.

3 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. Step 2: Palliative Care Overview (Slides 3-23) – 25 minutes Throughout this lecture, we will follow the disease course and medical encounters of Yared to demonstrate the function of palliative care at various stages of HIV illness. What is your approach to this patient? What further information do we need and how should we proceed? This is a patient with history of stage IV illness, now on his second regimen because of immunologic treatment failure. His current chief complaint of nausea and diarrhea is probably related to ARV drugs, but he also has signs consistent with clinical treatment failure as we will see. WHEN PATIENTS ON ART DEVELOP NEW SYMPTOMS OR SIGNS, WE NEED TO ASK TWO IMPORTANT QUESTIONS: does this represent a drug side effect ? does this represent treatment failure / new opportunistic infection? For this patient we need more information: Ask about the character, duration, and associated features of the diarrhea. Does this diarrhea represent a new OI? Is it a drug side effect? (The patient states that the nausea and diarrhea since starting Nelfinavir; he reports no associated symptoms aside from fatigue) As with any patient, we should ask about adherence. Also ask whether the patient is taking ddI properly on an empty stomach. (Yes, the patient is taking his ART and Bactrim correctly) Recall that this drug regimen however is associated with substantial GI side effects. Nelfinavir is infamous for diarrhea. Moreover, recall that ddI must be taken on an empty stomach, while AZT-related nausea can be improved by taking with meals. Any dose adjustments necessary given this man’s weight? (ddI: 200 bid ->125 bid) Previous ARV regimen and laboratory history? NVP/d4T/3TC and CD4 70->150->80->80 -> regimen change) Current physical exam and laboratory? current labs: CD4 50 cell/mm3 ; normal LFT and chemistry

4 Introductory Case: Yared (cont.)
Alert and oriented, but appears fatigued and chronically ill T HR BP 90 / 70 47 kg (7 kg weight loss since last visit) Pale conjunctivae White plaques on soft palate Normal exam otherwise What are the significance of these findings? Are these signs new for this patient? Comparing these findings with baseline physical exam, is critical for helping determine whether these findings are due to treatment failure, and emphasizes the importance of clear documentation. This patient’s usual blood pressure is between 120/80 and 130/85 and heart rate At the last clinical visit there was no documented thrush or pale conjunctivae. His ideal body weight is 55kg.

5 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? Audience brainstorm activity : formulating a problem list for this patient. Palliative care needs should overlap with any comprehensive medical problem list. As we will see in the subsequent slides, palliative care is simply interventions aimed to prevent or relieve patient suffering.

6 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 Palliative care constitutes interventions - both preventive and reactive - aimed to improve quality of life in the setting of a potentially life-threatening illness such as HIV. It involves early identification, accurate assessment, and treatment of a variety of problems and should be viewed as part of a comprehensive care plan. Ask participants for an example of palliative care in everyday Ethiopian medical practice?`

7 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 These principles apply from the time of diagnosis until death. Palliative care affirms life by acknowledging death as a normal process and emphasizes the importance of family needs. Without anticipating death, we can not adequately deal with it. Ask participants how Ethiopians support each other at times of death?

8 Pre-HAART Palliative Care Model
Therapies to modify disease (curative, restorative intent) Hospice This is a picture of how palliative care fits into the treatment model of HIV before HAART was available. During the 80’s and early 90’s palliative care was conceived as separate from curative care, and only happened after all treatment options had failed. Palliative care was synonymous with hospice care. The patient had to have six or less months to live in order to qualify for this care. This care doesn’t work very well for people with HIV/AIDS today. Diagnosis 6m Death Bereavement Care

9 The Role of Palliative Care in HAART Era
Therapies to modify disease (curative, restorative intent) Life Closure Actively Dying This picture shows the integration of palliative care early in the disease process, and represents the current model of palliative care in HIV management. Early in the disease process, curative treatment is emphasized, but palliative care is still important to alleviate the side effects and to treat other conditions that impact quality of life such as neuropathy, depression etc. As the disease progresses, the balance shifts towards ensuring the patient’s comfort and quality of life, as well as supporting the patient’s family and friends in caring for the patient. Diagnosis 6m Death Palliative Care: interventions intended to relieve suffering and improve quality of life Bereavement Care

10 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 reactions HIV-related cancers still occur Psychological and spiritual needs persist A common misconception in HIV medicine is that the use of HAART makes palliative care unnecessary. While ART has substantially reduced the morbidity and mortality associated with AIDS, HIV patients continue to experience suffering. Indeed, palliative care is an essential component of HAART, as many patients will require a variety of interventions to address complications of treatment failure, adverse drug reactions, cancers, and psycho-social challenges related to HIV. Ask how many participants have seen ART failure or treatment related adverse reactions in Ethiopia?

11 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 Why is palliative care important in HIV/AIDS care? Palliative care is an important component of care for any medical condition. Palliative care includes the management of symptoms such as fatigue, dyspnea, and neuropathic pain, and treatment of drug side effects such as nausea, vomiting, and diarrhea. Palliative care also addresses psychosocial needs, for example depression. By addressing these issues, the role of palliative care may extend beyond the individual to reach the community by reducing the emergence of drug resistance. Ask participants how they as Ethiopian physicians deal with end of life preparation for their patients?

12 Introductory Case: Yared (cont.)
Nausea Diarrhea Fatigue Substance dependence Unemployment Lack of social support What are this patient’s palliative care needs? Nausea- assessment (eg serum chemistry / LFT) and management (eg antiemetic) Diarrhea - assessment (eg stool study) and management (eg antidiarrheal) Fatigue - assessment (eg CBC) and management (eg volume resuscitation / transfusion) Substance dependence and psychosocial issues - referral ?(AIDS resource center) – what options do we have in Ethiopia?

13 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. Brainstorm activity: Ask participants the following questions: What are the barriers to palliative care in the African context? For Yared? This case demonstrates how long travel distance can be a barrier to palliative care.

14 Palliative Care in Africa
Palliative care models for developed countries may not work in Africa Feasibility ? Accessibility ? Sustainability ? Cultural diversity ? Palliative care requires an infrastructure that supports a complex interdisciplinary team including the individual, family, caregivers and service providers Such an approach is virtually non-existent in Africa because of issues of feasibility, accessibility, efficacy, and the challenges of addressing a very diverse population. What is the current model of palliative care in Ethiopia?

15 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 In addition to the questions raised on the previous slide, palliative care in Africa faces some specific challenges. For example, late disease presentation. Symptom management is more effectively accomplished when started early; however, because of limited access to care, long travel distances, and distrust of western medicine, palliative care in Africa may be challenging. Moreover, inadequate medical equipment and lack of trained personal make accurate assessment of palliative care needs very difficult. Also, poor availability of necessary drugs in palliative care present a challenge, in particular opioids. Do all of the ART clinics in Ethiopia have access to opioids?

16 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 Palliative care in Africa encounters not only logistical challenges but cultural ones as well. An appropriate palliative care model needs to be culturally specific. For example, what constitutes a “good death” in Africa – that is, a comfortable peaceful dying process both physically and spiritually – may vary substantially from one culture to the next in Africa. Can anyone think of an example? In some cultures, for instance, even talking about death or bad news may be viewed as a cause for terminal illness. Is this the case in Ethiopia? Moreover, clinicians in some countries feel that discussing death is not compatible with their perceived responsibilities. The appropriate model of palliative care needs to be determined locally. Labeling patients as terminally sick in some places may result in total isolation of the patient from their community or from necessary medical/palliative care. Can anyone share an example of how stigma has adversely affected their patient?

17 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 We need a place to provide palliative care, then we need to focus not only on symptom management, but financial and other psychosocial factors. For example: food is critical. ART will not work if basic needs have not been met. Although provision of HAART is set to expand, access will still be limited with respect to the total number of people with HIV disease who need antiretroviral therapy, thereby continuing the need for traditional palliative end-of-life care

18 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 Home based-care or home-palliative care is the predominant model in Africa. Successful implementation of this model is met by several challenges. It is difficult for palliative care providers to enter the home of a patient without arousing some “suspicion” from neighbors; a response rooted in the stigma of HIV in Africa.

19 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 What is the status of palliative care in Africa? Unclear, but under investigation. Shown here is some background on a WHO project started in The first phase of this project included surveillance and needs assessment. Reference: Sepulveda et al. Quality care at the end of life in Africa. BMJ 2003: 327; 209

20 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 This survey revealed that three out of four patients with HIV in Ethiopia were dying in pain. Why is pain so common during the dying process in Ethiopia? Does this survey suggest that pain is under-treated in Ethiopia? The other countries (except Tanzania) also reported pain as the number one problem, but with less overall frequency compared to Ethiopia. Sepulveda et al. Quality care at the end of life in Africa. BMJ 2003: 327; 209

21 End of Life Experience in Ethiopia (2)
Patient needs were not met in most cases Relief of pain Relief of symptoms Burden on family Education interruption Financial constraints Emotional (anxiety, fear, sadness) Physical This survey revealed that, in most cases, patient needs were not met – including pain and other symptom relief. Moreover, the terminal illness resulted in a substantial burden to the family, in financial, emotional, and physical terms. How many people have taken care of a family member or friend who died of AIDS? 80% patients die under the care of a spouse or child In some cases, education of children is actually interrupted as a result of the need to take care of a dying parent. The burden to the family emphasizes the need for development of assistance programs. Sepulveda et al. Quality care at the end of life in Africa. BMJ 2003: 327; 209

22 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 This WHO survey also revealed important clinician and patient barriers to implementing palliative care. What do you think of this reluctance? Can anyone share a story about the consequence of stigma in Ethiopia? Sepulveda et al. Quality care at the end of life in Africa. BMJ 2003: 327; 209

23 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 The challenges to palliative care in an Ethiopian and Africa context are complex. Successful development of palliative care in Africa should include the following: Will require a clearer understanding of local needs, utilizing a flexible model. Should incorporate home-based care, with strong referral mechanisms, and address needs at all stages of disease. Efforts should be made to develop simple protocols for lay people to help deliver palliative care. Finally, continued advocacy for drug access, funding, formation of working committees, capacity building for advocates, and implementation of existing policies remains paramount.

24 Introductory Case: Yared (cont.)
Yared returns to the clinic 4 months later He is very fatigued and has developed burning lower extremity pain. Step 3: Palliative Care for Painful HIV Syndromes (Slides 24-53) – 45 minutes What accounts for this patient’s pain? How will you assess and manage this pain? This patient has developed peripheral neuropathy secondary to ddI. The differential diagnosis includes HIV related peripheral neuropathy, which would signify HIV disease progression and would be consistent with the earlier concern of treatment failure. Note the increasing time between visits- is he taking his medicine??? To evaluate this patient we need more history. Ask about the duration of symptoms, onset, character, and location. The patient reports gradual onset, constant, burning and tingling of both feet Then we need a physical examination This reveals diminished pain and temperature sensation on both feet and diminished ankle reflexes bilaterally Management options: Change ddI to different NRTI (eg TDF) or reduce dose from 400mg to 250mg /day; Provide symptom relief NSAIDS, APAP

25 Advanced HIV: A Spectrum of Symptoms
Pain Diarrhea, nausea, vomiting Fever Dyspnea, cough Fatigue Orthopnea, PND Skin disorders Confusion Depression, anxiety, fatigue, fear Despite the constraints of palliative care in Africa, effective symptom management is possible. The following section will introduce some tools useful in the assessment and treatment of pain, dyspnea, cough, and delirium. HIV patients develop a broad spectrum of symptoms; we will focus on a couple of the more common ones.

26 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 Pain is difficult to define and even more difficult to objectively measure

27 Pain Syndromes in HIV Abdominal pain Peripheral neuropathy
Oropharyngeal pain Headache pain Post-herpetic neuralgia Musculoskeletal pain

28 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

29 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 Because DSSP is the most common form of neuropathy, it is described here in more detail. Characterized by distal axonal degeneration. These processes may be mediated by HIV itself or by indirect cytotoxic immune mechanisms.

30 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 Symptoms are prominent in soles and toes because the damage is most pronounced in nerves most distant from the cell bodies

31 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) This problem is relevant to Ethiopia because of the widespread use of d4T. This condition may be permanent even after stopping the NRTI. In fact, sometimes cessation of the NRTI drug may cause intensification of symptoms for 6-8 weeks post-withdrawal termed the 'coasting period‘.

32 NRTI associated DSSP (2)
Early recognition is critical NRTI dosing May be dose-reduced May 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 But keep in mind that NRTI related DSSP may require NRTI dose adjustment or even discontinuation if grade III toxicity occurs.

33 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) Neuropathic pain is an under-recognized and under-treated complication of HIV infection. Assessment of the severity of pain on a scale of 1-10 can help the clinician and patient monitor the progress of the illness at subsequent visits.

34 Pharmacologic Management of Neuropathic Pain
Mild pain: Non-opioid analgesics Ibuprofen mg 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 First, ART use may improve primary HIV related DSSP. Symptomatic treatment Directed at irritative symptoms such as pain and paresthesia. It is not effective against deficits of nerve function including sensory loss or weakness. Adjuvant analgesics, including TCAs and antiepileptics, are effective in other neuropathic pain states such as diabetic neuropathy. (amitriptyline was not superior to placebo in a study of HIV neuropathic pain) Recall some of the major toxicities of these medicines: Ibuprofen can cause PUD and renal failure (especially in the setting of volume depletion) Tylenol can cause liver toxicity in high doses (>4 gm/day; >2 gm/day in alcholics) TCA have anticholinergic effects, such as dry eyes, dry mouth, constipation, urinary retention, orthostatic intolerace, and in overdose can cause cardiotoxicity (prolonged QT syndrome / torsade de pointes)

35 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 Next step? Escalate according to WHO ladder. Add APAP+Codeine +/- TCA. Recall that NRTI related neuropathy may take 4-6 weeks to improve, or it may not improve at all. Consider switching ddI to TNF (if available) or back to 3TC (this option is reasonable despite prior history of treatment failure on this drug because the patient probably has 184 mutation conferring resistance to 3TC, but which enhances activity to AZT)

36 WHO 3-step Analgesics Ladder
3 severe Morphine Hydromorphone Methadone Levorphanol Fentanyl Oxycodone ± Adjuvants 2 moderate A/Codeine A/Hydrocodone A/Oxycodone A/Dihydrocodeine ± Adjuvants 1 mild ASA Acetaminophen NSAIDs ± Adjuvants Clinicians work to escalate analgesics, either in dose or from one step to the other, and this is a useful framework for decision making.

37 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”. This patient is very sick. We need to quickly assess and manage this patient’s dyspnea.

38 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 Respiratory rate and O2 saturation are important indicators of gas exchange (and are usually accompanied by dyspnea when abnormal), but they may not be sensitive markers of the patient’s subjective sense of dyspnea.

39 Causes of Dyspnea in HIV
Opportunistic infections Pulmonary malignancies Pneumothorax Asthma Bronchiectasis Pulmonary embolism Severe anemia Congestive heart failure Debilitation / severe wasting Dyspnea is a cardinal symptom of pulmonary complications in people with AIDS Opportunistic infections: Bacteria (Streptococcus, Pseudomonas, etc) Viruses (Influenza, VZV, etc) Fungi (Pneumocystis jeroveci, Histosplasmosis, etc) Mycobacterium (TB)

40 Assessment of Dyspnea History Physical exam Diagnostic testing
Onset, duration, PCP-prophylaxis Physical exam Vitals, Pulmonary, Cardiac, Extremities, etc Diagnostic testing CXR, CBC, Chemistry Prompt diagnosis Ensure best chance of curative treatment

41 Return to Case Study Onset of dyspnea was gradual, and associated with dry cough and fever. He stopped taking Bactrim one month ago T 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. Significance of MCV? - patient probably adherent to AZT.

42 Introductory Case: Yared (cont.)
© Slice of Life and Suzanne S. Stensaas

43 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. Aside from disease-specific therapy, what other interventions can we provide to help relieve this patient’s dyspnea?

44 Nonpharmacologic Treatment of Dyspnea
Position patient for comfort Prop 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 Like the management of pain, relief of dyspnea involves non-pharmacologic methods.

45 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

46 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

47 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 Bronchodilators Diuretics Steroid Antibiotics

48 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

49 Cause of Cough in HIV Inflammatory processes caused by infections
Tuberculosis Bacterial / fungal pneumonia Bronchial lesions Lung parenchymal disease

50 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

51 Delirium An acute confusional state
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 Not only is this is an important sign often associated with severe, systemic illness, delirium may contribute to unnecessary harm to the patient (eg fall injuries) and should be assessed and managed with care.

52 Cause of Delirium in HIV
Infection Metabolic Drugs Endocrine Inflammation Vascular Malignancy

53 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 In general, diazepam worsens delirium unless anxiety is contributing significantly.

54 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. Step 4: Giving Bad News (Slides 54-68) – 25 minutes Ask participants: How will you tell the family that the patient is dying?

55 Bad News Physicians are continuously faced with the challenge of telling patients and their families bad news This section introduces a tool that may help deliver bad news in a sensitive, effective manner, and help reduce physician anxiety. What are some examples of bad news in medicine? Ask the audience about their experience delivering and receiving bad news.

56 Clinical Outcomes How bad news is discussed has implications
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

57 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 In your experience, how have patients with cancer or other life-threatening illnesses reacted to their initial diagnosis?

58 Discussing Death: Cultural Perspectives
Some cultures believe that discussion of death can hasten it African-Americans Native-Americans Immigrants from China, Korea, Mexico Ethiopians? Need to explore individual perspectives Even though we have research to guide us in understanding different cultural reactions to bad news, it is important to not make assumptions about people based on their ethnicity or culture. Some feel that if a patient is told they are dying, they will give up hope and will not fight their illness. In some cultures, one of the roles of a clinician or healer is to speak in a positive way. This does not mean these patients are “in denial” about the finiteness of life. They just have a different perspective on dealing with illness. A useful question to ask all patients, one that may help to get at this issue is: “If someone in your family were to be seriously ill, how would you want the doctors to handle it? Would you want to be told?” It can also be helpful to provide information in an indirect way, as if discussing someone else. For example, “Some people who have this illness like to prepare for the worst by getting their affairs in order.”

59 Barriers to Delivering Bad News
People who deliver bad news experience strong emotions MD reluctance to deliver bad news Anxiety Burden of responsibility for the news Fear of negative evaluation Fear of destroying hope Inadequacy dealing with the patient's emotions

60 Patient and Clinician Stress Related to Bad News
The stress clinicians experience when they give bad news has a different time frame than the distress patients experience. The clinician’s stress peaks during the encounter, when the bad news is delivered. The patient’s stress peaks after the encounter. Why is this mismatch in timing of stress important to be aware of? Ask participants: When have you had a stressful time talking with a patient? Encounter Time

61 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 The following few slides provide a useful tools for delivering bad news.

62 STEP 1: Setting up the Interview
Mental rehearsal Anticipate difficult emotions / questions Review strategy / importance of giving information Select appropriate setting Privacy Involve significant others Sit down Initiate connection Manage time constraints You need to prepare for the meeting. Make sure you have accurate information, and that you understand the information. Mentally rehearse how you will convey this information in a logical, sensitive way. Anticipation will help you to stay on task when talking about bad news. Appropriate setting Make sure that the patient’s support system has the opportunity to join the discussion. Often, the patient’s family or friends will help interpret and remember the information much better than the patient themselves.

63 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

64 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?” Never assume that the patient does not want to know bad news Ask the patient how much they want to know. This demonstrates respect of the individual. Ask participants: Have you found other effective ways of finding out how much the patient wants to know? What has worked well, in your experience?

65 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?” The next step is to communicate the news, to whatever extent that the patients wants to know.

66 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 isolation Validate patient's feelings After sharing the news, be prepared to respond to patient’s emotions (e.g. shocked and speechless, or very matter of fact and unconcerned) Showing that you are sensitive to their response demonstrates that you are paying attention to how the news is affecting her. Ask participants: What are some other ways you could respond to the patient’s emotions in a sensitive manner?

67 STEP 6: Strategy Develop a clear follow-up plan
Address patient goals Discuss management options when patient is ready Share responsibility for decision-making As we saw in an earlier slide, sometimes people go into shock when they hear bad news and don’t start processing it until after they have left the appointment. They might have lots of questions or concerns that they did not think to bring up during the conversation. Giving patients permission to call you or providing another resource for information is one way to deal with this. Or you can make an appointment with the patient in the near future. This might be a good place to stop and do a demonstration of the protocol, either with trainers or participants playing the parts of clinician and patient. See Role Plays Section for suggestions on how to do this.

68 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 Talking about death is difficult, but it is part of effective palliative care and HIV medicine. SPIKES principles can allow health care workers to communicate more effectively and comfortably about death.

69 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 Step 5: Key Points (Slides 69-70) – 5 minutes

70 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


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