Palliative Care for Patients Living with HIV/AIDS HAIVN Harvard Medical School AIDS Initiative in Vietnam M2-19-Palliative Care for patients living with HIV/AIDS-EN HAIVN Module 2, Revised April 2012

Learning Objectives By the end of this session, participants should be able to: Explain what palliative care is and why it is important Describe how to evaluate pain Explain how to treat nociceptive and neuropathic pain Describe what end of life care is and why it is important

What is Palliative Care? (1) “Palliative care is a combination of measures to relieve suffering and improve the quality of life of patients through the prevention, early detection, and treatment of pain and other physical and psychosocial problems that the patient and family are encountering.” Note that this slide is animated. Do not click through to the answer until after allowing participants the chance to answer the question. ASK participants to answer the question in the slide title. ALLOW time for a few of them to propose answers. CLICK through to the answer on the slide, and ask for a volunteer to read it aloud. EXPLAIN palliative care further: Palliative care (from the Latin palliare, to cloak) is any form of medical care or treatment that concentrates on reducing the severity of disease symptoms rather than halting or delaying progression of the disease itself or providing a cure. Source: Vietnam MOH: Guidelines on Palliative Care for Cancer and AIDS patients

What is Palliative Care? (2) The two major goals of palliative care are: 1) To relieve suffering, and 2) To improve the quality of life of the patient REFER them to Handout M2S19.1: Principles of Palliative Care so that they can look at the main principles.

PAIN Over 50% of AIDS patients in Vietnam suffer from pain – the majority of which is undiagnosed and untreated. EXPLAIN that pain is a very common symptom in HIV/AIDS patients particularly in later stages of disease and can severely affect quality of life.

Pain: Definition “the feeling of discomfort of a patient because of current or potential tissue damage or, it is an actual injury that the patient is suffering from” EXPLAIN pain further: Actual tissue damaged: From infection, inflammation, neoplasm, ischemia, trauma, invasive medical procedures, drug toxicity, etc Potential tissue damage: Recognized disease entities where no tissue damage can be demonstrated but cause pain, such as fibromyalgia. REFER participants to Handout M2S19.2: Categories of Pain for more detailed information about pain.

Etiologies of Pain in HIV/AIDS Category Type of Pain/Cause Opportunistic infections Headache Cryptococcal meninigitis TB meningitis Odynophagia Esophagitis due to Candida, HSV Abdominal pain MAC/TB Malignancies HBV, HCV Lymphoma HIV virus Distal symmetric polyneuropathy Medications d4T (peripheral neuropathy) AZT (headache) Etiologies of Pain in HIV/AIDS Pain is exacerbated by psychological and social stress EXPLAIN that etiologies of pain can be quite diverse; therefore differential diagnosis is important.

Pain Assessments Based on patient’s own report Always use same pain assessment scale to best monitor and compare the progress of pain control Most common pain assessments include: Pain Intensity Scale Wong-Baker Faces Pain Rating Scale REMIND participants how important it is to listen to the patient! REFER participants to Handout M2S19.3: Assessing Pain for further information about assessing pain.

What are Some Things to Look for When Assessing Pain? Location Type or quality of pain: sharp, dull, constant, intermittent Grade of pain Pain Scale Ability to sleep Good indicator of comfort level Effect on functioning: Ability to eat, swallow Can walk with or without assistance Response to treatment Pain medications Non-pharmacological treatment Heat, cold Acupuncture Massage Note that this slide is animated. Do not click through to the answer until after allowing participants the chance to answer the question. ASK participants to answer the question in the slide title. ALLOW time for a few of them to propose answers. WRITE down their answers on a flip chart, generating a list. CLICK through to the answer on the slide, and ask for a volunteer to read it aloud. EXPLAIN the importance of trying to obtain a precise description of the pain from the patient.

Role Play: Assessing Pain EXPLAIN that now it is time to do a role play. REFER participants to Handout M2S19.3: Assessing Pain. EXPLAIN that they can refer to it during the role play. REFER to Trainer Tool: Rotating Trio Role Plays. FACILITATE the role play based on the instructions in the Trainer Tool.

Treating Pain ASK participants “What are some principles you follow when treating pain?” ALLOW time for them to respond. USE discussion to lead into the next slide.

Principles to Follow in Pain Treatment Deliver pain relief interventions in a timely, coordinated and logical manner After pain has been treated, assess if intervention worked If not, may need to increase dose or try another therapy Pain assessments and interventions should be documented in patient’s chart so other doctors know what does and does not work EXPLAIN that is important to continuously assess response to therapy.

Categories of Therapeutics Nociceptive pain Responds well to opioids and non-opioids Neuropathic pain Responds better to adjuvant medications (antidepressants, anticonvulsants) than opioids or non-opioids REMIND participants: Nociceptive: involves pain receptors in skin, muscle, bone (somatic pain), or internal organs/hollow viscera (visceral pain) Neuropathic pain: involves nerve tissue

Easing Pain (1) Mild Pain Moderate Pain (4-6 on Severe (1-3 on 0-10 scale) Non-opioid analgesics +/- adjuvants Non-opioid analgesics Ibuprofen Aspirin Paracetamol Adjuvants Amitriptyline Gabapentin Carbamazepine Moderate Pain (4-6 on Weak opioids +/- adjuvants Weak opioid Codeine Severe (7-10 on Strong opioids with or without adjuvants Strong opioids Morphine Oxycodone EXPLAIN that the WHO ‘analgesic ladder’ guides pain treatment (as per chart above). EXPLAIN that it is important to assess the severity of pain between mild, moderate and severe pain.

WHO three-step “analgesic ladder” Easing Pain (2) WHO three-step “analgesic ladder” Pain Relief Pain persisting or increasing 3 SEVERE PAIN Strong Opioid +/- Non-opioid +/- Adjuvant Pain persisting or increasing 2 MODERATE PAIN Weak Opioid +/- Non-opioid +/- Adjuvant EXPLAIN that if pain occurs, there should be prompt oral administration of drugs in the following order: nonopioids (aspirin and paracetamol); then, as necessary, mild opioids (codeine); then strong opioids such as morphine, until the patient is free of pain. Additional drugs – “adjuvants” can help. REFER participants to Handout M2S19.4: WHO Analgesic Ladder for a list of possible drugs that can fall under each category. 1 MILD PAIN Non-opioid +/- Adjuvant Adapted from World Health Organization. Cancer Pain Relief. Geneva: WHO, 1990.

Dosing Analgesics EXPLAIN that among analgesics, opioids such as morphine have a narrow therapeutic index. Dose opioids carefully since overdose will lead to toxicity but underdosage will be ineffective. Analgesics like all other drugs have side effects, dose carefully to attain useful effect

Difference Between Oral and Intravenous Opioids Oral, immediate release opioids have a 30 minute onset of action Immediate release opioids last 3-7 hours in the blood IV opioids have a 5 – 10 minute onset of action EXPLAIN that IV opioids have faster onset of action.

What’s Wrong with the Way this Analgesic is Being Given? Note that this slide is animated. Ask participants the question on the slide BEFORE clicking through to the answer. ASK participants the question in the title of the slide. ALLOW time for them to respond. CLICK through to the answer below the chart, after they have had a chance to offer answers. REMIND them of the importance of making sure you are giving the pain medications at the appropriate intervals……most of the time it is every 3 – 4 hours. Pain Doses are not being given frequently enough Analgesic wears off, and patient feels pain until next dose is given

Give Opioids at Right Frequency to Prevent Breakthrough Pain EXPLAIN that to maintain freedom from pain, drugs should be given “by the clock”, that is every 3-4 hours, rather than “on demand”. Most short-acting opioids are given every 3-4 hours to maintain pain relief effect

What if Correct Interval but Patient Still Has Pain? Breakthrough pain Note that this slide is animated. Ask participants the question on the slide BEFORE clicking through to the answer. ASK participants the question in the title of the slide. ALLOW time for them to respond. CLICK through to the answer below the chart, after they have had a chance to offer answers. EXPLAIN that severe intermittent flares of pain occurring in a patient on analgesic medications are called breakthrough pain because the pain "breaks through" the regular pain medication. To treat break through pain give 10% of daily dose of opioids: every 1 – 2 hours for immediate release oral opioids OR every 30 – 60 minutes for subcutaneous or intravenous opioids Should NOT be substituted for opioid already being given every 3 – 4 hours

Example: Calculating Breakthrough Pain Dosages A patient is receiving oral morphine 10mg, every 4 hours What is her total daily dose? Total daily dose is 10 mg x 6 = 60 mg What is her breakthrough dose? Breakthrough dose: 10% x 60mg = 6 mg every 2 – 4 hours as needed Note that this slide is animated. Ask participants the questions on the slide BEFORE clicking through to the answers. ASK participants the first question on the slide. ALLOW time for them to respond. CLICK through to the answer. ASK participants the second question on the slide. MAKE SURE that participants understand before moving on to the next slide.

Tolerance to Opioids Tolerance develops with time in most patients requiring dosage increases Unlike NSAIDS and most adjuvants, there is no maximum dosage for opioids. REVIEW the concept of tolerance with participants. ASK for a volunteer to define it. ALLOW time for him/her to respond. PROVIDE answer, as needed: Tolerance: phenomenon in which longer exposure to a drug results in diminution of the effect of this drug or need for a higher dose to reach the same effect.

Equianalgesic Dosing of Opioids Sometimes side effects, lack of effectiveness or tolerance requires a change from one opioid to another When changing to a different opioid one must refer to an opioid table to determine the appropriate dose to start with This is called the “equianalgesic dose” DEFINE the term again, just for clarity. Equianalgesic: producing the same degree of analgesia. REFER participants to Handout M2S19.5: Equianalgesic Dosing of Opioids for further information.

Non-Pharmacologic Pain Treatments Acupuncture Heat or cold packs Massage Deep breathing exercises Gets patients and families involved in helping with pain control EXPLAIN that alternative/complementary therapy methods can help. Different patients can have varied responses to different treatments. What works for one patient might not work for another, it’s a matter of trial and error.

Case Study: Thuy (1) Your patient, a 37 year-old female named Thuy, is HIV positive and has been on ART for the last 6 months with nearly perfect adherence She presents with aching right hip pain which worsens at night no history of trauma or accident Examination revealed tenderness over the right proximal femur ASK for a volunteer to read the case study on the slide.

Case Study: Thuy (2) What kind of pain is Thuy having? She is having nociceptive pain as she describes it as aching pain What steps would you take to further evaluate and treat her? Treatment would be a nonsteroidal anti-inflammatory drug (i.e. ibuprofen, diclofenac) Note that this slide is animated. Click through the bullet points according to the instructions below. ASK participants the first question. ALLOW time for them to answer. CLICK through to show them the answer, then click through to the second question. CLICK through to show them the answer, then move on to the next slide.

Case Study: Thuy (3) 6 months later, Thuy returns with burning and shooting pain in both legs Pain is intermittent, examination of lower extremities was not remarkable She takes D4T 40 mg plus 3TC/EFV She is also on the continuation phase of TB treatment Her weight is 55kg

Case Study: Thuy (3) What do you think could be going on with Thuy? What kind of pain is she having? What are the possible causes of her pain? What steps would you take to further evaluate her? Do you think paracetamol would help? FACILITATE a discussion with participants based on the questions on the slides. GO THROUGH each of the questions, one by one. EXPLAIN , at the end, as needed: Pain now appears neuropathic, as it may have resulted from nerve dysfunction probably caused from the ARV D4T, which is a common side effect. However, it also may be caused by HIV, or both D4T and HIV infection. Thuy appears to have a classical case of peripheral neuropathy, as the pain is described as a burning, shooting pain in both legs. Neuropathy can also be due to the INH in the TB continuation phase which can be managed with vitamin B6 or pyridoxine. Treatment options include ART regimen change, specifically substitute another ARV for D4T, and treat pain with amitriptyline and/or nonsteroidal anti-inflammatory drugs.

HIV-Related Symptoms Other than Pain

Prevalence of Symptoms in Patients with AIDS* Fatigue Weight loss/anorexia Pain Anxiety Insomnia Cough Nausea/ vomiting Depression/ sadness Dyspnea/ respiratory symptoms Diarrhea Constipation 48-77% 31-91% 29-76% 25-40% 21-50% 19-36% 17-43% 15-40% 15-48% 11-32% 10-29% EXPLAIN that these symptoms can severely affect quality of life. REMIND participants that they should not forget to ask questions about these symptoms while taking a history. * Based on several published descriptive studies of patients with AIDS, predominantly in patients with late-stage disease, Europe and North America, 1990-2002.

Addressing HIV-Related Symptoms Treatments can be: disease-specific (e.g. ARV) and/or symptom-specific (e.g. anti-emetics, anti-histamines) Effective treatment of these symptoms: Reduces suffering Improves quality of life Improves ARV adherence Improves clinical outcomes EXPLAIN that determining the etiology of symptoms is important for providing appropriate treatment

Symptoms Addressed in 2006 Palliative Care Guidelines Nausea / vomiting Diarrhea Constipation Odynophagia Dyspnea Cough Weakness / fatigue Fever Insomnia Agitation / delirium Depression Anxiety Pruritus Bed sores EXPLAIN that the Vietnamese MOH Palliative Care Guidelines give instructions on how to treat common symptoms encountered by HIV and cancer patients. REFER participants to Handout M2S19.6: Addressing HIV-Related Symptoms for further information.

End of Life Care

Overview of End of Life Care What is End of Life Care? Provision of care during the final days and hours of life How is it Different from Palliative Care? End of life care is only given at the very end of a patient’s life with the goal of helping the patient reach death with dignity and with as little pain as possible Note that this slide is animated. Do not click through until after giving participants time to answer each question. ASK participants the first question on the slide. ALLOW time for them to answer. ASK participants the second question on the slide. EXPLAIN further as needed: End of life care: the provision of care during the final days and hours of life. End of life care is different from palliative care mostly in terms of duration and intensity. Palliative care can begin when the patient is first diagnosed; it is a process of “palliating” the patient’s pain and symptoms so that he/she can live a better life. End of life care, however, begins once the patient is very near death – at the very end of life. It is a matter of making the patient as comfortable as possible. It is intense care, over the course of a shorter time period than palliative care.

Ways to Provide Support at the End of a Patient’s Life Provide emotional and spiritual support Encourage patients to discuss feelings Listen attentively, be empathetic Respect patients’ decisions Provide grief and bereavement support Once patient dies, family will need support Provide bereavement counseling REVIEW the slide with participants. REFER participants to Handout M2S19.7: Providing Support as part of End of Life Care for further information.

Key Points The two major goals of palliative care are to relieve suffering and to improve patient quality of life Assess pain based on patient’s own report and standard pain assessment Important to understand pain in order to know how to treat effectively Emotional and spiritual support are important parts of palliative care

Thank you! Questions?