2                                                   Managing                                                   people with...
MANAGING PEOPLE WITH HIV INFECTION               29In summary, develop a healthy, positive lifestyle.    2-7 Why is it imp...
30     ADULT HIVlatent phase look after their health and          4. Providing protein with fish, eggs and meatwellbeing. ...
MANAGING PEOPLE WITH HIV INFECTION           31serious side effects. They may also interfere         these immunisations a...
32   ADULT HIVwhere poverty, gender inequality, stigma and     2-22 Which community membersdiscrimination are common and H...
MANAGING PEOPLE WITH HIV INFECTION         33suffering. It remains one of the most difficult    surrounding sex and sexual...
34    ADULT HIVCOUNSELLING                                          speak about their worries and fears and obtain        ...
MANAGING PEOPLE WITH HIV INFECTION          35 Effective communication is a combination of             2-37 What are commo...
36    ADULT HIVattaches to CD4 cells and kills them. As a           each year by approximately 25 to 50 cells/μl.result th...
MANAGING PEOPLE WITH HIV INFECTION           37 There is no need to routinely measure viral load in   2-49 Where should te...
38    ADULT HIV4. Supporting the patient as well as family         6. Manage factors that aggravate pain such as   and fri...
MANAGING PEOPLE WITH HIV INFECTION           392-60 How is morphine used?                         2-62 What other forms of...
40   ADULT HIVThe question that must always be asked is ‘will   2-70 Do the carers need care themselves?this make a differ...
MANAGING PEOPLE WITH HIV INFECTION         415. What is safer sex?                               5. What is the value of m...
42    ADULT HIV4. What is active listening?                      2. Could the hospice advise                              ...
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Adult HIV: Managing people with HIV infection


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Adult HIV was developed by doctors and nurses with wide experience in the care of adults with HIV, under the auspices of the Desmond Tutu HIV Foundation at the University of Cape Town. It covers: introduction to HIV infection, management of HIV-infected adults at primary-care clinics, preparing patients for antiretroviral (ARV) treatment, ARV drugs, starting and maintaining patients on ARV treatment, opportunistic infections

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  1. 1. 2 Managing people with HIV infectionBefore you begin this unit, please take the 3. Managing patients with symptomatic HIVcorresponding test at the end of the book to infectionassess your knowledge of the subject matter. You 4. Preparing patients for antiretroviralshould redo the test after you’ve worked through treatmentthe unit, to evaluate what you have learned. 5. Managing patients on antiretroviral treatment Objectives 6. Providing terminal care to patients with terminal AIDS When you have completed this unit you 2-2 What are the goals of managing people should be able to: who have asymtomatic HIV infection? • Manage a well patient with 1. Keeping them well for as long as possible asymptomatic HIV infection. 2. Helping them live a normal, healthy • List ways of developing a healthy lifestyle. lifestyle with a positive attitude • Describe ways the community can play 3. Preventing them spreading HIV infection an important role in supporting people to others with HIV infection. • Provide counselling for people with HIV infection. 2-3 What is the management of well • Monitor the CD4 count. people with asymptomatic HIV infection? • Provide care to patients terminally ill It is important that attention is paid to the with AIDS. following: 1. Education about HIV infection and AIDS 2. Practising safer sexGENERAL MANAGEMENT 3. Taking a good, balanced diet 4. Exercising regularly 5. Having adequate rest2-1 What are the phases of managing 6. Developing a positive outlook on lifepatients with HIV infection? 7. Avoiding smoking, drinking excess alcohol1. Managing patients with acute or abusing drugs seroconversion illness 8. Getting emotional support and counselling2. Managing well people in the asymptomatic if needed (latent) phase of HIV infection 9. Providing good primary healthcare
  2. 2. MANAGING PEOPLE WITH HIV INFECTION 29In summary, develop a healthy, positive lifestyle. 2-7 Why is it important for an HIV-This is a very important part of managing a positive person to practise safer sex?person with HIV infection. Each person with 1. To prevent spreading HIV to others.HIV infection needs a wellness programme. 2. To avoid reinfection with HIV. Being HIV positive does not prevent further infection A healthy lifestyle is very important for people with other strains of HIV. The progression who are HIV postive. to AIDS is more rapid with multiple HIV infections.2-4 What is a wellness programme? It is essential that HIV-positive people practiseThis is an active programme to encourageHIV-infected people to remain physically safer sex.and emotionally well for as long as possible.A wellness programme promotes a healthy 2-8 What is safer sex?lifestyle. Both regular follow-up by an HIV The only way of totally preventing the sexualclinic and support from the community are transmission of HIV is to avoid sex. However,important. The media (radio, TV, newspapers, the risk of HIV infection can be greatlymagazines, books) also have a role to play in reduced by changing sexual practices (saferpromoting wellness. sex). Condoms must be used every time the person has sex. Avoid multiple partners.2-5 Why is education about HIV Anal sex is particularly dangerous. Althoughinfection and AIDS important? oral sex is safer, it is still a recognised way ofThe most important step in helping people transmitting HIV.with HIV infection is to enable them to learn The ‘ABC’ of safer sex is Abstinence (no sex),about and understand their disease. They need Be faithful (one partner only) and Condomsto feel that they are still in control of their own (always use a condom).lives and can play an active role in managingtheir illness. They must be empowered to 2-9 Are condoms adequatemake the best decisions for themselves. A for contraception?good understanding of HIV infection andAIDS helps to reduce their anxiety and Condoms are only partially effective asdevelop confidence and hope. contraception. Therefore some other form of contraception must be used as well. Progesterone injections (e.g. Petogen three- Knowledge and understanding is power. monthly or Nur-Isterate two-monthly) are best as some medication taken by HIV-2-6 What education is needed? infected people may interfere with oral contraceptives (the pill).1. The natural history of HIV infection2. How to prevent infecting others Any HIV-infected woman planning to fall3. Ways of strengthening the immune system pregnant should get advice from an HIV clinic. through healthy living4. The early symptoms and signs of HIV 2-10 Why is diet, rest and infection exercise important?5. What can be offered with antiretroviral treatment Having a good diet, adequate rest and keeping fit with moderate exercise help to maintain the normal function of the immune system. It is important that people in the
  3. 3. 30 ADULT HIVlatent phase look after their health and 4. Providing protein with fish, eggs and meatwellbeing. This will prolong the period of (expensive) or beans, peas, lentils or soyaasymptomatic HIV infection. products (cheaper). 5. Using only a little fat and salt.2-11 Why is it important to 6. Buying fruit in season (expensive) or freshmaintain normal body weight? vegetables (cheaper). Do not overcook vegetables as this damages vitamins.Because marked weight loss and poor nutrition 7. Use a variety of foods mixing starch,are associated with a rapid progress to AIDS. protein, vegetables and fruit. Cultivating aMalnutrition weakens the immune system. vegetable garden can save costs.Weight loss in HIV-infected people may bedue to: A good diet need not be expensive and helps to1. Poverty improve and maintain the immune system.2. Depression3. Poor appetite due to illness NOTE Good trials of dietary supplements4. Oral and oesophageal candidiasis are still needed. There is little scientific5. Chronic diarrhoea evidence that supplementation with6. Gut malabsorption specific nutrients is of benefit.7. Tuberculosis 2-13 Can HIV infection be managedUnintentional weight loss is often an early without antiretroviral treatment?sign of symptomatic HIV infection. It isimportant to maintain normal body weight It is very important for all HIV-infected peoplefor as long as possible. to understand that every effort must be made to prolong the latent phase and delay the onset2-12 What dietary advice should be given? of symptomatic HIV infection. Antiretroviral treatment is only recommended when HIVA balanced diet is important to provide becomes symptomatic.sufficient amounts of carbohydrates, fatsand protein. A diet containing an adequate Many people with AIDS do not yet havesupply of vitamins and trace elements may be access to antiretroviral treatment and havesupplemented with a daily multivitamin pill. to be managed symptomatically. Many of theA good calorie and protein intake helps to symptoms of AIDS can be relieved and HIV-prevent weight loss. associated infections can be treated. However, antiretroviral treatment is the only effectiveFirst the person’s present diet and pattern of management of AIDS and offers the only hopeeating should be reviewed. Then the person of prolonging a good quality of life.can be advised on local, affordable foods whichwould improve the diet. Small frequent meals 2-14 Are herbal medicationsare best. Alcohol intake should be reduced of value in HIV infection?or stopped and smoking discouraged. Thenutritional value of meals can be improved by: Many plants have an effect on the immune system. Some are believed to be helpful while1. Using starchy foods as the basis of most others have been shown to depress the immune meals to provide calories, e.g. porridge, system. However, only very limited clinical samp (mealies), rice or potatoes. trials have been conducted, with mixed results.2. Adding 1–2 teaspoons of vegetable oil, It is hoped to identify herbal compounds margarine or peanut butter to provide which may strengthen the immune system added calories. and delay the onset of AIDS. Plant and other3. Using whole wheat or brown bread rather non-medical (alternative) substances can have than white bread.
  4. 4. MANAGING PEOPLE WITH HIV INFECTION 31serious side effects. They may also interfere these immunisations are expensive and usuallywith antiretroviral treatment. not available from state clinics. NOTE It has been shown that plant sterols and 2-18 What is the risk of malaria sterolins interact with antiretroviral drugs in HIV-positive people? and lower blood levels. Until the proper tests are done they cannot be recommended. The risk of severe malaria is increased in people infected with HIV. Therefore malaria is a2-15 What primary healthcare is needed major cause of death in HIV-infected people inby people who are HIV positive? some countries. If possible, they should avoid entering known malaria areas. Avoid mosquito1. Promoting a healthy lifestyle bites by using insecticide-impregnated bed2. Offering primary prophylaxis when nets and insect repellents. Stay indoors from indicated late afternoon to midmorning and wear long3. Providing an immunisation service sleeves and trousers as well as shoes.4. Monitoring the patient’s weight5. Screening for the early symptoms and signs Prophylactic drugs are recommended. Co- of symptomatic HIV infection trimoxazole helps reduce the risk of malaria.6. Managing the minor problems associated Treat immediately if symptoms of malaria with HIV infection develop within a few weeks of entering a7. Helping patients obtain social support and malaria area. counselling when needed8. Monitoring the CD4 count NOTE Prophylaxis with mefloquine, doxycycline or ‘Malanil’. Treat malaria with quinine and doxycycline or ‘Coartem’2-16 What is primary prophylaxis? (artemethet and lumefantrine).Most of the morbidity and mortality in HIV-infected patients are due to HIV-associated 2-19 Should HIV-positive patients bringinfections. Primary prophylaxis is the use of their sexual partners to the clinic?specific antibiotics to prevent some of these HIV-positive patients should bring theirinfections. Therefore primary prophylaxis is sexual partners, husband or wife, and childrenan important part of healthcare during the to the clinic for voluntary counselling andasymptomatic phase of HIV infection. testing (VCT). Screening all high-risk groupsCo-trimoxazole and INH are the most of people for HIV infection is importantimportant drugs used for primary prophylaxis. in limiting the spread of infection. Ideally everyone should be screened. NOTE Secondary prophylaxis is the use of specific preventative antibiotics in patients who have previously been infected with that organism. THE ROLE OF THE2-17 What immunisations are helpful? COMMUNITYMost adults will have received the routineschedule of childhood immunisations. Some 2-20 Can the community play an activeadditional immunisations may be helpful in role in managing HIV-positive people?well people with HIV infection: If the HIV epidemic is to be controlled and1. Hepatitis B patients with HIV infection adequately2. Influenza managed, the community will have toThe influenza immunisation is not effective in become actively involved in all aspects ofpeople with a CD4 below 200. Unfortunately prevention, support and care. This is difficult
  5. 5. 32 ADULT HIVwhere poverty, gender inequality, stigma and 2-22 Which community membersdiscrimination are common and HIV-infected can play an active role in helping?people see themselves as helpless victims. 1. FamiliesLocal communities must take ownership of 2. Friends and partnerstheir joint problem and not simply rely on 3. Church groupsgovernment providing the services. Fear, 4. Youth clubsdenial, stigma and discrimination will have 5. Trade union organisationsto be overcome before a communal sense of 6. HIV support groupsresponsibility can be developed and people 7. Other social groupsbelieve they can contribute positively to 8. Volunteer health workerssolving the problem and make a difference. Everyone in the community has a part to play. Without a community partnership, health Communities must become actively involved services will have only a limited impact in in addressing the enormous problem of HIV preventing HIV infection and managing infection and AIDS. people with HIV infection.Prevention and management of HIV infection 2-23 What is an HIV support group?must be seen as parts of the same integrated One of the best ways of supporting someonecommunity programme. One will not be with HIV infection is for them to join a groupeffective without the other. of people who also have HIV. Here they can share experiences in a safe, non-judgemental2-21 What active role can environment. Members of support groupsthe community play? can bring education, hope and improve the quality of life.1. Changing sexual attitudes and behaviour2. Reducing the stigma of HIV infection and AIDS 2-24 What are volunteer health workers?3. Supporting people living with HIV and These are members of the community who their carers want to help people who are living with HIV.4. Working with government services, non- Home nursing is the greatest need. Patients government organisations and volunteer need to be fed, cleaned, comforted and cared groups for. Help with simple chores such as cooking,5. Helping patients access health services and cleaning, shopping and collecting water and welfare grants firewood make a big difference.6. Educating the community about AIDS and helping to promote open discussion about Provision of knowledge, skills and support for HIV infection lay health volunteers is essential. Volunteer7. Helping to empower women health workers are the most realistic way of8. Help care for AIDS orphans providing home-based care. They also play9. Advising healthcare services on caring an important role in reducing stigma and needs discrimination in the community. 2-25 What is stigma? The community has a very important part to play in the prevention and management of HIV Stigma is the negative thoughts and feelings that people have. It is a form of discrimination and infection. has an important negative effect on people with HIV infection and their families. Unfortunately stigma is common and causes great personal
  6. 6. MANAGING PEOPLE WITH HIV INFECTION 33suffering. It remains one of the most difficult surrounding sex and sexual activity. Stigma toobstacles in tackling the HIV epidemic. sex is the real problem. In many societies, sex is seen as shameful and not spoken about or even acknowledged. Sex and the use of condoms Stigma is a negative, damaging attitude towards are ‘taboo’ subjects. Negative attitudes towards people who are HIV positive. sex are often promoted by the male head of the family, traditional leaders and the church.2-26 What are the effects of stigma? Many believe that the immorality of young women is the cause of the HIV epidemic. ItPeople with HIV who are stigmatised feel may even be viewed as a punishment to societylonely, helpless and afraid. They are made to for the sin of promiscuity.feel bad, despised, embarrassed and shamefuland may hate themselves. They often feel that NOTE In a patriarchal society, sexualthey are no longer respected and have brought relations are controlled by men, leavingdisgrace on themselves, their family and their women disempowered and unable tocommunity because they are HIV positive. control their own sexuality. Unequal powerDue to stigma and discrimination, people with relations prevent women from protectingHIV are often avoided, feel socially isolated, themselves and their children against HIV.and stop seeing friends and family. They maybe thrown out of their homes, sacked from 2-28 What can be done to overcome stigma?their jobs, abandoned by friends and even Education, understanding, and critical andassaulted or killed. open discussion are the most effective waysOwing to the effects of stigma and fear of of preventing and overcoming stigma. Peoplediscrimination, many people refuse to be need to learn appropriate emotional responsestested for HIV or deny their HIV status. This to sex and HIV infection. Support groups,often leads to a fear of disclosure, delay in where sexuality and HIV infection can betreatment and failure of preventing the spread debated, are of great help and support.of HIV. Many people choose to die of AIDS Groups such as the Treatment Actionrather than disclose their HIV status and seek Campaign and LoveLife have tried to maketreatment. In many societies the words ‘HIV’ people aware of the damage that is being doneand ‘AIDS’ are not even used. People deny by stigma to HIV. Life skills training at schoolsthere is anyone with AIDS in their community could reduce stigma to HIV by teachingdespite the fact that everyone knows that many healthy, open attitudes towards sexualitypeople are dying of HIV. and the risk of sexually transmitted diseases. Government, church and community leaders, Stigma results in fear, denial and failure to sports people and entertainers who are HIV prevent the spread of HIV. positive need to disclose their status. It is essential to create a social climate whereOwing to the fear of stigma, the HIV status people are not afraid of admitting they haveof pregnant women is often not recorded on HIV. Then they can openly practise safer sexthe antenatal cards, while that of their infants and seek healthcare.is not recorded on their Road-to-Healthcards. This prevents essential communicationbetween healthcare workers.2-27 What are the causes of stigma?Usually ignorance and fear. The stigma towardsHIV infection is usually due to the stigma
  7. 7. 34 ADULT HIVCOUNSELLING speak about their worries and fears and obtain good information. They need good counselling.2-29 What is counselling? 2-32 When is counselling needed?Counselling is a process of education, Counselling is needed:communication and support by which a 1. When a person is being prepared for ancounsellor helps people to cope with difficult HIV screen. Counselling is also neededsituations in their lives so that they are able to when the person is told the result of themake important decisions and find realistic test, whether positive or negative.ways to solve their problems. Counselling, 2. During the asymptomatic phase of HIVtherefore, helps people make their own choices infection when people are trying toand supports these decisions, rather than practise a healthy lifestyle.simply giving them advice and information 3. During the symptomatic phase when peopleor telling them what to do. Counselling is have to learn to live with their illness.far more than simply educating and is best 4. During preparation for antiretroviralprovided by a trained counsellor. treatment and again while they are on treatment to ensure good adherence. Counselling is about empowering people to 5. During terminal care when they are make important decisions and to solve their preparing to die. own problems. 2-33 What important skills are needed for HIV counselling?2-30 What is a counsellor? Two essential skills are needed for HIVA counsellor is someone who is trained to counselling:educate, assist and give psychosocial supportto people with problems. A good counsellor 1. A good knowledge of HIV infection andhelps people to understand and accept their the personal implications of being infectedHIV status and to take the best course of with HIV.action to lead a positive life. 2. The ability to communicate effectively. Communication is the basis of goodEither a professional healthcare worker (nurse, counselling.social worker, doctor) or a lay person can betrained as a counsellor. Training large numbersof good lay counsellors is one of the major 2-34 What is effective communication?challenges facing those who care for people Communication in counselling is a two-waywith HIV infection. process in which information, knowledge, thoughts and ideas are passed between the person being counselled and the counsellor. Both professional and lay people can be trained The spoken word is the most important means to be good counsellors. of communication but the counsellor must be aware that people may also pass important2-31 What counselling may be needed? messages by showing their emotions and in their body language (how they act). ThePatients with HIV infection have many counsellor must learn to pick up these signs asconcerns about their future. Once they it helps in gathering information and givingunderstand the nature of HIV infection and appropriate understanding (empathy) andknow that their immune system will become emotional support. Effective communicationprogressively damaged, they need to be able to requires the skill of active listening.
  8. 8. MANAGING PEOPLE WITH HIV INFECTION 35 Effective communication is a combination of 2-37 What are common errors which prevent good counselling? active listening and using words with care and consideration. 1. Talking more than listening 2. Interrupting and arguing 3. Being judgemental2-35 What is active listening? 4. Concentrating only on facts, not feelingsActive listening is the process of hearing not 5. Talking too fast and using complicatedonly the words people say, but also noting medical languagetheir body language and emotional reactions,and trying to understand the meaning ‘If you do not listen to the person beingbehind their words and actions. In order tounderstand what a person is saying and to counselled, do not expect them to listen to you.’respond appropriately, the counsellor mustbecome skilled in actively listening to people. Good communication is blocked when the counsellor is judgemental, critical, threatening, manipulative, uninterested, or tries to control Active listening is the key to effective counselling. the discussion.2-36 What are the steps to 2-38 What else can helpgood counselling? effective communication?A good counsellor should: 1. Choose your words carefully to ensure that what you say is what the person being1. Put the person at ease so that they can feel counselled will understand. free to talk. 2. Say what you mean and give simple2. Remove distractions and concentrate on messages. what is being said. Close the door. Do not 3. Remember that as you can receive take phone calls, fiddle with notes or tap messages from the person being counselled your pencil. from their body language, emotional3. Speak a language that the patient can reactions and tone of voice, so can you pass understand (or use a competent translator). messages to them in the same way. Make4. Do not talk too much. You cannot listen if sure you pass the ‘right’ message. you keep talking. Be silent when silence is 4. Repeat important information and make needed. Do not interrupt unnecessarily or sure it is understood. Some messages may finish people’s sentences. need to be repeated many times at one or5. Show interest. more visits before they are accepted and6. Be patient and allow questions. understood.7. Express empathy and understanding. Try to put yourself in their place so that you can see the problem from their point of view. MONITORING IMMUNE8. Help people being counselled to identify problems and try to understand the causes FUNCTION before encouraging them to develop ways of finding solutions.9. Always keep personal information 2-39 What test is used to measure the confidential. degree of damage to the immune system by HIV infection? The CD4 count. CD4 cells are lymphocytes that play a very important role in the normal functioning of the immune system. HIV
  9. 9. 36 ADULT HIVattaches to CD4 cells and kills them. As a each year by approximately 25 to 50 cells/μl.result the number of CD4 cells gradually falls This will result in the CD4 count falling fromas the HIV infection progresses and more and 600 to 200 in four to eight years. Most HIV-more CD4 cells are killed. Therefore the CD4 positive people will have symptoms and signscount is the best measure of the degree that of HIV infection by the time the CD4 countHIV has damaged the immune system. has reached 200 cells/μl. In some people the CD4 count falls particularly The CD4 count measures the degree of damage fast (rapid progressors) while in others it falls done by HIV to the immune system. slower than usual (slow progressors). 2-43 How accurate is the CD4 count?2-40 What is a normal CD4 count? The CD4 count is generally an accurateThe normal CD4 count in HIV-negative, measurement. However, the CD4 count mayhealthy adults is 600 to 1500 cells/μl. A CD4 vary, therefore the test should be repeated if thecount above 500 cells/μl is usually regarded result is unexpected. Temporary falls may beas normal. As the CD4 count falls below due to an acute illness or recent vaccination.500 cells/μl the function of the immune systemsteadily becomes worse and the patient is atincreased risk of many infections. 2-44 How often should the CD4 count be measured? The normal CD4 count is above 500 cells/μl. In HIV-positive people who are well, the CD4 count should be measured every year to assess the condition of the immune2-41 What is the predictive system. When the CD4 count falls belowvalue of a low CD4 count? 350 cells/μl it should be repeated every sixThe lower the CD4 count, the greater the risk months. Antiretroviral treatment should beof symptomatic HIV infection and AIDS. considered when the CD4 count approachesTherefore, the CD4 count is the best predictor 200 cells/μl. Regular monitoring of the CD4of the risk that an HIV-positive person will count is an important part of the managementdevelop severe HIV-associated infections (i.e. of people with HIV infection.AIDS). NOTE The CD4 count is best done in stableThe current South African guidelines patients who are not acutely ill withrecommend that antiretroviral treatment HIV-associated or other infections.should be offered when the CD4 count fallsbelow 200 cells/μl. However, antiretroviral The CD4 count is the best way of monitoring thetreatment should be offered to all pregnantwomen and people with TB if the CD4 progress of HIV infection.count is less than 350 cells/μl, whatever theirclinical stage. 2-45 Should the viral load be monitored in well patients? The CD4 count also indicates how quickly a person There is no need to routinely measure the viral will progress to symptomatic HIV disease. load in patients with HIV infection who are not yet on antiretroviral treatment. Regular measurements of viral load are used to monitor2-42 How fast does the CD4 count fall? the response to antiretroviral treatment.In most HIV-infected people who are not onantiretroviral treatment, the CD4 count falls NOTE A high viral load (above 100 000 copies/ml) indicates a high risk for disease progression.
  10. 10. MANAGING PEOPLE WITH HIV INFECTION 37 There is no need to routinely measure viral load in 2-49 Where should terminal care be provided? patients who are not on antiretroviral treatment. Home care is the basis of terminal care. If at all possible these patients should be cared forPALLIATIVE AND in their own home where they are comfortable in their own surrounding and with theirTERMINAL CARE family and friends. Only if this is impossible should they be given care in an institution, preferably in a hospice.2-46 What is palliative care?Palliative care is the care of patients who have Terminal care should be provided at home ifan incurable disease (such as HIV infection). possible.It aims at reducing suffering and improvingthe quality of life in these patients. Palliativecare starts at the time of the diagnosis and 2-50 What is a hospice?addresses all the patient’s physical, emotional, This is a place where terminally ill patientssocial and spiritual needs. Although HIV can be cared for. Management is aimed atinfection cannot be cured, most of the HIV- compassionate care and support rather thanassociated conditions can be prevented or cure. Members of a hospice team also help toadequately treated and controlled. care for patients who are at home. Palliative care addresses the physical, emotional, 2-51 Who should provide terminal care? social and spiritual needs of people with an As there are so many aspects to terminal incurable disease. care, it is best provided by a team of people who are trained in this special type of care. A NOTE Palliative care aims to ‘heal’ when multidisciplinary approach is needed to meet a cure is no longer possible. the many different physical, psychosocial and spiritual needs of terminally ill patients.2-47 What is terminal care? Patients, family and friends also have a role in terminal care.In contrast, terminal care is the active care ofpatients whose disease no longer responds totreatment, e.g. antiretroviral drugs. Terminal 2-52 What are the goals of terminal care?care is not the same as no care or poor care. To improve the quality of care of patients, andPatients who are dying of AIDS need terminal their families, who are facing death. Terminalcare. Care should never be withdrawn because care offers prevention and relief of suffering.there is no longer any hope for a cure. The goal of terminal care is not necessarily to prolong life, but to reduce suffering.2-48 Do patients with advanced HIVinfection need terminal care? The goal of terminal care is to prevent and relieveAs HIV infection cannot be cured there is suffering.an enormous need for terminal care in thesepatients. Terminal care is most needed inpatients who are likely to die within months 2-53 What does terminal care involve?or weeks. 1. The controlling of unpleasant symptoms, especially pain 2. Reducing the side effects of drugs used 3. Treating HIV-associated infections
  11. 11. 38 ADULT HIV4. Supporting the patient as well as family 6. Manage factors that aggravate pain such as and friends fear, loneliness and depression.5. Giving patients and families control over The aim of pain management is to control pain the management by giving analgesia regularly so that pain can be prevented.2-54 What physical problems need tobe addressed with terminal care? The aim of pain management is to prevent pain.1. Nutrition2. Pain and discomfort 2-58 What common mistakes2-55 What are the nutritional needs are made in treating pain?in patients with terminal AIDS? 1. Morphine is used too late.These patients are often wasted and very 2. The dose of analgesic is too low.underweight. They may also have a poor 3. Medication is not given frequently orappetite, nausea and difficulty swallowing. regularly enough.It may be difficult for them to obtain and 4. Medication is only used to treat, ratherprepare food. than prevent, pain.High-calorie and protein foods are important. 2-59 What common analgesicsIt is important that patients are able to choose are used to control pain?foods which they prefer. If possible, intravenousfluids or nasogastric feeds should be avoided. 1. For mild pain: Paracetamol (Panado) and ibuprofen (Brufen). The dose of2-56 Is pain a common problem in paracetamol is 1000 mg (2 x 500 mgpatients with advanced AIDS? tablets) every four to six hours as required. The dose of ibuprofen is 200 to 400 mgYes, severe pain is very common in patients every four to six hours as needed.who are dying of AIDS. It is likely to be 2. For moderate pain: Codeine phosphateunder-diagnosed and under-treated. Pain 30 to 60 mg every four hours. Oftensignificantly reduces the quality of life and paracetamol or ibuprofen is used inresults in fear and despair. Pain also causes addition.distress to the family. 3. Severe pain: Oral morphine solution starting at 5 to 10 mg every four hours. Severe pain is a major problem in patients who The choice of analgesics for an individual are dying of AIDS. depends on their degree of pain. As pain increases one moves up the ‘treatment ladder’ from step 1 (non-opioids such as paracetamol2-57 What are the principles of pain relief? and ibuprofen) to step 2 (weak opioids such as1. The correct choice and dose of analgesia codeine phosphate) to step 3 (strong opioids (pain relief) is important. such as morphine).2. Analgesics (drugs to relieve pain) should be given regularly (‘by the clock’) to both NOTE Amitriptyline (an antidepressant), prevent and treat pain. carbamazepine (an anticonvulsant)3. Oral analgesia should be used whenever and steroids are often helpful for pain due to peripheral neuropathy, herpes possible. neuralgia or nerve compression.4. Give clear written instructions.5. Assess the amount of pain and review the pain management frequently.
  12. 12. MANAGING PEOPLE WITH HIV INFECTION 392-60 How is morphine used? 2-62 What other forms of discomfort are common in advanced HIV infection?If possible, it should be given orally. A dosemust be given every four hours as the action 1. Anorexia, nausea and vomitingof morphine is short. Give an extra dose 2. Diarrhoeaequivalent to the four-hourly dose if the 3. Constipationpain is not controlled. Giving extra doses 4. Cough and shortness of breathfor ‘breakthrough’ pain is very important. 5. Itch or dry skinThe starting dose of 5 to 10 mg should be 6. Fatigue and weaknessincreased by 50% every second day until 7. Lack of sleepthe pain is controlled (the total dose over 8. Bed sores24 hours should be divided by two to give 9. Incontinencethe amount that the daily dose should be A syndromic approach is used in terminal careincreased). There is no maximum dose. The when the symptoms are managed even if thecorrect dose is the dose which is effective. underlying cause cannot be treated. Help fromTherefore the dose of morphine should be hospice staff is very useful in preventing andtitrated against the degree of pain. managing most of these problems.Morphine can also be given by continuoussubcutaneous infusion with a syringe driver, 2-63 What can be used to treat nausea?intramuscularly or intravenously. Nausea is a common problem, especially when treatment with morphine is started. Frequent doses of oral morphine are the most Metoclopramide (Maxolon) 10 mg orally effective form of pain relief. eight-hourly is helpful.2-61 What common problems 2-64 How can treating HIV-associatedoccur with morphine? infections improve the quality of life in a patient dying of AIDS?1. All patients on morphine develop constipation. Fruit, bran and extra fluids Treating the symptoms caused by HIV- are helpful. Laxatives such as liquid associated infections can greatly improve the paraffin 5 to 20 ml daily and senna quality of the last weeks of life. For exampzle, (Sennacot) 15 to 30 mg daily should be treating painful mouth ulcers, or relieving used. Constipation does not become less painful swallowing by managing fungal with continued use of morphine and is the oesophagitis, or preventing blindness due to major side effect. Morphine may be useful CMV retinitis. in controlling chronic diarrhoea.2. Nausea and drowsiness. This improves Relief of symptoms is often best achieved by with time (tolerance) and responds to a treating HIV-associated infections. lower dose.Addiction is not of concern when morphine is 2-65 Is it worthwhile treatingused to control pain in terminally ill patients. patients who are dying?Do not stop morphine suddenly as this mayresult in withdrawal symptoms. Respiratory Yes. Patients should never be allowed todepression is uncommon when morphine is feel abandoned by their health carers. Pain,used to control pain. discomfort and distress must always be aggressively managed. However, sometimes it may not be realistic to treat terminally ill patients if the treatment will only prolong their suffering.
  13. 13. 40 ADULT HIVThe question that must always be asked is ‘will 2-70 Do the carers need care themselves?this make a difference to the quality of the Yes. This is often forgotten or not realised.person’s life?’ Care of the carers is a very important part of terminal care. It is physically and emotionally2-66 What are the psychological exhausting to care for terminally ill patients.aspects of terminal care? Practical help with lifting, turning, washing andAnxiety, fear and depression are common feeding is needed, as well as emotional support.in terminally ill patients and are often notrecognised. It is important to manage anxietyand depression as they both aggravate pain. CASE STUDY 1 Anxiety, fear and depression make pain worse. A young woman with asymptomatic HIV infection is referred to a primary-care clinic where the staff have a special interest in2-67 What are the signs of depression? managing HIV-positive people who are stillWithdrawal, sadness, sleep disturbances, well. She wants to learn how to live with herpoor appetite, depressed mood, lack of condition.energy and interest in the world aroundthem, and suicidal thoughts. Depression is 1. What are the goals of managing peoplecommon and unfortunately often missed. who have asymptomatic HIV infection?Management consists of emotional support To help these people to remain well for asand antidepressants. Response to medication long as possible and teach them how to livemay take a few weeks. a healthy lifestyle. They also need to prevent spreading HIV infection to others.2-68 What is a memory box?This is a simple box that parents can store 2. What should she do tomementos in for their children. Photographs, develop a healthy lifestyle?letters and cards are kept in the box which is Take a balanced diet, get adequate rest andgiven to the children when they are older to regular exercise. Avoid excessive alcohol,help them remember a parent who has died of do not smoke or abuse drugs and develop aAIDS. A memory box is one of the many ways positive outlook on life.that a parent can prepare themselves beforedeath separates them from their children. 3. How can she get help to achieve these goals?2-69 How can the spiritual needsof terminal patients be met? She can join a wellness programme.Most people as they near the end of their 4. What is an HIV support group?lives need to speak to someone about theirapproaching death. The spiritual needs of This is a group of people with HIV infectionmembers of a religious group usually are well who can support each other and shareattended to. However, many people who have experiences in a safe, non-judgementalnot regarded themselves as religious also need environment. They can learn from one anotherspiritual counselling. It is important for the how to live a healthy life.members of the health team to find someonesuitable to meet this need.
  14. 14. MANAGING PEOPLE WITH HIV INFECTION 415. What is safer sex? 5. What is the value of measuring his weight at each clinic visit?Abstinence is the only way to be completelysafe. However, being faithful to a single Unexpected weight loss may be an earlypartner and using a condom are ways to sign of symptomatic HIV infection orgreatly reduce the risk of getting or passing on tuberculosis. Maintaining a normal bodyan HIV infection. weight by taking a good, balanced diet helps to prolong the latent phase.6. Can HIV infection be managedwithout antiretroviral treatment? 6. Will multivitamin pills and herbal medicines help to delay the onsetMuch can be done to remain well for many of symptomatic HIV infection?years after HIV infection. Minor problemscan also be successfully managed. However, There is little evidence that specific nutritionalantiretroviral treatment is the only effective supplements help if the person is on a goodmanagement when a patient develops AIDS. diet, while herbal remedies can have seriousUnfortunately, it is not always available to all side effects and drug interactions with thewho need it. antiretroviral medication.CASE STUDY 2 CASE STUDY 3A healthy man with asymptomatic HIV A depressed patient with AIDS is referred to ainfection has been followed up at a local clinic HIV counsellor. She has a good knowledge offor a number of years. At his last visit his CD4 HIV infections and is aware of the importancecount is 650 cells/μl. of her symptoms. Unfortunately, she does not have access to antiretroviral treatment.1. Is his CD4 count normal? 1. What is HIV counselling?Yes, as the normal range is 600 to 1500 cells/μl. Counselling is a method which uses education,2. When should his CD4 count be repeated? communication and support to help a person manage their lives better, make decisions andA patient with asymptomatic HIV infection find realistic ways to handle their problems.should have a routine CD4 count measured Counselling is more than just education.every year. Once the CD4 count falls below 350cells/μl it should be measured every six months. 2. Can someone who is not a health professional become a counsellor?3. How fast does a CD4 count fall? Yes. Many people from the community can beThe rate of fall varies from one person to trained to become good counsellors.another. However, the CD4 count in mostHIV-infected people falls by 25 to 50 cells/μl 3. What skills are needed by a counsellor?each year. They need to have a good knowledge of HIV4. Should the viral load also be measured? infection and also be able to communicate well with people.The viral load is not routinely measuredunless the person is being managed onantiretroviral treatment.
  15. 15. 42 ADULT HIV4. What is active listening? 2. Could the hospice advise on his home care?Active listening notices body languageand emotional reactions as well as words Yes. Staff from the local hospice do hometo understand what a person is trying to visits and are very experienced in the care ofsay. Active listening is the key to effective terminally ill patients.counselling. 3. What would be the best pain5. What are commonly missed management for this man?signs of depression? Usually analgesics for mild pain (e.g.A depressed mood, sadness, lack of interest paracetamol) and moderate pain (e.g. codeine)in the world around them, sleep disturbances are tried first. However, this patient probablyand suicidal thoughts. Depressed patients needs morphine for severe pain.should be referred for assessment and possibletreatment with antidepressants. 4. What is the preferred way of giving morphine?6. Is it worth treating a person with AIDS if By mouth every four hours. The dose ofantiretroviral treatment is not available? morphine is increased until the pain isMost definitely. Many of the symptoms of AIDS controlled. The aim is to prevent pain and notcan be relieved and the quality of their lives to give morphine only when the pain is severe.improved during the last weeks and months.Patients should never be allowed to feel that 5. What is the common sidethey have been abandoned by the health carers. effect of morphine? Constipation. This can be controlled byCASE STUDY 4 adding fruit, bran and extra liquid to the diet. A laxative should also be given. Nausea and drowsiness may occur but they usuallyA terminally ill man with AIDS is being cared improve with time.for at home by his family. He has constantsevere pain and the family is exhausted and 6. What is a memory box?can no longer manage. It is a box in which dying patients can put1. Who should look after this patient? mementos, such as photographs, letters and cards, that can be given to their children whenIt would be best if he could remain at home, they are older. It enables terminally ill patientsbut the family will need help. Failing this, it to leave something behind which will helpmay be possible to move him to a hospice. their children remember them.Only as a last resort should he be admitted tohospital. Volunteer health workers could helpwith the many tasks needed in the home, suchas cleaning and cooking. They can also helpwith washing and cleaning the patient.