AIDS action Issue 41 Page 1 2
Issue 41 June - August 1998
Caring for people who are very sick
Most people would like to die with dignity and in peace.
However, carers often lack the support that they need to relieve the pain and distress of people who are nearing death.
Prejudice and fear of HIV can make the experience particularly distressing.
This issue of AIDS Action provides practical advice to those who are caring for very sick people. It emphasises that the quality of life of someone who is dying is not just related to medical care, but that social, spiritual and emotional support are equally important.
Severe pain is a common symptom of HIV-related illness and can cause much suffering. However, there are many ways of reducing pain. This issue looks at how to make the person more comfortable, and discusses pain-killing drugs for HIV-related illnesses.
Often the biggest fear that very sick people face is fear of what might happen to their loved ones after they have died. Helping them with practical arrangements, such as making a will, can reduce their anxiety. Guidelines for this are included.
The needs of carers themselves must not be overlooked. Care for very sick people is often provided by family, partners and friends, as well as health workers. Carers need practical and emotional support to enable them to give good care, including information about HIV itself, training in how to make a sick person comfortable, and bereavement counselling to help them cope when the person dies.
Death and dying are subjects that many people find difficult to talk about. But by being better prepared for the end of life, people with HIV may feel more able to have a good quality of life, even when very sick.
AHRTAG has a new name: Healthlink Worldwide. The new name highlights the organisation's focus on health worldwide and describes its way of working: linking information and health workers, linking partners, linking policy and practice.
In this Issue
A better life and death
Preparing for death can make the end of life a less worrying and more positive experience for sick people and their carers.
W hen someone is in pain or fears dying, carers, family and friends can help by giving the person as much information and appropriate care as possible. The quality of life of someone who is dying is not just related to medical care. Social, spiritual and emotional support, resolving unfinished business and making practical arrangements are equally important.
HIV-positive people should be able to decide about their treatment and about how and where they wish to die. They may need to consider in advance what treatment they want to receive towards the end of their life, who will make treatment decisions on their behalf if they develop dementia (confusion), and where they wish to die.
Sick people need skilled medical and nursing care for physical problems such as pain, weight loss, diarrhoea, and skin problems. Relieving symptoms such as pain can improve quality of life. Some people find it helpful to use traditional or complementary medicine to relieve pain.
Towards the end of life, people may need to discuss issues related to their life or to dying. They may need to decide whether or not to disclose their HIV status to family or friends if they have not already done so.
One of the best things that a carer can do is to be there, to listen, talk and encourage the person to talk about their feelings, and let them know that they care. However sick someone is, they can still be included in daily activities and watch what is going on around them. The need for love and acceptance from carers is particularly important, especially for people who are experiencing loneliness, isolation and rejection.
People approaching the end of life may find that counselling helps them to accept and understand what is happening. They may deny their illness, or become angry or blame others. They may despair because of the absence of a cure, be anxious about partners and family, or feel grief, fear of death, and guilt. It can be helpful to talk to others in the same situation. It can be very useful to put people in touch with a local support group for people with AIDS.
Types of Care
People who are approaching the end of life need both palliative care and terminal care.
Palliative care considers the needs of the whole person. It includes medical and nursing care, social and emotional support, counselling and spiritual care. It emphasises living, helping people to make the most of each day and to maintain a sense of hope. It includes organising things for the person to look forward to, and encouraging them to eat healthily and live as normal a life as possible. It means caring for them, treating them with respect and acceptance, acknowledging their right to privacy and confidentiality. and responding to their individual needs.
Terminal care aims to improve the quality of daily life at the end of life, by relieving symptoms and enabling a person to die in comfort, with dignity and in keeping with their wishes and religious requirements. Health workers need to consider:
what treatment and care are available to improve quality of the end of life
what minimum standards of care should be expected at the end of life in health facilities or at home, and what training and support is needed to provide these
how better standards of care can be promoted
what guidelines exist for hospital discharges and home care support
how to ensure that the wishes of people who are dying are respected
how to ensure that people with HIV/AIDS have the opportunity to discuss
what spiritual support is available to people at the end of life
how people who are dying can be helped to find peace and to come to terms how to help people with HIV to make plans for the future
what changes in law, policy or custom are needed to ensure that people’s wishes anxieties, loneliness and other emotions with their life and death, whether they have religious faith or not are respected after death.
Health workers from Nsambye Hospital, Uganda, provide spiritual support as well as physical care during a home visit.
People with HIV may need spiritual support. They may feel cut off from their religion or religious community, or there may be problems with funeral arrangements. Some people find it helps to talk to someone with the same religious background, or to practise their religion even if they have not done so for a while. Others may feel pressured into talking about religious issues when they would prefer not to.
Carers should acknowledge a person's spiritual needs, respect their religious beliefs or lack of them, identify an appropriate person who can provide spiritual support, and discuss whether the person wants any religious rituals to be performed.
People often worry about what will happen to their loved ones after they die. It is helpful to make practical arrangements as early as possible for debts, school fees, funeral costs, family support and so on. Although it can be distressing to think about these things, making plans can reduce anxiety. Making a will (see box below) can prevent family conflict and ensure that partners, especially same sex or unmarried partners, and children are not disinherited or left destitute.
When death comes
During the last hours of a person's life, carers should focus on minimising pain, reducing shortness of breath, and reducing the risk of seizures and choking. If symptoms and distress are not easily controlled it may be appropriate to use sedation if this is acceptable to the person (see page 6).
Although it is not always easy to know when death is near, the person usually becomes very weak and immobile, uninterested in food and drink, and is drowsy or asleep much of the time. It is important not to leave them alone, as many people are afraid of dying alone.
If a person dies in a hospital or hospice, health workers should respect rituals and customs related to laying out the body, and allow mourners time alone with the body if they wish. Trauma, grief, anger and other feelings can be reduced if practical arrangements follow the wishes of the person, their family and friends.
Doctors need to think about what goes on the death certificate. It may cause problems for families if the word 'AIDS' is written, because death certificates are not confidential. It may be better to write the immediate cause of death, such as pneumonia.
Ian Kramer, UK Coalition of People Living with HIV/AIDS, 250 Kennington Lane, London SEII 5RD, UK.
The UK Coalition has produced discussion guidelines on end of life issues. Please contact Ian Kramer to obtain a copy or to participate in the debate.
Making a will
A will is a written document that makes clear what a person wishes to happen after their death. Making a will is easy. But many people do not make one, because they think that it is difficult or they believe that it will make them die more quickly.
The following guidelines were developed in Tanzania in response to growing numbers of women and children left unprovided for. Sometimes wills were contested. Sometimes there was no valid will, and property, land and money went to other family members.
A will must be made in accordance with local law, although the principles are similar everywhere. A will can:
ensure that property, land and valuables are passed on to people that the person would like to receive them
make clear who has custody of children, and if there is no partner, appoint guardians
specify who will ensure the will is acted upon (trustees or executors) arrangements.
provide instructions about funeral
To be valid, a will must be:
written in permanent ink or typed
signed by the person and clearly dated
witnessed by persons present at the same time as signing and dating. The number of witnesses required depends on the country. Those who will benefit from the will should not be witnesses
written when the person is of sound mind and is not being forced to do so by someone else.
Source: Writing a valid will, M C Mukoyogo. Published by AMREF, PO Box 2 773, Dar-es-Salaam, Tanzania.
Helping carers to cope
Care of the sick and dying is often provided by family, partners and friends. These people need support to help them give good care.
Health workers can teach simple nursing techniques to people who are looking after a sick person at home. These can make a big difference to the person's comfort, and can give carers more confidence.
Carers also need practical and emotional support. If they themselves are tired or distressed, they cannot give sick people the care they need. Counselling can help carers to deal with fears and feelings of isolation, helplessness, depression or anxiety, both during the person's illness and after their death.
Carers may feel reluctant to talk about the problems they are facing and fear being judged an inadequate carer. They may not want to put their needs before those of the patient. They may believe that problems are unavoidable and cannot be resolved.
Health workers can help carers to:
plan how they will manage the care of someone who is dying and share the responsibility with others
keep simple records of medications given to the person, so that it is easy for other carers to see what the person has been given and when
take time off, have enough rest, eat well and look after their own health
talk with a friend, relative or trusted health worker
join or start a support group for carers.
Families and friends often have very little social support, or may have become isolated while the person was very sick. Bereavement support should be available before the person dies, and for as long afterwards as people need it.
Different people react to death in different ways, and need different types of support. It can take months or years to come to terms with loss. People's response may be affected by the way the person died - whether they were alone and in pain, or whether they died peacefully surrounded by those they loved. Those left behind may blame themselves if they feel that things could have been done better.
Bereavement counselling can:
give people an opportunity to talk about events leading up to the death, about the death itself and rituals immediately after the death
reassure people that feelings of disbelief, denial, sadness, pain and anger are normal
allow people to express their feelings and concerns, especially if it is difficult for them to do this with friends and family
enable people to accept the reality of their loss and start to look to the future
provide information about HIV transmission if people lack knowledge or have concerns and unresolved fears.
Dr Veronica Moss, Medical Director, Mildmay International, I Nelson Mews, Southend-on-Sea, Essex SS I I AL, UK. With thanks also to Sister Margaret Moran in Ghana, Chris Green in Indonesia, and Ditch Townsend in Malaysia.
Simple techniques for nursing at home
These develop when a person lies in one position for long periods, or because of pressure on bony parts of the body. Keep skin clean and dry, change the person's position every 2-4 hours, and use pillows or soft clothes to protect bony areas. Treat sores by washing daily with salty water (tasting like tears) and covering with a clean dressing. It can help to put honey, fresh paw paw pulp (from just inside the skin of the fruit) or yoghurt on sores 1-2 times a day under the dressing.
Conjunctivitis and other eye infections
Dip clean cotton wool into a solution of boiled water and salt (tasting no saltier than tears) and wipe gently across one eye. Repeat with a new piece of cotton wool for the other eye. Throwaway used cotton wool.
Mouth care and oral thrush
Clean the teeth and use a mouthwash made with boiled water and a little potassium permanganate, or bicarbonate of soda and lemon juice. If the person is too weak to do this, clean their teeth gently with a small soft toothbrush, or a stick with the end chewed to make it soft, or a soft cloth around the finger. A person with oral thrush may find it difficult to swallow liquids. Give small sips of fluid as often as possible to keep the mouth moist.
Muscle aches and pains
Massage can relieve aching muscles and headaches and improve circulation. When someone has sores on the skin due to Kaposi's sarcoma (KS), massage carefully to avoid opening sores.
Wounds and ulcers
Keep these clean, using freshly prepared salt solution and covering with clean dressings. A wound that smells bad is probably infected. Antibiotics can help. Oozing wounds can be covered with paw paw skin (placing the inside of the skin against the wound). Apply metronidazole gel or liquid to the wound to control infection and smell. Change dressings daily or weekly as required.
Oedema (swelling) associated with KS or heart failure
Relieve discomfort by raising the limb onto a pillow or pile of straw or banana leaves covered with a cloth. Massage very gently, starting from the foot and moving upwards. The skin may be very sensitive to touch. In cases of heart failure and oedema of feet and ankles, the best treatment is diuretic medication, under a doctor's supervision. Keep feet raised on a low stool when the person is sitting up. Diuretic tablets do not usually help when oedema is associated with KS.
Simple techniques for nursing at home
Eating or swallowing difficulties
Treat thrush in the mouth or throat with ketaconazole tablets or another antifungal drug. or nystatin suspension. or gentian violet. Mouthwashes (see 'Mouth care and oral thrush') can also help. Give drinks and food that are cold or warm but not hot. Give soft food that is not spicy, such as soups or mashed banana with milk. Offer small amounts every few hours.
Breathing difficulties or cough
It is easier to breathe in a sitting position. Coughing can hurt the throat, cause breathing problems, prevent sleep and cause tiredness. Helping someone to walk about or sit up can reduce coughing.
Anxiety and fear
Do not leave a person alone if they are anxious or frightened. Try to reassure them by holding their hand and speaking soothingly.
A very sick person may experience confusion, loss of memory or personality changes and may be at risk of hurting themselves. Keep potential dangers such as boiling water or medicine out of reach. Speak calmly and quietly. Avoid arguing. Say 'no' gently but firmly when necessary, or leave the room for a short while. Be prepared to repeat what you say.
Moving and changing positions
A person who is weak can be helped to sit up, and to stand and walk with support. Take care to avoid hurting someone, especially if they are sensitive to touch. Carers need to know how to lift and move a person without hurting their own backs. by bending from the hips and keeping their back straight.
Changing dirty bedclothes
Turn the person onto their side. Roll up dirty bedclothes towards the person's back. Clean and dry the person's skin and apply lubricating oil, such as Vaseline. Place a clean sheet, rolled up lengthways, half way down the bed, against the person's back. Roll the person back onto the clean sheet. Remove the dirty sheet. Unroll the clean sheet to cover the rest of the bed.
Making a sick person comfortable
Back rests and foot rests make sitting up more comfortable and breathing easier. Rubbing oil into dry skin can relieve itching. Itching can also be soothed by applying calamine lotion. A backrub, using oil or lotion, can moisten dry skin, stimulate circulation and relieve numbness. Clean bedding and clothing also help.
What carers need to know
Carers need information and training about:
how HIV is and is not spread, to reduce fears about looking after someone with HIV/AIDS. and t o reduce the risk of transmission
services and support available, including where to obtain resources such as gloves and soap
how to care for a sick person’s physical, emotional and spiritual needs
progression of the illness
sudden changes in the person’s condition, particularly changes that signal that death may be near
care of someone who is dying.
Effective control of pain can greatly improve quality of life, both at home and in hospital.
Pain is common in HIV-related illness. It may be sudden or last a long time. Sometimes carers may not believe a person is in severe pain and therefore not deal with it. But no one should have to suffer from uncontrolled pain. Pain is caused by:
HIV, which can affect the nerve fibres (peripheral neuropathy)
opportunistic infections, such as herpes zoster and cancers such as Kaposi's sarcoma (KS) or non-Hodgkins lymphoma
lying still, leading to sores, general weakness or muscle ache.
Persistent or recurring pain should be treated by following the three steps in the WHO 'analgesic ladder' (see below).
Drugs for persistent pain should be given regularly, according to how long their effect lasts. For example, instructions suggest that paracetamol should be taken every four hours, and diclofenac every eight hours. Health workers should also be guided by the response of the patient. Patients should never be left in pain waiting for the next dose. They should be reviewed regularly to ensure that the right drugs and dosages are being given.
Use the least invasive route of administration - preferably oral tablets or liquids, or suppositories. Avoid injections if possible.
Pain-relieving drugs taken over a period of time should be given under medical or nursing supervision, partly because of their side effects:
Aspirin may cause stomach bleeding or ulceration. Aspirin should be stopped if the patient complains of indigestion or the stool becomes very black - black stools suggest bleeding in the intestinal tract.
Codeine and morphine cause constipation. This may not be a problem for patients with persistent diarrhoea, but others may need to change their diet or use laxatives.
An overdose of paracetamol can cause severe liver damage and subsequent death.
Many doctors and nurses are unwilling to give morphine or other opioid drugs (derived from opium) because they associate these drugs with illegal drug use or are concerned about addiction. However, denying patients these drugs can cause unnecessary suffering. If opioid drugs are given properly by trained health workers there is no problem with addiction. These drugs need to be made more widely accessible to patients with severe pain, and health workers need to be trained in their use (see page 7).
Dr Veronica Moss, Mildmay International (address on page 5).
Effective control of pain can greatly improve quality of life, both at home and in hospital.
With or without co-analgesic
Morphine is the strongest analgesic available and the easiest to control and monitor accurately.
Other strong opioid drugs include SYNTETIC PETHIDINE and FENTANYL. The effects of pethidine only last for three hours at most, so pethidine is unsuitable for treating chronic pain or for long term use
2 CODEINE OR DIHYDROCODEINE
With or without non-steroidal drugs (NSAIDs) such as IBUPROFEN or DICLOFENAC
If severe pain persists, move to
1 ASPIRIN OR PARACETAMOL
Simplest and most widely available analgesics (pain-relieving drugs). Give for one or two days.
If they do not relieve the pain, move to STEP 2.
It after following the three steps, the pain is still uncontrolled, the patient should be referred to a specialist
Making drugs available
The experience of working with cancer patients at home has offered new strategies for relieving HIV-related pain at home.
Hospice Uganda was established in 1993 to provide palliative care for cancer patients. It soon became clear that there were many AIDS patients suffering from severe pain.
Since 1994 Hospice Uganda has accepted referrals from AIDS support teams. By 1998, one in 10 patients had AIDS.
Patients with Kaposi's sarcoma or cancer of the cervix, both of which are HIV-related, represented 27 per cent of patients.
Although there is good home and hospital care for people with HIV in Uganda, pain is not always treated adequately. The reasons for this include health workers' lack of knowledge about modern methods of pain control, lack of analgesics (pain-relieving drugs) in drug kits provided by government and NGOs for the management of AIDS patients, and lack of access to medical care in many communities. Basic analgesics, such as paracetamol and aspirin, are widely available and affordable. However, expensive analgesics, such as codeine, are often only obtainable from district hospitals and are often out of stock. Morphine, the main analgesic on Step 3 of the WHO analgesic ladder (see page 6), is usually only available in injectable form at major hospitals.
Different types of pain
Hospice Uganda uses the WHO analgesic ladder to control pain in both cancer and AIDS patients. However, management of AIDS pain differs from cancer pain in some important ways:
Most cancer patients require pain control for the rest of their lives. AIDS patients often experience pain that is temporary and associated with infections. With effective treatment, the pain usually improves and analgesics can be phased out.
Many AIDS patients have more than one pain related to different causes. Each needs to be diagnosed and treated. Psychological and spiritual concerns related to HIV can make physical pain worse. These concerns must be addressed at the same time as treating physical pain.
Some HIV-related illnesses cause pain that does not respond to morphine. Herpes zoster and neuropathies damage nerves. They require membrane stabilisers - amitryptilline in very small doses is good for steady and burning pain; an anticonvulsant such as phenytoin is better for stabbing pain.
New strategies needed
Uganda has only one doctor for every 23,000 people. It is estimated that each year, 23 of these people will develop cancer and 756 will develop AIDS. A quarter of those developing cancer or AIDS will experience severe pain at some point. If only doctors are permitted to diagnose and prescribe pain-relieving drugs, every doctor would need to control pain in over 200 patients.
To ensure that people with AIDS receive effective pain relief, new strategies need to be developed to make analgesics more accessible at community level and to train other health workers to diagnose pain and dispense analgesics.
Since morphine tablets are expensive, methods for making morphine powder available need to be considered. Powdered morphine must be weighed very carefully and weighing scales are expensive. Powder could be weighed centrally and sealed in packages to be made up at health units closer to the community. The experience of Hospice Uganda suggests that 500mg would be a suitable unit. This could be made up to 50ml to give a strong solution of 10mg per ml, or up to 500ml to make a solution of 1mg per ml. The starting dose range is from 2.5mg to 5mg four hourly and a double dose at bedtime, which usually allows the patient to sleep until morning.
Careful supervision, record keeping and other safeguards in keeping with international regulations would be needed. But it is important to find ways to make pain control available to the large number of people suffering with severe AIDS pain.
Anne Merriman, Medical Director, Hospice Uganda, PO Box 7757, Kampala, Uganda.
AIDS action Issue 41 7 Page 8
Support Groups Take Action
AIDS care outside the hospital describes home care including pain relief
in simple terms.
Available from Malaysian AIDS Care, 21 Jalan Sultan Abdul Sanad, Brickfields, 50470, Kuala Lumpur, Malaysia.
AIDS home care handbook is a practical handbook for families and communities to provide safe and compassionate AIDS care at home, with information about what can be done at home to alleviate illnesses.
Available for Sw.fr.12.60 (developing countries), Sw.fr.18 (elsewhere) from UNAIOS, CH-1211 Geneva 27, Switzerland. E-mail: [email protected] (WHO/GPA/lDS/HCS/93.2)
Cancer pain relief describes how to alleviate and treat pain at home, and includes information on opioid availability. It is useful for all carers providing pain relief.
Available for Sw.fr.17 from WHO, CH-1211 Geneva 27, Switzerland.
A comprehensive guide for the care of persons with HIV disease, Module 4: palliative care covers palliative nursing and home care issues.
Available in English and French for Can.$20 (single copies free to Canadian organisations) from Canadian HIV/AIDS Clearinghouse, Suite 400, 1565 Carling Avenue, Ottawa, Ontario, Canada KIZ 8RI.
Pain and symptom control in the terminal cancer and AIDS patient explains the principles of palliative care methods for pain and symptom control.
Available for US$4 from Hospice Africa (Uganda), PO Box 7757, Kampala, Uganda.
Palliative care for people with AIDS covers nursing and care issues for HIV-related pain.
Available for £13.99 from booksellers (ISBN 0340 613 71B)
New Edition of AIDS Action for East Africa
Commissioning editor Sian Long
Guest editor Kathy Attawell
Copy editor Celia Till
Design and production Ingrid Emsden
Editorial advisory group Calle Almedal, Kathy Attawell, Dr Nina Castilio-Caradang, Nancy Fee, Susie Foster, Peter Gordon, Dr Sam Kalibala, Dr Ute Küpper, Philippa Lawson, Dr Tuti Parwati Merati, Dr Arletty Pinel, Dr Sunanda Ray, Daniel Tarantola, Dr Eric van Praag, Rakesh Rajani
Aids Action Publishing partners HAIN (the Philippines) SANASO Secretariat (Zimbabwe) ENDA (Senegal) ABIA (Brazil) Colectivo Sol (Mexico) Consultants based at University Eduardo Mondlane (Mozambique)
AHRTAG's AIDS programme is supported by CAFOD, Christian Aid, DfkF/JFS, HIVOS, ICCO, Misereor, Norwegian Red Cross, Oxfam, Save the Children Fund.
The International Newsletter on AIDS Prevention and Care
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