Antiretroviral (ARV) treatment Fact Sheet 18
Palliative care and symptom control
What is palliative care? Why are palliative care and symptom
Palliative care means care for all the needs of adults
control important for people with HIV?
and children with life-threatening or life-limiting Pain and symptom control often do not receive
illness, such as HIV/AIDS, cancer or liver disease. enough attention in HIV care. As a result many
Palliative care can help people of any age and at people with HIV suffer unnecessarily from pain and
any stage of a disease, not just at the end of life. other symptoms. This might be because of stigma
and lack of medical treatment, lack of medicines or
Palliative care has two essential aspects: other resources, lack of training in palliative care, or
- control of pain and other symptoms, including lack of understanding about how symptoms such as
the use of powerful pain killing medicines such as pain can be relieved.
morphine for severe pain;
- supportive care that includes counselling, People with HIV suffer from emotional and social
psychosocial and spiritual support, home based effects caused by stigma as well as by illness. There
care, treatment for illnesses, adequate food, water is therefore a need for both pain control and
and shelter, legal help and family support, including psychosocial support. Palliative care can help both
school fees and other basic living needs. those infected by HIV and those affected by HIV.
Palliative care can help a person to continue living
as fully as possible, even if they have a serious How do they relate to ARV treatment
illness. If a person is near the end of life, palliative A person with HIV who is on ARV treatment will
care also includes care for the dying and support for usually be able to regain health within months after
family and friends after a person has died. starting treatment and will live for a longer time.
However, he or she will also need palliative care and
What is symptom control? symptom control at various stages, for example:
- after diagnosis, if the person has symptoms, for
Symptoms are the signs or effects of illness; for example from opportunistic infections;
example, vomiting can be a sign of problems in the - at specific times while using ARV treatment, for
stomach or in a part of the brain. example as a result of side effects or if treatment
Symptom control, sometimes called symptom relief fails and symptoms start to appear;
or symptom management, is essential in palliative - in the later stages of life when the person might be
care, along with other forms of care and support. It ill more often, and is less able to cope with
aims to reduce existing symptoms and to prevent symptoms or to look after her/himself.
them before they can cause discomfort or difficulty. If ARV treatment choices are limited because of side
Symptom control depends on good supportive care effects, drug resistance or lack of resources, a
as well as on medicines for pain and other person will benefit from palliative and supportive
symptoms. care to help them to continue life as long as
Psychological and spiritual support, basic physical possible.
care, feeling loved and close to other people, and As well as getting curative treatment for conditions
reducing stress, are all very important for achieving such as TB or sexually transmitted infections, people
good symptom control. with HIV might also need palliative treatment for
Symptom control can be achieved in a home setting symptoms caused by pain, for example from
or in a health facility. If there are sufficient damaged nerves, herpes infections, or skin and
resources, it can be helpful to admit a person to a other problems.
health facility to get their symptoms assessed and Symptom control will also be needed if a person
under control; ongoing symptom control can then suffers from side effects of ARV treatment or from
continue in the community. another disease during their life on ARV treatment.
What symptoms are most common for Continuing or chronic pains are sometimes hard to
someone with HIV? explain in words and a person might believe that
nothing can be done to help. This type of pain might
People with HIV can have a wide range of
not be noticed by others, even if it is severe – the
symptoms; some of them are caused by HIV itself,
person might just seem sad, worried or
some are caused by opportunistic infections, and
some are caused by side effects of medication.
Treatment can remove many symptoms, but Methods of finding out about pain can include:
symptom control is also often necessary until the - asking the person, or the carer, where the pain is,
treatment works. what it feels like, when it happens, and what makes
it worse or better;
Common symptoms for people with HIV include:
- asking about psychological, social or spiritual
- Cough or difficulty in breathing
aspects of the person’s life, to check if these are
- Serious weight loss
contributing to the pain;
- Serious lack of energy or tiredness
- asking the person or their carer to use a drawing of
- Fever or sweating
a human body to show where pains are felt.
- Sickness, vomiting or diarrhoea
- Sore mouth or throat
- Itching or sore skin What medicines are used for pain
- Worry, sadness or confusion control?
- Pain of various kinds
Medicines can be used to control pain. They are
Pain is a very common symptom that is often called pain killers or analgesics.
experienced at the same time as most of the other
Some of these drugs are called opioids or narcotics,
symptoms mentioned above. It can be a signal of
such as morphine or codeine. They are more
problems in: bones, mouth or throat, intestines,
powerful than other painkillers.
muscles or nerves (causes of nerve pain include
herpes zoster, drug side-effects or HIV itself). Other pain killers are less powerful, such as
paracetamol, and are useful for less troublesome
People can also experienced pain because of
pains. They are sometimes called non-narcotics or
spiritual, psychological or social problems. To
reduce the pain, the problems must be addressed as
well as finding out if medication will help. Some types of pain cannot be controlled even with
strong pain killers. Different medicines are used for
Effective pain control can help to reduce stress,
these, for example drugs that are used for other
worry and sadness. It is also important to provide
problems can also control some nerve pains. Some
emotional support if the person is depressed or
of these drugs can reduce the effects of ARVs so
distressed. If a person has other problems they
should not be used if a person is on ARV treatment.
should also receive support to deal with these.
Pain control is achieved by following three steps:
trying simple pain killers first, then moderate ones,
How can pain be assessed? and then strong ones, until pain is controlled.
Pain is an unpleasant feeling that can cause distress Mild or simple analgesics include paracetamol,
or unhappiness. Many people experience more than aspirin, ibuprofen or similar drugs.
one pain at any time – it is important to find out Moderate (medium) pain killers include weak opioids
about all the different pains they are experiencing. such as codeine.
Some people feel and react to pain very differently Morphine is the best strong opioid pain killing
from other people. It is necessary to find out how medicines. It is usually taken as a liquid, by mouth
much the pain affects a person. Pain is hard to either by drinking or through a tube. It is safe to use
describe in words. It is said that “you area sure for serious pain, it is easy to administer and it is
about your own pain, but you are always uncertain cheap.
about another person’s pain”. This means that even
Morphine causes some side effects, especially
when a person tries to describe his or her pain,
constipation, some sickness or vomiting, dry mouth,
another person does not know exactly how it feels.
occasionally confusion or sleepiness.
It is important to assess what is causing the pain.
Medical use of morphine is permitted by law in many
Different pains need different medicines.
countries, helping to make good palliative care
Acute pain is usually easier to explain and accessible even to people in settings where health
understand, for example the pain caused by a cut in services are limited.
the skin or by a broken bone