|
End of Life Care
Palliative care
Preparing for death
Family and orphan support
TOP
In many resource poor countries, the existing health
infrastructure is inadequate to provide in-hospital care for
terminally ill people. Often, the only option available for care of
people with AIDS is care at home. Even when hospital care is
available this is often not what people want.
Whether in a hospital, hospice or home, palliative
care aims to provide comfort and support for people who are
terminally ill and, ultimately, to allow them to die with dignity.
This can involve controlling pain, treating symptoms such as
diarrhoea and vomiting, relieving psychological or spiritual
anguish, and supporting families and carers.
It is estimated that at least half of all people
with HIV will suffer from severe pain in the course of their
disease, and so might require strong pain killers such as morphine.
However, such medications are often impossible to obtain in resource
poor communities, and in many countries this problem is worsened by
restrictive legislation. When available, it is recommended that
health workers should not withold pain relief because they worry
that a patient will become addicted to the drugs. Pain medication
should be reviewed frequently and increased when necessary, and pain
should be controlled in a way that keeps the patient as alert and
active as possible.
It is often believed that it is not appropriate to
talk about the fact that somebody is going to die, and that
mentioning death will in some way hasten it. However, for those who
wish to discuss death, open discussion, ideally from early
diagnosis, can help dying people to feel that their concerns are
heard, that their wishes are followed, and that they are not alone.
Most people want to know that they will be
remembered. Encouraging friends and family to share stories or
memories of the person's life makes the person feel loved and cared
for. People who are nearing death are frequently afraid of dying in
great pain. Health workers or carers should be able to reassure
patients that pain relief will be carried out up to the point of
death. Another great worry is what will happen to patient's
dependants after they die. Where possible, plans should be made for
dependants and partners. Although it can be distressing to discuss
these issues, making plans can reduce anxiety. Making a will can
also prevent family conflict and ensure that partners and children
are not left destitute. This is particularly important where
'property grabbing' is common .
• Custody of children
• Family support
• Making a will
• Funeral costs
• Future school fees
• Resolve old quarrels
• Tell patient and family members that they are
loved
• Share hopes for the future especially for children
who are left behind
• Say goodbye to carers and providers
For family members, partners and friends, looking
after someone with HIV can be very daunting. And the need to offer
counselling to partners and families following the death of a family
member or friend is often overlooked, particularly in resource poor
countries.
Counselling can help a person to discuss their loss and to mourn
appropriately. The family members may have unresolved fears about
HIV infection for themselves, and can be helped to come to decisions
about HIV testing. The process of grieving may last many months,
possibly even years. However, for some people a single counselling
session may be sufficient to clarify their thoughts and feelings,
and to reassure them that they are coping as best as they can under
the circumstances. Other people may need several sessions, and some
people never completely come to terms with a loss, particularly that
of a child.
The impact of loss of life differs across families
and communities, but one thing is clear: a child's life often falls
apart when she or he loses a parent. More than 15 million children
under 18 have lost one or both parents to AIDS. Caring for these
children affected by HIV/AIDS requires action at all levels. In the
countries hardest hit by HIV/AIDS, care for orphans lies often with
their extended families or communities.
TOP |
