Challenges in terminal
and palliative care of PLHA
care for PLHA
Caring for the caregivers
Questions for reflection
This Fact Sheet
includes information about terminal and palliative care, and addresses
the principles and practices of caring for people living with an
illness for which there is no cure. Palliative care is the combination
of active and compassionate therapies to comfort and support individuals
and families living with a life-threatening illness. During periods
of illness and bereavement, palliative care strives to meet physical,
psychological, social and spiritual needs, while remaining sensitive
to personal, cultural, and religious values, beliefs and practices.
Palliative care should start at the time of diagnosis and can be
combined with therapies for treating opportunistic illness; or it
may be the total focus of care.
requires a team approach including the PLHA, the family, caregivers
and other health and social service providers and considers the
needs of the whole person. It includes medical and nursing care,
social and emotional support, counselling and spiritual care. It
emphasizes living, encourages hope, and helps people to make the
most of each day. The palliative caregiver must treat the PLHA with
respect and acceptance, acknowledge their right to privacy and confidentiality,
and respond caringly to their individual needs.
aims to improve the quality of 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.
• Palliative care philosophy
the right of the individual and family to participate in informed
discussions and make treatment choices
life and regards dying as a normal process
hastens nor postpones death
relief from pain and other distressing symptoms
psychological and spiritual aspects of care
a support system to help PLHA live as actively as possible
a support system to help the family and loved ones cope during
the person's illness and/or bereavement.
there is a growing realization that comprehensive care must include
care associated with death and dying. Caring for the PLHA in the
terminal stages of AIDS puts a great strain on everyone involved.
For individuals who choose to die at home, where resources are scarce,
care for the dying has traditionally been provided by communities
and families, and might involve spiritual support. Families, friends,
communities, hospice, health care and social service agency workers,
volunteers, and others will be affected in this process.
One of the most
difficult aspects of caring for PLHA is deciding when to stop active
treatment and to begin to prepare the person and his/her family
for dying. In practice, the boundary between the two activities
is often indistinct, with both terminal and interventional care
continuing in tandem. The decision to stop treatment requires considerable
skill, and sensitivity. Whenever possible, the decision should be
taken by health care professionals, the PLHA, family members and
It is often difficult
to decide when aggressive medical treatment should end and when
palliative care might begin. Palliative care would begin when:
treatment is no longer effective, or the side-effects outweigh
PLHA says she/he does not want to continue aggressive therapy
body's vital organs begin to fail
|The principles of palliative and terminal care
patient/family control and the quality of life
practical support/advice for the PLHA and their loved ones
adequate pain relief and symptom control
the comfort and dignity of the individual
spiritual and emotional/grieving support for the PLHA and
their loved ones
the PLHA, their families and caregivers for death. This includes
advice concerning avoiding any traditional death rites which
could spread infection.
that appropriate provision is made for the children involved
and that their rights are respected
bereavement support to the family and loved ones following
• Challenges in terminal
and palliative care of PLHA
HIV poses a unique
set of challenges to the caregivers, the PLHA, the families, the
communities and health and social service workers. These challenges
include the following factors: AIDS may affect whole families when
parents and children become infected.
People who die from AIDS usually die at a young age.
The stigma and fear associated with HIV/AIDS often means that the
illness and death are not openly discussed and adequate preparations
for death might not be made.
Estrangement of family and friends often occurs. Sometimes the PLHA
loses contact with family and friends due to conflicting values
related to sexuality or lifestyle choices.
Community and family support might be lacking because of the stigma,
fear and isolation associated with HIV.
The care of the terminally ill person is often left to the family
(and to women in particular), who are often both unprepared and
The course of terminal care for the PLHA is unpredictable. Opportunistic
infections and illnesses are often unpleasant and difficult to manage.
These can include: foul odour, chronic diarrhoea, vomiting, skin
lesions, seeing the person in pain, dementia, confusion, aggression,
The caregiver can develop feelings of powerlessness and helplessness.
Caring for someone who is dying at home is expensive. The caregiver
must consider the loss of income, the cost of medical and pharmaceutical
supplies, and the expense of a funeral.
Problems or complications with inheritance can further increase
the poverty of women and children.
The physical burden of caring for PLHA.
The emotional burden for the carers of seeing a loved one dying.
Remember: An essential part of effective palliative care is the
provision of support for caregivers and service providers. Such
support will enable them to work through their own emotions and
grief related to the care they are providing.
care for PLHA
Care for the PLHA
at the end stage of the illness might occur in a hospice or a special
terminal care facility. In most cases, however, the PLHA will die
at home. In some resource poor countries, dying at home is the only
option. The primary concern in terminal and palliative care is to
make the PLHA as comfortable as possible by providing medical, spiritual,
emotional, practical, and psychosocial support both to the individual
and to his/her loved ones. Even where resources are severely limited,
good palliative care can be given. The decision to stop medical
treatment must be made by the PLHA (if this is possible) and the
family or loved ones, and in conjunction with the health workers.
Care then shifts to make the dying person as comfortable as possible,
and to prepare emotionally and spiritually for death. Such care
includes both practical and nursing care issues, as discussed below.
The PLHA (if able) should make the choice about a suitable place
to die. This choice might include a hospice or terminal care facility,
or their own home. In most instances, the person will remain at
home to die. Hospice and terminal care centres usually have specially
trained staff to care for both the person who is dying and their
loved ones. If the PLHA remains at home, then the family, and other
caregivers will require special training to provide appropriate
terminal care for the PLHA.
The following considerations for providing good palliative/terminal
home care will be dependent upon adequate resources. However, whenever
possible, care should include:
Nursing care issues
effective pain relief
It is essential
to maintain pain control. This means that the person might require
more than the usually prescribed 3-4 hour regimen. Nurses and midwives
should consult their local treatment protocols for pain relief for
the terminally ill PLHA. Many AIDS patients have more than one pain
related to different opportunistic illnesses. Each needs to be diagnosed
and treated. Psychological and spiritual concerns related to HIV may
make physical pain worse. These psychological and spiritual concerns
should be addressed at the same time as treating the physical pain.
At this stage of the illness, there is no fear of patient addiction
to medications; the overall concern is for patient comfort. Other
nursing care measures might include placing a cool, clean, moist cloth
over the painful site, or applying heat if necessary. Massage and
deep breathing exercises might also help the patient to relax.
The nurse can help the PLHA and caregiver by providing the appropriate
medications to control pain. Where adequate resources are available,
even in the terminal stages of AIDS, the PLHA should be able to
remain pain free. Being pain free involves giving routine doses
of a suitable analgesic. Pain relief is a three stage approach:
aspirin or paracetamol may be given.
2. If pain relief is not maintained, give codeine or dihydrocodeine
(with or without non-steroidal anti-inflammatory drugs such as
ibuprofen or diclofenac).
3. If the pain persists, morphine can be given, with or without
a co-analgesic) or synthetic pethidine and fentanyl should be
given. Some form of sedation such as valium might also be considered.
the patient nourished and hydrated
Those who are confused
need constant attention and reassurance, and might also need to be
restrained from hurting themselves. Dangerous objects (and medications)
should be removed from their reach. Severe dementia may require sedation
(consult local drug protocols).
Diarrhoea can be a major problem, sometimes persisting for several
months, with stools that may be mucoid and foul smelling with pus.
Nourishment should be light and given at frequent intervals. Dehydration
can be prevented by administering fluids such as water, unsweetened
fruit juices, soup, rice water, and weak tea. If the person is vomiting,
sips of water should be given frequently. Oral rehydration therapies
such as homemade sugar and salt solutions may be given. In some
circumstances, intravenous rehydration may be necessary. Medicines
(see Fact Sheets 4 & 5) might also be prescribed. Always use
Universal Precautions (Fact Sheet 11) when handling faecally contaminated
Maintain basic physical care
This includes keeping the PLHA clean, dry, and comfortable should
be maintained. It is important to change the person's position frequently,
and to keep the room well ventilated. Air freshener sprays, although
expensive, are useful, as is the burning of incense or other herbal
mixes. See Fact Sheets 4 & 5 for other suggestions for providing
physical care for the PLHA.
Mental confusion or dementia
These affect many people with HIV-related illness. The individual
may move clumsily and become unaware of what is happening around
them. They may be be forgetful and unable to think clearly. Their
awareness of being confused may come and go, which can be very upsetting
for the caregivers.
Looking after a confused person is exhausting and distressing. Caregivers
need to be encouraged to take turns in caring for the PLHA. Nurses
and midwives should help the family understand that the individual's
behaviour is not intentional. They must also ensure that adequate
care for the PLHA is available. Medication lists should be reviewed
regularly in order to assess whether some medication might be compounding
Severe skin abscesses or ulcers can become infected
Nursing care should include dressing the skin lesions, lancing boils,
and keeping the area clean (See Fact Sheet 11 on Universal Precautions).
In addition medications given locally, orally or by injection might
be necessary (see Fact Sheet 4 & 5 for further treatment regimens).
Nurses are advised to consult their local drug protocols.
Emotional distress is a common experience
It can be experienced by the PLHA, the family members or other caregivers.
It is particularly likely at the first disclosure of the individual's
HIV status. Counselling can help in these situations.
Issues that might need to
be addressed during counselling include:
Fear of death
Fear is a normal reaction and can make people angry, depressed,
or aggressive. Caregivers should not give false reassurances, but
should encourage the person to talk about their fears. Spiritual
support might also be helpful.
Loneliness and depression
Sometimes when someone is dying, people stop coming to visit because
they fear death, or do not know how to react. Such isolation can
lead to a sense of loneliness and depression. People should be encouraged
to visit (if the PLHA wishes). In some cultures, people will also
need an opportunity to discuss their feelings about being with someone
who is dying.
Feelings of guilt and regret
The PLHA may feel responsible for exposing his/her partner to infection,
or may feel guilty for having brought shame to their family or friends.
Failure to settle debts, fulfill ambitions, or attend to their responsibilities
to children can all cause feelings of guilt, sorrow, and regret.
A person may seek forgiveness or wish to discuss ways of resolving
problems for which he/she feels responsible.
This support can come either through an organized religion, or through
the exploration of the PLHA's own spirituality, beliefs and values
is very important. The PLHA might have been cut off (whether by
him/herself or by their community) from his/her religion. Caregivers
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 observances to be performed, including funeral arrangements,
in the event of their death.
Making a will
A will helps to make clear what a person wishes to happen after
his/her death. The surviving women and children are often left impoverished
and unprovided for unless a will is made.
|A will must be made in accordance with local law and may:
ensure that property, land and valuables are passed on to
people that the PLHA stipulates
make clear who has custody of children; and, if there is no
partner, appoint guardians
specify trustees of executors who will ensure the will is
provide instructions about funeral arrangements
|To be valid, a will must usually be:
written in permanent ink or typed
signed by the person and clearly dated. Signing and dating
must be witnessed. (Those who benefit from the will should
not be witnesses.)
written when the person is of sound mind, and not being forced
to do so by someone else.
death comes it is important not to leave the dying person alone.
Many people are very afraid of dying alone. Respect should be
given to rituals, observances, and customs related to laying out
the body. Mourners can be given time alone with the body if they
wish. However, all persons should be warned about the risk of
• Caring for the carergivers
loved ones, caregivers and health care workers all need to be supported
and cared for as they provide terminal care to the PLHA. Support
groups, counselling (both individual and group), and instrumental
care are all helpful strategies to support the caregivers. Instrumental
support includes the provision of adequate resources (medical supplies,
medicines, and personnel) to make effective terminal care possible.
Emotional and spiritual support should also be available. The kind
of support that caregivers need will vary. Acknowledging the need
for such support and providing ways to access such support are essential.
If such support is not available, the burden of care can become
too great and caregiver exhaustion may follow.
• Bereavement counselling
Families and friends
often have little social support, or may have become isolated while
caring for the PLHA. Bereavement support should be made available
before the person dies, and for as long afterwards as people need
it. People react to death in different ways, and need different
types of support. For some, it can take months or years to come
to terms with loss. Additionally, people's responses may be affected
by the way the person died: for example, whether the PLHA died alone
and in pain, or died peacefully, surrounded by loved ones. Those
left behind often blame themselves if they think they could have
|Bereavement counselling should:
an opportunity to talk about events leading up to the death,
about the death itself, and the observances and rituals immediately
after the death
people that feelings of disbelief, denial, sadness, pain and
anger are normal
to express their feeling and concerns, especially if it is
difficult for them to do this with friends and family
people to accept their loss and start to look to the future.