What it is
Palliative care is an approach which improves the quality of life of patients and their families facing life-threatening illness, through the prevention, assessment and treatment of pain and other physical, psychosocial and spiritual problems.
- Provides relief from pain and other distressing symptoms;
- Affirms life and regards dying as a normal process;
- Intends neither to hasten nor postpone death;
- Integrates the psychological and spiritual aspects of patient care;
- Offers a support system to help patients live as actively as possible until death;
- Offers a support system to help the family cope during the patient’s illness and in their own bereavement;
- Uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated;
- Will enhance quality of life, and may also positively influence the course of illness;
Why it is Important
Palliative care is an essential component of a comprehensive package of care for people living with HIV/AIDS because of the variety of symptoms they can experience - such as pain, diarrhoea, cough, shortness of breath, nausea, weakness, fatigue, fever, and confusion. Palliative care is an important means of relieving symptoms that result in undue suffering and frequent visits to the hospital or clinic. Lack of palliative care results in untreated symptoms that hamper an individual’s ability to continue his or her activities of daily life. At the community level, lack of palliative care places an unnecessary burden on hospital or clinic resources.
How it is done
Deciding who is to provide palliative care
- Health workers : Health workers can provide basic medical and psychological support including necessary drugs to control pain and other symptoms that occur as a result of HIV related disease.
- Family and community caregivers : when patients choose to be at home, caregivers can be trained by health workers to effectively provide the prescribed medications and other physical and psychological support that may be needed. Friends, relatives and others in the community can be trained to ensure that the patient is comfortable. Medical attention from health facility workers (home visits to support the patient and to assist the caregiver) should be available as needed. Families and friends should be provided support even after the death of the patient. Bereavement counselling is an opportunity to support the loss of affected loved ones and to consider future plans.
Deciding where palliative care can be provided
- In low HIV seroprevalence countries palliative care may be a routine part of hospital and clinic care.
- In countries with a high burden of HIV infection, palliative care should be part of a comprehensive care and support package, which can be provided in hospitals and clinics or at home by caregivers and relatives. In many settings, HIV infected people prefer to receive care at home. The provision of palliative care can be augmented significantly by the involvement of family and community caregivers. A mix of psychosocial support, traditional or local remedies, and medicines can be combined to provide palliative care that surpasses that found in many overcrowded or poorly staffed hospitals.
- Wherever palliative care is provided, factors to be assessed include affordability and the presence of community care and support services.
- Developing guidelines and training for palliative care should be specifically included in national guidelines for the clinical management of HIV/AIDS.
- Training on the provision of palliative care should be incorporated into the curriculum for all health care providers.
- Guidelines for home care services should include basic management of palliative care by family members and community volunteers.
- Training courses for family members and community volunteers can be organised and provided by health care workers at the community level.
In all of the above, symptomatic care and pain control using the full analgesic ladder should be incorporated.